Bibliotek

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.

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.

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

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

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

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

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

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

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

Stiftelsen Stockholms läns Äldrecentrum har undersökt situationen för yngre personer med demenssjukdom (yngre än 65 år) och deras anhöriga. Fokus har lagts på att beskriva de specifika problem och behov som finns och en kartläggning har gjorts av vilka befintliga resurser som erbjuds för att möta upp behoven.

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

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

Akademisk Avhandling

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

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

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

Rapporter från Anhörig 300-konferenser våren 2001,Anhörig 300

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

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

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

Design.  A randomised experimental design was used.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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.

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

Methods: Between 1978 and 1988, 18-to-25-year-old non-alcohol-dependent Caucasian male drinkers participated in the San Diego Prospective Study alcohol challenges. The paradigms included self-reports of feelings of "High" and "Intoxication," as well as alcohol-related changes in body sway. In recent years, 40 18-to-29-year-old offspring of 25 of these original probands were tested using a similar protocol

Results: Despite the passage of two decades between laboratory sessions across generations, for family history positive (FHP) subjects, significant positive correlations were observed for subjective feelings of intoxication and body sway after alcohol. Parent-offspring correlations were in the predicted direction for subjective feelings for family history negatives (FHNs), but were not significant. Across offspring, LR values were lower for FHPs overall, with significant differences at 60 or 90 min for five items

Conclusions: The similarities in LR across generations, while not proving heritability, are consistent with prior reports regarding genetic influences in the LR to alcohol. The significant correlations across generations and over two decades support the reliability of the alcohol challenge results.

Abstract

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention

This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.

Abstract
Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

Doktorsavhandling

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

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

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

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