‘The balance in our relationship has changed’: everyday family living, couplehood and digital spaces in informal spousal care.
Andréasson Frida, Mattsson, Tina, Hanson, Elizabeth
(2021)
ABSTRACT
Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan's perspective on the doing of family life, and Hochschild's analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants' sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.
”Det mesta har ställts in” – Hur Covid-pandemin påverkat personer med NPF och deras anhöriga.
Riksförbundet ATTENTION
(2021)
Denna rapport är ett led i Attentions arbete för att uppmärksamma och förbättra situationen för personer med neuropsykiatriska funktionsnedsättningar. Rapporten redogör för en enkätundersökning genomförd i april 2021.
A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data
Marcus F. Johansson, Kevin J. McKee, Lena Dahlberg, Christine L. Williams, Martina Summer Meranius, Elizabeth Hanson, Lennart Magnusson, Björn Ekman, Lena Marmstål Hammar
(2021)
Abstract
Background
Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.
Methods
The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD.
Results
In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.
Conclusions
Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.
A Divided Old Age through Research on Digital Technologies
Poli, Arianna
(2021)
Doktorsavhandling
This thesis aims at contributing to the understanding of digital inequalities among older people, by studying the involvement of older people in research on digital technologies. Some mechanisms driving old age digital inequalities are well known. For instance, people with lower social positions tend to have lower digital skills, to face technology accessibility and affordability issues, and, thus, to engage less with digital technologies compared to their counterparts. However, less attention has been paid to issues related to research and development of digital technologies, such as the involvement of older people in research evaluating new digital technologies. Previous studies indicate that participants and non-participants in research are different one another, with the former being younger, reporting higher educational levels, having better health status than the non-participants. This may bias research outcomes and lead to incorrect conclusions on the utility of digital technologies. The objective of this thesis is to investigate the link between the involvement of older people in digital technology evaluations and the research outcomes. Healthcare is used as exemplifying context in which digital technologies are used. In Study I, participation in digital health research is conceptualised, and a research tool for identifying and measuring selective participation is developed. In Study II and III, factors associated with participation in two digital health intervention studies are analysed. In Study IV, the impact of selective participation on the research outcomes of a digital health study is identified, measured, and corrected. Thesis findings show that participation of older people in digital health research is selective by age, gender, health status, job level, and digital skills, and can indicate a mechanism for digital inequalities. Selective participation biases research outcomes by overemphasising the intervention effects of the over-represented groups over those among the under-represented groups. It can cause an overestimation of the positive effects of digital health technologies due to the under-representation of those groups who do not benefit from the intervention. This promotes digital technologies which increase exclusion risks for some groups of older people and reinforce old age digital and social inequalities. Weighting procedures can be used for mitigating the impact of this mechanism on the research outcomes of intervention studies on digital technologies.
Att ha en förälder som dömts till fängelse försämrar barnens livschanser
Will Dobbie, Hans Grönqvist, Susan Niknami, Mårten Palme, Mikael Priks
(2019)
Barn vars förälder dömts till fängelse klarar sig sämre i skolan och har en ökad risk för egen kriminalitet i tonåren. Som unga vuxna har de svårare att etablera sig på arbetsmarknaden, visar en ny IFAU-rapport.
Rapporten är en sammanfattning av IFAU Working paper 2019:24
Barn som närstående i Sörmland behöver stärkt stöd Resultat från Liv & Hälsa ung undersökningen 2020
Region Sörmland
(2021)
Syftet med denna kartläggning är att beskriva hur många barn som är närstående till någon som
har allvarlig fysisk/psykisk sjukdom/funktionsnedsättning, missbruk eller plötsligt avlidit. Vi
beskriver också hur barn som närstående har det inom områden som rör skola, hälsa, riskbeteenden ANT (alkohol, narkotika och tobak), socialt stöd samt trivsel och framtidstro. Målet med
rapporten är att uppmärksamma livsvillkoren hos barn som närstående i Sörmland.
Benefits and barriers of technologies supporting working carers - A scoping review
Alice Spann, Joana Vicente, Sarah Abdi, Mark Hawley, Marieke Spreeuwenberg, Luc de Witte
(2021)
Abstract
Combining work and care can be very challenging. If not adequately supported, carers' employment, well- being and relationships may be at risk. Technologies can be potential solutions. We carried out a scoping review to find out what is already known about technologies used by working carers. The search included academic and grey literature published between January 2000 and June 2020. Sixteen relevant publications were analysed and discussed in the context of the broader discourse on work-care reconciliation. Technologies discussed can be classified as: (a) web- based technologies; (b) technologies for direct communication; (c) monitoring technologies; and (d) task-sharing tools. Technologies can help to make work-care reconciliation more manageable and alleviate psychosocial and emotional stress. General barriers to using technology include limited digital skills, depending on others to use technol-ogies, privacy and data protection, cost, limited technological capabilities, and limited awareness regarding available technologies. Barriers specific to some technologies include work disruptions, limited perceived usefulness, and lacking time and energy to use technologies. More research into technologies that can address the needs of working carers and how they are able to use them at work is needed.
Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.
O'Sullivan, Anna, Alvariza, Anette, Öhlen, Joakim, Håkanson, Cecilia
(2018)
BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.
METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.
RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.
CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.
Family members' expressions of dignity in palliative care: a qualitative study
Anna Sandgren, Lena Axelsson, Tove Bylund-Grenklo, Eva Benzein
(2020)
Abstract
Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. The two-headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.
Glöm allt men inte mig
Grandin Philomène
(2021)
Det är 80-tal och Philomène och hennes pappa lever ett okonventionellt liv fyllt av kultur och kärlek. Men pengarna är oftast slut. Pappa är Izzy Young, legendaren som upptäckte Bob Dylan och vars Folklore Center i New York utgjorde scen för musiker och poeter som Patti Smith och Allen Ginsberg.
Trettio år senare sjunker Izzy allt djupare in i demens.
En gripande uppväxtskildring och en berättelse om en far och dotter som vägrar släppa taget om livet och varandra.
Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial
Biliunaite Ieva, Kazlauskas Evaldas, Sanderman Robbert, Truskauskaite-Kuneviciene Inga
(2021)
Abstract [en]
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.
Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.
Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.
Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention's platform and the choice of content.
Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.
Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project
D’Amen Barbara, Socci Marco, Di Rosa Mirko, Casu Giulia, Boccaletti Licia, Hanson, Elizabeth, Santini Sara
(2022)
Abstract [en]
The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving "uncooperative" disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving
Planera framtiden – redan idag. Ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga
Anna Pella
(2021)
Skriften Planera framtiden – redan idag är ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga. I skriften finns berättelser från familjer, yrkesverksamma och specialister.
Skriften kan vara ett stöd för personer som lever nära någon med flerfunktionsnedsättning. Den kan också användas som underlag för diskussion i olika verksamheter och utbildningar.
På tal om ålder - Psykiskt välbefinnande – oavsett generation
MIND
(2021)
Sammanfattning:
Psykisk ohälsa ses ofta som en naturlig del av åldrandet – något
att acceptera snarare än att förebygga eller behandla. Psykisk
ohälsa i hög ålder kan dock ofta vara konsekvenser av sociala
förändringar och försämrad hälsa och funktionsförmåga. Denna
rapport syftar till att ge en översikt av forskningsläget gällande
psykisk ohälsa bland äldre personer; dess förekomst, grupper
som har ökad risk för psykisk ohälsa samt förebyggande och
behandlande arbete. I den här rapporten fokuserar vi på åldersgrupper över 65 år – en grupp med stor variation i hälsa och
levnadsförhållanden.
Relatives' Experiences of Mental Health Care, Family Burden and Family Stigma: Does Participation in Patient-Appointed Resource Group Assertive Community Treatment (RACT) Make a Difference?
Nils Sjöström, Margda Waern, Anita Johansson, Bente Weimand, Ola Johansson, Mats Ewertzon
(2021)
Abstract
The aim of this exploratory cross-sectional study was to investigate the experiences of relatives of individuals with severe mental illness with and without participation in patient-appointed Resource Group Assertive Community Treatment (RACT). A total of 139 relatives (79 with and 60 without RACT) completed the Family Involvement and Alienation Questionnaire, the Burden Inventory for Relatives of Persons with Psychotic Disturbances, and the family version of the Inventory of Stigmatizing Experiences. We found that relatives participating in RACT experienced a more positive approach from the healthcare professionals, as well as a lower degree of alienation from the provision of care. Relatives who did not participate in RACT were more afraid that their ill next of kin would hurt someone. No other differences in family burden were found. Experiences of family stigmatization were similar in both groups. In conclusion, participating in patient-appointed RACT may contribute to a higher level of satisfaction for relatives in their encounter with healthcare professionals and a more positive alliance. Implementation of RACT in new settings would require adaptation to local conditions to facilitate cooperation between healthcare staff and other relevant services. Staff training focuses on the case manager function and needs assessment, as well as how to create an alliance with the patient and his/her relatives.
The Family Model Slutrapport från en genomförbarhetsstudie med medarbetare inom barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård i Region Skåne, Region Halland och Region Västra Götaland
Gisela Priebe, Ann-Louise Danlarén, Maria Afzelius
(2021)
Sammanfattning
The Family Model är ett familjeorienterat verktyg där kliniker med hjälp av en visuell modell tillsammans med familjen kartlägger hur psykisk ohälsa påverkar och påverkas av relationerna i familjen och omständigheterna omkring den. Modellen har utvecklats av Adrian Falkov, barn- och ungdomspsykiater i Australien. Syftet med studien är att undersöka om modellen kan vara användbar i Sverige. Studien består av två delar. I den första delen fick medarbetare i barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård sätta sig in i modellen genom att bland annat gå en webbkurs, eventuellt prova modellen i praktiken (frivilligt) och sedan delge sin uppfattning i en enkät. Sammanfattningsvis finner man modellen användbar, både i verksamheter som vill utveckla ett tydligare familjeperspektiv i sitt arbete och som komplement till andra interventioner, som många av deltagarna är förtrogna med. Några menar att de redan har välfungerande metoder som är bättre anpassade till deras arbete med t.ex. späd- och småbarn och deras föräldrar. Det finns också en önskan att den engelska webbkursen och den visuella modellen skall översättas och anpassas till svenska. I den andra delen av studien gick vi igenom ett antal styrdokument för vård av barn och vuxna med psykisk ohälsa för att se vilken vägledning dessa ger för arbetet med familjer med psykisk ohälsa. Många styrdokument tar upp arbete med familj och närstående till patienten, men detta sker oftare ur ett individorienterat än ur ett familjeorienterat perspektiv. Implementering och utvärdering av familjeorienterade interventioner vid psykisk ohälsa framstår som en fortsatt angelägen uppgift.
The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective
O'Sullivan Anna, Alvariza Anette, Öhlén Joakim, Larsdotter Cecilia
(2021)
OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.
METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.
RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).
SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.
Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare"
Aass, Lisbeth Kjelsrud
(2021)
Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare.
Aims: The overall aim of this thesis was to illuminate perceptions of everyday life, family support from mental healthcare professionals, and quality of community mental healthcare from the perspectives of families living with mental illness. A further aim was to elucidate families' and mental healthcare professionals' experiences of Family Centered Support Conversations (FSCS) in community mental healthcare.
Methods: A descriptive design with qualitative and quantitative methods was used. Qualitative data were collected by means of family interviews with seven families living with a young adult suffering from mental illness (n= 17 participants) (I, III) and individual interviews with mental healthcare professionals (n= 13) (IV). The data were analyzed using phenomenography (I, III, IV). Quantitative data were collected from adult patients (n= 43) suffering from mental illness and family members (n=43) (II) in community mental healthcare using the Family Perceived Support Questionnaire (ICE-FPSQ), the Quality in Psychiatric Care – Community Out -Patient (QPC-COP) and Out-Patient Next of Kin (QPCCOPNK). The data were analyzed using non- parametric statistics (II).
Main findings: Families balanced between letting go and enabling the young adult to become independent while remaining close to help him/her complete education, work and have a social life (I). The young adults tried not to be a burden, but still longed for family members to understand them (I). Family members intervened as best they could (I), but felt there was a lack of support and respect and no invitation to take part in the mental healthcare
(II). Family members reported significantly lower quality of community mental healthcare than patients (II). Healthcare professionals held back information although young adult patients had consented to give family members insight (I). Athough the FCSC was experienced as new and uncomfortable, the families also regarded it as beneficial and safe
(III). It facilitated an opportunity to share and reflect on the family's beliefs, and enabled them to find new beliefs and opportunities in everyday life (III). The FCSC helped healthcare professionals to structure the involvement of family members as a complement to care as usual, although there was still a need to adjust the intervention (IV).
Conclusions: Young adults suffering from mental illness are reliant on support from family to manage everyday life. Mental healthcare professionals play an important role in facilitating a safe environment for sharing beliefs and bringing strengths and resources to the front seat in family-centered support conversations. When family are included as part of the mental healthcare team, this enhances their ability to be supportive.
Utvärdering av familjehelger – ett stöd till utlandsveteranfamiljer Invidzonen – Försvarsmakten
Eva Sennemark, Linnéa Aldman, Elizabeth Hanson
(2021)
Försvarsmakten finansierar sedan 2018 familjehelger för utlandsveteraner och deras familjer som en del av personal- och anhörigarbetet. Familjehelgerna genomförs av anhörignätverket Invidzonen i syfte att stötta och informera föräldrar där den ena föräldern har varit, är utsänd eller kommer att sändas ut på ett internationellt uppdrag.
Nationellt kompetenscentrum anhöriga (Nka) har på uppdrag av Försvarsmakten genomfört en utvärdering av familjehelgerna, vilket redovisas i denna rapport. Fokus för utvärderingen har varit måluppfyllelse och förväntade effekter för deltagande familjer.
What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson, Steven M. Schmidt
(2021)
Abstract
Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/signifcant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that afects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers' perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using frst-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were
either aged 60+ years themselves or were caring for someone who was aged 60+ years.
Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic signifcantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: 'family motivation' and 'the greater good motivation'. These, according to our results, almost equally valued dimensions, described the difering reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers' perceived motivations and obstacles regarding carer involvement in research. Paying attention to the difering motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact.
"Childlessness at the end of life: evidence from rural Wales."
Wenger, C. G.
(2009)
ABSTRACT After the spouse, children are the most likely source of informal support for an older person when the frailties of advanced old age create the need for help. Childlessness may thus be seen as particularly a problem for older people. In general, to compensate for the lack of children, childless people develop closer relationships with available next-of-kin and non-kin. Despite this, in times of need they are likely to find themselves with inadequate informal support. Using data from the Bangor Longitudinal Study of Ageing, this article explores the consequences of childlessness among persons aged 85 years or more living in rural Wales. The results indicate that by the time they reach old age, childless people have adapted to their situation and developed expectations consistent with being childfree. They have closer relationships with collateral kin, friendships are important and a high value is placed on independence. Nevertheless, unless they die suddenly or after a short acute illness, almost all of them enter residential care or a long-stay hospital at the end of their lives. It is also shown that the situation of childless people varies greatly and depends on several factors, particularly marital status, gender, social and financial capital, and on the person's earlier investment in the strengthening of next-of-kin and non-kin networks.
"Man vill ju klara sig själv". Studievardagen för studenter med Asperger syndrom i högre utbildning
Simmeborn Fleischer A
(2013)
Sedan början av 2000-talet har det skett en markant ökning av studier
gällande barn och ungdomar och Autism. Dock är det så att den mesta
forskningen fortfarande är inom det medicinska området. Endast ett
fåtal av studierna rör vuxna med Asperger syndrom (AS) som studerar
på högskola/universitet. Samtidigt sker en ökning av personer med AS
som söker högre utbildning såsom högskola/universitet, vilket gör
forskning gällande personer med diagnosen AS högaktuell. Antalet studenter
med kognitiva funktionshinder, dit AS räknas, som sökt pedagogiskt
stöd på högskola/universitet i Sverige, har ökat från 1 427 studenter
2010 till 1 943 studenter 2012. När man studerar på högskola/universitet
så finns det pedagogiska stöd att tillgå, och till vardagen
finns Lagen om stöd och service till vissa funktionshindrade (LSS) och
Socialtjänstlagen (SoL) som personer med AS har möjligheter att söka
stöd genom. Personer med AS kan ibland ha svårt att utnyttja stödsystem
som kräver att man själv identifierar och uttalar sina behov av stöd.
Denna avhandling fokuserar på personer med AS i högre utbildning och
stöd.
I doktorsavhandlingen ingår två studier: Studie I som är en fallstudie
och Studie II, som är en enkätstudie. Bindningspunkten för studierna är
studenter med AS som fått pedagogiskt stöd i sin utbildning vid högskola/universitet.
"Varför frågar ingen hur jag mår?".
Spjuth, E.
(2004)
‘The overall quality of my life as a sibling is all right, but of course, it could always be better’. Quality of life of siblings of children with intellectual disability: The siblings' perspectives.
Moyson T, Roeyers H.
(2012)
BACKGROUND:
The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling.
METHOD:
As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in-depth, phenomenology-based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory.
RESULTS:
Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well-being, exchanging experiences, social support and dealing with the outside world.
CONCLUSIONS:
This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience.
’Young Carers’ and Disabled Parents: time for a change of direction
Newman, T.
(2002)
In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.
”Barn som omsorgsgivere: Adaptiv versus destruktiv parentifisering”.
Haugland, B. S. M.
(2006)
”Hon är inte adhd, hon är min syster!” En kvalitativ studie om upplevelser av att växa upp med ett syskon med adhd. C-uppsats
Stephansson, Karin & Schelin, Robert
(2008)
Författare: Karin Stephansson & Robert Schelin
Syfte: Att undersöka hur det kan vara att växa upp med en bror eller syster med diagnosen
adhd, hur livssituationen/syskonskapet hanterats, samt hur de har påverkats och hur det
eventuellt fortsätter att påverka dem i vuxenlivet. Syftet var även att undersöka syskonens
upplevelser och behov av socialt stöd under uppväxten.
Frågeställningar:
• Vilka upplevelser finns hos personer som vuxit upp med ett syskon med adhd?
• Hur upplever syskon att de har påverkats av att växa upp med en bror eller syster med
adhd?
• Hur har syskonskapet hanterats?
• I vilken utsträckning finns det behov av socialt stöd under uppväxten för syskon till
barn med adhd?
Metod: Studien är kvalitativ och bygger på intervjuer med åtta personer som vuxit upp med
ett eller flera syskon med diagnosen adhd. Intervjupersonerna består av både kvinnor och män
i åldrarna 17- 29 år.
Resultat: Resultatet visade att samtliga syskon upplevt att syskonrelationen och
familjesituationen innehållit mycket bråk som enligt intervjupersonerna var mer än vanligt
syskonbråk. Samtliga intervjupersoner ansåg att det fått ta ett stort ansvar under uppväxten.
Detta har upplevts som både positivt och negativt. Det har gjort dem ansvarsfulla men några
kände även att det lagts för mycket ansvar på dem och detta alldeles för tidigt i relation till
deras dåvarande ålder. Studien kunde påvisa en koppling mellan kommunikationen inom
familjen och upplevelsen av att ha vuxit upp med ett syskon med adhd. De intervjupersoner
som ansåg att kommunikationen inom familjen varit god och öppen beskrev upplevelser och
erfarenheter av syskonskapet som mer positivt än de intervjupersoner som ansåg att
kommunikationen inom familjen varit bristfällig.
Nyckelord: Attention Deficit/Hyperactivity Disorder (adhd), syskon, coping, socialt stöd,
systemteori
A Comprehensive Review and a Meta-Analysis of the Effectiveness of Internet-Based Psychotherapeutic Interventions
Barak, A., Hen, L., Boniel-Nissim, M., & Shapira. NA.
(2008)
Internet-based psychotherapeutic interventions have been used for more than a decade, but no comprehensive review and no extensive meta-analysis of their effectiveness have been conducted. We have collected all of the empirical articles published up to March 2006 (n = 64) that examine the effectiveness of online therapy of different forms and performed a meta-analysis of all the studies reported in them (n = 92). These studies involved a total of 9,764 clients who were treated through various Internet-based psychological interventions for a variety of problems, whose effectiveness was assessed by different types of measures. The overall mean weighted effect size was found to be 0.53 (medium effect), which is quite similar to the average effect size of traditional, face-to-face therapy. Next, we examined interacting effects of various possible relevant moderators of the effects of online therapy, including type of therapy (self-help web-based therapy versus online communication-based etherapy), type of outcome measure, time of measurement of outcome (post-therapy or follow-up), type of problem treated, therapeutic approach, and communication modality, among others. A comparison between face-to-face and Internet intervention as reported on in 14 of the studies revealed no differences in effectiveness. The findings of this meta-analysis, and review of additional Internet therapy studies not included in the meta-analysis, provide strong support for the adoption of online psychological interventions as a legitimate therapeutic activity and suggest several insights in regard to its application. Limitations of the findings and recommendations concerning Internet-based therapy and future research are discussed.
A meta-analysis of parent training: Moderators and follow-up effects
Lundahl, B., Risser, H. J., & Lovejoy, C. M.
(2006)
A meta-analysis of 63 peer-reviewed studies evaluated the ability of parent training programs to modify disruptive child behaviors and parental behavior and perceptions. This analysis extends previous work by directly comparing behavioral and nonbehavioral programs, evaluating follow-up effects, isolating dependent variables expressly targeted by parent training, and examining moderators. Effects immediately following treatment for behavioral and nonbehavioral programs were small to moderate. For nonbehavioral programs, insufficient studies precluded examining follow-up effects. For behavioral programs, follow-up effects were small in magnitude. Parent training was least effective for economically disadvantaged families; importantly, such families benefited significantly more from individually delivered parent training compared to group delivery. Including children in their own therapy, separate from parent training, did not enhance outcomes.
A Randomized Controlled Effectiveness Trial of Parent Management Training With Varying Degrees of Therapist Support
Kling, Å., Forster, M., Sundell, K., & Melin, L.
(2010)
This study examined the effectiveness of a Swedish parent management training (PMT) intervention for parents of children aged 3 to 10 within the context of regular social service. Self-referred parents of 159 children (aged 3 to 10) with conduct problems were randomly assigned to either 11 practitioner-assisted group sessions (PMT-P), or a single instructional workshop followed by self-administration of the training material (PMT-S), or a waitlist control group. Intent-to-treat analyses showed that both PMT-P and PMT-S improved parent competence and reduced child conduct problems compared to the waitlist at posttest. Both training conditions showed further significant improvements at the 6-month follow-up. In direct comparison, PMT-P was superior to PMT-S on measures of child conduct problems at both posttest and follow-up. Improvement in child conduct was mediated by improvement in parent competencies and homework fidelity. The findings in this study have implications for large-scale dissemination of parent management training through different means of delivery.
A register study of life events in young adults born to mothers with mild intellectual disability
Lindblad I, Billstedt E, Gillberg C, Fernell E
(2014)
BACKGROUND: Young adults, born to population-representative mothers with
intellectual disability (ID), were targeted for psychosocial/life event
follow-up.
METHODS: The whole group originally comprised 42 individuals but 3 had died and 1
had moved abroad. The remaining 38 were approached and 10 consented to
participate in an interview study. However, of the remaining 28, it was not
possible to establish contact with 21 who were instead searched for in various
official registers.
RESULTS: Most (n = 18) individuals in the study group had been in contact with
different authorities and clinics. Of the 21 individuals, 10 had contact with
social services since childhood and 4 of these had been taken into care (foster
family) and 6 had had contact families during childhood. One individual had been
taken into a treatment centre and one grew up mainly with the father. Altogether
12 (57%) of 21 individuals did not grow up full-time with their biological
mother. Twelve (57%) had major neurodevelopmental/neuropsychiatric conditions,
including five with ID and seven with attention-deficit hyperactivity disorder
(ADHD). Four individuals were registered within the Prison and Probation Service
due to various types of crimes.
CONCLUSION: Individuals born to mothers with ID in our study group were at high
risk of adverse experiences and negative outcomes, such as increased childhood
mortality, a relatively large proportion of children taken into care, high rates
of ID and ADHD in the children and of criminality in young adulthood. Taken
together with the results obtained in an in-depth interview study of those in the
originally targeted sample with whom it was possible to obtain contact, the
present findings suggest that it will be important to provide early support and
longitudinal developmental follow-up in groups of children growing up with a
mother with ID. Children in this situation appear to be at a number of risks,
probably related both to hereditary factors and to social disadvantage.
A systematic review of action imitation in autism spectrum disorder.
Williams J, Whiten A, Singh T.
(2004)
Imitative deficits have been associated with autistic spectrum disorder (ASD) for many years, most recently through more robust methodologies. A fresh, systematic review of the significance, characteristics, and underlying mechanism of the association is therefore warranted. From 121 candidates, we focused on 21 well-controlled studies involving 281 cases of ASD. Overall, children with ASD performed worse on imitative tasks (Combined Logit p value < .00005). The emerging picture is of delayed development in imitation, implicating a deficit in mapping neural codings for actions between sensory and motor modalities, rather than in motivation or executive function. We hypothesise that ASD is characterised by abnormal development of these mappings, such that they are biased towards object-oriented tasks at the expense of those required for action imitation per se.
A treatment outcome study of bereavement groups for children
Tonkins, S.A. & Lambert, M.J.
(1996)
ABSTRACT An empirical study of the effectiveness of an eight-week children's bereavement psychotherapy group was undertaken. Children, aged 7–11, who had a parent and/or sibling die were initially assigned to either a treatment group or a waiting list control group and followed over an eight-week period. Participation in the experimental group was associated with a significant decrease in symptomatology, as assessed by multiple measures using multiple sources. Despite a small sample, the intervention was sufficiently powerful to suggest the use of short-term group therapy to help children cope with the death of a parent and/or sibling.
A treatment outcome study of bereavement groups for children - ResearchGate. Available from: http://www.researchgate.net/publication/226810839_A_treatment_outcome_study_of_bereavement_groups_for_children [accessed Jun 23, 2015].
A Unified Theory of Development: A Dialectic Integration of Nature and Nurture
Sameroff, A.
(2010)
The understanding of nature and nurture within developmental science has evolved with alternating ascendance of one or the other as primary explanations for individual differences in life course trajectories of success or failure. A dialectical perspective emphasizing the interconnectedness of individual and context is suggested to interpret the evolution of developmental science in similar terms to those necessary to explain the development of individual children. A unified theory of development is proposed to integrate personal change, context, regulation, and representational models of development.
Activitybased intervention for multiple-disabled visually impaired people
Tellevik JM, Elmerskog B.
(2009)
The article describes assessment, planning and training for people with multiple disabilities and visual impairment (MDVI). The ImPAct MDVI project, an EU Comenius programme, addressed concerns expressed by teachers of children and young people with MDVI as to how they are expected to integrate the diverse curriculum elements and particular skills they have been taught into a meaningful educational process. The aim of the project was to develop a holistic teaching approach, based on activities, participation and involvement in real life situations, aiming at involving people with MDVI in their social and physical context. This was achieved by applying a 5-step working model (Tellevik and Elmerskog, 2001), which sought to support the development of assessment and planning intervention strategies.
ADHD ur ett socioekonomiskt perspektiv
Nilsson I, Nilsson-Lundmark E.
(2013)
Vi har i ett antal studier analyserat ADHD-problematiken ur ett socioekonomiskt perspektiv med hjälp av kalkylmodeller vi utvecklat under cirka 30 års tid. Tidiga insatser kring barn med ADHD ger – vid sidan av de mänskliga vinsterna - utomordentligt höga samhällsvinster. Flera miljoner kronor per barn för perioden upp till 20 års ålder. Än tydligare blir det då man följer vuxna, i det här fallet med kriminell belastning. Samhällskostnaderna för uteblivna insatser för en grupp om 30 intagna kan under en 20 års period uppgå till mer än 800 Mkr. En insats mot denna målgrupp, av det slag som gjorts vid projektet vi följt på
Norrtäljeanstalten ger på 20 års sikt sannolikt en finansiell avkastning på mer än 250 Mkr eller 80 gånger insatsen. Tidiga, samordnade och evidensbaserade insatser för denna målgrupp är en social investering med utomordentligt hög lönsamhet. Ur ett strukturellt perspektiv kan frånvaron av kloka insatser enklast beskrivas som bristen på helhetssyn och långsiktighet då beslut tas kring denna målgrupp. Priset för detta är högt, mänskligt och ekonomiskt.
Adolescents’ perceptions of social support after the death of a parent
Gray, R.
(1989)
Fifty individuals who had lost a parent through death during adolescence were interviewed. All deaths had occurred within five years and not less than six months before the study was initiated. Half the participants had been members of a peer-support group in their secondary school. When asked to describe the types of help received during their bereavement and to rate the usefulness of such help, most participants reported that a peer (40 percent) or the surviving parent 28 percent had been "most helpful," primarily through emotionally supportive behavior. The results indicated that the source of support had often influenced the style of support and among adolescents who had participated in a peer-support the participants' perceptions of its value. The perceptions of support had not.
Alder og holdninger tik familien og velferdsstaten - egeninteresse eller altruisme og generativitet?
Daatland, S. O.,
(2012)
Anhörig till person med psykisk sjukdom eller funktionsnedsättning – en resurs i behov av stöd. Fokus på Anhöriga nr 17
Ewertzon, M.
(2010)
Anhöriga som vårdar eller stödjer en närstående ska erbjudas stöd, enligt en ny bestämmelse i socialtjänslagen. Bestämmelsen innebär att många kommuner behöver uppmärksamma målgrupper som de inte har uppmärksammat tidigare. En av dessa målgrupper är anhöriga till personer med långvarig psykisk sjukdom eller psykisk funktionsnedsättning. Mats Ewertzon - doktorand vid Örebro universitet och adjunkt vid Högskolan Dalarna - beskriver här de anhörigas situation och resonerar kring hur stödet kan utformas. Artikeln är den första av två som handlar om stöd till målgruppen.
Anhöriga som ger omsorg till närstående– fördjupad studie av omfattning och konsekvenser
Socialstyrelsen
(2014)
Sammanfattning
De flesta människor hamnar någon gång i en situation där de behöver ge omsorg till en närstående på grund av sjukdom, funktionsnedsättning eller hög ålder.
Socialstyrelsen genomförde 2012 en pilotundersökning för att kartlägga anhörigomsorgens omfattning och konsekvenser. Den visade bland annat att nästan var femte person äldre än 18 år ger omsorg till en närstående och att omfattande omsorg kan få stora konsekvenser för omsorgsgivarnas hälsa, sysselsättning och livskvalitet. Den här rapporten redovisar resultaten från två studier om dessa konsekvenser: Socialstyrelsen har gjort fördjupade analyser av 2012 års data och de analyserna har kompletterats med en intervjuundersökning för att illustrera vad olika situationer av anhörigomsorg kan innebära.
Sammanfattningsvis kan Socialstyrelsen konstatera följande:
Omsorg som ges av anhöriga till närstående har en samhällsbärande funktion och är inte bara ett komplement till hälso- och sjukvård och socialtjänst. I vissa fall ersätter anhörigomsorgen samhällets insatser för att de berörda vill ha det så, eller för att insatserna inte upplevs vara tillräckliga. I de flesta fall är omsorgsgivandet ett frivilligt åtagande men omfattningen och formerna är inte alltid självvalda. Det finns brister i samordningen av insatser från hälso- och sjukvård och socialtjänst för personer med stora vård- och omsorgsbehov, vilket ökar belastningen för de anhöriga som nödgas kompensera för det. Omsorgens omfattning har stor betydelse för graden av påverkan hos anhöriga. Ett stort omsorgsåtagande riskerar att försämra hälsan och livskvaliteten hos de anhöriga samt möjligheterna att förvärvsarbeta och studera, medan ett mindre omfattande åtagande kanske inte har någon negativ påverkan alls. Resultatet visar också att olika konsekvenser för hälsa och förvärvsarbete hänger nära samman och att de i sin tur formar livskvaliteten. Relationen mellan den som ger och den som tar emot omsorg har betydelse för hur givaren upplever situationen. De som ger omsorg till en ett barn tycks påverkas i högre grad när det gäller förvärvsarbete, ekonomi och livskvalitet, medan den som ger omsorg till en make, maka eller partner tycks påverkas i högre grad vad gäller hälsa. Anhöriga i åldrarna 30–44 år som ger omsorg till en närstående tycks påverkas mer än andra ål-dersgrupper vad gäller psykisk och fysisk hälsa, ekonomi och möjligheter till förvärvsarbete. För att säkerställa att omsorg som ges av anhöriga är frivillig behöver flera olika aktörer mer kunskap om anhörigas behov. Det gäller bland annat hälso- och sjukvården, socialtjänsten, arbetsgivare, Försäkringskassan och skolan. Stöd och information som erbjuds anhöriga omsorgsgivare behöver vara individuellt utformat och anpassat till både den som ger och tar emot omsorg. Patient- och anhörigorganisationer kan bidra med viktig kunskap i behovsinventeringar och vid utformande av stöd till anhöriga omsorgsgivare. Det är angeläget att fortsätta följa upp omfattningen och konsekvenserna av anhörigomsorg. Närmare en femtedel av den vuxna befolkningen ger omsorg till närstående. De omsorgsgivare som ger omfattande omsorg drabbas av konsekvenser vad gäller såväl hälsa som förvärvsarbete och livskvalitet och är därmed en utsatt grupp. Kommande uppföljningar bör ha fokus på att identifiera de grupper som i högre utsträckning påverkas negativt av att ge omsorg för att kartlägga vilka särskilda behov de har samt hur samhället på bästa sätt kan möta dessa personers behov och stödja dem i omsorgsarbetet. Därtill är det angeläget att följa upp anhöriga omsorgsgivare som är utrikes födda, eftersom tidigare studier inte lyckats fånga denna grupp.
Anhöriga/närstående till personer med hörsel- syn eller talskador. Behov av eget samtalsstöd. Självskattning av hälsa och påfrestningar
Jonsson, Ingrid & Gustafsson, Birgit
(2008)
Anhörigas erfarenheter av att leva nära en person med psykossjukdom
Gyllin, Sanela & Rosenberg, Catarina
(2010)
Inte bara den som är sjuk utan även de anhöriga drabbas av psykossjukdomen. Psykiatrireformen som delvis tillkom för att stärka den psykiskt funktionshindrade individens rätt till självbestämmande, blev för många anhöriga en tung börda. De anhöriga känner sig ensamma och utan stöd, med den stress och oro som psykossjukdom innebär. Problemet har emellertid uppmärksammats och år 2009 tillkom en ny lag om utökat stöd för anhöriga till psykiskt funktionshindrade.
Anhörigas erfarenheter av information och stöd i samband med palliativ cancervård. C-uppsats.
Bygeus, R. & Persson, A.
(2008)
Anhörigomsorg till vilket pris?
Szebehely M.
(2012)
Anhörigas insatser inom äldreomsorgen.
Anknytning till arbetsmarknaden och ungas etablering
Bäckman O
(2010)
Den utveckling mot ökad polarisering som visade
sig på många samhällsområden under 1990-talet
har under 2000-talet mattats av och stabiliserats.
Fler kan försörja sig på sitt arbete men den andel
som under längre tid står både utanför arbetsmarknaden
och utanför de sociala försäkringssystemen
är oförändrad (3–4 procent). Den långvariga fattigdomen
(som varar fem år eller längre) fortsatte
att minska för alla grupper. Även om inkomsterna
ökade för alla var dock inkomstökningarna större
bland höginkomsttagarna än bland dem med låga
inkomster. Därför har inkomstskillnaderna ökat.
Den etniska boendesegregationen i de tre storstadsregionerna
har stabiliserats efter att ha ökat under
hela 1990-talet, medan den ekonomiska segregationen
uppvisar en långsamt ökande trend över tid.
Sedan flera år tillbaka märks en tydlig koppling mellan
etnisk och ekonomisk segregation i storstadsregionerna.
Konjunktursvängningarna har stor betydelse
för utsatta grupper. I högkonjunktur ökar andelen
personer som kan försörja sig på sitt arbete i alla
befolkningsgrupper. Det gör att möjligheterna att
ta sig ur fattigdom och ekonomiskt biståndstagande
ökar. De som är speciellt konjunkturkänsliga
när det gäller nyetablering på arbetsmarknaden är
ungdomar som varken arbetar eller studerar under
övergångsfasen mellan skola och arbete samt nyanlända
invandrare.
Ungdomar, ensamstående mödrar samt invandrare,
främst de nyanlända och de från utomeuropeiska
länder, har hög risk för fattigdom och andra välfärdsproblem.
Välfärdsproblem kan uppträda tillsammans
och en vanlig kombination är ohälsa och
ekonomisk utsatthet. Allvarliga sjukdomar leder
ofta till försämrade ekonomiska villkor och ökad
risk för upplösning av parförhållanden.
Barn till papperslösa föräldrar har en otrygg tillvaro
och de som föds i Sverige folkbokförs inte och
kan inte identifieras genom person- eller samordningsnummer.
Detta begränsar bland annat möjligheterna
till att få kunskap om dessa barns situation
och hälsa.
I Social rapport 2010 presenteras ny kunskap
inom olika områden. För de allra flesta är fattigdom
inte bestående – hälften lämnar den redan
inom ett år. Den som en gång varit fattig löper
däremot stor risk att återigen hamna i fattigdom.
Risken att ärva sina föräldrars fattigdom är bara
något förhöjd i Sverige, däremot är det betydligt
vanligare att barn till höginkomsttagare blir välbärgade
som vuxna.
Utbildningen är en av de viktigaste faktorerna
för ungdomars framtida möjligheter. Ju tidigare
utbildningskedjan bryts desto sämre är framtidsutsikterna.
De grupper som har låga eller ofullständiga
betyg från grundskolan har kraftigt förhöjda
risker för framtida psykosociala problem.
Betygen är särskilt viktiga för utsatta barns framtidsutsikter.
Barn som växer upp i samhällets vård
eller i familjer med återkommande ekonomiskt
bistånd lämnar grundskolan med mycket lägre
betyg än andra barn och har också mycket höga
överrisker för framtida psykosociala problem.
Applying the ICF‐CY to identify children's everyday life situations: A step towards participation‐focused code sets
Adolfsson, M.
(2013)
Adolfsson M. Applying the ICF-CY to identify children's everyday life situations: a step towards participation-focused code sets
With the long-term goal to create an interdisciplinary screening tool with code sets focusing on children's participation in everyday life situations (ELS), the purpose of the present study was to identify ELS for children 0–17 years. The views of professionals and parents in Sweden, South Africa and the USA were integrated based on ICF-CY1 linkages. The chapters Self-care and Major life areas seemed most obvious to include in ELS. At the 2nd ICF-CY level, 11 categories emerged as ELS, with Hygiene and Recreation as the most obvious. Two sets of ELS were identified for infants/preschoolers and school-aged children/adolescents. Professionals and parents agreed on ELS for the older age group. Findings suggest that ELS differ in context specificity depending on maturity and growing autonomy. The study has implications for the future screening tool that is intended to support children with disabilities in describing what matters most to them in intervention planning.
Approaches to needs assessment in children’s services
Ward, Harriet
(2002)
Examining the assessment of need in children's services this book addresses the full spectrum of practice, policy and research developments in the field. The contributors include leading academics, policy makers and senior practitioners who generate a broad-based holistic approach to the assessment of children in need. They show how needs assessment in children's services can be used to tackle problems such as low achievement, mental ill-health and social exclusion at both individual and strategic levels.
Approaches to the Assessment of Need in Children's Services will enable service managers and practitioners to respond effectively to the increasing pressure to monitor outcomes and effectiveness in child care work, and to improve and coordinate children's welfare service provision at individual and community levels and provides an indispensable overview and analysis for anyone working or studying in child welfare and social care
Arbetsglädje bland anställda anhörigvårdare
Furåker B, Mossberg A-B
(1997)
Anhörigvård innebär att det i princip är samma person som hela tiden är huvudansvarig för vårdinsatsen. I en tidigare artikel har visats att många kommunalt anställda anhörigvårdare upplever bundenheten i sitt arbete. Här fokuseras i stället arbetets ljusare sidor - förekomsten av glädje, stimulans och tillfredställelse. Analysen ger vid handen att frånvaron av arbetsglädje bl.a. ssammanhänger med upplevelsen av bundenhet. Samtidigt framkommer att en annan faktor har en ännu mer avgörande betydelse: uppskattning från omgivningen. Det visar sig också att känslan av att vara uppskattad är relaterad till hur anhörigvårdarens ekonomiska situation förändrats sedan arbetet blev betalt.
Att bo och vårdas hemma : IT ger nya möjligheter till omsorg och boende : Rapport nr 1 från ett interaktivt seminarium inom ITHS-programmet.
Vårdalstiftelsen
(2002)
Att ge syskon utrymme
Granat, Tina, Nordgren, Ingrid & Rein, George
(2006)
Rapport från barn och ungdomshabiliteringen
Att lära sig leva med förvärvad hörselnedsättning sett ur parperspektiv – om anpassningsstrategiers funktionella och sociala innebörder
Fredriksson, Carin
(2001)
Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp – ett utvecklingsprojekt under åren 2000-2009
Ekenberg Lilly
(2010)
Syftet med denna satsning på anhörigstöd var att pröva och utveckla en modell för anhörigstöd med Basal Kroppskännedom (BK) och samtalsstöd i grupp vid Länsenheten Råd och Stöd i Norrbotten. Förberedelsearbetet bestod av en kurs i BK och samtal för en sjukgymnast och en kurator. Dessa två konstruerade en enkät med frågor om den anhöriges relation till vårdtagaren, upplevelse av anhörigrollen, upplevelse av stöd-insatser och den anhöriges behov av förändringar. Enkäten konstruerades med idéer från ett frågeformulär använt i Socialstyrelsens "Anhörig 300" projekt. Sjukgymnasten ledde en femdagars utbildning i BK för Länsenhetens alla kuratorer. Sex anhöriggrupper med BK och samtal i grupp genomfördes under åren 2005-2009, en i Kalix, en i Piteå och fyra anhöriggrupper i Luleå. Antalet gruppträffar varierade mellan 8-11 träffar. I anhöriggruppen i Kalix deltog fem kvinnor, som var och en levde tillsammans med en man med någon form av funktionsnedsättning. I Piteå deltog två män och tre kvinnor. Tre levde i en make/maka relation, två var föräldrar och en anhörig hade ett syskon med funktionsnedsättning. I Luleå genomfördes fyra anhöriggrupper. Anhörigkonstellationen i grupperna var män och kvinnor med anhörigrelation som make/maka och föräldrar till vuxna barn med funktionsnedsättningar. Enkätutvärdering skedde i fem anhöriggrupper som besvarades vid tre tillfällen: 1) vid start av anhöriggrupp 2) vid kursavslut och 3) vid uppföljning cirka 6 månader efter kursavslut. Deltagarna gavs utrymme till att direkt efter BK-övningarna göra anteckningar om sina upplevelser direkt efter BK-övningarnas genomförande före gruppsamtalen. I en anhöriggrupp i Luleå var deltagandet så lågt att grupprocessen uteblev. I Kalix- Piteå- och två Luleågrupper medverkade deltagarna i en individuell processutvärdering om kroppsupplevelser. Resultaten av den individuella processutvärderingen visade att deltagarna upplevde BK-övningarna, som en möjlighet till en egen skön stund med avslappning utan prestation. För många ledde detta till en större lyhördhet för kroppens signaler t.ex. om hur det är i relationen och att lägga märke till sina egna behov. Efter hand utvecklades tilliten i grupperna då deltagarna utifrån sin egen tillitsprocess öppnade sig och "vågade börja berätta". Enkätutvärde-ringen visade på marginella förändringar i skattningen av anhörigsituationen. I skattningarna framkom för makar en svag trend mot en något sämre upplevelse av anhörigsituationen medan föräldrarnas skattningar visade en svag trend mot en något bättre upplevelse av sin anhörigsituation. Kommentarerna i enkäten bekräftade denna trend. Vår erfarenhet är att BK-övningar och samtal i grupp för anhöriga kräver en noggrann förberedelse och ett fruktbart möte/samarbete mellan kurator, sjukgymnast och gruppdeltagare. I NkAs kunskapsöversikt och i NkAs lärande nätverk framhålls Mötet/samtalet som "kanske som det mest underskattade anhörigstödet" (Winqvist, 2010). Eftersom denna form av stöd saknas i dagens anhörigstöd anser vi att vår modell är ett viktigt bidrag, som borde prövas och utvärderas i större skala.
Att växa upp i turbosamhället – nya villkor och utmaningar
Dencik, L.
(2011)
Barns upplevelser när föräldrars missbruk upphört “Alltså det är svårt att må bra igen”
Alexanderson Karin, Näsman Elisabet
(2017)
Artikeln bygger på intervjuer med 15 barn till föräldrar med missbruksproblem.
Syfte: Att bidra till fördjupad förståelse av barns situation, när en förälders missbruk upphört.
Metod: En explorativ intervjustudie med barndomssociologi och symbolisk interaktionism som teoriram.
Resultat: Att missbruket upphört ger barn utrymme att känna efter hur de mår, att reflektera över missbrukets påverkan på deras hälsa och personlighet och att försöka förändra sig och sitt liv. Deras behov av bearbetning kan kvarstå lång tid. Det kan ta tid och vara svårt att bygga upp relationen till föräldern. Barn kan känna omsorgsansvar men också misstro och oro för återfall. Tonåringen kan dock se en möjlighet att gå vidare med sitt eget liv. Om missbruket bara upphör för en av två föräldrar med missbruksproblem är barn fortfarande berörda av missbruk.
Konklusion: Barns behov av bearbetning i relation till föräldrarna kan både ta och kvarstå lång tid oavsett om barnet bor med föräldern eller inte. Barnen kan både behöva hjälp för egen del och i relation till föräldern. Det ska vara påbjudet att professionella arbetar med ett familjeperspektiv, oavsett organisatoriska uppdelningar och oavsett om förälder och barn bor ihop eller ej. Det kräver strukturer, rutiner och resurser för samverkan över organisatoriska gränser.
Behavioral family counseling for substance abuse: a treatment development pilot study
O'Farrell TJ, Murphy M, Alter J, Fals-Stewart W.
(2010)
Substance-dependent patients (N=29) living with a family member other than a spouse were randomly assigned to equally intensive treatments consisting of either (a) Behavioral Family Counseling (BFC) plus Individual-Based Treatment (IBT) or (b) IBT alone. Outcome data were collected at baseline, post-treatment, and at 3- and 6-month follow-up. BFC patients remained in treatment significantly longer than IBT patients. BFC patients improved significantly from baseline at all time periods on all outcomes studied, and had a medium effect size reflecting better primary outcomes of increased abstinence and reduced substance use than IBT patients. For secondary outcomes of reduced negative consequences and improved relationship adjustment, both BFC and IBT patients improved significantly and to an equivalent extent. The present results show BFC is a promising method for retaining patients in treatment, increasing abstinence, and reducing substance use. These results also provide support for larger scale, randomized trials examining the efficacy of behavioral family counseling for patients living with family members beyond spouses.
Being the next of kin of an adult person with muscular dystrophy
Boström, K., Ahlström, G., & Sunvisson, H.
(2006)
A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.
Bereaved adolescents’ evaluations of the helpfulness of support-intended statements: associations with person centeredness and demographic, personality, and contextual factors
Servaty-Seib, H.L., & Burleson, B.R.
(2007)
Currently, there is a lack of reliable methods for assessing how bereaved adolescents perceive the informal support they receive. This study provides methodological refinements in, and a theoretical grounding for, a recently developed measure designed to distinguish support efforts that bereaved adolescents find helpful versus harmful. Participants (114 bereaved adolescents) completed the Support Intended Statement Survey (SISS), which assessed the perceived helpfulness of 14 strategies intended to comfort the bereaved. These 14 strategies were coded for the degree of person centeredness they manifested. Level of strategy person centeredness was strongly correlated with perceived strategy helpfulness. Reported helpfulness of the strategies varied substantially as a function of participants' general levels of perceived support availability, but varied less as a function of demographic and contextual factors.
Children´s experiences of Hospitalization
Coyne, I.
(2006)
Abstract
This article reports on children's experiences of hospitalization. Data were collected via semi-structured interviews with 11 children aged between seven and 14 years from four paediatric units in England. The children identified a range of fears and concerns, which included: separation from parents and family; unfamiliar environment; investigations and treatments; and loss of self-determination. The children's loss of self-determination over personal needs exacerbated their fears and concerns. It needs to be recognized that compliance with hospital routines is a variable, which influences children's reaction to hospitalization. The findings clearly indicate that children need adequate information tailored to their needs, that their views are sought in the planning and delivery of their care and that hospital environments need to be made more child-centred. Interventions designed to reduce children's stress during hospitalization are not only likely to decrease their stress at the time, but also likely to influence how future experiences are appraised and managed.
Children’s representatives in psychiatric services: What is the outcome?
Östman, M., & Afzelius, M.
(2011)
Background: Psychiatric services have established children's representatives in an effort to support children of mentally ill patients.
Material: Twenty two specially designated children's representatives and 19 other staff members were asked how they conceived the role of children's representatives and if those representatives had the responsibility of identifying children of mentally ill patients.
Discussion: Children's representatives expressed difficulty in functioning as advocates for children whose parents were being treated for mental illness. Members of the psychiatric staff, although aware their patients had children, seldom met them since they focused on the adults.
Conclusions: More than one third of all patients seeking psychiatric care have children, yet children's representatives and other staff members seldom meet them.
Combining informal care and work: supporting carers in the workplace
Arksey H.
(2002)
The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.
Community participation patterns among preschool-aged children who have received Part C early intervention services
Khetani M, Graham JE, Alvord C.
(2013)
Background
We examined activity-specific patterns and child, family and environmental correlates of participation restriction in nine community-based activities among preschoolers with disabilities who have received Part C early intervention services.
Methods
Data were gathered from a subsample of 1509 caregivers whose children (mean age = 67.7 months) had enrolled in the National Early Intervention Longitudinal Study (NEILS) and completed a 40-min computerized telephone interview or 12-page mailed survey. Data were analysed on cases with complete data on the variables of interest. Bivariate relationships were examined between variables, including patterns of co-reporting participation difficulties for pairs of community activities.
Results
Caregivers were more than twice as likely to report difficulty in one activity (20%) than difficulties in 2–3, 4–5, or 6–9 activities. Co-reporting paired difficulties was strong for activities pertaining to neighbourhood outings but less conclusive for community-sponsored activities and recreation and leisure activities. Our data show strong and positive associations between child functional limitations in mobility, toileting, feeding, speech, safety awareness, and friendships and participation difficulty in 7–9 activities. Lower household income was associated with participation difficulty in 7 out of 9 activities and difficulty managing problematic behaviour was strongly associated with participation difficulty in all 9 activities. Each of the three environmental variables (limited access to social support, transportation and respite) was associated with participation restrictions in all nine activities.
Conclusion
Results provide practitioners with detailed descriptive knowledge about modifiable factors related to the child, family and environment for promoting young children's community participation, as well information to support development of a comprehensive assessment tool for research and intervention planning to promote community participation for children enrolled in early intervention.
Coping, stress resistance, and growth: Conceptualizing adaptive functioning
Holahan, CJ., Moos, RH., & Schaefer. JA.
(1996)
ABSTRACT analyze the coping process, emphasizing the relevance of coping research to understanding adaptive functioning more generally / begin by considering general conceptualizations of coping, and present an integrative conceptual approach / describe the relation between different coping strategies and adaptive functioning / present 2 models of adaptive functioning—reflecting both stress resistance and crisis growth—that depend on coping as a central mechanism / highlight key issues that refine our general understanding of coping and adaptation.
Decreasing the risk of complicated bereavement and future psychiatric disorders in children
Kirwin, K.M. & Hamrin, V.
(2005)
Abstract
TOPIC:
Decreasing the risk of complicated bereavement and future psychiatric disorders in children.
PURPOSE:
This literature will determine what major factors influence a child's response to death and to understand how children react to the death of a parent at different developmental stages. It will evaluate the following: a) What are children's emotional responses to the death of a parent? b) How can a surviving parent help the grieving child complete the tasks of grieving? c) What skills are important for a parent to learn in order to help the grieving child through the tasks of grieving and d) How can mental health providers help the grieving family and the grieving child?
SOURCES:
Relevant literature from child psychiatry, child psychology, and nursing.
CONCLUSIONS:
The death of a parent is a major stressful event for children and their families. This traumatic event can bring serious psychological and social distress to bereaved children and their families. Children who are not supported in the early phases of grieving can develop serious emotional and behavioral problems that can lead to the development of some major psychiatric disorders. Providing early prevention support programs for surviving parents and bereaved children can help both the parents and the children adapt to their losses. These structured programs can decrease the risk of complicated grief in bereaved families. More research studies are needed to validate the effectiveness of these early prevention program interventions.
Det moderna föräldraskapet – en studie av familj och kön i förändring
Bäck-Wiklund, Margareta & Bergsten, Birgitta
(1997)
Den moderna förälderns lott är att ständigt reflektera över sig själv - som förälder, som partner, som könsvarelse osv. Värderingarna hemma och på jobbet är olika, kraven från båda håll är alltid stora och kvinna och man förväntas leva jämlikt. Föräldrar i dag känner sig splittrade och otillräckliga. I denna mångtydiga situation måste vardagen fungera. Det är då de traditionella rollerna kommer till användning igen, men på nya villkor.
De flesta i vårt land säger sig stå bakom ett jämställdhetsideal, men hur lever vi egentligen i praktiken? Den här boken lyfter fram familjen som en plats där jämlikheten sätts på undantag. Boken består av två delar. Den första handlar om den svenska välfärdsstaten i ett familjeperspektiv och kulturella föreställningar kring kvinnligt och manligt. Teorier om familj, kön och föräldraskap i det moderna samhället presenteras och problem inom den empiriska forskningen diskuteras.
I del två analyseras hur vardagen ter sig för ett trettiotal unga barnfamiljer som författarna följt under mer än två år. Resultatet visar hur svenska föräldrar ser på bland annat barnuppfostran, hem- och lönearbete, kvinnligt respektive manligt. Samtliga föräldrar sätter upp barnens bästa som det viktigaste målet i sina liv, men mödrarna väljer andra sätt att förverkliga det än fäderna. I ett särskilt avsnitt analyseras moderskapet. Där framträder det dåliga samvetet som ett tidens tecken och att säkerhet i modersrollen nästan alltid förutsätter en trygg förankring på arbetsmarknaden.
Det tårdränkta barnet : min berättelse om att bli pappa till ett barn med utvecklingsstörning
Karlsudd Peter
(2015)
VARFÖR DENNA BOK?Den här boken påbörjades för tjugofyra år sedan. Då kom vår tredje dotter Lisa till världen och hela vår familjesituation förändrades i grunden. Lisa föddes med funktionsnedsättningen Downs syndrom, eller mongolism, som många felaktigt kallar det. Under Lisas första månader skrev jag ner mina tankar och reaktioner i form av anteckningar och dikter. Mycket text kring förtvivlan, sorg, skam, ilska, hopp, kärlek och det som jag, och säkert andra mycket tidigare än jag själv, uppfattade som självömkan.Efter några månader övergav jag mitt skrivande, troligen för att jag inte hade samma uttrycksbehov. Men säkert också för att mitt samvete inte ville konfronteras med mina formuleringar. Behovet av att skriva dikter avtog. När jag sjutton år senare hittade en gammal utskrift av mina anteckningar föddes idén om att fullfölja berättelsen fram till dags dato. En fortsättning på en historia som varit arbetsam, men som stärkt vår familj och gett oss särskilda erfarenheter och livskvaliteter. En viktig anledning till att nu avsluta berättelsen var att söka en förklaring till varför jag reagerade som jag gjorde när Lisa föddes. Var mina reaktioner ovanliga? Kunde andra uppleva situationen på liknande sätt? Samtidigt sporrades jag av en slags nyttoinriktad ambition att få andra att förstå min upplevelse: I ett av mina lyckligaste ögonblick ställs jag inför faktumet, att vårt nyfödda barn har en funktionsnedsättning. Så den här boken blir främst en personlig vittnesbörd. Men den som tagit del av den vill säkert gå vidare, vidga sin kunskap och få veta mera. Boken avslutas därför med en referenslista över vetenskaplig litteratur och information kring mitt ämne. Jag hoppas att detta kan inspirera till vidare läsning och diskussion. Vid varje kapitelslut finns korta sammanställningar av fakta eller refererat av det viktigaste jag läst. Forskning vill ju annars alltid bli för lång, det är därför den blir vad den ska vara, i bästa fall: Ögonöppnande, och utan slut. För den som vill koppla bokens innehåll till utbildning finns ett textmaterial: "Det tårdränkta barnet. Forskningsgenomgång, diskussionsfrågor och förslag till arbets- och fördjupningsuppgifter", som lätt kan laddas hem på webbadressen karlsudd.se. Här kan du även se Lisas bilder i färg.Min berättelse här bygger alltså på mina personliga erfarenheter. Jag vill betona det, allt jag skriver får givetvis stå för mig. Jag har försökt anstränga mig för att göra rättvisa åt övriga familjemedlemmars minnesbilder. Under fem somrar har jag försökt slutföra texten, men inte lyckats. Eftersom Lisas utveckling gått bakåt de senaste åren har det varit svårt att skriva om den tid som varit. Om du läser den här texten omgiven av ett bokomslag, har jag trots detta lyckats i mina föresatser.Boken tillägnar jag Lisa - vår underbara dotter och syster som har gett oss så mycket glädje, kärlek och insikter i livet. Som vi alltid säger till henne vid läggdags: VI ÄR STOLTA ÖVER DIG, VI ÄR RÄDDA OM DIG OCH VI ÄLSKAR DIG.Pappa Peter, med uppmuntran från mamma Marie och storasystrarna Anna-Mi och Hanna.Karlsnäs, 2014
Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders
Flyckt L, Fatouros-Bergman H, Koernig T.
(2015)
BACKGROUND: In a previous study, the objective burden of informal caregiving to
patients with psychotic disorders amounted to 22 hours/week, and the subjective
burden was huge with predominately anxiety and depression as main symptoms. In
this study, determinants of the informal caregiving burden are analyzed to find
foci for interventions to ease the size of burden.
METHODS: Patients with psychotic disorders (n = 107) and their informal
caregivers (n = 118) were included. They were assessed with a comprehensive
battery of rating scales including patient and caregiver characteristics as well
as the amount and quality of health-care provision.
RESULTS: A multiple linear regression analysis showed that the subjective burden
was significantly lower when patients had higher levels of functioning and when
the health status of the informal caregivers was good. No significant
determinants were found for the objective burden, but an association was found
between a higher socioeconomic status of the caregivers and the amount of money
provided for the patient. An association was also found between a positive
perception of caregiving and more hours spent on caregiving.
CONCLUSION: The functioning level of the patients was the main determinant of the
subjective burden of informal care. For the objective burden, no main determinant
was found.
Developing new strategies to support future caregivers of the aged in Canada: Projections of need and their policy implications
Keefe J, Légaré J, Carrière Y.
(2007)
Projections of future need for Canadian continuing care services typically uses current utilization patterns and population aging. Accurately assessing this need is much more complex since disability patterns among the elderly are changing and availability of caregivers is affected by changes in family structure. This paper projects annual growth rates between 2001-2031 in the need for informal and formal support among elderly Canadians and discusses the policy implications of the increasing demand for informal caregivers. Using Statistics Canada's LifePaths micro-simulation model, these projections incorporate disability rates and the potential availability of informal caregivers. The authors conclude that continued focus on family to meet the needs of elderly Canadians without increased support is not sustainable in the long term. New strategies to support Canadian caregivers are proposed and their economic feasibility in the public and private markets are evaluated (abstract from p. 4 of report).
Differentiation among types of intimate partner violence: research update and implications for interventions
Kelly, Joan B, & Johnson, M P.
(2008)
A growing body of empirical research has demonstrated that intimate partner violence is not a unitary phenomenon and that types of domestic violence can be differentiated with respect to partner dynamics, context, and consequences. Four patterns of violence are described: Coercive Controlling Violence, Violent Resistance, Situational Couple Violence, and Separation-Instigated Violence. The controversial matter of gender symmetry and asymmetry in intimate partner violence is discussed in terms of sampling differences and methodological limitations. Implications of differentiation among types of domestic violence include the need for improved screening measures and procedures in civil, family, and criminal court and the possibility of better decision making, appropriate sanctions, and more effective treatment programs tailored to the characteristics of different types of partner violence. In family court, reliable differentiation should provide the basis for determining what safeguards are necessary and what types of parenting plans are appropriate to ensure healthy outcomes for children and parent–child relationships.
Do Young Carers Deserve Justice? Young Caring in the Context of Illness
Sahoo, R., & Suar, D.
(2009)
Though there is a lot of discussion on carers' issue, young caring is still ignored and many facts remain unknown to us, which need to be revealed. Children or young people who provide continuous care for ill or disabled parents, siblings or any other family members are young carers. This raises several issues related to justice in the context of the young. Caring has its rewards and difficulties. This paper reviews the literature on informal caregiving for ill family members in order to explore caring concept in children's mind and how young caring varies with age, sex, types of illness and different family situations from the perspective of children and parents. Causes and consequences of young caring have been explored. Agenda for future research is suggested.
Does grief counseling work?
Jordan, J.R. & Neimeyer, R.A.
(2003)
Most bereavement caregivers accept as a truism that their interventions are helpful. However, an examination of the bereavement intervention literature suggests that the scientific basis for accepting the efficacy of grief counseling may be quite weak. This article summarizes the findings of four recent qualitative and quantitative reviews of the bereavement intervention literature. It then discusses three possible explanations for these surprising findings and concludes with recommendations for both researchers and clinicians in thanatology that could help to focus efforts to answer the questions of when and for whom grief counseling is helpful.
Does individual treatment for alcoholic fathers benefit their children? A longitudinal assessment
Andreas JB, O'Farrell TJ, Fals-Stewart W.
(2006)
Psychosocial adjustment in children of alcoholics (COAs; N = 125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Doktorn kunde inte riktigt laga mig : barn om sjukdom och funktionshinder och om hur vi kan hjälpa
Renlund, Christina
(2007)
Den här boken handlar om små barn som har svåra sjukdomar eller funktionsnedsättningar. Vad betyder det för ett litet barn att inte kunna gå och springa, att inte kunna se, att ha trassliga och krångliga tankar, att vara annorlunda? Christina Renlund visar hur vi kan hjälpa barnen att våga berätta om sina tankar och komma med sina frågor.
Du får väl säga som det är
Renlund Christina
(2017)
Du får väl säga som det är handlar om att vara anhörig och leva nära. Om vårt behov av varandra, om sårbarhet och kraft, om mod och rädsla och om hopp och stora livsfrågor. Det är också en bok om stolthet, tillit, livsglädje och drömmar och om de mirakel som finns i vardagen nära dem vi älskar, om de små miraklen och de stora. Vad vi kan få om vi förmår ta emot.
Föräldrars berättelser. Syskons uppväxt och frågor. Mor- och farföräldras oro och stolthet. Mostrar, fastrar, morbröder och andra närstående. De skriver om kärleken och sorgen, om vardagen, den sällsynta diagnosen och funktionsnedsättningen, om sina tankar och om det som är allra viktigast i livet - relationer, människovärde och mening.
Alla ger de oss något av det finaste de har - sin berättelse. Det är enkelt, det är vardagligt , det är storslaget. Det är en bok om vad det är att vara människa.
Skribenter: Siri Ambjörnsson, Nathalie Besèr, Zenzi Brydolf, Kristina Colliander, Axel Danielson, Frank Ekelund, Miriam Ennefors, Per Feltzin, Pernilla Glaser, Ingrid Hellegren, Imke Janoschek, Håkan Johansson, Jesper Larsson, Kristina Lindh, Gunilla Malm, Anna och Mikael Nordmark, Helene Näslund, Erika Ohlsson, Alexander Persson, Giuseppe Pozzi och Åsa Llinares Norlin, Gunnar Skarland, Arziv Suhak, Kristina och Thomas Taylor, Fredrik Westin
Du´er utviklingshemmede som foreldre?
Faureholm, Jytte
(1994)
Early understanding and production of graphic symbols
Callaghan, T. C.
(1999)
Young children's ability to understand and produce graphic symbols within an environment of social communication was investigated in two experiments. Children aged 2, 3, and 4 years produced graphic symbols of simple objects on their own, used them in a social communicative game, and responded to experimenter's symbols. In Experiment 1 (N = 48), 2-year-olds did not effectively produce symbols or use the experimenter's symbols in the choice task, whereas 3- and 4-year-olds improved their drawings following the game and performed above chance with the experimenter's symbols. Ability to produce an effective graphic symbol was correlated with success on a task that measured understanding of the experimenter's symbols, supporting the claim that children's ability to produce a graphic symbol rests on the understanding of the symbolic function of pictures. In Experiment 2, 32 children aged 3 and 4 years improved their third set of drawings when they received feedback that their drawings were not effective communications. The results suggest that production and understanding of graphic symbols can be facilitated by the same social factors that improve verbal symbolic abilities, thereby raising the question of domain specificity in symbolic development.
Early Violence Exposure and Self-Regulatory Development: A Bioecological Systems Perspective
McCoy, D. C.
(2013)
Each year, thousands of American children are exposed to violence in their homes and communities. Although research in multiple fields has shown this violence to have severe and negative consequences for children's self-regulation, this work lacks a unified theoretical orientation that sufficiently captures the complexity of these relationships. Using a bioecological systems framework, the present article presents a multidimensional model of the relationship between children's exposure to violence and their self-regulatory development. Specifically, this model considers: (a) different dimensions of exposure (including chronicity, pervasiveness, and proximity); (b) child- and family-level mediating mechanisms (including biological stress-response systems and parenting); (c) the transactional, multidirectional nature of these relationships; and (d) the ways in which individual and environmental factors may contribute to multifinality. Finally, the present article also proposes a number of methodological and conceptual suggestions for strengthening future research in the area of violence, self-regulation, and psychosocial risk.
Easy targets: a disability rights perspective on the ‘children as carers’ debate
Keith, L., & Morris, J.
(1995)
This article looks at how the children of disabled parents are being defined as 'young carers', arguing that the way in which this is hap pening undermines both the rights of children and the rights of disabled people, Analysis of the social construction of 'children as carers' illustrates that researchers and pressure groups are colluding with the government's insistence that 'care in the community' must mean 'care by the community'.
Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial
Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM
(2015)
BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.
Effectiveness of telecare in elderly populations - A comparison of three settings
Onor, M. L., Trevisiol, M., Urciuoli, O., Misan, S., Bertossi, F., Tirone, G., et al.
(2008)
The primary aim of this study was to assess the level of satisfaction with 3 types of formal care systems of the elderly: (1) a day care center, (2) a nursing home, and (3) telecare service in a group of oldest frail elderly, and to describe the characteristics of the population using the services. The study involved a population of 162 oldest elderly using 3 different types of formal care services. Study participants were asked to complete a questionnaire, investigating socio-demographic characteristics and degree of overall satisfaction with the service, as well as eliciting possible suggestions for improvement. In our study, nearly all subjects using the telecare service were satisfied or very satisfied (98.5%), as compared to 75.3% of those residing in a nursing home, and 76.5% of those attending the day care center. This result confirms the findings of previous studies on elderly subjects satisfaction with telecare services. Telecare, therefore, seems to be the service achieving the greatest levels of satisfaction, a service that can also be used by low-income subjects, by whom it is also perceived as a source of social support.
Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome
Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y.
(2013)
This project was supported, in part, by Early Childhood Special Education Doctoral Leadership Training Grant H325D070075 and KIDTALK TACTICS Model Demonstration Center on Early Childhood Language Intervention Grant H326M070004.
PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).
MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.
ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.
ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.
Efficacy trial of a brief cognitivebehavioral depression prevention program for high-risk adolescents: effects at 1- and 2-year follow-up
Stice, E., Rohde, P., Gau, J. & Wade, E.
(2010)
Abstract
OBJECTIVE:
To evaluate the effects of a brief group cognitive-behavioral (CB) depression prevention program for high-risk adolescents with elevated depressive symptoms at 1- and 2-year follow-up.
METHOD:
In this indicated prevention trial, 341 at-risk youths were randomized to a group CB intervention, group supportive expressive intervention, CB bibliotherapy, or educational brochure control condition.
RESULTS:
Significantly greater reductions in depressive symptoms were shown by group CB participants relative to brochure control participants by 1-year follow-up and bibliotherapy participants by 1- and 2-year follow-up but not relative to supportive expressive participants. Supportive expressive participants showed greater symptom reduction than CB bibliotherapy participants did at 2-year follow-up. Risk for onset of major or minor depression over the 2-year follow-up was significantly lower for group CB participants (14%; odds ratio = 2.2) and CB bibliotherapy participants (3%; odds ratio = 8.1) than for brochure controls (23%).
CONCLUSIONS:
Results indicate that this group CB intervention reduces initial symptoms and risk for future depressive episodes, although both supportive expressive therapy and CB bibliotherapy also produce intervention effects that persist long term. Indeed, CB bibliotherapy emerged as the least expensive method of reducing risk for future episodes of depression.
Emanuel Miller lecture: Confusions and controversies about Asperger syndrome
Frith, Uta
(2004)
BACKGROUND:
Hans Asperger drew attention to individuals who show the core symptoms of autism in the presence of high verbal intelligence.
METHODS:
A review of the literature explores current issues concerning the diagnosis and nature of Asperger syndrome.
RESULTS:
The behavioural and neurophysiological evidence to date suggests that Asperger syndrome is a variant of autism typically occurring in high-functioning individuals, and not a separate disorder. One of the problems of diagnosis is that the typical impairment of social communication may be difficult to identify in early childhood, and can be camouflaged in adulthood by compensatory learning. The range and nature of the social impairments in Asperger syndrome are still in need of investigation, but appear to be less severe than in autism. Experimental evidence suggests that individuals with Asperger syndrome may lack an intuitive theory of mind (mentalising), but may be able to acquire an explicit theory of mind. Brain imaging studies pinpoint a network that links medial prefrontal and temporal cortex as the neural substrate of intuitive mentalising. This network shows reduced activation and poor connectivity in Asperger syndrome. While some individuals with Asperger syndrome have written eloquently about their lives, their ability to talk about their own emotions appears to be impaired (alexithymia). This impairment may be linked to depression and anxiety, which is common in adulthood. Little is as yet known about the often considerable cognitive strengths in Asperger syndrome, or about the difficulties observed in higher-level executive skills.
CONCLUSIONS:
Studies are needed that define the developmental course of the disorder and the nature of the strengths and weaknesses in both social and non-social domains. This requires more sensitive assessment instruments than are currently available. Questions about the prevalence of Asperger syndrome, about associated and secondary features, and about optimal education and management, urgently call for such studies.
Engagement in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development
Axelsson AK, Granlund M, Wilder J.
(2013)
BACKGROUND:
Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared.
METHODS:
A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test.
RESULTS:
Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities.
CONCLUSIONS:
Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning.
Engagerade medborgare blir allt fler : Allt fler hjälper en nära anhörig eller en granne : Det informella obetalda hjälparbetet har ökat de senaste fjorton åren visar olika studier : Tema : Att vara anhörig.
Raune, I.
(2006)
Evaluation of a Swedish version of the Strengthening Families Programme
Skärstrand E, Sundell K, Andréasson S.
(2014)
BACKGROUND:
Adolescents' alcohol consumption is a public health concern in Sweden as well as in many other countries. Underage drinking is associated with increased risks of alcohol-related injuries, risky sexual behaviours and dependence later in life. Different strategies have been used in the effort to prevent this behaviour, and to postpone the onset of alcohol. The Strengthening Families Programme 10-14 (SFP 10-14) from the USA has been highlighted as one of the more effective prevention programmes. The aim of the present article was to evaluate the effectiveness of a culturally adapted Swedish version of the SFP 10-14.
METHODS:
This was a cluster randomized controlled trial including 587 sixth-grade students (age 12) and their parents in 19 elementary schools in Stockholm. Schools were randomly assigned to either control (9 schools, 216 students) or to the family skills training intervention (10 schools, 371 students). The SFP Swedish version consisted of two parts with seven and five sessions, respectively, held separately for youths and parents except two joint family sessions. Measures of students' self-reported episodes of drunkenness, smoking, illicit drug use and other norm-breaking behaviours were collected at baseline (March 2003) and at three subsequent yearly surveys. Data were analysed using multilevel models with an intention-to-treat approach.
RESULTS:
No preventive effects were found for smoking, alcohol and illicit drug use and other norm-breaking behaviours, nor did moderators affect the outcome.
CONCLUSION:
The Swedish version of the SFP 10-14 was not effective in preventing youths' substance use in a Swedish context.
Evaluation of a therapeutic residential intervention for traumatically bereaved children and young people
Trickey, D. & Nugus, D.
(2011)
ABSTRACT Child bereavement interventions are rarely subjected to rigorous evaluation, so there is scant evidence in the literature to support their efficacy. This article reports the evaluation of a residential group programme developed by the UK charity Winston's Wish for children and young people and their parents/carers bereaved in traumatic circumstances (murder or manslaughter). A number of validated psychometric measures were taken pre- and post-intervention, and the results indicated positive outcomes for participants. Further research is needed to shed more light on which aspects of bereavement interventions are effective for which children and young people. However, the study does demonstrate that it is possible to conduct scientifically objective and rigorous evaluations of bereavement work with children and young people.
Everyday activity settings, natural learning environments, and early intervention practices
Dunst CJ, Bruder MB, Trivette CM, Hamby DW.
(2006)
Findings from two studies examining the parent and child outcomes associated with different ways of conceptualizing natural learning environment early intervention practices are presented. One sample in each study was asked to indicate the extent to which early intervention practitioners implemented their interventions in everyday family or community activities, and one sample in each study was asked to indicate the extent to which everyday family or community activities were used as sources of child learning opportunities. Results from both studies showed that using everyday activities as sources of children's learning opportunities were associated with positive benefits, whereas practitioners' implementing their interventions in everyday activities showed little or no positive benefits, and in several cases, had negative consequences. Results are discussed in terms of the need to carefully consider how and in what manner natural learning environment practices are operationalized by early intervention practitioners.
Everyday Life Situations of School-aged Children with Severe Disabilities: What are the goals for the future? An exploratory study.
Adolfsson M, Westerberg C, Möller K.
(2014)
This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure
environments for a group of school-aged children with severe disabilities, including complex disorders and a combination
of disabilities. The purpose was to explore universal ELS; clarify how the children can be supported in their development
of autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all
reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version
(ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and
participation in school or work were of highest importance, but few reported ELS involved directly interacting with other
children. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore,
interventions would be focused on the overall goal that children with severe disabilities take initiatives to become
independent and to form relationships with others.
Exit and Voice. An Investigation of Care Service Users in Austria, Belgium, Italy and Northern Ireland
Egger de Campo M.
(2007)
The past decades have seen an introduction of market elements in the provision of social care services (Finer 1999; Mabbett and Bolderson 1999). Welfare state reforms all over Europe have produced welfare pluralism and claims that the increased choice will enhance user participation, promote older persons' autonomy, and improve the quality of services. Within the Fifth FP Research Project CARMA (Care for the Aged at Risk of Marginalization) a case study among users of care services in Austria, Belgium, Italy, and Northern Ireland was conducted that focussed on friction and conflict between clients and service providers and investigated the reasons for discharge and denial of admission to a service. The data from this study can be interpreted in terms of Hirschman's (Exit, voice, and loyalty: responses to decline in firms, organizations, and states. Harvard University Press, Cambridge, 1970) theory on 'exit' and 'voice' as expressions of consumers' dissatisfaction with the quality of a product. Data were collected in different systems offering a variety of procedures for exit from one provider and the choice of a competitor. Also different practices of handling voice i.e., complaints have been documented. The paper questions to what extent various possibilities for exit and voice can enhance users' autonomy and increase the quality of the service supply. It thus contributes empirical findings to a debate that often emphasizes ideological arguments.
Exploring the impact of parental post-traumatic stress disorder on military family children: A review of the literature
King, N., & Smith, A.
(2016)
OBJECTIVES:
The number of UK service personnel who have a diagnosis of PTSD is unclear, but there has been a recent increase in referrals to services for PTSD symptomology. It is imperative to understand the impact this may have on the children of affected service families. This review of literature aimed to explore and provide insight into the experiences of services children whose parent has a diagnosis of PTSD.
DESIGN:
A comprehensive review of the literature.
DATA SOURCES:
Online databases CINAHL, MEDLINE, psychARTICLES, The Psychology and Behavioural Sciences Collection and PILOTS were searched.
REVIEW METHODS:
The studies were chosen in keeping with a specified inclusion and exclusion criteria. The literature was critically analysed and key themes identified through the strategy of thematic analysis.
RESULTS:
Five studies met the inclusion criteria. Three key themes were identified from the five articles; secondary traumatisation; impact on the child's mental health; and impact on the child's adult relationships.
CONCLUSION:
The findings highlighted the prevalence of secondary traumatisation and a potential negative impact on the child's mental health and relationships. However, literature used in the review was conducted in countries outside of the UK, therefore the comparison of results may be compromised. This review identifies the paucity of research on this topic and highlights the need for UK based research to be carried out in this area.
Exposure to family violence in young at-risk children: A longitudinal look at the effects of victimization and witnessed physical and psychological aggression
Litrownik, A. J., Newton, R., Hunter, W. M., English, D., & Everson, M. D.
(2003)
This study examines the contribution of specific types of family violence exposure (e.g., victim vs. witness; physical vs. psychological) to aggressive and anxious/depressed problem behaviors in young (i.e., 6-year-old) at-risk children. This multisite prospective study of 682 children from four different regions of the country asked mothers and their 6-year-old children to report on violence exposure in their families. After controlling for mother reports of child problem behaviors on the Child Behavior Checklist at Age 4, it was found that subsequent exposure to family violence predicted reported problem behaviors at Age 6. Although mothers' report of child victimization predicted subsequent problem behaviors, witnessed violence was related to these problems only when both mothers and children reported its occurrence. The results of this study suggest that even though there was a relationship between witnessed and directly experienced family violence, both had independent, noninteractive effects on subsequent behavior problems.
Externalizing Outcomes of Youth with and without ADHD: Time-Varying Prediction by Parental ADHD and Mediated Effects
Moroney, E., Tung, I., Brammer, W. A., Peris, T. S., & Lee, S. S.
(2016)
Although parental attention-deficit/hyperactivity disorder (ADHD) is a risk factor for multiple negative youth outcomes, it is unknown how change in parental ADHD symptoms over time affects change in child ADHD symptoms; moreover, mediators of these predictions are largely unknown. Parents of 230 5-10 year-old children (68 % male) with (n = 120) and without ADHD (n = 110) were followed prospectively for 6-7 years across three separate waves. Parents self-reported their ADHD and depression symptoms and similarly rated offspring ADHD, oppositional defiant disorder (ODD), and conduct disorder (CD) symptoms; youth self-reported their substance use. Temporally-ordered mediators consisted of parental expressed emotion (EE), derived from the Five Minute Speech Sample, and self-reported positive and negative parenting behavior. Controlling for key demographics and parental depression symptoms, increasing parental ADHD symptoms were a time-varying predictor of worsening youth ADHD and ODD, although it was unrelated to change in CD and alcohol/substance use. Next, although EE facets (i.e., criticism, emotional over-involvement) did not mediate these predictions, negative parenting behavior significantly mediated predictions of youth ADHD (and marginally in predictions of ODD) from parental ADHD symptoms. These quasi-experimental findings suggest that parental ADHD symptoms are a potential unique causal risk factor for offspring ADHD and ODD; also, preventing negative parenting behavior secondary to parental ADHD symptoms is critical to improve trajectories of youth ADHD and ODD. We consider parental ADHD symptoms and family factors underlying emergent externalizing problems utilizing a developmental psychopathology framework, including implications for intervention and prevention.
Facilitators and barriers for co-ordinated multi-agency services
Sloper, P.
(2004)
Background Greater collaboration between agencies and the need to improve interagency working is a key policy priority. The lack of co-ordinated multi-agency working in children's services has been highlighted in many research studies. Evidence on the facilitators of and barriers to such working and the outcomes for children and families of co-ordinated services is important to inform local developments.
Methods Literature on multi-agency working was reviewed as part of the evidence gathering to inform the Children's National Service Framework. Searches were mainly concentrated on existing reviews, plus recent studies which included children's services and were not covered by the reviews obtained.
Results There is little evidence on the effectiveness of multi-agency working itself or of different models of such working in producing improved outcomes for children and families. However, reviews of evidence on multi-agency working provide consistent findings on facilitators and barriers, including: clear aims, roles and responsibilities and timetables that are agreed between partners; a multi-agency steering group, commitment at all levels of the organizations involved and good systems of communication and information sharing, including IT systems, are central; support and training for staff in new ways of working is needed. There is some evidence that interprofessional programmes of continuing education can help to remove barriers to joint working.
Conclusions Existing research provides useful information for organizations developing multi-agency services. However, there is a need for methodologically sound research which investigates the outcomes of different models of multi-agency working in services for children, includes assessment of cost effectiveness, and explores the ways in which the factors identified as facilitating multi-agency working relate to outcomes.
Families under the microscope: parallels between the young carers debate of the 1990s and the transformation of childhood in the late nineteenth century
Olsen, R.
(2009)
Existing analysis and discussion about young carers—children caring for ill or disabled family members—has been limited in scope, concentrating on narrow policy and service issues. In this paper, I attempt to introduce a more historical perspective to these debates, by comparing responses to the issue of young caring in the 1990s to resistance encountered in the implementation of child labour and education reforms towards the end of the nineteenth century. I discuss the parallel ways in which the quality of childhood for some children became problematised without sufficient recognition of the limited choices that some families face. Copyright © 2000 John Wiley & Sons, Ltd.
Liggande dans : en metodguide i att starta en grupp för personer med flerfunktionsnedsättning
Hagström, Kerstin
(2011)
Lived experiences of being a father of an adult child with Schizofrenia
Nyström M, Svensson H.
(2004)
The aim of this study is to analyze and describe lived experiences of being a father of an adult child with schizophrenia. Interpretations of interviews with seven Swedish fathers of sons or daughters with schizophrenia revealed a pattern of gradually changing existential consequences. After an initial period of shock when receiving the diagnosis, a long struggle to regain control follows. The findings are presented in a structure based on eight different aspects of this struggle, which seems to be characterized by a balance between grieving and adaptation. An important conclusion is that the fathers' life-world must be attended to in professional family interventions.
Living with Schizophrenia from the perspective of outpatients and their parents
Foldemo, Annica
(2004)
Akademisk avhandling
The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life.
Lokal modell för samordnad vård och omsorg kring personer med demenssjukdom samt stöd till deras anhöriga
Ekerö kommun
(2013)
Longitudinal mediators of a randomized prevention program effect on cortisol for youth from parentally bereaved families
Luecken, L., Hagan, M.J, Sandler, I.N., Tein, J., Ayers, T.S., & Wolchik, S.A.
(2014)
Abstract
We recently reported that a randomized controlled trial of a family-focused intervention for parentally bereaved youth predicted higher cortisol output 6 years later relative to a control group of bereaved youth (Luecken et al., Psychoneuroendocrinology 35, 785-789, 2010). The current study evaluated longitudinal mediators of the intervention effect on cortisol 6 years later. Parentally bereaved children (N = 139; mean age, 11.4; SD = 2.4; age range = 8-16 years; male; 61% Caucasian, 17% Hispanic, 7% African American, and 15% other ethnicities) were randomly assigned to the 12-week preventive intervention (n = 78) or a self-study control (n = 61) condition. Six years later (mean age, 17.5; SD, 2.4), cortisol was sampled as youth participated in a parent-child conflict interaction task. Using four waves of data across the 6 years, longitudinal mediators of the program impact on cortisol were evaluated. Program-induced increases in positive parenting, decreases in child exposure to negative life events, and lower externalizing symptoms significantly mediated the intervention effect on cortisol 6 years later.
Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities
Hastings, Richard, P.
(2007)
Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.
Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?
van den Heuvel ET, Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B.
(2002)
In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.
Loss and grief in patients with Schizophrenia: Onliving in another world
Mauritz M, Van Meijel B.
(2009)
AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.
Lära som vuxen.
Bron, Agnieszka & Wilhelmson, Lena
(2005)
Manual for the ASEBA Preschool Forms and Profiles
Achenbach TM, Rescorla LA.
(2000)
The Manual for the ASEBA preschool forms & profiles explains the development, standardization, applications, & profiles for the CBCL//l½-5 and C-TRF. The Manual also provides reliability & validity data, case illustrations, problem prevalence rates, scale scores, scoring instructions, & answers to common questions. 180 pp.
Mapping images to objects by young adults with cognitive disabilities
Carmien, S. & Wohldman E.
(2008)
How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.
Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences.
Meagher G, Szebehely M, editors
(2013)
The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.
'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners.
Gosman-Hedstrom G, Dahlin-Ivanoff S.
(2012)
INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.
Med rätt att bestämma själv? – ”exit”, ”voice” och personlig assistans
Hugemark, Agneta
(2004)
This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.
Mediation of the effects of the Family Bereavement Program on mental health problems of bereaved children and adolescents
Tein, J., Sandler, I.N., Ayers, T.S., & Wolchik, S.A.
(2006)
This study presents an analysis of mediation of the effects of the Family Bereavement Program (FBP) to improve mental health outcomes of girls at 11 months following program participation. The FBP was designed based on a theory that program-induced change in multiple child and family level mediators would lead to reductions in children's mental health problems. Mediational models were tested using a three wave and a two wave longitudinal design. Using a three wave longitudinal design, FBP effects on three variables at T2 (increased positive parenting, decreased negative events, and decreased inhibition of emotional expression) were found to mediate the effects of the FBP on mental health problems at 11-month follow-up. Using a two-wave longitudinal design, support was found for FBP effects on three additional variables at 11-month follow-up (increased positive coping, decreased negative thoughts about stressors, and decreased unknown control beliefs) to mediate program effects to reduce mental health problems at 11-month follow-up. The discussion focuses on theoretical explanations for the mediational effects and on implications for identifying "core components" of the FBP that are responsible for its effects to reduce mental health problems of girls.
Min syster fick Alzheimer – om vård och bemötande ur ett anhörigperspektiv
Andersson, Irene
(2011)
Moniqa Andersson är bara 58 år då hon får diagnosen Alzheimers sjukdom. I boken Min syster fick Alzheimer - om vård och bemötande ur ett anhörigperspektiv beskriver hennes syster, bokens författare, hur hon går bredvid genom sjukdomsförloppet och kämpar för att Moniqa ska få en trygg och fungerande vård på ett demensboende. Min syster fick Alzheimer är inte bara en engagerad och personlig skildring av hur en demenssjukdom utvecklas och hur de närstående drabbas, den ger också en värdefull inblick i hur vårdsystemet fungerar. Iréne Andersson reflekterar träffsäkert över bemötandet inom den kommunala demensvården och psykiatrin samt ger ett antal konkreta råd om vad som skulle kunna förbättras. Hon problematiserar vidare begreppen "anhörig" och "anhörigsjukdom" samt tar upp frågor om identitet, etik och ansvar. Här kommer många anhöriga och närstående att känna igen sig och få stöd. Författarens iakttagelser gör också boken särskilt intressant för personal i kommun och landsting. Iréne Andersson arbetar som lektor vid Malmö högskola med utbildningsvetenskap samt forskar om genus och fredshistoria. Hon är även flitigt anlitad av Alzheimerföreningen som föreläsare.
Mot en refamilisering av svensk äldreomsorg?
Sand, Ann-Britt
(2007)
Motivation for Money and Care that Adult Children Provide for Parents: Evidence from “Point-Blank” Survey Questions. Working Paper 2004-17
Cox, D. and B. Soldo
(2004)
When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.
Mönster i anhörigomsorgen: En uppföljning i Mullsjö 2010
Malmberg, B. and G. Sundström
(2012)
Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009).
År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig.
I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.
Negotiating family responsibilities
Finch, J. and J. Mason
(1993)
Negotiating Family Responsibilitiesprovides a major new insight into contemporary family life, particularly kin relationships outside the nuclear family. While many people believe that the real meaning of 'family' has shrunk to the nuclear family household, there is considerable evidence to suggest that relationships with the wider kin group remain an important part of most people's lives.
Based on the findings of a major study of kinship, and including lively verbatim accounts of conversations with family members concepts of responsibility and obligation within family life are examined and the authors expand theories on the nature of assistance within families and argue that it is negotiated over time rather than given automatically.
Närstående till personer med psykiska problem - deras livssituation och erfarenhet av kontakt med psykiatrisk vård
Ewertzon, M.
(1999)
Närståendes upplevelser av att överlämna omvårdnad av person med demens till professionella vårdare: en litteraturstudie [C-uppsats]
Jonsson, T. & Karlsson, I.
(2006)
Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.
Sowers KM, Ellis RA, Washington TA, Currant M.
(2002)
Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.
Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.
Sowers KM, Ellis RA, Washington TA, Currant M.
(2002)
Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.
Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review
Nock, M. K., & Ferriter, C.
(2005)
There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.
Parentally bereaved children and posttraumatic growth: insights from an etnographic study of a UK childhood bereavement service
Brewer, J. & Sparkes, A.
(2011)
Drawing on data generated from a two-year ethnographic study of the Rocky Centre (achildhood bereavement organisation in the UK), this article explores the positive changes and themes of posttraumatic growth experienced by parentally bereaved young people. Although the broader study generated data from participant observation, interviews and a documentary analysis, this article focuses specifically on the interviews with 13 young people to identify the themes of posttraumatic growth that emerged from the participants' narratives. Of these, four had been recently bereaved and nine had experienced the death of a parent over 10 years ago. Interviews were transcribed verbatim and analysed for themes that reflected the young people's experiences of growing through grief. Those identified were as follows: positive outlook, gratitude, appreciation of life, living life to the full, and altruism. Each theme isdiscussed in turn, and the implications of the findings for research and practice are addressed.
Paternal postpartum depression, its relationship to maternal postpartum depression, and implications for family health
Goodman, J.
(2004)
BACKGROUND:
Much attention has been paid to the problem of postpartum depression in women. However, there is some indication that men also experience depression after the birth of a child, and that paternal depression is linked to maternal depression.
AIMS:
The purpose of this integrative review was to examine current knowledge about postpartum depression in fathers. Specific aims were (1) to examine the incidence of paternal depression in the first year after the birth of a child, (2) to identify the characteristics and predictors of paternal postpartum depression, (3) to describe the relationship between maternal and paternal postpartum depression, and (4) to discuss the influence of paternal depression on the family and infant.
METHODS:
A literature search from 1980 to 2002 was carried out using the CINAHL, PsychInfo, and Medline electronic databases. Twenty research studies were identified that included incidence rates of paternal depression during the first year postpartum. These were further examined and synthesized regarding onset, severity, duration, and predictors of paternal depressive symptoms, and for information about the relationship between maternal and paternal depression.
FINDINGS:
During the first postpartum year, the incidence of paternal depression ranged from 1.2% to 25.5% in community samples, and from 24% to 50% among men whose partners were experiencing postpartum depression. Maternal depression was identified as the strongest predictor of paternal depression during the postpartum period. The implications of parental depression for family health were discussed.
CONCLUSIONS:
Postpartum depression in men is a significant problem. The strong correlation of paternal postpartum depression with maternal postpartum depression has important implications for family health and well-being. Consideration of postpartum depression in fathers as well as mothers, and consideration of co-occurrence of depression in couples, is an important next step in research and practice involving childbearing families.
Perceived burden, lived experiences and experiences of learning processes and illness management in parents of children with severe or moderate haemophilia
Myrin Westesson, Linda
(2019)
Doktorsavhandling
Haemophilia is a complex condition to manage, especially for parents of newly diagnosed children, and the illness affects the whole family. The parents are deeply involved in the child's treatment, as they frequently have to administer intravenous injections at home. The overall aim was to investigate perceived burden, lived experiences and to explore experiences of learning processes and illness management in parents of children with severe or moderate haemophilia. In studies I-III, a qualitative approach was motivated to describe experiences of parenting a child with haemophilia. Study III employed a longitudinal design to explore the learning process, while study IV employed a quantitative method with a cross-sectional survey. The results reveal that the mothers often needed to become reconciled both with the fact of the child's illness and their own carriership. However, having a child with severe or moderate haemophilia was life changing for both fathers and mothers. The parents were forced into a situation where they had to learn about and manage their child's illness in daily life. Thus, a desire to become independent of health care professionals in this respect emerged as a key incentive for learning. How this learning process developed and how long it took depended on different factors. For example, parents of children with past or present inhibitors reported higher perceived burden than parents of children without a history of inhibitors. Nevertheless, independently managing home treatment was essential for the parents to feel in control of their life-world again. One conclusion is that female carriers need more knowledge about their carriership and would benefit from counselling before starting a family. One suggestion is that acceptance of the child's illness and reconciliation with the new complex family situation could be promoted with person-centred care. Furthermore, the findings underline that health care professionals need to be aware of an increased burden on parents of young children and particularly the burden on parents of young children with inhibitors.
Personlighetsstörningar. Kliniska riktlinjer för utredning och behandling. Svensk Psykiatri nr 9.
Svenska Psykiatriska Föreningen
(2006)
Kliniska riktlinjer för personlighetsstörningar som nu presenteras är
nummer 9 i en serie av riktlinjer som framtagits i Svenska Psykiatriska
Föreningens regi sedan 1996. Tidigare har riktlinjer publicerats
med titlarna Schizofreni och schizofreniliknande tillstånd, Förstämningssjukdomar,
Ångestsyndrom, Alkoholproblem, Självmordsnära
patienter, Tvångsvård, Äldrepsykiatri och Ätstörningar. Dessa riktlinjer
kan beställas från Förlagshuset Gothia (www.gothia.verbum.se,
sök "psykiatri").
Människor med personlighetsstörningar har länge betraktats som
en svår patientgrupp då interaktionen med omgivningen ofta blir problematisk
och konfliktfylld. Personlighetsstörningar är vanligt förekommande
i den vuxna befolkningen. Prevalensen i vården är hög –
inte minst bland psykiatriska patienter – och samsjuklighet med andra
psykiatriska tillstånd är vanlig. Det finns ett stort behov av kunskap
om personlighetsstörningar, vilket gör att de kliniska riktlinjer
som nu presenteras är mycket angelägna och välkomna. Arbetsgruppen
med Lisa Ekselius i spetsen har på ett mycket förtjänstfullt sätt
åskådliggjort personlighetsstörningarnas kliniska uttryck, komplexitet
och drabbade personers subjektiva lidande. Ett av huvudsyftena
med de nu presenterade riktlinjerna är att göra personlighetsstörningarna
igenkännbara för oss alla som möter patienter med dessa tillstånd
i vår kliniska vardag. Genom att tidigt kunna identifiera personlighetsstörningar
hos patienter, kan man formulera realistiska behandlingsmål
och minska risken för att de hamnar i ofruktsamma
behandlingskontakter. Detta gäller inte minst många patienter som
behandlas för ett axel-I-syndrom. Idag finns en rad diagnostiska
5
hjälpmedel som kan underlätta identifiering av personlighetsstörningar.
Trots att det fortfarande råder brist på empirisk forskning inom
området finns det belägg för att dessa störningar går att behandla
framgångsrikt. Tydlig struktur samt värnande om den terapeutiska alliansen
mellan patient och behandlare är väsentliga för all form av behandling
av patienter med personlighetsstörningar.
Personlighetsstörningsproblematiken leder många gånger till funktionella
svårigheter i livet, känsla av utanförskap och subjektivt lidande.
Inte minst gäller det patienter med borderline personlighetsstörning,
där även risken för självskadebeteende och suicid är hög. Det är
hoppfullt att behandlingsmetoder som dialektisk beteendeterapi
(DBT) har visat sig vara effektiv för dessa patienter. Andra personlighetsstörningar,
främst antisocial personlighetsstörning, åsamkar
framför allt omgivningen lidande och problem. Ofta förvärras detta
av koppling till missbruk och leder inte sällan till våld och kriminalitet.
I dagens samhällsklimat är riskbedömning av upprepat våld en viktig
men grannlaga uppgift. Inom rättspsykiatrin, där många av dessa
patienter finns, används idag bedömningsinstrument som har visat sig
kunna bidra till säkrare bedömning av återfallsrisk. För patienter
utanför den rättspsykiatriska vården är riskbedömningsinstrumentet
osäkrare och det finns för närvarande inget som kan ersätta en samlad
klinisk bedömning. Det är dock viktigt att riskbedömningar görs
på ett så strukturerat sätt som möjligt av patienter med personlighetsstörning,
särskilt vid samtidig förekomst av missbruk.
Places social relations and activities in the everyday lives of folder adults with psychiatric disabilities: an interview study
Nordström, M., Dunér, E., Olin, A., & Wijk, H.
(2009)
BACKGROUND:
Knowledge about the daily life of older adults with psychiatric disabilities is extremely limited, especially from the standpoint of the individual. The overall aim of this study was to describe and analyze the ways in which older adults with a psychiatric disability experience places, social relations and activities in different arenas of their everyday lives.
METHOD:
Twelve older adults (>55 years) with a psychiatric disability were interviewed either once or twice, using different interview techniques. The first interviews were semi-structured and the second were in-depth interviews guided by a site-map. The interview texts were analyzed using qualitative content analysis, proceeding from open to focused coding in several steps.
RESULTS:
Although the respondents spent most of their time in their own homes, some also spent a lot of time at day-care centers and other similar places. The amount of time spent in places in the public arena varied a great deal. The interviewees' experiences of the places, relationships and activities in their everyday lives can be related to aspects of freedom and coercion, internal and external structure, and relationships and support.
CONCLUSION:
The provision of a varied range of services and support in diverse settings in order to make these accessible to persons of different ages and needs is an important challenge for welfare politics.
Positive parenting as a protective resource for parentally bereaved children
Haine, R.A., Wolchik, S.A., Sandler, I.N., Millsap, R.E. & Ayers, T.S.
(2006)
Positive parenting was examined as a protective resource against the adverse effects of negative life events on parentally bereaved children's mental health problems. The sample consisted of 313 recently bereaved children ages 8 to 16 and their current caregiver. Both the compensatory (direct effect independent of negative life events) and the stress-buffer (interactive effect with negative life events) protective resource models were examined and child gender was explored as a moderator of both models. Results revealed evidence for the compensatory protective resource model for both child and caregiver reports of mental health problems. No evidence of the stress-buffer model or child gender as a moderator was found. Implications for the understanding of children's responses to the death of a parent and the development and implementation of preventive interventions are discussed.
Prevalence and correlates of adult attentiondeficit hyperactivity disorder: meta-analysis
Simon, V., Czobor, P., Balint, S., Meszaros, A., & Bitter, I.
(2009)
BACKGROUND:
In spite of the growing literature about adult attention-deficit hyperactivity disorder (ADHD), relatively little is known about the prevalence and correlates of this disorder.
AIMS:
To estimate the prevalence of adult ADHD and to identify its demographic correlates using meta-regression analysis.
METHOD:
We used the MEDLINE, PsycLit and EMBASE databases as well as hand-searching to find relevant publications.
RESULTS:
The pooled prevalence of adult ADHD was 2.5% (95% CI 2.1-3.1). Gender and mean age, interacting with each other, were significantly related to prevalence of ADHD. Meta-regression analysis indicated that the proportion of participants with ADHD decreased with age when men and women were equally represented in the sample.
CONCLUSIONS:
Prevalence of ADHD in adults declines with age in the general population. We think, however, that the unclear validity of DSM-IV diagnostic criteria for this condition can lead to reduced prevalence rates by underestimation of the prevalence of adult ADHD.
Prevention and Intervention Strategies With Children of Alcoholics.
Emshoff JG, Price AW.
(1999)
Objective. This article was designed to give pediatricians a basic knowledge of the needs of children who live in families with alcoholism. It briefly presents issues involved in the identification and screening of such individuals and provides primary attention to a variety of preventive and treatment strategies that have been used with school children of alcoholics (COAs), along with evidence of their effectiveness.
Methodology. A literature search including both published and unpublished descriptions and evaluations of interventions with COAs.
Results. The scope and nature of the problems of growing up in an alcoholic home are presented. The risk and protective factors associated with this population have been used as a foundation for preventive and treatment interventions. The most common modality of prevention and intervention programs is the short-term small group format. Programs for COAs should include the basic components of information, problem- and emotion-focused coping skills, and social and emotional support. Physicians are in a unique position to identify and provide basic services and referrals for COAs. School settings are the most common intervention sites, but family and broad-based community programs also have shown promise in alcohol and other drug prevention.
Conclusions. Several COA interventions have demonstrated positive results with respect to a variety of measures including knowledge of program content, social support, coping skills, and emotional functioning. Rigorous studies are needed to understand better the complex ways children deal with parental alcoholism. A need remains for empirically sound evaluations and for the delineation of research findings.
Preventive interventions in families with parental depression: Children’s psychosocial symptoms and prosocial behaviour
Solantaus, T., Paavonen, E.J., Toikka, S., & Punamäki, R.L.
(2010)
The aim is to document the effectiveness of a preventive family intervention (Family Talk Intervention, FTI) and a brief psychoeducational discussion with parents (Let's Talk about the Children, LT) on children's psychosocial symptoms and prosocial behaviour in families with parental mood disorder, when the interventions are practiced in psychiatric services for adults in the finnish national health service. Patients with mood disorder were invited to participate with their families. Consenting families were randomized to the two intervention groups. The initial sample comprised 119 families and their children aged 8-16. Of these, 109 completed the interventions and the baseline evaluation. Mothers and fathers filled out questionnaires including standardized rating scales for children's symptoms and prosocial behaviour at baseline and at 4, 10 and 18 months post-intervention. The final sample consisted of parental reports on 149 children with 83 complete data sets. Both interventions were effective in decreasing children's emotional symptoms, anxiety, and marginally hyperactivity and in improving children's prosocial behaviour. The FTI was more effective than the LT on emotional symptoms particularly immediately after the intervention, while the effect of the LT emerged after a longer interval. The study supports the effectiveness of both interventions in families with depressed parents. The FTI is applicable in cultural settings other than the USA. Our findings provide support for including preventive child mental health measures as part of psychiatric services for mentally ill parents.
Projektrapport: Anhörig stöd vid Ersta sjukhus, Psykiatriska kliniken. Ht 2005 – Ht 2007
Ewertzon, M.
(2007)
Ersta diakoni, Ersta sjukhus, Psykiatriska kliniken fick i Juli 2005 i uppdrag från Beställarkontoret vård vid Stockholms läns landsting (SLL) att under perioden hösten 2005 till 2007 utveckla stödinsatser riktat till anhöriga till personer med långvarig psykisk sjukdom. Uppdraget var länsövergripande och stödinsatserna skulle utformas som ett komplement till det stöd som patientens vårdgivare erbjöd. Projektet har fortlöpande genomförts i nära samverkan med intresseföreningar och psykiatriska verksamheter i Stockholms län, i syfte att optimalt tillgodose behovet av kompletterande stödinsatser bland anhöriga/närstående i länet. Stödinsatser och aktiviteter som anordnades var telefonrådgivning, psykopedagogiska grupper och öppna föreläsningar. I de 16 psykopedagogiska grupper som träffades vid fyra till sex tillfäller/grupp har totalt 204 grupper deltagit. I de sex öppna föreläsningarna med teman rörande anhöriga/närstående till person med psykisk sjukdom hat totalt ca 550 personer deltagit. De psykopedagogiska grupperna utvärderades via en enkät i samband med att de avslutades. Ett år efter avslutad grupp har fyra uppföljande fokusgruppsintervjuer genomförts bland syskon till person med psykossjukdom. I enkätutvärderingen framkom att att deltagarna värderade innehållet i föreläsningarna generellt högt. En klar majoritet uppgav att de hade fått mer kunskap om sjukdomen och behandlingen. En klar majoritet (87%) uppgav att erfarenhetsutbytet vid gruppträffarna varit till hjälp. Totalt svarande 94% att gruppträffarna varit till hjälp för dem. Mer än halva gruppen (60%) upplevde sig mindre stressade, eller att de var mindre irriterade eller oroliga vid svårigheter som har med sjukdomen att göra efter det att de deltagit i gruppträffarna. Nästan samtliga (97%) uppgav att de skulle vilja rekommendera denna form av träffar till andra personer. En majoritet (79%) önskade någon form av fortsättning eller uppföljning av träffarna, många förslag lämnades på hur dessa kan utformas. I fokusgrupperna deltog 13 personer. Eftersom det var för få personer som deltog planeras eventuellt ytterligare uppföljningar. Resultatet är ännu inte analyserat då eventuellt ytterligare intervjuer kommer att genomföras. I en första omgång framkom att majoriteten av deltagarna beskrev att träffarna haft betydelse; kunskapsmässigt och/eller känslomässigt. Även här framkom önskemål om någon form av fortsättning/uppföljning av träffarna. Deltagare som deltog i psykopedagogiska grupper under 2006 besvarade frågan "på vilka sätt de ansåg att den psykiatriska vården på bäst sätt kan hjälpa/stödja dem som anhörig/närstående till person med psykisk sjukdom". I svaren framkom förslag om hjälp/stöd på fyra nivåer; generellt stöd på samhällsnivå, eget stöd från vården, möjlighet att delta i vård och behandling samt god vård och behandling av den sjuke. Projektgruppens, som medverkade i och ansvarade för stödinsatserna, erfarenheter är att denna stödform är viktig som ett komplement till det stöd som bedrivs vid andra verksamheter i länet.
Psychological characteristics of children of alcoholics
Sher, KJ.
(1997)
More than 20 years ago, researchers first noted that children of alcoholics (COA's) appeared to be affected by a variety of problems over the course of their life span. Such problems include fetal alcohol syndrome, which is first manifested in infancy; emotional problems and hyperactivity in childhood; emotional problems and conduct problems in adolescence; and the development of alcoholism in adulthood. Although much has been learned over the ensuing two decades, a number of controversial research areas remain. In particular, debate stems from the fact that despite a common interest in COA's, clinically focused literature and research-focused literature have resulted in two distinct bodies of knowledge. This article reviews important research results, with emphasis on findings generated by the alcohol-research community. Attention also is given to examining the empirical validity of concepts that have been advanced by several influential clinicians from the COA field.
Psychopatology in children of holocaust survivors: a review of the research literature
Kellerman, N. P. F.
(2001)
The literature on transgenerational transmission of Holocaust trauma has grown into a rich body of unique psychological knowledge with almost 400 publications. For the time being, however, the transgenerational effect of the Holocaust on the offspring remains a subject of considerable controversy. The main question involves the presence or absence of specific psychopathology in this population. Psychotherapists kept reporting various characteristic signs of distress while research failed to find significant differences between offspring and comparative groups. In an effort to settle this question, the present review of the research literature provides a summary of the findings of 35 comparative studies on the mental state of offspring of Holocaust survivors, published between 1973-1999. This extensive research indicates rather conclusively that the non-clinical population of children of Holocaust survivors does not show signs of more psychopathology than others do. Children of Holocaust survivors tend to function rather well in terms of manifest psychopathology and differences in the mental state of offspring and people in general are small according to most research. The clinical population of offspring, however, tend to present a specific "psychological profile" that includes a predisposition to PTSD, various difficulties in separation-individuation and a contradictory mix of resilience and vulnerability when coping with stress.
På väg mot hela vägen. En utvärdering av ”Hela vägens psykiatri” i Gävleborg
Finn, Bengt & Bromark, Kristina
(2011)
En rad tragiska händelser i början av 2000-talet som får stor massmedial uppmärksamhet är startpunkten för utredningen Nationell psykiatrisamordning. Utredningen syftade till att se över flera av de områden som berör social omsorg och rehabilitering av personer med psykisk sjukdom eller psykiska funktionsnedsättningar. Statliga stimulansmedel avsattes att användas till kompetenshöjande åtgärder för "baspersonal" inom landstingets psykiatri och kommunernas socialtjänst. 2008 ansökte sex kommuner i Hälsingland och landstinget i Gävleborg om dessa medel och projektet som startas får namnet "Hela vägens psykiatri i Gävleborg".
Det övergripande målet med projektet "Hela vägens psykiatri i Gävleborg" är att förstärka kompetensen bland personal som i sitt dagliga arbete kommer i kontakt med personer med psykisk sjukdom eller psykisk funktionsnedsättning. Kompetenssatsningen syftar till att öka den enskildes (brukarens/patientens) möjligheter till integration i samhället och att leva ett självständigt liv.
Reflektioner om dilemman i social barnvård
Anderson, G.
(2013)
Rehabilitering av människor med psykiska funktionshinder.
Anthony, William, Cohen, Mikael, Farkas, Marianne
(1996)
Relatives' experiences of the Boston Psychiatric Rehabilitation approach: a qualitative study.
Jormfeldt H, Svensson B, Hansson L, Svedberg P.
(2014)
The Boston Psychiatric Rehabilitation (BPR) approach is individualized and
characterized by being based entirely on the individual's unique needs and
preferences in the areas of working, learning, social contacts, and living
environment. Relatives of clients in mental health services influence the
client's possibilities for recovery by their everyday relationship. Relatives
have, however, traditionally had a subordinated role in the care of their
mentally ill family member. The perspective of relatives is an important aspect
in the development of new approaches to psychiatric rehabilitation. The purpose
of this study was thus to describe and explore relatives' experiences of the BPR
approach. Ten relatives of clients in mental health services taking part in the
BPR were interviewed. The interviews were transcribed and analyzed with a
qualitative content analysis method to explore relatives' experiences of the BPR
intervention in a county in Sweden. The findings from the interviews could be
summarized in the theme "To meet the clients' needs" consisting of three
categories: "Dependence on staffs' competence," "Responsibility for user
involvement," and "The necessity for coordination between authorities and
caregivers." The findings suggest that relatives may contribute with important
information about clients' needs related to outcome of care. Relatives'
perspectives may be of importance in future development of BPR. Further research
about the relatives' role in psychiatric rehabilitation is needed as well as
studies that compare different kinds of psychiatric rehabilitation from the
perspective of relatives.
Relatives of psychiatric inpatients – do physical violence and suicide attempts of patients influence family burden and participation in care?
Kjellin, Lars & Östman, Margareta
(2005)
A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.
Resilience Among Children Exposed to Domestic Violence: The Role of Risk and Protective Factors
Martinez-Torteya, C., Bogat, G. A., von Eye, A., & Levendosky, A. A.
(2009)
Individual and family characteristics that predict resilience among children exposed to domestic violence (DV) were examined. Mother-child dyads (n = 190) were assessed when the children were 2, 3, and 4 years of age. DV-exposed children were 3.7 times more likely than nonexposed children to develop internalizing or externalizing problems. However, 54% of DV-exposed children maintained positive adaptation and were characterized by easy temperament (odds ratio [OR] = .39, d = .52) and nondepressed mothers (OR = 1.14, d = .07), as compared to their nonresilient counterparts. Chronic DV was associated with maternal depression, difficult child temperament, and internalizing or externalizing symptoms. Results underscore heterogeneous outcomes among DV-exposed children and the influence of individual and family characteristics on children's adaptation.
Samordna rehabiliteringen – Stöd till utveckling av arbetsinriktad rehabilitering för personer med psykisk sjukdom eller funktionsnedsättning
Socialstyrelsen
(2011)
Scoping studies: towards a methodological framework
Arksey, H., & O'Malley, L.
(2005)
This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.
See-Hear-Do pictures. Teaching about children’s cancer with cartoon tools
Gustafsson, K. & Nolbris, M.
(2006)
Self-reported exposure to intimate partner violence among women and men in Sweden: results from a population-based survey
Nybergh, L., Taft, C., Enander, V., & Krantz, G.
(2013)
Background
Few population-based studies assessing IPV among randomly selected women and men have been conducted in Sweden. Hence, the aim of the current study was to explore self-reported exposure, associated factors, social and behavioural consequences of and reasons given for using psychological, physical and sexual intimate partner violence (IPV) among women and men residing in Sweden.
Methods
Cross-sectional postal survey of women and men aged 18–65 years. Bivariate and multivariate logistic regression analyses were used to identify factors associated with exposure to IPV.
Results
Past-year IPV exposure rates were similar in women and men; however, earlier-in-life estimates were higher in women. Poor to moderate social support, growing up with domestic violence and being single, widowed or divorced were associated with exposure to all forms of IPV in men and women. Women and men tended to report different social consequences of IPV.
Conclusions
Our finding that women reported greater exposure to IPV earlier-in-life but not during the past year suggests the importance of taking this time frame into account when assessing gender differences in IPV. In-depth, qualitative studies that consider masculinities, femininities power and gender orders would be beneficial for extending and deepening our understanding of the gendered matter of IPV.
Siblings of Children With Disabilities: Research Themes
Stoneman, Zolinda
(2005)
Until the early 1980s, most researchers paid little attention to sibling relationships. Studies of mothers dominated the research agenda, to the almost total exclusion of fathers, extended families, and siblings. Although in early classic studies of families of children with disabilities, investigators embraced a family systems approach that included siblings (i.e., Farber & Jenne, 1963), this emphasis did not take root until recently. There has been an impressive growth in the number of published studies focusing on siblings of children with disabilities. In this paper, my goal is to examine themes in this research and reflect on our state of knowledge.
The child´s worries about the mother´s breast cancer: Sources of distress in school-age children
Zahlis, E.H.
(2001)
Abstract
PURPOSE/OBJECTIVES:
To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer.
DESIGN:
Descriptive, qualitative study.
SETTING:
Private family homes.
SAMPLE:
Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer.
METHODS:
Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer.
MAIN RESEARCH VARIABLES:
Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses.
FINDINGS:
The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer.
CONCLUSIONS:
Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.
IMPLICATIONS FOR NURSING PRACTICE:
Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.
The Consequences of Attention-Deficit/Hyperactivity Disorder in Adults
Goodman, D. W.
(2007)
Until recently, attention-deficit/hyperactivity disorder (ADHD) was a diagnosis reserved for children and adolescents as it was believed to dissipate before adulthood. New evidence, however, supports the persistence of ADHD beyond adolescence, and it is now recognized as a chronic neurobehavioral disorder in adults. Adults with ADHD have difficulties with school, work, family interactions, and social activities. Although treatments are available for adult ADHD, many patients never receive an accurate diagnosis that would afford them appropriate therapeutic intervention. If left untreated, adult ADHD can cause significant personal, social, and economic burdens that can have a negative impact on overall quality of life. This article discusses how ADHD presents in adults and the effects of the disorder on educational, occupational, interpersonal, and social functioning. Currently available treatments for ADHD in adults are also reviewed.
The coping experiences of carer´s who live with someone who has schizophrenia.
Huang X, Sun F, Yen W, Fu C.
(2008)
AIMS AND OBJECTIVES:
The purpose of this study was to understand the coping experiences of carers living with a schizophrenic family member. Our research may be a valuable reference for mental health professionals seeking to improve the quality of care for people with schizophrenia and their carers.
DESIGN:
We employed a qualitative descriptive phenomenological research methodology to understand the coping experiences of carers living with a schizophrenic family member.
METHODS:
Purposive sampling and in-depth, face-to-face interviews were used to collect data. When data saturation was reached, the sample size comprised 10 carers (five men and five women). The interview focused on the carer's coping experience. During the process of data collection and data analyis we established epoches (bracketing) and returned to the reality of the carers' experience to keep the data objective. Narratives were analysed according to Colaizzi's seven steps method.
RESULTS:
The two most commonly used coping mechanisms that emerged from this study were psychological coping strategies (cognitive, behavioural and emotional) and social coping strategies (religious, social and professional support). Furthermore, three factors were found in the study, including low social status, traditional help-seeking behaviours and feelings of shame.
CONCLUSION:
Findings from this study demonstrate the importance of understanding the coping experiences of carers who have a family member with schizophrenia. Further research is needed to identify more important detailed factors that affect the coping strategies of carers. Relevance to clinical practice. Community mental health care professionals need to improve the quality of care for helping carers living with a family member who has schizophrenia. It is important to develop effective coping intervention strategies that help carers cope with the stress and strain of caring for a family member with schizophrenia.
The definition of disability: what is in a name
Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S.
(2006)
The definition of the word disability has been debated for the UN Convention on the Rights of Persons with Disabilities, and the final draft will soon be submitted to the UN General Assembly for approval.1 WHO has been mandated to produce a world report on disability and rehabilitation by 2009 to collate the best evidence about the prevalence, distribution, and trends of disability and recommend action.2
The earnings of informal carers: Wage differentials and opportunity costs
Heitmueller A, Inglis K.
(2007)
Abstract: A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial.
The economic consequences of autistic spectrum disorder among children in a Swedish municipality
Järbrink, Krister
(2007)
In this study, the societal economic consequences of autistic spectrum disorder were investigated using a sample of parents of children identified with the disorder and living in a Swedish municipality. Cost information was collected using a postal questionnaire that was developed through experiences gained from an earlier study. Using conservative assumptions, the additional societal cost due to the disorder was estimated to be approximately 50,000 annually per child. Parents of children with the disorder spent an average of about 1000 hours per year additionally caring for and supporting their child. The study indicates that the major cost drivers for autistic spectrum disorder among children can be found within the community for support and schooling, while the major impact on relatives is on time spent and thereby quality of life rather than a financial burden.
The effect of color on the recognition and use of line drawings by children with severe intellectual disabilities
Stephenson, J.
(2007)
Line drawings are commonly used as communication symbols for individuals with severe intellectual disabilities. This study investigated the effect of color on the recognition and use of line drawings by young children with severe intellectual disabilities and poor verbal comprehension who were beginning picture users. Drawings where the color of the picture matched the object and where the color of the drawing did not match the object were used, as well as black and white line drawings. Tentative findings suggest that some students with intellectual disabilities may find it more difficult to recognize and line drawings where the color does not match the object compared to line drawings where the color of the drawing does match the color of the object.
The effectiveness of bereavement interventions with children: a meta-analytic review of controlled outcome research
Currier, J.M., Holland, J.M., & Neimeyer, R.A.
(2007)
Abstract
Grief therapies with children are becoming increasingly popular in the mental health community. Nonetheless, questions persist about how well these treatments actually help with children's adjustment to the death of a loved one. This study used meta-analytic techniques to evaluate the general effectiveness of bereavement interventions with children. A thorough quantitative review of the existing controlled outcome literature (n = 13) yielded a conclusion akin to earlier reviews of grief therapy with adults, namely that the child grief interventions do not appear to generate the positive outcomes of other professional psychotherapeutic interventions. However, studies that intervened in a time-sensitive manner and those that implemented specific selection criteria produced better outcomes than investigations that did not attend to these factors.
The effectiveness of Talking Mats® with people with intellectual disability
Murphy, J., & Cameron, L.
(2008)
People with intellectual disability have significant difficulties in ensuring their voice is heard. Talking Mats is a low tech communication resource which helps understanding and supports expression. This study examined the effectiveness of the resource for people with intellectual disability. A mixed method quantitative and qualitative study involving 48 people at four levels of comprehension was designed to compare the effectiveness of Talking Mats with the individual's main communication method. Thirty of the 48 participants were identified as using Talking Mats effectively. Effective use of Talking Mats was associated with functional comprehension. The study found that scores on all indicators of communication effectiveness were higher when using Talking Mats compared to main communication methods. This study identified that Talking Mats can be an effective communication resource for many people with intellectual difficulty and can help them express their views by increasing both the quantity and quality of information communicated.
The effects of child maltreatment and polymorphisms of the serotonin transporter and dopamine D4 receptor genes on infant attachment and intervention efficacy
CICCHETTI, D., ROGOSCH, F. A. & TOTH, S. L.
(2011)
This investigation examined the extent to which polymorphisms of the serotonin transporter linked promoter region (5-HTTLPR) and the dopamine receptor D4 (DRD4) genes differentially influenced the development of attachment security and disorganization in maltreated and nonmaltreated infants at age 13 months, and the extent to which the efficacy of preventive interventions to promote attachment security were influenced by genetic variation. The sample consisted of 106 infants from maltreating families, participating in a randomized control trial evaluating the efficacy of two interventions, child-parent psychotherapy and psychoeducational parenting intervention, and 47 infants from nonmaltreating families. DNA samples were genotyped for polymorphisms of 5-HTTLPR, DRD4 exon III variable number tandem repeat, and DRD4-521. Attachment organization at age 1 and at age 2 was assessed with the Strange Situation for all participants, prior to and following the completion of the interventions. High rates of disorganized attachment were observed in the maltreatment compared to the nonmaltreatment group, and both interventions resulted in increased rates of attachment security at age 2. Genetic variation did not influence improvement in attachment organization among maltreated infants. Among maltreated infants, genetic variation had minimal effect on attachment organization. In contrast, among nonmaltreated infants, 5-HTTLPR and DRD4 polymorphisms influenced attachment security and disorganization at age 2 and the stability of attachment disorganization over time.
The Efficacy of Cognitive Behavioral Therapy for Adults With ADHD: A Systematic Review and Meta-Analysis of Randomized Controlled Trials
Young, Z., Moghaddam, N., & Tickle, A.
(2016)
OBJECTIVE:
To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms.
METHOD:
A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted.
RESULTS:
Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004).
CONCLUSION:
These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.
The iconicity of picture communication symbols for children with English additional language and mild intellectual disability
Dada, S., Huguet, A., & Bornman, J.
(2013)
The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.
Young carers and their Families
Becker, S., Aldridge, J., & Dearden, C.
(1998)
TONY WATERSTON, Consultant Paediatrician (Community Child Health)
Young Carers and their Families. By Becker S, Aldridge J, Dearden C. (Pp 144; paperback £14.99.) Blackwell Science, 1998. ISBN 0 632 04966 9 .
A day in the life of a child caring for a parent with multiple sclerosis.
Children caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.
Written by a trio of sociologists the book comes from a community and family based perspective but there is much of value to paediatricians. The authors first describe three perspectives on child carers: the impact of disability on the family, which is mainly medical; the children's rights angle; and the view of the disability rights movement. The first is viewed rather negatively as being narrow, but to me portrays the emotional and educational impact on the child of being a carer: "Every child needs to grow up in a stable environment characterised by consistent relationships. Many children are instead subjected to unending crises stemming from a parent's illness and repeated hospitalisation which provoke chronic uncertainty and unresolved grief that can be more stressful to a child than the loss of a parent through divorce or death." Thus the role of carer can restrict the child's education, can create physical burdens that their bodies are unprepared for, and confront them with a picture of suffering that has long term harm.
The children as carers literature tells why children take on care giving roles: a major factor is lone parenthood, another is reluctance of their father to take on caring activity; sadly the failure of services to recognise the needs of children and indeed sometimes to withdraw their provision is a notable factor. Inevitably, poverty is an ever present contributor. We learn of the involvement of young carers in intimate tasks; one girl cared for her father from the age of 9 following a stroke: "I did stop showering him at about 14 or 15, but recently that's started again. I didn't like showering him any more. You know, I thought 'I want my privacy, I'm sure he wants his', and I'm sure he doesn't like me having to shower him and I certainly don't like doing it. I suppose it was embarrassment. You know—it takes up so much time, it takes about an hour from start to finish, you know, get him in the shower and get him out and dressed."
Children carers have little power or status and families assume that what has begun voluntarily will become embedded in their habits, even though the young person would rather relinquish the role.
School attendance and performance is poor among young care givers; one study found that one in four were missing school. It is a poor reflection on school health services that support has not been provided to help these children back into school.
I found that the authors take a long time to make a few simple points. Having learned that caring is common and not beneficial for children, I wanted to know what I should do but there are no clear messages. The UN Convention on the Rights of the Child should underpin policy, but its impact in the UK has been limited. Only 11 of 71 local authorities defined these children as in need under the Children's Act. The Carers Act 1996 ensures that children may request to have their needs assessed but in a typical British Catch 22, the Act does not oblige departments to provide any services.
A useful type of support are the Young Carers' Projects with now over 100 in the UK. These raise awareness, develop supportive services, act on behalf of young carers to ensure that they receive appropriate benefits, and arrange leisure activities.
The authors identify the need to inform young carers on medical conditions, pointing out that this is woefully inadequate and that many children know so little about their parents' medical condition that they had invented their own version of diagnosis, prognosis, and consequences.
It saddened me that in the section on the role of professionals in identifying and assisting young carers, there is no mention of paediatricians. Is this because they are seen as purely medical, or because they have little contact with young carers? I suspect that it is the former, and that we need to be more outspoken about our wish to work across disciplines on behalf of children's health. We also need to look out for child carers in the families whom we see.
What I searched for was a child or young person's perspective, to try and understand some of the positive aspects of caring. I found little, perhaps because little has been done. Usually children have pretty good answers to difficult questions. Searching hard, I found a reference to a national survey of young people in which they thought that children of 10 should make their own bed and help with the washing up, children of 14 could take a part time job, young people at 16 could baby sit a child of 5, and 18 year olds could marry and vote. Caring for a parent was not mentioned.
So what might paediatricians take away from this book? First, an understanding that children who are carers are around and are being harmed; second, that they are often invisible to the agencies who should be helping; and third, that we have a role in highlighting this type of exploitation, as well as looking out for young carers among our patients. We would do well to network with the agencies locally who have young carers' projects. Only when I was writing this did I discover who they are in my district.
Young people and drugs among 15-24 year-olds: Analytical report
Flash Eurobarometer
(2008)
"A look at a community coming together to meet the needs of older adults: An evaluation of Neighbors Helping Neighbors program."
Trickey, R
(2008)
The purpose of this study was to evaluate the effectiveness of the Neighbors Helping Neighbors program. The study included surveys of 49 community-residing older adults and 26 community volunteers. Results showed that older adults perceived their quality of life to have improved after receiving social and environmental services; volunteers felt that their contributions to the program had made a significant difference in their community. This exploratory, descriptive study is only a beginning effort, but it holds great promise for suggesting ways to address the needs of the burgeoning aging population in our society.
"Anhörig 300" : Utvärdering av närståendestöd i kronobergs län 1999-2001 : "Jag vågar inte planera mer än en kvart i taget"
Albin, B., & Siwertsson, C.
(2002)
"Being in good hands": next of kin's perceptions of continuity of care in patients with heart failure
Östman, Malin, Bäck-Pettersson, Siv, Sandvik, Ann-Helén, Sundler, Annelie Johansson
(2019)
Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin ( n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of "being in good hands" sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.
"Depression Among Recipients of Informal Care: The Effects of Reciprocity, Respect, and Adequacy of Support."
Wolff, J. F. and Agree, E.M.
(2004)
Abstract
OBJECTIVES:
The objective of this work was to examine the relationship of perceived quality of care to depression among recipients of informal long-term care.
METHODS:
eneralized estimating equations were used to generate population-average logistic regression models of prevalent depression, using a sample of 420 disabled community-dwelling women aged 65 or older receiving informal care obtained from the Women's Health and Aging Study Caregiving Survey.
RESULTS:
Findings confirm a substantial prevalence of depression among older women with disabilities and support the hypothesis that perceived reciprocity and respect afforded by one's primary caregiver as well as adequacy of instrumental support all were associated with a lower likelihood of being categorized as depressed, even after controlling for sociodemographic, health, and psychosocial characteristics that are known to be related to depression.
DISCUSSION:
Perceived quality of informal care arrangements has a bearing on the psychological health of care recipients. Individuals in more reciprocal relationships and in relationships where they felt respected and valued were less likely to be depressed than their counterparts.
"Det är vi och vi är tillsammans" : Sju manliga anhörigvårdare berättar.
Strandberg, A.
(2003)
"Easing the way" for spouse caregivers of individuals with dementia: a pilot feasibility study of a grief intervention
Ott, C. H., Kelber, S. T., & Blaylock, M.
(2010)
A multicomponent intervention targeting grief symptoms in spouse caregivers of individuals with dementia was pilot tested in this feasibility study. Twenty spouse caregivers completed the study within the 5-month protocol. The five-component intervention, deduced from Meuser, Marwit, and Sanders' Dementia Caregiver Grief Model and tailored to participants' grief, mental health, and learning needs, included supportive grief counseling, emotional support, education, skill building, and referral to community resources. Significant changes were found from baseline to intervention completion for the measures of grief, depression, anxiety, positive states of mind, and self-efficacy, resulting in a moderate effect size of -0.43 for grief to a large effect size of -2.40 for anxiety. Increases in quality of life and decreases in grief persisted at the 8-month follow up for caregivers who continued to provide care in the home. The Easing the Way intervention protocol is a promising caregiver program that warrants further testing in a randomized controlled study.
"Ensamhet i tvåsamheten" : Anhörigas erfarenheter av att vårda personer med demenssjukdom i hemmet (Meddelande från Blekinge FoU-enhet, 2005:1).
Larsson, L.
(2005)
"Hvorfor er moderne aeldrepolitik slet ikke moderne?"
Buch, J.
(1980)
"Jag tar en dag i sänder - om ålderspensionerade anhörigvårdare".
Mossberg Sand, A-B.
(1996)
"Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative
Ducharme FC, Levesque LL, Lachance LM, Kergoat M-J, Legault AJ, Beaudet LM, et al.
(2011)
Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. Results: The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. Implications: This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet. Adapted from the source document.
"Left alone with straining but inescapable responsibilities": Relatives’ experiences with mental health services
Weimand BM, Hedelin B, Hall-Lord M-L, Sällström C.
(2011)
Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.
"My Friends are my Family‘: an argument about the limitations of contemporary law's recognition of relationships in later life."
Westwood, S.
(2013)
Current UK law and social policy privilege the conjugal couple, biological and filial relationships. Friendship remains on the margins of regulatory recognition. Yet friendship is of growing significance in contemporary social relationships. This is particularly so for older people, especially for older lesbian, gay and bisexual people. This paper explores the place of friendship in key areas of law and social policy relating to older age: pensions, benefits and inheritance; medical decision making; mental health and mental capacity legislation; and social care policy. The extent to which contemporary law is keeping up with changing relationship forms will be considered, together with its implications for equality in later life
"Non-palliative care" - a qualitative study of older cancer patients' and their family members' experiences with the health care system.
Fjose M., Eilertsen G., Kirkevold M., Grov EK.
(2018)
BACKGROUND: Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
METHODS: We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
RESULTS: The main theme is "Non-palliative care" - health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
CONCLUSION: The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.
"Om åtminstone blöjleveranserna kunde komma i tid!". Vårda och vårdas. Äldre och deras anhöriga, två undersökningar år 2000, utförd på uppdrag av Socialstyrelsen
Sundström, G.
(2001)
Den riksrepresentativa undersökning av hemmaboende äldre 75+ som gjordes våren 2000(Socialstyrelsen 2000a) är utgångspunkten för föreliggande två studier av äldre som själva är anhörigvårdare respektive av äldre som får anhörigvård.Av äldre som själva är anhörigvårdare har i föreliggande undersökning enbart personer som vårdar någon i det egna hemmet valt att medverka; nästan alla är make/maka till den vårdade. Detta innebär en något beskuren bild av äldre som omsorgsgivare, men troligen en adekvat belysning av äldre som vårdar sin partner. Bland äldre som fick mycket hjälp-omsorg-vård intervjuades anhöriga, av dessa var drygt hälften en maka-make. Totalt omfattar intervjuerna 56 personer (20 respektive 36 i dessa två grupper). I båda kategorierna är likheterna mer slående än skillnaderna.De flesta anhörigvårdare är själva äldre. Inte så få är män, särskilt inom äktenskapets ram. När makar står för omsorgen har vården ofta pågått länge och för en del har den medfört nedsatt hälsa.Vårduppgifterna är ibland fysiskt och/eller psykiskt betungande och medför ofta inskränkningar i den anhöriges sociala liv. Få av dem har arbete och än färre har tagit ledigt för att vårda. De vårdade har vanligen mycket nedsatt funktionsförmåga och är helt beroende av vårdaren, något som är tydligt belastande. Ganska många är drabbade av demenssymptom eller andra kognitiva nedsättningar.Det mest påtagliga är att så få använder offentlig hjälp. De som har sådan, har ofta mycket få insatser. De använder ett fåtal hemhjälpstimmar eller enbart annan hemtjänst såsom larm, matlåda och/eller färdtjänst. Många har dock fått sina bostäder anpassade och några får omfattande offentlig hjälp och är uttalat nöjd med den, men många av dem som inte har offentlig hjälp är också nöjda. Minst en tredjedel av anhörigvårdarna har uttalade önskemål om offentligt stöd.Manliga anhörigvårdare använder sig oftare av offentlig hjälp (hemhjälp m.m.) än kvinnliga anhöriga. Många av vårdarna får också hjälp av andra anhöriga, när sådana finns att tillgå. Påfallande många står dock utan stöd från andra anhöriga, bland de yngre är många enda barnet eller det enda tillgängliga barnet. Totalt sett bor nästan alla vårdare tillsammans med eller mycket nära den de hjälper. De vårdade oftast färre anhöriga (partner, barn, syskon, annan släkt) än den äldre befolkningen i allmänhet.Mycket få vårdare efterlyser spontant något offentligt stöd. Endast hälften efterfrågar hjälp när de får ta ställning till konkreta listor över tänkbara stödformer. De som önskar hjälp vill endera ha "avlastning" och/eller rehabilitering respektive (mer) hjälp med hushållet. Endast en sjättedel avvisar offentligt stöd i alla former. När anhöriga formulerar önskemål är de ofta mycket blygsamma: "om åtminstone blöjleveranserna kom i tid!". De offentliga insatserna framstår ibland som fantasilösa, otydliga och inflexibla. Studien fann också flera exempel på anmärkningsvärda missförstånd. Uppenbart är att många av dessa anhörigvårdare har (fått) föga information om stödmöjligheter m.m.Anmärkningsvärt många anhöriga (ca. hälften) önskar ekonomisk ersättning för sina insatser, några har redan små belopp för det de uträttar. När anhörigvårdare begärt ersättning har det för flera avslagits utan motivering eller på tveksamma grunder.Trots allt är närmare hälften i stort sett nöjda med sin situation och med den offentliga hjälp de får. Undersökningen finner åtskilliga exempel på illa fungerande offentlig hjälp, men också flera goda exempel på välfungerande insatser med mycket nöjda vårdtagare och anhöriga. Knappt hälften av vårdarna är intresserade av kontakt med frivilligverksamhet, något som ett fåtal redan har. Dessa är i allmänhet tydligt nöjda med detta stöd.
"Out of control" : Violence against personal support workers in long-term care.
Banerjee, A., Daly, T., Armstrong, H., Lafrance, S., & Szebehely, M.
(2008)
"Parent Management Training as a Treatment for Children with Oppositional Defiant Disorder Referred to a Mental Health Clinic."
Costin J
(2007)
Parent Management Training (PMT) has been shown to be an empirically supported intervention in ameliorating antisocial behaviour problems. Less evidence is available to demonstrate the effectiveness of PMT in routine public-health-oriented community-based settings where the presence of comorbid disorders complicates the picture. The current study was undertaken to investigate the effectiveness of PMT as a treatment for primary school-age children with Oppositional Defiant Disorder (ODD) and comorbid disorders offered by clinical staff as part of clinical practice. An Australian sample of 94 parents of children diagnosed with ODD by structured interview was provided with eight sessions of PMT. Measures used to assess changes in child behaviour symptoms were the Eyberg Child Behavior Inventory, the Parent Stress Index Child Domain, and the Child Behavior Checklist. Clinically relevant and statistically significant outcome results were found at posttreatment and at 5 months follow-up. There was a reduction in child symptomatology but no evidence of any effect of comorbidity on outcome. These findings are important for the clinical field as they show that PMT is a robust intervention suitable for routine clinical practice even when comorbid disorders are present in addition to ODD.
"The hidden client"--women caring for husbands with COPD: Their experience of quality of life.
Bergs, D.
(2002)
"Vad ska jag göra med min mamma"?
Holmberg, S.
(2008)
"We not them and us?” Views on the relationships and interactions between staff and relatives of older people permanently living in nursing homes
Hertzberg, A. and S. Ekman
(2000)
"You don't want to burden them": older adults' views on family involvement in care
Cahill, E., Lewis, L. M., Barg, F. K., & Bogner, H. R.
(2009)
Burden emerged as an important concept among older adults in a study of how older adults interact with their families around care. The authors conducted 50 semistructured interviews with adults older than the age of 65 years and a spouse or adult child. The sample was stratified by ethnicity thus giving the opportunity to explore both ethnic similarities and differences. Older adults who expressed the concept of burden were more likely to be White compared with older adults who did not express burden. Older respondents discussed burden in relation to not wanting to complicate the busy lives of adult children, guilt about health problems, and concern that children were overly worried about the care of their older family member. The expression and meaning of burden differed according to ethnicity. This study has implications for practice and policies to meet the needs of families and promote the independence of older persons.
‘Norms and ideals about elder care in a European comparative perspective’.
Daatland SO, Herlofsen K.
(2003)
“Generalised anxiety disorder in elderly patients: epidemiology, diagnosis and treatment options”
Flint, A. J.
(2005)
Generalised anxiety disorder (GAD) is characterised by at least 6 months of excessive uncontrollable worry accompanied by symptoms of motor tension and vigilance and scanning. As with other anxiety disorders, GAD is less prevalent in older adults than younger adults. GAD has a high level of comorbidity with other psychiatric disorders and this has a bearing on estimates of its prevalence. GAD that is comorbid with another psychiatric disorder has a period prevalence of approximately 4% in community-dwelling older people. On the other hand, 'pure' GAD is less common, with a period prevalence of approximately 1%. Pure GAD in late life is a fairly even mix of chronic cases that began earlier in life and cases starting for the first time in later life. The most frequent and consistent finding regarding late-life generalised anxiety is its high level of comorbidity with major depression. There are few longitudinal data pertaining to the temporal association of generalised anxiety and major depression in late life, but the data that do exist suggest that the anxiety is frequently symptomatic of the depression. If generalised anxiety occurs exclusively during episodes of major depression, a separate diagnosis of GAD is not warranted. Cognitive behaviour therapy (CBT) is the most frequently studied psychological treatment for GAD. Although CBT is more effective than a wait-list control condition, it is not more effective than nondirective therapies in late-life GAD. Furthermore, a standard course of CBT appears to be less efficacious for GAD in older adults than younger adults. Further research is needed to develop more efficacious and specific forms of psychotherapy for late-life GAD. The three classes of medications that are most commonly used for GAD are: (i) antidepressants; (ii) benzodiazepines; and (iii) buspirone. Antidepressant medication is the pharmacological treatment of choice for most older adults with generalised anxiety. When generalised anxiety is secondary to an episode of major depression, the selection of an antidepressant is guided by the same principles that apply to treatment of nonanxious depression. Antidepressant medication is also effective for GAD in the absence of an episode of major depression. In this situation, citalopram and venlafaxine have been found to be efficacious in older people. Data from studies of mixed-aged patients suggest that escitalopram, paroxetine and trazodone may also be beneficial in late-life GAD. Despite their widespread use in older persons with anxiety, benzodiazepines have a limited role in the treatment of GAD in the elderly. If a benzodiazepine is initiated, pharmacokinetic considerations favour the use of either lorazepam or oxazepam. Buspirone also has a more limited role than antidepressants in the treatment of late-life GAD.
“It makes me feel like good inside because I helped him do stuff” – Perceptions of psychological well-being in adolescents providing dementia care
Perion, Jennifer Steiner, Victoria Ames, April
(2021)
According to a 2018 report by the Alzheimer's Association, an estimated 250,000 children help support a family member with dementia, but few studies exist that describe their experience as family carers. This qualitative descriptive study sought to understand the perceived psychological well-being of adolescents who assist with providing care to family members with dementia. Eleven adolescents ages 12 to 17 caring for older non-parental family members with dementia in northwest Ohio participated in one of three focus group discussions. An adult family member was surveyed about family background and level of assistance provided. The data from the two questionnaires were analyzed using descriptive statistics. Focus group transcripts were analyzed using thematic content analysis. Thematic analysis revealed six themes related to psychological well-being: 1) Feeling compassion for the family member; 2) Finding connection through fun, humor, and mutual affection; 3) Helping even though it is not always pleasant; 4) Feeling good inside about helping family "do stuff"; 5) Believing no one can do it like family; and 6) Reflecting that it is just something that they do. The findings of this study provide new insight into adolescents' experiences of dementia family care and how it affects their psychological well-being. An examination of the themes suggests that secondary caring roles were mostly positive in nature and may help adolescents forge closer family relationships, find opportunities for personal growth and development, and overcome challenges to grow more confident. These findings may also suggest ways to include adolescents in family care as a means of positive growth opportunities. •Dementia caregiving was mostly a positive experience for adolescents.•Family obligations elicited feelings of connectedness.•Adolescents found ways to overcome feelings of aversion when providing care.•Emergent themes were consistent with Ryff's dimensions of physiological well-bring.•Results may be used to develop supportive and enriching programs for families.
“Role of depressive symptoms and comorbid chronic disease on health-related quality of life among community-dwelling older adults”.
Gallegos-Carrillo, K., Garcia-Pena, C., Mudgal, J., Romero, X., Durán-Arenas, L., & Salmeròn, J.
(2009)
OBJECTIVE:
This study examined the influence of depressive symptoms on health-related quality of life (HRQOL) among community-dwelling older adults suffering from various categories of chronic comorbidity.
METHODS:
A population-based survey in adults aged 60 years or more was conducted within a random sample of 1085 beneficiaries of the Mexican Institute of Social Security in Mexico City. Depressive symptoms were evaluated with the 15-item Geriatric Depression Scale, and chronic comorbidity was determined with self-reports concerning prior medical diagnoses and the HRQOL Short Form-36 health survey. We carried out a stratified analysis by comorbidity category, evaluating the impact of depressive symptoms on HRQOL through an analysis of variance and modeling the independent association of depression symptoms with HRQOL using multiple linear regression analyses adjusted for comorbidity and other covariables.
RESULTS:
HRQOL scores were low in the presence of depressive symptoms, while their impact increased when chronic diseases were also present. The group with the poorest HRQOL was older adults suffering from both depressive symptoms and two or more chronic diseases (P<.05). The stratified analysis by comorbidity and multivariate analysis, adjusted for covariables, indicated that depressive symptoms and comorbidity had cumulative negative effects on HRQOL.
CONCLUSION:
The HRQOL of older adults deteriorated when depressive symptoms were present and decreased even further with the simultaneous occurrence of chronic illnesses. Identifying depression symptoms-either alone or along with chronic conditions-is crucial for implementation of measures aimed at improving elderly people's HRQOL.
“Speech After Long Silence”: The Use of Narrative Therapy in a Preventive Intervention for Children of Parents with Affective Disorder
Focht-Birkerts, L., & Beardslee, W.R.
(1996)
This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural "canons" regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, "schematic base" of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.
”Alla behöver ju bra habilitering …” småbarnsföräldrars uppfattningar av stöd från habiliteringen
Carlhed, Carina
(1998)
Denna studie ingår som en del i ett större forskningsprojekt som bedrivs vid institutionen för Samhälls- och Beteendevetenskap vid Mälardalens högskola. Projektet syftar till att öka kunskapen om familjers samarbete med habiliteringsverksamhet. Projektledare är docent Eva Björck-Åkesson. I denna studie har fokus riktats mot föräldrar till barn med funktionshinder. Syftet har varit att belysa uppfattningarna ur deras eget perspektiv, men ambitionen har också omfattat ett vidare perspektiv, att beskriva föräld-rarnas önskemål om hur de vill bli bemötta och hur de vill att stödet ska utformas. Syftet kan kortfattat beskrivas i följande fråga: Hur uppfattar föräldrar som har små barn med funktionshinder det stöd de får från habiliteringen och hur vill de att stödet ska utformas i framtiden?Studien har en explorativ, hermeneutisk ansats och har sin utgångspunkt i ett föräldraperspektiv. De teoretiska utgångspunkterna är utifrån ett utvecklingsekologiskt synsätt och i empowermentteori. Resultaten har speglats mot tidigare studier inom området avseende familje-/närmiljöorienterat arbetssätt inom habilitering/intervention och inom området "Early Intervention". Vid genomförandet av studien prövades också möjligheten att kombinera en hermeneutisk ansats med fenomenografisk metod. Denna kombination har visat sig ge en användbar praktisk vägledning i tolknings- och analysarbetet.Studiens resultat visar att det finns en skillnad i hur föräldrarna uppfattar det stöd de får i dag och hur de önskar att stödet skulle ges. Uppfattningar av stöd från habiliteringen beskrivs i kategorier som omfattar organisatoriska faktorer, habiliteringsteamets arbetssätt och möten med enskilda professionella. Resultatet redovisas bl.a. i en tabell som beskriver en önskad och uppfattad situation, även föräldrarnas uppfattningar avseende andra formella/informella system beskrivs. Resultaten visar att intentionerna i bl.a. LSS (Lagen om särskilt stöd och service, SFS 1993:387) inte implementerats, brister i information och samordning av insatser tycks vara två av de bidragande orsakerna. Det finns således en skillnad i lagtext och verklighet. Rättigheter skall följas åt av resurser, vilket inte är fallet för de medverkande föräldrarna. Arbetssättet hos habiliteringen är inte familje/närmiljöorienterat och följaktligen riktas insatser mot barnet i första hand. Insatserna har inte baserats på behov i familjernas vardag i någon större utsträckning, utan föräldrarna har snarare blivit hänvisade till "det som finns", både när det gäller tillgänglig specialistkompetens och ett fast utbud av aktiviteter. Någon större grad av "em-powerment" har inte dessa föräldrar fått vara med om och de ser sig inte själva som samarbetspartners i habiliteringsprocessen.I mötet ställs speciella krav enligt föräldrarna, man behöver t.ex. tätare kontakter och en mer aktiv hjälp och önskar mötas av en större lyhördhet och flexibilitet. Brister i kommunikation hos både föräldrar och personal samt ett lågt visat intresse och initiativtagande hos personalen verkat ha varit ett hinder för detta. Resultaten pekar på ett behov av utbildning / fortbildning för både personal och föräldrar i gemensam problem-lösning. Det finns viktiga faktorer hos både personal och föräldrar som bidrar till ett gott samarbete, t.ex. en vilja att arbeta familjeorienterat, attityder, kommunikationsförmåga etc. Betydelsen av goda relationer, ett respektfullt bemötande och noggrann uppföljning är också viktigt för samarbetet. Habiliteringens mål bör vara klart formulerat och filosofin/värderingarna i verksamheten bör överensstämma med verkligheten. Det finns enligt dessa resultat en diskrepans mellan upplevt behov och tillgänglig service.Slutligen presenteras en modell som beskriver graden av empowerment som ett resultat av en ömsesidig påverkansprocess i mötet mellan föräldrar och habiliteringspersonal
”Are there any clinical characteristics of depression in elderly people that could be useful for case finding in general practice?”
Fröjdh, K., Håkansson, A., & Jansson, S.
(2003)
OBJECTIVES:
The aim of this study was to identify clinical characteristics of depression in elderly people that could be useful for case finding in general practice.
DESIGN:
A cross-sectional study of clinical characteristics through review of medical records.
SETTING:
Herrhagen health centre, Karlstad, Sweden.
SUBJECTS:
Seventy-one persons with a high depressive score in a screening of depressive symptoms and an age-matched and sex-matched control group of 138 persons with a low depressive score.
RESULTS:
The high depressive score group had an increased relative risk for "mental health problems" (RR 3.4; CI 95% 1.7-7.2), "many contacts with the health care centre" (> or = 14/3 years) (RR 2.9; CI 95% 1.4-6.1), and prescriptions of benzodiazepines (RR 1.7; CI 95% 1.0-2.9). Two-thirds of those in the high depressive score group had at least one of these characteristics. However, three-quarters of those with any of these characteristics had a low depressive score. In our population of elderly people with an estimated prevalence of 10.2% the positive predictive value would be 21% and the negative predictive value 95%.
CONCLUSION:
General practitioners should suspect a possible depressive disorder in elderly patients with mental health problems, with frequent contacts with the health centre or with prescriptions of benzodiazepines. Despite the high occurrences of these prominent clinical characteristics in the high-score group, they did not unfortunately have sufficient discriminatory power to be useful for case finding.
”Att hon säger att hjälp inte behövs, betyder inte att hjälp inte behövs”. Behov och resurser för yngre personer med demenssjukdom.
Sonde, Lars.
(2014)
Stiftelsen Stockholms läns Äldrecentrum har undersökt situationen för yngre personer med demenssjukdom (yngre än 65 år) och deras anhöriga. Fokus har lagts på att beskriva de specifika problem och behov som finns och en kartläggning har gjorts av vilka befintliga resurser som erbjuds för att möta upp behoven.
”Because we know our limits”: Elderly parents´ view on intergenerational proximity and intimacy
Hjälm, A.
(2012)
From an intergenerational family perspective, geographical distance and proximity have been shown to affect interaction and the extent of help and support between generations. Geographical separation and nearness hence do not only influence the family per se, but might also concern the welfare state, not least in times of population ageing. This study concerns exchange and assistance between elderly parents living very close to an adult child, and is based on interviews with 14 elderly parents. The interviews revealed that help and support flowed in both directions between the close-living generations, but that from the perspective of the elderly some types of help were more acceptable than others to give and receive. Further, the interviews suggested that living close, albeit discussed as allowing extensive interaction and support, should not be understood as a sign of wanting or even accepting more extensive help from the close-living adult child.
”Man blir så glad när det går framåt.” Om familjens situation och behov när barnet har ett funktionshinder och om samhällets insatser ur föräldrarnas perspektiv
Larsson, Lena
(2007)
”No, you don’t know how we feel”: Groupwork with children facing parental loss
Chowns, G.
(2008)
Groupwork with bereaved children has become increasingly common. However, working with children anticipating potential bereavement has received much less attention. Similarly, research within this area in palliative care has been notable for two things - its paucity and its failure to address the perspective of the children themselves. The author, a palliative care social worker, turned to the action research paradigm for an approach that would more effectively engage with and illuminate these children's experiences, and undertook a collaborative inquiry - where the research is conducted with rather than for, on, or about the participants - with nine children aged from seven to fifteen. Collaborative inquiry raises - and challenges - many key issues in both research and groupwork, such as voice, power and identity, ethics and competence. This article addresses a number of these issues, with a particular focus on identity.
”Over the rainbow” a prevention group for bereaved children and families in a rural area
Miller, J.S.
(2010)
Akademisk Avhandling
The death of a loved one is a difficult experience for a child. However, prior research has found several characteristics that put some children at a greater risk than others. This study examined the unique needs that rural communities face trying to provide services to bereaved children and their families. The primary purpose of this study was to evaluate the effectiveness of a one-day bereavement camp for children and families in a rural area who have lost someone close to them. Participants completed quantitative and qualitative measures designed to evaluate the group. The camp was offered on four occasions, but despite intensive recruitment only seven participants attended. Although the group was well-liked and beneficial to those who attended, the recruitment and attendance difficulties suggest this may be an inefficient use of time and money for the provision of bereavement services to the community. A follow-up study was created to investigate the barriers and possible solutions to aid future programs. Fourteen key informants in the community were interviewed to address this topic and grounded theory was utilized to examine the results. Findings were consistent with the difficulties for other rural mental health programming in regards to accessibility and acceptability. Rural core providers must be aware of these unique variables in rural culture that lead to barriers to treatment and determine which strategies fit best to meet the needs of individuals in these communities.
”Patientens rätt till fast vårdkontakt”. Meddelandeblad Nr 9 2012
Socialstyrelsen
(2012)
”Patientens rätt till fast vårdkontakt”. Meddelandeblad Nr 9 2012.
Socialstyrelsen
(2012)
”Småbarnstiden tar ju aldrig slut.” Hur parrelationen påverkas av att vara förälder till ett barn med funktionsnedsättning inom autismspektrat
Högberg, Anette
(2009)
Denna rapport redovisar en undersökning av hur män och kvinnor upplever att parrelationen har påverkats av att de fått ett barn med funktionsnedsättning inom autismspektrum. Studien tar fasta på vad detta kan innebära för familjen i stort, för parrelationen och för självbilden. Rollfördelning och beroende behandlas liksom relationer till släkt, vänner och nätverk. Även hur kompetens och stolthet kan växa fram. Området är outforskat, undersökningen har därför fått en explorativ inriktning. Metoden är halvstrukturerade intervjuer.
”So that´s how I found out I was a young carer and that I actually had been a carer most of my life”: Identifying and supporting hidden young carers
Smyth C, Blaxland M, Cass B.
(2011)
A common theme in the literature on care-giving is the issue of 'hidden' carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a 'normal' familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain 'hidden' and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.
24-timmarscenter - stöd till anhöriga som vårdar demenshandikappade i hemmet
Nyström, C.
(2001)
Rapporter från Anhörig 300-konferenser våren 2001,Anhörig 300
5.98 Million
Ghafour, H.
(2012)
A brief measure of social support: practical and theoretical implications
Sarason IG, Sarason BR, Shearin N, Pierce GR.
(1987)
Two studies leading to the development of a short form of the Social Support Questionnaire (SSQ) are reported. In Study 1 three items selected for high correlations with the total score (SSQ3) were administered to 182 university students together with several personality measures. SSQ3 had acceptable test-retest reliability and correlations with personality variables similar to those of the SSQ. Internal reliability was marginal although acceptable for an instrument with so few items. Study 2 employed three sets of data in developing a six-item instrument (SSQ6). The SSQ6 had high internal reliability and correlated highly with the SSQ and similarly to it with personality variables. The research findings accompanying the development of the short form social support measure suggest that perceived social support in adults may be a reflection of early attachment experience.
A case for inclusion of prolonged grief disorder in DSM-V.
Prigerson, H.G., Vanderwerker, L.C. & Maciejewski, P.K.
(2008)
A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan
Shyu YI, Kuo LM, Chen MC, Chen ST.
(2010)
Aim and objective. To explore the long-term effects of a discharge-preparation programme targeting Taiwanese family caregivers of older patients with stroke.
Background. Little is known about the effects of interventions for caregivers of patients with stroke in Asian and Chinese families.
Design. A randomised experimental design was used.
Method. Participants included 158 older patients with stroke (72 in the experimental group and 86 in the control group) and their family caregivers. A caregiver-oriented intervention programme was designed to increase caregiver preparedness, to enhance caregiver perception of balance between competing needs and to satisfy specific needs during the transition between hospitalisation and discharge. Long-term outcomes were measured by caregiver's health-related quality of life, quality of care, stroke patient's self-care ability, patient's health-related quality of life and service utilisation. Longitudinal data were analysed by the generalised estimating equation approach.
Results. During the 12 months following discharge of older patients with stroke, caregivers in the experimental group provided significantly better quality of care (β = 0·45; p = 0·03) than the control group. Between the sixth–twelfth months following discharge, patients in the control group were more likely to be institutionalised than those in the experimental group (χ2 = 5·11; p = 0·03).
Conclusion. Using a sample from Taiwan, this intervention programme succeeded in improving quality of care provided by family caregivers to older patients with stroke and in decreasing the likelihood of their institutionalisation.
Relevance to clinical practice. Older Chinese patients with stroke and their family caregivers can benefit from an individualised programme that prepares caregivers for patient discharge. Similar programmes may be applicable to other countries with Chinese populations.
A cluster analysis of patients with schizophrenia in community care
Lora A, Cosentino U, Rossini MS, Lanzara D.
(2001)
In 203 patients (aged 15–64 yrs) with schizophrenia, the authors identified different clusters of Ss on the basis of the severity of psychopathology, disability, and family burden. Patient measures included the Disability Assessment Schedule and the Brief Psychiatric Rating Scale. Family burden, including relatives' satisfaction with services provided, was evaluated with the Questionnaire for Family Problems. In the 1st cluster, patients' severity of illness was mild and their use of services low. In the 2nd, patients' disability was more severe; psychiatric symptoms were low in severity, family burden was moderate, and use of community services was more intensive. In the 3rd cluster, patients had serious disability and severe positive symptoms; their families suffered distressing burdens, and their use of hospital and community services was intensive. In the 4th cluster, patients' disability was very severe, negative symptoms were prominent, and relatives' burden was moderate; use of hospital services was frequent, and use of community services was less so. Findings suggest that improving responsiveness to the needs of the most seriously ill patients and their families is a central issue that requires further study and practical implementation. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial
Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J, et al.
(2013)
BACKGROUND:
The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver.
OBJECTIVE:
To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective.
DESIGN:
A pragmatic, multicentre, cluster randomised controlled trial.
SETTING:
Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care.
PARTICIPANTS:
A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient.
INTERVENTION:
The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation.
MAIN OUTCOME MEASURES:
The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months.
RESULTS:
No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year.
CONCLUSIONS:
We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams.
TRIAL REGISTRATION:
Current Controlled Trials ISRCTN49208824.
FUNDING:
This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information.
A comparative study of nursing staff, care recipients´ and their relatives´ perceptions of quality of older people care
Hasson, H., & Arnetz, J. E.
(2010)
Background. Comparisons of different stakeholders' ratings of the quality of older people care can help to drive quality improvement.
Aim. The aim was to compare staff, older care recipients' and their relatives' quality of care ratings.
Design. Cross-sectional questionnaire surveys in 2003 and 2004, using a repeated measures design on an organizational level.
Methods. Nursing staff, care recipients and relatives in two older people care organizations were included. The ratings of an overall quality grade, information, activities, general care and staff skills were compared between the respondent groups.
Results. Care recipients in both organizations rated the overall quality grade significantly higher than nursing staff and relatives. Staff ratings of the information given to care recipients were significantly more positive than care recipients' and relatives' ratings. All three groups gave lowest ratings to the quality of activities offered to care recipients, with lowest ratings from nursing staff.
Conclusions. Concurrent measurements of staff, care recipients and relatives' care quality perceptions can provide a broad evaluation of an organization's strength and limitations.
Relevance to clinical practice. Staff, care recipients' and relatives' perceptions can be useful for older people care organizations and decision makers in developing care processes and outcomes of care.
A Comparison of the Lifetime Economic Prospects of Women Informal Carers and Non-carers, Australia, 2007
Nepal B, Brown L, Ranmuthugala G, Percival R. A
(2011)
Informal care provided at home to family members with a disability is a major part of the disability and aged care system in Australia. Using data from the 2007 Household Income and Labour Dynamics in Australia survey, this study provides an updated comparison of the financial wellbeing, or lack thereof, over the working life of women primary carers and non-carers. This study focuses on selected groups of primary carers and non-carers disaggregated by partnership status, level of education and self-assessed health status. While women primary carers tend to be more financially disadvantaged than non-carers, having a post-school education and being in good health contribute positively to bridge the gaps.
A conceptual framework for examining the promise of the NORC program and Village models to promote aging in place
Greenfield , E. A.,
(2012)
A growing paradigm shift emphasizes efforts to promote aging in place not only by helping aging individuals and families, but also by addressing and engaging communities. This paper explores the idea of developing community supports for aging in place by examining two models that incorporate this approach into practice: Naturally Occurring Retirement Community Supportive Service Programs (NORC programs) and Villages. Drawing on research regarding social–relational aspects of communities and later-life health and well-being, we present an integrative conceptual framework positing three categories of activities and services (civic engagement and empowerment activities; social relationship building activities; services to enhance access to resources)–as well as the initial outcomes and intermediate outcomes–through which the NORC program and Village models potentially achieve their long-term goal of promoting aging in place. Based on this framework, we conclude with directions for future research on community initiatives that support aging in place.
A conceptual framework of outcomes for caregivers of assistive technology users
Demers, L., Fuhrer, M. J., Jutai, J., Lenker, J., Depa, M., & De Ruyter, F.
(2009)
Abstract
OBJECTIVE: To develop and validate the content of a conceptual framework concerning outcomes for caregivers whose recipients are assistive technology users.
DESIGN: The study was designed in four stages. First, a list of potential key variables relevant to the caregivers of assistive technology users was generated from a review of the existing literature and semistructured interviews with caregivers. Second, the variables were analyzed, regrouped, and partitioned, using a conceptual mapping approach. Third, the key areas were anchored in a general stress model of caregiving. Finally, the judgments of rehabilitation experts were used to evaluate the conceptual framework.
RESULTS: An important result of this study is the identification of a complex set of variables that need to be considered when examining the experience of caregivers of assistive technology users. Stressors, such as types of assistance, number of tasks, and physical effort, are predominant contributors to caregiver outcomes along with caregivers' personal resources acting as mediating factors (intervening variables) and assistive technology acting as a key moderating factor (effect modifier variable).
CONCLUSIONS: Recipients' use of assistive technology can enhance caregivers' well being because of its potential for alleviating a number of stressors associated with caregiving. Viewed as a whole, this work demonstrates that the assistive technology experience of caregivers has many facets that merit the attention of outcomes researchers.
A constructionist discourse on resilience
Ungar, M.
(2004)
An ecological approach to the study of resilience, informed by Systems Theory and emphasizing predictable relationships between risk and protective factors, circular causality, and transactional processes, is inadequate to account for the diversity of people's experiences of resilience. In contrast, a constructionist interpretation of resilience reflects a postmodern understanding of the construct that better accounts for cultural and contextual differences in how resilience is expressed by individuals, families, and communities. Research supporting this approach has demonstrated a nonsystemic, nonhierarchical relationship between risk and protective factors that is characteristically chaotic, complex, relative, and contextual. This article critically reviews research findings that support an ecological perspective and explores the emerging literature that informs a constructionist approach to the study of resilience. It will show that an alternate constructionist discourse on resilience greatly enhances our understanding of resilience-related phenomena and our approach to interventions with at-risk youth populations.
A contextually based theory of caregiver suffering
Georges, J. M.
(2010)
A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse
Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al.
(2014)
Objective: Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design. Method: Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization. Results: As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers. Conclusion: Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse
Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al.
(2014)
OBJECTIVE:
Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design.
METHOD:
Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization.
RESULTS:
As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers.
CONCLUSION:
Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed.
A cross general comparison of alcohol challenges at about age 20 in 40 father-offspring pairs
Schuckit, MA., Smith, TL., Kalmijn, J., & Danko, GP.
(2005)
Abstract: Background: A low level of response (LR) to alcohol is one of several genetically-influenced phenotypes associated with an elevated risk for heavy drinking and alcoholism. While most studies support the influence of genes for this characteristic, no data to date have addressed how LR established from alcohol challenges performs in similarly aged subjects across generations
Methods: Between 1978 and 1988, 18-to-25-year-old non-alcohol-dependent Caucasian male drinkers participated in the San Diego Prospective Study alcohol challenges. The paradigms included self-reports of feelings of "High" and "Intoxication," as well as alcohol-related changes in body sway. In recent years, 40 18-to-29-year-old offspring of 25 of these original probands were tested using a similar protocol
Results: Despite the passage of two decades between laboratory sessions across generations, for family history positive (FHP) subjects, significant positive correlations were observed for subjective feelings of intoxication and body sway after alcohol. Parent-offspring correlations were in the predicted direction for subjective feelings for family history negatives (FHNs), but were not significant. Across offspring, LR values were lower for FHPs overall, with significant differences at 60 or 90 min for five items
Conclusions: The similarities in LR across generations, while not proving heritability, are consistent with prior reports regarding genetic influences in the LR to alcohol. The significant correlations across generations and over two decades support the reliability of the alcohol challenge results.
A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation
Perrin, P. B., Johnston, A., Vogel, B., Heesacker, M., Vega-Trujillo, M., Anderson, J.,Rittman, M.
(2010)
Abstract
This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention
A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation.
Perrin PB, Johnston A, Vogel B, Heesacker M, Vega-Trujillo M, Anderson J, et al
(2010)
This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.
A desire to be seen: family caregivers' experiences of their caring role in palliative home care
Linderholm, M., & Friedrichsen, M.
(2010)
Abstract
Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.
A different parenthood?
Starke, Mikaela
(2003)
A dispositional and situational assessment of children’s coping: Testing alternative models of coping
Ayers, T.S., Sandler, I.N., West, S.G. & Roosa, M.W.
(1996)
ABSTRACT Dispositional and situational measures of children's coping were developed using a theoretically based approach. Two studies (N1 = 217; N2 = 303) assessed the psychometric characteristics of these measures in fourth- through sixth-grade children. Confirmatory factor analyses indicated that a four-factor model of dispositional coping (active, distraction, avoidant, and support seeking) provided a better fit to the data than either the problemversus emotion-focused (Lazarus & Folkman, 1984) or passive versus active (Billings & Moos, 1981) coping models. The four-factor model was largely invariant with respect to age and gender. Moderate to high correlations were found between the parallel subscales of the dispositional and situational measures of coping. Although the four factor structures of the dispositional and situational measures were generally similar, factor loadings and correlations between dimensions were not equivalent.
A family perspective for substance abuse: implications from the literature
Gruber KJ, Taylor MF
(2006)
This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.
A family perspective for substance abuse: implications from the literature.
Gruber KJ, Taylor MF.
(2006)
This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.
Keywords: family | substance abuse | family functioning | parental alcohol use | parental drug
use | substance abuse research
A Feasibility Study of Enhanced Group Triple P — Positive Parenting Program for Parents of Children with Attention-deficit/Hyperactivity Disorder
Hoath, F. E., Hoath, F. E., Sanders, M. R., & Sanders, M. R.
(2002)
The aim of this randomised controlled trial was to examine the efficacy of an Attention-deficit/ hyperactivity Disorder (ADHD)-specific, Enhanced (Level 5) Group Triple P intervention. Twenty families with a child with clinically diagnosed ADHD aged between 5 and 9 years participated. Families were randomly assigned to either an enhanced intervention group (Enhanced Group Triple P; EGTP) or a wait list (WL) condition. Using parent reports of child behaviour, parenting practices and family functioning in addition to teacher reports of child behaviour in the school environment, parents in the EGTP condition reported significant reductions in intensity of disruptive child behaviour problems, aversive parenting practices and increases in parental self-efficacy when compared to the WL condition. Parents' reports at 3-month follow-up indicated the gains in child behaviour and parenting practices achieved at post-intervention were maintained.
A functional analysis of resistance during parent training therapy
Patterson, G., & Chamberlain, P.
(1994)
A decade of programmatic studies of resistance during parent training therapy is reviewed, including a brief description of a procedure developed for coding resistant behavior. Analyses of sequential interactions during treatment show that therapists' efforts to intervene produced immediate parental resistance. From baseline to midtreatment phases, there were increases in the therapists' efforts to intervene, which were in turn accompanied by Increases in parental resistance. Contextual variables such as parent pathology also correlated with higher levels of resistance. Decreases in resistance were associated with improvements in parental discipline practices. Parental resistance altered the behavior of the therapists, reducing their effectiveness. A regression analysis shows that improvements in discipline predicted fewer future arrests and out-of-home placement.
A future for family care and dementia intervention research? Challenges and strategies
Zarit SH, Femia EE.
(2008)
Despite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatment trials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the research strategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approaches may have contributed to their limited findings of improvement. We identify some of the methodological issues that may have affected previous trials and suggest strategies for addressing these issues.
A graphic symbol tool for the evaluation of communication, satisfaction and priorities of individuals with intellectual disability who use a speech generating device
Valiquette, C., Sutton, A., & Ska, B.
(2010)
This article reports on the views of individuals with learning disability (LD) on their use of their speech generating devices (SGDs), their satisfaction about their communication, and their priorities. The development of an interview tool made of graphic symbols and entitled Communication, Satisfaction and Priorities of SGD Users (CSPU) is described in detail. The tool was used to support comprehension and to elicit the opinions of eight individuals with LD who had severe communication disorders. Most participants reported that they did not use their SGDs in situations in which they needed them in order to communicate effectively. The participants' parents corroborated these statements but they identified priorities that were different from their child's. The results emphasize the necessity of permitting individuals with severe communication disorders to take part in decision-making by indicating their satisfaction and priorities for intervention. Methodological issues and future use of the evaluation tool in research and in clinical settings are discussed.
A Hermeneutic Phenomenological Analysis of Ageing with a Childhood Onset Disability
Harrison, T. C. & Stuifbergen, A.
(2005)
In this qualitative study, we combined multiple interviews, field notes, life history review charts, and demographic questions to explore the life course experiences of 25 women, ages 55 to 65 years, who developed impairments due to paralytic polio during childhood. Based on a hermeneutic phenomenological methodology using thematic analysis, multiple themes emerged that traced their lives from childhood to later adulthood. The women described how they pushed their bodies and dismissed their physical decline as long as possible. The women's early experiences combined with the culturally defined role expectations for women to influence their perceptions of how to react to changing physical abilities with age.
A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives
Kuh, D., & Ben-Shlomo, Y.
(2002)
Over the last few years there has been increasing interest in conceptualizing disease aetiology within a life course framework.1,,2 This approach is not new to Public Health or unique to epidemiology (see below). However, its current resonance and interest within epidemiology reflects the challenging theoretical framework this approach provides. This issue of the International Journal of Epidemiology has several papers with a 'life course theme'. This accompanying editorial is intended to highlight what we believe are the key conceptual issues around life course epidemiology. We have chosen to use examples from chronic disease epidemiology, but this approach is also applicable within the context of infectious diseases3 and wider notions of health and wellbeing.4
We have defined a life course approach to chronic disease epidemiology1 as the study of long-term effects on chronic disease risk of physical and social exposures during gestation, childhood, adolescence, young adulthood and later adult life. It includes studies of the biological, behavioural and psychosocial pathways that operate across an individual's life course, as well as across generations, to influence the development of chronic diseases.
A locus of control scale for children
Nowicki S, Strickland BR.
(1973)
A study to produce a reliable, methodological precise
measure of generalized locus of control of reinforcement, which can
be group administered to a wide range of children, is reported. The
measure produced, the Nowicki-Strickland Locus of Control Scale, is a
paper and pencil instrument of 40 questions which are marked either
yes or no. The scale was administered to 1017 mostly Caucasian
elementary and high school students, grades 3 through 12, with all
socioeconomic levels except the very highest represented. All mean
intelligence scores were in the average range. Results of the test
administration include: (1) the student's responses became more
internal with age, and substantial individual dif ferences occurred at
the third-grade level; (2) all item-total relationships were moderate
but consistent for all ages; (3) locus of control scores were not
significantly related to social desirability; (4) it was tentaively
concluded that internality is related significantly to higher
occupational level, especially for males; and (5) there was a clear
relationship between locus of control and achievement scores; all
correlations were negative, with most of the significant correlations
present in the male group. Two revised scales of 20 items and 21
items for primary and secondary groups, respectively, were
constructed; the scale was also adopted for use with college and
adult subjects. Eight tables present the study data, and samples of
the 20 and 21 item scales are given. (DB)
A Long-Term Follow-up Study of a Randomized Controlled Trial of Mother-Infant Psychoanalytic Treatment: Outcomes on Mothers and Interactions
SALOMONSSON, M. W., SORJONEN, K. & SALOMONSSON, B.
(2015)
An earlier randomized controlled trial (RCT) compared 80 mother-infant dyads in a Stockholm sample. One had received mother-infant psychoanalytic treatment [mother-infant psychoanalytic therapies (MIP) group], and the other received Child Health Center care (CHCC group). Effects were found on mother-reported depression and expert-rated mother-infant relationship qualities and maternal sensitivity. When the children were 412 years, the dyads were followed up with assessments of the children's attachment representations, social and emotional development, and global functioning, and the mothers' psychological well-being and representations of the child as well as the mother-child interactions. We gathered data from 66 cases approximately 312 years' posttreatment. All scores involving the mothers had now approached community levels. We found effects on maternal depression in favor of MIP, but no other between-group differences. The MIP treatments seemed to have helped the mothers to recover more quickly on personal well-being, to become more sensitive to their babies' suffering, and to better support and appreciate their children throughout infancy and toddlerhood. If so, this would explain why the MIP children had a better global functioning and were more often "OK" and less often "Troubled" at 412 years.
A metaanalysis of behavioral treatments for attention-deficit/hyperactivity disorder
Fabiano, G. A., Pelham, W. E., Coles, E. K., Gnagy, E. M., Chronis-Tuscano, A., & O’Connor, B. C.
(2009)
There is currently controversy regarding the need for and the effectiveness of behavior modification for children with attention-deficit hyperactivity disorder (ADHD) despite years of study and multiple investigations reporting beneficial effects of the intervention. A meta-analysis was conducted by identifying relevant behavioral treatment studies in the literature. One-hundred seventy-four studies of behavioral treatment were identified from 114 individual papers that were appropriate for the meta-analysis. Effect sizes varied by study design but not generally by other study characteristics, such as the demographic variables of the participants in the studies. Overall unweighted effect sizes in between group studies (.83), pre-post studies (.70), within group studies (2.64), and single subject studies (3.78) indicated that behavioral treatments are highly effective. Based on these results, there is strong and consistent evidence that behavioral treatments are effective for treating ADHD.
A meta-analysis of interventions for bereaved children and adolescents
Rosner, R., Kruse, J., & Hagl, M.
(2010)
The main objective of this review was to provide a quantitative and methodologically sound evaluation of existing treatments for bereavement and grief reactions in children and adolescents. Two meta-analyses were conducted: 1 on controlled studies and 1 on uncontrolled studies. The 2 meta-analyses were based on a total of 27 treatment studies published before June 2006. Hedges's g and Cohen's d were used as measures of effect size and a random-effects model was applied. Results yielded small to moderate effect sizes. Interventions for symptomatic or impaired participants tended to show larger effect sizes than interventions for bereaved children and adolescents without symptoms. Promising treatment models were music therapy and trauma/grief-focused school based brief psychotherapy.
A meta-analytic review of components associated with parent training program effectiveness
Kaminski, J. W., Valle, L. A., Filene, J. H., & Boyle, C. L.
(2008)
This component analysis used meta-analytic techniques to synthesize the results of 77 published evaluations of parent training programs (i.e., programs that included the active acquisition of parenting skills) to enhance behavior and adjustment in children aged 0-7. Characteristics of program content and delivery method were used to predict effect sizes on measures of parenting behaviors and children's externalizing behavior. After controlling for differences attributable to research design, program components consistently associated with larger effects included increasing positive parent-child interactions and emotional communication skills, teaching parents to use time out and the importance of parenting consistency, and requiring parents to practice new skills with their children during parent training sessions. Program components consistently associated with smaller effects included teaching parents problem solving; teaching parents to promote children's cognitive, academic, or social skills; and providing other, additional services. The results have implications for selection and strengthening of existing parent training programs.
A mismatch of paradigms disrupts the introduction of psycho-educative interventions for families of persons with smi: An interview study with staff from community services
Persson, Karin; Östman, Margareta; Ingvarsdotter, Karin; Hjärthag, Fredrik
(2018)
Abstract:
Treatment and support of people diagnosed with severe mental illness in Sweden takes place in out-patient psychiatric services or municipality services. Most of the responsibility for support in daily life are provided by the close family. One crucial matter is how to support these families. This research project aimed to investigate the Swedish construction with shared responsibility between county psychiatric care and municipality social care for consumers with severe mental illness affects actions in municipalities in relation to family support. Ten representatives from five municipality settings were interviewed. Five semi-structured interviews were analysed using a thematic analysis. The following themes emerged; One overarching theme, "a mismatch of paradigms", and sub-themes: (a) "accentuating differences", (b) "doubts about including the entire family in the same session" and (c) "lack of a uniform family support policy". We conclude that a shared mandate needs a dialogue between psychiatric and municipality services concerning this mismatch.
A model Community Education Program on Depression and Suicide in Later Life.
Pratt, C. C., Schmall, V. L., Wilson, W., & Benthin, A.
(1991)
This paper describes the development and evaluation of a 3-hour multimedia community education program on depression and suicide in later life. Designed for families, older adults, and service providers, the program provides information and teaches skills needed to recognize and respond to depression and suicidal behavior in the elderly. Compared with a control group, program participants had significant gains in knowledge and in their intent to take appropriate action in support of a depressed person.
A Model for Parental ADHD: Help-Seeking and Readiness to Change
Waite, R., & Ramsay, J. R.
(2010)
Attention deficit/hyperactivity disorder (ADHD) is a lifespan developmental syndrome that is associated with significant impairments. Although there is strong evidence that ADHD persists into adulthood for a majority of individuals, adults with ADHD are identified and treated at much lower rates than are children with ADHD. Considering the heritability of ADHD, there is an increased likelihood that at least one parent of a child with ADHD will also have ADHD, or exhibit prominent features of the disorder. Parental ADHD also affects help-seeking behavior regarding treatment, as well as follow through on treatment recommendations. There is a paucity of data on parental ADHD and help-seeking among underserved populations. The goal of this paper is to review parental ADHD among underserved groups in terms of factors affecting help-seeking behavior and readiness to engage in care. A model for conceptualizing and addressing issues of readiness for change for parents with ADHD is also proposed.
A model of consequences of dementia caregivers' stress process: influence on behavioral symptoms of dementia and caregivers' behavior-related reactions
Campbell, J.
(2009)
Abstract
The purpose of this article is to extend the Schultz and Martire Caregiver Stress-Health Model by explaining consequences of the stress process beyond those related to health in dementia caregivers, including consequences for caregivers and the dyadic unit, and to highlight the dynamic that exists between caregivers' stress, behavioral symptoms of dementia, and behavior-related reactions of caregivers. The relevant literature is reviewed, establishing the pervasive effects of caregivers' stress within a care dyad. Primary informal caregivers play a predominant role in managing environmental stimuli and providing for needs, in particular adjusting their own approaches and demeanor to enhance the care environment. Thus, behavioral symptoms of dementia and the behavior-related reactions of caregivers are conceptualized as a dyadic consequence of the caregivers' stress process. This model presents an extended view of the consequences of caregivers' stress and provides a more holistic, dyadic approach to the issues these vulnerable dyads face. Behavioral symptoms of dementia and behavior-related reactions are seen as amenable to caregiver- or dyad-directed interventions that target stress reduction. This conceptualization may provide support for research, clinical, or policy initiatives that include caregiver-directed or dyadic interventions for these important behavior-related outcomes
A multidisciplinary group programme in rural settings for community-dwelling chronic stroke survivors and their carers: a pilot randomized controlled trial.
Marsden D, Quinn R, Pond N, Golledge R, Neilson C, White J, et al.
(2010)
OBJECTIVES:
To explore whether a group programme for community-dwelling chronic stroke survivors and their carers is feasible in rural settings; to measure the impact of the programme on health-related quality of life and functional performance; and to determine if any benefits gained are maintained.
DESIGN:
Randomized, assessor blind, cross-over, controlled trial.
SETTING:
Rural outpatient.
SUBJECTS:
Twenty-five community-dwelling, chronic stroke survivors and 17 carers of participant stroke survivors.
INTERVENTION:
The intervention group undertook a once-a-week, seven-week group programme combining physical activity, education, self-management principles and a 'healthy options' morning tea. At completion, the control group crossed over to receive the intervention.
MAIN MEASURES:
Stroke Impact Scale (stroke survivors), Health Impact Scale (carers), Six Minute Walk Test, Timed Up and Go, Caregiver Strain Index.
RESULTS:
There were insufficient participants for results to reach statistical significance. However between-group trends favoured the intervention group in the majority of outcome measures for stroke survivors and carers. The majority of measures remained above baseline at 12 weeks post programme for stroke survivor participants. The programme was well attended. Of the seven sessions all participants attended four or more and 88% attended six or seven sessions.
CONCLUSIONS:
This novel programme incorporating physical activity, education and social interaction proved feasible to undertake by a stroke-specific multidisciplinary team in three rural Australian settings. This programme may improve and maintain health-related quality of life and physical functioning for chronic stroke survivors and their carers and warrants further investigation.
A multilevel approach to family-centered prevention in schools: process and outcome
Dishion TJ, Kavanagh K.
(2000)
The Adolescent Transitions Program (ATP) is a multilevel approach to family-based interventions within a middle-school setting. The intervention strategy is based on an ecological framework for studying social and emotional development in children and adolescents, emphasizing a network of contextual factors within which parenting is both directly and indirectly influential on the development of problem behavior. The ATP model includes a universal, selected, and indicated strategy for serving families with young adolescents. The model is designed to address the needs of families of young adolescents that present with a range of problem behavior and diverse developmental histories. The three interventions levels are described, and outcome data are presented, that support the effectiveness of the ATP model. This approach and the associated data are consistent with a broad literature supporting the effectiveness of family interventions, especially for high-risk youth. The effective implementation of family interventions within a school context suggests that these interventions can make a significant contribution to reducing problem behavior and substance use from a public health perspective.
A multilevel approach to family-centered prevention in schools: process and outcome
Dishion TJ, Kavanagh K.
(2000)
The Adolescent Transitions Program (ATP) is a multilevel approach to family-based interventions within a middle-school setting. The intervention strategy is based on an ecological framework for studying social and emotional development in children and adolescents, emphasizing a network of contextual factors within which parenting is both directly and indirectly influential on the development of problem behavior. The ATP model includes a universal, selected, and indicated strategy for serving families with young adolescents. The model is designed to address the needs of families of young adolescents that present with a range of problem behavior and diverse developmental histories. The three interventions levels are described, and outcome data are presented, that support the effectiveness of the ATP model. This approach and the associated data are consistent with a broad literature supporting the effectiveness of family interventions, especially for high-risk youth. The effective implementation of family interventions within a school context suggests that these interventions can make a significant contribution to reducing problem behavior and substance use from a public health perspective.
A multiple-case study of a family-oriented intervention practice in the early rehabilitation phase of persons with aphasia
Blom Johansson M, Carlsson M, Östberg P, Sonnander K.
(2013)
Background: Having a family member with aphasia severely affects the everyday life of the significant others, resulting in their need for support and information. Family-oriented intervention programmes typically consist of support, information, and skill training, such as communication partner training (CPT). However, because of time constraints and perceived lack of skills and routines, such programmes, especially CPT, are not common practice among speech-language pathologists (SLPs).
Aims: To design and evaluate an early family-oriented intervention of persons with stroke-induced moderate to severe aphasia and their significant others in dyads. The intervention was designed to be flexible to meet the needs of each participant, to emotionally support the significant others and supply them with information needed, to include CPT that is easy to learn and conduct for SLPs, and to be able to provide CPT when the persons with aphasia still have access to SLP services.
Methods & Procedures: An evaluative multiple-case study, involving three dyads, was conducted no more than 2 months after the onset of aphasia. The intervention consisted of six sessions: three sessions directed to the significant other (primarily support and information) and three to the dyad (primarily CPT). The intervention was evaluated both qualitatively and quantitatively based on video recordings of conversations and self-assessment questionnaires.
Outcomes & Results: The importance of emotional support as well as information about stroke/aphasia was clearly acknowledged, especially by the significant others. All significant others perceived increased knowledge and understanding of aphasia and related issues.
Communicative skills (as manifested in the video recordings) showed improvements from pre- to post-intervention.
Conclusions: The results corroborate the need for individualised and flexible family-oriented SLP services that are broad in content. Furthermore, the results support the early initiation of such services with recurrent contact. The usefulness of CPT this early in the rehabilitation process was indicated but is yet to be proved.
A new multidimensional measure of children’s perceptions of control
Connell, J.P.
(1985)
Perceived control plays a central role in many motivational and cognitive accounts of behavior. In this study, a new 48-item self-report instrument, the Multidimensional Measure of Children's Perceptions of Control, is described. Perceptions of control are defined as children's understanding of the locus of the sufficient cause for success and failure outcomes. 3 dimensions of third- through ninth-grade children's perceptions of control are independently assessed: internal, powerful others, and unknown. Each of these sources of control is assessed within 3 behavioral domains: (a) cognitive, (b) social, and (c) physical. General items are also included. Perceptions of control over success outcomes and failure outcomes are assessed separately. The psychometric properties of the new measure's subscales are presented. Correlations of the new measure with measures of perceived and actual competence and findings demonstrating the sensitivity of the new measure to developmental, gender, and environmental influences are reported. It is argued that the new measure is an advance over existing measures of internal versus external locus of control in children because it provides domain-specific assessments of 3 separate dimensions of locus of control, including the previously untapped dimension of unknown control.
A new standing posture detector to enable people with multiple disabilities to control environmental stimulation by changing their standing posture through a commercial Wii Balance Board
Shih CH, Shih CT, Chiang MS.
(2010)
This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture) and a Wii Balance Board with a newly developed standing posture detection program (i.e. a new software program turns a Wii Balance Board into a precise standing posture detector). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Both participants significantly increased their target response (body swing) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.
A nursing informatics research agenda for 2008-18: contextual influences and key components
Bakken, S., Stone, P. W., Larsson, E. L.
(2008)
A pilot evaluation of the Family Caregiver Support Program.
Chen, Y.-M., Hedrick, S. C., & Young, H. M.
(2010)
Abstract
The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative analyses were used to detect the differences between users and nonusers of caregiver support services. Six measures included were caregiving appraisal scale, caregiving burden, caregiving mastery, caregiving satisfaction, hour of care, and service satisfaction. Using consulting and education services is associated with lessening of subjective burden; using financial support services is associated with more beneficial caregiver appraisal, such as better caregiver mastery. The findings are practical and helpful for future caregiver service and program development and evaluation and policy making for supporting caregivers. In addition, the evaluation method demonstrated in the study provided a simple and moderately effective method for service agencies which would like to evaluate their family caregiver support services.
A pilot study of adjunctive family psychoeducation in adolescent major depression: Feasibility and treatment effect
Sanford, M., Boyle, M., McCleary, L., Miller, J., Steele, M., Duku, E., et al.
(2006)
Objective: To obtain preliminary evidence of the feasibility and effectiveness of adjunctive family psychoeducation in adolescent major depressive disorder. Method: Participants were from outpatient clinics in Hamilton and London, Ontario. Over 24 months, 41 adolescents ages 13 through 18 years meeting major depressive disorder criteria were recruited (31 in Hamilton, 10 in London). Participants were randomized to usual treatment or usual treatment plus family psychoeducation. Outcome measures were readministered at 2 weeks, mid-treatment, posttreatment, and 3-month follow-up. Intent-to-treat analyses used χ2 and t tests and growth curve analysis. Standardized effects based on growth curve estimates were calculated for continuous outcomes. Results: The London site was withdrawn because of poor participant retention. In Hamilton, no participant missed more than one assessment and there was good family psychoeducation adherence. Compared to controls, participants in the experimental group showed greater improvement in social functioning and adolescent-parent relationships (with medium standardized effect size >0.5), and parents reported greater satisfaction with treatment. Conclusions: There were positive treatment effects on family and social functioning processes postulated to mediate the clinical course of major depressive disorder. The study provides support for further evaluation of family psychoeducation in this clinical population. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
A Preliminary Study of an Extension of a Community Dialectic Behaviour Therapy (DBT) Programme to Adolescents in the Looked After Care System
James AC, Winmill L, Anderson C, Alfoadari K. A
(2011)
Background: Adolescents in the Looked After Care (LAC) system demonstrate high rates of psychiatric disorder and self‐harm; however, there is little evidence for therapies reducing self‐harm in this population. Method: An open evaluation of DBT for adolescents with repeated serious self‐harm in the LAC system was undertaken. Results: An intention‐to‐treat (ITT) analysis showed that DBT was successful at reducing the core elements of depression, hopelessness and self‐harm; however, 35% (7/20) failed to engage. Conclusion: DBT is a useful treatment option; the failure, however, of some adolescents to engage in therapy may be due to their higher initial rates of depression and hopelessness.
A Prospective Four-Year Followup Study of Children at Risk for ADHD: Psychiatric, Neuropsychological, and Psychosocial Outcome
Faraone, S. V, Biederman, J., Mennin, D., Gershon, J., & Tsuang, M. T.
(1996)
BACKGROUND:
Attention-deficit hyperactivity disorder (ADHD) is a familial disorder that places the siblings of ADHD children at high risk for ADHD, conduct, mood, and anxiety disorders. Although the pattern of psychiatric risk has been well documented by prior family studies, neither the short- nor long-term outcome of these high-risk siblings has been prospectively examined.
OBJECTIVE:
To document the 4-year psychiatric, psychosocial, and neuropsychological outcome of the siblings of children with ADHD.
METHOD:
DSM-III-R structured diagnostic interviews and blind raters were used to conduct a 4-year follow-up of siblings from ADHD and control families. The siblings were also evaluated for cognitive, achievement, social, school, and family functioning.
RESULTS:
At follow-up, significant elevations of behavioral, mood, and anxiety disorders were found among the siblings of ADHD children. The high-risk siblings had high rates of school failure and showed evidence of neuropsychological and psychosocial dysfunction. These impairments aggregated among the siblings who had ADHD.
CONCLUSIONS:
The siblings of ADHD children are at high risk for clinically meaningful levels of psychopathology and functional impairment. In addition to supporting hypotheses about the familial transmission of ADHD, the results suggest that the high-risk siblings might be appropriate targets for primary preventive interventions.
A prospective longitudinal study of attachment disorganization/disorientation
CARLSON, E. A.
(1998)
The research explores the antecedents and consequences of attachment disorganization from a prospective longitudinal perspective. The relations of attachment disorganization/disorientation to endogenous (e.g., maternal medical history, infant temperament) and environmental (e.g., maternal caregiving quality, infant history of abuse) antecedents and to behavioral consequences from 24 months to 19 years are examined. For the 157 participants in the longitudinal study, attachment disorganization was correlated significantly with environmental antecedents (e.g., maternal relationship and risk status, caregiving quality, and infant history of maltreatment), but not with available endogenous antecedents. Infant history of attachment disorganization was correlated with consequent variables related to mother-child relationship quality at 24 and 42 months, child behavior problems in preschool, elementary school and high school, and psychopathology and dissociation in adolescence. Structural models suggest that disorganization may mediate the relations between early experience and later psychopathology and dissociation. The findings are considered within a developmental view of psychopathology, that is, pathology defined in terms of process, as a pattern of adaptation constructed by individuals in their environments.
A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.
Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF.
(2013)
Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.
A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.
Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF.
(2013)
Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.
A qualitative study of older informal carers´ experiences and perceptions of their caring role
Nan Greenwood, Carole Pound, Sally Brearley, Raymond Smith
(2019)
Abstract
Background and aims
Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers' experiences and their perceptions of their role.
Methods
Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically.
Findings
Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death.
Conclusions
Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.
A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service
Lilley SA, Lincoln NB, Francis VM.
(2003)
Objective: To investigate stroke patients' and carers' perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.
Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.
Setting: Community stroke services in North Nottinghamshire, UK.
Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.
Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.
A randomized controlled trial evaluating the effect of a support and education programme for spouses of people affected by stroke.
Franzen-Dahlin A, Larson J, Murray V, Wredling R, Billing E.
(2008)
OBJECTIVE:
To determine whether a nurse-led support and education programme for spouses of patients affected by stroke improved the psychological health of the spouses.
DESIGN:
A longitudinal, open, randomized controlled trial.
SAMPLE:
One hundred spouses of stroke patients were randomly assigned to either an intervention or a control group.
SETTING:
The study was conducted in a hospital setting.
INTERVENTION:
The intervention consisted of six group meetings during six months, with a follow-up after further six months. Comparison between the intervention and the control groups was made at baseline, after six and 12 months using analysis with repeated measures.
MAIN MEASURES:
The Comprehensive Psychopathological Rating Scale--Self-Affective for psychological health.
RESULTS:
No significant difference was found between the intervention and control groups concerning overall psychological health. However, a subanalysis revealed that those who participated more frequently in the group meetings (five or six times) had significantly stronger psychological health (P<0.05). Knowledge about stroke increased over time in both groups, but participants in the intervention group learned more (P=0.041).
CONCLUSION:
Encouraging participation in the group meetings of a support programme might have a positive effect on psychological health.
A randomized controlled trial evaluating the effect of a support end education programme for spouses of people affected by stroke
Franzén-Dahlin, Å., Larson, J., Murray, V., Wredling, R., & Billing, E.
(2008)
Objective: To determine whether a nurse-led support and education programme for
spouses of patients affected by stroke improved the psychological health of the
spouses.
Design: A longitudinal, open, randomized controlled trial.
Sample: One hundred spouses of stroke patients were randomly assigned to either
an intervention or a control group.
Setting: The study was conducted in a hospital setting.
Intervention: The intervention consisted of six group meetings during six months,
with a follow-up after further six months. Comparison between the intervention and
the control groups was made at baseline, after six and 12 months using analysis with
repeated measures.
Main measures: The Comprehensive Psychopathological Rating Scale –
Self-Affective for psychological health.
Results: No significant difference was found between the intervention and control
groups concerning overall psychological health. However, a subanalysis revealed that
those who participated more frequently in the group meetings (five or six times) had
significantly stronger psychological health (P50.05). Knowledge about stroke
increased over time in both groups, but participants in the intervention group learned
more (P ¼ 0.041).
Conclusion: Encouraging participation in the group meetings of a support
programme might have a positive effect on psychological health.
Välfärd, vård och omsorg
Szebehely, Marta
(2000)
Rubriken för denna forskarantologi är Välfärd, vård och omsorg. De åtta uppsatser som ingår i volymen berör alla de offentligt finansierade välfärdstjänsterna inom socialtjänstens och sjukvårdens områden, och de förändringar som dessa system har genomgått under 1990-talet.
Välfärdspolitik och funktionshinder
Sjöberg, Malena
(2010)
Den här boken handlar om svensk handikappolitik, som sedan tidigt sjuttiotal är en del av den generella välfärdspolitiken. Det är ganska tyst om handikappfrågorna i dag. De är politiska, men möter inte något stort politiskt eller medialt intresse.
Boken bygger till stora delar på intervjuer med Birgitta Andersson, Barbro Carlsson, Folke Carlsson, Vilhelm Ekensteen, Bengt Lindqvist och Lennart Nolte. De har alla haft ledande positioner i handikapprörelsen och varit med och banat väg för den handikappolitik vi har i dag. Här blickar de tillbaka på det skeende de själva varit med om att utforma och ger sina tankar om varför det blev som det blev. Dessutom invervjuas några forskare om välfärdspolitik och funktionshinder.
Varför har vissa av handikapprörelsens kamper lyckats och andra inte? Varför har samhället gjort ett bra jobb på en del områden, men inte på and ra? Varför står så många fortfarande utanför arbetslivet, fast det har varit en av rörelsens viktigaste frågor i mer än ett halvt sekel? Varför är det så mycket mer intressant att diskutera vad tillgänglighet skulle kosta än att fundera på otillgänglighetens pris i ett modernt samhälle? Och varför ifrågasätts den personliga assistansen ständigt och jämt?
Välkommen till helvetet
Nanna Helsén, Stina Helsén
(2020)
Det hade gått så snabbt, så oerhört snabbt. Innan jag ens hade hunnit reflektera över det hade jag tappat de där första kilona. Och all kontroll. Och plötsligt rasade allt.?
Förloppet är hastigt när 15-åriga Nanna insjuknar i anorexi, på bara några veckor rasar hon i vikt och läggs in för akut vård. Hennes tillstånd är livshotande och livet vänds uppochner för hennes familj, föräldrarna ständigt vid hennes sida. Nanna plågas av grav ångest och är helt i sjukdomens våld. Hennes enda fokus är att låta bli att äta, sluta existera.
Hemma är 13-åriga lillasystern Stina ledsen och arg. Det som tidigare var en nära syskonrelation upphör tvärt. Hon får plötsligt mer frihet än hon önskar och kämpar för att ha en vardag när allt handlar om sjukdom. Stina har heller ingen lust att spela den lättsamma dottern precis när det råkar passa föräldrarna.
Nanna och Stina, idag vuxna, berättar öppet och rättframt om ett år med anorexin och ångesten ur sina olika perspektiv. Sjukdomen påverkar i hög grad anhöriga. Välkommen till helvetet är en drabbande skildring av just anorexi, men mycket är aktuellt även för andra typer av psykisk sjukdom.
Systrarna Nanna Helsén, född 1989, och Stina Helsén, född 1991, är uppvuxna i Stockholm. Välkommen till helvetet är deras första bok. Till vardags arbetar Nanna med affärsutveckling och Stina är lärare.
Vänd dig hit! Guide för kommuner och landsting att kartlägga och utveckla sin första linjeverksamhet för psykisk hälsa hos barn och unga
Sveriges Kommuner och Landsting
(2012)
På många platser i Sverige saknas en tydlig första linje, den nivå som har i uppgift att
först ta emot barn och ungdomar som mår psykiskt dåligt eller deras familjer – oavsett
om problemet har psykologiska, medicinska, sociala eller pedagogiska orsaker.1
Bland
annat inom ramen för Psynk – psykisk hälsa barn och unga pågår såväl lokalt som nationellt
utvecklingsarbete för att förbättra situationen för barn som söker hjälp för någon
form av psykisk ohälsa eller relaterade problem.
Denna guide ska vara ett stöd för beslutsfattare i kommuner och landsting som vill
kartlägga sin första linje och hitta utvecklingsmöjligheter.
Guiden är indelad i två sektioner. Den första sektionen, Kapitel 1–4, beskriver vad
en första linje är och vad som karakteriserar en bra första linje, samt möjliga sätt att
organisera första linjen. Den andra sektionen, Praktisk del 1 och 2, innehåller praktiskt
stöd som kan hjälpa kommuner och landsting att beskriva sin modell och ger vägledning
kring möjliga sätt att organisera arbetet i framtiden.
Denna guide ingår i en serie publikationer som tas fram inom Psynk. Den kan läsas
fristående, men läses med fördel tillsammans med skrifterna "Rätt insatser på rätt nivå
för barn och ungdomar med psykisk ohälsa – en kunskapssammanställning" 2, "Värdet
av en god uppväxt – Sociala investeringar för framtidens välfärd" 3 samt "Slutrapport
från Modellområdesprojektet 2009–2011" 1. Vidare handledning, inspiration och material
återfinns på projektets hemsida www.skl.se/psynk eller kan fås genom kontakt med
det centrala projektkansliet på Sveriges Kommuner och Landsting i Stockholm.
Vändpunkten - Att arbeta med barn till alkoholister
Lindstein, T.
(1995)
Vändpunkten – ur barnens och ungdomarnas perspektiv
Lindstein, Thomas
(2001)
Vändpunkten Kristianstad – en stödgruppsverksamhet
Olausson Amanda & Persson Gina
(2011)
Examensarbete våren 2011, socionomprogrammet
Vändpunkten. Att arbeta med barn till alkoholister
Lindstein, T.
(1995)
Vänta inte! Guide för investeringar i tidiga insatser för barn och unga
Sveriges Kommuner och Landsting
(2012)
Växeln, hallå hallå? : samordning och integrerad vård för äldre. Lic
Arman, R.
(2007)
Yngre personer med demenssjukdom och närstående till dessa personer. En kunskapssammanställning
Skovdal, Kirsti, Palo-Bengtsson, Liisa, Anttila, Sten, Höjgård, Ulla, Fredriksson, Maja, Jonsson, Ann-Kristin, Glad, Johan
(2007)
Yngre personer med demenssjukdom. En kartläggning av behov och verksamheter riktade till yngre personer med demens och deras anhöriga i Stockholms län, 2007:4
Berger, A.-K.
(2007)
Young adults with attention deficit hyperactivity disorder: subtype differences in comorbidity, educational, and clinical history
Murphy, KR., Barkley, RA., Bush, T.
(2002)
Abstract
The present study sought to examine subtype differences in comorbidity and in antisocial, educational, and treatment histories among young adults (ages 17-27) with attention deficit hyperactivity disorder (ADHD). Comparisons were made between ADHD Combined Type (ADHD-C; N = 60) and Predominantly Inattentive Type (ADHD-I; N = 36) relative to each other and to a community control group of 64 adults. Both ADHD groups had significantly less education, were less likely to have graduated from college, and were more likely to have received special educational placement in high school. Both groups also presented with a greater likelihood of dysthymia, alcohol dependence/abuse, cannabis dependence/abuse, and learning disorders, as well as greater psychological distress on all scales of the SCL-90-R than the control group. Both ADHD groups were more likely to have received psychiatric medication and other mental health services than control adults. In comparison with ADHD-I, adults with ADHD-C differed in only a few respects. The C-type adults were more likely to have oppositional defiant disorder, to experience interpersonal hostility and paranoia, to have attempted suicide, and to have been arrested than the ADHD-I adults. These results are generally consistent with previous studies of ADHD in children, extend these findings to adults with ADHD, and suggest that the greater impulsivity associated with the ADHD-C subtype may predispose toward greater antisocial behavior and its consequences than does ADHD-I type in adults.
Young carers
Becker, S.
(2000)
Young Carers and their families
Becker, Saul, Aldridge, Jo & Dearden, Chris
(1998)
hildren caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.
Young carers in Sweden – A short overview
Monica Nordenfors, Charlotte Melander
(2017)
This short overview 'Young Carers in Sweden' is a summary of two reports on young carers in Sweden. The government initiated a wide spreading development work, in which the National Board of Health and Welfare, the National Institute of Public Health, Swedish municipalities and health care regions collaborated to strengthen support to children and young people in families with substance abuse, serious illness or mental ill-health, violence or death of a parent. These two reports provide the foundation for this work. The references to the original reports are found at the end of the overview.
Young Carers in the United Kingdom: A Profile
Dearden, C., & Becker, S.
(1998)
Young Carers in the United Kingdom is the largest survey to date of children with caregiving
responsibilities. The book contains information on over 2,300 young people,
all aged 18 and under, who provide care and support for ill or disabled family
members and who are also in contact with a specialist young carers project. It
combines a statistical profile of these children with case studies of 22 young people,
half of whom have been assessed by social services, half who have not.
The book draws comparisons between the position of young carers now and in 1995
when a similar survey of a smaller number of young carers was conducted (see
notes below). While the situation shows some improvements, notably in a two per
cent reduction in the numbers providing intimate personal care, and a five per cent
reduction in those experiencing educational difficulties, young carers as a whole
remain a vulnerable group of children. Specialist support projects, of which there are
now over 100 in the UK, are greatly valued by young carers and their families. These
projects help young carers to achieve their rights and to access other avenues of
support which will both reduce the incidence of children as carers and ensure that ill
and disabled family members also receive the support to which they are entitled.
In the past young carers have been largely ignored in community care legislation,
but the Carers (Recognition and Services) Act of 1995 allows them to seek an
assessment in their own right when the person they support is being assessed. The
2
Children Act 1989 also protects children in need and many local authorities now
accept that young carers fall into this category and should be supported as such. The
book discusses the incidence of assessment under both Acts and case study material
provides an insight into how children and young people experience both the process
of assessment and its outcomes.
Young Carers Research Project: Background Papers
Carers Australia
(2001)
Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice
Peleg-Oren N, Teichman M.
(2006)
This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.
Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice.
Peleg-Oren N, Teichman M.
(2006)
This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.
Young children’s understanding of denial
Austin, K., Theakston, A., Lieven, E., & Tomasello, M.
(2014)
Although a fair amount is known about young children's production of negation, little is known about their comprehension. Here, we focus on arguably the most complex basic form, denial, and how young children understand denial, when it is expressed in response to a question with gesture, single word, or sentence. One hundred twenty-six children in 3 age groups (Ms = 1 year 9 months, 2 years 0 months, and 2 years 4 months) witnessed an adult look into 1 of 2 buckets and then, in response to a question about whether the toy was in there, communicate either something positive (positive head nod, "yes," "it is in this bucket") or negative (negative head shake, "No," "It's not in this bucket"). The youngest children did not search differently in response to any of the communicative cues (nor in response to an additional cue using both gesture and single word). Children at 2 years 0 months searched at above-chance levels only in response to the negative word and negative sentence. Children at 2 years 4 months were successful with all 3 types of cues in both positive and negative modalities, with the exception of the positive sentence. Young children thus seem to understand the denial of a statement before they understand its affirmation, and they understand linguistic means of expressing denial before they understand gestural means.
Young children’s understanding of denial
Austin, K., Theakston, A., Lieven, E., & Tomasello, M.
(2014)
Although a fair amount is known about young children's production of negation, little is known about their comprehension. Here, we focus on arguably the most complex basic form, denial, and how young children understand denial, when it is expressed in response to a question with gesture, single word, or sentence. One hundred twenty-six children in 3 age groups (Ms = 1 year 9 months, 2 years 0 months, and 2 years 4 months) witnessed an adult look into 1 of 2 buckets and then, in response to a question about whether the toy was in there, communicate either something positive (positive head nod, "yes," "it is in this bucket") or negative (negative head shake, "No," "It's not in this bucket"). The youngest children did not search differently in response to any of the communicative cues (nor in response to an additional cue using both gesture and single word). Children at 2 years 0 months searched at above-chance levels only in response to the negative word and negative sentence. Children at 2 years 4 months were successful with all 3 types of cues in both positive and negative modalities, with the exception of the positive sentence. Young children thus seem to understand the denial of a statement before they understand its affirmation, and they understand linguistic means of expressing denial before they understand gestural means. (PsycINFO Database Record (c) 2014 APA, all rights reserved)
Young people living with parental bereavement: insights from an ethnographic study of a UK childhood bereavement service
Brewer, J. & Sparkes, A.
(2011)
The purpose of this two-year ethnographic study was to explore the experiences of parentally bereaved young people who sought support from the Rocky Centre (a pseudonym), a childhood bereavement service in the United Kingdom. Data were generated from extended periods of participant observation and semi-structured interviews with both staff and service users. In this article we focus specifically on the interviews with 13 young people to elucidate the factors that helped them to live with parental bereavement. Of these participants, four had been recently bereaved and nine had experienced the death of a parent over ten years ago. Seven key themes emerged from the analysis of the interview data: expressing emotion, physical activity, positive adult relationship(s), area of competence, friendships/social support, having fun/humour and transcendence. These themes are discussed in turn, and implications for research and practice are addressed.
Youth Victimization in Sweden: Prevalence, Characteristics and Relation to Mental Health and Behavioral Problems in Young Adulthood
Cater, Å. K., Andershed, A-K., & Andershed, H.
(2014)
The present study examines multiple types of victimization simultaneously, their prevalence and characteristics in childhood and adolescence, and it examines the associations between victimization and poly-victimization on the one hand and single and multiple mental health and behavioral problems on the other. The sample consisted of 2,500 Swedish young adults (20-24 years) who provided detailed report of multiple types of lifetime victimization and current health and behaviors via an interview and a questionnaire. Results showed that it was more common to be victimized in adolescence than in childhood and more common to be victimized repeatedly rather than a single time, among both males and females. Males and females were victimized in noticeably different ways and partially at different places and by different perpetrators. With regard to mental health and behavioral problems, anxiety, post-traumatic stress, self-harm, and criminality were clearly overrepresented among both males and females who had experienced any type of victimization. Poly-victimization was related to single and multiple mental health and behavioral problems among both males and females. We conclude that professionals need to conduct thorough evaluations of victimization when completing mental health assessments among troubled youths, and that youth might benefit from the development of interventions for poly-victimized youth.
Youth with disabilities' perspectives of the environment and participation: a qualitative meta-synthesis
Kramer JM, Olsen S, Mermelstein M, Balcells A, Liljenquist K.
(2012)
Meta-syntheses can enhance our knowledge regarding the impact of the environment on the participation of youth with disabilities and generate theoretical frameworks to inform policy and best practices. The purpose of this study was to describe school-aged youth with disabilities' perspectives regarding the impact of the environment and modifications on their participation. A meta-synthesis systematically integrates qualitative evidence from multiple studies. Six databases were searched and 1287 citations reviewed for inclusion by two independent raters; 15 qualitative articles were selected for inclusion. Two independent reviewers evaluated the quality of each study and coded the results section. Patterns between codes within and across articles were examined using a constant comparative approach. Environments may be more or less inclusive for youth with disabilities depending upon others' understanding of individual abilities and needs, youth involvement in decisions about accommodations, and quality of services and policies. Youth implemented strategies to negotiate environmental barriers and appraised the quality of their participation based on the extent to which they engaged alongside peers. This meta-synthesis generated a framework illustrating the relationship between the environment, modifications and participation, and provided a conceptualization of participation grounded in the lived experiences of youth with disabilities. Findings reveal gaps in current knowledge and highlight the importance of involving youth with disabilities in decision making.
Ytterligare medel för implementering av bestämmelsen i 5 kap. 10 § socialtjänstlagen (SoL)
Socialstyrelsen
(2010)
Ytterligare medel till ett varaktigt stöd för anhöriga. Meddelandeblad, (2008-1-6)
Socialstyrelsen
(2008)
Åldern har sin rätt – om att åldras med intellektuell funktionsnedsättning
Svenskt demenscentrum
(2018)
Om åldrandet hos personer med intellektuell funktionsnedsättning finns inte mycket skrivet. Det är bakgrunden till att Riksförbundet FUB och Svenskt Demenscentrum ger ut denna bok. Att åldras med autism respektive Downs syndrom och När glömska blir ensjukdom är några teman. Vidare behandlas förändrade sociala villkor, när den dagliga verksamheten upphör, och hur våra egnaföreställningar av åldrandet kan påverka personerna. Boken tarockså upp vård i livets slutskede och hur personal och anhörigakan möta existentiella frågor kring döden.
Vid sidan av boken finns två avgiftsfria webbutbildningar om att åldras med intellektuell funktionsnedsättning. Boken och utbildningarna har finansierats av Allmänna arvsfonden.
Åldrande, död och anhörigskap
Whitaker, A.
(2009)
Åldrandet : individ, familj, samhälle
Berg, S.
(2007)
Åldrandet och äldreomsorgen
Thorslund, M., & Wånell, S. E.
(2006)
Årsrapport för Svenska Palliativregistret verksamhetsåret 2015
Svenska Palliativregistret
(2015)
2015 rapporterades 60 013 dödsfall vilket utgör 66 % av alla inträffade dödsfall. Antalet
rapporterade dödsfall är därmed i stort sett konstant 2013 – 2015 men andelen varierar
något då olika antal avlidit respektive år.
Geografiskt har andelen rapporterade utifrån folkbokföringskommun stigit minst 10 % i 51
kommuner, ligger inom +- 10 % i 172 kommuner samt sjunkit mer än 10 % i 68 kommuner
2015 jämfört med 2013.
I 84 % av rapporterade av vården väntade dödsfall 2015 anges att läkaren gjort en
dokumenterad medicinsk bedömning om att vården övergår i palliativ vård i livets slut. Det är
endast i 59 % av dessa fall som det också rapporteras att det finns ett dokumenterat
läkarsamtal om denna bedömning med patient eller om denne är oförmögen att delta med
närstående.
Den rapporterade tillgången av specialiserad palliativ vård (hospice + slutenvård +
specialiserad hemsjukvård + palliativ konsult/rådgivningsteam) varierar kraftigt mellan länen
från 6,9 till 23,1 %.
Medianvårdtiden inom den specialiserade palliativa slutenvården har sjunkit från 11 till 9
dagar och inom den specialiserade palliativa hemsjukvården ifrån 56 till 46 dagar. Detta går
emot grundprinciperna i det palliativa förhållningssättet där tidigt palliativt stöd har visat sig
vara av godo.
Cancer fortsätter att dominera som diagnos inom den specialiserade palliativa vården i
Sverige (87%) trots att patienter med andra sjukdomar kan ha lika stora behov.
Vårdkvaliteten är hög, men till exempel inom smärt- och symtomskattning finns det utrymme
för förbättring.
Resultatmässigt har för väntade dödsfall en sammanslagning av dokumenterade
brytpunktssamtal, ordination av inj-läkemedel mot ångest vid behov, smärtskattning samt
dokumenterad munhälsobedömning använts. Detta fortsätter att förbättras och var 2015
58,3 % - en förbättring med 2,5 % jämfört med 2014.
Symtomet illamående förekommer hos 15 procent av patienterna under sista veckan i livet.
Över åren har vi blivit bättre på att lindra symtomet, det förekommer huvudsakligen hos
cancerpatienter och två tredjedelar av dessa patienter har tillgång till någon form av
specialiserad palliativ kompetens.
Bland övriga viktiga indikatorer ses generellt ingen förändring mellan åren bland de väntade
dödsfallen beträffande andelen med trycksår eller andelen som haft dropp eller sondnäring
sista levnadsdygnet.
Svenska palliativregistret har fått sin första medicine doktor som byggt sin avhandling
huvudsakligen på registrets data. Ytterligare 2 vetenskapliga artiklar baserade på registerdata
har publicerats under 2015 där man dels konstaterar att hög ålder bland cancerpatienter är
en riskfaktor för sämre kvalitet och dels konstateras att patienter med KOL inte erbjuds
samma vårdinnehåll som cancerpatienter. Vidare har 4 uppsatser baserade på registerdata
kommit till registrets kännedom vars innehåll förtjänar att spridas.
Återhämtning från svåra psykiska störningar
Topor, Alain
(2001)
De flesta människor som drabbas av svåra psykiska problem återhämtar sig, helt eller delvis. Att återhämta sig betyder inte att man nödvändigtvis är fri från alla symtom utan kan även innebära att man kan hantera dem och leva ett acceptabelt liv. Bland läkare, vårdpersonal och även bland dem som själva har psykiska problem finns en utbredd pessimism om möjligheterna att återhämta sig. Men i dag har vi tillgång till forskningsresultat som motsäger föreställningar om de psykiska störningarna som varande livslånga, kroniska sjukdomar. Forskning visar att de flesta människor som exempelvis fått psykiatrins mest belastade diagnos – schizofreni – återhämtar sig.
Vad hjälper människor med svåra psykiska problem att återhämta sig? Vad gör de själva, och vad kan andra – professionella, anhöriga, närstående – göra för att bidra till denna process? Boken resonerar kring professionalitet och vad ett återhämtningsinriktat professionellt arbete kan innebära. Återhämtning är en unik individuell process. Helt olika insatser kan bidra till återhämtningsprocessen för olika personer och för samma person i olika perioder. Den kan därför aldrig reduceras till en metod som kan tillämpas lika på flera patienter. Boken önskar förena individernas – brukarnas – erfarenhetsbaserade kunskap med kunskap från forskningen. Utgångspunkten är att människor återhämtar sig från svåra psykiska problem och att deras egna berättelser om återhämtningsarbetet erbjuder trovärdig kunskap.
Boken vänder sig dels till brukare och närstående, dels till personal verksam inom psykiatri och socialtjänst. Den är också avsedd som kursbok för högskolestuderande inom områdena socialt arbete, psykologi, vård och medicin. Boken används dessutom som lärobok/komplement till cirkelmaterialet vid studiecirklar inom ramen för Återhämtningsprojektet (som drivs av Riksförbundet för Social och Mental Hälsa [RSMH], Forskningsstiftelsen Humlan och FoU-enheten vid SPO Psykiatrin Södra, Stockholms läns landsting) som i första hand löper under åren 2004 och 2005.
Alain Topor är leg psykologi, fil dr och chef för FoU-enheten vid SPO Psykiatrin Södra inom Stockholms läns landsting. Han är även forskningschef på institutionen för socialt arbete, Stockholms universitet. Han har tidigare arbetat inom socialtjänst och psykiatri som familjebehandlare, behandlingsansvarig, handledare samt med forskning och utveckling inom socialtjänsten och psykiatrin.
Åtgärder mot fusk och felaktigheter med assistansersättning. Betänkande av Utredningen om assistansersättningens kostnader
SOU
(2012)
Utredningens uppdrag innebär dels att beskriva och analysera orsaker till fusk, oegentligheter och överutnyttjande inom assistansersättningen samt föreslå åtgärder för att förhindra detta och stärka möjligheterna till uppföljning och kontroll, dels att analysera grundorsakerna till kostnadsutvecklingen inom assistansersättningen bland annat vad gäller övervältring av kostnader mellan huvudmän samt föreslå åtgärder för att komma till rätta med denna utveckling.
Åtstramningens pris. Hur påverkas de medelålders barnen av äldreomsorgens minskning?
Szebehely, M., Ulmanen, P.
(2012)
Professor Marta Szebehely och doktorand Petra Ulmanen står bakom en ny rapport om framtidens äldreomsorg. En utgångspunkt för deras rapport är att vi måste börja betrakta äldreomsorgen på ett liknande sätt som barnomsorgen. Båda dessa är viktiga för att uppnå de jämlikhets- och jämställdhetsambitioner som finns inskrivna i svensk välfärdspolitik. Bara om det finns välutbyggda och välfungerande omsorgstjänster kan både kvinnor och män i alla sociala skikt förvärvsarbeta över hela livscykeln.
I sin studie över hur den svenska äldreomsorgen har förändrats över tid har författarna analyserat SCB:s stora intervjustudier av befolkningens levnadsförhållanden samt sett på tidigare svensk och internationell forskning. Några av de viktigaste slutsatserna som författarna drar är:
Äldreomsorgen har minskat under de senaste tre decennierna. Även om hemtjänsten har ökat så har detta inte skett i en sådan grad att motsvarande minskning av äldreboenden har kompenserats.
Bortfallet av offentlig omsorg har i huvudsak ersatts av anhörigas insatser. Även om privat köpt hjälp i viss mån har ersatt den offentliga omsorgen är det i första hand de anhöriga, framförallt de medelålders döttrarna, som kompenserar för den minskade offentliga omsorgen. Detta gäller i synnerhet bland kvinnor med lägre utbildning.
Det finns ett tydligt internationellt samband mellan hur välutbyggd den offentliga äldreomsorgen är och hur många medelålders kvinnor som förvärvsarbetar. En försämrad äldreomsorg riskerar därmed att få konsekvenser för de medelålders barnen, framförallt döttrarnas, arbetsutbud.
Unga omsorgsgivare som tar hand om eller ger hjälp och stöd till vänner med hälsorelaterade tillstånd
Brolin, Rosita
(2025)
Sammanfattning
Begreppet Unga omsorgsgivare (internationellt Young Carers) associeras oftast till barn som ger vård, hjälp eller stöd till en familjemedlem som har ett hälsorelaterat tillstånd. Forskning har dock visat att många barn och ungdomar tar på sig ett omsorgsansvar för vänner. I texten används begreppet ”vänstödjare” för denna grupp av ungdomar. Som exempel kan nämnas barn och unga som har långa chatt-konversationer sent på kvällen med en vän som mår dåligt och inte kan sova, barn och unga som ser till att en vän tar sig till skolan och får i sig mat varje dag, eller barn och unga som lever med en ständig oro för att bästa vännen skall ta livet av sig.
Kapitlet bygger på forskningsresultat och författaren konstaterar inledningsvis att barn och unga som tar hand om, eller ger stöd och hjälp till vänner, inte ingår i de nuvarande svenska och internationella definitionerna av begreppen Barn som anhöriga och Unga omsorgsgivare. I inledningen betonas vänners betydelse för barn som har en funktionsnedsättning, långvarig sjukdom, eller psykisk ohälsa. En fallbeskrivning illustrerar hur det kan vara att som ung axla ett omsorgsansvar för en nära vän.
Som bakgrund presenteras resultat från de senaste femton årens forskning om hur ett omfattande omsorgsansvar kan påverka unga människors liv, såväl kortsiktigt som långsiktigt. Deras förmåga att hjälpa och stödja kan medföra att de känner sig starka och att deras självförtroende ökar, men på sikt medför ett omfattande omsorgsansvar ökade risker för negativ påverkan på hälsa och välbefinnande.
Huvuddelen av kapitlet bygger på en europeisk och en amerikansk forskningsstudie om tonåringar som tar hand om, eller ger hjälp och stöd till vänner som har ett hälsorelaterat tillstånd. Författaren beskriver bland annat ungdomarnas omsorgs-aktiviteter, samt redogör för deras nivå av omsorgsansvar, påverkan på ungdom-arnas egen livssituation, skolgång, hälsa och välmående. Båda studiernas resultat visade att det ofta handlade om att ge emotionellt stöd. Ungdomarna, som kände ett stort ansvar, såg till att finnas till hands så mycket som möjligt, ibland både dag och natt. Omsorgsrollen gav dem en positiv självbild, men medförde samtidigt negativa effekter i form av stress, oro och rädsla, vilket för en del av dem ledde till egen psykisk ohälsa. De unga vänstödjarna rapporterade lägre nivåer av hälsorelaterad livskvalitet och allmän hälsa jämfört med andra jämnåriga som inte hade en omsorgsroll, men även sämre än de jämnåriga som hade ett omsorgsansvar för familjemedlemmar. De flesta av vänstödjarna stod helt utan stöd från vuxenvärlden.
Kapitlet avslutas med författarens egna reflektioner kring de presenterade forsk-ningsresultaten och hur den kunskapen kan användas för att synliggöra denna grupp av Unga omsorgsgivare och ge dem det stöd de önskar och behöver.
Syftet med kapitlet är att belysa de unga vänstödjarnas nivå av omsorgsansvar, påverkan på deras skolgång, upplevd hälsa, samt vilket stöd de själva får och vilket stöd de önskar.
Barn som är anhöriga och unga omsorgsgivare
Brolin, Rosita
(2025)
Sammanfattning
Begreppet Barn som anhöriga används i huvudsak i Sverige. Internationellt används oftast endast begreppet Young Carers (Unga omsorgsgivare). I detta kapitel belyses skillnaden mellan de båda svenska begreppen Barn som anhöriga och Unga omsorgsgivare. En del barn som är anhöriga tar på sig, eller blir tilldelade, ett ansvar att ta hand om, ge vård, hjälp eller stöd till en eller flera närstående. De kan då beskrivas som Unga omsorgsgivare. Detta gäller dock inte alla barn som är anhöriga.
Kapitlet, som bygger på forskningsresultat, inleds med en redogörelse för defini-tionerna av de båda begreppen Barn som anhöriga och Unga omsorgsgivare (internationellt Young Carers). En fallbeskrivning illustrerar hur vardagslivet kan se ut för barn som är anhöriga, men som inte har ett omfattande omsorgsansvar. Direkt därefter följer en fallbeskrivning som illustrerar hur vardagslivet kan se ut för en ung omsorgsgivare.
I bakgrundsavsnittet ger författaren en sammanfattning av de senaste tolv årens forskning om Unga omsorgsgivare och vilka riskfaktorer som denna forskning har identifierat, exempelvis negativ påverkan på skolgång, socialt liv, hälsa och välbe-finnande. Bakgrundsavsnittet innehåller även en genomgång av de politiska beslut som har tagits de senaste sex åren inom området, nytillkomna lagar och bestäm-melser, samt pågående politiskt arbete.
Efter inledning och bakgrund presenteras aktuell forskning som har fokuserat på skillnaderna mellan att vara en Ung omsorgsgivare och att vara en ung anhörig utan omfattande omsorgsansvar. Resultaten från forskningsstudier i Sverige och Frankrike presenteras. Med utgångspunkt från ungdomarnas livssituation och omsorgsansvar delas ungdomarna upp i tre grupper: Unga omsorgsgivare; Unga anhöriga utan omfattande omsorgsansvar; Unga som inte är anhöriga. I båda studierna gjordes jämförelser mellan dessa tre grupper när det gäller köns-fördelning, etnisk bakgrund, omsorgsuppgifter och nivå av omsorgsaktiviteter, påverkan på skolgången, upplevd hälsa och välbefinnande. Såväl Unga omsorgs-givare som Unga anhöriga utan omsorgsansvar rapporterade lägre nivåer av hälsorelaterad livskvalitet, jämfört med Unga som inte var anhöriga. Ett påtagligt resultat i båda studierna var att psykisk ohälsa var betydligt vanligare i gruppen Unga omsorgsgivare, jämfört med de andra två grupperna. Den svenska studien visade dessutom att många Unga omsorgsgivare står helt utan stöd.
Kapitlet avslutas med reflektioner kring forskningsresultaten, vad vi kan lära oss av dessa och hur vi kan använda oss av denna nya kunskap i arbetet med att utveckla förebyggande stöd och därmed minska risken för långsiktig negativ påverkan på de ungas sociala liv, skolgång, hälsa och välbefinnande.
Kapitlets syfte är att bidra med kunskap om skillnaden mellan att vara en Ung omsorgsgivare och att vara Barn som anhörig utan att ha ett omfattande omsorgs-ansvar.
Professionellt stöd till anhöriga Nka 2025:1 Inspirationsmaterial - anhörigkonsulentens roll i en förebyggande socialtjänst
Hagiwara M., Magnusson L.
(2025)
Inspirationsmaterialet ”Professionellt stöd till anhöriga – anhörigkonsulentens roll i en förebyggande socialtjänst” bygger på litteraturstudier, seminarier och workshops med anhörigkonsulenter i Sveriges Kommunala Anhörigstödsnätverk (SKA). Yrkesrollen anhörigkonsulent, eller motsvarande, är ung och har vuxit fram under 2000-talet. Detta som en del i en ökad medvetenhet om anhörigas, inte sällan omfattande insatser, för sina närstående. Uppdraget som anhörigkonsulent är mycket varierande mellan Sveriges kommuner. Inspirationsmaterialet har utarbetats med stöd från Stiftelsen Uppsala Hemsysterskolas fond.
Perceived Effectiveness of Components of Interventions to Support People Bereaved By Suicide
Hofmann, L. Putri, A. K. Pitman, A. Bantjes, J. Castelli Dransart, D. A. Causer, H. Cerel, J. Chow, A. De Leo, D. Feigelman, B. Genest, C. Griffin, E. Hybholt, L. Kawashima, D. Kolves, K. Krysinska, K. Leaune, E. Leenaars, A. Levi-Belz, Y. McNally, S. Omerov, P. Pelaez, S. Peprah, J. Postuvan, V. Rothes, I. A. Scavacini, K. Scocco, P. Seibl, R. Hagstrom, A. S. Skruibis, P. Thomyangkoon, P. Tiatia-Siau, J. Van der Hallen, R. Wagner, B. Andriessen, K.
(2025)
Background: Suicide bereavement increases the probability of adverse outcomes related to grief, social functioning, mental health, and suicidal behavior. While more support for individuals bereaved by suicide has become available, the evidence regarding its effectiveness is not straightforward. The literature suggests that identifying best-practice components is key in designing effective postvention interventions. Aims: This metareview aims to identify components of suicide bereavement interventions perceived to be effective by suicide-bereaved people. Method: The review adhered to preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. Systematic searches in Medline, PsycINFO, Embase, Emcare, EBM Reviews, Scopus, and Web of Science identified 11 eligible systematic reviews published between 2008 and 2023. The methodological quality was assessed using the Measurement Tool to Assess Systematic Reviews (AMSTAR-2) (PROSPERO registration CRD42023458300). Results: Our narrative synthesis reported the components perceived to be effective in relation to structure and content of interventions, facilitators, and modality (peer, group, community, online). Limitations: The quality of the included reviews varied considerably, and not all reviews reported on perceived effectiveness of interventions' components. Meta-analysis of findings was not possible due to study heterogeneity. Conclusion: The findings provide crucial information for researchers, service providers, and policymakers to enhance the provision of evidence-based support for people bereaved by suicide.
Risk och prognos i socialt arbete med barn: forskningsmetoder och resultat.
Lagerberg, D. & Sundelin, C.
(2000)
Risks and interventions for the parentally bereaved child
Lutzke, J.R., Ayers, T.S., Sandler, I.N. & Barr, A.
(1997)
Risks and outcomes associated with disorganized/controlling patterns of attachment att age three years in the national institute of child health & human development study of early child care and youth development
O'Connor, E., Bureau, J. F., McCartney, K., & Lyons-Ruth, K.
(2011)
Disorganized/controlling attachment in preschool has been found to be associated with maternal and child maladjustment, making it of keen interest in the study of psychopathology. Additional work is needed, however, to better understand disorganized/controlling attachment occurring as early as age three. The primary aims of this study were to evaluate risk factors and outcomes associated with disorganized/controlling behavior at age three and to evaluate the risk factors and outcomes differentiating the four subtypes of disorganized/controlling attachment. Analyses were conducted with the first two phases of the NICHD Study of Early Child Care and Youth Development, a prospective study of 1,364 children from birth. At 36 months of age, across the attachment-relevant domains of maternal well-being, mother-child interactions, and child social adaptation, the disorganized/controlling group evidenced the most maladaptive patterns in comparison to both secure and insecure-organized groups. At 54 months of age, the disorganized/controlling group displayed the highest levels of internalizing and externalizing behavior problems, as rated by mothers and teachers, and the lowest quality relationships with teachers. Significant differences found among the disorganized/controlling subtypes indicated that the behaviorally disorganized and controlling-punitive subtypes had more maladaptive patterns across variables than did the controlling-caregiving and controlling-mixed subtypes.
Risperidone in children with autism and serious behavioral problems.
McCracken JT, McGough J, Shah B, Cronin P, Hong D, Aman MG.
(2002)
Autism, a chronic condition that develops in early childhood, is characterized by a marked impairment in the ability to relate to others, delayed language, and restricted patterns of behavior. The disorder affects as many as 20 children per 10,000.1
In addition to core symptoms, children with autism frequently have serious behavioral disturbances, such as self-injurious behavior, aggression, and tantrums in response to routine environmental demands.2 These behavioral problems interfere with rehabilitative efforts and pose enormous challenges to parents and educators. Although behavior therapy may reduce aggression and self-injury, it tends to be highly individualized and has not been evaluated in randomized clinical trials.3 Attempts to treat autism with several medications in various chemical classes have had limited success.4 To date, only haloperidol, a potent postsynaptic dopamine-receptor antagonist, has been shown in more than one study to be superior to placebo for the treatment of serious behavioral problems.5,6 However, many clinicians avoid using haloperidol in children because of concern about its short- and long-term side effects.7
Unlike haloperidol, atypical antipsychotic agents block postsynaptic serotonin receptors. The affinity of these agents for serotonin receptors may enhance their efficacy and provide protection against extrapyramidal symptoms.8 Alternatively, atypical antipsychotic agents may be more easily displaced by endogenous dopamine, which reduces the risk of neurologic side effects.9 Given the lower frequency of extrapyramidal symptoms with atypical antipsychotic agents and their reported efficacy for treating both positive and negative symptoms in adults with schizophrenia, there is great interest in the question of whether these agents are beneficial in children with developmental disorders.10 To date, only one placebo-controlled study of risperidone in adults with autism and a handful of open-label studies in children with pervasive developmental disorders have been reported.11-13 We conducted a multisite study to evaluate the efficacy and safety of risperidone in children with autism accompanied by serious behavioral disturbances.
METHODS
Subjects
The first phase of the study was an eight-week, double-blind, randomized, placebo-controlled trial of risperidone (Risperdal, Janssen) conducted by the Autism Network of the Research Units on Pediatric Psychopharmacology between June 1999 and April 2001. At the end of the double-blind phase, children in the placebo group who had had no improvement in their behavior were offered open-label treatment with risperidone, as were children in the risperidone group who met the predetermined criteria for a positive response. Open-label treatment was given for four months, followed by a two-month, placebo-controlled discontinuation phase, as described elsewhere.14 The study sites included the University of California at Los Angeles, Ohio State University, Indiana University, Yale University, and the Kennedy Krieger Institute at Johns Hopkins University. The protocol was approved by the institutional review board at each site, and written informed consent was obtained from a parent or guardian before enrollment. Safety and adherence to the protocol were monitored through weekly conference calls, annual site visits by investigators at the coordinating center (Yale University), and quarterly reviews by the data and safety monitoring board convened by the National Institute of Mental Health.
All children met the criteria for autistic disorder described in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition,15 with tantrums, aggression, self-injurious behavior, or a combination of these problems. Other enrollment criteria included an age of 5 to 17 years, a weight of at least 15 kg, and a mental age of at least 18 months. The children had to be free of serious medical disorders and of other psychiatric disorders requiring medication. We reviewed each child's past and current treatments for autism. In consultation with parents, children receiving a psychotropic drug that was deemed effective for the treatment of aggression, tantrums, or self-injurious behavior were excluded. Ineffective medications were gradually withdrawn, and a drug-free interval of 7 to 28 days, depending on the drug, was required before enrollment. Treatment with an anticonvulsant agent for seizure control was allowed if the dose had been unchanged for at least four weeks and if there had been no seizures for at least six months.
Base-Line Assessment and Outcome Measures
The diagnosis of autistic disorder was corroborated by the Autism Diagnostic Interview — Revised. This semistructured interview was administered by a clinician with special training and systematic review to ensure reliability.16 Screening also included intelligence testing; administration of the Vineland Adaptive Behavior Scales (the population mean [±SD] for each scale is 100±15; higher scores indicate more adaptive behavior)17; routine laboratory tests; electrocardiography; measurement of height, weight, and vital signs; medical history taking; and physical examination. The child's race was reported by the parent or primary caretaker. Clinically significant behavioral problems were defined by a rating of moderate or higher on the Clinical Global Impressions — Severity (CGI-S) scale, as determined by a clinician,18 and by a score of 18 or higher on the Irritability subscale of the Aberrant Behavior Checklist, as rated by the parent (or primary caretaker) and confirmed by a clinician. The 15-item Irritability subscale includes questions about aggression, self-injury, tantrums, agitation, and unstable mood on a scale of 0 to 45, with higher scores indicating greater severity. Data from studies of developmentally disabled children indicate that a score of 18 is 1.3 to 1.5 SD above the population mean, depending on the age and sex of the child.19,20 To exclude children whose symptoms might improve in response to nonspecific clinical contact, the children were reassessed at base line, 7 to 14 days after the initial assessment. Only children who met the inclusion criteria for the CGI-S scale (according to an experienced clinician) and the score on the Irritability subscale (based on the parent's or primary caretaker's rating) at base line as well as at the time of screening were eligible for randomization. The Irritability scores obtained at this second evaluation were used as base-line values.
Each child was seen weekly by two clinicians who were unaware of the treatment assignment: a primary clinician, who reviewed side effects and adjusted the dose of medication, and a clinical evaluator, who assessed the response to treatment. The primary outcome measures were the score at eight weeks on the Irritability subscale of the Aberrant Behavior Checklist, based on the parent's or primary caretaker's rating, and the rating on the Clinical Global Impressions — Improvement (CGI-I) scale, as determined by the clinical evaluator. Children who had at least a 25 percent reduction in the Irritability score and a rating of much improved or very much improved on the CGI-I scale were considered to have a positive response.
Other outcomes were scores on the other subscales of the Aberrant Behavior Checklist (Social Withdrawal, Stereotypy, Hyperactivity, and Inappropriate Speech), based on ratings by the parent or primary caretaker. At base line, the parent or primary caretaker was interviewed to identify the target symptoms and to rate compulsive behavior according to the Children's Yale–Brown Obsessive Compulsive Scale. These semistructured interviews were used in determining the score on the CGI-I scale at subsequent visits, as described in detail elsewhere.21
Medication Schedule
For children who weighed 20 to 45 kg, risperidone was given at an initial dose of 0.5 mg at bedtime and was increased to 0.5 mg twice daily on day 4. The dose was gradually increased in 0.5-mg increments to a maximum of 2.5 mg per day (1.0 mg in the morning and 1.5 mg at bedtime) by day 29. A slightly accelerated dose schedule was used for children who weighed more than 45 kg, with a maximal dose of 1.5 mg in the morning and 2.0 mg at bedtime. For children who weighed less than 20 kg, the initial dose was 0.25 mg per day. Scheduled dose increases could be delayed because of adverse effects or because of marked improvement at a lower dose. Dose reductions to manage side effects were allowed at any time, but there were no dose increases after day 29.
Monitoring for Safety
Laboratory tests, electrocardiographic studies, and physical examination were repeated at eight weeks; weight and vital signs were assessed weekly. At each visit, the primary clinician inquired about health problems, intercurrent illness, and concomitant medications and administered a 32-item questionnaire concerning energy level, muscle stiffness, motor restlessness, bowel and bladder habits, sleep, and appetite. Neurologic side effects were assessed weekly with the use of the Simpson–Angus scale22 and the Abnormal Involuntary Movement Scale.18 Adverse events noted as a result of any of these methods were documented with respect to severity, duration, management, and outcome.
Statistical Analysis
Data were analyzed according to the intention-to-treat principle. Statistical tests were two-tailed. P values of 0.05 or less were considered to indicate statistical significance, except for the analysis of adverse events (P<0.10) and analyses adjusted for multiple comparisons (the Bonferroni method). The biweekly scores on the Irritability subscale were analyzed with the use of mixed-effects linear models in which the study group and site were the fixed effects and the outcome and time were the random effects.23 The mixed-effects approach makes full use of available data and allowed us to combine subject-specific scores on the Irritability subscale in order to estimate the slope of the regression line for each group over time. A strong downward trend in Irritability scores in the risperidone group, as compared with the placebo group, would indicate a statistically significant interaction between treatment and time. Interactions with the site that were not significant were removed from the final model. The parameters of the mixed-effects model were estimated with the use of SAS Proc Mixed software.24
To compare our results with those of other trials and to estimate the likelihood of a response to risperidone in other patients with similar problems, we conducted two additional analyses. First, using our previously stated definition of a treatment response, we compared the rate of positive responses in each study group with the use of the chi-square test. Second, we calculated the size of the effect (the change from base line at eight weeks) for each scale of the Aberrant Behavior Checklist.
Differences in adverse events were tested by the chi-square test or Fisher's exact test when subgroups contained fewer than five children. Continuous variables were assessed with the use of the regression model described above.
RESULTS
Base-Line Characteristics
Of the 270 children who were screened for the study, 112 did not meet the criteria for enrollment, the parents or guardians of 57 children declined participation. The remaining 101 children (82 boys and 19 girls) were enrolled and randomly assigned to receive risperidone (49 children) or placebo (52). We subsequently identified four children who did not meet the entry criteria because their Irritability subscale had fallen below the threshold of 18 at base line. An analysis of the Irritability data that excluded these four children had results that were virtually identical to those with the full sample. Thus, the intention-to-treat analysis included all 101 children.
The children ranged in age from 5 to 17 years (mean [±SD], 8.8±2.7); 87 percent (88 children) were prepubertal; 66 percent (67) were white, 11 percent (11) were black, 7 percent (7) were Hispanic, 8 percent (8) were Asian, and 8 percent (8) were members of other racial or ethnic groups; and 91 percent (92) lived at home with at least one parent. The two groups were similar at base line with respect to a range of demographic, developmental, and clinical characteristics, including mean scores on the Aberrant Behavior Checklist subscales, with the exception of the score on the Inappropriate-Speech subscale, which was higher in the placebo group than in the risperidone group
Primary Outcome
Analysis of the scores on the Irritability subscale revealed a significant interaction between the study group and time (P<0.001) (Figure 1FIGURE 1
Mean Scores for Irritability in the Risperidone and Placebo Groups during the Eight-Week Trial.
). After eight weeks of treatment, the risperidone group had a 56.9 percent decrease in the mean Irritability score (from 26.2±7.9 at base line to 11.3±7.4 at eight weeks), as compared with a 14.1 percent decrease in the placebo group (from 25.5±6.6 to 21.9±9.5, P<0.001) (Table 2TABLE 2
Scores on the Aberrant Behavior Checklist at Base Line and Eight Weeks.
). The rate of a positive response (at least a 25 percent improvement in the score on the Irritability subscale and a rating of much improved or very much improved on the CGI-I scale) was 69 percent in the risperidone group (34 of the 49 children had a positive response) and 12 percent in the placebo group (6 of 52, P<0.001).
These gains in the risperidone group were maintained for six months in 23 of the 34 children (68 percent) who had had positive responses in the double-blind phase of the study. Of the other 11 children who had positive responses with risperidone, 2 did not enter the extension phase of the study because the family moved and 2 because the parents decided to evaluate the children's behavior in the absence of medication. During the extension phase, the parents of two children decided to seek other treatment in addition to risperidone; four children were withdrawn because the treatment was no longer effective, and one child was withdrawn because of an unrelated medical problem.
Secondary Outcomes
Table 2 shows the mean base-line and end-point scores, as well as the effect size, for all the subscales of the Aberrant Behavior Checklist in each study group. After correction for multiple comparisons, there was a significant interaction between the study group and time for scores on the Stereotypy and Hyperactivity subscales, suggesting that risperidone improved behavior in these areas as well. Scores for Social Withdrawal and Inappropriate Speech did not differ significantly between the two groups (after Bonferroni correction).
The rate of improvement over time is shown in Figure 2FIGURE 2
Percentage of Children with a Rating of Much Improved or Very Much Improved on the Clinical Global Impressions — Improvement Scale during the Eight-Week Trial.
. The proportion of children whose behavior was rated as much improved or very much improved on the CGI-I scale differed by 44 percent between the study groups at week 4 (P<0.001) and by 64 percent at week 8 (P<0.001).
Medication Dose
The mean daily dose of risperidone during the final week of the study was 1.8±0.7 mg (range, 0.5 to 3.5). The mean dose of placebo dispensed was equivalent to 2.4±0.6 mg per day (range, 1.0 to 3.5; P<0.001).
Adverse Events
There was a significantly greater mean increase in weight in the risperidone group (2.7±2.9 kg) than in the placebo group (0.8±2.2 kg, P<0.001) (Table 3TABLE 3
Adverse Events Reported during the Eight-Week Trial.
). The weight gain in the risperidone group was associated with a mild increase in appetite (in 49 percent of children) or a moderate increase in appetite (in 24 percent), as reported by the parent or primary caretaker (P=0.03 and P=0.01, respectively, for the comparison with the placebo group).
Sixty different adverse events were recorded during the trial, 29 of which occurred in 5 percent or more of the children (Table 3). There were no serious adverse events in the risperidone group, and no children were withdrawn from the study because of an adverse event. Most adverse events were mild and self-limited. For example, 23 children (47 percent) in the risperidone group had mild fatigue, but only 6 (12 percent) had moderate fatigue. In most cases, the fatigue had subsided by week 6. Similarly, of the 24 children in the risperidone group described as drowsy by their parents or primary caretakers, 16 were considered to be mildly drowsy, and they were no longer drowsy by week 4.
Weekly assessment with the Abnormal Involuntary Movement Scale and the Simpson–Angus scale showed no extrapyramidal symptoms in either group. Parents or caretakers reported five neurologic side effects: tremor, dyskinesia, rigidity, akathisia, and difficulty swallowing. Of these, tremor was significantly more common in the risperidone group (P=0.06). One child in each group had a value for serum glutamic-oxaloacetic transaminase that was more than twice the upper limit of the normal range at eight weeks, and one child in the placebo group had an elevated serum glutamic-pyruvic transaminase level. One child in the placebo group had a nonspecific, clinically insignificant change in cardiac conduction. The pulse, blood pressure, and results of routine laboratory tests did not differ significantly between the two groups. Eighteen children (8 in the risperidone group and 10 in the placebo group) had fever in association with a documented, time-limited illness.
Withdrawal from the Study
Three children in the risperidone group were withdrawn from the study because the treatment was not effective. One child in the placebo group was withdrawn because of a severe headache and a seizure attributed to the failure of a ventriculoatrial shunt. An additional 17 children in the placebo group did not complete the study for the following reasons: withdrawal of consent (1 child), nonadherence (1), loss to follow-up (3), and lack of efficacy (12). The rate of withdrawal was 35 percent (18 of 52 children) in the placebo group, as compared with 6 percent (3 of 49) in the risperidone group (P=0.001).
DISCUSSION
In this trial, risperidone was safe and effective for the short-term treatment of tantrums, aggression, and self-injurious behavior in children with autistic disorder. Improvements were also observed in stereotypic behavior and hyperactivity. Scores on the Social Withdrawal subscale, which rates social isolation and interest in communicating with others, did not differ significantly between the risperidone and placebo groups. Adverse effects such as weight gain, increased appetite, fatigue, drowsiness, dizziness, drooling, tremor, and constipation were more common in the risperidone group. Most of these adverse effects were mild and resolved within a few weeks. Thus, the risk–benefit ratio for risperidone therapy appears to be favorable.
Our findings confirm the results of small, open-label trials of risperidone in children with autism or another pervasive developmental disorder.4 The benefits of risperidone in our study exceeded the improvements observed in a recent controlled study involving 38 adolescents with mental retardation and explosive behavior.25 In our study, there was a difference of 43 percentage points between the risperidone and placebo groups in the change from the base-line score on the Irritability subscale, whereas studies of haloperidol for the treatment of autism showed a difference of 15 to 20 percent between the placebo and active-treatment groups, depending on the measure.5 Our findings with respect to the rate and severity of adverse effects also differ from previous findings. Excessive sedation was reported in 78 percent of children who received haloperidol,6 as compared with generally mild sedation in 59 percent of the children in our study who received risperidone. An acute dystonic reaction occurred in 25 percent of haloperidol-treated patients6 but in none of the children in our trial who received risperidone. Although parents or primary caretakers reported tremor in a few of the children treated with risperidone, weekly neurologic assessments showed no abnormalities. The low risk of extrapyramidal symptoms in our study is consistent with the results of studies in adults.8 Nonetheless, the adverse events observed in our study and the lack of a clear benefit with regard to core symptoms of autism indicate that risperidone should be reserved for treatment of moderate-to-severe behavioral problems associated with autism.
There are several limitations to this study. First, the observation period was only eight weeks long. However, a majority of the children who were classified as having a positive response during the double-blind phase of the study (23 of 34) continued to show benefit at six months. Second, the study included only children with autistic disorder. It is not clear whether our findings can be generalized to children with other forms of pervasive developmental disorder. Third, although the mean doses of risperidone used in this study were not high, the study could not identify the minimal effective dose. Finally, we focused on specific behavioral problems rather than on the core symptoms of autism. Indeed, when designing the study, we were unable to identify a validated measure for the core symptoms of autism that was suitable for repeated administration. Our focus on severe behavioral problems leaves unanswered the question of whether pharmacologic therapy and behavioral treatment could have additive effects.
Ro utan åror. En bok om livet och döden
Lindguist, Ulla-Karin
(2004)
Samma dag som hon skulle fira sin 50-årsdag fick TV-journalisten Ulla-Carin Lindquist sin diagnos. De problem hon haft med först sin högra hand, sen sitt ben och sen med allt fler muskler berodde på att hon drabbats av amyotrofisk lateralskleros, ALS. Det är den värsta av alla neurologiska sjukdomar. Den saknar bot och leder snabbt till döden. Den här boken är skriven under den korta sjukdomstiden.
Ulla-Carin Lindquist skildrar sina upplevelser ställd ansikte mot ansikte med döden. Men det är också en bok om kärlek och en djup förbundenhet med allt levande.
Role perceptions of occupational therapists providing support and education for caregivers of persons with dementia
Toth-Cohen, S.
(2000)
Rullstolsmobility. Ett samverkansprojekt där målet är att säkra barn och ungdomars aktivitet, delaktighet och involvering i livssituationer.
SPSM
(2011)
Rättigheter & möjligheter – en guide till samhällsstöd för barn och ungdomar med funktionshinder och deras familjer
Ingmanson, Anna
(2003)
Rättigheter och barnperspektiv (filmad föreläsning). Livets möjligheter - för personer med flerfunktionsnedsättning, deras anhöriga och omgivning
Wiestål C, editor
(2014)
Samarbeid i Laerings- og mestringssenteret – brukermedvirkning og makt
Strøm, Anita
(2010)
Samarbete med behoven i centrum : de olika vårdinstanserna kan göra rätt, var och en för sig ; ändå är vården och omsorgen till de mest behövande ofta bristfällig ; utredare Ulla Gurner pekar på en rad orsaker ; tema: lust till kunskap.
Raune, I.
(2007)
Samhällets stöd till människor med funktionshinder
Direktiv
(1998)
Som förälder till barn med funktionsnedsättning har man laglig rätt till stöd från samhället. De flesta insatser måste man söka själv och därför är det bra att känna till vilken typ av hjälp man har rätt till.
Samhällets stöd till människor med funktionshinder
Direktiv (1988:53).
(1998)
Samhällets stöd till människor med funktionshinder.
Kommittédirektiv (1988:53)
(1988)
Parent-child interaction: A comparison of parents' perceptions in three groups
Wilder J, Axelsson C, Granlund M.
(2004)
Purpose: To evaluate a children's version of the ICF that takes children's dependency on their parents and a developmental perspective into consideration. Method: This study explored how 91 parents perceived child participation in terms of parent/child immediate interaction, and desires for ideal interaction in relation to body impairments and activity limitations. Similarities and differences were investigated in three matched groups of families through questionnaires. Group 1 consisted of parents of children with profound multiple disabilities, Group 2 was developmentally matched and Group 3 was matched according to chronological age. Results: The children with profound multiple disabilities expressed the same amount of emotions as the other groups, but they had difficulties expressing more complex emotions. Parents perceived the children's behaviour styles in a similar way in the three groups. There were significant differences in how the immediate interaction was perceived with parents to children of Group 1 perceiving difficulties in maintaining joint attention and directing attention. Conclusions: The results suggest that parental perceptions of the interaction with their children with profound multiple disabilities in the immediate setting to a certain extent are related to the body impairments of the children but not strongly to communicative skills /activity limitations. Thus, to focus communication intervention on participation and interaction, assessment and questions to parents have to be focused directly on these issues. © 2004 Taylor & Francis Ltd.
Parenting in Recovery Program: Participant Responses and Case Examples.
Thompson S, Roper C, Peveto L.
(2013)
Approximately 80% of children served by child welfare agencies have parents who abuse or are dependent on alcohol or illicit drugs. Despite the devastating effects on children from living in substance abusing families, child protective service practitioners have limited options available to assist these families. The Parenting in Recovery program was created to address the needs of substance-abusing mothers involved in child welfare. This manuscript describes this program and perceptions of participants concerning its effectiveness.
Parenting is a mental health issue
Fudge, E., Falkov, A., Kowalenko,N., & Robinson,P.
(2004)
Objective: Increasing numbers of adults with a psychiatric disorder are also parents of dependent children. The present article aims to outline ways in which Fellows of the Royal Australian and New Zealand College of Psychiatrists (RANZCP) can assist in enhancing psychiatric care when a person with a mental illness also has parenting responsibilities.
Methods: The national Children of Parents With A Mental Illness (COPMI) initiative undertook consultations with consumers, carers, young people and a range of professionals to assist in development of documents and resource materials to enhance policy and practice. Communication and interaction with key psychiatrists' professional bodies to seek their advice and participation has been maintained throughout the project.
Results: The RANZCP Fellows have assisted the COPMI project in the development and dissemination of draft principles and recommended actions for services and people working with children of parents with a mental illness and their families, and in the development of associated resource materials. They are now considering a College position statement on this issue.
Conclusions: If children of parents with a mental illness are to benefit from proposed enhancements to practice relating to services provided to their families, it is essential that psychiatrists themselves are involved in the development, implementation and review of good practice in this area.
Parenting Matters: What works in parenting education
Lloyd, Eva
(1999)
Parenting of children with Attention-Deficit/Hyperactivity Disorder (ADHD): The role of parental ADHD symptomatology
Harvey, E., Danforth, J. S., Eberhardt McKee, T., Ulaszek, W. R., & Friedman, J. L.
(2003)
OBJECTIVE:
The present study examined the relation between parental ADHD symptomatology and parent-child behavior among 46 mothers and 26 fathers of ADHD children.
RESULTS:
Fathers' self-reports of inattention and impulsivity were strongly associated with self-reports of lax parenting both before and after parent training, and with self-reports of overreactivity after parent training. Fathers' impulsivity was also associated with more arguing during audiotaped observations of parent-child interactions prior to parent training. Mothers' self-reports of inattention were modestly associated with self-reports of laxness before and after parent training. Prior to parent training, there were non-linear relations between mothers' inattention and observations of mother-child behavior, with mothers who reported moderate levels of inattention engaging in the most negative parent-child interactions. After parent training, these relations were linear, with the mothers who reported the most inattention engaging in the most negative parent-child interactions. These results were weakened but were generally still significant when parental depression and alcohol use were controlled.
Parenting stress and ADHD: A comparison of mothers and fathers.
Baker, David
(1994)
Parenting stress experiences in families who have children with Attention-deficit Hyperactivity Disorder (ADHD) are receiving increased attention in the research literature on ADHD. In studies to date, evaluations of parenting stress have relied almost exclusively on maternal reports. This study compared reports of parenting stress between mothers and fathers in 20 sets of parents of children with ADHD. Results showed little difference between maternal and paternal reports of parenting stress in such families. Child behavior, socioeconomic status, and years married contributed more to parenting stress than did parent gender
Samtal i självhjälpsgrupp – få kraft och stöd av andra i samma situation.
Essén, Charlotte
(2003)
Känslan av total isolering i en krissituation kan ibland vara lika förödande som själva orsaken till krisen. Den som själv är drabbad eller har varit i samma situation kan bättre förstå hur det känns- det är grundtanken bakom fenomenet självhjälpsgrupper.
Journalisten Charlotte Essén har i sin bok samlat en mängd fakta kring självhjälpsgrupper: varför de behövs, hur de har utvecklats, hur de fungerar etc. Hon har även sammanställt en utförlig lista- den första i sitt slag- över alla de grupper som finns i Sverige idag, sorterade under ämnesrubriker, vilket gör boken till en användbar handbok för den som söker hjälp eller vill starta en ny grupp.
Samtal med barn och ungdomar. Erfarenheter från arbetet på BRIS
Iwarsson, Petter
(2007)
En bok om samtalsmetodik för dig som möter barn och ungdomar i sammanhang där man pratar om viktiga saker i livet. Erfarenheter från arbetet på BRIS är utgångspunkt för boken men innehållet kan generaliseras till samtal inom nästan vilket sammanhang som helst.
Som läsare får man konkreta verktyg, ett förhållningssätt, för samtal med barn och ungdomar. Boken ger också reflektioner och en fördjupad insikt om vad samtal med barn är och gör med oss själva. En röd tråd i boken är hur vi kan omsätta de salutogena begreppen begriplighet, hanterbarhet och meningsfullhet i samtal med barn.
Samtal med barn och ungdomar: erfarenheter från arbetet på BRIS
Iwarsson, P.
(2007)
En bok om samtalsmetodik för dig som möter barn och ungdomar i sammanhang där man pratar om viktiga saker i livet. Författaren lyfter fram teman i samtalet som kan hjälpa barn att skapa begriplighet, hanterbarhet och meningsfullhet i sin vardag. Som läsare får du konkreta verktyg för samtalet och ett användbart förhållningssätt. Boken ger också en fördjupad insikt om vad samtal med barn är och gör med oss själva. Innehållet är allmängiltigt och går att använda i alla sammanhang där man möter barn och ungdomar.
Parents with learning difficulties in the child protection system: experiences and perspectives
Booth, T., & Booth, W.
(2005)
The article documents the views and feelings of parents with learning difficulties as they reflect on their first-hand experience of going through care proceedings. Drawing on interviews conducted as part of a wider study of how cases involving mothers and fathers with learning difficulties are handled by the child protection system and the family courts, the authors provide a parental perspective on assessments, support, case conferences and the court process as well as the after-effects on the families themselves.
Samtal pågår
Wächter, A.
(2010)
Samtal som familjestödjande praktik: barn som anhöriga när föräldrar har psykiska problem
Bulow Pia, Thunqvist Persson, Daniel, Cedersund Elisabet
(2017)
Rapporten redovisar resultatet av en forskningsstudie om familjestödjande samtal med barn och föräldrar i familjer där mamma och/eller pappa har psykiska problem som föranleder kontakt med vuxenpsykiatrin. Det studerade familjestödet bygger på ett utvecklat samarbete mellan en landstingsdriven vuxenpsykiatrisk mottagning och en familjeenhet inom socialtjänsten i en medelstor kommun i Mellansverige. Den del av familjestödet som har studerats är den serie samtal som erbjuds genom familjeenheten och som genomförs där.
Studiens övergripande syfte var att undersöka hur familjestödjande samtal fungerar och organiseras i samspel mellan barn, föräldrar och professionella. Mer specifikt avsåg studien belysa om och hur barn genom dessa samtal får stöd att prata om föräldrars psykiska problem samt huruvida och på vilket sätt familjestödet kan bistå föräldrarna i deras föräldraskap.
Inom ramen för forskningsstudien samlades data in från 21 familjestödssamtal samt intervjuer med sju föräldrar och fyra barn efter avslutat familjestöd. Dessutom genomfördes sju intervjuer med samtalsledarna som medverkat vid de studerade familjestödssamtalen. Tre familjer följdes genom hela samtalsserien som för dessa familjer omfattade mellan sex och åtta samtal. Samtliga familjestödssamtal spelades in med ljud och bild medan enbart ljud gällde för intervjuerna.
Familjestödssamtalen analyserades med samtalsanalytiska och narrativa metoder. Viktiga teoretiska utgångspunkter var det som brukar kallas institutionella samtal och teorier om socialt samspel i interaktion. Av betydelse var också tidigare forskning om barnsamtal och familje-samtal som kommunikativ praktik och i institutionella kontexter t.ex. familjeterapi, samt internationella och nationella studier om familjestödjande interventioner av typen Beardslees preventiva familjeinterventionoch den finska kortversionen Föra barnen på tal
Samtal som verktyg. En introduktion i samtalsteknik
Zimsen, K.
(2007)
Samtalet med känslomässig intelligens. En handledning i konsten att samtala
Hilmarsson, H., Th.
(2010)
Samtalets betydelse
Svensson J-O.
(2013)
Detta inspirationsmaterial om samtalets betydelse som anhörigstöd bygger på det material som kommit fram i två blandade lärande nätverks diskussioner och dokumentation under åren 2011 till 2013. Sammanlagt genomfördes sex träffar i respektive nätverk. Ur sammanställningarna, har olika teman och frågeställningar identifierats. Dessa teman utgör rubrikerna i detta inspirationsmaterial.
Samtalets betydelse som anhörigstöd
Winqvist Marianne
(2011)
Samtal utgör en väsentlig del av kommunernas anhörigstöd och är också avgörande för anhörigas kontakter med professionella inom vård- och omsorgsverksamheter. I rapporten presenteras bland annat forskning om anhörigas behov av samtal som stöd i allmänhet samt i mötet med vård och omsorg
Samtalskonst. Palliativ medicin.
Birgegård, G.
(2004)
Samverkan i barnavårdsarbetet: En utvärdering av Centrum för samverkan i Flemingsberg
Pettersson, Ulla
(1999)
Samverkan i Södertälje för en god äldrevård : tema: närvård
Nydevik, I.
(2007)
Samverkan kring barn i behov av särskilt stöd (BUS).
Stockholms läns landsting och kommuner i Stockholms län
(2012)
Samverkan kring föräldrar med utvecklingsstörning eller andra intellektuella begränsningar. Kartläggning av stödbehov som grund för metodutveckling och uppbyggnad av kunskapscentrum
Olson, Lena & Springer, Lydia
(2003)
Samverkan kring gravida med missbruksproblem: En studie av Mödra-Barnhälsovårdsteamet i Haga. Nka Barn som anhöriga 2016:2
Heimdahl Karin, Karlsson Patrik
(2016)
Studie med syfte att belysa arbetet vid Mödra- och barnhälsovårdsteamet i Haga, som är en vårdenhet specialiserad på gravida kvinnor och nyblivna föräldrar med missbruksproblem samt deras barn. Intresset riktades mot hur arbetet på mottagningen var upplagt, kännetecken hos patientgruppen samt hur och i vilken mån samverkan med andra verksamheters bedrevs. De huvudsakliga resultaten visade att det i patientgruppen fanns en relativt stor variation med avseende på sådant som boendesituation, civilstånd och sysselsättning. Denna rapport kommer endast att vara tillgänglig som pdf.
Samverkan mellan kommuner och landsting inom vård- och omsorgsområdet
Proposition (2002/03:20).
(2002)
Behovet av samverkan mellan kommuner och landsting har blivit allt tydligare. Ur den enskildes perspektiv är det viktigt att metoder för samordnad planering utvecklas samt att en god kvalitet säkerställs. Verksamheter har också utvecklats med utgångspunkt från brukarnas samlade behov. Med denna proposition vill regeringen stödja och stimulera en fortsatt kvalitetsutveckling av samverkan på vård- och omsorgsområdet. Inriktningen är att utöka landstingens och kommunernas befogenheter att utforma arbetet utifrån de lokala förutsättningarna. Kommuner och landsting skall därför genom en ny lag ges möjlighet att samverka i en gemensam nämnd för att gemensamt fullgöra uppgifter inom vård- och omsorgsområdet. Lagändringarna föreslås träda i kraft den 1 juli 2003.
Participation in everyday occupations and life satisfaction in the stroke-caregiver dyad [Elektronisk resurs].
Bergström, A. L.
(2012)
In order to develop knowledge that can be used within rehabilitation after stroke, the general aim was to explore participation in everyday occupations and the relation to life satisfaction in persons with stroke and within the caregiver dyad. Furthermore, the aim was to understand and describe the lived experience of persons enacting agency in everyday occupations during the first year after stroke. The aim of study I was to understand the lived experience of enacting agency (i.e. making things happen by ones' actions in everyday life) and to describe the phenomenon of agency during the year after stroke. This was done with a phenomenological approach. Studies I and II had a prospective, longitudinal design and the aim of study II was to explore the extent of and the factors associated with restrictions in participation in everyday occupations i.e. occupational gaps, 12 months after stroke and to identify factors at 3 months that predicted occupational gaps 12 months after stroke. Studies III-IV used a cross-sectional design and study III described the combined life satisfaction of the stroke-caregiver dyad and investigated the association of the combined life satisfaction with the perceived impact of the stroke and the caregivers' caregiver burden one year after stroke. The aim of study IV was to explore and describe persons' with stroke and their caregivers' restrictions in participation in everyday occupations three months after study inclusion and to depict this in relation to their life satisfaction, the dyads combined life satisfaction, caregiver burden, perceived impact of stroke and ADL ability. The findings in study I showed that persons after a stroke experienced the process of enacting agency as complex negotiations of varied and changing aspects in different situations. The four characteristics that described how the participants enacted agency concerned how they managed their perturbed bodies, took into account the past and envisioned the future, dealt with the world outside themselves, and negotiated through internal dialogues. Restrictions in participation i.e. occupational gaps, were perceived by 83% of persons with stroke and almost half of the caregivers, three months after study inclusion (study IV), and 45% of the persons with stroke, one year after the incident (study II). Three months after stroke, ADL ability, social participation and not being born in Sweden predicted occupational gaps at 12 months (study II). Occupational gaps were associated with life satisfaction one year after stroke (study II) but there was a low correlation between the number of occupational gaps for the persons with stroke and their life satisfaction, 3 months after study inclusion. This also regarded the caregivers (study IV). Almost two-thirds of the stroke-caregiver dyads gave congruent responses regarding their global life satisfaction. Dyads, where both persons had a low life satisfaction; 26% and 38%, respectively (studies III-IV), experienced caregiver burden, stroke impact, and occupational gaps to a greater extent, compared with those dyads where both persons were satisfied (study III-IV). Persons use complex negotiations to participate in everyday occupations after stroke and may need client-centered support. Their process of enacting agency challenges existing definitions of agency. Also, determining predictors of occupational gaps may facilitate identification of persons risking participation restrictions. A dyadic perspective regarding life satisfaction and life after stroke can provide information about potential vulnerable persons or dyads. This knowledge can be used clinically to prevent restrictions in participation in everyday occupations for both individuals and dyads affected by stroke.
Participation in leisure actviities of children and youths with and without disabilities
Ullenhag A.
(2012)
The World Health Organization (WHO) defines participation as a person's involvement in a life situation, and to participate in leisure activities is one of the most important aspects of health and well-being. When a child is involved and engaged in a leisure activity, it gives the child a sense of belonging, opportunities to make friendships, and possibilities to develop physical and social competences and skills. Children with disabilities tend to be restricted in their abilities to participate in leisure activities due to mobility problems, communication disorders, and pain, but also as a result of negative attitudes from others and problems with transportation and accessibility.
Knowledge of the personal and environmental factors that facilitate or hinder participation in leisure activities for children with disabilities is essential to be able to implement successful interventions with the aim of increasing participation. This requires a valid assessment of participation that can give both an objective and subjective view of the multidimensional construct.
The overall aim of this doctoral thesis is to describe and compare patterns of participation in leisure activities of children with and without disabilities by cultural validation and use of the Children's Assessment of Participation and Enjoyment/Preferences for Activities of Children (CAPE/PAC) in the Swedish context. A specific goal is to develop and implement a client-centred model of intervention with the aim of improving participation in leisure activities by children with disabilities.
The result from Study I showed that the slightly modified Swedish version of the CAPE was valid for Swedish children. The outcome of standardized mean diversity score was significantly higher compared with the outcome of the original version of the CAPE, indicating that validation of the item relevance in the new context was necessary. The overall findings in Study II indicated that Swedish children with disabilities participated in a higher diversity of leisure activities, but with less intensity, compared to children without disabilities. Study III showed that there are differences between countries in patterns of participation in leisure activities for children with disabilities in regards to both diversity and intensity. For children without disabilities there were only minor differences between the countries. The results of Study IV showed that a designed intervention approach could be applied in the clinic for increasing participation in leisure activities by children with neuropsychiatric diagnosis.
The overall clinical implications and conclusions from this thesis are three-fold. First, a cultural validation of the CAPE/PAC is necessary when surveying Swedish children's participation in leisure activities. Second, the patterns of participation in leisure activities of children with and without disabilities differ both nationally and internationally, and this provide evidence of the need for changes in national legislations, policies, and therapeutic approaches that promote participation of children with disabilities. Third, an intervention model with a client-centred approach in which children with disabilities define their own leisure activity goals by using the CAPE and PAC appears to be effective in increasing participation in leisure activities.
List of papers:
I. Ullenhag A, Almqvist L, Granlund M, Krumlinde-Sundholm L. Cultural validity of the Children's Assessment of Participation and Enjoyment/Preferences for Activities of Children. Scandinavian Journal of Occupational Therapy. 2012; 19 (5): 428-38.
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II. Ullenhag A, Krumlinde-Sundholm L, Granlund M, Almqvist L. Differences in patterns of participation in leisure activities in Swedish children with and without disabilities {Submitted}
III. Ullenhag A, Bult M.K, Nyquist A, Ketelaar M, Jahnsen R, Krumlinde- Sundholm L ,Almqvist L, Granlund M. An international comparison of patterns of participation in leisure activities for children with and without disabilities in Sweden, Norway and the Netherlands. Developmental Neurorehabilitation, 2012; 15 (5): 369-85.
Fulltext (DOI)
Pubmed
Satisfied carers of persons with enduring mental illness: who and why?
Kartalova-O'Doherty, Y., & Doherty, D. T.
(2009)
Satsa på anhörigvårdare : att vara anhörigvårdare är vanligast i åldrarna 75-84 år
Larsson, M & Wallin, G.
(2009)
Saving children from a life of crime. Early risk factors and effective intervention
Farrington DP, Welsh BC.
(2007)
After decades of rigorous study in the United States and across the Western world, a great deal is known about the early risk factors for offending. High impulsiveness, low attainment, criminal parents, parental conflict, and growing up in a deprived, high-crime neighborhood are among the most important factors. There is also a growing body of high quality scientific evidence on the effectiveness of early prevention programs designed to prevent children from embarking on a life of crime.
Drawing on the latest evidence, Saving Children from a Life of Crime is the first book to assess the early causes of offending and what works best to prevent it. Preschool intellectual enrichment, child skills training, parent management training, and home visiting programs are among the most effective early prevention programs. Criminologists David Farrington and Brandon Welsh also outline a policy strategy - early prevention - that uses this current research knowledge and brings into sharper focus what America's national crime fighting priority ought to be.
At a time when unacceptable crime levels in America, rising criminal justice costs, and a punitive crime policy have spurred a growing interest in the early prevention of delinquency, Farrington and Welsh here lay the groundwork for change with a comprehensive national prevention strategy to save children from a life of crime.
Scaling and attainment of goals in family-focused intervention
Simeonsson, Rune J, Bailey, Donald B, Huntington, Gail S, Brandon, Lori l
(1991)
Evaluating the impact of early intervention as a means to prevent or ameliorate developmental disabilities has been a long standing problem and the issue of effectiveness continues to be debated. This study explored the utility of Goal Attainment Scaling as a planning and evaluation tool whereby intervention outcomes for infants and families could be documented. The 23 families in this study were participants in a larger research effort evaluating the implementation of community based, family-focused intervention. An average of 5.9 goals were written for each family, with approximately 60% of goals written for infants and 40% for families. Attainment of goals was evident in a mean T-score of 51.9 for post-test values and in documentation that approximately two-thirds of all goals were attained at least at the expected level. The practical features of Goal Attainment Scaling and the correspondence of goal attainment scores with other measures of change suggest that it may be a valuable approach to complement traditional evaluation strategies.
Schizofreni och psykosvård : en bok för anhöriga, patienter och andra berörda om schizofreni och andra psykoser och om den psykiatriska rehabiliteringen vid dessa tillstånd
Rydin, D.
(1992)
School performance in primary school and psychosocial problems in young adulthood among care leavers from long term foster care
Berlin M, Vinnerljung B & Hjern A
(2011)
We used data from Swedish national registers for ten entire birth year cohorts (1972–1981) to examine psychosocial outcomes in young adulthood for youth that left long term foster care after age 17, comparing them with majority population peers, national adoptees and peers who had received in-home interventions before age 13. The population was followed in the registers from age 16 to 2005. Data were analyzed in Cox regression models.
Youth who left long term foster care had six-to eleven fold sex and birth year adjusted excess risks for suicide attempts, substance abuse and serious criminality from age 20, and for public welfare dependency at age 25. Overrisks were considerably lower for the in-home intervention group and the national adoptees. Adjusting results for poor school performance in the final year in primary school (ages 15–16) reduced overrisks by 38–52% for care leavers from long term foster care.
Irrespective of issues of causality, poor school performance seems to be a major risk factor for future psychosocial problems among youth who age out of long term foster care. The results suggest that promoting foster children's school performance should be given high priority by agencies.
School-based support groups for adolescents with a substance-abusing parent.
Gance-Cleveland B, Mays MZ.
(2008)
BACKGROUND Adolescents with substance-abusing parents need interventions to reduce their risk for a variety of problems. School-based support groups (SBSGs) have been proposed to increase resilience in this population. OBJECTIVE The purpose of this study was to evaluate a SBSG for adolescents with substance-abusing parents. STUDY DESIGN The randomized, controlled study was conducted with high-school students (n = 109) to evaluate the impact of SBSGs on resiliency. Resiliency was operationalized as positive physical health, mental health, and risk behaviors in the presence of adverse life events. Data were collected pre- and postintervention. RESULTS Significant improvements in knowledge of substance abuse were noted. Findings suggested gender differences in coping and health outcomes and positive trends in substance use. CONCLUSIONS SBSGs may increase resilience in this at-risk population. However, there were gender differences in response to the intervention, and group facilitators should be aware that participants' gender may influence response to the groups. J Am Psychiatr Nurses Assoc, 2008; 14(4), 297-309. DOI: 10.1177/1078390308321223.
Screening depressed patients in family practice: A rapid technique
Beck A, Beck R.
(1972)
Screening family burden in clinical practice : the development of a new instrument and investigation of its correlates to psychotic disorders
Hjärthag, F.
(2011)
The primary purpose of this thesis is to develop a short and user-friendly instrument for the assessment of family burden caused by psychotic disorders. A secondary purpose is to further investigate variables that might be linked to an increased burden. Of these variables, patients' reduced functioning will be addressed in more detail. As a final purpose, ratings of disorder-related variables carried out by staff will be compared to similar ratings carried out by relatives. These different purposes are investigated in five studies.In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) is created. This new screening instrument contains ten statements and shows good psychometrical properties for those dimensions that are investigated. In the second study (Paper II) results show that increased family burden can be tied to patients' impaired functioning as well as to patients' higher self ratings regarding distress. In the third study (Paper III) different parts of patients' observable behavioral functioning are investigated and results show that most functional dimensions correlate with family burden. Also staff ratings of function are compared with relatives' ratings and despite similar patterns in ratings there are differences. In the fourth study (Paper IV) demographic variables are studied and results show that only higher age and fewer contact hours correlate significantly with lower burden. Also, the BIRP instrument shows good stability. In the fifth study (Paper V) correlations with family burden are generally stronger for relatives' own ratings of illness activity as compared to symptom ratings made by staff. Relatives' ratings of illness activity do not correlate significantly with staff symptom ratings on all instruments used.The conclusions of this thesis are that the new screening instrument BIRP can be considered a good instrument to use in regular clinical practice in order to measure relatives' burden in connection to psychotic disorders. Also, the thesis contributes with knowledge about what in the psychotic disorder and which demographic factors might be linked to an increase of family burden. Findings also indicate that it matters who does the rating of a disorder-related variable. Furthermore, in this thesis a theoretical framework for family burden is presented.
Screening family burden in clinical practice : the development of a new instrument and investigation of its correlates to psychotic disorders.
Hjärthag, F.
(2011)
The primary purpose of this thesis is to develop a short and user-friendly instrument for the assessment of family burden caused by psychotic disorders. A secondary purpose is to further investigate variables that might be linked to an increased burden. Of these variables, patients' reduced functioning will be addressed in more detail. As a final purpose, ratings of disorder-related variables carried out by staff will be compared to similar ratings carried out by relatives. These different purposes are investigated in five studies.In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) is created. This new screening instrument contains ten statements and shows good psychometrical properties for those dimensions that are investigated. In the second study (Paper II) results show that increased family burden can be tied to patients' impaired functioning as well as to patients' higher self ratings regarding distress. In the third study (Paper III) different parts of patients' observable behavioral functioning are investigated and results show that most functional dimensions correlate with family burden. Also staff ratings of function are compared with relatives' ratings and despite similar patterns in ratings there are differences. In the fourth study (Paper IV) demographic variables are studied and results show that only higher age and fewer contact hours correlate significantly with lower burden. Also, the BIRP instrument shows good stability. In the fifth study (Paper V) correlations with family burden are generally stronger for relatives' own ratings of illness activity as compared to symptom ratings made by staff. Relatives' ratings of illness activity do not correlate significantly with staff symptom ratings on all instruments used.The conclusions of this thesis are that the new screening instrument BIRP can be considered a good instrument to use in regular clinical practice in order to measure relatives' burden in connection to psychotic disorders. Also, the thesis contributes with knowledge about what in the psychotic disorder and which demographic factors might be linked to an increase of family burden. Findings also indicate that it matters who does the rating of a disorder-related variable. Furthermore, in this thesis a theoretical framework for family burden is presented.
Screening for depressive disorder in children and adolescents: validating the Center for Epidemiologic Studies Depression Scale for Children
Fendrich, M., Weissman, MM., & Warner. V.
(1990)
The utility of the Center for Epidemiologic Studies Depression Scale for Children (CES-DC), a modified version of the Center for Epidemiologic Studies Depression Scale, was explored in a sample of children, adolescents, and young adults at high or low risk for depression according to their parents' diagnosis. Proband parents were participants in the Yale Family Study of Major Depression who had children between the ages of 6 and 23 years. Diagnostic and self-report information on offspring was collected over two waves, spaced 2 years apart, from 1982 to 1986. Support was obtained for the reliability and validity of the CES-DC as a measure of depressive symptoms, especially for girls and for children and adolescents aged 12-18 years. Children with major depressive disorder or dysthymia, as defined by the Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM-III), had elevated scores in comparison with all other respondents. The CES-DC lacked diagnostic specificity; children with a range of current DSM-III diagnoses had elevated scores on the measure. A cutoff point of 15 and above for screening children and adolescents for current major depressive disorder or dysthymia may be optimal. Depressed respondents scoring below this cutoff point (false negatives) showed better social adjustment than true positives; nondepressed respondents scoring above this cutoff point (false positives) showed worse adjustment than true negatives. Factor analysis was used to construct an abbreviated, four-item version of the scale. The abbreviated scale was shown to be useful as a screen.
Screening for DSM-IV externalizing disorders with the Child Behavior Checklist: A receiver-operating characteristic analysis
Hudziak JJ, Copeland W, Stanger C, Wadsworth M.
(2004)
Background: This study examines the diagnostic accuracy of the CBCL syndrome AS scales for predicting DSM-IV Attention Deficit-Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder with or without Conduct Disorder (ODD/CD).
Methods: The sample included 370 children (187 probands and 183 siblings) participating in a family genetic study of attention and aggressive behavior problems. Univariate and stepwise logistic regression analyses were used to derive models for predicting two diagnostic conditions: ADHD and ODD/CD.
Results: The Attention Problems syndrome significantly predicted ADHD, and ODD/CD was significantly predicted by the Aggressive Behavior syndrome. Both scales demonstrated good diagnostic accuracy, as assessed through receiver operating characteristics analyses. Cut-point analyses confirmed the utility of low T-scores, 55 on the respective syndromes, for efficiently discriminating cases from noncases.
Conclusions: CBCL syndromes display good diagnostic efficiency for assessing common externalizing disorders in children.
Participation of disabled children in individual decisions about their lives and in public decisions about service development
Cavet J, Sloper P.
(2004)
A literature review was carried out to establish what evidence exists about disabled children's participation in decision-making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available.
Paternal influences on treatment outcome of behavioral parent training in children with attention-deficit/hyperactivity disorder
van den Hoofdakker, B. J., Hoekstra, P. J., van der Veen-Mulders, L., Sytema, S., Emmelkamp, P. M. G., Minderaa, R. B., & Nauta, M. H.
(2014)
This study aims to explore the influence of paternal variables on outcome of behavioral parent training (BPT) in children with attention-deficit/hyperactivity disorder (ADHD). 83 referred, school-aged children with ADHD were randomly assigned to BPT plus ongoing routine clinical care (RCC) or RCC alone. Treatment outcome was based on parent-reported ADHD symptoms and behavioral problems. Moderator variables included paternal ADHD symptoms, depressive symptoms, and parenting self-efficacy. We conducted repeated measures analyses of variance (ANOVA) for all variables, and then analyzed the direction of interaction effects by repeated measures ANOVA in high and low scoring subgroups. Paternal ADHD symptoms and parenting self-efficacy played a moderating role in decreasing behavioral problems, but not in decreasing ADHD symptoms. Paternal depressive symptoms did not moderate either treatment outcome. BPT is most beneficial in reducing children's behavioral problems when their fathers have high levels of ADHD symptoms or high-parenting self-efficacy.
Paternal predictors of the mental health of children of Vietnamese refugees
Vaage, A. B., Thomsen, P. H., Rousseau, C., Wentzel-Larsen, T., Ta, T. V., & Hauff, E.
(2011)
Background
Intergenerational transmission of trauma as a determinant of mental health has been studied in the offspring of Holocaust survivors and combat veterans, and in refugee families. Mainly negative effects on the children are reported, while a few studies also describe resilience and a possible positive transformation process. A longitudinal prospective cohort study of Vietnamese refugees arriving in Norway in 1982 reports a 23 years follow-up, including spouses and children born in Norway, to study the long-term effects of trauma, flight, and exile on the offspring of the refugees.
Objectives of the study:
1. To study the association between the psychological distress of Vietnamese refugee parents and their children after 23 years resettlement.
2. To analyse paternal predictors for their children's mental health.
Methods
Information from one or both parents at arrival in 1982 (T1), at follow-up in 1985 (T2), and 23 years after arrival (T3) was included. The mental health was assessed by the Global Severity Index (GSI) of the self-report Symptom Check List-90-R (SCL-90-R) for parents (n = 88) and older children (age 19-23 yrs, n = 12), while children aged 4-18 (n = 94) were assessed using the Strengths and Difficulties Questionnaire (SDQ).
Results
Thirty percent of the families had one parent with a high psychological distress score ("probable caseness" for a mental disorder), while only 4% of the children aged 10 - 23 years were considered as probable cases. In spite of this, there was an association between probable caseness in children and in fathers at T3. A significant negative paternal predictor for the children's mental health at T3 was the father's PTSD at arrival in Norway, while a positive predictor was the father's participation in a Norwegian network three years after arrival.
Conclusions
Children of refugees cannot be globally considered at risk for mental health problems. However, the preceding PTSD in their fathers may constitute a specific risk for them.
Paternal predictors of the mental health of children of Vietnamese refugees
Vaage, A. B., Thomsen, P. H., Rousseau, C., Wentzel-Larsen, T., Ta, T. V., & Hauff, E.
(2011)
Background
Intergenerational transmission of trauma as a determinant of mental health has been studied in the offspring of Holocaust survivors and combat veterans, and in refugee families. Mainly negative effects on the children are reported, while a few studies also describe resilience and a possible positive transformation process. A longitudinal prospective cohort study of Vietnamese refugees arriving in Norway in 1982 reports a 23 years follow-up, including spouses and children born in Norway, to study the long-term effects of trauma, flight, and exile on the offspring of the refugees.
Objectives of the study:
1. To study the association between the psychological distress of Vietnamese refugee parents and their children after 23 years resettlement.
2. To analyse paternal predictors for their children's mental health.
Methods
Information from one or both parents at arrival in 1982 (T1), at follow-up in 1985 (T2), and 23 years after arrival (T3) was included. The mental health was assessed by the Global Severity Index (GSI) of the self-report Symptom Check List-90-R (SCL-90-R) for parents (n = 88) and older children (age 19-23 yrs, n = 12), while children aged 4-18 (n = 94) were assessed using the Strengths and Difficulties Questionnaire (SDQ).
Pathways to lifespan health following childhood parental death
Luecken, L.J. & Roubinov, D.S.
(2012)
Abstract
The death of a parent is a profoundly stressful form of childhood adversity, increasing the short- and long-term risk of mental health problems. Emerging research suggests it may also disrupt biological regulatory systems and increase the risk of long-term physical health problems. This article presents a theoretical framework of the process by which the experience of parental death during childhood may influence mental and physical health outcomes over time. Drawing from a broad literature on adaptation following childhood parental loss, we focus on risk and protective factors in the childhood environment that are theoretically and empirically linked to emotional and biological regulatory responses to stress later in life, the effects of which may accumulate to impact long-term health.
Patient/relative power in home-care nursing: a study of involvement and influence from the district nurses' point of view
Rydeman I, Törnkvist L, Gustafsson B.
(2005)
The aim of the study was to describe district nurses 'views and experiences of patients ' and relatives ' involvement and influence in home-care nursing. Data were collected by means of semi-structured interviews with ten district nurses. The data analysis was interpreted by a hermeneutic method, and the SAUC model for confirming nursing was used as a theoretical framework. The findings revealed that the district nurses' views of human being, and their need to control the home-care situation as experts, were decisive factors for patient/relative power and non power in home-care nursing. The preconditions for patient/relative power, according to the district nurses, were related to whether patients/relatives felt motivated to co-operate, expressed their own wishes, and had competence. Some significant preconditions were required for the district nurses to support patient/relative power i.e., that the district nurses had patient/relative involvement and influence as an explicit nursing goal and believed that it improved home care nursing. Conclusion, this study indicates the importance of the district nurses ' awareness about their own view of human being, their attitudes on patient/relative power and their individual strategies and competence to support the patients/relatives involvement and influence in home- care nursing.
Patient/relative power in home-care nursing: A study of involvement and influence from the district nurses' point of view.
Rydeman, I., Törnkvist, L., & Gustafsson, B.
(2005)
Patienternas psykiatri
Steinholtz Ekekrantz, Lena
(1995)
Seeing the glass half full: Optimistic expressive writing improves mental health among chronically stressed caregivers
MacKenzie, C. S., Wiprzycka, U. J., Hasher, L. & Goldstein, D.
(2008)
Selecting Graphic Symbols for an Initial Request Lexicon
Schlosser, R. W., & Sigafoos, J.
(2002)
The establishment of an initial request lexicon is often targeted when introducing augmentative and alternative communication systems to beginning communicators. For many of these individuals, graphic symbols provide an effective way to communicate requests to others. Because there are literally dozens of graphic symbol sets and systems to choose from, interventionists face the dilemma of selecting those that are deemed appropriate. This article integrates theory and research concerning the selection of graphic symbols for an initial request lexicon. Directions for further research are articulated, and, when the evidence permits, suggestions for clinical practice are offered.
Patients' sense of support within the family in the palliative care context: what are the influencing factors?
Milberg A, Wåhlberg R, Krevers B.
(2014)
OBJECTIVE: Mutual support within the family is of great importance to maintain
its proper functioning. The study aim, which was based on a family system
approach, was to evaluate which variables are associated with patients' sense of
support within the family in the palliative care context.
METHODS: We recruited 174 adult patients (65% of those eligible) from six
palliative home care units, who had non-curable disease with an expected
short-term survival, such as disseminated cancer or non-malignant diagnosis. The
relationship between the endpoint and individual factors were evaluated in a
stepwise model-building procedure using generalised linear model (ordinal
multinomial distribution and logit link).
RESULTS: The respondents' ratings of their sense of support within the family
ranged from 1 (never) to 6 (always), with a mean value of 5.2 (standard deviation
1.06). Patients who less frequently sensed family support experienced more often
stress, worry about their private economy, lower self-efficacy, lower sense of
security with palliative care provided (lower ratings on subscales of care
interaction, mastery and prevailed own identity), more often anxiety, less often
perceived general well-being for closest ones and less often sense of support
from more distant family members. In the model building, three variables were
selected to predict the patients' sense of support within the family.
CONCLUSIONS: The dying patients' sense of support within the family related to
several factors, and these may help the palliative care teams to identify
patients at risk and to alleviate suffering, for example, through supporting the
closest family members.
Patients’ and next-of-kins’ attitudes towards compulsory psychiatric care
Wallsten, Tuula, Östman, Margareta, Sjöberg, Rickard L. &Kjellin, Lars
(2008)
The introduction of a new Civil Commitment Act in Sweden in 1992 involved a shift of emphasis from medical to judicial authority. Little is known about general patient attitudes to compulsory care. The aim of the study was to study possible differences in attitudes, before and after the mental health law reform, among involuntarily and voluntarily admitted patients and their next-of-kins towards involuntary psychiatric admission. Samples of 84 committed and 84 voluntarily admitted patients in 1991 and 118 committed and 117 voluntarily admitted patients in 1997–99 were interviewed within 5 days from admission and at discharge, or after 3 weeks of care. Samples of 64 next-of-kins to the committed patients and 69 next-of-kins to the voluntarily admitted patients in 1991, and 73 and 89 next-of-kins, respectively, in 1997–99 were interviewed approximately 1 month after the admission. Few changes in attitudes were found between the two study occasions. A majority of all patients stated that it should be possible to compulsorily admit patients, and a great majority of the patients and the next-of kins stated that decisions regarding compulsory admission should be taken by doctors. Most patients and next-of-kins regarded decisions about involuntary psychiatric care mainly as a medical matter. Strong support for coercion in order to protect the patient and others was found among next-of-kins. The law reform was not reflected in attitudinal differences.
Patterns amongst behavior states, sociocommunicative, and activity variables in educational programs for students with profound and multiple disabilities
Arthur, M.
(2004)
Recent investigations into the behavior states of students with profound and multiple disabilities have underlined the importance of better understanding the part that educational variables play in relation to levels of individual alertness and involvement. In the study reported here, 10 students in this population were observed for a full day each and detailed, noncontinuous information was collected on several contextual factors and student behavior states, using an interval recording technique. This paper examines transitional probabilities for observed student behavior states over time and also explores potential relationships between states, communicative conditions and activities taking place in educational settings. These sequential estimates provide evidence of state stability and positive relationships amongst student engagement and active communicative and social learning environments. Implications for practice and further research are discussed.
Patterns of care and support in old age
Sigurdardottir, S.
(2013)
This study describes the situation for community living older people, 65 years of age and older in Iceland, analyzing their needs for care and services and how these needs are met. The study analyzes the relationship between the main providers of help and care, the formal caregivers and the informal carers. The study further depicts what kinds of care and support older informal caregivers provide and receive themselves and analyze what factors are related to providing care alone or in combination with other caregivers, informal and formal. The study also analyzes the relationship and mutual support between grandparents and grandchildren and whether there are gender differences in intergenerational relations and support. As little research has been conducted on informal care in Iceland, it is important to show the importance of the informal carers in the care paradigm. Two Icelandic studies were used for the descriptions and analysis. The main data source is the ICEOLD survey (Icelandic older people), based on a random representative national sample of 700 non-institutionalized persons in ages 65 – 79 years and 700 persons aged 80+. The final sample consists of 1,189 older persons to which an introduction letter was sent. They were contacted by phone a few days later and 782 persons, 341 men and 441 women, agreed to participate, giving a response rate of 66%. A study carried out among college students in Iceland, The Grammar School study, was also used to retrieve information on intergenerational relations between grandparents and grandchildren.
Self-determination and quality of life: Implications for special education services and supports
Wehmeyer ML, Schalock RL.
(2001)
The United States is engaged in a debate concerning the efficacy of the public school system
and about reforms to address the perceived inadequacies of the current system. This is not a new
debate or a unique time in the history of education, for such debates ebb and flow as
society's understanding of and emphasis on the purposes of education change. We say "purposes"
in plural form intentionally, for despite overheated rhetoric to the opposite, the educational system
has always had multiple purposes, from learning for the sake of knowledge itself to preparation
for employment and citizenship (Pulliam & Van Patten, 1995).
Currently, the debate revolves around the importance of school accountability through,
primarily, standards-based reform (Sykes & Plastrik, 1993). Although the intent of this article
is not to critique this particular type of reform, there has been concern over the possible
conflict between long-held beliefs about the education of students with dis abilities and
standards-based reform, with special attention to the extent to which testing based on state
content and performance standards narrows the curriculum to only core academic content areas
and limits the functionality of the curriculum for students with dis abilities (Committee on
Goals 2000, 1997; Committee on Appropriate Test Use, 1999; Wehmeyer, Lattin, & Agran, in
press).
Individualization is a hallmark of the federal legislation mandating the education of students
with disabilities and best practice in the field. Consequently, there is considerable concern about the
impact of mandates to provide access to the general curriculum on the education of these
students.
We begin this article, which focuses on self-determination and quality of life in special
education services and supports, with reference to these concerns for two reasons. First, we
recognize that educators working with students with disabilities can no longer consider'
curricular and instructional content as separate from the general curriculum, whether it is the
provision of transition services, the delivery of functional or occupational curriculum, or promoting
self-determination to achieve a higher quality of life. Second, we want to examine the issue of
promoting self-determination to enhance quality of life within the context of and as representing
excellent education for all students. Our contention is that a focus on self-determination
provides a means to achieve both objectives.1
Self-Efficacy: The exercise of control
Bandura, A.
(1997)
Ideal for advanced undergraduate or graduate courses, or for professional use, the book is based on Bandura's theory that those with high self-efficacy expectancies - the belief that one can achieve what one sets out to do - are healthier, more effective, and generally more successful than those with low self-efficacy expectancies. He begins with a discussion of theory and method: what self-efficacy is and how it can be developed. Bandura then demonstrates how belief in one's capabilities affects development and psychosocial functioning during the course of life, underscoring provocative applications of this work to issues in education, health, psychopathology, athletics, business, and international affairs
Self-management education programmes by lay leaders for people with chronic conditions
Foster G, Taylor SJ, Eldridge SE, Ramsay J, Griffiths CJ.
(2007)
BACKGROUND:
Lay-led self-management programmes are becoming widespread in the attempt to promote self-care for people with chronic conditions.
OBJECTIVES:
To assess systematically the effectiveness of lay-led self-management programmes for people with chronic conditions.
SEARCH STRATEGY:
We searched: the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library 2005, Issue 1), MEDLINE (January 1986 to May 2006), EMBASE (January 1986 to June 2006), AMED (January 1986 to June 2006), CINAHL (January 1986 to June 2006), DARE (1994 to July 2006, National Research Register (2000 to July 2006), NHS Economic Evaluations Database (1994 to July 2006), PsycINFO (January 1986 to June 2006), Science Citation Index (January 1986 to July 2006), reference lists and forward citation tracking of included studies. We contacted principal investigators and experts in the field. There were no language restrictions.
SELECTION CRITERIA:
Randomised controlled trials (RCTs) comparing structured lay-led self-management education programmes for chronic conditions against no intervention or clinician-led programmes.
DATA COLLECTION AND ANALYSIS:
Two authors independently assessed trial quality and extracted data. We contacted study authors for additional information. Results of RCTs were pooled using a random-effects model with standardised mean differences (SMDs) or weighted mean differences (WMDs) for continuous outcomes.
MAIN RESULTS:
We included seventeen trials involving 7442 participants. The interventions shared similar structures and components but studies showed heterogeneity in conditions studied, outcomes collected and effects. There were no studies of children and adolescents, only one study provided data on outcomes beyond six months, and only two studies reported clinical outcomes.
PRIMARY OUTCOMES:
Health status: There was a small, statistically-significant reduction in: pain (11 studies, SMD -0.10 (95% confidence interval (CI) -0.17 to -0.04)); disability (8 studies, SMD -0.15 (95% CI -0.25 to -0.05); and fatigue (7 studies, SMD -0.16 (95% CI -0.23 to -0.09); and small, statistically-significant improvement in depression (6 studies, SMD -0.16 95% CI -0.24 to -0.07). There was a small (but not statistically- or clinically-significant) improvement in psychological well-being (5 studies; SMD -0.12 (95% CI -0.33 to 0.09)); but no difference between groups for health-related quality of life (3 studies; WMD -0.03 (95% CI -0.09 to 0.02). Six studies showed a statistically-significant improvement in self-rated general health (WMD -0.20 (95% CI -0.31 to -0.10). Health behaviours: 7 studies showed a small, statistically-significant increase in self-reported aerobic exercise (SMD -0.20 (95% CI -0.27 to -0.12)) and a moderate increase in cognitive symptom management (4 studies, WMD -0.55 ( 95% CI -0.85 to -0.26)). Healthcare use: There were no statistically-significant differences between groups in physician or general practitioner attendance (9 studies; SMD -0.03 (95% CI -0.09 to 0.04)). There were also no statistically-significant differences between groups for days/nights spent in hospital (6 studies; WMD -0.32 (95% CI -0.71 to 0.07)). Self-efficacy: (confidence to manage condition) showed a small statistically-significant improvement (10 studies): SMD -0.30, 95% CI -0.41 to -0.19. No adverse events were reported in any of the studies.
AUTHORS' CONCLUSIONS:
Lay-led self-management education programmes may lead to small, short-term improvements in participants' self-efficacy, self-rated health, cognitive symptom management, and frequency of aerobic exercise. There is currently no evidence to suggest that such programmes improve psychological health, symptoms or health-related quality of life, or that they significantly alter healthcare use. Future research on such interventions should explore longer term outcomes, their effect on clinical measures of disease and their potential role in children and adolescents.
Self-report measures of family functioning: extensions of a factorial analysis
Bloom, B. L. and S. Naar
(1994)
A factor analysis of four commonly used self-report measures of family functioning (Bloom, 1985) yielded 15 5-item factors. Five of these item sets have now been revised and strengthened. These modifications were undertaken because a review of the literature has revealed that the results of the factor analysis are being increasingly used in family studies. The rationale and description of the revisions of the factor item sets are presented. Psychometric analysis of the revised factors suggests that factor scores are highly reliable as well as stable over time. In addition to presenting comprehensive reliability data, this article provides information regarding factor score intercorrelations and structure, as well as a commentary on the factors themselves.
Self-reported coping behavior of wives of alcoholics and its association with drinking outcome
Orford, J., Guthrie, S., Nicholls, P., Oppenheimer, E., Egert, S. & Hensman, C.
(1975)
The frequency of the use of coping behavior by wives of alcoholics was found to be related to their husband's drinking outcome. In general, a high frequency of coping behavior was associated with a poor outcome, but some components of coping behavior were more likely than others to be linked with a poor prognosis.
Seminar 5-7 may. European home care seminar 2002, 109 (looseleaf).
European Home Care Committe (FIHCC)
(2002)
Seniorbostäder : så bygger man idag och förbereder för teknikstöd/hjälpmedel och bostadsanpassning. [Elektronisk resurs].
Jahlenius, L.
(2007)
Sensation seeking: A comparative approach to a human trait
Zuckerman M.
(1984)
A comparative method of studying the biological bases of personality compares human trait dimensions with likely animal models in terms of genetic determination and common biological correlates. The approach is applied to the trait of sensation seeking, which is defined on the human level by a questionnaire, reports of experience, and observations of behavior, and on the animal level by general activity, behavior in novel situations, and certain types of naturalistic behavior in animal colonies. Moderately high genetic determination has been found for human sensation seeking, and marked strain differences in rodents have been found in open-field behavior that may be related to basic differences in brain neurochemistry. Agonistic and sociable behaviors in both animals and humans and the trait measure of sensation seeking in humans have been related to certain common biological correlates such as gonadal hormones, monoamine oxidase (MAO), and augmenting of the cortical evoked potential.
The monoamine systems in the rodent brain are involved in general activity, exploratory behavior, emotionality, socialization, dominance, sexual and consummately behaviors, and intracranial self-stimulation. Preliminary studies have related norepinephrine and enzymes involved in its production and degradation to human sensation seeking. A model is suggested that relates mood, behavioral activity, sociability, and clinical states to activity of the central catecholamine neurotransmitters and to neuroregulators and other transmitters that act in opposite ways on behavior or stabilize activity in the arousal systems. Stimulation and behavioral activity act on the catecholamine systems in a brain–behavior feedback loop. At optimal levels of catecholamine systems activity (CSA) mood is positive and activity and sociability are adaptive. At very low or very high levels of CSA mood is dysphoric, activity is restricted or stereotyped, and the organism is unsocial or aggressively antisocial. Novelty, in the absence of threat, may be rewarding through activation of noradrenergic neurons.
Sense of coherence, burden and mental health in caregiving: A systematic review and meta-analysis.
Del-Pino-Casado R., Espinosa-Medina A., López-Martínez C., Orgeta V.
(2019)
BACKGROUND: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers.
METHOD: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence an subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings.
RESULTS: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiverburden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higherlevels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect.LIMITATIONS: Most of the studies included in this review were cross-sectional.
CONCLUSIONS: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.
Separation–individuation conflicts in children of Holocaust survivors
Barocas, H. A., & Barocas, C. B.
(1980)
This article examines the developmental conflicts of children of Holocaust Survivors with specific emphasis on psychic trauma and second-generation Survivor effects. Issues related to depression, guilt, and aggression are discussed in relation to Mahler's separation-individuation process. Developmental failures at early phases may predispose these children toward low self-esteem, narcissistic vulnerability, identity problems, and impairments in interpersonal relations. The need for further research and clinical investigation is emphasized to help develop preventive measures and attenuate the effects of the Holocaust on future generations.
Services for supporting family carers of elderly people in Europe : Characteristics, coverage and usage : Eurofamcare : National background report for Sweden.
Johansson, L.
(2004)
Severe multiple disabilities
Granlund, M., Wilder, J., & Almqvist, L.
(2013)
Severe multiple disabilities
Granlund, M., Wilder, J., & Almqvist, L.
(2013)
Sex differences in aggression between heterosexual partners: A meta-analytic review
Archer, J.
(2000)
Meta-analyses of sex differences in physical aggression to heterosexual partners and in its physical consequences are reported. Women were slightly more likely (d = -.05) than men to use one or more act of physical aggression and to use such acts more frequently. Men were more likely (d = .15) to inflict an injury, and overall, 62% of those injured by a partner were women. The findings partially support previous claims that different methods of measurement produce conflicting results, but there was also evidence that the sample was an important moderator of effect size. Continuous models showed that younger aged dating samples and a lower proportion of physically aggressive males predicted effect sizes in the female direction. Analyses were limited by the available database, which is biased toward young dating samples in the United States. Wider variations are discussed in terms of two conflicting norms about physical aggression to partners that operate to different degrees in different cultures.
Perceived social support from friends and perceived social support from family scales revised.
Rice R.
(1996)
This study reports on the use of the Perceived Social Support from Family and Perceived Social Support from Friends scales (Procidano & Heller, 1983) in a sample of adolescents at the initiation of outpatient treatment. Reliability and validity evidence is presented that generally replicates earlier studies utilizing these instruments. Multiple regression results are also reported, indicating that different combinations of perceived support from family and friends significantly predict psychosocial maturity levels in this clinical adolescent sample.
Perceived Stress and ADHD Symptoms in Adults
Combs, M. A., Canu, W. H., Broman-Fulks, J. J., Rocheleau, C. A., & Nieman, D. C.
(2015)
OBJECTIVE:
Given that ADHD has been linked to dysfunction across development and in many life domains, it is likely that individuals experiencing these symptoms are at increased risk for experiencing stress. The current study examines the association between ADHD and other psychiatric symptoms and perceived stress in a community sample of adults.
METHOD:
Perceived stress data collected from 983 participants (M(age) = 45.6 years) were analyzed primarily via hierarchical multiple regression using ADHD symptom clusters, demographic variables, and anxiety and depression scale variables as predictors.
RESULTS AND CONCLUSION:
ADHD symptoms positively associated with perceived stress. Inattention and sluggish cognitive tempo (SCT), as opposed to hyperactivity-impulsivity and newly proposed executive dysfunction symptoms, were the most consistent predictors. These findings reinforce that the experience of ADHD symptoms in adulthood is associated with stress and suggest that SCT could play an important role in assessing risk for negative adult outcomes.
Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure: Qualitative Study
Allemann, Hanna; Thylén, Ingela; Ågren, Susanna; Liljeroos, Maria; Strömberg, Anna
(2019)
Background: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them.Objective: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF.Methods: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis.Results: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future.Conclusions: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice.
Perceptions of psychiatric care among foreign- and Swedish-born people with psychotic disorders
Hultsjö, S., Berterö, C., & Hjelm, K.
(2007)
Aim. This paper is a report of a study to explore different perceptions of psychiatric care among foreign- and Swedish-born people with psychotic disorders.
Background. Research from different countries reports a high-incidence of psychosis among migrants. The risk-factors discussed are social disadvantages in the new country. To understand and meet the needs of people from different countries, their perspective of psychiatric care must be illuminated and taken into consideration.
Method. A phenomenographic study was conducted in 2005–2006 using semi-structured interviews with a convenience sample of 12 foreign-born people and 10 Swedish-born people with psychosis.
Findings. Three categories were identified: personal and family involvement in care; relating to healthcare staff; and managing illness and everyday life. Foreign-born people differed from Swedish-born people in that they struggled to attain an everyday life in Sweden, relied on healthcare staff as experts in making decisions, and had religious beliefs about mental illness. Among Swedish-born people, the need for more support to relatives and help to perform recreational activities was important.
Conclusion. It is important to identify individual perceptions and needs, which may be influenced by cultural origins, when caring for patients with psychosis. Previous experience of care, different ways of relating to staff, and individual needs should be identified and met with respect. Social needs should not be medicalized but taken into consideration when planning care, which illustrates the importance of multi-professional co-operation.
Perceptions of the relationship between mental health professionals and family caregivers: has there been any change?
Nicholls, E. and R. Pernice
(2009)
A number of international studies have highlighted family caregivers' (FCGs') dissatisfaction with their relationship with mental health professionals (MHPs) when providing care for mentally ill family members. However, few studies have explored the mental health professionals' perspective of this relationship. This study explored both FCGs' and MHPs' perspectives. Semi-structured interviews were conducted with seven FCGs and seven MHPs from two different geographical areas of New Zealand. Thematic analysis of these interviews revealed four distinct MHP themes and five FCG themes. The themes illuminate incongruence between MHPs' intentions to form a positive working relationship with families and the FCGs' mainly negative experiences of this relationship
Perceptions, needs and mourning reactions of bereaved relatives confronted with a sudden unexpected death
Merlevede, E., Spooren, D., Henderick, H., Portzky, G., Buylaert, W., Jannes, C., Calle, P., Van Staey, M., De Rock, C., Smeesters, L., Michem, N., & van Heeringen, K.
(2004)
Abstract
Many individuals die suddenly and unexpectedly outside the hospital or in the emergency department (ED). The aim of this study was to determine the perceptions, needs and mourning reactions of their bereaved relatives and to assess the relationship with the cause of death. Data were collected prospectively in the emergency department of a university hospital by means of an interview and a standardised questionnaire. We registered 339 deaths over a period of 10 months, of which 110 met the inclusion criteria for sudden and unexpected death. The study group included 74 relatives of 53 deceased individuals. The majority of relatives were confronted with a traumatic death outside the hospital. Most frequently reported complaints concerned a lack of information and being left with unanswered questions. Psychological problems related to mourning were mainly associated with a traumatic cause of death. The results of this study highlight the specific needs of relatives in case of a sudden death either outside the hospital or in the ED and may serve as a basis for recommendations for improvement of psychological care of individuals who are suddenly bereaved.
Perlas Liv
Pere, Tuula
(2019)
Ålder: 6-9 år
Hela familjen står inför nya och stora utmaningar då den allvarligt sjuka Perla får komma hem. Fastän det är jobbigt att sköta lillasyster, vill Jakob delta efter bästa förmåga. Han är väldigt bra på att lugna ner henne, för han kan smeka och sjunga särskilt mjukt. Jakob vill att Perla tas med till skolans viktiga evenemang.– Det stör inte mig fastän de andra aldrig har sett en sådan baby som Perla. Jag kan nog förklara det för dem, säger Jakob. Sommarens värme och dofter omsluter hela familjen, också lilla Perla.
Perpetration patterns and environmental contexts of IPV in Sweden: Relationships with adult mental health
Miller, L. E., Cater, Å. K., Howell, K. H. & Graham-Bermann, S. A.
(2014)
Although excellent data exist on the overall prevalence of childhood exposure to intimate partner violence (IPV), there is less information available on the specific patterns of IPV exposure in childhood and how they influence adult mental health. The current study examines 703 Swedish adults who reported exposure to IPV in childhood. Participants were part of a large national study on violence exposure. They provided an extensive history of their exposure to IPV and maltreatment experiences during childhood via electronically administered questionnaires. Mean comparison and multivariate regression methods were employed to assess differences in violence severity by reported perpetration pattern (mother-only, father-only, bidirectional or other), the association between violence severity and environmental context, and the contribution of these characteristics to adult mental health outcomes. Overall, violence perpetrated in public and by fathers was more severe and was related to poorer mental health outcomes in adulthood for child witnesses. These findings provide important insight into possible clinical "flags" for identifying children at high risk for exposure to IPV and abuse in the home.
Personalförsörjning och kompetensutveckling : IT som stöd i vård och omsorg : Rapport nr 5 från ett interaktivt seminarium inom ITHS-programmet 8 april 2003.
Vårdalstiftelsen
(2003)
Siblings of children with cancer – their experiences of participating in a person-centered support intervention combining education, learning and reflection: Pre- and post-intervention interviews
Jenholt Nolbris, M. & Hedman Ahlström, B.
(2014)
Abstract
PURPOSE:
To evaluate a person-centered intervention, directed to siblings with a brother or sister newly diagnosed with cancer that combines education, learning and reflection about cancer.
METHOD:
Qualitative methods with pre- and post-intervention semi-structured interviews were conducted. Fourteen siblings aged 9-22 years participated. A qualitative content analysis was carried out.
RESULTS:
The result comprises of five themes: 'grasping for knowledge about cancer, 'thinking for hours and having nightmares', 'experiencing physical pain', 'being emotional in several ways', 'waiting for a normal, good life despite the uncertain future". Pre-intervention; a low level of knowledge of cancer treatments and its side effects was revealed; siblings slept poorly, lay awake thinking and had nightmares about cancer; they felt pain in different parts of their body; they felt emotional and angry and were anxious as cancer is life-threatening; in the future the sick child will finished treatment and recovered. Post-intervention; siblings described having specific knowledge, felt more informed, and that it was easier to understand the sick child's situation; they slept better, but still had a lot on their minds regarding the sick child; most siblings said they no longer experienced pain, felt better and were happier but could still get sad; in the future the sick child would be healthy, not exactly as before, but almost.
CONCLUSION:
Person-centered intervention helps siblings to be more knowledgeable about the sick child's cancer, leading to a more realistic view about treatments and consequences. Further studies of person-centered interventions for siblings are important.
Copyright © 2014 Elsevier Ltd. All rights reserved.
Person-centered care—ready for prime time
Ekman, I., Swedberg, K., Taft, C.,
(2011)
Abstract
Long-term diseases are today the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. Person-centered care (PCC) has been shown to advance concordance between care provider and patient on treatment plans, improve health outcomes and increase patient satisfaction. Yet, despite these and other documented benefits, there are a variety of significant challenges to putting PCC into clinical practice. Although care providers today broadly acknowledge PCC to be an important part of care, in our experience we must establish routines that initiate, integrate, and safeguard PCC in daily clinical practice to ensure that PCC is systematically and consistently practiced, i.e. not just when we feel we have time for it. In this paper, we propose a few simple routines to facilitate and safeguard the transition to PCC.
Siblings Relationships of Children with Autism
Kaminsky, Laura & Dewey, Deborah
(2001)
This study investigated sibling relationships of children with autism compared to children with Down syndrome and siblings of normally developing children. Ninety siblings (30 per group) between the ages of 8 and 18 participated in this study. Results indicated that sibling relationships in families of children with autism were characterized by less intimacy, prosocial behavior, and nurturance than those of the two comparison groups. Both siblings of children with autism and siblings of children with Down syndrome reported greater admiration of their sibling and less quarreling and competition in their relationships relative to normally developing comparison children
Siblings’ needs and issues when a brother or sister dies of cancer
Nolbris, M., & Hellstrom, A-L.
(2005)
Abstract
To explore siblings'needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had not felt involved in the dying process with the exception of the terminal period. The siblings stated that their dissatisfaction would have been reduced if doctors and nurses had provided continuous information and support. Loneliness, anxiety, anger, and jealousy were common feelings that they expressed. Friends and school were important to the siblings, representing a normal environment free from the domination of sickness. The siblings also expressed that they needed to mourn in their own way including periods of time when they did not mourn. The absence of the dead sibling was felt particularly during family celebrations. The siblings continued to have special memories and objects, and all still included the dead sibling as a member in the family.
Significant others of suicide attempter’s – their view at the time of the acute psychiatric consultation
Magne-Ingvar, Ulla & Öjehagen, Agneta
(1999)
As part of the psychiatric assessment after a suicide attempt contact with a significant other could be of importance in order to obtain an additional view of the patient's situation, and thereby possibly broadening the basis of the assessment. The aims of this study were to investigate whether information from a significant other would be helpful in the psychiatric assessment of the patient, and also in assessing the well-being of significant others and their need for support. For the purposes of the study, the significant other (SO) who had been recommended by the patient was contacted directly after the suicide attempt. Almost all the patients (95%) agreed to a social worker contacting an SO, and all the contacted SOs (n = 81) agreed to take part in the study. A semi-structured interview was performed by telephone or in person on the same occasion as we interviewed the patient or as soon as possible afterwards. The study found that the SOs provided valuable additional information regarding the patient's situation. When comparing the outcomes of the interviews with the SOs and those of the patients, problem areas such as loneliness and lack of self-confidence were mentioned more often by SOs. Also, more patients were reported to be repeaters by SOs, and suicidal signals from the patient had been apprehended by 41% of them. Fifty-seven percent of the SOs who had given psychological and/or practical support to the patient stated it was a burden to them, particularly if the patient had psychiatric disorders other than adjustment disorders. It was also found that more than half of the SOs wanted individual counselling and/or counselling together with the patient. This study stresses the value of co-operation with the SOs after a suicide attempt, both in the immediate assessment of the patient and in the planning of treatment strategies.
The Family Talk Intervention Among Families Affected by Severe Illness: Hospital Social Workers’ Experiences of Facilitators and Barriers to its Use in Clinical Practice
Ingrid Thermaenius, Camilla Udo, Anette Alvariza, Tina Lundberg, Maja Holm, Malin Lövgren
(2024)
Hospital social workers (HSW) play an important role in health care, providing psychosocial support to families affected by severe illness, and having palliative care needs involving dependent children. However, there are few evidence-based family interventions for HSWs to apply when supporting these families. The Family Talk intervention (FTI), a psychosocial family-based intervention, was therefore evaluated in an effectiveness-implementation study. Within the study, HSWs were educated and trained in the use of FTI in clinical practice. This study examined HSWs’ experiences of barriers and facilitating factors during their initial use of FTI in clinical practice. Altogether, 10 semi-structured focus groups were held with HSWs (n = 38) employed in cancer care and specialized palliative home care for adults, pediatric hospital care, and a children’s hospice. Data were analyzed using content analysis. HSWs considered FTI to be a suitable psychosocial intervention for families affected by severe illness with dependent children. However, the way in which the care was organized acted either as a barrier or facilitator to the use of FTI, such as the HSWs’ integration in the team and their possibility to organize their own work. The HSWs’ work environment also impacted the use of FTI, where time and support from managers was seen as a significant facilitating factor, but which varied between the healthcare contexts. In conclusion, HSWs believed that FTI was a suitable family intervention for families involving dependent children where one family member had a severe illness. For successful initial implementation, strategies should be multi-functional, targeting the care organization and the work environment.
Effectiveness of a Web-Based Individual Coping and Alcohol Intervention Program for Children of Parents With Alcohol Use Problems: Randomized Controlled Trial
Håkan Wall, Helena Hansson, Ulla Zetterlind, Pia Kvillemo, Tobias H Elgán
(2024)
Background: Children whose parents have alcohol use problems are at an increased risk of several negative consequences, such as poor school performance, an earlier onset of substance use, and poor mental health. Many would benefit from support programs, but the figures reveal that only a small proportion is reached by existing support. Digital interventions can provide readily accessible support and potentially reach a large number of children. Research on digital interventions aimed at this target group is scarce. We have developed a novel digital therapist-assisted self-management intervention targeting adolescents whose parents had alcohol use problems. This program aims to strengthen coping behaviors, improve mental health, and decrease alcohol consumption in adolescents.
Objective: This study aims to examine the effectiveness of a novel web-based therapist-assisted self-management intervention for adolescents whose parents have alcohol use problems.
Methods: Participants were recruited on the internet from social media and websites containing health-related information about adolescents. Possible participants were screened using the short version of the Children of Alcoholics Screening Test-6. Eligible participants were randomly allocated to either the intervention group (n=101) or the waitlist control group (n=103), and they were unblinded to the condition. The assessments, all self-assessed, consisted of a baseline and 2 follow-ups after 2 and 6 months. The primary outcome was the Coping With Parents Abuse Questionnaire (CPAQ), and secondary outcomes were the Center for Epidemiological Studies Depression Scale, Alcohol Use Disorders Identification Test (AUDIT-C), and Ladder of Life (LoL).
Results: For the primary outcome, CPAQ, a small but inconclusive treatment effect was observed (Cohen d=-0.05 at both follow-up time points). The intervention group scored 38% and 46% lower than the control group on the continuous part of the AUDIT-C at the 2- and 6-month follow-up, respectively. All other between-group comparisons were inconclusive at either follow-up time point. Adherence was low, as only 24% (24/101) of the participants in the intervention group completed the intervention.
Conclusions: The findings were inconclusive for the primary outcome but demonstrate that a digital therapist-assisted self-management intervention may contribute to a reduction in alcohol consumption. These results highlight the potential for digital interventions to reach a vulnerable, hard-to-reach group of adolescents but underscore the need to develop more engaging support interventions to increase adherence.
Psychometric Properties of the Parental Stress Scale in Swedish Parents of Children with and without Neurodevelopmental Conditions
Therese Lindström, Tiina Holmberg Bergman, Mathilde Annerstedt, Martin Forster, Sven Bölte, Tatja Hirvikoski
(2024)
Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs.
Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337).
Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39).
Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.
Needs of Grandparents of Preschool-Aged Children with ASD in Sweden
Zakirova Engstrand Rano, Roll-Pettersson Lise, Westling Allodi Mara, Hirvikoski Tatja
(2020)
Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.
The use of the Strengths and Difficulties Questionnaire to assess mental health in adolescents with parents diagnosed with Amyotrophic Lateral Sclerosis
Stefan Nilsson, Nina Malmström, Ingela Nygren, Joakim Öhlén, Birgitta Jakobsson Larsson & Anneli Ozanne
(2025)
Amyotrophic Lateral Sclerosis (ALS) presents significant challenges for affected families. The aim for this study was to assess the feasibility of using the Strengths and Difficulties Questionnaire (SDQ) with adolescents and parents with and without ALS. The method involved repeatedly distributing the questionnaire to evaluate its content and structure within this group. The SDQ Prosocial Behaviour subscale and total difficulties score was calculated, along with median values and standard deviations. Parent-adolescent agreement was assessed using intraclass correlations. Data were collected from 11 Swedish families, including 14 adolescents (aged 8–25), 9 parents with ALS, and 8 co-parents. The findings revealed differences between parent and adolescent SDQ scores, emphasizing the need for adolescents’ self-assessments. Their SDQ scores did not indicate significant difficulties, suggesting that most were coping well with everyday life. However, there is significant heterogeneity in the experiences and needs of adolescents. A larger study is needed to confirm its usability
Living with a parent with ALS - adolescents’ need for professional support from the adolescents’ and the parents’ perspectives
Nina Malmström, Birgitta Jakobsson Larsson, Stefan Nilsson, Joakim Öhlén, Ingela Nygren, Peter M. Andersen & Anneli Ozanne
(2023)
Aim: The aim of the study was to qualitatively investigate the adolescents’ need for professional support when a parenthas amyotrophic lateral sclerosis (ALS) – from the adolescents’ and the parents’ perspectives. Methods: A total of 37 indi-vidual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis. Results: Both adolescentsand parents described the adolescents as needing professional support but found it difficult to articulate this need.However, the results indicate that the adolescents needed help in bringing manageability into their lives due to theuncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not for-gotten in the disease context and that their needs for being involved as well as for obtaining information and understand-ing, was addressed. The importance of offering the adolescents support early was emphasized, but also of activelyhelping the families to master challenges in their everyday life. Support adapted to each family’s unique situation andpreferences was desired, as the adolescents’ need for support seemed to be individual, disease-dependent and varied dur-ing different phases. Conclusion: Given the adolescents’ need for information and understanding, healthcare professionalsmust actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given theopportunity to be involved based on their own conditions, as well as to support the families to strengthen theircommunication.
Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study
Maria Samuelsson, Jenny Jakobsson, Anne Wennick, Marie-Louise Lydrup, Mariette Bengtsson
(2022)
Purpose: The purpose of the present study was to explore cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer.
Method: The study was designed as a qualitative study. Data was collected using individual semi-structured telephone interviews with 21 cancer specialist nurses. The interviews were transcribed and analysed with reflexive thematic analysis.
Results: The analysis generated one overarching theme, In the shadow of the person diagnosed with colorectal cancer, and four themes: striving for confidence, searching for ways to support, seeking individualization, and balancing between needs. Swedish colorectal cancer care is organized with the persons diagnosed with colorectal cancer as the centre of care and lacks both structure and allocated resources for supportive care for family members. Thus, support for family members has to be provided within the existing colorectal cancer care. The support provided focuses mainly on strengthening the family members' ability in the caregiving role and is offered primarily at the time of diagnosis.
Conclusion: There is an apparent need for developing supportive care plans for family members, involving repeated assessments of multidimensional needs, a tailored support, and follow-ups. Accordingly, a re-evaluation of the cancer specialist nurse's role is needed so that key nursing responsibilities are not ranked second to administrative tasks.
Keywords: Cancer specialist nurse; Colorectal cancer; Family members; Needs assessment; Nursing; Oncology; Qualitative research; Supportive care; Thematic analysis.
Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study
Maria Samuelsson, Jenny Jakobsson, Mariette Bengtsson, Marie-Louise Lydrup, Anne Wennick
(2025)
Aim: To describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory.
Design: A descriptive qualitative study with a phenomenographic approach.
Method: Individual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist.
Results: The phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support.
Conclusion: Supportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed.
Impact: There is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory.
Implications for the profession and/or patient care: Findings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging.
A Vicious Circle of Hope and Despair: Stigma Experienced by Relatives of Persons with Severe Mental Illness
Bente Weimand, Anita Johansson ,Nils Sjöström, Margda Waern & Mats Ewertzon
(2024)
Not only people suffering from severe mental illness (SMI) but also their family members experience stigma. Relatives are met with negative attitudes from healthcare professionals, which adds to the problem. This Swedish study employed a qualitative inductive explorative design in the analysis of written free-text responses from 65 persons who completed a questionnaire for relatives of persons with SMI. The overarching theme, “A vicious circle of hope and despair”, was elaborated by four categories which formed a vicious circle: “Wanting openness, understanding and acknowledgement”; “Facing a lack of understanding from others”; “Seeking understanding from mental healthcare professionals but experiencing the opposite”; and “Keeping family experiences private.” If this vicious circle of family stigma is to be broken, measures are needed for both relatives and health care professionals.
The risks of job flexibility: an analysis of reconciling paid work and informal care across organisations using the capabilities approach
Marcel Hoogenboom, Mara A. Yerkes, Wilco Kruijswijk
(2024)
While welfare states and work organisations often provide policies to facilitate a reconciliation of paid work and informal care, the literature pays little attention to employees’ actual capabilities to engage with such policies. In this article, we apply the capabilities approach to interview data from managers and employees in the Netherlands to understand employees’ use or non-use of the policies. We found that job flexibility may help workers reconcile work and care in the short run but that respondents with greater job flexibility reported more health problems than respondents with less flexibility, which calls into question the sustainability of these policies.
Seeking a care–life balance: family carers’ perspectives on how quality of life can improve when caring for an older person living with dementia
Kristin Häikiö, Jorun Rugkåsa
(2024)
Many family carers of older people living with dementia report reduced quality of life, but limited research has investigated what they believe could improve it. Our thematic analysis of in-depth interviews with 23 family carers questions the standardisation of carer support and the appropriateness of the current scope of services, and suggests strengthening carers’ independent right to support. We propose the notion of a ‘care–life balance’, which also draws attention to the different logics inherent in informal and formal care that future service development should seek to reconcile to better support families affected by dementia.
Dignity for Deeply Forgetful People How Caregivers Can Meet the Challenges of Alzheimer's Disease
Stephen G. Post
(2022)
For caregivers of deeply forgetful people: a book that combines new ethics guidelines with an innovative program on how to communicate and connect with people with Alzheimer's.
How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of―and find renewed hope in―surprising expressions of selfhood despite the challenges of cognitive decline.
In this book, Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:
• understanding the experience of dementia
• noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"
• perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers
• how to communicate optimally and use language effectively
• the value of art, poetry, symbols, personalized music, and nature in revealing self-identity
• the value of trained "dementia companion" dogs
At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.
The relevance of the workplace for combining employment and informal care for older adults: results of a systematic literature review
Thomas Geisen, Karl Krajic, Sibylle Nideröst, Ingrid Mairhuber, Charlotte Dötig, Andrin Altherr, Salome Schenk, Reka Schweighoffer
(2024)
The significance of formal and informal supports and barriers on the company level for combining employment and informal care for older adults has rarely been investigated. This is one of the main findings of a systematic literature review. This systematic literature review elucidates what can be learned from research on practices that have been developed to maintain a sustainable work–care balance. Research indicates that firms have rarely actively addressed the topic and many seem unaware of the challenges employees are facing and the support they need. If firms offer support, they often favour individual, case-based solutions, whereas systematic approaches seem less likely to be put in place. In general, the findings show that better support for companies and for carers would seem important, even urgent, but the knowledge base for offering this support is not well developed.
Undocumented adult migrants in Sweden: mental health and associated factors
Andersson Lena M. C, Hjern Anders, Ascher Henry
(2018)
Abstract
Background: Undocumented migrants (UMs) in Europe constitute a heterogeneous group. They are typically in a vulnerable and marginalised situation, since most of them have exhausted their options for gaining asylum and protection from war and persecution, many are traumatised and fear disclosure and deportation, and they typically lack basic social security. The present study investigates living conditions, access to human rights and mental health of UMs living in Sweden.
Methods: A cross-sectional study with adult UMs was performed in the three largest cities in Sweden in 2014-2016. Sampling was done via informal networks. A socioeconomic questionnaire was constructed, and psychiatric symptoms were screened for using Beck's Depression Inventory II, Beck's Anxiety Inventory and the PTSD Checklist (PCL) for civilians. Trained field workers conducted the interviews. Descriptive statistics, chi-square tests and logistic regression models were used.
Results: A total number of 104 individuals participated. Preliminary findings show that 68% of respondents were suffering from either moderate or severe anxiety, 71% from either moderate or severe depression and 58% from PTSD. No statistically significant gender differences occurred, but age was statistically significant in relation to anxiety and depression. The majority feared returning to their country of origin, for political reasons, due to war in progress there and/or because they belonged to a minority and feared harassment. Almost all had an unstable housing situation and were often forced to move. Fifty-seven percent experienced food insecurity.
Conclusion: The psychosocial situation among UMs in Sweden, in addition to insecure living conditions without a guarantee of basic needs being met is stressful, and many UMs live in constant fear of disclosure and deportation, all of which has a detrimental effect of the mental health. It is important to understand both associated risk factors for ill-health and coping strategies in this vulnerable population in order try to reduce ongoing stress.
Risk of childhood psychiatric disorders in children of refugee parents with post-traumatic stress disorder: a nationwide, register-based, cohort study
Maj Back Nielsen, Jessica Carlsson, Martin Køster Rimvall, Jørgen Holm Petersen, Marie Norredam
(2019)
Background Children of refugees are often exposed to the consequences of parental post-traumatic stress disorder (PTSD), potentially leaving them vulnerable to intergenerational transmission of psychopathology. The present study aimed to determine whether parental PTSD is associated with childhood psychiatric morbidity among children of refugees.
Methods This study is a two-generation nationwide cohort study using the Danish Immigration Services database. We followed up children younger than 18 years with at least one refugee parent until psychiatric contact, end of the study, their 18th birthday, emigration, or death. We excluded children if their parents were diagnosed only with psychiatric diagnoses other than PTSD or if they had received a psychiatric contact before parental PTSD diagnosis.
Information on parental PTSD and offspring psychiatric morbidity was obtained from the Danish Psychiatric Central Research Register. We used Cox proportional hazards regression models to assess the risk of psychiatric contacts among children of refugees with PTSD compared with children of refugees with no psychiatric diagnosis.
Findings Between Jan 1, 1995, and Dec 31, 2015, 102010 refugees obtained residency permission in Denmark and 62 239 biological children of refugees were born in Denmark before Dec 31, 2015. 51793 were eligible and included in the study (median follow-up 7·15 years [IQR 3·37–11·78]); of these, 1307 (2·5%) children had a psychiatric contact. 7486 (14·5%) children of refugees were exposed to parental PTSD. Parental PTSD significantly increased the risk of
psychiatric contact in offspring (hazard ratio 1·49 [95% CI 1·17–1·89] for paternal PTSD, p=0·0011; 1·55 [1·20–2·01] for maternal PTSD, p=0·00084) after adjustment for sociodemographic variables.
Om barn och sorg: en handbok
Atle Dyregrov, Martin Lytje
(2022)
För ett barn som tvingas uppleva ett dödsfall eller livshotande sjukdom hos en nära anhörig, förändras livet för alltid. Avgörande för barnets fortsatta psykiska hälsa är att det finns vuxna i närheten som förmår att ge rätt stöd. Syftet med denna bok är att den ska fungera som en handbok för professionella och anhöriga runt barnet.
I Att möta barns sorg – en handbok beskrivs hur skilda typer av förluster ger olika konsekvenser, både på kort och längre sikt. Vanliga sorgereaktioner och hanteringsstilar skildras, och hur sorgen förändras över tid. Boken tar också upp hur ett barns utvecklingsnivå påverkar dennes förståelse av sorg. I egna kapitel behandlas
• katastrofer, terror och barns sorg
• komplicerad sorg av rigid art som varar under lång tid
• att arbeta med familjer i sorg
• skolans stöd i sorgearbetet
• terapeutiskt arbete med barn i komplicerad sorg.
I boken ges konkreta råd om hur du som professionell eller anhörig kan stödja barnet; i hemmet, i skolan och i barnets andra relationer.
Leva som andra och vara delaktiga i samhället: Information om LSS
Socialstyrelsen
(2024)
Delaktighet, tillgänglighet, inflytande, självbestämmande, att få leva som
andra. Det är grundläggande principer i både svensk funktionshinderspolitik
och i lagen (1993:387) om stöd och service till vissa funktionshindrade,
LSS. Som beslutsfattare har du både ett stort ansvar och möjligheter att
förvalta dessa principer och omsätta dem i praktiken. Det är när insatser
beslutas och planeras och i mötet med den enskilde individen som
målsättningarna i funktionshinderpolitiken och i LSS kan förverkligas.
Publikationen finns som pdf på Socialstyrelsens webbplats.
Variability in perceived burden and health trajectories among older caregivers: a population-based study in Sweden
Mariam Kirvalidze, Giorgi Beridze, Anders Wimo, Lucas Morin, Amaia Calderón-Larrañaga
(2023)
Background: The negative effects of informal caregiving are determined by the characteristics of the caregiver-care receiver dyad and the context of care. In this study, we aimed to identify which subgroups of older informal caregivers (1) experience the greatest subjective burden and (2) incur a faster decline in objective health status.
Methods: From a total of 3363 older participants in the Swedish National study on Aging and Care in Kungsholmen (SNAC-K), we identified 629 informal caregivers (19.2%, mean age 69.9 years). Limitations to life and perceived burden were self-reported, and objective health status was quantified using the comprehensive clinical and functional Health Assessment Tool (HAT) score (range: 0-10). Ordered logistic regressions and linear mixed models were used to estimate the associations between caregiving-related exposures and subjective outcomes (cross-sectionally) and objective health trajectories (over 12 years), respectively.
Results: Having a dual role (providing and receiving care simultaneously), caring for a spouse, living in the same household as the care receiver and spending more hours on caregiving were associated with more limitations and burden. In addition, having a dual role (β=-0.12, 95% CI -0.23 to -0.02) and caring for a spouse (β=-0.08, 95% CI -0.14 to -0.02) were associated with a faster HAT score decline. Being female and having a poor social network were associated with an exacerbation of the health decline.
Conclusions: Both the heterogeneity among caregivers and the related contextual factors should be accounted for by policymakers as well as in future research investigating the health impact of informal caregiving.
Ensamhet bland äldre partnervårdare: En översikt över aktuell kvantitativ och kvalitativ forskning
Lena Dahlberg, Mariam Kirvalidze
(2024)
En stor del av den informella omsorgen ges av en partner till omsorgstagaren, som kan behöva stöd på grund av åldersrelaterade sjukdomar eller funktionsnedsättningar. Partnervårdare är ofta äldre själva och omsorgen kan ha negativa effekter på deras hälsa och välbefinnande. Samtidigt har ensamhet fått mer uppmärksamhet i forskningen som en viktig faktor för hälsa och välbefinnande, och ensamhet har även lyfts på den politiska agendan. I den här rapporten undersöks sambandet mellan partnervård och ensamhet hos personer i åldern 65 år och äldre, vilka faktorer som ökar risken för ensamhet i denna grupp, konsekvenser av ensamhet, och hur de själva upplever ensamhet.
Vem hjälper den som hjälper? : att vara anhörig till någon med psykisk ohälsa
Nelson Martina
(2024)
Att leva nära någon med psykisk ohälsa kan vara förknippat med oro, smärta och maktlöshet. Är det möjligt att själv må bra om ens förälder, syskon, barn eller partner mår dåligt? Som anhörig är det lätt att ta på sig andras smärta och lägga allt ansvar på sig själv. Men den som är anhörig behöver också få utrymme att hantera sina känslor och reaktioner. Hur ska man veta när har man gjort tillräckligt och när behöver man släppa taget?
Ungefär var fjärde svensk lider någon gång i livet av psykisk ohälsa vilket betyder många drabbade anhöriga. I den här boken varvas aktuell forskning med strategier för att minska stress, oro och hantera känslor av skuld och skam. Kom ihåg att du behöver ta hand om dig själv för att orka vara stöd åt någon annan.
Försvinner och stannar kvar
Jenny Eriksson
(2017)
Jenny Eriksson var 10 år när hennes pappa fick en demenssjukdom. Det här är hennes berättelse om hur livet kan bli när hjärnan inte fungerar. Om ångest, utmattningssyndrom och Alzheimers sjukdom. En dag går det inte att äta själv längre men själen fortsätter ändå att dansa disco. Försvinner och stannar kvar är Jennys självbiografiska debutroman.
Unga anhöriga berättar
Svenskt Demenscentrum
(2021)
För dig som har en förälder med demenssjukdom
Intervjuer · Tips · Fakta
Har du en förälder med demenssjukdom och känner dig ensam i din situation? Då är den här boken för dig. Du kommer att inse att du faktiskt inte är så ensam som du kanske tror. I själva verket finns det tusentals tonåringar och unga vuxna som går igenom precis samma sak som du – som inte alltid får rätt hjälp, lätt blir missförstådda av omgivningen och som kanske mår ganska dåligt. Att vara ung och anhörig till någon som har alzheimer eller någon annan typ av demenssjukdom innebär påfrestningar i vardagen som många utomstående inte riktigt förstår, så förmodligen kommer du att känna igen dig i några av bokens berättelser. Andra unga anhöriga, som varit där du är nu, ger värdefulla tips. Många unga anhöriga vittnar om hur svårt de tycker det är att hitta rätt inom vården och omsorgen. Den här boken hjälper dig förhoppningsvis en bit på vägen. Du kan bland annat läsa om vilket stöd du som anhörig kan få, viktiga dokument att ordna med, lagar och regler samt inte minst fakta om de olika demenssjukdomarna. Kunskap är nyckeln till att förstå det som händer din förälder. Dessutom svarar en expertpanel på några vanliga frågor som kan dyka upp. Den här boken kan med fördel också läsas av vård- och omsorgspersonal, skolkuratorer, lärare, tjänstemän, makthavare och andra med inflytande över de förutsättningar som ges en utsatt grupp unga människor. Så här uppfattar de sin situation.
Detta är den verklighet de lever i.
Video Conferencing With Residents and Families for Care Planning During COVID-19: Experiences in Canadian Long-Term Care
Connelly D, Hay M, Garnett A, Hung L, Yous ML, Furlan-Craievich C, Snelgrove S, Babcock M, Ripley J, Snobelen N, Gao H, Zhuang R, Hamilton P, Sturdy-Smith C, O'Connell M
(2023)
Background and objectives: Government-mandated health and safety restrictions to mitigate the effects of coronavirus disease 2019 (COVID-19) intensified challenges in caring for older adults in long-term care (LTC) without family/care partners. This article describes the experiences of a multidisciplinary research team in implementing an evidence-based intervention for family-centered, team-based, virtual care planning-PIECESTM approach-into clinical practice. We highlight challenges and considerations for implementation science to support care practices for older adults in LTC, their families, and the workforce.
Research design and methods: A qualitative descriptive design was used. Data included meetings with LTC directors and Registered Practical Nurses (i.e., licensed nurse who graduated with a 2-year diploma program that allows them to provide basic nursing care); one-on-one interviews with family/care partners, residents, Registered Practical Nurses, and PIECES mentors; and reflections of the academic team. The Consolidated Framework for Implementation Research provided sensitizing constructs for deductive coding, while an inductive approach also allowed themes to emerge.
Results: Findings highlighted how aspects related to planning, engagement, execution, reflection, and evaluation influenced the implementation process from the perspectives of stakeholders. Involving expert partners on the research team to bridge research and practice, developing relationships from a distance, empowering frontline champions, and adapting to challenging circumstances led to shared commitments for intervention success.
Discussion and implications: Lessons learned include the significance of stakeholder involvement throughout all research activities, the importance of clarity around expectations of all team members, and the consequence of readiness for implementation with respect to circumstances (e.g., COVID-19) and capacity for change.
Navigating the care system: A guide for providers to help family caregivers
Coleman, B.,
(2004)
Navigeringskurs för anhöriga till personer med demenssjukdom. En utvärdering av ett projekt på Dalens minnesmottagning. Rapport 2013:6.
Sonde, L., & Gurner, U.
(2013)
Anhörigkonsulenterna i stadsdelarna Enskede-Årsta-Vantör, Farsta, Skarpnäck
och Södermalm, tillsammans med minnesmottagningen vid Capio geriatrik på
Dalens sjukhus, genomförde under hösten 2012 en navigeringskurs för anhöriga.
Målgruppen var anhöriga till personer som nyligen genomgått en minnesutredning.
Syftet med kursen var att ge deltagarna kunskaper om demenssjukdomar
och information om vilka resurser kommun och landsting har för att möta upp de
drabbades och anhörigas behov.
Navigeringskursen gavs som en föreläsningsserie vid sju tillfällen på torsdagseftermiddagar.
Varje tillfälle varade ungefär 90 minuter och genomfördes i minnesmottagningens
lokaler. I navigeringskursen gavs information om demenssjukdomar,
kognition och bemötande, hjälpmedel, krisbearbetning samt om kommunens
stöd till anhöriga.
Stiftelsen Stockholms läns Äldrecentrum fick ett uppdrag att undersöka om navigeringskursen
tillför anhöriga användbar kunskap och ger dem en bättre navigeringsförmåga
i den vård och omsorg som erbjuds.
Undersökningen genomfördes med hjälp av intervjuer med deltagare och anordnare
före och efter navigeringskursen, samt med deltagarna sex månader efter
kursens avslut.
Deltagarna uppskattade navigeringskursen. En majoritet trodde att kursen gjort
dem bättre rustade att möta framtida utmaningar. Att kursen vände sig till både
barn, barnbarn och vänner förutom make/maka var också uppskattat. Samtidigt
var både deltagarna och anordnarna överrens om att navigeringskursen kan och
bör utvecklas.
För kursansvariga är det viktigt att rikta fokus på att för att kunna navigera behöver
anhöriga, förutom kunskap om själva sjukdomen, hjälpmedel och bemö-
tande, även kunskap om hur den vård och omsorgssituation ser ut som de ska
navigera i efter det att minnesutredningen är klar.
I rapporten ges ett antal förslag till förbättring och utveckling av navigeringskursen.
För att öka antalet deltagare bör ett formaliserat erbjudande om kursen ges
till samtliga anhöriga i samband med utskrivning från minnesmottagningen.
Kurstiderna behöver anpassas till förvärvsarbetande anhöriga som nu har svårt
att komma ifrån arbetet. Ett kurskompendium bör tas fram för att hålla informationen
aktuell. Föreläsarskaran behöver breddas utanför kretsen anhörigkonsulenter
och personal från minnesmottagning, t.ex. primärvård, biståndshandläggare
och ansvariga från dagvårdverksamheter, hemtjänst och särskilt boende.
Need for Support and participation in treatment differencies among subgroups of relatives to compulsory and voluntarily admitted mentally ill individuals
Östman, Margareta & Hansson, Lars
(1999)
The need for support and participation in treatment of relatives to voluntarily and compulsorily admitted patients was addressed in a study of the quality of mental health services in two Swedish county councils. The aims of the study were to investigate differences in the above aspects between subgroups of relatives, the differences between two years of investigation, 1986 and 1991, and the differences between relatives of voluntarily and compulsorily admitted patients. The relatives investigated consisted of 79 spouses, 118 parents and 31 grown-up children. The results showed that there were only minor differences between the subgroups concerning their participation in care. Grown-up children experienced significantly less need of support and received less help for this need. In 1991, relatives participated more in the care situation, were more interested in support with regard to their own life situation, and also showed more positive attitudes towards the psychiatric services than in 1986. The relatives of the voluntarily admitted patients felt more involved in the patient's treatment, whereas the relatives of those compulsorily admitted felt less involved and perceived obstacles to admission.
Needs of elderly patients in palliative care
Wijk H, Grimby A.
(2008)
A pilot study on elderly patients' end-of-life needs was performed at a Swedish geriatric palliative ward. Thirty patients (15 men and 15 women; mean age, 79 years) with a primary diagnosis of cancer and admitted for palliative care were interviewed by a nurse using semistructured interviews. The study included demographic data, physical and psychologic status, and naming and ranking of individual needs. Elimination of physical pain was ranked as the primary need of half of the patients. Only when pain was eliminated or absent did other important needs (psychological, social, spiritual) appear frequently.
Neglected victims of murder: children’s witness to parental homicide
Burman, S., & Allen-Meares, P.
(1994)
Abstract
Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.
Neglected victims of murder: children’s witness to parental homicide
Burman, S. & Allen-Meares, P.
(1994)
Children who witness parental homicides are emotionally traumatized, stigmatized, and deeply scarred by a terrifying event. They often exhibit debilitating symptoms comparable to those of posttraumatic stress disorder. As attention is focused on the deceased and on the perpetrator of the crime, the child witnesses inadvertently become the neglected victims. A case report of two such children who observed their mother being murdered by their father is presented. Theories of psychosocial development and social learning guided the assessment and intervention phases. Behavioral and expressive therapeutic treatment strategies that helped the children work through the resultant anxiety and underlying grief are delineated, and family intervention practices that served to improve interaction and communication patterns are described. Further discussion focuses on the potential intergenerational cycle of violence and on a sociocultural perspective of family violence within an ecological framework.
Negotiating Childhood
Solberg, Anne
(1994)
Negotiating lay and professional roles in the care of children with complex health care needs
Kirk, Susan
(2001)
eywords:
parental involvement;children with complex health care needs;role negotiation;nursing roles;community-based care
Negotiating lay and professional roles in the care of children with complex health care needs
Background. Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).
Aims of the paper. To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.
Design. Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.
Findings. From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.
Conclusion. This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent–professional relationships that are characterized by conflict rather than partnership.
Negotiating needs : processing older persons as home care recipients in gerontological social work practices
Olaison, A.
(2009)
The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.
Negotiating needs : processing older persons as home care recipients in gerontological social work practices
Olaison, A.
(2009)
The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.
Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices
Olaison, A.
(2009)
The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.
Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices.
Olaison, A.
(2009)
Studien tar sin utgångspunkt i de bedömningsprocesser äldre personer genomgår för att få tillgång till hjälp i hemmet. Bedömningsprocessen där äldre, deras anhö-riga och kommunala behovsbedömare deltog studerades ur ett kommunikativt perspektiv. Interaktionen vid behovsbedömningssamtalet fungerar som en pro-blemlösningsprocess. Den äldre personens redogörelse för behov förhandlas diskursivt i interaktionen och tre olika berättelselinjer identifierades, baserade på om de sökande betraktar hemtjänsten som ett intrång, som ett komplement och stöd eller som en rättighet. När olika åsikter uttrycks har de äldre sista ordet i enlighet med Socialtjänstlagens föreskrifter. En slutsats är att de anhörigas roll i behovsbedömningsprocessen inte är definierad och att ett familjeperspektiv sak-nas. I studien analyserades också bedömningsprocessens institutionella struktur. De äldre behovssökande processas till att bli klienter, deras behov anpassas till dokumentationens ramverk och kategoriseras i enlighet med institutionella kate-gorier. I transfereringen av tal till text redovisas inte samtliga element i samtalet. Två typer av utredningstext identifierades, den faktaorienterade och den händelse-orienterade. I studien diskuteras det marknadsekonomiska tänkande som kommit att påverka bedömningsprocessen genom byråkratisering vilket står i motsatsställ-ning till det individcentrerade perspektiv som lagen förespråkar. Introduktionen av marknadsmodeller i det gerontologiska sociala arbetet har medfört en inbyggd motsättning och utgör ett välfärdspolitiskt dilemma. Förbättrade kommunikativa metoder behövs för att uppnå en holistisk bedömningsprocess.
Neonatal Behavior Assessment Scale (2d ed.),
BRAZELTON, T. B.
(1984)
Nere för räkning, eller ... : om livet med ett svårt sjukt barn
Jansson Eva
(2011)
Den här boken handlar om en familj med ett svårt hjärnskadat barn och två friska småsyskon. Boken beskriver deras nioåriga resa. Vi får följa och lära oss om en liten men viktig grupp barn, känna ilska och sorg men också mycket hopp, glädje och stolthet. Vi följer familjens vardag i motgång och medgång. Kampen för en så bra vård som möjligt och ett innehållsrikt liv för den svårt hjärnskadade dottern. Vi får ta del av syskonens och föräldrarnas känslor och får en inblick i hur det är att leva med assistenter i hemmet under dygnets alla timmar. Boken berör många områden och det märks att författaren har fått möta mycket under åren.
Läs och upplev hur någonting som från början ser mycket mörkt ut blir allt ljusare. En stark och engagerande bok med fokus på möjligheter.
Men do care! A gender-aware and masculinity-informed contribution to caregiving scholarship.
Wallroth, V.
(2016)
In caregiving literature, it is often the female gender that has been the focus of attention,
and in particular women's unpaid labor. Studies also tend to make comparisons
between men's and women's caregiving, using men's caregiving experiences to show
not only that women face greater burdens, but also that men's needs can be disregarded.
This means that while gender analyses are not uncommon in the caregiving literature,
gender tends to be equated with womanhood. The research problem that this dissertation
addresses is therefore the gender bias that characterizes caregiving scholarship
at present and the fact that this bias is impeding us from moving the debates on
care and caregiving forward. The aim of the dissertation is twofold. Firstly, it attempts
to contribute to the rectification of the gender bias in question by focusing on men's
caregiving and answering the following research questions: What motivates men to
provide care for their elderly parents? How do adult sons experience caregiving? What
do adult sons think that care and caregiving are, i.e. what are their perspectives on
care? Secondly, this dissertation also aims to explore whether a gender-aware and
masculinity-informed perspective can be used to enhance our understanding of caregiving.
Thus, through a phenomenological analysis of interviews with 19 caregiving
adult sons and sons-in-law, this dissertation discusses how motives, experiences and
perspectives, which have so far been interpreted as unique to women, are also matters
that men talk about and consider important in caregiving. The dissertation argues
therefore that much could be gained if we were to rectify the gender bias that characterizes
the literature on family caregiving and explore caregiving men in the genderaware
and masculinity-informed way that is lacking in this literature at present. Inspired
by the debate within studies of masculinity, the dissertation argues that within
the debate on care there is a hegemony of care which has so far tended to exclude
men's perspectives on caregiving because literature on family caregiving has regarded
women as the ideal caregivers. This dissertation shows that a gender-aware and masculinity-informed
perspective on care can increase our understanding of family caregiving
and contribute to the rectification of the gender bias that care research suffers
from. Against this backdrop, it is proposed that caregiving men should not solely be
regarded as empirically interesting. This is because they are an unexploited and theoretically
profuse source of information about caregiving.
Keywords: care, family caregiving, gender, men, masculinity, motive, experience, perspective
Men hur mår du själv? : om stöd till dem som vårdar anhöriga.
Sjöberg, M, (red).
(2001)
Men’s violence against women: a challenge in antenatal care
Stenson, K.
(2004)
Men's violence against women is a universal issue affecting health, human rights and gender-equality. In pregnancy, violence is a risk for both the mother and her unborn child.The overall aims were: to determine the prevalence of such violence in a Swedish pregnant population, to investigate pregnant women's attitudes to questioning about exposure to violence, and to evaluate experience gained by antenatal care midwives having routinely questioned pregnant women regarding violence.All women registered for antenatal care in Uppsala, Sweden, during 6 months were assessed regarding acts of violence. The Abuse Assessment Screen (AAS) was used twice during pregnancy and again after delivery when the women were asked an open-ended written question regarding attitudes to questioning about violence. Midwives' experiences regarding routine assessment were evaluated in focus group discussions.The AAS questions were answered by 93% (1,038) of those eligible. Physical abuse by a partner or relative during or shortly after pregnancy was reported by 1.3%, and by 2.8% when the year preceding pregnancy was included. Lifetime sexual abuse was reported by 8.1%. Repeated questioning increased the abuse detection rate. Abused women reported more previous ill-health, and women physically abused during pregnancy more pregnancy terminations than did non-abused women. Abuse assessment was found entirely acceptable by 80%, both acceptable and unacceptable/disagreeable by 5% and solely unacceptable/ disagreeable by 3%, while 12% were neural. Abused and non-abused women did not differ regarding disinclination to answer the abuse questions. According to the midwives the delicacy of the subject and the male partners' presence were the most prominent remaining obstacles to routine determination of violence. Routines are required to make questioning about violence an integral part of antenatal care. This would necessitate a private appointment for the woman, knowledge among care providers about the nature of men's violence, and awareness of referral options.
”Det borde vara kramar på recept” – en utvärdering av den enskildes inflytande i vård- och stödsituationer inom ramen för Positiv-projektet, Stockholms län
Bromark, Kristina
(2011)
Manual for the Beck depression inventory
Beck, A.T., Steer, R.A. & Brown, G.K.
(1996)
Manual for the Child Behavior Checklist/4-18 and 1991 profile
Achenbach, T. M.
(1991)
Manual for the Child Behavioral Checklist 4-18 and revised 1991 profile.
Achenbach TM
(1991)
Purpose
To obtain caregiver report of children's competencies and behavior problems in a standardized format.
Conceptual Organization
The Child Behavior Checklist/4-16 (CBCL/4-16) was the first of what has become a multi-axial
empirically based set of measures for assessing children from parent, teacher, and self-reports. In 1991,
The CBCL/4-16 was re-normed to include children up to 18 years of age (becoming CBCL/4-18), and
eight cross-informant constructs were identified to facilitate direct comparison between problem
behavior scores on the CBCL, the Teacher Report Form (TRF), and the Youth Self-Report Form (YSR)
(Achenbach, 1991). All three instruments include measurement of the following eight constructs or
syndromes: Social Withdrawal, Somatic Complaints, Anxiety/Depression, Social Problems, Thought
Problems, Attention Problems, Delinquent Behavior, and Aggressive Behavior. The CBCL is the only
measure among the three instruments that contains the Sex Problems scale (Achenbach, 1991).
In addition to focusing on a child's behavior as defined by one of the eight syndrome scales, the CBCL,
TRF, and YSR also allow the examination of two broad groupings of syndromes: Internalizing Problems
and Externalizing Problems. Internalizing Problems combines the Social Withdrawal, Somatic
Complaints, and Anxiety/Depression scales, while Externalizing problems combines the Delinquent
Behavior and Aggressive Behavior scales (Achenbach, 1991).
The three corollary instruments also contain items that assess social competence. The CBCL/4-18
contains 20 competence items grouped into 3 scales (Activities, Social, and School) (Achenbach, 1991).
Item Origin/Selection Process
Items were derived from research and consultation with professionals and parents, and revisions were
based on the findings of numerous pilot studies. For a complete description of item derivation for the
CBCL, see the Manual for the Child Behavior Checklist/4-18 and 1991 Profile (hereafter referred to as
the Manual) (Achenbach, 1991).
Materials
Manual, forms, and computerized scoring programs, available from the publisher.
Time Required
Twenty-five to thirty minutes.
Administration Method
The CBCL is designed to be completed independently by the caregiver. It requires fifth grade reading
ability. The form can also be administered orally by an interviewer who records the caregiver's answers.
There are several items for which the respondent is asked to elaborate about an endorsed behavior in
order to avoid improper scoring.
Training
Requires thorough familiarity with the Manual, especially with the cautions related to commonly
misinterpreted items (Manual, p. 13, pp. 249-250). Please see the Manual for additional information on
training and educational requirements.
Scoring
Score Types
Items are coded from 0 to 2. Instructions for hand scoring the instrument are provided in Appendix A
of the Manual.
Total scores may be computed for Social Competence, Behavior Problems, Internalizing Problems,
Externalizing Problems, and Sex Problems, plus scores for each of the 8 syndrome scales (Achenbach,
1991)
Raw scores can be converted to age-standardized scores (T scores having a mean = 50 and SD = 10) that
can be compared with scores obtained from normative samples of children within the same broad age
range. Please see the Manual for more information on CBCL scores.
Score Interpretation
For the syndrome scales, T scores less than 67 are considered in the normal range, T scores ranging from
67-70 are considered to be borderline clinical, and T scores above 70 are in the clinical range
(Achenbach, 1991) Please see the Manual for additional information on specific syndrome scales
For Total Problems, Externalizing Problems, and Internalizing Problems, T scores less than 60 are
considered in the normal range, 60-63 represent borderline scores, and scores greater than 63 are in the
clinical range (Achenbach, 1991).
Norms and/or Comparative Data
The CBCL/4-18 was normed on a sample of 2,368 non-handicapped 4 to 18 year old children. See
Manual for additional information on norms and comparative data. .
Psychometric Support
Reliability
Information on test-retest reliability and Cronbach's alphas are available from the author (Achenbach,
1991).
Validity
Evidence for content, construct, and criterion-related validity is well documented. See Chapter 6 in
Manual for additional details.
Manual for the young adult self-report and young adult behavioral checklist
Achenbach, T.M.
(1997)
The YABCL has 107 items that describe specific behavioral and emotional problems. Parents and others rate the young adult for how true each item is now or was within the past six months using the following scale: 0 = not true (as far as you know); 1 = somewhat or sometimes true; 2 = very true or often true. In addition, 13 socially desirable items are rated, and space is also provided for responses to two open-ended items covering physical and other problems, plus anything else the respondent wants to report about the young adult. These questionnaires are designed to provide standardized descriptions of behavior, feelings, thoughts, and competencies rather than diagnoses per se. The YABCL has 109 problem items and 11 competence items that are scored on 3-step scales. Eight syndromes are derived from the items on the YABCL, including 2 designated as Internalizing (Anxious/Depressed, Withdrawn) and 3 designated as Externalizing (Aggressive, Delinquent, and Intrusive Behavior). Reliability on the YABCL averages 0.85 across syndromes and Internalizing, Externalizing, and Total Problems scales (P .001). Validity has been demonstrated by showing significantly higher scores for subjects referred for mental health services than for matched nonreferred subjects.36-38 For the 8 syndrome scales, the 95th percentile is considered the borderline clinical cutoff and the 98th percentile the clinical cutoff on the basis of a nonreferred population. For the problem scales (Internalizing, Externalizing, and Total Problems), the 83rd percentile is considered the borderline clinical cutoff and the 90th percentile the clinical cutoff.33.
Manual för ICAIP – Individual coping and alcohol intervention program
Hansson, H., & Zetterlind, U.
(2000)
Manual of the General Health Questionnaire (SDQ).
Goldberg DP.
(1978)
Mapping images to objects by young adults with cognitive disabilities.
Carmien, S. & Wohldman E.
(2008)
How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.
Marital satisfaction and resilience in caregivers of spouses with dementia
Fitzpatrick, K. E., & Vacha-Haase, T.
(2010)
Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences
Meagher G, Szebehely M, editors
(2013)
The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.
Marte Meo – en hållbar intervention? En beskrivning av det observerbara och icke observerbara i en utvärdering av behandlingsmodellen Marte Meo inom socialtjänsten
Hettrel, Camilla & Lindqvist, Agneta
(2006)
Masculine gender roles associated with increased sexual risk and intimate partner violence perpetration among young adult men
Santana, M. C., Raj, A., Decker, M. R., Marche, A. L., & Silverman, J. G.
(2006)
This study sought to assess the association between traditional masculine gender role ideologies and sexual risk and intimate partner violence (IPV) perpetration behaviors in young men's heterosexual relationships. Sexually active men age 18–35 years attending an urban community health center in Boston were invited to join a study on men's sexual risk; participants (N=307) completed a brief self-administered survey on sexual risk (unprotected sex, forced unprotected sex, multiple sex partners) and IPV perpetration (physical, sexual and injury from/need for medical services due to IPV) behaviors, as well as demographics. Current analyses included men reporting sex with a main female partner in the past 3 months (n=283). Logistic regression analyses adjusted for demographics were used to assess significant associations between male gender role ideologies and the sexual risk and IPV perpetration behaviors. Participants were predominantly Hispanic (74.9%) and Black (21.9%); 55.5% were not born in the continental U.S.; 65% had been in the relationship for more than 1 year. Men reporting more traditional ideologies were significantly more likely to report unprotected vaginal sex in the past 3 months (ORadj = 2.3, 95% CI = 1.2–4.6) and IPV perpetration in the past year (ORadj = 2.1, 95% CI = 1.2–3.6). Findings indicate that masculine gender role ideologies are linked with young men's unprotected vaginal sex and IPV perpetration in relationships, suggesting that such ideologies may be a useful point of sexual risk reduction and IPV prevention intervention with this population.
Mastering an unpredictable everyday life after stroke'- older women's experiences of caring and living with their partners
Gosman-Hedström, G. and S. Dahlin-Ivanoff
(2012)
Scand J Caring Sci; 2012; 26; 587-597 'Mastering an unpredictable everyday life after stroke'- older women's experiences of caring and living with their partners Introduction: The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce. Aim: To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications. Method: The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours. Findings: The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves. Conclusion: This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
Mastering an unpredictable everyday life after stroke´ - older women´s experiences of caring and living with their partners
Gosman-Hedström, G., & Dahlin-Ivanoff, S.
(2012)
INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
Maternal Depressive Symptoms when Caring for a Child with Mental Health Problems
Gerkensmeyer J, Perkins S, Day J, Austin J, Scott E, Wu J.
(2011)
As primary caregivers of children with mental health problems, mothers face challenges that put them at risk for depression, which is rarely identified or addressed. The aims of this paper were to (a) identify mean differences among demographic, stressor, threat, and resource variables specified in a theoretical model and thought to be associated with maternal depressive symptoms and (b) determine how much variability in depressive symptoms is explained by these variables. High levels and prevalence of depressive symptoms were found within a quality of life study that these data were drawn from. Of 139 mothers participating in this study, 58% had a score of 16 or greater on the CES-D indicating moderate to high levels of depressive symptoms. Significant differences were found between mothers with higher versus lower levels of depressive symptoms for 11 of the 18 variables. Hierarchical regression was used to examine the variance explained in depressive symptoms based upon the conceptual model with 4 composite variables. Income (step 1), behavioral problems (step 2), threat appraisal (step 3), and resource appraisal (step 4) combined explained 42% of the variance.
Maternal parenting behaviors and adolescent depression: The mediating role of rumination
Gaté, M. A., Watkins, E. R., Simmons, J. G., Byrne, M. L., Schwartz, O. S., Whittle, S., et al.
(2013)
Substantial evidence suggests that rumination is an important vulnerability factor for adolescent depression. Despite this, few studies have examined environmental risk factors that might lead to rumination and, subsequently, depression in adolescence. This study examined the hypothesis that an adverse family environment is a risk factor for rumination, such that the tendency to ruminate mediates the longitudinal association between a negative family environment and adolescent depressive symptoms. It also investigated adolescent gender as a moderator of the relationship between family environment and adolescent rumination. Participants were 163 mother–adolescent dyads. Adolescents provided self-reports of depressive symptoms and rumination across three waves of data collection (approximately at ages 12, 15, and 17 years). Family environment was measured via observational assessment of the frequency of positive and aggressive parenting behaviors during laboratory-based interactions completed by mother-adolescent dyads, collected during the first wave. A bootstrap analysis revealed a significant indirect effect of low levels of positive maternal behavior on adolescent depressive symptoms via adolescent rumination, suggesting that rumination might mediate the relationship between low levels of positive maternal behavior and depressive symptoms for girls. This study highlights the importance of positive parenting behaviors as a possible protective factor against the development of adolescent rumination and, subsequently, depressive symptoms. One effective preventive approach to improving adolescent mental health may be providing parents with psychoeducation concerning the importance of pleasant and affirming interactions with their children. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Maternal report on child outcome after a community-based program following intimate partner violence
Grip, K., Almqvist, K., & Broberg, A. G.
(2012)
Abstract
BACKGROUND:
This study examined the perceived effectiveness of a 15-week community-based program for 46 children exposed to intimate partner violence (IPV) and their mothers.
AIMS:
The primary aims were to describe the children who entered one of the existing community-based programs in terms of behavioral problems and to evaluate the impact of the program on children's general behavioral functioning as assessed by their mothers.
RESULTS:
Children's rated behavioral problems (SDQ) dropped following treatment; the effect size was in the medium range. The social impairment caused by the problems decreased as well. The effect regarding behavioral problems was not related to the degree of exposure to IPV or the mothers own changes in trauma symptoms following treatment. Results were analyzed as well at the individual level with the Reliable Change Index (RCI), which showed that the majority of children were unchanged following treatment.
CONCLUSIONS:
One implication from the study is the need for baseline screening and assessment. About half of the current sample had a clinical symptom picture indicating the need for specialized psychiatric/psychotherapeutic treatment. Furthermore, the reduction in behavioral problems was significant but many children still had high levels of behavioral problems after treatment, indicating a need of a more intense or a different type of intervention.
Maternal Unresolved Attachment Status Impedes the Effectiveness of Interventions With Adolescent Mothers
MORAN, G., PEDERSON, D. R. & KRUPKA, A.
(2005)
Children of adolescent mothers are at risk for a variety of developmental difficulties. In the present study, the effectiveness of a brief intervention program designed to support adolescent mothers' sensitivity to their infants' attachment signals was evaluated. Participants were adolescent mothers and their infants who were observed at 6, 12, and 24 months of age. The intervention conducted by clinically trained home visitors consisted of eight home visits between 6 and 12 months in which mothers were provided feedback during the replay of videotaped play interactions. At 12 months, 57% of the mother–infant dyads in the intervention group and 38% of the comparison group dyads were classified as secure in the Strange Situation. Seventy-six percent of the mothers in the intervention group maintained sensitivity from 6 to 24 months compared with 54% of the comparison mothers. Further analyses indicated that the intervention was effective primarily for mothers who were not classified as Unresolved on the Adult Attachment Interview.
Measurement of time processing ability and daily time management in children with disabilities
Janeslätt G, Granlund M.
(2009)
Background
Improvement is needed in methods for planning and evaluating interventions designed to facilitate daily time management for children with intellectual disability, Asperger syndrome, or other developmental disorders.
Objectives
The aim of this study was to empirically investigate the hypothesized relation between children's time processing ability (TPA), daily time management, and self-rated autonomy. Such a relationship between daily time management and TPA may support the idea that TPA is important for daily time management and that children with difficulties in TPA might benefit from intervention aimed at improving daily time management.
Methods
Participants were children aged 6 to 11 years with dysfunctions such as attention-deficit/hyperactivity disorder, autism, or physical or intellectual disabilities (N = 118). TPA was measured with the instrument KaTid. All data were transformed to interval measures using applications of Rasch models and then further analysed with correlation and regression analysis.
Results
The results demonstrate a moderate significant relation between the parents' ratings of daily time management and TPA of the children, and between the self-rating of autonomy and TPA. There was also a significant relation between self-ratings of autonomy and the parents' rating of the children's daily time management. Parents' ratings of their children's daily time management explain 25% of the variation in TPA, age of the children explains 22%, while the child's self-rating of autonomy can explain 9% of the variation in TPA. The three variables together explain 38% of the variation in TPA. The results indicate the viability of the instrument for assessing TPA also in children with disabilities and that the ability measured by KaTid is relevant for daily time management.
Conclusions
TPA seems to be a factor for children's daily time management that needs to be taken into consideration when planning and evaluating interventions designed to facilitate everyday functioning for children with cognitive impairments. The findings add to the increasing knowledge base about children with time processing difficulties and contribute to better methods aimed at improving these children's daily time management. Further research is needed to examine if there are differences in TPA related to specific diagnosis or other child characteristics.
Measures used to assess burden among caregivers of stroke patients: a review
Visser-Meily JM, Post MW, Riphagen, II, Lindeman E.
(2004)
Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties.
Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness.
Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures.
Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.
Measuring children's participation in recreation and leisure activities: construct validation of the CAPE and PAC
King G, Law M, King S, Hurley P, Hanna S, Kertoy M, et al.
(2007)
There is a need for psychometrically sound measures of children's participation in recreation and leisure activities, for both clinical and research purposes. This paper provides information about the construct validity of the Children's Assessment of Participation and Enjoyment (CAPE) and its companion measure, Preferences for Activities of Children (PAC). These measures are appropriate for children and youth with and without disabilities between the ages of 6 and 21 years. They provide information about six dimensions of participation (i.e. diversity, intensity, where, with whom, enjoyment and preference) and two categories of recreation and leisure activities: (i) formal and informal activities; and (ii) five types of activities (recreational, active physical, social, skill-based and self-improvement). This paper presents information about the performance of the CAPE and PAC activity type scores using data from a study involving 427 children with physical disabilities between the ages of 6 and 15 years. Intensity, enjoyment and preference scores were significantly correlated with environmental, family and child variables, in expected ways. Predictions also were supported with respect to differences in mean scores for boys vs. girls, and children in various age groups. The information substantiates the construct validity of the measures. The clinical and research utility of the measures are discussed.
Measuring next of kin's experience of participation in the care of older people in nursing homes
Westergren, Albert, Behm, Lina, Lindhardt, Tove, Persson, Magnus, Ahlström, Gerd
(2020)
Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes. OBJECTIVE: We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes. METHODS: A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis. RESULTS: The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (≥ 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances). CONCLUSION: Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention.
Measuring participation of children with disabilities: Issues and challenges.
Coster WJ, Khetani AM.
(2007)
PURPOSE:
The aim of this paper is to examine conceptual issues that challenge development of valid and useful measures of children's participation.
METHOD:
Ambiguities in the current definition of participation in the International Classification of Functioning, Disability and Health (ICF) are examined along with their implications for developing valid measures for children and youth.
RESULTS:
Developers of new measures must address three key issues that will affect the ultimate meaning of participation data obtained from these instruments: uncertain criteria to distinguish activity from participation; lack of consensus on whether measures should address objective or subjective aspects of participation or both; and appropriate choice of respondent when children are the focus. Variations in how the participation construct is operationalized challenge one's ability to develop a coherent body of knowledge about children's participation and the factors that influence it.
CONCLUSION:
Given current variations in how participation is being defined, both developers and users of measures of participation need to be explicit about the definition of participation that a particular measure represents and the inferences that can be drawn from the scores.
Measuring responsive style in parents who use AAC with their children: Development and evaluation of a new instrument.
Broberg, M., Ferm, U., & Thunberg, G.
(2012)
The aim of this study was to develop and evaluate an instrument - the Responsive Augmentative and Alternative Communication Style (RAACS) scale Version 2 - to assess the communicative style of parents as they interact with their children using augmentative and alternative communication (AAC). This scale was used to analyze play interactions between 43 parents and 28 children with different diagnoses (including Down syndrome, autism, cerebral palsy, and intellectual disability), aged between 12 and 60 months. Parent-child interactions were observed both before and after parent participation in ComAlong, a training course on using responsive communication and AAC to support interaction with children. Based on an analysis of the results, Version 3 of the RAACS scale was developed and is recommended for future use. Analyses of Version 3 showed acceptable inter- and intra-coder reliability, and excellent internal consistency.
Measuring risk and protective factors for substance use, delinquency, and other adolescent problem behaviors: The Communities That Care Youth Survey
Arthur MW, Hawkins JD, Pollard JA, Catalano RF, Baglioni AJ, Jr.
(2002)
Risk and protective factors predictive of adolescent problem behaviors such as substance abuse and delinquency are promising targets for preventive intervention. Community planners should assess and target risk and protective factors when designing prevention programs. This study describes the development, reliability, and validity of a self-report survey instrument for adolescents ages 11 to 18 that measures an array of risk and protective factors across multiple ecological domains as well as adolescent problem behaviors. The instrument can be used to assess the epidemiology of risk and protection in youth populations and to prioritize specific risk and protective factors in specific populations as targets for preventive intervention.
Measuring risk and protective factors for substance use, delinquency, and other adolescent problem behaviors: The Communities That Care Youth Survey
Arthur MW, Hawkins JD, Pollard JA, Catalano RF, Baglioni AJ, Jr.
(2002)
Risk and protective factors predictive of adolescent problem behaviors such as substance abuse and delinquency are promising targets for preventive intervention. Community planners should assess and target risk and protective factors when designing prevention programs. This study describes the development, reliability, and validity of a self-report survey instrument for adolescents ages 11 to 18 that measures an array of risk and protective factors across multiple ecological domains as well as adolescent problem behaviors. The instrument can be used to assess the epidemiology of risk and protection in youth populations and to prioritize specific risk and protective factors in specific populations as targets for preventive intervention.
Measuring the experience and perception of suffering
Schulz, R., Monin, J. K., Czaja, S. J., Lingler, J. H., Beach, S. R., Martire, L. M., et al.
(2010)
Med anhörigglasögon på : så gjorde vi i Göteborg
Nilsson, I. B., Hellberg, I., & Martall, C.
(2010)
Med anhörigglasögon på – så gjorde vi i Göteborg sammanfattar utvärderingen av en samverkansmodell för bättre anhörigstöd.
Kunskapsstödet är en kortversion av Med anhörigglasögon på – utvärdering av en samverkansmodell. Samverkansmodellen rör ett lokalt utvecklingsarbete med och för anhöriga kopplad till teknik och hjälpmedel.
Med anhörigglasögon på. Utvärdering av en samverkansmodell
Martini, M.
(2010)
Med fokus på anhöriga
Sprengel, V.
(2009)
Med makt kommer ansvar - Om kommunernas stöd till barn som växer upp i familjer med missbruk
Junis
(2021)
I den här rapporten redovisar Junis vilken stödverksamhet som landets kommuner
erbjuder barn som växer upp med missbruk eller beroende.
Vi ger också exempel på människor, forskning och verksamhet som gör skillnad för de här
barnen.
Med målet i sikte - Målinriktad och systematisk utvärdering av insatser för enskilda personer (MOS)
Socialstyrelsen
(2012)
Bland professionella som är verksamma i hälso- och sjukvård och socialtjänsten finns i dag ett stort intresse för att följa upp och utvärdera den egna praktiken. Man vill veta om insatserna ger det förväntade resultatet, om klientens problem minskar eller om klientens välbefinnande ökar. Men hur går man till väga för att få relevant och tillförlitlig kunskap om klienternas förbättring och insatsens betydelse?
I denna bok presenteras MOS – målinriktad och systematisk utvärdering av insatser för enskilda personer. MOS är ett sätt att följa upp och utvärdera den egna praktiken och ett verktyg som hjälper professionella och klienter att hålla fokus på det förbättringsmål som klienten vill uppnå i varje led av processen. MOS bygger på Single system designs (SSD) en utvärderingsmetod som länge använts i USA, där den utvecklades redan under 1970-talet. I engelskspråkig litteratur används även andra namn, t.ex. Single subject designs [10] eller Single case experimental designs [1]
I Sverige har detta sätt att utvärdera prövats och använts inom bl.a. rehabilitering och habilitering [5]. Inom socialtjänsten har den endast använts i mindre omfattning. På svenska finns endast några kortare beskrivningar [5,6,11]. En handledning som visar hur metoden ska användas saknas. Därför har denna bok skrivits.
Medborgarna och den offentliga välfärdens organisering : utsatta medborgares erfarenheter av välfärdsorganisationers inriktning och praktiska utformning : En empirisk studie och kunskapsgenomgång (Ansvarskommitténs skriftserie, 1653-5502)
Forssell, E., Olsson, L.-E., & Grosse, J.
(2006)
Medborgarna och den offentliga välfärdens organisering : utsatta medborgares erfarenheter av välfärdsorganisationers inriktning och praktiska utformning : En empirisk studie och kunskapsgenomgång. (Ansvarskommitténs skriftserie, juli 2006).
Forssell, E., Olsson, L.-E., & Grosse, J.
(2006)
Medborgarnas insatser och engagemang i civilsamhället – Några grundläggande uppgifter från en ny befolkningsstudie
Olsson, L.-E.
(2005)
Medication compliance in older individuals with depression: gaining the views of family carers
Boyle, E., & Chambers, M.
(2000)
Documented evidence indicates that medication non-compliance for the older person is a common and poorly understood problem. This paper reports on a pilot study, which used a focus group interview to explore carers' attitudes, experiences and perceptions regarding medication compliance for their older depressed relative. It aimed to understand the problems and challenges encountered by carers in respect of their relative being non-compliant, and provide material to develop a comprehensive educational and support package to promote antidepressant compliance. A convenience sample of seven carers participated in the focus group and a qualitative analysis of the interview identified a number of key issues. Carers had little knowledge of depression, they were not well informed regarding antidepressant medication and they took an active role to ensure compliance. The focus group highlighted the need for health care professionals to promote and encourage carers to be part of the older individuals treatment programme and provide concise and unambiguous educational information in relation to antidepressants and the importance of compliance.
Medicinsk omvårdnad vid svåra flerfunktionshinder : handbok
Ölund, Ann-Kristin
(2012)
Att leva med stora funktionsnedsättningar innebär att vara beroende av god medicinsk omvårdnad. Den här handboken ger kunskap om varför funktionshindren uppstår, hur det påverkar kroppen och hur den praktiska omvårdnaden i vardagen kan utföras på bästa sätt
Medicinsk omvårdnad vid svåra flerfunktionshinder. Handbok.
Ölund A-K.
(2012)
Det här är en handbok som beskriver den medicinska omvårdnaden om personer med svåra flerfunktionshinder. Den tar upp symtom på olika problem, vilka behandlingsalternativ som finns och hur den praktiska omvårdnaden går till.
Boken riktar sig till alla som möter personer med flerfunktionshinder - anhöriga, assistenter, vårdpersonal - men också till habiliteringens personal. Den förmedlar fakta och kunskap på ett sätt som både går på djupet och är lättillgängligt.
Boken är tydligt uppdelad på olika kapitel som sömn, smärta och epilepsi, och kan därför även användas som uppslagsbok. Längst bak finns en omfattande lista med referenser och tips på vidare läsning.
Författare är Ann-Kristin Ölund, habiliteringsläkare och barnneruolog. Hon har över 20 års erfarenhet av praktiskt arbete med barn med flerfunktionshinder vid habiliteringarna i Uppsala och i Norrbotten. Boken är skriven med värme och en önskan om att personer med flerfunktionshinder ska kunna utvecklas efter sina unika förutsättningar.
Röster från läsare
"Denna bok fungerar utmärkt som uppslagsbok då den är indelad i tydliga kapitel utifrån möjliga problemområden, t.ex. spasticitet, smärta och epilepsi. Den är skriven på ett enkelt och lättförståeligt sätt med flera förklarande bilder samt tips- och faktarutor. Detta gör att den lämpar sig väl för närstående så väl som vårdpersonal. Ann-Kristin Ölunds mångåriga erfarenhet som läkare med praktiskt arbete med habilitering av personer med flerfunktionshinder gör att bokens innehåll känns kärnfullt och relevant."
Medmänniska och anhörig : En studie av informella hjälpinsatser (Sköndalsinstitutets skriftserie, 17).
Jeppsson-Grassman, E.
(2001)
Medmänniska och anhörig : en studie av informella hjälpinsatser.
Jeppsson-Grassman, E.
(2001)
Medmänniska och anhörig. En studie av informella hjälpinsatser
Jeppsson Grassman, E.
(2002)
Anhöriga och anhörigstöd i Stockholms län. Sammanfattning av ett forskningsprojekt, E. Jeppsson Grassman.
Meeting the needs of parentally bereaved children: a framework for child-centered parenting
Saldinger, A., Porterfield, K., & Cain, A.C.
(2004)
Abstract
This article describes the development and deployment of a framework for measuring parenting capacities in the context of bereavement. Grounded theoretical analysis of interviews with a community sample of 41 bereaved spouses with school-aged children elicited a set of nine bereavement-specific parenting tasks. A corollary coding system (covering all nine parenting tasks) was created to transform interview materials into quantitative data, thus permitting systematic empirical investigation of the parenting capacities of bereaved spouses. Parenting behaviors were coded on a 5-point scale ranging from least child-centered to most child-centered. Sex of surviving parent and circumstances of death proved to be significant mediating variables: mothers were more child-centered than fathers, and parents surviving sudden deaths more child-centered than those surviving anticipated deaths. Lengthy illness was associated with less child-centered parenting. The more child-centered the parenting, the less symptomatic the child as measured by parent report (Child Behavior Checklist) and child self-report (Children's Depression Inventory, Revised Child Manifest Anxiety Scale). Child-centered parenting was associated with more positive and fewer negative perceptions of the surviving parent by the child as measured by the Parent Perception Inventory. Implications of findings are discussed.
Men and older persons also care, but how much? Assessing amounts of caregiving in Spain and Sweden
Sundström Gerdt, Jegermalm Magnus, Abellán Antonio, Ayala Alba
(2018)
Abstract [en]
We estimate how much caregiving men and women respectively do, and how much of the caregiving is done by older (65+) and younger persons, inside their household and for other households, in Spain and in Sweden. To assess this, we use self-reported hours of caregiving from two national surveys about caregiving, performed in 2014 (Spain, N = 2003; Sweden, N = 1193). Spain and Sweden have dissimilar household structures, and different social services for older (65+) persons. Caregivers, on average, provide many more hours of care in Spain than in Sweden. Women provide about 58% of all hours of caregiving, in Spain in all age groups, in Sweden only among younger caregivers. The reason is the dominance of partner caregivers among older Swedes, with older men and women providing equal hours of care. Family caregiving inside the household is more extensive in the more complex Spanish households than in Swedish households. Family care between households prevails in Sweden, where the large majority of older persons live with a partner only, or alone. This is increasingly common in Spain, although it remains at a lower level. We estimate that older persons provide between 22% and 33% of all hours of caregiving in Spain, and between 41% and 49% in Sweden. Patterns of caregiving appear to be determined mainly by demography and household structure.
Men caring for wives or partners with dementia: masculinity, strain and gain
Baker, K. L., Robertson, N., & Connelly, D.
(2010)
Neuropsychological assessment (4th ed.).
Lezak, M. D.
(2004)
Known as "the bible" in its field, this classic text is an essential resource for students learning the field of clinical neuropsychology
This text provides timeless descriptions of all of the major syndromes, and updated information on assessment techniques and treatment
Suitable for use by professionals for clinical care and research, in educational settings for teaching and training, and by neuroscientists in many fields for reference information
Each of the authors has a unique clinical expertise, and all chapters are co-written
The book provides an up-to-date review of the current neuroscience research and clinical neuropsychology practice with many new references.
New to this Edition:
The new edition features structural and functional neuroimages in a color plate section
The new edition inludes newly developed testing batteries for specific issues such as frontal lobe and executive function evaluation
New e-service development in the homecare sector: beyond implementing a radical technology
Essén, A. & Conrick, M.
(2008)
New possibilities for home nursing with information technology
Magnusson, L., & Hanson, E.
(2003)
Newborns with impairment: Discourses of Hospital Staff
Vehkakoski, Tanja
(2007)
The birth of a baby with an impairment goes against dominant cultural ideals about a happy event. Therefore, the interaction between professionals and parents is particularly important, from the hospital maternity ward to the home. In this article, the author examines both the representations of neonatal impairments constructed by professionals and the consequent subject positions for these babies with impairments. The study is based on interview data collected among 19 staff members of one Finnish county hospital. The author analyzed the data by means of qualitative discourse analysis and concludes that it would be important for health care professionals to provide many-sided elements for parents to consider in the construction of the image of their baby other than traditional tragically and negatively biased cultural interpretations.
Next of kin’s conceptions of the quality of care in psychiatric setting: A phenomenographic study
Schröder, Agneta, Wilde-Larsson, Bodil & Ahlström, Gerd
(2007)
The next of kin play a decisive role in the care provided for patients. This and their unique experience of psychiatric care make it important to include them when defining quality of care. The aim of the present study was to describe how next of kin perceive the concept of quality of care in the case of psychiatric care. Twelve next of kin were included in a qualitative interview study and a phenomenographic approach was used for the analysis of the interviews. The next of kin described quality of care mainly from their own perspective but also to a large extent from the patient's perspective as well. Five descriptive categories resulted: dignity, security, participation, recovery, and health-promoting surroundings. Good relations and communication between staff, patients, and next of kin emerged as the central factors regarding the quality of psychiatric care. The next of kin asked for information about psychiatric illnesses and wanted to cooperate in the care. They avoid telling others about their family member's psychiatric illness because of a feeling of shame and guilt. Staff education regarding such feelings and stigmatization could be useful in furthering the understanding of the next of kin's distress and developing interventions to alleviate it. Clinical practice can be improved by guidelines and instruments developed on the basis of this study.
Next-of-kin caregivers in palliative home care - from control to loss of control
Munck B, Fridlund B, Mårtensson J.
(2008)
Next-of-kin's conceptions of medical technology in palliative homecare
Munck B, Sandgren A, Fridlund B, Mårtensson J.
(2012)
Aims and objectives. Describe next-of-kin's conceptions of medical technology in palliative homecare. Background. Next-of-kin to palliative patients are in an exposed position with increasing responsibility. The more involved they are in the care, the greater caregiver burden they describe. Medical technology has become increasingly common in palliative homecare, and previous research suggests that the devices transform the homes to a hospital ward, thus shifting responsibility from the personnel to the next-of-kin. Design. An explorative descriptive design with a phenomenographic approach was chosen to describe qualitatively different conceptions of the phenomenon medical technology. Method. Interviews with 15 next-of-kin to patients in palliative homecare were analysed in a seven-step process where 10 conceptions emerged in five description categories. Results. Medical technology in palliative homecare required next-of-kin's responsibility in monitoring or providing practical help. It also implied uncertainty among the next-of-kin because of worries about its safety or because of an improper handling. The technology trespassed on daily life because it restricted and affected the private sphere. Medical technology enabled comfort as it implied security and was a prerequisite for the patient to be cared for at home. It also required an adjustment to comprehend and manage the medical technology. Conclusions. Medical technology resulted in an increased caregiver burden and uncertainty among the next-of-kin. Although it meant restrictions and affected their social life, they had great confidence in its possibilities. Relevance to clinical practice. It is important to limit the amount of personnel and materials in the home to avoid trespassing on the family's daily life. Medical personnel also have to be sensitive to what next-of-kin have the strength to do and not use them as informal caregivers.
Nondirective counseling. Effects of short training and individual characteristics of clients [Akademisk avhandling].
Rautalinko E.
(2004)
Nondirective counseling is to listen, support, and advise, without directing a client's course of action. It has been influenced by humanistic theories in the tradition of Carl Rogers, but techniques used in nondirective counseling are common in many forms of psychological counseling and treatment today. There are, however, few conclusions as to what the results of training nondirective counseling are. The purpose of the present thesis is to examine effects of nondirective counseling training, and to analyze how such effects are moderated by the characteristics of clients. Three quasi-experimental or experimental studies (Paper IIII) are presented. In Paper I, trained and untrained insurance company employees were compared on their Reflective listening (RL; a subskill of nondirective counseling) skills before and after a training program. Training increased RL, and the skills were transferred to authentic settings. Trained employees were, however, not evaluated differently than untrained. In Paper II, psychology students were compared before and after RL training of three time lengths. All training times increased skills equally, but clients disclosed more information to those with longer training, the students remembered the information better, and external judges perceived the therapeutic relationship as better, especially if the judge was socially competent. In Paper III, two nondirective counseling techniques, RL and open-ended questions, were evaluated by judges who differed in social skills and cognitive ability. RL received positive ratings, whereas open-ended questions did not, and the judges' ratings were moderated by their social skills and cognitive ability. In the Discussion, it is proposed that even short training has effects, that trained skills generalize to authentic contexts, but that the usefulness of the examined subskills of nondirective counseling depends on client characteristics such as social skills and cognitive ability.
Nonpharmacologic Management and Treatment Effect of Support and Counseling on Caregivers of Patients With Alzheimer´s Disease
Mittelman, M. S.
(2000)
Nonverbal narratives: Listening to people with severe intellectual disability
Dennis, R.
(2002)
This article describes an exploratory study that examined the perspectives of practitioners who spend much of their working day listening to and in some ways "interpreting" for people with severe intellectual disabilities. On the basis of focus group interviews with 23 professional disability-sector workers, including speech therapists, psychologists, and human service workers, the article reports on the importance of a practitioner's values and experience in successful interactions with individuals who rely on self-developed nonsymbolic communication repertoires. The article includes a discussion of the likelihood of including individuals with severe intellectual disabilities in narrative research.
Nordisk äldreomsorgsforskning. En kunskapsöversikt. TemaNord 2005:508.
Szebehely, M, (red).
(2005)
Normal disruption": South Asian and African/Caribbean relatives caring for an older family member in the UK
Adamson, J. and J. Donovan
(2005)
Normaliseringsprincipen
Nirje, Bengt
(2003)
ormaliseringsprincipen handlar om funktionshindrades rätt till livsvillkor och vardagsmönster som ligger så nära de normala som möjligt. Sedan principen formulerades av Bengt Nirje i slutet av 1960-talet har den haft ett stort inflytande på handikappolitiken både i Sverige och i andra länder. Nirje har under årens lopp i artiklar på engelska presenterat och utvecklat principen. I denna bok presenteras dessa artiklar i uppdaterat skick för första gången på svenska och samlade i ett verk.
Principen utgår från att alla individers jämlikhet med den därav följande etiken som grund under livets gång. Särskilt nyskapande blev Nirjes betoning av utvecklingsstördas rätt till självbestämmande.
Principen är tvärvetenskaplig och kan därför studeras av högskolestuderande inom pedagogik, psykologi, socialpsykologi, kulturantropologi, sociologi samt omsorgsvetenskap. Den kan även vara av intresse för yrkesverksamma samt föräldrar till funktionshindrade.
Normaliseringsprincipen sätts i ett inledande kapitel in i sitt historiska sammanhang av Mårten Söder, som i ett avslutande kapitel även diskuterar dess betydelse för handikappolitik och handikappforskning.
Normaliseringsprincipen [The principle of normalization]
Nirje B.
(2003)
Normbrytande beteende i barndomen. Vad säger forskningen?
Andershed A-K, Andershed H.
(2005)
Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling.
Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.
Normbrytande beteende I barndomen. Vad säger forskningen?
Andershed A-K & Andershed H.
(2005)
Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling. Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.
Not throwing out the partnership agenda with the personalisation bathwater
Dickinson, H. & Glasby ,J.
(2008)
Not throwing out the partnership agenda with the personalisation bathwater
Dickinson, H. & Glasby ,J.
(2008)
Nu har vi nog hittat den rätta hemtjänsten…”En intervjustudie om äldre som har bytt hemtjänst
Ruottinen, E.
(2010)
Nurses and families. A guide to family assessment and intervention
Wright LM, Leahey M.
(2009)
Nurses' encounters with children as next of kin to parents with a cancer diagnosis on oncology wards
Holmberg, Pär, Nilsson, Johanna, Elmqvist, Carina, Lindqvist, Gunilla
(2019)
It is a challenge for registered nurses (RNs) to meet children and young people who have a parent diagnosed with cancer. These children often suffer from shock, anxiety, outrage, fear and stress. Recent studies indicate that when next of kin have a professional person to talk to, their wellbeing increases. Moreover, when these children are involved in their parent's care they also begin to trust the nurse caring for their parent. However, there is little known of how nurses respond to a child's needs. Thus, aim of this study was to describe RNs' experiences of encounters with children as next of kin to a parent diagnosed with cancer. A qualitative descriptive study based on semi-structured group interviews, with a latent content analysis was carried out. One theme, 'sense of security' including three categories 'balanced meeting', 'de-dramatize healthcare' and 'learn from one another' was identified. Beyond the categories, there are six sub-categories: 'sense of insecurity', 'caring approach', 'providing information', 'participation', 'processing and follow-up' and 'increased knowledge'. The findings of this study highlight the importance of strengthening the RN's ability to create a caring relationship with children as next of kin.
Ny Socialtjänstlag. 1994:139
Socialdepartementet
(1994)
Nya verktyg för föräldrar – förslag till nya former av föräldrastöd. Rapport 2004:46
Bremberg, S. (Ed.).
(2004)
Nya verktyg för föräldrar – förslag till nya former av föräldrastöd. Rapport 2004:46.
Bremberg, S. (Red.).
(2004)
Nya verktyg för föräldrar. Slutrapport från uppdrag om föräldrastöd
Bremberg, Sven (redaktör)
(2004)
Utgångspunkten för denna rapport är ett uppdrag regeringen givit Statens
folkhälsoinstitut till att samla in, analysera och sprida kunskap om hur för-
äldrastöd av olika slag kan utformas för att göra verklig nytta.
Stöd till föräldrar kan både inriktas på föräldrarnas och på barnens
behov. Det som kommer föräldrarna till del gynnar ofta barnen, men detta
är inte givet. Mot denna bakgrund diskuteras i första hand insatser som är
inriktade på att tillgodose barns behov.
Nytt perspektiv på anhörigstöd
Larsson, M & Lundqvist-Brömster M.
(2009)
Nyttan och värdet av bostadsanpassningar ur olika perspektiv.
Arman, Rebecka & Lindahl, Lisbeth
(2005)
När allt förändrades
Clarén, Anna
(2018)
Sammanfattning
De var en lycklig familj med två barn i det vackraste landet Sverige. När det tredje barnet föddes förändrades allt. Det lilla barnet fick sin diagnos och familjen började kämpa med den nya situationen. Långsamt började familjen falla samman. Fotografen Anna Clarén har använt sin kamera som ett verktyg för dokumentation, men också som terapi och tröst. Resultatet är en djupgående och överväldigande berättelse om en familj och om autism som inte lämnar någon oberörd. Boken är en intim och djupt personlig fotografisk dokumentation av en familj i ett skede när livet plötsligt och fullständigt förändras
När andra sover : hur sömnsvårigheter hos barn med funktionshinder påverkar familjens liv
Stenhammar, Ann-Marie m.fl.
(2005)
Riksförbundet för rörelsehindrade barn och ungdomar, RBU, drev projektet "Läggdags" och denna bok är ett resultat av projektet. Den beskriver resultaten av en enkätundersökning som besvarades av femhundra familjer. Många av föräldrarna är konstant trötta, men studien visar att föräldrarna kan få tillbaka sin nattsömn om barnen och de själva får bra stöd. I boken berättar föräldrarna vilket stöd de behöver.
När livet inte längre kan tas för givet
Södereberg, Siv
(2009)
När mamma eller pappa dricker
Arnell, A., & Ekbom
(1996)
När mamma eller pappa dricker. En handbok om att arbeta i grupp med barn till alkoholister.
Arnell, Ami & Ekbom, Inger
(2002)
10 % av alla barn kommer från hem där den ena föräldern missbrukar eller har missbrukat alkohol. Det är 150 000 glömda barn, som först på senare år börjat uppmärksammas. Erfarenheter visar att arbete i grupp ger goda möjligheter att framgångsrikt möta de här barnens behov. Handbok med arbetsblad.
Recognition and justice: outline of a plural theory of justice
Honneth, Axel
(2004)
In this article, Axel Honneth outlines a plural theory of justice. In developing his argument he takes his departure not in the classic elimination of 'inequality', but in the avoidance of 'humiliation' or 'disrespect'. He is convinced that an appropriate point of departure for a recognition-theoretical conception of justice must show that the experience of social injustice is always measured in terms of the withholding of some recognition held to be legitimate. Throughout the article, Honneth makes strong reservations about Nancy Fraser's approach, where 'recognition' and 'redistribution' are separated into two conceptual totalities with the single goal of 'participatory equality'. On the contrary, he suggests having a more elaborate concept of identity formation, so that participating in the public realm means participating without shame, capable of unfurling his or her own personality's potential in an unforced manner and of thus developing a personal identity. From this standpoint Honneth points to three differentiated spheres of recognition that must be obtained if the individual is to obtain a personal identity, namely love, equal treatment in law and social esteem
När mammor dör: Kvinnor om att mista sin mor
Antologi
(2020)
Tillsammans med 30 andra kvinnor, i olika åldrar, har jag skrivit om hur det är att förlora en mamma. En viktig bok som jag är stolt att vara en del av. "När mammor dör växer det sly överallt" skriver Göran Tunström. Men det behöver inte bli ensamt. Det vill vi förmedla. För mig är det även en hyllning till min mamma Kerstin
Recommended communication-based interventions for individuals with severe intellectual disabilities
Ogletree BT, Bruce SM, Finch A, Fahey R, McLean L.
(2011)
Providing effective interventions for individuals with severe intellectual disabilities (ID) continues to challenge educators, speech-language pathologists, and other allied health professionals.This article reviews recommended intervention practices that have emerged over the past 30 years and illustrates their use through an evidenced-based case example. The article concludes with remarks specific to the case and a charge to those involved with communication interventions for this population. © Hammill Institute on Disabilities 2011.
Reconciling partner Care and Paid Work in Finland and Sweden
Leinonen A, Sand A-B.
(2013)
Reconsidering the term 'carer': a critique of the universal adoption of the term 'carer'
Molyneaux V, Butchardf S, Simpson J, Murray C.
(2011)
This critique of the term 'carer' argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is 'carers' and those who are cared for. The paper considers the historical and political development of the term 'carer' before examining research in various 'carer'-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term 'carer' is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term 'carer' as a recognisable and valid description of the relationship between 'carers' and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at 'carers', therefore inadvertently meeting the original aims of the term, that is, to increase support for 'carers'. Adapted from the source document.
Recovery from Disability
Liberman, Robert Paul
(2008)
Närstående till äldre – deras behov och användning av stöd.
Krevers, B., & Öberg, B.
(2007)
Närståendes behov : Omvårdnad som akademiskt ämne III
Östlinder, G.
(2004)
Närståendes behov av stöd
Kjellman, U
(2007)
Reducing conduct problems among children of battered woman
Jouriles, E. N., McDonald, R., Spiller, L., Norwood, W. D., Swank, P. R., Stephens, N., . . . Buzy, W. D.
(2001)
This study was an experimental evaluation of an intervention designed to reduce conduct problems among children of battered women. Participants were 36 families (mothers and children) in which the mother had sought shelter because of relationship violence and had at least 1 child (4-9 years old) with clinical levels of conduct problems. The intervention consisted of 2 primary components: (a) providing instrumental and emotional support and (b) teaching child management skills to mothers. Families were randomly assigned to either the intervention condition or the existing services comparison condition and were assessed on 5 occasions over 16 months after shelter departure. Compared with families receiving existing services, children in the intervention condition improved at a faster rate, the proportion of children displaying clinical levels of conduct problems was greatly diminished, and mothers displayed greater improvements in child management skills.
Närståendes konsekvenser [Elektronisk resurs] : hur kan de inkluderas i den hälsoekonomiska analysen?
Davidson, T. & Levin, L-Å.
(2008)
Närståendes upplevelse av hur relationen förändras när närstående drabbas av demens. (C-uppsats)
Johansson, A.
(2006)
Närståendes upplevelser av stöd från distriktssköterskor vid palliativ vård i hemmet (D-uppsats)
Överlind, A.
(2005)
Reducing Parental Risk Factors for Children's Substance Misuse: Preliminary Outcomes with Opiate-Addicted Parents.
Catalano RF, Haggerty KP, Gainey RR, Hoppe MJ.
(1997)
Parents in methadone treatment were offered an experimental intervention, Focus on Families, designed to reduce their risk of relapse and their children's risk of substance use. Experimentally assigned volunteers participated in systematic group training in relapse prevention and parenting skills, and received home-based case management services. Immediate posttreatment outcome results reported here include analyses of covariance controlling for baseline measures. Analyses show experimental parents held more family meetings to discuss family fun, displayed stronger refusal/relapse coping skills, demonstrated stronger sense of self-efficacy in role-play situations, and had lower levels of opiate use than control subjects. No significant differences in family bonding, family conflict, or other measures of drug use were found. The utility of intervening with drug-addicted parents in methadone treatment is discussed in light of these findings.
Reflections A Story of Hope, Healing, Facing Fears, and Finding Purpose
Hobbs Brian, Hobbs Fia
(2020)
Gives hope and inspiration to live a full life despite the adversity of cancer Teaches readers how to overcome fears Shows the importance of finding one's passion and purpose Saying goodbye and putting things in order before dying Coming to terms with mortality Finding out what truly matters in life
Reflekterande processer. Samtal och samtal om samtalen
Andersen, Tom
(1994)
"Jag skulle önska att vi helt slutar att tala om terapi och forskning som människoteknik, och hellre talar om det som människokonst, konsten att delta i band med varandra." Så skriver Tom Andersen i avslutningen av det nya kapitel som tillfogats i denna upplaga av Reflekterande processer. Vidare utveckling av den ursprungliga bokens tankar redovisas också, till exempel om uttrycksformer som tar tillvara kroppens perspektiv och erfarenheter från arbetsrelationer i praktik och forskning "där man lagt vikt på att relationerna ska vara till nytta för alla som tar del i dem."
Bokens ursprungliga budskap om reflektion och mångfald av perspektiv i familjeterapeutiskt arbete är fortfarande är lika angelägna, och har visat sin bärkraft och utvecklingsförmåga i långt vidare sammanhang. Eller som författaren uttrycker i förordet till den här upplagan. "Det har på sätt och vis stämt till eftertanke att boken har blivit läst och dess idéer blivit använda i så många sammanhang i så många länder. Särskilt att den har slagit an så starkt i länder som varit under totalitära regimer."
Reflekterande processer ges numera ut av Studentlitteratur AB. Denna andra upplaga innehåller dock inga förändringar av innehållet jämfört med den första upplagan.
Reflekterande processer. Samtal och samtal om samtalen
Andersen, T.
(2007)
Nästan alla dagar grät jag
Kristine Lorentzson
(2018)
Vem blir man, när man får veta att ens barn är nära att dö i en livshotande hjärtsjukdom? Vad kan man ta in och vad flyter förbi? Hur går tankarna för den som tvingas bo länge på ett sjukhus? Vad innebär det att leva och hur nära kan Döden stå utan att ta den man älskar?
"Nästan alla dagar grät jag" är berättelsen om en familj där sonen blir akut inlagd på sjukhus för hjärtsvikt. Dag för dag följer vi familjen på sjukhuset, totalt 313 dagar. Berättelsen bygger på en verklig händelse.
Nöjda och trötta". Personalens upplevelser av hemsjukvård. Äldreuppdraget 99:2.
Socialstyrelsen
(1999)
Registrering og oppfølging av barn som pårørende vedSørlandet sykehus
BarnsBeste
(2013)
Regular article: A comprehensive substance abuse treatment program for women and their children: an initial evaluation
Conners NA, Bradley RH, Whiteside-Mansell L, Crone CC.
(2001)
This article examines a comprehensive, residential substance abuse treatment program for women and their children. A majority of the 72 participants studied were African American single mothers, for whom crack/cocaine was the drug of choice. The women and their children were assessed repeatedly during treatment, and at 3, 6, and 12 months postdischarge. Program impact was estimated by comparing the outcomes of three groups that differed in the amount of treatment they received: early dropouts, late dropouts, and treatment graduates. Program graduates showed more positive outcomes than the nongraduate comparison groups in the areas of drug use and negative consequences of use, employment and self-sufficiency, and family interaction skills. Young children enrolled in treatment with their mothers were assessed using a developmental screening test, and older children with a measure of drug refusal skills. Results from both child measures suggest substantial improvement.
Regular article: Alcoholics Anonymous attendance following 12-step treatment participation as a link between alcohol-dependent fathers' treatment involvement and their children's externalizing problems
Andreas JB, O'Farrell TJ.
(2009)
We investigated longitudinal associations between alcohol-dependent fathers' 12-step treatment involvement and their children's internalizing and externalizing problems (N = 125, M(age) = 9.8 +/- 3.1), testing the hypotheses that fathers' greater treatment involvement would benefit later child behavior and that this effect would be mediated by fathers' posttreatment behaviors. The initial association was established between fathers' treatment involvement and children's externalizing problems only, whereas Structural Equation Modeling (SEM) results supported mediating hypotheses. Fathers' greater treatment involvement predicted children's lower externalizing problems 12 months later, and fathers' posttreatment behaviors mediated this association: Greater treatment involvement predicted greater posttreatment Alcoholics Anonymous attendance, which in turn predicted greater abstinence. Finally, fathers' abstinence was associated with lower externalizing problems in children. Theoretical and practical implications of these findings are discussed.
Regular article: Alcoholics Anonymous attendance following 12-step treatment participation as a link between alcohol-dependent fathers' treatment involvement and their children's externalizing problems.
Andreas JB, O'Farrell TJ.
(2009)
We investigated longitudinal associations between alcoholic fathers' 12-step treatment involvement and their children's internalizing and externalizing problems (N=125, Mage=9.8±3.1), testing the hypotheses that fathers' greater treatment involvement would benefit later child behavior, and that this effect would be mediated by fathers' post-treatment behaviors. The initial association was established between fathers' treatment involvement and children's externalizing problems only, while structural equation (SEM) results supported mediating hypotheses. Fathers' greater treatment involvement predicted children's lower externalizing problems 12 months later, and fathers' post-treatment behaviors mediated this association: greater treatment involvement predicted greater post-treatment Alcoholics Anonymous (AA) attendance, which in turn predicted greater abstinence. Finally, fathers' abstinence was associated with lower externalizing problems in children. Theoretical and practical implications of these findings are discussed.
Keywords: Children of alcoholics (COA), alcoholism treatment, Alcoholics Anonymous (AA), Structural Equation Modeling (SEM)
Official incidents of domestic violence: Types, injury, and associations with nonofficial couple aggression
Capaldi, D. M., Shortt, J. W., Kim, H. K., Wilson, J., Crosby, L., & Tucci, S.
(2009)
Official police reports of intimate partner violence (IPV) were examined in a community sample of young, at-risk couples to determine the degree of mutuality and the relation between IPV arrests and aggression toward a partner (self-reported, partner reported, and observed). Arrests were predominantly of the men. Men were more likely to initiate physical contact, use physical force, and inflict injuries than women, although few injuries required medical attention. In the context of nonofficial aggression toward a partner, overall, women had higher levels of physical and psychological aggression compared to men, and levels of severe physical aggression did not differ by gender. Couples with an IPV arrest were more aggressive toward each other than couples with no IPV arrests; however, nonofficial levels of aggression were not higher for men than for women among couples experiencing an IPV incident.
Offspring Caring for Their Elderly Parents: The Effect of Social Support and Gender-Role Orientation on These Caregivers' Well-Being
Ron, P.
(2008)
Offspring Caring for Their Elderly Parents: The Effect of Social Support and Gender-Role Orientation on These Caregivers' Well-Being
Ron, P.
(2008)
Offspring psychological and biological correlates of parental posttraumatic stress: review of the literature and research agenda
Leen-Feldner, E. W., Feldner, M. T., Knapp, A., Bunaciu, L., Blumenthal, H., & Amstadter, A. B.
(2013)
Millions of individuals with posttraumatic stress disorder (PTSD) are parents. A burgeoning literature suggests that offspring of parents with this condition may be at increased risk for psychological problems. The current paper provides an integrative and comprehensive review of the diverse research literature examining the sequelae of parental posttraumatic stress among offspring. Over 100 studies that evaluated psychological and/or biological variables among children of parents with PTSD are reviewed. Findings suggest parental symptoms of posttraumatic stress are uniquely related to an array of offspring outcomes, including internalizing-type problems, general behavioral problems, and altered hypothalamic-pituitary-adrenal axis functioning. Although very little work has directly evaluated mechanisms of transmission, there is increasing support for genetic and epigenetic effects as well as parenting behaviors. These and other mechanisms are discussed; drawing upon findings from other literatures to consider how parental PTSD may impart psychobiological vulnerability upon offspring. We conclude with a detailed discussion of the methodological strengths and challenges of the extant research, along with a recommended agenda for future research in this important area of study.
Ǿkt individualisering og omsorgsrelasjoner i familien. omosrgsmǿnstre mellom middeladrene kvinner og men nog deres gamle foreldre. Fafo-rapport 420
Gautun, H
(2003)
Older caregivers' coping strategies and sense of coherence in relation to quality of life
Ekwall, A. K., Sivberg, B., & Hallberg, I. R.
(2007)
Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).
Blusi M, Asplund K, Jong M.
(2013)
The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.
Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).
Blusi M, Asplund K, Jong M.
(2013)
The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.
Older immigrants' use of public home care and residential care
Boll Hansen, E.
(2014)
The purpose of this paper is to analyse the extent to which length of residence in the country and country of origin are of importance to older immigrants' use of long-term care services compared to native older people. The analyses were conducted on a population of over 65s living in the Municipality of Copenhagen on 1st Jan 2007. Information was drawn from the administrative registers of the Municipality of Copenhagen on the population's use in 2007 of home care and of residential care in a nursing home. These data were combined by Statistics Denmark with demographic data, socio-economic data and data on the use of health services. It was found that older immigrants are less likely than ethnic Danes to use municipal long-term care services when other predisposing, enabling and need factors are controlled for. The difference is greatest between ethnic Danes and immigrants from non-western countries who have only lived in Denmark for a few years. The difference decreases the longer the immigrant has lived in the country. The findings may be explained, at least in part, by poorer language skills and poorer knowledge of the Danish welfare system among older immigrants and the fact that they are more likely to be cared for by relatives than ethnic Danes are. However, in the course of time language skills improve and knowledge of the system increases and life style with respect to care may approach that of older Danes
Older male carers and the positive aspects of care
Ribeiro, O. & Paul, C.
(2008)
Relations between Parent Psychopathology, Family Functioning, and Adolescent Problems in Substance-Abusing Families: Disaggregating the Effects of Parent Gender
Burstein M, Stanger C, Dumenci L.
(2012)
The present study: (1) examined relations between parent psychopathology and adolescent internalizing problems, externalizing problems, and substance use in substance-abusing families; and (2) tested family functioning problems as mediators of these relations. Structural equation modeling was used to estimate the independent effects of parent psychopathology and family functioning problems by parent gender. Participants included 242 parents in treatment for substance abuse and/or dependence and 59 of their coparents (16.9% in treatment for substance-abuse/dependence) from middle income households (SES: M = 4.7; SD = 2.1). Ratings were obtained for 325 adolescents (48% female; 27.8% non-Caucasian) between the ages of 10 and 18 years (M = 13.5 years; SD = 2.5 years). Parent psychopathology, family functioning problems, and adolescent problems were assessed with parent and coparent ratings on the Symptom Checklist (SCL-90)/Brief Symptom Inventory (BSI), the Family Relationship Measure, and the Child Behavior Checklist, respectively. Results indicated that maternal psychopathology was directly related to adolescent internalizing problems and substance use, but maternal perceptions of family functioning problems failed to mediate relations between maternal psychopathology and adolescent problems. By contrast, paternal perceptions of family functioning problems uniquely mediated relations between paternal psychopathology and adolescent externalizing problems. Findings underscore the importance of examining how mothers and fathers may differentially impact adolescent problems in substance-abusing families.
Older people's "voices"-on paper: obstacles to influence in welfare states-a case study of sweden.
Persson, T. & Berg, S.
(2009)
Older people's experience of proactive welfare rights advice: qualitative study of a South Asian community
Moffatt, S. and J. Mackintosh
(2009)
Older People's Family Contacts and Long-term Care Expenditure in OECD Countries: A Comparative Approach Using Qualitative Comparative Analysis
Haynes, P., Hill, M., & Banks, L.
(2010)
Relationship Between Methods of Coping, Social Support and Receipt of Preventive Care Procedures by Primary Grandmother Caregivers
Muliira, J. K., & Musil, C. M.
(2010)
Om barns rätt och barns bästa
Andersson, G. & Hollander, A.
(1996)
Om barns rätt och barns bästa
Andersson, G. & Hollander, A.
(1996)
Om brukardelaktighet i välfärdssystemen : en kunskapsöversikt
Hultqvist, S.
(2008)
Om konsten att samtala
Enquist, A.
(2009)
Om konsten att överbrygga gränser : en fallstudie om kommunal äldreomsorg och samspelet med andra organisationer
Österström, S.
(2007)
Om någon du känner har en depression. En bok för anhöriga, vänner och drabbade
Gustavson, Christina
(2019)
Depression är en av våra stora folksjukdomar. Man räknar med att omkring en tredjedel av alla har en depression någon gång under sitt liv. Vem som helst kan drabbas, ung, gammal, frisk eller sjuk. Den som är utvilad efter semestern eller den som är trött och sliten av ett påfrestande arbete. Ofta finner man ingen förklarande orsak, utan depressionen bara kom. Bara en tredjedel av de som drabbas söker hjälp. Symptomen kan vara svåra att känna igen. Här i boken ges en bild av hur en depression kan se ut för andra i den deprimerades omgivning. Om det går att upptäcka symptomen lite fortare, så kan fler söka läkare för diagnos och hjälp. Boken visar också hur man som medmänniska hjälper den som drabbats, hur man kan förebygga depressioner och återfall i nya depressioner, samt hur man kan mildra förloppet. Boken vänder sig både till den som är eller har varit deprimerad och till alla vars anhörig, vän eller arbetskamrat drabbats av en depression.
Om omsorg och omsorgsforskningen
Szebehely, M.
(1996)
Omsorgens skiftningar. Begreppet, vardagen, politiken, forskningen. R. Eliasson
Om sociala barnavård
Lundström, Tommy
(2000)
Om sorg vid döende och dödsfall
Grimby A, Johansson ÅK.
(2012)
Om stöd och service till vissa funktionshindrade
Proposition
(1992)
Om yngre barn i socialt arbete
Andersson, G.
(2012)
Omhändertagande med barnets perspektiv
Cederborg, Ann-Christin & Karlsson, Yvonne
(2001)
Omsorg – till glede eller bekymring. Rapport fra en studie om innvandrerkvinners omsorgsansvar for eldre slektinger
Kannick, L.
(1997)
Omsorg människor emellan. En översikt av omsorgsgivande i den svenska befolkningen. (förf. Malmberg B. & Sundström G.).
Socialstyrelsen
(2006)
Omsorg som ges av anhöriga och närstående är omfattande i alla åldrar och regioner i Sverige, men allra mest bland personer i gruppen 45-64 år, då denna omfattar tre av tio personer. Det finns tecken på att omsorg ökar generellt, men omfattningen beror delvis på hur frågorna ställs: från cirka 10 till väl över 20 procent av befolkningen ger omsorg, beroende på hur man definierar vård och omsorg. Omkring 7 procent ger mer omfattande och in¬tensiv omsorg, med dagliga insatser och med inslag av personlig omvårdnad.
Den exakta nivån för omsorgen är svår att fastställa, men den är i varje fall hög och väl i nivå med den informella omsorgen i andra länder. Intensiteten - tidsinsatsen - är dock möjligen mindre än i t.ex. Spanien. En viktig skillnad är också att nordisk omsorg mest sker mellan hushåll, den kontinentalsydeuropeiska mer inom hushållen.
En stor men ingalunda total del av omsorgen riktar sig till äldre personer. Intressant är att även äldre ofta är omsorgsgivare, för partner och andra. Omsorgsgivandet förefaller vara något mer jämställt i Sverige än på kontinenten, dvs. svenska män är omsorgsgivare nästan lika ofta som kvinnor, om än inte lika intensivt, och partneromsorg är ganska jämställd i Sverige. Anhörigomsorg tycks i Sverige vara klasslös, dvs. ungefär lika vanlig i alla samhällsskikt.
Arbete och omsorg låter sig ofta förenas, både för män och för kvinnor. Orsaken är troligen att omsorgsgivande är vanligast i åldrar då många av andra skäl "trappat ned" förvärvsarbetet och att omsorgen mer sällan är omfattande, daglig och "tung" - för de flesta.
Konsekvenser för arbetslivet får omsorgen ibland, men i stort sett endast när det handlar om omsorg för partner, föräldrar eller vuxna barn. Totalt är cirka var femte yrkesverksam också omsorgsgivare. Dessa tycks inte generellt ha sämre hälsa än de som inte har ett sådant åtagande. Om något gäller det motsatta, dvs. att omsorgsgivare har bättre hälsa än de som inte är omsorgsgivare. I en mindre grupp som vårdar partner eller annan nära anhörig kan dock hälsoproblem förekomma.
Anhörigomsorg i Sverige och offentlig omsorg, främst hemtjänst, överlappar ofta varandra. Detta gäller särskilt hjälp till ensamboende äldre, en stor mottagargrupp. Många anhöriga klarar på egen hand sitt åtagande, men åtskilliga uttrycker också behov av offentligt stöd. Sådant stöd måste troligen ta sig olika former å ena sidan för dem som hjälper någon de bor tillsammans med och å andra sidan för dem - majoriteten - som hjälper någon i ett annat hushåll. Där är sannolikt en utbyggd och välfungerande hemtjänst och annan öppen omsorg ofta en lämplig stödform.
Mer än en miljon svenskar är i dag omsorgsgivare för närstående. En del av den ökning man iakttagit beror troligen på ökande behov, men avspeglar nog också allmänt växande sociala nätverk: fler anhöriga betyder mer omsorgsgivande. Till en del kan ökande anhörigomsorg nog också härledas till att den offentliga omsorgen krympt i relation till hjälpbehoven i befolkningen.
Omsorg som arbete : om utbildning, arbetsmiljö och relationer i äldre- och handikappomsorgen
Ahnlund, P
(2008)
Background: At the central administrative level in Sweden, care work is presented as a complex task for which personnel require special qualifications. In elderly care, questions of training and qualifications form the highly topical theme noticed by central actors. According to The National Board of Health and Welfare, the supply of manpower and the educational levels of the workers are the most important factors in ensuring high quality care for the elderly. The question of educational levels is, however, with the exception of personal assistants, not given as much attention in care for people with disabilities.Aim: The aim of this dissertation is firstly to compare elderly care and care for persons with disabilities with the focus to describe and analyse education and work environment in these sectors. Secondly, the aim is to analyse if, and if so how, questions of education interacts with personnel's view of the social work environment.Methods: The thesis is comprised of four studies and paper 1, 2 and 3 are based on the results of a qualitative interview study, which was comprised of 48 persons who worked in elderly care and the care for persons with disabilities. Of the 48 persons who took part in the study, 11 of them worked as middle managers and 37 worked as care workers in the every day care. Paper 4 consists of a research summary on how education for care workers is being studied in a Swedish and an international context.The personnel who participated in the interview study work in different care settings; in elderly care the personnel work in both sheltered housing and public home care services. In the care for disabled persons, the personnel work in residential housing with special services, in public daily activities for people with intellectual disabilities and as personal assistants.Result: Both managers and personnel find it important for care workers to have a degree of educational background as a basis for the learning process at the work place. The results also show that educational levels and the work environment are themes that are discussed differently by different actors. In previous research on education for care workers in both elderly care and the care for People with disabilities, academic education or education at a ground level has been seen as problematic due to the distance it is said to create between the worker and the care recipient. My results show that the discussion about education for care workers has become rather biased, and that highly educated personnel tend to be more aware of the power they possesses and that the relation to the care receiver is important. In elderly care the issue of education seems to be more a question of a general educational level. In the care for people with disabilities, the question of education for personnel is on a more individual basis, where the care workers learn together with the care recipient. Educational levels, the work environment and relations with colleagues and care recipients are connected and support from the managers is important for understanding the work and the relational perspective.
Omsorg som välfärdspolitisk ambition
Evertsson, Lars & Sauer, Lennart
(2007)
Omsorg, en del av livet (förf. Malmberg B. & Sundström G.)
Socialstyrelsen
(2009)
from www.socialstyrelsen.se.
Omsorgens pris i åtstramningstid A nhörigomsorg för äldre ur ett könsperspektiv
Petra Ulmanen
(2015)
Avhandling
För många är det en självklarhet att ge anhörigomsorg, det vill säga hjälpa en anhörig som har en funktionsnedsättning eller långvarig sjukdom och inte kan klara sig på egen hand. Det kan upplevas som meningsfullt, utvecklande och tillfredsställande, samtidigt som det innebär extraarbete och oro för den som behöver omsorgen. Denna avhandling handlar om anhörigomsorg för äldre personer i Sverige, främst de medelålders döttrarnas och sönernas hjälp till sina gamla föräldrar. Vad betyder det för äldres anhöriga att äldreomsorgen har minskat ända sedan 1980 och att var fjärde plats i äldreboende har försvunnit under 2000-talets första decennium? Har anhörigomsorgen ökat och hur påverkas omsorgsgivarnas liv, framförallt deras arbetsliv?
Omsorgens pris i åtstramningstid. Anhörigomsorg för äldre ur ett könsperspektiv. Rapport i socialt arbete nr. 150
Ulmanen, P.
(2015)
För många är det en självklarhet att ge anhörigomsorg, det vill säga hjälpa en anhörig som har en funktionsnedsättning eller långvarig sjukdom och inte kan klara sig på egen hand. Det kan upplevas som meningsfullt, utvecklande och tillfredsställande, samtidigt som det innebär extraarbete och oro för den som behöver omsorgen. Denna avhandling handlar om anhörigomsorg för äldre personer i Sverige, främst de medelålders döttrarnas och sönernas hjälp till sina gamla föräldrar. Vad betyder det för äldres anhöriga att äldreomsorgen har minskat ända sedan 1980 och att var fjärde plats i äldreboende har försvunnit under 2000-talets första decennium? Har anhörigomsorgen ökat och hur påverkas omsorgsgivarnas liv, framförallt deras arbetsliv? Hur vanligt är det med psykiska påfrestningar, svårigheter att fokusera på arbetet eller att gå ner i arbetstid till följd av omsorgsgivandet? Hur har äldreomsorgspolitiken sett på anhöriga till äldre personer och deras roll i omsorgen om äldre från 1950-talet fram till idag? Har äldreomsorg setts som ett sätt att tillgodose inte enbart äldres omsorgsbehov, utan även anhörigas behov av att förvärvsarbeta?
Petra Ulmanen söker svar på dessa frågor genom analyser av såväl surveyundersökningar som regeringens propositioner om äldreomsorg.
Ulmanen, P. (2015). Omsorgens pris i åstramningstid. Anhörigomsorg för äldre ur ett könsperspektiv. Diss. Stockholm: Stockhoms universitet, institutionen för socialt arbete. (Rapport i socialt arbete nr. 150)
Omsorgens pris. Kjønn, makt og marked i velferdsstaten
Widding Isaksen, I. (red).
(2003)
Omsorgsmönster bland kvinnor och män - inte bara en fråga om kön
Szebehely, M.
(2009)
Omsorgsrationalitet. Reflexioner över ett begrepps karriär
Waerness, K.
(1996)
Omsorgens skiftningar: Begreppet, vardagen, politiken, forskningen. R. Eliasson
Omsorgstjänster för äldre och funktionshindrade: skilda villkor, skilda trender?
Szebehely, M, Trydegård, G-B.
(2007)
Omsorgstjänster för äldre och funktionshindrade: skilda villkor, skilda trender?
Szebehely M, Trydegård GB.
(2007)
Välfärdsstatens insatser för personer med funktionshinder och för äldre människor särskiljs sällan i statistik och forskning. När, som i denna artikel, verksamheterna separeras, blir det tydligt att de båda välfärdstjänsterna under senare år har utvecklats åt skilda håll. Ekonomiska resurser, tjänsternas omfattning och personalens arbetsvillkor skiljer sig påtagligt mellan äldre- och handikappomsorgen, och gränsen mellan statens, familjens och marknadens roller har förskjutits på olika sätt.
Omsorgstjänster för äldre och funktionshindrade: skilda villkor, skilda trender?
Szebehely, Marta & Trydegård, Gun-Britt
(2007)
Omvårdnad i barnsjukvården
Tveiten, S.
(2000)
Vilka specifika faktorer har betydelse i omvårdnad av barn? Vilka utvecklingspsykologiska faktorer behöver sjuksköterskan ha kunskap om? Hur reagerar barn vid inläggning på sjukhus? Hur ska sjuksköterskan samarbeta med det sjuka barnets föräldrar och syskon? God omvårdnad av barn kräver speciell kompetens.
On Chronic Illness and Quality of Life: A Conceptual Framework
Nordenfelt, Lennart
(1995)
In this paper I focus on the topic of chronic illness in the context of quality of life. I offer a conceptual explanation of these notions and then try to systematise the various species of suffering connected with chronic illness. Suffering in illness rarely attracts systematic analysis. Part of the reason for this is that the topic is in a way an aspect of common sense. It has an air of self-evidence and seems not to require analysis. However, it is my contention that the nature of human suffering is not at all self-evident. In many ways we know very little about the content and extent of suffering. And, although it may not be sensible to borrow traditional scientific techniques for the study of suffering, we need as much intellectual penetration and rigorous analysis in order to clarify the nature of suffering as for any other scientific investigation. Moreover, there are good reasons for saying that we ought to direct much more of our attention to this humanistic aspect of medicine. We ought to remember that the existence of suffering is one of the main motives, if indeed not the most important motive, for undertaking the medical enterprise.
On health, ability and activity: Comments on some basic notions in the ICF
Nordenfelt L.
(2006)
Purpose. The purpose of this article is to highlight and at the same time criticize the holistic view of health expressed in the "International Classification of Functioning, Disability and Health (ICF)". Particular attention will be paid to the idea suggested in the ICF that not only the ability to perform a specified action but also its actual performance is included in the person's health. My argument intends to show that this is an untenable position.
Method. The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinctions between ability, opportunity, activity and will. My analysis also uses some insights from the contemporary philosophical discussion of health concepts.
Conclusions. Ability (or capacity) and its opposite disability (or incapacity) are essential ingredients in the implicit philosophy of health of the ICF. However, the ICF also puts an emphasis on the actual performance of actions. This is entailed by the performance qualifier that is included in the ICF. I give some arguments for questioning the relevance of this qualifier if it is intended to have a place in the concept of health or have a general function for decisions in health care or rehabilitation. Instead I suggest the introduction of an opportunity qualifier, which could fulfill some of the purposes intended for the performance qualifier.
On health-enabling and ambient-assistive technologies. What has been achieved and where do we have to go?
Koch, S., Marschollek, M., Wolf, K. H, Plischke, M. & Haux, R.
(2009)
On loving and hating my mentally retarded mother
Ronai, Carol Rambo
(1997)
This article explores why I love and hate my mother. It is a
retrospective and ongoing participant observation of the phenomenon
of being the daughter of a mother with mental retardation. In it,
I make use of a layered account, an experimental, postmodern,
ethnographic reporting format which enables the researcher to use
as many resources as possible including social theory, lived
experience, and emotions. By using my own experience, I explore,
through first person narrative, the complex issues and emotions
involved. My conclusion is that the situation is fraught with
ambivalence because my present interactions with my mother are cast
in the light of a past where my mother simultaneously neglected and
protected me.
One year follow-up of significant others of patients who have attempted suicide
Magne-Ingvar, Ulla Öjehagen, Agneta
(1999)
Online counselling: The motives and experiences of young people who choose the Internet instead of face to face or telephone counselling
King, R., Bambling, M., Lloyd, C., Gomurra, R., Smith, S., Reid, W., & Wegner, K.
(2006)
This study used a Consensual Qualitative Research methodology to explore the motivations and experiences of young people who utilize the Internet for counselling over other counselling media. Semi-structured online group interviews (focus groups) were conducted with 39 participants from the Kids Help Line, a 24-hour national telephone and counselling service located in Australia. Analysis revealed five domains relevant to the adolescents' motives and experiences and the frequency of categories within and across cases were analyzed to generate and understand themes and patterns. Specific motivators and barriers are identified and discussed, as are implications for practice and continued research.
Online self-help tools for the relatives of persons with depression - a feasibility study
Stjernswärd S, Östman M, Löwgren J.
(2012)
Background: The Internet's potential as health care tool should be explored. Aim: One objective was to determine the feasibility of constructing a digitally based tool through an iterative design process in cooperation with potential users. The tool's purpose is to alleviate hardships in daily life of relatives of persons with depression. An additional aim was to explore motivation and hindrances to using the tool as a basis for design decisions. Method: An iterative design approach, including data collection through focus groups and with paper and web-based prototypes, was used. Results: Cooperation with potential users, using an iterative design process, was valuable in developing the digitally based tool. Motivations (i.e. to create understanding and rehabilitate oneself) and hindrances (i.e. lack of time or energy) to using the tool were illuminated. Design decisions were based on consideration towards participants' privacy concerns, needs of support and the depression's influence on the relatives' daily life. Conclusion: Prototypes and cooperation with potential users were essential and valuable for the iterative development of the website.
Remaining connected despite separation - former family caregivers' experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home
Johansson A, Ruzin HO, Graneheim UH, Lindgren BM.
(2014)
OBJECTIVES: This qualitative study aimed to illuminate former family caregivers'
experiences of aspects that facilitate and hinder the process of relinquishing
the care of a person with dementia to a nursing home.
METHOD: Ten narrative interviews with former family caregivers were performed and
subjected to qualitative content analysis.
RESULTS: An overall theme showed that family caregivers were remaining connected
to the person with dementia despite separation. They experienced being 'caught by
surprise' when the placement occurred. Negative expectations of dementia care
made the separation more difficult. Lacking adequate information increased
feelings of insecurity. Despite these hurdles, family caregivers found meaning in
the new situation as they felt that they could remain connected to their loved
one. Being recognized as partners in care of the person with dementia after
placement was a facilitating aspect. Family caregivers regarded a
well-functioning interaction with staff and a supportive social network as
reassuring since they facilitated staying in touch.
CONCLUSION: Knowledge of the relinquishing process and adequate information about
dementia and its progression may help family caregivers better prepare for and
adapt to the situation. Family caregivers need to be recognized as partners in
care and a welcoming nursing home environment is of utmost importance.
Renewing everyday hope: the hope experience of family caregivers of persons with dementia
Duggleby, W., Williams, A., Wright, K., & Bollinger, S.
(2009)
Optimism, pessimism, mutuality, and gender: Predicting 10-year role strain in Parkinson's disease spouses.
Lyons, K. S., Stewart, B. J., Archbold, P. G., & Carter, J. H.
(2009)
Optimism, social support, and well-being in mothers of children with autism spectrum disorder
Ekas, N. V., D. M. Lickenbrock, et al.
(2010)
This study used structural equation modeling to examine the relationship between multiple sources of social support (e.g., partner, family, and friends), optimism, and well-being among mothers of children with ASD. Social support was examined as a mediator and moderator of the optimism-maternal well-being relationship. Moreover, the role of optimism as a mediator of the social support-maternal well-being relationship was also evaluated. Results revealed that family support was associated with increased optimism that, in turn, predicted higher levels of positive maternal outcomes and lower levels of negative maternal outcomes. In addition, partner and friend support were directly associated with maternal outcomes. Implications for the development of interventions directed at increasing the quality of social support networks are discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Optimizing patient and family involvement in geriatric home care.
Wolff, J. L., Roter, D. L., Given, B., & Gitlin, L. N.
(2009)
Ordinary families, special children
Seligman, Milton & Darling, Rosalyn Benjamin
(2007)
This popular clinical reference and text provides a multisystems perspective on childhood disability and its effects on family life. The volume examines how child, family, ecological, and sociocultural variables intertwine to shape the ways families respond to disability, and how professionals can promote coping, adaptation, and empowerment. Accessible and engaging, the book integrates theory and research with vignettes and firsthand reflections from family members.
Organisation av stöd och service till barn med funktionshinder
Larsson, Magnus
(2001)
Om projektnät, språkliga förpackningar och institutionella paradoxer. Avhandling vid institutionen för psykologi.
Organiserande av stöd och service till barn med funktionshinder. Om projektnät, språkliga förpackningar och institutionella paradoxer
Larsson, M.
(2001)
Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.
Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.
Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.
Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.
Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.
Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".
De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.
I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".
I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.
För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman. (Less)
Organiserande av stöd och service till barn med funktionshinder. Om projektnät, språkliga förpackningar och institutionella paradoxer.
Larsson, M.
(2001)
Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.
Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.
Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.
Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.
Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.
Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".
De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.
I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".
I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.
För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman.
Organizational effects of information and communication technology (ICT) in elderly homecare: a case study
Vimarlund, V., Olve, N. G., Scandurra, I. & Koch, S.
(2008)
Origin differences in self-reported health among older migrants living in France
Vaillant, N. and F. Wolff
(2010)
Oskars pappa har en CP-skada
Eva-Lena Söderlund
(2016)
illustrationer: Eva Akne
Barn/ungdom
Här får vi en beskrivning av hur det kan vara att ha en förälder med CP-skada.
Resiliency reconsidered: Conceptual consideration, empirical findings and policy implications
Rutter, M.
(2000)
Reviews the literature on the concept of resilience in children. The topic of individual resilience is one of considerable importance with respect to public policies focused on the prevention of either mental disorders or developmental impairment in young people. In planning preventive policies, it is important ot ask whether it is more useful to focus on the risks that render children vulnerable to psychopathology or on the protective factors that provide for resilience in the face of adversity. Topics covered include methodological considerations in the study of resilience, studies directly focusing on resilience, processes associated with resilience, and associated policy implications. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Resiliens: risk och sund utveckling
Borge, H., & Inger. A.
(2011)
Varför utvecklar sig vissa barn på ett tillfredsställande sätt trots en dålig uppväxtmiljö?
Resiliens handlar om barns motståndskraft mot att utveckla psykiska problem. Mötet med risksituationer och svåra livsvillkor behöver inte leda till problemutveckling. I den här boken riktar författaren uppmärksamheten på just de barn som i mötet med risk visar en framgångsrik anpassning - som utvecklar resiliens.
Resiliens har sitt ursprung i samspelet mellan individuella egenskaper och förhållanden i miljön. Genom att komma underfund med orsakerna till resiliens kan vi finna skyddsfaktorer. Därmed skapas nya möjligheter till intervention och förebyggande åtgärder för barn som befinner sig i risksituationer. Introduktionsboken Resiliens ger ett nytt, resursorienterat perspektiv på barn och ungdomars utveckling. Denna reviderade utgåva är uppdaterad med ny forskning och har dessutom utökats med nya kapitel om resiliens i ett livsloppsperspektiv och i ett biologiskt perspektiv.
Boken vänder sig till blivande och yrkesverksamma socionomer, pedagoger, psykologer och andra inom bland annat hälsovård och socialtjänst som arbetar med barn, ungdomar och familjer i risk.
Resources and Strategies: How Parents Cope with the Care of a Disabled Child
Beresford, Bryony A
(1994)
This review has considered the ways parents cope with the chronic strain and daily stressors associated with caring for and bringing up a disabled child. The review has been structured around key concepts from the process model of stress and coping. Coping resources--both personal and socio-ecological--have been described, and the notion of vulnerability when resources are not available has been considered. It is only recently that research has turned to look at the coping strategies parents use. The review drew on research using a variety of methodologies to demonstrate the range of strategies used by parents. The relationship between coping strategies and adjustment was explored, although certain methodological difficulties impede firm conclusions being drawn. Finally, the review examined whether the process model of stress and coping could be usefully operationalised to inform intervention practices with families caring for a disabled child.
Respekt för varandras verksamhet
Antonson, S.
(2004)
Respite for family members
Björge, T.
(2007)
Respite Utilization and Responses to Loss Among Family Caregivers: Relationship Matters
DeCaporale L, Mensie L, Steffen A.
(2013)
Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children. The present study examined the longitudinal relationship between grief reactions in current spousal and adult-children caregivers (N = 72) and in-home respite utilization over 3 months. The Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory Short Form (S. J. Marwit & T. M. Meuser, 2005) was used to assess the grief experiences of participants, and demonstrated good internal reliability among spousal and adult-child caregivers of older adults with a variety of cognitive and physical conditions. Although there was not an association between spouses' grief subscale scores and later respite use, adult children were more likely to use respite after reporting higher levels of grief reactions. This study contributes to our ongoing understanding of differences between spousal and adult-children caregivers of impaired older adults and also lends further support for the reliability and construct validity of the Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory.
Responding to symptoms of Alzheimer's disease: husbands, wives, and the gendered dynamics of recognition and disclosure
Hayes, J., Zimmerman, M. K., & Boylstein, C.
(2010)
Ressiliens
Helmen Borge, A I.
(2011)
Varför utvecklar sig vissa barn på ett tillfredsställande sätt trots en dålig uppväxtmiljö? Resiliens handlar om barns motståndskraft mot att utveckla psykiska problem. Mötet med risksituationer och svåra livsvillkor behöver inte leda till problemutveckling. I den här boken riktar författaren uppmärksamheten på just de barn som i mötet med risk visar en framgångsrik anpassning – som utvecklar resiliens. Resiliens har sitt ursprung i samspelet mellan individuella egenskaper och förhållanden i miljön. Genom att komma underfund med orsakerna till resiliens kan vi finna skyddsfaktorer. Därmed skapas nya möjligheter till intervention och förebyggande åtgärder för barn som befinner sig i risksituationer. Introduktionsboken Resiliens ger ett nytt, resursorienterat perspektiv på barn och ungdomars utveckling. Denna reviderade utgåva är uppdaterad med ny forskning och har dessutom utökats med nya kapitel om resiliens i ett livsloppsperspektiv och i ett biologiskt perspektiv. Boken vänder sig till blivande och yrkesverksamma socionomer, pedagoger, psykologer och andra inom bland annat hälsovård och socialtjänst som arbetar med barn, ungdomar och familjer i risk.
Resultat och erfarenheter från resursenheterna i Teknik och demensprojektet [Elektronisk resurs].
Haraldson, U.
(2008)
Retention of paid related caregivers: who stays and who leaves home care careers?
Benjamin, AE., Matthias, RE., Kietzman, K., Furman, W.
(2008)
Return – utvärdering av en öppenvårdsverksamhet för missbrukare i Sundbyberg
Åström Brewitz, Anne, Bergmark, Åke & Lundström, Tommy
(2007)
Review and selection of online resources for carers of frail adults or older people in five European countries: a mixed-methods study
Papa, R, Efthymious, A, Lamura, G, Piccinini, F, Onorati, G, Papastavrou, E, Tsitsi, T, Casu, G, Boccaletti, L, Manattini, A, Seneca, R, Vaz de Carvalho, C, Durão, R, Barbabella, F, Andréasson, F, Magnusson, L, Hanson, E
(2020)
ABSTRACT
Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.
Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).
Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.
Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.
Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.
Review of the satisfaction with life scale
Pavot, W. and E. Diener
(1993)
The Satisfaction With Life Scale (SWLS) was developed to assess satisfaction with the respondent's life as a whole. The scale does not assess satisfaction with life domains such as health or finances but allows Ss to integrate and weight these domains in whatever way they choose. Normative data are presented for the scale, which shows good convergent validity with other scales and with other types of assessments of subjective well-being. Life satisfaction as assessed by the SWLS shows a degree of temporal stability (e.g., .54 for 4 yrs), yet the SWLS has shown sufficient sensitivity to be potentially valuable to detect change in life satisfaction during the course of clinical intervention. Further, the scale shows discriminant validity from emotional well-being measures. The SWLS is recommended as a complement to scales that focus on psychopathology or emotional well-being because it assesses an individual's conscious evaluative judgment of his or her life by using the person's own criteria.
Reynolds adolescent depression scale
Reynolds WM
(2002)
Riks-Stroke Årsrapport För Helåret 2014
Riks-Stroke
(2015)
Antal registreringar och täckningsgrad
• Under 2014 rapporterades 7 981 vårdtillfällen för TIA, något fler än 2013. Under 2014
registrerades TIA i Riksstroke vid 62 av landets 72 akutsjukhus, tre sjukhus fler än 2013.
• Utifrån antalet registrerade TIA i Riksstroke kan totala antalet TIA i Sverige under 2014
uppskattas till cirka 10 000.
Demografi, riskfaktorer, vårdform och vårdtider
• Något fler män än kvinnor insjuknade i TIA. Medelåldern är 73 år, cirka tre år lägre än för stroke.
• TIA-patienterna var ofta tungt belastade av riskfaktorer och hade relativt hög beräknad risk att
insjukna i stroke (medelvärdet i ABCD2-score var 4,2 på en sjugradig skala). Noterbart är också
att 20 % av patienterna hade förmaksflimmer och att 11 % var rökare.
• Av alla patienter som registrerades utreddes och vårdades 96 % inneliggande.
Medianvårdtiden var tre dagar.
• Av TIA-patienterna kom 48 % till sjukhus inom tre timmar och 57 % kom in med ambulans.
Diagnostik
• Så gott som alla patienter undersöktes med datortomografi, medan 10 % undersöktes med en
magnetresonanstomografi (MR) av hjärnan.
• Kärlundersökning med ultraljud, DT-angiografi eller MR-angiografi genomfördes hos 70 % av
patienterna. Ultraljud var den vanligaste metoden, även om det varierade mellan sjukhusen.
Långtidsregistrering av EKG för att upptäcka hjärtrytmstörningar genomfördes hos 59 % av
patienterna under det akuta vårdtillfället, och för ytterligare 9 % planerades undersökningen
efter vårdtillfället. Variationerna avseende i praxis mellan sjukhusen var stora.
Sekundärprevention
• Av de TIA-patienter som hade förmaksflimmer behandlades 77 % med perorala antikoagulantia,
en påtaglig ökning jämfört med tidigare år. Andelarna som fick sådan behandling varierade
geografiskt. Andelen som behandlades med någon av de nya orala antikoagulantia var 38 %,
en tydlig ökning.
• Blodtryckssänkande läkemedel gavs till 69 % av patienterna och statiner till 74 %, men med
påtagliga variationer i praxis utefter geografi.
• Den absoluta merparten av rökarna (81 %) rapporterades ha fått råd om rökstopp och 79 %
av de med körkort rapporterades ha fått råd om sin bilkörning. Uppgifter om rökstopp eller
bilkörning saknades i vart fjärde till vart femte fall.
• Bland TIA-patienterna var ett återbesök vid en sjukhusmottagning eller i primärvården
planerat för 91 %.
PRELIMINÄR
12
1.2 BAKGRUND
Transitoriska ischemiska attacker (TIA) beror på övergående proppbil
Riktade psykosociala insater till gravida och småbarnsföräldrar med problematiskt bruk av alkohol och narkotika: en litteraturstudie. Barn som anhöriga 2013:5.
Heimdal K, Karlsson P.
(2013)
I rapporten beskrivs resultaten från en litteraturstudie om riktade psykosociala
insatser till gravida och småbarnsföräldrar (med barn upp till 3 år) som har ett
så kallat problematiskt bruk av alkohol och/eller narkotika. Ovanstående grupper
är viktiga att uppmärksamma, dels för den inverkan det problematiska bruket
kan ha på föräldrarana själva, men framförallt på grund av de negativa effekter
detta kan få för föräldra-barnrelationen samt barnets psykiska hälsa och utveckling.
Syftet med litteraturstiden har varit att identifiera, sammanfatta och värdera
den internationella interventionsforskningen på området. Via sökningar i databaser
återfanns 53 relevanta primärstudier. Av dessa undersökte 27 studier interventioner
riktade till gravida, 14 studier fokuserade på insatser till småbarnsföräldrar,
medan 12 studier beskrev effekter av interventioner som påbörjats
under graviditet och avslutats en tid efter barnets födelse.
Sammantaget undersökte dessa studier ett flertal olika typer av interventioner.
Till de interventioner som studerades mest frekvent hörde bland annat hembesök,
behandlingsinsatser samordnade med mödravård samt insatser fokuserade
på föräldraträning/föräldraförmågor.
De aktuella studiernas sammanvägda resultat pekar dock mot att det råder
stor osäkerhet kring de olika insatstypernas effekter. Avsaknaden av enhetligt
vetenskapligt stöd innebär dock inte att stöd saknas helt; snarare drar de olika
studierna skilda slutsatser kring respektive insats. Därtill är många av studierna
alltför metodologiskt svaga för att det ska vara möjligt att uttala sig om effekter,
samt i vilken utsträckning dessa eventuellt kan vara bestående. En slutsats som
kan dras är därmed att det behövs fler experimentella studier med längre uppföljningstider
på området.
Ur ett svenskt perspektiv är det även angeläget med studier genomförda i en
svensk/nordisk kontext, då skillnaderna mellan länderna avseende tillgång till
mödra- och barnhälsovård begränsar möjligheterna att överföra resultat från
exempelvis amerikanska studier till svenska förhållanden.
Ring anhöriga med bildtelefon
Sandqvist, C.
(2010)
Risk and protective factors for teenage mothers and their infants
OSOFSKY, J. D.
(1990)
Risk and resilience. Adaptation in changing times
Schoon, I.
(2006)
What factors enable individuals to overcome adverse childhoods and move on to rewarding lives in adulthood? Drawing on data collected from two of Britain's richest research resources for the study of human development, the 1958 National Child Development Study and the 1970 British Cohort Study, this 2006 book investigates the phenomenon of 'resilience' - the ability to adjust positively to adverse conditions. Comparing the experiences of over 30,000 individuals born twelve years apart, Schoon examines the transition from childhood into adulthood and the assumption of work and family related roles among individuals born in 1958 and 1970 respectively. The study focuses on academic attainment among high and low risk individuals, but also considers behavioural adjustment, health and psychological well-being, as well as the stability of adjustment patterns in times of social change. This is a major work of reference and synthesis, that makes an important contribution to the study of lifelong development.
Risk and resilience: Adults who were the children of problem drinkers
Velleman R, Orford J.
(1999)
This welcome text addresses the important issue of what might become of people who are the children of problem drinkers. The authors have produced a lucid and accessible, though extremely scholarly, overview of available factual information, theoretical issues and practical implications related to this fascinating topic. The core of the book is an original study. This builds upon a wealth of evidence suggesting, though not uniformly, that people who are raised by parents at least one of whom is a 'problem drinker', may subsequently be at high risk for alcohol problems or other life problems. The background to the new research is ably set out. Some individual case histories are described at length. Moreover, a comprehensive and critical review of past research is provided. This encompasses epidemiology and a number of theories concerning mechanisms of transmission (e.g. genetic, environmental) of drinking and other behaviours by parents to their children.
The new research that is described was conducted in order to investigate what the consequences might be of being raised by a problem drinker/problem drinkers. The investigation involved a comparison of 164 people aged 16–35 years, who were the offspring of such adults, and a comparison group of 80 people, who were not. These people were interviewed twice, the second interview being conducted one year after the first. There was a good mix of open and closed questions, allowing for the collection of a wealth of information. This enabled the complexity of these relationships to emerge. Not surprisingly, the findings of this investigation were both numerous and quite complex. The offspring of problem drinkers reported more discord and negative experiences, together with less happy and cohesive family lives than the comparison group. Even so, in relation to adult demoralization, disharmony within the family appeared to be a more important variable than parental drinking per se.
More generally, the authors noted that having a parent who drinks in a damaging way may clearly be a predictor of a wide range of personal problems, including heavy/problem drinking or other drug use among their children. However, this is not an inevitable outcome. As noted by the authors '... overall, and with certain exceptions, the children of problem drinking parents studied here, as young adults were as well adjusted as their peers'. This finding is important and, to some readers, will be unexpected. The authors emphasize the wide variations in how young people adjust and react to having a parent who drinks in a harmful way. They also concluded that: 'Positive mental health as a young adult is best predicted by contemporaneously measured variables.'
The practical implications of this study and of other related evidence are considered. It is suggested that the children of problem drinking parents could be advised that they are 'at risk' in certain respects. They acknowledge that this recommendation is debatable from an ethical point of view. They conclude with a plea to break down reluctance to consider the links between the family and alcohol problems and vice versa. Richard Velleman and Jim Orford are to be congratulated for producing a major work. This is likely to remain the key book on this subject for the foreseeable future.
Risk and resilience: Adults who were the children of problem drinkers
Velleman R, Orford J.
(1999)
This welcome text addresses the important issue of what might become of people who are the children of problem drinkers. The authors have produced a lucid and accessible, though extremely scholarly, overview of available factual information, theoretical issues and practical implications related to this fascinating topic. The core of the book is an original study. This builds upon a wealth of evidence suggesting, though not uniformly, that people who are raised by parents at least one of whom is a 'problem drinker', may subsequently be at high risk for alcohol problems or other life problems. The background to the new research is ably set out. Some individual case histories are described at length. Moreover, a comprehensive and critical review of past research is provided. This encompasses epidemiology and a number of theories concerning mechanisms of transmission (e.g. genetic, environmental) of drinking and other behaviours by parents to their children.
The new research that is described was conducted in order to investigate what the consequences might be of being raised by a problem drinker/problem drinkers. The investigation involved a comparison of 164 people aged 16–35 years, who were the offspring of such adults, and a comparison group of 80 people, who were not. These people were interviewed twice, the second interview being conducted one year after the first. There was a good mix of open and closed questions, allowing for the collection of a wealth of information. This enabled the complexity of these relationships to emerge. Not surprisingly, the findings of this investigation were both numerous and quite complex. The offspring of problem drinkers reported more discord and negative experiences, together with less happy and cohesive family lives than the comparison group. Even so, in relation to adult demoralization, disharmony within the family appeared to be a more important variable than parental drinking per se.
More generally, the authors noted that having a parent who drinks in a damaging way may clearly be a predictor of a wide range of personal problems, including heavy/problem drinking or other drug use among their children. However, this is not an inevitable outcome. As noted by the authors '... overall, and with certain exceptions, the children of problem drinking parents studied here, as young adults were as well adjusted as their peers'. This finding is important and, to some readers, will be unexpected. The authors emphasize the wide variations in how young people adjust and react to having a parent who drinks in a harmful way. They also concluded that: 'Positive mental health as a young adult is best predicted by contemporaneously measured variables.'
The practical implications of this study and of other related evidence are considered. It is suggested that the children of problem drinking parents could be advised that they are 'at risk' in certain respects. They acknowledge that this recommendation is debatable from an ethical point of view. They conclude with a plea to break down reluctance to consider the links between the family and alcohol problems and vice versa. Richard Velleman and Jim Orford are to be congratulated for producing a major work. This is likely to remain the key book on this subject for the foreseeable future.
Risk factors for preschool depression: the mediating role of early stressful life events.
Luby J, Belden A, Spitznagel E.
(2006)
Background: Family history of mood disorders and stressful life events are both established risk factors for childhood depression. However, the role of mediators in risk trajectories, which are potential targets for intervention, remains understudied. To date, there have been no investigations of mediating relationships between risk factors and very early onset depression, a developmental period during which intervention may be more effective. The current study used regression analyses to examine the relationships between family history of mood disorders and stressful life events as risk factors for depression in a preschool sample.
Method: Preschoolers 3.0 to 5.6 years of age participated in a comprehensive mental health assessment. Caregivers were interviewed about their children using a structured diagnostic measure to derive DSM-IV major depressive disorder (MDD) diagnoses and dimensional depression severity scores. Family history of psychiatric disorders and preschoolers' stressful life events was obtained.
Results: Both family history and stressful life events predicted depression severity scores 6 months later. Analyses examining the influence of family history of mood disorders and stressful life events on preschoolers' depression severity demonstrated that stressful life events mediated the relationship between family history and preschoolers' depression.
Conclusions: Findings outline the key role of exposure to early stressful life events as a mediator of familial mood disorder risk in preschool onset depression. This finding in a preschool sample provides support for the hypothesis that psychosocial factors may have increased importance as mediators of risk in younger age groups. Findings suggest that psychosocial factors should be considered key targets for early intervention in depression.
Risk for early death among overloaded family caregivers
Johansson, L.
(2000)
Risk och prognos i socialt arbete med barn - forskningsmetoder och resultat.
Lagerberg D, Sundelin C.
(2000)
IMS har börjat utarbeta studiehandledningar till sina forskningsöversikter.
Det främsta skälet är att underlätta för beslutsfattare och professionella inom
socialtjänsten att tillgodogöra sig innehållet i översikterna, som inte är helt
lättillgängligt. Ett annat skäl är att en studiehandledning kan ge stöd till gemensamma
diskussioner, kanske i studiecirkelform, vilket i sin tur kan leda
till att man i ökad utsträckning arbetar för en gemensam professionell kunskapsbas.
Forskningsöversikter är ett sätt att sammanställa och väga samman resultaten
från ett stort antal vetenskapliga studier, för att med större säkerhet
kunna ge svar på olika frågeställningar. Det handlar om kunskaper av relevans
antingen för utrednings- och bedömningsarbete eller för behandlingsoch
förbättringsarbete. Det vanligaste syftet med översikter är att visa på
nyttan eller effekterna för brukarna av olika insatser. I dessa fall ger översikten
svar på frågorna: Vad fungerar? Vad fungerar inte? Vad vet vi för lite
om?
Den forskningsöversikt som denna handledning är knuten till är Risk och
prognos i socialt arbete med barn. Forskningsmetoder och resultat, (Gothia
förlag, Stockholm 2003). Författarna, Dagmar Lagerberg och Claes Sundelin,
är båda välkända barnforskare.
Risk och prognos är en mycket omfattande sammanställning av internationell
forskning om barns utveckling. Den handlar om grundprinciper för
vad risker och prognoser är men redovisar även empiriskt material om riskoch
skyddsfaktorer. Översikten är i högsta grad relevant för bedömningsoch
utredningsarbetet inom barn- och ungdomsvården.
Studiehandledningen riktar sig främst till socialtjänstens personal. Tanken
är att den kan utgöra en bas för studier i cirkelform för gemensam kompetensutveckling
i en arbetsgrupp. Självfallet kan handledningen även användas
för egenstudier.
Studiehandledningen har utarbetats av socionom Birgitta Freij, på uppdrag
av IMS. En referensgrupp har lämnat värdefulla synpunkter.
Jag vill å IMS vägnar tacka Birgitta Freij för hennes goda arbete. Tack
också till referensgruppen som har bestått av Birgitta Forsberg, länsstyrelsen
i Uppsala, Jan Ludvigsson, BUP i Fritsla och Heléne Nellvik, socialförvaltningen
i Sigtuna, samt till Dagmar Lagerberg, Akademiska barnsjukhuset
vid Uppsala universitet, Bo Vinnerljung, Ulla Jergeby och Margareta Carlberg,
IMS, Lena Johansson, familjecentralerna i Märsta, Sigtuna kommun
och Ingela Kalin, socialtjänsten i Svenljunga, som i olika faser har medverkat
med synpunkter. Jag vill också tacka Synnöve Ljunggren och Mari Forslund,
båda IMS, som har bearbetat studiehandledningen.
4
Att producera studiehandledningar till forskningsrapporter är ett av flera
sätt som IMS prövar för att nå ut med kunskap till den sociala praktiken. Vi
är därför tacksamma för synpunkter från användarna. Synpunkter kan lämnas
till mari.forslund@socialstyrelsen.se. Studiehandledningen kan laddas
ned från: www.socialstyrelsen.se/IMS
Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit
Meert, K., Thurston, C., & Celia, S.,
(2001)
Abstract
OBJECTIVE:
Parental grief after the death of a child may be influenced by the chronicity of the child's illness, the quality of care provided, and the parents' ability to cope. Our objective is to identify aspects of pediatric intensive care and parental coping that have a favorable effect on parental bereavement outcome.
DESIGN:
Follow-up survey.
SETTING:
University teaching hospital.
PARTICIPANTS:
Fifty-seven parents who experienced the death of their child in the pediatric intensive care unit between January 1, 1995, and June 30, 1998.
INTERVENTIONS:
Parents completed two standardized questionnaires, the Coping Resources Inventory and the Texas Revised Inventory of Grief. The Coping Resources Inventory quantifies five coping resources: cognitive, social, emotional, spiritual, and physical. The Texas Revised Inventory of Grief is a two-part questionnaire that quantifies the intensity of grief at two time points: (1) near the time of death, and (2) in the present. Parents had previously participated in an interview with the investigators that included questions regarding the emotional attitudes of the pediatric intensive care unit staff and the adequacy of information provided during their child's critical illness.
MAIN OUTCOME MEASURES:
Texas Revised Inventory of Grief scores were used as measures of early and long-term grief.
RESULTS:
Parents' whose child died acutely had greater intensity of early and long-term grief than those whose child died of chronic illness (p < 0.05, Mann-Whitney U test). Parents' physical coping resources and the emotional attitudes of pediatric intensive care unit staff predicted the intensity of early grief (R(2) =.27, multiple regression). Parents' cognitive coping resources, the emotional attitudes of staff, and the adequacy of information provided to parents predicted the intensity of long-term grief (R(2) =.42).
CONCLUSIONS:
Parents' physical well-being enables more effective handling of early grief. Parents' understanding of their own self-worth and their child's illness determine long-term adaptation to loss. A caring emotional attitude displayed by pediatric intensive care unit staff has beneficial short-term and long-term effects on parental bereavement.
Parental death during childhood and school performance – a national cohort study
Berg, L., Rostila, M., Saarela, J., & Hjern, A.
(2014)
OBJECTIVES: Parental death during childhood has been linked to increased mortality and mental health problems in adulthood. School failure may be an important mediator in this trajectory. We investigated the association between parental death before age 15 years and school performance at age 15 to 16 years, taking into account potentially contributing factors such as family socioeconomic position (SEP) and parental substance abuse, mental health problems, and criminality.
METHODS: This was a register-based national cohort study of 772 117 subjects born in Sweden between 1973 and 1981. Linear and logistic regression models were used to analyze school performance as mean grades (scale: 1–5; SD: 0.70) and school failure (finished school with incomplete grades). Results are presented as β-coefficients and odds ratios (ORs) with 95% confidence intervals (CIs).
RESULTS: Parental death was associated with lower grades (ORs: –0.21 [95% CI: –0.23 to –0.20] and –0.17 [95% CI: –0.19 to –0.15]) for paternal and maternal deaths, respectively. Adjustment for SEP and parental psychosocial factors weakened the associations, but the results remained statistically significant. Unadjusted ORs of school failure were 2.04 (95% CI: 1.92 to 2.17) and 1.51 (95% CI: 1.35 to 1.69) for paternal and maternal deaths. In fully adjusted models, ORs were 1.40 (95% CI: 1.31 to 1.49) and 1.18 (95% CI: 1.05 to 1.32). The higher crude impact of death due to external causes (ie, accident, violence, suicide) (OR: –0.27 [90% CI: –0.28 to –0.26]), compared with natural deaths (OR: –0.16 [95% CI: –0.17 to –0.15]), was not seen after adjustment for SEP and psychosocial situation of the family.
CONCLUSIONS: Parental death during childhood was associated with lower grades and school failure. Much of the effect, especially for deaths by external causes, was associated with socially adverse childhood exposures.
Sammenhæng i omsorgkæden for demente og deres pårørende - pleje, støtte og aflastning i tiden før plejehjem.
Snell, H. (red).
(1995)
Samordnad tillsyn av vård och omsorg
Socialstyrelsen
(2009)
I maj 2009 beslutade riksdagen att samordna tillsynen av vård och
omsorg i en och samma myndighet. Beslutet innebär att ansvaret för
tillsynen av socialtjänsten förs över från länsstyrelserna till Socialstyrelsen,
som redan är nationell tillsynsmyndighet för hälso- och
sjukvården.
Med en samordnad tillsyn skapas förutsättningar för en enhetlig och
förutsägbar tillsyn, som bättre möter framtida utmaningar där vård
och omsorg blir alltmer involverade i varandra. En samordnad tillsyn
ska också underlätta för allmänheten att hitta rätt när de vill framföra
klagomål och anmäla brister.
Den 1 januari 2010 tar Socialstyrelsen över ansvaret för
• tillsynen av socialtjänstens äldreomsorg, omsorger om personer
med funktionsnedsättning, individ- och familjeomsorg samt
enskild verksamhet enligt socialtjänstlagen (SoL) och lagen om
stöd och service till vissa funktionshindrade (LSS)
• tillsynen av kommunernas verkställighet av beslut och domar
• ansökan om sanktionsavgift
• tillståndsgivning till enskilda verksamheter enligt SoL och LSS
• rådgivning.
Länsstyrelserna kommer att ha fortsatt ansvar för alkohol- och
tobakstillsyn och förebyggande insatser mot alkohol, tobak och
droger. Länsstyrelserna ska också samordna kvinnofridsfrågor och
fördela statsbidrag som rör kvinnofridsfrågor, personliga ombud och
alkohol- och drogförebyggande arbete.
Samordnare för föräldrar till barn med funktionsnedsättning
Interpellation (2012/13:486)
(2012)
den 11 juli
Svar på fråga
2011/12:669 Samordnare för föräldrar till barn med funktionsnedsättning
Statsrådet Maria Larsson
Lennart Axelsson har frågat mig om försöksverksamhet med samordnare för föräldrar till barn med funktionsnedsättning har startats, och om inte, när och var kommer det att ske.
Inledningsvis vill jag understryka vikten av att de brister som fortfarande finns i samordningen av stödet till barn och unga med funktionsnedsättning åtgärdas. Regeringens arbete för att förbättra både informationen och samordningen av stödet till barn och unga med funktionsnedsättning är prioriterat. Det är dock angeläget att de åtgärder som vidtas är effektiva och får avsedd effekt.
Landstingen ansvarar för att erbjuda personer som tillhör personkretsen för LSS, det vill säga lagen (1993:387) om stöd och service till vissa funktionshindrade, rådgivning och annat personligt stöd (se 9 § 1 p. LSS). Insatsen innefattar kvalificerade insatser av rådgivande och allmänt stödjande karaktär från flera olika kompetenskategorier som behövs för att underlätta det dagliga livet för den enskilde och dennes anhöriga. Insatserna kan vara såväl medicinska, psykologiska, sociala som pedagogiska. I förarbetena till bestämmelsen om rådgivning och annat personligt stöd (prop. 1992/93:159, s. 59 f.) betonas särskilt behovet av stöd för den dagliga livsföringen hos såväl föräldrar till ett barn med funktionsnedsättning som barn och unga med funktionsnedsättning och deras anhöriga. Vikten av allsidiga och samordnade insatser betonas härvidlag.
Socialstyrelsen fördelar årligen medel till landstingen för ovanstående insats. För innevarande år disponerar Socialstyrelsen 94 500 000 kronor att fördelas till landstingen på grundval av antalet invånare i respektive landsting (se närmare statsbudgetens utgiftsområde 9 Hälsovård, sjukvård och social omsorg, anslag 4:2, anslagsposten 1 Rådgivning och annat stöd).
För att så långt möjligt säkerställa att en försöksverksamhet med samordnare ska få avsedd effekt och kunna finansieras inom ramen för befintliga medel vill regeringen först kartlägga hur tilldelade anslag för landstingens insatser för råd och annat personligt stöd används i dag och för vilka ändamål. Vidare är det angeläget att inventera de goda exempel som finns på fungerande samverkan mellan olika kompetenskategorier för att erbjuda råd och annat stöd till enskilda enligt intentionerna i LSS. De goda exemplen kan sedan tjäna som utgångspunkt för förslag till utformning av försöksverksamhet. Regeringen avser därför inom kort att ge Socialstyrelsen i uppdrag att genomföra en sådan kartläggning samt föreslå hur en försöksverksamhet med samordnare för barn och unga med funktionsnedsättning samt deras anhöriga skulle kunna bedrivas inom ramen för ovan angivet anslag och syfte. Samordnarens uppgift bör vara att underlätta samverkan mellan olika aktörer för att förbättra samordningen av samhällets stöd till familjer med barn och unga med funktionsnedsättning.
När Socialstyrelsen har redovisat sina förslag kommer sedan regeringen att ta ställning till när och var en försöksverksamhet kan startas.
Samordnare för föräldrar till barn med funktionsnedsättning
Interpellation
(2012)
av Lennart Axelsson (S)
till statsrådet Maria Larsson (KD)
Familjer som har barn med funktionsnedsättning har varje år kontakt med i genomsnitt 17 personer kring sitt barns funktionsnedsättning och de insatser som barnet behöver. Det visade Riksförbundet för rörelsehindrade barn och ungdomar (RBU) 2008 i rapporten Men dom har ju fått det så bra!? .
Det finns föräldrar som måste ha upp till 90 myndighetskontakter, något som tar både tid och kraft. RBU har sedan 2008 drivit kravet att familjer med barn med funktionsnedsättning ska få hjälp av en särskild hjälpsamordnare. De har fått stöd av många andra. Socialdemokraterna har i riksdagen drivit frågan om försöksverksamhet med samordnare.
År 2011 konstaterade även Riksrevisionen att föräldrar till barn med funktionsnedsättning bär en tung börda med att samordna stöd som barnen får från olika håll och föreslog därför en försöksverksamhet och med särskilda samordnare.
Riksdagens socialutskott konstaterade att samordningsproblemen var stora och skrev i ett betänkande som antogs av riksdagen hösten 2011 att: "Utskottet har fått veta att regeringen har för avsikt att påbörja en försöksverksamhet med samordnare. Utskottet förutsätter att försöksverksamheten ges hög prioritet och påbörjas under 2012."
Såvitt jag vet har inte statens försöksverksamhet startat.
Med anledning av detta vill jag fråga statsrådet:
Varför har inget hänt trots att 1,5 år har gått sedan beslutet?
När kommer försöksverksamheten i gång?
Varför har inte riksdagen informerats om att försöksverksamheten inte har startat?
Samordning av stöd för barn och ungdomar med flerfunktionsnedsättning och deras familjer
Ylvén Regina
(2015)
Syftet med kunskapsöversikten är att undersöka kunskapsläget om samordning av stöd till föräldrar med barn med flerfunktionsnedsättningar. Forskning visar att livet för familjer där barnen har omfattande funktionsnedsättningar är påfrestande och att kraven på föräldrarna många gånger är så stora, att föräldrarna inte kan leva som andra föräldrar och familjen som andra barnfamiljer. Föräldrastöd finns i olika former, både generellt och riktat, men det föräldrastöd som föräldrar med barn med funktionsnedsättningar efterlyser innebär något helt annat och behöver måste därmed vara anpassat för denna målgrupp. Ämnet för kunskapsöversikten, samordnat föräldrastöd, i relation till målgruppen barn med flerfunktionsnedsättningar och deras familjer är ett område som vi på förhand vet att det finns mycket lite skrivet om. Kunskapsöversikten tar sin utgångspunkt i hur resonemanget förts kring samordning av stöd till föräldrar med barn med funktionsnedsättningar mellan politiker, myndigheter och andra aktörer. I denna kunskapsöversikt har samordning av stöd till barn och ungdomar med omfattande funktionsnedsättningar och deras familjer
beskrivits ur olika perspektiv. Behovet av ett samordnat föräldrastöd för familjer med barn och ungdomar med omfattande funktionsnedsättningar är stort. Kunskapsöversikten visar varför ett samordnat föräldrastöd är betydelsefullt och att det finns olika modeller för hur samverkan kan ske över myndighets-, verksamhets-, och professionsgränser oavsett huvudman. Därutöver behövs oberoende samordnare som har ett övergripande samordningsansvar och inte är kopplade till någon specifik verksamhet. Kunskapsöversikten avslutas med exempel på några intressanta utvecklingsprojekt som arbetar med att öka samordning av
stöd eller underlätta tillgängligheten av stöd till familjer med barn med funktionsnedsättningar.
Samordning för barn och unga med funktionsnedsättning - kartläggning av anslag för råd och stöd och föräldrars behov av information
Socialstyrelsen
(2012)
Samspel och konfrontation
Bergh, A.
(2004)
Samspråk. Stöd i kommunikation tillsammans med barn med synnedsättning i kombination med ytterligare funktionsnedsättningar
Gustafsson, I., Tobiason-Jackson, G., Edlund, MB.
(2012)
Samspråk. Stöd i kommunikation tillsammans med barn med synnedsättning i kombination med ytterligare funktionsnedsättningar
Tobiasson Jackson, G., Gustafsson, I. & Edlund, M.
(2013)
Screening for DSM-IV externalizing disorders with the Child Behavior Checklist: A receiver-operating characteristic analysis
Hudziak JJ, Copeland W, Stanger C, Wadsworth M.
(2004)
BACKGROUND:
This study examines the diagnostic accuracy of the CBCL syndrome AS scales for predicting DSM-IV Attention Deficit-Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder with or without Conduct Disorder (ODD/CD).
METHODS:
The sample included 370 children (187 probands and 183 siblings) participating in a family genetic study of attention and aggressive behavior problems. Univariate and stepwise logistic regression analyses were used to derive models for predicting two diagnostic conditions: ADHD and ODD/CD.
RESULTS:
The Attention Problems syndrome significantly predicted ADHD, and ODD/CD was significantly predicted by the Aggressive Behavior syndrome. Both scales demonstrated good diagnostic accuracy, as assessed through receiver operating characteristics analyses. Cut-point analyses confirmed the utility of low T-scores, 55 on the respective syndromes, for efficiently discriminating cases from noncases.
CONCLUSIONS:
CBCL syndromes display good diagnostic efficiency for assessing common externalizing disorders in children.
Screening test for identifying adolescents adversely affected by a parental drinking problem
Biek JE.
(1981)
It is believed that 28 million children nationally are affected adversely by parental alcoholism. To help them, we must identify them. A screening tool was developed and tested to identify adolescents experiencing difficulties because of a parents's drinking problem. The single question, "Has the drinking of either parent created any problem for you?", was given in a medical screening inventory at a teenage clinic. This was followed by an eight-question semistructured interview. Of the 37 patients screened, 57% had high interview scores, suggesting that a parent's drinking had created a problem for them. Their substantiating information was consistent with the literature describing the effects of alcoholics on their children. In contrast, those with low or medium scores consistently reported no problem because of a parent's drinking. High scorers had nearly twice as many somatic symptoms and health concerns as those not reporting a problem with parental drinking. Based on the high percentage of adolescents adversely affected by a parental drinking problem and the patients' responsiveness to specific direct questions, this type of semistructured interview may be useful as a teenage intake interview in a variety of settings. Such screening could allow early referral and interventions to treat the family in which there is alcohol abuse, this promoting healthier psychosocial development. This might also decrease the adolescent's risk of abusing alcohol. Such screening may help the physician to place vague, somatic complaints in a more meaningful perspective. Our method is a quick, brief screen for a common but easily overlooked, potentially serious family problem.
Screening test for identifying adolescents adversely affected by a parental drinking problem
Biek JE.
(1981)
It is believed that 28 million children nationally are affected adversely by parental alcoholism. To help them, we must identify them. A screening tool was developed and tested to identify adolescents experiencing difficulties because of a parents's drinking problem. The single question, "Has the drinking of either parent created any problem for you?", was given in a medical screening inventory at a teenage clinic. This was followed by an eight-question semistructured interview. Of the 37 patients screened, 57% had high interview scores, suggesting that a parent's drinking had created a problem for them. Their substantiating information was consistent with the literature describing the effects of alcoholics on their children. In contrast, those with low or medium scores consistently reported no problem because of a parent's drinking. High scorers had nearly twice as many somatic symptoms and health concerns as those not reporting a problem with parental drinking. Based on the high percentage of adolescents adversely affected by a parental drinking problem and the patients' responsiveness to specific direct questions, this type of semistructured interview may be useful as a teenage intake interview in a variety of settings. Such screening could allow early referral and interventions to treat the family in which there is alcohol abuse, this promoting healthier psychosocial development. This might also decrease the adolescent's risk of abusing alcohol. Such screening may help the physician to place vague, somatic complaints in a more meaningful perspective. Our method is a quick, brief screen for a common but easily overlooked, potentially serious family problem.
Se mig! Hör mig! Förstå mig
Gunnel Winlund, Susanne Rosenström Bennhagen
(2004)
Kunskapen och engagemanget hos omgivningen är livsviktiga för personer med grav utvecklingsstörning. De är helt beroende av andra. Fram tills nu har det saknats ett grundläggande, samlat kunskaps- och
arbetsmaterial om vuxna personer med grav utvecklingsstörning. Boken bygger på kunskaper som utvecklats inom olika forsknings-och utvecklingsprojekt. Teori omvandlas till praktik genom talrika
vardagsexempel. Några områden som boken tar upp: Helhetssyn, normalisering, miljöns betydelse, problembeteende, begåvning, kommunikation, självständighet och lärande.
Se mig! Hör mig! Förstå mig!
Gunnel Winlund
(2004)
För personer med grav utvecklingsstörning är kunskapen och engagemanget hos omgivningen livsviktig. De är beroende av att andra ser dem, hör dem och förstår dem. Filmen bygger på kunskap från olika forsknings- och utvecklingsprojekt och den visar teori omvandlat till praktik i många vardagsexempel.
Till denna film finns även en bok med samma namn.
Äldre iraniers och anhörigas syn på vården och omsorgen (Anhörig 300).
Madani, M.
(2002)
Äldre människors upplevelser av att vara beroende av vård. C-uppsats
Broström, S.
(2009)
Äldre och personer med funktionsnedsättning – regiform m.m. och vissa insatser år 2010. Kommunala insatser enligt socialtjänstlagen
Socialstyrelsen
(2011)
Äldre personer med sjukdom och närståendes upplevelse av televård som stöd i hemmet : En litteraturstudie [elektronisk resurs] C-uppsats
Nordmark, S., & Svedberg Lindqvist, A.-L.
(2007)
Äldre personers sista tid i livet : livskvalitet, vård, omsorg och närståendes situation
Andersson, M.
(2007)
The aim of this thesis was to investigate old people's care and quality of life during the last period of life, but also to investigate their own and next-of-kin's experience of this phase. The thesis is based on four studies using separate samples. The sample (n=1198) in study I was drawn from the care and services part of the sub-study ?Good Aging in Skåne? (GAS). The criteria for inclusion in study I were: being 75 years and older having died during the years 2001?2004 and having received public care and services at home or in special accommodation. The study sample in study II comprised 411 people being 75 years and older of whom fifty of the respondents (the study group) had died one year after data collection, the 361 survivors were considered a comparison group. In study III, 17 people aged 75 years or older, who received municipal help and/or care and had a life-threatening disease and/or received palliative care, were interviewed. In study IV 17 next-of-kin's of people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life, were interviewed. Quantitative descriptive statistics, comparative statistics and logistic regression analysis, but also qualitative content analysis, were used when analysing the data. The results showed that in the last year of life, 82% of those living at home and 50% of those living in special accommodation were hospitalised. The results also showed that those living at home and those with several hospital stays more often died in hospital than those living in special accommodation and those with fewer hospitals stay. More visits to physicians in outpatient care predicted death in hospital, while living in special accommodation and PADL dependency predicted death outside hospital (Paper I). The results in paper II showed that the study group had a lower QoL than the comparison group. Factors that effected the quality of life negatively were more admissions to hospital and a larger number of health complaints. The analysis showed that factors predicting mortality were older age and more health complaints. The older persons? experience of their situation could be understood as Turning inwards to come to peace with the past, the present and approaching death while being trapped by health complaints. Six categories embraced the experience of aspects that constitute a good life in the last phase of life; Maintaining dignity, Enjoying small things, Feelings of ?being at home?, Being in the hands of others, trying to adjust, Still being important for other people and Completing life while facing death (Paper III). The next of kin's experience of this situation could be understood as Being a companion in the transition towards an inevitable death feeling of having the major responsibility and needing to be acknowledged by professionals, which included the categories: Being a companion on the path to death; Focusing on the needs of the dying person, and making adjustments to everyday life; Feeling the major responsibility, and Gaining strength from support. The results showed that older peoples? last phase of life is coloured by health complaints and frequent visits to hospital, which in turn affects their quality of life. Their own experience of this situation was being in the hands of several care providers, and trying to adjust to the situation. To provide high quality care in this phase it is important to increase the co-operation between various care providers. It also seems important for older people to have the possibility to enjoy the small things in life, being able to still be involved in the world around, and to be supported to complete life in order to achieve peace of mind. As the next-of-kin are involved in the care and are emotionally affected by the situation, their needs for support should also be acknowledged. This means they need to be seen by the professionals as well as by others around in order to retain their sense of participation, even when professional care providers are involved.
Äldre utanför äldreomsorgen
Gunnarsson, E.
(2002)
Äldres psykiska ohälsa -en fördjupad lägesrapport om förekomst, verksamheter och insatser. Artikelnr 2008-131-20
Socialstyrelsen
(2008)
I dag lider cirka 20 procent av alla äldre personer av psykisk ohälsa. Inom en snar framtid är 25 procent av alla svenskar 65 år och äldre, vilket gör psykisk ohälsa till en av våra största folksjukdomar.
Rapporten Ökat stöd till äldres med psykisk ohälsa redovisar Socialstyrelsens aktiviteter för att stödja arbetet med att uppmärksamma och arbeta med äldres psykiska ohälsa. Rapporten ger också förslag på fortsatta åtgärder för att stödja arbetet. Som bilagor finns tre vägledningdokument för olika professioner:
Vägledning för verksamhetsansvariga inom socialtjänst, kommunal hälso- och sjukvård samt primärvård'
Vägledning till att uppmärksamma äldre med psykisk ohälsa inom primärvården
Vägledning för att uppmärksamma äldre med psykisk ohälsa inom socialtjänst och kommunal hälso- och sjukvård
Grundläggande kunskaper hos personal
Socialstyrelsen har även tagit fram allmänna råd som ska visa vilka kunskaper personal som arbetar med äldre bör ha.
Nationell satsning på baskompetens
Under 2011 – 2014 pågick en satsning, det så kallade Omvårdnadslyftet, för att stärka personalens baskunskaper om bland annat äldres psykiska ohälsa.
Socialstyrelsen publicerade även en vägledning om kunskapsområden för specialiserade arbetsuppgifter inom äldreomsorgen som bland annat behandlar kunskaper som kan krävas för att arbeta med äldre med psykisk sjukdom.
Äldres upplevelse av IT och isolering i samband med ACTION- användande. (C-uppsats)
Löf, J., & Tuvskog, A.
(2009)
Äldres önskemål om vård och omsorgsgivare
Andersson, L.
(2002)
Äldrevårdscentralen i Solna : intervjuer med personal och samverkanspartners
Hagman, L.
(2007)
Ändlös omsorg och utmätt hälsa – föräldraskapets paradoxer när ett vuxet barn har långvarig psykisk sjukdom. Akad. avh.
Johansson, Anita
(2014)
Avhandlingens övergripande syfte är att fördjupa kunskapen om att vara förälder till vuxet barn med långvarig psykisk sjukdom. Delstudiernas speciella syften är:
Att beskriva hur mammor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag.
Att beskriva hur pappor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag
Att beskriva hur förälder till vuxet barn med psykisk sjukdom uppfattar den psykiatriska vården.
Att undersöka en grupp mammor och pappor till vuxet barn med långvarig psykisk sjukdom i Sverige och deras hälsorelaterade lisvkvalitet i förhållande till en normalpopulation, deras självskattade symptom på ångest, depression och belastning samt erfarenheter av möten med den psykiatriska vården.
The Youth Srlf-Report Hostility Scale
Cook C.
(1986)
Their Story, My Story: Health of Older Men as Caregivers
Russell, R.
(2008)
Their Story, My Story: Health of Older Men as Caregivers
Russell, R.
(2008)
Themes in family care-giving: implications for social work practice with older adults
Sims-Gould, J. & Martin-Matthews, A.
(2008)
Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen
Åman, K.
(2006)
Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.
Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.
Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.
Nyckelord: Specialpedagogik, pedagogisk kompetens, barn- och ungdomshabilitering, kunskapsområden, verksamhetsfält, yrkesspråk, talgenrer, fokusgrupper, metaforer, tidig intervention, anpassat vardagligt språk, fronesis.
Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen
Åman, K.
(2006)
Doktorsavhandling i pedagogik
Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.
Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.
Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.
- See more at: http://www.skolporten.se/forskning/avhandling/ogonblickets-pedagogik-yrkesgrupper-i-samtal-om-specialpedagogisk-kompetens-vid-barn-och-ungdomshabiliteringen/#sthash.JQdaHFR7.dpuf
Tidiga insatser mot psykisk ohälsa hos små barn – en sammanställning av systematiska översikter
Socialstyrelsen
(2013)
I rapporten redovisas kunskap om metoder och modeller för barnhälsovårdens arbete med att förebygga och ge tidiga insatser mot psykisk ohälsa hos barn 0–5 år. Rapporten är baserad på systematiska kunskapsöversikter som är publicerade i internationella vetenskapliga tidskrifter.
Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering
Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G.
(2012)
Denna rapport presenterar evidens för insatser till barn i förskoleåldern på tidig kommunikativ nivå med syfte att ge rekommendationer till svensk habiliteringsverksamhet. Utifrån en formulerad fiktiv frågeställning utförde gruppen sökningar i vetenskapliga databaser. Några svenska rapporter och magisterarbeten har också inkluderats i granskningen.
Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering
Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G.
(2012)
Gunilla Thunberg, logoped och fil Dr på DART har på updrag av Sveriges Habiliteringschefers förening lett en grupp som sammanställt evidens för tidiga språk- och kommunikationsinsatser till förskolebarn inom barnhabilitering. Gruppen är nu färdig med sitt arbete och den 1/4 publicerades rapporten och rekommendationerna på Sveriges Habiliteringsschefers förenings hemsida. Det finns mycket spännande att ta del av när det gäller tidiga AKK-insatser så missa inte denna viktiga rapport! Du hittar den och kan ladda ner den här:
Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering
Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G.
(2012)
Föreningen Sveriges Habiliteringschefer har som uppgift att verka för en utveckling av habiliteringsverksamheten för barn, ungdomar och vuxna utifrån de övergripande mål som beskrivs i hälso- och sjukvårdslagen, lagen om särskilt stöd och service till vissa funktionshindrade samt föreskriften God Vård, SOSFS 2005:12. Föreningen ska på olika sätt stimulera forsknings- och utvecklingsarbete. Våra verksamheter riktar sig till en grupp barn, ungdomar och vuxna i samhället med stora och komplicerade behov.
Föreningen har en ambition att gemensamt utveckla en kvalitetssäker och effektiv verksamhet. Effektivitet kan ses ur en traditionell kostnadsaspekt men också ur barnet/den vuxnes och anhörigas levnadsaspekt.
Det finns en flora av interventioner. Inom ett flertal områden behöver metoder, arbetssätt och behandlingsresultat för barn, ungdomar och vuxna med funktionsnedsättningar beskrivas och dokumenteras. För att med största möjliga säkerhet veta vad som ska utvecklas och vad som ska avvecklas krävs ett nationellt samarbete. 2001 initierades därför ett projekt som fick namnet Evidens Baserad Habilitering (EBH). Syftet var att pröva en nationell arbetsmodell bestående av övergripande arbetsgrupper med uppgift att granska olika interventioners evidens. Projektet har med tiden övergått till att bli ett vedertaget arbetssätt när det gäller att ta fram evidensläget för ett interventionsområde. Detta är den sjunde arbetsgruppen där arbetsmodellen har använts.
Arbetsgruppens uppgift har varit att:
göra en litteraturöversikt över aktuell forskning och erfarenhetsbaserade resultat avseende tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering,
utifrån överenskomna kriterier kritiskt granska de utvärderingar och studier som publicerats,
på ett lättfattligt sätt göra erhållna resultat tillgängliga i en rapport.
Rapporten var färdig i februari 2011 och en revidering är gjord september 2012.
Föreningen Sveriges Habiliteringschefer ställer sig bakom de rekommendationer som arbetsgruppen lagt fram. Rapporten bidrar till en fördjupad kunskap.
Ett stort tack till Anna Blomgren, Barbara Eberhart, Jessika Forsberg, Lena Nilsson, Maria Nolemo och Gunilla Thunberg för att ni med lust, energi och stort engagemang har gripit er ann uppgiften. Genom er granskning tydliggörs också behovet av fortsatta studier för att säkra en habilitering på säker grund.
Göteborg 2012-11-05
Anna Kågeson
Styrgruppen Evidensbaserad habilitering
Föreningen Sveriges Habiliteringschefer
Till alle døgnets tider. Tidsbruk 1971-2000.
Vaage, O.
(2002)
till anhöriga i Uppsala kommun – en kartläggning, Delrapport 1, FoU-rapport 2012/5.
Winqvist, M.
(2012)
I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. För att dra lärdom utvecklingsarbetet har Nationellt
kompetenscentrum anhöriga (Nka) tagit initiativ till denna undersökning för att i samverkan
med åtta av landets FoU-enheter kartlägga och följa utvecklingen av stödet till anhöriga under
tre år i åtta kommuner.
Syftet med studien är att:
- Kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras, följs upp
och utvärderas inom områdena äldre, funktionshinder och individ- familjeomsorg samt
samverkan mellan kommun, landsting, ideella organisationer och andra aktörer inom
området.
- Undersöka hur de olika huvudintressenterna bedömer kvaliteten på stödet till anhöriga
- Under tre år följa utvecklingen i de kommuner/kommundelar som ingår i studien.
Stödet till anhöriga i de utvalda kommunerna har kartlagts år 2010 och år 2013 genom att ta
del av tillgängliga dokument, kommunernas hemsida och informationsblad samt intervjuer
med och enkätutskick till chefer och andra nyckelpersoner. Genom en enkätstudie med
uppföljande telefonintervjuer har anhörigas situation och syn på sitt stöd, undersökts vid två
tillfällen. Årligen genomfördes fokusgruppsintervjuer, en inom vardera äldre-,
funktionshinder- samt individ och familjeområdet med syftet att beskriva och följa
utvecklingen av stödet till anhöriga; vad som fungerade bra och mindre bra. I varje
fokusgrupp ingick personal, beslutsfattare och representanter från ideella sektorn.
I denna delrapport, som också är slutrapport för hela projektet, presenteras resultatet för den
sista kartläggningen, gällande år 2013. Utvecklingen av anhörigstödet under de senaste åren
beskrivs också genom en jämförelse av resultaten från de olika kartläggningarna.
Tyngdpunkten i denna sammanfattning ligger på denna jämförelse.
Resultat
Det har inte skett några omvälvande förändringar i anhörigstödet i Uppsala kommun som
helhet under åren 2010 till 2013, men utvecklingen har inte stått stilla. Medvetenheten om
vikten av ett anhörigperspektiv hade på flera håll ökat.
Anhörigcentrum genomgick under tidsperioden en stor organisationsförändring.
Verksamheten bedrevs under två år som projekt, för att sedan fortsätta med ettåriga avtal i
väntan på beslut om eventuell konkurrensutsättning. Kunskapen om Anhörigcentrums
existens ökade under undersökningsperioden i kommunen och allt fler anhöriga sökte sig dit.
Målgruppen förändrades genom att också inkludera anhöriga till personer på boenden.
Anhöriga till äldre personer var fortfarande den största målgruppen, men en ökning av
anhöriga till yngre personer och framför allt från psykiatri och socialpsykiatri kunde noteras.
Utformningen av stödet till anhöriga var i stort densamma, men förändrades i viss mån till
exempel genom att anhöriggrupperna vände sig till andra målgrupper, rekreationshelger
infördes och anhöriga fick möjlighet till juristhjälp. Behovsinventeringar gjordes årligen, men
på lite olika sätt och med olika fokus. Anhörigcentrum ingick vid tiden för kartläggning två i
kommunens Nöjd-Kund-Index. Samverkan med landstinget utvecklades under tidsperioden
med t.ex. bemanning av "anhörighörna" på Akademiska sjukhuset och Anhörigcentrum hade
också tagit en aktiv del i landstingets projekt för utveckling av anhörigstöd.
8
I Äldrenämndens uppdragsplaner var effektmålen desamma för anhörigstödet under
uppföljningstiden, men målvärdena för antalet personer som skulle använda sig av
anhörigstödet (läs Anhörigcentrum) ökade från år till år. I förfrågningsunderlaget gällande
hemvård hade nya ska-krav införts under en egen rubrik; Anhörigvänlig vård och omsorg.
Inom hemvården hade också anhöriga börjat uppmärksammas genom anhörigträffar
information med mera. Inom vård- och omsorgsboendena fortsatte anhörigstödet
huvudsakligen inom den palliativa och avancerade sjukvården, men nytt var att Silviasystrar
inom åtminstone ett annat boende hade introducerat anhöriggrupper. Ett omfattande
värdegrundsarbete genomfördes inom äldreomsorgen som också inkluderade anhörigfrågor.
I förfrågningsunderlagen för upphandling av LSS-boendeenheter hade år 2013 infogats, under
rubriken Anhöriga, specifika ska-krav rörande anhöriga som inte hade funnits tidigare. Inom
Affärsområde assistans hade en grupp chefer i utvecklingssyfte börjat arbeta med
anhörigfrågor och anhörigas delaktighet. Verksamheten för anställda anhöriga bedrevs med
höga ambitioner och engagemang. Affärsområdeschefen i Affärsområde barn, ungdom &
familj beklagade bristen på stöd till anhöriga till personer under 21 år. Några insatser inom
verksamheten hade blivit mer flexibla bland annat för att underlätta för anhöriga. Arbete med
Samordnad individuell plan (Sip) infördes under uppföljningstiden och detta trodde många
skulle underlätta anhörigas situation.
I måldokument från de båda åren lyftes helhetsperspektiv och familjens roll fram på likartat
sätt inom individ- och familjeområdet. I kommunens drogpolitiska program nämndes
anhöriga som målgrupp för verksamheten. Viktiga stödinsatser erbjöds under hela den
undersökta tidsperioden inom Råd- och behandlingsgruppen, Trappan och familjeenheterna.
Inom Affärsområde socialpsykiatri & beroende hade en ny form av utbildning skapats. Den så
kallade återhämtningsakademin som ämnade samla brukare, personal och anhöriga i
gemensamma utbildningar.
Resultaten från enkäten till de anhöriga skiljer sig inte i någon större omfattning mellan de
båda studerade åren. Det är relativt stora andelar av respondenterna som beskriver en
problematisk livssituation och resultaten antyder också att det är de känslomässiga
dimensionerna som kan kräva ytterligare stödinsatser.
Det mest slående resultatet i de båda intervjuundersökningarna var att de anhöriga var nöjda
med det stöd som de hade fått. Framför allt gällde detta Anhörigcentrums verksamhet.
Rapporten avslutas med en begreppsdiskussion. Orden anhöriga, närstående, anhörigstöd med
flera används på olikartade sätt. För att kunna beskriva, följa, jämföra och inte minst utveckla
innehållet i stödet till anhöriga krävs att begreppsapparaten utvecklas. Fördelar och nackdelar
med ett specialiserat centraliserat anhörigstöd i jämförelse med ett integrerat decentraliserat
stöd diskuteras vidare och vikten av att ett anhörigperspektiv och anhörigstöd implementeras i
hela socialtjänsten betonas. För detta krävs bland annat att anhörigfrågorna finns med i
styrdokumenten på alla nivåer och att utbildningsinsatser genomförs.
Uppsala kommun har i en nationell jämförelse legat långt framme i anhörigfrågor under en
lång tid. Klimatet för att bygga upp och utveckla ett (specialiserat) anhörigstöd har varit gott.
En förhoppning är att den positiva trenden kommer att fortsätta i vetskapen om att mycket
hitintills är gjort, men att de svåraste uppgifterna kanske återstår; att se till att
anhörigperspektiv och anhörigstöd integreras inom hela socialtjänsten.
Till dig som vårdar en anhörig eller närstående
Stockholms stad
(2007)
Till mångas nytta: om behovet av ett nationellt kunskapscenter för frågor om flera och omfattande funktionsnedsättningar
Borgström, Eva & Carlberg, AnnCharlotte
(2010)
Rapport från Allmänna Arvsfonden och FUB: för barn, unga och vuxna med utvecklingsstörning
Tillgång eller bromskloss? Om samverkan med anhöriga inom psykistriska verksamheter i kommuner och landsting
Winqvist, M.
(2013)
Den studie som här presenteras har som syfte att undersöka personalgruppers syn på anhöriga och deras roll inom psykiatriska verksamheter i kommuner och landsting. Den erhållna kunskapen skall ligga till grund för planering av kompetensutvecklande insatser.De frågeställningar som behandlas i undersökningen är:
- Vilka erfarenheter finns av samverkan/möten med anhöriga?
- Hur ser personal på samverkan med anhöriga och anhörigas roll för brukare/patienter och verksamhet.
- Vilka kunskapsbehov finns gällande samverkan med anhöriga?
Ostrukturerade gruppintervjuer genomfördes med nio personalgrupper. Sammanlagt intervjuades tre grupper inom boendestöd, två grupper vid boenden, två grupper inom öppenvården, en individuell intervju inom slutenvården samt en grupp representerande träffpunkter. I denna rapport presenteras det empiriska materialet.
Tillgång eller bromskloss? Om samverkan med anhöriga inom psykistriska verksamheter i kommuner och landsting
Winqvist, M.
(2013)
Den studie som här presenteras har som syfte att undersöka personalgruppers syn på anhöriga och deras roll inom psykiatriska verksamheter i kommuner och landsting. Den erhållna kunskapen skall ligga till grund för planering av kompetensutvecklande insatser.De frågeställningar som behandlas i undersökningen är:
- Vilka erfarenheter finns av samverkan/möten med anhöriga?
- Hur ser personal på samverkan med anhöriga och anhörigas roll för brukare/patienter och verksamhet.
- Vilka kunskapsbehov finns gällande samverkan med anhöriga?
Ostrukturerade gruppintervjuer genomfördes med nio personalgrupper. Sammanlagt intervjuades tre grupper inom boendestöd, två grupper vid boenden, två grupper inom öppenvården, en individuell intervju inom slutenvården samt en grupp representerande träffpunkter. I denna rapport presenteras det empiriska materialet.
Tillgång till habilitering och rehabilitering för barn och ungdomar med funktionshinder. Uppföljning och utvärdering, 2003-103-2.
Socialstyrelsen
(2003)
Socialstyrelsen har haft regeringens uppdrag att kartl‰gga p vilket s‰ttlandstingens barn- och ungdomshabilitering ‰r tillg‰nglig fˆr barn och ung-domar i olika Âldrar med olika funktionshinder. Fˆr att skapa underlag fˆrarbetet har enk‰ter riktats till landstingen och till barn/ungdomar med fa-miljer som under fˆrsta halvÂret 2002 hade habiliteringsinsatser. En kvalita-tiv studie som omfattar tio familjer har ocks gjorts. Markˆr AB, ÷rebro haransvarat fˆr insamlingen och sammanst‰llningen av materialet, som finnspublicerat i tv rapporter.UtifrÂn den genomfˆrda enk‰ten till barn/ungdomar med familjer kan So-cialstyrelsen konstatera att mÂnga barn och ungdomar med funktionshinderfÂr en bra habilitering och rehabilitering. MÂnga ‰r nˆjda bÂde med innehÂll,omfattning, bemˆtande, inflytande och mˆjligheter att pÂverka. Men Social-styrelsen kan ocks konstatera att de brister som tidigare studier har visatfortfarande kvarstÂr. TillgÂngen till habilitering/rehabilitering ‰r oj‰mnt fˆr-delad, bÂde mellan olika delar i landet och mellan olika grupper av funk-tionshinder.Sammantaget ˆver landet tas alla grupper av barn/ungdomar med funk-tionshinder emot av landstingen fˆr habilitering, men en grupp som p ettst‰lle har god tillgÂng till habilitering kan i en annan del av landet saknaviktiga insatser. ƒven inom ett och samma landsting fˆrekommer betydandevariationer.TillgÂng till habilitering och rehabilitering. Grupper som vanligen hartillgÂng till habilitering/rehabilitering ‰r barn och ungdomar med utveck-lingsstˆrning, med rˆrelsehinder och med neurologiska skador och sjukdo-mar. Barn/ungdomar med brister i tillgÂng till habilitering ‰r framfˆr allt demed funktionsneds‰ttningar till fˆljd av ADHD, autismliknande tillstÂndoch autism. Barn med flera funktionshinder, medicinska funktionshinderoch vissa kommunikationshinder, t.ex. synskada och talsvÂrigheter, fÂr inteheller sina behov av habilitering/rehabilitering tillr‰ckligt v‰l tillgodosedda.Brist p underlag. Landstingen genomfˆr inga kartl‰ggningar fˆr attkunna redovisa och fˆlja vilka barn/ungdomar som har behov av habilite-ring/rehabilitering, hur mÂnga de ‰r, vilken Âlder de har eller vilka typer avfunktionshinder det ‰r frÂga om och hur behoven ser ut.Landstingen kan inte redovisa vilka resurser som riktas till habilite-ring/rehabilitering fˆr barn och ungdomar, varken i pengar eller personal.Inflytande och mˆjlighet att pÂverka. Den enskildes mˆjligheter att pÂ-verka sin habilitering/rehabilitering ‰r begr‰nsade. S‰rskilt tycks detta g‰llabarn vars fˆr‰ldrar inte ‰r fˆdda i Sverige, har lÂg utbildning och/eller lÂginkomst.Individuell habiliteringsplan. Individuella planer enligt h‰lso- och sjuk-vÂrdslagen anv‰nds s‰llan om man ser till landstingens alla verksamheter. Ifˆrsta hand ‰r det den verksamhet som ben‰mns barn- och ungdomshabilite-ring som arbetar med individuell habiliterings/rehabiliteringsplan.
8Samverkan. Det finns brister i samverkan, bÂde internt inom landstingenoch externt mellan landstingens olika verksamheter och t.ex. skolan.Rutiner fˆr kvalitetsutveckling saknas. MÂnga kliniker saknar doku-menterade rutiner fˆr att samla in information och synpunkter frÂn bar-nen/ungdomarna och deras familjer.Information. Familjerna anser ofta att den information som de fÂr frÂnlandstingen ‰r bristf‰llig.Bemˆtande. MÂnga fˆr‰ldrar upplever att det stˆd de fÂr ‰r otillr‰ckligt.Minst nˆjda med den habilitering de fÂr ‰r familjer d‰r barnet/ungdomen harflera funktionshinder. I undersˆkningen framtr‰der tydligt fˆr‰ldrarnask‰nsla av att sj‰lva tvingas vara drivande fˆr att f det stˆd som de behˆver.Personal. Fortfarande saknas tillgÂng till insatser frÂn flera yrkesgrupperfˆr att habilitering fˆr barn och ungdomar skall fungera v‰l, framfˆr alltlogopeder, men ocks psykologer, l‰kare, kuratorer och sjukgymnaster.Socialstyrelsen anser att habilitering/rehabilitering bˆr f en starkarest‰llning inom h‰lso- och sjukvÂrden.Socialstyrelsen bedˆmer att den lagstiftning som finns ‰r tillr‰cklig underfˆruts‰ttning att den till‰mpas. Socialstyrelsen bedˆmer att ytterligare utred-ning av omrÂdet i nul‰get inte skulle gagna barn och ungdomar med funk-tionshinder.Socialstyrelsen anseratt landstingen fˆr att kunna planera sin h‰lso- ochsjukvÂrd med utgÂngspunkt i befolkningens behov regelbundet bˆr genom-fˆra kartl‰ggning av vilka grupper av barn/ungdomar med funktionshindersom finns och hur deras behov ser ut.Landstingens olika verksamheter bˆr av ledningen ges tydliga uppdragom vilka grupper av funktionshindrade som de har ansvar fˆr.SjukvÂrdshuvudm‰nnen bˆr i forts‰ttningen redovisa vilka insatser somfinns fˆr olika grupper av funktionshinder i en s‰rskild organisationsplan.SjukvÂrdshuvudm‰nnen bˆr dessutom tydligt redovisa vilka resurser i formav pengar och personal som gÂr till habilitering/rehabilitering fˆr barn ochungdomar med funktionshinder.Enligt h‰lso- och sjukvÂrdslagen skall individuella habiliterings- och re-habiliteringsplaner erbjudas barn/ungdomar med funktionshinder och derasfamiljer. Det utvecklingsarbete som pÂgÂr n‰r det g‰ller individuell planenligt h‰lso- och sjukvÂrdslagen behˆver lyftas fram och fˆrst‰rkas.Kvalitetsarbetet bˆr ges en mera framtr‰dande st‰llning inom verksam-heter med ansvar fˆr habilitering/rehabilitering och hj‰lpmedel och huvud-m‰nnen bˆr stˆdja forskning och statistikinsamling inom omrÂdet.SjukvÂrdshuvudm‰nnen bˆr ocks verka fˆr att viktiga begrepp inom ha-bilitering och rehabilitering fˆrankras inom verksamheterna
Tillgängligheten i det politiska livet i kommuner och landsting. Myndigheten för handikapppolitisk samordning
Handisam
(2007)
Tillhörighet och avståndstagande. Segregationsideologi och föräldraintegrering
Åkerström, Malin
(1999)
Tillit som bot. Placebo i tid och rum
Sachs, Lisbet
(2004)
Tillit ger reaktioner i hjärnan som påverkar känslan och därmed kroppen. Sådan förväntan och tillit har inte blivit medicinskt utforskad. Det har blivit allt svårare att avfärda skildringar av läkande ritualer och magi från andra länder som enbart anekdoter.
Boken vänder sig till medicin- och antropologistuderande och studenter inom vård och omsorg samt alla de som i olika befattningar och roller är verksamma inom vården.
Tills döden skiljer oss åt – om att vara äldre omsorgsgivare
Takter, M.
(2015)
"Att vara anhörig är att få höra an till någon, att vara närstående är
att få stå någon nära. Anhörigskap är för de flesta inte att vara en
resurs, en funktion eller en kategori. Anhörigskap är relation, en
relation till en annan människa som man vill ha i sin närhet och vara
nära." Så börjar inledningen till antologin om det obetalda
omsorgsarbetet.
Tillsammans men var för sig. Om särboenderelationer mellan äldre kvinnor och män i Sverige
Ghazanfareeon Karlsson S.
(2006)
Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst – lägesrapport
Socialstyrelsen
(2014)
Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning
Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst – lägesrapport
Socialstyrelsen
(2014)
Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning
Time does not heal all wounds. Mortality following the death of a parent
Rostila M, & Saarela J.
(2011)
Time does not heal all wounds. Mortality following the death of a parent
Rostila, M., & Saarela, J.
(2011)
Time spent on informal and formal care giving for persons with dementia in Sweden.
Wimo, A., von Strauss, E., Nordberg, G., Sassi, F., & Johansson, L
(2002)
Time Taken As A Caring Family
Steiger-Tebb, S.
(2008)
Timeline followback user´s guide: A calendar method for assessing alcohol and drug use
Sobell LC, Sobell MB.
(1996)
Timjan, en konsultationsmodell där barn med diagnos inom autismspektrat, får hjälp att samspela bättre med sina föräldrar
Hedvall, Åsa & Tornmalm, Marjana
(2000)
Tina och mormor
Ann-Kristin Lundmark
(2015)
Vid sorg och död är den första reaktionen, för många, att skydda sitt barn genom att inte tala om det.Författaren Ann-Kristin Lundmark vill med sin tredje bok i serien om 10-åriga Tina, Tina och mormor, öppna upp för samtal inom ämnet. Sorg kan inte undvikas och ett barn kan inte alltid skyddas, men genom att prata om det som en vägledning kan många frågor besvaras och bidra till en enklare sorgbearbetning.
Tina har en intensiv vår med kompisar, skola och fotbollsträning och hinner inte träffa sin mormor så mycket som vanligt. Tina får lite dåligt samvete. En kväll vaknar hon och behöver gå på toa, men när hon ska gå och lägga sig igen hör hon prat från köket. Tina får veta att mormor är sjuk i cancer och snart ska dö. Efteråt är ingenting riktigt som förut och hela Tinas tillvaro rasar samman!
Titanium : En liten bok om stora hjältar i deras kamp mot cancer
Hedberg Maria
(2017)
Väldigt berörande! Ett barn, hans bror, en familj drabbad av cancer så nära beskrivet att det kryper under skinnet på läsaren. Hur jobbigt och oroligt det faktiskt är både i stort och smått i den situation familjen levt med under alla dessa år. Författaren speglar även väldigt väl hur viktigt det är med förtroende och bemötande inom vården. En bok av detta slag bör varje vårdarbetare läsa och lägga de insikter den ger i bakhuvudet för att bättre kunna förstå helhetssituationen för patienten och familjen.Nils Erik Svedlund, barnläkareMaria tar oss med i många års kamp med ett cancersjukt barn och deras vardag. Vi kommer nära förtvivlan, smärta och tristess men också hopp, glädje och en stark syskonrelation. En viktig bok, även för personal och vårdutbildningar!Angelica Lindberg, kuratorSå glad att denna ärliga och viktiga bok finns! Berättelsen gav mig en insikt och förståelse för hur livet kan te sig i en familj med ett cancersjukt barn! När jag läste Titanium var det som om jag själv fanns med i familjens vardag och närhet. Så levande, så äkta, både kärleksfullt och skrämmande. Vilken styrka, vilket tålamod, vilken förmåga att ta vara på det minsta lilla positiva trots det ofattbara som händer under cancerbehandlingen. En mycket varm, närvarande och viktig berättelse om en lång, återkommande kamp mot leukemi i unga år och de konsekvenser det får för alla i familjen. Men också vikten av att tänka på syskonen, att låta dem finnas med och få plats i den vardag som blivit. Titanium är en bok jag varmt vill rekommendera, särskilt till de som arbetar inom vård och skola.Anneli Träff, grundskollärare
To be a good food provider: an exploratory study among spouses of persons with Alzheimer's disease
Fjellström, C., Starkenberg, A., Wesslen, A., Bäckström, A. T., & Faxén-Irving, G.
(2010)
To be a good food provider: an exploratory study among spouses of persons with Alzheimer's disease
Fjellström, C., Starkenberg, A., Wesslen, A., Bäckström, A. T., & Faxén-Irving, G.
(2010)
Large proportions of people with dementia live at home and need help from a relative. The aim of the current study was to examine how people living with persons with Alzheimer's disease (AD) perceived everyday life aspects of food choices, cooking, and food-related work. The analyses are based on focus group interviews including women and men acting as caregivers to people with AD and living in Sweden. The main results identified from the data, were how cohabitants to persons with AD struggle with either taking on a new role as a food provider or extending it, but also how they tried to cope as carer, which entailed food being an important part of the treatment of the disease. Those expressing greatest concern were those perceiving themselves as inexperienced food providers and carers, which in this study were all men.
To maintain control: negotiations in the everyday life of older people who can no longer manage on their own
Dunér, A.
(2007)
The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.
To maintain control: negotiations in the everyday life of older people who can no longer manage on their own
Dunér, A.
(2007)
The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.
To manage a complex depency: The experience of caregiver after a fall
De la Questa Benjomea C, Ramis Ortega E, Arredondo Gonzalez CP
(2019)
Abstract
Aim: To understand the experience of family members of an older relative who has had a fall which required medical attention.
Background: There is abundant bibliography in caregiving, but little is known about the problems faced by caregivers and how family members cope when their older relative has a fall.
Design: Qualitative study that used a symbolic interactionism perspective.
Methods: Twenty-two people with older relatives, who had had a fall and contacted health services in Spain, participated in the study. Data were obtained via written accounts, focus groups, and semi-structured interviews between February 2014 - December 2015. Analysis was guided by grounded theory procedures.
Results: With the fall, dependency becomes a complex issue for the family. To manage a complex dependency is the core issue that emerges from the data analysis. It depicts family efforts to assist their relative in gaining autonomy after a fall, in the best conditions they can provide. They do this with little guidance and support from healthcare professionals.
Conclusions: Guides and protocols for the care of a fragile older person, particularly after a fall, should not only include care but also support to caregivers. Health professionals and especially nurses need to be aware and respond to the family caregivers needs after a fall. To the fall prevention initiatives already in place, it must be added that those who support family members to cope with the care of an older person who has had a fall.
To pay or not to pay: examining underlying principles in the debate on financial support for family caregivers
Keefe, J. & Rajnovich, B.
(2007)
To pay or not to pay: examining underlying principles in the debate on financial support for family caregivers
Keefe J, Rajnovich B.
(2007)
In many countries one approach to supporting family-and-friend caregivers is direct financial or monetary support. Debates about the benefits and consequences of such policies pervade the literature. Building on the premise that values underlie public policy, the paper examines four policy paradoxes in the literature and uses selected examples from an international policy analysis to illustrate the underlying objectives and values upon which many of the policies were developed. These include the responsibility to care, economic or social objectives, gender equity, and the autonomy of care receivers. The authors conclude that policy makers need to be cautious about the unintended effects of financial support policy and develop a menu of policies and services to support caregivers. Future policy development in Canada must enable legitimate choice across the life course and ensure that neither the caregiver nor the care receiver will experience short- or long-term financial consequences of his or her choice.
To use or not to use: A literature review of factors that influence family caregivers' use of support services
Mast, M. E.
(2013)
Many family caregivers of frail older adults postpone or decline accessible and affordable services such as respite, despite their acknowledgement of unmet needs for support and time away from the burdens and stress of caregiving. How caregivers perceive their need for services, and the factors that influence their decisions to use or not use services, remain poorly understood. This article reviews the literature on family caregiving and the complex interrelated factors that influence caregivers' choices regarding support services. It organizes these factors into four areas: (a) service characteristics, (b) personal predisposing factors that affect perceived need, (c) experiential coping and decisionmaking patterns, and (d) relational factors. It also examines the implications of this evidence for nursing assessments and interventions with frail older adults and their family caregivers..
Tokfursten
Jonsson, Elgard
(1986)
Tourette syndrome in children and adolescents: Special considerations
Eapen, V. and R. Črnčec
(2009)
Tourette syndrome (TS) affects people of all ages, with onset in early childhood and continuing through the different stages of the life cycle into adolescence and adults. This review focuses on barriers to diagnosis and challenges in the management of young patients with TS. Barriers to identification occur at multiple levels, including detection in the community setting (including schools), parents' help-seeking behavior, and cultural influences on such behavior, as well as diagnosis by the medical provider. Challenges to management include unfamiliarity of primary care providers, inconsistencies in the diagnosis and management plan, and failure to recognize comorbid conditions, as well as inadequate knowledge and lack of resources to effectively deal with comorbidities. In addition to the complexities posed by pharmacological interactions, there are unique psychosocial challenges experienced by young people with TS and their families. Effective communication and collaboration between families, health care providers, and school personnel, as well as supportive communities, are essential components of comprehensive management. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Toward a comprehensive developmental model for major depression in men
Kendler, K.S, Gardner, C.O. & Prescott, C.A.
(2006)
Abstract
OBJECTIVE:
The multiple risk factors for major depression are interrelated through poorly understood developmental pathways. In 2002, the authors presented a developmental model for major depression in women. Based on similar methods, they here present an analogous model for men.
METHOD:
Using data from 2,935 adult male twins, interviewed twice over a 2-4-year period, the authors constructed, by means of structural equation modeling, an integrated etiologic model for major depression that predicts depressive episodes over 1 year from 18 risk factors conceptualized as five developmental "tiers" reflecting childhood, early adolescence, late adolescence, adulthood, and the last year.
RESULTS:
The best-fitting model, including six correlations and 76 paths, provided a good fit to the data, explaining 49% of the variance in the liability to depressive episodes. The overall results, similar to those seen in women, suggest that the development of major depression results from the action and interaction of three broad pathways of internalizing symptoms, externalizing symptoms, and adversity. Childhood parental loss and low self-esteem were more potent variables in the model in men than in women. Genetic risks for major depression had a broader spectrum of action in men than in women. The pathway to major depression through externalizing symptoms was not more prominent in men than in women.
CONCLUSIONS:
Major depression in men, as in women, is an etiologically complex disorder influenced by risk factors from multiple domains that act in developmental time. The similarities in etiologic pathways to major depression for men and women outweigh the modest differences.
Toward a Definition of Mixed Methods Research
Johnson, R.B., Onwuegbuzie, AJ., & Turner, L.
(2007)
The purpose of this article is to examine how the field of mixed methods currently is being defined. The authors asked many of the current leaders in mixed methods research how they define mixed methods research. The authors provide the leaders' definitions and discuss the content found as they searched for the criteria of demarcation. The authors provide a current answer to the question, What is mixed methods research? They also briefly summarize the recent history of mixed methods and list several issues that need additional work as the field continues to advance. They argue that mixed methods research is one of the three major "research paradigms" (quantitative research, qualitative research, and mixed methods research). The authors hope this article will contribute to the ongoing dialogue about how mixed methods research is defined and conceptualized by its practitioners.
Towards common principles of flexicurity: More and better jobs through flexibility and security
European Commission
(2007)
The Commission presents a set of guidelines as a framework for the Member States' flexicurity strategies.
The principles of flexicurity contribute to the modernisation of the European social models.
Concept of flexicurity
To be effective, labour market modernisation strategies must take into account the needs of employees and employers alike. The concept of flexicurity is therefore a global approach which favours:
•flexibility of employees, who must be able to adapt to labour market developments and achieve their professional transitions. Similarly, this approach must improve the flexibility of enterprises and work organisation in order to meet the needs of employers and to improve the balance between work and family life;
•security for employees, who must be able to progress in their professional careers, develop their skills and be supported by social security systems when they are not working.
Flexicurity strategies aim to reduce unemployment and poverty rates in the European Union (EU). In particular, they help to facilitate the integration of the most underprivileged groups on the labour market (such as the young, women, older workers and the long-term unemployed).
Towards Developing New Partnerships in Public Services: Users as Consumers, Citizens and/or Co-Producers in Health and Social Care in England and Sweden
Fotaki, M.
(2011)
The causes and effects of marketization of public services have been analysed extensively in the literature, but there is relatively little research on how those policies impact on the development of new forms of governance, and the role of users in these new arrangements. This study reviews examples of competition, freedom of choice and personalized care in health and social services in England and Sweden, in order to examine the type of relationships emerging between the user/consumer vis-à-vis market driven providers and various agencies of the state under the marketized welfare. The article focuses on the possible roles users might assume in new hybrid arrangements between markets, collaborations and steering. A user typology: namely, that of a consumer, citizen, co-producer and responsibilized agent in various governance arrangements, is then suggested. The article concludes by arguing that pro-market policies instead of meeting the alleged needs of post-modern users for individualized public services are likely to promote a new type of highly volatile and fragile partnerships, and create a new subordinated user who has no choice but to 'choose' services they have little control over.
The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper
Hanna Allemann, Frida Andréasson, Elizabeth Hanson, , Lennart Magnusson, Tiny Jaarsma, Ingela Thylén, Anna Strömberg
(2023)
Abstract
Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure.
Design: A co- design process built on core concepts and ideas embedded in co-design methodology.
Data sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and ap-proval of the final version of the support programme.
Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.
Conclusion: Co- design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.
Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. car-ers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning oppor-tunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme
Early parental death and its association with children’s mental and economic well-being in adulthood: a nationwide population-based register study
Petri Böckerman, Mika Haapanen, Christopher Jepsen
(2023)
Background This study examined the association between early parental death and children’s subsequent mental health, years of schooling, and labour-market outcomes (ie, employment and earnings) in adulthood. Methods We used nationwide register-based data for Finnish citizens born between 1971 and 1986 (n=962 350). Logistic and linear regression models were used to examine the association of early parental death before the age of 21 years with subsequent mental health and labour-market outcomes in adulthood at ages 26–30. The estimated models accounted for an extensive set of demographic and parental characteristics based on longitudinal register data. Results Early-life parental death was found to be consistently associated with a higher risk of hospitalisation due to mental health disorders, higher use of mental health-related medications, and absence from work due to illness in adulthood. The associations were negative regardless of the gender of the child or parent, but the estimated odds ratios were usually quantitatively larger for males than females. When examining the type of outcome, we observed the largest quantitative effects were observed using substance-use disorders and intentional self-harm as outcomes. Moreover, we documented considerable reductions in years of schooling, employment, and earnings in adulthood. Conclusions Parental death before the age of 21 was significantly associated with an increased risk of being diagnosed with a mental disorder and lower level of economic well-being measured by labour-market success in adulthood.
Depression among Parents Two to Six Years Following the Loss of a Child by Suicide: A Novel Prediction Model
Nyberg Tommy, Hed Myrberg Ida, Omerov Pernilla, Steineck Gunnar, Nyberg Ullakarin, Simeoni Umberto
(2016)
Parents who lose a child by suicide have elevated risks of depression. No clinical prediction tools exist to identify which suicide-bereaved parents will be particularly vulnerable; we aimed to create a prediction model for long-term depression for this purpose. During 2009 and 2010 we collected data using a nationwide study-specific questionnaire among parents in Sweden who had lost a child aged 15-30 by suicide in years 2004-2007. Current depression was assessed with the Patient Health Questionnaire (PHQ-9) and a single question on antidepressant use. We considered 26 potential predictors assumed clinically assessable at the time of loss, including socio-economics, relationship status, history of psychological stress and morbidity, and suicide-related circumstances. We developed a novel prediction model using logistic regression with all subsets selection and stratified cross-validation. The model was assessed for classification performance and calibration, overall and stratified by time since loss. In total 666/915 (73%) participated. The model showed acceptable classification performance (adjusted area under the curve [AUC] = 0.720, 95% confidence interval [CI] 0.673-0.766), but performed classification best for those at shortest time since loss. Agreement between model-predicted and observed risks was fair, but with a tendency for underestimation and overestimation for individuals with shortest and longest time since loss, respectively. The identified predictors include female sex (odds ratio [OR] = 1.84); sick-leave (OR = 2.81) or unemployment (OR = 1.64); psychological premorbidity debuting during the last 10 years, before loss (OR = 3.64), or more than 10 years ago (OR = 4.96); suicide in biological relatives (OR = 1.54); with non-legal guardianship during the child's upbringing (OR = 0.48); and non-biological parenthood (OR = 0.22) found as protective. Our prediction model shows promising internal validity, but should be externally validated before application. Psychological premorbidity seems to be a prominent predictor of long-term depression among suicide-bereaved parents, and thus important for healthcare providers to assess.
Don´t set us aside! Experiences of families of people with BPD who have access to Brief admission: a phenomenological perspective
Hultsjö Sally ; Appelfeldt Åsa ; Wärdig Rikard ; Cederqvist Jessica
(2023)
Will your child take care of you in your old age? Unequal caregiving received by older parents from adult children in Sweden
von Saenger Isabelle, Dahlberg Lena, Augustsson Erika, Fritzell Johan, Lennartsson Carin
(2023)
Abstract
Intergenerational family care provided to older parents by adult children is growing and differs based on gender and socioeconomic status. Few studies consider these elements in relation to both the parent and their adult child, and little is known about the number of care tasks received even though those providing intensive levels of care are at risk of experiencing adverse consequences in their lives. This study uses data from the nationally representative 2011 Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD) and includes child-specific information from parents aged 76 years and above. Analyses used ordinal logistic regression and are presented as average marginal effects and predictive margins. Results show that parents in need of care report that one-third of all adult children in the sample provide care to three out of five of them. The care is most often non-intensive, yet nearly one in ten of all children provide more intensive care of two or more tasks. When adjusting for dyad characteristics as well as geographic proximity, results show adult–child gender differences where parents receive more care from manual-working-class daughters than manual-working-class sons. Overall, manual-working-class daughters are most commonly reported as carers among adult children, and they are particularly overrepresented in providing intensive care. We conclude that gender and socioeconomic inequalities exist among care receivers’ adult children, even in a strong welfare state such as Sweden. Knowledge about levels and patterns of intergenerational care have important implications for how to reduce unequal caregiving.
Effectiveness of interventions designed to mitigate the negative health outcomes of informal caregiving to older adults: an umbrella review of systematic reviews and meta-analyses
Kirvalidze Mariam, Abbadi Ahmad, Dahlberg Lena, Sacco Lawrence B, Morin Lucas, Calderón-Larrañaga Amaia
(2023)
ObjectivesThis umbrella review aimed to evaluate whether certain interventions can mitigate the negative health consequences of caregiving, which interventions are more effective than others depending on the circumstances, and how these interventions are experienced by caregivers themselves.DesignAn umbrella review of systematic reviews was conducted.Data sourcesQuantitative (with or without meta-analyses), qualitative and mixed-methods systematic reviews were included.Eligibility criteriaReviews were considered eligible if they met the following criteria: included primary studies targeting informal (ie, unpaid) caregivers of older people or persons presenting with ageing-related diseases; focused on support interventions and assessed their effectiveness (quantitative reviews) or their implementation and/or lived experience of the target population (qualitative reviews); included physical or mental health-related outcomes of informal caregivers.Data extraction and synthesisA total of 47 reviews were included, covering 619 distinct primary studies. Each potentially eligible review underwent critical appraisal and citation overlap assessment. Data were extracted independently by two reviewers and cross-checked. Quantitative review results were synthesised narratively and presented in tabular format, while qualitative findings were compiled using the mega-aggregation framework synthesis method.ResultsThe evidence regarding the effectiveness of interventions on physical and mental health outcomes was inconclusive. Quantitative reviews were highly discordant, whereas qualitative reviews only reported practical, emotional and relational benefits. Multicomponent and person-centred interventions seemed to yield highest effectiveness and acceptability. Heterogeneity among caregivers, care receivers and care contexts was often overlooked. Important issues related to the low quality of evidence and futile overproduction of similar reviews were identified.ConclusionsLack of robust evidence calls for better intervention research and evaluation practices. It may be warranted to avoid one-size-fits-all approaches to intervention design. Primary care and other existing resources should be leveraged to support interventions, possibly with increasing contributions from the non-profit sector
Combining informal care with paid work: An exploration of working carers’ situation with regards to their health status, gendered patterns of care, support and the impact of the COVID-19 pandemic
Vicente Joana
(2023)
Abstract [en]
Working carers (WKCs) combine paid work with informal care. Little is known about this important group of carers, which is expected to increase in number due topopulation ageing and economic trends. WKCs are beneficial for society but thecombination of work and care roles has consequences for their social and financialcircumstances as well as their health. This thesis explores the caregiving situation ofWKCs.
Study I was a scoping review of research on the challenges of and solutions for thecombination of paid work and care and the role of technologies in supportingWKCs. Results included a conceptual framework which identified high and/orcompeting demands as a key challenge solved by formal support. Web-based andcommunication technologies were seen to be a potential beneficial solution tosupport WKCs. Nevertheless, barriers existed in some instances, preventing theiroptimal use.
Studies II and III were based on data from a 2018 survey of a stratified randomsample of the Swedish population. Study II described informal care provision andreceived support among Swedish female and male WKCs. Female compared tomale WKCs cared more often alone, with more intensity, experienced care as moredemanding while their ability to work was reduced to a greater extent. Study III determined the caregiving-related factors associated with WKCs’ reducedability to work and experience of caregiving as demanding. A key finding was thatpsychological stress and financial problems due to caregiving increased the odds ofboth experiencing caregiving as demanding and a reduced ability to work, whilefinding caregiving satisfying decreased the odds of both.
Study IV was an interview study of WKCs’ experiences during the COVID-19pandemic. WKCs’ positive experiences included the delivery of support by distancevia digital technologies and more time with the care-recipient. Negative experiencesincluded the fear of becoming sick, new challenges at work, and the cancellation ofhome and community-based services for the care recipient.
This thesis contributes new knowledge on the situation of WKCs in Sweden. Itsfindings have implications for how policy can more appropriately and effectivelyaddress WKCs’ needs and preferences for support and their combination of workand care roles.
Ethical Considerations When Conducting Pan-European Research with and for Adolescent Young Carers
Hanson, E., Lewis, F., Barbabella, F., Hoefman, R., Casu, G..... Svensson, M., Becker, S., Magnusson, L
(2023)
Abstract [en]
Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects.
Transitions in Caregiving: Evaluating a Person-Centered Approach to Supporting Family Caregivers in the Community
Sundar, V., Fox, S. W., & Phillips, K. G.
(2014)
Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.
Transitions in men's caring identities: experiences from home-based care to nursing home placement.(Report).
Eriksson, H. and J. Sandberg
(2008)
To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1748-3743.2007.00092.x Byline: Henrik Eriksson, Jonas Sandberg Keywords: caring; gender; informal care; nursing home Abstract: Objectives. The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home. Background. Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective. Design. A qualitative constructivist approach was adopted for this study. Participants. Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home. Methods. Interviews were analysed with a constructivist approach. Results. The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship. Conclusions. The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men's caring activities and to make them sustainable, we believe that men in an informal caring relationship need support. Relevance to clinical practice. Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men's lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers. Article History: Submitted for publication: 21 November 2006 Accepted for publication: 25 June 2007 Article note: Henrik Eriksson, Department of Caring and Public Health Sciences, Malardalen University, Box 325, 631 05, Eskilstuna, Sweden, Telephone: +46 16 153747, E-mail: henrik.eriksson@mdh.se
Transitions into informal caregiving and out of paid employment of women in their 50s
Berecki-Gisolf J, Lucke J, Hockey R, Dobson A.
(2008)
Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving
Transitions into informal caregiving and out of paid employment of women in their 50s
Berecki-Gisolf J, Lucke J, Hockey R, Dobson A.
(2008)
Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving
Translation of a Dementia Caregiver Intervention for Delivery in Homecare as a Reimbursable Medicare Service: Outcomes and Lessons Learned
Gitlin, L. N., Jacobs, M., & Earland, T. V.
(2010)
Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons With Dementia
Teri L, McKenzie G, Logsdon RG, McCurry SM, Bollin S, Mead J, et al.
(2012)
The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of evidence regarding the potential for psychosocial interventions to enhance care and decrease costs. To address this need, the Administration on Aging has begun funding translation of evidence-based programs into community settings. Two programs, Reducing Disability in Alzheimer's Disease and STAR-Community Consultants (STAR-C), were selected by the Ohio Department of Aging (in collaboration with the Alzheimer's Association Chapters in Ohio) and the Oregon Department of Health Services (in partnership with Area Agencies on Aging and the Oregon Chapter of the Alzheimer's Association) to be implemented by their staff. Both programs are designed to improve care, enhance life quality, and reduce behavioral problems of persons with dementia and have demonstrated efficacy via randomized controlled trials. This article addresses the developmental and ongoing challenges encountered in the translation of these programs to inform other community-based organizations considering the translation of evidence-based programs and to assist researchers in making their work more germane to their community colleagues.
Translucency and Complexity: Effects on Blissymbol Learning Using Computer and Teacher Presentations
Hetzroni, O. E.
(2002)
Purpose: A single-subject alternating treatment design was used to (a) evaluate the influence of translucency (i.e., the guessability of the symbol when the referent is known) and complexity (i.e., the number of lines or strokes that compose the symbol) on Blissymbol acquisition and (b) compare the effectiveness of computer-based instruction (CBI) and traditional teacher-based instruction (TBI) on students' accuracy in identifying Blissymbols.
Method: Three students with communication disorders were taught to identify 40 Blissymbols using the two instructional formats.
Results: Findings revealed that high translucency Blissymbols were learned significantly faster than low translucency Blissymbols for all participants. High complexity assisted learning when translucency was high, but hindered learning when translucency was low. These results were evident in both interventions.
Translucency and learnability of Blissymbols in Setswana-speaking children: an exploration
Bornman, J., Alant, E., & Du Preez, A.
(2009)
Although the importance of iconicity in the learning of symbols has been widely acknowledged, there have been few systematic investigations into the influence of culture on the ratings of symbol iconicity. The purposes of this study were two-fold: to determine (a) the translucency ratings of specific Blissymbols as rated by 6- to 7-year-old Setswana-speaking children (one of South Africa's 11 official languages); and (b) whether the ratings changed after second and third exposures in order to determine the learnability of these symbols. This study is partially based on the study by Quist et al. (1998), which utilized Dutch and American participants. Thirty-four Setswana children were exposed to 93 selected Blissymbols. A 3-point semantic differential scale consisting of three faces accompanied each Blissymbol, without the written gloss. This procedure was repeated over a period of 3 days. The results indicated that the majority of Blissymbols were rated as having high translucency ratings. The research further demonstrated significant differences in translucency between first and second exposures, suggesting that learning of the symbols had occurred. The comparison between the results of the current study and the results reported in the Quist et al. study reveal that the translucency ratings of the majority of the selected Blissymbols ranged from moderate to high for all three studies, but that the distribution of symbols across the ratings appears to be different.
Transmission of Holocaust Trauma-An Integrative View
Kellerman, N. P. F.
(2001)
Much has been written about how children of Holocaust survivors tend to absorb the psychological burdens of their parents. But questions remain regarding such parental transmission of Holocaust trauma. What was in fact passed on from parent to child? How does the transmission occur? Do parents invariably transmit and are children equally susceptible? The purpose of this article is to discuss these issues and present a model in which the process of trauma transmission can be understood more consistently. After a brief description of that which was transmitted, four prevalent theories of trauma transmission are described, including the psychodynamic, sociocultural, family system, and biological points of view. Thereafter, some of the mitigating and aggravating factors are presented that are assumed to decrease or increase the risk of children to absorb the trauma of their parents and to develop specific second-generation psychopathology as a result. In conclusion, an integrative view is suggested that attempts to define the possible influence of biological predisposition, individual developmental history, family system and social situation on transgenerational influence of Holocaust trauma.
Trappan modellen för samtal med barn som upplevt våld i familjen – en utvärdering för metodutveckling
Källström Cater, Åsa
(2009)
Trauma and mental health of children in Gaza
Hein, F. A., Qouta, S., Thabet, A., & El Sarraj, E.
(1993)
Trauma, Exile and Mental Health in Young Refugees
Montgomery, E.
(2011)
OBJECTIVE:
To review evidence of trauma and exile-related mental health in young refugees from the Middle East.
METHOD:
A review of four empirical studies: i) a qualitative study of 11 children from torture surviving families, ii) a cohort study of 311 3-15-year-old asylum-seeking children, iii) a qualitative study of 14 members of torture surviving families and iv) a follow-up study of 131 11-23-year-old refugees.
RESULTS:
The reactions of the children were not necessarily post-traumatic stress disorder specific. Seventy-seven per cent suffered from anxiety, sleep disturbance and/or depressed mood at arrival. Sleep disturbance (prevalence 34%) was primarily predicted by a family history of violence. At follow-up, 25.9% suffered from clinically relevant psychological symptoms. Traumatic experiences before arrival and stressful events in exile predicted internalizing behaviour, witnessing violence and frequent school changes in exile predicted externalizing behaviour. School participation, Danish friends, language proficiency and mother's education predicted less long-term psychological problems.
CONCLUSION:
Psychological problems are frequent in refugee children, but the extents are reduced over time in exile. Traumatic experience before arrival is most important for the short-term reaction of the children while aspects of life in exile are important for the children's ability to recover from early traumatization.
Trauma-focused CBT for traumatic grief in military children
Cohen, J.A., & Mannarino, A.P.
(2011)
Traumatic grief inventory for children (TGIC).
Dyregrov, A., Yule, W., Smith, P., Perrin, S., Gjestad, R. & Prigerson, H.
(2001)
Traumatic grief inventory for children (TGIC).
Dyregrov, A., Yule, W., Smith, P., Perrin, S., Gjestad, R. & Prigerson, H.
(2001)
Traumatic loss in children and adolescents
Mannarino, A.P. & Cohen, J.A.
(2011)
Although different types of childhood trauma have many common characteristics and mental health outcomes, traumatic loss in children and adolescents has a number of distinctive features. Most importantly, youth who experience a traumatic loss may develop childhood traumatic grief (CTG), which is the encroachment of trauma symptoms on the grieving process and prevents the child from negotiating the typical steps associated with normal bereavement. This article discusses the distinctive features of CTG, how it is different from normal bereavement, how this condition is assessed, and promising treatments for children who experience a traumatic loss.
Traveller information in support of the mobility of older people and people with disabilities : user and provider perspectives
Waara, N.
(2013)
Traveller information designed to fulfil needs and expectations of individual travellers is a key factor in improving access for older people and people with disabilities to public transport. The overall aim of this thesis is to contribute to the knowledge of user and provider perspectives on the provision of traveller information for older people and people with disabilities in public transport with a focus on use and provision of such traveller information through online traveller information services. The research work is based on perceptions of older people and people with disabilities, together with experts' views on the implementation process. Both qualitative methods (interviews, focus group interviews, group discussions, workshops) and quantitative methods (questionnaires) were used. The substantial influence on the travel of older people and people with disabilities of use of online traveller information services is the empowerment of those of the older travellers and travellers with disabilities that are anxious and insecure before a journey. Through better access of traveller information offered by online traveller information services these travellers can find what they need to build their confidence before a journey and subsequently be supported in their roles as travellers. That is, when they do travel in public transport they want to be able to do so safely and with confidence; they do not necessarily want to increase the number of journeys they undertake. Thus, theoretically the concept of motility has higher relevance for this particular group of travellers than the concept of mobility. The exploration of the traveller information content shows that even though the need to plan and prepare for a journey seems to be equally important for the whole group of older people and people with disabilities as it is for subgroups based on functional limitations, the importance and the intended use of the traveller information differ between groups as the focus shifts from comfort information on an aggregated level to an increasing importance of accessibility information for subgroups. Both the comfort information and the absolute information enable assessment of the effort required to carry through a journey. This is decisive for the choice to travel, but the traveller information focused on comfort relates more to the individual choice to travel while absolute traveller information enables the traveller to assess whether travel is possible at all. Finally, to be accessed the traveller information needed by older people and people with disabilities need to be implemented. The inertia of the implementation process was explored through conflicts of interest that can help forward barriers in the implementation process. The findings point to there being a verbal problem in policies, legislation and guidelines that leave room for interpretation of the necessity of implementation of measures like traveller information needed by older people and people with disabilities. Finally this thesis carries implications for further research within all three areas that have been researched
Tre generationer utvecklingsstörda mödrar och deras familjenätverk
Traustadóttir, Rannveig & Sigurjónsdóttir Björg Hanna
(2004)
Treating childhood traumatic grief: a pilot study
Cohen, J.A., Mannarino, A.P. & Knudsen, K.
(2004)
Abstract
OBJECTIVE:
To examine the potential efficacy and specific timing of treatment response of individual child and parent trauma-focused cognitive-behavioral therapy for childhood traumatic grief (CTG), a condition in which trauma symptoms impinge on the child's ability to successfully address the normal tasks of grieving.
METHOD:
Twenty-two children and their primary caretakers received a manual-based 16-week treatment with sequential trauma- and grief-focused interventions.
RESULTS:
Children experienced significant improvements in CTG, posttraumatic stress disorder (PTSD), depressive, anxiety, and behavioral problems, with PTSD symptoms improving only during the trauma-focused treatment components and CTG improving during both trauma- and grief-focused components. Participating parents also experienced significant improvement in PTSD and depressive symptoms.
CONCLUSIONS:
The timing of improvements in CTG and PTSD symptoms lends support to providing sequential trauma- and grief-focused interventions and to the concept that CTG is related to but distinct from PTSD. The results also suggest the benefit of individual treatment for CTG and for including parents in the treatment of CTG. Randomized, controlled trials are needed to further test the efficacy of this treatment model.
Treating paternal alcoholism with learning sobriety together: Effects on adolescents versus preadolescents
Kelley ML, Fals-Stewart W.
(2007)
The purpose of this study was to determine whether Learning Sobriety Together, a treatment for substance abuse that combines behavioral couples therapy and individual counseling, had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus preadolescent siblings living in homes with their alcoholic fathers (N = 131) and their non-substance-abusing mothers. During a 17-month assessment period, the association between parents' functioning (i.e., fathers' drinking as determined by percentage of days abstinent and parents' dyadic adjustment) and children's adjustment (as rated by mothers, fathers, and children's teachers) was stronger for preadolescents than for their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drinking and improve couple functioning may serve as an important preventative intervention for preadolescents in these homes, whereas adolescents may need more intensive interventions to address internalizing and externalizing symptoms.
Treating paternal drug abuse using Learning Sobriety Together: Effects on adolescents versus children
Kelley ML, Fals-Stewart W.
(2008)
The focus of this study was whether couples-based treatment for substance abuse had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus child siblings living in their homes. Couples took part in a couples-based treatment for substance abuse that combines Behavioral Couples Therapy and individual counseling (i.e., Learning Sobriety Together). During a 17-month assessment period, the relationship between parents' functioning (i.e., fathers' drug use as determined by percent days abstinent and parents' dyadic adjustment) as rated by mothers, fathers, and children's teachers and internalizing behavior (as rated by mothers' only) was stronger for children than their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drug use and improve couple functioning may reduce internalizing and externalizing symptoms for children in their homes; however, adolescents may need more intensive interventions to address internalizing and externalizing symptoms.
Keywords: Children of drug abusers, Couples therapy
Treating trauma and traumatic grief in children and adolescents
Cohen, J. A., Mannarino, A. P., & Deblinger, E.
(2006)
This is the authoritative guide to conducting trauma-focused cognitive-behavioral therapy (TF-CBT), a systematic, evidence-based treatment for traumatized children and their families. Provided is a comprehensive framework for assessing posttraumatic stress disorder, depression, anxiety, and other symptoms; developing a flexible, individualized treatment plan; and working collaboratively with children and parents to build core skills in such areas as affect regulation and safety. Specific guidance is offered for responding to different types of traumatic events, with an entire section devoted to grief-focused components. Useful appendices feature resources, reproducible handouts, and information on obtaining additional training. TF-CBT has been nationally recognized as an exemplary evidence-based program.
Treatment Dropout and Missed Appointments Among Adults With Attention-Deficit/Hyperactivity Disorder
Soendergaard, H. M., Thomsen, P. H., Pedersen, P., Pedersen, E., Poulsen, A. E., Nielsen, J. M., … Soegaard, H. J.
(2016)
OBJECTIVE:
Knowledge of factors associated with treatment dropout and missed appointments in adults with attention-deficit/hyperactivity disorder (ADHD) is very limited. On the basis of proposed hypotheses that past behavior patterns are more predictive of current behaviors of treatment dropout and missed appointments than are sociodemographic and clinical characteristics, we examined the associations of sociodemographic variables, clinical variables, risk-taking behavior, educational and occupational instability, and behaviors during mandatory schooling with the primary outcome measures of treatment dropout and missed appointments.
METHOD:
In a naturalistic cohort study of 151 adult outpatients with ADHD initiating assessment in a Danish ADHD unit from September 1, 2010, to September 1, 2011, the Adult ADHD Self-Report Scale v1.1 symptom checklist (ASRS) and a thorough clinical interview were used to assess ADHD according to DSM-IV-TR criteria. Stepwise logistic regression analysis was used to estimate reported associations.
RESULTS:
A total of 27% of patients dropped out of treatment and a total of 42% had ≥ 3 missed appointments during treatment. Mood and anxiety disorders significantly lowered the odds of treatment dropout (odds ratio [OR] = 0.18; 95% confidence interval [CI], 0.05-0.65), whereas having started but not completed 2 or more educational programs apart from mandatory schooling significantly increased the odds of dropout (OR = 3.01; 95% CI, 1.32-6.89). Variables significantly associated with most missed appointments were low educational level (OR = 2.19; 95% CI, 1.12-4.31), 3 or more employments of less than 3 months' duration (OR = 2.86; 95% CI, 1.30-6.28), and having skipped class often/very often during mandatory schooling (OR = 2.65; 95% CI, 1.29-5.43). Additionally, the predominantly inattentive ADHD (ADHD-I) subtype lowered the odds of missed appointments (OR = 0.17; 95% CI, 0.05-0.62).
CONCLUSION:
Our results suggest that past behavior in terms of highest dropout rates in the educational and occupational systems and highest rates of skipping class during mandatory schooling is equally associated with current behavior of treatment dropout and missed appointments as are sociodemographic and clinical factors.
Treatment of Cerebral Palsy and Motor Delay
Lewitt, Sophie
(2003)
Treatment of late-life depression alleviates caregiver burden
Martire, L. M., Schulz, R., Reynolds, C. F., III, Karp, J. F., Gildengers, A. G., & Whyte, E. M.
(2010)
Treatment of late-life depression alleviates caregiver burden
Martire, L. M., Schulz, R., Reynolds, C. F., III, Karp, J. F., Gildengers, A. G., & Whyte, E. M.
(2010)
Treatment of Late-Life Depression Alleviates Caregiver Burden
Martire, L. M., Schulz, R., Reynolds, C. F., Karp, J. F., Gildengers, A. G., & Whyte, E. M.
(2010)
OBJECTIVES: To describe the burden experienced by family caregivers of older adults with depression and to examine the positive effects on caregivers of treating late-life depression.
DESIGN: Two-phase treatment study for major depressive disorder (MDD) that included 6 weeks of open treatment with antidepressant medication for all older patients followed by 16 weeks of randomized treatment for patients who were partial responders, comparing a combination of medication and interpersonal psychotherapy with medication alone.
SETTING: Primary care and university late-life mental health research clinic.
PARTICIPANTS: Adults aged 60 and older participating in a randomized trial for treatment of MDD who enrolled in a family caregiver study and their caregiver (N=244 dyads).
MEASUREMENTS: Improvement in patient symptoms during open treatment (lower scores on the Hamilton Rating Scale for Depression (HRSD)) and remission of depression during randomized treatment (3 consecutive weekly HRSD scores of ≤7) were examined as predictors of lower general caregiver burden and burden specific to patient depression.
RESULTS: Caregivers reported a moderate to high level of general caregiver burden on average. Change in patient depression during open treatment was associated with significantly decreased depression-specific burden (β=−0.22, P=.001) and a trend toward lower general burden (β=−0.08, P=.08). Caregivers of patients who remitted showed significantly decreased depression-specific burden (F (1,76)=4.27, P=.04).
CONCLUSION: Treatment of late-life depression has benefits that extend to the family members on whom patients depend. Caregiver education and support may strengthen these effects.
Treatment of Parenting Behavior With a Psychostimulant – a Case-Study of an Adult With Attention-Deficit Hyperactivity Disorder
Evans, S. W., Vallano, G., & Pelham, W.
(1994)
Describes the case of a 28-yr-old woman whose 6-yr-old son was diagnosed with attention deficit hyperactivity disorder (ADHD). Behavioral parent training (BPT) was recommended for the mother, followed by medication for the child. However, during BPT the mother was also diagnosed with ADHD. The mother was evaluated using a double-blind procedure with placebo and methylphenidate. The ability of the mother to monitor and manage her son's behavior was assessed using a self-monitoring form and daily interviews. Methylphenidate improved the mother's ability to manage her son's behavior consistently and reduced the severity of her other ADHD symptoms, including fidgety and impulsive behavior. The mother's perceptions of her parenting skills also improved. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Treatment of post-traumatic stress disorder in children using cognitive behavioural writing therapy
Van der Oord, S., Lucassen, S., Van Emmerik, A. & Emmelkamp, P.
(2010)
Abstract
OBJECTIVES:
This study evaluated the effectiveness of Cognitive Behavioral Writing Therapy (CBWT) in 23 children (age 8-18 years) in the Netherlands, who experienced a range of single and recurrent traumatic experiences. CBWT uses exposure, cognitive restructuring and social sharing.
METHODS:
At pre-test, post-test and follow-up, post-traumatic stress disorder (PTSD) symptoms, depressive symptoms, trauma-related cognitions and general behavioural problems were assessed.
RESULTS:
At post-test there was a significant reduction of all symptoms, and this effect was maintained at 6 months follow-up. The mean amount of treatment sessions needed was 5.5.
CONCLUSIONS:
This study shows that short-term CBWT is a potentially effective intervention for clinically referred traumatized children. There is now a clear need of establishing the effectiveness of CBWT in a randomized, controlled trial.
PRACTICE IMPLICATION:
This first study indicates CBWT is a promising treatment, which can easily be used in clinical practice.
Treatment outcomes and mediators of parent management training: a one-year follow-up of children with conduct problems
Hagen KA, Ogden T, Bjørnebekk G.
(2011)
This effectiveness study presents the results of a 1-year follow-up of a randomized controlled trial of Parent Management Training. Families of 112 Norwegian girls and boys with clinic-level conduct problems participated, and 75 (67%) families were retained at follow-up. Children ranged in age from 4 to 12 at intake (M = 8.44). Families randomized to the control group received an active treatment alternative as would be normally offered by participating agencies. Multi-informant, multisetting outcome measures were collected and results from both intention-to-treat and treatment-on-the-treated analyses are presented. In two separate indirect effects models, assignment to Parent Management Training-the Oregon model predicted greater effective discipline and family cohesion at postassessment, which in turn predicted improvements in several child domains at follow-up.
Trygghetscirkeln för ett reflekterande föräldraskap: COS-P i Sverige – kunskapsspridning och prövning av ett psykoedukativt föräldraprogram
NEANDER, K. & RISHOLM MOTHANDER, P.
(2015)
Projektets avsåg att pröva ett anknytningsbaserat föräldrastödsprogram,
Trygghetscirkeln (COS-P), vars mål är att hjälpa föräldrar att nå fördjupad förståelse för
barns behov av känslomässigt stöd från sina föräldrar.
Prövningen av Trygghetscirkeln som komplement till övrig behandling genomfördes på
tre geografiskt spridda behandlingsenheter för familjer med små barn i Sverige. Efter
gruppledarutbildning genomfördes en RCT-studie där 52 föräldrar i åldern 18-44 år
(M=30 år) med barn under 58 månader (M=15 mån) randomiserades till att antingen få
behandling enligt planerad form (TAU), n=24 föräldrar, eller få behandling plus ett
tillskott av 8 ggr Trygghetscirkel i grupp (COS), n=28 föräldrar. Vid baslinjen (T1) fyllde
föräldrarna i självskattningsformulär avseende nivå av egen ångest (STAI), grad av
depressivitet (CES-D), grad av reflekterande förmåga (PRFQ) och nivå av föräldrastress
(SPSQ). Föräldrarna fyllde vidare i en anknytningsdagbok (AD). En diagnostisk DC:0-3R
profil sammanställdes utifrån journaldata, samspelet mellan förälder och barn
bedömdes kvalitativt (EAS) och en semistrukturerad djupintervju om förälderns inre
bild av sig själv och sitt barn (WMCI) värderades. Nya mätningar gjordes därefter vid sex
månader (T2) och 12 månader (T3) efter baslinjemätningen, med undantag för AD, den
diagnostiska profilen och djupintervjun som enbart gjordes vid T1 och T3. Efter
genomförda föräldragrupper utvärderades Trygghetscirkeln med hjälp av särskilda
frågeformulär riktade till föräldrar och till gruppledare. Som avslutning av projektet
gjordes öppna intervjuer dels med personal på respektive behandlingsenhet och dels
med ett bekvämlighetsurval av föräldrar.
Resultaten gav vid handen att både behandlare och föräldrar var mycket nöjda med
Trygghetscirkeln, som var stimulerande, gav en fördjupad kunskap och hjälpte
föräldrarna i sin föräldraroll. I COS-gruppen förändrades samspelskvalitet och framför
allt den inre bilden av föräldrarollen och av barnet signifikant mer än i TAU-gruppen. I
hela gruppen uppmättes över tid sänkt föräldrastress, reduktion av stressfaktorer i
omgivningen, bättre föräldra-barnrelation och mer åldersadekvat socioemotionell
utvecklingsnivå hos barnen. Den skattade nivån av egen psykiska hälsa, eller
självskattad reflekterande förmåga förbättrades emellertid inte i någon av grupperna.
Vid uppföljningen våren 2015 visade det sig att Trygghetscirkeln integrerats som en
väsentlig del i verksamheternas behandlingsutbud.
Rapporten lyfter fram att genomsnittsåldern för barnen i den undersökta gruppen var
låg, vilket ledde till en låg förekomst av individuella barnkliniska symtom. Problemen
var i huvudsak koncentrerade till föräldrafunktionen. Föräldrarna hade i allmänhet en
etablerad behandlingskontakt innan de bjöds in till studien vilket troligen medförde att
upplevelsen av den egna psykiska hälsa redan hade stabiliserats. Däremot förändrades
stress, samspelskvalitet och den inre bilden långsammare, vilket ledde till en mätbar
positiv förändring först vid uppföljningen efter 12 månader. Denna förändring var mer
tydlig hos COS-gruppen än hos TAU-gruppen.
7
Slutsatsen är att Trygghetscirkeln är ett föräldraprogram som uppskattas stort av både
föräldrar och gruppledare. Då Trygghetscirkeln syftar till ökad förståelse för hur det
egna förhållningssättet påverkar föräldrabeteendet, aktualiseras förälderns egna hinder
och svårigheter i mötet med materialet och gruppdiskussionerna. Detta stärker
betydelsen av erfarna gruppledare och att det sammanhang inom vilket
Trygghetscirkeln erbjuds får möjlighet att fungera som en trygg bas. Vi kan inte uttala
oss om Trygghetscirkeln som en generellt preventiv insats till alla föräldrar men vill
rekommendera den för riktade insatser till barn med identifierade risker för psykisk
ohälsa eller utvecklingsavvikelser samt som komplement till annan behandling där
större behov av barnkliniska insatser föreligger.
Trygghetslarm: Uppföljning av funktion och säkerhet
Socialstyrelsen
(2008)
Tröst – beskriven av långvarigt sjuka barn, föräldrar och en sjuksköterska
Ångström-Brännström, C.
(2010)
Akademisk avhandling.
Det övergripande syftet med avhandlingen är att beskriva långvarigt sjuka barns upplevelser av tröst samt vilka och vad som tröstar barn, föräldrar och en sjuksköterska. Avhandlingen omfattar fyra delstudier. Långvarigt sjuka barn, föräldrar och en sjuksköterska har intervjuats och barnen har ritat teckningar.I delstudie I var syftet att undersöka vad barn med långvariga sjukdomar berättar muntligt och i teckningar om sina upplevelser av att bli tröstade. Sju barn i åldern 4-10 år, med olika långvariga sjukdomar, beskrev under intervju sina upplevelser av tröst och ritade teckningar. Intervjuerna analyserades med innehållsanalys, vilket utmynnade i fyra teman: att vara fysiskt nära sin familj, att känna sig trygg och säker, att sjuksköterskor finns till hands för barnen och att barnen finns till hands för sina föräldrar och syskon. Resultatet visar att barnen litade på sjuksköterskors kunskap och yrkeskunnande, vilket var en förutsättning för att kunna känna sig trygg och hemma på sjukhus. Att vara nära sin familj upplevdes än mer betydelsefullt för att uppleva tröst.
I delstudie II var syftet att beskriva föräldrars upplevelser av vad som tröstar dem när deras barn insjuknat i cancersjukdom. Nio föräldrar till barn i åldern 3-9 år, som var inlagda på vårdavdelning och hade genomgått sin första behandling, intervjuades. Innehållsanalys utmynnade i fem teman: att uppleva tröst genom att vara nära sitt barn, att uppleva tröst genom barnets styrka, att uppleva tröst genom att känna sig hemma på vårdavdelningen, att uppleva tröst genom att vara en familj och genom att vara hemma samt att uppleva tröst genom stöd från sociala nätverk. I kommunion, en djup känsla av gemenskap med barnet och personer i sociala nätverk, upplevde föräldrarna en ny vardag som kännetecknades av att känna sig trygg i livet trots alla svårigheter och de upplevde stunder av hopp.
I delstudie III var syftet att beskriva upplevelser av vad som tröstar ett allvarligt sjukt och senare döende barn, berättat av barnet, hans mamma och hans sjuksköterska. Barnet ritade teckningar. Fältanteckningar, teckningar och intervjuer analyserades med innehållsanalys, vilket utmynnade i fyra teman: att uttrycka känslor och bli redo för tröst, att vara i kommunion, att skifta perspektiv och att finna tröst genom att vara hemma. Resultatet visar att tröst för det svårt sjuka, senare döende barnet, innebar att barnet kunde uttrycka sina känslor som barnet ville, att familjen fanns nära och var involverade i omvårdnaden av barnet, att barnet kunde vårdas hemma och att barnet upplevde en förtroendefull relation med sin sjuksköterska.
I delstudie IV var syftet att beskriva vem och vad som tröstar föräldrar, syskon, sjuksköterska och andra personer som tröstade ett svårt sjukt och senare döende barn, beskrivet av mamman och barnets sjuksköterska. Intervjuer från delstudie II analyserades med innehållsanalys och utmynnade i tio teman. Resultatet visar en bild av samverkande nätverk som kan finnas runt ett svårt sjukt barn. Den svåra situationen innebar att barnets familj bar en tung börda, men omgivna av ett tröstande nätverk som de kunde luta sig mot och dela lidande och ansvar med, kunde de finna tröst och trösta varandra.
Resultatet i avhandlingen visar att de långvarigt sjuka barnen och föräldrarna fann tröst i att kunna dela lidande med varandra. Föräldrar och sjuksköterska fann tröst i att kunna dela lidandet och ansvaret med personer i sina sociala nätverk. Modellen om tröst (Norberg m fl, 2001) kunde användas för att ge struktur till diskussionen.
Tröst genom hälsostödjande familjesamtal – Upplevelser och effekter av en familjecentrerad intervention
Dorell, Å.
(2016)
Bakgrund: Att ha en sjuk närstående som bor på ett särskilt boende
för äldre påverkar hela familjen. Familjemedlemmarna kan uppleva
känslor av saknad, skuld, maktlöshet och sorg. Det finns därför ett
behov av att utvidga omvårdnaden till att innefatta hela familjen som
ett system för att minska ohälsa hos familjer. Detta kan ske genom
familjecentrerade interventioner. Ett exempel på en familjecentrerad
intervention är hälsostödjande familjesamtal (FamHC). Det är en
vårdhandling med focus på familjens styrkor, resurser och relationer
inom familjen. Det finns begränsad kunskap om dessa
familjeinterventioner i kontexten vård och omsorg av äldre.
Syftet: Syftet med avhandlingen är att ur ett familje- och
sjuksköterskeperspektiv studera upplevelser, responser och effekter
av sjuksköterskeledda hälsostödjande familjesamtal med närstående
som har en familjemedlem boende på ett särskilt boende för äldre.
Metoder: Denna avhandling är baserad på en intervention med
FamHC genomförd vid tre särskilda boenden för äldre i norra Sverige.
Samtalens struktur är tre på varandra följande samtal varannan vecka
med skilda fokus och avslutas med ett avslutande brev. Avhandlingen
består av fyra delstudier. I studie I-II användes semistrukturerade
gruppintervjuer med närstående som analyserades med kvalitativ
innehållsanalys. I studie III användes mixad metod. Kvalitativa
resultat från intervjuer och kvantitativa resultat från instrumenten
SWED-QUAL och FHI, analyserades parallellt samt integrerades
därefter. I Studie IV intervjuades tre sjuksköterskor med
semistrukturerade individuella intervjuer. Sjuksköterskorna skrev
även dagboksanteckningar. Intervjuerna och dagböckerna
analyserades med kvalitativ innehållsanalys.
Resultat: Resultaten från studie I visar att de närstående en månad
efter deltagandet i FamHC upplevde en lindring av sitt dåliga samvete
då de krav som familjerna ställer på sig själva minskat. Vid samtalen
fick de närstående bekräftelse på att de gjorde så gott de kunde.
Genom att dela sina föreställningar med varandra genom berättelser
skapades en ökad förståelse för hela familjens upplevelse av
situationen. Studie II visar att sex månader efter samtalsseriens
avslutande upplevde familjen deltagandet i FamHC som ett delande i
en dialog med en läkande kraft. Delandet upplevdes bekräftande
vilket gjorde att de närstående upplevde samtalen som trösterika.
Studie III visar att de närståendes emotionella välbefinnande hade
förbättrats sex månader efter att ha deltagit i FamHC. Studien visar
på förbättrad kommunikation och relationer samt förbättrat
samarbete inom familjen. Studie IV visar att sjuksköterskorna
upplevde att FamHC var en tillämpbar omvårdnadsåtgärd i arbetet
med familjer. Det gav en förbättrad förståelse av familjens situation
och förbättrade relationen med närstående.
Konklusion: Den övergripande slutsatsen från resultaten i
delstudierna är att genom att delta i FamHC blev familjerna tröstade.
Samtalen skapade en arena för de närstående att berätta samt att
lyssna till varandras berättelser. Det gavs utrymme att gråta och sörja
över sin situation över att ha en sjuk familjemedlem på ett särskilt
boende. Samtalen medförde reviderade föreställningar bland
närstående och sjuksköterskorna samt en ökad förståelse och ett
bättre samarbete inom familjen och en ökad känsla av välbefinnande
hos de närstående. Hälsostödjande familjesamtal kan därmed föreslås
vara ett användbart verktyg för sjuksköterskor i deras arbete med
närstående inom kontexten särskilda boenden för äldre personer.
v
Nyckelord:
Hälsostödjande familjesamtal, Familjecentrerad omvårdnad, FamHC,
Familjeomvårdnad, Omvårdnad, Särskilt boende för äldre.
Tutorial: Teaching communicative rejecting to children with severe disabilities
Sigafoos J, Drasgow E, Reichle J, O'Reilly M, Green VA, Tait K.
(2004)
Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Tutorial: Teaching Communicative Rejecting to Children With Severe Disabilities
Sigafoos, J., Drasgow, E., Reichle, J., O'Reilly, M., Green, V. A., & Tait, K.
(2004)
Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.
Tutorial: Teaching Communicative Rejecting to Children With Severe Disabilities
Sigafoos, J., Drasgow, E., Reichle, J., O'Reilly, M., Green, V. A., & Tait, K.
(2004)
Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.
Two principles of communication - co-regulation and framing.
Fogel, A.
(1993)
Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial
Hansson, H., Rundberg, J., Zetterlind, U., Johnsson, KO., & Berglund, M.
(2007)
Abstract
BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.
Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial
Hansson H, Rundberg J, Zetterlind U, Johnsson KO, Berglund M.
(2007)
BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.
Types and Sources of Support Received by Family Caregivers of Older Adults from Diverse Racial and Ethnic Groups
Chow, J. C.-C., Auh, E. Y., Scharlach, A. E., Lehning, A. J., & Goldstein, C.
(2010)
Tänk långsiktigt – En samhällsekonomisk modell för prioriteringar som påverkar barns psykiska hälsa.
Skolverket/ Socialstyrelsen/Statens folkhälsoinstitut
(2004)
Psykisk ohälsa är ett allvarligt hälsoproblem bland barn och ungdomar och därmed ett angeläget område för samhällsinsatser. Det mesta av de resurser som samhället satsar på barn och ungdomar ges i form av generella insatser. Mödra- och barnhälsovård, förskoleverksamhet, skola, skolhälsovård, skolbarnsomsorg och ungdomsmottagningar är exempel på vanliga verksamheter. Andra samhällsinsatser (t.ex. insatser inom socialtjänsten och barn- och ungdomspsykiatrin) riktas enbart till barn och ungdomar som på olika sätt far illa eller behöver särskilt stöd. Sådana insatser kallas selektiva.
Även om barns och ungdomars psykiska hälsa och goda uppväxtvillkor är högt prioriterade områden är samhällets resurser begränsade. Det är därför viktigt att tillgängliga resurser används så väl som möjligt, dvs. att man lägger pengarna på insatser som har så bra effekter som möjligt i förhållande till vad de kostar. Syftet med denna rapport är att beskriva vikten av att ha ett sektorsövergripande och långsiktigt perspektiv när man på olika nivåer inom kommuner, landsting och stat ska prioritera mellan insatser som påverkar barns och ungdomars psykiska hälsa.
Barns och ungdomars psykiska hälsa påverkas av såväl individuella egenskaper som av faktorer i uppväxtmiljön. Generella insatser av hög kvalitet kan sannolikt förebygga och minska psykisk ohälsa hos barn och ungdomar. Eftersom de generella insatsernas innehåll, organisation och resurser har betydelse för hur barnen mår påverkar de troligen även omfattningen av de selektiva insatser som en del barn och ungdomar kan komma att behöva under sin uppväxt och längre fram i livet. Det är troligt att det fanns ett samband mellan nedskärningarna inom förskoleverksamheten, skolbarnsomsorgen och skolan under 1990-talet och den samtidiga ökningen av antalet besök inom barn- och ungdomspsykiatrin. Samtidigt kan detta vara ett tecken på att samverkan mellan t.ex. skolan och barn- och ungdomspsykiatrin inte har fungerat tillfredsställande när det gäller att ge förebyggande stöd till barn efter deras behov utifrån olika kompetenser.
Den internationella litteraturgenomgång som gjorts till rapporten visar att det finns ett visst forskningsstöd för att exempelvis föräldrastöd, personal- och lärartäthet i förskolan och skolan, särskilda pedagogiska insatser samt lärarnas kompetens har betydelse för barns och ungdomars skolprestationer och psykiska hälsa. Det bör understrykas att detta inte innebär att man säkert vet att övriga insatser saknar effekt.
Det saknas i stor utsträckning svensk forskning om effekter av generella insatser för barn och ungdomar. Bristen på relevanta studier medför svårigheter när man ska utvärdera olika insatsers samhällsekonomiska konsekvenser. Mot bakgrund av hur stor betydelse de generella verksamheterna har för barns och ungdomars uppväxtmiljö är det viktigt att kunskapen om deras effekter på barns psykiska hälsa ökar. För att detta ska vara möjligt måste man, förutom att intensifiera forskningen, lokalt satsa på att dokumentera och följa upp de insatser som ges till barn och ungdomar. Detta är ett viktigt metodutvecklingsverktyg och en grund för att utveckla beprövad erfarenhet som kan spridas, diskuteras och jämföras med andra resultat.
I rapporten presenteras en samhällsekonomisk modell där kostnaderna för generella insatser ställs mot insatsernas effekter på barns och ungdomars psykiska hälsa och de samhällsekonomiska vinster som dessa i sin tur ger upphov till. Modellen bygger på ett tänkesätt för prioriteringar som inte bara tar hänsyn till den berörda huvudmannens kostnader för en viss insats, utan också till hur kostnaderna påverkas i andra samhällssektorer och på längre sikt.
För att göra en samhällsekonomisk analys inom detta område behöver man veta vad olika tänkbara insatser kostar och vilka effekter de har på barns och ungdomars psykiska hälsa. Man behöver också veta hur detta påverkar samhällets kostnader för andra insatser på kort och lång sikt. I rapporten ges exempel på vad olika generella insatser för barn och ungdomar kostar. Dessa kostnader jämförs sedan dels med kostnader för olika selektiva insatser för barn och ungdomar, dels med exempel på samhällets kostnader för psykisk ohälsa hos vuxna personer. De beräkningar som presenteras ska ses som exempel på en analysmetod och de är inte i första hand avsedda att användas som underlag för jämförelser och val mellan olika tänkbara insatser.
Samhällets kostnader kan bli relativt höga redan på förhållandevis kort sikt om psykiska problem inte förebyggs och motverkas i ett tidigt skede. Kostnaderna för en familjehemsplacering under två år uppgår till knappt 800 000 kronor och för en HVBplacering under totalt ett år till ca 1,1 miljoner kronor. Om dessa insatser inte visar sig tillräckliga blir kostnaderna ännu högre. I rapporten ges även exempel på vad kostnaderna för psykisk ohälsa kan uppgå till om den kvarstår under vuxenlivet. Om en person utvecklar psykosociala arbetshinder kan samhällskostnaderna uppgå till omkring 2 miljoner kronor under en trettioårsperiod. Även kostnaderna för psykiska sjukdomstillstånd kan vara höga, ca 7–9 miljoner kronor enligt det exempel som valts. För en enda missbrukare kan samhällets kostnader uppgå till omkring 12–15 miljoner kronor under en trettioårsperiod beroende på hur mycket kostnaderna diskonteras.
En rimlig hypotes är att det finns en samhällsekonomisk potential i att satsa på förebyggande arbete inom de generella verksamheterna för barn och ungdomar, inte minst mot bakgrund av att de framtida selektiva insatser som kan komma att behövas är så kostsamma. Kunskapen är dock inte tillräcklig för att man med säkerhet ska kunna säga att en viss insats innebär en framtida ekonomisk vinst. För att ändå få en uppfattning kan man räkna ut hur många barn som kan få en viss insats för den kostnad som sparas in om ett enda fall av psykosociala arbetshinder, psykisk sjukdom eller missbruk förebyggs. Om man t.ex. förebygger en enda persons missbruk under vuxenlivet, kan man för samma kostnad ge stödjande utbildning som syftar till att utveckla föräldrarnas kompetens och sätt att bemöta sina barn till ca 3 400 eller 6 900 barns föräldrar beroende på hur kostnaderna diskonteras. Den här typen av utbildningar har visat sig effektiv när det gäller att förebygga utåtriktade psykiska problem hos barn och ungdomar. Det förefaller inte orimligt att man genom en så omfattande utbildningsinsats kan förhindra att minst ett av barnen kommer att leva som missbrukare. Det är vad som krävs för att insatsen ska vara samhällsekonomiskt lönsam på lång sikt.
Samhällsekonomiska analyser behöver kompletteras med en beskrivning av de fördelningseffekter som insatsen leder till. Dessa kan vara av två slag. En del handlar om att beskriva vilka barn som gynnas av insatsen. Är det de barn som är mest angelägna att nå? Den andra delen handlar om att det är viktigt att beskriva var i samhället som olika kostnader och besparingar uppstår. Vissa samhällssektorer och huvudmän kan få högre respektive lägre kostnader som en följd av insatsen, vilket det är viktigt att vara medveten om eftersom det kan påverka aktörernas incitament för att genomföra olika insatser.
I rapporten illustreras detta med ett räkneexempel som tar fasta på att samhällskostnaderna för en person med psykosociala arbetshinder under 30 år är ungefär lika höga som kostnaderna för att minska klasstorleken i grundskolan för 80 barn under ett år. Om man antar att den förebyggande insatsen kan leda till att ett fall av psykosociala arbetshinder förebyggs går samhället som helhet varken med vinst eller förlust på lång sikt. För de enskilda aktörerna ser dock bilden olika ut. Kommunen har kostnader för genomförandet av insatsen som uppgår till drygt en miljon kronor. Dessa kostnader uppvägs i viss mån av att kommunens kostnader för psykosociala arbetshinder minskar i framtiden. Kommunen har dock ändå en nettokostnad på ca 650 000 kronor. För de övriga aktörerna som påverkas av psykosociala arbetshinder, t.ex. försäkringskassan, innebär däremot insatsen en ren intäkt. Ur ett strikt ekonomiskt perspektiv framstår alltså minskad klasstorl
Unbiased Alzheimer´s caregiver health assessment
Chang, C.
(2008)
Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD.
Bove DG, Zakrisson AB, Midtgaard J, Lomborg K, Overgaard D.
(2016)
AIMS AND OBJECTIVES: To explore how spouses of patients with severe chronic
obstructive pulmonary disease experience their role as informal caregiver.
BACKGROUND: Informal caregiver spouses are of pivotal importance in the way that
patients with chronic obstructive pulmonary disease cope with their daily life,
including their opportunity to stay at home and avoid hospitalisations in the
last stages of the disease. However, caregiving is associated with increased
morbidity and mortality among caregivers. Further understanding of the role as an
informal caregiver spouse of patients with severe chronic obstructive pulmonary
disease is needed to develop supportive interventions aimed at reducing the
caregiver burden.
DESIGN: The study had a qualitative exploratory design. The data collection and
analysis were based on framework method. Framework method is a thematic
methodology and consists of five key stages: familiarisation, identifying a
thematic framework, indexing, charting and mapping & interpretation.
METHODS: Three focus groups were conducted in November 2013 with 22 spouses of
patients with severe chronic obstructive pulmonary disease.
RESULTS: Undefined and unpredictable responsibility was found to be the
overarching theme describing the informal caregiver role. Underlying themes were:
being constantly in a state of alertness, social life modified, maintaining
normality, ambivalence in the relationship and a willingness to be involved.
CONCLUSIONS: The informal caregiver spouses experienced ambiguity about
expectations from their private and the health professionals' surroundings. The
informal caregiver spouses wanted to provide meaningful care for their partners,
but sought knowledge and support from the health professionals.
RELEVANCE TO CLINICAL PRACTICE: We recommend that nurses take on the
responsibility for including the informal caregiver spouses in those aspects of
decision-making that involve the common life of the patients and their spouses.
Understanding "Successful aging" : Cultural and migratory perspectives
Torres, S.
(2001)
Understanding and improving the burden and unmet needs of informal caregivers of homebound patients enrolled in a home-based primary care program.
Ornstein, K., Smith, K. L., & Boal, J.
(2009)
Understanding and treating borderline personality disorder : a guide for professionals and families
Gunderson, J. G. and P. D. Hoffman
(2005)
Understanding autism : parents, doctors, and the history of a disorder
Silverman, C.
(2011)
Understanding family care: A Multidimensional Model of Caring and Coping
Nolan, M., Grant, G., & Keady, J.
(1996)
How are the burdens and difficulties of caregiving balanced by the satisfactions experienced? * How do the demands of caregiving change over time and what are the policy and practice implications of such changes? * How is a balance achieved between the needs of the caregiver and the cared-for person? The importance of family (informal) care both in making a reality of community care policies and in helping to sustain the quality of life of people who require support to remain within their homes is beyond doubt. However, whilst a considerable research and practice literature has developed in this area over the last ten years there remains much to learn about caring at both conceptual and practice levels. There is in particular a need to develop more dynamic models which account for the changing nature of care over time and integrates the perspectives of carer, cared-for person and the formal service network. Based on several years research conducted by the authors, Understanding Family Care integrates a number of theories and perspectives in order to provide a more holistic understanding of the needs of carers. Emphasis is placed on providing a balanced picture which recognizes both the burdens and satisfactions of caring, in addition to the coping efforts that carers employ. A new longitudinal model of caring is described and the various stages and processes are explored. Although the focus is primarily on the carer the perspectives of the cared-for person are not ignored and a model is presented which aids the integration of disparate viewpoints. In addition to theoretical and methodological debates, implications for policy and practice are fully explored. Understanding Family Care is recommended reading for practitioners and managers in the health and social services, as well as students of social science, nursing, gerontology and social work.
Understanding self-determination and families of young children with disabilities in home environments
Brotherson MJ, Cook CC, Erwin EJ, Weigel CJ.
(2008)
This article is about emergent self-determination for young children with disabilities in their home environments. The purpose of this study was to better understand family and home characteristics and how they influence the ways in which families can support the development of self-determination for their children with disabilities. Thirty families of young children with disabilities were interviewed, and their homes were systematically observed. Using a grounded theory design, an emergent model was developed that examined family and home context and the influence of context on the strategies that families used to support self-determination. Future research and practice implications of this research for supporting families are discussed.
Predicting Language Outcomes for Children Learning Augmentative and Alternative Communication: Child and Environmental Factors
Brady, N. C., Thiemann-Bourque, K., Fleming, K., & Matthews, K.
(2013)
PurposeTo investigate a model of language development for nonverbal preschool-age children learning to communicate with augmentative or alternative communication.
MethodNinety-three preschool children with intellectual disabilities were assessed at Time 1, and 82 of these children were assessed 1 year later, at Time 2. The outcome variable was the number of different words the children produced (with speech, sign, or speech-generating devices). Children's intrinsic predictor for language was modeled as a latent variable consisting of cognitive development, comprehension, play, and nonverbal communication complexity. Adult input at school and home, and amount of augmentative or alternative communication instruction, were proposed mediators of vocabulary acquisition.
ResultsA confirmatory factor analysis revealed that measures converged as a coherent construct, and a structural equation model indicated that the intrinsic child predictor construct predicted different words children produced. The amount of input received at home, but not at school, was a significant mediator.
ConclusionsThe hypothesized model accurately reflects a latent construct of Intrinsic Symbolic Factor (ISF). Children who evidenced higher initial levels of ISF and more adult input at home produced more words 1 year later. The findings support the need to assess multiple child variables and suggest interventions directed to the indicators of ISF and input.
Predicting Posttraumatic Stress Symptoms in Children Following Hurricane Katrina:A Prospective Analysis of the Effect of Parental Distress and Parenting Practices
Kelly, M.-L., Self-Brown, S., Lee, B., Bossoin, J. V., Hernandes, B. C., & Gordon, A. T.
(2010)
Research exhibits a robust relation between child hurricane exposure, parent distress, and child posttraumatic stress disorder (PTSD). This study explored parenting practices that could further explicate this association. Participants were 381 mothers and their children exposed to Hurricane Katrina. It was hypothesized that 3–7 months (T1) and 14–17 months (T2) post-Katrina: (a) hurricane exposure would predict child PTSD symptoms after controlling for history of violence exposure and (b) hurricane exposure would predict parent distress and negative parenting practices, which, in turn, would predict increased child PTSD symptoms. Hypotheses were partially supported. Hurricane exposure directly predicted child PTSD at T1 and indirectly at T2. Additionally, several significant paths emerged from hurricane exposure to parent distress and parenting practices, which were predictive of child PTSD.
Predicting stability and change in loneliness in later life
Newall, N. E. G.
(2014)
This study examined potential discriminators of groups of older adults showing different patterns of stability or change in loneliness over 5 years: those who became lonely, overcame loneliness, were persistently lonely, and were persistently not lonely. Discriminant function analysis results showed that the persistently lonely, compared with the persistently not lonely, were more often living alone, widowed, and experiencing poorer health and perceived control. Moreover, changes in living arrangements and perceived control predicted loneliness change. In conclusion, perceiving that one is able to meet social needs is a predictor of loneliness and loneliness change and appears to be more important than people's friendships. Because the predictors were better able to predict entry into loneliness, results point to the promise of prevention approaches to loneliness interventions.
Spousal care-giving arrangements in Europe. The role of gender, socio-economic status and the welfare state
Ariane Bertogg, Susanne Strauss
(2020)
Abstract
Spouses (and partners) are the most important source of care in old age. Informal care for frail spouses is provided by both sexes and across all socio-economic backgrounds and welfare policy contexts. There are, however, interesting differences as to whether spouses care alone, receive informal support from other family members or formal support from professional helpers, or outsource the care of their spouse completely. The present article contributes to the literature by differentiating between solo spousal care-giving and shared or outsourced care-giving arrangements, as well as between formal and informal care support. Moreover, we show how care-giving arrangements vary with gender, socio-economic status and welfare policy. Adding to previous research, we compare 17 countries and their expenditures on two elder-care schemes: Cash-for-Care and Care-in-Kind. The empirical analyses draw on the most recent wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) data from 2015. Our results show that men have a higher propensity to share care-giving than women, albeit only with informal supporters. As expected, welfare policy plays a role insofar as higher expenditure on Cash-for-Care schemes encourage informally outsourced care-giving arrangements, whereas Care-in-Kind reduce the likelihood for informally shared or outsourced care-giving arrangements. Moreover, the influence of these welfare policy measures differs between individuals of different socio-economic status but not between men and women.
Predictors of caregiver burden in caregivers of individuals with dementia
Kim H, Chang M, Rose K, Kim S.
(2012)
Aims: This article is a report on a study of the multidimensional predictors of caregiver burden in caregivers of individuals with dementia using nationally representative data. Background: Caregiver burden affects the health of both caregivers and their care‐recipients. Although previous studies identified various predictors of caregiver burden, these predictors have not been confirmed in nationally representative population. Methods: Data for this secondary analysis was provided by the National Alliance for Caregiving, American Association of Retired Persons. The data were collected through a telephone survey of randomly selected adults in seven states in 2003 (weight adjusted n = 302). Descriptive statistics, inter‐correlation analysis and a hierarchical multiple regression analysis were performed. Results/findings. Disease‐related factors were the most significant predictors, explaining 16% of caregiver burden; these were followed by caregiver socio‐demographical factors and caregiving‐related factors (F = 21·28, P < 0·01). Significant individual predictors were impairment of activities of daily living or instrumental activities of daily living, the number of hours of caregiving, use of coping strategies, co‐residence, spousal status and caregiver gender (P < 0·05). Conclusion. Impaired function in care‐recipients predicts caregiver burden, and also interacts with demographical‐ and caregiving‐related factors. Thus, it will be beneficial to both care‐recipients and caregivers to target nursing interventions and community services to improve the functional abilities of individuals with dementia.
Predictors of life situation among significant others of depressed or aphasic stroke patients
Franzen-Dahlin, A., Laska, A. C, Larson, J., Wredling, R., Billing, E. & Murray, V.
(2008)
Preliminary study of a communication intervention for family caregivers and spouses with dementia.
Williams CL., Newman D., Hammar LM.
(2018)
OBJECTIVE: This study was to designed to examine the feasibility and preliminary outcomes of CARE: Caring About Relationships and Emotions, a 10-week, home-based, intervention to support married couples affected by dementia. METHODS: Fifteen older couples participated in a single group repeated measures feasibility study. Weekly, video-recorded conversations over 10 weeks were used to rate communication using the Verbal/Nonverbal Interaction Scale for caregivers and care receivers. RESULTS: Accounting for mental status of care recipients, the ratio of social to unsocial communication showed a significant improvement across sessions-an average of 4.46 points per session [β = 4.46, t(10) = 1.96, p = .039]. Spouse caregiver (CG) communication showed a significant decrease in the number of disabling communications with approximately .65 decreased comments per session [β = 0.654, t(11) = -2.61, p = .024]. CONCLUSIONS: At home dyadic, relationship-focused psychoeducational intervention to improve communication in spouses affected by dementia has the potential to improve communication outcomes. Creative ways of working with couples are needed to help them sustain their relationships and maintain their health.
Prenatal alcohol exposure and neurodevelopmental disorders in children adopted from eastern Europe.
Landgren M, Svensson L, Strömland K, Andersson Grönlund M.
(2010)
OBJECTIVES:
The purposes of this investigation were to determine the frequencies of and associations between different neurodevelopmental disorders and to study the potential lasting effects of alcohol on children adopted from eastern Europe.
METHODS:
In a population-based, prospective, observational, multidisciplinary, cross-sectional, cohort study of 71 children adopted from eastern Europe, children were assessed 5 years after adoption, from pediatric, neuropsychological, and ophthalmologic perspectives.
RESULTS:
Fetal alcohol spectrum disorders, that is, fetal alcohol syndrome (FAS), partial FAS, and alcohol-related neurodevelopmental disorders, were identified for 52% of children; FAS was found for 30%, partial FAS for 14%, and alcohol-related neurodevelopmental disorders for 9%. Alcohol-related birth defects were found for 11% of children, all of whom also were diagnosed as having FAS. Mental retardation or significant cognitive impairment was found for 23% of children, autism for 9%, attention-deficit/hyperactivity disorder for 51%, and developmental coordination disorder for 34%.
CONCLUSIONS:
Fetal alcohol spectrum disorders and neurodevelopmental disorders were common in this long-term follow-up study of children adopted from orphanages in eastern Europe. Maternal alcohol consumption during pregnancy has long-lasting adverse effects, causing structural, behavioral, and cognitive damage despite a radically improved environment.
Prenting Stress Index: Professional Manual (3rd ed).
Abidin RR
(1995)
The PSI addresses the early identification and assessment needs recognized by the Report of the Surgeon General's Conference on Children's Mental Health (January 2001). It is well-suited for use in primary health care and pediatric practices, as well as in other settings and programs that serve at-risk children and families or provide early childhood educational and developmental experiences. The PSI is designed for the early identification of parenting and family characteristics that fail to promote normal development and functioning in children, children with behavioral and emotional problems, and parents who are at risk for dysfunctional parenting. It can be used with parents of children as young as one month.
The PSI was developed on the theory that the total stress a parent experiences is a function of certain salient child characteristics, parent characteristics, and situations that are directly related to the role of being a parent. The PSI identifies dysfunctional parenting and predicts the potential for parental behavior problems and child adjustment difficulties within the family system. Although its primary focus is on the preschool child, the PSI can be used with parents whose children are 12 years of age or younger.
The PSI consists of 120 items and takes less than 30 minutes for the parent to complete. It yields a Total Stress Score, plus scale scores for both Child and Parent Characteristics, which pinpoint sources of stress within the family.
The child characteristics are measured in six subscales: Distractibility/Hyperactivity, Adaptability, Reinforces Parent, Demandingness, Mood, and Acceptability. The parent personality and situational variables component consists of seven subscales: Competence, Isolation, Attachment, Health, Role Restriction, Depression, and Spouse. The PSI is particularly helpful in:
Early identification of dysfunctional parent-child systems.
Prevention programs aimed at reducing stress.
Intervention and treatment planning in high-stress areas.
Family functioning and parenting skills.
Assessment of child-abuse risk.
Forensic evaluation for child custody.
Validated With Diverse Populations
The PSI has been empirically validated to predict observed parenting behavior and children's current and future behavioral and emotional adjustment, not only in a variety of U.S. populations but in a variety of international populations. The transcultural research has involved populations as diverse as Chinese, Portuguese, French Canadian, Italian, and Korean. These studies demonstrated comparable statistical characteristics to those reported in the PSI Manual, suggesting that the PSI is a robust diagnostic measure that maintains its validity with diverse non-English-speaking cultures. This ability to effectively survive translation and demonstrate its usefulness as a diagnostic tool with non-English-speaking populations suggests that it is likely to maintain its validity with a variety of different U.S. populations.
Components
The Manual has 118 pages of information, including reference group profiles and case illustrations, Hispanic norms, and expanded norms by age. A 5th-grade reading level is required.
The PSI consists of a 120-item test booklet with an optional 19-item Life Stress scale and an all-in-one self-scoring answer sheet/profile form. It yields 17 scores, including seven Child Domain scores, eight Parent Domain scores, and a Total Stress score, plus the optional Life Stress score.
The PSI Short Form is a direct derivative of the full-length test and consists of a 36-item self-scoring questionnaire/profile. It yields a Total Stress score from three scales: Parental Distress, Parent-Child Dysfunctional Interaction, and Difficult Child.
Stages of change in psychotherapy: A follow-up report
McConnaughy EA, DiClemente CC, Prochaska JO, Velicer WF.
(1989)
327 adult outpatients (aged 18–62 yrs) completed the Stages of Change (SOC) Scales (E. A. McConnaughy et al; see record 1984-11195-001), the Millon Clinical Multiaxial Inventory, and a symptom checklist battery during intake. Results confirm the McConnaughy et al findings that the SOC Scales provide a reliable method of measuring SOC in psychotherapy. Four distinct stages (precontemplation, contemplation, action, and maintenance) and 8 stage profiles emerged. Despite differences between degree of psychopathology in the 2 studies' populations, the SOC emerged as a reliable phenomenon for clients entering therapy. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Standing guard - Being a relative to a hospitalised, elderly person
Lindhardt, T., Bolmsjö, I. A., & Rahm Hallberg, I.
(2006)
Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.
Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology
Standing guard - Being a relative to a hospitalised, elderly person
Lindhardt, T., Bolmsjö, I. A., & Rahm Hallberg, I.
(2006)
Caregiving relatives continue to feel primarily responsible for the care and well-being of elderly persons, when they are admitted to hospital. Although involvement of relatives in decision-making is rare, and the hospitalisation therefore may be a frustrating experience, little is known of relatives' experience of the hospitalisation of elderly persons from a life-world perspective. In this phenomenological study, hospital admission was a time of crisis and possible transition for the relatives, and the encounter with the professional system added to the relatives' emotional and physical burden. They felt responsible for protecting the elderly person and ensuring they received sufficient care. The history of the relationship and care was the frame of reference in which the hospital stay of the elderly person was reflected and understood. Feelings, roles and experiences were brought into the hospital setting and formed the basis for the relatives' expectations, values and conducts there.
Keywords
Relatives; Family attitudes; Family role; Family relations; Aged hospitalised; Elderly; Caregivers psychosocial factors; Adult children; Aging parents; Decision making; Professional–family relations; Collaboration; Lived experience; Phenomenology
Prevalence and characteristics of child physical abuse in Sweden - findings from a population-based youth survey
Annerbäck, E. M., Wingren, G., Svedin, C. G., & Gustafsson, P. A.
(2010)
Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.
Stepped care in psychological therapies: access, effectiveness and efficiency. Narrative literature review.
Bower, P., & Gilbody, S.
(2012)
BACKGROUND:
There is a significant gap between the demand for psychological therapy services and the available supply. One proposal to overcome this problem is to increase efficiency of provision through the adoption of briefer 'minimal interventions' within stepped care models.
AIMS:
To examine the theoretical underpinnings of stepped care, together with the practicalities of the adoption of this system of care.
METHOD:
Narrative literature review.
RESULTS:
The potential clinical and economic benefits of stepped care are dependent upon underlying assumptions of equivalence in terms of clinical outcomes, efficiency in terms of resource use and costs, and acceptability of 'minimal interventions' to patients and therapists. Illustrative studies of these issues are considered.
CONCLUSIONS:
Although psychological services might benefit from the adoption of the stepped care model, a substantial research agenda needs to be fulfilled before a judgement can be made as to whether stepped care might be an efficient method of delivering psychological services.
Stereotypes about caregiving and lessons from the Swedish panorama of care
Jegermalm, M., & Sundström, G.
(2015)
This article analyzes the panorama of care provision in Sweden from the informal carers' perspective. We consider informal care, publicly financed services, for-profit agencies and voluntary organizations, using a survey conducted in 2009. Most cared-for persons with minor needs living in a separate household are helped also by others, but only a tenth use public services or other providers. About half of cared-for persons with major needs living in a separate household receive care also from other informal carers as well as public services. Only 1 in 10 of them relied on no one else beyond the carer interviewed. Among intra household carers—a minority of all persons cared for—it was common that the carer was alone in his/her commitment, without any contributions from public services or others. For the large majority of informal carers it is not a solitary undertaking as the commitment is often shared with family members and others and/or public services. The results suggest that ideal types about complementarity and substitution may understate the complex interplay between informal care and the public services (and potential other providers). The findings may suggest a need for more empirical research about 'Care Cultures' and expose simplistic representations of welfare societies; informal care plays a major—and increasing—role also in Sweden, a country with extensive public services.
Denna artikel analyserar omsorgspanoramat i Sverige från de informella hjälp- och omsorgsgivarnas perspektiv. Vi beaktar dem, offentligt finansierad service, marknadsbaserad omsorg och frivilliga organisationer, med data från en survey år 2009. De som hade ett mindre behov av hjälp och som inte sammanbor med den informelle hjälpgivaren - intervjupersonen - får ofta ytterligare hjälp från någon annan, men bara en tiondel använder offentligt finansierade tjänster. Ungefär hälften av de som hade ett omfattande omsorgsbehov fick, utöver informell omsorg, hjälp från den offentliga omsorgen. Tio procent fick hjälp endast från den intervjuade omsorgsgivaren. Omsorgsgivare för någon i det egna hushållet var ofta ensamma i sitt åtagande som omsorgsgivare, utan ytterligare hjälp från någon annan, men de utgör en minoritet. För de flesta informella omsorgsgivare är det inte ett ensamt åtagande, utan delas ofta med andra närstående och/eller offentlig service och omsorg. Resultaten tyder på att idealmodeller om komplementaritet och substitution mellan olika omsorgsaktörer underskattar det komplexa samspelet mellan informell och offentlig omsorg (och eventuella andra aktörer). Studien visar att det behövs mer empirisk forskning kring 'omsorgskulturer' och förenklade modeller av välfärdssamhällen. Informell omsorg spelar en stor - och växande - roll även i Sverige, ett land med omfattande offentlig omsorg.
Stereotypes, parents with intellectual disability and child protection
McConnell, D., & Llewellyn, G.
(2002)
As more people with intellectual disability have children, serious concerns are being raised about the unusually high rate at which their children are removed. This review describes how parents with intellectual disability fare in child protection and court processes and offers both an empirical and a legal critique of frequently encountered presumptions about their parenting capacity.
Prevalence of alcohol use before and during pregnancy and predictors of drinking during pregancy: a cross sectional study in Sweden.
Skagerström, J., Alehagen, S., Häggström-Nordin, E., Årestedt, K., & Nilsen, P.
(2013)
Background
There is a paucity of research on predictors for drinking during pregnancy among women in Sweden and reported prevalence rates differ considerably between studies conducted at different antenatal care centres. Since this knowledge is relevant for preventive work the aim of this study was to investigate these issues using a multicenter approach.
Methods
The study was conducted at 30 antenatal care centers across Sweden from November 2009 to December 2010. All women in pregnancy week 18 or more with a scheduled visit were asked to participate in the study. The questionnaire included questions on sociodemographic data, alcohol consumption prior to and during the pregnancy, tobacco use before and during pregnancy, and social support.
Results
Questionnaires from 1594 women were included in the study. A majority, 84%, of the women reported alcohol consumption the year prior to pregnancy; about 14% were categorized as having hazardous consumption, here defined as a weekly consumption of > 9 standard drinks containing 12 grams of pure alcohol or drinking more than 4 standard drinks at the same occasion. Approximately 6% of the women consumed alcohol at least once after pregnancy recognition, of which 92% never drank more than 1 standard drink at a time. Of the women who were hazardous drinkers before pregnancy, 19% reduced their alcohol consumption when planning their pregnancy compared with 33% of the women with moderate alcohol consumption prior to pregnancy. Factors predicting alcohol consumption during pregnancy were older age, living in a large city, using tobacco during pregnancy, lower score for social support, stronger alcohol habit before pregnancy and higher score for social drinking motives.
Conclusions
The prevalence of drinking during pregnancy is relatively low in Sweden. However, 84% of the women report drinking in the year preceding pregnancy and most of these women continue to drink until pregnancy recognition, which means that they might have consumed alcohol in early pregnancy. Six factors were found to predict alcohol consumption during pregnancy. These factors should be addressed in the work to prevent alcohol-exposed pregnancies.
Prevalence of depressive symptoms in late pregnancy and postpartum
Josefsson, A., Berg, G., Nordin, C. & Sydsjö, G.
(2001)
BACKGROUND:
Postnatal depression refers to a non-psychotic depressive episode that begins in or extends into the postpartum period. The aims of this study were to examine the prevalence of depressive symptoms in a pregnant and later postnatal population, to determine the natural course of these symptoms and whether there is an association between antenatal and postnatal depressive symptomatology.
METHODS:
A longitudinal study with a total population of 1,558 consecutively registered pregnant women in the southeast region of Sweden. Presence of depressive symptoms was measured with the Edinburgh Postnatal Depression Scale on four occasions namely in gestational week 35-36, in the maternity ward, 6-8 weeks and 6 months postpartum.
RESULTS:
The prevalence of depressive symptoms during late pregnancy was 17%; in the maternity ward 18%; 6-8 weeks postnatally 13%; and 6 months postnatally, 13%. A correlation between antenatal and postnatal depressive symptoms was found (r=0.50, p<0.0001).
CONCLUSION:
Detection of women at risk for developing postnatal depressive symptoms can be done during late pregnancy. Antenatal care clinics constitute a natural and useful environment for recognition of women with depressive symptoms.
Prevalence of parental mental illness in Australian families
Maybery, D.J., Reupert, A., Patrick, K., Goodyear, M., & Crase, L.
(2009)
AIMS AND METHOD
To provide multiple estimates of the numbers of Australian and Victorian families and children living in families where a parent has had a mental illness. We used the Australian Bureau of Statistics Victorian Mental Health Branch service usage and data collected from 701 community participants to triangulate prevalence information.
RESULTS
According to population estimates, 23.3% of all children in Australia have a parent with a non-substance mental illness, 20.4% of mental health service users have dependent children and 14.4% of the community study participants report having at least one parent with a mental illness.
CLINICAL IMPLICATIONS
The multiple prevalence estimates of the numbers of children in families with parental mental illness provide fundamental information for psychiatric policy, planning and programming.
Prevalence of serious mental disorder in 7000 refugees resettled in western countries: a systematic review
Fazel.
(2005)
BACKGROUND:
About 13 million people are classified as refugees worldwide, and many more former refugees have been granted citizenship in their new countries. However, the prevalence of post-traumatic stress disorder, major depression, or psychotic illnesses in these individuals is not known. We did a systematic review of surveys about these disorders in general refugee populations in western countries.
METHODS:
We searched for psychiatric surveys that were based on interviews of unselected refugee populations and that included current diagnoses of post-traumatic stress disorder, major depression, psychotic illnesses, or generalised anxiety disorder. We did computer-assisted searches, scanned reference lists, searched journals, and corresponded with authors to determine prevalence rates of these mental disorders and to explore potential sources of heterogeneity, such as diagnostic criteria, sampling methods, and other characteristics.
FINDINGS:
20 eligible surveys provided results for 6743 adult refugees from seven countries, with substantial variation in assessment and sampling methods. In the larger studies, 9% (99% CI 8-10%) were diagnosed with post-traumatic stress disorder and 5% (4-6%) with major depression, with evidence of much psychiatric comorbidity. Five surveys of 260 refugee children from three countries yielded a prevalence of 11% (7-17%) for post-traumatic stress disorder. Larger and more rigorous surveys reported lower prevalence rates than did studies with less optimum designs, but heterogeneity persisted even in findings from the larger studies.
INTERPRETATION:
Refugees resettled in western countries could be about ten times more likely to have post-traumatic stress disorder than age-matched general populations in those countries. Worldwide, tens of thousands of refugees and former refugees resettled in western countries probably have post-traumatic stress disorder.
Preventing Child Placement in Substance-Abusing Families: Research-Informed Practice
Dore MM, Doris JM.
(1998)
The authors present finding from their study of a placement prevention program designed to facilitate addiction treatment for substance-abusing mothers and other primary caregivers reported for child maltreatment. Relationships between involvement in the program, the status of addiction treatment, and the variety of outcomes for caregivers and their children were tested. Findings indicate that nearly half of the participants were able to complete addiction treatment and achieve sobriety. Those who used the program's child day care component were three times more likely to complete treatment. Implications for confronting the problem of substance-abusing caregivers in the child welfare system are drawn.
Preventing Child Placement in Substance-Abusing Families: Research-Informed Practice.
Dore MM, Doris JM.
(1998)
The authors present finding from their study of a placement prevention program designed to facilitate addiction treatment for substance-abusing mothers and other primary caregivers reported for child maltreatment. Relationships between involvement in the program, the status of addiction treatment, and the variety of outcomes for caregivers and their children were tested. Findings indicate that nearly half of the participants were able to complete addiction treatment and achieve sobriety. Those who used the program's child day care component were three times more likely to complete treatment. Implications for confronting the problem of substance-abusing caregivers in the child welfare system are drawn.
Preventing Mental, Emotional and Behaviour Disorders Among Young People. Progress and Possibilities
National Research Council and Institute of Medicin.
(2009)
This report builds on a highly valued predecessor, the 1994 Institute of Medicine (IOM) report entitled Reducing Risks for Mental Disorders: Frontiers for Preventive Intervention Research. That report provided the basis for understanding prevention science, elucidating its then-existing research base, and contemplating where it should go in the future. This report documents that an increasing number of mental, emotional, and behavioral problems in young people are in fact preventable. The proverbial ounce of prevention will indeed be worth a pound of cure: effectively applying the evidence-based prevention interventions at hand could potentially save billions of dollars in associated costs by avoiding or tempering these disorders in many individuals. Furthermore, devoting significantly greater resources to research on even more effective prevention and promotion efforts, and then reliably implementing the findings of such research, could substantially diminish the human and economic toll.
Preventing Mental, Emotional, and Behavioral Disorders Among Young People : Progress and Possibilities
Warner KE, Boat TF, O'Connell ME, National Research C.
(2009)
Mental health and substance use disorders among children, youth, and young adults are major threats to the health and well-being of younger populations which often carryover into adulthood. The costs of treatment for mental health and addictive disorders, which create an enormous burden on the affected individuals, their families, and society, have stimulated increasing interest in prevention practices that can impede the onset or reduce the severity of the disorders.
Prevention practices have emerged in a variety of settings, including programs for selected at-risk populations (such as children and youth in the child welfare system), school-based interventions, interventions in primary care settings, and community services designed to address a broad array of mental health needs and populations.
Preventing Mental, Emotional, and Behavioral Disorders Among Young People updates a 1994 Institute of Medicine book, Reducing Risks for Mental Disorders, focusing special attention on the research base and program experience with younger populations that have emerged since that time.
Researchers, such as those involved in prevention science, mental health, education, substance abuse, juvenile justice, health, child and youth development, as well as policy makers involved in state and local mental health, substance abuse, welfare, education, and justice will depend on this updated information on the status of research and suggested directions for the field of mental health and prevention of disorders.
Preventing preschool externalizing behavior problems through video-feedback intervention in infancy
VELDERMAN, M. K., BAKERMANS-KRANENBURG, M. J., JUFFER, F., VAN IJZENDOORN, M. H., MANGELSDORF, S. C. & ZEVALKINK, J.
(2006)
In the present study (1) intervention effects on children's preschool behavior problems were evaluated in a high risk sample with an overrepresentation of insecure adult attachment representations in 77 first-time mothers, and (2) predictors and correlates of child problem behavior were examined. Early short-term video-feedback intervention to promote positive parenting (VIPP) focusing on maternal sensitivity and implemented in the baby's first year of life significantly protected children from developing clinical Total Problems at preschool age. Also, compared with the control group, fewer VIPP children scored in the clinical range for Externalizing Problems. No intervention effects on Internalizing clinical problem behavior were found. The VIPP effects on Externalizing and Total clinical Problems were not mediated by VIPP effects on sensitivity and infant attachment or moderated by mother or child variables. Maternal satisfaction with perceived support appeared to be associated with less children's Internalizing, Externalizing, and Total Problems. More research is needed to find the mechanisms triggered by VIPP, but the outcomes could be considered as promising first steps in the prevention of disturbing, externalizing behavior problems in young children.
Prevention and Intervention Strategies With Children of Alcoholics
Emshoff JG, Price AW.
(1999)
Objective. This article was designed to give pediatricians a basic knowledge of the needs of children who live in families with alcoholism. It briefly presents issues involved in the identification and screening of such individuals and provides primary attention to a variety of preventive and treatment strategies that have been used with school children of alcoholics (COAs), along with evidence of their effectiveness.
Methodology. A literature search including both published and unpublished descriptions and evaluations of interventions with COAs.
Results. The scope and nature of the problems of growing up in an alcoholic home are presented. The risk and protective factors associated with this population have been used as a foundation for preventive and treatment interventions. The most common modality of prevention and intervention programs is the short-term small group format. Programs for COAs should include the basic components of information, problem- and emotion-focused coping skills, and social and emotional support. Physicians are in a unique position to identify and provide basic services and referrals for COAs. School settings are the most common intervention sites, but family and broad-based community programs also have shown promise in alcohol and other drug prevention.
Conclusions. Several COA interventions have demonstrated positive results with respect to a variety of measures including knowledge of program content, social support, coping skills, and emotional functioning. Rigorous studies are needed to understand better the complex ways children deal with parental alcoholism. A need remains for empirically sound evaluations and for the delineation of research findings.