Bibliotek

Sök aktuell litteratur inom anhörigområdet

Sökresultat

Din sökning på resulterade i 8019 träffar

‘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.

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.

‘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.

”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.

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.

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 anhörigvårdare begår övergrepp

Erlingsson, C. (2012)

Vad är det som ligger bakom övergrepp mot en äldre familjemedlem som man vårdar? Är det helt och hållet situationsbundet till de yttre omständigheterna eller spelar subjektiva upplevelser och individuella egenskaper hos anhörigvårdaren någon roll? Det skriver Christen Erlingsson, lektor vid Linnéuniversitetet.

Att vara anhörigvårdare kan innebära stor börda, oro och stress. Dessa upplevelser anses vara konsekvenser av situationen runt omkring anhörigvårdaren, den sjuke familjemedlemmens diagnos, och tillgång till eller brist på samhällsresurser och stöd. En fråga är om denna tunga börda och stress kan leda till att övergrepp mot den sjuke begås. Det finns relativt lite forskning kring övergrepp mot äldre om man jämför med forskning inom andra former av familjevåld såsom kvinnofridsbrott och övergrepp mot barn. Vad gäller anhörigvårdandet och övergrepp har forskare endast kvalificerade gissningar att mellan 5–23 procent av anhörigvårdare begår övergrepp mot den de vårdar.

I USA genomfördes för några år sedan en forskningssammanställning med slutsatsen att det inte fanns något entydigt stöd för att konstatera ett samband mellan att vara anhörigvårdare och ökad risk för att övergrepp begås. En anledning till denna slutsats var att det är så få anmälda övergreppsfall jämfört med det stora antalet äldre som vårdas i hemmet av familj eller släktningar. Man kan spegla detta mot att många professionella vårdare, frivilliga och andra berörda personer uppfattar att anhörigvårdandet utan tvekan innebär en ökad risk för övergrepp. De menar att utifrån egna erfarenheter och sunt förnuft förstår man att de påfrestande situationer som skapas i anhörigvårdande situationer, till exempel där den sjuke lider av Alzheimers eller annan demenssjukdom, kan bli så pass provocerande att risken för övergrepp ökar. Till bilden hör att uppemot en femtedel av tillfrågade anhörigvårdare uppger att de fruktar att de en dag kommer att begå övergrepp mot den de vårdar.

En tredje infallsvinkel är att den övervägande majoriteten av anhörigvårdare aldrig begår övergrepp. Det finns anhörigvårdare som upplever positiv hälsa och tillfredsställelse med vårdandet där övergrepp inte förekommer trots påfrestande situationer. Andra anhörigvårdare däremot, som befinner sig i likartade situationer, upplever ohälsa, ökande frustration och som till slut hamnar i situationer där de begår övergrepp mot den sjuke. Man måste fråga sig; vad är det som ligger bakom övergrepp mot en äldre familjemedlem som man vårdar? Är det helt och hållet situationsbundet till de yttre omständigheterna eller spelar subjektiva upplevelser och individuella egenskaper hos anhörigvårdaren någon roll? Ett möjligt svar på dessa frågor upptäcktes överraskande nog under arbetet med en kunskapsöversikt om anhörigvårdares hälsa. Kunskapsöversikten, som togs fram av Nationellt kompetenscentrum Anhöriga, är en sammanställning av svenska forskningsrapporter med syftet att beskriva äldre anhörigvårdares hälsa i samband med att vårda en sjuk familjemedlem.

De allra viktigaste faktorerna som påverkar anhörigvårdarens hälsa, visade sig vara de egna föreställningarna om vårdandet samt upplevelsen av ömsesidighet i de personliga relationerna med den sjuke, andra familjemedlemmar och med stödpersonal. Kunskapsöversiktens resultat visade att ingångsläget för de flesta anhörigvårdare kan beskrivas som att successivt glida in i vårdandet. Under denna fas finns behov av att ständigt justera sitt eget liv. De sociala kontakterna försvinner alltmer och anhörigvårdaren lever ett krympande liv, blir mer och mer isolerad i en föränderlig situation präglad av oro och osäkerhet. Att oroa sig blir en del av vardagen. Anhörigvårdaren bär med sig grundläggande föreställningar om vårdandet, som till exempel "jag behövs", "det är min moraliska plikt att vårda och återgälda den hjälp jag tidigare fått" och "makarna är en enhet och bör stödja varandra". Resultatet visade att det verkar finnas två grupper med anhörigvårdare; en som upplever hälsa och en grupp som upplever ohälsa i form av ökande stress och utmattning.

Bland de anhörigvårdare som upplever hälsa, fanns ömsesidighet i de personliga relationerna och upplevelsen av att vara sedd i sin roll som anhörigvårdare och uppleva mening i vårdandet. Dessa anhörigvårdare bar med sig föreställningar som till exempel, "man får ta det som det kommer", "sjukdom är en del av livet och livet innebär ständig anpassning", "det finns andra än jag som också är anhörigvårdare", "det är viktigt att vara tillsammans med familjen och vänner", och "äkta vänner kommer att vara kvar och acceptera förändringarna". Vad gäller risken för att hamna i övergreppssituationer, är det den andra gruppen anhörigvårdare som är mest i blickfånget, det vill säga de som upplever ohälsa. Här saknas känslan av ömsesidighet i personliga relationer. Anhörigvårdaren kan istället uppleva personalens bemötande som respektlöst och känna sig nonchalerad och förbisedd. Dessa anhörigvårdare bär med sig en mängd föreställningar som till exempel "jag måste ständigt finnas till hands", "min sjuka anhörigas behov kommer i första hand och mina egna behov kommer i andra hand", "jag måste ordna mitt liv kring min anhöriges behov och visa ständig omtänksamhet", "om jag behöver hjälp blir det andra familjemedlemmar eller vänner som kommer att hjälpa mig", " barnen, grannar eller vänner får inte belastas", "barnen måste få leva sina egna liv", "ingen kan ersätta mig", och "ingen kan hjälpa mig i denna situation."

Sådana föreställningar binder fast anhörigvårdaren i en situation som innebär ständigt ökande oro, stress, och börda. Anhörigvårdaren kan till och med känna sig som fången i det egna hemmet men ändå välja att inte anförtro sig åt andra eller själv söka stöd eller hjälp. Anhörigvårdaren sörjer ett förlorat liv, kan känna sig ensam, isolerad, otrygg, oduglig och börja betvivla sin egen kompetens att vårda. Anhörigvårdarens situation präglas också av brist på livsglädje och känslor som skuld och maktlöshet, ökande hopplöshet och konstant ångest. Pressen att själv tillgodose alla den sjukes behov tillsammans med kraven på sig själv att ständigt vara närvarande leder till att anhörigvårdaren aldrig får tillräcklig med sömn och håller på att bli utmattad. Anhörigvårdaren upplever en övermäktig börda och obalans, och är på väg att tappa kontrollen och tippa över i utbrändhet.

Till bilden hör en ökande frustration där anhörigvårdaren har svårt att hålla tillbaka irritation. Nu finns en påtaglig risk att det går över gränsen och kan sluta i övergrepp mot den sjuke familjemedlemmen. Denna ödesdigra nedåtgående spiral kanske känns igen av många. Det är viktigt att erkänna den styrande roll som föreställningarna spelar för upplevelser och hantering av sitt anhörigvårdande. Nästa fråga vi behöver svara på gäller hur stödpersonal i samhället, och vi som står anhörigvårdaren närmast, kan nå fram till de anhörigvårdare som mest behöver hjälp och stöd. Det verkar som att de anhörigvårdare som har störst behov också är de som har minst tro på att hjälp finns. Kunskapsöversiktens resultat pekar på att en bra startpunkt vore att komma underfund med vilka föreställningar som anhörigvårdaren tar med sig in i vårdandesituationen. Oftast är vi inte ens medvetna om våra egna föreställningar eller hur dessa påverkar oss. Ett sätt är att erbjuda anhörigvårdaren och dennes familj att delta i hälsostödjande samtal. En modell för sådana samtal har utvecklats på Linnéuniversitetet i Kalmar som en del av familjefokuserad omvårdnad. Tillsammans med samtalsledare diskuterar familjer sina inneboende styrkor och resurser, föreställningar som antingen kan underlätta eller hindra att hälsan bibehålls, och om att skapa mening i den egna livssituationen.

Ännu viktigare är att samtal utgör ett stöd för att avtäcka hindrande föreställningar och på så sätt förebygga, så att vårdandet inte slutar i övergrepp. Kunskapsöversiktens resultat pekar på ett svar varför en anhörigvårdare kan begå övergrepp mot någon så nära som en familjemedlem. Men länken mellan anhörigvårdandet och övergrepp har än idag ingen fullständig förklaring och fortsatt forskning behövs. Det är extremt viktigt att vi som finns runt omkring känner igen och förstår anhörigvårdarens situation, utan att fördöma men med viljan att bryta anhörigvårdarens isolering, samt kunna erbjuda stöd. Som en mycket klok anhörigstödjare uttryckte det, "Det måste inte vara så märkvärdigt, utan man sätter sig helt enkelt ner och diskuterar tillsammans; varför blev det så här?"

När livet inte följer manus

Dow, Sophie (2018)

Sammanfattning
Att få ett barn med funktionsnedsättning vänder upp och ned på tillvaron. När Sophie Dow får dottern Annie anar hon direkt att något inte är som det ska men det kommer att ta sexton år innan familjen till slut får ett fullödigt svar på gåtan. Under tiden lever familjen ett utmanande, utmattande men alldeles underbart liv tillsammans. Sophie Dows kamp för sin dotters rättigheter leder till grundandet av Mindroom, en organisation som framgångsrikt jobbar för barn och ungdomar med inlärningssvårigheter. När livet inte följer manus är ett inspirerande, personligt detektivdrama, där Sophie Dow med humor, glöd och oväntat stöd från såväl en Hollywoodregissör som brittiska kungahuset söker svar på frågan: Varför är inte alla hjärnor lika mycket värda?

När mammas tankar ändrade färg

Galli Sara (2015)

Max är fundersam. Det är något som blivit annorlunda med hans mamma. Hon är trött, rösten är ledsen och kojan får vara kvar i vardagsrummet i flera veckor. Pappa säger att mamma är sjuk men Max kan inte se något som är fel. Med en annorlunda mamma vill Max inte att kompisarna ska följa med hem. Vad skulle de säga om de såg att hans mamma sov mitt på dagen? Eller hörde den ledsna rösten? I samtal med skolans sjuksköterska får Max förståelse för att det är mammas tankar som blivit mörka och som gör att hon inte mår bra. När mammas tankar ändrade färg skildrar ur barnets perspektiv hur det kan vara när en förälder är deprimerad. Det är den andra boken av Sara Galli och Mats Molid i deras barnboksserie om barn i svåra livssituationer. Den första boken Får hundar korvar i himlen? tilldelades Statens Kulturråds Litteraturstöd.

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

Närstående i den psykiatriska vården: en kvalitativ studie om erfarenheter av närståendes delaktighet.

Sjöblom, L-M. (2010)

The changes in family burden and participation in care of relatives to both voluntarily and compulsorily admitted patients were investigated as part of a longitudinal study of the quality of the mental health services in a Swedish county performed between 1986 and 1997. The relationship between the relative's mental health and family burden, participation in care and need of own support was also investigated. The results showed similar and high levels of burden and a non-sufficient participation in care in both periods investigated despite the ongoing changes in the delivery of psychiatric services and a change in the compulsory legislation in Sweden during the period. More relatives experienced an own need of care and support from the psychiatric services in the 1997 investigation. Relatives who experienced mental health problems of their own more often experienced other forms of burden, experienced less participation in the patient's treatment and also more often had own needs of care and support. It is concluded that interventions in families where relatives experience mental health problems will be useful, since a well-functioning network around the mentally ill person has shown to reduce relapse.

Loss of a twin sibling and subsequent risk of psychiatric disorders

Song, Huan, Fang, Fang, Magnusson, Patrik, Almqvist, Catarina (2019)

Background: Given close genetic and emotional connections between a twin pair, the death of a co-twin sibling may considerably affect the mental health of the surviving twin. However, evidence from population-based cohort studies is currently lacking. Methods: Based on the Swedish health registers, we identified 4528 exposed twins whose twin sibling died between 1973 and 2013. For comparison, 22,640 matched unexposed twins (i.e., had twin sibling but didn't experience such a loss) and 4939 full siblings of these exposed twins were included. Controlling for multiple confounders, we used Cox models to estimate hazard ratios (HRs) with 95% confidence intervals (CIs) of clinical ascertained psychiatric disorders after loss of a co-twin. Results: The median age at a co-twin loss was 59 years. Compared to the unexposed twins, exposed twins were at increased risk of psychiatric disorders (HR = 1.65 [95% CI 1.48–1.83]). The association seemed stronger for loss of a monozygotic twin (HR = 2.02 [95% CI 1.56–2.61]) than loss of a dizygotic twin (HR = 1.46 [95% CI1.27–1.67]), and was evident after loss by natural causes (HR = 1.49 [95% CI 1.32–1.69]). Additionally, such risk was most pronounced during the first year after loss and when loss occurred at young age. The HR was 1.55 (95% CI 1.31–1.82) when compared exposed twins to their full siblings who also exposed to loss of a normal full sibling due to the death of the deceased twin. Conclusions: Losing a co-twin is a strong life stressor indicated by the increased subsequent risks of psychiatric disorders among the surviving twins

Loss of parent in childhood and adult psychiatric disorder: the role of lack of adequate parental care

Harris T., Brown G.W., & Bifulco A. (1986)

The inconclusiveness of the literature on the role of loss of parent in influencing psychiatric disorder in adulthood is well known. A number of reasons involving sampling, location and other methodological features, are given to account for these contradictory findings. A study specially designed to cope with these features is then described and basic results are reported. These indicate that, in a sample of women aged 18-65, loss of mother before the age of 17, either by death or by separation of one year or more, was associated with clinical depression in the year of interview. Loss of father by death was in no way associated with current depression, but separation from father showed a trend which, however, did not reach statistical significance. Control for other possible confounding factors did not change this patterning of results; these were further supported when psychiatric episodes earlier in adulthood were examined. Examination of the caregiving arrangements in childhood suggests that it is 'lack of care', defined in terms of neglect rather than simply hostile parental behaviour, which accounts for the raised rate of depression. Such 'lack of care' is more frequent after loss of mother than after loss of father.

Low level of response to alcohol as a predictor of future alcoholism

Schuckit, MA. (1994)

Abstract
OBJECTIVE:
As part of a search for measurable attributes of an individual that might be related to the risk of alcoholism, the author's group previously compared 227 sons of alcoholics and 227 matched comparison subjects at the age of about 20 years. Forty percent of the men at high risk for alcoholism and less than 10% of the comparison subjects demonstrated a low intensity of response to alcohol challenge. This article reports the results of the follow-up of the first half of this study group almost a decade later.
METHOD:
Of the men who had been tested at about age 20, 223 were about age 30 at this evaluation, which included personal and resource-person interviews, record searches, urine toxicology screens, and blood level markers of drinking.
RESULTS:
A low level of response to alcohol at age 20 was associated with a fourfold greater likelihood of future alcoholism in both the sons of alcoholics and the comparison subjects. Fifty-six percent of the sons of alcoholics with the lesser alcohol response developed alcoholism during the subsequent decade, compared to 14% of the men in this group who had highly sensitive alcohol responses. Neither family history of alcoholism nor response to alcohol predicted any other psychiatric diagnoses over the subsequent decade, and neither was a significant predictor of any other substance use disorder.
CONCLUSIONS:
In a heavy-drinking society, a lower sensitivity to modest doses of alcohol is associated with a significant increase in the risk of future alcoholism, perhaps through increasing the chances that a person will drink more heavily and more often.

LSS – Särskilt personligt stöd

SOU (2004)

Det är angeläget att särskilt personligt stöd blir en flexibel insats som kan kompletteras dels efter individuella behov, dels efter förändrade förutsättningar beroende på teknikutveckling och annan kunskaps- och kompetensutveckling. Det är därför inte rimligt att precisera en heltäckande katalog av åtgärder som skall ingå i insatsen. Utifrån dagens erfarenhet av innehållet i råd och stöd kan dock tre delar utgöra bas i särskilt personligt stöd; Kunskapsstöd, psykosocialt stöd och särskilt kompletterande stöd.

Det är viktigt att det inte utvecklas någon skarp gräns mellan dessa delar eftersom det är en styrka om den samlade kompetensen kan samverka på det sätt som bäst motsvarar individens behov. Detta gränsöverskridande arbetssätt kan även i fortsättningen medföra problem i avgränsningen av insatsen, men en efterfrågan på tydliga riktlinjer och detaljstyrning måste vägas mot de enskildas behov av individuellt anpassade åtgärder.

Förtydligandet av insatsen innebär i huvudförslaget att det inom särskilt personligt stöd skall vara möjligt att komplettera kvalitativt eller kvantitativt med åtgärder som kan betraktas ingå i habilitering och rehabilitering om dessa behov inte tillgodoses på annat sätt. Detta gäller alla de fyra delar som normalt anses ingå i habilitering och rehabilitering - medicinska, psykologiska, sociala och pedagogiska.

Lyssna på barnen

Hillevi Wahl (2014)

Alkoholfrågan är något som berör de flesta och många av oss bär på minnen och erfarenheter som vi kanske aldrig fått sätta ord på. Barns erfarenheter och upplevelser av alkohol har vi samlat i vår bok: Lyssna på barnen

Om föräldrar missbrukar, så leder detta ofta till att en väl bevarad familjehemlighet styr hela familjens liv. Genom föreläsningar och reportage berättar människor om sina egna erfarenheter.

Blå Bandet är en del av ett stort internationellt nätverk som i de flesta länder kallas Blå Korset. Våra systerorganisationer i Norge och Danmark, arbetar förutom med förebyggande arbete, också med vård och rehabilitering av missbrukare och deras familjer.

Låt stå! Barn med funktionshinder

Winnberg-Lindqvist, Pia, Holm, Sara & Edlund, Nils H. (1999)

Att kunna stå upprätt är av största betydelse för ett barns utveckling. I boken beskrivs lättbegripligt olika metoder och hjälpmedel för att ett barn med funktionshinder lättare ska kunna stå. Boken vänder sig till föräldrar, lärare, assistenter och andra som finns runt barnet i vardagen. Till boken finns en film med samma titel.

Lära genom upplevelser: ute

Eriksson, Eva, Furå, Pär & Pettersson, Ingegerd (2007)

Författarna till denna bok är specialpedagoger och har arbetat i många år med elever i olika åldrar och utvecklingsfaser. Boken är tänkt som en inspirationskälla för lärande i utomhusmiljö.

Lära tillsammans - samarbetsorienterat lärande för ökad delaktighet

Hammar L. (2013)

De positiva effekter som fysisk aktivitet har på
hälsa och självkänsla är idag allmänt kända. Att
vara delaktig i lek och fysiska aktiviteter har också
en viktig social betydelse för barns och ungdomars
utveckling.
Forskning visar att elever som är delaktiga i
fysiska aktiviteter i högre utsträckning utvecklar
sociala relationer och stärker sitt självförtroende,
vilket även påverkar självkänslan och självbilden
positivt. (Moser och Dudas, 1997)
Denna skrift är framtagen efter att vi i Specialpedagogiska
skolmyndigheten tillsammans med
forskare gjort en studie kring samarbetsorienterat
lärande och vägledande kamrater. Vi vet att många
elever med någon funktionsnedsättning upplever
att de inte alltid får förutsättningar att vara delaktiga
i olika aktiviteter eller i gemenskapen under
skoldagen. Särskilt tydligt har det visat sig i ämnet
idrott och hälsa.
Skolinspektionens ämnesrapport för idrott och
hälsa (2012) lyfter fram att det sällan finns tillgång
till specialpedagogiskt stöd i ämnet. Rapporten
pekar också på att idrottslärare ofta är bra på att
uppmuntra eleven men inte på att anpassa undervisningen
eller aktiviteterna. I rapporten framkommer
även att elever med funktionsnedsättning ofta inte
deltar fullt ut i undervisningen.
Med denna bakgrund ville vi titta närmare på
om man kan påverka delaktigheten mellan elever
med och utan funktionsnedsättning på idrottslektionerna.
Vi var även intresserade av att se om
det påverkade klassklimatet och engagemanget
i aktiviteterna.
Det kommer allt mer forskningsresultat som
visar positiva effekter av elevers kompetens att
samarbeta och hjälpa varandra. I vår och liknande
studier kan vi se att samarbetsorienterat lärande,
tillsammans med pedagogers medvetna förhållningssätt,
kan ge goda möjligheter att påverka
klassklimat och gemenskap. Vi vill därför dela med
oss av våra lärdomar från denna och liknade studier.
I denna skrift ger vi främst exempel från ämnet
idrott och hälsa, men vi ser också att dessa lärdomar
är överförbara på andra ämnen och områden
i skolans verksamhet.
Vi vill även lyfta fram begrepp och synsätt som
vi tror att många skolor kan ha nytta av i sitt arbete
kring att skapa en tillgänglig och inkluderande miljö.
Under hösten 2013 kommer studien att publiceras
som en vetenskaplig artikel i European Journal of
Special Needs Education. Artikeln heter Cooperative
oriented Learning in Inclusive Physical Education.
Författare till artikeln är Aija Klavina, Associate Professor
vid Academy of Sport Education i Lettland,
Kajsa Jerlinder, universitetslektor vid högskolan i
Gävle, Lars Kristén, universitetslektor vid högskolan
i Halmstad, Lena Hammar, rådgivare vid Specialpedagogiska
skolmyndigheten och Tine Soulie,
konsulent vid Handikappidrottens Videncenter
i Danmark.

Lönsamt arbete – familjeansvarets fördelning och konsekvenser

Szebehely, M. (2014)

Den här antologin sammanfattar kunskapsläget och bidrar med ny kunskap om arbetsfördelningen mellan kvinnor och män och de konsekvenser som denna får för deras möjligheter på arbetsmarknaden.

-------------------------------------------------

För femtio år sedan rådde huvudsakligen en mycket strikt arbetsdelning mellan makar. Den rådande normen var att mannen genom förvärvsarbete bar huvudansvaret för den ekonomiska försörjningen av familjen. Om det var ekonomiskt möjligt var hustruns huvudsakliga ansvar att ta hand om hem och barn. I början av sextiotalet var således en majoritet av de gifta kvinnorna hemarbetande och skötte i det närmaste allt hushållsarbete.

Mycket har hänt sedan dess och i dag är det mycket få kvinnor i Sverige som arbetar hemma på heltid. Den normförskjutning som skett har naturligtvis påverkat både män och kvinnor, även om omvälvningen onekligen varit störst för kvinnorna.

I dag utgör de hälften av förvärvsarbetskraften och fördelningen av omsorgs- och hushållsarbetet i familjen är väsentligt mycket jämnare än den var för femtio år sedan. Samtidigt kvarstår betydande könsskillnader exempelvis i arbetstid och lön vilka i sin tur är relaterade till kvarvarande könsskillnader i fördelningen av omsorgs- och hushållsarbete.

Major Depression and Family Life – The family´s way of living with a long-term illness.

Hedman Ahlström, B. (2009)

The overall aim was to explore the family's experiences of major depression and the meaning of the illness for family life, for the ill person, the partner and the children. This thesis has a life-world perspective and is a qualitative explorative study using narrative interviews with families with parents who were identified as having major depression MD (Paper I-IV). A case study with a single family (n=3) was performed with a focus on describing what happens and how to manage the illness in a family (I). Group interviews with 7 families (n=18) were conducted to describe the ways of living with MD in families (II). Further, parents (n=8), who were identified as suffering from major depression, representing 8 families were interviewed to elucidate the meaning of depression in family life from the viewpoint of the ill parent (III). Interviews were also conducted with children and young adults (n=8), aged from 6 to 26 years, representing 6 families to elucidate the meaning of a parent's major depression in family life from the children's perspective (IV). The interview texts were analysed using qualitative methods; thematic content analysis (I-II) and phenomenological hermeneutic analysis (III-IV). The thesis shows that family members had different views and ways of interpreting and managing the family's situation when the mother was suffering from major depression (I).The families faced demanding conditions in the presence of illness which they tried to manage together. The families' situation (fatigue, loss of energy and being burdened with guilt) seemed to bring these families into stressful life situations (II). Depressed parents' suffering and dignity were revealed as being simultaneously present and complicating family life. Dignity has to be repeatedly restored for oneself and the family, and the family's dignity has to be restored in front of other outside the family circle (III). Children's sense of responsibility and loneliness were elucidated. The children's responsibility includes their striving for reciprocity, and in their loneliness is the children's yearning for reciprocity. Children compensate with a sense of responsibility for an ill parent in family life and for their lack of health. Children's family life shifts between responsibility and loneliness as they wait for reciprocity in family life to return to normal (IV). This thesis shows how a study using qualitative methods makes it possible for family members together and individually to talk about major depression as illness that is an intruder in their family life. The thesis elucidates how the depression complicates and involves the family member's life as well as the ill person's family life. All family members have their own life-world and try to balance everyday life from an individual perspective, which overshadows that managing the illness is a concern for the whole family.

Major life areas: Play and education

Adolfsson M, Simeonsson RJ, Lee AM, Ellingsen KM (2012)

Measures for children with developmental disabilities: an ICF-CY approach. Annette Majnemer, ed. Mac Keith Press, 2012. 150.00 [pound sterling]. 552pp. ISBN: 978-1-908316-45-5 I highly recommend this book: Professor Majnemer has brought together a wide range of outcome measurement experts creating a thoughtfully crafted book, essential reading for anyone selecting outcome measures for use with children and youth with developmental disabilities. The book is framed by the components.

Mammor med ADHD – Upplevelser av föräldragupp på barnhälsovårdscentral samt av en anpassad självhjälpsgrupp

Högberg, M., & Slivo, T. (2016)

Syftet med denna kvalitativa studie var att undersöka upplevelser av gruppbaserat föräldrastöd hos mammor med Adhd som deltagit i en universell föräldragrupp på barnhälsovårdscentral (BVC) samt i en anpassad självhjälpsgrupp (Mammagruppen). Mammagruppen bestod av fem mammor med diagnosen Adhd, en hade även Asperger syndrom. Med ett bortfall deltog fyra av dem i studien. Tre av informanterna deltog även i föräldragrupp på BVC. Deras barn var 0-2 år gamla utan uttalade problem. Datainsamling skedde genom semistrukturerade intervjuer och en induktiv tematisk analys resulterade i två huvudteman; Samhörighet och Stöd. Resultatet visar att informanternas upplevelser av Mammagruppen blev övervägande positiva och upplevelser av föräldragruppen på BVC blev övervägande negativa. Några grundläggande faktorer som bidrog till detta var huruvida de har upplevt samhörighet i grupperna samt om de har fått utrymme till att samtala om sina egna behov och känslor. Detta bidrar med unik kunskap och belyser det upplevda behovet av ett anpassat stöd. Det behövs vidare forskning innan vi kan säga att det finns skillnader.

Mammor med intellektuell funktionsnedsättning och deras barn : att se, förstå och bemöta dem utifrån psykologisk teori.

Andersson Kristina (2019)

Huruvida föräldrar med intellektuell funktionsnedsättning (psykisk utvecklingsstörning) klarar av sitt föräldraskap har alltid ifrågasatts. Den här boken vill visa på vikten av relationen mellan föräldrar och barn när man ska ge hjälp och stöd till föräldrar med kognitiva brister. Forskning rörande barn och barns utveckling har länge varit ett viktigt område inom psykologin. Man är dock inte alltid överens om föräldrars betydelse för barns psykiska utveckling. Författarna visar hur psykologiska insatser kan utformas i familjer med komplex problematik inklusive föräldrar med intellektuell funktionsnedsättning. Boken kan utgöra en referensram för att underlätta samarbetet mellan personal inom pedagogisk, social, psykologisk och medicinsk verksamhet. Boken bör med fördel även kunna användas inom utbildningar för behandlingspersonal inom psykolog- och socionomutbildningar

Man måste alltid slåss på byråkraternas planhalva

Paulsson, Karin & Fasth, Åsa (1999)

Riksförbundet för rörelsehindrade barn och ungdomar (RBU) vill med den här rapporten bidra till en bättre förståelse för familjer som har rörelsehindrade barn. Syftet är dels att familjer i liknande situationer skall få en insikt om att de inte är ensamma och dels att påverka politiker, tjänstemän samt vårdpersonal

Manual for the ASEBA Adult Forms and Profiles

Achenbach TM, Rescorla LA (2003)

Manual explains the development, standardization, applications, and profiles for the ASEBA adult forms. Also provides reliability and validity data, problem prevalence rates, scale scores, scoring instruments, and answers to common questions. 232 pages.

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.

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.

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.

Närståendes upplevelser på ett vård- och omsorgsboende En kvalitativ intervjustudie

Johanna Eriksson, Annika Strömblad, Magdalena Andersson, Ingela Beck (2018)

Abstrakt Det blir allt fler äldre personer i samhället idag eftersom vi lever längre. Ett större antal äldre personer kan innebära att fler närstående blir involverade i den äldre personens livssituation och vård. Den personcentrerade omvårdnadsmodellen visar att närstående är en viktig resurs för den äldre och för den äldres välbefinnande. Idag ska närstående kunna vara ett naturligt inslag i vården av den äldre personen. Sedan år 2009 när nya bestämmelsen i Socialtjänstlagen kom, har vården ett ansvar att ge närstående stöd och vägledning. Detta leder till att en dialog mellan vårdpersonal och närstående är betydande för att främja den äldres hälsa, men också för att främja närståendes delaktighet och välbefinnande. Syftet med studien var att undersöka närståendes upplevelser av att ha en äldre person vid ett vård- och omsorgsboende. Studien har en kvalitativ studiedesign. Tre fokusgruppsintervjuer och två enskilda intervjuer genomfördes med sammanlagt 26 närstående till en äldre person på ett vård- och omsorgsboende. Intervjuerna analyserades med en konventionell innehållsanalys. Ett gott bemötande och en öppen kommunikation med vårdpersonalen gjorde att de närstående kände sig välkomna och sedda som en viktig del i vården. Närstående upplevde trygghet då de själva och den äldre personen kände sig hemmastadda på vård- och omsorgsboendet. Slutsats: Personalen har en betydelsefull roll för närståendes välbefinnande och delaktighet i vården på ett vård- och omsorgsboende.

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.

Occupational hearing loss, coping and family life

Hallberg, Lillemor (1996)

Too many individuals still unnecessarily develop noise-induced hearing loss (NIHL). Interviews with men with NIHL showed their lack of awareness of noise as a threat to hearing. Also, most men were unwilling to acknowledge, or even denied, their hearing problems. Interviews with spouses of men with NIHL showed that the husband's hearing loss often caused misunderstandings and irritation within the family, which had a negative impact on the couple's intimate relationship. The purposes of our group rehabilitation programme, designed for men with NIHL and their spouses, were to give psychosocial support, adequate information and practice in effective coping strategies. A professional approach to treat men with NIHL is to take a patient-centered global perspective, which encourages the patient to identify, describe and acknowledge problems related to his impaired hearing. In the next step, the patient needs professional help to solve experienced hearing related problems. In this process of identification of and solution to problems, family involvement is important and vital.

Och den ljusnande framtid är vår. – Några ungdomars bild av sin tid vid riksgymnasium

Lang, Lena (2004)

Den tid vi i dagens samhälle betraktar som ungdomstid blir allt längre. De ungdomar som lämnar grundskolan tillhör en åldersgrupp som är större än på länge och det stora flertalet av dem är på väg in i svensk treårig gymnasieutbildning.
En övergripande specialpedagogisk idé handlar om att alla människor bereds möjlighet att ta del i ett samhälle. Samtidigt finns inte någon fullödig bild av vad en sådan idé innefattar, särskilt inte sett utifrån den enskilda människans synvinkel. Forskningsinsatser med specialpedagogisk relevans domineras av individuella perspektiv och perspektiv med intresse för samspel är begränsade. Vidare är intresset för gymnasieskolan som specialpedagogiskt forskningsområde begränsat. Befintlig kunskapsutveckling förankras i högre grad vid omvärldens syn på ungdomar, än i ungdomars syn på omvärlden.

Denna undersökning utgår från några av dem som ofta outsagt åsyftas då "en skola för alla" diskuteras. Undersökningen baseras odelat på ungdomars bild, med en särskild tonvikt lagd vid deras upplevelse av omgivningen inklusive skolan och på samspelet med och inom den.

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 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.

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 people - recipients but also providers of informal care: an analysis among community samples in the Republic of Ireland and Northern Ireland

McGee, H. (2008)

Data on both the provision and receipt of informal care among populations of older adults are limited. Patterns of both informal care provided and received by older adults in the Republic of Ireland (RoI) and Northern Ireland (NI) were evaluated. A cross-sectional community-based population survey was conducted. Randomly selected older people (aged 65+, n = 2033, mean age (standard deviation): 74.1 years (6.8), 43% men, 68% response rate) provided information on the provision and receipt of care, its location, and the person(s) who provided the care. Twelve per cent of the sample (251/2033) identified themselves as informal caregivers (8% RoI and 17% NI). Caregivers were more likely to be women, married, have less education and have less functional impairment. Forty-nine per cent (1033/2033, 49% RoI and 48% NI) reported receiving some form of care in the past year. Care recipients were more likely to be older, married, have more functional impairment, and poorer self-rated health. Receiving regular informal care (help at least once a week) from a non-resident relative was the most common form of help received [28% overall (578/2033); 27% RoI and 30% NI]. Five per cent (n = 102/2033) of the sample reported both providing and receiving informal care. Levels of informal care provided by community-dwelling older adults were notably higher than reported in single-item national census questions. The balance of formal and informal health and social care will become increasingly important as populations age. It is essential, therefore, to evaluate factors facilitating or impeding informal care delivery.

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.

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.

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)

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.

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.

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’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.

Me-ness and we-ness in a modified everyday life close to death at home [Elektronisk resurs].

Carlander, I. (2011)

The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person's need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers' self-image were connected to intimacy, decreasing personal space and experiences such as "forbidden thoughts". The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

Mental disorders and cause-specific mortality

Joukamaa, M., Heliovaara, M., Knekt, P., Aromaa, A., Raitasalo, R., & Lehtinen, V. (2001)

Background The impact of clinically diagnosed mental disorders on mortality in the general population has not been established.

Aims To examine mental disorders for their prediction of cause-specific mortality.

Method Mental disorders were determined using the 36-item version of the General Health Questionnaire and the Present State Examination in a nationally representative sample of 8000 adult Finns.

Results During the 17-year follow-up period 1597 deaths occurred. The presence of a mental disorder detected at baseline was associated with an elevated mortality rate. The relative risk in men was 1.6(95% confidence interval 1.3-1.8) and in women, 1.4 (95% Cl 1.2-1.6). In men and women with schizophrenia the relative risks of death during the follow-up period were 3.3 (95% Cl 2.3-4.9) and 2.3 (95% Cl 1.3-3.8) respectively, compared with the rest of the sample. In both men and women with schizophrenia the risk of dying of respiratory disease was increased, but the risk of dying of cardiovascular disease was increased only in men with neurotic depression.

Conclusions Schizophrenia and depression are associated with an elevated risk of natural and unnatural deaths.

Mental health and creating safety: the participation of relatives in psychiatric treatment and its significance

Piippo, J. and J. Aaltonen (2008)

Aims and objectives. We aimed to discover the significance of the participation of relatives in the treatment process using the principles of the Need-Adapted Approach. The study is based on joint interviews with 10 psychiatric patients, their relatives and a multiprofessional treatment team. Background. The Need-Adapted Approach was developed in Finland for difficult psychiatric problems in public sector psychiatry. The central feature of the approach is the active participation of patients and their relatives in planning the treatment and in the treatment process. It emphasises horizontal expertise and open discussions between the patient, relatives and professionals. Design. A qualitative method based on the grounded theory approach was used. Method. The main focus in the analysis was on how the informants experienced the significance of the participation of their relatives in the treatment process. Results. Seven categories and one core category were identified. Primary categories which increased safety were: (1) shared understanding, (2) a new kind of relationship opens up and (3) being able to cope with life. Secondary categories were: (4) exclusion and (5) need for a one-to-one relationship. Ambivalent categories were: (6) whom or what one can believe and (7) keeping the illness secret. One core category, safety, was identified among the categories. A theoretical model was created for clinical purposes. Conclusions. When practiced correctly, the Need-Adapted Approach makes it possible to create circumstances in psychiatric treatment where the patient and his/her relatives can experience increased safety in spite of the anxiety connected to the psychiatric difficulties. Relevance to clinical practice. Clinical workers and nursing personnel can use our findings in their practical work with psychiatric patients and their relatives. Our findings support further theoretical considerations concerning safety and can be used as guidelines for nursing personnel in their work

Mental health and reactions to caregiving among next of kin of older people (65+) with multi-morbidity discharged home after hospitalization

Behm L., Björkman E., Ahlström G. (2018)

Abstract
BACKGROUND: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress. AIM: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving. METHODS:
This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kincharacteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed. RESULTS: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem. CONCLUSIONS: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.

Mental health professional support in families with a member suffering from severe mental illness: a grounded theory model

Gavois, Helena, Paulsson, Gun, & Fridlund, Bengt (2006)

The aim of this study was to develop a model of mental health professional (MHP) support based on the needs of families with a member suffering from severe mental illness (SMI). Twelve family members were interviewed with the focus on their needs of support by MHP, then the interviews were analyzed according to the grounded theory method. The generated model of MHP support had two core categories: the family members' process from crisis to recovery and their interaction with the MHP about mental health/illness and daily living of the person with SMI. Interaction based on ongoing contact between MHP and family members influenced the family members' process from crisis towards recovery. Four MHP strategies--being present, listening, sharing and empowering--met the family members' needs of support in the different stages of the crisis. Being present includes early contact, early information and protection by MHP at onset of illness or relapse. Listening includes assessing burden, maintaining contact and confirmation in daily living for the person with SMI. Sharing between MHP and family members includes co-ordination, open communication and security in daily living for the person with SMI. Finally, the MHP strategy empowering includes creating a context, counselling and encouraging development for the family members. The present model has a holistic approach and can be used as an overall guide for MHP support in clinical care of families of persons with SMI. For future studies, it is important to study the interaction of the family with SMI and the connection between hope, coping and empowerment.

Mervärde för alla föräldrar genom samlokalisering?

Abrahamsson, Agneta & Bing, Vibeke (2011)

Barnens hälsa påverkas redan tidigt i livet av föräldrarnas livsvillkor. Låg social status, brist på vänner och stress tidigt i livet leder till hälsoskillnader. Familjecentraler med en öppen förskola och förebyggande socialt arbete är en tidig insats och en lågriskstrategi som riktar sig till alla. Den har goda förutsättningar för att stärka föräldrarnas tillit och gemenskap med andra och kan bidra till att minska hälsoskillnader genom att främja barnens hälsoutveckling. Syftena med utvärderingen av de 16 familjecentralerna var att undersöka i vilken mån besökarna är representativa för befolkningen i upptagningsområdet och av vilka anledningar föräldrarna besöker öppna förskolan på familjecentralen. Jämförelse mellan befintlig befolkningsdata i upptagningsområdena och föräldrabesökares bakgrundsdata visar att familjecentralen i huvudsak når en representativ del av befolkningen. Föräldrar använder sig av familjecentralen för att få råd, utbyte av erfarenheter, barnens skull och att umgås med andra. I synnerhet för invandrare har familjecentralen stor betydelse för att komma in i det svenska samhället.

Meta-analysis of the effectiveness of individual intervention in the controlled multisensory environment (Snoezelen®) for individuals with intellectual disability

Lotan, M., & Gold, C. (2009)

BACKGROUND:
The Snoezelen is a multisensory intervention approach that has been implemented with various populations. Due to an almost complete absence of rigorous research in this field, the confirmation of this approach as an effective therapeutic intervention is warranted.
METHOD:
To evaluate the therapeutic influence of the Snoezelen approach. Twenty-eight relevant articles relating to individual (one-to-one) Snoezelen intervention with individuals with intellectual and developmental disabilities (IDD) were reviewed. A meta-analysis regarding the significance of the reduction of maladaptive behaviour and the enhancement of adaptive behaviour was implemented. An analysis of standardised mean differences was used through the use of fixed effect models.
RESULTS:
The primary finding was that the Snoezelen approach, when applied as an individual intervention for individuals with IDD, enabled significant and large effect size in adaptive behaviours, with generalisation to the participants' daily life.
CONCLUSIONS:
Weaknesses in the examined research methodologies, the heterogeneity between research designs, the small number of available research projects, and the small number of participants in each research project, prevent a confirmation of this method as a valid therapeutic intervention at this time.

Methodological issues in assessing psychological adjustment in child witnesses of intimate partner violence

Clements, C. M., Oxtoby, C., & Ogle, R. L. (2008)

This review summarizes a growing number of methodological concerns emerging from research on child witnesses of intimate partner violence (IPV). A brief summary of various psychological, biological, and cognitive impairments associated with witnessing IPV is presented. Directions for future research in this area are explored with particular attention paid to experimental design. Advantages and disadvantages of retrospective, cross-sectional, and longitudinal designs are evaluated. Suggested improvements include the use of multiple informants, behavioral observations, and prospective, longitudinal assessment.

Migration och Folkhälsa. Kapitel 9 i ”Folkhälsorapport”.

Hjern A. (2009)

I en alltmer globaliserad värld får
fler möjlighet att bosätta sig i ett annat land
än det de föddes i. Som ett resultat av detta ökar andelen utlandsfödda i de flesta höginkomstländer, så även i Sverige. Den 31 december år 2006 hade 17
procent av den svenska befolkningen utländsk bakgrund, dvs. var antingen
född i något annat land än Sverige (13 procent) eller hade två utlandsfödda
föräldrar (4 procent). Av dessa var 52 000 utlandsadopterade. Därtill kommer
asylsökande och andra migranter som saknar uppehållstillstånd, som inte finns med i befolkningsstatistiken.
Många utlandsfödda har
flyttat från länder där risken att smittas av vissa
svåra och långvariga infektioner är betydligt större än i Sverige. De viktigaste
av dessa smittämnen är hepatit B och C, tuberkulos och hiv.
Migranterna tar med sig sin livsstil till det nya landet, t ex kost- , tobaksoch
alkoholvanor. Mötet med det nya landets kultur leder till att livsstilen
förändras, men lång tid efter invandringen kan in
flytande av ursprungslandets
livsstil ofta spåras i invandrares sjukdomsmönster. Så har t.ex. män med
ursprung i Medelhavsområdet en högre risk att drabbas av tobaksrelaterad
sjuklighet, som lungcancer jämfört med genomsnittsbefolkningen i Sverige,
men samtidigt har de en lägre risk att drabbas av alkoholrelaterad sjuklighet,
som levercirrhos.
Många betydande folkhälsoproblem orsakas av miljöfaktorer i samspel med
en medfödd sårbarhet, t.ex. allergiska sjukdomar och diabetes. Förekomsten
av de genetiska faktorer som orsakar denna sårbarhet skiljer sig mellan olika
befolkningar i världen och fortsätter att påverka risken för dessa sjukdomar
hos migranter även i det nya landet .
Flyktingen har ett annat utgångsläge än den som
flyttar till ett annat land
för att arbeta eller för att bilda familj. Personer som
flyr från sitt hemland har
nästan alltid levt en tid under stor stress innan de
flyr. Själva
flykten är ofta
omgärdad av umbäranden och hot, och många familjer splittras under långa
perioder. Efter ankomsten till det nya landet väntar en tid av ovisshet under
asylprocessen innan det nya livet kan ta sin början. Detta leder sammantaget
till att psykisk ohälsa är ett större problem hos nyanlända
flyktingar än hos
andra grupper av migranter,

Min mamma rullstolshjälten

Ida Berner (2018)

"Jag vill ha en annan mamma, en som kan springa ..."

Kerstins fotbollslag ska spela match mot föräldrarna. Kerstins pappa, som brukar vara bäst på plan, kan inte vara med så mamma ska med i stället. Men mamma sitter ju i rullstol, hon kan ju inte spela.

Mamma kommer till matchen och rycker dessutom in som värsta hjälten.

Det här är en berättelse om att ha en förälder som inte är som alla andra, men som kan vara världsbäst ändå!

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.

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.

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.

Operation slutstirrat

Anna Pella (2018)

Funkisfamiljen är en ny barnboksserie för barn 6-9 år om hur det är att växa upp med ett syskon som har en funktionsnedsättning. Den handlar om huvudpersonen Vide, 8 år, samt syskonen Tintin, 5 år, och Mio, 10 år. Mio har en medfödd hjärnskada och kan inte gå eller tala.

Seriens första bok, Operation slutstirrat, handlar om bemötande och hur det känns när ett barn på skolgården undrar om Mio är en riktig människa. Hur ska Vide göra med alla som frågar, undrar eller stirrar på Mio? Samtidigt som det är pinsamt blir Vide väldigt arg när det händer och det händer ofta. Tillsammans med sin nya klasskompis och sina syskon försöker Vide komma på sätt att handskas med situationer som uppstår.

Boken är skriven av journalisten Anna Pella som har sin egen familj som förlaga till böckerna. Anna Pellas första bok När du ler stannar tiden är en dagbok till hennes dotter Agnes som föddes med en svår hjärnskada. Den har uppmärksammats i flera stora medier, bland annat i Svt:s program "När livet vänder".

Anna Forsmark som illustrerat boken använder humor, värme och mycket detaljer i sina illustrationer. Hon har tidigare illustrerat boken Lilla nej-boken och Lek istället för bråk: 64 lekar för att förenkla vardagen med barn.

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)

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.

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.

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.

Outcome studies of family therapy in child and adolescent depression

Cottrell D. (2003)

There is surprisingly little good-quality evidence for the effectiveness of family systemic interventions with child and adolescent depression given the prevalence of depression and the demonstrated association with a range of family factors. What studies there are suggest the possibility of family therapy being an effective intervention but more research is needed before firm conclusions may be drawn. Family interventions may be more effective in children than in adolescents and where other family members are depressed. It is possible that family interventions continue to bring about improvement in symptoms after cessation of treatment. What research there is evaluates older structural models of therapy: there is a real need for more evaluation of newer models of practice.

Outcomes of an educational intervention for the family of a person with bipolar disorder: a 2-year follow-up study

Jönsson, P., Wijk, H., Danielsson, E., & Skärsäter, I. (2011)

This study aimed to analyse the outcomes of an educational intervention for family members living with a person with bipolar disorder. A longitudinal study was conducted comprising a 10-session educational intervention designed for families with members in outpatient mental health care. Thirty-four family members agreed to participate. Data were collected on five occasions, at baseline and during a 2-year follow-up through self-assessment instruments: the Carers of Older People in Europe Index, the Jalowiec Coping Scale-40, the Sense of Coherence questionnaire and the Social Adaptation Self-evaluation Scale. The results showed that the condition had a considerable negative impact on the family members as carers, but the educational intervention increased their understanding, which facilitated the management of their lives. A significant improvement in stress management was seen over time and social functioning was retained. The study showed that families living with one member with bipolar disorder benefited from the educational intervention in terms of increasing understanding of the condition and reducing stress. Mental health care needs to develop educational interventions further and offer the families support to strengthen their ability to manage with the situation.

Out-of-school time activity participation profiles of children with physical disabilities: a cluster analysis

King G, Petrenchik T, DeWit D, McDougall J, Hurley P, Law M. (2010)

OBJECTIVE:
To determine out-of-school activity participation profiles of school-aged children with physical disabilities.
METHODS:
Activity participation profiles were determined by cluster analysing 427 children's responses on multiple dimensions of participation (intensity, location, companionship, enjoyment, preference) in five activity types (recreational, active physical, social, skill-based, self-improvement). Socio-demographic, child, parent, family and environmental predictors of group membership were determined, along with child functioning, socio-demographic, self-concept and social support variables significantly associated with group membership.
RESULTS:
The cluster analysis revealed four groups, labelled Social Participators (a highly social and neighbourhood-focused group), Broad Participators (a group of high participators who enjoy participation), Low Participators (a group with low enjoyment and weak preferences) and Recreational Participators (a group of younger children who participate in recreational activities with family members). The groups showed meaningful differences across a range of socio-demographic, child, parent, family and environmental variables.
CONCLUSIONS:
The findings support an affective and contextual view of participation, indicating the importance of motivational theory and a person-environment approach in understanding the complexity of children's out-of-school activity participation.

Overstretched: European families up against the demands of work and care

Kröger T, Sipilä J, (eds). (2005)

Overstretched provides fresh perspectives on the reality of European family life where care and paid work need to be woven together on a daily basis, offering an opportunity to discuss and evaluate care policies in a new light.
A collection of essays providing new perspectives on the reality of European family life where care and paid work need to be woven together on a daily basis.
Focuses on families who live under strained conditions, such as lone parent families, immigrant families, and families who care simultaneously for both their children and an elderly family member.
Based on interviews with families from Finland, France, Italy, Portugal and the UK.
Develops methods for doing comparative qualitative analysis in practice.
Offers new insights into the problems of gender balance in caring, and the significance of cultural notions and working hours.
Offers an opportunity to discuss and evaluate care policies in a new light.

Overview of fetal alcohol spectrum disorders for mental health professionals

Clarke ME, Gibbard WB. (2003)

Fetal Alcohol Spectrum Disorders (FASD), including Fetal Alcohol Syndrome (FAS) and related disorders such as Alcohol Related Neurodevelopmental Disorder (ARND) are the most common form of developmental disability and birth defects in the western world. Early recognition and accurate diagnosis by mental health professionals remains a key issue. This article reviews history, mechanisms of alcohol exposure, epidemiology, diagnosis and management of FASD.

Paired Reading. Ett försök i sju kommuner med lästräning för familjehemsplacerade barn

Tideman, E., Sallnäs, M., Vinnerljung, B., & Forsman, H. (2013)

Sju kommuner genomförde ett försök med Paired
Reading (parläsning) med syfte att förbättra läsförmågan
hos familjehemsplacerade barn. I försöket
utbildades familjehemsföräldrar i en enkel metod
som bygger på läsning med barnen 20 minuter/dag,
tre gånger i veckan under en 16-veckorsperiod. Försöket
utvärderades genom jämförelser av barnens
testade läsfärdigheter före (T1) och efter lästräningen
(T2). I jämförelserna minskades testvärdena vid
T2 med ett estimat av tidseffekten (den förbättring
som förväntas även om barnen inte hade deltagit i
försöket). Dessutom samlade vi in information om
hur läsningen fungerade i familjehemmen. Rapporten
baseras på analyser av 81 barn, huvudsakligen
placerade i långvarig familjehemsvård, som gick i
årskurserna 2-6 (8-12 år).
Två frågor ställdes i utvärderingen:
1. Är det möjligt att genomföra ett program där
familjehemsföräldrar regelbundet och under en längre
sammanhängande tid läser med de placerade barnen?
Ja, det är möjligt. Bortfallet var mycket lågt
(2.4% bland de som påbörjade försöket) och enligt
familjehemmens rapportering läste den stora
majoriteten (90%) minst mellan två och tre gånger/
vecka, det vill säga de hade enligt vår bedömning
genomfört programmet på ett godtagbart sätt.
2. Förbättrar Paired Reading barnens läsförmåga?
Oavsett ålder/årskurs fick barnen vid T2 bättre
resultat på testerna där läsåldern graderades (LäSt
NonOrd och LäSt Ord). Förbättringen motsvarade
i genomsnitt 11 månader. Om man räknar bort
tidseffekten förbättrade barnen sin läsålder med
cirka sju månader ("nettoförbättring"). Barnen
förbättrade också sitt ordförråd markant, mätt med
ett deltest i WISC-IV.
Ytterligare två tester administrerades till de
yngre barnen i åk 2-3; Bokstavskedjor och Ordkedjor.
Även dessa testresultat visade på signifikanta
förbättringar över tid. Det innebär att de yngre barnen
förbättrade sin läsförmåga enligt samtliga fem
tester (WISC-IV Ordförråd, Läst NonOrd, LäSt
Ord, Bokstavskedjor och Ordkedjor).
För de äldre barnen i åk 4-6 användes ytterligare
fem tester utöver LäSt Non Ord/LäSt Ord och
Ordförråd i WISC-IV. Av dessa fem tester visade
ett på en statistisk signifikant förbättring (Teckenkedjor)
och ett visade en tendens till förbättring
(Ordkedjor). Tre visade bara på svaga tendenser till
förbättring (Meningskedjor och läsförståelsetesterna
Draken och Isbjörnen). De äldre barnen hade med
andra ord klara förbättringar på fyra av åtta tester
(WISC- IV Ordförråd, LäSt NonOrd och LäSt
Ord samt Teckenkedjor), en tendens till förbättring
på ett test (Ordkedjor) men bara svaga tendenser
till förbättring på tre tester (Meningskedjor, Draken
och Isbjörnen).
Sammanfattande slutsats
Paired Reading är ett genomförbart lässtödsprogram
för familjehemsplacerade barn. Det har i
denna före-efterstudie visat sig förbättra läsförmå-
gan hos barn i årskurs 2-6.

Palliativ vård vid demens

Sundelöf Johan, Tegman Petra (2019)

Demens är ett obotligt, fortskridande sjukdomstillstånd som förr eller senare leder till döden. Genom ökad kunskap och rätt verktyg hos personalen kan både den som är sjuk och närstående få uppleva bästa möjliga livskvalitet och en värdig tid i livets slutskede. Ytterst handlar det om att teamet samarbetar strukturerat för att skapa förutsättningar för god palliativ vård.

Den här boken utgår från förhållningssättet i palliativ vård vid demens som kan sammanfattas med tre ord. Hjärna för den kunskap som behöver finnas, hjärta för omsorgen och händer för den livsnödvändiga närhet som skapar trygghet, livskvalitet och ro inombords. Boken är förankrad i forskningen och baseras på nationella och europeiska riktlinjer. Varje temakapitel innehåller fallbeskrivningar och frågor för reflektion enskilt eller i grupp.

Målgruppen är sjuksköterskor, läkare och personal som arbetar med personer med demens. Boken kan också användas inom grund- och fördjupningsutbildningar.

Palliative and Supportive Care

Olsson, A., Markhede, I., Strang, S., & Persson, L. I. (2010)

Supportive and palliative care services are integral to the provision of comprehensive cancer care (and no cancer service should call itself 'comprehensive' without a comprehensive supportive and palliative care team). All people diagnosed with cancer should have access to supportive care and the one in two people who will have their lives shortened as a result of cancer need to be able to access palliative care. The skill base, competencies and clinical evidence base for these disciplines is shared. Properly resourced and integrated supportive and palliative care services have been shown to deliver improved health outcomes without compromising life expectancy to:
. people with cancer
. their caregivers (while in the role and subsequently), and
. health services that are prepared to adequately invest in these services, with more efficient use of resources.

In order to achieve these improved health outcomes, early identification of people who have more complex needs becomes a responsibility of each member of the clinical cancer care team. Systematic assessment of current and likely future needs is imperative to improve the patient-defined outcomes that are necessary to live well with cancer or to ensure that life goals are met if premature death will occur because of cancer.

Pappa, vad är schizofreni?

Roger Zetterström (2013)
Den här boken vänder sig till barn och unga som vill lära sig om de vanligaste psykiska sjukdomarna. Boken berättar enkelt och översiktligt hur 12 psykiska sjukdomar yttrar sig och hur de behandlas.
Roger Zetterström, bokens författare, är skötare i psykiatri och socionom, han arbetar som personligt ombud för vuxna med långvarig psykisk ohälsa.

Parent and adolescent responses to non-terminal parental cancer: retrospective multi-case pilot study

Davey, M., Askew, J., och Godette, K. (2003)

This article presents the results of a retrospective multiple-case pilot study (6 families: 4 Caucasian and 2 African American) designed to uncover how parents and their adolescent children (ages 11-18) were affected by non-terminal parental cancer, and how they adjusted to and coped with cancer. Drawing from phenomenology and the collective case study approach, findings suggest that parents were often unaware of the stress and overwhelming feelings of sadness and fear their adolescent children were experiencing. Often the adolescent children tried to protect their parents by not sharing their feelings openly with them; this was particularly so for the oldest offspring in the family. These findings provide important insights for healthcare professionals in serving this often-neglected population of families more effectively.

Parent management training: Evidence, outcomes, and issues

Kazdin, Alan (1997)

OBJECTIVE:
To describe and evaluate parent management training (PMT) as a treatment technique for oppositional, aggressive, and antisocial behavior.
METHOD:
Recent research is reviewed on the efficacy of PMT; factors that contribute to treatment outcome; the range of outcomes related to child, parents, and family; and variations of treatment currently in use. Limitations are also discussed related to the impact of treatment, clinical application, and dissemination of treatment.
RESULTS AND CONCLUSIONS:
PMT is one of the more well-investigated treatment techniques for children and adolescents. Notwithstanding the large number of controlled studies attesting to its efficacy, fundamental questions remain about the magnitude, scope, and durability of impact

Parent stress management training for attention-deficit/hyperactivity disorder

Treacy L, Tripp G, Baird A. (2005)

This study assessed the effectiveness of a targeted 9-week parent stress management program (PSM) on the parenting stress, mood, family functioning, parenting style, locus of control, and perceived social support of parents of children diagnosed with DSM-IV ADHD. Sixty-three parents from 42 families were randomly assigned to 1 of 2 conditions: immediate treatment or wait-list control. Results of the randomized control trial showed that for mothers, completion of the PSM program was accompanied by significant reductions in parent-domain parenting stress together with significant improvements in parenting style (verbosity, laxness, overreactivity). For fathers, completion of the program was associated with a reduction in verbosity only. Anonymously completed consumer satisfaction questionnaires demonstrated a high degree of satisfaction with the PSM program.

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement.

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Parent versus child stress in diverse family types: An ecological approach

Duis SS, Summers M, Summers CR. (1997)

Differences in level of overall stress and the proportion o f child- versus
parent-related stress among several different family types were investigated.
An ecological framework was used to delineate the predictors o f
stress for the different family types. Participants were 2 9 single-parent
families, 3 5 two-parent families, 1 7 families o f children with Down syndrome,
1 6 families of children with hearing impairment, and 2 9 families
of children with developmental delay. Th e results indicate that family
stress and ecological variables predictive o f family stress varied among
these families. Intervention and therapy efforts may be improved by
understanding the locus o f stressors among these family types.

Parental ADHD Symptomology and Ineffective Parenting: The Connecting Link of Home Chaos

Mokrova, I., O’Brien, M., Calkins, S., & Keane, S. (2010)

SYNOPSIS
Objective
This study examines links between maternal and paternal ADHD symptoms and parenting practices that require inhibition of impulses, sustained attention, and consistency; the role of home chaos in these associations is also assessed.

Design
ADHD symptoms, the level of home chaos, and parenting practices (involvement, inconsistent discipline, supportive and non-supportive responses to children's negative emotions, and positive parenting) were assessed through self-reports of 311 mothers and 149 fathers of middle-childhood children. Child ADHD symptoms were assessed by teachers.

Results
Mothers reported higher home chaos when they or their children had higher levels of ADHD symptoms; for fathers, only their own ADHD symptoms predicted higher levels of home chaos. Mothers' ADHD symptoms were positively associated with inconsistent discipline and non-supportive responses to children's negative emotions, and these associations were mediated by home chaos. Higher levels of fathers' ADHD symptoms predicted more inconsistent discipline, low involvement, and a low level of supportive and a high level of non-supportive responses to children's negative emotions. Home chaos moderated the link between paternal ADHD and inconsistent discipline and mediated the link between paternal ADHD and involvement. Overall, positive aspects of parenting, and those that require attention and ability to control one's impulses, may be compromised in fathers with high levels of ADHD symptoms.

Conclusions
Effectiveness of specific parenting practices for both mothers and fathers may be compromised in parents with ADHD symptoms. In certain cases, parental ADHD symptoms translate into ineffective parenting through disorganized homes.

Parental attention-deficit/hyperactivity disorder predicts child and parent outcomes of parental friendship coaching treatment

Griggs, M. S., & Mikami, A. Y. (2011)

Objective

This study investigated the impact of parental ADHD symptoms on the peer relationships and parent-child interaction outcomes of children with ADHD among families completing a randomized-controlled trial of Parental Friendship Coaching (PFC) relative to control families.

Method

Participants were 62 children with ADHD (42 boys; ages 6–10) and their parents. Approximately half of the families received PFC (a 3-month parent training intervention targeting the peer relationships of children with ADHD) and the remainder represented a no-treatment control group.

Results

Parental inattention predicted equivalent declines in children's peer acceptance in both treatment and control families. However, treatment amplified differences between parents with high versus low ADHD symptoms for some outcomes: Control families declined in functioning regardless of parents' symptom levels. However, high parental inattention predicted increased child peer rejection and high parental inattention and impulsivity predicted decreased parental facilitation among treated families (indicating reduced treatment response). Low parental symptoms among treated families were associated with improved functioning in these areas. For other outcomes, treatment attenuated differences between parents with high versus low ADHD symptoms: Among control parents, high parental impulsivity was associated with increasing criticism over time whereas all treated parents evidenced reduced criticism regardless of symptom levels. Follow-up analyses indicated that the parents experiencing poor treatment response are likely those with clinical levels of ADHD symptoms.

Conclusions

Results underscore the need to consider parental ADHD in parent training treatments for children with ADHD.

Keywords: ADHD, parent training, social functioning, parental psychopathology, parent-child relationship

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.

Parental death, shifting family dynamics, and female identity development

Cait, C. (2005)

This article is a report of research that explored how the death of a parent influences a woman's identity development. Qualitative methodology and data analysis procedures based on grounded theory were used for the research. Eighteen women who experienced parental death between age 11 and 17, were recruited by convenience sampling. Shifts in family relationships and roles, in part, influenced who these young women became. Many young women were expected to take on a care-giving role to support the surviving parent and replace the deceased. The transition in the relationship between the adolescent girl and surviving parent was an important theme for identity development. (PsycINFO Database Record (c) 2015 APA, all rights reserved)

Parental psychiatric disorder: Effects on children

Rutter, M., & Quinton, D. (1984)

A 4-year prospective study was undertaken of the families of 137 newly referred English speaking psychiatric patients with children at home aged under 15 years. The group comprised a representative sample of such patients living in one inner London borough. Teacher questionnaires were obtained yearly for all children of school age in the families, and for age-, sex- and classroom-matched controls. Detailed standardized interviews were undertaken yearly with parent-patients and with their spouses. A comparison was also made with a control group of families in the general population with 10-year-old children. Patients' families differed in terms of a higher rate of psychiatric disorder in spouses and a much higher level of family discord. Both parental mental disorder and marital discord tended to persist over the 4-year period, but persistence of both was much more marked when the parent had a personality disorder. The children of psychiatric patients had an increased rate of persistent emotional/behavioural disturbance, which tended to involve disorders of conduct. The psychiatric risk to the children was greatest in the case of personality disorders associated with high levels of exposure to hostile behaviour. Boys showing temperamental risk features were most vulnerable to the ill-effects associated with parental mental disorder.

Parental PTSD, adverse parenting and child attachment in a refugee sample

Van Ee, E., Kleber, R. J., Jongmans, M. J., Mooren, T. T., & Out, D. (2016)

In contrast with traumatic experiences, there is a dearth of studies on the link between trauma symptoms, disconnected (frightened, threatening and dissociative) parenting behavior, extremely insensitive parenting behavior and child attachment. This study extends previous work on the impact of posttraumatic stress disorder (PTSD) on families by studying the unique contribution of disconnected and extremely insensitive parenting behavior on child attachment in a highly traumatized sample of 68 asylum seekers and refugees and their children (18-42 months). The results show that parental symptoms of PTSD are directly related to children's insecure attachment and disorganized attachment. The greatest proportion of the risk could be attributed to factors related to the dyad and not the family. A mediation effect of adverse parenting behavior was not confirmed. On the one hand the results indicate the need for an effective treatment of PTSD symptomatology while on the other hand the results indicate the need for clinical attention to insecure attachment relationships.

Parental PTSD, adverse parenting and child attachment in a refugee sample

Van Ee, E., Kleber, R. J., Jongmans, M. J., Mooren, T. T., & Out, D. (2016)

In contrast with traumatic experiences, there is a dearth of studies on the link between trauma symptoms, disconnected (frightened, threatening and dissociative) parenting behavior, extremely insensitive parenting behavior and child attachment. This study extends previous work on the impact of posttraumatic stress disorder (PTSD) on families by studying the unique contribution of disconnected and extremely insensitive parenting behavior on child attachment in a highly traumatized sample of 68 asylum seekers and refugees and their children (18-42 months). The results show that parental symptoms of PTSD are directly related to children's insecure attachment and disorganized attachment. The greatest proportion of the risk could be attributed to factors related to the dyad and not the family. A mediation effect of adverse parenting behavior was not confirmed. On the one hand the results indicate the need for an effective treatment of PTSD symptomatology while on the other hand the results indicate the need for clinical attention to insecure attachment relationships.

Receipt of Formal and Informal Help with Specific Care Tasks among Older People Living in their Own Home. National Trends over Two Decades

Dahlberg Lena, Berndt Hanna, Lennartsson Carin, Schön Pär (2018)

bstract [en]

Sweden is seen as a typical example of a social democratic welfare regime, with universal and generous welfare policies. However, in the last decades, there have been substantial reductions in the Swedish provision of care for older people. This study aimed to examine trends in sources of care-receipt in older people (77+) living in their own home and with a perceived need for help with two specific tasks: house cleaning and/or food shopping. Trends in care-receipt were examined in relation to gender, living alone, having children and socio-economic position. Data from the 1992, 2002 and 2011 data collection waves of the national study, Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD), were used. Response rates varied between 86 and 95 per cent, and the sample represents the population well. Trends and differences between groups were explored in bivariate and logistic regression analyses. There was a reduction in formal care-receipt regarding house cleaning and food shopping over the study period. It was more common for women than men to receive formal care, and more common for men than women to receive informal care. Reductions in formal care have affected older women more than older men. Still, living alone was the most influential factor in care-receipt, associated with a greater likelihood of formal care-receipt and a lower likelihood of informal care-receipt. It can be concluded that public responsibility for care is becoming more narrowly defined in Sweden, and that more responsibility for care is placed on persons in need of care and their families.

Reciprocity and Social Capital in Sibling Relationships of People With Disabilities

Kramer J, Hall A, Heller T. (2013)

Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the life span. For siblings and people with intellectual and developmental disabilities (IDD), these connections take on an increased significance as their families age and parents can no longer provide care. This article presents findings from a qualitative study that addresses the question, "How do siblings support each other after parents no longer can provide care to the person with IDD?" Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice are discussed.

Reciprocity in relationships and support between grandparents and grandchildren: An Icelandic example

Sigurdadottir, S. H. and S. Juliusdottir (2013)

This study explores and discusses the relationships between grandchildren and grandparents with an emphasis on the reciprocal, practical, emotional, and financial support that is provided between generations. Two independent surveys were conducted in Iceland, one of grandparents aged 65 years and older (n = 206) and one of grandchildren among college students (n = 648). The questions used were the same. The results indicated that there is a certain consistency in the pattern of views of the younger toward the older generation and the other way around. These findings are discussed in relation to family development and the value of intergenerational relationships and support.

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

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.

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.

Reduced ADHD symptoms in adults with ADHD after structured skills training group: Results from a randomized controlled trial

Hirvikoski, T., Waaler, E., Alfredsson, J., Pihlgren, C., Holmström, A., Johnson, A., … Nordström, A.-L. (2011)

OBJECTIVE:
Feasibility, acceptability, and efficacy of a Dialectical Behavioral Therapy (DBT) -based method developed in Germany were evaluated in a Swedish outpatient psychiatric context.

METHOD:
Fifty-one adults with ADHD on stable medical treatment or on no medication were randomized to the DBT-based skills training (n=26) or a parallel loosely structured discussion group (n=25). Self-rating scales were administered before randomization and after the treatment.

RESULTS:
Feasibility and participant satisfaction were good in both groups while skills training was perceived as more logical and effective for ADHD-related problems. The analyses of the individuals who completed the treatment and remained stable with regard to medication (n=19 in skills training; n=18 in control group) showed a significant reduction in ADHD symptoms in the skills training group, but not in the control group. No reduction of comorbidity was observed in any of the groups.

CONCLUSIONS:
The treatment was feasible in an outpatient psychiatric context, well tolerated, and significantly reduced ADHD symptoms in on-treatment individuals who remained stable regarding medication status.

Reducing Conduct Problems Among Children Brought to Women’s Shelters: Intervention Effects 24 Months Following Termination of Services

McDonald, R., Jouriles, E. N., & Skopp, N. A. (2006)

This study evaluated the long-term effects of Project SUPPORT, an intervention designed to reduce conduct problems among children in domestically violent families. Participating mothers had sought shelter because of domestic violence and had at least one child (4-9 years old) exhibiting clinical levels of conduct problems. Results indicated that at 2 years posttreatment, 15% of children in families in the Project SUPPORT condition exhibited clinical levels of conduct problems compared with 53% of those in the existing services condition. In addition, mothers of children in the Project SUPPORT condition reported their children to be happier, to have better social relationships, and to have lower levels of internalizing problems, relative to children in the comparison condition. Mothers in the Project SUPPORT condition were less likely to use aggressive child management strategies and were less likely to have returned to their partners during the follow-up period.

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.

Reducing depression in stroke survivors and their informal caregivers: A randomized clinical trial of a Web-based intervention

Smith GC, Egbert N, Dellman-Jenkins M, Nanna K, Palmieri PA. (2012)

Purpose/Objectives: To develop and test the efficacy of a Web-based intervention for alleviating depression in male stroke survivors (SSs) and their spousal caregivers (CGs) that blends both peer and professional support. Design and Methods: The research consisted of an intervention protocol evaluated by a focus group of rehabilitation professionals, a "think aloud" session conducted with female stroke CGs, and a usability test of the intervention's online features with 7 female stroke CGs. Efficacy of the final protocol was tested in a 2-group randomized clinical trial with a sample of 32 CG–SS dyads. The CGs in the intervention condition received an online group intervention. Intervention components were based on the Stress Process Model. Those CGs in a control condition received minimal support with individualized access to relevant online information. Measures of depression, as well as the secondary outcomes of mastery, self-esteem, and social support, were obtained from SSs and CGs at pretest, posttest, and 1-month later. Results: At posttest and 1 month later, CGs in the intervention condition reported significantly lower depression than CGs in the control condition with baseline depression controlled. There was no significant effect on depression among SSs. Although no significant treatment effects for either SSs or CGs were found on the secondary outcomes, posttreatment changes on some constructs were significantly correlated with change in depression. Conclusions/Implications: CGs benefit from Web-based programs that help them better understand both their emotional needs and those of the SS. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

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.

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.

Regionala demensriktlinjer- Utredning, vård och omsorg av personer med demenssjukdomar i Blekinge

Blekinge Kompetenscentrum (2011)

I maj 2010 presenterades Socialstyrelsens "Nationella riktlinjer för vård och omsorg vid demenssjukdom". Under hösten 2010 arbetade en tvärprofessionell arbetsgrupp med en anpassning av de Nationella riktlinjerna till Blekingeförhållanden. Detta arbete där Landstinget Blekinge och länets kommuner deltog, resulterade i "Regionala riktlinjer — Utredning, vård och omsorg av personer med demenssjukdom i Blekinge", skrift 2011:6.

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)

Regular article: Reducing potential for child abuse among methadone-maintained parents: Results from a randomized controlled trial.

Dawe S, Harnett P. (2007)

High rates of child abuse and neglect occur in many families in which either or both parents abuse illicit drugs. This study reports on the results of a randomized controlled trial with families having a parent on methadone maintenance (N = 64), in which an intensive, home-based intervention, the Parents Under Pressure (PUP) program, was compared to standard care. A second brief intervention control group of families received a two-session parenting education intervention. The PUP intervention draws from the ecological model of child development by targeting multiple domains of family functioning including the psychological functioning of individuals in the family, parent–child relationships, and social contextual factors. Mindfulness skills were included to address parental affect regulation, a significant problem for this group of parents. At 3- and 6-month follow-up, PUP families showed significant reductions in problems across multiple domains of family functioning, including a reduction in child abuse potential, rigid parenting attitudes, and child behavior problems. Families in the brief intervention group showed a modest reduction in child abuse potential but no other changes in family function. There were no improvements found in the standard care group and some significant worsening was observed. Results are discussed in terms of their implications for improved treatment.

Regular article: Reducing potential for child abuse among methadone-maintained parents: Results from a randomized controlled trial.

Dawe S, Harnett P. (2007)

High rates of child abuse and neglect occur in many families in which either or both parents abuse illicit drugs. This study reports on the results of a randomized controlled trial with families having a parent on methadone maintenance (N = 64), in which an intensive, home-based intervention, the Parents Under Pressure (PUP) program, was compared to standard care. A second brief intervention control group of families received a two-session parenting education intervention. The PUP intervention draws from the ecological model of child development by targeting multiple domains of family functioning including the psychological functioning of individuals in the family, parent–child relationships, and social contextual factors. Mindfulness skills were included to address parental affect regulation, a significant problem for this group of parents. At 3- and 6-month follow-up, PUP families showed significant reductions in problems across multiple domains of family functioning, including a reduction in child abuse potential, rigid parenting attitudes, and child behavior problems. Families in the brief intervention group showed a modest reduction in child abuse potential but no other changes in family function. There were no improvements found in the standard care group and some significant worsening was observed. Results are discussed in terms of their implications for improved treatment.

Relational Psychotherapy Mothers' Group: A randomized clinical trial for substance abusing mothers

Luthar SS, Suchman NE, Altomare M. (2007)

The purpose of this study was to ascertain the effectiveness of the Relational Psychotherapy Mothers' Group (RPMG), a supportive parenting group intervention for substance abusing women. Sixty mothers receiving RPMG were compared to 67 women receiving recovery training (RT); both treatments supplemented treatment in the methadone clinics. At the end of the 6-month treatment period, RPMG mothers showed marginally significant improvement on child maltreatment (self-reported) and cocaine abuse based on urinalyses when compared with RT mothers; notably, children of RPMG mothers reported significantly greater improvement in emotional adjustment and depression than children of RT mothers. At 6 months follow-up, however, treatment gains were no longer apparent. Overall, the findings suggest that whereas supportive parenting interventions for substance abusing women do have some preventive potential, abrupt cessation of the therapeutic program could have deleterious consequences.

Thousands of American children are at risk for negative outcomes because of maternal substance abuse. Estimates are that as many as four million American women regularly use illicit drugs (SAMHSA, Office of Applied Studies, National Survey on Drug Use and Health, 2002/2003); about 80% of these women are likely to be mothers of at least one child (National Center on Addiction and Substance Abuse, 1996). Drug abusing mothers show elevated levels of psychiatric disturbance—particularly depression and anxiety—as well as significant problems with child rearing (Beckwith, Rozga, & Sigman, 2002; Luthar, Cushing, Merikangas, & Rounsaville, 1998; Najavits, Weiss, & Shaw, 1997; Singer et al., 1997). It is not surprising that their children also display several difficulties, with as many as 65% manifesting a psychiatric disorder by the teen years (Luthar et al., 1998).

Although their multiple vulnerabilities indicate that addicted mothers need multifaceted therapeutic interventions, drug treatment programs traditionally have entailed scant attention to their personal and parenting needs (Luthar & Suchman, 2000a). These programs were originally developed for men and then used with women as well, with little consideration of the unique challenges and needs of the latter, particular in terms of their roles as mothers (cf. Hogan, 1998; Millar & Stermac, 2000; Westermeyer & Boedicker, 2000). In the last 2 decades, however, there have been several efforts to develop and test such multi-pronged programs (Camp & Finkelstein, 1997; Catalano, Gainey, Fleming, Haggerty, & Johnson, 1999). In this paper, we focus on one such intervention, which showed promise in early pilot testing (Luthar & Suchman, 2000a), the Relational Psychotherapy Mothers' Group (RPMG), with the goal of assessing effectiveness relative to alternative forms of treatment.

Developed for heroin-addicted mothers with children up to 16 years of age, RPMG is a supportive psychotherapy aimed at facilitating optimal parenting among at-risk mothers, and it is offered over 24 weekly group sessions that supplement standard methadone treatment. Conceptually, the treatment was developed within the scaffolding of the literature on risk and resilience, with (a) consideration of processes operating at multiple levels, related to the individual, family, and community, and (b) a focus on both positive and negative forces among at-risk groups (Luthar & Cicchetti, 2000).

At the individual level, the RPMG intervention is grounded in the view that attention to addicted mothers' personal distress levels is critical to improve their parenting behaviors. At the same time, the treatment entails deliberate attempts to harness mothers' tendencies toward guilt (regret at their past "errors") as catalysts for change toward optimal parenting. Thus, the first half of the 24 sessions in this treatment are directly focused on the women's own functioning, addressing topics such as coping with anger, depression, and the constructive use of guilt.

Vulnerability factors at the familial level span multiple forms of dysfunctional parenting that many of these women experienced as children, ranging from inadequate nurturance to physical or sexual abuse (El-Bassel, Gilbert, Schilling, & Wada, 2000; Harmer, Sanderson, & Mertin, 1999; Hogan, 1998; Najavits et al., 1997). Obviously, these experiences pose risks for their own parenting. Salient among the protective forces conversely, is concern about the well-being of their children along with both the desire and potential to benefit from supportive parenting interventions (Hogan, 1998; Luthar & Suchman, 2000a). Accordingly, the second 12 of the 24 RPMG sessions are focused on specific parenting issues, such as alternatives to physical punishment, age-appropriate limits in discipline, and warmth in parenting.

At the level of the community, a pronounced risk is exposure to stigma (El-Bassel et al., 2000; Eliason & Skinstad, 1995; Hogan, 1998; Luthar et al., 1998; Najavits et al., 1995); in clinical settings, the fallout of such stigmas is wariness of strictly didactic treatment approaches that seem to emphasize addicted women's deficits as parents (Levy & Rutter, 1992). The effort in RPMG, therefore, is to discuss child-rearing issues in the context of nonjudgmental, supportive experiences using insight-oriented therapy. A second community-level risk is dysfunctional social networks: isolation is a serious problem, and close relationships that do exist reflect various difficulties such as domestic violence (Amaro & Hardy-Fanta, 1995; Brunswick & Titus, 1998; El-Bassel et al., 2000; Harmer et al., 1999; Hogan, 1998; Wald, Harvey, & Hibbard, 1995). Accordingly, RPMG was developed as a supportive treatment, with the use of a group format designed to help women develop their interpersonal skills, to perceive the universality of dilemmas pertaining to roles as women and mothers (e.g., Yalom, 1985), and to benefit from mutually supportive interpersonal networks.

In terms of therapeutic characteristics, four features define RPMG as an intervention. The first is a supportive therapists'stance. Encompassing the Rogerian constructs of acceptance, empathy, and genuineness, this is essential to foster a strong therapeutic alliance and to meet mothers' unmet developmental needs (e.g., trust vs. mistrust in relationships). The second is an interpersonal, relational focus (see Klerman, Weissman, Rounsaville, & Chevron, 1984), a component addressing the interpersonal isolation and stress figuring prominently in addicted women's lives. The third feature is discovery-based, insight-oriented parenting skill facilitation. Rather than "instructing" mothers about appropriate parenting, role plays and brainstorming exercises are used to encourage them to explore their own parenting strategies and to guide them toward optimal approaches (for further description of the RPMG intervention, see Luthar & Suchman, 1999, 2000a).

With regard to features as a group treatment, RPMG is restricted to mothers and to female therapists to optimize women's comfort in discussing sensitive issues such as their own victimization. To accommodate the frequently chaotic schedules of patients in methadone treatment, group membership is open or rotating. Although closed-group membership can promote group cohesion and trust, open enrollment provides the opportunity to engage women in treatment when each of them is highly motivated to join. Sessions are led by a graduate level clinician with expertise in working with families as well as addiction-related issues.1 All sessions are semistructured, and a therapists' manual (Luthar, Suchman, & Boltas, 1997) provides a detailed outline for addressing each session topic.

With regard to children's age span, the group intervention was intentionally designed to accommodate mothers of children birth to 16 years for the following reasons. First, a broad age span allowed mothers a natural context within which to share experience and provide guidance to one another, to ask each other questions about upcoming developmental stages, and to share advice with newer mothers about earlier phases of development. Second, our aim was to provide parental guidance that could apply broadly to parenting across different phases of development rather than focusing more specifically on any one stage of child development. For example, although limit setting strategies vary with children's age, limit setting can be more generally understood and applied as a means to maintaining a calm family environment in which the parent maintains control and order. Our aim was to discuss themes such as this one that were more or less universal to all stages of parenting so that mothers could adopt new views about the parent-child relationship and apply them broadly with all children in their families. In contrast to behavioral parent training programs that aim to teach parents to manage children's misbehavior (see, e.g., Catalano et al., 1999; Kumpfer, 1998), this approach aimed to promote mothers' understanding of their children's needs more broadly, including the need for support, nurturance, structure, limits, emotional regulation and security.

Go to:
The Pilot Study
The RPMG treatment was originally designed, manualized, and tested as part of a 3-year psychotherapy development project (Luthar & Suchman, 2000a). Opioid abusing women who received this intervention along with standard treatment in methadone programs were compared with those receiving standard treatment alone. Standard treatment entailed participation in weekly, 1-hr counseling groups and periodic meetings with case managers to secure basic needs (e.g., housing or welfare benefits). The counseling groups were led by certified drug clinicians and focused on information on the unfolding of addictions and pitfalls of addictive behaviors.

Effects of the RPMG intervention were evaluated in terms of the women's functioning as parents, their psychological functioning, and adjustment of their children. The single most critical domain was the mother's risk for maltreating behaviors, a serious problem among addicted parents (Ammerman, Kolko, Kirisci, Blackson, & Dawes, 1999; Dore & Doris, 1998; Dunn et al., 2002; Rogosch, Cicchetti, Shields, & Toth, 1995); this was assessed via the women's own reports and also by children's reports for children over 7 years of age. Also assessed were women's positive parenting behaviors in terms of the affective quality of the relationship: involvement and communication with their children. The women's psychosocial adjustment was assessed in terms of satisfaction in their roles as mothers as well as depressive symptoms, and their children's psychosocial functioning (e.g., internalizing, externalizing, and clinical, school, and personal maladjustment) were evaluated by both mothers' and children's reports. Finally, data on the women's drug use were also examined, as improvements in addicted women's psychosocial functioning can carry over to their substance use as well (e.g., Najavits, Weiss, Shaw, & Muenz, 1998).

In addition to testing effectiveness, also examined in the pilot study was whether RPMG did, in fact, provide therapeutic components distinct from those in standard drug counseling. A Therapist Adherence Rating Scale was developed, with items based on the defining features of each of the two interventions (RPMG and standard drug counseling).

Results showed that at the end of the 24-week treatment, mothers receiving RPMG demonstrated lower risk for child maltreatment (by mothers' and children's reports), greater involvement with children, and more positive psychosocial adjustment, than women who received methadone counseling alone. Small to moderate effect sizes for group differences were also found for mothers' and children's reports of child maladjustment. Notably, urinalyses indicated that RPMG mothers showed greater improvements in opioid use over time than comparison mothers. At 6 months posttreatment, RPMG recipients continued to be at an advantage, although the magnitude of group differences was lower. Finally, the Therapist Adherence Scale had good psychometric properties and did discriminate between the treatments.

Relationbased intervention with at-risk mothers: Outcome in the second year of life.

HEINICKE, C. M., FINEMAN, N. R., PONCE, V. A. & GUTHRIE, D (2001)

This study shows that a home-visiting, relationship-based intervention, as defined in the UCLA Family Development Project, affects certain areas of family functioning by the time an infant reaches 12 months. Within a randomized trial design, we compared two samples of mothers who were identified as at risk for inadequate parenting in the third trimester of pregnancy with their first child. The primary risk characteristics were poverty and a lack of support. Thirty-one of these mothers experienced the intervention and thirty-three did not. Mothers given the opportunity of a positive, trusting, and working relationship with a weekly home visitor as well as a mother–infant group scored significantly higher on measures of their experienced partner and family support. The intervention also made a significant impact on three critical social-emotional mother–infant transactions in the first year of life. Thus, on a variety of indices including the responses to the Ainsworth Strange Situation, the children in the intervention group were more secure and their mothers more responsive to their needs. Children experiencing the intervention were also more autonomous and task oriented and were encouraged in this regard by their mothers. ©1999 Michigan Association for Infant Mental Health.

Relations between parent and adolescent problems among adolescents presenting for family-based marijuana abuse treatment

Kamon JL, Stanger C, Budney AJ, Dumenci L. (2006)

Family-based treatments for adolescent substance abuse demonstrate efficacy and are becoming a treatment of choice. Family risk factors for substance abuse may present barriers to or suggest targets for modification during treatment. The sample included 149 adolescents presenting for substance abuse treatment and their parents. Structural equation modeling tested the hypothesis that parent psychological problems, parent substance use, and parenting behaviors influence adolescent psychological problems and substance use. This study is among the first to examine the unique impact of maternal and paternal variables on adolescent problems within one analytical model. Results indicated that parental psychological problems were directly associated with adolescent psychological problems after controlling for parent substance use and parenting behaviors. Paternal positive involvement and poor monitoring were also independently associated with adolescent substance use. Results suggest that both mothers' and fathers' symptoms of psychopathology play an important role in the symptoms of adolescents in treatment for substance abuse. Findings highlight the need for family-based assessment in adolescent treatment populations to address important clinical and research questions.

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.

Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents

Pakenham, K. I. and S. Bursnall (2006)

Objective: To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents. Subjects: A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability. Method: A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes. Results: Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect. Conclusions: Findings delineate the key impacts of young caregiving and support a stress and coping model of adjustment in children of a parent with multiple sclerosis.

Relations between social support, appraisal, and coping and both positive and negative outcomes for children of a parent with MS and comparisons with children of a parent with MS and comparisons with children of healthy parents

Pakenham, K.I.. & Bursnall, S. (2006)

Abstract
OBJECTIVE:
To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents.
SUBJECTS:
A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability.
METHOD:
A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes.
RESULTS:
Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson