Bibliotek

The United States is engaged in a debate concerning the efficacy of the public school system
and about reforms to address the perceived inadequacies of the current system. This is not a new
debate or a unique time in the history of education, for such debates ebb and flow as
society's understanding of and emphasis on the purposes of education change. We say "purposes"
in plural form intentionally, for despite overheated rhetoric to the opposite, the educational system
has always had multiple purposes, from learning for the sake of knowledge itself to preparation
for employment and citizenship (Pulliam & Van Patten, 1995).
Currently, the debate revolves around the importance of school accountability through,
primarily, standards-based reform (Sykes & Plastrik, 1993). Although the intent of this article
is not to critique this particular type of reform, there has been concern over the possible
conflict between long-held beliefs about the education of students with dis abilities and
standards-based reform, with special attention to the extent to which testing based on state
content and performance standards narrows the curriculum to only core academic content areas
and limits the functionality of the curriculum for students with dis abilities (Committee on
Goals 2000, 1997; Committee on Appropriate Test Use, 1999; Wehmeyer, Lattin, & Agran, in
press).
Individualization is a hallmark of the federal legislation mandating the education of students
with disabilities and best practice in the field. Consequently, there is considerable concern about the
impact of mandates to provide access to the general curriculum on the education of these
students.
We begin this article, which focuses on self-determination and quality of life in special
education services and supports, with reference to these concerns for two reasons. First, we
recognize that educators working with students with disabilities can no longer consider'
curricular and instructional content as separate from the general curriculum, whether it is the
provision of transition services, the delivery of functional or occupational curriculum, or promoting
self-determination to achieve a higher quality of life. Second, we want to examine the issue of
promoting self-determination to enhance quality of life within the context of and as representing
excellent education for all students. Our contention is that a focus on self-determination
provides a means to achieve both objectives.1

Huruvida föräldrar med intellektuell funktionsnedsättning (psykisk utvecklingsstörning) klarar av sitt föräldraskap har alltid ifrågasatts. Den här boken vill visa på vikten av relationen mellan föräldrar och barn när man ska ge hjälp och stöd till föräldrar med kognitiva brister. Forskning rörande barn och barns utveckling har länge varit ett viktigt område inom psykologin. Man är dock inte alltid överens om föräldrars betydelse för barns psykiska utveckling. Författarna visar hur psykologiska insatser kan utformas i familjer med komplex problematik inklusive föräldrar med intellektuell funktionsnedsättning. Boken kan utgöra en referensram för att underlätta samarbetet mellan personal inom pedagogisk, social, psykologisk och medicinsk verksamhet. Boken bör med fördel även kunna användas inom utbildningar för behandlingspersonal inom psykolog- och socionomutbildningar

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.

The purpose of this study was to measure the effects of music therapy-based bereavement groups on mood and behavior of grieving children. Eighteen subjects were assigned to one of two groups: experimental (8 sessions of group music therapy) or control (no group music therapy). All subjects participated in a battery of psychometric tests which measured behavior, mood, and grief symptoms for both pretests and posttests. Statistical analysis indicated a significant difference among subjects in the experimental group for the Behavior Rating Index for children in the home environment and the Bereavement Questionnaire for Parents/Guardians. Although there were no statistically significant differences,mean scores on the Depression Self-Rating Index and the Behavior Rating Index for children in the school environment of the experimental group dropped following treatment. The investigator concluded that participation in music therapy based bereavement groups served to reduce grief symptoms among the subjects as evaluated in the home. Teacher and self-evaluations were less conclusive. Further research studying the effects of music therapy on grieving children is recommended.

Objective. To (1) examine the subjective experience of parenting stress as a mediator between 2 distal stressors (sociodemographic risk and global psychological maladjustment), and examine the parenting of methadone-maintained mothers, and (2) identify maladaptive and adaptive parenting correlates of specific types of parenting stress. Design. We analyzed baseline data from interviews conducted with 74 methadone-maintained mothers who expressed interest in a randomized clinical trial study testing the efficacy of a relational parenting intervention. Baseline measures included questionnaires on maternal psychological maladjustment, parenting stress, parenting problems, and children's maladjustment. Three series of hierarchical linear regressions were conducted to test the mediation model and specificity of associations. Results. Parenting stress mediated the associations between sociodemographic risk and 2 maladaptive parenting domains (aggression and neglect) and between psychological maladjustment and all 5 parenting domains examined (aggression, neglect, affective interactions, limit setting, and autonomy), although correlations were modest. Child-focused stress was associated with higher levels of aggression, limit-setting problems, and restricted autonomy. Stress derived from the mother - child relationship was associated with higher levels of neglect and affective withdrawal. Conclusions. Although preliminary in nature, results of this study indicate the importance of understanding the role of internal mechanisms (e.g., parenting stress) in the parenting processes of addicted women and examining specific correlates of their parenting problems.

A variety of strategies have been used to help children with autism acquire functional communication skills. The Picture Exchange Communication System (PECS) is a unique communication training program that was developed as a means of circumventing some shortcomings associatd with these strategies. A description of the steps within PECS is provided. Long-term group data have indicated that a large proportion of children started on PECS as preschoolers acquire speech. Individual and group data supporting the use of PECS are provided.

A variety of strategies have been used to help children with autism acquire functional communication skills. The Picture Exchange Communication System (PECS) is a unique communication training program that was developed as a means of circumventing some shortcomings associatd with these strategies. A description of the steps within PECS is provided. Long-term group data have indicated that a large proportion of children started on PECS as preschoolers acquire speech. Individual and group data supporting the use of PECS are provided.

Sammanfattning:
Nationellt kompetenscentrum anhöriga (Nka) är en samarbetsresurs för att utveckla stödet till anhöriga som vårdar eller stödjer en närstående. Under 2017 togs ett underlag fram för en nationell anhörigstrategi vilket presenterades för socialdepartementet. Strategin har som utgångspunkt att anhöriga ska ha samma möjligheter som andra medborgare ur ett livsloppsperspektiv. Det innebär att anhöriga ska
- ha valfrihet att bestämma om de vill ta på sig en anhörigvårdarroll.
- ha samma möjligheter till utbildning, arbete och social delaktighet oberoende av kön, etnisk tillhörighet, trosuppfattning, funktionsnedsättning, sexuell läggning och ålder.
Som ett led i ytterligare konkretisering av strategin och de åtgärdsområden som forskningen pekar på har fokusgrupper och intervjuer genomförts med anhöriga, personal och beslutsfattare under hösten/vintern 2017–2018. Totalt har 35 anhöriga, ett trettiotal personal (främst länssamordnare för anhörigstöd) och tio beslutsfattare nåtts av studien. De intervjuade har fått diskutera underlaget i grupp eller reflektera över det enskilt, samt komma med förslag på konkreta främst statliga åtgärder för varje åtgärdsområde. Underlaget har därefter reviderats något utifrån resultatet av studien.

Much has been written about how children of Holocaust survivors tend to absorb the psychological burdens of their parents. But questions remain regarding such parental transmission of Holocaust trauma. What was in fact passed on from parent to child? How does the transmission occur? Do parents invariably transmit and are children equally susceptible? The purpose of this article is to discuss these issues and present a model in which the process of trauma transmission can be understood more consistently. After a brief description of that which was transmitted, four prevalent theories of trauma transmission are described, including the psychodynamic, sociocultural, family system, and biological points of view. Thereafter, some of the mitigating and aggravating factors are presented that are assumed to decrease or increase the risk of children to absorb the trauma of their parents and to develop specific second-generation psychopathology as a result. In conclusion, an integrative view is suggested that attempts to define the possible influence of biological predisposition, individual developmental history, family system and social situation on transgenerational influence of Holocaust trauma.

Abstract
BACKGROUND: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. METHODS: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. DISCUSSION: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. CONCLUSION: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia

Abstract
Aim: To understand the experience of family members of an older relative who has had a fall which required medical attention.

Background: There is abundant bibliography in caregiving, but little is known about the problems faced by caregivers and how family members cope when their older relative has a fall.

Design: Qualitative study that used a symbolic interactionism perspective.

Methods: Twenty-two people with older relatives, who had had a fall and contacted health services in Spain, participated in the study. Data were obtained via written accounts, focus groups, and semi-structured interviews between February 2014 - December 2015. Analysis was guided by grounded theory procedures.

Results: With the fall, dependency becomes a complex issue for the family. To manage a complex dependency is the core issue that emerges from the data analysis. It depicts family efforts to assist their relative in gaining autonomy after a fall, in the best conditions they can provide. They do this with little guidance and support from healthcare professionals.

Conclusions: Guides and protocols for the care of a fragile older person, particularly after a fall, should not only include care but also support to caregivers. Health professionals and especially nurses need to be aware and respond to the family caregivers needs after a fall. To the fall prevention initiatives already in place, it must be added that those who support family members to cope with the care of an older person who has had a fall.

Background: Social relationships (i.e.interpersonal relations with individuals or groups) have been shown to have long- and short-term effects on health outcomes including reduced mortality risk and quality of life among cancer patients. Patients with tumors in the central nervous system (CNS) often suffer cognitive, neuropsychological and functional impairments, causing major support needs among this patient group and their loved ones caring for them, here referred to as informal caregivers. Informal caregiving can be a positive experience, but it may also have negative psychosocial and physical implications for the caregiver. Further, the quality of social relations among cancer patients and their informal caregivers may decrease over time as illness progresses. The Swedish Brain Tumor Association has started an initiative whereby patients and their informal caregivers introduced to drawing so-called caremaps, social network diagrams visualizing both their formal and informal relations. The hypothesis is that caremaps can support communication and coordination, and may even contribute to strengthening social relations. The aim of this study is 1) to explore what type of social relations and resources are important for CNS tumor patients and their informal caregivers and 2) to explore how they reason about the potential benefits and risks of using caremaps to map and possibly share their social relations. Methods: Setting: During the fall of 2018 and early spring 2019 patients and informal caregivers who have been introduced to Caremaps through the Swedish Brain Tumor Association will be invited to participate in focus group discussions or individual interviews to reflect on their social support needs and their impressions of the Caremaps tool. We estimate to involve approximately 10-20 participants. Results: We expect to be able to present our preliminary findings from the workshops, interviews and focus group discussions at the ICIC 2019 conference, highlighting experienced needs and challenges, as well as first impressions of using caremaps. Discussion: An increasing incidence and prevalence of CNS tumor patients calls for innovative solutions to secure adequate care and support for both the patients and their informal caregivers. Identifying an individual's informal and formal care resources may provide a context in which to navigate among the existing and potential support. It may also serve to facilitate the assessment and appreciation of patients' dependence on informal care as well as of caregiver burden and thus caregivers' support needs. Contribution: Our findings will contribute with insights about how social relationships can be mapped and supported and how caremaps can be a tool for CNS tumor patients and their informal caregivers in self-management, which has implications for designing services to enhance patient and informal caregiver self-care and well-being. This research project is conducted in collaboration with the Swedish brain tumor patient association, Karolinska Institutet, Karolinska University Hospital and the Regional Cancer Center Stockholm-Gotland.

Avhandling

Bakgrund. När människor är inkluderade i varandras liv påverkar en förändring av livssituationen hos en person även de övriga personerna som står den nära. Det innebär att när en person drabbas av ohälsa eller sjukdom påverkas även personens familj. Familjens upplevelse av den situation som uppstår i samband med ohälsa kan dessutom negativt påverka familjemedlemmarnas medvetenhet om familjens tillgängliga styrkor och resurser, vilket i sin tur kan påverka familjers kamp för att återfå och bibehålla hälsa. Traditionellt sett har vården fokuserat på att erbjuda stöd på personnivå, och främst då till patienter. De senaste decennierna har dock en tendens uppmärksammats till ökad förståelse för att hela familjen behöver inkluderas i omvårdnaden. Att anamma ett familjecentrerat förhållningssätt – det vill säga, att se och möta familjen som en enhet och som ett system – har visat sig ha flera fördelar utifrån såväl patient- och familje- som sjuksköterskeperspektiv. Detta har medfört en efterfrågan på forskning om hur familjecentrerad omvårdnad kan läras ut och implementeras i den kliniska hälso- och sjukvården. Syfte: Det övergripande syftet med avhandlingen är att belysa erfarenheter av stöd från distriktssköterskor/sjuksköterskor till familjer i ordinärt boende, samt att utvärdera implementering av familjecentrerade samtal.

Barn vars förälder dömts till fängelse klarar sig sämre i skolan och har en ökad risk för egen kriminalitet i tonåren. Som unga vuxna har de svårare att etablera sig på arbetsmarknaden, visar en ny IFAU-rapport.

Rapporten är en sammanfattning av IFAU Working paper 2019:24

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.

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.

Argues that the well-documented sex difference in depression may be due to a sex difference in susceptibility, in precipitating factors, or in both. Data from a large mental health survey (2,515 White over-18 residents of 2 cities) were used to study precipitating factors. It was found that women were exposed more often to more of the factors that relate to depression; with a few exceptions, the factors related to depression similarly for men and women. Matching on these factors did not eliminate the sex difference in depression. This suggests that there may be a sex difference in susceptibility. Current theories of depression are incorporated into a sequential model of how learned factors might contribute both to susceptibility and to the sex difference. (14 ref) (PsycINFO Database Record (c) 2016 APA, all rights reserved)

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

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)

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)

Children experiencing difficulties in their peer relations have typically been identified using external sources of information, such as teacher referrals or ratings, sociometric measures, and/or behavioral observations. There is a need to supplement these assessment procedures with self-report measures that assess the degree to which the children themselves feel satisfaction with their peer relationships. In this study, a 16-item self-report measure of loneliness and social dissatisfaction was developed. In surveying 506 third- through sixth-grade children, the measure was found to be internally reliable. More than 10% of children reported feelings of loneliness and social dissatisfaction, and children's feelings of loneliness were significantly related to their sociometric status. The relationship of loneliness and sociometric status to school achievement was also examined.

A 4-year prospective study was undertaken of the families of 137 newly referred English speaking psychiatric patients with children at home aged under 15 years. The group comprised a representative sample of such patients living in one inner London borough. Teacher questionnaires were obtained yearly for all children of school age in the families, and for age-, sex- and classroom-matched controls. Detailed standardized interviews were undertaken yearly with parent-patients and with their spouses. A comparison was also made with a control group of families in the general population with 10-year-old children. Patients' families differed in terms of a higher rate of psychiatric disorder in spouses and a much higher level of family discord. Both parental mental disorder and marital discord tended to persist over the 4-year period, but persistence of both was much more marked when the parent had a personality disorder. The children of psychiatric patients had an increased rate of persistent emotional/behavioural disturbance, which tended to involve disorders of conduct. The psychiatric risk to the children was greatest in the case of personality disorders associated with high levels of exposure to hostile behaviour. Boys showing temperamental risk features were most vulnerable to the ill-effects associated with parental mental disorder.

A comparative method of studying the biological bases of personality compares human trait dimensions with likely animal models in terms of genetic determination and common biological correlates. The approach is applied to the trait of sensation seeking, which is defined on the human level by a questionnaire, reports of experience, and observations of behavior, and on the animal level by general activity, behavior in novel situations, and certain types of naturalistic behavior in animal colonies. Moderately high genetic determination has been found for human sensation seeking, and marked strain differences in rodents have been found in open-field behavior that may be related to basic differences in brain neurochemistry. Agonistic and sociable behaviors in both animals and humans and the trait measure of sensation seeking in humans have been related to certain common biological correlates such as gonadal hormones, monoamine oxidase (MAO), and augmenting of the cortical evoked potential.

The monoamine systems in the rodent brain are involved in general activity, exploratory behavior, emotionality, socialization, dominance, sexual and consummately behaviors, and intracranial self-stimulation. Preliminary studies have related norepinephrine and enzymes involved in its production and degradation to human sensation seeking. A model is suggested that relates mood, behavioral activity, sociability, and clinical states to activity of the central catecholamine neurotransmitters and to neuroregulators and other transmitters that act in opposite ways on behavior or stabilize activity in the arousal systems. Stimulation and behavioral activity act on the catecholamine systems in a brain–behavior feedback loop. At optimal levels of catecholamine systems activity (CSA) mood is positive and activity and sociability are adaptive. At very low or very high levels of CSA mood is dysphoric, activity is restricted or stereotyped, and the organism is unsocial or aggressively antisocial. Novelty, in the absence of threat, may be rewarding through activation of noradrenergic neurons.

The mental health of 796 Palestinian children living in the occupied West Bank and Gaza Strip was assessed in terms of reported psychological status and behavioral symptoms. Results, interpreted within the context of the 1987 uprising (Intifada), indicate that exposure to political and military violence may be associated with the onset of conduct problems and fears, although active participation in the conflict may enhance self-esteem and shield children from development of psychological symptoms.

The author draws extensively on the published research findings in child health psychology, and also on her own experience of working with pediatric medical and nursing staff. The emphasis throughout her book is on coping, and helping families to cope, with the stresses imposed by chronic childhood illness. Frequent hospital admissions, pain and its evaluation and control, adjustment and sources of support, communication, education and programs for intervention, all of these topics are discussed sensitively and with authority.

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)

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.

present a set of indices of disorganization and disorientation in Strange-Situation [M. Ainsworth] behavior that will permit the identification of D [disorganized/disoriented response] patterning by other workers / begin with a review of previous studies reporting difficulties in placing ("forcing") every infant in a given sample into one of the three traditional categories [secure, insecure-avoidant, and insecure-ambivalent/resistant]
discuss (a) the process by which we developed and obtained reliability for the set of classification criteria to be presented, (b) the classification criteria themselves, and (c) some theoretical issues in the modification of classification systems (PsycINFO Database Record (c) 2016 APA, all rights reserved)

The utility of the Center for Epidemiologic Studies Depression Scale for Children (CES-DC), a modified version of the Center for Epidemiologic Studies Depression Scale, was explored in a sample of children, adolescents, and young adults at high or low risk for depression according to their parents' diagnosis. Proband parents were participants in the Yale Family Study of Major Depression who had children between the ages of 6 and 23 years. Diagnostic and self-report information on offspring was collected over two waves, spaced 2 years apart, from 1982 to 1986. Support was obtained for the reliability and validity of the CES-DC as a measure of depressive symptoms, especially for girls and for children and adolescents aged 12-18 years. Children with major depressive disorder or dysthymia, as defined by the Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM-III), had elevated scores in comparison with all other respondents. The CES-DC lacked diagnostic specificity; children with a range of current DSM-III diagnoses had elevated scores on the measure. A cutoff point of 15 and above for screening children and adolescents for current major depressive disorder or dysthymia may be optimal. Depressed respondents scoring below this cutoff point (false negatives) showed better social adjustment than true positives; nondepressed respondents scoring above this cutoff point (false positives) showed worse adjustment than true negatives. Factor analysis was used to construct an abbreviated, four-item version of the scale. The abbreviated scale was shown to be useful as a screen.

The impact of parent-caring on the lives of 30 Caucasian women was studied using data from: 1) intensive interviews, 2) participant observations, and 3) the OARS Multidimensional Functional Assessment. Analysis of the qualitative data identified two caregiving modalities: 1) care provision and 2) care management. The social and behavioral precedents and consequences of entering the careprovider or manager role were identified. The costs of caregiving were much greater for providers than managers.

En blandning av fakta, filosofi och poesi. Enkelt med få men väl vägda ord och vackra bilder berättas om början och slutet, och allt däremellan, livet. Att det är lika för allt levande, även om man är en blomma, en insekt, en fågel eller en människa, allas liv har en början och ett slut. Allt har en livtid, kort eller lång. Från 5-6 år.

Administered the revision of the Children's Manifest Anxiety Scale (RCMAS) to 4,972 6–19 yr olds from 13 states representing all geographic regions of the US. Norms are reported for White males, White females, Black males, and Black females separately at each age level for the total anxiety scale, 3 subscales of anxiety, and a lie scale. MANOVA demonstrated performance on the RCMAS to be a complex function of these factors. Reliability was satisfactory for all groups except Black females below the age of 12 yrs. (17 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)

This is an introductory report for the Brief Symptom Inventory (BSI), a brief psychological self-report symptom scale. The BSI was developed from its longer parent instrument, the SCL-90-R, and psychometric evaluation reveals it to be an acceptable short alternative to the complete scale. Both test--retest and internal consistency reliabilities are shown to be very good for the primary symptom dimensions of the BSI, and its correlations with the comparable dimensions of the SCL-90-R are quite high. In terms of validation, high convergence between BSI scales and like dimensions of the MMPI provide good evidence of convergent validity, and factor analytic studies of the internal structure of the scale contribute evidence of construct validity. Several criterion-oriented validity studies have also been completed with this instrument.

Clinical and experimental studies of children of survivors of the Nazi Holocaust are evaluated critically. Methodological inadequacies are identified, questions bearing on the interpretation of results are raised, and suggestions for future research directions are offered.

A master of family therapy, Salvador Minuchin, traces for the first time the minute operations of day-to-day practice. Dr. Minuchin has achieved renown for his theoretical breakthroughs and his success at treatment. Now he explains in close detail those precise and difficult maneuvers that constitute his art. The book thus codifies the method of one of the country's most successful practitioners.

It is believed that 28 million children nationally are affected adversely by parental alcoholism. To help them, we must identify them. A screening tool was developed and tested to identify adolescents experiencing difficulties because of a parents's drinking problem. The single question, "Has the drinking of either parent created any problem for you?", was given in a medical screening inventory at a teenage clinic. This was followed by an eight-question semistructured interview. Of the 37 patients screened, 57% had high interview scores, suggesting that a parent's drinking had created a problem for them. Their substantiating information was consistent with the literature describing the effects of alcoholics on their children. In contrast, those with low or medium scores consistently reported no problem because of a parent's drinking. High scorers had nearly twice as many somatic symptoms and health concerns as those not reporting a problem with parental drinking. Based on the high percentage of adolescents adversely affected by a parental drinking problem and the patients' responsiveness to specific direct questions, this type of semistructured interview may be useful as a teenage intake interview in a variety of settings. Such screening could allow early referral and interventions to treat the family in which there is alcohol abuse, this promoting healthier psychosocial development. This might also decrease the adolescent's risk of abusing alcohol. Such screening may help the physician to place vague, somatic complaints in a more meaningful perspective. Our method is a quick, brief screen for a common but easily overlooked, potentially serious family problem.

I Dina ögon handlar om hur Thomas tidigt anar något annorlunda hos sin dotter. Han söker hjälp i jakten på en lösning hos myndigheter men får istället i flera år kämpa mot det han behöver minst - skuld. Den oförstående omgivningen och bristen på stöd blir till slut övermäktig och det för hans dotter ifrån honom. Trots dotterns frånvarao finns känslorna ständigt närvarande; sorg, ilska och frustration men även stolthet, glädje och hopp. Thomas Nybom är pappa till fyra barn varav Shara är den näst äldsta. Han bor utanför Norrköping och har arbetat med personer med neuropsykiatriska diagnoser i tjugo år och handleder även inom ämnet NP. År 2009 startade han lokalföreningen NP Vision, som är en anhörigförening för personer med neuropsykiatriska diagnoser.

Abstract

Abstract

Objective: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

Method: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

Results: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

Significance of results: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

The purpose of this study was to elucidate conditions at all system levels in a specific health care service to develop practices for identification of children as relatives. An interactive research approach with the intention to create mutual learning between practice and research was used. The participating health care service cared for both clinic in- and outpatients with psychiatric disorders. Health care professionals from different system levels (micro, meso, macro) participated, representing different professions. At the first project meeting, it was obvious that there was no systematic approach to identify children as relatives. At the micro level, activities such as a pilot survey and an open house activity were carried out. At the meso level, it was discussed how to better support collaboration between units. At the management (macro) level, it was decided that all units should appoint at least one child agent, with the aim to increase collaboration throughout the whole health care service. To change focus, in this case from only parents to inclusion of children, is an important challenge faced by health care services when forced to incorporate new policies and regulations. The new regulations contribute to increased complexity in already complex organizations. This study highlights that such challenges are underestimated.

Objectives: Parental death during childhood has been linked to increased mortality and mental health problems in adulthood. School failure may be an important mediator in this trajectory. We investigated the association between parental death before age 15 years and school performance at age 15 to 16 years, taking into account potentially contributing factors such as family socioeconomic position (SEP) and parental substance abuse, mental health problems, and criminality.

Methods: This was a register-based national cohort study of 772,117 subjects born in Sweden between 1973 and 1981. Linear and logistic regression models were used to analyze school performance as mean grades (scale: 1-5; SD: 0.70) and school failure (finished school with incomplete grades). Results are presented as β-coefficients and odds ratios (ORs) with 95% confidence intervals (CIs).

Results: Parental death was associated with lower grades (ORs: -0.21 [95% CI: -0.23 to -0.20] and -0.17 [95% CI: -0.19 to -0.15]) for paternal and maternal deaths, respectively. Adjustment for SEP and parental psychosocial factors weakened the associations, but the results remained statistically significant. Unadjusted ORs of school failure were 2.04 (95% CI: 1.92 to 2.17) and 1.51 (95% CI: 1.35 to 1.69) for paternal and maternal deaths. In fully adjusted models, ORs were 1.40 (95% CI: 1.31 to 1.49) and 1.18 (95% CI: 1.05 to 1.32). The higher crude impact of death due to external causes (ie, accident, violence, suicide) (OR: -0.27 [90% CI: -0.28 to -0.26]), compared with natural deaths (OR: -0.16 [95% CI: -0.17 to -0.15]), was not seen after adjustment for SEP and psychosocial situation of the family.

Conclusions: Parental death during childhood was associated with lower grades and school failure. Much of the effect, especially for deaths by external causes, was associated with socially adverse childhood exposures.

Background: Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer.

Methods: Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz.

Results: Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'.

Conclusion: Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.

Aim: To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent.

Design: Integrative literature review study.

Methods: Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl.

Results: Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Background: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss.

Methods: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression.

Results: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent.

Conclusion: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

Purpose: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up.

Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety.

Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively.

Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.

This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

Aim: To examine the extent to which structured action plans, i.e. collaborative individual plans (CIPs), used by professionals within the psychiatric care, substance use treatment services and social services, evaluate if clients have children, and if professionals take actions if clients do have children. According to Swedish law, a CIP should be established when a client is in need of care from more than one branch of the care network. Professionals who meet adult clients have the opportunity to identify children at risk. Including a question in the CIP on whether a client has a child is a good approach to identify children in need of support.Methods: Cross-sectional data from professionals were collected prior to attending a three-day CIP course. A total of 705 individuals (n = 797 invited) responded to the questionnaire.Results: More than 90% reported that they meet clients for whom a CIP should be established, and 52.6% of these (n = 346) were aware of an existing CIP template within their organization. Approximately 30% (n = 203) reported that this template included an item on whether the client has one or more children. Of these, a majority reported ensuring that the children receive adequate care (83.3%, n = 169), and that they follow up on the receipt of such care (62.6%, n = 125).Conclusions: The care network needs to implement CIPs to a higher degree, and CIP templates need to include items about the clients' children to ensure that children at risk are identified and thereby can receive adequate support.

Background: Depending on the definitions used, between 5 and 20 % of all Swedish children grow up with at least one parent suffering from alcohol problems, while 6 % have at least one parent who has received inpatient psychiatric care, conditions that may affect the children negatively. Nine out of ten Swedish municipalities therefore provide support resources, but less than 2 % of these children are reached by such support. Delivering intervention programs via the Internet is a promising strategy. However, web-based programs targeting this at-risk group of children are scarce. We have previously developed a 1.5-h-long web-based self-help program, Alcohol & Coping, which appears to be effective with regards to adolescents' own alcohol consumption. However, there is a need for a more intense program, and therefore we adapted Kopstoring, a comprehensive Dutch web-based psycho-educative prevention program, to fit the Swedish context. The purpose of the program, which in Swedish has been called Grubbel, is to strengthen protective factors, such as coping skills and psychological well-being, prevent the development of psychological disorders, and reduce alcohol consumption.

Methods/design: The aim of the current study is to evaluate the effectiveness of Grubbel, which targets 15-25-year-olds whose parents have substance use problems and/or mental illness. Specific research questions relate to the participants' own coping strategies, mental health status and substance use. The study was initiated in the spring of 2016 and uses a two-armed RCT design. Participants will be recruited via social media and also through existing agencies that provide support to this target group. The assessment will consist of a baseline measurement (t0) and three follow-ups after six (t1), 12 (t2), and 24 months (t3). Measures include YSR, CES-DC, Ladder of Life, Brief COPE, AUDIT-C, and WHOQOL-BREF.

Discussion: Studies have revealed that the majority of children whose parents have substance use or mental health problems are not reached by the existing support. Thus, there is an urgent need to develop, implement, and evaluate novel intervention programs and disseminate successful programs to a broader audience. This study, investigating the effects of a web-based intervention, therefore makes an important contribution to this field of research.

To explore the difficulties parents face when understanding their children's reactions to parental cancer and parents' reactions to their children's perceived needs.

Qualitative interviews with cancer patients and their partners.

Eleven patients and seven partners took part. Their children were aged 1-15 years. Eight patients were mothers and cancer was diagnosed median 28 (7-104) months ago.

Inductive analysis with systematic text condensation.

Parents were groping in the dark when understanding their children's reactions. They observed signs of distress in their children, but often avoided communication about emotional reactions. We suggest parental difficulties in containing own and children's emotions as an important cause for this situation.

Parents lacked relevant support offers for the family as a unit. Identification of children's difficulties cannot be based on parental evaluation alone. We suggest family support as part of standard care for patients with minor children.

An illness or injury sustained by a family member affects all family members. It is consequently important that a child’s need to be involved in a family member’s care is clearly recognized by healthcare professionals. The aim of this study was to describe healthcare professionals’ approaches to children as relatives of a parent being cared for in a clinical setting. A web-based study-specific questionnaire was sent and responded to by 1052 healthcare professionals in Sweden. Data were analysed using descriptive statistics and qualitative analysis. The results show that guidelines and routines are often lacking regarding involving children in the care of a parent. Compared to other areas, psychiatric units seem to have enacted routines and guidelines to a greater extent than other units. The results indicate that structured approaches based on an awareness of the children’s needs as well as a child-friendly environment are vital in family-focused care. These aspects need to be prioritized by managers in order to support children’s needs and promote health and wellbeing for the whole family.

Ort, förlag, år, upplaga, sidor

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.

Objective: The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Methods: Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires. Self-esteem was measured with the Rosenberg Self-Esteem Scale. Symptoms of anxiety and depression were measured with the Hospital Anxiety and Depression Scale. Univariate and multiple linear regression models were used to analyze the associations. Result: Self-esteem was significantly associated with symptoms of anxiety and depression at baseline and at follow-up. Conclusion: This study reveals that self-esteem is a valuable explanatory variable, and that it is associated with both symptoms of anxiety and depression in bereavement. This new knowledge could be used to guide future support to parentally bereaved young adults.

OBJECTIVE: To determine the association between parental mental illness and the risk of injuries among offspring. DESIGN: Retrospective cohort study. SETTING: Swedish population based registers. PARTICIPANTS: 1 542 000 children born in 1996-2011 linked to 893 334 mothers and 873 935 fathers. EXPOSURES: Maternal or paternal mental illness (non-affective psychosis, affective psychosis, alcohol or drug misuse, mood disorders, anxiety and stress related disorders, eating disorders, personality disorders) identified through linkage to inpatient or outpatient healthcare registers. MAIN OUTCOME MEASURES: Risk of injuries (transport injury, fall, burn, drowning and suffocation, poisoning, violence) at ages 0-1, 2-5, 6-9, 10-12, and 13-17 years, comparing children of parents with mental illness and children of parents without mental illness, calculated as the rate difference and rate ratio adjusted for confounders. RESULTS: Children with parental mental illness contributed to 201 670.5 person years of follow-up, while children without parental mental illness contributed to 2 434 161.5 person years. Children of parents with mental illness had higher rates of injuries than children of parents without mental illness (for any injury at age 0-1, these children had an additional 2088 injuries per 100 000 person years; number of injuries for children with and without parental mental illness was 10 235 and 72 723, respectively). At age 0-1, the rate differences ranged from 18 additional transport injuries to 1716 additional fall injuries per 100 000 person years among children with parental mental illness compared with children without parental mental illness. A higher adjusted rate ratio for injuries was observed from birth through adolescence and the risk was highest during the first year of life (adjusted rate ratio at age 0-1 for the overall association between any parental mental illness that has been recorded in the registers and injuries 1.30, 95% confidence interval 1.26 to 1.33). Adjusted rate ratios at age 0-1 ranged from 1.28 (1.24 to 1.32) for fall injuries to 3.54 (2.28 to 5.48) for violence related injuries. Common and serious maternal and paternal mental illness was associated with increased risk of injuries in children, and estimates were slightly higher for common mental disorders. CONCLUSIONS: Parental mental illness is associated with increased risk of injuries among offspring, particularly during the first years of the child's life. Efforts to increase access to parental support for parents with mental illness, and to recognise and treat perinatal mental morbidity in parents in secondary care might prevent child injury.

Aim: To increase understanding of the consequences of growing up with substance-abusing parents, including how this can influence the experience of becoming a parent.

Methods: In-depth interviews were conducted with 19 parents who had participated in an Infant and Toddler Psychiatry Unit intervention programme and who had experienced substance-abusing parents in their family of origin. Directed qualitative content analysis was used to analyse the data.

Results: Analysis of the interview material revealed both a high incidence of parentification and a conspiracy of silence concerning the substance abuse that helped generate symptoms of cognitive dissonance in the children. As parents they experience a high degree of inadequacy, incompetence and stress.

Conclusion: A majority of the children who had grown up with substance-abusing parents responded by taking a parenting role for themselves, their siblings and their parents. These children, often well-behaved and seemingly competent, need to be identified and offered support as they risk developing significant psychological and emotional difficulties that can extend into adulthood. They form an extra sensitive group who may need special support up to and including the time when they become parents themselves. This finding underlines the importance of further research on parenting among those who have grown up with abusive parents.

Despite the evidence of unmet support needs among young people who have lost a parent to cancer, only a few support group initiatives have been reported. This observational prospective study explored the psychosocial well-being of young people who participated in support groups at a Swedish specialist palliative care setting. On three occasions, 29 participants, aged 16-28 years, answered questionnaires covering characteristics of the participants, circumstances of the losses, psychosocial well-being of the young people, and their own assessment of the support groups. The support groups attracted mostly young women who were often unprepared for the loss. The living arrangements differed between younger and older participants; however, the loss-related variables did not differ. Significant positive changes were found regarding a sense of meaning in their future life and life satisfaction. The helpfulness of the group was assessed as high/very high and the group brought a valuable fellowship with others in a similar situation. Universality and beneficial interactions were reported and strengthened psychosocial well-being developed over time. This change, according to the young people themselves, may be attributed to the group support. The findings are useful for planning interventions to support young people in bereavement in order to enhance their psychosocial well-being.

Background: Children of parents with mental illness are a vulnerable group, but their numbers and their exposure to adversity have rarely been examined. We examined the prevalence of children with parents with mental illness in Sweden, trends in prevalence from 2006 to 2016, and these children's exposure to socioeconomic adversity.

Methods: We did a population-based cohort study among all children (aged <18 years) born in Sweden between Jan 1, 1991, and Dec 31, 2011, and their parents, followed up between Jan 1, 2006, and Dec 31, 2016. We included children who were identified in the Total Population Register and linked to their birth parents, excluding adopted children and those with missing information on both birth parents. We used a comprehensive register linkage, Psychiatry Sweden, to follow up for indicators of parental mental illness and socioeconomic adversity. Marginal predictions from a standard logistic regression model were used to estimate age-specific, 3-year period prevalence of parental mental illness and trends in prevalence for 2006-16. Using cross-sectional data on each child, indicators of socioeconomic adversity were compared between children with and without concurrent parental mental illness using logistic regression.

Findings: Of 2 198 289 children born in Sweden between Jan 1, 1991, and Dec 31, 2011, we analysed 2 110 988 children (96·03% of the total population). The overall prevalence of children with diagnosed parental mental illness between 2006 and 2016 was 9·53% (95% CI 9·50-9·57). This prevalence increased with age of the child, from 6·72% (6·65-6·78) of the youngest children (0 to <3 years) to 10·80% (10·73-10·89) in the oldest (15 to <18 years). The prevalence of diagnosed parental mental illness increased from 8·62% (8·54-8·69) in 2006-09 up to 10·95% (10·86-11·03) in 2013-16. Children with any type of parental mental illness had markedly higher risk of socioeconomic adversity, such as living in poorer households or living separately from their parents.

Interpretation: Currently, 11% of all Swedish children have a parent with a mental illness treated within secondary care. These children have markedly higher risk of broad socioeconomic adversity than do other children. There is a need to understand how socioeconomic adversity and parental mental illness influence vulnerability to poor life outcomes in these children.

Funding: European Research Council, National Institute for Health Research, Region Stockholm, and the Swedish Research Council.

Introduction: To estimate the prevalence of children with problem drinking parents in Sweden and the extent to which they have an elevated risk of poor health, social relationships and school situation in comparison with other children.

Methods: Survey with a nationally representative sample of Swedish youth aged 15-16 years (n = 5576) was conducted in 2017. A short version of The Children of Alcoholics Screening Test (CAST-6) was used to identify children with problem drinking parents. Health status, social relations and school situation were measured by well-established measures. Overall prevalences for girls and boys were presented as well as relative risks (RR) of harm for children with problem drinking parents compared with other children.

Results: A total of 13.1% of the sample had at least one problem drinking parent during adolescence according to CAST-6-a higher proportion of girls (15.4%) than boys (10.8%). This group had an elevated risk of poor general health as well psychosomatic problems compared with other children (RR 1.2-1.9). They were also more likely to use medication for depression, sleeping difficulties and anxiety (RR 2.2-2.6). Their social relations were also worse especially with their father (RR 3.1) and they had more problems at school (RR 2.6).

Discussion and conclusions: The risk of problems related to parental drinking goes beyond the most severe cases where parents have been in treatment for their alcohol problem. This is important knowledge since the majority of problem drinkers never seek treatment and the major part of parental problem drinking is found in population samples.

Previous studies have shown that parental death influences health and mortality in bereaved offspring. To date, few studies have examined whether exposure to parental bereavement in childhood is associated with suicidality later in life. The aim of the present research was to investigate whether parental death during childhood influences self-inflicted injuries/poisoning in young adulthood. A national cohort born during 1973-1982 (N = 871,402) was followed prospectively in the National Patient Discharge Register from age 18 to 31-40 years. Cox regression analyses of proportional hazards, with adjustment for socio-demographic confounders and parental psychosocial covariates, were used to test hypotheses regarding parental loss and hospital admission due to self-inflicted injuries/poisoning. Parental deaths were divided into deaths caused by (1) external causes/substance abuse and (2) natural causes. Persons who had lost a parent to an external cause/substance abuse-related death had the highest risk of being admitted to a hospital for a self-inflicted injury/poisoning; HRs 2.03 (1.67-2.46) for maternal death and 2.03 (1.84-2.25) for paternal death, after adjustment for socio-demographic confounders and risk factors among surviving parents. Risks were also increased for parental death due to natural causes, but at a lower level: 1.19 (1.01-1.39) and 1.28 (1.15-1.43), respectively. Losing a father before school age was associated with a higher risk of hospital admission for a self-inflicted injury/poisoning than was loss at an older age for both genders. Maternal loss before school age was associated with a higher risk only for men, particularly maternal death by natural causes (p < 0.01).

Background: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden.

Design and methods: Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed.

Findings: Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents' behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support.

Conclusions: The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members' access to relevant care and support for themselves.

Personal assistance, since its implementation in 1993, has been shown to provide support for persons with severe functional disabilities in their everyday life, ensuring inclusion in societal roles such as working life. Personal assistance (PA) may also provide support in parenting; however, with the right to PA becoming increasingly questioned in Sweden, parents with disabilities have varying experiences of receiving support for their role as parents. Experiences also differ in regard to how access to a personal assistant is important to their child's daily life. The aim of this article is to shed light on the meaning of PA for parents and children in everyday life, especially when PA is reduced or even withdrawn. Eleven parents who have had or presently have PA were interviewed. The results show that parents describe that PA help them to fullfil their parental roles although the support could be more flexible to the needs of parents and their children. In situations when PA has been denied, children are negatively impacted and some children act by taking on responsibilities for the care of their parent. In conclusion; childrens' perspective of their family life needs to be taken in consideration when assessing the rights to PA.

This paper concerns children's and young people's accounts about the situation when one parent is misusing substances but the other parent is not. Earlier research on the other parent is scarce and fragmented. The aim of the paper is to discuss the role of the other parent from a child perspective. The results are based on qualitative analysis of interviews with 23 children who had one parent who misused substances while the other parent, according to public knowledge, did not. The main finding is that the other parent is a source of support, help and protection to some children, but difficulties may reduce the other parent's ability to protect the children. Moreover, the challenges differ in the situations before and after the parents' separation. The conclusion underlines the importance of taking a family perspective, working with the whole family and seeking solutions that take into account all persons of importance to the children's welfare. It cannot be taken for granted that the other parent is able to protect the children. A careful assessment of the children's living conditions is warranted and that assessment should include listening to the children.

Detta informationsmaterial uppdaterades i maj 2024.
Materialet är framtaget i samarbete med Malin Lövgren

Den här skriften ingår i Barncancerfondens skriftserie där vi tar upp olika typer av barncancer, behandlingar och annat som berör barn med cancer och deras familjer. Tanken med skriften är att ge stöd till dig som förlorat en bror eller syster i cancer.

Children and adolescents whose parents have mental illness (CAPRI) are a potentially vulnerable group. Previous studies showed that they are more likely to experience adverse mental health and social outcomes. However, studies investigating their physical health outcomes are scarce. Additionally, reliable estimates on the size of this group and their living conditions in contemporary Sweden is lacking. My thesis aimed to establish the prevalence of CAPRI in Sweden and to deepen our understanding of their physical health and living conditions. Five individual studies were conducted using linkage from various Swedish national registers. One of the studies was also conducted using data from English registers

Children and adolescents whose parents have mental illness (CAPRI) are a potentially vulnerable group. Previous studies showed that they are more likely to experience adverse mental health and social outcomes. However, studies investigating their physical health outcomes are scarce. Additionally, reliable estimates on the size of this group and their living conditions in contemporary Sweden is lacking. My thesis aimed to establish the prevalence of CAPRI in Sweden and to deepen our understanding of their physical health and living conditions. Five individual studies were conducted using linkage from various Swedish national registers. One of the studies was also conducted using data from English registers.

Grief following a parent’s suicide has been called ‘the silent grief’: due to a prevailing stigma connected to suicide as a mode of death, the parent cannot be talked about. This silenced or distorted communication complicates grieving youths’ meaning reconstruction centred on the question of why the parent committed suicide – a question inevitably linked to queries of who the deceased parent was, and that ultimately triggers thoughts about who oneself has become in the light of this experience. Previous research has emphasized how vulnerable parentally suicide-bereaved youths are by categorizing them as ‘at risk group’ of social and psychological problems and even suicide. However, there is scant knowledge about how these young mourners perceive and manage their own grief and need for social support – knowledge that is essential from a professional perspective. The aim of this thesis is to use a narrative research approach to investigate what and how young mourners tell of their experiences in a variety of social contexts: research interviews, a theatre play and two chat contexts on the Internet. Since they actively seek to achieve something through their communication with others, mourning youths are seen as storytellers and social actors, rather than passive victims of circumstance. This thesis shows how these young mourners search for a context outside of their immediate daily networks where they can normalize and liberate themselves and their deceased parent from stigmatizing discourses. The possibility of narrating experiences in a de-stigmatizing context supports a renegotiation of how to make sense of the suicide – from a voluntary and selfish act, to an involuntary and desperate act caused by adverse life situations or ‘unbearable pain’ and depression. This knowledge is applicable to encounters with parentally suicide-bereaved youths in a professional context, such as social work practice.

Syftet med översikten är att samla och systematisera aktuell och relevant forskning kring barn
medfrihetsberövade föräldrar för att därigenom bidra till ökad kunskap om och förståelse av deras
situation, reaktioner och behov.

Tre frågor har formulerats:
• Vad innebär det konkret för ett barn att ha en frihetsberövad förälder?
• Vilka konsekvenser och potentiella risker innebär det för ett barn att ha en frihetsberövad
förälder?
• Vilka behov har barnet och vilka hinder och möjligheter finns för barnet att hantera sin situation
på ett konstruktivt sätt utifrån omständigheterna?

I den här rapporten får du en inblick i hur situationen kan se ut för barn och unga som har en förälder eller annan familjemedlem som är eller har varit frihetsberövad. Du får ta del av barn och ungas röster avseende deras rätt till information, stöd och kontakt med frihetsberövad familjemedlem samt deras önskningar och framtidstankar. Utifrån barnens röster, samlad forskning och vår egen kunskap och erfarenhet redogör vi avslutningsvis för rekommendationer för att stärka dessa barns rättigheter.

I den här rapporten redovisar Junis vilken stödverksamhet som landets kommuner erbjuder barn som växer upp med missbruk eller beroende. Vi ger också exempel på människor, forskning och verksamhet som gör skillnad för de här barnen.

Rapporterna går att beställa eller ladda ner
på Junis hemsida

The present study aims to examine the extent to which adolescents of immigrant background experience acculturative stress (i.e., cultural clashes with parents and ethnic victimization in school) in multiple contexts, and the reasons why such stress takes a toll on their psychological functioning and views of themselves. The analytic sample includes adolescents of immigrant background residing in Sweden (N = 423, M_age = 13.19, SD = 0.51). Cluster analysis revealed five distinct groups of adolescents, based on their reports of cultural clashes with parents and ethnic victimization in school: (1) low on both acculturative stressors, (2) average on both acculturative stressors, (3) high on cultural clashes only, (4) high on ethnic victimization only, and (5) high on both acculturative stressors. Mediation analysis showed that adolescents who experienced cultural clashes at home and who were also victimized by their peers in school reported higher levels of feeling in between cultures than adolescents in all the other clusters (except those high on cultural clashes only), and in turn reported higher levels of depressive symptoms and lower levels of self-esteem. The present study highlights the importance of understanding immigrant youth's experiences across multiple contexts simultaneously in order to develop a holistic perspective on their adjustment and integration processes.

Parental psychiatric morbidity related to experiences of war and trauma has been associated with adverse psychological outcomes for children. The aim of this study was to investigate parental post-traumatic stress in relation to psychiatric care utilization among children of refugees with particular attention on the child's own refugee status, sex of both child and parents, and specific psychiatric diagnoses. This was a register study in a population of 16 143 adolescents from refugee families in Stockholm County born 1995-2000 and followed between 2011 and 2017 (11-18 years old). Parental post-traumatic stress, identified in three levels of care, was analysed in relation to child and adolescent psychiatric care use. Cox regression analysis was used to estimate hazard ratios (HR) and 95% confidence intervals (CI), adjusted for duration of residence and demographic and socioeconomic variables. Having a mother with post-traumatic stress was associated with higher psychiatric care utilization, with adjusted HR 2.44 (95% CI 1.90-3.14) among foreign-born refugee children and HR 1.77 (1.33-2.36) among Swedish-born children with refugee parents, with particularly high risks for children with less than five years of residence (HR 4.03; 2.29-7.10) and for diagnoses of anxiety and depression (HR 2.71; 2.11-3.48). Having a father with post-traumatic stress was not associated with increased HRs of psychiatric care utilization. Similar results were seen for boys and girls. Treatment for post-traumatic stress should be made available in refugee reception programmes. These programmes should use a family approach that targets both parents and children.

Introduktion för vikarier och underlag för kvalitetsutveckling i äldreomsorgen.

Boken tar ett samlat grepp om äldreboendet och fungerar utmärkt som en introduktion för vikarier och som underlag för kvalitetsutveckling för chef, legitimerad personal och övriga medarbetare.

Författaren Erland Olsson, specialistsjuksköterska i psykiatri och egen företagare, beskriver på ett enkelt sätt flertalet av de processer som behöver ingå för att den praktiska vården och omsorgen ska fungera. Han lyfter också frågor som värdegrund, bemötande och förhållningssätt i olika situationer.

Med reflektionsfrågor i varje kapitel får du som läser möjlighet att fundera över hur verksamheten fungerar på det egna äldreboendet. Reflektionsfrågorna lämpar sig också väl som underlag för diskussion i en studiecirkel eller i samband med era personalmöten på äldreboendet.

De flesta av oss kommer någon gång i livet i kontakt med äldreomsorgen, antingen utifrån våra egna behov eller som närstående. Ett äldreboende är en komplex verksamhet. Men när engagerade och kunniga medarbetare arbetar i team runt den boende på äldreboendet kan det göra underverk för den boende. Delaktiga boende och närstående kan också bidra till kvaliteten i omsorgen.

Erland Olsson är specialistsjuksköterska i psykiatri och egen företagare som tillhandahåller tjänsten som Medicinskt Ansvarig Sjuksköterska samt kvalitetsutveckling i vården, till kommuner och privata vårdgivare såväl genom stöd och handledning som via digitala produkter.

"Till skillnad från en vara där kvalitet finns i produkten, är kvaliteten i äldreomsorgen en färskvara. Den skapas i nuet, i mötet med den boende och närstående.”

Children living with a parent with a mental illness can face difficulties. Parentalmental illness may influence the parents’ ability to cope with family life, where theparents’ awareness of their illness plays an important role. Family interventionsprovided by psychiatric and children’s social care services can be a way to supportthese children, making them feel less burdened, and improving the relationshipswithin the family. The aim of this thesis was to illuminate how children infamilies with a parent with a mental illness are supported in psychiatric and socialservices, especially by means of family interventions, and how families experiencethe support. Study I explored how professionals in adult psychiatric outpatient servicesdeal with children and families when a parent has a mental illness. The findingsshowed that professionals balanced between establishing, and maintaining,a relationship with the patient and fulfilling the legal obligations towards thepatient’s children. Asking the patient about their children could be experiencedas intrusive, and involving the patient’s family in the treatment could be seen asa dilemma, in relation to the patient. Efforts were made to enhance the familyperspective, and when the patient’s family and children joined the treatment thisrequired flexibility from the professional. Study II examined how professionals in children’s social care services experienceworking with children and families when a parent has a mental illness. The socialworkers’ objective was to identify the needs of the children. No specific attentionwas paid to families with parental mental illness; they were supported in thesame way as other families. When the parental mental illness became difficult tohandle both for the parent and the social worker, the latter had to set the child’sneeds aside in order to support the parent. Interagency collaboration seemed likea successful way to support these families, but difficult to achieve. Study III investigated if patients in psychiatric services that are also parentsof underage children, are provided with child-focused interventions or involvedin interagency collaboration between psychiatric and social services and childand adolescent psychiatry. The findings showed that only 12.9% of the patientsregistered as parents in Psykiatri Skåne had registered children under the ageof 18 years. One fourth of these patients had been provided with child-focusedinterventions in psychiatric service, and 13% of them were involved in interagencycollaboration. If a patient received child-focused interventions from the psychiatricservices, the likelihood of being involved in interagency collaboration was fivetimes greater as compared to patients receiving no child-focused intervention.Study IV explored how parents and their underage children who were supportedwith family interventions experienced these interventions. The results showedthat parents experiencing mental illness were eager to find support in explainingto and talking with their children about their mental illness, although the supportfrom the psychiatric service varied. Both children and other family membersappreciated being invited to family interventions. After such an intervention, theyexperienced the atmosphere in the family as less strained and found it easier tocommunicate with each other about difficulties. Unfortunately, the participatingpartners felt that they were left without support specifically targeted at them. The thesis showed that there is a gap between how professionals deal withquestions concerning these families and their support, and the parents’ and thefamilies’ needs to receive support in handling the parental mental illness in thefamily. The psychiatric and social services need to expand their approach andwork with the whole family, in order to meet the needs of the child and otherfamily members involved.

När äldre inte klarar av att bo hemma längre flyttar de ofta till ett vård-och omsorgs-boende, lever den sista tiden där och är i behov av palliativ vård. Palliativ vård är ett förhållningssätt som kännetecknas av en helhetssyn på människan utifrån individens behov. De som arbetar nära den äldre och den närstående är vård- och omsorgsperso-nalen och det är distriktssköterskan som har det övergripande ansvaret för omvårdna-den. Stöd till den närstående är av största vikt inom den palliativa vården. Syftet med studien var att beskriva vård- och omsorgspersonalens erfarenheter av att uppmärk-samma och stödja närstående till den äldre på vård- och omsorgsboende utifrån ett palliativt förhållningssätt. Datainsamlingarna gjordes i två omgångar, en fokusgrupp-sintervju 2017 och genomförda diskussionsgrupper 2010, analyserades med hjälp av kvalitativ innehållsanalys och tolkades med hjälp av Dosseys "Theory of integral nur-sing". I resultatet framkom kategorierna att skapa trygghet för den närstående, önskan att göra den närstående delaktig och att få kunskap om palliativ vård. Kategorierna utmynnade i temat: I ett palliativt förhållningssätt stöds närstående genom att de får känna trygghet och delaktighet. Slutsatsen är att vård- och omsorgspersonalens in-tention är att stödja de närstående men behöver arbeta mer i ett partnerskap med de närstående för att de ska känna en helhet och därmed trygghet och delaktighet.

Det blir allt fler äldre personer i samhället idag eftersom vi lever längre. Ett större antaläldre personer kan innebära att fler närstående blir involverade i den äldre personenslivssituation och vård. Den personcentrerade omvårdnadsmodellen visar att närståendeär en viktig resurs för den äldre och för den äldres välbefinnande. Idag ska närståendekunna vara ett naturligt inslag i vården av den äldre personen. Sedan år 2009när nya bestämmelsen i Socialtjänstlagen kom, har vården ett ansvar att ge närståendestöd och vägledning. Detta leder till att en dialog mellan vårdpersonal och närståendeär betydande för att främja den äldres hälsa, men också för att främja närståendes delaktighetoch välbefinnande. Syftet med studien var att undersöka närståendes upplevelserav att ha en äldre person vid ett vård- och omsorgsboende. Studien har en kvalitativstudiedesign. Tre fokusgruppsintervjuer och två enskilda intervjuer genomfördesmed sammanlagt 26 närstående till en äldre person på ett vård- och omsorgsboende.Intervjuerna analyserades med en konventionell innehållsanalys. Ett gott bemötandeoch en öppen kommunikation med vårdpersonalen gjorde att de närstående kände sigvälkomna och sedda som en viktig del i vården. Närstående upplevde trygghet då desjälva och den äldre personen kände sig hemmastadda på vård- och omsorgsboendet.Slutsats: Personalen har en betydelsefull roll för närståendes välbefinnande och delaktigheti vården på ett vård- och omsorgsboende.

Den svenska offentliga äldreomsorgen växte starkt från 1950-talet, och nådde sin högsta nivå på 1980-talet, för att därefter minska under 2000-talet. Med hjälp av riksrepresentativa befolkningsundersökningar från 1954 och fram till 2009 studerar vi mönster i äldres hjälpbehov och insatser från familj och offentlig omsorg. Ansvarsförhållandet mellan stat och familj har skiftat över tid, men omsorg från anhöriga och det offentliga överlappar allt mer. De offentliga insatserna minskar samtidigt som allt fler på sikt får hjälp, men mindre och senare i livet. Allt fler äldre har anhöriga, som ger mer omsorg.

Background: Family caregivers' experiences of formal care when caring for persons with dementia through the process of the disease is sparsely investigated.

Aims: To investigate family caregivers' experiences of formal care when caring for a person with dementia, through the stages of the disease.

Design: A qualitative approach with focus group interviews.

Methods: Four focus group interviews were conducted in October 2011 with 23 spouses and adult children of persons with dementia and analysed with content analysis.

Results: The participants' experiences of formal care when caring for a person with dementia were captured in the theme 'Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia'. This can be broken down into the categories 'The dementia diagnosis - entry into formal care as a novice family caregiver', 'Needing expanded collaboration with formal care to continue care at home' and 'Being dependent on a nursing home and trying to maintain involvement'.

Conclusion: Family caregiving requires collaboration with formal care to get support adjusted to the individual's needs, specific to the stages of dementia. Caregivers experience a transition process with three main turning points: the dementia diagnosis; when they realise increased need for formal care to continue caring at home; and when the person with dementia is moved into a nursing home. The interviewed caregivers experience formal care reactive to their needs and this often promoted unhealthy transitions. Formal care needs to be proactive and deliver available care and support early on in the dementia trajectory. Interventions should focus on facilitating a healthy transition for family caregivers through the trajectory of the dementia disease to ensure their well-being.

Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person.

Methods: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis.

Results: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin.

Conclusion: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped.

Purpose: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

Methods: The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services.

Results: Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients.

Conclusion: The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers' experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services.Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use.Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes.Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Background: Next of kin participation in care is a cornerstone of palliative care and is thus important in nursing homes, and outcomes following interventions need to be evaluated using robust methods.

Objective: To use within-group and within-individual analytical approaches to evaluate the participation of next of kin in care following an intervention and to compare the outcome between the intervention and control groups.

Methods: A pre-post intervention/control group study design was used. The educational intervention, directed towards staff members, focused on palliative care. The Next of Kin Participation in Care scale comprises the Communication and Trust subscale and the Collaboration in Care subscale, with nine items each. In total, 203 persons (intervention group: n = 95; control group: n = 108) were included. Three different analytical approaches were used: 1) traditional within-group comparison of raw ordinal scores and linearly transformed interval scores; 2) modern within-individual (person-level) interval score comparisons; 3) comparisons between the intervention group and control group based on individual person-level outcomes.

Results: Within-group comparisons of change revealed no change in any of the groups, whether based on raw or transformed scores. Despite this, significant improvements at the individual level were found in 32.9% of the intervention group and 11.6% of the control group for the total scale (p = 0.0024), in 25% of the intervention group and 10.5% of the control group for the Communication and Trust subscale (p = 0.0018), and in 31.2% of the intervention group and 10.5% of the control group for the Collaboration in Care subscale (p = 0.0016). However, a significant worsening at the individual level in Collaboration in Care was found in 35.1% of the intervention group but only among 8.4% of the control group (p < 0.0005).

Conclusion: The intervention seems to have a positive impact on next of kin participation in care in nursing homes, especially for communication and trust. However, some next of kin reported decreased participation in care after the intervention. Modern individual person-level approaches for the analysis of intervention outcomes revealed individual significant changes beyond traditional group-level comparisons that would otherwise be hidden. The findings are relevant for future outcome studies and may also necessitate a re-evaluation of previous studies that have not used individual person-level comparisons.

One cornerstone of palliative care is improving the family's quality of life (QoL). The principles of palliative care have not been sufficiently applied in nursing homes. The aim of this study was to investigate the experiences of QoL of next of kin of frail older persons in nursing homes after an educational intervention concerning palliative care. This qualitative interview study with 37 next of kin used an abductive design with deductive and inductive content analysis. The deductive analysis confirmed the three themes of QoL from the study before the implementation: (1) orientation to the new life-situation, (2) challenges in the relationship, and (3) the significance of the quality of care in the nursing home. The inductive analysis resulted in the sub-theme "Unspoken palliative care". Being the next of kin of an older person living in a nursing home can be distressing despite round-the-clock care, so staff need to apply a more explicitly palliative care perspective. Future research needs to evaluate the influence of meaning-focused coping on next of kin's QoL and integrate this knowledge in psychosocial interventions. 

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

Foto: Anna Pella

Sammanfattning
Mamma är sig inte lik. Hon fräser, blir lätt arg och är alltid trött. Hon har blivit sjuk och behöver vila. Det är liksom huller om buller i huvudet på henne. I berättelsen får vi följa barnen Maxi och Lilla Lo som försöker förhålla sig till sin mammas mående. Är det deras fel att mamma är sjuk? Ska klumpen i magen någonsin försvinna? Det här är en berättelse som börjar i grått, men hur slutar det?

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.

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.

Abstract
BACKGROUND:
Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
DESIGN: This is a qualitative interview study using both focus group interviews and individual interviews. SETTING/SUBJECTS: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.´MEASUREMENTS: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. RESULTS: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. CONCLUSIONS:
Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member

Abstract [en]
OBJECTIVE: The aim of the study was to explore how family members experienced the use of a diary when a relative does not survive the stay in the intensive care unit (ICU).

METHOD: A qualitative method with a hermeneutic approach was used. Nine participants who read/wrote eight diaries in total were interviewed. The collected data were analysed using a hermeneutic technique inspired by Geanellos.

FINDINGS: The analysis revealed an overall theme 'the diary was experienced as a bridge connecting the past with the future', which was a metaphor referring to the temporal aspect where there was the period with the diary up until the patient's death and then the postbereavement period. The diary contributed to both a rational and emotional understanding of the death of the patient and disclosed glimmers of light that still existed before the illness deteriorated. Further, the diary bridged the space between family members themselves and between family and nursing staff. It helped to maintain a feeling of togetherness and engagement in the care of the patient which family members found comforting.

CONCLUSION: Family members of nonsurvivors had a need to have the ICU time explained and expressed. The diary might work as a form of 'survival kit' to gain coherence and understanding; to meet their needs during the hospital stay; and, finally, to act as a bereavement support by processing the death of the patient.

Abstract:
Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

Abstract

The Family Initiative's International Neonatal Fathers Working Group, whose members are the authors of this paper, has reviewed the literature on engaging fathers in neonatal units, with the aim of making recommendations for improving experience of fathers as well as health outcomes in neonatal practice. We believe that supporting the father-baby bond and supporting co-parenting between the mother and the father benefits the health of the baby, for example, through improved weight gain and oxygen saturation and enhanced rates of breastfeeding. We find, however, that despite much interest in engaging with parents as full partners in the care of their baby, engaging fathers remains sub-optimal. Fathers typically describe the opportunity to bond with their babies, particularly skin-to-skin care, in glowing terms of gratitude, happiness and love. These sensations are underpinned by hormonal and neurobiological changes that take place in fathers when they care for their babies, as also happens with mothers. Fathers, however, are subject to different social expectations from mothers and this shapes how they respond to the situation and how neonatal staff treats them. Fathers are more likely to be considered responsible for earning, they are often considered to be less competent at caring than mothers and they are expected to be "the strong one", providing support to mothers but not expecting it in return. Our review ends with 12 practical recommendations for neonatal teams to focus on: (1) assess the needs of mother and father individually, (2) consider individual needs and wants in family care plans, (3) ensure complete flexibility of access to the neonatal unit for fathers, (4) gear parenting education towards co-parenting, (5) actively promote father-baby bonding, (6) be attentive to fathers hiding their stress, (7) inform fathers directly not just via the mother, (8) facilitate peer-to-peer communication for fathers, (9) differentiate and analyse by gender in service evaluations, (10) train staff to work with fathers and to support co-parenting, (11) develop a father-friendly audit tool for neonatal units, and (12) organise an international consultation to update guidelines for neonatal care, including those of UNICEF.

Abstract [en]

OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period.

METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up.

RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change.

DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period. METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries
(Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up. RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia
diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems
(OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely
to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change. DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

Doktorsavhandling

Aim: To explore forensic care in EDs for victims of violence and their family members from the perspectives of ED department heads, ED nurses, and a family member of a victim of violence. Methods: Study I consisted of a questionnaire to all heads of EDs in Sweden, data were analyzed with descriptive statistics. Study II consisted of a similar questionnaire which also included the instrument Families' Importance in Nursing Care-Nurses' Attitudes. It was sent to all nurses at 28 EDs and data were analyzed using descriptive statistics, multiple linear and ordinal regression analysis. Study III comprised of individual interviews with twelve nurses from seven EDs and data were analyzed with content analysis. Study IV was a single case study with two interviews with a family member of a victim of violence. Data were analyzed with a Gadamer-inspired hermeneutic approach. Results: ED preparedness for forensic care varied and was often limited to women and children. Nurses played a key role, but most of them had no training for this task and felt uncertain (I, II, III). Creating a caring encounter was the main challenge for providing forensic care and nurses perceived hindering factors to overcome this challenge (III). Family members were rarely included in forensic care and nurses perceived that family members were offered little help (I-III). Having ED documents that included family members, was associated with a more positive attitude to family members, which in turn was associated with involving them in care (II). For the family member, perfunctory encounters and caring alliances had a major impact and the experience reframed life (IV). Conclusion: Lack of preparedness in EDs to care for all types of victims of violence and differences between individual nurses may prohibit the provision of equal care. Hindering factors for a caring encounter can result in forensic care being unaddressed, which may limit possibilities for alleviated suffering and legal justice. Family members were rarely included in forensic care, but caring encounters can be crucial for the family member in the aftermath of violence

Haja adhd tar med dig på en spännande och initierad djupdykning i hur det är vid adhd och inte minst varför.

Varför har personer med adhd så svårt för att njuta av framtida segrar, och hur hänger det ihop med avhopp från utbildningar och drogers lockande låga?

Är det psykedeliska drömspel som hjärnans skärmsläckare (default mode network) bjuder oss på bara ett ointressant bakgrundsbrus, eller rent av huvudpersonen i kunskapen om vad adhd egentligen är?

Hur kan jammande jazzmusiker skapa förståelse för hur grupper av hjärnregioner spelar tillsammans, men också duckar för varandra?

Hur kan adhd vara så starkt kopplat till risker, eller rent av undergångsfaktorer, men samtidigt ha psykiatrins bästa prognos?

Med energi och lätthet förmedlar psykiatern Björn Roslund avancerad kunskap som gör skillnad i hur vi ser på och kan leva med adhd. Boken är skriven för dig som själv har adhd, anhöriga och för alla nyfikna som vill lära sig mer.

Abstract
Falls in older persons are prevalent and costly for the individual and the health system. Falls prevention guidelines have been developed from best evidence to minimise falls in older persons.

Aim: To synthesise the literature on falls prevention strategies used by community dwelling older persons and/or their informal carers and to compare the commonly adopted strategies with those recommended by falls prevention guidelines.

Data sources: Health sciences databases for full text articles published in English plus reference list searching of included articles.

Review method: An integrative review approach. Studies were included if they identified fall prevention management strategies used by community dwelling older adults and/or their informal carers. Quality appraisal was undertaken using appropriate Joanna Briggs Institute critical appraisal tools. Information relevant to the aim of the review were extracted and coded into categories then inductively sorted into sub-themes and themes.

Results: Of the seventeen studies included in the review, eleven identified older adults' falls prevention strategies, two investigated fall prevention strategies used by carers, and four explored perspectives of older persons together with their carers, representing the perspectives of an estimated 501 older persons and 102 carers. Strategies used by older adults arose because of self-awareness about their changing physical ability, and advice and support mainly from family or friends. Carer fall prevention strategy was predominantly around protection of the older adult from falling by discouraging independence.

Conclusions: The fall self-management strategies adopted by older adults and their carers to prevent falls, in the main, do not align with international best practice fall prevention guidelines.

Abstract 
Objective: The aim of the study was to highlight informal caregivers' interest in using the Information and Communication Technology (ICT)-based ACTION service (Assisting Carers using Telematics Interventions to meet Older People's Needs) and their ideas for how to further develop and extend the service. The use of ICT is constantly increasing worldwide. Europe has the highest old age dependency ratio, but other parts of the world are also experiencing a dramatic ageing of their population. The demands for care are increasing, and resources are shrinking. One way to support informal caregivers is through ICT.

Methods: The study employed a qualitative design. Focus group interviews were carried out with informal caregivers in Sweden. The interviews were analysed using a latent content analysis method.

Results: The analysis yielded a major theme, striving to feel confident, with four categories: informal caregivers' reflections and ideas about ICT; promoting their own health process; increasing their knowledge bank and informal caregivers' rights; and striving for inclusiveness.

Conclusions: The present study highlights the challenges that informal caregivers face in their daily life as well as their resources to devise possible solutions that could improve their situation. To preserve their health, a carer support plan including regular health checks could be helpful. ICT-based support (such as the ACTION service) could act as a way forward for supporting informal caregivers in their striving to feel confident. The study highlighted that ICT-based support has the potential to act as a direct benefit for informal caregivers.

Integrating Family Caregivers into Palliative Oncology Care Using the Self- and
Family Management Approach. Schulman-Green D, Feder S.
OBJECTIVE: To describe the integration of family caregivers into palliative
oncology care using the Self- and Family Management Framework.
DATA SOURCES: Peer-reviewed journal articles.
CONCLUSION: The role of family caregivers in palliative oncology includes
focusing on illness needs, activating resources, and living with cancer. Several
factors may serve as facilitators of or barriers to these activities. A growing
number of interventions support family caregivers' involvement in palliative
oncology care.
IMPLICATIONS FOR NURSING PRACTICE: Nurses should identify who the family
caregiver is, confirm ability and willingness, discuss patients' and family
caregivers' goals for cancer care, activate resources, and promote ongoing
communication to support changing needs.

Abstract [en]

We estimate how much caregiving men and women respectively do, and how much of the caregiving is done by older (65+) and younger persons, inside their household and for other households, in Spain and in Sweden. To assess this, we use self-reported hours of caregiving from two national surveys about caregiving, performed in 2014 (Spain, N = 2003; Sweden, N = 1193). Spain and Sweden have dissimilar household structures, and different social services for older (65+) persons. Caregivers, on average, provide many more hours of care in Spain than in Sweden. Women provide about 58% of all hours of caregiving, in Spain in all age groups, in Sweden only among younger caregivers. The reason is the dominance of partner caregivers among older Swedes, with older men and women providing equal hours of care. Family caregiving inside the household is more extensive in the more complex Spanish households than in Swedish households. Family care between households prevails in Sweden, where the large majority of older persons live with a partner only, or alone. This is increasingly common in Spain, although it remains at a lower level. We estimate that older persons provide between 22% and 33% of all hours of caregiving in Spain, and between 41% and 49% in Sweden. Patterns of caregiving appear to be determined mainly by demography and household structure.

Abstract
BACKGROUND: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress. AIM: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving. METHODS:
This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kincharacteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed. RESULTS: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem. CONCLUSIONS: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.

"Jag vill ha en annan mamma, en som kan springa ..."

Kerstins fotbollslag ska spela match mot föräldrarna. Kerstins pappa, som brukar vara bäst på plan, kan inte vara med så mamma ska med i stället. Men mamma sitter ju i rullstol, hon kan ju inte spela.

Mamma kommer till matchen och rycker dessutom in som värsta hjälten.

Det här är en berättelse om att ha en förälder som inte är som alla andra, men som kan vara världsbäst ändå!

Ann Gomér berättar sin historia om hur livet förändrades för henne och hennes familj när andra dottern Frida föddes. Frida föddes med omfattande funktionsnedsättningar och läkarna kunde inte riktigt ge henne en diagnos. Många tankar och många svårigheter, men också glädjeämnen mitt i det svåra. Hur livet blir för andra dottern Fanny beskriver Ann, men Fanny själv berättar mer i ett efterord

Sammanfattning
De var en lycklig familj med två barn i det vackraste landet Sverige. När det tredje barnet föddes förändrades allt. Det lilla barnet fick sin diagnos och familjen började kämpa med den nya situationen. Långsamt började familjen falla samman. Fotografen Anna Clarén har använt sin kamera som ett verktyg för dokumentation, men också som terapi och tröst. Resultatet är en djupgående och överväldigande berättelse om en familj och om autism som inte lämnar någon oberörd. Boken är en intim och djupt personlig fotografisk dokumentation av en familj i ett skede när livet plötsligt och fullständigt förändras

Introduction: Many people, often older adults, living in long-term care homes (OA-LTCH) became socially isolated during the COVID-19 pandemic due to variable restrictions on in-person visits and challenges associated with using technology for social connectivity. Health providers were key to supporting these OA by providing additional care and facilitating their connections with family using technology such as smartphones and iPads. It is important to learn from these experiences to move forwards from the COVID-19 pandemic with evidence-informed strategies that will better position health providers to foster social engagement for OA-LTCH across a range of contextual situations.

Objective: This exploratory qualitative description study sought to explore health provider experiences in supporting social connectedness between family members and OA-LTCH within the COVID-19 context.

Methods: Qualitative, in-depth semistructured interviews were conducted with 11 health providers.

Results: Using inductive qualitative content analysis study findings were represented by the following themes: (a) changes in provider roles and responsibilities while challenging for health providers did not impact their commitment to supporting OA-LTCH social and emotional health, (b) a predominant focus on OA-LTCH physical well-being with resultant neglect for emotional well-being resulted in collective trauma, and (c) health providers faced multiple challenges in using technology to support social connectivity.

Conclusion: Study findings suggest the need for increased funding for LTC to support activities and initiatives that promote the well-being of health providers and OA living in LTC, the need to prioritize social well-being during outbreak contexts, and more formalized approaches to guide the appropriate use of technology within LTC.

Background and objectives: Government-mandated health and safety restrictions to mitigate the effects of coronavirus disease 2019 (COVID-19) intensified challenges in caring for older adults in long-term care (LTC) without family/care partners. This article describes the experiences of a multidisciplinary research team in implementing an evidence-based intervention for family-centered, team-based, virtual care planning-PIECESTM approach-into clinical practice. We highlight challenges and considerations for implementation science to support care practices for older adults in LTC, their families, and the workforce.

Research design and methods: A qualitative descriptive design was used. Data included meetings with LTC directors and Registered Practical Nurses (i.e., licensed nurse who graduated with a 2-year diploma program that allows them to provide basic nursing care); one-on-one interviews with family/care partners, residents, Registered Practical Nurses, and PIECES mentors; and reflections of the academic team. The Consolidated Framework for Implementation Research provided sensitizing constructs for deductive coding, while an inductive approach also allowed themes to emerge.

Results: Findings highlighted how aspects related to planning, engagement, execution, reflection, and evaluation influenced the implementation process from the perspectives of stakeholders. Involving expert partners on the research team to bridge research and practice, developing relationships from a distance, empowering frontline champions, and adapting to challenging circumstances led to shared commitments for intervention success.

Discussion and implications: Lessons learned include the significance of stakeholder involvement throughout all research activities, the importance of clarity around expectations of all team members, and the consequence of readiness for implementation with respect to circumstances (e.g., COVID-19) and capacity for change.

We assess whether informal care receipt affects the probability of transitioning to a nursing home. Available evidence derives from the US, where nursing home stays are often temporary. Exploiting linked survey and administrative data from the Netherlands, we use the gender mix of children to retrieve exogenous variation in informal care receipt. We find that informal care increases the chance of an admission within a three-year period for individuals with severe functional limitations, and increases the costs incurred on formal home care. For individuals with mild limitations, informal care substantially decreases total care costs, whereas its effect on nursing home admission is unclear. Further, informal care results in lower post-acute care use and hospital care costs, and does not increase mortality. Promoting informal care cannot be expected to systematically result in lower institutionalization rate and care costs, but it may nonetheless induce health benefits for its recipients

Aim: Our aim was to gain insight into how the relatives of family members with dementia have experienced their family members' transition from home to permanent nursing home placement.

Design: Our research was a qualitative case study.

Methods: Inspired by Kvale and Brinkmann's phenomenological-hermeneutic approach, we performed the thematic analysis of semi-structured interviews describing how the relatives of family members with dementia have experienced the dementia trajectory.

Results: Twelve relatives of family members with dementia living in nursing homes agreed to participate. The descriptions of relatives' experiences indicated four primary themes: mismatches between healthcare services and the family members' needs, witnessing the family members' cognitive decline, the effects of the experiences on the relatives' health and well-being and what matters to the relatives during their family members' transition to nursing home. Mismatches between available resources in the municipalities and the family members' healthcare needs were the most distressing experiences, along with the family members' gradual cognitive decline. In response, the relatives stressed individualized support, continuity in follow-up care and regular information-sharing between them and staff members caring for their family members. They also highlighted the importance of facilitating seamless transitions from home to nursing homes.

Beskriver demens på ett sätt som ett litet barn kan förstå. Lovis Anjovis passar för barn 3-6 år.

Lovis Ansjovis farfar bor på en liten ö i skärgården och har ett hjärta lika stort som havet. Men när han fyller år och hela släkten tar båten ut till ön förstår Lovis att något inte är som vanligt.

De vuxna tycker att farfar har blivit vimsig och på kalaset går det mesta fel. Han säger konstiga saker, tårtan blir en katastrof och både farfar och hans glasögon försvinner.

Vad är det egentligen som har hänt?

Lovis Ansjovis och glömskan är den andra boken om sexåriga Lovis. Böckerna är skrivna av Maria Estling Vannestål och Sanna Hellberg, som också har ritat bilderna.

Jenny Eriksson var 10 år när hennes pappa fick en demenssjukdom. Det här är hennes berättelse om hur livet kan bli när hjärnan inte fungerar. Om ångest, utmattningssyndrom och Alzheimers sjukdom. En dag går det inte att äta själv längre men själen fortsätter ändå att dansa disco. Försvinner och stannar kvar är Jennys självbiografiska debutroman.

För dig som har en förälder med demenssjukdom
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Har du en förälder med demenssjukdom och känner dig ensam i din situation? Då är den här boken för dig. Du kommer att inse att du faktiskt inte är så ensam som du kanske tror. I själva verket finns det tusentals tonåringar och unga vuxna som går igenom precis samma sak som du – som inte alltid får rätt hjälp, lätt blir missförstådda av omgivningen och som kanske mår ganska dåligt. Att vara ung och anhörig till någon som har alzheimer eller någon annan typ av demenssjukdom innebär påfrestningar i vardagen som många utomstående inte riktigt förstår, så förmodligen kommer du att känna igen dig i några av bokens berättelser. Andra unga anhöriga, som varit där du är nu, ger värdefulla tips. Många unga anhöriga vittnar om hur svårt de tycker det är att hitta rätt inom vården och omsorgen. Den här boken hjälper dig förhoppningsvis en bit på vägen. Du kan bland annat läsa om vilket stöd du som anhörig kan få, viktiga dokument att ordna med, lagar och regler samt inte minst fakta om de olika demenssjukdomarna. Kunskap är nyckeln till att förstå det som händer din förälder. Dessutom svarar en expertpanel på några vanliga frågor som kan dyka upp. Den här boken kan med fördel också läsas av vård- och omsorgspersonal, skolkuratorer, lärare, tjänstemän, makthavare och andra med inflytande över de förutsättningar som ges en utsatt grupp unga människor. Så här uppfattar de sin situation.
Detta är den verklighet de lever i.

Informal care is a key pillar of long-term care provision across Europe and will likely play an
even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the
personal, psychological, social, economic, and geographic factors that shape caregiving
experiences. Here, we present the baseline cohort of the study and describe its design,
recruitment methods, data collection procedures, measures, and early baseline findings.
The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the
Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based
longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments
conducted separately with caregivers and care recipients. From 14 August 2020 to 31
August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and
primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at
least post-secondary education, and two-thirds were married/partnered. Over half of the
caregivers were employed (53%) and caring for a person with multiple chronic conditions
(56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner
(32%). About three-quarters of care recipient participants were female (77%), not employed
(74%), and had at least post-secondary education (77%), with a median age of 55 years.
Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This
study examining numerous potential influences on caregiving experiences provides an
opportunity to better understand the multidimensional nature of these experiences. Such
data could have implications for developing caregiving services and policies, and for future
informal care research.

Written and informed by national experts, this is the first publication to provide a detailed examination of the development, implementation and implications of carer leave policies and policies in 9 countries across Asia, Oceania, Europe and North America.

Background: The negative effects of informal caregiving are determined by the characteristics of the caregiver-care receiver dyad and the context of care. In this study, we aimed to identify which subgroups of older informal caregivers (1) experience the greatest subjective burden and (2) incur a faster decline in objective health status.

Methods: From a total of 3363 older participants in the Swedish National study on Aging and Care in Kungsholmen (SNAC-K), we identified 629 informal caregivers (19.2%, mean age 69.9 years). Limitations to life and perceived burden were self-reported, and objective health status was quantified using the comprehensive clinical and functional Health Assessment Tool (HAT) score (range: 0-10). Ordered logistic regressions and linear mixed models were used to estimate the associations between caregiving-related exposures and subjective outcomes (cross-sectionally) and objective health trajectories (over 12 years), respectively.

Results: Having a dual role (providing and receiving care simultaneously), caring for a spouse, living in the same household as the care receiver and spending more hours on caregiving were associated with more limitations and burden. In addition, having a dual role (β=-0.12, 95% CI -0.23 to -0.02) and caring for a spouse (β=-0.08, 95% CI -0.14 to -0.02) were associated with a faster HAT score decline. Being female and having a poor social network were associated with an exacerbation of the health decline.

Conclusions: Both the heterogeneity among caregivers and the related contextual factors should be accounted for by policymakers as well as in future research investigating the health impact of informal caregiving.

Socialt arbete med personer med funktionsnedsättning förekommer i form av insatser inom socialtjänst, omsorg, skola, hälso- och sjukvård, habilitering och många verksamheter i civilsamhället.

Socialt och kurativt arbete med personer med funktionsnedsättning innehåller en bredd samtidigt som den bidrar med ett djup för att spegla den komplexitet som professionella möter i socialt arbete. Boken syftar till att ge ett brett perspektiv på det sociala och kurativa arbetet med personer med funktionsnedsättning utifrån ett livsloppsperspektiv.

Boken består av tre delar där den första delen utgår från ett samhällsperspektiv, där etiska och rättsliga aspekter lyfts fram, liksom hälsoaspekter för personer med funktionsnedsättning. Den andra delen utgår från ett individ- och familjeperspektiv med fokus på barnaåren fram till ungdomsåren. Den sista delen berör ung vuxenperiod till åldrandet.

Målgruppen är studenter på socionom-, hälso- och sjukvårdskuratorsprogrammet och på vård- och omsorgsutbildningar, samt yrkesverksamma inom socialt arbete för personer med funktionsnedsättning, till exempel biståndshandläggare, personliga assistenter, skolkuratorer, stödpedagoger, arbetsterapeuter och motsvarande.

Föräldrar med intellektuell funktionsnedsättning (IF) kan behöva stöd i sitt föräldraskap för att barnet ska få en bra uppväxt. Socialtjänsten behöver kunskap för att kunna göra välgrundade överväganden och för att kunna ge barn och föräldrar adekvata stödinsatser. Barn riskerar att fara illa om de inte uppmärksammas eller om deras föräldrar får för lite stöd för att kunna utveckla sin föräldraförmåga. Barriskerar också att fara illa om de blir placerade och tappar kontakt med sitt ursprung och nätverk. FN:s konvention om barnets rättigheter anger att samhället behöver ge lämpligt stöd till föräldrar som ansvarar för barnets uppfostran och omvårdnad för att garantera och främja de rättigheter som barnet har. Barnet kan inte ses isolerat från sin familj. Ofta är det dock olika delar av kommunen som utreder och ansvarar för stöd i vardagen till vuxna som har en funktionsnedsättning respektive stöd och skydd för barn. Runt dessa familjer behöver kommunens olika förvaltningar arbeta tillsammans för att en helhetssyn ska vara möjlig. Det gäller både i utredningsförfarandet och vid utformning och utförande av stöd.
Syftet med kunskapsstödet är att öka socialtjänstens kunskap och kompetens för att kunna möta familjerna och tillsammans med dem utforma ett stöd.

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care

Informal carers are an integral part of care provision in Sweden, with approximately one in five people providing regular help to a family member or friend. Indeed, carers provide most of the care for people with health and/or care needs living at home. However, they are also relatively neglected in policy terms, with large variation in the type and extent of support offered across the country. This chapter outlines the carer leave policies available, highlighting that the current policy landscape does not sufficiently address the needs and preferences of working carers. Nevertheless, there is a growing political will to recognise the situation of carers in Sweden, marked by the launch of the first national carers strategy by the previous government in April 2022.

Background/Objectives: This cross-national study focuses on adolescents who provide care and support to family members or significant others. Current evidence regarding their mental health and solutions to strengthen it is limited and mostly available in a few countries. The aim of this study is to evaluate the results of a primary prevention intervention for improving the mental health and well-being of adolescent young carers (AYCs) aged 15–17 years in six European countries. The intervention was based on a psychoeducational program and tools adapted from the Discoverer, Noticer, Advisor, and Values (DNA-V) model. Methods: We designed a randomized controlled trial with 217 AYCs participating in the study, either in the intervention or control group. Quantitative and qualitative data were collected via questionnaires at baseline, post-intervention, and a 3-month follow up. Results: The results were mixed, as positive improvements in primary (i.e., psychological well-being and skills) and secondary (school/training/work functioning) outcomes were shown by the experimental group but, in most cases, they were not statistically significant. The qualitative data supported positive claims about the intervention and its appropriateness for AYCs. Conclusions: The study implementation during the peak of the COVID-19 pandemic forced the consortium to adapt the design and may have influenced the results. More long-term studies are needed to assess similar mental health programs with this hard-to-reach target group.

Background: Having an infant requiring care in a Neonatal Intensive Care Unit (NICU) is challenging for parents, often the beginning of a journey of stress and worry for parents. Such situations could cause difficulties in problem solving and communication within the family and result in decreased family functioning.
Aim: The overall aim of the thesis was to investigate parents' experiences when their children have needed NICU in the newborn period, and to investigate parents' experiences and effects of a family-centred intervention.
Method: Data was collected through interviews with parents of infants requiring NICU care (I) and six months after the intervention with Family Health Conversations (IV), analysed using thematic analysis (I) and qualitative content analysis (IV). Questionnaire data was collected in conjunction with inclusion (n=147) (II, III), and five (n=113) and eight (n=92) months after inclusion (III). The questionnaire included measures to assess mental health symptoms, bonding, family wellbeing, and family functioning. Quantitative data was analysed with descriptive and inferential statistics (II, III).
Results: The results of study I were presented as two themes: interactions within the family, and interactions between parents and staff. Interpersonal interactions could both facilitate and hinder in the sense of becoming a parent and a family. In study II nearly 40% of the parents reported anxiety symptoms. Mothers reported more mental health issues than non-birthing parents. Depression was associated with bonding difficulties and family wellbeing. In the longitudinally study (III) the intervention trended toward positive effects on mental health, family well-being, and family functioning. However, the estimated effects were not statistically significant. Regardless of the intervention, mental health symptoms decreased over time, whereas family well-being and functioning remained stable. Parents experienced the Family Health Conversations (IV) as an opportunity to co-create a comprehensive picture of what had happened after their child was born.

ABSTRACTSocial service provision in Europe has increasingly incorporated informalcarers. Consequently, these carers are now included within the scope ofall social workers, including care managers. Most support for carers isindirect support, where opportunities for respite are channelledthrough the care receiver’s needs assessment. This approach highlightsthe unique role of care managers providing carer support as theybalance their public task directed towards clients with the concurrentpolicy-driven expectation to support carers. The aim of this article is toexplore how care managers, as street-level bureaucrats, ‘make’ carersupport policy on the ground. Using systematic text condensation of 10qualitative interviews with care managers in Sweden, we present threethemes to understand care managers’ experiences. Care managers work‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outsideone’s scope of work, and there are possibilities and practices towards acarer perspective. Following Lipsky’s dictum that street-level bureaucrats’actions effectively ‘become’ the public policy they carry out, our resultshighlight care managers’ possibilities and challenges in shaping whatdirect and indirect carer support looks like on the ground.

Background: Children whose parents have alcohol use problems are at an increased risk of several negative consequences, such as poor school performance, an earlier onset of substance use, and poor mental health. Many would benefit from support programs, but the figures reveal that only a small proportion is reached by existing support. Digital interventions can provide readily accessible support and potentially reach a large number of children. Research on digital interventions aimed at this target group is scarce. We have developed a novel digital therapist-assisted self-management intervention targeting adolescents whose parents had alcohol use problems. This program aims to strengthen coping behaviors, improve mental health, and decrease alcohol consumption in adolescents.

Objective: This study aims to examine the effectiveness of a novel web-based therapist-assisted self-management intervention for adolescents whose parents have alcohol use problems.

Methods: Participants were recruited on the internet from social media and websites containing health-related information about adolescents. Possible participants were screened using the short version of the Children of Alcoholics Screening Test-6. Eligible participants were randomly allocated to either the intervention group (n=101) or the waitlist control group (n=103), and they were unblinded to the condition. The assessments, all self-assessed, consisted of a baseline and 2 follow-ups after 2 and 6 months. The primary outcome was the Coping With Parents Abuse Questionnaire (CPAQ), and secondary outcomes were the Center for Epidemiological Studies Depression Scale, Alcohol Use Disorders Identification Test (AUDIT-C), and Ladder of Life (LoL).

Results: For the primary outcome, CPAQ, a small but inconclusive treatment effect was observed (Cohen d=-0.05 at both follow-up time points). The intervention group scored 38% and 46% lower than the control group on the continuous part of the AUDIT-C at the 2- and 6-month follow-up, respectively. All other between-group comparisons were inconclusive at either follow-up time point. Adherence was low, as only 24% (24/101) of the participants in the intervention group completed the intervention.

Conclusions: The findings were inconclusive for the primary outcome but demonstrate that a digital therapist-assisted self-management intervention may contribute to a reduction in alcohol consumption. These results highlight the potential for digital interventions to reach a vulnerable, hard-to-reach group of adolescents but underscore the need to develop more engaging support interventions to increase adherence.

Aim: To investigate children's experiences of the intervention Me and my Family. Me and my Family is an intervention, for families with parental substance use problems (SUP) provided by Swedish social services outpatient care, includes eight weekly sessions where family members communicate how the SUP affects the family. Method: Data consists of 17 qualitative interviews with children, 7 to 19 years old. The qualitative data were analysed using a thematic approach, initially inductively and then discussed by adding salutogenic perspective. Results: The results are presented in three themes. Regardless of the children's varying ages, the results indicate that participating in the intervention has helped the family break the taboo surrounding parental substance use and enabled the young participants to communicate with their family members differently. The intervention also contributed to stronger bonds between children and their parents.

Parental suicide in childhood increases the risk of mental ill-health, substance use andpremature mortality, particularly through suicide. Postvention supports tailored to thewell-being and functioning of suicide-bereaved children and their remaining parents are thusof critical importance to counteract negative development. This explorative cross-sectionalstudy seeks clinically relevant knowledge by investigating posttraumatic stress (PTS), sense ofcoherence (SOC) and family functioning among children (n = 22), adolescents (n = 18) andparents (n = 40) before their attendance at a family-based grief support program. The resultsdemonstrate critical health outcomes for children and parents, and in particular for adolescents.Clinically relevant symptoms of PTS were found in 36% of children, 65% of adolescents, and37% of parents. All groups showed lower SOC than the norm. Adolescents reporteddysfunctional family functioning for the dimensions Communication and AffectiveResponsiveness. Psychoeducational and trauma-informed support is recommended wherefamily communication and meaning construction of suicide is given special attention

Background There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse’s experiences working with children who are next of kin. Methods Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ’s checklist. Results The analysis resulted in one main theme: ‘Lack of guidelines and routines among public health nurses working with children who are next of kin’. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. Conclusion The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children’s best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.

Hospital social workers (HSW) play an important role in health care, providing psychosocial support to families affected by severe illness, and having palliative care needs involving dependent children. However, there are few evidence-based family interventions for HSWs to apply when supporting these families. The Family Talk intervention (FTI), a psychosocial family-based intervention, was therefore evaluated in an effectiveness-implementation study. Within the study, HSWs were educated and trained in the use of FTI in clinical practice. This study examined HSWs’ experiences of barriers and facilitating factors during their initial use of FTI in clinical practice. Altogether, 10 semi-structured focus groups were held with HSWs (n = 38) employed in cancer care and specialized palliative home care for adults, pediatric hospital care, and a children’s hospice. Data were analyzed using content analysis. HSWs considered FTI to be a suitable psychosocial intervention for families affected by severe illness with dependent children. However, the way in which the care was organized acted either as a barrier or facilitator to the use of FTI, such as the HSWs’ integration in the team and their possibility to organize their own work. The HSWs’ work environment also impacted the use of FTI, where time and support from managers was seen as a significant facilitating factor, but which varied between the healthcare contexts. In conclusion, HSWs believed that FTI was a suitable family intervention for families involving dependent children where one family member had a severe illness. For successful initial implementation, strategies should be multi-functional, targeting the care organization and the work environment.

En stor del av den informella omsorgen ges av en partner till omsorgstagaren, som kan behöva stöd på grund av åldersrelaterade sjukdomar eller funktionsnedsättningar. Partnervårdare är ofta äldre själva och omsorgen kan ha negativa effekter på deras hälsa och välbefinnande. Samtidigt har ensamhet fått mer uppmärksamhet i forskningen som en viktig faktor för hälsa och välbefinnande, och ensamhet har även lyfts på den politiska agendan. I den här rapporten undersöks sambandet mellan partnervård och ensamhet hos personer i åldern 65 år och äldre, vilka faktorer som ökar risken för ensamhet i denna grupp, konsekvenser av ensamhet, och hur de själva upplever ensamhet.

Abstract

Att leva nära någon med psykisk ohälsa kan vara förknippat med oro, smärta och maktlöshet. Är det möjligt att själv må bra om ens förälder, syskon, barn eller partner mår dåligt? Som anhörig är det lätt att ta på sig andras smärta och lägga allt ansvar på sig själv. Men den som är anhörig behöver också få utrymme att hantera sina känslor och reaktioner. Hur ska man veta när har man gjort tillräckligt och när behöver man släppa taget?

Ungefär var fjärde svensk lider någon gång i livet av psykisk ohälsa vilket betyder många drabbade anhöriga. I den här boken varvas aktuell forskning med strategier för att minska stress, oro och hantera känslor av skuld och skam. Kom ihåg att du behöver ta hand om dig själv för att orka vara stöd åt någon annan.

Antalet familjer som har barn med särskilda behov ökar både i Sverige och internationellt. Forskning visar att familjemedlemmarna ofta löper stor risk för både psykisk och fysisk ohälsa på grund av den utsatta situation som de lever i. Men vad kan professionella inom vård och omsorg göra för att hjälpa dem?

Den här boken utgår från forskning och förmedlar både familjernas utsatthet och på vilket sätt de vill bli bemötta. Hur mår de anhöriga? Vilket stöd efterfrågar de? Och vilket stöd har de rätt att få, från såväl vård och omsorg som från socialtjänsten? I det avslutande kapitlet ger författarna konkreta råd och tips om kommunikation och bemötande till den yrkesverksamme som möter anhöriga till barn med särskilda behov.

Boken vänder sig till studerande vid utbildningar med fokus på barn och funktionsnedsättningar, till exempel inom socialt arbete och vård. Den kan även användas som ett diskussionsunderlag för vårdpersonal som i sitt dagliga arbete möter och arbetar med barn med särskilda behov och deras anhöriga

För ett barn som tvingas uppleva ett dödsfall eller livshotande sjukdom hos en nära anhörig, förändras livet för alltid. Avgörande för barnets fortsatta psykiska hälsa är att det finns vuxna i närheten som förmår att ge rätt stöd. Syftet med denna bok är att den ska fungera som en handbok för professionella och anhöriga runt barnet.

I Att möta barns sorg – en handbok beskrivs hur skilda typer av förluster ger olika konsekvenser, både på kort och längre sikt. Vanliga sorge­reaktioner och hanteringsstilar skildras, och hur sorgen förändras över tid. Boken tar också upp hur ett barns utvecklingsnivå påverkar dennes förståelse av sorg. I egna kapitel behandlas

• katastrofer, terror och barns sorg
• komplicerad sorg av rigid art som varar under lång tid
• att arbeta med familjer i sorg
• skolans stöd i sorgearbetet
• terapeutiskt arbete med barn i komplicerad sorg.

I boken ges konkreta råd om hur du som professionell eller anhörig kan stödja barnet; i hemmet, i skolan och i barnets andra relationer.

När en familjemedlem insjuknar eller drabbas av ohälsa påverkas övriga familjemedlemmar individuellt, men även familjen som enhet. Genom att använda modellen Hälsostödjande familjesamtal kan samtalsledare och familj tillsammans identifiera upplevda problem och de styrkor och resurser som finns tillgängliga för att hantera situationer med ohälsa och sjukdom. Modellen är därför en viktig del i omvårdnadsarbetet.

I denna reviderade och uppdaterade upplaga är vissa kapitel omarbetade, vissa är borttagna och två kapitel har tillkommit. Dessa behandlar centrala utgångspunkter relaterat till att lära familjecentrerad omvårdnad och för att implementera modellen i kliniskt arbete. Boken vänder sig till studenter inom vård och omsorg på grundläggande och avancerad nivå.

Boken kan med fördel även användas av samtliga yrkesgrupper inom vård och omsorg.

Delaktighet, tillgänglighet, inflytande, självbestämmande, att få leva som
andra. Det är grundläggande principer i både svensk funktionshinderspolitik
och i lagen (1993:387) om stöd och service till vissa funktionshindrade,
LSS. Som beslutsfattare har du både ett stort ansvar och möjligheter att
förvalta dessa principer och omsätta dem i praktiken. Det är när insatser
beslutas och planeras och i mötet med den enskilde individen som
målsättningarna i funktionshinderpolitiken och i LSS kan förverkligas.

Publikationen finns som pdf på Socialstyrelsens webbplats.

While welfare states and work organisations often provide policies to facilitate a reconciliation of paid work and informal care, the literature pays little attention to employees’ actual capabilities to engage with such policies. In this article, we apply the capabilities approach to interview data from managers and employees in the Netherlands to understand employees’ use or non-use of the policies. We found that job flexibility may help workers reconcile work and care in the short run but that respondents with greater job flexibility reported more health problems than respondents with less flexibility, which calls into question the sustainability of these policies.

Many family carers of older people living with dementia report reduced quality of life, but limited research has investigated what they believe could improve it. Our thematic analysis of in-depth interviews with 23 family carers questions the standardisation of carer support and the appropriateness of the current scope of services, and suggests strengthening carers’ independent right to support. We propose the notion of a ‘care–life balance’, which also draws attention to the different logics inherent in informal and formal care that future service development should seek to reconcile to better support families affected by dementia.

For caregivers of deeply forgetful people: a book that combines new ethics guidelines with an innovative program on how to communicate and connect with people with Alzheimer's.

How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of―and find renewed hope in―surprising expressions of selfhood despite the challenges of cognitive decline.

In this book, Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:

• understanding the experience of dementia
• noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"
• perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers
• how to communicate optimally and use language effectively
• the value of art, poetry, symbols, personalized music, and nature in revealing self-identity
• the value of trained "dementia companion" dogs

At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.

The significance of formal and informal supports and barriers on the company level for combining employment and informal care for older adults has rarely been investigated. This is one of the main findings of a systematic literature review. This systematic literature review elucidates what can be learned from research on practices that have been developed to maintain a sustainable work–care balance. Research indicates that firms have rarely actively addressed the topic and many seem unaware of the challenges employees are facing and the support they need. If firms offer support, they often favour individual, case-based solutions, whereas systematic approaches seem less likely to be put in place. In general, the findings show that better support for companies and for carers would seem important, even urgent, but the knowledge base for offering this support is not well developed.

Abstract [en]

In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person′s identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents′ impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.

Abstract
Background: Dementia is a public health priority with a dramatic social and economic impact on people with dementia (PwD), their caregivers and societies. The aim of this study was to contribute to the knowledge on how utilization of formal and informal care varies between Sweden and Italy. Methods: Data were retrieved from two trials: TECH@HOME (Sweden) and UP-TECH (Italy). The sample consisted of 89 Swedish and 317 Italian dyads (PwD and caregivers). Using bivariate analysis, we compared demographic characteristics and informal resource utilization. Multiple linear regression was performed to analyze factors associated with time spent on care by the informal caregivers. Results: Swedish participants utilized more frequently health care and social services. Informal caregivers in Italy spent more time in caregiving than the Swedish ones (6.3 and 3.7 h per day, respectively). Factors associated with an increased time were country of origin, PwD level of dependency, living situation, use of formal care services and occupation. Conclusions: Care and service utilization significantly varies between Sweden and Italy. The level of formal care support received by the caregivers has a significant impact on time spent on informal care. Knowledge on the factors triggering formal care resources utilization by PwD and their caregivers might further support care services planning and delivery across different countries.

Melle duckar för en sko som kommer flygande. Det kokar i Moas huvud och då kastar hon saker. Trots att Melle är van vid Moas utbrott så tycker hon att det är jobbigt. Speciellt i skolan ...

Det är tur att Moa är rolig också, annars skulle Melle inte vilja vara Moas storasyster.

Hur är det egentligen att ha ett syskon med adhd? Det vet Melle. Det är som en bergodalbana. Ibland är det lite läskigt och man kan få ont i magen, men ofta är det väldigt roligt med mycket skratt. Vad händer en helt vanlig dag hemma hos Melle? Hur tänker och känner hon när hennes lillasyster blir arg eller hittar på hyss?

• "En ljus beskrivning av en mors resa genom glömskans mörker" Göteborgs-Posten"Många böcker har jag läst om anhörigskapet vid demenssjukdom, än fler berättelser har jag lyssnat till i samtal. Den här boken kommer jag att bära med mig mer än någon annan. Den berör så djupt och Brun berättar så mänskligt." UNT"Och visst är det en paradox att smärtpunkterna, ja rentav känslan av Guds frånvaro kan frammana något så vackert och hoppfullt som denna roman. Men så är det ju också med författarskap som djupnar, där orden laddas av allt större erfarenhet, närvaro och mänsklig blick." Svenska DagbladetDet börjar vid slutet. En mamma är död. Det slutar vid början. Innan rädslan när Jonas och hans pappa märker det hon själv redan anar. Kortspelet hon förlorar gång på gång. Lunchen som lagas direkt efter frukost. Kassar som fylls med fel saker, örhängen, julkort och skoluppsatser. Försommarens syrener som inte längre väcker någon reaktion, eftersom hon inte längre minns att de doftar. En gång, innan hon började glömma, arbetade hon själv med minnet. Nu är hon yngst på demensboendet.En person som glömt vem hon är, finns hon kvar? Är det samma människa fastän personligheten bleknar bort? Och vad är störst? Minnet eller kärleken? Jonas Brun skriver om kampen med vården, om hjärnans vindlingar, om förtvivlan och tröst i vardagen med Alzheimers sjukdom."Hon minns inte" är en skildring av minnesförlust och en memoar, en månggrenad berättelse om en mor som skrivs tillbaka till livet. 

Abstract

Across the globe, medical advances and knowledge about health behaviours have allowed remarkable improvements in life expectancy. Although the developments are largely positive, population ageing raises a new set of challenges for policymakers to tackle as the shares of the population in advanced ages are growing. As many men and women as possible are needed to participate in the labour market to widen the tax base that supports national economies. Alongside employment, increasingly many working-age people provide regular assistance to older (65+) family members and relatives who no longer get by in their daily lives without support. A new balance of paid work and unpaid care is thus forming across Europe and beyond, with implications
for both individuals and societies.

En bok för förskolebarn när en mamma får bröstcancer.

Boken är tänkt att användas som stöd och inspiration vid
samtal med ett litet barn när mamma eller närstående
drabbats av bröstcancer. Vi har lagt in frågor till barn som
stöd för samtal och igenkänning. Det finns också fakta,
råd och tips till vuxna i slutet av boken.

It is unclear whether caregiving has an impact on the physical, mental and functional health of older caregivers. This study aimed to describe physical, mental and functional health in relation to family caregiving in old age (60+) over a six-year period. The study comprised 2,294 randomly selected individuals (60-96 years) from the Swedish National Study on Aging and Care, who answered the question on whether they were caregivers and who were followed up six years later. The prevalence of family caregivers was 13.1% and the incidence was 12.4%. Four tracks (T) were identified; T1) Family caregiver both at baseline and follow-up (n = 74), T2) Family caregiver at baseline but not at follow-up (n = 226), T3) non-caregiver at baseline but family caregiver at follow-up (n = 218), T4) non-caregiver both at baseline and follow-up (1,776). Only non-caregivers (T4) reported a decline in mental health, p < .036. Worries about health increased significantly in T2 and T4. The prevalence of caregivers was 13.1% with a high turnover. There are differences between family caregivers and non-caregivers in deterioration in physical and mental health as well as physical function over a six-year period.

PURPOSE: Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure.
METHODS: We purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach.
RESULT AND CONCLUSION: Our comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness

BACKGROUND: As the population is ageing, the need for informal caregivers increases, and thus we need to know more about the effects on caregivers. This study aims to determine both cross-sectional and longitudinal associations between perceived limitation of informal caregiving and mental health of caregivers.
METHODS: This population-based cohort study was based on the Swedish Psykisk hälsa, Arbete och RelaTioner (PART) study, and 9346 individuals aged 18-65 were included. Data were collected through questionnaires, interviews and Swedish registers. Informal care was defined as care given to a family member. Self-reported and diagnosed depression and anxiety were included as outcomes. Covariates included sex, age, social support and socio-economic position. Ordinal logistic regression and Cox regression were performed to determine the associations between caregiving and anxiety or depression.
RESULTS: Self-reported depression and anxiety was only increased among those experiencing limitations (adjusted odds ratios [aOR] 2.00, 95% confidence intervals [CI] 1.63-2.47 for depression; aOR 2.07, 95% CI 1.57-2.74 for anxiety)  compared to those not giving care, respectively. The adjusted hazard ratio (aHR) were increased for diagnosed depression (aHR 1.97, 95% CI 1.27-3.05) and for diagnosed anxiety (aHR 1.86, 95% CI 1.06-3.25) among those giving care and experiencing limitations, compared to those not giving care. No significant associations were found in caregivers without limitations. CONCLUSION: Caregivers experiencing limitations showed a significant association with short- and long-term anxiety and depression. This study implies the importance of exploring the degree to which informal caregiving can be provided without adding burden to caregivers.

OBJECTIVES: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. METHODS: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. RESULTS: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. CONCLUSIONS: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.

BACKGROUND AND AIM: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs.

METHODS: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis.

RESULTS: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship.

CONCLUSIONS: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being.

Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse carers of PwD in Sweden. (2)

Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4)

Conclusions: Support to spouse carers of PwD should address the carer-care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.

IMPORTANCE: To better support children with the experience of parental death, it is crucial to understand whether parental death increases the risk of adverse school outcomes.

OBJECTIVES: To examine whether parental death is associated with poorer school outcomes independent of factors unique to the family, and whether children of certain ages are particularly vulnerable to parental death.

DESIGN, SETTING, AND PARTICIPANTS: This population-based sibling cohort study used Swedish national register-based longitudinal data with linkage between family members. Register data were collected from January 1, 1990, to December 31, 2016. Data analyses were performed on July 14, 2021. The participants were all children born between 1991 and 2000 who lived in Sweden before turning age 17 years (N = 908 064).

EXPOSURE: Parental death before finishing compulsory school.

MAIN OUTCOMES AND MEASURES: Mean school grades (year-specific z scores) and ineligibility for upper secondary education on finishing compulsory school at age 15 to 16 years. Population-based cohort analyses were conducted to examine the association between parental death and school outcomes using conventional linear and Poisson regression models, after adjustment for demographic and parental socioeconomic and health indicators measured before childbirth. Second, using fixed-effect linear and Poisson regression models, children who experienced parental death before finishing compulsory school were compared with their siblings who experienced the death after. Third, the study explored the age-specific associations between parental death and school outcomes.

RESULTS: In the conventional population-based analyses, bereaved children (N = 22 634; 11 553 boys [51.0%]; 11 081 girls [49.0%]; mean [SD] age, 21.0 [2.8] years) had lower mean school grade z scores (adjusted β coefficient, 0.19; 95% CI, -0.21 to -0.18; P < .001) and a higher risk of ineligibility for upper secondary education than the nonbereaved children (adjusted risk ratio, 1.36; 95% CI, 1.32-1.41; P < .001). Within-sibling comparisons using fixed-effects models showed that experiencing parental death before finishing ompulsory school was associated with lower mean school grade z scores (-0.06; 95% CI, -0.10 to -0.01; P = .02) but not with ineligibility for upper secondaryeducation (adjusted risk ratio, 1.07; 95% CI, 0.93-1.23; P = .34). Independentof birth order, losing a parent at a younger age was associated with lower grades within a family.

CONCLUSIONS AND RELEVANCE: In this cohort study, childhood parental death was  associated with lower school grades after adjustment for familial confounders  shared between siblings. Children who lost a parent may benefit from additional educational support that could reduce the risk of adverse socioeconomic trajectories later in life

PURPOSE: There is a need to put family caregivers on the cancer survivorship research agenda. Therefore, the aim of this is study is to explore the experiences of being a family caregiver to a patient treated for oesophageal cancer. METHOD: This qualitative study was based on the ongoing nationwide and prospective Oesophageal Surgery on Cancer patients - Adaptation and Recovery study (OSCAR) including patients surgically treated for oesophageal cancer in Sweden and their closest family caregiver. One year after the patient's surgery, each family caregiver received a self-report questionnaire kit to fill in. For the purpose of this study, the responses to the open-ended question "Is there anything else you would like to share?" were used and analysed by conducting thematic analysis.

RESULTS: In total, 112 responses to the open-ended question were transcribed and analysed. The text rendered three themes: Discontinued support from healthcare-mostly a positive experience before surgery and in the acute survivorship phase. However, after discharge from the hospital, the family caregiver felt as though they were left alone, fully responsible for the patient's care. A changed life-unprepared for life-changing situation after the patient received the cancer diagnosis. A feeling that nothing will ever be the same and like your sense of self is lost. Psychological distress-was described as a feeling of being alone. Family caregivers felt invisible and no longer important to family and friends. The patient was the one that mattered.

CONCLUSION: This study indicates that patients and family caregivers would benefit from a more family-centred healthcare, where the patients' as well as the caregivers' perspectives would be acknowledged.

OBJECTIVES: Digital support services may provide informal caregivers with remote access to information and training about care issues. However, there is limited specific data on how factors such as demographics, socioeconomic resources and the caregiving context may influence caregivers' use of digital support services. The aim of this study is to identify associations between informal caregiver's characteristics and the use of the internet to access digital support services in two countries: Italy and Sweden.

SETTING AND PARTICIPANTS: A sample of 663 respondents who have access to the internet participated in a cross-sectional survey by completing the online questionnaire. Respondents were recruited by the Italian National Institute of Health and Science on Ageing and the Swedish Family Care Competence Centre.

PRIMARY AND SECONDARY OUTCOME MEASURES: Logistic regression analyses were performed to assess predictors of caregivers' frequent use of the internet to access digital support services.

RESULTS: Educational attainment (OR 3.649, 95% CI 1.424 to 9.350, p=0.007), hours per week spent caring (OR 2.928, 95% CI 1.481 to 5.791, p=0.002), total household income (OR 0.378, 95% CI 0.149 to 0.957, p=0.040), care recipient relationship to the caregiver (OR 2.895, 95% CI 1.037 to 8.083, p=0.042) and gender of care recipient (OR 0.575, 95% CI 0.356 to 0.928, p=0.023) were significant predictors in the multivariate analysis for the Italian caregivers group. Hours per week spent caring (OR 2.401, 95% CI 1.105 to 5.218, p=0.027) and age of caregiver (OR 2.237, 95% CI 1.150 to 4.352, p=0.018) were significant predictors in the multivariate analysis for the Swedish caregivers group.

CONCLUSIONS: Digital support services could be important tools to empower informal caregivers. When it comes to policy and practice in relation to caregivers, similarly to other broad vulnerable groups, there is no 'one-size-fits-all' approach, and it is therefore important to consider the specific characteristics and needs of both caregivers and care recipients.

BACKGROUND: Informal caregivers to intensive care unit (ICU) survivors may develop post-intensive care syndrome family (PICS-F), including depression, anxiety and post-traumatic stress (PTS). Our primary aim was to investigate associations between caregiver burden in informal caregivers cohabiting with ICU survivors and patients' physical and psychological outcomes.

METHODS: A prospective, multicentre cohort study in four ICUs in Sweden. Adults cohabiting with ICU patients included in a previous study were eligible for inclusion. Three months post-ICU, informal caregivers received questionnaires assessing caregiver burden, health-related quality of life (HRQL) and symptoms of depression, anxiety and PTS. In parallel, patients reported their three-month physical and psychological status via validated questionnaires. The primary outcome of this study was to compare caregiver burden in informal caregivers to patients with and without adverse physical and psychological outcomes 3 months post-ICU. Secondary outcomes were correlations between caregiver burden and informal caregivers' mental HRQL.

RESULTS: Among 62 included informal caregivers, 55 (89%) responded to the follow-up questionnaires. Caregiver burden was higher among informal caregivers to patients with an adverse outcome, compared to informal caregivers to patients without an adverse outcome, caregiver burden scale score mean (±standard deviation) 52 (11) and 41 (13) respectively (p = 0.003). There was strong negative correlation between caregiver burden and informal caregivers' mental HRQL (rs -0.74, p < 0.001).

CONCLUSION: Informal caregivers to ICU survivors with adverse physical or psychological outcome experience a higher caregiver burden. A higher caregiver burden correlates with worse caregiver mental HRQL. ICU follow-up programs should consider screening and follow-up of informal caregivers for mental health problems

BACKGROUND: Family members provide the majority of informal care for older adults in Sweden. Nevertheless, by providing a range of assistance, peers often emerge as a central to counter social isolation among older adults. Therefore, there is a need to know more about what informal care provision by older adults to their peers means for different groups of older adults.

AIM: This study investigated the types of informal care and support that older adults provide to their peers in Sweden, and how these types of care and support are associated with demographic characteristics and social isolation. We also compared older adults who provide informal care and support with those who do not.

METHOD: For this purpose, we used a national online survey named "Involuntary loneliness among senior citizens" answered by 10,044 older adults enrolled in the Swedish Citizen Panel. We adopted a mixed-method design to analyse the survey data, including free-text options (n = 2155) and numerical data. Social isolation was assessed using a score built from the social loneliness items of the UCLA Loneliness Scale.

RESULTS: In our population, 21.5% of the older adults were providing informal care and support to their peers. Practical/instrumental help was frequently offered by younger participants (<75 years), men and respondents who were less socially isolated. On a general level, the factors that were positively associated with giving informal care and support to peers were older age, being male, retired, married/living in a relationship, living in an urban area/big city and exhibiting greater isolation. Focusing specifically on social support shows that older participants (>80) and those experiencing less social isolation (score < 24) were more engaged in social activities.  CONCLUSION: This paper is unique in exploring the informal peer-caregiver's perceptions of isolation. Data were collected during the COVID-19 pandemic; this highlights the need to recognise informal care and support between older adults and to acknowledge their contributions as an essential component of Swedish civil society, especially during a societal crisis

BACKGROUND: Will being a caregiver further impact the health of a group already at risk of adverse health due to old age? This study aimed to answer the questions whether short- and long-term healthcare consumption and mortality differ between informal caregivers and non-caregivers and between high-burden and low-burden informal caregivers.

METHOD: The study population consisted of 423 caregivers and 3444 controls from the Swedish national general population study 'Good Aging in Skåne'. Caregivers were divided into those reporting high and low caregiver burden and information on caregiver status was collected from questionnaires. Data for mortality and healthcare consumption (inpatient and outpatient visits) were obtained from The National Board of Health and Welfare. Mortality was tested with Cox regression models and healthcare consumption with logistic regression models, adjusted for sociodemographic covariates, Activities of daily living (ADL) and number of chronic diseases.

RESULTS: Caregivers were younger than non-caregivers, had higher educational background, more independent in ADL and more often men. Of 423 caregivers, 73 (17.3%) reported experiencing high caregiver burden. High-burden caregivers were older, more dependent in personal ADL and gave more hours of care than those reporting low burden. In adjusted regression models, we found no differences in either consumption of healthcare nor mortality between caregivers and non-caregivers and high-burden v. low-burden caregivers looking at short-term (1 and 3 years) and long-term (10 and 15 years) follow-up periods.

CONCLUSIONS: Our findings suggest that the characteristic of being a family caregiver does not have an impact on mortality or physical health measured asinpatient admissions or instances of primary care.

Background: Next of kin to older adults over 65 years in municipal home care are concerned whether their older adults' needs are being met. In municipal home care, the registered nurses' leadership is important and complex, entailing multi-artist skills involving the older adults and their next of kin. Yet, little is known about next of kin's experiences of registered nurses' leadership. Thus, the aim of this study was to explore next of kin's experiences of registered nurses' leadership close to older adults in municipal home care. Methods: Individual telephone interviews were conducted with next of kin (n = 11) of older adults from April to September 2020 in two municipalities in western Sweden. Data were analysed using qualitative content analysis. Results: The results are presented with the theme, registered nurses do what they can, including two categories, interaction and competence, and the subcategories, relationship, communication, availability, responsibility, team leadership and cooperation. Registered nurses' leadership was experienced as a balancing act between their commitments and what they were able to achieve. Conclusions: Next of kin's experiences of registered nurses' leadership can contribute knowledge that will strengthen and prepare registered nurses for their leadership roles. This knowledge can support the development of policies for organisational preconditions that ensure quality and safe care to older adults in municipal home care.

We investigate the importance of adult children and/or cohabitation with a partner for older hip fracture patients' probability of independent living, public home care use and hospital readmission. Data from 35,066 Swedish hip fracture patients between 2012 and 2017, aged 65 years, and living at home at the time of the fracture in the Swedish Registry for Hip Fracture Patients and Treatment were linked with national registers. We applied adjusted logistic regression models and Cox proportional hazard models. In total, 959 (4.0%) women and 817 (7.3%) men had no adult children, 13,384 (56.0%) women and 3,623 (32.5%) men had no cohabiting partner and 2,780 (11.6%) women and 1,389 (12.5%) men neither had a cohabiting partner nor adult children. In comparison with women and men who had both a cohabiting partner and adult children, those without a cohabiting partner (i.e. only adult children) and those who neither had a cohabiting partner nor adult children had significantly lower probabilities of returning home (at discharge and after 4 months). They also had a greater probability of both receiving home care and having an increase in the amount of home care they receive. Having a close next of kin and hospital readmission were not associated. In conclusion, absence of a close next of kin, specifically a cohabiting partner, reduces the chance of return to independent living and increases the use of home care after a hip fracture hospitalisation. The findings highlight the importance of family support for older adults living situation after a hip fracture.

Abstract

It is unclear whether caregiving has an impact on the physical, mental and functional health of older caregivers. This study aimed to describe physical, mental and functional health in relation to family caregiving in old age (60+) over a six-year period. The study comprised 2,294 randomly selected individuals (60–96 years) from the Swedish National Study on Aging and Care, who answered the question on whether they were caregivers and who were followed up six years later. The prevalence of family caregivers was 13.1% and the incidence was 12.4%. Four tracks (T) were identified; T1) Family caregiver both at baseline and follow-up (n = 74), T2) Family caregiver at baseline but not at follow-up (n = 226), T3) non-caregiver at baseline but family caregiver at follow-up (n = 218), T4) non-caregiver both at baseline and follow-up (1,776). Only non-caregivers (T4) reported a decline in mental health, p < .036. Worries about health increased significantly in T2 and T4. The prevalence of caregivers was 13.1% with a high turnover. There are differences between family caregivers and non-caregivers in deterioration in physical and mental health as well as physical function over a six-year period.

Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person’s activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family. 

Abstract Objectives Mental health problems are a major concern in the older population in Sweden, as is the growing number of older adults aging alone in their homes and in need of informal care. Using a linked lives perspective, this study explored if older parents’ mental health is related to their children’s dual burden of informal caregiving and job strain. Methods Data from a nationally representative Swedish survey, SWEOLD, were used. Mental health problems in older age (mean age 88) were measured with self-reported ‘mild’ or ‘severe’ anxiety and depressive symptoms. A primary caregiving adult child was linked to each older parent, and this child’s occupation was matched with a job exposure matrix to assess job strain. Logistic regression analyses were conducted with an analytic sample of 334. Results After adjusting for covariates, caregiving children’s lower job control and greater job strain were each associated with mental health problems in their older parents (OR 2.52, p = 0.008 and OR 2.56, p = 0.044, respectively). No association was found between caregiving children’s job demands and their older parents’ mental health (OR 1.08, p = 0.799). Conclusion In line with the linked lives perspective, results highlight that the work–life balance of informal caregiving adult children may play a role in their older parent’s mental health

Parenting a child with cancer creates numerous additional care demands that may lead to increased difficulties in balancing work and family responsibilities. Still, there is limited knowledge of how parents cope with both parenthood and paid work after a child’s cancer diagnosis. The aim of the study was to explore mothers’ and fathers’ experiences of balancing the dual roles of work and parenthood following a child’s cancer diagnosis. Nine focus groups with in total 32 parents of children with cancer in Sweden were conducted. The data was analysed using qualitative content analysis. Three categories were identified: Shifts in the importance of the parent role and the work role, Influence of context and conditions on the balance of roles, and Long-term unbalance of roles. Parents expressed an increased appreciation of time spent with family, but also emphasized the importance of work to counterbalance the sometimes overwhelming parenting demands. The pre-existing financial situation, work situation, and employer behaviour were important factors influencing the parents’ ability to balance work and family. Traditional gender roles influenced how couples divided responsibilities and reflected on their experiences. Mothers and fathers were also met with different expectations, which highlights the need for the healthcare to consider their communication with caregivers. Importantly, the parents expressed how the child’s illness affected their ability to balance work and family for a long time, while the understanding and support from others had steadily declined. Enabling parents to care for their ill child without sacrificing their own career is of utmost importance, and future research should focus on identifying which factors facilitate for parents to achieve a sustainable work-life balance.

Background: Children are affected when parents are ill and health care professionals are bound by law to consider children's need for information on their parent's illness. Effective interventions are available in settings other than primary health care, and possibilities seen by GPs and families have been described previously. Most patients in Sweden are treated in primary health care. It is suspected that parental health problems treated in primary care create a challenge and risk for the children. It is unknown how children and parents negotiate this situation and what strategies they use.AimThe overall aim was to conceptualize the situation of ill parents and their children in primary health care, as a contribution towards the long-term goal of developing suitable and sustainable interventions for children as next of kin in primary care.MethodsAnalysis of interviews with 32 parents and 23 of their children in three primary health care clinics using grounded theory method resulted in a conceptualization of (i) how these children view their situation (Study I) and (ii) a theory on the processes and typologies of upholding family relationships from the perspective of their parents (Study III). A systematic review exploring interventions for children of ill parents in all health care settings globally resulted in a full overview of the literature and, via content analysis, a resulting summary of what children and parents find helpful in interventions (Study II). All three studies were analytically integrated in this thesis.ResultsAnalysis of the interviews revealed that children feel burdened and lonely when their parents are ill (paper 1) and wish their parent to reveal (paper 3). Parents are aware that their children know they are ill and wish their parents to reveal, but often feel incapable to do so. A Grounded Theory conceptualizing what it takes to uphold family relationships in a context of increasing awareness of parental illness (paper 3) was developed. Six different awareness contexts are posed (closed, concealed, suspicious, conflicted, mutual pretense and open) and how parents manage, or often fail to manage them, are conceptualized. The theory hypothesizes that to reveal the parent needs to manage their common awareness context about the illness. And to manage their common awareness context the parent must comprehend the illness and the child needs. Parents and children wish primary health care to support the often-needed learning processes. (Study 1 and 3).Thirty-two studies conducted in mental health (n=22), cancer care (n=6) and HIV care (n=4) were analysed in a systematic literature review. The quantitative studies showed a small-to-moderate effect on the health of the child. Systematic content analysis of qualitative results from mental health and cancer care generated new data concerning what both children and parents found useful in interventions (increased knowledge, improved communication, improved coping strategies and better capacity to handle negative feelings) and additional benefits perceived by the parents (observed changes in their children's behaviour, increased understanding of their own child and enjoyment of the child's respite).

Abstract

Abstract [en]

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15–17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs’ mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs’ conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

Denna rapport bygger på avhandlingen Upholding family relationships in a context of increasing awareness of parental illness. Rapporten beskriver en teori som utvecklats baserat på intervjuer med föräldrar och barn. Rapporten innehåller också förslag på vilken roll primärvården kan ta i arbetet med barn som anhöriga, samt handfasta råd till hälso- och sjukvårdspersonal för att stärka kommunikationen mellan sjuka föräldrar och deras barn.

Abstract

Background

With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research.

Methods

We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers.

Results

Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – the time and compromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust.

Conclusions

In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

Objective: To examine the relationship between care recipient (person with Alzheimer's disease) ability to perform daily tasks and caregivers' (CG) perceived burden and depression, guided by the caregiver identity theory. We also examine the mediating effect of CG abilities to meet their basic needs.Methods: This study utilizes the baseline data of the REACH II study. Spearman's rho (ρ) was used to test for relationships between burden, reported depression, and each ADLs and IADLs. To further explore the relationship between burden and each ADLs and IADLs, structural equation modeling was conducted using Mplus 8.0.Results: Reported CG total scores indicated increased perceived CG burden with greater number of assisted daily activities. CG depression scores were significantly predicted by reported burden scores and caregiver's ability to pay for basic needs. Importantly, 34.6% of variation in CG reported depressions scores were explained by reported burden scores. A multivariate regression model with reported burden scores, controlling for caregiver's ability to pay for basic needs, explained 36.6% of the variance in CG depression scores. Burden scores and CG ability to pay for basic needs significantly predicted depression scores. Results from the three models indicated that CG burden fully mediated the relationship between daily living skill scores and CG depression.Conclusion: Our study findings suggest the need to more closely examine the link between AD caregiving, financial instability, and mental health and bolster support for policies and programs that offer tangible supports and services to offset the costs of informal AD CG.

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers' views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

Research results suggest that illness can undermine patients' dignity and that dignity can be understood as an experience formed in communion with others. The aim of this study was, therefore, to illuminate the meanings of lived experiences of dignity as an intersubjective phenomenon from the perspective of dyads in palliative care. The authors analyzed transcripts from interviews with nine dyads using a phenomenological-hermeneutical method. Within the contexts of the dyadic relationship and the dyadic-health care professional relationship, the authors' interpretation revealed two meanings based on the participants' lived experiences: "Being available," related to responding and being responded to in terms of answerability and we-ness, and "Upholding continuity," linked to feeling attached through the maintenance of emotional bonds and being connected through upholding valued activities and qualities in daily living. The authors further reflected on the meanings in relation to philosophically grounded concepts such as presence, objectification, dependence, and dyadic body.

Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these are enacted. Until now, research has focused on estimating numbers of AYCs and the impact of caring tasks. A preliminary examination of policy responses to YCs was followed by expert interviews. Case study analysis of 25 interviews and a cross-national synthesis were undertaken before incorporating feedback from former YCs. Different responses to YCs were found, ranging from protection and support in policy and legislation and a definition for YCs, to a total lack of recognition and support. Findings highlight the potential to extend existing legislation, policy and service frameworks to include AYCs, and the importance of recognising and raising awareness of YCs. Awareness should be raised at all levels of society for example with professionals in health, social and education sectors and the general public. A definition for YCs is needed, so AYCs can self-identify and AYCs should be recognised as an important target group for policy makers.

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Barn och ungdom

Lillebror har hamsterkinder och stjärnögon. Han har också en ovanlig sjukdom som heter cystisk fibros. Den syns inte på honom men han kommer alltid att ha den. Ibland pussar jag honom på pannan. Då smakar det jättemycket salt. Han är god som saltlakrits. Boken är för barn eller syskon till barn med cystisk fibros, eller andra som har ett barn med cystisk fibros i sin närhet. På ett pedagogiskt och lekfullt sätt förklaras sjukdomen genom en storebrors ögon

Dissertation

Families with sick children often prefer home care to hospital care, and home care services (HCS)
are increasing worldwide with limited evidence on how to provide high quality HCS in different
settings. This thesis aims to provide a comprehensive view of HCS for sick children when provided
by county-based HCS organized to care for adults and children.
A convergent mixed methods design with data-collection 2015–2019 was used. Phenomenographic
analysis of interviews with 36 HCS healthcare professionals showed that caring for children was a
challenging but rewarding task. Hermeneutic phenomenology was used to analyse 37 family
member's lived experience of HCS as a possibility to strengthen family life and health when trustful
alliances were built with HCS healthcare professionals. A review of referrals to HCS during a threeyear period showed that 171 children with various ages, diagnoses and caring needs received HCS.
Calculations of one year's healthcare costs for 32 children who received care both at the hospial
and by HCS showed no increase in costs compared to estimated costs for only hospital care. Annual
productivity losses due to 25 parents' absenteeism from work, estimated from questionnaire-based
data, showed continued productivity losses during periods of HCS.
With trustful alliances between families, HCS and paediatric departments, cost-sustainable countybased HCS can be provided with high levels of family acceptability and positive effects on family
life and health in sick children of various ages, illnesses and stages of illness. However, unequal
accessibility and utilization may jeopardize care based on child and family needs.

Sammanfattning
Mot bakgrund av osäkerheten om hur många barn i Sverige som växer upp med föräldrar som
har alkoholproblem genomfördes en litteraturöversikt inom området av den internationella
vetenskapliga litteraturen och av den nordiska "grå litteraturen", dvs. studier som inte publicerats i vetenskapliga tidskrifter. Tanken var att resultaten i dessa översikter skulle ligga till
grund för att ta fram skattningar av hur stor denna grupp av utsatta barn är i Sverige idag.
Översikten identifierade endast 23 vetenskapliga studier som skattat hur många barn som växer
upp med föräldrar som har alkoholproblem. Dessa studier var begränsade till USA, Norden och
Storbritannien. Genomgången av nordisk grå litteratur identifierade ytterligare 9 studier.

Abstract
Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

Avhandling

Syfte
Avhandlingens övergripande syfte är att undersöka hur intensivvårdsdagboken upplevs av närstående och vårdpersonal inom intensivvård samt att bidra till utvecklingen av nationella riktlinjer avseende dagbokens utformning, innehåll och tillämpning.
Delsyften
I Att undersöka hur närstående upplever en intensivvårdsdagbok, när en
sjuk familjemedlem vårdas på IVA.
II Att undersöka hur närstående upplever en intensivvårdsdagbok, när den
sjuke familjemedlemmen inte överlever vistelsen på IVA.
III Att undersöka hur vårdpersonalen upplever användandet av
intensivvårdsdagbok.
IV Att undersöka tillämpningen av intensivvårdsdagbok på olika
intensivvårdsavdelningar i Sverige samt bidra till riktlinjer när det gäller
dagbokens utformning, innehåll och användning.

Abstract [en]
Aim: The overall aim of the thesis was to explore how the Intensive Care Unit (ICU) diary was experienced by family members, family members of non-survivors and nursing staff in the ICU setting, thereby contributing to the development of national clinical practice guidelines regarding the structure, content and use of the ICU diary.
Methods: A qualitative design was employed for all four studies: a hermeneutic approach was adopted in studies I and II, whilst a qualitative descriptive design with the use of focus groups interviews was chosen in study III. An Instrumental Multiple Case Study design was carried out in study IV.
Main Findings: The diary symbolised the maintenance of relationships with the patients and was a substitute for the usual opportunities for communication. The diary was instrumental in meeting the needs of the majority of participant family members. The diary provided the means to be present at the patient's bedside, to feel involved in caregiving, to maintain hope and to relay relevant information. If the critically ill family member did not survive the stay in the ICU, the diary acted as a form of bereavement support by processing the death of the patient. Nevertheless, some family members found the diary too public an arena to write in as the diary entries indicated visiting patterns which in turn provoke feelings of guilt when the visits were infrequent. Further, not knowing what to write was another source of pressure.
Nursing staff experienced that writing diaries often felt meaningful and led to an increased motivation and engagement in patient care and family support. They expressed that they felt they did something good for the patient and family members. Thus, the diary can be seen as a way to promote person-centred care, where family members were offered to participate in the care. However, in the absence of guidelines or clear guidelines about the use of an ICU diary, then not many patients actually received a diary.
Conclusions: Practice guidelines concerning ICU diaries would help to ensure the more widespread and consistent use of diaries for all ICU patients. As family members may benefit from the diary, even if the patient may not always be able to do so. The ICU diary can be seen as a tool to help promote person-centred care by directly involving family members and providing a human touch, thus helping to counterbalance the highly technical physical environment of ICU.

The purpose of this paper is to reflect on carers' experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

Design/methodology/approach
This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas' concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

Findings
Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers' ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

Originality/value
Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers' needs and ideas, and at the same time balance this with proposed research outcomes.

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

Abstract [en]
Background: The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. The aim of this paper was to describe the partners' experiences of living with a person with chronic illness and how they manage everyday life.

Methods: A descriptive design with a qualitative approach was used. A purposive sample of 16 Swedish partners with a chronically ill spouse were interviewed. The interviews were recorded, transcribed, and analyzed using qualitative content analysis.

Results: Four main themes were identified: Managing challenges in daily life,' Seeking support and use own capabilities to manage life,' Appreciating the good parts of life' and Adapting to constant changes and an uncertain future'. Their experiences of support from formal care providers varied; they expressed the need for more assistance from the health care sector.

Conclusions: The partners experienced many challenges in everyday life when providing informal care for their chronically ill spouse. This affected both their physical and psychological health, as they had limited time for themselves. The partners seemed to receive more support from their informal network than from formal care providers. In handling daily life, the partners balanced demands and resources to identify possibilities to move forward and find meaning in life. This is congruent with theories by Antonovsky, and Folkman and Lazarus that describes meaningfulness and how to handle challenges in everyday life.

Background: The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. The aim of this paper was to describe the partners' experiences of living with a person with chronic illness and how they manage everyday life. Methods: A descriptive design with a qualitative approach was used. A purposive sample of 16 Swedish partners with a chronically ill spouse were interviewed. The interviews were recorded, transcribed, and analyzed using qualitative content analysis. Results: Four main themes were identified: Managing challenges in daily life,' Seeking support and use own capabilities to manage life,' Appreciating the good parts of life' and Adapting to constant changes and an uncertain future'. Their experiences of support from formal care providers varied; they expressed the need for more assistance from the health care sector. Conclusions: The partners experienced many challenges in everyday life when providing informal care for their chronically ill spouse. This affected both their physical and psychological health, as they had limited time for themselves. The partners seemed to receive more support from their informal network than from formal care providers. In handling daily life, the partners balanced demands and resources to identify possibilities to move forward and find meaning in life. This is congruent with theories by Antonovsky, and Folkman and Lazarus that describes meaningfulness and how to handle challenges in everyday life.

Background: Given close genetic and emotional connections between a twin pair, the death of a co-twin sibling may considerably affect the mental health of the surviving twin. However, evidence from population-based cohort studies is currently lacking. Methods: Based on the Swedish health registers, we identified 4528 exposed twins whose twin sibling died between 1973 and 2013. For comparison, 22,640 matched unexposed twins (i.e., had twin sibling but didn't experience such a loss) and 4939 full siblings of these exposed twins were included. Controlling for multiple confounders, we used Cox models to estimate hazard ratios (HRs) with 95% confidence intervals (CIs) of clinical ascertained psychiatric disorders after loss of a co-twin. Results: The median age at a co-twin loss was 59 years. Compared to the unexposed twins, exposed twins were at increased risk of psychiatric disorders (HR = 1.65 [95% CI 1.48–1.83]). The association seemed stronger for loss of a monozygotic twin (HR = 2.02 [95% CI 1.56–2.61]) than loss of a dizygotic twin (HR = 1.46 [95% CI1.27–1.67]), and was evident after loss by natural causes (HR = 1.49 [95% CI 1.32–1.69]). Additionally, such risk was most pronounced during the first year after loss and when loss occurred at young age. The HR was 1.55 (95% CI 1.31–1.82) when compared exposed twins to their full siblings who also exposed to loss of a normal full sibling due to the death of the deceased twin. Conclusions: Losing a co-twin is a strong life stressor indicated by the increased subsequent risks of psychiatric disorders among the surviving twins

This study investigated sibling relationships of children with autism compared to children with Down syndrome and siblings of normally developing children. Ninety siblings (30 per group) between the ages of 8 and 18 participated in this study. Results indicated that sibling relationships in families of children with autism were characterized by less intimacy, prosocial behavior, and nurturance than those of the two comparison groups. Both siblings of children with autism and siblings of children with Down syndrome reported greater admiration of their sibling and less quarreling and competition in their relationships relative to normally developing comparison children

Abstract:
Background Most research on parental bereavement and health have analysed health consequences of parental loss in childhood, while collateral health in adulthood has been less studied. Methods Using register-based population data from Finland, we analyse adult offspring aged 18–50 years with discrete-time hazard models that adjust for offspring and parental socioeconomic and demographic characteristics. In focus are adult children whose parents were alive and lived together at the beginning of the observation period. We compare two culturally distinct but otherwise similar ethno-linguistic groups, Finnish speakers and Swedish speakers. Results The results suggest that bereaved men have an approximately 30% higher death risk than non-bereaved men, while there is practically no difference in women. Associations between parental and child deaths are, as expected, stronger for concordant causes of death than for discordant causes of death. However, some associations for discordant causes of death remain, which may indicate causality. Among Swedish speakers, who have notably higher family stability than Finnish speakers, the death of one or both parents shows a stronger association with own mortality. Conclusions The estimated associations found are generally larger than in the neighbouring country Sweden, which may be due to a stronger obedience to traditional family values and patriarchal family roles in Finland. These findings suggest that the association between parental death and mortality in adult offspring may depend on the societal context as well as on cultural practices. These factors should be increasingly acknowledged in future studies on collateral health.

It is a challenge for registered nurses (RNs) to meet children and young people who have a parent diagnosed with cancer. These children often suffer from shock, anxiety, outrage, fear and stress. Recent studies indicate that when next of kin have a professional person to talk to, their wellbeing increases. Moreover, when these children are involved in their parent's care they also begin to trust the nurse caring for their parent. However, there is little known of how nurses respond to a child's needs. Thus, aim of this study was to describe RNs' experiences of encounters with children as next of kin to a parent diagnosed with cancer. A qualitative descriptive study based on semi-structured group interviews, with a latent content analysis was carried out. One theme, 'sense of security' including three categories 'balanced meeting', 'de-dramatize healthcare' and 'learn from one another' was identified. Beyond the categories, there are six sub-categories: 'sense of insecurity', 'caring approach', 'providing information', 'participation', 'processing and follow-up' and 'increased knowledge'. The findings of this study highlight the importance of strengthening the RN's ability to create a caring relationship with children as next of kin.

Depression är en av våra stora folksjukdomar. Man räknar med att omkring en tredjedel av alla har en depression någon gång under sitt liv. Vem som helst kan drabbas, ung, gammal, frisk eller sjuk. Den som är utvilad efter semestern eller den som är trött och sliten av ett påfrestande arbete. Ofta finner man ingen förklarande orsak, utan depressionen bara kom. Bara en tredjedel av de som drabbas söker hjälp. Symptomen kan vara svåra att känna igen. Här i boken ges en bild av hur en depression kan se ut för andra i den deprimerades omgivning. Om det går att upptäcka symptomen lite fortare, så kan fler söka läkare för diagnos och hjälp. Boken visar också hur man som medmänniska hjälper den som drabbats, hur man kan förebygga depressioner och återfall i nya depressioner, samt hur man kan mildra förloppet. Boken vänder sig både till den som är eller har varit deprimerad och till alla vars anhörig, vän eller arbetskamrat drabbats av en depression.

Demens är ett obotligt, fortskridande sjukdomstillstånd som förr eller senare leder till döden. Genom ökad kunskap och rätt verktyg hos personalen kan både den som är sjuk och närstående få uppleva bästa möjliga livskvalitet och en värdig tid i livets slutskede. Ytterst handlar det om att teamet samarbetar strukturerat för att skapa förutsättningar för god palliativ vård.

Den här boken utgår från förhållningssättet i palliativ vård vid demens som kan sammanfattas med tre ord. Hjärna för den kunskap som behöver finnas, hjärta för omsorgen och händer för den livsnödvändiga närhet som skapar trygghet, livskvalitet och ro inombords. Boken är förankrad i forskningen och baseras på nationella och europeiska riktlinjer. Varje temakapitel innehåller fallbeskrivningar och frågor för reflektion enskilt eller i grupp.

Målgruppen är sjuksköterskor, läkare och personal som arbetar med personer med demens. Boken kan också användas inom grund- och fördjupningsutbildningar.

Background: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them.Objective: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF.Methods: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis.Results: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future.Conclusions: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice.

Ålder: 6-9 år

Hela familjen står inför nya och stora utmaningar då den allvarligt sjuka Perla får komma hem. Fastän det är jobbigt att sköta lillasyster, vill Jakob delta efter bästa förmåga. Han är väldigt bra på att lugna ner henne, för han kan smeka och sjunga särskilt mjukt. Jakob vill att Perla tas med till skolans viktiga evenemang.– Det stör inte mig fastän de andra aldrig har sett en sådan baby som Perla. Jag kan nog förklara det för dem, säger Jakob. Sommarens värme och dofter omsluter hela familjen, också lilla Perla.

Att berätta för ditt barn om autism Att berätta för ditt barn om autismdiagnosen kan kännas skrämmande. Är det bra för barnet att veta? Hur berättar man det? Bör man informera andra? Boken Att berätta för ditt barn om autism ger dig råd, tips, exempel och material för att kunna ha bra samtal om ditt barns autism.

Doktorsavhandling

Introduction: The loss of a loved one is a distressing life event for family members which often affects psychosocial well-being. Young adults who have lost a parent may be a particularly vulnerable group of bereaved individuals. This age group is often characterized by a certain instability, as the individual has left childhood but has not yet established an adult life, which could further compromise psychosocial well-being after the death of a parent. Young adults who have lost a parent to cancer comprise a sparsely studied group, and increased knowledge about their needs is called for.
Aim: The general aim of this thesis was to explore the psychosocial well-being of family members in bereavement, with a special focus on young adults who have lost a parent to cancer.
Methods: Two different study populations were used to examine the overall aim of this thesis. In Study I, 25 family members who lost a loved one within a palliative care service were interviewed about their supportive interactions with health care staff and their emotional experiences associated with these interactions. The interviews were analyzed with qualitative content analysis. Studies II–IV involved 77 young adults, aged 16–28 years, who had lost a parent to cancer and who participated in a support group within the palliative care context. They responded to a comprehen-sive questionnaire at three time-points within the first 18 months after their parent's death. In Study II, loss- and restoration-oriented bereavement stressors, as well as psychosocial well-being, were analyzed with descriptive statistics. Study III investi-gated longitudinal variations in psychosocial well-being and Study IV examined the relationship between self-esteem and symptoms of anxiety and depression. In both of these studies, descriptive and analytical statistics were used.
Results: Study I showed that: clear information presented in an honest dialogue fosters certainty and security; empathetic and flexible encounters with health care staff promote feelings of warmth and comfort; patient- and family-oriented health care staff gave a sense of value; the atmosphere and physical environment contrib-uted to dignity and harmony; and bereavement support provided feelings of strength. Support groups for parentally bereaved young adults were mentioned as being espe-cially important. Studies II–IV revealed an overall poor psychosocial well-being, for example, many young adults reported symptoms of anxiety and low life satisfaction. However, normal levels of self-esteem and a strong belief in a meaningful future might indicate resilience in grief. Minor improvements in psychosocial well-being were found within the first 18 months after the loss. Higher self-esteem was shown to be associated with less symptoms of anxiety and depression.
Conclusion: The results support the suggestion that young adults who have lost a parent to cancer constitute a specific group in bereavement. The indicated resilience may protect the young adults from long-term problems despite their poor psycho-social well-being. Furthermore, supportive interactions that are perceived as helpful may contribute to the development of good psychosocial well-being.

This paper presents some of the key findings and recommendations of the report The Tasmanian Children's Project (TCP): The Needs of Children with a Parent/Carer with a Mental Illness, October, 1999. The TCP, a collaborative venture between the University of Tasmania's School of Nursing and the Mental Health Services - South, Tasmania (Department of Health and Human Services), is the first study in Tasmania to formally examine the needs of children where the parent/carer has a mental illness. The study is a modified replication and extension of the 1993/94 Victorian Children's Project. Extension aspects of the TCP included interviews with children (in addition to parents and service providers), the inclusion of data on both maternal and paternal mental illness and a broad definition of mental illness (beyond psychotic illness and major affective disorder). The report highlights the need to provide a range of programs that encourage the development of personal competency among children, parents, and other family members and those that emphasize interagency collaboration. Implications of this research for mental health nursing education and practice are also addressed.

BACKGROUND: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers.
METHOD: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence an subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings.
RESULTS: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiverburden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higherlevels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect.LIMITATIONS: Most of the studies included in this review were cross-sectional.
CONCLUSIONS: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.

Background: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child's RT are sparsely described. Objective: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child's RT. Intervention/Methods: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis. Results: The analysis revealed 5 categories summarizing the staff members' experiences. These include the following: experiences of various emotions; care for the child and the child's family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement. Conclusions: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential. Implications for Practice: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

Abstract 
The aim of this review was to describe research related to support interventions for adult family members of people with mental illness and the significance that support may have. The results indicate the importance of flexible and individualized forms of support from both professionals and people with personal experience as a family member of someone with mental illness. In many cases, the intervention studies revealed that family members' burden decreased, their knowledge of the disease and treatment increased, and their ability to cope with the situation was improved. The results highlight the importance of support both from professionals and peers.

Sammanfattning
Fallskador hos äldre är ett ökande problem i Sverige som orsakar stort lidande, liksom stora kostnader för samhället. Socialstyrelsen har det övergripande ansvaret för att sprida information om fallrisker och fallprevention till äldre. Nationellt kompetenscenter anhöriga (Nka) har sökt och beviljats medel från Socialdepartementet för utvecklings av en verktygslåda gällande äldres fallprevention. Verktygslådan ska riktas till anhöriga som vårdar eller stöttar äldre i hemmet.
Som ett första steg har en så kallad scopingstudie (hädanefter kallad kunskapsöversikt) genomförts i syfte att få en överblick över tillgänglig forskning och annan litteratur på området anhöriga och äldres fall/fallrisk/fallprevention. Studien har utgått från den modell som utarbetades av Arksey och O'Malley (1) och som består av sex steg med en avslutande konsultation med målgruppen, i detta fall anhöriga.
Resultatet av kunskapsöversikten visar att det finns mycket lite forskning gällande anhöriga och deras syn på och upplevelse av närståendes fall, inte minst ur ett svenskt perspektiv. Totalt identifierades 49 relevanta källor, varav 42 vetenskapliga artiklar, en avhandling, ett dokument med tips och råd samt fem rapporter. Endast en svensk vetenskaplig artikel identifierades. Analys av källorna visade att dessa främst berörde fyra huvudteman; Konsekvenser för anhöriga av närståendes fall, Anhörigas förhållningssätt och strategier, Information, utbildning och stöd till anhöriga gällande fallprevention samt 4) Involvering av anhöriga i äldres fallprevention. De fyra huvudtemana kategoriserades i 15 underkategorier vilka beskrivs i kapitel 3. Ett tydligt resultat av kunskapsöversikten är att behovet av stöd och information till anhöriga, liksom behovet av att involvera dem betonas men att det finns få exempel på att så faktiskt har skett.
För att verifiera resultatet i en svensk kontext genomfördes steg 6 i Arkseys och O'Malleys modell (1) i form av fokusgrupper och intervjuer med totalt 30 anhöriga. De intervjuade bestod av makar och barn till äldre. Resultatet av konsultationen visade att det råder stor överensstämmelse med de internationella studierna. Dock tyder intervjuerna på vissa kulturella skillnader som vore intressant att studera vidare, exempelvis användandet av tvång och begränsningar som förefaller mindre vanligt bland de anhöriga som intervjuats. Istället betonas självständighet och den äldres möjlighet till delaktighet och livskvalitet. Anhöriga ger också några exempel på hur de har fått stöd från kommunen vilket i dessa fall har bidragit till deras egen kunskap och trygghet. Under fokusgrupper och intervjuer behandlades också behovet av information/stöd och den verktygslåda som Nka ska ta fram i samarbete med anhöriga. Exempel på kunskap/behov som anhöriga lyfter är:
- Information om fallrisker i hemmet och utomhus samt tips på vilka åtgärder anhöriga kan göra för att minimera riskerna.
- Information om vad anhöriga bör tänka på och vart de kan vända sig för att få
råd och stöd, exempelvis Apoteket, sjukgymnast, äldresjuksköterska, anhörigkonsulent etc.
- Nationellt nummer för fallpreventiva frågor, gärna kopplat till 1177.

Hur informationen ska förmedlas skiljer sig åt mellan intervjuade makar och barn till äldre, där de äldre anhöriga föredrar muntlig information i hemmet medan yngre är mer benägna att själva söka information på internet. Anhöriga lyfter också behovet av en utbildning om fallprevention för professionella samt material riktat till föreningarna att sprida till sina medlemmar.

De flesta människor som drabbas av svåra psykiska problem återhämtar sig, helt eller delvis. Att återhämta sig betyder inte att man nödvändigtvis är fri från alla symtom utan kan även innebära att man kan hantera dem och leva ett acceptabelt liv. Bland läkare, vårdpersonal och även bland dem som själva har psykiska problem finns en utbredd pessimism om möjligheterna att återhämta sig. Men i dag har vi tillgång till forskningsresultat som motsäger föreställningar om de psykiska störningarna som varande livslånga, kroniska sjukdomar. Forskning visar att de flesta människor som exempelvis fått psykiatrins mest belastade diagnos – schizofreni – återhämtar sig.
Vad hjälper människor med svåra psykiska problem att återhämta sig? Vad gör de själva, och vad kan andra – professionella, anhöriga, närstående – göra för att bidra till denna process? Boken resonerar kring professionalitet och vad ett återhämtningsinriktat professionellt arbete kan innebära. Återhämtning är en unik individuell process. Helt olika insatser kan bidra till återhämtningsprocessen för olika personer och för samma person i olika perioder. Den kan därför aldrig reduceras till en metod som kan tillämpas lika på flera patienter. Boken önskar förena individernas – brukarnas – erfarenhetsbaserade kunskap med kunskap från forskningen. Utgångspunkten är att människor återhämtar sig från svåra psykiska problem och att deras egna berättelser om återhämtningsarbetet erbjuder trovärdig kunskap.

Boken vänder sig dels till brukare och närstående, dels till personal verksam inom psykiatri och socialtjänst. Den är också avsedd som kursbok för högskolestuderande inom områdena socialt arbete, psykologi, vård och medicin. Boken används dessutom som lärobok/komplement till cirkelmaterialet vid studiecirklar inom ramen för Återhämtningsprojektet (som drivs av Riksförbundet för Social och Mental Hälsa [RSMH], Forskningsstiftelsen Humlan och FoU-enheten vid SPO Psykiatrin Södra, Stockholms läns landsting) som i första hand löper under åren 2004 och 2005.
Alain Topor är leg psykologi, fil dr och chef för FoU-enheten vid SPO Psykiatrin Södra inom Stockholms läns landsting. Han är även forskningschef på institutionen för socialt arbete, Stockholms universitet. Han har tidigare arbetat inom socialtjänst och psykiatri som familjebehandlare, behandlingsansvarig, handledare samt med forskning och utveckling inom socialtjänsten och psykiatrin.

Anhörigvård innebär att det i princip är samma person som hela tiden är huvudansvarig för vårdinsatsen. I en tidigare artikel har visats att många kommunalt anställda anhörigvårdare upplever bundenheten i sitt arbete. Här fokuseras i stället arbetets ljusare sidor - förekomsten av glädje, stimulans och tillfredställelse. Analysen ger vid handen att frånvaron av arbetsglädje bl.a. ssammanhänger med upplevelsen av bundenhet. Samtidigt framkommer att en annan faktor har en ännu mer avgörande betydelse: uppskattning från omgivningen. Det visar sig också att känslan av att vara uppskattad är relaterad till hur anhörigvårdarens ekonomiska situation förändrats sedan arbetet blev betalt.

Den moderna förälderns lott är att ständigt reflektera över sig själv - som förälder, som partner, som könsvarelse osv. Värderingarna hemma och på jobbet är olika, kraven från båda håll är alltid stora och kvinna och man förväntas leva jämlikt. Föräldrar i dag känner sig splittrade och otillräckliga. I denna mångtydiga situation måste vardagen fungera. Det är då de traditionella rollerna kommer till användning igen, men på nya villkor.

De flesta i vårt land säger sig stå bakom ett jämställdhetsideal, men hur lever vi egentligen i praktiken? Den här boken lyfter fram familjen som en plats där jämlikheten sätts på undantag. Boken består av två delar. Den första handlar om den svenska välfärdsstaten i ett familjeperspektiv och kulturella föreställningar kring kvinnligt och manligt. Teorier om familj, kön och föräldraskap i det moderna samhället presenteras och problem inom den empiriska forskningen diskuteras.

I del två analyseras hur vardagen ter sig för ett trettiotal unga barnfamiljer som författarna följt under mer än två år. Resultatet visar hur svenska föräldrar ser på bland annat barnuppfostran, hem- och lönearbete, kvinnligt respektive manligt. Samtliga föräldrar sätter upp barnens bästa som det viktigaste målet i sina liv, men mödrarna väljer andra sätt att förverkliga det än fäderna. I ett särskilt avsnitt analyseras moderskapet. Där framträder det dåliga samvetet som ett tidens tecken och att säkerhet i modersrollen nästan alltid förutsätter en trygg förankring på arbetsmarknaden.

The frequency of the use of coping behavior by wives of alcoholics was found to be related to their husband's drinking outcome. In general, a high frequency of coping behavior was associated with a poor outcome, but some components of coping behavior were more likely than others to be linked with a poor prognosis.

This book presents findings from recent policy oriented research undertaken by the EU's Observatory on Ageing and Older People: the most definitive account to date of socio-economic policies affecting older people and the extent of their social integration in European society. The book also presents the results from a specially commissioned Eurobarometer survey of public attitudes to ageing and older people conducted in twelve European Union countries. Overall it provides a unique and comprehensive portrait of how older people are perceived by the general public in the EU and how they view themselves and the ageing process. The book criticizes European countries for failing to come to terms with the fact of societal ageing and challenges them and the EU itself to ensure the social integration of older people

ett material avsett att ge en fullständigare förståelse för människan, speciellt gravt förståndshandikappade

Boken handlar om vad som händer när de anhöriga, aktiva som passiva, och sjukhemmets eller hemtjänstens personal på olika sätt konfronteras med varandra.

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.

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

In the wake of recent conflicts in Russia and the former Yugoslavia, ethnic terrorism and ethnic cleansing have become household words. Yet we are at a loss to find solutions to such struggles. In Bloodlines, Vamik Volkan, a world-renowned psychiatrist specializing in international relations, explores ethnic violence by examining history and diplomacy through a psycho-analytic lens.Dr. Volkan leads the reader on investigative tours of battlegrounds in the Middle East, Russia, Turkey, Cyprus, the Baltics, and the Balkans. In Serbia, he discovers that the Battle of Kosovo, fought in 1389, is the rallying cry for modern nationalists, who view the past as prophecy. In Turkey, PKK terrorist leader Apo reveals that he still considers himself an unloved child and orders his army of Kurdish women to remain virgins because of his own disgust with "unclean" adult behavior. In Latvia, after the dissolution of the USSR, Dr. Volkan learns that ethnic Latvians plan to disinter corpses and segregate cemeteries in an attempt to establish a national identity separate from that of Russia. Drawing on a variety of disciplines, Dr. Volkan analyzes these issues of identity formation, perceived versus real threats, the persistence of past traumas, and the desire for revenge.The result is a work that lays the foundation for understanding the differences between ethnic groups as well as the common ground they share. Timely, brilliant, and gripping, Bloodlines gives fascinating insights into how personal identity intertwines with nationality, and why hatred of others becomes a part of our sense of self.

Children of alcoholics (COA's) are at increased risk for behavioral and emotional problems, including alcoholism. Research has helped guide the design of prevention and intervention programs aimed at reducing this risk. Currently, most such programs for COA's use a short-term, small-group format, often conducted within schools. Broad-based community programs are another promising option, but have not been sufficiently studied. Generally, interventions include alcoholism education, training in coping skills and social competence, social support, and healthy alternative activities. Increased interaction between basic research and intervention may lead to improved services for COA's.

Community-based rehabilitation (CBR) recognizes that in the secure, loving environment of his/her own home, the person with a brain injury and the family, provided with support and guidance, can effectively augment or supersede hospital-based rehabilitation. This paper will explore the methods used to establish a rehabilitation programme in the home, the initial moves, the family dynamics, the advantages, and some of the programmes required for the restoration of function of sensory, cognitive and motor abilities. The mobilization of the therapy workforce, including the use of extended family and trained volunteers from the community, is explained. The importance of volunteer meetings and the continuing education of the family and volunteers is emphasized. Respite care for the family and the aim of returning the family towards normality is considered. The enormous cost/benefit of the community-based rehabilitation is detailed, and comparative costs between this method and hospital-based rehabilitation are provided

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.

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 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

Adult children are a significant contingent of elder care providers; a number of these individuals simultaneously care for children of their own while coping with caregiving commitments. Unfortunately, there is a paucity of information regarding the caregiving impact on these children and young adults. Moreover, the possible positive consequences of caring for an impaired elder are rarely mentioned. The current study was undertaken to examine the potential positive caregiving experiences of adolescents and their perceptions of relational enhancement as a result of caregiving. Twenty adolescents aged 14-18 were interviewed and asked a series of semistructured questions concerning satisfaction related to caregiving. To be included, respondents had to be a child, grandchild, or niece/nephew of an Alzheimer's (or Alzheimer's Type Dementia) patient cared for by the adolescent's immediate family. Employing features of content analysis methodology, all interviews were audiotaped and transcribed verbatim. The results merged into four primary categories: 1) increased sibling activity/sharing; 2) greater empathy for older adults; 3) significant mother-adolescent bonding and 4) peer relationship selection and maintenance. The implications for future research and practice are discussed.

This article explores innovative and interactive ways of working with people who have severe learning disabilities, special needs and/or challenging behaviour who, despite the efforts of those who support them, are not able to respond to attempts to interact with them. It examines the possibilities of communicating by using people's own behaviours and outlines how these methods of interaction can be developed into a 'language' which people with these disabilities recognize and find motivating. Entering into a person's world in a way that is not confusing or threatening may allow him/her to move from solitary self-stimulation to shared activity. People with these disabilities will then become aware of a world outside their own (sometimes they are aware of this but are unable to make a connection between what they perceive and themselves), and begin to understand their relationship to it. Surprise is an important element as it shifts attention from the inner space to the source of the intervention. A number of examples illustrate a range of person-centred approaches and the variety of disabilities that may be assisted.

Abstract: This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Poddprofilen Nemo Hedén har skrivit den viktiga boken Beroende om sin väg ut ur missbruket. Kan du ha problem? Är en anhörig drabbad? Detta är en bok som kommer att göra skillnad. Beroendesjukdomen är en av våra stora dödliga folksjukdomar. Men trots att var tionde svensk är drabbad pratar vi nästan inte om den. Poddprofilen Nemo Hedén har gjort till sin livsuppgift att ändra på den saken.

Beroende är en djupt personlig fackbok med syftet att försöka hjälpa och inspirera människor. Nemo vill avliva alla tabun, missförstånd och fördomar som finns kring sjukdomen. En problematik som faktiskt dödar människor dagligen - helt i onödan. "Jag har skrivit en bok som jag hade behövt att läsa när jag var i missbrukets mörka klor. När jag kände mig ensammast och räddast i hela världen. När det kändes som att livet var slut och som att det inte fanns någon väg ut. Men boken är lika mycket för alla anhöriga. De får lida så otroligt mycket, trots att de är helt oskyldiga", skriver Nemo i förordet.

Boken är tematiskt upplagd och författaren berättar lyhört och kunnigt om alla aspekter av beroendesjukdomen. När är man i riskzonen? Vilken hjälp finns att få? Hur farligt är ett återfall? Vad innebär tolvstegsrörelsen? Hur återskapar man sanna och varaktiga relationer? Och kanske viktigast, hur förlåter man sig själv efteråt?

Som förälder till ett barn med neuropsykiatrisk diagnos känner du dig ofta ensam, missförstådd och som en krigare för ditt barn. Den här boken, skriven av två föräldrar till barn med diagnoser, erbjuder såväl igenkänning som enkla råd så att du själv kan må bättre och orka med npf-familjelivets utmaningar.Hur du tar svåra samtal med skolan, enkla tekniker för återhämtning, hur ni klarar parrelationen eller parerar välmenta råd från personer i omgivningen. När det känns som att nerverna sitter utanpå behövs konkreta verktyg!Författarna bjuder på personliga berättelser ur vardagen, både gripande och igenkännande, blandat med tips från experter på områden som stress och utmattning, svåra samtal samt familjestöd. Här finns hjälp för att orka med att vara en bra förälder, kunna släppa skam- och skuldkänslor och ha kraft över till dig själv. Boken är också till dig som är vän, anhörig och till dig som möter npf-föräldrar i din yrkesvardag, så att du kan stötta och hjälpa på bästa sätt.

'Jag tror fortfarande inte att jag riktigt vilat färdigt från barndomen. Jag undrar om jag någonsin kommer att göra det. Vila färdigt." Så skriver Jenny Jejlid när hon berättar historien om hur det är att växa upp med ett autistiskt och utvecklingsstört syskon. Idag är hon vuxen och arbetar inom omsorgsvärlden, och ser tillbaka på sin uppväxt som lillasyster till en äldre bror som inte var som andra. Hon berättar om när det onormala blir normalt, och när känslor av kärlek och hat blandas med skam och skuld. Men hon berättar också om vägen framåt, och om känslor av hopp.

Jag ställde frågor till mitt gossebarn när vi var ensamma:
- Vilka hemligheter bär du på min son? Vilket ursprung har din gåtfullhet? Vad känner du? Vilket liv finns inom dig? Är det mörk ångest? Känner du glädje? Ser du samma verklighet som jag, eller blir allt kaos inom dig? Vad tycker du om?'

Några månader efter att Fred föddes börjar misstankar växa hos hans mamma Maud. Den lilla bebisen följer inte riktigt samma utveckling som andra barn i hans ålder, och han är svår att få kontakt med. Han är utvecklingsstörd, hon är säker på det. Både sjukvårdspersonal och familj försöker muntra upp henne, det är säkert inget fel på pojken, alla barn utvecklas olika.

Ju äldre Fred blir desto tydligare blir det dock att han är annorlunda från andra barn. I 'Freds bok' berättar Maud om sin egen upplevelse av att ha ett barn med en utvecklingsstörning och autism, men hon berättar också om samhällets och omvärldens reaktioner på hennes älskade son. Detta är en sann berättelse om förtvivlan, sorg och rädsla, men också om lycka och hopp. Men framför allt annat är det en berättelse om kärleken mellan mor och son.

Abstract [en]

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15–17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020–2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Abstract [en]

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Background This study examined the association between early parental death and children’s subsequent mental health, years of schooling, and labour-market outcomes (ie, employment and earnings) in adulthood. Methods We used nationwide register-based data for Finnish citizens born between 1971 and 1986 (n=962 350). Logistic and linear regression models were used to examine the association of early parental death before the age of 21 years with subsequent mental health and labour-market outcomes in adulthood at ages 26–30. The estimated models accounted for an extensive set of demographic and parental characteristics based on longitudinal register data. Results Early-life parental death was found to be consistently associated with a higher risk of hospitalisation due to mental health disorders, higher use of mental health-related medications, and absence from work due to illness in adulthood. The associations were negative regardless of the gender of the child or parent, but the estimated odds ratios were usually quantitatively larger for males than females. When examining the type of outcome, we observed the largest quantitative effects were observed using substance-use disorders and intentional self-harm as outcomes. Moreover, we documented considerable reductions in years of schooling, employment, and earnings in adulthood. Conclusions Parental death before the age of 21 was significantly associated with an increased risk of being diagnosed with a mental disorder and lower level of economic well-being measured by labour-market success in adulthood.

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

Abstract

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

Abstract [en]

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

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

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

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

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

Abstract [en]

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

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

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

Antologi

Stora anhörigboken samlar insikter från en bredd av ledande experter inom området anhörigomsorg. Den belyser anhörigas betydelsefulla roll och den belastning de upplever i sina strävanden att tillhanda hålla omsorg, kontinuitet och kärlek när samhällets resurser inte räcker till. Boken lyfter fram riskerna för anhörigas egen hälsa, deras ekonomiska utsatthet och sociala stigmatisering samt den betydande överrepresentationen av kvinnor som vårdare. Genom att belysa vikten av ett mer organiserat samhällsstöd för anhöriga och erkänna deras plats som samhällsbärande grupp, erbjuder boken en djup gående diskussion om en oundviklig aspekt av livet - att vara anhörig.

Stora anhörigboken vänder sig till alla som i sitt nuvarande eller framtida yrke möter personer som är just anhöriga oavsett orsak till anhörigskapet.

Sammanfattning
Syftet med denna studie var att undersöka anhörigkonsulenters erfarenheter av arbetet med
anhörigstöd samt upplevelsen av samverkansprocesser med andra aktörer. Studien gjordes med en kvalitativ ansats där empirin samlades in genom sex semistrukturerade intervjuer med
anhörigkonsulenter i olika kommuner i Sverige. Empirin analyserades och sammanställdes genom
en tematisk analys. Vidare analyserades resultatet i relation till studiens teoretiska utgångspunkter
vilka var det salutogena perspektivet och tillhörande känslan av sammanhang [KASAM] samt
strukturella aspekter av samverkan. Resultatet visar att anhörigkonsulenterna upplever anhörigas
behov som varierande utifrån deras skilda situationer. Tre övergripande behov uppfattas av
anhörigkonsulenterna vilka är ett informationsbehov, behov av nya perspektiv och behov av att
sätta sig själv i fokus. Resultatet visar att anhörigkonsulenterna upplever att de arbetar med ett
individuellt utformat stöd för att möta anhörigas stödbehov men att arbetet görs inom vissa
fastställda ramar. Det finns generellt tre insatser som erbjuds anhöriga vilka är individuella samtal,
gruppsamtal och aktiviteter av olika slag. Några kommuner erbjuder även andra insatser vilket
tyder på att stödet till anhöriga varierar mellan olika kommuner. Anhörigkonsulenterna upplever
samverkan som individberoende men som en stor och viktig del av arbetet, dels för att nå ut till
anhöriga, dels för att implementera anhörigperspektivet internt inom kommunerna.

Abstract

Abstract

Denna rapport har tillkommit för att få en förståelse för hur anhörigstöd bedrivs i
Sjuhäradskommunerna och hur anhörigas situation ser ut. Vi har tagit del av både anhörigasoch anhörigkonsulenternas perspektiv för att belysa anhörigfrågan. Studien är finansierad av
FoU Sjuhärad Välfärd som är ett kompetenscentrum för forskning och utveckling inom
kommunernas välfärdsområden. Ägarparter är Högskolan i Borås, Borås Stad samt
kommunerna Bollebygd, Herrljunga, Mark, Svenljunga, Tranemo, Ulricehamn och Vårgårda.
FoU Sjuhärad vill bidra med kunskap som skapar värde för de som bor i Sjuhäradskommunerna och för de som arbetar inom välfärdsområdet. Vår förhoppning är att rapporten
ger ett sådant bidrag men också att kunskapen sprids och är till nytta för policyskapare,
politiker och tjänstemän med intresse för anhörigas situation och anhörigstöd, i andra
kommuner och/eller på andra myndigheter.

Föräldrarkraften är en informativ bok som är oumbärlig för föräldrar till barn med neuropsykiatriska funktionsvariationer. Författaren förklarar olika diagnoser, vad de innebär och vilka problem som är relaterade till dem.Boken är ett stöd för dig som är förälder och som tvivlar på om du som förälder räcker till och gör rätt. Den kommer hjälpa dig förstå varför du handlar och agerar som du gör samt öka förståelsen för ditt barn.Boken innehåller olika fallbeskrivningar där barn och föräldrar kommer till tals och berättar om sina erfarenheter. Du får också råd och verktyg kring hur du som förälder kan agera och tänka för att stödja ditt barn. Nathalie Hult är legitimerad psykolog och har flerårig erfarenhet inom barn- och ungdomspsykiatrin.

Rapport 9 från projektet ”Barn som anhöriga”, CHESS,
Institutionen för Medicin Solna, Karolinska Institutet, Lnu, Nka

Detta är den nionde rapporten i projektet ”Barn som anhöriga”, som genomförs av CHESS och Institutionen för Medicin Solna, Karolinska Institutet, i samarbete med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar. Rapportens syfte är att belysa de sociala livsvillkoren avseende ekonomi och familj för barn som växer upp med föräldrar som drabbas av fysisk eller psykisk sjukdom eller har missbruksproblem.

Ulrika Harmsen var strax över 40, hade man och tre barn och arbetade som speciallärare när hon ramlade olyckligt på jobbet. Fallskadan orsakade en hjärntrötthet som inte ville gå över. Läkarna var förbryllade och utredning efter utredning gjordes utan att man förstod vad det var för fel. Under tiden var Ulrika sjukskriven och tvingades inreda ett tyst rum hemma där hon kunde återhämta sig efter aktiviteter som tidigare hört till vardagen, som att åka och handla eller hämta barnen i skolan. Men den 15 april 2020 kom beskedet hon aldrig hade väntat sig att få höra: Du har drabbats av Alzheimers sjukdom.

Allt blev svart den dagen och Ulrika sögs in i ett mörker av depression. Fanns det ens någon mening att leva vidare när hon ändå skulle dö, förr snarare än senare? Och samtidigt hade hon en familj och tre fina döttrar som älskade och behövde henne. För dem ville hon kämpa vidare. Men hur får man tillbaka livsglädjen när man vet att sjukdomen bryter ner en och gradvis gör en sämre för varje dag?

Ulrika Harmsen berättar öppet och ärligt om hur det är att få diagnosen alzheimer i ung ålder, om att tvingas berätta det värsta för sina barn och om att hitta redskap i vardagen för att hantera sjukdomen. Det här är historien om att få en dödsdom, men också om att hitta lusten att leva igen.

Prior studies emphasize the value of friends' support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018-2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.

Abstract
Aims and objectives
The study aim was to explore the use of an Intensive Care Unit (ICU) diary within four different ICUs units in Sweden and thereby contribute to practice guidelines regarding the structure, content and use of an ICU diary.
Background
ICU diaries are used to aid psychological recovery among critical care patients, but differences remain in diary writing both within and across countries. Few studies have focused on the combined views and experiences of ICU patients, family members and nursing staff about the use of ICU diaries.
Design
An instrumental multiple case study design was employed.
Methods
Three focus groups interviews were carried out with 8 former patients and their family members (n = 5) from the research settings. Individual interviews were carried out with 2 patients, a family member and a nurse respectively. Observations, field notes, documentary analysis and conversations with nursing staff were also conducted. Consolidated criteria for reporting qualitative research (COREQ) was followed.
Results
The qualitative findings firstly consisted of a matrix and descriptive text of the four ICU contexts
and current practices. This highlighted that there were similarities regarding the aims and objectives of the diaries. However, differences existed across the case study sites about how the ICU diary was developed and implemented. Namely, the use of photographs and when to commence a diary. Second, a thematic analysis of the qualitative data regarding patients’ and family members’ use of the ICU diary, resulted in four themes: i) the diary was used to take in and fully understand the situation; ii) the diary was an opportunity to assimilate warm, personalised and human care; iii) the diary was used to manage existential issues; and iv) the diary was a tool in daily activities.
Conclusions
Analysis of the instrumental case study data led to the identification of core areas for inclusion in ICU diary practice guidelines. Introduction

Socialstyrelsen har regeringens uppdrag att presentera ett förslag som möjliggör en kontinuerlig nationell uppföljning av anhörigperspektivet inom hälso- och sjukvården och omsorgen samt av det stöd som kommuner och regioner erbjuder anhöriga. Uppdraget handlar om att analysera möjligheterna att inhämta resultat på nationell nivå i syfte att följa anhörigperspektivet och stödet till anhöriga samt att ge förslag på mått anpassade för att kunna följa dessa områden. I denna rapport presenteras förslag på uppföljningsområden hämtade ur den nationella anhörigstrategin samt förslag på mått, nyckeltal och indikatorer.

To a great extent, older people in Sweden, often with extensive care needs, are cared for in their own home. Support is often needed from both family and professional caregivers. This study aimed to describe and analyse different aspects of health, functioning and social networks, and how they relate to formal and informal care in the home among older adults. Analyses were performed utilising data from the OCTO-2 study, with a sample of 317 people living in Jönköping County, aged 75, 80, 85 or 90 years, living in their own homes. Data were collected with in-person-testing. Based on receipt of care, the participants were divided into three groups: no care, informal care only, and formal care with or without informal care. Descriptive statistics and multinomial regression analysis were performed to explore the associations between received care and different aspects of health (such as multimorbidity, polypharmacy), social networks (such as loneliness, number of confidants) and functioning (such as managing daily life). The findings demonstrate that the majority of the participants received no care at home (61%). Multimorbidity and polypharmacy were more common among those receiving some kind of care in comparison to those who received no care; moreover, those receiving some kind of care also had difficulties managing daily life and less satisfaction with their social networks. The multinomial logistic regression analyses demonstrated that age, functioning in daily life, perceived general health and satisfaction with the number of confidants were related to receipt of care, but the associations among these factors differed depending on the type of care that was received. The results show the importance of a holistic perspective that includes the older person's experiences when planning home care. The results also highlight the importance of considering social perspectives and relationships in home care rather than focusing only on health factors.

Home-based care is expanding, and we need to know more about what kind of support older adults need and how such support should be designed. One way to gain more knowledge is to study the experiences that underlie a nursing home application. However, older adults in need of nursing homes are often too weak to participate in research. Thus, this study aimed to describe the experiences of close relatives of the daily life of older adults in need of a nursing home. A qualitative approach was used, where fifteen relatives of nursing home applicants in central Sweden were interviewed using a study-specific interview guide. The interviews were analysed using thematic analysis. The findings are presented in one main theme "Being the person who manages a fragile life situation" with three underlying themes: Balancing and fulfilling expectations, striving to achieve a status quo, experiencing a breaking point, a change is inevitable, and waiting and moving into a nursing home, a period of tension. The main theme describes how the participants contributed to managing the older adults' life situation and acted as a representative in contacts with health and social care. They tried to offer support in their daily life but over time experienced a breaking point when ageing in place was no longer sustainable, resulting in a nursing home application. The rationale for a nursing home application was often a combination of the older adult's own wishes and the fact that their relatives felt there was a combined need for extensive care and physical proximity to staff, which cannot be provided in ordinary housing. Sometimes the decision to apply was also based on relatives no longer having the capacity to continue managing an older adult's fragile situation.

Abstract

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.

Abstract

Abstract

Abstract [sv]

Bakgrund: Sorg är en normal reaktion i samband med närståendes död. Sorg är inteen sjukdom men kan ge besvär som liknar dem som uppkommer vid sjukdom. Om sorgeninte kan hanteras av personen som drabbas av sorg kan den leda till kompliceradsorg och sorgeprocessen förlängs. Sjuksköterskor som arbetar inom vård och omsorgmöter anhöriga som upplever sorg i samband med närstående döende och död ochbehöver ha kunskap och förståelse för hur deras situation kan vara för att kunna geadekvat stöd för anhöriga i sorg.

Syfte: Syftet var att beskriva anhörigas upplevelser av sorg i samband med vuxen närståendesdöd.

Metod: En allmän litteraturöversikt baserad på vetenskapliga artiklar med kvalitativstudiedesign. Vetenskapliga artiklar söktes fram i databaserna Cinahl Complete, Pub-Med och PsycINFO. Artiklarna kvalitetsgranskades utifrån kvalitativa kvalitetskriterieroch analysen av studiernas resultat genomfördes utifrån Fribergs analysmetod för litteraturöversikter.

Resultat: Upplevelsen av sorg delas in i två kategorier och tio underkategorier. En känslomässigbelastning och att känna sig vilsen och oviss med underkategorierna Chockoch oförmåga att minnas, Smärta, Ångest och ledsenhet, Skuld och lättnad, Ensamhetoch saknad, Ovisshet samt Vilsenhet. Omgivningens agerande förvärrar och lindrarsorgen med underkategorierna Att mötas av personer som inte förstår, Att få informationsom ger förståelse samt Att få känslomässigt stöd.

Diskussion: Studiens kvalitet diskuteras utifrån trovärdighetsbegreppen tillförlitlighet,verifierbarhet, pålitlighet och överförbarhet. I resultatdiskussionen diskuteras de trecentrala fynden: upplevelser av skuld, ovisshet och betydelsen av känslomässigt stödvid sorg. Fynden diskuteras i relation till personcentrerad vård och sjuksköterskorsbehov av kunskap för att kunna möta personer i sorg.

Abstract

Background Children of refugees are often exposed to the consequences of parental post-traumatic stress disorder (PTSD), potentially leaving them vulnerable to intergenerational transmission of psychopathology. The present study aimed to determine whether parental PTSD is associated with childhood psychiatric morbidity among children of refugees.
Methods This study is a two-generation nationwide cohort study using the Danish Immigration Services database. We followed up children younger than 18 years with at least one refugee parent until psychiatric contact, end of the study, their 18th birthday, emigration, or death. We excluded children if their parents were diagnosed only with psychiatric diagnoses other than PTSD or if they had received a psychiatric contact before parental PTSD diagnosis.
Information on parental PTSD and offspring psychiatric morbidity was obtained from the Danish Psychiatric Central Research Register. We used Cox proportional hazards regression models to assess the risk of psychiatric contacts among children of refugees with PTSD compared with children of refugees with no psychiatric diagnosis.
Findings Between Jan 1, 1995, and Dec 31, 2015, 102010 refugees obtained residency permission in Denmark and 62 239 biological children of refugees were born in Denmark before Dec 31, 2015. 51793 were eligible and included in the study (median follow-up 7·15 years [IQR 3·37–11·78]); of these, 1307 (2·5%) children had a psychiatric contact. 7486 (14·5%) children of refugees were exposed to parental PTSD. Parental PTSD significantly increased the risk of
psychiatric contact in offspring (hazard ratio 1·49 [95% CI 1·17–1·89] for paternal PTSD, p=0·0011; 1·55 [1·20–2·01] for maternal PTSD, p=0·00084) after adjustment for sociodemographic variables.

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed.

Den mänskliga tillvaron är full av påfrestningar – motgångar, krav, konflikter och olika slags problem som måste lösas. Vad är det som gör att en del av oss klarar av svåra påfrestningar med hälsan i behåll – och till och med kanske växer och vidareutvecklas av det? Detta är den fråga Antonovsky ställer. Hans svar är att motståndskraften beror på vår känsla av sammanhang, KASAM (på engelska SOC, Sense of Coherence), dvs den utsträckning i vilken vi upplever tillvaron som meningsfull, begriplig och hanterbar. Han diskuterar hur denna känsla byggs upp hos barn och vuxna och på vilket sätt den inverkar på vår hälsa. Han presenterar ett testinstrument för att mäta den och han redogör för olika forskningsresultat som stöder hans tes om dess stora betydelse. Boken gavs ut 1991 i Sverige och har sålt i 40.000 exemplar sedan dess. Den har betytt mycket för vändningen inom medicinsk forskning, från en total koncentration på sjukdomsförloppet och patogenesen till ett studium av friskfaktorerna och salutogenesen.

Stroke is one of the oldest but least understood diseases, and it is one of the major public health problems facing the elderly. Recent epidemiological investigations have found that the incidence of stroke has been underestimated by about 50%, and that the burden of disease is highest in minority populations. Recent clinical and basic neuroscience research indicates that stroke is neither unpredictable nor irreversible. Many risk factors for stroke are readily identifiable, and evidence-based treatment may be used to reduce the likelihood of stroke among those at risk. Rapid diagnosis and evaluation of stroke and transient ischemic attack and their treatment, including surgery, anticoagulation, antiplatelet and other medical therapies, reduce the chance of recurrence. More aggressive treatment of blood pressure, even among patients who are not necessarily hypertensive, may also reduce the risk of future strokes. Once ischemic stroke has occurred, emergent therapy using thrombolysis may significantly reduce disability, even among the elderly. This review presents an update on definitions of stroke and its subtypes, stroke epidemiology, and the results of recent studies of stroke prevention and acute treatment.

It is believed that 28 million children nationally are affected adversely by parental alcoholism. To help them, we must identify them. A screening tool was developed and tested to identify adolescents experiencing difficulties because of a parents's drinking problem. The single question, "Has the drinking of either parent created any problem for you?", was given in a medical screening inventory at a teenage clinic. This was followed by an eight-question semistructured interview. Of the 37 patients screened, 57% had high interview scores, suggesting that a parent's drinking had created a problem for them. Their substantiating information was consistent with the literature describing the effects of alcoholics on their children. In contrast, those with low or medium scores consistently reported no problem because of a parent's drinking. High scorers had nearly twice as many somatic symptoms and health concerns as those not reporting a problem with parental drinking. Based on the high percentage of adolescents adversely affected by a parental drinking problem and the patients' responsiveness to specific direct questions, this type of semistructured interview may be useful as a teenage intake interview in a variety of settings. Such screening could allow early referral and interventions to treat the family in which there is alcohol abuse, this promoting healthier psychosocial development. This might also decrease the adolescent's risk of abusing alcohol. Such screening may help the physician to place vague, somatic complaints in a more meaningful perspective. Our method is a quick, brief screen for a common but easily overlooked, potentially serious family problem.

I propositionen föreslås ändringar i de nuvarande reglerna om vårdnad och umgänge. Ett syfte med de nya reglerna är att stärka barnens rättsliga ställning.
Enligt propositionen bör man på olika sätt främja en ökad användning av gemensam vårdnad. Sålunda skall makar efter en skilsmässa kunna fortsätta att gemensamt utöva vårdnaden om sina barn, ulan att domstolen behöver fatta något beslut. En nyhet är också att ogifta föräldrar som bor tillsammans med sina barn skall kunna få gemensam vårdnad genom en enkel anmälan liU pastorsämbetet.
De nya reglerna innebär vidare att föräldrar kan fråntas vårdnaden om ett barn när de gör sig skyldiga till missbruk eller försummelse vid utövandet av vårdnaden eller i övrigt brister i omsorgen om barnet på ett sätt som medför en beslående fara för barnets hälsa eller utveckling. Föräldrarna kan också i undantagsfall fråntas vårdnaden om ett barn som har rotat sig i ett fosterhem, om det är uppenbart bäst för barnet att vårdnaden flyttas över till fosterföräldrarna.
En utgångspunkt för de nya reglerna om umgänge är att barn har behov av goda kontakter även med en förälder som inte är vårdnadshavare. Ansvaret för alt detta umgängesbehov tillgodoses ligger i första hand på vårdnadsha­varen. En nyhet är att barnet har rätt till umgänge även med andra som står barnet särskilt nära.
De nya reglerna föreslås träda i kraft den 1 januari 1983.

BACKGROUND: Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services.
METHODS: We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis.
RESULTS: The main theme is "Non-palliative care" - health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care.
CONCLUSION: The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.

Abstract:
Treatment and support of people diagnosed with severe mental illness in Sweden takes place in out-patient psychiatric services or municipality services. Most of the responsibility for support in daily life are provided by the close family. One crucial matter is how to support these families. This research project aimed to investigate the Swedish construction with shared responsibility between county psychiatric care and municipality social care for consumers with severe mental illness affects actions in municipalities in relation to family support. Ten representatives from five municipality settings were interviewed. Five semi-structured interviews were analysed using a thematic analysis. The following themes emerged; One overarching theme, "a mismatch of paradigms", and sub-themes: (a) "accentuating differences", (b) "doubts about including the entire family in the same session" and (c) "lack of a uniform family support policy". We conclude that a shared mandate needs a dialogue between psychiatric and municipality services concerning this mismatch.

Abstract
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregiversexperienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

Abstract:
Objectives: Instruments for evaluating end‐of‐life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end‐of‐life care in Sweden. The VOICES (SF) [Views of Informal Carers – Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member. Methods: This study was performed based on translation and back translation, cross‐cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life‐limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording. Results: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable. Significance of results: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross‐national comparisons between different healthcare places and organisations.

Kapitel i antologi

Alla människor har ett eget apelsinträd. På vissa växer det många apelsiner och på andra bara några stycken. Men varje dag växer det nya. Varje apelsin ger ork att kunna göra olika saker. Som att klä på sig, äta, prata, duscha eller handla. Elinas mamma har inte så många apelsiner på sitt träd. Dom försvann en dag, för att hon orkat för mycket under en lång tid. En bok om utmattningssyndrom. Boken är tänkt som stöd för drabbade barnfamiljer.

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.

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.

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

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.

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.

Doktorsavhandling

Abstract [en]
Chronic obstructive pulmonary disease (COPD) is a major public health problem. Symptoms and comorbidities associated with COPD affect the whole body. Clinical guidelines for COPD recommend pulmonary rehabilitation (PR) including exercise training and education promoting self-management strategies. Despite the positive effects on health status, few people with COPD have access to PR. Electronic health (eHealth) has been seen as promising for increased access to evidence-based interventions. To increase the likelihood of a successful implementation, it is important to identity enablers and barriers that might affect implementation outcomes. The aim of this thesis is to explore the experiences, interactions and contexts of the management of COPD in primary care, as well as the design, experienced relevance, effect and expected usefulness of eHealth solutions. The thesis is based on four papers that have used qualitative, quantitative and mixed methods. Qualitative interviews (papers I, II, IV) and focus group discussions (paper IV) were analysed using qualitative content analysis (papers I, IV) and grounded theory (paper II). Quantitative data, collected using questionnaires (paper I) and in a systematic review (paper III) was analysed with descriptive statistics (paper I) and meta-analysis (paper III). The qualitative and quantitative findings in paper I and II were merged in a mixed methods design. Participants in the studies included healthcare professionals (papers I, IV), people with COPD (papers II, III, IV), their relatives (paper IV), senior managers representing primary care centres (paper I), and external researchers (paper IV). The findings in this thesis gave insight in the complex interactions within COPD management between the healthcare organisation (e.g. resources and priority), healthcare professionals (e.g. attitudes, collaboration and competence) and people with COPD (e.g. emotions, attitudes and coping). The healthcare organisation is fragmented with few resources and COPD care takes low priority. The healthcare professionals are Building COPD care on shaky ground (paper I), where the shaky ground is a presentation of the non-compliant organisation and other challenging circumstances. Driven, responsible and ambitious healthcare professionals wish to provide empowering COPD interventions through interprofessional collaboration, but are inhibited by their limited knowledge of and experience with COPD. People with COPD are (Re)acting in an ambiguous interaction with primary care providers (paper II), have limited knowledge and struggle with stigma, while they try to accept and manage their disease. The attitudes and support of healthcare professionals' are essential for necessary interaction and self-management strategies. For people with COPD, this can take different paths: either enhancing confidence with empowering support or coping with disempowering stigma and threat. eHealth solutions such as telehealth, have been used to provide interventions to people with COPD through phone calls, websites or mobile phones, in combination with exercise training and/or education. They show a significant effect on physical activity level, but not on physical capacity and dyspnoea (paper III). Healthcare professionals, people with COPD and their relatives, and external researchers report that, to be useful and relevant in clinical practice, an eHealth tool should be reinforcing existing support structures (paper IV). Furthermore, it needs to fit in the current routines and contexts and create a sense of commitment in its users. According to the participants, information about selfmanagement strategies, such as how-to videos are valuable, and need to help them identify themselves with the people in the videos. The participants regard eHealth as providing knowledge and support for self-management. In conclusion, there is a need for implementation of clinical guidelines for COPD in primary care in order to improve both the management of COPD, as well as the interaction between healthcare professionals and people with COPD. Several actions are needed to facilitate this implementation. The priority and status of COPD management in primary care need to be raised. In addition, more resources (e.g. healthcare professionals) for COPD interventions is required to enhance the conditions for interprofessional collaboration and patient participation. Furthermore, it is important to include physiotherapists in COPD management, considering the focus on exercise training and physical activity. Healthcare professionals in primary care need further training and more time to educate and empower people who have COPD. The use of eHealth may lead to improvements in patient outcomes, although more research on web-based interventions is required. User involvement in the development process of an eHealth tool increases its usefulness and relevance in clinical practice and everyday life. The findings from this thesis may guide implementation processes in primary care, as well as the development of eHealth tools for people with COPD or other long-term conditions.

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.

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.

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.

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.

Sammanfattning
Att få ett barn med funktionsnedsättning vänder upp och ned på tillvaron. När Sophie Dow får dottern Annie anar hon direkt att något inte är som det ska men det kommer att ta sexton år innan familjen till slut får ett fullödigt svar på gåtan. Under tiden lever familjen ett utmanande, utmattande men alldeles underbart liv tillsammans. Sophie Dows kamp för sin dotters rättigheter leder till grundandet av Mindroom, en organisation som framgångsrikt jobbar för barn och ungdomar med inlärningssvårigheter. När livet inte följer manus är ett inspirerande, personligt detektivdrama, där Sophie Dow med humor, glöd och oväntat stöd från såväl en Hollywoodregissör som brittiska kungahuset söker svar på frågan: Varför är inte alla hjärnor lika mycket värda?

Abstrakt Det blir allt fler äldre personer i samhället idag eftersom vi lever längre. Ett större antal äldre personer kan innebära att fler närstående blir involverade i den äldre personens livssituation och vård. Den personcentrerade omvårdnadsmodellen visar att närstående är en viktig resurs för den äldre och för den äldres välbefinnande. Idag ska närstående kunna vara ett naturligt inslag i vården av den äldre personen. Sedan år 2009 när nya bestämmelsen i Socialtjänstlagen kom, har vården ett ansvar att ge närstående stöd och vägledning. Detta leder till att en dialog mellan vårdpersonal och närstående är betydande för att främja den äldres hälsa, men också för att främja närståendes delaktighet och välbefinnande. Syftet med studien var att undersöka närståendes upplevelser av att ha en äldre person vid ett vård- och omsorgsboende. Studien har en kvalitativ studiedesign. Tre fokusgruppsintervjuer och två enskilda intervjuer genomfördes med sammanlagt 26 närstående till en äldre person på ett vård- och omsorgsboende. Intervjuerna analyserades med en konventionell innehållsanalys. Ett gott bemötande och en öppen kommunikation med vårdpersonalen gjorde att de närstående kände sig välkomna och sedda som en viktig del i vården. Närstående upplevde trygghet då de själva och den äldre personen kände sig hemmastadda på vård- och omsorgsboendet. Slutsats: Personalen har en betydelsefull roll för närståendes välbefinnande och delaktighet i vården på ett vård- och omsorgsboende.

Vem blir man, när man får veta att ens barn är nära att dö i en livshotande hjärtsjukdom? Vad kan man ta in och vad flyter förbi? Hur går tankarna för den som tvingas bo länge på ett sjukhus? Vad innebär det att leva och hur nära kan Döden stå utan att ta den man älskar?
"Nästan alla dagar grät jag" är berättelsen om en familj där sonen blir akut inlagd på sjukhus för hjärtsvikt. Dag för dag följer vi familjen på sjukhuset, totalt 313 dagar. Berättelsen bygger på en verklig händelse.

Funkisfamiljen är en ny barnboksserie för barn 6-9 år om hur det är att växa upp med ett syskon som har en funktionsnedsättning. Den handlar om huvudpersonen Vide, 8 år, samt syskonen Tintin, 5 år, och Mio, 10 år. Mio har en medfödd hjärnskada och kan inte gå eller tala.

Seriens första bok, Operation slutstirrat, handlar om bemötande och hur det känns när ett barn på skolgården undrar om Mio är en riktig människa. Hur ska Vide göra med alla som frågar, undrar eller stirrar på Mio? Samtidigt som det är pinsamt blir Vide väldigt arg när det händer och det händer ofta. Tillsammans med sin nya klasskompis och sina syskon försöker Vide komma på sätt att handskas med situationer som uppstår.

Boken är skriven av journalisten Anna Pella som har sin egen familj som förlaga till böckerna. Anna Pellas första bok När du ler stannar tiden är en dagbok till hennes dotter Agnes som föddes med en svår hjärnskada. Den har uppmärksammats i flera stora medier, bland annat i Svt:s program "När livet vänder".

Anna Forsmark som illustrerat boken använder humor, värme och mycket detaljer i sina illustrationer. Hon har tidigare illustrerat boken Lilla nej-boken och Lek istället för bråk: 64 lekar för att förenkla vardagen med barn.

Den här boken ger en introduktion till positivt beteendestöd (PBS), med huvudfokus på de två områden där PBS fått störst genomslag: för individer med svåra problemskapande beteenden och som förebyggande och verksamhetsövergripande förhållningssätt, framför allt inom skolan.

Abstract [en]

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers' negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers' negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.

OBJECTIVE: This study was to designed to examine the feasibility and preliminary outcomes of CARE: Caring About Relationships and Emotions, a 10-week, home-based, intervention to support married couples affected by dementia. METHODS: Fifteen older couples participated in a single group repeated measures feasibility study. Weekly, video-recorded conversations over 10 weeks were used to rate communication using the Verbal/Nonverbal Interaction Scale for caregivers and care receivers. RESULTS: Accounting for mental status of care recipients, the ratio of social to unsocial communication showed a significant improvement across sessions-an average of 4.46 points per session [β = 4.46, t(10) = 1.96, p = .039]. Spouse caregiver (CG) communication showed a significant decrease in the number of disabling communications with approximately .65 decreased comments per session [β = 0.654, t(11) = -2.61, p = .024]. CONCLUSIONS: At home dyadic, relationship-focused psychoeducational intervention to improve communication in spouses affected by dementia has the potential to improve communication outcomes. Creative ways of working with couples are needed to help them sustain their relationships and maintain their health.

Abstract
OBJECTIVE: To investigate the risk of psychiatric disorders among children of parents with cancer in a nationwide population-based setting. METHODS:
Based on Swedish national registers, the study included 101 339 children with parental cancer diagnosed either during pregnancy (N = 1047) or after birth (N = 100 292) that were born during 1983 to 2000. For each exposed child, we randomly selected 10 unexposed children from the general population after individual matching by year of birth and sex. The matched cohort was followed during 2001 to 2010. Clinical diagnoses of psychiatric disorders and use of prescribed psychiatric medications were identified for all children. Cox regression and logistic regression were used to evaluate the associations of parental cancer with psychiatric disorder diagnosis and psychiatric medication use, respectively. RESULTS: Parental cancer during pregnancy was not associated with the risk of psychiatric disorders overall, although paternal cancer during pregnancy was associated with a higher risk of psychiatric medication use among females. Parental cancer after birth was associated with higher risks of psychiatric disorder diagnoses, particularly stress reaction and adjustment disorders (males: hazard ratio [HR]: 1.24, 95% confidence interval [CI], 1.08-1.43; females: HR: 1.27, 95% CI, 1.14-1.41), and use of psychiatric medication (males: odds ratio [OR]: 1.09, 95% CI, 1.04-1.13; females: OR: 1.14, 95% CI, 1.10-1.18). The positive associations were stronger for parental cancer with poor expected survival and for parental death after cancer diagnosis.
CONCLUSIONS: Parental cancer, primarily the life-threatening cancer, might confer a higher risk of psychiatric disorders among children. These findings have potential implications for health care professionals in providing targeted support to children living with a parent with cancer.

Abstract
The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (α > 0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.

bstract [en]

Sweden is seen as a typical example of a social democratic welfare regime, with universal and generous welfare policies. However, in the last decades, there have been substantial reductions in the Swedish provision of care for older people. This study aimed to examine trends in sources of care-receipt in older people (77+) living in their own home and with a perceived need for help with two specific tasks: house cleaning and/or food shopping. Trends in care-receipt were examined in relation to gender, living alone, having children and socio-economic position. Data from the 1992, 2002 and 2011 data collection waves of the national study, Swedish Panel Study of Living Conditions of the Oldest Old (SWEOLD), were used. Response rates varied between 86 and 95 per cent, and the sample represents the population well. Trends and differences between groups were explored in bivariate and logistic regression analyses. There was a reduction in formal care-receipt regarding house cleaning and food shopping over the study period. It was more common for women than men to receive formal care, and more common for men than women to receive informal care. Reductions in formal care have affected older women more than older men. Still, living alone was the most influential factor in care-receipt, associated with a greater likelihood of formal care-receipt and a lower likelihood of informal care-receipt. It can be concluded that public responsibility for care is becoming more narrowly defined in Sweden, and that more responsibility for care is placed on persons in need of care and their families.

Statistiken visar att antalet personer med boendeinsatser fortsätter att öka. Ökningen är 11 procent jämfört med 2016. Det finns regionala skillnader i vilken omfattning kommunerna ger boendeinsatser. I Västmanland får åtta gånger fler boendeinsatser jämfört med i Blekinge.

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.

The spouses of people suffering from dementia are commonly first-in-line caregivers. This can have a considerable effect on their own lives, health and marriages. Several studies have focused on spouses' experiences, but very few have focused in any depth on their descriptions of themselves as subjects. Therefore, the aim of this study is to describe how spouse caregivers can express themselves when living with and caring for their partners with dementia. The study has a qualitative approach with a discourse analysis design and uses analytical tools such as rhetoric, subject positions and categorization. The results reveal three subject positions: as an actor, as a parent and as a survivor. The results show that as spouses struggle with external and internal clashes as subjects, they therefore need to develop coping strategies. They also experience pronounced loneliness and a risk to their own health. There is thus a need to support these spouses as individuals in their differing and changing needs.

Introduction: This study examines whether the use of a communication technology can enhance social connectedness among nursing home residents in Norway. The concept of social connectedness suggest that positive and significant interpersonal relationships can help reduce the risk of loneliness and social isolation among older adults and can be beneficial for both their health and overall well-being. In recent years, technology has been increasingly utilized as a method to overcome physical distances and to keep families connected. Although the use of digital solutions among older people has increased in recent years, few studies have addressed the use and impact of such technologies within a nursing home context.
Methods: A total of 225 residents participated in the study, making it one of the few quantitative studies that examine the use of communication technologies in nursing homes at such a large scale. The study combines two sources of data: (1) survey data collected over a 14-month period, in three different waves, at all public nursing homes in Oslo municipality and (2) a highly detailed weekly datastream from each Komp-device, which provides an objective measure of the frequency of contact between the residents and their families. The two sources of data were combined and analyzed using multiple regression analysis.
Results: The regression analysis revealed a positive and significant relationship between Komp use and increased social satisfaction among the residents. The results indicate that Komp is a feasible communication tool to help nursing home residents maintain relations with their families.
Discussion: The positive response to Komp among the residents suggests that when designed with the user's needs in mind, technology can indeed facilitate meaningful social interactions, even for those with limited technological experience. Such interventions can thus be crucial in bridging the gap between older residents and the outside world, effectively addressing their unique challenges of social isolation and disconnection from the broader community

Nationellt kompetenscentrum anhöriga, Nka, har fått i uppdrag av Socialdepartementet
att utveckla ett nationellt kunskapsstöd till föräldrar och anhöriga till barn och ungdomar med flerfunktionsnedsättningar. Syftet med kunskapsstödet är att underlätta kunskapsinhämtning, erfarenhetsutbyte och nätverkskontakter för anhöriga

Nursing research has been performed during the last 20-30 years, about the next of kin's vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin's relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

Aim and Objectives: To increase the understanding of next of kin's life situation in the context of supporting persons who are long term ill, disabled and/or older by describing their experienced burden and quality of life and also the relationship between QoL, burden and socioeconomic variables.

Methods: Cross-sectional, descriptive and correlative design. Eighty-four next of kin answered two questionnaires: the Caregiver Burden Scale and the Subjective Quality of Life.

Results: Next of kin experienced a high burden in their life situation although they, at the same time, experienced a good quality of life. In the results gender differences were found. Females next of kin to a higher extent were disappointed, more emotionally involved, and they also estimated their economic situation as more unsatisfactory than the males next of kin.

Conclusion: Healthcare personnel meet next of kin, persons in need of care, within all healthcare and social care in society.Therefore it is important to have a general knowledge and ability to understand the next of kin's life situation, thus making it possible to focus the nursing interventions on individual support regardless of the care receiver's diagnosis.

Alkoholfrågan är något som berör de flesta och många av oss bär på minnen och erfarenheter som vi kanske aldrig fått sätta ord på. Barns erfarenheter och upplevelser av alkohol har vi samlat i vår bok: Lyssna på barnen

Om föräldrar missbrukar, så leder detta ofta till att en väl bevarad familjehemlighet styr hela familjens liv. Genom föreläsningar och reportage berättar människor om sina egna erfarenheter.

Blå Bandet är en del av ett stort internationellt nätverk som i de flesta länder kallas Blå Korset. Våra systerorganisationer i Norge och Danmark, arbetar förutom med förebyggande arbete, också med vård och rehabilitering av missbrukare och deras familjer.

Den här antologin sammanfattar kunskapsläget och bidrar med ny kunskap om arbetsfördelningen mellan kvinnor och män och de konsekvenser som denna får för deras möjligheter på arbetsmarknaden.

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För femtio år sedan rådde huvudsakligen en mycket strikt arbetsdelning mellan makar. Den rådande normen var att mannen genom förvärvsarbete bar huvudansvaret för den ekonomiska försörjningen av familjen. Om det var ekonomiskt möjligt var hustruns huvudsakliga ansvar att ta hand om hem och barn. I början av sextiotalet var således en majoritet av de gifta kvinnorna hemarbetande och skötte i det närmaste allt hushållsarbete.

Mycket har hänt sedan dess och i dag är det mycket få kvinnor i Sverige som arbetar hemma på heltid. Den normförskjutning som skett har naturligtvis påverkat både män och kvinnor, även om omvälvningen onekligen varit störst för kvinnorna.

I dag utgör de hälften av förvärvsarbetskraften och fördelningen av omsorgs- och hushållsarbetet i familjen är väsentligt mycket jämnare än den var för femtio år sedan. Samtidigt kvarstår betydande könsskillnader exempelvis i arbetstid och lön vilka i sin tur är relaterade till kvarvarande könsskillnader i fördelningen av omsorgs- och hushållsarbete.

Abstract

Background

Bereavement by spousal death and child death in adulthood has been shown to lead to an increased risk of mortality. Maternal death in infancy or parental death in early childhood may have an impact on mortality but evidence has been limited to short-term or selected causes of death. Little is known about long-term or cause-specific mortality after parental death in childhood.

Methods and Findings

This cohort study included all persons born in Denmark from 1968 to 2008 (n = 2,789,807) and in Sweden from 1973 to 2006 (n = 3,380,301), and a random sample of 89.3% of all born in Finland from 1987 to 2007 (n = 1,131,905). A total of 189,094 persons were included in the exposed cohort when they lost a parent before 18 years old. Log-linear Poisson regression was used to estimate mortality rate ratio (MRR). Parental death was associated with a 50% increased all-cause mortality (MRR = 1.50, 95% CI 1.43–1.58). The risks were increased for most specific cause groups and the highest MRRs were observed when the cause of child death and the cause of parental death were in the same category. Parental unnatural death was associated with a higher mortality risk (MRR = 1.84, 95% CI 1.71–2.00) than parental natural death (MRR = 1.33, 95% CI 1.24–1.41). The magnitude of the associations varied according to type of death and age at bereavement over different follow-up periods. The main limitation of the study is the lack of data on post-bereavement information on the quality of the parent-child relationship, lifestyles, and common physical environment.

Conclusions

Parental death in childhood or adolescence is associated with increased all-cause mortality into early adulthood. Since an increased mortality reflects both genetic susceptibility and long-term impacts of parental death on health and social well-being, our findings have implications in clinical responses and public health strategies.

Kom igång med tecken! Det är aldrig för sent! Möjligheter med tecken för ungdomar och vuxna är boken som inspirerar, engagerar och berättar om fördelarna med tecken. Vardagsnära reportage varvas med fakta och kloka ord från personer som dagligen använder tecken i sin kommunikation. Bokens författare Maria Krafft Helgesson är musikterapeut och handledare i AKK och har många års erfarenhet av arbete med kommunikation och tecken.

The purpose of this paper is to analyse the extent to which length of residence in the country and country of origin are of importance to older immigrants' use of long-term care services compared to native older people. The analyses were conducted on a population of over 65s living in the Municipality of Copenhagen on 1st Jan 2007. Information was drawn from the administrative registers of the Municipality of Copenhagen on the population's use in 2007 of home care and of residential care in a nursing home. These data were combined by Statistics Denmark with demographic data, socio-economic data and data on the use of health services. It was found that older immigrants are less likely than ethnic Danes to use municipal long-term care services when other predisposing, enabling and need factors are controlled for. The difference is greatest between ethnic Danes and immigrants from non-western countries who have only lived in Denmark for a few years. The difference decreases the longer the immigrant has lived in the country. The findings may be explained, at least in part, by poorer language skills and poorer knowledge of the Danish welfare system among older immigrants and the fact that they are more likely to be cared for by relatives than ethnic Danes are. However, in the course of time language skills improve and knowledge of the system increases and life style with respect to care may approach that of older Danes

OBJECTIVES: Parental death during childhood has been linked to increased mortality and mental health problems in adulthood. School failure may be an important mediator in this trajectory. We investigated the association between parental death before age 15 years and school performance at age 15 to 16 years, taking into account potentially contributing factors such as family socioeconomic position (SEP) and parental substance abuse, mental health problems, and criminality.

METHODS: This was a register-based national cohort study of 772 117 subjects born in Sweden between 1973 and 1981. Linear and logistic regression models were used to analyze school performance as mean grades (scale: 1–5; SD: 0.70) and school failure (finished school with incomplete grades). Results are presented as β-coefficients and odds ratios (ORs) with 95% confidence intervals (CIs).

RESULTS: Parental death was associated with lower grades (ORs: –0.21 [95% CI: –0.23 to –0.20] and –0.17 [95% CI: –0.19 to –0.15]) for paternal and maternal deaths, respectively. Adjustment for SEP and parental psychosocial factors weakened the associations, but the results remained statistically significant. Unadjusted ORs of school failure were 2.04 (95% CI: 1.92 to 2.17) and 1.51 (95% CI: 1.35 to 1.69) for paternal and maternal deaths. In fully adjusted models, ORs were 1.40 (95% CI: 1.31 to 1.49) and 1.18 (95% CI: 1.05 to 1.32). The higher crude impact of death due to external causes (ie, accident, violence, suicide) (OR: –0.27 [90% CI: –0.28 to –0.26]), compared with natural deaths (OR: –0.16 [95% CI: –0.17 to –0.15]), was not seen after adjustment for SEP and psychosocial situation of the family.

CONCLUSIONS: Parental death during childhood was associated with lower grades and school failure. Much of the effect, especially for deaths by external causes, was associated with socially adverse childhood exposures.

BACKGROUND: Approximately half of all children with moderate to severe physical
disabilities have persistent sleep problems and many of these children need
parental attention at night.
AIM: To study whether sleep problems and need for night-time attention among
children with physical disabilities are associated with perceived parental
health, headache, psychological exhaustion, pain due to heavy lifting, night-time
wakefulness and disrupted sleep.
METHODS: We asked parents of 377 children with physical disabilities aged 1-16
years to complete a questionnaire about their own health. The children all lived
at home with both parents.
RESULTS: Both parents reported poor health, psychological exhaustion, more
night-time wakefulness and disrupted sleep when the child had sleep problems (P <
0.05). Mothers also reported more headache when the child had sleep problems (P =
0.001). Both parents reported more night-time wakefulness and disrupted sleep
when the child needed night-time attention (P < 0.01). In general, mothers
reported significantly poorer health, more night-time wakefulness, disrupted
sleep, headache and psychological exhaustion than fathers (P < 0.001).
CONCLUSIONS: Sleep problems need to be acknowledged within the paediatric setting
in order to prevent psychological exhaustion and poor health in mothers and
fathers of children with physical disabilities.

Introduction: The concept of participation has been extensively used in health and social care literature since the World Health Organization introduced its description in the International Classification of Functioning, Disability and Health (ICF) in 2001. More recently, the concept of social participation is frequently used in research articles and policy reports. However, in the ICF, no specific definition exists for social participation, and an explanation of differences between the concepts is not available.
Aim: The central question in this discussion article is whether participation, as defined by the ICF, and social participation are distinct concepts. This article illustrates the concepts of participation and social participation, presents a critical discussion of their definitions, followed by implications for rehabilitation and possible future directions.
Discussion: A clear definition for participation or social participation does not yet exist. Definitions for social participation differ from each other and are not sufficiently distinct from the ICF definition of participation. Although the ICF is regarded an important conceptual framework, it is criticised for not being comprehensive. The relevance of societal involvement of clients is evident for rehabilitation, but the current ICF definition of participation does not sufficiently capture societal involvement.
Conclusion: Changing the ICF's definition of participation towards social roles would overcome a number of its shortcomings. Societal involvement would then be understood in the light of social roles. Consequently, there would be no need to make a distinction between social participation and participation.

This study aims to explore the influence of paternal variables on outcome of behavioral parent training (BPT) in children with attention-deficit/hyperactivity disorder (ADHD). 83 referred, school-aged children with ADHD were randomly assigned to BPT plus ongoing routine clinical care (RCC) or RCC alone. Treatment outcome was based on parent-reported ADHD symptoms and behavioral problems. Moderator variables included paternal ADHD symptoms, depressive symptoms, and parenting self-efficacy. We conducted repeated measures analyses of variance (ANOVA) for all variables, and then analyzed the direction of interaction effects by repeated measures ANOVA in high and low scoring subgroups. Paternal ADHD symptoms and parenting self-efficacy played a moderating role in decreasing behavioral problems, but not in decreasing ADHD symptoms. Paternal depressive symptoms did not moderate either treatment outcome. BPT is most beneficial in reducing children's behavioral problems when their fathers have high levels of ADHD symptoms or high-parenting self-efficacy.

OBJECTIVE: Mutual support within the family is of great importance to maintain
its proper functioning. The study aim, which was based on a family system
approach, was to evaluate which variables are associated with patients' sense of
support within the family in the palliative care context.
METHODS: We recruited 174 adult patients (65% of those eligible) from six
palliative home care units, who had non-curable disease with an expected
short-term survival, such as disseminated cancer or non-malignant diagnosis. The
relationship between the endpoint and individual factors were evaluated in a
stepwise model-building procedure using generalised linear model (ordinal
multinomial distribution and logit link).
RESULTS: The respondents' ratings of their sense of support within the family
ranged from 1 (never) to 6 (always), with a mean value of 5.2 (standard deviation
1.06). Patients who less frequently sensed family support experienced more often
stress, worry about their private economy, lower self-efficacy, lower sense of
security with palliative care provided (lower ratings on subscales of care
interaction, mastery and prevailed own identity), more often anxiety, less often
perceived general well-being for closest ones and less often sense of support
from more distant family members. In the model building, three variables were
selected to predict the patients' sense of support within the family.
CONCLUSIONS: The dying patients' sense of support within the family related to
several factors, and these may help the palliative care teams to identify
patients at risk and to alleviate suffering, for example, through supporting the
closest family members.

OBJECTIVE:
Recent research suggests that not only parental psychopathology, but also parenting practices, have a role to play in the development of child posttraumatic stress symptoms (PTSS) following a natural disaster. The current study aimed to investigate the relationship between parents' perceptions of their parenting in the aftermath of a natural disaster, and child PTSS.

METHODS:
A cross-sectional design was used to explore the associations among child PTSS, parents' perceptions of altered (more anxious) parenting, and parental disaster-related distress (altered cognitions and behaviors) in 874 elementary school children (ages 8-12 years) and their parents following a severe storm of cyclonic proportions. With parental consent, school-based screening was conducted in impacted communities 3 months after the storm. Children completed a screening questionnaire consisting of the Child Trauma Screening Questionnaire (CTSQ; used for identifying children at risk for posttraumatic stress disorder [PTSD]), as well as a range of questions assessing disaster exposure and threat perception. Parents completed questions relating to their perceptions of changes in their parenting since the storm, as well as two items relating to their own disaster-related distress.

RESULTS:
Independent of other significant associations with child PTSS (such as age, gender, and disaster exposure), a high level of parent-perceived altered parenting appeared to put children at increased risk for PTSS 3 months after the disaster. However, when the sample was stratified for the presence or absence of altered parent cognitions and behaviors following the storm, altered parenting was found to have a unique relationship with child PTSS only when parents reported altered disaster-related cognitions and behaviors.

CONCLUSIONS:
When parents report disaster-related cognitions and behaviors, their perception of altered parenting practices (becoming more protective, less granting of autonomy, and communicating a sense of current danger) is associated with child PTSS. Although it is not possible to draw conclusions about the direction of these relationships, this study identifies parenting practices that may constitute important targets for intervention.

This short overview 'Young Carers in Sweden' is a summary of two reports on young carers in Sweden. The government initiated a wide spreading development work, in which the National Board of Health and Welfare, the National Institute of Public Health, Swedish municipalities and health care regions collaborated to strengthen support to children and young people in families with substance abuse, serious illness or mental ill-health, violence or death of a parent. These two reports provide the foundation for this work. The references to the original reports are found at the end of the overview.

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.

This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).

This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).

This study examined potential discriminators of groups of older adults showing different patterns of stability or change in loneliness over 5 years: those who became lonely, overcame loneliness, were persistently lonely, and were persistently not lonely. Discriminant function analysis results showed that the persistently lonely, compared with the persistently not lonely, were more often living alone, widowed, and experiencing poorer health and perceived control. Moreover, changes in living arrangements and perceived control predicted loneliness change. In conclusion, perceiving that one is able to meet social needs is a predictor of loneliness and loneliness change and appears to be more important than people's friendships. Because the predictors were better able to predict entry into loneliness, results point to the promise of prevention approaches to loneliness interventions.

OBJECTIVES: This qualitative study aimed to illuminate former family caregivers'
experiences of aspects that facilitate and hinder the process of relinquishing
the care of a person with dementia to a nursing home.
METHOD: Ten narrative interviews with former family caregivers were performed and
subjected to qualitative content analysis.
RESULTS: An overall theme showed that family caregivers were remaining connected
to the person with dementia despite separation. They experienced being 'caught by
surprise' when the placement occurred. Negative expectations of dementia care
made the separation more difficult. Lacking adequate information increased
feelings of insecurity. Despite these hurdles, family caregivers found meaning in
the new situation as they felt that they could remain connected to their loved
one. Being recognized as partners in care of the person with dementia after
placement was a facilitating aspect. Family caregivers regarded a
well-functioning interaction with staff and a supportive social network as
reassuring since they facilitated staying in touch.
CONCLUSION: Knowledge of the relinquishing process and adequate information about
dementia and its progression may help family caregivers better prepare for and
adapt to the situation. Family caregivers need to be recognized as partners in
care and a welcoming nursing home environment is of utmost importance.

Många äldre lider av psykisk ohälsa. Vid 75 års ålder beräknas 15–25 procent
lida av psykisk ohälsa, men alla dessa har inte en psykiatrisk diagnos. I
dag återfinns äldre personer med psykiatrisk problematik framför allt inom
primärvården och äldreomsorgen, utan tillgång till specialist-psykiatrins
kompetens.
En förutsättning för god vård och omsorg för äldre personer med psykisk
ohälsa är att personal inom socialtjänsten och den kommunala hälso- och
sjukvården har kompetens för att upptäcka tecken på psykisk ohälsa hos
dessa personer och att ge dem rätt stöd i det dagliga livet. Många äldre personer
träffar bara läkare inom primärvården någon enstaka gång per år och
då under en ganska kort tid per tillfälle. Distriktssköterskor och personal
inom hemtjänst och särskilt boende kan däremot dagligen ha kontakt med
multisjuka äldre, och har därmed stora möjligheter att upptäcka om en äldre
person har eller riskerar att få psykisk ohälsa.
Andra viktiga förutsättningar för en god vård och omsorg för äldre personer
med psykisk ohälsa är ett systematiskt arbete för en evidensbaserad
praktik, inklusive uppföljning och utvärdering. En värdegrund byggd på
respekt för den enskilde brukaren och dennes upplevelser hör också till förutsättningarna
för en god vård och omsorg, liksom samverkan mellan verksamheter
och professioner utifrån en helhetssyn på den enskilda äldre personens
situation och behov.
I denna vägledning ges exempel på tecken på psykisk ohälsa som kan
signalera problem av varierande allvarlighetsgrad.
Många äldre personer behöver hjälp och stöd för att kompensera konsekvenserna
av en psykisk ohälsa, och det behovet utgör ofta grunden för de insatser
som en kommun erbjuder målgruppen. De vanligaste insatserna, utöver hemtjänst
och särskilt boende, är ett boende i bostad med särskild service enligt
LSS eller boendestöd i det ordinära boendet. Det är viktigt att dessa insatser
utformas med insikt om att många som tar del av dem har psykisk ohälsa, så att
deras behov och möjligheter inte förbises.
För att möta äldre personer som har eller riskerar psykisk ohälsa är det
viktigt att inte bara ge insatser utan även ge möjlighet att stärka den egna
förmågan att motverka psykisk ohälsa. Ett väl utvecklat relationsarbete i
förhållande till äldre personer med psykisk ohälsa och deras anhöriga är
också en viktig del av en god vård och omsorg.

Abstract
PURPOSE:
To evaluate a person-centered intervention, directed to siblings with a brother or sister newly diagnosed with cancer that combines education, learning and reflection about cancer.
METHOD:
Qualitative methods with pre- and post-intervention semi-structured interviews were conducted. Fourteen siblings aged 9-22 years participated. A qualitative content analysis was carried out.
RESULTS:
The result comprises of five themes: 'grasping for knowledge about cancer, 'thinking for hours and having nightmares', 'experiencing physical pain', 'being emotional in several ways', 'waiting for a normal, good life despite the uncertain future". Pre-intervention; a low level of knowledge of cancer treatments and its side effects was revealed; siblings slept poorly, lay awake thinking and had nightmares about cancer; they felt pain in different parts of their body; they felt emotional and angry and were anxious as cancer is life-threatening; in the future the sick child will finished treatment and recovered. Post-intervention; siblings described having specific knowledge, felt more informed, and that it was easier to understand the sick child's situation; they slept better, but still had a lot on their minds regarding the sick child; most siblings said they no longer experienced pain, felt better and were happier but could still get sad; in the future the sick child would be healthy, not exactly as before, but almost.
CONCLUSION:
Person-centered intervention helps siblings to be more knowledgeable about the sick child's cancer, leading to a more realistic view about treatments and consequences. Further studies of person-centered interventions for siblings are important.
Copyright © 2014 Elsevier Ltd. All rights reserved.

"Sjukt viktig" är en pysselbok för barn som av någon anledning kommer i kontakt med sjukvården, det kan vara för egen del men också när någon i dess närhet är sjuk. Boken är tänkt att underlätta för barnet att förstå vad det är som ska hända, händer eller som har hänt, allt får akut vård till planerade sjukhusbesök. Boken är uppbyggd så att barnet själv får vara aktiv och genom pyssel "bygga upp" den situatuion som råder. Boken innehåller även en handledningsdel för den som ska hjälpa barnet att förstå.

Kommunernas tillämpning av bestämmelsen

Den 1 juli 2009 infördes en bestämmelse i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, om att socialtjänsten ska erbjuda stöd till personer som vårdar eller stödjer närstående.

Socialstyrelsens uppföljning visar att socialtjänstverksamheterna i kommunerna tillämpar bestämmelsen i mycket varierande grad. Längst har man kommit inom äldreomsorgen, vilket förklaras av utvecklingen av anhörigstöd i huvudsak skedde inom äldreomsorgen, innan bestämmelsen tillkom. Inom funktionshindersverksamheten och individ- och familjeomsorgen har man kommit igång, men mycket arbete återstår för att omsätta bestämmelsen utifrån de specifika förutsättningar som finns i dessa verksamheter.

Kommunerna har dock överlag blivit bättre på att sätta upp mål, avsätta resurser och organisera arbetet med att stödja anhöriga. Likaså har de ökat sitt utbud av service som stöd till anhöriga. Det betyder sammantaget att kommunerna erbjuder stöd till anhöriga i högre grad än tidigare.

Vad har bestämmelsen inneburit för de anhöriga?

Det är svårt att följa upp och beskriva bestämmelsens effekter för enskilda anhöriga eftersom det saknas underlag för att avgöra om fler anhöriga erbjudits och tagit emot stöd eller inte. Det beror på att uppgifterna om biståndsbeviljade insatser i socialtjänststatistiken inte innefattar uppgifter om bistånd till anhöriga.

Vad anser organisationerna om bestämmelsen?

Överlag är anhörig-, patient-, funktionshinders-, frivillig- och pensionärsorganisationerna kritiska till bristen på stöd, de stora skillnaderna i kvalitet och de stora variationerna mellan kommunerna. Socialtjänsten har också svårt att erbjuda ett individuellt utformat stöd. Vidare kräver de att den personal som arbetar med att stödja anhöriga ska ha kunskaper om de sjukdomar eller funktionsnedsättningar som de närstående har.

Organisationerna framhåller att det stöd som deras medlemmar behöver inte kan tillgodoses enbart inom socialtjänsten, utan det krävs stöd från sjukvården, skolan, arbetsgivaren och myndigheter, t.ex. försäkringskassan. Organisationerna poängterar också problemen med att samordna insatser för den närstående, och att det oftast är de anhöriga som tvingas ta det ansvaret.

Socialtjänstens samarbete med hälso- och sjukvården

Socialtjänsten har ett mycket begränsat samarbete med sjukvården när det gäller stödet till anhöriga, och socialtjänstens företrädare pekar på att det saknas en motsvarande lagstiftning om stöd till anhöriga i sjukvården. Det är också svårt att organisera ett kommunvis samarbete med sjukhus- och specialistvården som ofta betjänar många kommuner samtidigt. Även samarbetet med primärvården fungerar dåligt. Det grundläggande problemet är dock att det saknas en etablerad struktur för samarbetet mellan landstinget och socialtjänsten på området.

Har bestämmelsen fått några andra konsekvenser?

Sedan bestämmelsen infördes bedrivs allt mer av vården och omsorgen i hemmet, som en följd av att det finns färre sjukhusplatser och platser i särskilt boende. Detta får stora konsekvenser för de anhöriga.

I och med bestämmelsen har det blivit tydligt att lagen gäller för hela socialtjänsten och alla dess målgrupper och verksamheter. Bestämmelsen berör alla som vårdar eller stödjer någon närstående, oberoende av den närståendes diagnos, funktionsnedsättning, ålder, kön, relation, boendeförhållanden osv.

Det har också vuxit fram en insikt om att alla påverkas om det finns en hjälpbehövande person i familjen: oavsett om det är en make, ett barn eller en vuxen, en förälder eller ett syskon. Det gäller också oavsett i vilken utsträckning den anhöriga ger vård och omsorg till den sjuke.

En annan erfarenhet är att behovet av att uppmärksamma de anhörigas situation och behov av stöd inte enbart är en fråga för socialtjänsten utan för hela samhället: sjukvården, skolan, arbetslivet, myndigheterna och så vidare. Det pekar på behovet av ett förändrat synsätt, från ett individcentrerat till ett familjeorienterat synsätt i vården och omsorgen.

Socialstyrelsens slutsatser

Socialstyrelsen konstaterar att det återstår en del arbete för att bestämmelsen ska tillämpas mer i socialtjänsten och för att få ett anhöriginkluderande arbetssätt i all vård- och omsorgsverksamhet.

Kommunerna behöver bli bättre på att informera om vilket stöd de kan erbjuda, och hur anhöriga kan gå tillväga för att ansöka om det eller på annat sätt få stöd.
Kommunerna behöver utveckla dialogen med anhörig-, patient-, funk
tionshinders-, frivillig- och pensionärsorganisationerna för att ta vara på de kunskaper och erfarenheter som organisationerna har när det gäller stöd till anhöriga som vårdar närstående.
Huvudmännen behöver utveckla former och rutiner för samarbete kring stödet till anhöriga. Ett sätt kan vara länsövergripande överenskommelser om samverkan mellan sjukvården och socialtjänsten.
Socialtjänstens olika verksamheter, särskilt funktionshindersverksamheten och individ- och familjeomsorgen, behöver fortsatt stöd för att utveckla sin tillämpning av bestämmelsen. Ett fortsatt stöd bör också ta sikte på att utveckla möjligheterna att följa upp utvecklingen av stödet till anhöriga och att stimulera utvecklingen av kunskaper om effekter av stöd till anhöriga.

Riksrevisionen har granskat om staten har gett förutsättningar för ett stöd till anhöriga
omsorgsgivare som motsvarar behoven.
Granskningens bakgrund
Någon gång i livet kommer de flesta av oss att ge omsorg eller hjälp till någon i vår
närhet som drabbas av sjukdom, en funktionsnedsättning eller som får behov av hjälp
på grund av hög ålder. Vi blir då anhöriga omsorgsgivare. Det kan vara så många som
1,3 miljoner anhöriga i Sverige som ger omsorg till en närstående. De flesta anhöriga
ger omsorg av fri vilja och har en god hälsa. Undersökningar visar dock att anhörigas
hälsa, ekonomi, arbetssituation och möjligheter till fritid kan påverkas negativt av
omsorgsgivandet. Ofta bor dessa anhöriga tillsammans med den de ger omsorg till, en
make/maka/partner, ett barn eller ett syskon, och deras omsorg är omfattande.
Att som anhörig ge vård och omsorg ska vara ett frivilligt åtagande och ett komplement
till det offentligas insatser. I praktiken är dock det offentligas insatser ett komplement till
de anhörigas omsorgsgivande enligt regeringen. Ett gott stöd till anhöriga är viktigt för
att undvika negativa konsekvenser av omsorgsgivandet för individer och för samhället.
Syftet har varit att granska om staten har gett förutsättningar för ett stöd till anhöriga
omsorgsgivare som motsvarar behoven. Staten har främst valt att tillgodose anhörigas
behov av stöd genom att ändra socialtjänstlagen, 1998 och 2009, i syfte att förtydliga
kommunernas ansvar för stöd till anhöriga. Efter lagändringen 2009 ska kommunerna
erbjuda stöd till anhöriga. I regeringens propositioner inför lagändringarna har det
framgått att stödet ska kännetecknas av individualisering, flexibilitet och kvalitet.
Granskningen bygger främst på intervjuer med anhöriga, anhörig- och
patientorganisationer, forskare och företrädare för myndigheter och Nationellt
kompetenscentrum anhöriga (Nka). Intervjuerna har kompletterats med
forskningsresultat och kvantitativa studier.

Granskningens resultat
Riksrevisionens övergripande slutsats är att staten inte har gett goda förutsättningar för
ett stöd till anhöriga omsorgsgivare som motsvarar behoven. Granskningen visar att
anhörigas behov av stöd ofta handlar om att den närstående får en god vård och omsorg
men också om ett individanpassat och flexibelt stöd till dem själva.
Kommunernas anhörigstöd behöver utvecklas
En av de möjligheter till individualiserat stöd som regeringen betonade år 2009 var
att anhöriga skulle ansöka om bistånd för egen del. Under granskningen har det
framkommit att det är ovanligt och att omfattningen är svår att följa upp på grund
av bristande dokumentation. Riksrevisionens granskning tyder också på att brister i
kvalitet och flexibilitet i anhörigstöd leder till att anhöriga väljer att inte utnyttja det stöd
som erbjuds.
Det är stora skillnader i vilket stöd som erbjuds anhöriga och hur anhörigstödet styrs
inom och mellan kommuner enligt Socialstyrelsens kartläggningar. Stödet är i de
flesta kommuner mest utbyggt inom äldreomsorgen med utgångspunkt i situationer
där äldre makar ger omsorg till varandra. Det innebär enligt Riksrevisionen att äldre
makar i större utsträckning erbjuds stöd som motsvarar behoven än exempelvis
förvärvsarbetande anhöriga, anhöriga till funktionshindrade eller personer med
psykisk ohälsa. Sedan år 2009 har kommunerna börjat utforma stöd utifrån andra
anhöriggruppers behov i högre utsträckning än tidigare.
Kommunerna har även organiserat, styrt och finansierat anhörigstödet olika. I de
flesta kommunerna har dock anhörigstödet främst bedrivits i projektform, vid sidan
av ordinarie linjeorganisation. Det är också ovanligt att det finns styrdokument som
innehåller rutiner med ett anhörigperspektiv.
Riksrevisionen anser att kommunernas anhörigstöd behöver utvecklas för att uppfylla
intentionerna om ett individualiserat, flexibelt och kvalitativt stöd. Enligt Riksrevisionen
har utbudet av stöd hittills inte varit tillräckligt anpassat till anhörigas skiftande behov
och skillnaderna indikerar att kommunerna i olika utsträckning har valt att prioritera
stöd till anhöriga.
Staten bör ge bättre förutsättningar för det kommunala anhörigstödet
Kommunerna har fått ett stort utrymme att själva avgöra vilket anhörigstöd som de ska
erbjuda eftersom kommunernas ansvar har reglerats med en ramlagsbestämmelse i
socialtjänstlagen. I förarbetena preciserade regeringen att stödet bör kännetecknas av
individualisering, flexibilitet och kvalitet. Eftersom kommunerna har valt att främst
erbjuda anhörigstöd som kommunal service finns det begränsade möjligheter för
domstolarna att tydliggöra vilket stöd kommunerna ska erbjuda genom vägledande
rättsfall.

riksrevisionen granskar: medborgarna och förvaltningen
Regeringen har gett Socialstyrelsen i uppdrag att vägleda kommunerna i
implementeringen av bestämmelsen och inrättat ett nationellt kompetenscentrum
för att förbättra kunskapsläget. Trots dessa åtgärder nås ännu inte intentionerna
med det kommunala anhörigstödet och det skiljer sig åt vilket stöd anhöriga erbjuds
inom och mellan kommuner. Riksrevisionen menar därför att ytterligare vägledning
till kommunerna troligtvis inte är tillräckligt för att åstadkomma anhörigstöd som
motsvarar intentionerna.
Riksrevisionen anser att staten inte har gett tillräckligt goda förutsättningar för ett
kommunalt anhörigstöd som motsvarar intentionerna. Riksrevisionen rekommenderar
därför regeringen att överväga om 5 kap. 10 § socialtjänstlagen behöver förtydligas.
Statens styrmedel kan användas bättre
Sedan år 1999 har staten totalt satsat cirka 2 miljarder kronor på att utveckla
anhörigstöd i kommunerna. Riksrevisionens granskning visar att det delvis är oklart
vilka resultat som uppnåtts med de statliga satsningarna på kommunalt anhörigstöd.
Ett hinder för kunskap om satsningarna är att det saknas nationell statistik över vilket
stöd kommunerna erbjuder anhöriga och som anhöriga tar del av, vilket förklaras av
brister i dokumentation av anhörigstödet.
Varken Socialstyrelsen eller Inspektionen för vård och omsorg har hittills
genomfört någon riktad tillsyn av kommunernas skyldighet att erbjuda anhöriga
stöd. Riksrevisionen bedömer att tillsyn med nuvarande förutsättningar inte är ett
ändamålsenligt styrmedel för att komma tillrätta med problemen i kommunernas
anhörigstöd.
Riksrevisionen rekommenderar att om regeringen vill möjliggöra uppföljning, ökad
kunskap samt tillsyn av anhörigstödet i kommunerna bör regeringen ta ställning
till hur anhörigstödet som ges som service och bistånd ska dokumenteras av
kommunerna.
Det behövs mer kunskap om anhörigomsorgen
Idag finns det inga jämförbara studier om anhörigomsorgens utveckling över tid. De
undersökningar som finns har genomförts av olika aktörer och med olika frågor och
urval. Därmed är resultaten svåra att jämföra. Det saknas också kartläggningar av
omfattningen på minderåriga barns omsorgsgivande till närstående. Sammantaget
medför detta att det även saknas underlag för att bedöma de samhällsekonomiska
konsekvenserna av och kostnaderna för anhörigomsorgen på individ- och samhällsnivå.

stödet till anhöriga omsorgsgivare
Riksrevisionen rekommenderar att regeringen ger en myndighet i uppdrag att följa
anhörigomsorgens omfattning och konsekvenserna för individer och samhället över
tid. Ett steg bör vara att ta fram en samhällsekonomisk analys av anhörigomsorgens
konsekvenser för individer och samhälle. Jämställdhetsaspekterna bör särskilt
uppmärksammas i en sådan analys.
Det bör vara lättare att förena anhörigomsorg med arbete
Anhöriga som arbetar och som ger omsorg är i stor utsträckning beroende av sina
arbetsgivares välvilja för att kunna stanna kvar på arbetsmarknaden. Detta då de
förmåner som finns – närståendepenning och rätten till ledighet vid närståendevård
och av trängande familjeskäl – bara täcker delar av anhörigas behov och används i liten
utsträckning. Anhöriga som arbetar är i många fall beroende av att själva kunna styra
sina arbetstider och att ta ledigt med kort varsel. Flera anhöriga tar också ut semester
och flextid för att kunna ge omsorg till sina närstående.
Riksrevisionen rekommenderar att regeringen överväger om delar av
socialförsäkringssystemet och arbetsmarknadslagstiftningen bör anpassas till anhörigas
behov för att underlätta för anhöriga att förena anhörigomsorg med arbete.
Det bästa anhörigstödet är en god vård och omsorg
Riksrevisionen anser att kvalitetshöjande åtgärder inom vård och omsorg är det som
i störst utsträckning skulle förbättra för anhöriga. I intervjuer har det framkommit
att det bästa stödet till anhöriga är en god vård och omsorg om den närstående. Det
handlar om omsorgsinsatser som exempelvis särskilda boenden och hemtjänst,
vårdinsatser som behandling och vårdplatser på sjukhus men också personal med rätt
utbildning och kompetens. Riksrevisionen har inte granskat vården och omsorgen om
den närstående i sig men har valt att redovisa hur viktig vården och omsorgen om den
närstående är för anhörigas situation och behov av stöd.
Det ska vara frivilligt att ge anhörigomsorg i Sverige. Riksrevisionen anser att en
förutsättning för frivillighet är att det finns ett alternativ till anhörigas insatser i form av
en god offentlig vård och omsorg. Riksrevisonens bedömning utifrån intervjuer under
granskningen är att många anhöriga tar på sig ett större ansvar än de egentligen vill på
grund av brister i vården och omsorgen.
Många anhöriga upplever att en av de tyngsta bördorna de har att bära är den
samordnande och koordinerande roll de ofta måste ta på sig. Om anhöriga inte tog på
sig koordinatorrollen skulle mycket falla mellan stolarna. Riksrevisionen menar att
detta är ett svårlöst problem som är kopplat till uppdraget till och organiseringen av
vården och omsorgen.
riksrevisionen granskar: medborgarna och förvaltningen

I Riksrevisionens intervjuer framkommer att anhörigas behov av att bli sedda och
få information och kunskap sällan tillgodoses i kontakter med vård och omsorg.
Vidare framförs i intervjuerna att vårdplaneringar är en situation där många anhöriga
känner sig osynliga. Riksrevisionen rekommenderar att regeringen bör se till att det tas
fram utbildningar för att sprida kunskap till anställda i kommuner och landsting om
anhörigas betydelse för vård och omsorg samt hur vården och omsorgen kan stödja
anhöriga genom bland annat information och bemötande.
De anhöriga som Riksrevisionen har intervjuat upplever att de måste kämpa för att få
de insatser som den närstående behöver från kommunerna och att de befinner sig i ett
kunskapsunderläge i förhållande till kommunerna om vilka insatser den närstående
har rätt till. Anhöriga beskriver också att det är svårt, tidskrävande och påfrestande
att överklaga beslut. Riksrevisionen rekommenderar regeringen att ge Socialstyrelsen i
uppdrag att informera om rätten till stöd och insatser i SoL och LSS och hur praxis ser
ut om regeringen vill underlätta för anhöriga.
Landstingen saknar ett strukturerat arbete med att ge stöd till vuxna anhöriga enligt
Nationellt kompetenscentrum anhöriga, Anhörigas Riksförbund och Socialstyrelsen.
I hälso- och sjukvårdslagen finns endast ett generellt folkhälsoförebyggande uppdrag
och ett uppdrag om att ge stöd till minderåriga barn i vissa situationer. Riksrevisionen
rekommenderar regeringen att överväga om landstingens ansvar för stöd till anhöriga
behöver förtydligas i hälso- och sjukvårdslagen.

The Moving Parents and Children Together (M-PACT) programme is one of the growing number of interventions tailored to meet the multiple and complex needs of children and families affected by parental substance misuse. This paper pulls together the qualitative findings from 13 evaluated M-PACT programmes in England. Sixty-four families attended an M-PACT programme, including 82 children and 75 adults. Qualitative data were collected from 37 children, 36 adults and over 30 group facilitators. Six themes are discussed: engaging with M-PACT, shared experiences, understanding addiction, changes in communication, healthier and united families, and ending M-PACT. The majority of families benefitted in a range of ways from the programme: meeting others who were experiencing similar problems, greater understanding about addiction and its impact on children and families improving communication within the family. In many families there was more openness and honesty, stronger relationships and more time as families, and a reduction in arguments and conflict. The key findings are discussed in terms of the potential for interventions of this kind to reduce family-related harm from parental substance misuse.

Background
Aboriginal Australians experience a disproportionately high burden of alcohol-related harm compared to the general Australian population. Alcohol treatment approaches that simultaneously target individuals and families offer considerable potential to reduce these harms if they can be successfully tailored for routine delivery to Aboriginal Australians. The Community Reinforcement Approach (CRA) and Community Reinforcement and Family Training (CRAFT) are two related interventions that are consistent with Aboriginal Australians' notions of health and wellbeing. This paper aims to describe the process of tailoring CRA and CRAFT for delivery to Aboriginal Australians, explore the perceptions of health care providers participating in the tailoring process, and their experiences of participating in CRA and CRAFT counsellor certification.

Methods
Data sources included notes recorded from eight working group meetings with 22 health care providers of a drug and alcohol treatment agency and Aboriginal Community Controlled Health Service (November 2009-February 2013), and transcripts of semi-structured interviews with seven health care providers participating in CRA and CRAFT counsellor certification (May 2012). Qualitative content analysis was used to categorise working group meeting notes and interview transcripts were into key themes.

Results
Modifying technical language, reducing the number of treatment sessions, and including an option for treatment of clients in groups, were key recommendations by health care providers for improving the feasibility and applicability of delivering CRA and CRAFT to Aboriginal Australians. Health care providers perceived counsellor certification to be beneficial for developing their skills and confidence in delivering CRA and CRAFT, but identified time constraints and competing tasks as key challenges.

Conclusions
The tailoring process resulted in Aboriginal Australian-specific CRA and CRAFT resources. The process also resulted in the training and certification of health care providers in CRA and CRAFT and the establishment of a local training and certification program.

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

We conducted a pragmatic, mixed methods study comparing rural family caregivers
receiving e-health caregiver support (n = 35) with a control group (n = 21)
receiving conventional, non-e-health, caregiver support. After 18 months, the
benefits of support were evaluated using the Care Effectiveness Scale (40-items
exploring the domains of preparedness, enrichment and predictability). In all
domains the e-health group scored significantly higher than the control group.
The adjusted difference for overall benefits was 3.0 (P = 0.02) on the scale
0-10. In addition, semi structured interviews were conducted with a sub-sample of
the caregivers. For the e-health group flexibility, availability and being able
to individualise the support were essential factors. All caregivers in the
control group found conventional support to be beneficial, but also stressed
unmet needs related to the conventional support being standardised and
non-flexible. The study suggests that providers of caregiver support should offer
e-health support as an alternative to conventional caregiver support, as it can
be more beneficial to family caregivers.

The study by Tan et al. is of interest because it shows that children′s development is not necessarily delayed because of disability, specifically cerebral palsy (CP).[1] CP is one of the most common childhood-onset disabilities and a condition frequently researched. PubMed, for example, reports 13 885 hits for CP compared with conditions such as developmental delay (6079) and myelomeningocele (602). As CP causes activity limitations, which can lead to restrictions in socially or culturally influenced areas of life, the study by Tan et al. provides insights into the social strengths that children with CP have. The results, indicating that many of the children diagnosed with CP can develop to the same level of social participation as children without disability (even though it may take more time), should have a positive impact on the expectations of their caregivers and families. Hopefully adults might increase their efforts to teach children with disabilities to interact with peers instead of mostly communicating with adults.[2]

The construct of participation has various interpretations and the rating of participation is controversial. This study aimed to address 'performance of social participation', from the perspective of socialization including interrelationships, play and leisure time; coping rated with the Vineland Adaptive Behavior Scale; and social function rated with Pediatric Evaluation of Disability Inventory. In the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY),[3] participation is defined as 'involvement in a life situation'. It includes two aspects: to attend activities, i.e. be there, and to experience engagement while being there.[4] The ratings reported in this study reflect the abilities needed for social interactions, not necessarily how a child carries out the interactions in various life situations. The ratings are in accordance with how capacity is rated using the ICF-CY qualifiers, but does not reflect the children′s attendance or engagement. Therefore, the children′s performance of social participation is not fully established.

The Tan et al. study has several implications for clinical practice. For example, doing and being with others, which are elements of social participation, facilitate learning and development and should be considered by the adults who are around children with disabilities.[5, 6] Child participation, as a determinant of well-being and life satisfaction, may also decrease mental health problems.[7] In addition to the abilities needed for social interactions, social participation includes an experience of belonging and inter-subjective interaction that leads into acts of acknowledgment.[8] Because adults provide 'scaffolds' for the experiences of children with disabilities, parents and teachers have the responsibility to encourage the children to start interacting with peers and to introduce them to potential friends. The results reported in this study in terms of the development of children's abilities for interactions, should influence the adults' attitudes to the children's social roles in a positive way.

When receiving support from adults, it is likely that the children's understanding of and adaption to social demands improve. For children with CP, participation restrictions are most often associated with their physical impairments related to environmental barriers, such as reduced access to venues and events.[9, 10] However, negative social attitudes to disability may also constitute barriers to participation. As children with disabilities attend community activities less frequently than typically developing children,[11] adults must make efforts to introduce the children to such activities in addition to introducing them to those peers sharing the activity.

For persons with severe CP or persons with additional intellectual disability, the result of the study shows there is no specific age where development ceases. This should be seen as a promising finding that should encourage parents and professionals to continue to stimulate social development across ages.

In this study, developmental trajectories were stratified by level of gross motor functioning. For future research, the authors note the need for enhanced insight into the additional determinants of social participation development, such as CP characteristics and contextual factors. Since manual abilities are important for diverse activities, communication included, should the developmental trajectories also be stratified by the children's level of fine motor functioning?

OBJECTIVES: The aim was to describe the existential life situations of spouses
who care for persons with dementia, before and after relocation to nursing homes.
METHOD: This was a qualitative study among 11 spouses of persons with dementia,
recruited via purposeful sampling. Data were collected through interviews and
analysed with interpretive content analysis.
RESULTS: Before the relocation to nursing homes, the spouses' existential life
situations were characterized by feelings of shame and guilt, being isolated in
the home. Spouses were also exposed to psychological threats, physical violence,
and had feelings of placing one's own needs last. After the relocation, spouses
described feelings of guilt and freedom, living with grief and thoughts of death,
feelings of loneliness in the spousal relationship, and striving for acceptance
despite a lack of completion.
CONCLUSION: The existential life situation of spouses of persons with dementia is
about being in limit situations which changes when the ill person relocates to a
nursing home. This is important knowledge for health care staff to bear in mind
at nursing homes when encountering spouses.

BACKGROUND:
Previous findings suggest that the loss of a family member is associated with health and mortality. The purpose of this study was to investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association.
OBJECTIVE:
To investigate the association between bereavement experiences and BMI, and whether there are socio-demographic differences in this association.
METHODS:
We used cross-sectional data with retrospective questions from the Swedish Level of Living Survey (LNU) of 2000, including 5,142 individuals. The bereavement experiences examined in the study include the loss of a sibling, a parent or a spouse, and time since the death of a parent. BMI (kg/m2) was calculated using self-reported measurements of weight and height. The association between bereavement and BMI was evaluated through linear regressions.
RESULTS:
After controlling for possible confounders, most of the models detected an association between bereavement and BMI. The fully-adjusted model showed that loss of parents was associated with a 0.45 increase in BMI (SE = 0.20). The effect also seemed to be dependent on time since the loss and social class position.
CONCLUSIONS:
The present study is the first to examine associations between different types of familial losses and BMI. We find an association between the death of a family member and BMI, but it appears to be related to time since the death, type of bereavement experience and social class.

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

This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.

Medium- and long-term effects of types of placement of the offspring of lower class families have been studied. The progeny of 28 mothers was reconstituted. The subjects were divided into three groups: 35 children abandoned and adopted early in privileged environments (A), 46 'biological mother-reared' children remaining in their disadvantaged social environments (B) and 21 children raised in institutions or foster homes (C). Analyses focused on IQ, scholastic performance and behaviour. Results show that the social environment has important effects: the differences between the three groups are very significant. For A and B groups tested in the schools, comparisons were made with the classmates. For the C group the effects of long-term emotional deprivation are superimposed on the effects of the social environment.

Encyclopedia of Mental Health, Second Edition, tackles the subject of mental health, arguably one of the biggest issues facing modern society. The book presents a comprehensive overview of the many genetic, neurological, social, and psychological factors that affect mental health, also describing the impact of mental health on the individual and society, and illustrating the factors that aid positive mental health.
The book contains 245 peer-reviewed articles written by more than 250 expert authors and provides essential material on assessment, theories of personality, specific disorders, therapies, forensic issues, ethics, and cross-cultural and sociological aspects. Both professionals and libraries will find this timely work indispensable.

VARFÖR DENNA BOK?Den här boken påbörjades för tjugofyra år sedan. Då kom vår tredje dotter Lisa till världen och hela vår familjesituation förändrades i grunden. Lisa föddes med funktionsnedsättningen Downs syndrom, eller mongolism, som många felaktigt kallar det. Under Lisas första månader skrev jag ner mina tankar och reaktioner i form av anteckningar och dikter. Mycket text kring förtvivlan, sorg, skam, ilska, hopp, kärlek och det som jag, och säkert andra mycket tidigare än jag själv, uppfattade som självömkan.Efter några månader övergav jag mitt skrivande, troligen för att jag inte hade samma uttrycksbehov. Men säkert också för att mitt samvete inte ville konfronteras med mina formuleringar. Behovet av att skriva dikter avtog. När jag sjutton år senare hittade en gammal utskrift av mina anteckningar föddes idén om att fullfölja berättelsen fram till dags dato. En fortsättning på en historia som varit arbetsam, men som stärkt vår familj och gett oss särskilda erfarenheter och livskvaliteter. En viktig anledning till att nu avsluta berättelsen var att söka en förklaring till varför jag reagerade som jag gjorde när Lisa föddes. Var mina reaktioner ovanliga? Kunde andra uppleva situationen på liknande sätt? Samtidigt sporrades jag av en slags nyttoinriktad ambition att få andra att förstå min upplevelse: I ett av mina lyckligaste ögonblick ställs jag inför faktumet, att vårt nyfödda barn har en funktionsnedsättning. Så den här boken blir främst en personlig vittnesbörd. Men den som tagit del av den vill säkert gå vidare, vidga sin kunskap och få veta mera. Boken avslutas därför med en referenslista över vetenskaplig litteratur och information kring mitt ämne. Jag hoppas att detta kan inspirera till vidare läsning och diskussion. Vid varje kapitelslut finns korta sammanställningar av fakta eller refererat av det viktigaste jag läst. Forskning vill ju annars alltid bli för lång, det är därför den blir vad den ska vara, i bästa fall: Ögonöppnande, och utan slut. För den som vill koppla bokens innehåll till utbildning finns ett textmaterial: "Det tårdränkta barnet. Forskningsgenomgång, diskussionsfrågor och förslag till arbets- och fördjupningsuppgifter", som lätt kan laddas hem på webbadressen karlsudd.se. Här kan du även se Lisas bilder i färg.Min berättelse här bygger alltså på mina personliga erfarenheter. Jag vill betona det, allt jag skriver får givetvis stå för mig. Jag har försökt anstränga mig för att göra rättvisa åt övriga familjemedlemmars minnesbilder. Under fem somrar har jag försökt slutföra texten, men inte lyckats. Eftersom Lisas utveckling gått bakåt de senaste åren har det varit svårt att skriva om den tid som varit. Om du läser den här texten omgiven av ett bokomslag, har jag trots detta lyckats i mina föresatser.Boken tillägnar jag Lisa - vår underbara dotter och syster som har gett oss så mycket glädje, kärlek och insikter i livet. Som vi alltid säger till henne vid läggdags: VI ÄR STOLTA ÖVER DIG, VI ÄR RÄDDA OM DIG OCH VI ÄLSKAR DIG.Pappa Peter, med uppmuntran från mamma Marie och storasystrarna Anna-Mi och Hanna.Karlsnäs, 2014

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

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.

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.

Barn som växer upp i en familj där en vuxen har missbruksproblem utsätts för svåra
påfrestningar. Hur kan stödet till barnen stärkas? Regionförbundet Uppsala län och
Uppsala universitet har i ett samarbetsprojekt sökt ta fram fördjupad kunskap om
hur barn och ungdomar i den situationen ser på sitt behov av stöd och att med detta
och tidigare forskning som grund utveckla stödet till barnen och deras föräldrar.
Barn, ungdomar och föräldrar intervjuades och ett utvecklingsarbete genomfördes
tillsammans med fem kommuner. Projektet finansierades av Folkhälsomyndigheten
under 2012–2015. I den här rapporten ger vi en kort sammanfattning av huvuddragen
i det som projektet kom fram till. För ytterligare information se kommande
publikationer av Alexanderson och Näsman.

Barn i missbruksmiljöer (BIM) är ett forsknings- och utvecklingsprojekt som genomförts i samverkan mellan Regionförbundet Uppsala län och Uppsala universitet under 2012–2015.

I projektet har barn, ungdomar och föräldrar intervjuats och socialtjänsten i länets kommuner involverats i ett utvecklingsarbete för att utveckla stödinsatser till barn och vuxna i familjer där en förälder har problem med missbruk. Resultat från projektet redovisas i denna skrift.

The aim of this pilot study was to investigate the feasibility and effectiveness of a new psychoeducative intervention program (PEGASUS) for adults with ADHD and their significant others in a psychiatric outpatient context. At three outpatient psychiatric clinics, adults with ADHD and their significant others took part in PEGASUS, a psychoeducational program based on theories from cognitive behavioral therapy, neuropsychology, and cross-disciplinary evidence regarding ADHD. In total, 108 adults were allocated to treatment (51 with ADHD and their 57 significant others). Feasibility was evaluated regarding suitability of the intervention at a psychiatric outpatient clinic and treatment completion. Preliminary efficacy was evaluated per protocol from baseline to post-intervention (n = 41 adults with ADHD and 40 significant others). In a feasibility analysis, the intervention was judged to be a suitable treatment option for 94.5 % of all individuals with a primary diagnosis of ADHD at an outpatient psychiatric clinic. In total, 43 out of 51 allocated individuals with ADHD (84.3 %) completed the intervention. The corresponding figures for their significant others were 42 out of 57 (73.7 %). Knowledge about ADHD increased, and both the quality of relationships and psychological well-being improved from baseline to post-intervention in all participants. The significant others reported a reduction in the subjective burden of care, such as worry and guilt. The objective burden of care (such as financial problems) did not change. The findings support the potential value of psychoeducation for adults with ADHD and their significant others. An ongoing randomized controlled trial will generate further evidence concerning the PEGASUS program.

The overall aim of this thesis was to describe and analyse how the involvement of relatives is conditioned in nursing homes from different critical perspectives. Gender perspectives, discourse analysis and intersectional theory are applied, based on social constructionist ontology. The thesis comprises three qualitative papers and data are based on ethnographically-focused fieldwork in three municipal nursing homes in the form of formal/informal interviews, participating observations and the analysis of documents.

Based on gender perspectives, the routines and reasonings among nursing staff were studied and thematically analysed in relation to how these conditioned the involvement of relatives in the daily caring activities (I). In the second study (II), the nursing staff were interviewed in groups to describe, discursively analyse and identify the biopolitical meaning in the "involvement discourse" that was collectively constructed in the speech of the nursing staff concerning the involvement of relatives. In the last study (III), interviews with relatives were thematically analysed in the context of intersectional theory about their involvement in the nursing homes.

The findings show that the conditions for relatives' involvement were dynamic and constantly in re-negotiation, but also conservative and inflexible. This placed relatives in both privileged and unprivileged social positions in the nursing homes, which were relevant for their involvement. The relatives were considered to be "visitors", which conditioned the characteristics and levels of involvement in the care of the residents and was linked to gendered notions of the division of labor, both within the groups of relatives and between nursing staff and relatives (I). The involvement of relatives was conditioned by the biopolitics of an "involvement discourse" that prevailed in the nursing homes. This built upon family-oriented rhetorics and metaphors that upheld and legitimised notions about relatives. The relatives were considered to be members of the "old" family in relation to the "new" family represented by the nursing staff (II). The relatives described how they were positioned in a betweenship, squeezed between different competing social musts from the older family members, the nursing homes as institutions and the nursing staff (III).

Inverting the prevailing picture of the involvement of relatives would make it possible to consider the nursing staff as pedagogical, professional and caring "visitors" in the nursing homes for the benefit of the residents and their relatives. This could be achieved through a constructive change management which emphasises the learning of nursing staff, their responsibility and the emotions of relatives, along with a focus on alternative notions of involvement, where relatives are included in the development of quality of care in Swedish nursing homes.

A majority of us will at some point in our lives take care of family members, relatives and friends in need of assistance. How will this affect us?

Strain related to life satisfaction (LS) and health related quality of life (HRQoL) among caregivers aged 60 years and older has not been previously studied.

Objectives
The main objective was to describe characteristics of non-caregivers (n = 2233) and caregivers (n = 369). Further objectives were to examine differences in HRQoL and LS between caregivers and non-caregivers, and between caregivers stratified by level of strain.

Methods
We analyzed the differences in socio-demographics, social participation, locus of control and symptoms between groups. HRQoL was assessed by Short Form Health Survey (SF-12/PCS and MCS). LS was measured by the Life Satisfaction Index-A (LSI-A).

Results
Caregivers were younger, had more years of formal education, more often cohabiting and relied less on powerful others than non-caregivers. One hundred and thirty-three (36%) caregivers reported high strain. In a three-group comparison including non-caregivers and caregivers stratified for strain, high strain was associated with lower SF12-PCS, SF12-MCS and LSI-A (0.014, <0.001 and <0.001, respectively).

Conclusion
High strain affects caregivers' HRQoL and LS in a negative way.

Practice
It is important for the health care sector to consider the possibility that symptoms in a person acting as a caregiver can be related to high perceived strain.

Implications
A general policy program aiming to identify caregivers and their needs for support is much needed.

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.

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).

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).

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

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.

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.

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.

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

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.

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.

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.

AIM: This study aimed to describe and compare urban and rural family caregivers'
reactions to caring for a relative with dementia and to examine the associations
between caregiving and socio-demographic factors.
BACKGROUND: Most studies on family caregivers' experiences caring for older
people with dementia have been conducted in urban areas, and little is known
about the experiences of family caregivers living in rural areas.
DESIGN: A cross-sectional study design was used.
METHODS: A total of 102 caregivers (response rate 85%) from urban (n=57) and
rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and
demographic information. Data were analysed using descriptive and inferential
statistics and linear regression models.
RESULTS: Overall, family caregivers reported high satisfaction even if they also
reported high impact on finances and daily living. Rural caregivers experienced a
higher negative impact on finances but reported more support from family members
than urban caregivers. Age, gender and relationship were significantly associated
with four of the five CRA subscales. Educational level and geographical setting
were not associated with any of the CRA subscales.
CONCLUSIONS: The results of the study raise questions about the financial
situation of older female caregivers and on the expectations of built-in family
structures in urban and rural areas. Further studies focusing on the meaning and
constitution of a family would help us to understand how these factors influence
family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE: To provide person-centred care and to avoid
stereotyped caregiving, a better picture of traditions in family caregiving can
improve a more differentiated and appropriate professional caregiving pliable
with the cultural context in which it is carried out.

AIM:
This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors.
BACKGROUND:
Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas.
DESIGN:
A cross-sectional study design was used.
METHODS:
A total of 102 caregivers (response rate 85%) from urban (n=57) and rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models.
RESULTS:
Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales.
CONCLUSIONS:
The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE:
To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out.

Det finns idag mycket kunskap om barn med neuropsykiatriska funktionsnedsättningar (NPF) som uppmärksamhetsstörning med hyperaktivitet (Attention-Deficit/Hyperactivity Disorder ADHD) och autismspektrumtillstånd (AST). Det finns också en del kännedom om vilka konsekvenser barnens svårigheter får för individ och samhälle. Det är konstaterat att ADHD och AST kvarstår i vuxen ålder, även om symtombilden och problematiken kan te sig annorlunda. Kunskapen om föräldraskap hos vuxna med ADHD eller AST är dock begränsad. Syftet med denna studie var att på ett systematiskt sätt sammanställa kunskap om barn och föräldrar när föräldrar har konstaterad ADHD, ADHD-symtom eller AST samt evidens för metoder som syftar till att ge stöd i föräldraskapet. Tre frågeställningar har styrt arbetet:
1. Vad vet man om hur barnet och föräldraskapet påverkas när förälder/rar har
konstaterad ADHD?
2. Vad vet man om hur barnet och föräldraskapet påverkas när förälder/rar har
konstaterad AST/Aspergers syndrom?
3. Vilka evidensbaserade metoder prövade på dessa målgrupper finns som kan
påverka föräldraskapet och barnet/en?

Drawing on more than 40 years of experience conducting applied social science research and program evaluation, author Michael Quinn Patton has crafted the most comprehensive and systematic book on qualitative research and evaluation methods, inquiry frameworks, and analysis options available today. Now offering more balance between applied research and evaluation, this Fourth Edition illuminates all aspects of qualitative inquiry through new examples, stories, and cartoons; more than a hundred new summarizing and synthesizing exhibits; and a wide range of new highlight sections/sidebars that elaborate on important and emergent issues. For the first time, full case studies are included to illustrate extended research and evaluation examples. In addition, each chapter features an extended "rumination," written in a voice and style more emphatic and engaging than traditional textbook style, about a core issue of persistent debate and controversy.

Avhandling

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.

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".

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.

Structural equation modeling was used to test a theoretical model in which family cohesion and family reframing coping were hypothesized as mediators between family drinking problems, multiple risk factors, negative life events, and child mental health (conduct disorder, depression, anxiety) in two-parent families. Family cohesion mediated the relationships of family drinking problems and negative life events to child conduct disorder and depression. Negative life events mediated the relationships of family drinking problems and family multiple risk to child conduct disorder. Family reframing coping did not function as a mediator nor was it related to child mental health when other factors were considered simultaneously. Results indicate that increasing family cohesion and reducing sources of stress within the family (negative life events) represent promising areas of interventions for children with problem-drinking parents.

This article provides a review of the current literature relating to child bereavement. The author also describes the setting up, running and evaluation of group work for bereaved children, and examines how these experiences can help to inform future best practice.

This paper describes the work undertaken with children and adolescents who have lost a significant person in their lives through death. The author works with the paediatric nurse member of a palliative care team running groups for children and adolescents who have been bereaved.

The aim of the project is to invite the child/adolescent as soon as possible after bereavement to participate in groups with others who are grieving. This groups allow participants to express their feelings through art, play and discussion in a safe and confidential environment.

It is hoped by using a preventative approach such as this, that the incidence of some of the results of unresolved childhood grief, such as failed relationships, depression and ill-health in adult life can be minimised.

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

Omsorgens skiftningar - Begreppet, vardagen, politiken, forskningen. R. Eliasson

Several issues impinge on scholars and practitioners interested in adolescent bereavement. First and foremost, adolescent bereavement over the death of a family member or a friend is more prevalent than many persons recognize. Second, scholars and practitioners need models that link adolescent development with adolescent coping during bereavement. Third, models are needed (a) to assist in rethinking what "recovery from bereavement" denotes and (b) to afford criteria for assessing recovery from bereavement. The author reviews findings on bereavement during adolescent development and gives particular attention to three models that enhance our understanding of coping with the life crises bereavement presents to adolescents. One model links grief during adolescence to developmental tasks; another model presents adaptive tasks and coping skills; and the third model identifies sentiments essential for human wholeness. Findings from a variety of studies with bereaved adolescents provide data to test the usefulness of the models. The closing discussion centers on implications for working with bereaved adolescents.

Boken handlar om tjugo unga människors uppväxtvillkor. Gemensamt för dem är att en eller båda föräldrarna varit tunga narkotikamissbrukare under deras uppväxt. Gemensamt för dem är också att de flesta upplevt ett antal separationer från föräldrar eller andra viktiga vuxna. Det är också uppenbart att de flesta av dem trots denna bakgrund har en positiv syn på livet och framtiden. Den övergripande frågan som ställs i boken är hur man kan lyckas i livet - mot alla odds.

I boken som bygger på djupintervjuer med de unga personerna, diskuteras de faktorer som kan vara avgörande för barns återhämtningsförmåga eller motståndskraft. Det här är ett till stor del outforskat område (forskningen har hittills varit inriktad på brist- eller riskfaktorer) och kan hjälpa dem som arbetar inom vård- och behandling att hitta nya metoder och förhållningssätt i arbetet med barn i missbruksfamiljer.

Too many individuals still unnecessarily develop noise-induced hearing loss (NIHL). Interviews with men with NIHL showed their lack of awareness of noise as a threat to hearing. Also, most men were unwilling to acknowledge, or even denied, their hearing problems. Interviews with spouses of men with NIHL showed that the husband's hearing loss often caused misunderstandings and irritation within the family, which had a negative impact on the couple's intimate relationship. The purposes of our group rehabilitation programme, designed for men with NIHL and their spouses, were to give psychosocial support, adequate information and practice in effective coping strategies. A professional approach to treat men with NIHL is to take a patient-centered global perspective, which encourages the patient to identify, describe and acknowledge problems related to his impaired hearing. In the next step, the patient needs professional help to solve experienced hearing related problems. In this process of identification of and solution to problems, family involvement is important and vital.

Omsorgens skiftningar. Begreppet, vardagen, politiken, forskningen. R. Eliasson

Omsorgens skiftningar: Begreppet, vardagen, politiken, forskningen. R. Eliasson

This study reports on the use of the Perceived Social Support from Family and Perceived Social Support from Friends scales (Procidano & Heller, 1983) in a sample of adolescents at the initiation of outpatient treatment. Reliability and validity evidence is presented that generally replicates earlier studies utilizing these instruments. Multiple regression results are also reported, indicating that different combinations of perceived support from family and friends significantly predict psychosocial maturity levels in this clinical adolescent sample.

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Abstract
BACKGROUND:
Two forms of alcoholism with distinct clinical features and mode of inheritance were first distinguished in the Stockholm Adoption Study. This involved a large sample of children born in Stockholm, Sweden, who were adopted at an early age and reared by nonrelatives. Type 1 alcoholism had adult onset and rapid progression of dependence without criminality, whereas type 2 had teenage onset of recurrent social and legal problems from alcohol abuse.
METHODS:
A replication study was carried out with 577 men and 660 women born in Gothenburg, Sweden, and adopted at an early age/by nonrelatives. The genetic and environmental backgrounds of the adoptees were classified by the exact procedures calibrated by discriminant analysis in the original study.
RESULTS:
Both type 2 and severe type 1 alcoholism were confirmed as independently heritable forms of alcoholism in male adoptees. The lifetime risk of severe alcoholism was increased 4-fold in adopted men with both genetic and environmental risk factors characteristic of type 1 alcoholism compared with the others (11.4% vs 3.0%). Neither genetic nor environmental risk factors for type 1 alcoholism by themselves were sufficient to cause alcoholism. In contrast, the risk of type 2 alcoholism was increased 6-fold in adopted sons with a type 2 genetic background compared with others; regardless of their postnatal environment (10.7% vs 2.0%). The sons with a type 2 genetic background in the replication sample had no excess of type 1 alcoholism, and vice versa. There was no increased risk of mild abuse in adopted men regardless of their genetic or environmental background.
CONCLUSION:
Type 1 and type 2 alcoholism are clinically distinct forms of alcoholism with causes that are independent but not mutually exclusive.

Children of alcoholics are commonly pictured as destined to become alcoholics themselves and to develop psychological problems. Research on children of alcoholics, however, has not strongly supported this impression. Rather, there is good reason to believe that children of alcoholics develop a checkerboard of strengths and weaknesses. Although the weaknesses are adequately explained by a traditional risk paradigm that we have called the damage model, the strengths are overlooked. The challenge model and its related vocabulary of strengths extends the damage model by including the possibility that children of alcoholics and other children of hardship can be resilient as well as vulnerable. The model offers a developmental vocabulary of resilience. The challenge model implies that psychiatrists should not launch exclusively a search for pathology in children of alcoholics, but should ask questions of patients more along the line of 'How is your struggle going?'

Abstract [en]

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.

BACKGROUND: The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based, person-centered approach to carer assessment and support within palliative care. As such, it requires a change in practice from a practitioner- to a carer-led assessment and support process. A paucity of research has investigated factors affecting implementation of evidence-based interventions within palliative care. OBJECTIVE: To examine differences between high and low adopters of the CSNAT intervention in terms of practitioner attitudes to the intervention and organizational context. METHODS: Phase IV study of the implementation of the CSNAT intervention at scale in 36 UK palliative care services over 6 months. Survey at baseline and 6 months of practitioners at implementation sites, informed by the Promoting Action on Research Implementation in Health Services (PARIHS) Framework. Survey tools: (a) questionnaire to assess attitudes to the CSNAT intervention; (b) Alberta Context Tool (ACT) to assess organizational context. Monthly data on intervention use enabled service classification as "high" or "low" adopters. RESULTS: Surveys returned at baseline were 157/462 and at 6 months were 69/462. Compared with low adoption services, high adopters were more likely to be hospice, at home, and day services; have a higher ratio of internal facilitators to total staff numbers; and higher scores for ACT "informal interactions" denoting more discussions about care between colleagues. Both had similarly positive attitudes to the CSNAT intervention pre-implementation, but by 6 months low adoption services developed significantly more negative attitudes, while high adoption services attitudes mostly remained the same or improved. LINKING EVIDENCE TO ACTION: Implementation may be more successful for services that offer regular opportunities to use the intervention in practice, have sufficient levels of facilitators, stimulate more staff discussion, and encourage maintenance of positive motivation. Implementation of person-centered interventions needs to plan for such factors. This has informed an implementation toolkit for the CSNAT intervention.

Nazi concentration camp survivors are known to continue to suffer the adverse physical and psychological effects of their internment. This is a study of the effects on their children. A clinical sample of mid-teenage children of survivors was found to have more behavioral and other disturbances and less adequate coping behavior than did a clinical control group. Parental preoccupation is suggested as a contributing factor.

The AML, an l 1-item, 3-factor, quick-screening device for early school maladaptation is described. Test reliability data are reported as well as itemitem and item-scale correlations and factor analytic findings. Norms for Kindergarten-3rd grade are presented, and parametric studies are reported for the variables: sex, grade, and "repeat-in-grade" status. Five additional substantive studies, testifying to the concurrent and empirical validity of the scale, are summarized. Limitations in using the AML are considered. Given its brevity and objectivity, its greatest potentials are in mass, quick-screening of early school dysfunction.

This paper describes the development and evaluation of a 3-hour multimedia community education program on depression and suicide in later life. Designed for families, older adults, and service providers, the program provides information and teaches skills needed to recognize and respond to depression and suicidal behavior in the elderly. Compared with a control group, program participants had significant gains in knowledge and in their intent to take appropriate action in support of a depressed person.

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)

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.

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.

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.

A Handbook containing description of the theoretical basis for study of parental acceptance and rejection, interpersonal relationships, and mental health outcomes related to these relationships. Measures to assess parent-child relations, intimate partner relations, behavioral control, discipline, parenting education, and other issues are included in the Fourth Edition of the Handbook.

Purpose
To obtain caregiver report of children's competencies and behavior problems in a standardized format.
Conceptual Organization
The Child Behavior Checklist/4-16 (CBCL/4-16) was the first of what has become a multi-axial
empirically based set of measures for assessing children from parent, teacher, and self-reports. In 1991,
The CBCL/4-16 was re-normed to include children up to 18 years of age (becoming CBCL/4-18), and
eight cross-informant constructs were identified to facilitate direct comparison between problem
behavior scores on the CBCL, the Teacher Report Form (TRF), and the Youth Self-Report Form (YSR)
(Achenbach, 1991). All three instruments include measurement of the following eight constructs or
syndromes: Social Withdrawal, Somatic Complaints, Anxiety/Depression, Social Problems, Thought
Problems, Attention Problems, Delinquent Behavior, and Aggressive Behavior. The CBCL is the only
measure among the three instruments that contains the Sex Problems scale (Achenbach, 1991).
In addition to focusing on a child's behavior as defined by one of the eight syndrome scales, the CBCL,
TRF, and YSR also allow the examination of two broad groupings of syndromes: Internalizing Problems
and Externalizing Problems. Internalizing Problems combines the Social Withdrawal, Somatic
Complaints, and Anxiety/Depression scales, while Externalizing problems combines the Delinquent
Behavior and Aggressive Behavior scales (Achenbach, 1991).
The three corollary instruments also contain items that assess social competence. The CBCL/4-18
contains 20 competence items grouped into 3 scales (Activities, Social, and School) (Achenbach, 1991).
Item Origin/Selection Process
Items were derived from research and consultation with professionals and parents, and revisions were
based on the findings of numerous pilot studies. For a complete description of item derivation for the
CBCL, see the Manual for the Child Behavior Checklist/4-18 and 1991 Profile (hereafter referred to as
the Manual) (Achenbach, 1991).
Materials
Manual, forms, and computerized scoring programs, available from the publisher.
Time Required
Twenty-five to thirty minutes.
Administration Method
The CBCL is designed to be completed independently by the caregiver. It requires fifth grade reading
ability. The form can also be administered orally by an interviewer who records the caregiver's answers.
There are several items for which the respondent is asked to elaborate about an endorsed behavior in
order to avoid improper scoring.
Training
Requires thorough familiarity with the Manual, especially with the cautions related to commonly
misinterpreted items (Manual, p. 13, pp. 249-250). Please see the Manual for additional information on
training and educational requirements.
Scoring
Score Types
Items are coded from 0 to 2. Instructions for hand scoring the instrument are provided in Appendix A
of the Manual.
Total scores may be computed for Social Competence, Behavior Problems, Internalizing Problems,
Externalizing Problems, and Sex Problems, plus scores for each of the 8 syndrome scales (Achenbach,
1991)
Raw scores can be converted to age-standardized scores (T scores having a mean = 50 and SD = 10) that
can be compared with scores obtained from normative samples of children within the same broad age
range. Please see the Manual for more information on CBCL scores.
Score Interpretation
For the syndrome scales, T scores less than 67 are considered in the normal range, T scores ranging from
67-70 are considered to be borderline clinical, and T scores above 70 are in the clinical range
(Achenbach, 1991) Please see the Manual for additional information on specific syndrome scales
For Total Problems, Externalizing Problems, and Internalizing Problems, T scores less than 60 are
considered in the normal range, 60-63 represent borderline scores, and scores greater than 63 are in the
clinical range (Achenbach, 1991).
Norms and/or Comparative Data
The CBCL/4-18 was normed on a sample of 2,368 non-handicapped 4 to 18 year old children. See
Manual for additional information on norms and comparative data. .
Psychometric Support
Reliability
Information on test-retest reliability and Cronbach's alphas are available from the author (Achenbach,
1991).
Validity
Evidence for content, construct, and criterion-related validity is well documented. See Chapter 6 in
Manual for additional details.

The probands of this study were 60 children and young adults between 5 and 20 years of age, 20 of whom had siblings with autism, 20 of whom had siblings with mental retardation, and 20 of whom had siblings who were free of handicap. The three proband groups were matched for gender, birth order and socioeconomic status. The children were questioned about their sibling relationships and about particular problems they faced concerning their handicapped brothers or sisters and about problems concerning themselves. Parents were interviewed about the healthy child's behaviour and social adjustment. Mothers completed the Eysenck Personality Inventory concerning themselves. Siblings of handicapped children and especially siblings of children with autism were more concerned about the future. They also felt lonely more often and many of them had peer problems. They often regarded their handicapped siblings as a burden. They tended to have only one sibling. Siblings often did not know why their handicapped brother or sister was different from other children. There were more behaviour disturbances in the siblings of handicapped children and mothers with a child with autism reported more 'stressful events'. There were no differences as regards the personality of the mothers and the self-concept of the children between the three groups.

The probands of this study were 60 children and young adults between 5 and 20 years of age, 20 of whom had siblings with autism, 20 of whom had siblings with mental retardation, and 20 of whom had siblings who were free of handicap. The three proband groups were matched for gender, birth order and socioeconomic status. The children were questioned about their sibling relationships and about particular problems they faced concerning their handicapped brothers or sisters and about problems concerning themselves. Parents were interviewed about the healthy child's behaviour and social adjustment. Mothers completed the Eysenck Personality Inventory concerning themselves. Siblings of handicapped children and especially siblings of children with autism were more concerned about the future. They also felt lonely more often and many of them had peer problems. They often regarded their handicapped siblings as a burden. They tended to have only one sibling. Siblings often did not know why their handicapped brother or sister was different from other children. There were more behaviour disturbances in the siblings of handicapped children and mothers with a child with autism reported more 'stressful events'. There were no differences as regards the personality of the mothers and the self-concept of the children between the three groups.

Evaluating the impact of early intervention as a means to prevent or ameliorate developmental disabilities has been a long standing problem and the issue of effectiveness continues to be debated. This study explored the utility of Goal Attainment Scaling as a planning and evaluation tool whereby intervention outcomes for infants and families could be documented. The 23 families in this study were participants in a larger research effort evaluating the implementation of community based, family-focused intervention. An average of 5.9 goals were written for each family, with approximately 60% of goals written for infants and 40% for families. Attainment of goals was evident in a mean T-score of 51.9 for post-test values and in documentation that approximately two-thirds of all goals were attained at least at the expected level. The practical features of Goal Attainment Scaling and the correspondence of goal attainment scores with other measures of change suggest that it may be a valuable approach to complement traditional evaluation strategies.

This article outlines the history and development of the Snoezelen Centre at Whittington Hall Hospital in Chesterfield. Snoezelen originates from Holland. It is a leisure and recreation facility for people with profound and multiple handicaps. The concept involves creating high quality, purpose built environments which are used in a sensitive and caring way to provide pleasurable sensory stimulation and relaxation. The article describes the environments at Whittington Hall and the activities within them, together with details of the approach to staff development for Snoezelen workers. It also gives the background of a research project associated with the development of the facility, which seeks to evaluate the impact of Snoezelen on the daily lives of the people who use it.

Sixty family caregivers of child, adult, and elderly psychiatric patients were interviewed to determine their unique and common support needs. Content analysis of interview data was used to identify support categories and their properties. Support needs expressed by caregivers paralleled the general types of support described in the social support literature (emotional, feedback, informational, and instrumental); however, for many categories under each general type the specific meaning of the support was directly linked to the psychiatric caregiving role. Most of the differences in support needs among caregivers from the three age groups reflected the caregivers' stage of life and the length of time they had been caregiving. The group of caregivers of adult patients reported having the least support. Although many support needs were expressed, the needed support did not exist.

Den svenska Utredningen om vanvård i den sociala barnavården (i fortsättningen kallad Vanvårdsutredningen) initierades, i likhet med flera andra länder, först efter att människor berättat i media om sina erfarenheter av övergrepp och misshandel från sin tid i barnhem eller fosterhem.

Delrapport och Upprättelseutredning

I januari 2010 presenterade utredningen sin delrapport, "Vanvård i social barnavård under 1900-talet". En direkt följd blev att regeringen tillsatte Upprättelseutredningen som fick i uppdrag att föreslå hur upprättelse för dessa människor skulle kunna utformas.

Upprättelseutredningen överlämnade sitt betänkande till regeringen i februari 2011. Förslagen handlade om en process i tre delar; ett erkännande av det som hänt och en ursäkt, kompensation till dem som utsatts samt åtgärder för att förhindra upprepning.

Slutrapportens syfte

Syftet med slutrapporten är att presentera en fördjupad resultatredovisning där enskilda människor och deras berättelser, får en mer framskjuten placering än i delrapporten. Dessutom har ambitionen varit att diskutera hur det var möjligt att intervjupersonerna kunde råka så illa ut som barn och hur liknande missförhållanden för samhällsvårdade barn ska kunna undvikas i framtiden.

Slutrapportens struktur

Utredningens material omfattar redogörelser i olika former; intervjureferat, inspelade intervjuer, nedtecknade levnadsberättelser, arkivhandlingar, domar och tidningsartiklar. Detta varierande material ger inblick i sammanhang i vilken vanvården skedde och kunskap om den utsatthet som barn och ungdomar inom den sociala barnavården befann sig i.

Den här studiens syfte har varit att delge hur personer som bor på demensboende, och hur anhöriga som har närstående som bor på demensboende, upplever det sociala innehållet. Ett innehåll som utgår från faktorer som bemötande, social samvaro, aktiviteter, utevistelse, inflytande, boendemiljö, kan sammanfattas som ett meningsfullt socialt innehåll.

Vidare var syftet att delge några av de synpunkter och reflektioner som framkom från ett seminarium om Socialt innehåll i vardagen som hölls vid Blekinge kompetenscentrum i november 2009. De som deltog var från olika kommuner i Blekinge och hade i sina yrkesroller på olika sätt arbetat med det sociala innehållet för personer med demenssjukdom.

Caregiving for a family member with severe and persistent mental illness places significant demands on the caregiver. Yet caregivers also report personal rewards from the experience. Multiple regression analyses were conducted for 137 parent and sibling caregivers to compare risk and protective factors for well being, subjective burden, and depressive symptoms among respondents. Sibling status predicted increased well-being. Grief and family stress functioned as risk factors for decreased well-being, more depressive symptoms, and increased subjective burden. Pride for the relative contributed to depressive symptoms but protected against burden, and both informal social support and formal support from providers offered a buffer against depressive symptoms for all caregivers. Intervention strategies to promote resilience and address challenges for caregivers are discussed.

Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin's experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004–2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient's state of mind and care provision). Data also consisted of next-of-kin's self reports concerning health, burden and satisfaction. The result showed that patients' state of mind was mainly positive at baseline but a deterioration was seen over time in the patient's mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients' mood and the caregiver's satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins' general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.

Parents who realize that their newborn child is severely disabled often experience severe physical and emotional stress. Parental well-being is essential for the care-taking of the child. It is yet not known why some cope well and others do not. The aim of this study was to explore how parents coped with parenting a disabled child and how they maintained their energy and personal resources. We explored parents' experiences, coping and resources over a two-year period after their child was diagnosed with a severely disabling condition using a qualitative, longitudinal approach. Findings were interpreted in a theoretical framework of Lazarus and Folkman's studies on coping and Fredrickson's broaden-and-build theory of positive emotions, as well as theories of positive illusions and benefit finding during severe adversity. We found that parents continually created and sustained their personal resources through positive cognitive reappraisals of their circumstances, the consequences of those circumstances and their coping possibilities. Nine main coping strategies were identified constituting transformative pathways in resource-creation. A theory of resource-creation is proposed as an addition to the current understanding of coping and the role of positive emotions. Coping and resources were found to be closely interrelated and portals of intervention are discussed.

The prevalence of resilience in the presence of military violence and the role of child and family characteristics fostering that resilience were analyzed in a Palestinian community sample using a person-based approach. The participants consisted of a random sample of 640 Palestinian children and adolescents, their parents, and their teachers, all living on the Gaza Strip. A medical examination of the children and adolescents was conducted to assess health status on somatic, sensory, and cognitive domains. The results revealed an equal share of resilient (21%; high level of trauma and low level of disorders) and traumatized (23%; high level of trauma and high level of disorders) children. As hypothesized, characteristics of the resilient group were good parental mental health, supportive parenting practices, good school performance, superior cognitive functioning, good physical health, high body weight, and normal birth weight. Variable-based analyses revealed no support for the hypothesis that these family- and child-related factors protect child mental health, although their direct association was confirmed. The discussion focuses on mechanisms fostering child resilience in war zones.

Two graduate students and a professor/clinical supervisor from the art therapy department at New York University discuss their experiences in the wake of September 11, 2001. The authors describe their personal experiences in working soon after the World Trade Center attacks along with their roles as art therapists at a grief camp for traumatically bereaved children. Clinical work with child victims of the attacks is discussed as well as grief experiences of other children. The article addresses how the language of imagery offers an alternative to words in the expression of pain and loss and a glimpse at the resilience of children when allowed a safe haven for grief work, the emergence of universal symbols after a national tragedy, and the unexpected concomitant healing of the trauma experienced by both therapists and children through symbolic imagery.

Examensarbete våren 2011, socionomprogrammet

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.

Families with parental affective disorder participated in a large-scale longitudinal study which involved participation in a standardized, short-term, psychoeducational preventive intervention. These families were followed for at least 3 years. An analysis of clinical material from the first 12 families to complete the intervention identified specific healing principles that contributed to positive changes in behavior and attitude. The healing elements of the intervention included demystification of the illness, modulation of shame and guilt, increase in the capacity for perspective taking, and development of a hopeful perspective and belief in one's own competence. Therapeutic effectiveness evolved in a process that linked cognitive information and presented depression as an illness that could be understood with the acknowledgement of family members' individual and collective experience. In this way, families developed a shared understanding of the illness that was useful over time. This article discusses the ways in which the healing principles promoted changes in family members' behavior and attitude, which, in turn, enhanced resiliency in children.

Den 23 november 1995 bemyndigade regeringen det statsråd som har till uppgift att föredra ärenden om det offentliga skolväsendet och fristående skolor att tillkalla en kommitté (U 1995:14) med uppdrag att utreda hur ansvaret för utbildning och omvårdnad i anslutning till utbildning av funktionshindrade elever skall fördelas mellan stat, kommun och landsting samt vem som skall finansiera verksamheten

Physical activity is beneficial for overall health; however, informal carers may have lower levels of physical activity than non-carers. The primary aim of this systematic review was to identify barriers and facilitators to physical activity from the perspective of carers internationally, excluding the UK. The study found that barriers to physical activity include lack of time, fatigue, lack of motivation and lack of support. Facilitators of physical activity include health and well-being as a motivator, using physical activity as a coping mechanism, and social support. Participating with the care recipient and care duties were both barriers and facilitators depending on the study or participant

Purpose: We aim to investigate systematic differences in reporting spousal care between caregivers and cared-for persons and their possible effects for the analysis of care regimes and correlation of care with health.

Materials and methods: Using information on care provided/received from the Survey on Health, Ageing and Retirement in Europe (SHARE), we estimate the prevalence of spousal care and discordance between caregivers and cared-for persons in the reporting of care among caregiving dyads. Multinomial regressions are used to estimate systematic differences in reporting spousal care. We then use multivariable logistic regressions to assess the association between discordance in reporting informal care and carer's self-rated health (SRH) and depression using the EURO-D scale.

Results: Only 53.9 % of dyads report care that is confirmed by both spouses. Multinomial regressions show that agreement on care being provided/received is more common when women are caregivers, while men are likely to underreport when providing or receiving personal care. Prevalence of spousal care across care regimes is sensitive to who reports care. There is no effect on the association of care with SRH regardless of who identifies the carer, while the magnitude and statistical significance of the association between depression symptoms and care varies according to the choice of respondent.

Conclusions: Informal care may be understated across Europe when relying solely on carer self-identification through description of tasks in surveys. From a policy standpoint, relying on self-identification of carers to access support or social benefits may potentially reduce the take-up of such benefits or support.

Keywords: Dementia; costs; health-economic evaluation; informal care; resource use.

Not only people suffering from severe mental illness (SMI) but also their family members experience stigma. Relatives are met with negative attitudes from healthcare professionals, which adds to the problem. This Swedish study employed a qualitative inductive explorative design in the analysis of written free-text responses from 65 persons who completed a questionnaire for relatives of persons with SMI. The overarching theme, “A vicious circle of hope and despair”, was elaborated by four categories which formed a vicious circle: “Wanting openness, understanding and acknowledgement”; “Facing a lack of understanding from others”; “Seeking understanding from mental healthcare professionals but experiencing the opposite”; and “Keeping family experiences private.” If this vicious circle of family stigma is to be broken, measures are needed for both relatives and health care professionals.

Keywords: Cancer specialist nurse; Colorectal cancer; Family members; Needs assessment; Nursing; Oncology; Qualitative research; Supportive care; Thematic analysis.

Aim: To describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory.

Design: A descriptive qualitative study with a phenomenographic approach.

Method: Individual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist.

Results: The phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support.

Conclusion: Supportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed.

Impact: There is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory.

Implications for the profession and/or patient care: Findings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging.

En rapport från NSPH om livsvillkoren för personer med psykisk ohälsa och deras anhöriga och om brukarinflytande

NSPH Har tagit fram den här rapporten för att lyfta två viktiga områden för oss och våra medlemsorganisationer – om livsvillkoren för personer med psykisk ohälsa och deras anhöriga, samt arbetet med brukarinflytande.
För att få en överblick över dessa två områden har NSPH under 2024 genomfört två större undersökningar. Resultaten från undersökningarna presenteras i varsin del i denna rapport. En del med fokus på livsvillkor för personer med psykisk ohälsa och en del med fokus på arbetet med brukarinflytande. Målsättningen med undersökningarna har varit att kartlägga hur det ser ut idag inom dessa två områden och peka på utvecklingsområden framåt.

Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs.

Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337).

Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39).

Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.

Amyotrophic Lateral Sclerosis (ALS) presents significant challenges for affected families. The aim for this study was to assess the feasibility of using the Strengths and Difficulties Questionnaire (SDQ) with adolescents and parents with and without ALS. The method involved repeatedly distributing the questionnaire to evaluate its content and structure within this group. The SDQ Prosocial Behaviour subscale and total difficulties score was calculated, along with median values and standard deviations. Parent-adolescent agreement was assessed using intraclass correlations. Data were collected from 11 Swedish families, including 14 adolescents (aged 8–25), 9 parents with ALS, and 8 co-parents. The findings revealed differences between parent and adolescent SDQ scores, emphasizing the need for adolescents’ self-assessments. Their SDQ scores did not indicate significant difficulties, suggesting that most were coping well with everyday life. However, there is significant heterogeneity in the experiences and needs of adolescents. A larger study is needed to confirm its usability

Aim: The aim of the study was to qualitatively investigate the adolescents’ need for professional support when a parenthas amyotrophic lateral sclerosis (ALS) – from the adolescents’ and the parents’ perspectives. Methods: A total of 37 indi-vidual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis. Results: Both adolescentsand parents described the adolescents as needing professional support but found it difficult to articulate this need.However, the results indicate that the adolescents needed help in bringing manageability into their lives due to theuncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not for-gotten in the disease context and that their needs for being involved as well as for obtaining information and understand-ing, was addressed. The importance of offering the adolescents support early was emphasized, but also of activelyhelping the families to master challenges in their everyday life. Support adapted to each family’s unique situation andpreferences was desired, as the adolescents’ need for support seemed to be individual, disease-dependent and varied dur-ing different phases. Conclusion: Given the adolescents’ need for information and understanding, healthcare professionalsmust actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given theopportunity to be involved based on their own conditions, as well as to support the families to strengthen theircommunication.

Sudden cardiac arrest is common and is one of the leading causes of death in the western world, and the sudden loss following cardiac arrest may have a significant impact on bereaved family members’ health. Therefore, the aim of this study was to describe symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest, with comparisons between spouses and non-spouses. This was a cross-sectional observation study with 108 adult family members who completed a questionnaire. A fifth of the family members reported prolonged grief, and problems with self-reported health were common, especially regarding anxiety. Spouses reported more problems with prolonged grief and self-reported health compared with non-spouses. The risk of these family members developing prolonged grief and health problems should be recognized, and professional support should be offered.

Abstract [en]

Background: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symp- toms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its asso- ciation with professional and social support among bereaved family members after a close person’s death from sudden CA.

Methods: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support. Qualitative data were collected by open-ended questions. Quantitative data was analyzed using Wilcoxon signed-rank test and linear regression analysis while written comments were analyzed using qualitative content analysis.

Results: The median age was 62 years, 67 % were women, and 38 % had been present during the resuscitation attempts. Using the cut-off scores at the 6- and 12-month assessments respectively, 14 % and 17 % reported symptoms of prolonged grief, 32 % and 26 % symptoms of anxiety, 14 % and 9 % depression, and 4 % and 1 % posttraumatic stress. Professional and social support at the 6-month assessment were significantly associ- ated with symptoms of prolonged grief, anxiety, depression, and/or posttraumatic stress at the 12-month assessments but could not predict any changes in the grief reactions.

Abstract
BACKGROUND:
Little is known on the association between weekly hours of informal caregiving and risk of cardiovascular disease (CVD). The objective was to investigate the individual and joint effects of weekly hours of informal caregiving and paid work on the risk of CVD. METHODS:Pooled analysis with 1396 informal caregivers in gainful employment, from the Swedish Longitudinal Occupational Survey of Health and the Whitehall II study. Informal caregiving was defined as care for an aged or disabled relative. The outcome was CVD during 10 years follow-up. Analyzes were adjusted for age, sex, children, marital status and occupational grade. RESULTS: There were 59 cases of CVD. Providing care >20 h weekly were associated with a higher risk of CVD compared to those providing care 1-8 h weekly (hazard ratio = 2.63, 95%CI: 1.20; 5.76), irrespectively of weekly work hours. In sensitivity analyzes, we found this risk to be markedly higher among long-term caregivers (6.17, 95%CI: 1.73; 22.1) compared to short-term caregivers (0.89, 95%CI: 0.10; 8.08). Caregivers working ≥55 h weekly were at higher risk of CVD (2.23, 95%CI: 1.14; 4.35) compared to those working 35-40 h weekly. Those providing care >8 h and working ≤40 h weekly had a higher risk of CVD compared to those providing care 1-8 h and working ≤40 h (3.23, 95%CI: 1.25; 8.37). CONCLUSION: A high number of weekly hours of informal caregiving as opposed to few weekly hours is associated with a higher risk of CVD, irrespectively of weekly work hours. The excess risk seemed to be driven by those providing care over long periods of time.

Martina Takters syfte med avhandlingen är att utforska anhörigas möjligheter till frivilliga val, autonomi och personlig integritet. Detta i samband med en hjälpbehövandes funktionsnedsättning eller sjukdom för att kontextualisera utifrån vilket sammanhang dessa möjligheter ska förstås. Utgångspunkten för studien är biståndshandläggningens praxis i kommunal vård- och omsorg samt biståndshandläggares förhållningssätt till anhöriga. En slutsats är att biståndshandläggarna genom motivationsarbete lägger fokus på den enskilde som sökande part och mottagare för bistånd och att den anhöriges situation inte ges utrymme vid biståndshandläggningen. Det innebär att den enskildes rätt att avstå erbjudna insatser som t.ex. hemtjänst, oavsett behov och social kontext avgränsar den anhöriges möjligheter till frivilliga val, autonomi och personlig integritet. I förlängningen kan det innebära att den anhörige dels får ta ett ansvar för den enskildes situation utan att ha möjlighet att välja detta, och dels att den anhöriges behov osynliggörs. Genom att ansvaret görs till en privat angelägenhet legitimerar det ett tillbakadragande av det offentligas ansvar.

Mitt masterprojekt är en bok som syftar till att stötta anhöriga till personer med förvärvad hjärnskada, där jag använder mig själv och min egen rehabilitering efter en smitningsolycka som fallstudie.

Om åldrandet hos personer med intellektuell funktionsnedsättning finns inte mycket skrivet. Det är bakgrunden till att Riksförbundet FUB och Svenskt Demenscentrum ger ut denna bok. Att åldras med autism respektive Downs syndrom och När glömska blir ensjukdom är några teman. Vidare behandlas förändrade sociala villkor, när den dagliga verksamheten upphör, och hur våra egnaföreställningar av åldrandet kan påverka personerna. Boken tarockså upp vård i livets slutskede och hur personal och anhörigakan möta existentiella frågor kring döden.

Vid sidan av boken finns två avgiftsfria webbutbildningar om att åldras med intellektuell funktionsnedsättning. Boken och utbildningarna har finansierats av Allmänna arvsfonden.

Att världens befolkning är i åldrande är känt sedan länge. Att denna ökning av äldre kommer att få konsekvenser för vård och omsorg anses vara självklart. Denna bok har som utgångspunkt att konkretisera några av de teman som ryms inom detta fält. Läsaren får inblick i arbetslivsrelaterade teman inom äldreomsorgens organisation och rekryteringsbas, anhörigskap, krisberedskap,internationella jämförelser inom äldreomsorgen, samt omsorg och etnicitet. Boken ger även insyn i hur äldre förhåller sig till samhälleliga normer och föreställningar om åldrandet. Till detta kommer till slut frågan om utvecklandet av nya professioner inom äldreområdet, vilket ska ses mot bakgrund av de delvis annorlunda behov som framtidens äldre förväntas ha.

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

This article examines the developmental conflicts of children of Holocaust Survivors with specific emphasis on psychic trauma and second-generation Survivor effects. Issues related to depression, guilt, and aggression are discussed in relation to Mahler's separation-individuation process. Developmental failures at early phases may predispose these children toward low self-esteem, narcissistic vulnerability, identity problems, and impairments in interpersonal relations. The need for further research and clinical investigation is emphasized to help develop preventive measures and attenuate the effects of the Holocaust on future generations.

For years we have been treating numerous concentration camp survivors in the psychiatric clinics and hospitals of Israel. In recent years we have been seeing increasing numbers of the second generation suffering from a wide spectrum of emotional disorders, personality disturbances, borderline and psychotic states which are clearly related to the long-term effects of massive traumatization in the survivor parents. These effects are manifest in four inter-related areas of disturbance within the family—the parents' mental state, the family atmosphere, inter-personal functioning in the family and specific distortions in the parent-child interaction. Excessive talking about holocaust experiences to children, or the opposite —lack of communication, avoidance and denial of these experiences—are patterns frequently found in the children of survivors who seem to be most affected by the massive traumatization of the parents. It is postulated that therapy of the survivor parents can modify the transmissions of affects to the children. Family therapy is indicated whenever possible.

For years we have been treating numerous concentration camp survivors in the psychiatric clinics and hospitals of Israel. In recent years we have been seeing increasing numbers of the second generation suffering from a wide spectrum of emotional disorders, personality disturbances, borderline and psychotic states which are clearly related to the long-term effects of massive traumatization in the survivor parents. These effects are manifest in four inter-related areas of disturbance within the family—the parents' mental state, the family atmosphere, inter-personal functioning in the family and specific distortions in the parent-child interaction. Excessive talking about holocaust experiences to children, or the opposite —lack of communication, avoidance and denial of these experiences—are patterns frequently found in the children of survivors who seem to be most affected by the massive traumatization of the parents. It is postulated that therapy of the survivor parents can modify the transmissions of affects to the children. Family therapy is indicated whenever possible.

A study to produce a reliable, methodological precise
measure of generalized locus of control of reinforcement, which can
be group administered to a wide range of children, is reported. The
measure produced, the Nowicki-Strickland Locus of Control Scale, is a
paper and pencil instrument of 40 questions which are marked either
yes or no. The scale was administered to 1017 mostly Caucasian
elementary and high school students, grades 3 through 12, with all
socioeconomic levels except the very highest represented. All mean
intelligence scores were in the average range. Results of the test
administration include: (1) the student's responses became more
internal with age, and substantial individual dif ferences occurred at
the third-grade level; (2) all item-total relationships were moderate
but consistent for all ages; (3) locus of control scores were not
significantly related to social desirability; (4) it was tentaively
concluded that internality is related significantly to higher
occupational level, especially for males; and (5) there was a clear
relationship between locus of control and achievement scores; all
correlations were negative, with most of the significant correlations
present in the male group. Two revised scales of 20 items and 21
items for primary and secondary groups, respectively, were
constructed; the scale was also adopted for use with college and
adult subjects. Eight tables present the study data, and samples of
the 20 and 21 item scales are given. (DB)

Nangijala, där det ännu är lägereldarna och sagornas tid, det är dit man kommer när man dör. Det berättar Jonatan för sin bror Skorpan som ligger hemma i köket och hostar och är rädd för att dö. Men Jonatan säger att han inte behöver vara rädd, för de kommer att ses i Nangijala. Astrid Lindgrens saga om bröderna Lejonhjärta är en klassisk berättelse om liv och död, syskonkärlek och mod. Kapitelbok från 6 år.

Abstract [en]

BackgroundFamily sense of coherence (FSOC) seems to reduce distress in the family and promote the well-being of the family. Therefore, getting accurate measurements for families with long-term illnesses is of particular interest. This study explores dyadic data analysis from the dyadic- and single-informant perspectives, and the measurement properties of the FSOC-S12 according to the Rasch model.MethodsRacked and stacked data from 151 dyads were analyzed according to the polytomous Rasch model.ResultsNotably, both the dyadic- and single-informant perspectives (i.e., racked and stacked data set-ups) showed measurement properties with minor deviations from the Rasch model according to fit statistics. However, most items had disordered thresholds and some problems with local dependency. Item hierarchies were similar in both set-ups and there was no differential item functioning (DIF) by role from the dyadic informant perspective. Four items showed DIF by informant role in the single-informant perspective.ConclusionsOur approach to handling dyadic data has shown both strengths and limitations in the evaluation of FSOC-S12, and the understanding of FSOC as a construct from the family's view of the family's ability as a whole (dyadic-informant perspective) and patient's and family member's separate views of the family's ability as a whole (single-informant perspective).

Background: Suicide bereavement increases the probability of adverse outcomes related to grief, social functioning, mental health, and suicidal behavior. While more support for individuals bereaved by suicide has become available, the evidence regarding its effectiveness is not straightforward. The literature suggests that identifying best-practice components is key in designing effective postvention interventions. Aims: This metareview aims to identify components of suicide bereavement interventions perceived to be effective by suicide-bereaved people. Method: The review adhered to preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. Systematic searches in Medline, PsycINFO, Embase, Emcare, EBM Reviews, Scopus, and Web of Science identified 11 eligible systematic reviews published between 2008 and 2023. The methodological quality was assessed using the Measurement Tool to Assess Systematic Reviews (AMSTAR-2) (PROSPERO registration CRD42023458300). Results: Our narrative synthesis reported the components perceived to be effective in relation to structure and content of interventions, facilitators, and modality (peer, group, community, online). Limitations: The quality of the included reviews varied considerably, and not all reviews reported on perceived effectiveness of interventions' components. Meta-analysis of findings was not possible due to study heterogeneity. Conclusion: The findings provide crucial information for researchers, service providers, and policymakers to enhance the provision of evidence-based support for people bereaved by suicide.

The family caregiver of a person with Alzheimer's disease still experiences, in most cases, negative consequences in their biopsychosocial environment, which are related to the acquisition of this role. However, it has been observed that this fact is not universal in this type of population since benefits can be obtained in the act of caring through the development of resilience. Given this possibility and given that nurses are the health professionals who support people in this illness process, there is an urgent need to identify which non-pharmacological interventions could improve or promote resilience in family caregivers of people with Alzheimer's disease. Therefore, our overall objective was to determine which interventions are useful in promoting resilience in family caregivers of people with Alzheimer's disease through a scoping review. The data were analysed using an adapted version of Arksey and O'Malley's methodological framework, after critically reading the articles with the CasP and MMAT tools. Nine articles were included (five analytical experimental, two quantitative and two mixed). Three types of interventions related to promoting resilience in family caregivers of people with Alzheimer's disease were identified: meditation, multicomponent psychoeducation and creative art; nurses participated as co-therapists in the last two.

Introduction: Informal caregivers of elderly people with dependency (EPD) provide intensive care that can affect their quality of life (QoL). Psychosocial interventions such as music therapy are important to work on their self-care. The aim of this study is to analyze, with a mixed method approach, the experience of participating in a Songwriting Group Music Therapy (SGMT) intervention on informal caregivers of EPD.

Methods: A total of 11 groups, with a convenience sample of 61 caregivers, received 10 SGMT sessions. Quantitative information related to QoL variables (anxiety, depression, spirituality, burden, and coping) was collected before and after the intervention and at 3 months of follow-up. Regarding qualitative data, an open-ended question about the experience of participating was asked.

Results: Significant changes were shown, sustained over time, in trait anxiety and depression and subscales including inner peace, social functioning, and mental health. Three themes were generated from the thematic analysis, including that SGMT participation can enhance personal growth, bring out and enable work on emotions, and promote helpful interpersonal dynamics.

Discussion: The findings indicate that SGMT is a useful intervention for informal caregivers of EPD, promoting psychological adjustment, enhanced coping, emotional regulation, and social support. This study reinforces the findings with caregivers of other populations, providing new results and highlighting the benefits of SGMT for caregivers of EPD.

With the population aging, more people are living with neurodegenerative conditions, leading to an influx of informal family caregivers, who often experience negative health outcomes. Few caregiver interventions have successfully adopted a holistic, strengths-based approach to fostering resilience. This article examines existing literature on caregiver resilience factors, which include self-efficacy, flexibility, cultivating positive emotions, and drawing on spiritual and social supports. Despite how dance/movement therapy (DMT) has been shown to foster psychological and physiological benefits, it remains underexplored for caregivers. Therapeutic mechanisms of DMT are expounded for their innate correspondence to resilience factors, and a new comprehensive model of DMT for caregiver resilience is presented, with implications for future intervention design and measurement.

Purpose: This study examined the feasibility and preliminary efficacy of Expressive Writing (EW) in improving informal cancer caregiver (IC) and patient health, and enhancing ICs' emotion regulation.

Method: Fifty-eight breast cancer ICs and patients participated in a randomized controlled feasibility trial of remote EW. ICs were randomly assigned to the EW or control group and completed 3 weekly writing sessions. ICs and patients completed health and emotion regulation assessments at baseline, intervention completion, and 3 months post-intervention. Screening, recruitment, assessment process, randomization, retention, treatment adherence, and treatment fidelity were computed for feasibility. Effect sizes were calculated using the PROMIS Depression Short Form, RAND Short Form 36 Health Survey, Breast Cancer Prevention Trial Hormonal Symptom checklist, healthcare utilization, and the Emotion Regulation Questionnaire for efficacy.

Results: Of the 232 interested individuals, 82 were screened, and 60 enrolled (6 monthly). Two individuals withdrew and 19 were lost to follow-up, leaving 39 individuals. ICs completed at least one assessment and two sessions, and patients completed at least two assessments. All sessions were administered as intended. ICs generally followed instructions (88%-100%), wrote the full time (66.7%-100%), and were engaged (M(SD) = 3.00(1.29)-4.00(0.00)). EW had small-to-medium effects in improving IC health (g = -0.27-0.04) and small-to-large effects in improving patient health (g = -0.28-0.86). EW moderately decreased suppression (g = 0.53-0.54) and slightly increased reappraisal, at least 3 months post-intervention (g = -0.34-0.20).

on strategies and rigorous testing.

Existentiella frågor finns alltid närvarande hos patienter och närstående vid alla former av sjukdom, i all vård och omsorg. Medicinska frågeställningar och fysiska behov är en central del av det som vårdpersonal hanterar och ansvarar för, men hur möter vi de behov som inte är fysiska, men som också påverkar personen som är sjuk? Hur kan vi förmedla öppenhet för dessa frågor? Hur frågar vi? Och vad gör vi med svaren?
Vi vill med den här boken framhålla vikten av existentiella frågor i vården och ge konkreta verktyg för hur man kan fråga, samtala och möta patienter och närstående. Det handlar inte bara om det enskilda vårdmötet utan även om frågor som rör livskvalitet på ett djupare plan, alltifrån att vilja genomgå rehabilitering, att hitta ny mening efter trafikolyckan eller att leva med en långvarig neurologisk sjukdom – men också om hur livets slut kan bli. I allt detta behövs det kunnig vårdpersonal som med sitt arbete bidrar till att skapa välbefinnande och mening. Boken vänder sig till studenter i alla hälso- och sjukvårds­utbildningar oavsett nivå, men även redan utbildad vårdpersonal har nytta av att läsa boken.

The purpose of this paper is to explore the meanings of outdoor physical activity in the natural environment for parentally-bereaved young people. It draws on data generated from a two-year ethnographic study that focused on the experiences of those involved with the Rocky Centre, a childhood bereavement service in the UK. Data was collected via extended periods of participant observation and semi-structured interviews with both staff and service users. One of the key themes to emerge from the analysis was that of physical activity in different environments. The meanings that the parentally-bereaved young people attributed to outdoor physical activity clustered around four sub-themes. These were: sense of freedom; distraction/escapism; retaining memories; and family cohesion. Each of these are considered in detail and their implications for future practice and research are discussed.

Aim: The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home. Background: Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image. Design: Qualitative descriptive study. Methods; Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6–12 months after the death of the family member. The interviews were analysed with interpretive description. Result: Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space. Conclusions: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home. Relevance to clinical practice: This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.

Purpose. To describe a measure and its performance specific to the relationship of personal factors and subjective well-being (SWB) to the use of assistive technology devices (ATDs). The primary hypothesis is that responses to a 33-item personal factors scale and a 12-item SWB scale are good indicators of an individual's predisposition for using, and subsequent match with, a given ATD.
Methods. Data analyses from a number of studies using the 33-item personal factors and the 12-item SWB scales of the Assistive Technology Device Predisposition Assessment with persons of various ages and types of disabilities.
Results. Regardless of type of disability or age of respondent, the ATD PA personal factors and the SWB scales identified important differences in predispositions to use an ATD as well as the subsequent quality of the match of person and device.
Conclusions. A quantifiable relationship exists between the ATD PA's measure of personal factors and the SWB such that it is possible to characterise an individual's predisposition to use a particular ATD. Results also show that the scales are predictive of the quality of the ATD and user match at follow-up. Rehabilitation practitioners who use the ATD PA may achieve enhanced assistive technology service delivery outcomes by using this evidence-based measure.

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

The causes and effects of marketization of public services have been analysed extensively in the literature, but there is relatively little research on how those policies impact on the development of new forms of governance, and the role of users in these new arrangements. This study reviews examples of competition, freedom of choice and personalized care in health and social services in England and Sweden, in order to examine the type of relationships emerging between the user/consumer vis-à-vis market driven providers and various agencies of the state under the marketized welfare. The article focuses on the possible roles users might assume in new hybrid arrangements between markets, collaborations and steering. A user typology: namely, that of a consumer, citizen, co-producer and responsibilized agent in various governance arrangements, is then suggested. The article concludes by arguing that pro-market policies instead of meeting the alleged needs of post-modern users for individualized public services are likely to promote a new type of highly volatile and fragile partnerships, and create a new subordinated user who has no choice but to 'choose' services they have little control over.

OBJECTIVE:
To review evidence of trauma and exile-related mental health in young refugees from the Middle East.

METHOD:
A review of four empirical studies: i) a qualitative study of 11 children from torture surviving families, ii) a cohort study of 311 3-15-year-old asylum-seeking children, iii) a qualitative study of 14 members of torture surviving families and iv) a follow-up study of 131 11-23-year-old refugees.

RESULTS:
The reactions of the children were not necessarily post-traumatic stress disorder specific. Seventy-seven per cent suffered from anxiety, sleep disturbance and/or depressed mood at arrival. Sleep disturbance (prevalence 34%) was primarily predicted by a family history of violence. At follow-up, 25.9% suffered from clinically relevant psychological symptoms. Traumatic experiences before arrival and stressful events in exile predicted internalizing behaviour, witnessing violence and frequent school changes in exile predicted externalizing behaviour. School participation, Danish friends, language proficiency and mother's education predicted less long-term psychological problems.

CONCLUSION:
Psychological problems are frequent in refugee children, but the extents are reduced over time in exile. Traumatic experience before arrival is most important for the short-term reaction of the children while aspects of life in exile are important for the children's ability to recover from early traumatization.

Although different types of childhood trauma have many common characteristics and mental health outcomes, traumatic loss in children and adolescents has a number of distinctive features. Most importantly, youth who experience a traumatic loss may develop childhood traumatic grief (CTG), which is the encroachment of trauma symptoms on the grieving process and prevents the child from negotiating the typical steps associated with normal bereavement. This article discusses the distinctive features of CTG, how it is different from normal bereavement, how this condition is assessed, and promising treatments for children who experience a traumatic loss.

This effectiveness study presents the results of a 1-year follow-up of a randomized controlled trial of Parent Management Training. Families of 112 Norwegian girls and boys with clinic-level conduct problems participated, and 75 (67%) families were retained at follow-up. Children ranged in age from 4 to 12 at intake (M　=　8.44). Families randomized to the control group received an active treatment alternative as would be normally offered by participating agencies. Multi-informant, multisetting outcome measures were collected and results from both intention-to-treat and treatment-on-the-treated analyses are presented. In two separate indirect effects models, assignment to Parent Management Training-the Oregon model predicted greater effective discipline and family cohesion at postassessment, which in turn predicted improvements in several child domains at follow-up.

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

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

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

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

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

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

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

This study investigated the effects of scripted task analytic lessons with systematic prompting on engagement and comprehension of students with a multiple, severe disability using a multiple probe single case design. Three teachers followed the scripts to include a target student in a story based lesson to increase comprehension and engagement. All three students had both a severe intellectual disability and either a severe physical or sensory impairment and relied primarily on nonsymblic communication prior to the study. Each student used a different response mode to participate in the story based lesson (i. e., eye gaze response for a student with inconsistent hand use, point response for a student who grabbed, and object response for a student with visual impairments). Results indicated increases in both comprehension and engagement for all three students. Limitations and implications for research and practice are discussed. © Division on Autism and Developmental Disabilities.

Many children born with severe and multiple disabilities have complex communication needs and may use no speech or only minimal speech to communicate. Meaningful assessment of their expressive skills to identify communication strengths along a developmental trajectory is an essential first step toward appropriate intervention. This article describes the foundations, structure, properties, and use of the Communication Matrix, an assessment instrument developed specifically to address the challenges of describing the expressive communication skills of children with severe and multiple disabilities. The widely used online version of this assessment tool collects data in an associated database. Sample data on children with specific disabilities generated by this database are presented to illustrate the clinical and research potential of this free assessment service. © Hammill Institute on Disabilities 2011.

Many children born with severe and multiple disabilities have complex communication needs and may use no speech or only minimal speech to communicate. Meaningful assessment of their expressive skills to identify communication strengths along a developmental trajectory is an essential first step toward appropriate intervention. This article describes the foundations, structure, properties, and use of the Communication Matrix, an assessment instrument developed specifically to address the challenges of describing the expressive communication skills of children with severe and multiple disabilities. The widely used online version of this assessment tool collects data in an associated database. Sample data on children with specific disabilities generated by this database are presented to illustrate the clinical and research potential of this free assessment service.

Many children born with severe and multiple disabilities have complex communication needs and may use no speech or only minimal speech to communicate. Meaningful assessment of their expressive skills to identify communication strengths along a developmental trajectory is an essential first step toward appropriate intervention. This article describes the foundations, structure, properties, and use of the Communication Matrix, an assessment instrument developed specifically to address the challenges of describing the expressive communication skills of children with severe and multiple disabilities. The widely used online version of this assessment tool collects data in an associated database. Sample data on children with specific disabilities generated by this database are presented to illustrate the clinical and research potential of this free assessment service.

Anhöriga som vårdar eller stödjer en närstående ska erbjudas stöd, enligt en ny bestämmelse i socialtjänstlagen. Bestämmelsen innebär att många kommuner behöver uppmärksamma målgrupper som de inte har uppmärksammat tidigare. En av dessa målgrupper är anhöriga till personer med långvarig psykisk sjukdom eller psykisk funktionsnedsättning. Mats Ewertzon – doktorand vid Örebro universitet och adjunkt vid Högskolan Dalarna – beskriver här de anhörigas situation och resonerar
kring hur stödet kan utformas. Artikeln är den första av två som handlar om stöd till målgruppen

Under 2008 – 2009 genomförde Enheten för FoU-stöd, Regionförbundet Uppsala län ett utvecklingsprojekt tillsammans med en personalgrupp vid ett särskilt boende i Enköpings kommun samt en personalgrupp vid ett hemtjänstdistrikt i Tierps kommun.

Syftet med projektet var att införa och stärka ett anhörigperspektiv i den ordinarie äldreomsorgen. Vid uppföljning hösten 2009 framkom att flera förbättringar har genomförts i verksamheterna som en följd av projektet. Projektet presenteras i den här rapporten.

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.

Att vara äldre anhörigvårdare kan innebära en svårbemästrad situation,
som tär på anhörigvårdarens hälsa och välbefinnande och som till och
med kan innebära en risk för ökad dödlighet. Den ibland alltför tunga
vårdbördan kan ha ett starkt negativ inverkan på anhörigvårdarens
hälsa pga. t.ex. stress, sömnlöshet, utmattning, depression, och oro.
Dock kan anhörigvårdandet också innebära glädje och tillfredsställelse.
Denna översikt baserar sig på information i 31 svenska vetenskapliga
artiklar om äldre anhörigvårdares hälsa.
De flesta artiklar belyser olika faktorer i vårdsituationen; t.ex. tillgänglighet
eller omfattning av anhörigvårdarens sociala nätverk, anhö-
rigvårdarens ekonomiska situation, ålder, kön, fysiska symtom, bemästringsstrategier,
tillfredsställelse, betydelsen av den sjukes diagnos
eller stödets utformning. Det framträder mycket tydligt i denna översikt
att det är bakom situationsfaktorer och handlingar som de kanske
starkaste, och oftast omedvetna, motivationselementen ligger; dvs.
anhörigvårdarens övertygelser och föreställningar. Föreställningarna,
tillsammans med upplevelserna, i synnerhet av ömsesidighet i vårdandet,
bildar ett levande dynamisk system som är unikt för varje individ
och familj.
Mest betydelsefullt är att eftersträva att hjälpa anhörigvårdare att
uppleva ömsesidighet i vårdandet och att försöka förstå anhörigvårdandet
så som det sker i ett kraftfält av föreställningar om varför och
hur man bör vårda den sjuke. Utan att vara medvetna om anhörigvårdarnas
egna föreställningar och upplevelser kommer vi – professionella,
anhörigvårdare, den sjuke, familjemedlemmar och vänner –
att treva i blindo när vi försöker hjälpa till.
Slutsatsen i denna rapport är att anhörigvårdares hälsa påverkas,
förbättras eller försämras, beroende på 1) anhörigvårdarens föreställningar
om anhörigvårdandet, 2) anhörigvårdarens upplevelse av öm-
~ 8 ~
sesidighet både i familjerelationer och i relationer med berörd personal,
och 3) om lämpliga stödinsatser finns tillgängliga.

Att växa upp med ett funktionshindrat syskon

Annorlunda syskon handlar om hur det kan vara att växa upp med ett funktionshindrat syskon. Om svårigheter och glädjeämnen och hur det kan prägla de friska barnen.

Boken bygger på intervjuer med nio vuxna syskon där författaren Frida Blomgren har utgått ifrån tio frågeställningar, en för varje kapitel. Det som främst slår en är hur mycket de olika syskonen har gemensamt, både egenskaper och erfarenheter, trots att deras familjer och hemförhållanden har sett olika ut.

Många berättelser handlar om den oro för sjukdom som fanns under barndomen. När syskonen blir äldre finns också tanken på att den dag föräldrarna inte längre orkar eller är kvar i livet, kommer ansvaret att läggas på det friska syskonet. Samtidigt har många nära till glädje och de har lärt sig att inte oroa sig i onödan utan att leva i nuet.

The latest researches adopted software technology turning the Nintendo Wii Balance Board into a high performance change of standing posture (CSP) detector, and assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture). This study extends Wii Balance Board functionality for standing posture correction (i.e., actively adjust abnormal standing posture) to assessed whether two persons with multiple disabilities would be able to actively correct their standing posture by controlling their favorite stimulation on/off using a Wii Balance Board with a newly developed standing posture correcting program (SPCP). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Data showed that both participants significantly increased time duration of maintaining correct standing posture (TDMCSP) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.

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.

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.

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.

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.

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

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

Substance-dependent patients (N=29) living with a family member other than a spouse were randomly assigned to equally intensive treatments consisting of either (a) Behavioral Family Counseling (BFC) plus Individual-Based Treatment (IBT) or (b) IBT alone. Outcome data were collected at baseline, post-treatment, and at 3- and 6-month follow-up. BFC patients remained in treatment significantly longer than IBT patients. BFC patients improved significantly from baseline at all time periods on all outcomes studied, and had a medium effect size reflecting better primary outcomes of increased abstinence and reduced substance use than IBT patients. For secondary outcomes of reduced negative consequences and improved relationship adjustment, both BFC and IBT patients improved significantly and to an equivalent extent. The present results show BFC is a promising method for retaining patients in treatment, increasing abstinence, and reducing substance use. These results also provide support for larger scale, randomized trials examining the efficacy of behavioral family counseling for patients living with family members beyond spouses.

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

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

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

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

Freedom, dignity and equality - the core values of the South African Constitution (1996) - provide the foundation for developing inclusive societies.

The purpose of this two-year ethnographic study was to explore the experiences of parentally bereaved young people who sought support from the Rocky Centre (a pseudonym), a childhood bereavement service in the United Kingdom. Data were generated from extended periods of participant observation and semi-structured interviews with both staff and service users. In this article we focus specifically on the interviews with 13 young people to elucidate the factors that helped them to live with parental bereavement. Of these participants, four had been recently bereaved and nine had experienced the death of a parent over ten years ago. Seven key themes emerged from the analysis of the interview data: expressing emotion, physical activity, positive adult relationship(s), area of competence, friendships/social support, having fun/humour and transcendence. These themes are discussed in turn, and implications for research and practice are addressed.

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

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.

Objectives: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.Methods: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.Results: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61).Significance Of Results: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.

Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.

Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.

Den 1 juli 2009 infördes en ändring i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, som tydliggör att socialtjänsten ska erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en person med funktionsnedsättning. Anhörigstödet ska kännetecknas av individualisering, flexibilitet och kvalitet. Regionerna saknar motsvarande skyldighet, men hälso- och sjukvården har ett ansvar att identifiera och arbeta hälsofrämjande och förebyggande med personer eller grupper som riskerar att drabbas av ohälsa. Eftersom många anhöriga riskerar just detta har regeringen tidigare markerat att de omfattas av detta ansvar. Denna rapport redovisar ett regeringsuppdrag till Socialstyrelsen att lämna ett samlat underlag för en bred nationell strategi för anhöriga som vårdar eller stödjer närstående äldre personer. Syftet med den kommande strategin är att utifrån bästa tillgängliga kunskap bidra till att stöd till anhöriga som vårdar eller stödjer en närstående äldre är tillgängligt och utformat efter behov

Syftet med denna studie är att skapa en översikt
och en systematisk redovisning. Förhoppningen
är också att projektet utvecklas till att bli en
återkommande studie med jämnt intervall för
att på sikt bidra till större jämlikhet mellan
kommunerna och få en mer systematisk översikt.
Projektet syftar också till att inspirera kommuner
samt lyfta några exempel från kommunerna av
det som görs runt om i landet.
En sammanfattning av resultatet kommer att
finnas tillgängligt i en Excel-fil på Anhörigas
Riksförbunds hemsida, anhorigasriksforbund.se.
Excelfilen kan användas för att skaffa sig en
överblick av stöd till anhöriga och fördjupa sig
ytterligare i resultaten. Den kan också användas
i arbetet med att ta fram idéer om hur man
bygger upp och vidareutvecklar ett stöd till
anhöriga, som är tillgängligt för alla anhöriga
oavsett ålder och diagnos hos den närstående.

Avhandling

Abstract [sv]
När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.

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

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

Abstract:
Exploring the specific field of care robot orientation generates many questions regarding the meaning, content and how it should be conducted. The issue is important due to the general digitalisation and implementation of welfare technology and care robots. The aim of the study was to explore perceptions of care robot orientation from the potential users' perspective. Data were collected by focus group interviews in Finland, Germany and Sweden. In all three countries, potential user groups were represented: older adults, relatives, professional caregivers and care service managers. A qualitative descriptive method was used for analysing data. The data revealed three aspects of care robot orientation: (1) What care robot orientation is, (2) Who needs it and by Whom it should be given and (3) How it should be performed. The need for care robot orientation is general in society. In the absence of knowledge about care robots, it is nearly impossible to know what to ask for or actually seek information about. Therefore, care robot orientation must be founded on agile implementation planning for care robots, with a firm basis in trustworthy knowledge and information and respecting individuals' wishes. This also gives rise to an ethical challenge when care robots are offered to people having reduced decision-making ability (dementia, cognitive impairment), along with the issue of who then should make the decision. The mapping of the What, Who/Whom and How aspects of care robot orientation offers a foundation for the creation of orientation models, which might facilitate structured and goal-oriented care robot orientation strategies.

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.

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.

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.