Bibliotek

ABSTRACT
Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan's perspective on the doing of family life, and Hochschild's analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants' sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

Denna rapport är ett led i Attentions arbete för att uppmärksamma och förbättra situationen för personer med neuropsykiatriska funktionsnedsättningar. Rapporten redogör för en enkätundersökning genomförd i april 2021.

Abstract
Background
Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.

Methods
The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD.

Results
In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.

Conclusions
Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.

Doktorsavhandling

This thesis aims at contributing to the understanding of digital inequalities among older people, by studying the involvement of older people in research on digital technologies. Some mechanisms driving old age digital inequalities are well known. For instance, people with lower social positions tend to have lower digital skills, to face technology accessibility and affordability issues, and, thus, to engage less with digital technologies compared to their counterparts. However, less attention has been paid to issues related to research and development of digital technologies, such as the involvement of older people in research evaluating new digital technologies. Previous studies indicate that participants and non-participants in research are different one another, with the former being younger, reporting higher educational levels, having better health status than the non-participants. This may bias research outcomes and lead to incorrect conclusions on the utility of digital technologies. The objective of this thesis is to investigate the link between the involvement of older people in digital technology evaluations and the research outcomes. Healthcare is used as exemplifying context in which digital technologies are used. In Study I, participation in digital health research is conceptualised, and a research tool for identifying and measuring selective participation is developed. In Study II and III, factors associated with participation in two digital health intervention studies are analysed. In Study IV, the impact of selective participation on the research outcomes of a digital health study is identified, measured, and corrected. Thesis findings show that participation of older people in digital health research is selective by age, gender, health status, job level, and digital skills, and can indicate a mechanism for digital inequalities. Selective participation biases research outcomes by overemphasising the intervention effects of the over-represented groups over those among the under-represented groups. It can cause an overestimation of the positive effects of digital health technologies due to the under-representation of those groups who do not benefit from the intervention. This promotes digital technologies which increase exclusion risks for some groups of older people and reinforce old age digital and social inequalities. Weighting procedures can be used for mitigating the impact of this mechanism on the research outcomes of intervention studies on digital technologies.

Barn vars förälder dömts till fängelse klarar sig sämre i skolan och har en ökad risk för egen kriminalitet i tonåren. Som unga vuxna har de svårare att etablera sig på arbetsmarknaden, visar en ny IFAU-rapport.

Rapporten är en sammanfattning av IFAU Working paper 2019:24

Syftet med denna kartläggning är att beskriva hur många barn som är närstående till någon som
har allvarlig fysisk/psykisk sjukdom/funktionsnedsättning, missbruk eller plötsligt avlidit. Vi
beskriver också hur barn som närstående har det inom områden som rör skola, hälsa, riskbeteenden ANT (alkohol, narkotika och tobak), socialt stöd samt trivsel och framtidstro. Målet med
rapporten är att uppmärksamma livsvillkoren hos barn som närstående i Sörmland.

Abstract
Combining work and care can be very challenging. If not adequately supported, carers' employment, well- being and relationships may be at risk. Technologies can be potential solutions. We carried out a scoping review to find out what is already known about technologies used by working carers. The search included academic and grey literature published between January 2000 and June 2020. Sixteen relevant publications were analysed and discussed in the context of the broader discourse on work-care reconciliation. Technologies discussed can be classified as: (a) web- based technologies; (b) technologies for direct communication; (c) monitoring technologies; and (d) task-sharing tools. Technologies can help to make work-care reconciliation more manageable and alleviate psychosocial and emotional stress. General barriers to using technology include limited digital skills, depending on others to use technol-ogies, privacy and data protection, cost, limited technological capabilities, and limited awareness regarding available technologies. Barriers specific to some technologies include work disruptions, limited perceived usefulness, and lacking time and energy to use technologies. More research into technologies that can address the needs of working carers and how they are able to use them at work is needed.

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

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.

Det är 80-tal och Philomène och hennes pappa lever ett okonventionellt liv fyllt av kultur och kärlek. Men pengarna är oftast slut. Pappa är Izzy Young, legendaren som upptäckte Bob Dylan och vars Folklore Center i New York utgjorde scen för musiker och poeter som Patti Smith och Allen Ginsberg.

Trettio år senare sjunker Izzy allt djupare in i demens.

En gripande uppväxtskildring och en berättelse om en far och dotter som vägrar släppa taget om livet och varandra.

Abstract [en]
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.

Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.

Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.

Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention's platform and the choice of content.

Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.

Abstract [en]
The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving "uncooperative" disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving

Skriften Planera framtiden – redan idag är ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga. I skriften finns berättelser från familjer, yrkesverksamma och specialister.

Skriften kan vara ett stöd för personer som lever nära någon med flerfunktionsnedsättning. Den kan också användas som underlag för diskussion i olika verksamheter och utbildningar.

Sammanfattning:
Psykisk ohälsa ses ofta som en naturlig del av åldrandet – något
att acceptera snarare än att förebygga eller behandla. Psykisk
ohälsa i hög ålder kan dock ofta vara konsekvenser av sociala
förändringar och försämrad hälsa och funktionsförmåga. Denna
rapport syftar till att ge en översikt av forskningsläget gällande
psykisk ohälsa bland äldre personer; dess förekomst, grupper
som har ökad risk för psykisk ohälsa samt förebyggande och
behandlande arbete. I den här rapporten fokuserar vi på åldersgrupper över 65 år – en grupp med stor variation i hälsa och
levnadsförhållanden.

Abstract
The aim of this exploratory cross-sectional study was to investigate the experiences of relatives of individuals with severe mental illness with and without participation in patient-appointed Resource Group Assertive Community Treatment (RACT). A total of 139 relatives (79 with and 60 without RACT) completed the Family Involvement and Alienation Questionnaire, the Burden Inventory for Relatives of Persons with Psychotic Disturbances, and the family version of the Inventory of Stigmatizing Experiences. We found that relatives participating in RACT experienced a more positive approach from the healthcare professionals, as well as a lower degree of alienation from the provision of care. Relatives who did not participate in RACT were more afraid that their ill next of kin would hurt someone. No other differences in family burden were found. Experiences of family stigmatization were similar in both groups. In conclusion, participating in patient-appointed RACT may contribute to a higher level of satisfaction for relatives in their encounter with healthcare professionals and a more positive alliance. Implementation of RACT in new settings would require adaptation to local conditions to facilitate cooperation between healthcare staff and other relevant services. Staff training focuses on the case manager function and needs assessment, as well as how to create an alliance with the patient and his/her relatives.

Sammanfattning
The Family Model är ett familjeorienterat verktyg där kliniker med hjälp av en visuell modell tillsammans med familjen kartlägger hur psykisk ohälsa påverkar och påverkas av relationerna i familjen och omständigheterna omkring den. Modellen har utvecklats av Adrian Falkov, barn- och ungdomspsykiater i Australien. Syftet med studien är att undersöka om modellen kan vara användbar i Sverige. Studien består av två delar. I den första delen fick medarbetare i barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård sätta sig in i modellen genom att bland annat gå en webbkurs, eventuellt prova modellen i praktiken (frivilligt) och sedan delge sin uppfattning i en enkät. Sammanfattningsvis finner man modellen användbar, både i verksamheter som vill utveckla ett tydligare familjeperspektiv i sitt arbete och som komplement till andra interventioner, som många av deltagarna är förtrogna med. Några menar att de redan har välfungerande metoder som är bättre anpassade till deras arbete med t.ex. späd- och småbarn och deras föräldrar. Det finns också en önskan att den engelska webbkursen och den visuella modellen skall översättas och anpassas till svenska. I den andra delen av studien gick vi igenom ett antal styrdokument för vård av barn och vuxna med psykisk ohälsa för att se vilken vägledning dessa ger för arbetet med familjer med psykisk ohälsa. Många styrdokument tar upp arbete med familj och närstående till patienten, men detta sker oftare ur ett individorienterat än ur ett familjeorienterat perspektiv. Implementering och utvärdering av familjeorienterade interventioner vid psykisk ohälsa framstår som en fortsatt angelägen uppgift.

OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.

METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare.
Aims: The overall aim of this thesis was to illuminate perceptions of everyday life, family support from mental healthcare professionals, and quality of community mental healthcare from the perspectives of families living with mental illness. A further aim was to elucidate families' and mental healthcare professionals' experiences of Family Centered Support Conversations (FSCS) in community mental healthcare.
Methods: A descriptive design with qualitative and quantitative methods was used. Qualitative data were collected by means of family interviews with seven families living with a young adult suffering from mental illness (n= 17 participants) (I, III) and individual interviews with mental healthcare professionals (n= 13) (IV). The data were analyzed using phenomenography (I, III, IV). Quantitative data were collected from adult patients (n= 43) suffering from mental illness and family members (n=43) (II) in community mental healthcare using the Family Perceived Support Questionnaire (ICE-FPSQ), the Quality in Psychiatric Care – Community Out -Patient (QPC-COP) and Out-Patient Next of Kin (QPCCOPNK). The data were analyzed using non- parametric statistics (II).
Main findings: Families balanced between letting go and enabling the young adult to become independent while remaining close to help him/her complete education, work and have a social life (I). The young adults tried not to be a burden, but still longed for family members to understand them (I). Family members intervened as best they could (I), but felt there was a lack of support and respect and no invitation to take part in the mental healthcare
(II). Family members reported significantly lower quality of community mental healthcare than patients (II). Healthcare professionals held back information although young adult patients had consented to give family members insight (I). Athough the FCSC was experienced as new and uncomfortable, the families also regarded it as beneficial and safe
(III). It facilitated an opportunity to share and reflect on the family's beliefs, and enabled them to find new beliefs and opportunities in everyday life (III). The FCSC helped healthcare professionals to structure the involvement of family members as a complement to care as usual, although there was still a need to adjust the intervention (IV).
Conclusions: Young adults suffering from mental illness are reliant on support from family to manage everyday life. Mental healthcare professionals play an important role in facilitating a safe environment for sharing beliefs and bringing strengths and resources to the front seat in family-centered support conversations. When family are included as part of the mental healthcare team, this enhances their ability to be supportive.

Försvarsmakten finansierar sedan 2018 familjehelger för utlandsveteraner och deras familjer som en del av personal- och anhörigarbetet. Familjehelgerna genomförs av anhörignätverket Invidzonen i syfte att stötta och informera föräldrar där den ena föräldern har varit, är utsänd eller kommer att sändas ut på ett internationellt uppdrag.

Nationellt kompetenscentrum anhöriga (Nka) har på uppdrag av Försvarsmakten genomfört en utvärdering av familjehelgerna, vilket redovisas i denna rapport. Fokus för utvärderingen har varit måluppfyllelse och förväntade effekter för deltagande familjer.

Abstract
Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/signifcant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that afects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers' perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using frst-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were
either aged 60+ years themselves or were caring for someone who was aged 60+ years.
Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic signifcantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: 'family motivation' and 'the greater good motivation'. These, according to our results, almost equally valued dimensions, described the difering reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers' perceived motivations and obstacles regarding carer involvement in research. Paying attention to the difering motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact.

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.

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.

BACKGROUND:
The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling.
METHOD:
As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in-depth, phenomenology-based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory.
RESULTS:
Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well-being, exchanging experiences, social support and dealing with the outside world.
CONCLUSIONS:
This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience.

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.

Författare: Karin Stephansson & Robert Schelin
Syfte: Att undersöka hur det kan vara att växa upp med en bror eller syster med diagnosen
adhd, hur livssituationen/syskonskapet hanterats, samt hur de har påverkats och hur det
eventuellt fortsätter att påverka dem i vuxenlivet. Syftet var även att undersöka syskonens
upplevelser och behov av socialt stöd under uppväxten.
Frågeställningar:
• Vilka upplevelser finns hos personer som vuxit upp med ett syskon med adhd?
• Hur upplever syskon att de har påverkats av att växa upp med en bror eller syster med
adhd?
• Hur har syskonskapet hanterats?
• I vilken utsträckning finns det behov av socialt stöd under uppväxten för syskon till
barn med adhd?
Metod: Studien är kvalitativ och bygger på intervjuer med åtta personer som vuxit upp med
ett eller flera syskon med diagnosen adhd. Intervjupersonerna består av både kvinnor och män
i åldrarna 17- 29 år.
Resultat: Resultatet visade att samtliga syskon upplevt att syskonrelationen och
familjesituationen innehållit mycket bråk som enligt intervjupersonerna var mer än vanligt
syskonbråk. Samtliga intervjupersoner ansåg att det fått ta ett stort ansvar under uppväxten.
Detta har upplevts som både positivt och negativt. Det har gjort dem ansvarsfulla men några
kände även att det lagts för mycket ansvar på dem och detta alldeles för tidigt i relation till
deras dåvarande ålder. Studien kunde påvisa en koppling mellan kommunikationen inom
familjen och upplevelsen av att ha vuxit upp med ett syskon med adhd. De intervjupersoner
som ansåg att kommunikationen inom familjen varit god och öppen beskrev upplevelser och
erfarenheter av syskonskapet som mer positivt än de intervjupersoner som ansåg att
kommunikationen inom familjen varit bristfällig.
Nyckelord: Attention Deficit/Hyperactivity Disorder (adhd), syskon, coping, socialt stöd,
systemteori

Internet-based psychotherapeutic interventions have been used for more than a decade, but no comprehensive review and no extensive meta-analysis of their effectiveness have been conducted. We have collected all of the empirical articles published up to March 2006 (n = 64) that examine the effectiveness of online therapy of different forms and performed a meta-analysis of all the studies reported in them (n = 92). These studies involved a total of 9,764 clients who were treated through various Internet-based psychological interventions for a variety of problems, whose effectiveness was assessed by different types of measures. The overall mean weighted effect size was found to be 0.53 (medium effect), which is quite similar to the average effect size of traditional, face-to-face therapy. Next, we examined interacting effects of various possible relevant moderators of the effects of online therapy, including type of therapy (self-help web-based therapy versus online communication-based etherapy), type of outcome measure, time of measurement of outcome (post-therapy or follow-up), type of problem treated, therapeutic approach, and communication modality, among others. A comparison between face-to-face and Internet intervention as reported on in 14 of the studies revealed no differences in effectiveness. The findings of this meta-analysis, and review of additional Internet therapy studies not included in the meta-analysis, provide strong support for the adoption of online psychological interventions as a legitimate therapeutic activity and suggest several insights in regard to its application. Limitations of the findings and recommendations concerning Internet-based therapy and future research are discussed.

A meta-analysis of 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.

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

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.

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

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

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

Rapport från barn och ungdomshabiliteringen

Doktorsavhandling

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

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

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

Sammanfattning
Denna rapport undersöker hur vuxna barns arbetsutbud och hälsa påverkas av att ha en åldrande förälder i behov av omvårdnad. I uppsatsen undersöks det ökade omvårdnadsbehovet dels under föräldrars sista år i livet och dels som följd av en stroke. Effekten av att ha en åldrande förälder med förhöjt omvårdnadsbehov studeras genom att jämföra söners och döttrars sysselsättning, inkomst och hälsa före och efter det att föräldern dör respektive får en stroke. Studien visar att sysselsättning och inkomst sjunker något under förälderns sista år i livet, men att effekten är störst under det år, och året efter, förälderns död. Det finns också tecken på att döttrars sjukskrivning ökar det år föräldern avlider. Däremot påverkas inte sysselsättning och inkomst bland vuxna barn till föräldrar som drabbas av stroke. Det finns heller inga tydliga könsskillnader i effekterna. Sammantaget tyder resultaten på förälderns omsorgsbehov har en begränsad påverkan på vuxna söners och döttrars arbetsutbud.

There is considerable research and clinical evidence that children who experience loss become traumatized. The results of traumatization include sleeping problems, for example difficulties in initiating sleep and sleep terrors. Psychological intervention programmes, including hypnotherapy, have been shown to have some success in helping children to overcome their sleeping problems. In the present study, a new paradigm qualitative methodology was used in which a small group of children were taught self-hypnosis to manage their sleep difficulties. Within the group, the children's experiences of utilizing self-hypnosis at home were discussed, and a consensus reached concerning its effects. Complementary data were collected through interviews with caregivers and by completion of the Southampton Sleep Management Schedule (Bartlet and Beaumont, 1998). From the study it was concluded that young children can be taught self-hypnosis in order to manage their sleeping problems effectively. Furthermore, the present study demonstrated that children can be involved in a collaborative research group.

Ett barns hälsa och välbefinnande bestäms av så mycket mera än att vara fri från sjukdom. Världshälsoorganisationen (WHO) beskriver hälsa som fysiskt, psykiskt och socialt välbefinnande. Detta visar att ett barn med funktionsnedsättning kan må bra om det ges förutsättningar att fungera i de miljöer där barnet vistas regelbundet. Ett barns vardagsfungerande kan bedömas och beskrivas på ett allsidigt sätt med stöd av WHO:s hälsoklassifikation Internationell klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY. Den bidrar med en modell som fokuserar på funktionella beskrivningar av barnets vardagssituationer som ett nödvändigt komplement till en diagnos. Eftersom en diagnos aldrig kan ge information om ett individuellt barns fungerande, behövs det funktionella perspektivet vid planering av åtgärder som kagöra ett barn mera delaktigt i olika aktiviteter. Socialstyrelsen förordar en ökad användning av klassifikationen, vilket har gjort att många verksamheter, som arbetar med barn och ungdomar, utvecklar arbetsmodeller som bygger på ICF-CY. Därför behöver föräldrar, liksom alla andra som finns runt ett barn med funktionsnedsättning, kunskap om den värdegrund som bildar bas för hälsoklassifikationen.
Kunskapsöversikten vägleder läsaren genom ICF-CY och lyfter fram exempel på hur den kan bidra till en överblick över ett barns hälsa och välbefinnande. Vägledningen vill underlätta samverkan genom att belysa hur ICF-CY kan bli en gemensam struktur och ett gemensamt språk för formulering av ett barns problem och behov ur olika synvinklar. Även om de exempel som beskrivs fokuserar på barn, är värdegrunden och innehållet i klassifikationen lika användbart för vuxna. Vägledningen är inte tänkt att läsas i ett streck från början till slut. Innehållet är ordnat i flera delar så att läsaren först ska få en bakgrund med en övergripande information om ICF-CY för att sedan lotsas allt djupare in i såväl modellen som klassifikationen. I slutet presenteras hur klassifikationen kan användas för att definiera ett barns problematik. Förhoppningen är att läsaren ska kunna ta fram skriften och hitta de avsnitt som kan ge ett stöd för att beskriva ett barns aktuella situation och behov inför en habiliteringsplanering, upprättandet av åtgärdsprogram, en vårdbidragsansökan eller vid övergången från en skola till en annan. Den kan på det viset ses som ett uppslagsverk i ämnet barn och ungdomars hälsa och välbefinnande, eller kanske lika gärna, i barn och ungdomars vardagsfungerande.

Den mänskliga tillvaron är full av påfrestningar – motgångar, krav, konflikter och olika slags problem som måste lösas. Vad är det som gör att en del av oss klarar av svåra påfrestningar med hälsan i behåll – och till och med kanske växer och vidareutvecklas av det? Detta är den fråga Antonovsky ställer. Hans svar är att motståndskraften beror på vår känsla av sammanhang, KASAM (på engelska SOC, Sense of Coherence), dvs den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar. Han diskuterar hur denna känsla byggs upp hos barn och vuxna och på vilket sätt den inverkar på vår hälsa. Han presenterar ett testinstrument för att mäta den och han redogör för olika forskningsresultat som stöder hans tes om dess stora betydelse. Boken gavs ut 1991 i Sverige och har sålt i 40.000 exemplar sedan dess. Den har betytt mycket för vändningen inom medicinsk forskning, från en total koncentration på sjukdomsförloppet och patogenesen till ett studium av friskfaktorerna och salutogenesen.

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.
PinterestTwitter

För att förbättra särskilt utsatta barns situation fick hälso- och sjukvården den 1 januari 2010 en skyldighet att beakta barnens behov av råd, stöd och information. Det gäller om en förälder har en psykisk störning eller funktionsnedsättning, en allvarlig fysisk sjukdom, är missbrukare eller oväntat avlider. Bestämmelserna finns i HSL och LYHS.

Denna hälsoekonomiska studie är en beräkning av samhällets årliga kostnader för fetalt alkoholsyndrom (FAS) i Sverige. Att dricka alkohol under graviditeten kan skada fostrets utveckling, framför allt utvecklingen av dess hjärna, och kan leda till allvarliga och livslånga funktionsnedsättningar och funktionshinder. FAS ör en medicinsk diagnos som beskriver de skador som kan uppstå då fostret exponeras för alkohol. Den årliga totala samhällskostnaden för FAS år 2014 beräknades till närmare 14,4 miljarder.

Ett hälsopedagogiskt förhållningssätt i vården kan skapa ett bättre samarbete mellan sjukvård och brukare för att ge dem som drabbats bästa möjliga förutsättningar i livet. Tyvärr används inte kunskapen på bästa sätt idag.

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.

Despite widespread recognition of the risks that parental drug use pose to children, few resources are available to help such children. Using a developmental intervention approach, the authors designed and tested a model curriculum for use with groups of latency-aged children in schools located in communities where drug use is pervasive. In implementing this curriculum, the authors documented the need that children affected by family drug use have for workable strategies and skills for coping with aversive environments. The responsiveness of group participants to structure, predictability, and affirmation in the groups was remarkable. Measurable changes occurred in classroom behavior and feelings of self-worth. Obstacles to implementing and testing such an intervention are discussed.

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.

The 2011 John Bowlby Memorial Conference, 'From Broken Attachments to Earned Security - The Role of Empathy in Therapeutic Change', focussed on what needs to take place to facilitate empathy and attunement and ultimately the achievement of earned security. The confernce posed the challenge of how to re-establish a secure sense of self, mutuality, and the capacity for inter/intra-subjectivity when difficulties in empathy and attunement exist as a result of relational trauma. This can be between parent and child, within adult relationships, between client and therapist, or in organisational contexts.

The outstanding collection of papers in this volume make a significant contribution to the field of attachment and our understanding of how child rearing affects each aspect of our lives, from the interpersonal to the organisational and societal. Each paper moves beyond the academic and theoretical to provide answers to the many difficult questions raised at the conference.

The practical, sometimes step-by-step explanation of the use of empathy in one-to-one clinical work, in health service organisations or society generally, offer a positive and hopeful way forward. All of the presenters faced up to the challenges of repairing or reversing the impact of derailed attachments and the toxic impact of trauma, offering a realistic but hopeful route to improved relating and healthier attachments.

This publication will be a valuable resource for students, seasoned practitioners, and health service professionals alike who want to enhance their understanding of empathy and attachment in this demanding field.

Subject areas covered by your book in order of importance and key subject area:

- causes of insecure attachments

- impact of relational trauma

- how to re-establish a secure sense of self

- working one to one and in organisational settings

Families with parental affective disorder participated in a large-scale longitudinal study which involved participation in a standardized, short-term, psychoeducational preventive intervention. These families were followed for at least 3 years. An analysis of clinical material from the first 12 families to complete the intervention identified specific healing principles that contributed to positive changes in behavior and attitude. The healing elements of the intervention included demystification of the illness, modulation of shame and guilt, increase in the capacity for perspective taking, and development of a hopeful perspective and belief in one's own competence. Therapeutic effectiveness evolved in a process that linked cognitive information and presented depression as an illness that could be understood with the acknowledgement of family members' individual and collective experience. In this way, families developed a shared understanding of the illness that was useful over time. This article discusses the ways in which the healing principles promoted changes in family members' behavior and attitude, which, in turn, enhanced resiliency in children.

In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

In this paper, we aim to review the growing body of research on the psychosocial well-being of refugee children. We start with an overview of the chronological models for the refugee experience that conceptualize the process of forced migration as a long-term adverse context of cumulating risk factors, functioning as a pervasive threat to refugee children's mental health. Next, we briefly summarize the literature on refugee children's mental health as the starting point for a critical reflection on the dominance of the symptom-focused, trauma-centred approach which characterises much of refugee research. Drawing from this, we argue for the pertinence of research on refugee children's mental health from a family perspective. Finally, we propose a model for the refugee family experience, which integrates multiple individual, family and cultural processes, and we organise existing findings on refugee families in relation to six domains of the refugee family life. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Vilken människosyn och vilka värderingar ligger till grund för socialtjänstens verksamhet, och hur har de påverkat uppbyggnaden av dagens socialtjänst? Kan sociala insatser huvudsakligen beskrivas som myndighetsutövning, där även tvång kan komma i fråga, eller kan de ses som en verksamhet med respekt för den enskildes vilja och integritet? Under socialvårdens utveckling från fattigvård till socialtjänst har två utomparlamentariska grupper utifrån olika ideologiska utgångspunkter haft stor betydelse för socialvårdslagarnas innehåll och utformning. Centralförbundet för socialt arbete (CSA) verkade som initiativtagare och pådrivare när de första lagarna stiftades vid förra sekelskiftet. Samarbetskommittén för socialvårdens målfrågor, som bildades i slutet av 1960-talet, hade möjlighet att påverka Socialtjänstlagens slutliga utformning.

Boken innehåller en skildring av den tidigare socialvården och beskriver hur de två grupperna agerade för att få gehör för sina idéer. Särskild uppmärksamhet ägnas Samarbetskommittén och dess framgångar och misslyckanden under den 14 år långa lagstiftningsprocessen, som i det turbulenta slutskedet med många regeringsskiften och skiftande ideologier särskilt kom att handla om tvångsvården av vuxna missbrukare.

Boken vänder sig främst till studerande och verksamma inom socialt arbete, men bör även vara av intresse för närliggande ämnesområden inom samhällsvetenskap och historia.

Denna grundbok i familjeterapi ger en bred introduktion till familjeterapins historia, dess grundläggande idéer och de viktigaste familjeterapeutiska modellerna.
Boken behandlar bl a:
• familjeterapins historia från 1950-talet till våra dagar,
• det teoretiska fundamentet för familjeterapi, inklusive en introduktion till systemteori, livscykelteori och kommunikationsteori,
• de viktigaste familjeterapeutiska modellerna, med fokus på deras teoretiska bas och praktiska användning.
Boken är avsedd för grundläggande högskole- och universitetsutbildning i psykologi, socialt arbete, vård och omsorg. Den är av intresse för alla som arbetar med familjer: psykologer, socionomer, vårdpersonal och präster.

Den 23 november 1995 bemyndigade regeringen det statsråd som har till uppgift att föredra ärenden om det offentliga skolväsendet och fristående skolor att tillkalla en kommitté (U 1995:14) med uppdrag att utreda hur ansvaret för utbildning och omvårdnad i anslutning till utbildning av funktionshindrade elever skall fördelas mellan stat, kommun och landsting samt vem som skall finansiera verksamheten

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.

Doktorsavhandling

Syftet med avhandlingen är att ur ett medborgarskaps- och kommunikativt perspektiv undersöka och problematisera funktionshindrade "brukares" självbestämmande i samtal som förs under s.k. brukarcentrerade teammöten organiserade av en vuxen- respektive en barn- och ungdomshabilitering. I mötena deltar en funktionshindrad brukare och/eller anhöriga och professionella från skilda verksamheter. Studien baseras på diskursanalys av 18 observerade och bandinspelade möten hållna av tio olika team. Analyserna visar att brukarna hade ett mer eller mindre begränsat inflytande över samtalens organisering. Inflytandet varierade med organiseringen av samtalen samt med i vilken utsträckning brukarna deltog aktivt genom att identifiera egna problem och framtida mål. Det synliggjorde en spänning mellan ett "idealt" självbestämmande och brukarnas förmåga/benägenhet att leva upp till de krav som det "ideala" självbestämmandet ställde och gav upphov till situationer i vilka dilemman mellan självbestämmande och paternalism uppstod. I analyserna av hanterandet av dessa situationer framkom att deltagarna i möten utan deltagande brukare motiverade sina åsikter och beslut rörande behandlingen av brukaren genom att referera till egna övertygelser om vad som är bäst för brukaren respektive till tolkningar av brukarens egna preferenser utifrån hennes/hans agerande i vardagslivet. I möten med deltagande brukare använde övriga deltagare diskursiva strategier som var mer eller mindre paternalistiska då de innebar att de styrde brukaren på ett sätt som det inte var säkert att brukaren själv ville. I avhandlingen diskuteras vilka möjliga strategier som skulle kunna öka brukarnas självbestämmande. Utfallet relateras också till det "samtalande" och sociala medborgarskap som brukarna i avhandlingen anses utöva samt till andra möjliga innebörder av ett socialt medborgarskapsutövande.

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.

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 i välfärdssamhället handlar om funktionshindrades livsvillkor på några centrala områden: arbete och försörjning, vård, omsorg och utbildning, men också om funktionshindrades roll som samhällsmedborgare med anspråk på delaktighet och inflytande.

Bokens fokus ligger till stor del på välfärdssystemets möjligheter och begränsningar relaterade till funktionshindrades villkor. Men det finns naturligtvis en rad andra faktorer som också påverkar medborgarnas villkor som till exempel utvecklingen inom ekonomi och arbetsmarknad och inte minst de attityder och föreställningar vi har om vad det innebär att ha ett funktionshinder.

Den historiska framställningen visar på en utveckling från ett ensidigt individuellt handikappbegrepp, som betonar individens sjukdomar, skador och andra brister som konstituerande för handikappet, till ett mer relativt funktionshinderbegrepp som betonar omgivningens betydelse för om handikapp föreligger eller ej.

Boken vänder sig till studerande på universitet och högskolor, framför allt inom socialt arbete och vårdvetenskap.

Rafael Lindqvist är professor i sociologi, med inriktning funktionshinderforskning, Uppsala universitet.

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.

Alva har en hund Musse. Musse är inte bara en hund, Alva ser Musse som en storebror också. När Alva får höra att Musse är gammal och inte kommer att leva länge till blir Alva både ledsen och arg, hon vill att han ska leva för alltid. Det är ju honom hon har som bästa vän och som hon berättar alla hemlisa för! Alva funderar över hur det ska gå till när Musse ska dö och vad händer med honom efteråt? Alva inser till slut att han inte försviner helt. Han finns ju kvar inom henne, lite i köket och kanske även i himlen.

Kristina och Vivianne, två motpoler vars liv löper parallellt i Solgläntans korridorer när de hälsar på sina mödrar. Sida vid sida i demensens skugga söker de sig till varandra, i behov av ett outtalat stöd. Vivianne gömmer sin osynliga sorg bakom lager av glada färger och en väldigt lång halsduk. Fast besluten att alltid se det positiva i livet väljer hon att hålla fast i nuet och leva för stunden, tacksam för alla minnen hon får. Kristina försöker förtränga sitt förflutna, men hon är rädd för att glömma. Rädd att pärlhalsbandet av minnen ska gå sönder. Rädd att bli som sin mamma, som hon i hemlighet önskar livet ur. Men döden kommer aldrig i tid. Den kommer alltid för sent. Eller för tidigt. För alltid i mitt hjärta är en roman om en oväntad vänskap, som kommer att betyda så mycket mer än Kristina och Vivianne någonsin hade kunnat ana. En vänskap som kommer att sträcka sig genom både tid och rum.

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.

Skriften bygger på rapporten "Program för att förebygga psykiatrisk ohälsa hos barn – en systematisk litteraturöversikt, utgiven 2010 av SBU.

Skolverket presenterar den första nationella utvärderingen av förskolan efter reformen 1998 då förskolan fick en läroplan och blev det första steget i det samlade utbildningssystemet för barn och ungdom. Utvärderingens övergripande syfte är att belysa hur förskolan utvecklats i olika avseenden efter reformen samt att ge en lägesbeskrivning av reformens effekter. Utvärderingen visar på att förskolans utveckling innehåller både positiva och problematiska inslag. Förskolans läroplan har tagits emot positivt i kommuner och förskolor, men har man lyckats uppnå det som var en av de viktigaste målen med reformen "en likvärdig förskola"?Förskolan har dessutom i en rad avseenden närmat sig skolan, i vissa fall på bekostnad av sin särart. Barns prestationer kartläggs och bedöms i ökad omfattning, vilket strider mot grundtankarna i reformen.

Beskrivning av vilket ansvar förskrivaren har utifrån lagar, förordningar och föreskrifter. Vägledning för förskrivare och annan personal inom hjälpmedelsområdet.

Kartläggningsrapport

"Föräldraboken om ADHD" vänder sig till föräldrar som har ett barn eller en tonåring med ADHD. Grundtanken är att ökad kunskap om ADHD ska göra det lättare för föräldrarna att förstå och stödja sitt barn.

Boken är skriven av psykolog Lena Westholm. Hon arbetar på ADHD-center inom Habilitering och Hälsa i Stockholms läns landsting.I boken konstateras att föräldrar till barn eller tonåringar med ADHD måste kämpa och använda mer energi än andra föräldrar för att få tillvaron att fungera. Det ställs stora krav på tålamod, planering och konflikthantering.

Läsaren ges tips på olika sätt att lösa problem och hur det kan bli lättare att hantera vardagen. Områden som tas upp är ADHD i olika åldrar, skolgång, medicinering, fritid, mat- och sovvanor, relationer, känslor med mera.

Föräldrautbildning erbjuds idag bl.a. inom förskola/skola, socialtjänst liksom hälso- och sjukvård. Lärandet kan beskrivas ur olika perspektiv. Om barnet är det primära brukar man tala om Parent Education, när fokus ligger på familjen som helhet talar man om Parent Training och när det är föräldrarna som står i centrum för utbildningsinsatsen säger man ofta Parent Support. En viktig tanke är att få tillstånd ett bra samarbete mellan föräldrar och personal. Det är nödvändigt för att skapa större delaktighet och ett bättre lärande för föräldrar.

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.

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

The current study demonstrates the effectiveness of an intervention that addresses both home care and day care for children with intellectual disabilities while also taking the large individual differences between the children into account. The KLINc Studio intervention was designed to improve the language development, communication skills, and emergent literacy of 10 children with complex communication needs. The focus of the anchor-based intervention program was on the stimulation of vocabulary learning via the incorporation of AAC into the learning environment in the most natural manner possible. While all of the children showed significant progress across the intervention period of 2 years, the group of speaking children showed greater development in the domains of receptive language and productive syntax than the group of non-speaking children. For heterogeneous groups of children with disabilities, the use of a combined intervention such as that described here appears to be promising.

The purpose of this study was to investigate the impact of fear of falling (FoF) on older patients with dizziness history and their caregivers to better determine holistic needs when developing a patient-family centered approach to falling risk reduction. A mixed-method design incorporating a phenomenological qualitative approach to explore the impact of fear of falling in fourteen patients as well as a family member or spouse of each patient. Quantitative analysis was used to further interpret results of interviews conducted before and after participation in a vestibular and balance rehabilitation program designed to reduce falling risk and improve balance confidence. Qualitative analysis of participant interviews pre and post vestibular rehabilitation revealed lifestyle changes for both participants and family caregivers due to FoF and need for reducing falling concerns. Age of the patient showed statistically significant differences in levels of balance confidence with younger subjects (≤65 years) showing more concerns about the consequences of falling even after rehabilitation than older subjects (>65 years). The study highlights the impact of FoF on participation and activity levels of patients and family caregivers as well as the need to thoroughly evaluate falling fears to achieve a holistic rehabilitation outcome.

The impact of parent-caring on the lives of 30 Caucasian women was studied using data from: 1) intensive interviews, 2) participant observations, and 3) the OARS Multidimensional Functional Assessment. Analysis of the qualitative data identified two caregiving modalities: 1) care provision and 2) care management. The social and behavioral precedents and consequences of entering the careprovider or manager role were identified. The costs of caregiving were much greater for providers than managers.

Abstract
Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

This article describes a Swedish study exploring the impact of a structured assessment process on both family and professional carers. A total of 20 professional carers conducted in-depth assessments with 245 family carers and were later interviewed about their experiences. The interviews indicated that the assessment process had provided valuable new insights and had challenged many existing preconceptions. They also afforded carers the opportunity to explore difficult emotional issues, suggesting the need to develop services to help carers deal with their feelings.

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)

The purpose of this article is to discuss the implementation of the International Classification of Functioning, Disability and Health (ICF), and the ICF version for Children and Youth (ICF-CY), within the context of augmentative and alternative communication (AAC). First, the use of the ICF and the ICF-CY in AAC research is analyzed. Second, examples of training and implementation of ICF from other contexts besides AAC are provided. Finally, we synthesize data to provide directions for future implementation of the ICF and ICF-CY in the field of AAC. We conclude that, within AAC, organizational routines and intervention documents need to be adapted to the universal language and classification framework of the ICF and ICF-CY. Furthermore, examples are needed to demonstrate how factors affect implementation at organizational and individual levels.

Purpose: This evaluation compared a new self-management program with land and water exercise (Moving On after STroke or MOST) to a standard education program (Living with Stroke or LWS). Participants: Of 30 persons with stroke (average age 68 and 2 years post stroke), 18 selected MOST and 12 chose LWS. Sixteen care partners participated. Method: Assessments at baseline, program completion, and 3-month follow-up included the Reintegration to Normal Living (RNL) Index, Activity-specific Balance Confidence (ABC) scale, exercise participation, and goal attainment (for the MOST group). Program delivery costs were calculated and focus groups conducted to examine participant expectations and experiences. Results: Social support was an important benefit of both programs, but only MOST participants improved significantly on the RNL (p < .05) and ABC (p < .001). Seventy-eight percent of all short-term personal goals in MOST were achieved, and overall goal attainment was above the expected level. At follow-up, a higher percentage of MOST participants were enrolled in exercise programs (p < .05). Conclusion: Although self-management programs with exercise are more costly to deliver than standard educational programs, these preliminary results indicate that such programs may be more effective in helping persons with stroke and care partners deal with the challenges of living with stroke.

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.

Abstract
AIMS AND OBJECTIVES:
The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.
BACKGROUND:
There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.
DESIGN AND METHODS:
Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.
RESULTS:
Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.
CONCLUSION:
To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.
RELEVANCE TO CLINICAL PRACTICE:
The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.

The failure of research findings to influence practice is well established, particularly in the field of social care. Provision of information alone rarely results in change. A project recently completed by the Social Policy Research Unit, University of York, took an innovative approach to the issue of translating research into practice.

This article considers the implications of suicide and violent deaths (including suicide, homicide, and accidents) for the development of interventions for parentally bereaved children. Analyses of data from the Family Bereavement Program find minimal differences in children's mental health problems, grief or risk and protective factors based on cause of parental death. In addition, cause of death did not substantially affect the relations between risk and protective factors and bereaved children's outcomes. It is concluded that cause of death from violence or suicide is not a very useful indicator of bereaved children's need for or likelihood of benefiting from an intervention.

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.

With an aging population who wish to remain living in the community, this article explores the experiences and benefits of receiving volunteer services from a home support program established to assist people with increasing needs to remain living independently. Face to face interviews explored how the services of informal carers (volunteers) provided through the program made a difference to the daily lives of 16 recipients. Improved life satisfaction was identified through the themes of being helped with daily activities, positive human contact, and fear of a poorer quality of life. It was found that addressing recipients' social, emotional, and mobility needs supported them to remain living at home.

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.

The impact of borderline personality disorder on family members of persons with BPD is articulated best by family members themselves. Despite an increase in research demonstrating more hopeful outcomes for the diagnosis, many mental health professionals remain unaware of recent advances in BPD treatments and therapies. This lack of awareness has dramatic consequences not only for patients, but for their families as well. This chapter describes the personal experiences of 12 family members with relatives with BPD. Expressed in one-hour semi-structured interviews, the family members' individual accounts centered on five key areas of their lives with their ill relative: (1) difficulty accessing current evidence-based knowledge about BPD and treatments; (2) a stigmatizing health care system; (3) prolonged hopelessness; (4) shrinking social networks; and (5) financial burdens. To improve the quality of services available to family members affected by BPD, social workers must educate themselves about the availability of professionals trained in BPD, BPD-specific treatment options, and BPD information resources. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

PURPOSE:
The purpose is to analyze the incidence and costs of accidents among Attention-Deficit/Hyperactivity Disorder (ADHD) patients.

METHODS:
The analysis relied on administrative medical, pharmaceutical, and disability claims for a national manufacturer's employees, spouses, dependents, and retirees (n > 100,000). Accidental injuries were identified using ICD-9 codes for injuries or poisoning treatment. ADHD sample consists of individuals with at least one claim for ADHD during 1996-98 (NADHD = 1308), which was compared with a matched control sample. In addition to descriptive statistics, multivariate analysis involving logistic regression was used to model the probability of having an accident claim in 1998. This probability was estimated for the whole population, for adults alone, for children (under age 12 years), and for adolescents (age 12-18 years). We also estimated a generalized estimation equation (GEE) model to account for the possibility of multiple accident claims for a single patient.

RESULTS:
ADHD patients had a greater probability of having at least one accident claim than their controls for children (28% vs. 18%), adolescents (32% vs. 23%), and adults (38% vs. 18%). Although ADHD patients' costs were greater than their controls for adults ($483 vs. $146), there was no difference for children or adolescents. However, among patients with accident claims, the average number of accident claims was similar for both groups (3.6 vs. 3.5) and costs were not statistically different. The multivariate analysis confirms this utilization pattern: the odds of having an accident for ADHD patients were 1.7 times greater than for controls.

CONCLUSIONS:
ADHD was a significant predictor of having an accident claim. However, for people with an accident claim, ADHD patients and controls had a similar number of accident claims and costs.

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)

Background—Spousal caregivers of cancer patients suffer psychological and physical burdens that may affect their risk of subsequently developing coronary heart disease and stroke.

Methods and Results—Cancer patients were identified in the Swedish Cancer Registry, and information on their spouses was retrieved from the Swedish Multi-Generation Register. Follow-up of caregivers was performed from the date of the first diagnosis of cancer in their spouses through 2008. Standardized incidence ratios were calculated for spousal caregivers of cancer patients compared with those without an affected spouse. After the cancer diagnosis in wives, the risks of coronary heart disease, ischemic stroke, and hemorrhagic stroke in husbands were 1.13 (95% confidence interval [CI], 1.10–1.16), 1.24 (95% CI, 1.21–1.27), and 1.25 (95% CI, 1.18–1.32), respectively. The corresponding risks in wives with an affected husband were 1.13 (95% CI, 1.10–1.16), 1.29 (95% CI, 1.26–1.32), and 1.27 (95% CI, 1.19–1.34). The increases were consistent over time and were more pronounced if the spouse was affected by a cancer with a high mortality rate, such as pancreatic and lung cancers.

Conclusions—Spousal caregivers of cancer patients have increased risks of coronary heart disease and stroke that persist over time. Clinical attention should be paid to spousal caregivers, especially those caring for cancer patients with high mortality rates.

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.

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.

Abstract

Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.

Inspirationsmaterial som vänder sig till dig som vill få inspiration kring frågor om individualisering av anhörigstödet. Det bygger dels på kunskapsöversikten med samma namn, samt de frågor och diskussioner från det lärande nätverket inom "Individualisering, utveckling och utvärdering" perioden 2008 och 2009.

Ett av Nationellt kompetenscentrum Anhörigas (NKA) prioriterade områ-
den är Individualisering, utvärdering och utveckling av anhörigstöd. Syftet
med denna kunskapsöversikt är att utifrån en litteraturgenomgång beskriva
hur anhörigstöd har utvecklats och vad forskning och utvärderingar av anhörigstöd
har givit för resultat med fokus speciellt på anhörigstödets anpassning
till anhörigas olika förutsättningar.
Frågeställningar som studeras är:
• Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
• Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
• Hur ser anhörigas behov av stöd ut?
• Vad har utvärderingar av olika former av anhörigstöd givit för resultat
när det gäller anpassning till individuella behov och situationer.
Kunskapsöversikten bygger på publicerade forskningsresultat, FoUrapporter,
utredningar och offentliga skrifter från tidsperioden år 2000 till
mitten av år 2008. Endast svenska förhållanden studeras.
Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar
av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig
300 och framåt. Statens satsningar har varit stora och anhörigstödet
har utvecklats starkt, men mycket återstår att göra inom området. Kunskap
som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet
och om anhörigstödet motsvarar anhörigas behov.
För att problematisera vad det är för olika slags behov och situationer
som anhörigstödet skall möta görs en genomgång av den kunskap som
finns om anhörigskapets olika förutsättningar. Teman som behandlas är
olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform,
sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vårdoch
omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns
betydelse, socialt stöd och coping. Resultatet av denna genomgång
visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer
och att detta ställer krav på anhörigstödet om det skall skräddarsys eller
individualiseras.
Hur det är att vara anhörig och anhörigvårdare, speciellt till personer med
demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhöri-10
gas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman
samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma
samtidigt och kanske till och med förutsätter varandra. Återkommande
inom forskningen beskrivs känslomässiga och existentiella upplevelserna
som svåra, tillsammans med bundenhet och fysisk trötthet. Studier
visar även att anhöriga kan skatta sina liv i positiva termer och att det är
tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna
stödbehov, men insatser som efterfrågas är avlösning (flexibel och med kort
varsel), information och kunskap, någon att tala med, att bli bekräftad, uppskattad
och sedd samt ekonomisk ersättning. Att vara anhörig i samband
med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon
som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets
slutskede kan innebära speciella krav och förväntningar. En presentation ges
därför av den kunskap som vi har av att vara anhörig i dessa specifika situationer.

Genomgången avslutas med en redovisning av de utvärderingar som har
gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård
och växelvård, dagverksamhet, kombination av dag- och nattavlösning och
avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av
personal, anhörigcentraler och träffpunkter, må bra-aktiviteter, enskilda
samtal samt övrigt stöd. De erfarenheter som har dragits av att använda
instrumentet COAT för planering, uppföljning och utvärdering av stöd till
anhöriga redovisas samt resultaten från de två svenska kontrollerade interventionsstudierna
om anhörigstöd som finns där resultaten visar att utbildning
och stödgrupper för anhöriga har positiva effekter.
Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget
inom området eftersom dokumentation och systematiska uppföljningar
av befintliga verksamheter när det gäller innehåll och kvalitet,
vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning
saknas. Området är också behäftat med en del metodologiska svårigheter
som bland annat medför att det är svårt att jämföra resultaten mellan olika
studier. Mest kunskap har vi om sammanboende anhörigas situation, oftast
makar och makor och dessutom anhöriga till personer med demenssjukdomar.
Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för många
anhöriga, men att vi inte kan uttala oss om vilka dimensioner som är bra för
vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske
inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation
och målet med anhörigstödet kan också utvecklas.
Som en (ofta outtalad) röd tråd i de texter som ligger till grund för kunskapsöversikten
går samtalets eller mötets betydelse. Inom ramen för ett av 11
NKA:s lärande nätverk konstateras också att det enskilda samtalet kanske är
vårt mest underskattade anhörigstöd. Samtalet som stödform har dock inte
lyfts fram i någon större utsträckning inom forskning och utvärderingar
vilket innebär att mycket av innehållet i dagens anhörigstöd är osynliggjort.
Likaså saknar vi dokumenterad kunskap om det som kan benämnas som
osynligt stöd det vill säga de mer individbaserade kvalitativa dimensionerna
som kan innebära att anhöriga upplever sig sedda, känner sig trygga, har
förtroende för personal etc. Det är i samtal och möten som grunden för
detta stöd läggs.

Ett av Nationellt kompetenscentrum Anhörigas (NKA) prioriterade områ-
den är Individualisering, utvärdering och utveckling av anhörigstöd. Syftet
med denna kunskapsöversikt är att utifrån en litteraturgenomgång beskriva
hur anhörigstöd har utvecklats och vad forskning och utvärderingar av anhörigstöd
har givit för resultat med fokus speciellt på anhörigstödets anpassning
till anhörigas olika förutsättningar.
Frågeställningar som studeras är:
• Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
• Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
• Hur ser anhörigas behov av stöd ut?
• Vad har utvärderingar av olika former av anhörigstöd givit för resultat
när det gäller anpassning till individuella behov och situationer.
Kunskapsöversikten bygger på publicerade forskningsresultat, FoUrapporter,
utredningar och offentliga skrifter från tidsperioden år 2000 till
mitten av år 2008. Endast svenska förhållanden studeras.
Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar
av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig
300 och framåt. Statens satsningar har varit stora och anhörigstödet
har utvecklats starkt, men mycket återstår att göra inom området. Kunskap
som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet
och om anhörigstödet motsvarar anhörigas behov.
För att problematisera vad det är för olika slags behov och situationer
som anhörigstödet skall möta görs en genomgång av den kunskap som
finns om anhörigskapets olika förutsättningar. Teman som behandlas är
olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform,
sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vårdoch
omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns
betydelse, socialt stöd och coping. Resultatet av denna genomgång
visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer
och att detta ställer krav på anhörigstödet om det skall skräddarsys eller
individualiseras.
Hur det är att vara anhörig och anhörigvårdare, speciellt till personer med
demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhöri-
10
gas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman
samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma
samtidigt och kanske till och med förutsätter varandra. Återkommande
inom forskningen beskrivs känslomässiga och existentiella upplevelserna
som svåra, tillsammans med bundenhet och fysisk trötthet. Studier
visar även att anhöriga kan skatta sina liv i positiva termer och att det är
tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna
stödbehov, men insatser som efterfrågas är avlösning (flexibel och med kort
varsel), information och kunskap, någon att tala med, att bli bekräftad, uppskattad
och sedd samt ekonomisk ersättning. Att vara anhörig i samband
med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon
som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets
slutskede kan innebära speciella krav och förväntningar. En presentation ges
därför av den kunskap som vi har av att vara anhörig i dessa specifika situationer.

Genomgången avslutas med en redovisning av de utvärderingar som har
gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård
och växelvård, dagverksamhet, kombination av dag- och nattavlösning och
avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av
personal, anhörigcentraler och träffpunkter, må bra-aktiviteter, enskilda
samtal samt övrigt stöd. De erfarenheter som har dragits av att använda
instrumentet COAT för planering, uppföljning och utvärdering av stöd till
anhöriga redovisas samt resultaten från de två svenska kontrollerade interventionsstudierna
om anhörigstöd som finns där resultaten visar att utbildning
och stödgrupper för anhöriga har positiva effekter.
Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget
inom området eftersom dokumentation och systematiska uppföljningar
av befintliga verksamheter när det gäller innehåll och kvalitet,
vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning
saknas. Området är också behäftat med en del metodologiska svårigheter
som bland annat medför att det är svårt att jämföra resultaten mellan olika
studier. Mest kunskap har vi om sammanboende anhörigas situation, oftast
makar och makor och dessutom anhöriga till personer med demenssjukdomar.
Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för många
anhöriga, men att vi inte kan uttala oss om vilka dimensioner som är bra för
vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske
inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation
och målet med anhörigstödet kan också utvecklas.
Som en (ofta outtalad) röd tråd i de texter som ligger till grund för kunskapsöversikten
går samtalets eller mötets betydelse. Inom ramen för ett av
11
NKA:s lärande nätverk konstateras också att det enskilda samtalet kanske är
vårt mest underskattade anhörigstöd. Samtalet som stödform har dock inte
lyfts fram i någon större utsträckning inom forskning och utvärderingar
vilket innebär att mycket av innehållet i dagens anhörigstöd är osynliggjort.
Likaså saknar vi dokumenterad kunskap om det som kan benämnas som
osynligt stöd det vill säga de mer individbaserade kvalitativa dimensionerna
som kan innebära att anhöriga upplever sig sedda, känner sig trygga, har
förtroende för personal etc. Det är i samtal och möten som grunden för
detta stöd läggs.

Ett av Nationellt kompetenscentrum Anhörigas (Nka) prioriterade områden har varit Individualisering, utvärdering och utveckling av anhörigstöd. Syftet med denna kunskapsöversikt är att utifrån litteraturgenomgångar beskriva hur anhörigstöd för anhöriga som ger omsorg till äldre personer, har utvecklats och vad forskning och utvärderingar av anhörigstöd har givit för resultat med fokus speciellt på anhörigstödets anpassning till anhörigas olika förutsättningar. Översikten är en uppdaterad version av en rapport med samma namn som kom ut år 2010.
Frågeställningar som studerats är:
 Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
 Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
 Hur ser anhörigas behov av stöd ut?
 Vad har utvärderingar av olika former av anhörigstöd givit för resultat när
det gäller anpassning till individuella behov och situationer. Kunskapsöversikten bygger på publicerade forskningsresultat, FoU-rapporter, utredningar och offentliga skrifter från tidsperioden år 2000 till mitten december år 2015. Endast svenska förhållanden studeras.Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig 300 och framåt. Statens satsningar har varit stora och anhörigstödet har utvecklats starkt, men mycket återstår att göra inom området. Kunskap som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet och om anhörigstödet motsvarar anhörigas behov. För att problematisera vad det är för olika slags behov och situationer som anhörigstödet skall möta görs en genomgång av den kunskap som finns om anhörigskapets olika förutsättningar. Teman som behandlas är olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform, sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vård- och omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns betydelse, socialt stöd och coping. Resultatet av denna genomgång visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer och att detta ställer krav på anhörigstödet om det skall skräddarsys eller individualiseras. Hur det är att vara anhörig som ger omsorg, speciellt till personer med demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhörigas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma samtidigt och kanske till och med förutsätter varandra. Återkommande inom forskning beskrivs känslomässiga och existentiella upplevelser som svåra, tillsammans med bundenhet och fysisk trötthet. Studier visar även att anhöriga kan skatta sina liv i positiva termer och att det är tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna stödbehov, men insatser som efterfrågas är avlösning (flexibelt och lättillgängligt), information och kunskap, någon att tala med (att bli bekräftad, uppskattad och sedd) samt ekonomisk ersättning. Att vara anhörig i samband med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets slutskede kan innebära speciella krav och förväntningar. En presentation ges därför av kunskap om att vara anhörig i dessa specifika situationer. Genomgången avslutas med en redovisning av de utvärderingar som har gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård och växelvård, dagverksamhet, kombination av dag- och nattavlösning och avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av personal, anhörigcentraler och träffpunkter, "må bra-aktiviteter", enskilda samtal samt övrigt stöd. De erfarenheter som har dragits av att använda instrumentet COAT för planering, uppföljning och utvärdering av stöd till anhöriga
redovisas samt resultaten från svenska kontrollerade interventionsstudier om anhörigstöd där resultaten visar att utbildning och stödgrupper för anhöriga har positiva effekter. Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget inom området anhörigstöd eftersom dokumentation och systematiska uppföljningar av befintliga verksamheter när det gäller innehåll och kvalitet, vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning saknas. Området är också behäftat med en del metodologiska svårigheter som bland annat medför att det är svårt att jämföra resultaten mellan olika studier. Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för
många anhöriga, men att det är svårt att uttala vilka dimensioner som är bra för vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation och målet med anhörigstödet kan utvecklas. I kunskapsöversikten diskuteras också avgränsningar när det gäller vad som skall kallas för anhörigstöd samt allmänt behovet av definitioner av använda ord och begrepp.

Cross-national comparisons employed welfare state classifications to explain differences in care use in the European older population. Yet these classifications do not cover all care-related societal characteristics and limit our understanding of which specific societal characteristics are most important. Using the Survey of Health, Ageing and Retirement (second wave, 2006–07), the effect of societal determinants relating to culture, welfare state context and socio-economic and demographic composition on informal and formal care use of older adults in 11 European countries was studied. Multinomial multi-level regression analyses showed that, in addition to individual determinants, societal determinants are salient for understanding care use. In countries with fewer home-based services, less residential care, more informal care support and women working full time, older adults are more likely to receive informal care only. Older adults are more likely to receive only formal home care or a combination of formal and informal care in countries with more extensive welfare state arrangements (i.e. more home-based services, higher pension generosity), whereas the odds of receiving a combination of informal and formal care are also larger in countries that specify a legal obligation to care for parents. We tentatively conclude that the incorporation of societal determinants rather than commonly used welfare state classifications results in more understanding of the societal conditions that determine older adults' care use.

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.

Abstract 
Objective: The aim of the study was to highlight informal caregivers' interest in using the Information and Communication Technology (ICT)-based ACTION service (Assisting Carers using Telematics Interventions to meet Older People's Needs) and their ideas for how to further develop and extend the service. The use of ICT is constantly increasing worldwide. Europe has the highest old age dependency ratio, but other parts of the world are also experiencing a dramatic ageing of their population. The demands for care are increasing, and resources are shrinking. One way to support informal caregivers is through ICT.

Methods: The study employed a qualitative design. Focus group interviews were carried out with informal caregivers in Sweden. The interviews were analysed using a latent content analysis method.

Results: The analysis yielded a major theme, striving to feel confident, with four categories: informal caregivers' reflections and ideas about ICT; promoting their own health process; increasing their knowledge bank and informal caregivers' rights; and striving for inclusiveness.

Conclusions: The present study highlights the challenges that informal caregivers face in their daily life as well as their resources to devise possible solutions that could improve their situation. To preserve their health, a carer support plan including regular health checks could be helpful. ICT-based support (such as the ACTION service) could act as a way forward for supporting informal caregivers in their striving to feel confident. The study highlighted that ICT-based support has the potential to act as a direct benefit for informal caregivers.

Abstract [en]
Providing unpaid informal care to someone who is ill or disabled is a common experience in later life. While a supportive and potentially rewarding role, informal care can become a time and emotionally demanding activity, which may hinder older adults' quality of life. In a context of rising demand for informal carers, we investigated how caregiving states and transitions are linked to overall levels and changes in quality of life, and how the relationship varies according to care intensity and burden. We used fixed effects and change analyses to examine six-wave panel data (2008–2018) from the Swedish Longitudinal Occupational Survey of Health (SLOSH, n = 5076; ages 50–74). The CASP-19 scale is used to assess both positive and negative aspects of older adults' quality of life. Caregiving was related with lower levels of quality of life in a graded manner, with those providing more weekly hours and reporting greater burden experiencing larger declines. Two-year transitions corresponding to starting, ceasing and continuing care provision were associated with lower levels of quality of life, compared to continuously not caregiving. Starting and ceasing caregiving were associated with negative and positive changes in quality of life score, respectively, suggesting that cessation of care leads to improvements despite persistent lower overall levels of quality of life. Measures to reduce care burden or time spent providing informal care are likely to improve the quality of life of older people.

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.

Syfte med föreliggande studie var att identifiera centrala kategorier och dimensioner som beskriver: "Föräldrars, till schizofrena barn, erfarenhet av kontakten med psykiatrisk vård". Beskrivningen bygger på föräldrars erfarenhet - behov, upplevelser och önskemål, av kontakten i samband med barns sjukdom. Barn är i studien är inte ett åldersrelaterat begrepp utan beskriver förhållandet till föräldern. Den metod studien bygger på är inspirerad av "Grounded theory" och har genomförts med ostrukturerade intervjuer. Fyra intervjuer med föräldrar till barn med en psykossjukdom har analyserats. Två män och fyra kvinnor ingår i studien, de representerar erfarenhet av kontakt av psykiatrisk vård från tre sjukvårsområden inom Stockholms läns landsting och kontakten omfattar 5-16 år. Resultatet visar såväl positiv som negativ erfarenhet av kontakten. De behov i kontakten som framträder är - behov av samarbete med psykiatrisk vård, - behov av att bli omhändertagna och - behov av kontakt med människor i samma situation. De upplevelser i kontakten som framkommer är - upplevelser av samarbete, - upplevelser av bristande samarbete - upplevelser av att bli omhändertagna. - upplevelser av dåligt bemötande, upplevelser av att bli skuldbelagda och - upplevelser av bristande kontinuitet i vården. De önskemål på kontakten som framkommer är - önskemål om samarbete, - önskemål om metoder för gott omhändertagande, - önskemål om behandlingsinriktning, - önskemål om att ej bli skuldbelagda, - önskemål om anhörigutbildning och önskemål om samarbete med IFS -Intresseföreningen för schizofreni eller andra psykotiska sjukdomar.

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.

Det finns idag mycket kunskap om barn med neuropsykiatriska funktionsnedsättningar (NPF) som uppmärksamhetsstörning med hyperaktivitet (Attention-Deficit/Hyperactivity Disorder ADHD) och autismspektrumtillstånd (AST). Det finns också en del kännedom om vilka konsekvenser barnens svårigheter får för individ och samhälle. Det är konstaterat att ADHD och AST kvarstår i vuxen ålder, även om symtombilden och problematiken kan te sig annorlunda. Kunskapen om föräldraskap hos vuxna med ADHD eller AST är dock begränsad. Syftet med denna studie var att på ett systematiskt sätt sammanställa kunskap om barn och föräldrar när föräldrar har konstaterad ADHD, ADHD-symtom eller AST samt evidens för metoder som syftar till att ge stöd i föräldraskapet. Tre frågeställningar har styrt arbetet:
1. Vad vet man om hur barnet och föräldraskapet påverkas när förälder/rar har
konstaterad ADHD?
2. Vad vet man om hur barnet och föräldraskapet påverkas när förälder/rar har
konstaterad AST/Aspergers syndrom?
3. Vilka evidensbaserade metoder prövade på dessa målgrupper finns som kan
påverka föräldraskapet och barnet/en?

När man möter en mamma eller pappa berättar de kanske om sitt barn. Men är barnen deras? I många andra sammanhang talas det om våra barn: skolan, sjukvården, föreningar gör också anspråk på att äga barnen. Världen kring handikappade barn sätter förhållandet på sin spets: där finns en myriad av yrken och institutioner, som hävdar att de både vet mer och vet bäst.
Experternas kunskaper är eftersökta samtidigt skall de uppvisa en måttfull och balanserad expertis; föräldrarnas kompetens skall erkännas enligt de föräldrar som intervjuas i boken. Föräldrarna till döva, hjärnskadade, diabetessjuka barn och barn med andra handikapp ger sin bild av mötet med sjukvården, daghemmet och skolan: en bild som är drastisk och dramatisk och skildrar dilemman, strider samt konkurrensen mellan med såväl professionella som andra föräldrar. Författaren hävdar emellertid att denna bild kan översättas till de flesta moderna föräldraskap: här ges den i en kondenserad och tillspetsad form.

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

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

Familjecentralens verksamhetsidé för öppna förskolan på familjecentraler – formulerat som en hypotes - har utvärderats steg för steg genom samla in data på sammanlagd sex familjecentraler för att pröva hållbarheten i hypotesen. Utvärderingen visar på ett föräldraskapande bland småbarnsföräldrar genom att de lär sig om barn och föräldraskap, får möjlighet att utöka sitt sociala kontaktnät och att bara vara i en trygg omgivning där socialt stöd finns till hands. De får tillsammans med andra känna sig 'good enough' som en vanlig förälder med ett normalt barn. Professionell följsamhet utmärker personalens arbetssätt. De bedömer den "mognadsgrad" som föräldern befinner sig i för att söka stöd och anpassar sitt förhållningssätt till föräldern genom fysiskt avstånd och djup i samtalet. På så vis kan pedagogiska, sociala och psykologiska mekanismer triggas igång och förklara de resultat som föräldrar upplever för dem själva och deras barn. Artikeln avslutas med en omformulerad hypotes om öppna förskolors verksamhet på familjecentraler

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".

Förändrad tillämpning av offentlig äldreomsorg – ett hot mot målsättningen om demokrati och jämställdhet Artikeln handlar om några effekter av den förändrade inriktningen på det offentliga ansvaret för äldreomsorgen och det är anhöriga till hjälpbehövande äldre som står i fokus.

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.

Natur och Kultur. 2001.Inbunden med skyddsomslag, 410 sidor, 23,5x15,5cm. 700 gram. Nära nyskick, anteckningar på pärmens insida.Jay och Robert Neugeboren växte upp i en judisk familj i New York under komplicerade och kaotiska emotionella förhållanden. Jay blev framgångsrik skönlitterär författare - Robert drabbades av svår psykisk sjukdom och skulle komma att åka in och ut på mentalsjukhus i fyra decennier. Han skulle underkastas alla tänkbara slags behandlingar - många med svåra biverkningar - men utan att få någon verklig hjälp. Galenskap och återhämtning är Jays bok om den fyra år yngre brodern och den psykiatriska vårdapparatens fullständiga misslyckanden att ge denne en anständig vård. Men det är framför allt en bok om hopp. Neugeborens budskap är att även svåra psykiska sjukdomar som schizofreni i hög grad är behandlingsbara. De kanske inte går att bota helt med det finns hjälp för dessa människor och hopp om återhämtning. Detta kan ske med hjälp av bra medicinsk behandling, adekvat psykoterapi men framför allt genom ett personlig engagemang hos personerna i den sjukes omgivning. Neugeboren berättar också om många spännande och dramatiska möten med andra människor som lärt sig att leva fullvärdiga liv trots svår psykisk sjukdom

Socialstyrelsen har på regeringens uppdrag tillsammans med Skolverket och Specialpedagogiska institutet analyserat förutsättningarna för att samordna de individuella planer som ett barn, en ungdom och en vuxen person med funktionshinder kan ha. Med funktionshinder menas det komplexa sambandet mellan förekomst av en sjukdom, skada eller liknande och begränsad aktivitet och delaktighet. Särskild uppmärksamhet har ägnats åt vad som behöver förändras i regelverken.

Den huvudsakliga frågeställningen har varit vad som hindrar och stödjer gemensam individuell planering i regelverk, hos organisationer och hos aktörer (det senare avser personalen som är anställd i de berörda verksamheterna). Ytterligare en frågeställning har varit om gemensam planering kan innebära några negativa konsekvenser för den enskilde.

Förutsättningarna för samordnad och gemensam planering har analyserats på tre nivåer: individnivå, organisationsnivå och nationell nivå. Kunskapen om de två förstnämnda nivåerna bygger på skriftlig och muntlig information från brukarföreträdare, personal, verksamhetsansvariga och myndighetsföreträdare i Sverige och i Norge. På den tredje nivån, som berör rapportens huvudresultat, har kunskap inhämtats genom granskning av de bestämmelser om individuella planer som finns i lagar, förordningar eller i för sammanhanget relevanta förarbeten och myndighetsföreskrifter. Ett antal analysfaktorer har använts som stöd för granskningen. De lagstiftningsområden som valts ut för granskning är socialtjänst, hälso- och sjukvård och skollagsreglerade verksamheter samt integration, socialförsäkring och arbetsmarknad. Förutsättningarna för gemensam planering har analyserats utifrån sambandet mellan de tre nivåerna. Rapportens bilaga visar en översikt av bristande överensstämmelser mellan de berörda regelverken.

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)

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.

This article reviews the major underpinnings of the Japanese welfare state in the context of social care from a feminist perspective. In Japan, family-care responsibilities have traditionally been assigned to women; hence, care has long been a women's issue. However, as the social contract of a male breadwinner and a "professional housewife" gradually fades out, Japanese women find more opportunities to renegotiate their caring roles. Of course, this social transformation did not occur in isolation, it was influenced by patterns in economic development, state policies and mainly demographic changes. All this has stimulated new state responses in the form of social welfare expansion that arguably aim to relieve women of the burdens of family-care. The issue remains, however, as to whether Japan would be able to recognise that the main structural issues of population ageing do not originate from demographic changes, but from a strict gendered division of labour and gender inequality.

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.

The thesis consists of four self-contained papers. Paper 3: Does informal eldercare impede women's employment? The case of European welfare states (Forthcoming in Feminist Economics) European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. The effects of informal caregiving seem to be more negative in the Southern European countries, less negative in the Nordic countries, and in between these extremes in the Central European countries included in the study. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the degree of degree of coercion in the caring decision. Paper 4: The employment costs of caregiving in Norway Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender (LOGG) survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states.

Abstract The thesis consists of four self-contained papers. Paper 1: The long term effect of own and spousal parental leave on mothers' earnings We take advantage of the introduction of a Norwegian parental leave reform in 1993 to identify the causal effect of parental leave on mothers' long-term earnings. The reform raised the total leave period by seven weeks, but reserved four weeks for the father. The reform process was fast, so all mothers were already pregnant at the time of the policy announcement. Applying a regression discontinuity design we find that women who had their last child immediately after the policy change had higher mean yearly earnings from 1995 to 2005 and long-run yearly earnings (in our last year of data in 2005) compared to women who had their last child immediately before the reform. However, the estimate is sensitive to extreme observations, to restrictions regarding eligibility, and to the exclusion of observations within a window of three days before and after the reform. Paper 2: Do laws affect attitudes? An assessment of the Norwegian prostitution law using longitudinal data (Forthcoming in International Review of Law and Economics) The question of whether laws affect attitudes has inspired scholars across many disciplines, but empirical knowledge is sparse. Using longitudinal survey data from Norway and Sweden, collected before and after the implementation of a Norwegian law criminalizing the purchase of sexual services, we assess the short-run effects on attitudes using a difference-indifferences approach. In the general population, the law did not affect moral attitudes toward prostitution. However, in the Norwegian capital, where prostitution was more visible before the reform, the law made people more negative toward buying sex. This supports the claim that proximity and visibility are important factors for the internalization of legal norms. Paper 3: Does informal eldercare impede women's employment? The case of European welfare states (Forthcoming in Feminist Economics) European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. The effects of informal caregiving seem to be more negative in the Southern European countries, less negative in the Nordic countries, and in between these extremes in the Central European countries included in the study. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the degree of degree of coercion in the caring decision. Paper 4: The employment costs of caregiving in Norway Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender (LOGG) survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states

Behavioral genetic investigations have consistently demonstrated large genetic influences for the core symptom dimensions of attention-deficit/hyperactivity disorder (ADHD), namely inattention (INATT) and hyperactivity (HYP). Yet little is known regarding potential similarities and differences in the type of genetic influence (i.e., additive vs. nonadditive) on INATT and HYP. As these symptom dimensions form the basis of the current Diagnostic and Statistical Manual of Mental Disorders subtype classification system, evidence of differential genetic influences would have important implications for research investigating causal mechanisms for ADHD. The current meta-analysis aimed to investigate the nature of etiological influences for INATT and HYP by comparing the type and magnitude of genetic and environmental influences each. A comprehensive literature search yielded 79 twin and adoption studies of INATT and/or HYP. Of these, 13 samples of INATT and 9 samples of HYP were retained for analysis. Results indicated that both dimensions were highly heritable (genetic factors accounted for 71% and 73% of the variance in INATT and HYP, respectively). However, the 2 dimensions were distinct as to the type of genetic influence. Dominant genetic effects were significantly larger for INATT than for HYP, whereas additive genetic effects were larger for HYP than for INATT. Estimates of unique environmental effects were small to moderate and shared environmental effects were negligible for both symptom dimensions. The pattern of results generally persisted across several moderating factors, including gender, age, informant, and measurement method. These findings highlight the need for future studies to disambiguate INATT and HYP when investigating the causal mechanisms, and particularly genetic influences, behind ADHD.

CONTEXT: Prior research suggests that drug abuse (DA) is strongly influenced by both genetic and familial environmental factors. No large-scale adoption study has previously attempted to verify and integrate these findings. OBJECTIVE: To determine how genetic and environmental factors contribute to the risk for DA. DESIGN: Follow-up in 9 public databases (1961-2009) of adopted children and their biological and adoptive relatives. SETTING: Sweden. PARTICIPANTS: The study included 18 115 adopted children born between 1950 and 1993; 78 079 biological parents and siblings; and 51 208 adoptive parents and siblings. MAIN OUTCOME MEASURES: Drug abuse recorded in medical, legal, or pharmacy registry records. RESULTS: Risk for DA was significantly elevated in the adopted offspring of biological parents with DA (odds ratio, 2.09; 95% CI, 1.66-2.62), in biological full and half siblings of adopted children with DA (odds ratio, 1.84; 95% CI, 1.28-2.64; and odds ratio, 1.41; 95% CI, 1.19-1.67, respectively), and in adoptive siblings of adopted children with DA (odds ratio, 1.95; 95% CI, 1.43-2.65). A genetic risk index (including biological parental or sibling history of DA, criminal activity, and psychiatric or alcohol problems) and an environmental risk index (including adoptive parental history of divorce, death, criminal activity, and alcohol problems, as well as an adoptive sibling history of DA and psychiatric or alcohol problems) both strongly predicted the risk for DA. Including both indices along with sex and age at adoption in a predictive model revealed a significant positive interaction between the genetic and environmental risk indices. CONCLUSIONS: Drug abuse is an etiologically complex syndrome strongly influenced by a diverse set of genetic risk factors reflecting a specific liability to DA, by a vulnerability to other externalizing disorders, and by a range of environmental factors reflecting marital instability, as well as psychopathology and criminal behavior in the adoptive home. Adverse environmental effects on DA are more pathogenic in individuals with high levels of genetic risk. These results should be interpreted in the context of limitations of the diagnosis of DA from registries.

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.

Att hantera vardagen - en utbildning som stöd för anhörigvårdare, ÄO FoU-rapport 2007:1. L. Johansson and K. Renblad.

Mounting pressure is being exerted to ensure that the delivery of care is evidence-based and clinically effective. However, the challenge this presents to practitioners is complex. The authors propose that successful implementation of evidence into practice is a function of three elements: the nature of the evidence; the context in which the change is to take place; and the way the process is managed. A framework has been developed to represent these factors. For those about to embark on implementation work, this article closes by highlighting a number of key questions for consideration, stimulated by the framework.

This article explores innovative and interactive ways of working with people who have severe learning disabilities, special needs and/or challenging behaviour who, despite the efforts of those who support them, are not able to respond to attempts to interact with them. It examines the possibilities of communicating by using people's own behaviours and outlines how these methods of interaction can be developed into a 'language' which people with these disabilities recognize and find motivating. Entering into a person's world in a way that is not confusing or threatening may allow him/her to move from solitary self-stimulation to shared activity. People with these disabilities will then become aware of a world outside their own (sometimes they are aware of this but are unable to make a connection between what they perceive and themselves), and begin to understand their relationship to it. Surprise is an important element as it shifts attention from the inner space to the source of the intervention. A number of examples illustrate a range of person-centred approaches and the variety of disabilities that may be assisted.

Syftet med studien var att ta reda på hur insatser, stöd och samordning var utformat kring unga personer med demenssjukdomar och deras anhöriga i en kommun i Mellansverige. Med unga personer med demenssjukdomar avses de som är yngre än 65 år när de får diagnosen. De här personerna är mitt i livet när de drabbas av en sjukdom som förknippas med äldre människor och åldrande. Livssituationen kan se helt annorlunda ut än för äldre personer som drabbas av sjukdomen, därför bör stödet till dem vara utformat på ett annat sätt. Studien Metoden som användes i studien var kvalitativa intervjuer. Urvalet gjordes genom ett både strategiskt och snöbollsurval för att få en översikt av hur samordning, insatser och stöd var utformat i kommunen. Respondenterna i studien var en kurator inom landstinget, en biståndshandläggare, en LSS-handläggare, en demensspecialiserad undersköterska och en anhörigkonsult på kommunen. Som analysmetod användes Grounded Theory då forskningsmaterialet om unga personer med demenssjukdomar inte var tillräckligt omfattande.

Boken handlar om min tid som demensanhörig. Den innehåller också råd och tips till anhöriga samt egna skrivna dikter. Mer information om boken finns på min bokblogg www.vingpenna.blogspot.se.

Första upplagan 2009, nytryck 2020

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.

Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.

Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.

Göteborg, Norrköping och Västerås har försöksverksamhet inom Teknik för äldre II , ett regeringsuppdrag på Hjälpmedelsinstitutet. Uppdraget är att stödja utvecklingen av ny teknik och bättre boende för äldre och anhöriga. Göteborgs försöksverksamhet kallas Gôrbra för äldre och pågår 2011–2012. FoU i Väst utvärderar Gôrbra för äldre. I utvärderingen ingår en ekonomisk analys som ett bidrag till en samhällsekonomisk diskussion.

This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive interviews. Findings of the survey indicate that: 1) grandparents are a common source of weekly assistance-significantly more common than other relatives or friends and neighbors; 2) where grandparents participate, the number of other sources of support is also higher; and 3) help from grandparents has a positive, while the number of other sources of help has a negative, relationship to parental ability to maintain a positive emotional outlook and to avoid physical exhaustion. Findings of the interactive interviews suggest that: 1) grandparent participation can promote pride and "normalized attitudes" by helping grandparents to get to know the child with a disability on an intimate basis; 2) when grandparents do not participate, parents may feel the need to manage the information given to and the emotional responses experienced by grandparents who have not had a chance to get know and love the child through frequent, direct contact; and 3) parents are very concerned that if grandparents themselves begin to need help due to increased age and disability, they will not ask for it because of fear that parents are already overburdened by the unusual demands of their parenting roles

This article provides a review of the current literature relating to child bereavement. The author also describes the setting up, running and evaluation of group work for bereaved children, and examines how these experiences can help to inform future best practice.

BACKGROUND:
Emotional and behavioural problems in children are common. Research suggests that parenting has an important role to play in helping children to become well-adjusted, and that the first few months and years are especially important. Parenting programmes may have a role to play in improving the emotional and behavioural adjustment of infants and toddlers. This review is applicable to parents and carers of children up to three years eleven months although some studies included children up to five years old.
OBJECTIVES:
To:a) establish whether group-based parenting programmes are effective in improving the emotional and behavioural adjustment of children three years of age or less (i.e. maximum mean age of 3 years 11 months); b) assess the role of parenting programmes in the primary prevention of emotional and behavioural problems.
SEARCH STRATEGY:
We searched CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, Sociofile, Social Science Citation Index, ASSIA, National Research Register (NRR) and ERIC. The searches were originally run in 2000 and then updated in 2007/8.
SELECTION CRITERIA:
Randomised controlled trials of group-based parenting programmes that had used at least one standardised instrument to measure emotional and behavioural adjustment.
DATA COLLECTION AND ANALYSIS:
The results for each outcome in each study have been presented, with 95% confidence intervals. Where appropriate the results have been combined in a meta-analysis using a random-effects model.
MAIN RESULTS:
Eight studies were included in the review. There were sufficient data from six studies to combine the results in a meta-analysis for parent-reports and from three studies to combine the results for independent assessments of children's behaviour post-intervention. There was in addition, sufficient information from three studies to conduct a meta-analysis of both parent-report and independent follow-up data. Both parent-report (SMD -0.25; CI -0.45 to -0.06), and independent observations (SMD -0.54; CI -0.84 to -0.23) of children's behaviour produce significant results favouring the intervention group post-intervention. A meta-analysis of follow-up data indicates a significant result favouring the intervention group for parent-reports (SMD -0.28; CI -0.51 to -0.04) but a non-significant result favouring the intervention group for independent observations (SMD -0.19; CI -0.42, 0.05).
AUTHORS' CONCLUSIONS:
The findings of this review provide some support for the use of group-based parenting programmes to improve the emotional and behavioural adjustment of children with a maximum mean age of three years eleven months. There is, insufficient evidence to reach firm conclusions regarding the role that such programmes might play in the primary prevention of such problems. There are also limited data available concerning the long-term effectiveness of these programmes. Further research is needed.

Ranging across disciplinary boundaries, this book analyzes metaphors of dependency in differing contexts - the body, the family, work and leisure. Combining a robustly critical analysis with breadth of interdisciplinary sweep, Growing Up and Growing Old challenges the stigmatizing role that stereotypes can play in the lives of particular groups of people.

For this article we drew on material from a study in which we explored how people who were brought up in a family headed by a parent or parents with learning difficulties managed the transition to adulthood. Using evidence from in-depth interviews, we provided an assessment of how the now-adult children came through what would generally be seen as a risk-filled upbringing. Despite the problems they encountered in their childhood, many of which originated outside the home, most of the informants had maintained a valued relationship with their family and remained close to their mother.

AbstraktGråt är vanlig bland patienter och närstående men sällan studerat i palliativ vård. Gråten kan vara ett sätt för patienter och deras närstående att uttrycka sorg och hantera en situation fylld av stress som är orsakad av förluster, många allvarliga symtom och en nära förestående död.Studiernas övergripande syfte var att bidra till en djupare förståelse för vilken betydelse gråten har för patienter och deras närstående i palliativ hemsjukvård: Vad innebär gråten och hur påverkar den de berörda? Bandinspelade intervjuer gjordes med 14 patienter med cancersjukdom och 14 närstående i palliativ hemsjukvård. För att få en djupare förståelse genomfördes arbetet med ett hermeneutiskt metodologiskt angreppssätt enligt Gadamer.Resultatet visade att patienterna (studie I) beskrev olika dimensioner och funktioner av gråt; Intensiv och förtvivlad gråt för att ge uttryck för akuta behov: Stilla och sorgsen gråt som medvetet förlöste känslor; Tyst och tårlös gråt som en skyddande strategi. Som en tolkning av helheten sågs patienternas gråt (studie I) som ett sätt att uttrycka en inre känslomässig kraft, framkallad av olika faktorer, som orsakade förändringar i den nuvarande inre balansen. Genom att gråta öppet men också inombords skapades eller upprätthölls balansen. Studie (II) visade att de närstående upplevde att gråten var beroende av olika förutsättningar som attityder och mod, tid, trygghet, ärliga och tillitsfulla relationer. Omskakande och oroande händelser, utmattning i brist på egen tid och sympati från andra var omständigheter som utlöste gråten. De närstående försökte göra det bästa möjliga för patienten genom att anpassa eller dölja gråten, allt för att underlätta bördan och skapa en positiv motvikt till lidande och sorg. Tolkningen av helheten (studie II); närståendes gråt kunde vara ett uttryck för att dela något tillsammans för gemenskap, tröst och stöd eller att söka sig till ensamhet för enskildhet och återhämtning.Sammanfattningsvis kan gråten ses som en copingstrategi eftersom den reducerar spänningar och skapar befrielse, upprätthåller balans, ger tröst, ny energi och tillfällen för enskildhet. Det är ett sätt att uttrycka lidande men på samma gång kräver gråten energi och ger känslor av skam.En viktig del i professionens arbete bör därför vara att tillåta gråten, lyssna, vara närvarande, uppmuntra uttryck av känslor men också ge utrymme för enskildhet. Läkaren, sjuksköterskan och andra i teamet kan lindra patientens och närståendes känslor av skam och sårbarhet genom att bekräfta, legitimera olika uttryck för gråt och därmed skapa en tolerant, säker och trygg omgivning.

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.
Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.
Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.
Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.

Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.

Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.

Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Akademisk avhandling

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin's experiences of guilt and shame in end-of-life care.

Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin's experiences of guilt (Study III), and shame (Study IV) in end-of-life care.

Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self. The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin's self.

Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Haja adhd tar med dig på en spännande och initierad djupdykning i hur det är vid adhd och inte minst varför.

Varför har personer med adhd så svårt för att njuta av framtida segrar, och hur hänger det ihop med avhopp från utbildningar och drogers lockande låga?

Är det psykedeliska drömspel som hjärnans skärmsläckare (default mode network) bjuder oss på bara ett ointressant bakgrundsbrus, eller rent av huvudpersonen i kunskapen om vad adhd egentligen är?

Hur kan jammande jazzmusiker skapa förståelse för hur grupper av hjärnregioner spelar tillsammans, men också duckar för varandra?

Hur kan adhd vara så starkt kopplat till risker, eller rent av undergångsfaktorer, men samtidigt ha psykiatrins bästa prognos?

Med energi och lätthet förmedlar psykiatern Björn Roslund avancerad kunskap som gör skillnad i hur vi ser på och kan leva med adhd. Boken är skriven för dig som själv har adhd, anhöriga och för alla nyfikna som vill lära sig mer.

Barn och ungdom

Lillebror har hamsterkinder och stjärnögon. Han har också en ovanlig sjukdom som heter cystisk fibros. Den syns inte på honom men han kommer alltid att ha den. Ibland pussar jag honom på pannan. Då smakar det jättemycket salt. Han är god som saltlakrits. Boken är för barn eller syskon till barn med cystisk fibros, eller andra som har ett barn med cystisk fibros i sin närhet. På ett pedagogiskt och lekfullt sätt förklaras sjukdomen genom en storebrors ögon

A Handbook containing description of the theoretical basis for study of parental acceptance and rejection, interpersonal relationships, and mental health outcomes related to these relationships. Measures to assess parent-child relations, intimate partner relations, behavioral control, discipline, parenting education, and other issues are included in the Fourth Edition of the Handbook.

New research continues to challenge our assumptions about the fundamental nature and course of grief: its roots in our biology, our emotions, our cognitions, and our social interactions. The Handbook of Bereavement Research provides a broad view of diverse contemporary approaches to bereavement, examining both normal adaptation and complicated manifestations of grief.
In this volume, leading interdisciplinary scholars focus on three important themes in bereavement research: consequences, coping and care. In exploring the consequences of bereavement, authors examine developmental factors that influence grief both for the individual and the family at different phases of the life cycle. In exploring coping, they describe exciting new empirical studies about how people can and do cope with grief, without professional intervention. Until recently, intervention for the bereaved has not been scientifically guided and has become the subject of challenging differences of opinion and approach.
Chapters in the care section of the volume critically examine interventions to date and provide guidance for assessment and more empirically guided treatment strategies. The Handbook provides an up-to-date comprehensive review of scientific knowledge about bereavement in an authoritative yet accessible way that will be essential reading for researchers, practitioners, and health care professionals in the 21st century.

Socialstyrelsen följer upp och utvärderar 1994:11.

Regeringens skrivelse 2007/08:39.

Handlingsplanen är en del i individ- och familjenämnden, nämndens för funktionshindrade och äldrenämndens verksamhetsplanering för att erbjuda stöd som underlättar för de personer som vårdar eller stödjer en närstående

text och illustrationer: Elisabet Alphonse

barn/ungdom

Boken handlar om Hannahs mamma och hur en getingfobi kan påverka en förälders vardag.

Examining quality of life in 28 European countries, including the acceding and candidate countries as well as the current Member States of the EU, this report explores how Europeans perceive their health, to what extent they display healthy and unhealthy lifestyles, how easily they can access their national health care system and how satisfied they are with its performance.The analysis is based on data from the European Commission's Eurobarometer survey carried out in the acceding and candidate countries in Spring 2002 and standard EU 15 Eurobarometers. A summary of this report is also available

BACKGROUND: Informal caregiving by relatives is a great resource for individuals
as well as for society, but the caregiving role is associated with health
problems for the caregiver. This study aimed to compare caregivers' self-rated
health, number of recent days with poor health and psychological wellbeing with
that of non-caregivers in a general Swedish population.
METHODS: From 2004 to 2013, 90,845 Swedish people completed a postal
questionnaire about their health, number of recent days with poor health during
last month, psychological wellbeing and if they were performing caregiving or
not. Descriptive statistics, chi-square analysis, ANOVA, logistic regressions and
negative binomial regression models were used to investigate associations between
being a caregiver or not and health and wellbeing. Negative binomial regression
was used to assess the relation between caregiver status and recent days with
poor health or functioning.
RESULTS: Eleven percent reported having a caregiving role. Caregivers reported
poorer self-rated health compared to non-caregivers, also in adjusted models;
odds ratio (OR): 1.07 with a 95% confidence interval (CI): 1.01-1.13. Caregivers
also reported lower psychological wellbeing compared to non-caregivers; OR: 1.22,
CI: 1.15-1.30. Caregiving status was associated with more recent days with poor
physical health and more recent days with poor mental health.
CONCLUSIONS: This study suggests that caregivers have worse perceptions in
self-rated health and psychological wellbeing compared with non-caregivers,
indicating that the role of caregiver is adversely associated with health. This
association also appears in terms of reporting days of poor health in the last
month. The underlying mechanism of these associations, including the potential
detrimental health effects of being a caregiver, needs to be investigated in
longitudinal studies.

This second edition of Government at a Glance almost doubles the number of available indicators of OECD governments' performance, to nearly 60.
The indicators compare the political and institutional frameworks of government across OECD countries as well as government revenues and expenditures, employment, and compensation.
This publication provides evidence for policy makers by measuring the performance of governments in a comparative perspective. This also allows countries to benchmark their performance against other countries.
There are also indicators describing government policies and practices on integrity, e-government and open government, and introduce several composite indexes summarising key aspects of public management practices in human resources management, budgeting, procurement, and regulatory management.

Purpose of the Study: This study examines health-risk behaviors among "Baby Boomer" caregivers and non-caregivers. Design and Methods: Data from the 2009 California Health Interview Survey of the state's non-institutionalized population provided individual-level, caregiving, and health behavior characteristics for 5,688 informal caregivers and 12,941 non-caregivers. Logistic regression models were estimated separately for four individual health-risk behaviors -- smoking, sedentary behavior, and regular soda and fast-food consumption -- as well as a global health-risk measure. Results: Controlling for psychological distress and personal characteristics and social resources such as age, gender, income and education, work and marital status, and neighborhood safety, caregivers had greater odds than non-caregivers of overall negative health behavior and of smoking and regular soda and fast-food consumption. We did not observe significant differences in odds of negative behavior related to stress for spousal caregivers and caregivers in the role for longer periods of time or those providing more hours of weekly care compared with other caregivers. Implications: Our study found evidence that Baby Boomer caregivers engage in poor health behaviors that are associated with exposure to caregiving. Baby Boomer caregivers may be at risk for certain behavioral factors that are associated with disability and chronic illness.

Being a family member of a patient who is being treated in an acute care setting
for cancer often involves a number of challenges. Our study describes Norwegian
cancer care health professionals' perceptions of family members who served as
family caregivers (FCs) and their need for support during the in-hospital cancer
treatment of their ill family member. Focus group discussions were conducted with
a multidisciplinary team of 24 experienced social workers, physicians, and nurses
who were closely involved in the patients' in-hospital cancer treatment and care.
Drawing on qualitative hermeneutic analysis, four main themes describe health
professionals' perceptions of FCs during the patient's in-hospital cancer care:
an asset and additional burden, infinitely strong and struggling with
helplessness, being an outsider in the center of care, and being in different
temporalities. We conclude that it is a challenge for health care professionals
to support the family and create room for FC's needs in acute cancer care. System
changes are needed in health care, so that the patient/FC dyad is viewed as a
unit of care in a dual process of caregiving, which would enable FCs to be given
space and inclusion in care, with their own needs simultaneously considered
alongside those of the patient.

BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.

BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.

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.

This research examines whether parents' intimate partner physical violence (IPV) relates to their preschoolers' explicit memory functioning, whether children's symptoms of hyperarousal mediate this relation, and whether mothers' positive parenting moderates this relation. Participants were 69 mothers and their 4- or 5-year-old child (34 girls). Mothers completed measures of IPV, children's hyperarousal symptoms, parent-child aggression, and positive parenting. Measures of explicit memory functioning were administered to preschoolers. As expected, IPV correlated negatively with preschoolers' performance on explicit memory tasks, even after controlling for parent-child aggression and demographic variables related to preschoolers' memory functioning. Preschoolers' hyperarousal symptoms did not mediate the relation between IPV and explicit memory functioning, but mothers' positive parenting moderated this relation. Specifically, the negative relation between IPV and preschoolers' performance on 2 of the 3 explicit memory tasks was weaker when mothers engaged in higher levels of positive parenting. These findings extend research on IPV and children's adjustment difficulties to explicit memory functioning in preschoolers and suggest that mothers can ameliorate the influence of IPV on preschoolers' memory functioning via their parenting.

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

Into adulthood: a follow‐up study of 718 young people who were placed in out‐of‐home care during their teens - ResearchGate. Available from: http://www.researchgate.net/publication/230164185_Into_adulthood_a_followup_study_of_718_young_people_who_were_placed_in_outofhome_care_during_their_teens [accessed Aug 5, 2015].

Counselling. Stödsamtal i social arbete. S. Larsson and S. Trygged

Medium- and long-term effects of types of placement of the offspring of lower class families have been studied. The progeny of 28 mothers was reconstituted. The subjects were divided into three groups: 35 children abandoned and adopted early in privileged environments (A), 46 'biological mother-reared' children remaining in their disadvantaged social environments (B) and 21 children raised in institutions or foster homes (C). Analyses focused on IQ, scholastic performance and behaviour. Results show that the social environment has important effects: the differences between the three groups are very significant. For A and B groups tested in the schools, comparisons were made with the classmates. For the C group the effects of long-term emotional deprivation are superimposed on the effects of the social environment.

Trauma theory suggests that to recover from exposure to traumatic events, such as exposure to violence, therapeutic interventions should include opportunities to disclose and to process the fearful and stressful events. Yet little is known about the circumstances that foster disclosure of such information in therapeutic environments by children and related mental health outcomes for those children. In this study, the process of disclosure was examined among children ages 6 to 12 years (N = 121) in a community-based intervention program for children exposed to intimate partner violence (IPV). Therapists documented children's spontaneous disclosure in their group. Mothers and children completed demographic and standardized attitudinal and mental health questionnaires. Fifty-two percent of children spontaneously disclosed during therapy. Child ethnicity, harm to the child, internalizing behavioral adjustment problems, and engagement in therapy predicted disclosure. Disclosure within the group was associated with gains for individual children in internalizing behavioral adjustment problems and improvement in attitudes and beliefs concerning the acceptability of violence.

This article is a review of the literature on intergenerational transmission of posttraumatic stress disorder (PTSD) from fathers to sons in families of war veterans. The review addresses several questions: (1) Which fathers have a greater tendency to transmit their distress to their offspring? (2) What is transmitted from father to child? (3) How is the distress transmitted and through which mechanisms? And finally, (4) Which children are more vulnerable to the transmission of PTSD distress in the family? Whereas the existing literature deals mainly with fathers' PTSD as a risk for increased emotional and behavior problems among the children, this review also highlights the current paucity of knowledge regarding family members and extrafamilial systems that may contribute to intergenerational transmission of PTSD or to its moderation. Little is also known about resilience and strengths that may mitigate or prevent the risk of intergenerational transmission of trauma.

OBJECTIVE:
Longitudinal studies of children exposed to traumatic events show contrasting findings regarding their symptomatic change over time. The present study reports on a 30-month follow-up of preschool children and their mothers who had been exposed to Scud missile attacks.

METHOD:
Families displaced during the Gulf War after their homes had been damaged by the missile attack and a control group whose homes remained intact were interviewed about posttraumatic and general symptomatology, the mothers' capacity to control images, and the children's adaptive behavior.

RESULTS:
Stress symptoms decreased in the displaced children but not in their mothers. Both reported more posttraumatic symptoms than did the control group. No differences in the children's adaptive behavior were observed. Posttraumatic symptoms of the displaced children correlated with the mothers' avoidant symptoms. The mothers' avoidant symptoms at follow-up were statistically explained by the mothers' symptoms during the war and their capacity for image control, the duration of displacement, and the cohesion of the family.

CONCLUSIONS:
The maternal stress-buffering capacity constitutes a central element in children's protective matrix and is crucial in minimizing long-term internal suffering of traumatized preschool children.

Stroke is one of the oldest but least understood diseases, and it is one of the major public health problems facing the elderly. Recent epidemiological investigations have found that the incidence of stroke has been underestimated by about 50%, and that the burden of disease is highest in minority populations. Recent clinical and basic neuroscience research indicates that stroke is neither unpredictable nor irreversible. Many risk factors for stroke are readily identifiable, and evidence-based treatment may be used to reduce the likelihood of stroke among those at risk. Rapid diagnosis and evaluation of stroke and transient ischemic attack and their treatment, including surgery, anticoagulation, antiplatelet and other medical therapies, reduce the chance of recurrence. More aggressive treatment of blood pressure, even among patients who are not necessarily hypertensive, may also reduce the risk of future strokes. Once ischemic stroke has occurred, emergent therapy using thrombolysis may significantly reduce disability, even among the elderly. This review presents an update on definitions of stroke and its subtypes, stroke epidemiology, and the results of recent studies of stroke prevention and acute treatment.

This qualitative focus group study describes posttraumatic growth experiences of African American adolescents currently coping with parental breast cancer. Twelve adolescents participated in three focus groups assessing their experiences with parental cancer. Spontaneous accounts of posttraumatic growth were reported by all participants. A content analysis revealed reports in four of the five domains of posttraumatic growth identified by Tedeschi and Calhoun (1996) which included: greater appreciation for life, enhanced interpersonal relationships, increased sense of personal strengths, and changed priorities. An additional domain, change in health behaviors and attitudes, also emerged. These findings add important knowledge to the developing field of research in posttraumatic growth in populations where available research is scarce, especially among adolescents and racial minorities.

ett material avsett att ge en fullständigare förståelse för människan, speciellt gravt förståndshandikappade

This paper describes the work undertaken with children and adolescents who have lost a significant person in their lives through death. The author works with the paediatric nurse member of a palliative care team running groups for children and adolescents who have been bereaved.

The aim of the project is to invite the child/adolescent as soon as possible after bereavement to participate in groups with others who are grieving. This groups allow participants to express their feelings through art, play and discussion in a safe and confidential environment.

It is hoped by using a preventative approach such as this, that the incidence of some of the results of unresolved childhood grief, such as failed relationships, depression and ill-health in adult life can be minimised.

from www.oecd.org/health/longtercare/helpwanted

This article reports on an analysis of informal help and caregiving in Sweden with, for the first time, a focus on patterns of change over 17 years regarding scope, type of caregivers and the recipients of help. The discussion is based on results from a national survey repeated four times between 1992 and 2009. In the 1990s, the figures were stable, but from the late 1990s to 2009, there seems to have been a dramatic increase in the extent of informal help giving. Concerning types of helpers, the patterns implied involvement not only from family members, but also from other types of helpers. Two interpretative perspectives were used in the analysis: the first from recent welfare state changes and the substitution argument; the second from the present debate on civil society and its possible and changing role. These perspectives represent two partly complementary approaches to the understanding of the dynamics of informal involvement in contemporary Swedish society.

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

Avhandlingens övergripande syfte var att studera multidisciplinära teams,
äldre personers och familjemedlemmars erfarenheter av hemrehabilitering.
Avhandlingen baseras på fyra studier (I-IV). Alla studierna har en kvalitativa
beskrivande design. Datamaterialet utgjordes av fokusgruppsintervjuer med
personal arbetande i team i kommunal hälso- och sjukvård (I), intervjuer med
äldre personer, över 65 år, som vårdats på sjukhuset och därefter fortsatt
rehabilitering i hemmet (II,III,IV), samt familjemedlemmar involverade i de äldres
rehabilitering (II).
Studie I visade på betydelsen av att möta äldres individuella behov och att arbeta
utifrån ett rehabiliterande förhållningssätt i avsikt att ge en hjälp som inte innebär
att ta över handlingar från den äldre. Väsentligt var att i teamet reflektera över hur
man agerar utifrån den egna professionen för att kunna utveckla ett
rehabiliterande förhållningssätt i det dagliga arbetet. I resultatet framkom att
teamen uppfattade hemrehabilitering som positiv för de äldre, men mindre
lämpligt om de äldre var svårt sjuka och de kände sig otrygga i sitt hem. Respekt
för de äldres integritet i deras hem och att göra de närstående delaktiga i
rehabiliteringen betonades. Resultatet visade på att för att kunna utveckla
samarbetet i teamet finns behov av att diskutera varje professions ansvarsområde
och klargöra gränser mellan varandras ansvarområden. Behovet av att tillföra
psykosocial kompetens i teamet framhölls för att möta de äldres behov. I studie II
framkom att de äldre upplevde rehabiliteringen vara en balansgång i att känna av
vad kroppen orkar med för dagen och vad som är realistiskt att uppnå för att
känna välbefinnande. Tryggheten i att ha någon i familjen nära sig i hemmet var
oumbärligt för att våga utföra träning och vardagliga aktiviteter. Resultatet visar
på de äldres upplevelse av otillfredsställelse med att vara beroende av andra.
Familjemedlemmar var engagerade i de äldres rehabilitering genom att finnas till
hands, hjälpa till och vara stödjande, vilket var en självklar handling men också
utmanande i att kunna hjälpa på rätt sätt. Bristande information om hjälpmedels
funktion och användning skapade frustration. Resultatet visar att både de äldre
och deras familjemedlemmar ser hemmiljön bidra till att underlätta rehabilitering.

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.

The Holocaust has bequeathed to contemporary society a cultural lexicon of intensely powerful symbols, a vocabulary of remembrance that we draw on to comprehend the otherwise incomprehensible horror of the Shoah. Engagingly written and illustrated with more than forty black-and-white images, Holocaust Icons probes the history and memory of four of these symbolic relics left in the Holocaust's wake.

Jewish studies scholar Oren Stier offers in this volume new insight into symbols and the symbol-making process, as he traces the lives and afterlives of certain remnants of the Holocaust and their ongoing impact. Stier focuses in particular on four icons: the railway cars that carried Jews to their deaths, symbolizing the mechanics of murder; the Arbeit Macht Frei ("work makes you free") sign over the entrance to Auschwitz, pointing to the insidious logic of the camp system; the number six million that represents an approximation of the number of Jews killed as well as mass murder more generally; and the persona of Anne Frank, associated with victimization. Stier shows how and why these icons—an object, a phrase, a number, and a person—have come to stand in for the Holocaust: where they came from and how they have been used and reproduced; how they are presently at risk from a variety of threats such as commodification; and what the future holds for the memory of the Shoah.

In illuminating these icons of the Holocaust, Stier offers valuable new perspective on one of the defining events of the twentieth century. He helps readers understand not only the Holocaust but also the profound nature of historical memory itself.

Dissertation

Families with sick children often prefer home care to hospital care, and home care services (HCS)
are increasing worldwide with limited evidence on how to provide high quality HCS in different
settings. This thesis aims to provide a comprehensive view of HCS for sick children when provided
by county-based HCS organized to care for adults and children.
A convergent mixed methods design with data-collection 2015–2019 was used. Phenomenographic
analysis of interviews with 36 HCS healthcare professionals showed that caring for children was a
challenging but rewarding task. Hermeneutic phenomenology was used to analyse 37 family
member's lived experience of HCS as a possibility to strengthen family life and health when trustful
alliances were built with HCS healthcare professionals. A review of referrals to HCS during a threeyear period showed that 171 children with various ages, diagnoses and caring needs received HCS.
Calculations of one year's healthcare costs for 32 children who received care both at the hospial
and by HCS showed no increase in costs compared to estimated costs for only hospital care. Annual
productivity losses due to 25 parents' absenteeism from work, estimated from questionnaire-based
data, showed continued productivity losses during periods of HCS.
With trustful alliances between families, HCS and paediatric departments, cost-sustainable countybased HCS can be provided with high levels of family acceptability and positive effects on family
life and health in sick children of various ages, illnesses and stages of illness. However, unequal
accessibility and utilization may jeopardize care based on child and family needs.

A prospective study of 38 mothers with IQs less than 75 and 27 mothers with IQs over 85 who were also low income was conducted. This study was designed to distinguish between children's developmental risk associated with maternal disability and risk related primarily to poverty. Findings from administration of the HOME inventory showed that mothers with intellectual limitations had significantly lower scores, indicating greater developmental risk for their children due to environmental deprivation. Most of the variance between groups was found on the interaction subscale. This suggests that strategies focused on interaction will be beneficial in assisting mothers with intellectual limitations in raising their children.

Ethnographic and micro-ethnographic techniques were used to investigate how the strategies employed by two adults (a mother and a physical therapist) to initiate and maintain interactions with a 2-year-old child with multiple disabilities were reflective of the adult partner's beliefs and values about communication in general and about this child in particular. Results indicate that the physical therapist believed in using the child's existing abilities as the primary reference point for establishing a speech community with the child. The mother used the demands of the larger, mostly nondisabled speech community as her primary reference point. How these differences affect the nature of the child's membership and level of independence in these speech communities is discussed

It is a central feature of current Norwegian health and social care policy to see informal carers as active partners. However, research has revealed that carers often experience a lack of recognition by professionals. In 2010, the Norwegian Directorate of Health initiated a web-based competence-building programme (CBP) for health and social care practitioners aimed at facilitating collaboration with carers. The programme comprised case presentations, e-lectures, exercises and topics for discussion, and was introduced in 2012. It was flexible and free of charge. This article is based on a study (2012-2013) that followed the piloting of this CBP in four settings. The study aimed to explore factors that influenced the implementation of the programme and whether or not using it affected health and social care practitioners' attitudes and perceived capacity for collaboration with carers. The study employed a mixed-methods design. A questionnaire was distributed to all staff before and 5 months after the CBP was introduced, followed by focus group interviews with a sample of staff members and individual interviews with the leadership in the involved settings and those who introduced the programme. The quantitative data were analysed using descriptive statistics, which subsequently formed the basis for the focus group interviews. The qualitative data were analysed by means of content analysis. The programme's introduction was similar across all research settings. Nevertheless, whether or not it was adopted depended to a large extent on leadership commitment and engagement. In settings where the programme's use was monitored, supported by management and formed part of on-the-job training, there seemed to be a positive impact on staff attitudes concerning collaboration with carers. Participant staff reported that their awareness of, motivation for and confidence in collaboration with carers were all strengthened. In contrast, the programme was of minimal benefit in settings with low leadership engagement.

Few studies have focused on the child of a parent with cancer. Family systems and cognitive development theories suggest that the mother's illness affects the children and that families take action to help them. This study describes the ways in which school-age children cope with the mother's breast cancer and the ways in which their families help them cope. The results are based on semistructured interviews with 81 children 6-20 years old whose mothers had been diagnosed with breast cancer within the past two-and-a-half years. Interviews were tape-recorded, transcribed, and content analyzed. Eighty-four percent agreement on interrater reliability was achieved using three independent trained coders. Children and families used four types of strategies: acted as though they were in her shoes, carried on business as usual, tapped into group energy, and put her illness on the table. Parents, other family members, the children's friends, and adult friends helped the children. The results suggest ways that clinicians can understand the effect of the mother's breast cancer from the child's perspective and thus facilitate both the child's coping and the family's attempts to help the children.

Objective The aim of this study was to describe the experience of contact with formal psychiatric care, as narrated by family members of a person suffering from mental illness. Method The study was based on a qualitative design. Focus-groups with 16 family members were transcribed and interpreted using qualitative content analysis. Findings The findings present four themes; being disappointed with formal psychiatric care, being in need of understanding from and collaboration with formal psychiatric care, being positive about the care and the own contribution to the care and being subjected to preconceived ideas. The findings were interpreted as the families relationship with formal psychiatric care being characterized by a struggle for power. Conclusion To create a healthy situation for the families and thereby improve the situation for the patient, representatives of formal care should carefully consider how the families should be involved. Key words Family, focus groups, mental health, nursing, qualitative research

Abstract
Falls in older persons are prevalent and costly for the individual and the health system. Falls prevention guidelines have been developed from best evidence to minimise falls in older persons.

Aim: To synthesise the literature on falls prevention strategies used by community dwelling older persons and/or their informal carers and to compare the commonly adopted strategies with those recommended by falls prevention guidelines.

Data sources: Health sciences databases for full text articles published in English plus reference list searching of included articles.

Review method: An integrative review approach. Studies were included if they identified fall prevention management strategies used by community dwelling older adults and/or their informal carers. Quality appraisal was undertaken using appropriate Joanna Briggs Institute critical appraisal tools. Information relevant to the aim of the review were extracted and coded into categories then inductively sorted into sub-themes and themes.

Results: Of the seventeen studies included in the review, eleven identified older adults' falls prevention strategies, two investigated fall prevention strategies used by carers, and four explored perspectives of older persons together with their carers, representing the perspectives of an estimated 501 older persons and 102 carers. Strategies used by older adults arose because of self-awareness about their changing physical ability, and advice and support mainly from family or friends. Carer fall prevention strategy was predominantly around protection of the older adult from falling by discouraging independence.

Conclusions: The fall self-management strategies adopted by older adults and their carers to prevent falls, in the main, do not align with international best practice fall prevention guidelines.

Eventuellt stöd till anhöriga blir en kommunal fråga och tidigare fanns, med stor lokal variation och skönsmässighet, många anhörigvårdare formellt anställda som vårdbiträden ("anhörigsamariter"), en billig lösning för kommunen och välkommet för de anhöriga. Numera nästan avskaffat, skriver Gerdt Sundström här i en debatterande artikel om anhörigvårdare.

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

Kognitiv beteendeterapi (KBT) är en alltmer efterfrågad behandlingsform. Boken beskriver hur KBT kan tillämpas vid en rad olika psykiatriska diagnoser: separationsångest och paniksyndrom, generaliserat ångestsyndrom, specifi ka fobier, social fobi, tvångssyndrom, depression, beteendestörning och trotssyndrom, ADHD, ätstörningar, tics och Tourettes syndrom samt autism och självskadande beteende. Tillstånden beskrivs utifrån gällande diagnostiska kriterier, därefter visas hur KBT-modellen och beteendeanalysen kan se ut för respektive tillstånd och hur behandlingen kan läggas upp. Till de olika diagnoserna finns kliniska fallvinjetter. Boken avslutas med en översikt av det empiriska stödet för KBT vid de olika psykiska störningarna hos barn och ungdomar. Boken är avsedd som kursbok för all grundutbildning inom psykoterapi med KBT-inriktning. Den är också lämpad för professionellt verksamma behandlare.

This study reports the findings from 68 interviews with parents of disabled children who are users of seven key worker schemes in England and Wales. The interviews which lasted for one hour each, were tape-recorded, transcribed and analysed according to both a priori and emerging themes. The findings from this study have implications for policy and practice, for example, the necessity of protected time for key workers, the necessity of conveying clear information about the key worker's role, the importance of access to training and information for the key worker, the need for key workers to be proactive, and for their involvement in care plan and review meetings.

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.

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.

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,

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?

Kommunerna har i socialtjänstlagen ett uttalat ansvar för att genom stöd och avlösning underlätta för närstående som vårdar långvarigt sjuka, äldre och personer med funktionshinder. Syftet med denna rapport var att belysa de anhörigas upplevelse av de insatser som kommunerna har att erbjuda. 6 anhörigvårdare från olika kommuner i Jönköpings län har intervjuats. 4 av de intervjuade har på eget initiativ tagit en första kontakt med kommunen. övriga fick hjälp av personal i samband med sjukhusvistelse med förmedling av den första kontakten. Kontakterna har lett till ökade stödinsatser. Anhörigvårdarna är nöjda med stödet. Stödformer som avlösning, kontakter och träffar/studiecirklar upplevs som betydelsefulla.

Kommunerna har i socialtjänstlagen ett uttalat ansvar för att genom stöd och avlösning underlätta för närstående som vårdar långvarigt sjuka, äldre och personer med funktionshinder. Syftet med denna rapport var att belysa de anhörigas upplevelse av de insatser som kommunerna har att erbjuda. 6 anhörigvårdare från olika kommuner i Jönköpings län har intervjuats. 4 av de intervjuade har på eget initiativ tagit en första kontakt med kommunen. Övriga fick hjälp av personal i samband med sjukhusvistelse med förmedling av den första kontakten. Kontakterna har lett till ökade stödinsatser. Anhörigvårdarna är nöjda med stödet. Stödformer som avlösning, kontakter och träffar/studiecirklar upplevs som betydelsefulla.

En studie i två delar rörande målgruppen barn med grava rh – kontaktanvändare: Del 1: Inventering och beskrivning av dynamiska kommunikationsprogram och styrsätt (bl.a. MindMouse/CyberLink), del 2: Kommande interventionsstudie.

Projektet har en egen hemsida www.kommed.nu där du kan läsa mer. Där finns bl a rapporter och en mängd annan intressant information att hämta.

Projektansvariga: Gerd Zachrisson DART och Bitte Rydeman, DAKO i Halland.

Medel: 2-årigt projekt med stöd från HI - "IT i praktiken"

Nationellt kompetenscentrum anhöriga, Nka, har fått i uppdrag av Socialdepartementet
att utveckla ett nationellt kunskapsstöd till föräldrar och anhöriga till barn och ungdomar med flerfunktionsnedsättningar. Syftet med kunskapsstödet är att underlätta kunskapsinhämtning, erfarenhetsutbyte och nätverkskontakter för anhöriga

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.

Barn till föräldrar med psykisk ohälsa är en eftersatt grupp. Syfet med denna studie är att studera pedagogers utveckling som kompletterande anknytningsperson i relation till en tre årig fortbildning.Fortbildnigen ägde rum samtidigt som pedagogerna arbetade och innehöll teorier om barns utveckling, nämligen anknytningsteori, Affektteori samt Sterns teori om barns självutveckling.En narrativ metod användes och narrativen analyserades i relation till fortbildningens innehåll, teorier om pedagogers lärande och teorier om tidig utveckling.
Resultatet diskuteras utifrån pedagogers arbete med utsatta barn i förskolan, lärarutbildningens innehåll och fortbildning samt samverkan.

Vid habiliteringen i Alingsås har man arbetat med syskongrupper
sedan 1997. På olika sätt hade man då fått upp ögonen för
syskonens behov, dels genom alltmer ökande förfrågningar från
föräldrar om syskongrupper dels genom personalens egen
ökande kunskap och erfarenhet av syskon.

Denna rapport har kommit till på uppdrag dels från Södermalms stadsdelsförvaltning,
dels Äldreförvaltningen i Stockholms stad. Bakgrunden
är önskemålet från såväl Södermalms stadsdelsnämnd som stadens
äldrenämnd att se vilken roll korttidsvården har och kan ha, och om de
prioriteringar som skett under 2000-talet gagnat de äldre. Korttidsplats,
som är det begrepp Socialstyrelsen rekommenderar, har olika funktioner,
och inkluderar korttidsvård efter sjukhusvistelse, växelvård, avlastning
av anhörig och vård i livets slutskede.
På uppdrag av Södermalms stadsdelsförvaltning har en randomiserad
studie genomförts där de som ansökte om korttidsplats men fick avslag
lottades så att hälften, interventionsgruppen, fick korttidsplats medan
kontrollgruppen gick direkt hem med de insatser stadsdelsförvaltningen
beviljat. Denna studie utökades med ett uppdrag från Socialstyrelsen att
studera alla som skrivs ut från sluten vård under en månad till hemmet
på Södermalm. På uppdrag av Äldreförvaltningen har dessa båda studier
kompletterats med en genomgång av artiklar och rapporter om korttidsvård
samt analys av data avseende stadens korttidsvård.
De som kommer till ett korttidsboende befinner sig i en mycket skör
situation i livet. Korttidsplats för återhämtning, mobilisering och fortsatt
rehabilitering efter sjukhusvård utvecklades i hela landet efter Ädelreformen,
och har fortsatt att sedan dess öka i många kommuner. Bidragande
orsak har varit allt färre vårdplatser och kortare vårdtider i den
somatiska vården samt att fler har hemtjänst och färre bor i särskilt
boende.
Andelen äldre som erhåller korttidsplats varierar mellan landets
kommuner, liksom mellan Stockholms stadsdelar. I Göteborg hade 2008
1,4 procent av de som är 65 år och äldre korttidsplats, i Stockholm var andelen
0,25 procent.
I Stockholms stad har antalet som beviljas korttidsplats minskat sedan
2001. Det är främst korttidsvård efter sjukhusvistelse som minskat,
medan korttidsvård som anhörigstöd endast minskat marginellt. Minskningen
är tydligast för de äldre kvinnorna, under en fyraårsperiod 2007-
2010 minskade antalet kvinnor 85 år och äldre som fick korttidsplats från
186 till 82, för männen var minskningen från 116 till 88 personer.
Några skäl till att korttidsplats numera sällan erbjuds efter sjukhusvistelse
är att inte förlänga vårdkedjan och att staden inte erbjuder rehabilitering
inom korttidsvården eftersom rehabilitering i ordinärt boende är
ett landstingsansvar. Effekten kan dock bli att den äldre inte får
tillräcklig tid för att hämta krafter och träna så att hon kan klara sin
vardag bättre själv. Mycket talar för att en ytterligare tids vård för vissa
2
äldre kan vara kostnadseffektiv för samhället och innebära ökad trygghet
för den äldre. Resultaten från den randomiserade studien på Södermalm
tyder bl.a. på
Interventionsgruppen förbättrade sin rörelseförmåga i genomsnitt mer än
de som skrevs ut till hemmet
Andelen som minskade sitt vårdberoende var större i interventionsgruppen
jämfört med dem som skrevs ut till hemmet
Indexvärdet för den hälsorelaterade livskvaliteten ökade för interventionsgruppen,
för dem som skrevs ut direkt till hemmet var den nästan
oförändrad (statistiskt signifikant skillnad).
Signifikant större förbättring när det gäller oro/nedstämdhet samt förmågan
att klara huvudsakliga aktiviteter bland de äldre som fick korttidsplats.

Inga skillnader i kostnad för äldreomsorg (korttidsplatsen inräknad!).
Tydlig tendens till att äldre som hade fått korttidsvård blev inlagda på
sjukhus i mindre utsträckning under ett år efter utskrivning jämfört med
de äldre som skrevs direkt ut till hemmet.
Tydlig tendens till en lägre dödsrisk under ett års tid efter utskrivning
bland äldre som hade fått korttidsvård.
Det blev således inte dyrare för interventionsgruppen, som fick korttidsplats,
än för gruppen som inte lottades att få den insatsen, däremot blev
det bättre för interventionsgruppen i flera avseenden.
En form som nästan försvunnit i Stockholms stad är korttidsplats i
väntan på plats i vård- och omsorgsboende. Detta skäl till att bevilja korttidsplats
har kritiserats bl.a. av Socialstyrelsen.
Korttidsvården har en viktig roll genom att ge anhöriga avlastning. En
förutsättning för att korttidsvården ska vara en fungerande avlastning för
den anhörige är att den har ett socialt innehåll i vardagen och att den
anhörige också uppmärksammas. Pensionat Hornskroken och Kinesen i
Stockholm är goda exempel. Korttidsboende med denna inriktning måste
fokusera både på den som vistas på korttidsplatsen och den anhörige.
Korttidsvård kan också användas som sviktplats. Det saknas statistik för
denna vårdform, varför det är svårt att bedöma i vilken utsträckning den
utnyttjas så. I Stockholms län finns möjlighet till direktinlägg på geriatrisk
klinik. Det kan finnas skäl att följa upp om korttidsplats skulle
kunna användas när behovet främst är att få vila upp, äta och återhämta
kraft genom god omvårdnad och den geriatriska platsen när det krävs mer
av medicinsk behandling och/eller rehabilitering.
3
Vård i livets slutskede är i Stockholms stad ovanligt i korttidsvården.
Staden saknar korttidsenheter med palliativ inriktning. I stället erbjuds
plats på vård- och omsorgsboende, vilket inte är helt adekvat i den livsfasen.

Beskrivningarna av vardagen på korttidsboendet andas ofta innehållslöshet,
torftighet både i det sociala innehållet och i boendemiljöerna. Det
saknas alltför ofta tydliga beställningar från biståndshandläggaren vad
som är syftet med vistelsen, och genomförandeplaner som visar vad korttidsvården
ska kunna ge. För att korttidsvården ska kunna utvecklas och
få den roll den kan ha behövs tydlighet i beställningen till korttidsvården,
tydlighet i biståndsbeslutet och tydliga genomförandeplaner hos utföraren.

För att detta ska bli möjligt måste korttidsvården få mer renodlade uppdrag,
med inriktning på t.ex. svikt, rehabilitering, avlösning och vård i
livets slutskede. Det krävs mer specialisering, inte att allt blandas på
samma enhet. Viktigt är också att inte blanda personer med demenssjukdom
med dem som är kognitivt klara.

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

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.

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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.

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

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

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

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.

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

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

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.

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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].

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

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.

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.

Att hantera vardagen - en utbildning som stöd för anhörigvårdare, ÄO FoU-rapport 2007:1. E. Johansson and K. Renblad

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

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

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.

En arbetstagare har rätt till ledighet från sin anställning av trängande familjeskäl som har samband med sjukdom eller olycksfall och som gör arbetstagarens omedelbara närvaro absolut nödvändig

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

Akademisk avhandling

The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life.

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

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

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

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.

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

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

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

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

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.

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

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

Doktorsavhandling

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

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.

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

Positive parenting 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.

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.

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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.

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.

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

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.

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

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

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

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

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

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

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

The definition of 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

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

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

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

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

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

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

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

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

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

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

The 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.

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

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.

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

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

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

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.

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.

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

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

The 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.

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

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

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

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

Design A single, blind, randomised controlled trial.

Setting Stroke rehabilitation unit.

Subjects 300 stroke patients and their care givers.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Uppföljningen visar också följande:

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

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.

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.

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.

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Abstract

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

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

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

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

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

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

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

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

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

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

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

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

Material för diskussionsgrupper kring e-tjänster och ny teknik för anhöriga. Kanske är du anhörigkonsulent, vårdlärare eller anhörig och vill starta en studiecirkel? Genom inspirationsmaterialet får du lära dig mer om ny teknik och e-tjänster och diksutera frågor som är aktuella i det läge som du eller din organisation är i.

Denna kunskapsöversikt ger en bred beskrivning av några kunskapsområden när det gäller anhörigomsorg, äldre och etnicitet med hjälp av såväl svensk som internationell forskning. I boken presenteras exempelvis hur det är att uppleva språkproblem i mötet med den offentliga äldreomsorgen samt frågor och effekter kring förväntningar

Kommuner & landsting

Anhörigstöd ska kännetecknas av individualisering, flexibilitet och kvalitet. Men är det anhörigstöd som enligt lag ska erbjudas, ett anhörigstöd för alla?

Med rapporten Ett anhörigstöd för alla? Erfarenheter av att vara anhörig till en person med kognitiv sjukdom – med fokus på utrikes födda vill Migrationsskolan synliggöra anhörigas röst och har i en regional kartläggning tittat närmare på om det anhörigstöd som erbjuds i de skånska kommunerna är ett anhörigstöd för alla.

Rapporten vänder sig till yrkesverksamma som i sitt arbete möter anhöriga till en närstående med kognitiv sjukdom. Med rapporten vill författarna ge läsaren en möjlighet att reflektera över anhörigas erfarenheter av anhörigstöd.

Migrationsskolan är en del av Kunskapscentrum demenssjukdomar och har ett regionalt uppdrag i Region Skåne. Uppdraget består i att arbeta för jämlik och säker demensvård oavsett bakgrund.

Ett barn är oss fött, är det vackraste uttrycket för att man kan hysa hopp och tillit till världen, enligt Hanna Arendt. Arendt beskrev hur varje människas födelse är början på någonting nytt, något som också vill framhållas med avhandlingens titel. Titeln markerar också det faktum att det barn som föds med en funktionsnedsättning på ett särskilt vis blir samhällets barn. Syftet med föreliggande studie är att beskriva upplevelsen av att bli förälder när barnet har en funktionsnedsättning. Utgångspunkten är tagen i ett relationellt perspektiv. De teoretiker som fått ge sina bidrag är, förutom Arendt, Buber, Stern och Winnicott. I analysen av berättelserna har inspiration hämtats från Ricoeur i en hermeneutisk fenomenologisk ansats. De teman som avhandlingen utgår ifrån är möten och dessa är mötet med barnet, mötet med omgivningen och mötet med professionella. 30 föräldrar, 19 mödrar och 11 fäder, har berättat om sina upplevelser av föräldraskapet. Beskedet om barnets funktionsnedsättning upplevdes kaotiskt och omvälvande av föräldrarna. Många starka och olika känslor kom i omlopp. Föräldrarna kunde uppleva sig vara utkastade från världen och att framtiden i ett slag togs ifrån dem. Framtiden blev det som oroade och den fråga som utmejslades var: Hur kan man leva sitt liv? Många professionella blev inblandade kring barnet, vilket både kunde bli till nackdel och fördel för familjen. Professionellas attityd och uttalanden om barnet hade stor påverkan och följde över tid. Samtidigt som barnet på ett sätt blev samhällets barn hade föräldrarna en känsla av att de måste föra en kamp för sitt barn i samhället, en sorts kärlekskamp som gällde att barnet skulle bli betraktad efter sina förutsättningar. En kärlekskamp hade också inledningsvis gällt för en del föräldrar i deras egen inre kamp i att kunna närma sig barnet. Därmed blev kärlekskampen dubbel. I det nya trevande föräldraskapet handlade det om att finna sin plats i världen och att finna ett sätt att vara. I samvaron med barnet konkurrerade två olika varanden under den första tiden, att vara och att göra . Med tiden kunde sorgen över beskedet separeras från barnet och det blev barnet som hjälpte till att bära sorgen över beskedet. I avhandlingen diskuteras föräldrarnas situation, med avstamp i de frågeställningar som Stern menar att föräldrar har att hantera. Även hur lek och träning förhåller sig till varandra diskuteras, liksom berättandets betydelse och professionellas ansvar. Med föräldrarnas berättelser som grund föreslås hur ett specialpedagogiskt perspektiv kan konkretiseras och hur några specialpedagogiska uppgifter därmed kan urskiljas. - See more at: http://www.skolporten.se/forskning/avhandling/ett-barn-ar-oss-fott-att-bli-foralder-nar-barnet-har-en-funktionsnedsattning-ett-beskrivande-och-tolkande-perspektiv/#sthash.VTWKd0g6.dpuf

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.

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.

We compared neural activation detected by magnetoencephalography (MEG) during tactile presentation of words and non-words in a postlingually deaf-blind subject and six normal volunteers. The left postcentral gyrus, bilateral inferior frontal gyri, left posterior temporal lobe, right anterior temporal lobe, bilateral middle occipital gyri were activated when tactile words were presented to the right hand of the deaf-blind subject. This set of activated regions was not observed in the normal volunteers, although activation of several combinations of these regions was detected. Positron emission tomography confirmed the location of the MEG-activated areas in the deaf-blind subject. Our results demonstrated that the deaf-blind subject is heavily involved in interpreting tactile language by enhancing cortical activation of cognitive and semantic processing. © 2004 Lippincott Williams & Wilkins.

Recent studies have found short-term adrenocortical benefits of early interventions for at-risk children. The current study evaluated the effects of the Family Bereavement Program on cortisol levels six years after the program. Parentally bereaved children were randomly assigned to the 12-week preventive intervention (n=78) or a self-study control (n=61) condition. Six years later (mean age 17.5), salivary cortisol levels were measured before and after a conflict discussion task conducted in late afternoon/early evening. The intervention group had significantly higher cortisol levels across the task compared to the control group, and lower cortisol was associated with higher externalizing symptoms. The group effect did not differ by age at the time of death, and the group difference remained significant after adjustment for pre-intervention mental health and current mental health symptoms. Results suggest that a family-focused intervention for parentally bereaved youth may have prevented the development of attenuated cortisol secretion suggestive of dysregulation and associated with externalizing problems.

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.

The study compared the effect of couples-based vs individual-based therapy for men who entered outpatient substance abuse treatment on the psychosocial functioning of children in their homes. Men were randomly assigned to (1) behavioral couples therapy (BCT), (2) individual-based treatment (IBT) or (3) couples-based psychoeducational attention control treatment (PACT). For both children of alcohol (N=71) and drug-abusing men (N=64), parents' ratings of children's psychosocial functioning was higher for children whose fathers participated in BCT at posttreatment and at 6- and 12-mo follow-up than for children whose fathers participated in IBT or PACT. BCT resulted in greater improvements in parents' dyadic adjustment and fathers' substance use. Thus, couples-based intervention that addresses both issues may have greater benefits for children in these homes. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

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.

Background Affective and reciprocal interactions with others are essential for persons with profound intellectual and multiple disabilities (PIMD), but it is a challenge to assess their quality. This study aimed to investigate the usefulness of instruments from parent-infant research to evaluate these interactions. Method Eighteen videotaped staff-client interactions were coded with the Emotional Availability Scales, the Maternal/Child Behavior Rating Scales, and the Revised Erickson Scales. Results The scales could generally be applied to persons with PIMD and substantial interobserver agreement was found. The tools' subscales appeared to be distinct but there was also evidence that they measure an overarching construct. Client and staff interactive behaviours were highly related. Convergent validity was demonstrated by strong correlations between theoretically related dimensions. An acceptable range in scores, a ceiling-effect, and relative high mean scores occurred. Conclusions The instruments' applicability and usefulness was demonstrated in this study, which offers directions for future research and intervention. © 2011 Blackwell Publishing Ltd.

Background According to new Norwegian laws, mental healthcare for adults are obligated to assess all patients who are parents and to act on their children's needs. This article describes the study protocol of implementing the interventions Family Assessment and Child Talks for children of patients in the adult psychiatry of the University Hospital of Northern Norway. The project is designed to evaluate the process of changes in clinical practice due to the implementation of two interventions. The interventions to be implemented are a standardised Family Assessment Form and the intervention called Child Talks. The family assessment form is an intervention to identify children of mentally ill parents and their needs. The intervention Child Talks is a health-promoting and preventive intervention where the mental health workers talk with the family about the situation of the children and their needs.

Methods/design There are two groups of participants in this study: (1) mental health workers in the clinic (N=220) and (2) patients who are parents (N=200) receiving treatment in the clinic. (1) In the evaluation of clinical practice, the authors use a pre-test, post-test and 1-year follow-up design. At pre-test, the authors evaluate status quo among mental health workers in the clinic regarding knowledge, attitudes, collaborative routines and clinical practice related to families with parental mental illness. After the pre-test is finished, the project move on to implement the interventions Family Assessment Form and Child Talks in the clinic. At post-test and 1-year follow-up, the authors evaluate the impact of implementing the Family Assessment Form in terms of how many children were identified and offered Child Talks in the clinic or referred to other services for additional support. (2) In the evaluation of parents/patients experience with the interventions, the authors use a pre-test post-test design. To identify children of mentally ill patients, the authors collect data on demographical variables for the patient and the child at pre-measures, as well as data on parental competence (PSOC) and parental concerns (PEDS) about their children. At post-measures, the authors evaluate the impact of the intervention in terms of user satisfaction, as well as changes between pre- and post-measures on parental competence (PSOC) and parental concerns (PEDS) about their children.

Discussion The implication of implementing new interventions to safeguard children of mentally ill patients and the limitation of not measuring child development directly are discussed.

This study investigated the effectiveness of a cognitive behavioral group program for spouses of stroke patients. The program consists of 15 bi-monthly 112h sessions. The goal of the intervention is to reduce the prevalence of mental disorders and burnout among care-giving spouses of stroke patients. The sample (stroke patients and their spouses) consisted of one intervention group (n=38 couples) and two different control conditions, those receiving informational support (n=35 couples) and those receiving standard care (n=51 couples). We used the following instruments to measure spouses' mental health and quality of life: Beck Anxiety Inventory (BAI), Beck Depression Inventory (BDI), WHO Quality of Life Questionnaire. Measurements were taken before the intervention (Time 1), directly following the intervention (Time 2) and 6 months after Time 2 (Time 3). Several regression analyses allowed for examination of the short-term and long-term effects of the intervention. The spouses' participation in the intervention program was associated with significant short-term changes in care-giving spouses' quality of life and with long-term changes in their quality of life and depression. The presented multi-component intervention appears to have an immediate effect on care-giving spouses' quality of life. In contrast, the intervention-related changes in more resistant mental-health-related variables did not appear until after a latent stage in the later post-intervention phase.

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16–25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.

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

Parental misuse of drugs or alcohol is recognised to be an issue for a high proportion of families to known social services, and for many children who enter care. However, there is limited research on what is effective in working with such families. This article reports on an evaluation of an Intensive Family Preservation Service (named 'Option 2') aimed at families in which parents misuse substances and children are considered at risk of entering care. The study used mixed methods. A quasi-experimental element compared solely data relating to care entry (e.g. how long children spent in care and its cost) for Option 2 children (n = 279) and a comparison group of referrals not provided with the service (n = 89) on average 3.5 years after referral. It found that about 40 per cent of children in both groups entered care, however Option 2 children took longer to enter, spent less time in care and were more likely to be at home at follow-up. As a result, Option 2 produced significant cost savings. A small-scale qualitative element of the study involved interviews with 11 parents and seven children in eight families. The findings suggested that Option 2 was a highly professional and appreciated service. For some families it achieved permanent change. For others, particularly those with complex and long-standing problems, significant positive changes were not sustained. The implications for services designed to prevent public care, particularly where there are substance misuse issues, are discussed and recommendations for policy and evaluation made. Copyright © 2008 John Wiley & Sons, Ltd.

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".

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.

Doktorsavhandling

Introduction: Today's multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with "cultural" backgrounds other than their own. The world's population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual's lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the "old" to the "new" way of life and from a life without dementia to a life with dementia involve making sense of life's changes. Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives' decisions to end caregiving at home, and Iranian families' and relatives' attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of "home". Method: This thesis is based on more than one year's fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography. Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people. Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home. In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia's personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in. Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents' sociocultural background, generational differences and incoherence, aligned with staff members' different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person's native language was not enough to claim that they were actually communicating. Family caregivers' decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person's autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents' daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them. The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, "home", was a place to be and to live.

Using data from a sample of 169 patients, this study evaluates the acceptability and feasibility of telehealth videoconferencing for preclinic assessment and follow-up in an interprofessional memory clinic for rural and remote seniors. Patients and caregivers are seen via telehealth prior to the in-person clinic and followed up at 6 weeks, 12 weeks, 6 months, 1 year, and yearly. Patients are randomly assigned to in-person (standard care) or telehealth for the first follow-up, then alternating between the two modes of treatment, prior to 1-year follow-up. On average, telehealth appointments reduce participants' travel by 426 km per round trip. Findings show that telehealth coordinators rated 85% of patients and 92% of caregivers as comfortable or very comfortable during telehealth. Satisfaction scales completed by patient-caregiver dyads show high satisfaction with telehealth. Follow-up questionnaires reveal similar satisfaction with telehealth and in-person appointments, but telehealth is rated as significantly more convenient. Predictors of discontinuing follow-up are greater distance to telehealth, old-age patient, lower telehealth satisfaction, and lower caregiver burden.

This article reports on a program evaluation of the Betty Ford Center Children's Program, a program specifically designed for the children of substance abusers. Approximately 160 participating children (aged 7–12) were evaluated at pretest and posttest using a comprehensive psychological battery; a subsample of 50 children participated in a follow-up telephone interview 6 months later. Results showed that children of substance abusers benefit from brief, intensive program efforts that serve their special circumstances and highlight the important role social workers and other clinicians have in helping children reevaluate how they are impacted by their parent's addiction.

This article reports on a program evaluation of the Betty Ford Center Children's Program, a program specifically designed for the children of substance abusers. Approximately 160 participating children (aged 7–12) were evaluated at pretest and posttest using a comprehensive psychological battery; a subsample of 50 children participated in a follow-up telephone interview 6 months later. Results showed that children of substance abusers benefit from brief, intensive program efforts that serve their special circumstances and highlight the important role social workers and other clinicians have in helping children reevaluate how they are impacted by their parent's addiction.

Akademisk Avhandling

Aim: The overall aim of this thesis was to describe and explore everyday life in families
with a child with ADHD and public health nurses' role in relation to these families.
Methods: An explorative and descriptive design with qualitative and quantitative
methods was used. In Study I, data was collected with individual interviews with nine
parents, and analyzed using phenomenology. In Study II, data was collected with
individual interviews with 17 family members, and analyzed with phenomenography. In
Study III, data was collected with a questionnaire responded by 265 parents, and analyzed
with statistics. In Study IV, data was collected with group- and individual interviews with
19 public health nurses, and analyzed with phenomenography.
Main findings: The families' everyday life was influenced by living in unpredictability,
though they were striving for predictability. The experience of being a parent was
described as contending and adapting every day, like windsurfing in unpredictable waters.
The parents were balancing between maintaining self and parenthood (I). The family tried
to safeguard a functioning family in managing everyday life and developing special skills,
both within the family and the society. They fought for acceptance and inclusion, in
relation to the social network and professionals. The siblings were both agitators and
diplomats, and their social life was affected (II). Cooperation with professionals was
cumbersome and a relationship built on openness, support, trust and guidance was
essential for cooperation (I, II). Parents' sense of coherence, children's behavior, support
from social networks and community health services had all an impact on family
functioning. In families with children being medicated for ADHD, parents reported less
behavioral problems in their child, better family functioning and more social support than
parents with non-medicated children (III). The PHNs described their role as both a
peripheral and a collaborating partner and they asked for guidelines and multidisciplinary
collaboration (IV).
Conclusions: Everyday life in families with ADHD is both demanding and giving.
Acceptance and support from the social network and supervision from professionals are
essential. The public health nurse is in a unique position to support and supervise these
families.

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.

The overall aim of this thesis was to generate knowledge of research utilization of registered nurses (RNs) and other healthcare personnel in the care of older people. The specific objectives for the four included papers were: (I) to describe the perception of healthcare personnel with respect to research utilization and to compare research use between professional groups, (II) to identify determinants of research utilization, (III) to describe RNs self-reported research use in the care of older people and to examine the associations between research use and factors related to the communication channels, the adopter and the social system and (IV) to describe RNs perceptions of barriers to and facilitators of research utilization and to examine the validity of the BARRIERS Scale in relation to research use, i.e. the capacity of the Scale to discriminate perceptions of barriers between research users and non-research users. Method: A descriptive correlational survey design was used. The first study (Papers I-II) was performed in one municipality. Seven units within rehabilitation (n=1), nursing homes (n=2) and group dwellings (n=4) were selected. All healthcare staff (n=132) were asked to participate. The response rate was 67% (n=89). The second study (Papers III-IV) was conducted in eight municipalities. In these municipalities all RNs (n=210) working in the care of older people were invited. The response rate was 67% (n=140). Five questionnaires were used to collect data: the Research Utilization Questionnaire (Papers I-IV), the Creative Climate Questionnaire (Paper II), the BARRIERS Scale (Paper IV), a Demographic Data Questionnaire (Papers I-IV) and an Organizational Data Questionnaire (Paper III). Data were analyzed using descriptive and inferential statistics. The PARIHS framework and Rogers theory Diffusion of Innovations were used to interpret the findings. Results: The healthcare staff reported positive attitudes to research but low use of research findings. Limited access to research-related resources and lack of support from unit managers and colleagues were reported. RNs and rehabilitation professionals (RPs) reported more research use than enrolled nurses (ENs) and nurse aides (NAs). Furthermore, the RNs and RPs reported better access to resources and perceived managers as more supportive as compared with the ENs and NAs. RNs with access to research and development resources at the municipal level reported more use of research findings than RNs without such resources. Four determinants of research use among staff were identified: positive attitudes to research and seeking research that is related to clinical practice (individual determinants) and access to research findings at the workplace and support from the unit manager (organizational determinants). In the RN group three determinants of research use were revealed: access to research findings (the communication channels), attitudes to research and having a nursing program at the university level (the adopter). The barriers to research utilization reported by the RNs were predominantly related to characteristics of the organization and the presentation and accessibility of research. More than 80% of the RNs reported a lack of knowledgeable colleagues, a lack of adequate facilities for implementation and a lack of easy access to relevant research papers. Research users among the RNs reported fewer barriers concerning their own attitudes and skills, presentation of research and the quality of research than non-research users. No significant difference was found between research users and non-research users regarding perceptions on organizational barriers. This thesis not only reveals the needs but also the potential of increasing research use in the care of older people. The healthcare staff reported a lower degree of research use and the RNs reported more barriers to research utilization compared with nurses in earlier studies conducted in hospitals. There is an urgent need to develop strategies to enhance research use by focusing on the determinants and barriers identified in this thesis, which include access to information sources, interventions for increasing knowledge on research methodology and caring science, adequate training in the use of information sources and a supportive organization. The BARRIERS Scale appears to be useful in identifying some types of barrier except organizational barriers. Identified barriers, however, were general and wide-ranging, making it difficult to design specific interventions. Based on the present findings, it should not be a utopia to provide older people with evidence-based care. The responsibility for such an objective is shared by many actors in the healthcare and university systems. To achieve this goal allocated resources have to be used strategically.

The overall aim of this thesis was to generate knowledge of research utilization of registered nurses (RNs) and other healthcare personnel in the care of older people. The specific objectives for the four included papers were: (I) to describe the perception of healthcare personnel with respect to research utilization and to compare research use between professional groups, (II) to identify determinants of research utilization, (III) to describe RNs self-reported research use in the care of older people and to examine the associations between research use and factors related to the communication channels, the adopter and the social system and (IV) to describe RNs perceptions of barriers to and facilitators of research utilization and to examine the validity of the BARRIERS Scale in relation to research use, i.e. the capacity of the Scale to discriminate perceptions of barriers between research users and non-research users. Method: A descriptive correlational survey design was used. The first study (Papers I-II) was performed in one municipality. Seven units within rehabilitation (n=1), nursing homes (n=2) and group dwellings (n=4) were selected. All healthcare staff (n=132) were asked to participate. The response rate was 67% (n=89). The second study (Papers III-IV) was conducted in eight municipalities. In these municipalities all RNs (n=210) working in the care of older people were invited. The response rate was 67% (n=140). Five questionnaires were used to collect data: the Research Utilization Questionnaire (Papers I-IV), the Creative Climate Questionnaire (Paper II), the BARRIERS Scale (Paper IV), a Demographic Data Questionnaire (Papers I-IV) and an Organizational Data Questionnaire (Paper III). Data were analyzed using descriptive and inferential statistics. The PARIHS framework and Rogers theory Diffusion of Innovations were used to interpret the findings. Results: The healthcare staff reported positive attitudes to research but low use of research findings. Limited access to research-related resources and lack of support from unit managers and colleagues were reported. RNs and rehabilitation professionals (RPs) reported more research use than enrolled nurses (ENs) and nurse aides (NAs). Furthermore, the RNs and RPs reported better access to resources and perceived managers as more supportive as compared with the ENs and NAs. RNs with access to research and development resources at the municipal level reported more use of research findings than RNs without such resources. Four determinants of research use among staff were identified: positive attitudes to research and seeking research that is related to clinical practice (individual determinants) and access to research findings at the workplace and support from the unit manager (organizational determinants). In the RN group three determinants of research use were revealed: access to research findings (the communication channels), attitudes to research and having a nursing program at the university level (the adopter). The barriers to research utilization reported by the RNs were predominantly related to characteristics of the organization and the presentation and accessibility of research. More than 80% of the RNs reported a lack of knowledgeable colleagues, a lack of adequate facilities for implementation and a lack of easy access to relevant research papers. Research users among the RNs reported fewer barriers concerning their own attitudes and skills, presentation of research and the quality of research than non-research users. No significant difference was found between research users and non-research users regarding perceptions on organizational barriers. This thesis not only reveals the needs but also the potential of increasing research use in the care of older people. The healthcare staff reported a lower degree of research use and the RNs reported more barriers to research utilization compared with nurses in earlier studies conducted in hospitals. There is an urgent need to develop strategies to enhance research use by focusing on the determinants and barriers identified in this thesis, which include access to information sources, interventions for increasing knowledge on research methodology and caring science, adequate training in the use of information sources and a supportive organization. The BARRIERS Scale appears to be useful in identifying some types of barrier except organizational barriers. Identified barriers, however, were general and wide-ranging, making it difficult to design specific interventions. Based on the present findings, it should not be a utopia to provide older people with evidence-based care. The responsibility for such an objective is shared by many actors in the healthcare and university systems. To achieve this goal allocated resources have to be used strategically.

Parental death is one of the most traumatic events that can occur in childhood, and several reviews of the literature have found that the death of a parent places children at risk for a number of negative outcomes. This article describes the knowledge base regarding both empirically-supported, malleable factors that have been shown to contribute to or protect children from mental health problems following the death of a parent and evidence-based practices to change these factors. In addition, nonmealleable factors clinicians should consider when providing services for children who have experienced the death of a parent are reviewed.

Parental death is one of the most traumatic events that can occur in childhood, and several reviews of the literature have found that the death of a parent places children at risk for a number of negative outcomes. This article describes the knowledge base regarding both empirically-supported, malleable factors that have been shown to contribute to or protect children from mental health problems following the death of a parent and evidence-based practices to change these factors. In addition, nonmealleable factors clinicians should consider when providing services for children who have experienced the death of a parent are reviewed.

The long-standing divide between research and practice in clinical psychology has received increased attention in view of the development of evidence-based interventions and practice and public interest, oversight, and management of psychological services. The gap has been reflected in concerns from those in practice about the applicability of findings from psychotherapy research as a guide to clinical work and concerns from those in research about how clinical work is conducted. Research and practice are united in their commitment to providing the best of psychological knowledge and methods to improve the quality of patient care. This article highlights issues in the research- practice debate as a backdrop for rapprochement. Suggestions are made for changes and shifts in emphases in psychotherapy research and clinical practice. The changes are designed to ensure that both research and practice contribute to our knowledge base and provide information that can be used more readily to improve patient care and, in the process, reduce the perceived and real hiatus between research and practice.

Background Individuals with severe to profound and multiple intellectual disability (S-PMID) tend to function at the earlier stages of communication development. Variable and highly individual means of communicating may present challenges to the adults providing support in everyday life. The current study aimed to examine the communication interface between students with S-PMID and educational staff. Method An in-depth, observational study of dyadic interaction in a class within the secondary part of a special school was conducted. The designated educational level was Key Stage 3 under the National Curriculum of England, which is typically for children from age 11 to 14 years attending a state school. There were four student-teacher dyads in the class. The students had multiple impairments with severely limited communication skills. Video capture of dyadic interaction was conducted during five English lessons and sampled to 2.5 min per dyad per lesson. The video footage was transcribed into standard orthography, detailing the vocal and non-vocal aspects. A coding framework guided by the principles of structural-functional linguistics was used to determine the nature of dyadic interaction, comprising linguistic moves, functions and communicative modalities. The relative contributions of student and teacher to the interaction were examined. Results Significant differences were found between the students and educational staff on the majority of the measures. The teachers dominated the interaction, occupying significantly more turns than the students. Teacher turns contained significantly more initiations and follow-up moves than the students, who used more response moves. Teacher communication mainly served the functions of requesting and information giving. Feedback and scripted functions were also significantly greater among teacher turns, with only limited occurrence among the students. Self- or shared-expression was greatest among the students. The modalities of speech, touch, singing and objects were used by the teachers for the purpose of communication, whereas vocalisation and gesture were used by the students. Conclusions Despite differences in the availability of communication skills, both student and teacher were able to make their respective contributions to the interaction during classroom activity. Features of the student-teacher interface retained critical features seen in studies of more able individuals with intellectual disability. Scaffolding provided by teachers appears to be relevant to the communicative contributions of individuals functioning at the earliest stages of communication. The coding framework based on structural-functional linguistics provides some new potential for examining and enhancing the communication interface between individuals with S-PMID and the people who support them.

BACKGROUND AND PURPOSE:
There is a growing consensus among healthcare researchers that, within the field of family caregiving, cost-effectiveness research is needed to determine which programs have the greatest benefit for family members. This study examines the cost per caregiver of an intervention designed to improve the quality of life of spousal caregivers of stroke survivors.
METHOD:
Cost data from the CAReS study were analyzed to determine the cost of the intervention per caregiver.
RESULTS:
The cost of the intervention per caregiver was $2,500 at the 2009 median wage estimate. It was $1,700 at the 2009 10 percentile wage estimate and $3,500 at the 2009 90 percentile wage estimate.
CONCLUSIONS:
This study provides a prototype cost analysis from which researchers can build. In future analyses, costs should be tracked at a participant level so uncertainty can be calculated using the bias-corrected percentile bootstrapping method and plotted to calculate cost-effectiveness acceptability curves, enabling cost-effectiveness comparisons between interventions.

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 (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.

Avhandling
Svenska

The aim of this thesis was to explore existential loneliness from the perspective of significant others, to contrast their perceptions with frail older people's experiences and to describe significant others' and family care advisors' views on existential support. This thesis is part of a larger research project about existential loneliness among frail older people, the LONE study. The thesis embraces three qualitative and one quantitative study. A total of 29 significant others, 15 frail older people and 120 family care advisors participated in the studies. The significant others were husbands, wives, daughters, sons, other relatives and friends to frail older people. The concept 'frail older people' was defined as older persons (≥ 75 years old) dependent on long-term health- or social care. The qualitative studies were based on multistage focus-group interviews (study I) and individual interviews (studies II and III). The quantitative study (IV) had a cross-sectional design and was based on a questionnaire specifically developed for the current study. Different methods to analyse data were used; hermeneutics (study I), content analysis (study II), a case study with thematic analysis (study III) and descriptive statistics (study IV). Findings from the four studies show that existential loneliness emerges when: 1) Longing for, but also striving for, a deeper feeling of connectedness, 2) Being in, but also enduring, an unwanted separation, and 3) Not finding, but still trying to recreate meaning. This thesis also shows that existential loneliness is often experienced in so-called limit situations in life and arises in difficult choices related to close relationships, in connection with experiences of meaninglessness and in the absence of connection to something or someone. The results show that existential loneliness emerges in the process of balancing between what was and what is to come in the unknown future. Significant others navigate themselves, and sometimes together with the older person, through an unfamiliar existence that makes them feel ambivalent about the de-cisions they have previously made and the decisions they need to make in the future, while also doubting the meaning in their current situation. Existential support should mainly focus on transition phases and on relational aspects. Person-centredness can be a way to make the existential needs of significant others and older people visible and to provide support based on their needs.

Investigated the dimensions of caregiving and morbidity in caregivers of people with first-episode psychosis. Caregivers (aged 16–68 yrs) of 40 people with first-episode psychosis (aged 18–39 yrs) were interviewed at home about their experience of caregiving, coping strategies, and distress. Results found that caregivers used emotional and practical strategies to cope with participants' negative symptoms and difficult behaviors and experienced more worry about these problems. They increased supervision when the participants displayed difficult behaviors. 12% of caregivers were suffering from psychiatric comorbidity as defined by the General Heath Questionnaire (D. P. Goldberg and V. F. Hillier, 1979). Those living with the participant had more frequent visits to their general practitioner. It is concluded that at first-episode psychosis caregivers are already having to cope with a wide range of problems and are developing coping strategies. Caregivers worried most about difficult behaviors and negative symptoms in participants. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Abstract
The aim was to obtain an understanding of the experience in everyday life of being a sibling when a brother or sister is receiving treatment for a cancer disease or has completed treatment. In order to illuminate the experience of the siblings themselves a phenomenological-hermeneutic method was used. Ten siblings were asked, in the form of a broad-based, open question, to tell about their experience of being the sibling of a brother or sister in this situation. There was an awareness of sibling-ship as a special relation since the brother or sister had got cancer. This feeling was very strong and close, and when needed the sibling admitted a protective and advocacy role. The siblings felt difficulties to always be loyal with the brother or sister needs and demands from other interests. They lived a new life and periods of ups and down following the condition of the brother or sister. Everyday life varied from joy to a life filled with worries and anxiety. Siblings experienced feelings of an existential nature, such as quality of life and death.

Aim: The overall aim of this thesis was to illuminate experiences of relatives of persons with severe mental illness, and their need for support from formal care. Furthermore, to illuminate nursing support of relatives of persons with severe mental illness.
Methods: A mixed methods design was used. In study I, data was collected with a questionnaire responded by 226 relatives and analysed with statistics. In study II, data was gathered with interviews with a strategic sample of 18 relatives, analysed with phenomenography. Study III gathered data from 216 relatives using open-ended questions in the questionnaire (I), analysed with qualitative content analysis. In study IV, data was collected by means of focus-group interviews with 4 groups of nurses, working in mental healthcare and analysed with phenomenography.
Main findings: The relatives experienced that their lives were intertwined with the life of their severely mentally ill next of kin. The relatives experienced burden and a poor health, and there were associations between burden and health (I). The relatives had to balance between multiple concerns and make choices on behalf of others and themselves, constantly struggling between opposing feelings and between reflections (II). Relatives' encounters with mental health personnel were mainly negative, although some had positive experiences. They strived for involvement in mental healthcare for the sake of their severely mentally ill next of kin, and wanted inclusion and support for their own sake, but mostly felt left alone with straining but inescapable responsibilities (III). The nurses conceived that their responsibility was first and foremost the patient and to develop an alliance with him or her. The nurses often felt they had to exclude relatives, but were sometimes able to support them (IV).
Conclusions: Relatives' lives are intertwined with the life of their severely mentally ill next of kin. Relatives' overall demanding life situation means that the mental health services must involve relatives for the sake of the severely mentally ill person but also include them for their own sake. They need practical and emotional support. Guidelines must be designed to address relatives' needs, and support must be adapted to the individual relative.

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.

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.

children of psychiatric patients;mental health services;offspring at risk;parental mental illness;qualitative methods;resilience
Children of mentally ill parents have increased rates of psychopathology and reduced adaptive functioning. However, there are very few studies examining the subjective experiences of those children and their opinions concerning their previous contact with psychiatric services. This study followed up a group of children of former psychiatric inpatients by sending them a questionnaire asking about their experiences. Thirty-six individuals responded. Answers were analysed qualitatively by using manifest content analysis. Participants reported negative experiences and lack of information and support from psychiatric care. They had wanted more explanations and more support for themselves. Quantitative data are used to establish the significance of the results.

Children of mentally ill parents have increased rates of psychopathology and reduced adaptive functioning. However, there are very few studies examining the subjective experiences of those children and their opinions concerning their previous contact with psychiatric services. This study followed up a group of children of former psychiatric inpatients by sending them a questionnaire asking about their experiences. Thirty-six individuals responded. Answers were analysed qualitatively by using manifest content analysis. Participants reported negative experiences and lack of information and support from psychiatric care. They had wanted more explanations and more support for themselves. Quantitative data are used to establish the significance of the results.

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

Aims and objectives.  The aims of the present study were to describe losses narrated by persons afflicted with severe chronic physical illness and to identify the concomitant occurrence of chronic sorrow.

Background.  Reactions connected with repeated losses are referred to in the literature as chronic sorrow, which has recently been described in conjunction with chronic illness.

Design.  A qualitative study with an abductive approach of analysis, including both inductive and deductive interpretations.

Method.  The study is based on 30 persons of working age with average disease duration of 18 years. The average age was 51 years. All of the persons had personal assistance for at least three months because of considerable need for help in daily life due to physical disability. Each person was interviewed twice. There was also an independent assessment of the deductive results concerning chronic sorrow.

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.

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.

Very young non- or hardly-speaking children with severe disabilities need active guidance to stimulate interaction with their environment in order to develop their communicative and linguistic skills. Augmentative and alternative communication (AAC) systems can help this process, provided that they are tuned to this specific user group. LinguaBytes is a research programme, which aims at developing an interactive and adaptive educational toy that stimulates the language and communicative skills of multiple-handicapped children with a developmental age of 1-4 years. In this article we show which guidelines we consider essential for developing this tool. We have developed several concepts based on these guidelines, of which we elucidate Explorascope (E-scope). E-scope consists of a tangible toy-like interface that is adaptable to an individual child with respect to his or her cognitive, linguistic, emotional and perceptual-motor skills. A first user test shows that E-scope is promising and useful for this user group.

BACKGROUND: There is little investigation into what care older people access
during the last phase of their life and what factors enable access to care in
this group. Illuminating this from the perspective of the next of kin may provide
valuable insights into how the health and social care system operates with
reference to providing care for this vulnerable group. The behavioural model of
health services use has a wide field of application but has not been tested
conceptually regarding access to care from the perspective of the next of kin.
The aim of this study was to explore the care accessed by older people during the
last phase of their life from the perspective of the next of kin and to
conceptually test the behavioural model of health services use.
METHODS: The data collection took place in 2011 by means of qualitative
interviews with 14 next of kin of older people who had died in a nursing home.
The interviews were analysed using directed content analysis. The behavioural
model of health services use was used in deriving the initial coding scheme,
including the categories: utilization of health services, consumer satisfaction
and characteristics of the population at risk.
RESULTS: Utilization of health services in the last phase of life was described
in five subcategories named after the type of care accessed i.e. admission to a
nursing home, primary healthcare, hospital care, dental care and informal care.
The needs were illuminated in the subcategories: general deterioration, medical
conditions and acute illness and deterioration when death approaches. Factors
that enabled access to care were described in three subcategories: the
organisation of care, next of kin and the older person. These factors could also
constitute barriers to accessing care. Next of kin's satisfaction with care was
illuminated in the subcategories: satisfaction, dissatisfaction and factors
influencing satisfaction. One new category was constructed inductively: the
situation of the next of kin.
CONCLUSIONS: A bed in a nursing home was often accessed during what the next of
kin regarded as the last phase of life. The needs among older people in the last
phase of life can be regarded as complex and worsening over time. Most enabling
factors lied within the organisation of care but the next of kin enabled access
to care and contributed significantly to care quality. More research is needed
regarding ageism and stigmatic attitudes among professionals and informal
caregivers acting as a barrier to accessing care for older people in the last
phase of their life. The behavioural model of health services use was extended
with a new category showing that the situation of the next of kin must be taken
into consideration when investigating access to care from their perspective. It
may also be appropriate to include informal care as part of the concept of access
when investigating access to care among older people in the last phase of their
life. The results may not be transferable to older people who have not gained
access to a bed in a nursing home or to countries where the healthcare system

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)

Linköping University medical dissertations, 0345-0082 ; 895

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.

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.

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.
PinterestTwitter

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?

Denna bok ger grundläggande kunskap om psykisk traumatisering och flyktingars psykosociala situation i exil. Erfarenheter av behandling inom olika grenar av vård och socialtjänst med många illustrerande fallbeskrivningar ges stort utrymme i boken. Särskilda avsnitt ägnas rättsmedicinsk dokumentation, psykosomatik, tolkanvändning, flyktingkvinnor, sjukgymnastik, gruppterapi, familjeterapi, bildterapi, sluten psykiatrisk vård, frivilligarbete, tandvård, primärvård och förläggningssjukvård. Boken vänder sig till personal inom vården, socialtjänsten och frivilligorganisationerna som möter flyktingar i sitt arbete.

Denna bok ger grundläggande kunskap om psykisk traumatisering och flyktingars psykosociala situation i exil. Erfarenheter av behandling inom olika grenar av vård och socialtjänst med många illustrerande fallbeskrivningar ges stort utrymme i boken. Särskilda avsnitt ägnas rättsmedicinsk dokumentation, psykosomatik, tolkanvändning, flyktingkvinnor, sjukgymnastik, gruppterapi, familjeterapi, bildterapi, sluten psykiatrisk vård, frivilligarbete, tandvård, primärvård och förläggningssjukvård. Boken vänder sig till personal inom vården, socialtjänsten och frivilligorganisationerna som möter flyktingar i sitt arbete.

In the present interview study on a sample of 13 deaf-blind participants (eight Usher patients and five with other diagnoses), all but one with some remaining visual function and all but two with a pure-tone average (PTA) exceeding 100 dB HL, an instrument was developed to assess discovery and localization abilities (DILO), compensatory use of sensory information, emotional and cognitive aspects of communication, and the preferred use of technical aids. Both qualitative and quantitative data were collected, and it was found that (1) the importance of early discovery of events and persons is rated high, (2) vision ranks higher than other sensory information, and airflow, smell and residual hearing come next in the perceptual world of this sample, (3) cognitive aspects of communication correlate with the importance of discovery and localization, and (4) technical aids dominated by vision and vibratory senses are preferred. It is concluded that even a small remaining visual function could be of significant importance in rehabilitation. Finally, in the deaf-blind group of subjects with some remaining visual function, utilization of remaining vision was felt to be more important than utilization of other sensory modalities.

Recent losses occurring in the two years before onset of depression in women are distinguished from past losses occurring at any time before this. Of past losses only loss of mother before II is associated with greater risk of depression--both among women treated by psychiatrists and among women found to be suffering from depression in a random sample of 458 women living in London. Past loss of a father or sibling before 17 (or a mother between II and 17), or a child or husband, is not associated with a greater chance of developing depression. However, among patients all types of past loss by death are associated with psychotic-like depressive symptoms (and their severity) and other types of past loss with neurotic-type depressive symptoms (and their severity). It is argued that these associations probably reflect direct causal links, and a sociopsychological theory to explain them is discussed.

Akad. Avh.

This research examined longitudinal associations between caregiving stressors, caregiver depression, and quality of care. Informal caregivers of elderly care recipients were interviewed at baseline (N = 310) and again one year later (N = 213). Hierarchical regression analyses indicated that increases in caregiving stressors (i.e., caregiver physical health symptoms, caregiver activity restriction, and care recipient controlling and manipulative behavior) were related to increased caregiver depression. In turn, increased caregiver depression and decreased caregiver respectful behavior predicted increases in potentially harmful behavior. These results extend previous cross-sectional findings and indicate that changes in caregiving stressors, caregiver depression, and caregiver respect over time may signal that intervention is warranted in order to forestall or prevent poor quality of care.

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.

BACKGROUND:
This study examined depressive symptoms in bereaved children and adolescents two months after the death of a parent.
METHODS:
Participants were 325 children and adolescents bereaved of a parent approximately two months prior to the study. They were compared to 129 non-bereaved community controls and 110 non-bereaved depressed controls. Participants and their parents were interviewed regarding the child's depressive symptoms. Possible moderating factors for depression in bereaved children were examined.
RESULTS:
25% of the bereaved participants experienced a major depressive episode (MDE) compared to 1% of the community controls. An additional 24% of the bereaved participants experienced a sub-syndromal depressive episode, defined as 3 or 4 depressive symptoms, compared to 4% of the community controls. Factors correlated with occurrence of MDE in the bereaved children in exploratory analyses were (1) history of MDE in the child and (2) history of alcoholism in a parent. Guilt/worthlessness, psychomotor disturbance, and low energy in the context of an MDE predicted membership in the depressed control group over the bereaved group.
LIMITATIONS:
The relationship between an MDE in the bereaved child and parent history of alcoholism is exploratory, as the p-value for this correlation was greater than the α adjusted for multiple comparisons. The bereaved child's history of MDE was based on the child's and parent's memories of depressive symptoms.
CONCLUSIONS:
The death of a parent is a risk factor for depressive symptoms and depressive episodes in children and adolescents two months after the death.

OBJECTIVES: To assess burden in the caregivers of patients with severe traumatic
brain injury (TBI) 1 year postinjury, related to caregiver's demographic data and
social network, patient's demographic data, injury severity, and functional
status.
DESIGN: Prospective national multicenter study. Self-report from caregivers,
patient data collected from the national cohort on patients with severe TBI.
PARTICIPANTS: 92 caregivers.
MAIN OUTCOME MEASURE: The Caregiver Burden Scale (CBS).
RESULTS: Total caregiver burden was reported high in 16% of caregivers and
moderate in 34%. The mean total burden index was 2.12, indicating a moderate
burden. Caregivers reported highest scores on the General strain index, followed
by the Disappointment index. Poor social network, feeling loneliness, and caring
for patients with severe disability were significant predictors of higher burden
in univariate analyses (P < .01). Multiple linear regression analyses showed that
experiencing loneliness and caring for a patient with more severe disability were
independent predictors for higher caregiver burden for all CBS indices. Marital
status (married) and low frequency of meeting friends were significant results in
some indices.
CONCLUSIONS: Lack of a social network, feeling loneliness, and patient's
functional status are predictors of caregiver burden. General strain,
disappointment, and isolation were identified as areas in which caregiver burden
is high.

OBJECTIVE:
Postnatal depression in women is associated with adverse effects on both maternal health and children's development. It is unclear whether depression in men at this time poses comparable risks. The present study set out to assess the association between depression in men in the postnatal period and later psychiatric disorders in their children and to investigate predisposing factors for depression in men following childbirth.
METHOD:
A population-based cohort of 10,975 fathers and their children from the Avon Longitudinal Study of Parents and Children (ALSPAC) was recruited in the prenatal period and followed for 7 years. Paternal depressive symptoms were assessed with the Edinburgh Postnatal Depression Scale and later child psychiatric disorder (DSM-IV) with the Development and Well-Being Assessment.
RESULTS:
Depression in fathers in the postnatal period was significantly associated with psychiatric disorder in their children 7 years later (adjusted OR 1.72, 95% CI 1.07-2.77), most notably oppositional defiant/conduct disorders (adjusted OR 1.94, 95% CI 1.04-3.61), after adjusting for maternal depression and paternal educational level. A history of severe depression and high prenatal symptom scores for depression and anxiety were the strongest predictors of paternal depression in the postnatal period.
CONCLUSIONS:
Depression in fathers in the postnatal period is associated with later psychiatric disorders in their children, independently of maternal postnatal depression. Further research into the risks associated with paternal psychopathology is required because this could represent an important opportunity for public health intervention.

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.

Introduction: The aim was to compare an urban and a rural old population regarding depression. Method: A population-based, cross-sectional study in five depopulated areas and one expanding urban city in northern Sweden. Participants aged 85 and above were evaluated for depression. Data were collected from structured interviews and assessments and from relatives, caregivers and medical charts. Depression was screened for using the Geriatric Depression Scale-15 (GDS-15) and evaluated by the Montgomery-Åsberg Depression Rating Scale (MADRS). Results: In total, 29% of the 363 participants were depressed (34% in the rural municipality and 27% in the urban municipality). Fifty-one percent versus 69% were receiving treatment with antidepressants. In the rural areas, those with depression were less frequently treated with selective serotonin reuptake inhibitor (SSRI) medications (36% versus 65%; p = 0.004), instead there were participants treated with Tri Cyclic Antidepressant's (TCA's) (10%, versus 0%; p = 0.0018). A larger proportion of the participants in the urban sample had responded to treatment (59% versus 27%; p = 0.175). Conclusion: Depression in old age appears to be a common cause of emotional suffering among the oldest old. In the rural areas, depression was more often inadequately treated and it was also treated with inappropriate medications.

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.

Abstract
This study investigated the relationship of depressive symptoms, social support, and a range of personal health behaviors in 2,091 male and 3,438 female university students from 16 countries. Depressive symptoms and social support were measured using the short Beck Depression Inventory and the Social Support Questionnaire; 9 personal health behaviors were also assessed. After the authors took age, social support, and clustering by country into account, depressive symptoms were significantly associated with lack of physical activity, not eating breakfast, irregular sleep hours, and not using a seat belt in both men and women, and additionally with smoking, not eating fruit, and not using sunscreen among women. Low social support was independently associated with low alcohol consumption, lack of physical activity, irregular sleep hours, and not using a seat belt in men and women. Bidirectional causal pathways are likely to link health behaviors with depressed mood.

This study investigated the relationship of depressive symptoms, social support, and a range of personal health behaviors in 2,091 male and 3,438 female university students from 16 countries. Depressive symptoms and social support were measured using the short Beck Depression Inventory and the Social Support Questionnaire; 9 personal health behaviors were also assessed. After the authors took age, social support, and clustering by country into account, depressive symptoms were significantly associated with lack of physical activity, not eating breakfast, irregular sleep hours, and not using a seat belt in both men and women, and additionally with smoking, not eating fruit, and not using sunscreen among women. Low social support was independently associated with low alcohol consumption, lack of physical activity, irregular sleep hours, and not using a seat belt in men and women. Bidirectional causal pathways are likely to link health behaviors with depressed mood.

This study looks at how mothers with an intellectual disability describe their children's needs, their own parenting and parenthood, and their encounters with professionals providing them with help and support. The analysis draws upon a relational perspective on disability, theories of modern parenthood, and the concept of the sense of coherence in examining the strategies used by the interviewed mothers in their everyday lives, such as consulting people they trust. Having a child and being entrusted with the role of parenthood were described by the interviewed mothers as creating meaningfulness in their lives, while the comprehensibility of their everyday lives was often found to be lacking and the information given them by professionals not always understandable. Better information and communication thus seem to be necessary to render these mothers' parenthood and its context more comprehensible.

Background
It has been estimated that approximately 20% of all Swedish children grow up with parents having alcohol problems, which may result in negative outcomes among these children. Therefore, most Swedish municipalities provide resources for support, but at the same time figures reveal that not even 2% receive support, mainly due to difficulties in identifying and recruiting these children into support programs. Delivering intervention programs to children and adolescents via the Internet seems a promising strategy, but to date, the number of web-based interventions aimed at this target group is very scarce. We have therefore developed a novel internet-delivered therapist assisted self-management intervention called the web-ICAIP (Individual Coping and Alcohol Intervention Program) for adolescents having parents with alcohol problems. The purpose of the program is to strengthen adolescents' coping behavior, improve their mental health, and postponing the onset or decreasing risky alcohol consumption. This paper describes the web-ICAIP and the design of a randomized controlled trial (RCT) to measure the efficacy of this intervention.

Methods/Design
The RCT will include at least 183 adolescents (15-19 year old) who will be randomly allocated to two conditions where one group has access to the web-ICAIP and the other is a waiting list control group. Participants will be recruited from websites containing information and facts for adolescents about alcohol and other drugs. Possible participants will be screened using the short version of the Children of Alcoholics Screening Test (CAST-6). The assessment consists of a baseline and two follow-up measurements taking place after two and six months, respectively. The primary outcomes include the Center for Epidemiological Studies Depression Scale (CES-DC), a coping behavior scale, and also the short version of the Alcohol Use Disorders Identification Test (AUDIT-C). Additional outcomes include the "Ladder of life" which measures overall life satisfaction and questions concerning program adherence.

Discussion
There is an urgent need for developing and evaluating web-based intervention programs which target children having parents with alcohol problems. This study will therefore make an important contribution to this novel field of research.

Background
Preventive interventions are developed for children of parents with mental and substance use disorders (COPMI), because these children have a higher risk of developing a psychological or behavioral disorder in the future. Mental health and substance use disorders contribute significantly to the global burden of disease. Although the exact number of parents with a mental illness is unclear, the subject of mentally ill parents is gaining attention. Moreover there is a lack of interventions for COPMI-children, as well of (cost-) effectiveness studies evaluating COPMI interventions. Innovative interventions such as e-health provide a new field for exploration. There is no knowledge about the opportunities for using the internet to prevent problems in children at risk. In the current study we will focus on the (cost-) effectiveness of an online health prevention program for COPMI-children.

Methods/Design
We designed a randomized controlled trial to examine the (cost-) effectiveness of the Kopstoring intervention. Kopstoring is an online intervention for COPMI-children to strengthen their coping skills and prevent behavioral and psychological problems. We will compare the Kopstoring intervention with (waiting list) care as usual. This trial will be conducted entirely over the internet. An economic evaluation, from a societal perspective will be conducted, to examine the trial's cost-effectiveness. Power calculations show that 214 participants are needed, aged 16-25. Possible participants will be recruited via media announcements and banners on the internet. After screening and completing informed consent procedures, participants will be randomized. The main outcome is internalizing and externalizing symptoms as measured by the Youth Self Report. For the economic evaluation, healthcare costs and costs outside the healthcare sector will be measured at the same time as the clinical measures, at baseline, 3, 6 and 9 months. An extended measure for the intervention group will be provided at 12 months, to examine the long-term effects. In addition, a process evaluation will be conducted.

Discussion
Recent developments, such as international conferences and policy discussions, show the pressing need to study the (cost-) effectiveness of interventions for vulnerable groups of children. This study will shed light on the (cost-) effectiveness of an online preventive intervention.

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.

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.

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.

Hur är det att förlora en vuxen son, som överlever till ett nytt och annorlunda liv med en svår hjärnskada? Kan vårdpersonal, personliga assistenter, pedagoger och anhöriga lära sig att uppskatta det unika hos varje patient, klient, kund, brukare och närstående? Patient, klient, kund, brukare, handikappad, funktionshindrad ... Alla dessa försök att hitta en värdig etikett på den som är beroende av stöd avslöjar ett mycket större, outtalat problem med vår attityd och vår rädsla för det annorlunda. Tobias cyklade omkull och slog sönder vänster hjärnhalva. Tobias mamma, författaren, berättar personligt om vården och bemötandet från och med det akuta omhändertagandet, genom intensivvård och rehabilitering till upprättandet av en vardag, en process på drygt fyra år. Närståendes och anhörigas reaktioner beskrivs ingående. Författaren lyckas förmedla att förtvivlan och ovisshet kan gå hand i hand med kraft, inspiration och hopp, trots förlustens skoningslösa konsekvenser. Personalens bemötande beskrivs också, men ur ett mer professionellt perspektiv, med såväl beröm, som kritik och konstruktiva förslag. Två perspektiv förmedlas: Hur föräldrarna blir traumatiserade, sårbara och reagerar på ett sätt som liknar perioden efter barnafödande, samt hur deras utsatthet och trevande försök att hantera läget, ständigt avbryts för en nödvändig kamp mot snäva perspektiv hos personer i beslutsfattande position. Det andra perspektivet är professionellt; läsaren inspireras att reflektera, de personliga exemplen blir material att fundera över ur ett generellt bemötandeperspektiv: Vilka värden och värderingar möter vi hos oss själva och andra, när en medmänniska förlorar så mycket av allt det som format hans/hennes identitet och vår relation? Boken fyller en lucka i vård-, psykologi- och omsorgsprogram. Personal får inspiration i arbetet. Anhöriga och drabbade känner igen sig och upplever ett stort stöd i denna berättelse, som är lika aktuell idag 2012 som då första utgåvan publicerades

Avhandling

Kunskapsöversikten syftar till att skapa en överblick över relevant forskning och utveckling inom området anhörigomsorgens konsekvenser för försörjning och ekonomi, samt att bidra till att stimulera och stödja utvecklingsarbete inom detta område. Målgruppen för kunskapsöversikten, lliksom för Nka:s arbete i övrigt, är anhöriga oah deras närstående, anställda inom vård och omsorg samt inom hälso- och sjukvård, beslutsfattare inom området, aktiva inom idéburna organisationer, studenter, lärare och forskare.

Syrén, Susanne (2010). Det outsagda och ohörsammade lidandet. Tillvaron för personer med långvarig psykossjukdom och deras närstående (Being in the world with long term psychotic illness – the unspoken and unheard suffering), Linnaeus University Dissertations No 6/2010. ISBN: 978-91-86491-07-9. Written in Swedish with a summary in English.Aim: The overall aim of the thesis was to describe the lived experience of being in the world with long term psychotic illness. This is described from three perspectives; the perspective of persons diagnosed with long term psychotic disorder; the perspective of their relatives; and a family perspective. Method: Three studies were conducted guided by a reflective lifeworld approach grounded in phenomenology. The data were generated through individual, group, and family interviews. Data were analyzed for essential meanings of being in the world. Results: Persons with long term psychotic illness live in a borderland of paradoxes between the usual and unusual. For the ill persons the existence is incomprehensible and defenceless with feelings of not being at home in the body and in the world. They search for themselves in a care context that is contradictory, simultaneously good and hostile. These experiences are mostly unspoken, a struggle with doubts about having health or illness, what is good or evil, and about being usual or unusual. The relatives exist in a dilemma of the possible and impossible, a continual infinite struggle. Co-existing with their ill family member is a communion and a longing for togetherness is prominent. Relatives struggle with responsibilities for themselves and for their ill family member. In these unheard struggles the relatives yearn for participation in the formal care context. Family interviews with persons with long term psychotic illness and their relatives revealed a co-existence hovering between chaos and boredom while striving for a peaceful and quiet life. Thefamilies search for constancy and predictability in the presence of incomprehensible and threatening dangers. The experience of being a We balances the unshared meanings of being in the world and the loss of being able to experience and do things together. The experience of being a We keeps their individual existence and co- existence from falling apart.Conclusion: Persons with long term psychotic illness and their relatives have to withstand extensive existential suffering, which is unspoken and unheard. Formal caring should be existential caring, supporting the ill person's comprehensibility and understanding of life, and feelings and experiences of being at home. Further, relatives should be acknowledged both as persons and carers and invited to participate in formal care. These results also point to the importance of strengthening feelings of togetherness and of being a We through systemic oriented existential conversations, where the ill person, their relative and a formal carer converse together.

Kunskapen om våld mot äldre kvinnor är mycket begränsad. Som ett led i att åtgärda bristerna genomförde Länsstyrelsen i Stockholms län under våren och hösten 2011 en utbildning i tre steg för drygt 500 personer verksamma inom äldreomsorgen i länet. I denna rapport beskrivs de resultat och synpunkter som framkommit efter utbildningssatsningen.

Rapporten innehåller bl.a. en forskningsöversikt över vad vi idag vet om tidig intervention, behandling och tvärfackligt samarbete när det gäller psykisk ohälsa/sjukdom hos mammor under graviditeten och efter förlossning. Forskning visar att för denna grupp har selektiv prevention visat sig effektiv och betydelsefull.
Det saknas idag stöd till de mest behövande spädbarnsfamiljerna och det finns en tydlig lucka i vårdkedjan. Organisationen för stöd till föräldraskapet och "relationen" mellan föräldern och det späda barnet behöver få en form inom svensk hälsovård. Ett flertal spädbarnsverksamheter har lagts ner i landet och det finns stora brister i tillgången på samspelsbehandling, där föräldrar med svårigheter i föräldraskapet kan få hjälp och stöd att reglera samspelet.
Vi hoppas och tror att denna rapport kan vara ett bra stöd i det fortsatta viktiga arbetet att samverka för att stödja det späda barnet som anhörig till en förälder med psykisk sjukdom. Detta blir än mer angeläget utifrån den nya lagstiftningen i HSL och LYHS.

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.

Vägledningen ger läsaren en historisk tillbakablick för att förstå nutiden och en presentation av viktiga aspekter som gäller de personer som är mottagare av boende- och boendestödsinsatser. Här beskrivs utvecklingen av boende- och boendestödsverksamheterna sedan psykiatrireformen. Det ges också en definition av vad ett hem är, hemmets betydelse för personen och den etiska plattformen som dessa verksamheter ska bygga på. Sedan behandlas målgruppen med fokus på heterogenitet och de skillnader som beror på ålder och diagnos. Dessutom presenteras målgruppens behov av stöd och service samt önskemål om var och hur man vill bo.

Kommunens mål- och planeringsarbete
Nästa del tar upp kommunens mål- och planeringsarbete för boendeverksamheter på ett övergripande plan och vänder sig steg främst till personer som arbetar med kommunal verksamhetsledning och enhetschefer. Här fokuseras innehållet på lagstiftning, tillsynsresultat samt villkor och redskap för verksamheten. Texten innehåller förslag på åtgärder som kan underlätta kommunernas arbete.

Rapporten ger också viktig bakgrundsinformation till främst enhetschefer och boendestödjare om hur man kan tänka kring bostäder. Här diskuteras aspekter som fullvärdig bostad, institutionell prägel, fysisk och psykosocial miljö samt vad som kännetecknar en god boendemiljö.

Utredningsmomentet och standardiserade bedömningsinstrument
Vägledningen innehålle också information om ansökan, biståndsbedömning och beslut när någon ansöker om insatser, information som främst vänder sig till biståndsbedömare och boendestödjare. Socialstyrelsen har tidigare publicerat en handbok om handläggning och dokumentation, här fokuseras på utredningsmomentet och användningen av standardiserade bedömningsinstrument. Dessutom betonas att behovsbedömningar är en kontinuerlig process eftersom en individs behov förändras.

Typer av boendestöd och hur arbetet kan utföras
Informationen om viktiga typer av stöd som förekommer i boendeverksamheter – psykosocialt boendestöd, stöd för att förebygga fysisk ohälsa och förbättra fysisk hälsa samt kognitiva hjälpmedel för personer med psykisk funktionsnedsättning vänder sig främst till boendestödjare. Först behandlas boendestöd som funktion, vem som arbetar med stödet samt vad man kan tänka på när man arbeta i någon annans hem. Kärnan är ny forskning som består av intervjuer med boende om hur de vill att boendestödet ska ges.

I kapitel 9 ges exempel på kognitiva funktionsnedsättningar som komplicerar vardagslivet, en del kognitiva hjälpmedel samt vad man kan tänka på när de ska användas.

Boendestöd utifrån ett folkhälsoperspektiv
Målgruppens fysiska hälsa har visat sig vara ett mycket eftersatt område och i sjunde kapitlet presenteras forskning som jämför målgruppen med befolkningen i övrigt. Texten har ett folkhälsoperspektiv och kan stimulera till insatser i ett boendesammanhang för att förebygga fysisk ohälsa och förbättra gruppens fysiska hälsa. Hälso- och sjukvård i permanenta boenden

Den del av rapporten som tar upp ansvarsfrågor när det gäller hälso- och sjukvården i olika permanenta boenden vänder sig främst till ledningsnivån, enhetschefer och medicinskt ansvariga.

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.

In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems related to this method as well. Subjectivity of interpretation and low reliability results have been described as the main problems. In the present study, our aim was to estimate the reliability of the Alertness Observation List (AOL) while, at the same time, minimizing the problems entailed in observations. We calculated both the inter-observer agreement and intra-observer agreement for 39 situations. Since the results exceeded the formulated 80%-criterion, we concluded that the AOL was a reliable instrument. However, the large range found in the results was striking. Moreover, observers with different information about the observed individuals came up with different reliability scores. To determine the value of observation of individuals with PIMD, it might well be necessary to judge the actual usefulness that the instrument has in clinical practice, besides the reliability of the results.

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers' capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Abstract
Purpose: Drawing on the perspectives of stroke survivors, family members and domestic helpers, this study explores participants' experiences of self-perceived fall risk factors after stroke, common fall prevention strategies used, and challenges to community participation after a fall.

Methods: Semi-structured interviews were conducted in Singapore with community-dwelling stroke survivors with a previous fall (n = 9), family caregivers (n = 4), and domestic helpers (n = 4) who have cared for a stroke survivor with a previous fall. Purposive sampling was used for recruitment; all interviews were audio-recorded with permission and transcribed. Thematic analysis was conducted using NVivo (v10) software.

Results: All participants shared their self-perceived intrinsic and extrinsic fall risk factors and main challenges after a fall. For stroke participants and family caregivers, motivational factors in developing safety strategies after a previous fall(s) include social connectedness, independent living and community participation. For family caregivers and domestic helpers, the stroke survivor's safety is their top priority, however this can also lead to over-protective behavior outside of the rehabilitation process.

Conclusions: Reducing the risk of falls in community-dwelling stroke survivors seems to be more important than promoting community participation among caregivers. The study findings highlight that a structured and client-centered fall prevention program targeting stroke survivors and caregivers is needed in Singapore. Implications for rehabilitation Falls after stroke can lead to functional decline in gait and mobility and restricted self-care activities. Community-dwelling stroke survivors develop adaptive safety strategies after a fall and want to be socially connected. However, caregivers see the safety of the stroke survivors as their top priority and demonstrate over-protective behaviors. Fall prevention programs for community-dwelling stroke survivors should target both stroke survivors and their caregivers. A structured and client-centered fall prevention program targeting at multiple risk factors post-stroke is needed for community-living stroke survivors.

PURPOSE: The study aimed to identify factors related to family caregivers' sleep.
DESIGN AND METHODS: The study used a cross-sectional design with objective and subjective methods to measure sleep in the home setting over a 7-day period.
FINDINGS: Findings indicated that poor sleep quality was found in 91.7% of the caregiver participants. Depression, sleep hygiene, burden, and care-recipients' sleep were significant predictors of various dimensions of caregivers' sleep.
PRACTICE IMPLICATIONS: Our study suggests that sleep quality for family caregivers of individuals with dementia varies considerably from night to night. Understanding the complex interrelationships among caregivers' sleep and other contributing variables is an important first step toward the development of individualized and effective treatment strategies.

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.

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.

Children with mentally ill parents are at risk of developing mental health problems themselves. To enhance early support for these children may prevent mental health problems from being transmitted from one generation to the next. The sample (N = 219) included health professionals in a large university hospital, who responded to a web-based survey on the routines of the mental health services, attitudes within the workforce capacity, worker's knowledge on the impact of parental mental illness on children, knowledge on legislation concerning children of patients, experience, expectations for possible outcomes of change in current clinical practice and demographic variables. A total of 56 % reported that they did not identify whether or not patients had children. There were no significant differences between the groups (identifiers and non-identifiers) except for the two scales measuring aspects of knowledge, i.e., Knowledge Children and Knowledge Legislation where workers who identified children had higher scores. The results also showed that younger workers with a medium level of education scored higher on Positive Attitudes. Furthermore, workers who reported to have more knowledge about children and the impact of mental illness on the parenting role were less concerned about a child-focussed approach interfering with the patient-therapist relation.

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?

Avhandling

Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

Abstract:
Objectives Measuring patients satisfaction is an important part of continuous quality improvement in health care. In intensive care, family satisfaction is often used as a proxy for patient experience. At present, no suitable instrument to measure this has been fully validated in Sweden. The purpose of this study was to develop and validate a questionnaire intended to evaluate families' satisfaction of quality of care in Swedish intensive care units. Methods Based on literature and the modification of pertinent items in two existing North American questionnaires, a Swedish questionnaire was developed. Content validity was assessed by experts, and the cognitive method Think Aloud was used with twelve family members of intensive care patients in two different intensive care units. Data was analysed using qualitative content analysis. Findings Seven items in the questionnaire were identified as problematic, causing eight problems concerning questioning of content and 23 concerning misunderstanding. Six of these items were changed in order to be understood the way they were intended, and one item was removed. Conclusion A family satisfaction questionnaire applicable in Swedish intensive care units has been developed and validated for respondents' understanding of the questions being asked. However, further psychometric testing should be performed when more data are available.

examine epidemiology in this chapter from several perspectives: demographic, transitional, community, developmental, and lastly, experimental / we use data from epidemiological studies in Woodlawn, beginning in the 1960s and still continuing, to illustrate these perspectives, showing demographic aspects of this urban poor, Black, neighborhood, the mobility or transition of the families over the period of 1966 to 1976, antecedents along developmental paths to aggression and depression from 1st grade through midadolescence / examine epidemiologically within Woodlawn variations in school and classroom environments and in family structure at the time of 1st grade, as well as family evolution through the child rearing style
epidemiological examination of aggression and depression, these being special cases of the more general problem of measuring psychopathology (PsycINFO Database Record (c) 2016 APA, all rights reserved)

examine epidemiology in this chapter from several perspectives: demographic, transitional, community, developmental, and lastly, experimental / we use data from epidemiological studies in Woodlawn, beginning in the 1960s and still continuing, to illustrate these perspectives, showing demographic aspects of this urban poor, Black, neighborhood, the mobility or transition of the families over the period of 1966 to 1976, antecedents along developmental paths to aggression and depression from 1st grade through midadolescence / examine epidemiologically within Woodlawn variations in school and classroom environments and in family structure at the time of 1st grade, as well as family evolution through the child rearing style epidemiological examination of aggression and depression, these being special cases of the more general problem of measuring psychopathology (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Efforts to understand the etiology of adult mental disorders by studying children has produced unanticipated changes in our understanding of pathology, individual development, and the role of social context. Among these are the blurring of the division between mental illness and mental health, the need to attend to patterns of adaptation rather than personality traits, and the powerful influences of the social world on individual development. Current developmental views place deviancy in the dynamic relation between individuals and their contexts. At another level, when we view the history of developmental psychopathology, dialectical developmental processes are evident as we trace how patterns of adaptation of researchers, expressed in theoretical models and empirical paradigms. increasingly have come to match the complexities of human mental health and illness.

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.

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.

This paper examines the rationale for service user and carer involvement in professional education and reflects on an initiative in which social work and nursing students undertook a sequence of joint learning in relation to mental health theory and practice. Central to this initiative was the promotion of opportunities for dialogue, both between students from different professional disciplines and between students, service users and carers. To enable this, much of the learning took place in small groups facilitated by either a service user or a carer. Evaluation of this initiative indicated that, for the majority of social work and nursing students, learning from this shared experience had a major impact on their professional development. However, a small but significant minority found it hard to enter into a dialogue with others on a basis of equality and a sharing of their human as well as their professional experience. Some students indicated that they would have preferred a focus on acquiring more specialist professional knowledge and skills. This raises important issues in relation to the changing expectations of professionalism and professional education-and what really makes someone 'fit for practice'.

Familjebaserad behandling är den standardbehandling som används för barn och ungdomar som lider av anorexia nervosa. Det är också den behandlingsform som ger bäst evidensbaserade resultat. Men att hjälpa ett barn som insjuknat i anorexia kräver mycket av föräldrar och familj och det är svårt att förutse hur intensiv den familjebaserade behandlingen är. I den här handboken får läsaren hjälp att förstå sjukdomen. Boken är praktiskt inriktad och författaren redogör för alla aspekter av behandlingen. Här beskrivs hinder och anorektiska beteenden som motverkar tillfrisknandet men författaren ger också tydliga verktyg för att lösa olika situationer. Familjebaserad behandling är en värdefull resurs för föräldrar som ska påbörja eller redan deltar i en familjebaserad behandling. Boken är också ett ovärderligt verktyg för vårdteam som ska vägleda familjer.

Familjefokuserad omvårdnad
Boken med originaltiteln Beliefs The heart of healing in families and illness ger en samlad bild av vad familjefokuserad omvårdnad innebär, men framför allt ger den en bild av den enorma kraft och potential som finns i våra föreställningar om olika fenomen. Detta gäller såväl sjuksköterskors föreställningar om familjer, hälsa, ohälsa/sjukdom som familjemedlemmars föreställningar om t.ex. sjuksköterskors roll och ohälsans/sjukdomens orsak och behandlingsmöjligheter för tillfrisknandet.

Författarna har genom sin långa kliniska erfarenhet samlat många fantastiska exempel från sitt arbete med familjer med varierande ohälso-/sjukdomsbilder. Dessa berättelser genomströmmar hela boken. De levandegör budskapet om att våra föreställningar och vår biopsykosociala och andliga struktur är avgörande för hur omvårdnaden av familjer ska leda till ett ökat välbefinnande och upplevd hälsa för dem.

Eftersom denna bok är skriven av sjuksköterskor för sjuksköterskor och sjuksköterskestudenter har vi valt att rikta texten mot mötet mellan sjuksköterskan och familjen. Boken har även en familjeterapeutisk utgångspunkt, vilket gör att även andra yrkesgrupper kan ha glädje av boken.

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.

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.

Using longitudinal register data on all persons born in Sweden 1973–1978, we report on prevalence of disability pension among young adults who were child welfare clients during their formative years, and explore risk factors for this long-term outcome. For most child welfare subgroups, prevalence approached or exceeded ten percent. Multivariate logistic regression analyses found high crude odds ratios of disability pension among child welfare alumni. These were substantially reduced – but not obliterated – after adjustments for a host of background factors. Decomposition analyses revealed that child welfare alumni's poor school performance and low educational attainment accounted for most of the confounding effects. We also found that child welfare clients with a disability pension had far higher rates of psychosocial problems in their adult lives than other peers with a disability pension.

Child welfare alumni should be regarded as a high risk group for future disability pension and for permanent exclusion from the labor market. Rates of suicidal behavior in adult age were extreme among some subgroups of child welfare alumni with a disability pension, which should be communicated to agencies who are likely to meet these groups (eg. primary health care).

This powerful book presents a series of perspectives on the process of self-organisation of disabled people which has taken place over the last thirty years. The 1980s saw a transformation in our understanding of the nature of disability, and consequently the kinds of policies and services necessary to ensure the full economic and social integration of disabled people. At the heart of this transformation has been the rise in the number of organisations controlled and run by disabled people themselves. Through a series of interviews with disabled people who have been centrally involved in the rise of the disability movement, the authors present a new collective history which throws light on the politics of the 1980s, and offers insights into future political developments in the 1990s and on into the twenty-first century.

Research, debate and policy on young carers has been welcomed by the carers movement and children's rights practitioners alike, but challenged by some disability rights authors who suggest defining the children of disabled parents as 'young carers' serves to undermine both the rights of disabled people and the rights of children. Among those putting forward this view are Jenny Morris and Lois Keith (Critical Social Policy, 1995, Issue 44/45). Here, we respond to the disability rights critique on behalf of academics working in the field of young carers, policy-makers and practitioners and, more importantly, on behalf of children who care.

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.

Background and aim: The discharge process (DP) is full of well-known risks. The general aim of this thesis was to shed more light into how different stakeholders experience the DP and evaluate the older persons' and their relative's preparedness for life at home after hospital discharge. Materials and methods: Both qualitative (Studies I, II, IV) and quantitative (Study III) research methods were selected. In Study I different care professionals (n=32) were interviewed in eight focus groups. Study I used a phenomenological method. In Study II older persons with home care nursing (HCN) and their relatives (n=26) were interviewed, and a grounded theory method was used. In Study III data were collected through a questionnaire among older persons and their relatives (n=152) and the questionnaire's psychometric properties were evaluated. Study IV was based on the data in Studies I and II and used an excursive interpretation based on a phenomenological approach and reflective lifeworld research. Results: The older persons and their relatives, as well as the care professionals, viewed the DP as ambiguous. Care and planning were described as fragmented. Three themes were important for care professionals' cooperation, actions and the outcome of the DP, but also associated with various difficulties and problems. The main concern of the older persons and their relatives was worry about not being sufficiently prepared for life at home. A theoretical model was created that illustrates whether the older persons and their relatives felt prepared or unprepared for life at home at discharge. The care professionals' skills were shown to be of utmost importance to satisfy the preparatory needs of the older persons and their relatives in three significant areas. The questionnaire showed that fifty-three per cent of the older persons and their relatives reported being insufficiently prepared. Factors associated with being insufficiently prepared were poor health at the time of the discharge and not asking for information. The DP is shown to be a critical event with illness making the meaning of life's fragility abruptly explicit and an unpredictable threat to getting on with one's life. The DP is characterised by experiences of being in-between that is contextual, bodily and existential for the older persons and the relatives accentuating their vulnerability. The relationship with care professionals and others, bodily conditions and life circumstances influence the in-between experience. Without the professional support and cooperation among them in the DP, the older persons run the risk of being lost and powerless throughout the DP. Conclusions: The DP deeply affects older persons and their relatives. When care professionals use a disease-led approach in their encounter with older patients and follow solely medical routines, they may lose focus on the patients' health processes. The older persons' and their relatives' experiences of exposedness and vulnerability due to illness, bodily, existential or contextual uncertainty indicate a threatening existence in the DP. The older persons and their relatives can easily be lost in an in- between experience illuminating the difficulties embedded in the illness, care and the DP in an older person's life. Care professionals need to acknowledge the individual and their everyday world and give follow-up support at home. This would make the DP a strong bridge between the hospital and home. The PPLH questionnaire developed from the theoretical model can be used to provide information that may prove useful in improving the DP from the perspective of older persons and their relatives and also as an assessment tool to identify and satisfy needs among older persons and their relatives both at hospital and at home.

We conducted two studies to examine parameters of social attention in contingency awareness training using switch activation with individuals who had multiple profound disabilities. In Study 1 we compared leisure devices and social attention as reinforcing stimuli with 5 individuals. Results indicated the reinforcing qualities of social attention over leisure devices with 2 individuals and documented the importance of session length in training. In Study 2 we investigated idiosyncratic behaviors as indicators of responsiveness with 3 of the 5 original participants as they activated switches. Behavior changes during switch activation versus nonactivation times in the leisure device and social attention conditions suggested volitional movement supporting contingency awareness and preference. Implications for clinical practice are discussed. © American Association on Intellectual and Developmental Disabilities.

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.

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"

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.

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.

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

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.

AIM: This study aimed to describe and compare urban and rural family caregivers'
reactions to caring for a relative with dementia and to examine the associations
between caregiving and socio-demographic factors.
BACKGROUND: Most studies on family caregivers' experiences caring for older
people with dementia have been conducted in urban areas, and little is known
about the experiences of family caregivers living in rural areas.
DESIGN: A cross-sectional study design was used.
METHODS: A total of 102 caregivers (response rate 85%) from urban (n=57) and
rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and
demographic information. Data were analysed using descriptive and inferential
statistics and linear regression models.
RESULTS: Overall, family caregivers reported high satisfaction even if they also
reported high impact on finances and daily living. Rural caregivers experienced a
higher negative impact on finances but reported more support from family members
than urban caregivers. Age, gender and relationship were significantly associated
with four of the five CRA subscales. Educational level and geographical setting
were not associated with any of the CRA subscales.
CONCLUSIONS: The results of the study raise questions about the financial
situation of older female caregivers and on the expectations of built-in family
structures in urban and rural areas. Further studies focusing on the meaning and
constitution of a family would help us to understand how these factors influence
family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE: To provide person-centred care and to avoid
stereotyped caregiving, a better picture of traditions in family caregiving can
improve a more differentiated and appropriate professional caregiving pliable
with the cultural context in which it is carried out.

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.

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.

Abstract
AIMS:
To consider the evidence of effect from English language, empirically based quantitative evaluations of community-based interventions for bereaved children; community-based interventions being understood as those taking place outside a clinical setting.
METHODS:
MedLine, PsychInfo, Applied Social Sciences Index and Sociological Abstracts were searched for documents containing the words 'child', 'bereavement' and 'program', 'group', 'intervention', 'support' or 'evaluation'. The criterion for inclusion was that studies use a control group or pre- and post-test measurements using a standardized instrument.
RESULTS:
Nine relevant studies were identified. However, empirical evidence of positive outcomes for children was limited and compromised by methodological weaknesses in the design of the studies. Small sample sizes, irregular attendance, high levels of attrition, short time scales between pre- and post-testing and difficulty in developing appropriate instrumentation, including assessment of adherence to the agreed intervention programme, all created problems.
CONCLUSIONS:
The case for universal inclusion of this group of children in such support programmes remains unproven, and further exploration of the outcomes of a range of different community interventions is required, with a specific focus on long-term and/or unwanted effects and evaluation of the basis for referral.

Fifty elderly bereaved men and women, who received bereavement counseling by a physician and a psychologist at 3 separate occasions during the year after loss, were followed during another 10 years in regard to morbidity and mortality, as some earlier studies have indicated increased risk during widowhood. Days of hospital care and mortality rates during 5 and 8 years, respectively, were the primary outcome variables. A group of representative married subjects was used for comparison purposes. The results showed no difference between the groups in the number of days of care before loss, nor did the days of hospital care after the loss differ. The mortality rate was similar in both groups. This may suggest that bereavement counseling has a preventive effect regarding health and survival, but this should be further evaluated in controlled studies before counseling programs can be recommended.

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.

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.

European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work-care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data for 1994-2001, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. For the countries included in the study, the effects of informal caregiving seem to be more negative in Southern Europe, less negative in Nordic countries, and in between these extremes in Central Europe. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the lesser degree of coercion in the caring decision. Adapted from the source document.

BACKGROUND:
This is the first randomized controlled multicenter trial to evaluate the effect of two treatments of maternal attention-deficit hyperactivity disorder (ADHD) on response to parent-child training targeting children's external psychopathology.

METHODS:
Mother-child dyads (n = 144; ADHD according to DSM-IV; children: 73.5% males, mean age 9.4 years) from five specialized university outpatient units in Germany were centrally randomized to multimodal maternal ADHD treatment [group psychotherapy plus open methylphenidate medication; treatment group (TG): n = 77] or to clinical management [supportive counseling without psychotherapy or psychopharmacotherapy; control group (CG): n = 67]. After 12 weeks, the maternal ADHD treatment was supplemented by individual parent-child training for all dyads. The primary outcome was a change in the children's externalizing symptom scores (investigator blinded to the treatment assignment) from baseline to the end of the parent-child training 6 months later. Maintenance therapy continued for another 6 months. An intention-to-treat analysis was performed within a linear regression model, controlling for baseline and center after multiple imputations of missing values.

RESULTS:
Exactly, 206 dyads were assessed for eligibility, 144 were randomized, and 143 were analyzed (TG: n = 77; CG: n = 66). After 6 months, no significant between-group differences were found in change scores for children's externalizing symptoms (adjusted mean TG-mean CG=1.1, 95% confidence interval -0.5-2.7; p = .1854), although maternal psychopathology improved more in the TG. Children's externalizing symptom scores improved from a mean of 14.8 at baseline to 11.4 (TG) and 10.3 (CG) after 6 months and to 10.8 (TG) and 10.1 (CG) after 1 year. No severe harms related to study treatments were found, but adverse events were more frequent in TG mothers than in CG mothers.

CONCLUSIONS:
The response in children's externalizing psychopathology did not differ between maternal treatment groups. However, multimodal treatment was associated with more improvement in maternal ADHD. Child and maternal treatment gains were stable (CCT-ISRCTN73911400).

Abstract

The impact that providing care to ageing parents has on adult children's lives may depend on the long-term care (LTC) context. A common approach to test this is to compare whether the impact of care-giving varies between countries with different LTC coverage. However, this approach leaves considerable room for omitted variable bias. We use individual fixed-effects analyses to reduce bias in the estimates of the effects of informal care-giving on quality of life, and combine this with a difference-in-difference approach to reduce bias in the estimated moderating impact of LTC coverage on these effects. We draw on longitudinal data for Sweden and Denmark from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected between 2004 and 2015. Both countries traditionally had generous LTC coverage, but cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark. We use this country difference in the timing of the cutbacks to shed light on effects of LTC coverage on the impact care-giving has on quality of life. Our analyses show that care-giving was more detrimental for quality of life in Sweden than in Denmark, and this difference weakened significantly when LTC coverage was reduced in Denmark, but not in Sweden. This suggests that LTC coverage shapes the impact of care-giving on quality of life

OBJECTIVE:
To assess the impact of maternal attention-deficit/hyperactivity disorder (ADHD) symptoms on the effectiveness of a parent training (PT) program for preschool ADHD.

METHOD:
Eighty-three 3-year-old children with ADHD and their mothers selected from two community cohorts living in Hampshire, England (1992-93 and 1995-96, respectively), completed an 8-week PT program. ADHD symptoms and a number of other parent and child factors, including adult ADHD symptoms, were measured prior to the start of treatment (week 1: T1), immediately after treatment (week 8: T2), and at 15 weeks follow-up (week 23: T3).

RESULTS:
Mothers were divided into three groups on the basis of their scores (T1) on the Adult AD/HD Rating Scale (high, medium, low). Children of mothers in the high-ADHD group displayed no improvement after PT, whereas the levels of ADHD symptoms of the children of mothers in either the medium or low ADHD groups reduced substantially (F(4,60) = 3.13, p < .05). This association persisted after other child and maternal factors were controlled for in multiple regression analyses (beta > .30, p < .05).

CONCLUSIONS:
High levels of maternal ADHD symptoms limit the improvement shown by children with ADHD after a program of PT. This effect was unrelated to other aspects of maternal mental health and child functioning. The treatment of parental ADHD may be a prerequisite for the success of psychosocial interventions for childhood ADHD.

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.

This article seeks to describe and explain some of the factors behind the prevalence of women in informal care for seniors. It presents a qualitative study of women who are caring for a frail elderly parent in the Czech Republic. Care is seen as a space where gender and other intersecting identities are performed and this has specific subjective, structural and material consequences. The author draws on biographical interviews with women caregivers and shows how they "do gender and age" in their narratives of how and why they made the decision to provide care and how they actually provide care. The author identifies situations and circumstances in which gender categories and gender relations shift and are destabilised by changes in society. The Czech Republic is a country with a history of state socialism and with traditionally large numbers of women in the workforce, but it also has a highly traditional gender culture.

Background: Most people with dementia live in their own homes, often together with their partners, who become informal caregivers. Relationship quality and sense of couplehood can be threatened as a result of the transition from a mutually interdependent relationship to a caregiver-care-receiver relationship. This, in turn, may lead to many negative consequences for both partners. Support provided for couples is often divided into different types for the person with dementia and for the partner without dementia and lacks couple-based support that targets the relationship, resources and the couple's everyday life together. Aim: The overall aim of this thesis is to explore couple-centred interventions in dementia and to develop and test a salutogenic, resource-oriented and couple-based intervention among couples in which one partner has dementia living at home. Methods and findings: This thesis comprises three parts: The first part Exploring involves two linked reviews, one narrative review (study I A) and one scoping review (study I B) that aim to identify and describe what previous couple-centred interventions comprised and why they were conducted. The results of the reviews revealed a knowledge gap in and a need for easily accessible support that targets couple relationships, resources and everyday life. The second part Developing (study II) refers to the development of an easily accessible resource-oriented couple-management intervention. The first step was to identify priority topics for such an intervention through a co-researcher process with couples living with dementia. This included a comprehensive literature review, interviews with couples in which one partner has dementia, and consultation meetings with expert groups of people with dementia and partners in both Sweden and the UK. The co-researcher process and the expert meetings informed four main themes with corresponding sub-themes that couples with dementia considered as important to their wellbeing in their everyday lives: (1) Home and Neighbourhood, (2) Meaningful Activities and Relationships, (3) Approach and Empowerment, and (4) Couplehood. The themes were further developed and integrated into the multimedia application DemPower, which was developed for the delivery of the intervention. The third part Testing and Evaluating describes a feasibility study (study III) in which the DemPower application was tested for feasibility and acceptability among couples in Sweden and the UK. The results of the feasibility study indicated that the DemPower intervention was feasible and acceptable among couples in which one partner has dementia living at home. The testing and evaluating part also comprise a qualitative study (study IV) that explores the experiences of engaging with DemPower together as a couple living with dementia in Sweden. The findings resulted in the three themes: (1) Growth of the relationship, (2) We are not alone, and (3) Positive approach, which the couples appreciated and associated with the resource-oriented and salutogenic approach of DemPower. The overall findings of the thesis are presented in a concluding synthesis at the end of the thesis. The concluding synthesis, focused on "Meaningfulness", "Empowering health promotion", "Normalization" and "Transitions and couplehood", represents the core findings of this thesis

Den här boken handlar om små barn som har svåra sjukdomar eller funktionsnedsättningar. Barn som också har stora frågor, hemliga tankar och starka känslor. Vad betyder det för ett litet barn att inte kunna gå och springa, att inte kunna se, att ha trassliga och krångliga tankar, att vara annorlunda?

Christina Renlund visar hur vi kan hjälpa barnen att våga berätta om sina tankar och komma med sina frågor. Som läsare får man konkreta råd och tips om tekniker, lekar och övningar som hjälper barnen att formulera sina tankar och att uppnå en bättre självkänsla. Vi får också möta tre barn som går i barnterapi. De lär oss något om vad barn med funktionshinder möter i sina liv.

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.

Dregling är ett vanligt symtom hos barn med orofaciala funktionsnedsättningar. Svårigheter med att kontrollera sin saliv upplevs ofta som ett stort problem både av barnet självt och av omgivningen. På Mun-H-Center märker vi på flera sätt att det finns ett stort behov av kunskap om utredningsmöjligheter och behandling av dreglingsproblematik. I den här skriften om behandling av dregling finns information om orsaker och om olika behandlingsalternativ

Detta är en guide för föräldrar om kommunikation och kommunikationshjälpmedel för barn och
ungdomar med flerfunktionsnedsättning, baserad på aktuell forskning och praktik. Eftersom kommunikationshjälpmedel alltid används tillsammans med andra kommunikationssätt, aldrig helt ensamma,handlar boken också om kommunikation i allmänhet. Kunskapsöversikten inleds med en genomgång av vad det innebär att ha en flerfunktionsnedsättning och vad som menas med Alternativ och Kompletterande Kommunikation (AKK). Därefter går författaren igenom de tidiga stegen i kommunikationsutvecklingen och olika sätt att kartlägga kommunikation. Läsaren får bekanta sig med olika kommunikationssätt (manuella tecken, bilder, symbolsystem och konkreta föremål) och olika typer av samtalshjälpmedel och styrsätt. Stor vikt läggs vid pedagogiska råd kring att lära sig använda AKK och boken innehåller många exempel och beskrivningar av olika strategier och hur de kan tillämpas vid användning av olika hjälpmedel. Avslutningsvis finns det referenser och länkar till olika resurser som kan vara till nytta både för föräldrar och yrkesverksamma inom området

A mutually rewarding communicative interaction with a child whose development is atypical presents unique challenges that have to be met through the implementation of unique strategies by both partners in a dyad. The aim of this study was to provide a description, interpretation, and model for communicative interaction in a particular dyad that comprised a child with severe multiple disabilities who functioned at a presymbolic level and his caregiver. A qualitative, inductive approach focused on process analysis was used to examine a videotaped interaction between a 6-year-old boy with severe multiple disabilities and his caregiver in a play session at pre-school. System theory was used as a theoretical and conceptual framework to analyse the communicative process. Co-regulation, consensual frames, and system dynamics were used as key concepts to examine how the behaviors of the child and the behaviors of the adult were related to each other and how the partners co-created meaning in their interaction. As a result of the analysis, two models are presented. The first is a model of how a hierarchical order of consensual frames is built. The second model is a process map that provides an illustration of the communication dynamics. It is suggested that a system theory approach could be a useful framework, not only to explain results, but also as an analytical tool to provide more dyad-specific interaction models as a basis for individualized interventions. © 2004 Taylor & Francis Ltd.

The types of contingency experiences infants and young children are typically exposed to are examined with a focus on the implications for early childhood intervention with young children who have developmental disabilities and delays. Studies of response-contingent child learning, the manner in which contingencies are not under direct child control, and child/caregiver reciprocal contingencies, are reviewed in terms of how they influence child learning and development. Results indicate that the different types of contingencies all positively influence child behavior. Implications for practice are described in terms of contingency-rich everyday child learning activities, child response-contingent learning in the context of those activities, and caregiver contingent responsiveness as an instructional strategy for supporting child contingency learning.

Children who spend early portions of their lives in institutions or those maltreated in their families of origin are at risk for developing emotional and behavioral problems reflecting disorders of emotion and attention regulation. Animal models may help explicate the mechanisms producing these effects. Despite the value of the animal models, many questions remain in using the animal data to guide studies of human development. In 1999, the National Institute of Mental Health in the United States funded a research network to address unresolved issues and enhance translation of basic animal early experience research to application in child research. Professor Seymour Levine was both the inspiration for and an active member of this research network until his death in October of 2007. This review pays tribute to his legacy by outlining the conceptual model which is now guiding our research studies.

Results from adoption studies suggest that adoptive families may experience special impediments with respect to the developmental progress and outcome of their children. Based on attachment theory, two early intervention programs were designed to support families in the Netherlands with an internationally adopted child. The intervention aimed at promoting maternal sensitive responsiveness, secure infant-mother attachment relationships, and infant exploratory competence. Ninety families with an interracially adopted infant (71 from Sri Lanka and 19 from Korea) were assigned to either a control group or one of two intervention groups. All of the children, 44 boys and 46 girls, were placed for adoption under the age of 5 months (M = 8 weeks). The first intervention group (N = 30) received a personal book, which focused on sensitive parenting. The second intervention group (N = 30) was provided with the same book as well as with three video-feedback sessions at their home. The control group (N = 30) did not receive intervention. In the control group sensitive responsiveness and security of attachment were comparable to outcomes from normative samples. The least intensive program, the personal book, did not bring about change in mothers or infants. In contrast, intervention effects were established upon maternal sensitive responsiveness, infant competence, and infant-mother attachment in the group that received both the book and video feedback.

This three-part article describes the early years of one of the mother-baby-children groups of the Project for Mothers, Infants, and Young Children of September 11, 2001. The goal of the group was to help prevent the effects of trauma and loss from disrupting the relationships among the mothers, their infants, and growing children. View I by Anni Bergman describes the mothers' states of minds as the group began, when they felt that their worlds had collapsed under them. View II by Sally Moskowitz focuses on the clinical experience of working in the group, transference and countertransference themes, helping the mothers and children with their mourning process, and helping the mothers' relationships to each other, their babies, older children, family, and friends. The evolution of a casual, familial-type atmosphere and format came to be seen by the therapists as very important. The therapists wanted to provide whatever small feeling of normality and comfort possible in the context of the mothers' anguish. This routine atmosphere provided the backdrop against which the mothers could talk about what seemed like unspeakable events, thoughts, and feelings, and process the horrific events, in their magnitude and details. View III by Donna Demetri Friedman describes the play therapy treatment of two preschool-aged siblings in the context of the support group. The children's father had been killed in the World Trade Center attacks. This section describes the themes of the children's play and how they worked through the experience of the loss of their father, the birth of their sibling, and their mother's grief. It also describes their progress a decade later.

The Caroline Walker Trust was founded in 1988 after the death of the distinguished nutritionist, writer and campaigner, Caroline Walker. Established to continue her work and in her spirit, the CWT depends wholly on donations, legacies and project grants.

The work of the CWT is particularly targeted towards vulnerable groups and people who need special help. We produce nutritional and practical guidelines for both young and old.

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.

The objective of this study based on Swedish registers is to examine the influence of socioeconomic position on poststroke divorce and separation using education as a marker. People aged 18 to 64 who suffered a first stroke between 1992 and 2005 were included if they were married or cohabiting and had mutual children. The material included 42,026 first stroke cases and 424,281 nonexposed persons, both populations divided into three different educational groups. Results show that the risk of separation is much higher in the incident year and in the first poststroke year, above all among people with only compulsory (elementary) education.

A cross-sectional study was conducted among 286 Palestinian children 9-18 years of age and their mothers in the Gaza Strip. Traumatic events recollected by children living in areas of conflict, the prevalence of post-traumatic stress reactions and the relationship between children's and mothers' mental health were investigated. The Gaza Traumatic Events Checklist, Impact of Event Scale (IES) and General Health Questionnaire (GHQ) were used to measure outcome. Children experienced on average four traumatic events; one-third reported significant post-traumatic stress reactions. IES scores were higher among girls and mothers' GHQ scores significantly predicted children's IES scores.

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.

Background

Evidence-based programs (EBPs) targeting effective family skills are the most cost effective for improving adolescent behavioural health. Cochrane Reviews have found the Strengthening Families Program (SFP) to be the most effective substance abuse prevention intervention. Standardized cultural adaptation processes resulted in successful outcomes in several countries.

Objective

To promote wide-scale implementation and positive outcomes in Ireland, a unique model of inter-agency collaboration was developed plus guidelines for cultural adaptation with fidelity.

Methods

250 high-risk youth and families were recruited to complete SFP and its parent questionnaire. A quasi-experimental 2 group pre- and post-test design was employed where the norms were the comparison group. A 2 × 2 analysis of variance (ANOVA) generated the outcome tables including p values and Cohen's d effect sizes. Evaluation feedback was used to improve outcomes the next year.

Results

All 21 measured outcomes had statistically significant positive results. Larger effect sizes were found for the Irish families than the USA families (d = 0.57 vs. 0.48 for youth outcomes, d = 0.73 vs. 0.65 for parenting and d = 0.76 vs. 0.70 for family outcomes). Overt and covert aggression, criminality and depression decreased more in Irish youth, but the USA youth improved more in social skills.

Conclusions

This study suggests that SFP 12–16 is quite effective in reducing behavioural health problems in Irish adolescents, improving family relationships and reducing substance abuse. Additionally, the Irish interagency collaboration model is a viable solution to recruitment, retention and staffing in rural communities where finding five skilled professionals to implement SFP can be difficult.

Keywords

Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

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

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.

The Picture Exchange Communication System (PECS) is an augmentative and alternative communication (AAC) program used to teach functional requesting and commenting skills to people with disabilities (Bondy & Frost, 1993; Frost & Bondy, 2002). In this study, tangible symbols were added to PECS in teaching requesting to four students (ages 7-14) with multiple disabilities that included a visual impairment. First, an assessment was conducted to determine the preferred (i.e., reinforcing) and non-preferred items for each participant. Then, a multiple probe design across participants was used to evaluate the effectiveness of the adapted training. Data were collected across baseline, training and maintenance conditions, and generalization probes were conducted periodically throughout all conditions. All four participants learned requesting skills, generalized these skills to their classrooms, and maintained the skills after training. Recommendations are presented for future research regarding the use of adapted PECS with other AAC programs. © Division on Autism and Developmental Disabilities.

Purpose
– The purpose of this paper is to compare the outcomes from the Portuguese Strengthening Families Programme (SFP) with those from other countries to see if they are equally effective despite the new context. SFP was selected for cultural adaptation because comparative effectiveness reviews find that SFP is the most effective parenting and family intervention (Foxcroft et al., 2003, 2012). Standardised cultural adaptations of SFP have resulted in successful outcomes in 35 countries.

Design/methodology/approach
– The outcomes for the SFP six to 11 years Portuguese families (n=41) were compared to the SFP six to 11 years international norms (n=1,600) using a quasi-experimental, non-equivalent control two group pre- and post-test design. A 2×2 ANOVA generated the outcome tables including p-values and Cohen's d effect sizes. Standardised test scales were used and measured 21 parenting, family and child risk and protective factors.

Findings
– Statistically significant positive results (p < 0.05) were found for 16 or 76.2 per cent of the 21 outcomes measured for Portuguese families. The Portuguese effect sizes were similar to the SFP international norms for improvements in the five parenting scales (d=0.61 vs 0.65), five family scales (d=0.68 vs 0.70) and seven children's scales (d=0.48 vs 0.48) despite these norms having larger effect sizes than the USA norms. Hence, the cultural adaptation did not diminish the outcomes and SFP Portuguese families can benefit substantially from SFP participation.

Originality/value
– A Portuguese culturally adapted version of SFP had never been developed or evaluated; hence, this paper reports original findings.

This research tested the effectiveness of a multicomponent prevention program, Project SAFE (Strengthening America's Families and Environment), with 655 1st graders from 12 rural schools. This sample was randomly assigned to receive the I Can Problem Solve (ICPS) program (M. B. Shure & G. Spivack, 1979), alone or combined with the Strengthening Families (SF) program (K. L. Kumpfer, J. P. DeMarsh, & W. Child, 1989), or SF parent training only. Nine-month change scores revealed significantly larger improvements and effect sizes (0.35 to 1.26) on all outcome variables (school bonding, parenting skills, family relationships, social competency, and behavioral self-regulation) for the combined ICPS and SF program compared with ICPS-only or no-treatment controls. Adding parenting-only improved social competency and self-regulations more but negatively impacted family relationships, whereas adding SF improved family relationships, parenting, and school bonding more.

In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.

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.

Background

Alcohol and other drug use and misuse is a significant problem amongst Polish youth. The SFP10-14 is a family-based prevention intervention that has positive results in US trials, but questions remain about the generalizability of these results to other countries and settings.

Methods/Design

A cluster randomized controlled trial in community settings across Poland. Communities will be randomized to a SFP10-14 trial arm or to a control arm. Recruitment and consent of families, and delivery of the SFP10-14, will be undertaken by community workers. The primary outcomes are alcohol and other drug use and misuse. Secondary (or intermediate) outcomes include parenting practices, parent–child relations, and child problem behaviour. Interview-based questionnaires will be administered at baseline, 12 and 24 months.

Discussion

The trial will provide information about the effectiveness of the SFP10-14 in Poland.

Trial registration

International Standard Randomised Controlled Trial Number: ISRCTN89673828

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

The impact of low maternal IQ and poverty was examined through comparison of 27 school-age children of mothers with mild mental retardation to 25 similarly impoverished children of mothers without mental retardation. The children whose mothers had mental retardation had lower IQs and academic achievement and more behavior problems. Not one child with a mother who had mental retardation was problem-free. Boys were affected more severely than were girls. Quality of the home environment and maternal social supports were lower in the group with maternal mental retardation; both measures were negatively correlated with child behavior disorders. Results suggest that being raised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty alone.

This pilot study of 23 mothers with attention-deficit/hyperactivity disorder (ADHD) and their offspring with ADHD examined the effects of maternal stimulant medication on observed interactions. Parent-child interactions were observed using a structured protocol before and after mothers underwent a 5-week, double-blind stimulant titration. Despite dramatic effects of medication on adult ADHD symptoms, this small pilot and open label laboratory-based study did not identify maternal stimulant effects on observed parenting or child behavior. Given the documented impairments in parenting displayed by adults with ADHD, behavioral parenting interventions may be needed in conjunction with medication for mothers with ADHD to optimize family outcomes.

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.

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, posttreatment, 6- and 12-month follow up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, post-treatment, 6-and 12-month follow-up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

Keywords: children of alcoholics, parent training, behavioral couples therapy, alcoholism treatment, child functioning

Preparing for the Drug-Free Years (PDFY) is a curriculum designed to help parents learn skills to consistently communicate clear norms against adolescent substance use, effectively and proactively manage their families, reduce family conflict, and help their children learn skills to resist antisocial peer influences. This study examined the effects of PDFY on the trajectories of these factors, as well as on the trajectory of alcohol use from early to mid adolescence. The sample consisted of 424 rural families of sixth graders from schools randomly assigned to an intervention or a control condition. Data were collected from both parents and students at pretest, posttest, and 1-, 2- and 3 1/2-year follow-ups. Latent growth models were examined. PDFY significantly reduced the growth of alcohol use and improved parent norms regarding adolescent alcohol use over time. Implications for prevention and evaluation are discussed.

Data from 99 school-aged Bosnian refugee children living in Sweden were analyzed to reveal the patterns of war stress experienced and the relation between these stressors and current psychological problems. A significant pattern of associations emerged. When children had experienced much stress, talking about their experiences seemed to exacerbate their negative effects.

Retrospective and prospective investigations of children to alcoholic women gave an incidence of fetal alcohol lesion of one per 300 deliveries of whom half had the complete fetal alcohol syndrome. Perinatal and infant mortalities were increased seven to tenfold and low birth weight (less than or equal to 2 500 g), preterm deliveries (less than 37 weeks) and smallness for gestational age (less than -2 S.D.) were increased eightfold, threefold and twelvefold, respectively. Small size at birth correlated with reduced mental performance later in life, 58% had IQ below 85 and 19% below 70.8% had cerebral palsy. The incidence of cerebral palsy associated with maternal inebriety was 1/5 000 deliveries, i.e. every sixth case of cerebral palsy. Tracing of alcoholic women during pregnancy and treatment gave favourable effect on intrauterine growth when sobriety could be induced early in pregnancy but could not protect from functional brain disturbance measured by neurological performance and be evoked response electroencephalography. Damage to the fetus by alcohol is now the largest known health hazard by a noxious agent that is preventable.

Teori och behandling av flyktingbarn med svår psykisk ohälsa
Flyktingbarn som söker en fristad i vårt land påverkas ofta av egna svåra upplevelser av krig, våld och övergrepp. Många utvecklar allvarliga tecken till psykisk ohälsa. En del barn utvecklar ett apatiskt uppgivenhetssyndrom. När de så kallade apatiska flyktingbarnen dök upp i början av 2000-talet var bristen på kunskap stor. Inte sällan ledde det till att barnen inte fick hjälp eller att insatserna försämrade barnens tillstånd. I dag har både forskning och erfarenheterna av förebyggande insatser och behandling gjort stora framsteg.

Denna bok är den första i sitt slag om teori och behandling av barn med svåra uppgivenhetssyndrom, kunskaper som rör alla traumatiserade flyktingbarn som, om de inte behandlas på rätt sätt, riskerar att utveckla uppgivenhetssyndrom. Bokens författare är forskare, läkare, psykologer, sjukgymnaster, jurister, psykoterapeuter, sjuksköterskor, socionomer och socialpedagoger. Boken tar bland annat upp:

Effekter av långvarig stress på föräldra-barnrelationen
Biologiska och psykologiska effekter av trauma och uppgivenhetssyndrom
Beskrivningar av olika behandlingsmodeller
Nutritionsbehandling vid uppgivenhetssyndrom
Förebyggande insatser
Historiska erfarenheter av uppgivenhetssyndrom
Mänskliga rättigheter och etik
Asylprocessen och juridik
Hur påverkas behandlaren?
Boken riktar sig till alla som möter flyktingbarn med svår psykisk ohälsa eller uppgivenhetssyndrom: läkare, sjuksköterskor, studenter och andra inom vård, socialtjänst, skola, förskola, kommuner och andra myndigheter men också alla viktiga personer som finns runt barnen och deras familjer i sociala nätverk och frivilligorganisationer.

Syftet med denna kunskapsöversikt är att systematiskt kartlägga, granska och sammanställa kunskap om vilka utvärderade metoder och program som finns för att ge stöd till barn och/eller förälder när en förälder är beroende av alkohol eller andra droger. Kunskapsöversikten syftar också till att ge underlag för slutsatser om behov och riktning för vidare kunskapsutveckling och forskning.

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.

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.

The efficacy of a short-term attachment-based intervention for changing risk outcomes for children of maltreating families was examined using a randomized control trial. Sixty-seven primary caregivers reported for maltreatment and their children (1-5 years) were randomly assigned to an intervention or control group. The intervention group received 8 weekly home visits directed at the caregiver-child dyad and focused on improving caregiver sensitivity. Intervention sessions included brief discussions of attachment-emotion regulation-related themes and video feedback of parent-child interaction. Comparison of pre- and posttest scores revealed significant improvements for the intervention group in parental sensitivity and child attachment security, and a reduction in child disorganization. Older children in the intervention group also showed lower levels of internalizing and externalizing problems following intervention. This is the first study to demonstrate the efficacy of short-term attachment-based intervention in enhancing parental sensitivity, improving child security, and reducing disorganization for children in the early childhood period.

OBJECTIVE:
The authors investigated the efficacy of a 12-week manualized meta-cognitive therapy group intervention designed to enhance time management, organization, and planning in adults with attention deficit hyperactivity disorder (ADHD).

METHOD:
Eighty-eight clinically referred adults who met DSM-IV criteria for ADHD according to clinical and structured diagnostic interviews and standardized questionnaires were stratified by ADHD medication use and otherwise randomly assigned to receive meta-cognitive therapy or supportive psychotherapy in a group modality. Meta-cognitive therapy uses cognitive-behavioral principles and methods to impart skills and strategies in time management, organization, and planning and to target depressogenic and anxiogenic cognitions that undermine effective self-management. The supportive therapy condition controlled for nonspecific aspects of treatment by providing support while avoiding discussion of cognitive-behavioral strategies. Therapeutic response was assessed by an independent (blind) evaluator via structured interview before and after treatment as well as by self-report and collateral informant behavioral ratings.

RESULTS:
General linear models comparing change from baseline between treatments revealed statistically significant effects for self-report, collateral report, and independent evaluator ratings of DSM-IV inattention symptoms. In dichotomous indices of therapeutic response, a significantly greater proportion of members of the meta-cognitive therapy group demonstrated improvement compared with members of the supportive therapy group. Logistic regression examining group differences in operationally defined response (controlling for baseline ADHD severity) revealed a robust effect of treatment group (odds ratio=5.41; 95% CI=1.77-16.55).

CONCLUSIONS:
Meta-cognitive therapy yielded significantly greater improvements in dimensional and categorical estimates of severity of ADHD symptoms compared with supportive therapy. These findings support the efficacy of meta-cognitive therapy as a viable psychosocial intervention.

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.

This study examined the effects of filial piety on the appraisal of caregiving burden by Chinese-Canadian family caregivers. A quantitative telephone survey was used as the research design for this study. A total of 339 randomly selected Canadian-Chinese family caregivers of elderly were interviewed by telephone. A hypothesized model denoting both the direct and indirect effects of filial piety on caregiving burden was tested using structural equation modeling. While stressors and appraisal factors reported direct predicting effects on caregiving burden, filial piety indirectly affected caregiving burden by altering appraisals of the caregiver role. Filial piety served as a protective function to reduce the negative effects of stressors and to enhance the positive effect of appraisal factors on caregiving burden.

This paper examines the relationship between attitudes of filial responsibility and five different types of care-giving behaviours to parents among three cultural groups. It does so within an assessment of the relative importance of cultural versus structural factors for care-giving behaviours. Face-to-face interviews were conducted with 100 Caucasian-Canadians, 90 Chinese-Canadians and 125 Hong Kong-Chinese. Multiple regression analyses assessed the association of cultural and structural factors with behaviours among the total sample and each of the three cultural groups. Limited support was found for an association between care-giving attitudes and care-giving behaviours. Attitudes are related to emotional support only among the two Chinese groups as well as to financial support among Chinese-Canadian respondents and to companionship among Hong Kong-Chinese respondents. Attitudes are not the strongest predictors and are unrelated to assistance with basic and instrumental activities of daily living. However, cultural group per se is a strong predictor of care-giving behaviours as are: parental ill health, living arrangements, and relationship quality. This study suggests gerontological assumptions about the role of societal norms and personal attitudes in parental care-giving should be questioned. It also suggests the need for further inquiry into unpacking those aspects of 'cultural group' that are related to behavioural differences, and the importance of examining multiple types of care-giving behaviours and of distinguishing task-oriented helping behaviour from other types of assistance.

I denna rapport beskrivs politikeruppdraget vid politisk och finansiell samordning. Vid samordning samlas resurser över organisationsgränser för att användas gemensamt. Det unika med politisk och finansiell samordning är att huvudmännen har ett gemensamt kostnadsansvar. Resurserna kan omfördelas mellan huvudmän. Politisk samordning innebär att en politisk arena skapas som prioriterar resurser över organisationsgränser. I rapporten påvisas att politikeruppdraget skiljer sig mycket åt beroende på vilken inriktning som finns på olika områden; mot samordningsperspektiv eller befolkningsperspektiv. Inriktningen har skapats av vald struktur men också av hur aktörerna ser på sin roll och dess utövande. En ny struktur skapas på den parlamentariska arenan. I denna samordning betonas politikernas roll. Rollskillnader utvecklas dock mellan olika politiker, vilket gör att de får olika betydelse och status. Detta påverkar i sin tur deras inflytande. En samförståndspolitik utvecklas, där politikerna inte driver partipolitik. Genom politisk samordning skapas förutsättningar för gemensamma prioriteringar av behov. Den nya strukturen påverkar politikerna som aktörer i samtliga områden.

I rapporten återges ambitioner med finansiell och politisk samordning samt hur en ny politisk struktur skapas. Dessutom beskrivs politikernas motiv till engagemang, hur de ser på sin uppgift samt hur politisk organisering genom behovsidentifiering, prioritering, resursmobilisering och utvärdering utvecklas. Studien behandlar också politikernas betydelse för samarbete mellan chefer och professionella.

This paper focuses on how online health forums may benefit the wellbeing of caregivers. An online questionnaire of caregivers assessed caregiver strain, forum use, and mental and physical wellbeing. Results show a positive relation between caregiver strain and using online health forums to seek emotional support. Furthermore, we find that caregivers with higher levels of caregiver strain report lower mental and physical wellbeing. This relation is however moderated by using online health forums. While the amount of time spent on the online forums did not moderate the relation between caregiver strain and wellbeing, the amount of activity (i. e. the number of messages posted per week) did: Active participation in online health forums attenuates the negative effect of caregiver strain on wellbeing. These findings suggest that online forums are valuable for caregivers and that it is active contribution that matters, rather than simply visiting the online health groups.

Abstract [en]

OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period.

METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up.

RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change.

DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period. METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries
(Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up. RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia
diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems
(OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely
to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change. DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

Doktorsavhandling

Aim: To explore forensic care in EDs for victims of violence and their family members from the perspectives of ED department heads, ED nurses, and a family member of a victim of violence. Methods: Study I consisted of a questionnaire to all heads of EDs in Sweden, data were analyzed with descriptive statistics. Study II consisted of a similar questionnaire which also included the instrument Families' Importance in Nursing Care-Nurses' Attitudes. It was sent to all nurses at 28 EDs and data were analyzed using descriptive statistics, multiple linear and ordinal regression analysis. Study III comprised of individual interviews with twelve nurses from seven EDs and data were analyzed with content analysis. Study IV was a single case study with two interviews with a family member of a victim of violence. Data were analyzed with a Gadamer-inspired hermeneutic approach. Results: ED preparedness for forensic care varied and was often limited to women and children. Nurses played a key role, but most of them had no training for this task and felt uncertain (I, II, III). Creating a caring encounter was the main challenge for providing forensic care and nurses perceived hindering factors to overcome this challenge (III). Family members were rarely included in forensic care and nurses perceived that family members were offered little help (I-III). Having ED documents that included family members, was associated with a more positive attitude to family members, which in turn was associated with involving them in care (II). For the family member, perfunctory encounters and caring alliances had a major impact and the experience reframed life (IV). Conclusion: Lack of preparedness in EDs to care for all types of victims of violence and differences between individual nurses may prohibit the provision of equal care. Hindering factors for a caring encounter can result in forensic care being unaddressed, which may limit possibilities for alleviated suffering and legal justice. Family members were rarely included in forensic care, but caring encounters can be crucial for the family member in the aftermath of violence

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.

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.

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.

Thirty-two problem-oriented interviews with caregivers of patients with bipolar affective disorders were analyzed using content analysis. The 722 statements of caregivers about their experiences of subjective burden because of the illness of their family members were summarized in 49 global statements and correlated by factor analysis to 10 types of burden. In particular, patients' noncompliance as well as the helplessness of the caregivers in interaction with the (changing) depressive and manic symptoms of the ill family members emerged as serious burdens on the caregivers. Whereas female caregivers suffered more from problems regarding quality of relationship with the patient, male caregivers experienced more constraints on their own autonomy, uncertainty concerning their judgment of patients' capacity, and uncertainty because of the changing symptoms of illness. The findings of this study highlight that an appreciation of caregivers' own consternation and information about how best to handle the (uncooperative) behavior of the patient should be taken into account in psychoeducational groups as well as in the daily work routine of professionals.

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

Abstract:
Exploring the specific field of care robot orientation generates many questions regarding the meaning, content and how it should be conducted. The issue is important due to the general digitalisation and implementation of welfare technology and care robots. The aim of the study was to explore perceptions of care robot orientation from the potential users' perspective. Data were collected by focus group interviews in Finland, Germany and Sweden. In all three countries, potential user groups were represented: older adults, relatives, professional caregivers and care service managers. A qualitative descriptive method was used for analysing data. The data revealed three aspects of care robot orientation: (1) What care robot orientation is, (2) Who needs it and by Whom it should be given and (3) How it should be performed. The need for care robot orientation is general in society. In the absence of knowledge about care robots, it is nearly impossible to know what to ask for or actually seek information about. Therefore, care robot orientation must be founded on agile implementation planning for care robots, with a firm basis in trustworthy knowledge and information and respecting individuals' wishes. This also gives rise to an ethical challenge when care robots are offered to people having reduced decision-making ability (dementia, cognitive impairment), along with the issue of who then should make the decision. The mapping of the What, Who/Whom and How aspects of care robot orientation offers a foundation for the creation of orientation models, which might facilitate structured and goal-oriented care robot orientation strategies.

This thesis demonstrates relations among health, social network, ADL and patterns of care in the oldest old guided by a resource theoretical model.The analyzed data are based on two studies: the Nona study, a longitudinal study of 157 individuals aged 86 to 94 years, and the H70 study, a longitudinal study of 964 individuals aged 70 at baseline. Data were collected by interviews and to some extent in the H70 study, medical exams and medical records.The results demonstrate that perceived resources seem to affect patterns of care to a higher extent than the more objective resources in the sample of the oldest old. On the other hand, sociodemographic variables such as gender, marital status and SES, in addition to the more objective resources of having children nearby and the number of symptoms of illness predicted institutionalization during a subsequent 30-year period from the age of 70. The proportion of elderly persons' institutionalization was further significantly higher than that generally found in cross-sectional studies. ADL was one of the strongest predictors for both use of formal care and institutionalization in both samples, indicating an effective targeting of the formal care system in Sweden. The care at end of life in the oldest old is challenged by the problems with progressive declines in ADL and health, which makes it hard to fit in the dying oldest old in the palliative care system. There is a need to increase the knowledge and the possibility for care staff to support and encourage social network factors and for decision-making staff to consider factors beyond ADL.

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.

Caregivers of people with severe mental disorders suffer from having a considerable burden as a result of their caregiving role. They develop different kinds of coping strategies to deal with this burden. There has been a lack of qualitative studies on caregiver burden and coping, especially from non-Western populations. The present paper reports findings of a longitudinal study of burden and coping in a group of caregivers of people suffering from schizophrenia and bipolar affective disorder (BAD). Qualitative assessments were done by focus group discussions (FGDs) with the caregivers over a period of about a year. Caregivers reported burden in different areas including effects on family functioning, social isolation, financial problems, and health. They used multiple coping strategies including developing compassion in caregiving, hoping for a better future, developing faith in God, participating in religious practices, and helping others with a similar problem.

Introduction: Caregivers of patients of schizophrenia and bipolar affective disorder (BAD) experience considerable burden while caring their patients. They develop different coping strategies to deal with this burden. Longitudinal studies are required to assess the relationship between caregiver burden and coping. Aim: The present study was conducted to assess relationship between burden and coping in caregivers of clinically stable patients with schizophrenia and BAD. Method: One hundred patients each of schizophrenia and BAD attending a psychiatric outpatient setting and their caregivers were followed up for a period of 6 months. Burden and coping strategies were assessed in the caregivers at baseline, and after 3 and 6 months using the Burden Assessment Schedule (BAS) and Ways of Coping Checklist--Hindi Adaptation (WCC--HA). Results: Burden remained stable over 6 months and was comparable in the two groups of caregivers. Caregivers from both the groups were found to use problem focused coping strategies more often than seek social support and avoidance strategies. Scores on avoidance type of coping showed a positive correlation with the total burden scores and a number of burden factors. Conclusions: Caregivers of patients of schizophrenia and BAD face similar levels of burden and use similar types of coping methods to deal with it. Relationship between caregiver burden and coping is quite complex.

Abstract
OBJECTIVE:

To determine if caregiver burden (CB) can be an independent predictive factor of weight loss at three months in older outpatients suffering from mild to moderate Alzheimer's disease (AD) and living at home.
METHOD:

Prospective cohort study involving 105 subjects aged 70 years or more, affected by mild to moderate AD and living at home with the assistance of at least one informal caregiver, who consecutively underwent a multidimensional geriatric assessment. Body weight was re-evaluated at a three month follow-up, from December 2008 to April 2009. Those who experienced a weight loss greater than 3% of the baseline weight constituted the 'weight loss' group.
RESULTS:

Out of the 97 older participants attending follow-up, 22 (23%) had experienced a weight loss > 3%. At a multivariate logistic regression analysis, a greater CB at baseline, defined by a score of the caregiver burden inventory scale in the highest tertile (i.e. 36+ out of 96), turned out to predict weight loss at three months (odds ratio (OR) 13.93, 95% confidence interval (CI) 1.91-101.33, p = 0.009), independently of other factors associated with the 'weight loss' group such as age, functional dependence and the risk of malnutrition estimated by means of the Mini Nutritional Assessment Short Form (MNA-SF).
CONCLUSION:

For older outpatients affected by mild to moderate AD and living at home, CB constitutes a risk factor for weight loss even in the short-term, independently of other factors such as the risk of malnutrition assessed by means of the MNA-SF.

PURPOSE OF THE STUDY: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional self-efficacy jointly influence changes in ADL performance over time. DESIGN AND METHODS: The sample included 5,138 elderly recipients of home and community-based long-term care in Michigan. ADL performance was assessed multiple times over a 2-year period. Caregiver confidence was measured at baseline with a single item. Multilevel modeling was used to estimate the effect of caregiver confidence on changes in ADL performance over time, controlling for baseline self-efficacy, ADL performance, and other factors that might confound the relationship. Based on caregiver confidence and elder self-efficacy, we created 4 groups of elder caregiver dyads to explore the combined effect of caregiver and elder confidence on change in ADL performance. RESULTS: Elders whose caregivers were confident in their capacity for greater functional independence experienced greater improvement in ADL performance than those whose caregivers were not confident. Elders in dyads in which both members expressed confidence experienced more improvement in ADL performance than those in dyads in which either one or both members lacked confidence. IMPLICATIONS: Interventions to strengthen caregivers' confidence in their care recipients' functional capabilities may slow functional losses among home care elders. Additional research is needed to confirm these findings and identify the factors that influence caregiver confidence.

Recently, analysts in the United States (US) have proposed adopting caregiver credits, or pension credits, provided to individuals for time spent out of the workforce while caring for dependent children and sick or elderly relatives. The primary objective of these credits, used in almost all public pension systems in the European Union, is to improve the adequacy of old-age benefits for women whose gaps in workforce participation typically lead to fewer years of contributions, lower lifetime average earnings, and consequently lower pensions. This article examines caregiver credits in the context of future reforms to the US Social Security system, with attention given to the adequacy of current spouse and survivor benefits and how changing marital patterns and family structures have increased the risk of old-age poverty among certain groups of women. It then analyzes caregiver credit programs in selected countries, with particular focus on design, administration, and cost.

AIMS AND OBJECTIVES: This study set out to describe caregiver experience,
health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers' health-related quality of life and life satisfaction.
BACKGROUND: Knowledge about factors related to caregivers' health-related qualityof life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. DESIGN: A cross-sectional study. METHODS: Forty-nine informal caregivers and 49 patients were included.
Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction
Checklist) and caregiver- and patient-related factors. Associations were explored
by regression analyses. RESULTS: Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers' health-related quality and life satisfaction.
CONCLUSION: The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers' health-related quality of life and life satisfaction.
RELEVANCE TO CLINICAL PRACTICE: Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers' health.

Abstract

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

Abstract

This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.

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.