Bibliotek

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

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

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

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

This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.

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

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

Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design: A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion: This study will provide evidence about the effectiveness and cost-effectiveness of an internet intervention for caregivers. If both can be shown, this might set the stage for the development of a range of internet interventions in the field of caregiving for people with dementia. This is even more important because future generations of caregivers will be more familiar with the use of internet.

Background

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

Objective

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

Methods

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

Results

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

Conclusions

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

Keywords

Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation

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

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

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

Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.

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

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

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

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

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

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

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

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

The global burden of stroke is immense. Despite the high incidence of stroke, little research has been done on the post stroke recovery process. Aim; the overall aim of this research project was to explore life after stroke based on experiences of stroke survivors (I, II), their family care givers (I-III) and expert in field of rehabilitation (IV) in an Iranian context. Material and Method: Data for the studies were gathered from knowledgeable participants and followed to figure out the themes by purposeful selection (I- IV) and then by theoretical sampling (II-IV). Data were analyzed by the basic tenets of the grounded theory approach according to Strauss & Corbin, by semi-structured interviews and focus group discussions (II-III-IV) and qualitative content analysis (I). Results: In Study (I) the results were categorized into the two main themes that were identified as; (1) challenged by changes in life situations and (2) striving to cope with new conditions. Study (II) identified "functional disturbances" as core concept. Functional disturbances were encompassed by in appropriate strategies in managing and supporting, such as lack of adequate social insurance and access to the few existing rehabilitation services. In study (III) the core concept identified was "lack of continuity of rehabilitation care". Seven related main categories were extracted including inadequate knowledge and skills, inappropr iate acce ss ib il it y to re hab il ita t ive se r vice s, inadeq uat e soc ia l ins ura nc es, mod ifying ho me environment, managing coexisting medical conditions, improving nurses' roles and, relying on family unity. In study (IV) "non-integrated rehabilitation service" emerged as core concept. The explored concepts were 'deficiently allocated budget', 'inadequate social insurance', 'lack of availability of rehabilitative care', 'negative public opinions', 'lack of consistency of care', 'split services and professional separation'. Potential areas for improvements were 'need for changing policymakers' attitudes', 'needs for refining rehabilitation in health care system', 'needs for establishing a registration system', 'needs for providing information and skills' and 'needs for seeing the family as a whole'. In conclusion, the core concept for life after stroke was "functional disturbances". Non-integrated rehabilitation services within health care system and lack of continuity of rehabilitation care caused stroke survivors and their family caregivers to experience ranges of dysfunctions in terms of physical, emotional, psychological and social aspects. Change of policy makers' attitude appears to be important in order to allocate adequate budget in this regards. Stroke survivors and their family caregivers experienced everyday life in terms of being challenged by changes in life situation and striving to cope with new conditions. The study results indicate that focusing on multidisciplinary approach and establishing registration system for follow-up of survivor's rehabilitation are to be recommended.

OBJECTIVE:
To use a multi-method approach to examine the association of parental ADHD and gender with observed and self-reported parenting beliefs and behaviors.

METHOD:
Seventy-nine mother-father dyads completed measures of child behavior and impairment, parenting beliefs and behaviors, and self- and partner ratings of ADHD symptoms and functional impairment. Forty-five parents also completed structured parent-child interactions.

RESULTS:
A hierarchical linear model suggests impairment in functional domains may be associated with negative emotions about parenting and less effective parenting strategies. For fathers, greater severity of partner-reported symptoms of ADHD may be associated with greater frequency of negative talk during parent-child interactions.

CONCLUSION:
Findings suggest that higher levels of parental ADHD symptoms and functional impairment may be associated with reported beliefs and behaviors related to parenting. Differences emerged among mothers' and fathers' use of parenting strategies when self- and other-report of ADHD symptoms and impairment were assessed.

OBJECTIVE:
To understand parents' perspectives about the strategies they use to promote social participation of their school-age children with acquired brain injuries (ABI) in home, school, and community life.
METHOD:
A descriptive research design employing a semistructured interview format was used. Interviews were conducted in the homes of 16 families of school-age children with ABI discharged up to 7 years earlier from one inpatient rehabilitation program. Data were examined using content and constant-comparison analyses.
RESULTS:
Parents needed time to allow the recovery process to unfold for themselves and their children and developed strategies that fit into or assisted with managing family routines. Over time parents developed insight into the activity demands and their child's potential success to participate in desired activities. Based on these insights, parents used "anticipatory planning," which involved previewing upcoming events and activities and using strategies to promote positive and prevent negative experiences for their children. Specific strategies that parents used to promote social participation were classified into three categories: Creating opportunities, teaching skills, and regulating cognitive and behavioral function.
CONCLUSIONS:
Understanding how families use and integrate strategies within the context of their daily lives and what factors influence strategy use may provide practitioners with insights needed to support families in promoting their children's social participation.

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

The process of language acquisition requires an individual to organize the world through a system of symbols and referents. For children with severe intellectual disabilities and language delays, the ability to link a symbol to its referent may be a difficult task. In addition to the intervention strategy, issues such as the visual complexity and iconicity of a symbol arise when deciding what to select as a medium to teach language. This study explored the ability of four pre-school age children with developmental and language delays to acquire the meanings of Blissymbols and lexigrams using an observational experiential language intervention. In production, all four of the participants demonstrated symbol-referent relationships, while in comprehension, three of the four participants demonstrated at least emerging symbol-referent relationships. Although the number of symbols learned across participants varied, there were no differences between the learning of arbitrary and comparatively iconic symbols. The participants' comprehension skills appeared to influence their performance.

OBJECTIVE:
Exposure to war trauma has been independently associated with posttraumatic stress (PTSD) and other emotional disorders in children and adults. The aim of this study was to establish the relationship between ongoing war traumatic experiences, PTSD and anxiety symptoms in children, accounting for their parents' equivalent mental health responses.

METHODS:
The study was conducted in the Gaza Strip, in areas under ongoing shelling and other acts of military violence. The sample included 100 families, with 200 parents and 197 children aged 9-18 years. Parents and children completed measures of experience of traumatic events (Gaza Traumatic Checklist), PTSD (Children's Revised Impact of Events Scale, PTSD Checklist for parents), and anxiety (Revised Children's Manifest Anxiety Scale, and Taylor Manifest Anxiety Scale for parents).

RESULTS:
Both children and parents reported a high number of experienced traumatic events, and high rates of PTSD and anxiety scores above previously established cut-offs. Among children, trauma exposure was significantly associated with total and subscales PTSD scores, and with anxiety scores. In contrast, trauma exposure was significantly associated with PTSD intrusion symptoms in parents. Both war trauma and parents' emotional responses were significantly associated with children's PTSD and anxiety symptoms.

CONCLUSIONS:
Exposure to war trauma impacts on both parents' and children's mental health, whose emotional responses are inter-related. Both universal and targeted interventions should preferably involve families. These could be provided by non-governmental organizations in the first instance.

Purpose: To investigate the effect of cueing on communicative responses of children with multiple disabilities in an educational setting. It was hypothesized that differences would exist in teacher interactional styles and the use of orienting cues would increase the communicative responses of the participants. Method: A naturalistic observation research method was employed in order to examine the interaction of three student - teacher dyads in three special schools. Three different activity types were videotaped from which interactions were coded and analysed. Results: Multi-modal cueing facilitated communicative responses of children with Rett syndrome. However, increased communication opportunities provided by caregivers did not elicit increased responses from the girls. Conclusion: There is a difference in cueing by teachers in their interactions with children with multiple disabilities. Also, more frequent communicative interactions did not necessarily lead to increased student responses. It is suggested that amount and type of cueing may need to be considered to be effective in generating student responses. The small number of participants, however, means findings should be viewed cautiously and that more research is indicated. © 2004 Taylor & Francis Ltd.

Self-determination theory (Deci & Ryan, 1985) posits that (a) people are inherently motivated to internalize the regulation of uninteresting though important activities; (b) there are two different processes through which such internalization can occur, resulting in qualitatively different styles of self-regulation; and (c) the social context influences which internalization process and regulatory style occur. The two types of internalization are introjection, which entails taking in a value or regulatory process but not accepting it as one's own, and integration, through which the regulation is assimilated with one's core sense of self. Introjection results in internally controlling regulation, whereas integration results in self-determination. An experiment supported our hypothesis that three facilitating contextual factors—namely, providing a meaningful rationale, acknowledging the behaver's feelings, and conveying choice—promote internalization, as evidenced by the subsequent self-regulation of behavior. This experiment also supported our expectation that when the social context supports self-determination, integration tends to occur, whereas when the context does not support self-determination, introjection tends to occur.

Borderline Personality Disorder (BPD) has long been considered a mental health problem that results in considerable costs in terms of human suffering and psychiatric expenses among adult patients. Although the diagnosis of BPD for adolescents is frequently used in clinical settings, the field of mental health has questioned whether one should diagnose BPD among adolescents. This paper reviews the recent empirical literature (identified through PsycINFO 1980 to present) to evaluate prevalence, reliability, and validity of a BPD diagnosis in adolescents. It is concluded that the features BPD diagnoses in adolescents are comparable to those in adults. Furthermore, there appears to be a legitimate subgroup of adolescents for whom the diagnosis remains stable over time as well as a less severe subgroup that moves in and out of the diagnosis. While caution is warranted, formal assessment of BPD in adolescents may yield more accurate and effective treatment for adolescents experiencing BPD symptomatology. More longitudinal research is necessary to further explicate the issues of diagnosing BPD in adolescents.

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

Factors were examined that are associated with
life satisfaction one year post-discharge for persons with a
spinal cord (SCI) or traumatic brain injury (TBI). Findings
show persons with SCI or TBI should be considered as two
distinct groups with regard to factors affecting life satisfaction
. Different strategies might be considered to affect either
group. Three psychosocial variables significantly increased
life satisfaction for persons with SCI: closeness to family, the
level of family activities, and blaming oneself for the injury.
For persons with TBI, total family satisfaction, blaming
oneself for the injury, being employed, being married, and
having memory and bowel independence significantly increased
life satisfaction . For persons with TBI, there was a
difference in the number of factors affecting life satisfaction
dependent on whether the persons blamed themselves or not.
Those who do not blame themselves show a greater number
of functional activities as indicators for their self-satisfaction.

Purpose. To identify factors contributing to reduced quality of life and increased caregiver strain in an older population referred to a community rehabilitation team and to recommend service delivery models. Methods. Analytical cross-sectional study arising from baseline assessments from 107 subjects drawn from a randomised controlled trial of community rehabilitation service delivery models. Setting. A community rehabilitation team based in Brisbane, Queensland, Australia. Measures. Primary outcome variables include quality of life (EQ-5D & VAS) and Carer Strain Index. Predictor variables include participation in functional activities, history of falls, number of medications, number of co-morbidities, depression, environmental hazards, physical function and nutrition. Association between variables assessed using linear regression. Results. Major factors contributing to reduced quality of life were having reduced participation in daily activities, depression, and having poor vision. Having poor nutrition and no longer driving also contributed to poor quality of life. The major factor contributing to increased caregiver strain was reduced participation in daily activities by the older person. Conclusions. Community rehabilitation services working with older populations must adopt models of care that screen for and address a wide range of factors that contribute to poor quality of life and caregiver strain.

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

Abstract
OBJECTIVE:
To evaluate the social and emotional adjustment of 219 children in families with varying levels of intimate partner violence (IPV) using a model of risk and protection. To explore factors that differentiate children with poor adjustment from those with resilience.
METHODOLOGY:
Mothers who experienced IPV in the past year and their children ages 6-12 were interviewed. Standardized measures assessed family violence, parenting, family functioning, maternal mental health, and children's adjustment and beliefs.
RESULTS:
Using cluster analysis, all cases with valid data on the Child Behavior Checklist, Child Depression Inventory, General Self-Worth and Social Self-Competence measures were described by four profiles of children's adjustment: Severe Adjustment Problems (24%); children who were Struggling (45%); those with Depression Only (11%); and Resilient (20%) with high competence and low adjustment problems. Multinomial logistic regression analyses showed children in the Severe Problems cluster witnessed more family violence and had mothers higher in depression and trauma symptoms than other children. Resilient and Struggling children had mothers with better parenting, more family strengths and no past violent partner. Parents of children with Severe Problems were lacking these attributes. The Depressed profile children witnessed less violence but had greater fears and worries about mother's safety.
CONCLUSION:
Factors related to the child, to the mother and to the family distinguish different profiles of adjustment for children exposed to IPV who are living in the community. Resilient children have less violence exposure, fewer fears and worries, and mothers with better mental health and parenting skills, suggesting avenues for intervention with this population.
PRACTICE IMPLICATIONS:
Findings suggest that child adjustment is largely influenced by parent functioning. Thus, services should be targeted at both the child and the parent. Clinical interventions shaped to the unique needs of the child might also be tested with this population.

gallart a., cruz f. & zabalegui a. (2013) Factors influencing burden among non-professional immigrant caregivers: a casecontrol study. Journal of Advanced Nursing69(3), 642654. doi: 10.1111/j.1365-2648.2012.06049.x Abstract Aim. To identify factors related to the burden that is experienced by untrained immigrant caregivers. Background. There is growing concern about how to provide the care required by an ageing population. Although elder care has usually been provided by family members, this role is increasingly being fulfilled by immigrant caregivers with no formal training. Design. Casecontrol study (burdened/non-burdened according to the Zarit Burden Interview). Methods. The study took place between May 2005October 2009. Anonymous questionnaires were distributed to 110 immigrant caregivers and their corresponding older care recipients (n=110), who were receiving care in their homes in Barcelona (Spain). The questionnaires included measures of burden, social support, quality of life and social integration, and items about the physical/psychological status of the care recipient and the nature of the care tasks. Two groups of immigrant caregivers were defined according to their scores on the Zarit Burden Interview: burdened (n=55) and non-burdened (n=55). Results. Burdened caregivers reported less social support, a poorer quality of life, and problems with social integration. Furthermore, 48% said that they lacked knowledge about the care task, while 44% had difficulty performing certain care tasks, which constitutes a risk situation. Conclusion. Burden among untrained immigrant caregivers may be reduced by improving their social support systems and quality of life, thereby helping to ensure the availability of the caregiver services, which society increasingly needs.

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

This book displays new data on up to 56 countries of the UN-European region (comprising North America, Europe including Russia, Central Asia and Israel).

Despite growing concerns over ageing and its social and fiscal impact, surprisingly scarce information is available on basic indicators concerning long-term care for dependent older people. The present publication seeks to fill this gap of knowledge as it searches for answers to queries and puzzles such as?

What exactly do we mean by long-term care? Where to set the boundaries between family or informal and formal care, between home and residential / institutional care, between public and privately financed care?

Will demographic ageing further accelerate? How much gain in life ahead at retirement age and during the decades of third age are actually observed and to be expected in the future? To what an extent will longer lives correspond to healthier ones? Are there limits in shifting the oldest-old threshold - and correspondingly increased dependency risks - upwards?

What are the typical living arrangements of older people? How do they differ across countries, or between women and men? What are the social implications of living alone, in couples, with children or others? How much mobility is there in later life? And how much of it is preferred, expected, or involuntary?

Who provides care for dependent older people within the family? Is care-giving always a women?s world? How do adult children and dependent parents feel about care arrangements? Who shares which burdens? Can work and family duties be balanced? What are people?s preferences?

What are the differences between cash for care and attendance allowances or care leaves? How do the roles of residential care change? Is care provided mostly in institutions or at home? Where is formal care most widely available? Why are there so many more women than men in residential care?

Which countries spend the most in long-term care? Most people are cared for at home? is that where most money is spent? What are the public / private mixes in long-term care spending? What does a closer look at country differences in expenditure levels, spending patterns and forms of generosity disclose? What trade-offs are there between different forms of generosity ? and which ones are fiscally or socially sustainable?

Are cash benefits one effective way to keep expenditure under control? What if....all countries would spend up to the EU-15 level? Demographics alone are the main driving force behind expenditure in long-term care? or not? How much can it cost to be cared for in an institution?

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

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

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

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

The academic underachievement of looked after children is well known. By involving foster
carers in a Paired Reading intervention a Swedish project tried to address this issue,
replicating a successful British trial. The aim of my thesis was to study the variations in the
foster carers' experiences of this literacy intervention. Reading reports from 100 children
were collected and qualitative interviews with 15 foster parents were analyzed using concepts
from motivational psychology. The results revealed that although some had reported
difficulties a majority of the participants had implemented the program in an acceptable way.
Many carers had noticed improvements in the child's reading ability and some reported
improved relations, but in a few cases rigidly following the method had led to conflicts. The
interviews showed that the completion of the literacy training was conditioned on the
children's pleasure/joy in reading which in turn may require adjustments in the day-to-day
delivery of the intervention. Also carers had to see a purpose with Paired Reading in order to
be able to arouse enthusiasm in the child. The results suggest that it is possible to engage
foster parents in the improvement of foster children's literacy skills.

Det inte längre självklart vad en familj är för något. "Kärnfamiljen" förändras och det skapas nya sätt att "göra familj". Därmed uppstår nya frågor om familjen: Hur ser dagens familjer egentligen ut?

Läs mer
Den här boken tar ett grepp om det moderna familjelivet och behandlar olika typer av familjekonstellationer - vilka visar familjens inplacering i en ny politisk, social och emotionell tid. Boken ger en inträngande bild av familjeliv i Sverige, men presenterar också utblickar mot mer globala bilder av familjeliv.

Om författarna
Thomas Johansson är professor i socialpsykologi på Institutionen för kultur, estetik och medier vid Göteborgs universitet.

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation. A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV). The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional's approach. The result also identified a low level of agreement between the participants' experience and what they considered to be significant in the professional's approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV). Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation.A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV).The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional's approach. The result also identified a low level of agreement between the participants' experience and what they considered to be significant in the professional's approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV).Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area.

Syftet med boken är att ge föräldrar till barn med funktionshinder redskap att aktivt samarbeta med habiliteringsverksamheten. Boken består av korta textavsnitt som kan tjäna som kunskapskälla och inspiration, samt skattningsformulär som föräldrar kan använda sig av som redskap för att tydliggöra för sig själva och för habiliteringen vad man vill ha hjälp med.

Vad finns det för stöd till familjen när ett barn eller en ung person drabbas av psykisk
ohälsa? Vad säger forskningen om att engagera hela familjen i behandlingen?
Kunskapsöversikten tar upp frågor som dessa och visar hur familjer med barn och unga
med psykisk ohälsa kan ha det i Sverige idag. Författaren har gått igenom ett stort antal
vetenskapliga artiklar och genomgången visar att det finns starkt vetenskapligt stöd för
att hela familjen ska engageras i behandlingen, t ex i form av familjeterapi, familjefokuserad omvårdnad eller familjestödsprogram. Kunskapsöversikten visar också att familjerna ibland har behov av stöd och avlastning, framför allt om barnet eller ungdomen har allvarliga beteendestörningar.

Många svenska barn far illa idag. Den ojämförligt största gruppen är barn till alkoholmissbrukare. Ändå är både barnen och deras föräldrar i många avseende glömda. I boken beskrivs både barnens och föräldrarnas livssituation. Föräldraskapet är en stark kraft, som måste tillvaratas för att stödja dessa utsatta familjer. Både barn och föräldrar behöver bli sedda. För att det skall bli möjligt krävs bättre kunskapet och mer samarbete mellan mödra- och barnhälsovård, barnomsorg, skola, socialtjänst och missbruksvård. I bokens andra del finns konkreta förslag på hur man kan arbeta för att stödja både barn och föräldrar i familjer med missbruk, men även i andra utsatta familjer. Boken vänder sig både till studerande och yrkesverksamma. Tredje reviderade upplagan.

The aim of this dissertation was to gain knowledge about the experiences of siblings and parents of children with autism and learning difficulties, about what brought about the decision to apply for a place in a group home for their child and what it meant for the parents that their child had moved. A further aim was to gain knowledge about what it is like to work in a group home for children with autism as well as to investigate the work atmosphere in group homes for adults with autism. The dissertation includes four studies: the first comprises interviews with parents (n = 10) before their children have moved as well as when their children have lived for two years in the group home, the second comprises interviews with siblings (n = 14), the third comprises interviews with staff (n = 10) who have worked with the five children in a newly opened group home after one year and after four years, the fourth comprises a study with a questionnaire focusing on the views of staff (n = 152) on the work atmosphere in 58 group homes for adults with autism. The results from the interviews show that the parents had experienced grief over not having a child that was healthy and could develop normally. Before applying for a place in a group home they had been in a situation of great stress and were overloaded. Their children had very extreme deviant behaviour that they were not always able to control. This led to the families becoming increasingly isolated, the siblings being affected and several parents feeling that they were completely worn out. The results of the interviews carried out two years after their child had moved to a group home revealed that this gave the whole family feelings of release and relief. The parents also experienced an ethical dilemma consisting on the one hand of an ethical duty to care for their own child and on the other hand a feeling of relief when passing over responsibility to others. The results from the interviews with the siblings before the children moved, show that these siblings took responsibility in a precocious way. The siblings were often exposed to frightening and deviant behaviour.This led to several siblings feeling anxious and insecure at home. Having a brother or sister with autism led to relationships with friends being affected negatively. The siblings chose not to bring friends home because of the child's occasionally violent and destructive behaviour. When the staff had worked for one year in the group home it was seen that they were greatly involved in the children and their families. They had developed a very supportive work atmosphere among the staff but experienced stress that was triggered by violence. Focus group interviews with staff after four years of work revealed that four of the ten staff had left the job. Those who were still there, both the original and newly appointed staff desired more support and in-house training, particularly in coping with the then teenage children's violent behaviour. The staff who participated in the study of the work atmosphere in group homes for adults with autism described the atmosphere as being generally more creative and innovative than stagnating. There were two different types of group homes, those providing living accommodation only and those combining accommodation with daytime activities, the former were rated as having a better work atmosphere than the latter, which showed higher degree of conflict and lower degrees of motivation and challenge.

OBJECTIVE:
The housing preferences of persons with severe mental illness living in three types of community residences were examined, as were their perceptions of problems in these settings and the relationships between clients' and family members' housing preferences and perceptions of problems.
METHODS:
A closed-ended questionnaire was developed to gather demographic and diagnostic data and information about housing preferences and seven categories of service-related problems. It was completed by clients who lived in group settings with 24-hour on-site staff, in supported housing with on-site visits by staff, and in homes or apartments with no on-site professional services. Questionnaires were returned by 129 family members and 180 clients.
RESULTS:
Clients who lived in group settings were significantly more likely to be older, less educated, unemployed, and diagnosed as having schizophrenia than clients in other settings. Although a larger proportion of family members than clients preferred housing with more support, for both families and clients a statistically significant association was found between current and preferred residence. A strong and significant correlation was found between clients' and family members' perceptions of problems, which included stress on the family and clients' social isolation and relapse to illness. For clients who lived independently, a significantly greater proportion of both clients and families reported that social isolation was a problem.
CONCLUSIONS:
Although supported housing works well for some individuals, a continued need exists for an array of housing with varying levels of structure. The results suggest that clients and families identify the same problems as priorities.

With the Singaporean population ageing at an exponential rate, home carers are increasingly becoming essential partners in fall prevention and care delivery for older persons living at home and in the community. Singapore, like other Asian countries, regards the family as the main support structure for the older person, and national policies have been implemented to support this cultural expectation. Family carers experience similar concerns as older persons with regard to fall risk, and identifying and addressing these concerns can potentially lower fall risk and improve fall prevention for older persons. It is timely to remind ourselves – as concern about falls in older persons begins to shift to carers – to incorporate the influence of Asian cultural values and unique family dynamics of outsourcing family caregiving, in the management of older persons' fall risk in the community.

Avhandling för doktorsexamen

Sweden has the world's lowest infant mortality rates. Despite this, according to Statistics Sweden, 816 children under the age of one died in 1997, 33 of these as a result of sudden infant death syndrome (cot death). This means an annual number of family catastrophes which is close to the number of people who died when the Estonia sank. This thesis, "Fallen Leaves: On Coping with the Loss of Small Children", studies how parents come to terms with the disaster that the death of a child involves, how they cope with destruction and repair the trauma.

Older people receiving informal care at home appear at high falls risk. This study investigates frequency, circumstances and factors associated with falls risk for older care recipients, and their informal caregivers. Ninety-six dyads, recruited from caregiver agencies, underwent a home assessment, including falls risk, function, depression, quality of life, self-rated health and carer burden. Care recipients were at high falls risk. In the past 12 months, 58% had fallen and 26% twice or more. Common falls risk factors were polypharmacy, multiple medical conditions and requiring functional assistance. Caregivers exhibited multiple health problems, moderate burden and reduced quality of life. Where care recipients had high falls risk, caregivers had significantly higher carer burden and depression. Low functional level and high care recipient health problems were independently associated with risk of falling (P < 0.05). Strategies to reduce falls risk in this cohort are necessary, together with supporting the needs of the caregiver.

Parental, peer, and older siblings' contributions to adolescents' substance use were investigated with 2 waves of panel data from 225 African American families. Structural equation modeling showed that older siblings' behavioral willingness (BW) to use substances at Time 1 (T1) predicted target adolescents' Time 2 (T2) use, controlling for other T1 variables. Regression analyses revealed an interaction between targets' and siblings' BW, such that targets were more likely to use at T2 if both they and their siblings reported BW at T1. This interaction was stronger for families living in high-risk neighborhoods. Finally, siblings' willingness buffered the impact of peer use on targets' later use: Low sibling BW was associated with less evidence of peer influence.

BACKGROUND: The familial nature of early-onset major depressive disorder (MDD) has been documented in numerous family studies of adults and is supported by studies of offspring of parents with MDD, for whom the risk is more than 3-fold. None of the published high-risk studies have gone beyond 2 generations, and few have a longitudinal design. We report results of an approximately 20-year follow-up of families at high and low risk for depression. The first 2 generations were interviewed 4 times during this period. The offspring from the second generation are now adults and have children of their own, the third generation of the original cohort. OBJECTIVE: To examine the familial aggregation of psychiatric disorders and functioning in grandchildren by their parents' and grandparents' depression status. DESIGN: Longitudinal, retrospective cohort, family study. PARTICIPANTS: One hundred sixty-one grandchildren and their parents and grandparents. MAIN OUTCOME MEASURES: Lifetime rate of psychiatric disorder and functioning in grandchildren, stratified by parental and by grandparental depression status, collected by clinicians blind to diagnoses of previous generations and to previous interviews. RESULTS: There were high rates of psychiatric disorders, particularly anxiety disorders, in the grandchildren with 2 generations of major depression, with 59.2% of these grandchildren (mean age, 12 years) already having a psychiatric disorder. The effect of parental depression on grandchildren's outcomes differed significantly with grandparental depression status. Among families with a depressed grandparent, increased risk of anxiety (relative risk, 5.17; 95% confidence interval, 1.4-18.7; P = .01) and increased risk of any disorder (relative risk, 5.52; 95% confidence interval, 2.0-15.4; P = .002) were observed in grandchildren with a depressed parent as compared with those with nondepressed parents. The severity of parental depression, as measured by impairment, significantly increased the rate of a mood disorder in these grandchildren (relative risk, 2.44; 95% confidence interval, 1.1-5.5; P = .03). In contrast, among grandchildren with nonfamilial depression, ie, depressed parents with no depressed grandparents, there was no significant effect of parental MDD on grandchildren diagnoses. However, parental MDD, regardless of whether families had a depressed grandparent, had a significant impact on the grandchildren's overall functioning. Potential confounding variables did not affect the strength of the association with parental and grandparental depression. CONCLUSIONS: The association between parental MDD and child diagnosis is moderated by grandparental MDD status. The rates of psychopathology are highest in grandchildren of parents and grandparents with a moderately to severely impairing depression. Anxiety disorders are the early sign of psychopathology in the young grandchildren. Early interventions in the offspring of 2 generations affected with moderately to severely impairing MDD seem warranted. This familial group may be the target for neuroimaging, genetic, and other biological studies.

This review integrates and critically evaluates what is known about family characteristics associated with childhood Attention-Deficit/Hyperactivity Disorder (ADHD). Evidence suggests that the presence of ADHD in children is associated to varying degrees with disturbances in family and marital functioning, disrupted parent-child relationships, specific patterns of parental cognitions about child behavior and reduced parenting self-efficacy, and increased levels of parenting stress and parental psychopathology, particularly when ADHD is comorbid with conduct problems. However, the review reveals that little is known about the developmental mechanisms that underlie these associations, or the pathways through which child and family characteristics transact to exert their influences over time. In addition, the influence of factors such as gender, culture, and ADHD subtype on the association between ADHD and family factors remains largely unknown. We conclude with recommendations regarding the necessity for research that will inform a developmental psychopathology perspective of ADHD.

Doktorsavhandling

Children with autism spectrum disorder (ASD) have shown high variability in learning outcomes in response to evidence-based interventions, suggesting a need for individualization of intervention programmes for each child and his/her family. To explain this variability and develop effective intervention strategies research suggested focusing on identification of important contextual factors that might influence the effectiveness of a specific intervention for each child such as family cultural characteristics and characteristics of service settings and systems. The overarching aim of the thesis was to identify and describe proximal and distal environmental factors and processes affecting implementation and provision of interventions and services for young children with ASD and their families within the context of the Swedish support system. Two theoretical models guided the research project: Bronfenbrenner's bioecological model of human development and Wachs's multiple-influences model of individual variability. The specific objectives addressed using a mixture of qualitative and quantitative methods were: (i) to investigate the scope of reporting ethnicity and other cultural factors in research publications by Swedish scholars involved in empirical research in ASD in children and youth (Study 1); (ii) to explore perceptions of autism, beliefs about its causes, and treatment preferences expressed by parents of children with ASD from culturally, ethnically and linguistically diverse backgrounds (Study 2), and (iii) to explore grandparents' perceived needs in relation to having a young grandchild with ASD (Study 3). The results of data triangulation across the three studies showed that within the context of the Swedish support system, three proximal environmental factors were associated with identification of ASD in young children and families' use of services and interventions before and after the child was diagnosed with ASD. These were parents' belief systems (including perceptions about child's autism, help-seeking behaviours, and treatment preferences); the role of preschool teachers, and the role of other service providers, such as healthcare professionals. Data triangulation singled out seven groups of distal environmental factors: beliefs of extended family; family cultural, ethnic and linguistic background; family socio-economic characteristics (occupation and education level); Swedish formal support system enacted through various legislative acts; international laws and regulations; information sources (mass media and social media), and conceptualization and clinical definition of ASD (as reflected in DSM and ICD classifications). Findings also highlight the importance of taking into consideration of role of ASD researchers as an additional distal environmental factor affecting implementation of interventions and services for culturally and linguistically diverse children with ASD and their families.The results of the studies provide insights into understanding of families' belief systems about ASD causes, treatment preferences, and needs that are essential for planning and provision of family-level early interventions for children with ASD in the cultural context of Sweden. Implications for practice and future research are discussed.

PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).

MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.

ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.

ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.

The present study was conducted to examine whether a sexual rehabilitation intervention program, which was developed during the present study and designed for stroke patients and their spouses, was effective in terms of sexual knowledge and satisfaction and frequency of sexual activity at 1 month after intervention. The study subjects were conveniently selected from stroke patients admitted to the neurology department at a university hospital located in Incheon, South Korea. A total of 46 subjects (12 couples for the experimental group and 11 couples for the control group) were included. Sexual knowledge, sexual satisfaction, frequency of sexual activity, level of cognitive function, and performance with respect to daily living activities were measured. The results obtained demonstrated that the devised sexual rehabilitation intervention program significantly increased sexual satisfaction and frequency of sexual activity, but that it did not promote sexual knowledge. The present study has meaning because the intervention program could be used as a practical guideline for post-stroke sexual rehabilitation. In addition, the findings of this study provide evidence regarding the usefulness of sexual education and counseling on the sexual health of post-stroke patients and their spouses.

The effectiveness of methods to prevent stroke recurrence and of education focusing on learners' needs has not been fully explored. The aims of this study were to assess the effects of such interventions among stroke patients and their primary caregivers and to evaluate the feasibility of a web-based stroke education program. The participants were 36 patients with a clinical diagnosis of ischemic stroke within 12 months post-stroke and their primary caregivers. The participants were randomly assigned to either an experimental or a control group. The primary measures included blood chemistry, self-reported health behaviors, sense of control, and health motivation for stroke patients, and caregiver mastery for caregivers. To test the feasibility of the intervention program, the rates of participation and occurrence of technical problems were calculated. The experimental group tended to improve significantly more than the control group in terms of exercise, diet, sense of control and health motivation for the stroke patients and in terms of caregiver mastery for the primary caregivers. The rate of participation in the web-based program was 63.1%. This program, which focuses on recurrence prevention in stroke patients and caregivers, has the potential to improve health behaviors for stroke patients.

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.

Abstract
RATIONALE:
The investigation of putative effects of early life stress (ELS) in humans on later behavior and neurobiology is a fast developing field. While epidemiological and neurobiological studies paint a somber picture of negative outcomes, relatively little attention has been devoted to integrating the breadth of findings concerning possible cognitive and emotional deficits associated with ELS. Emerging findings from longitudinal studies examining developmental trajectories of the brain in healthy samples may provide a new framework to understand mechanisms underlying ELS sequelae.
OBJECTIVE:
The goal of this review was twofold. The first was to summarize findings from longitudinal data on normative brain development. The second was to utilize this framework of normative brain development to interpret changes in developmental trajectories associated with deficits in cognitive and affective function following ELS.
RESULTS:
Five principles of normative brain development were identified and used to discuss behavioral and neural sequelae of ELS. Early adversity was found to be associated with deficits in a range of cognitive (cognitive performance, memory, and executive functioning) and affective (reward processing, processing of social and affective stimuli, and emotion regulation) functions.
CONCLUSION:
Three general conclusions emerge: (1) higher-order, complex cognitive and affective functions associated with brain regions undergoing protracted postnatal development are particularly vulnerable to the deleterious effects of ELS; (2) the amygdala is particularly sensitive to early ELS; and (3) several deficits, particularly those in the affective domain, appear to persist years after ELS has ceased and may increase risk for later psychopathology.

The present study aimed to examine the levels and interactions of family burden (FB) and expressed emotion (EE) in first episode psychosis (FEP) patients and, secondly, to observe the potential change after a brief psychoeducational group intervention implemented in a real world clinical setting. Twenty-three key relatives of FEP patients received a brief psychoeducational group intervention. FB and EE were assessed before and after the intervention. EE-change and correlations between variables were examined. Half of the sample of key-relatives showed high levels of EE. No severe family burden was observed. FB and EE did not change after the intervention. Family subjective and objective burden were correlated with emotional overinvolvement, but not with criticism. Brief psychoeducational groups may not be sufficient to reduce FB and EE associated to the experience of caregiving for a family member with a first-episode psychotic disorder. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

A number of alternative therapies have recently been employed with people who have intellectual disabilities (IDs). The present study examines the effects of four frequently used therapies on the communication of people with profound ID. Communication was assessed using five measures of positive communication and five measures of negative communication. The therapies assessed were Snoezelen, active therapy, relaxation and aromatherapy/hand massage. There were eight participants in the present study and each received all four of the therapeutic procedures in a counterbalanced design. Treatment procedures were videotaped at sessions 5, 10, 15 and 20, and later scored for defined measures of communication. Both Snoezelen and relaxation increased the level of positive communication and had some effect on decreasing negative communication. However, active therapy and aromatherapy/hand massage had little or no effect on communication. The lack of a no-treatment control is noted, especially in the light of trends seen at baseline. Considering the lack of generalization of therapeutic effects, the present results should be treated with caution.

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

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

Worldwide, at least 25% of persons and their families are affected by mental illness resulting in significant stress and burden; yet little is known about how the illness affects quality of family life. In this paper, we report a secondary analysis of a grounded theory study that identified the process by which 17 families managed mental illness over time. Families were characterized as Hanging On, Being Stable, or Doing Well based on their responses to caring for relatives with mental illness. Most of the families perceived themselves as Being Stable or Doing Well and four families perceived themselves as Hanging On. In this paper, these descriptors of family quality of life, interpreted within the context of family development and illness trajectories, are presented as a focus of professional support and intervention.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The definition of the word disability has been debated for the UN Convention on the Rights of Persons with Disabilities, and the final draft will soon be submitted to the UN General Assembly for approval.1 WHO has been mandated to produce a world report on disability and rehabilitation by 2009 to collate the best evidence about the prevalence, distribution, and trends of disability and recommend action.2

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

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

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

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

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

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

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

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

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

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

The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.

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

OBJECTIVES:
A randomized trial to compare two levels of an intervention (full versus brief) for use by primary health-care professionals with family members affected by the problematic drug or alcohol use of a close relative.
DESIGN:
A prospective cluster randomized comparative trial of the two interventions.
SETTING:
A total of 136 primary care practices in two study areas within the West Midlands and the South West regions of England.
PARTICIPANTS:
A total of 143 family members affected by the alcohol or drug problem of a relative were recruited into the study by primary health-care professionals. All recruited family members were seen on at least one occasion by the professional delivering the intervention and 129 (90 %) were followed-up at 12 weeks.
MAIN OUTCOME MEASURES:
Two validated and standardized self-completion questionnaires measuring physical and psychological symptoms of stress (Symptom Rating Test) and behavioural coping (Coping Questionnaire) experienced by the family members. It was predicted that the full intervention would show increased reduction in both symptoms and coping when compared to the brief intervention.
RESULTS:
The primary analysis adjusted for clustering, baseline symptoms and stratifying variables (location and professional group) showed that there were no significant differences between the two trial arms. The symptom score at follow-up was 0.23 [95% confidence interval (CI): -3.65, +4.06] higher in the full intervention arm than in the brief intervention arm, and the coping score at follow-up was 0.12 (95% CI: -5.12, +5.36) higher in the full intervention arm than in the brief intervention arm.
CONCLUSIONS:
A well-constructed self-help manual delivered by a primary care professional may be as effective for family members as several face-to-face sessions with the professional.

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

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

The psychometric properties of the Timeline Followback Spousal Violence interview (TLFB-SV), a calendar method used to assess daily patterns and frequency of spousal violence, were evaluated. Men (N = 104) entering a spousal violence treatment program, along with their female partners, were interviewed with the TLFB-SV at pretreatment, posttreatment, and quarterly thereafter for 1 year and asked to identify days of male-to-female and female-to-male physical aggression that had occurred between them. For posttreatment and follow-up interviews, participants maintained a weekly diary, in which they catalogued the days on which acts of spousal violence occurred. The subscale scores derived from the TLFB-SV, the proportion of days of any violence, and proportion of days of severe violence for each partner were calculated for each assessment interval. The TLFB-SV subscales had excellent temporal stability and concurrent and discriminant validity. Interpartner agreement on TLFB-SV subscale scores and agreement between partners on days when spousal violence occurred was low at pretreatment, but was high for the other assessment periods.

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

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

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

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

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

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

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

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

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

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

Uppföljningen visar också följande:

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

BACKGROUND:
Children with cerebral palsy often show significant communication impairment due to limited or absent speech. Further, motor impairment can restrict the use of movement, including pointing, to signal interest and intent. For some children, controlled gaze can be an effective 'point-substitute': such 'eye-pointing' can be used to request items, establish mutual interest in an event, or select vocabulary within an alternative or augmentative communication (ACC) system. However, in clinical practice there is a lack of clarity about how the term 'eye-pointing' is used, how 'eye-pointing' is recognized or how it relates to social development.
AIMS:
To present a clinical description of the term 'eye-pointing' with reference to children with severe cerebral palsy who cannot speak or finger-point. To consider this description within a wider discussion of the importance of gaze in communication development.
METHODS & PROCEDURES:
Cumulative clinical observations during assessment of children referred to a specialist multidisciplinary communication clinic have provoked discussion between the authors on what factors precipitate use of the term 'eye-pointing' in young children with severe cerebral palsy. In particular, discussion has centred on whether use of the term is appropriate in individual cases and whether guidance is available about how gaze should be observed in this developmentally vulnerable group of children. A literature search was also conducted in order to explore whether the use and meaning of the term is established.
CONCLUSIONS & IMPLICATIONS:
In interactions with non-speaking children, determining whether a child is using eye-gaze communicatively requires observation and interpretation of several factors. These processes will be informed by reflection on what is known about other aspects of the child's communication and interaction skills. Within the literature, the term 'eye-pointing' is sometimes used when describing the communication functions of individuals using augmentative and alternative communication (AAC) systems, and is occasionally qualified by a definition. No papers have been found that set out a clinical description universally applicable to children with severe motor impairment. Moreover, guidance is lacking on how possible episodes of 'eye-pointing' might be confidently distinguished from other episodes of directed gaze in young, developing communicators. The discussion of the term makes reference to the importance of gaze in early communication development, and explores factors that might influence gaze and its interpretation in young children with cerebral palsy. A description of eye-pointing for this group is offered. The authors suggest that this will bring practical benefits to those supporting the communication development of children with severe cerebral palsy.

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.

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

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

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

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

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

Abstract
OBJECTIVE:
The first of the three objectives of this study was to identify the core barriers that impede adult mental health and other clinicians from working with patients about parenting and child-related issues. The second and third objectives were to rate the importance of these barriers and to compare barriers for adult mental health workers with other workers.
METHOD:
There were two data collection phases; the first, qualitative phase involved collecting verbatim responses from 60 mental health and welfare workers, regarding barriers about working with mentally ill patients about their parenting role as well as with their children. The second involved 32 participants, including 20 adult mental health workers and 12 other workers, responding to the scaled questionnaire items based on the qualitative barriers identified at phase one.
RESULTS:
The most important barriers highlighted by workers were patients not identifying their illness as a problem for their children and patients denying that they had a mental health problem. All workers reported that it was part of their role to get involved with issues regarding their patient's children. In comparison to other workers, adult mental health workers reported time and resource limitations, as well as skill and knowledge deficits regarding parenting and working with children.
CONCLUSIONS:
The findings are discussed in relation to adult mental health policy and ongoing professional development, particularly for adult mental health workers.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Läsålder
6-9 år
Illustratör/Fotograf Jon Birch

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

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

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

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

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

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

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

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

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

Design A single, blind, randomised controlled trial.

Setting Stroke rehabilitation unit.

Subjects 300 stroke patients and their care givers.

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

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

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

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

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

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

Objective: To study characteristics of attention-deficit/hyperactivity disorder (ADHD) in a representative group of clinically impaired young children in Sweden with the disorder. Method: One hundred thirty-one children with ADHD (aged 3–7 years) were examined, and their parents were interviewed. Independent parent questionnaire data (Child Behavior Checklist, ADHD Rating Scale-IV, Conners) were collected. For comparison 131 children without ADHD were matched for age, gender, parents' marital status, child's adoption status, and social class. Results: Children with ADHD had extremely high ADHD symptom levels—on average four to eight times higher than the comparison group. Sociodemographic correlates of ADHD symptoms were more pronounced in parent questionnaire data than in parent interview data, underscoring the importance of diagnostic interview when dealing with clinical issues. Very few of the children with ADHD (6%) appeared "normal" with regard to attention/activity level at clinical examination.Conclusions: Clinic children with a diagnosis of DSMIV ADHD have typical and impairing symptoms already before starting school. The variance of ADHD in this age group appears to be accounted for by primary psychosocial factors only to a limited degree. It would seem reasonable to establish supportive and treatment measures for these young children so that the psychosocial and academic problems shown by so many individuals with ADHD later in their development might be reduced.

Herr Muffin är ett marsvin som nu är gammal, trött och har ont i magen. Han tänker tillbaka på sitt liv och hur bra han har haft det. Han har haft fru och sex lurviga ungar, fått mycket gurka och hö. En dag ligger ett brev i hans postlåda och i brevet står det "Jag är ledsen för att pappa säger att när ett marsvin är gammal kan det plötsligt dö...." Boken om Herr Muffin berättar om ålderdom och död på ett fint och stillsamt sätt. En bilderbok som passar barn från 3 år.

Background: In recent years, an increasing interest in personality disorders in childhood and adolescence has been observed. This is partly due to recent findings of temperament, personality and neurobiological research. Method: This article reviews the history of the concept of borderline conditions in children and adolescents, and presents recent evidence from developmental psychology and neurobiology to support the diagnosis in adolescents as a disorder of development. An overview of treatment based on the decades-long experience with these patients at the Tiefenbrunn Clinic in Germany is described. Results: While the term personality disorder implies enduring traits, the evidence suggests that it is relatively unstable in adults as well as adolescents. Concerns about labeling adolescents with a presumably lifelong condition have hampered research on pathogenesis and treatment. Nevertheless, some adolescents with severe impairments in functioning do meet adult criteria for BPD, and do respond to the tailored treatment approaches that have been developed for them. Conclusions: The psychopathology of adolescents with BPD is probably a result of the interaction of the adolescent developmental process and defects in attachment and mentalization similar to those in adults with BPD. The term "developmental borderline personality disorder" is suggested to reflect the fluidity of this condition. Appropriate intervention requires a comprehensive multimodal approach in which individual therapy takes place within a protective framework of boundaries and limits.

Increased expectations of positive effects of alcohol have been associated with severity of drinking across a variety of abusing and nonabusing adult populations. Although alcohol expectancies have been examined among high school adolescents, no study has examined expectancies of identified adolescent abusers in treatment. This study investigated whether adolescent alcohol abusers in treatment expect significantly more reinforcement from alcohol than do nonabusing peers and whether expectancies vary as a function of exposure to parental alcohol abuse. The adolescent version of the Alcohol Expectancy Questionnaire (Christiansen, Goldman, & Inn, 1982) was completed by 116 abusing and nonabusing adolescents. Results indicate that adolescent alcohol abusers expect significantly more reinforcement from alcohol than do demographically comparable nonabusing peers. Adolescents with an alcohol-abusing parent reported expecting more cognitive and motor enhancement from drinking than did adolescents without a family history of abuse. Thus, both personal alcohol use and parental alcohol use are related to adolescent alcohol expectancies. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Drug use and abuse carries risk in people of all ages. However, adolescents are particularly vulnerable to substance misuse. Adolescent drug use continues to be an area of concern with a number of adolescents developing problems associated with the use of various drugs. Negative sequelae associated with adolescent drug use include areas such as schooling, health, and family relationships. Difficulties with the legal system, schooling, or within the family are commonly the triggers for recognition of substance misuse problems in a young person. However, problems are usually well-established before they are recognized. The challenge of dealing with these problems will fall on families, particularly parents. This is a crisis for families, and ongoing support is needed if they are to overcome the challenges. Health workers (including nurses) are well-positioned to support families who are dealing with adolescent drug problems. In this paper we propose the adoption of a strengths approach as a strategy for developing resilience in families.

Adolescent mothers are prone to live in poor conditions, lack adequate financial resources, suffer high stress, encounter family instability, and have limited educational opportunities. These factors contribute to inadequate parent-child interactions and diminished infant development. Social support can promote successful adaptation for adolescent mothers and their children. This review article describes the support needs and challenges faced by adolescent parents and their children, the support resources available to and accessed by adolescent parents, and existing support-education intervention studies, to provide directions for future research. Relevant research published between January 1982 and February 2003 was obtained from online database indices and retrieved article bibliographies. Frequently encountered problems included small sample sizes and attrition, lack of suitable comparison groups, and measurement inconsistencies. When planning support-education interventions, content, duration, intensity, mode, level, intervention agents, and targets should be considered. Future research can address these challenges.

Examined family structural variables (family income, parental education, and maternal marital status) and process variables (maternal monitoring, mother–adolescent general communication, mother–adolescent sexual communication, and maternal attitudes about adolescent sexual behavior) as predictors of indices of adolescent sexual behavior and risk due to sexual behavior in 907 Black and Hispanic families from Montgomery, Alabama; New York City; and San Juan, Puerto Rico. Mean ages of mother and daughter for the total sample were 40.27 yrs and 15.30 yrs, respectively. The findings indicate that family-structure variables failed to predict adolescent sexual behavior. In contrast, each of 3 family process variables predicted multiple indices of adolescent sexual behavior and risk due to sexual behavior. Neither adolescent gender nor ethnicity qualified the findings. Differences did emerge among the 3 locations and by reporter (adolescent or mother) of the family process variables.

Starting from an outline of the refugee experience as a process of cumulative traumatisation, we review research literature on mental health outcomes in refugees. Next, an integration of findings on relational processes in refugee families documents the role of the family unit as a key interactive context patterning the impact of sequential traumatisation. Relating these trauma- and migration-specific family processes to their central dimension of provision or disruption of emotional availability in a context of chronic adversity, we aim to explore the development of unresolved and insecure parental states of mind regarding attachment during forced migration. Starting the research report, a method discussion on the administration of 11 Adult Attachment Interviews with adult refugees as part of an explorative multiple case study integrates deontological and technical reflections on the use of the Adult Attachment Interview in a context of ongoing traumatisation. The paper then presents findings on adult attachment in refugees and highlights representational processes involved in the potential disruption of caregiver availability during refugee traumatisation.

Folkhälsorapport 2009 är den sjunde nationella rapporten och redovisar hälsans utveckling i olika befolkningsgrupper och hur den påverkats av levnadsvanor och omgivningsfaktorer. Under de senaste decennierna har hälsan förbättrats vilket avspeglar sig i att medellivslängden fortsätter att öka och ökar mer bland män än bland kvinnor. Det har också funnits en ogynnsam utveckling av folkhälsan, olika symtom på nedsatt psykiskt välbefinnande ökade kraftigt under 1990-talet utom bland de äldsta. Under 2000-talet tycks dock denna utveckling ha brutits utom bland ungdomar. De senaste uppgifterna som finns om hur befolkningen upplever sitt hälsotillstånd är från 2005 och speglar ett samhälle under högkonjunktur. Hälsotillståndet kan mycket väl ha försämrats sedan dess med tanke på den ekonomiska kris som gjort sig gällande under sista halvåret.

Medellivslängden ökar mest bland män och högutbildade
Den främsta orsaken till den ökande medellivslängden är att allt färre insjuknar i hjärt- och kärlsjukdomar och bland dem som insjuknar har dödligheten minskat kraftigt. Risken att dö i hjärtinfarkt har nära nog halverats de senaste 20 åren och risken att dö i stroke har minskat med en tredjedel. Minskad rökning samt lägre blodfetter och blodtryck gör att färre insjuknar. Bättre behandlingsmetoder har bidragit till att risken att dö i hjärtinfarkt eller stroke minskat dramatiskt för både kvinnor och män. Cancerdödligheten visar inte samma positiva utveckling: lungcancer minskar bland män men ökar alltjämt bland kvinnor och minskningen av bröstcancerdödligheten är förhållandevis liten. Skillnader i förväntad medellivslängd mellan personer med olika lång utbildning har ökat under hela 1990-talet, och fortsätter att öka under 2000- talet framför allt bland kvinnor. Det är framför allt sociala skillnader i cancerdödlighet som ökar bland kvinnor.

Förändrade levnadsvanor
Bland barn ökade övervikten kraftigt från 1980-talet till 2000-talet men nu tycks ökningen plana ut. Idag är 15-20 procent av alla barn överviktiga och 3-5 procent är feta. Barns matvanor har förbättrats, fler äter frukt och grönsaker medan konsumtionen av läsk och godis har sjunkit markant under senare år. Bland ungdomar i årskurs 9 minskar andelen rökare liksom alkoholkonsumtionen och användningen av narkotika. Ökningen av andelen vuxna med övervikt och fetma var störst på 1990-talet och ser nu ut att avstanna. I åldrarna 16-84 år är hälften av männen och nästan 40 procent av kvinnorna överviktiga eller feta. Fetma förkortar i genomsnitt livet med 6-7 år. De allra senaste åren förefaller energiintaget via maten minska för första gången på decennier. Alkoholkonsumtionen har ökat sedan början av 1990-talet och högst alkoholkonsumtion har män i åldern 20-24 år. Den alkoholrelaterade dödligheten minskar bland män i åldern 25-64 år och ökar i åldrarna över pensionsåldern. Bland kvinnor ökar alkoholdödligheten i åldrarna 65-74 år medan den varit i stort sett oförändrad i åldern 45-64 år. Narkotikadödligheten minskade på 2000-talet efter att ha ökat dramatiskt under decennier.

Hälsoutvecklingen bland ungdomar oroande
Flera olika indikatorer pekar på att psykisk ohälsa är särskilt vanligt bland yngre kvinnor men att den ökar bland båda könen. Andelen självmordsförsök ökar kraftigt bland unga kvinnor, och allt fler unga vårdas på sjukhus för depression eller ångest och för alkoholförgiftning. Under sista åren har dödligheten bland unga män ökat något till följd av en liten ökning i flera dödsorsaker, nämligen skador, alkoholrelaterade dödsorsaker och möjligen även självmord.

Hälsan är ojämnt fördelad
Hjärt- och kärlsjukdomar och diabetes är vanlig are bland lågutbildade.
Rökning minskar i alla grupper utom bland kvinnor med enbart grundskoleutbildning.
Överlevnad i bröstcancer är lägre bland kvinnor med lägre utbildning.
Svår värk och dåligt allmänt hälsotillstånd är betydligt vanligare hos arbetare än hos tjänstemän.
Ensamstående kvinnor med barn har mer besvär av värk, oftare nedsatt psykiskt välbefinnande, röker mer och överviktiga är vanligare.
Astma och födoämnesallergier är vanligare bland barn till föräldrar i lägre socialgrupper. De får dessutom allvarligare symtom av sin astma än barn i högre socialgrupper.
Tandhälsan är betydligt sämre hos socioekonomiskt svaga grupper. Många anser sig inte ha råd med den tandvård de behöver.
Ensamstående kvinnor är en våldsutsatt grupp och 15 procent av alla ensamstående kvinnor med små barn har utsatts för våld i hemmet.
Risken för våld är större bland kvinnor med fysiska och psykiska funktionshinder samt äldre med få sociala kontakter.
Våld och skador drabbar oftare barn i familjer med låga inkomster.
Det är vanligare bland lågutbildade att äldre vårdas av sina anhöriga. De som har högre utbildning köper i större utsträckning dessa tjänster.
Vissa grupper avstår oftare än andra från att hämta ut sina läkemedel: ensamstående med barn, arbetslösa, personer med sjuk- och aktivitetsersättning, personer med ekonomiskt bistånd och de som har höga avgifter för läkemedel. Ensamstående kvinnor med barn avstår i tre gånger så hög utsträckning som befolkningen i sin helhet.

Barns erfarenheter av separationer och placeringar utanför hemmet får vanligen så stor plats att de skymmer ålders­ och köns­ skillnader, vilket uppmärksammas i denna artikel. Som en del av ett större forsknings­ projekt granskas skillnader mellan 10-11­ åriga pojkars och flickors problem.

Från psykiskt sjuk till psykiskt funktionshindrad belyser de förändrin gar som ägt rum inom den svenska psykiatrin sedan början av 1990-talet , med speciell tyngdpunkt på psykiatrireformen 1994 och dess konsekven ser. Denna reform har bland annat lett till att den kommunala socialtj änsten fått ett allt större ansvar för omsorgen om personer med långva riga och svåra psykiska funktionshinder. Teman som lyfts fram är försk jutningen från begreppet ?psykisk sjukdom? till ?psykiskt funktionshin der?, vår kunskap kring psykiska funktionshinder och hur drabbade pers oner hanterar dessa i sin vardag. Vidare diskuteras de nya roller som anhöriga och frivilligorganisationer fått efter avvecklingen av de gam la mentalsjukhusen; de krav på delaktighet och inflytande över det egn a livet som psykiskt funktionshindrade ställer, något som också föränd rar villkoren för dem som arbetar med dessa frågor. Boken vänder sig s peciellt till personer som utbildar sig inom vård och omsorg

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

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

apporten utgör en kartläggning av Södertäljes utbud av föräldrastöd och av det arbete som görs i kommunen för att tidigt upptäcka barn med normbrytande beteende. Resultatet visar att det finns flera områden som kommunen både kan och behöver arbeta vidare med.

Flertalet vetenskapliga studier har visat att det finns ett samband mellan barns och ungdomars upplevelser i familjen och utvecklingen av en kriminell livsstil. Föräldrastödjande verksamhet har blivit ett samlingsnamn för de åtgärder och projekt där föräldrar är delaktiga i arbetet med att förhindra sociala problem hos sina barn.

Den här skriften handlar om hur man genom samarbete kan komma fram till
vardagsfunktionella lösningar för personer med kommunikationshandikapp. Utgångspunkten
är den modell för familjemedverkan och gemensam problemlösning som utvecklats av Mats
Granlund och Eva Björck-Åkesson, här speciellt tillämpad på AKK-området. Modellen för
gemensam problemlösning har utformats och använts vid åtgärder för vuxna och barn i behov
av särskilt stöd (Granlund, 1988; Björck-Åkesson & Granlund, 2000). Den har utvärderats vid
forskningsstiftelsen ALA, Stockholm och inom forskningsprogrammet CHILD (ChildrenHealth-Intervention-Learning-Development)
vid Mälardalens Högskola. Likaså har den
använts som grund för en interventionsmodell i ett projekt kring kommunikation (KomP) på
Bräcke Östergård, Göteborg, 1995-1998, (Zachrisson, 1998). Ytterligare erfarenhet av
gemensam problemlösning kring alternativ och kompletterande kommunikation har tillförts
genom projektet "Kommunikation genom teknik – ur ett vardagsperspektiv", ett projekt i
samarbete mellan kommunikations- och dataresurscentren DART i Göteborg och DaKo i
Halmstad 1999-2001, finansierat av KFB (Vinnova).
Skriften riktar sig främst till arbetsterapeuter, logopeder, pedagoger och andra som i sitt yrke
kommer i kontakt med personer som använder eller har behov av alternativ och
kompletterande kommunikation, AKK. Syftet är att beskriva en modell för samverkan där
brukaren, de som han/hon samspelar med och experter/professionella kan mötas. Alla kan
bidra med sina olika kunskaper och erfarenheter i arbetet med att utveckla bra lösningar för
brukaren som ger henne/honom möjligheter att kommunicera i vardagen på ett
tillfredställande sätt.
En ofta förekommande fråga vid gemensam problemlösning är varför begreppet "problem"
används. Anledningen till att vi valt att använda detta begrepp är att det är generellt och kan
inbegripa olika former och nivåer av svårigheter. Det går emellertid bra att använda begrepp
som svårigheter eller frågeställningar. I praktiken pratar man ofta om svårigheter. Naturligtvis
är det viktigt att i första hand se till personens resurser och till resurser i omgivningen och
använda dessa i åtgärdsarbetet.
Gerd Zachrisson, arbetsterapeut vid kommunikations- och dataresurscentret DART i
Göteborg har tagit initiativ till skriften och har sammanställt den tillsammans med Eva
Björck-Åkesson, professor i pedagogik vid Mälardalens Högskola och Bitte Rydeman,
logoped vid dataresurscentret DaKo i Halmstad och doktorand vid Institutionen för Lingvistik
vid Göteborgs Universitet.

The author of this study investigated the variety of functions used by a bilingual infant to provide further evidence for the communicative-functional approach to child language acquisition, compared the development of pragmatic functions in a monolingual and a bilingual child, and devised a categorization system that can be applied to child language acquisition data by other researchers in the field. Accordingly, data collected from a Persian-English bilingual child during a period of 10 months, as part of a longitudinal study, were analyzed, and a taxonomy of pragmatic functions the participant used was established. Analysis of the data indicated that despite certain differences in the frequency and distribution of pragmatic functions the participant employed in the present study (bilingual) and those used by Halliday's monolingual child, the two studies demonstrated that both children developed pragmatic functions from a very early age. The theoretical implication of this study is that the development of pragmatic functions is a natural tendency in young children, whether monolingual or bilingual. The practical outcome of the study is a proposed categorization system that is intended to facilitate the analysis of child language acquisition data from a communicative-functional perspective.

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers "masculine authenticity", all of them appear to cherish "his helping hands" as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional 'male activities' and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

Kvinnors position som informella vårdare har ofta tagits för givet i forskning om och socialpolitisk styrning av informell vård inom familjen i västeuropa, medan relativt få diskussioner har förts om mäns delaktighet och ansvar för densamma. Män som helt oförutsett hamnar i en situation i livet där de måste bestämma sig för om man ska ta sig an ett påtagligt vårdansvar går på många sätt bortom alla de förutsättningar som män vardagsvis har att hantera i livet. Genom att undersöka vårdande mäns insatser i sina familjer kan man lära sig en del av vad som faktiskt sker när män tar på sig ett långvarigt vårdansvar. I denna studie har vi intervjuat åtta döttrar som växt upp och/eller levt nära en pappa som under lång tid vårdat sin partner i det egna hemmet. Resultatet visar att när män har ett långvarigt vårdansvar så kommer det också något gott ur de kunskaper de fått av vårdandet i relation till de egna barnen. Alla döttrar som vi intervjuat prisar sina fäders insatser och -hans hjälpande händer- därför att det hade gett dem en närmare och mer "genuin" relation. Resultatet visar också att vårdansvaret för männen inneburit att de bryter mot rådande konventioner om vad manlighet är och på olika sätt fått hantera och betala för det priset i det offentliga livet. Ett långvarigt och påtagligt vårdansvar innebär således en transformering av sociala relationer, privat och offentligt samt att presentera ett alternativt sätt att vara man på. Avslutningsvis föreslås en mer genusbaserad förståelse och ett mer strategiskt arbets- och förhållningsätt bland professionella, i socialt och välfärdsarbete, i mötet med döttrar och andra familjemedlemmar som stödjer sina vårdande fäder.

One challenge faced by mothers living with HIV (MLWHs) is the decision about whether or not to disclose their HIV status to their young children, and how best to carry out the disclosure. Disclosure of their serostatus has emerged as one of the main concerns MLWHs have, and that decision can result in high levels of psychological distress. Concerns are exacerbated among MLWHs with younger children, due to the fact that they face additional worries, such as whether the child is old enough to understand, or will be able to keep the information confidential. A great deal of recent research—within approximately the past decade—has been conducted to investigate maternal disclosure of HIV, and the outcomes on children. This paper reviews the current state of the research literature, focusing on factors that appear to influence whether or not mothers chose to disclose; characteristics of children who have been made aware of their mothers' serostatus relative to children who remain unaware; factors that appear to influence children's reactions to maternal disclosure; and implications of this research as well as future research directions.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The principal aim of this investigation was to help develop 'Interdisciplinary Studies of Childhood Ethics' as a new field of inquiry. We identified: (i) current intra-disciplinary and interdisciplinary knowledge gaps in childhood ethics; and (ii) priorities for future research and development. A prominent problem, highlighted within and across disciplines, relates to how the best interests standard should be reconciled with the recognition of children as agents. This project makes an innovative contribution by promoting the development of interdisciplinary childhood ethics knowledge and standards, informing future improvements in childhood research and services.

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

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

The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].

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

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

Background  This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.

Methods  The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.

Results  The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.

Conclusions  The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.

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

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

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

Background  Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.

Methods  A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).

Results  The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.

Conclusions  Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.

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

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

Akademisk avhandling

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

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

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

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

AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.

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

How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.

The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.

INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.

This study presents an analysis of mediation of the effects of the Family Bereavement Program (FBP) to improve mental health outcomes of girls at 11 months following program participation. The FBP was designed based on a theory that program-induced change in multiple child and family level mediators would lead to reductions in children's mental health problems. Mediational models were tested using a three wave and a two wave longitudinal design. Using a three wave longitudinal design, FBP effects on three variables at T2 (increased positive parenting, decreased negative events, and decreased inhibition of emotional expression) were found to mediate the effects of the FBP on mental health problems at 11-month follow-up. Using a two-wave longitudinal design, support was found for FBP effects on three additional variables at 11-month follow-up (increased positive coping, decreased negative thoughts about stressors, and decreased unknown control beliefs) to mediate program effects to reduce mental health problems at 11-month follow-up. The discussion focuses on theoretical explanations for the mediational effects and on implications for identifying "core components" of the FBP that are responsible for its effects to reduce mental health problems of girls.

Moniqa Andersson är bara 58 år då hon får diagnosen Alzheimers sjukdom. I boken Min syster fick Alzheimer - om vård och bemötande ur ett anhörigperspektiv beskriver hennes syster, bokens författare, hur hon går bredvid genom sjukdomsförloppet och kämpar för att Moniqa ska få en trygg och fungerande vård på ett demensboende. Min syster fick Alzheimer är inte bara en engagerad och personlig skildring av hur en demenssjukdom utvecklas och hur de närstående drabbas, den ger också en värdefull inblick i hur vårdsystemet fungerar. Iréne Andersson reflekterar träffsäkert över bemötandet inom den kommunala demensvården och psykiatrin samt ger ett antal konkreta råd om vad som skulle kunna förbättras. Hon problematiserar vidare begreppen "anhörig" och "anhörigsjukdom" samt tar upp frågor om identitet, etik och ansvar. Här kommer många anhöriga och närstående att känna igen sig och få stöd. Författarens iakttagelser gör också boken särskilt intressant för personal i kommun och landsting. Iréne Andersson arbetar som lektor vid Malmö högskola med utbildningsvetenskap samt forskar om genus och fredshistoria. Hon är även flitigt anlitad av Alzheimerföreningen som föreläsare.

When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.

Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009).

År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig.

I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.

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

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

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

There have been impressive, recent advances in the development of efficacious treatments for child and adolescent behavior problems. However, specific methods for delivering these treatments in a way that amplifies their efficacy have not been well articulated. Although many factors may be involved, attendance and adherence to treatment are arguably the most basic necessities for effective treatment delivery. We provide a conceptual and empirical review of past research on attendance and adherence to child and adolescent therapy, with a special focus on the importance of parents/guardians in managing treatment participation. Our review demonstrates that attendance and adherence are associated with a range of significant methodological, clinical, and financial outcomes. Several pretreatment predictors of attendance and adherence have been identified; however, to date only 12 controlled, clinical trials have evaluated strategies for enhancing attendance and adherence to child therapy. We conclude with an agenda for advancing research on the prediction and enhancement of attendance and adherence to child therapy as a means of improving the efficiency and effectiveness of child treatments.

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

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

Doktorsavhandling

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

Kliniska riktlinjer för personlighetsstörningar som nu presenteras är
nummer 9 i en serie av riktlinjer som framtagits i Svenska Psykiatriska
Föreningens regi sedan 1996. Tidigare har riktlinjer publicerats
med titlarna Schizofreni och schizofreniliknande tillstånd, Förstämningssjukdomar,
Ångestsyndrom, Alkoholproblem, Självmordsnära
patienter, Tvångsvård, Äldrepsykiatri och Ätstörningar. Dessa riktlinjer
kan beställas från Förlagshuset Gothia (www.gothia.verbum.se,
sök "psykiatri").
Människor med personlighetsstörningar har länge betraktats som
en svår patientgrupp då interaktionen med omgivningen ofta blir problematisk
och konfliktfylld. Personlighetsstörningar är vanligt förekommande
i den vuxna befolkningen. Prevalensen i vården är hög –
inte minst bland psykiatriska patienter – och samsjuklighet med andra
psykiatriska tillstånd är vanlig. Det finns ett stort behov av kunskap
om personlighetsstörningar, vilket gör att de kliniska riktlinjer
som nu presenteras är mycket angelägna och välkomna. Arbetsgruppen
med Lisa Ekselius i spetsen har på ett mycket förtjänstfullt sätt
åskådliggjort personlighetsstörningarnas kliniska uttryck, komplexitet
och drabbade personers subjektiva lidande. Ett av huvudsyftena
med de nu presenterade riktlinjerna är att göra personlighetsstörningarna
igenkännbara för oss alla som möter patienter med dessa tillstånd
i vår kliniska vardag. Genom att tidigt kunna identifiera personlighetsstörningar
hos patienter, kan man formulera realistiska behandlingsmål
och minska risken för att de hamnar i ofruktsamma
behandlingskontakter. Detta gäller inte minst många patienter som
behandlas för ett axel-I-syndrom. Idag finns en rad diagnostiska
5
hjälpmedel som kan underlätta identifiering av personlighetsstörningar.
Trots att det fortfarande råder brist på empirisk forskning inom
området finns det belägg för att dessa störningar går att behandla
framgångsrikt. Tydlig struktur samt värnande om den terapeutiska alliansen
mellan patient och behandlare är väsentliga för all form av behandling
av patienter med personlighetsstörningar.
Personlighetsstörningsproblematiken leder många gånger till funktionella
svårigheter i livet, känsla av utanförskap och subjektivt lidande.
Inte minst gäller det patienter med borderline personlighetsstörning,
där även risken för självskadebeteende och suicid är hög. Det är
hoppfullt att behandlingsmetoder som dialektisk beteendeterapi
(DBT) har visat sig vara effektiv för dessa patienter. Andra personlighetsstörningar,
främst antisocial personlighetsstörning, åsamkar
framför allt omgivningen lidande och problem. Ofta förvärras detta
av koppling till missbruk och leder inte sällan till våld och kriminalitet.
I dagens samhällsklimat är riskbedömning av upprepat våld en viktig
men grannlaga uppgift. Inom rättspsykiatrin, där många av dessa
patienter finns, används idag bedömningsinstrument som har visat sig
kunna bidra till säkrare bedömning av återfallsrisk. För patienter
utanför den rättspsykiatriska vården är riskbedömningsinstrumentet
osäkrare och det finns för närvarande inget som kan ersätta en samlad
klinisk bedömning. Det är dock viktigt att riskbedömningar görs
på ett så strukturerat sätt som möjligt av patienter med personlighetsstörning,
särskilt vid samtidig förekomst av missbruk.

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

Positive parenting was examined as a protective resource against the adverse effects of negative life events on parentally bereaved children's mental health problems. The sample consisted of 313 recently bereaved children ages 8 to 16 and their current caregiver. Both the compensatory (direct effect independent of negative life events) and the stress-buffer (interactive effect with negative life events) protective resource models were examined and child gender was explored as a moderator of both models. Results revealed evidence for the compensatory protective resource model for both child and caregiver reports of mental health problems. No evidence of the stress-buffer model or child gender as a moderator was found. Implications for the understanding of children's responses to the death of a parent and the development and implementation of preventive interventions are discussed.

BACKGROUND:
In spite of the growing literature about adult attention-deficit hyperactivity disorder (ADHD), relatively little is known about the prevalence and correlates of this disorder.

AIMS:
To estimate the prevalence of adult ADHD and to identify its demographic correlates using meta-regression analysis.

METHOD:
We used the MEDLINE, PsycLit and EMBASE databases as well as hand-searching to find relevant publications.

RESULTS:
The pooled prevalence of adult ADHD was 2.5% (95% CI 2.1-3.1). Gender and mean age, interacting with each other, were significantly related to prevalence of ADHD. Meta-regression analysis indicated that the proportion of participants with ADHD decreased with age when men and women were equally represented in the sample.

CONCLUSIONS:
Prevalence of ADHD in adults declines with age in the general population. We think, however, that the unclear validity of DSM-IV diagnostic criteria for this condition can lead to reduced prevalence rates by underestimation of the prevalence of adult ADHD.

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

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

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

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

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

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

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

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

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

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

A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.

Individual and family characteristics that predict resilience among children exposed to domestic violence (DV) were examined. Mother-child dyads (n = 190) were assessed when the children were 2, 3, and 4 years of age. DV-exposed children were 3.7 times more likely than nonexposed children to develop internalizing or externalizing problems. However, 54% of DV-exposed children maintained positive adaptation and were characterized by easy temperament (odds ratio [OR] = .39, d = .52) and nondepressed mothers (OR = 1.14, d = .07), as compared to their nonresilient counterparts. Chronic DV was associated with maternal depression, difficult child temperament, and internalizing or externalizing symptoms. Results underscore heterogeneous outcomes among DV-exposed children and the influence of individual and family characteristics on children's adaptation.

This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.

Makten att forma samhället och sitt eget liv – jämställdhetspolitiken mot nya mål. 2006.66

The aim of this dissertation is to illustrate the manner in which assistance is distributed to the elderly according to the social services law in Sweden. It will focus on the processing officers/"street-level bureaucrats" who have been assigned, based on their profession, the task of assessing and deciding about the distributing of assistance. Central issues include the manner in which process officers go about their assignement and how their actual performance appears in comparision with the prescribed course of action. The dissertation´s starting pionts are in part, the legal regulations in the form of the social service law´s material and procedural rules, and in part the role as street-level bureaucrat and the construction of the client. The data which forms the basis for the conclusions of the dissertation consists of four studies conducted during the period 1995-2001. The first investigation - The Sundsvall study - is explorative and gives a first insight into how the process officers act and document the processing of a case. The process officers study is a national investigation with process officers from 27 municipalities. This second study focuses on the various ways to organise the handling process, and how these may influence the finding for assistance. The documentation study is also a national investigation of 29 municipalities. In this third study the written documentation of the case handling process is primarily exposed. Focus groups comprise the final sorce of data in which a group of processors in tree municipalities discuss their work. The process officers in the focus group describe several usual situations. With support from the various investigations, a picture appears which does not agree with prescribed course of action according to the legislation. What appears instead is a pattern of action which probably already existed before we began this work and which likely continues. This pattern of action has as we have established two faces, one of which constitutes an informal process where the actual construction of the "help-seeker" take place. Whitin the frame for this aspect, the so-called "service catalouge" has a decisive meaning, which in it´s own way is directed towards satisfying primarely physical and medical needs. The other "face" displays the formalised expresson of the informal process. This formal expression does not reveal all that is going on, only chosen elements. The action that we have found are institutionalized as an officially sanctioned institution since the practice is widely accepted and legitimized. The public intstitution is therefore built upon a pattern of action that consists both of formal rule, but primarily standards and routines which in many regards occur outside the formal rules. The consequences of a pattern of action that has been institutionalized and legitimized affects those seeking help who do not receive the individual assessment that they have a right to according to the law.

Doktorsavhandling 32

I denna avhandling undersöks på vilka sätt en juridisk och individuell rättighet som personlig assistans för människor med omfattande funktionshinder, kan förverkligas. Personlig assistans infördes 1994, som en del av lagen om stöd och service till vissa funktionshindrade (LSS). Avhandlingen fokuserar på hur förverkligandet kan ske främst genom lagstiftning, men också i praktiken med utgångspunkt ifrån rättighetens konstruktion.
Analysen är influerad av olika perspektiv, t.ex. rättsstatliga och välfärdsstatliga principer, men också av vissa centrala begrepp. De begrepp, som används för att förstå det empiriska materialet, är: rätt, norm och rättighet. Fallstudien används som forskningsstrategi och består av en dokumentstudie och en rättsfallsstudie. Därutöver används datamaterial från två empiriska studier där primärmaterial om personliga assistenter har samlats in.
Resultaten från studien visar att en social rättighet som personlig assistans är formad av det sammanhang och den tid den skapas i. Utformningen är också beroende av vilka intressenter som medverkar. En del av rättigheten personlig assistans är utformad som en juridisk rättighet och i rättslig mening stark. Olika normer om innehållet i rättigheten visar sig i på rättslig nivå och i praktiken. Grundläggande handikappolitiska intentioner om rättighen har påverkat praktiken och visar sig i denna som något ursprungligt och unikt. Rättigheten kan i denna mening förstås som förverkligad, även om den i stor utsträckning visar sig vara starkare som idé än som praktik.

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet

Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet

Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.

Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under
våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms
universitet, inom ramen för projektet Anhörigomsorgens pris: Omsorgsansvar och förvärvsarbete
i medelåldern.
Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och
försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi
hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på
grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller
skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och
känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en
gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka,
make, partner eller vän.
Studien visar att 42 procent av både kvinnor och män i medelåldern ger anhörigomsorg
minst en gång i månaden. I genomsnitt ger kvinnor 5,4 timmar hjälp i veckan, män 3,8
timmar. Det är således lika vanligt att män som kvinnor är omsorgsgivare, men det är fler
kvinnor än män som ger omfattande omsorg: 6 procent av kvinnorna och 4 procent av
männen i befolkningen hjälper en närstående varje dag. I den gruppen ger kvinnorna i
genomsnitt 19 timmar hjälp i veckan, männen närmare 13 timmar.
Denna rapport visar att anhörigomsorg i dagens Sverige har betydande konsekvenser för
omsorgsgivarnas välbefinnande, vardagsliv, arbete och ekonomi. För både kvinnor och män
gäller att ju mer omsorg man ger, desto större är risken att drabbas. Samtidigt är det
vanligare bland kvinnor än bland män att omsorgsgivandet leder till negativa konsekvenser
på en rad områden.
Den allvarligaste formen av påverkan på arbetslivet är att minska sin arbetstid eller sluta
arbeta helt:
 Av dem som ger anhörigomsorg minst en gång i månaden har 13 procent av kvinnorna och 8
procent av männen minskat sin arbetstid, sagt upp sig eller gått i pension tidigare än planerat
som en konsekvens av omsorgsgivandet.
 Av dem som ger daglig hjälp är motsvarande andelar 32 procent av kvinnorna och 27 procent
av männen.
 Uppräknat till befolkningen har drygt 90 000 kvinnor och drygt 50 000 män i åldrarna 45-66
år minskat sin arbetstid eller lämnat sitt arbete på grund anhörigomsorg.
Många får minskade inkomster som en följd av anhörigomsorg:
 Av dem som ger anhörigomsorg minst en gång i månaden har 16 procent av kvinnorna och
11 procent av männen fått minskade inkomster på grund av omsorgsgivande.
 Av dem som ger daglig hjälp är motsvarande andelar 40 procent av kvinnorna och 32 procent
av männen.
5
 Uppräknat till befolkningen har 114 000 kvinnor och 75 000 män i åldrarna 45-66 år fått
minskade inkomster på grund av anhörigomsorg.
Kvinnors välbefinnande och vardagsliv påverkas mer än mäns av att ge anhörigomsorg, även
när vi tar hänsyn till att fler kvinnor ger omfattande hjälp:
 Att omsorgsgivandet upplevs som fysiskt eller psykiskt påfrestande är nästan dubbelt så
vanligt bland kvinnor som bland män som ger anhörigomsorg minst en gång i månaden. För
mer än hälften av dessa kvinnor är omsorgsgivandet psykiskt påfrestande och för en dryg
fjärdedel är det fysiskt påfrestande.
 Cirka fyra av tio kvinnor och omkring var fjärde man som hjälper minst en gång i månaden
har upplevt svårigheter att hinna med fritidsaktiviteter eller att umgås med vänner till följd
av omsorgsgivandet.
 Drygt 5 procent av kvinnorna och drygt 2 procent av männen som hjälper minst en gång i
månaden har blivit sjukskrivna mer än två veckor på grund av omsorgsgivandet.
 Bland dem som hjälper en närstående varje dag är alla dessa svårigheter betydligt vanligare,
framförallt bland kvinnor: tre fjärdedelar av de kvinnor som ger daglig omsorg upplever
omsorgsgivandet som psykiskt påfrestande och lika många har svårt att hinna med
fritidsaktiviteter eller att umgås med vänner; drygt hälften upplever omsorgsgivandet som
fysiskt ansträngande och nästan var femte har blivit sjukskrivna i mer två veckor. Även
många män som ger daglig omsorg är påverkade på dessa sätt, men i mindre utsträckning.
Anhörigomsorg påverkar arbetssituationen i samma utsträckning för både kvinnor och män,
förutom vad gäller svårigheter att fokusera på arbetet som drabbar fler kvinnor:
 För mellan 12 och 19 procent av dem som ger anhörigomsorg minst en gång i månaden har
omsorgsgivandet medfört svårigheter att hålla sina arbetstider, att hinna med sina
arbetsuppgifter, att tacka ja till övertid eller nya uppdrag, eller att de förhindrats att delta i
möten eller kurser.
 Av dem som ger daglig hjälp är motsvarande andelar mellan 33 och 39 procent.
 På en punkt påverkas kvinnors arbetssituation betydligt mer än mäns av anhörigomsorg: 30
procent av de kvinnor som ger hjälp minst en gång i månaden har haft svårigheter att
fokusera på arbetet jämfört med 15 procent av männen.
Att använda semesterdagar eller andra former av betald eller obetald ledighet från arbetet
under enstaka dagar för att ge anhörigomsorg är vanligt bland både kvinnor och män. Längre
ledigheter, särskilt de som är betalda, är däremot mycket ovanliga:
 Hälften av både kvinnor och män som ger anhörigomsorg minst en gång i månaden har
använt kompledighet eller flex för att ge omsorg.
 Av dem som ger hjälp minst en gång i månaden har fyra av tio kvinnor och tre av tio män
använt semesterdagar för att ge omsorg.
 Färre än 2 procent av dem som ger hjälp minst en gång i månaden har haft närståendepenning
och endast en halv procent har varit tjänstlediga med lön under mer än två veckor
för att ge omsorg, medan drygt 2 procent har haft motsvarande tjänstledighet utan lön.
 Var tionde av dem som ger daglig hjälp har varit tjänstlediga utan lön under mer än två
veckor, vilket är tio gånger fler än de som varit tjänstlediga med lön under motsvarande
period.
6
Denna rapport visar att många kvinnor och män betalar ett högt pris för att ge anhörigomsorg
och att priset är högre ju mer omsorg de ger. En klar majoritet av de drabbade är
omsorgsgivare till äldre. Samtidigt vet vi att de flesta äldre är nöjda med äldreomsorgen och
föredrar att få hjälp därifrån, snarare än från barnen eller andra släktingar. Andelen av
hjälpbehövande äldre som får hjälp av sina barn ökat under flera decennier, samtidigt som
andelen av de äldre som får del av äldreomsorgen har minskat. Särskilt allvarlig är de senaste
årens dramatiska minskning av äldreboenden – nästan var fjärde plats har försvunnit under
2000-talet.
För att anhörigomsorg ska kunna vara ett så frivilligt val som möjligt för både den som
behöver omsorg och hans eller hennes anhöriga, krävs att samhället erbjuder olika former av
omsorgsinsatser som svarar mot individuella behov och vardagsvanor hos både äldre och
anhöriga. En väl utbyggd och väl fungerande äldreomsorg är en förutsättning för att
anhöriga till omsorgsbehövande äldre ska kunna förvärvsarbeta och försörja sig på samma
villkor som andra.

Detta är en målgruppsanpassad version av rapporten Effekter av stöd till anhöriga som vårdar äldre med demenssjukdom eller sköra äldre – en systematisk översikt. Den riktar sig till alla som arbetar med anhöriga och beskriver effektiva sätt att ge stöd till anhöriga som vårdar eller stödjer äldre med demenssjukdom.

Avhandling

This dissertatian i concerned with the ways in which caregivers within elderly care reason and respond to questions concerning ethnicity. The research is based on a discursive analysis of a focus group study; interwiews with caregivers; and participant observation from fieldwork within one elderly care team. The main ambition is to present an alternative model for understanding how ethnicity becomes important in relation to care. A primary purpose it to place elderly care within a new theoretical perspective, particularly by shifting the focus from ethnicity per se to the relational aspect of constructions of ethnicity. I do that by showing how the ethnic dimension often is located in language use, in the relations created by various discourses and their institutional conditions. By applying the concept of doing to the analysis of ethnicity, I can show how ethnicity is a product of social interaction rather than a pre-defined role or mode of being. To do ethnicity in the context of care giving is to be assigned and take discursively created subject positions through the constant interactions of the workplace. Through such an analysis it becomes possible to understand ethnicity and ethnic relations as a continuous process revolving around the conceptions of each other's identities. By employing doing ethnicity as an analytical tool, it becomes possible to understand how caregivers, sometimes unwittingly, use ethnicity as a marker for thier constructions of care.

Den psykiatriska vården och det offentliga stödsystemet för personer med psykisk funktionsnedsättning är i dag huvudsakligen ett samhälls­baserat servicesystem med tyngdpunkt i öppna vårdformer. Det finns emellertid uppenbara brister i systemets förmåga att möta vård- och stödbehovet hos dessa personer, liksom det finns övergripande brister i deras livssituation i samhället som helhet. Trots omfattande reformer kännetecknas fortfarande situationen för personer med psykiska funktionshinder i många avseenden av diskriminering och andra former av stigmatisering samt ekonomisk, social och politisk marginalisering och maktlöshet. Upplevelser av bristande medinflytande och kontroll över den egna vård- och stödsituationen påverkar dem också negativt.

Trots svårigheter att implementera evidensbaserade och effektiva insatser samt starka vetenskapliga belägg för att de reformer som genomdrivits i syfte att förbättra livssituationen i många avseenden inte har nått målen, finns det ändå anledning till optimism. Det här är den andra reviderade upplagan av boken, och här redovisas rehabiliteringsinsatser och andra interventioner som visar att det finns effektiva sätt att förändra situationen.

Att leva med psykisk funktionsnedsättning vänder sig till studerande inom sociala eller vårdinriktade högskoleutbildningar, men också till personer inom vård- och stödverksamheter som i arbetet möter personer med psykiska funktionsnedsättningar.

Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.

Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.

Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.

En individ befinner sig alltid i ett sammanhang. Därför är det av stor betydelse att fokusera välbefinnande och hälsa utifrån ett familjeperspektiv. Familjen spelar en allt större roll inom vård och omsorg och har fått allt större betydelse även för vård- och omsorgspersonal. Att hjälpa familjen att se styrkor och resurser för att hantera situationer av ohälsa och sjukdom är därför en viktig del i omvårdnadsarbetet.

Att möta familjer inom vård och omsorg beskriver teoretiska grunder för familjefokuserad omvårdnad och ger konkreta exempel från olika kontexter. Här presenteras också hur ett familjefokuserat synsätt kan implementeras i vård, omsorg och forskning som ett komplement till rådande perspektiv i vården, såsom till exempel personcentrerad vård, patientcentrerad vård och anhörigvård. Boken vänder sig till studenter inom vård och omsorg på grund- och avancerad nivå, samt till yrkesverksamma, anhörigvårdare, eller andra med intresse för familjers situation när en familjemedlem drabbas av ohälsa eller sjukdom.

Boken ger grundläggande kunskaper om flyktingars livsvillkor i ursprungslandet och i exilen. Den tar upp upplevda traumatiska händelser som politisk förföljelse, förtryck, fängelse, krig och allvarliga förluster.

Mötet mellan flyktingen och Sverige och den psykologiska process som därvid uppstår – flyktingkrisen – analyseras också.

En avsevärd del av boken ägnas insatser och åtgärder för nyanlända flyktingar.

Att möta flyktingar vänder sig i första hand till studenter och personal inom vården och socialtjänsten. Även andra som möter flyktingar inom t.ex. skolor, frivilligorganisationer eller på förläggningar kan ha nytta av den.

Nära och kära - att möta och bemöta anhöriga i äldreomsorgen ger dig som arbetar i äldreomsorgen vägledning i vad som är viktigt att tänka på i mötet med de anhöriga. Bokens första del handlar om människans villkor och förutsättningar för kommunikation och är giltiga för de flesta arbetsplatser inom vård och omsorg. I bokens andra del anpassas kunskaperna på mötet med anhöriga och anhörigvårdare till äldre, sjuka och funktionshindrade. I boken finns också förslag till reflektioner, egna och i grupp, samt tips för vidare läsning.

Den senaste upplagan, utgiven oktober 2010, är utökad med ett kapitel som beskriver en äldres situation ur fem olika perspektiv: den anhöriga, sjukgymnasten, kontaktpersonen, chefen på äldreboendet samt biståndshandläggaren. Alla skapar sin bild utifrån sina förutsättningar och kapitlet ger en insikt i den komplexitet som finns inom äldreomsorgen.

Nära och kära är skriven för personal inom äldreomsorgen. Men den får gärna inspirera alla som i sitt yrke möter anhöriga! Författare är Margareta Normann och Kristina Fröling .

Den enda existerande bokenom samverkan från ett föräldraperspektiv! Den teoretiska delen om autism är mycket lättförståelig och problematiseringen utgår från FN:s regler om funtionshider som ett problem i relation till omgivningen. Texten föreslår ett förhållningssätt som bygger på samarbete kring barnets starka sidor. Boken granska också kritiskt kommunernas förmåga att organisera hjälp och stöd för de drabbade familjerna enligt LSS-lagstiftningen

Upplands Väsby kommun tillhör en av de få kommuner i landet som bedriver ett strukturerat
anhörigprogram. Trots att det funnits någon form av anhörigarbete i ca 15 år, de senaste 5 åren
med tydligare struktur, har verksamheten hittills inte dokumenterats.

Syftet med denna rapport är att ge en utförlig beskrivning av anhörigprogrammets innehåll,
struktur och förutsättningar. Rapporten vill också skapa en förståelse för den anhöriges
livssituation och behov av egen hjälp. "Vad familjen behöver är undervisning om drogen alkohol,
vilka problem det kroniska missbruket ger upphov till samt sjukdomen alkoholism. Familjen
behöver dessutom lära sig hur sjukdomssymtomen påverkar familjen. Familjen behöver även
hjälp med att kartlägga det egna beteendet för att förstå hur det kan överensstämma med, eller till
och med befrämja alkoholistens drickande. De måste också komma till insikt om sina egna
känslor för att realistiskt kunna förstå problemets dimensioner och vad som krävs av dem. Till
följd av detta måste de undersöka vilka alternativ de har att välja mellan för att lösa problemet.
Framför allt behöver familjemedlemmarna stöd och uppmuntran för att kunna leva sina egna liv
trots alkoholismen. Genom att göra det ökar, paradoxalt nog, chanserna att avbryta den
alkoholistiska processen" (Kinney o Leaton 1997).
Ytterligare ett syfte med rapporten är att mäta om programmet ökar den anhöriges psykiska
välbefinnande, och om programmet påverkar den anhörige beteendemönster och känslor i
relation till den beroende.
Metoden jag använt för att hitta svaren på den första frågan har varit att sammanställa det
material som finns runt de olika temana.
För att få svar på de två andra frågeställningarna har jag använt en självskattningsenkät. Dvs.
deltagarna har själva uppskattat sitt mående utifrån en enkät med 4 svarsalternativ. Mätningen har
skett vid tre tillfällen, före programmet, vid programmets slut och en månad efter programmets
slut. Antal deltagare i utvärderingen är 15 personer, uppdelat på tre olika anhörigprogram.
En svaghet med denna metod är att utvärderingen sträcker sig under en relativt kort tid. Från
första till sista mättillfället är det ca 12 veckor. Förändringsprocesser tar lång tid och för att få en
mer rättvis bild av programmets påverkan skulle en mätning efter ytterligare ett år behövas.
En ytterligare svaghet är att deltagarantalet i utvärderingen är litet. Det går därför inte att dra
några stora slutsatser av resultatet, utan snarare tendenser. Det är dock en god ansats till ett
fortsatt arbete med utvärdering av programmet. Självskattningsenkät har visat sig vara ett
fungerande kvalitetsmätningsinstrument.
Dispositionen på rapporten är följande: Del 1 innehåller den beskrivande delen av
anhörigprogrammet med en historisk tillbakablick. Del 2 är den utvärderande delen av rapporten,
där undersökningsmetoden och sammanställningen av enkätundersökningarna redovisas.
Resultaten visar att det psykiska välbefinnandet tydligt ökar för alla tre grupper över tid. Takten
för ökningen ser olika ut och det kan härledas till deltagarnas olika livssituationer under
programmet. Där deltagarna fortfarande lever med partner i ett aktivt missbruk är den anhöriges
förändring långsammare. Resultatet visar också att deltagarna upplever en förändring i huruvida
de påverkats av sin anhöriges missbruk i såväl känslor som beteendemönster. Denna förändring
är mindre samstämmig och visar ganska stora variationer i de olika grupperna.

Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.

Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.

Syftet med studien är att pröva om struktur och språk enligt Klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY, kan användas vid handläggning av vårdbidragsärenden för att göra utredningar och beslut tydligare och mer enhetliga och därigenom förbättra rättssäkerheten. I tillämpningen av reglerna om vårdbidrag ska Försäkringskassan göra en individuell bedömning i varje enskilt ärende. Det finns också krav på likformighet och transparens i handläggningen. ICF-CY är utvecklat av Världshälsoorganisationen (WHO) och erbjuder ett universellt gemensamt språk för att underlätta dokumentation och kartläggning av barnets funktionsförmåga och hälsa i sin miljö.

Vårdbidraget är ett statligt stöd till föräldrar med barn som har en funktionsnedsättning. Syftet med vårdbidraget är att föräldrarna ska ha möjlighet att ge den tillsyn, vård och stöd som krävs för att barnet ska kunna utvecklas på bästa sätt.

Registeranalysen i rapporten visar på skillnader i vårdbidragets omfattning utifrån bland annat region, kön och mottagarens socioekonomiska tillhörighet. Tyvärr kan man inte säga om dessa skillnader är sakliga eller osakliga, det vill säga om de skillnader som observeras kan förklaras av barnens bedömda tillsyns- och vårdbehov.

Det finns inga uppgifter i register om grunderna för ett beviljat vårdbidrag, det vill säga vilken funktionsförmåga eller vilket tillsyns- och vårdbehov barnet har. I den här studien har information i 264 ärenden gällande förstagångsansökningar om vårdbidrag översatts till struktur och språk i ICF-CY. Rapporten redovisar det som finns skrivet om hur barnet fungerar i sin miljö när innehållet har översatts och tolkats.

När innehållet i utredningarna översätts, handlar merparten av utredningarna, både Försäkringskassans sammanfattningar och motiven för beslut som skickas till den sökande, om sådant som barnen kan göra och faktiskt gör, eller har svårigheter att utföra. Merparten av utredningarna berör aspekter på hur barnet genomför enstaka eller flera uppgifter och hur de hanterar krav medan endast ett fåtal utredningar handlar om hur barnet genomför dagliga sysslor och uppgifter som att ta hand om personliga föremål och att hjälpa andra.

Resultaten tyder på att en tillämpning av struktur och språk enligt ICF-CY i handläggningen av vårdbidrag skulle öka likformigheten, samtidigt som man skulle undvika att samla in irrelevant information och därigenom kunna spara tid i handläggningen. Om man klassificerar funktionsnedsättning på detta sätt, blir det också möjligt att dokumentera funktionsnedsättning i register på samma sätt som diagnos registreras idag, vilket underlättar utvärdering.

Anhöriga gör stora insatser i vården och omsorgen av sina närstående. Men som anhörig kan man också behöva stöd och avlastning.

Att utveckla anhörigstöd
Vilka är de personer som stöttar och vårdar en närstående, vilket stöd efterfrågar de och vad kan samhället och den enskilda arbetsplatsen erbjuda? Vilken värdegrund styr bilden av de anhöriga – ses de som en värdefull resurs eller är de en belastning i arbetet kring den närstående?

Ett sätt att uppfylla målen med gällande lagstiftning är att arbetsplatserna ska formulera rutiner för hur de ska stötta och samarbeta med anhöriga i det dagliga arbetet. Boken ger praktiska verktyg för hur man steg för steg, med de anhöriga själva som sakkunniga, kan utveckla arbetsplatsens anhörigstöd. Författaren beskriver den anhörigvänliga arbetsplatsen och ger ett konkret förslag till hur rutiner för anhörigstöd och anhörigsamverkan kan tas fram. Innehållet presenteras på ett lättillgängligt sätt och läsaren får många fallbeskrivningar och förslag till diskussionsämnen att utgå ifrån.

Att utveckla anhörigstöd vänder sig till arbetsgrupper/verksamheter inom vård och omsorg samt socialtjänst som vill utveckla arbetsplatsens anhörigstöd. Utvecklingsarbetet föreslås ske genom att arbetsgruppen möts vid ett antal reflektionsträffar kring bokens innehåll. Boken vänder sig både till baspersonal och ledare, och den kan dessutom utgöra ett handfast verktyg för anhörigombud och anhörigkonsulenter som utbildar och handleder arbetsgrupper inom området anhörigstöd.

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

Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.

Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.

Anhörigas insatser för en demenssjuk familjemedlem är avsevärda och är en mycket stor
samhällsresurs. Flertalet studier kring anhörigas erfarenheter har genomförts i större städer och det är
brist på kunskap kring hur landsbygdens anhöriga upplever sin situation. Det övergripande syftet
med denna avhandling var att utveckla och fördjupa kunskapen om relationen mellan boplatsen, här
storstad och landsbygd, och anhörigas upplevelser av att ge omvårdnad till en närstående med
demenssjukdom. Avhandlingens två delstudier utgår från ett socialkonstruktionistiskt perspektiv där
människan anses konstruera sina liv både i samspel med andra och med platsen de bor på. Platsen är
inte endast ett geografiskt område utan även en plats bestående av sociala relationer. Anhöriga i
storstaden och på landsbygden antogs forma sina liv på olika sätt som kunde påverka situationen som
anhörigvårdare. Syftet med studie I var att beskriva och jämföra anhörigas reaktioner på att ge
omvårdnad till en närstående med demenssjukdom, i storstad och på landsbygd, samt att undersöka
sambanden mellan aspekter på vårdande och socio-demografiska faktorer. Den genomfördes som en
prospektiv tvärsnittsstudie med sammanlagt 102 (57 storstad+45 landsbygd) deltagare. Den svenska
versionen av The Caregiver Reaction Assessment Scale (CRA) användes och bestod av 27 positiva
och negativa påståenden fördelade inom fem delområden ("vårdar-tillfredställelse"; brist på
familjestöd; påverkan på ekonomi, hälsa och vardagsliv). Data analyserades med beskrivande statistik.
Student´s T-test användes för att undersöka skillnader, Chi-2-tester för proportioner och linjär
regressionsanalys användes för att undersöka sambanden mellan de fem delområdena och sociodemografiska
variabler. Syftet med studie II var att utveckla en fördjupad förståelse för anhörigas
förhållningssätt till sin situation, i storstad och på landsbygd, när en närstående drabbats av
demenssjukdom. Narrativa intervjuer genomfördes med sammanlagt 23 anhöriga (11 storstad+12
landsbygd). Frågorna berörde vardagsliv och arbete både nu, med en demenssjuk närstående, och
tidigare, samt boplatsens och det sociala livets betydelse. Intervjuerna analyserades utifrån en
hermeneutisk ansats. Resultatet från regressionsanalysen visade att vare sig boplats eller
utbildningsnivå hade något samband med hur anhöriga skattade sin situation (I). Flertalet anhöriga
både på landsbygden och i storstaden kände däremot en tillfredställelse med att kunna ta hand om sin
närstående trots att situationen hade stor påverkan på vardagslivet (I-II). De vuxna barnen upplevde en
konflikt mellan sina och den egna familjens behov och den sjuke förälderns omvårdnadsbehov (II)
som påverkade vardagslivet i högre utsträckning än vad det gjorde för de makar som vårdade sin
partner (I). Kvinnorna skattade en större påverkan på ekonomin och mer påverkan på vardagslivet än
männen. Men anhöriga på landsbygden tycktes få mer hjälp från familj och andra än de i storstaden
(I). Intervjustudien visade att de anhöriga på landsbygden tycktes ha en mer kollektiv syn på familjen
och parrelationen som kom till uttryck i en större acceptans för livets gång och behov av att bevara det
normala livet. Storstadens anhörigvårdare däremot tycktes ha en mer individualistisk syn, vilket kom
till uttryck i en större frustration över situationen mer präglad av pliktuppfyllelse (II). Det är
förmodligen är lika belastande vara anhörig till en närstående med demenssjukdom vare sig man bor i
storstaden eller på landsbygden. Samtidigt fanns det en variation av förhållningssätt till situationen
som anhörigvårdare, som påverkades av olika sättet att se sig på själv i förhållande till familjen och
parrelationen, vilket får implikationer för utformningen av stödinsatser.
Key words: dementia, family caregivers, qualitative research, narrative interviews, Caregiver Reaction
Assessment Scale (CRA), regression model, urban and rural areas, nursing

Broschyren ger en kortfattad introduktion till vad ADHD är, hur det kommer till uttryck i vardagen, vad vi vet om orsakerna, bemötande och förhållningssätt samt vilken behandling som finns att få.

Avhandlingens övergripande syfte är att tolka och beskriva innebörder av stöd,
utifrån att vara förälder till barn med funktionsnedsättning och att vara professionella
stödjare. Datainsamling har skett i form av berättande intervjuer med
39 föräldrar (23 mödrar och 16 fäder) och 9 professionella (7 kvinnor, 2 män)
från olika verksamheter. Samtliga intervjuer har analyserats med hjälp av fenomenologisk
hermeneutisk metod.
Innebörder av att vara förälder till barn med funktionsnedsättning (studie I)
har tolkats som en medvetenhet om viktiga värden i livet. Barnet har ett inneboende
värde som en unik person och föräldrarna strävar efter att göra sitt
bästa för barnet. Denna strävan innebär att konfrontera oro, osäkerhet och
rädsla i vården av barnet och andra personers nedvärdering av barnet. I föräldrarnas
strävan att tillmötesgå barnets olika behov, ingår också att anpassa egna
behov efter barnets. Den fördjupade förståelsen av studiens resultat är, att det
handlar om en strävan att möjliggöra för barnet att leva ett gott liv.
Innebörder av att få stöd av professionella (studie II) har tolkats som att
föräldrar och barn blir bekräftade som värdefulla personer och att föräldrarna
uppnår trygghet och kompetens i föräldraskapet och får ett hopp för barnets
framtid. Erfarenheter av att inte få stöd, medför en kamp mot de professionella,
för att kräva det stöd som föräldrarna anser att de och barnet behöver.
Innebörder av att vara professionell stödjare (studie III), består av att ha
personlig filosofi, som är integrerat i sättet att vara och handla som stödjare.
Det innebär att vara trygg i hoppet om att det alltid går att göra något för att
hjälpa, genom att söka unika lösningar i den aktuella situationen. Tillit till för-
äldrar som partners och att få deras tillit, samt att möjliggöra för föräldrarna att
uppnå kompetens och trygghet i vården av sina barn är andra innebörder. Detta
har tolkats som en frihet från att vara bunden av byråkrati och prestige och en
möjlighet att vara äkta, följa sin filosofi och att vara i samklang med barn och
föräldrar.
Innebörder av informellt stöd (studie IV) har tolkats som en livsberikande
gemenskap, där barnet, innefattas i kärleksfulla relationer med närstående och
har en naturlig plats i samhället. Att som föräldrar kunna dela glädje, oro och
sorg med andra personer och att få möjlighet att uppleva lättnad och spontanitet
i det dagliga livet, är andra innebörder av informellt stöd. Helhetsförståelsen
av de fyra studierna är, att stöd av professionella i sin tur är ett stöd i föräldrars
etiska förpliktelse i deras strävan att möjliggöra för barnet att leva ett gott liv.
Informellt stöd betyder att föräldrar och barn är inneslutna i trofasta och berikande
relationer med andra.

Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov. Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga. Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.

Doktorsavhandling

The overall aim was to describe the siblings' thoughts on and experiences of needs, problems and supports when their brother or sister is being treated or undergoing follow-ups for or has died of cancer. The thesis uses a life-world perspective with open interviews (Papers I-IV). It describes the siblings' needs and issues when a brother or sister dies of cancer n=10 (Paper I), and it develops an understanding of the everyday experiences of siblings with a brother or sister who is receiving or has completed treatment for a cancer disease n=10 (Paper II). The thesis looks at the siblings' thoughts on their experiences of being a sibling of a brother or sister during his or her treatment or who has been treated for or has died from cancer n=20 (Paper III). The thesis also describes the siblings' experiences of being involved in a therapeutic support group when the family had or had had a child with cancer n=15 (Paper IV). The methods used to analyse the interview texts were qualitative content analysis (I, III, IV) and phenomenological hermeneutic analysis (II). The findings show that the sibling relationships strengthened. The siblings lacked support and felt they were not being given information. There was underlying anxiety and loneliness. There was a new consideration in their daily life with the sick brother or sister constantly at the centre. It was very important that the family felt well. Thoughts about death were not allowed and they tried to repress them. Anticipatory grief started already with the diagnosis. The grief when a brother or sister dies varies over time and in how it manifests itself, and there are short breaks. Therapeutic support groups with tools such as pictures and paintings validated the siblings' feelings and gave them support regardless of their age and sex. The results demonstrate a need to preserve the sibling's health. Consideration and respect for all family members may lessen suffering. Regular and appropriate information about the disease, treatment and the patient's condition is needed, as well as the offer of therapeutic support, individually or in groups.

Våld i nära relationer är ett folkhälsoproblem, med allvarliga fysiska och psykiska konsekvenser för den som utsätts och kan även leda till svåra sociala problem. Vanligast är att kvinnor utsätts för våld i nära relationer, och den som utövar våldet är oftast en manlig partner eller före detta partner. Barn som tvingas bevittna våld i sin närmiljö riskerar att fara mycket illa. Den i särklass allvarligaste riskfaktorn för barnmisshandel är om det förekommer våld mellan vuxna i hemmet.

Många våldsutsatta kvinnor söker hälso- och sjukvård för diffusa fysiska och psykiska symtom, men de berättar sällan om våldet eftersom de inte alltid sätter sina hälsoproblem i samband med våldsutsattheten. Många våldsutsatta kvinnor söker sig även till socialtjänsten för att få stöd och hjälp, exempelvis med ansökan om ekonomiskt bistånd eller andra insatser, utan att de berättar om våldet de blir utsatta för.

En förutsättning för att våldsutsatta ska få adekvat vård, stöd och hjälp är att våldsutsattheten upptäcks. Att personal inom hälso- och sjukvården och socialtjänsten frågar om erfarenhet av våld kan underlätta för den våldsutsatta att berätta om sin situation och att söka stöd och hjälp.

Socialstyrelsen rekommenderar hälso- och sjukvården att alla kvinnor som uppsöker mödrahälsovården bör tillfrågas om erfarenhet av våld. Det vetenskapliga stödet för denna rekommendation är forskning som visar att rutinfrågor inom mödrahälsovården markant ökar upptäckten av våld. Mödrahälsovården lyfts också fram som en lämplig verksamhet att ställa frågor i, eftersom de gravida kvinnorna befinner sig i en viktig fas i livet och ofta kan ha en regelbunden kontakt med personalen. Även WHO anger mödrahälsovården som en verksamhet där rutinfrågor om våld kan ställas.

Socialstyrelsen rekommenderar att hälso- och sjukvården bör fråga alla kvinnor som uppsöker psykiatrisk vård om erfarenhet av våld. Våldsutsatta kvinnor är överrepresenterade inom den psykiatriska vården. Våld i nära relationer kan även leda till allvarlig psykisk ohälsa. WHO har framhållit att rutinfrågor om våld kan vara en del av god klinisk praxis, särskilt eftersom detta kan påverka behandling och vård av den våldsutsatta.

Socialstyrelsen rekommenderar att hälso- och sjukvården bör ta upp frågan om våld i alla ärenden inom barn- och ungdomspsykiatrin (BUP). Forskning visar att psykisk ohälsa är vanlig hos barn som lever med våld i familjen. Att ta upp frågan om våld i alla ärenden inom BUP kan innebära att upptäckten av barn som bevittnat våld ökar och, liksom inom vuxenpsykiatrin, utgöra en del av god klinisk praxis.

Nästa steg i arbetet blir att ta fram rekommendationer för missbruks- och beroendevården.

Socialstyrelsen rekommenderar hälso- och sjukvården och socialtjänsten att erbjuda personal fortbildning om våld i nära relationer, i syfte att upptäcka våldet. En anledning till att personal idag inte ställer frågor om våld kan vara att man anser sig ha otillräckliga kunskaper och saknar beredskap för att hantera svaret. Därför är det angeläget att öka kunskaperna inom hälso- och sjukvården och socialtjänsten om våld i nära relationer.

Rapport 4 från projektet "Barn som anhöriga" från CHESS, Stockholms universitet/Karolinska Institutet i samarbete med Institutionen för socialt arbete vid Stockholms universitet.

Rapporten belyser hälsa och livsvillkor för unga vuxna i åldern 30-35 år i en anhöriggrupp som växt upp med föräldrar som vårdades på sjukhus på grund av missbruk och/eller psykisk sjukdom, och baseras i sin helhet på uppgifter från nationella register.

Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov.
Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga.
Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.

Preschool to school-age trajectories of 242 children, including 37 with insecure-disorganized and 66 with insecure-organized attachment patterns, were examined. Child attachment and stressful life events (the latter retrospectively) were measured at ages 5-7, and mother-child interactive quality, parenting stress, marital satisfaction, and teacher-reported behavior problems were evaluated concurrently and 2 years earlier. Results indicated that all three disorganized subgroups had poorer mother-child interactive patterns and more difficult family climates than secure or insecure-organized children. The controlling-punitive group showed significant increases in maternal reports of child-related stress between preschool and school age. The controlling-caregiving group showed greater likelihood of loss of a close family member, and mothers of the insecure-other group reported lower marital satisfaction and greater likelihood of their own or a spouse's hospitalization. Controlling-punitive children had higher externalizing scores, and controlling-caregiving children higher internalizing scores, than secure children.

Attachment at Early School Age and Developmental Risk: Examining Family Contexts and Behavior Problems of Controlling-Caregiving, Controlling-Punitive, and Behaviorally Disorganized Children. (PDF Download Available). Available from: https://www.researchgate.net/publication/8471077_Attachment_at_Early_School_Age_and_Developmental_Risk_Examining_Family_Contexts_and_Behavior_Problems_of_Controlling-Caregiving_Controlling-Punitive_and_Behaviorally_Disorganized_Children [accessed Jan 3, 2016].

In 1985 the SRCD Monographs series broke with tradition to publish a collection of papers exploring the new growth and directions of attachment theory and research. In the ensuing decade, many of the questions that were posed in that collection-such as, for instance, those concerning cognitive representations of attachment-as well as the methods and analytic approaches used by some of the authors to address these questions (e. g., Q-techniques) are no longer novelties but rather stand as paradigmatic examples of mainstream attachment research. In the present collection, several of the issues raised in the 1985 Monograph are revisited; these include the meaning and implications of attachment in cultures other than the United States and Western Europe (Posada, Gao, et al.), the nature of relations between attachment and temperament constructs (Seifer & Schiller), the links between quality of attachment and the mother's concurrent sensitivity (Pederson & Moran), and the association seen in children between attachment and mood (Lay, Waters, Posada, & Ridgeway). New approaches to traditional questions are explored by examining the relations among a child's different attachment relationships (Sagi et al.) and by constructing strategies for classification of infant-mother attachments on the basis of observations made in the home (Strayer, Verissimo, Vaughn, & Howes); the study of the relation between infant secure-base behavior and maternal support is extended to the investigation of macaque pairs (Kondo-Ikemura & Waters). New questions about links between attachment and other intimate relationships are considered; these include the relation between adults' attachment history and both the quality of their relationship with an intimate partner (Owens et al.) and the organization of secure-base behavior that their child shows in the home (Posada, Waters, Crowell, & Lay). Focusing on recent advances in research on cognitive development, consideration is also given to methodological issues relating to the assessment of young children's mental representations of relationships (Oppenheim & Waters). In all, the aim of the Monograph is both to consolidate our understanding of the empirical advances that have occurred in this domain of research over the last decade and to stimulate investigators to move beyond current understandings as well as current empiricism.

The age range of 18–36 months was selected as to best expand upon our previous research comparing virtual parental presence, physical presence, and complete parental absence (Tarasuik et al., 2011), as the results were strongest within this age range, and Attachment behaviors are known to occur with this age range (e.g., The MacArthur Preschool Strange Situation; Cassidy and Marvin, 1992).

Children born to mothers who had abused alcohol throughout pregnancy had severe behavioural and intellectual problems which remained at age 11 to 14 years. Of 24 children examined, 10 had attention deficit hyperactivity disorder (ADHD) with or without developmental coordination disorder, two had Asperger syndrome, and one had an autistic-like condition not meeting the criteria for Asperger syndrome. Six of these 24 attended special schools for the mentally retarded and a further 11 were given special education, leaving only seven attending regular schools without any type of support. The children had difficulties in mathematics, logical conclusions, visual perception, spatial relations, short-term memory, and attention. Sixteen children lived in foster homes. There was a clear correlation between the occurrence and severity of the neuropsychiatric disorder and the degree of alcohol exposure in utero.

Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes resulting from their interactions, and to understand how these variables relate to each other. Video observations of 17 staff-client dyads were coded using partial interval recording. The results showed considerable variation across individuals and dyads. In general, persons with PIMD directed the attention of staff members infrequently. The staff members frequently directed their clients' attention towards a topic of interest but did not often use the tactile modality. Within the staff-client dyad, there was not much joint attention; however, shared attention episodes occurred frequently. Shared attention and joint attention are strongly correlated. A negative correlation was found between clients not using attention-directing behaviours and staff members using tactile methods to direct the attention, and joint attention episodes. This study presents both directions for future research and practical implications.

The association between attention-deficit hyperactivity disorder (ADHD) and criminality has been increasingly recognized as an important societal concern. Studies conducted in different settings have revealed high rates of ADHD among adolescent offenders. The risk for criminal behavior among individuals with ADHD is increased when there is psychiatric comorbidity, particularly conduct disorder and substance use disorder. In the present report, it is aimed to systematically review the literature on the epidemiological, neurobiological, and other risk factors contributing to this association, as well as the key aspects of the assessment, diagnosis, and treatment of ADHD among offenders. A systematic literature search of electronic databases (PubMed, EMBASE, and PsycINFO) was conducted to identify potentially relevant studies published in English, in peer-reviewed journals. Studies conducted in various settings within the judicial system and in many different countries suggest that the rate of adolescent and adult inmates with ADHD far exceeds that reported in the general population; however, underdiagnosis is common. Similarly, follow-up studies of children with ADHD have revealed high rates of criminal behaviors, arrests, convictions, and imprisonment in adolescence and adulthood. Assessment of ADHD and comorbid condition requires an ongoing and careful process. When treating offenders or inmates with ADHD, who commonly present other comorbid psychiatric disorder complex, comprehensive and tailored interventions, combining pharmacological and psychosocial strategies are likely to be needed.

The association between attention-deficit hyperactivity disorder (ADHD) and criminality has been increasingly recognized as an important societal concern. Studies conducted in different settings have revealed high rates of ADHD among adolescent offenders. The risk for criminal behavior among individuals with ADHD is increased when there is psychiatric comorbidity, particularly conduct disorder and substance use disorder. In the present report, it is aimed to systematically review the literature on the epidemiological, neurobiological, and other risk factors contributing to this association, as well as the key aspects of the assessment, diagnosis, and treatment of ADHD among offenders. A systematic literature search of electronic databases (PubMed, EMBASE, and PsycINFO) was conducted to identify potentially relevant studies published in English, in peer-reviewed journals. Studies conducted in various settings within the judicial system and in many different countries suggest that the rate of adolescent and adult inmates with ADHD far exceeds that reported in the general population; however, underdiagnosis is common. Similarly, follow-up studies of children with ADHD have revealed high rates of criminal behaviors, arrests, convictions, and imprisonment in adolescence and adulthood. Assessment of ADHD and comorbid condition requires an ongoing and careful process. When treating offenders or inmates with ADHD, who commonly present other comorbid psychiatric disorder complex, comprehensive and tailored interventions, combining pharmacological and psychosocial strategies are likely to be needed.

The diagnosis of attention-deficit/hyperactivity disorder (ADHD) is based on well defined criteria, which describe a number of symptoms. It is important to consider the context of the symptoms, in terms of the influence of the child's family and school. Although stimulant medications benefit selected children they may not benefit all children with symptoms of ADHD. The incidence of ADHD increases with social disadvantage. There is a potential danger of using stimulant medication alone to treat children with complex psychosocial problems, associated with social disadvantage, including Aboriginal children. We desperately need better training in the management of ADHD and better access to child psychiatrists.

A state-wide survey of 453 clinicians serving people with severe mental illness in community mental health centers evaluated the degree to which they provide services to families and their perceptions of barriers to developing such services. Most clinicians did not provide many services to families and reported barriers related to the family or client (e.g., family's lack of interest) and their own work environment (e.g., heavy workload). Clinicians who had received prior training on working with families provided more services, had more positive attitudes toward family, and felt more competent about their knowledge, confirming the importance of staff training.

Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.

Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.

Much evidence suggests that the mental lexicon is organized into auditory neighborhoods, with words that are phonologically similar belonging to the same neighborhood. In this investigation, we considered the existence of visual neighborhoods. When a receiver watches someone speak a word, a neighborhood of homophenes (ie, words that look alike on the face, such as pat and bat) is activated. The simultaneous activation of a word's auditory and visual neighborhoods may, in part, account for why individuals recognize speech better in an auditory-visual condition than what would be predicted by their performance in audition-only and vision-only conditions. A word test was administered to 3 groups of participants in audition-only, vision-only, and auditory-visual conditions, in the presence of 6-talker babble. Test words with sparse visual neighborhoods were recognized more accurately than words with dense neighborhoods in a vision-only condition. Densities of both the acoustic and visual neighborhoods as well as their intersection overlap were predictive of how well the test words were recognized in the auditory-visual condition. These results suggest that visual neighborhoods exist and that they affect auditory-visual speech perception. One implication is that in the presence of dual sensory impairment, the boundaries of both acoustic and visual neighborhoods may shift, adversely affecting speech recognition.

As AAC use continues to flourish and new technology revolutionizes the field, tomorrow's service providers need current, authoritative information on AAC for children and adults with communication disorders. That's why David Beukelman and Pat Mirenda have revised and updated the bestselling Augmentative and Alternative Communication—the trusted, widely adopted graduate-level text on communication disorders and AAC. The foundational textbook for SLPs, OTs, PTs, teachers, and other professionals in clinical and educational settings, this fourth edition is a definitive introduction to AAC processes, interventions, and technologies that help people best meet their daily communication needs. Future professionals will prepare for their work in the field with critical new information on
advancing literacy skills (new chapter by Janice Light and David McNaughton)
conducting effective, culturally appropriate assessment to determine AAC needs
choosing AAC interventions appropriate for age and ability
selecting AAC vocabulary tailored to individual needs
using new consumer technologies as easy, affordable, and non-stigmatizing communication devices
understanding types of symbols and how individuals use them
promoting social competence
supporting language learning and development
providing effective support to beginning communicators
planning an inclusive education for students with complex communication needs
Readers will get a thorough overview of communication and AAC issues for people with specific developmental disabilities (including cerebral palsy, intellectual disability, and autism) and acquired disabilities (such as aphasia, traumatic brain injury, and degenerative cognitive and linguistic disorders). And with helpful photos, figures, and photocopiable forms, readers will be ready to collect and use important information on assessment, individual communication needs, classroom supports, and more.
An essential core text for tomorrow's professionals—and a key reference for inservice practitioners—this new fourth edition expertly prepares readers to support the communicative competence of children and adults with a wide range of complex needs.

Augmentative and alternative communication (AAC) research and intervention for individuals with severe intellectual disabilities has advanced significantly in the last 5 years. This paper provides an integrated review of the current literature in this area, suggests future research directions, and delineates clinical and educational implications. The integration of behavioral and technological advances in the AAC field provides an optimistic outlook for the future development of functional communication systems for persons with severe intellectual disabilities.

A binary switch based on the detection of periodic vocal cord vibrations is proposed for individuals with multiple and severe disabilities. The system offers three major advantages over existing speech-based access technologies, namely, insensitivity to environment noise, increased robustness against user-generated artifacts such as coughs, and reduced exertion during prolonged usage periods. The proposed system makes use of a dual-axis accelerometer placed noninvasively in proximity of the vocal cords by means of a neckband. Periodic vocal cord vibrations are detected using the normalized cross-correlation function computed from anteriorposterior and superiorinferior accelerometry signals. Experiments with a participant with hypotonic cerebral palsy show the proposed system outperforming a popular commercial sound-based system in terms of sensitivity, task time, and user-perceived exertion. © 2010 IEEE.

OBJECTIVES: People caring for family members who have dementia often experience considerable levels of anxiety and depression. However, relatively little is known about the awareness of carer distress among people with dementia. This study investigated whether or not people with dementia are aware of the level of distress experienced by their carers.
METHOD: Two groups of participants were studied, a dementia group and a control group of people with arthritis. Each group consisted of pairs of people, the person with dementia or arthritis and the family member who acted as their main carer; 40 pairs participated in total. For both groups, the carer's psychological health was rated by the carer themselves and by the care-recipient, using the Hospital Anxiety and Depression Scale. For the dementia group, memory functioning in the person with dementia was rated by the care-recipient themselves and by the carer, using the Memory Function Scale. The ratings made by the carer and care-recipient were compared to give an indication of the level of awareness in the care-recipient.
RESULTS: People with dementia have a significant level of awareness of their carers' state of psychological health. Their awareness follows the same pattern as that shown by a control group of people with arthritis. The level of awareness of carer psychological health shown by the dementia group was not related to their level of awareness of their own memory difficulties.
CONCLUSION: The clinical implications of awareness of carer distress in people with dementia should be considered.

Resultatenhetschefen, som är ansvarig för verksamheten poängterar att anhörigstöd innebär "ett annat synsätt och en annan lyhördhet för en annan problematik", vilket kräver ett visst förhållningssätt. Vikten av att det är samma person som avlöser vid varje tillfälle betonas, eftersom det gör att både den anhörige och den sjuke närstående kan känna sig trygga.

I dagsläget är det tre undersköterskor som arbetar som avlösare. De har fått särskild utbildning i medmänskligt stöd, palliativ vård, stroke och demens. Avlösarteamet har ett möte med anhörigsamordnaren varje vecka och varannan månad får gruppen professionell handledning av en beteendevetare. Samtliga undersköterskor i avlösarteamet framhåller att teamet fungerar mycket bra. De säger till och med att arbetssättet är något de "spånat på flera gånger i livet, just att få jobba i team mot samma mål och nu är man här". De betonar att de vuxit som människor, att de upplever att de kan göra skillnad och att de inte skulle vilja byta tillbaka till hur de arbetade tidigare. Avlösarna understryker att arbetet i avlösarservicen skiljer sig mycket från arbetet i hemtjänsten. I dagsläget har avlösarna sex till åtta hushåll var som de arbetar i, vilket framhålls som maxantalet som de hinner med. Efterfrågan fortsätter emellertid att öka.

Flera av dem som idag har avlösarinsatser i hemmet har inte tidigare haft någon kontakt med den offentliga vården och omsorgen. Avlösarteamet poängterar att de skulle kunna hitta många fler som har behov av den här insatsen, men att ett stort antal av dem som vårdas hemma anses för friska för att den anhörige ska få beviljat anhörigstöd. Detta gör att anhörigstödet inte kan fylla den preventiva funktion som det borde.

De anhöriga har varit uteslutande positiva till avlösarteamet och pekat på omfattande kvalitetsförbättringar i deras enskilda liv. Samtliga anhöriga framhåller att det är ytterst viktigt att det är samma person som kommer och avlöser i hemmet, för att skapa trygghet och kontinuitet för den närstående. För den som är demenssjuk är detta särskilt viktigt.

Det hembesök som görs inledningsvis beskrivs som mycket positivt. De som är berörda får möjlighet att bekanta sig med varandra i hemmiljön, och det skapar förutsättningar för att man ska känna sig trygg med den nya insatsen. Familjen tycker också att det är mycket positivt att det är kommunen som tar kontakt och initierar hembesöket eftersom det många gånger kan vara svårt att ta det steget själv.

Arbetssättet möjliggör såväl flexibilitet och kontinuitet som trygghet och individanpassning. Dessutom görs sannolikt ekonomiska besparingar på lång sikt i och med att en inflyttning på ett heldygnsboende kan skjutas upp, men också genom att anhörigas hälsa och ork bevaras. Det finns ett stort stöd för arbetssättet inom samtliga led i kommunen och i slutet av år 2007 beslutades att avlösarna helt och hållet ska lyftas ur sina ordinarie arbeten för att arbeta i avlösarteamet. Detta kommer att underlätta mycket för såväl avlösarna, som får en tydligare roll och en mer regelbunden arbetssituation, som för de anhöriga, som får lättare att boka tider som passar deras behov. Om avlösarteamet vidareutvecklas till att även fungera som demensteam vid behov görs ytterligare kvalitetsvinster.

Teamet arbetar för närvarande med avlösarservice i 26 hushåll. Finns det tid över prioriteras den efter behov för individuellt stöd, råd och handledning till anhörigvårdaren, utöver den avlösningen om tio timmar/månad. Ambitionen är att ge stödet så tidigt som möjligt för att förebygga ohälsa och öka chansen till bibehållen livskvalitet. Avlösarteamet har också fått tid för reflektion, handledning och dokumentation. Skulle det därutöver finnas tid ger teammedlemmarna lite "guldtid" för de boende på ett av kommunens demensboende.

Under fyra månader vistades Jessica
Holmgren vid tre kommunala äldreboenden
i landet. Resultatet blev en doktorsavhandling
som bland annat visar att
anhöriga betraktas som besökare, och att
det behövs alternativa synsätt både på anhöriga
och delaktighet.

OBJECTIVE:
To compare rates of avoidable mortality in adolescence in child welfare recipients and intercountry adoptees with the general population.
DESIGN:
A register study of the entire national cohort of 989 871 Swedish residents born 1973-82 in the national census of 1990. Multivariate Cox analyses of proportional hazards were used to analyse avoidable deaths between 13 to 27 years of age during 1991-2000.
PARTICIPANTS:
12 240 intercountry adoptees, 6437 foster children, 15 868 subjected to other forms of child welfare interventions, and the remaining 955 326 children in the cohort.
RESULTS:
Intercountry adoptees had a high sex and age adjusted relative risk (RR) for suicide death only (RR 3.5; 95% CI 2.3 to 5.0) in comparison with the general population, while foster children and adolescents who had received other kinds of child welfare interventions had high sex and age adjusted RRs for suicide death; 4.3 (2.8 to 6.6) and 2.7 (1.9 to 3.9) respectively, as well as for other avoidable deaths; RRs 2.5 (1.6 to 3.7) and 2.8 (2.1 to 3.6). The RRs of avoidable deaths for foster children and other child welfare recipients decreased considerably when compared with youth brought up in homes with similar psychosocial characteristics as their original home.
CONCLUSION:
Children in substitute care in early childhood were at particular risk for suicide death in adolescence and young adulthood. Child welfare interventions were insufficient to prevent excess deaths in children at risk.

Purpose: Many Baby Boomers are faced with the care of aging parents, as well as that of disabled or ill spouses or children. This study examines how Baby Boomers in Quebec, Canada, perceive and play their role as caregivers and how this might differ from their parents' generation.

Design and methods: This was a qualitative and empirical study using an interpretive constructivist design. We interviewed 39 Baby Boomers caring for a family member with a semistructured guide that examined respondents' identification with their social generation, their relationship to and values regarding caregiving, and the reality of the caregiving they offered.

Results: In contrast to our perceptions of previous generations, the majority of interviewees refuse to be confined to the sole identity of caregiver, as they work to juggle caregiving, work, family, and social commitments. To succeed in this juggling act, they have high expectations of support from services. Based on this new approach to caregiving, we advance the idea of a "denaturalization" of care, no longer seen as a "natural" destiny or "normal" family responsibility.

Implications: The new conception of caregiving as work that can and should be shared with services is in direct opposition to public policy that is based on the assumption of family care as the cornerstone of long-term care. Can the healthcare system adapt to the new expectations of the Baby Boom generation or will these caregivers be forced to take on elements of caregiving they no longer consider legitimate?

Doktorsavhandling
Den forskning som hittills funnits vad gäller rörelsehindrade barn fokuserar nästan uteslutande på deras situation sett ur de vuxnas perspektiv. Men Lisa Skär tar sin utgångspunkt i att försöka förstå barnens och ungdomarnas värld utifrån deras eget perspektiv.
Det övergripande syftet med avhandlingen är att beskriva hur barn och ungdomar med rörelsehinder själva uppfattar sina roller, relationer och aktiviteter med jämnåriga och vuxna i olika miljöer.
Rörelsehindret i sig och olika miljöers otillgänglighet är två faktorer som försvårade för barnen och ungdomarna att delta i aktiviteter och därmed ha relationer med jämnåriga. Att använda rullstol eller kryckor är både tidskrävande och tar mycket energi av barnen - dessutom fungerar dessa hjälpmedel inte alltid i alla miljöer.
– Barn med rörelsehinder hinner inte alltid eller kan inte vara aktiva deltagare i olika aktiviteter. Samtidigt är det ofta är förutsättningen för att få kamrater, säger Lisa Skär.

När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.

Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.

Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.

Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.

När föräldrar eller andra vuxna i familjen har missbruk, allvarlig sjukdom eller skada, psykisk ohälsa, psykisk funktionsnedsättning, använder våld eller avlider får det konsekvenser för barnen – i större eller mindre grad.

Denna sammanfattning av kunskapsläget syftar till att kortfattat ge ökad kunskap och insikt i barns och ungas situation och behov i familjer med dessa svårigheter.

Syftet är att vidare att belysa varför det är viktigt att anlägga ett familjeperspektiv – både när personal möter barn och unga med olika symtom på psykisk ohälsa och när den möter föräldrar med allvarliga svårigheter. Att uppmärksamma barns behov och ge det stöd som behövs kan både förbättra situationen här och nu och förebygga senare negativa konsekvenser.

Skriften riktar sig till personal inom hälso- och sjukvård, socialtjänst samt förskola och skola.

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

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

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

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

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

OBJECTIVE: The primary objective of this study was to assess the impact of atomoxetine in combination with psychoeducation, compared with placebo and psychoeducation, on health-related quality of life (HRQL) in Swedish stimulant-naïve pediatric patients with attention deficit/hyperactivity disorder (ADHD). HRQL results will be presented elsewhere. Here, psychoeducation as well as efficacy and safety of the treatment are described. PATIENTS AND METHODS: A total of 99 pediatric ADHD patients were randomized to a 10-week double-blind treatment with atomoxetine (49 patients) or placebo (50 patients). Parents of all patients received four sessions of psychoeducation. Atomoxetine was dosed up to approximately 1.2 mg/kg day (< or = 70 kg) or 80 mg/day (> 70 kg). Improvement of ADHD symptoms was evaluated using the ADHD rating scale (ADHD-RS) and clinical global impression (CGI) rating scales. Safety was assessed based on adverse events (AEs). RESULTS: The study population was predominantly male (80.8%) and diagnosed with the combined ADHD subtype (77.8%). The least square mean (lsmean) change from baseline to endpoint in total ADHD-RS score was -19.0 for atomoxetine patients and -6.3 for placebo patients, resulting in an effect size (ES) of 1.3 at endpoint. Treatment response (reduction in ADHD-RS score of > or = 25 or > or = 40%) was achieved in 71.4 or 63.3% of atomoxetine patients and 28.6 or 14.3% of placebo patients. The lsmean change from baseline to endpoint in CGI-Severity was -1.8 in the atomoxetine group compared with -0.3 in the placebo group. The difference between treatments in CGI-Improvement at endpoint was -1.4 in favor of atomoxetine. No serious AEs occurred. The safety profile of atomoxetine was in line with the current label. CONCLUSIONS: Atomoxetine combined with psychoeducation was superior to placebo and psychoeducation in ADHD core symptoms improvement. The large ES might be a result of including stimulant-naïve patients only, but also may indicate a positive interaction between atomoxetine treatment and psychoeducation, possibly by increased compliance.

Objective: This study examined the efficacy of a short-term, camp-based, trauma-focused grief intervention in reducing traumatic grief and posttraumatic stress disorder symptoms in parentally bereaved children. Method: For this nonequivalent comparison group study, 100 children were split into two groups, with one group serving as the immediate treatment group and the second group serving as the delayed treatment group. Results: The results were analyzed using chi-square, independent samples t tests, multiple and logistic regression and showed this short-term intervention to be followed by reduced traumatic grief and posttraumatic stress disorder symptoms. Conclusions: The results are discussed in relation to current research on and practice with bereaved children as well as implications for future research.

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

Depression - en vanlig sjukdom är en grundlig, saklig och lättillgänglig bok den sjukdom som drabbar alltfler människor under något skede i livet. Boken är indelad i tre huvudavsnitt: symtom, orsaker och behandling.

Författaren tar upp hur sjukdomen depression skiljer sig från den helt naturliga nedstämdhet som kan drabba alla då och då. Vidare behandlas ett antal specialteman - t ex årstidsbundna depressioner, förhållandet mellan kön och depressionsbenägenhet, äldre och depression, depression vid missbruk, ätstörningar och sömnproblem.

I avsnittet om orsaker redogörs för olika teorier, både biologiska, sociala och psykologiska förklaringsmodeller, som söker förklara depressionens uppkomst. Boken avslutas med ett omfattande avsnitt om olika aktuella behandlingsvägar. Författaren tar också upp hur man kan hjälpa sig själv vid nedstämdhet samt ger råd till anhöriga. Ett varsamt skrivet sista kapitel behandlar självmord och självmordsförsök i samband med depression.

När Depression - en vanlig sjukdom utkom första gången 1998 blev den mycket uppskattad för det direkta och lättillgängliga tilltalet och den stora respekt för de drabbade som genomsyrar texten. Flera anmälare betonade att boken vänder sig till både yrkesfolk inom vården och till "vanliga" människor - den beskrevs som en verklig bok för alla.

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

Akad. Avh.

Abstract The Individuals with Disabilities Education Act (IDEA) mandates parent-professional
collaboration. But difficulties between parent and professional collaboration seem to persist.
These difficulties do not seem to be related to a lack of mutual respect or lack of good intentions.
Perhaps difficulties exist because of a lack of common ground. Professionals' thinking is
grounded in theory from personnel preparation and on-the-job experiences. Parents' thinking is
grounded in personal experiences and information from professionals, other parents, technology,
and media. This article describes a mother's and father's experiences over the past 25 years in a
variety of settings as the parents of a child with severe disabilities and as special education professionals.
They present their experiences in special education as parents and provide suggestions
for parents and professionals to develop an effective collaborative relationship

Rapporten är ett resultat av ett forskningsprojekt om elever med flera funktionsnedsättningar i särskolan. Projektet belyser hur egenskaper hos barnet, egenskaper i barnets livsmiljöer samt de omgivande servicesystemen, samverkar och påverkar förutsättningar för barnets utveckling

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

Research Challenges in Confronting Depression in Parents

The challenges for researchers, clinicians, and policy makers in attempting to address the problems associated with the care of depression in parents include the integration of knowledge, the application of a developmental framework, conceptualizing the problems in a two-generation nature, and acknowledging the presence of the constellation of risk factors, context, and correlates associated with depression.
Issues Considered in Searching the Literature

To fully understand the linkages among depression, parenting, and the child health outcomes, researchers should consider issues surrounding (but not limited to) the definition and measurement of depression and parenting, the etiology of depression, timing and use of appropriate screening interventions, the process of risk and resilience in children of depressed parents, correlates of depression, and developmental processes and time points.
Challenges in Evaluating the Literature

Researchers face multiple methodological challenges studying depression in parents and its effects on parenting practices and child health outcomes that need to be addressed in order to provide recommendations for the development of future research, interventions, and policy—including conceptual frameworks, sampling designs, data analysis, and integration of research findings across literatures.
In this chapter, the committee describes their approach to the literature on the effects of parental depression on parenting practices and child outcomes and its evaluation. The chapter is organized in three sections, relating to the challenges that researchers face in confronting the problem of parental depression, the wide range of issues that we considered relevant, and standards of evidence and methodological issues that are important to keep in mind in reading this report. Some topics are addressed in more than one section, but they are focused on different aspects of the topic. For example, in the section on research challenges, we show that a conceptual framework relating to the effects of parental depression on families should be guided by a developmental psychopathology perspective. Later, in the section on research standards, we mention what the literature has shown in this regard and that research relating to any psychopathology should address questions "across generations and across time" (Hinshaw, 2008).

The type of evidence and criteria used to judge the importance of that evidence vary from area to area. This chapter does not attempt to explicitly summarize the specific criteria used for the evaluation of the evidence in each area, but instead offers a guideline of the general areas of interest and inquiry that the committee used when the committee searched and evaluated the literature. For example, studies of screening for parental depression are different from studies of treatment and intervention, and these are different from studies of prevention programs. These are also different from inquiries relating to changes in policy at the macro level or the available studies on the effects of parental depression. Thus, in this overview on standards of evidence and methodology, we present general guidelines that the reader should apply when appropriate in the subsequent chapters. Recommendations based on the evaluation of the evidence in each area are presented.

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

In this landmark work, Richard Lazarus -- one of the world's foremost authorities -- offers a comprehensive treatment of the psychology of emotion, its role in adaptation, and the issues that must be addressed to understand it. The work provides a complete theory of emotional processes, explaining how different emotions are elicited and expressed, and how the emotional range of individuals develops over their lifetime. The author's approach puts emotion in a central role as a complex, patterned, organic reaction to both daily events and long-term efforts on the part of the individual to survive, flourish, and achieve. In his view, emotions cannot be divorced from other functions--whether biological, social, or cognitive--and express the intimate, personal meaning of what individuals experience. As coping and adapting processes, they are seen as part of the ongoing effort to monitor changes, stimuli, and stresses arising from the environment. After defining emotion and discussing issues of classification and measurement, Lazarus turns to the topics of motivation, cognition, and causality as key concepts in this theory. Next he looks at individual emotions, both negative and positive, and examines their development in terms of social influences and individual events. Finally, he considers the long-term consequences of emotion on physical health and well-being, and the treatment and prevention of emotional dysfunction. The book draws together the relevant research from a wide variety of sources, and distills the author's pioneering work in the field over the last forty years. As a comprehensive treatment of the emotions, the book will interest students, clinicians, and researchers involved in personality, social and clinical psychology, as well as cognitive and developmental psychology. It may also be used as a supplemental textbook in courses on the psychology of adjustment, emotion, and feeling.

Abstract
Adverse childhood events can influence the development of emotional and physiological self-regulatory abilities, with significant consequences for vulnerability to psychological and physical illness. This study evaluated stress sensitization and inoculation models of the impact of early parental death on stress exposure and reactivity in late adolescence/young adulthood. Ambulatory blood pressure (BP) and diary reports of minor stress were collected every 30 min during waking hours over a 24-hr period from 91 late adolescents/young adults (43 early bereaved, 48 nonbereaved). Across the sample, minor stressors were associated with elevated BP and negative affect. The bereaved group had lower BP than did the nonbereaved group. Within the bereaved group, higher perceived caring from the surviving parent was associated with fewer reports of minor stress and lower stress-related negative affect. Higher perceived parental caring during childhood was associated with lower BP across the sample and more frequent hassles in the nonbereaved group. Findings support both the stress inoculation and sensitization models, suggesting that childhood parental loss and parental caring exert important influences on children's development of stress sensitivity.

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

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

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

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

Avhandling

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

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.

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

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

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

Syftet med denna rapport är att belysa hur barn med cerebral pares mellan
tio och sjutton år upplever sina möjligheter att påverka stödinsatser och
behandlingsmetoder som de erhåller från olika institutioner samt att öka
kunskaperna om deras unika situation. Det innebär att intresset fokuserar på
barnens upplevelser och erfarenheter av habilitering, skola och fritid. Dessa
barns vardag skiljer sig i många avseenden från andra barns vardag.
Metoden som använts är intervjuer med barnen men jag har även talat med
föräldrarna. Med hjälp av barnhabiliteringen vid Kärnsjukhuset i Skövde,
Handikappförvaltningen i Järfälla kommun samt Mullback Institutet i
Karlsborg, har jag fått kontakt med familjerna. De har tillfrågat familjerna
om intresse att delta. De flesta intervjuer har genomförts i barnens hem, en
på ett fritidshem samt två på Mullback Institutet.
Resultatet visade att barnen är relativt nöjda och tycker det mesta fungerar
bra. Det som ibland är problem är kamratkontakterna i skolan och på
fritiden. Många barn känner sig ensamma och isolerade. Föräldrarna anser
att deras barn är i behov av mer träning via habiliteringen och betonar att
kamratkontakterna är ett större problem än vad barnen ibland vill erkänna.

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

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

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

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

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

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

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

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

BACKGROUND AND PURPOSE: We examined longitudinal changes of quality of life (QOL) covering physical and mental factors in an unselected group of stroke patients and their informal caregivers. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be related to the patients' status. METHODS: QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients. RESULTS: The patients' mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients' most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers' most important determinants of QOL were their own age and the patients' functional status. CONCLUSIONS: Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotional-mental scores.

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

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

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

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

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

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

Family caregivers of people with bipolar disorder experience a range of difficulties in understanding and coping with the impact of the disorder. The Family Support Team at the Princess Alexandra Hospital in Brisbane, Queensland, developed an educational supportive program for families of people with bipolar disorder that sought to improve caregiver knowledge of the illness, reduce caregiver distress, and enhance caregiver coping. The program also sought to moderate caregiver attributions of patient behavior in order to build an illness perspective of behavior. The bipolar program was developed, trialed, and evaluated. Analysis of results shows encouraging improvements for some families in knowledge, distress, attributions, and ways of coping. Practice and research implications include identifying differences with the schizophrenia program, the importance of a problem-solving focus, maintaining a balance between information giving and support, and timing of the intervention.

Complex interventions are widely used in the health service, in public health practice, and in areas of social policy that have important health consequences, such as education, transport, and housing. They present various problems for evaluators, in addition to the practical and methodological difficulties that any successful evaluation must overcome. In 2000, the Medical Research Council (MRC) published a framework1 to help researchers and research funders to recognise and adopt appropriate methods. The framework has been highly influential, and the accompanying BMJ paper is widely cited.2 However, much valuable experience has since accumulated of both conventional and more innovative methods. This has now been incorporated in comprehensively revised and updated guidance recently released by the MRC (www.mrc.ac.uk/complexinterventionsguidance). In this article we summarise the issues that prompted the revision and the key messages of the new guidance.

The aim of key working is to ensure the provision of holistic care and support to meet the individual requirements and aspirations of the child, young person and their family. The governement-funded Early Support programme, which ran until 2015, provided a range of key working training and resources includoing these guide's on delivering key working in practice.

The guide summarises key evidence and consistent elements of a key working approach, including an analysis of the implications of key working that cuts across health, social care and education.

This report presents the current status of a series of studies oriented toward the assessment of perceived life quality. The conceptual model proposes that a person's overall sense of life quality is understandable as a combination of affective responses to life 'domains', which are of two types-role situations and values. Over 100 items used to measure a wide variety of domains and 28 items assessing perceived overall life quality are presented. Various subsets of these items were used in interviews with several representative samples of American adults. Based on these data the domain items were grouped into a smaller number of semi-independent clusters which were internally stable across 10 different subgroups of the respondents and whose interrelationships were highly replicable in independent national samples. A series of analyses, some replicated in more than one survey showed: (1) an additive combination of 12 selected domains explained 50–60% of the variance in an index of overall life quality, (2) neither other domains nor several social characteristic variables contributed additional explanatory power, (3) this level of explanation was achieved in each of 22 subgroups of the population, and (4) additive combinations of domains worked as well as more complicated combinations.

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.

Acknowledgments
This research was supported by Grants P01 HD018955 and R01 DC007684 from the National Institutes of Health. We wish to thank Kris Mathews, Megan Burgardt, and the individuals who participated in this research and their families.
PurposeAccurate description of an individual's communication status is critical in both research and practice. Describing the communication status of individuals with severe intellectual and developmental disabilities is difficult because these individuals often communicate with presymbolic means that may not be readily recognized. Our goal was to design a communication scale and summary score for interpretation that could be applied across populations of children and adults with limited (often presymbolic) communication forms.

MethodThe Communication Complexity Scale (CCS) was developed by a team of researchers and tested with 178 participants with varying levels of presymbolic and early symbolic communication skills. Correlations between standardized and informant measures were completed, and expert opinions were obtained regarding the CCS.

ResultsCCS scores were within expected ranges for the populations studied, and interrater reliability was high. Comparison across other measures indicated significant correlations with standardized tests of language. Scores on informant report measures tended to place children at higher levels of communication. Expert opinions generally favored the development of the CCS.

ConclusionsThe scale appears to be useful for describing a given individual's level of presymbolic or early symbolic communication. Further research is needed to determine whether it is sensitive to developmental growth in communication.

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure − Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities.
Implications for Rehabilitation
As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure.
A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities.
The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

Intimate Partner Violence (IPV) is a prevalent social problem in the United States and women of childbearing age are the most likely victims. The young children born to these women are impacted, however, women are not routinely asked about IPV even when there is evidence that their child has been abused. To highlight the importance of routinely screening for IPV in child welfare and other social service agencies this article reviews typical social-emotional development and physiological/neurological development in early childhood and the impact that IPV and trauma have on these domains of development. Early intervention with young children and caregivers living with IPV provides a significant buffer to the negative effects that witnessing IPV have on children's development and their relationships with caregivers.

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

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

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

This new edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5®), used by clinicians and researchers to diagnose and classify mental disorders, is the product of more than 10 years of effort by hundreds of international experts in all aspects of mental health. Their dedication and hard work have yielded an authoritative volume that defines and classifies mental disorders in order to improve diagnoses, treatment, and research.

The criteria are concise and explicit, intended to facilitate an objective assessment of symptom presentations in a variety of clinical settings—inpatient, outpatient, partial hospital, consultation-liaison, clinical, private practice, and primary care. New features and enhancements make DSM-5® easier to use across all settings:

The chapter organization reflects a lifespan approach, with disorders typically diagnosed in childhood (such as neurodevelopmental disorders) at the beginning of the manual, and those more typical of older adults (such as neurocognitive disorders) placed at the end. Also included are age-related factors specific to diagnosis.
The latest findings in neuroimaging and genetics have been integrated into each disorder along with gender and cultural considerations.
The revised organizational structure recognizes symptoms that span multiple diagnostic categories, providing new clinical insight in diagnosis.
Specific criteria have been streamlined, consolidated, or clarified to be consistent with clinical practice (including the consolidation of autism disorder, Asperger's syndrome, and pervasive developmental disorder into autism spectrum disorder, the streamlined classification of bipolar and depressive disorders, the restructuring of substance use disorders for consistency and clarity, and the enhanced specificity for major and mild neurocognitive disorders).
Dimensional assessments for research and validation of clinical results have been provided.
Both ICD-9-CM and ICD-10-CM codes are included for each disorder, and the organizational structure is consistent with the new ICD-11 in development.
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, is the most comprehensive, current, and critical resource for clinical practice available to today's mental health clinicians and researchers of all orientations. The information contained in the manual is also valuable to other physicians and health professionals, including psychologists, counselors, nurses, and occupational and rehabilitation therapists, as well as social workers and forensic and legal specialists.

The overall aim of this thesis is to 1) investigate the prevalence of stigmatizing experiences and beliefs of devaluation and discrimination among persons with mental illness, and 2) to investigate the relationship between beliefs of devalua¬tion/¬discrimination, rejection experiences and sociodemographic/clinical patient characteristics, social networks, self esteem, empowerment and subjective quality of life. The thesis comprises four papers. Part one of the study was designed as a cross-sectional study using a convenience sample of 200 consumers in current contact with mental health services or with earlier experiences of this. In order to reach subjects with different experiences of mental illness recruitment were made at inpatient and outpatient settings, rehabilitation units and among members of user organizations. This part of the study is presented in paper I-III. In the second part of the study 25 mental health user's who participated in the cross-sectional study were interviewed with regard to experiences of rejection related to their mental illness

Christopher Gillberg är upphovsman till ESSENCE, Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations. Det är ett paraplybegrepp som betonar den stora överlappningen mellan utvecklingsneurologiska/neuropsykiatriska störningar som alltför ofta betecknas som avgränsade tillstånd till exempel adhd, autism, DCD. Minst tio procent av alla barn under 18 år har eller har haft någon eller flera av dessa problemtyper/diagnoser.

Poängen med att utgå från ESSENCE-begreppet är att det kan bidra till tidig upptäckt och förståelse för barnets hela fungerande inte bara en diagnos. Barn kan ha svårigheter med motorkoordination, sensorisk perception, kommunikation/språk, aktivitet/impulsivitet, uppmärksamhet, social interaktion/ömsesidighet samt sömn och mat. Med anpassade och tidiga insatser kan vi hjälpa barnen och förebygga problem i vuxen ålder.

BACKGROUND: Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential. OBJECTIVES: This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia. METHODS: A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support. RESULTS: For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners' aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner's level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men. CONCLUSIONS: Differences in caregivers' needs for social support were related to their partner's disease. IMPLICATIONS FOR PRACTICE: Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care.

OBJECTIVE:
This article discusses the use of a third qualifier, subjective experience of involvement, as a supplement to the qualifiers of capacity and performance, to anchor activity and participation as separate endpoints on a continuum of actions.
DESIGN:
Empirical data from correlational studies were used for secondary analyses. The analyses were focused on the conceptual roots of the participation construct as indicated by the focus of policy documents, the support for a third qualifier as indicated by correlational data, differences between self-ratings and ratings by others in measuring subjective experience of involvement, and the empirical support for a split between activity and participation in different domains of the activity and participation component.
RESULTS:
Participation seems to have two conceptual roots, one sociologic and one psychologic. The correlational pattern between the qualifiers of capacity, performance, and subjective experience of involvement indicates a possible split between activity and participation. Self-ratings of participation provide information not obtained through ratings by others, and later domains in the activities and participation component fit better with measures of experienced involvement than earlier domains did.
CONCLUSIONS:
The results from secondary analyses provide preliminary support for the use of a third qualifier measuring subjective experience of involvement to facilitate the split between activity and participation in the International Classification of Functioning, Disability and Health, Children and Youth version, activity and participation domain.

Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.

For rehabilitation and disability research, participation and environment are 2 crucial constructs that have been placed center stage by the International Classification of Functioning, Disability and Health (ICF). However, neither construct is adequately conceptualized by the ICF, and both are difficult to measure. This article addresses conceptual and methodologic issues related to these ICF constructs, and recommends an improved distinction between activities and participation, as well as elaboration of environment. A division of the combined ICF categories for activity and participation into 2 separate taxonomies is proposed to guide future research. The issue of measuring participation from objective and subjective perspectives is examined, and maintaining these distinct conceptual domains in the measurement of participation is recommended. The methodological issues contributing to the difficulty of measuring participation are discussed, including potential dimensionality, alternative metrics, and the appropriateness of various measurement models. For environment, the need for theory to focus research on those aspects of the environment that interact with individuals' impairments and functional limitations in affecting activities and participation is discussed, along with potential measurement models for those aspects. The limitations resulting from reliance on research participants as reporters on their own environment are set forth. Addressing these conceptual and methodological issues is required before the measurement of participation and environmental factors can advance and these important constructs can be used more effectively in rehabilitation and disability observational research and trials.

The discussion of a palliative care and a dignified death has almost exclusively been applied to people dying of cancer. As people are getting older and are living longer, nursing homes have become an important place for end-of-life care and death. Dignity is a concept often used in health care documents but their meaning is rarely clarified.The main aim of this thesis was to gain a deeper understanding of what dignity meant to older people in end of life care as well as to nursing home staff. The thesis comprises four studies. The first and second study involved older people living in nursing home settings studied from a hermeneutic perspective. In the first study twelve older people in two nursing homes were interviewed two to four times over a period of 18–24 months during 2002–2003. Altogether, 39 interviews were analyzed by a hermeneutic method. Dignity was closely linked to self-image and identity. The themes of unrecognizable body, dependence and fragility constituted threats to dignity. The third theme, inner strength and sense of coherence, seemed to assist the older people in maintaining dignity of identity. In the second study the aim was to acquire a deeper understanding of how three older women from study I, created meaning in everyday life at the nursing home. A secondary analysis was carried out and showed meaning in everyday life was created by an inner dialogue, communication and relationships with others. The third study was to explore nursing home staff members' experience of what dignity in end-of –life care means to older people and to themselves.Totally 21 interviews with staff were carried out and analyzed through a qualitative content analysis. The meaning of older people's dignity was conceptualized as feeling trust, which implied being shown respect. Staff members' dignity was conceptualized as maintaining self-respect. Dignity was threatened in situations where staff experienced themselves and the older people as being ignored and thereby marginalized. The fourth study was carried out through focus groups discussions with 20 staff members about seven older peoples dying death and care. The analyses showed that conversations and discussions about death were rare. Death was surrounded by silence. It was disclosed that the older dying person's thoughts and attitudes of death were not explicitly known. A dignified death meant alleviation of bodily suffering and pain and meaningfulness. The staff's ethical reasoning mainly concerned their experience of a gap between their personal ideals of what a dignified end of life should include and what they were able to provide in reality, which could result in conscious stress. Staff members need training and support. End of life care demands competence and teamwork.A challenge for future care of older people would be to develop a nursing home environment in which human dignity is promoted.

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

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

Kommuner & landsting

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

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

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

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

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

The aim of this study was to describe and understand parents' perspectives in aid assessment for children according to The Swedish Act (1993:387) concerning Support and Service for Persons with Certain Functional Impairments (Lag 1993:387 om stöd och service till vissa funktionshindrade, LSS). The study took place in the county of Kronoberg, Sweden, and was based on a total of nine qualitative interviews. Four interviews were made with parents' of children who has interventions according to LSS (1993:387) and five interviews were made with LSS case workers. In our study we saw that parents' perspectives often is the largest amount of information that case workers take into account when assessing aid and as a case worker you listen to the parents perspectives to capture the child's and the family's needs. It also came clear that the parents' perspective is not only about the child's needs, but also includes the parent's own needs and their family's needs. The parents in the study felt that they made the decision about the choice of aid and considered themselves as the one who decides the family's requirements. It turned out that treatment and understanding from the case workers was important for gaining access to the best help and making parents feel listened to. Parental responsibility was of great importance for the assessment, and it often led to disagreement between parents and case workers. During the study, we saw that power existed in the relationship between case workers and parents, but that it could be moved and changed during the time of aid assessment.

Denna bok belyser några centrala frågor i den handikappolitiska utvecklingen under de senaste åren. Vad var det som dolde sig bakom de goda intentionerna och strävan efter välfärd för personer med funktionshinder? Klienter och patienter är inte längre nöjda med enbart anonym planläggning utan vill själva bestämma över sina liv. Ett genomgående tema i boken är därför att lyfta fram och belysa handikappolitikens konsekvenser ur de funktionshindrade personernas eget perspektiv.
Boken vill ge några bilder av funktionshindrade personers levnadsförhållanden och hur deras möte med den offentliga vården och omsorgen ser ut. Den visar på gränser och möjligheter i dagens handikappolitik och hur den i praktiken verkställs. Svensk handikappomsorg är bra men det finns också samtidigt en praktisk vardag som inte alltid stämmer med lagarnas bild av möjligheter och rättigheter. Bakgrunden till boken är främst handikappreformen från 1994, men även psykiatrireformen ett år senare.
Boken är i första hand tänkt för undervisning inom högskolans sociala utbildningar och vårdutbildningar. Boken vänder sig också till verksamhetspersonal, handläggare och beslutsfattare, liksom till anhöriga och funktionshindrade personer.
Mer information om våra bokserier och övriga böcker inom ämnesområdet finns på webbplatsen Handikapp och funktionshinder.

Efter 9 månaders sjukskrivning och en lång väntan och oro har mina allra värsta farhågor bekräftats. Min man har Alzheimers sjukdom! Han är bara 62 år och vi skulle njuta av livet, barnen och barnbarnen tillsammans. Ville helst bara sätta mig någonstans för mig själv och gråta ut. Hur ska vårt liv bli? Min man är samlad och försöker vara stark. Vet inte om han har tagit in beskedet riktigt fullt ut ännu. Hur tänker han och vad kommer att hända med honom? Mardrömmen som jag känt närvaro av under ett par års tid har nu kommit och knackat på vår dörr. Jag har i grunden en positiv inställning till det mesta och har oftast förlitat mig på att jag har förmågan att hitta lösningar på olika problem som uppstått i såväl arbetslivet som privatlivet. Min livsfilosofi att det mesta kommer att gå bra har alltid gett mig tillförsikt till framtiden och hur livet skulle utveckla sig. Den 17 september 2007 blev jag ordentligt omskakad i min livsfilosofi och en avgrund öppnades framför mig.

Avhandling för doktorsexamen

The aim of this thesis is to describe and analyse how the natural children of foster carers experience growing up in a foster family. The intention was to gain knowledge about their everyday life through their own participation, and to make the research questions derive from their experiences. The Swedish research project "Growing Up With Foster Siblings" built on empirical material collected via focus groups (17 participants), discussion groups (16 partici- pants), a (web and postal) questionnaire (684 answers) and 8 qualitative interviews. The study follows the sociology of childhood and the young people are considered as social actors participating in interactions, activities and negotiations, which contribute to the construction of their social world. Children's competences as well as their constraints are explored. When a family becomes a foster family the whole family is affected, not in the least the natural children, who often take an active part in the fostering assignment. The young people's experiences vary to a great extent. Some describe their relationships with their foster siblings as an ordinary sibling relationship or as being friends. Some take responsibility and care for both their foster siblings wellbeing as well as for their parent's wellbeing. Several of them describe how they reflexively mould their own part in the interaction by focusing on the needs of other family members. A third of the young people in the study experiences a loss of time and attention from their parents. This theme has brought the analysis to the question of how the young people experience their position in the family. In the young people's descriptions it is noticeable how important the feeling of being able to affect their own situation, of being an actor, is. The young persons who have negative experiences (in groups and individual interviews mostly girls/women) have often described themselves as powerless, with no possibility of negotiating and affecting their situation. Many of the young people describe themselves as active and involved in processes through which relationships in the family are formed. There is no consensus as to their construction of how a child in a certain age should engage in caring activities. The young people are involved and implicated in processes that are complex and full of ambiguity. In line with theories of late modern society where sources of authority are localised within the individual and to negotiating processes, the children seem to be of the opinion that they are active agents who themselves decide what to take responsibility for or not. But they do this in a context. They live within a context where they are expected to behave according to certain conceptions of in what way a natural child to a parent who foster should act in relation to their foster siblings but also towards their parents. Expectations interlock with the active child who engages in processes through which social relationships are formed in the family.

Syftet med boken är i första hand att belysa vad som kan hända anhörig och patient vid långvariga sjukhusvistelser. I boken belyses hur det kan gå till i verkligheten, något man kanske inte hinner uppmärksamma vid kortare vistelser.

Texten är skriven ur ett personligt och kritiskt perspektiv. Den belyser fritt ur hjärtat vad jag som anhörig, tänkt och känt i situationer som skakat om mig. Det är också häpnadsväckande hur inblandade tagit för givet att en anhörig automatiskt blir anhörigvårdare utan samtal om vad det kan innebära och vilka rättigheter man har.

Genom att jag skrivit detta har jag kanske mildrat min egen sorg och även distanserat mig en aning från mitt eget ångestfyllda öde.

Det har tagit tid att skriva den här boken. Av olika anledningar har jag varit tvungen att ta pauser för att återhämta mig psykiskt och fysiskt samt att förkovra mig ämnesmässigt. Under långa perioder infann sig inte heller den nödvändiga tid som behövdes för att fortsätta skrivandet.

Boken vänder sig till utbildningar på högskole-, universitets- och gymnasienivå. Den är också viktig för sjukhuspersonal, personal på geriatriska avdelningar, kommunala och privata hemtjänstföretag samt anhöriga och andra intresserade.

One older patient out of ten develops an acute confusional state (ACS) during their stay at an emergency care hospital, but there is little knowledge about encountering patients in an ACS. The overall aim of this thesis was to describe the complexity within the encounter between older patients in an ACS and relatives or professional carers, to gain a deeper understanding and increased knowledge about what takes place in the encounter and how this is experienced. The thesis is grounded in a qualitative research approach and a lifeworld perspective. Four empirical studies have been conducted at two geriatric wards at an emergency care hospital. The studies have been examined and approved by the Regional Board of Research Ethics. The aim of study I, II and III was to increase knowledge about how the encounter is experienced in retrospect, by interviewing professional carers (I), relatives (II) and patients who had suffered an ACS (III) about their experiences of encounters during the period of the patient being in an ACS. The fourth study (IV) aimed at increasing knowledge about the encounter from the viewpoint of the patient by focusing on dialogue and actions in the framework of the encounter with professional carers and relatives using a case study. A phenomenological approach was used for gathering and analysing data in studies I and II. In studies III and IV a latent content analysis was used for data analysis.
The results from study I show that professional carers experience the encounter with the patient as an encounter with a person, whose actions and words are unfamiliar and give rise to a lack of immediate trust. The encounter is experienced as unpredictable and the professional carers experience a need to always be on guard and use themselves as tools to reach out to, understand and create contact with the patient in the encounter. Relatives (II) experience the encounter with the patient as encountering a familiar person who has rapidly become unfamiliar, experiencing insecurity in how the patient in turn experiences the encounter and will react to the relative s words and actions. The relatives have to face this new situation with feelings of insecurity and sadness, find themselves exposed and the whole situation laborious. The patients (III) experience the encounter with professional carers and relatives as representing difficulties in connecting with and understanding the other. The patients experience difficulties in understanding what is happening and search for answers within themselves and from others. But the patients also experience a mutual understanding and trust between themselves and the other participants. The patients in the fourth study (IV) rely on professional carers and relatives to understand what is happening and why, to receive help in the encounter and are acknowledged with both understanding and suspicion. In the encounter each tries to convince the other about what is right, which reality is the true one, and there are often misunderstandings in time, place and foci.
The conclusion of the studies (I-IV) is that the professional carers, relatives and patients experience the encounter as something that places them in a vulnerable and arduous situation. In the encounter the feelings of lack of understanding, lack of trust and insecurity are mutual, but there is also a mutual wish to reach out to and understand the other. The character of the encounter changes frequently and rapidly and it is as if it takes place a split second at a time.

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

Aims.  To describe relatives' perceived participation in discharge planning for patients with stroke and identify correlates to perceived participation.

Background.  Stroke affects both patients and their relatives and previous research shows that relatives were often dissatisfied with their perceived involvement in discharge planning and the information they get.

Design.  Prospective cross-sectional study.

Methods.  The study comprised 152 consecutively enrolled relatives (mean age = 60·8 years) of acute stroke patients admitted to a stroke unit in southern Sweden during 2003–2005. Data were collected through interviews 2–3 weeks after discharge using 'Relative's Questionnaire about Participation in Discharge planning'. This instrument measures perceived participation in three subscales: R–Information–Illness, R–Information–Care/support, and R–Goals and Needs. The Overall Rating of Relative's Perceived Participation in Discharge Planning was measured by a visual analogue scale (VAS) (1–10 score).

Results.  Among the relatives, 56–68% reported positively according to R–Information–Illness, but 46–53% perceived that they did not receive any information about care/medication/rehabilitation/support. About 80% perceived no participation at all in goals and needs. The mean value of the VAS was 3·89 (SD 3·40) score. Regression analyses revealed that longer stay at hospital, patients with higher education, and relatives of female patients and female relatives were associated with relatives' perceptions of higher participation in discharge planning.

Conclusions.  Relatives perceived that they needed more information and knowledge about stroke and care/medication/rehabilitation/support. They also needed to be more involved in goal-setting and in identifying patient needs. Professionals should take into consideration these associated variables to improve relatives' perceived participation.

Relevance to clinical practice.  Clinicians should give more attention to the altered situation of stroke patients' relatives when planning for continuing care and when setting postdischarge goals for the patients. The professionals need to develop strategies to involve relatives in sharing information, goal-setting and needs assessment in discharge planning.

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

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

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

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

A rich and full exploration of the myriad of instances where a mourner is deprived of the catharsis shared grief brings. Provides numerous interventions designed to help patients recognize and explore their loss, and find meaningful and appropriate ways to resolve their grief.

I denna rapport redovisas den första delen av regeringsuppdraget om diskriminering. Den omfattar en undersökning om barns, elevers och studerandes uppfattningar om och upplevelser av situationer där diskriminering och trakasserier förekommer i förskolan, grundskolan, obligatoriska särskolan, gymnasiesärskolan, särvux och gymnasieskolan samt i den kommunala vuxenutbildningen/SFI. De övriga delarna i detta regeringsuppdrag finns redovisade dels i Skolverkets rapport "Tillgänglighet till skolors lokaler och valfrihet för elever med funktionsnedsättning", dels i Skolverkets rapport "Barn- och elevskyddslagen i praktiken. Förskolors, skolors och vuxenutbildningens tillämpning av lagen"

During the past 10 years nearly 80 studies on disorganized attachment involving more than 6,000 infant-parent dyads have been carried out. The current series of meta-analyses have established the reliability and discriminant validity of disorganized infant attachment. Although disorganized attachment behavior is necessarily difficult to observe and often subtle, many researchers have managed to become reliable coders. Furthermore, disorganized attachment shows modest short- and long-term stability, in particular in middle class environments, and it is not just a concomitant of constitutional, temperamental, or physical child problems. The predictive validity of disorganized attachment is established in terms of problematic stress management, the elevated risk of externalizing problem behavior, and even the tendency of disorganized infants to show dissociative behavior later in life. In normal, middle class families, about 15% of the infants develop disorganized attachment behavior. In other social contexts and in clinical groups this percentage may become twice or even three times higher (e.g., in the case of maltreatment). Although the importance of disorganized attachment for developmental psychopathology is evident, the search for the mechanisms leading to disorganization has just started. Frightening parental behavior may play an important role but it does not seem to be the only causal factor involved in the emergence of disorganized attachment.

Infant disorganized attachment is a major risk factor for problematic stress management and later problem behavior. Can the emergence of attachment disorganization be prevented? The current narrative review and quantitative meta-analysis involves 15 preventive interventions (N = 842) that included infant disorganized attachment as an outcome measure. The effectiveness of the interventions ranged from negative to positive, with an overall effect size of d = 0.05 (ns). Effective interventions started after 6 months of the infant's age (d = 0.23). Interventions that focused on sensitivity only were significantly more effective in reducing attachment disorganization (d = 0.24) than interventions that (also) focused on support and parent's mental representations (d = −0.04). Most sample characteristics were not associated with differences in effect sizes, but studies with children at risk were more successful (d = 0.29) than studies with at-risk parents (d = −0.10), and studies on samples with higher percentages of disorganized attachment in the control groups were more effective (d = 0.31) than studies with lower percentages of disorganized children in the control group (d = −0.18). The meta-analysis shows that disorganized attachments may change as a side effect of sensitivity-focused interventions, but it also illustrates the need for interventions specifically focusing on the prevention of disorganization.

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

This review concluded that disorganised infant attachment could be affected by sensitivity-focused interventions, but interventions specifically designed to prevent disorganised attachment were needed. These conclusions reflect the evidence presented, but they may not be reliable in view of the limitations in the review process and the unknown quality of the included studies.

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

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

Limited information is available on the long-term effects of providing care for adults when caregiving begins in childhood in the United States. The current study provided an examination of the effects of youthful caregiving on the mental health of these persons when adults, and provided a description of their early family relations. Twenty-four individuals, 21 to 58 years old, were given brief phone interviews with semistructured questions about their early caregiving experiences, and then they completed questionnaires on their early caregiving experiences, mental health, and early parent–child relations. To be included, respondents must have provided primary caregiving assistance (i.e., bathing, feeding, etc.) for a parent or adult relative when the caregiver was under 21 years old. Results showed that the sample reported more positive mental health than negative mental health, though 42% had high depressive scores on the total CES-D. Individuals who reported fathers as too protective reported less current positive mental health. Early caregiving is not associated with poor mental health in adulthood for many young caregivers. However, some individuals do appear at risk of depression in adulthood.

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

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

Abstract

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

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

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

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

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

The clinical significance of a parent management training that is part of the Prevention Program for Externalizing Problem Behavior (PEP) was assessed in an effectiveness trial. Parent management training was offered under routine care conditions in a setting where a high proportion of children were expected to show clinically relevant symptoms of externalizing problem behavior. At the beginning of the study, 32.6% to 60.7% of children were classified as clinical cases (dysfunctional) on three outcome measures of child behavior problems. Three months after treatment, 24.8% to 60.4% of children were judged to be recovered. Parent management training can result in clinically significant changes in children with externalizing behavior problems.

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

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

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

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

This practical handbook offers treatment guidelines to address the behavioral and mental health problems of young children whose most intimate relationships are disrupted by the experience of violence. Practitioners from a variety of disciplines will gain an understanding of the impact of violence and will discover concrete intervention strategies to address the consequences of this experience for young children.

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

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

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

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

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

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

Akademisk Avhandling

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

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

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

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

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

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

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

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

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

Background: Changes in cognition caused by dementia can significantly alter how a person perceives familiarity, impacting the recognition and usability of everyday products. A person who is unable to use products cannot autonomously complete associated activities, resulting in increased dependence on a caregiver and potential move to assisted living facilities. The research presented in this paper hypothesised that products that are more familiar will result in better usability for older adults with dementia. Better product usability could, in turn, potentially support independence and autonomy. Methods: This research investigated the impact of familiarity on the use of five faucet designs during 1309 handwashing trials by 27 older adults, who ranged from cognitively intact to the advanced (severe) stages of dementia. Human factors methods were used to collect empirical and self-reported data to gauge faucets' usability. Participants' data were grouped according to cognition (i.e., no/mild, moderate, or severe dementia). Logistic regression, ranking by odds, and Wald tests of odds ratios were used to compare performance of the three groups on the different faucets. Qualitative data were used in the interpretation of quantitative results. Results: Results indicated that more familiar faucets correlated with lower levels of assistance from a caregiver, fewer operational errors, and greater levels of operator satisfaction. Aspects such as the ability to control water temperature and flow as well as pleasing aesthetics appeared to positively impact participants' acceptance of a faucet. The dual lever design achieved the best overall usability. Conclusions: While work must be done to expand these findings to other products and tasks, this research provides evidence that familiarity plays a substantial role in product usability for older adults that appears to become more influential as dementia progresses. The methods used in this research could be adapted to analyse usability for other products by older adults with dementia.

Executive functions (EFs) make possible mentally playing with ideas; taking the time to think before acting; meeting novel, unanticipated challenges; resisting temptations; and staying focused. Core EFs are inhibition [response inhibition (self-control--resisting temptations and resisting acting impulsively) and interference control (selective attention and cognitive inhibition)], working memory, and cognitive flexibility (including creatively thinking "outside the box," seeing anything from different perspectives, and quickly and flexibly adapting to changed circumstances). The developmental progression and representative measures of each are discussed. Controversies are addressed (e.g., the relation between EFs and fluid intelligence, self-regulation, executive attention, and effortful control, and the relation between working memory and inhibition and attention). The importance of social, emotional, and physical health for cognitive health is discussed because stress, lack of sleep, loneliness, or lack of exercise each impair EFs. That EFs are trainable and can be improved with practice is addressed, including diverse methods tried thus far.

Avhandling
Svenska

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

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

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

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

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.

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

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

AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia.
BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective.
METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective.
RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed.
CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns.
IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers

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

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

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

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

Parents of 22 patients diagnosed with schizophrenia, and receiving care in a secure forensic setting, were interviewed to elicit their views on the causes of the disorder, the emotional burden and the helpfulness of others when seeking support. Pathological parenting theories of causation were rated the least important, and biological and life-event models the most. Stress, loss and fear were the most commonly reported reactions. Violence, withdrawal and verbal aggression were most often identified as behaviours causing difficulty. Many participants felt guilt, usually in the absence of being blamed. Family members and self-help groups were recalled as being of most help, and professional staff were considered to be of least help. Parenting a son or daughter with schizophrenia frequently causes considerable emotional distress, often with perception of unhelpful responses from professional staff. Parents often blame themselves for the disorder, even when not blamed by others. Guilt does not appear to arise from belief in a pathological parenting model of schizophrenia. Factors contributing to self-blame in this group are discussed, together with suggestions for appropriate therapeutic intervention.

This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies and change in coping strategy over a 1-year period. In particular the differential importance of caregiver capacity (such as social support, health, and personality) compared with careload (such as hours of caregiving and need of the care recipient) is examined within a path model. Data came from a purposive sample of caregivers experiencing heavy demands. Overall, problem-focused coping is used more often than emotion-focused coping (either positive or negative) or seeking social support, but caregivers use all types simultaneously. Caregiver capacity, specifically neuroticism, is the strongest predictor of problem-focused coping with those high in neuroticism less likely to use this strategy. High neuroticism also predicts less use overall and negative emotion-focused coping strategies. Few significant predictors emerge of change; those that did were caregiver capacity, not careload variables. The use of all coping strategies, except seeking social support which remained stable, decreased over a 1-year period.

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

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

Abstract
OBJECTIVE:

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

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

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

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

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

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

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

Abstract

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

Abstract

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

Abstract
The study developed a multidimensional measure to assess participant responsiveness to a preventive intervention and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 caregivers assigned to the intervention condition in the efficacy trial of the FBP. Positive parenting, caregiver depression, and child externalizing problems at baseline were found to predict caregivers' use of program skills outside the group, and more child internalizing problems predicted more positive perceptions of the group environment. Higher levels of skill use during the program predicted increased positive parenting at the 11-month follow-up, whereas positive perceptions of the group environment predicted decreased caregiver depressive symptoms at follow-up. Caregiver skill use mediated the relation between baseline positive parenting and improvements in positive parenting at 11-month follow-up, and skill use and perceived group environment mediated changes in caregiver depression from baseline to 11-month follow-up.

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

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

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

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

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

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

Objective: This analysis sought to describe the characteristics and well-being of carers of older people with mental health problems admitted to a general hospital. Methods: General medical and trauma orthopaedic patients aged 70years or older admitted to an acute general teaching hospital were screened for mental health problems. Those screened positive, together with a carer, were invited to undergo further assessment with a battery of health status measurements. Carers were interviewed to ascertain strain (caregiver strain index (CSI)), psychological distress (12-item General Health Questionnaire) and quality of life (EQ-5D). Results: We recruited 250 patients to the study, of whom 180 were cognitively impaired and had carers willing to take part. After 6months, 57 patients (32%) had died, and we followed up 100 carers. Carers' own health, in terms of mobility, usual activities, and anxiety, was poor in a third of cases. At the time of admission, high carer strain was common (42% with CSI≥7), particularly among co-resident carers (55%). High levels of behavioural and psychiatric symptoms at baseline were associated with more carer strain and distress. At follow-up, carer strain and distress had reduced only slightly, with no difference in outcomes for carers of patients who moved from the community to a care home. Conclusion: Hospital staff should be alert to sources of carer strain and offer carers practical advice and emotional support. Interventions are required to prevent and manage behavioural and psychiatric symptoms at the time of acute physical illness or to alleviate their effects on carers.

'Caring capital' is that subset of social capital characterized by caregiving, charity and compassion when these actions are given out of a concern for the welfare of others. The relationship between caring and various forms of capital has scarcely been noticed by social scientists, either theoretically or empirically. After reviewing the concepts of caring and capital, 77 websites related to caring capital were analyzed to explore these types of questions: How large, influential and effective is the care-oriented sector of the web? How is it best to categorize the diversity of websites promoting caring capital? What social or interactive and user-generated opportunities are offered by these web sites? What implications for the future do these web organizations have? While we cannot offer any definitive answer to the question of the potential of the Internet for facilitating caring capital, this study's glimpse of the web finds only minimal charitable activity compared to the huge need for greater compassionate caring at both individual and organizational levels.

OBJECTIVES: To explore associations between carer burden and characteristics of
(1) the informal carer, (2) the person with dementia, and (3) the care support
network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. MEASUREMENTS: Variables regarding the informal carer included familial
relationship and living situation. Variables relating to the person with dementia
included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q),
depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity
Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The
care support network was measured using hours of caregiving (ADLs, instrumental
ADLs [IADLs], supervision), additional informal care support, and service receipt
(home care, day care). Experience of carer burden was recorded using the Zarit
Burden Interview. Logistic regression analysis was used to determine factors
associated with high carer burden. RESULTS: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with
characteristics of the informal carer (family relationship, specifically wives or
daughters), of the person with dementia (physical dependency in ADLs;
neuropsychiatric symptoms, in particular nighttime behaviors and irritability),
the care support network (hours of caregiving supervision; receipt of other
informal care support) and country of residence. CONCLUSION: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of
distressed behaviors and difficulties in ADLs by the person with dementia may be
addressed by specific nonpharmacological interventions focusing on both elements.
The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.

As the baby boomer generation ages, the need for laws to enhance quality of life for the elderly and meet the increasing demand for family caregivers will continue to grow. This paper reviews the national family leave laws of nine major OECD countries (Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Spain, and the United Kingdom) and provides a state-by-state analysis within the U.S. We find that the U.S. has the least generous family leave laws among the nine OECD countries. With the exception of two states (California and New Jersey), the U.S. federal Family Medical Leave Act of 1993 provides no right to paid family leave for eldercare. We survey the current evidence from the literature on how paid leave can impact family caregivers' employment and health outcomes, gender equality, and economic arguments for and against such laws. We argue that a generous and flexible family leave law, financed through social insurance, would not only be equitable, but also financially sustainable.

This literature review is concerned with caring for older people and employment, with
a particular focus on the public sector. The review has been commissioned from the
Personal Social Services Research Unit (PSSRU) by the Audit Commission.
At the request of the Audit Commission, the emphasis of the review is on two main
questions. First, there is the question of the extent to which mainstream services and
employers take into account the particular circumstances and needs of carers of older
people in their provision of services or employment practices. Second, there is the
question of the effectiveness or cost-effectiveness of carer-friendly services and
employment practices. The Audit Commission asked the researcher to consider
effectiveness and cost-effectiveness from the perspectives of the different interest
groups involved, that is, the carer, the employer, the person being cared for and the
public interest. The focus of the review is primarily on the role of public sector
employers in offering carer-friendly employment policie

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support.

Changes in psychiatric health care and increased reliance on outpatient care have resulted in the transfer of responsibility for care from psychiatric services to social networks. Young person's therefore often take responsibility during their own sensitive phase of emerging adulthood for the care of a loved one who suffers from mental illness. The overall aim of this study was to learn how young persons who provide care and support to a person with mental illness handle their everyday lives. This study also aimed to evaluate web-based versus folder support for these young informal carers. The papers in this thesis use qualitative descriptive (I), comparative (II), mixed methods (III), and experimental (IV) design approaches. Participants were recruited twice: first, 12 participants were recruited for the qualitative papers and interviewed; then 241 participants were included in the interventions and sent self-administered questionnaires by email or the regular postal service at the start of the intervention (T1), after 4 months (T2), and after 8 months (T3) during 2010 and 2011. Young informal carers (YIC) managed their everyday lives and unexpected stressors from their perceived responsibility for the supported person by relying on their own abilities and their social networks and by maintaining a constant state of readiness in case something should happen to the supported person. Supporting a person in the family can have higher positive subjective value than supporting a friend. Although friends perceived that they received more support. They often did not share their situation with others and felt that others did not understand what they were going through; even when YIC did share their burden with their social networks, they felt either that they were ignored or that others did not know how to act or what to say. YIC often experienced a lack of appropriate, available, and serious professional support. They thought that support from professionals might improve their caring situation and that it might ease their burden if the person with mental illness had more professional care and support. Baseline stress levels were high in both intervention groups (web-based support versus informational folder), but decreased in the folder group. The folder group showed more improvement in their caring situation than the web group, and improvements in general selfefficacy, well-being, and quality of life. The web group also showed improved well-being. Non-significant differences between the groups indicate that each intervention could be useful depending upon the individual's preference. This highlights the importance of adopting a person-centred approach to offer young persons the appropriate support

Akad. avh.

This article considers, for a Canadian national probability sample of middle-aged women and
men, the question of how typical is the experience of being "caught in the middle" between being
the adult child of elderly parents and other roles. Three roles are examined: adult child, employed
worker, and parent (and a refinement of the parent role, being a parent of a co-resident child).
Occupancy in multiple roles is examined, followed by an investigation of the extent to which adults
in various role combinations actually assist older parents and whether those who provide frequent
help are also those "sandwiched" by competing commitments. The majority of middle-aged children
do not provide frequent help to parents. Notably, the highest proportion of daughters who assist
elderly parents are those in their fifties whose children are no longer co-resident. For both sons and
daughters, being "caught in the middle" is far from a typical experience in this cross-sectional
analysis.

Abstract
Background: Information and communication technology (ICT)-based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions.

Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges.

Methods: A scoping review methodology was used following the Arksey and O'Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions.

Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers.

Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders-including policy makers, health care professionals, informal caregivers, and care recipients-about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.

Although research on social support has generated findings that are key to the study of social and personal relationships, scholars have yet to deal with a number of conceptual issues that affect how social support is defined and measured. Research on hurt feelings provides some interesting insights concerning the conceptualization of support. Based on this research, as well as a review of the literature on social support, the current article describes several issues that scholars ought to consider as they conceptualize, evaluate, and study social support processes.

Abstract
The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O'Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discusse

Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped them to 'get by' in their challenging childhoods, showing how the protective factors thought to promote 'resilience' were seldom in place for them unconditionally and without associated costs.

An ex post facto study was conducted to investigate treatment outcomes for 80 women and 168 children admitted into a residential substance-abuse treatment program. The results indicated childhood emotional neglect is a barrier for remaining in and completing treatment for African-American women with comorbid psychological disorders but not for those with crack cocaine dependent disorders. African-American women with comorbid psychological disorders were also three times more likely to dropout of treatment. In addition, there were relatively few differences for between drug-exposed and nonexposed children. However, the results indicated that children of substance-abusing women who completed treatment were more likely to have behavioral problems, to receive early intervention services, and to have mothers as legal guardians by the end of treatment. Implications for gender-specific interventions for African-American women and their children in residential treatment are discussed.

Abstract
OBJECTIVE:
To examine the associations between child physical abuse executed by a parent or caretaker and self-rated health problems/risk-taking behaviors among teenagers. Further to evaluate concurrence of other types of abuse and how these alone and in addition to child physical abuse were associated with bad health status and risk-taking behaviors.
METHODS:
A population-based survey was carried out in 2008 among all the pupils in 2 different grades (15 respectively 17 years old) in Södermanland County, Sweden (n=7,262). The response rate was 81.8%. The pupils were asked among other things about their exposure to child physical abuse, exposure to parental intimate violence, bullying, and exposure to being forced to engage in sexual acts. Adjusted analyses were conducted to estimate associations between exposure and ill-health/risk-taking behaviors.
RESULTS:
Child physical abuse was associated with poor health and risk-taking behaviors with adjusted odds ratios (OR) ranging from 1.6 to 6.2. The associations were stronger when the pupils reported repeated abuse with OR ranging from 2.0 to 13.2. Also experiencing parental intimate partner violence, bullying and being forced to engage in sexual acts was associated with poor health and risk-taking behaviors with the same graded relationship to repeated abuse. Finally there was a cumulative effect of multiple abuse in the form of being exposed to child physical abuse plus other types of abuse and the associations increased with the number of concurrent abuse.
CONCLUSIONS:
This study provides strong indications that child abuse is a serious public health problem based on the clear links seen between abuse and poor health and behavioral problems. Consistent with other studies showing a graded relationship between experiences of abuse and poor health/risk-taking behaviors our study shows poorer outcomes for repeated and multiple abuse. Thus, our study calls for improvement of methods of comprehensive assessments, interventions and treatment in all settings where professionals meet young people.

The article analyses the different strands of public concern regarding children in the course of the 20th century, and the political process and the ideological constellation which led up to the UN Convention on the Rights of the Child. The ratification of the Convention and its political effects in northwestern Europe are analysed. Finally, a set of hypotheses are presented about likely determinants of the impact of the Convention in different parts of the world.

This meta-analysis examined 118 studies of the psychosocial outcomes of children exposed to interparental violence. Correlational studies showed a significant association between exposure and child problems (d = -0.29). Group comparison studies showed that witnesses had significantly worse outcomes relative to nonwitnesses (d = -0.40) and children from verbally aggressive homes (d = -0.28). but witnesses' outcomes were not significantly different from those of physically abused children (d = 0.15) or physically abused witnesses (d = 0.13). Several methodological variables moderated these results. Similar effects were found across a range of outcomes, with slight evidence for greater risk among preschoolers. Recommendations for future research are made, taking into account practical and theoretical issues in this area.

Akad. Avh.

The death of a close family member is a profound insult to a child's developmental course. Though early research assumed that childhood bereavement was a risk factor for mental and behavioral disorders in childhood and adult life, recent research has taken an ecological view of childhood development and considers a child's exposures to risk and protective factors. Yet, it remains unclear as to how many children are affected by the death of a close family member each year and how peer support groups can help children to adapt to such an adverse event. This dissertation represents three distinct stages in the development of a comprehensive evaluation for an agency that provides a peer support service for bereaved children and their families. First, a primary question that arose during initial consultations with the agency was to determine how many children are affected annually within Pennsylvania. This led to an exploration of the epidemiology of childhood bereavement. The methods and data sources used to produce these estimates were critically evaluated and modified to offer a new interpretation of available data. Second, it was important to identify constructs that could be used in an outcomes evaluation of the peer support program. Focus groups were used to explore the perceived benefits of attending peer support groups among caregivers and teens who had attended a spring session at the center. The intention to use focus groups was to increase the validity of constructs and, ultimately, the results of an outcomes evaluation.Third, after identifying evaluation constructs a feasibility study was conducted to pilot an outcomes evaluation instrument. The study involved 30 families who attended the spring 2007 sessions at the center. Results suggested that peer support programs can improve children's coping efficacy while helping to improve their caregivers' perception of social support. The program also improved both children and caregivers' sense that they are not alone in their grief.As demonstrated in this dissertation, including the loss of siblings and primary caregiving grandparents in prevalence estimates of childhood bereavement and applying resilience theory to peer support research is of public health relevance.

This paper outlines the broad key findings from a research project on UK childhood bereavement service provision, using eight organizational case studies. Despite a shared objective of 'helping bereaved children' services were very diverse. Three organizational types were identified with differing management and administrative structures, each of which had different implications for staff. Although the overall size and employment status (paid or unpaid) of the respective workforces varied, the number of staff who worked directly with children or their families was similar. Direct and indirect services were offered within a matrix of provision that focussed either on children or on families, and involved individual and/or group work activities. Obtaining sufficient funding presented services with immense challenges. Unless they were part of a larger 'host' organization with a continued commitment to childhood bereavement service provision, services were unable to rely on regular and long-term sources of funding. This can have a detrimental impact on the core business, and on the ability of the service to develop their provision. Improving and increasing research, audit and evaluation of childhood bereavement services would contribute to supporting the case for both individual services and for the childhood bereavement sector as a whole.

Abstract
OBJECTIVE:
Although the death of a parent is one of the most significant stressors a child can experience, the psychiatric sequelae of parental death are not fully understood.
METHOD:
A total of 360 parent-bereaved children (ages 6-17) and their surviving parents were directly interviewed four times during the first 2 years following the death (at 2, 6, 13, and 25 months). Data collection occurred from 1989 to 1996. Psychiatric symptomatology was compared among the bereaved children, 110 depressed children, and 128 community control children and their informant parents. Additional analyses examined simple bereavement without other stressors versus complex bereavement with other stressors and anticipated versus unanticipated death.
RESULTS:
Bereavement following parental death is associated with increased psychiatric problems in the first 2 years after death. Bereaved children are, however, less impaired than children diagnosed with clinical depression. Higher family socioeconomic status and lower surviving parents' level of depressive symptoms are associated with better outcomes. Complex bereavement was associated with a worse course, but anticipation of the death was not.
CONCLUSIONS:
Childhood bereavement from parental death is a significant stressor. Children who experience depression in combination with parental depression or in the context of other family stressors are at the most risk of depression and overall psychopathology.

Many young people who are mistreated by an adult, victimized by bullies, criminally assaulted, or who witness domestic violence react to this violence exposure by developing behavioral, emotional, or learning problems. What is less well known is that adverse experiences like violence exposure can lead to hidden physical alterations inside a child's body, alterations that may have adverse effects on life-long health. We discuss why this is important for the field of developmental psychopathology and for society, and we recommend that stress-biology research and intervention science join forces to tackle the problem. We examine the evidence base in relation to stress-sensitive measures for the body (inflammatory reactions, telomere erosion, epigenetic methylation, and gene expression) and brain (mental disorders, neuroimaging, and neuropsychological testing). We also review promising interventions for families, couples, and children that have been designed to reduce the effects of childhood violence exposure. We invite intervention scientists and stress-biology researchers to collaborate in adding stress-biology measures to randomized clinical trials of interventions intended to reduce effects of violence exposure and other traumas on young people.

Akad. Avh.

Childhood poverty has moved from the periphery to the centre of the policy agenda following New Labour's pledge to end it within twenty years. However, whether the needs and concerns of poor children themselves are being addressed is open to question. The findings raise critical issues for both policy and practice - in particular the finding that children are at great risk of experiencing exclusion within school. School has been a major target in the drive towards reducing child poverty. However, the policy focus has been mainly about literacy standards and exclusion from school. This book shows that poor children are suffering from insufficient access to the economic and material resources necessary for adequate social participation and academic parity.Childhood poverty and social exclusion will be an invaluable teaching aid across a range of academic courses, including social policy, sociology, social work and childhood studies. All those who are interested in developing a more inclusive social and policy framework for understanding childhood issues from a child-centred perspective, including child welfare practitioners and policy makers, will want to read this book.Studies in poverty, inequality and social exclusion seriesSeries Editor: David Gordon, Director, Townsend Centre for International Poverty Research.Poverty, inequality and social exclusion remain the most fundamental problems that humanity faces in the 21st century. This exciting series, published in association with the Townsend Centre for International Poverty Research at the University of Bristol, aims to make cutting-edge poverty related research more widely available. For other titles in this series, please follow the series link from the main catalogue page.

AIM: To investigate whether socio-economic status (SES) in childhood and school failure at 15 years of age predict illicit drug abuse in youth and young adulthood. DESIGN, SETTING AND PARTICIPANTS: Register study in a Swedish national cohort born 1973-88 (n = 1,405,763), followed from age 16 to 20-35 years. Cox regression analyses were used to calculate hazard ratios (HR) for any indication of drug abuse. MEASUREMENTS: Our outcomes were hospital admissions, death and criminality associated with illicit drug abuse. Data on socio-demographics, school grades and parental psychosocial problems were collected from censuses (1985 and 1990) and national registers. School failure was defined as having mean school grades from the final year in primary school lower than -1 standard deviation and/or no grades in core subjects. FINDINGS: School failure was a strong predictor of illicit drug abuse with an HR of 5.87 (95% CI: 5.76-5.99) after adjustment for age and sex. Childhood SES was associated with illicit drug abuse later in life in a stepwise manner. The lowest stratum had a HR of 2.28 (95% CI: 2.20-2.37) compared with the highest stratum as the reference, when adjusted for other socio-demographic variables. In the fully adjusted model, the effect of SES was greatly attenuated to an HR of 1.23 (95% CI: 1.19-1.28) in the lowest SES category, while the effect of school failure remained high with an HR of 4.22 (95% CI: 4.13-4.31). CONCLUSIONS: School failure and childhood socio-economic status predict illicit drug abuse independently in youth and young adults in Sweden.

We examined prevalence of parental deaths among former out-of-home care youths at age 18 and 25, and odds of parental loss compared with peers from similar socio-economic childhood backgrounds. The study utilized Swedish national register data for 12 entire birth cohorts (1972–1983), 35 550 former out-of-home care youths and 1 138 726 cohort peers without out-of-home care experiences. Logistic regression models were used to compute odds ratios for parental loss through death.

It was especially common among former residents of long-term out-of-home care to be motherless (11%), fatherless (11–13%) or orphaned (3–4%) at age 18, compared with non-foster care peers (1%, 3% and 0.03%). Twenty-six per cent had lost at least one parent (4% among non-foster care peers). At age 25, the figures had increased considerably; 36% had lost at least one parent, compared with 7% in the majority population. Adjusted odds ratios for parental loss among long-term care youth were strikingly high, particularly for having a deceased mother. In short-term and intermediate care, most youths with deceased parents had suffered parental loss before entering foster care. For youth from long-term care, parental death after start of placement was most common.

Childhood traumatic grief refers to a condition in which characteristic trauma-related symptoms interfere with children's ability to adequately mourn the loss of a loved one. Current concepts of this condition suggest that it overlaps with but is distinct from uncomplicated bereavement, adult complicated grief, and posttraumatic stress disorder. This article describes the core features of childhood traumatic grief; differentiates it from these related conditions; and reviews the current research status of suggested diagnostic criteria, assessment instruments, and treatments for this condition. Implications for future clinical practice, research, and policy are also addressed.

Discussing childhood traumatic grief, a condition likened to uncomplicated bereavement, adult complicated grief, and posttraumatic stress disorder (PTSD), this article addresses the core features of this condition and its potential treatments. After asserting that childhood traumatic grief is not consistently differentiated from adult complicated grief, normal childhood bereavement, or PTSD, the authors distinguish uncomplicated bereavement as deep mental anguish or sorrow over a loss. After defining adult complicated grief as normal bereavement complicated by separation over the loss of a relationship, this article discusses childhood PTSD as a mental condition following an experienced or witnessed traumatic event, in order to differentiate these conditions from childhood traumatic grief. Addressing childhood traumatic grief itself, the authors distinguish this condition from those aforementioned by defining it as the encroachment of traumatic symptoms on a child's ability to grieve. Citing differences among childhood traumatic grief and uncomplicated bereavement, adult complicated grief, and PTSD, the authors argue that in childhood traumatic grief a child is so traumatized that he or she is unable to complete the tasks of uncomplicated bereavement and is plagued with horrors and fears associated with the idea of death. The authors suggest that mediating, assessing, and treating childhood traumatic grief is best accomplished by early assessment, careful appraisal of a child's family circumstances, and prompt intervention. The authors conclude that clinicians need to be better trained at recognizing the distinctions between childhood traumatic grief and other forms of grief in order to best serve their child clients

Summary
In Norway and the Nordic countries more generally, the awareness of children affected by parental
illness or substance abuse has increased during the last 10 years. There has also been a general shift
from inpatient to outpatient care in public hospitals, and from public hospitals to primary health
care. This shift has increased the number of parents who live at home with more severe illness while
they are in active treatment. They need more informal and formal external care in their own homes.
Until recently, care for the ill, disabled, or elderly within the family has been invisible and barely
mentioned in public documents, statistics, or research reports. This applies even more for children's
caregiving activities. In 2010, the Research Council of Norway called for research of this question,
pointing out that 'little research has been conducted in this field, where children themselves serve as
informants, and more insight is needed about which interventions and measures that provide
effective help'. The main aims of the papers discussed in this thesis have been to explore:
• The extent and nature of the children's caring activities
• The positive and negative outcomes of the children's caring activities
• Factors associated with the children's quality of life (QoL)

Keywords:
children and their life experiences;
experiences of children of parents with intellectual disabilities;
adult children, raised by parents with intellectual disabilities;
children of mothers with intellectual disabilities;
children being affected - with mothers diagnosed as having intellectual disability;
everyday life within the family, school and friends;
support from public authorities and life - as adolescents and young adults;
alternating between being children and adults;
children of parents with intellectual disabilities - risk of facing difficulties
Summary
This chapter contains sections titled:

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.

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.

Akademisk avhandling nr 17

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för närstående i deras föränderliga livssituation under de sex första månaderna efter en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter. Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående om vad det innebar att vara närstående till en person drabbad av stroke. Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs metod för kvalitativ innehållsanalys användes för att analysera data. I delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs metod för kvalitativ innehållsanalys. Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att vara närstående till en person drabbad av stroke innebar en kamp för frihet. Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser. De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade de ohälsan och dess konsekvenser i sina liv (II). Den information som närstående ville ha handlade om den strokedrabbade, de professionella och om sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat till personlig involvering, situationella faktorer, olika kunskapsbehov och sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de olika strokeenheterna (IV). Konklusion: Att bli närstående till en person som drabbats av stroke innebär att hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen beredd att ordna livet utifrån de nya förutsättningarna och därför behöver sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå8 ende i de nya och ovana livssituationerna. Att vara närstående under de sex första månaderna efter den drabbades insjuknande innebär att kämpa för frihet, dock utan att överge den drabbade (II). I denna process är det viktigt att den närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv och omsorg om den drabbade och i relation till andra anhöriga. Närstående är kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter varierar stort mellan olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar enbart om den drabbade och berör inte alls de närståendes behov eller situation. Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske hög tid att se över lagen för att undvika att närstående blir "den andra patienten i familjen".

Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för
närstående i deras föränderliga livssituation under de sex första månaderna efter
en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet
att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid
svenska strokeenheter.
Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående
till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående
om vad det innebar att vara närstående till en person drabbad av stroke.
Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data
från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska
hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie
III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå
under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs
metod för kvalitativ innehållsanalys användes för att analysera data. I
delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska
strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs
metod för kvalitativ innehållsanalys.
Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva
kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet
som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att
vara närstående till en person drabbad av stroke innebar en kamp för frihet.
Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser.
De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade
de ohälsan och dess konsekvenser i sina liv (II). Den information som
närstående ville ha handlade om den strokedrabbade, de professionella och om
sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat
till personlig involvering, situationella faktorer, olika kunskapsbehov och
sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll
adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå
när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de
olika strokeenheterna (IV).
Konklusion: Att bli närstående till en person som drabbats av stroke innebär att
hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen
beredd att ordna livet utifrån de nya förutsättningarna och därför behöver
sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå-
8
ende i de nya och ovana livssituationerna. Att vara närstående under de sex första
månaderna efter den drabbades insjuknande innebär att kämpa för frihet,
dock utan att överge den drabbade (II). I denna process är det viktigt att den
närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv
och omsorg om den drabbade och i relation till andra anhöriga. Närstående är
kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och
framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder
och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i
att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial
som erbjuds närstående vid svenska strokeenheter varierar stort mellan
olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum
på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar
enbart om den drabbade och berör inte alls de närståendes behov eller situation.
Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske
hög tid att se över lagen för att undvika att närstående blir "den andra patienten
i familjen".
Sökord: Närstående, stroke, strokeenheter, skriftliga informationsmaterial,
lärande.

BACKGROUND: Increased mortality rates among previous child and adolescent psychiatry (CAP) patients have been found in Scandinavian studies up to the 1980s. The suicide risk in this group has been estimated to be almost five times higher than expected. This article addresses two questions: Do Swedish CAP patients continue to risk premature death and what kind of information related to psychiatric symptoms and/or behavior problems can predict later suicide? METHODS: Hospital files, Sweden's census databases (including immigration and emigration) and administrative databases (including the Swedish Hospital Discharge register and the Persons Convicted of Offences register), and the Cause of Death register were examined to determine the mortality rate in a group of 1,400 former CAP inpatients and outpatients over a period of 12-33 years. Observed and expected numbers of deceased were calculated with the prospective method and the standardized mortality ratio (SMR) method. The relative risk or the risk ratio (RR) is presented with 95% confidence intervals (CIs). Significance level tests were made using two-by-two tables and chi-square tests. The Cox proportional-hazards regression model was used for survival analysis. RESULTS: Twenty-four males and 14 females died. Compared with the general population, the standardized mortality ratio in this group of CAP patients was significantly higher in both sexes. Behavioral problems, school problems, and co-morbid alcohol or drug abuse and criminality (including alcohol-related crimes) were found to be important predictors. Thirty-two deaths were attributed to suicide, intoxication, drug overdose, or accident; one patient died of an alcohol abuse-related disorder, and five patients died of natural causes. Suicide was the most common cause of death, but only 2 of these 19 cases were initially admitted for attempted suicide. CONCLUSION: We suggest that suicide and death prevention among CAP patients may not be a psychiatric issue per se but a future function of society's juvenile social-welfare investments and juvenile-delinquency prevention programs.

Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families' preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of 'sheer exhaustion' that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon 'being too tired' must be understood in relation to transition processes and changes in lifestyle having an affect upon cultural values in relation to filial piety. Because, at the same time the changes on cultural values might not change accordingly among the elderly who are the ones moving into residential care, resulting in them quite often being left out of the actual decision.

This manual is designed to serve several purposes. First, it sets forth detailed instructions on conducting a highly effective, empirically validated program for the clinical training of parents in the management of behavior problem children. Second, it provides a series of parent handouts to be used during the course of the program. These handouts include various rating scales and forms to be completed by the parent, as well as instructions to the parent for use with each step of the program. The handouts are designed to be easy to read and brief. They are not meant to be used without training by a skilled child/family therapist. Finally, the manual outlines methods of assessment that the trainer may wish to employ in the initial evaluation of the child and family or in the periodic evaluation of treatment effects throughout training. The program was designed for children between 2 and 11 years of age. (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Delaktighet och kommunikation är centrala ideal inom vård, omsorg och socialt arbete. Men vad innebär delaktighet i praktiken och hur kan teorier om delaktighet och professionella samtal förstås i olika praktiska sammanhang? Med utgångspunkt i svensk och internationell forskning ger den här boken en djupare inblick i villkor och möjligheter för professionella samtal. I ett tvärvetenskapligt perspektiv på kommunikation presenteras exempel från nya studier på vad delaktighet innebär inom en rad miljöer: nödsamtal, akut- och specialistsjukvård, äldreomsorg, biståndsbedömning, arbetsrelaterad rehabilitering och vårdutbildning.

Boken passar väl för utbildningar till sjuksköterska, socionom, arbetsterapeut, sjukgymnast och läkare. I boken beskrivs även olika metoder för datainsamling och analys av data. Det innebär att boken med fördel kan knytas till metodundervisning och examensarbete på avancerad nivå.

Redaktörerna, Pia Bülow, Daniel Persson Thunqvist & Inger Sandén, och de övriga författarna är knutna till forskarnätverket Kommunikation i vård och omsorg (KIVOS).

Pia Bülow är lektor i socialt arbete vid Avdelningen för beteendevetenskap och socialt arbete på Hälsohögskolan i Jönköping.

Inger Sandén är lektor i vårdvetenskap vid Avdelningen för specialistutbildning vid Högskolan Väst och vid Avdelningen för omvårdnad vid Hälsouniversitetet, Linköpings universitet.

Daniel Persson Thunqvist är lektor i sociologi vid Linköpings universitet.

Rapporten beskriver ett utvecklingsarbete inom FoU Skåne som haft som mål att finna former för brukare att framföra synpunkter, önskemål och krav på den verksamhet som de tar del av. Utgångspunkten har varit Empowerment - ett begrepp som här huvudsakligen använts för att belysa brukarnas möjlighet att bestämma över sina liv och erövra egenmakt - ett exempel på en botten-uppstrategi för inflytande.

Metoden som benämnts Delaktighetsmodellen har inspirerats av andra former för brukarinflytande som BIKVA och Lyttemöten från Danmark och BUKU från Sverige.

Rapportens första del är en beskrivning av processen och den implementering som skett i Skåne under tre år. Den andra delen kan ses som en fördjupning av motiven och en beskrivning av de bakomliggande teoretiska begreppen.

Self-harming behaviour among adolescents, and particularly adolescent girls, has evoked much public attention. This article presents a Swedish study about what information assessment and treatment agencies have about self-harming behaviour in the form of cutting and burning in adolescent girls. The study was made on assignment by the Swedish National Board of Health and Welfare. All public agencies assessing or treating adolescents with psychological problems in three Swedish cities were asked to deliver information about self-harming behaviour in the form of self-cutting or self-burning in girls between 13 and 18 years of age. In addition, the young offender institutions within the National Board of Institutional Care treating teenager girls were asked to deliver information about self-harming behaviour in their clients. We found that about 1% of the total population of girls in these ages were known to have cut or burnt themselves and about one third of the girls in the institutions. Attempts to distinguish subgroups among the girls were only partly successful. Although some subgroups could be identified, the overlap between them was large. The conclusion was that this behaviour may be seen as an expression of a wide variety of problems in a heterogeneous group of young persons. © 2007 Springer Science+Business Media, LLC.

BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.

BACKGROUND: Family caregivers in palliative care have a need for knowledge and
support from health professionals, resulting in the need for educational and
supportive interventions. However, research has mainly focused on the experiences
of family caregivers taking part in interventions. To gain an increased
understanding of complex interventions, it is necessary to integrate the
perspectives of health professionals and family caregivers. Hence, the aim of
this study is to explore the perspectives of health professionals and family
caregivers of delivering and participating in a psycho-educational intervention
in palliative home care.
METHODS: A psycho-educational intervention was designed for family caregivers
based on a theoretical framework describing family caregiver's need for knowing,
being and doing. The intervention was delivered over three sessions, each of
which included a presentation by healthcare professionals from an intervention
manual. An interpretive descriptive design was chosen and data were collected
through focus group discussions with health professionals and individual
interviews with family caregivers. Data were analysed using framework analysis.
RESULTS: From the perspectives of both health professionals and family
caregivers, the delivering and participating in the intervention was a positive
experience. Although the content was not always adjusted to the family
caregivers' individual situation, it was perceived as valuable. Consistently, the
intervention was regarded as something that could make family caregivers better
prepared for caregiving. Health professionals found that the work with the
intervention demanded time and engagement from them and that the manual needed to
be adjusted to suit group characteristics, but the experience of delivering the
intervention was still something that gave them satisfaction and contributed to
them finding insights into their work.
CONCLUSIONS: The theoretical framework used in this study seems appropriate to
use for the design of interventions to support family caregivers. In the
perspectives of health professionals and family caregivers, the
psycho-educational intervention had important benefits and there was congruence
between the two groups in that it provided reward and support. In order for
health professionals to carry out psycho-educational interventions, they may be
in need of support and supervision as well as securing appropriate time and
resources in their everyday work.

OBJECTIVE:
To identify the preferences of patients with stroke and their carers for format and delivery style, of different categories of stroke information, and whether these preferences changed over time.
METHODS:
A semi-structured questionnaire, designed to explore preferences for four topic categories was administered to 34 acute stroke unit patients and 18 carers prior to discharge and again, 3 months after discharge to 27 of these patients and 16 of these carers.
RESULTS:
Overall format preferences were a combination of face-to-face, written and telephone for both patients and carers prior to discharge. This combination continued for carers following discharge, while patients preferred face-to-face, written and alternative formats of online and audiovisual at this time. Patients and carers most frequently preferred delivery styles appeared to be a mix of active and passive delivery styles, across all topics. Access to a telephone hotline was a popular delivery style.
CONCLUSION:
Patient and carer preferences varied, supporting the need to offer a variety of formats and delivery styles at each point of contact.
PRACTICE IMPLICATIONS:
By focusing on specific formats and delivery styles for different topics, health professionals may maximise the access to, and relevance of, stroke information for patients and their carers.

Camilla Öhmans gripande berättelse om sin mamma som insjuknade och avled i en avancerad form av demenssjukdom som heter Frontallobsdemens. Boken är ärligt skriven om egna livserfarenheter och beskriver dem olika händelseförlopp och stadier i sjukdomen, bemötandet inom vården samt ger anhöriga konkreta råd på vägen. Som läsare kommer du även få ta del av guldkornen i en familjs historia om en stark kärlek, hyllningen till livet, föräldraskap och om envisheten att fortsätta kämpa fastän livet visar oss sin hårdaste sida.
Denna ljudbok är skapad för att hjälpa andra anhöriga som lever nära en person som är sjuk i en demenssjukdom men även för dem som önskar få en bättre förståelse om sjukdomen som sådan. Det är viktigt att belysa hur dessa personer med denna form av sjukdom och dess anhöriga bemöts av samhället idag. Det är dags att våga börja prata öppet om dessa sjukdomar för att påverka situationen med att se till att de demenssjuka ska få en bra vård, men även att dem anhöriga ska erhålla rätt stöd då livet för dem dagligen består av olika utmaningar och andra påfrestningar som riskerar dem själva att bli sjuka.

Doktorsavhandling

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

Purpose: We reviewed intervention studies that reported dementia caregiver outcomes published since 1996, including psychosocial interventions for caregivers and environmental and pharmacological interventions for care recipients. Our goal was to focus on issues of clinical significance in caregiver intervention research in order to move the field toward a greater emphasis on achieving reliable and clinically meaningful outcomes. Design and Methods: MEDLINE, PsycINFO, and Cumulative Index to Nursing & Allied Health databases from 1996 through 2001 were searched to identify articles and book chapters mapping to two medical subject headings: caregivers and either dementia or Alzheimer's disease. Articles were evaluated on two dimensions, outcomes in four domains thought to be important to the individual or society and the magnitude of reported effects for these outcomes in order to determine if they were large enough to be clinically meaningful. Results: Although many studies have reported small to moderate statistically significant effects on a broad range of outcomes, only a small proportion of these studies achieved clinically meaningful outcomes. Nevertheless, caregiving intervention studies have increasingly shown promise of affecting important public health outcomes in areas such as service utilization, including delayed institutionalization; psychiatric symptomatology, including the successful treatment of major and minor depression; and providing services that are highly valued by caregivers. Implications: Assessment of clinical significance in addition to statistical significance is needed in this research area. Specific recommendations on design, measurement, and conceptual issues are made to enhance the clinical significance of future research.

I Den fullbordade livscykeln blickar Erik H Erikson tillbaka på sin berömda psykosociala utvecklingsteori. Människans psykiska utveckling fortgår i åtta olika stadier livet igenom, enligt Erikson. Han betraktar här, 80 år gammal, sin tankebyggnad utifrån den sista livsfasen där han själv befinner sig – vishetens, förtvivlans och försoningens fas. Boken ger en sammanfattning av hans teorier och ett koncentrat av hans livsvisdom.
I ljuset av den sista perioden i livet får Eriksons framställning en djupt existentiell prägel. Han uppehåller sig bl a vid ritualiseringen i samspelet mellan människor och det upplyftande mötet med "den andre", vilket håller hoppet vid liv och kan ge näring åt tron på någonting bortom den fullbordade livscykeln.

I ett tillägg i denna utgåva inför Joan Erikson, hans hustru och samarbetspartner i över 60 år, ett nionde stadium, åldrandet i 80-90-årsåldern. Själv över 90 lägger hon vidare ett samhälleligt-kulturellt perspektiv på åldrandet och tar slutligen upp begreppet gerotranscendens, tendensen att gamla människor löser upp tids-rumsperspektivet på ett sätt som inte sällan vidgar det och möjliggör en fördjupad andlighet.

Edna Alsterlund träffar Ingemar Johansson första gången i USA, 1979. Trots åldersskillnaden, sexton år, finner de varandra. Hon upptäcker att boxningslegenden är en varm, godhjärtad och allmänbildad person med aptit på livet. Som reporter för bildtidningen Se umgås Edna bland artister, politiker, idrottsstjärnor, företagsledare och andra kända och intressanta personer. I USA är Ingemar ständigt efterfrågad i olika sammanhang, som idrottsevenemang och välgörenhetsgalor. Under de följande åren kommer paret att tillsammans delta intensivt i ett internationellt jetset-liv över hela världen.

Efter femton goda år tillsammans börjar Edna oroas av förändringar i Ingemars personlighet. Han får humörsvängningar, kör vilse och hittar inte hem. Beter sig bisarrt och blir fixerad vid alkohol. Till slut får Edna klarhet. Ingemar har drabbats av Alzheimers sjukdom. Och han saknar själv all sjukdomsinsikt.

Den längsta ronden är en bok om att vårda en anhörig som drabbats av Alzheimers sjukdom, ofta kallad "de anhörigas sjukdom". Författaren skriver öppenhjärtigt men också med stor respekt och kärlek om hur tillvaron blir en kamp för att få livet att fungera, hur hon försöker tillgodose Ingemars behov och samtidigt på olika sätt skydda honom mot omgivningens alltmer intensiva spekulationer. Edna har skrivit den bok hon själv letade efter då hon insåg att Ingemar drabbats av förtidig demenssjukdom. Hon belyser anhörigvårdarens svåra och utsatta situation. I boken medverkar också flera kända experter, bland andra grundaren av Stiftelsen Silviahemmet, professor emeritus Barbro Beck-Friis.

I vilken utsträckning är hälsan ojämlikt fördelad i Sverige och i övriga världen? Varför lever människor med högre social position längre än andra? Hur kan hälsan fördelas mer rättvist?
Dessa är några av de frågor som denna unika svenska bok önskar besvara och klargöra. Boken handlar om hur människors position i samhällets hierarkiska strukturer är nära förknippad med systematiska skillnader i hälsa. Var vi råkar födas i världen, men även den sociala position vi har i ett givet samhälle, har stor betydelse för vår hälsa och livslängd. Trots att en jämlik hälsa borde vara en mänsklig rättighet har hälsans ojämlika fördelning ofta stått långt ned på den politiska dagordningen.

Den orättvisa hälsan är en lärobok som samlar det breda forskningsfältet kring social ojämlikhet i hälsa och förklarar dess teorier, begrepp och metoder. Boken tar upp dagsaktuella frågor om hälsans sociala villkor och ger förslag på möjliga åtgärder för att minska ojämlikhet i hälsa i befolkningen utifrån de sociala bestämningsfaktorerna för hälsa.
Boken vänder sig till studerande inom samhällsvetenskapliga ämnen, vård och medicin samt andra som vill fördjupa sig i ojämlikhet i hälsa. Den lämpar sig också för verksamma inom folkhälsoområdet och för politiker.

Människor med ett psykiskt funktionshinder ska ha samma möjlighet till gemenskap och delaktighet som andra. Den målsättningen var grunden för den svenska psykiatrireformen som trädde i kraft 1995.

De psykiskt funktionshindrades livssituation skulle förbättras med hjälp av effektivare insatser och tydligare ansvarsfördelning mellan kommuner och landsting.

Det blev en omdebatterad reform. Kritikerna menar att de psykiskt funktionshindrade riskerar att överges eller hänvisas till en socialtjänst utan nödvändig kunskap.

Förespråkarna hävdar tvärt om att utvecklingen är nödvändig för att kunna integrera de psykiskt funktionshindrade i samhället.

I denna bok studeras planeringen och genomförandet av psykiatrireformen samt den historiska utvecklingen på psykiatriområdet, från de stora mentalsjukhusen till dagens situation. Utvecklingen av nya synsätt och arbetsmetoder granskas, liksom den politiska processen bakom psykiatrireformens tillkomst.
PinterestTwitter

Dolphin och Star älskar sin mamma Marigold. Hon är rolig, äventyrlig och påhittig - och täckt från topp till tå med tatueringar. Flickorna tycker att de har världens bästa mamma. Om hon bara inte vore så oberäknelig, opålitlig och sällan fanns där för dem. Marigold festar mycket och lever sitt liv som hon gjorde under hippie-tiden. Men ibland går hon in i djupa depressioner. Hon är inte någon exemplarisk mamma och kanske inte heller rätt person att ha ansvar för två unga flickor?

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

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

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

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

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

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

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

This study reports findings from focus group discussions with aging service providers and family caregivers about low-income ambulatory or homebound older adults' depressive symptoms and barriers to seeking treatment. It also reports the participants' suggestions about interventions for depression that can be integrated into existing aging service settings or implemented in older adults' homes, as well as the type of training the aging service providers need if they are to provide services for depression. Participants identified social isolation, loneliness, and loss and grief as major correlates of depression in older adults. Barriers to seeking treatment included older adults' denial of or lack of understanding about depression, a sense of stigma, financial worries, and lack of mobility. Suggested depression treatments included brief cognitive behavioral interventions, friendly visitors, and physical exercise. Bachelor's-level service providers expressed their need and desire for training in mental health assessment and brief psychotherapy.

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

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

Eli har en storebror. Det är det många som har förstås. Men inte många har en storebror som Elis. Han är som en gåta tänker Eli ibland. Brorsan. En gåta som inte går att lösa. Ofta oroar sig Eli för brorsan. Men de hör ihop. Brorsan och Eli. Det är bara så. Och inte många har en storebror som Elis. Så det så. 

Eli har en storebror - en berättelse om syskonkärlek.

For many individuals, schizophrenia is a severe and enduring illness. While nurses need to understand the symptomatology of the illness in order to provide specific care and treatment, it also is important to find out how people with schizophrenia embody the illness. Capturing this knowledge will help nurses to provide more appropriate care to these individuals. This paper, which is taken from a larger qualitative study, reports the lived experience of young adults with schizophrenia. Three main themes emerged from the data, which highlighted how these individuals found meaning in schizophrenia. The first theme,"embodied temporality: illness as a catastrophic experience,"portrayed how schizophrenia affected participants' temporality or lived time. The second theme,"embodied relationality: illness as a mediator of social relationships,"reflected how the illness affected their relationships with others. The third theme,"embodied treatment: medications side effects as burdensome,"illustrated how the side effects of antipsychotic medications distorted the individual's perception of his or her body and how it compromised the ability to establish and maintain sexual relationships. The findings are important to mental health nurses because they highlight the need to be sensitive to how people with schizophrenia find meaning in their illness experience and to incorporate this knowledge into the care that they provide.

The systematic review methodology literature refers to the importance of involving stakeholders, including service users & carers, in the research. However, compared with other aspects of the methodology, this aspect of conducting systematic reviews is underdeveloped & the practice of involvement appears highly variable. This article draws on the experience of working with service users & carers in one systematic review to review the barriers to participation & the components of effective involvement. It suggests that quality standards can be identified for service user & carer involvement in systematic reviews, which will benefit policy & practice development. 77 References.

in our discussion of emotion and dysfunction, we have intimated that emotions are instructive about persons because both emotions and the personality are organized around the problem of surviving, getting along, and flourishing over the life course
begin by addressing the question of what an emotion is / describe our own [the authors'] recent work directed at illuminating what we see as one of the important issues in emotion theory—the role of cognitive appraisal
embed this work in a general model of emotion, which identifies the key variables and processes within a systems framework emphasizing person-environment relationships and cognitive mediation
illustrate how emotion theory makes firm contact with a variety of topics currently being pursued across diverse psychological disciplines, especially personality and social psychology
the adaptational problem and the evolution of emotion / appraisal theory / personality, society, and biology in emotion (PsycINFO Database Record (c) 2016 APA, all rights reserved)

This study examines plans for future caregiving made by family members of younger (n =59) and older adults (n =16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.

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

Adverse childhood events can influence the development of emotional and physiological self-regulatory abilities, with significant consequences for vulnerability to psychological and physical illness. This study evaluated stress sensitization and inoculation models of the impact of early parental death on stress exposure and reactivity in late adolescence/young adulthood. Ambulatory blood pressure (BP) and diary reports of minor stress were collected every 30 min during waking hours over a 24-hr period from 91 late adolescents/young adults (43 early bereaved, 48 nonbereaved). Across the sample, minor stressors were associated with elevated BP and negative affect. The bereaved group had lower BP than did the nonbereaved group. Within the bereaved group, higher perceived caring from the surviving parent was associated with fewer reports of minor stress and lower stress-related negative affect. Higher perceived parental caring during childhood was associated with lower BP across the sample and more frequent hassles in the nonbereaved group. Findings support both the stress inoculation and sensitization models, suggesting that childhood parental loss and parental caring exert important influences on children's development of stress sensitivity.

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

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

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

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

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

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

Families living with mental illness experience an added burden and may experience such psychological distress that they require therapeutic intervention. The Internet is used as a daily tool by a growing share of the population worldwide, including for health related matters. Its potential as a health care tool, including advantages and drawbacks, should be explored. The overall aim of the present thesis was to explore the relatives' experiences of living close to a person with depression and the Internet's potential to address their needs. Explorative qualitative research has been used to map the e-health field in relation to depression, to explore what the Internet offers the families living with depression, as well as the relatives' experiences of living with a person with depression. An iterative design process was used in the development of a digitally based tool aimed at supporting the relatives in their daily life with depression. Users' experiences of the tool were explored using qualitative explorative research. A vast array of different organizations and initiatives are represented within the e-health field. However, initiatives that are targeted and tailor-made for families living with depression are scarce. Research in the e-health field with focus on depression illuminates health seekers' and online community users' profiles, effects of online cognitive behavioral therapy (CBT), and a number of strengths (i.e. accessibility) and weaknesses (i.e. reliability) related to the Internet as a health care tool. Living close to a person with depression can strongly affect the private, social and professional areas of the relatives' daily life. A growing feeling of not living one's own life may arise, due to the difficulties of balancing relationships, a process of adaptation and re-evaluation of life circumstances, and a struggle to act as advocate and voice for the person with depression within the health care system and society. Relatives often come in contact with health professionals on 12 behalf of their ill kin and need information and support; needs that are rarely addressed by the health care system. A digitally based tool aimed at supporting the relatives in their daily life with depression was developed using an iterative design process. The tool's development was carried out in close cooperation with users with the help of focus groups and prototypes. Motivations and obstacles to using online self-help tools were illuminated. Privacy stood out as an important factor when developing online tools. The study resulted in a website, www.sommarregn.se, entailing an online diary (private and encrypted), including scales, and a forum (members only access), including an e-mail function. Users' experiences of the website over a 10 weeks test period were illuminated. The diary and forum appeared to fill a number of valuable functions, although a further development of the tool may enhance its usability, which was good. The tool promoted communication with the self and others. The Internet as a technology offered a number of advantages, such as convenience of use and perceived anonymity, and disadvantages, such as qualitative issues. The relatives' needs ought to be addressed in order to support them in a daily life with depression. Empowered relatives are in a better position to help their ill kin and support may prevent ill health in the relatives themselves, and subsequently additional costs to society. Health care professionals meet patients that are also online health seekers. Professionals must be aware of the advantages and drawbacks of e-health when meeting patients. In an economically pressured society, alternative support options have to be explored in order to address the needs of target groups at risk.

Bakgrund till studien är ett behov och ett intresse att belysa den situation och de dilemman
som föräldrar har att förhålla sig till då deras första barn har ett funktionshinder och de vill
ha fler barn. Mitt intresse väcktes i samband med att jag träffade nyblivna
förstagångsföräldrar till barn med funktionshinder i mitt arbete på en samtalsmottagning
för anhöriga. Syftet med undersökningen är att få vidgad kunskap om föräldrarnas tankar
och erfarenheter i samband med deras andra graviditet.
Studien bygger på intervjuer med föräldrar utifrån frågor om hur de tänkte kring beslutet
om ett barn till, om graviditeten, om möjligheterna till fosterdiagnostik, hur de upplevde
förlossningen och om hur det var att bli föräldrar igen.
Ur intervjumaterialet framstod ett flertal dilemman som föräldrarna hade att ta ställning
till. Dessa berörde existentiella och etiska frågor bl.a. kring människovärde och
funktionshinder och svåra beslut kring fosterdiagnostik och abort i början av processen.
Genom föräldrarnas berättelser går ett stråk av sorg och graviditeterna präglades av oro.
Oron tog sig olika utryck men för flera fanns den kvar länge trots att barnet bedömts som
friskt. Oron relaterade i hög grad till hur det första barnets funktionshinder uppkommit
och gestaltade sig.
Att få ett friskt barn var för alla intervjuade en stor glädje och en revolutionerande
erfarenhet. Den innebar först och främst vetskapen om att det kunde gå bra. Den innebar
också att deras identitet som föräldrar kunde stärkas och relationerna till omvärlden
normaliseras.
Ett kvarstående dilemma för föräldrarna idag är deras kamp att få det stöd de behöver för
att hinna och orka med sina barn och ändå leva så normalt som möjligt. Ett annat dilemma
som alla de intervjuade delar är hur de ska kunna ge det andra barnet möjlighet att
utvecklas fritt och normalt, samtidigt som de hoppas att det ska komma att känna ansvar
för sitt syskon.

Ett handikappat barn - inte ett friskt eller välskapt. Vi drabbas av livet, förs in i en kris som innebär en helt annan kamp och oro än vi tänkt oss. Våra fasader och masker faller och vi förs till våra djupaste frågor.
Ur det brustna växer något nytt, ömtåligare och mänskligare.
Det barn vi fick är en personlig berättelse med vinklingar och funderingar kring ett annorlunda barn och handikapp, skola, samhälle, människosyn och människovärde.

Boken vänder sig till alla som är direkt berörda, Föräldrar, anhöriga, de som genom yrke eller engagemang möter dessa barn och vuxna.

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.

BACKGROUND:
A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home.
AIMS:
To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals.
RESULTS:
Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents.
CONCLUSIONS:
Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.

Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.

Avhandling

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

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

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

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.

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.

Metod och målgrupp
Borderline personlighetsstörning kännetecknas av ett genomgående mönster av instabilitet i regleringen av känslor, bristande impulskontroll, relationsproblem och låg självkänsla. I kliniska sammanhang yttrar sig störningen i svårigheter att hantera känslor, impulsiva handlingar och aggressivitet, upprepade tillfällen med självskadande beteenden och självmordsförsök. Patienter med borderline personlighetsstörning har ofta även andra personlighetsstörningar eller sjukdomar, t ex depression, ätstörning, drogmissbruk och ångestsjukdomar. DBT är en omfattande och avancerad form av kognitiv beteendeterapi (KBT) som specifikt utvecklats för kroniskt självmordsbenägna patienter med borderline personlighetsstörning. Metoden har flera inslag, bl a beteendeförändrande tekniker och metoder för att lära sig acceptera känslor. Behandlingen genomförs i flera steg, där självskadande och terapistörande beteenden prioriteras när behandlingen inleds. Ett utmärkande drag för DBT är den omfattande kontakt som behandlingsteamet har med patienten i form av individualterapi, gruppterapi och telefonstöd. Utöver detta ingår handledning och stöd till personal som arbetar med patientgruppen. Det har beräknats att i Sverige har mellan 70 000 och 140 000 personer diagnosen borderline personlighetsstörning. Hur många av dessa som skulle kunna bli aktuella för behandling med DBT är inte klarlagt.

Frågeställning
Kan behandling med DBT ge en minskning av självskadebeteende och drogmissbruk hos personer med borderline personlighetsstörning?

Patientnytta
I sex randomiserade kontrollerade studier har DBT prövats mot annan psykiatrisk behandling. En stor andel kvinnor har ingått i dessa. Behandlingens längd har oftast varit ett år och resultaten varierar mellan studierna, vilket delvis beror på att olika undergrupper har studerats. Resultaten har visat att DBT leder till minskat självskadebeteende och även till färre behandlingsavbrott. Effekten har visat sig kvarstå vid uppföljning upp till två år. Behandlingen medför eventuellt också minskat behov av sjukhusvård, och hos missbrukare minskad droganvändning. Det finns inga bevis för att resultaten av behandlingen skulle påverkas av om patienten även har en missbruksdiagnos. Det finns inga säkra resultat vad gäller de olika behandlingskomponenternas betydelse för utfallet.

Ekonomiska aspekter
Kostnaden för DBT har undersökts i en svensk studie. Den totala årliga vårdkostnaden per patient sjönk från 320 000 kronor året innan behandlingen startade till 210 000 kronor då behandlingen gavs. Det finns ett behov av hälsoekonomiska studier där metodens kostnadseffektivitet undersöks.

SBU:s bedömning av kunskapsläget
Det finns begränsat vetenskapligt stöd för att DBT leder till minskat självskadebeteende och att effekten kvarstår vid uppföljning upp till två år (Evidensstyrka 3)*. Eventuellt medför behandlingen också minskat behov av sjukhusvård samt hos missbrukare minskad droganvändning. DBT förefaller således vara en lovande behandlingsform för patienter med borderline personlighetsstörning. Den behöver dock utprövas för svenska förhållanden och det är angeläget att studier avseende metodens kostnadseffektivitet genomförs.

* Detta är en gradering av styrkan i det vetenskapliga underlag som en slutsats grundas på. Graderingen görs i tre nivåer;
Evidensstyrka 1 = starkt vetenskapligt underlag,
Evidensstyrka 2 = måttligt starkt vetenskapligt underlag,
Evidensstyrka 3 = begränsat vetenskapligt underlag.

Detta är SBU:s sammanfattning och bedömning av kunskapsläget. Den bygger på en rapport som är framtagen av SBU i samarbete med Gerhard Andersson (sakkunnig), professor, psykolog, Institutionen för beteendevetenskap, Linköpings universitet, Margda Wærn (granskare), docent, överläkare, Institutionen för klinisk neurovetenskap, Sahlgrenska akademin vid Göteborgs universitet och Lars-Göran Öst (granskare), professor, psykolog, Psykologiska institutionen, Stockholms universitet.

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

Three high school students with severe disabilities were taught to participate in conversations with a number of peers in a variety of school and community settings utilizing a communication book adaptation. Additionally, during baseline, training, and informed-generalization-partner phases, measures were taken of the degree to which conversation initiation and turn taking generalized to conversation opportunities outside the instructional situation with family members and other nondisabled partners at home and in the community. During the independence phase, when students were participating in sustained conversations with a large number of peers at school, there continued to be breakdowns in conversational turn taking in probe contexts. Utilizing a multiple baseline design across students, probe partners at home and school received the information they needed to support the students with disabilities by conversing via the communication book and utilizing the conversation structure to provide additional prompts. The results showed that the number of balanced conversational turns taken following partner training immediately matched performance with informed peers at school. Finally, the study demonstrated that one family member could provide the necessary information for successful interactions to another without further input from school personnel.

Three high school students with severe disabilities were taught to participate in conversations with a number of peers in a variety of school and community settings utilizing a communication book adaptation. Additionally, during baseline, training, and informed-generalization-partner phases, measures were taken of the degree to which conversation initiation and turn taking generalized to conversation opportunities outside the instructional situation with family members and other nondisabled partners at home and in the community. During the independence phase, when students were participating in sustained conversations with a large number of peers at school, there continued to be breakdowns in conversational turn taking in probe contexts. Utilizing a multiple baseline design across students, probe partners at home and school received the information they needed to support the students with disabilities by conversing via the communication book and utilizing the conversation structure to provide additional prompts. The results showed that the number of balanced conversational turns taken following partner training immediately matched performance with informed peers at school. Finally, the study demonstrated that one family member could provide the necessary information for successful interactions to another without further input from school personnel.

This study used data on 2,453 children age 4 to 17 from the National Survey of Child and Adolescent Well-Being and 5 analytic methods that adjust for selection factors to estimate the impact of out-of-home placement on children's cognitive skills and behavior problems. Methods included ordinary least squares (OLS) regressions and residualized change, simple change, difference-in-difference, and fixed effects models. Models were estimated using the full sample and a matched sample generated by propensity scoring. Although results from the unmatched OLS and residualized change models suggested that out-of-home placement is associated with increased child behavior problems, estimates from models that more rigorously adjust for selection bias indicated that placement has little effect on children's cognitive skills or behavior problems.

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

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

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

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

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

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

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

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

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

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

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

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

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

Twenty-four families participated in counselling for families with a parent with cancer (24 mothers, 17 fathers, and 34 children). Parents who received counselling were significantly more depressed before the counselling than a nonrandomized control group who did not receive counselling, but participated in another part of the project. For the parents, there was a significant decrease in depression and increase in family functioning scores from before to after the intervention. For the children, a significant pre- to post-decrease in depression scores was found. Changes in depression and family functioning were significantly correlated with the degree of counselling contentment. Reasons for seeking counselling were insecurity in relation to the children, problems with communication, high level of conflict, and change of roles. A number of themes appeared when parents and children described what they gained from the counselling: Confirmation in being a 'good-enough' parent, more understanding of emotions and reactions of other family members, more sense of intimacy and cohesion within the family, and normalization of own feelings.

Evaluated an experimental preventive intervention developed for children who perceived their parents as problem drinkers. The 8-session program was designed to improve children's coping, self-esteem, and social competence, and modify alcohol expectancies which were specified as mediators of the effects of parental alcohol abuse on child mental health. Participants were 271 self-selected 4th-, 5th-, and 6th-grade students in 13 schools. The children were randomly assigned to treatment or delayed treatment conditions and the program was given to three successive cohorts of students. A meta-analysis across three different cohorts indicated significant program effects to improve knowledge of the program content and the use of support- and emotion-focused coping behaviors for the full sample. A slightly stronger range of effects was found for a high-risk subsample.

One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent's terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent's competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental interventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not adequately capture changes in non-psychopathological but bereaved distressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be insufficient to allow measurement of meaningful differences between interventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the specifically targeted intervention area that differences can be expected to be significant in adequately resourced families.

Background and Purpose— There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service.

Methods— Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services.

Results— There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information.

Conclusions— The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers.

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

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

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

Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and family, and considered their families as a resource for their empowerment and development of resilience. The study participants' informal networks were composed of only a few individuals who, moreover, were mostly of dissimilar age and also included support professionals. The participants typically described themselves as excluded from others, an experience that was articulated most conspicuously in their narratives about the special schools they were attending.

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

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

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

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

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

Linköping University medical dissertations, 0345-0082 ; 895

BACKGROUND: Family caregivers in palliative care often report feeling
insufficiently prepared to handle the caregiver role. Preparedness has been
confirmed as a variable that may actually protect family caregiver well-being.
Preparedness refers to how ready family caregivers perceive they are for the
tasks and demands in the caregiving role.
AIM: The aim of this study was to explore factors associated with preparedness
and to further investigate whether preparedness is associated with caregiver
outcomes.
DESIGN: This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS: The study took place in three specialist palliative care
units and one haematology unit. A total of 125 family caregivers of patients with
life-threatening illness participated.
RESULT: Preparedness was significantly associated with higher levels of hope and
reward and with a lower level of anxiety. In contrast, preparedness was not
associated with depression or health. Being female and cohabiting with the
patient were significantly associated with a higher level of preparedness. The
relationship to the patient was significantly associated with preparedness, while
social support, place of care, time since diagnosis and age of the patients
showed no association.
CONCLUSION: Feelings of preparedness seem to be important for how family
caregivers experience the unique situation when caring for a patient who is
severely ill and close to death. Our findings support the inclusion of
preparedness in support models for family caregivers in palliative care.
Psycho-educational interventions could preferably be designed aiming to increase
family caregiver's preparedness to care, including practical care, communication
and emotional support.

BACKGROUND:
Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role.
AIM:
The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes.
DESIGN:
This was a correlational study using a cross-sectional design.
SETTING/PARTICIPANTS:
The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated.
RESULT:
Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association.
CONCLUSION:
Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

The present meta-analytic review examined effectiveness of the Incredible Years parent training (IYPT) regarding disruptive and prosocial child behavior, and aimed to explain variability in intervention outcomes. Fifty studies, in which an intervention group receiving the IYPT was compared to a comparison group immediately after intervention, were included in the analyses. Results showed that the IYPT is an effective intervention. Positive effects for distinct outcomes and distinct informants were found, including a mean effect size of d=.27 concerning disruptive child behavior across informants. For parental report, treatment studies were associated with larger effects (d=.50) than indicated (d=.20) and selective (d=.13) prevention studies. Furthermore, initial severity of child behavior revealed to be the strongest predictor of intervention effects, with larger effects for studies including more severe cases. Findings indicate that the IYPT is successful in improving child behavior in a diverse range of families, and that the parent program may be considered well-established.

Background

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

Methods/Design

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

Discussion

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

Trial registration

International Standard Randomised Controlled Trial Number: ISRCTN89673828

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

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

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience ( d = .76 for both), Family Organization ( d = .75), Parental Supervision ( d = .73), Parenting Efficacy ( d = .70), and Positive Parenting ( d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version ( d = .43). (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience (d = .76 for both), Family Organization (d = .75), Parental Supervision (d = .73), Parenting Efficacy (d = .70), and Positive Parenting (d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version (d = .43). (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Den offentliga äldreomsorgen har sedan 1990-talet allt mer koncentrerats till personer med
omfattande hjälp-/stödbehov. Tröskeln till hemtjänst har höjts. Kunskaperna har samtidigt
ökat om omfattningen av den hjälp som anhöriga faktiskt ger och att denna hjälp även kan
innebära stora påfrestningar för de anhöriga. Detta har lett till att staten under senare år har
gjort stora satsningar för att stimulera utvecklingen av kommunernas stöd till anhöriga. Detta
stöd kan vara direkt eller indirekt. Det kan också beskrivas som synligt respektive osynligt.
Det personalen gör för den person som är sjuk eller funktionshindrad innebär, om det utförs
väl, ett indirekt stöd för den anhöriga. Det osynliga stödet handlar mycket om att ha god
kunskap om anhörigas villkor, förståelse av den anhörigas roll i omsorgsarbetet och för den
anhörigas personliga situation samt hur anhöriga betraktas och bemöts. I detta perspektiv är
stöd till anhöriga en angelägenhet inte bara för dem som arbetar med direkt anhörigstöd utan
för hela organisationen
Ett övergripande syfte med detta projekt har varit att utveckla och pröva metoder för att införa
och stärka ett anhörigperspektiv i vård och omsorgsverksamhet för äldre. Projektet har
genomförts tillsammans med personal i Örbyhus hemtjänstdistrikt i Tierps kommun och
personal på Tallgårdens särskilda boende för äldre i Enköpings kommun.
Projektet har genomförts i tre faser.
1. Analys. Syftet var här att få information om hur de berörda verksamheterna fungerar ur ett
anhörigperspektiv, detta som ett underlag för utvecklingsarbetet. Fokusgruppsintervjuer
genomfördes dels vid hemtjänsten och dels vid det särskilda boendet med såväl anhöriga som
personal samt vid ett senare tillfälle en fördjupad gruppintervju med anhöriga.
2. Intervention. En FoU-cirkel genomfördes, sex träffar à tre timmar, med personalgrupperna
vid hemtjänsten respektive det särskilda boendet. I cirkeln deltog även enhetscheferna och
anhörigkonsulent/anhörigrådgivare. Arbetet var processinriktat och gick ut på att utveckla ett
anhörigperspektiv (förståelse och medvetenhet) samt formulera en handlingsplan för ett
förhållningssätt till och samarbete med anhöriga. Ett genomgående inslag i FoU-cirkeln var
gruppdiskussioner och reflektion. Tanken var att deltagarna själva skulle skapa sin
verksamhets anhörigperspektiv och inte serveras någon färdig lösning. Resultaten från
analysfasen var, tillsammans med deltagarnas egna erfarenheter, ett viktigt grundmaterial för
diskussionerna i FoU-cirkeln. Andra inslag var föredrag om olika teman, informationsgranskning,
film, egna intervjuer med någon anhörig samt arbete med att formulera en
handlingsplan. Varje möte dokumenterades.
3 Uppföljning. Uppföljning av projektet gjordes på flera sätt. Cirka tre månader efter
projektets slut genomförde anhörigkonsulenten/-rådgivaren en gruppintervju med sina
respektive personalgrupper. Vid samma besök fick deltagarna också individuellt fylla i en
utvärderingsblankett. Ytterligare ca tre månader senare genomförde projektledningen återigen
en fokusgruppsintervju med samma frågeställning som i analysfasen samt en gruppintervju
kring frågan om hur anhörigperspektivet kan hållas levande och fortsätta att utvecklas.
Efter projektet kan konstateras att arbetsformen fungerat väl och varit uppskattad. Det kanske
mest betydelsefulla inslaget har varit möjligheten för personalen att i gruppdiskussioner
reflektera kring vad de hört i föredrag, sett i film, läst i artiklar och upplevt i egna intervjuer
7
med anhöriga. Flera exempel gavs på förändringar som genomfördes redan medan projektet
pågick. Exempel på det är införande av telefontid för ökad tillgänglighet, förbättrad
information genom pärmsystem, nya rutiner för kontaktmannaskapet samt en utvecklad
relation mellan kontaktmannen och biståndshandläggaren.

Sedan början av 1900-talet har samhällets intresse ökat för den informella, oavlönade hjälp som många människor regelbundet ger till sina närstående. "Anhöriga" har kommit i blickfånget, framför allt anhöriga till äldre. Bakgrunden är bl.a. tilltagande vård- och omsorgsbehov men också en nyvaknad insikt om det informella hjälparbetets betydelse. Men hur ska man egentligen förstå anhörigbegreppet? Vad är det för slags hjälpinsatser som anhöriga utför? Hur vanliga är de och vad består de av?

Författarna har tillsammans 100 års erfarenhet av verksamhet inom området äldre och funktionshindrade och deras familjer.

Rapporten belyser på ett insiktsfullt sätt den komplexitet i anhörigomsorg som ligger i sakens natur och diskuterar dess subtila nyanser.

Denna text är en oväderlig resurs för studenter inom vårdvetenskap, socialt arbete och rehabilitering, för personal som arbetar direkt med anhöriga i sitt dagliga arbete, för beslutsfattare med ansvar för anhörigstöd i kommunerna och för alla andra med intresse för ämnet.

Människan som social varelse kategoriseras på många olika sätt, men detta bortser vi ofta ifrån när det gäller personer med funktionsnedsättning. Därför blir de just personer med funktionsnedsättning, utan kön, utan etnicitet, utan sexualitet, utan klasstillhörighet och så vidare.

Under senare år har begreppet intersektionalitet blivit allt vanligare, framförallt inom de forskningsinriktningar som sysslar med människor som uppfattas som marginaliserade och/eller underordnade. Begreppet söker fånga det samspel mellan olika dimensioner som man menar är nödvändigt för att på allvar förstå situationen för dessa grupper.

Forskningen om funktionshinder har hittills saknat ett sådant perspektiv, något som kan leda till att dess analyser och teorier blir endimensionella och svåra att tillämpa.

Den här antologin är ett första svenskt bidrag till införandet av ett intersektionellt perspektiv i forskningen om funktionshinder. I boken diskuteras hur funktionshinder samspelar med andra dimensioner som kön, klasstillhörighet, sexualitet och etnicitet. Boken ger också exempel på hur metodologiska perspektiv, som kritisk realism och konstruktivism, kan bidra till intersektionell forskning om funktionshinder.

Bara funktionshindrad? vänder sig främst till studenter och forskare inom vård-, beteende- och samhällsvetenskapliga discipliner.

Barn i familjehem är ett kunskapsstöd som riktar sig till personal inom socialtjänsten som arbetar med barn i familjehem och är tänkt att ge kunskap i de olika moment som planeringen av umgänge omfattar. Kunskapsstödet utgår från regelverket inom området och bygger på kunskap från forskning och praktik.

Statens folkhälsoinstitut har undersökt hur många barn i Sverige som växer upp med föräldrar som antingen riskkonsumerar eller missbrukar alkohol, eller som missbrukar narkotika. Resultaten av denna studie, tillsammans med en analys av dessa barns situation, kan återfinnas i denna rapport.

Ett barn som växer upp med en eller två missbrukande föräldrar kan man anta utsätts för stora känslomässiga påfrestningar. Trots detta har det saknats uppgifter om hur vanlig en sådan situation är och någon analys av hur dessa barns situation ser ut. Statens folkhälsoinstitut fick därför i januari 2008 i uppdrag av regeringen att kartlägga frågan.

Analysen har utförts som en systematisk genomgång av vetenskapliga studier, och presenterar en samlad diskussion av resultaten med förhoppningen att kunna erbjuda ett underlag för förebyggande insatser inom området.

Rapporten vänder sig i första hand till beslutsfattare och yrkesverksamma med ansvar för förebyggande arbete inom kommuner, landsting, staten och frivilliga organisationer.

Många barn riskerar att växa upp under svåra familjeförhållanden. Samhället väljer därför ibland att skilja barn från sina föräldrar för att placera dem på institution eller i familjehem.

Författaren presenterar i denna bok aktuell forskning om barn i samhällsvård och ger teoretiska utgångspunkter för förståelsen av relationer, separationer och barns olika sätt att bemästra svårigheter. Vi får under en tioårsperiod följa en grupp barn som på grund av föräldrarnas missbruk tidigt placerats på barnhem och sedan i familjehem. Författaren visar att barn, föräldrar, fosterföräldrar och socialarbetare alla är delaktiga i utfallet av samhällsvården - även om socialtjänsten och samhällsvillkoren anger ramarna.

Boken är avsedd för högskoleutbildning i psykologi, socialt arbete och social omsorg samt för socialsekreterare. Den är av stort intresse för alla som arbetar med utsatta barn och familjer.

Den här rapporten redovisar resultatet av Socialstyrelsens kartläggning av de behov som barn med frihetsberövade föräldrar kan ha samt vilket stöd som finns för dessa barn. Socialstyrelsen har även analyserat om det stöd som finns för barnen motsvarar deras behov och om socialtjänsten har behov av kunskapsstöd om målgruppen.

För de allra flesta barn och unga med funktionsnedsättning är personlig assistans
en insats som fungerar bra och har inneburit en förbättrad livskvalitet.
Med barnets bästa i fokus har dock Socialstyrelsen identifierat ett antal problem
och risker i samband med att barn och unga beviljas personlig assistans.
Ett problemområde gäller hur unga med funktionsnedsättning ska kunna
bli så självständiga som möjligt och hur deras frigörelseprocess kan underlättas.
Det gäller i synnerhet när föräldrar i stor utsträckning är personliga assistenter
åt sina barn. Socialstyrelsen menar att externa assistenter kan ha en
positiv inverkan på möjligheten att bli mer självständig. Även andra insatser,
såsom korttidsvistelse, i kombination med personlig assistans, kan främja
frigörelseprocessen.
Det andra problemområdet handlar om de barn som riskerar att fara illa
eller far illa. Barn med funktionsnedsättning är särskilt utsatta och kan ha
svårt att förmedla hur de egentligen har det. Socialstyrelsen konstaterar att
det finns barn som enbart har anhöriga som assistenter. Det finns också möjlighet
för vårdnadshavare att bli arbetsgivare för sitt barns assistenter och de
tillåts anställa personer i samma hushållsgemenskap. Insynen i de här barnens
levnadsförhållanden blir därmed begränsad och de kan bli isolerade från
samhället i övrigt. I praktiken sker ingen uppföljning av assistansens kvalitet.
För att öka möjligheterna till delaktighet, självständighet och utveckling
för barn och unga med personlig assistans anser Socialstyrelsen det angelä-
get:
• att kommuner i sina bedömningar tar hänsyn till att ungdomar som har
personlig assistans även bör få andra insatser som kan underlätta en frigö-
relseprocess
• att såväl privata som kommunala assistansanordnare ska beakta att ungdomar
som har anhöriga som assistenter även bör ha externa assistenter
• att se över lagändringen där egna arbetsgivare tillåts anställa anhöriga i
samma hushållsgemenskap när det gäller vårdnadshavare som driver sitt
barns assistans
• att man förtydligar hur ansvaret för uppföljningen av assistansens kvalitet
ska se ut

För de allra flesta barn och unga med funktionsnedsättning är personlig assistans en insats som fungerar bra och har inneburit en förbättrad livskvalitet. Med barnets bästa i fokus har dock Socialstyrelsen identifierat ett antal problem och risker i samband med att barn och unga beviljas personlig assistans.

Ett problemområde gäller hur unga med funktionsnedsättning ska kunna bli så självständiga som möjligt och hur deras frigörelseprocess kan underlättas. Det gäller i synnerhet när föräldrar i stor utsträckning är personliga assistenter åt sina barn. Socialstyrelsen menar att externa assistenter kan ha en positiv inverkan på möjligheten att bli mer självständig. Även andra insatser, såsom korttidsvistelse, i kombination med personlig assistans, kan främja frigörelseprocessen.

Det andra problemområdet handlar om de barn som riskerar att fara illa eller far illa. Barn med funktionsnedsättning är särskilt utsatta och kan ha svårt att förmedla hur de egentligen har det. Socialstyrelsen konstaterar att det finns barn som enbart har anhöriga som assistenter. Det finns också möjlighet för vårdnadshavare att bli arbetsgivare för sitt barns assistenter och de tillåts anställa personer i samma hushållsgemenskap. Insynen i de här barnens levnadsförhållanden blir därmed begränsad och de kan bli isolerade från samhället i övrigt. I praktiken sker ingen uppföljning av assistansens kvalitet.

För att öka möjligheterna till delaktighet, självständighet och utveckling för barn och unga med personlig assistans anser Socialstyrelsen det angeläget:

att kommuner i sina bedömningar tar hänsyn till att ungdomar som har personlig assistans även bör få andra insatser som kan underlätta en frigörelseprocess
att såväl privata som kommunala assistansanordnare ska beakta att ungdomar som har anhöriga som assistenter även bör ha externa assistenter
att se över lagändringen där egna arbetsgivare tillåts anställa anhöriga i samma hushållsgemenskap när det gäller vårdnadshavare som driver sitt barns assistans
att man förtydligar hur ansvaret för uppföljningen av assistansens kvalitet ska se ut

Barn med neuropsykiatriska funktionsnedsättningar har ofta flera olika diagnoser. I den användbara handboken Barn med överlappande diagnoser beskrivs de vanligaste diagnoserna och det mest centrala man bör känna till om orsaker, symtom och behandling. Med fokus på möjligheter till utveckling, delar Kutscher med sig av strategier och praktiska tips för att kunna hjälpa barn både hemma och i skolan.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag.

Det saknas kunskap om i vilken omfattning barn och andra anhöriga används istället för professionella tolkar inom offentlig verksamhet i Sverige. Socialstyrelsen gav Linnéuniversitetet i uppdrag att kartlägga i vilken utsträckning barn och andra anhöriga används för att kommunicera med patienter och brukare vid ett urval av enheter inom hälso- och sjukvård och socialtjänst. Författarna svarar själva för innehåll, slutsatser och förslag. Forskargruppen valde i samråd med Socialstyrelsen ut vilka verksamheter webbenkäten i kartläggningen skulle riktas till. Inom socialtjänsten valdes socialsekreterare och handläggare inom ekonomiskt bistånd respektive LSS. Inom hälso- och sjukvården valdes vårdpersonal inom primärvården. Enkäten har kompletterats med fokusgruppsintervjuer med personal inom primärvård, ekonomiskt bistånd och LSS. Resultaten visar att samtliga undersökta verksamheter använder minderåriga barn och andra anhöriga istället för tolk i vissa situationer. Främst sker det vid oplanerade besök. Det är vanligare att vuxna anhöriga används i stället för en utbildad tolk än minderåriga barn. I de fall då mötet med brukaren eller patienten beskrivs som känsligt eller komplicerat, ser personalen oftast till att tillkalla professionell tolk. Inom primärvården är det dock inte ovanligt att låta vuxna anhöriga översätta även vid planerade besök.

Barn i förskole- och skolåldern kan ha utsatts för traumatiska händelser, som t.ex. en närståendes död, misshandel eller sexuella övergrepp. Men barn kan även bli traumatiserade utan att själva vara direkt utsatta. Det kan ske t.ex. genom att barnen bevittnar svåra händelser. Om långvariga problem ska kunna förebyggas måste det finnas vuxna som ger barnen stöd för bearbetningen av det inträffade så att de kan bemöta, uttrycka och integrera de svåra händelserna i sina liv.

Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.

Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.
Alla goda krafter behövs
De som möter föräldrar med missbruksproblem har ett ansvar för att försäkra sig om att barnen får adekvat stöd utifrån sina behov. Det är viktigt att yrkesverksamma inom missbruksvården särskilt uppmärksammar om det finns barn som påverkas av den vuxnas missbruksproblem. Men även de generella verksamheterna som riktar sig till alla barn och unga kan ha betydelse. Trygga och lyssnande vuxna i förskola, skola, fritidsverksamhet och föreningsliv kan bli viktiga stödjande personer och förebilder utanför familjen som kan få en avgörande positiv betydelse. De har också ett ansvar att anmäla till socialtjänsten om det finns oro för att barnet eller den unga far illa. Det är också viktigt att uppmuntra föräldrar att ansöka hos socialtjänsten om man bedömer att barnet eller den unga behöver mer stöd och hjälp.
Om socialtjänsten får en anmälan eller en ansökan, syftar en allsidig utredning, om barnets eller den ungas behov, familjens och nätverkets förutsättningar, till att komma fram till hur barnet eller den unga och familjen bäst ska kunna stödjas. Stödet kan ges inom socialtjänstens ram och av andra aktörer som har speciella verksamheter för dessa barn och unga. Flera ideella organisationer är aktiva på det här området.
Trots att de här barnen och ungdomarna har uppmärksammats särskilt i statliga utredningar och rapporter många gånger under de senaste decennierna, finns det mycket i det samlade stödet till dem som kan förbättras och samordnas. Ett bekymmer är att det saknas tillförlitlig forskning om effekterna av olika insatser.
En fördel med att det finns olika aktörer är att barn och unga i dessa familjer kan nås på olika sätt. Eftersom missbruksproblem fortfarande kan vara skambelagt drar sig många familjer för att söka hjälp. För en del kan det vara lättare att vända sig till en ideell organisation för hjälp och stöd än till myndigheter. Precis som när det gäller andra problem är det viktigt att det finns olika typer av stöd och hjälp till barn och unga som lever med missbruk i familjen.
Läsanvisning
Vägledningen vänder sig till såväl socialtjänsten som andra aktörer, som möter barn och unga i familjer med missbruk. De olika kapitlen har olika relevans för olika aktörer. Vissa upprepningar förekommer.
Kapitlet Att växa upp med missbruk i familjen ger en sammanfattning av vad man vet om omfattningen, konsekvenserna samt risk- och skyddsfaktorer. Det bör vara av intresse för alla läsare.
Kapitlet Att upptäcka att barn lever med missbruk i familjen riktar sig till alla instanser som på ett eller annat sätt kommer i kontakt med barn och unga och deras föräldrar. Det tar upp tecken på barns och ungas svårigheter, olika verksamheters ansvar, vikten av samverkan och anmälningsplikten.
Kapitlet Att bedöma barns och ungas behov riktar sig främst till socialtjänsten, men kan också vara av intresse för andra aktörer som information om socialtjänstens uppgift och utredning.
Kapitlet Stödinsatser handlar om betydelsen av helhetssyn och att insatserna behöver bygga på kunskap om risk- och skyddsfaktorer. Det ger också en beskrivning av olika stöd- och hjälpinsatser, inom socialtjänsten och i andra verksamheter.
I kapitlet Vilka insatser är effektiva? görs en kort genomgång av kunskapsläget när det gäller resultatet av olika insatser och metoder. Detta kapitel är relevant för alla aktörer.
I kapitlet Att dokumentera och följa upp insatser och verksamhet ges råd kring dokumentation och lokala uppföljningar. Syftet är att inspirera till att ständigt förbättra och utveckla den egna verksamheten och samtidigt successivt ge ett allt bättre kunskapsunderlag för valet av bästa möjliga insats för de barn och unga som behöver stöd och hjälp. Det riktar sig till alla utförare – såväl inom socialtjänsten som inom ideell verksamhet och hos andra huvudmän. Slutligen förs ett kortfattat resonemang om kostnadsaspekter av att satsa på stödinsatser för barn och unga vilkas föräldrar har missbruksproblem.

Målgruppen för behovsanalysen är barn och unga med medfödd funktionsnedsättning, som
har behov av planerade och från flera kompetensområden sammansatta åtgärder. Det vill säga
barn och unga som ingår i habiliteringens uppdrag. Exempel på några av de större grupper
som får insatser inom habiliteringen är cerebral pares, ryggmärgsbråck, muskelsjukdomar,
flerfunktionsnedsättning, utvecklingsstörning, missbildningssyndrom och autismspektrumtillstånd.
De behov som finns inom målgruppen är många gånger komplexa och flertalet har
behov av insatser från flera olika delar av hälso- och sjukvården men också av kommunen och
Försäkringskassan. Frågeställningar som behandlas i analysen är information och stöd,
tillgången till insatser, hjälpmedel och specialistläkare, intern och extern samverkan, fast
namngiven kontaktperson, vårdgaranti och likvärdig vård.
Utgångspunkten för svensk folkhälsopolitik och funktionshinderspolitik är principen om alla
människors lika värde och lika rätt, som även återfinns i barnkonventionen och i konventionen
om rättigheter för personer med funktionsnedsättning. Sedan 1997 finns en etisk plattform
med 3 grundprinciper som ska ligga till grund för prioriteringar inom hälso- och sjukvård i
Sverige, människovärdesprincipen, behovs- och solidaritetsprincipen och kostnadseffektivitetsprincipen.
I hälso- och sjukvårdslagen anges 4 prioriteringsgrupper inom
sjukvården, där vård av sjukdomar som utan behandling leder till varaktigt invalidiserade
tillstånd eller för tidig död och habilitering är högt prioriterat.
I nuläget saknas nationella riktlinjer för behovsgruppen. Vad gäller nationella kvalitetsregister
medverkar landstinget i CPUP, uppföljningsprogram av rörelseapparaten för barn och unga
med cerebral pares och i HabQ, kvalitetsregister för habilitering. HabQ startade som ett
kvalitetsregister för barn och unga med cerebral pares, 2011 inkluderades barn med autism.
Målet är att följa alla barn och ungdomar som får insatser genom habiliteringens verksamhet.
I landstinget finns vårdprocessprogram för ryggmärgsbråck och neuropsykiatri, barn och
unga.
Cirka 2 500 personer omfattas av habiliteringens insatser i länet, varav 1 600 är barn och
unga. Inom landstinget finns 3 enheter för barn- och ungdomshabilitering, vilka är olika
uppbyggda och ingår i närsjukvården i respektive länsdel. Det ökade inflödet av barn och
unga med neuropsykiatrisk problematik de senaste åren har inneburit ett ökat tryck på
habiliteringens verksamheter. Enligt verksamhetsföreträdare har det inneburit en viss
förskjutning av resurser till förmån för utredning och behandling inom neuropsykiatri, vilket
inneburit en viss undanträngningseffekt för övriga grupper inom habiliteringen. För att
hantera det ökade behovet av neuropsykiatrisk utredning och behandling har verksamheterna
även tagit till olika lösningar i samverkan med barn- och ungdomspsykiatrin i de tre
länsdelarna.
Barn- och ungdomshabiliteringen har under flera år haft brist på specialistläkare. Hösten 2012
genomförde länets barn- och ungdomshabiliteringar och barnkliniker en riskanalys gällande
bristen på specialistläkare inom barn- och ungdomsneurologi och habilitering. Riskanalysen
har bland annat lett till att 2 strategiska block för ST-läkare med inriktning neurologi inrättas
2014 som en gemensam satsning mellan habiliteringesenheterna och barnklinikerna.
8
Under våren 2013 genomförde brukardialogberedning 3 intervjuer med barn och unga med
medfödda funktionsnedsättningar samt deras föräldrar. Som förälder till ett barn med
komplexa behov är det viktigt att bli bemött på ett bra sätt i kontakterna med hälso- och
sjukvården och andra myndigheter. Det är viktigt att få tillgång till stöd och till relevant
information om diagnosen eller funktionsnedsättningen i ett tidigt skede. Det är också viktigt
att hela familjen har tillgång till olika former av stödinsatser under lång tid.
För många föräldrar tar det lång tid att vänja sig vid den nya situationen och man ägnar
mycket tid åt saker som normalt inte ingår i föräldrarollen. Det kan handla om att barnet långt
upp i ålder behöver lika mycket omsorg och passning som när han eller hon var nyfödd.
Mycket tid och pengar läggs på träning, anpassning av miljön eller att skjutsa till olika
specialaktiviteter. Oräkneliga timmar läggs på att samordna alla kontakter kring barnet med
hälso- och sjukvården, kommunen, assistenter, försäkringskassa och så vidare.
Behovet av habiliterande insatser och hjälpmedel är ofta stort hos barn och unga som har en
funktionsnedsättning. När det gäller habiliterande insatser upplever en del att dessa tenderar
att minska i takt med barnets ålder, trots att behovet är oförändrat. Många upplever även att
det är långa väntetider för utredningar. Flera synpunkter berör brister inom hjälpmedelsområdet.
Att det är långa leveranstider på nya hjälpmedel och att det tar tid att få hjälpmedel
reparerade. Man anser också att hjälpmedelssortimentet är begränsat och att systemet med
särskild prövning är krångligt och byråkratiskt. Ytterligare synpunkter handlar om bristande
tillgång till information om vilka insatser och hjälpmedel som finns att få. Många upplever att
de får söka information själva. Men det är inte lätt att leta efter information när man inte vet
vad man ska leta efter eller fråga om. Sökprocessen blir omständig och tidsödande.
Utbudet av habiliterande insatser och metoder och hjälpmedelssortiment kan se olika ut i olika
landsting och regioner. Något som de intervjuade upplever som orättvist och föräldrarna anser
att alla barn borde ha samma förutsättningar var i landet man än bor. Bristande tillgång till
specialistläkare upplevs som ett annat problem och flera uttrycker en oro för att deras barn
inte ska få tillgång till viktiga insatser som de har behov av.
Utifrån den etiska plattformen är barn och unga med medfödda funkitonsnedsättningar en
högt prioriterad grupp i samhället. Deras behov av god vård i hela vårdprocessen behöver
säkerställas för att minska risken för komplikationer och förbättra den långsiktiga prognosen
och därmed livskvaliteten för barnen.
De utvecklingsområden som identifierats i behovsanalysen finns inom områdena: Information
och stöd, Samverkan/samordning och kontinuitet och Tillgänglig, likvärdig och säker vård.

Barns och ungas hälsa och sociala förhållanden i Sverige är goda, även jämfört med andra välfärdsländer. Detta gäller i synnerhet spädbarn och skolbarn. Exempelvis är barnadödligheten i dessa åldrar bland de absolut lägsta i världen. Barns och ungas fysiska miljö är god ur ett internationellt perspektiv, med låg förekomst av miljörelaterad sjuklighet, till exempel orsakad av luftföroreningar. Sverige ligger dock inte lika mycket i framkant när det gäller de lite äldre barnen. Symtom på ett nedsatt psykiskt välbefinnande (ledsenhet, sömnsvårigheter, huvudvärk med mera) är vanligare bland svenska 15-åringar än i andra länder. Narkotikabruk är mindre vanligt bland svenska unga medan alkoholkonsumtionen är på en genomsnittlig europeisk nivå.

I vårt land har hälsoutvecklingen bland unga inte sett likadan ut som för andra åldersgrupper. Exempelvis har risken att avlida i åldersspannet 15–29 år varit oförändrad de sista 15 åren, när dödligheten har minskat i alla andra åldrar. Självmorden minskar inte bland ungdomar, vilket de gör för andra åldersgrupper. Dödligheten i olycksfall har också varit oförändrad, men minskat de allra senaste åren. Trots det är dödligheten hos unga bland de lägsta i Europa, men för ungdomsgruppen ligger flera länder bättre till.

Sverige – tillsammans med andra skandinaviska länder och Nederländerna – tillhör de länder där ekonomisk utsatthet bland barnfamiljer är minst omfattande. Det är också mycket ovanligt att svenska barn saknar grundläggande nödvändigheter som nya kläder, passande skor, tre mål mat om dagen, böcker eller leksaker med mera. Några förklaringar till detta är att svenska barnfamiljer ofta har två familjeförsörjare, att ensamstående föräldrar arbetar i högre grad och på transfereringar till stöd för barnfamiljer. Av betydelse är också att många välfärdstjänster är avgiftsfria för barn, som exempelvis sjukvård, tandvård, skola och skollunch

På många håll saknas förebyggande och tidiga insatser för barn och ungdomar med psykisk ohälsa. Barnet riskerar att helt bli utan vård, vilket kan få livsavgörande konsekvenser. Anledningen till oklarheterna är att kommuner och landsting ger otydliga uppdrag eller inga uppdrag alls till verksamheterna.

Detta är den sjätte rapporten i projektet "Barn som anhöriga", som genomförs av CHESS vid Stockholms universitet/Karolinska Institutet i samarbete med Nationellt kompetenscentrum anhöriga (Nka) på uppdrag av Socialstyrelsen. Inledningsvis ger rapporten en teoretisk översikt om barn som anhöriga till föräldrar med posttraumatisk stress. Därefter görs en systematisk granskning av den empiriska litteraturen om betydelsen av post-traumatisk stress hos flyktingföräldrar i exil för deras barns hälsa och välbefinnande.

Den 1 januari 2010 infördes en ny lagstiftning angående hälso- och sjukvården ansvar att
ge information, råd och stöd till barn vars föräldrar har en allvarig psykisk eller fysisk
sjukdom inklusive missbruk, eller oväntat avlider. Den här rapporten syftar till att ge
övergripande bild av hur många barn som direkt berörs av denna nya lag.
Rapporten baseras i första hand på anonymiserade analyser av data om sluten vård på
sjukhus från Patientregistret under 1987–2008, och dödsfall i Dödsorsaksregistret under
1973–2008. Registerdata från Statistiska Centralbyrån har använts för att koppla föräldrar
till sina biologiska barn och definiera familjers sociala karaktäristika.
Av de barn som föddes 1987–89 hade 7,8 procent minst en förälder som vårdats inneliggande
på sjukhus på grund av psykisk sjukdom och/eller missbruk av alkohol eller
narkotika under barndomen, d v s innan de hade fyllt arton år. Psykisk sjukdom hos för-
äldern var den vanligaste orsaken som berörde 5,7 procent av barnen, medan alkoholmissbruk
berörde 2,5 procent och narkotikamissbruk 1,5 procent. Under ett enskilt år
handlar det om ca 26 000 barn som har minst en förälder som vårdas på sjukhus grund
av psykisk sjukdom eller missbruk.
Betydligt fler föräldrar har indikatorer på problem med alkohol och narkotika av mildare
grad. Om man också räknar in föräldrar som haft vårdkontakter i öppen vård på
sjukhus på grund av missbruk, eller har dömts i domstol på grund av rattfylleri eller narkotikabrott,
var det totalt 17,0 procent av barnen som berördes. Psykisk ohälsa hos föräldrar
som inte är så allvarlig att den leder till sjukhusvård är också relativt vanlig. I undersökningen
av levnadsförhållanden (ULF) 2007–11 svarade t ex 18,1 procent av föräldrar
till barn i åldern 10–18 år att de led av ängslan, ångest eller oro. Psykofarmakamedicinering
är en annan indikator på psykisk ohälsa hos föräldrar. Under ett enskilt genomsnittligt
år under perioden 2006–8 använde 10,7 procent av mödrar och 5,5 procent av fäder
till barn i åldern 1–18 år ett antidepressivt läkemedel.
Något riktigt bra mått på somatisk (=fysisk) sjukdom hos förälder som är så svår att
deras barn behöver information och/eller stöd finns inte i svenska register. I denna rapport
användes definitionen somatisk sjukdom utan missbruk hos föräldrar som var så
svår att den föranledde minst en veckas inneliggande vård på sjukhus, vilket 12,6 procent
av alla barn födda 1987–89 upplevde före sin artonårsdag. Många fler föräldrar har någon
form av kronisk sjukdom, 28,4 procent av föräldrar till barn i åldern 10–18 år i ULFundersökningen
2007–11 rapporterade t ex minst en kronisk sjukdom.
3,4 procent av alla barn födda 1973–89 hade minst en förälder som avlidit innan deras
artonårsdag. Under ett enskilt år är under perioden 2006–08 berördes ca 3 500 barn. 22
procent av de avlidna fäderna och 12 procent av de avlidna mödrarna hade indikatorer på
alkohol- och/eller narkotikamissbruk. Plötslig oväntad död hos en förälder orsakad av
självmord, våld eller olycka drabbade 600–650 barn varje år. Barn som drabbas av dödsfall
på grund av olyckor och våld hos föräldrar är ofta förskolebarn, medan andra typer av
dödsfall hos föräldrar framför allt drabbar barn i tonåren.
Missbruk och psykisk sjukdom är inte sällan en bidragande orsak till separation mellan
föräldrar. En konsekvens av detta är att många föräldrar som vårdas på sjukhus på grund
av dessa problem inte bor tillsammans med sina barn och att den förälder som bor tillsammans
med barnet ofta är ensamstående. Endast ungefär en tredjedel av fäder som
vårdas på sjukhus på grund av missbruk bor tillsammans med sina barn, mot ungefär
dubbelt så många mödrar.
6
Missbruk, sjukdom och dödsfall hos föräldrar drabbar framför allt barn som befinner
sig i en utsatt social position i det svenska samhället. Det är ungefär tre gånger så vanligt
att föräldrar i barnfamiljer med låg socio-ekonomisk position vårdas på sjukhus för någon
av dessa orsaker jämfört med föräldrar i barnfamiljer med hög socio-ekonomisk position
En social gradient finns också för dödsfall hos föräldrar, där den är större för dödsfall för
fäder än för mödrar, och särskilt stor för plötsliga oväntade dödsfall som orsakas av
självmord, våld och olyckor, dödsfall som framför allt drabbar fäder.
Föräldrar födda utanför Europa vårdas betydligt mer sällan på sjukhus grund av såväl
alkohol som narkotikamissbruk jämfört med föräldrar med svenskt ursprung, men något
oftare än andra på grund av psykisk sjukdom. Föräldrar med annat nordiskt ursprung än
svenskt vårdas oftare för såväl missbruk som psykisk sjukdom, och har och har också en
högre dödlighet än barn till föräldrar med annat svenskt eller utländskt ursprung.
Föräldrars missbruk eller psykiska sjukdom är vanliga orsaker till att barn omhändertas
för samhällsvård i Sverige. För barn som vårdats mer än fem år i samhällsvård har 61
procent åtminstone en förälder som vårdats inneliggande på grund av missbruk eller psykisk
sjukdom, och 23 procent har en förälder som har avlidit före barnen fyllt arton år.
Det stora antalet barn som potentiellt berörs av den nya lagen om information och stöd
till barn som anhöriga i hälso- och sjukvården gör det angeläget med en diskussion om
prioriteringar, och ett utvecklingsarbete kring insatser med olika grad av intensitet som
kan matchas till barn med olika nivåer av behov. Här krävs ett nära samarbete mellan
hälso- och sjukvården och socialtjänsten, och särskilt viktigt är detta för att utveckla insatser
som är ändamålsenliga för de stora behov av information och stöd kring föräldrars
psykiska sjukdom, missbruk och död som rör barn i samhällsvård. Barn till föräldrar med
kroniska fysiska sjukdomar framstår som ett område där fördjupade analyser i andra
datakällor än register är särskilt viktiga för att skapa underlag för det fortsatta utvecklingsarbetet.

Rapport 2 från projektet "Barn som anhöriga" från CHESS, Stockholms universitet/Karolinska Institutet i samarbete med Institutionen för socialt arbete vid Stockholms universitet.

Denna kartläggning av hur det går i skolan för barn som berörs av allvarliga svårigheter hos förälder eller annan vuxen i familjen, har gjorts inom ramen för ett regeringsuppdrag.

Detta är den andra rapporten av tre i projektet "Barn som anhöriga", som genomförs
av CHESS och institutionen för socialt arbete vid Stockholms universitet i samarbete
med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar.
Rapportens syfte är att belysa skolprestationer i grundskolan för barn som är anhö-
riga. Vi har analyserat meritvärde och gymnasiebehörighet från årskurs 9 för 655 000
barn under 2003–2008, med fokus på barn som är anhöriga, det vill säga barn med
föräldrar som har vårdats på sjukhus på grund av missbruk, psykisk eller fysisk sjukdom
eller som har avlidit – då barnen var i åldern 0–15 år.
Bland alla barn i undersökningen var det 10,3 procent av flickorna och 13,0 procent
av pojkarna som lämnade grundskolan utan att ha uppnått gymnasiebehörighet.
Barn till föräldrar med missbruk och/eller psykisk sjukdom utgjorde tillsammans sju
procent av studiepopulationen, och framstod som den grupp bland barn som anhö-
riga som hade de minst tillfredställande skolresultaten. Av pojkar som har en förälder
som missbrukar var det 27 procent (far missbrukar) respektive 30 procent (mor
missbrukar) som lämnade grundskolan utan gymnasiebehörighet, liksom 22 respektive
23 procent av pojkar som har en förälder med psykisk sjukdom, jämfört med enbart
12 procent av pojkar från familjer utan missbruk eller psykisk sjukdom. Något
fler flickor än pojkar uppnådde gymnasiebehörighet även i dessa familjer, men
mönstret i förhållande till föräldrars missbruk och psykiska sjukdom var detsamma
som för pojkar.
Det maximala meritvärdet för en elev som går ut årskurs 9 är 320 och medianvärdet
i denna undersökning var 210. Genomsnittligt var meritvärdet, i jämförelse med
barn i familjer utan känt missbruk eller psykisk sjukdom, 45 meritpoäng lägre hos
barn till missbrukande mödrar, 39 meritpoäng lägre hos barn till missbrukande fäder
och 22 meritpoäng lägre hos barn till någon förälder med psykisk sjukdom.
Missbruk hos föräldrar, men också i viss mån psykisk sjukdom, var vanligare i familjer
som fått försörjningsstöd det år barnet avslutade årskurs 9, där föräldrarna
hade kort skolgång bakom sig och familjer där föräldrarna hade separerat. För att
undersöka betydelsen av detta för barnens skolresultat gjorde vi en analys där vi på
matematisk väg vägde in dessa faktorer tillsammans med föräldrarnas missbruk och
psykiska sjukdom. Det visade sig att så mycket som 85 procent av den ökade risken
för barn till föräldrar med missbruk och 75 procent av den ökade risken för barn till
föräldrar med psykisk sjukdom att inte uppnå gymnasiebehörighet var förknippad
med dessa tre sociala faktorer. Vår analys pekar på att det både handlar om sociala
faktorer som kan ha bidragit till uppkomsten av missbruket respektive den psykiska
sjukdomen (utbildningsbakgrund) och faktorer som troligen oftare är en konsekvens
(försörjningsstöd respektive föräldraseparation) av dessa föräldrafaktorer.
Av barnen i studiepopulationen bodde 63 procent i samma hushåll som bägge sina
biologiska föräldrar det år som de avslutade årskurs 9. Av övriga barn hade 35 procent
föräldrar som separerat och 2,1 procent en förälder som avlidit. Ungefär dubbelt
så många barn till separerade föräldrar och barn i familjer där någon förälder avlidit
lämnade grundskolan utan gymnasiebehörighet, jämfört med barn i kärnfamiljer, där
andelen var drygt åtta procent. Skillnaderna mellan barn till separerade föräldrar och
barn i familjer där någon förälder avlidit var små. Det fanns en viss skillnad mellan
könen när det gällde konsekvenserna av att ha förlorat sin mor i dödsfall, där konse-
6
kvenserna var större för flickor än för pojkar. För bägge könen var dock konsekvenserna
större av att ha förlorat en far än en mor. Sociala faktorer som föräldrars utbildningsbakgrund
och försörjningsstöd bidrog något till skillnaderna i skolresultat
mellan barn i kärnfamiljer och barn i enföräldrahushåll.
Fysisk sjukdom hos föräldrar representerades i denna studie av inflammatorisk
tarmsjukdom, multipel skleros och leukemi. Barn vars mödrar hade inflammatorisk
tarmsjukdom eller multipel skleros hade något lägre meritvärde än genomsnittet,
efter att analysen har justerats för den friska förälderns skolbakgrund, medan någon
negativ effekt av fäders sjukdom på barnens skolprestationer inte noterades. Leukemi
fick exemplifiera cancersjukdom hos föräldrar i undersökningen. Barn till föräldrar
med leukemi med dödlig utgång hade klart sämre skolprestationer än andra barn i
undersökningen, medan några skillnader från genomsnittet överhuvudtaget inte
kunde identifieras hos barn till förälder som överlevde leukemi. Det behövs dock fler
studier av barn till föräldrar som drabbas av cancersjukdom för att bekräfta dessa
resultats relevans för cancer hos föräldrar i allmänhet.
Ett genomgående mönster för samtliga grupper av barn som anhöriga var att för-
äldrars egen utbildningsbakgrund hade större betydelse för barnets skolprestationer
än förälderns sjukdom eller död, och att en lång utbildning hos föräldrar hade en viss
skyddande effekt på skolprestationerna av förälderns sjukdom eller död. Vi ser också
att barn i familjer med försörjningsstöd generellt har ett lågt meritvärde, oavsett om
föräldrarna har indikation på missbruk/psykisk sjukdom eller ej.
Resultaten från denna studie visar att föräldrars missbruk, sjukdom och död inte
sällan påverkar deras barns skolresultat på ett negativt sätt. Yrkesgrupper som möter
dessa barn bör således tänka på att hjälp med skolarbete och läxläsning kan vara en
viktig komponent i ett psykosocialt stöd. När det gäller förebyggande insatser i skolan
pekar studien i första hand på behovet av generella insatser för barn som har svårt att
få stöd i hemmet i skolarbetet oavsett orsak. Där det kan handla om barn som är anhöriga,
men likväl om barn med t ex separerade föräldrar eller föräldrar med kort
egen utbildning.
Studien pekar också på särskilt bristfälliga skolresultat hos barn där föräldrars
sjukdom och död drabbar familjer som har kontakt med socialtjänsten, antingen i
form av försörjningsstöd eller genom att barnen placerats i samhällsvård. De bristfälliga
skolprestationerna hos dessa gör socialtjänsten till en naturlig plattform för interventioner
i syfte att stödja skolarbetet hos barn i familjer med social sårbarhet,
inklusive sjukdom och död hos förälder. Både svensk och internationell forskning
pekar på att det är realistiskt att förvänta sig positiva resultat från denna typ av interventioner.
Det är därför angeläget att metoder för att stödja skolarbetet hos elever i
socialt sårbara familjer får en större spridning bland Sveriges kommuner.

Avhandling

Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution

Avhandling

Bristande stabilitet för barn i familjehem och på institutioner är vanligt och innebär svåra känslor för barnen. Viktoria Skoog har studerat instabilitet i samhällsvård för barn i form av sammanbrott, vilket betyder att ett barns placering avbryts plötsligt och oplanerat samt planerade byten av vårdmiljöer, vilket betyder att socialtjänsten utifrån planering låter ett barn flytta till ett nytt familjehem eller en ny institution

Rapporten vill bidra med kunskap och idéer för yrkesverksamma och bilda underlag när stöd och insatser formas och samverkan utvecklas. Publikationen bygger på forskning som kompletterats med andra studier samt med erfarenheter från yrkesverksamma.

Sykdom, ulykker og kriser har alltid et familieperspektiv. Det minner forfatterne av denne kunnskapsrike boken om på hver side. De stiller det viktigste av alle spørsmål: Er det barn der?
Hvor du enn befinner deg i kretsen rundt en sorg- og kriserammet familie, midt i sentrum der hjemme, som den som tar imot barnet i barnehage eller skole, eller som ansvarlig for behandling og oppfølging av den syke, trenger du denne boken. Aldri før har noen så grundig og rørende oppsummert teoretisk og praksisbasert kunnskap om pårørende barns behov. Det kan ikke sies for ofte, og det står med store bokstaver i boken: Best hjelper det barnet at mamma eller pappa får all den støtte de trenger. Når du har lest denne boken, er du i besittelse av noe helt unikt – en oppdatert empati!