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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.

A Randomized Controlled Effectiveness Trial of Parent Management Training With Varying Degrees of Therapist Support

Kling, Å., Forster, M., Sundell, K., & Melin, L. (2010)

This study examined the effectiveness of a Swedish parent management training (PMT) intervention for parents of children aged 3 to 10 within the context of regular social service. Self-referred parents of 159 children (aged 3 to 10) with conduct problems were randomly assigned to either 11 practitioner-assisted group sessions (PMT-P), or a single instructional workshop followed by self-administration of the training material (PMT-S), or a waitlist control group. Intent-to-treat analyses showed that both PMT-P and PMT-S improved parent competence and reduced child conduct problems compared to the waitlist at posttest. Both training conditions showed further significant improvements at the 6-month follow-up. In direct comparison, PMT-P was superior to PMT-S on measures of child conduct problems at both posttest and follow-up. Improvement in child conduct was mediated by improvement in parent competencies and homework fidelity. The findings in this study have implications for large-scale dissemination of parent management training through different means of delivery.

A register study of life events in young adults born to mothers with mild intellectual disability

Lindblad I, Billstedt E, Gillberg C, Fernell E (2014)

BACKGROUND: Young adults, born to population-representative mothers with
intellectual disability (ID), were targeted for psychosocial/life event
follow-up.
METHODS: The whole group originally comprised 42 individuals but 3 had died and 1
had moved abroad. The remaining 38 were approached and 10 consented to
participate in an interview study. However, of the remaining 28, it was not
possible to establish contact with 21 who were instead searched for in various
official registers.
RESULTS: Most (n = 18) individuals in the study group had been in contact with
different authorities and clinics. Of the 21 individuals, 10 had contact with
social services since childhood and 4 of these had been taken into care (foster
family) and 6 had had contact families during childhood. One individual had been
taken into a treatment centre and one grew up mainly with the father. Altogether
12 (57%) of 21 individuals did not grow up full-time with their biological
mother. Twelve (57%) had major neurodevelopmental/neuropsychiatric conditions,
including five with ID and seven with attention-deficit hyperactivity disorder
(ADHD). Four individuals were registered within the Prison and Probation Service
due to various types of crimes.
CONCLUSION: Individuals born to mothers with ID in our study group were at high
risk of adverse experiences and negative outcomes, such as increased childhood
mortality, a relatively large proportion of children taken into care, high rates
of ID and ADHD in the children and of criminality in young adulthood. Taken
together with the results obtained in an in-depth interview study of those in the
originally targeted sample with whom it was possible to obtain contact, the
present findings suggest that it will be important to provide early support and
longitudinal developmental follow-up in groups of children growing up with a
mother with ID. Children in this situation appear to be at a number of risks,
probably related both to hereditary factors and to social disadvantage.

A systematic review of action imitation in autism spectrum disorder.

Williams J, Whiten A, Singh T. (2004)

Imitative deficits have been associated with autistic spectrum disorder (ASD) for many years, most recently through more robust methodologies. A fresh, systematic review of the significance, characteristics, and underlying mechanism of the association is therefore warranted. From 121 candidates, we focused on 21 well-controlled studies involving 281 cases of ASD. Overall, children with ASD performed worse on imitative tasks (Combined Logit p value < .00005). The emerging picture is of delayed development in imitation, implicating a deficit in mapping neural codings for actions between sensory and motor modalities, rather than in motivation or executive function. We hypothesise that ASD is characterised by abnormal development of these mappings, such that they are biased towards object-oriented tasks at the expense of those required for action imitation per se.

A treatment outcome study of bereavement groups for children

Tonkins, S.A. & Lambert, M.J. (1996)

ABSTRACT An empirical study of the effectiveness of an eight-week children's bereavement psychotherapy group was undertaken. Children, aged 7–11, who had a parent and/or sibling die were initially assigned to either a treatment group or a waiting list control group and followed over an eight-week period. Participation in the experimental group was associated with a significant decrease in symptomatology, as assessed by multiple measures using multiple sources. Despite a small sample, the intervention was sufficiently powerful to suggest the use of short-term group therapy to help children cope with the death of a parent and/or sibling.

A treatment outcome study of bereavement groups for children - ResearchGate. Available from: http://www.researchgate.net/publication/226810839_A_treatment_outcome_study_of_bereavement_groups_for_children [accessed Jun 23, 2015].

A Unified Theory of Development: A Dialectic Integration of Nature and Nurture

Sameroff, A. (2010)

The understanding of nature and nurture within developmental science has evolved with alternating ascendance of one or the other as primary explanations for individual differences in life course trajectories of success or failure. A dialectical perspective emphasizing the interconnectedness of individual and context is suggested to interpret the evolution of developmental science in similar terms to those necessary to explain the development of individual children. A unified theory of development is proposed to integrate personal change, context, regulation, and representational models of development.

Activitybased intervention for multiple-disabled visually impaired people

Tellevik JM, Elmerskog B. (2009)

The article describes assessment, planning and training for people with multiple disabilities and visual impairment (MDVI). The ImPAct MDVI project, an EU Comenius programme, addressed concerns expressed by teachers of children and young people with MDVI as to how they are expected to integrate the diverse curriculum elements and particular skills they have been taught into a meaningful educational process. The aim of the project was to develop a holistic teaching approach, based on activities, participation and involvement in real life situations, aiming at involving people with MDVI in their social and physical context. This was achieved by applying a 5-step working model (Tellevik and Elmerskog, 2001), which sought to support the development of assessment and planning intervention strategies.

ADHD ur ett socioekonomiskt perspektiv

Nilsson I, Nilsson-Lundmark E. (2013)

Vi har i ett antal studier analyserat ADHD-problematiken ur ett socioekonomiskt perspektiv med hjälp av kalkylmodeller vi utvecklat under cirka 30 års tid. Tidiga insatser kring barn med ADHD ger – vid sidan av de mänskliga vinsterna - utomordentligt höga samhällsvinster. Flera miljoner kronor per barn för perioden upp till 20 års ålder. Än tydligare blir det då man följer vuxna, i det här fallet med kriminell belastning. Samhällskostnaderna för uteblivna insatser för en grupp om 30 intagna kan under en 20 års period uppgå till mer än 800 Mkr. En insats mot denna målgrupp, av det slag som gjorts vid projektet vi följt på
Norrtäljeanstalten ger på 20 års sikt sannolikt en finansiell avkastning på mer än 250 Mkr eller 80 gånger insatsen. Tidiga, samordnade och evidensbaserade insatser för denna målgrupp är en social investering med utomordentligt hög lönsamhet. Ur ett strukturellt perspektiv kan frånvaron av kloka insatser enklast beskrivas som bristen på helhetssyn och långsiktighet då beslut tas kring denna målgrupp. Priset för detta är högt, mänskligt och ekonomiskt.

Adolescents’ perceptions of social support after the death of a parent

Gray, R. (1989)

Fifty individuals who had lost a parent through death during adolescence were interviewed. All deaths had occurred within five years and not less than six months before the study was initiated. Half the participants had been members of a peer-support group in their secondary school. When asked to describe the types of help received during their bereavement and to rate the usefulness of such help, most participants reported that a peer (40 percent) or the surviving parent 28 percent had been "most helpful," primarily through emotionally supportive behavior. The results indicated that the source of support had often influenced the style of support and among adolescents who had participated in a peer-support the participants' perceptions of its value. The perceptions of support had not.

Anhörig till person med psykisk sjukdom eller funktionsnedsättning – en resurs i behov av stöd. Fokus på Anhöriga nr 17

Ewertzon, M. (2010)

Anhöriga som vårdar eller stödjer en närstående ska erbjudas stöd, enligt en ny bestämmelse i socialtjänslagen. Bestämmelsen innebär att många kommuner behöver uppmärksamma målgrupper som de inte har uppmärksammat tidigare. En av dessa målgrupper är anhöriga till personer med långvarig psykisk sjukdom eller psykisk funktionsnedsättning. Mats Ewertzon - doktorand vid Örebro universitet och adjunkt vid Högskolan Dalarna - beskriver här de anhörigas situation och resonerar kring hur stödet kan utformas. Artikeln är den första av två som handlar om stöd till målgruppen.

Anhöriga som ger omsorg till närstående– fördjupad studie av omfattning och konsekvenser

Socialstyrelsen (2014)

Sammanfattning

De flesta människor hamnar någon gång i en situation där de behöver ge omsorg till en närstående på grund av sjukdom, funktionsnedsättning eller hög ålder.

Socialstyrelsen genomförde 2012 en pilotundersökning för att kartlägga anhörigomsorgens omfattning och konsekvenser. Den visade bland annat att nästan var femte person äldre än 18 år ger omsorg till en närstående och att omfattande omsorg kan få stora konsekvenser för omsorgsgivarnas hälsa, sysselsättning och livskvalitet. Den här rapporten redovisar resultaten från två studier om dessa konsekvenser: Socialstyrelsen har gjort fördjupade analyser av 2012 års data och de analyserna har kompletterats med en intervjuundersökning för att illustrera vad olika situationer av anhörigomsorg kan innebära.

Sammanfattningsvis kan Socialstyrelsen konstatera följande:

Omsorg som ges av anhöriga till närstående har en samhällsbärande funktion och är inte bara ett komplement till hälso- och sjukvård och socialtjänst. I vissa fall ersätter anhörigomsorgen samhällets insatser för att de berörda vill ha det så, eller för att insatserna inte upplevs vara tillräckliga. I de flesta fall är omsorgsgivandet ett frivilligt åtagande men omfattningen och formerna är inte alltid självvalda. Det finns brister i samordningen av insatser från hälso- och sjukvård och socialtjänst för personer med stora vård- och omsorgsbehov, vilket ökar belastningen för de anhöriga som nödgas kompensera för det. Omsorgens omfattning har stor betydelse för graden av påverkan hos anhöriga. Ett stort omsorgsåtagande riskerar att försämra hälsan och livskvaliteten hos de anhöriga samt möjligheterna att förvärvsarbeta och studera, medan ett mindre omfattande åtagande kanske inte har någon negativ påverkan alls. Resultatet visar också att olika konsekvenser för hälsa och förvärvsarbete hänger nära samman och att de i sin tur formar livskvaliteten. Relationen mellan den som ger och den som tar emot omsorg har betydelse för hur givaren upplever situationen. De som ger omsorg till en ett barn tycks påverkas i högre grad när det gäller förvärvsarbete, ekonomi och livskvalitet, medan den som ger omsorg till en make, maka eller partner tycks påverkas i högre grad vad gäller hälsa. Anhöriga i åldrarna 30–44 år som ger omsorg till en närstående tycks påverkas mer än andra ål-dersgrupper vad gäller psykisk och fysisk hälsa, ekonomi och möjligheter till förvärvsarbete. För att säkerställa att omsorg som ges av anhöriga är frivillig behöver flera olika aktörer mer kunskap om anhörigas behov. Det gäller bland annat hälso- och sjukvården, socialtjänsten, arbetsgivare, Försäkringskassan och skolan. Stöd och information som erbjuds anhöriga omsorgsgivare behöver vara individuellt utformat och anpassat till både den som ger och tar emot omsorg. Patient- och anhörigorganisationer kan bidra med viktig kunskap i behovsinventeringar och vid utformande av stöd till anhöriga omsorgsgivare. Det är angeläget att fortsätta följa upp omfattningen och konsekvenserna av anhörigomsorg. Närmare en femtedel av den vuxna befolkningen ger omsorg till närstående. De omsorgsgivare som ger omfattande omsorg drabbas av konsekvenser vad gäller såväl hälsa som förvärvsarbete och livskvalitet och är därmed en utsatt grupp. Kommande uppföljningar bör ha fokus på att identifiera de grupper som i högre utsträckning påverkas negativt av att ge omsorg för att kartlägga vilka särskilda behov de har samt hur samhället på bästa sätt kan möta dessa personers behov och stödja dem i omsorgsarbetet. Därtill är det angeläget att följa upp anhöriga omsorgsgivare som är utrikes födda, eftersom tidigare studier inte lyckats fånga denna grupp.

Anhörigas erfarenheter av att leva nära en person med psykossjukdom

Gyllin, Sanela & Rosenberg, Catarina (2010)

Inte bara den som är sjuk utan även de anhöriga drabbas av psykossjukdomen. Psykiatrireformen som delvis tillkom för att stärka den psykiskt funktionshindrade individens rätt till självbestämmande, blev för många anhöriga en tung börda. De anhöriga känner sig ensamma och utan stöd, med den stress och oro som psykossjukdom innebär. Problemet har emellertid uppmärksammats och år 2009 tillkom en ny lag om utökat stöd för anhöriga till psykiskt funktionshindrade.

Anknytning till arbetsmarknaden och ungas etablering

Bäckman O (2010)

Den utveckling mot ökad polarisering som visade
sig på många samhällsområden under 1990-talet
har under 2000-talet mattats av och stabiliserats.
Fler kan försörja sig på sitt arbete men den andel
som under längre tid står både utanför arbetsmarknaden
och utanför de sociala försäkringssystemen
är oförändrad (3–4 procent). Den långvariga fattigdomen
(som varar fem år eller längre) fortsatte
att minska för alla grupper. Även om inkomsterna
ökade för alla var dock inkomstökningarna större
bland höginkomsttagarna än bland dem med låga
inkomster. Därför har inkomstskillnaderna ökat.
Den etniska boendesegregationen i de tre storstadsregionerna
har stabiliserats efter att ha ökat under
hela 1990-talet, medan den ekonomiska segregationen
uppvisar en långsamt ökande trend över tid.
Sedan flera år tillbaka märks en tydlig koppling mellan
etnisk och ekonomisk segregation i storstadsregionerna.
Konjunktursvängningarna har stor betydelse
för utsatta grupper. I högkonjunktur ökar andelen
personer som kan försörja sig på sitt arbete i alla
befolkningsgrupper. Det gör att möjligheterna att
ta sig ur fattigdom och ekonomiskt biståndstagande
ökar. De som är speciellt konjunkturkänsliga
när det gäller nyetablering på arbetsmarknaden är
ungdomar som varken arbetar eller studerar under
övergångsfasen mellan skola och arbete samt nyanlända
invandrare.
Ungdomar, ensamstående mödrar samt invandrare,
främst de nyanlända och de från utomeuropeiska
länder, har hög risk för fattigdom och andra välfärdsproblem.
Välfärdsproblem kan uppträda tillsammans
och en vanlig kombination är ohälsa och
ekonomisk utsatthet. Allvarliga sjukdomar leder
ofta till försämrade ekonomiska villkor och ökad
risk för upplösning av parförhållanden.
Barn till papperslösa föräldrar har en otrygg tillvaro
och de som föds i Sverige folkbokförs inte och
kan inte identifieras genom person- eller samordningsnummer.
Detta begränsar bland annat möjligheterna
till att få kunskap om dessa barns situation
och hälsa.
I Social rapport 2010 presenteras ny kunskap
inom olika områden. För de allra flesta är fattigdom
inte bestående – hälften lämnar den redan
inom ett år. Den som en gång varit fattig löper
däremot stor risk att återigen hamna i fattigdom.
Risken att ärva sina föräldrars fattigdom är bara
något förhöjd i Sverige, däremot är det betydligt
vanligare att barn till höginkomsttagare blir välbärgade
som vuxna.
Utbildningen är en av de viktigaste faktorerna
för ungdomars framtida möjligheter. Ju tidigare
utbildningskedjan bryts desto sämre är framtidsutsikterna.
De grupper som har låga eller ofullständiga
betyg från grundskolan har kraftigt förhöjda
risker för framtida psykosociala problem.
Betygen är särskilt viktiga för utsatta barns framtidsutsikter.
Barn som växer upp i samhällets vård
eller i familjer med återkommande ekonomiskt
bistånd lämnar grundskolan med mycket lägre
betyg än andra barn och har också mycket höga
överrisker för framtida psykosociala problem.

Applying the ICF‐CY to identify children's everyday life situations: A step towards participation‐focused code sets

Adolfsson, M. (2013)

Adolfsson M. Applying the ICF-CY to identify children's everyday life situations: a step towards participation-focused code sets

With the long-term goal to create an interdisciplinary screening tool with code sets focusing on children's participation in everyday life situations (ELS), the purpose of the present study was to identify ELS for children 0–17 years. The views of professionals and parents in Sweden, South Africa and the USA were integrated based on ICF-CY1 linkages. The chapters Self-care and Major life areas seemed most obvious to include in ELS. At the 2nd ICF-CY level, 11 categories emerged as ELS, with Hygiene and Recreation as the most obvious. Two sets of ELS were identified for infants/preschoolers and school-aged children/adolescents. Professionals and parents agreed on ELS for the older age group. Findings suggest that ELS differ in context specificity depending on maturity and growing autonomy. The study has implications for the future screening tool that is intended to support children with disabilities in describing what matters most to them in intervention planning.

Approaches to needs assessment in children’s services

Ward, Harriet (2002)

Examining the assessment of need in children's services this book addresses the full spectrum of practice, policy and research developments in the field. The contributors include leading academics, policy makers and senior practitioners who generate a broad-based holistic approach to the assessment of children in need. They show how needs assessment in children's services can be used to tackle problems such as low achievement, mental ill-health and social exclusion at both individual and strategic levels.

Approaches to the Assessment of Need in Children's Services will enable service managers and practitioners to respond effectively to the increasing pressure to monitor outcomes and effectiveness in child care work, and to improve and coordinate children's welfare service provision at individual and community levels and provides an indispensable overview and analysis for anyone working or studying in child welfare and social care

Arbetsglädje bland anställda anhörigvårdare

Furåker B, Mossberg A-B (1997)

Anhörigvård innebär att det i princip är samma person som hela tiden är huvudansvarig för vårdinsatsen. I en tidigare artikel har visats att många kommunalt anställda anhörigvårdare upplever bundenheten i sitt arbete. Här fokuseras i stället arbetets ljusare sidor - förekomsten av glädje, stimulans och tillfredställelse. Analysen ger vid handen att frånvaron av arbetsglädje bl.a. ssammanhänger med upplevelsen av bundenhet. Samtidigt framkommer att en annan faktor har en ännu mer avgörande betydelse: uppskattning från omgivningen. Det visar sig också att känslan av att vara uppskattad är relaterad till hur anhörigvårdarens ekonomiska situation förändrats sedan arbetet blev betalt.

Att ge syskon utrymme

Granat, Tina, Nordgren, Ingrid & Rein, George (2006)

Rapport från barn och ungdomshabiliteringen

Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp – ett utvecklingsprojekt under åren 2000-2009

Ekenberg Lilly (2010)

Syftet med denna satsning på anhörigstöd var att pröva och utveckla en modell för anhörigstöd med Basal Kroppskännedom (BK) och samtalsstöd i grupp vid Länsenheten Råd och Stöd i Norrbotten. Förberedelsearbetet bestod av en kurs i BK och samtal för en sjukgymnast och en kurator. Dessa två konstruerade en enkät med frågor om den anhöriges relation till vårdtagaren, upplevelse av anhörigrollen, upplevelse av stöd-insatser och den anhöriges behov av förändringar. Enkäten konstruerades med idéer från ett frågeformulär använt i Socialstyrelsens "Anhörig 300" projekt. Sjukgymnasten ledde en femdagars utbildning i BK för Länsenhetens alla kuratorer. Sex anhöriggrupper med BK och samtal i grupp genomfördes under åren 2005-2009, en i Kalix, en i Piteå och fyra anhöriggrupper i Luleå. Antalet gruppträffar varierade mellan 8-11 träffar. I anhöriggruppen i Kalix deltog fem kvinnor, som var och en levde tillsammans med en man med någon form av funktionsnedsättning. I Piteå deltog två män och tre kvinnor. Tre levde i en make/maka relation, två var föräldrar och en anhörig hade ett syskon med funktionsnedsättning. I Luleå genomfördes fyra anhöriggrupper. Anhörigkonstellationen i grupperna var män och kvinnor med anhörigrelation som make/maka och föräldrar till vuxna barn med funktionsnedsättningar. Enkätutvärdering skedde i fem anhöriggrupper som besvarades vid tre tillfällen: 1) vid start av anhöriggrupp 2) vid kursavslut och 3) vid uppföljning cirka 6 månader efter kursavslut. Deltagarna gavs utrymme till att direkt efter BK-övningarna göra anteckningar om sina upplevelser direkt efter BK-övningarnas genomförande före gruppsamtalen. I en anhöriggrupp i Luleå var deltagandet så lågt att grupprocessen uteblev. I Kalix- Piteå- och två Luleågrupper medverkade deltagarna i en individuell processutvärdering om kroppsupplevelser. Resultaten av den individuella processutvärderingen visade att deltagarna upplevde BK-övningarna, som en möjlighet till en egen skön stund med avslappning utan prestation. För många ledde detta till en större lyhördhet för kroppens signaler t.ex. om hur det är i relationen och att lägga märke till sina egna behov. Efter hand utvecklades tilliten i grupperna då deltagarna utifrån sin egen tillitsprocess öppnade sig och "vågade börja berätta". Enkätutvärde-ringen visade på marginella förändringar i skattningen av anhörigsituationen. I skattningarna framkom för makar en svag trend mot en något sämre upplevelse av anhörigsituationen medan föräldrarnas skattningar visade en svag trend mot en något bättre upplevelse av sin anhörigsituation. Kommentarerna i enkäten bekräftade denna trend. Vår erfarenhet är att BK-övningar och samtal i grupp för anhöriga kräver en noggrann förberedelse och ett fruktbart möte/samarbete mellan kurator, sjukgymnast och gruppdeltagare. I NkAs kunskapsöversikt och i NkAs lärande nätverk framhålls Mötet/samtalet som "kanske som det mest underskattade anhörigstödet" (Winqvist, 2010). Eftersom denna form av stöd saknas i dagens anhörigstöd anser vi att vår modell är ett viktigt bidrag, som borde prövas och utvärderas i större skala.

Barns upplevelser när föräldrars missbruk upphört “Alltså det är svårt att må bra igen”

Alexanderson Karin, Näsman Elisabet (2017)

Artikeln bygger på intervjuer med 15 barn till föräldrar med missbruksproblem.
Syfte: Att bidra till fördjupad förståelse av barns situation, när en förälders missbruk upphört.
Metod: En explorativ intervjustudie med barndomssociologi och symbolisk interaktionism som teoriram.
Resultat: Att missbruket upphört ger barn utrymme att känna efter hur de mår, att reflektera över missbrukets påverkan på deras hälsa och personlighet och att försöka förändra sig och sitt liv. Deras behov av bearbetning kan kvarstå lång tid. Det kan ta tid och vara svårt att bygga upp relationen till föräldern. Barn kan känna omsorgsansvar men också misstro och oro för återfall. Tonåringen kan dock se en möjlighet att gå vidare med sitt eget liv. Om missbruket bara upphör för en av två föräldrar med missbruksproblem är barn fortfarande berörda av missbruk.
Konklusion: Barns behov av bearbetning i relation till föräldrarna kan både ta och kvarstå lång tid oavsett om barnet bor med föräldern eller inte. Barnen kan både behöva hjälp för egen del och i relation till föräldern. Det ska vara påbjudet att professionella arbetar med ett familjeperspektiv, oavsett organisatoriska uppdelningar och oavsett om förälder och barn bor ihop eller ej. Det kräver strukturer, rutiner och resurser för samverkan över organisatoriska gränser.

Behavioral family counseling for substance abuse: a treatment development pilot study

O'Farrell TJ, Murphy M, Alter J, Fals-Stewart W. (2010)

Substance-dependent patients (N=29) living with a family member other than a spouse were randomly assigned to equally intensive treatments consisting of either (a) Behavioral Family Counseling (BFC) plus Individual-Based Treatment (IBT) or (b) IBT alone. Outcome data were collected at baseline, post-treatment, and at 3- and 6-month follow-up. BFC patients remained in treatment significantly longer than IBT patients. BFC patients improved significantly from baseline at all time periods on all outcomes studied, and had a medium effect size reflecting better primary outcomes of increased abstinence and reduced substance use than IBT patients. For secondary outcomes of reduced negative consequences and improved relationship adjustment, both BFC and IBT patients improved significantly and to an equivalent extent. The present results show BFC is a promising method for retaining patients in treatment, increasing abstinence, and reducing substance use. These results also provide support for larger scale, randomized trials examining the efficacy of behavioral family counseling for patients living with family members beyond spouses.

Being the next of kin of an adult person with muscular dystrophy

Boström, K., Ahlström, G., & Sunvisson, H. (2006)

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Bereaved adolescents’ evaluations of the helpfulness of support-intended statements: associations with person centeredness and demographic, personality, and contextual factors

Servaty-Seib, H.L., & Burleson, B.R. (2007)

Currently, there is a lack of reliable methods for assessing how bereaved adolescents perceive the informal support they receive. This study provides methodological refinements in, and a theoretical grounding for, a recently developed measure designed to distinguish support efforts that bereaved adolescents find helpful versus harmful. Participants (114 bereaved adolescents) completed the Support Intended Statement Survey (SISS), which assessed the perceived helpfulness of 14 strategies intended to comfort the bereaved. These 14 strategies were coded for the degree of person centeredness they manifested. Level of strategy person centeredness was strongly correlated with perceived strategy helpfulness. Reported helpfulness of the strategies varied substantially as a function of participants' general levels of perceived support availability, but varied less as a function of demographic and contextual factors.

Bereavement support for children

Auman, M.J. (2007)

The death of a parent is one of the most significant and stressful events children can encounter. Surviving children may experience psychiatric problems and social dysfunction during their childhood and possibly throughout their adult lives. Children surviving a sibling's death may develop behavioral problems, because no one can fill the emptiness that remains in their lives, especially if their relationship was close. It is vital to recognize the trauma experienced by children who have suffered the loss of a loved one. Adults need to know when a grieving child needs help. Literature supports the need for education and counseling for grieving children. School nurses can be instrumental in meeting these needs for school-age children by performing early, comprehensive assessments, educating school administration regarding the benefits of bereavement support, initiating appropriate referrals, and providing bereavement support.

Bibliotherapy for youth and adolescents – school-based application and research

McCulliss, D. & Chamberlain, D. (2013)

Bibliotherapy in the elementary, middle, and high-school classroom is used to foster healthy social and emotional growth in children and young adults to develop insight, a deeper understanding of self, solutions to personal problems, development of life skills, or enhanced self-image. The focus of this article is on how bibliotherapy can be used to address students' specific issues ranging from mild behavioral issues to physical and psychosocial conditions. Based on an extended review of the literature on bibliotherapy, this article may serve as a guide to readers interested in developing a bibliotherapy program for youth and adolescents. Recommendations for research are also noted.

Bibliotherapy: using books to help bereaved children

Berns, C.F. (2003)

This article explores bibliotherapy as a process in which death-related literature is used to help bereaved children cope with experiences of death and loss. For that exploration, this article defines bibliotherapy, offers an argument in support of its value, and suggests how a potential bibliotherapist might begin. Suggestions are made for selecting and using stories in bibliotherapy. Since most bibliotherapy is actually used as an optional tool in bereavement support groups, guidelines are offered as to how it might best be implemented in that context. Much of this discussion is also relevant to the use of bibliotherapy on a one-to-one basis involving a particular child and an adult guide. Examples of stories and books for children that I have used in bibliotherapy are mentioned throughout this article.

Burden of informal care giving to patients with psychoses: A descriptive and methodological study

Flyckt, L., Löthman, A., Jörgensen, L., Rylander, A., & Koernig, T. (2013)

Background: There is a lack of studies of the size of burden associated with informal care giving in psychosis.
Aims: To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden.
Method: Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2.
Results: One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems.
Conclusion: Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses.

Care allowances for the frail elderly and their impact on women care-givers. OECD Labour Market and Social Policy Occasional Papers, No. 41

Jenson, J. and S. Jacobzone (2000)

This report discusses the impact of care allowances on women care-givers. These programmes, involving some payment for care in informal care settings, have recently been introduced in several OECD Member countries. While their primary goal has been to help older persons in need of care, their consequences for the persons providing care also deserve to be analysed. The bulk of informal care is provided by women care-givers. In this respect, long-term care systems involve a partnership between formal care systems, the state, and the family, in order to provide a continuum of care. This also renders the analysis very complex. The main objective of the paper is to answer the question: what is the impact for women care-givers of various models of care allowances for the frail elderly?
These care allowances have been primarily instituted to address the needs of older persons for care, as well as to offer some compensation for caring responsibilities.

Care coordination: integrating health and related systems of care for children with special health care needs.

Committee on Children With Disabilities (1999)

Care coordination is a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care. Care coordination often is complicated because there is no single entry point to multiple systems of care, and complex criteria determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care pediatricians have a vital role in the process of care coordination, in concert with the family.

Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?

van den Heuvel ET, Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B. (2002)

In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.

Loss and grief in patients with Schizophrenia: Onliving in another world

Mauritz M, Van Meijel B. (2009)

AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.

Manual for the ASEBA Preschool Forms and Profiles

Achenbach TM, Rescorla LA. (2000)

The Manual for the ASEBA preschool forms & profiles explains the development, standardization, applications, & profiles for the CBCL//l½-5 and C-TRF. The Manual also provides reliability & validity data, case illustrations, problem prevalence rates, scale scores, scoring instructions, & answers to common questions. 180 pp.

Mapping images to objects by young adults with cognitive disabilities

Carmien, S. & Wohldman E. (2008)

How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.

Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences.

Meagher G, Szebehely M, editors (2013)

The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.

'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners.

Gosman-Hedstrom G, Dahlin-Ivanoff S. (2012)


INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

Med rätt att bestämma själv? – ”exit”, ”voice” och personlig assistans

Hugemark, Agneta (2004)

This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.

Mediation of the effects of the Family Bereavement Program on mental health problems of bereaved children and adolescents

Tein, J., Sandler, I.N., Ayers, T.S., & Wolchik, S.A. (2006)

This study presents an analysis of mediation of the effects of the Family Bereavement Program (FBP) to improve mental health outcomes of girls at 11 months following program participation. The FBP was designed based on a theory that program-induced change in multiple child and family level mediators would lead to reductions in children's mental health problems. Mediational models were tested using a three wave and a two wave longitudinal design. Using a three wave longitudinal design, FBP effects on three variables at T2 (increased positive parenting, decreased negative events, and decreased inhibition of emotional expression) were found to mediate the effects of the FBP on mental health problems at 11-month follow-up. Using a two-wave longitudinal design, support was found for FBP effects on three additional variables at 11-month follow-up (increased positive coping, decreased negative thoughts about stressors, and decreased unknown control beliefs) to mediate program effects to reduce mental health problems at 11-month follow-up. The discussion focuses on theoretical explanations for the mediational effects and on implications for identifying "core components" of the FBP that are responsible for its effects to reduce mental health problems of girls.

Min syster fick Alzheimer – om vård och bemötande ur ett anhörigperspektiv

Andersson, Irene (2011)

Moniqa Andersson är bara 58 år då hon får diagnosen Alzheimers sjukdom. I boken Min syster fick Alzheimer - om vård och bemötande ur ett anhörigperspektiv beskriver hennes syster, bokens författare, hur hon går bredvid genom sjukdomsförloppet och kämpar för att Moniqa ska få en trygg och fungerande vård på ett demensboende. Min syster fick Alzheimer är inte bara en engagerad och personlig skildring av hur en demenssjukdom utvecklas och hur de närstående drabbas, den ger också en värdefull inblick i hur vårdsystemet fungerar. Iréne Andersson reflekterar träffsäkert över bemötandet inom den kommunala demensvården och psykiatrin samt ger ett antal konkreta råd om vad som skulle kunna förbättras. Hon problematiserar vidare begreppen "anhörig" och "anhörigsjukdom" samt tar upp frågor om identitet, etik och ansvar. Här kommer många anhöriga och närstående att känna igen sig och få stöd. Författarens iakttagelser gör också boken särskilt intressant för personal i kommun och landsting. Iréne Andersson arbetar som lektor vid Malmö högskola med utbildningsvetenskap samt forskar om genus och fredshistoria. Hon är även flitigt anlitad av Alzheimerföreningen som föreläsare.

Motivation for Money and Care that Adult Children Provide for Parents: Evidence from “Point-Blank” Survey Questions. Working Paper 2004-17

Cox, D. and B. Soldo (2004)

When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.

Mönster i anhörigomsorgen: En uppföljning i Mullsjö 2010

Malmberg, B. and G. Sundström (2012)

Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009).

År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig.

I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.

 

Negotiating family responsibilities

Finch, J. and J. Mason (1993)

Negotiating Family Responsibilitiesprovides a major new insight into contemporary family life, particularly kin relationships outside the nuclear family. While many people believe that the real meaning of 'family' has shrunk to the nuclear family household, there is considerable evidence to suggest that relationships with the wider kin group remain an important part of most people's lives.
Based on the findings of a major study of kinship, and including lively verbatim accounts of conversations with family members concepts of responsibility and obligation within family life are examined and the authors expand theories on the nature of assistance within families and argue that it is negotiated over time rather than given automatically.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.

Sowers KM, Ellis RA, Washington TA, Currant M. (2002)

Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.

Parent management of attendance and adherence in child and adolescent therapy: A conceptual and empirical review

Nock, M. K., & Ferriter, C. (2005)

There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.

Parentally bereaved children and posttraumatic growth: insights from an etnographic study of a UK childhood bereavement service

Brewer, J. & Sparkes, A. (2011)

Drawing on data generated from a two-year ethnographic study of the Rocky Centre (achildhood bereavement organisation in the UK), this article explores the positive changes and themes of posttraumatic growth experienced by parentally bereaved young people. Although the broader study generated data from participant observation, interviews and a documentary analysis, this article focuses specifically on the interviews with 13 young people to identify the themes of posttraumatic growth that emerged from the participants' narratives. Of these, four had been recently bereaved and nine had experienced the death of a parent over 10 years ago. Interviews were transcribed verbatim and analysed for themes that reflected the young people's experiences of growing through grief. Those identified were as follows: positive outlook, gratitude, appreciation of life, living life to the full, and altruism. Each theme isdiscussed in turn, and the implications of the findings for research and practice are addressed.

Paternal postpartum depression, its relationship to maternal postpartum depression, and implications for family health

Goodman, J. (2004)

BACKGROUND:
Much attention has been paid to the problem of postpartum depression in women. However, there is some indication that men also experience depression after the birth of a child, and that paternal depression is linked to maternal depression.
AIMS:
The purpose of this integrative review was to examine current knowledge about postpartum depression in fathers. Specific aims were (1) to examine the incidence of paternal depression in the first year after the birth of a child, (2) to identify the characteristics and predictors of paternal postpartum depression, (3) to describe the relationship between maternal and paternal postpartum depression, and (4) to discuss the influence of paternal depression on the family and infant.
METHODS:
A literature search from 1980 to 2002 was carried out using the CINAHL, PsychInfo, and Medline electronic databases. Twenty research studies were identified that included incidence rates of paternal depression during the first year postpartum. These were further examined and synthesized regarding onset, severity, duration, and predictors of paternal depressive symptoms, and for information about the relationship between maternal and paternal depression.
FINDINGS:
During the first postpartum year, the incidence of paternal depression ranged from 1.2% to 25.5% in community samples, and from 24% to 50% among men whose partners were experiencing postpartum depression. Maternal depression was identified as the strongest predictor of paternal depression during the postpartum period. The implications of parental depression for family health were discussed.
CONCLUSIONS:
Postpartum depression in men is a significant problem. The strong correlation of paternal postpartum depression with maternal postpartum depression has important implications for family health and well-being. Consideration of postpartum depression in fathers as well as mothers, and consideration of co-occurrence of depression in couples, is an important next step in research and practice involving childbearing families.

Perceived burden, lived experiences and experiences of learning processes and illness management in parents of children with severe or moderate haemophilia

Myrin Westesson, Linda (2019)

Doktorsavhandling

Haemophilia is a complex condition to manage, especially for parents of newly diagnosed children, and the illness affects the whole family. The parents are deeply involved in the child's treatment, as they frequently have to administer intravenous injections at home. The overall aim was to investigate perceived burden, lived experiences and to explore experiences of learning processes and illness management in parents of children with severe or moderate haemophilia. In studies I-III, a qualitative approach was motivated to describe experiences of parenting a child with haemophilia. Study III employed a longitudinal design to explore the learning process, while study IV employed a quantitative method with a cross-sectional survey. The results reveal that the mothers often needed to become reconciled both with the fact of the child's illness and their own carriership. However, having a child with severe or moderate haemophilia was life changing for both fathers and mothers. The parents were forced into a situation where they had to learn about and manage their child's illness in daily life. Thus, a desire to become independent of health care professionals in this respect emerged as a key incentive for learning. How this learning process developed and how long it took depended on different factors. For example, parents of children with past or present inhibitors reported higher perceived burden than parents of children without a history of inhibitors. Nevertheless, independently managing home treatment was essential for the parents to feel in control of their life-world again. One conclusion is that female carriers need more knowledge about their carriership and would benefit from counselling before starting a family. One suggestion is that acceptance of the child's illness and reconciliation with the new complex family situation could be promoted with person-centred care. Furthermore, the findings underline that health care professionals need to be aware of an increased burden on parents of young children and particularly the burden on parents of young children with inhibitors.

Personlighetsstörningar. Kliniska riktlinjer för utredning och behandling. Svensk Psykiatri nr 9.

Svenska Psykiatriska Föreningen (2006)

Kliniska riktlinjer för personlighetsstörningar som nu presenteras är
nummer 9 i en serie av riktlinjer som framtagits i Svenska Psykiatriska
Föreningens regi sedan 1996. Tidigare har riktlinjer publicerats
med titlarna Schizofreni och schizofreniliknande tillstånd, Förstämningssjukdomar,
Ångestsyndrom, Alkoholproblem, Självmordsnära
patienter, Tvångsvård, Äldrepsykiatri och Ätstörningar. Dessa riktlinjer
kan beställas från Förlagshuset Gothia (www.gothia.verbum.se,
sök "psykiatri").
Människor med personlighetsstörningar har länge betraktats som
en svår patientgrupp då interaktionen med omgivningen ofta blir problematisk
och konfliktfylld. Personlighetsstörningar är vanligt förekommande
i den vuxna befolkningen. Prevalensen i vården är hög –
inte minst bland psykiatriska patienter – och samsjuklighet med andra
psykiatriska tillstånd är vanlig. Det finns ett stort behov av kunskap
om personlighetsstörningar, vilket gör att de kliniska riktlinjer
som nu presenteras är mycket angelägna och välkomna. Arbetsgruppen
med Lisa Ekselius i spetsen har på ett mycket förtjänstfullt sätt
åskådliggjort personlighetsstörningarnas kliniska uttryck, komplexitet
och drabbade personers subjektiva lidande. Ett av huvudsyftena
med de nu presenterade riktlinjerna är att göra personlighetsstörningarna
igenkännbara för oss alla som möter patienter med dessa tillstånd
i vår kliniska vardag. Genom att tidigt kunna identifiera personlighetsstörningar
hos patienter, kan man formulera realistiska behandlingsmål
och minska risken för att de hamnar i ofruktsamma
behandlingskontakter. Detta gäller inte minst många patienter som
behandlas för ett axel-I-syndrom. Idag finns en rad diagnostiska
5
hjälpmedel som kan underlätta identifiering av personlighetsstörningar.
Trots att det fortfarande råder brist på empirisk forskning inom
området finns det belägg för att dessa störningar går att behandla
framgångsrikt. Tydlig struktur samt värnande om den terapeutiska alliansen
mellan patient och behandlare är väsentliga för all form av behandling
av patienter med personlighetsstörningar.
Personlighetsstörningsproblematiken leder många gånger till funktionella
svårigheter i livet, känsla av utanförskap och subjektivt lidande.
Inte minst gäller det patienter med borderline personlighetsstörning,
där även risken för självskadebeteende och suicid är hög. Det är
hoppfullt att behandlingsmetoder som dialektisk beteendeterapi
(DBT) har visat sig vara effektiv för dessa patienter. Andra personlighetsstörningar,
främst antisocial personlighetsstörning, åsamkar
framför allt omgivningen lidande och problem. Ofta förvärras detta
av koppling till missbruk och leder inte sällan till våld och kriminalitet.
I dagens samhällsklimat är riskbedömning av upprepat våld en viktig
men grannlaga uppgift. Inom rättspsykiatrin, där många av dessa
patienter finns, används idag bedömningsinstrument som har visat sig
kunna bidra till säkrare bedömning av återfallsrisk. För patienter
utanför den rättspsykiatriska vården är riskbedömningsinstrumentet
osäkrare och det finns för närvarande inget som kan ersätta en samlad
klinisk bedömning. Det är dock viktigt att riskbedömningar görs
på ett så strukturerat sätt som möjligt av patienter med personlighetsstörning,
särskilt vid samtidig förekomst av missbruk.

Places social relations and activities in the everyday lives of folder adults with psychiatric disabilities: an interview study

Nordström, M., Dunér, E., Olin, A., & Wijk, H. (2009)

BACKGROUND:
Knowledge about the daily life of older adults with psychiatric disabilities is extremely limited, especially from the standpoint of the individual. The overall aim of this study was to describe and analyze the ways in which older adults with a psychiatric disability experience places, social relations and activities in different arenas of their everyday lives.
METHOD:
Twelve older adults (>55 years) with a psychiatric disability were interviewed either once or twice, using different interview techniques. The first interviews were semi-structured and the second were in-depth interviews guided by a site-map. The interview texts were analyzed using qualitative content analysis, proceeding from open to focused coding in several steps.
RESULTS:
Although the respondents spent most of their time in their own homes, some also spent a lot of time at day-care centers and other similar places. The amount of time spent in places in the public arena varied a great deal. The interviewees' experiences of the places, relationships and activities in their everyday lives can be related to aspects of freedom and coercion, internal and external structure, and relationships and support.
CONCLUSION:
The provision of a varied range of services and support in diverse settings in order to make these accessible to persons of different ages and needs is an important challenge for welfare politics.

Positive parenting as a protective resource for parentally bereaved children

Haine, R.A., Wolchik, S.A., Sandler, I.N., Millsap, R.E. & Ayers, T.S. (2006)

Positive parenting was examined as a protective resource against the adverse effects of negative life events on parentally bereaved children's mental health problems. The sample consisted of 313 recently bereaved children ages 8 to 16 and their current caregiver. Both the compensatory (direct effect independent of negative life events) and the stress-buffer (interactive effect with negative life events) protective resource models were examined and child gender was explored as a moderator of both models. Results revealed evidence for the compensatory protective resource model for both child and caregiver reports of mental health problems. No evidence of the stress-buffer model or child gender as a moderator was found. Implications for the understanding of children's responses to the death of a parent and the development and implementation of preventive interventions are discussed.

Prevalence and correlates of adult attentiondeficit hyperactivity disorder: meta-analysis

Simon, V., Czobor, P., Balint, S., Meszaros, A., & Bitter, I. (2009)

BACKGROUND:
In spite of the growing literature about adult attention-deficit hyperactivity disorder (ADHD), relatively little is known about the prevalence and correlates of this disorder.

AIMS:
To estimate the prevalence of adult ADHD and to identify its demographic correlates using meta-regression analysis.

METHOD:
We used the MEDLINE, PsycLit and EMBASE databases as well as hand-searching to find relevant publications.

RESULTS:
The pooled prevalence of adult ADHD was 2.5% (95% CI 2.1-3.1). Gender and mean age, interacting with each other, were significantly related to prevalence of ADHD. Meta-regression analysis indicated that the proportion of participants with ADHD decreased with age when men and women were equally represented in the sample.

CONCLUSIONS:
Prevalence of ADHD in adults declines with age in the general population. We think, however, that the unclear validity of DSM-IV diagnostic criteria for this condition can lead to reduced prevalence rates by underestimation of the prevalence of adult ADHD.

Prevention and Intervention Strategies With Children of Alcoholics.

Emshoff JG, Price AW. (1999)

Objective. This article was designed to give pediatricians a basic knowledge of the needs of children who live in families with alcoholism. It briefly presents issues involved in the identification and screening of such individuals and provides primary attention to a variety of preventive and treatment strategies that have been used with school children of alcoholics (COAs), along with evidence of their effectiveness.

Methodology. A literature search including both published and unpublished descriptions and evaluations of interventions with COAs.

Results. The scope and nature of the problems of growing up in an alcoholic home are presented. The risk and protective factors associated with this population have been used as a foundation for preventive and treatment interventions. The most common modality of prevention and intervention programs is the short-term small group format. Programs for COAs should include the basic components of information, problem- and emotion-focused coping skills, and social and emotional support. Physicians are in a unique position to identify and provide basic services and referrals for COAs. School settings are the most common intervention sites, but family and broad-based community programs also have shown promise in alcohol and other drug prevention.

Conclusions. Several COA interventions have demonstrated positive results with respect to a variety of measures including knowledge of program content, social support, coping skills, and emotional functioning. Rigorous studies are needed to understand better the complex ways children deal with parental alcoholism. A need remains for empirically sound evaluations and for the delineation of research findings.

Preventive interventions in families with parental depression: Children’s psychosocial symptoms and prosocial behaviour

Solantaus, T., Paavonen, E.J., Toikka, S., & Punamäki, R.L. (2010)

The aim is to document the effectiveness of a preventive family intervention (Family Talk Intervention, FTI) and a brief psychoeducational discussion with parents (Let's Talk about the Children, LT) on children's psychosocial symptoms and prosocial behaviour in families with parental mood disorder, when the interventions are practiced in psychiatric services for adults in the finnish national health service. Patients with mood disorder were invited to participate with their families. Consenting families were randomized to the two intervention groups. The initial sample comprised 119 families and their children aged 8-16. Of these, 109 completed the interventions and the baseline evaluation. Mothers and fathers filled out questionnaires including standardized rating scales for children's symptoms and prosocial behaviour at baseline and at 4, 10 and 18 months post-intervention. The final sample consisted of parental reports on 149 children with 83 complete data sets. Both interventions were effective in decreasing children's emotional symptoms, anxiety, and marginally hyperactivity and in improving children's prosocial behaviour. The FTI was more effective than the LT on emotional symptoms particularly immediately after the intervention, while the effect of the LT emerged after a longer interval. The study supports the effectiveness of both interventions in families with depressed parents. The FTI is applicable in cultural settings other than the USA. Our findings provide support for including preventive child mental health measures as part of psychiatric services for mentally ill parents.

Projektrapport: Anhörig stöd vid Ersta sjukhus, Psykiatriska kliniken. Ht 2005 – Ht 2007

Ewertzon, M. (2007)

Ersta diakoni, Ersta sjukhus, Psykiatriska kliniken fick i Juli 2005 i uppdrag från Beställarkontoret vård vid Stockholms läns landsting (SLL) att under perioden hösten 2005 till 2007 utveckla stödinsatser riktat till anhöriga till personer med långvarig psykisk sjukdom. Uppdraget var länsövergripande och stödinsatserna skulle utformas som ett komplement till det stöd som patientens vårdgivare erbjöd. Projektet har fortlöpande genomförts i nära samverkan med intresseföreningar och psykiatriska verksamheter i Stockholms län, i syfte att optimalt tillgodose behovet av kompletterande stödinsatser bland anhöriga/närstående i länet. Stödinsatser och aktiviteter som anordnades var telefonrådgivning, psykopedagogiska grupper och öppna föreläsningar. I de 16 psykopedagogiska grupper som träffades vid fyra till sex tillfäller/grupp har totalt 204 grupper deltagit. I de sex öppna föreläsningarna med teman rörande anhöriga/närstående till person med psykisk sjukdom hat totalt ca 550 personer deltagit. De psykopedagogiska grupperna utvärderades via en enkät i samband med att de avslutades. Ett år efter avslutad grupp har fyra uppföljande fokusgruppsintervjuer genomförts bland syskon till person med psykossjukdom. I enkätutvärderingen framkom att att deltagarna värderade innehållet i föreläsningarna generellt högt. En klar majoritet uppgav att de hade fått mer kunskap om sjukdomen och behandlingen. En klar majoritet (87%) uppgav att erfarenhetsutbytet vid gruppträffarna varit till hjälp. Totalt svarande 94% att gruppträffarna varit till hjälp för dem. Mer än halva gruppen (60%) upplevde sig mindre stressade, eller att de var mindre irriterade eller oroliga vid svårigheter som har med sjukdomen att göra efter det att de deltagit i gruppträffarna. Nästan samtliga (97%) uppgav att de skulle vilja rekommendera denna form av träffar till andra personer. En majoritet (79%) önskade någon form av fortsättning eller uppföljning av träffarna, många förslag lämnades på hur dessa kan utformas. I fokusgrupperna deltog 13 personer. Eftersom det var för få personer som deltog planeras eventuellt ytterligare uppföljningar. Resultatet är ännu inte analyserat då eventuellt ytterligare intervjuer kommer att genomföras. I en första omgång framkom att majoriteten av deltagarna beskrev att träffarna haft betydelse; kunskapsmässigt och/eller känslomässigt. Även här framkom önskemål om någon form av fortsättning/uppföljning av träffarna. Deltagare som deltog i psykopedagogiska grupper under 2006 besvarade frågan "på vilka sätt de ansåg att den psykiatriska vården på bäst sätt kan hjälpa/stödja dem som anhörig/närstående till person med psykisk sjukdom". I svaren framkom förslag om hjälp/stöd på fyra nivåer; generellt stöd på samhällsnivå, eget stöd från vården, möjlighet att delta i vård och behandling samt god vård och behandling av den sjuke. Projektgruppens, som medverkade i och ansvarade för stödinsatserna, erfarenheter är att denna stödform är viktig som ett komplement till det stöd som bedrivs vid andra verksamheter i länet.

Psychological characteristics of children of alcoholics

Sher, KJ. (1997)

More than 20 years ago, researchers first noted that children of alcoholics (COA's) appeared to be affected by a variety of problems over the course of their life span. Such problems include fetal alcohol syndrome, which is first manifested in infancy; emotional problems and hyperactivity in childhood; emotional problems and conduct problems in adolescence; and the development of alcoholism in adulthood. Although much has been learned over the ensuing two decades, a number of controversial research areas remain. In particular, debate stems from the fact that despite a common interest in COA's, clinically focused literature and research-focused literature have resulted in two distinct bodies of knowledge. This article reviews important research results, with emphasis on findings generated by the alcohol-research community. Attention also is given to examining the empirical validity of concepts that have been advanced by several influential clinicians from the COA field.

Psychopatology in children of holocaust survivors: a review of the research literature

Kellerman, N. P. F. (2001)

The literature on transgenerational transmission of Holocaust trauma has grown into a rich body of unique psychological knowledge with almost 400 publications. For the time being, however, the transgenerational effect of the Holocaust on the offspring remains a subject of considerable controversy. The main question involves the presence or absence of specific psychopathology in this population. Psychotherapists kept reporting various characteristic signs of distress while research failed to find significant differences between offspring and comparative groups. In an effort to settle this question, the present review of the research literature provides a summary of the findings of 35 comparative studies on the mental state of offspring of Holocaust survivors, published between 1973-1999. This extensive research indicates rather conclusively that the non-clinical population of children of Holocaust survivors does not show signs of more psychopathology than others do. Children of Holocaust survivors tend to function rather well in terms of manifest psychopathology and differences in the mental state of offspring and people in general are small according to most research. The clinical population of offspring, however, tend to present a specific "psychological profile" that includes a predisposition to PTSD, various difficulties in separation-individuation and a contradictory mix of resilience and vulnerability when coping with stress.

På väg mot hela vägen. En utvärdering av ”Hela vägens psykiatri” i Gävleborg

Finn, Bengt & Bromark, Kristina (2011)

En rad tragiska händelser i början av 2000-talet som får stor massmedial uppmärksamhet är startpunkten för utredningen Nationell psykiatrisamordning. Utredningen syftade till att se över flera av de områden som berör social omsorg och rehabilitering av personer med psykisk sjukdom eller psykiska funktionsnedsättningar. Statliga stimulansmedel avsattes att användas till kompetenshöjande åtgärder för "baspersonal" inom landstingets psykiatri och kommunernas socialtjänst. 2008 ansökte sex kommuner i Hälsingland och landstinget i Gävleborg om dessa medel och projektet som startas får namnet "Hela vägens psykiatri i Gävleborg".
Det övergripande målet med projektet "Hela vägens psykiatri i Gävleborg" är att förstärka kompetensen bland personal som i sitt dagliga arbete kommer i kontakt med personer med psykisk sjukdom eller psykisk funktionsnedsättning. Kompetenssatsningen syftar till att öka den enskildes (brukarens/patientens) möjligheter till integration i samhället och att leva ett självständigt liv.

Relatives' experiences of the Boston Psychiatric Rehabilitation approach: a qualitative study.

Jormfeldt H, Svensson B, Hansson L, Svedberg P. (2014)

The Boston Psychiatric Rehabilitation (BPR) approach is individualized and
characterized by being based entirely on the individual's unique needs and
preferences in the areas of working, learning, social contacts, and living
environment. Relatives of clients in mental health services influence the
client's possibilities for recovery by their everyday relationship. Relatives
have, however, traditionally had a subordinated role in the care of their
mentally ill family member. The perspective of relatives is an important aspect
in the development of new approaches to psychiatric rehabilitation. The purpose
of this study was thus to describe and explore relatives' experiences of the BPR
approach. Ten relatives of clients in mental health services taking part in the
BPR were interviewed. The interviews were transcribed and analyzed with a
qualitative content analysis method to explore relatives' experiences of the BPR
intervention in a county in Sweden. The findings from the interviews could be
summarized in the theme "To meet the clients' needs" consisting of three
categories: "Dependence on staffs' competence," "Responsibility for user
involvement," and "The necessity for coordination between authorities and
caregivers." The findings suggest that relatives may contribute with important
information about clients' needs related to outcome of care. Relatives'
perspectives may be of importance in future development of BPR. Further research
about the relatives' role in psychiatric rehabilitation is needed as well as
studies that compare different kinds of psychiatric rehabilitation from the
perspective of relatives.

Relatives of psychiatric inpatients – do physical violence and suicide attempts of patients influence family burden and participation in care?

Kjellin, Lars & Östman, Margareta (2005)

A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.

Resilience Among Children Exposed to Domestic Violence: The Role of Risk and Protective Factors

Martinez-Torteya, C., Bogat, G. A., von Eye, A., & Levendosky, A. A. (2009)

Individual and family characteristics that predict resilience among children exposed to domestic violence (DV) were examined. Mother-child dyads (n = 190) were assessed when the children were 2, 3, and 4 years of age. DV-exposed children were 3.7 times more likely than nonexposed children to develop internalizing or externalizing problems. However, 54% of DV-exposed children maintained positive adaptation and were characterized by easy temperament (odds ratio [OR] = .39, d = .52) and nondepressed mothers (OR = 1.14, d = .07), as compared to their nonresilient counterparts. Chronic DV was associated with maternal depression, difficult child temperament, and internalizing or externalizing symptoms. Results underscore heterogeneous outcomes among DV-exposed children and the influence of individual and family characteristics on children's adaptation.

Scoping studies: towards a methodological framework

Arksey, H., & O'Malley, L. (2005)

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.

Self-reported exposure to intimate partner violence among women and men in Sweden: results from a population-based survey

Nybergh, L., Taft, C., Enander, V., & Krantz, G. (2013)

Background
Few population-based studies assessing IPV among randomly selected women and men have been conducted in Sweden. Hence, the aim of the current study was to explore self-reported exposure, associated factors, social and behavioural consequences of and reasons given for using psychological, physical and sexual intimate partner violence (IPV) among women and men residing in Sweden.

Methods
Cross-sectional postal survey of women and men aged 18–65 years. Bivariate and multivariate logistic regression analyses were used to identify factors associated with exposure to IPV.

Results
Past-year IPV exposure rates were similar in women and men; however, earlier-in-life estimates were higher in women. Poor to moderate social support, growing up with domestic violence and being single, widowed or divorced were associated with exposure to all forms of IPV in men and women. Women and men tended to report different social consequences of IPV.

Conclusions
Our finding that women reported greater exposure to IPV earlier-in-life but not during the past year suggests the importance of taking this time frame into account when assessing gender differences in IPV. In-depth, qualitative studies that consider masculinities, femininities power and gender orders would be beneficial for extending and deepening our understanding of the gendered matter of IPV.

Siblings of Children With Disabilities: Research Themes

Stoneman, Zolinda (2005)

Until the early 1980s, most researchers paid little attention to sibling relationships. Studies of mothers dominated the research agenda, to the almost total exclusion of fathers, extended families, and siblings. Although in early classic studies of families of children with disabilities, investigators embraced a family systems approach that included siblings (i.e., Farber & Jenne, 1963), this emphasis did not take root until recently. There has been an impressive growth in the number of published studies focusing on siblings of children with disabilities. In this paper, my goal is to examine themes in this research and reflect on our state of knowledge.

Spouses' quality of life 1 year after stroke: prediction at the start of clinical rehabilitation

Visser-Meily A, Post M, Schepers V, Lindeman E. (2005)

BACKGROUND AND PURPOSE:
The purpose of this prospective study was to identify early predictors of spouses' quality of life at 1 year after stroke.
METHODS:
At the start of clinical rehabilitation patient and caregiver characteristics, psychological factors, harmony in the relationship and social support were assessed. One year after stroke, caregiver burden (Caregiver Strain Index), life satisfaction (Life Satisfaction Checklist) and depressive symptoms (Goldberg Depression Scale) were assessed in 187 participants. Multiple regression analyses were performed.
RESULTS:
About 80% of the spouses reported low quality of life on one or more of the measures; 52% reported depressive symptoms, 54% significant strain and only 50% was satisfied with life as a whole. The regression analysis identified 'passive coping strategy of the caregiver' as the most important predictor. ADL dependency was the only baseline patient characteristic significantly related to burden and life satisfaction, but explained just 0-4% of the variance.
CONCLUSIONS:
A large proportion of caregivers perceive impaired quality of life 1 year after stroke. Caregivers at risk should be identified at the start of rehabilitation by means of coping measurement instruments or selected anamneses on coping.
2005 S. Karger AG, Basel

Striving to survive: Families’ lived experiences when a child is diagnosed with cancer

Björk, Maria, Wiebe, Thomas, Hallström Inger (2005)

When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family.

Supportive groups for siblings of pediatric oncology patients: impact on anxiety

Houtzager, B. A., Grootenhuis, B. F. & Last, B. F. (2001)

Childhood cancer can have a substantial emotional impact on the siblings of the sick child. In order to help these siblings adjust to the illness, supportive groups were started in 1994 at our medical center. The program is based on a model of psychosocial support; the aim of the group is to enhance control strategies and, thus, to reduce anxiety. It consists of five sessions and is offered to siblings aged 7–18. The study objective is to evaluate the effect of group participation on sibling anxiety. The State Trait Anxiety Inventory for Children was administered to 24 siblings before and after group participation.

Results showed that siblings experience less anxiety after participating in the group. Before group participation, a majority of the siblings were more anxious compared with normal peers. The sibling's age and sex, whether the ill child is in treatment, survival perspective, and time since diagnosis were not related to anxiety reduction. The continuation of the group is supported by its positive impact on siblings. Results must nevertheless be interpreted cautiously, considering the small number of siblings participating in the study, the lack of a control group and the restriction to one outcome measure.

"Depression Among Recipients of Informal Care: The Effects of Reciprocity, Respect, and Adequacy of Support."

Wolff, J. F. and Agree, E.M. (2004)

Abstract

OBJECTIVES:
The objective of this work was to examine the relationship of perceived quality of care to depression among recipients of informal long-term care.

METHODS:
eneralized estimating equations were used to generate population-average logistic regression models of prevalent depression, using a sample of 420 disabled community-dwelling women aged 65 or older receiving informal care obtained from the Women's Health and Aging Study Caregiving Survey.

RESULTS:
Findings confirm a substantial prevalence of depression among older women with disabilities and support the hypothesis that perceived reciprocity and respect afforded by one's primary caregiver as well as adequacy of instrumental support all were associated with a lower likelihood of being categorized as depressed, even after controlling for sociodemographic, health, and psychosocial characteristics that are known to be related to depression.

DISCUSSION:
Perceived quality of informal care arrangements has a bearing on the psychological health of care recipients. Individuals in more reciprocal relationships and in relationships where they felt respected and valued were less likely to be depressed than their counterparts.

"Easing the way" for spouse caregivers of individuals with dementia: a pilot feasibility study of a grief intervention

Ott, C. H., Kelber, S. T., & Blaylock, M. (2010)

A multicomponent intervention targeting grief symptoms in spouse caregivers of individuals with dementia was pilot tested in this feasibility study. Twenty spouse caregivers completed the study within the 5-month protocol. The five-component intervention, deduced from Meuser, Marwit, and Sanders' Dementia Caregiver Grief Model and tailored to participants' grief, mental health, and learning needs, included supportive grief counseling, emotional support, education, skill building, and referral to community resources. Significant changes were found from baseline to intervention completion for the measures of grief, depression, anxiety, positive states of mind, and self-efficacy, resulting in a moderate effect size of -0.43 for grief to a large effect size of -2.40 for anxiety. Increases in quality of life and decreases in grief persisted at the 8-month follow up for caregivers who continued to provide care in the home. The Easing the Way intervention protocol is a promising caregiver program that warrants further testing in a randomized controlled study.

"Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative

Ducharme FC, Levesque LL, Lachance LM, Kergoat M-J, Legault AJ, Beaudet LM, et al. (2011)

Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. Results: The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. Implications: This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet. Adapted from the source document.

"Left alone with straining but inescapable responsibilities": Relatives’ experiences with mental health services

Weimand BM, Hedelin B, Hall-Lord M-L, Sällström C. (2011)

Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.

"My Friends are my Family‘: an argument about the limitations of contemporary law's recognition of relationships in later life."

Westwood, S. (2013)

Current UK law and social policy privilege the conjugal couple, biological and filial relationships. Friendship remains on the margins of regulatory recognition. Yet friendship is of growing significance in contemporary social relationships. This is particularly so for older people, especially for older lesbian, gay and bisexual people. This paper explores the place of friendship in key areas of law and social policy relating to older age: pensions, benefits and inheritance; medical decision making; mental health and mental capacity legislation; and social care policy. The extent to which contemporary law is keeping up with changing relationship forms will be considered, together with its implications for equality in later life

"Non-palliative care" - a qualitative study of older cancer patients' and their family members' experiences with the health care system.

Fjose M., Eilertsen G., Kirkevold M., Grov EK. (2018)

BACKGROUND: Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
METHODS: We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
RESULTS: The main theme is "Non-palliative care" - health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
CONCLUSION: The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.

"Om åtminstone blöjleveranserna kunde komma i tid!". Vårda och vårdas. Äldre och deras anhöriga, två undersökningar år 2000, utförd på uppdrag av Socialstyrelsen

Sundström, G. (2001)

Den riksrepresentativa undersökning av hemmaboende äldre 75+ som gjordes våren 2000(Socialstyrelsen 2000a) är utgångspunkten för föreliggande två studier av äldre som själva är anhörigvårdare respektive av äldre som får anhörigvård.Av äldre som själva är anhörigvårdare har i föreliggande undersökning enbart personer som vårdar någon i det egna hemmet valt att medverka; nästan alla är make/maka till den vårdade. Detta innebär en något beskuren bild av äldre som omsorgsgivare, men troligen en adekvat belysning av äldre som vårdar sin partner. Bland äldre som fick mycket hjälp-omsorg-vård intervjuades anhöriga, av dessa var drygt hälften en maka-make. Totalt omfattar intervjuerna 56 personer (20 respektive 36 i dessa två grupper). I båda kategorierna är likheterna mer slående än skillnaderna.De flesta anhörigvårdare är själva äldre. Inte så få är män, särskilt inom äktenskapets ram. När makar står för omsorgen har vården ofta pågått länge och för en del har den medfört nedsatt hälsa.Vårduppgifterna är ibland fysiskt och/eller psykiskt betungande och medför ofta inskränkningar i den anhöriges sociala liv. Få av dem har arbete och än färre har tagit ledigt för att vårda. De vårdade har vanligen mycket nedsatt funktionsförmåga och är helt beroende av vårdaren, något som är tydligt belastande. Ganska många är drabbade av demenssymptom eller andra kognitiva nedsättningar.Det mest påtagliga är att så få använder offentlig hjälp. De som har sådan, har ofta mycket få insatser. De använder ett fåtal hemhjälpstimmar eller enbart annan hemtjänst såsom larm, matlåda och/eller färdtjänst. Många har dock fått sina bostäder anpassade och några får omfattande offentlig hjälp och är uttalat nöjd med den, men många av dem som inte har offentlig hjälp är också nöjda. Minst en tredjedel av anhörigvårdarna har uttalade önskemål om offentligt stöd.Manliga anhörigvårdare använder sig oftare av offentlig hjälp (hemhjälp m.m.) än kvinnliga anhöriga. Många av vårdarna får också hjälp av andra anhöriga, när sådana finns att tillgå. Påfallande många står dock utan stöd från andra anhöriga, bland de yngre är många enda barnet eller det enda tillgängliga barnet. Totalt sett bor nästan alla vårdare tillsammans med eller mycket nära den de hjälper. De vårdade oftast färre anhöriga (partner, barn, syskon, annan släkt) än den äldre befolkningen i allmänhet.Mycket få vårdare efterlyser spontant något offentligt stöd. Endast hälften efterfrågar hjälp när de får ta ställning till konkreta listor över tänkbara stödformer. De som önskar hjälp vill endera ha "avlastning" och/eller rehabilitering respektive (mer) hjälp med hushållet. Endast en sjättedel avvisar offentligt stöd i alla former. När anhöriga formulerar önskemål är de ofta mycket blygsamma: "om åtminstone blöjleveranserna kom i tid!". De offentliga insatserna framstår ibland som fantasilösa, otydliga och inflexibla. Studien fann också flera exempel på anmärkningsvärda missförstånd. Uppenbart är att många av dessa anhörigvårdare har (fått) föga information om stödmöjligheter m.m.Anmärkningsvärt många anhöriga (ca. hälften) önskar ekonomisk ersättning för sina insatser, några har redan små belopp för det de uträttar. När anhörigvårdare begärt ersättning har det för flera avslagits utan motivering eller på tveksamma grunder.Trots allt är närmare hälften i stort sett nöjda med sin situation och med den offentliga hjälp de får. Undersökningen finner åtskilliga exempel på illa fungerande offentlig hjälp, men också flera goda exempel på välfungerande insatser med mycket nöjda vårdtagare och anhöriga. Knappt hälften av vårdarna är intresserade av kontakt med frivilligverksamhet, något som ett fåtal redan har. Dessa är i allmänhet tydligt nöjda med detta stöd.

"Parent Management Training as a Treatment for Children with Oppositional Defiant Disorder Referred to a Mental Health Clinic."

Costin J (2007)

Parent Management Training (PMT) has been shown to be an empirically supported intervention in ameliorating antisocial behaviour problems. Less evidence is available to demonstrate the effectiveness of PMT in routine public-health-oriented community-based settings where the presence of comorbid disorders complicates the picture. The current study was undertaken to investigate the effectiveness of PMT as a treatment for primary school-age children with Oppositional Defiant Disorder (ODD) and comorbid disorders offered by clinical staff as part of clinical practice. An Australian sample of 94 parents of children diagnosed with ODD by structured interview was provided with eight sessions of PMT. Measures used to assess changes in child behaviour symptoms were the Eyberg Child Behavior Inventory, the Parent Stress Index Child Domain, and the Child Behavior Checklist. Clinically relevant and statistically significant outcome results were found at posttreatment and at 5 months follow-up. There was a reduction in child symptomatology but no evidence of any effect of comorbidity on outcome. These findings are important for the clinical field as they show that PMT is a robust intervention suitable for routine clinical practice even when comorbid disorders are present in addition to ODD.

"You don't want to burden them": older adults' views on family involvement in care

Cahill, E., Lewis, L. M., Barg, F. K., & Bogner, H. R. (2009)

Burden emerged as an important concept among older adults in a study of how older adults interact with their families around care. The authors conducted 50 semistructured interviews with adults older than the age of 65 years and a spouse or adult child. The sample was stratified by ethnicity thus giving the opportunity to explore both ethnic similarities and differences. Older adults who expressed the concept of burden were more likely to be White compared with older adults who did not express burden. Older respondents discussed burden in relation to not wanting to complicate the busy lives of adult children, guilt about health problems, and concern that children were overly worried about the care of their older family member. The expression and meaning of burden differed according to ethnicity. This study has implications for practice and policies to meet the needs of families and promote the independence of older persons.

“Generalised anxiety disorder in elderly patients: epidemiology, diagnosis and treatment options”

Flint, A. J. (2005)

Generalised anxiety disorder (GAD) is characterised by at least 6 months of excessive uncontrollable worry accompanied by symptoms of motor tension and vigilance and scanning. As with other anxiety disorders, GAD is less prevalent in older adults than younger adults. GAD has a high level of comorbidity with other psychiatric disorders and this has a bearing on estimates of its prevalence. GAD that is comorbid with another psychiatric disorder has a period prevalence of approximately 4% in community-dwelling older people. On the other hand, 'pure' GAD is less common, with a period prevalence of approximately 1%. Pure GAD in late life is a fairly even mix of chronic cases that began earlier in life and cases starting for the first time in later life. The most frequent and consistent finding regarding late-life generalised anxiety is its high level of comorbidity with major depression. There are few longitudinal data pertaining to the temporal association of generalised anxiety and major depression in late life, but the data that do exist suggest that the anxiety is frequently symptomatic of the depression. If generalised anxiety occurs exclusively during episodes of major depression, a separate diagnosis of GAD is not warranted. Cognitive behaviour therapy (CBT) is the most frequently studied psychological treatment for GAD. Although CBT is more effective than a wait-list control condition, it is not more effective than nondirective therapies in late-life GAD. Furthermore, a standard course of CBT appears to be less efficacious for GAD in older adults than younger adults. Further research is needed to develop more efficacious and specific forms of psychotherapy for late-life GAD. The three classes of medications that are most commonly used for GAD are: (i) antidepressants; (ii) benzodiazepines; and (iii) buspirone. Antidepressant medication is the pharmacological treatment of choice for most older adults with generalised anxiety. When generalised anxiety is secondary to an episode of major depression, the selection of an antidepressant is guided by the same principles that apply to treatment of nonanxious depression. Antidepressant medication is also effective for GAD in the absence of an episode of major depression. In this situation, citalopram and venlafaxine have been found to be efficacious in older people. Data from studies of mixed-aged patients suggest that escitalopram, paroxetine and trazodone may also be beneficial in late-life GAD. Despite their widespread use in older persons with anxiety, benzodiazepines have a limited role in the treatment of GAD in the elderly. If a benzodiazepine is initiated, pharmacokinetic considerations favour the use of either lorazepam or oxazepam. Buspirone also has a more limited role than antidepressants in the treatment of late-life GAD.

“It makes me feel like good inside because I helped him do stuff” – Perceptions of psychological well-being in adolescents providing dementia care

Perion, Jennifer Steiner, Victoria Ames, April (2021)

According to a 2018 report by the Alzheimer's Association, an estimated 250,000 children help support a family member with dementia, but few studies exist that describe their experience as family carers. This qualitative descriptive study sought to understand the perceived psychological well-being of adolescents who assist with providing care to family members with dementia. Eleven adolescents ages 12 to 17 caring for older non-parental family members with dementia in northwest Ohio participated in one of three focus group discussions. An adult family member was surveyed about family background and level of assistance provided. The data from the two questionnaires were analyzed using descriptive statistics. Focus group transcripts were analyzed using thematic content analysis. Thematic analysis revealed six themes related to psychological well-being: 1) Feeling compassion for the family member; 2) Finding connection through fun, humor, and mutual affection; 3) Helping even though it is not always pleasant; 4) Feeling good inside about helping family "do stuff"; 5) Believing no one can do it like family; and 6) Reflecting that it is just something that they do. The findings of this study provide new insight into adolescents' experiences of dementia family care and how it affects their psychological well-being. An examination of the themes suggests that secondary caring roles were mostly positive in nature and may help adolescents forge closer family relationships, find opportunities for personal growth and development, and overcome challenges to grow more confident. These findings may also suggest ways to include adolescents in family care as a means of positive growth opportunities. •Dementia caregiving was mostly a positive experience for adolescents.•Family obligations elicited feelings of connectedness.•Adolescents found ways to overcome feelings of aversion when providing care.•Emergent themes were consistent with Ryff's dimensions of physiological well-bring.•Results may be used to develop supportive and enriching programs for families.

“Role of depressive symptoms and comorbid chronic disease on health-related quality of life among community-dwelling older adults”.

Gallegos-Carrillo, K., Garcia-Pena, C., Mudgal, J., Romero, X., Durán-Arenas, L., & Salmeròn, J. (2009)

OBJECTIVE:
This study examined the influence of depressive symptoms on health-related quality of life (HRQOL) among community-dwelling older adults suffering from various categories of chronic comorbidity.
METHODS:
A population-based survey in adults aged 60 years or more was conducted within a random sample of 1085 beneficiaries of the Mexican Institute of Social Security in Mexico City. Depressive symptoms were evaluated with the 15-item Geriatric Depression Scale, and chronic comorbidity was determined with self-reports concerning prior medical diagnoses and the HRQOL Short Form-36 health survey. We carried out a stratified analysis by comorbidity category, evaluating the impact of depressive symptoms on HRQOL through an analysis of variance and modeling the independent association of depression symptoms with HRQOL using multiple linear regression analyses adjusted for comorbidity and other covariables.
RESULTS:
HRQOL scores were low in the presence of depressive symptoms, while their impact increased when chronic diseases were also present. The group with the poorest HRQOL was older adults suffering from both depressive symptoms and two or more chronic diseases (P<.05). The stratified analysis by comorbidity and multivariate analysis, adjusted for covariables, indicated that depressive symptoms and comorbidity had cumulative negative effects on HRQOL.
CONCLUSION:
The HRQOL of older adults deteriorated when depressive symptoms were present and decreased even further with the simultaneous occurrence of chronic illnesses. Identifying depression symptoms-either alone or along with chronic conditions-is crucial for implementation of measures aimed at improving elderly people's HRQOL.

“Speech After Long Silence”: The Use of Narrative Therapy in a Preventive Intervention for Children of Parents with Affective Disorder

Focht-Birkerts, L., & Beardslee, W.R. (1996)

This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural "canons" regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, "schematic base" of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.

”Alla behöver ju bra habilitering …” småbarnsföräldrars uppfattningar av stöd från habiliteringen

Carlhed, Carina (1998)

Denna studie ingår som en del i ett större forskningsprojekt som bedrivs vid institutionen för Samhälls- och Beteendevetenskap vid Mälardalens högskola. Projektet syftar till att öka kunskapen om familjers samarbete med habiliteringsverksamhet. Projektledare är docent Eva Björck-Åkesson. I denna studie har fokus riktats mot föräldrar till barn med funktionshinder. Syftet har varit att belysa uppfattningarna ur deras eget perspektiv, men ambitionen har också omfattat ett vidare perspektiv, att beskriva föräld-rarnas önskemål om hur de vill bli bemötta och hur de vill att stödet ska utformas. Syftet kan kortfattat beskrivas i följande fråga: Hur uppfattar föräldrar som har små barn med funktionshinder det stöd de får från habiliteringen och hur vill de att stödet ska utformas i framtiden?Studien har en explorativ, hermeneutisk ansats och har sin utgångspunkt i ett föräldraperspektiv. De teoretiska utgångspunkterna är utifrån ett utvecklingsekologiskt synsätt och i empowermentteori. Resultaten har speglats mot tidigare studier inom området avseende familje-/närmiljöorienterat arbetssätt inom habilitering/intervention och inom området "Early Intervention". Vid genomförandet av studien prövades också möjligheten att kombinera en hermeneutisk ansats med fenomenografisk metod. Denna kombination har visat sig ge en användbar praktisk vägledning i tolknings- och analysarbetet.Studiens resultat visar att det finns en skillnad i hur föräldrarna uppfattar det stöd de får i dag och hur de önskar att stödet skulle ges. Uppfattningar av stöd från habiliteringen beskrivs i kategorier som omfattar organisatoriska faktorer, habiliteringsteamets arbetssätt och möten med enskilda professionella. Resultatet redovisas bl.a. i en tabell som beskriver en önskad och uppfattad situation, även föräldrarnas uppfattningar avseende andra formella/informella system beskrivs. Resultaten visar att intentionerna i bl.a. LSS (Lagen om särskilt stöd och service, SFS 1993:387) inte implementerats, brister i information och samordning av insatser tycks vara två av de bidragande orsakerna. Det finns således en skillnad i lagtext och verklighet. Rättigheter skall följas åt av resurser, vilket inte är fallet för de medverkande föräldrarna. Arbetssättet hos habiliteringen är inte familje/närmiljöorienterat och följaktligen riktas insatser mot barnet i första hand. Insatserna har inte baserats på behov i familjernas vardag i någon större utsträckning, utan föräldrarna har snarare blivit hänvisade till "det som finns", både när det gäller tillgänglig specialistkompetens och ett fast utbud av aktiviteter. Någon större grad av "em-powerment" har inte dessa föräldrar fått vara med om och de ser sig inte själva som samarbetspartners i habiliteringsprocessen.I mötet ställs speciella krav enligt föräldrarna, man behöver t.ex. tätare kontakter och en mer aktiv hjälp och önskar mötas av en större lyhördhet och flexibilitet. Brister i kommunikation hos både föräldrar och personal samt ett lågt visat intresse och initiativtagande hos personalen verkat ha varit ett hinder för detta. Resultaten pekar på ett behov av utbildning / fortbildning för både personal och föräldrar i gemensam problem-lösning. Det finns viktiga faktorer hos både personal och föräldrar som bidrar till ett gott samarbete, t.ex. en vilja att arbeta familjeorienterat, attityder, kommunikationsförmåga etc. Betydelsen av goda relationer, ett respektfullt bemötande och noggrann uppföljning är också viktigt för samarbetet. Habiliteringens mål bör vara klart formulerat och filosofin/värderingarna i verksamheten bör överensstämma med verkligheten. Det finns enligt dessa resultat en diskrepans mellan upplevt behov och tillgänglig service.Slutligen presenteras en modell som beskriver graden av empowerment som ett resultat av en ömsesidig påverkansprocess i mötet mellan föräldrar och habiliteringspersonal

”Are there any clinical characteristics of depression in elderly people that could be useful for case finding in general practice?”

Fröjdh, K., Håkansson, A., & Jansson, S. (2003)

OBJECTIVES:
The aim of this study was to identify clinical characteristics of depression in elderly people that could be useful for case finding in general practice.
DESIGN:
A cross-sectional study of clinical characteristics through review of medical records.
SETTING:
Herrhagen health centre, Karlstad, Sweden.
SUBJECTS:
Seventy-one persons with a high depressive score in a screening of depressive symptoms and an age-matched and sex-matched control group of 138 persons with a low depressive score.
RESULTS:
The high depressive score group had an increased relative risk for "mental health problems" (RR 3.4; CI 95% 1.7-7.2), "many contacts with the health care centre" (> or = 14/3 years) (RR 2.9; CI 95% 1.4-6.1), and prescriptions of benzodiazepines (RR 1.7; CI 95% 1.0-2.9). Two-thirds of those in the high depressive score group had at least one of these characteristics. However, three-quarters of those with any of these characteristics had a low depressive score. In our population of elderly people with an estimated prevalence of 10.2% the positive predictive value would be 21% and the negative predictive value 95%.
CONCLUSION:
General practitioners should suspect a possible depressive disorder in elderly patients with mental health problems, with frequent contacts with the health centre or with prescriptions of benzodiazepines. Despite the high occurrences of these prominent clinical characteristics in the high-score group, they did not unfortunately have sufficient discriminatory power to be useful for case finding.

”Because we know our limits”: Elderly parents´ view on intergenerational proximity and intimacy

Hjälm, A. (2012)

From an intergenerational family perspective, geographical distance and proximity have been shown to affect interaction and the extent of help and support between generations. Geographical separation and nearness hence do not only influence the family per se, but might also concern the welfare state, not least in times of population ageing. This study concerns exchange and assistance between elderly parents living very close to an adult child, and is based on interviews with 14 elderly parents. The interviews revealed that help and support flowed in both directions between the close-living generations, but that from the perspective of the elderly some types of help were more acceptable than others to give and receive. Further, the interviews suggested that living close, albeit discussed as allowing extensive interaction and support, should not be understood as a sign of wanting or even accepting more extensive help from the close-living adult child.

”No, you don’t know how we feel”: Groupwork with children facing parental loss

Chowns, G. (2008)

Groupwork with bereaved children has become increasingly common. However, working with children anticipating potential bereavement has received much less attention. Similarly, research within this area in palliative care has been notable for two things - its paucity and its failure to address the perspective of the children themselves. The author, a palliative care social worker, turned to the action research paradigm for an approach that would more effectively engage with and illuminate these children's experiences, and undertook a collaborative inquiry - where the research is conducted with rather than for, on, or about the participants - with nine children aged from seven to fifteen. Collaborative inquiry raises - and challenges - many key issues in both research and groupwork, such as voice, power and identity, ethics and competence. This article addresses a number of these issues, with a particular focus on identity.

”Over the rainbow” a prevention group for bereaved children and families in a rural area

Miller, J.S. (2010)

Akademisk Avhandling

The death of a loved one is a difficult experience for a child. However, prior research has found several characteristics that put some children at a greater risk than others. This study examined the unique needs that rural communities face trying to provide services to bereaved children and their families. The primary purpose of this study was to evaluate the effectiveness of a one-day bereavement camp for children and families in a rural area who have lost someone close to them. Participants completed quantitative and qualitative measures designed to evaluate the group. The camp was offered on four occasions, but despite intensive recruitment only seven participants attended. Although the group was well-liked and beneficial to those who attended, the recruitment and attendance difficulties suggest this may be an inefficient use of time and money for the provision of bereavement services to the community. A follow-up study was created to investigate the barriers and possible solutions to aid future programs. Fourteen key informants in the community were interviewed to address this topic and grounded theory was utilized to examine the results. Findings were consistent with the difficulties for other rural mental health programming in regards to accessibility and acceptability. Rural core providers must be aware of these unique variables in rural culture that lead to barriers to treatment and determine which strategies fit best to meet the needs of individuals in these communities.

”Småbarnstiden tar ju aldrig slut.” Hur parrelationen påverkas av att vara förälder till ett barn med funktionsnedsättning inom autismspektrat

Högberg, Anette (2009)

Denna rapport redovisar en undersökning av hur män och kvinnor upplever att parrelationen har påverkats av att de fått ett barn med funktionsnedsättning inom autismspektrum. Studien tar fasta på vad detta kan innebära för familjen i stort, för parrelationen och för självbilden. Rollfördelning och beroende behandlas liksom relationer till släkt, vänner och nätverk. Även hur kompetens och stolthet kan växa fram. Området är outforskat, undersökningen har därför fått en explorativ inriktning. Metoden är halvstrukturerade intervjuer.

”So that´s how I found out I was a young carer and that I actually had been a carer most of my life”: Identifying and supporting hidden young carers

Smyth C, Blaxland M, Cass B. (2011)

A common theme in the literature on care-giving is the issue of 'hidden' carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a 'normal' familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain 'hidden' and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.

A brief measure of social support: practical and theoretical implications

Sarason IG, Sarason BR, Shearin N, Pierce GR. (1987)

Two studies leading to the development of a short form of the Social Support Questionnaire (SSQ) are reported. In Study 1 three items selected for high correlations with the total score (SSQ3) were administered to 182 university students together with several personality measures. SSQ3 had acceptable test-retest reliability and correlations with personality variables similar to those of the SSQ. Internal reliability was marginal although acceptable for an instrument with so few items. Study 2 employed three sets of data in developing a six-item instrument (SSQ6). The SSQ6 had high internal reliability and correlated highly with the SSQ and similarly to it with personality variables. The research findings accompanying the development of the short form social support measure suggest that perceived social support in adults may be a reflection of early attachment experience.

A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan

Shyu YI, Kuo LM, Chen MC, Chen ST. (2010)

Aim and objective.  To explore the long-term effects of a discharge-preparation programme targeting Taiwanese family caregivers of older patients with stroke.

Background.  Little is known about the effects of interventions for caregivers of patients with stroke in Asian and Chinese families.

Design.  A randomised experimental design was used.

Method.  Participants included 158 older patients with stroke (72 in the experimental group and 86 in the control group) and their family caregivers. A caregiver-oriented intervention programme was designed to increase caregiver preparedness, to enhance caregiver perception of balance between competing needs and to satisfy specific needs during the transition between hospitalisation and discharge. Long-term outcomes were measured by caregiver's health-related quality of life, quality of care, stroke patient's self-care ability, patient's health-related quality of life and service utilisation. Longitudinal data were analysed by the generalised estimating equation approach.

Results.  During the 12 months following discharge of older patients with stroke, caregivers in the experimental group provided significantly better quality of care (β = 0·45; p = 0·03) than the control group. Between the sixth–twelfth months following discharge, patients in the control group were more likely to be institutionalised than those in the experimental group (χ2 = 5·11; p = 0·03).

Conclusion.  Using a sample from Taiwan, this intervention programme succeeded in improving quality of care provided by family caregivers to older patients with stroke and in decreasing the likelihood of their institutionalisation.

Relevance to clinical practice.  Older Chinese patients with stroke and their family caregivers can benefit from an individualised programme that prepares caregivers for patient discharge. Similar programmes may be applicable to other countries with Chinese populations.

A cluster analysis of patients with schizophrenia in community care

Lora A, Cosentino U, Rossini MS, Lanzara D. (2001)

In 203 patients (aged 15–64 yrs) with schizophrenia, the authors identified different clusters of Ss on the basis of the severity of psychopathology, disability, and family burden. Patient measures included the Disability Assessment Schedule and the Brief Psychiatric Rating Scale. Family burden, including relatives' satisfaction with services provided, was evaluated with the Questionnaire for Family Problems. In the 1st cluster, patients' severity of illness was mild and their use of services low. In the 2nd, patients' disability was more severe; psychiatric symptoms were low in severity, family burden was moderate, and use of community services was more intensive. In the 3rd cluster, patients had serious disability and severe positive symptoms; their families suffered distressing burdens, and their use of hospital and community services was intensive. In the 4th cluster, patients' disability was very severe, negative symptoms were prominent, and relatives' burden was moderate; use of hospital services was frequent, and use of community services was less so. Findings suggest that improving responsiveness to the needs of the most seriously ill patients and their families is a central issue that requires further study and practical implementation. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial

Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J, et al. (2013)

BACKGROUND:
The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver.
OBJECTIVE:
To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective.
DESIGN:
A pragmatic, multicentre, cluster randomised controlled trial.
SETTING:
Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care.
PARTICIPANTS:
A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient.
INTERVENTION:
The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation.
MAIN OUTCOME MEASURES:
The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months.
RESULTS:
No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year.
CONCLUSIONS:
We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams.
TRIAL REGISTRATION:
Current Controlled Trials ISRCTN49208824.
FUNDING:
This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information.

A comparative study of nursing staff, care recipients´ and their relatives´ perceptions of quality of older people care

Hasson, H., & Arnetz, J. E. (2010)

Background.  Comparisons of different stakeholders' ratings of the quality of older people care can help to drive quality improvement.

Aim.  The aim was to compare staff, older care recipients' and their relatives' quality of care ratings.

Design.  Cross-sectional questionnaire surveys in 2003 and 2004, using a repeated measures design on an organizational level.

Methods.  Nursing staff, care recipients and relatives in two older people care organizations were included. The ratings of an overall quality grade, information, activities, general care and staff skills were compared between the respondent groups.

Results.  Care recipients in both organizations rated the overall quality grade significantly higher than nursing staff and relatives. Staff ratings of the information given to care recipients were significantly more positive than care recipients' and relatives' ratings. All three groups gave lowest ratings to the quality of activities offered to care recipients, with lowest ratings from nursing staff.

Conclusions.  Concurrent measurements of staff, care recipients and relatives' care quality perceptions can provide a broad evaluation of an organization's strength and limitations.

Relevance to clinical practice.  Staff, care recipients' and relatives' perceptions can be useful for older people care organizations and decision makers in developing care processes and outcomes of care.

A Comparison of the Lifetime Economic Prospects of Women Informal Carers and Non-carers, Australia, 2007

Nepal B, Brown L, Ranmuthugala G, Percival R. A (2011)

Informal care provided at home to family members with a disability is a major part of the disability and aged care system in Australia. Using data from the 2007 Household Income and Labour Dynamics in Australia survey, this study provides an updated comparison of the financial wellbeing, or lack thereof, over the working life of women primary carers and non-carers. This study focuses on selected groups of primary carers and non-carers disaggregated by partnership status, level of education and self-assessed health status. While women primary carers tend to be more financially disadvantaged than non-carers, having a post-school education and being in good health contribute positively to bridge the gaps.

A conceptual framework for examining the promise of the NORC program and Village models to promote aging in place

Greenfield , E. A., (2012)

A growing paradigm shift emphasizes efforts to promote aging in place not only by helping aging individuals and families, but also by addressing and engaging communities. This paper explores the idea of developing community supports for aging in place by examining two models that incorporate this approach into practice: Naturally Occurring Retirement Community Supportive Service Programs (NORC programs) and Villages. Drawing on research regarding social–relational aspects of communities and later-life health and well-being, we present an integrative conceptual framework positing three categories of activities and services (civic engagement and empowerment activities; social relationship building activities; services to enhance access to resources)–as well as the initial outcomes and intermediate outcomes–through which the NORC program and Village models potentially achieve their long-term goal of promoting aging in place. Based on this framework, we conclude with directions for future research on community initiatives that support aging in place.

A conceptual framework of outcomes for caregivers of assistive technology users

Demers, L., Fuhrer, M. J., Jutai, J., Lenker, J., Depa, M., & De Ruyter, F. (2009)

Abstract
OBJECTIVE: To develop and validate the content of a conceptual framework concerning outcomes for caregivers whose recipients are assistive technology users.
DESIGN: The study was designed in four stages. First, a list of potential key variables relevant to the caregivers of assistive technology users was generated from a review of the existing literature and semistructured interviews with caregivers. Second, the variables were analyzed, regrouped, and partitioned, using a conceptual mapping approach. Third, the key areas were anchored in a general stress model of caregiving. Finally, the judgments of rehabilitation experts were used to evaluate the conceptual framework.
RESULTS: An important result of this study is the identification of a complex set of variables that need to be considered when examining the experience of caregivers of assistive technology users. Stressors, such as types of assistance, number of tasks, and physical effort, are predominant contributors to caregiver outcomes along with caregivers' personal resources acting as mediating factors (intervening variables) and assistive technology acting as a key moderating factor (effect modifier variable).
CONCLUSIONS: Recipients' use of assistive technology can enhance caregivers' well being because of its potential for alleviating a number of stressors associated with caregiving. Viewed as a whole, this work demonstrates that the assistive technology experience of caregivers has many facets that merit the attention of outcomes researchers.

A constructionist discourse on resilience

Ungar, M. (2004)

An ecological approach to the study of resilience, informed by Systems Theory and emphasizing predictable relationships between risk and protective factors, circular causality, and transactional processes, is inadequate to account for the diversity of people's experiences of resilience. In contrast, a constructionist interpretation of resilience reflects a postmodern understanding of the construct that better accounts for cultural and contextual differences in how resilience is expressed by individuals, families, and communities. Research supporting this approach has demonstrated a nonsystemic, nonhierarchical relationship between risk and protective factors that is characteristically chaotic, complex, relative, and contextual. This article critically reviews research findings that support an ecological perspective and explores the emerging literature that informs a constructionist approach to the study of resilience. It will show that an alternate constructionist discourse on resilience greatly enhances our understanding of resilience-related phenomena and our approach to interventions with at-risk youth populations.

A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse

Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al. (2014)

Objective: Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design. Method: Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization. Results: As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers. Conclusion: Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse

Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al. (2014)

OBJECTIVE:
Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design.
METHOD:
Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization.
RESULTS:
As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers.
CONCLUSION:
Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed.

Barn och unga i familjer med missbruk – vägledning för socialtjänsten och andra aktörer

Socialstyrelsen (2009)

Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.

Barn och unga i familjer med missbruk: vägledning för socialtjänsten och andra aktörer

Socialstyrelsen (2009)

Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.
Alla goda krafter behövs
De som möter föräldrar med missbruksproblem har ett ansvar för att försäkra sig om att barnen får adekvat stöd utifrån sina behov. Det är viktigt att yrkesverksamma inom missbruksvården särskilt uppmärksammar om det finns barn som påverkas av den vuxnas missbruksproblem. Men även de generella verksamheterna som riktar sig till alla barn och unga kan ha betydelse. Trygga och lyssnande vuxna i förskola, skola, fritidsverksamhet och föreningsliv kan bli viktiga stödjande personer och förebilder utanför familjen som kan få en avgörande positiv betydelse. De har också ett ansvar att anmäla till socialtjänsten om det finns oro för att barnet eller den unga far illa. Det är också viktigt att uppmuntra föräldrar att ansöka hos socialtjänsten om man bedömer att barnet eller den unga behöver mer stöd och hjälp.
Om socialtjänsten får en anmälan eller en ansökan, syftar en allsidig utredning, om barnets eller den ungas behov, familjens och nätverkets förutsättningar, till att komma fram till hur barnet eller den unga och familjen bäst ska kunna stödjas. Stödet kan ges inom socialtjänstens ram och av andra aktörer som har speciella verksamheter för dessa barn och unga. Flera ideella organisationer är aktiva på det här området.
Trots att de här barnen och ungdomarna har uppmärksammats särskilt i statliga utredningar och rapporter många gånger under de senaste decennierna, finns det mycket i det samlade stödet till dem som kan förbättras och samordnas. Ett bekymmer är att det saknas tillförlitlig forskning om effekterna av olika insatser.
En fördel med att det finns olika aktörer är att barn och unga i dessa familjer kan nås på olika sätt. Eftersom missbruksproblem fortfarande kan vara skambelagt drar sig många familjer för att söka hjälp. För en del kan det vara lättare att vända sig till en ideell organisation för hjälp och stöd än till myndigheter. Precis som när det gäller andra problem är det viktigt att det finns olika typer av stöd och hjälp till barn och unga som lever med missbruk i familjen.
Läsanvisning
Vägledningen vänder sig till såväl socialtjänsten som andra aktörer, som möter barn och unga i familjer med missbruk. De olika kapitlen har olika relevans för olika aktörer. Vissa upprepningar förekommer.
Kapitlet Att växa upp med missbruk i familjen ger en sammanfattning av vad man vet om omfattningen, konsekvenserna samt risk- och skyddsfaktorer. Det bör vara av intresse för alla läsare.
Kapitlet Att upptäcka att barn lever med missbruk i familjen riktar sig till alla instanser som på ett eller annat sätt kommer i kontakt med barn och unga och deras föräldrar. Det tar upp tecken på barns och ungas svårigheter, olika verksamheters ansvar, vikten av samverkan och anmälningsplikten.
Kapitlet Att bedöma barns och ungas behov riktar sig främst till socialtjänsten, men kan också vara av intresse för andra aktörer som information om socialtjänstens uppgift och utredning.
Kapitlet Stödinsatser handlar om betydelsen av helhetssyn och att insatserna behöver bygga på kunskap om risk- och skyddsfaktorer. Det ger också en beskrivning av olika stöd- och hjälpinsatser, inom socialtjänsten och i andra verksamheter.
I kapitlet Vilka insatser är effektiva? görs en kort genomgång av kunskapsläget när det gäller resultatet av olika insatser och metoder. Detta kapitel är relevant för alla aktörer.
I kapitlet Att dokumentera och följa upp insatser och verksamhet ges råd kring dokumentation och lokala uppföljningar. Syftet är att inspirera till att ständigt förbättra och utveckla den egna verksamheten och samtidigt successivt ge ett allt bättre kunskapsunderlag för valet av bästa möjliga insats för de barn och unga som behöver stöd och hjälp. Det riktar sig till alla utförare – såväl inom socialtjänsten som inom ideell verksamhet och hos andra huvudmän. Slutligen förs ett kortfattat resonemang om kostnadsaspekter av att satsa på stödinsatser för barn och unga vilkas föräldrar har missbruksproblem.

Barn och unga med medfödda funktionsnedsättningar – Behovsanalys inklusive resultat från Brukardialogberedning 3

Sand, C. (2013)

Målgruppen för behovsanalysen är barn och unga med medfödd funktionsnedsättning, som
har behov av planerade och från flera kompetensområden sammansatta åtgärder. Det vill säga
barn och unga som ingår i habiliteringens uppdrag. Exempel på några av de större grupper
som får insatser inom habiliteringen är cerebral pares, ryggmärgsbråck, muskelsjukdomar,
flerfunktionsnedsättning, utvecklingsstörning, missbildningssyndrom och autismspektrumtillstånd.
De behov som finns inom målgruppen är många gånger komplexa och flertalet har
behov av insatser från flera olika delar av hälso- och sjukvården men också av kommunen och
Försäkringskassan. Frågeställningar som behandlas i analysen är information och stöd,
tillgången till insatser, hjälpmedel och specialistläkare, intern och extern samverkan, fast
namngiven kontaktperson, vårdgaranti och likvärdig vård.
Utgångspunkten för svensk folkhälsopolitik och funktionshinderspolitik är principen om alla
människors lika värde och lika rätt, som även återfinns i barnkonventionen och i konventionen
om rättigheter för personer med funktionsnedsättning. Sedan 1997 finns en etisk plattform
med 3 grundprinciper som ska ligga till grund för prioriteringar inom hälso- och sjukvård i
Sverige, människovärdesprincipen, behovs- och solidaritetsprincipen och kostnadseffektivitetsprincipen.
I hälso- och sjukvårdslagen anges 4 prioriteringsgrupper inom
sjukvården, där vård av sjukdomar som utan behandling leder till varaktigt invalidiserade
tillstånd eller för tidig död och habilitering är högt prioriterat.
I nuläget saknas nationella riktlinjer för behovsgruppen. Vad gäller nationella kvalitetsregister
medverkar landstinget i CPUP, uppföljningsprogram av rörelseapparaten för barn och unga
med cerebral pares och i HabQ, kvalitetsregister för habilitering. HabQ startade som ett
kvalitetsregister för barn och unga med cerebral pares, 2011 inkluderades barn med autism.
Målet är att följa alla barn och ungdomar som får insatser genom habiliteringens verksamhet.
I landstinget finns vårdprocessprogram för ryggmärgsbråck och neuropsykiatri, barn och
unga.
Cirka 2 500 personer omfattas av habiliteringens insatser i länet, varav 1 600 är barn och
unga. Inom landstinget finns 3 enheter för barn- och ungdomshabilitering, vilka är olika
uppbyggda och ingår i närsjukvården i respektive länsdel. Det ökade inflödet av barn och
unga med neuropsykiatrisk problematik de senaste åren har inneburit ett ökat tryck på
habiliteringens verksamheter. Enligt verksamhetsföreträdare har det inneburit en viss
förskjutning av resurser till förmån för utredning och behandling inom neuropsykiatri, vilket
inneburit en viss undanträngningseffekt för övriga grupper inom habiliteringen. För att
hantera det ökade behovet av neuropsykiatrisk utredning och behandling har verksamheterna
även tagit till olika lösningar i samverkan med barn- och ungdomspsykiatrin i de tre
länsdelarna.
Barn- och ungdomshabiliteringen har under flera år haft brist på specialistläkare. Hösten 2012
genomförde länets barn- och ungdomshabiliteringar och barnkliniker en riskanalys gällande
bristen på specialistläkare inom barn- och ungdomsneurologi och habilitering. Riskanalysen
har bland annat lett till att 2 strategiska block för ST-läkare med inriktning neurologi inrättas
2014 som en gemensam satsning mellan habiliteringesenheterna och barnklinikerna.
8
Under våren 2013 genomförde brukardialogberedning 3 intervjuer med barn och unga med
medfödda funktionsnedsättningar samt deras föräldrar. Som förälder till ett barn med
komplexa behov är det viktigt att bli bemött på ett bra sätt i kontakterna med hälso- och
sjukvården och andra myndigheter. Det är viktigt att få tillgång till stöd och till relevant
information om diagnosen eller funktionsnedsättningen i ett tidigt skede. Det är också viktigt
att hela familjen har tillgång till olika former av stödinsatser under lång tid.
För många föräldrar tar det lång tid att vänja sig vid den nya situationen och man ägnar
mycket tid åt saker som normalt inte ingår i föräldrarollen. Det kan handla om att barnet långt
upp i ålder behöver lika mycket omsorg och passning som när han eller hon var nyfödd.
Mycket tid och pengar läggs på träning, anpassning av miljön eller att skjutsa till olika
specialaktiviteter. Oräkneliga timmar läggs på att samordna alla kontakter kring barnet med
hälso- och sjukvården, kommunen, assistenter, försäkringskassa och så vidare.
Behovet av habiliterande insatser och hjälpmedel är ofta stort hos barn och unga som har en
funktionsnedsättning. När det gäller habiliterande insatser upplever en del att dessa tenderar
att minska i takt med barnets ålder, trots att behovet är oförändrat. Många upplever även att
det är långa väntetider för utredningar. Flera synpunkter berör brister inom hjälpmedelsområdet.
Att det är långa leveranstider på nya hjälpmedel och att det tar tid att få hjälpmedel
reparerade. Man anser också att hjälpmedelssortimentet är begränsat och att systemet med
särskild prövning är krångligt och byråkratiskt. Ytterligare synpunkter handlar om bristande
tillgång till information om vilka insatser och hjälpmedel som finns att få. Många upplever att
de får söka information själva. Men det är inte lätt att leta efter information när man inte vet
vad man ska leta efter eller fråga om. Sökprocessen blir omständig och tidsödande.
Utbudet av habiliterande insatser och metoder och hjälpmedelssortiment kan se olika ut i olika
landsting och regioner. Något som de intervjuade upplever som orättvist och föräldrarna anser
att alla barn borde ha samma förutsättningar var i landet man än bor. Bristande tillgång till
specialistläkare upplevs som ett annat problem och flera uttrycker en oro för att deras barn
inte ska få tillgång till viktiga insatser som de har behov av.
Utifrån den etiska plattformen är barn och unga med medfödda funkitonsnedsättningar en
högt prioriterad grupp i samhället. Deras behov av god vård i hela vårdprocessen behöver
säkerställas för att minska risken för komplikationer och förbättra den långsiktiga prognosen
och därmed livskvaliteten för barnen.
De utvecklingsområden som identifierats i behovsanalysen finns inom områdena: Information
och stöd, Samverkan/samordning och kontinuitet och Tillgänglig, likvärdig och säker vård.

Barn och ungas hälsa, vård och omsorg

Socialstyrelsen (2013)

Barns och ungas hälsa och sociala förhållanden i Sverige är goda, även jämfört med andra välfärdsländer. Detta gäller i synnerhet spädbarn och skolbarn. Exempelvis är barnadödligheten i dessa åldrar bland de absolut lägsta i världen. Barns och ungas fysiska miljö är god ur ett internationellt perspektiv, med låg förekomst av miljörelaterad sjuklighet, till exempel orsakad av luftföroreningar. Sverige ligger dock inte lika mycket i framkant när det gäller de lite äldre barnen. Symtom på ett nedsatt psykiskt välbefinnande (ledsenhet, sömnsvårigheter, huvudvärk med mera) är vanligare bland svenska 15-åringar än i andra länder. Narkotikabruk är mindre vanligt bland svenska unga medan alkoholkonsumtionen är på en genomsnittlig europeisk nivå.

I vårt land har hälsoutvecklingen bland unga inte sett likadan ut som för andra åldersgrupper. Exempelvis har risken att avlida i åldersspannet 15–29 år varit oförändrad de sista 15 åren, när dödligheten har minskat i alla andra åldrar. Självmorden minskar inte bland ungdomar, vilket de gör för andra åldersgrupper. Dödligheten i olycksfall har också varit oförändrad, men minskat de allra senaste åren. Trots det är dödligheten hos unga bland de lägsta i Europa, men för ungdomsgruppen ligger flera länder bättre till.

Sverige – tillsammans med andra skandinaviska länder och Nederländerna – tillhör de länder där ekonomisk utsatthet bland barnfamiljer är minst omfattande. Det är också mycket ovanligt att svenska barn saknar grundläggande nödvändigheter som nya kläder, passande skor, tre mål mat om dagen, böcker eller leksaker med mera. Några förklaringar till detta är att svenska barnfamiljer ofta har två familjeförsörjare, att ensamstående föräldrar arbetar i högre grad och på transfereringar till stöd för barnfamiljer. Av betydelse är också att många välfärdstjänster är avgiftsfria för barn, som exempelvis sjukvård, tandvård, skola och skollunch

Barn och ungdomar med psykisk ohälsa – vem tar hand om dem?

Socialstyrelsen (2010)

På många håll saknas förebyggande och tidiga insatser för barn och ungdomar med psykisk ohälsa. Barnet riskerar att helt bli utan vård, vilket kan få livsavgörande konsekvenser. Anledningen till oklarheterna är att kommuner och landsting ger otydliga uppdrag eller inga uppdrag alls till verksamheterna.

Barn och ungdomar med rörelsehinder – deras uppfattningar om roller, relationer och aktiviteter

Skär, Lisa (2002)

Doktorsavhandling
Den forskning som hittills funnits vad gäller rörelsehindrade barn fokuserar nästan uteslutande på deras situation sett ur de vuxnas perspektiv. Men Lisa Skär tar sin utgångspunkt i att försöka förstå barnens och ungdomarnas värld utifrån deras eget perspektiv.
Det övergripande syftet med avhandlingen är att beskriva hur barn och ungdomar med rörelsehinder själva uppfattar sina roller, relationer och aktiviteter med jämnåriga och vuxna i olika miljöer.
Rörelsehindret i sig och olika miljöers otillgänglighet är två faktorer som försvårade för barnen och ungdomarna att delta i aktiviteter och därmed ha relationer med jämnåriga. Att använda rullstol eller kryckor är både tidskrävande och tar mycket energi av barnen - dessutom fungerar dessa hjälpmedel inte alltid i alla miljöer.
– Barn med rörelsehinder hinner inte alltid eller kan inte vara aktiva deltagare i olika aktiviteter. Samtidigt är det ofta är förutsättningen för att få kamrater, säger Lisa Skär.

Barn som anhöriga – Konsekvenser och behov när föräldrar har allvarliga svårigheter eller avlider

Socialstyrelsen (2013)

När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.

Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.

Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.

Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.

Barn som anhöriga – Konsekvenser och behov när föräldrar har allvarliga svårigheter, eller avlider

Socialstyrelsen (2013)

När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.

Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.

Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.

Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.

Barn som anhöriga till flykting- föräldrar med post-traumatisk stress – en systematisk litteraturstudie Rapport 6 från projektet ”Barn som anhöriga” från CHESS, Stockholms universitet/Karolinska Institutet

Hjern Anders & Klöfvermark Josefin (2017)

Detta är den sjätte rapporten i projektet "Barn som anhöriga", som genomförs av CHESS vid Stockholms universitet/Karolinska Institutet i samarbete med Nationellt kompetenscentrum anhöriga (Nka) på uppdrag av Socialstyrelsen. Inledningsvis ger rapporten en teoretisk översikt om barn som anhöriga till föräldrar med posttraumatisk stress. Därefter görs en systematisk granskning av den empiriska litteraturen om betydelsen av post-traumatisk stress hos flyktingföräldrar i exil för deras barns hälsa och välbefinnande.

Barn som anhöriga till patienter i vården – hur många är de? Nka Linnéuniversitetet Chess, Barn som anhöriga 2013:1.

Hjern A, Manhica H. (2013)

Den 1 januari 2010 infördes en ny lagstiftning angående hälso- och sjukvården ansvar att
ge information, råd och stöd till barn vars föräldrar har en allvarig psykisk eller fysisk
sjukdom inklusive missbruk, eller oväntat avlider. Den här rapporten syftar till att ge
övergripande bild av hur många barn som direkt berörs av denna nya lag.
Rapporten baseras i första hand på anonymiserade analyser av data om sluten vård på
sjukhus från Patientregistret under 1987–2008, och dödsfall i Dödsorsaksregistret under
1973–2008. Registerdata från Statistiska Centralbyrån har använts för att koppla föräldrar
till sina biologiska barn och definiera familjers sociala karaktäristika.
Av de barn som föddes 1987–89 hade 7,8 procent minst en förälder som vårdats inneliggande
på sjukhus på grund av psykisk sjukdom och/eller missbruk av alkohol eller
narkotika under barndomen, d v s innan de hade fyllt arton år. Psykisk sjukdom hos för-
äldern var den vanligaste orsaken som berörde 5,7 procent av barnen, medan alkoholmissbruk
berörde 2,5 procent och narkotikamissbruk 1,5 procent. Under ett enskilt år
handlar det om ca 26 000 barn som har minst en förälder som vårdas på sjukhus grund
av psykisk sjukdom eller missbruk.
Betydligt fler föräldrar har indikatorer på problem med alkohol och narkotika av mildare
grad. Om man också räknar in föräldrar som haft vårdkontakter i öppen vård på
sjukhus på grund av missbruk, eller har dömts i domstol på grund av rattfylleri eller narkotikabrott,
var det totalt 17,0 procent av barnen som berördes. Psykisk ohälsa hos föräldrar
som inte är så allvarlig att den leder till sjukhusvård är också relativt vanlig. I undersökningen
av levnadsförhållanden (ULF) 2007–11 svarade t ex 18,1 procent av föräldrar
till barn i åldern 10–18 år att de led av ängslan, ångest eller oro. Psykofarmakamedicinering
är en annan indikator på psykisk ohälsa hos föräldrar. Under ett enskilt genomsnittligt
år under perioden 2006–8 använde 10,7 procent av mödrar och 5,5 procent av fäder
till barn i åldern 1–18 år ett antidepressivt läkemedel.
Något riktigt bra mått på somatisk (=fysisk) sjukdom hos förälder som är så svår att
deras barn behöver information och/eller stöd finns inte i svenska register. I denna rapport
användes definitionen somatisk sjukdom utan missbruk hos föräldrar som var så
svår att den föranledde minst en veckas inneliggande vård på sjukhus, vilket 12,6 procent
av alla barn födda 1987–89 upplevde före sin artonårsdag. Många fler föräldrar har någon
form av kronisk sjukdom, 28,4 procent av föräldrar till barn i åldern 10–18 år i ULFundersökningen
2007–11 rapporterade t ex minst en kronisk sjukdom.
3,4 procent av alla barn födda 1973–89 hade minst en förälder som avlidit innan deras
artonårsdag. Under ett enskilt år är under perioden 2006–08 berördes ca 3 500 barn. 22
procent av de avlidna fäderna och 12 procent av de avlidna mödrarna hade indikatorer på
alkohol- och/eller narkotikamissbruk. Plötslig oväntad död hos en förälder orsakad av
självmord, våld eller olycka drabbade 600–650 barn varje år. Barn som drabbas av dödsfall
på grund av olyckor och våld hos föräldrar är ofta förskolebarn, medan andra typer av
dödsfall hos föräldrar framför allt drabbar barn i tonåren.
Missbruk och psykisk sjukdom är inte sällan en bidragande orsak till separation mellan
föräldrar. En konsekvens av detta är att många föräldrar som vårdas på sjukhus på grund
av dessa problem inte bor tillsammans med sina barn och att den förälder som bor tillsammans
med barnet ofta är ensamstående. Endast ungefär en tredjedel av fäder som
vårdas på sjukhus på grund av missbruk bor tillsammans med sina barn, mot ungefär
dubbelt så många mödrar.
6
Missbruk, sjukdom och dödsfall hos föräldrar drabbar framför allt barn som befinner
sig i en utsatt social position i det svenska samhället. Det är ungefär tre gånger så vanligt
att föräldrar i barnfamiljer med låg socio-ekonomisk position vårdas på sjukhus för någon
av dessa orsaker jämfört med föräldrar i barnfamiljer med hög socio-ekonomisk position
En social gradient finns också för dödsfall hos föräldrar, där den är större för dödsfall för
fäder än för mödrar, och särskilt stor för plötsliga oväntade dödsfall som orsakas av
självmord, våld och olyckor, dödsfall som framför allt drabbar fäder.
Föräldrar födda utanför Europa vårdas betydligt mer sällan på sjukhus grund av såväl
alkohol som narkotikamissbruk jämfört med föräldrar med svenskt ursprung, men något
oftare än andra på grund av psykisk sjukdom. Föräldrar med annat nordiskt ursprung än
svenskt vårdas oftare för såväl missbruk som psykisk sjukdom, och har och har också en
högre dödlighet än barn till föräldrar med annat svenskt eller utländskt ursprung.
Föräldrars missbruk eller psykiska sjukdom är vanliga orsaker till att barn omhändertas
för samhällsvård i Sverige. För barn som vårdats mer än fem år i samhällsvård har 61
procent åtminstone en förälder som vårdats inneliggande på grund av missbruk eller psykisk
sjukdom, och 23 procent har en förälder som har avlidit före barnen fyllt arton år.
Det stora antalet barn som potentiellt berörs av den nya lagen om information och stöd
till barn som anhöriga i hälso- och sjukvården gör det angeläget med en diskussion om
prioriteringar, och ett utvecklingsarbete kring insatser med olika grad av intensitet som
kan matchas till barn med olika nivåer av behov. Här krävs ett nära samarbete mellan
hälso- och sjukvården och socialtjänsten, och särskilt viktigt är detta för att utveckla insatser
som är ändamålsenliga för de stora behov av information och stöd kring föräldrars
psykiska sjukdom, missbruk och död som rör barn i samhällsvård. Barn till föräldrar med
kroniska fysiska sjukdomar framstår som ett område där fördjupade analyser i andra
datakällor än register är särskilt viktiga för att skapa underlag för det fortsatta utvecklingsarbetet.

Barn som anhöriga: hur går det i skolan?

Hjern, A., Berg, L., Rostila, M., Vinnerljung. (2013)

Rapport 2 från projektet "Barn som anhöriga" från CHESS, Stockholms universitet/Karolinska Institutet i samarbete med Institutionen för socialt arbete vid Stockholms universitet.

Denna kartläggning av hur det går i skolan för barn som berörs av allvarliga svårigheter hos förälder eller annan vuxen i familjen, har gjorts inom ramen för ett regeringsuppdrag.

Barn som anhöriga: hur går det i skolan? Nka, Linnéuniversitetet, Chess, Barn som anhöriga 2013:3.

Hjern A, Berg L, Rostila M, Vinnerljung B. (2013)

Detta är den andra rapporten av tre i projektet "Barn som anhöriga", som genomförs
av CHESS och institutionen för socialt arbete vid Stockholms universitet i samarbete
med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar.
Rapportens syfte är att belysa skolprestationer i grundskolan för barn som är anhö-
riga. Vi har analyserat meritvärde och gymnasiebehörighet från årskurs 9 för 655 000
barn under 2003–2008, med fokus på barn som är anhöriga, det vill säga barn med
föräldrar som har vårdats på sjukhus på grund av missbruk, psykisk eller fysisk sjukdom
eller som har avlidit – då barnen var i åldern 0–15 år.
Bland alla barn i undersökningen var det 10,3 procent av flickorna och 13,0 procent
av pojkarna som lämnade grundskolan utan att ha uppnått gymnasiebehörighet.
Barn till föräldrar med missbruk och/eller psykisk sjukdom utgjorde tillsammans sju
procent av studiepopulationen, och framstod som den grupp bland barn som anhö-
riga som hade de minst tillfredställande skolresultaten. Av pojkar som har en förälder
som missbrukar var det 27 procent (far missbrukar) respektive 30 procent (mor
missbrukar) som lämnade grundskolan utan gymnasiebehörighet, liksom 22 respektive
23 procent av pojkar som har en förälder med psykisk sjukdom, jämfört med enbart
12 procent av pojkar från familjer utan missbruk eller psykisk sjukdom. Något
fler flickor än pojkar uppnådde gymnasiebehörighet även i dessa familjer, men
mönstret i förhållande till föräldrars missbruk och psykiska sjukdom var detsamma
som för pojkar.
Det maximala meritvärdet för en elev som går ut årskurs 9 är 320 och medianvärdet
i denna undersökning var 210. Genomsnittligt var meritvärdet, i jämförelse med
barn i familjer utan känt missbruk eller psykisk sjukdom, 45 meritpoäng lägre hos
barn till missbrukande mödrar, 39 meritpoäng lägre hos barn till missbrukande fäder
och 22 meritpoäng lägre hos barn till någon förälder med psykisk sjukdom.
Missbruk hos föräldrar, men också i viss mån psykisk sjukdom, var vanligare i familjer
som fått försörjningsstöd det år barnet avslutade årskurs 9, där föräldrarna
hade kort skolgång bakom sig och familjer där föräldrarna hade separerat. För att
undersöka betydelsen av detta för barnens skolresultat gjorde vi en analys där vi på
matematisk väg vägde in dessa faktorer tillsammans med föräldrarnas missbruk och
psykiska sjukdom. Det visade sig att så mycket som 85 procent av den ökade risken
för barn till föräldrar med missbruk och 75 procent av den ökade risken för barn till
föräldrar med psykisk sjukdom att inte uppnå gymnasiebehörighet var förknippad
med dessa tre sociala faktorer. Vår analys pekar på att det både handlar om sociala
faktorer som kan ha bidragit till uppkomsten av missbruket respektive den psykiska
sjukdomen (utbildningsbakgrund) och faktorer som troligen oftare är en konsekvens
(försörjningsstöd respektive föräldraseparation) av dessa föräldrafaktorer.
Av barnen i studiepopulationen bodde 63 procent i samma hushåll som bägge sina
biologiska föräldrar det år som de avslutade årskurs 9. Av övriga barn hade 35 procent
föräldrar som separerat och 2,1 procent en förälder som avlidit. Ungefär dubbelt
så många barn till separerade föräldrar och barn i familjer där någon förälder avlidit
lämnade grundskolan utan gymnasiebehörighet, jämfört med barn i kärnfamiljer, där
andelen var drygt åtta procent. Skillnaderna mellan barn till separerade föräldrar och
barn i familjer där någon förälder avlidit var små. Det fanns en viss skillnad mellan
könen när det gällde konsekvenserna av att ha förlorat sin mor i dödsfall, där konse-
6
kvenserna var större för flickor än för pojkar. För bägge könen var dock konsekvenserna
större av att ha förlorat en far än en mor. Sociala faktorer som föräldrars utbildningsbakgrund
och försörjningsstöd bidrog något till skillnaderna i skolresultat
mellan barn i kärnfamiljer och barn i enföräldrahushåll.
Fysisk sjukdom hos föräldrar representerades i denna studie av inflammatorisk
tarmsjukdom, multipel skleros och leukemi. Barn vars mödrar hade inflammatorisk
tarmsjukdom eller multipel skleros hade något lägre meritvärde än genomsnittet,
efter att analysen har justerats för den friska förälderns skolbakgrund, medan någon
negativ effekt av fäders sjukdom på barnens skolprestationer inte noterades. Leukemi
fick exemplifiera cancersjukdom hos föräldrar i undersökningen. Barn till föräldrar
med leukemi med dödlig utgång hade klart sämre skolprestationer än andra barn i
undersökningen, medan några skillnader från genomsnittet överhuvudtaget inte
kunde identifieras hos barn till förälder som överlevde leukemi. Det behövs dock fler
studier av barn till föräldrar som drabbas av cancersjukdom för att bekräfta dessa
resultats relevans för cancer hos föräldrar i allmänhet.
Ett genomgående mönster för samtliga grupper av barn som anhöriga var att för-
äldrars egen utbildningsbakgrund hade större betydelse för barnets skolprestationer
än förälderns sjukdom eller död, och att en lång utbildning hos föräldrar hade en viss
skyddande effekt på skolprestationerna av förälderns sjukdom eller död. Vi ser också
att barn i familjer med försörjningsstöd generellt har ett lågt meritvärde, oavsett om
föräldrarna har indikation på missbruk/psykisk sjukdom eller ej.
Resultaten från denna studie visar att föräldrars missbruk, sjukdom och död inte
sällan påverkar deras barns skolresultat på ett negativt sätt. Yrkesgrupper som möter
dessa barn bör således tänka på att hjälp med skolarbete och läxläsning kan vara en
viktig komponent i ett psykosocialt stöd. När det gäller förebyggande insatser i skolan
pekar studien i första hand på behovet av generella insatser för barn som har svårt att
få stöd i hemmet i skolarbetet oavsett orsak. Där det kan handla om barn som är anhöriga,
men likväl om barn med t ex separerade föräldrar eller föräldrar med kort
egen utbildning.
Studien pekar också på särskilt bristfälliga skolresultat hos barn där föräldrars
sjukdom och död drabbar familjer som har kontakt med socialtjänsten, antingen i
form av försörjningsstöd eller genom att barnen placerats i samhällsvård. De bristfälliga
skolprestationerna hos dessa gör socialtjänsten till en naturlig plattform för interventioner
i syfte att stödja skolarbetet hos barn i familjer med social sårbarhet,
inklusive sjukdom och död hos förälder. Både svensk och internationell forskning
pekar på att det är realistiskt att förvänta sig positiva resultat från denna typ av interventioner.
Det är därför angeläget att metoder för att stödja skolarbetet hos elever i
socialt sårbara familjer får en större spridning bland Sveriges kommuner.

Barn som flyttas i offentlig regi. En studie av förekomst och upplevelser av instabil samhällsvård för barn

Skoog, V. (2013)

Avhandling

Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution

Barn som flyttas i offentlig regi. En studie av förekomst och upplevelser av instabil samhällsvård för barn

Skoog, V. (2013)

Avhandling

Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution

Barn som har föräldrar med utvecklingsstörning

Socialstyrelsen (2007)

Rapporten vill bidra med kunskap och idéer för yrkesverksamma och bilda underlag när stöd och insatser formas och samverkan utvecklas. Publikationen bygger på forskning som kompletterats med andra studier samt med erfarenheter från yrkesverksamma.

Barn som pårörende

Storm Mowatt Haugland B, Ytterhus B, Dyregrov K, editors (2012)

Sykdom, ulykker og kriser har alltid et familieperspektiv. Det minner forfatterne av denne kunnskapsrike boken om på hver side. De stiller det viktigste av alle spørsmål: Er det barn der?
Hvor du enn befinner deg i kretsen rundt en sorg- og kriserammet familie, midt i sentrum der hjemme, som den som tar imot barnet i barnehage eller skole, eller som ansvarlig for behandling og oppfølging av den syke, trenger du denne boken. Aldri før har noen så grundig og rørende oppsummert teoretisk og praksisbasert kunnskap om pårørende barns behov. Det kan ikke sies for ofte, og det står med store bokstaver i boken: Best hjelper det barnet at mamma eller pappa får all den støtte de trenger. Når du har lest denne boken, er du i besittelse av noe helt unikt – en oppdatert empati!

Barn som är anhöriga till föräldrar med allvarlig fysisk sjukdom eller skada. En kunskapsöversikt om metoder för att ge stöd till barn

Järkestig Berggren, U., & Hanson, E. (2013)

Denna kunskapsöversikt tar upp metoder för att ge information, råd och stöd till barn när deras förälder är fysiskt sjuk. Syftet är att den ska vara ett stöd för professionella i hälso- och sjukvård samt socialtjänst som möter barn och ungdomar i sin yrkesutövning. I kunskapsöversikten presenteras de metoder som kunskapsöversikten identifierat, deras vetenskapliga underlag och effekter. Dessutom beskrivs de svårigheter som barn möter när en förälder blir fysiskt allvarligt sjuk.

Barn som är anhöriga till föräldrar med allvarlig fysisk sjukdom eller skada: En kunskapsöversikt om metoder för att ge stöd till barn

Järkestig Berggren Ulrika, Hanson Elizabeth (2013)

Denna kunskapsöversikt tar upp metoder för att ge information, råd och stöd till barn när deras förälder är fysiskt sjuk. Syftet är att den ska vara ett stöd för professionella i hälso- och sjukvård samt socialtjänst som möter barn och ungdomar i sin yrkesutövning. I kunskapsöversikten presenteras de metoder som kunskapsöversikten identifierat, deras vetenskapliga underlag och effekter. Dessutom beskrivs de svårigheter som barn möter när en blir förälder fysiskt allvarligt sjuk

Barn till föräldrar med cancer – hur många berörs och vilka är konsekvenserna i ett livsloppsperspektiv? Nka Barn som anhöriga 2016:1

Berg Lisa, Hjern Anders (2016)

Rapport nr 5 i projektet "Barn som anhöriga", som genomförs av CHESS och institutionen för socialt arbete vid Stockholms universitet i samarbete med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar. Rapportens syfte är att belysa hur vanligt det är att barn upplever att en förälder drabbas av en cancersjukdom, vilka konsekvenser detta har för skolprestationer i årskurs 9 samt för hälsa och social situation för unga vuxna i åldern 18–40 år.

Barn utan hem. Olika perspektiv

Andersson, G. & Swärd, H (2007)

Hur kan man förklara att det finns familjer som befinner sig i välfärdens utkant? Vad vet vi egentligen om de barn och familjer som lever mitt ibland oss, men utan tillgång till ett tryggt boende? Hur upplever de drabbade barnen situationen?

Barn utan hem belyser frågan om barn och familjer i hemlöshet ur olika perspektiv. Författarna lyfter fram de grupper som ställts utanför såväl arbetsmarknaden som socialförsäkringssystemet och den reguljära bostadsmarknaden. Fokus ligger på de drabbade barnens och deras familjers liv i utanförskap. Barnens situation belyses i ett helhetsperspektiv som inkluderar såväl aktörer som strukturer.

Boken vänder sig till universitets- och högskolestuderande inom socionom- och lärarutbildningarna och andra utbildningar inom de sociala och pedagogiska fälten samt till yrkesverksamma som kommer i kontakt med barn och familjer i svåra livssituationer.

Barn vi bekymrar oss om

Druggli, May Britt (2003)

Författaren belyser i boken sambandet mellan de vuxnas förhållningssätt, pedagogens handlande och de avvikande beteendena som barn kan uppvisa i förskolan eller i skolan. I ett nyskrivet avsnitt för den svenska utgåvan behandlar Hans Bengtsson samarbetet med socialtjänsten och de ansvars- och sekretessregler som gäller.

Caregiving

Zarit, S., Femia, E. E., & Whitlatch, C. J. (2015)

Encyclopedia of Mental Health, Second Edition, tackles the subject of mental health, arguably one of the biggest issues facing modern society. The book presents a comprehensive overview of the many genetic, neurological, social, and psychological factors that affect mental health, also describing the impact of mental health on the individual and society, and illustrating the factors that aid positive mental health.
The book contains 245 peer-reviewed articles written by more than 250 expert authors and provides essential material on assessment, theories of personality, specific disorders, therapies, forensic issues, ethics, and cross-cultural and sociological aspects. Both professionals and libraries will find this timely work indispensable.

Challenges in evaluating childhood bereavement services

Rolls, L. (2011)

This paper discusses the evaluation of childhood bereavement services in the UK policy context and some of the challenges this presents. Two key difficulties are discussed: the lack of any clear, agreed outcomes from bereavement interventions with children, and the challenge of evaluating the complex social processes that bereavement interventions involve. Two recommendations are made to address these in the short term and to generate data for wider research. These are: to strengthen services' existing evaluation strategies, and to develop a routine evaluation package that can be used by all services. This would comprise a basic data set, a user satisfaction questionnaire, and a childhood bereavementfocused clinical outcome routine evaluation measure. In the longer term, further research is recommended, including UK-based longitudinal studies.

Childhood bereavement: distress and long term sequelae can be lessened by early intervention

Black, D. (1996)

When Alison Hargreaves lost her life climbing K2 in the Himalayas, her widower was strongly criticised for acceding to their 6 year old son's request to see "mummy's last mountain" and even more so when he took along on the trek their 4 year old daughter. But the ensuing expedition clearly enabled the children to process the information about their mother's death and to begin the task of mourning. As the general practitioner who accompanied and counselled the children reported,1 after seeing the mountain, building a memorial cairn at its base, and using a workbook designed to help young children to understand and come to terms with death,2 Kate was able to say, "Mummy had tried her best to come down and see us, but she just couldn't, the storm was so strong."

Childhood bereavement: psychopathology in the 2 years postparental death

Cerel, J., Fristad, M.A., Verducci, J., Weller, R.A., & Weller, E.B. (2006)

Abstract
OBJECTIVE:
Although the death of a parent is one of the most significant stressors a child can experience, the psychiatric sequelae of parental death are not fully understood.
METHOD:
A total of 360 parent-bereaved children (ages 6-17) and their surviving parents were directly interviewed four times during the first 2 years following the death (at 2, 6, 13, and 25 months). Data collection occurred from 1989 to 1996. Psychiatric symptomatology was compared among the bereaved children, 110 depressed children, and 128 community control children and their informant parents. Additional analyses examined simple bereavement without other stressors versus complex bereavement with other stressors and anticipated versus unanticipated death.
RESULTS:
Bereavement following parental death is associated with increased psychiatric problems in the first 2 years after death. Bereaved children are, however, less impaired than children diagnosed with clinical depression. Higher family socioeconomic status and lower surviving parents' level of depressive symptoms are associated with better outcomes. Complex bereavement was associated with a worse course, but anticipation of the death was not.
CONCLUSIONS:
Childhood bereavement from parental death is a significant stressor. Children who experience depression in combination with parental depression or in the context of other family stressors are at the most risk of depression and overall psychopathology.

Children of alcoholic parents: a review

Steinhausen, H-C. (1995)

Children of alcoholics are prone to genetic, environmental, and teratogenic risk factors. This review starts by outlining the developmental risks due to intrauterine exposure to alcohol. Furthermore, the overall findings from genetic research are summarized. A further section deals with the analysis of the environment of the family with an alcoholic parent. Within the section on psychopathology the special links to conduct disorders and delinquency, hyperkinetic disorders, substance abuse, anxiety and depression, and somatic problems are described. Special consideration is also given to the literature dealing with cognitive and neuropsychological functioning in the offspring of alcoholic parents. Finally, the limitations of current knowledge are emphasized.

Children with medical complexity: an emerging population for clinical and research initiatives

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. B., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011)

Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.

Children´s assessment of participation and enjoyment & Preferences for activities of children

King G, King S, Rosenbaum P, Kertoy M, Law M, Hurley P, et al. (2004)

The psychometric properties of assessments must be established for specific populations. The psychometric properties of the Children's Assessment of Participation and Enjoyment/Preference for Activities of Children have been studied only in a sample of children with physical disability. We conducted a study to determine the appropriateness of drawing inferences from this assessment for children with high-functioning autism (HFA). The content validity and test–retest reliability (r > .7) were both found to be adequate for this population. Parents' agreement with most of their children's self-ratings on this assessment provided an estimate of interrater reliability. We also ascertained the feasibility of gathering recreational participation information from children with HFA and found that adaptations to facilitate the self-completion of the tool should be made available. The study findings support the use of this tool to assess recreational participation among children with HFA.

Children´s experiences of Hospitalization

Coyne, I. (2006)

Abstract
This article reports on children's experiences of hospitalization. Data were collected via semi-structured interviews with 11 children aged between seven and 14 years from four paediatric units in England. The children identified a range of fears and concerns, which included: separation from parents and family; unfamiliar environment; investigations and treatments; and loss of self-determination. The children's loss of self-determination over personal needs exacerbated their fears and concerns. It needs to be recognized that compliance with hospital routines is a variable, which influences children's reaction to hospitalization. The findings clearly indicate that children need adequate information tailored to their needs, that their views are sought in the planning and delivery of their care and that hospital environments need to be made more child-centred. Interventions designed to reduce children's stress during hospitalization are not only likely to decrease their stress at the time, but also likely to influence how future experiences are appraised and managed.

Children’s representatives in psychiatric services: What is the outcome?

Östman, M., & Afzelius, M. (2011)

Background: Psychiatric services have established children's representatives in an effort to support children of mentally ill patients.
Material: Twenty two specially designated children's representatives and 19 other staff members were asked how they conceived the role of children's representatives and if those representatives had the responsibility of identifying children of mentally ill patients.
Discussion: Children's representatives expressed difficulty in functioning as advocates for children whose parents were being treated for mental illness. Members of the psychiatric staff, although aware their patients had children, seldom met them since they focused on the adults.
Conclusions: More than one third of all patients seeking psychiatric care have children, yet children's representatives and other staff members seldom meet them.

Combining informal care and work: supporting carers in the workplace

Arksey H. (2002)

The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.

Community participation patterns among preschool-aged children who have received Part C early intervention services

Khetani M, Graham JE, Alvord C. (2013)

Background

We examined activity-specific patterns and child, family and environmental correlates of participation restriction in nine community-based activities among preschoolers with disabilities who have received Part C early intervention services.
Methods

Data were gathered from a subsample of 1509 caregivers whose children (mean age = 67.7 months) had enrolled in the National Early Intervention Longitudinal Study (NEILS) and completed a 40-min computerized telephone interview or 12-page mailed survey. Data were analysed on cases with complete data on the variables of interest. Bivariate relationships were examined between variables, including patterns of co-reporting participation difficulties for pairs of community activities.
Results

Caregivers were more than twice as likely to report difficulty in one activity (20%) than difficulties in 2–3, 4–5, or 6–9 activities. Co-reporting paired difficulties was strong for activities pertaining to neighbourhood outings but less conclusive for community-sponsored activities and recreation and leisure activities. Our data show strong and positive associations between child functional limitations in mobility, toileting, feeding, speech, safety awareness, and friendships and participation difficulty in 7–9 activities. Lower household income was associated with participation difficulty in 7 out of 9 activities and difficulty managing problematic behaviour was strongly associated with participation difficulty in all 9 activities. Each of the three environmental variables (limited access to social support, transportation and respite) was associated with participation restrictions in all nine activities.
Conclusion

Results provide practitioners with detailed descriptive knowledge about modifiable factors related to the child, family and environment for promoting young children's community participation, as well information to support development of a comprehensive assessment tool for research and intervention planning to promote community participation for children enrolled in early intervention.

Coping, stress resistance, and growth: Conceptualizing adaptive functioning

Holahan, CJ., Moos, RH., & Schaefer. JA. (1996)

ABSTRACT analyze the coping process, emphasizing the relevance of coping research to understanding adaptive functioning more generally / begin by considering general conceptualizations of coping, and present an integrative conceptual approach / describe the relation between different coping strategies and adaptive functioning / present 2 models of adaptive functioning—reflecting both stress resistance and crisis growth—that depend on coping as a central mechanism / highlight key issues that refine our general understanding of coping and adaptation.

Decreasing the risk of complicated bereavement and future psychiatric disorders in children

Kirwin, K.M. & Hamrin, V. (2005)

Abstract
TOPIC:
Decreasing the risk of complicated bereavement and future psychiatric disorders in children.
PURPOSE:
This literature will determine what major factors influence a child's response to death and to understand how children react to the death of a parent at different developmental stages. It will evaluate the following: a) What are children's emotional responses to the death of a parent? b) How can a surviving parent help the grieving child complete the tasks of grieving? c) What skills are important for a parent to learn in order to help the grieving child through the tasks of grieving and d) How can mental health providers help the grieving family and the grieving child?
SOURCES:
Relevant literature from child psychiatry, child psychology, and nursing.
CONCLUSIONS:
The death of a parent is a major stressful event for children and their families. This traumatic event can bring serious psychological and social distress to bereaved children and their families. Children who are not supported in the early phases of grieving can develop serious emotional and behavioral problems that can lead to the development of some major psychiatric disorders. Providing early prevention support programs for surviving parents and bereaved children can help both the parents and the children adapt to their losses. These structured programs can decrease the risk of complicated grief in bereaved families. More research studies are needed to validate the effectiveness of these early prevention program interventions.

Det moderna föräldraskapet – en studie av familj och kön i förändring

Bäck-Wiklund, Margareta & Bergsten, Birgitta (1997)

Den moderna förälderns lott är att ständigt reflektera över sig själv - som förälder, som partner, som könsvarelse osv. Värderingarna hemma och på jobbet är olika, kraven från båda håll är alltid stora och kvinna och man förväntas leva jämlikt. Föräldrar i dag känner sig splittrade och otillräckliga. I denna mångtydiga situation måste vardagen fungera. Det är då de traditionella rollerna kommer till användning igen, men på nya villkor.

De flesta i vårt land säger sig stå bakom ett jämställdhetsideal, men hur lever vi egentligen i praktiken? Den här boken lyfter fram familjen som en plats där jämlikheten sätts på undantag. Boken består av två delar. Den första handlar om den svenska välfärdsstaten i ett familjeperspektiv och kulturella föreställningar kring kvinnligt och manligt. Teorier om familj, kön och föräldraskap i det moderna samhället presenteras och problem inom den empiriska forskningen diskuteras.

I del två analyseras hur vardagen ter sig för ett trettiotal unga barnfamiljer som författarna följt under mer än två år. Resultatet visar hur svenska föräldrar ser på bland annat barnuppfostran, hem- och lönearbete, kvinnligt respektive manligt. Samtliga föräldrar sätter upp barnens bästa som det viktigaste målet i sina liv, men mödrarna väljer andra sätt att förverkliga det än fäderna. I ett särskilt avsnitt analyseras moderskapet. Där framträder det dåliga samvetet som ett tidens tecken och att säkerhet i modersrollen nästan alltid förutsätter en trygg förankring på arbetsmarknaden.

Det tårdränkta barnet : min berättelse om att bli pappa till ett barn med utvecklingsstörning

Karlsudd Peter (2015)

VARFÖR DENNA BOK?Den här boken påbörjades för tjugofyra år sedan. Då kom vår tredje dotter Lisa till världen och hela vår familjesituation förändrades i grunden. Lisa föddes med funktionsnedsättningen Downs syndrom, eller mongolism, som många felaktigt kallar det. Under Lisas första månader skrev jag ner mina tankar och reaktioner i form av anteckningar och dikter. Mycket text kring förtvivlan, sorg, skam, ilska, hopp, kärlek och det som jag, och säkert andra mycket tidigare än jag själv, uppfattade som självömkan.Efter några månader övergav jag mitt skrivande, troligen för att jag inte hade samma uttrycksbehov. Men säkert också för att mitt samvete inte ville konfronteras med mina formuleringar. Behovet av att skriva dikter avtog. När jag sjutton år senare hittade en gammal utskrift av mina anteckningar föddes idén om att fullfölja berättelsen fram till dags dato. En fortsättning på en historia som varit arbetsam, men som stärkt vår familj och gett oss särskilda erfarenheter och livskvaliteter. En viktig anledning till att nu avsluta berättelsen var att söka en förklaring till varför jag reagerade som jag gjorde när Lisa föddes. Var mina reaktioner ovanliga? Kunde andra uppleva situationen på liknande sätt? Samtidigt sporrades jag av en slags nyttoinriktad ambition att få andra att förstå min upplevelse: I ett av mina lyckligaste ögonblick ställs jag inför faktumet, att vårt nyfödda barn har en funktionsnedsättning. Så den här boken blir främst en personlig vittnesbörd. Men den som tagit del av den vill säkert gå vidare, vidga sin kunskap och få veta mera. Boken avslutas därför med en referenslista över vetenskaplig litteratur och information kring mitt ämne. Jag hoppas att detta kan inspirera till vidare läsning och diskussion. Vid varje kapitelslut finns korta sammanställningar av fakta eller refererat av det viktigaste jag läst. Forskning vill ju annars alltid bli för lång, det är därför den blir vad den ska vara, i bästa fall: Ögonöppnande, och utan slut. För den som vill koppla bokens innehåll till utbildning finns ett textmaterial: "Det tårdränkta barnet. Forskningsgenomgång, diskussionsfrågor och förslag till arbets- och fördjupningsuppgifter", som lätt kan laddas hem på webbadressen karlsudd.se. Här kan du även se Lisas bilder i färg.Min berättelse här bygger alltså på mina personliga erfarenheter. Jag vill betona det, allt jag skriver får givetvis stå för mig. Jag har försökt anstränga mig för att göra rättvisa åt övriga familjemedlemmars minnesbilder. Under fem somrar har jag försökt slutföra texten, men inte lyckats. Eftersom Lisas utveckling gått bakåt de senaste åren har det varit svårt att skriva om den tid som varit. Om du läser den här texten omgiven av ett bokomslag, har jag trots detta lyckats i mina föresatser.Boken tillägnar jag Lisa - vår underbara dotter och syster som har gett oss så mycket glädje, kärlek och insikter i livet. Som vi alltid säger till henne vid läggdags: VI ÄR STOLTA ÖVER DIG, VI ÄR RÄDDA OM DIG OCH VI ÄLSKAR DIG.Pappa Peter, med uppmuntran från mamma Marie och storasystrarna Anna-Mi och Hanna.Karlsnäs, 2014

Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders

Flyckt L, Fatouros-Bergman H, Koernig T. (2015)

BACKGROUND: In a previous study, the objective burden of informal caregiving to
patients with psychotic disorders amounted to 22 hours/week, and the subjective
burden was huge with predominately anxiety and depression as main symptoms. In
this study, determinants of the informal caregiving burden are analyzed to find
foci for interventions to ease the size of burden.
METHODS: Patients with psychotic disorders (n = 107) and their informal
caregivers (n = 118) were included. They were assessed with a comprehensive
battery of rating scales including patient and caregiver characteristics as well
as the amount and quality of health-care provision.
RESULTS: A multiple linear regression analysis showed that the subjective burden
was significantly lower when patients had higher levels of functioning and when
the health status of the informal caregivers was good. No significant
determinants were found for the objective burden, but an association was found
between a higher socioeconomic status of the caregivers and the amount of money
provided for the patient. An association was also found between a positive
perception of caregiving and more hours spent on caregiving.
CONCLUSION: The functioning level of the patients was the main determinant of the
subjective burden of informal care. For the objective burden, no main determinant
was found.

Developing new strategies to support future caregivers of the aged in Canada: Projections of need and their policy implications

Keefe J, Légaré J, Carrière Y. (2007)

Projections of future need for Canadian continuing care services typically uses current utilization patterns and population aging. Accurately assessing this need is much more complex since disability patterns among the elderly are changing and availability of caregivers is affected by changes in family structure. This paper projects annual growth rates between 2001-2031 in the need for informal and formal support among elderly Canadians and discusses the policy implications of the increasing demand for informal caregivers. Using Statistics Canada's LifePaths micro-simulation model, these projections incorporate disability rates and the potential availability of informal caregivers. The authors conclude that continued focus on family to meet the needs of elderly Canadians without increased support is not sustainable in the long term. New strategies to support Canadian caregivers are proposed and their economic feasibility in the public and private markets are evaluated (abstract from p. 4 of report).

Differentiation among types of intimate partner violence: research update and implications for interventions

Kelly, Joan B, & Johnson, M P. (2008)

A growing body of empirical research has demonstrated that intimate partner violence is not a unitary phenomenon and that types of domestic violence can be differentiated with respect to partner dynamics, context, and consequences. Four patterns of violence are described: Coercive Controlling Violence, Violent Resistance, Situational Couple Violence, and Separation-Instigated Violence. The controversial matter of gender symmetry and asymmetry in intimate partner violence is discussed in terms of sampling differences and methodological limitations. Implications of differentiation among types of domestic violence include the need for improved screening measures and procedures in civil, family, and criminal court and the possibility of better decision making, appropriate sanctions, and more effective treatment programs tailored to the characteristics of different types of partner violence. In family court, reliable differentiation should provide the basis for determining what safeguards are necessary and what types of parenting plans are appropriate to ensure healthy outcomes for children and parent–child relationships.

Do Young Carers Deserve Justice? Young Caring in the Context of Illness

Sahoo, R., & Suar, D. (2009)

Though there is a lot of discussion on carers' issue, young caring is still ignored and many facts remain unknown to us, which need to be revealed. Children or young people who provide continuous care for ill or disabled parents, siblings or any other family members are young carers. This raises several issues related to justice in the context of the young. Caring has its rewards and difficulties. This paper reviews the literature on informal caregiving for ill family members in order to explore caring concept in children's mind and how young caring varies with age, sex, types of illness and different family situations from the perspective of children and parents. Causes and consequences of young caring have been explored. Agenda for future research is suggested.

Does grief counseling work?

Jordan, J.R. & Neimeyer, R.A. (2003)

Most bereavement caregivers accept as a truism that their interventions are helpful. However, an examination of the bereavement intervention literature suggests that the scientific basis for accepting the efficacy of grief counseling may be quite weak. This article summarizes the findings of four recent qualitative and quantitative reviews of the bereavement intervention literature. It then discusses three possible explanations for these surprising findings and concludes with recommendations for both researchers and clinicians in thanatology that could help to focus efforts to answer the questions of when and for whom grief counseling is helpful.

Does individual treatment for alcoholic fathers benefit their children? A longitudinal assessment

Andreas JB, O'Farrell TJ, Fals-Stewart W. (2006)

Psychosocial adjustment in children of alcoholics (COAs; N = 125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Du får väl säga som det är

Renlund Christina (2017)

Du får väl säga som det är handlar om att vara anhörig och leva nära. Om vårt behov av varandra, om sårbarhet och kraft, om mod och rädsla och om hopp och stora livsfrågor. Det är också en bok om stolthet, tillit, livsglädje och drömmar och om de mirakel som finns i vardagen nära dem vi älskar, om de små miraklen och de stora. Vad vi kan få om vi förmår ta emot.

Föräldrars berättelser. Syskons uppväxt och frågor. Mor- och farföräldras oro och stolthet. Mostrar, fastrar, morbröder och andra närstående. De skriver om kärleken och sorgen, om vardagen, den sällsynta diagnosen och funktionsnedsättningen, om sina tankar och om det som är allra viktigast i livet - relationer, människovärde och mening.

Alla ger de oss något av det finaste de har - sin berättelse. Det är enkelt, det är vardagligt , det är storslaget. Det är en bok om vad det är att vara människa.

Skribenter: Siri Ambjörnsson, Nathalie Besèr, Zenzi Brydolf, Kristina Colliander, Axel Danielson, Frank Ekelund, Miriam Ennefors, Per Feltzin, Pernilla Glaser, Ingrid Hellegren, Imke Janoschek, Håkan Johansson, Jesper Larsson, Kristina Lindh, Gunilla Malm, Anna och Mikael Nordmark, Helene Näslund, Erika Ohlsson, Alexander Persson, Giuseppe Pozzi och Åsa Llinares Norlin, Gunnar Skarland, Arziv Suhak, Kristina och Thomas Taylor, Fredrik Westin

Early understanding and production of graphic symbols

Callaghan, T. C. (1999)

Young children's ability to understand and produce graphic symbols within an environment of social communication was investigated in two experiments. Children aged 2, 3, and 4 years produced graphic symbols of simple objects on their own, used them in a social communicative game, and responded to experimenter's symbols. In Experiment 1 (N = 48), 2-year-olds did not effectively produce symbols or use the experimenter's symbols in the choice task, whereas 3- and 4-year-olds improved their drawings following the game and performed above chance with the experimenter's symbols. Ability to produce an effective graphic symbol was correlated with success on a task that measured understanding of the experimenter's symbols, supporting the claim that children's ability to produce a graphic symbol rests on the understanding of the symbolic function of pictures. In Experiment 2, 32 children aged 3 and 4 years improved their third set of drawings when they received feedback that their drawings were not effective communications. The results suggest that production and understanding of graphic symbols can be facilitated by the same social factors that improve verbal symbolic abilities, thereby raising the question of domain specificity in symbolic development.

Early Violence Exposure and Self-Regulatory Development: A Bioecological Systems Perspective

McCoy, D. C. (2013)

Each year, thousands of American children are exposed to violence in their homes and communities. Although research in multiple fields has shown this violence to have severe and negative consequences for children's self-regulation, this work lacks a unified theoretical orientation that sufficiently captures the complexity of these relationships. Using a bioecological systems framework, the present article presents a multidimensional model of the relationship between children's exposure to violence and their self-regulatory development. Specifically, this model considers: (a) different dimensions of exposure (including chronicity, pervasiveness, and proximity); (b) child- and family-level mediating mechanisms (including biological stress-response systems and parenting); (c) the transactional, multidirectional nature of these relationships; and (d) the ways in which individual and environmental factors may contribute to multifinality. Finally, the present article also proposes a number of methodological and conceptual suggestions for strengthening future research in the area of violence, self-regulation, and psychosocial risk.

Easy targets: a disability rights perspective on the ‘children as carers’ debate

Keith, L., & Morris, J. (1995)

This article looks at how the children of disabled parents are being defined as 'young carers', arguing that the way in which this is hap pening undermines both the rights of children and the rights of disabled people, Analysis of the social construction of 'children as carers' illustrates that researchers and pressure groups are colluding with the government's insistence that 'care in the community' must mean 'care by the community'.

Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial

Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM (2015)

BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.

Effectiveness of telecare in elderly populations - A comparison of three settings

Onor, M. L., Trevisiol, M., Urciuoli, O., Misan, S., Bertossi, F., Tirone, G., et al. (2008)

The primary aim of this study was to assess the level of satisfaction with 3 types of formal care systems of the elderly: (1) a day care center, (2) a nursing home, and (3) telecare service in a group of oldest frail elderly, and to describe the characteristics of the population using the services. The study involved a population of 162 oldest elderly using 3 different types of formal care services. Study participants were asked to complete a questionnaire, investigating socio-demographic characteristics and degree of overall satisfaction with the service, as well as eliciting possible suggestions for improvement. In our study, nearly all subjects using the telecare service were satisfied or very satisfied (98.5%), as compared to 75.3% of those residing in a nursing home, and 76.5% of those attending the day care center. This result confirms the findings of previous studies on elderly subjects satisfaction with telecare services. Telecare, therefore, seems to be the service achieving the greatest levels of satisfaction, a service that can also be used by low-income subjects, by whom it is also perceived as a source of social support.

Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome

Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y. (2013)

This project was supported, in part, by Early Childhood Special Education Doctoral Leadership Training Grant H325D070075 and KIDTALK TACTICS Model Demonstration Center on Early Childhood Language Intervention Grant H326M070004.
PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).

MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.

ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.

ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.

Efficacy trial of a brief cognitivebehavioral depression prevention program for high-risk adolescents: effects at 1- and 2-year follow-up

Stice, E., Rohde, P., Gau, J. & Wade, E. (2010)

Abstract
OBJECTIVE:
To evaluate the effects of a brief group cognitive-behavioral (CB) depression prevention program for high-risk adolescents with elevated depressive symptoms at 1- and 2-year follow-up.
METHOD:
In this indicated prevention trial, 341 at-risk youths were randomized to a group CB intervention, group supportive expressive intervention, CB bibliotherapy, or educational brochure control condition.
RESULTS:
Significantly greater reductions in depressive symptoms were shown by group CB participants relative to brochure control participants by 1-year follow-up and bibliotherapy participants by 1- and 2-year follow-up but not relative to supportive expressive participants. Supportive expressive participants showed greater symptom reduction than CB bibliotherapy participants did at 2-year follow-up. Risk for onset of major or minor depression over the 2-year follow-up was significantly lower for group CB participants (14%; odds ratio = 2.2) and CB bibliotherapy participants (3%; odds ratio = 8.1) than for brochure controls (23%).
CONCLUSIONS:
Results indicate that this group CB intervention reduces initial symptoms and risk for future depressive episodes, although both supportive expressive therapy and CB bibliotherapy also produce intervention effects that persist long term. Indeed, CB bibliotherapy emerged as the least expensive method of reducing risk for future episodes of depression.

Emanuel Miller lecture: Confusions and controversies about Asperger syndrome

Frith, Uta (2004)

BACKGROUND:
Hans Asperger drew attention to individuals who show the core symptoms of autism in the presence of high verbal intelligence.
METHODS:
A review of the literature explores current issues concerning the diagnosis and nature of Asperger syndrome.
RESULTS:
The behavioural and neurophysiological evidence to date suggests that Asperger syndrome is a variant of autism typically occurring in high-functioning individuals, and not a separate disorder. One of the problems of diagnosis is that the typical impairment of social communication may be difficult to identify in early childhood, and can be camouflaged in adulthood by compensatory learning. The range and nature of the social impairments in Asperger syndrome are still in need of investigation, but appear to be less severe than in autism. Experimental evidence suggests that individuals with Asperger syndrome may lack an intuitive theory of mind (mentalising), but may be able to acquire an explicit theory of mind. Brain imaging studies pinpoint a network that links medial prefrontal and temporal cortex as the neural substrate of intuitive mentalising. This network shows reduced activation and poor connectivity in Asperger syndrome. While some individuals with Asperger syndrome have written eloquently about their lives, their ability to talk about their own emotions appears to be impaired (alexithymia). This impairment may be linked to depression and anxiety, which is common in adulthood. Little is as yet known about the often considerable cognitive strengths in Asperger syndrome, or about the difficulties observed in higher-level executive skills.
CONCLUSIONS:
Studies are needed that define the developmental course of the disorder and the nature of the strengths and weaknesses in both social and non-social domains. This requires more sensitive assessment instruments than are currently available. Questions about the prevalence of Asperger syndrome, about associated and secondary features, and about optimal education and management, urgently call for such studies.

Engagement in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development

Axelsson AK, Granlund M, Wilder J. (2013)

BACKGROUND:
Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared.
METHODS:
A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test.
RESULTS:
Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities.
CONCLUSIONS:
Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning.

Evaluation of a Swedish version of the Strengthening Families Programme

Skärstrand E, Sundell K, Andréasson S. (2014)

BACKGROUND:
Adolescents' alcohol consumption is a public health concern in Sweden as well as in many other countries. Underage drinking is associated with increased risks of alcohol-related injuries, risky sexual behaviours and dependence later in life. Different strategies have been used in the effort to prevent this behaviour, and to postpone the onset of alcohol. The Strengthening Families Programme 10-14 (SFP 10-14) from the USA has been highlighted as one of the more effective prevention programmes. The aim of the present article was to evaluate the effectiveness of a culturally adapted Swedish version of the SFP 10-14.
METHODS:
This was a cluster randomized controlled trial including 587 sixth-grade students (age 12) and their parents in 19 elementary schools in Stockholm. Schools were randomly assigned to either control (9 schools, 216 students) or to the family skills training intervention (10 schools, 371 students). The SFP Swedish version consisted of two parts with seven and five sessions, respectively, held separately for youths and parents except two joint family sessions. Measures of students' self-reported episodes of drunkenness, smoking, illicit drug use and other norm-breaking behaviours were collected at baseline (March 2003) and at three subsequent yearly surveys. Data were analysed using multilevel models with an intention-to-treat approach.
RESULTS:
No preventive effects were found for smoking, alcohol and illicit drug use and other norm-breaking behaviours, nor did moderators affect the outcome.
CONCLUSION:
The Swedish version of the SFP 10-14 was not effective in preventing youths' substance use in a Swedish context.

Evaluation of a therapeutic residential intervention for traumatically bereaved children and young people

Trickey, D. & Nugus, D. (2011)

ABSTRACT Child bereavement interventions are rarely subjected to rigorous evaluation, so there is scant evidence in the literature to support their efficacy. This article reports the evaluation of a residential group programme developed by the UK charity Winston's Wish for children and young people and their parents/carers bereaved in traumatic circumstances (murder or manslaughter). A number of validated psychometric measures were taken pre- and post-intervention, and the results indicated positive outcomes for participants. Further research is needed to shed more light on which aspects of bereavement interventions are effective for which children and young people. However, the study does demonstrate that it is possible to conduct scientifically objective and rigorous evaluations of bereavement work with children and young people.

Everyday activity settings, natural learning environments, and early intervention practices

Dunst CJ, Bruder MB, Trivette CM, Hamby DW. (2006)

Findings from two studies examining the parent and child outcomes associated with different ways of conceptualizing natural learning environment early intervention practices are presented. One sample in each study was asked to indicate the extent to which early intervention practitioners implemented their interventions in everyday family or community activities, and one sample in each study was asked to indicate the extent to which everyday family or community activities were used as sources of child learning opportunities. Results from both studies showed that using everyday activities as sources of children's learning opportunities were associated with positive benefits, whereas practitioners' implementing their interventions in everyday activities showed little or no positive benefits, and in several cases, had negative consequences. Results are discussed in terms of the need to carefully consider how and in what manner natural learning environment practices are operationalized by early intervention practitioners.

Everyday Life Situations of School-aged Children with Severe Disabilities: What are the goals for the future? An exploratory study.

Adolfsson M, Westerberg C, Möller K. (2014)

This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure
environments for a group of school-aged children with severe disabilities, including complex disorders and a combination
of disabilities. The purpose was to explore universal ELS; clarify how the children can be supported in their development
of autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all
reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version
(ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and
participation in school or work were of highest importance, but few reported ELS involved directly interacting with other
children. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore,
interventions would be focused on the overall goal that children with severe disabilities take initiatives to become
independent and to form relationships with others.

Exit and Voice. An Investigation of Care Service Users in Austria, Belgium, Italy and Northern Ireland

Egger de Campo M. (2007)

The past decades have seen an introduction of market elements in the provision of social care services (Finer 1999; Mabbett and Bolderson 1999). Welfare state reforms all over Europe have produced welfare pluralism and claims that the increased choice will enhance user participation, promote older persons' autonomy, and improve the quality of services. Within the Fifth FP Research Project CARMA (Care for the Aged at Risk of Marginalization) a case study among users of care services in Austria, Belgium, Italy, and Northern Ireland was conducted that focussed on friction and conflict between clients and service providers and investigated the reasons for discharge and denial of admission to a service. The data from this study can be interpreted in terms of Hirschman's (Exit, voice, and loyalty: responses to decline in firms, organizations, and states. Harvard University Press, Cambridge, 1970) theory on 'exit' and 'voice' as expressions of consumers' dissatisfaction with the quality of a product. Data were collected in different systems offering a variety of procedures for exit from one provider and the choice of a competitor. Also different practices of handling voice i.e., complaints have been documented. The paper questions to what extent various possibilities for exit and voice can enhance users' autonomy and increase the quality of the service supply. It thus contributes empirical findings to a debate that often emphasizes ideological arguments.

Exploring the impact of parental post-traumatic stress disorder on military family children: A review of the literature

King, N., & Smith, A. (2016)

OBJECTIVES:
The number of UK service personnel who have a diagnosis of PTSD is unclear, but there has been a recent increase in referrals to services for PTSD symptomology. It is imperative to understand the impact this may have on the children of affected service families. This review of literature aimed to explore and provide insight into the experiences of services children whose parent has a diagnosis of PTSD.

DESIGN:
A comprehensive review of the literature.

DATA SOURCES:
Online databases CINAHL, MEDLINE, psychARTICLES, The Psychology and Behavioural Sciences Collection and PILOTS were searched.

REVIEW METHODS:
The studies were chosen in keeping with a specified inclusion and exclusion criteria. The literature was critically analysed and key themes identified through the strategy of thematic analysis.

RESULTS:
Five studies met the inclusion criteria. Three key themes were identified from the five articles; secondary traumatisation; impact on the child's mental health; and impact on the child's adult relationships.

CONCLUSION:
The findings highlighted the prevalence of secondary traumatisation and a potential negative impact on the child's mental health and relationships. However, literature used in the review was conducted in countries outside of the UK, therefore the comparison of results may be compromised. This review identifies the paucity of research on this topic and highlights the need for UK based research to be carried out in this area.

Exposure to family violence in young at-risk children: A longitudinal look at the effects of victimization and witnessed physical and psychological aggression

Litrownik, A. J., Newton, R., Hunter, W. M., English, D., & Everson, M. D. (2003)

This study examines the contribution of specific types of family violence exposure (e.g., victim vs. witness; physical vs. psychological) to aggressive and anxious/depressed problem behaviors in young (i.e., 6-year-old) at-risk children. This multisite prospective study of 682 children from four different regions of the country asked mothers and their 6-year-old children to report on violence exposure in their families. After controlling for mother reports of child problem behaviors on the Child Behavior Checklist at Age 4, it was found that subsequent exposure to family violence predicted reported problem behaviors at Age 6. Although mothers' report of child victimization predicted subsequent problem behaviors, witnessed violence was related to these problems only when both mothers and children reported its occurrence. The results of this study suggest that even though there was a relationship between witnessed and directly experienced family violence, both had independent, noninteractive effects on subsequent behavior problems.

Externalizing Outcomes of Youth with and without ADHD: Time-Varying Prediction by Parental ADHD and Mediated Effects

Moroney, E., Tung, I., Brammer, W. A., Peris, T. S., & Lee, S. S. (2016)

Although parental attention-deficit/hyperactivity disorder (ADHD) is a risk factor for multiple negative youth outcomes, it is unknown how change in parental ADHD symptoms over time affects change in child ADHD symptoms; moreover, mediators of these predictions are largely unknown. Parents of 230 5-10 year-old children (68 % male) with (n = 120) and without ADHD (n = 110) were followed prospectively for 6-7 years across three separate waves. Parents self-reported their ADHD and depression symptoms and similarly rated offspring ADHD, oppositional defiant disorder (ODD), and conduct disorder (CD) symptoms; youth self-reported their substance use. Temporally-ordered mediators consisted of parental expressed emotion (EE), derived from the Five Minute Speech Sample, and self-reported positive and negative parenting behavior. Controlling for key demographics and parental depression symptoms, increasing parental ADHD symptoms were a time-varying predictor of worsening youth ADHD and ODD, although it was unrelated to change in CD and alcohol/substance use. Next, although EE facets (i.e., criticism, emotional over-involvement) did not mediate these predictions, negative parenting behavior significantly mediated predictions of youth ADHD (and marginally in predictions of ODD) from parental ADHD symptoms. These quasi-experimental findings suggest that parental ADHD symptoms are a potential unique causal risk factor for offspring ADHD and ODD; also, preventing negative parenting behavior secondary to parental ADHD symptoms is critical to improve trajectories of youth ADHD and ODD. We consider parental ADHD symptoms and family factors underlying emergent externalizing problems utilizing a developmental psychopathology framework, including implications for intervention and prevention.

Facilitators and barriers for co-ordinated multi-agency services

Sloper, P. (2004)

Background Greater collaboration between agencies and the need to improve interagency working is a key policy priority. The lack of co-ordinated multi-agency working in children's services has been highlighted in many research studies. Evidence on the facilitators of and barriers to such working and the outcomes for children and families of co-ordinated services is important to inform local developments.

Methods Literature on multi-agency working was reviewed as part of the evidence gathering to inform the Children's National Service Framework. Searches were mainly concentrated on existing reviews, plus recent studies which included children's services and were not covered by the reviews obtained.

Results There is little evidence on the effectiveness of multi-agency working itself or of different models of such working in producing improved outcomes for children and families. However, reviews of evidence on multi-agency working provide consistent findings on facilitators and barriers, including: clear aims, roles and responsibilities and timetables that are agreed between partners; a multi-agency steering group, commitment at all levels of the organizations involved and good systems of communication and information sharing, including IT systems, are central; support and training for staff in new ways of working is needed. There is some evidence that interprofessional programmes of continuing education can help to remove barriers to joint working.

Conclusions Existing research provides useful information for organizations developing multi-agency services. However, there is a need for methodologically sound research which investigates the outcomes of different models of multi-agency working in services for children, includes assessment of cost effectiveness, and explores the ways in which the factors identified as facilitating multi-agency working relate to outcomes.

Families under the microscope: parallels between the young carers debate of the 1990s and the transformation of childhood in the late nineteenth century

Olsen, R. (2009)

Existing analysis and discussion about young carers—children caring for ill or disabled family members—has been limited in scope, concentrating on narrow policy and service issues. In this paper, I attempt to introduce a more historical perspective to these debates, by comparing responses to the issue of young caring in the 1990s to resistance encountered in the implementation of child labour and education reforms towards the end of the nineteenth century. I discuss the parallel ways in which the quality of childhood for some children became problematised without sufficient recognition of the limited choices that some families face. Copyright © 2000 John Wiley & Sons, Ltd.

Family and carer participation in mental health care: perspectives of consumers and carers in hospital and home care settings

Lakeman, Richard (2008)

It is widely accepted that family and carer participation in adult mental health care is desirable. However, rarely is service development informed by representative opinions of both carers and service users. This study took place in the context of a larger project to introduce and evaluate practice standards relating to family participation. The aim of this paper is to explore the perceptions of service users and carers to carer participation in adult mental health services. One hundred and twenty-nine service users and 86 family members recruited via hospital and community settings completed a survey which addressed obstacles to family participation, perceived benefits of participation and areas for improvement. Many service users and family were entirely satisfied with existing levels of family participation. Different needs for information, support and the nature of participation in mental health care are highlighted in acute hospital and community settings. Across settings, the provision of support and accessing services were identified as the most useful aspects of family participation. Meaningful carer and family participation in mental health care should proceed from respectful connection with carers and be informed by need which will vary depending on setting and circumstances.

Family environmental and genetic influences on children’s future chemical dependency.

Kumpfer KL, De Marsh JP. (1985)

This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.

Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents.

Banach M, Iudice J, Conway L, Couse LJ (2010)

Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study measured the effects of a six-session, co-facilitated, support group on the advocacy skills and self-efficacy of parents coping with a child's diagnosis. Statistically significant increases in the average mean scores for the three subscales of the Family Empowerment Scale were found. Implications for practice and research are discussed.

Folkhälsorapport. Artikelnr 2009-126-71.

Socialstyrelsen (2009)

Folkhälsorapport 2009 är den sjunde nationella rapporten och redovisar hälsans utveckling i olika befolkningsgrupper och hur den påverkats av levnadsvanor och omgivningsfaktorer. Under de senaste decennierna har hälsan förbättrats vilket avspeglar sig i att medellivslängden fortsätter att öka och ökar mer bland män än bland kvinnor. Det har också funnits en ogynnsam utveckling av folkhälsan, olika symtom på nedsatt psykiskt välbefinnande ökade kraftigt under 1990-talet utom bland de äldsta. Under 2000-talet tycks dock denna utveckling ha brutits utom bland ungdomar. De senaste uppgifterna som finns om hur befolkningen upplever sitt hälsotillstånd är från 2005 och speglar ett samhälle under högkonjunktur. Hälsotillståndet kan mycket väl ha försämrats sedan dess med tanke på den ekonomiska kris som gjort sig gällande under sista halvåret.

Medellivslängden ökar mest bland män och högutbildade
Den främsta orsaken till den ökande medellivslängden är att allt färre insjuknar i hjärt- och kärlsjukdomar och bland dem som insjuknar har dödligheten minskat kraftigt. Risken att dö i hjärtinfarkt har nära nog halverats de senaste 20 åren och risken att dö i stroke har minskat med en tredjedel. Minskad rökning samt lägre blodfetter och blodtryck gör att färre insjuknar. Bättre behandlingsmetoder har bidragit till att risken att dö i hjärtinfarkt eller stroke minskat dramatiskt för både kvinnor och män. Cancerdödligheten visar inte samma positiva utveckling: lungcancer minskar bland män men ökar alltjämt bland kvinnor och minskningen av bröstcancerdödligheten är förhållandevis liten. Skillnader i förväntad medellivslängd mellan personer med olika lång utbildning har ökat under hela 1990-talet, och fortsätter att öka under 2000- talet framför allt bland kvinnor. Det är framför allt sociala skillnader i cancerdödlighet som ökar bland kvinnor.

Förändrade levnadsvanor
Bland barn ökade övervikten kraftigt från 1980-talet till 2000-talet men nu tycks ökningen plana ut. Idag är 15-20 procent av alla barn överviktiga och 3-5 procent är feta. Barns matvanor har förbättrats, fler äter frukt och grönsaker medan konsumtionen av läsk och godis har sjunkit markant under senare år. Bland ungdomar i årskurs 9 minskar andelen rökare liksom alkoholkonsumtionen och användningen av narkotika. Ökningen av andelen vuxna med övervikt och fetma var störst på 1990-talet och ser nu ut att avstanna. I åldrarna 16-84 år är hälften av männen och nästan 40 procent av kvinnorna överviktiga eller feta. Fetma förkortar i genomsnitt livet med 6-7 år. De allra senaste åren förefaller energiintaget via maten minska för första gången på decennier. Alkoholkonsumtionen har ökat sedan början av 1990-talet och högst alkoholkonsumtion har män i åldern 20-24 år. Den alkoholrelaterade dödligheten minskar bland män i åldern 25-64 år och ökar i åldrarna över pensionsåldern. Bland kvinnor ökar alkoholdödligheten i åldrarna 65-74 år medan den varit i stort sett oförändrad i åldern 45-64 år. Narkotikadödligheten minskade på 2000-talet efter att ha ökat dramatiskt under decennier.

Hälsoutvecklingen bland ungdomar oroande
Flera olika indikatorer pekar på att psykisk ohälsa är särskilt vanligt bland yngre kvinnor men att den ökar bland båda könen. Andelen självmordsförsök ökar kraftigt bland unga kvinnor, och allt fler unga vårdas på sjukhus för depression eller ångest och för alkoholförgiftning. Under sista åren har dödligheten bland unga män ökat något till följd av en liten ökning i flera dödsorsaker, nämligen skador, alkoholrelaterade dödsorsaker och möjligen även självmord.

Hälsan är ojämnt fördelad
Hjärt- och kärlsjukdomar och diabetes är vanlig are bland lågutbildade.
Rökning minskar i alla grupper utom bland kvinnor med enbart grundskoleutbildning.
Överlevnad i bröstcancer är lägre bland kvinnor med lägre utbildning.
Svår värk och dåligt allmänt hälsotillstånd är betydligt vanligare hos arbetare än hos tjänstemän.
Ensamstående kvinnor med barn har mer besvär av värk, oftare nedsatt psykiskt välbefinnande, röker mer och överviktiga är vanligare.
Astma och födoämnesallergier är vanligare bland barn till föräldrar i lägre socialgrupper. De får dessutom allvarligare symtom av sin astma än barn i högre socialgrupper.
Tandhälsan är betydligt sämre hos socioekonomiskt svaga grupper. Många anser sig inte ha råd med den tandvård de behöver.
Ensamstående kvinnor är en våldsutsatt grupp och 15 procent av alla ensamstående kvinnor med små barn har utsatts för våld i hemmet.
Risken för våld är större bland kvinnor med fysiska och psykiska funktionshinder samt äldre med få sociala kontakter.
Våld och skador drabbar oftare barn i familjer med låga inkomster.
Det är vanligare bland lågutbildade att äldre vårdas av sina anhöriga. De som har högre utbildning köper i större utsträckning dessa tjänster.
Vissa grupper avstår oftare än andra från att hämta ut sina läkemedel: ensamstående med barn, arbetslösa, personer med sjuk- och aktivitetsersättning, personer med ekonomiskt bistånd och de som har höga avgifter för läkemedel. Ensamstående kvinnor med barn avstår i tre gånger så hög utsträckning som befolkningen i sin helhet.

Fosterbarn ur ett könsperspektiv

Andersson, G. (2002)

Barns erfarenheter av separationer och placeringar utanför hemmet får vanligen så stor plats att de skymmer ålders­ och köns­ skillnader, vilket uppmärksammas i denna artikel. Som en del av ett större forsknings­ projekt granskas skillnader mellan 10-11­ åriga pojkars och flickors problem.

Från psykiskt sjuk till psykiskt funktionshindrad

Hydén, Lars-Christer (red) (2005)

Från psykiskt sjuk till psykiskt funktionshindrad belyser de förändrin gar som ägt rum inom den svenska psykiatrin sedan början av 1990-talet , med speciell tyngdpunkt på psykiatrireformen 1994 och dess konsekven ser. Denna reform har bland annat lett till att den kommunala socialtj änsten fått ett allt större ansvar för omsorgen om personer med långva riga och svåra psykiska funktionshinder. Teman som lyfts fram är försk jutningen från begreppet ?psykisk sjukdom? till ?psykiskt funktionshin der?, vår kunskap kring psykiska funktionshinder och hur drabbade pers oner hanterar dessa i sin vardag. Vidare diskuteras de nya roller som anhöriga och frivilligorganisationer fått efter avvecklingen av de gam la mentalsjukhusen; de krav på delaktighet och inflytande över det egn a livet som psykiskt funktionshindrade ställer, något som också föränd rar villkoren för dem som arbetar med dessa frågor. Boken vänder sig s peciellt till personer som utbildar sig inom vård och omsorg

Föräldraskap och missbruk: att ta upp frågor om föräldraskap i missbruks- och beroendevården

Socialstyrelsen (2012)

Genom svaren på de frågor som ställs om familjen är utredare och behandlare i missbruks- och beroendevården ibland de enda som känner till att barnen lever i en familj med missbruk. De behöver uppmärksamma barns och ungas situation, så att deras rättigheter, behov av information, råd och stöd tillgodoses.

Syftet med skriften är att underlätta för personal inom missbruks- och beroendevården att ta upp föräldraskap och samtala med föräldern om barns situation i utredning eller behandling. Den förespråkar ingen särskild modell eller metod i arbetet, utan tar upp förhållningssätt och innehåll i samtal om föräldraskap. Den tar även upp samarbetet med socialtjänstens barn- och ungdomsvård. Skriften riktar sig till utredare och behandlare inom socialtjänsten, hälso- och sjukvården samt övrig missbruks- och beroendevård, och kan också vara av intresse för socialtjänstens barn- och ungdomsvård. Den utgår ifrån situationen vid alkoholmissbruk eller -beroende, men kan i väsentliga delar också vara relevant vid föräldrars missbruk av narkotika eller läkemedel.

Föräldrastöd i teori och praktik

Ferrer-Wreder, L., H. Stattin, Karlsson, E. (2003)

Flertalet vetenskapliga studier har visat att det finns ett samband mellan barns och ungdomars upplevelser i familjen och utvecklingen av en kriminell livsstil. Föräldrastödjande verksamhet har blivit ett samlingsnamn för de åtgärder och projekt där föräldrar är delaktiga i arbetet med att förhindra sociala problem hos sina barn.

Gemensam problemlösning vid Alternativ och Kompletterande Kommunikation

Zachrison G, Rydeman B, Björck-Åkesson E. (2001)

Den här skriften handlar om hur man genom samarbete kan komma fram till
vardagsfunktionella lösningar för personer med kommunikationshandikapp. Utgångspunkten
är den modell för familjemedverkan och gemensam problemlösning som utvecklats av Mats
Granlund och Eva Björck-Åkesson, här speciellt tillämpad på AKK-området. Modellen för
gemensam problemlösning har utformats och använts vid åtgärder för vuxna och barn i behov
av särskilt stöd (Granlund, 1988; Björck-Åkesson & Granlund, 2000). Den har utvärderats vid
forskningsstiftelsen ALA, Stockholm och inom forskningsprogrammet CHILD (ChildrenHealth-Intervention-Learning-Development)
vid Mälardalens Högskola. Likaså har den
använts som grund för en interventionsmodell i ett projekt kring kommunikation (KomP) på
Bräcke Östergård, Göteborg, 1995-1998, (Zachrisson, 1998). Ytterligare erfarenhet av
gemensam problemlösning kring alternativ och kompletterande kommunikation har tillförts
genom projektet "Kommunikation genom teknik – ur ett vardagsperspektiv", ett projekt i
samarbete mellan kommunikations- och dataresurscentren DART i Göteborg och DaKo i
Halmstad 1999-2001, finansierat av KFB (Vinnova).
Skriften riktar sig främst till arbetsterapeuter, logopeder, pedagoger och andra som i sitt yrke
kommer i kontakt med personer som använder eller har behov av alternativ och
kompletterande kommunikation, AKK. Syftet är att beskriva en modell för samverkan där
brukaren, de som han/hon samspelar med och experter/professionella kan mötas. Alla kan
bidra med sina olika kunskaper och erfarenheter i arbetet med att utveckla bra lösningar för
brukaren som ger henne/honom möjligheter att kommunicera i vardagen på ett
tillfredställande sätt.
En ofta förekommande fråga vid gemensam problemlösning är varför begreppet "problem"
används. Anledningen till att vi valt att använda detta begrepp är att det är generellt och kan
inbegripa olika former och nivåer av svårigheter. Det går emellertid bra att använda begrepp
som svårigheter eller frågeställningar. I praktiken pratar man ofta om svårigheter. Naturligtvis
är det viktigt att i första hand se till personens resurser och till resurser i omgivningen och
använda dessa i åtgärdsarbetet.
Gerd Zachrisson, arbetsterapeut vid kommunikations- och dataresurscentret DART i
Göteborg har tagit initiativ till skriften och har sammanställt den tillsammans med Eva
Björck-Åkesson, professor i pedagogik vid Mälardalens Högskola och Bitte Rydeman,
logoped vid dataresurscentret DaKo i Halmstad och doktorand vid Institutionen för Lingvistik
vid Göteborgs Universitet.

Halliday's Communicative-Functional Model Revisited A Case Study

Keshavarz, M. H. (2001)

The author of this study investigated the variety of functions used by a bilingual infant to provide further evidence for the communicative-functional approach to child language acquisition, compared the development of pragmatic functions in a monolingual and a bilingual child, and devised a categorization system that can be applied to child language acquisition data by other researchers in the field. Accordingly, data collected from a Persian-English bilingual child during a period of 10 months, as part of a longitudinal study, were analyzed, and a taxonomy of pragmatic functions the participant used was established. Analysis of the data indicated that despite certain differences in the frequency and distribution of pragmatic functions the participant employed in the present study (bilingual) and those used by Halliday's monolingual child, the two studies demonstrated that both children developed pragmatic functions from a very early age. The theoretical implication of this study is that the development of pragmatic functions is a natural tendency in young children, whether monolingual or bilingual. The practical outcome of the study is a proposed categorization system that is intended to facilitate the analysis of child language acquisition data from a communicative-functional perspective.

His helping hands – adult daughter´s perceptions´ of fathers with caregiving responsibility

Eriksson, H., Sandberg, J., Holmgren, J., & Pringle, K. (2011)

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers "masculine authenticity", all of them appear to cherish "his helping hands" as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional 'male activities' and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

Kvinnors position som informella vårdare har ofta tagits för givet i forskning om och socialpolitisk styrning av informell vård inom familjen i västeuropa, medan relativt få diskussioner har förts om mäns delaktighet och ansvar för densamma. Män som helt oförutsett hamnar i en situation i livet där de måste bestämma sig för om man ska ta sig an ett påtagligt vårdansvar går på många sätt bortom alla de förutsättningar som män vardagsvis har att hantera i livet. Genom att undersöka vårdande mäns insatser i sina familjer kan man lära sig en del av vad som faktiskt sker när män tar på sig ett långvarigt vårdansvar. I denna studie har vi intervjuat åtta döttrar som växt upp och/eller levt nära en pappa som under lång tid vårdat sin partner i det egna hemmet. Resultatet visar att när män har ett långvarigt vårdansvar så kommer det också något gott ur de kunskaper de fått av vårdandet i relation till de egna barnen. Alla döttrar som vi intervjuat prisar sina fäders insatser och -hans hjälpande händer- därför att det hade gett dem en närmare och mer "genuin" relation. Resultatet visar också att vårdansvaret för männen inneburit att de bryter mot rådande konventioner om vad manlighet är och på olika sätt fått hantera och betala för det priset i det offentliga livet. Ett långvarigt och påtagligt vårdansvar innebär således en transformering av sociala relationer, privat och offentligt samt att presentera ett alternativt sätt att vara man på. Avslutningsvis föreslås en mer genusbaserad förståelse och ett mer strategiskt arbets- och förhållningsätt bland professionella, i socialt och välfärdsarbete, i mötet med döttrar och andra familjemedlemmar som stödjer sina vårdande fäder.

HIV-postive mothers´ disclosure of their serostatus to their young children: A review

Murphy, D.A. (2008)

One challenge faced by mothers living with HIV (MLWHs) is the decision about whether or not to disclose their HIV status to their young children, and how best to carry out the disclosure. Disclosure of their serostatus has emerged as one of the main concerns MLWHs have, and that decision can result in high levels of psychological distress. Concerns are exacerbated among MLWHs with younger children, due to the fact that they face additional worries, such as whether the child is old enough to understand, or will be able to keep the information confidential. A great deal of recent research—within approximately the past decade—has been conducted to investigate maternal disclosure of HIV, and the outcomes on children. This paper reviews the current state of the research literature, focusing on factors that appear to influence whether or not mothers chose to disclose; characteristics of children who have been made aware of their mothers' serostatus relative to children who remain unaware; factors that appear to influence children's reactions to maternal disclosure; and implications of this research as well as future research directions.

Identifying adult children of alcoholics: methodological review and a comparison of the CAST-6 with other methods

Hodgins, DC., & Shimp, L. (1995)

Methods of identifying adult children of alcoholics are described and their psychometric properties are reviewed. These methods include self-report single questions and questionnaires and interview schedules. The CAST-6, a shortened version of the Children of Alcoholics Screening Test, is compared with a variety of these methods. The CAST-6 is confirmed as a useful brief screening measure. It was shown to be internally reliable, have good retest reliability and to agree well with other measures. Using a face to face interview as the comparison standard, however, a number of single questions performed equally as well as the CAST-6 and other more complex methods.

Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach

Drotar, D., Flannery, D. J., Day, E, Friedman, S., Creeden, R., Gartland, H., . . . McTaggart, M.J. (2003)

Children's exposure to violence, their psychological response to the violence, and their participation in a community-based intervention service were described. This article describes the provision of mental health services and the process evaluation for the initial phase of the program (1999-2000). A large number (N = 1739) children were referred to the program over a 17.5-month period for mental health intervention immediately after witnessing and experiencing a range of violent acts, the majority of which (N = 1355) involved domestic violence. A majority of referred children and adolescents (N = 946) directly witnessed such violence, and the majority of those who were old enough to provide self-report indicated that they perceived the event as a direct threat to their safety. Many of these children and adolescents also reported high levels of trauma symptoms. The majority of children (N = 1117) who were referred to the program participated. The findings underscore the feasibility of developing mental health services to meet the needs of children who are exposed to violence, especially family violence, at a critical time following violence exposure.

Implementing child-focused family nursing into routine in adult psychiatric practice: Hindering factors evaluated by nurses

Korhonen T, Vehviläinen-Julkunen K, Pietilä A-M. (2008)

Keywords:
child;family nursing;family nursing interventions;psychiatric nursing
Aims and objectives.  The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.

Background.  There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.

Design and methods.  Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.

Results.  Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.

Conclusion.  To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.

Relevance to clinical practice.  The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.

Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.

Dawe S, Harnett PH, Rendalls V, Staiger P. (2003)

Twelve families responded to posters displayed in a methadone clinic for inclusion in a pilot study assessing the viability and potential utility of an intensive, multi-component family-focused intervention, the Parents Under Pressure programme. The programme was designed to improve child behaviour, decrease parental stress and improve family functioning in methadone-maintained families by targeting affect regulation, mood, views of self as a parent, drug use and parenting skills. Nine of the families completed the programme delivered in their homes; eight were recontacted at 3 months. Each family reported significant improvements in three domains: parental functioning, parent-child relationship and parental substance use and risk behaviour. In addition to the changes in family functioning, the majority of families reported a decrease in concurrent alcohol use, HIV risk-taking behaviour and maintenance dose of methadone. The families reported high levels of satisfaction with the programme. It is recommended that future studies include independent measures (e.g. behavioural observations) of child outcome and parental functioning. The results were optimistic and provided the impetus to evaluate the treatment programme using a randomized controlled trial.

Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife

Dentinger E, Clarkberg M. (2002)

Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.

Inte bara Anna : asperger och stress

von Zeipel Elisabet, Alm Kerstin (2015)

Många hade försökt förstå sig på Anna. Men hon hann bli femton år innan någon förstod att hon hade Aspergers syndrom. Att leva med asperger kan vara påfrestande och man stöter på fler hinder i vardagen än andra. Det kan leda till stress och så småningom utbrändhet. Och Anna är långtifrån ensam om sina upplevelser. När Anna var sjutton år kom hon till sist inte iväg till skolan. Här börjar författaren Elisabet von Zeipel och Anna en spännande "resa" som vi får följa med på.

Det här är en fackbok i berättelsens form. Anna har farit illa men trots det är det en hoppfull bok. Utbrändhet kan förebyggas när vi sänker stressen för personer med asperger.

Intentional communication acts expressed by children with severe disabilities in high-rate contexts

Bruce, S. M., & Vargas, C. (2007)

The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 - 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.

Interaction between adult patients’ family members and nursing staff on a hospital ward

Åstedt-Kurki, Päivi, Paavilainen, Eija, Tammentie, Tarja, Paunonen-Ilmonen, Marita (2001)

The purpose of this study was to generate knowledge of the interaction between an adult patient's family members and nursing staff from the staff's perspective.

Data were collected from nursing staff (n=155) working on the wards and out-patient departments for pulmonary, rheumatic, neurological and gastroenterological diseases at a university hospital by using a new questionnaire based on earlier research and the literature. The questions explored the staff's views of interaction with the adult patient's family members. In this study, interaction is seen as an umbrella concept which encompasses giving information to relatives, discussion, contacts between staff and significant others and working together. The instrument included questions about personal and telephone discussions, the provision of written instructions and factors facilitating and complicating interaction. The response rate was 55%. The data were analysed using SPSS software and examined using frequency and percentage distributions and cross-tabulation. The open-ended questions were analysed using qualitative content analysis by reducing, grouping and abstracting the data inductively.

Discussions with relatives while they visited the patient in hospital were the commonest form of interaction. The majority of respondents perceived the interaction with the patient and knowing his or her family members as important. Less than one-fourth of the respondents started discussion with family members, while the majority expected family members to initiate interaction. The majority of respondents perceived the patient's presence in discussion as important, but sometimes they thought it was necessary to discuss with family members without the patient. The staff discussed with family members mainly in the ward office or in patient rooms, which were, however, not perceived as peaceful. Discussions primarily pertained to the patient's condition, discharge from hospital and planning of continued treatment.

Interdisciplinary Studies of Childhood Ethics: Developing a New Field of Inquiry

Carnevale, F. A., Campbell, A., Collin-Vezina, D., & Macdonald, M. E. (2013)

The principal aim of this investigation was to help develop 'Interdisciplinary Studies of Childhood Ethics' as a new field of inquiry. We identified: (i) current intra-disciplinary and interdisciplinary knowledge gaps in childhood ethics; and (ii) priorities for future research and development. A prominent problem, highlighted within and across disciplines, relates to how the best interests standard should be reconciled with the recognition of children as agents. This project makes an innovative contribution by promoting the development of interdisciplinary childhood ethics knowledge and standards, informing future improvements in childhood research and services.

Internet-based parent management training: A randomized controlled study

Enebrink, P., Högström, J., Forster, M., & Ghaderi, A. (2012)

OBJECTIVE:
The current study evaluated the efficacy of an Internet-based parent-training program for children with conduct problems. Dose-response ratio and costs for the program were also considered.
METHOD:
Parents of 104 children (aged 3-12 years) were randomly allocated to either parent training or a waitlist control condition. Diagnostic assessment was conducted at baseline and parent ratings of child externalizing behaviors and parent strategies were completed before and after treatment and at 6-month follow-up.
RESULTS:
At post-treatment assessment, children whose parent(s) had received the intervention showed a greater reduction in conduct problems compared to the waitlist children. Between group intent-to-treat effect sizes (Cohen's d) on the Eyberg Intensity and Problem scales were .42 and .72, respectively (study completers .66 and 1.08). In addition, parents in the intervention group reported less use of harsh and inconsistent discipline after the treatment, as well as more positive praise. Effects on behavior problems were maintained at 6-month follow-up.
CONCLUSIONS:
The results support the efficacy of parent training, administered through Internet, with outcomes comparable to many of the group-based parent training programs. The efficacy, low cost, and higher accessibility make this intervention a fitting part in a stepped-care model.

Interpersonal interactions and relationships (D710-D799).

Bailey SN, Lach LM, Byford-Richardson K. (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.

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice

Stover, C. S., Meadows, A. L., & Kaufman, J. (2009)

The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].

Into adulthood: a follow-up study of 718 young people who were placed in out-of-home care during their teens

Vinnerljung B, Sallnäs M. (2008)

In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.

Redmond, B., & Richardson, V. (2003)

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Keeping the family balance – adult daughters´ experiences of roles and strategies when supporting caring fathers

Sandberg, J., Eriksson, H., Holmgren, J., & Pringle, K. (2016)

The Scandinavian countries represent a progressive approach to gender equality and transitions of traditional gender roles but little attention has been paid to gender equality in old age and how normative constructions of gender intersect in the lives of family carers. The aim of this study was to understand how adult daughters experience their roles and strategies when supporting fathers caring for an ill mother. A sample of eight daughters shared their experiences through in-depth interviews. The findings show that the daughters provide substantial and crucial effort and are intimately involved in the caring for their father and the sole contributors towards the emotional support of their fathers. They tend to devote a lot of energy towards picturing their family as 'normal' in terms of the family members adopting traditional roles and activities inside as well as outside the family context. In conclusion, the lack of understanding about gender as a 'norm producer' is something that needs to be further elaborated upon in order for professionals to encounter norm-breaking behaviours. The daughters' position as family carers is often assumed and taken for granted since the intersecting structures that impact on the situations of the daughters are largely invisible.

De skandinaviska länderna representerar en progressiv syn på jämställdhet och förändringar av traditionella könsroller, men lite uppmärksamhet har riktats mot jämställdhet i hög ålder och vad som händer när normativa genuskonstruktioner möter erfarenheter hos äldre anhörigvårdare. Syftet med denna studie var att förstå hur vuxna döttrar erfar sina roller och strategier när de stödjer fäder som tar hand om en sjuk mor. Ett urval av åtta döttrar delade sina erfarenheter i djupintervjuer. Resultaten visar att döttrar ger betydande insatser och är intimt involverade i att ta hand om sin far och är den enda bidragsgivare av emotionellt stöd till sina fäder. Döttrarna ägnar stor energi att framställa familjesituationen som 'normal' genom att anta traditionella roller och verksamheter såväl inom som utanför familjen. Förståelse för genus som normskapare är något som måste beforskas ytterligare för att yrkesverksamma ska kunna möta normbrytande beteenden. Döttrars position som anhörigvårdare tas ofta förgiven eftersom de intersektionella strukturer som påverkar döttrar till vårdande fäder i stort sett är osynliga.

Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?

Sloper, P., Greco, V., Beecham, J., & Webb, R. (2006)

Background  Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.

Methods  A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).

Results  The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.

Conclusions  Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.

Lived experiences of being a father of an adult child with Schizofrenia

Nyström M, Svensson H. (2004)

The aim of this study is to analyze and describe lived experiences of being a father of an adult child with schizophrenia. Interpretations of interviews with seven Swedish fathers of sons or daughters with schizophrenia revealed a pattern of gradually changing existential consequences. After an initial period of shock when receiving the diagnosis, a long struggle to regain control follows. The findings are presented in a structure based on eight different aspects of this struggle, which seems to be characterized by a balance between grieving and adaptation. An important conclusion is that the fathers' life-world must be attended to in professional family interventions.

Longitudinal mediators of a randomized prevention program effect on cortisol for youth from parentally bereaved families

Luecken, L., Hagan, M.J, Sandler, I.N., Tein, J., Ayers, T.S., & Wolchik, S.A. (2014)

Abstract
We recently reported that a randomized controlled trial of a family-focused intervention for parentally bereaved youth predicted higher cortisol output 6 years later relative to a control group of bereaved youth (Luecken et al., Psychoneuroendocrinology 35, 785-789, 2010). The current study evaluated longitudinal mediators of the intervention effect on cortisol 6 years later. Parentally bereaved children (N = 139; mean age, 11.4; SD = 2.4; age range = 8-16 years; male; 61% Caucasian, 17% Hispanic, 7% African American, and 15% other ethnicities) were randomly assigned to the 12-week preventive intervention (n = 78) or a self-study control (n = 61) condition. Six years later (mean age, 17.5; SD, 2.4), cortisol was sampled as youth participated in a parent-child conflict interaction task. Using four waves of data across the 6 years, longitudinal mediators of the program impact on cortisol were evaluated. Program-induced increases in positive parenting, decreases in child exposure to negative life events, and lower externalizing symptoms significantly mediated the intervention effect on cortisol 6 years later.

Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities

Hastings, Richard, P. (2007)

Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.

Att fördela bistånd. Om handläggningsprocessen inom äldreomsorgen

Lindelöf, M. and E. Rönnbäck (2004)

The aim of this dissertation is to illustrate the manner in which assistance is distributed to the elderly according to the social services law in Sweden. It will focus on the processing officers/"street-level bureaucrats" who have been assigned, based on their profession, the task of assessing and deciding about the distributing of assistance. Central issues include the manner in which process officers go about their assignement and how their actual performance appears in comparision with the prescribed course of action. The dissertation´s starting pionts are in part, the legal regulations in the form of the social service law´s material and procedural rules, and in part the role as street-level bureaucrat and the construction of the client. The data which forms the basis for the conclusions of the dissertation consists of four studies conducted during the period 1995-2001. The first investigation - The Sundsvall study - is explorative and gives a first insight into how the process officers act and document the processing of a case. The process officers study is a national investigation with process officers from 27 municipalities. This second study focuses on the various ways to organise the handling process, and how these may influence the finding for assistance. The documentation study is also a national investigation of 29 municipalities. In this third study the written documentation of the case handling process is primarily exposed. Focus groups comprise the final sorce of data in which a group of processors in tree municipalities discuss their work. The process officers in the focus group describe several usual situations. With support from the various investigations, a picture appears which does not agree with prescribed course of action according to the legislation. What appears instead is a pattern of action which probably already existed before we began this work and which likely continues. This pattern of action has as we have established two faces, one of which constitutes an informal process where the actual construction of the "help-seeker" take place. Whitin the frame for this aspect, the so-called "service catalouge" has a decisive meaning, which in it´s own way is directed towards satisfying primarely physical and medical needs. The other "face" displays the formalised expresson of the informal process. This formal expression does not reveal all that is going on, only chosen elements. The action that we have found are institutionalized as an officially sanctioned institution since the practice is widely accepted and legitimized. The public intstitution is therefore built upon a pattern of action that consists both of formal rule, but primarily standards and routines which in many regards occur outside the formal rules. The consequences of a pattern of action that has been institutionalized and legitimized affects those seeking help who do not receive the individual assessment that they have a right to according to the law.

Att förverkliga rättigheter genom personlig assistans

Larsson, Monica (2008)

Doktorsavhandling 32

I denna avhandling undersöks på vilka sätt en juridisk och individuell rättighet som personlig assistans för människor med omfattande funktionshinder, kan förverkligas. Personlig assistans infördes 1994, som en del av lagen om stöd och service till vissa funktionshindrade (LSS). Avhandlingen fokuserar på hur förverkligandet kan ske främst genom lagstiftning, men också i praktiken med utgångspunkt ifrån rättighetens konstruktion.
Analysen är influerad av olika perspektiv, t.ex. rättsstatliga och välfärdsstatliga principer, men också av vissa centrala begrepp. De begrepp, som används för att förstå det empiriska materialet, är: rätt, norm och rättighet. Fallstudien används som forskningsstrategi och består av en dokumentstudie och en rättsfallsstudie. Därutöver används datamaterial från två empiriska studier där primärmaterial om personliga assistenter har samlats in.
Resultaten från studien visar att en social rättighet som personlig assistans är formad av det sammanhang och den tid den skapas i. Utformningen är också beroende av vilka intressenter som medverkar. En del av rättigheten personlig assistans är utformad som en juridisk rättighet och i rättslig mening stark. Olika normer om innehållet i rättigheten visar sig i på rättslig nivå och i praktiken. Grundläggande handikappolitiska intentioner om rättighen har påverkat praktiken och visar sig i denna som något ursprungligt och unikt. Rättigheten kan i denna mening förstås som förverkligad, även om den i stor utsträckning visar sig vara starkare som idé än som praktik.

Att ge omsorg mitt i livet: hur påverkar det arbete och försörjning?

Szebehely M, Ulmanen P, Sand A-B. (2014)

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet

Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.

Att ge omsorg mitt i livet: hur påverkar det arbete och försörjning?

Szebehely M., Ulmanen P., Sand Ann-Britt (2014)

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet

Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.

Att ge omsorg mitt i livet: hur påverkar det arbete och försörjning? Arbetsrapport 2014:1.

Szebehely, M., Ulmanen, P., & Sand, A.-B. (2014)

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under
våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms
universitet, inom ramen för projektet Anhörigomsorgens pris: Omsorgsansvar och förvärvsarbete
i medelåldern.
Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och
försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi
hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på
grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller
skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och
känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en
gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka,
make, partner eller vän.
Studien visar att 42 procent av både kvinnor och män i medelåldern ger anhörigomsorg
minst en gång i månaden. I genomsnitt ger kvinnor 5,4 timmar hjälp i veckan, män 3,8
timmar. Det är således lika vanligt att män som kvinnor är omsorgsgivare, men det är fler
kvinnor än män som ger omfattande omsorg: 6 procent av kvinnorna och 4 procent av
männen i befolkningen hjälper en närstående varje dag. I den gruppen ger kvinnorna i
genomsnitt 19 timmar hjälp i veckan, männen närmare 13 timmar.
Denna rapport visar att anhörigomsorg i dagens Sverige har betydande konsekvenser för
omsorgsgivarnas välbefinnande, vardagsliv, arbete och ekonomi. För både kvinnor och män
gäller att ju mer omsorg man ger, desto större är risken att drabbas. Samtidigt är det
vanligare bland kvinnor än bland män att omsorgsgivandet leder till negativa konsekvenser
på en rad områden.
Den allvarligaste formen av påverkan på arbetslivet är att minska sin arbetstid eller sluta
arbeta helt:
 Av dem som ger anhörigomsorg minst en gång i månaden har 13 procent av kvinnorna och 8
procent av männen minskat sin arbetstid, sagt upp sig eller gått i pension tidigare än planerat
som en konsekvens av omsorgsgivandet.
 Av dem som ger daglig hjälp är motsvarande andelar 32 procent av kvinnorna och 27 procent
av männen.
 Uppräknat till befolkningen har drygt 90 000 kvinnor och drygt 50 000 män i åldrarna 45-66
år minskat sin arbetstid eller lämnat sitt arbete på grund anhörigomsorg.
Många får minskade inkomster som en följd av anhörigomsorg:
 Av dem som ger anhörigomsorg minst en gång i månaden har 16 procent av kvinnorna och
11 procent av männen fått minskade inkomster på grund av omsorgsgivande.
 Av dem som ger daglig hjälp är motsvarande andelar 40 procent av kvinnorna och 32 procent
av männen.
5
 Uppräknat till befolkningen har 114 000 kvinnor och 75 000 män i åldrarna 45-66 år fått
minskade inkomster på grund av anhörigomsorg.
Kvinnors välbefinnande och vardagsliv påverkas mer än mäns av att ge anhörigomsorg, även
när vi tar hänsyn till att fler kvinnor ger omfattande hjälp:
 Att omsorgsgivandet upplevs som fysiskt eller psykiskt påfrestande är nästan dubbelt så
vanligt bland kvinnor som bland män som ger anhörigomsorg minst en gång i månaden. För
mer än hälften av dessa kvinnor är omsorgsgivandet psykiskt påfrestande och för en dryg
fjärdedel är det fysiskt påfrestande.
 Cirka fyra av tio kvinnor och omkring var fjärde man som hjälper minst en gång i månaden
har upplevt svårigheter att hinna med fritidsaktiviteter eller att umgås med vänner till följd
av omsorgsgivandet.
 Drygt 5 procent av kvinnorna och drygt 2 procent av männen som hjälper minst en gång i
månaden har blivit sjukskrivna mer än två veckor på grund av omsorgsgivandet.
 Bland dem som hjälper en närstående varje dag är alla dessa svårigheter betydligt vanligare,
framförallt bland kvinnor: tre fjärdedelar av de kvinnor som ger daglig omsorg upplever
omsorgsgivandet som psykiskt påfrestande och lika många har svårt att hinna med
fritidsaktiviteter eller att umgås med vänner; drygt hälften upplever omsorgsgivandet som
fysiskt ansträngande och nästan var femte har blivit sjukskrivna i mer två veckor. Även
många män som ger daglig omsorg är påverkade på dessa sätt, men i mindre utsträckning.
Anhörigomsorg påverkar arbetssituationen i samma utsträckning för både kvinnor och män,
förutom vad gäller svårigheter att fokusera på arbetet som drabbar fler kvinnor:
 För mellan 12 och 19 procent av dem som ger anhörigomsorg minst en gång i månaden har
omsorgsgivandet medfört svårigheter att hålla sina arbetstider, att hinna med sina
arbetsuppgifter, att tacka ja till övertid eller nya uppdrag, eller att de förhindrats att delta i
möten eller kurser.
 Av dem som ger daglig hjälp är motsvarande andelar mellan 33 och 39 procent.
 På en punkt påverkas kvinnors arbetssituation betydligt mer än mäns av anhörigomsorg: 30
procent av de kvinnor som ger hjälp minst en gång i månaden har haft svårigheter att
fokusera på arbetet jämfört med 15 procent av männen.
Att använda semesterdagar eller andra former av betald eller obetald ledighet från arbetet
under enstaka dagar för att ge anhörigomsorg är vanligt bland både kvinnor och män. Längre
ledigheter, särskilt de som är betalda, är däremot mycket ovanliga:
 Hälften av både kvinnor och män som ger anhörigomsorg minst en gång i månaden har
använt kompledighet eller flex för att ge omsorg.
 Av dem som ger hjälp minst en gång i månaden har fyra av tio kvinnor och tre av tio män
använt semesterdagar för att ge omsorg.
 Färre än 2 procent av dem som ger hjälp minst en gång i månaden har haft närståendepenning
och endast en halv procent har varit tjänstlediga med lön under mer än två veckor
för att ge omsorg, medan drygt 2 procent har haft motsvarande tjänstledighet utan lön.
 Var tionde av dem som ger daglig hjälp har varit tjänstlediga utan lön under mer än två
veckor, vilket är tio gånger fler än de som varit tjänstlediga med lön under motsvarande
period.
6
Denna rapport visar att många kvinnor och män betalar ett högt pris för att ge anhörigomsorg
och att priset är högre ju mer omsorg de ger. En klar majoritet av de drabbade är
omsorgsgivare till äldre. Samtidigt vet vi att de flesta äldre är nöjda med äldreomsorgen och
föredrar att få hjälp därifrån, snarare än från barnen eller andra släktingar. Andelen av
hjälpbehövande äldre som får hjälp av sina barn ökat under flera decennier, samtidigt som
andelen av de äldre som får del av äldreomsorgen har minskat. Särskilt allvarlig är de senaste
årens dramatiska minskning av äldreboenden – nästan var fjärde plats har försvunnit under
2000-talet.
För att anhörigomsorg ska kunna vara ett så frivilligt val som möjligt för både den som
behöver omsorg och hans eller hennes anhöriga, krävs att samhället erbjuder olika former av
omsorgsinsatser som svarar mot individuella behov och vardagsvanor hos både äldre och
anhöriga. En väl utbyggd och väl fungerande äldreomsorg är en förutsättning för att
anhöriga till omsorgsbehövande äldre ska kunna förvärvsarbeta och försörja sig på samma
villkor som andra.

Att göra etnicitet : Inom äldreomsorgen (Malmö studies in international migration and ethnic relations).

Lill, L. (2007)

Avhandling

This dissertatian i concerned with the ways in which caregivers within elderly care reason and respond to questions concerning ethnicity. The research is based on a discursive analysis of a focus group study; interwiews with caregivers; and participant observation from fieldwork within one elderly care team. The main ambition is to present an alternative model for understanding how ethnicity becomes important in relation to care. A primary purpose it to place elderly care within a new theoretical perspective, particularly by shifting the focus from ethnicity per se to the relational aspect of constructions of ethnicity. I do that by showing how the ethnic dimension often is located in language use, in the relations created by various discourses and their institutional conditions. By applying the concept of doing to the analysis of ethnicity, I can show how ethnicity is a product of social interaction rather than a pre-defined role or mode of being. To do ethnicity in the context of care giving is to be assigned and take discursively created subject positions through the constant interactions of the workplace. Through such an analysis it becomes possible to understand ethnicity and ethnic relations as a continuous process revolving around the conceptions of each other's identities. By employing doing ethnicity as an analytical tool, it becomes possible to understand how caregivers, sometimes unwittingly, use ethnicity as a marker for thier constructions of care.

Att leva med psykiska funktionshinder-livssituation och effektiva vård-och stödinsatser

Brunt D, Hansson L. (2005)

Den psykiatriska vården och det offentliga stödsystemet för personer med psykisk funktionsnedsättning är i dag huvudsakligen ett samhälls­baserat servicesystem med tyngdpunkt i öppna vårdformer. Det finns emellertid uppenbara brister i systemets förmåga att möta vård- och stödbehovet hos dessa personer, liksom det finns övergripande brister i deras livssituation i samhället som helhet. Trots omfattande reformer kännetecknas fortfarande situationen för personer med psykiska funktionshinder i många avseenden av diskriminering och andra former av stigmatisering samt ekonomisk, social och politisk marginalisering och maktlöshet. Upplevelser av bristande medinflytande och kontroll över den egna vård- och stödsituationen påverkar dem också negativt.

Trots svårigheter att implementera evidensbaserade och effektiva insatser samt starka vetenskapliga belägg för att de reformer som genomdrivits i syfte att förbättra livssituationen i många avseenden inte har nått målen, finns det ändå anledning till optimism. Det här är den andra reviderade upplagan av boken, och här redovisas rehabiliteringsinsatser och andra interventioner som visar att det finns effektiva sätt att förändra situationen.

Att leva med psykisk funktionsnedsättning vänder sig till studerande inom sociala eller vårdinriktade högskoleutbildningar, men också till personer inom vård- och stödverksamheter som i arbetet möter personer med psykiska funktionsnedsättningar.

Att möta det oväntade – tidigt föräldraskap till barn med Downs Syndrom.

Riddersporre, B. (2003)

Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.

Att möta det oväntade – tidigt föräldraskap till barn med Downs Syndrom. (Avhandling)

Riddersporre, B (2003)

Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.

Att möta det oväntade. Tidigt föräldraskap till barn med Downs syndrom

Riddersporre, Bim (2003)

Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.

Att möta familjer inom vård och omsorg.

Benzein, E., Hagberg, M., & Saveman, B.-I. (Eds.). (2012)

En individ befinner sig alltid i ett sammanhang. Därför är det av stor betydelse att fokusera välbefinnande och hälsa utifrån ett familjeperspektiv. Familjen spelar en allt större roll inom vård och omsorg och har fått allt större betydelse även för vård- och omsorgspersonal. Att hjälpa familjen att se styrkor och resurser för att hantera situationer av ohälsa och sjukdom är därför en viktig del i omvårdnadsarbetet.

Att möta familjer inom vård och omsorg beskriver teoretiska grunder för familjefokuserad omvårdnad och ger konkreta exempel från olika kontexter. Här presenteras också hur ett familjefokuserat synsätt kan implementeras i vård, omsorg och forskning som ett komplement till rådande perspektiv i vården, såsom till exempel personcentrerad vård, patientcentrerad vård och anhörigvård. Boken vänder sig till studenter inom vård och omsorg på grund- och avancerad nivå, samt till yrkesverksamma, anhörigvårdare, eller andra med intresse för familjers situation när en familjemedlem drabbas av ohälsa eller sjukdom.

Att möta flyktingar

Angel, B., & Hjern , A. (2004)

Boken ger grundläggande kunskaper om flyktingars livsvillkor i ursprungslandet och i exilen. Den tar upp upplevda traumatiska händelser som politisk förföljelse, förtryck, fängelse, krig och allvarliga förluster.

Mötet mellan flyktingen och Sverige och den psykologiska process som därvid uppstår – flyktingkrisen – analyseras också.

En avsevärd del av boken ägnas insatser och åtgärder för nyanlända flyktingar.

Att möta flyktingar vänder sig i första hand till studenter och personal inom vården och socialtjänsten. Även andra som möter flyktingar inom t.ex. skolor, frivilligorganisationer eller på förläggningar kan ha nytta av den.

Att möta och bemöta anhöriga i äldreomsorgen

Normann, M., & Fröling, K (2008)

Nära och kära - att möta och bemöta anhöriga i äldreomsorgen ger dig som arbetar i äldreomsorgen vägledning i vad som är viktigt att tänka på i mötet med de anhöriga. Bokens första del handlar om människans villkor och förutsättningar för kommunikation och är giltiga för de flesta arbetsplatser inom vård och omsorg. I bokens andra del anpassas kunskaperna på mötet med anhöriga och anhörigvårdare till äldre, sjuka och funktionshindrade. I boken finns också förslag till reflektioner, egna och i grupp, samt tips för vidare läsning.

Den senaste upplagan, utgiven oktober 2010, är utökad med ett kapitel som beskriver en äldres situation ur fem olika perspektiv: den anhöriga, sjukgymnasten, kontaktpersonen, chefen på äldreboendet samt biståndshandläggaren. Alla skapar sin bild utifrån sina förutsättningar och kapitlet ger en insikt i den komplexitet som finns inom äldreomsorgen.

Nära och kära är skriven för personal inom äldreomsorgen. Men den får gärna inspirera alla som i sitt yrke möter anhöriga! Författare är Margareta Normann och Kristina Fröling .

Att pussla ihop ett liv : om samverkan

Swärd A-K., Franke M-L. (2007)

Den enda existerande bokenom samverkan från ett föräldraperspektiv! Den teoretiska delen om autism är mycket lättförståelig och problematiseringen utgår från FN:s regler om funtionshider som ett problem i relation till omgivningen. Texten föreslår ett förhållningssätt som bygger på samarbete kring barnets starka sidor. Boken granska också kritiskt kommunernas förmåga att organisera hjälp och stöd för de drabbade familjerna enligt LSS-lagstiftningen

Att släppa taget om den andre och att greppa tag om sig själv

Wiberg, Maria (2006)

Upplands Väsby kommun tillhör en av de få kommuner i landet som bedriver ett strukturerat
anhörigprogram. Trots att det funnits någon form av anhörigarbete i ca 15 år, de senaste 5 åren
med tydligare struktur, har verksamheten hittills inte dokumenterats.

Syftet med denna rapport är att ge en utförlig beskrivning av anhörigprogrammets innehåll,
struktur och förutsättningar. Rapporten vill också skapa en förståelse för den anhöriges
livssituation och behov av egen hjälp. "Vad familjen behöver är undervisning om drogen alkohol,
vilka problem det kroniska missbruket ger upphov till samt sjukdomen alkoholism. Familjen
behöver dessutom lära sig hur sjukdomssymtomen påverkar familjen. Familjen behöver även
hjälp med att kartlägga det egna beteendet för att förstå hur det kan överensstämma med, eller till
och med befrämja alkoholistens drickande. De måste också komma till insikt om sina egna
känslor för att realistiskt kunna förstå problemets dimensioner och vad som krävs av dem. Till
följd av detta måste de undersöka vilka alternativ de har att välja mellan för att lösa problemet.
Framför allt behöver familjemedlemmarna stöd och uppmuntran för att kunna leva sina egna liv
trots alkoholismen. Genom att göra det ökar, paradoxalt nog, chanserna att avbryta den
alkoholistiska processen" (Kinney o Leaton 1997).
Ytterligare ett syfte med rapporten är att mäta om programmet ökar den anhöriges psykiska
välbefinnande, och om programmet påverkar den anhörige beteendemönster och känslor i
relation till den beroende.
Metoden jag använt för att hitta svaren på den första frågan har varit att sammanställa det
material som finns runt de olika temana.
För att få svar på de två andra frågeställningarna har jag använt en självskattningsenkät. Dvs.
deltagarna har själva uppskattat sitt mående utifrån en enkät med 4 svarsalternativ. Mätningen har
skett vid tre tillfällen, före programmet, vid programmets slut och en månad efter programmets
slut. Antal deltagare i utvärderingen är 15 personer, uppdelat på tre olika anhörigprogram.
En svaghet med denna metod är att utvärderingen sträcker sig under en relativt kort tid. Från
första till sista mättillfället är det ca 12 veckor. Förändringsprocesser tar lång tid och för att få en
mer rättvis bild av programmets påverkan skulle en mätning efter ytterligare ett år behövas.
En ytterligare svaghet är att deltagarantalet i utvärderingen är litet. Det går därför inte att dra
några stora slutsatser av resultatet, utan snarare tendenser. Det är dock en god ansats till ett
fortsatt arbete med utvärdering av programmet. Självskattningsenkät har visat sig vara ett
fungerande kvalitetsmätningsinstrument.
Dispositionen på rapporten är följande: Del 1 innehåller den beskrivande delen av
anhörigprogrammet med en historisk tillbakablick. Del 2 är den utvärderande delen av rapporten,
där undersökningsmetoden och sammanställningen av enkätundersökningarna redovisas.
Resultaten visar att det psykiska välbefinnandet tydligt ökar för alla tre grupper över tid. Takten
för ökningen ser olika ut och det kan härledas till deltagarnas olika livssituationer under
programmet. Där deltagarna fortfarande lever med partner i ett aktivt missbruk är den anhöriges
förändring långsammare. Resultatet visar också att deltagarna upplever en förändring i huruvida
de påverkats av sin anhöriges missbruk i såväl känslor som beteendemönster. Denna förändring
är mindre samstämmig och visar ganska stora variationer i de olika grupperna.

Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar

Skerfving, Annemi (2005)

Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.

Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar

Skerfving, A. (2005)

Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.

Att tala samma språk. Gemensam struktur vid bedömning av vårdbidrag

Enström Öst C, Agdalen T, Aydin E, Josephson M, Mirjam W. (2013)

Syftet med studien är att pröva om struktur och språk enligt Klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY, kan användas vid handläggning av vårdbidragsärenden för att göra utredningar och beslut tydligare och mer enhetliga och därigenom förbättra rättssäkerheten. I tillämpningen av reglerna om vårdbidrag ska Försäkringskassan göra en individuell bedömning i varje enskilt ärende. Det finns också krav på likformighet och transparens i handläggningen. ICF-CY är utvecklat av Världshälsoorganisationen (WHO) och erbjuder ett universellt gemensamt språk för att underlätta dokumentation och kartläggning av barnets funktionsförmåga och hälsa i sin miljö.

Vårdbidraget är ett statligt stöd till föräldrar med barn som har en funktionsnedsättning. Syftet med vårdbidraget är att föräldrarna ska ha möjlighet att ge den tillsyn, vård och stöd som krävs för att barnet ska kunna utvecklas på bästa sätt.

Registeranalysen i rapporten visar på skillnader i vårdbidragets omfattning utifrån bland annat region, kön och mottagarens socioekonomiska tillhörighet. Tyvärr kan man inte säga om dessa skillnader är sakliga eller osakliga, det vill säga om de skillnader som observeras kan förklaras av barnens bedömda tillsyns- och vårdbehov.

Det finns inga uppgifter i register om grunderna för ett beviljat vårdbidrag, det vill säga vilken funktionsförmåga eller vilket tillsyns- och vårdbehov barnet har. I den här studien har information i 264 ärenden gällande förstagångsansökningar om vårdbidrag översatts till struktur och språk i ICF-CY. Rapporten redovisar det som finns skrivet om hur barnet fungerar i sin miljö när innehållet har översatts och tolkats.

När innehållet i utredningarna översätts, handlar merparten av utredningarna, både Försäkringskassans sammanfattningar och motiven för beslut som skickas till den sökande, om sådant som barnen kan göra och faktiskt gör, eller har svårigheter att utföra. Merparten av utredningarna berör aspekter på hur barnet genomför enstaka eller flera uppgifter och hur de hanterar krav medan endast ett fåtal utredningar handlar om hur barnet genomför dagliga sysslor och uppgifter som att ta hand om personliga föremål och att hjälpa andra.

Resultaten tyder på att en tillämpning av struktur och språk enligt ICF-CY i handläggningen av vårdbidrag skulle öka likformigheten, samtidigt som man skulle undvika att samla in irrelevant information och därigenom kunna spara tid i handläggningen. Om man klassificerar funktionsnedsättning på detta sätt, blir det också möjligt att dokumentera funktionsnedsättning i register på samma sätt som diagnos registreras idag, vilket underlättar utvärdering.

Att utveckla anhörigstöd

Genell Andrén K, Johansson L. (2008)

Anhöriga gör stora insatser i vården och omsorgen av sina närstående. Men som anhörig kan man också behöva stöd och avlastning.

Att utveckla anhörigstöd

Matheny G. (2013)

Att utveckla anhörigstöd
Vilka är de personer som stöttar och vårdar en närstående, vilket stöd efterfrågar de och vad kan samhället och den enskilda arbetsplatsen erbjuda? Vilken värdegrund styr bilden av de anhöriga – ses de som en värdefull resurs eller är de en belastning i arbetet kring den närstående?

Ett sätt att uppfylla målen med gällande lagstiftning är att arbetsplatserna ska formulera rutiner för hur de ska stötta och samarbeta med anhöriga i det dagliga arbetet. Boken ger praktiska verktyg för hur man steg för steg, med de anhöriga själva som sakkunniga, kan utveckla arbetsplatsens anhörigstöd. Författaren beskriver den anhörigvänliga arbetsplatsen och ger ett konkret förslag till hur rutiner för anhörigstöd och anhörigsamverkan kan tas fram. Innehållet presenteras på ett lättillgängligt sätt och läsaren får många fallbeskrivningar och förslag till diskussionsämnen att utgå ifrån.

Att utveckla anhörigstöd vänder sig till arbetsgrupper/verksamheter inom vård och omsorg samt socialtjänst som vill utveckla arbetsplatsens anhörigstöd. Utvecklingsarbetet föreslås ske genom att arbetsgruppen möts vid ett antal reflektionsträffar kring bokens innehåll. Boken vänder sig både till baspersonal och ledare, och den kan dessutom utgöra ett handfast verktyg för anhörigombud och anhörigkonsulenter som utbildar och handleder arbetsgrupper inom området anhörigstöd.

Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp

Ekenberg, L. (2010)

Syftet med denna satsning på anhörigstöd var att pröva och utveckla en mo-dell för anhörigstöd med Basal Kroppskännedom (BK) och samtalsstöd i grupp vid Länsenheten Råd och Stöd i Norrbotten. Förberedelsearbetet bestod av en kurs i BK och samtal för en sjukgymnast och en kurator. Dessa två konstruerade en enkät med frågor om den anhöri-ges relation till vårdtagaren, upplevelse av anhörigrollen, upplevelse av stöd-insatser och den anhöriges behov av förändringar. Enkäten konstruerades med idéer från ett frågeformulär använt i Socialstyrelsens "Anhörig 300" projekt. Sjukgymnasten ledde en femdagars utbildning i BK för Länsenhe-tens alla kuratorer. Sex anhöriggrupper med BK och samtal i grupp genomfördes under åren 2005-2009, en i Kalix, en i Piteå och fyra anhöriggrupper i Luleå. Antalet gruppträffar varierade mellan 8-11 träffar. I anhöriggruppen i Kalix deltog fem kvinnor, som var och en levde tillsam-mans med en man med någon form av funktionsnedsättning. I Piteå deltog två män och tre kvinnor. Tre levde i en make/maka relation, två var föräldrar och en anhörig hade ett syskon med funktionsnedsättning. I Luleå genom-fördes fyra anhöriggrupper. Anhörigkonstellationen i grupperna var män och kvinnor med anhörigrelation som make/maka och föräldrar till vuxna barn med funktionsnedsättningar. Enkätutvärdering skedde i fem anhöriggrupper som besvarades vid tre tillfäl-len: 1) vid start av anhöriggrupp 2) vid kursavslut och 3) vid uppföljning cirka 6 månader efter kursavslut. Deltagarna gavs utrymme till att direkt ef-ter BK-övningarna göra anteckningar om sina upplevelser direkt efter BK-övningarnas genomförande före gruppsamtalen. I en anhöriggrupp i Luleå var deltagandet så lågt att grupprocessen uteblev. I Kalix- Piteå- och två Lu-leågrupper medverkade deltagarna i en individuell processutvärdering om kroppsupplevelser. Resultaten av den individuella processutvärderingen visade att deltagarna upplevde BK-övningarna, som en möjlighet till en egen skön stund med av-slappning utan prestation. För många ledde detta till en större lyhördhet för kroppens signaler t.ex. om hur det är i relationen och att lägga märke till sina egna behov. Efter hand utvecklades tilliten i grupperna då deltagarna utifrån sin egen tillitsprocess öppnade sig och "vågade börja berätta". Enkätutvärde-ringen visade på marginella förändringar i skattningen av anhörigsituationen. I skattningarna framkom för makar en svag trend mot en något sämre upple-velse av anhörigsituationen medan föräldrarnas skattningar visade en svag trend mot en något bättre upplevelse av sin anhörigsituation. Kommentarer-na i enkäten bekräftade denna trend. Vår erfarenhet är att BK-övningar och samtal i grupp för anhöriga kräver en noggrann förberedelse och ett fruktbart möte/samarbete mellan kurator, sjukgymnast och gruppdeltagare. I NkAs kunskapsöversikt och i NkAs lärande nätverk framhålls Mö-tet/samtalet som "kanske som det mest underskattade anhörigstödet" (Win-qvist, 2010). Eftersom denna form av stöd saknas i dagens anhörigstöd anser vi att vår modell är ett viktigt bidrag, som borde prövas och utvärderas i stör-re skala.

Att utveckla stödet till anhöriga : en kartläggning av anhörigstöd på Östermalm

Hjalmarson, I., Norman, E. (2012)

Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.

Att utveckla stödet till anhöriga. En kartläggning av anhörigstöd på Östermalm

Hjalmarsson, Ingrid & Norman, Eva (2012)

Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.

Augmentative and Alternative Communication – Supporting Children and Adults with Complex Communication Needs

Beukelman, D. R. och Mirenda, P. (2013)

As AAC use continues to flourish and new technology revolutionizes the field, tomorrow's service providers need current, authoritative information on AAC for children and adults with communication disorders. That's why David Beukelman and Pat Mirenda have revised and updated the bestselling Augmentative and Alternative Communication—the trusted, widely adopted graduate-level text on communication disorders and AAC. The foundational textbook for SLPs, OTs, PTs, teachers, and other professionals in clinical and educational settings, this fourth edition is a definitive introduction to AAC processes, interventions, and technologies that help people best meet their daily communication needs. Future professionals will prepare for their work in the field with critical new information on
advancing literacy skills (new chapter by Janice Light and David McNaughton)
conducting effective, culturally appropriate assessment to determine AAC needs
choosing AAC interventions appropriate for age and ability
selecting AAC vocabulary tailored to individual needs
using new consumer technologies as easy, affordable, and non-stigmatizing communication devices
understanding types of symbols and how individuals use them
promoting social competence
supporting language learning and development
providing effective support to beginning communicators
planning an inclusive education for students with complex communication needs
Readers will get a thorough overview of communication and AAC issues for people with specific developmental disabilities (including cerebral palsy, intellectual disability, and autism) and acquired disabilities (such as aphasia, traumatic brain injury, and degenerative cognitive and linguistic disorders). And with helpful photos, figures, and photocopiable forms, readers will be ready to collect and use important information on assessment, individual communication needs, classroom supports, and more.
An essential core text for tomorrow's professionals—and a key reference for inservice practitioners—this new fourth edition expertly prepares readers to support the communicative competence of children and adults with a wide range of complex needs.

Augmentative and alternative communication systems: Considerations for individuals with severe intellectual disabilities

Romski, M. A., & Sevcik, R. (1988)

Augmentative and alternative communication (AAC) research and intervention for individuals with severe intellectual disabilities has advanced significantly in the last 5 years. This paper provides an integrated review of the current literature in this area, suggests future research directions, and delineates clinical and educational implications. The integration of behavioral and technological advances in the AAC field provides an optimistic outlook for the future development of functional communication systems for persons with severe intellectual disabilities.

Augmentative communication based on realtime vocal cord vibration detection

Falk TH, Chan J, Duez P, Teachman G, Chau T. (2010)

A binary switch based on the detection of periodic vocal cord vibrations is proposed for individuals with multiple and severe disabilities. The system offers three major advantages over existing speech-based access technologies, namely, insensitivity to environment noise, increased robustness against user-generated artifacts such as coughs, and reduced exertion during prolonged usage periods. The proposed system makes use of a dual-axis accelerometer placed noninvasively in proximity of the vocal cords by means of a neckband. Periodic vocal cord vibrations are detected using the normalized cross-correlation function computed from anteriorposterior and superiorinferior accelerometry signals. Experiments with a participant with hypotonic cerebral palsy show the proposed system outperforming a popular commercial sound-based system in terms of sensitivity, task time, and user-perceived exertion. © 2010 IEEE.

Awareness of carer distress in people with dementia

Ablitt, A., Jones, G., & Muers, J. (2010)

OBJECTIVES: People caring for family members who have dementia often experience considerable levels of anxiety and depression. However, relatively little is known about the awareness of carer distress among people with dementia. This study investigated whether or not people with dementia are aware of the level of distress experienced by their carers.
METHOD: Two groups of participants were studied, a dementia group and a control group of people with arthritis. Each group consisted of pairs of people, the person with dementia or arthritis and the family member who acted as their main carer; 40 pairs participated in total. For both groups, the carer's psychological health was rated by the carer themselves and by the care-recipient, using the Hospital Anxiety and Depression Scale. For the dementia group, memory functioning in the person with dementia was rated by the care-recipient themselves and by the carer, using the Memory Function Scale. The ratings made by the carer and care-recipient were compared to give an indication of the level of awareness in the care-recipient.
RESULTS: People with dementia have a significant level of awareness of their carers' state of psychological health. Their awareness follows the same pattern as that shown by a control group of people with arthritis. The level of awareness of carer psychological health shown by the dementia group was not related to their level of awareness of their own memory difficulties.
CONCLUSION: The clinical implications of awareness of carer distress in people with dementia should be considered.

Survivors of suicide do grieve differently: Empirical evidence for a common sense proposition

Bailley, S.E., Kral, M.J., & Dunham, K. (1999)

Previous empirical investigations have produced mixed results on the question of whether mode of death differentially affects grief. To further investigate the influence of suicide on grief, 350 previously bereaved university students completed a questionnaire package consisting of several standardized measures. Participants were separated into four groups based on the mode of death experienced as either survivors of suicide (n = 34), accident (n = 57), unanticipated natural (n = 102), or anticipated natural (n = 157) deaths. Hierarchical multiple regression analyses indicated that suicide survivors, compared against the other groups, experienced more frequent feelings of rejection, responsibility, "unique" reactions, and more total grief reactions. Trends indicating increased levels of shame and perceived stigmatization were also evident. Aggregate factors of death "naturalness" and "expectedness" showed less influence than mode of death in influencing grief. Overall, results support previous clinical and research findings and intuitive logic in demonstrating that the grief experienced by suicide survivors includes elements that are less frequently seen in the case of nonsuicidal deaths.

The Behavior Management Flow Chart: a component analysis of behavior management strategies

Danforth, J. S. (1998)

Representative published child behavior management research was reviewed. Based upon the review, a task analysis of child behavior management strategies was conducted. The Behavior Management Flow Chart is a flow chart of the task analysis that synthesizes the research into a cohesive unit and visually depicts actions that adults may be trained to use to manage misbehavior displayed by disruptive children. A discussion compares and contrasts the Behavior Management Flow Chart with Hanf-model behavior management programs, the appropriate unit of analysis is examined, and concerns regarding integrating a wide range of research variables into a unitary model are addressed.

The child´s worries about the mother´s breast cancer: Sources of distress in school-age children

Zahlis, E.H. (2001)

Abstract
PURPOSE/OBJECTIVES:
To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer.
DESIGN:
Descriptive, qualitative study.
SETTING:
Private family homes.
SAMPLE:
Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer.
METHODS:
Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer.
MAIN RESEARCH VARIABLES:
Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses.
FINDINGS:
The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer.
CONCLUSIONS:
Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.
IMPLICATIONS FOR NURSING PRACTICE:
Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.

The Consequences of Attention-Deficit/Hyperactivity Disorder in Adults

Goodman, D. W. (2007)

Until recently, attention-deficit/hyperactivity disorder (ADHD) was a diagnosis reserved for children and adolescents as it was believed to dissipate before adulthood. New evidence, however, supports the persistence of ADHD beyond adolescence, and it is now recognized as a chronic neurobehavioral disorder in adults. Adults with ADHD have difficulties with school, work, family interactions, and social activities. Although treatments are available for adult ADHD, many patients never receive an accurate diagnosis that would afford them appropriate therapeutic intervention. If left untreated, adult ADHD can cause significant personal, social, and economic burdens that can have a negative impact on overall quality of life. This article discusses how ADHD presents in adults and the effects of the disorder on educational, occupational, interpersonal, and social functioning. Currently available treatments for ADHD in adults are also reviewed.

The coping experiences of carer´s who live with someone who has schizophrenia.

Huang X, Sun F, Yen W, Fu C. (2008)

AIMS AND OBJECTIVES:
The purpose of this study was to understand the coping experiences of carers living with a schizophrenic family member. Our research may be a valuable reference for mental health professionals seeking to improve the quality of care for people with schizophrenia and their carers.
DESIGN:
We employed a qualitative descriptive phenomenological research methodology to understand the coping experiences of carers living with a schizophrenic family member.
METHODS:
Purposive sampling and in-depth, face-to-face interviews were used to collect data. When data saturation was reached, the sample size comprised 10 carers (five men and five women). The interview focused on the carer's coping experience. During the process of data collection and data analyis we established epoches (bracketing) and returned to the reality of the carers' experience to keep the data objective. Narratives were analysed according to Colaizzi's seven steps method.
RESULTS:
The two most commonly used coping mechanisms that emerged from this study were psychological coping strategies (cognitive, behavioural and emotional) and social coping strategies (religious, social and professional support). Furthermore, three factors were found in the study, including low social status, traditional help-seeking behaviours and feelings of shame.
CONCLUSION:
Findings from this study demonstrate the importance of understanding the coping experiences of carers who have a family member with schizophrenia. Further research is needed to identify more important detailed factors that affect the coping strategies of carers. Relevance to clinical practice. Community mental health care professionals need to improve the quality of care for helping carers living with a family member who has schizophrenia. It is important to develop effective coping intervention strategies that help carers cope with the stress and strain of caring for a family member with schizophrenia.

The definition of disability: what is in a name

Leonardi M, Bickenbach J, Ustun TB, Kostanjsek N, Chatterji S. (2006)

The definition of the word disability has been debated for the UN Convention on the Rights of Persons with Disabilities, and the final draft will soon be submitted to the UN General Assembly for approval.1 WHO has been mandated to produce a world report on disability and rehabilitation by 2009 to collate the best evidence about the prevalence, distribution, and trends of disability and recommend action.2

The earnings of informal carers: Wage differentials and opportunity costs

Heitmueller A, Inglis K. (2007)

Abstract: A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial.

The economic consequences of autistic spectrum disorder among children in a Swedish municipality

Järbrink, Krister (2007)

In this study, the societal economic consequences of autistic spectrum disorder were investigated using a sample of parents of children identified with the disorder and living in a Swedish municipality. Cost information was collected using a postal questionnaire that was developed through experiences gained from an earlier study. Using conservative assumptions, the additional societal cost due to the disorder was estimated to be approximately 50,000 annually per child. Parents of children with the disorder spent an average of about 1000 hours per year additionally caring for and supporting their child. The study indicates that the major cost drivers for autistic spectrum disorder among children can be found within the community for support and schooling, while the major impact on relatives is on time spent and thereby quality of life rather than a financial burden.

The effect of color on the recognition and use of line drawings by children with severe intellectual disabilities

Stephenson, J. (2007)

Line drawings are commonly used as communication symbols for individuals with severe intellectual disabilities. This study investigated the effect of color on the recognition and use of line drawings by young children with severe intellectual disabilities and poor verbal comprehension who were beginning picture users. Drawings where the color of the picture matched the object and where the color of the drawing did not match the object were used, as well as black and white line drawings. Tentative findings suggest that some students with intellectual disabilities may find it more difficult to recognize and line drawings where the color does not match the object compared to line drawings where the color of the drawing does match the color of the object.

The effectiveness of bereavement interventions with children: a meta-analytic review of controlled outcome research

Currier, J.M., Holland, J.M., & Neimeyer, R.A. (2007)

Abstract
Grief therapies with children are becoming increasingly popular in the mental health community. Nonetheless, questions persist about how well these treatments actually help with children's adjustment to the death of a loved one. This study used meta-analytic techniques to evaluate the general effectiveness of bereavement interventions with children. A thorough quantitative review of the existing controlled outcome literature (n = 13) yielded a conclusion akin to earlier reviews of grief therapy with adults, namely that the child grief interventions do not appear to generate the positive outcomes of other professional psychotherapeutic interventions. However, studies that intervened in a time-sensitive manner and those that implemented specific selection criteria produced better outcomes than investigations that did not attend to these factors.

The effectiveness of Talking Mats® with people with intellectual disability

Murphy, J., & Cameron, L. (2008)

People with intellectual disability have significant difficulties in ensuring their voice is heard. Talking Mats is a low tech communication resource which helps understanding and supports expression. This study examined the effectiveness of the resource for people with intellectual disability. A mixed method quantitative and qualitative study involving 48 people at four levels of comprehension was designed to compare the effectiveness of Talking Mats with the individual's main communication method. Thirty of the 48 participants were identified as using Talking Mats effectively. Effective use of Talking Mats was associated with functional comprehension. The study found that scores on all indicators of communication effectiveness were higher when using Talking Mats compared to main communication methods. This study identified that Talking Mats can be an effective communication resource for many people with intellectual difficulty and can help them express their views by increasing both the quantity and quality of information communicated.

The effects of child maltreatment and polymorphisms of the serotonin transporter and dopamine D4 receptor genes on infant attachment and intervention efficacy

CICCHETTI, D., ROGOSCH, F. A. & TOTH, S. L. (2011)

This investigation examined the extent to which polymorphisms of the serotonin transporter linked promoter region (5-HTTLPR) and the dopamine receptor D4 (DRD4) genes differentially influenced the development of attachment security and disorganization in maltreated and nonmaltreated infants at age 13 months, and the extent to which the efficacy of preventive interventions to promote attachment security were influenced by genetic variation. The sample consisted of 106 infants from maltreating families, participating in a randomized control trial evaluating the efficacy of two interventions, child-parent psychotherapy and psychoeducational parenting intervention, and 47 infants from nonmaltreating families. DNA samples were genotyped for polymorphisms of 5-HTTLPR, DRD4 exon III variable number tandem repeat, and DRD4-521. Attachment organization at age 1 and at age 2 was assessed with the Strange Situation for all participants, prior to and following the completion of the interventions. High rates of disorganized attachment were observed in the maltreatment compared to the nonmaltreatment group, and both interventions resulted in increased rates of attachment security at age 2. Genetic variation did not influence improvement in attachment organization among maltreated infants. Among maltreated infants, genetic variation had minimal effect on attachment organization. In contrast, among nonmaltreated infants, 5-HTTLPR and DRD4 polymorphisms influenced attachment security and disorganization at age 2 and the stability of attachment disorganization over time.

The Efficacy of Cognitive Behavioral Therapy for Adults With ADHD: A Systematic Review and Meta-Analysis of Randomized Controlled Trials

Young, Z., Moghaddam, N., & Tickle, A. (2016)

OBJECTIVE:
To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms.

METHOD:
A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted.

RESULTS:
Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004).

CONCLUSION:
These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.

The iconicity of picture communication symbols for children with English additional language and mild intellectual disability

Dada, S., Huguet, A., & Bornman, J. (2013)

The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.

The impact of hippotherapy on grieving children

Glazer, H.R., Clark, M.D. & Stein, D.S. (2004)

ABSTRACT This article looks at the use of therapeutic riding, or hippotherapy, with children who are mourning the death of a family member. Therapeutic riding is the summer program that is part of the Evergreen support group for grieving school-age children and their families. A qualitative study of the impact of the riding program is presented. The research question was whether the children, parents, and adult volunteer would view the program as encouraging the processing of grief and person development. The following themes in perceived outcomes of the program were identified: confidence, trust, and communication skills. The parents and guardians all described the therapeutic riding as a positive experience. They noted an increase in overall communication, including talk about the deceased, as well as an increase in the child's self-confidence and self-esteem. Success with the horses appeared to be important to these children, who expressed pride and joy in their accomplishments.

The impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication

Nickerson, A., Aderka, I.M., Bryant, R.A. & Hinton, D.E. (2013)

There has been much controversy regarding the psychological impact of the death of a parent, partly arising from neglect of potential moderating factors. The present study uses data from the National Comorbidity Survey Replication (NCS-R) to investigate the relative impacts of age at death of parent, adverse parenting practices, and time since loss on mental health outcomes in 2,823 bereaved adults. Logistic regression analyses controlling for sex and race revealed that younger age at the time of parental death was associated with poorer mental health outcomes. Further, adverse parenting practices during childhood were related to greater psychopathology in adulthood. Results also indicated that psychological distress following the death of a parent reduces over time. Notably, each of these factors significantly predicted psychopathology when controlling for all other variables. Findings are discussed in the context of current theories of attachment and psychopathology.

The incredible years: Parents, teachers, and children training series

Webster-Stratton C. (2001)

This artcle summarizes the Incredible Years Series. The training series consists of three empirically validated and integrated programs for parents, teachers and children that are designed to promote social competence and prevent, reduce and treat conduct problems in young children. The training methods, content and processes are explained.

The NAS EarlyBird Programme: partnerships with parents in early intervention

Shields, J (2001)

Early intervention bridges the gap between early diagnosis and appropriate educational placement. The National Autistic Society has developed an autism-specific three-month parent package, the NAS EarlyBird Programme, that emphasizes partnership with parents. Six families participate in each three-month programme, which combines weekly group training sessions for parents with individualized home visits. During the programme parents learn to understand autism, to build social communication, and to analyse and use structure, so as to prevent inappropriate behaviours. The use of video and the group dynamic amongst families are important components of the programme. An efficacy study evaluated the pilot programme and further monitoring is in progress. Training courses in the licensed use of the NAS EarlyBird Programme are now available for teams of professionals with prior experience of autism. Strengths and weaknesses of the programme are discussed. This short-term, affordable package, with supporting evidence of efficacy, offers a model of early intervention that is very popular with parents.

The psychological impact of the intifada on Palestinian children in the occupied West bank and Gaza: an exploratory study

Baker, A. M. (1990)

The mental health of 796 Palestinian children living in the occupied West Bank and Gaza Strip was assessed in terms of reported psychological status and behavioral symptoms. Results, interpreted within the context of the 1987 uprising (Intifada), indicate that exposure to political and military violence may be associated with the onset of conduct problems and fears, although active participation in the conflict may enhance self-esteem and shield children from development of psychological symptoms.

The Relationship Between Violence in the Family of Origin and Dating Violence Among College Students

Gover, A. R., Kaukinen, C., & Fox, K. A. (2008)

Prior research has established that violence in dating relationships is a serious social problem among adolescents and young adults. Exposure to violence during childhood has been linked to dating violence victimization and perpetration. Also known as the intergenerational transmission of violence, the link between violence during childhood and dating violence has traditionally focused on physical violence. This research examines the relationship between experiencing and perpetrating dating violence and exposure to violence in the family of origin. Specifically, the current research examines gender differences in the relationship between exposure to violence during childhood and physical and psychological abuse perpetration and victimization. Data were collected from a sample of approximately 2,500 college students at two southeastern universities. Findings indicate that childhood exposure to violence is a consistent predictor of involvement in relationships characterized by violence for males and females. The implications of the current research on policy are discussed.

The relative efficacy of two levels of a primary care intervention for family members affected by the addiction problem of a close relative: a randomized trial

Copello A, Templeton L, Orford J, Velleman R, Patel A, Moore L, et al. (2009)

OBJECTIVES:
A randomized trial to compare two levels of an intervention (full versus brief) for use by primary health-care professionals with family members affected by the problematic drug or alcohol use of a close relative.
DESIGN:
A prospective cluster randomized comparative trial of the two interventions.
SETTING:
A total of 136 primary care practices in two study areas within the West Midlands and the South West regions of England.
PARTICIPANTS:
A total of 143 family members affected by the alcohol or drug problem of a relative were recruited into the study by primary health-care professionals. All recruited family members were seen on at least one occasion by the professional delivering the intervention and 129 (90 %) were followed-up at 12 weeks.
MAIN OUTCOME MEASURES:
Two validated and standardized self-completion questionnaires measuring physical and psychological symptoms of stress (Symptom Rating Test) and behavioural coping (Coping Questionnaire) experienced by the family members. It was predicted that the full intervention would show increased reduction in both symptoms and coping when compared to the brief intervention.
RESULTS:
The primary analysis adjusted for clustering, baseline symptoms and stratifying variables (location and professional group) showed that there were no significant differences between the two trial arms. The symptom score at follow-up was 0.23 [95% confidence interval (CI): -3.65, +4.06] higher in the full intervention arm than in the brief intervention arm, and the coping score at follow-up was 0.12 (95% CI: -5.12, +5.36) higher in the full intervention arm than in the brief intervention arm.
CONCLUSIONS:
A well-constructed self-help manual delivered by a primary care professional may be as effective for family members as several face-to-face sessions with the professional.

The role of parent training in treatment of preschoolers with ADDH

Pisterman S., Firestone P., McGrath P., Goodman J., Webster I., Mallory R. & Goffin, B. (1992)

Abstract
The efficacy of group parent training was assessed in improving compliance and time on task in preschoolers with attention-deficit disorder with hyperactivity. Positive effects were obtained on measures of child compliance, but not on measures of attention. Parental compliance-management skills and overall style of interaction were also positively affected. The use of parent training for early intervention with ADDH children is discussed.

The sense of security in care--Relatives' Evaluation instrument: its development and presentation

Krevers B, Milberg A (2015)

CONTEXT: Relatives' sense of security in their family members' palliative home
care is important, and a valid and reliable instrument is needed to measure this.
OBJECTIVES: The aim of this article is to report the development, structure, and
psychometric properties of a new instrument, the Sense of Security in
Care--Relatives' Evaluation (SEC-R), in palliative home care.
METHODS: Instrument development was based on a previous study and review of the
literature; 213 relatives (55% women) of patients in palliative home care were
recruited (response rate 73%) and participated in a structured interview based on
a questionnaire. Principal component analysis (PCA) was used to identify
subscales. The construction was tested in correlation with other scales and
questions representing concepts expected to be related to sense of security in
care. RESULTS: The PCA resulted in three subscales, namely care interaction, mastery
and patient situation, which had an explained variance of 53%. Internal
consistency of the subscales ranged from 0.76 to 0.78. The final instrument
comprises 17 items. The scales were associated with the quality-of-care process
and the relatives' situation, perceived health, quality of life, stress, general
sense of security, and general sense of security in care.
CONCLUSION: The SEC-R provides a three-component assessment of palliative home
care settings using valid and reliable scales associated with other concepts. The
SEC-R is a manageable means of assessment that may contribute to quality-of-care
measures and to further research on relatives' sense of security in care.

The Timeline Followback Spousal Violence Interview to Assess Physical Aggression Between Intimate Partners: Reliability and Validity

Fals-Stewart W, Birchler GR, Kelley ML. (2003)

The psychometric properties of the Timeline Followback Spousal Violence interview (TLFB-SV), a calendar method used to assess daily patterns and frequency of spousal violence, were evaluated. Men (N = 104) entering a spousal violence treatment program, along with their female partners, were interviewed with the TLFB-SV at pretreatment, posttreatment, and quarterly thereafter for 1 year and asked to identify days of male-to-female and female-to-male physical aggression that had occurred between them. For posttreatment and follow-up interviews, participants maintained a weekly diary, in which they catalogued the days on which acts of spousal violence occurred. The subscale scores derived from the TLFB-SV, the proportion of days of any violence, and proportion of days of severe violence for each partner were calculated for each assessment interval. The TLFB-SV subscales had excellent temporal stability and concurrent and discriminant validity. Interpartner agreement on TLFB-SV subscale scores and agreement between partners on days when spousal violence occurred was low at pretreatment, but was high for the other assessment periods.

Theorethical perspectives on siblings relationships

Whiteman S, Michale S, Soli A. (2011)

Although siblings are a fixture of family life, research on sibling relationships lags behind that on other family relationships. To stimulate interest in sibling research and to serve as a guide for future investigations by family scholars, we review four theoretical psychologically oriented perspectives—(a) psychoanalytic-evolutionary, (b) social psychological, (c) social learning, and (d) family-ecological systems— that can inform research on sibling relationships, including perspectives on the nature and influences on developmental, individual, and group differences in sibling relationships. Given that most research on siblings has focused on childhood and adolescence, our review highlights these developmental periods, but we also incorporate the limited research on adult sibling relationships, including suggestions for future research on this fundamental family relationship.

Time, human agency, and social change: Perspectives on the life course

Elder, G.H. Jr. (1994)

The life course has emerged over the past 30 years as a major research paradigm. Distinctive themes include the relation between human lives and a changing society, the timing of lives, linked or interdependent lives, and human agency. Two lines of research converged in the formation of this paradigm during the 1960s; one was associated with an older "social relationship" tradition that featured intergenerational studies, and the other with more contemporary thinking about age. The emergence of a life course paradigm has been coupled with a notable decline in socialization as a research framework and with its incorporation by other theories. Also, the field has seen an expanding interest in how social change alters people's lives, an enduring perspective of sociological social psychology.

Training care givers of stroke patients: economic evaluation.

Patel A, Knapp M, Evans A, Perez I, Kalra L. (2004)

Background Training care givers reduces their burden and improves psychosocial outcomes in care givers and patients at one year. However, the cost effectiveness of this approach has not been investigated.

Objective To evaluate the cost effectiveness of caregiver training by examining health and social care costs, informal care costs, and quality adjusted life years in care givers.

Design A single, blind, randomised controlled trial.

Setting Stroke rehabilitation unit.

Subjects 300 stroke patients and their care givers.

Interventions Caregiver training in basic nursing and facilitation of personal care techniques compared with no caregiver training.

Main outcome measures Health and social care costs, informal care costs, and quality adjusted life years in care givers over one year after stroke.

Results Total health and social care costs over one year for patients whose care givers received training were significantly lower (mean difference -£4043 ($7249; €, 95% confidence interval -£6544 to -£1595). Inclusion of informal care costs, which were similar between the two groups, did not alter this conclusion. The cost difference was largely due to differences in length of hospital stay. The EQ-5D did not detect changes in quality adjusted life years in care givers.

Conclusion Compared with no training, caregiver training during rehabilitation of patients reduced costs of care while improving overall quality of life in care givers at one year.

Treatment-seeking young adults from families with alcohol problems. What have they been through? What state are they in?

Mackrill, T., Elklit, A. & Lindgaard, H. (2012)

Aims: This study surveys the childhood experiences of treatment-seeking young adult offspring of problem drinkers (AOPDs) and their psychological state at treatment baseline. Methods: Clients (N=502) entering a Danish nationwide treatment facility for young AOPDS completed the survey. Clients completed the Adult Children of Alcoholics Trauma Inventory, The Family Tree Questionnaire, the CORE–OM 34, Major Depression Inventory, and the Work and Social Adjustment Scale at treatment start. Results: A total of 48% of the clients' mothers and 75% of the clients' fathers were problem drinkers. Both parents were problem drinkers in 25% of cases, and 27% had at least one problem drinking stepparent. Mothers had on average drunk during 11.4 years of the clients' childhood (0–18 years). Fathers had on average drunk during 13.4 years; 46% knew or believed that at least one of their parents suffered from a psychiatric illness; 44% reported physical violence; 63% reported psychological abuse; and 38% had not spoken to anyone about their family's problem. A further 20% had only spoken to a parent or sibling. Conclusions/implications: The study highlights the high degree of variation in AOPD clients' childhood experiences and in their levels of distress, corresponding with studies of non clinical samples. The study offers a bleak image of the extent of parental drinking and of other negative factors in these clients' childhood homes, coupled with the finding that clients have often not spoken to others about their parents' drinking. Mentioning parental drinking to a counsellor is thus a potentially highly significant counselling event, demanding counsellor sensitivity and attention.

Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial.

Hansson H, Rundberg J, Zetterlind U, Johnsson KO, Berglund M. (2007)

BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.

Uppföljning av ändring i hälso- och sjukvårdslagen gällande fast vårdkontakt mm. Slutrapport

Socialstyrelsen (2012)

Lagändringen i hälso- och sjukvårdslagen om bland annat fast vårdkontakt är inte särskilt väl känd inom vården och bland patienter. Det visar uppföljningen som också pekar på att det finns ett stort behov av information och utbildning. Vårdgivarna behöver även införa rutiner för att tydliggöra hur fast vårdkontakt ska fungera i praktiken.

Socialstyrelsen fick i regleringsbrevet för 2011 i uppdrag av regeringen att följa upp lagändringarna från den 1 juli 2010 i hälso- och sjukvårdslagen (1982:763), HSL, om fast vårdkontakt, förnyad medicinsk bedömning och utökad information till patienten.

Uppföljningen ska särskilt uppmärksamma hur lagändringarna tillämpats, vilken effekt de har fått och hur väl patienter, personal och hälso- och sjukvårdsverksamheter känner till lagändringarna.

Drygt hälften av landstingen och hälso- och sjukvårdsverksamheterna uppger att de fick information om lagändringen före, eller direkt i samband med att den trädde i kraft den 1 juli 2010.

Uppföljningen visar att lagändringen i HSL om fast vårdkontakt, förnyad medicinsk bedömning och utökad information till patienten inte är särskilt väl känd bland hälso- och sjukvårdsverksamheterna, professionen eller patienterna.

Uppföljningen pekar också på att det finns ett stort behov av informations- och utbildningsinsatser om lagändringarna från vårdgivarnas sida. Det gäller samtliga de aktuella ändringarna i HSL, men framförallt rättigheten för patienten till en fast vårdkontakt.

Socialstyrelsens handbok Din skyldighet att informera och göra patienten delaktig kan fungera som underlag för vårdgivare och verksamhetschefer i ett arbete med sådana insatser. Socialstyrelsen planerar även att ta fram ett meddelandeblad med information om de aktuella lagändringarna, och framförallt om fast vårdkontakt.

Socialstyrelsen har vidare identifierat att det finns ett behov av att vårdgivare säkerställer att förnyad medicinsk bedömning fungerar som det är tänkt. I samband med detta kan vårdgivarna även behöva kontrollera att man använder det aktuella regelverket Socialstyrelsens bedömning är att det har gått för kort tid sedan lagändringarna för att vi ska kunna uttala oss om den långsiktiga effekten av lagändringarna. Representanterna för intresseorganisationerna, läkarna och sjuksköterskorna som deltog i uppföljningen om lagändringarna är dock hittills mycket positiva till förändringarna i sig.

Uppföljningen visar också följande:

Lagändringens genomslag i hälso- och sjukvårdens styrdokument är begränsat och det kan finnas ett behov av att ta fram rutiner och olika typer av styrdokument på alla nivåer i hälso- och sjukvården. Denna typ av rutiner och styrdokument kan behövas för att skapa kontinuitet och samordning i verksamheterna.
Det råder stor osäkerhet om lagändringen i hälso- och sjukvårdsverksamheterna, framförallt när det gäller hur bestämmelsen om fast vårdkontakt ska omsättas i praktiken och vilka befogenheter den fasta vårdkontakten ska ha. Det finns ett behov för vårdgivar-na att tydliggöra detta, särskilt när det gäller samverkan med andra verksamheter.
Majoriteten av vårdcentralerna och cirka hälften av sjukhusklinikerna har inte haft några patienter som tilldelats en fast vårdkontakt. I den kommunala hemsjukvården har ca en tredjedel av verk-samheterna haft en eller flera patienter som tilldelats en fast vårdkontakt.
Informationen om fast vårdkontakt och förnyad medicinsk bedömning behöver förbättras på landstingens webbplatser och på informationssidan 1177. Information om vårdgarantin och rätten att välja vårdgivare inom den offentligt finansierade hälso- och sjukvården finns på i stort sett alla webbplatser. Information om fast vårdkontakt finns bara på ett landstings webbplats och på en minoritet av landstingens informationswebbplats 1177. Information om förnyad medicinsk bedömning är lätt att hitta på 1177 men något svårare att hitta på landstingens webbplatser.
De flesta patientnämnder har haft ärenden med koppling till lagändringen. Ärenden gällande förnyad medicinsk bedömning är vanligast.
Drygt hälften av verksamhetscheferna vid sjukhuskliniker och vårdcentraler och fyra av tio verksamhetsansvariga vid hemsjukvården uppger att de har haft stöd av Socialstyrelsens handbok Din skyldighet att informera och göra patienten delaktig.

Use of eye‐pointing by children with cerebral palsy: what are we looking at?

Sargent, J., Clarke, M., Price, K., Griffiths, T., & Swettenham, J. (2013)

BACKGROUND:
Children with cerebral palsy often show significant communication impairment due to limited or absent speech. Further, motor impairment can restrict the use of movement, including pointing, to signal interest and intent. For some children, controlled gaze can be an effective 'point-substitute': such 'eye-pointing' can be used to request items, establish mutual interest in an event, or select vocabulary within an alternative or augmentative communication (ACC) system. However, in clinical practice there is a lack of clarity about how the term 'eye-pointing' is used, how 'eye-pointing' is recognized or how it relates to social development.
AIMS:
To present a clinical description of the term 'eye-pointing' with reference to children with severe cerebral palsy who cannot speak or finger-point. To consider this description within a wider discussion of the importance of gaze in communication development.
METHODS & PROCEDURES:
Cumulative clinical observations during assessment of children referred to a specialist multidisciplinary communication clinic have provoked discussion between the authors on what factors precipitate use of the term 'eye-pointing' in young children with severe cerebral palsy. In particular, discussion has centred on whether use of the term is appropriate in individual cases and whether guidance is available about how gaze should be observed in this developmentally vulnerable group of children. A literature search was also conducted in order to explore whether the use and meaning of the term is established.
CONCLUSIONS & IMPLICATIONS:
In interactions with non-speaking children, determining whether a child is using eye-gaze communicatively requires observation and interpretation of several factors. These processes will be informed by reflection on what is known about other aspects of the child's communication and interaction skills. Within the literature, the term 'eye-pointing' is sometimes used when describing the communication functions of individuals using augmentative and alternative communication (AAC) systems, and is occasionally qualified by a definition. No papers have been found that set out a clinical description universally applicable to children with severe motor impairment. Moreover, guidance is lacking on how possible episodes of 'eye-pointing' might be confidently distinguished from other episodes of directed gaze in young, developing communicators. The discussion of the term makes reference to the importance of gaze in early communication development, and explores factors that might influence gaze and its interpretation in young children with cerebral palsy. A description of eye-pointing for this group is offered. The authors suggest that this will bring practical benefits to those supporting the communication development of children with severe cerebral palsy.

Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports

Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T. (2006)

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports

Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T. (2006)

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

Utilization of medical healthcare among people receiving long-term care at home or in special accommodation

Condelius, A., Edberg, A.-K., & Rahm Hallberg, I. (2010)

AIM:
To investigate the utilization of medical healthcare, hospital care and outpatient care, during a 1-year period in relation to informal care, multimorbidity, functional status and health complaints and to long-term care at home or in special accommodation among people aged 65+, with one or more hospital admissions and receiving long-term care.
METHOD:
A total of 694 people receiving long-term care during the year 2001 were studied. Data were collected by means of the administrative registers Patient Administrative Support in Skåne and PrivaStat and through the study Good Ageing in Skåne. Those at home and those in special accommodation were compared regarding utilization of medical healthcare, informal care, multimorbidity, functional status and health complaints. Multiple logistic regression analysis was performed using at home vs. in special accommodation as the dependent variable and also two multiple linear regression analyses using the number of hospital stays and the number of contacts with the physician in outpatient care separately as dependent variables.
FINDINGS:
Those at home were significantly younger (mean age: 81 vs. 84 years) and less dependent in personal and instrumental activities of daily living (PADL/IADL) than those in special accommodation. A larger proportion of those at home was admitted to hospital three times or more (21 vs. 14%) and they had significantly more contacts with physicians in outpatient care (md: 10 vs. md: 7). Informal care was associated with care at home (OR = 0.074) and with utilization of outpatient care (B = 2.045). Dependency in PADL was associated with care in special accommodation (OR = 1.375) and with utilization of hospital care (B = -0.060) and outpatient care (B = -0.581).
CONCLUSION:
Medical healthcare seems more accessible to those who live at home are younger, less dependent and who have access to informal caregivers.

Validation of the CHORES: A measure of school-aged children´s participation in household tasks

Dunn L. (2004)

The CHORES (Children Helping Out: Responsibilities, Expectations, and Supports) is a clinical and research tool that measures school-aged children's participation in household tasks. Separate performance and assistance scores enable examination of changes in children's responsibilities for household tasks as they mature and the work of families to promote their participation. The Self-Care and Family-Care subscales afford study of cultural aspects of household tasks that may influence children's participation and opportunities for learning. Thirty-two parents from diverse backgrounds participated in the first part of the study. Twenty-one of these parents participated in the test–retest study. The sample was culturally diverse and included parents of 6- to 11-year-old children with and without disabilities who have average or above intellect. Results from the psychometric analyses show that the CHORES has strong reliability and validity. The variance in children's task performance and overall levels of assistance supports the utility of this measure for capturing differences among children in the extent of their participation. Stability of parents' responses over time is strong both for performance (ICC, r=0.88) and for assistance (ICC, r=0.92) scores. The validity of the CHORES is supported by the parents' judgments of the importance of involving their children in household tasks. The CHORES is easy to complete, considers the parent's perspective, and provides a way to collect information on children's participation in household tasks. The CHORES provides a mechanism to learn more about factors that influence children's participation in household tasks, changes in their responsibilities over time, and outcomes from their participation in these tasks.

Women in the Middle. Their Parent-care Years

Brody, E. (2004)

Women in the Middlewas so-named because daughters, who are the main caregivers to elderly disabled parents, most often in their middle years, are caught in the middle of multiple competing demands on their time and energy. Since the first edition, women's responsibilities and the pressures they have experienced have increased and intensified. Dr. Brody revisits this phenomenon in this new, updated edition of her ground-breaking work.

Women in the Middle, 2/e, describes and discusses the caregiving women's subjective feelings, experiences, and problems, and the effects on their mental and physical well-being, life styles, family relationships, and vocational activities. These case studies and narratives present an insider's view of the harsh and sometimes joyful experience of caregiving.

Special attention is given to the changing face of social, economic, and environmental conditions, as well as the diversity of the caregiver, in which caregiving, in which caregiving takes place.

Workforce capacity to respond to children whose parents have a mental illness

Maybery, D., & Reupert , A. (2006)

Abstract
OBJECTIVE:
The first of the three objectives of this study was to identify the core barriers that impede adult mental health and other clinicians from working with patients about parenting and child-related issues. The second and third objectives were to rate the importance of these barriers and to compare barriers for adult mental health workers with other workers.
METHOD:
There were two data collection phases; the first, qualitative phase involved collecting verbatim responses from 60 mental health and welfare workers, regarding barriers about working with mentally ill patients about their parenting role as well as with their children. The second involved 32 participants, including 20 adult mental health workers and 12 other workers, responding to the scaled questionnaire items based on the qualitative barriers identified at phase one.
RESULTS:
The most important barriers highlighted by workers were patients not identifying their illness as a problem for their children and patients denying that they had a mental health problem. All workers reported that it was part of their role to get involved with issues regarding their patient's children. In comparison to other workers, adult mental health workers reported time and resource limitations, as well as skill and knowledge deficits regarding parenting and working with children.
CONCLUSIONS:
The findings are discussed in relation to adult mental health policy and ongoing professional development, particularly for adult mental health workers.

Young carers and their Families

Becker, S., Aldridge, J., & Dearden, C. (1998)

TONY WATERSTON, Consultant Paediatrician (Community Child Health)
Young Carers and their Families. By Becker S, Aldridge J, Dearden C. (Pp 144; paperback £14.99.) Blackwell Science, 1998. ISBN 0 632 04966 9 .

A day in the life of a child caring for a parent with multiple sclerosis.

Children caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.

Written by a trio of sociologists the book comes from a community and family based perspective but there is much of value to paediatricians. The authors first describe three perspectives on child carers: the impact of disability on the family, which is mainly medical; the children's rights angle; and the view of the disability rights movement. The first is viewed rather negatively as being narrow, but to me portrays the emotional and educational impact on the child of being a carer: "Every child needs to grow up in a stable environment characterised by consistent relationships. Many children are instead subjected to unending crises stemming from a parent's illness and repeated hospitalisation which provoke chronic uncertainty and unresolved grief that can be more stressful to a child than the loss of a parent through divorce or death." Thus the role of carer can restrict the child's education, can create physical burdens that their bodies are unprepared for, and confront them with a picture of suffering that has long term harm.

The children as carers literature tells why children take on care giving roles: a major factor is lone parenthood, another is reluctance of their father to take on caring activity; sadly the failure of services to recognise the needs of children and indeed sometimes to withdraw their provision is a notable factor. Inevitably, poverty is an ever present contributor. We learn of the involvement of young carers in intimate tasks; one girl cared for her father from the age of 9 following a stroke: "I did stop showering him at about 14 or 15, but recently that's started again. I didn't like showering him any more. You know, I thought 'I want my privacy, I'm sure he wants his', and I'm sure he doesn't like me having to shower him and I certainly don't like doing it. I suppose it was embarrassment. You know—it takes up so much time, it takes about an hour from start to finish, you know, get him in the shower and get him out and dressed."

Children carers have little power or status and families assume that what has begun voluntarily will become embedded in their habits, even though the young person would rather relinquish the role.

School attendance and performance is poor among young care givers; one study found that one in four were missing school. It is a poor reflection on school health services that support has not been provided to help these children back into school.

I found that the authors take a long time to make a few simple points. Having learned that caring is common and not beneficial for children, I wanted to know what I should do but there are no clear messages. The UN Convention on the Rights of the Child should underpin policy, but its impact in the UK has been limited. Only 11 of 71 local authorities defined these children as in need under the Children's Act. The Carers Act 1996 ensures that children may request to have their needs assessed but in a typical British Catch 22, the Act does not oblige departments to provide any services.

A useful type of support are the Young Carers' Projects with now over 100 in the UK. These raise awareness, develop supportive services, act on behalf of young carers to ensure that they receive appropriate benefits, and arrange leisure activities.

The authors identify the need to inform young carers on medical conditions, pointing out that this is woefully inadequate and that many children know so little about their parents' medical condition that they had invented their own version of diagnosis, prognosis, and consequences.

It saddened me that in the section on the role of professionals in identifying and assisting young carers, there is no mention of paediatricians. Is this because they are seen as purely medical, or because they have little contact with young carers? I suspect that it is the former, and that we need to be more outspoken about our wish to work across disciplines on behalf of children's health. We also need to look out for child carers in the families whom we see.

What I searched for was a child or young person's perspective, to try and understand some of the positive aspects of caring. I found little, perhaps because little has been done. Usually children have pretty good answers to difficult questions. Searching hard, I found a reference to a national survey of young people in which they thought that children of 10 should make their own bed and help with the washing up, children of 14 could take a part time job, young people at 16 could baby sit a child of 5, and 18 year olds could marry and vote. Caring for a parent was not mentioned.

So what might paediatricians take away from this book? First, an understanding that children who are carers are around and are being harmed; second, that they are often invisible to the agencies who should be helping; and third, that we have a role in highlighting this type of exploitation, as well as looking out for young carers among our patients. We would do well to network with the agencies locally who have young carers' projects. Only when I was writing this did I discover who they are in my district.

"A look at a community coming together to meet the needs of older adults: An evaluation of Neighbors Helping Neighbors program."

Trickey, R (2008)

The purpose of this study was to evaluate the effectiveness of the Neighbors Helping Neighbors program. The study included surveys of 49 community-residing older adults and 26 community volunteers. Results showed that older adults perceived their quality of life to have improved after receiving social and environmental services; volunteers felt that their contributions to the program had made a significant difference in their community. This exploratory, descriptive study is only a beginning effort, but it holds great promise for suggesting ways to address the needs of the burgeoning aging population in our society.

 

"Being in good hands": next of kin's perceptions of continuity of care in patients with heart failure

Östman, Malin, Bäck-Pettersson, Siv, Sandvik, Ann-Helén, Sundler, Annelie Johansson (2019)

Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin ( n = 15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when they have access to care and treatment and when caregivers collaborate, regardless of healthcare is given by primary care, municipalities or specialist clinics. A sense of "being in good hands" sums up the need for continuous support, shared decision-making and seamless transitions between caregivers. It seems important that healthcare organisations safeguard effective and collaborative models. Moreover, professionals need to plan and perform healthcare in collaboration with patients and next of kin.

A dispositional and situational assessment of children’s coping: Testing alternative models of coping

Ayers, T.S., Sandler, I.N., West, S.G. & Roosa, M.W. (1996)

ABSTRACT Dispositional and situational measures of children's coping were developed using a theoretically based approach. Two studies (N1 = 217; N2 = 303) assessed the psychometric characteristics of these measures in fourth- through sixth-grade children. Confirmatory factor analyses indicated that a four-factor model of dispositional coping (active, distraction, avoidant, and support seeking) provided a better fit to the data than either the problemversus emotion-focused (Lazarus & Folkman, 1984) or passive versus active (Billings & Moos, 1981) coping models. The four-factor model was largely invariant with respect to age and gender. Moderate to high correlations were found between the parallel subscales of the dispositional and situational measures of coping. Although the four factor structures of the dispositional and situational measures were generally similar, factor loadings and correlations between dimensions were not equivalent.

A family perspective for substance abuse: implications from the literature

Gruber KJ, Taylor MF (2006)

This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.

A family perspective for substance abuse: implications from the literature.

Gruber KJ, Taylor MF. (2006)

This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.
Keywords: family | substance abuse | family functioning | parental alcohol use | parental drug
use | substance abuse research

A Feasibility Study of Enhanced Group Triple P — Positive Parenting Program for Parents of Children with Attention-deficit/Hyperactivity Disorder

Hoath, F. E., Hoath, F. E., Sanders, M. R., & Sanders, M. R. (2002)

The aim of this randomised controlled trial was to examine the efficacy of an Attention-deficit/ hyperactivity Disorder (ADHD)-specific, Enhanced (Level 5) Group Triple P intervention. Twenty families with a child with clinically diagnosed ADHD aged between 5 and 9 years participated. Families were randomly assigned to either an enhanced intervention group (Enhanced Group Triple P; EGTP) or a wait list (WL) condition. Using parent reports of child behaviour, parenting practices and family functioning in addition to teacher reports of child behaviour in the school environment, parents in the EGTP condition reported significant reductions in intensity of disruptive child behaviour problems, aversive parenting practices and increases in parental self-efficacy when compared to the WL condition. Parents' reports at 3-month follow-up indicated the gains in child behaviour and parenting practices achieved at post-intervention were maintained.

A functional analysis of resistance during parent training therapy

Patterson, G., & Chamberlain, P. (1994)

A decade of programmatic studies of resistance during parent training therapy is reviewed, including a brief description of a procedure developed for coding resistant behavior. Analyses of sequential interactions during treatment show that therapists' efforts to intervene produced immediate parental resistance. From baseline to midtreatment phases, there were increases in the therapists' efforts to intervene, which were in turn accompanied by Increases in parental resistance. Contextual variables such as parent pathology also correlated with higher levels of resistance. Decreases in resistance were associated with improvements in parental discipline practices. Parental resistance altered the behavior of the therapists, reducing their effectiveness. A regression analysis shows that improvements in discipline predicted fewer future arrests and out-of-home placement.

A future for family care and dementia intervention research? Challenges and strategies

Zarit SH, Femia EE. (2008)

Despite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatment trials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the research strategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approaches may have contributed to their limited findings of improvement. We identify some of the methodological issues that may have affected previous trials and suggest strategies for addressing these issues.

A graphic symbol tool for the evaluation of communication, satisfaction and priorities of individuals with intellectual disability who use a speech generating device

Valiquette, C., Sutton, A., & Ska, B. (2010)

This article reports on the views of individuals with learning disability (LD) on their use of their speech generating devices (SGDs), their satisfaction about their communication, and their priorities. The development of an interview tool made of graphic symbols and entitled Communication, Satisfaction and Priorities of SGD Users (CSPU) is described in detail. The tool was used to support comprehension and to elicit the opinions of eight individuals with LD who had severe communication disorders. Most participants reported that they did not use their SGDs in situations in which they needed them in order to communicate effectively. The participants' parents corroborated these statements but they identified priorities that were different from their child's. The results emphasize the necessity of permitting individuals with severe communication disorders to take part in decision-making by indicating their satisfaction and priorities for intervention. Methodological issues and future use of the evaluation tool in research and in clinical settings are discussed.

A Hermeneutic Phenomenological Analysis of Ageing with a Childhood Onset Disability

Harrison, T. C. & Stuifbergen, A. (2005)

In this qualitative study, we combined multiple interviews, field notes, life history review charts, and demographic questions to explore the life course experiences of 25 women, ages 55 to 65 years, who developed impairments due to paralytic polio during childhood. Based on a hermeneutic phenomenological methodology using thematic analysis, multiple themes emerged that traced their lives from childhood to later adulthood. The women described how they pushed their bodies and dismissed their physical decline as long as possible. The women's early experiences combined with the culturally defined role expectations for women to influence their perceptions of how to react to changing physical abilities with age.

A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives

Kuh, D., & Ben-Shlomo, Y. (2002)

Over the last few years there has been increasing interest in conceptualizing disease aetiology within a life course framework.1,,2 This approach is not new to Public Health or unique to epidemiology (see below). However, its current resonance and interest within epidemiology reflects the challenging theoretical framework this approach provides. This issue of the International Journal of Epidemiology has several papers with a 'life course theme'. This accompanying editorial is intended to highlight what we believe are the key conceptual issues around life course epidemiology. We have chosen to use examples from chronic disease epidemiology, but this approach is also applicable within the context of infectious diseases3 and wider notions of health and wellbeing.4

We have defined a life course approach to chronic disease epidemiology1 as the study of long-term effects on chronic disease risk of physical and social exposures during gestation, childhood, adolescence, young adulthood and later adult life. It includes studies of the biological, behavioural and psychosocial pathways that operate across an individual's life course, as well as across generations, to influence the development of chronic diseases.

A locus of control scale for children

Nowicki S, Strickland BR. (1973)

A study to produce a reliable, methodological precise
measure of generalized locus of control of reinforcement, which can
be group administered to a wide range of children, is reported. The
measure produced, the Nowicki-Strickland Locus of Control Scale, is a
paper and pencil instrument of 40 questions which are marked either
yes or no. The scale was administered to 1017 mostly Caucasian
elementary and high school students, grades 3 through 12, with all
socioeconomic levels except the very highest represented. All mean
intelligence scores were in the average range. Results of the test
administration include: (1) the student's responses became more
internal with age, and substantial individual dif ferences occurred at
the third-grade level; (2) all item-total relationships were moderate
but consistent for all ages; (3) locus of control scores were not
significantly related to social desirability; (4) it was tentaively
concluded that internality is related significantly to higher
occupational level, especially for males; and (5) there was a clear
relationship between locus of control and achievement scores; all
correlations were negative, with most of the significant correlations
present in the male group. Two revised scales of 20 items and 21
items for primary and secondary groups, respectively, were
constructed; the scale was also adopted for use with college and
adult subjects. Eight tables present the study data, and samples of
the 20 and 21 item scales are given. (DB)

A Long-Term Follow-up Study of a Randomized Controlled Trial of Mother-Infant Psychoanalytic Treatment: Outcomes on Mothers and Interactions

SALOMONSSON, M. W., SORJONEN, K. & SALOMONSSON, B. (2015)

An earlier randomized controlled trial (RCT) compared 80 mother-infant dyads in a Stockholm sample. One had received mother-infant psychoanalytic treatment [mother-infant psychoanalytic therapies (MIP) group], and the other received Child Health Center care (CHCC group). Effects were found on mother-reported depression and expert-rated mother-infant relationship qualities and maternal sensitivity. When the children were 412 years, the dyads were followed up with assessments of the children's attachment representations, social and emotional development, and global functioning, and the mothers' psychological well-being and representations of the child as well as the mother-child interactions. We gathered data from 66 cases approximately 312 years' posttreatment. All scores involving the mothers had now approached community levels. We found effects on maternal depression in favor of MIP, but no other between-group differences. The MIP treatments seemed to have helped the mothers to recover more quickly on personal well-being, to become more sensitive to their babies' suffering, and to better support and appreciate their children throughout infancy and toddlerhood. If so, this would explain why the MIP children had a better global functioning and were more often "OK" and less often "Troubled" at 412 years.

A metaanalysis of behavioral treatments for attention-deficit/hyperactivity disorder

Fabiano, G. A., Pelham, W. E., Coles, E. K., Gnagy, E. M., Chronis-Tuscano, A., & O’Connor, B. C. (2009)

There is currently controversy regarding the need for and the effectiveness of behavior modification for children with attention-deficit hyperactivity disorder (ADHD) despite years of study and multiple investigations reporting beneficial effects of the intervention. A meta-analysis was conducted by identifying relevant behavioral treatment studies in the literature. One-hundred seventy-four studies of behavioral treatment were identified from 114 individual papers that were appropriate for the meta-analysis. Effect sizes varied by study design but not generally by other study characteristics, such as the demographic variables of the participants in the studies. Overall unweighted effect sizes in between group studies (.83), pre-post studies (.70), within group studies (2.64), and single subject studies (3.78) indicated that behavioral treatments are highly effective. Based on these results, there is strong and consistent evidence that behavioral treatments are effective for treating ADHD.

A meta-analysis of interventions for bereaved children and adolescents

Rosner, R., Kruse, J., & Hagl, M. (2010)

The main objective of this review was to provide a quantitative and methodologically sound evaluation of existing treatments for bereavement and grief reactions in children and adolescents. Two meta-analyses were conducted: 1 on controlled studies and 1 on uncontrolled studies. The 2 meta-analyses were based on a total of 27 treatment studies published before June 2006. Hedges's g and Cohen's d were used as measures of effect size and a random-effects model was applied. Results yielded small to moderate effect sizes. Interventions for symptomatic or impaired participants tended to show larger effect sizes than interventions for bereaved children and adolescents without symptoms. Promising treatment models were music therapy and trauma/grief-focused school based brief psychotherapy.

A meta-analytic review of components associated with parent training program effectiveness

Kaminski, J. W., Valle, L. A., Filene, J. H., & Boyle, C. L. (2008)

This component analysis used meta-analytic techniques to synthesize the results of 77 published evaluations of parent training programs (i.e., programs that included the active acquisition of parenting skills) to enhance behavior and adjustment in children aged 0-7. Characteristics of program content and delivery method were used to predict effect sizes on measures of parenting behaviors and children's externalizing behavior. After controlling for differences attributable to research design, program components consistently associated with larger effects included increasing positive parent-child interactions and emotional communication skills, teaching parents to use time out and the importance of parenting consistency, and requiring parents to practice new skills with their children during parent training sessions. Program components consistently associated with smaller effects included teaching parents problem solving; teaching parents to promote children's cognitive, academic, or social skills; and providing other, additional services. The results have implications for selection and strengthening of existing parent training programs.

A mismatch of paradigms disrupts the introduction of psycho-educative interventions for families of persons with smi: An interview study with staff from community services

Persson, Karin; Östman, Margareta; Ingvarsdotter, Karin; Hjärthag, Fredrik (2018)

Abstract:
Treatment and support of people diagnosed with severe mental illness in Sweden takes place in out-patient psychiatric services or municipality services. Most of the responsibility for support in daily life are provided by the close family. One crucial matter is how to support these families. This research project aimed to investigate the Swedish construction with shared responsibility between county psychiatric care and municipality social care for consumers with severe mental illness affects actions in municipalities in relation to family support. Ten representatives from five municipality settings were interviewed. Five semi-structured interviews were analysed using a thematic analysis. The following themes emerged; One overarching theme, "a mismatch of paradigms", and sub-themes: (a) "accentuating differences", (b) "doubts about including the entire family in the same session" and (c) "lack of a uniform family support policy". We conclude that a shared mandate needs a dialogue between psychiatric and municipality services concerning this mismatch.

A model Community Education Program on Depression and Suicide in Later Life.

Pratt, C. C., Schmall, V. L., Wilson, W., & Benthin, A. (1991)

This paper describes the development and evaluation of a 3-hour multimedia community education program on depression and suicide in later life. Designed for families, older adults, and service providers, the program provides information and teaches skills needed to recognize and respond to depression and suicidal behavior in the elderly. Compared with a control group, program participants had significant gains in knowledge and in their intent to take appropriate action in support of a depressed person.

A Model for Parental ADHD: Help-Seeking and Readiness to Change

Waite, R., & Ramsay, J. R. (2010)

Attention deficit/hyperactivity disorder (ADHD) is a lifespan developmental syndrome that is associated with significant impairments. Although there is strong evidence that ADHD persists into adulthood for a majority of individuals, adults with ADHD are identified and treated at much lower rates than are children with ADHD. Considering the heritability of ADHD, there is an increased likelihood that at least one parent of a child with ADHD will also have ADHD, or exhibit prominent features of the disorder. Parental ADHD also affects help-seeking behavior regarding treatment, as well as follow through on treatment recommendations. There is a paucity of data on parental ADHD and help-seeking among underserved populations. The goal of this paper is to review parental ADHD among underserved groups in terms of factors affecting help-seeking behavior and readiness to engage in care. A model for conceptualizing and addressing issues of readiness for change for parents with ADHD is also proposed.

A model of consequences of dementia caregivers' stress process: influence on behavioral symptoms of dementia and caregivers' behavior-related reactions

Campbell, J. (2009)

Abstract
The purpose of this article is to extend the Schultz and Martire Caregiver Stress-Health Model by explaining consequences of the stress process beyond those related to health in dementia caregivers, including consequences for caregivers and the dyadic unit, and to highlight the dynamic that exists between caregivers' stress, behavioral symptoms of dementia, and behavior-related reactions of caregivers. The relevant literature is reviewed, establishing the pervasive effects of caregivers' stress within a care dyad. Primary informal caregivers play a predominant role in managing environmental stimuli and providing for needs, in particular adjusting their own approaches and demeanor to enhance the care environment. Thus, behavioral symptoms of dementia and the behavior-related reactions of caregivers are conceptualized as a dyadic consequence of the caregivers' stress process. This model presents an extended view of the consequences of caregivers' stress and provides a more holistic, dyadic approach to the issues these vulnerable dyads face. Behavioral symptoms of dementia and behavior-related reactions are seen as amenable to caregiver- or dyad-directed interventions that target stress reduction. This conceptualization may provide support for research, clinical, or policy initiatives that include caregiver-directed or dyadic interventions for these important behavior-related outcomes

A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.

Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF. (2013)

Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.

A qualitative study of older informal carers´ experiences and perceptions of their caring role

Nan Greenwood, Carole Pound, Sally Brearley, Raymond Smith (2019)

Abstract
Background and aims
Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers' experiences and their perceptions of their role.

Methods
Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically.

Findings
Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death.

Conclusions
Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.

A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service

Lilley SA, Lincoln NB, Francis VM. (2003)

Objective: To investigate stroke patients' and carers' perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.
Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.
Setting: Community stroke services in North Nottinghamshire, UK.
Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.
Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.

A randomized controlled trial evaluating the effect of a support and education programme for spouses of people affected by stroke.

Franzen-Dahlin A, Larson J, Murray V, Wredling R, Billing E. (2008)

OBJECTIVE:
To determine whether a nurse-led support and education programme for spouses of patients affected by stroke improved the psychological health of the spouses.
DESIGN:
A longitudinal, open, randomized controlled trial.
SAMPLE:
One hundred spouses of stroke patients were randomly assigned to either an intervention or a control group.
SETTING:
The study was conducted in a hospital setting.
INTERVENTION:
The intervention consisted of six group meetings during six months, with a follow-up after further six months. Comparison between the intervention and the control groups was made at baseline, after six and 12 months using analysis with repeated measures.
MAIN MEASURES:
The Comprehensive Psychopathological Rating Scale--Self-Affective for psychological health.
RESULTS:
No significant difference was found between the intervention and control groups concerning overall psychological health. However, a subanalysis revealed that those who participated more frequently in the group meetings (five or six times) had significantly stronger psychological health (P<0.05). Knowledge about stroke increased over time in both groups, but participants in the intervention group learned more (P=0.041).
CONCLUSION:
Encouraging participation in the group meetings of a support programme might have a positive effect on psychological health.

A randomized controlled trial evaluating the effect of a support end education programme for spouses of people affected by stroke

Franzén-Dahlin, Å., Larson, J., Murray, V., Wredling, R., & Billing, E. (2008)

Objective: To determine whether a nurse-led support and education programme for
spouses of patients affected by stroke improved the psychological health of the
spouses.
Design: A longitudinal, open, randomized controlled trial.
Sample: One hundred spouses of stroke patients were randomly assigned to either
an intervention or a control group.
Setting: The study was conducted in a hospital setting.
Intervention: The intervention consisted of six group meetings during six months,
with a follow-up after further six months. Comparison between the intervention and
the control groups was made at baseline, after six and 12 months using analysis with
repeated measures.
Main measures: The Comprehensive Psychopathological Rating Scale –
Self-Affective for psychological health.
Results: No significant difference was found between the intervention and control
groups concerning overall psychological health. However, a subanalysis revealed that
those who participated more frequently in the group meetings (five or six times) had
significantly stronger psychological health (P50.05). Knowledge about stroke
increased over time in both groups, but participants in the intervention group learned
more (P ¼ 0.041).
Conclusion: Encouraging participation in the group meetings of a support
programme might have a positive effect on psychological health.

A randomized controlled trial of CBT therapy for adults with ADHD with and without medication

Weiss, M., Murray, C., Wasdell, M., Greenfield, B., Giles, L., & Hechtman, L. (2012)

Background
Previous studies of psychological treatment in adults with ADHD have not controlled for medication status and include either medicated participants or mixed samples of medicated and unmedicated participants. The objective of this study is to examine whether use of medication improves outcome of therapy.

Method
This was a secondary analysis comparing 23 participants randomized to CBT and Dextroamphetamine vs. 25 participants randomized to CBT and placebo. Both patients and investigators were blind to treatment assignment. Two co-primary outcomes were used: ADHD symptoms on the ADHD-RS-Inv completed by the investigator and improvement in functioning as reported by the patient on the Sheehan Disability Scale.

Results
Both groups showed robust improvement in both symptoms and functioning, but the use of medication did not significantly improve outcome over and above use of CBT and placebo.

Conclusion
This study replicates previous work demonstrating that CBT is an effective treatment for ADHD in adults. Within the limits of this pilot, secondary analysis we were not able to demonstrate that medication significantly augments the outcome of CBT therapy for adults with ADHD. The study was funded by GlaxoSmithKline, Clinical Trials Registry #GSK707.

A Randomized Controlled Trial of Mother- Infant Psychoanalytic Treatment: I. Outcomes on Self-Report Questionnaires and External Ratings

SALOMONSSON, B. & SANDELL, R. (2011)

Mother-infant relationship disturbances occur in three domains: maternal distress, infant functional problems, and relationship difficulties. They constitute common clinical problems. In Sweden, they are usually handled by nurses as part of public Child Health Centre care. Severe cases are referred to child psychiatry services. This randomized controlled trial compared two groups of mother-infant dyads in a Stockholm sample. One received only Child Health Centre care (the "CHCC" group) while the other received mother-infant psychoanalytic treatment plus CHCC (the "MIP" group). Eighty dyads of mothers and infants under 1½ years of age where the mothers had serious concerns about themselves in their role as mothers, their infants' well-being, or the mother-baby relationship were randomly selected for either the MIP or the CHCC group. The primary outcomes were mother-reported depression, mother-reported infant functional problems, and interviewer-based relationship assessments, all at 6 months after joining the project. Secondary outcomes were mother-reported stress and general psychic distress, externally rated video-recorded interactions, and the consumption of healthcare at the CHC, again all after 6 months. Intent-to-treat analyses of Treatment × Time effects significantly favored MIP treatment for maternal depression, mother-infant relationships, and maternal sensitivity. Effects were nearly significant on maternal stress, but nonsignificant on mother-reported infant functional problems, general psychic distress, maternal interactive structuring and nonintrusiveness, infant responsiveness and involvement, and healthcare consumption. MIP treatment improved mother-infant relationships and maternal sensitivity and depression, all of which are known to influence child development. If effects persist and are reproduced, MIP treatment holds promise for more widespread use.

A randomized controlled trial of motherinfant psychoanalytic treatment: II. Predictive and moderating influences of qualitative patient factors

SALOMONSSON, B. & SANDELL, R. (2011)

A randomized control trial was performed on 75 dyads in Stockholm, Sweden, with infants under 1½ years. It recruited mothers who worried about the babies, themselves as mothers, and/or the mother-baby relationship. Two groups of mother-infant dyads were compared. One received only Child Health Centre care (the "CHCC" group) while the other received mother-infant psychoanalytic treatment plus CHCC (the "MIP" group). Significant treatment effects were found on mother-reported depression, interviewer-rated dyadic relationship qualities and externally rated maternal sensitivity, and near-significant effects on mother-reported stress, all in favor of MIP. The objective of this study is to investigate the predictive and moderating influences on outcomes by qualitatively assessed maternal and infant characteristics. The qualitative factors covered maternal suitability for psychoanalysis, and "ideal types" of mother and child, respectively. Outcome measures from two interviews with a 6-month interval were depression (Edinburgh Postnatal Depression Scale (J. Cox, J. Holden, & R. Sagovsky, 1987), stress (Swedish Parental Stress Questionnaire (M. Östberg, B. Hagekull, & S. Wettergren, 1997), distress (Swedish Symptom Checklist-90 (SCL-90; L.R. Derogatis, 1994; M. Fridell, Z. Cesarec, M. Johansson, & S. Malling Thorsen, 2002) and infant social and emotional functioning (Ages and Stages Questionnaire: Social-Emotional (J. Squires, D. Bricker, K. Heo, & E. Twombly, 2002), relationship qualities (Parent-Infant Global Assessment Scale (PIR-GAS; ZERO TO THREE, 2005), and videotaped interactions (Emotional Availability Scales, Z. Biringen, J.L. Robinson, & R.N. Emde, 1998). Suitability for psychoanalysis predicted outcome only on the PIR-GAS. Two overarching maternal ideal types were created, reflecting their attitude to the psychoanalytic process: "Participators" and "Abandoned." The Participators benefited more from MIP than they did from CHCC on maternal interactive sensitivity. A contrasting, but nonsignificant, pattern was found among the Abandoned mothers. Two ideal types of babies emerged: those "Affected" and "Unaffected" by the disturbance, respectively. Among Affected babies, dyadic relationships and sensitivity among their mothers improved significantly more from MIP than they did from CHCC. The superior effects of MIP applied especially to Participator mothers and Affected infants. For Abandoned mothers and Unaffected infants, CHCC seemed to be of equal value.

A randomized pilot study of the engaging moms program for family drug court

Dakof GA, Cohen JB, Henderson CE, Duarte E, Boustani M, Blackburn A, et al. (2010)

In response to the need for effective drug court interventions, the effectiveness of the Engaging Moms Program (EMP) versus Intensive Case Management Services (ICMS) on multiple outcomes for mothers enrolled in family drug court was investigated. In this intent-to-treat study, mothers (N = 62) were randomly assigned to either usual drug court care or the Engaging Moms drug court program. Mothers were assessed at intake and 3, 6, 12, and 18 months following intake. Results indicated that at 18 months post drug court enrollment, 77% of mothers assigned to EMP versus 55% of mothers assigned to ICMS had positive child welfare dispositions. There were statistically significant time effects for both intervention groups on multiple outcomes including substance use, mental health, parenting practices, and family functioning. EMP showed equal or better improvement than ICMS on all outcomes. The results suggest that EMP in family drug court is a viable and promising intervention approach to reduce maternal addiction and child maltreatment.

A randomized trial of family focused treatment for adolescents and young adults at risk for psychosis: study rationale, design and methods

Schlosser DA, Miklowitz DJ, O'Brien MP, De Silva SD, Zinberg JL, Cannon TD. (2012)

This article outlines the rationale for a family-focused psychoeducational intervention for individuals at risk for psychosis and explains the design of a randomized multisite trial to test its efficacy. Adolescents and young adults that meet criteria for a psychosis risk syndrome at eight participating North American Prodromal Longitudinal Study sites are randomly assigned to a 6-month, 18-session family-focused treatment for prodromal youth or a 3-session psychoeducational enhanced care control intervention and followed over 1 year. The results will determine whether the use of a family intervention is able to significantly improve functional outcomes, decrease the severity of positive symptoms and possibly prevent the onset of full psychosis, compared with enhanced care alone. Levels of familial criticism at baseline are hypothesized to moderate responses to family intervention. Improvements in knowledge about symptoms, family communication and problem solving will be tested as mediators in the pathways between treatment assignment and clinical or psychosocial outcomes in high-risk youth. The ongoing trial evaluates whether a non-invasive psychosocial approach can significantly enhance functional outcomes and prevent the ultra high risk patients from developing psychosis. The results will provide an important stepping stone in the movement of the field from refining early detection strategies to developing efficacious preventative treatments.

A randomized trial to evaluate an education programme for patients and carers after stroke

Smith J, Forster A, Young J. (2004)

Objectives: To evaluate the effectiveness of an education programme for patients and carers recovering from stroke.
Design: Randomized controlled trial.
Subjects and setting: One hundred and seventy patients admitted to a stroke rehabilitation unit and 97 carers of these patients.
Interventions: The intervention group received a specifically designed stroke information manual and were invited to attend education meetings every two weeks with members of their multidisciplinary team. The control group received usual practice.
Measures: Primary outcome was knowledge of stroke and stroke services. Secondary outcomes were handicap (London Handicap Scale), physical function (Barthel Index), social function (Frenchay Activities Index), mood (Hospital Anxiety and Depression Scale) and satisfaction (Pound Scale). Carer mood was measured by the General Health Questionnaire-28.
Results: There was no statistical evidence for a treatment effect on knowledge but there were trends that favoured the intervention. The education programme was associated with a significantly greater reduction in patient anxiety score at both three months (p=0.034) and six months (p=0.021) and consequently fewer 'cases' (Hospital Anxiety and Depression Scale anxiety subscale score ≥ 11). There were no other significant statistical differences between the patient or carer groups for other outcomes, although there were trends in favour of the education programme.
Conclusion: An education programme delivered within a stroke unit did not result in improved knowledge about stroke and stroke services but there was a significant reduction in patient anxiety at six months post stroke onset.

A responsibility that never rests – the life situation of a family caregiver to an older person

Jarling Aleksandra, Rydström Ingela, Ernsth-Bravell Marie, Nyström Maria, Dalheim-Englund Ann-Charlotte (2019)

Abstract [en]
Background
When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well-being and daily life.

Aim
This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home.

Methods

In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process.

Findings
In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships.

Conclusion
A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

A review of policies on alcohol use during pregnancy in Australia and other English-speaking countries, 2006

O’Leary, CM:, Heuzenroeder, L., Elliott, E.J. & Bower, C. (2007)

It is well accepted that heavy alcohol consumption during pregnancy is a risk factor for fetal alcohol spectrum disorder, but research findings for exposure to low to moderate alcohol levels during pregnancy are equivocal, allowing a range of interpretations. The 2001 guideline from the National Health and Medical Research Council (NHMRC) for low-risk drinking for "women who are pregnant or might soon become pregnant" recommends fewer than seven standard drinks per week, and no more than two standard drinks on any one day. This position has polarised health professional and consumer opinion in Australia. The NHMRC guidelines on alcohol are scheduled for review in 2007. We surveyed the alcohol and pregnancy policies and clinical practice guidelines of Australia and six other English-speaking countries to identify current policy. Documents were obtained through Internet searches and direct contact with the relevant organisations. The policies and guidelines varied both across and within countries, and the NHMRC guideline, while not universally supported in Australia, is in step with the policies of the United Kingdom and Canada. Research is needed to elucidate the true association between low to moderate alcohol consumption and fetal harm, the impact of different policies on rates of maternal alcohol consumption during pregnancy, and any untoward outcomes of an abstinence message, to inform and underpin future policy development in Australia.

A cross general comparison of alcohol challenges at about age 20 in 40 father-offspring pairs

Schuckit, MA., Smith, TL., Kalmijn, J., & Danko, GP. (2005)

Abstract: Background: A low level of response (LR) to alcohol is one of several genetically-influenced phenotypes associated with an elevated risk for heavy drinking and alcoholism. While most studies support the influence of genes for this characteristic, no data to date have addressed how LR established from alcohol challenges performs in similarly aged subjects across generations

Methods: Between 1978 and 1988, 18-to-25-year-old non-alcohol-dependent Caucasian male drinkers participated in the San Diego Prospective Study alcohol challenges. The paradigms included self-reports of feelings of "High" and "Intoxication," as well as alcohol-related changes in body sway. In recent years, 40 18-to-29-year-old offspring of 25 of these original probands were tested using a similar protocol

Results: Despite the passage of two decades between laboratory sessions across generations, for family history positive (FHP) subjects, significant positive correlations were observed for subjective feelings of intoxication and body sway after alcohol. Parent-offspring correlations were in the predicted direction for subjective feelings for family history negatives (FHNs), but were not significant. Across offspring, LR values were lower for FHPs overall, with significant differences at 60 or 90 min for five items

Conclusions: The similarities in LR across generations, while not proving heritability, are consistent with prior reports regarding genetic influences in the LR to alcohol. The significant correlations across generations and over two decades support the reliability of the alcohol challenge results.

A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation

Perrin, P. B., Johnston, A., Vogel, B., Heesacker, M., Vega-Trujillo, M., Anderson, J.,Rittman, M. (2010)

Abstract

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention

A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation.

Perrin PB, Johnston A, Vogel B, Heesacker M, Vega-Trujillo M, Anderson J, et al (2010)

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.

A desire to be seen: family caregivers' experiences of their caring role in palliative home care

Linderholm, M., & Friedrichsen, M. (2010)

Abstract
Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

A multidisciplinary group programme in rural settings for community-dwelling chronic stroke survivors and their carers: a pilot randomized controlled trial.

Marsden D, Quinn R, Pond N, Golledge R, Neilson C, White J, et al. (2010)

OBJECTIVES:
To explore whether a group programme for community-dwelling chronic stroke survivors and their carers is feasible in rural settings; to measure the impact of the programme on health-related quality of life and functional performance; and to determine if any benefits gained are maintained.
DESIGN:
Randomized, assessor blind, cross-over, controlled trial.
SETTING:
Rural outpatient.
SUBJECTS:
Twenty-five community-dwelling, chronic stroke survivors and 17 carers of participant stroke survivors.
INTERVENTION:
The intervention group undertook a once-a-week, seven-week group programme combining physical activity, education, self-management principles and a 'healthy options' morning tea. At completion, the control group crossed over to receive the intervention.
MAIN MEASURES:
Stroke Impact Scale (stroke survivors), Health Impact Scale (carers), Six Minute Walk Test, Timed Up and Go, Caregiver Strain Index.
RESULTS:
There were insufficient participants for results to reach statistical significance. However between-group trends favoured the intervention group in the majority of outcome measures for stroke survivors and carers. The majority of measures remained above baseline at 12 weeks post programme for stroke survivor participants. The programme was well attended. Of the seven sessions all participants attended four or more and 88% attended six or seven sessions.
CONCLUSIONS:
This novel programme incorporating physical activity, education and social interaction proved feasible to undertake by a stroke-specific multidisciplinary team in three rural Australian settings. This programme may improve and maintain health-related quality of life and physical functioning for chronic stroke survivors and their carers and warrants further investigation.

A multilevel approach to family-centered prevention in schools: process and outcome

Dishion TJ, Kavanagh K. (2000)

The Adolescent Transitions Program (ATP) is a multilevel approach to family-based interventions within a middle-school setting. The intervention strategy is based on an ecological framework for studying social and emotional development in children and adolescents, emphasizing a network of contextual factors within which parenting is both directly and indirectly influential on the development of problem behavior. The ATP model includes a universal, selected, and indicated strategy for serving families with young adolescents. The model is designed to address the needs of families of young adolescents that present with a range of problem behavior and diverse developmental histories. The three interventions levels are described, and outcome data are presented, that support the effectiveness of the ATP model. This approach and the associated data are consistent with a broad literature supporting the effectiveness of family interventions, especially for high-risk youth. The effective implementation of family interventions within a school context suggests that these interventions can make a significant contribution to reducing problem behavior and substance use from a public health perspective.

A multilevel approach to family-centered prevention in schools: process and outcome

Dishion TJ, Kavanagh K. (2000)

The Adolescent Transitions Program (ATP) is a multilevel approach to family-based interventions within a middle-school setting. The intervention strategy is based on an ecological framework for studying social and emotional development in children and adolescents, emphasizing a network of contextual factors within which parenting is both directly and indirectly influential on the development of problem behavior. The ATP model includes a universal, selected, and indicated strategy for serving families with young adolescents. The model is designed to address the needs of families of young adolescents that present with a range of problem behavior and diverse developmental histories. The three interventions levels are described, and outcome data are presented, that support the effectiveness of the ATP model. This approach and the associated data are consistent with a broad literature supporting the effectiveness of family interventions, especially for high-risk youth. The effective implementation of family interventions within a school context suggests that these interventions can make a significant contribution to reducing problem behavior and substance use from a public health perspective.

A multiple-case study of a family-oriented intervention practice in the early rehabilitation phase of persons with aphasia

Blom Johansson M, Carlsson M, Östberg P, Sonnander K. (2013)

Background: Having a family member with aphasia severely affects the everyday life of the significant others, resulting in their need for support and information. Family-oriented intervention programmes typically consist of support, information, and skill training, such as communication partner training (CPT). However, because of time constraints and perceived lack of skills and routines, such programmes, especially CPT, are not common practice among speech-language pathologists (SLPs).

Aims: To design and evaluate an early family-oriented intervention of persons with stroke-induced moderate to severe aphasia and their significant others in dyads. The intervention was designed to be flexible to meet the needs of each participant, to emotionally support the significant others and supply them with information needed, to include CPT that is easy to learn and conduct for SLPs, and to be able to provide CPT when the persons with aphasia still have access to SLP services.

Methods & Procedures: An evaluative multiple-case study, involving three dyads, was conducted no more than 2 months after the onset of aphasia. The intervention consisted of six sessions: three sessions directed to the significant other (primarily support and information) and three to the dyad (primarily CPT). The intervention was evaluated both qualitatively and quantitatively based on video recordings of conversations and self-assessment questionnaires.

Outcomes & Results: The importance of emotional support as well as information about stroke/aphasia was clearly acknowledged, especially by the significant others. All significant others perceived increased knowledge and understanding of aphasia and related issues.

Communicative skills (as manifested in the video recordings) showed improvements from pre- to post-intervention.

Conclusions: The results corroborate the need for individualised and flexible family-oriented SLP services that are broad in content. Furthermore, the results support the early initiation of such services with recurrent contact. The usefulness of CPT this early in the rehabilitation process was indicated but is yet to be proved.

A new multidimensional measure of children’s perceptions of control

Connell, J.P. (1985)

Perceived control plays a central role in many motivational and cognitive accounts of behavior. In this study, a new 48-item self-report instrument, the Multidimensional Measure of Children's Perceptions of Control, is described. Perceptions of control are defined as children's understanding of the locus of the sufficient cause for success and failure outcomes. 3 dimensions of third- through ninth-grade children's perceptions of control are independently assessed: internal, powerful others, and unknown. Each of these sources of control is assessed within 3 behavioral domains: (a) cognitive, (b) social, and (c) physical. General items are also included. Perceptions of control over success outcomes and failure outcomes are assessed separately. The psychometric properties of the new measure's subscales are presented. Correlations of the new measure with measures of perceived and actual competence and findings demonstrating the sensitivity of the new measure to developmental, gender, and environmental influences are reported. It is argued that the new measure is an advance over existing measures of internal versus external locus of control in children because it provides domain-specific assessments of 3 separate dimensions of locus of control, including the previously untapped dimension of unknown control.

A new standing posture detector to enable people with multiple disabilities to control environmental stimulation by changing their standing posture through a commercial Wii Balance Board

Shih CH, Shih CT, Chiang MS. (2010)

This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture) and a Wii Balance Board with a newly developed standing posture detection program (i.e. a new software program turns a Wii Balance Board into a precise standing posture detector). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Both participants significantly increased their target response (body swing) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.

A pilot evaluation of the Family Caregiver Support Program.

Chen, Y.-M., Hedrick, S. C., & Young, H. M. (2010)

Abstract
The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative analyses were used to detect the differences between users and nonusers of caregiver support services. Six measures included were caregiving appraisal scale, caregiving burden, caregiving mastery, caregiving satisfaction, hour of care, and service satisfaction. Using consulting and education services is associated with lessening of subjective burden; using financial support services is associated with more beneficial caregiver appraisal, such as better caregiver mastery. The findings are practical and helpful for future caregiver service and program development and evaluation and policy making for supporting caregivers. In addition, the evaluation method demonstrated in the study provided a simple and moderately effective method for service agencies which would like to evaluate their family caregiver support services.

A pilot study of adjunctive family psychoeducation in adolescent major depression: Feasibility and treatment effect

Sanford, M., Boyle, M., McCleary, L., Miller, J., Steele, M., Duku, E., et al. (2006)

Objective: To obtain preliminary evidence of the feasibility and effectiveness of adjunctive family psychoeducation in adolescent major depressive disorder. Method: Participants were from outpatient clinics in Hamilton and London, Ontario. Over 24 months, 41 adolescents ages 13 through 18 years meeting major depressive disorder criteria were recruited (31 in Hamilton, 10 in London). Participants were randomized to usual treatment or usual treatment plus family psychoeducation. Outcome measures were readministered at 2 weeks, mid-treatment, posttreatment, and 3-month follow-up. Intent-to-treat analyses used χ2 and t tests and growth curve analysis. Standardized effects based on growth curve estimates were calculated for continuous outcomes. Results: The London site was withdrawn because of poor participant retention. In Hamilton, no participant missed more than one assessment and there was good family psychoeducation adherence. Compared to controls, participants in the experimental group showed greater improvement in social functioning and adolescent-parent relationships (with medium standardized effect size >0.5), and parents reported greater satisfaction with treatment. Conclusions: There were positive treatment effects on family and social functioning processes postulated to mediate the clinical course of major depressive disorder. The study provides support for further evaluation of family psychoeducation in this clinical population. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

A Preliminary Study of an Extension of a Community Dialectic Behaviour Therapy (DBT) Programme to Adolescents in the Looked After Care System

James AC, Winmill L, Anderson C, Alfoadari K. A (2011)

Background: Adolescents in the Looked After Care (LAC) system demonstrate high rates of psychiatric disorder and self‐harm; however, there is little evidence for therapies reducing self‐harm in this population. Method: An open evaluation of DBT for adolescents with repeated serious self‐harm in the LAC system was undertaken. Results: An intention‐to‐treat (ITT) analysis showed that DBT was successful at reducing the core elements of depression, hopelessness and self‐harm; however, 35% (7/20) failed to engage. Conclusion: DBT is a useful treatment option; the failure, however, of some adolescents to engage in therapy may be due to their higher initial rates of depression and hopelessness.

A Prospective Four-Year Followup Study of Children at Risk for ADHD: Psychiatric, Neuropsychological, and Psychosocial Outcome

Faraone, S. V, Biederman, J., Mennin, D., Gershon, J., & Tsuang, M. T. (1996)

BACKGROUND:
Attention-deficit hyperactivity disorder (ADHD) is a familial disorder that places the siblings of ADHD children at high risk for ADHD, conduct, mood, and anxiety disorders. Although the pattern of psychiatric risk has been well documented by prior family studies, neither the short- nor long-term outcome of these high-risk siblings has been prospectively examined.
OBJECTIVE:
To document the 4-year psychiatric, psychosocial, and neuropsychological outcome of the siblings of children with ADHD.
METHOD:
DSM-III-R structured diagnostic interviews and blind raters were used to conduct a 4-year follow-up of siblings from ADHD and control families. The siblings were also evaluated for cognitive, achievement, social, school, and family functioning.
RESULTS:
At follow-up, significant elevations of behavioral, mood, and anxiety disorders were found among the siblings of ADHD children. The high-risk siblings had high rates of school failure and showed evidence of neuropsychological and psychosocial dysfunction. These impairments aggregated among the siblings who had ADHD.
CONCLUSIONS:
The siblings of ADHD children are at high risk for clinically meaningful levels of psychopathology and functional impairment. In addition to supporting hypotheses about the familial transmission of ADHD, the results suggest that the high-risk siblings might be appropriate targets for primary preventive interventions.

A prospective longitudinal study of attachment disorganization/disorientation

CARLSON, E. A. (1998)

The research explores the antecedents and consequences of attachment disorganization from a prospective longitudinal perspective. The relations of attachment disorganization/disorientation to endogenous (e.g., maternal medical history, infant temperament) and environmental (e.g., maternal caregiving quality, infant history of abuse) antecedents and to behavioral consequences from 24 months to 19 years are examined. For the 157 participants in the longitudinal study, attachment disorganization was correlated significantly with environmental antecedents (e.g., maternal relationship and risk status, caregiving quality, and infant history of maltreatment), but not with available endogenous antecedents. Infant history of attachment disorganization was correlated with consequent variables related to mother-child relationship quality at 24 and 42 months, child behavior problems in preschool, elementary school and high school, and psychopathology and dissociation in adolescence. Structural models suggest that disorganization may mediate the relations between early experience and later psychopathology and dissociation. The findings are considered within a developmental view of psychopathology, that is, pathology defined in terms of process, as a pattern of adaptation constructed by individuals in their environments.

A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.

Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF. (2013)

Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.

A review of programs to alleviate the burden of informal caregivers of dependent persons.

Garces, J., Carretero, S., Rodenas, F., & Aleman, C. (2010)

The review of interventions currently available to alleviate the burden of informal caregivers of dependent persons has both social and political relevance considering the increasing number of elderly dependent persons. Respite services and programs for psycho-social intervention are the main methods of dealing with this burden. Study of the main research carried out to date on such interventions enables us to organize more efficient services, especially considering the enactment of the Law on Dependence in Spain in January 2007 and the need for other European and international governments to establish systems to meet the needs of the growing dependent population.

A Semiotic Perspective for AAC

Soto, G. och Olmstead, W. (1993)

This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).

A Semiotic Perspective for AAC

Soto, G. och Olmstead, W. (1993)

This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).

A separate structured conversation with relatives of patients enrolled for advanced palliative home care: a care development project

Carlsson ME (2014)

OBJECTIVE: One prerequisite for palliative home care is the relatives'
participation in the care. The relatives' situation in palliative home care is
unique, as they support the sick person and also have a great need for support
themselves. The aim of this care development project was to develop and implement
separate structured conversations (SSC) with relatives of patients of an advanced
palliative home care team (APHCT). METHOD: During the project, 61 conversations were held and 55 relatives answered
a questionnaire. The questionnaire, eight semistructured interviews with
relatives, and three focus-group discussions with nurses constitute the material
for the evaluation. RESULTS: Relatives have difficulties separating the SSC from the APHCT's care as
a whole. They underline that the SSC was a part of an ongoing process. They also
emphasize the value of having a conversation of their own in which the patient
was absent, and in which the focus was on the relative's situation. For some, the
conversation took place at the APHCT premises. The advantages of that were more
privacy and the opportunity to walk around the inpatient palliative care units.
The main problem during the project was conducting the SSC soon after the patient
was enrolled with the APHCT. SIGNIFICANCE OF RESULTS: Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their
willingness to provide care in the home, and mapping out their situation and
social network, is a way to support both the relatives and the patients. The
common structure of the conversations facilitated the assessment of the
relatives' situation but did not hinder individualization according to the
relatives' needs. The assumption is that all relatives should be offered a
conversation.

A separate structured conversation with relatives of patients enrolled for advanced palliative home care: a care development project

Carlsson ME (2014)

OBJECTIVE: One prerequisite for palliative home care is the relatives'
participation in the care. The relatives' situation in palliative home care is
unique, as they support the sick person and also have a great need for support
themselves. The aim of this care development project was to develop and implement
separate structured conversations (SSC) with relatives of patients of an advanced
palliative home care team (APHCT). METHOD: During the project, 61 conversations were held and 55 relatives answered
a questionnaire. The questionnaire, eight semistructured interviews with
relatives, and three focus-group discussions with nurses constitute the material
for the evaluation. RESULTS: Relatives have difficulties separating the SSC from the APHCT's care as
a whole. They underline that the SSC was a part of an ongoing process. They also
emphasize the value of having a conversation of their own in which the patient
was absent, and in which the focus was on the relative's situation. For some, the
conversation took place at the APHCT premises. The advantages of that were more
privacy and the opportunity to walk around the inpatient palliative care units.
The main problem during the project was conducting the SSC soon after the patient
was enrolled with the APHCT. SIGNIFICANCE OF RESULTS: Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their
willingness to provide care in the home, and mapping out their situation and
social network, is a way to support both the relatives and the patients. The
common structure of the conversations facilitated the assessment of the
relatives' situation but did not hinder individualization according to the
relatives' needs. The assumption is that all relatives should be offered a
conversation.

A small-scale randomized controlled trial of the revised new forest parenting programme for preschoolers with attention deficit hyperactivity disorder

Thompson, M. J. J., Laver-Bradbury, C., Ayres, M., Le Poidevin, E., Mead, S., Dodds, C., … Sonuga-Barke, E. J. S. (2009)

The revised new forest parenting programme (NFPP) is an 8-week psychological intervention designed to treat ADHD in preschool children by targeting, amongst other things, both underlying impairments in self-regulation and the quality of mother-child interactions. Forty-one children were randomized to either the revised NFPP or treatment as usual conditions. Outcomes were ADHD and ODD symptoms measured using questionnaires and direct observation, mothers' mental health and the quality of mother-child interactions. Effects of the revised NFPP on ADHD symptoms were large (effect size >1) and significant and effects persisted for 9 weeks post-intervention. Effects on ODD symptoms were less marked. There were no improvements in maternal mental health or parenting behavior during mother-child interaction although there was a drop in mothers' negative and an increase in their positive comments during a 5-min speech sample. The small-scale trial, although limited in power and generalizability, provides support for the efficacy of the revised NFPP. The findings need to be replicated in a larger more diverse sample.

A smartphone-based fall detection system

Abbate S, Avvenuti M, Bonatesta F, Cola G, Corsini P, Vecchio A. (2012)

Falls are a major cause of injuries and hospital admissions among elderly people. Thus, the caregiving process and the quality of life of older adults can be improved by adopting systems for the automatic detection of falls. This paper presents a smartphone-based fall detection system that monitors the movements of patients, recognizes a fall, and automatically sends a request for help to the caregivers. To reduce the problem of false alarms, the system includes novel techniques for the recognition of those activities of daily living that could be erroneously mis-detected as falls (such as sitting on a sofa or lying on a bed). To limit the intrusiveness of the system, a small external sensing unit can also be used for the acquisition of movement data.

A study of the family burden of 150 family members of schizophrenic patients

Lowyck B, De Hert M, Peeters E, Wampers M, Gilis P, Peuskens J. (2004)

Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB. The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatric. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

A support group programme for relatives during the late palliative phase

Henriksson, A. and B. Andershed (2007)

This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.

A systematic and methodological review of interventions for young people experiencing alcohol-related harm

Calabria B, Shakeshaft AP, Havard A. (2011)

Aims This review identified published studies evaluating interventions delivered outside educational settings, designed for young people with existing alcohol use problems, or who participate in behaviour that places them at high risk of alcohol-related harm, critiqued their methodology and identified opportunities for new interventions.

Methods A systematic search of the peer-reviewed literature interrogated 10 electronic databases using specific search strings, limited to 2005–09. No additional studies were found by a librarian searching other collections and clearing-houses, or by hand-searching review paper reference lists. The 1697 articles identified were reviewed against criteria from the Dictionary for the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies.

Results The methodological quality of existing studies is variable, and needs to be both more rigorous and more consistent. Particular problems include the lack of blinding outcome assessors, a reliance solely on self-report measures, highly variable consent and follow-up rates, infrequent use of intention-to-treat analyses and the absence of any economic or cost analyses. The range of interventions evaluated is currently limited to individually focused approaches, almost exclusively implemented in the United States.

Conclusions There is a great need for more intervention trials for young people at high risk of experiencing alcohol-related harm that are both methodologically rigorous and have a broader community focus, to complement the psychological interventions that currently dominate the relevant literature. Such trials would improve outcomes for high-risk young people themselves and would improve the evidence base, both in their own right and by facilitating future meta-analyses.

A systematic review of internet-based self-management interventions for youth with health conditions

Stinson, J., Wilson, R., Gill, N., Yamada, J., & Holt, J. (2009)

Abstract
OBJECTIVE:
Critically appraise research evidence on effectiveness of internet self-management interventions on health outcomes in youth with health conditions.
METHODS:
Published studies of internet interventions in youth with health conditions were evaluated. Electronic searches were conducted in EBM Reviews-Cochrane Central Register of Controlled Trials, Medline, EMBASE, CINAHL and PsychINFO. Two reviewers independently selected articles for review and assessed methodological quality. Of 29 published articles on internet interventions; only nine met the inclusion criteria and were included in analysis.
RESULTS:
While outcomes varied greatly between studies, symptoms improved in internet interventions compared to control conditions in seven of nine studies. There was conflicting evidence regarding disease-specific knowledge and quality of life, and evidence was limited regarding decreases in health care utilization.
CONCLUSIONS:
There are the beginnings of an evidence base that self-management interventions delivered via the internet improve selected outcomes in certain childhood illnesses.

A systematic review of parenting in relation to the development of comorbidities and functional impairments in children with Attention-Deficit/ Hyperactivity Disorder (ADHD).

Deault, L. C. (2010)

This review synthesizes recent research evidence regarding the parenting characteristics associated with families with children with Attention-Deficit/Hyperactivity Disorder (ADHD). ADHD is a complex, heterogeneous disorder with a range of genetic and environmental factors that contribute to its behavioral expression and different developmental trajectories. The current review adopts a developmental psychopathology perspective to conceptualize the risk and protective factors that might shape the developmental pathways of the disorder across different domains. Following from Johnston and Mash's review (Johnston and Mash, Clin Child Fam Psychol Rev 4:183-207, 2001), the present review systematically examines empirical studies from 2000-2008 that investigate parenting variables in relation to the development of children with ADHD, with a particular focus on the development of externalizing and internalizing comorbidities, as well as functional impairments in academic and social contexts. The most recent research evidence uses correlational designs to show that ADHD is associated with problematic family functioning, including greater stress within the family, higher rates of parental psychopathology and conflicted parent-child relationships, which appears to be exacerbated in children with comorbid oppositional and conduct problems. However, there is an absence of literature that considers the role that parents play in contributing to children's development in areas such as academic achievement and peer competence, as well as the development of internalizing difficulties. Future research should examine family factors that are associated with resilience in children with ADHD, using longitudinal designs that reflect the dynamic changes associated with a developmental psychopathology framework.

A therapeutic summer weekend camp for grieving children: supporting clinical practice through empirical evaluation

Farber, M.L.Z. & Sabatino, C.A. (2007)

Through collaborative action-oriented community research, agency-based clinicians, and university-based researchers engaged in a two-year theory-driven evaluation of a therapeutic summer camp for grieving children. The evaluation examined the camp practice model and children's engagement in therapeutic camp activities and psychosocial functioning based on the camp staff and parental caregivers' assessments. The first year findings led to a synergistic decision-making process that strengthened one of camp therapeutic activities. The overall results reveal a high consistency among staff on assessments of engagement and psychosocial functioning, and parental caregivers' satisfaction with the camp. Limitations of research evaluation and implications for practice are considered.

A typology of caregiving situations and service use in family carers of older people in six European countries: The EUROFAMCARE study

Di Rosa M, Kofahl C, McKee K, Bień B, Lamura G, Prouskas C, et al. (2011)

This paper presents the EUROFAMCARE study findings, examining a typology of care situations for family carers of older people, and the interplay of carers with social and health services. Despite the complexity of family caregiving situations across Europe, our analyses determined the existence of seven "caregiving situations," varying on a range of critical indicators. Our study also describes the availability and use of different support services for carers and care receivers, and carers' preferences for the characteristics of support services. Our findings have relevance for policy initiatives in Europe, where limited resources need to be more equitably distributed and services should be targeted to caregiving situations reflecting the greatest need, and organized to reflect the preferences of family carers.

A World of Their Own Making:Myth Ritual and the Quest for Family Values

Gillis, J. (1996)

Our whole society may be obsessed with "family values," but as John Gillis points out in this entertaining and eye-opening book, most of our images of "home sweet home" are of very recent vintage. A World of Their Own Making questions our idealized notion of "The Family," a mind-set in which myth and symbol still hold sway. As the families we live with become more fragile, the symbolic families we live by become more powerful. Yet it is only by accepting the notion that our ritual, myths, and images must be open to perpetual revision that we can satisfy our human needs and changing circumstances.

AAC and literacy

Hetzroni, O. E. (2004)

Purpose: To review current research on the use of augmentative and alternative communication (AAC) for prompting literacy in children with special educational needs. Method: Research studies relevant to emergent literacy and AAC use are reviewed. Studies focused on acquisition of literacy across various populations of children with special needs are reviewed. Results: Existing literature suggests that AAC may provide strategies and systems to compensate for impairments and disabilities of individuals with severe communication disorders. Conclusion: AAC may support literacy learning in children with special educational needs.

AAC and Scripting Activities to Facilitate Communication and Play

Taylor, R. and T. Iacono (2003)

Many children with developmental disability have limited skills in both play and communication. In this study, the effects of a naturalistic intervention approach to play and symbolic communication was investigated within a single-subject multiple baseline design. The intervention involved scripting play activities and modelling vocabulary in speech and the augmentative and alternative communication (AAC) modality of sign. An additional intervention phase was introduced, wherein the AAC intervention was expanded to include an electronic communication device. The results indicated that modelling and scripted play activities resulted in increases in symbolic play, while changes in types of functional play were evident, while its frequency was somewhat erratic across baseline and intervention phases. Improvements in communication were more evident when a multimodal AAC approach was used in modelling than when sign was used alone. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

ABC for Parents: Pilot Study of a Universal 4-Session Program Shows Increased Parenting Skills, Self-efficacy and Child Well-Being.

Enebrink, P., Danneman, M., Benvestito Mattsson, V., Ulfsdotter, M., Jalling, C., & Lindberg, L. (2014)

The aim of the present pilot study was to provide an initial evaluation of a brief, 4-session, universal health promoting parenting group program, the "ABC". We examined the effects of the program on improving parental strategies, parental self-efficacy, and child well-being. We also hypothesized that in a health promoting intervention implemented in the general population, increased parental self-efficacy and parental strategies would be associated with improvements in child well-being after 4 months. Parents living in 11 municipalities and local community agencies in Sweden enrolled in the project were invited to participate in the study. A repeated measurement within group design was used to assess the effects. In total, parents of 104 children aged 2–12 years participated in the ABC-study. Parental and child outcomes were evaluated before, after the intervention, and at a 4-month follow-up with parental self-report questionnaires. Paired t tests and ANOVA repeated measures showed statistically significant improvements of parental strategies (showing guidance, empathy/understanding, having rules/boundaries), parental self-efficacy (self-competence, knowledge/experience), and child well-being (emotional well-being, independence) from pre- to post measurement, with small to moderate effect sizes. Improvements were maintained at the 4-month follow-up, apart from changes in parental knowledge. University education and increased pre- to post improvements in self-efficacy predicted child emotional well-being at the 4-month follow-up. The findings suggest that the ABC-group intervention was effective in terms of improving child well-being, parental strategies and self-efficacy. This pilot study provides promising evidence for the ABC as a universal parenting program but further more rigorous evaluations are needed.

Acceptable and unacceptable risk: balancing every day risk by family members by older cognitively impaired adults who live alone

Cott S, Tierny M (2013)

Abstract
For individuals providing care for older people the issue of risk is a well-established concern, especially in the context of the older person's declining functional abilities and cognitive skills. Recently in expert discussions of health care, the issue of risk has been subsumed under the discourse of patient safety with the assumption that risk is intrinsic to certain situations and therefore can be measured by professionals and ultimately prevented. Less attention has been paid to the risk perceptions of older persons and their families and friends. We undertook the study on which this article is based in Toronto, Ontario, Canada between 2005 and 2007. We used grounded theory to identify the process whereby family and friends recognise and balance risk of older persons with cognitive impairment who live alone. Twenty pairs of older adults with cognitive impairment and their primary family members or friends were interviewed using in-depth, semi-structured interviews. The model of acceptable and unacceptable risk began with family members' perceptions that the older person was living with an acceptable level of risk, but then noticing red flags that eventually led to the perception of unacceptable risk. They employed risk-balancing strategies such as making changes in the physical environment, increasing surveillance, becoming more involved in the older person's care or redefining their definitions of acceptable risk in order to return the perceived risk to an acceptable level. Meanings of risk were constantly redefined as new situations arose and risk-balancing strategies were implemented. Throughout family members constantly balanced the risks of physical harm with the risks of undermining the older person's independence and self-esteem.

Access to AAC: Present, past, and future

Higginbotham, D. J., Shane, H., Russell, S., & Caves, K. (2007)

Historically, access in augmentative and alternative communication (AAC) has been conceptualized as the physical operation of AAC technologies; more recently, research and development in the cognitive and social sciences has helped to broaden the concept to include a range of human factors involved in the successful use of AAC technologies in social interactions. The goal of this article is to expand the current understanding of communication access by providing a conceptual framework for examining AAC access, evaluating recent scientific and technical advances in the areas of AAC, and discussing the challenges to accessing AAC technologies for a range of communication activities.

Access to AAC: Present, past, and future.

Higginbotham, D. J., Shane, H., Russell, S., & Caves, K. (2007)

Historically, access in augmentative and alternative communication (AAC) has been conceptualized as the physical operation of AAC technologies; more recently, research and development in the cognitive and social sciences has helped to broaden the concept to include a range of human factors involved in the successful use of AAC technologies in social interactions. The goal of this article is to expand the current understanding of communication access by providing a conceptual framework for examining AAC access, evaluating recent scientific and technical advances in the areas of AAC, and discussing the challenges to accessing AAC technologies for a range of communication activities.

Access to augmentative and alternative communication: New technologies and clinical decision-making

Fager, S., Bardach, L., Russell, S., & Higginbotham, J. (2012)

Children with severe physical impairments require a variety of access options to augmentative and alternative communication (AAC) and computer technology. Access technologies have continued to develop, allowing children with severe motor control impairments greater independence and access to communication. This article will highlight new advances in access technology, including eye and head tracking, scanning, and access to mainstream technology, as well as discuss future advances. Considerations for clinical decision-making and implementation of these technologies will be presented along with case illustrations.

According to need? : Predicting use of formal and informal care in a Swedish urban elderly population

Larsson, K. (2004)

Avhandling

This dissertation studies factors that predict use of public eldercare, informal care, and purchase of private services in relation to an individual's needs, social network characteristics, and sociodemographic factors. A further purpose is to examine whether use of public eldercare is correlated to receipt of informal care and purchase of private services in the Swedish welfare state.The dissertation is based on the Kungsholmen Study, a population-based longitudinal study. Studies I–III used cross-sectional data from community-dwelling people aged 81-100 and examined (I) gender, (II) marital and parental status, and (III) dementia and depressive symptoms as predictors of use of home help. Study IV analyzed factors related to moving into institutional care and receipt of home help from 1994/96 to 2000.The majority of support provided to elders living in the community comes from informal sources, even among people living alone. There was considerable overlap between home help and informal care. When all sources of care were considered, childless individuals had comparatively lower odds of receiving care. Factors predicting use of public eldercare and informal care differed depending on whether or not elders coresided. No gender differences in use of formal and informal care were found when controlling for household composition. Living alone, dementia, need of help with household chores, and walking limitations increased the likelihood of using public eldercare. Coresidence, informal care from outside the household, and use of private services decreased the likelihood. Depressive symptoms increased the likelihood of receiving home help and institutionalization when using longitudinal data, but not in the cross-sectional studies. Educational level was of importance and interacted with several factors; persons with higher levels of education were advantaged. Very few people moved into institutional care without previously having received home help services. Essentially the same factors that predicted receipt of home help services also predicted institutionalization.

Action and embodiment within situated human interaction

Goodwin, C. (2000)

A theory of action must come to terms with both the details of language use and the way in which the social, cultural, material and sequential structure of the environment where action occurs figure into its organization. In this paper it will be suggested that a primordial site for the analysis of human language, cognition, and action consists of a situation in which multiple participants are attempting to carry out courses of action in concert with each other through talk while attending to both the larger activities that their current actions are ambedded within, and relevant phenomena in their surround. Using as data video recordings of young girls playing hopscotch and archaeologists classifying color, it will be argued that human action is built throught the simultaneous deployment of a range of quite different kinds of semiotic resources. Talk itself contains multiple sign systems with alternative properties. Strips of talk gain their power as social action via their placement within larger sequential structures, encompassing activities, and participation frameworks constituted through displays of mutual orientation made by the actors' bodies. The body is used in a quite different way to perform gesture, again a class of phenomena that encompasses structurally different types of sign systems. Both talk and gesture can index, construe or treat as irrelevant, entities in the participants' surround. Moreover, material structure in the surround, such as graphic fields of various types, can provide semiotic structure without which the constitution of particular kinds of action being invoked through talk would be impossible. In brief it will be argued that the construction of action through talk within situated interaction is accomplished through the temporally unfolding juxtaposition of quite different kinds of semiotic resources, and that moreover through this process the human body is made publicly visible as the site for a range of structurally different kinds of displays implicated in the constitution of the actions of the moment.

Action and embodiment within situated human interaction

Goodwin, C. (2000)

A theory of action must come to terms with both the details of language use and the way in which the social, cultural, material and sequential structure of the environment where action occurs figure into its organization. In this paper it will be suggested that a primordial site for the analysis of human language, cognition, and action consists of a situation in which multiple participants are attempting to carry out courses of action in concert with each other through talk while attending to both the larger activities that their current actions are ambedded within, and relevant phenomena in their surround. Using as data video recordings of young girls playing hopscotch and archaeologists classifying color, it will be argued that human action is built throught the simultaneous deployment of a range of quite different kinds of semiotic resources. Talk itself contains multiple sign systems with alternative properties. Strips of talk gain their power as social action via their placement within larger sequential structures, encompassing activities, and participation frameworks constituted through displays of mutual orientation made by the actors' bodies. The body is used in a quite different way to perform gesture, again a class of phenomena that encompasses structurally different types of sign systems. Both talk and gesture can index, construe or treat as irrelevant, entities in the participants' surround. Moreover, material structure in the surround, such as graphic fields of various types, can provide semiotic structure without which the constitution of particular kinds of action being invoked through talk would be impossible. In brief it will be argued that the construction of action through talk within situated interaction is accomplished through the temporally unfolding juxtaposition of quite different kinds of semiotic resources, and that moreover through this process the human body is made publicly visible as the site for a range of structurally different kinds of displays implicated in the constitution of the actions of the moment.

Action theory, disability and ICF

Nordenfelt L. (2003)

Purpose: The purpose of this paper is to make a critical analysis of the conceptual platform of the recently introduced International Classification of Functioning, Disability and Health (ICF). Special attention is paid to the suggested definitions of the concepts of activity and participation. My argument intends to show that these definitions are not coherent. Methods: The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinction between capacity and opportunity and shows that both concepts are applicable to all actions. Capacity and opportunity are distinguished from the actual performance of actions. The latter presupposes the existence of a will. On this conceptual basis follows an analysis of the distinction between activity and participation as conceived by the WHO in ICF. Conclusions: The main conclusion of my reasoning is that the notions of activity and participation in ICF partly rest on confusion between capacity for action and the actual performance of an action. If my conclusion is sound this has far-reaching consequences for the application of the ICF in the practice of rehabilitation. My diagnosis therefore is that the conceptual framework of ICF is in great need of a strict action – theoretic reconstruction.

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams

Klarare A., Rasmussen BH., Fossum B., Hansson J., Fürst CJ., Lundh Hagelin C. (2018)

Abstract
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregiversexperienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Activity and participation in home rehabilitation: older people's and family members' perspectives

Randström KB, Kenneth A, Svedlund M, Paulson M. (2013)

Abstract
OBJECTIVE: To explore the experiences of older people and their supporting family members in relation to home rehabilitation, with a focus on activity and participation.
METHODS: Qualitative interviews were carried out with 6 older people and 6 family members at 1 and 6 months after the older person's discharge to their home. Qualitative content analysis of the data was carried out. The International Classification of Functioning, Disability and Health provides a guiding framework for rehabilitation.
RESULTS: Informants' experiences of home rehabilitation contributed to the formation of 6 categories: (i) living with a frail body; (ii) striving for well-being in daily life; (iii) being close at hand; (iv) feeling dependent in daily life; (v) struggling to carry on; and (vi) striving to be at home.
CONCLUSION: Older people's goals were to return to daily routines and to perform meaningful activities without feeling dependent on other people. Family members' participation was crucial. Psychosocial support and autonomy were essential for facilitating activity and participation. Healthcare professionals should consider each individual's unique experiences along with the significance of being at home

Activity participation of children with complex communication needs, physical disabilities and typically-developing peers

Raghavendra P, Virgo R, Olsson C, Connell T, Lane AE. (2011)

Objective: To describe and compare the context of participation of children with physical disabilities and complex communication needs (Group CCN) in out-of-school activities with children with physical disabilities only (Group PD) and typically-developing peers (Group TD).
Method: A cross-sectional, matched, multi-group design was used. Thirty-nine participants between 10–15 years of age were administered the Children's Assessment of Participation and Enjoyment.
Results: Kruskall-Wallis analyses revealed that there were significant differences among the three groups for overall location, enjoyment of the activities and with whom they did the social and self-improvement activities with. Mean trends showed that Group CCN participated in activities closer to home rather than in the community, were restricted in social participation and reported higher levels of enjoyment in activity participation than the other two groups.
Conclusions: Group CCN appeared to experience differences in participation when compared to peers with and without disability.

Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members

Möllerberg, Marie-Louise; Årestedt, Kristofer; Sandgren, Anna; Benzein, Eva; Swahnberg, Katarina (2020)

Objectives: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.Methods: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.Results: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61).Significance Of Results: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.

Adaptation and validation of the VOICES (SF) questionnaire – for evaluation of end‐of‐life care in Sweden.

O'Sullivan, Anna; Öhlen, Joakim; Alvariza, Anette; Håkanson, Cecilia (2018)

Abstract:
Objectives: Instruments for evaluating end‐of‐life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end‐of‐life care in Sweden. The VOICES (SF) [Views of Informal Carers – Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. Methods: This study was performed based on translation and back translation, cross‐cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life‐limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. Results: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. Significance of results: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross‐national comparisons between different healthcare places and organisations.

Adaptation of the preventive intervention program for depression for use with predominantly low-income Latino families

D’Angelo, E.J., Llerena-Ouinn, R., Shapiro, R., Colon, F., Rodriquez, P., Gallagher, K., & Beardslee, WR. (2009)

This paper describes the process for and safety/feasibility of adapting the Beardslee Preventive Intervention Program for Depression for use with predominantly low income, Latino families. Utilizing a Stage I model for protocol development, the adaptation involved literature review, focus groups, pilot testing of the adapted manual, and open trial of the adapted intervention with 9 families experiencing maternal depression. Adaptations included conducting the intervention in either Spanish or English, expanding the intervention to include the contextual experience of Latino families in the United States with special attention to cultural metaphors, and using a strength-based, family-centered approach. The families completed preintervention measures for maternal depression, child behavioral difficulties, global functioning, life stresses, and an interview that included questions about acculturative stressors, resiliency, and family awareness of parental depression. The postintervention interview focused on satisfaction, distress, benefits of the adapted intervention, and therapeutic alliance. The results revealed that the adaptation was nonstressful, perceived as helpful by family members, had effects that seem to be similar to the original intervention, and the preventionists could maintain fidelity to the revised manual. The therapeutic alliance with the preventionists was experienced as quite positive by the mothers. A case example illustrates how the intervention was adapted.

Adde Adhd : bästis med fienden

Eva Edberg (2017)

Hallå! Det är jag som är Adde. Jag är inlåst här i skåpet. Egentligen skulle jag ha spelat mitt livs viktigaste tennismatch nu. Kan du snälla släppa ut mig? Okej, jag ska vara ärlig. Jag har bara en vän och det är tennisbollen, alla andra verkar bli mina fiender. Men med hjälp av Adhd-killen inom mig kan jag bli din bästa vän. Absolut. När du öppnar får du se ...

Detta är en stormande feelgood-roman för unga. Med humor och allvar söker Adde sin nya identitet med en diagnos. En hink tennisbollar kastas upp, och ned ramlar ett bollhav av äventyr, med poliser, kraschad vänskap och en mystisk vaktmästare i kjol. Genom sporten får Adde vara med om ett spel där det viktigaste av allt är att vinna ? sig själv!

Addressing Substance Abuse Treatment Needs of Parents Involved with the Child Welfare System.

Oliveros A, Kaufman J. (2011)

The goal of this paper is to synthesize available data to help guide policy and programmatic initiatives for families with substance abuse problems that are involved with the child welfare system, and identify gaps in the research base needed to further refine practices in this area. To date, Family Treatment Drug Court and newly developed home-based substance abuse treatment interventions appear the most effective at improving substance abuse treatment initiation and completion in child welfare populations. Research is needed to compare the efficacy of these two approaches, and examine cost and child well-being indicators in addition to substance abuse treatment and child welfare outcomes.

Keywords: Substance Abuse, Child Welfare, Treatment

ADHD in Swedish 3- to 7-year-old children

Kadesjö C, Kadesjö B, Hägglöf B, Gillberg C. (2001)

Objective: To study characteristics of attention-deficit/hyperactivity disorder (ADHD) in a representative group of clinically impaired young children in Sweden with the disorder. Method: One hundred thirty-one children with ADHD (aged 3–7 years) were examined, and their parents were interviewed. Independent parent questionnaire data (Child Behavior Checklist, ADHD Rating Scale-IV, Conners) were collected. For comparison 131 children without ADHD were matched for age, gender, parents' marital status, child's adoption status, and social class. Results: Children with ADHD had extremely high ADHD symptom levels—on average four to eight times higher than the comparison group. Sociodemographic correlates of ADHD symptoms were more pronounced in parent questionnaire data than in parent interview data, underscoring the importance of diagnostic interview when dealing with clinical issues. Very few of the children with ADHD (6%) appeared "normal" with regard to attention/activity level at clinical examination.Conclusions: Clinic children with a diagnosis of DSMIV ADHD have typical and impairing symptoms already before starting school. The variance of ADHD in this age group appears to be accounted for by primary psychosocial factors only to a limited degree. It would seem reasonable to establish supportive and treatment measures for these young children so that the psychosocial and academic problems shown by so many individuals with ADHD later in their development might be reduced.

Adjö Herr Muffin

Ulf Nilsson, Anna-Clara Tidholm (2003)

Herr Muffin är ett marsvin som nu är gammal, trött och har ont i magen. Han tänker tillbaka på sitt liv och hur bra han har haft det. Han har haft fru och sex lurviga ungar, fått mycket gurka och hö. En dag ligger ett brev i hans postlåda och i brevet står det "Jag är ledsen för att pappa säger att när ett marsvin är gammal kan det plötsligt dö...." Boken om Herr Muffin berättar om ålderdom och död på ett fint och stillsamt sätt. En bilderbok som passar barn från 3 år.

Adolescence and borderline behavior—Between personality development and personality disorder

Streeck-Fischer, A. (2013)

Background: In recent years, an increasing interest in personality disorders in childhood and adolescence has been observed. This is partly due to recent findings of temperament, personality and neurobiological research. Method: This article reviews the history of the concept of borderline conditions in children and adolescents, and presents recent evidence from developmental psychology and neurobiology to support the diagnosis in adolescents as a disorder of development. An overview of treatment based on the decades-long experience with these patients at the Tiefenbrunn Clinic in Germany is described. Results: While the term personality disorder implies enduring traits, the evidence suggests that it is relatively unstable in adults as well as adolescents. Concerns about labeling adolescents with a presumably lifelong condition have hampered research on pathogenesis and treatment. Nevertheless, some adolescents with severe impairments in functioning do meet adult criteria for BPD, and do respond to the tailored treatment approaches that have been developed for them. Conclusions: The psychopathology of adolescents with BPD is probably a result of the interaction of the adolescent developmental process and defects in attachment and mentalization similar to those in adults with BPD. The term "developmental borderline personality disorder" is suggested to reflect the fluidity of this condition. Appropriate intervention requires a comprehensive multimodal approach in which individual therapy takes place within a protective framework of boundaries and limits.

Adolescent alcohol expectancies in relation to personal and parental drinking patterns

Brown SA, Creamer VA, Stetson BA. (1987)

Increased expectations of positive effects of alcohol have been associated with severity of drinking across a variety of abusing and nonabusing adult populations. Although alcohol expectancies have been examined among high school adolescents, no study has examined expectancies of identified adolescent abusers in treatment. This study investigated whether adolescent alcohol abusers in treatment expect significantly more reinforcement from alcohol than do nonabusing peers and whether expectancies vary as a function of exposure to parental alcohol abuse. The adolescent version of the Alcohol Expectancy Questionnaire (Christiansen, Goldman, & Inn, 1982) was completed by 116 abusing and nonabusing adolescents. Results indicate that adolescent alcohol abusers expect significantly more reinforcement from alcohol than do demographically comparable nonabusing peers. Adolescents with an alcohol-abusing parent reported expecting more cognitive and motor enhancement from drinking than did adolescents without a family history of abuse. Thus, both personal alcohol use and parental alcohol use are related to adolescent alcohol expectancies. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Adolescent drug abuse: helping families survive. International journal of mental health nursing

Usher K, Jackson D, O'Brien L. (2005)

Drug use and abuse carries risk in people of all ages. However, adolescents are particularly vulnerable to substance misuse. Adolescent drug use continues to be an area of concern with a number of adolescents developing problems associated with the use of various drugs. Negative sequelae associated with adolescent drug use include areas such as schooling, health, and family relationships. Difficulties with the legal system, schooling, or within the family are commonly the triggers for recognition of substance misuse problems in a young person. However, problems are usually well-established before they are recognized. The challenge of dealing with these problems will fall on families, particularly parents. This is a crisis for families, and ongoing support is needed if they are to overcome the challenges. Health workers (including nurses) are well-positioned to support families who are dealing with adolescent drug problems. In this paper we propose the adoption of a strengths approach as a strategy for developing resilience in families.

Adolescent mothers: support needs, resources, and support-education interventions

LETOURNEAU, N. L., STEWART, M. J. & BARNFATHER, A. K. (2004)

Adolescent mothers are prone to live in poor conditions, lack adequate financial resources, suffer high stress, encounter family instability, and have limited educational opportunities. These factors contribute to inadequate parent-child interactions and diminished infant development. Social support can promote successful adaptation for adolescent mothers and their children. This review article describes the support needs and challenges faced by adolescent parents and their children, the support resources available to and accessed by adolescent parents, and existing support-education intervention studies, to provide directions for future research. Relevant research published between January 1982 and February 2003 was obtained from online database indices and retrieved article bibliographies. Frequently encountered problems included small sample sizes and attrition, lack of suitable comparison groups, and measurement inconsistencies. When planning support-education interventions, content, duration, intensity, mode, level, intervention agents, and targets should be considered. Future research can address these challenges.

Adsolescent sexual behavior in two ethnic minority samples: The role of family variables

Miller KS, Forehand R, Kotchick BA. (1999)

Examined family structural variables (family income, parental education, and maternal marital status) and process variables (maternal monitoring, mother–adolescent general communication, mother–adolescent sexual communication, and maternal attitudes about adolescent sexual behavior) as predictors of indices of adolescent sexual behavior and risk due to sexual behavior in 907 Black and Hispanic families from Montgomery, Alabama; New York City; and San Juan, Puerto Rico. Mean ages of mother and daughter for the total sample were 40.27 yrs and 15.30 yrs, respectively. The findings indicate that family-structure variables failed to predict adolescent sexual behavior. In contrast, each of 3 family process variables predicted multiple indices of adolescent sexual behavior and risk due to sexual behavior. Neither adolescent gender nor ethnicity qualified the findings. Differences did emerge among the 3 locations and by reporter (adolescent or mother) of the family process variables.

Adult attachment in the context of refugee traumatisation: the impact of organized violence and forced separation on parental states of mind regarding attachment

De Haene, L., Grietens, H., & Verschueren, K. (2010)

Starting from an outline of the refugee experience as a process of cumulative traumatisation, we review research literature on mental health outcomes in refugees. Next, an integration of findings on relational processes in refugee families documents the role of the family unit as a key interactive context patterning the impact of sequential traumatisation. Relating these trauma- and migration-specific family processes to their central dimension of provision or disruption of emotional availability in a context of chronic adversity, we aim to explore the development of unresolved and insecure parental states of mind regarding attachment during forced migration. Starting the research report, a method discussion on the administration of 11 Adult Attachment Interviews with adult refugees as part of an explorative multiple case study integrates deontological and technical reflections on the use of the Adult Attachment Interview in a context of ongoing traumatisation. The paper then presents findings on adult attachment in refugees and highlights representational processes involved in the potential disruption of caregiver availability during refugee traumatisation.

Anhörigstöd i Orsa kommun

Hassis, L. (2009)

Våren 2008 publicerade Dalarnas forskningsråd en kartläggning över anhörigstödet i
Dalarna. Kartläggningen visade att arbetet med anhörigfrågor ser olika ut i Dalarnas
kommuner. Föreliggande rapport syftar till att kartlägga hur samarbetet i
anhörigfrågor ser ut i Orsa kommun. Studien bygger på i första hand personliga
intervjuer med anhörigvårdare och representanter från styrgruppen.
I Orsa finns ett anhörigcenter centralt beläget i anslutning till vårdcentral,
dagverksamhet och särskilt boende. En anhörigsamordnare är anställd på halvtid för
att samordna verksamheten och fungera som kontaktperson. Till sin hjälp har
anhörigsamordnaren en styrgrupp bestående av representanter från
frivilligorganisationer, kyrka och vårdcentral. Flera av styrgruppens representanter,
samt personal från dagverksamhet, fungerar även som sk. anhörigombud i
kommunen.
I programmet för 2009 erbjuds allt från sopplunch och syjunta/stickjunta till
närståendeträffar och föreläsningar/studiecirklar om stroke och demens. Våren
2009 hade anhörigcentret kontakt med strax över hundratalet anhörigvårdare, en
viss ökning från tiden för ovan nämnda kartläggning. En stor del av kontakterna
sker per telefon och med många av anhörigvårdarna är kontakten bara sporadisk.
Utöver anhörigcentrets verksamhet erbjuds stöd till anhörigvårdare främst genom
avlösning. Avlösningen ges genom dagverksamhet, korttidsboende och hemtjänst.
De intervjuade är alla nöjda med den verksamhet som bedrivs vid anhörigcentret.
Personalen vid anhörigcentret och dagverksamheten Ljusglimten framstår som viktiga
kuggar i arbetet med anhörigstöd i kommunen. Visst missnöje finns däremot med
hemtjänsten som enligt några av de intervjuade behöver bli mer flexibel och med
korttidsboendet som idag tycks inrymma personer med alltför skiftande
sjukdomsbild. Flera av de intervjuade påtalar en hos personalen (hemtjänst och
korttidsboende/särskilt boende) bristande förståelse för de problem såväl vårdtagare
som anhörigvårdare ställs inför. För att öka denna förståelse behövs utbildning och
information.

Anhörigvårdare – oorganiserad, oerkänd och oavlönad omsorgsresurs. Enkätstudie av närstående vårdgivare till parkinsonpatienter

Lökk, J. (2009)

Informella vårdgivare till kroniskt
sjuka personer utgörs i
stor utsträckning av oavlönade
närstående.
Dessa närstående upplever
en belastning och begränsning
i sin livssituation och
dåligt erkännande från omgivningen:
ju längre omsorgstid,
desto hög re belastning
inom vissa domäner.
Behovet av hemtjänst överstiger
den faktiskt erhållna
hjälpen.
Närstående är mer informerade
om sjukdomen vid längre
omsorgstid.
Samhället borde även beakta
närståendes roll vid planering
av vård och behandling
av kroniskt sjuka personer.

Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende

Josefsson, L. (2008)

Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.

Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende

Josefsson, L. (2008)

Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.

Anhörigvårdares hälsa

Erlingsson C, Magnusson L, Hanson E. (2010)

Att vara äldre anhörigvårdare kan innebära en svårbemästrad situation,
som tär på anhörigvårdarens hälsa och välbefinnande och som till och
med kan innebära en risk för ökad dödlighet. Den ibland alltför tunga
vårdbördan kan ha ett starkt negativ inverkan på anhörigvårdarens
hälsa pga. t.ex. stress, sömnlöshet, utmattning, depression, och oro.
Dock kan anhörigvårdandet också innebära glädje och tillfredsställelse.
Denna översikt baserar sig på information i 31 svenska vetenskapliga
artiklar om äldre anhörigvårdares hälsa.
De flesta artiklar belyser olika faktorer i vårdsituationen; t.ex. tillgänglighet
eller omfattning av anhörigvårdarens sociala nätverk, anhö-
rigvårdarens ekonomiska situation, ålder, kön, fysiska symtom, bemästringsstrategier,
tillfredsställelse, betydelsen av den sjukes diagnos
eller stödets utformning. Det framträder mycket tydligt i denna översikt
att det är bakom situationsfaktorer och handlingar som de kanske
starkaste, och oftast omedvetna, motivationselementen ligger; dvs.
anhörigvårdarens övertygelser och föreställningar. Föreställningarna,
tillsammans med upplevelserna, i synnerhet av ömsesidighet i vårdandet,
bildar ett levande dynamisk system som är unikt för varje individ
och familj.
Mest betydelsefullt är att eftersträva att hjälpa anhörigvårdare att
uppleva ömsesidighet i vårdandet och att försöka förstå anhörigvårdandet
så som det sker i ett kraftfält av föreställningar om varför och
hur man bör vårda den sjuke. Utan att vara medvetna om anhörigvårdarnas
egna föreställningar och upplevelser kommer vi – professionella,
anhörigvårdare, den sjuke, familjemedlemmar och vänner –
att treva i blindo när vi försöker hjälpa till.
Slutsatsen i denna rapport är att anhörigvårdares hälsa påverkas,
förbättras eller försämras, beroende på 1) anhörigvårdarens föreställningar
om anhörigvårdandet, 2) anhörigvårdarens upplevelse av öm-
~ 8 ~
sesidighet både i familjerelationer och i relationer med berörd personal,
och 3) om lämpliga stödinsatser finns tillgängliga.

Anknytning i förskolan. Vikten av trygghet för lek och lärande

Broberg, M., Hagström, B. & Broberg, A. (2012)

Anknytning i förskolan är en bok som visar att trygga relationer är en förutsättning för lärande, särskilt för små barn. Barn som utvecklat en trygg anknytning till minst en vuxen på förskolan litar på att de blir tröstade när behov uppstår – de kan då slappna av och ägna sig åt lek och utforskande.

Denna bok ger en grund i anknytningsteori och författarna visar med många exempel hur denna kunskap kan användas i förskolans vardag: vid inskolning, hämtning, samling, lek och vila.

Anknytning i förskolan är skriven för blivande och verksamma förskollärare och pedagoger som arbetar med de yngsta barnen i förskolan.

Anknytning i praktiken: Tillämpningar av anknytningsteorin

BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T. (2008)

Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).

Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.

Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.

Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter

Extramaterial finns på bokens hemsida www.nok.se/anknytning.

Anknytning i praktiken: Tillämpningar av anknytningsteorin

BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T. (2008)

Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).

Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.

Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.

Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter

Extramaterial finns på bokens hemsida www.nok.se/anknytning.

Anknytning i praktiken: tillämpningar av anknytningsteorin.

Broberg, Anders, Risholm-Mothander, Pia, Granqvist, Pehr, Ivarsson, Thord (2008)

Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den
viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).

Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.

Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.

Anknytningsteori: Betydelsen av nära känslomässiga relationer

BROBERG, A., GRANQVIST, P., IVARSSON, T. & RISHOLM, M., P. (2006)

I denna första breda kursbok på svenska ges en heltäckande presentation av anknytningsteorin.

Ur innehållet:

Evolution och anknytning

Separation och anknytning

Betydelsen av förälderns lyhördhet i samspelet

Äldre barns och vuxnas nära känslomässiga relationer

Barnets biologiska förutsättningar och hur de påverkar anknytningsrelationen.

Anknytningsteori (del 1) riktar sig till studenter och verksamma inom psykologi och psykiatri, samt barn- och ungdomsrelaterade yrken och utbildningar. Författarna kommer också hösten 2007 ut med Anknytning i praktiken, där de presenterar praktiska och kliniska tillämpningar med anknytningsteoretisk grund.
(Seelig)

Annas oroliga mamma. En berättelse om ångestsyndrom

Jessica Hjert (2014)

"Annas mamma har en sjukdom som gör att hon alltid är rädd, men Anna förstår inte alls varför. Hon är inte ens rädd för riktiga saker, som ormar, spindlar och sådant. Nej, hon är mest rädd för saker som inte finns eller sådant som inte ens hänt. "I boken får du följa Anna och hennes mamma Eva som har en ångestsjukdom. På ett enkelt sätt får du och ditt barn genom denna berättelse lära er mer om ångestproblematik. Barn och förälder kan tillsammans läsa boken för att diskutera kring rädsla, oro och ångest. Kanske blir boken en naturlig ingång till att presentera sina egna eller en anhörigs problem? Boken kan även användas som högläsning i grupp.Jessica Hjert är beteendevetare med en kandidatexamen i psykologi. Hon har tidigare gett ut "Måste alla vara så jävla lyckliga hela tiden -Svårigheterna föräldrar inte talar om."

Annas pappa får rättspsykiatrisk vård

Alphonce, Elisabet (2011)

Barn/ungdom
Text och illustrationer: Elisabet Alphonse

Här får vi en beskrivning hur det kan bli när en förälder blir intagen för rättspsykiatrisk vård. 

Annorlunda syskon – syskon med funktionshinder

Blomgren, Frida., Wanker, Maria (2010)

Att växa upp med ett funktionshindrat syskon

Annorlunda syskon handlar om hur det kan vara att växa upp med ett funktionshindrat syskon. Om svårigheter och glädjeämnen och hur det kan prägla de friska barnen.

Boken bygger på intervjuer med nio vuxna syskon där författaren Frida Blomgren har utgått ifrån tio frågeställningar, en för varje kapitel. Det som främst slår en är hur mycket de olika syskonen har gemensamt, både egenskaper och erfarenheter, trots att deras familjer och hemförhållanden har sett olika ut.

Många berättelser handlar om den oro för sjukdom som fanns under barndomen. När syskonen blir äldre finns också tanken på att den dag föräldrarna inte längre orkar eller är kvar i livet, kommer ansvaret att läggas på det friska syskonet. Samtidigt har många nära till glädje och de har lärt sig att inte oroa sig i onödan utan att leva i nuet.

Another Chance Hope and Health for the Alcoholic Family

Wegscheider, S. (1986)

The second edition of this classic work on recovery for alcohol families updates and expands the original, which won a Marty Mann Award as an outstanding contribution on alcohol communications. The first ten chapters of Another Chance pull the curtain back on the alcoholic family. We meet its cast of characters: the Dependent, the Enabler, the Hero, the Scapegoat, the Lost Child, the Mascot. The author then spells out a treatment plan for halting the downward spital of alcoholism -- a powerful blend of the Twelve Steps pioneered by Alcoholics Anonymous, the Family Reconstruction process developed by Virginia Satir, Wegscheider-Cruse's innovative and eclectic approach to therapy, and her own recovery from co-dependency. The second edition also addresses adult children of alcoholics, sprituality, and co-dependent therapists.

Anhörigkonsulentens arbete och yrkesroll

Winqvist, M. (2014)

Anhörigkonsulenter och motsvarande yrkesgrupper har en central betydelse för innehållet i och utvecklingen av anhörigstödet i landets kommuner. Nka har därför genomfört en enkätstudie med syftet att få en nationell överblick över hur denna relativt sett nya yrkesgrupp utformar och ser på sitt arbete. Denna rapport innehåller en sammanställning av svaren på denna enkät som riktade sig till landets samtliga anhörigkonsulenter.

Anhörigstöd. Information till anhörig-, brukar- och patientorganisationer

Socialstyrelsen (2015)

Skriften vänder sig till ideella organisationer för anhöriga, brukare och patienter. Den kan ge stöd i att formulera och utveckla organisationens syn på anhörigstöd enligt 5 kap. 10 § socialtjänstlagen, vad bestämmelsen betyder för enskilda och hur man kan arbeta vidare för de anhörigas bästa.

Anhörigstödets grundpelare

Johansson, L. (2008)

Ett framgångsrikt anhörigstöd står på några viktiga grundpelare. En av dessa är att stödet tillför något positivt till både den anhörige och den demenssjuke. Det menar docent Lennarth Johansson.

Anhörigvård

Bergh, A. (1997)

Boken handlar om vad som händer när de anhöriga, aktiva som passiva, och sjukhemmets eller hemtjänstens personal på olika sätt konfronteras med varandra.

Anhörigvård – arbete, ansvar, kärlek, försörjning

Sand A-B. (2002)

Hur påverkas livet om barnet föds med utvecklingsstörning, om tonåringen får livslångt hjälpbehov efter en trafikolycka, om den medelålders maken får stroke eller om en gammal förälder drabbas av demenssjukdom? Det var några av frågorna bakom ett omfattande forskningsprojekt om anhörigvård. I Sverige har samhället ansvaret för att äldre, sjuka och funktionshindrade ska få den hjälp de behöver. Ändå utförs merparten av all vård och omsorg av närstående, ibland under mycket svåra förhållanden. Resultaten som denna bok bygger på belyser anhörigvårdarnas situation ur ett socialt, ekonomiskt och arbetsmässigt perspektiv.

I dagens Sverige pågår en mycket tydlig förskjutning av arbete och ansvar från det offentliga till familjen. Med utgångspunkt i lagstiftningen diskuteras därför samhällets respektive individens ansvar för hjälpbehövande människor. En sådan diskussion är viktig eftersom konsekvenserna av ett minskande samhällsengagemang är outforskade när det gäller familjens och de anhörigas situation.

Boken vänder sig till de som på något sätt kommer i kontakt med frågor om anhörigvård. Den kan läsas av omsorgs- och sjukvårdspersonal, studerande vid utbildningar inom välfärdstjänstområdet, politiker samt övriga som är intresserade av frågor kring samhällsförändringar, välfärdsstat, jämställdhetsfrågor och framtida omsorgsproblematik. Även omsorgsbehövande och anhöriga kan ha glädje av boken.

Anhörigvård [elektronisk resurs] : Arbete, ansvar, kärlek, försörjning

Sand, A.-B. M. (2006)

Hur påverkas livet om barnet föds med utvecklingsstörning, om tonåringen får livslångt hjälpbehov efter en trafikolycka, om den medelålders maken får stroke eller om en gammal förälder drabbas av demenssjukdom? Det var några av frågorna bakom ett omfattande forskningsprojekt om anhörigvård. I Sverige har samhället ansvaret för att äldre, sjuka och funktionshindrade ska få den hjälp de behöver. Ändå utförs merparten av all vård och omsorg av närstående, ibland under mycket svåra förhållanden. Resultaten som denna bok bygger på belyser anhörigvårdarnas situation ur ett socialt, ekonomiskt och arbetsmässigt perspektiv.

I dagens Sverige pågår en mycket tydlig förskjutning av arbete och ansvar från det offentliga till familjen. Med utgångspunkt i lagstiftningen diskuteras därför samhällets respektive individens ansvar för hjälpbehövande människor. En sådan diskussion är viktig eftersom konsekvenserna av ett minskande samhällsengagemang är outforskade när det gäller familjens och de anhörigas situation.

Boken vänder sig till de som på något sätt kommer i kontakt med frågor om anhörigvård. Den kan läsas av omsorgs- och sjukvårdspersonal, studerande vid utbildningar inom välfärdstjänstområdet, politiker samt övriga som är intresserade av frågor kring samhällsförändringar, välfärdsstat, jämställdhetsfrågor och framtida omsorgsproblematik. Även omsorgsbehövande och anhöriga kan ha glädje av boken.

Anhörigvård [elektronisk resurs].

Bergh, A. (2005)

Boken handlar om vad som händer när de anhöriga, aktiva som passiva, och sjukhemmets eller hemtjänstens personal på olika sätt konfronteras med varandra.

Ansvar, kärlek och försörjning. Om anställda anhörigvårdare i Sverige.

Mossberg Sand, A-B. (2000)

Avhandling

In Sweden the municipalities have the responsibility to provide the elderly, ill and disabled with the assistance they need to make home living possible. Still, most caring takes place in the family and is performed by relatives. Sometimes a relative carer can be employed and paid by the municipality to perform the help. The aim of this study is to explore the situation of employed family carers. Another purpose has been to investigate how responsibility and work are distributed between society and kin care providers. The results are based upon a project containing four partial studies; a survey investigation based on a random sample with replies from 1197 relative care providers in Sweden representing one fifth of all employed carers at the time. This was followed by an interview study comprising 40 relative care providers and care recipients. The other two partial studies were targeted at social and elderly care management and home-help service assistants respectively. The carers are made up ofthree main groups ;children, spouses and parents. There is also a smaller group with siblings, daughters-in-law, other relatives and friends. The main part ofthe kin care providers consists ofwomen, but 15 percent are men. The clas s status is principally that ofworkers and lower civil servants, although all social classes are represented. Apparently, it is not easy to combine care for relatives with a full effort in the regular labour market. Despite the fact that most women were working part-time, it was sometimes problematic to combine shorter hours with the caring. Thanks to the salary, the majority of the kin care providers have not suffered any economic losses. Apart from the bread-winning aspect, the salary has another important significance - even though the monetary sUll at times is extremely small, it is regarded as recognition of the work. One conclusion, which can be drawn from this investigation, is that the employment and salary are a very appreciated form of support. The salary is a replacement for a work effort, and it has also provided the possibility to quit or reduce other work in order to perform the care. The majority of the kin care providers are content, although many ofthem want better employment terms and higher wages - or rather conditions which correspond to other care work, and a salary which corresponds to the effort. As far as the division between the society and the kin care providers is concerned, it can be said that a lot of the re.sponsibility and work lies with the relatives. Some relatives do not want too much societal intervention, but settle with monetary replacement. Others have apparent needs of assistance, and a working situation which is inhumane. In some cases, it even amounts to a societal abuse of people's responsibility for their relatives.

Anticipated support from neighbors and physical functioning during later life

Shaw, B. A. (2005)

This study has two main objectives: (1) to assess age variations in perceived support from neighbors among a nationally representative sample of adults aged 25 to 74 and (2) to examine the association between anticipated support from neighbors and physical functioning within a subsample of older adults. The findings suggest that anticipated support from neighbors is stronger among older adults, primarily because of more frequent contact with neighbors and residential stability. Within the older subsample, an inverse association between perceived support from neighbors and functional limitations is evident. Further analyses show that this association is strongest among those with infrequent contact with family members. No differences in this association were found with respect to marital status. Taken together, it appears that anticipated support from neighbors facilitates the maintenance of functional ability among some older adults. Interventions aiming to promote successful aging by enhancing this source of support should be developed and evaluated.

Anticipatory Grief Among Close Relatives of Patients in Hospice and Palliative Wards

Johansson, Å. K. and A. Grimby (2012)

A Swedish widowhood study revealed that four out of ten widows regarded the pre-loss period more stressful than the post-loss. The present investigation of close relatives to patients dying from cancer (using interviews and the Anticipatory Grief Scale) found that preparatory grief involves much emotional stress, as intense preoccupation with the dying, longing for his/her former personality, loneliness, tearfulness, cognitive dysfunction, irritability, anger and social withdrawal, and a need to talk. Psychological status was bad one by every fifth. However, the relatives mostly stated adjustment and ability to mobilize strength to cope with the situation. The results suggest development of support and guiding programs also for the anticipatory period.

Anticipatory Grief Among Close Relatives of Persons With Dementia in Comparison With Close Relatives of Patients With Cancer

Johansson, Å. K., Sundh, V., Wijk, H., & Grimby, A. (2012)

Close relatives of persons with dementia self-reported reactions on the Anticipatory Grief Scale (AGS), were observed by nurses (Study I), and compared with relatives of cancer patients in a study using the same methodology (Study II). Study I showed an overall stressful situation including feelings of missing and longing, inability to accept the terminal fact, preoccupation with the ill, tearfulness, sleeping problems, anger, loneliness, and a need to talk. The ability to cope was, however, reported high. Self-assessments and nurses' observations did not always converge, e.g. for the acceptance of the illness. The reactions of the relatives in the dementia and the cancer groups showed more similarities than dissimilarities. However, the higher number of responding spouses in the cancer group may have influenced the outcome.

Antologin: Att se barn som anhöriga - om relationer, interventioner och omsorgsansvar

Järkestig Berggren Ulrika, Magnusson Lennart, Hanson Elizabeth redaktörer (2015)

Barn föds anhöriga och växer upp som anhöriga till föräldrar och syskon och andra viktiga personer i familjen. I dessa relationer har minderråriga barn sin trygghet och tillitsbas att bygga sitt liv på. Omvänt får de svårigheter som drabbat föräldrar eller syskon konsekvenser också för barn. Vilka är dessa konsekvenser och hur kan vi förstå barns anhörigskap? Vilka roller kan barnet ha i sin familj? När behöver barn och föräldrar stöd och hur?
I denna antologi försöker forskare som deltar i eller är inbjudna till det svenska forskarnätverket "Barn som anhöriga" att utifrån aktuell forskning undersöka, beskriva och förklara innebörden i att barn är anhöriga. Olika teman lygfs såsom barns positoioner i familjen där utsatthet och beroende i relation till föräldrar beskrivs men också barns aktiva agerande i relation till föräldrar och syskon belyses.
Ett sådant exempel är när barn blir omsorgsgivare till syskon eller föräldrar, vilket också beskrivs i en internationell utblick. Vidare beskrivs hur många barn som är anhöriga i de sammanhang som hälso- och sjukvårdslagen omfattar och hur det går för dem i skolan. Ett avsnitt tar upp aktuell kunskap om befintliga interventioner för stöd till barn och föräldrar. Även stöd till anhöriga syskon och forskning om om våld i familjen belyses.
Boken vänder sig till studerande på sjuksköterske-, läkar-, socionom- och lärarprogrammet samt övriga proffessionsutbildningar som i sin yrkesverksamhet möter anhöriga barn och deras föräldrar i behov av stöd. Den ä räven avsedd för beslutsfattare, verksamhetsutvecklare, enskilda personer och idéburna organisationer som söker kunskap om barns livsvillkor som anhöriga.

Apelsinträdgården

Roca Ahlgren, Malin (2018)

Alla människor har ett eget apelsinträd. På vissa växer det många apelsiner och på andra bara några stycken. Men varje dag växer det nya. Varje apelsin ger ork att kunna göra olika saker. Som att klä på sig, äta, prata, duscha eller handla. Elinas mamma har inte så många apelsiner på sitt träd. Dom försvann en dag, för att hon orkat för mycket under en lång tid. En bok om utmattningssyndrom. Boken är tänkt som stöd för drabbade barnfamiljer.

Applying the Theory of Motivated Information Management to adult children's discussions of caregiving with aging parents

Fowler, C. and W. A. Afifi (2011)

Adult children are perhaps the most important source of eldercare for aging parents. Unfortunately, they rarely discuss potential eldercare arrangements with their parents prior to adopting a caregiving role, which may make adapting to the parent's transition to dependency all the more challenging. The Theory of Motivated Information Management (TMIM) is a social-psychological framework that has had success predicting information-seeking decisions about health issues. As such, it served as the theoretical basis for examining adult children's pursuit of information from their elderly parents about caregiving preferences. In addition, this study serves as the first empirical test of a revised version of the TMIM, with an expanded treatment of the role played by emotion. The results of an over-time study attest to the utility of the revised TMIM predictions in this context, and offer insight into the factors that predict adult children's decision to discuss caregiving with their parents.

Approaching the prevalence of the full spectrum of fetal alcohol spectrum disorders in a South African population-based study

May PA, Blankenship J, Marais AS, Gossage JP, Kalberg WO, Barnard R, De Vries M, Robinson LK, Adnams CM, Buckley D, Manning M, Jones KL, Parry C, Hoyme HE, Seedat S. (2013)

BACKGROUND:
The prevalence and characteristics of fetal alcohol spectrum disorders (FASD) were determined in this fourth study of first-grade children in a South African community.
METHODS:
Active case ascertainment methods were employed among 747 first-grade pupils. The detailed characteristics of children within the continuum of FASD are contrasted with randomly selected, normal controls on (i) physical growth and dysmorphology; (ii) cognitive/behavioral characteristics; and (iii) maternal risk factors.
RESULTS:
The rates of specific diagnoses within the FASD spectrum continue to be among the highest reported in any community in the world. The prevalence (per 1,000) is as follows: fetal alcohol syndrome (FAS)-59.3 to 91.0; partial fetal alcohol syndrome (PFAS)-45.3 to 69.6; and alcohol-related neurodevelopmental disorder (ARND)-30.5 to 46.8. The overall rate of FASD is therefore 135.1 to 207.5 per 1,000 (or 13.6 to 20.9%). Clinical profiles of the physical and cognitive/behavioral traits of children with a specific FASD diagnosis and controls are provided for understanding the full spectrum of FASD in a community. The spectral effect is evident in the characteristics of the diagnostic groups and summarized by the total (mean) dysmorphology scores of the children: FAS = 18.9; PFAS = 14.3; ARND = 12.2; and normal controls, alcohol exposed = 8.2 and unexposed = 7.1. Documented drinking during pregnancy is significantly correlated with verbal (r = -0.253) and nonverbal ability (r = -0.265), negative behaviors (r = 0.203), and total dysmorphology score (r = 0.431). Other measures of drinking during pregnancy are significantly associated with FASD, including binge drinking as low as 3 drinks per episode on 2 days of the week.
CONCLUSIONS:
High rates of specific diagnoses within FASD were well documented in this new cohort of children. FASD persists in this community. The data reflect an increased ability to provide accurate and discriminating diagnoses throughout the continuum of FASD.

Are Children of Holocaust Survivors Less Well- Adapted? A Meta-Analytic Investigation of Secondary Traumatization

Van IJzendoorn, M. H. (2003)

H. Keilson (1979) coined the term "sequential traumatization" for the accumulation of traumatic stresses confronting the Holocaust survivors before, during, and after the war. A central question is whether survivors were able to raise their children without transmitting the traumas of their past. Through a series of meta-analyses on 32 samples involving 4,418 participants, we tested the hypothesis of secondary traumatization in Holocaust survivor families. In the set of adequately designed nonclinical studies, no evidence for the influence of the parents' traumatic Holocaust experiences on their children was found. Secondary traumatization emerged only in studies on clinical participants, who were stressed for other reasons. A stress-diathesis model is used to interpret the absence of secondary traumatization in nonclinical offspring of Holocaust survivors.

Are parental ADHD problems associated with a more severe clinical presentation and greater family adversity in children with ADHD?

Agha, S. S., Zammit, S., Thapar, A., & Langley, K. (2013)

Although Attention Deficit Hyperactivity Disorder (ADHD) is recognised to be a familial and heritable disorder, little is known about the broader family characteristics of having a parent with ADHD problems. The main aim of this study was to investigate the relationship between parent ADHD problems, child clinical presentation and family functioning in a sample of children with ADHD. The sample consisted of 570 children with ADHD. Child psychopathology was assessed using a semi-structured diagnostic interview. Questionnaires were used to assess ADHD in the parents (childhood and current symptoms), family environment and mother/father-child relationship. Parental ADHD problems were associated with a range of adverse clinical outcomes in children with no difference in effects for mothers with ADHD problems compared to fathers with ADHD problems. Levels of maternal hostility were higher in families where mothers had ADHD problems, but reduced where fathers had ADHD problems. Parental ADHD problems index higher risk for more severe clinical presentation of ADHD in children and higher levels of family conflict (where there are maternal but not paternal ADHD problems). This study highlights that children with more severe behavioural symptoms are more likely to have a parent with persistent ADHD which has important implications when considering treatment and intervention strategies.

Are the ICF activity and participation dimensions distinct?

Jette AM, Haley SM, Kooyoomjian JT. (2003)

Objective: To test the hypothesis that distinct Activity and
Participation dimensions of the International Classification
of Functioning, Disability, and Health could be identified
using physical functioning items drawn from the Late Life
Function and Disability Instrument.
Design: A cross-sectional, survey design was employed.
Subjects: The sample comprised 150 community-dwelling
adults aged 60 years and older.
Methods: Exploratory factor analysis was used to identify
interpretable dimensions underlying 48 physical functioning
questionnaire items.
Results: Findings revealed that one conceptual dimension
underlying these physical functioning items was not suffi-
cient to adequately explain the data (X2 = 2383; p  0.0001).
A subsequent solution produced 3 distinct, interpretable
factors that accounted for 61.1% of the variance; they were
labeled: Mobility Activities (24.4%), Daily Activities
(24.3%), and Social/Participation (12.4%). All 3 factors
achieved high internal consistency with coefficient alphas of
0.90 or above.
Conclusion: Within physical functioning, distinct concepts
were identified that conformed to the dimensions of Activity
and Participation as proposed in the ICF. We believe this is
the first empirical evidence of separate Activity and
Participation dimensions within the International Classification
of Functioning, Disability, and Health classification.

Article: Specialized substance abuse treatment for women and their children. An analysis of program design

Uziel-Miller ND, Lyons JS (2000)

In the present study, 36 specialized substance abuse treatment programs for women and their children were identified and chosen for review. These programs provide a wide range of services including substance abuse, mental health and medical treatment, life skills training (i.e. vocational and parenting training), and social services (i.e. child care and transportation). A cluster analysis was conducted, and three distinct patterns of program design were identified. Results suggest that programs vary considerably regarding the extent to which comprehensive services are provided and to whom they are offered. Many programs that appear to be comprehensive fail to provide the full range of services to all those who need them. In particular, many programs for pregnant women seem to focus almost exclusively on pregnancy-related issues. As such, specialized substance abuse treatment for women may be at risk for becoming too specialized. Recommendations are made for future substance-related program planning for women and their children.

Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy

Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP. (2000)

Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.

Articles: Psychosocially enhanced treatment for cocaine-dependent mothers Evidence of efficacy.

Volpicelli JR, Markman I, Monterosso J, Filing J, O'Brien CP. (2000)

Eighty-four cocaine-dependent mothers were randomly assigned either to a case management-oriented outpatient treatment program (CM), or to a psychosocially enhanced treatment program (PET). Both programs included onsite child care and both offered daily group therapy sessions. Subjects randomized to the PET condition were offered a variety of additional onsite services designed to meet their special psychosocial needs including parenting skills class, access to a psychiatrist, individual therapy sessions, and GED class. Patients in the CM program could gain access to these services only through referrals to community resources. Program retention was significantly better for patients in the PET condition. In addition, while the mean number of days of cocaine use decreased from baseline in both groups, the PET group had significantly fewer days of cocaine use at 12-month follow-up than the CM group. These results show that providing psychosocial enhancement services onsite can improve treatment outcome for cocaine-dependent mothers.

Assessing Family Caregiver Needs

AARP Public Policy Institute (2012)

Caregiver assessment is a systematic process of gathering information about a
caregiving situation to identify the specific problems, needs, strengths, and resources
of the family caregiver, as well as the ability of the caregiver to contribute to the needs
of the care recipient. Effectively assessing and addressing caregiver needs can maintain
the health and well-being of caregivers, sustain their ability to provide care, prevent or
postpone nursing home placement, and produce better outcomes for the care recipient.

Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers

Joseph S, Becker S, Becker F, Regel S. (2009)

BACKGROUND: Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects. METHOD: Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited. RESULTS: Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported. CONCLUSION: The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.

Assessment of everyday functioning in young children with disabilities: An ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory

Östensjö S, Bjorbäkmo W, Brogren Carlberg E, Völlestad NK. (2006)

BACKGROUND:
Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating role of the environment on disability, using different measurement scales. The construction of the Functional Skills scales, which measure capability, and the Caregiver Assistance scales, which measure performance, was based on the Nagi disablement scheme. The International Classification of Functioning, Disability and Health (ICF) represents a new framework of functioning and disability that could be used to compare the measurement constructs and the content of different outcome measurements.
PURPOSE:
To examine the conceptual basis and the content of the PEDI using the ICF.
METHOD:
Phrases that describe the conceptual basis of the PEDI scales and of the ICF classifications were systematically collected and compared. Two researchers classified the item content of the Functional Skills scales independently before consensus was reached.
RESULTS:
The analyses indicate that the conceptual basis of the PEDI scales to a large extent match the ICF concepts of activity, participation and environmental factors. Both the PEDI and the ICF use the constructs of capacity and performance, but differ in how to operationalise these constructs. The classification of the Functional Skills scales shows that the PEDI primarily is a measure of activities and participation. The frequently use of environmental codes to classify the context of the requested functions demonstrates that the PEDI has incorporated the environment into the assessment.
CONCLUSIONS:
Our analyses indicate that the ICF could serve as a conceptual framework to clarify the measurement construct of the PEDI scales, and as taxonomy to describe and clarify the item content of the Functional Skills scales. Both as framework and taxonomy the ICF showed limitations in covering functioning in early childhood.

Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

Scharlach, A.E., Gustavson, K. & Dal Santo, T. S. (2007)

Abstract
PURPOSE:

This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients.
DESIGN AND METHODS:

Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services.
RESULTS:

Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers.
IMPLICATIONS:

Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

Assisting people with multiple disabilities actively correct abnormal standing posture with a Nintendo Wii balance board through controlling environmental stimulation

Shih CH, Shih CT, Chu CL. (2010)

The latest researches adopted software technology turning the Nintendo Wii Balance Board into a high performance change of standing posture (CSP) detector, and assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture). This study extends Wii Balance Board functionality for standing posture correction (i.e., actively adjust abnormal standing posture) to assessed whether two persons with multiple disabilities would be able to actively correct their standing posture by controlling their favorite stimulation on/off using a Wii Balance Board with a newly developed standing posture correcting program (SPCP). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Data showed that both participants significantly increased time duration of maintaining correct standing posture (TDMCSP) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.

Assistive technology: Interventions for individuals with severe/profound and multiple disabilities.

Lancioni, G. E., Sigafoos, J., O'Reilly, M. F., & Singh, N. N. (2012)

For people with severe/profound and multiple disabilities, managing the basic necessities of daily life often poses myriad challenges. Despite great odds, advances in assistive technology are making a difference in these individuals' lives. Advances in microswitches, voice outcome communication aids, and computer-based systems are creating new opportunities for living independently, improving basic life skills, and reducing problem behaviors among individuals with combined motor, sensory, and intellectual disabilities.
This unique volume examines how education and rehabilitation can improve the lives of even those individuals most affected by severe/profound and multiple disabilities. Interventions currently in use and in experimental stages are surveyed in terms of how they work and their applicability to clients with various needs. In addition, it examines the characteristics of developmentally disabled populations and offers guidelines for choosing suitable technologies. It presents empirical evidence on the advances in improving interaction with caregivers, control of the home environment, handling self-care tasks, and other core skills.
Assistive Technology examines interventions that are innovative, respectful of the dignity of clients, and practical for ongoing use, including:
• Microswitches in habilitation programs.
• Speech-generating devices for communication and social development.
• Instructional technology for promoting academic, work, and leisure skills.
• Assistive technology for promoting ambulation.
• Orientation systems for promoting movement indoors.
• Assistive technology for reducing problem behaviors.
A state-of-the-art guide to a growing field, Assistive Technology is an invaluable resource for researchers, clinicians, graduate students as well as clinicians and allied professionals in developmental psychology, rehabilitation and rehabilitative medicine, learning and instruction, occupational therapy, speech-language pathology, and educational technology.

Association between parents' PTSD severity and children's psychological distress: a meta-analysis

Lambert, J. E., Holzer, J., & Hasbun, A. (2014)

The authors conducted a meta-analysis of studies on the correlation between parents' PTSD symptom severity and children's psychological status. An extensive search of the literature yielded 550 studies that were screened for inclusion criteria (i.e., parent assessed for PTSD, child assessed for distress or behavioral problems, associations between parent PTSD and child status examined). Sixty-two studies were further reviewed, resulting in a final sample of 42 studies. Results yielded a moderate overall effect size r = .35. The authors compared effect sizes for studies where only the parent was exposed to a potentially traumatic event to studies where both parents and children were exposed. A series of moderators related to sample characteristics (sex of parent, type of traumatic event) and study methods (self-report vs. diagnostic interview, type of child assessment administered) were also evaluated. The only significant moderator was type of trauma; the effect size was larger for studies with parent-child dyads who were both exposed to interpersonal trauma (r = .46) than for combat veterans and their children (r = .27) and civilian parent-child dyads who were both exposed to war (r = .25). Results support the importance of considering the family context of trauma survivors and highlight areas for future research.

Association between the caregiver's burden and physical activity in community-dwelling caregivers of dementia patients

Hirano A, Suzuki Y, Kuzuya M, Onishi J, Hasegawa J, Ban N, et al. (2011)

Physical activity in the elderly has a significant influence on their health status. Studies have shown that elderly caregivers have fewer physical activities relative to non-caregivers. The present study aimed to identify factors associated with lower physical activity in elderly caregivers of demented patients. A cross-sectional survey of 50 elderly caregivers living with patients diagnosed with Alzheimer's-type dementia showed that the Zarit caregiver burden interview (ZBI) scores were significant predictors of physical activity measured by the questionnaire score (QS) of physical activities. Among the three subscales of the QS, it was only leisure time activity scores (LS) that the ZBI scores significantly predicted. The numbers of chronic diseases were associated with lower household activity scores (HS) and sport activities scores (SS). Physical activities, in particular leisure activities, were found to be inversely associated with care burden assessed by the ZBI. Interventions to increase the physical activity levels of older caregivers may improve their health status and quality of life.

Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort

Keysor JJ, Jette AM, Coster WJ, Bettger JP, Haley SM. (2006)

Keysor JJ, Jette AM, Coster W, Bettger JP, Haley SM. Association of environmental factors with levels of home and community participation in an adult rehabilitation cohort.

Objective

To examine whether home and community environmental barriers and facilitators are predictors of social and home participation and community participation at 1 and 6 months after discharge from an acute care or inpatient rehabilitation hospital.

Design

Cohort study.

Setting

Postacute care.

Participants

Adults (N=342) age 18 years or older with a diagnosis of complex medical, orthopedic, or neurologic condition recruited from acute care and inpatient rehabilitation facilities. The mean age ± standard deviation of participants was 68±14 years; 49% were women and 92% were white.

Interventions

Not applicable.

Main Outcome Measures

Participation in social, home and community affairs as assessed with the Participation Measure for Post-Acute Care.

Results

Adjusting for covariates, 1 month after discharge a greater presence of home mobility barriers (P<.01) was associated with less social and home participation; whereas greater community mobility barriers (P<.01) and more social support (P<.001) were associated with greater participation. At 6 months, social support was the only environmental factor associated with participation after adjusting for covariates.

Conclusions

This study provides new empirical evidence that environmental barriers and facilitators do influence participation in a general rehabilitation cohort, at least in the short term.

Key Words
Disabled persons; Environment; Outcome assessment (health care); Rehabilitation
Supported by the National Institute of Disability and Rehabilitation Research, U.S. Department of Education (grant no. H133B990005), the National Institute of Child Health and Human Development (grant no. 5 K12 HD043444-02), and the Arthritis Foundation (arthritis investigator award).

No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.

Avesta avlösarteam. Hur avlösning i hemmet kan anpassas till individuella behov

Stålgren Lind, M. (2008)

Resultatenhetschefen, som är ansvarig för verksamheten poängterar att anhörigstöd innebär "ett annat synsätt och en annan lyhördhet för en annan problematik", vilket kräver ett visst förhållningssätt. Vikten av att det är samma person som avlöser vid varje tillfälle betonas, eftersom det gör att både den anhörige och den sjuke närstående kan känna sig trygga.

I dagsläget är det tre undersköterskor som arbetar som avlösare. De har fått särskild utbildning i medmänskligt stöd, palliativ vård, stroke och demens. Avlösarteamet har ett möte med anhörigsamordnaren varje vecka och varannan månad får gruppen professionell handledning av en beteendevetare. Samtliga undersköterskor i avlösarteamet framhåller att teamet fungerar mycket bra. De säger till och med att arbetssättet är något de "spånat på flera gånger i livet, just att få jobba i team mot samma mål och nu är man här". De betonar att de vuxit som människor, att de upplever att de kan göra skillnad och att de inte skulle vilja byta tillbaka till hur de arbetade tidigare. Avlösarna understryker att arbetet i avlösarservicen skiljer sig mycket från arbetet i hemtjänsten. I dagsläget har avlösarna sex till åtta hushåll var som de arbetar i, vilket framhålls som maxantalet som de hinner med. Efterfrågan fortsätter emellertid att öka.

Flera av dem som idag har avlösarinsatser i hemmet har inte tidigare haft någon kontakt med den offentliga vården och omsorgen. Avlösarteamet poängterar att de skulle kunna hitta många fler som har behov av den här insatsen, men att ett stort antal av dem som vårdas hemma anses för friska för att den anhörige ska få beviljat anhörigstöd. Detta gör att anhörigstödet inte kan fylla den preventiva funktion som det borde.

De anhöriga har varit uteslutande positiva till avlösarteamet och pekat på omfattande kvalitetsförbättringar i deras enskilda liv. Samtliga anhöriga framhåller att det är ytterst viktigt att det är samma person som kommer och avlöser i hemmet, för att skapa trygghet och kontinuitet för den närstående. För den som är demenssjuk är detta särskilt viktigt.

Det hembesök som görs inledningsvis beskrivs som mycket positivt. De som är berörda får möjlighet att bekanta sig med varandra i hemmiljön, och det skapar förutsättningar för att man ska känna sig trygg med den nya insatsen. Familjen tycker också att det är mycket positivt att det är kommunen som tar kontakt och initierar hembesöket eftersom det många gånger kan vara svårt att ta det steget själv.

Arbetssättet möjliggör såväl flexibilitet och kontinuitet som trygghet och individanpassning. Dessutom görs sannolikt ekonomiska besparingar på lång sikt i och med att en inflyttning på ett heldygnsboende kan skjutas upp, men också genom att anhörigas hälsa och ork bevaras. Det finns ett stort stöd för arbetssättet inom samtliga led i kommunen och i slutet av år 2007 beslutades att avlösarna helt och hållet ska lyftas ur sina ordinarie arbeten för att arbeta i avlösarteamet. Detta kommer att underlätta mycket för såväl avlösarna, som får en tydligare roll och en mer regelbunden arbetssituation, som för de anhöriga, som får lättare att boka tider som passar deras behov. Om avlösarteamet vidareutvecklas till att även fungera som demensteam vid behov görs ytterligare kvalitetsvinster.

Teamet arbetar för närvarande med avlösarservice i 26 hushåll. Finns det tid över prioriteras den efter behov för individuellt stöd, råd och handledning till anhörigvårdaren, utöver den avlösningen om tio timmar/månad. Ambitionen är att ge stödet så tidigt som möjligt för att förebygga ohälsa och öka chansen till bibehållen livskvalitet. Avlösarteamet har också fått tid för reflektion, handledning och dokumentation. Skulle det därutöver finnas tid ger teammedlemmarna lite "guldtid" för de boende på ett av kommunens demensboende.

Avhandling om anhörigas delaktighet vid kommunala äldreboenden

Jansson, F. (2015)

Under fyra månader vistades Jessica
Holmgren vid tre kommunala äldreboenden
i landet. Resultatet blev en doktorsavhandling
som bland annat visar att
anhöriga betraktas som besökare, och att
det behövs alternativa synsätt både på anhöriga
och delaktighet.

Avoidable mortality among child welfare recipients and intercountry adoptees: a national cohort study

Hjern A, Vinnerljung B & Lindblad F (2004)

OBJECTIVE:
To compare rates of avoidable mortality in adolescence in child welfare recipients and intercountry adoptees with the general population.
DESIGN:
A register study of the entire national cohort of 989 871 Swedish residents born 1973-82 in the national census of 1990. Multivariate Cox analyses of proportional hazards were used to analyse avoidable deaths between 13 to 27 years of age during 1991-2000.
PARTICIPANTS:
12 240 intercountry adoptees, 6437 foster children, 15 868 subjected to other forms of child welfare interventions, and the remaining 955 326 children in the cohort.
RESULTS:
Intercountry adoptees had a high sex and age adjusted relative risk (RR) for suicide death only (RR 3.5; 95% CI 2.3 to 5.0) in comparison with the general population, while foster children and adolescents who had received other kinds of child welfare interventions had high sex and age adjusted RRs for suicide death; 4.3 (2.8 to 6.6) and 2.7 (1.9 to 3.9) respectively, as well as for other avoidable deaths; RRs 2.5 (1.6 to 3.7) and 2.8 (2.1 to 3.6). The RRs of avoidable deaths for foster children and other child welfare recipients decreased considerably when compared with youth brought up in homes with similar psychosocial characteristics as their original home.
CONCLUSION:
Children in substitute care in early childhood were at particular risk for suicide death in adolescence and young adulthood. Child welfare interventions were insufficient to prevent excess deaths in children at risk.

Bara funktionshindrad? Funktionshinder och intersektionalitet

Grönvik, Lars & Söder, Mårten (2008)

Människan som social varelse kategoriseras på många olika sätt, men detta bortser vi ofta ifrån när det gäller personer med funktionsnedsättning. Därför blir de just personer med funktionsnedsättning, utan kön, utan etnicitet, utan sexualitet, utan klasstillhörighet och så vidare.

Under senare år har begreppet intersektionalitet blivit allt vanligare, framförallt inom de forskningsinriktningar som sysslar med människor som uppfattas som marginaliserade och/eller underordnade. Begreppet söker fånga det samspel mellan olika dimensioner som man menar är nödvändigt för att på allvar förstå situationen för dessa grupper.

Forskningen om funktionshinder har hittills saknat ett sådant perspektiv, något som kan leda till att dess analyser och teorier blir endimensionella och svåra att tillämpa.

Den här antologin är ett första svenskt bidrag till införandet av ett intersektionellt perspektiv i forskningen om funktionshinder. I boken diskuteras hur funktionshinder samspelar med andra dimensioner som kön, klasstillhörighet, sexualitet och etnicitet. Boken ger också exempel på hur metodologiska perspektiv, som kritisk realism och konstruktivism, kan bidra till intersektionell forskning om funktionshinder.

Bara funktionshindrad? vänder sig främst till studenter och forskare inom vård-, beteende- och samhällsvetenskapliga discipliner.

Barn i familjer med alkohol- och narkotikaproblem: Omfattning och analys

Statens folkhälsoinstitut (2008)

Statens folkhälsoinstitut har undersökt hur många barn i Sverige som växer upp med föräldrar som antingen riskkonsumerar eller missbrukar alkohol, eller som missbrukar narkotika. Resultaten av denna studie, tillsammans med en analys av dessa barns situation, kan återfinnas i denna rapport.

Ett barn som växer upp med en eller två missbrukande föräldrar kan man anta utsätts för stora känslomässiga påfrestningar. Trots detta har det saknats uppgifter om hur vanlig en sådan situation är och någon analys av hur dessa barns situation ser ut. Statens folkhälsoinstitut fick därför i januari 2008 i uppdrag av regeringen att kartlägga frågan.

Analysen har utförts som en systematisk genomgång av vetenskapliga studier, och presenterar en samlad diskussion av resultaten med förhoppningen att kunna erbjuda ett underlag för förebyggande insatser inom området.

Rapporten vänder sig i första hand till beslutsfattare och yrkesverksamma med ansvar för förebyggande arbete inom kommuner, landsting, staten och frivilliga organisationer.

Barn i samhällsvård

Andersson, Gunvor (1995)

Många barn riskerar att växa upp under svåra familjeförhållanden. Samhället väljer därför ibland att skilja barn från sina föräldrar för att placera dem på institution eller i familjehem.

Författaren presenterar i denna bok aktuell forskning om barn i samhällsvård och ger teoretiska utgångspunkter för förståelsen av relationer, separationer och barns olika sätt att bemästra svårigheter. Vi får under en tioårsperiod följa en grupp barn som på grund av föräldrarnas missbruk tidigt placerats på barnhem och sedan i familjehem. Författaren visar att barn, föräldrar, fosterföräldrar och socialarbetare alla är delaktiga i utfallet av samhällsvården - även om socialtjänsten och samhällsvillkoren anger ramarna.

Boken är avsedd för högskoleutbildning i psykologi, socialt arbete och social omsorg samt för socialsekreterare. Den är av stort intresse för alla som arbetar med utsatta barn och familjer.

Barn med frihetsberövade föräldrar – Kartläggning och analys

Socialstyrelsen (2018)

Den här rapporten redovisar resultatet av Socialstyrelsens kartläggning av de behov som barn med frihetsberövade föräldrar kan ha samt vilket stöd som finns för dessa barn. Socialstyrelsen har även analyserat om det stöd som finns för barnen motsvarar deras behov och om socialtjänsten har behov av kunskapsstöd om målgruppen.

Barn med personlig assistans. Möjligheter till utveckling, självständighet och delaktighet

Socialstyrelsen (2014)

För de allra flesta barn och unga med funktionsnedsättning är personlig assistans
en insats som fungerar bra och har inneburit en förbättrad livskvalitet.
Med barnets bästa i fokus har dock Socialstyrelsen identifierat ett antal problem
och risker i samband med att barn och unga beviljas personlig assistans.
Ett problemområde gäller hur unga med funktionsnedsättning ska kunna
bli så självständiga som möjligt och hur deras frigörelseprocess kan underlättas.
Det gäller i synnerhet när föräldrar i stor utsträckning är personliga assistenter
åt sina barn. Socialstyrelsen menar att externa assistenter kan ha en
positiv inverkan på möjligheten att bli mer självständig. Även andra insatser,
såsom korttidsvistelse, i kombination med personlig assistans, kan främja
frigörelseprocessen.
Det andra problemområdet handlar om de barn som riskerar att fara illa
eller far illa. Barn med funktionsnedsättning är särskilt utsatta och kan ha
svårt att förmedla hur de egentligen har det. Socialstyrelsen konstaterar att
det finns barn som enbart har anhöriga som assistenter. Det finns också möjlighet
för vårdnadshavare att bli arbetsgivare för sitt barns assistenter och de
tillåts anställa personer i samma hushållsgemenskap. Insynen i de här barnens
levnadsförhållanden blir därmed begränsad och de kan bli isolerade från
samhället i övrigt. I praktiken sker ingen uppföljning av assistansens kvalitet.
För att öka möjligheterna till delaktighet, självständighet och utveckling
för barn och unga med personlig assistans anser Socialstyrelsen det angelä-
get:
• att kommuner i sina bedömningar tar hänsyn till att ungdomar som har
personlig assistans även bör få andra insatser som kan underlätta en frigö-
relseprocess
• att såväl privata som kommunala assistansanordnare ska beakta att ungdomar
som har anhöriga som assistenter även bör ha externa assistenter
• att se över lagändringen där egna arbetsgivare tillåts anställa anhöriga i
samma hushållsgemenskap när det gäller vårdnadshavare som driver sitt
barns assistans
• att man förtydligar hur ansvaret för uppföljningen av assistansens kvalitet
ska se ut

Barn med personlig assistans. Möjligheter till utveckling, självständighet och delaktighet

Socialstyrelsen (2014)

För de allra flesta barn och unga med funktionsnedsättning är personlig assistans en insats som fungerar bra och har inneburit en förbättrad livskvalitet. Med barnets bästa i fokus har dock Socialstyrelsen identifierat ett antal problem och risker i samband med att barn och unga beviljas personlig assistans.

Ett problemområde gäller hur unga med funktionsnedsättning ska kunna bli så självständiga som möjligt och hur deras frigörelseprocess kan underlättas. Det gäller i synnerhet när föräldrar i stor utsträckning är personliga assistenter åt sina barn. Socialstyrelsen menar att externa assistenter kan ha en positiv inverkan på möjligheten att bli mer självständig. Även andra insatser, såsom korttidsvistelse, i kombination med personlig assistans, kan främja frigörelseprocessen.

Det andra problemområdet handlar om de barn som riskerar att fara illa eller far illa. Barn med funktionsnedsättning är särskilt utsatta och kan ha svårt att förmedla hur de egentligen har det. Socialstyrelsen konstaterar att det finns barn som enbart har anhöriga som assistenter. Det finns också möjlighet för vårdnadshavare att bli arbetsgivare för sitt barns assistenter och de tillåts anställa personer i samma hushållsgemenskap. Insynen i de här barnens levnadsförhållanden blir därmed begränsad och de kan bli isolerade från samhället i övrigt. I praktiken sker ingen uppföljning av assistansens kvalitet.

För att öka möjligheterna till delaktighet, självständighet och utveckling för barn och unga med personlig assistans anser Socialstyrelsen det angeläget:

att kommuner i sina bedömningar tar hänsyn till att ungdomar som har personlig assistans även bör få andra insatser som kan underlätta en frigörelseprocess
att såväl privata som kommunala assistansanordnare ska beakta att ungdomar som har anhöriga som assistenter även bör ha externa assistenter
att se över lagändringen där egna arbetsgivare tillåts anställa anhöriga i samma hushållsgemenskap när det gäller vårdnadshavare som driver sitt barns assistans
att man förtydligar hur ansvaret för uppföljningen av assistansens kvalitet ska se ut

Barn med överlappande diagnoser

Martin L Kutscher, Tony Attwood, Robert R Wolff. (2016)

Barn med neuropsykiatriska funktionsnedsättningar har ofta flera olika diagnoser. I den användbara handboken Barn med överlappande diagnoser beskrivs de vanligaste diagnoserna och det mest centrala man bör känna till om orsaker, symtom och behandling. Med fokus på möjligheter till utveckling, delar Kutscher med sig av strategier och praktiska tips för att kunna hjälpa barn både hemma och i skolan.

Barn och andra anhöriga som översätter och medlar inom socialtjänst och hälso- och sjukvård

Socialstyrelsen (2018)

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Barn och andra anhöriga som översätter och medlar inom socialtjänst och hälso- och sjukvård

Socialstyrelsen (2018)

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Barn och andra anhöriga som översätter och medlar inom socialtjänst och hälso-och sjukvård

Socialstyrelsen (2018)

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag. Forskargruppen valde i samråd med Socialstyrelsen ut vilka verksamheter webbenkäten i kartläggningen skulle riktas till. Inom socialtjänsten valdes socialsekreterare och handläggare inom ekonomiskt bistånd respektive LSS. Inom hälso- och sjukvården valdes vårdpersonal inom primärvården. Enkäten har kompletterats med fokusgruppsintervjuer med personal inom primärvård, ekonomiskt bistånd och LSS. Resultaten visar att samtliga undersökta verksamheter använder minderåriga barn och andra anhöriga istället för tolk i vissa situationer. Främst sker det vid oplanerade besök. Det är vanligare att vuxna anhöriga används i stället för en utbildad tolk än minderåriga barn. I de fall då mötet med brukaren eller patienten beskrivs som känsligt eller komplicerat, ser personalen oftast till att tillkalla professionell tolk. Inom primärvården är det dock inte ovanligt att låta vuxna anhöriga översätta även vid planerade besök.

Barn och trauma

Dyregrov A (2010)

Barn i förskole- och skolåldern kan ha utsatts för traumatiska händelser, som t.ex. en närståendes död, misshandel eller sexuella övergrepp. Men barn kan även bli traumatiserade utan att själva vara direkt utsatta. Det kan ske t.ex. genom att barnen bevittnar svåra händelser. Om långvariga problem ska kunna förebyggas måste det finnas vuxna som ger barnen stöd för bearbetningen av det inträffade så att de kan bemöta, uttrycka och integrera de svåra händelserna i sina liv.

Caring capital websites

Anderson, R. E. (2012)

'Caring capital' is that subset of social capital characterized by caregiving, charity and compassion when these actions are given out of a concern for the welfare of others. The relationship between caring and various forms of capital has scarcely been noticed by social scientists, either theoretically or empirically. After reviewing the concepts of caring and capital, 77 websites related to caring capital were analyzed to explore these types of questions: How large, influential and effective is the care-oriented sector of the web? How is it best to categorize the diversity of websites promoting caring capital? What social or interactive and user-generated opportunities are offered by these web sites? What implications for the future do these web organizations have? While we cannot offer any definitive answer to the question of the potential of the Internet for facilitating caring capital, this study's glimpse of the web finds only minimal charitable activity compared to the huge need for greater compassionate caring at both individual and organizational levels.

Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Sutcliffe C., Giebel C., Bleijlevens M., Lethin C(4), Stolt M., Saks K., Soto ME., Meyer G., Zabalegui A., Chester H., Challis D., RightTimePlaceCare Consortium. (2017)

OBJECTIVES: To explore associations between carer burden and characteristics of
(1) the informal carer, (2) the person with dementia, and (3) the care support
network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. MEASUREMENTS: Variables regarding the informal carer included familial
relationship and living situation. Variables relating to the person with dementia
included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q),
depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity
Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The
care support network was measured using hours of caregiving (ADLs, instrumental
ADLs [IADLs], supervision), additional informal care support, and service receipt
(home care, day care). Experience of carer burden was recorded using the Zarit
Burden Interview. Logistic regression analysis was used to determine factors
associated with high carer burden. RESULTS: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with
characteristics of the informal carer (family relationship, specifically wives or
daughters), of the person with dementia (physical dependency in ADLs;
neuropsychiatric symptoms, in particular nighttime behaviors and irritability),
the care support network (hours of caregiving supervision; receipt of other
informal care support) and country of residence. CONCLUSION: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of
distressed behaviors and difficulties in ADLs by the person with dementia may be
addressed by specific nonpharmacological interventions focusing on both elements.
The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.

Caring for Elder Parents: A Comparative Evaluation of Family Leave Laws

Yang, Y. T. and G. Gimm (2013)

As the baby boomer generation ages, the need for laws to enhance quality of life for the elderly and meet the increasing demand for family caregivers will continue to grow. This paper reviews the national family leave laws of nine major OECD countries (Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Spain, and the United Kingdom) and provides a state-by-state analysis within the U.S. We find that the U.S. has the least generous family leave laws among the nine OECD countries. With the exception of two states (California and New Jersey), the U.S. federal Family Medical Leave Act of 1993 provides no right to paid family leave for eldercare. We survey the current evidence from the literature on how paid leave can impact family caregivers' employment and health outcomes, gender equality, and economic arguments for and against such laws. We argue that a generous and flexible family leave law, financed through social insurance, would not only be equitable, but also financially sustainable.

Caring for older people and employment. A review of literature prepared for the Audit Commission

Pickard, L. (2004)

This literature review is concerned with caring for older people and employment, with
a particular focus on the public sector. The review has been commissioned from the
Personal Social Services Research Unit (PSSRU) by the Audit Commission.
At the request of the Audit Commission, the emphasis of the review is on two main
questions. First, there is the question of the extent to which mainstream services and
employers take into account the particular circumstances and needs of carers of older
people in their provision of services or employment practices. Second, there is the
question of the effectiveness or cost-effectiveness of carer-friendly services and
employment practices. The Audit Commission asked the researcher to consider
effectiveness and cost-effectiveness from the perspectives of the different interest
groups involved, that is, the carer, the employer, the person being cared for and the
public interest. The focus of the review is primarily on the role of public sector
employers in offering carer-friendly employment policie

Caring situation and provision of Web based support for young persons who support family members or close friends with mental illness

Ali, L. (2013)

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support.

Caring situation and provision of web-based support for young persons who support family members or close friends with mental illness

Ali, L. (2013)

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support

Akad. avh.

Challenges and Recommendations for the Developments of Information and Communication Technology Solutions for Informal Caregivers

Alhassan Yosri, Ibrahim Hassan (2020)

Abstract
Background: Information and communication technology (ICT)-based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions.

Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges.

Methods: A scoping review methodology was used following the Arksey and O'Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions.

Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers.

Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders-including policy makers, health care professionals, informal caregivers, and care recipients-about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.

Challenges in conceptualizing social support

Vangelisti, L. Anita (2009)

Although research on social support has generated findings that are key to the study of social and personal relationships, scholars have yet to deal with a number of conceptual issues that affect how social support is defined and measured. Research on hurt feelings provides some interesting insights concerning the conceptualization of support. Based on this research, as well as a review of the literature on social support, the current article describes several issues that scholars ought to consider as they conceptualize, evaluate, and study social support processes.

Challenges of combining work and unpaid care, and solutions: A scoping review

Spann A, Vicente J, Allard C, Hawley M, Spreeuwenberg M, de Witte L (2019)

Abstract
The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O'Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discusse

Challenging Childhoods: Young people’s accounts of ‘getting by’ in families with substance use problems

Backett-Milburn, K., Wilson, S., Bancroft. A., & Cunningham-Burley, S. (2008)

Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped them to 'get by' in their challenging childhoods, showing how the protective factors thought to promote 'resilience' were seldom in place for them unconditionally and without associated costs.

Characteristics of Drug-Abusing Women With Children in Residential Treatment: A Preliminary Evaluation of Program Retention and Treatment Completion.

Simons L. (2008)

An ex post facto study was conducted to investigate treatment outcomes for 80 women and 168 children admitted into a residential substance-abuse treatment program. The results indicated childhood emotional neglect is a barrier for remaining in and completing treatment for African-American women with comorbid psychological disorders but not for those with crack cocaine dependent disorders. African-American women with comorbid psychological disorders were also three times more likely to dropout of treatment. In addition, there were relatively few differences for between drug-exposed and nonexposed children. However, the results indicated that children of substance-abusing women who completed treatment were more likely to have behavioral problems, to receive early intervention services, and to have mothers as legal guardians by the end of treatment. Implications for gender-specific interventions for African-American women and their children in residential treatment are discussed.

Child physical abuse and concurrence of other types of child abuse in Sweden – Associations with health and risk behaviors

Annerbäck, E.M., Sahlqvist, L., Svedin, C.G., Wingren, G., & Gustafsson, P.A. (2012)

Abstract
OBJECTIVE:
To examine the associations between child physical abuse executed by a parent or caretaker and self-rated health problems/risk-taking behaviors among teenagers. Further to evaluate concurrence of other types of abuse and how these alone and in addition to child physical abuse were associated with bad health status and risk-taking behaviors.
METHODS:
A population-based survey was carried out in 2008 among all the pupils in 2 different grades (15 respectively 17 years old) in Södermanland County, Sweden (n=7,262). The response rate was 81.8%. The pupils were asked among other things about their exposure to child physical abuse, exposure to parental intimate violence, bullying, and exposure to being forced to engage in sexual acts. Adjusted analyses were conducted to estimate associations between exposure and ill-health/risk-taking behaviors.
RESULTS:
Child physical abuse was associated with poor health and risk-taking behaviors with adjusted odds ratios (OR) ranging from 1.6 to 6.2. The associations were stronger when the pupils reported repeated abuse with OR ranging from 2.0 to 13.2. Also experiencing parental intimate partner violence, bullying and being forced to engage in sexual acts was associated with poor health and risk-taking behaviors with the same graded relationship to repeated abuse. Finally there was a cumulative effect of multiple abuse in the form of being exposed to child physical abuse plus other types of abuse and the associations increased with the number of concurrent abuse.
CONCLUSIONS:
This study provides strong indications that child abuse is a serious public health problem based on the clear links seen between abuse and poor health and behavioral problems. Consistent with other studies showing a graded relationship between experiences of abuse and poor health/risk-taking behaviors our study shows poorer outcomes for repeated and multiple abuse. Thus, our study calls for improvement of methods of comprehensive assessments, interventions and treatment in all settings where professionals meet young people.

Child politics. Dimensions and perspectives

Therborn, G. (1996)

The article analyses the different strands of public concern regarding children in the course of the 20th century, and the political process and the ideological constellation which led up to the UN Convention on the Rights of the Child. The ratification of the Convention and its political effects in northwestern Europe are analysed. Finally, a set of hypotheses are presented about likely determinants of the impact of the Convention in different parts of the world.

Child witnesses to domestic violence: A meta-analytic review

Kitzmann, K. M., Gaylord, N. K., Holt, A. R., & Kenny, E. D. (2003)

This meta-analysis examined 118 studies of the psychosocial outcomes of children exposed to interparental violence. Correlational studies showed a significant association between exposure and child problems (d = -0.29). Group comparison studies showed that witnesses had significantly worse outcomes relative to nonwitnesses (d = -0.40) and children from verbally aggressive homes (d = -0.28). but witnesses' outcomes were not significantly different from those of physically abused children (d = 0.15) or physically abused witnesses (d = 0.13). Several methodological variables moderated these results. Similar effects were found across a range of outcomes, with slight evidence for greater risk among preschoolers. Recommendations for future research are made, taking into account practical and theoretical issues in this area.

Childhood bereavement and peer support: epidemiology, identification of evaluation constructs, and the promotion of resilience

Hulsey, E.G. (2009)

Akad. Avh.

The death of a close family member is a profound insult to a child's developmental course. Though early research assumed that childhood bereavement was a risk factor for mental and behavioral disorders in childhood and adult life, recent research has taken an ecological view of childhood development and considers a child's exposures to risk and protective factors. Yet, it remains unclear as to how many children are affected by the death of a close family member each year and how peer support groups can help children to adapt to such an adverse event. This dissertation represents three distinct stages in the development of a comprehensive evaluation for an agency that provides a peer support service for bereaved children and their families. First, a primary question that arose during initial consultations with the agency was to determine how many children are affected annually within Pennsylvania. This led to an exploration of the epidemiology of childhood bereavement. The methods and data sources used to produce these estimates were critically evaluated and modified to offer a new interpretation of available data. Second, it was important to identify constructs that could be used in an outcomes evaluation of the peer support program. Focus groups were used to explore the perceived benefits of attending peer support groups among caregivers and teens who had attended a spring session at the center. The intention to use focus groups was to increase the validity of constructs and, ultimately, the results of an outcomes evaluation.Third, after identifying evaluation constructs a feasibility study was conducted to pilot an outcomes evaluation instrument. The study involved 30 families who attended the spring 2007 sessions at the center. Results suggested that peer support programs can improve children's coping efficacy while helping to improve their caregivers' perception of social support. The program also improved both children and caregivers' sense that they are not alone in their grief.As demonstrated in this dissertation, including the loss of siblings and primary caregiving grandparents in prevalence estimates of childhood bereavement and applying resilience theory to peer support research is of public health relevance.

Childhood bereavement services: issues in UK service provision

Rolls, L. & Payne, S. (2004)

This paper outlines the broad key findings from a research project on UK childhood bereavement service provision, using eight organizational case studies. Despite a shared objective of 'helping bereaved children' services were very diverse. Three organizational types were identified with differing management and administrative structures, each of which had different implications for staff. Although the overall size and employment status (paid or unpaid) of the respective workforces varied, the number of staff who worked directly with children or their families was similar. Direct and indirect services were offered within a matrix of provision that focussed either on children or on families, and involved individual and/or group work activities. Obtaining sufficient funding presented services with immense challenges. Unless they were part of a larger 'host' organization with a continued commitment to childhood bereavement service provision, services were unable to rely on regular and long-term sources of funding. This can have a detrimental impact on the core business, and on the ability of the service to develop their provision. Improving and increasing research, audit and evaluation of childhood bereavement services would contribute to supporting the case for both individual services and for the childhood bereavement sector as a whole.

Childhood bereavement: psychopathology in the 2 years postparental death

Cerel, J., Fristad, M.A., Verducci, J., Weller, R.A. & Weller, E.B. (2006)

Abstract
OBJECTIVE:
Although the death of a parent is one of the most significant stressors a child can experience, the psychiatric sequelae of parental death are not fully understood.
METHOD:
A total of 360 parent-bereaved children (ages 6-17) and their surviving parents were directly interviewed four times during the first 2 years following the death (at 2, 6, 13, and 25 months). Data collection occurred from 1989 to 1996. Psychiatric symptomatology was compared among the bereaved children, 110 depressed children, and 128 community control children and their informant parents. Additional analyses examined simple bereavement without other stressors versus complex bereavement with other stressors and anticipated versus unanticipated death.
RESULTS:
Bereavement following parental death is associated with increased psychiatric problems in the first 2 years after death. Bereaved children are, however, less impaired than children diagnosed with clinical depression. Higher family socioeconomic status and lower surviving parents' level of depressive symptoms are associated with better outcomes. Complex bereavement was associated with a worse course, but anticipation of the death was not.
CONCLUSIONS:
Childhood bereavement from parental death is a significant stressor. Children who experience depression in combination with parental depression or in the context of other family stressors are at the most risk of depression and overall psychopathology.

Children as ‘Being and Becomings’: Children, Childhood and Temporality

Uprichard, E. (2008)

Notions of 'being' and 'becoming' are intrinsic to childhood research. Whilst the 'being' child is seen as a social actor actively constructing 'childhood', the 'becoming' child is seen as an 'adult in the making', lacking competencies of the 'adult' that he or she will 'become'. However, I argue that both approaches are in themselves problematic. Instead, theorising children as 'being and becomings' not only addresses the temporality of childhood that children themselves voice, but presents a conceptually realistic construction suitable to both childhood researchers and practitioners.

Children caring for parents with mental illness: perspectives of young carers, parents and professionals

Aldridge, Jo & Becker, Saul (2003)

Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them. Children caring for parents with mental illness makes an invaluable contribution to the growing evidence base on parental mental illness and outcomes for children. It:·[vbTab]is the first research-based text to examine the experiences and needs of children caring for parents with severe mental illness;·[vbTab]provides the perspectives of children, parents and key professionals in contact with these families;·[vbTab]reviews existing medical, social, child protection and young carers literatures on parental mental illness and consequences for children; ·[vbTab]provides a chronology and guide to relevant law and policy affecting young carers and parents with severe mental illness;·[vbTab]makes concrete recommendations and suggestions for improving policy and professional practice;·[vbTab]contributes to the growing evidence base on parental mental illness and outcomes for children and families.

Children exposed to domestic violence and child abuse: Terminology and taxonomy

Holden, G. W. (2003)

Three definitional issues regarding children exposed to domestic violence are examined. First, the multiple ways in which a child can be exposed to violence is discussed. A taxonomy of 10 types of exposure is proposed. Nine key characteristics of domestic violence, as they relate to children and children's exposure, are then outlined. The third issue addressed concerns why children who are exposed to domestic violence can be considered victims of child maltreatment. These children, by nature of their experience in the home, are psychologically maltreated and are also at high risk for physical abuse and some risk for sexual abuse. Empirical questions concerning these definitions and taxonomies and their interrelations are discussed.

Children in precarious environments and life situations

Brodin, J. (2011)

This article is based on a project studying children growing up in precarious environments and life situations in Sweden. Data have emerged from the explorative study "Children in precarious life situations". Regardless of Sweden's long tradition in the social welfare field many children have difficulties and do not feel mentally well. The aim of this article is to increase the knowledge of children in precarious environments and life sitations and to explore the existence of exposed arenas where many children spend their everyday lives.

Children in residential and foster care – a Swedish example

Andersson, Gunvor (1999)

The article reports on a longitudinal study of children placed in a children's home in Malmö, Sweden, at the beginning of the 1980s. The 26 children, placed when younger than four years of age and staying more than four weeks in the children's home, were followed up three and nine months after leaving the children's home as well as five, ten and fifteen years later. Interviewing the parties concerned was the predominant research method. Twenty of the 26 children in the research group also had later experiences of out-of-home care, including foster care, in addition to the stay at the children's home. This article is about them, 15–20 years old when interviewed in the latest follow-up study. Three aspects of "outcome" are focused on: the degree of stability in the children's living conditions; relationships to parents and foster parents; well-being and emotional and behavior problems. Bearing in mind that the concept of well-being is relative, a cautious conclusion is that a third of the children in the study experienced well-being, a third felt "o.k.," and a third had serious problems, including criminal activities and drugs. The somewhat unclear connection between well-being, stability in living conditions, and sense of family belonging is discussed.

Children living with Home Mechanical Ventilation: The everyday life experiences of the children, their siblings, parents and personal care assistants.

Israelsson-Skogsberg, Åsa (2019)

Dissertation

Aim: The overall aim of this thesis was to explore the everyday life experiences of living with Home Mechanical Ventilation (HMV) from the perspective of the children and their siblings, parents and personal care assistants. Methods: Study I describes the experiences of personal care assistants (PCA) working with a ventilator-assisted person at home, based on qualitative content analysis according to Elo and Kyngäs (2008), of 15 semi-structured interviews. Study II, using qualitative content analysis according to Graneheim and Lundman (2004), focuses on exploring everyday life experiences from the perspective of children and young people on HMV, by means of interviews with nine children and young people receiving HMV. Study III, using a phenomenological hermeneutical method, illuminates the everyday life experiences of siblings of children on HMV, based on ten interviews. Study IV explores HRQoL, family functioning and sleep in parents of children on HMV, based on self-reported questionnaires completed by 85 parents. Results: PCAs working with a person with HMV experienced a complex work situation entailing a multidimensional responsibility. They badly wanted more education, support, and an organisation of their daily work that functioned properly. Children with HMV had the feeling that they were no longer sick, which included having plans and dreams of a future life chosen by themselves. However, at the same time, there were stories of an extraordinary fragility associated with sensitivity to bacteria, battery charges and power outages. The siblings' stories mirror a duality: being mature, empathetic, and knowledgeable while simultaneously being worried, having concerns, taking a lot of responsibility, being forced to grow up fast, and having limited time and space with one's parents. Parents of children with HMV reported low HRQoL and family functioning in comparison with earlier research addressing parents of children with long-term conditions. One in four parents reported moderate or severe insomnia. Conclusion: Children receiving HMV may feel that they are fit and living an ordinary life, just like their healthy peers. At the same time the results of this thesis indicate that everyday life in the context of HMV is a fragile construct that in some respects resembles walking a tightrope. The fragility of the construct also affects the everyday lives of the families and the PCAs. Ort, förlag, år, upplaga, sidor Borås: Högskolan i Borås, 2019.SerieSkrifter från Högskolan i Borås, ISSN 0280-381X ; 101 Nyckelord [en] Home Mechanical Ventilation, children, siblings, parents, family, personal care assistants, health, family functioning, everyday life

Children of affectively ill parents: a review of the past 10 years

Beardslee W, Versage E, Gladstone T. (1998)

OBJECTIVE: To review the literature investigating the effects of parental affective illness on children over the past decade. METHOD: A computerized search of articles published over the past 10 years was completed. Articles were reviewed and relevant studies are presented. RESULTS: Over the course of the past 10 years a number of longitudinal studies have confirmed that children of affectively ill parents are at a greater risk for psychiatric disorders than children from homes with non-ill parents. Life table estimates indicate that by the age of 20 a child with an affectively ill parent has a 40% chance of experiencing an episode of major depression. Children from homes with affectively ill parents are more likely to exhibit general difficulties in functioning, increased guilt, and interpersonal difficulties as well as problems with attachment. Marital difficulties, parenting problems, and chronicity and severity of parental affective illness have been associated with the increased rates of disorder observed in these children. CONCLUSION: The presence of depression in parents should alert clinicians to the fact that their children also may be depressed and therefore in need of services

Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program

Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al. (2008)

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program

Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al. (2008)

OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.

Children of Depressed Mothers 1 Year After the Initiation of Maternal Treatment: Findings From the STAR*D-Child Study

Pilowsky D, Wickramaratne P, Talati A, Tang M, Hughes C, Garber J, et al. (2008)

Objective: Maternal depression is a consistent and well-replicated risk factor for child psychopathology. The authors examined the changes in psychiatric symptoms and global functioning in children of depressed women 1 year following the initiation of treatment for maternal major depressive disorder. Method: Participants were 1) 151 women with maternal major depression who were enrolled in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study and 2) their eligible offspring who, along with the mother, participated in the child STAR*D (STAR*D-Child) study (mother-child pairs: N=151). The STAR*D study was a multisite study designed to determine the comparative effectiveness and acceptability of various treatment options for adult outpatients with nonpsychotic major depressive disorder. The STAR*D-Child study examined children of depressed women at baseline and involved periodic follow-ups for 1 year after the initiation of treatment for maternal major depressive disorder to ascertain the following data: 1) whether changes in children's psychiatric symptoms were associated with changes in the severity of maternal depression and 2) whether outcomes differed among the offspring of women who did and did not remit (mother-child pairs with follow-up data: N=123). Children's psychiatric symptoms in the STAR*D-Child study were assessed using the Schedule for Affective Disorders and Schizophrenia for School-Age Children—Present and Lifetime Version (K-SADS-PL), and maternal depression severity in the STAR*D study was assessed by an independent clinician, using the 17-item Hamilton Depression Rating Scale (HAM-D). Results: During the year following the initiation of treatment, maternal depression severity and children's psychiatric symptoms continued to decrease over time. Decreases in the number of children's psychiatric symptoms were significantly associated with decreases in maternal depression severity. When children's outcomes were examined separately, a statistically significant decrease in symptoms was evident in the offspring of women who remitted early (i.e., within the first 3 months after the initiation of treatment for maternal depression) or late (i.e., over the 1-year follow-up interval) but not in the offspring of nonremitting women. Conclusions: Continued efforts to treat maternal depression until remission is achieved are associated with decreased psychiatric symptoms and improved functioning in the offspring.

Children of Mothers with Intellectual Disability: Stigma, Mother-Child Relationship and Self-esteem

Perkins, TS., Holburn, S., Deaux, K., Flory, MJ., & Vietze. PM. (2002)

Background  We investigated mother–child relationships and self-esteem of typical children of mothers with intellectual disability.

Methods  Eighteen girls and 18 boys from various ethnic groups were administered questionnaires to assess: (a) attachment style; (b) caregiver style; (c) perception of maternal stigma; and (d) self-esteem. The children were also asked to list the identities or roles that they play in life.

Results  Results suggested that: (a) the relationship between the child's perception of stigma and attachment to the mother is mediated by the warmth of the mother's caregiving style; and (b) if the child has an avoidant or anxious/ambivalent attachment to the mother, self-esteem tends to be lower. Furthermore, multiple identities contribute to positive self-esteem among these children.

Conclusions  Results are discussed in relation to the model presented and the consistency of the findings with attachment theory.

Children of Mothers with Serious Substance Abuse Problems: An Accumulation of Risks.

Conners NA, Bradley RH, Mansell LW, Liu JY, Roberts TJ, Burgdorf K, et al. (2003)

This study examines the life circumstances and experiences of 4084 children affected by maternal addiction to alcohol or other drugs. The paper will address the characteristics of their caregivers, the multiple risk factors faced by these children, their health and development, and their school performance. Data were collected from mothers at intake into 50 publicly funded residential substance abuse treatment programs for pregnant and parenting women. Findings from this study suggest that children whose mothers abuse alcohol or other drugs confront a high level of risk and are at increased vulnerability for physical, academic, and social-emotional problems. Children affected by maternal addiction are in need of long-term supportive services.

Children of parents with intellectual disability: Facing poor outcomes or faring okay?

Collings, S., & Llewellyn, G. (2012)

Background Children of parents with intellectual disability are assumed to be at risk of poor outcomes but a comprehensive review of the literature has not previously been undertaken.
Method A database and reference search from March 2010 to March 2011 resulted in 26 studies for review.
Results Two groups of studies were identified. The first investigated an association between parental intellectual disability and child outcomes where there was significant disadvantage. Some findings suggest low parental intellectual capacity can negatively impact child outcomes, but others indicate child development approaches population norms. A second, small group of studies explored narrative accounts of childhood to find that social exclusion, bullying, and stigma are commonplace. Removal from parental care emerged as a significant risk for this group of children.
Conclusions Studies focusing on child development represent 85% of the literature but reach no consensus about likely developmental or behavioural outcomes. Children studied usually come from clinical populations or other high-risk groups, and are typically young children.

Children with medical complexity: an emerging population for clinical and research initiatives

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. B., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011)

Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.

Children´s perceptions of parental multiple sclerosis

Cross, T., & Rintell, D. (1999)

Semi-structured interviews were conducted with 7-to-14-year-old children of parents with multiple sclerosis (MS; N = 21) to examine children's perceptions of MS, and a content analysis was conducted. Children observed visible and 'invisible' symptoms and affective distress. Few children had information about the physiological process of MS. The most frequent categories of causal beliefs were fate or chance, contagion and congenital/hereditary factors. Many children mentioned their own or other people's behaviour as influences on the course of MS. No children believed that parents' MS would get worse. Children need developmentally appropriate information, reassurance about their effect on parents and their own risk of contracting MS, and discussion of the stress on the family. The study suggests the value of psycho-educational intervention for many families with MS.

Children’s adjustment to parental death

Tremblay, G.C. & Israel, A.C. (1998)

Keywords:
parental death;childhood grieving;bereavement intervention
This article reviews the evidence regarding the effects of parental death on children's acute and long-term psychological adjustment, as well as the clinical literature describing interventions for bereaved families. The risk of adjustment difficulties for bereaved children has shown no consistent relation to complications of grieving, but is instead largely accounted for by an increased probability of inadequate care following the loss of a parent. The literature describing interventions for bereaved families offers little formal evaluation, and reflects our incomplete understanding of children's grief responses, and thus of appropriate treatment goals. Further research should focus on more molecular analysis of grief processes, including grief-related interactions between children and parents, and should take into account developmental variation in children's needs and experiences. The use of multiple informants of child and parent behavior is strongly recommended, and the unique contributions of longitudinal research in understanding children's adjustment to loss are highlighted.

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