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Review and selection of online resources for carers of frail adults or older people in five European countries: a mixed-methods study

Papa, R, Efthymious, A, Lamura, G, Piccinini, F, Onorati, G, Papastavrou, E, Tsitsi, T, Casu, G, Boccaletti, L, Manattini, A, Seneca, R, Vaz de Carvalho, C, Durão, R, Barbabella, F, Andréasson, F, Magnusson, L, Hanson, E (2020)

ABSTRACT
Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.

Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).

Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.

Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.

Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

Spousal care-giving arrangements in Europe. The role of gender, socio-economic status and the welfare state

Ariane Bertogg, Susanne Strauss (2020)

Abstract
Spouses (and partners) are the most important source of care in old age. Informal care for frail spouses is provided by both sexes and across all socio-economic backgrounds and welfare policy contexts. There are, however, interesting differences as to whether spouses care alone, receive informal support from other family members or formal support from professional helpers, or outsource the care of their spouse completely. The present article contributes to the literature by differentiating between solo spousal care-giving and shared or outsourced care-giving arrangements, as well as between formal and informal care support. Moreover, we show how care-giving arrangements vary with gender, socio-economic status and welfare policy. Adding to previous research, we compare 17 countries and their expenditures on two elder-care schemes: Cash-for-Care and Care-in-Kind. The empirical analyses draw on the most recent wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) data from 2015. Our results show that men have a higher propensity to share care-giving than women, albeit only with informal supporters. As expected, welfare policy plays a role insofar as higher expenditure on Cash-for-Care schemes encourage informally outsourced care-giving arrangements, whereas Care-in-Kind reduce the likelihood for informally shared or outsourced care-giving arrangements. Moreover, the influence of these welfare policy measures differs between individuals of different socio-economic status but not between men and women.

Statistik om boendeinsatser och anhörigstöd 2019

Socialstyrelsen (2020)

Efter en längre tids ökning av antalet personer som har fått boendeinsatser
av socialtjänsten så har det skett en stabilisering de senaste åren. Befolkningsmässigt större kommuner gav fler insatser per capita, jämfört med
mindre.

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].

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.

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.

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.

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.

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.

"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.

“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.

”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.

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 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 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 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 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.

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.

Alcohol use and stress in university freshmen: a comparative intervention study of two universities

Andersson, C. (2009)

doktorsavhandling

Starting university is associated with major academic, personal and social opportunities. For many people, university entrance is also associated with increased stress and alcohol consumption. At the start of the autumn term 2002, all students entering educational programmes at two comparable middle-sized Swedish universities were invited to participate in a comparative intervention study. This included both primary and secondary interventions targeting hazardous drinking and stress. The overall aim was to improve alcohol habits and stress patterns in university freshmen at an intervention university in comparison with a control university.

A total of 2,032 (72%) freshmen responded to the baseline assessment. Half of them scored above traditional AUDIT cut-off levels for hazardous alcohol use. Factors associated with hazardous use were age below 26, male gender, family history of alcohol problems, and not being in a serious relationship. The Arnetz and Hasson Stress Questionnaire was evaluated and used to study a selection of freshmen at high riskof stress. It was easy to use and offered sufficient internal consistency and construct validity. In the freshman year, 517 students (25%) dropped out from university education. A multivariate analysis established that high stress and university setting was associated with dropout from university studies, while symptoms of depression and anxiety as well as hazardous drinking were not.

Outcome was analysed in students remaining at university at one-year follow-up. The primary interventions offered to freshmen at the intervention university reduced alcohol expectancies and mental symptoms compared with freshmen at the control university. Secondary stress interventions were effective in reducing mental symptoms and alcohol expectancies. Secondary alcohol interventions were effective in reducing AUDIT scores, alcohol expectancies, estimated blood alcohol concentrations, as well as stress and mental symptoms.

In conclusion, both primary and secondary alcohol and stress interventions have one-year effects in university freshmen and could be used in university settings.

Alternativ och Kompletterande kommunikation (AKK) i teori och praktik.

Heister-Trygg, B. and I. Andersson (2009)

Boken är skriven för personer som i sin yrkesverksamhet ansvarar för området AKK, t ex logopeder, arbetsterapeuter och pedagoger, och för både grundutbildning och vidareutbildning.
Huvudförfattarena för denna reviderade upplaga är logopeder och driver sedan många år Södra regionens kommunikationscentrum, SÖK, och har mångårig erfarenhet av AKK-området bland såväl barn som vuxna.
Ur innehållet: Teorier kring tal, språk och kommunikation, alternativa och kompletterande kommunikationssätt, omgivningsfaktorer, metodik, etik, olika funktionsnedsättningar m m. Genom boken får vi följa ett antal personer i varierande ålder och med olika svårigheter och de ställningstagande som görs för att dessa ska få bästa möjliga förutsättningar att kunna kommunicera.

Anhörigas delaktighet i psykiatrin – resultat från EUNOMIA-projektet

Wadefjord, Anna, Gustavsson, Marita, Stenmarck, Mats & Kjellin, Lars (2009)

Tidigare forskning har visat att psykiska sjukdomar har stor inverkan inte bara på de personer som drabbas utan även på deras anhöriga, och att många anhöriga inte upplever sig vara tillräckligt delaktiga i den psykiatriska vården. Få skillnader i dessa avseenden har funnits mellan anhöriga till frivilligt vårdade och anhöriga till tvångsvårdade patienter. Denna rapport redovisar några resultat från en anhörigstudie som genomförts under perioden augusti 2004 till februari 2006 i Örebro län som en del i en större EU-finansierad europeisk studie av psykiatrisk tvångsvård, det så kallade EUNOMIA-projektet.

Syftet med Örebro-delen av EUNOMIA-projektets anhörigstudie var att undersöka hur anhöriga till frivilligt vårdade och tvångsvårdade patienter uppfattar orsak till intagning, förekomst av tvång vid intagning, bemötande av och hjälp till patienten under vården, bemö-tande av anhöriga, anhörigas delaktighet i vården samt patientens prognos.

Fyrtiofyra anhöriga till personer som intagits i psykiatrisk slutenvård i Örebro län, och som inkluderats i EUNOMIA-projektets patientstudie, tillfrågades om deltagande. Av dessa tackade 36 personer (82 %) ja till deltagande i studien, varav 25 kvinnor och 11 män. De som intervjuades var mammor, pappor, vuxna barn, syskon, make, maka eller partner, andra släktingar och närstående av annat slag. Tjugotvå av de intervjuade var närstående till frivilligt vårdade och 14 anhöriga till tvångsvårdade patienter.

Anhörigintervjun genomfördes inom fyra veckor från det att patienten skrevs in på psykiatrisk vårdavdelning. Frågorna handlade om den anhöriges relation till patienten, uppfattning om patientens möjlighet att återfå sin psykiska hälsa, bedömning av graden av tvång vid intagning, uppfattning om varför patienten blev intagen, vårdtillfredsställelse, samt om bemötande och delaktighet i och dialog med den psykiatriska vården.

Den enligt de anhöriga vanligast förekommande orsaken till att patienten blev intagen var att det förelåg allvarlig fara för eller hot mot patientens hälsa samt att patienten var oförmögen att ta hand om sig själv. Bedömningarna av vilken grad av tvång patienterna upplevde vid intagningen visade på samstämmighet mellan patienter och anhöriga. Däremot var det en större andel bland de svarande närstående än bland patienterna som ansåg att patientens behandlare eller kontaktperson förstod patienten och var engagerad i patientens behandling och vård, att patienten blev respekterad och väl behandlad på avdelningen, samt att behandlingen och vården varit till hjälp för patienten. Många anhöriga kunde tänka sig ett tvångsomhändertagande i det fall patienten skulle få samma problem igen och inte skulle vilja läggas in frivilligt.

Över 80 procent av de närstående kände sig "som vanligt", likvärdiga eller respekterade i sina kontakter med psykiatrin. Nästan 40 procent uppgav att de inte kände sig tillräckligt delaktiga i patientens vård och behandling. De som hade haft kontakt med psykiatrin under det senaste året kände sig bättre bemötta och mer delaktiga i patientens inläggning, vård och behandling än de som inte hade haft någon kontakt. Över hälften upplevde inte att de haft någon dialog med personal från psykiatrin. Svaren uttrycker stor variation med både stark kritik mot och stor tillfredsställelse med kontakterna med psykiatrin, liksom att inte alla an-höriga vill ha någon omfattande sådan kontakt.

En stor del av de närstående uttryckte optimism beträffande patientens prognos. Många trodde att deras sjuke son, dotter, förälder, make, maka, sambo, partner, släkting eller vän helt eller delvis skulle återfå sin psykiska hälsa, framför allt bland anhöriga till patienter som inte varit sjuka sedan så lång tid tillbaka.

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.

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.

Att vara syskon till ett barn eller ungdom med cancersjukdom – tankar, behov, problem och stöd

Nolbris, M. (2009)

Doktorsavhandling

The overall aim was to describe the siblings' thoughts on and experiences of needs, problems and supports when their brother or sister is being treated or undergoing follow-ups for or has died of cancer. The thesis uses a life-world perspective with open interviews (Papers I-IV). It describes the siblings' needs and issues when a brother or sister dies of cancer n=10 (Paper I), and it develops an understanding of the everyday experiences of siblings with a brother or sister who is receiving or has completed treatment for a cancer disease n=10 (Paper II). The thesis looks at the siblings' thoughts on their experiences of being a sibling of a brother or sister during his or her treatment or who has been treated for or has died from cancer n=20 (Paper III). The thesis also describes the siblings' experiences of being involved in a therapeutic support group when the family had or had had a child with cancer n=15 (Paper IV). The methods used to analyse the interview texts were qualitative content analysis (I, III, IV) and phenomenological hermeneutic analysis (II). The findings show that the sibling relationships strengthened. The siblings lacked support and felt they were not being given information. There was underlying anxiety and loneliness. There was a new consideration in their daily life with the sick brother or sister constantly at the centre. It was very important that the family felt well. Thoughts about death were not allowed and they tried to repress them. Anticipatory grief started already with the diagnosis. The grief when a brother or sister dies varies over time and in how it manifests itself, and there are short breaks. Therapeutic support groups with tools such as pictures and paintings validated the siblings' feelings and gave them support regardless of their age and sex. The results demonstrate a need to preserve the sibling's health. Consideration and respect for all family members may lessen suffering. Regular and appropriate information about the disease, treatment and the patient's condition is needed, as well as the offer of therapeutic support, individually or in groups.

Attitudes toward decision making and aging, and preparation for future care needs

Fowler, C., & Fisher, C. L. (2009)

Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.

Attitudes toward decision making and aging, and preparation for future care needs.

Fowler, C., & Fisher, C. L. (2009)

Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.

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.

Barndomen varar i generationer. Om förebyggande arbete med utsatta familjer. Andra upplagan

Killén, Kari (2009)

Barndomen varar inte bara livet ut. Den varar i generationer. Det är viktigt att stärka föräldraskapet och ge föräldrar hjälp innan de får problem. Barn som inte får hjälp att bearbeta smärtsamma upplevelser kan komma att omedvetet vidareförmedla dessa till sina egna barn. Denna bok handlar om att förebygga nästa generations omsorgssvikt och psykiska störningar.
Barndomen varar i generationer baserar sig på en referensram där anknytningsteori och anknytningsforskning är centrala inslag. Kari Killén är både kliniker, pedagog och forskare, och i denna bok knyter hon ihop teori och praktik för att förebygga problem i föräldra-barnrelationer. Denna andra upplaga är uppdaterad och bearbetad med avseende på den forskning och erfarenhet som tillkommit sedan förra upplagan från år 2000.
Boken vänder sig till alla som arbetar med barn och ungdomar i skola, hälso- och sjukvård och inom socialtjänsten, samt till studenter inom dessa områden.

Barnperspektiv i LSS-handläggningen

Socialstyrelsen (2009)

Under 2008/2009 gjorde Socialstyrelsen en förstudie för att ta reda på vilka problem och möjligheter som finns kring att se till barns och ungdomars behov i utredningssammanhang utifrån lagen om stöd och service till vissa funktionshindrade, LSS. De övergripande frågeställningarna var:
Hur utreder LSS-handläggarna idag barns och ungdomars behov av insatser, och hur följs dessa insatser upp?
Vad skulle handläggarna behöva för typ av utredningsstöd för att bättre kunna bedöma barns och ungdomars behov?
Förstudien genomfördes i Jönköpings län, genom enskilda intervjuer, en webbenkät samt fokusgruppssamtal med LSS-handläggare.
Det visade sig att handläggarna inte hade något särskilt utformat stöd för att få in barnperspektiv i sina utredningar. Barns behov bedömdes på olika sätt mellan handläggare inom och mellan olika kommuner. Resultaten av enkät och intervjuer visar att det fanns ett önskemål om att öka likvärdigheten kring handläggningen i olika kommuner och därmed öka rättsäkerheten. För detta krävs en struktur som betonar barnperspektiv och som gör att LSS-handläggare får ett mer likartat arbetssätt.
I fokusgrupperna presenterades två olika modeller för att ringa in behovsområden i utredningsförfarandet, Barns behov i centrum (BBIC) respektive International Classification of Functioning, Disability and health – for Children and Youth Version, (ICF-CY) Handläggarna fick sedan diskutera vad som kunde vara användbart i deras arbete.
Resultatet av fokusgrupperna visar att handläggarna ansåg att de kunde inspireras av det barnfokus som finns inbyggt i BBIC samt av modellens processtruktur. BBIC saknar dock innehåll om hur en funktionsnedsättning ger upphov till funktionshinder och hur insatsen kan underlätta för individen att fungera i sin vardag.
När det gällde ICF så uppfattade handläggarna ICF-CY som relativt svårtillgänglig i sin struktur och de hade svårt att se hur de skulle kunna använda klassifikationen i praktiken. Handläggarna tyckte att begreppen i ICF-CY kändes bekanta då innehållet i klassifikationen handlade om funktionshinder, vardagligt fungerande och delaktighet. Handläggarna kände igen sitt eget synsätt i ICF-CY eftersom ICF-CY utgår från individer som möter funktionshinder utifrån sitt vardagsfungerande, och inte ser till social problematik eller går in djupt på föräldraförmåga. Handläggarna uppfattade att angreppssättet av funktionsprofil var tilltalande då det öppnar för ett annat sätt att tänka om funktionsnedsättningar och diagnoser.

Bygga och använda språk : Bliss i AKK

Heister Trygg, Boel (2009)

Boken presenterar blissanvändare i olika åldrar och på olika språkliga nivåer. Den vill ge inspiration att prova blisspråket också där det inte är alldeles givet. Författaren försöker bland annat att ge svar på frågor som: Varför bliss? Hur ser blisspråket ut? Hur väljer man symboler och bygger upp en blisstavla?

Caregiver -- Who Copes How?

Chappell, N. L., & Dujela, C. (2009)

Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies and change in coping strategy over a 1-year period. In particular the differential importance of caregiver capacity (such as social support, health, and personality) compared with careload (such as hours of caregiving and need of the care recipient) is examined within a path model. Data came from a purposive sample of caregivers experiencing heavy demands. Overall, problem-focused coping is used more often than emotion-focused coping (either positive or negative) or seeking social support, but caregivers use all types simultaneously. Caregiver capacity, specifically neuroticism, is the strongest predictor of problem-focused coping with those high in neuroticism less likely to use this strategy. High neuroticism also predicts less use overall and negative emotion-focused coping strategies. Few significant predictors emerge of change; those that did were caregiver capacity, not careload variables. The use of all coping strategies, except seeking social support which remained stable, decreased over a 1-year period.

Caregiving and volunteering among older people in Sweden - prevalences and profiles

Jegermalm, M., & Jeppsson Grassman, E. (2009)

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens.

Caregiving and Volunteering among Older People in Sweden − Prevalence and Profiles

Jegermalm, M. and E. Jeppsson Grassman (2009)

This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens

I taket lyser stjärnorna

Johanna Thydell, Manus och regi Linn Gottfridsson och Lisa Siwe (2009)

Jenna går i sjuan och borde egentligen bara behöva oroa sig över brösten som aldrig växer, varför hon inte är lika populär som Ullis-"knullis" och hur hon ska få Sakke att bli kär i henne eller åtminstone upptäcka att hon finns. När Jennas mamma drabbas av cancer är de tvungna att flytta hem till mormor, som dessutom bor granne med Ullis. Ullis bor med sin alkoholiserade mamma, och mellan flickorna växer det fram en vänskap. Detta är en film om något av det svåraste som finns; att förlora någon man älskar till döden. Men det är också en film om vänskap, identitet och faktiskt om överlevnad.

Iconicity in the development of picture skills: typical development and implications for individuals with severe intellectual disabilities

Stephenson, J. (2009)

The iconicity of graphic symbols and the iconicity hypothesis are theoretical concepts that have had an impact on the use of augmentative and alternative communication strategies for people with severe intellectual disabilities. This article reviews some of the recent literature on the impact of iconicity on symbol recognition and use by typically developing children and relates those findings to people with severe disability. It seems that although iconicity may have some impact on symbol learning, there are other variables that are likely to be much more important. It is likely that iconicity is not helpful to those learning graphic symbols who have little or no comprehension of spoken language.

Impacts of family support in early childhood intervention research

Friend, A. C., J. A. Summers, et al. (2009)

The purpose of this paper is to review intervention research to determine the types of family support that are reported and evaluated in early childhood. This review includes 26 articles evaluating (a) parent training programs; (b) general family-centered practice models which offer comprehensive supports; (c) peer support; (d) two-generation programs; and (e) respite care. In the article, we focus our discussion on: (a) the definitions or description of family support, (b) the family variables or impacts evaluated and their findings, and (c) the link between support and impacts to both the ECO outcomes and the family quality of life domains. This review indicates a need for specific and consistent terminology in defining family support in the early intervention field. Further, a family support framework to guide future research to investigate both long-term and short-term outcomes for families is warranted. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Inledning till: 2008 Standards for bereavement Care in the UK, Nationella riktlinjer/standarder för sörjandestöd i Storbritannien och Nordirland. Översättning: Grimby, A. Johansson, Å K.

Grimby, A., & Johansson, Å. K. (2009)

De nationella, grundläggande riktlinjerna för sörjandestöd i U.K.
Behovet
Förlust av en nära anhörig är oftast den mest förödande upplevelsen i ens liv. Även om
tillvaron aldrig mer blir sig lik, finner de flesta ett sätt att anpassa sig till förlusten. Det är
normalt och naturligt att sörja. För vissa människor blir det emellertid alltför svårt eller
traumatiskt utan extra stöd.
Vid sådana tillfällen, när människor är som mest sårbara, kan organisationer med
välutvecklat och utbildat sörjandestöd erbjuda en rad lämpliga och professionella
stödformer. För första gången i U.K. finns nu en uppsättning riksomfattande, godkända
riktlinjer eller normer som garanterar att detta stöd är tryggt, lämpligt och etiskt.
Riktlinjerna och Principerna
Riktlinjerna för sörjandestöd (The Bereavement Care Standards) i detta dokument är
under ständig bearbetning. De är generellt formulerade och inte några föreskrifter. De
behöver anpassas till individuella behov och omständigheter samt tillgång till lokala
stödmöjligheter. Nyckeln till användningen av riktlinjerna utgörs av etiska principer (The
set of Ethical Principles) som kan användas universellt, oavsett om stödet är riktat till en
enskild individ eller en grupp. Dessa principer hjälper till att ange kvaliteten på det
sörjandestöd som erbjuds.
Riktlinjerna och Principerna avser att:
• Ge ett nationellt erkännande för det ovärderliga stöd som tillhandahålls av redan
befintliga sörjandestödsgrupper.
• Stärka förtroendet bland användare och finansiärer genom att sörjandestödet
arbetar efter en nationell standard.
Riktlinjer för sörjandestödet från "UK Council" (Rådet i U.K.)
Denna organisation upprättades för att föra arbetet med Riktlinjerna framåt. Riktlinjerna
är inte huggna i sten för att gälla för all framtid; därför kommer Rådet att svara för att de
ständigt revideras i takt med att nya erfarenheter görs.
Medlemskap i Rådet kommer från
• de fyra organisationerna i "The National Bereavement Consortium"
• enskilda och serviceorganisationer från hela U.K.
• personer med uttalat intresse för sörjandestöd i U.K.
En viktig utgångspunkt är att alla medlemmar i Rådet skriver under på de etiska
principerna.

Insatser till barn och unga som lever i familjer med missbruks- eller beroendeproblem: en kunskapsöversikt

Rehnman, Jenny & Andrée Löfholm, Cecilia (2009)

Resultatet visar att det för närvarande inte finns något tillförlitligt underlag för insatser till barn och unga med föräldrar som har missbruksproblem. När det gäller insatser till barn och unga med föräldrar som har någon psykisk funktionsnedsättning saknas också vetenskapligt stöd för att uttala sig om hur effektiva insatserna är. Det finns dock en utvärdering som bedöms ha medelgod tillförlitlighet, och den gäller insatsen Beardslees familjeintervention som är riktad till familjer där någon av föräldrarna har en depression. Utvärderingen av Beardslees familjeintervention visade att insatsen inte var mer effektiv än den föreläsningsinsats som den jämfördes med.

Effekterna av familjeinterventionen eller föreläsningsinsatsen har emellertid inte satts i relation till en icke-insats (placebo eller väntelista) eller någon annan insats som kan antas vara standardbehandling, och därför går det för närvarade inte att uttala sig om insatsens effektivitet.

Resultatet från översikten ska inte tolkas som att det inte finns några insatser som är verksamma och som kan ge stöd till barn och unga som lever i familjer med missbruksproblem eller med förälder som har en psykisk funktionsnedsättning. Problemet är att det i dagsläget inte går att värdera om de insatser som förekommer har en positiv effekt. Därför behövs både svenska utvärderingar och lokala uppföljningar av de befintliga insatserna genomföras.

Kategorisering av barn i förskoleåldern – styrning och administrativa processer

Lutz, Kristian (2009)

The present thesis investigates, analyses and critically discusses the manner in which children with special needs are categorised in the Swedish preschool. The emergence of the category and its construction depends on a number of truths concerning children, related to historical and cultural processes in society. A main focus of the thesis is to investigate how legitimacy is established for the practice of defining deviance among preschoolers, and analyse the knowledge and rationalities that prevail in discursive practice. As part of this, the ways of defining children with special needs as a group are clarified, as well as the administrative procedures for handling their cases throughout the organisation. The study combines two strands within discourse analysis: classical discourse analysis with origins in Foucaults work and critical disourse analysis (CDA). The concept governmentality was used to make an analytical matrix, adapted to prescool practices. Data has been collected in a disadvantaged district belonging to the conurbation of a Swedish major city. Empirical material includes recording of an administrative meeting, application documents, interviews and national policy documents. The study shows that the categorisation have different effects and functions in different contexts. Implemental perspective: The practice of development evaluation of preschoolers has increased the written documentation, often based on techniques originating in compulsory school. These techniques are frequently ill adapted to the curriculum of the Swedish preschool, which emphasise the competent child and clearly encourages the child's agency in preschool activities. Evaluation techniques also play the role of an incentive driving towards increasing individualisation. Educators tend to distance themselves from generalising concepts, and often assume a relational standpoint to defining deviance in children, but adapt to techniques that require a more individually based practice, which places the problems with the child. When parents consent to submit application documents, power is transformed to a range of professional actors, and a client-expert relationship is established. Administrative perspective: On the management level, the child primarily is subject to an economical rationality, and is expected to fit into existing preschool activities. The empirical material of this thesis does not display the inclusive perspective which occupies such a prominent position in special education discussions concerning compulsory school. The administrative conversation observed in the study was characterised by a quantitative approach, concerning resources for children who are considered deviant. Discussions at the meeting did not concern any aspect of the quality of the support offered, and the relationship between children and educators was reduced to a number of resouce hours per child. Societal (professional) perspectives: In an analysis of how resources for children with special needs are allocated in the city district, results will depend on which type of knowledge and rationalities are judged to be legitimate. Children who received a diagnosis delivered by a physician, or who are in the course of being investigated at the habilitation centre, obtain the largest support measures. A pattern supported by national policy documents, who constitute a steering mechanism towards implementation in educational establishments. Development evaluations in preschool can be seen as a step in Foucaults term psycomplex , where psychology is manifested in the institutions dealing with preschool children and their activities. The close historical link between pedagogy and developmental psychology, combined with a general development in society towards giving the individual perspective a central position, may contribute to the dominance of psychiatric assesments in explaining deviance among preschoolers. - See more at: http://www.skolporten.se/forskning/avhandling/kategoriseringar-av-barn-i-forskolealdern-styrning-administrativa-processer/#sthash.qpaeHiJ3.dpuf

Kort-tids-boende. En kameleont i äldreomsorgen

Westlund, Peter (2009)

Ett kort-tids-boende är förbundet med föreställningen att behoven inte bara är omfattande, utan också övergående och kortvariga. Så är det i princip. I realiteten tycks många korttidsvistelser handla om att man inte vet hur det förhåller sig med behoven – om de är övergående eller inte. Av den anledningen tenderar korttidsboendet att vara både en väntplats och en vändplats. En plats för väntan, såväl aktivt som passivt, på att flytta till särskilt boende och en plats varifrån den enskilde vänder hemåt igen – en vändplats.

Ett korttidsboende har således många och skiftande funktioner och kan se ut lite hur som helst. Det kan vara alltifrån insprängda platser till relativt smalt specialiserade enheter, därav benämningen kameleont.

Kvinnors och mäns återhämtning från psykisk ohälsa

Schön, Ulla-Karin (2009)

Rapport i Socialt arbete 130. Doktorsavhandling

The overall aim with this thesis is to describe and analyze women's and men's recovery processes. More specifically, the aim is to determine what women and men with experience of mental illness describe as contributing to the personal recovery process. The point of departure for the studies was 30 in-depth interviews conducted with 15 men and 15 women. The selection of interview subjects was limited to individuals who had been treated in 24-hour psychiatric care and diagnosed as having schizophrenia, psychosis, a personality disorder, or a bipolar disorder.

Four studies have been carried. Study 1 was a baseline article that examined what people in recovery from mental illness outline as facilitating factors to their recovery. The results that emerged from that study indicated areas for further analysis to condense the understanding of the recovery process. In study 2 the similarities and the differences in recovery described by women and men were examined. In Study 3 women's and men's meaning-making with reference to severe mental illness facilitate the recovery process were studied. The forth study explored how peer-support contribute to women's and men's recovery from mental illness.

The results emphasize recovery from mental illness as a social process in which relationships play a key role in creating new identities beside the mental illness. For a majority of the participants meeting peers facilitated the recovery process. The participants described how peer support meant an end to isolation and became an arena for identification, connection, and being important to others. Throughout these recovery processes the impact of gender has been emphasized. The results from this thesis provide new insight into gender as an important factor in understanding the recovery processes. The results from the four studies emphasize the mental patient, the psychiatric interventions and the individual recovery strategies as being influenced by gender constructions.

Lenas mamma får en depression

Alphonce Elisabet (2009)

text och illustrationer: Elisabet Alphonce

barn/ungdom

En berättelse om hur en förälder kan vara när hon drabbats av depression.

Litet syskon: Om att vara liten och ha en syster eller bror med sjukdom eller funktionsnedsättning

Renlund, Christina (2009)

I boken Litet syskon - om att vara liten och ha en syster eller bror med sjukdom eller funktionsnedsättning är det barnen själva som berättar, det är deras röster vi hör. Barnen är mellan två och sex år och har syskon med autism, cancer, cystisk fibros, epilepsi, hjärtfel, muskelsjukdom, rörelsehinder, synskada och utvecklingsstörning.

I boken visar Christina Renlund många sätt som barn kan uttrycka sig på, många konkreta verktyg som är användbara för att hjälpa barn att berätta. Och barn behöver prata - i första hand i sin familj men det behöver även finnas konkreta arbetssätt för hur man pratar med barn om sjukdom/funktionsnedsättning inom förskola och vård.

Christina Renlund är leg. psykolog och psykoterapeut med mångårig erfarenhet av arbete med barn och unga med kronisk sjukdom/funktionsnedsättning och deras familjer. Hon har tidigare skrivit boken Doktorn kunde inte riktigt laga mig - barn om sjukdom och funktionshinder och om hur vi kan hjälpa.

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

Hedman Ahlström, B. (2009)

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

Measurement of time processing ability and daily time management in children with disabilities

Janeslätt G, Granlund M. (2009)

Background

Improvement is needed in methods for planning and evaluating interventions designed to facilitate daily time management for children with intellectual disability, Asperger syndrome, or other developmental disorders.

Objectives

The aim of this study was to empirically investigate the hypothesized relation between children's time processing ability (TPA), daily time management, and self-rated autonomy. Such a relationship between daily time management and TPA may support the idea that TPA is important for daily time management and that children with difficulties in TPA might benefit from intervention aimed at improving daily time management.

Methods

Participants were children aged 6 to 11 years with dysfunctions such as attention-deficit/hyperactivity disorder, autism, or physical or intellectual disabilities (N = 118). TPA was measured with the instrument KaTid. All data were transformed to interval measures using applications of Rasch models and then further analysed with correlation and regression analysis.

Results

The results demonstrate a moderate significant relation between the parents' ratings of daily time management and TPA of the children, and between the self-rating of autonomy and TPA. There was also a significant relation between self-ratings of autonomy and the parents' rating of the children's daily time management. Parents' ratings of their children's daily time management explain 25% of the variation in TPA, age of the children explains 22%, while the child's self-rating of autonomy can explain 9% of the variation in TPA. The three variables together explain 38% of the variation in TPA. The results indicate the viability of the instrument for assessing TPA also in children with disabilities and that the ability measured by KaTid is relevant for daily time management.

Conclusions

TPA seems to be a factor for children's daily time management that needs to be taken into consideration when planning and evaluating interventions designed to facilitate everyday functioning for children with cognitive impairments. The findings add to the increasing knowledge base about children with time processing difficulties and contribute to better methods aimed at improving these children's daily time management. Further research is needed to examine if there are differences in TPA related to specific diagnosis or other child characteristics.

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

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

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

Migration och Folkhälsa. Kapitel 9 i ”Folkhälsorapport”.

Hjern A. (2009)

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

Min stroke

Taylor Bolte, Jill (2009)

På morgonen den 10 december 1996 förändrades Jill Bolte Taylors liv totalt. Den 37-åriga hjärnforskaren drabbades av en kraftig stroke då ett blodkärl brast i vänstra halvan av hjärnan. Inom loppet av några timmar försvann förmågan att tala, läsa, skriva, gå och hennes minne var i det närmaste helt utraderat.

Tiden som följde blev en berg- och dalbana mellan två verkligheter: den euforiska känslan från höger hjärnhalva som styr känslor och kreativitet, och de logiska rationella tankarna från vänstra halvan som talade om för Jill att hon var sjuk och fick henne att söka hjälp i tid.

Det tog åtta år för Jill Bolte Taylor att tillfriskna helt och hållet. Tack vare en otrolig envishet, sin kunskap om hur den mänskliga hjärnan fungerar och inte minst med stor hjälp av sin fantastiska mamma lyckades hon få tillbaka det liv hon en gång hade. Idag anser Jill att stroken var det bästa som kunde hända henne. Genom att tvingas använda sin högra hjärnhalva insåg hon att vi människor kan tillgodogöra oss de känslor av frid och välbehag som den vänstra halvan gör sitt bästa för att trycka ner.

Min stroke tar läsaren med på en fascinerande resa in i den mänskliga hjärnan. Det är både en värdefull hjälp för alla som drabbats av någon form av hjärnskada och ett känslosamt vittnesmål om att djup inre frid är möjligt att uppnå för alla människor, vid alla tillfällen. Boken har i flera veckor legat på topp 10 på New York Times bästsäljarlista för faktaböcker.

Negotiating needs : processing older persons as home care recipients in gerontological social work practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs : processing older persons as home care recipients in gerontological social work practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices

Olaison, A. (2009)

The study concerns the needs assessment processes that older persons undergo to gain access to home care. The participation of older persons, their relatives and municipal care managers was studied from a communicative perspective. The assessment meetings functions as formal problem-solving events. The older persons´ accounts are negotiated discursively in interaction. Various storylines are used by the older persons and their relatives whether they view home care as an intrusion, as a complement or as a right. In case of divergent opinions the older person has the final say as prescribed by the Swedish social service act. One conclusion is that the role of relatives is not defined and a family perspective is not present. In the study the institutional structure of the assessment process was also analyzed. Older persons are processed into clients; their needs are fitted within the framework of documentation and institutional categories. In the transfer of talk to text all the particulars are not reflected and two types of documentation was identified; a fact-oriented objective language or an event-oriented personal language. Care management models and a managerialist thinking has influenced the assessment process by bureaucratisation of older people trough people processing, which is in contradiction to the individual-centric perspective prescribed by the law. The introduction of care management models in gerontological social work has lead to an embedded contradiction and constitutes a welfare political dilemma. Improved communicative methods are needed in order to achieve a holistic assessment situation.

Negotiating needs. Processing Older Persons as Home Care Recipients in Gerontological Social Work Practices.

Olaison, A. (2009)

Studien tar sin utgångspunkt i de bedömningsprocesser äldre personer genomgår för att få tillgång till hjälp i hemmet. Bedömningsprocessen där äldre, deras anhö-riga och kommunala behovsbedömare deltog studerades ur ett kommunikativt perspektiv. Interaktionen vid behovsbedömningssamtalet fungerar som en pro-blemlösningsprocess. Den äldre personens redogörelse för behov förhandlas diskursivt i interaktionen och tre olika berättelselinjer identifierades, baserade på om de sökande betraktar hemtjänsten som ett intrång, som ett komplement och stöd eller som en rättighet. När olika åsikter uttrycks har de äldre sista ordet i enlighet med Socialtjänstlagens föreskrifter. En slutsats är att de anhörigas roll i behovsbedömningsprocessen inte är definierad och att ett familjeperspektiv sak-nas. I studien analyserades också bedömningsprocessens institutionella struktur. De äldre behovssökande processas till att bli klienter, deras behov anpassas till dokumentationens ramverk och kategoriseras i enlighet med institutionella kate-gorier. I transfereringen av tal till text redovisas inte samtliga element i samtalet. Två typer av utredningstext identifierades, den faktaorienterade och den händelse-orienterade. I studien diskuteras det marknadsekonomiska tänkande som kommit att påverka bedömningsprocessen genom byråkratisering vilket står i motsatsställ-ning till det individcentrerade perspektiv som lagen förespråkar. Introduktionen av marknadsmodeller i det gerontologiska sociala arbetet har medfört en inbyggd motsättning och utgör ett välfärdspolitiskt dilemma. Förbättrade kommunikativa metoder behövs för att uppnå en holistisk bedömningsprocess.

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

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

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

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

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

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

Patterns of informal help- and caregiving in Sweden: a 13-year perspective

Jegermalm, M., & Jeppsson Grassman, E. (2009)

This article analyses informal help and caregiving in Sweden with a focus on the scope and trends of change over time. The discussion is based on the results of three national surveys and of one surveyconducted in the county of Stockholm. The results indicated that informal help and caregiving was common throughout the period under study. In the

s, the figures were fairly stable, while fromthe late

s to

there seems to have been a dramatic increase in the prevalence of such support. Two interpretative perspectives are used to discuss this pattern. One locates its point of departure in recent welfare state changes and in the substitution argument, according to which cuts in welfare services put more pressure on people to provide informal help and care. The second perspective relates to the present debate on civil society and to its possible role in contemporarysociety. According to the civil society perspective, an increase in the prevalence of informal help and caregiving might be interpreted as an expression of growing civic involvement 'in its own right',without a straightforward and simple relationship to changes in the welfare state. It is argued in the article that the two frames of interpretation should not be viewed as mutually exclusive, but rather that they represent two partly complementary approaches to the understanding of the complex dynamics of unpaid work in contemporary Swedish society.

People with dementia and their family carers' satisfaction with a memory service: A qualitative evaluation generating quality Indicators for dementia care.

Willis, R., Chan, J., Murray. J., Matthews, D. & Banerjee, S. (2009)

Background: UK health policy requires the early identification and management of dementia. There are few good quality evaluations of models of care in dementia with a particular lack of data from user and carer perspectives. The Croydon Memory Service Model (CMSM) was developed to identify and treat people in the early stages of dementia and its evaluation includes an assessment of service satisfaction. Aim: To complete a qualitative investigation into the satisfaction with the service of those assessed and treated using the CMSM. Method: The CMSM was the subject of a multi-method evaluation, as part of this, semi-structured qualitative interviews were carried out with 16 people with dementia and 15 family carers to establish their opinions of the service. Purposive sampling was used to identify participants with a range of diagnosis, ethnicity, and age. Conventional Content Analysis was used to analyse the data. Results: Six themes concerning satisfaction emerged from the data: initial experience of dementia; service experience; helpful interventions; normalizing the catastrophic; clear communication; and gaps in service. Peer support and clear communication were seen as valuable assets provided by the service, allowing participants to use coping strategies which normalized having dementia. Conclusions: From these data we can derive seven quality indicators with which to judge services for people with dementia: (i) provision of broad-based care as well as assessment; (ii) clear communication about diagnosis and care; (iii) continuing peer support groups; (iv) easy availability of staff; (v) professional staff behaviour; (vi) the service working for people with young-onset dementia and their carers; (vii) strategies to manage those with subjective memory impairment but no objective deficits.

Perceptions of the relationship between mental health professionals and family caregivers: has there been any change?

Nicholls, E. and R. Pernice (2009)

A number of international studies have highlighted family caregivers' (FCGs') dissatisfaction with their relationship with mental health professionals (MHPs) when providing care for mentally ill family members. However, few studies have explored the mental health professionals' perspective of this relationship. This study explored both FCGs' and MHPs' perspectives. Semi-structured interviews were conducted with seven FCGs and seven MHPs from two different geographical areas of New Zealand. Thematic analysis of these interviews revealed four distinct MHP themes and five FCG themes. The themes illuminate incongruence between MHPs' intentions to form a positive working relationship with families and the FCGs' mainly negative experiences of this relationship

Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies

May PA, Gossage JP, Kalberg WO, Robinson LK, Buckley D, Manning M, Hoyme HE. (2009)

Researching the epidemiology and estimating the prevalence of fetal alcohol syndrome (FAS) and other fetal alcohol spectrum disorders (FASD) for mainstream populations anywhere in the world has presented a challenge to researchers. Three major approaches have been used in the past: surveillance and record review systems, clinic-based studies, and active case ascertainment methods. The literature on each of these methods is reviewed citing the strengths, weaknesses, prevalence results, and other practical considerations for each method. Previous conclusions about the prevalence of FAS and total FASD in the United States (US) population are summarized. Active approaches which provide clinical outreach, recruitment, and diagnostic services in specific populations have been demonstrated to produce the highest prevalence estimates. We then describe and review studies utilizing in-school screening and diagnosis, a special type of active case ascertainment. Selected results from a number of in-school studies in South Africa, Italy, and the US are highlighted. The particular focus of the review is on the nature of the data produced from in-school methods and the specific prevalence rates of FAS and total FASD which have emanated from them. We conclude that FAS and other FASD are more prevalent in school populations, and therefore the general population, than previously estimated. We believe that the prevalence of FAS in typical, mixed-racial, and mixed-socioeconomic populations of the US is at least 2 to 7 per 1,000. Regarding all levels of FASD, we estimate that the current prevalence of FASD in populations of younger school children may be as high as 2-5% in the US and some Western European countries.

Prevalence of parental mental illness in Australian families

Maybery, D.J., Reupert, A., Patrick, K., Goodyear, M., & Crase, L. (2009)

AIMS AND METHOD

To provide multiple estimates of the numbers of Australian and Victorian families and children living in families where a parent has had a mental illness. We used the Australian Bureau of Statistics Victorian Mental Health Branch service usage and data collected from 701 community participants to triangulate prevalence information.

RESULTS

According to population estimates, 23.3% of all children in Australia have a parent with a non-substance mental illness, 20.4% of mental health service users have dependent children and 14.4% of the community study participants report having at least one parent with a mental illness.

CLINICAL IMPLICATIONS

The multiple prevalence estimates of the numbers of children in families with parental mental illness provide fundamental information for psychiatric policy, planning and programming.

Preventing Mental, Emotional and Behaviour Disorders Among Young People. Progress and Possibilities

National Research Council and Institute of Medicin. (2009)

This report builds on a highly valued predecessor, the 1994 Institute of Medicine (IOM) report entitled Reducing Risks for Mental Disorders: Frontiers for Preventive Intervention Research. That report provided the basis for understanding prevention science, elucidating its then-existing research base, and contemplating where it should go in the future. This report documents that an increasing number of mental, emotional, and behavioral problems in young people are in fact preventable. The proverbial ounce of prevention will indeed be worth a pound of cure: effectively applying the evidence-based prevention interventions at hand could potentially save billions of dollars in associated costs by avoiding or tempering these disorders in many individuals. Furthermore, devoting significantly greater resources to research on even more effective prevention and promotion efforts, and then reliably implementing the findings of such research, could substantially diminish the human and economic toll.

Preventing Mental, Emotional, and Behavioral Disorders Among Young People : Progress and Possibilities

Warner KE, Boat TF, O'Connell ME, National Research C. (2009)

Mental health and substance use disorders among children, youth, and young adults are major threats to the health and well-being of younger populations which often carryover into adulthood. The costs of treatment for mental health and addictive disorders, which create an enormous burden on the affected individuals, their families, and society, have stimulated increasing interest in prevention practices that can impede the onset or reduce the severity of the disorders.

Prevention practices have emerged in a variety of settings, including programs for selected at-risk populations (such as children and youth in the child welfare system), school-based interventions, interventions in primary care settings, and community services designed to address a broad array of mental health needs and populations.

Preventing Mental, Emotional, and Behavioral Disorders Among Young People updates a 1994 Institute of Medicine book, Reducing Risks for Mental Disorders, focusing special attention on the research base and program experience with younger populations that have emerged since that time.

Researchers, such as those involved in prevention science, mental health, education, substance abuse, juvenile justice, health, child and youth development, as well as policy makers involved in state and local mental health, substance abuse, welfare, education, and justice will depend on this updated information on the status of research and suggested directions for the field of mental health and prevention of disorders.

Regular article: Alcoholics Anonymous attendance following 12-step treatment participation as a link between alcohol-dependent fathers' treatment involvement and their children's externalizing problems

Andreas JB, O'Farrell TJ. (2009)

We investigated longitudinal associations between alcohol-dependent fathers' 12-step treatment involvement and their children's internalizing and externalizing problems (N = 125, M(age) = 9.8 +/- 3.1), testing the hypotheses that fathers' greater treatment involvement would benefit later child behavior and that this effect would be mediated by fathers' posttreatment behaviors. The initial association was established between fathers' treatment involvement and children's externalizing problems only, whereas Structural Equation Modeling (SEM) results supported mediating hypotheses. Fathers' greater treatment involvement predicted children's lower externalizing problems 12 months later, and fathers' posttreatment behaviors mediated this association: Greater treatment involvement predicted greater posttreatment Alcoholics Anonymous attendance, which in turn predicted greater abstinence. Finally, fathers' abstinence was associated with lower externalizing problems in children. Theoretical and practical implications of these findings are discussed.

Regular article: Alcoholics Anonymous attendance following 12-step treatment participation as a link between alcohol-dependent fathers' treatment involvement and their children's externalizing problems.

Andreas JB, O'Farrell TJ. (2009)

We investigated longitudinal associations between alcoholic fathers' 12-step treatment involvement and their children's internalizing and externalizing problems (N=125, Mage=9.8±3.1), testing the hypotheses that fathers' greater treatment involvement would benefit later child behavior, and that this effect would be mediated by fathers' post-treatment behaviors. The initial association was established between fathers' treatment involvement and children's externalizing problems only, while structural equation (SEM) results supported mediating hypotheses. Fathers' greater treatment involvement predicted children's lower externalizing problems 12 months later, and fathers' post-treatment behaviors mediated this association: greater treatment involvement predicted greater post-treatment Alcoholics Anonymous (AA) attendance, which in turn predicted greater abstinence. Finally, fathers' abstinence was associated with lower externalizing problems in children. Theoretical and practical implications of these findings are discussed.

Keywords: Children of alcoholics (COA), alcoholism treatment, Alcoholics Anonymous (AA), Structural Equation Modeling (SEM)

Research-based instructions to increase communication skills for students with severe disabilities

Pinto P, Simpson C, Bakken JP. (2009)

Communication skills are of great importance for children with developmental disabilities to be functional and independent in their own lives. This paper provides results of a comprehensive literature review on current researched-based intervention strategies that appear effective to increase communication skills for students who have severe disabilities. Researchers typically have combined intervention strategies and the actual effectiveness of isolated procedures is less clear. This review is aimed at investigating these isolated procedures and attempts to link research and practice in the area of communication.

Samordnad tillsyn av vård och omsorg

Socialstyrelsen (2009)

I maj 2009 beslutade riksdagen att samordna tillsynen av vård och
omsorg i en och samma myndighet. Beslutet innebär att ansvaret för
tillsynen av socialtjänsten förs över från länsstyrelserna till Socialstyrelsen,
som redan är nationell tillsynsmyndighet för hälso- och
sjukvården.
Med en samordnad tillsyn skapas förutsättningar för en enhetlig och
förutsägbar tillsyn, som bättre möter framtida utmaningar där vård
och omsorg blir alltmer involverade i varandra. En samordnad tillsyn
ska också underlätta för allmänheten att hitta rätt när de vill framföra
klagomål och anmäla brister.
Den 1 januari 2010 tar Socialstyrelsen över ansvaret för
• tillsynen av socialtjänstens äldreomsorg, omsorger om personer
med funktionsnedsättning, individ- och familjeomsorg samt
enskild verksamhet enligt socialtjänstlagen (SoL) och lagen om
stöd och service till vissa funktionshindrade (LSS)
• tillsynen av kommunernas verkställighet av beslut och domar
• ansökan om sanktionsavgift
• tillståndsgivning till enskilda verksamheter enligt SoL och LSS
• rådgivning.
Länsstyrelserna kommer att ha fortsatt ansvar för alkohol- och
tobakstillsyn och förebyggande insatser mot alkohol, tobak och
droger. Länsstyrelserna ska också samordna kvinnofridsfrågor och
fördela statsbidrag som rör kvinnofridsfrågor, personliga ombud och
alkohol- och drogförebyggande arbete.

Siri går på kalas

Annette Segerberg (2009)

Boken "Siri går på kalas" är skriven av en mamma Annette, bildkonstnär som har epilepsi. Idén till boken fick hon när hennes dotter ställde frågan vad som händer när Annette får anfall. Anette skriver "Som förälder behöver man ibland hjälp att förklara sin och även andras epilepsi för barnen". Boken är en bliderbok och passar barn från ca 3 år till 12 år.

Skolans metoder för att förebygga psykisk ohälsa hos barn – en nationell inventering i grundskolor och gymnasieskolor

Socialstyrelsen (2009)

Skolan kan ha en viktig roll för att främja psykisk hälsa bland barn och unga och för att tecken på psykisk ohälsa bland eleverna upptäcks tidigt. Hur dessa möjligheter ska tas till vara är en viktig fråga i det fortsatta preventiva arbetet. Ytterst handlar det om skolans förutsättningar att förmedla kunskap. En hälsofrämjande och förebyggande verksamhet som är väl utformad kan förändra hela skolans klimat och förbättra skolans möjligheter att klara sitt kärnuppdrag

UPP-centrum genomförde i början av år 2008 en enkätundersökning i ett urval grund- och gymnasieskolor för att få en uppfattning om vilka program och strukturerade arbetssätt som dessa använder för att upptäcka och åtgärda tidiga tecken på psykisk ohälsa. Undersökningen ingick i ett större uppdrag från regeringen att inventera metoder som används för att förebygga psykisk ohälsa hos barn.

Enkäten bestod i huvudsak av frågor inom följande områden:

Vilka program/strukturerade arbetssätt man använder i skolan för tidig upptäckt av barn som riskerar att utveckla psykisk ohälsa?
Vilka metoder/strukturerade arbetssätt man använder i skolan för att åtgärda/stödja barn som riskerar att utveckla psykisk ohälsa?
Deltar skolan i någon form av samverkan och i så fall med vem/vilka?
Vilka behov finns det av kunskapsstöd och rekommendationer?
Resultaten måste tolkas med försiktighet eftersom svarsfrekvensen bara uppgick till 58 procent, men de tyder ändå på att skolorna använder en relativt stor mängd program och strukturerade arbetssätt med ett universellt preventivt syfte i sitt arbete med att motverka mobbning och normbrytande beteende. Inte minst har många skolor utarbetat egna sådana program och strukturerade arbetssätt. Drygt hälften av skolorna hade utvärderat de program och arbetssätt som de använder. Även när det gäller föräldrastöd och föräldrasamverkan har många skolor utarbetat egna program och strukturerade arbetssätt, men många använder också etablerade program och arbetssätt. En tredjedel av de svarande skolorna använde inget program eller strukturerat arbetssätt för föräldrastöd och föräldrasamverkan. Bland dem som använde sådana program och arbetssätt hade omkring hälften utvärderat det.

En stor majoritet av skolorna uppgav att det finns nedskrivna rutiner eller handlingsplaner för hur man ska gå till väga när någon ur personalen tidigt upptäcker elever som visar tecken på psykisk ohälsa. Det var också en tydlig majoritet av de svarande skolorna som sade att de samverkar med andra verksamheter utanför skolan i syfte att upptäcka, förebygga eller åtgärda psykisk eller psykosocial ohälsa. Vanligast var samverkan med socialtjänsten och barn- och ungdomspsykiatrin, men även polisen var en vanlig samverkanspart. Färre skolor sade att de har samverkansavtal med andra verksamheter, och ännu färre att de hade dokumenterat och utvärderat samverkan.

Områden som skolorna nämnde som viktiga för kunskapsstöd var om barn och unga i olika riskmiljöer, funktionsnedsättning/diagnoser samt olika program för tidig upptäckt samt för stöd och behandling. Skolorna tillfrågades också om behovet av allmänna råd eller rekommendationer för att välja program eller arbetssätt i arbetet att upptäcka, åtgärda och förebygga psykisk ohälsa och i så fall inom vilka områden. Även om de flesta efterfrågar allmänna råd och rekommendationer i allmänhet pekar en del av svaren på att vissa områden är mer angelägna än andra. Det gäller bl.a. depressioner, självskadebeteende, ätstörningar, mobbning samt föräldrastöd och föräldrasamverkan.

Sammanfattningsvis leder resultaten till tre centrala slutsatser inför det fortsatta arbetet med skolans roll och insatser för elever med psykisk ohälsa:

Skolans uppdrag och roll behöver förtydligas i förhållande till arbetet med att förebygga psykisk ohälsa hos barn och unga. Ingen annan verksamhet har så breda och långvariga kontakter med barn och unga som skolan. Skolans arbete för elevernas personliga utveckling kan, direkt och indirekt, påverka deras psykiska hälsa. Det kan öka möjligheterna att tidigt upptäcka tecken på psykisk ohälsa och att ge rätt stöd åt barn och unga med tecken på psykisk ohälsa. Det finns också ett tydligt samband mellan skolans kunskapsmål och psykisk hälsa.
Det behövs fortsatta studier av de program och strukturerade arbetssätt som skolan använder för att tidigt upptäcka tecken på ohälsa bland elever och om de program och arbetssätt som används för att ge elever med tecken på psykisk ohälsa stöd. Dessutom behövs fördjupade analyser av vad andra program och arbetssätt, som används i t.ex. arbetet mot mobbning, kan betyda för möjligheterna att förebygga psykisk ohälsa hos barn.
Skolan behöver bättre tillgång till kunskaper om barns psykiska hälsa och om hur de kan arbeta med att upptäcka tidiga tecken på psykisk ohälsa och själva eller i samverkan med andra ge elever med tecken på psykisk ohälsa rätt stöd.

The inter-relationship between formal and informalcare: a study of France and Israel

Litwin, H. and C. Attias-Donfut (2009)

This study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.

The Mood Disorder Burden Index: A scale for assessing the burden of caregivers to adults with unipolar or bipolar disorder

Martire, L. M., Hinrichsen, G. A., Morse, J. Q., Reynolds, C. F., Gildengers, A. G., Mulsant, B. H., . . . Kupfer, D. J. (2009)

We present a brief measure of caregiver burden, the Mood Disorder Burden Index (MDBI), for use with family members and close friends of adults with major depressive disorder (MDD) or bipolar disorder (BD). The MDBI assesses burden in three core domains (patients' mood symptoms, caregivers' worry about the future, and caregivers' interpersonal difficulties with the patient) and includes an optional module that assesses caregiver burden associated with patients' pharmacotherapy or psychotherapy. The MDBI was administered to caregivers of older individuals (i.e., 58 years and older) with MDD (n=123) or BD (n=38) who were receiving treatment through a research study. Analyses indicated evidence of convergent and discriminant validity of the new measure well as internal consistency within both caregiver groups. It will be important for future research to administer the MDBI to caregivers of middle-aged and older patients as well as those receiving treatment through inpatient settings or community outpatient clinics.

The social capital of older people

Gray, A. (2009)

How can the 'social capital' inherent in social networks provide contacts through which older people access practical and emotional support? What is the relative importance of kin and non-kin, and of participation in organisations and informal ties such as contacts with neighbours? Following a brief contextualisation that draws on previous literature, this paper addresses these questions through analysis of British Household Panel Survey (BHPS) data. It examines the extent to which people feel they can count on emotional and practical support from friends and relatives. A dependent variable was created that measures the outcome of the 'social capital' residing in a respondent's social network. Relatively poor support was found amongst elders who were childless or had been continuously without a partner; relatively rich support was found amongst those who had frequent contact with other people, who interacted frequently with neighbours, and who regarded their neighbourhood as a positive social environment. Being active in organisations had less effect on social support than informal social contacts. Amongst many different forms of organisational activity, the only ones that had a positive association with social support were being in contact with others through religious activities, and engaging in sports clubs. The social support of working-class elders, even those 'well networked' in formal or informal ways, was strengthened less by their social capital than was that of the professional and managerial occupational groups.

Using Internet to provide cognitive behavior therapy

Andersson G. (2009)

A new treatment form has emerged that merges cognitive behaviour therapy with the Internet. By delivering treatment components, mainly in the form of texts presented via web pages, and provide ongoing support using e-mail promising outcomes can be achieved. The literature on this novel form of treatment has grown rapidly over recent years with several controlled trials in the field of anxiety disorders, mood disorders and behavioural medicine. For some of the conditions for which Internet-delivered CBT has been tested, independent replications have shown large effect sizes, for example in the treatment of social anxiety disorder. In some studies, Internet-delivered treatment can achieve similar outcomes as in face-to-face CBT, but the literature thus far is restricted mainly to efficacy trials. This article provides a brief summary of the evidence, comments on the role of the therapist and for which patient and therapist this is suitable. Areas of future research and exploration are identified.

Using research evidence to inform and evaluate early childhood intervention practices

Dunst, C. and C. Trivette (2009)

This article includes descriptions of a process used to conduct practice-based research syntheses and the manner in which synthesis findings are used to inform and evaluate early childhood intervention practices. The main focus of a practice-based research synthesis is the unbundling of an intervention practice to identify those practice characteristics that are associated with desired outcomes and benefits. Also described are how the characteristics identified as most important are used to develop evidence-based practices and how the characteristics can be used as benchmarks to assess the likelihood that an untested practice will be effective. The article concludes with a discussion of the tension between research and practice and how that tension might be mitigated.

Using the Internet to provide cognitive behaviour therapy

Andersson, G. (2009)

A new treatment form has emerged that merges cognitive behaviour therapy with the Internet. By delivering treatment components, mainly in the form of texts presented via web pages, and provide ongoing support using e-mail promising outcomes can be achieved. The literature on this novel form of treatment has grown rapidly over recent years with several controlled trials in the field of anxiety disorders, mood disorders and behavioural medicine. For some of the conditions for which Internet-delivered CBT has been tested, independent replications have shown large effect sizes, for example in the treatment of social anxiety disorder. In some studies, Internet-delivered treatment can achieve similar outcomes as in face-to-face CBT, but the literature thus far is restricted mainly to efficacy trials. This article provides a brief summary of the evidence, comments on the role of the therapist and for which patient and therapist this is suitable. Areas of future research and exploration are identified.

Utvärdering av anhörigstöd i Skåne län

Andersson, H., & Holmgren, A. (2009)

Ramböll Management Consulting har på uppdrag av Länsstyrelsen i Skåne län
utvärderat anhörigstödet i Skåne utifrån ett anhörigperspektiv. Tio stycken
representativt utvalda kommuner i Skåne län har ingått i utvärderingen. Följande
frågor har analyserats;
 Hur har anhörigstödet vidareutvecklats?
 Hur har kvaliteten på anhörigstödet som erbjuds förbättrats?
 Hur har tillgängligheten till anhörigstödet förbättrats?
 Hur har stöd som efterfrågas av anhörigvårdare utvecklats?
 Hur har anhörigvårdarnas livskvalitet förbättrats?
 Hur har samverkan med andra frivilliga/ideella krafter påverkat
anhörigstödets utveckling?
Datainsamlingen har genomförts med hjälp av; intervjuer, fokusgrupper och
dokumentstudier. Flera av utvärderingens frågeställningar har kunnat belysas med
hjälp av två eller flera datainsamlingsmetoder samtidigt. Härigenom åstadkommer
vi en stabil grund för analysen och våra slutsatser.
Rambölls bedömning är att anhörigstödet har vidareutvecklats som följd av de
statliga stimulansmedlen. Fler kommuner erbjuder idag träffpunkter jämfört med
tidigare och fler må-bra-aktiviteter erbjuds. Anhörigsamordnare har inrättats i
samtliga kommuner som ingått i vårt urval och det förekommer allt fler nätverk
och erfarenhetsutbyten mellan kommunerna.
Kvaliteten i anhörigstödet har förbättrats under de åren som staten betalat ut
stimulansmedel. Fokus i flera kommuner har varit att bygga en verksamhet av god
kvalitet som är hållbar. Med anledning av detta har utvecklingen och utformandet
av verksamheten varit relativt likartad mellan kommunerna. I samtliga kommuner
som varit föremål för utvärderingen finns anhörigsamordnare samt ett brett utbud
av aktiviteter för anhörigvårdare.
Vad gäller tillgängligheten så bedömer Ramböll att den delvis har förbättrats.
Samtliga kommuner erbjuder en träffpunkt och har en anhörigsamordnare.
Information om stödet finns tillgängligt via broschyrer på exempelvis apotek och
vårdcentraler. Flera av anhörigsamordnarna, liksom biståndshandläggarna,
informerar även om stödet. Däremot upplever både kommunala tjänstemän och
anhörigvårdare att stödet inte når ut till alla som kan tänkas ha behov av det. Till
exempel är uppslutningen på träffpunkterna inte så stor som man önskat och man
vet att det finns fler i kommunen som är i behov av stödet. Vad detta beror på
finns det olika teorier om. En återkommande förklaring är att de i målgruppen inte
5
själva identifierar sig som vårdare av en anhörig utan i första hand som
make/maka där det är en plikt att man tar hand om sin sjuka närstående. Flera
anhörigvårdare beskriver hur svårt det är att ta klivet till att se bortom sin
närståendes situation och även börja tänka på och ta hand om sig själv.
Anhörigvårdare får det stöd de efterfrågar, inom ramen för vad som är rimligt. Det
är vanligt att anhörigsamordnare ordnar träffar och fokusgrupper där
anhörigvårdare lämnar förslag på hur de vill att exempelvis aktiviteterna och
träffpunkterna ska utformas och vad de ska innehålla. Som exempel efterfrågar
vissa anhörigvårdare utbildningar och information om exempelvis lyftteknik eller
demenssjukdomens olika stadier som kan ske i samband med träffpunkterna. Det
är också vanligt att andra föreningar och kommunala verksamheter bjuds in för att
prata om vilket stöd de kan bidra med.
Vad gäller livskvaliteten menar anhörigvårdare som deltar i verksamheten att den
definitivt har ökat. Man upplever trygghet och gemenskap. Avlastningen gör att
man känner sig spontan och fri. Dessutom upplever man mindre stress och oro då
man vet att man har någonstans att vända sig när det känns jobbigt. De anhöriga är
överens om att kommunens åtgärder leder till ökad livskvalitet för dem.
Samverkan med andra organisationer och föreningar varierar från kommun till
kommun och har delvis ökat. Svenska kyrkan och Röda Korset är de vanligaste
samverkanspartnerna. Andra man samverkar med är exempelvis pensionärs-,
demens- och invandrarföreningar. Att samverkan inte har ökat i högre
utsträckning kan bero på att det finns en viss konkurrens mellan föreningarna då
varje förening bevakar sitt medlemsantal. Rambölls bedömning är alltså att en
bristande samverkan inte beror på att anhörigsamordnaren underlåtit att försöka
etablera en samverkan.
Avslutningsvis har det förts resonemang dels om framgångsfaktorerna sett ur ett
organisatoriskt och verksamhetsperspektiv, dels om kommunen hade genomfört
åtgärderna utan statligt stöd.
Sett ur ett organisatoriskt perspektiv har speciellt viktiga framgångsfaktorer varit
inrättandet av anhörigsamordnare vars uppdrag varit att initiera verksamheten för
de anhöriga. Rambölls bedömning är att anhörigvårdarna själva inte hade orkat
starta en liknande verksamhet. Förutom att anhörigsamordnare har bidragit till att
skapa ett socialt nätverk för anhörigvårdare har de även arbetat aktivt med att
förankra anhörigperspektivet i alla delar av organisationen för att anhörigstödet
ska vara hållbart.
Sett ur ett verksamhetsperspektiv har en viktig framgångsfaktor för anhörigstödet
varit att de anhöriga själva har kunnat påverka utformningen av stödet. Dock har
den önskade effekten av information och kartläggningar, att nå hela målgruppen,
uteblivit.
6
Rambölls bedömer även att flera av aktiviteterna inte hade kunnat genomföras
utan statligt stöd. Anhörigstödet har delvis finansierats av kommunala medel men
med hjälp av statliga stimulansmedel har stödet kunnat prioriteras och fokuseras.

Utvärdering av den avgiftsfria avlösningen inom äldreomsorgens Öppna och förebyggande verksamhet

Ericsson, U.-B., Henriksson, K., & With Broné, U. (2009)

Syftet med utvärderingen är att ta reda på om den avgiftsfria avlösningen har underlättat
situationen för anhöriga som hjälper eller vårdar någon närstående i hemmet, samt att inhämta
synpunkter och förslag på olika former av stöd kommunen bör vidareutveckla och satsa på.
En första utvärdering gjordes för perioden september 2005 t.o.m. februari 2006, den andra för
perioden mars 2006 t.o.m. december 2007.
Utvärderingen för perioden januari 2008 t.o.m. december 2008 genomfördes som tidigare i
enkätform och sändes till de 69 anhöriga i Uppsala kommun som erbjudits avgiftsfri
avlösning i hemmet eller i gruppverksamhet. De flesta anhöriga är maka/make men fyra är
barn samt ett syskon. Svar erhölls från 47 personer, varav 34 kvinnor och 13 män.
Den vanligaste orsaken till närståendes behov av hjälp är nedsatt fysisk och psykisk oförmåga
i kombination med annan sjukdom såsom demenssjukdom och stroke. Även hjärtkärlsjukdom
och nedsatt syn- och hörsel uppges som orsak till hjälpbehov.
Majoriteten av de anhöriga tycker att avlösningen har fungerat mycket bra. De är nöjda med
att få tid till att uträtta ärenden och att få ägna sig åt egna intressen. Samtidigt är den
närståendes välbefinnande och möjlighet till aktivitet och omväxling viktig. För dem som har
avlösning i hemmet skapar det trygghet att det är samma person som kommer.
När det gäller önskemål om stöd och hjälpinsatser handlar det främst om att få mer tid avsatt
för avlösning.

Validation of an inventory of best practices in the provision of augmentative and alternative communication services to students with severe disabilities in general education classrooms

Calculator, S. N. and T. Black (2009)

Purpose: To compile and then validate a set of evidence-based best practices related to augmentative and alternative communication (AAC) and its role in fostering the inclusion of students with severe disabilities in general education classrooms and other inclusive settings. Method: A comprehensive review of the literature pertaining to AAC and inclusive education for students with severe disabilities in inclusive classrooms resulted in an inventory of possible best practices. Reliability testing was conducted to verify levels of evidence assigned to each source and corresponding practice. Practices were reviewed and validated by a panel of 8 experts. Statistical analysis revealed a high level of internal consistency across items composing the inventory. Results: An inventory of 91 practices, each assigned to 1 of 8 predetermined categories, was uncovered. Themes arising in experts' comments related to items in the inventory are discussed. Conclusions: Possible uses of the inventory are discussed along with suggestions for future research. © American Speech-Language-Hearing Association.

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.

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

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.

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.

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.

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.

“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.

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 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.

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.

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 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.

Barriers and contributors to minority older adults' access to mental health treatment: perceptions of geriatric mental health clinicians

Choi, N. G. and J. M. Gonzalez (2005)

This exploratory study examined geriatric mental health clinicians' experiences and perceptions of the circumstances in which African American and Mexican American older adults access outpatient specialty mental health treatment and the factors that impede or facilitate such access. Eighteen mental health clinicians from three outpatient geriatric mental health clinics in one urban and two rural areas in central Texas discussed their perceptions in three focus groups and/or individual interviews conducted by the authors. The clinicians identified the common circumstances in which minority older adults' access to mental health treatment involves loss and grief in later life coupled with lack of informal social support. Although clinicians confirmed existence of the access barriers identified by previous studies (lack of understanding about mental disorders, shame and stigma, cultural differences, fear and distrust of the treatment system, primary care physicians' knowledge deficit about mental disorders, and financial and transportation barriers), they also identified minority older adults' lack of information on referral processes as a serious barrier. As access contributors, physician referral; support and encouragement from family, especially adult children; availability of bilingual/bicultural clinicians; and transportation were identified. Implications of the findings are also discussed.

Brief Report: Family-Based Group Intervention for Yong Siblings of Children with Chronic Illness and Developmental Disability

Lobato, Debra, J. & Kao, Barbara, T. (2005)

Objective To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). Methods Forty-three healthy siblings (ages 4–7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. Results Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. Conclusions Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.

Carers in the welfare state : on informal care and support for carers in Sweden.

Jegermalm, M. (2005)

The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the 'heavy end' of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I).Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II).The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II).The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84.In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government's special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III).Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government's special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV).In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm.In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.

Children's adjustment to a parent's stroke: determinants of health status and psychological problems, and the role of support from the rehabilitation team

Visser-Meily A, Post M, Meijer AM, Maas C, Ketelaar M, Lindeman E. (2005)

OBJECTIVE: To investigate the support given to young children of patients with stroke by rehabilitation teams and to identify characteristics of the patients, spouses and children that relate to children's adjustment 2 months after the patient's discharge. SUBJECTS AND METHODS: Seventy-seven children (< or =18 years of age) of patients with stroke consecutively admitted to inpatient rehabilitation were included. Adjustment was measured with the Child Behaviour Check List, Child Depression Inventory and Functional Status II. Multilevel regression analyses were conducted to identify determinants of adjustment. RESULTS: Half of the children received some form of support from a rehabilitation team. Receiving more support was related to more severe disability of the parent with stroke, but not to the child's health or behavioural problems at the start of the stroke victim's inpatient stay. At the start of rehabilitation, 54% of the children had subclinical or clinical problems. Children's adjustment 2 months after their parent's discharge was related to the strain on spouses and not to the patients' characteristics or those of the support. CONCLUSION: The children's adjustment was related to the strain perceived by the healthy parent. There is a need for support that focuses on the experience of children of patients with stroke, regardless of stroke severity.

Choice and preference assessment research with people with severe to profound developmental disabilities: A review of the literature

Caltenco, H., Larsen, H. S., & Hedvall, P. O. (2005)

Since the last major empirical review on choice interventions and preference assessments among people with severe to profound developmental disabilities (Lancioni, O'Reilly, & Emerson, 1996) the body of research in this area has grown extensively. This paper reviews thirty studies carried out between 1996 and 2002 that have been sorted into four categories. These categories are (a) building choice opportunities into daily contexts; (b) assessing the effects of choice making on various parameters of behavior; (c) assessing preferences; and (d) assessing the effectiveness of various preference assessment formats. The main findings in these studies were that choice interventions led to decreases in inappropriate behavior and increases in appropriate behavior, and that various preference assessments could be used to identify reinforcing stimuli. The findings are discussed in relation to technical and practical rehabilitation questions. Potential issues for future research are also examined.

Clinical implications of The development of the person

Suess, G. J., & Sroufe, J. (2005)

The Minnesota longitudinal study of parents and children from birth to adulthood provides both a theoretical framework and a host of empirical findings that can serve to bridge the gap between research and clinical application. Key among these findings are: (a) the ongoing impact of early relationship experiences throughout the years, even with later experience and circumstances controlled; (b) the cumulative nature of experience and its continual impact with current context; (c) the important role of adult partner relationships; (d) the increasingly active role of the persons themselves in their own development; and (e) the interplay between experience, representation, and ongoing adaptation. These findings, and the theoretical structure underlying them, suggest the need for complex, comprehensive intervention that begins early, with a focus on altering the quality of parent - child relationships. At the same time, additional components, including couples therapy and efforts to alter the child's inner constructions of experience, are clearly suggested. One must attend to forces maintaining children on maladaptive developmental pathways once established, as well as understanding the factors that initiated such pathways.

Cognitive impairment after stroke - impact on activities of daily living and costs of care for elderly people. The Goteborg 70+ Stroke Study.

Claesson L, Linden T, Skoog I, Blomstrand C. (2005)

BACKGROUND AND PURPOSE:
The economic burden of stroke is substantial and is likely to increase with an increasing number of elderly individuals in the population. There is thus a need for information on the use of health care resources and costs among these elderly stroke patients. We examined the impact of the cognitive impairments on the ability to perform activities of daily living (ADL) and utilization and costs of health care in a cohort of elderly stroke patients.
METHODS:
One hundred and forty-nine patients aged >/=70 years with acute stroke were included. The patients were assessed regarding their ability to carry out ADL and health resource utilization and cost during the first year after stroke. Cognitive impairments were assessed 18 months after the index stroke.
RESULTS:
Stroke severity in acute stroke and cognitive impairment at 18 months after stroke onset was associated with impairment in ADL and increased costs for utilisation of care during the first year. Patients with cognitive impairment were more dependent on personal assistance in ADL. Costs per patient during the study were three times higher for patients with cognitive impairment. Hospital care, institutional living and different kinds of support from society accounted for the highest costs.
CONCLUSIONS:
Costs of care utilisation during the first year after stroke were associated with cognitive impairments, stroke severity and dependence in ADL. The results should be interpreted cautiously as the assessment of cognitive function was made 18 months after stroke onset and costs were estimated for the first year after stroke.

Computerized training of working memory in children with ADHD- a randomized, controlled trial

Klingberg T, Fernell E, Olesen PJ, Johnson M, Gustafson P, Dahlström K, et al. (2005)

Objective

Deficits in executive functioning, including working memory (WM) deficits, have been suggested to be important in attention-deficit/hyperactivity disorder (ADHD). During 2002 to 2003, the authors conducted a multicenter, randomized, controlled, double-blind trial to investigate the effect of improving WM by computerized, systematic practice of WM tasks.

Method

Included in the trial were 53 children with ADHD (9 girls; 15 of 53 inattentive subtype), aged 7 to 12 years, without stimulant medication. The compliance criterion (>20 days of training) was met by 44 subjects, 42 of whom were also evaluated at follow-up 3 months later. Participants were randomly assigned to use either the treatment computer program for training WM or a comparison program. The main outcome measure was the span-board task, a visuospatial WM task that was not part of the training program.

Results

For the span-board task, there was a significant treatment effect both post-intervention and at follow-up. In addition, there were significant effects for secondary outcome tasks measuring verbal WM, response inhibition, and complex reasoning. Parent ratings showed significant reduction in symptoms of inattention and hyperactivity/impulsivity, both post-intervention and at follow-up.

Conclusions

This study shows that WM can be improved by training in children with ADHD. This training also improved response inhibition and reasoning and resulted in a reduction of the parent-rated inattentive symptoms of ADHD.

Depressive disorders in caregivers of dementia patients: A systematic review

Cuijpers, P. (2005)

This study examines plans for future caregiving made by family members of younger (n =59) and older adults (n =16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.

Det barn vi fick

Bryhagen, Åsa (2005)

Ett handikappat barn - inte ett friskt eller välskapt. Vi drabbas av livet, förs in i en kris som innebär en helt annan kamp och oro än vi tänkt oss. Våra fasader och masker faller och vi förs till våra djupaste frågor.
Ur det brustna växer något nytt, ömtåligare och mänskligare.
Det barn vi fick är en personlig berättelse med vinklingar och funderingar kring ett annorlunda barn och handikapp, skola, samhälle, människosyn och människovärde.

Boken vänder sig till alla som är direkt berörda, Föräldrar, anhöriga, de som genom yrke eller engagemang möter dessa barn och vuxna.

Determinants of quality of life in stroke survivors and their informal caregivers

Jönsson A, Lindgren I, Hallström B, Norrving B, Lindgren A. (2005)

BACKGROUND AND PURPOSE: We examined longitudinal changes of quality of life (QOL) covering physical and mental factors in an unselected group of stroke patients and their informal caregivers. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be related to the patients' status. METHODS: QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients. RESULTS: The patients' mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients' most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers' most important determinants of QOL were their own age and the patients' functional status. CONCLUSIONS: Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotional-mental scores.

Dialektisk beteendeterapi vid borderline personlighetsstörning. Utvärdering av nya metoder inom hälso- och sjukvården

SBU (2005)

Metod och målgrupp
Borderline personlighetsstörning kännetecknas av ett genomgående mönster av instabilitet i regleringen av känslor, bristande impulskontroll, relationsproblem och låg självkänsla. I kliniska sammanhang yttrar sig störningen i svårigheter att hantera känslor, impulsiva handlingar och aggressivitet, upprepade tillfällen med självskadande beteenden och självmordsförsök. Patienter med borderline personlighetsstörning har ofta även andra personlighetsstörningar eller sjukdomar, t ex depression, ätstörning, drogmissbruk och ångestsjukdomar. DBT är en omfattande och avancerad form av kognitiv beteendeterapi (KBT) som specifikt utvecklats för kroniskt självmordsbenägna patienter med borderline personlighetsstörning. Metoden har flera inslag, bl a beteendeförändrande tekniker och metoder för att lära sig acceptera känslor. Behandlingen genomförs i flera steg, där självskadande och terapistörande beteenden prioriteras när behandlingen inleds. Ett utmärkande drag för DBT är den omfattande kontakt som behandlingsteamet har med patienten i form av individualterapi, gruppterapi och telefonstöd. Utöver detta ingår handledning och stöd till personal som arbetar med patientgruppen. Det har beräknats att i Sverige har mellan 70 000 och 140 000 personer diagnosen borderline personlighetsstörning. Hur många av dessa som skulle kunna bli aktuella för behandling med DBT är inte klarlagt.

Frågeställning
Kan behandling med DBT ge en minskning av självskadebeteende och drogmissbruk hos personer med borderline personlighetsstörning?

Patientnytta
I sex randomiserade kontrollerade studier har DBT prövats mot annan psykiatrisk behandling. En stor andel kvinnor har ingått i dessa. Behandlingens längd har oftast varit ett år och resultaten varierar mellan studierna, vilket delvis beror på att olika undergrupper har studerats. Resultaten har visat att DBT leder till minskat självskadebeteende och även till färre behandlingsavbrott. Effekten har visat sig kvarstå vid uppföljning upp till två år. Behandlingen medför eventuellt också minskat behov av sjukhusvård, och hos missbrukare minskad droganvändning. Det finns inga bevis för att resultaten av behandlingen skulle påverkas av om patienten även har en missbruksdiagnos. Det finns inga säkra resultat vad gäller de olika behandlingskomponenternas betydelse för utfallet.

Ekonomiska aspekter
Kostnaden för DBT har undersökts i en svensk studie. Den totala årliga vårdkostnaden per patient sjönk från 320 000 kronor året innan behandlingen startade till 210 000 kronor då behandlingen gavs. Det finns ett behov av hälsoekonomiska studier där metodens kostnadseffektivitet undersöks.

SBU:s bedömning av kunskapsläget
Det finns begränsat vetenskapligt stöd för att DBT leder till minskat självskadebeteende och att effekten kvarstår vid uppföljning upp till två år (Evidensstyrka 3)*. Eventuellt medför behandlingen också minskat behov av sjukhusvård samt hos missbrukare minskad droganvändning. DBT förefaller således vara en lovande behandlingsform för patienter med borderline personlighetsstörning. Den behöver dock utprövas för svenska förhållanden och det är angeläget att studier avseende metodens kostnadseffektivitet genomförs.

* Detta är en gradering av styrkan i det vetenskapliga underlag som en slutsats grundas på. Graderingen görs i tre nivåer;
Evidensstyrka 1 = starkt vetenskapligt underlag,
Evidensstyrka 2 = måttligt starkt vetenskapligt underlag,
Evidensstyrka 3 = begränsat vetenskapligt underlag.

Detta är SBU:s sammanfattning och bedömning av kunskapsläget. Den bygger på en rapport som är framtagen av SBU i samarbete med Gerhard Andersson (sakkunnig), professor, psykolog, Institutionen för beteendevetenskap, Linköpings universitet, Margda Wærn (granskare), docent, överläkare, Institutionen för klinisk neurovetenskap, Sahlgrenska akademin vid Göteborgs universitet och Lars-Göran Öst (granskare), professor, psykolog, Psykologiska institutionen, Stockholms universitet.

Disorganized infant attachment and preventive interventions: A review and meta-analysis

Bakermans-Kranenburg, M. J., Van Ijzendoorn, M. H., & Juffer, F. (2005)

Infant disorganized attachment is a major risk factor for problematic stress management and later problem behavior. Can the emergence of attachment disorganization be prevented? The current narrative review and quantitative meta-analysis involves 15 preventive interventions (N = 842) that included infant disorganized attachment as an outcome measure. The effectiveness of the interventions ranged from negative to positive, with an overall effect size of d = 0.05 (ns). Effective interventions started after 6 months of the infant's age (d = 0.23). Interventions that focused on sensitivity only were significantly more effective in reducing attachment disorganization (d = 0.24) than interventions that (also) focused on support and parent's mental representations (d = −0.04). Most sample characteristics were not associated with differences in effect sizes, but studies with children at risk were more successful (d = 0.29) than studies with at-risk parents (d = −0.10), and studies on samples with higher percentages of disorganized attachment in the control groups were more effective (d = 0.31) than studies with lower percentages of disorganized children in the control group (d = −0.18). The meta-analysis shows that disorganized attachments may change as a side effect of sensitivity-focused interventions, but it also illustrates the need for interventions specifically focusing on the prevention of disorganization.

Disorganized infant attachment and preventive interventions: a review and meta-analysis (Structured abstract).

BAKERMANS-KRANENBURG, M. J., MH, I. J. & JUFFER, F. (2005)

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

Disorganized infant attachment and preventive interventions: a review and meta-analysis (Structured abstract).

BAKERMANS-KRANENBURG, M. J., MH, I. J. & JUFFER, F. (2005)

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

Don't hit my mommy: A manual for child parent psychotherapy with young witnesses of family violence

LIEBERMAN, A. F. & VAN HORN, P. (2005)

This practical handbook offers treatment guidelines to address the behavioral and mental health problems of young children whose most intimate relationships are disrupted by the experience of violence. Practitioners from a variety of disciplines will gain an understanding of the impact of violence and will discover concrete intervention strategies to address the consequences of this experience for young children.

Effects of Mental illness on family quality of life

Walton-Moss, B., Gerson, L., Rose, L. (2005)

Worldwide, at least 25% of persons and their families are affected by mental illness resulting in significant stress and burden; yet little is known about how the illness affects quality of family life. In this paper, we report a secondary analysis of a grounded theory study that identified the process by which 17 families managed mental illness over time. Families were characterized as Hanging On, Being Stable, or Doing Well based on their responses to caring for relatives with mental illness. Most of the families perceived themselves as Being Stable or Doing Well and four families perceived themselves as Hanging On. In this paper, these descriptors of family quality of life, interpreted within the context of family development and illness trajectories, are presented as a focus of professional support and intervention.

Emerging from Out of the Shadows? Service User and Carer Involvement in Systematic Reviews

Braye, S. and M. Preston-Shoot (2005)

The systematic review methodology literature refers to the importance of involving stakeholders, including service users & carers, in the research. However, compared with other aspects of the methodology, this aspect of conducting systematic reviews is underdeveloped & the practice of involvement appears highly variable. This article draws on the experience of working with service users & carers in one systematic review to review the barriers to participation & the components of effective involvement. It suggests that quality standards can be identified for service user & carer involvement in systematic reviews, which will benefit policy & practice development. 77 References.

Evaluation of a preventive intervention for bereaved children

Christ, G.H., Raveis, V.H., Siegel, K., Karas, D. & Christ, A.E. (2005)

One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent's terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent's competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental interventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not adequately capture changes in non-psychopathological but bereaved distressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be insufficient to allow measurement of meaningful differences between interventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the specifically targeted intervention area that differences can be expected to be significant in adequately resourced families.

Exploring parents' use of strategies to promote social participation of school-age children with acquired brain injuries

Bedell G, Cohn ES, Dumas HM. (2005)

OBJECTIVE:
To understand parents' perspectives about the strategies they use to promote social participation of their school-age children with acquired brain injuries (ABI) in home, school, and community life.
METHOD:
A descriptive research design employing a semistructured interview format was used. Interviews were conducted in the homes of 16 families of school-age children with ABI discharged up to 7 years earlier from one inpatient rehabilitation program. Data were examined using content and constant-comparison analyses.
RESULTS:
Parents needed time to allow the recovery process to unfold for themselves and their children and developed strategies that fit into or assisted with managing family routines. Over time parents developed insight into the activity demands and their child's potential success to participate in desired activities. Based on these insights, parents used "anticipatory planning," which involved previewing upcoming events and activities and using strategies to promote positive and prevent negative experiences for their children. Specific strategies that parents used to promote social participation were classified into three categories: Creating opportunities, teaching skills, and regulating cognitive and behavioral function.
CONCLUSIONS:
Understanding how families use and integrate strategies within the context of their daily lives and what factors influence strategy use may provide practitioners with insights needed to support families in promoting their children's social participation.

Families and risk: Prospective analyses of family Psychology

Pomery, EA., Gibbons, FX,, Gerrard, M., Cleveland, M.J., Brody, GH., & Willis, TA. (2005)

Parental, peer, and older siblings' contributions to adolescents' substance use were investigated with 2 waves of panel data from 225 African American families. Structural equation modeling showed that older siblings' behavioral willingness (BW) to use substances at Time 1 (T1) predicted target adolescents' Time 2 (T2) use, controlling for other T1 variables. Regression analyses revealed an interaction between targets' and siblings' BW, such that targets were more likely to use at T2 if both they and their siblings reported BW at T1. This interaction was stronger for families living in high-risk neighborhoods. Finally, siblings' willingness buffered the impact of peer use on targets' later use: Low sibling BW was associated with less evidence of peer influence.

Families at high and low risk for depression: a 3-generation study

Weissman M, Wickramaratne P, Nomura Y, Warner V, Verdeli H, Pilowsky D, et al. (2005)

BACKGROUND: The familial nature of early-onset major depressive disorder (MDD) has been documented in numerous family studies of adults and is supported by studies of offspring of parents with MDD, for whom the risk is more than 3-fold. None of the published high-risk studies have gone beyond 2 generations, and few have a longitudinal design. We report results of an approximately 20-year follow-up of families at high and low risk for depression. The first 2 generations were interviewed 4 times during this period. The offspring from the second generation are now adults and have children of their own, the third generation of the original cohort. OBJECTIVE: To examine the familial aggregation of psychiatric disorders and functioning in grandchildren by their parents' and grandparents' depression status. DESIGN: Longitudinal, retrospective cohort, family study. PARTICIPANTS: One hundred sixty-one grandchildren and their parents and grandparents. MAIN OUTCOME MEASURES: Lifetime rate of psychiatric disorder and functioning in grandchildren, stratified by parental and by grandparental depression status, collected by clinicians blind to diagnoses of previous generations and to previous interviews. RESULTS: There were high rates of psychiatric disorders, particularly anxiety disorders, in the grandchildren with 2 generations of major depression, with 59.2% of these grandchildren (mean age, 12 years) already having a psychiatric disorder. The effect of parental depression on grandchildren's outcomes differed significantly with grandparental depression status. Among families with a depressed grandparent, increased risk of anxiety (relative risk, 5.17; 95% confidence interval, 1.4-18.7; P = .01) and increased risk of any disorder (relative risk, 5.52; 95% confidence interval, 2.0-15.4; P = .002) were observed in grandchildren with a depressed parent as compared with those with nondepressed parents. The severity of parental depression, as measured by impairment, significantly increased the rate of a mood disorder in these grandchildren (relative risk, 2.44; 95% confidence interval, 1.1-5.5; P = .03). In contrast, among grandchildren with nonfamilial depression, ie, depressed parents with no depressed grandparents, there was no significant effect of parental MDD on grandchildren diagnoses. However, parental MDD, regardless of whether families had a depressed grandparent, had a significant impact on the grandchildren's overall functioning. Potential confounding variables did not affect the strength of the association with parental and grandparental depression. CONCLUSIONS: The association between parental MDD and child diagnosis is moderated by grandparental MDD status. The rates of psychopathology are highest in grandchildren of parents and grandparents with a moderately to severely impairing depression. Anxiety disorders are the early sign of psychopathology in the young grandchildren. Early interventions in the offspring of 2 generations affected with moderately to severely impairing MDD seem warranted. This familial group may be the target for neuroimaging, genetic, and other biological studies.

Family burden and relatives` participation in psychiatric care: Are the patient`s diagnosis and the relation to the patient of importance?

Östman, M., Wallsten, T., & Kjellin, K. (2005)

BACKGROUND:
Studies that differentiate among diagnoses have detected divergent results in the experience of family burden.
AIM:
This study aimed to investigate differences in family burden and participation in care between relatives from subgroups of psychoses, affective disorders and 'other diagnoses', and between different subgroups of relatives.
METHOD:
In a Swedish longitudinal study performed in 1986, 1991 and 1997, 455 close relatives of both committed and voluntarily admitted patients were interviewed concerning different aspects of their burden, need for support and participation in the actual care situation.
RESULTS:
Relatives showed burdens in several of the aspects measured. In only one aspect of the investigated burden items was a difference found between different diagnostic subgroups. The relatives of patients with affective disorder more often had to give up leisure time. However, spouses showed more burdens and more often experienced sufficient participation in the patient's treatment than other subgroups while siblings more seldom experienced burdens and more seldom felt that their own needs for support had been met by the psychiatric services. Within each diagnostic subgroup there were differences between subgroups of relatives.
CONCLUSION:
Being a close relative, and living together with a severely mentally ill person in an acute situation, is one factor of importance for experiencing burden and participation in care, contradicting the conventional wisdom which differentiates between diagnoses.

Family Connections: A Program for Relatives of Persons with Borderline Personality Disorder

Hoffman, P. D., Fruzzetti, A. E., Buteau, E., Neiditch, E. R., Penney, D., Bruce, M. L., et al. (2005)

This study assessed changes in family members who participated in Family Connections, a 12-week manualized education program for relatives of persons with borderline personality disorder (BPD). Family Connections, led by trained family members, is based on the strategies of standard Dialectical Behavior Therapy (DBT) & DBT for families. The program provides (a) current information & research on BPD, (b) coping skills, (c) family skills, & (d) opportunities to build a support network for family members. Forty-four participants representing 34 families completed the pre-, post-, & 6-month postbaseline self-report questionnaires. Analyses employing hierarchical linear modeling strategies showed significant reductions in grief & burden, & a significant increase in mastery from pre- to post-group assessment. Changes were maintained at 6 months post baseline. 1 Table, 19 References. Adapted from the source document.

Family support for stroke: one year follow up of a randomised controlled trial.

Mant J, Winner S, Roche J, Wade DT. (2005)

BACKGROUND:
There is evidence that family support can benefit carers of stroke patients, but not the patients themselves.
OBJECTIVE:
To extend the follow up of a single blind randomised controlled trial of family support for stroke patients and carers to one year to ascertain whether there were any late effects of the intervention.
METHODS:
The study was a randomised controlled trial. Patients admitted to hospital with acute stroke who had a close carer were assigned to receive family support or normal care. Families were visited at home by a researcher 12 months after the stroke, and a series of questionnaires was administered to patient and carer.
RESULTS:
The benefits to carers mostly persisted, though they were no longer statistically significant because some patients were lost to follow up. There was no evidence of any effects on patients.
CONCLUSION:
Family support is effective for carers, but different approaches need to be considered to alleviate the psychosocial problems of stroke patients.

Flickan och kajorna

Riita Jalonen, Kriistina Louhi (2005)

En flicka står under ett träd utanför tågstationen. Hennes mamma är inne och köper biljetter för att de ska resa bort. Flicka tittar på kajorna i trädet hon står under, tänker på saknad och minnen av pappa som är död. Hon tänker på vad de gjorde, vad hon minns av honom och hur det känns inuti att ha en pappa som är död. Hennes tankar vindlar över sidorna, från det ena till det andra, men saknade efter pappa går som en röd tråd genom boken. Stora mättade bilder illustrerar boken. Boken passar barn från 5 år.

Framgångsrika preventionsprogram för barn och unga. En forskningsöversikt

Ferrer-Wreder, L.; Stattin, H.; Cass Lorente, C.; Tubman, J.G. & Adamson, L. (2005)

Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.

Framgångsrika preventionsprogram för barn- och unga. En forskningsöversikt.

Ferrer-Wreder L, Stattin H, Cass Lorante C, Tubman JG, Adamsson L. (2005)

Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.

Föräldrar med utvecklingsstörning och deras barn –vad finns det för kunskap?

Socialstyrelsen (2005)

I denna samanställning av befintlig forskning framkommer att några områden är mer studerade än andra. Ett antal studier har undersökt föräldraförmåga och föräldrakompetens. I dag vet man ganska väl vad som kan fungera och vad som kan brista i föräldrarnas förmåga att ta hand om sina barn. Resultat från olika studier visar att träning och utbildning kan förbättra föräldrarnas förmåga. En förutsättning för detta är dock att utbildningen är kontinuerlig såväl över tid som i kontakten med de professionella. Befintliga studier inkluderar oftare mödrar än fäder vilket innebär att det finns mer kunskap om mödrarna. Endast ett fåtal studier har undersökt fäderna och männen i kvinnornas liv.

Vidare finns det ett fåtal studier som fokuserar barnet i de familjer där föräldrarna har en utvecklingstörning. Den forskning som finns visar dock att barnen utgör en riskgrupp. Riskfaktorerna varierar delvis beroende på barnets ålder, men även beroende på om barnet har en utvecklingsstörning. Det rapporteras att det finns risk för att barnen försummas vilket kan ta sig uttryck i bristande omvårdnad, att barnen inte får näringsriktig kost, bristande säkerhet i hemmet och bristande hygien. Det finns även risk för att barnen utsätts för misshandel. Studier visar en ökad risk för att barn med utvecklingsstörning utsätts för misshandel och/eller sexuella övergrepp jämfört med andra barn, oavsett om föräldrarna har en utvecklingsstörning eller inte.

Det rapporteras att barn som har föräldrar med utvecklingsstörning kan ha svårigheter med språklig och kognitiv utveckling. Dessutom förekommer det att barnen har beteendeproblem och emotionella svårigheter och det är vanligare att barnen har psykiska svårigheter, framför allt depressioner, än andra barn. Förekomsten av svårigheter samt barnens utsatthet kan påverka barnens förmåga att senare i livet fungera som föräldrar.
Hur livet gestaltar sig för de barn som har vuxit upp med föräldrar som har en utvecklingstörning finns det liten kunskap om. I en dansk studie har forskarna funnit att kvinnorna lever ett mer utsatt liv än männen. I en studie från England finns det resultat som visar att de "vuxna barnen" som själva har en utvecklingsstörning har ett mer fungerande liv jämfört med de "vuxna barn" som är normalbegåvade.

Familjernas möten med det offentliga har studerats ur ett antal olika perspektiv, såväl barnens, föräldrarnas, närståendes som professionellas. I mötet mellan familj och professionella rapporteras att det är av stor betydelse att professionella är väl förtrogna med familjens behov, att de samordnar sina insatser, att det inte är för många inblandade och att man samverkar med familjen och tar hänsyn till familjemedlemmarnas behov.

När det gäller hälsobefrämjande faktorer i familjer där föräldrarna har en utvecklingsstörning finns det resultat som visar på betydelsen av såväl informella som formella nätverk. Forskare har funnit att det är olika karaktär på stödet från det formella respektive det informella nätverket. Det informella nätverket bidrar med praktisk hjälp i vardagslivet. Det formella nätverket bidrar med sakkunskap om viktiga funktioner i samhället, kunskap om interaktion mellan föräldrar och barn samt stöd för att föräldrarna skall utveckla sin kompetens.

Flertalet studier påpekar vikten av att kartlägga föräldrarnas och familjernas levnadsomständigheter för att kunna genomföra relevanta insatser. En rad olika mer eller mindre framgångsrika insatser som prövats i familjerna har rapporterats. Som framgångsfaktorer omnämns att stödet ska utformas efter barnens och föräldrarnas behov, att det är kontinuerligt och att det genomförs under en längre tid. För att insatser skall ge god effekt bör de vara anpassade till familjens omgivning, de bör vara prestationsbaserade och omfatta förebilder, praktisk feedback, beröm och belöningar. Forskare menar även att insatserna skall utformas så att det blir möjligt för föräldrar att utvecklas utifrån sina förutsättningar.

Gender perspective on informal care for elderly people one year after acute stroke

Gosman-Hedström, G. and L. Claesson (2005)

BACKGROUND AND AIMS: The aim of the one-year follow-up was to evaluate formal care and the situation of informal caregivers from a gender perspective. METHODS: The present study targeted elderly persons (n = 147) living in their own homes 12 months after acute stroke, 94 women and 53 men. The median age of the women was 81 years and the men 80 years. RESULTS: A statistically significant gender difference was seen in living conditions. Eighty percent of the women were living alone compared with 28% of the men (CI 48-56%). The informal care given far exceeded that provided by the community: 65% of these elderly people had some kind of informal care and 44% received formal care from the community. There was a gender difference in daily informal personal care, 24% of men and 16% of women (CI 2-18%), and in daily informal household assistance (CI 15-43%). Formal care was provided by the community significantly more frequently to women (56%) than men (23%) (CI 21-45%). The women more frequently had community-based help with house-cleaning (CI 23-39%) and they also more frequently received help with personal care (CI 1-10%). CONCLUSIONS: This study showed statistically significant gender differences in the use of informal and formal care. Elderly caregivers' situations must be given greater attention, since informal care to stroke survivors represents a far greater burden than the care that is provided by the community. Most of the caregivers were elderly women, and preventive intervention measures should be developed in order to enable them to manage their everyday lives.

Helping your children cope with cancer. A guide for parent and families.

Van Dernoot, P. (2005)

Cancer is bad news. It' s frightening to even think about it. Now think how frightening it would be for your children to know you have cancer. How do you tell them? How do you deal with the trauma and the pain? How do you prepare for the emotional and psychological upheaval a family endures when a parent has cancer? Peter Van Dernoot has gathered the real-life stories and experiences of over twenty parents who have been diagnosed with cancer. They share their deepest fears and their highest hopes as they provide the reader with invaluable advice, guidance and inspiration. Now including all-new stories from parents and advice from professional counselors, this groundbreaking book is a very special gift from families affected by cancer to families affected by cancer

Hälsans mysterium

Antonovsky A. (2005)

Vad är det som gör att en del av oss klarar av även mycket svåra påfrestningar med hälsan i behåll – och kanske till och med växer och vidareutvecklas av dem? Författarens tes är att motståndskraften beror på vår känsla av sammanhang, d v s den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar.
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Illuminating patients with children up to 18 years of age – A 1-day-inventory study in a psychiatric service

Östman, M., & Eidevall, L. (2005)

This study reports the possibility of accomplishing a survey in an ordinary psychiatric service organization to identify the children and the adolescents in families with a parent with mental illness and to highlight the number of patients in psychiatric treatment with little or virtually no contact with their minor children. The prevalence of patients being parents to minor children was 36% in the total sample consisting of 137 patients, from both inpatient and outpatient services, participating in the survey. Three of four patients were living together with the children. A higher proportion of patients in the outpatient unit were parents to minor children, and more often lived together with them. There were no differences in prevalence of patients with minor children according to sex or diagnostic subgroup. However, female patients more often and patients with a psychosis diagnosis more seldom had the custody of the children. A majority of the patients had communicated with their children about their own situation, showing that psychiatric patients care a lot about the situation of their children, although, according to the patients, the psychiatric services only take an active part in this information in a minority of the cases. The study may be found to be a basis for inspiring structured interventions and treatments programmes, including the minor children of the adult patients seeking psychiatric treatment. Prevention of mental disorders in the oncoming generation is an important issue for all psychiatric professionals, especially in co-operation between adult and child/adolescent psychiatric services.

Inclusive education for high school students with severe intellectual disabilities: Supporting communication

Downing, J. E. (2005)

This article provides a summary of different strategies used to support the complex communication needs of high school students with severe intellectual disabilities and additional impairments who are included in general education classrooms. The premise of this paper is that students with severe cognitive disabilities benefit from inclusive educational opportunities at the high school level and can acquire critical communication skills, given the necessary support. High school students typically communicate for a variety of purposes and use a variety of different modes of communication. This variety in purpose and mode extends to students who do not use speech and have other severe disabilities. The role that peers can play in the development of communication for high school students is described, as well as the need to critically evaluate the learning environment in order to identify communication opportunities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Increasing functional communication in non-speaking preschool children: Comparison of PECS and VOCA

Bock, S. J., Stoner, J. B., Beck, A. R., Hanley, L., & Prochnow, J. (2005)

For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.

Increasing functional communication in non-speaking preschool children: Comparison of PECS and VOCA.

Bock, S. J., Stoner, J. B., Beck, A. R., Hanley, L., & Prochnow, J. (2005)

For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.

Informal elderly care and women´s labour force participation across Europe.

Viitanen, T. (2005)

This paper uses the European Community Household Panel (ECHP) to analyze the relationship between the dynamics of labour force participation and informal care to the elderly for a sample of women aged 20-59 across 13 European countries. The analysis has two focal points: the relative contributions of state dependence as well as observed and unobserved heterogeneity in explaining the dynamics in women's labour force participation and the existence and consequences of non-random attrition from the ECHP. The results indicate positive state dependence in labour force participation in all 13 EU countries used in the analysis. The share of unobserved heterogeneity accounts for between 45% and 86% of the total variation in labour force participation. Informal care-giving is found to have a significant, negative impact on the probability of employment only in Germany. Nevertheless, analysis of different sub-groups indicates that the impact is largest for middle-aged women and also for single women in several EU countries.

Intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients. Controlled clinical trial with follow-up assessment six months after discharge.

Gräsel E, Biehler J, Schmidt R, Schupp W. (2005)

OBJECTIVE:
An intensified transition concept between neurological inpatient rehabilitation and home care was investigated for effects on the functional status of stroke patients and the physical and emotional health of their carers.
DESIGN:
Controlled clinical trial allocating patients to intervention group (intensified transition on ward II) or control group (standard transition on ward I); patients were allocated to whichever ward had a vacancy. Follow-up assessment was carried out six months after discharge.
SUBJECTS:
Seventy-one patients and their family carers were included, of which nine cases dropped out. Therefore 62 stroke patients with persisting disability and their family carers were available for assessment at follow-up--33 patients in the intervention group, 29 patients in the control group.
INTERVENTION:
The intensified transition concept consisted of therapeutic weekend care, bedside teaching and structured information for relatives during the second phase of the rehabilitation.
MAIN MEASURES:
Patients were assessed with the Barthel Index, Functional Independence Measure, Ashworth Spastic Scale, Frenchay Arm Test, and Timed Up and Go Test. The carers completed SF-36, and were assessed using the Giessen Symptom List, Depression Scale and Burden Scale for Family Caregivers.
RESULTS:
The intensified transition did not lead to significant change in the functional status of the patients or in the physical and emotional health of the family carers. Within the first four weeks after discharge, the patients in the intervention group had fewer new illnesses. In the observation period the use of outpatient care services was more frequent in the intervention group than in the control group.
CONCLUSION:
Even though there are few differences of moderate intensity between the two groups the intensified transition programme does not affect either the functional status of the stroke patients or the health of the carers.

Intervention studies for caregivers of stroke survivors: a critical review

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

The objective of this review was to evaluate the effectiveness of different types of intervention programs for caregivers of stroke patients. A systematic search using Medline, PsychINFO, AMED and CINAHL till March 2003 was carried out and 22 studies were identified. Four types of support programs could be studied: providing specialist services, (psycho)education, counselling and social support by peers. Many different outcome domains and a variety of measures were used. Ten studies reported positive results on one or more outcome domains: reduction of depression (two studies) and burden (one), improvement of knowledge on stroke (five), satisfaction with care (one), family functioning (one), quality of life (three), problem solving skills (two), social activities (two), and social support (one). Three studies reported a negative result on caregiver outcome. We could not identify sufficient evidence to confirm the efficacy of interventions but counselling programs (3 out of 4) appear to have the most positive outcome.

Livet en gång till. En ryggmärgsskadad möter svensk handikappolitik

Brusén, Peter (2005)

Peter Brusén berättar i boken om sin kamp mot smärtan, sorgen och hur en svår kris kunde vändas till ett nytt oberoende liv. Författaren är chef för Socialstyrelsens handikappenhet och har före olyckan bland annat utvärderat handikappreformen. Olyckan har gett honom ett unikt "dubbelseende" som expert och idag också som en person med ett svårt funktionshinder. Han skildrar möten med vården, rehabiliteringen, handikappomsorgen och försäkringskassan. Boken ger kunskaper om bland annat behovsbedömning, handläggning och hur attityder påverkar dina handlingar.
Professor Johan Cullberg har skrivit bokens förord och Handikappombudsmannen Lars Lööw en avslutning.
Boken vänder sig till alla som arbetar inom vård, rehabilitering, handikappomsorg eller som i egenskap av politiker, handläggare eller chef möter människor med svåra funktionshinder. Men boken vänder sig i lika hög grad till alla som själv har ett funktionshinder eller är anhörig.

Livstillfredsställelse hos äldre, särskilt med nedsatt funktionsförmåga samt informella vårdare. I relation till hälsa, självkänsla, sociala och ekonomiska resurser i ett svenskt och europeiskt perspektiv (Akad. Avh.)

Borg, C (2005)

I relation till hälsa, självkänsla, sociala och ekonomiska resurser i ett svenskt och europeiskt perspektiv. Knowledge of factors contributing to life satisfaction among older people is needed, both in the context of those with reduced self-care capacity and among healthy older people and those providing help to others. Such knowledge may be helpful in developing primary and secondary interventions. The overall aim of this thesis was to investigate life satisfaction and its relation to factors such as physical and mental health and social and financial resources among people (60?89 years old) with and without reduced self-care capacity in six European countries, and among informal caregivers (50?89 years old) in Sweden. The aim was further to investigate the extent, need and type of support provided or desired among informal caregivers. This is part of the cross-national European Study of Adults? Wellbeing (ESAW) including six European countries N=12 478 (the Netherlands, Luxemburg, Italy, Austria, UK and Sweden). The Older Americans? Resources Schedule (OARS), Life Satisfaction Index Z (LSIZ) and Rosenberg self-esteem scale were used. Study I comprised 522 people (65?89 years old) with reduced self-care capacity, study II comprised 151 informal caregivers with a high caregiving extent, 392 with a low caregiving extent and 1258 non-caregivers from the Swedish sample. In study III 2195 people with reduced self-care countries. The data were analysed by descriptive and inferential statistics using non-parametric statistics, logistic and linear regression. Low life satisfaction (LSIZ) was related to higher age, being a woman, high degree of reduced self-care capacity, living in special accommodations, feeling lonely and poor financial resources. Feeling lonely, reduced self-care capacity, feeling worried, poor health and poor financial resources in relation to needs predicted low life satisfaction (Paper I). Frequent caregivers with a high extent of caregiving had lower LSIZ than those with less frequent caregiving and noncaregivers, while no differences were found between less frequent caregivers and non-care caregivers in LSIZ. Lower LSIZ was associated with not being employed, low social resources, not refreshed after a night's sleep, poor health, and frequent caregiving (Paper II). In paper III it was found that there were differences as well as similarities in factors predicting LSIZ in that self-esteem and overall health were important in all countries among older people with reduced self-care capacity and reduced self care capacity in three of six countries, whilst in paper IV four factors were found to be common in all ESAW countries. The factors were social resources, financial resources, feeling greatly hindered by health problems and low self-esteem. Factors of importance for life satisfaction thus seem to differ depending on the personal situation and social and political system. These differences should be taken into account when outlining and providing preventive, rehabilitative and support for these groups.

Maternal Unresolved Attachment Status Impedes the Effectiveness of Interventions With Adolescent Mothers

MORAN, G., PEDERSON, D. R. & KRUPKA, A. (2005)

Children of adolescent mothers are at risk for a variety of developmental difficulties. In the present study, the effectiveness of a brief intervention program designed to support adolescent mothers' sensitivity to their infants' attachment signals was evaluated. Participants were adolescent mothers and their infants who were observed at 6, 12, and 24 months of age. The intervention conducted by clinically trained home visitors consisted of eight home visits between 6 and 12 months in which mothers were provided feedback during the replay of videotaped play interactions. At 12 months, 57% of the mother–infant dyads in the intervention group and 38% of the comparison group dyads were classified as secure in the Strange Situation. Seventy-six percent of the mothers in the intervention group maintained sensitivity from 6 to 24 months compared with 54% of the comparison mothers. Further analyses indicated that the intervention was effective primarily for mothers who were not classified as Unresolved on the Adult Attachment Interview.

Minding the money: A growing responsibility for informal carers.

Tilse C, Setterlund D, Wilson J, Rosenman L. (2005)

Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised -as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although 'minding the money' has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that 'minding the money' is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.

Narrative exposure therapy: A short-term intervention for traumatic stress disorders after war, terror, or torture

Schauer, E., Neuner, F. & Elbert, T. (2005)

This book is the first practical manual describing a new and successful short-term treatment for traumatic stress and PTSD called Narrative Exposure Therapy (NET). The manual provides both experienced clinicians and trainees with all the knowledge and skills needed to treat trauma survivors using this approach, which is especially useful in crisis regions where longer-term interventions are not possible. NET has been field tested in post-war societies such as Kosovo, Sri Lanka, Uganda, and Somaliland. Its effectiveness was demonstrated in controlled trials in Uganda and Germany. Single case studies have also been reported for adults and children. Three to six sessions can be sufficient to afford considerable relief. Part I of this manual describes the theoretical background. Part II covers the therapeutic approach in detail, with practical advice and tools. Part III then focuses on special issues such as dealing with challenging moments during therapy, defense mechanisms for the therapist, and ethical issues.

Normbrytande beteende i barndomen. Vad säger forskningen?

Andershed A-K, Andershed H. (2005)

Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling.

Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.

Normbrytande beteende I barndomen. Vad säger forskningen?

Andershed A-K & Andershed H. (2005)

Prognosen för barn som tidigt, före tolv års ålder, börjar med brott och annat normbrytande beteende är dyster. Jämfört med dem som debuterar först i tonåren är det normbrytande beteendet hos dessa individer ofta allvarligare och mer aggressivt. De fortsätter dessutom i högre grad med sitt normbrytande beteende som vuxna. Att hantera denna grupp medför omfattande kostnader för samhället och det finns både humana och ekonomiska vinster att göra med ökad kunskap, tidiga förebyggande insatser och behandling. Ambitionen med denna bok är att göra internationell forskning i ämnet tillgänglig för en bredare publik. Här presenteras bland annat forskning om diagnostisering, förekomst, orsaks- och riskfaktorer, prognos för framtida problem, samt effektiv prevention och behandling av normbrytande beteende bland barn. Boken vänder sig främst till verksamma inom barn- och ungdomspsykiatri, socialtjänst och skola samt till forskare och studenter inom sociala och beteendevetenskapliga högskoleutbildningar, t.ex. socionom- och psykologprogram.

När andra sover : hur sömnsvårigheter hos barn med funktionshinder påverkar familjens liv

Stenhammar, Ann-Marie m.fl. (2005)

Riksförbundet för rörelsehindrade barn och ungdomar, RBU, drev projektet "Läggdags" och denna bok är ett resultat av projektet. Den beskriver resultaten av en enkätundersökning som besvarades av femhundra familjer. Många av föräldrarna är konstant trötta, men studien visar att föräldrarna kan få tillbaka sin nattsömn om barnen och de själva får bra stöd. I boken berättar föräldrarna vilket stöd de behöver.

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

Kröger T, Sipilä J, (eds). (2005)

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

Parent stress management training for attention-deficit/hyperactivity disorder

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

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

Parental death, shifting family dynamics, and female identity development

Cait, C. (2005)

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

Parents with learning difficulties in the child protection system: experiences and perspectives

Booth, T., & Booth, W. (2005)

The article documents the views and feelings of parents with learning difficulties as they reflect on their first-hand experience of going through care proceedings. Drawing on interviews conducted as part of a wider study of how cases involving mothers and fathers with learning difficulties are handled by the child protection system and the family courts, the authors provide a parental perspective on assessments, support, case conferences and the court process as well as the after-effects on the families themselves.

Participants' experiences of a support group intervention for family members during ongoing palliative home care

Milberg A, Rydstrand K, Helander L, Friedrichsen M. (2005)

The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.

Participants' experiences of a support group intervention for family members during ongoing palliative home care

Milberg A, Rydstrand K, Helander L, Friedrichsen M. (2005)

The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.

Patient/relative power in home-care nursing: a study of involvement and influence from the district nurses' point of view

Rydeman I, Törnkvist L, Gustafsson B. (2005)

The aim of the study was to describe district nurses 'views and experiences of patients ' and relatives ' involvement and influence in home-care nursing. Data were collected by means of semi-structured interviews with ten district nurses. The data analysis was interpreted by a hermeneutic method, and the SAUC model for confirming nursing was used as a theoretical framework. The findings revealed that the district nurses' views of human being, and their need to control the home-care situation as experts, were decisive factors for patient/relative power and non power in home-care nursing. The preconditions for patient/relative power, according to the district nurses, were related to whether patients/relatives felt motivated to co-operate, expressed their own wishes, and had competence. Some significant preconditions were required for the district nurses to support patient/relative power i.e., that the district nurses had patient/relative involvement and influence as an explicit nursing goal and believed that it improved home care nursing. Conclusion, this study indicates the importance of the district nurses ' awareness about their own view of human being, their attitudes on patient/relative power and their individual strategies and competence to support the patients/relatives involvement and influence in home- care nursing.

Planeringsinstrument för anhörigstöd. Artikelnr 2005-123-32

Socialstyrelsen (2005)

Detta arbete har syftat till att utveckla och pröva ett instrument för planering, uppföljning och utvärdering av stöd till anhörigvårdare. Arbetet har genomförts i Sverige och England och bygger på tidigare forskning avseende anhörigstöd, brukarmedverkan och partnerskap vid ÄldreVäst Sjuhärad, Högskolan i Borås och Universitetet i Sheffield. Instrumentet benämns COAT (Carers´ Outcome Agreement Tool).

Det färdiga instrumentet består av fyra frågeformulär och baseras på områden identifierade som viktiga av anhöriga som vårdar en närstående. Varje formulär innehåller ett antal påståenden som den anhöriga i diskussion med den som svarar för planeringen får möjlighet att värdera. Till varje område hör en stödplan för planering av åtgärder, uppföljning och utvärdering av den överenskomna hjälpen. En användarguide som vänder sig till de anhöriga och en manual som vänder sig till vård- och omsorgspersonalen har utarbetats.

Omfattande konsultationer i form av fokusgrupper med anhöriga och vård- och omsorgspersonal har använts för att arbeta fram instrumentet. Instrumentet har prövats i tre svenska kommuner, Göteborg, Ulricehamn och Härnösand, av vård- och omsorgspersonal med erfarenhet av anhörigstöd. Efter varje samtal med anhöriga dokumenterades hur instrumentet hade fungerat och hur anhöriga och de själva upplevt samtalet samt förslag på förbättringar. Uppföljande telefonintervjuer genomfördes med de anhöriga och fokusgruppsintervjuer genomfördes med vård- och omsorgspersonalen.

Testarbetet visade att majoriteten av anhörigvårdarna upplevde hembesöket och möjligheten att få tala om sin situation som mycket positivt. De kände sig involverade och lyssnade till. Personalen uppgav att de fick ny kunskap och nya insikter även om det var anhörigvårdare som de känt länge. De synpunkter som framkom har åtgärdats i det instrument som medföljer denna rapport. Anhörigvårdarna och personalen som deltagit i utvecklingsarbetet bedömer nu att instrumentet är färdigt att användas.

Det stora intresse och positiva gensvar som framkommit från alla berörda grupper under projektets gång talar för att det finns en ökande vilja att möta anhörigvårdare där de är och att arbeta tillsammans med dem. Planeringsinstrumentet för anhörigstöd, COAT, kan vara till stor nytta i ett sådant arbete.

COAT-materialet är fritt att använda efter registrering på www.aldrevast.hb.se

Positive parenting as a mediator of the relations between parental psychological distress and mental health problems of parentally bereaved children

Kwok, O., Haine, R.A., Sandler, I.N., Ayers, T.S., Wolchik, S.A. & Tein, J. (2005)

This study investigated a positive parenting composite of multiple measures of warmth and consistent discipline as a mediator of the relations between surviving parents' psychological distress and parentally bereaved children's mental health problems using both cross-sectional and prospective longitudinal models. The study included 214 bereaved children ages 7 to 16 and their surviving parent or current caregiver. A multirater, multimethod measurement model of positive parenting was developed. Although the mediational model was supported by analysis of the cross-sectional data, it was not supported in the 3-wave longitudinal model. However, the longitudinal model did find a significant path from positive parenting at Wave 2 to child mental health problems 11 months later at Wave 3, controlling for stability in child mental health problems. Implications for understanding the development of mental health problems of parentally bereaved children are discussed.

Predicting transitions in the use of informal and professional care by older adults

Geerlings, S. W., (2005)

To prepare the care system for a rising population of older people it is important to understand what factors predict the use of care. This paper reports a study of transitions in use of informal and professional care using Andersen-Newman models of the predictive predisposing, enabling and need factors. It draws on Longitudinal Ageing Study Amsterdam data on care use and contextual factors. Data were collected at 3-yearly intervals from a random sex- and age-stratified population-based sample of adults aged 55-85. In summary, findings for those who initially did not receive care were that almost one-third received some kind 3 years later, most provided by informal carers. Need factors were important predictors of most transitions, and predisposing and enabling factors, such as age, partner status and income also played a role. On the relationship between informal and professional care, evidence was found for both 'compensatory processes (informal substitutes for professional care) and 'bridging processes' (informal care facilitates professional care). In view of the increasing discrepancy between the demand for professional care and supply, the significant impact of predisposing and enabling factors offers opportunities for intervention.

Prevalence of serious mental disorder in 7000 refugees resettled in western countries: a systematic review

Fazel. (2005)

BACKGROUND:
About 13 million people are classified as refugees worldwide, and many more former refugees have been granted citizenship in their new countries. However, the prevalence of post-traumatic stress disorder, major depression, or psychotic illnesses in these individuals is not known. We did a systematic review of surveys about these disorders in general refugee populations in western countries.

METHODS:
We searched for psychiatric surveys that were based on interviews of unselected refugee populations and that included current diagnoses of post-traumatic stress disorder, major depression, psychotic illnesses, or generalised anxiety disorder. We did computer-assisted searches, scanned reference lists, searched journals, and corresponded with authors to determine prevalence rates of these mental disorders and to explore potential sources of heterogeneity, such as diagnostic criteria, sampling methods, and other characteristics.

FINDINGS:
20 eligible surveys provided results for 6743 adult refugees from seven countries, with substantial variation in assessment and sampling methods. In the larger studies, 9% (99% CI 8-10%) were diagnosed with post-traumatic stress disorder and 5% (4-6%) with major depression, with evidence of much psychiatric comorbidity. Five surveys of 260 refugee children from three countries yielded a prevalence of 11% (7-17%) for post-traumatic stress disorder. Larger and more rigorous surveys reported lower prevalence rates than did studies with less optimum designs, but heterogeneity persisted even in findings from the larger studies.

INTERPRETATION:
Refugees resettled in western countries could be about ten times more likely to have post-traumatic stress disorder than age-matched general populations in those countries. Worldwide, tens of thousands of refugees and former refugees resettled in western countries probably have post-traumatic stress disorder.

Prevention programmes for children of problem drinkers: A review.

Cuijpers P. (2005)

It is well established that children of problem drinkers have an increased risk of developing mental health problems, including drinking and drug misuse problems, depression, eating disorders, conduct disorders, and delinquency. However, compared to the hundreds of studies that have examined the effects of parental problem drinking on their children, the genetics of problem drinking, and the physical and mental problems of these children, it is disappointing that so few studies have explored the possibilities of prevention. Despite all the research on children of problem drinkers, we have no usable operationalizations of what problem drinking is, or when a child can be defined as a child of a problem drinker. Furthermore, no valid screening or severity assessment instruments are available; there is no solution for the ethical dilemma of the need to involve parents while these parents are at the same time the problem; very few theory-driven prevention programmes have been developed; very little is known about protective factors that could be the focus of prevention programmes; and we have no programmes that can be considered to be 'evidence based'. This paper describes these problems, presents an overview of the prevention research in this area, and gives some directions for future research.

Psykiatri eller inte? Radikal psykiatrikritik under 1960- och 1970-talen

Svensson, Tommy (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.

Randomized controlled trial of a brief intervention for increasing participation in parent management training

Nock, M. K. and A. E. Kazdin (2005)

Evidence-based treatments exist for a range of child and adolescent behavior problems; however, effects are often limited by poor treatment attendance and adherence. The authors developed and evaluated the efficacy of a brief (5 to 45 min) intervention designed to increase treatment attendance and adherence in a sample of 76 parents referred for treatment of their child's oppositional, aggressive, and antisocial behavior. The results of this randomized controlled trial showed that parents who received this brief intervention had greater treatment motivation, attended significantly more treatment sessions, and had greater adherence to treatment according to both parent and therapist report. This study provides researchers and clinicians with a brief and efficacious method of increasing motivation, attendance, and adherence for treatment.

Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations

Wehmeyer, M. L. (2005)

Although some progress has been made, the belief that students with severe cognitive and multiple disabilities will not or cannot become self-determined remains a barrier for many such students. This article revisits topics that were identified in Wehmeyer (1998) as contributing to this problem, with a particular focus on definitional issues pertaining to self-determination and control. In light of this discussion, a modified definition of self-determination is proposed and the importance for moving in this direction is discussed.

Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations

Wehmeyer, M. L. (2005)

Although some progress has been made, the belief that students with severe cognitive and multiple disabilities will not or cannot become self-determined remains a barrier for many such students. This article revisits topics that were identified in Wehmeyer (1998) as contributing to this problem, with a particular focus on definitional issues pertaining to self-determination and control. In light of this discussion, a modified definition of self-determination is proposed and the importance for moving in this direction is discussed.

Siblings of Children With Disabilities: Research Themes

Stoneman Z. (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

Siblings’ needs and issues when a brother or sister dies of cancer

Nolbris, M., & Hellstrom, A-L. (2005)

Abstract
To explore siblings'needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had not felt involved in the dying process with the exception of the terminal period. The siblings stated that their dissatisfaction would have been reduced if doctors and nurses had provided continuous information and support. Loneliness, anxiety, anger, and jealousy were common feelings that they expressed. Friends and school were important to the siblings, representing a normal environment free from the domination of sickness. The siblings also expressed that they needed to mourn in their own way including periods of time when they did not mourn. The absence of the dead sibling was felt particularly during family celebrations. The siblings continued to have special memories and objects, and all still included the dead sibling as a member in the family.

Stop to Listen: Findings from the ACT Young Carers Research Project

Moore, T. (2005)

This research project, funded by the ACT Department of Disability, Housing and
Community Services through the Carers Recognition Grants Program, sought to discover
more about the lived experiences, needs and goals of young carers in the ACT in an
attempt to identify more responsive and accessible service delivery.
For the purposes of this research report, young carers were defined as:
children and young people under the age of 18 who care for a family member
with an illness or disability, or a drug or alcohol or mental health issue.
It has been shown that caring can be a positive experience for children and young people
when they receive adequate levels of support but that when unsupported, young carers
can experience significant physical, emotional, social, educational, and financial hardship.
It is discomforting, therefore, to find that most research has shown that for a range of
political and practical reasons, many young carers and their families are sustained in
positions of significant disadvantage and suffer on without the supports and services that
they both need and deserve.
While there has been considerable discussion about the service needs and experiences of
carers, generally, there has been little research focusing on the specific needs of young
carers and their access to appropriate, responsive and quality services.
This has been for a number of reasons. Firstly, viewed primarily as incapable, children
and young people's roles as social citizens are discredited, which leads to a situation
where communities either disbelieve or problematise their care responsibilities and fail to
afford them the support they need. Secondly, afraid of stigma, inappropriate intervention
or shame, many families have felt compelled to hide young caring from the eyes of the
community. Thirdly, young caring raises a moral and economic tension – do we condone
young caring (including its negative impacts) and save the community significant expense
or do we prohibit it and further problematise those who assume such roles?
This study attempted to navigate its way through this potential minefield by
acknowledging that young caring is a natural, potentially life-affirming and skilldeveloping
experience and by seeking out children and young people's own reflections on
their roles and how they, themselves, see caring impacting on their lives.

Stöd och samverkan kring föräldrar med intellektuella begränsningar – föräldrars och yrkesverksammas perspektiv.

Olson, Lena & Springer, Lydia (2005)

Magisteruppsats

Syftet med föreliggande studie var att skaffa fram ett underlag för att från habiliteringens sida
kunna vara ett adekvat stöd till professionella, när det gäller bemötande av föräldrar, särskilt
mammor, med intellektuella begränsningar.
För detta syfte behövde vi kartlägga de professionellas inställning och attityder till föräldrar
med intellektuella begränsningar, men också förmedla den bild som mammorna/föräldrarna
har på det stöd de får. I en kvalitativ studie intervjuades åtta mammor med intellektuella
begränsningar om deras syn på det stöd de får. En enkätstudie ställd till professionella gav
kännedom om olika verksamheters arbetssätt och utbud av stöd till familjer där en eller båda
föräldrarna har intellektuella begräsningar. I resultatdelen speglades informationen från
mammorna mot enkätsvaren.
Samverkansaspekter beaktades särskilt noga. Studien utgick från följande frågor:
Vilka erfarenheter och vilken inställning har de professionella till föräldrar med intellektuella
begränsningar? Hur kan mammornas egna synpunkter på den hjälp de får bidra till förståelse
för familjernas behov? Vilket stöd finns idag, hur skulle det eventuellt behöva förstärkas och
vilken roll kan habiliteringen ha?
De båda undersökningarna gav samstämmiga resultat när det gäller att beskriva
stödinsatsernas omfattning och mångfald. En annan aspekt som belystes från ömse håll var
behovet av utökat tidsutrymme för kontakt. Denna samstämmighet kunde utgöra grund för
fortsatt arbetsallians. Vi konstaterade vidare att det fanns behov av ett kunskapscenter som
kunde bidra till lättillgänglig information för både professionella och familjer. Professionella
uttryckte önskan om att lära mer avseende funktionshinder och dess konsekvenser särskilt i
kombination med föräldraskap. Behov av utökad och rutinmässig samverkan framkom mellan
de instanser som möter föräldrar med intellektuella begränsningar och deras barn. Slutligen
konstaterades en naturlig roll för habiliteringen, framför allt avseende fyra aspekter. Det
gällde förmedling av kunskap om funktionshinder, liksom insatser av preventiv art,
nätverksbyggande och samordnarfunktion.

Symbol communication in special schools in England: the current position and some key issues

Abbott, C., & Lucey, H. (2005)

In this article, originally submitted to B J S E's Research Section, Chris Abbott of King's College, London, and Helen Lucey of the Open University report on the outcomes of a survey of special schools in England. The aim of the research, funded by the Nuffield Foundation, was to understand the nature and extent of symbol use for communication and literacy. A questionnaire was used to collect data on topics including: the types of symbols in use; the methodologies operated; ownership of symbol choice; and agreed policies within and outside school. The researchers had an excellent response in this important survey, undertake n after a period of rapid growth in symbol use in special schools and elsewhere. Chris Abbott and Helen Lucey provide a discussion of the results of their survey and of the issues that arise from the findings and the many comments added by respondents. They close their article with a call for further detailed research, both in the UK and in co-operation with practitioners in other countries, into the ways in which symbol use can meet the needs of learners.

Ta ansvar för samverkan: helhetsperspektiv på samhällsstödet till barn och unga med funktionshinder. En idéskrift

Stenhammar, Ann-Marie & Palm, Olle (2005)

Den här skriften vill visa hur alla de olika insatser som görs för barn och unga med funktionshinder kan samverka för att vara väl sammansatta, komma i rätt tid och överensstämma med barnets och ungdomens faktiska behov vid det aktuella tillfället. För att det ska vara möjligt måste alla de verksamheter och professionella som ger stöd se helheten i barnets situation, den helhet som vardagen utgör. Med ett sådant perspektiv och med en förståelse för den egna verksamhetens roll i helheten, finns en grund för att ta ansvar för samverkan.

The age-dependent decline of attention deficit hyperactivity disorder: a meta-analysis of follow-up studies

Faraone, S., Biederman, J., & Mick, E. (2005)

BACKGROUND:
This study examined the persistence of attention deficit hyperactivity disorder (ADHD) into adulthood.
METHOD:
We analyzed data from published follow-up studies of ADHD. To be included in the analysis, these additional studies had to meet the following criteria: the study included a control group and it was clear from the methods if the diagnosis of ADHD included subjects who did not meet full criteria but showed residual and impairing signs of the disorder. We used a meta-analysis regression model to separately assess the syndromatic and symptomatic persistence of ADHD.
RESULTS:
When we define only those meeting full criteria for ADHD as having 'persistent ADHD', the rate of persistence is low, approximately 15% at age 25 years. But when we include cases consistent with DSM-IV's definition of ADHD in partial remission, the rate of persistence is much higher, approximately 65%.
CONCLUSIONS:
Our results show that estimates of ADHD's persistence rely heavily on how one defines persistence. Yet, regardless of definition, our analyses show that evidence for ADHD lessens with age. More work is needed to determine if this reflects true remission of ADHD symptoms or is due to the developmental insensitivity of diagnostic criteria for the disorder.

The distribution of the common mental disorders: social inequalities in Europe

Fryers, T., Melzer, D., Jenkins, R., & Brugha, T. (2005)

Background
The social class distribution of the common mental disorders (mostly anxiety and/or depression) has been in doubt until recently. This paper reviews the evidence of associations between the prevalence of the common mental disorders in adults of working age and markers of socio-economic disadvantage.

Methods
Work is reviewed which brings together major population surveys from the last 25 years, together with work trawling for all European population studies. Data from more recent studies is examined, analysed and discussed. Because of differences in methods, instruments and analyses, little can be compared precsiely, but internal associations can be examined.

Findings
People of lower socio-economic status, however measured, are disadvantaged, and this includes higher frequencies of the conditions now called the 'common mental disorders' (mostly non-psychotic depression and anxiety, either separately or together). In European and similar developed populations, relatively high frequencies are associated with poor education, material disadvantage and unemployment.

Conclusion
The large contribution of the common mental disorders to morbidity and disability, and the social consequences in working age adults would justify substantial priority being given to addressing mental health inequalities, and deprivation in general, within national and European social and economic policy.

The genetics of addictions: uncovering the genes

Goldman, D., Oroszi, G., & Ducci, F. (2005)

The addictions are common chronic psychiatric diseases that today are prevented and treated using relatively untargeted and only partially effective methods. The addictions are moderately to highly heritable, which is paradoxical because these disorders require use; a choice that is itself modulated by both genes and environment. The addictions are interrelated and related to other psychiatric diseases by common neurobiological pathways, including those that modulate reward, behavioural control and the anxiety or stress response. Our future understanding of addictions will be enhanced by the identification of genes that have a role in altered substance-specific vulnerabilities such as variation in drug metabolism or drug receptors and a role in shared vulnerabilities such as variation in reward or stress resiliency.

The impact of a nurse-led support and education programme for spouses of stroke patients: a randomized controlled trial.

Larson J, Franzen-Dahlin A, Billing E, Arbin M, Murray V, Wredling R. (2005)

AIMS AND OBJECTIVES:
The aim of the present study was to determine the impact of a nurse-led support and education programme for improving the spouses' perceived general quality of life, life situation, general well-being and health state.
BACKGROUND:
Stroke is a disease with great consequences for the patients and their families. The spouses often feel obligated to care for the patient, providing psychological and physical support and having to cope with the patient's physical and cognitive impairments. This might lead to increased problems, as family members struggle to adapt to their new roles and responsibilities.
DESIGN AND METHODS:
Longitudinal, randomized controlled trial. One hundred spouses were randomly assigned to intervention or control groups, 50 in each group. The intervention group participated in a support and education programme, six times during six months, led by stroke specialist nurses. Both groups were followed for 12 months.
RESULTS:
No significant differences were found, between intervention and control groups, over time. In the sub analyses, we found that the group attending 5-6 times had a significant decrease in negative well-being and increased quality of life over time, while the group attending fewer times had a significant decrease in positive well-being and health state, similar to the control group, which also had a significant decrease in negative and general well-being.
CONCLUSIONS:
A support and education programme might have a positive effect on spouses' well-being, on condition that they attend at least five times.
RELEVANCE TO CLINICAL PRACTICE:
To facilitate the spouses' role as informal caregivers to the stroke patients, further development of the support and education programme used in the present study is needed, including empowerment approach and implementation of coping strategies.

The importance of parenting in the development of disorganized attachment: evidence from a preventive intervention study in adoptive families

JUFFER, F., BAKERMANS-KRANENBURG, M. J. & VAN, I. M. H. (2005)

BACKGROUND:
As infant disorganized attachment is a serious risk factor for later child psychopathology, it is important to examine whether attachment disorganization can be prevented or reduced.
METHOD:
In a randomized intervention study involving 130 families with 6-month-old adopted infants, two attachment-based intervention programs were tested. In the first program, mothers were provided a personal book, and in the second program mothers received the same personal book and three home-based sessions of video feedback. The third group did not receive intervention (control group).
RESULTS:
The intervention with video feedback and the personal book resulted in enhanced maternal sensitive responsiveness (d=.65). Children of mothers who received this intervention were less likely to be classified as disorganized attached at the age of 12 months (d=.46), and received lower scores on the rating scale for disorganization than children in the control group (d=.62). In the book-only intervention group children showed lower disorganization ratings compared to the control group, but no effect on the number of infants with disorganized attachment classifications was found.
CONCLUSION:
Our short-term preventive intervention program with video feedback and a book lowered the rate of disorganized attachment. The effectiveness of our intervention documents the importance of parenting in the development of infant attachment disorganization.

The last 3 months of life: care, transitions and the place of death of older people

Klinkenberg, M. (2005)

Many older people die in hospitals, whereas research indicates that they would prefer to die at home. Little is known about the factors associated with place of death. The aim of the present study was to investigate the care received by older people in the last 3 months of their life, the transitions in care and the predictors of place of death. In this population-based study, interviews were held with 270 proxy respondents to obtain data on 342 deceased participants (79% response rate) in the Longitudinal Aging Study Amsterdam. In the last 3 months of life, the utilisation of formal care increased. Half of the community-dwelling older people and their families were confronted with transitions to institutional care, in most cases to hospitals. Women relied less often on informal care only, and were more dependent than men on institutional care. For people who only received informal care, the odds of dying in a hospital were 3.68 times the odds for those who received a combination of formal and informal home care. The chance of dying in a hospital was also related to the geographical region. The authors argue that future research is needed into the association that they found in the present study, i.e. that decedents who received both formal and informal care were more likely to die at home. In view of the differences found in geographical region in relation to place of death, further investigation of regional differences in the availability and accessibility of care is indicated.

The Role of Marital Discord and Parenting in Relations between Parental Problem Drinking and Child Adjustment

PS, Cummings EM, Davies PT. (2005)

BACKGROUND:
Research suggests that children exposed to parental drinking problems are at risk for maladjustment. However, the potential impact of drinking problems in a community sample and the processes involved in the relationship between parental drinking and child outcomes have rarely been examined.
METHOD:
A community sample of 235 mothers and fathers of kindergarten children completed measures of problem drinking symptoms, family functioning and child adjustment.
RESULTS:
Model tests indicate that problem drinking was associated with greater marital conflict, and that marital conflict was related to ineffective parenting which was in turn related to poorer child adjustment.
CONCLUSIONS:
Even in a community sample, parental problem drinking behaviors are associated with reduced family functioning that relates to child outcomes.

The Role of Marital Discord and Parenting in Relations between Parental Problem Drinking and Child Adjustment

Keller PS, Cummings EM, Davies PT. (2005)

Background:  Research suggests that children exposed to parental drinking problems are at risk for maladjustment. However, the potential impact of drinking problems in a community sample and the processes involved in the relationship between parental drinking and child outcomes have rarely been examined.

Method:  A community sample of 235 mothers and fathers of kindergarten children completed measures of problem drinking symptoms, family functioning and child adjustment.

Results:  Model tests indicate that problem drinking was associated with greater marital conflict, and that marital conflict was related to ineffective parenting which was in turn related to poorer child adjustment.

Conclusions:  Even in a community sample, parental problem drinking behaviors are associated with reduced family functioning that relates to child outcomes.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

The role of the family in preventing and intervening with substance use and misuse: a comprehensive review of family interventions, with a focus on young people

Velleman RDB, Templeton LJ, Copello AG (2005)

The family plays a key part in both preventing and intervening with substance use and misuse, both through inducing risk, and/or encouraging and promoting protection and resilience. This review examines a number of family processes and structures that have been associated with young people commencing substance use and later misuse, and concludes that there is significant evidence for family involvement in young people's taking up, and later misusing, substances. Given this family involvement, the review explores and appraises interventions aimed at using the family to prevent substance use and misuse amongst young people. The review concludes that there is a dearth of methodologically highly sound research in this area, but the research that has been conducted does suggest strongly that the family can have a central role in preventing substance use and later misuse amongst young people.

Vara anhörig: bok för anhöriga till psykiskt sjuka

Moberg, Åsa (2005)

Hur är det att vara anhörig till en psykiskt sjuk människa? Var finner jag hjälp och stöd?

Det finns oändliga mängder kunskap, också hos behandlare och ansvariga myndigheter, om hur viktigt det är att lyssna till de anhöriga. Gång på gång betonas vikten av ett gott samarbete mellan psykiatrin och de sjukas sociala nätverk. Ändå fungerar detta samarbete sällan bra i praktiken.

I Vara anhörig beskriver Åsa Moberg, författare till den mycket uppmärksammade Adams bok, med utgångspunkt i enskilda fallbeskrivningar och lokala vårdformer, olika förhållningssätt för patienter, anhöriga och närstående. Här finns också berättelser om nytänkande och fungerande vårdformer.

Depression är den vanligaste psykiska sjukdomen i Sverige.Det är en sjukdom som i hög grad påverkar alla närstående. Förändringar i vården är nödvändiga och för det behövs gemensamma mål. Ändå glöms de anhöriga ofta bort.

Idag tycks de psykiatriska diagnosernas antal tillväxa i ungefär samma takt som mängden människor med psykiska lidanden. Sker allt detta diagnosticerande på bekostnad av det stöd, som behövs för att människor med psykiska funktionshinder och deras anhöriga ska klara vardagen? Det tror Åsa Moberg.

1900-talet var det århundrade när de sjukas, "brukarnas", röster började höras. 2000-talet måste bli den tid när de anhöriga äntligen tas på allvar.

Varför söker inte anhörigvårdare stöd? Rapport från FoU-Jämt, 2005:1.

Göransson, S. (2005)

Trots att anhörigvården synliggjorts under senare år är det fortfarande många anhörigvårdare som inte är kända av kommunen och många som inte söker stöd. För att ta reda på orsaken till ovanstående förhållande har jag djupintervjuat sexton anhörigvårdare. Informationsbrist är en orsak, många vet inte att det finns hjälp att få, vadsom finns eller hurman ansöker. Att det är omständligt, att man inte orkar eller att den som vårdas inte vill ha hjälp från någon utomstående är annat som framkommit. Främst handlar det dock om att man vill klara sig själv. Anhörigvård handlar om två parter, den vårdbehövande och den friske parten – anhörigvårdaren – båda parter måste vara beredda att "öppna upp" hemmet för vårdpersonal för att hjälp i hemmet ska kunna påbörjas. Den personliga integriteten påverkas. Stöd utanför hemmet eller från den egna familjen är följaktligen det som anhörigvårdare främst önskar. Lojalitet mot den närstående gör många gånger att anhörigvårdaren utstår mer än vad som verkar vara rimligt att klara men... " – hur långt sträcker sig egentligen det äktenskapliga löftet? "Anhörigvårdare behöver sökas upp och motiveras till att söka avlösning. Givetvis bör också utbudet anpassas efter vad anhörigvårdarna verkligen efterfrågar." – Vad är då ett bra anhörigstöd? "Kanske inte bara det som erbjuds av det offentliga. När en make/maka drabbas av sjukdom kan den friske parten bli väldigt ensam om alltansvar i hemmet. Att då få hjälp med diverse praktiska vardagsgöromål kan vara ett stöd så gott som något annat. För att tillgodose detta är en utveckling av frivilligarbete liknande "Väntjänst" önskvärd.

Attention-deficit/hyperactivity disorder: Are we medicating for social disadvantage?

Efron D. (2006)

The diagnosis of attention-deficit/hyperactivity disorder (ADHD) is based on well defined criteria, which describe a number of symptoms. It is important to consider the context of the symptoms, in terms of the influence of the child's family and school. Although stimulant medications benefit selected children they may not benefit all children with symptoms of ADHD. The incidence of ADHD increases with social disadvantage. There is a potential danger of using stimulant medication alone to treat children with complex psychosocial problems, associated with social disadvantage, including Aboriginal children. We desperately need better training in the management of ADHD and better access to child psychiatrists.

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.

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.

Benjamin-Min mamma är speciell

Lazai Stefanie, Phol Stephan (2006)

En bok för barn som handlar om att leva med en förälder som har MS. Boken Benjamin ger föräldrar och barn möjlighet att läsa och diskutera tillsammans. Den berättar om hur det är att leva med en mamma som har MS och tar upp de många oförutsägbara sidorna av sjukdomen. Boken förklarar på ett enkelt sätt vad som händer med mamman och stöttar Benjamin känslomässigt. Detta skapar insikt och trygghet för Benjamin och han blir stolt över hur hans mamma övervinner de svårigheter hon ställs inför.

 

Beyond stroke: Description and evaluation of an effective intervention to support family caregivers of stroke patients.

Schure LM, van den Heuvel ETP, Stewart RE, Sanderman R, de Witte LP, Meyboom-de Jong B. (2006)

OBJECTIVE:
The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den Heuvel's previous effect study showed positive effects of the same intervention program, but unlike our present study differences between the two support variants could not be measured.
METHODS:
Of 257 family caregivers who were included and randomly assigned to an intervention variant or a control group, 127 family caregivers completed the intervention in either the group program or the home visiting program.
RESULTS:
Evaluation data showed that both intervention variants had been helpful and feasible, but home visit participants missed peer contact and follow-up contacts were missed in both intervention programs. In comparison to the home visiting program, the group program participants showed more benefit especially with respect to informational and emotional components. Caregivers' preference for type of intervention revealed that both types of intervention had its supporters. Those that preferred the group program could be clearly characterised: they were burdened, lived with a more psychologically handicapped relative, were using active coping strategies more frequently or lived in a region which is considered to be more sociable.
CONCLUSION:
The present study adds extensively to van den Heuvel's effect study with respect to discriminative aspects of group and home intervention programs and their respective benefits for specific family caregiver groups.
PRACTICE IMPLICATIONS:
In order to suitably match an intervention type with specific caregiver characteristics the intervention provider should utilize caregiver self-selection or undertake professional screening of caregiver burden. Telephone contacts should be offered in addition to the interventions.

By their own young hands: Delibirate self-harm and suicid ideas.

Hawton K, Rodham K, Evans E. (2006)

Self-harm in adolescents is an increasingly recognized problem, and there is growing awareness of the important role schools and health services can play in detecting and supporting those at risk. By Their Own Young Hand explores the findings of the first large-scale survey of deliberate self-harm and suicidal thinking in adolescents in the UK, and draws out the implications for prevention strategies and mental health promotion.

Six thousand young people were asked about their experiences of self-harm, the coping methods they use, and their attitudes to the help and support available. The authors identify the risk and protective factors for self-harm, exploring why some adolescents with suicidal thoughts go on to harm themselves while others do not, what motivates some young people to seek help, and whether distressed teenagers feel they receive the support they need. By Their Own Young Hand offers practical advice on how schools can detect young people at risk, cope with the aftermath of self-harm or attempted suicide, and develop training programmes for teachers. It also examines the roles of self-help, telephone helplines, email counselling, and walk-in crisis centres.

Packed with adolescents' own personal accounts and perspectives, this accessible overview will be essential reading for teachers, social workers and mental health professionals.

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.

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.

Conflict and repair in addiction treatment: An attachment disorder perspective

Flores PJ. (2006)

Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.

Death and suicide among former child and adolescent psychiatric patients

Engqvist, U. and P. A. Rydelius (2006)

BACKGROUND: Increased mortality rates among previous child and adolescent psychiatry (CAP) patients have been found in Scandinavian studies up to the 1980s. The suicide risk in this group has been estimated to be almost five times higher than expected. This article addresses two questions: Do Swedish CAP patients continue to risk premature death and what kind of information related to psychiatric symptoms and/or behavior problems can predict later suicide? METHODS: Hospital files, Sweden's census databases (including immigration and emigration) and administrative databases (including the Swedish Hospital Discharge register and the Persons Convicted of Offences register), and the Cause of Death register were examined to determine the mortality rate in a group of 1,400 former CAP inpatients and outpatients over a period of 12-33 years. Observed and expected numbers of deceased were calculated with the prospective method and the standardized mortality ratio (SMR) method. The relative risk or the risk ratio (RR) is presented with 95% confidence intervals (CIs). Significance level tests were made using two-by-two tables and chi-square tests. The Cox proportional-hazards regression model was used for survival analysis. RESULTS: Twenty-four males and 14 females died. Compared with the general population, the standardized mortality ratio in this group of CAP patients was significantly higher in both sexes. Behavioral problems, school problems, and co-morbid alcohol or drug abuse and criminality (including alcohol-related crimes) were found to be important predictors. Thirty-two deaths were attributed to suicide, intoxication, drug overdose, or accident; one patient died of an alcohol abuse-related disorder, and five patients died of natural causes. Suicide was the most common cause of death, but only 2 of these 19 cases were initially admitted for attempted suicide. CONCLUSION: We suggest that suicide and death prevention among CAP patients may not be a psychiatric issue per se but a future function of society's juvenile social-welfare investments and juvenile-delinquency prevention programs.

Det andra barnet. Föräldrars tankar kring sitt andra barn då deras första har ett funktionshinder

Wanker, Maria (2006)

Bakgrund till studien är ett behov och ett intresse att belysa den situation och de dilemman
som föräldrar har att förhålla sig till då deras första barn har ett funktionshinder och de vill
ha fler barn. Mitt intresse väcktes i samband med att jag träffade nyblivna
förstagångsföräldrar till barn med funktionshinder i mitt arbete på en samtalsmottagning
för anhöriga. Syftet med undersökningen är att få vidgad kunskap om föräldrarnas tankar
och erfarenheter i samband med deras andra graviditet.
Studien bygger på intervjuer med föräldrar utifrån frågor om hur de tänkte kring beslutet
om ett barn till, om graviditeten, om möjligheterna till fosterdiagnostik, hur de upplevde
förlossningen och om hur det var att bli föräldrar igen.
Ur intervjumaterialet framstod ett flertal dilemman som föräldrarna hade att ta ställning
till. Dessa berörde existentiella och etiska frågor bl.a. kring människovärde och
funktionshinder och svåra beslut kring fosterdiagnostik och abort i början av processen.
Genom föräldrarnas berättelser går ett stråk av sorg och graviditeterna präglades av oro.
Oron tog sig olika utryck men för flera fanns den kvar länge trots att barnet bedömts som
friskt. Oron relaterade i hög grad till hur det första barnets funktionshinder uppkommit
och gestaltade sig.
Att få ett friskt barn var för alla intervjuade en stor glädje och en revolutionerande
erfarenhet. Den innebar först och främst vetskapen om att det kunde gå bra. Den innebar
också att deras identitet som föräldrar kunde stärkas och relationerna till omvärlden
normaliseras.
Ett kvarstående dilemma för föräldrarna idag är deras kamp att få det stöd de behöver för
att hinna och orka med sina barn och ändå leva så normalt som möjligt. Ett annat dilemma
som alla de intervjuade delar är hur de ska kunna ge det andra barnet möjlighet att
utvecklas fritt och normalt, samtidigt som de hoppas att det ska komma att känna ansvar
för sitt syskon.

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.

Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods

van den Berg B, Brouwer W, van Exel J, Koopmanschap M, van den Bos G, Rutten F. (2006)

This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.

Ett reflexivt syskonskap. En studie om att växa upp tillsammans med fostersyskon

Nordenfors, Monica (2006)

Avhandling för doktorsexamen

The aim of this thesis is to describe and analyse how the natural children of foster carers experience growing up in a foster family. The intention was to gain knowledge about their everyday life through their own participation, and to make the research questions derive from their experiences. The Swedish research project "Growing Up With Foster Siblings" built on empirical material collected via focus groups (17 participants), discussion groups (16 partici- pants), a (web and postal) questionnaire (684 answers) and 8 qualitative interviews. The study follows the sociology of childhood and the young people are considered as social actors participating in interactions, activities and negotiations, which contribute to the construction of their social world. Children's competences as well as their constraints are explored. When a family becomes a foster family the whole family is affected, not in the least the natural children, who often take an active part in the fostering assignment. The young people's experiences vary to a great extent. Some describe their relationships with their foster siblings as an ordinary sibling relationship or as being friends. Some take responsibility and care for both their foster siblings wellbeing as well as for their parent's wellbeing. Several of them describe how they reflexively mould their own part in the interaction by focusing on the needs of other family members. A third of the young people in the study experiences a loss of time and attention from their parents. This theme has brought the analysis to the question of how the young people experience their position in the family. In the young people's descriptions it is noticeable how important the feeling of being able to affect their own situation, of being an actor, is. The young persons who have negative experiences (in groups and individual interviews mostly girls/women) have often described themselves as powerless, with no possibility of negotiating and affecting their situation. Many of the young people describe themselves as active and involved in processes through which relationships in the family are formed. There is no consensus as to their construction of how a child in a certain age should engage in caring activities. The young people are involved and implicated in processes that are complex and full of ambiguity. In line with theories of late modern society where sources of authority are localised within the individual and to negotiating processes, the children seem to be of the opinion that they are active agents who themselves decide what to take responsibility for or not. But they do this in a context. They live within a context where they are expected to behave according to certain conceptions of in what way a natural child to a parent who foster should act in relation to their foster siblings but also towards their parents. Expectations interlock with the active child who engages in processes through which social relationships are formed in the family.

Evaluation of a focused short-term preventive counseling project for families with a parent with cancer

Thastum, M., Munch-Hansen, A., Wiell, A., & Romer, G. (2006)

Twenty-four families participated in counselling for families with a parent with cancer (24 mothers, 17 fathers, and 34 children). Parents who received counselling were significantly more depressed before the counselling than a nonrandomized control group who did not receive counselling, but participated in another part of the project. For the parents, there was a significant decrease in depression and increase in family functioning scores from before to after the intervention. For the children, a significant pre- to post-decrease in depression scores was found. Changes in depression and family functioning were significantly correlated with the degree of counselling contentment. Reasons for seeking counselling were insecurity in relation to the children, problems with communication, high level of conflict, and change of roles. A number of themes appeared when parents and children described what they gained from the counselling: Confirmation in being a 'good-enough' parent, more understanding of emotions and reactions of other family members, more sense of intimacy and cohesion within the family, and normalization of own feelings.

Exploring visual-graphic symbol acquisition by pre-school age children with developmental and language delays

Barton, A., Sevcik, R., & Romski, M.. (2006)

The process of language acquisition requires an individual to organize the world through a system of symbols and referents. For children with severe intellectual disabilities and language delays, the ability to link a symbol to its referent may be a difficult task. In addition to the intervention strategy, issues such as the visual complexity and iconicity of a symbol arise when deciding what to select as a medium to teach language. This study explored the ability of four pre-school age children with developmental and language delays to acquire the meanings of Blissymbols and lexigrams using an observational experiential language intervention. In production, all four of the participants demonstrated symbol-referent relationships, while in comprehension, three of the four participants demonstrated at least emerging symbol-referent relationships. Although the number of symbols learned across participants varied, there were no differences between the learning of arbitrary and comparatively iconic symbols. The participants' comprehension skills appeared to influence their performance.

Family caregivers of persons with dementia : experiences of burden, satisfaction and psychosocial intervention

Andrén, S. (2006)

One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.

Family caregivers of persons with dementia : Experiences of burden, satisfaction and psychosocial intervention

Andrén, S. (2006)

One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.

Family Treatment Approaches for Depression in Adolescent Males

Pruitt, I. T. P. (2006)

Adolescent depression is a serious and common disorder. Though adolescent males are less likely to report depression than females, they have serious risks associated with the disorder, like suicide, future substance abuse, and illegal activity. Several gender differences have been observed among depressed adolescents and should be considered in assessment and treatment. Little efficacy research exists for family treatments of depression in adolescent males, though several approaches have been proposed. These approaches include Structural Family Therapy, Interpersonal Family Therapy, and Attachment-Based Family Therapy. These treatments have been found useful in clinical settings, but much more efficacy research is necessary. Adapted from the source document.

Frightened, threatening, and dissociative parental behavior in low-risk samples: Description, discussion, and interpretations

Hesse, E., & Main, M. (2006)

In 1990 we advanced the hypothesis that frightened and frightening (FR) parental behavior would prove to be linked to both unresolved (U) adult attachment status as identified in the Adult Attachment Interview and to infant disorganized/disoriented (D) attachment as assessed in the Ainsworth Strange Situation. Here, we present a coding system for identifying and scoring the intensity of the three primary forms of FR behavior (frightened, threatening, and dissociative) as well as three subsidiary forms. We review why each primary form may induce fear of the parent (the infant's primary "haven of safety"), placing the infant in a disorganizing approach-flight paradox. We suggest that, being linked to the parent's own unintegrated traumatic experiences (often loss or maltreatment), FR behaviors themselves are often guided by parental fright, and parallel the three "classic" mammalian responses to fright: flight, attack, and freezing behavior. Recent studies of U to FR, as well as FR to D relations are presented, including findings regarding AMBIANCE/FR+. Links between dissociation, FR, U, and D are explored. Parallel processing and working memory are discussed as they relate to these phenomena.

Funktionshinder och strategival. Om att hantera sig själv och sin omvärld

Peterson, G., Ekensteen, W & Rydén, O (2006)

Hur upplever och hanterar vuxna personer med stora rörelsehinder sin situation och sig själva? Hur hanterar funktionshindrade sina kontakter med vårdbyråkratin och med allmänheten? Hur påverkas självbild och livssyn av att leva med stora rörelsehinder? Det bärande temat i Funktionshinder och strategival är en kritik av den medikalisering som beskriver och formar funktionshindrade människors tillvaro; sjukförklaringen, omyndigförklaringen samt dikotomin i starka och svaga. Boken vänder sig emot ett utbrett grundantagande om funktionshindrade människors tragedi och speglar både ett inifrån- och ett utifrånperspektiv så att både de läsare som lever med funktionshinder och de som möter funktionshindrade kan känna igen sig.
Boken vänder sig till universitets- och högskolestuderande inom beteendevetenskap, vård, medicin och sociala områden samt yrkesverksamma som kommer i kontakt med människor med omfattande funktionshinder. Den kan med stor behållning också läsas av personer med funktionshinder och deras anhöriga.

ICF - en grund för tvärprofessionell journaldokumentation

SoS (2006)

När IT-stöden i vården utvecklas blir behovet av enhetliga begrepp och termer mera påtagligt. Detta betonas särskilt i såväl InfoVU-projektets slutrapport som i regeringens Nationella IT-strategi för vård och omsorg.

Flera landsting, sjukhus, kliniker och privata vårdgivare har under de senaste åren valt att använda Världshälsoorganisationen WHOs International Classification of Functioning, Disabilty and Health (ICF) som utgångspunkt för gemensamma termer och begrepp, vid införande av elektroniska journalsystem. ICF ingår i WHOs Family of International Classifications med det uttalade syftet att dels komplettera sjukdomsklassifikationen ICD, dels tillhandahålla ett tvärprofessionellt språk för att beskriva hälsa.

Syftet med förstudien är att få besked om ICF kan ligga till grund för fortsatt arbete med struktur och terminologi för ändamålsenlig vård- och omsorgsdokumentation och tydliggöra likheter och skillnader i dagens användning av ICF i e-journaler.

En enkät med förfrågan om man använder ICF skickades till Socialstyrelsens kontaktnätverk för terminologifrågor. Totalt inkom 36 svar varav 29 fördelade sig på 17 olika landsting, två svar kom från kommuner, fyra svar kom från privata företag och ett svar från en yrkesorganisation. I 13 av svaren angavs att man på något sätt använde, eller planerade att använda, ICF som underlag för struktur och innehåll i e-journalen. Ett kontaktnätverk för erfarenhetsutbyte etablerades och två arbetsseminarier genomfördes med syftet att besvara förstudiens frågeställningar.

I Danmark och Norge har man baserat på ICF utvecklat underlag för insamling av individbaserad vård- och omsorgsstatistik.

Inom ramen för InfoVU-projektet genomfördes tre olika försök baserade på ICF: webbaserad checklista för vårdplanering och överföring av information mellan olika vård- och omsorgsgivare, formulering av behov inom kommunal äldreomsorg samt individbaserad verksamhetsuppföljning.

De professionella organisationerna för arbetsterapeuter, sjukgymnaster och sjuksköterskor har, baserat på ICF, utarbetat förslag till en tvärprofessionell klassifikation för insatser och åtgärder, som ska ingå i Socialstyrelsens Klassifikation av vårdåtgärder (KVÅ).

I landstinget i Värmland och i Västmanlands läns landsting har man tagit beslut på att basera e-journalens struktur och innehåll på ICF. I vårdföretaget Kvalita AB är e-journalen sedan flera år tillbaka baserad på ICF. Inom andra landsting och regioner har man tagit delar av ICF som grund för dokumentationen. Rehabmedicin i Jönköping är ett exempel där ICF ligger till grund för den tvärprofessionella rehabiliteringsplanen.

Vid Karolinska Institutet och vid Örebro universitet används ICF i utbildningen av sjukgymnaster och arbetsterapeuter och som ramverk till forskningen inom respektive område.

Socialstyrelsen har beskrivit vård- och omsorgsassistenternas kvalifikationer med hjälp av ICFs struktur och innehåll.

Det råder konsensus, bland representanterna för de olika verksamhetsområden och professioner som deltagit i förstudien, om att ICF är en bra utgångspunkt för att uppnå en tvärprofessionell vård- och omsorgsdokumentation - en dokumentation som språkligt och innehållsmässigt kan vara en brygga mellan socialtjänst och hälso- och sjukvård.

Erfarenheter från drift, försök och andra tester visar att ICF behöver kompletteras. ICF saknar bl.a. begrepp för att beskriva vårdförlopp, t.ex. kontaktorsak och sjukhistoria. Ärftlighet och tidigare erfarenheter av vård och omsorg är annat som inte finns i ICF.

Språkliga anpassningar måste göras för att ICF ska bli användbar i vård och omsorgsdokumentationen, t.ex. genom att långa och otympliga begreppsbenämningar ges enklare, mera hanterbara s.k. "trivialnamn".

Det finns likheter och skillnader i användandet. Omfattningen av ICF begrepp som förts in i journaldokumentationen varierar. I några fall använder man i princip bara ICF-komponenterna på en övergripande nivå, medan andra byggt upp detaljerade sökordsstrukturer (ca 1000 begrepp). Några använder ICF mycket konsekvent medan andra blandar ganska friskt mellan traditionella sökord och ICF.

Förstudien pekar på följande områden som utgångspunkt för fortsatt arbete med ICF som grund för ändamålsenlig vård- och omsorgsdokumentation:

samordna arbetet inom ramen för den nationella informationsstrukturen och det nationella terminologiarbetet
tillvarata erfarenheterna av praktiska tillämpningar och försök
rikta information, utbildning och förankring till vård- och omsorgens huvudmän och deras personal
tillvarata de berörda yrkesorganisationernas kunskap och intresse att medverka till den tvärprofessionella dokumentationen.
Om Sverige beslutar om att gå med i SNOMED CTs internationella utvecklingsarbete och samtidigt väljer att basera den tvärprofessionella dokumentationen på ICF, är det viktigt att se till att ICFs struktur och terminologi införlivas i SNOMED CT

Oberoende av vilken begreppsstruktur som väljs för den tvärprofessionella e-journalen måste det finnas en etablerad organisation för förvaltning och underhåll. Socialstyrelsens termbank kan vara en del av denna resurs.

Identifying expressions of pleasure and displeasure by persons with profound and multiple disabilities

Petry, K., & Maes, B. (2006)

Abstract
BACKGROUND:
The aim of this study was to explore a procedure for drafting individualised profiles of how people with profound multiple disabilities express pleasure and displeasure.
METHOD:
There were 6 participants with profound multiple disabilities. The procedure involved an observational analysis of videotaped critical incidents by a researcher and a questionnaire for parents and support workers.
RESULTS:
The procedure is useful for making an individualised profile of the ways a person with profound multiple disabilities expresses his/her pleasure and displeasure. Despite the significant correlation between parents, support workers and the researcher, each has a complementary contribution to make in identifying affective expressions. People with profound multiple disabilities especially use sounds and facial expressions to express pleasure and displeasure and positive or negative moods.
CONCLUSIONS:
The procedure may be useful in services or schools for learning more about the affective communication of these individuals, to determine their specific interests, and to evaluate the effects of living and support characteristics on their wellbeing.

Interaction between the teacher and the congenitally deafblind child

Vervloed MPJ, Van Dijk RJM, Knoors H, Van Dijk JPM. (2006)

EMPIRICAL DATA on the development of interaction, communication, and language in deafblind children is very rare. To fill this gap, a case study was conducted in which the interaction between a teacher and a deafblind boy age 3 years 4 months was analyzed. Sequential analysis of their interaction confirmed some general clinical impressions about interaction with deafblind children, and provided the basis for suggestions on how the interaction pattern might be changed.

Jag vill säga något

Helena Alvesalo (2006)

Filmen vänder sig till den som vill inspireras till att använda TAKK, tecken som alternativ och kompletterande kommunikation. Vi får följa fyra barn i deras vardag. De är i olika åldrar och i olika behov av att kunna kommunicera. Gemensamt är att de och deras omgivning använder TAKK varje dag, i alla sammanhang.

Julie-Om att växa upp med en förälder som inte räcker till.

Gunilla O. Wahlström (2006)

En bok som har romanens form men som bygger på verkliga händelser och ger en inblick i hur barn kan ha det idag. Julie växer upp med en psykiskt sjuk mamma.Boken bygger på autentiska händelser som några personer valt att berätta om och beskriver på ett bra sätt hur det kan vara att växa upp med en förälder som är psykiskt sjuk.

Key worker services for disabled children: the views of staff

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

Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N = 50), managers (N = 7) and members of multi-agency steering groups (N = 32) from seven key worker services in England and Wales. A response rate of 62% was obtained. Major themes emerging from the interviews were identified, a coding framework was agreed upon, and data were coded using the qualitative data analysis programme Max QDA. Results showed that although the basic aims of the services were the same, they varied widely in the key workers' understanding of their role, the amount of training and support available to key workers, management and multi-agency involvement. These factors were important in staff's views of the services and inform recommendations for models of service.

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.

Komet för föräldrar. En randomiserad effektutvärdering av ett föräldraprogram för barns beteende problem.

Kling Å, Sundell K, Melin L, Forster M. (2006)

En av de viktigaste riskfaktorerna för våldsbrottslighet är tidiga beteendeproblem. Barn som är okoncentrerade och bråkiga riskerar i högre utsträckning att misslyckas inlärningsmässigt och få kamratproblem. Det ökar i sin tur risken för mer allvarliga former av antisociala aktiviteter som alkohol- och drogmissbruk, kriminalitet samt psykisk ohälsa. Det finns alltså påtagliga fördelar med att så tidigt som möjligt försöka hjälpa barn som ofta bråkar och bryter mot normer. Föräldraträning är den bästa metoden för att minska dessa problem hos barn. Ingen annan metod har bättre forskningsstöd. I denna rapport undersöks om det i Sverige utvecklade föräldraträningsprogrammet Komet kan hjälpa föräldrar att bättre hantera beteendeproblem hos det egna barnet. Utvärderingen omfattar Komet i ordinarie verksamhet och har genomförts i form av en randomiserad kontrollerad studie med 159 föräldrar till barn i åldrarna tre till tio år som av föräldrarna bedömdes vara bråkiga och trotsiga. Familjerna lottades till ett av tre alternativ: den ordinarie versionen av Komet, en kortversion av Komet samt en grupp som fick vänta en termin på behandling (väntelista). Data samlades in före interventionernas start samt efter fyra respektive tio månader. Den sista mätningen omfattade endast familjer som fått någon av Komet-versionerna. De familjer som ej deltagit i datainsamlingen vid fyra respektive tio månader (13%) har inte tillåtits snedvrida randomiseringen. I stället har deras sista mätvärde flyttats fram och använts för bortfallet. Detta sätt att hantera bortfall är det rekommenderade. Resultaten visar att Komet ökat föräldrarnas föräldrakompetenser vid fyramånadersmätningen samt minskat barnens beteendeproblem och ökat deras sociala kompetenser. Jämfört med gruppen som befunnit sig på väntelista hade den ordinarie versionen av Komet starka effekter på föräldrakompetenser (ES =.89) och beteendeproblem (ES =.68) och medelstarka på sociala kompetenser (ES =.41). För kortversionen av Komet var motsvarande effekter svaga till medelstarka (ES =.39,.35 resp.14). Effekterna av Komet förefaller stabila eller ökande efter i genomsnitt tio månader. Efter kompensation för väntelistans resultat efter fyra månader (motsvarande resultat efter tio månader saknas) har det ordinarie Komet mycket starka effekter för föräldrakompetenser (ES = 1.05) och barns beteendeproblem (ES =.92) samt starka för sociala kompetenser (ES =.69). För kortversionen av Komet var effekterna något lägre (.61,.55 resp.38). De positiva effekterna av den ordinarie versionen av Komet är enligt två meta-analyser i nivå med eller överträffar de genomsnittliga effekterna i andra föräldraträningsprogram. Barnens minskade beteendeproblem kunde kopplas till de förändrade föräldrabeteendena; ju bättre föräldrakompetens föräldrarna visade desto färre beteendeproblem hos barnen. Sökord. Föräldraträning, bråkiga barn,

Kompisboken om sorg

Lotta Polfeldt (2006)

För de allra flesta händer det inte. Men varje år mister fler än 3 000 barn och ungdomar en förälder eller ett syskon. Då är det viktigt att ha bra kompisar. Men hur ska en bra kompis vara när något så svårt händer? Finns det saker man helst inte ska göra eller säga? Törs man fråga om dödsfallet? Kan man vara precis som vanligt och skratta och skoja? I den här boken får du träffa några barn och ungdomar som förlorat en nära anhörig. Hur var deras kompisar då? Vad var bra och vad var kanske inte lika bra? Du får också träffa några kompisar.

Kvarboende eller flyttning på äldre dar. En kunskapsöversikt

Larsson K. (2006)

Rapporten sammanställer aktuell kunskap om de äldres boende, både ordinärt (det vill säga att bo "hemma") och särskilt boende. Syftet är också att beskriva faktorer som leder till flyttning respektive kvarboende på äldre dagar

Den så kallade kvarboendeprincipen, att samhället ska möjliggöra för den enskilde att kunna bo kvar i sitt eget hem, har varit den officiella policyn i decennier. Äldre personers faktiska möjlighet att bo kvar påverkas av en mängd faktorer som hälsa, familjeförhållanden, ekonomi samt bostädernas tillgänglighet för dem med funktionsnedsättning

Levnadsförhållanden

Statistiska Centralbyrån (2006)

Statistiken beskriver levnadsförhållanden för olika grupper i befolkningen 16 år och äldre i olika avseenden: boende, ekonomi, hälsa, fritid, medborgerliga aktiviteter, sociala relationer, sysselsättning och arbetsmiljö, trygghet och säkerhet.

Life events and peer substance use and their relation to substance use problems in college students

Taylor, J. (2006)

Substance use disorders among college students are not well understood, and the present study examined the relationship of two environmental factors to alcohol and drug use problems in 616 (316 women) college students. Participants completed measures assessing substance use problems, life events, and substance use among peers. Alcohol use problems were significantly associated with higher drug use problems and regular use of illicit drugs among friends. Drug use problems were significantly associated with male gender, higher alcohol use problems, regular use of alcohol and drugs among friends, illicit drug use among romantic partners, and higher numbers of negative life events. Results extend previous research and suggest that college students who experience multiple negative life events and/or affiliate with substance using friends and romantic partners may be at risk for developing a substance use problem.

Long-term effects of the intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients.

Gräsel E, Schmidt R, Biehler J, Schupp W. (2006)

OBJECTIVE:
To investigate an intensified transition concept between neurological inpatient rehabilitation and home care for long-term effects on the care situation two and a half years after stroke patients' discharge.
DESIGN:
Controlled clinical trial allocating patients to intervention group (intensified transition on ward II) or control group (standard transition on ward I); patients were allocated to whichever ward had a vacancy. The last follow-up assessment was carried out on average 31 months after discharge.
INTERVENTION:
The intensified transition concept consisted of therapeutic weekend care, bedside teaching and structured information for relatives during the second phase of the rehabilitation.
SUBJECTS:
Seventy-one patients and their family carers were included, of which one case dropped out. Therefore 70 family carers--35 individuals in each group-- were available for assessment at long-term follow-up.
DATA COLLECTION:
Family carers were asked via telephone whether the patient was still alive and if so, where he or she is living--at home or in a nursing home.
STATISTICAL METHODS:
Binary logistic regression analysis with the care situation (home care versus institutionalized care or deceased) as dependent variable.
RESULTS:
Two and a half years after discharge (T3) in the intervention group significantly fewer patients were institutionalized (2 versus 5) or deceased (4 versus 11) (P = 0.010). Multivariate analysis showed that besides a higher functional life quality at discharge and lower patient's age, the participation in the intensified transition programme is the third significant predictor for home care at T3.
CONCLUSION:
Effects of an intensified transition programme can persist over a long-term period. They can sustain home care by reducing institutionalization and mortality.

Masculine gender roles associated with increased sexual risk and intimate partner violence perpetration among young adult men

Santana, M. C., Raj, A., Decker, M. R., Marche, A. L., & Silverman, J. G. (2006)

This study sought to assess the association between traditional masculine gender role ideologies and sexual risk and intimate partner violence (IPV) perpetration behaviors in young men's heterosexual relationships. Sexually active men age 18–35 years attending an urban community health center in Boston were invited to join a study on men's sexual risk; participants (N=307) completed a brief self-administered survey on sexual risk (unprotected sex, forced unprotected sex, multiple sex partners) and IPV perpetration (physical, sexual and injury from/need for medical services due to IPV) behaviors, as well as demographics. Current analyses included men reporting sex with a main female partner in the past 3 months (n=283). Logistic regression analyses adjusted for demographics were used to assess significant associations between male gender role ideologies and the sexual risk and IPV perpetration behaviors. Participants were predominantly Hispanic (74.9%) and Black (21.9%); 55.5% were not born in the continental U.S.; 65% had been in the relationship for more than 1 year. Men reporting more traditional ideologies were significantly more likely to report unprotected vaginal sex in the past 3 months (ORadj = 2.3, 95% CI = 1.2–4.6) and IPV perpetration in the past year (ORadj = 2.1, 95% CI = 1.2–3.6). Findings indicate that masculine gender role ideologies are linked with young men's unprotected vaginal sex and IPV perpetration in relationships, suggesting that such ideologies may be a useful point of sexual risk reduction and IPV prevention intervention with this population.

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

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

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

Missbrukande föräldrar, utsatta barn och socialt arbete

Andersson, G., Bangura Arvidsson, M., Rasmusson, B., & Trulsson, K. (2006)

Starting university is associated with major academic, personal and social opportunities. For many people, university entrance is also associated with increased stress and alcohol consumption. At the start of the autumn term 2002, all students entering educational programmes at two comparable middle-sized Swedish universities were invited to participate in a comparative intervention study. This included both primary and secondary interventions targeting hazardous drinking and stress. The overall aim was to improve alcohol habits and stress patterns in university freshmen at an intervention university in comparison with a control university.

A total of 2,032 (72%) freshmen responded to the baseline assessment. Half of them scored above traditional AUDIT cut-off levels for hazardous alcohol use. Factors associated with hazardous use were age below 26, male gender, family history of alcohol problems, and not being in a serious relationship. The Arnetz and Hasson Stress Questionnaire was evaluated and used to study a selection of freshmen at high riskof stress. It was easy to use and offered sufficient internal consistency and construct validity. In the freshman year, 517 students (25%) dropped out from university education. A multivariate analysis established that high stress and university setting was associated with dropout from university studies, while symptoms of depression and anxiety as well as hazardous drinking were not.

Outcome was analysed in students remaining at university at one-year follow-up. The primary interventions offered to freshmen at the intervention university reduced alcohol expectancies and mental symptoms compared with freshmen at the control university. Secondary stress interventions were effective in reducing mental symptoms and alcohol expectancies. Secondary alcohol interventions were effective in reducing AUDIT scores, alcohol expectancies, estimated blood alcohol concentrations, as well as stress and mental symptoms.

In conclusion, both primary and secondary alcohol and stress interventions have one-year effects in university freshmen and could be used in university settings.

Morbidity and mortality among foreign-born Swedes

Albin, B. (2006)

Det svenska samhället har under senare delen av 1900-talet påverkats och förändrats på grund av en ökad internationell migration. År 1950 var 2,8 % av den svenska befolkningen utrikesfödd; idag utgör de utrikesfödda 12,0 % av totalbefolkningen. Om även andragenerationens migranter (de som har en eller båda föräldrar utrikesfödda) räknas med utgör första och andragenerationens migranter tillsammans 20 % av Sveriges befolkning. Tidigare studier har visat att migration kan påverka hälsa och hälsoutveckling på både positiva och negativa sätt. Ett accepterat sätt att mäta hälsa och hälsoutveckling är att studera morbiditet och mortalitet i en befolkning. Ett fåtal studier har återfunnits som har undersökt morbiditet och mortalitet bland migranter. Ingen av dessa har haft en longitudinell design och undersökt en total population av migranter i ett land. Det övergripande syftet var att beskriva och jämföra hälsa och hälsoutveckling över tid mellan svenskfödda och utrikesfödda och genom detta att studera migrationens påverkan på hälsa. De fyra i avhandlingen ingående delarbetena bygger på analys av data från Statistiska Centralbyrån och Socialstyrelsens Centrum för Epidemiologi. I databasen har ingått samtliga utrikesfödda, 16 eller äldre som fanns i Sverige 1970. Till varje utrikesfödd person finns en svensk kontroll matchad vad gäller kön, ålder, sysselsättning, yrke och bosättningslän. För 20 518 utrikesfödda personer kunde inte en kontroll skapas på grund av matchningskriterierna; dessutom exkluderades de personer som under den studerade tiden (1970?1999) hade emigrerat från Sverige. Totalt kom databasen som användes för analys att omfatta 723 948 personer, 50 % utrikesfödda och 50 % svenska kontroller. Den första delstudiens syfte var att beskriva och jämföra mortalitet mellan utrikesfödda och svenskfödda under perioden 1970?1999. Resultaten visade en generellt högre dödlighet bland utrikesfödda (OR 1,08) och en lägre medelålder vid tidpunkten för dödsfallet. Speciellt hög mortalitetsrisk återfanns bland män från Finland (OR 1,21), Danmark (OR 1,11) och Norge/Island (OR 1,07). Två ålderskohorter jämfördes, personer födda 1901?1920 respektive personer födda 1921?1944, och analysen visade en högre mortalitet för personer i den äldsta ålderskohorten. Personer som hade invandrat ?sent? till Sverige visade större skillnader i medelålder vid död än de som hade invandrat ?tidigt?; personer som kommit till Sverige under perioden 1941?1970 hade en 2,5 år lägre medelålder vid tiden för dödsfallet. Syftet för den andra delstudien var beskriva, jämföra och analysera dödsorsaksmönster bland utrikesfödda och svenskfödda under perioden 1970?1999. Studiens resultat visade ett större antal avlidna i sex olika ICD-huvuddiagnosgrupper och en lägre medelålder vid tiden för dödsfallet bland utrikesfödda. Födelselandet hade betydelse för dödsorsaksmönstret. Vid jämförelse med de svenska kontrollerna återfanns bland migranter från Danmark ett större antal avlidna i diagnosgruppen ?Neoplasm?, bland migranter från Finland och Polen var skillnaden stor i gruppen ?Diseases of the circulatory system? och personer från tidigare Jugoslavien särskilde sig mot kontrollerna framför allt med ett större antal avlidna i gruppen ?Symptoms, signs and ill-defined conditions?. Över tid fanns en tendens till en utjämning av skillnaderna i diagnosmönstret mellan utrikesfödda och svenskfödda. Då de två tidigare studierna hade visat på skillnader i mortalitet och morbiditet mellan utrikesfödda och svenskfödda kom den tredje studien att som syfte ha att beskriva, jämföra och analysera konsumtion av hälso- och sjukvård i fyra olika ICD-diagnosgrupper. Som mått på sjukvårdskonsumtion användes antal inläggningar på sjukhus, totalt antal vårddagar och vårddagar under de två sista inläggningstillfällena på sjukhus bland avlidna utrikesfödda och svenskfödda 1987?1999. Resultatet visade en tendens till mindre sjukvårdskonsumtion bland utrikesfödda, särskild vad gäller utrikesfödda män. Mindre sjukvårdskonsumtion för utrikesfödda återfanns i två av de fyra använda diagnosgrupperna (?Symptoms, signs and ill-defined conditions? och ?Injury and poisoning ?). Att vara utrikesfödd, justerat för ålder, var en oberoende bestämmande faktor för inläggning på sjukhus. Den nollhypotes som formulerats vid studiens start, att skillnader mellan utrikesfödda och svenskfödda beträffande sjukvårdkonsumtion inte fanns, kunde tillbakavisas. Det sista delarbetets syfte var att beskriva och jämföra skillnader i mortalitet i olika landsting mellan utrikesfödda och svenskfödda med en formulerad nollhypotes att inga mortalitetsskillnader fanns mellan olika landsting. Studiens resultat kunde tillbakavisa nollhypotesen, det fanns skillnader i mortalitet mellan utrikesfödda och svenskfödda framför allt i de län som kunde karaktäriseras som mera ?landsbygds?-dominerade. Landsbygdsdominerade län hade också gemensamt att deras populationer av migranter var förhållandevis små. Medelåldern vid tiden för avlidande var för män mellan 1,0?4,3 år lägre för utrikesfödda personer. Resultaten av de i avhandlingen ingående fyra olika studierna visar högre dödlighet, annorlunda sjukdomsmönster och tendens till lägre konsumtion av vård bland utrikesfödda än bland svenskfödda personer under perioden 1970?1999. Flera faktorer, såsom ekonomisk situation, arbete, arbetsmiljö, arbetslöshet, sociala nätverk och situationen före migrationen kan ha påverkat de utrikesföddas sämre hälsoläge. Den fysiska och sociala miljön och eventuella ojämlikheter i sjukvårdsresurser och tillgång till vård spelar också en viktig roll. Migrationen har haft en negativ inverkan på de utrikesföddas hälsa och är en viktig faktor att ta hänsyn till vid studier av hälsa och hälsoutveckling bland befolkningen i ett land

Mänskliga rättigheter - Konventionen om barnets rättigheter

Regeringskansliet (2006)

Den 20 november 1989 antog Förenta nationernas generalförsamling konventionen om barnets rättigheter. Det innebar ett viktigt tillskott till skyddet för de mänskliga rättigheterna. För första gången samlades de rättigheter som tillkommer alla barn och ungdomar upp till 18 år i ett folkrättsligt bindande dokument. Denna skrift innehåller bl.a. konventionens budskap, förteckning över konventionens artiklar och konventionstexten.

OBS! När FN antog och Sverige ratificerade konventionen om barnets rättigheter låg ansvaret inom UD. Därför tog UD fram en skrift om konventionen, samt en lättläst version. Ansvaret finns nu sedan flera år i Socialdepartementet, med Barnombudsmannen som ansvarig myndighet för att sprida information om Barnkonventionen. Därför hänvisar UD till Barnombudsmannen för information och beställning av trycksaker om Barnkonventionen. UD:s skrifter som tidigare distribuerades i tryckt form, finns fortfarande att ladda ner i pdf-format.

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 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.

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.

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.

Barnperspektiv som ideologiskt eller metodologiskt begrepp

Halldén, Gunilla (2003)

Begreppet barnperspektiv är mångtydigt. Det används som ett ideologiskt begrepp med stor retorisk kapacitet och det används i vetenskapliga sammanhang som ett metodologiskt begrepp. Artikeln diskuterar olika innebörder som kan ges åt begreppet barnperspektiv och sätter det i relation till aktuell barndomsforskning. En diskussion förs också om hur barnperspektiv kan diskuteras i relation till ett empiriskt material med barns texter som ställer frågor om hur man ska transkribera och citera ur texten. Det väcker också frågor om vilken kontext som ska utgöra bakgrund för analysen. Sättet att hantera dessa frågor är beroende av etiska ställningstaganden och av de frågeställningar och det teoretiska perspektiv som styr analysen. Artikeln argumenterar för vad som utgör ett barnperspektiv i just denna studie nämligen att utgå från barns utsagor, men i tolkningen ställa dessa utsagor i relation till diskurser om barndom. Barnperspektiv blir då både att fånga barns röster och att tolka dem som uttryck för ett diskursivt sammanhang. Barnperspektiv handlar om vilken plats barn ges i vårt samhälle, vilka generella erfarenheter som det ger barn och på vilket sätt barnen uttrycker dessa erfarenheter. Barnperspektiv blir då något utöver att återge barns perspektiv på olika fenomen.

Behaviour style and interaction between seven children with multiple disabilities and their caregivers

Wilder, J. and M. Granlund (2003)

Introduction. Recent studies show that the existing interaction patterns of children with multiple disabilities should be taken into consideration when planning communication interventions. For children with disabilities, it is especially important that the partner in interaction is sensitive and well aware of the importance of a qualitatively successful interaction. Wilder (unpublished report) found that the behaviour style of 30 children with multiple disabilities was more related to the caregiver-perceived interaction than the communicative skills and functional abilities of the children. This study inductively explored the caregivers' perceptions of interaction within seven caregiver-child dyads. The research questions were: How do the caregivers perceive the interaction? How do the caregivers perceive the children's behaviour style to be related to the interaction with the caregivers? Method. The children were selected individually from the participants in Wilder (unpublished report) depending upon the responses the caregivers had given about the children's self-regulation and reactivity in the Carolina Record of Individual Behaviour questionnaire. The study was undertaken by means of home visits where the caregivers participated in an interview asking about their strategies for interaction, how they perceived the roles of the children and their own roles in interaction, the caregivers' opinion of what an interaction constituted of and the caregivers' aims and aspiration for interaction. The data analysis was performed by meaning concentration and categorization through a pendulum between the parts and the entirety of the interviews. In this way, hermeneutics and thematic analysis were both being practised. Results. The results of the interviews are presented as a model with categorizations as a network. The categorizations reflect the system of themes that permeate how the caregivers perceived interaction in the dyad. The themes are: sharing of experience, successful interaction, role of the child, role of the caregiver, interaction methods, obstacles and facilitators and aims and aspirations. Discussion. The caregivers perceived their own role in interaction to be of a sensitive leading kind. The caregivers lead the interaction by using their knowledge about the children's usual way of interacting, the children's behaviour styles, functional abilities, the children's current mood and situation as well as the whole context. They monitored the interaction such that, throughout an interaction sequence, the caregivers always tried to optimize the interaction between the parties in the dyad. The behaviour style was a background factor that the caregivers had knowledge of and scanned in their everyday turn taking. Although there were differences in the children's behaviour styles, the caregivers discussed the same themes in the interviews. The behaviour style became a facilitator for the whole interaction, forced the interaction in certain directions and made the interaction more complete with turn taking of different kinds from both parties. The findings show that it is imperative to see caregivers as experts on their children and to make them assertive in this in relation to professionals. Furthermore, as a successful interaction can boost the development of children, it is essential to direct interventions to the everyday interaction in caregiver-child dyads.

Brief report: Behavioral adjustment of siblings of children with autism.

Hastings RP. (2003)

Existing research studies have shown mixed results relating to the impact upon children of having a sibling with a disability. However, siblings of children with autism may be more at risk than siblings of children with other disabilities. In the present study, data were gathered on 22 siblings of children with autism. These children were rated by their mothers as having more behavior problems and fewer prosocial behaviors than a normative sample. Analysis of variables predicting sibling behavioral adjustment revealed that boys with siblings who have autism, and also those younger than their sibling with autism, engaged in fewer prosocial behaviors. Psychological adjustment of mothers (stress) and the child with autism (behavior problems) were not predictive of sibling behavioral adjustment.

Burden in Schizophrenia Caregivers: Impact on Family Psychoeducation and Awerness of Patient Suicidality

McDonnell, G. Michael, Short, A. Robert, Berry, M. Christopher & Dyck, G. Dennis (2003)

Family caregivers of persons with schizophrenia and other psychotic disorders experience high levels of burden. Although a number of patient and caregiver predictors of burden have been identified, little research has investigated the contributions of patient depression, suicidal ideation, and substance abuse. In addition, family psychoeducation interventions have reduced patient symptoms, as well as inpatient treatment utilization; however, it is not known whether or not these interventions reduce family burden. This study- investigated predictors of family burden and tested to what degree multiple family group treatment (MFGT), relative to a standard-care condition, was associated with reduced family burden. Participants were 90 outpatients with a diagnosis of schizophrenia or other psychotic disorders, and their caregivers who were enrolled in a 2 year psychoeducation intervention. The best set of predictors of burden, identified by stepwise linear regression, was young patient age, awareness of patient's suicidal ideation, and family resources. These variables accounted for 32% of the total variance in burden. Findings suggest that caregiver's awareness of patient's suicidal ideation; not patient's report of suicidal ideation; and that patient age not duration of the illness, were significant, independent predictors of burden. When compared to a standard-care condition over 2 years, MFGT did not reduce family caregiver burden. Discussions focus on the relationship between burden and its predictors, and possible reasons why MFGT did not decrease burden. Modifications are proposed that may increase the impact of MFGT.

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.

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 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.

Common Questions about AAC Services in Early Intervention

Cress, C. J., & Marvin, C. A. (2003)

Children and adults with developmental delays have benefited from the use of augmentative and alternative
communication (AAC) systems to develop language skills necessary for more generative and functional communication.
Beginning communicators however, have historically been considered too young or too pre-linguistic
and therefore have not been introduced to AAC systems until behaviors, thought to be prerequisites,
have been noted. Recent research and theories about early communication development have challenged this
traditional practice and broadened the scope of what is considered to be AAC. Practitioners and parents unfamiliar
with early AAC options may not recognize possible applications of communication strategies used with
typically developing children and older persons with developmental disabilities. AAC is applicable at all ages
for learning communication roles and behaviors as well as for functional communication for persons who do
not yet demonstrate clear referential symbol use. This article addresses nine questions that are frequently asked
about early introduction of AAC systems to children under 3 years of age. Rationales and strategies are provided
that can assist early interventionists and parents in considering AAC options for children at risk for being
unintelligible or non-speaking.

Communicative spontaneity of children with high support needs who use augmentative and alternative communication systems I: Classroom spontaneity, mode, and function

Carter, M. (2003)

In the present study, the communicative spontaneity of 23 children with high support needs who used Augmentative and Alternative Communication (AAC) in a classroom setting was evaluated. In contrast to previous research, spontaneity was evaluated on a continuum rather than being treated as a binary variable. Spontaneity was found to be highly variable, but some students clearly lacked the range of spontaneity that would be associated with fully functional communication. Aided AAC systems were notably less spontaneous than signing or nonsymbolic communication. There was also evidence of systematic variation in spontaneity across pragmatic function, with instrumental functions being more spontaneous than commenting. The results of the present study highlight the need to consider spontaneity when assessing individuals who use AAC systems.

Controlled trial of the short- and long-term effect of psychological treatment of post-partum depression – 1. Impact on maternal mood!

COOPER, P. J., MURRAY, L., WILSON, A. & ROMANIUK, H. (2003)

Background Psychological interventions for postnatal depression can be beneficial in the short term but their longer-term impact is unknown.

Aims To evaluate the long-term effect on maternal mood of three psychological treatments in relation to routine primary care.

Method Women with post-partum depression (n=193) were assigned randomly to one of four conditions: routine primary care, non-directive counselling, cognitive—behavioural therapy or psychodynamic therapy. They were assessed immediately after the treatment phase (at 4.5 months) and at 9, 18 and 60 months post-partum.

Results Compared with the control, all three treatments had a significant impact at 4.5 months on maternal mood (Edinburgh Postnatal Depression Scale, EPDS). Only psychodynamic therapy produced a rate of reduction in depression (Structured Clinical Interview for DSM—III — R) significantly superior to that of the control. The benefit of treatment was no longer apparent by 9 months post-partum. Treatment did not reduce subsequent episodes of post-partum depression.

Conclusions Psychological intervention for post-partum depression improves maternal mood (EPDS) in the short term. However, this benefit is not superior to spontaneous remission in the long term.

Correlational and experimental study of resilience in children and parentally bereaved children

Sandler, I., Wolchik, S., Davis, C., Haine, R. & Ayers, T. (2003)

This chapter presents research on resilience of children and adolescents who have experienced two major disruptions of the nuclear family, parental divorce and parental bereavement. The two research programs share a common research paradigm in which there is an iterative relationship between correlational and experimental studies (Sandler, Wolchik, MacKinnon, Ayers, & Roosa, 1997). Correlational studies are used to identify protective and vulnerability factors, particularly those that may be modifiable by planned interventions. Experimental studies are designed on the basis of the small theory that changing these factors in the desirable direction will promote resilience. Randomized experimental trials of the interventions are conducted to test whether the intervention has changed these vulnerability and protective factors and reduced negative outcomes and whether change in negative outcomes is mediated by change in the vulnerability and protective factors (Sandler et al., 1997). The mediational analysis within the randomized trial provides a stronger test of the causal role of the vulnerability and protective factors to influence negative outcomes than is provided by the correlational studies, and thus contributes to theory about resilience (Rutter, Pickles, Murray, & Eaves, 2001).

The chapter first presents a theoretical framework that specifies alternative models of the influence of vulnerability and protective factors on the resilience of children experiencing significant adversities. We then discuss correlational research on key constructs in the theoretical framework: adversity, and child and family protective and vulnerability factors.

Costs and Caregiver Consequences of Early Supported Discharge for Stroke Patients

Teng J, Mayo NE, Latimer E, Hanley J, Wood-Dauphinee S, Côté R, et al. (2003)

Background and Purpose— Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care.

Methods— We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home.

Results— Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group.

Conclusions— Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care.

Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics

Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B. (2003)

BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.

Den svenska psykiatrireformen. Bland brukare, eldsjälar och byråkrater

Markström, U. (2003)

Människor med ett psykiskt funktionshinder ska ha samma möjlighet till gemenskap och delaktighet som andra. Den målsättningen var grunden för den svenska psykiatrireformen som trädde i kraft 1995.

De psykiskt funktionshindrades livssituation skulle förbättras med hjälp av effektivare insatser och tydligare ansvarsfördelning mellan kommuner och landsting.

Det blev en omdebatterad reform. Kritikerna menar att de psykiskt funktionshindrade riskerar att överges eller hänvisas till en socialtjänst utan nödvändig kunskap.

Förespråkarna hävdar tvärt om att utvecklingen är nödvändig för att kunna integrera de psykiskt funktionshindrade i samhället.

I denna bok studeras planeringen och genomförandet av psykiatrireformen samt den historiska utvecklingen på psykiatriområdet, från de stora mentalsjukhusen till dagens situation. Utvecklingen av nya synsätt och arbetsmetoder granskas, liksom den politiska processen bakom psykiatrireformens tillkomst.
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Den tatuerade mamman

Jaquelin Wilson (2003)

Dolphin och Star älskar sin mamma Marigold. Hon är rolig, äventyrlig och påhittig - och täckt från topp till tå med tatueringar. Flickorna tycker att de har världens bästa mamma. Om hon bara inte vore så oberäknelig, opålitlig och sällan fanns där för dem. Marigold festar mycket och lever sitt liv som hon gjorde under hippie-tiden. Men ibland går hon in i djupa depressioner. Hon är inte någon exemplarisk mamma och kanske inte heller rätt person att ha ansvar för två unga flickor?

Det är bara att kämpa på. Barns upplevelse av habilitering, skola och fritid, samt kommentarer från föräldrar: Teknik, Kommunikation Handikapp, rapport 34

Bernehäll Claesson, I. (2003)

Syftet med denna rapport är att belysa hur barn med cerebral pares mellan
tio och sjutton år upplever sina möjligheter att påverka stödinsatser och
behandlingsmetoder som de erhåller från olika institutioner samt att öka
kunskaperna om deras unika situation. Det innebär att intresset fokuserar på
barnens upplevelser och erfarenheter av habilitering, skola och fritid. Dessa
barns vardag skiljer sig i många avseenden från andra barns vardag.
Metoden som använts är intervjuer med barnen men jag har även talat med
föräldrarna. Med hjälp av barnhabiliteringen vid Kärnsjukhuset i Skövde,
Handikappförvaltningen i Järfälla kommun samt Mullback Institutet i
Karlsborg, har jag fått kontakt med familjerna. De har tillfrågat familjerna
om intresse att delta. De flesta intervjuer har genomförts i barnens hem, en
på ett fritidshem samt två på Mullback Institutet.
Resultatet visade att barnen är relativt nöjda och tycker det mesta fungerar
bra. Det som ibland är problem är kamratkontakterna i skolan och på
fritiden. Många barn känner sig ensamma och isolerade. Föräldrarna anser
att deras barn är i behov av mer träning via habiliteringen och betonar att
kamratkontakterna är ett större problem än vad barnen ibland vill erkänna.

Does early caregiving matter? The effects on young caregivers’ adult mental health

Shifren, K., & Kachorek, L.V. (2003)

Limited information is available on the long-term effects of providing care for adults when caregiving begins in childhood in the United States. The current study provided an examination of the effects of youthful caregiving on the mental health of these persons when adults, and provided a description of their early family relations. Twenty-four individuals, 21 to 58 years old, were given brief phone interviews with semistructured questions about their early caregiving experiences, and then they completed questionnaires on their early caregiving experiences, mental health, and early parent–child relations. To be included, respondents must have provided primary caregiving assistance (i.e., bathing, feeding, etc.) for a parent or adult relative when the caregiver was under 21 years old. Results showed that the sample reported more positive mental health than negative mental health, though 42% had high depressive scores on the total CES-D. Individuals who reported fathers as too protective reported less current positive mental health. Early caregiving is not associated with poor mental health in adulthood for many young caregivers. However, some individuals do appear at risk of depression in adulthood.

Effectiveness of Child Case Management Services for Offspring of Drug-Dependent Women

Jansson LM, Svikis DS, Beilenson P. (2003)

Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.

Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics

Gallant MD, Lafreniere KD. (2003)

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics.

Gallant MD, Lafreniere KD. (2003)

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Evaluation of a stroke family support organiser: a randomized controlled trial.

Lincoln NB, Francis VM, Lilley SA, Sharma JC, Summerfield M. (2003)

Background and Purpose— There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service.

Methods— Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services.

Results— There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information.

Conclusions— The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers.

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature

Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S. (2003)

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature

Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S. (2003)

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Experiences of parents with a son or daughter suffering from Schizophrenia

Ferriter M, Huband N. (2003)

Parents of 22 patients diagnosed with schizophrenia, and receiving care in a secure forensic setting, were interviewed to elicit their views on the causes of the disorder, the emotional burden and the helpfulness of others when seeking support. Pathological parenting theories of causation were rated the least important, and biological and life-event models the most. Stress, loss and fear were the most commonly reported reactions. Violence, withdrawal and verbal aggression were most often identified as behaviours causing difficulty. Many participants felt guilt, usually in the absence of being blamed. Family members and self-help groups were recalled as being of most help, and professional staff were considered to be of least help. Parenting a son or daughter with schizophrenia frequently causes considerable emotional distress, often with perception of unhelpful responses from professional staff. Parents often blame themselves for the disorder, even when not blamed by others. Guilt does not appear to arise from belief in a pathological parenting model of schizophrenia. Factors contributing to self-blame in this group are discussed, together with suggestions for appropriate therapeutic intervention.

Family-Based Interventions for Substance Use and Misuse Prevention

Kumpfer KL, Alvarado R, Whiteside HO. (2003)

Because "substance abuse" is a "family disease" of lifestyle, including both genetic and family environmental causes, effective family strengthening prevention programs should be included in all comprehensive substance abuse prevention activities. This article presents reviews of causal models of substance use and evidence-based practices. National searches by the authors suggest that there is sufficient research evidence to support broad dissemination of five highly effective family strengthening approaches (e.g., behavioral parent training, family skills training, in-home family support, brief family therapy, and family education). Additionally, family approaches have average effect sizes two to nine time larger than child-only prevention approaches. Comprehensive prevention programs combining both approaches produced much larger effect sizes. The Strengthening Families Program (SFP) is the only one of these programs that has been replicated with positive results by independent researchers with different cultural groups and with different ages of children. Few research-based programs have been adopted by practitioners, partly because of technology transfer issues. Overall, research on ways to improve dissemination, marketing, training, and funding is needed to improve adoption of effective prevention programs.

För den jag är – om utbildning och utvecklingsstörning

SOU (2003)

Carlbeck-kommittén har till uppgift att se över utbildningen för barn, ungdomar och vuxna med utvecklingsstörning. Delbetänkandet För den jag är om utbildning och utvecklingstörning (SOU: 2003: 35), är en beskrivning och kartläggning av hur utbildningen för barn, ungdomar och vuxna ser ut i dag.

Kommitténs uppgift är att hitta vägar att stärka utbildningen för barn, ungdomar och vuxna med utvecklingstörning med det övergripande målet att åstadkomma en inkluderande skola och en inkluderande undervisning.

Föräldrastöd i Sverige 2002

Statens folkhälsoinstitut (2003)

Internet kan ge bra stöd i föräldrarollen visar ny studie från Statens folkhälsoinstitut. Delrapport från uppdraget om föräldrastöd. Under utredningstiden har flera delrapporter tagits fram. Delrapporterna är "Föräldrastöd i Sverige år 2002", "Verklig gemenskap i en virtuell värld?", "Stöd till föräldrar för att främja barns och ungdomars psykiska hälsa" och slutrapporten "Nya verktyg för föräldrar".

Manual for the ASEBA Adult Forms and Profiles

Achenbach TM, Rescorla LA (2003)

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

Mortality in parents after the death of a child in Denmark: a nationwide follow-up study

Li, J., Precht D. H., Mortensen P. B., & Olsen J. (2003)

Abstract
BACKGROUND:
Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents.
METHODS:
We undertook a follow-up study based on national registers. From 1980 to 1996, we enrolled 21062 parents in Denmark who had a child who had died (exposed cohort), and 293745 controls--ie, parents whose children were alive, and whose family structure matched that of the exposed cohort. Natural deaths were defined with ICD8 codes 0000-7969 and ICD10 codes A00-R99, and unnatural deaths with codes 8000-9999 and V01-Y98. We used Cox's proportional-hazards regression models to assess the mortality rate of parents up to 18 years after bereavement.
FINDINGS:
We observed an increased overall mortality rate in mothers whose child had died (hazards ratio 1.43, 95% CI 1.24-1.64; p<0.0001). An excess mortality from natural causes (1.44, 1.15-1.78; p<0.0001) was noted in mothers only during the 10th-18th year of follow-up. Mothers had increased mortality rates from unnatural causes throughout follow-up, with the highest rate recorded during the first 3 years (3.84, 2.48-5.88; p<0.0001). Bereaved fathers had only an early excess mortality from unnatural causes (1.57, 1.06-2.32; p=0.04). Mothers who lost a child due to an unnatural death or an unexpected death had a hazard ratio of 1.72 (1.38-2.15; p=0.0040) and 1.67 (1.37-2.03; p=0.0037), respectively.
INTERPRETATION:
The death of a child is associated with an overall increased mortality from both natural and unnatural causes in mothers, and an early increased mortality from unnatural causes in fathers.

Mortality, severe morbidity an injury in children living with single parents in Sweden: a population-based study

Ringbäck-Weitoft, G, Hjern, A, Haglund, B & Rosén, M (2003)

Abstract
BACKGROUND:
Growing up with one parent has become increasingly common, and seems to entail disadvantages in terms of socioeconomic circumstances and health. We aimed to investigate differences in mortality, severe morbidity, and injury between children living in households with one adult and those living in households with two adults.
METHODS:
In this population-based study, we assessed overall and cause-specific mortality between 1991 and 1998 and risk of admission between 1991 and 1999 for 65085 children with single parents and 921257 children with two parents. We estimated relative risks by Poisson regression, adjusted for factors that might be presumed to select people into single parenthood, and for other factors, mainly resulting from single parenthood, that might have affected the relation between type of parenting and risk.
FINDINGS:
Children with single parents showed increased risks of psychiatric disease, suicide or suicide attempt, injury, and addiction. After adjustment for confounding factors, such as socioeconomic status and parents' addiction or mental disease, children in single-parent households had increased risks compared with those in two-parent households for psychiatric disease in childhood (relative risk for girls 2.1 [95% CI 1.9-2.3] and boys 2.5 [2.3-2.8]), suicide attempt (girls 2.0 [1.9-2.2], boys 2.3 [2.1-2.6]), alcohol-related disease (girls 2.4 [2.2-2.7], boys 2.2 [2.0-2.4]), and narcotics-related disease (girls 3.2 [2.7-3.7], boys 4.0 [3.5-4.5]). Boys in single-parent families were more likely to develop psychiatric disease and narcotics-related disease than were girls, and they also had a raised risk of all-cause mortality.
CONCLUSIONS:
Growing up in a single-parent family has disadvantages to the health of the child. Lack of household resources plays a major part in increased risks. However, even when a wide range of demographic and socioeconomic circumstances are included in multivariate models, children of single parents still have increased risks of mortality, severe morbidity, and injury.

Mortality, severe morbidity, and injury in children living with single parents in Sweden: a population- based study

Ringbäck-Weitoft, G. Hjern A Haglund, B. Rosén, M (2003)

Background
Growing up with one parent has become increasingly common, and seems to entail disadvantages in terms of socioeconomic circumstances and health. We aimed to investigate differences in mortality, severe morbidity, and injury between children living in households with one adult and those living in households with two adults.

Methods
In this population-based study, we assessed overall and cause-specific mortality between 1991 and 1998 and risk of admission between 1991 and 1999 for 65 085 children with single parents and 921 257 children with two parents. We estimated relative risks by Poisson regression, adjusted for factors that might be presumed to select people into single parenthood, and for other factors, mainly resulting from single parenthood, that might have affected the relation between type of parenting and risk.

Findings
Children with single parents showed increased risks of psychiatric disease, suicide or suicide attempt, injury, and addiction. After adjustment for confounding factors, such as socioeconomic status and parents' addiction or mental disease, children in single-parent households had increased risks compared with those in two-parent households for psychiatric disease in childhood (relative risk for girls 2·1 [95% CI 1·9–2·3] and boys 2·5 [2·3–2·8]), suicide attempt (girls 2·0 [1·9–2·2], boys 2·3 [2·1–2·6]), alcohol-related disease (girls 2·4 [2·2–2·7], boys 2·2 [2·0–2·4]), and narcotics-related disease (girls 3·2 [2·7–3·7], boys 4·0 [3·5–4·5]). Boys in single-parent families were more likely to develop psychiatric disease and narcotics-related disease than were girls, and they also had a raised risk of all-cause mortality.

Conclusions
Growing up in a single-parent family has disadvantages to the health of the child. Lack of household resources plays a major part in increased risks. However, even when a wide range of demographic and socioeconomic circumstances are included in multivariate models, children of single parents still have increased risks of mortality, severe morbidity, and injury.

My-Elins mamma har MS

Barbro Ernemo, Nilsson-Bergman (2003)

Det här är en bok om och hennes familj. My-Elins mamma är också som mammor är mest: snäll, glad och litet tjatig. Men ibland blir mamma jättetrött. Hon har en sjukdom som kallas MS. Den gör att armar och ben inte gör som hon vill. Ibland ser hon konstiga saker och ibland glömmer hon. Sjukdomen gör att allt inte går som planerat i My-Elins familj.

Normaliseringsprincipen

Nirje, Bengt (2003)

ormaliseringsprincipen handlar om funktionshindrades rätt till livsvillkor och vardagsmönster som ligger så nära de normala som möjligt. Sedan principen formulerades av Bengt Nirje i slutet av 1960-talet har den haft ett stort inflytande på handikappolitiken både i Sverige och i andra länder. Nirje har under årens lopp i artiklar på engelska presenterat och utvecklat principen. I denna bok presenteras dessa artiklar i uppdaterat skick för första gången på svenska och samlade i ett verk.

Principen utgår från att alla individers jämlikhet med den därav följande etiken som grund under livets gång. Särskilt nyskapande blev Nirjes betoning av utvecklingsstördas rätt till självbestämmande.

Principen är tvärvetenskaplig och kan därför studeras av högskolestuderande inom pedagogik, psykologi, socialpsykologi, kulturantropologi, sociologi samt omsorgsvetenskap. Den kan även vara av intresse för yrkesverksamma samt föräldrar till funktionshindrade.

Normaliseringsprincipen sätts i ett inledande kapitel in i sitt historiska sammanhang av Mårten Söder, som i ett avslutande kapitel även diskuterar dess betydelse för handikappolitik och handikappforskning.

Effects of a web-based stroke education program on recurrence prevention behaviors among stroke patients: a pilot study.

Kim JI, Lee S, Kim JH. (2013)

The effectiveness of methods to prevent stroke recurrence and of education focusing on learners' needs has not been fully explored. The aims of this study were to assess the effects of such interventions among stroke patients and their primary caregivers and to evaluate the feasibility of a web-based stroke education program. The participants were 36 patients with a clinical diagnosis of ischemic stroke within 12 months post-stroke and their primary caregivers. The participants were randomly assigned to either an experimental or a control group. The primary measures included blood chemistry, self-reported health behaviors, sense of control, and health motivation for stroke patients, and caregiver mastery for caregivers. To test the feasibility of the intervention program, the rates of participation and occurrence of technical problems were calculated. The experimental group tended to improve significantly more than the control group in terms of exercise, diet, sense of control and health motivation for the stroke patients and in terms of caregiver mastery for the primary caregivers. The rate of participation in the web-based program was 63.1%. This program, which focuses on recurrence prevention in stroke patients and caregivers, has the potential to improve health behaviors for stroke patients.

En erfarenhet rikare?: En kvalitativ studie av barns strategier och barnfattigdomens villkor i välfärdsstaten

Fernqvist, S. (2013)

Under det senaste decenniet har barnfattigdom kommit att bli en alltmer framträdande problematik på den politiska agendan i Sverige. Forskning om barnfattigdom har ofta utgjorts av kartläggningar och statistiska data varför forskning om barns vardagsliv och erfarenheter i relation till ekonomisk utsatthet har efterfrågats såväl nationellt som internationellt. Syftet med avhandlingen har varit att utforska och analysera barns erfarenheter av fattigdom som en del av deras identitetsskapande samt synliggöra hur deras aktörskap kan förstås som en strategi för att hantera sin situation. Hur barnfattigdom och barnpositionen i stort förstås och framställs i en välfärdsstatlig kontext blir en relevant aspekt av dessa processer.

Analysen är baserad på en intervjustudie med 17 deltagande barn och ungdomar i åldrarna 6-18 år i familjer som är eller har varit berättigade till ekonomiskt bistånd. Syftet med intervjuerna har varit att se hur dessa barn och ungdomar upplever och hanterar ekonomisk utsatthet hemma och bland jämnåriga med fokus på deras strategier och utrymme att vara sociala aktörer. Avhandlingens teoretiska utgångspunkt är barndomssociologi och empiriska data är analyserade med en interaktionistisk ansats som belyser interaktionens betydelse och individuellt aktörskap i relation till identitetsskapande.

De strategier som deltagarna i studien ger uttryck för har tolkats utifrån en barndomssociologisk förståelse av barnpositionens begränsade handlingsutrymme, och hur deras (och andras) positionering av dem själva som barn kan skapa nya förståelser av hur fattigdomen kan hanteras. Härigenom möjliggörs en utökad problematisering av barnfattigdom genom att problematikens komplexitet belyses.

- See more at: http://www.skolporten.se/forskning/avhandling/en-erfarenhet-rikare-en-kvalitativ-studie-av-barns-strategier-och-barnfattigdomens-villkor-i-valfardsstaten/#sthash.PWtBMqSc.dpuf

Epigenetic Transmission of Holocaust Trauma: Can Nightmares Be Inherited?

Kellerman, N. P. F. (2013)

The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.

Epigenetic Transmission of Holocaust Trauma: Can Nightmares Be Inherited?

Kellerman, N. P. F. (2013)

The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.

Epigenetic Transmission of Holocaust Trauma: Can Nightmares Be Inherited?

Kellerman, N. P. F. (2013)

The Holocaust left its visible and invisible marks not only on the survivors, but also on their children. Instead of numbers tattooed on their forearms, however, they may have been marked epigenetically with a chemical coating upon their chromosomes, which would represent a kind of biological memory of what the parents experienced. as a result, some suffer from a general vulnerability to stress while others are more resilient. Previous research assumed that such transmission was caused by environmental factors, such as the parents' childrearing behavior. New research, however, indicates that these transgenerational effects may have been also (epi) genetically transmitted to their children. Integrating both hereditary and environmental factors, epigenetics adds a new and more comprehensive psychobiological dimension to the explanation of transgenerational transmission of trauma. Specifically, epigenetics may explain why latent transmission becomes manifest under stress. a general theoretical overview of epigenetics and its relevance to research on trauma transmission is presented.

Ett bra liv förutsätter att föräldrarna är rätt så aktiva” - Föräldrars perspektiv vid LSS-handläggning för barn

Berggren, A., & Karlsson, A. (2013)

The aim of this study was to describe and understand parents' perspectives in aid assessment for children according to The Swedish Act (1993:387) concerning Support and Service for Persons with Certain Functional Impairments (Lag 1993:387 om stöd och service till vissa funktionshindrade, LSS). The study took place in the county of Kronoberg, Sweden, and was based on a total of nine qualitative interviews. Four interviews were made with parents' of children who has interventions according to LSS (1993:387) and five interviews were made with LSS case workers. In our study we saw that parents' perspectives often is the largest amount of information that case workers take into account when assessing aid and as a case worker you listen to the parents perspectives to capture the child's and the family's needs. It also came clear that the parents' perspective is not only about the child's needs, but also includes the parent's own needs and their family's needs. The parents in the study felt that they made the decision about the choice of aid and considered themselves as the one who decides the family's requirements. It turned out that treatment and understanding from the case workers was important for gaining access to the best help and making parents feel listened to. Parental responsibility was of great importance for the assessment, and it often led to disagreement between parents and case workers. During the study, we saw that power existed in the relationship between case workers and parents, but that it could be moved and changed during the time of aid assessment.

Everyday Life of Young Adults With Intellectual Disabilities: Inclusionary and Exclusionary Processes Among Young Adults of Parents With Intellectual Disability

Starke, M (2013)

Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and family, and considered their families as a resource for their empowerment and development of resilience. The study participants' informal networks were composed of only a few individuals who, moreover, were mostly of dissimilar age and also included support professionals. The participants typically described themselves as excluded from others, an experience that was articulated most conspicuously in their narratives about the special schools they were attending.

Examining the impact of familiarity on faucet usability for older adults with dementia

Boger J, Craig T, Mihailidis A. (2013)

Background: Changes in cognition caused by dementia can significantly alter how a person perceives familiarity, impacting the recognition and usability of everyday products. A person who is unable to use products cannot autonomously complete associated activities, resulting in increased dependence on a caregiver and potential move to assisted living facilities. The research presented in this paper hypothesised that products that are more familiar will result in better usability for older adults with dementia. Better product usability could, in turn, potentially support independence and autonomy. Methods: This research investigated the impact of familiarity on the use of five faucet designs during 1309 handwashing trials by 27 older adults, who ranged from cognitively intact to the advanced (severe) stages of dementia. Human factors methods were used to collect empirical and self-reported data to gauge faucets' usability. Participants' data were grouped according to cognition (i.e., no/mild, moderate, or severe dementia). Logistic regression, ranking by odds, and Wald tests of odds ratios were used to compare performance of the three groups on the different faucets. Qualitative data were used in the interpretation of quantitative results. Results: Results indicated that more familiar faucets correlated with lower levels of assistance from a caregiver, fewer operational errors, and greater levels of operator satisfaction. Aspects such as the ability to control water temperature and flow as well as pleasing aesthetics appeared to positively impact participants' acceptance of a faucet. The dual lever design achieved the best overall usability. Conclusions: While work must be done to expand these findings to other products and tasks, this research provides evidence that familiarity plays a substantial role in product usability for older adults that appears to become more influential as dementia progresses. The methods used in this research could be adapted to analyse usability for other products by older adults with dementia.

Executive functions

Diamond, A. (2013)

Executive functions (EFs) make possible mentally playing with ideas; taking the time to think before acting; meeting novel, unanticipated challenges; resisting temptations; and staying focused. Core EFs are inhibition [response inhibition (self-control--resisting temptations and resisting acting impulsively) and interference control (selective attention and cognitive inhibition)], working memory, and cognitive flexibility (including creatively thinking "outside the box," seeing anything from different perspectives, and quickly and flexibly adapting to changed circumstances). The developmental progression and representative measures of each are discussed. Controversies are addressed (e.g., the relation between EFs and fluid intelligence, self-regulation, executive attention, and effortful control, and the relation between working memory and inhibition and attention). The importance of social, emotional, and physical health for cognitive health is discussed because stress, lack of sleep, loneliness, or lack of exercise each impair EFs. That EFs are trainable and can be improved with practice is addressed, including diverse methods tried thus far.

Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers

Eriksson H, Sandberg J, Hellström I. (2013)

AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia.
BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective.
METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective.
RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed.
CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns.
IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers

Experiences with using information and communication technology to build a multi-municipal support network for informal carers

Torp S., Bing-Jonsson P., Hanson E. (2013)

This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study

Henriksson A, Årestedt K. (2013)

BACKGROUND: Family caregivers in palliative care often report feeling
insufficiently prepared to handle the caregiver role. Preparedness has been
confirmed as a variable that may actually protect family caregiver well-being.
Preparedness refers to how ready family caregivers perceive they are for the
tasks and demands in the caregiving role.
AIM: The aim of this study was to explore factors associated with preparedness
and to further investigate whether preparedness is associated with caregiver
outcomes.
DESIGN: This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS: The study took place in three specialist palliative care
units and one haematology unit. A total of 125 family caregivers of patients with
life-threatening illness participated.
RESULT: Preparedness was significantly associated with higher levels of hope and
reward and with a lower level of anxiety. In contrast, preparedness was not
associated with depression or health. Being female and cohabiting with the
patient were significantly associated with a higher level of preparedness. The
relationship to the patient was significantly associated with preparedness, while
social support, place of care, time since diagnosis and age of the patients
showed no association.
CONCLUSION: Feelings of preparedness seem to be important for how family
caregivers experience the unique situation when caring for a patient who is
severely ill and close to death. Our findings support the inclusion of
preparedness in support models for family caregivers in palliative care.
Psycho-educational interventions could preferably be designed aiming to increase
family caregiver's preparedness to care, including practical care, communication
and emotional support.

Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study.

Henriksson, A., & Årestedt, K. (2013)

BACKGROUND:
Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role.
AIM:
The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes.
DESIGN:
This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS:
The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated.
RESULT:
Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association.
CONCLUSION:
Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

Factors influencing burden among non-professional immigrant caregivers: a case-control study

Gallart A, Cruz F, Zabalegui A. (2013)

gallart a., cruz f. & zabalegui a. (2013) Factors influencing burden among non-professional immigrant caregivers: a casecontrol study. Journal of Advanced Nursing69(3), 642654. doi: 10.1111/j.1365-2648.2012.06049.x Abstract Aim. To identify factors related to the burden that is experienced by untrained immigrant caregivers. Background. There is growing concern about how to provide the care required by an ageing population. Although elder care has usually been provided by family members, this role is increasingly being fulfilled by immigrant caregivers with no formal training. Design. Casecontrol study (burdened/non-burdened according to the Zarit Burden Interview). Methods. The study took place between May 2005October 2009. Anonymous questionnaires were distributed to 110 immigrant caregivers and their corresponding older care recipients (n=110), who were receiving care in their homes in Barcelona (Spain). The questionnaires included measures of burden, social support, quality of life and social integration, and items about the physical/psychological status of the care recipient and the nature of the care tasks. Two groups of immigrant caregivers were defined according to their scores on the Zarit Burden Interview: burdened (n=55) and non-burdened (n=55). Results. Burdened caregivers reported less social support, a poorer quality of life, and problems with social integration. Furthermore, 48% said that they lacked knowledge about the care task, while 44% had difficulty performing certain care tasks, which constitutes a risk situation. Conclusion. Burden among untrained immigrant caregivers may be reduced by improving their social support systems and quality of life, thereby helping to ensure the availability of the caregiver services, which society increasingly needs.

Familjehemsföräldrars erfarenheter av Paired Reading med placerade barn

Forsman, H. (2013)

The academic underachievement of looked after children is well known. By involving foster
carers in a Paired Reading intervention a Swedish project tried to address this issue,
replicating a successful British trial. The aim of my thesis was to study the variations in the
foster carers' experiences of this literacy intervention. Reading reports from 100 children
were collected and qualitative interviews with 15 foster parents were analyzed using concepts
from motivational psychology. The results revealed that although some had reported
difficulties a majority of the participants had implemented the program in an acceptable way.
Many carers had noticed improvements in the child's reading ability and some reported
improved relations, but in a few cases rigidly following the method had led to conflicts. The
interviews showed that the completion of the literacy training was conditioned on the
children's pleasure/joy in reading which in turn may require adjustments in the day-to-day
delivery of the intervention. Also carers had to see a purpose with Paired Reading in order to
be able to arouse enthusiasm in the child. The results suggest that it is possible to engage
foster parents in the improvement of foster children's literacy skills.

Family Bereavement Program (FBP) approach to promoting resilience following the death of a parent

Sandler, I.N., Wolchik, S.A., Ayers, T.S., Tein, J. & Luecken, L. (2013)

This paper describes a research-based program designed to promote resilience of parentally-bereaved children and their bereaved surviving parent. A contextual resilience model is described as the conceptual foundation of the program. The program is designed to enhance specific parenting and coping skills and to help caregivers and children accomplish goals they set for themselves at the outset of the program. The content of the twelve-sessions and the approach to teaching and supporting parents work on their program and personal goals are described. Evaluation of the program using a randomized experimental design indicates that the program is effective in promoting resilient outcomes of children and of the bereaved parent six-years following their participation in the program.

Fetal Alcohol Spectrum Disorders

Rangmar Jenny, Fahlke Claudia (2013)

Kunskapsöversikten har skrivits på uppdrag av Socialstyrelsen. Det är en sammanställning av aktuell vetenskaplig litteratur rörande psykosociala konsekvenser av alkoholrelaterade fosterskador samt preventiva aspekter på denna typ av fosterskador.

Fetal alcohol spectrum disorders in Finnish children and adolescents. Diagnosis, cognition, behavior, adaptation and brain metabolic alterations (Akademisk avhandling).

Fagerlund Å. (2013)

När en gravid kvinna dricker alkohol gör hennes foster det också. Eftersom det inte finns
någon skyddande blodbarriär kan alkohol fritt korsa moderkakan och orsaka omfattande
skador både fysiologiskt, neurologiskt och beteendemässigt på det växande fostret.
Alkoholrelaterade fosterskador går under den engelska termen Fetal Alcohol Spectrum
Disorders (FASD, Fetala alkohol spektrum störningar). Trots att alkoholrelaterade skador är
fullt möjliga att förhindra utgör de idag en av de vanligaste orsakerna till utvecklingsstörning
i västvärlden. I västländer där prevalensundersökningar har gjorts är antalet barn som
föds med FASD fler än de med autismspektrumstörningar, Downs syndrom eller cerebral
pares. I siffror handlar det om mellan 1 och 6 % av alla levande födda, vilket i Finland skulle
innebära att 600–3600 barn föds med alkoholrelaterade fosterskador varje år. Utöver de
direkta toxiska effekterna av alkohol utsätts barnen som föds med FASD ofta för en dubbel
börda i livet. Dels har barnen redan vid födseln neurologiska skador, dels föds de också
med stor sannolikhet in i en familj med minst en missbrukande förälder och en omgivning
där de utsätts för ytterligare risker i sin utveckling. Trots detta är FASD idag en starkt
underdiagnosticerad grupp inom hälso- och sjukvården.
Den här avhandlingen utgör en del av ett större multinationellt forskningsprojekt, The
Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD), som initierades av det
nationella institutet för alkoholmissbruk och alkoholism (National Institute of Alcohol Abuse and
Alcoholism, NIAAA) i USA. Det huvudsakliga syftet med den föreliggande avhandlingen var att
undersöka en kohort med barn och ungdomar med alkoholrelaterade fosterskador i Finland.
Avhandlingen består av fem studier med ett brett fokus på diagnos, kognition, beteende,
adaptiva färdigheter och avvikelser i hjärnans ämnesomsättning hos barn och unga med FASD.
Deltagarna bestod av fyra olika grupper: en grupp som varit utsatt för alkohol under
graviditeten (FASD); en IQ-matchad kontrollgrupp som huvudsakligen bestod av barn med
specifika inlärningssvårigheter (Specific Learning Disorder, SLD); och två grupper med normala
kontroller (CON1 och CON2). Deltagarna rekryterades via genomgång av medicinska journaler,
slumpmässigt urval ur det finska befolkningsregistret och e-postförfrågningar till studerande.
Med diagnoser som är såpass svåra att fastställa som de inom FASD-spektret är det av stor
betydelse att de föreliggande studierna har utförts i nära samarbete med ledande experter
på FASD (prof. Edward Riley och prof. Sarah Mattson från Center for Behavioral Teratology vid
San Diego State University, USA och prof. Eugene Hoyme från Sanford School of Medicine,
University of South Dakota, USA). Deltagarna i föreliggande studier är således mycket noggrant
undersökta och diagnosticerade. I den här avhandlingen testades för första gången de
amerikanska reviderade Institute of Medicines diagnoskriterier för FASD på en finsk population.
Kriterierna visade sig tillförlitliga i att särskilja olika undergrupper bland alkoholskadade barn.
Ett annat värdefullt hjälpmedel som användes vid diagnosticeringen var en speciellt utarbetad
skala för bedömning av de specifika dysmorfa dragen vid FASD (Studie 1).
Syftet med Studie 2 var att klargöra relationen mellan alkoholrelaterade dysmorfa drag och
allmän kognitiv kapacitet. Resultaten visade på en signifikant korrelation mellan dysmorfa
drag och kognitiv kapacitet, så att barn med större avvikelser i sin tillväxt och med mer
dysmorfa drag också tenderade att uppvisa större kognitiva svårigheter. Sambandet var
emellertid måttligt och det kan betonas att fysiologiska markörer och kognitiv kapacitet inte
alls alltid går hand i hand hos individer med FASD.
Barnen och ungdomarna i FASD-gruppen uppvisade omfattande problem i beteende och
mental hälsa jämfört med kontrollgruppen (CON1). I studie 3 utforskades närmare hurudana
risk- och skyddande faktorer som kunde associeras med beteendeproblemen i FASD-gruppen.
Studien fokuserade på diagnosrelaterade och omgivningsrelaterade faktorer. Resultaten visade
att två grupper med förhöjd risk för beteendeproblem kunde urskiljas: 1) Ju längre tid ett barn
hade spenderat intaget på barnhem desto högre risk för beteendeproblem och 2) ju mindre
dysmorfa drag ett barn med FASD hade desto mer omfattande beteendeproblem uppvisade
barnet. Resultaten understryker betydelsen av att inom hälso- och sjukvården uppmärksamma
och ge vård och adekvata insatser också (eller framför allt) till mindre synligt alkoholskadade
barn. Det är också av stor vikt att uppmärksamma behoven och välmåendet hos de barn med
FASD som växer upp på olika former av barnhem. För dessa barn verkar kombinationen av
medfödda fysiologiska och psykologiska skador tillsammans med minskad möjlighet till en nära
och kontinuerlig relation till en närstående vuxen göra dem extra utsatta och sårbara i livet.
Studie 4 fokuserade på adaptiva färdigheter så som kommunikationsförmåga, förmåga att
klara ett dagligt liv och sociala förmågor. Adaptiva färdigheter handlar med andra ord om
förmågor som gradvis hjälper en individ att klara ett självständigt liv, upprätthålla sociala
relationer och integreras i samhället. Resultaten visade att de adaptiva färdigheterna hos
barn och unga som växer upp med FASD är avsevärt sämre än hos både normalt utvecklade
barn och IQ-matchade barn med inlärningssvårigheter. Klart skilda adaptiva profiler
uppdagades där FASD-gruppen klarade sig sämre än barnen med inlärningssvårigheter
som i sin tur klarade sig sämre än barnen i den normala kontrollgruppen. Det är viktigt att
poängtera att barnen med inlärningssvårigheter presterade bättre än FASD-gruppen trots
att de kognitivt befann sig på samma nivå. Den här studien är den första att jämföra adaptiva
förmågor hos en grupp barn och unga med FASD jämfört med både en grupp IQ-matchade
barn med inlärningssvårigheter och en grupp normalt utvecklade barn.
Slutligen påvisades i studie 5 neurokemiska förändringar med hjälp av magnetisk resonansspektroskopi
(MRS) hos tonåringar och unga vuxna med FASD som kunde relateras till
alkoholbruk under fosterstadiet 14–20 år tidigare. De neurokemiska förändringarna kunde
påvisas i ett flertal områden i hjärnan: i den frontala och parietala hjärnbarken, i corpus
callosum, thalamus, i frontala områden med vit substans samt i lilla hjärnans nucleus dentatus.
Förändringarna stämmer överens med den neuropsykologiska profilen vid FASD. Glia celler (vit
hjärnsubstans) verkade mer påverkade av alkohol under fosterstadiet än neuron (nervceller).
Sammantaget kan konstateras att större samhälleliga ansträngningar och resurser borde
fokuseras på att känna igen och diagnosticera FASD och på att stöda speciellt utsatta
riskgrupper av alkoholskadade barn och unga. Utan tillräcklig intervention och stöd löper
de en stor risk för marginalisering och utslagning, vilket är kostsamt inte bara för samhället
utan också för de många barn som växer upp med FASD.

Folkhälsan i Sverige – Årsrapport 2013

Socialstyrelsen & Statens folkhälsoinstitut (2013)

Socialstyrelsens och Statens folkhälsoinstituts rapport ger en aktuell och översiktlig bild av hälsoutvecklingen och dess bestämningsfaktorer. Den visar bland annat att bland kvinnor och män 35-44 år har risken att få stroke ökat med 21 respektive 15 procent sedan 1995

Frequency of occurrence and child presence in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development

Axelsson AK, Wilder J. (2013)

Objectives:
The objective was to investigate the performance aspect of participation, operationalized as the frequency of occurrence of family activities and child presence in these activities for children with profound intellectual and multiple disabilities (PIMD) and children with typical development (TD). The focus was also on how family and child characteristics are related to the frequency of occurrence of family activities. This is part of a larger research project investigating facilitating factors for participation in children with PIMD.
Methods:
A descriptive, comparative study was performed using a questionnaire developed for the purpose.
Results:
In the families with a child with PIMD, the majority of activities occurred less often than in families with children with TD. In both groups, relationships were found between the frequency of occurrence of family activities and total family income, as well as the educational level of the parents. For children with PIMD, motor ability, cognition, health, and behaviour, were related to frequency of occurrence. Moreover, the presence of the children in the activities differed in the two groups; the children with PIMD were present in the activities less often.
Discussion:
Considering a long-term perspective, low occurrence of family activities and child presence may affect child development and everyday functioning. Knowledge about factors related to the occurrence of family activities and child presence in them, as well as an understanding of its causes, can promote the provision of everyday natural learning opportunities for children with PIMD.

Future Directions in Family and Professional Caregiving for the Elderly

Zarit, S. H. and A. M. Reamy (2013)

As the population ages and the expected wave of baby boomers settles into old age, there is a pressing need to examine the people and institutions that care for elders and the ways in which the system will need to adapt during the next 5-10 years to accommodate the needs of the elderly and of their caregivers. This paper examines future directions in this field, identifying the major issues from two perspectives: family caregiving and professional caregiving. Despite extensive research on caregiving, more attention to a series of methodological issues is needed, as is more extensive evaluation of promising intervention models in community and institutional settings. Effective strategies to lower caregiver distress and improve the quality of care can be implemented in efficient ways that manage costs, but the argument for innovations must be made based on efficacy.

Föräldraröster

Rausch, B. (2013)

InledningUnder många år har Föräldrautbildningen/anhörigutbildningen vid Forum Funktionshinder engagerat socionomBerit Rauschsom föreläsare för föräldrar på temat "Det finns en framtid –men vad gör man av allt det som känns tungt?". Berit har också lett kurser i konsultativt förhållningssätt som riktat sig till paramedicinsk personal inom Habilitering & Hälsa och handlett personal. Berit är själv förälder till en idag vuxen dotter med funktionsnedsättning. Utifrån sina erfarenheter såg Berit ett behov av att fördjupa kunskapen om föräldrars situation genom föräldraintervjuer för att sedan kunna använda den kunskapen som underlag för diskussion och kompetensutveckling för personalen inom Habilitering & Hälsa.Frågan om en studie diskuteradesinom ledningsgruppen för Utvecklingsforum och i FoU-rådet vid flera tillfällen. Några synpunkter som framkom var att Fokus bör ligga på riskfaktorer och kritiska punkter. Hur identifierar man dem? Hur fångar man upp? I diskussion med verksamhetschef och Utvecklingsforum kom vi överens med Berit Rausch om att genomföra projektet Föräldraröster. BakgrundBerit Rausch, initiativtagare till projektet Föräldraröster, har mångårig erfarenhet av såväl föräldragrupper som handledning av personal inom bland annat Habilitering &Hälsa. Föräldrar som får ett barn med funktionsnedsättning genomgår eninre process som till stora delar påminner om en sorgeprocessnär man utsätts för en förlust av något slag.Även i handledningssituationer blir denna process aktuell när situationer som personal har att handskas medska diskuteras. Sjukgymnaster, logopeder, arbetsterapeuter etc saknar utbildning i psykosocialt arbete.Isamtal med nyckelpersoner inom Habilitering &Hälsa har framkommit att organisationenhar intresse av att titta närmare på vad det är som gör att vissa föräldrar kommer vidare i sin process efter att ha fått ett barn med funktions-nedsättning, medan andra "fastnar" i någon av krisens faser, förnekelse, ilska eller sorg. Frågeställningen ska ses i relation till habiliteringens utbud och arbetssätt samt förhållningssätt och bemötande av personer i kris.Vi såg det också som oerhört viktigt att förmedla den unika kunskap och kompetens som föräldrar har, till all personal inom Habilitering & Hälsa.
SyfteAtt utforska vilka kritiska punkter som föräldrar beskriver för hur de tagit sig vidare/"fastnat"ochhur föräldrar utifrån sin unika situation ser på Habilitering & Hälsas utbud, insatser, förhållningssätt och bemötande.ProjektmålAtt fördjupa kunskapen om riskfaktorer,kritiska punkter och föräldrars behov av stöd i olika faser. Att presentera resultatet av intervjuernai en sammanfattande rapport. Att inspirera till kompetensutveckling hos personal när det gäller bemötande och till anpassning av habiliteringens insatser.MetodBerit Rausch har gjort en kvalitativstudie bestående av djupintervjuer med 10 föräldrapar utifrån ett semi-strukturerat frågeformulär.Anhörigutbildningen vid Forum Funktionshinder mejlade 338 föräldrar som hade anmält sig till anhörigutbildningar under hösten 2010 och ställde frågan om de var intresserade av att bli intervjuade av Berit Rausch. 36 föräldrar/föräldrapar svarade att det var intresserade. Tillsammans med Berit valdes 11 föräldrar/föräldrapar ut för intervju. Urvalet gjordes utifrån ålder och diagnos för att i möjligaste mån få en så stor spridning som möjligt.10 familjer intervjuades.ProjektorganisationProjektgruppens medlemmar har bestått av Eva Norberg, informationschef (projektägare tom januari 2012) Barbro Lagander, verksamhetschef VO Stockholm (projektägare from februari 2012), Marie Bökman, konsulent vid Forum (projektledare), Kristina Eklund, konsulent vid Forum och Barbro Sjöström Miljand, enhetschef Kris-och samtalsmottagningen, Länscenter. ProjektresultatProjektet har bidragit medett skriftligt material som beskriver riskfaktorer och olika sätt att handskas med sin livssituation, vilket kan bidra till ökad förståelsen för föräldrars olika sätt att skapa en fungerande vardag. Föräldraröster kan användas i personalutbildningen och utveckling av metoder för föräldrastöd.

Gender differences when parenting children with autism spectrum disorders: A multilevel modeling approach

Jones L, Totsika V, Hastings RP, Petalas MA. (2013)

Parenting a child with autism may differentially affect mothers and fathers. Existing studies of mother–father differences often ignore the interdependence of data within families. We investigated gender differences within-families using multilevel linear modeling. Mothers and fathers of children with autism (161 couples) reported on their own well-being, and their child's functioning. Mothers reported higher levels of distress compared with fathers, and child behavior problems predicted psychological distress for both mothers and fathers. We found little evidence of child functioning variables affecting mothers and fathers differently. Gender differences in the impact of child autism on parents appear to be robust. More family systems research is required to fully understand these gender differences and the implications for family support. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Good Grief: Exploring the Dimensionality of Grief Experiences and Social Work Support

Gordon, T. A. (2013)

This study explored the dimensionality of grief with a sample (n = 180) of caregivers of deceased loved ones; utilizing a positive grief scale, additional data were collected about perceptions of social worker practice behaviors in end-of-life care. Results revealed the presence of both positive and negative aspects of grief. Supportive social work practice behaviors at the end of life were present at least 52.2% of the time and specific practices were analyzed as to their association with positive or negative grief reactions. Results from this study suggest that grief is a multidimensional process and that social work practice behaviors can support positive aspects of grief with clients in all fields of practice.

Grief related to the experiences of being the sibling of a child with cancer

Jenholt Nolbris, M., Enskär, K., & Hellström, AL. (2013)

Abstract
BACKGROUND:
Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support.
OBJECTIVE:
The aim of this study was to describe siblings' reports of grief related to the experience of having a brother or sister with cancer.
METHODS:
A qualitative descriptive method was chosen based on open-ended interviews with 29 siblings aged 8 to 24 years. Qualitative content analysis was applied to the interview data.
RESULTS:
Four categories of grief were identified: anticipatory grief after receiving information about the cancer diagnosis, grief and concern about the ill sibling's loss of a normal life, grief about being unimportant and forgotten in the family, and grief that continues after the sibling's death as a kind of bond.
CONCLUSION:
Despite variations in age and gender among participating siblings, their thoughts were similar. Grief was experienced differently from the time of the diagnosis onward, in the form of concerns related to the illness and situation of the ill sibling. Grief related to sibling bonds remained after death.
IMPLICATION FOR PRACTICE:
This study recommends offering siblings realistic information about their ill sibling and support for them in their situation from diagnosis and continuously thereafter. To meet the needs of well siblings, it is necessary to ask the siblings about their thoughts and discuss with them their emotions and worries.

His helping hands-adult daughter's perceptions' of fathers with caregiving responsibility

Eriksson H, Sandberg J, Holmgren J, Pringle K. (2013)

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.

I väntan på uppehållstillstånd

Björnberg, Ulla (2013)

Hur barn påverkas av migration är något vi har relativt liten kunskap om, både nationellt och internationellt. I Norden lever de flesta barn sina liv som barn gör mest, i en vardag som rymmer lek, skola och familjeliv. Men det finns erfarenheter som påtagligt påverkar tillvaron för vissa barn; migration är en sådan erfarenhet.
Vilka strategier utvecklar barn för att hantera sin situation i

Identification of core functioning features for assessment and intervention in Autism Spectrum Disorders

Castro S, Pinto AI. (2013)

Purpose: Framed within a biopsychosocial approach, this study aimed to identify the main functionality dimensions that experts in the field of child development and child psychopathology considered as essential in the assessment-intervention process with young children with Autism Spectrum Disorders (ASD), using the International Classification of Functionality, Disability and Health for Children and Youth. Method: The Delphi method was used to obtain consensus among experts regarding the essential functionality features for the rehabilitation of young children with ASD. Therefore, web-based three-round survey was developed. Results: There are more functionality features identified as more essential for the age group 3–6 than from the group birth-2 years of age. 49.4% of activities and participation dimensions were regarded as essential by experts, while only 13.9% of body functions were selected. 39.9% of environmental factors were also marked by experts as essential. Conclusions: Pervasive Developmental Disorders (PDD) are classified in diagnostic manuals-DSM-IV-TR and ICD-10. These classifications are valuable to detect signs/symptoms of health conditions; however, they are often not sufficient to develop individualized interventions. More functional information is needed to complement diagnostic data. The identified functionality dimensions of the ICF-CY complement diagnosis by differentiating relevant functioning aspects in all life domains, according to the biopsychosocial model and should always be addressed in the process of rehabilitation of young children with ASD.
Implications for Rehabilitation
The biopsychosocial approach is the most complete way of conceptualizing human development and disability; combining medical, social and functional perspectives.
The ICF-CY specifies strengths and areas for improvement in the functionality of each individual, according to the biopsychosocial model of disability.
This paper identifies core functioning features for the rehabilitation of young children with Autism Spectrum Disorders, in all dimensions of life, according to the biopsychosocial approach to disability.

Implementing a training intervention to support caregivers after stroke: a process evaluation examining the initiation and embedding of programme change

Clarke DJ, Godfrey M, Hawkins R, Sadler E, Harding G, Forster A, et al. (2013)

Background
Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.

Results
Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.

Conclusions
Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory's constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.

Improved Strain and Psychosocial Outcomes for Caregivers of Individuals with Dementia: Findings from Project ANSWERS

Judge KS, Yarry SJ, Looman WJ, Bass DM. (2013)

This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.

Improving partnerships with families and carers in in-patient mental health services for older people: a staff training programme and family liaison service

Stanbridge RI, Burbach FR, Rapsey EHS, Leftwich SH, McIver CC. (2013)

In spite of policies advocating the involvement of families in the care of mental health service users in the UK, there are few examples of initiatives to develop staff confidence and skills in partnership working. This article describes a whole team training initiative and family liaison service to promote family inclusive working on in-patient wards for older people in Somerset, UK. A three-day staff-training programme is described and training outcomes are reported. Staff report a substantial increase in confidence and family meetings held. A pre-and post- training case note audit shows increased consideration of the needs of families. To further increase face to face meetings with families a family liaison service has been established, whereby a staff member with systemic family therapy training joins ward staff to hold family meetings as part of the assessment/admission process. Evaluation of this service has shown it to be effective with positive feedback from families and staff.

Informal caregivers' conceptions of daily life with a spouse having chronic obstructive pulmonary disease

Lindqvist, G. (2013)

The overall aim of this thesis was to explore informal caregivers' daily life with particular focus on those living with a spouse who has Chronic Obstructive Pulmonary Disease (COPD) in different grades, mild to severe, based on the ill person's main concern. The study design was explorative, comparative and descriptive. The thesis included a literature review of 45 scientific articles and semi-structured interviews with 23 patients suffering from COPD, and 21 women and 19 men living with a spouse suffering from COPD. Data were analysed using content analysis, grounded theory, and phenomenography. Main findings: Men and women living with a spouse suffering from mild COPD did not experience changes in their daily life, and were not in need of support. It was when the COPD gradually escalated that their daily life was affected and they needed support. The caregiving women conceived that their daily life was socially restricted, they had changed roles, changes in health and changes in the couple's relationship. The caregiving men's daily life was conceived as burdened, restricted and the partner relationship was affected. The men's attitude was to continue with their own life and own activities, and their approach to their caregiving situation was to view themselves as "Me and my spouse". The main concern for people suffering from COPD was feelings of guilt due to self-inflicted disease associated with smoking habits. The thesis shows that there are differences in informal caregiving between males and females. Conclusion: This thesis shows that there are differences in male and female caregiving for a spouse suffering from COPD. The caregivers conceive and handle the caregiving situation in different ways. It is central that health professionals and municipality consider this along with the individual needs that are related to the development of the COPD. There is a need to identify the person who suffers from COPD and their spouses from the first contact onwards, to regularly follow the development of their situation and need of support.

Intimate Partner Violence and Children's Memory

Gustafsson, H. C., Coffman, J. L., Harris, L. S., Langley, H. A., Ornstein, P. A., & Cox, M. J. (2013)

The current study was designed to examine the relation between intimate partner violence (IPV) and children's memory and drew from a socioeconomically and racially diverse sample of children living in and around a midsized southeastern city (n = 140). Mother-reported IPV when the children were 30 months old was a significant predictor of children's short-term, working, and deliberate memory at 60 months of age, even after controlling for the children's sex and race, the families' income-to-needs ratio, the children's expressive vocabulary, and maternal harsh-intrusive parenting behaviors. These findings add to the limited extant literature that finds linkages between IPV and children's cognitive functioning and suggest that living in households in which physical violence is perpetrated among intimate partners may have a negative effect on multiple domains of children's memory development.

Jag är med! Om personlig assistans och barns delaktighet i familjeaktiviteter.

Wilder J, Axelsson AK. (2013)

Boken handlar om att underlätta möjligheterna till delaktighet i familjens vardagsliv för barn och ungdomar som har omfattande funktionsnedsättningar. Boken bygger på erfarenheter och tankar från föräldrar till barn med personlig assistans samt deras personliga assistenter. Förhoppningen är att deras tips och idéer ska bidra till upptäckten av nya situationer och samspelsmöjligheter i vardagen som man kanske inte riktigt fått syn på än.

Boken erbjuder fördjupning om delaktighet, barns lärande och utveckling i familjen och konkreta tips om hur man kan arbeta för att underlätta barns delaktighet. Boken kan användas som en huvudbok för samtal om hur vardagslivet kan gestalta sig när barn har personlig assistans.

Boken riktar sig till föräldrar, personliga assistenter, anhöriga och personer som arbetar med barn och ungdomar som har omfattande funktionsnedsättningar. Författare är Jenny Wilder, forskare vid högskolan i Jönköping och forskare/ möjliggörare på Nationellt kompetenscentrum anhöriga (Nka), Anna Karin Axelsson, doktorand vid högskolan i Jönköping och Maggan Carlsson, handledare på Föreningen JAG.

Motiverande samtal: att hjälpa människor till förändring

Miller W, Rollnic S. (2013)

Detta är en komplett guide till motiverande samtal, MI, metoden som hjälper människor till förändring. Denna tredje utgåva är helt omarbetad och innehåller till största del nytt material eftersom MI genomgått en så snabb och omfattande utveckling.

Boken utgår från fyra centrala processer inom MI att engagera, fokusera, framkalla och planera för förändring. Illustrativa fallbeskrivningar och dialoger visar hur metoden kan användas inom en mängd olika områden. Författarna redogör även för metodens goda vetenskapliga stöd, hur man kan lära sig MI och använda MI tillsammans med andra metoder.

MI utmärks av betoningen på respektfullt samarbete, att väcka klientens egen motivation och att respektera klientens autonomi och val. I denna nya utgåva lyfts även medkänsla, compassion, fram som en viktig del av andan inom MI.

Boken vänder sig till rådgivare, sjuksköterskor, kriminalvårdare, socialsekreterare, coacher, lärare, HR-personal, psykologer, psykoterapeuter och alla andra som vill hjälpa människor till förändring.

Boken är skriven av grundarna till motiverande samtal:

William R. Miller, fil.dr, professor emeritus i psykologi och psykiatri vid universitetet i New Mexico, USA.

Stephen Rollnick, fil.dr, professor i hälso- och sjukvårdskommunikation på medicinska fakulteten vid universitetet i Cardiff, Wales, Storbritannien.

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Myocardial infarction after the death of a sibling: A nationwide follow-up study from Sweden

Rostila, M. and Saarela, J., & Kawachi, I. (2013)

Death of a sibling represents a stressful life event and could be a potential trigger of myocardial infarction (MI). We studied the association between loss of an adult sibling and mortality from MI up to 18 years after bereavement.
We conducted a follow-up study for Swedes aged 40 to 69 years between 1981 and 2002, based on register data covering the total population (N=1 617 010). Sibling deaths could be observed from 1981 and on. An increased mortality rate from MI was found among women (1.25 CI 1.02 to 1.54) and men (1.15 CI 1.03 to 1.28) who had experienced death of an adult sibling. An elevated rate some years after bereavement was found among both women (during the fourth to sixth half-years after the death) and men (during the second to sixth half-years after the death), whereas limited support for a short-term elevation in the rate was found (during the first few months since bereavement). External causes of sibling death were associated with increased MI mortality among women (1.54 CI 1.07 to 2.22), whereas nonexternal causes showed associations in men (1.23 CI 1.09 to 1.38). However, further analyses showed that if the sibling also died from MI, associations were primarily found among both women (1.62 CI 1.00 to 2.61) and men (1.98 CI 1.59 to 2.48).
Our study provided the first large-scale evidence for mortality from MI associated with the death of a sibling at an adult age. The fact that findings suggested associations primarily between concordant causes of death (both died of MI) could indicate genetic resemblance or shared risk factors during childhood. Future studies on bereavement should carefully deal with the possibility of residual confounding.

Funktionshindrade 1988-1999

Statistiska centralbyrån, SCB (2003)

Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.

Funktionshindrade 1988-1999

Statistiska centralbyrån, SCB (2003)

Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.

Group interventions for children at-risk from family abuse and exposure to violence

Johnston, J.R. (2003)

This paper describes the rationale, content, and preliminary data on outcome effectiveness of a therapeutic curriculum designed for groups of children from highly conflicted and violent families, implemented in family agency and school settings. Data for 223 children (ages 5–14 years, most of whom were from single-parent, indigent, ethnic minority families) who participated in the study indicate that the majority had been exposed to multiple types of stressful and traumatic events. These include separation and loss of a parent or caretaker, exposure to spousal and child abuse, neighborhood violence, and having a family member in trouble with the law. The absence of a control group makes it difficult to determine to what extent the positive outcomes can be attributed to the group intervention. However, a pre- and post-assessment of the children's behavioral problems and social competence by clinicians, teachers, and parents showed significant improvement in their functioning over a six-month follow-up. Conclusions are drawn as to the basic elements of group interventions that are ecologically and economically.

Ifrågasatta fäder. Olika bilder av fäder till socialt utsatta barn

Bangura Arvidsson, M. (2003)

Faderskap är en familjepolitisk angelägenhet där staten går in och intervenerar och på så sätt fostrar fäder. Tyngdpunkten ligger på att uppmuntra fadersnärvaro och att förmå frånvarande fäder att ta ansvar för sina barn. Detta ger oss en bild av vad som uppfattas som bra fäder och vad som avviker från normen. Den sociala barnavården är en kontext som verkar inom den socialpolitiska, men på ett mer direkt sätt griper in i individens liv. I litteratur och forskning inom socialt arbete framstår ifrågasatta fäder som frånvarande i dubbel bemärkelse. Att de knappast syns i litteraturen förstärker en allmän uppfattning om att fäder till socialt utsatta barn är frånvarande även för sina barn. Många fäder är förvisso frånvarande, men en annan anledning till att ifrågasatta fäder inte syns är modersfixering och kvinnodominans inom den sociala barnavården. I avhandlingen presenteras olika bilder av ett faderskap som är relativt outforskat, nämligen ifrågasatta fäder, alltså fäder vars barn utretts av sociala myndigheter. Utifrån studier av 40 barnavårdsutredningar och intervjuer med 13 socialsekreterare (på två socialkontor) och 19 pappor ges bl.a. svar på vad det står skrivet om fäder i socialtjänstens utredningar; hur socialsekreterare ser på sitt arbete vad gäller fäder; samt hur pappor till socialt utsatta barn upplever sitt eget faderskap, relationen till sina barn och kontakten med sociala myndigheter. Bilderna av ifrågasatt faderskap i de tre delstudierna, men i synnerhet de bilder som kom fram i intervjuerna med socialsekreterarna och papporna, präglas av kluvenhet och ambivalens. Det beror på olikheter mellan den familjepolitiska kontexten och den kontext som den sociala barnavården omfattas av, i tolkningarna av vad som är barns bästa när det gäller kontakt med sina fäder. Bilden av fäder i barnavårdsutredningarna framstod som fragmentarisk och bristfällig, men i den information som fanns framkom en uppfattning om att barn behöver fäder. De bilder som skymtade fram var av fäder som å ena sidan närvarande, ansvarsfulla, och till glädje för barnet, å andra sidan oansvariga, våldsamma, i konflikt med barnets mor, skrämmande, frånvarande och efterlängtade. Jag urskiljde tre teman för vad ett gott faderskap innebär. Dessa är närvaro, ansvar och gränssättning. Genom att involvera fäderna i utredningen och dokumentera det, visade socialsekreterarna att de lever upp till vad som förväntas av dem utifrån den generella socialpolitiska diskursen om fäder, nämligen att stärka fäders relation till sina barn. Å andra sidan har socialsekreterarna eget handlingsutrymme att avgöra om fäder ska kontaktas eller inte i de fall de inte är vårdnadshavare. Bilden av fäder i intervjuerna med socialsekreterarna präglades av ambivalens mellan de olika tolkningarna av barns bästa. Det handlar å ena sidan om en uppfattning om barns bästa utifrån socialpolitiska intentioner. Utifrån detta framhöll socialsekreterarna umgänge mellan barn och far som viktigt. Å andra sidan handlar det om att barn kan behöva skyddas från sina fäder, vilket är den verklighet som socialsekreterarna också möter i sitt arbete. Samtidigt visade sig också en kluvenhet mellan upprätthållandet av den traditionella respektive den moderna fadern genom att socialsekreterarna upprätthöll traditionella könsrollsmönster samtidigt som de försökte fostra moderna fäder. De hade snarlika bedömningskriterier för fäder och mödrar. Dessa baserades på föreställningar om modrande egenskaper. De ställde emellertid lägre krav på fäderna eftersom de inte förväntades uppnå dem i samma utsträckning som mödrarna. I intervjuerna med socialsekreterarna återkom de tre temana för gott faderskap, nämligen närvaro, ansvar och gränssättning. Men även ett fjärde tema blev tydligt, nämligen att barn behöver sina fäder för att ha tillgång till en manlig förebild. Socialarbetarkåren består mestadels av kvinnor. Kvinnodominansen inom den sociala barnavården sågs som ett problem samtidigt som några socialsekreterare menade att skillnader i ålder eller etniskt ursprung var lika betydelsefullt som kön i deras kontakt med fäder. Socialsekreterarna uttryckte acceptans för avvikande beteende hos fäderna. Vilka beteenden som accepterades var olika i A-by respektive B-stad beroende på vilka fäder de mötte. Socialsekreterarna i A-by hade mest frånvarande fäder att förhålla sig till. I B-stad mötte socialsekreterarna nästan bara närvarande invandrarfäder. Jag menar att socialsekreterarnas kontakt med invandrarfäder har betydelse för sättet att betrakta faderskap och att det innebär ett annat slags socialt arbete med fäder i B-stad än i A-by. B-stads möte med aktiva (i flera fall alltför aktiva) invandrarfäder och även misshandlande invandrarfäder gav en annan bild av fäder och innebar en annan verklighet att förhålla sig till än den i A-by. Pappornas bild av sitt eget faderskap präglas också av kluvenhet och ambivalens. Papporna känner sig missförstådda av sociala myndigheter. De uttryckte desperation, maktlöshet och kände sig stämplade. De måste kämpa för att få vara aktiva och närvarande fäder för sina barn och att bli sedda som det. Dessutom ifrågasätter flera av papporna sig själva som fäder. I synnerhet de pappor som missbrukar eller har missbrukat är näst intill skoningslösa i beskrivningarna av sig själva och hur de har behandlat sina barn. Flera hade erfarit att barn är oförenligt med missbruk. Det innebar antingen att de var känslomässigt frånvarande för barnen trots att de var fysiskt närvarande eller att de var fysiskt frånvarande. Pappornas bilder är färgade av stark längtan efter Svenssonliv d.v.s. kärnfamiljsliv. Jag menar att papporna i vissa avseenden kan ses som marginaliserade. Å andra sidan ger papporna en bild av sig själva som normala fäder. De beskriver gott faderskap som att vara närvarande, aktiva, manliga förebilder och att kunna sätta gränser, men de gör det i en annorlunda betydelse än socialsekreterarna. Flera av dem menar att de lever upp till det, även om det är svårt ibland. Liksom fäder i allmänhet, känner de osäkerhet i sin fadersroll och menar att relationen till sina egna fäder haft betydelse, men kanske använder papporna i större utsträckning sina egna fäder som negativt exempel. Modern hade större betydelse än väntat. De flesta var glada för att bli pappor, var med vid förlossningen och beskrev den med mycket positiva ord. De menade att de mognat med faderskapet och att livet fått en annan mening. Barnen hade en viktig plats i deras liv och de upplevde att de betyder mycket för sina barn och att de är viktiga som pappor för dem. Förutom närvaro, ansvar, gränssättning och förebilder, betonar papporna känslomässiga aspekter som viktiga för faderskapet. Bilden av det normala faderskapet betyder sannolikt mer för pappor med en fot i marginalen. Svenssonlivet framställs på ett idealiserat sätt och ett näst intill ouppnåeligt mål. Det kan uppstå svårigheter med gränssättning gentemot barnen när papporna ska ta igen tidigare brister i faderskapet. De upplever en kluvenhet mellan missbruk och barn och känner oro och skuld inför sina barn. Samtidigt ser de att deras erfarenheter som ifrågasatta fäder har fört med sig värdefulla erfarenheter som inte fäder i allmänhet har. Avhandlingen visar att bilden av fäder till socialt utsatta barn som huvudsakligen frånvarande är missvisande. Snarare finns det en variation som är svår att se utan att tala med fäderna själva. Mer kunskap om fädernas perspektiv och socialtjänstens bilder av ifrågasatt faderskap kan leda till en bättre kommunikation mellan fäder och socialtjänsten. Det kan i sin tur stärka socialt utsatta barns livssammanhang.

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.

Kommunernas insatser för personer med psykiska funktionshinder

Socialstyrelsen (2003)

Psykiatrireformen trädde i kraft 1995. Reformen syftade till att förbättra livssituationen för personer med psykiska funktionshinder och öka deras möjligheter till gemenskap och delaktighet i samhället. Reformen omfattar främst personer som bedöms ha långvariga och allvarliga funktionsnedsättningar p.g.a. en psykisk sjukdom och som är i behov av stöd-, vård- och rehabiliteringsinsatser för att få en bättre livssituation. De åtgärder som föreslogs i propositionen skulle inriktas på att ge ett mer effektivt och samordnat samhällsstöd till målgruppen. Kommunernas ansvar förtydligades när det gäller att planera och samordna de insatser som personer med psykiska funktionshinder behövde. Förtydligas gjorde också kommunernas ansvar för att utveckla boendeformer och verksamheter för sysselsättning.

Regeringen konstaterade dock 2003 att det fortfarande finns brister i den psykiatriska vården och den sociala omsorgen. I oktober 2003 tillkallade därför regeringen (dir. 2003:133) en nationell psykiatrisamordnare med uppgift att se över väsentliga frågor inom vård, social omsorg och rehabilitering av psykiskt sjuka och personer med psykiska funktionshinder.

Socialstyrelsens utvärdering av psykiatrireformen (1999) visade att den hade fått en god start men ännu inte "satt sig". Det ansågs dock viktigt att reformarbetet fortsatte på bred front både lokalt och nationellt. I utvärderingen konstaterades vidare att det behövdes en aktiv, tydlig och sammanhållen tillsyn för att stödja en god verksamhetsutveckling.

Inom ramen för det Nationella programmet för tillsyn över socialtjänsten togs 2001 ett första steg till en utveckling av tillsynen i denna riktning. Länsstyrelserna och Socialstyrelsen beslutade då att kraftsamla sina resurser i en gemensam tillsyn över kommunernas insatser för personer med psykiska funktionshinder. Även kommunernas ansvar för hälso- och sjukvård har ingått i tillsynen. Kraftsamlingen har genomförts i form av ett tillsynsprojekt under åren 2002–2004. Samtliga tjugoen länsstyrelser har deltagit, dock i olika omfattning. Fyra delgranskningar har genomförts:

Tillsyn av samtliga kommuners planering av verksamheten för personer med psykiska funktionshinder på ledningsnivå, våren 2002.
Tillsyn av socialtjänstens arbete med enskilda personer med psykiska funktionshinder i ett urval av kommuner, 2002–2003.
Tillsyn av kvalitet och innehåll i verksamheter för boende och sysselsättning i ett urval av kommuner, 2002–2003.
Uppföljning av den första delundersökningen på några problemområden, hösten 2004.
För att åstadkomma en kraftsamling krävs även en samverkan mellan den sociala tillsynens aktörer och tillsynen över kommunernas hälso- och sjukvård. För det senare svarar Socialstyrelsens sex regionala tillsynsenheter. Även kommunernas ansvar för viss hälso- och sjukvård ingår därför i tillsynen.

Projektet har haft expertstöd från Socialpsykiatriskt kunskapscentrum i Västerbotten. En referensgrupp till tillsynsprojektet med representanter från Riksförbundet för Social och Mental Hälsa (RSMH) och Schizofreniförbundet har följt tillsynen och deltagit i såväl planeringen av tillsynsprojektet som i analysen av resultatet.

Tillsynsfrågor
De områden som granskats i tillsynen utgår från kommunernas ansvar för personer med psykiska funktionshinder. Huvudfrågan i tillsynen har varit: Är verksamheten så beskaffad att tillräckligt goda förutsättningar skapas för att personer med psykiska funktionshinder "får möjlighet att delta i samhällets gemenskap och att leva som andra" (5 kap. 7 § SoL)? Fyra huvudfrågor har ansetts vara centrala för tillsynen. De är:

Tar kommunerna sitt ansvar för att skaffa sig kännedom om personer med psykiska funktionshinder och nå de personer som har behov av socialtjänstens insatser?
Tar kommunerna sitt ansvar att styra och planera sin verksamhet för personer med psykiska funktionshinder?
Tar kommunerna sitt ansvar att tillhandahålla ett varierat utbud av insatser med god kvalitet?
Tar kommunerna sitt ansvar för att enskilda personer med psykiska funktionshinder får ett behovsstyrt, samordnat och rättssäkert stöd?

Less is more: meta-analyses of sensitivity and attachment interventions in early childhood

BAKERMANS-KRANENBURG, M. J., VAN, I. M. H. & JUFFER, F. (2003)

Is early preventive intervention effective in enhancing parental sensitivity and infant attachment security, and if so, what type of intervention is most successful? Seventy studies were traced, producing 88 intervention effects on sensitivity (n = 7,636) and/or attachment (n = 1,503). Randomized interventions appeared rather effective in changing insensitive parenting (d = 0.33) and infant attachment insecurity (d = 0.20). The most effective interventions used a moderate number of sessions and a clear-cut behavioral focus in families with, as well as without, multiple problems. Interventions that were more effective in enhancing parental sensitivity were also more effective in enhancing attachment security, which supports the notion of a causal role of sensitivity in shaping attachment.

Outcome studies of family therapy in child and adolescent depression

Cottrell D. (2003)

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

Overview of fetal alcohol spectrum disorders for mental health professionals

Clarke ME, Gibbard WB. (2003)

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

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

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

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

Parenting of children with Attention-Deficit/Hyperactivity Disorder (ADHD): The role of parental ADHD symptomatology

Harvey, E., Danforth, J. S., Eberhardt McKee, T., Ulaszek, W. R., & Friedman, J. L. (2003)

OBJECTIVE:
The present study examined the relation between parental ADHD symptomatology and parent-child behavior among 46 mothers and 26 fathers of ADHD children.

RESULTS:
Fathers' self-reports of inattention and impulsivity were strongly associated with self-reports of lax parenting both before and after parent training, and with self-reports of overreactivity after parent training. Fathers' impulsivity was also associated with more arguing during audiotaped observations of parent-child interactions prior to parent training. Mothers' self-reports of inattention were modestly associated with self-reports of laxness before and after parent training. Prior to parent training, there were non-linear relations between mothers' inattention and observations of mother-child behavior, with mothers who reported moderate levels of inattention engaging in the most negative parent-child interactions. After parent training, these relations were linear, with the mothers who reported the most inattention engaging in the most negative parent-child interactions. These results were weakened but were generally still significant when parental depression and alcohol use were controlled.

Patterns of interaction between children with physical disabilities using augmentative and alternative communication systems and their peers

Clarke, M., & Kirton, A. (2003)

Developing peer relationships in school is an essential part of growing up. Many children who have little or no functional speech are provided with augmentative and alternative communication (AAC) systems such as speech synthesizers and books and charts of symbols/pictures/words. Such children face many barriers to communication and to developing peer relationships. To date there exists little understanding of the characteristics of interaction between children using AAC and their speaking peers. This paper reports findings from an analysis of interactions between 12 children with physical disabilities using AAC systems and their speaking peers in school. Analysis identifies the primary structures, functions, and modes of communication used by both partners in one-to-one conversation.

Play and expressive therapies to help bereaved children: individual, family and group treatment

Webb, N.B. (2003)

Different types of expressive therapies permit bereaved children to express and process their feelings through a variety of child‐friendly non‐verbal methods such as art, creative writing, and music. The selection of a particular method depends on considerations related to the particular needs of each child, the circumstances of the death, and the family/community narrative about it. This article demonstrates how expressive therapies may be used in individual, family, or group sessions which, through play and other modes of expression, provide children with an opportunity to communicate feelings about and reactions to their bereavement experiences in symbolic form.

Practitioner Review: Computerized assessment of neuropsychological function in children: clinical and research applications of the Cambridge Neuropsychological Testing Automated Battery (CANTAB)

Luciana M. (2003)

BACKGROUND:
Computers have been used for a number of years in neuropsychological assessment to facilitate the scoring, interpretation, and administration of a variety of commonly used tests. There has been recent interest in applying computerized technology to pediatric neuropsychological assessment, which poses unique demands based on the need to interpret performance relative to the child's developmental level.
FINDINGS:
However, pediatric neuropsychologists have tended to implement computers in the scoring, but not administration, of tests. This trend is changing based on the work of experimental neuropsychologists who frequently combine data obtained from test batteries with lesion or neuroimaging data allowing descriptions of brain-behavior relations to be made with increasing confidence. One such battery is the Cambridge Neuropsychological Testing Automated Battery (CANTAB), and current studies in which the CANTAB has been used to measure executive functions in children are reviewed.
CONCLUSIONS:
Computerized batteries of this type can record aspects of performance that are difficult for psychometrists to achieve, and these may reflect activity in developing neural networks with more sensitivity than can be achieved with traditional tests. However, before computerized test administration becomes a routine part of pediatric neuropsychological assessment, several obstacles must be overcome. Despite these limitations, it is concluded that computerized assessment can improve the field by facilitating the collection of normative and clinical data.

Psychopathology and Substance Abuse in Parents of Young Children With Attention-Deficit/Hyperactivity Disorder

Chronis, A. M., Lahey, B. B., Pelham, W. E., Kipp, H. L., Baumann, B. L., & Lee, S. S. (2003)

OBJECTIVE:
To compare the prevalence of psychological disorders in parents of young children with and without attention-deficit/hyperactivity disorder (ADHD) and comorbid disruptive behavior disorders (DBD).
METHOD:
Subjects included 98 three- to seven-year-old children with DSM-IV ADHD (68 with ADHD and comorbid oppositional defiant or conduct disorder [ADHD+ODD/CD]) and 116 non-ADHD comparison children recruited in 1995-96 during the first wave of a longitudinal study. Biological mothers were administered interviews to assess ADHD and DBD in their children and mood, anxiety, and substance use disorders in themselves. In addition, they were queried about symptoms of childhood ADHD and DBD, and antisocial personality disorder in themselves and their children's biological fathers.
RESULTS:
Child ADHD was associated with increased rates of maternal and paternal childhood ADHD relative to comparison children. Child ADHD+ODD/CD was associated with maternal mood disorders, anxiety disorders, and stimulant/cocaine dependence, and paternal childhood DBD. Mothers of children with ADHD+ODD/CD also reported increased drinking problems in their children's fathers.
CONCLUSIONS:
These findings indicate that many young children with ADHD, particularly those with comorbid ODD/CD, require comprehensive services to address both their ADHD and the mental health needs of their parents.

Psychopathology and Substance Abuse in Parents of Young Children With Attention-Deficit/Hyperactivity Disorder

Chronis, A. M., Lahey, B. B., Pelham, W. E., Kipp, H. L., Baumann, B. L., & Lee, S. S. (2003)

OBJECTIVE:
To compare the prevalence of psychological disorders in parents of young children with and without attention-deficit/hyperactivity disorder (ADHD) and comorbid disruptive behavior disorders (DBD).
METHOD:
Subjects included 98 three- to seven-year-old children with DSM-IV ADHD (68 with ADHD and comorbid oppositional defiant or conduct disorder [ADHD+ODD/CD]) and 116 non-ADHD comparison children recruited in 1995-96 during the first wave of a longitudinal study. Biological mothers were administered interviews to assess ADHD and DBD in their children and mood, anxiety, and substance use disorders in themselves. In addition, they were queried about symptoms of childhood ADHD and DBD, and antisocial personality disorder in themselves and their children's biological fathers.
RESULTS:
Child ADHD was associated with increased rates of maternal and paternal childhood ADHD relative to comparison children. Child ADHD+ODD/CD was associated with maternal mood disorders, anxiety disorders, and stimulant/cocaine dependence, and paternal childhood DBD. Mothers of children with ADHD+ODD/CD also reported increased drinking problems in their children's fathers.
CONCLUSIONS:
These findings indicate that many young children with ADHD, particularly those with comorbid ODD/CD, require comprehensive services to address both their ADHD and the mental health needs of their parents.

Samtal i självhjälpsgrupp – få kraft och stöd av andra i samma situation.

Essén, Charlotte (2003)

Känslan av total isolering i en krissituation kan ibland vara lika förödande som själva orsaken till krisen. Den som själv är drabbad eller har varit i samma situation kan bättre förstå hur det känns- det är grundtanken bakom fenomenet självhjälpsgrupper.
Journalisten Charlotte Essén har i sin bok samlat en mängd fakta kring självhjälpsgrupper: varför de behövs, hur de har utvecklats, hur de fungerar etc. Hon har även sammanställt en utförlig lista- den första i sitt slag- över alla de grupper som finns i Sverige idag, sorterade under ämnesrubriker, vilket gör boken till en användbar handbok för den som söker hjälp eller vill starta en ny grupp.

Socio-Communicative Variables and Behavior States in Students with Profound and Multiple Disabilities: Descriptive Data from School Settings

Arthur, M. (2003)

Assessment of student behavior states and contextual variables has emerged as a promising area for research and practice in the education of individuals with profound and multiple disabilities. This paper presents findings of an observational study of ten school-aged students in this population, with particular attention being paid to social and communicative variables operating in educational settings. Comparisons are made with other published studies of behavior state assessment and socio-communicative processes observed in special education programs. Implications of these findings are discussed in relation to extant literature and avenues for further investigation in this field. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training

Gall, Sheena Helen, Atkinson, Jacqueline, Elliott, Lawrence, Johansen,Ron (2003)

BACKGROUND:
United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM:
To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS:
The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS:
Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS:
Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.

Telephone Group Intervention for Older Stroke Caregivers

Hartke RJ, King RB. (2003)

Purpose: This study evaluated the effectiveness of telephone groups for older, spousal caregivers of stroke survivors. Method: The 88 caregivers were mostly white females who were 70 years old on average and who had been providing care for an average of 3 years. Participants were randomized to treatment or control conditions, followed for 6 months, and assessed for depression, burden, loneliness, stress, and competence. Treatment participants engaged in an eight-session psychoeducational telephone group. Results: Treatment participants showed decreased stress over time but were not significantly different from control participants in the amount of change in stress. Control participants showed a significant increase in burden during the study; treatment participants showed a significant increase in competence.

The Family Bereavement Program: efficacy evaluation of a theory-based prevention program for parentally bereaved children and adolescents

Sandler, I.N., Ayers, T.S., Wolchik, S.A., Tein, J., Kwok, Q., Haine, R.A., Twohey-Jacobs, J., Suter, J., Lin, K., Padgett-Jones, S., Weyer, J.L., Cole, E., Kriege, G. & Griffin, W. (2003)

This article presents an experimental evaluation of the Family Bereavement Program (FBP), a 2-component group intervention for parentally bereaved children ages 8-16. The program involved separate groups for caregivers, adolescents, and children, which were designed to change potentially modifiable risk and protective factors for bereaved children. The evaluation involved random assignment of 156 families (244 children and adolescents) to the FBP or a self-study condition. Families participated in assessments at pretest, posttest, and 11-month follow-up. Results indicated that the FBP led to improved parenting, coping, and caregiver mental health and to reductions in stressful events at posttest. At follow-up, the FBP led to reduced internalizing and externalizing problems, but only for girls and those who had higher problem scores at baseline.

The psychosocial functioning of children and spouses of adults with ADHD

Minde, K., Eakin, L., Hechtman, L., Ochs, E., Bouffard, R., Greenfield, B., & Looper, K. (2003)

BACKGROUND:
It is unclear what the impact of parental ADHD is on the day-to-day life of the rest of the family and how it contributes to the intergenerational transmission of this disorder.

METHOD:
The psychosocial functioning of 23 spouses and 63 children of 33 families with an ADHD parent and 20 spouses and 40 children of 26 comparison families was examined. Both adults and their spouses were assessed for lifetime and current Axis I and Axis II diagnoses, present general psychiatric symptoms and their marital relationships. Children were screened for ADHD and other problems, using the C-DISC, CBLC, TRF and the Social Adjustment Inventory.

RESULTS:
Children with an ADHD parent had higher rates of psychopathology than those from comparison families. Children with ADHD had more co-morbidities than non-ADHD children. Family and marital functions were impaired in ADHD families regardless of the gender of the affected parent. Children without ADHD from families with one psychiatrically healthy parent did well while the behaviour of children with ADHD was always poor and not associated with parental mental health.

CONCLUSION:
The results underscore the strong genetic contribution to ADHD and the need to carefully assess the non-ADHD parent as they seem to influence the well-being of non-ADHD children in families with an ADHD parent.

The role of social support in well-being and coping with self-reported stressful events in adolescents

Bal, S., Crombez, G., Van Ost, P., & Debourdeayhuij, I. (2003)

Objective: This study investigated the role that social support plays in well-being and in coping after a stressful event in a group of non-clinical adolescents. Furthermore, this study aimed at replicating the finding that adolescents who reported sexual abuse reported more symptoms and less adequate coping strategies than adolescents who reported another type of stressful event or no stressful episode.

Method: Eight hundred and twenty adolescents between 12 and 18 years of age filled out questionnaires assessing social support (Social Support Questionnaire, Sarason, Shearin, Pierce, & Sarason, 1987), trauma-related symptoms (Trauma Symptom Checklist for Children, Briere, 1996), behavior problems (Youth Self-Report, Achenbach, 1991), and coping (How I Cope Under Pressure Scale, Ayers, Sandler, West, & Roosa, 1996).

Results: 42% of the adolescents reported a stressful experience, and 4.4% reported sexual abuse. Sexually abused adolescents reported more stress-related symptoms and used more avoidance and fewer support-seeking coping strategies than the other adolescents. The main-effect hypothesis of social support was sustained, but social support did not moderate the relation between a stressful event and coping. Yet, a trend was found suggesting that high support from the family was associated with less avoidance coping and more support-seeking in adolescents who reported a non-sexually abusive, stressful event.

Conclusions: Our findings show that a highly perceived availability of social support is directly associated with fewer trauma-related symptoms, especially in adolescents who are non-sexually abused. For adolescents who reported a sexual or another type of stressful event, social support did not play a different role in coping.

The Shifting Balance of Long-Term Care in Sweden

Sundström, G. (2003)

Abstract

PURPOSE:
This study describes the Swedish debate on the role of family and state in care of elderly persons. It provides empirical evidence on the shifting balance of family, state, and market in the total panorama of elderly care.
DESIGN AND METHODS:
Secondary analysis of older (1954) and more recent data sources (1994 and 2000) is used to assess living arrangements and care patterns for persons 75 years or older living in the community.
RESULTS:
Total spending on aged adults has stagnated, and institutional care is shrinking in absolute and relative terms, but public Home Help for elders in the community is decreasing even more. Family members increasingly shoulder the bulk of care, but privately purchased care also seems to expand. This study calculates how public and informal care changed between 1994 and 2000: Informal care is estimated to have provided 60% of all care to elders in the community in 1994 and 70% in 2000.

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.

The use of information technology in home healthcare : Requirements and application development (Linköping studies in science and technology. Diss. 1066).

Lind, L (2003)

The population's wish to receive care in the own home instead of at a hospital fits well with the Health Services' development in the direction of increasing home healthcare even when severe illness is involved. However, when care is moved from the hospital to the home the demands for high quality care still remain. Information and telecommunication technologies used in applications which are tailored to support caregivers and patients in home healthcare, can be part of the facilitation of this development towards an increasing home healthcare service. Remote monitoring of the patient in the home can support assuring this quality of care but such monitoring involves considering several requirement areas.This thesis describes problem areas in both basic and advanced home healthcare where information technology can be a part of the solution. Further, the thesis describes requirement areas to be considered when monitoring patients in the home, both in regard to subjective and objective variables. The requirement areas, which are described in the thesis, include security, mobility, and responsibility. Network solutions for home healthcare are discussed and two information technology applications in home healthcare are described. The first application concerns diabetes care and the second application concerns the use of digital pen technology for symptom assessments in advanced palliative home healthcare.

Tillgång till habilitering och rehabilitering för barn och ungdomar med funktionshinder. Uppföljning och utvärdering, 2003-103-2.

Socialstyrelsen (2003)

Socialstyrelsen har haft regeringens uppdrag att kartl‰gga p vilket s‰ttlandstingens barn- och ungdomshabilitering ‰r tillg‰nglig fˆr barn och ung-domar i olika Âldrar med olika funktionshinder. Fˆr att skapa underlag fˆrarbetet har enk‰ter riktats till landstingen och till barn/ungdomar med fa-miljer som under fˆrsta halvÂret 2002 hade habiliteringsinsatser. En kvalita-tiv studie som omfattar tio familjer har ocks gjorts. Markˆr AB, ÷rebro haransvarat fˆr insamlingen och sammanst‰llningen av materialet, som finnspublicerat i tv rapporter.UtifrÂn den genomfˆrda enk‰ten till barn/ungdomar med familjer kan So-cialstyrelsen konstatera att mÂnga barn och ungdomar med funktionshinderfÂr en bra habilitering och rehabilitering. MÂnga ‰r nˆjda bÂde med innehÂll,omfattning, bemˆtande, inflytande och mˆjligheter att pÂverka. Men Social-styrelsen kan ocks konstatera att de brister som tidigare studier har visatfortfarande kvarstÂr. TillgÂngen till habilitering/rehabilitering ‰r oj‰mnt fˆr-delad, bÂde mellan olika delar i landet och mellan olika grupper av funk-tionshinder.Sammantaget ˆver landet tas alla grupper av barn/ungdomar med funk-tionshinder emot av landstingen fˆr habilitering, men en grupp som p ettst‰lle har god tillgÂng till habilitering kan i en annan del av landet saknaviktiga insatser. ƒven inom ett och samma landsting fˆrekommer betydandevariationer.TillgÂng till habilitering och rehabilitering. Grupper som vanligen hartillgÂng till habilitering/rehabilitering ‰r barn och ungdomar med utveck-lingsstˆrning, med rˆrelsehinder och med neurologiska skador och sjukdo-mar. Barn/ungdomar med brister i tillgÂng till habilitering ‰r framfˆr allt demed funktionsneds‰ttningar till fˆljd av ADHD, autismliknande tillstÂndoch autism. Barn med flera funktionshinder, medicinska funktionshinderoch vissa kommunikationshinder, t.ex. synskada och talsvÂrigheter, fÂr inteheller sina behov av habilitering/rehabilitering tillr‰ckligt v‰l tillgodosedda.Brist p underlag. Landstingen genomfˆr inga kartl‰ggningar fˆr attkunna redovisa och fˆlja vilka barn/ungdomar som har behov av habilite-ring/rehabilitering, hur mÂnga de ‰r, vilken Âlder de har eller vilka typer avfunktionshinder det ‰r frÂga om och hur behoven ser ut.Landstingen kan inte redovisa vilka resurser som riktas till habilite-ring/rehabilitering fˆr barn och ungdomar, varken i pengar eller personal.Inflytande och mˆjlighet att pÂverka. Den enskildes mˆjligheter att pÂ-verka sin habilitering/rehabilitering ‰r begr‰nsade. S‰rskilt tycks detta g‰llabarn vars fˆr‰ldrar inte ‰r fˆdda i Sverige, har lÂg utbildning och/eller lÂginkomst.Individuell habiliteringsplan. Individuella planer enligt h‰lso- och sjuk-vÂrdslagen anv‰nds s‰llan om man ser till landstingens alla verksamheter. Ifˆrsta hand ‰r det den verksamhet som ben‰mns barn- och ungdomshabilite-ring som arbetar med individuell habiliterings/rehabiliteringsplan.
8Samverkan. Det finns brister i samverkan, bÂde internt inom landstingenoch externt mellan landstingens olika verksamheter och t.ex. skolan.Rutiner fˆr kvalitetsutveckling saknas. MÂnga kliniker saknar doku-menterade rutiner fˆr att samla in information och synpunkter frÂn bar-nen/ungdomarna och deras familjer.Information. Familjerna anser ofta att den information som de fÂr frÂnlandstingen ‰r bristf‰llig.Bemˆtande. MÂnga fˆr‰ldrar upplever att det stˆd de fÂr ‰r otillr‰ckligt.Minst nˆjda med den habilitering de fÂr ‰r familjer d‰r barnet/ungdomen harflera funktionshinder. I undersˆkningen framtr‰der tydligt fˆr‰ldrarnask‰nsla av att sj‰lva tvingas vara drivande fˆr att f det stˆd som de behˆver.Personal. Fortfarande saknas tillgÂng till insatser frÂn flera yrkesgrupperfˆr att habilitering fˆr barn och ungdomar skall fungera v‰l, framfˆr alltlogopeder, men ocks psykologer, l‰kare, kuratorer och sjukgymnaster.Socialstyrelsen anser att habilitering/rehabilitering bˆr f en starkarest‰llning inom h‰lso- och sjukvÂrden.Socialstyrelsen bedˆmer att den lagstiftning som finns ‰r tillr‰cklig underfˆruts‰ttning att den till‰mpas. Socialstyrelsen bedˆmer att ytterligare utred-ning av omrÂdet i nul‰get inte skulle gagna barn och ungdomar med funk-tionshinder.Socialstyrelsen anseratt landstingen fˆr att kunna planera sin h‰lso- ochsjukvÂrd med utgÂngspunkt i befolkningens behov regelbundet bˆr genom-fˆra kartl‰ggning av vilka grupper av barn/ungdomar med funktionshindersom finns och hur deras behov ser ut.Landstingens olika verksamheter bˆr av ledningen ges tydliga uppdragom vilka grupper av funktionshindrade som de har ansvar fˆr.SjukvÂrdshuvudm‰nnen bˆr i forts‰ttningen redovisa vilka insatser somfinns fˆr olika grupper av funktionshinder i en s‰rskild organisationsplan.SjukvÂrdshuvudm‰nnen bˆr dessutom tydligt redovisa vilka resurser i formav pengar och personal som gÂr till habilitering/rehabilitering fˆr barn ochungdomar med funktionshinder.Enligt h‰lso- och sjukvÂrdslagen skall individuella habiliterings- och re-habiliteringsplaner erbjudas barn/ungdomar med funktionshinder och derasfamiljer. Det utvecklingsarbete som pÂgÂr n‰r det g‰ller individuell planenligt h‰lso- och sjukvÂrdslagen behˆver lyftas fram och fˆrst‰rkas.Kvalitetsarbetet bˆr ges en mera framtr‰dande st‰llning inom verksam-heter med ansvar fˆr habilitering/rehabilitering och hj‰lpmedel och huvud-m‰nnen bˆr stˆdja forskning och statistikinsamling inom omrÂdet.SjukvÂrdshuvudm‰nnen bˆr ocks verka fˆr att viktiga begrepp inom ha-bilitering och rehabilitering fˆrankras inom verksamheterna

Using Multimodal Annotation Tools in the Study of Multimodal Communication Involving Non speaking Persons

Rydeman, B. (2003)

The creation of large, richly annotated, multimodal corpora of human interactions is an expensive and time consuming task. Support from annotation tools that make the annotation process more efficient is required, especially if the annotation effort involves really large amounts of data. Therefore we investigated how different properties of specific annotation tasks can have an impact on the design of a tool focused on that general class of tasks. In this paper we present our view on the considerations that should drive the design of new tools geared to specific tasks. The main dimensions that we consider are: observation vs interpretation, explicit and implicit input layers, segmentation, feedback, constraints, relations and the content of the annotation elements.

What imitation tells us about social cognition: a rapprochement between developmental psychology and cognitive neuroscience

Meltzoff, A. N., & Decety, J. (2003)

Both developmental and neurophysiological research suggest a common coding between perceived and generated actions. This shared representational network is innately wired in humans. We review psychological evidence concerning the imitative behaviour of newborn human infants. We suggest that the mechanisms involved in infant imitation provide the foundation for understanding that others are 'like me' and underlie the development of theory of mind and empathy for others. We also analyse functional neuroimaging studies that explore the neurophysiological substrate of imitation in adults. We marshal evidence that imitation recruits not only shared neural representations between the self and the other but also cortical regions in the parietal cortex that are crucial for distinguishing between the perspective of self and other. Imitation is doubly revealing: it is used by infants to learn about adults, and by scientists to understand the organization and functioning of the brain.

"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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.

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.

"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

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

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

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

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

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

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

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.

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

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.

Aging in Place in a Retirement Community: 90+ Year Olds

Paganini-Hill, A. (2013)

Aging in place, an image of growing old in one's home and maintaining one's daily routine, is desired by most older adults. To identify variables promoting such independent living in the oldest-old, we examined the association between living situation of a population-based cohort of 90+ year olds with health and lifestyle variables. Of 1485 participants, 53% still lived in their home at a retirement community designed to foster wellness. Those living at home tended to be healthier, with smaller proportions having chronic diseases or hospitalizations in the preceding year and a greater proportion having normal functional ability. Dementia was the chronic disease most significantly related to living situation. In addition to not having dementia, not using a wheelchair or bath aid, receiving meals on wheels, and being married were jointly related to living at home. With the help of family and friends and with a medical and social support system, many 90+ year olds can age in place. This is often because they have a caregiving spouse or paid caregiver.

Alcohol use during pregnancy in Canada: How policy moments can create opportunities for promoting women’s health

Poole, N & Greaves, L. (2013)

This article addresses the challenge of igniting action on health promotion for women in Canada with respect to alcohol use during pregnancy. We illustrate that accelerated action on health promotion for women that engages multiple levels of players, women-centred and harm-reduction frameworks and a gendered approach to understanding women's lives can be achieved when the right policy moment occurs. We illustrate this by describing the opportunity afforded by the Olympic Games in 2010, where the BC government used the Games to encourage action on women's health promotion and the prevention of alcohol use in pregnancy. We suggest that the 2011 announcement of new low-risk drinking guidelines that recommend lower intake of alcohol for women than for men offers another, to date unused, opportunity.

Alcohol use in pregnancy: prevalence and predictors in the longitudinal study of Australian Children

Hutchinson, D., Moore, E.A., Breen, C., Burns, L., & Mattick, R.P. (2013)

INTRODUCTION AND AIMS:
This study aimed to estimate the prevalence and describe the patterns of alcohol use during pregnancy among Australian mothers. The study also aimed to examine the characteristics associated with alcohol use in pregnancy.
DESIGN AND METHODS:
Data comprised two representative samples of families (infant cohort = 5107 parents of 0- to 1-year-olds; child cohort = 4983 parents of 4- to 5-year-olds) from the 2005 Longitudinal Study of Australian Children.
RESULTS:
Alcohol use in pregnancy was reported by 37.6% of mothers of infants aged 0-1 years and 27.6% of mothers of children aged 4-5 years. The majority of women reported low level/occasional use of alcohol but, when extrapolated to population level, this equates to 131,250 children in these two age groups exposed to alcohol in utero, with over 1000 children exposed to alcohol most days and an estimated 671 infants exposed to three or more drinks per occasion. Among mothers of infants, alcohol use in pregnancy was associated with increasing maternal age, higher education, greater economic advantage and fewer physical health problems in pregnancy. Among mothers of children, maternal drinking in pregnancy was associated with increasing maternal age and smoking in pregnancy.
DISCUSSION AND CONCLUSIONS:
Alcohol use during pregnancy is common with around one-third of all mothers reporting use. Most women reported only occasional use, and among those who were asked, consumed one standard drink on average per occasion. Significant numbers were exposed to three or more drinks on one occasion or to alcohol most days while in utero. National guidelines recommend abstinence as no 'safe' threshold has been determined. Public health campaigns are needed to educate pregnant women regarding national guidelines.

An assessment of the relationship between informal caring and quality of life in older community-dwelling adults -- more positives than negatives

Ratcliffe J, Lester LH, Couzner L, Crotty M. (2013)

The main objective of the study was to apply the recently developed Index of Capability (ICECAP-O) instrument to measure and value the quality of life of a representative sample of the older South Australian population (aged>=65 years) according to carer status. A Health Omnibus survey including the ICECAP-O instrument, carer status (informal carer vs. non-carer) and several socio-demographic questions was administered in 2009 as a face-to-face interview to 789 individuals aged 65 years or older in their own homes. A total of 671 individuals (85%) characterised themselves as a non-carer and 115 individuals (15%) characterised themselves as an informal carer. In general, carers exhibited relatively high quality of life as measured by the ICECAP-O, with carers having comparable mean ICECAP-O scores to non-carers in the general population [carers: mean (SD) 0.848 (0.123), non-carers: mean (SD) 0.838 (0.147)]. The results of the multivariate regression model for the total sample indicated statistically significant variations in overall ICECAP-O scores according to age (with younger participants tending to have slightly higher scores on average), country of birth (with those participants who were born in Australia having higher scores on average than those who were born elsewhere) and household income (with participants with higher income levels having higher scores on average). The results of the multivariate regression model differentiated by carer status also indicated some important differences. Specifically, average ICECAP-O scores were noticeably lower for carers who are separated or divorced and for carers who lived alone and these differences were statistically significant. The study findings provide support for the existence of process utility in informal care-giving. The provision of informal care may be associated with a positive impact upon quality of life for many caregivers, which may mediate the negative aspects arising from the burden associated with informal care-giving.

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 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.

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

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.

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.

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 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 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 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

Barns och ungas hälsa, vård och omsorg 2013

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.

Between 'Choice' and 'Active Citizenship': Competing Agendas for Home Care in the Netherlands

Grootegoed, E. (2013)

Choice over home care has become an important pillar in the provision of publicly financed long-term care for people of all ages. In many European welfare states, cash-for-care schemes give care recipients greater choice over home care arrangements by allowing them to pay for care provided by acquaintances, friends and even family members. Paying for such informal care, however, is increasingly contested due to growing care needs, rising costs and the perceived need to tighten access to publicly funded care. Citizens in paid care-giving roles are thus pressured to continue their care unpaid or re-divide their care-giving responsibilities with lay 'citizen-carers'. On the basis of a Dutch case study, this article examines how paid family care-givers experience this call for greater self-sufficiency in providing care. An analysis of 25 interviews and 21 letters of complaint revealed that care-givers felt trapped between their desire to derive social status from paid work and their inability to reject or re-divide previously paid care responsibilities. In a society where all citizens are expected to work, care-givers feel that their previously paid care-giving is devalued from a public to a private matter, despite the government's attempts to reframe care as an act of good citizenship.

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.

Keywords: Informal care giving, schizophrenia, subjective burden, objective burden, diary method, recall method

Caregiver responsiveness to the Family Bereavement Program: what predicts responsiveness? What does responsiveness predict?

Schoenfelder, E.N., Sandler, I.N., Millsap, R.E., Wolchik, C.B., Berkel, C., & Ayers, T.S. (2013)

Abstract
The study developed a multidimensional measure to assess participant responsiveness to a preventive intervention and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 caregivers assigned to the intervention condition in the efficacy trial of the FBP. Positive parenting, caregiver depression, and child externalizing problems at baseline were found to predict caregivers' use of program skills outside the group, and more child internalizing problems predicted more positive perceptions of the group environment. Higher levels of skill use during the program predicted increased positive parenting at the 11-month follow-up, whereas positive perceptions of the group environment predicted decreased caregiver depressive symptoms at follow-up. Caregiver skill use mediated the relation between baseline positive parenting and improvements in positive parenting at 11-month follow-up, and skill use and perceived group environment mediated changes in caregiver depression from baseline to 11-month follow-up.

Caregivers´ experiences of caring for an elderly next of kin in Sweden

Wester, A., Larsson, L., & Pennbrant, S. (2013)

Background: Care of elderly changed in the 1990s in Sweden; treatment sessions were shortened in particular. Consequently, patients have a greater need for care when returning home from hospital. This task may seem overwhelming and caregivers can feel lonely, worn out and resigned in their situation.
Aim: Explore how caregivers experience caring for an elderly next of kin in ordinary living.
Method: Qualitative content analysis of semi-structured interviews with eleven Swedish caregivers.
Findings: Caregivers experienced their situation as something to be endured. In particular, they felt a need for belonging, a need for controlling everyday life, and a need for support.
Conclusion: Home care nurses, health centres and home support workers should be aware of and respect caregivers' needs in terms of support.

Carers in Sweden: The public support they receive, and the support they desire

Jegermalm, M. and G. Sundström (2013)

•This article describes and analyses public support received by unpaid carers in Sweden

•Three types of carers were identified

•Very few carers helping someone living in a different household – the large majority of carers – received or desired support aimed directly at them

•Carers mostly wanted public services for the cared-for person

•Despite legislation in 2009 mandating municipalities to offer support to carers, very few of them know about this law

•There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support services for themselves

•Social policy needs to clarify the aims of the support provided and to take the needs of both carers and cared-for persons into account.

This article describes and analyses public support for Swedish unpaid carers, now mandated by law, and also the support that they desire, using surveys conducted in 2008, 2009, and later. Few carers helping someone in a different household – the large majority of the carers – received any support aimed directly at them, such as access to support groups, training, relief service, or financial support. Yet, most carers did not desire any support for themselves. They mostly wanted public services for the cared-for person, all of which may also indirectly support carers. Intra-household carers – about a tenth of all carers – have vastly larger care commitments than other carers. Some of them desire support for themselves, usually relief services of financial support. Three out of 10 of these carers used any public support, despite the new (2009) legislation that only a minority of carers know about. There is a wide gap between policies and their implementation, but also some reluctance among carers to use public support for themselves. The relationship between carers and the state is unclear in Sweden and this reflects on the aims and the forms of support. Stereotypes about 'typical' carers may have impeded adequate forms of support.

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 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.

Childhood exposure to violence and lifelong health: Clinical intervention science and stress-biology research join forces

Moffitt, T. E., & Klaus-Grawe Think, Tank. (2013)

Many young people who are mistreated by an adult, victimized by bullies, criminally assaulted, or who witness domestic violence react to this violence exposure by developing behavioral, emotional, or learning problems. What is less well known is that adverse experiences like violence exposure can lead to hidden physical alterations inside a child's body, alterations that may have adverse effects on life-long health. We discuss why this is important for the field of developmental psychopathology and for society, and we recommend that stress-biology research and intervention science join forces to tackle the problem. We examine the evidence base in relation to stress-sensitive measures for the body (inflammatory reactions, telomere erosion, epigenetic methylation, and gene expression) and brain (mental disorders, neuroimaging, and neuropsychological testing). We also review promising interventions for families, couples, and children that have been designed to reduce the effects of childhood violence exposure. We invite intervention scientists and stress-biology researchers to collaborate in adding stress-biology measures to randomized clinical trials of interventions intended to reduce effects of violence exposure and other traumas on young people.

Childhood socio-economic status, school failure and drug abuse: a Swedish national cohort study

Gauffin K, Vinnerljung B, Fridell M, Hesse M, Hjern A. (2013)

AIM: To investigate whether socio-economic status (SES) in childhood and school failure at 15 years of age predict illicit drug abuse in youth and young adulthood. DESIGN, SETTING AND PARTICIPANTS: Register study in a Swedish national cohort born 1973-88 (n = 1,405,763), followed from age 16 to 20-35 years. Cox regression analyses were used to calculate hazard ratios (HR) for any indication of drug abuse. MEASUREMENTS: Our outcomes were hospital admissions, death and criminality associated with illicit drug abuse. Data on socio-demographics, school grades and parental psychosocial problems were collected from censuses (1985 and 1990) and national registers. School failure was defined as having mean school grades from the final year in primary school lower than -1 standard deviation and/or no grades in core subjects. FINDINGS: School failure was a strong predictor of illicit drug abuse with an HR of 5.87 (95% CI: 5.76-5.99) after adjustment for age and sex. Childhood SES was associated with illicit drug abuse later in life in a stepwise manner. The lowest stratum had a HR of 2.28 (95% CI: 2.20-2.37) compared with the highest stratum as the reference, when adjusted for other socio-demographic variables. In the fully adjusted model, the effect of SES was greatly attenuated to an HR of 1.23 (95% CI: 1.19-1.28) in the lowest SES category, while the effect of school failure remained high with an HR of 4.22 (95% CI: 4.13-4.31). CONCLUSIONS: School failure and childhood socio-economic status predict illicit drug abuse independently in youth and young adults in Sweden.

Childhood socioeconomic status, school failure, and drug abuse - a Swedish national cohort study

Gauffin, K., Vinnerljung, B., Fridell, M., Hesse, M., Hjern, A. (2013)

We examined prevalence of parental deaths among former out-of-home care youths at age 18 and 25, and odds of parental loss compared with peers from similar socio-economic childhood backgrounds. The study utilized Swedish national register data for 12 entire birth cohorts (1972–1983), 35 550 former out-of-home care youths and 1 138 726 cohort peers without out-of-home care experiences. Logistic regression models were used to compute odds ratios for parental loss through death.

It was especially common among former residents of long-term out-of-home care to be motherless (11%), fatherless (11–13%) or orphaned (3–4%) at age 18, compared with non-foster care peers (1%, 3% and 0.03%). Twenty-six per cent had lost at least one parent (4% among non-foster care peers). At age 25, the figures had increased considerably; 36% had lost at least one parent, compared with 7% in the majority population. Adjusted odds ratios for parental loss among long-term care youth were strikingly high, particularly for having a deceased mother. In short-term and intermediate care, most youths with deceased parents had suffered parental loss before entering foster care. For youth from long-term care, parental death after start of placement was most common.

Children’s voices – Differentiating a child perspective from a child’s perspective. Developmental Neurorehabilitation

Nilsson S, Björkman B, Almqvist A-L, Almqvist L, Björk-Willén P, Donohue D, et al. (2013)

Objective: The aim of this paper was to discuss differences between having a child perspective and taking the child's perspective based on the problem being investigated.
Methods: Conceptual paper based on narrative review.
Results: The child's perspective in research concerning children that need additional support are important. The difference between having a child perspective and taking the child's perspective in conjunction with the need to know children's opinions has been discussed in the literature. From an ideological perspective the difference between the two perspectives seems self-evident, but the perspectives might be better seen as different ends on a continuum solely from an adult's view of children to solely the perspective of children themselves. Depending on the research question, the design of the study may benefit from taking either perspective. In this article, we discuss the difference between the perspectives based on the problem being investigated, children's capacity to express opinions, environmental adaptations and the degree of interpretation needed to understand children's opinions.
Conclusion: The examples provided indicate that children's opinions can be regarded in most research, although to different degrees.

Code sets for everyday life situations of children aged 0-6: Sleeping, mealtimes, and play.A study based on the International Classification of Functioning, Disability and Health for Children and Youth

Adolfsson M, Björck-Åkesson E, Lim C-I. (2013)

Introduction: The complexity of the Child and Youth version of the International Classification of Functioning, Disability and Health, the ICF-CY, is a challenge for occupational therapists and other professionals in clinical work. Code sets including only essential categories help to make it more user-friendly. Thus far, code sets have been developed to reflect functioning for children in different developmental periods. However, there are no code sets that support screening of participation in everyday life situations and can be used across diagnoses. This exploratory study is the first attempt to develop code sets for preschoolers' (age 0–6 years) everyday life situations.
Method: Using sequential Delphi processes with expert panels consisting of 35 professionals in five interdisciplinary early intervention teams and six parents of children, the study identified content in three code sets: Sleeping, Mealtimes and Play.
Results: A limited number of relevant categories were identified for three code sets: Sleeping (12), Mealtimes (21) and Play (30). Findings suggested a professional focus on Environmental factors compared with a parental focus on Body functions.
Conclusion: It is important to consider the opinions of all involved when developing code sets to provide a common framework for screening of children's everyday functioning.

Combined individual cognitive behavior therapy and parent training for childhood depression: 2- to 3-year follow-up

Eckshtain, D. and S. T. Gaynor (2013)

Fourteen children with significant depressive symptoms from an open clinical trial of Primary and Secondary Control Enhancement Training augmented with Caregiver–Child Relationship Enhancement Training, participated in a 2- to 3-year follow-up assessment. The results suggested that the significant decreases in depressive symptoms observed at posttreatment were maintained at 2- to 3-year follow-up. Mothers' reports of significant improvement of child psychosocial functioning were also maintained, providing social validation of the effects. Pretreatment child-rated mother-child relations predicted depressive symptoms at 2- to 3-year follow-up. These long-term data support the use of the combined intervention and suggest the need for further research on caregiver involvement in treatment. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Combining paid work and family care

Kroger T., Yeandle, S. (Eds) (2013)

As populations around the world age, increasing efforts are required from families and governments to secure care and support for older and disabled people. Furthermore, both women and men are expected to work later into life. Taken together, these two facts have made the relationship between work and care a burning issue for social and employment policy as well as for those working toward economic sustainability. Emphasizing the lessons that can be learned from individual experiences, this book widens current debates on these topics, bringing the experiences of individuals who support older, disabled, or chronically ill partners, relatives, or children to the discussion table.

Commentary on in-home monitoring support for dementia caregivers: Feasibility study

Aud, M. A. (2013)

Comments on an article by Kristine Williams, Anne Arthur, Michelle Niedens, Lois Moushey, Lewis Hutfles (see record 2013-14270-001). Williams et al. assessed the feasibility of a telehealth intervention to support family caregivers of persons with dementia in home settings. The authors identify two major concerns of family caregivers: how to best communicate with the person with dementia and how to cope with disruptive behaviors. They list three types of disruptive behaviors: vocalizations, wandering, and physical aggression. Both communication problems and coping with disruptive behaviors are potential sources of increased caregiver stress and increased caregiver burden. William et al. describe an individualized approach using telehealth technologies to connect the family caregiver to an interdisciplinary team with expertise in dementia care. The use of technology as described by the authors facilitates provision of timely information to the family caregiver. The family caregiver does not have to wait until a visit to the healthcare provider to discuss issues with communication and behavior management; weekly feedback is provided.

Commentary on in-home monitoring support for dementia caregivers: Feasibility study

Aud, M. A. (2013)

Comments on an article by Kristine Williams, Anne Arthur, Michelle Niedens, Lois Moushey, Lewis Hutfles (see record 2013-14270-001). Williams et al. assessed the feasibility of a telehealth intervention to support family caregivers of persons with dementia in home settings. The authors identify two major concerns of family caregivers: how to best communicate with the person with dementia and how to cope with disruptive behaviors. They list three types of disruptive behaviors: vocalizations, wandering, and physical aggression. Both communication problems and coping with disruptive behaviors are potential sources of increased caregiver stress and increased caregiver burden. William et al. describe an individualized approach using telehealth technologies to connect the family caregiver to an interdisciplinary team with expertise in dementia care. The use of technology as described by the authors facilitates provision of timely information to the family caregiver. The family caregiver does not have to wait until a visit to the healthcare provider to discuss issues with communication and behavior management; weekly feedback is provided.

Diagnostic and Statistical Manual of Mental Disorders, 5th Edition

American Psychiatric Association (2013)

This new edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5®), used by clinicians and researchers to diagnose and classify mental disorders, is the product of more than 10 years of effort by hundreds of international experts in all aspects of mental health. Their dedication and hard work have yielded an authoritative volume that defines and classifies mental disorders in order to improve diagnoses, treatment, and research.

The criteria are concise and explicit, intended to facilitate an objective assessment of symptom presentations in a variety of clinical settings—inpatient, outpatient, partial hospital, consultation-liaison, clinical, private practice, and primary care. New features and enhancements make DSM-5® easier to use across all settings:

The chapter organization reflects a lifespan approach, with disorders typically diagnosed in childhood (such as neurodevelopmental disorders) at the beginning of the manual, and those more typical of older adults (such as neurocognitive disorders) placed at the end. Also included are age-related factors specific to diagnosis.
The latest findings in neuroimaging and genetics have been integrated into each disorder along with gender and cultural considerations.
The revised organizational structure recognizes symptoms that span multiple diagnostic categories, providing new clinical insight in diagnosis.
Specific criteria have been streamlined, consolidated, or clarified to be consistent with clinical practice (including the consolidation of autism disorder, Asperger's syndrome, and pervasive developmental disorder into autism spectrum disorder, the streamlined classification of bipolar and depressive disorders, the restructuring of substance use disorders for consistency and clarity, and the enhanced specificity for major and mild neurocognitive disorders).
Dimensional assessments for research and validation of clinical results have been provided.
Both ICD-9-CM and ICD-10-CM codes are included for each disorder, and the organizational structure is consistent with the new ICD-11 in development.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, is the most comprehensive, current, and critical resource for clinical practice available to today's mental health clinicians and researchers of all orientations. The information contained in the manual is also valuable to other physicians and health professionals, including psychologists, counselors, nurses, and occupational and rehabilitation therapists, as well as social workers and forensic and legal specialists.

Differences in social support of caregivers living with partners suffering from COPD or dementia

Nordtug B, Krokstad S, Sletvold O, Holen A. (2013)

BACKGROUND: Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential. OBJECTIVES: This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia. METHODS: A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support. RESULTS: For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners' aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner's level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men. CONCLUSIONS: Differences in caregivers' needs for social support were related to their partner's disease. IMPLICATIONS FOR PRACTICE: Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care.

Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: Design of a randomized controlled trial

Blom MM, Bosmans JE, Cuijpers P, Zarit SH, Pot AM. (2013)

Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design: A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion: This study will provide evidence about the effectiveness and cost-effectiveness of an internet intervention for caregivers. If both can be shown, this might set the stage for the development of a range of internet interventions in the field of caregiving for people with dementia. This is even more important because future generations of caregivers will be more familiar with the use of internet.

Effectiveness of the Incredible Years parent training to modify disruptive and prosocial child behavior: A meta-analytic review

Menting, A. T. A., de Castro, B. O., & Matthys, W. (2013)

The present meta-analytic review examined effectiveness of the Incredible Years parent training (IYPT) regarding disruptive and prosocial child behavior, and aimed to explain variability in intervention outcomes. Fifty studies, in which an intervention group receiving the IYPT was compared to a comparison group immediately after intervention, were included in the analyses. Results showed that the IYPT is an effective intervention. Positive effects for distinct outcomes and distinct informants were found, including a mean effect size of d=.27 concerning disruptive child behavior across informants. For parental report, treatment studies were associated with larger effects (d=.50) than indicated (d=.20) and selective (d=.13) prevention studies. Furthermore, initial severity of child behavior revealed to be the strongest predictor of intervention effects, with larger effects for studies including more severe cases. Findings indicate that the IYPT is successful in improving child behavior in a diverse range of families, and that the parent program may be considered well-established.

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)

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.

Stärkt stöd till barn som anhöriga Slutrapport från regeringsuppdrag 2017–2020

Socialstyrelsen (2020)

Sammanfattning
En hög andel barn har någon gång under sin uppväxt i sin familj missbruk/beroende, psykisk ohälsa eller funktionsnedsättning, våld, allvarlig sjukdom eller skada eller någon som avlider. Ofta är svårigheterna överlappande. Det är ett grundläggande folkhälsoarbete att genom adekvat stöd förebygga de väl dokumenterade riskerna för negativa konsekvenser av en sådan uppväxt, i barnens vardag här och nu och för deras framtid. Ett omfattande utvecklingsarbete har utifrån regeringsuppdragen bedrivits under hela perioden 2011–2020, i nära samarbete med andra nationella och regionala aktörer. Steg har tagits närmare målet att barn inte ska skadas av föräldrars missbruk och beroende och att psykisk ohälsa av familjerelaterade orsaker minskar hos barn och unga. Detta har skett bland annat genom att stödja både hälso- och sjukvård och socialtjänst i att genom ökad kunskap och skapandet av hållbara strukturer tillämpa ett barn-, föräldraskaps- och familjeperspektiv i arbetet med dessa familjer. Stödet har bestått i framtagande och publicering av kunskapssammanfattningar och olika former av webbstöd, spridande av verksamma arbetssätt, stöd till utvecklingsarbeten samt anordnande av konferenser och lärande nätverk. Detta påverkans- och utvecklingsarbete är viktiga insatser för att minska de påverkbara hälsoklyftorna i samhället. Arbetet är också en utmaning som kräver långsiktighet och kontinuerligt stöd för implementering. Fortsatta kontinuerliga insatser behövs för att alla som i sitt arbete möter föräldrar med egna svårigheter uppmärksammar barnens situation och ger dem information, råd och stöd efter behov. Medvetenheten om professionens ansvar att förhålla sig till patienter, brukare och klienter som föräldrar, och till deras barn som anhöriga och rättighetsbärare, behöver öka inom såväl hälso- och sjukvården som socialtjänsten. Barnkonventionen som lag stärker arbetet, men kräver fortsatta insatser för efterlevnad i praktiken. I denna redovisning lyfts därför behovet av att ett fortsatt nationellt stöd inom området behövs. Det stödet omfattar fortsatt arbete med uppföljning, utveckling av ett samordnat familjeorienterat arbetssätt inom socialtjänsten och hälso- och sjukvården, stödstrukturer för barn i akuta situationer, samlad kompetens och ansvar för barn som föds med skador till följd av exponering av alkohol under fosterlivet samt nationellt samordning inom flera områden, exempelvis i arbetet med våld mot barn. Det är angeläget att den kommande ANDT-strategin från 2021 och framåt fortsatt särskilt lyfter behovet av satsningar på barn och stöd i föräldraskap för att se till barns behov av en trygg uppväxt här och nu samt förebygga missbruk och psykisk ohälsa i nästa generation.

The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children's perspectives

Eklund, Rakel; Alvariza, Anette; Kreicbergs, Ulrika; Jalmsell, Li; Lövgren, Malin (2020)

Abstract:
Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.

The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children's perspectives

Eklund, Rakel; Alvariza, Anette; Kreicbergs, Ulrika; Jalmsell, Li; Lövgren, Malin. (2020)

Abstract:
Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.

The Usage of Digital Resources by Swedish Suicide Bereaved in Their Grief Work: A Survey Study

Westerlund, Michael Uv (2020)

Abstract:
This study examined Swedish suicide bereaved individuals' use of different resources in their grief work and how they value these resources. The material consisted of a web-based survey, which was analyzed with quantitative methods. The results showed that the psychosocial ill-health was severe among the suicide bereaved participants and that a majority used digital resources in their grief work. The propensity to engage in online support groups or memorial websites was not predicted by the severity of psychosocial consequences following the suicide. However, multiple regressions showed that higher online support group activity predicted more satisfaction with current psychosocial health, while memorial websites seemed to have the opposite effect. This study not only indicates that some digital resources, for example, online support groups, may be an effective way of coping with grief related to suicide loss, but also suggests that memorial websites may increase rumination and in this way cause emotional distress

Upplevelser av att vara anhörig till en närstående med långvarig sjukdom, långvarigt hjälpbehov, akut sjukdom eller kritiskt tillstånd

Olivia Hellberg, Rebecca Kammerland (2020)

En integrativ forskningsöversikt om dessa anhörigas psykosociala behov samt hur hälso- och sjukvårdskuratorer kan arbeta för att stödja anhöriga som de möter.

Examensarbete Kandidatnivå

Sammanfattning
Syftet är att via en integrativ forskningsöversikt sammanställa forskning om anhöriga till närstående med långvarig sjukdom, långvarigt hjälpbehov, akut sjukdom eller kritiskt tillstånd, deras psykosociala behov och behov av stöd. Vidare syftar studien till att undersöka på vilket sätt hälso- och sjukhuskuratorer kan möta dessa anhörigas behov. Forskningsöversikten består av 20 artiklar som är av kvantitativ, kvalitativ och mixad metod. Artiklarna har analyserats med tematisk analys för att därefter analysera framkommande teman utifrån copingteori och professionsteori. Resultaten visar att anhörigas personliga uppoffringar kan få konsekvenser på hälsa, ekonomi och relationer. Som en psykosocial konsekvens av att hjälpa en närstående upplever många anhöriga stress, ångest och depression. Anhöriga behöver stöd som är anpassat efter deras individuella behov. Olika former av stöd efterfrågas: emotionellt-, instrumentellt- och informativt stöd. Det är viktigt att kuratorer i hälso- och sjukvården uppmärksammar anhöriga, har kunskap och kan möta anhörigas individuella behov. Slutsatserna är att det finns många generella aspekter av att vara anhörig och det mest framträdande resultatet är anhörigas behov av information. Individuellt stöd, stöd i rätt tid och adekvat information är viktigt för att främja anhörigas hälsa och välbefinnande.

Välkommen till helvetet

Nanna Helsén, Stina Helsén (2020)

Det hade gått så snabbt, så oerhört snabbt. Innan jag ens hade hunnit reflektera över det hade jag tappat de där första kilona. Och all kontroll. Och plötsligt rasade allt.?

Förloppet är hastigt när 15-åriga Nanna insjuknar i anorexi, på bara några veckor rasar hon i vikt och läggs in för akut vård. Hennes tillstånd är livshotande och livet vänds uppochner för hennes familj, föräldrarna ständigt vid hennes sida. Nanna plågas av grav ångest och är helt i sjukdomens våld. Hennes enda fokus är att låta bli att äta, sluta existera.

Hemma är 13-åriga lillasystern Stina ledsen och arg. Det som tidigare var en nära syskonrelation upphör tvärt. Hon får plötsligt mer frihet än hon önskar och kämpar för att ha en vardag när allt handlar om sjukdom. Stina har heller ingen lust att spela den lättsamma dottern precis när det råkar passa föräldrarna.

Nanna och Stina, idag vuxna, berättar öppet och rättframt om ett år med anorexin och ångesten ur sina olika perspektiv. Sjukdomen påverkar i hög grad anhöriga. Välkommen till helvetet är en drabbande skildring av just anorexi, men mycket är aktuellt även för andra typer av psykisk sjukdom.

Systrarna Nanna Helsén, född 1989, och Stina Helsén, född 1991, är uppvuxna i Stockholm. Välkommen till helvetet är deras första bok. Till vardags arbetar Nanna med affärsutveckling och Stina är lärare.

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.

"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.

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.

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.

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.

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.

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.

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.

Couples' provision of informal care for parents and parents-in-law: far from sharing equally?

Henz, U (2009)

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-inlaw. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of nonmarital cohabitation in mid-life.

De kan, de vill och de orkar, men …: studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Gustafsson Wallengren, Catarina (2009)

Akademisk avhandling nr 17

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för närstående i deras föränderliga livssituation under de sex första månaderna efter en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter. Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående om vad det innebar att vara närstående till en person drabbad av stroke. Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs metod för kvalitativ innehållsanalys användes för att analysera data. I delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs metod för kvalitativ innehållsanalys. Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att vara närstående till en person drabbad av stroke innebar en kamp för frihet. Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser. De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade de ohälsan och dess konsekvenser i sina liv (II). Den information som närstående ville ha handlade om den strokedrabbade, de professionella och om sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat till personlig involvering, situationella faktorer, olika kunskapsbehov och sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de olika strokeenheterna (IV). Konklusion: Att bli närstående till en person som drabbats av stroke innebär att hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen beredd att ordna livet utifrån de nya förutsättningarna och därför behöver sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå8 ende i de nya och ovana livssituationerna. Att vara närstående under de sex första månaderna efter den drabbades insjuknande innebär att kämpa för frihet, dock utan att överge den drabbade (II). I denna process är det viktigt att den närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv och omsorg om den drabbade och i relation till andra anhöriga. Närstående är kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter varierar stort mellan olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar enbart om den drabbade och berör inte alls de närståendes behov eller situation. Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske hög tid att se över lagen för att undvika att närstående blir "den andra patienten i familjen".

De kan, de vill och de orkar, men… Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter

Wallengren Gustafsson, C. (2009)

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för
närstående i deras föränderliga livssituation under de sex första månaderna efter
en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet
att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid
svenska strokeenheter.
Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående
till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående
om vad det innebar att vara närstående till en person drabbad av stroke.
Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data
från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska
hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie
III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå
under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs
metod för kvalitativ innehållsanalys användes för att analysera data. I
delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska
strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs
metod för kvalitativ innehållsanalys.
Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva
kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet
som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att
vara närstående till en person drabbad av stroke innebar en kamp för frihet.
Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser.
De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade
de ohälsan och dess konsekvenser i sina liv (II). Den information som
närstående ville ha handlade om den strokedrabbade, de professionella och om
sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat
till personlig involvering, situationella faktorer, olika kunskapsbehov och
sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll
adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå
när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de
olika strokeenheterna (IV).
Konklusion: Att bli närstående till en person som drabbats av stroke innebär att
hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen
beredd att ordna livet utifrån de nya förutsättningarna och därför behöver
sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå-
8
ende i de nya och ovana livssituationerna. Att vara närstående under de sex första
månaderna efter den drabbades insjuknande innebär att kämpa för frihet,
dock utan att överge den drabbade (II). I denna process är det viktigt att den
närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv
och omsorg om den drabbade och i relation till andra anhöriga. Närstående är
kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och
framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder
och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i
att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial
som erbjuds närstående vid svenska strokeenheter varierar stort mellan
olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum
på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar
enbart om den drabbade och berör inte alls de närståendes behov eller situation.
Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske
hög tid att se över lagen för att undvika att närstående blir "den andra patienten
i familjen".
Sökord: Närstående, stroke, strokeenheter, skriftliga informationsmaterial,
lärande.

Depression care need among low-income older adults: views from aging service providers and family caregiver

Choi NG, Kimbell K. (2009)

This study reports findings from focus group discussions with aging service providers and family caregivers about low-income ambulatory or homebound older adults' depressive symptoms and barriers to seeking treatment. It also reports the participants' suggestions about interventions for depression that can be integrated into existing aging service settings or implemented in older adults' homes, as well as the type of training the aging service providers need if they are to provide services for depression. Participants identified social isolation, loneliness, and loss and grief as major correlates of depression in older adults. Barriers to seeking treatment included older adults' denial of or lack of understanding about depression, a sense of stigma, financial worries, and lack of mobility. Suggested depression treatments included brief cognitive behavioral interventions, friendly visitors, and physical exercise. Bachelor's-level service providers expressed their need and desire for training in mental health assessment and brief psychotherapy.

Depression in Parents, Parenting and Children

National Research Council and Institute of Medicin. (2009)

Research Challenges in Confronting Depression in Parents

The challenges for researchers, clinicians, and policy makers in attempting to address the problems associated with the care of depression in parents include the integration of knowledge, the application of a developmental framework, conceptualizing the problems in a two-generation nature, and acknowledging the presence of the constellation of risk factors, context, and correlates associated with depression.
Issues Considered in Searching the Literature

To fully understand the linkages among depression, parenting, and the child health outcomes, researchers should consider issues surrounding (but not limited to) the definition and measurement of depression and parenting, the etiology of depression, timing and use of appropriate screening interventions, the process of risk and resilience in children of depressed parents, correlates of depression, and developmental processes and time points.
Challenges in Evaluating the Literature

Researchers face multiple methodological challenges studying depression in parents and its effects on parenting practices and child health outcomes that need to be addressed in order to provide recommendations for the development of future research, interventions, and policy—including conceptual frameworks, sampling designs, data analysis, and integration of research findings across literatures.
In this chapter, the committee describes their approach to the literature on the effects of parental depression on parenting practices and child outcomes and its evaluation. The chapter is organized in three sections, relating to the challenges that researchers face in confronting the problem of parental depression, the wide range of issues that we considered relevant, and standards of evidence and methodological issues that are important to keep in mind in reading this report. Some topics are addressed in more than one section, but they are focused on different aspects of the topic. For example, in the section on research challenges, we show that a conceptual framework relating to the effects of parental depression on families should be guided by a developmental psychopathology perspective. Later, in the section on research standards, we mention what the literature has shown in this regard and that research relating to any psychopathology should address questions "across generations and across time" (Hinshaw, 2008).

The type of evidence and criteria used to judge the importance of that evidence vary from area to area. This chapter does not attempt to explicitly summarize the specific criteria used for the evaluation of the evidence in each area, but instead offers a guideline of the general areas of interest and inquiry that the committee used when the committee searched and evaluated the literature. For example, studies of screening for parental depression are different from studies of treatment and intervention, and these are different from studies of prevention programs. These are also different from inquiries relating to changes in policy at the macro level or the available studies on the effects of parental depression. Thus, in this overview on standards of evidence and methodology, we present general guidelines that the reader should apply when appropriate in the subsequent chapters. Recommendations based on the evaluation of the evidence in each area are presented.

Designing online support for families living with depression

Stjernswärd, S. (2009)

Families living with mental illness experience an added burden and may experience such psychological distress that they require therapeutic intervention. The Internet is used as a daily tool by a growing share of the population worldwide, including for health related matters. Its potential as a health care tool, including advantages and drawbacks, should be explored. The overall aim of the present thesis was to explore the relatives' experiences of living close to a person with depression and the Internet's potential to address their needs. Explorative qualitative research has been used to map the e-health field in relation to depression, to explore what the Internet offers the families living with depression, as well as the relatives' experiences of living with a person with depression. An iterative design process was used in the development of a digitally based tool aimed at supporting the relatives in their daily life with depression. Users' experiences of the tool were explored using qualitative explorative research. A vast array of different organizations and initiatives are represented within the e-health field. However, initiatives that are targeted and tailor-made for families living with depression are scarce. Research in the e-health field with focus on depression illuminates health seekers' and online community users' profiles, effects of online cognitive behavioral therapy (CBT), and a number of strengths (i.e. accessibility) and weaknesses (i.e. reliability) related to the Internet as a health care tool. Living close to a person with depression can strongly affect the private, social and professional areas of the relatives' daily life. A growing feeling of not living one's own life may arise, due to the difficulties of balancing relationships, a process of adaptation and re-evaluation of life circumstances, and a struggle to act as advocate and voice for the person with depression within the health care system and society. Relatives often come in contact with health professionals on 12 behalf of their ill kin and need information and support; needs that are rarely addressed by the health care system. A digitally based tool aimed at supporting the relatives in their daily life with depression was developed using an iterative design process. The tool's development was carried out in close cooperation with users with the help of focus groups and prototypes. Motivations and obstacles to using online self-help tools were illuminated. Privacy stood out as an important factor when developing online tools. The study resulted in a website, www.sommarregn.se, entailing an online diary (private and encrypted), including scales, and a forum (members only access), including an e-mail function. Users' experiences of the website over a 10 weeks test period were illuminated. The diary and forum appeared to fill a number of valuable functions, although a further development of the tool may enhance its usability, which was good. The tool promoted communication with the self and others. The Internet as a technology offered a number of advantages, such as convenience of use and perceived anonymity, and disadvantages, such as qualitative issues. The relatives' needs ought to be addressed in order to support them in a daily life with depression. Empowered relatives are in a better position to help their ill kin and support may prevent ill health in the relatives themselves, and subsequently additional costs to society. Health care professionals meet patients that are also online health seekers. Professionals must be aware of the advantages and drawbacks of e-health when meeting patients. In an economically pressured society, alternative support options have to be explored in order to address the needs of target groups at risk.

Developmental effects of exposure to Intimate Partner Violence in early childhood: A review of the literature

Carpenter, G. L., & Stacks, A. M. (2009)

Intimate Partner Violence (IPV) is a prevalent social problem in the United States and women of childbearing age are the most likely victims. The young children born to these women are impacted, however, women are not routinely asked about IPV even when there is evidence that their child has been abused. To highlight the importance of routinely screening for IPV in child welfare and other social service agencies this article reviews typical social-emotional development and physiological/neurological development in early childhood and the impact that IPV and trauma have on these domains of development. Early intervention with young children and caregivers living with IPV provides a significant buffer to the negative effects that witnessing IPV have on children's development and their relationships with caregivers.

Difficult to measure constructs: Conceptual and methodological issues concerning participation and environmental factors

Whiteneck G, Dijkers MP. (2009)

Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.

For rehabilitation and disability research, participation and environment are 2 crucial constructs that have been placed center stage by the International Classification of Functioning, Disability and Health (ICF). However, neither construct is adequately conceptualized by the ICF, and both are difficult to measure. This article addresses conceptual and methodologic issues related to these ICF constructs, and recommends an improved distinction between activities and participation, as well as elaboration of environment. A division of the combined ICF categories for activity and participation into 2 separate taxonomies is proposed to guide future research. The issue of measuring participation from objective and subjective perspectives is examined, and maintaining these distinct conceptual domains in the measurement of participation is recommended. The methodological issues contributing to the difficulty of measuring participation are discussed, including potential dimensionality, alternative metrics, and the appropriateness of various measurement models. For environment, the need for theory to focus research on those aspects of the environment that interact with individuals' impairments and functional limitations in affecting activities and participation is discussed, along with potential measurement models for those aspects. The limitations resulting from reliance on research participants as reporters on their own environment are set forth. Addressing these conceptual and methodological issues is required before the measurement of participation and environmental factors can advance and these important constructs can be used more effectively in rehabilitation and disability observational research and trials.

Discharge Planning of Stroke Patients: the Relatives´ Perceptions of Participation.

Almborg, A.-H., Ulander, K., Thulin, A., & Berg, S. (2009)

Aims.  To describe relatives' perceived participation in discharge planning for patients with stroke and identify correlates to perceived participation.

Background.  Stroke affects both patients and their relatives and previous research shows that relatives were often dissatisfied with their perceived involvement in discharge planning and the information they get.

Design.  Prospective cross-sectional study.

Methods.  The study comprised 152 consecutively enrolled relatives (mean age = 60·8 years) of acute stroke patients admitted to a stroke unit in southern Sweden during 2003–2005. Data were collected through interviews 2–3 weeks after discharge using 'Relative's Questionnaire about Participation in Discharge planning'. This instrument measures perceived participation in three subscales: R–Information–Illness, R–Information–Care/support, and R–Goals and Needs. The Overall Rating of Relative's Perceived Participation in Discharge Planning was measured by a visual analogue scale (VAS) (1–10 score).

Results.  Among the relatives, 56–68% reported positively according to R–Information–Illness, but 46–53% perceived that they did not receive any information about care/medication/rehabilitation/support. About 80% perceived no participation at all in goals and needs. The mean value of the VAS was 3·89 (SD 3·40) score. Regression analyses revealed that longer stay at hospital, patients with higher education, and relatives of female patients and female relatives were associated with relatives' perceptions of higher participation in discharge planning.

Conclusions.  Relatives perceived that they needed more information and knowledge about stroke and care/medication/rehabilitation/support. They also needed to be more involved in goal-setting and in identifying patient needs. Professionals should take into consideration these associated variables to improve relatives' perceived participation.

Relevance to clinical practice.  Clinicians should give more attention to the altered situation of stroke patients' relatives when planning for continuing care and when setting postdischarge goals for the patients. The professionals need to develop strategies to involve relatives in sharing information, goal-setting and needs assessment in discharge planning.

Diskriminerad, trakasserad och kränkt

Skolverket (2009)

I denna rapport redovisas den första delen av regeringsuppdraget om diskriminering. Den omfattar en undersökning om barns, elevers och studerandes uppfattningar om och upplevelser av situationer där diskriminering och trakasserier förekommer i förskolan, grundskolan, obligatoriska särskolan, gymnasiesärskolan, särvux och gymnasieskolan samt i den kommunala vuxenutbildningen/SFI. De övriga delarna i detta regeringsuppdrag finns redovisade dels i Skolverkets rapport "Tillgänglighet till skolors lokaler och valfrihet för elever med funktionsnedsättning", dels i Skolverkets rapport "Barn- och elevskyddslagen i praktiken. Förskolors, skolors och vuxenutbildningens tillämpning av lagen"

Does parent management training for children with externalizing problem behavior in routine care result in clinically significant changes?

Hautmann C, Stein P, Hanisch C, Eichelberger I, Plück J, Walter D, et al. (2009)

The clinical significance of a parent management training that is part of the Prevention Program for Externalizing Problem Behavior (PEP) was assessed in an effectiveness trial. Parent management training was offered under routine care conditions in a setting where a high proportion of children were expected to show clinically relevant symptoms of externalizing problem behavior. At the beginning of the study, 32.6% to 60.7% of children were classified as clinical cases (dysfunctional) on three outcome measures of child behavior problems. Three months after treatment, 24.8% to 60.4% of children were judged to be recovered. Parent management training can result in clinically significant changes in children with externalizing behavior problems.

Efficacy and safety of atomoxetine as add-on to psychoeducation in the treatment of attention deficit/hyperactivity disorder: a randomized, double-blind, placebo-controlled study in stimulant-naïve Swedish children and adolescents

Svanborg P, Thernlund G, Gustafsson PA, Hägglöf B, Poole L, Kadesjö B, et al. (2009)

OBJECTIVE: The primary objective of this study was to assess the impact of atomoxetine in combination with psychoeducation, compared with placebo and psychoeducation, on health-related quality of life (HRQL) in Swedish stimulant-naïve pediatric patients with attention deficit/hyperactivity disorder (ADHD). HRQL results will be presented elsewhere. Here, psychoeducation as well as efficacy and safety of the treatment are described. PATIENTS AND METHODS: A total of 99 pediatric ADHD patients were randomized to a 10-week double-blind treatment with atomoxetine (49 patients) or placebo (50 patients). Parents of all patients received four sessions of psychoeducation. Atomoxetine was dosed up to approximately 1.2 mg/kg day (< or = 70 kg) or 80 mg/day (> 70 kg). Improvement of ADHD symptoms was evaluated using the ADHD rating scale (ADHD-RS) and clinical global impression (CGI) rating scales. Safety was assessed based on adverse events (AEs). RESULTS: The study population was predominantly male (80.8%) and diagnosed with the combined ADHD subtype (77.8%). The least square mean (lsmean) change from baseline to endpoint in total ADHD-RS score was -19.0 for atomoxetine patients and -6.3 for placebo patients, resulting in an effect size (ES) of 1.3 at endpoint. Treatment response (reduction in ADHD-RS score of > or = 25 or > or = 40%) was achieved in 71.4 or 63.3% of atomoxetine patients and 28.6 or 14.3% of placebo patients. The lsmean change from baseline to endpoint in CGI-Severity was -1.8 in the atomoxetine group compared with -0.3 in the placebo group. The difference between treatments in CGI-Improvement at endpoint was -1.4 in favor of atomoxetine. No serious AEs occurred. The safety profile of atomoxetine was in line with the current label. CONCLUSIONS: Atomoxetine combined with psychoeducation was superior to placebo and psychoeducation in ADHD core symptoms improvement. The large ES might be a result of including stimulant-naïve patients only, but also may indicate a positive interaction between atomoxetine treatment and psychoeducation, possibly by increased compliance.

Efficacy of a camp-based intervention for childhood traumatic grief

McClatchey, I.S., Vonk, E.M. & Palardy, G. (2009)

Objective: This study examined the efficacy of a short-term, camp-based, trauma-focused grief intervention in reducing traumatic grief and posttraumatic stress disorder symptoms in parentally bereaved children. Method: For this nonequivalent comparison group study, 100 children were split into two groups, with one group serving as the immediate treatment group and the second group serving as the delayed treatment group. Results: The results were analyzed using chi-square, independent samples t tests, multiple and logistic regression and showed this short-term intervention to be followed by reduced traumatic grief and posttraumatic stress disorder symptoms. Conclusions: The results are discussed in relation to current research on and practice with bereaved children as well as implications for future research.

Emotional and cardiovascular sensitization to daily stress following childhood parental loss

Luecken, L., Kraft, A., Appelhans, B., & Enders, C. (2009)

Abstract
Adverse childhood events can influence the development of emotional and physiological self-regulatory abilities, with significant consequences for vulnerability to psychological and physical illness. This study evaluated stress sensitization and inoculation models of the impact of early parental death on stress exposure and reactivity in late adolescence/young adulthood. Ambulatory blood pressure (BP) and diary reports of minor stress were collected every 30 min during waking hours over a 24-hr period from 91 late adolescents/young adults (43 early bereaved, 48 nonbereaved). Across the sample, minor stressors were associated with elevated BP and negative affect. The bereaved group had lower BP than did the nonbereaved group. Within the bereaved group, higher perceived caring from the surviving parent was associated with fewer reports of minor stress and lower stress-related negative affect. Higher perceived parental caring during childhood was associated with lower BP across the sample and more frequent hassles in the nonbereaved group. Findings support both the stress inoculation and sensitization models, suggesting that childhood parental loss and parental caring exert important influences on children's development of stress sensitivity.

Emotional and cardiovascular sensitization to daily stress following childhood parental loss

Luecken, L., Kraft, A., Appelhans, B., & Enders, C. (2009)

Adverse childhood events can influence the development of emotional and physiological self-regulatory abilities, with significant consequences for vulnerability to psychological and physical illness. This study evaluated stress sensitization and inoculation models of the impact of early parental death on stress exposure and reactivity in late adolescence/young adulthood. Ambulatory blood pressure (BP) and diary reports of minor stress were collected every 30 min during waking hours over a 24-hr period from 91 late adolescents/young adults (43 early bereaved, 48 nonbereaved). Across the sample, minor stressors were associated with elevated BP and negative affect. The bereaved group had lower BP than did the nonbereaved group. Within the bereaved group, higher perceived caring from the surviving parent was associated with fewer reports of minor stress and lower stress-related negative affect. Higher perceived parental caring during childhood was associated with lower BP across the sample and more frequent hassles in the nonbereaved group. Findings support both the stress inoculation and sensitization models, suggesting that childhood parental loss and parental caring exert important influences on children's development of stress sensitivity.

Estimating the ‘impact’ of out-of-home placement on child well-being. Approaching the problem of selection bias

Berger L, Bruch S, Johnson E, James S & Rubin D (2009)

This study used data on 2,453 children age 4 to 17 from the National Survey of Child and Adolescent Well-Being and 5 analytic methods that adjust for selection factors to estimate the impact of out-of-home placement on children's cognitive skills and behavior problems. Methods included ordinary least squares (OLS) regressions and residualized change, simple change, difference-in-difference, and fixed effects models. Models were estimated using the full sample and a matched sample generated by propensity scoring. Although results from the unmatched OLS and residualized change models suggested that out-of-home placement is associated with increased child behavior problems, estimates from models that more rigorously adjust for selection bias indicated that placement has little effect on children's cognitive skills or behavior problems.

Ett ögonblick i sänder - mötet vid akut förvirringstillstånd, äldre patienters, närståendes och professionella vårdares perspektiv

Stenwall, E. (2009)

One older patient out of ten develops an acute confusional state (ACS) during their stay at an emergency care hospital, but there is little knowledge about encountering patients in an ACS. The overall aim of this thesis was to describe the complexity within the encounter between older patients in an ACS and relatives or professional carers, to gain a deeper understanding and increased knowledge about what takes place in the encounter and how this is experienced. The thesis is grounded in a qualitative research approach and a lifeworld perspective. Four empirical studies have been conducted at two geriatric wards at an emergency care hospital. The studies have been examined and approved by the Regional Board of Research Ethics. The aim of study I, II and III was to increase knowledge about how the encounter is experienced in retrospect, by interviewing professional carers (I), relatives (II) and patients who had suffered an ACS (III) about their experiences of encounters during the period of the patient being in an ACS. The fourth study (IV) aimed at increasing knowledge about the encounter from the viewpoint of the patient by focusing on dialogue and actions in the framework of the encounter with professional carers and relatives using a case study. A phenomenological approach was used for gathering and analysing data in studies I and II. In studies III and IV a latent content analysis was used for data analysis.
The results from study I show that professional carers experience the encounter with the patient as an encounter with a person, whose actions and words are unfamiliar and give rise to a lack of immediate trust. The encounter is experienced as unpredictable and the professional carers experience a need to always be on guard and use themselves as tools to reach out to, understand and create contact with the patient in the encounter. Relatives (II) experience the encounter with the patient as encountering a familiar person who has rapidly become unfamiliar, experiencing insecurity in how the patient in turn experiences the encounter and will react to the relative s words and actions. The relatives have to face this new situation with feelings of insecurity and sadness, find themselves exposed and the whole situation laborious. The patients (III) experience the encounter with professional carers and relatives as representing difficulties in connecting with and understanding the other. The patients experience difficulties in understanding what is happening and search for answers within themselves and from others. But the patients also experience a mutual understanding and trust between themselves and the other participants. The patients in the fourth study (IV) rely on professional carers and relatives to understand what is happening and why, to receive help in the encounter and are acknowledged with both understanding and suspicion. In the encounter each tries to convince the other about what is right, which reality is the true one, and there are often misunderstandings in time, place and foci.
The conclusion of the studies (I-IV) is that the professional carers, relatives and patients experience the encounter as something that places them in a vulnerable and arduous situation. In the encounter the feelings of lack of understanding, lack of trust and insecurity are mutual, but there is also a mutual wish to reach out to and understand the other. The character of the encounter changes frequently and rapidly and it is as if it takes place a split second at a time.

Factors discriminating among profiles of resilience and psychopathology in children exposed to intimate partner violence (IPV)

Graham-Bermann, S. A., Gruber, G., Howell, K. H., & Girz, L. (2009)

Abstract
OBJECTIVE:
To evaluate the social and emotional adjustment of 219 children in families with varying levels of intimate partner violence (IPV) using a model of risk and protection. To explore factors that differentiate children with poor adjustment from those with resilience.
METHODOLOGY:
Mothers who experienced IPV in the past year and their children ages 6-12 were interviewed. Standardized measures assessed family violence, parenting, family functioning, maternal mental health, and children's adjustment and beliefs.
RESULTS:
Using cluster analysis, all cases with valid data on the Child Behavior Checklist, Child Depression Inventory, General Self-Worth and Social Self-Competence measures were described by four profiles of children's adjustment: Severe Adjustment Problems (24%); children who were Struggling (45%); those with Depression Only (11%); and Resilient (20%) with high competence and low adjustment problems. Multinomial logistic regression analyses showed children in the Severe Problems cluster witnessed more family violence and had mothers higher in depression and trauma symptoms than other children. Resilient and Struggling children had mothers with better parenting, more family strengths and no past violent partner. Parents of children with Severe Problems were lacking these attributes. The Depressed profile children witnessed less violence but had greater fears and worries about mother's safety.
CONCLUSION:
Factors related to the child, to the mother and to the family distinguish different profiles of adjustment for children exposed to IPV who are living in the community. Resilient children have less violence exposure, fewer fears and worries, and mothers with better mental health and parenting skills, suggesting avenues for intervention with this population.
PRACTICE IMPLICATIONS:
Findings suggest that child adjustment is largely influenced by parent functioning. Thus, services should be targeted at both the child and the parent. Clinical interventions shaped to the unique needs of the child might also be tested with this population.

Factors related to Alcohol and Drug Consumption in Swedish Widows.

Grimby A, Johansson ÅK. (2009)

The use of alcohol and medications among Swedish widows was analyzed in relation to various background variables. In Total, 1053 widows (640 widows younger than 65 years and 413 widows older than 65 years) answered the questionnaire. Many reported increased fatigue and sleeping problems. Around one-third of the widows reported drinking alcohol for relief of grief and inadequate support. Association existed between grief and increased intake of sedatives and sleeping pills, and between grief and drinking for relief of grief, as well as increase in intake of sedatives. In widows older than 65 years, perception of bad health, negative outlook for the future, and insufficient support seemed to increase the risk of more sedatives and sleeping pills. Negative outlook for the future also tended to lead to a heightened risk for increased intake of alcohol. There seems to be remaining health problems a long time after bereavement, and counseling may be needed especially when drugs and alcohol are extensively used.

Facts and Figures on Long-Term Care – Europe and North America

Huber, M (2009)

This book displays new data on up to 56 countries of the UN-European region (comprising North America, Europe including Russia, Central Asia and Israel).

Despite growing concerns over ageing and its social and fiscal impact, surprisingly scarce information is available on basic indicators concerning long-term care for dependent older people. The present publication seeks to fill this gap of knowledge as it searches for answers to queries and puzzles such as?

What exactly do we mean by long-term care? Where to set the boundaries between family or informal and formal care, between home and residential / institutional care, between public and privately financed care?

Will demographic ageing further accelerate? How much gain in life ahead at retirement age and during the decades of third age are actually observed and to be expected in the future? To what an extent will longer lives correspond to healthier ones? Are there limits in shifting the oldest-old threshold - and correspondingly increased dependency risks - upwards?

What are the typical living arrangements of older people? How do they differ across countries, or between women and men? What are the social implications of living alone, in couples, with children or others? How much mobility is there in later life? And how much of it is preferred, expected, or involuntary?

Who provides care for dependent older people within the family? Is care-giving always a women?s world? How do adult children and dependent parents feel about care arrangements? Who shares which burdens? Can work and family duties be balanced? What are people?s preferences?

What are the differences between cash for care and attendance allowances or care leaves? How do the roles of residential care change? Is care provided mostly in institutions or at home? Where is formal care most widely available? Why are there so many more women than men in residential care?

Which countries spend the most in long-term care? Most people are cared for at home? is that where most money is spent? What are the public / private mixes in long-term care spending? What does a closer look at country differences in expenditure levels, spending patterns and forms of generosity disclose? What trade-offs are there between different forms of generosity ? and which ones are fiscally or socially sustainable?

Are cash benefits one effective way to keep expenditure under control? What if....all countries would spend up to the EU-15 level? Demographics alone are the main driving force behind expenditure in long-term care? or not? How much can it cost to be cared for in an institution?

Familjeliv

Johansson T. (2009)

Det inte längre självklart vad en familj är för något. "Kärnfamiljen" förändras och det skapas nya sätt att "göra familj". Därmed uppstår nya frågor om familjen: Hur ser dagens familjer egentligen ut?

Läs mer
Den här boken tar ett grepp om det moderna familjelivet och behandlar olika typer av familjekonstellationer - vilka visar familjens inplacering i en ny politisk, social och emotionell tid. Boken ger en inträngande bild av familjeliv i Sverige, men presenterar också utblickar mot mer globala bilder av familjeliv.

Om författarna
Thomas Johansson är professor i socialpsykologi på Institutionen för kultur, estetik och medier vid Göteborgs universitet.

FIB-projektet i Uppsala län. Föräldrar med intellektuella begränsningar. Kartläggning av målgruppen 2005-2008

Pistol, Sven-Erik (2009)

FIB-projektet är ett 3-årigt samverkansprojekt i Uppsala län som syftar till att
utveckla stöd till barn och deras föräldrar i familjer där någon av föräldrarna har
en utvecklingsstörning eller andra kognitiva svårigheter, som kan förekomma
vid t.ex. svagbegåvning eller neuropsykiatriska funktionsnedsättningar.
För att kunna bedöma omfattningen av stödbehov och planera utifrån det, är det
viktigt att veta hur många familjer det finns som tillhör målgruppen och hur
många barn de har. En del i projektet har därför varit att göra en kartläggning av
målgruppens storlek i Uppsala län.
En bred förankring på olika nivåer i Landstingets och kommunernas
organisationer har krävts för att kunna genomföra kartläggningen.
Olika grupper av professionella, som möter familjerna i sin yrkesutövning, har
gjort bedömningen av vilka som tillhör målgruppen och som är i behov av
anpassat stöd.
Resultatet av kartläggningen bekräftar det som yrkesverksamma i olika
sammanhang omtalat, nämligen att det finns ett stort antal barn och föräldrar
med behov av stöd på grund av kognitiva svårigheter hos någon av föräldrarna.
Totalt handlar det om 602 familjer med sammanlagt 1092 barn som bedöms vara
i behov av stöd på grund av föräldrarnas kognitiva svårigheter. Mer än 50 % av
barnen har egna kognitiva svårigheter.
Den variation vi kan konstatera mellan länets olika kommuner kan bero på
befolkningsstruktur, förekomst av särskola, tidigare befintliga institutioner och
tillgång på bostäder och sysselsättning.
Kartläggningen ger ett underlag för planeringen av insatser till familjerna. Den
visar hur många familjer och barn det finns och kan hos olika verksamheter
ställas i relation till de riktade insatser som görs. Kartläggningen ger också ett
underlag för ökad samverkan och samplanering mellan olika samhällsinstanser
då många professionella arbetar med samma familjer utan varandras kännedom.

Folkhälsorapport

Socialstyrelsen (2009)

Folkhälsorapport 2009 visar bland annat att risken att dö i hjärtinfarkt och stroke har minskat väsentligt, medan dödligheten i bröstcancer däremot har minskat endast marginellt, och dödligheten i lungcancer fortfarande ökar bland kvinnor, medan den sjunker bland män. Psykisk ohälsa är vanligt hos yngre kvinnor; självmordsförsöken ökar.

Foster children: a longitudinal study of placements and family relationships

Andersson, G. (2009)

Foster children's family relationships have been one of the themes in a longitudinal study, starting with a disadvantaged group of children, 0–4 years of age when taken into care and placed in a children's home in Sweden. Seven rounds of data collection were carried out; the last two when the children were young adults. This article is about those 20 children in the study group who, in addition to temporary residential care at an early age, have experiences from foster care, either for the remainder of their childhood or before or after a period of reunion. Placement history is put in relation to family relationships, i.e. relationships to birth family and foster family. The categorisation in secure and insecure relationships or attachment patterns is based on interviews with the young adults, with a retrospect of previous relationships. The connection between placement history and family relationship is not obvious in this high-risk group. However, inclusive attitudes from the foster family towards the child's family promote continuity and a sense of security, also in periods of reunion or re-placement, and facilitate foster children's hard work in coming to terms with their family background and finding their own way.

Gabriellas resa: I skuggan gömmer sig solkatterna

Elisabeth Hagborg, Tove Hennix (2009)

I Gabriellas liv finns mycket mörker. Det finns händelser som kastar skuggor ... där mardrömmar kan gömma sig och minne kan lura.Men i det mörka finns också små stänk av ljus. Gabriella behöver hjälp att låta ljuset växa. Hjälp att resa tillbaka in i skuggan, städa ur och låta solkatterna dansa.
I den här boken har Elisabeth Hagborg samlat många års yrkeserfarenhet av vad det kan innebära att växa upp i ett dysfunktionellt hem och tillsammans med illustratören Tove Hennix skapat en bok om Gabriella.

Gender symmetry, sexism, and intimate partner violence

Allen, C. T., Swan, S. C., & Raghavan, C. (2009)

This study of a predominantly Hispanic sample of 92 male and 140 female college students examines both gender symmetry in intimate partner violence (IPV) and inconsistent relationships found in previous studies between sexist attitudes and IPV. Results indicate that although comparable numbers of men and women perpetrate and are victimized in their relationships with intimate partners, the path models suggest that women's violence tends to be in reaction to male violence, whereas men tend to initiate violence and then their partners respond with violence. Benevolent sexism was shown to have a protective effect against men's violence toward partners. Findings highlight the importance of studying women's violence not only in the context of men's violence but also within a broader sociocultural context.

Genetic and non-genetic influences on the development of co-occurring alcohol problem use and internalizing symptomatology in adolescence: a review

Saraceno L, Munafó M, Heron J, Craddock N, van den Bree MBM. (2009)

AIMS:
Alcohol problem use during adolescence has been linked to a variety of adverse consequences, including cigarette and illicit drug use, delinquency, adverse effects on pubertal brain development and increased risk of morbidity and mortality. In addition, heavy alcohol-drinking adolescents are at increased risk of comorbid psychopathology, including internalizing symptomatology (especially depression and anxiety). A range of genetic and non-genetic factors have been implicated in both alcohol problem use as well as internalizing symptomatology. However, to what extent shared risk factors contribute to their comorbidity in adolescence is poorly understood.
DESIGN:
We conducted a systematic review on Medline, PsycINFO, Embase and Web of Science to identify epidemiological and molecular genetic studies published between November 1997 and November 2007 that examined risk factors that may be shared in common between alcohol problem use and internalizing symptomatology in adolescence.
FINDINGS:
Externalizing disorders, family alcohol problems and stress, as well as the serotonin transporter (5-HTT) S-allele, the monoamine oxidase A (MAOA) low-activity alleles and the dopamine D2 receptor (DDR2) Taq A1 allele have been associated most frequently with both traits. An increasing number of papers are focusing upon the role of gene-gene (epistasis) and gene-environment interactions in the development of comorbid alcohol problem use and internalizing symptomatology.
CONCLUSIONS:
Further research in adolescents is warranted; the increasing availability of large longitudinal genetically informative studies will provide the evidence base from which effective prevention and intervention strategies for comorbid alcohol problems and internalizing symptomatology can be developed.

Moderate versus severe early life stress: Associations with stress reactivity and regulation in 10-12-year-old children

Gunnar, M. R., Frenn, K., Wewerka, S. S., & Van Ryzin, M. J. (2009)

Early life stress (ELS) is expected to increase reactivity of the hypothalamic-pituitary-adrenocortical (HPA) axis; however, several recent studies have shown diminished cortisol reactivity among adults and children with ELS exposure. The goal of this study was to examine cortisol activity in 10-12-year-old internationally adopted children to determine if moderate and severe ELS have different impacts on the HPA axis. Salivary cortisol and two measures of autonomic activity were collected in response to the Trier Social Stress Test for Children (TSST-C). Three groups reflecting moderate, severe, and little ELS were studied: early adopted children who came predominantly from foster care overseas (early adopted/foster care (EA/FC), n=44), later adopted children cared for predominantly in orphanages overseas (late adopted/post-institutionalized (LA/PI), n=42) and non-adopted (NA) children reared continuously by their middle- to upper-income parents in the United States (n=38). Diminished cortisol activity was noted for the EA/FC group (moderate ELS), while the LA/PI group (severe ELS) did not differ from the NA group. Overall, few children showed cortisol elevations to the TSST-C in any group. The presence/absence of severe growth delay at adoption proved to be a critical predictive factor in cortisol activity. Regardless of growth delay, however, LA/PI children exhibited higher sympathetic tone than did NA children. These results suggest that moderate ELS is associated with diminished cortisol activity; however, marked individual differences in cortisol activity among the LA/PI children suggest that child factors modify the impact of severe ELS. Lack of effects of severe ELS even for growth delayed children may reflect the restorative effects of adoption or the generally low responsiveness of this age group to the TSST-C.

National Research C. Preventing Mental, Emotional, and Behavioral Disorders Among Young People : Progress and Possibilities.

Warner KE, Boat TF, O'Connell ME (2009)

Contributors

National Research Council; Division of Behavioral and Social Sciences and Education; Institute of Medicine; Board on Children, Youth, and Families; Committee on the Prevention of Mental Disorders and Substance Abuse Among Children, Youth and Young Adults: Research Advances and Promising Interventions; Mary Ellen O'Connell, Thomas Boat, and Kenneth E. Warner, Editors
Description

Mental health and substance use disorders among children, youth, and young adults are major threats to the health and well-being of younger populations which often carryover into adulthood. The costs of treatment for mental health and addictive disorders, which create an enormous burden on the affected individuals, their families, and society, have stimulated increasing interest in prevention practices that can impede the onset or reduce the severity of the disorders.

Nationella indikatorer för God vård: hälso och sjukvårdsövergripande indikatorer och indikatorer i Socialstyrelsens nationella riktlinjer

Socialstyrelsen (2009)

Socialstyrelsen presenterar för första gången en samlad uppsättning nationella indikatorer för God vård. Därmed tas ytterligare steg i arbetet med att strukturera uppföljningen av hälso- och sjukvården.

God vård och omsorg

Socialstyrelsen lanserade begreppet God vård 2007 och begreppet
God kvalitet i socialtjänsten 2008. Idag används det gemensamma begreppet God vård och omsorg som samlingsbegrepp för de egenskaper en god vård respektive en god kvalitet i socialtjänsten. God vård och omsorg utgår från lagstiftningen i Hälso- och sjukvårdslagen och Socialtjänstlagen. De sex områdena är

vården och omsorgen ska vara kunskapsbaserad och bygga på bästa tillgängliga kunskap
vården och omsorgen ska vara säker. Riskförebyggande verksamhet ska förhindra skador. Verksamheten ska också präglas av rättssäkerhet
vården och omsorgen ska vara individanpassad och ges med respekt för individens specifika behov, förväntningar och integritet. Individen ska ges möjlighet att vara delaktig
vården och omsorgen ska vara effektiv och utnyttja tillgängliga resurser på bästa sätt för att uppnå uppsatta mål
vården och omsorgen ska vara jämlik och tillhandahållas och fördelas på lika villkor för alla
vården och omsorgen ska vara tillgänglig och ges i rimlig tid och ingen ska behöva vänta oskälig tid på vård eller omsorg.
Innebörden av begreppet God vård inom hälso- och sjukvård förtydligas i rapporten utifrån det arbete som sex expertarbetsgrupper genomfört och inkomna synpunkter från hälso- och sjukvården.

Uppföljningsområden och indikatorer

De hälso- och sjukvårdsövergripande nationella indikatorer som Socialstyrelsen presenterar i denna rapport presenteras inom ramen för uppföljningsområden. Dessa uppföljningsområden visar på viktiga aspekter inom hälso- och sjukvården som tillsammans belyser processer, resultat och kostnaden utifrån God vård.

Sammanlagt presenteras 24 uppföljningsområden och 28 hälso- och sjukvårdsövergripande indikatorer. Rapporten visar på en brist på information för möjligheten att systematiskt och heltäckande följa upp en stor del av de uppföljningsområden som lyfts fram. Genom att identifiera områden som viktiga för uppföljning av God vård tar Socialstyrelsen ett ansvar för att fortsättningsvis stödja arbetet med att utveckla sätt att följa upp de områden som lyfts fram.

Vidare presenteras i rapporten patient- och sjukdomsspecifika indikatorer baserade på Socialstyrelsens nationella riktlinjer. För närvarande finns nationella riktlinjer med indikatorer för hjärtsjukvård, prostatacancer, bröstcancer och kolorektalcancer. Inom kort publiceras även nationella riktlinjer för strokesjukvård samt diabetessjukvård. Ett flertal nationella riktlinjer med indikatorer kommer att publiceras under 2010 och 2011. Indikatorer kommer då att finnas för demens, depression och ångest, rörelseorganens sjukdomar, sjukdomsförebyggande åtgärder, psykosociala insatser för schizofreni samt lungcancer.

Nationella öppna jämförelser och utvärderingar

Socialstyrelsen kommer att använda såväl de hälso- och sjukvårdsövergripande indikatorerna som indikatorerna från de nationella riktlinjerna i återkommande nationella öppna jämförelser och som underlag för uppföljningar och utvärderingar av hälso- och sjukvården. Syftet är att öka tillgängligheten till information om hälso- och sjukvårdens processer, resultat och kostnader och målsättningen är att denna information i sin tur ska användas för förbättringar i hälso- och sjukvården.

Socialstyrelsen kommer också att utifrån de öppna jämförelserna, uppföljningarna och utvärderingarna ge tydliga rekommendationer till såväl landstingen som staten om områden där förbättringar av hälso- och sjukvården bör genomföras. Myndigheten kommer även att bedöma kvaliteten och effektiviteten i hälso- och sjukvården.

Nationellt kunskapsnätverk med inriktning på psykiska funktionshinder och hjälpmedel

Folkesson Per (2009)

Syftet med projektet var att starta ett nationellt kunskapsnätverk inom området psykiska funktionshinder och hjälpmedel. Kunskapsnätverket ska fungera som utbildare inom området, visa på arbetsmetoder för utprovning av hjälpmedel, ge information, råd och stöd i förskrivningsprocesser och utgöra en mötesplats för olika aktörer inom området psykisk ohälsa

Official incidents of domestic violence: Types, injury, and associations with nonofficial couple aggression

Capaldi, D. M., Shortt, J. W., Kim, H. K., Wilson, J., Crosby, L., & Tucci, S. (2009)

Official police reports of intimate partner violence (IPV) were examined in a community sample of young, at-risk couples to determine the degree of mutuality and the relation between IPV arrests and aggression toward a partner (self-reported, partner reported, and observed). Arrests were predominantly of the men. Men were more likely to initiate physical contact, use physical force, and inflict injuries than women, although few injuries required medical attention. In the context of nonofficial aggression toward a partner, overall, women had higher levels of physical and psychological aggression compared to men, and levels of severe physical aggression did not differ by gender. Couples with an IPV arrest were more aggressive toward each other than couples with no IPV arrests; however, nonofficial levels of aggression were not higher for men than for women among couples experiencing an IPV incident.

Spindeln i nätet. En kartläggning av demenssjuksköterskor i Stockholms län. 2009:3

Meinow, B. (2009)

I Stockholms län finns (hösten 2008) en demenssjuksköterska i tio av länets
kommuner, och demensvårdsutvecklare med delvis liknande funktioner i
ytterligare två. De har bildat ett regionalt nätverk och träffas regelbundet. Sin
nuvarande tjänst har de haft mellan några månader till 11 år. De har alla en lång
erfarenhet av arbete inom äldrevården, och flera av dem har skaffat sig olika
former av vidareutbildning inom demensområdet. Hälften har arbetat som
sjuksköterska i särskilt boende. De har vanligen blivit ombedda att söka tjänsten
utifrån sitt tidigare kända engagemang, och i några fall är de själva initiativtagare
till att tjänsten finns. Fyra av demenssjukskötersketjänsterna och de båda
demensvårdsutvecklartjänsterna finansieras med nationella stimulansmedel och är
således projekttjänster.
Intervjuerna visar att arbetsuppgifterna varierar mellan kommunerna. Skillnader
finns i huvudsak vad gäller graden av samarbete med andra aktörer inom
landstingets äldrevård och den kommunala äldreomsorgen och huruvida tonvikten
i arbetet lutar mot anhörigstöd eller utbildningsfrågor.
En majoritet av demenssjuksköterskorna beskriver sin funktion som "spindeln i
nätet", dvs. de har en övergripande funktion i kommunen som sakkunnig inom
demensfrågor, både för personer med minnesproblem och deras närstående,
personal inom äldreomsorg och sjukvård, kommunledningen och allmänheten.
Information, råd och stöd till personer med minnessvårigheter och deras
närstående framställs som en central uppgift. Där funktionen är bäst etablerad kan
demenssjuksköterskan komma in i ett tidigt stadium redan före diagnos. Det kan
vara personen själv som upplever att han eller hon har minnessvårigheter som tar
kontakt, en närstående eller någon inom vården eller äldreomsorgen.
Demenssjuksköterskan initierar minnesutredningar, hjälper personen och dennes
närstående att hitta och få den hjälp de behöver inom sjukvård och äldreomsorg,
förmedlar kontakter och motiverar att ta emot hjälpen. Stödinsatser som
demenssjuksköterskan informerar om och i vissa fall ansvarar för omfattar t.ex.
dagvård, anhöriggrupper, avlösarservice och öppna verksamheter med kafé och
information. Vägledning i hur man som frisk anhörig bemöter en person med
demenssjukdom visar sig vara en kärnfråga i enskilda stödsamtal med närstående.
De flesta demenssjuksköterskor beskriver ett väl fungerande samarbete med en
eller flera aktörer inom äldreomsorg och sjukvård, vanligast biståndshandläggare
och anhörigkonsulenter. I några kommuner har demenssjuksköterskan och
minnesmottagningen vid den geriatriska kliniken utvecklat rutiner för samarbete
och informationsöverföring. Däremot saknas i de flesta kommuner ett
kontinuerligt samarbete med husläkarverksamheterna.
Flertalet demenssjuksköterskor och de två demensvårdsutvecklarna arbetar med
utbildning för personal inom kommunens äldreomsorg. Medlen från
Kompetensstegen och stimulansmedel har möjliggjort utbildningssatsningar.
Demenssjuksköterskorna kan också fungera som handledare och konsulter vid
2
speciella problem. I några kommuner har man satsat på att utbilda i olika metoder,
som reminiscens och validation och bedömningsinstrumentet GBS.
Utöver sin funktion som sakkunnig i demensfrågor för kommunens invånare samt
personal inom sjukvård och äldreomsorg har samtliga demenssjuksköterskor
också uppdraget att informera allmänheten om demenssjukdomar samt om sin
egen roll i kommen, t.ex. genom kontakt med frivilligorganisationer.
Att följa utvecklingen i demensvården är en central del av funktionen som
sakkunnig i demensfrågor. Demenssjuksköterskorna har därmed också en viktig
roll i utvecklingsarbetet i den egna kommunen. Intervjuerna visar dock på olika
erfarenheter när det gäller att nå fram med sina erfarenheter och idéer till den
kommunala ledningen. Delvis synes detta hänga samman med var i
organisationen de finns. Ju mer centralt, desto större är möjligheten att ha en bra
dialog med kommunledningen.
Ett stort problem som demenssjuksköterskorna ser inom demensvården såväl som
i sin egen yrkesroll är bristen på samverkan mellan olika aktörer, särskilt mellan
de två huvudmännen. En annan svårighet är alltjämt på sina håll att få
husläkarverksamheter att genomföra demensutredningar.
Flera demenssjuksköterskor lyfter fram att det behövs mer utbildning kring olika
demenssjukdomar och lämpliga förhållningssätt på alla nivåer inom sjukvård och
äldreomsorg. Å andra sidan påpekas också att bemanningen inom den kommunala
äldreomsorgen måste ses över så att personalen har möjlighet att omsätta sina
kunskaper i praktiken.
När det gäller utvecklingen av demensvården förespråkar samtliga
demenssjuksköterskor att det behövs personer på husläkarverksamheterna att
samarbeta med, som tillsammans med demenssjuksköterskan kan vara en
"paraplycentral". I sin framtidsvision ser de, med inspiration från exempelvis
Kalmar läns landsting, att det borde inrättas en funktion som demenssjuksköterska
vid husläkarverksamheterna, med särskilt ansvar för demensutredningar och
samverkan med minnesmottagning och kommun. I kommunen hoppas flera
demenssjuksköterskor på utvecklingen av hemtjänstteam som enbart arbetar med
personer med demenssjukdom. Till stöd för dessa funktioner ser de en utveckling
där demenssjuksköterskan tillsammans med fler professioner bildar ett
demensteam som är gemensamt för de båda huvudmännen.
Sammanfattningsvis visar intervjuerna att funktionen demenssjuksköterska är
mångfacetterad och riktar sig mot många olika aktörer. Det varierar dock mellan
kommunerna i vilken utsträckning man i praktiken har möjlighet att vara
"spindeln i nätet". En slutsats är att samarbete med alla aktörer inom demensvården
är en central förutsättning för att demenssjuksköterskan ska kunna bistå
med råd och stöd till personer med minnesproblem och deras närstående redan i
ett tidigt stadium – och därmed förbättra möjligheten till en obruten vårdkedja. Ju
mer heltäckande samarbetet med sjukvården och äldreomsorgen är desto bättre
förutsättningar finns också för demenssjuksköterskan att föra ut kunskap och
3
information till personal. Rutinerna för kontakt och samarbete med t.ex.
husläkarverksamheter, hemtjänst och biståndshandläggare behöver vara så säkra,
tydliga och väl förankrade hos alla parter att de även fungerar i verksamheter med
hög personalomsättning.
En central position i kommunstrukturen och en direkt dialog med
kommunledningen är viktiga förutsättningar för att kommunen ska kunna dra
nytta av demenssjuksköterskans kunskaper i arbetet att utveckla demensvården.
I synnerhet i större kommuner är demenssjuksköterskan ofta tvungen att prioritera
vissa arbetsuppgifter. Ofta lägger man då tonvikten antingen på anhörigstöd eller
på sin utbildnings- och rådgivningsfunktion för personal inom äldreomsorgen. I
en kommun har lösningen varit att demenssjuksköterskan fungerar som en
projektledare och arbetar i ett team om fyra personer som specialiserat sig på olika
uppgifter såsom anhörigstöd, utbildning och utvecklingsarbete. En annan tänkbar
lösning är att flera demenssjuksköterskor specialiserar sig på olika uppgifter.

Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK).

Bakas T, Farran CJ, Austin JK, Given BA, Johnson EA, Williams LS. (2009)

Purpose: Stroke caregivers often express the need for information about stroke and assistance with stroke-related care in the early discharge period. The Telephone Assessment and Skill-Building Kit (TASK) is an 8-week program that addresses caregiver needs. This study explored the efficacy of the TASK program in improving stroke caregiver outcomes. Method: Guided by a conceptual model, 6 outcomes (optimism, task difficulty, threat appraisal, depressive symptoms, life changes, general health perceptions) were measured in 40 caregivers randomized to the TASK (n = 21) or an attention control group (n = 19). Data were analyzed using analysis of covariance (ANCOVA), controlling for baseline scores and minutes spent with the nurse. Results: Significant increases in optimism at 4 weeks, 8 weeks, and 12 weeks were found, with medium effect sizes for the TASK group relative to the control group (p < .05). Significant improvements in task difficulty at 4 weeks, and threat appraisal at both 8 weeks and 12 weeks were also found (p < .05). Conclusion: Caregivers receiving the TASK intervention improved in optimism, task difficulty, and threat appraisal. Further testing of an enhanced version of the TASK program is warranted, with attention directed toward more distal stroke caregiver outcomes.

Stöd till anhöriga ställer krav på strategi - Meddelandeblad

Socialstyrelsen (2009)

Meddelandebladet innehåller information om att kommuner bör analysera och ha en aktiv strategi för sitt arbete med anhörigstöd. Detta är ett av flera meddelandeblad kopplade till bestämmelsen om att kommunen ska erbjuda anhörigstöd.

Stöd till anhöriga till personer under 65 år. Fokus på anhöriga, nr 15

Lindgren, Karin (2009)

Sedan den 1 juli 2009 ska landets kommuner erbjuda stöd till anhöriga
som vårdar eller stödjer någon som är långvarigt sjuk, äldre eller har
funktionshinder. Karin Lindgren som arbetar på Socialstyrelsens enhet
för funktionshindersfrågor vill med denna artikel uppmärksamma anhö-
riga till yngre personer, en grupp som anhörigstödet i många kommuner
ännu inte har så stor erfarenhet av. Förhoppningsvis kan artikeln vara
till hjälp när det gäller att börja tänka på hur stöd anpassat till denna
målgrupp av anhöriga ska utformas

Substance-Abusing Parents in the Criminal Justice System: Does Substance Abuse Treatment Improve Their Children's Outcomes?

Phillips SD, Gleeson JP, Waites-Garrett M. (2009)

The expansion of the criminal justice system over the last several decades helped to focus attention on children of incarcerated parents, many of whom have parents with substance abuse problems. Since the 1990's, a national grassroots campaign has been underway to make substance abuse treatment an alternative to incarceration for parents who commit non-violent crimes. The question of interest in this article is what evidence there is, if any, that treating parental substance abuse changes children's outcomes. To answer this question, a systematic search was conducted for evidence that parental substance abuse treatment either (1) prevents children from developing serious problems (e.g., substance abuse, emotional/behavioral problems, and delinquency) or (2) ameliorates problems if children have already developed them. The key finding is that existing research is limited to studies primarily of the birth outcomes of children born to pregnant and perinatal substance-abusing mothers. Little is known about how treating parents' substance abuse problems affects the outcomes of older children or children of substance-abusing fathers.

The Delivery of Public Health Interventions via the Internet: Actualizing Their Potential

Bennett, GG., & Glasgow, RE. (2009)

The Internet increasingly serves as a platform for the delivery of public health interventions. The efficacy of Internet interventions has been demonstrated across a wide range of conditions. Much more work remains, however, to enhance the potential for broad population dissemination of Internet interventions. In this article, we examine the effectiveness of Internet interventions, with particular attention to their dissemination potential. We discuss several considerations (characterizing reach rates, minimizing attrition, promoting Web site utilization, use of tailored messaging and social networking) that may improve the implementation of Internet interventions and their associated outcomes. We review factors that may influence the adoption of Internet interventions in a range of potential dissemination settings. Finally, we present several recommendations for future research that highlight the potential importance of better understanding intervention reach, developing consensus regarding Web site usage metrics, and more broadly integrating Web 2.0 functionality.

The effectiveness of family therapy and systemic interventions for child-focused problems

Carr A. (2009)

This review updates a similar paper published in the Journal of Family Therapy in 2001. It presents evidence from meta-analyses, systematic literature reviews and controlled trials for the effectiveness of systemic interventions for families of children and adolescents with various difficulties. In this context, systemic interventions include both family therapy and other family-based approaches such as parent training. The evidence supports the effectiveness of systemic interventions either alone or as part of multimodal programmes for sleep, feeding and attachment problems in infancy; child abuse and neglect; conduct problems (including childhood behavioural difficulties, ADHD, delinquency and drug abuse); emotional problems (including anxiety, depression, grief, bipolar disorder and suicidality); eating disorders (including anorexia, bulimia and obesity); and somatic problems (including enuresis, encopresis, recurrent abdominal pain, and poorly controlled asthma and diabetes).

The effects of parental unresolved trauma on second generation Cambodian Adolescents

Muong, S. (2009)

In the Holocaust literature, considerable attention has been given to the psychological impact of Holocaust survivors' trauma on their offspring. There is some evidence to show that parenting styles and parent-child communication regarding the Holocaust are important mechanisms through which survivors' trauma affects the psychological adjustment of their offspring. The present study extends this work to a Cambodian context in focusing on intergenerational effects of trauma stemming from the Khmer Rouge regime. Specifically, the effects of parental unresolved trauma, in terms of the mother's PTSD symptoms, on second generation Cambodian adolescents were examined. Extrapolating from the findings in the Holocaust literature on second generation effects of trauma, it was hypothesized that the severity of the mother's trauma symptoms stemming from the Khmer Rouge regime would be predictive of her child's level of psychological distress, and that this relationship would be mediated by parenting style and parent-child communication. It was also predicted that the child's level of bicultural integration would serve as a protective factor in moderating the impact of the mother's trauma such that a child with a higher level of bicultural integration would be less negatively psychologically affected.

The incidence and course of depression in bereaved youth 21 months after the loss of a parent to suicide, accident, or sudden natural death

Brent, D., Melhem, N., Donohoe, M.B., & Walker, M. (2009)

Abstract
OBJECTIVE:
This study examined effects of bereavement 21 months after a parent's death, particularly death by suicide.
METHOD:
The participants were 176 offspring, ages 7-25, of parents who died by suicide, accident, or sudden natural death. They were assessed 9 and 21 months after the death, along with 168 nonbereaved subjects.
RESULTS:
Major depression and alcohol or substance abuse 21 months after the parent's death were more common among bereaved youth than among comparison subjects. Offspring with parental suicide or accidental death had higher rates of depression than comparison subjects; those with parental suicide had higher rates of alcohol or substance abuse. Youth with parental suicide had a higher incidence of depression than those bereaved by sudden natural death. Bereavement and a past history of depression increased depression risk in the 9 months following the death, which increased depression risk between 9 and 21 months. Losing a mother, blaming others, low self-esteem, negative coping, and complicated grief were associated with depression in the second year.
CONCLUSIONS:
Youth who lose a parent, especially through suicide, are vulnerable to depression and alcohol or substance abuse during the second year after the loss. Depression risk in the second year is mediated by the increased incidence of depression within the first 9 months. The most propitious time to prevent or attenuate depressive episodes in bereaved youth may be shortly after the parent's death. Interventions that target complicated grief and blaming of others may also improve outcomes in symptomatic youth with parental bereavement.

The influence of fracture on activity, social participation and quality of life among older adults. Results from the population study Good Ageing in Skåne.

Ekström, H. (2009)

The aims of this thesis where the target population has been older adults suffering from osteoporosis related fractures were firstly to study the association between functional impairment due to pain, and activity expressed as walking speed (WS) and Timed Get up and-Go (TUG), and to examine the associations between functional impairment and social participation (SP) and quality of life (QoL). Secondly, to study the association between activity and SP and QoL. Thirdly, to study the effect of informal and/or formal support on SP.
In study I activity 3 years after trauma and stratified for pain was examined. For fractured, both with and without pain, higher WS was noted for subjects with the last fracture more than 3 years ago compared to subjects fractured less than 3 years ago. The median time for fractured in pain and a trauma more than 3 years ago walking 15m at a self selected speed was 14 s compared to 20 s (p = 0.04) for subjects in pain and fractured less than 3 years ago. Both fracture and pain independently explained levels of WS.
In study II the association between functional impairment and SP and QoL was investigated. QoL included Life satisfaction index A (LSI- A) and SF-12 consisting of a mental component (MCS) and a physical component (PCS). Fractured with and without pain were compared to non-fractured controls and in 12 out of 21 activities fewer fractured in pain took part compared to controls. Regarding QoL, fractured in pain scored lower for MCS, PCS and LSI-A, compared to controls.
In study III the association between WS, TUG and QoL and SP was examined. In a logistic regression model adjusting for confounders, significant associations remained between SP and WS, TUG where an increased probability of taking part increased with a faster performance.
In study IV the extent of SP due to formal and/or informal care was examined. Adjusted odds ratios for SP using non support as a reference, showed that subjects with informal support did not have a lower probability for participating while subjects with informal and/or formal support had a significant lower probability for SP.
In conclusion, fractured had a limitation in activity. For both fractured with and without pain a limitation in WS was observed up to three years after trauma suggesting that there is rehabilitation potential the first years after fracture. A health condition with fracture and a functional impairment due to pain, or a deterioration WS or TUG are associated with a restriction in SP and a lowered QoL. The results also substantiate the influence of informal support i.e. care given by relatives and friends have decisive influence to maintain SP and thereby an active lifestyle.

Tourette syndrome in children and adolescents: Special considerations

Eapen, V. and R. Črnčec (2009)

Tourette syndrome (TS) affects people of all ages, with onset in early childhood and continuing through the different stages of the life cycle into adolescence and adults. This review focuses on barriers to diagnosis and challenges in the management of young patients with TS. Barriers to identification occur at multiple levels, including detection in the community setting (including schools), parents' help-seeking behavior, and cultural influences on such behavior, as well as diagnosis by the medical provider. Challenges to management include unfamiliarity of primary care providers, inconsistencies in the diagnosis and management plan, and failure to recognize comorbid conditions, as well as inadequate knowledge and lack of resources to effectively deal with comorbidities. In addition to the complexities posed by pharmacological interactions, there are unique psychosocial challenges experienced by young people with TS and their families. Effective communication and collaboration between families, health care providers, and school personnel, as well as supportive communities, are essential components of comprehensive management. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Translucency and learnability of Blissymbols in Setswana-speaking children: an exploration

Bornman, J., Alant, E., & Du Preez, A. (2009)

Although the importance of iconicity in the learning of symbols has been widely acknowledged, there have been few systematic investigations into the influence of culture on the ratings of symbol iconicity. The purposes of this study were two-fold: to determine (a) the translucency ratings of specific Blissymbols as rated by 6- to 7-year-old Setswana-speaking children (one of South Africa's 11 official languages); and (b) whether the ratings changed after second and third exposures in order to determine the learnability of these symbols. This study is partially based on the study by Quist et al. (1998), which utilized Dutch and American participants. Thirty-four Setswana children were exposed to 93 selected Blissymbols. A 3-point semantic differential scale consisting of three faces accompanied each Blissymbol, without the written gloss. This procedure was repeated over a period of 3 days. The results indicated that the majority of Blissymbols were rated as having high translucency ratings. The research further demonstrated significant differences in translucency between first and second exposures, suggesting that learning of the symbols had occurred. The comparison between the results of the current study and the results reported in the Quist et al. study reveal that the translucency ratings of the majority of the selected Blissymbols ranged from moderate to high for all three studies, but that the distribution of symbols across the ratings appears to be different.

An exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656

Greco, V., Sloper, P., Webb, R., & Beecham, J. (2005)

A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.

An exploration of different models of multi-agency key worker services for disabled children: Effectiveness and costs. Research report 656.

Greco, V., Sloper, P., Webb, R., & Beecham, J. (2005)

A key worker has been described as a named person whom the family can approach
for advice about, and practical help with, any problem related to the disabled child.
Provision of 'key workers' or 'care coordinators' for disabled children and their families, working across health, education and social services, has often been recommended in policy guidance, most recently in the Children's National Service Framework. Up to now, research has shown that less than a third of families with severely disabled children have a key worker, but compared to those who do not have a key worker, those who do show benefits in terms of relationships with and access to services and overall quality of life. However, as more key worker services have been developed, different models of service and ways of working have proliferated and there has been no research on the outcomes for families of different types of services. This study aimed to explore the effectiveness of different models of multi-agency key worker services.

An investigation into parent perceptions of the needs of siblings of children with cancer

Sidhu, Reena, Passmore, Anne, Baker, D. (2005)

Although more is understood about childhood cancer's impact on the often forgotten siblings in the family, developing empirically tested interventions that support positive health outcomes is only just emerging. As family support is of key importance in sibling adjustment, further knowledge about their needs is crucial to the development of effective interventions. This investigation focused on examining parental perceptions regarding the concerns and issues for siblings of children with cancer and explored what support is helpful. Focus group methods were used to gather the data with probe questions developed from the literature and from clinical experience. Emergent topics generated were further analyzed using content analysis with 3 major topics identified: the universality of losses arising from the illness experience, behavioral challenges and adaptation, and parent-sibling communication. Parents also discussed helpful interventions. These are described and discussed in relation to the literature. The information obtained will contribute to developing interventions for siblings, specifically to produce a protocol for a therapeutic peer-support camp.

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.

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.

Ungdomsvård på hemmaplan. Idéerna, framväxten, praktiken

Forkby, Torbjörn (2005)

Juveniles who are rowdy, who commit crime, abuse drugs, have difficulty functioning in school or in the home are the subject of constant attention: from indignant voices in newspaper reports, to demands in parliament for action, all the way to the informal conversations at the lunch table and in the home in front of the television. This dissertation is about society's attempts to normalize them, in a time when institutional care has gained a bad reputation. All over the western world there are attempts to replace institutions with qualified non-institutional measures. In Sweden a rather broad range of activities has emerged under designations such as home-based solutions, intermediary care or simply alternatives to institutional care. Among these we can find both all-embracing and innovative endeavours and more limited expansions of established patterns of thought. Although there are numerous studies of individual ventures, often in the form of project evaluations, there are no approaches with an overall perspective on the field. This dissertation seeks to remedy this by studying ideas articulated when activities are planned and how daily life between juveniles and employees is formed in a typical home-based solution. These studies are conceptualized through a description of the development of juvenile care during the 20th century. The study is based on the methods of discourse analysis and focuses on how communication is shaped and given a specific function in an institutional order. The first study shows how the social worker as a rescuing subject is linked with the juvenile as an object needing rescue through the technology involved in the home-based solution. Four main forms of home-based care are identified in accordance with the way they relate to the mother organization (integrated – free-standing), and the way they handle problems that arise (ad hoc – a priori). The study of the special school "Pilen" analyses in detail how everyday life is shaped and maintained. Therapeutic work is perceived in the dissertation as actions accompanied by power with the intention of achieving dominance within a social space. In the special school it becomes evident how the employees' claims for power encounter the juveniles' counter-power, and how this is expressed in a reciprocal positioning game. The juveniles often have great potential to neutralize the employees' direct interventions. At the same time, they have little opportunity to change the social and cultural framework which dictates why they are there – and hence also little opportunity to avoid being captured in the category of "problem children". In this way the special school was simultaneously a sanctuary from the excessive pressures of ordinary school and a place of banishment from it, and from what is perceived as the reference of normality.

When more is not better: the role of cumulative risk in child behavior outcomes

Appleyard, K., Egeland, B., van Dulmen, M. H. M., & Sroufe, L. A. (2005)

Abstract
BACKGROUND:
Cumulative risk research has established the deleterious effects of co-occurring risk factors on child behavior outcomes. However, extant literature has not addressed potential differential effects of cumulative risk at different points in development and has left open questions about whether a threshold model or a linear risk model better describes the impact of cumulative risk on behavior outcomes. The current study examined the impact of cumulative risk factors (i.e., child maltreatment, inter-parental violence, family disruption, low socioeconomic status, and high parental stress) in early and middle childhood on child behavior outcomes in adolescence.
METHODS:
Using data from an ongoing longitudinal study of at-risk urban children (N=171), the cumulative effects of these five risk factors across early and middle childhood were investigated.
RESULTS:
The findings support the cumulative risk hypothesis that the number of risks in early childhood predicts behavior problems in adolescence. Evidence for a linear but not a threshold model of cumulative risk was found; the more risks present, the worse the child outcome. Moreover, the presence of multiple risks in early childhood continues to explain variations in predicting adolescent behavior outcomes even after including the effects of risk in middle childhood.
CONCLUSIONS:
The results support the need for comprehensive prevention and early intervention efforts with high-risk children, such that there does not appear to be a point beyond which services for children are hopeless, and that every risk factor we can reduce matters.

Vingklippt ängel

Berny Pålsson (2005)

I denna sjävbiografiska boken berättar Berny om sin uppväxt med en alkoholiserad pappa och de psykiska problem hon själv drabbades av. Man får följa hennes liv på olika behandlingshem och sjukhus och hennes kamp för att bli frisk.

Writing for recovery: A manual for structured writing after disaster and war

Yule, W., Dyregrov, A., Neuner, F., Pennebaker, J., Raundalen, M. & Van Emmerik, A. (2005)

This manual is easy to administer and group instructors with some basic knowledge of human responses to trauma and disaster can be selected and trained to instruct the adolescents on their writing. Together with UN organizations such as UNICEF or UNHCR, and/or with NGOs, local personnel can reach out to many adolescents by using this manual.

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.

Att ge syskon utrymme

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

Rapport från barn och ungdomshabiliteringen

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.

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´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.

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)

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.

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.

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.

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.

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.

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

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.

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.

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 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)

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. (2006)

Aim: To study the effects of alcohol and coping intervention among University students who have parents with alcohol problems. Methods: A total of 82 university students (56 women and 22 men, average age 25) with at least one parent with alcohol problems were included. The students were randomly assigned to one of three programs: (i) alcohol intervention program, (ii) coping intervention program, and (iii) combination program. All programs were manual based and individually implemented during two 2-h sessions, 4 weeks apart. This assessment contained both a face-to-face interview and six self-completion questionnaires; AUDIT, SIP, EBAC, coping with parents' abuse questionnaire, SCL-90 and ISSI. Follow-up interviews were conducted after 1 year. Results: All participants finished the baseline assessment, accepted and completed the intervention, while 95% of the students completed the 12-month follow-up assessment. The two groups that received alcohol intervention improved their drinking pattern significantly more than the group that did not receive alcohol intervention [change of standardized scores -0.27 (CI -0.53 to -0.03)]. The groups receiving coping intervention did not differ from the group not receiving coping intervention concerning their ability to cope with their parents' alcohol problems. Nor did they differ regarding changes in their own mental health or in their social interaction capacity. Conclusion: The intervention improved drinking patterns in adult children of alcoholics.

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.

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)

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.

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.

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 vara förälder till barn med funktionsnedsättning – erfarenheter av stöd och av att vara professionell stödjare

Lindblad, B.-M. (2006)

Avhandlingens övergripande syfte är att tolka och beskriva innebörder av stöd,
utifrån att vara förälder till barn med funktionsnedsättning och att vara professionella
stödjare. Datainsamling har skett i form av berättande intervjuer med
39 föräldrar (23 mödrar och 16 fäder) och 9 professionella (7 kvinnor, 2 män)
från olika verksamheter. Samtliga intervjuer har analyserats med hjälp av fenomenologisk
hermeneutisk metod.
Innebörder av att vara förälder till barn med funktionsnedsättning (studie I)
har tolkats som en medvetenhet om viktiga värden i livet. Barnet har ett inneboende
värde som en unik person och föräldrarna strävar efter att göra sitt
bästa för barnet. Denna strävan innebär att konfrontera oro, osäkerhet och
rädsla i vården av barnet och andra personers nedvärdering av barnet. I föräldrarnas
strävan att tillmötesgå barnets olika behov, ingår också att anpassa egna
behov efter barnets. Den fördjupade förståelsen av studiens resultat är, att det
handlar om en strävan att möjliggöra för barnet att leva ett gott liv.
Innebörder av att få stöd av professionella (studie II) har tolkats som att
föräldrar och barn blir bekräftade som värdefulla personer och att föräldrarna
uppnår trygghet och kompetens i föräldraskapet och får ett hopp för barnets
framtid. Erfarenheter av att inte få stöd, medför en kamp mot de professionella,
för att kräva det stöd som föräldrarna anser att de och barnet behöver.
Innebörder av att vara professionell stödjare (studie III), består av att ha
personlig filosofi, som är integrerat i sättet att vara och handla som stödjare.
Det innebär att vara trygg i hoppet om att det alltid går att göra något för att
hjälpa, genom att söka unika lösningar i den aktuella situationen. Tillit till för-
äldrar som partners och att få deras tillit, samt att möjliggöra för föräldrarna att
uppnå kompetens och trygghet i vården av sina barn är andra innebörder. Detta
har tolkats som en frihet från att vara bunden av byråkrati och prestige och en
möjlighet att vara äkta, följa sin filosofi och att vara i samklang med barn och
föräldrar.
Innebörder av informellt stöd (studie IV) har tolkats som en livsberikande
gemenskap, där barnet, innefattas i kärleksfulla relationer med närstående och
har en naturlig plats i samhället. Att som föräldrar kunna dela glädje, oro och
sorg med andra personer och att få möjlighet att uppleva lättnad och spontanitet
i det dagliga livet, är andra innebörder av informellt stöd. Helhetsförståelsen
av de fyra studierna är, att stöd av professionella i sin tur är ett stöd i föräldrars
etiska förpliktelse i deras strävan att möjliggöra för barnet att leva ett gott liv.
Informellt stöd betyder att föräldrar och barn är inneslutna i trofasta och berikande
relationer med andra.

Stress and well-being among parents of children with rare diseases: a prospective interventions study.

Dellve, Lotta, Samuelsson, Lena, Tallborn, Andreas, Fasth, Anders & Hallberg, Lillemor (2006)

This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention.
BACKGROUND:
Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders.
METHOD:
We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability.
RESULTS:
We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network.
CONCLUSION:
Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.

Stressors, quality of the child-caregiver relationship, and children’s mental health problems after parental death: the mediating role of self-system beliefs

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

Abstract
Investigated whether three self-system beliefs, fear of abandonment, coping efficacy, and self-esteem, mediated the relations of stressors and caregiver-child relationship quality with concurrent and prospective internalizing and externalizing problems in a sample of children who had experienced parental death in the previous 2.5 years. The cross-sectional sample consisted of 340 children ages 7-16 and their surviving parent/current caregiver; the longitudinal analyses employed a subset of this sample that consisted of 100 children and their parents/caregivers who were assessed at three time points. A multirater, multimethod measure of caregiver-child relationship quality and a multirater measure of children's mental health problems were used. The cross-sectional model supported a mediational relation for fear of abandonment, coping efficacy, and self-esteem. The three-wave longitudinal model showed that fear of abandonment at Time 2 mediated the relation between stressors at Time 1 and internalizing and externalizing problems at Time 3. Implications of these findings for understanding the development of mental health problems in parentally bereaved children and designing interventions for this at-risk group are discussed.

The kaleidoscope of communication: Different perspectives on communication involving children with severe multiple disabilities.

Olsson, C. (2006)

Avhandlingen består av sex publikationer om kommunikation och grava funktionsnedsättningar. Publikationerna presenterar ett teoretiskt ramverk, metodförslag och empiriska studier. Det teoretiska ramverket gäller generella aspekter på kommunikation och funktionsnedsättning medan de empiriska studierna fokuserar på barn i förskoleåldern vilka har utvecklingsstörning kombinerat med synnedsättning och/eller rörelsehinder. Syftet med avhandlingen är att samla kunskaper om hur barnen kommunicerar med sina vårdgivare, att analysera hur olika forskningsstrategier kan tillföra kunskaper från olika perspektiv och att utveckla modeller för att analysera och beskriva den dyadiska interaktionen.
Den teoretiska ramen tar upp hur barnets kommunikativa utveckling påverkas av multipla funktionsnedsättningar men också kommunikationspartners roll och vad som är betydelsefullt i åtgärdsarbetet. Den metodologiska ramen presenterar och jämför olika forskningsansatser och ett nytt sätt att studera och analysera kommunikation baserat på systemteori föreslås. I de empiriska studierna undersöks först sambanden mellan användning av kommunikativa funktioner och barnets funktionsnedsättningar samt hur situationen påverkar. Detta görs genom en kombinerad analysmodell som är både variabel- och person-inriktad. Sedan testas den föreslagna systemteoretiska analysen på två fallstudier av samspel mellan barn och vårdare.
Resultaten visar att användning av olika kommunikativa funktioner hade vissa samband med typ och grad av funktionsnedsättning hos de undersökta barnen men att det också fanns individuella mönster som skiljde sig från gruppresultatet. Det framkom dessutom att användningen av olika kommunikativa funktioner hade starkare samband med hur situationen såg ut än med vilka funktionsnedsättningar barnen hade. När det gällde undersökningarna av själva kommunikationsprocessen mellan barnet och den vuxne visade det sig att de båda kontinuerligt samordnande sig och att själva processen bestod av att tillsammans konstruera gemensamma ramar av samförstånd. Denna process genomgick kvalitativt olika faser som växlade mellan instabilitet och stabilitet. Användandet av systemteori som ett analysverktyg, gav upphov till tre modeller. Den första visar uppbyggnaden av en hierarkisk ordning av de gemensamma ramarna, den andra gäller dynamiken i processen och den tredje hur skiftet mellan olika faser sker i processen.
Diskussionen koncentreras kring hur resultaten från studierna tillsammans med de teoretiska aspekterna som framförts kan bidra till en erfarenhetsbaserad praxis. De huvudsakliga slutsatserna är att i ett kommunikativt samspel som involverar en person med flera grava funktionshinder så är kommunikationens mening något som konstrueras tillsammans av de båda parterna och därför kan kommunikation inte betraktas som en individuell kompetens kompetensen finns i dyaden.

The MetLife caregiving cost study: productivity losses to US business

MetLife (2006)

Since the release of the 1997 MetLife Study of Employer Costs for Working Caregivers, new research has helped us better understand the issues facing employed caregivers and their employers, new workplace programs have been developed and
more employees are reporting involvement in eldercare. In 2004, the National Alliance for Caregiving and AARP issued the findings of a survey of U.S. caregivers which forms the basis of this update of the costs to employers of caregiving employees.1 Findings are based on a Level of Burden Index, with Level 1 being the lowest in caregiving intensity and level 5 being the highest. Intense caregivers (Levels 3 – 5) are defined as doing personal care tasks (such as bathing, dressing, feeding as well as other tasks) for an average of 12 to 87 hours per week; levels 1 and 2 are caregivers providing, on average, fewer than 10 hours of care per week of less intense tasks, such as taking someone to a doctor's appointment or doing housework for them. This study estimates the productivity losses to U.S. business of employees who must make workplace accommodations as a result of caregiving responsibilities. These include costs associated with replacing employees, absenteeism, crisis in care, workday interruptions, supervisory time, unpaid leave, and reducing hours from full-time to part time.Since the release of the 1997 MetLife Study of Employer Costs for Working Caregivers, new research has helped us better understand the issues facing employed caregivers and their employers, new workplace programs have been developed and more employees are reporting involvement in eldercare. In 2004, the National Alliance for Caregiving and AARP issued the findings of a survey of U.S. caregivers which forms the basis of this update of the costs to employers of caregiving employees.1 Findings are based on a Level of Burden Index, with Level 1 being the lowest in caregiving intensity and level 5 being the highest. Intense caregivers (Levels 3 – 5) are defined as doing personal care tasks (such as bathing, dressing, feeding as well as other tasks) for an average of 12 to 87 hours per week; levels 1 and 2 are caregivers providing, on average, fewer than 10 hours of care per week of less intense tasks, such as taking someone to a doctor's appointment or doing housework for them. This study estimates the productivity losses to U.S. business of employees who must make workplace accommodations as a result of caregiving responsibilities. These include costs associated with replacing employees, absenteeism, crisis in care, workday interruptions, supervisory time, unpaid leave, and reducing hours from full-time to part time.

The Strengthening Washington D.C. Families Project: A Randomized Effectiveness Trial of Family-Based Prevention.

Gottfredson D, Kumpfer K, Polizzi-Fox D, Wilson D, Puryear V, Beatty P, et al. (2006)

The Strengthening Washington DC Families Project (SWFP) examined implementation fidelity and effectiveness when a selective, evidence-based prevention program was implemented with a sample of 715 predominantly African American families across multiple settings in an urban area. Using a true experimental design, this study reports on the differential effectiveness of four conditions (child skills training only, parent skills training only, parent and child skills training plus family skills training, and minimal treatment controls) in reducing child antisocial behavior and its precursors. Major challenges with recruitment and retention of participants and uneven program coverage were documented. No statistically significant positive effects for any of the program conditions were observed, and a statistically significant negative effect on child reports of Negative Peer Associations was observed for children of families assigned to the family skills training condition. Two marginally significant findings were observed: Child's positive adjustment favored families assigned to family skills training condition relative to minimal treatment and child training only, and family supervision and bonding was lower for children in family skills training than in the other three conditions. Hypotheses about potential explanations for the weaker than expected effects of this program are offered, as are thoughts about the infrastructure necessary to successfully implement family strengthening programs and the future of prevention science.

The Impact of the Picture Exhange Communication System on Requesting and Speech Development in Preschoolers with Autism Spectrum Disorders and Similar Characteristics

Ganz, Jennifer, Simpson, Richard & Corbin-Newsome, Jawanda (2008)

By definition children with autism spectrum disorders (ASD) experience difficulty understanding and using language. Accordingly, visual and picture-based strategies such as the Picture Exchange Communication System (PECS) show promise in ameliorating speech and language deficits. This study reports the results of a multiple baseline across participants investigating the implementation of the PECS with three preschool children with characteristics of ASD. The first four phases of PECS were taught to the participants: basic picture exchange, increasing distance use of PECS, discriminating among a variety of pictures, and communicating in sentences composed of pictures. Relative to the impact of PECS's implementation in providing the participants with a functional communication system, word approximations, and intelligible word and phrase use, results indicated that two of the three participants mastered PECS. However, participants did not significantly increase in use of word approximations and intelligible words.

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 social connectedness of older adults: A national profile

Cornwell, B (2008)

For decades, scholars have wrestled with the notion that old age is characterized by social isolation. However, there has been no systematic, nationally representative evaluation of this possibility in terms of social network connectedness. In this paper, the authors develop a profile of older adults' social integration with respect to nine dimensions of connectedness to interpersonal networks and voluntary associations. The authors use new data from the National Social Life, Health, and Aging Project (NSHAP), a population-based study of non-institutionalized older Americans aged 57-85 conducted in 2005-2006. Findings suggest that among older adults, age is negatively related to network size, closeness to network members, and number of non-primary-group ties. On the other hand, age is positively related to frequency of socializing with neighbors, religious participation, and volunteering. In addition, it has a U-shaped relationship with volume of contact with network members. These findings are inconsistent with the notion that old age has a universal negative influence on social connectedness. Instead, life course factors have divergent consequences for different forms of social connectedness. Some later life transitions, like retirement and bereavement, may prompt greater connectedness. The authors close by urging increased dialogue between social gerontological and social network research

They Won't Come": Increasing Parent Involvement in Parent Management Training Programs for At-Risk Youths in Schools

Ouellette, P. M. and D. Wilkerson (2008)

The absence of parents from schools is seen as an important factor related to the significant number of adolescents at risk of school failure. Effective parenting is known to be a key protective factor for adolescents at risk for school failure and other maladaptive developmental outcomes. While evidence-based parent management training models exist, their use has been limited by problems regarding recruitment and retention when services are offered through traditional means. We review the literature on parent involvement in schools, the effectiveness of parent education programs, and mutual aid activities. Logistical barriers to parent participation in parent management training programs and other school-related activities are examined, and a strategy using twenty-first-century technology will be described as a means to increase parent involvement in schools. (Contains 1 table.)

Three persons with multiple disabilities accessing environmental stimuli and asking for social contact through microswitch and VOCA technology

Lancioni, G. E., O'Reilly, M. F., Singh, N. N., Sigafoos, J., Oliva, D., & Severini, L. (2008)

BACKGROUND:
Direct access to environmental stimuli and opportunity to ask for social contact/attention may be considered highly relevant objectives for persons with multiple disabilities. We assessed the possibility of enabling three of these persons (two children and one adolescent) to combine two microswitches (for accessing environmental stimuli) and a Voice Output Communication Aid (VOCA), which allowed them to ask for caregiver's attention.
METHODS:
Initially, the participants were required to use each of the two microswitches individually and then together. Thereafter, they were taught to use the VOCA. Eventually, the VOCA was available together with the microswitches, and the participants could use any of the three.
RESULTS:
The results, which support preliminary data on this topic, showed that all participants (1) were able to operate the two microswitches as well as the VOCA; and (2) used all three of them consistently when they were simultaneously available.
CONCLUSIONS:
Teaching persons with multiple disabilities to combine a VOCA with conventional microswitches may enrich their general input, emphasize their active social role and eventually enhance their social image.

Three persons with multiple disabilities accessing environmental stimuli and asking for social contact through microswitch and VOCA technology

Lancioni, G. E., O'Reilly, M. F., Singh, N. N., Sigafoos, J., Oliva, D., & Severini, L. (2008)

BACKGROUND:
Direct access to environmental stimuli and opportunity to ask for social contact/attention may be considered highly relevant objectives for persons with multiple disabilities. We assessed the possibility of enabling three of these persons (two children and one adolescent) to combine two microswitches (for accessing environmental stimuli) and a Voice Output Communication Aid (VOCA), which allowed them to ask for caregiver's attention.
METHODS:
Initially, the participants were required to use each of the two microswitches individually and then together. Thereafter, they were taught to use the VOCA. Eventually, the VOCA was available together with the microswitches, and the participants could use any of the three.
RESULTS:
The results, which support preliminary data on this topic, showed that all participants (1) were able to operate the two microswitches as well as the VOCA; and (2) used all three of them consistently when they were simultaneously available.
CONCLUSIONS:
Teaching persons with multiple disabilities to combine a VOCA with conventional microswitches may enrich their general input, emphasize their active social role and eventually enhance their social image.

Tidig AKK : stöd för stora och små

Heister Trygg, Boel (2008)

Boken riktar sig framför allt till personal som arbetar med små och stora barn som fungerar på tidig kommunikativ nivå / tidig utvecklingsnivå.

Transitions in men's caring identities: experiences from home-based care to nursing home placement.(Report).

Eriksson, H. and J. Sandberg (2008)

To purchase or authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1748-3743.2007.00092.x Byline: Henrik Eriksson, Jonas Sandberg Keywords: caring; gender; informal care; nursing home Abstract: Objectives. The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home. Background. Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective. Design. A qualitative constructivist approach was adopted for this study. Participants. Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home. Methods. Interviews were analysed with a constructivist approach. Results. The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship. Conclusions. The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men's caring activities and to make them sustainable, we believe that men in an informal caring relationship need support. Relevance to clinical practice. Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men's lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers. Article History: Submitted for publication: 21 November 2006 Accepted for publication: 25 June 2007 Article note: Henrik Eriksson, Department of Caring and Public Health Sciences, Malardalen University, Box 325, 631 05, Eskilstuna, Sweden, Telephone: +46 16 153747, E-mail: henrik.eriksson@mdh.se

Transitions into informal caregiving and out of paid employment of women in their 50s

Berecki-Gisolf J, Lucke J, Hockey R, Dobson A. (2008)

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving

Transitions into informal caregiving and out of paid employment of women in their 50s

Berecki-Gisolf J, Lucke J, Hockey R, Dobson A. (2008)

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving

Treating paternal drug abuse using Learning Sobriety Together: Effects on adolescents versus children

Kelley ML, Fals-Stewart W. (2008)

The focus of this study was whether couples-based treatment for substance abuse had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus child siblings living in their homes. Couples took part in a couples-based treatment for substance abuse that combines Behavioral Couples Therapy and individual counseling (i.e., Learning Sobriety Together). During a 17-month assessment period, the relationship between parents' functioning (i.e., fathers' drug use as determined by percent days abstinent and parents' dyadic adjustment) as rated by mothers, fathers, and children's teachers and internalizing behavior (as rated by mothers' only) was stronger for children than their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drug use and improve couple functioning may reduce internalizing and externalizing symptoms for children in their homes; however, adolescents may need more intensive interventions to address internalizing and externalizing symptoms.

Keywords: Children of drug abusers, Couples therapy

Understanding self-determination and families of young children with disabilities in home environments

Brotherson MJ, Cook CC, Erwin EJ, Weigel CJ. (2008)

This article is about emergent self-determination for young children with disabilities in their home environments. The purpose of this study was to better understand family and home characteristics and how they influence the ways in which families can support the development of self-determination for their children with disabilities. Thirty families of young children with disabilities were interviewed, and their homes were systematically observed. Using a grounded theory design, an emergent model was developed that examined family and home context and the influence of context on the strategies that families used to support self-determination. Future research and practice implications of this research for supporting families are discussed.

Understanding the construct of self-determination: Examining the relationship between the Arc´s self-determination scale and the American institutes for research self-determination scale.

Shogren KA, Wehmeyer ML, Palmer SB, Soukup JH, Little TD, Garner N, et al. (2008)

Since the early 1990s, attention has been focused on the importance of self-determination in the education of students with disabilities. The purpose of this study was to further our understanding of the construct of self-determination by examining the relationship between the Arc's Self-Determination Scale and the American Institutes for Research (AIR) Self-Determination Scale student and educator versions. Using structural equation modeling, we found that the theoretical structure of the Arc's Self-Determination Scale and the AIR Self-Determination–Student Scale was supported by the data, while the proposed theoretical structure of the AIR Self-Determination–Educator Scale was not. The analyses suggested that each of the measures of self-determination was measuring a different aspect of the self-determination construct (i.e., it was not possible to create a higher order factor comprising each of the assessments); thus issues related to the goals of the research and the underlying theoretical perspective of each measure must be considered when determining the most appropriate measure of self-determination in research and practice. Implications and future research directions are discussed.

Urinary incontinence and use of pads – clinical features and need for help in home care at 11 sites in Europe

Wergeland Sørbye, L., Finne-Soveri, H., Ljunggren, G., Topinkova, E., Garms-Homolova, V., Jensdóttir, A. B., & Bernabei, R. (2008)

AIM:
The aim of this study was to obtain evidenced-based knowledge about older persons in home care; we conducted a population-based study at 11 sites in Europe (2001/2002). This article focuses on urinary incontinence and need for help in home care.
METHODS:
A sample of 4010 respondents 65 years or older were assessed by the Resident Assessment Instrument for Home Care. Urinary incontinence was defined as leakage once a week or more including use of catheters.
RESULTS:
A total of 1478 individuals had urinary incontinence, 45% men and 47% women. The use of pads ran from 29% to 52% between the sites. The associates of urinary incontinence were: moderate or severe cognitive impairment, dependency in toileting and other activities of daily living compared with less impaired; urinary infections, obesity and faecal incontinence. Caregivers to persons with urinary incontinence reported burden or stress more often then carers to nonurinary incontinence individuals (OR = 2.2, 95% CI 1.8-2.7).
CONCLUSIONS:
To enable older people with incontinence to stay at home with a better quality of life, they need caring assistance during toileting on a regular basis.

Use of Writing with Symbols 2000 to Facilitate Emergent Literacy Development

Parette, H., Boeckmann, N & Hourcade, J. (2008)

This paper outlines the use of the Writing with Symbols 2000 software to facilitate emergent literacy development. The program's use of pictures incorporated with text has great potential to help young children with and without disabilities acquire fundamental literacy concepts about print, phonemic awareness, alphabetic principle, vocabulary development, and comprehension. The flexibility and features of the software allow early childhood professionals to create a variety of early literacy tools for the classroom, including worksheets, storybooks, and interactive activities.

Use of Writing with Symbols 2000 to Facilitate Emergent Literacy Development

Parette, H., Boeckmann, N & Hourcade, J. (2008)

This paper outlines the use of the Writing with Symbols 2000 software to facilitate emergent literacy development. The program's use of pictures incorporated with text has great potential to help young children with and without disabilities acquire fundamental literacy concepts about print, phonemic awareness, alphabetic principle, vocabulary development, and comprehension. The flexibility and features of the software allow early childhood professionals to create a variety of early literacy tools for the classroom, including worksheets, storybooks, and interactive activities.

Use of Writing with Symbols 2000 to Facilitate Emergent Literacy Development

Parette, H., Boeckmann, N & Hourcade, J. (2008)

This paper outlines the use of the Writing with Symbols 2000 software to facilitate emergent literacy development. The program's use of pictures incorporated with text has great potential to help young children with and without disabilities acquire fundamental literacy concepts about print, phonemic awareness, alphabetic principle, vocabulary development, and comprehension. The flexibility and features of the software allow early childhood professionals to create a variety of early literacy tools for the classroom, including worksheets, storybooks, and interactive activities.

Utsatt barndom – olika vuxenliv. Ett longitudinellt forskningsprojekt om barn i samhällsvård

Andersson, G. (2008)

Boken handlar om de barn som placerades på barnhem i en
storstad någon gång under en tvåårsperiod på 1980-talet och var
0–4 år vid tiden för inskrivningen och stannade där mer än en
månad. De första två uppföljningsstudierna gjordes tre och nio
månader efter det att barnen lämnat barnhemmet. Därefter har
barnen följts upp ytterligare fem gånger, 5, 10, 15, 20 och 25 år
efter den tidiga barnhemsvistelsen. Det är 26 barn och det finns
knappast något bortfall från tidig barndom till vuxen ålder.
Resultatredovisningen är uppdelad i tre kapitel. Det första
ger glimtar från socialtjänstens dokumentation och mödrarnas
berättelser om tiden före placeringen och orsakerna till barnens
placering på barnhemmet. Där framgår också barnens reaktioner
på separation och deras anknytnings- och anpassningsprocess
under tiden på barnhemmet och den närmast efteråt, hemma
eller i familjehem. Det andra resultatkapitlet handlar om barnens
placeringshistoria under hela barndomen. De flesta barnen i undersökningsgruppen
kom nämligen förr eller senare till familjehem
och några har även erfarenhet av ungdomsinstitutioner. Instabilitet
till följd av sammanbrott i placeringar eller återplaceringar
ses som ett allvarligt bekymmer för barn i samhällsvård. I de nu
vuxna barnens tillbakablick varierar erfarenheterna. Det tredje
resultatkapitlet handlar om social anpassning i vuxen ålder i
termer av utbildning, arbete och laglydighet. Liksom i annan
forskning framgår det här att färre har gymnasieutbildning än
jämnåriga i befolkningen i stort. Det framgår också att skälen
varierar, men de som klarat gymnasiet utan större problem har
också i större utsträckning en stabil arbetssituation. Kapitlet
bygger i stor utsträckning på de unga männens och kvinnornas
egna berättelser och är rikt på citat. Det är inget stort kvantitativt
material, men det går att räkna procent. Andelen som i vuxen
ålder kan räknas till de laglydiga är 70 procent och 50 procent
har en stabil arbetssituation.

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