Bibliotek

This paper reviews one aspect, impact, of the forthcoming assessment of research in UK universities, the Research Excellence Framework (REF), and examines its meaning and potential for enhanced partnerships between social work practice and academia in the context of the current economic crisis. Examples of case studies being developed to show how research has societal impact are described and some of the complexities of what, on the surface appears to echo social work's desire to make a positive difference to the Lives of people in society, are drawn out. The importance of the REF for the integration of social work practice and academia has been rehearsed many times. This paper argues that making an impact is everybody's concern and practitioners and those who use social work services and their carers have a role to play in its creation and identification.

Several studies of frail older people have focused on the relationship between formal and informal care, while others have examined the character of inter-generational relationships. Yet knowledge of the significance of the informal-support networks of older people who receive formal care is still scarce. The aim of this paper was to explore how older Swedes who receive formal elder-care experienced their informal support networks. The findings presented emanate from a qualitative case study. The structural, interaction and functional dimensions of the support networks were the main analytical tools. In the study population, the size of the formal support network varied from one to 12 people (or categories of people), and the size of the informal support network varied from one to six people (or categories of people). The main results demonstrate the importance of informal support with reciprocal relationships, and the value of confidants and emotional support, both of which contribute to feelings of belonging, security and wellbeing. A well-functioning formal and informal support network allows individuals to maintain autonomy in old age, even when they have to depend on help from others

Longitudinal studies of children of alcoholics in a community context are rare, but are of special interest because they provide the opportunity to study families with alcoholic parents who do not reach clinical settings and with offspring who do not receive professional help. The current study reports on the 65 offspring of alcoholics who participated in the Kauai Longitudinal Study. The extensive data on these analyses included questionnaires and interviews of both children and adults that were collected over a 30-year period. The data showed that individuals who coped effectively with the trauma of growing up in an alcoholic family and who became competent adults relied on a significantly larger number of sources of support in their childhood and youth than did the offspring of alcoholics with coping problems by age 32.

The aim of the study was to investigate the role of community mental health nurses in educating clients and families about schizophrenia. A random sample of community mental health nurses was surveyed using a postal questionnaire. Results showed that most nurses did not use a specific approach for education. Families were educated when clients were admitted to hospital and clients were included when they regained the ability to process information. All nurses provided practical advice to families coping with clients' unpredictable behaviours. The client's home was mostly used for education. Clients and families were often in denial of the illness. Time constraints restricted the nurses' role of providing education. Nurses reported that psycho-educational theories or models were not incorporated into their basic professional education. Nurses require the necessary knowledge, skills and confidence to competently perform this role

The role of ethnicity in care of elderly Finnish immigrants Most Western countries are becoming increasingly multicultural because of immigration. Many of these immigrants grow old in a second homeland and will need health and elderly care in the future. In Sweden, the largest immigrant group comes from its neighbouring country, Finland. Little is known about how this group experiences present health care or their expectations of future elderly care. The overall aim of the thesis was to describe and to deepen the understanding of elderly Finnish immigrants experiences of health care and elderly care and the role that ethnicity played in these experiences. The specific aims were to: elucidate the elderly Sweden-Finns experiences and beliefs about health care in Sweden, in order to gain an understanding of how ethnic background affects the elderly immigrated persons experiences and beliefs in the host country (I); illuminate the role that culturally appropriate care plays in relation to the elderly Finnish immigrants wishes and expectations of institutional elderly care (II); describe and compare the elderly Finnish immigrants perceptions of health care, both among those who have continued to live in Sweden and those who have re-migrated to Finland (III); describe the cultural adjustments that had been made at a specific elderly care setting, the Finnish Home, and illustrate the impact of cultural adjustments on care, as conditions that promoted the well-being of the residents (IV). All the participants were born in Finland and Finnish was their native language and they lived (I-II and IV) or had lived in Sweden. In I-II, the 39 participants were 75 years or older and in III-IV, 65 years or older. In III, 217 persons participated in Finland, and 643 persons participated in Sweden. All residents, staff and visitors of Finnish Home participated in IV. Qualitative interviews were conducted in the participants homes (I-II), a mailed questionnaire was used in Study III, and an ethnographic study design was used in Study IV. Several different analysis methods were used: Hermeneutical ad hoc analysis (I), latent content analysis (II), statistical analysis (III), and an ethnographic method (IV). The results show that the Swedish health care system is congruent with the elderly Finnish immigrants expectations (I), and their experiences of care were good (III). Their experiences of the Finnish health care system were also good (III). However, sharing the same ethnic background as the care providers was believed to lead to better care (I). When thinking about future elderly care, the elderly Finnish immigrants wished to feel familiarity, continuity in life, security, and companionship. This could be achieved either in the well-known physical environment of their current homes, in an elderly care setting in their part of town, or in a well-known socio-cultural environment at an elderly care setting where Finnish was spoken and the care providers and fellow-residents were Finns (II). When being cared for in a culturally adjusted elderly care setting, the care became culturally congruent as the care providers, and the residents played the same language and ethnicity game (IV). The conclusions from the thesis show that ethnicity and ethnic identity, a shared mother language, and the place, play an important role in the care of elderly Finnish immigrants. In addition to this, the elderly Finns experienced a feeling of at-homeness when being cared for by members of their own ethnic group, in a familiar place, with people who spoke the same native language.

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

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

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

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

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

This study investigated the extent to which parental Attention-Deficit/Hyperactivity Disorder (ADHD) symptoms impact child and parent outcomes following a multimodal family-school intervention, the Family School Success (FSS) program, when compared to an active-control condition (CARE). Participants were 139 children with ADHD (67% male; 91% non-Hispanic; 77% Caucasian; Grades 2-6) and their primary caretaker (91% female; ages 26-59) who participated in a randomized clinical trial evaluating the efficacy of FSS. Associations were examined between parent-reported ADHD symptoms at baseline and intervention outcomes reported by parents and teachers after treatment and at a 3-month follow-up, including child homework and classroom impairments, child ADHD and oppositional defiant disorder symptoms, parenting behaviors, and parent-teacher relationship quality. Across both treatment conditions, parental ADHD was not associated with parent or child outcomes at postassessment. However, differences emerged between the two treatment groups at follow-up for parents with ADHD, particularly when an empirically supported symptom cutoff was used to identify parents at risk for having ADHD. In FSS, but not in CARE, parental ADHD was associated with declines in treatment gains in the quality of the parent-teacher relationship and the child's homework performance. Parents at risk for ADHD had difficulty maintaining treatment effects for themselves and their child in the FSS intervention but not in CARE. The supportive and educational components central to the CARE intervention may be helpful in promoting the sustainability of psychosocial interventions for children with ADHD who have parents with elevated ADHD symptoms.

This article reviews current knowledge concerning the relationship between peer support and adjustment outcomes and experiences for parentally bereaved children. A brief overview of the effects of parental bereavement and factors influencing immediate and long-term adjustment is provided, followed by an overview of peer-provided social support and its relationship to adjustment. Current findings on the predictive value of peer support for adjustment are then discussed, with emphasis on the reciprocal positive and negative influences that peer support and adjustment (or lack thereof) exert. Areas of weakness and neglect within this domain are noted, with a focus on methodological issues, peer-relevant consequences of bereavement in need of further research, and the need for study of particular vulnerable subgroups.

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

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

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

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

Abstract
Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure.
Design: A co- design process built on core concepts and ideas embedded in co-design methodology.
Data sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and ap-proval of the final version of the support programme.
Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal.
Conclusion: Co- design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process.
Relevance to clinical practice: Emphasizing equal involvement of end users (e.g. car-ers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning oppor-tunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme

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

The present article describes two studies designed to identify some of the rules that may govern interactions with bereaved persons and whether those rules are different for suicidal deaths, as compared with death by accident or natural causes. In the first study, with university students, 28 rules were identified. The pattern of results suggests that the rules for suicide are more constraining; that is, judgments about the existence of social rules tend to be more inclusive and extreme, in a "should not do" direction, when the death is suicidal. In the second study, with adult citizens, 13 possible rules were examined. The pattern of results confirmed the findings obtained in the first study — that interacting with the survivors of a suicidal death was seen as a more constraining situation with a predominance of proscriptive rules. It was suggested that while individuals may feel greater compassion for the survivors of suicide, they may avoid the situation for fear of violating one of the proscriptive rules.

Dependency Drug Courts (DDCs) are a growing method of addressing the functional status and reunification success of families involved in child welfare and affected by substance use disorders. Despite widespread interest in DDCs, few evaluations have appeared in the literature to help inform the discussion about their effectiveness. This article provides a description of various types of DDCs and reports 24-month reunification rates from the Sacramento DDC. Results indicated that DDC participants had higher rates of treatment participation than did comparison participants. In addition, at 24 months, 42% of the DDC children had reunified versus 27.2% of the comparison children. There were no differences in treatment completion or child reunification rates by parent's primary drug problem. Rates of recidivism were extremely low for both the DDC and comparison groups and did not differ significantly. The results of the present study are encouraging and suggest that rigorous, controlled studies are merited to further evaluate the effectiveness of DDCs.

This study describes the Swedish debate on the role of family and state in care of elderly persons. It provides empirical evidence on the shifting balance of family, state, and market in the total panorama of elderly care. Secondary analysis of older (1954) and more recent data sources (1994 and 2000) is used to assess living arrangements and care patterns for persons 75 years or older living in the community. Results revealed that total spending on aged adults has stagnated, and institutional care is shrinking in absolute and relative terms, but public Home Help for elders in the community is decreasing even more. Family members increasingly shoulder the bulk of care, but privately purchased care also seems to expand. This study calculates how public and informal care changed between 1994 and 2000: Informal care is estimated to have provided 60% of all care to elders in the community in 1994 and 70% in 2000. The results parallel a crisis of legitimacy of public elderly care in Sweden. They also call into question various metaphors used to describe patterns of care. (PsycINFO Database Record (c) 2007 APA )

Abstract

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

This meta-analytic review examines the association between attachment and internalizing symptomatology during childhood, and compares the strength of this association with that for externalizing symptomatology. Based on 42 independent samples (N = 4,614), the association between insecurity and internalizing symptoms was small, yet significant (d = 0.15, CI 0.06~0.25) and not moderated by assessment age of internalizing problems. Avoidance, but not resistance (d = 0.03, CI -0.11~0.17) or disorganization (d = 0.08, CI -0.06~0.22), was significantly associated with internalizing symptoms (d = 0.17, CI 0.03~0.31). Insecurity and disorganization were more strongly associated with externalizing than internalizing symptoms. Discussion focuses on the significance of attachment for the development of internalizing versus externalizing symptomatology.

This study addresses the extent to which insecure and disorganized attachments increase risk for externalizing problems using meta-analysis. From 69 samples (N = 5,947), the association between insecurity and externalizing problems was significant, d = 0.31 (95% CI: 0.23, 0.40). Larger effects were found for boys (d = 0.35), clinical samples (d = 0.49), and from observation-based outcome assessments (d = 0.58). Larger effects were found for attachment assessments other than the Strange Situation. Overall, disorganized children appeared at elevated risk (d = 0.34, 95% CI: 0.18, 0.50), with weaker effects for avoidance (d = 0.12, 95% CI: 0.03, 0.21) and resistance (d = 0.11, 95% CI: -0.04, 0.26). The results are discussed in terms of the potential significance of attachment for mental health.

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

For decades, scholars have wrestled with the notion that old age is characterized by social isolation. However, there has been no systematic, nationally representative evaluation of this possibility in terms of social network connectedness. In this paper, the authors develop a profile of older adults' social integration with respect to nine dimensions of connectedness to interpersonal networks and voluntary associations. The authors use new data from the National Social Life, Health, and Aging Project (NSHAP), a population-based study of non-institutionalized older Americans aged 57-85 conducted in 2005-2006. Findings suggest that among older adults, age is negatively related to network size, closeness to network members, and number of non-primary-group ties. On the other hand, age is positively related to frequency of socializing with neighbors, religious participation, and volunteering. In addition, it has a U-shaped relationship with volume of contact with network members. These findings are inconsistent with the notion that old age has a universal negative influence on social connectedness. Instead, life course factors have divergent consequences for different forms of social connectedness. Some later life transitions, like retirement and bereavement, may prompt greater connectedness. The authors close by urging increased dialogue between social gerontological and social network research

PURPOSE:
There is a lack of comprehensive cost-of-illness studies in bipolar disorder, in particular studies based on patient-level data. The purpose of this study was to estimate the societal cost of bipolar disorder and to relate costs to disease severity, depressive episodes, hospitalisation and patient functioning.
METHODS:
Retrospective resource use data in inpatient and outpatient care during 2006-2008, as well as ICD-10 diagnoses and Global Assessment of Functioning (GAF) scores, were obtained from the Northern Stockholm psychiatric clinic with a catchment area including 47% of the adult inhabitants in Stockholm. This dataset was combined with national register data on prescription pharmaceuticals and sick leave to estimate the societal cost of bipolar disorder. The study was conducted from a societal perspective, with indirect costs valued according to the human capital method.
RESULTS:
The average annual cost per patient was 28,011 in 2008 (n = 1,846). Indirect costs due to sick leave and early retirement represented 75%, inpatient costs 13%, outpatient costs 8%, pharmaceuticals 2% and community care another 2% of the total cost. Total costs were considerably higher during mood episodes (six times higher than in remission), for hospitalised patients (55,500 vs. 22,200) and for patients with low GAF scores.
CONCLUSIONS:
The high cost of bipolar disorder is driven primarily by indirect costs. Costs were strongly associated with mood episodes, hospitalisations and low GAF scores. This suggests that treatment that reduces the risk for relapses and hospitalizations and improve functioning may decrease both the societal cost of bipolar disorder and patient suffering.

Parents who lose a child by suicide have elevated risks of depression. No clinical prediction tools exist to identify which suicide-bereaved parents will be particularly vulnerable; we aimed to create a prediction model for long-term depression for this purpose. During 2009 and 2010 we collected data using a nationwide study-specific questionnaire among parents in Sweden who had lost a child aged 15-30 by suicide in years 2004-2007. Current depression was assessed with the Patient Health Questionnaire (PHQ-9) and a single question on antidepressant use. We considered 26 potential predictors assumed clinically assessable at the time of loss, including socio-economics, relationship status, history of psychological stress and morbidity, and suicide-related circumstances. We developed a novel prediction model using logistic regression with all subsets selection and stratified cross-validation. The model was assessed for classification performance and calibration, overall and stratified by time since loss. In total 666/915 (73%) participated. The model showed acceptable classification performance (adjusted area under the curve [AUC] = 0.720, 95% confidence interval [CI] 0.673-0.766), but performed classification best for those at shortest time since loss. Agreement between model-predicted and observed risks was fair, but with a tendency for underestimation and overestimation for individuals with shortest and longest time since loss, respectively. The identified predictors include female sex (odds ratio [OR] = 1.84); sick-leave (OR = 2.81) or unemployment (OR = 1.64); psychological premorbidity debuting during the last 10 years, before loss (OR = 3.64), or more than 10 years ago (OR = 4.96); suicide in biological relatives (OR = 1.54); with non-legal guardianship during the child's upbringing (OR = 0.48); and non-biological parenthood (OR = 0.22) found as protective. Our prediction model shows promising internal validity, but should be externally validated before application. Psychological premorbidity seems to be a prominent predictor of long-term depression among suicide-bereaved parents, and thus important for healthcare providers to assess.

Abstract

ObjectivesThis umbrella review aimed to evaluate whether certain interventions can mitigate the negative health consequences of caregiving, which interventions are more effective than others depending on the circumstances, and how these interventions are experienced by caregivers themselves.DesignAn umbrella review of systematic reviews was conducted.Data sourcesQuantitative (with or without meta-analyses), qualitative and mixed-methods systematic reviews were included.Eligibility criteriaReviews were considered eligible if they met the following criteria: included primary studies targeting informal (ie, unpaid) caregivers of older people or persons presenting with ageing-related diseases; focused on support interventions and assessed their effectiveness (quantitative reviews) or their implementation and/or lived experience of the target population (qualitative reviews); included physical or mental health-related outcomes of informal caregivers.Data extraction and synthesisA total of 47 reviews were included, covering 619 distinct primary studies. Each potentially eligible review underwent critical appraisal and citation overlap assessment. Data were extracted independently by two reviewers and cross-checked. Quantitative review results were synthesised narratively and presented in tabular format, while qualitative findings were compiled using the mega-aggregation framework synthesis method.ResultsThe evidence regarding the effectiveness of interventions on physical and mental health outcomes was inconclusive. Quantitative reviews were highly discordant, whereas qualitative reviews only reported practical, emotional and relational benefits. Multicomponent and person-centred interventions seemed to yield highest effectiveness and acceptability. Heterogeneity among caregivers, care receivers and care contexts was often overlooked. Important issues related to the low quality of evidence and futile overproduction of similar reviews were identified.ConclusionsLack of robust evidence calls for better intervention research and evaluation practices. It may be warranted to avoid one-size-fits-all approaches to intervention design. Primary care and other existing resources should be leveraged to support interventions, possibly with increasing contributions from the non-profit sector

Abstract [en]

Working carers (WKCs) combine paid work with informal care. Little is known about this important group of carers, which is expected to increase in number due topopulation ageing and economic trends. WKCs are beneficial for society but thecombination of work and care roles has consequences for their social and financialcircumstances as well as their health. This thesis explores the caregiving situation ofWKCs.

Study I was a scoping review of research on the challenges of and solutions for thecombination of paid work and care and the role of technologies in supportingWKCs. Results included a conceptual framework which identified high and/orcompeting demands as a key challenge solved by formal support. Web-based andcommunication technologies were seen to be a potential beneficial solution tosupport WKCs. Nevertheless, barriers existed in some instances, preventing theiroptimal use.

Studies II and III were based on data from a 2018 survey of a stratified randomsample of the Swedish population. Study II described informal care provision andreceived support among Swedish female and male WKCs. Female compared tomale WKCs cared more often alone, with more intensity, experienced care as moredemanding while their ability to work was reduced to a greater extent. Study III determined the caregiving-related factors associated with WKCs’ reducedability to work and experience of caregiving as demanding. A key finding was thatpsychological stress and financial problems due to caregiving increased the odds ofboth experiencing caregiving as demanding and a reduced ability to work, whilefinding caregiving satisfying decreased the odds of both.

Study IV was an interview study of WKCs’ experiences during the COVID-19pandemic. WKCs’ positive experiences included the delivery of support by distancevia digital technologies and more time with the care-recipient. Negative experiencesincluded the fear of becoming sick, new challenges at work, and the cancellation ofhome and community-based services for the care recipient.

This thesis contributes new knowledge on the situation of WKCs in Sweden. Itsfindings have implications for how policy can more appropriately and effectivelyaddress WKCs’ needs and preferences for support and their combination of workand care roles.

Abstract [en]

Adolescent young carers (AYCs) are a sub-group of young carers who carry out significant or substantial caring tasks and assume a level of responsibility which would usually be associated with an adult. They are a potentially vulnerable group of minors because of the risk factors associated with their caring role. AYCs face a critical transition phase from adolescence to adulthood often with a lack of tailored support from service providers. The recently completed European funded ‘ME-WE’ project, which forms the focus of this paper, aimed to change the ‘status quo’ by advancing the situation of AYCs in Europe, via responsive research and knowledge translation actions. This paper outlines the participatory, co-creation approach employed in the project to optimise AYC’s involvement. It describes the ethical framework adopted by the project consortium to ensure the wellbeing of AYCs within all project activities. Ethical issues that arose in the field study work in all six countries are presented, followed by a discussion of the level of success or otherwise of the consortium to address these issues. The paper concludes with lessons learned regarding ethically responsible research with and for AYCs that are likely transferable to other vulnerable research groups and pan-European projects.

Abstract:
This study examined Swedish suicide bereaved individuals' use of different resources in their grief work and how they value these resources. The material consisted of a web-based survey, which was analyzed with quantitative methods. The results showed that the psychosocial ill-health was severe among the suicide bereaved participants and that a majority used digital resources in their grief work. The propensity to engage in online support groups or memorial websites was not predicted by the severity of psychosocial consequences following the suicide. However, multiple regressions showed that higher online support group activity predicted more satisfaction with current psychosocial health, while memorial websites seemed to have the opposite effect. This study not only indicates that some digital resources, for example, online support groups, may be an effective way of coping with grief related to suicide loss, but also suggests that memorial websites may increase rumination and in this way cause emotional distress

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

Although multisensory environments (MSE) are popular in schools educating students with severe disabilities, little is known about how teachers are using them. This paper reports on interviews with five teachers from two special schools who agreed to be videorecorded while using the room with their classes and who were interviewed about their perspectives on MSEs and about the activities observed in their classes. Most teachers seemed to believe that use of the MSE or the equipment in it would have automatic and remarkably wide ranging benefits for their students. There was more limited evidence of focused programing, teaching and monitoring practices that would result in functional outcomes for students. Given lack of empirical support for educational outcomes from MSE use, the authors call for more research on use of MSEs and for education authorities, schools, and teachers to more actively monitor and evaluate the effects of their use.

Policy guidelines insist that people with dementia should be involved in decisions about key life choices and transitions. However, as dementia affects both cognitive and communication difficulties, it becomes increasingly difficult to do this, and innovative and effective ways to support people with dementia and their carers to interact with each other are needed. This project, funded by Joseph Rowntree Foundation, examined if Talking Mats, a low-tech communication framework, could support family carers and people with dementia to discuss issues around daily living with each other. The fieldwork phase took place from September 2008 to May 2009. Eighteen couples (person with dementia and their family carer) from Scotland and the North of England were involved. The couples were visited in their own homes and asked to discuss together four topics (Personal Care; Getting Around; Housework; Activities) under two different conditions: (i) using the Talking Mats framework and (ii) using their usual communication methods (UCMs). After the interviews, each participant was asked separately to complete a short questionnaire (Involvement Measure), which included five questions to evaluate how involved s/he felt in each type of discussion and a final question to measure satisfaction with the overall discussion. The findings show that both people with dementia and their carers feel more involved in discussions about how they are managing their daily living when using the Talking Mats framework, compared with their UCM. They also feel more satisfied with the outcome of those discussions. The use of Talking Mats could result in increased well-being and positive adjustment to accepting increasing levels of care for people with dementia. In addition, it could improve the relationship between the person with dementia and family carers, if all involved feel that the views of the person with dementia and the family carer have truly been acknowledged. Adapted from the source document.

The EDE is a semistructured interview which has been developed as a measure of the specific psychopathology of anorexia nervosa and bulimia nervosa. To establish its discriminant validity it was administered to 100 patients with anorexia nervosa or bulimia nervosa and to 42 controls. The two groups differed significantly on all items. Five subscales were derived on rational grounds and evaluated on the two populations. The alpha coefficients for each subscale indicated a satisfactory degree of internal consistency. The EDE provides clinicians and research workers with a detailed and comprehensive profile of the psychopathological features of patients with eating disorders.