Bibliotek

Sixty-four children from 37 families with an alcoholic parent were compared with 80 children from 45 families that did not have an alcoholic parent on measures of intelligence, cognitive achievement, psychological and physical disorders, impulsivity-hyperactivity, social competence, learning problems, behavior problems, and self-esteem. On nine of 17 tests, the children of alcoholic parents scored less well than did the children of nonalcoholic parents, although both were within normal ranges. Factor analysis yielded significant differences between the two samples in emotional functioning and cognitive abilities and performance; marginally significant differences were found with respect to behavior problems.

The aim was to investigate collaboration between relatives of frail elderly patients and nurses in acute hospital wards, and to develop and test an instrument to investigate, from the relatives? perspective, dimensions of collaboration in this context and the association between collaboration and satisfaction with the hospital care trajectory. The underpinning assumption for the study was that relatives hold knowledge of the patients? situation, which is important for nurses to make a relevant and sufficient care plan. The first two studies were qualitative, investigating relatives? and nurses? experiences of the collaboration with each other. Eight relatives of elderly patients ³ 75 years of age, living at home and dependent on formal and informal help participated. Eight nurses (6 RN + 2 LPN) who conducted the discharge of the elderly patient participated in the second study. In the third study an instrument was developed for measuring collaboration, its prerequisites and outcomes from the relatives? perspective, and put through psychometric testing. In this study, and in the fourth study, which investigated the association between collaboration and satisfaction with the hospital care trajectory, 156 relatives of elderly patients participated. The context was acute medical and geriatric wards in two Danish hospitals. The lived experience of being a relative to a frail elderly patient revealed itself in two main essences: The history reflected the relationship and care history and was the frame of reference in which the hospital admission was interpreted and understood. The constituents were: The adult child, Parent for my mother, It is always in the back of my mind and A full time job. The essence Standing Guard encompassed the encounter with the hospital system and the constituents were: My God, is it now?, Powerless, If you relax, you fail, Watchdog and case manager and Those poor, poor people. The main theme in the interviews with nurses was Encountering relatives ? To be caught between ideals and practice and reflected that the nurses seemingly held two sets of conflicting attitudes towards relatives and the collaboration with them: One ideal and in accordance with their professional values, and another seemingly governing collaboration in practice. Themes were: The coincidental encounter ? the collaboration, which reflected that though ideally described as a structured process, collaboration appeared to be coincidental and rare; and Relatives ? a demanding resource. The sub themes were: Flee or fight ? the nurses? response, A matter of prioritising ? Barriers and promoters, The unwritten rules and The new relatives ? the demanding and unrealistic relatives. A model for collaboration was developed from literature and constituted the basis for development of instrument variables and items. In the factor analysis (PCA) five factors were extracted: ?Influence on decisions?, ?Quality of contact with nurses?, ?Trust and its prerequisites?, ?Achieved information level? and ?Influence on discharge?. The factor analysis supported the assumption that collaboration was a multi-dimensional construct characterised by shared decision-making and exchange of knowledge and information, with prerequisites such as quality of the contact and communication based on trust and respect. The instrument was mainly reliable and valid, although caution should be made due to the sample being small, and the design being cross sectional. Systematic dropout indicated that the study might have missed the most strained, the oldest and the least educated relatives. Further testing after a reduction of items as well as revising of the wording in some items is warranted. Dimensions of collaboration were predictors for the relatives? satisfaction with the hospital care trajectory, and lower ratings of collaboration were significantly associated with lower level of satisfaction. Further, powerlessness, guilt, having provided help less than one year and not providing psychosocial help were predictors for relatives? satisfaction with the hospital care trajectory. Whereas relatives rated poorly on influence on decisions and exchange of knowledge and information, the contact and relationship qualities with nurses were seemingly more satisfactory, although accessibility of nurses appeared to be a problem.

Pediatric practices are faced with a growing demand that they address the
healthy development of their patients. As pediatric practices strengthen their role as medical
homes for their patients, they need either to provide expanded services or enhance their
capacity to coordinate that care. One option for enhancing the existing capacity of pediatric
practices is colocation with other providers and services in the same setting. This issue
brief examines what is currently known about the use of colocation and its benefits. The
literature and interviews used as information resources for the brief suggest that colocation
of services is not a single strategy but rather a complex set of relationships, organizational
structures, and other features meant to help practices deliver effective care. However, more
thorough examination of current colocation approaches is needed before advice can be
provided to practices considering this option.

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

Combined Individual Cognitive Behavior Therapy ang Parent Training for Childhood Depression: 2-to 3-year Follow Up.

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

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers' decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers' decisions and experiences about work and care. Key factors that impact on carers' decisions are: current and anticipated financial need; the constraints arising from receipt of carers' and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers' own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.

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

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

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

The forms and functions of expressive communication produced by 84 individuals with severe mental retardation were assessed, using a structured communication sampling procedure. Symbolic communication acts were produced by 39 participants, and 27 of these symbolic communicators produced one or more multiword/multisymbol utterances. Of the remaining participants, 38 produced intentional but nonsymbolic communication acts; 7 were not observed to produce any intentional communication. For all participants who produced intentional communication, there were significantly more imperative than declarative communication acts. Significant differences in the frequencies and functions of communication acts produced by these participants were associated with differences in their communication levels (contact gesture, distal gesture, or symbolic), age (child vs. adult), and residential status (community home vs. large facility).

The Communication Matrix [20] is an assessment instrument that is designed to evaluate the expressive communication skills of children with severe and multiple disabilities. It accommodates any type of communicative behavior, including forms of augmentative and alternative communication (AAC) such as picture systems, electronic devices, sign language and 3-dimensional symbols; pre-symbolic communication such as gestures, body movements, sounds, eye gaze and facial expressions; as well as the typical forms of communication such as speech and writing. It covers seven levels of communication observed in typically developing infants during the first two years of life. The instrument, which is widely used to assess children with severe acquired and congenital disorders in community and school settings, is appropriate for both inpatient and outpatient pediatric rehabilitation. Data from an associated database demonstrating the value of this tool for clinical service and research are presented. © 2010 - IOS Press and the authors. All rights reserved.

Background and aim: While the number of people suffering from Dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has Dementia experience their caregiving situation. Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements. Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers. Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.

The purpose of this qualitative study of families where a parent has cancer was to explore ways of informing the child of the parent's illness, how the child perceives the parent's emotional state, how the child copes with the parent's illness, and how this coping relates to the parent's coping and concerns for the child. Twenty-one children from 15 families and their parents were interviewed. In 13 families the mother was ill, in two the father. Children were aware of the facts of the illness, but there was limited emotional communication between the generations. The children were very observant of both the ill and the healthy parent's emotional condition. The children's observations and expressions led us to identify five coping strategies the younger generation used: Helping others, parentification, distraction, keeping it in the head, and wishful thinking. Both adaptive and destructive examples of parentification were found. Communication patterns and parental coping seemed to be highly related to the child's coping repertoire. Even though most children seemed to manage rather well, all children were strongly affected by the illness. The 'healthiest' adaptation related to factors within the family system, which has implications for the provision of help.

Abstract:
In light of current pressures within formal social care services, informal carers assume an important role in meeting the care needs of a growing number of older people. Research suggests relationships between care-giving and health are complex and not yet fully understood. Recently, wide-ranging associations between sleep and health have been identified, however, our understanding of the links between care-giving and sleep is limited at present. This study assesses longitudinal patterns in co-resident care-giving and problematic sleep among older people in the United Kingdom. Our sample included 2,470 adults aged 65 years and older from the UK Household Longitudinal Study. Problematic sleep was defined as two or more problems in going to sleep, staying asleep or sleep quality. Using logistic regression models, we assessed how co-resident care-giving status, intensity and transitions influence the likelihood of problematic sleep in the following year, adjusting for potential confounding factors. Adjusted analyses found co-resident care-givers were 1.49 (95% confidence interval = 1.06–2.08) times more likely to report problematic sleep in the following year, relative to those not providing care. Care-giving over 20 hours per week and continuous co-resident care-giving also significantly increased the odds of problematic sleep. This suggests older co-resident care-givers may be at greater risk of incurring sleep problems than non-care-givers. Further longitudinal research is needed to investigate care-giver-specific consequences of poor sleep.

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

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

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

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

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

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

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

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

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

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-inlaw. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of nonmarital cohabitation in mid-life.

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

The aim of this thesis was to describe how early triadic interaction between the newborn child and its mother and father begins, develops, and matures over the child's first 4 years of life. Systemic family theory and developmental theory are combined to go beyond the "mother-child" dyad to the "mother-father-child" triad. Lausanne Trilogue Play (LTP, originally Lausanne Triadic Play) was developed by Elisabeth Fivaz and her learn in Lausanne, Switzerland, and used to carry out standardised studies of child-mother-father interaction. The family is placed in a triangle that allows all three partners optimal access to each other. The focus of this thesis was to describe triadic interaction when all members of the triad interact with each other. It is based on a pioneering longitudinal and prospective study. It was begun with interviews when the parents were expecting their first child. The development of triadic interaction was then monitored by repeated, videotaped LTP observations when the child was 3, 9, 18, and 48 months of age. The study is part of an international collaboration to describe the development of triadic interaction in four groups: 20 Swiss German-speaking families, 20 Swiss French-speaking families, 20 American families (Seattle, Washington, USA), and 20 Swedish families. In Sweden, consecutive Swedish-speaking couples were recruited by midwives at a maternity health care clinic in Stockholm. Twelve boys and 8 girls were born. To analyse the children's communicative skills in relation to their behaviour at age 4 years, the preschool teachers were asked to fill in the Preschool Behaviour Questionnaire (PBQ). The author developed the Child-Parents-Interaction Coding System (CPICS) to analyse quantitative and qualitative variables in triadic interaction. The CPICS was used to analyse LTP observations of the Swedish families over time and to compare the Swedish and American groups of families. One child, a girl, exhibited a typical development. At the age of 5 she was referred to a child and adolescent neuropsychiatric department where, at the age of 7 years, she was diagnosed with an autism spectrum disorder. She was excluded from the group analysis and instead presented as a case report. When the children were 3 months of age, parents held back concerning contribiltion (the starting point for a sequence of interactions) and allowed the "child's just being- to launch conversation. This pattern persisted up to 48 months, with the parents giving the child space. Types or child contributions varied over time. When the child was 3 months old, its parents treated all its behaviours as contributions for starting points of conversation, while child contributions at 48 months generally had a communicative character. Coparenting seems to set the structure for early communication by using various nonverbal, vocal, and verbal methods to support the child in turn-taking sequences. A cultural difference in the tempo of play between American and Swedish families was found. Although both groups of families interacted in a synchronized and reciprocal way, the pace of play in triadic interaction was taster in American families. Positive correlations between complex triadic interaction (number of turn-taking sequences) at 3, 9, and 18 months (significant at 9 months) and preschool teachers' assessments of children's social competence at 48 months suggest some predictive power of this variable in the assessment system. The autistic girl and her parents exhibited deviations in early triadic communication - most clearly when she was 9 months old. Findings are discussed regarding their importance concerning early interventions in the family system.

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

Dementia is a chronic illness involving increasing levels of care, often provided by family members, particularly in culturally and linguistically diverse (CALD) communities. Multicultural community link workers are often the primary service providers assisting families to access health and welfare services and as such have extensive experience of, and possess in-depth knowledge about, CALD family care-giving for dementia. While research has been undertaken on dementia in CALD communities, this research has not focused on the experiences and perceptions of these multicultural workers with regards to CALD family care-giving. In response to this gap in the research, this paper presents the results of an empirical investigation of multicultural workers' perspectives with regard to the cultural traditions informing CALD family care-giving, CALD families' understandings of the term 'carer' and family arrangements regarding care. Due to their close relationship and knowledge of families, multicultural workers can offer an important perspective that is invaluable in informing the provision of carer education and support within CALD communities.

Background. Few population studies have investigated the functional disabilities that accompany specific psychiatric diagnoses. This study assesses the nature and strength of current and residual impairments in various functional domains of life.
Methods. Data were derived from the Netherlands Mental Health Survey and Incidence Study (NEMESIS), a prospective study in the Dutch general population aged 18 to 64 (N = 7147). Psychiatric diagnoses were based on the Composite International Diagnostic Interview; functional disability was assessed on the basis of the Short-Form-36 and the number of disability days.
Results. Psychopathology was associated with increased disability in social, emotional and physical domains of life. Disability levels varied by psychiatric diagnosis, with mood disorders showing the poorest levels of functioning, especially for vitality and social functioning; alcohol-related disorders were associated with few disabilities. Co-morbidity strongly aggravated the disability. The effect of contextual factors on disability was limited, although somatic ill health, unemployment and adverse youth history increased the likelihood of functional disability. The findings indicate that psychopathology can also have residual debilitating effects.
Conclusions. Mental health care providers should be aware that the extent and the type of disability may vary with the different types of disorders and among different groups within the population. Since recovery from functional limitations may not be complete or may take more time than the remission of the psychiatric symptomatology, non-psychiatric follow-up care is needed. The high number of lost work days is relevant from an economic perspective. There is a need for illness-specific disability assessment instruments.

Fyll-i-böcker om barnens första tid och dina vänner har blivit allt fantasifullare. De hjälper oss att fästa speciella ögonblick på papper, så att vi inte glömmer bort dem i vardagssurret. Men vad händer när vardagen försvinner? När din mamma eller pappa drabbas av en allvarlig sjukdom förändras hela livet. Många ungdomar, som varit med om det har berättat att de inte kunde prata med någon när de hade det som svårast. De som skriver dagbok får en ventil från familjens oro och ett sätt att bearbeta sina egna tankar. Men det är inte så lätt att komma igång med en dagbok.

Dagboken- för dig som är ung och har en sjuk förälder är en hjälp på vägen. Med frågor och rubriker kommer dagboksskrivandet igång. Ett yngre skolbarn kan läsa och skriva tillsammans med en vuxen, för en tonåring kan det vara en hemlig dagbok. Det finns ingen övre åldersgräns. Gott om plats för egna skriverier när du kommit igång, och för bilder.

Daglig verksamhet är en av de tio insatserna i lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Det är också den insats som flest personer har. Antalet personer med daglig verksamhet har ökat från 20 500 år 2000 till 25 800 år 2006. Kostnader per person i daglig verksamhet sjönk under samma tid med tio procent. Mot denna bakgrund, och på grund av att Socialstyrelsen från enskilda personer, från brukarorganisationer och från yrkesverksamma inom området har fått signaler om brister i kvaliteten, tog Socialstyrelsen initiativ till denna kartläggning av daglig verksamhet enligt LSS.

Bilden som framträder genom kartläggningen är att utbudet av aktiviteter inom den dagliga verksamheten är stort. Trots detta finns det svårigheter för kommunerna att i vissa fall finna verksamheter som passar varje enskild person.

Traditionellt har daglig verksamhet varit organiserad som gruppverksamhet i särskilda lokaler. Utvecklingen har gått mot mer flexibla former, t.ex. utflyttade grupper som finns på olika företag. Av dem som har beslut om daglig verksamhet har i dag cirka 15 procent detta i form av en individuell placering på en ordinarie arbetsplats. Variationen är dock stor mellan olika kommuner.

Kommuner organiserar sin verksamhet på olika sätt. Vilka nämnder som har ansvaret för daglig verksamhet enligt LSS varierar. Totalt sett har cirka åtta procent av dem som har daglig verksamhet detta i enskild regi. I storstadsregionerna däremot är motsvarande siffra 21 procent. Kartläggningen har inte kunnat visa på några större skillnader mellan kommunal och enskild verksamhet, när det gäller verksamhetens innehåll.

Utmaningen för den dagliga verksamheten ligger i att vidareutveckla både innehållet och formerna för verksamheten samt att öppna vägen till arbetslivet.

Socialstyrelsen kan konstatera att det övergripande målet med daglig verksamhet, att den enskilde på sikt ska kunna få möjlighet till lönearbete, inte uppfylls. Övergångar till ett sådant arbete är näst intill obefintliga. Den dagliga verksamheten riskerar att bidra till en inlåsningseffekt då andra aktörer inom arbetsmarknadspolitikens fält inte ser denna grupp som sin målgrupp. Samverkan mellan daglig verksamhet och andra arbetsmarknadspolitiska aktörer brister. Den måste utvecklas för att målet ska nås.

Traditionellt finns det god kunskap för och erfarenhet av att ge personer med utvecklingsstörning eller med ett stort omvårdnadsbehov en daglig verksamhet med god kvalitet. Det är angeläget att även denna del av verksamheten utvecklas så att inte dessa personers behov kommer i skymundan för de nya behov som ställs på verksamheten.

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

The traditional approach to substance-abuse treatment involves the disease model, as promulgated through Alcoholics Anonymous. In this model, the message for relatives and friends of substance users is that their behavior cannot influence the user to either enter treatment or to reduce their substance use. The main emphasis instead is on helping relatives concentrate on their own lives and cultivating a sense of detachment from the drinker. However, a beginning empirical literature has developed on treatment with the relatives of substance users, which indicates that the relative may be able to affect the behavior of the substance user, although the effect of such treatment on the relative may be less consistent. This article will discuss findings of studies, which are organized according to whether relatives are treated alone or in a marital therapy context. Suggestions for further research in this area and implications for social work are discussed.

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

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

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

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

This dissertation is a qualitative study which is based upon interviews with parents and caretakers of profoundly mentally disabled people.Firstly, the dissertation analyzes the subjects' evaluation of the quality of life of the mentally disabled person. The analysis focuses upon how the intellectual disability affects thinking, emotional life and relationships. The question of the mentally disabled person's well-being is in focus here.Secondly, it is shown how people in close relationships to the mentally disabled person obtain knowledge about the person's inner life through communication with him or her and through interpreting his or her behavior and body expressions.Thirdly, the dissertation investigates how some influential theories on quality of life can contribute to an understanding of profoundly mentally disabled peoples' well-being.The dissertation concludes with a reflection upon the disabled persons' dignity

En orolig själ : en berättelse om att vara manodepressiv
Kay Jamison, professor i psykiatri och en internationell auktoritet på manodepressiv sjukdom, ger här ett märkligt och högst personligt vittnesbörd: En skildring av hur hon själv sedan unga år brottats med manodepressivitet och hur den kampen format hennes liv. Det mörka ämnet till trots, genomsyras boken av en stor portion humor.
Författaren tar oss med in i den lika fascinerande som skrämmande värld som den här typen av vansinne utgör – en värld där den ena polen är det lockande tillstånd där tankar och känslor inte vet några gränser, och den andra en öken av livlös förstening där döden ofta framstår som den enda utvägen.
Kay Jamison drabbades av sin sjukdom när hon var sjutton år, och den följde henne genom skolår och universitetsstudier, genom passionerad kärlek och gränslös sorg, genom maniska skov och ett självmordsförsök som sånär kostat henne livet. Hon beskriver också det plågsamma dilemma som sjukdomen ställde henne inför: att ta litium, en medicinering som innebar att hon gick miste om topparnas hänförelse. Hon hade dessutom lärt sig att en bra flicka reder sig själv, dvs utan medicin. Men – med hjälp av kunskap, livsvilja, adekvat medicinering och, mer än något annat, kraften från ett kärleksfullt förhållande finner hon vägen till ett meningsfullt liv.

Att vara så övergiven, så oskyddad, så utsatt som detta barn som här beskrivs, ter sig för de flesta människor helt obegripligt. Varför såg ingen, varför förstod ingen - hur kunde detta fortgå?

Denna bok är en upprättelse - både för den kvinna som skrivit boken - och för andra som kämpar med känslan att "inte vara som andra" och mot människors oförmåga att förstå.

Professor Christopher Gillberg, som är Gunilla Gerlands läkare påpekar i sitt förord att boken handlar om "den hårfina gränsdragningen mellan friskt och sjukt, normalt och onormalt, icke diagnos - diagnos och om dolda handikapp". Han säger också att "Gunilla Gerlands eget språk öppnar många fler dörrar till förståelse än någon psykiaters fackjargong".

Ett övergripande syfte med avhandling var att belysa den levda erfarenheten av att vara i medelåldern och närstående till en person som insjuknat i stroke för första gången och studera de närståendes erfarenheter av förändringen över tid under det första året efter utskrivning till hemmet, samt att belysa innebörden av medelålders makars levda erfarenhet av relationen till en partner som insjuknat i stroke; under det första året. Avhandlingen omfattar 4 delstudier (I-IV) som sammantaget utgör en longitudinell studie. Tio närstående (40 - 64 år) till personer insjuknade i stroke (förstagångs insjuknande) med förväntat hjälpbehov överstigande 6 månader, inkluderades konsekutivt i studien och följdes under ett år efter utskrivning till hemmet. Narrativa intervjuer utfördes en månad (I, n=10), sex månader (II, n=9) och ett år (III, n=9) efter utskrivning till hemmet. Bland de närstående i delstudie I-III fanns fyra kvinnliga makar (gifta; n=2, sambo; n=2) som utgjorde deltagarna i delstudie IV. För att analysera data användes en fenomenologisk hermeneutisk tolkningsmetod (I, IV) och kvalitativ innehållsanalys (II, III).Avhandlingen visar på att vara i medelåldern och närstående till en person som insjuknat i stroke, efter utskrivningen till hemmet, innebär att gå igenom en förändringsprocess i olika steg. Upplevelsen var att en månad efter utskrivningen kämpa för att inte tappa fotfästet i en otrygg livssituation, där de upplevde ett främlingskap inför situationen, sig själv och personen som insjuknat i stroke. Ändå svarade de närstående oreflekterat an ett krav på ansvar och omsorg (I, IV). Efter sex månader visade de närstående på en kamp för att integrera förändringarna orsakade av stroke till det dagliga livet, förlika sig med förlusterna och att hitta balans och en ny normalitet (II). Makarna förde en kamp för att återfå känslan av samhörighet med sin partner och hitta tillbaka till sin egen identitet som maka, vilket bara var möjligt i frånvaro av en vårdarroll (II, IV). Efter ett år tvingades de närstående att erkänna, lära sig hantera och förlika sig med förändringarna orsakade av strokeinsjuknandet (III). Makarna fick lämna en ?bild? av hur deras partner en gång varit. En trygg relation i samvaro och jämlikhet med en känsla av ?vi? förändrades och blev främmande och ojämlik och ersattes med en känsla av ?jag? och ?du?. För att härda ut måste makarna omvärdera relationen till sin partner och målen i livet. Även om partnern fortfarande var i livet visade makarna en sorg och ett lidande beroende på förlusten av den relation de en gång haft till personen som insjuknat i stroke (IV). Avhandlingen visar även att de närstående inte upplevde sig varit sedda och bekräftade av den professionella vårdpersonalen i sin egen situation som närstående. Vårdens fokus upplevdes hela tiden enbart vara den sjuke och främst de fysiska förändringarna hos personen med stroke. De närståendes upplevelse var av oförståelse för innebörden av de kognitiva och emotionella förändringarna hos den sjuke (I, II, III). De närstående gav så småningom också upp sin strävan att bli bekräftade vilket innebar att bära på ett lidande som inte blev synliggjort (III). En annan del av förändringsprocessen var att de närstående gick ifrån självförnekelse med fokus på den som insjuknat och nuet (I), till en medvetenhet om att ta egna behov i beaktande (II) och att även fokusera på eget välbefinnande för att orka i en framtid (III). Avhandlingen visar att de medelålders närstående går igenom en transitionsprocess, där upplevelser av förluster, förändringar, lidande och sorg finns relaterat till; dåtid, nutid och framtid. De närståendes upplevelse av oförståelse och brist på känsla av bekräftelse i deras livssituation under året efter utskrivningen till hemmet, kan leda till en känsla av ensamhet och övergivenhet både inom de närstående själva, men också i förhållande till andra och världen utanför.

Under sommaren 2009 kom en ändring i socialtjänstlagen angående anhörigstöd. Förändringen gick från att kommuner bör ge stöd till att man ska ge stöd till anhöriga. Lagen innebär att kommunen ska underlätta för den som stödjer en närstående. Till följd av detta så beslutade Kristinehamn och Säffle kommun sig för att utvärdera kommunernas befintliga stöd och dessutom undersöka vilket behov som fanns hos anhöriga. FoU Välfärd Värmland fick uppdraget att konstruera en enkät och därefter genomföra undersökningen i Kristinehamn och Säffle kommun. Föreliggande rapport redovisar resultatet från denna undersökning. Rapporten vänder sig till alla med intresse för arbete med anhörigstöd.

Under sommaren 2009 kom en ändring i socialtjänstlagen angående anhörigstöd.
Förändringen gick från att kommuner bör ge stöd till att man ska ge stöd till
anhöriga. Till följd av detta beslutade sig Kristinehamn och Säffle kommun för att
utvärdera kommunernas befintliga stöd och dessutom undersöka vilket behov som
finns hos anhöriga. FoU Välfärd Värmland fick uppdraget att konstruera en enkät
och därefter genomföra undersökningen i Kristinehamn och Säffle kommun.
För uppbyggnaden av enkäten genomfördes sju stycken djupintervjuer med
anhöriga från båda kommunerna. De analyserades enligt en Grounded theory
ansats. Det framkom tre kategorier av behov och de var information, kunskap samt
egen tid. Det framkom även viktiga faktorer för rollen som anhörig som inte direkt
kan härledas till behov men som inte kunde uteslutas i undersökningen. Andra
betydelsefulla fynd som framkom i intervjuerna var att fokus gärna var på den
närstående och dennes välbefinnande och det var som anhörig svårt att se sina egna
behov. Så trots att undersökningens fokus var på anhörigas behov gick det således
inte att utesluta att rollen som anhörig präglas av den närståendes välbefinnande
och hur dennes situation såg ut. En annan faktor som framkom var att
anhörigsituationen kan ses som en process med olika skeden. Anhöriga visade sig ha
olika behov under olika faser. Det fanns även behov och faktorer som var mer eller
mindre relevanta beroende på vilken funktionsnedsättning den närstående hade.
Utifrån vad analysen av intervjuerna genererade konstruerades därefter enkäten.
Totalt deltog 286 anhöriga i enkätundersökningen i Säffle kommun. Av de som
besvarade enkäten utgjorde män 38,6% och kvinnor 61,4% och medelåldern var 63,7
år. I Kristinehamns kommun deltog 308 anhöriga varav 36,0% var män och 64,0%
var kvinnor. Medelåldern bland dessa anhöriga var 62,6 år.
Resultatet visade att det var samma fem behov som var viktigast för anhöriga i båda
kommunerna. De hade behov av information om; hjälpmedel, trygghetslarm, vilka
insatser som finns tillgängliga till den närstående och vilka krav den närstående kan
ställa samt behov av färdtjänst. Resultatet visade också att de 13 främsta faktorerna
som anhöriga tycker var viktiga var samma i båda kommunerna. Det tyder på att det
är faktorer som anhöriga värderar som viktigt oberoende av hemkommun. Det
anhöriga värderade främst var professionalitet, bemötande och kontinuitet bland
personal som stöder deras närstående. De tyckte också att miljön på boendet var
viktigt samt att boendet var rätt utrustat och anpassat. Information av olika slag var
det som anhöriga var i behov av mest i båda kommunerna. Det var få anhöriga i
Säffle kommun som sa sig inte behöva någon information alls. I praktiken var det
över 95% av alla anhöriga som på något sätt var i behov av information i rollen som
anhörig. I Kristinehamns kommun var denna siffra 83%. Överlag var behovet av
information stort bland anhöriga.
Det fanns både positiva och negativa aspekter med att betrakta anhörigas behov med
avseende på den närståendes funktionsnedsättning. För anhöriga till närstående med
psykiskt funktionshinder samt missbruk/beroendeproblematik var det viktigt att
behoven analyserades utifrån den närståendes funktionsnedsättning. Svårigheten
var att närstående kunde ha fler än en funktionsnedsättning och därmed kunde en
anhörig "tillhöra" fler grupper.
Det är komplext med stöd för anhöriga. Det finns insatser till närstående som
indirekt blir till stöd för den anhörige. Men det är den närstående i slutändan som
ansöker om detta. Vill inte den närstående ta emot hjälp, en insats, så kan det leda
till att den anhöriga får ta konsekvenserna av detta.
Enligt utvärderingen av Säffle kommuns befintliga stöd var det över 80% som var
nöjda eller mycket nöjda med stöd som trygghetsplats, växelvård, dagvård för
personer med minnesproblem samt dagverksamhet. De två sistnämnda stöden hade
dock en mindre andel som var mindre nöjda eller inte alls nöjda än vad växelvården
och trygghetsplats hade. Stödet "avlastning i hemmet" hade flest, 53,3% varit mycket
nöjd med. Å andra sidan så var det 40% som var mindre nöjda eller inte alls nöjda
med samma stöd. I Kristinehamns kommun var det fyra typer av stöd som över 82%
av anhöriga var nöjda eller mycket nöjda med. Dessa var, rangordnat,
trygghetsplats, hemvårdsbidrag, dagvård för personer med minnesproblem samt
avlastning i hemmet.

Doktorsavhandling

Even though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members' perspective. Aim The overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods. Design and Methods This thesis is based upon four papers employing qualitative, quantitative and mixed-method designs. Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies. Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR. Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units. Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses. Results Factors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient's suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit's aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient's altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting's aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were "seeking trust in chaos", "seeking clarity when deciding about living or dying" and finally they were "seeking trust in care as a final act of love". Conclusions: The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs' attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.

Behavioral parent training (BPT) is one of the empirically supported psychosocial treatments for ADHD. Over many years and in many studies, BPT has been documented to improve both child ADHD behavior and maladaptive parenting behavior. In some studies, BPT has also been found to result in benefits in additional domains, such as parenting stress and child classroom behavior. However, the BPT literature on children selected as having ADHD lags behind research conducted on BPT for children selected as having oppositional defiant and conduct disorders (ODD and CD, respectively) with regard to examination of factors that may limit treatment attainment, compliance, and outcomes, such as single parenthood, parental psychopathology, and child comorbidity. Because of the high degree of comorbidity between ADHD and ODD/CD, it is difficult to separate the two BPT literatures. The parameters of BPT (e.g.. format and setting), parent factors, and child factors that may contribute to treatment outcomes for families of children with ADHD are reviewed here and recommendations for future BPT research in the area of ADHD are made.

Young children who have experienced early adversity are at risk for developing disorganized attachments. The efficacy of Attachment and Biobehavioral Catch-up (ABC), an intervention targeting nurturing care among parents identified as being at risk for neglecting their young children, was evaluated through a randomized clinical trial. Attachment quality was assessed in the Strange Situation for 120 children between 11.7 and 31.9 months of age (M = 19.1, SD = 5.5). Children in the ABC intervention showed significantly lower rates of disorganized attachment (32%) and higher rates of secure attachment (52%) relative to the control intervention (57% and 33%, respectively). These results support the efficacy of the ABC intervention in enhancing attachment quality among parents at high risk for maltreatment.

Young children who have experienced early adversity are at risk for developing disorganized attachments. The efficacy of Attachment and Biobehavioral Catch-up (ABC), an intervention targeting nurturing care among parents identified as being at risk for neglecting their young children, was evaluated through a randomized clinical trial. Attachment quality was assessed in the Strange Situation for 120 children between 11.7 and 31.9 months of age (M = 19.1, SD = 5.5). Children in the ABC intervention showed significantly lower rates of disorganized attachment (32%) and higher rates of secure attachment (52%) relative to the control intervention (57% and 33%, respectively). These results support the efficacy of the ABC intervention in enhancing attachment quality among parents at high risk for maltreatment.

Even though multisensory environments (MSE) incorporate artifacts and technology to provide sensory stimuli, most of these artifacts are non-interactive. Twenty-four children with profound developmental disabilities from three MSE institutions have been involved in a research study. A handful of interactive design artifacts, which have been developed as a tool for ideation and to enhance the use of MSE by promoting children's engagement are presented. With these artifacts the children have shown us a vast topology of interaction and bodily engagement, showing a potential for haptic and audio interactive design fields to contribute to a more participatory MSE practice.

Hur är det att ha ett syskon med funktionshinder? Ja, man lär sig ta ansvar tidigt och blir ofta mycket duktig. Men samtidigt är det många barn som känner sig ensamma. Det kan vara tungt att orka med en jobbig vardag med bråk och oväsen där man jämt måste ta hänsyn. Det kan vara svårt att förklara för vänner och skolkamrater varför ens syskon beter sig annorlunda. Därför undviker man kanske att ta hem kamrater och känner sig ännu mer ensam och utsatt.

Den här boken bygger på barns och ungdomars egna berättelser. Det är starka berättelser där många syskon med liknande erfarenheter kan känna igen sig. Alla vuxna – lärare, psykologer, läkare och andra som möter dessa barn har stor nytta av att lyssna på dessa modiga barn och ungdomar som vågar och vill berätta.

INTRODUCTION: Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop
effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite.
METHODS: This Dutch study is a qualitative interview study. The aim was twofold:
1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach.
RESULTS: The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a
growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an
uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and
exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others.
DISCUSSION AND CONCLUSION: Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum o facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.

Despite an almost universal policy of community care, placing a relative in a care home will be an increasingly common event as population ageing continues. Studies suggest that most families wish to remain involved in care following placement but that they often experience difficulties in establishing relationships with staff. This paper reports on the fifth phase of a Swedish study exploring the experience of placement from a temporal perspective and including the views of all the key actors (relatives, staff in the community, staff in care homes). The focus here is placed on the perceptions of care home staff and their perceived role in relation to spouses who have recently placed a partner. The study adopted a grounded theory approach and data were collected from in-depth interviews with 16 staff members of varying grades and positions. Analysis of the data suggested 3 levels of awareness amongst staff: empathic awareness, guarded awareness and limited awareness. The characteristics of empathic awareness are outlined and its implications briefly considered.

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

Illustrates how standard epidemiologic principles form the knowledge base to justify a preventive intervention for an at-risk population. These principles were applied to a sample of 92 from the population of children aged 8 to 15 at alleged risk for mental health disorders because a parent died. Prior work on this alleged risk population is sparse and flawed. Validly determining the population effect of an alleged risk factor requires assessing the influence of sampling bias. The bias found, underrepresentation of deaths of a mother, did not influence the relations among death of a parent and children's depression and conduct disorder, and the modifiable mediators of risk to be changed by the preventive intervention. The epidemiologic measure of effect indicated that death of a parent is a risk factor for major depression but not for conduct disorder among youth. Families recruited for the preventive intervention by epidemiologic methods (ES families) did not differ significantly from the earlier families on whom the knowledge base was formed. Families referred to the intervention by self or others significantly differed from the ES families in two ways that constituted serious biases. The implications of these biases for prevention were discussed.

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

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