Bibliotek

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

This study examined barriers that families experience during treatment and the role these barriers play in participation and completion of therapy. We developed the Barriers to Treatment Participation Scale and evaluated performance among children (N = 260, ages 3-13) and families referred for outpatient treatment. The results indicated that: (a) the scale yielded high levels of internal consistency; (b) the experience of barriers to participation, whether rated by parents or therapists, predicted higher rates of dropping out of treatment, fewer weeks in treatment, and higher rates of cancelled appointments and not showing up for sessions; (c) the perception of barriers was distinguishable from several family, parent, and child characteristics assessed at intake and the experience of critical life events during treatment; and (d) perceived barriers added significant information in predicting participation in treatment, over and above other characteristics that are already known to predict poor participation in treatment. Barriers associated with treatment participation can help identify cases at risk for dropping out and suggest targets for intervention to improve retention of families in treatment.

Det har varit känt sedan länge att barn till föräldrar med psykisk sjukdom löper en hög risk att drabbas av psykiska och andra problem både under uppväxten och senare i livet. Ändå har vuxenpsykiatrin alltför ofta försummat att möta patienters barn och erbjuda stöd. I flera nordiska länder har lagstiftningen nyligen kompletterats med bestämmelser som förpliktigar hälso- och sjukvårdspersonalen att uppmärksamma barnens och familjernas behov av information och stöd när föräldern lider av en allvarlig sjukdom. Beardslees preventiva familjeintervention (FI) är den första familjefokuserade och strukturerade metoden som har använts i Sverige. Den har viss evidens för positiva långtidseffekter för barn och familjer när föräldern har depression. Avhandlingens syfte var att studera FI:s säkerhet och genomförbarhet i Sverige (studie I), dess upplevda effekter för familjer (studie I, III och IV) och familjeinterventionsprocessen ur alla familjemedlemmars perspektiv (studie II, III och IV). Studierna genomfördes i en naturalistisk kontext. Data i studie I samlades med en enkät som gavs till föräldrar och barn (117 föräldrar och 89 barn svarade) en månad efter en FI. I studie II intervjuades tio föräldrar med depressionsdiagnos om deras beslutsprocess fram till deltagande i en FI. I studie III och IV presenteras data från 25 intervjuer med föräldrar och 14 intervjuer med barn om deras erfarenheter av FI. Sjuttiofem behandlare från 29 psykiatriska enheter hade genomfört familjeinterventionerna för familjerna som deltog i studierna. Data analyserades med deskriptiv statistik och chi2 (I), Grounded theory (II och III) och kvalitativ innehållsanalys (IV). Resultaten från studie I visade, att den allmänna tillfredsställelsen med FI var hög både hos föräldrar och hos barn. Nittiotre procent av svaren från föräldrarna och 71 % från barnen var positiva gällande frågor om tillfredsställelse med och allmänna erfarenheter av FI. De rapporterade upplevda effekterna av FI var också övervägande positiva. Skuldkänslor minskade för 89 % av barnen som hade haft skuldkänslor gentemot föräldern innan FI. Kunskap om förälderns sjukdom upplevdes öka för 74 % av barnen. Barnen rapporterade några negativa effekter; fem barn upplevde ökad oro för föräldern och tre barn sämre mående efter FI.
I studie II intervjuades föräldrar med depressionsdiagnos vilket visade en ambivalens i beslutet att delta i en FI. Föräldrarna längtade efter att få veta hur deras barn mådde, hur de tänkte om sjukdomen och om de hade farit illa. Å andra sidan var föräldrarna oroliga inför att få svaren på dessa frågor iv
på grund att en hel del skuld- och skamkänslor var kopplade till frågan om barnens mående. Att utsättas för insyn i familjen var både en lättnad och skrämmande. Föräldrarnas erfarenheter undersöktes också i studie III. Att öppna upp en dialog med barnen om den psykiska sjukdomen var krävande. Att lyssna på barnens erfarenheter, att hitta lämpliga ord och slutligen börja prata om sjudomen i familjeträffen krävde att det fanns en grund av trygghet och förtroende både för behandlarna och för metoden. FI som metod verkade ge goda förutsättningar för att behandlarna skulle kunna etablera en allians med föräldrarna. Barnens erfarenheter presenteras i studie IV. De flesta barn beskrev en känsla av lättnad på grund av mer kunskap om förälderns sjukdom och öppnare kommunikation i familjen, därmed kände de också befrielse från en del av oron för föräldern. Barnen berättade att de kunde vara mer med sina vänner och inte längre behövde ta lika mycket ansvar hemma. Föräldrar och barn från samma familjer beskrev förändringarna på ett likartat sätt, tydande på att det fanns en ömsesidig förståelse i familjerna. Föräldrarna upplevde sig själva stärkta i sitt föräldraskap och deras skamkänslor hade minskat. Sammanfattningsvis är familjerna nöjda med sitt deltagande i FI, de rapporterar positiva effekter och andelen upplevda negativa effekter är låg. Barnen beskriver en känsla av lättnad och en befrielse från oron över förälderns sjukdom.

Caring for a person with dementia is one of the most devastating and challenging experiences that caregivers have to face. Many studies indicate that the experience of care giving reflects cultural care values and beliefs. Even though dementia care giving is the most frequently studied type of care as reflected in the literature, few studies have focused on dementia caregivers from culturally and linguistically diverse backgrounds. The purpose of this study was to explore Iranian immigrant experiences of taking care of a family member with dementia.An interpretive phenomenological approach was employed to investigate the experiences of ten Iranian family caregivers, each caring for a family member with dementia and living in Sweden. Caregivers were recruited through purposeful sampling and took part in semi-structured interviews. All of the individuals who were contacted participated in the study. The participants included seven women and three men, ranging in age from 40 to 65 years, from different cities. They had all lived in Sweden for at least 20 years. Two caregivers were married to people with dementia, and eight were caring for parents with dementia. Data analysis was guided by Benner's interpretive phenomenology and revealed three key themes, namely caring as an experience of fulfillment, admitting the diagnosis of dementia, and the shock of not being recognized by their family members with dementia. Positive aspects of care giving should be recognized and supported in order to facilitate the maintaining of caregivers' involvement. The positive experiences of care giving could help to alleviate the problems that are experienced by the caregivers of people with dementi

The BDI-II represents a highly successful revision of an acknowledged standard in the measurement of depressed mood. The revision has improved upon the original by updating the items to reflect contemporary diagnostic criteria for depression and utilizing state-of-the-art psychometric techniques to improve the discriminative properties of the instrument. This degree of improvement is no small feat and the BDI-II deserves to replace the BDI as the single most widely used clinically administered instrument for the assessment of depression.
[출처] Beck depression inventory -II|작성자 Mirr

INTRODUCTION:
Parents of a young child with severe disabilities are facing a large range of new challenges; furthermore, most of these families have extended social needs regarding information, financial support, day care facilities, disability aids, etc. Many parents with disabled children have been found to be dissatisfied with social services. This study explores parents' experiences with Danish social services during their transition to a new daily life after the birth of a severely disabled child.
MATERIAL AND METHODS:
Repeated qualitative interviews were performed individually with 16 parents of a severely disabled young child during the first two years after the diagnosis of the child's disabilities. Data were analysed using grounded theory.
RESULTS:
We found that the encounter with the social services increased stress in the families. Parental expectations were not met, especially regarding information; parents felt clientized, and obtaining social support was very resource consuming. Parents' needs regarding practical support and empathic case-working were not met and they spent much time and effort due to lacking continuity between sectors.
CONCLUSION:
Parents have specific needs when becoming clients in the social service system whose organisation of social services needs improvement. Health care professionals are advised to identify problems and support cooperation between the parents and the social service system, as well as to report the health-related consequences of prolonged and inefficient case-working for the child and its parents.
FUNDING:
was received from Socialministeriet, Landsforeningen LEV, Ronald McDonalds Børnefond, Susie og Peter Robinsohns fond, Rosalie Petersens fond, PLU-fonden, Ville Heises fond, Sygesikringens forskningsfond, Helsefonden, Elsass fonden.

82 Ss were studied in a comparative evaluation of a behavioral vs supportive treatment for illegal drug use. Behavioral treatment included stimulus control, urge, control, contracting/family support and competing response procedures for an average of 19 sessions. 37% of Ss in the behavioral condition were drug-free at 2 months, 54% at 6 months, and 65% at 12 months vs 20 +/- 6% for the alternative treatment during all 12 months. The behavioral treatment was more effective across sex, age, educational level, marital status and type of drug (hard-drugs, cocaine, and marijuana). Greater improvement for this condition was also noted on measures of employment/school attendance, family relationships, depression, institutionalization and alcohol use.

82 Ss were studied in a comparative evaluation of a behavioral vs supportive treatment for illegal drug use. Behavioral treatment included stimulus control, urge, control, contracting/family support and competing response procedures for an average of 19 sessions. 37% of Ss in the behavioral condition were drug-free at 2 months, 54% at 6 months, and 65% at 12 months vs 20 +/- 6% for the alternative treatment during all 12 months. The behavioral treatment was more effective across sex, age, educational level, marital status and type of drug (hard-drugs, cocaine, and marijuana). Greater improvement for this condition was also noted on measures of employment/school attendance, family relationships, depression, institutionalization and alcohol use.

The current article describes the phenomenology and empirically supported treatments for Tourette's disorder (TD) and presents data on treatment utilization from two separate national surveys of adults with TD (N = 672) and parents of children with TD (N = 740). Despite a wealth of empirical evidence demonstrating its effectiveness, results suggest that most people with TD do not receive behavior therapy for the condition. Reasons for this include a lack of information about the disorder among consumers and providers, a shortage of providers trained in the treatment, and concern about possible negative effects of behavioral treatment. The article concludes with a discussion about dissemination efforts aimed at making behavior therapy more widely available to children and adults with chronic tics and a review of beliefs about the negative effects of behavior therapy. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

PURPOSE/OBJECTIVES: To describe children's psychosocial adjustment to their mother's breast cancer and to compare their level of adjustment with normative data and with the level of adjustment of children of women with fibrocystic breast disease or diabetes. Hypotheses tested were (a) children of women with breast cancer would be most negatively affected and (b) families of mothers with fibrocystic breast disease would require less family adaptation than families of women with breast cancer or diabetes. DESIGN: One component of a larger longitudinal survey. SETTING: University-based physician clinic in a metropolitan area in the Northwestern United States. SAMPLE: Mothers, predominantly Caucasian, with medically controlled diabetes mellitus (n = 18), nonmetastatic breast cancer (n = 13), or biopsy-proven fibrocystic breast disease (n = 17) and their children (N = 48), who ranged in age from 6 to 12. METHODS: Five in-home interviews conducted at four-month intervals. MAIN OUTCOME MEASURES: Behavioral adjustment using the Louisville Behavior Checklist (maternal report) and the Zeitlin Coping Inventory (nurse-observer report) and self-esteem using the Personal Attribute Inventory for Children (children's self-report). FINDINGS: Children of women with breast cancer scored better than average on behavioral adjustment (mothers' ratings) and were judged by nurse observers to be better behaviorally adjusted than children in the noncancer illness groups. Children of women with breast cancer and of women with diabetes tended to score significantly lower on self-esteem than the comparative sample. CONCLUSIONS: Measures of childhood adjustment to chronic medical illness in mothers need to distinguish between behavioral adjustment and self-esteem. Discrepancies between child ratings and mother and nurse-observer ratings suggest that differences exist. IMPLICATIONS FOR NURSING PRACTICE: Findings are preliminary in nature, and other explanations for findings must be ruled out. However, if a child's self-appraisal is affected negatively by the mother's illness, it would be appropriate to identify ways to increase emotional and physical exchange with the child and to interpret inaccessibility in ways that protect the child's positive self-appraisal.

The Behavior Assessment System for Children, Second Edition (BASC–2; Reynolds & Kamphaus, 2004) is a multimethod, multidimensional system used to evaluate the behavior and self-perceptions of children, adolescents, and young adults aged 2 through 25 years. The BASC–2 is multimethod in that it has the following components, which may be used individually or in any combination: (1) two rating scales, one for teachers (Teacher Rating Scales, or TRS) and one for parents (Parent Rating Scales, or PRS), which gather descriptions of the child's observable behavior, each divided into age-appropriate forms; (2) a self-report scale (Self-Report of Personality, or SRP), on which the child or young adult can describe his or her emotions and self-perceptions; (3) a Structured Developmental History (SDH) form; (4) a form for recording and classifying directly observed classroom behavior (Student Observation System, or SOS), which is also available for PDA applications as an electronic version known as the BASC–2 POP or Portable Observation Program; and (5) a self-report for parents of children ages 2–18 years, designed to capture a parent's perspective on the parent-child relationship in such domains as communication, disciplinary styles, attachment, involvement, and others.

Behavioral couples therapy (BCT) is an evidence-based couple therapy intervention for married or cohabitating substance abusers and their partners. This paper provides readers with a substantive and methodological review of Fals-Stewart, O'Farrell, and colleagues' program of research on BCT. The 23 studies included in this review provide support for the efficacy of BCT for improving substance use behavior, dyadic adjustment, child psychosocial outcomes, and reducing partner violence. This review includes a description of BCT, summaries of primary and secondary outcomes, highlights methodological strengths and weaknesses, notes barriers to dissemination, suggests future research directions, and provides clinical implications for couple and family therapists. Although there are several versions of BCT developed for the treatment of substance abuse this paper focuses on the version developed by O'Farrell, Fals-Stewart, and colleagues.

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.

OBJECTIVE:
To investigate predictors and moderators of outcome of behavioral parent training (BPT) as adjunct to ongoing routine clinical care (RCC), versus RCC alone.

METHODS:
We randomly assigned 94 referred children (4-12 years) with attention-deficit/hyperactivity disorder (ADHD) to BPT plus RCC or RCC alone. Outcome was based on parent-reported behavioral problems and ADHD symptoms. Predictor/moderator variables included children's IQ, age, and comorbidity profile, and maternal ADHD, depression, and parenting self-efficacy.

RESULTS:
Superior BPT treatment effects on behavioral problems and ADHD symptoms were present in children with no or single-type comorbidity-anxiety/depression or oppositional defiant disorder (ODD)/conduct disorder (CD)-and when mothers had high parenting self-efficacy, but absent in children with broad comorbidity (anxiety/depression and ODD/CD) and when mothers had low parenting self-efficacy. In older children ADHD symptoms tended to decrease more through BPT than in younger children.

CONCLUSIONS:
Adjunctive BPT is most useful when mothers have high parenting self-efficacy and in children with no or single-type comorbidity.

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

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships''coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.

This study describes the theoretical assumptions and the application for health-promoting conversations, as a communication tool for nurses when talking to patients and their families. The conversations can be used on a promotional, preventive and healing level when working with family-focused nursing. They are based on a multiverse, salutogenetic, relational and reflecting approach, and acknowledge each person's experience as equally valid, and focus on families' resources, and the relationship between the family and its environment. By posing reflective questions, reflection is made possible for both the family and the nurses. Family members are invited to tell their story, and they can listen to and learn from each other. Nurses are challenged to build a co-creating partnership with families in order to acknowledge them as experts on how to lead their lives and to use their own expert knowledge in order to facilitate new meanings to surface. In this way, family health can be enhanced.

This book contains a selection of papers presented at the 10th International Congress of the International Association for Child and Adolescent Psychiatry and Allied Professions, held in Dublin in 1982. Developments currently taking place in child psychiatry and clinical child psychology are represented, and in particular, the two themes of processes within families and evaluation of intervention reflect important aspects of research activities that have emerged recently.

Guided by theory, empirical research, and clinical experience, this demonstration tested a 12-session group intervention for 38 inner-city children who had lost a caregiver. The design of the group intervention was guided by the psychodynamic tradition of the sponsoring agency, themes from the bereavement literature, and findings from intervention research on bereaved children and adults. Attendance for the group intervention was high among those 29 children who completed posttests. The loss of the parent figure often had an impact on caregiving and living arrangements. Children rated themselves as significantly more depressed at pretest than their caregivers rated them, but at posttest this difference diminished. However, the majority of children remained depressed throughout the study. Pretest and posttest comparisons suggest that the treatment intervention may have enabled children to develop a more mature concept of death. Mixed outcomes and the methodological limitations of the study allow for multiple interpretations. Nevertheless, modest results reported here may encourage other clinical researchers to build on this early effort. Better understanding of how to treat bereaved children must await controlled, longitudinal research.

Abstract
PURPOSE:
The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adultsfollowing the loss of a parent to cancer. METHOD: This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. RESULTS: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. CONCLUSION: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss

medicinsk avhandling

Sammanfattning
Den här skriften handlar om hur anhöriga till barn och unga med flerfunktionsnedsättning har gjort för att ta vara på livets möjligheter. Du möter Ellen, 8 månader, Elvira, 3 år, Miles, 5 år, Diamanda, 6 år, Hannes, 13 år, Liv, 14 år och Kim, 21 år. Deras anhöriga berättar bland annat om vikten av att träffa andra i liknande situation, att våga skaffa syskon och att ta vara på sig själv som förälder för att förebygga psykisk och fysisk ohälsa. Men de berättar också om barnets behov av att förebygga andningsproblem och att som förälder behöva möta okunskap och fördomar om barnets livskvalitet. Vi får också veta hur de gått till väga för att skapa ett bra liv för hela familjen med hjälp av personlig assistans och särskilt boende.

Foto: Anna Pella

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

In an ageing society, families may have an important role in the caretaking and well-being of the elderly. Demographic changes have an impact on the size and structure of families; one aspect is how intergenerational support is distributed when there is a need for support to both older and younger generations at the same time. Another vital aspect of the provision of care for the elderly is geographic proximity. This study is oriented towards the potential "both-end carers" i.e. persons who have grandchildren in potential need of care while still having living ageing parents. The incidence of having grandchildren and having living parents at age 55 and the proximity between generations is described using Swedish register data. The results show that the share of 55-year-olds who are grandparents decreased dramatically from 70% to 35% between 1990 and 2005. As expected, more 55-year-olds have living parents—a proportion that increased from 37% to 47% during this period. As a result of delayed childbearing among the children of these cohorts, the likelihood of belonging to a four-generation family among 55-year-olds has not increased, despite increased longevity. Furthermore, most individuals live within daily reach of their kin and no evidence was found of a trend of increasing geographic distances between generations.

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

Despite the well‐known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long‐term illness, and associations with health‐seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004–2014, an annually repeated, large sample, cross‐sectional, population‐based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non‐adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00–1.22), and non‐adherence (adjusted OR 1.22; 95% CI 1.13–1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51–1.67) and non‐adherence (adjusted OR 1.26, 95% CI 1.17–1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non‐adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health‐seeking behaviour and non‐adherence to prescribed medication.

Abstract
This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.

This mixed-method study investigated the use of a bibliotherapy intervention that was designed specifically for preteen siblings of children with autism. Bibliotherapy is a facilitated method in which books related to participants' issues are used in order to help develop their insight about circumstances they share. Approximately one million siblings of children with autism have unique life circumstances that only those with similar lives can understand. Siblings, an intricate part of the dynamic family system, are often excluded from social services that are available to parents and children with autism. Siblings of children with autism can benefit from support, too; however, intervention research that investigates the effectiveness of supporting siblings of children with autism is limited.

The purposes of this study were to measure the effectiveness of a bibliotherapy intervention and to examine whether participants progressed through the three stages of bibliotherapy, increased their knowledge of autism, and whether interactions with their family members changed as a result of engaging in bibliotherapy sessions. Six participants, male and female, attended six bibliotherapy sessions. The book Rules (Lord, 2006) was the catalyst for the sibling discussion and activities that were a part of each bibliotherapy session. Pre and post surveys, sibling comments expressed during the bibliotherapy sessions, and sibling journal entries were used to collect data. The data were then analyzed using the Page Test for Ordered Alternatives and the Wilcoxon Signed-Ranks test (WSR). Results indicated statistically significant outcomes for increasing autism knowledge and nonstatistically significant results for progressing through the three stages of bibliotherapy and changes in family interactions. However, parents reported that the participant siblings demonstrated an increase in understanding and patience for their brothers with autism, and the siblings reported overall satisfaction with the bibliotherapy intervention. Results, implications, and recommendations for future research are provided.

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

Aim: The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders. Methods: Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview. Results: The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. Results also suggested high levels of burden for caregivers concerning difficulties with mental health services. Conclusion: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.

Aim: The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders.

Methods: Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview.

Results: The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. Results also suggested high levels of burden for caregivers concerning difficulties with mental health services.

Conclusion: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.

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

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

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

Läsålder
6-9 år
Illustratör/Fotograf Jon Birch

If a grownup you love has bipolar disorder, what does that mean? In this friendly guide, 11-year-old Josh tells all about his dad's bipolar, including what mental illness is, and how it can affect patients and their families. The guide explains in child-friendly terms how different types of bipolar affect people's feelings and behaviour. It is a comforting book that prepares young readers for the hard parts of knowing someone with bipolar, while communicating that bipolar is nothing to be afraid or ashamed of. Providing an excellent starting point for discussion both at home and in the classroom, it also includes a helpful list of recommended sources for additional support.

BACKGROUND:
More evidence of the efficacy of caregiver interventions is needed. The aim of this study was to evaluate whether counselling in the home setting reduces the caregiver burden.
METHODS:
Thirty-six patients after stroke, median age 53 years, with a close family member, were selected for an evaluation of the burden of care and 35 participated. They were part of a randomized controlled trial, comparing rehabilitation in the home setting with outpatient rehabilitation. In the home setting, counselling about the stroke and its consequences was included. Assessments with the Caregiver Burden scale were made at 3 weeks, 3 months and one year after discharge.
RESULTS:
The burden of the 2 groups did not differ. After the intervention, there was a tendency to a lower burden for the home setting. The burden for the home setting was then unchanged from 3 weeks to 1 year, while outpatient rehabilitation showed a reduced burden over time. For the home setting, significant correlations to activity level were seen after the intervention.
CONCLUSION:
A positive effect of counselling was seen, as the home setting burden tends to be lower after the intervention, while outpatient rehabilitation seems to adjust with time. The results suggest that counselling reduces burden and the remaining burden is associated with the patient's ability.

Abstract [en]
Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients.

Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory.

Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative's safety net. A percieved inability to improve their loved one's well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death.

Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient's experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

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

According to the Maternal and Child Health Bureau (MCHB) definition, which was later adopted by the American Academy of Pediatrics (AAP), "children with special health care needs are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally."1 Primary care pediatricians and other professionals caring for children with special health care needs generally acknowledge the importance of and the need for coordination of care. New initiatives from health care reform and managed care are reshaping the traditional direct clinical care role of the primary care pediatrician to include gatekeeper and coordination roles. This transition to managed systems of care from traditional fee-for-service care has important implications for aspects of care coordination. The primary care pediatrician may be required to assume even greater responsibility for providing care coordination for their patients under capitated arrangements. This policy statement reviews the importance of the primary care pediatrician's role in care coordination in the context of the medical home.

Care management among informal caregivers includes care-related discussions with other family members or the care recipient about the arrangements for formal services and financial matters, doing relevant paperwork, and seeking information. The study examines the prevalence of this type of care , the circumstances under which it occurs, its variations by caregiver characteristics and its impact on the carers, using a sub-sample of 1847 full-time employed individuals who were assisting older relatives drawn from the Canadian 'Work and Family Survey'. The analysis shows that managerial care is common, distinct from other types of care, and that most care-givers provide both managerial and direct care. Care management includes both the orchestration of care and financial and bureaucratic management. Providing managerial care generates stress amongst women and interferes with work amongst men.

Community-based frail older adults, burdened with complex medical and social needs, are at great risk for preventable rapid rehospitalizations. Although federal and state regulations are in place to address the care transitions between the hospital and nursing home, no such guidelines exist for the much larger population of community-dwelling frail older adults. Few studies have looked at interventions to prevent rehospitalizations in this large segment of the older adult population. Similarly, standardized disease management approaches that lower hospitalization rates in an independent adult population may not suffice for guiding the care of frail persons. Care management interventions currently face unique challenges in their attempt to improve the transitional care of community-dwelling older adults. However, impending national imperatives aimed at reducing potentially avoidable hospitalizations will soon demand and reward care management strategies that identify frail persons early in the discharge process and promote the sharing of critical information among patients, caregivers, and health care professionals. Opportunities to improve the quality and efficiency of care-related communications must focus on the effective blending of training and technology for improving communications vital to successful care transitions.

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.

Abstract
AIM:
The task of managing care for patients with Parkinson's disease (PD) often falls upon a family member taking on the role as a caregiver (CG) implying a burden on these CGs. The aim of this study was to evaluate CG strain of PD patients with regarding different psychosocial domains and the influence of PD/CG duration of PD.
METHODS:
A cross-sectional telephone interview survey of 451 CGs randomly selected from the registry of the Swedish Parkinson's Disease Association. A structured questionnaire covering sociodemographic, psychosocial, and general CG factors, sleep and depression of the CG as well as issues of the patient's disease was used by 4 independent interviewers blinded to the study objective.
RESULTS:
Four hundred and four of 451 (90%) CGs responded with a mean age of 68.5 years with 62% females. The results were stratified in 3 groups with regard to disease duration of the PD patient, 0-4, 5-10, and >11 years, respectively. General health condition of the CGs was regarded satisfactory independent of disease duration. Insufficient sleep and disease related stress were considered to be prominent in 36% and 61%, respectively, being significantly more prominent in the group with the longest disease duration. Decreased mood was reported in 31% with no difference between groups. More than 30% of CGs also experienced daily problems with tiredness and sleep disturbance; 27% hypertension; 17% muscle strain, headache and fatigue; and 14% gastro-intestinal problems most items regardless of disease duration. The most troublesome symptoms of the patients to the CGs were reported to be the motor dysfunction (58%). More than half experienced little or no understanding of their situation.
CONCLUSION:
CGs are afflicted with strain and burden in many psychosocial and somatic domains despite satisfactory general wellbeing independent of disease duration. The longer disease duration, and, accordingly CG duration, the more impact on certain domains of CG burden, however, with little understanding of their situation. These findings should be given greater consideration when organizing and planning for PD care in the health care system and the community.

Changes that can accompany stroke may create considerable stress for individuals caring for the affected person. This study explored the coping process for nine rural-dwelling caregivers of persons with stroke and the responses of these caregivers to a Web-based support program. The qualitative data management program QSR N 5 was used to analyze quotes from telephone interviews and computer entries. Stories of how caregivers came together and supported one another emerged from the data collected as part of a larger study that examined the experience of caring. Friedemann's framework of systemic organization guided data analysis and interpretation. Actions demonstrated by the caregivers illustrated the process of crisis resolution through family togetherness in which nurses were included. The findings of this study aided in understanding this process and gave direction for nurses working with such clients.

Caregivers who suffer grief after the death of a family member with dementia have received little attention in research. In this Swedish study, 30 caregivers were interviewed less than 6 months after the death of a family member with dementia. The study explored the caregivers' experiences of bereavement and social support in two stages: during the caregiving period and following death, and examined any links between the two stages. Findings showed that a central dynamic in caregiver bereavement seemed to be the support experienced, as well as the possibility of having continued support from family and/or friends. Caregivers who reported more positive appraisals during the caregiver period were likely to feel relieved after the death of a relative. They also tended to be more satisfied with their social support. (AKM).

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

Objectives: Recent findings of better health outcomes in older caregivers than noncaregivers suggest a healthy caregiver hypothesis (HCH) model may be more appropriate than the stress process model for evaluating the health effects of caregiving. In a cross-sectional study, we tested the HCH on two cognitive domains: verbal memory and processing speed. Method: Participants from the Caregiver Study of Osteoporotic Fractures who had a 2-year follow-up interview were categorized as continuous caregivers (n = 194), former caregivers (n = 148), or continuous noncaregivers (n = 574). The Hopkins Verbal Learning Test (HVLT; memory) and Digit Symbol Substitution Task (DSST; processing speed) were administered at the follow-up interview. Results: Continuous caregivers had better memory performance and processing speed than continuous noncaregivers: adjusted mean scores for HVLT were 18.38 versus 15.80 (p < .0001), and for DSST were 35.91 versus 34.38 (p = .09). Discussion: Results support the HCH model for cognitive outcomes in older women caregivers; however, the relationship may be domain specific.

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

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