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"Childlessness at the end of life: evidence from rural Wales."

Wenger, C. G. (2009)

ABSTRACT After the spouse, children are the most likely source of informal support for an older person when the frailties of advanced old age create the need for help. Childlessness may thus be seen as particularly a problem for older people. In general, to compensate for the lack of children, childless people develop closer relationships with available next-of-kin and non-kin. Despite this, in times of need they are likely to find themselves with inadequate informal support. Using data from the Bangor Longitudinal Study of Ageing, this article explores the consequences of childlessness among persons aged 85 years or more living in rural Wales. The results indicate that by the time they reach old age, childless people have adapted to their situation and developed expectations consistent with being childfree. They have closer relationships with collateral kin, friendships are important and a high value is placed on independence. Nevertheless, unless they die suddenly or after a short acute illness, almost all of them enter residential care or a long-stay hospital at the end of their lives. It is also shown that the situation of childless people varies greatly and depends on several factors, particularly marital status, gender, social and financial capital, and on the person's earlier investment in the strengthening of next-of-kin and non-kin networks.

A Randomized Controlled Effectiveness Trial of Parent Management Training With Varying Degrees of Therapist Support

Kling, Å., Forster, M., Sundell, K., & Melin, L. (2010)

This study examined the effectiveness of a Swedish parent management training (PMT) intervention for parents of children aged 3 to 10 within the context of regular social service. Self-referred parents of 159 children (aged 3 to 10) with conduct problems were randomly assigned to either 11 practitioner-assisted group sessions (PMT-P), or a single instructional workshop followed by self-administration of the training material (PMT-S), or a waitlist control group. Intent-to-treat analyses showed that both PMT-P and PMT-S improved parent competence and reduced child conduct problems compared to the waitlist at posttest. Both training conditions showed further significant improvements at the 6-month follow-up. In direct comparison, PMT-P was superior to PMT-S on measures of child conduct problems at both posttest and follow-up. Improvement in child conduct was mediated by improvement in parent competencies and homework fidelity. The findings in this study have implications for large-scale dissemination of parent management training through different means of delivery.

A register study of life events in young adults born to mothers with mild intellectual disability

Lindblad I, Billstedt E, Gillberg C, Fernell E (2014)

BACKGROUND: Young adults, born to population-representative mothers with
intellectual disability (ID), were targeted for psychosocial/life event
follow-up.
METHODS: The whole group originally comprised 42 individuals but 3 had died and 1
had moved abroad. The remaining 38 were approached and 10 consented to
participate in an interview study. However, of the remaining 28, it was not
possible to establish contact with 21 who were instead searched for in various
official registers.
RESULTS: Most (n = 18) individuals in the study group had been in contact with
different authorities and clinics. Of the 21 individuals, 10 had contact with
social services since childhood and 4 of these had been taken into care (foster
family) and 6 had had contact families during childhood. One individual had been
taken into a treatment centre and one grew up mainly with the father. Altogether
12 (57%) of 21 individuals did not grow up full-time with their biological
mother. Twelve (57%) had major neurodevelopmental/neuropsychiatric conditions,
including five with ID and seven with attention-deficit hyperactivity disorder
(ADHD). Four individuals were registered within the Prison and Probation Service
due to various types of crimes.
CONCLUSION: Individuals born to mothers with ID in our study group were at high
risk of adverse experiences and negative outcomes, such as increased childhood
mortality, a relatively large proportion of children taken into care, high rates
of ID and ADHD in the children and of criminality in young adulthood. Taken
together with the results obtained in an in-depth interview study of those in the
originally targeted sample with whom it was possible to obtain contact, the
present findings suggest that it will be important to provide early support and
longitudinal developmental follow-up in groups of children growing up with a
mother with ID. Children in this situation appear to be at a number of risks,
probably related both to hereditary factors and to social disadvantage.

A systematic review of action imitation in autism spectrum disorder.

Williams J, Whiten A, Singh T. (2004)

Imitative deficits have been associated with autistic spectrum disorder (ASD) for many years, most recently through more robust methodologies. A fresh, systematic review of the significance, characteristics, and underlying mechanism of the association is therefore warranted. From 121 candidates, we focused on 21 well-controlled studies involving 281 cases of ASD. Overall, children with ASD performed worse on imitative tasks (Combined Logit p value < .00005). The emerging picture is of delayed development in imitation, implicating a deficit in mapping neural codings for actions between sensory and motor modalities, rather than in motivation or executive function. We hypothesise that ASD is characterised by abnormal development of these mappings, such that they are biased towards object-oriented tasks at the expense of those required for action imitation per se.

A treatment outcome study of bereavement groups for children

Tonkins, S.A. & Lambert, M.J. (1996)

ABSTRACT An empirical study of the effectiveness of an eight-week children's bereavement psychotherapy group was undertaken. Children, aged 7–11, who had a parent and/or sibling die were initially assigned to either a treatment group or a waiting list control group and followed over an eight-week period. Participation in the experimental group was associated with a significant decrease in symptomatology, as assessed by multiple measures using multiple sources. Despite a small sample, the intervention was sufficiently powerful to suggest the use of short-term group therapy to help children cope with the death of a parent and/or sibling.

A treatment outcome study of bereavement groups for children - ResearchGate. Available from: http://www.researchgate.net/publication/226810839_A_treatment_outcome_study_of_bereavement_groups_for_children [accessed Jun 23, 2015].

A Unified Theory of Development: A Dialectic Integration of Nature and Nurture

Sameroff, A. (2010)

The understanding of nature and nurture within developmental science has evolved with alternating ascendance of one or the other as primary explanations for individual differences in life course trajectories of success or failure. A dialectical perspective emphasizing the interconnectedness of individual and context is suggested to interpret the evolution of developmental science in similar terms to those necessary to explain the development of individual children. A unified theory of development is proposed to integrate personal change, context, regulation, and representational models of development.

Activitybased intervention for multiple-disabled visually impaired people

Tellevik JM, Elmerskog B. (2009)

The article describes assessment, planning and training for people with multiple disabilities and visual impairment (MDVI). The ImPAct MDVI project, an EU Comenius programme, addressed concerns expressed by teachers of children and young people with MDVI as to how they are expected to integrate the diverse curriculum elements and particular skills they have been taught into a meaningful educational process. The aim of the project was to develop a holistic teaching approach, based on activities, participation and involvement in real life situations, aiming at involving people with MDVI in their social and physical context. This was achieved by applying a 5-step working model (Tellevik and Elmerskog, 2001), which sought to support the development of assessment and planning intervention strategies.

ADHD ur ett socioekonomiskt perspektiv

Nilsson I, Nilsson-Lundmark E. (2013)

Vi har i ett antal studier analyserat ADHD-problematiken ur ett socioekonomiskt perspektiv med hjälp av kalkylmodeller vi utvecklat under cirka 30 års tid. Tidiga insatser kring barn med ADHD ger – vid sidan av de mänskliga vinsterna - utomordentligt höga samhällsvinster. Flera miljoner kronor per barn för perioden upp till 20 års ålder. Än tydligare blir det då man följer vuxna, i det här fallet med kriminell belastning. Samhällskostnaderna för uteblivna insatser för en grupp om 30 intagna kan under en 20 års period uppgå till mer än 800 Mkr. En insats mot denna målgrupp, av det slag som gjorts vid projektet vi följt på
Norrtäljeanstalten ger på 20 års sikt sannolikt en finansiell avkastning på mer än 250 Mkr eller 80 gånger insatsen. Tidiga, samordnade och evidensbaserade insatser för denna målgrupp är en social investering med utomordentligt hög lönsamhet. Ur ett strukturellt perspektiv kan frånvaron av kloka insatser enklast beskrivas som bristen på helhetssyn och långsiktighet då beslut tas kring denna målgrupp. Priset för detta är högt, mänskligt och ekonomiskt.

Adolescents’ perceptions of social support after the death of a parent

Gray, R. (1989)

Fifty individuals who had lost a parent through death during adolescence were interviewed. All deaths had occurred within five years and not less than six months before the study was initiated. Half the participants had been members of a peer-support group in their secondary school. When asked to describe the types of help received during their bereavement and to rate the usefulness of such help, most participants reported that a peer (40 percent) or the surviving parent 28 percent had been "most helpful," primarily through emotionally supportive behavior. The results indicated that the source of support had often influenced the style of support and among adolescents who had participated in a peer-support the participants' perceptions of its value. The perceptions of support had not.

Anknytning till arbetsmarknaden och ungas etablering

Bäckman O (2010)

Den utveckling mot ökad polarisering som visade
sig på många samhällsområden under 1990-talet
har under 2000-talet mattats av och stabiliserats.
Fler kan försörja sig på sitt arbete men den andel
som under längre tid står både utanför arbetsmarknaden
och utanför de sociala försäkringssystemen
är oförändrad (3–4 procent). Den långvariga fattigdomen
(som varar fem år eller längre) fortsatte
att minska för alla grupper. Även om inkomsterna
ökade för alla var dock inkomstökningarna större
bland höginkomsttagarna än bland dem med låga
inkomster. Därför har inkomstskillnaderna ökat.
Den etniska boendesegregationen i de tre storstadsregionerna
har stabiliserats efter att ha ökat under
hela 1990-talet, medan den ekonomiska segregationen
uppvisar en långsamt ökande trend över tid.
Sedan flera år tillbaka märks en tydlig koppling mellan
etnisk och ekonomisk segregation i storstadsregionerna.
Konjunktursvängningarna har stor betydelse
för utsatta grupper. I högkonjunktur ökar andelen
personer som kan försörja sig på sitt arbete i alla
befolkningsgrupper. Det gör att möjligheterna att
ta sig ur fattigdom och ekonomiskt biståndstagande
ökar. De som är speciellt konjunkturkänsliga
när det gäller nyetablering på arbetsmarknaden är
ungdomar som varken arbetar eller studerar under
övergångsfasen mellan skola och arbete samt nyanlända
invandrare.
Ungdomar, ensamstående mödrar samt invandrare,
främst de nyanlända och de från utomeuropeiska
länder, har hög risk för fattigdom och andra välfärdsproblem.
Välfärdsproblem kan uppträda tillsammans
och en vanlig kombination är ohälsa och
ekonomisk utsatthet. Allvarliga sjukdomar leder
ofta till försämrade ekonomiska villkor och ökad
risk för upplösning av parförhållanden.
Barn till papperslösa föräldrar har en otrygg tillvaro
och de som föds i Sverige folkbokförs inte och
kan inte identifieras genom person- eller samordningsnummer.
Detta begränsar bland annat möjligheterna
till att få kunskap om dessa barns situation
och hälsa.
I Social rapport 2010 presenteras ny kunskap
inom olika områden. För de allra flesta är fattigdom
inte bestående – hälften lämnar den redan
inom ett år. Den som en gång varit fattig löper
däremot stor risk att återigen hamna i fattigdom.
Risken att ärva sina föräldrars fattigdom är bara
något förhöjd i Sverige, däremot är det betydligt
vanligare att barn till höginkomsttagare blir välbärgade
som vuxna.
Utbildningen är en av de viktigaste faktorerna
för ungdomars framtida möjligheter. Ju tidigare
utbildningskedjan bryts desto sämre är framtidsutsikterna.
De grupper som har låga eller ofullständiga
betyg från grundskolan har kraftigt förhöjda
risker för framtida psykosociala problem.
Betygen är särskilt viktiga för utsatta barns framtidsutsikter.
Barn som växer upp i samhällets vård
eller i familjer med återkommande ekonomiskt
bistånd lämnar grundskolan med mycket lägre
betyg än andra barn och har också mycket höga
överrisker för framtida psykosociala problem.

Applying the ICF‐CY to identify children's everyday life situations: A step towards participation‐focused code sets

Adolfsson, M. (2013)

Adolfsson M. Applying the ICF-CY to identify children's everyday life situations: a step towards participation-focused code sets

With the long-term goal to create an interdisciplinary screening tool with code sets focusing on children's participation in everyday life situations (ELS), the purpose of the present study was to identify ELS for children 0–17 years. The views of professionals and parents in Sweden, South Africa and the USA were integrated based on ICF-CY1 linkages. The chapters Self-care and Major life areas seemed most obvious to include in ELS. At the 2nd ICF-CY level, 11 categories emerged as ELS, with Hygiene and Recreation as the most obvious. Two sets of ELS were identified for infants/preschoolers and school-aged children/adolescents. Professionals and parents agreed on ELS for the older age group. Findings suggest that ELS differ in context specificity depending on maturity and growing autonomy. The study has implications for the future screening tool that is intended to support children with disabilities in describing what matters most to them in intervention planning.

Approaches to needs assessment in children’s services

Ward, Harriet (2002)

Examining the assessment of need in children's services this book addresses the full spectrum of practice, policy and research developments in the field. The contributors include leading academics, policy makers and senior practitioners who generate a broad-based holistic approach to the assessment of children in need. They show how needs assessment in children's services can be used to tackle problems such as low achievement, mental ill-health and social exclusion at both individual and strategic levels.

Approaches to the Assessment of Need in Children's Services will enable service managers and practitioners to respond effectively to the increasing pressure to monitor outcomes and effectiveness in child care work, and to improve and coordinate children's welfare service provision at individual and community levels and provides an indispensable overview and analysis for anyone working or studying in child welfare and social care

Arbetsglädje bland anställda anhörigvårdare

Furåker B, Mossberg A-B (1997)

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.

Att ge syskon utrymme

Granat, Tina, Nordgren, Ingrid & Rein, George (2006)

Rapport från barn och ungdomshabiliteringen

Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp – ett utvecklingsprojekt under åren 2000-2009

Ekenberg Lilly (2010)

Syftet med denna satsning på anhörigstöd var att pröva och utveckla en modell 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 anhöriges 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 Länsenhetens 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 tillsammans 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 genomfördes 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 tillfällen: 1) vid start av anhöriggrupp 2) vid kursavslut och 3) vid uppföljning cirka 6 månader efter kursavslut. Deltagarna gavs utrymme till att direkt efter 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 Luleågrupper 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 avslappning 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 upplevelse av anhörigsituationen medan föräldrarnas skattningar visade en svag trend mot en något bättre upplevelse av sin anhörigsituation. Kommentarerna 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 Mötet/samtalet som "kanske som det mest underskattade anhörigstödet" (Winqvist, 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 större skala.

Barns upplevelser när föräldrars missbruk upphört “Alltså det är svårt att må bra igen”

Alexanderson Karin, Näsman Elisabet (2017)

Artikeln bygger på intervjuer med 15 barn till föräldrar med missbruksproblem.
Syfte: Att bidra till fördjupad förståelse av barns situation, när en förälders missbruk upphört.
Metod: En explorativ intervjustudie med barndomssociologi och symbolisk interaktionism som teoriram.
Resultat: Att missbruket upphört ger barn utrymme att känna efter hur de mår, att reflektera över missbrukets påverkan på deras hälsa och personlighet och att försöka förändra sig och sitt liv. Deras behov av bearbetning kan kvarstå lång tid. Det kan ta tid och vara svårt att bygga upp relationen till föräldern. Barn kan känna omsorgsansvar men också misstro och oro för återfall. Tonåringen kan dock se en möjlighet att gå vidare med sitt eget liv. Om missbruket bara upphör för en av två föräldrar med missbruksproblem är barn fortfarande berörda av missbruk.
Konklusion: Barns behov av bearbetning i relation till föräldrarna kan både ta och kvarstå lång tid oavsett om barnet bor med föräldern eller inte. Barnen kan både behöva hjälp för egen del och i relation till föräldern. Det ska vara påbjudet att professionella arbetar med ett familjeperspektiv, oavsett organisatoriska uppdelningar och oavsett om förälder och barn bor ihop eller ej. Det kräver strukturer, rutiner och resurser för samverkan över organisatoriska gränser.

Behavioral family counseling for substance abuse: a treatment development pilot study

O'Farrell TJ, Murphy M, Alter J, Fals-Stewart W. (2010)

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.

Being the next of kin of an adult person with muscular dystrophy

Boström, K., Ahlström, G., & Sunvisson, H. (2006)

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

Bereaved adolescents’ evaluations of the helpfulness of support-intended statements: associations with person centeredness and demographic, personality, and contextual factors

Servaty-Seib, H.L., & Burleson, B.R. (2007)

Currently, there is a lack of reliable methods for assessing how bereaved adolescents perceive the informal support they receive. This study provides methodological refinements in, and a theoretical grounding for, a recently developed measure designed to distinguish support efforts that bereaved adolescents find helpful versus harmful. Participants (114 bereaved adolescents) completed the Support Intended Statement Survey (SISS), which assessed the perceived helpfulness of 14 strategies intended to comfort the bereaved. These 14 strategies were coded for the degree of person centeredness they manifested. Level of strategy person centeredness was strongly correlated with perceived strategy helpfulness. Reported helpfulness of the strategies varied substantially as a function of participants' general levels of perceived support availability, but varied less as a function of demographic and contextual factors.

Bereavement support for children

Auman, M.J. (2007)

The death of a parent is one of the most significant and stressful events children can encounter. Surviving children may experience psychiatric problems and social dysfunction during their childhood and possibly throughout their adult lives. Children surviving a sibling's death may develop behavioral problems, because no one can fill the emptiness that remains in their lives, especially if their relationship was close. It is vital to recognize the trauma experienced by children who have suffered the loss of a loved one. Adults need to know when a grieving child needs help. Literature supports the need for education and counseling for grieving children. School nurses can be instrumental in meeting these needs for school-age children by performing early, comprehensive assessments, educating school administration regarding the benefits of bereavement support, initiating appropriate referrals, and providing bereavement support.

Bibliotherapy for youth and adolescents – school-based application and research

McCulliss, D. & Chamberlain, D. (2013)

Bibliotherapy in the elementary, middle, and high-school classroom is used to foster healthy social and emotional growth in children and young adults to develop insight, a deeper understanding of self, solutions to personal problems, development of life skills, or enhanced self-image. The focus of this article is on how bibliotherapy can be used to address students' specific issues ranging from mild behavioral issues to physical and psychosocial conditions. Based on an extended review of the literature on bibliotherapy, this article may serve as a guide to readers interested in developing a bibliotherapy program for youth and adolescents. Recommendations for research are also noted.

Bibliotherapy: using books to help bereaved children

Berns, C.F. (2003)

This article explores bibliotherapy as a process in which death-related literature is used to help bereaved children cope with experiences of death and loss. For that exploration, this article defines bibliotherapy, offers an argument in support of its value, and suggests how a potential bibliotherapist might begin. Suggestions are made for selecting and using stories in bibliotherapy. Since most bibliotherapy is actually used as an optional tool in bereavement support groups, guidelines are offered as to how it might best be implemented in that context. Much of this discussion is also relevant to the use of bibliotherapy on a one-to-one basis involving a particular child and an adult guide. Examples of stories and books for children that I have used in bibliotherapy are mentioned throughout this article.

Delaktighetsmodellen – en väg mot empowerment

Gullacksen, Ann-Christine (2010)

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

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

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

Deliberate self-harm behaviour in Swedish adolescent girls reports from public assessment and treatment agencies

Holmqvist R, Carlberg M, Hellgren L. (2008)

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

Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics

Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B. (2003)

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

Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers

Holm M, Carlander I, Fürst CJ, Wengström Y, Årestedt K, Öhlen J, Henriksson A (2015)

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.

Delivery styles and formats for different stroke information topics: patient and carer preferences

Eames S, Hoffmann T, Worrall L, Read S. (2011)

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

Demens - Anhörig På Liv och Död

Öhman Camilla (2020)

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.

Dementia across cultural borders: Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home

Kiwi, Mahin (2018)

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.

Dementia caregiver intervention research: in search of clinical significance

Schulz R, O'Brien A, Czaja S, Ory M, Norris R, Martire LM, et al. (2002)

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

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson