Bibliotek
Sökresultat
Din sökning på resulterade i 8018 träffar
'It has been a good growing experience for me': Growth experiences among African American youth coping with parental cancer
This qualitative focus group study describes posttraumatic growth experiences of African American adolescents currently coping with parental breast cancer. Twelve adolescents participated in three focus groups assessing their experiences with parental cancer. Spontaneous accounts of posttraumatic growth were reported by all participants. A content analysis revealed reports in four of the five domains of posttraumatic growth identified by Tedeschi and Calhoun (1996) which included: greater appreciation for life, enhanced interpersonal relationships, increased sense of personal strengths, and changed priorities. An additional domain, change in health behaviors and attitudes, also emerged. These findings add important knowledge to the developing field of research in posttraumatic growth in populations where available research is scarce, especially among adolescents and racial minorities.
Kartläggning av föräldrastödsprogram
KBT inom barn och ungdomspsykiatrin
Kognitiv beteendeterapi (KBT) är en alltmer efterfrågad behandlingsform. Boken beskriver hur KBT kan tillämpas vid en rad olika psykiatriska diagnoser: separationsångest och paniksyndrom, generaliserat ångestsyndrom, specifi ka fobier, social fobi, tvångssyndrom, depression, beteendestörning och trotssyndrom, ADHD, ätstörningar, tics och Tourettes syndrom samt autism och självskadande beteende. Tillstånden beskrivs utifrån gällande diagnostiska kriterier, därefter visas hur KBT-modellen och beteendeanalysen kan se ut för respektive tillstånd och hur behandlingen kan läggas upp. Till de olika diagnoserna finns kliniska fallvinjetter. Boken avslutas med en översikt av det empiriska stödet för KBT vid de olika psykiska störningarna hos barn och ungdomar. Boken är avsedd som kursbok för all grundutbildning inom psykoterapi med KBT-inriktning. Den är också lämpad för professionellt verksamma behandlare.
Knowledge of Alzheimer's disease, feelings of shame, and awareness of services among Korean American elders
Kompletterande anknytningsperson på förskolan
Barn till föräldrar med psykisk ohälsa är en eftersatt grupp. Syfet med denna studie är att studera pedagogers utveckling som kompletterande anknytningsperson i relation till en tre årig fortbildning.Fortbildnigen ägde rum samtidigt som pedagogerna arbetade och innehöll teorier om barns utveckling, nämligen anknytningsteori, Affektteori samt Sterns teori om barns självutveckling.En narrativ metod användes och narrativen analyserades i relation till fortbildningens innehåll, teorier om pedagogers lärande och teorier om tidig utveckling.
Resultatet diskuteras utifrån pedagogers arbete med utsatta barn i förskolan, lärarutbildningens innehåll och fortbildning samt samverkan.
Leisure and distress in caregivers for elderly patients
Leisure and distress in caregivers for elderly patients
Lek med mig
Häftet riktar sig särskilt till den som har ett barn med synskada, men de innehåller tips och idéer som fungerar för alla barn med behov av extra stimulering de första åren. Se även Lek mera med mig.
Lek mera med mig
Häftet riktar sig särskilt till den som har ett barn med synskada, men de innehåller tips och idéer som fungerar för alla barn med behov av extra stimulering de första åren. Se även Lek med mig.
Life after a stroke event. With special reference to aspects on prognosis, health and municipality care utilization, and life satisfaction among patients and their informal caregivers.
Stroke medför en plötslig och påtaglig förändring av livet för den drabbade och för anhöriga. Efter sjukhusvistelsen för-sätts de i en ny livssituation och ställs in-för många nya problem. Eftersom antalet personer som lever efter genomgången stroke ökar, på grund av förbättrad över-levnad, medför det ökade insatser inom vårdens olika grenar, främst kommunala insatser men också ökade krav och för-väntningar på att anhöriga ställer upp som vårdare.Syftet var att öka kunskapen om stroke-patienters och deras anhörigas situation efter utskrivning från sjukhus. Studie-populationen bestod av 390 konsekutiva strokepatienter, 65 år eller äldre, samt anhöriga som gett hjälp och stöd åt pa-tienten.Den prognostiska förmågan hos sjukhus-personal, avseende patientens framtida hälsotillstånd, hjälpbehov samt boende-form, var signifikant bättre än slumpen. Personalen tenderade att vara alltför optimistisk i sina bedömningar. De fakto-rer som påverkade prognosens korrekthet var aktivitetsgrad och ensamboende före insjuknandet samt påverkad kognitiv för-måga och hjälpbehov vid utskrivningen. God uppfattning om prognosen är viktig såväl för patienter och anhöriga som för vårdpersonalen, bland annat i samband med utskrivningsplanering från sjukhuset.Risken för återinsjuknande och död mins-kade kraftigt från cirka 14% tidigt i efter-förloppet till en stabil nivå på 2-5% efter ett halvår. Cirka 2-3% av patienterna fick sjukhusvård vid ett givet tillfälle under det första året. Motsvarande vårdutnyttjande inom primärvården var 10% och i den kommunala äldreomsorgen 65%. Den kommunala vården svarade således för den största vårdinsatsen efter utskriv-ningen.De vanligaste intervjubaserade hälso-problemen under det första året gällde perception, rörlighet och sömn, medan de vanligaste journalbaserade problemen var smärta, inkontinens samt problem med andning och cirkulation. Kognitions-, rörlighets- och trötthetsproblem tende-rade att samvariera, vilket kan utnyttjas för att identifiera svårfångade problem. Nästan samtliga patienter rapporterade problem någon gång under året men få vid ett givet tillfälle. De faktorer som bestämde storleken av anhörigas insatser var patientens kogni-tiva förmåga, släktskap, given kommunal äldrevård, samt patientens kön. De an-hörigas upplevda börda ökade med den givna hjälpinsatsen, om kommunal äldre-vård getts, släktskap, låg kognitiv förmå-ga och patientens ålder. Både informell och formell vård ökade. Slutligen fanns det en påtaglig parallellitet avseende ång-est och depression samt livskvalitet, som innebar att ju mer ansträngd patientens situation var, desto värre var situationen för den anhörige
Lite lagom ovanlig: om att vara förälder till barn med funktionsnedsättning
Boken samlar de kåserier och krönikor som RBU Stockholm publicerat i medlemstidningen Utsikt. Föräldrar till barn med funktionsnedsättningar kommer att känna igen sig i bokens kåserier och krönikor. Man påminns om sina egna upplevelser, skrattar med åt absurda situationer och känner ilskan mot tjänstemän och en oförstående omgivning. Svar på tal levereras!
Nu har vi nog hittat den rätta hemtjänsten…”En intervjustudie om äldre som har bytt hemtjänst
Närstående i den psykiatriska vården: en kvalitativ studie om erfarenheter av närståendes delaktighet.
The changes in family burden and participation in care of relatives to both voluntarily and compulsorily admitted patients were investigated as part of a longitudinal study of the quality of the mental health services in a Swedish county performed between 1986 and 1997. The relationship between the relative's mental health and family burden, participation in care and need of own support was also investigated. The results showed similar and high levels of burden and a non-sufficient participation in care in both periods investigated despite the ongoing changes in the delivery of psychiatric services and a change in the compulsory legislation in Sweden during the period. More relatives experienced an own need of care and support from the psychiatric services in the 1997 investigation. Relatives who experienced mental health problems of their own more often experienced other forms of burden, experienced less participation in the patient's treatment and also more often had own needs of care and support. It is concluded that interventions in families where relatives experience mental health problems will be useful, since a well-functioning network around the mentally ill person has shown to reduce relapse.
Older People's Family Contacts and Long-term Care Expenditure in OECD Countries: A Comparative Approach Using Qualitative Comparative Analysis
Optimism, social support, and well-being in mothers of children with autism spectrum disorder
This study used structural equation modeling to examine the relationship between multiple sources of social support (e.g., partner, family, and friends), optimism, and well-being among mothers of children with ASD. Social support was examined as a mediator and moderator of the optimism-maternal well-being relationship. Moreover, the role of optimism as a mediator of the social support-maternal well-being relationship was also evaluated. Results revealed that family support was associated with increased optimism that, in turn, predicted higher levels of positive maternal outcomes and lower levels of negative maternal outcomes. In addition, partner and friend support were directly associated with maternal outcomes. Implications for the development of interventions directed at increasing the quality of social support networks are discussed. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Perspectives from the frontlines: palliative care providers' expectations of Canada's compassionate care benefit programme
Perspectives from the frontlines: palliative care providers' expectations of Canada's compassionate care benefit programme.
Perspektiv på en skola för alla.
Perspektiv på en skola för alla
Frågan om en skola för alla eller inkluderande undervisning väcker många känslor och tankar. Vad betyder egentligen en skola för alla och hur förhåller vi oss till den? Är inklusion bara ett politiskt, socialt och ideologiskt mål eller betyder det någonting mer? I denna reviderade upplaga presenterar författarna nya forskningsrön om inkludering.
Pilot Controlled Trial of Mindfulness Meditation and Education for Dementia Caregivers
Poly-Victimization in a National Sample of Children and Youth
Abstract
BACKGROUND:
Most studies of children's exposure to violence focus on separate, relatively narrow categories of victimization (such as sexual abuse, physical maltreatment, or bullying), paying less attention to exposure to multiple forms of victimization.
PURPOSE:
This study documents children's lifetime exposure to multiple victimization types (i.e., "poly-victimization") and examines the association between poly-victimization and extent of trauma symptomatology.
METHODS:
Analyses were based on telephone interviews conducted between January 2008 and May 2008 with a nationally representative sample of 4053 children aged 2-17 years and their caregivers.
RESULTS:
Exposure to multiple forms of victimization was common. Almost 66% of the sample was exposed to more than one type of victimization, 30% experienced five or more types, and 10% experienced 11 or more different forms of victimization in their lifetimes. Poly-victims comprise a substantial portion of the children who would be identified by screening for an individual victimization type, such as sexual assault or witnessing parental violence. Poly-victimization is more highly related to trauma symptoms than experiencing repeated victimizations of a single type and explains a large part of the associations between individual forms of victimization and symptom levels.
CONCLUSIONS:
Studies focusing on single forms of victimization are likely to underestimate the full burden of victimization that children experience and to incorrectly specify the risk profiles of victims. Research, clinical practice, and intervention strategies are likely to improve with more comprehensive assessments of victimization exposure.
Predicting Posttraumatic Stress Symptoms in Children Following Hurricane Katrina:A Prospective Analysis of the Effect of Parental Distress and Parenting Practices
Research exhibits a robust relation between child hurricane exposure, parent distress, and child posttraumatic stress disorder (PTSD). This study explored parenting practices that could further explicate this association. Participants were 381 mothers and their children exposed to Hurricane Katrina. It was hypothesized that 3–7 months (T1) and 14–17 months (T2) post-Katrina: (a) hurricane exposure would predict child PTSD symptoms after controlling for history of violence exposure and (b) hurricane exposure would predict parent distress and negative parenting practices, which, in turn, would predict increased child PTSD symptoms. Hypotheses were partially supported. Hurricane exposure directly predicted child PTSD at T1 and indirectly at T2. Additionally, several significant paths emerged from hurricane exposure to parent distress and parenting practices, which were predictive of child PTSD.
Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia
BACKGROUND/AIMS: Psychosocial intervention has shown positive effects on the
caregivers' burden and satisfaction. The aims of this study were to describe the
cost and cost-effectiveness of such an intervention.
METHODS: We analyzed resource use and costs of formal care for 308 persons with
dementia and their caregivers' health-related quality of life (HRQoL).
RESULTS: The costs of home help services were lower in the subgroup of spouse
caregivers in the intervention group and the cost of nursing home placement was
lower in the intervention group. While the person with dementia lived at home,
caregivers in the intervention group reported a higher HRQoL (p < 0.01). After
the person with dementia had moved to a nursing home, spouses in the control
group had a lower HRQoL (p < 0.001).
CONCLUSION: The result can be interpreted as a positive effect of the
intervention focusing on the identified specific needs of the family caregivers.
I kroppen min : vägsjäl
"Vår berättelse närmar sig sitt slut. Och vår figur klamrar sig fast på vrakets krutdurk på det öppna havet. Molnen hopar sig. Från och med nu blir allt han skriver korta fragment som han ristar in i tunnans trä."
Efter den hyllade debutboken I kroppen min kommer nu Kristian Gidlunds avslutande texter från bloggen med samma namn. Texterna återspeglar Kristians tankar och känslor under de sista sju månaderna av hans liv. Boken innehåller också Emma Svenssons bilder från fotoutställningen om Kristian Gidlund.
Han hade ett sjömanshjärta i sitt bröst. Han sökte äventyret. Han älskade livet. Kristian Gidlund, författaren, journalisten och musikern avled den 17 september 2013. Han blev 29 år gammal.
"Kristian Gidlund gjorde verkligen skillnad, helt på egen hand. Ingen som hörde hans röst, precisionen och modet i varenda formulering, kunde låta bli att stanna upp, lyssna och långsamt förändras. Han lärde oss att dö men också att leva." Åsa Beckman Dagens Nyheter
"När jag läste hans betraktelser ville jag bara dansa i regnet, bada i en ljummen sjö, älska, gråta, skratta, känna, och rida rätt ut i skogen." Sanna Lundell Aftonbladet
"Hans lyriska formuleringar blir till trollformler som genererar liv bara man läser dem med tillräcklig intensitet. Naturligtvis är det oerhört tragiskt och tårdrypande. Men här finns också värme och humor som på samma gång balanserar upp tragiken och förstärker den."Norrköpings Tidningar
"Han var just så varm, just så orädd, just så klok, just så stark, just så vacker - och omöjlig att inte älska... Den svidande skönheten i de texter han med sån poetisk stringens, och sån osentimental men likafullt hjärtskärande öppenhjärtighet, formulerade." Per Bjurman Aftonbladet
"Styrkan i Gidlunds eviga berättande var inte att döden lurade runt hörnet, utan att hans texter genomsyrades av en oerhörd livslust. Han påminde ständigt om att han levt ett rikt liv. "Glöm aldrig det", skrev han i den poetiskt tecknade boken." Sydsvenska Dagbladet
"Sällan har någons skrivande varit mer meningsfullt än Kristian Gidlunds." Östgöta Correspondenten
Prevalence and characteristics of child physical abuse in Sweden - findings from a population-based youth survey
Abstract
AIM:
To examine prevalence rates of child physical abuse perpetrated by a parent/caretaker, abuse characteristics and the extent of disclosures.
METHODS:
A population-based survey was carried out in 2008 amongst all the pupils in three different grades (n = 8494) in schools in Södermanland County, Sweden. The pupils were asked about their exposure to violence and their experiences of parental intimate-partner violence. Data were analysed with bi- and multivariate models and a comparison between means of accumulating risk factors between three groups were performed.
RESULTS:
A total of 15.2% of the children reported that they had been hit. There were strong associations between abuse and risk factors and there was a dose-response relationship between risks and reported abuse. It was shown that children who reported parental intimate-partner violence were at a considerably higher risk for abuse than other children and that only 7% of the children exposed to violence had disclosed this to authorities.
CONCLUSION:
Even though child abuse in Sweden has decreased markedly during the last 40 years, violence against children is still a considerable problem. It is a challenge to develop methods of assessment and interventions that will ensure that the violence and its underlying causes are directly addressed.
Idrott och funktionsnedsättning ur ett tillgänglighetsperspektiv. Lika värde-konferensen 2014 Forum för specialpedagogik
Impact of fear of falling for Patients and Caregivers. Perceptions before and after Participation in Vestibular and Balance Rehabilitation Therapy
The purpose of this study was to investigate the impact of fear of falling (FoF) on older patients with dizziness history and their caregivers to better determine holistic needs when developing a patient-family centered approach to falling risk reduction. A mixed-method design incorporating a phenomenological qualitative approach to explore the impact of fear of falling in fourteen patients as well as a family member or spouse of each patient. Quantitative analysis was used to further interpret results of interviews conducted before and after participation in a vestibular and balance rehabilitation program designed to reduce falling risk and improve balance confidence. Qualitative analysis of participant interviews pre and post vestibular rehabilitation revealed lifestyle changes for both participants and family caregivers due to FoF and need for reducing falling concerns. Age of the patient showed statistically significant differences in levels of balance confidence with younger subjects (≤65 years) showing more concerns about the consequences of falling even after rehabilitation than older subjects (>65 years). The study highlights the impact of FoF on participation and activity levels of patients and family caregivers as well as the need to thoroughly evaluate falling fears to achieve a holistic rehabilitation outcome.
Program för att förebygga psykisk ohälsa hos barn : En systematisk litteraturöversikt
Det är angeläget att finna metoder för att förebygga psykisk ohälsa hos barn. Det finns tecken på att psykisk ohälsa hos barn kan ha ökat under de senaste decennierna och strukturerade insatser för att komma till rätta med problemen blir allt vanligare såväl inom kommunal verksamhet som inom hälso- och sjukvård. Interventionen utgörs av så kallade program som är standardiserade och finns beskrivna i manual eller motsvarande. Här sammanfattas det vetenskapliga underlaget för två typer av program: dels de som främst syftar till att förebygga utagerande beteenden hos barn och ungdomar, dels de som i första hand syftar till att förebygga inåtvända problem som ångest, depression och självskadebeteende. Program som har en allmänt hälsobefrämjande effekt, t ex för att förebygga drogmissbruk och våldshandlingar ingår följaktligen inte. Programmen är avsedda att ha effekt, inte bara direkt efter att programmet har avslutats utan även i framtiden. Rapporten har tagits fram på förfrågan av Kungliga Vetenskapsakademien och UPP-centrum (Utvecklingscentrum för barns psykiska hälsa) vid Socialstyrelsen. Båda har efterfrågat en systematisk litteraturöversikt för att klarlägga nyttan med att använda program för att förebygga psykisk ohälsa hos barn. Slutsatser:- Av 33 bedömda standardiserade och strukturerade insatser (program) som syftar till att förebygga psykisk ohälsa hos barn har sju ett begränsat vetenskapligt stöd i den internationella litteraturen. Det är föräldrastödsprogrammen Incredible Years och Triple P, familjestödsprogrammet Family Check-Up samt skolprogrammen Good Behavior Game, Coping Power, Coping with Stress och FRIENDS. Effekterna är med få undantag små. Studierna är utförda i andra länder. Eftersom effekterna sannolikt varierar med sociala och kulturella sammanhang är det oklart i vilken utsträckning som programmen kan överföras till Sverige med bibehållen effekt. Programmen kan också behöva anpassas så att de överensstämmer med svenska värderingar och syn på barns rätt.- I Sverige används ett hundratal olika program för att förebygga psykisk ohälsa hos barn, i huvudsak av utagerande typ. Inget av dem har utvärderats i Sverige i randomiserade studier med minst sex månaders uppföljning. Programmen De otroliga åren (översatt från Incredible Years), Triple P och Family Check-Up har enligt internationella studier begränsat vetenskapligt stöd för förebyggande effekt. Programmen KOMET, COPE, SET, StegVis, Beardslees familjeintervention, Connect och DISA har undersökts i minst en kontrollerad studie vardera men har inte tillräckligt vetenskapligt stöd för förebyggande effekt. Övriga program som används i Sverige är inte vetenskapligt utprövade som preventionsprogram.- Program som bygger på att ungdomar med utagerande problem träffas i grupp kan öka risken för normbrytande beteenden. Andra negativa effekter för såväl program för utagerande som för inåtvända problem är tänkbara men ofullständigt belysta.- Det behövs randomiserade studier som undersöker om de program som används har förebyggande effekt i svenska populationer och inte medför risker. Det behövs också hälsoekonomiska studier som undersöker om programmen är kostnadseffektiva.
Psychosocial factors and caregivers' distress: effects of familism and dysfunctional thoughts
Qualitative study on the impact of falling in frail older persons and family caregivers: Foundations for an intervention to prevent falls
Abstract
Objectives: The primary aim of this study was to explore the impact of falling for frail community-dwelling older persons with and without cognitive impairments who have experienced a recent fall and their primary family caregivers. The secondary aim was to define components for a future fall prevention programme.
Methods: Grounded theory interview study, with 10 patients (three cognitively unimpaired, four with mild cognitive impairment and three with dementia) and 10 caregivers.
Results: All patients described a fear of falling and social withdrawal. Caregivers reported a fear of their care recipient (CR) falling. Most patients were unable to name a cause for the falls. Patients rejected the ideas that falling is preventable and that the fear of falling can be reduced. Some caregivers rated the consequences of their CRs' cognitive problems as more burdensome than their falls and believed that a prevention programme would not be useful because of the CRs' cognitive impairment, physical problems, age and personalities.
Conclusion: Falling has major physical and emotional consequences for patients and caregivers. A fall prevention programme should focus on reducing the consequences of falling and on promoting self-efficacy and activity. The causes of falls should be discussed. The programme should include dyads of patients and caregivers because caregivers are highly involved and also suffer from anxiety. Before beginning such a programme, providers should transform negative expectations about the programme into positive ones. Finally, caregivers must learn how to deal with the consequences of their CRs' falling as well as their cognitive impairment.
Quality of life of patients with Alzheimer's disease: differential perceptions between spouse and adult child caregivers
Randomized Controlled Trial of a Cognitive–Behavioral Therapy for At-risk Korean Male Adolescents
This study examined the effects of cognitive behavioral therapy (CBT) aimed at enhancing the resilience of high-risk adolescents with alcohol-dependent parents in Suwon, South Korea. The study used a randomized control group pretest and posttest design. The experimental group participated in 10 sessions of CBT, and the scores on resilience increased significantly after the intervention, whereas the scores of self-concept and depression did not change. In the control group, none of the scores of outcome variables changed significantly after the intervention period. The results indicate that the developed CBT program might be effective for improving the resilience of adolescents with alcohol-dependent parents.
Relationship Between Methods of Coping, Social Support and Receipt of Preventive Care Procedures by Primary Grandmother Caregivers
Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative care
Responding to symptoms of Alzheimer's disease: husbands, wives, and the gendered dynamics of recognition and disclosure
Ring anhöriga med bildtelefon
Samarbeid i Laerings- og mestringssenteret – brukermedvirkning og makt
Samtal pågår
Samtalet med känslomässig intelligens. En handledning i konsten att samtala
Six-year follow-up of a preventive intervention for parentally bereaved youths
Abstract
OBJECTIVE:
To evaluate the efficacy of the Family Bereavement Program (FBP) to prevent mental health problems in parentally bereaved youths and their parents 6 years later.
DESIGN:
Randomized controlled trial.
SETTING:
Arizona State University Prevention Research Center from November 2002 to July 2005.
PARTICIPANTS:
Two hundred eighteen bereaved youths (89.34% of 244 enrolled in the trial 6 years earlier) and 113 spousally bereaved parents.
INTERVENTIONS:
The FBP includes 12 group sessions for caregivers and youths; the literature control (LC) condition includes bereavement books for youths and caregivers.
MAIN OUTCOME MEASURES:
Comparisons of youths in the FBP and LC on a measure of mental disorder diagnosis, 5 measures of mental health problems, and 4 measures of competent functioning; and comparisons of spousally bereaved parents on 2 measures of mental health problems.
RESULTS:
Youths in the FBP as compared with those in the LC had significantly lower externalizing problems as reported by caregivers and youths (adjusted mean, -0.06 vs 0.13, respectively; P = .02) and on teacher reports of externalizing problems (adjusted mean, 52.69 vs 56.27, respectively; P = .001) and internalizing problems (adjusted mean, 47.29 vs 56.27, respectively; P = .002), and they had higher self-esteem (adjusted mean, 33.93 vs 31.91, respectively; P = .005). Parents in the FBP had lower depression scores than those in the LC (adjusted mean, 5.48 vs 7.83, respectively; P = .04). A significant moderated program effect indicated that for youths with lower baseline problems, the rate of diagnosed mental disorder was lower for those in the FBP than in the LC.
CONCLUSION:
This study demonstrates efficacy of the FBP to reduce mental health problems of bereaved youths and their parents 6 years later.
Skilda världar: specialisering eller integration i socialtjänstens individ- och familjeomsorg.
Social barnavård ur ett välfärdsperspektiv
Social Insurance in Figures 2009
Social rapport 2010
Rapporten ger en översikt över vilka de sociala problemen är, varför de uppstår och hur de förändras över tid. Den belyser och analyserar den långsiktiga utvecklingen med tyngdpunkt på det senaste decenniet. Särskilt uppmärksammas de grupper i samhället som är mest eftersatta i ekonomisk och social bemärkelse.
Social rapport 2010
Rapporten ger en översikt över vilka de sociala problemen är, varför de uppstår och hur de förändras över tid. Den belyser och analyserar den långsiktiga utvecklingen med tyngdpunkt på det senaste decenniet. Särskilt uppmärksammas de grupper i samhället som är mest eftersatta i ekonomisk och social bemärkelse.
Structural Ecosystems Therapy for recovering HIV-positive women: Child, mother and parenting outcomes
This study presents results of a subgroup analysis from a randomized trial to examine whether Structural Ecosystems Therapy (SET), a family intervention intended to improve medication adherence and reduce drug relapse of HIV-seropositive (HIV+) women recovering from drug abuse, provided benefits for families with children. Data from 42 children and 25 mothers were analyzed at baseline, and 4, 8, and 12 months post-baseline. Results of longitudinal Generalized Estimating Equations analyses suggested that SET was more efficacious than the Health Group (HG) control condition in decreasing children's internalizing and externalizing problems and reducing mothers' psychological distress and drug relapse. Children in SET reported improvements in positive parenting as compared to the children in HG, but there were no differences in mother-reported positive parenting, or parental involvement as reported by either the children or mothers. These findings suggest that family interventions such as SET may be beneficial for mothers and children. An adaptation of SET specifically for families with children could further enhance benefits and improve acceptability and cost-effectiveness.
Structural Ecosystems Therapy for recovering HIV-positive women: child, mother, and parenting outcomes
This study presents results of a subgroup analysis from a randomized trial to examine whether Structural Ecosystems Therapy (SET), a family intervention intended to improve medication adherence and reduce drug relapse of HIV-seropositive (HIV+) women recovering from drug abuse, provided benefits for families with children. Data from 42 children and 25 mothers were analyzed at baseline, and 4, 8, and 12 months post-baseline. Results of longitudinal Generalized Estimating Equations analyses suggested that SET was more efficacious than the Health Group (HG) control condition in decreasing children's internalizing and externalizing problems and reducing mothers' psychological distress and drug relapse. Children in SET reported improvements in positive parenting as compared to the children in HG, but there were no differences in mother-reported positive parenting, or parental involvement as reported by either the children or mothers. These findings suggest that family interventions such as SET may be beneficial for mothers and children. An adaptation of SET specifically for families with children could further enhance benefits and improve acceptability and cost-effectiveness.
Study of two graphic symbol-teaching methods for individuals with physical disabilities and additional learning difficulties
The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.
Study of two graphic symbol-teaching methods for individuals with physical disabilities and additional learning difficulties
The primary purpose of this study was to establish whether contrasting teaching methods had an effect on performance accuracy in the recall of graphic symbols. The secondary purpose was to establish whether the iconicity of symbols had an effect on performance accuracy. A direct symbol-teaching method and a contextual symbol-teaching method were investigated using a total of 72 Picture Communication Symbols (PCSs; Johnson, 1985). Fourteen children with physical disabilities and additional learning difficulties took part in the study. Ten participants had little or no functional speech. The results showed that, averaging across all other factors, the direct-teaching method produced better results than the contextual-teaching method and that performance accuracy was greater with transparent symbols. Results also showed a significant interaction between the direct-teaching method and translucent/opaque symbols. Further analysis of the descriptive data suggests that age, rather than educational or language ability, was a significant factor. Implications for augmentative and alternative communication (AAC) practices are discussed.
Stöd för anhöriga till personer med demenssjukdom. Fokusrapport.
Hur är det att vara anhörigtill en person med demenssjukdom? Vilket stöd ges från sam-hällets sida och överensstämmer det med de verkliga behoven? Hur upplever vårdpersonaloch biståndshandläggare det är att stödja anhöriga? Var finns problemen, och hur ska vigöra för att lösa dem? Det är några av de frågor vi har ställt och försöker ge svar på i dennafokusrapport. Demens beskrivs ofta som de anhörigas sjukdomeftersom de förändringar som följer medsjukdomsutvecklingen starkt påverkar livskvaliteten även för de anhöriga. De anhöriga, somofta själva är äldre, har en avgörande roll när det gäller vården av personer med demens-sjukdom.1Invanda mönster och maktförhållanden förändras i en familj när någon insjuknari demenssjukdom.2Att vårda en närstående är vanligt i åldrarna 75 till 84 år, ungefär likamånga män som kvinnor.3Att vara anhörig till en person med demenssjukdom påverkar hälsa, social situation, eko-nomi, livskvalitet och levnadsvillkor i hög grad.Ett flertal studier visar att anhöriga somvårdar en person med Alzheimersjukdom löper en ökad risk för depression4. Data från stu-dier visade att inflyttningen på särskilt boende kan framflyttas med sex månader om anhö-riga erbjuds stöd och hjälp när den demenssjuka fortfarande bor hemma. Välinformeradeoch kunniga anhöriga är en tillgång för både landsting och kommun. Från den 1 juli 2009 är kommunens skyldighet att ge stöd till anhöriga förtydligad genomen ändring i socialtjänstlagen. Kommunal hälso- och sjukvård och socialtjänst ska er-bjuda ett individuellt anpassat stöd till anhöriga, men också arbeta för att se, respektera ochsamarbeta med anhöriga.6Landstinget har ingen uttalad skyldighet att stödja anhöriga men har i uppdrag att svara förförebyggande hälso- och sjukvård enligt 2 c § Hälso- och sjukvårdslagen. Det innebärbland annat att identifiera personer eller grupper som riskerar att drabbas av ohälsa. Hälso-och sjukvården har en otydlig roll i dagens anhörigstöd. Sedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närbehov finns ska en gemensam individuell plan upprättas för personer med psykiska funk-tionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga.De behov som anhöriga till personer med demenssjukdom har, liknar i stor utsträckning be-hoven som andra anhöriga har, det vill säga där det handlar om andra svåra kroniska sjuk-domar eller psykiska funktionshinder. Nästan oavsett vilka sjukdomstillstånd det handlar om innebär vardagen som anhörig ett stort antal utmaningar där samhället måste erbjudastöd och hjälp. I Socialstyrelsens "Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010"belyses hela vårdkedjan - över huvudmannaskapsgränserna. I riktlinjerna framgår hur deolika aktörerna bör strukturera sitt arbete för att kunna säkra god och jämförbar vård förpersoner med demens. I de nationella riktlinjerna lyfts begreppet personcentrerad omvårdnadfram, det vill sägaatt omhändertagandet av personer med demenssjukdom i möjligaste mån ska individanpas-sas. Flertalet anhöriga anser att personal inom vård och omsorg inte tar tillvara anhörigaskunskap om deras närstående. För att lyckas med det krävs att företrädare från kommuneroch landsting betraktar anhöriga som samarbetspartners. På så sätt ökas självkänslanhos anhöriga och främjar deras självständighet. Det bidrar också till att man inom kommunoch landsting får en korrekt bild av vad som behövs i ett fungerande anhörigstöd.Olika typer av tekniska hjälpmedel kan även vara till stor hjälp för den anhöriga och bevaraden demenssjuke personens oberoende så länge som möjligt. Idag förskrivs sällan hjälpme-del för patientgruppen med demenssjukdom.I denna fokusrapport redovisas en sammanställning av material insamlat från Socialstyrelsen,Länsstyrelsen i Stockholm, "Stiftelsen Äldrecentrum" och "Nationellt kompetenscentrumAnhöriga" samt en ny kartläggning bestående av fokusgruppsintervjuermed anhöriga,distriktssköterskor, biståndshandläggare och personal på minnesmottagningar i länet. Enkartläggning som visar att: -Anhöriga är i behov av mer stöd och avlastning än de i dagsläget erbjuds.- Många anhöriga tycker att det är svårt att veta vem de ska vända sig till för att få hjälp eftersom det finns flera huvudmän. - Det finns brist i kompetens hos personal som vårdar personer med demens.- Företrädare inom såväl kommun som landsting anser att det behövs en tydligare be-skrivning av vem som ansvarar för vad ifråga om personer med demens, samt en önskan om fler och bättre samverkansformer för att förhindra att personer med demens"faller mellan stolarna". - Vårdpersonal och biståndshandläggare uttrycker önskemålet om att det borde finnas en funktion/roll som är huvudansvarig för varje person med demenssjukdom, och somkan följa denna/denne genom hela vårdkedjan. Resultaten som presenteras i denna rapport är en sammanvägning av allt material somnämns ovan, dvs en analys av kartläggningens olika delmoment: litteraturgenomgång ochfokusgruppsintervjuer. FörbättringsområdenInformation och utbildning till anhörigaUtbildningsprogram till anhöriga kan minska stress och risk för såväl fysisk som psykiskohälsa, och öka deras förmåga att hantera beteendemässiga problem. Utbildning kan ges iform av kontinuerlig och strukturerad information om demenssjukdomar, bemötande ochvilket stöd samhället erbjuder till anhöriga. Utbildningen kan ges individuellt eller i grupp.Primärvården och distriktssjuksköterskan har en viktig roll i fråga om anhörigstöd som be-höver förtydligas särskilt med tanke på att strukturerad anhörigutbildning med psykosocialtstöd ännu inte är rutinförfarande.Såväl kommuner som landsting behöver ge tydligare information om hur ansvarsfördel-ningen ser ut på sina respektive webbplatser. Broschyrmaterial behöver också arbetas framför att finnas tillängligt på de platser där anhöriga och närstående vistas. Det finns flera pa-tient- och frivilligorganisationer som gör viktiga insatser för människor med demenssjuk-dom. Ett utvecklat samarbete med patientorganisationer är angeläget eftersom de har storkunskap inom området och arrangerar utbildningar och konferenser.Utveckling av stödformerStöd till anhöriga finns i olika former: avlösning i hemmet, dagverksamhet, tillfälligt bo-ende, nätverk, tekniska hjälpmedel, utbildning, psykosocialt stöd och hemtjänst. Det är vik-tigt att man fortsätter att utveckla stödformer av alla slag – men framförallt att de erbjudstill alla som har behov. När det gäller yngre personer med demenssjukdom behövs det flerplatser inom dagverksamhet.Tydligare ansvarsfördelningFör att demenssjuka och deras anhöriga ska ha en fungerande vardag behövs klarare lokalariktlinjer och tydligare rollfördelning mellan landsting och kommuner. Att det finns flerahuvudmän som ansvarar för patientgruppen är ett stort problem. Vård och omsorgsgivareinom Stockholms läns landsting och kommunerna behöver tillsammans arbeta fram en an-svarsfördelning förtydligad i lokala vårdprogram. Exempelvis bör stödet till anhöriga fin-nas med i uppdraget både för minnesmottagningarna och husläkarverksamheten så attverksamheterna stödjer varandra och vårdkedjan hänger ihop. Samordnande kontaktpersonSamtliga parter i vård- och omsorgsarbetet kring personer med demens och även anhöriga,efterlyser en samordnande kontaktperson som kan fungera som "spindeln i nätet", somskulle kunna sköta kontakterna mellan primärvård/landsting och omsorg/kommun. En mo-dell finns i Kalmar där distriktssjuksköterskan är processansvarig för utredningen. Ävenanhörigstöd ligger under distriktssköterskans ansvar, vilket innebär att hon anordnar utbild-ningsträffar för anhöriga. Innehållet i stödet omfattas av medicinsk information, bemötandeoch andra råd och tips. Vid utbildningsträffarna deltar även kommunens handläggare somger information om hjälpinsatserna och olika boendeformer. Gemensam vård och omsorgsplanering samt årlig uppföljningSedan 2010 finns bestämmelser i hälso- och sjukvårdslagen och socialtjänstlagen att närdet finns behov ska en gemensam individuell plan upprättas för personer med psykiskafunktionsnedsättningar. Planeringen ska göras tillsammans med patient och anhöriga för attbehoven av både hälso- och sjukvård och socialtjänst ska tillgodoses. Dokumentet skaockså beskriva de olika insatser och vårdgivarnas ansvar.Hälso- och sjukvården och socialtjänsten bör minst en gång per år följa upp sjukdomensförlopp och anpassa läkemedel, vård och omsorg. Då är det viktigt att föra ett enskilt sam-tal med den anhörige, dels för att följa upp om de beviljade stödformerna är tillräckliga,dels för att kontrollera om den anhöriga fortfarande har möjlighet och ork att vårda sin de-menssjuka närstående. Huruvida gemensamma individuella planer tas fram och årliga upp-följningar görs enligt ovan är okänt men mycket talar för att det inte sker i tillräckligomfattning.Förbättrad kompetensTrygghet är en viktig faktor i omhändertagandet av personer med demens och deras anhö-riga. Anhöriga önskar mer information, och att vård och omsorg utförs av yrkeskunnig per-sonal i sjukdomens alla skeden – från diagnos till palliativ vård, en period som ofta löperöver 5–7 år.Fortbildning för läkare, distriktssköterskor, arbetsterapeuter, biståndshandläggare, vård-och hemtjänstpersonal och andra är också nödvändigt för att öka förståelsen och kunskapenom det komplexa sjukdomstillstånd som demens är, och hur det drabbar de anhöriga. Ökad kompetens för alla yrkesgrupper som kommer i kontakt med demenssjuka, inomsåväl kommun som landsting, innebär att man kan identifiera risker på ett tidigt stadium.En effekt av detta blir att förhindrar kostsamma åtgärder senare i sjukdomsförloppet samtatt livskvaliteten hos patienterna och deras anhöriga förbättras. Fungerande hemvårdFör många äldre är stödet från en anhörig en förutsättning för att kunna bo kvar i det ordi-nära boendet.8För att anhöriga ska klara av detta krävande och mångfacetterande uppdragmåste det finnas ett utvecklat stöd från såväl landsting som kommun, vilket förutsätter ettfungerande samarbete mellan geriatrik, primärvård och äldreomsorg.9Hemvården bör ut-formas i samarbete med de anhöriga som är "experterna" i fråga om vilka behov närstå-ende i fråga har. För att erbjuda personer med demens och deras anhöriga bättre stöd skulleen utökad satsning på uppsökande verksamhet vara önskvärd, där de olika huvudmännentar ett gemensamt ansvar. Önskvärt är också att det skulle finnas ett fungerande multipro-fessionellt team för att möta behoven. Ett team som är mobilt och kan uppsöka den som ärsjuk, och inte tvärtom. Adekvat stöd och ersättningStödinsatser till anhöriga har en positiv effekt på deras hälsa vilket minskar landstingetskostnader på sikt.10Anhöriga som uttrycker önskan om att vårda närstående med demens-sjukdom behöver genom samhällets försorg få förutsättningar för detta, såväl i fråga omeko- nomi som hjälp med vård- och omsorgsinsatser till den sjuke. Inte minst med tanke påatt lejonparten av anhörigvårdarna själva tillhör gruppen äldre. Olika typer av tekniskahjälpmedel kan vara till stor hjälp för den anhöriga och bevara den demenssjuke personensoberoende så länge som möjligt. Idag förskrivs sällan sådana hjälpmedel för den här grup-pen. KvalitetsindikatorerAntalet nationella indikatorer för vård och omsorg för personer med demenssjukdom är 14stycken. Merparten är så kallade utvecklingsindikatorer - det vill säga indikatorer som inteär möjliga att kontinuerligt följa med de uppföljningssystem som finns i dagsläget.11Ingenindikator tar upp stödet till anhöriga. Det är önskvärt att man i framtiden skapar indikatoreräven för anhörigstöd. Registrering i och användningen av kvalitetsregistret SveDem bordegöras i större sträckning av vårdgivarna än som sker idag. Ekonomiska konsekvenserDe anhöriga svarar för den helt dominerande delen av närståendes omsorg och omvårdnadi eget boende. Att sjukvården ser anhöriga som en samarbetspartner och ger adekvat stöd ärpå sikt kostnadseffektivt för landstingets del. Konsekvenserna av otillräckligt stöd kan ledatill ökade kostnader och vårdkonsumtion för såväl patienter som anhöriga.
Stöd till anhöriga i form av service eller behovsprövad insats – handläggning och dokumentation – Meddelandeblad april 2010
Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.
Stöd till anhöriga i form av service eller behovsprövad insats – handläggning och dokumentation – Meddelandeblad april 2010
Regeringen har gett Socialstyrelsen i uppdrag att utarbeta en vägledning till stöd för
tillämpningen av lagstiftningen som rör socialtjänstens arbete med stöd till personer
som vårdar eller stödjer närstående. Som ett led i vägledningsarbetet ger Socialstyrelsen
ut meddelandeblad och broschyrer, tillhandahåller information och publicerar artiklar på
hemsidan "Fokus på anhöriga" samt medverkar vid nationella och regionala konferenser.
Stöd till barn som upplevt våld : Utvecklingen på fältet 2006-2010
Våren 2006 kartlades verksamheter i Sverige som arbetar för att få män som
utövar våld att upphöra med sin våldsutövning mot kvinnor och barn, samt
verksamheter som riktar sig till flickor och pojkar som i sin familj upplever
mäns våld mot kvinnor. Med anledning av en nationell utvärdering av
stödinsatser till barn, vilken pågår 2008 till 2011, genomfördes en förnyad
kartläggning sommaren 2010, av verksamheter riktade till barn som upplever
våld. För denna ansvarade docent Maria Eriksson, Sociologiska institutionen,
Uppsala universitet. Forskningsassistent Marta Wycichowska deltog
också i arbetet. Den här rapporten redovisar resultatet av den förnyade kartläggningen
och beskriver förändringar på fältet under perioden 2006 till
2010.
2010 års kartläggning har begränsats till de typer av organisationer som
utifrån 2006 års rapport kan antas vara de mest relevanta när det handlar om
stöd till barn som upplevt våld: kommunala verksamheter, kvinnojourer samt
barn- och ungdomspsykiatriska mottagningar. Kvinnojourerna respektive
barn- och ungdomspsykiatriska mottagningar fick en enkät som motsvarar
den som skickades ut 2006. Verksamheter i kommunal regi kartlades genom
en genomgång av kommunernas hemsidor. När det gäller vissa nytillkomna
verksamheter har informationen från hemsidan kompletterats med telefonintervjuer.
För att lokalisera verksamheter har viss information också inhämtats
via Länsstyrelserna, forsknings- och projektfinansiärer (som Allmänna
Arvsfonden) samt genom generella sökningar på internet och personliga
kontakter på fältet.
Kartläggningen visar att stöd till barn som upplevt våld är ett fält som
fortfarande expanderar. Antalet identifierade verksamheter har ökat och i
den länsvisa förteckning över verksamheter som finns i rapportens bilaga 1
återfinns totalt 132 verksamheter (jämfört med 87 år 2006). Det är framförallt
bland kommunerna ökningen kan ses och kartläggningen tyder på att det
idag är minst 147 av landets kommuner som själva erbjuder stöd till barn
som upplevt våld. Kartläggningen visar också att det här är ett fält som konsoliderats,
på så sätt att flera små aktörer (i första hand kommuner) slagit sig
samman och etablerat gemensamma verksamheter. Vidare är det fler verksamheter
erbjuder både individuella insatser och grupper för barn, 46 jämfört
med 26 år 2006. Det går att urskilja några nyheter på fältet, i form av nya
modeller för barngrupper, och för terapi för barn och deras omsorgspersoner.
Nyheterna till trots är dock de övergripande tendenserna i stöd och hjälp till
10
barn som upplevt våld densamma 2010 som de var 2006: den vanligaste
formen av insats riktad direkt till barnen tycks fortfarande vara individuella
samtal, oftast benämnda krissamtal, och det är fortfarande oklart i vilken
grad det finns specialisthjälp för de barn som behöver annan hjälp än individuella
krissamtal eller en pedagogisk barngrupp.
Det har varit möjligt att hitta uppgifter om individuella samtal för barn
från minst 112 verksamheter (jämfört med 67 år 2006). Även denna gång är
det så att det i de flesta fall finns uppgifter om att det här arbetet följer eller
inspirerats av Rädda Barnens arbetsmodell Trappan. Det gäller både kommuner
och frivilligorganisationer. När det gäller grupper för barn har de
också blivit vanligare, jämfört med läget 2006. Uppgifter om grupper för
barn finns från 61 verksamheter (jämfört med 41 år 2006). Fortfarande dominerar
modeller för pedagogiska och jag-stödjande grupper vilka ursprungligen
utarbetats för grupper för barn till föräldrar som missbrukar alkohol.
Det går dock att se en del nyheter på fältet. Internationellt har särskilda program
för barn som upplever mäns våld mot kvinnor har funnits sedan åtminstone
15 år tillbaka. Den stora skillnaden mellan dessa program och de
modeller som ligger till grund för de pedagogiska och jag-stödjande grupperna
i Sverige är att de internationella mycket tydligare sätter fokus på våld
och skydd. Ett av dessa våldsfokuserade program finns nu också översatt till
svenska: ett kanadensiskt grupprogram riktat till förskolebarn respektive
skolbarn. Till programmet hör också en insats till barnens mammor. Ytterligare
en ny våldsfokuserad modell för arbetet i barngrupper är en modell för
terapigrupper för barn hämtad från Alternativ til Vold i Oslo (ATV). Den är
utformad för barn i skolåldern eller äldre och även här är rekommendationen
att arbetet med barnen åtföljs med en parallell insats riktad till mammorna
och om möjligt även till papporna. Vid Alla Kvinnors Hus i Stockholm har
ytterligare en ny typ av grupp utvecklats, som ett komplement till befintliga
gruppinsatser. I ett projekt med medel från Allmänna Arvsfonden har boende
barn erbjudits dramagrupp. Den här typen av grupp har fokus på konsekvenserna
av våldet, snarare än känslomässig bearbetning och våldet "i sig".
Kartläggningen från 2006 visade att skyddade boenden för våldsutsatta
kvinnor och deras barn erbjuder ytterligare interventioner för barn som går
utöver individuella samtal och grupp. Det är både ett miljöterapeutiskt inriktat
arbete och stöd i vardagen så att barnen får en rimlig tillvaro under tiden
på det skyddade boendet. Redan 2006 stod det klart att de frivilliga kvinnojourerna
uppmärksammar barn i allt högre utsträckning. Enligt enkätsvaren
2010 kommer den ökande uppmärksamheten också till uttryck i att kvinnojourerna
satsar mer resurser på barn. Av enkäten framgår att 74 av de 97
svarande jourerna har anställd personal (jämfört med 57 av 70 svarande jourer
2006) och att av dessa har 31 (42 procent) personal med särskilt ansvar
för att arbeta med barn/unga som upplevt våld (jämfört med 6 jourer, 11
procent 2006).
11
När det gäller specialisthjälp till barn som upplevt våld visade 2006 års
enkät till barn- och ungdomspsykiatriska mottagningar att det varierade avsevärt
från mottagning till mottagning hur man inom barn- och ungdomspsykiatrin
ser på frågan om barn som lever med våld i sin familj. Därigenom
blir barns möjligheter att få kvalificerad hjälp från barn- och ungdomspsykiatrin
väldigt olika beroende på var i landet de bor. Man kunde också notera
att när det gäller barn- och ungdomspsykiatrins särskilda insatser för barn
som upplever mäns våld mot kvinnor framkom att de flesta använde sig av
Rädda Barnens material Trappan. Det är samma material och modell som
används av socialtjänsten och frivilligorganisationerna. Med tanke på att
barn som söker hjälp hos BUP många gånger är barn med behov som socialtjänsten
och frivilligorganisationerna inte anser sig ha kompetens att tillgodose,
var dessa svar något som i sin tur väckte frågan i vilken grad barn- och
ungdomspsykiatrin i landets olika delar reellt möter behoven av en specialkompetens
som går utöver den som finns hos socialtjänst och frivilligorganisationer.
Den bild som förmedlas i 2010 års enkätsvar ligger på många sätt
nära den tidigare enkätens resultat. Sammantaget kan även svaren från 2010
års enkät tolkas som att BUP endast i undantagsfall erbjuder en insats inriktad
på barn som upplever mäns våld mot kvinnor. Det finns dock några nyheter
i enkäten. En av dessa är behandlingsmodellen Traumafokuserad kognitiv
beteendeterapi (TF-CBT), och just när det gäller TF-CBT pågår också
ett utvecklingsarbete på området.
När det gäller de perspektiv som interventionsmodellerna bygger på dominerar
fortfarande ett utvecklingsperspektiv på barn, där barn blir objekt för
vuxnas ansvar, snarare än aktörer med rätt till delaktighet och medbestämmande,
liksom könsblinda perspektiv där individuell avvikelse står i fokus.
Nyheterna på området skulle på sikt kunna bidra till en breddning av perspektiven.
Det är dock ännu för tidigt att dra några säkra slutsatser om en
sådan utveckling.
Stöd till personer som vårdar eller stödjer närstående. Lägesbeskrivning 2010.
Sedan den 1 juli 2009 ska socialnämnden enligt socialtjänstlagen erbjuda stöd till personer som vårdar eller stödjer en anhörig. Genom enkäter till socialtjänstens verksamheter och kontakter på alla nivåer samt med anhörig-, patient- och frivilligorganisationer har följande bild av hur kommunerna tillämpar bestämmelsen framkommit.
Bristen på dokumentation gör det svårt att få en bild av hur den nya bestämmelsen tillämpas, omfattningen av det stöd som ges och hur stödet utvecklas. Utvecklingen av stödet till anhöriga till personer med långvarig sjukdom eller personer med funktionshinder har kommunerna inte prioriterat tillräckligt högt. Därför är det på dessa områden som Socialstyrelsen kommer att inrikta sitt vägledningsarbete.
Äldreprägeln består
Fortfarande finns en tydlig äldreprägel i arbetet med att erbjuda stöd till anhöriga, eftersom kommunerna i första hand ger stöd till anhöriga till äldre. Arbetet, organisationen, utbudet och innehållet i kommunernas stöd till anhöriga har sina rötter inom vården och omsorgen om de äldre.
Arbetet med att stödja anhöriga är inte integrerat i alla socialtjänstens verksamheter. Stödet håller på att utvecklas, men mycket arbete återstår med att ge stöd till anhöriga till personer med långvarig sjukdom eller yngre personer med funktionshinder.
Kulturskillnader i synen på anhöriga
Man kan tala om olika kulturer i synen på och sättet att förhålla sig till anhöriga i socialtjänsten. De olika verksamheterna har olika och ibland vitt skilda uppdrag och historia. De möter anhöriga i skilda livssituationer och med olika levnadsförhållanden och därmed olika behov av stöd och hjälp.
Anhörigstöd i individ- och familjeomsorgen innebär till exempel ofta något annat än stöd för anhöriga till äldre. På samma sätt har anhöriga till personer med långvarig sjukdom eller funktionshinder ofta andra livsvillkor än anhöriga till äldre, och därmed andra behov av stöd och hjälp.
Brist på data
Det är svårt att få en bild av hur den nya bestämmelsen tillämpas, och av hur stödet till anhöriga som vårdar eller stödjer närstående utvecklas. Problemet är att socialtjänstens behovsprövade insatser dokumenteras på ett sådant sätt att man inte kan identifiera om insatsen beviljas som ett stöd till den anhöriga eller inte. Det är otillfredsställande att Socialstyrelsen inte kan beskriva hur den nya bestämmelsen påverkar enskilda anhöriga. En stor del av socialtjänstens insatser för anhöriga utgörs av icke behovsprövade insatser, s.k. allmänt inriktad service. Det saknas dock för närvarande underlag för att kunna beskriva omfattningen av de serviceinsatser som ges som stöd till anhöriga.
Slutsatser
Socialstyrelsen anser att kommunerna inte har prioriterat att utveckla stöd för anhöriga till långvarigt sjuka och personer med funktionshinder tillräckligt högt.
Socialtjänstens verksamheter behöver fortsätta utveckla arbetet om hur man bemöter anhöriga och se över vilken delaktighet och därmed vilket inflytande de erbjuder anhöriga, särskilt när de handlägger den närståendes ansökan om hjälp.
Många anhöriga har en långvarig kontakt med både hälso- och sjukvården och socialtjänsten. Därför är det nödvändigt att huvudmännen utvecklar kontakterna och rutinerna för samarbete i stödet till anhöriga.
Socialstyrelsen konstaterar att stödet till anhöriga till äldre är mest utvecklat. Socialstyrelsen kommer därför att inrikta sitt vägledningsarbete på utvecklingen av stödet till anhöriga till personer med långvarig sjukdom eller personer med funktionshinder.
Socialstyrelsen kommer att utveckla dialogen med patient-, anhörig- och frivilligorganisationer, för att ta vara på organisationernas kunskaper och erfarenheter i arbetet med att utveckla stödet till anhöriga.
Socialstyrelsen konstaterar att det saknas underlag för att beskriva omfattningen av stödet till anhöriga. Socialstyrelsen avser därför att påbörja arbetet med att skapa ett system, för att kunna samla in uppgifter om serviceinsatser till stöd för anhöriga.
Stöd till personer som vårdar eller stödjer närstående: Lägesbeskrivning 2010
Support/services among family caregivers of persons with dementia – perceived importance and services received
Objective
The aim of this study was to examine what family caregivers of persons with dementia perceive as important types of support/services in relation to experienced negative impact (NI) due to the caregiver situation, and to investigate if caregivers receive the support/services perceived as important.
Method
The study was based on the Swedish part of the EUROFAMCARE project and included 110 caregivers of persons with dementia. Data were collected primarily through structured telephone interviews. The caregivers were divided into two groups, a higher NI group and a lower NI group, based on the NI scale from the COPE index.
Results
Getting information and having someone to talk to were perceived as very important types of support/services by the highest proportion of caregivers in both groups. Data indicated only one significant difference; a higher proportion of caregivers in the higher NI group reported being able to participate in activities outside of caring as very important. There was also an indication that a higher proportion of caregivers in the lower NI group perceived information about the disease as very important. Support/services perceived as important by the caregivers were received both to a high and a low degree.
Conclusion
The results from this study suggest that there is almost no difference between groups of caregivers experiencing higher and lower NI regarding their perception of what are important types of support/services. The caregivers rated different types of support/services within the areas of information, relief and counselling as very important. Copyright © 2009 John Wiley & Sons, Ltd.
Supporting caregivers in ethnically diverse communities: focus on Alzheimer's disease
Supporting the dementia family caregiver: the effect of home care intervention on general well-being.
Systematic review and meta-analysis of interventions relevant for young offenders with mood disorders, anxiety disorders, or self-harm
Background Mood and anxiety disorders, and problems with self-harm are significant and serious issues that are common in young people in the Criminal Justice System. Aims To examine whether interventions relevant to young offenders with mood or anxiety disorders, or problems with self-harm are effective. Method Systematic review and meta-analysis of data from randomised controlled trials relevant to young offenders experiencing these problems. Results An exhaustive search of the worldwide literature (published and unpublished) yielded 10 studies suitable for inclusion in this review. Meta-analysis of data from three studies (with a total population of 171 individuals) revealed that group-based Cognitive Behaviour Therapy (CBT) may help to reduce symptoms of depression in young offenders. Conclusions These preliminary findings suggest that group-based CBT may be useful for young offenders with such mental health problems, but larger high quality RCTs are now needed to bolster the evidence-base.
Ten Steps in Training Volunteer Support Group Facilitators
The applicability of a functional approach to social competence in preschool children in need of special support
The overall aim of the thesis, with four empirical studies, was to test the applicability of a functional approach in investigating social competence of children in need of special support within the preschool context. The main theoretical framework was systems theory. Study I and II investigated preschool teachers' definitions of children in need of special support and social competence respectively. Study III was a prevalence study investigating the number of children in need of special support based on traditional disability categories and functional difficulties. In study IV the social competence of children perceived to be in need of special support based on traditional categories and functional difficulties was compared using an observational method. The results in study I showed that teachers adopt either a child perspective or an organizational perspective in defining children in need of special support. The child perspective was related to a greater number of children in need of special support in the preschools, indicating that in preschools with several children in need of special support, teachers are more prone on seeing the needs of individual children, as opposed to the needs of the organisation. Study II found that teachers define social competence in young children in terms of intrapersonal skills, or as interpersonal relations. Study III found that the majority of children in need of special support are undiagnosed children with functional difficulties related to speech- and language and peer interaction. Study IV found similar profiles of social competence between diagnosed children and undiagnosed children perceived to be in need of special support. Overall, the results yielded support for adopting a functional approach in studying the social competence of children in need of special support.
The burden of long-term care: how Italian family care-givers become employers
In recent years in Italy, population ageing, rising female labour-market participation, and the restructuring of the welfare state have combined to create increased demand for long-term care services for frail and dependent older people. The rising demand has increasingly been met by immigrant women of different nationalities, and to a lesser extent immigrant men, who are hired to provide individualised care in people's own homes and other private settings. While there have been many studies of this growing phenomenon, very little attention has been paid to the reasons that bring family care-givers to choose this care-support option. To begin to fill the gap, this paper reports the finding of a qualitative study of 26 family members who were caring for a disabled elder. Semi-structured interviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responses indicate that they did not choose immigrant home eldercare assistants solely for economic reasons but also to be consistent with cultural, moral and traditional understandings of family responsibilities and care. They also provide valuable findings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection for the free-market and a desire to bypass the state, the majority of the respondents advocated a stronger role of the welfare state in helping people cope with the increased burden of long-term care.
The burden of long-term care: how Italian family care-givers become employers
In recent years in Italy, population ageing, rising female labour-market partici-pation, and the restructuring of the welfare state have combined to create in-creased demand for long-term care services for frail and dependent older people.The rising demand has increasingly been met by immigrant women of differentnationalities, and to a lesser extent immigrant men, who are hired to provideindividualised care in people's own homes and other private settings. While therehave been many studies of this growing phenomenon, very little attention hasbeen paid to the reasons that bring family care-givers to choose this care-supportoption. To begin to fill the gap, this paper reports the finding of a qualitative studyof 26 family members who were caring for a disabled elder. Semi-structuredinterviews lasting between 60 and 100 minutes and that covered various aspects of long-term care in family households were conducted. The participants' responsesindicate that they did not choose immigrant home eldercare assistants solely foreconomic reasons but also to be consistent with cultural, moral and traditionalunderstandings of family responsibilities and care. They also provide valuablefindings and insights into Italian attitudes towards the welfare state and the care-labour market. While the wealthiest respondent declared a clear predilection forthe free-market and a desire to bypass the state, the majority of the respondentsadvocated a stronger role of the welfare state in helping people cope with theincreased burden of long-term care.
The desire for control: Negotiating the arrangement of help for older people in Sweden
The interface between formal (public) and informal help for older people is unclear and subject to change in many welfare states. Our aim in this study was to contribute to increased understanding of the experiences of older people, their next of kin, and the care managers from the municipalities in the process of negotiating help in the everyday lives of older people who can no longer manage on their own. We took a qualitative approach, using qualitative interviews as the main data collection method. The results revealed that the different actors had contrary interests that made it difficult for all parties to be content with the outcome of the negotiations. The everyday lives of dependent older people and their next of kin are strongly affected by the conditions of formal eldercare.
The Effect of Telephone Support Groups on Costs of Care for Veterans With Dementia
Purpose: Few studies have addressed the effects of caregiver interventions on the costs of care for the care recipient. This study evaluated the effects of a caregiver education and support group delivered via the telephone on care recipient health care utilization and cost. Design and Methods: The Telehealth Education Program (TEP) is a manualized program of education and support designed for caregivers of veterans with moderate-to-severe dementia. One hundred fifty-eight spousal caregivers were randomly assigned to either the ten 1-hr sessions of TEP or the usual care (UC). Health care utilization and cost data were extracted from veterans Information System Technology Architecture databases and included outpatient, inpatient, and nursing home data within the VA. Results: Total health care cost data showed a significant (p = .039) average cost savings of $2,768 per patient at 6 months for TEP as compared with UC, but these were not maintained at 1 year. All costs included in the total costs measure contributed to this difference. Inpatient, outpatient, and nursing home costs were all assessed separately, but only nursing home costs reached significance (p = .009), with a savings of $1,057 per patient at 6 months. Implications: The TEP caregiver intervention resulted in short-term cost savings for veteran care recipients. Future studies of caregiver interventions should examine their effects on costs of care for the care recipients in addition to their effects on caregiver outcomes.
Kommunikation hos och med barn och ungdomar med flerfunktionsnedsättningar
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
Kommunikation hos och med barn och ungdomar med flerfunktionsnedsättningar: En systematisk kunskapsöversikt
Krisstöd för barn och ungdomar vid allvarlig händelse: en forskningsöversikt
Psychosocial dimensions of family burden among two groups of carers looking after psychiatric patients
In this study we examined the relationship between level of family burden adn extent of psychological distress among family members of 52 psychiatric patients. Our sample consisted of 31 chronic and 21 subchronic patients with a diagnosis of schizophrenia. The paper focused on the influence of psychosocial factors, such as the sense of personal control and coping strategies upon the extent and the perception of burden. The carers of chronic patients more frequently used a passive way of coping with everyday problems. Passivity and variability on behalf of the carers were significantly correlated with areas of objective burden. Consistent with a stress-process model, we found that the factor of mastery correlated significantly with family burden and distress scores. The findings of the study are discussed in the context of community family interventions.
Reducing Parental Risk Factors for Children's Substance Misuse: Preliminary Outcomes with Opiate-Addicted Parents.
Parents in methadone treatment were offered an experimental intervention, Focus on Families, designed to reduce their risk of relapse and their children's risk of substance use. Experimentally assigned volunteers participated in systematic group training in relapse prevention and parenting skills, and received home-based case management services. Immediate posttreatment outcome results reported here include analyses of covariance controlling for baseline measures. Analyses show experimental parents held more family meetings to discuss family fun, displayed stronger refusal/relapse coping skills, demonstrated stronger sense of self-efficacy in role-play situations, and had lower levels of opiate use than control subjects. No significant differences in family bonding, family conflict, or other measures of drug use were found. The utility of intervening with drug-addicted parents in methadone treatment is discussed in light of these findings.
Life Situation as Next of Kin to Persons in Need of Care: Chronic Sorrow, Burden and Quality of Life
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.
Risks and interventions for the parentally bereaved child
Self-Efficacy: The exercise of control
Ideal for advanced undergraduate or graduate courses, or for professional use, the book is based on Bandura's theory that those with high self-efficacy expectancies - the belief that one can achieve what one sets out to do - are healthier, more effective, and generally more successful than those with low self-efficacy expectancies. He begins with a discussion of theory and method: what self-efficacy is and how it can be developed. Bandura then demonstrates how belief in one's capabilities affects development and psychosocial functioning during the course of life, underscoring provocative applications of this work to issues in education, health, psychopathology, athletics, business, and international affairs
The effect of peer bereavement support groups on the selfesteem, depression, and problem behavior of parentally bereaved children
Akad. Avh.
The purpose of this research was to examine the effects of peer bereavement support groups for parentally bereaved children, specifically in the areas of self-esteem, depression, and behavior. The sample was drawn from middle school students in a suburban school district who have experienced the death of a parent sometime during their life. Seventeen students were assigned to four groups. Pretesting and posttesting were done utilizing the Piers-Harris Self-Concept Scale, the Child Behavior Checklist (which includes a Teacher Report Form and a Youth Report Form), the Children's Depression Scale, and a Support Group Rating Scale to measure if participation affected sense of isolation, contributed to normalizing the death experience, and provided a comfortable environment in which to practice newly acquired coping skills. The posttest data from all but the Support Group Rating Scale was analyzed using a two-way analysis of variance (ANOVA). The Support Group Rating Scale was analyzed by comparing percentages of responses in the pretest and posttest data. The Support Group Rating Scale responses were also analyzed using nonparametric tests. The postintervention statistical analysis failed to show any statistically significant effect on any of the hypotheses except one item on the Support Group Rating Scale. This item (13) death with a participant's belief about his or her ability to cope with loss. Information evaluation of the Support Group Rating Scale and the evaluations indicate positive effect. Recommendations based on results are discussed.
The lifeworld of the cronic mental ill: analysis of 40 written personal accounts
In this study, chronicity in mental illness has been investigated as it is lived rather than how it might be conceptualized. Published first-hand accounts have provided the mechanism for direct access in coming to know the life of persons, their circumstances, and the meanings they associate with a life of persistent and enduring mental illness. These are unique and particular human experiences, and there are no empirical generalizations or law-like statements that can give such an understanding. Therefore the disclosure of meaning was sought through a hermeneutic-phenomenologic process. Four lifeworld existentials provide the framework for a combined description and interpretation of what it means to "live" chronic mental illness. The article concludes with a brief discussion of some implications for nursing practice, and commentary is made on the relevance of such insights to health care providers in both acute and community care settings.
Themes in the bereavement experience of inner city adolescents
Abstract
PROBLEM:
There is a lack of information about the bereavement experiences of adolescents living in poverty in the inner city.
SUBJECTS:
Eight bereaved adolescents (mean age = 13.5 girls, 3 boys), from poverty-level families, attending an inner city junior high school.
METHODS:
A descriptive design, using participant-observation in a semi-structured group setting, data were gathered using audiotape recordings of the eight group discussions.
FINDINGS:
Chaos and stress were major themes pervading each discussion session. Lack of family and social support, fear for their future, and avoidance as the major coping strategy were also themes of the study.
CONCLUSIONS:
Inner city adolescents need to be assessed for loss of significant others. Provision of mental health services in schools could provide intervention services to current and future problems.
Unga vid Vändpunkten. Att arbeta med ungdomar vars föräldrar missbrukar
Vad kostade handikappreformen?
Socialstyrelsen följer upp och utvärderar 1997:1
Vård och omsorg om äldre personer och personer med funktionshinder 1996
A Secure Base: Parent-Child Attachment and Healthy Human Development
Augmentative and alternative communication systems: Considerations for individuals with severe intellectual disabilities
Augmentative and alternative communication (AAC) research and intervention for individuals with severe intellectual disabilities has advanced significantly in the last 5 years. This paper provides an integrated review of the current literature in this area, suggests future research directions, and delineates clinical and educational implications. The integration of behavioral and technological advances in the AAC field provides an optimistic outlook for the future development of functional communication systems for persons with severe intellectual disabilities.
Cognitive, Behavioral, and emotional problems among school-age children of alcoholic parents
Sixty-four children from 37 families with an alcoholic parent were compared with 80 children from 45 families that did not have an alcoholic parent on measures of intelligence, cognitive achievement, psychological and physical disorders, impulsivity-hyperactivity, social competence, learning problems, behavior problems, and self-esteem. On nine of 17 tests, the children of alcoholic parents scored less well than did the children of nonalcoholic parents, although both were within normal ranges. Factor analysis yielded significant differences between the two samples in emotional functioning and cognitive abilities and performance; marginally significant differences were found with respect to behavior problems.
Patients' sense of support within the family in the palliative care context: what are the influencing factors?
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.
Perceived Parenting Change and Child Posttraumatic Stress Following a Natural Disaster
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.
Perpetration patterns and environmental contexts of IPV in Sweden: Relationships with adult mental health
Although excellent data exist on the overall prevalence of childhood exposure to intimate partner violence (IPV), there is less information available on the specific patterns of IPV exposure in childhood and how they influence adult mental health. The current study examines 703 Swedish adults who reported exposure to IPV in childhood. Participants were part of a large national study on violence exposure. They provided an extensive history of their exposure to IPV and maltreatment experiences during childhood via electronically administered questionnaires. Mean comparison and multivariate regression methods were employed to assess differences in violence severity by reported perpetration pattern (mother-only, father-only, bidirectional or other), the association between violence severity and environmental context, and the contribution of these characteristics to adult mental health outcomes. Overall, violence perpetrated in public and by fathers was more severe and was related to poorer mental health outcomes in adulthood for child witnesses. These findings provide important insight into possible clinical "flags" for identifying children at high risk for exposure to IPV and abuse in the home.
Personlig assistans för barn. Tillsyn av enskilda assistansanordnare
Under 2011 infördes förändringar i lagstiftningen för personer med
funktionsnedsättning i syfte att förbättra förutsättningarna för kvalitet och trygghet för de som har personlig assistans.
Denna rapport är en redovisning av resultatet från inspektioner genomförda
våren 2013 av 50 enskilda assistansanordnare som hade tillstånd att bedriva
assistans för barn. Syftet med tillsynen var att granska om insatserna för barnen var av god kvalitet och rättssäkra samt om barnperspektivet beaktades i verksamheterna. Fokus under inspektionerna låg på ledningssystemet för det systematiska kvalitetsarbetet, den sociala dokumentationen, möjligheterna till kompetensutveckling för assistenterna, samt barnens möjligheter till delaktighet, att komma till tals och att få sina behov av fysisk och psykisk utveckling tillgodosedda. Redovisningen baseras på intervjuer med verksamhetsansvariga, dokumentationsgranskning och samtal med barn.
Slutsatser och bedömningar
Det stora flertalet assistansanordnare hade ett ledningssystem, men det fanns behov av förbättringar.
Nästan samtliga anordnare hade kompetensutveckling för sina assistenter, men den varierade stort i omfattning. Eftersom det saknas formella kompetenskrav för assistenter ställer det speciella krav på anordnaren att säkerställa att barnet genom sina assistenter får insatser av god kvalitet.
Stora brister i dokumentationen uppmärksammades när det gällde såväl hantering av handlingar som innehåll - brister som kan äventyra barnens rättssäkerhet. Brister i dokumentationen gällde också barnens genomförandeplaner, vilket påverkar barnens möjligheter till delaktighet.
Drygt hälften av anordnarna uppgav att de på olika sätt och i olika omfattning beaktade barnperspektivet, barns behov och/eller barns bästa. Det var bara hos en mindre andel av anordnarna som barnperspektivet uttalat ingick i ledningssystemet. Detta försvårar samtidigt för anordnare att på ett systematiskt sätt säkra att barnperspektivet genomsyrar hela verksamheten.
Möjligheten till frigörelse och utveckling för barn med egna föräldrar eller närstående som personliga assistenter bör uppmärksammas i tillsynen.
Samtal har förts med för få barn för att kunna säga något ur barnens perspektiv om hur personlig assistans för barn fungerar generellt eller hos enskilda assistansanordnare. Men i de samtal som genomförts framkommer en positiv bild av barnens upplevelse av sin assistans.
För att förbättra möjligheterna att ta del av synpunkter från barn med personlig assistans behöver tillsynen utveckla metoder för samtal med barn, men också avseende alternativa sätt att inhämta information om barnen.
Personlig assistans för barn. Tillsyn av enskilda assistansanordnare
Under 2011 infördes förändringar i lagstiftningen för personer med
funktionsnedsättning i syfte att förbättra förutsättningarna för kvalitet och trygghet för de som har personlig assistans.
Denna rapport är en redovisning av resultatet från inspektioner genomförda
våren 2013 av 50 enskilda assistansanordnare som hade tillstånd att bedriva
assistans för barn. Syftet med tillsynen var att granska om insatserna för barnen var av god kvalitet och rättssäkra samt om barnperspektivet beaktades i verksamheterna. Fokus under inspektionerna låg på ledningssystemet för det systematiska kvalitetsarbetet, den sociala dokumentationen, möjligheterna till kompetensutveckling för assistenterna, samt barnens möjligheter till delaktighet, att komma till tals och att få sina behov av fysisk och psykisk utveckling tillgodosedda. Redovisningen baseras på intervjuer med verksamhetsansvariga, dokumentationsgranskning och samtal med barn.
Slutsatser och bedömningar
Det stora flertalet assistansanordnare hade ett ledningssystem, men det fanns behov av förbättringar.
Nästan samtliga anordnare hade kompetensutveckling för sina assistenter, men den varierade stort i omfattning. Eftersom det saknas formella kompetenskrav för assistenter ställer det speciella krav på anordnaren att säkerställa att barnet genom sina assistenter får insatser av god kvalitet.
Stora brister i dokumentationen uppmärksammades när det gällde såväl hantering av handlingar som innehåll - brister som kan äventyra barnens rättssäkerhet. Brister i dokumentationen gällde också barnens genomförandeplaner, vilket påverkar barnens möjligheter till delaktighet.
Drygt hälften av anordnarna uppgav att de på olika sätt och i olika omfattning beaktade barnperspektivet, barns behov och/eller barns bästa. Det var bara hos en mindre andel av anordnarna som barnperspektivet uttalat ingick i ledningssystemet. Detta försvårar samtidigt för anordnare att på ett systematiskt sätt säkra att barnperspektivet genomsyrar hela verksamheten.
Möjligheten till frigörelse och utveckling för barn med egna föräldrar eller närstående som personliga assistenter bör uppmärksammas i tillsynen.
Samtal har förts med för få barn för att kunna säga något ur barnens perspektiv om hur personlig assistans för barn fungerar generellt eller hos enskilda assistansanordnare. Men i de samtal som genomförts framkommer en positiv bild av barnens upplevelse av sin assistans.
För att förbättra möjligheterna att ta del av synpunkter från barn med personlig assistans behöver tillsynen utveckla metoder för samtal med barn, men också avseende alternativa sätt att inhämta information om barnen.
Perspektiv på barns delaktighet som anhöriga
Predicting stability and change in loneliness in later life
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.
Developing a carer identity and negotiating everyday life through social networking sites: an explorative study on identity constructions in an online Swedish carer community
An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers' capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.
Rättigheter och barnperspektiv (filmad föreläsning). Livets möjligheter - för personer med flerfunktionsnedsättning, deras anhöriga och omgivning
How can web-based training facilitate a more carer friendly practice in community-based health and social care services in Norway? Staff experiences and implementation challenges
It is a central feature of current Norwegian health and social care policy to see informal carers as active partners. However, research has revealed that carers often experience a lack of recognition by professionals. In 2010, the Norwegian Directorate of Health initiated a web-based competence-building programme (CBP) for health and social care practitioners aimed at facilitating collaboration with carers. The programme comprised case presentations, e-lectures, exercises and topics for discussion, and was introduced in 2012. It was flexible and free of charge. This article is based on a study (2012-2013) that followed the piloting of this CBP in four settings. The study aimed to explore factors that influenced the implementation of the programme and whether or not using it affected health and social care practitioners' attitudes and perceived capacity for collaboration with carers. The study employed a mixed-methods design. A questionnaire was distributed to all staff before and 5 months after the CBP was introduced, followed by focus group interviews with a sample of staff members and individual interviews with the leadership in the involved settings and those who introduced the programme. The quantitative data were analysed using descriptive statistics, which subsequently formed the basis for the focus group interviews. The qualitative data were analysed by means of content analysis. The programme's introduction was similar across all research settings. Nevertheless, whether or not it was adopted depended to a large extent on leadership commitment and engagement. In settings where the programme's use was monitored, supported by management and formed part of on-the-job training, there seemed to be a positive impact on staff attitudes concerning collaboration with carers. Participant staff reported that their awareness of, motivation for and confidence in collaboration with carers were all strengthened. In contrast, the programme was of minimal benefit in settings with low leadership engagement.
Siblings of children with cancer – their experiences of participating in a person-centered support intervention combining education, learning and reflection: Pre- and post-intervention interviews
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 viktigt
"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.
Sociala medier och den kapabla patienten - partnerskap på internet
Språkutveckling på olika villkor
Stöd till personer som vårdar eller stödjer närstående, Slutrapport 2014
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.
Stödet till anhöriga omsorgsgivare. RiR, 2014:9.
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.
Supporting families living with parental substance misuse: the M-PACT (Moving Parents and Children Together) programme
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.
Tailoring a family-based alcohol intervention for Aboriginal Australians, and the experiences and perceptions of health care providers trained in its delivery
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.
Tangible Symbols as an AAC Option for Individuals with Developmental Disabilities: A Systematic Review of Intervention Studies
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.
Tangible Symbols as an AAC Option for Individuals with Developmental Disabilities: A Systematic Review of Intervention Studies
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.
The benefits of e-health support for older family caregivers in rural areas.
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 development of social strengths in children with cerebral palsy
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?
The Early intervention program. A parent’s guide
The existential life situations of spouses of persons with dementia before and after relocating to a nursing home
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.
The influence of bereavement on Body Mass Index: Results from a national Swedish survey’
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.
The Role of Caring Adults in the Lives of Children of Alcoholics
Longitudinal studies of children of alcoholics in a community context are rare, but are of special interest because they provide the opportunity to study families with alcoholic parents who do not reach clinical settings and with offspring who do not receive professional help. The current study reports on the 65 offspring of alcoholics who participated in the Kauai Longitudinal Study. The extensive data on these analyses included questionnaires and interviews of both children and adults that were collected over a 30-year period. The data showed that individuals who coped effectively with the trauma of growing up in an alcoholic family and who became competent adults relied on a significantly larger number of sources of support in their childhood and youth than did the offspring of alcoholics with coping problems by age 32.
The Role of Parental ADHD in Sustaining the Effects of a Family-School Intervention for ADHD.
This study investigated the extent to which parental Attention-Deficit/Hyperactivity Disorder (ADHD) symptoms impact child and parent outcomes following a multimodal family-school intervention, the Family School Success (FSS) program, when compared to an active-control condition (CARE). Participants were 139 children with ADHD (67% male; 91% non-Hispanic; 77% Caucasian; Grades 2-6) and their primary caretaker (91% female; ages 26-59) who participated in a randomized clinical trial evaluating the efficacy of FSS. Associations were examined between parent-reported ADHD symptoms at baseline and intervention outcomes reported by parents and teachers after treatment and at a 3-month follow-up, including child homework and classroom impairments, child ADHD and oppositional defiant disorder symptoms, parenting behaviors, and parent-teacher relationship quality. Across both treatment conditions, parental ADHD was not associated with parent or child outcomes at postassessment. However, differences emerged between the two treatment groups at follow-up for parents with ADHD, particularly when an empirically supported symptom cutoff was used to identify parents at risk for having ADHD. In FSS, but not in CARE, parental ADHD was associated with declines in treatment gains in the quality of the parent-teacher relationship and the child's homework performance. Parents at risk for ADHD had difficulty maintaining treatment effects for themselves and their child in the FSS intervention but not in CARE. The supportive and educational components central to the CARE intervention may be helpful in promoting the sustainability of psychosocial interventions for children with ADHD who have parents with elevated ADHD symptoms.
Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst – lägesrapport
Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning
Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst – lägesrapport
Denna lägesrapport beskriver tillståndet och utvecklingen inom hälso- och sjukvården och socialtjänsten. Avsikten med rapporten är att ge en samlad bild av dessa områdens olika verksamheter. Sammanfattningen följer samma struktur som rapporten, som i sin tur bygger på kvalitetsmål och kvalitetsområden för vården och omsorgen. En mer grundlig beskrivning av kvalitetsmålen och kvalitetsområdena finns i rapportens inledning
Transitions in Caregiving: Evaluating a Person-Centered Approach to Supporting Family Caregivers in the Community
Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.
Public expenditure costs of carers leaving employment in England, 2015/2016.
In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer'sAllowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as "replacement care" to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.
Samtal som familjestödjande praktik: barn som anhöriga när föräldrar har psykiska problem
Rapporten redovisar resultatet av en forskningsstudie om familjestödjande samtal med barn och föräldrar i familjer där mamma och/eller pappa har psykiska problem som föranleder kontakt med vuxenpsykiatrin. Det studerade familjestödet bygger på ett utvecklat samarbete mellan en landstingsdriven vuxenpsykiatrisk mottagning och en familjeenhet inom socialtjänsten i en medelstor kommun i Mellansverige. Den del av familjestödet som har studerats är den serie samtal som erbjuds genom familjeenheten och som genomförs där.
Studiens övergripande syfte var att undersöka hur familjestödjande samtal fungerar och organiseras i samspel mellan barn, föräldrar och professionella. Mer specifikt avsåg studien belysa om och hur barn genom dessa samtal får stöd att prata om föräldrars psykiska problem samt huruvida och på vilket sätt familjestödet kan bistå föräldrarna i deras föräldraskap.
Inom ramen för forskningsstudien samlades data in från 21 familjestödssamtal samt intervjuer med sju föräldrar och fyra barn efter avslutat familjestöd. Dessutom genomfördes sju intervjuer med samtalsledarna som medverkat vid de studerade familjestödssamtalen. Tre familjer följdes genom hela samtalsserien som för dessa familjer omfattade mellan sex och åtta samtal. Samtliga familjestödssamtal spelades in med ljud och bild medan enbart ljud gällde för intervjuerna.
Familjestödssamtalen analyserades med samtalsanalytiska och narrativa metoder. Viktiga teoretiska utgångspunkter var det som brukar kallas institutionella samtal och teorier om socialt samspel i interaktion. Av betydelse var också tidigare forskning om barnsamtal och familje-samtal som kommunikativ praktik och i institutionella kontexter t.ex. familjeterapi, samt internationella och nationella studier om familjestödjande interventioner av typen Beardslees preventiva familjeinterventionoch den finska kortversionen Föra barnen på tal
Shit, den här människan bryr sig om mig!: Om skolans förmåga att upptäcka och ge stöd till elever som växer upp med föräldrar som har missbruksproblem
Den här rapporten handlar om hur skolan kan utveckla sin förmåga att upptäcka och ge stöd till elever,
om lever i familjer med missbruk. Underlaget är ett projekt Skol-BIM (Barn i missbruksmiljö i skolan)
som har det övergripande syftet att bidra till att dessa elever ska klara sin skolgång utifrån skolans mål och därmed förbättra sina möjligheter till ett gott liv, här och nu och som vuxna. Rapportens syfte är förutom redovisning av projektet, att inspirera fler skolor att öka sin förmåga att upptäcka och ge relevant stöd till barn vars föräldrar har problem med missbruk.
Stöd till anhöriga i samband med palliativ vård i hemmet
Kunskapsöversikten bygger på en litteraturgenomgång av internationella och nationella vetenskapliga studier inom området. Den kartlägger de olika typerna av stöd som finns tillgängliga för anhöriga till personer som får vård i livets slutskede och bor hemma. Kunskapsöversikten är viktig ur ett anhörigperspektiv då anhöriga i den typen av situationer är en grupp som ofta ställs inför stora utmaningar – att försöka förlika sig med den förestående förlusten av någon de älskar, samtidigt som de vill se att den sista tiden i livet ska blir så bra som möjligt.
The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality
Abstract [en]
Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.
Titanium : En liten bok om stora hjältar i deras kamp mot cancer
Väldigt berörande! Ett barn, hans bror, en familj drabbad av cancer så nära beskrivet att det kryper under skinnet på läsaren. Hur jobbigt och oroligt det faktiskt är både i stort och smått i den situation familjen levt med under alla dessa år. Författaren speglar även väldigt väl hur viktigt det är med förtroende och bemötande inom vården. En bok av detta slag bör varje vårdarbetare läsa och lägga de insikter den ger i bakhuvudet för att bättre kunna förstå helhetssituationen för patienten och familjen.Nils Erik Svedlund, barnläkareMaria tar oss med i många års kamp med ett cancersjukt barn och deras vardag. Vi kommer nära förtvivlan, smärta och tristess men också hopp, glädje och en stark syskonrelation. En viktig bok, även för personal och vårdutbildningar!Angelica Lindberg, kuratorSå glad att denna ärliga och viktiga bok finns! Berättelsen gav mig en insikt och förståelse för hur livet kan te sig i en familj med ett cancersjukt barn! När jag läste Titanium var det som om jag själv fanns med i familjens vardag och närhet. Så levande, så äkta, både kärleksfullt och skrämmande. Vilken styrka, vilket tålamod, vilken förmåga att ta vara på det minsta lilla positiva trots det ofattbara som händer under cancerbehandlingen. En mycket varm, närvarande och viktig berättelse om en lång, återkommande kamp mot leukemi i unga år och de konsekvenser det får för alla i familjen. Men också vikten av att tänka på syskonen, att låta dem finnas med och få plats i den vardag som blivit. Titanium är en bok jag varmt vill rekommendera, särskilt till de som arbetar inom vård och skola.Anneli Träff, grundskollärare
Utan assistans stannar livet - Ett stycke svensk historia
När jag var liten fanns inte personlig assistans. Jag behövde mycket hjälp hela tiden. Mina föräldrar orkade inte med allt, trots att dom älskade mig. Därför var jag tvungen att bo på vårdhem. Det var det värsta jag varit med om. Jag ville inte äta. Jag slutade skratta och gråta. Doktorn sa till mamma och pappa att jag var så svårt skadad att jag aldrig skulle bli vuxen, och att de inte skulle orka ta hand om mig hemma. 1972, när jag var sju år, bestämde mamma sig för att ta hem mig. Året efter fick jag personlig assistans 40 timmar i veckan av kommunen. Tack vare det kunde jag få bra hjälp och vågade börja visa mina känslor igen. När jag var 26 år fick jag personlig assistans hela dygnet och flyttade till en egen lägenhet. Idag är jag 52 år, har ett bra liv och är mycket sällan sjuk, tack vare bra personlig assistans.
Den här boken kan hämtas och läsas i iBooks på din Mac eller iOS-enhet
Vem är bäst : En familjs verklighet i autismens gåtfulla liv
Att få ett autistiskt barn är något av det mest omvälvande man kan uppleva. Livet som Autist skiljer sig så mycket från ett vanligt, vilket även kom att innebära dramatiska förändringar för oss som föräldrar. Det som var så självklart blev nu bergsliknande hinder som skulle ta all vår kraft och energi för att lösa och hitta vägar som fungerar. ?Boken beskriver hur det var att få ett autistisk barn till de utmaningar som ungdomsåren och vuxenlivet förde med sig. Det vi trodde var en manual i uppväxt visade sig vara något helt annat i autismens inneslutna värld. ?Vår son är idag vuxen och vi kan se tillbaka på ett liv full av överraskningar utmaningar och många misslyckanden. Men samtidigt många segrar. Vårt liv fick inte bli isolerad från all det vi ville uppnå tillsammans med våra barn. Autismen fick inte segra, det skulle vara vår tydliga mål, ja livsuppgift. Autism skulle inte vara vår son utan bara en del av honom. Bakom ögonen fann vi en riktig go, glad, kärleksfull och alldeles underbar kille, vi hittade vår son.??Berättelsen börjar en vårdag 1993. En vanlig dag kan det verka som, men denna lördag skulle våra liv förändras för alltid. Det liv vi hade hoppats på skulle nu för alltid vara borta. Vi visste det bara inte då.
When a parent dies - a systematic review of the effects of support programs for parentally bereaved children and their caregivers
Abstract
BACKGROUND:
The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to identify gaps in the research. METHODS: The review's inclusion criteria were comparative studies with samples of parentally bereaved children. The focus of these studies were assessments of the effects on children of a bereavement support intervention. The intervention was directed towards children 0-18 years; but it could also target the children's remaining parent/caregiver. The study included an outcome measure that dealt with effects of the intervention on children. The following electronic databases were searched up to and including November 2015: PubMed, PsycINFO, Cinahl, PILOTS, ProQuest Sociology (Sociological Abstracts and Social Services Abstracts). The included studies were analysed and summarized based on the following categories: type of intervention, reference and grade of evidence, study population, evaluation design, measure, outcome variable and findings as effect size within and between groups. RESULTS: One thousand, seven hundred and-six abstracts were examined. Following the selection process, 17 studies were included. The included studies consisted of 15 randomized controlled studies, while one study employed a quasi-experimental and one study a pre-post-test design. Thirteen studies provided strong evidence with regards to the quality of the studies due to the grade criteria; three studies provided fairly strong evidence and one study provided weaker evidence. The included studies were published between 1985 and 2015, with the majority published 2000 onwards. The studies were published within several disciplines such as psychology, social work, medicine and psychiatry, which illustrates that support for bereaved children is relevant for different professions. The interventions were based on various forms of support: group interventions for the children, family interventions, guidance for parents and camp activities for children. In fourteen studies, the interventions were directed at both children and their remaining parents. These studies revealed that when parents are supported, they can demonstrate an enhanced capacity to support their children. In three studies, the interventions were primarily directed at the bereaved children. The results showed positive between group effects both for children and caregivers in several areas, namely large effects for children's traumatic grief and parent's feelings of being supported; medium effects for parental warmth, positive parenting, parent's mental health, grief discussions in the family, and children's health. There were small effects on several outcomes, for example children's post-traumatic stress disorder (PTSD) symptoms, anxiety, depression, self-esteem and behaviour problems. There were studies that did not show effects on some measures, namely depression, present grief, and for the subgroup boys on anxiety, depression, internalizing and externalizing. CONCLUSIONS: The results indicate that relatively brief interventions can prevent children from developing more severe problems after the loss of a parent, such as traumatic grief and mental health problems. Studies have shown positive effects for both children's and remaining caregiver's health. Further research is required including how best to support younger bereaved children. There is also a need for more empirically rigorous effect studies in this area.
Viewpoints of working sandwich generation women and occupational therapists on role balance strategies
Abstract
Occupational therapists need to be cognizant of evidence-based role balance advice and strategies that women with multigenerational caring responsibilities can implement independently or with minimal assistance, as role balance may not be the primary goal during many encounters with this population. Hence, this study aimed to identify the viewpoints on the most helpful role balance strategies for working sandwich generation women, both from their own perspectives and from the perspective of occupational therapists. This was achieved through a Q methodology study, where 54 statements were based on findings from interviews, sandwich generation literature and occupational therapy literature. In total, 31 working sandwich generation women and 42 occupational therapists completed the Q sort through either online or paper administration. The data were analysed using factor analysis with varimax rotation and were interpreted through collaboration with experts in the field. The findings revealed similarities between working sandwich generation women and occupational therapists, particularly in terms of advocating strategies related to sleep, rest and seeking practical assistance from support networks. Differences were also present, with working sandwich generation women viewpoints tending to emphasize strategies related to coping with a busy lifestyle attending to multiple responsibilities. In contrast, occupational therapy viewpoints prioritized strategies related to the occupational therapy process, such as goal setting, activity focused interventions, monitoring progress and facilitating sustainable outcomes.
Vägar till förbättrad samordning av insatser för barn med funktionsnedsättning
Kunskapsstödet presenterar en modell för hur samordning av insatser för barn med funktionsnedsättning kan förbättras av kommuner och landsting. Modellen förväntas öka barns tillgång till fungerande stöd och minska föräldrars arbetsbelastning. Här ges organisatoriska och praktiska framgångsfaktorer i arbetet med att utveckla samordning.
Young carers in Sweden – A short overview
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 responsibilities
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.
A Semiotic Perspective for AAC
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).
A Semiotic Perspective for AAC
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).
Brief Symptom Inventory: Administration, Scoring and Procedures Manual
Children who care – inside the world of young carers
Coping Responses Inventory: Youth form, professional manual
Coping Responses Inventory: Youth form, professional manual
Coping Responses Inventory: Youth form, professional manual
Gender and the social rights of citizenship: state policies and gender relations in comparative perspective.
Growing Up and Growing Old. Ageing and Dependency in the Life Course
Ranging across disciplinary boundaries, this book analyzes metaphors of dependency in differing contexts - the body, the family, work and leisure. Combining a robustly critical analysis with breadth of interdisciplinary sweep, Growing Up and Growing Old challenges the stigmatizing role that stereotypes can play in the lives of particular groups of people.
Lag om stöd och service för vissa funktionshindrade
Missbrukarnas barn. På daghem och fritidshem, i skolan och vården
Monitoring the future: questionnaire responses from the nation’s high school seniors
Peer group counselling with bereaved adolescents
An experiment is described which aimed to help bereaved teenagers through peer group counselling, and also to examine the related issue of how reliably we can measure the effectiveness of such counselling. This involved a systematic approach to the subjective impressions of participants, and also used objective measurement techniques. Subjects perceived the group counselling sessions to have had a high value, and certain consistent trends were revealed concerning participants' previous experience of their bereavement and concerning the medium-term effects of adolescent bereavement. Statistical analysis of the objective tests paralleled this with improvements in several areas, though the extent of the statistical significance of those improvements is debatable. Recommendations are made concerning the implications for the pastoral care of bereaved pupils in schools.
Piers-Harris Children´s Self-Concept Scale: Revised Manual 1984
Prevention of progression to severe obesity in a group of obese schoolchildren treated with family therapy
STUDY OBJECTIVE. To evaluate the effect of family therapy on childhood obesity. DESIGN. Clinical trial. One year follow-up. SETTING. Referral from school after screening. PARTICIPANTS. Of 1774 children (aged 10 to 11), screened for obesity, 44 obese children were divided into two treatment groups. In an untreated control group of 50 obese children, screened in the same manner, body mass index (BMI) values were recorded twice, at 10 to 11 and at 14 years of age. INTERVENTION. Both treatment groups received comparable dietary counseling and medical checkups for a period of 14 to 18 months, while one of the groups also received family therapy. RESULTS. At the 1-year follow-up, when the children were 14 years of age, intention- to-treat analyses were made of the weight and height data for 39 of 44 children in the two treatment groups and for 48 of the 50 control children. The increase of BMI in the family therapy group was less than in the conventional treatment group at the end of treatment, and less than in the control group (P = .04 and P = .02, respectively). Moreover, mean BMI was significantly lower in the family therapy group than in the control group (P < .05), and the family therapy group also had fewer children with BMI > 30 than the control group (P = .02). The reduction of triceps, subscapular, and suprailiac skinfold thicknesses, expressed as percentages of the initial values, was significantly greater in the family therapy group than in the conventional treatment group (P = .03, P = .005 and P = .002, respectively), and their physical fitness was significantly better (P < .05). CONCLUSIONS. Family therapy seems to be effective in preventing progression to severe obesity during adolescence if the treatment starts at 10 to 11 years of age.
Review of the satisfaction with life scale
The Satisfaction With Life Scale (SWLS) was developed to assess satisfaction with the respondent's life as a whole. The scale does not assess satisfaction with life domains such as health or finances but allows Ss to integrate and weight these domains in whatever way they choose. Normative data are presented for the scale, which shows good convergent validity with other scales and with other types of assessments of subjective well-being. Life satisfaction as assessed by the SWLS shows a degree of temporal stability (e.g., .54 for 4 yrs), yet the SWLS has shown sufficient sensitivity to be potentially valuable to detect change in life satisfaction during the course of clinical intervention. Further, the scale shows discriminant validity from emotional well-being measures. The SWLS is recommended as a complement to scales that focus on psychopathology or emotional well-being because it assesses an individual's conscious evaluative judgment of his or her life by using the person's own criteria.
Short form 36 (SF36) health survey questionnaire: normative data for adults of working age
OBJECTIVES--To gain population norms for the short form 36 health survey questionnaire (SF36) in a large community sample and to explore the questionnaire's internal consistency and validity. DESIGN--Postal survey by using a booklet containing the SF36 and several other items concerned with lifestyles and illness. SETTING--The sample was drawn from computerised registers of the family health services authorities for Berkshire, Buckinghamshire, Northamptonshire, and Oxfordshire. SAMPLE--13,042 randomly selected subjects aged 18-64 years. MAIN OUTCOME MEASURES--Scores for the eight health dimensions of the SF36. RESULTS--The survey achieved a response rate of 72% (n = 9332). Internal consistency of the different dimensions of the questionnaire was high. Normative data broken down by age, sex, and social class were consistent with those from previous studies. CONCLUSIONS--The SF36 is a potentially valuable tool in medical research. The normative data provided here may further facilitate its validation and use.
The cast-6: development of a short-form of the Children of Alcoholics Screening Test
The 30-item Children of Alcoholics Screening Test (CAST) is shortened to a 6-item scale (CAST-6) using Principal Components Analysis of CAST responses for three distinct samples: outpatient substance abusers, outpatient psychiatric patients, and medical students. The face validity, internal consistency, and discriminatory ability of the CAST-6 are examined. The CAST-6 is judged to compare favorably with the full CAST and to provide a more efficient way to identify adult children of alcoholics.
The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology
BACKGROUND: In 1986, the European Organization for Research and Treatment of Cancer (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. PURPOSE: We report here the results of an international field study of the practicality, reliability, and validity of the EORTC QLQ-C30, the current core questionnaire. The QLQ-C30 incorporates nine multi-item scales: five functional scales (physical, role, cognitive, emotional, and social); three symptom scales (fatigue, pain, and nausea and vomiting); and a global health and quality-of-life scale. Several single-item symptom measures are also included. METHODS: The questionnaire was administered before treatment and once during treatment to 305 patients with nonresectable lung cancer from centers in 13 countries. Clinical variables assessed included disease stage, weight loss, performance status, and treatment toxicity. RESULTS: The average time required to complete the questionnaire was approximately 11 minutes, and most patients required no assistance. The data supported the hypothesized scale structure of the questionnaire with the exception of role functioning (work and household activities), which was also the only multi-item scale that failed to meet the minimal standards for reliability (Cronbach's alpha coefficient > or = .70) either before or during treatment. Validity was shown by three findings. First, while all interscale correlations were statistically significant, the correlation was moderate, indicating that the scales were assessing distinct components of the quality-of-life construct. Second, most of the functional and symptom measures discriminated clearly between patients differing in clinical status as defined by the Eastern Cooperative Oncology Group performance status scale, weight loss, and treatment toxicity. Third, there were statistically significant changes, in the expected direction, in physical and role functioning, global quality of life, fatigue, and nausea and vomiting, for patients whose performance status had improved or worsened during treatment. The reliability and validity of the questionnaire were highly consistent across the three language-cultural groups studied: patients from English-speaking countries, Northern Europe, and Southern Europe. CONCLUSIONS: These results support the EORTC QLQ-C30 as a reliable and valid measure of the quality of life of cancer patients in multicultural clinical research settings. Work is ongoing to examine the performance of the questionnaire among more heterogenous patient samples and in phase II and phase III clinical trials.
Trauma and mental health of children in Gaza
Two principles of communication - co-regulation and framing.
Family environmental and genetic influences on children’s future chemical dependency.
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.
What explains health in persons with visual impairment?
Background
Visual impairment is associated with important limitations in functioning. The International Classification of Functioning, Disability and Health (ICF) adopted by the World Health Organisation (WHO) relies on a globally accepted framework for classifying problems in functioning and the influence of contextual factors. Its comprehensive perspective, including biological, individual and social aspects of health, enables the ICF to describe the whole health experience of persons with visual impairment. The objectives of this study are (1) to analyze whether the ICF can be used to comprehensively describe the problems in functioning of persons with visual impairment and the environmental factors that influence their lives and (2) to select the ICF categories that best capture self-perceived health of persons with visual impairment.
Methods
Data from 105 persons with visual impairment were collected, including socio-demographic data, vision-related data, the Extended ICF Checklist and the visual analogue scale of the EuroQoL-5D, to assess self-perceived health. Descriptive statistics and a Group Lasso regression were performed. The main outcome measures were functioning defined as impairments in Body functions and Body structures, limitations in Activities and restrictions in Participation, influencing Environmental factors and self-perceived health.
Results
In total, 120 ICF categories covering a broad range of Body functions, Body structures, aspects of Activities and Participation and Environmental factors were identified. Thirteen ICF categories that best capture self-perceived health were selected based on the Group Lasso regression. While Activities-and-Participation categories were selected most frequently, the greatest impact on self-perceived health was found in Body-functions categories. The ICF can be used as a framework to comprehensively describe the problems of persons with visual impairment and the Environmental factors which influence their lives.
Conclusions
There are plenty of ICF categories, Environmental-factors categories in particular, which are relevant to persons with visual impairment, but have hardly ever been taken into consideration in literature and visual impairment-specific patient-reported outcome measures.
Vägledning - AKK
Detta material är en vägledning för samtalsledare i lärande nätverk och i
olika utbildningssituationer om AKK - Alternativ och Kompletterande
Kommunikation för barn och personer med kommunikativa funktionsnedsättningar.
Vägledningen är tänkt att fungera tillsammans med två andra dokument. Det ena är ett inspirationsmaterial benämnt Röster om kommunikation. Det andra dokumentet är en kunskapsöversikt inom området AKK.
Webbupplaga
Young children’s understanding of denial
Although a fair amount is known about young children's production of negation, little is known about their comprehension. Here, we focus on arguably the most complex basic form, denial, and how young children understand denial, when it is expressed in response to a question with gesture, single word, or sentence. One hundred twenty-six children in 3 age groups (Ms = 1 year 9 months, 2 years 0 months, and 2 years 4 months) witnessed an adult look into 1 of 2 buckets and then, in response to a question about whether the toy was in there, communicate either something positive (positive head nod, "yes," "it is in this bucket") or negative (negative head shake, "No," "It's not in this bucket"). The youngest children did not search differently in response to any of the communicative cues (nor in response to an additional cue using both gesture and single word). Children at 2 years 0 months searched at above-chance levels only in response to the negative word and negative sentence. Children at 2 years 4 months were successful with all 3 types of cues in both positive and negative modalities, with the exception of the positive sentence. Young children thus seem to understand the denial of a statement before they understand its affirmation, and they understand linguistic means of expressing denial before they understand gestural means.
Young children’s understanding of denial
Although a fair amount is known about young children's production of negation, little is known about their comprehension. Here, we focus on arguably the most complex basic form, denial, and how young children understand denial, when it is expressed in response to a question with gesture, single word, or sentence. One hundred twenty-six children in 3 age groups (Ms = 1 year 9 months, 2 years 0 months, and 2 years 4 months) witnessed an adult look into 1 of 2 buckets and then, in response to a question about whether the toy was in there, communicate either something positive (positive head nod, "yes," "it is in this bucket") or negative (negative head shake, "No," "It's not in this bucket"). The youngest children did not search differently in response to any of the communicative cues (nor in response to an additional cue using both gesture and single word). Children at 2 years 0 months searched at above-chance levels only in response to the negative word and negative sentence. Children at 2 years 4 months were successful with all 3 types of cues in both positive and negative modalities, with the exception of the positive sentence. Young children thus seem to understand the denial of a statement before they understand its affirmation, and they understand linguistic means of expressing denial before they understand gestural means. (PsycINFO Database Record (c) 2014 APA, all rights reserved)
Youth Victimization in Sweden: Prevalence, Characteristics and Relation to Mental Health and Behavioral Problems in Young Adulthood
The present study examines multiple types of victimization simultaneously, their prevalence and characteristics in childhood and adolescence, and it examines the associations between victimization and poly-victimization on the one hand and single and multiple mental health and behavioral problems on the other. The sample consisted of 2,500 Swedish young adults (20-24 years) who provided detailed report of multiple types of lifetime victimization and current health and behaviors via an interview and a questionnaire. Results showed that it was more common to be victimized in adolescence than in childhood and more common to be victimized repeatedly rather than a single time, among both males and females. Males and females were victimized in noticeably different ways and partially at different places and by different perpetrators. With regard to mental health and behavioral problems, anxiety, post-traumatic stress, self-harm, and criminality were clearly overrepresented among both males and females who had experienced any type of victimization. Poly-victimization was related to single and multiple mental health and behavioral problems among both males and females. We conclude that professionals need to conduct thorough evaluations of victimization when completing mental health assessments among troubled youths, and that youth might benefit from the development of interventions for poly-victimized youth.
Ändlös omsorg och utmätt hälsa – föräldraskapets paradoxer när ett vuxet barn har långvarig psykisk sjukdom. Akad. avh.
Avhandlingens övergripande syfte är att fördjupa kunskapen om att vara förälder till vuxet barn med långvarig psykisk sjukdom. Delstudiernas speciella syften är:
Att beskriva hur mammor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag.
Att beskriva hur pappor till vuxet barn med långvarig psykisk sjukdom upplever sin vardag
Att beskriva hur förälder till vuxet barn med psykisk sjukdom uppfattar den psykiatriska vården.
Att undersöka en grupp mammor och pappor till vuxet barn med långvarig psykisk sjukdom i Sverige och deras hälsorelaterade lisvkvalitet i förhållande till en normalpopulation, deras självskattade symptom på ångest, depression och belastning samt erfarenheter av möten med den psykiatriska vården.
A treatment outcome study of bereavement groups for children
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].
Family environmental and genetic influences on children’s future chemical dependency
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.
Coping, stress resistance, and growth: Conceptualizing adaptive functioning
ABSTRACT analyze the coping process, emphasizing the relevance of coping research to understanding adaptive functioning more generally / begin by considering general conceptualizations of coping, and present an integrative conceptual approach / describe the relation between different coping strategies and adaptive functioning / present 2 models of adaptive functioning—reflecting both stress resistance and crisis growth—that depend on coping as a central mechanism / highlight key issues that refine our general understanding of coping and adaptation.
Rehabilitering av människor med psykiska funktionshinder.
SOS-syndromet - sorg, oro och samvetsförebråelser hos anhöriga till personer med åldersdement beteende, rapport 24, Projektet Äldre i samhället - förr, nu och i framtiden
The Child Behavior Rating Scale- Preschool version
The Children's Depression Inventory (CDI).
The Children's Depression, Inventory (CDI).
Caregiving
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.
A World of Their Own Making:Myth Ritual and the Quest for Family Values
Our whole society may be obsessed with "family values," but as John Gillis points out in this entertaining and eye-opening book, most of our images of "home sweet home" are of very recent vintage. A World of Their Own Making questions our idealized notion of "The Family," a mind-set in which myth and symbol still hold sway. As the families we live with become more fragile, the symbolic families we live by become more powerful. Yet it is only by accepting the notion that our ritual, myths, and images must be open to perpetual revision that we can satisfy our human needs and changing circumstances.
Beck Depression Inventory: Second Edition Manual
The BDI-II represents a highly successful revision of an acknowledged standard in the measurement of depressed mood. The revision has improved upon the original by updating the items to reflect contemporary diagnostic criteria for depression and utilizing state-of-the-art psychometric techniques to improve the discriminative properties of the instrument. This degree of improvement is no small feat and the BDI-II deserves to replace the BDI as the single most widely used clinically administered instrument for the assessment of depression.
[출처] Beck depression inventory -II|작성자 Mirr
Caught in the middle? Occupancy in multiple roles and help to parents in a national probability sample of Canadian adults. Research Paper No. 4
This article considers, for a Canadian national probability sample of middle-aged women and
men, the question of how typical is the experience of being "caught in the middle" between being
the adult child of elderly parents and other roles. Three roles are examined: adult child, employed
worker, and parent (and a refinement of the parent role, being a parent of a co-resident child).
Occupancy in multiple roles is examined, followed by an investigation of the extent to which adults
in various role combinations actually assist older parents and whether those who provide frequent
help are also those "sandwiched" by competing commitments. The majority of middle-aged children
do not provide frequent help to parents. Notably, the highest proportion of daughters who assist
elderly parents are those in their fifties whose children are no longer co-resident. For both sons and
daughters, being "caught in the middle" is far from a typical experience in this cross-sectional
analysis.
Child politics. Dimensions and perspectives
The article analyses the different strands of public concern regarding children in the course of the 20th century, and the political process and the ideological constellation which led up to the UN Convention on the Rights of the Child. The ratification of the Convention and its political effects in northwestern Europe are analysed. Finally, a set of hypotheses are presented about likely determinants of the impact of the Convention in different parts of the world.
Childhood bereavement: distress and long term sequelae can be lessened by early intervention
Coping with chronic diseases
De gamla flygande holländarna
Det handikappade barnet i vuxenvärlden. Om möjligheterna att mötas
Avhandling
Disability Politics. Understanding our past, changing our future
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.
Disability Rights and the denial of Young Carers. The dangers of zero-sum arguments
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.
Disability Rights and the denial of Young Carers. The dangers of zero-sum arguments
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.
En riktig människa
Att vara så övergiven, så oskyddad, så utsatt som detta barn som här beskrivs, ter sig för de flesta människor helt obegripligt. Varför såg ingen, varför förstod ingen - hur kunde detta fortgå?
Denna bok är en upprättelse - både för den kvinna som skrivit boken - och för andra som kämpar med känslan att "inte vara som andra" och mot människors oförmåga att förstå.
Professor Christopher Gillberg, som är Gunilla Gerlands läkare påpekar i sitt förord att boken handlar om "den hårfina gränsdragningen mellan friskt och sjukt, normalt och onormalt, icke diagnos - diagnos och om dolda handikapp". Han säger också att "Gunilla Gerlands eget språk öppnar många fler dörrar till förståelse än någon psykiaters fackjargong".
Ett liv att leva. Om familjer, funktionshinder och vardagens villkor
Factors associated with life satisfaction among sample of persons with neurotrauma
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.
Familje Skyldigheter i Europa
Family characteristics as mediator of the influence of problem drinking and multiple risk status on child mental health
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.
Group work for bereaved children: a team approach
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.
Help for bereaved children: a preventative approach
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.
Hverdagen med demens - billeddannelser og hverdagserfaringer i kulturgerontologisk perspektiv.
I sinnenas värld. Luktsinnet - Lukt och smak
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.
Jag tar en dag i sänder - om ålderspensionerade anhörigvårdare
Omsorgens skiftningar - Begreppet, vardagen, politiken, forskningen. R. Eliasson
Kritisk utredningsmetodik
Lapphemmen i Norrbotten
Manual for the Beck depression inventory
Models for understanding adolescent coping with bereavement
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.
Mot alla odds. Barn till narkotikamissbrukare berättar om sin uppväxt
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.
Möten i Gryningen: erfarenheter från psykosocialt behandlingsarbete med späd- och småbarnsfamiljer
När mamma eller pappa dricker
Occupational hearing loss, coping and family life
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.
Om barns rätt och barns bästa
Om barns rätt och barns bästa
Om omsorg och omsorgsforskningen
Omsorgens skiftningar. Begreppet, vardagen, politiken, forskningen. R. Eliasson
Omsorgsrationalitet. Reflexioner över ett begrepps karriär
Omsorgens skiftningar: Begreppet, vardagen, politiken, forskningen. R. Eliasson
Perceived social support from friends and perceived social support from family scales revised.
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.
Pictures as Communication Symbols for Students with Severe Intellectual Disability
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.
Pictures as Communication Symbols for Students with Severe Intellectual Disability
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.
Replication of the Stockholm Adoption Study of alcoholism. Confirmatory cross-fostering analysis
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.
Stress experineced by informal caregivers. On conflicting demands in every day life
Svensk forskning om fosterbarnsvård: en översikt
The challenge model. Working with strengths in children of substance abusing parents
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?'
Att vara anhörig till en närstående med demenssjukdom. En jämförelse mellan storstad och landsbygd.
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
Attention-deficit hyperactivity disorder (ADHD), substance use disorders, and criminality: a difficult problem with complex solutions.
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.
Attention-deficit hyperactivity disorder (ADHD), substance use disorders, and criminality: a difficult problem with complex solutions.
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.
Conditions for relatives´ involvement in nursing homes
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.
Coping as a caregiver: A question of strain and its consequences on life satisfaction and health-related quality of life
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.
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
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.
Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders
BACKGROUND: In a previous study, the objective burden of informal caregiving to
patients with psychotic disorders amounted to 22 hours/week, and the subjective
burden was huge with predominately anxiety and depression as main symptoms. In
this study, determinants of the informal caregiving burden are analyzed to find
foci for interventions to ease the size of burden.
METHODS: Patients with psychotic disorders (n = 107) and their informal
caregivers (n = 118) were included. They were assessed with a comprehensive
battery of rating scales including patient and caregiver characteristics as well
as the amount and quality of health-care provision.
RESULTS: A multiple linear regression analysis showed that the subjective burden
was significantly lower when patients had higher levels of functioning and when
the health status of the informal caregivers was good. No significant
determinants were found for the objective burden, but an association was found
between a higher socioeconomic status of the caregivers and the amount of money
provided for the patient. An association was also found between a positive
perception of caregiving and more hours spent on caregiving.
CONCLUSION: The functioning level of the patients was the main determinant of the
subjective burden of informal care. For the objective burden, no main determinant
was found.
Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial
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.
Inte bara Anna : asperger och stress
Många hade försökt förstå sig på Anna. Men hon hann bli femton år innan någon förstod att hon hade Aspergers syndrom. Att leva med asperger kan vara påfrestande och man stöter på fler hinder i vardagen än andra. Det kan leda till stress och så småningom utbrändhet. Och Anna är långtifrån ensam om sina upplevelser. När Anna var sjutton år kom hon till sist inte iväg till skolan. Här börjar författaren Elisabet von Zeipel och Anna en spännande "resa" som vi får följa med på.
Det här är en fackbok i berättelsens form. Anna har farit illa men trots det är det en hoppfull bok. Utbrändhet kan förebyggas när vi sänker stressen för personer med asperger.
The sense of security in care--Relatives' Evaluation instrument: its development and presentation
CONTEXT: Relatives' sense of security in their family members' palliative home
care is important, and a valid and reliable instrument is needed to measure this.
OBJECTIVES: The aim of this article is to report the development, structure, and
psychometric properties of a new instrument, the Sense of Security in
Care--Relatives' Evaluation (SEC-R), in palliative home care.
METHODS: Instrument development was based on a previous study and review of the
literature; 213 relatives (55% women) of patients in palliative home care were
recruited (response rate 73%) and participated in a structured interview based on
a questionnaire. Principal component analysis (PCA) was used to identify
subscales. The construction was tested in correlation with other scales and
questions representing concepts expected to be related to sense of security in
care. RESULTS: The PCA resulted in three subscales, namely care interaction, mastery
and patient situation, which had an explained variance of 53%. Internal
consistency of the subscales ranged from 0.76 to 0.78. The final instrument
comprises 17 items. The scales were associated with the quality-of-care process
and the relatives' situation, perceived health, quality of life, stress, general
sense of security, and general sense of security in care.
CONCLUSION: The SEC-R provides a three-component assessment of palliative home
care settings using valid and reliable scales associated with other concepts. The
SEC-R is a manageable means of assessment that may contribute to quality-of-care
measures and to further research on relatives' sense of security in care.
A Long-Term Follow-up Study of a Randomized Controlled Trial of Mother-Infant Psychoanalytic Treatment: Outcomes on Mothers and Interactions
An earlier randomized controlled trial (RCT) compared 80 mother-infant dyads in a Stockholm sample. One had received mother-infant psychoanalytic treatment [mother-infant psychoanalytic therapies (MIP) group], and the other received Child Health Center care (CHCC group). Effects were found on mother-reported depression and expert-rated mother-infant relationship qualities and maternal sensitivity. When the children were 412 years, the dyads were followed up with assessments of the children's attachment representations, social and emotional development, and global functioning, and the mothers' psychological well-being and representations of the child as well as the mother-child interactions. We gathered data from 66 cases approximately 312 years' posttreatment. All scores involving the mothers had now approached community levels. We found effects on maternal depression in favor of MIP, but no other between-group differences. The MIP treatments seemed to have helped the mothers to recover more quickly on personal well-being, to become more sensitive to their babies' suffering, and to better support and appreciate their children throughout infancy and toddlerhood. If so, this would explain why the MIP children had a better global functioning and were more often "OK" and less often "Troubled" at 412 years.
Anhöriga till vuxna personer med psykisk ohälsa: En kunskapsöversikt om betydelsen av stöd. Kunskapsöversikt 2015:1
Att vara anhörig till en person med psykisk ohälsa kan vara förenat med omfattande svå-
righeter, men också med empati och kärlek till att vilja hjälpa och stödja sin närstående.
Kontakt och stöd från personal inom vård och omsorg och andra anhöriga med liknande
erfarenheter kan vara betydelsefullt för att hantera situationen. Trots goda intentioner i
svenska styrdokument framkommer i flera utredningar och forskning, att anhörigas behov
av kontakt och anpassat stöd från vård och omsorg inte alla gånger tillgodoses i tillräcklig
omfattning.
Syftet med föreliggande kunskapsöversikt är därför att presentera exempel på stödjande
insatser för vuxna anhöriga (18 år eller äldre), till vuxna personer (18 år eller äldre) med
psykisk ohälsa och den dokumenterade betydelse och/eller effekt som stödet kan ha för
anhöriga. Det skall tilläggas att syftet inte är att jämföra eller dra slutsatser om vilka
stödinsatser som är mest betydelsefulla eller effektiva.
Litteratursökning av svensk och internationell forskning och utvecklingsarbeten genomfördes
i olika databaser. Sökningen omfattade aspekter som: psykisk ohälsa, anhöriga,
stöd och betydelse samt effekt. Efter en första granskning av 854 studier bedömdes slutligen
54 vara relevanta för kunskapsöversiktens syfte och frågeställningar. Av dessa har 18
studier genomförts i Sverige. Studierna är genomförda med såväl kvantitativa som kvalitativa
metoder.
Vid tematisk analys av studierna framkom två huvudområden. Det ena omfattade stöd
från personal inom hälso- och sjukvård och socialtjänst. Det delades in i sex delområden;
psykopedagogiska interventioner, telefonrådgivning i grupp, webbaserat stöd, samtal och
bemötande, delaktighet i vård och omsorg, samt vård och omsorg till den närstående med
psykisk ohälsa. Det andra huvudområdet omfattade stöd från personer med egen erfarenhet
som anhörig till person med psykisk ohälsa, omfattande tre delområden; ömsesidiga
stödgrupper, individuella samtalsträffar och stöd via telefon.
Insatserna hade genomförts i grupp eller individuellt likväl som direkt eller indirekt stöd,
där indirekt stöd främst riktades till den närstående med psykisk ohälsa, vilket i sin tur
kan underlätta situationen för anhöriga. Innehållet i insatserna hade stora variationer.
Några återkommande aspekter var information, utbildning, rådgivning, problemlösning
och stresshantering, delaktighet i vård och omsorg, bemötande från personal och erfarenhetsutbyte
med andra anhöriga. Resultatet indikerar att stödinsatserna på många olika
sätt kan vara betydelsefulla för anhöriga själva, såväl fysiskt, psykiskt som socialt, men
också av betydelse för att hantera situationen och på så sätt stödja sin närstående med
psykisk ohälsa. Psykopedagogiska interventioner och ömsesidiga stödgrupper som leds av
andra anhöriga var de insatser som omfattade flest studier, såväl systematiska forsknings-
översikter som enskilda studier. Resultaten av dessa indikerade minskad belastning, ökad
kunskap om sjukdomen och behandling, samt ökad möjlighet att hantera situationen.
8
Några studier indikerade också att inställningen till den närstående med psykisk ohälsa
hade förändrats, samt att socialt stöd i grupp var betydelsefullt för att minska social isolering
och känsla av ensamhet. Utvärderingarna hade i nästan alla studier genomförts inom
ett år efter insatsen avslutats, vilket medför betydande begränsningar i vilken långtidseffekt
insatserna haft. Insatserna genomfördes av olika organisationer och personer, som
landsting, kommun, intresseorganisationer, privat och projekt under avgränsad tid. I
några studier genomfördes de i samarbete mellan flera organisationer.
Resultatet i kunskapsöversikten är inte en total kartläggning av forskning som genomförts
om stöd för anhöriga till personer med psykisk ohälsa. Det är exempel på olika former av
stöd och där det finns utvärdering som beskriver dess betydelse. Det finns säkerligen fler
studier som beskriver detta område som inte inkluderats i resultatet, både i Sverige och
internationellt. Allt som framkommer i resultatet är inte överförbart eller generaliserbart
i andra sammanhang än där det genomförts. Detta på grund av metodologiska begränsningar
i vissa studier eller att det finns geografiska, kulturella eller andra aspekter som
begränsar resultatens överförbarhet.
Utifrån resultatet av kunskapsöversikten och från anhörigas erfarenheter i andra sammanhang,
kan följande områden ses som betydelsefulla att beakta vid förändring och
utveckling av stöd till anhöriga:
➢ Information på samhällsnivå; information om var vård för personer med psykisk
ohälsa och stöd för anhöriga finns att tillgå.
➢ Strukturerade former av anhörigstöd; olika former av
psykopedagogiska insatser, ömsesidiga stödgrupper, webbaserat
stöd och individuellt samtalsstöd.
➢ Bemötande från personal inom vård och omsorg.
➢ Anhörigas delaktighet i vård och omsorg.
➢ Beaktande av sekretessen ur anhörigas och deras närståendes
perspektiv såväl som ur vård- och omsorgspersonals perspektiv.
➢ Vård och omsorg av den närstående som också beaktar anhörigas behov av trygghet.
➢ Att utveckling sker i nära samarbete mellan vård och omsorg, samt intresseorganisationer
så att allas kompetens och erfarenhet tas tillvara.
Förhoppningen är att dessa exempel på stöd som framkommit i kunskapsöversikten kan
bidra till kunskap och inspiration för utveckling och förändring av stödjande insatser för
vuxna anhöriga som har en vuxen närstående med psykisk ohälsa. Det är också betydelsefullt
att det ges förutsättningar till fortsatt dokumentation och utvärdering av insatser
som andra kan ta del av.
Anhörigstöd. Information till anhörig-, brukar- och patientorganisationer
Skriften vänder sig till ideella organisationer för anhöriga, brukare och patienter. Den kan ge stöd i att formulera och utveckla organisationens syn på anhörigstöd enligt 5 kap. 10 § socialtjänstlagen, vad bestämmelsen betyder för enskilda och hur man kan arbeta vidare för de anhörigas bästa.
Antologin: Att se barn som anhöriga - om relationer, interventioner och omsorgsansvar
Barn föds anhöriga och växer upp som anhöriga till föräldrar och syskon och andra viktiga personer i familjen. I dessa relationer har minderråriga barn sin trygghet och tillitsbas att bygga sitt liv på. Omvänt får de svårigheter som drabbat föräldrar eller syskon konsekvenser också för barn. Vilka är dessa konsekvenser och hur kan vi förstå barns anhörigskap? Vilka roller kan barnet ha i sin familj? När behöver barn och föräldrar stöd och hur?
I denna antologi försöker forskare som deltar i eller är inbjudna till det svenska forskarnätverket "Barn som anhöriga" att utifrån aktuell forskning undersöka, beskriva och förklara innebörden i att barn är anhöriga. Olika teman lygfs såsom barns positoioner i familjen där utsatthet och beroende i relation till föräldrar beskrivs men också barns aktiva agerande i relation till föräldrar och syskon belyses.
Ett sådant exempel är när barn blir omsorgsgivare till syskon eller föräldrar, vilket också beskrivs i en internationell utblick. Vidare beskrivs hur många barn som är anhöriga i de sammanhang som hälso- och sjukvårdslagen omfattar och hur det går för dem i skolan. Ett avsnitt tar upp aktuell kunskap om befintliga interventioner för stöd till barn och föräldrar. Även stöd till anhöriga syskon och forskning om om våld i familjen belyses.
Boken vänder sig till studerande på sjuksköterske-, läkar-, socionom- och lärarprogrammet samt övriga proffessionsutbildningar som i sin yrkesverksamhet möter anhöriga barn och deras föräldrar i behov av stöd. Den ä räven avsedd för beslutsfattare, verksamhetsutvecklare, enskilda personer och idéburna organisationer som söker kunskap om barns livsvillkor som anhöriga.
Avhandling om anhörigas delaktighet vid kommunala äldreboenden
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.
Barndom och föräldraskap i missbrukets skugga. Barn, ungdomar och föräldrar berättar om vardagsliv och behov av stöd när föräldern har missbruksproblem
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.
Barndom och föräldraskap i missbrukets skugga. Barn, ungdomar och föräldrar berättar om vardagsliv och behov av stöd när föräldern har missbruksproblem
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.
Disability pension in young adulthood among former child welfare clients. A national cohort study.
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).
Does intensive multimodal treatment for maternal ADHD improve the efficacy of parent training for children with ADHD? A randomized controlled multicenter trial
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).
Du, jag och något att tala om - om kommunikation och kommunikationshjälpmedel för och med barn och ungdomar med flerfunktionsnedsättning
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
Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial
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.
En god start i livet. Barnet med flera funktionsnedsättningar, familjen och den service som erhålls
Facilitating Internalization: The Self-Determination Theory Perspective
Self-determination theory (Deci & Ryan, 1985) posits that (a) people are inherently motivated to internalize the regulation of uninteresting though important activities; (b) there are two different processes through which such internalization can occur, resulting in qualitatively different styles of self-regulation; and (c) the social context influences which internalization process and regulatory style occur. The two types of internalization are introjection, which entails taking in a value or regulatory process but not accepting it as one's own, and integration, through which the regulation is assimilated with one's core sense of self. Introjection results in internally controlling regulation, whereas integration results in self-determination. An experiment supported our hypothesis that three facilitating contextual factors—namely, providing a meaningful rationale, acknowledging the behaver's feelings, and conveying choice—promote internalization, as evidenced by the subsequent self-regulation of behavior. This experiment also supported our expectation that when the social context supports self-determination, integration tends to occur, whereas when the context does not support self-determination, introjection tends to occur.
Family Issues in Later-Life Depression
Fortbildning av förskolekonsulenter i familjeorienterad habilitering: process och utfall
Eurocarers Research Working Group and Strategy, .Eurocarers AGM, 3rd September
Föräldrars erfarenhet av kontakt med psykiatrisk vård - behov, upplevelser och önskemål, en pilot studie
Syfte med föreliggande studie var att identifiera centrala kategorier och dimensioner som beskriver: "Föräldrars, till schizofrena barn, erfarenhet av kontakten med psykiatrisk vård". Beskrivningen bygger på föräldrars erfarenhet - behov, upplevelser och önskemål, av kontakten i samband med barns sjukdom. Barn är i studien är inte ett åldersrelaterat begrepp utan beskriver förhållandet till föräldern. Den metod studien bygger på är inspirerad av "Grounded theory" och har genomförts med ostrukturerade intervjuer. Fyra intervjuer med föräldrar till barn med en psykossjukdom har analyserats. Två män och fyra kvinnor ingår i studien, de representerar erfarenhet av kontakt av psykiatrisk vård från tre sjukvårsområden inom Stockholms läns landsting och kontakten omfattar 5-16 år. Resultatet visar såväl positiv som negativ erfarenhet av kontakten. De behov i kontakten som framträder är - behov av samarbete med psykiatrisk vård, - behov av att bli omhändertagna och - behov av kontakt med människor i samma situation. De upplevelser i kontakten som framkommer är - upplevelser av samarbete, - upplevelser av bristande samarbete - upplevelser av att bli omhändertagna. - upplevelser av dåligt bemötande, upplevelser av att bli skuldbelagda och - upplevelser av bristande kontinuitet i vården. De önskemål på kontakten som framkommer är - önskemål om samarbete, - önskemål om metoder för gott omhändertagande, - önskemål om behandlingsinriktning, - önskemål om att ej bli skuldbelagda, - önskemål om anhörigutbildning och önskemål om samarbete med IFS -Intresseföreningen för schizofreni eller andra psykotiska sjukdomar.
Handikappreformen. Årsrapport 1994
Socialstyrelsen följer upp och utvärderar 1994:11.
Home environments of mothers with mental retardation
A prospective study of 38 mothers with IQs less than 75 and 27 mothers with IQs over 85 who were also low income was conducted. This study was designed to distinguish between children's developmental risk associated with maternal disability and risk related primarily to poverty. Findings from administration of the HOME inventory showed that mothers with intellectual limitations had significantly lower scores, indicating greater developmental risk for their children due to environmental deprivation. Most of the variance between groups was found on the interaction subscale. This suggests that strategies focused on interaction will be beneficial in assisting mothers with intellectual limitations in raising their children.
Individualization and Institutionalization of Childhood in Today´s Europe
Low level of response to alcohol as a predictor of future alcoholism
Abstract
OBJECTIVE:
As part of a search for measurable attributes of an individual that might be related to the risk of alcoholism, the author's group previously compared 227 sons of alcoholics and 227 matched comparison subjects at the age of about 20 years. Forty percent of the men at high risk for alcoholism and less than 10% of the comparison subjects demonstrated a low intensity of response to alcohol challenge. This article reports the results of the follow-up of the first half of this study group almost a decade later.
METHOD:
Of the men who had been tested at about age 20, 223 were about age 30 at this evaluation, which included personal and resource-person interviews, record searches, urine toxicology screens, and blood level markers of drinking.
RESULTS:
A low level of response to alcohol at age 20 was associated with a fourfold greater likelihood of future alcoholism in both the sons of alcoholics and the comparison subjects. Fifty-six percent of the sons of alcoholics with the lesser alcohol response developed alcoholism during the subsequent decade, compared to 14% of the men in this group who had highly sensitive alcohol responses. Neither family history of alcoholism nor response to alcohol predicted any other psychiatric diagnoses over the subsequent decade, and neither was a significant predictor of any other substance use disorder.
CONCLUSIONS:
In a heavy-drinking society, a lower sensitivity to modest doses of alcohol is associated with a significant increase in the risk of future alcoholism, perhaps through increasing the chances that a person will drink more heavily and more often.
Family caregivers' assessments of caring for a relative with dementia: a comparison of urban and rural areas
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.
Family caregivers´ assessments of caring for a relative with dementia: a comparison of urban and rural areas
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.
Föräldraskap hos vuxna med ADHD eller Autismspektrumtillstånd - konsekvenser för barnet samt metoder för stöd Systematisk kunskapsöversikt
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?
Health and wellbeing in informal caregivers and non-caregivers: a comparative cross-sectional study of the Swedish general population
BACKGROUND: Informal caregiving by relatives is a great resource for individuals
as well as for society, but the caregiving role is associated with health
problems for the caregiver. This study aimed to compare caregivers' self-rated
health, number of recent days with poor health and psychological wellbeing with
that of non-caregivers in a general Swedish population.
METHODS: From 2004 to 2013, 90,845 Swedish people completed a postal
questionnaire about their health, number of recent days with poor health during
last month, psychological wellbeing and if they were performing caregiving or
not. Descriptive statistics, chi-square analysis, ANOVA, logistic regressions and
negative binomial regression models were used to investigate associations between
being a caregiver or not and health and wellbeing. Negative binomial regression
was used to assess the relation between caregiver status and recent days with
poor health or functioning.
RESULTS: Eleven percent reported having a caregiving role. Caregivers reported
poorer self-rated health compared to non-caregivers, also in adjusted models;
odds ratio (OR): 1.07 with a 95% confidence interval (CI): 1.01-1.13. Caregivers
also reported lower psychological wellbeing compared to non-caregivers; OR: 1.22,
CI: 1.15-1.30. Caregiving status was associated with more recent days with poor
physical health and more recent days with poor mental health.
CONCLUSIONS: This study suggests that caregivers have worse perceptions in
self-rated health and psychological wellbeing compared with non-caregivers,
indicating that the role of caregiver is adversely associated with health. This
association also appears in terms of reporting days of poor health in the last
month. The underlying mechanism of these associations, including the potential
detrimental health effects of being a caregiver, needs to be investigated in
longitudinal studies.
Holocaust Icons: Symbolizing the Shoa in History and memory
The Holocaust has bequeathed to contemporary society a cultural lexicon of intensely powerful symbols, a vocabulary of remembrance that we draw on to comprehend the otherwise incomprehensible horror of the Shoah. Engagingly written and illustrated with more than forty black-and-white images, Holocaust Icons probes the history and memory of four of these symbolic relics left in the Holocaust's wake.
Jewish studies scholar Oren Stier offers in this volume new insight into symbols and the symbol-making process, as he traces the lives and afterlives of certain remnants of the Holocaust and their ongoing impact. Stier focuses in particular on four icons: the railway cars that carried Jews to their deaths, symbolizing the mechanics of murder; the Arbeit Macht Frei ("work makes you free") sign over the entrance to Auschwitz, pointing to the insidious logic of the camp system; the number six million that represents an approximation of the number of Jews killed as well as mass murder more generally; and the persona of Anne Frank, associated with victimization. Stier shows how and why these icons—an object, a phrase, a number, and a person—have come to stand in for the Holocaust: where they came from and how they have been used and reproduced; how they are presently at risk from a variety of threats such as commodification; and what the future holds for the memory of the Shoah.
In illuminating these icons of the Holocaust, Stier offers valuable new perspective on one of the defining events of the twentieth century. He helps readers understand not only the Holocaust but also the profound nature of historical memory itself.
Hur bedömer man behov som kolliderar? En kvalitativ vinjett- och inervjustudie om biståndshandläggares hantering av etiska dilemman i ärenden där makar har olika behov och önskemål
Det övergripande syftet med denna studie är att genom undersökning och analys söka en
förståelse för hur individens självbestämmande beaktas och hur intressemotsättningar mellan
makar hanteras av några av Stockholms stads biståndshandläggare. Studien fokuserar på
intressemotsättningar i form av att den ena maken/makan vill bo kvar hemma medan den
andra maken/makan inte orkar med den påfrestning det innebär att ha en vårdkrävande
make/maka i hemmet. Studien innefattas av tio av Stockholms stads biståndshandläggares
ageranden och reflektioner kring de etiska dilemman som uppstår i ärenden där makars behov
och/eller åsikter om stödinsatser kolliderar. Syftet kan benas upp i följande övergripande
frågeställningar:
- Hur reflekterar handläggare kring självbestämmande för en hjälpbehövande äldre
person och kring stöd till maken/makan?
- Hur reflekterar handläggare kring möjliga ageranden då den äldre personen och
dennes makes/makas åsikter går isär?
- Hur uppfattar biståndshandläggare handlingsutrymmet för att kunna stödja båda den
äldre och dennes make/maka?
Relations among maternal stress, cognitive development and the early intervention in middle- and low-SES infants with developmental disabilities.
Reports of Health Workers from Six Australian Communities on Aged People's Evaluation of Health Services
Resources and Strategies: How Parents Cope with the Care of a Disabled Child
This review has considered the ways parents cope with the chronic strain and daily stressors associated with caring for and bringing up a disabled child. The review has been structured around key concepts from the process model of stress and coping. Coping resources--both personal and socio-ecological--have been described, and the notion of vulnerability when resources are not available has been considered. It is only recently that research has turned to look at the coping strategies parents use. The review drew on research using a variety of methodologies to demonstrate the range of strategies used by parents. The relationship between coping strategies and adjustment was explored, although certain methodological difficulties impede firm conclusions being drawn. Finally, the review examined whether the process model of stress and coping could be usefully operationalised to inform intervention practices with families caring for a disabled child.
Self-report measures of family functioning: extensions of a factorial analysis
A factor analysis of four commonly used self-report measures of family functioning (Bloom, 1985) yielded 15 5-item factors. Five of these item sets have now been revised and strengthened. These modifications were undertaken because a review of the literature has revealed that the results of the factor analysis are being increasingly used in family studies. The rationale and description of the revisions of the factor item sets are presented. Psychometric analysis of the revised factors suggests that factor scores are highly reliable as well as stable over time. In addition to presenting comprehensive reliability data, this article provides information regarding factor score intercorrelations and structure, as well as a commentary on the factors themselves.
Smärtkraft : Psykisk sjukdom i familjen, upplevelser och hjälpbehov
Hur är det att vara anhörig till en psykiskt sjuk människa? Boken är ett kritiskt inlägg i debatten mot fantasilöshet och byråkrati i vården, men författaren, själv anhörig, ger också många positiva förslag på goda samarbetsformer som underlättar tillvaron för de drabbade och deras anhöriga.
Socialpolitik i verkligheten. De handikappade och försäkringskassan
Socialpolitiken i verkligheten beskriver försäkringskassans sätt att tillämpa reglerna om handikappersättning för en grupp handikappade som under senare delen av 80-talet ansökte om ersättning. I centrum för studien står å ena sidan försäkringskassan - den myndighet som har att bereda och besluta i ärenden rörande handikappersättningen - och å andra sidan de handikappade själva med sina sociala rättigheter till ersättning för de extra stödbehov och de merutgifter som förorsakas av deras funktionsnedsättning.
Hetzler analyserar bl a de skillnader som kan konstateras i bedömningen av likartade ärenden, vilket visar på olika "kulturmönster" hos kassorna. Dessa skillnader ger varierande konsekvenser för de handikappade och skapar osäkerhet vad gäller deras rättssäkerhet. I en särskild studie av hur kvinnliga handikappade behandlas kan författaren påvisa systematisk diskriminering på grund av könstillhörighet. Männen tillerkänns ersättning i högre utsträckning än kvinnor, och därtill högre ersättning - också i likartade eller identiska fall.
Sex till sju år efter det att det första beslutet i deras ärende fattats i försäkringskassan kontaktades de handikappade i en uppföljande enkätundersökning. Resultatet av enkätundersökningen ger flera viktiga bidrag till förståelsen av de handikappades situation i samhället och deras syn på sig själva som individer.
Spouses´ experiences of living with a partner with Alzheimer´s disease
Life situations and the care burden for stroke patients and their informal caregivers in a prospective cohort study
BACKGROUND: The purpose of this study was to analyse whether the parallel life
situation between stroke patients and their informal caregivers (dyads) shown in
cross-sectional studies prevails also in a longitudinal perspective.
METHODS: A total of 377 Swedish stroke patients, aged ≥ 65 years, and their 268
informal caregivers were followed from hospital admission and one year on.
Analyses were based on patient interviews, functional ability (MMSE) score,
Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD)
score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity
score. Similar information was obtained by postal questionnaires from informal
caregivers, also including information on the nature and amount of assistance
provided and on Caregiver Burden (CB) score.
RESULTS: Before index admission informal caregivers provided care on average 5 h
per week and after discharge 11 h per week (P < 0.0001). Support volume was
associated with patient sex (more for men), low patient's functional ability, low
received municipal social service support, closeness of patient-caregiver
relation, and short distance to patient's home. Significant positive associations
within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score
(P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient's
age, sex, functional ability, and patient-caregiver relationship. CB score
increased with amount of informal caregiver support, patient's age, and with low
functional ability and low amount of municipal social service support. All these
associations were constant across time.
CONCLUSIONS: There was an association within the dyads regarding anxiety score,
NHP score, and activity score. CB score was generally high.
The experience of burden in the care of elderly persons with dementia
The influence of temperament and mothering on attachment and exploration: an experimental manipulation of sensitive responsiveness among lower-class mothers with irritable infants
6-month-old infants selected on irritability shortly after birth and their mothers were randomly assigned to 2 intervention and 2 control groups to test the hypothesis that enhancing maternal sensitive responsiveness will improve quality of mother-infant interaction, infant exploration, and attachment. The intervention lasted 3 months and ended when the child was 9 months of age. When infants were 9 months of age, intervention group mothers were significantly more responsive, stimulating, visually attentive, and controlling of their infant's behavior than control group mothers. Intervention infants had higher scores than control infants on sociability, self-soothing, and exploration, and they cried less. Quality of exploration also improved, with intervention infants engaged in cognitively sophisticated kinds of exploration more than control infants. At 12 months of age, significantly more intervention group dyads were securely attached than control group dyads.
Treatment of Parenting Behavior With a Psychostimulant – a Case-Study of an Adult With Attention-Deficit Hyperactivity Disorder
Describes the case of a 28-yr-old woman whose 6-yr-old son was diagnosed with attention deficit hyperactivity disorder (ADHD). Behavioral parent training (BPT) was recommended for the mother, followed by medication for the child. However, during BPT the mother was also diagnosed with ADHD. The mother was evaluated using a double-blind procedure with placebo and methylphenidate. The ability of the mother to monitor and manage her son's behavior was assessed using a self-monitoring form and daily interviews. Methylphenidate improved the mother's ability to manage her son's behavior consistently and reduced the severity of her other ADHD symptoms, including fidgety and impulsive behavior. The mother's perceptions of her parenting skills also improved. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Who cares for young carers?
How much do we know of young carers - that is, children under 18 who provide primary care for sick, disabled, or elderly relatives in the home, usually their own parents?1 Meredith suggested that health professionals have failed to identify such children and have shown interest in them only when the possibility of psychological or physical disorders has been raised.2
Small studies have suggested that there are at least 10 000 young carers in Britain.3,4 Recent research has, however, rejected the usefulness of such data, concentrating instead on the qualitative impact that caring may have on a child's health, psychosocial development, and opportunities.*RF 5-7*
A substantial obstacle to addressing the needs and concerns of young carers has been a lack of awareness of their existence. Providers of services - whether health, education, or social services - have consistently failed to identify young carers. As one young carer said, "You can't picture a child picking up an adult, getting them on to the stair lift, taking them up, bathing them. If you can't picture it, it doesn't happen."8
Att lära sig leva med förvärvad hörselnedsättning sett ur parperspektiv – om anpassningsstrategiers funktionella och sociala innebörder
Doktorsavhandling
Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset.
OBJECTIVE: To explore and describe persons with stroke and their caregivers'
restrictions in participation in everyday occupations, i.e. occupational gaps,
3-6 months post-stroke, in relation to life satisfaction, combined life
satisfaction, care-giver burden, perceived impact of stroke, and activities of
daily living.
DESIGN: Cross-sectional study.
SUBJECTS: Persons with stroke and their caregivers (105 dyads).
METHODS: The Occupational Gaps Questionnaire, Life Satisfaction Checklist,
Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used.
Correlations were analysed with Spearman's rank, and regression analyses used
life satisfaction as the dependent variable.
RESULTS: At least one person in 86% of the dyads perceived restrictions in
participation, with the most common gap in travelling for pleasure. Correlations
were low between the numbers of occupational gaps and life satisfaction
(R = -0.33, R = -0.31); however, life satisfaction accounted for occupational
gaps both for persons with stroke and for caregivers. A greater number of
occupational gaps were perceived in the dyads with combined low levels of life
satisfaction compared with those with combined high levels of life satisfaction.
CONCLUSION: Participation in everyday occupations is related to life satisfaction
even for caregivers of persons with stroke. The results of this study add to our
knowledge about the stroke-caregiver dyad and will help to inform family-centred
approaches within stroke rehabilitation.
Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset.
OBJECTIVE: To explore and describe persons with stroke and their caregivers'
restrictions in participation in everyday occupations, i.e. occupational gaps,
3-6 months post-stroke, in relation to life satisfaction, combined life
satisfaction, care-giver burden, perceived impact of stroke, and activities of
daily living.
DESIGN: Cross-sectional study.
SUBJECTS: Persons with stroke and their caregivers (105 dyads).
METHODS: The Occupational Gaps Questionnaire, Life Satisfaction Checklist,
Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used.
Correlations were analysed with Spearman's rank, and regression analyses used
life satisfaction as the dependent variable.
RESULTS: At least one person in 86% of the dyads perceived restrictions in
participation, with the most common gap in travelling for pleasure. Correlations
were low between the numbers of occupational gaps and life satisfaction
(R = -0.33, R = -0.31); however, life satisfaction accounted for occupational
gaps both for persons with stroke and for caregivers. A greater number of
occupational gaps were perceived in the dyads with combined low levels of life
satisfaction compared with those with combined high levels of life satisfaction.
CONCLUSION: Participation in everyday occupations is related to life satisfaction
even for caregivers of persons with stroke. The results of this study add to our
knowledge about the stroke-caregiver dyad and will help to inform family-centred
approaches within stroke rehabilitation.
Perceived Stress and ADHD Symptoms in Adults
OBJECTIVE:
Given that ADHD has been linked to dysfunction across development and in many life domains, it is likely that individuals experiencing these symptoms are at increased risk for experiencing stress. The current study examines the association between ADHD and other psychiatric symptoms and perceived stress in a community sample of adults.
METHOD:
Perceived stress data collected from 983 participants (M(age) = 45.6 years) were analyzed primarily via hierarchical multiple regression using ADHD symptom clusters, demographic variables, and anxiety and depression scale variables as predictors.
RESULTS AND CONCLUSION:
ADHD symptoms positively associated with perceived stress. Inattention and sluggish cognitive tempo (SCT), as opposed to hyperactivity-impulsivity and newly proposed executive dysfunction symptoms, were the most consistent predictors. These findings reinforce that the experience of ADHD symptoms in adulthood is associated with stress and suggest that SCT could play an important role in assessing risk for negative adult outcomes.
Preparing for family caregiving in specialized palliative home care: an ongoing process
OBJECTIVE: Family caregivers have been given increasing importance in palliative
home care and face a great responsibility as caregivers for patients suffering
from incurable illness. Preparedness for caregiving has been found to moderate
negative effects and promote well-being in family caregivers. The aim of our
study was to explore family caregivers' own experiences of preparing for
caregiving in specialized palliative home care.
METHOD: An interpretive descriptive design was chosen. A strategic sampling
method was applied with a focus on participants who rated their preparedness as
high and low using a structured instrument. Qualitative interviews were completed
with 12 family caregivers. They were analyzed using a constant-comparative
technique.
RESULTS: Family caregivers described their experience of preparing for caregiving
as an ongoing process, rather than something done in advance. The process was
illustrated through three subprocesses: "awaring" (realizing the seriousness of
the situation), "adjusting" (managing a challenging situation), and
"anticipating" (planning for the inevitable loss).
SIGNIFICANCE OF RESULTS: Knowledge about the process of preparedness for
caregiving and its subprocesses could be valuable to healthcare professionals,
given the positive effects shown by preparedness in this context. Being able to
recognize the different subprocesses of preparedness for caregiving could provide
healthcare professionals with opportunities to support family caregivers in
managing them. Preparedness for caregiving should be seen as a process to be
supported and promoted continuously in palliative home care, not just at
enrollment.
Preschool Israeli Children Exposed to Rocket Attacks: Assessment, Risk, and Resilience
Preschool children are among the most vulnerable populations to adversity. This study described the effects of 4 weeks of daily exposure to rocket attacks on children living on Israel's southern border. Participants enrolled in this study were 122 preschool children (50% boys) between the ages 3 and 6 years from 10 kindergartens. We assessed mothers' report of children's symptoms according to the DSM-IV and alternative criteria resembling the DSM-5 criteria for posttraumatic stress disorder (PTSD), general adaptation, traumatic exposure, and stressful life events 3 months after the war. The prevalence of PTSD was lower when the diagnosis was derived from the DSM-IV (4%) than from the DSM-5 criteria (14%). Mothers of children with 4 or more stressful life events reported more functional impairment in social, occupational, and other important areas of functioning compared to children with 0 or 1 stressful life event. Children with more severe exposure showed more severe symptoms and mothers had more concerns about the child's functioning (η(p)(2) = .09-.25). Stressful life events and exposure to traumatic experiences accounted for 32% of the variance in PTSD and 19% of the variance in the adaptation scale. Results were explored in terms of risk and resilience factors.
Professionals’ and parents’ shared learning in blended learning networks related to communication and augmentative and alternative communication for people with severe disabilities
People with severe disabilities (SD) communicate in complex ways, and their
teachers, parents and other involved professionals find it difficult to gain knowledge
and share their experiences regarding the person with SD's communication
methods. The purpose of this study is to contribute to our understanding of how
parents and professionals share learning about communication and augmentative
and alternative communication (AAC) for people with SD by participating in
blended learning networks (BLNs). Thirty-six parents and professionals participated
in online web-based BLNs according to a prepared format; four groups
were formed, and all of the groups participated in four discussion sessions and
an evaluation session. Detailed minutes from the 16 BLN sessions, an evaluation
session and course evaluation data were thematically analysed. The theoretical
frameworks were different perspectives on disability within communication
research and special education research, and theories about shared learning in
networks. The analyses revealed themes that focused on communication partners'
knowledge, attitudes and strategies regarding communicating with people
with SD; the importance and power of using multimodal AAC; and the universality,
user-friendliness and empowering aspects of iPads and apps. The findings
suggest that participants perceive communication and AAC with people with SD
from relational, dialogical and interactional perspectives, whereas the categorical
perspective was less pronounced. In accordance with other professional competence
research, the use of online web-based BLNs with mixed groups that was
described in this paper yielded positive evaluations from the participants. The
opportunity for meeting others involved in caring for people with SD, the actual
blended groups and the sharing of technology and AAC experiences in particular
were highlighted.
Psykologilexikon
Qualitative research and evaluation methods. 4th ed.
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.
Riks-Stroke Årsrapport För Helåret 2014
Antal registreringar och täckningsgrad
• Under 2014 rapporterades 7 981 vårdtillfällen för TIA, något fler än 2013. Under 2014
registrerades TIA i Riksstroke vid 62 av landets 72 akutsjukhus, tre sjukhus fler än 2013.
• Utifrån antalet registrerade TIA i Riksstroke kan totala antalet TIA i Sverige under 2014
uppskattas till cirka 10 000.
Demografi, riskfaktorer, vårdform och vårdtider
• Något fler män än kvinnor insjuknade i TIA. Medelåldern är 73 år, cirka tre år lägre än för stroke.
• TIA-patienterna var ofta tungt belastade av riskfaktorer och hade relativt hög beräknad risk att
insjukna i stroke (medelvärdet i ABCD2-score var 4,2 på en sjugradig skala). Noterbart är också
att 20 % av patienterna hade förmaksflimmer och att 11 % var rökare.
• Av alla patienter som registrerades utreddes och vårdades 96 % inneliggande.
Medianvårdtiden var tre dagar.
• Av TIA-patienterna kom 48 % till sjukhus inom tre timmar och 57 % kom in med ambulans.
Diagnostik
• Så gott som alla patienter undersöktes med datortomografi, medan 10 % undersöktes med en
magnetresonanstomografi (MR) av hjärnan.
• Kärlundersökning med ultraljud, DT-angiografi eller MR-angiografi genomfördes hos 70 % av
patienterna. Ultraljud var den vanligaste metoden, även om det varierade mellan sjukhusen.
Långtidsregistrering av EKG för att upptäcka hjärtrytmstörningar genomfördes hos 59 % av
patienterna under det akuta vårdtillfället, och för ytterligare 9 % planerades undersökningen
efter vårdtillfället. Variationerna avseende i praxis mellan sjukhusen var stora.
Sekundärprevention
• Av de TIA-patienter som hade förmaksflimmer behandlades 77 % med perorala antikoagulantia,
en påtaglig ökning jämfört med tidigare år. Andelarna som fick sådan behandling varierade
geografiskt. Andelen som behandlades med någon av de nya orala antikoagulantia var 38 %,
en tydlig ökning.
• Blodtryckssänkande läkemedel gavs till 69 % av patienterna och statiner till 74 %, men med
påtagliga variationer i praxis utefter geografi.
• Den absoluta merparten av rökarna (81 %) rapporterades ha fått råd om rökstopp och 79 %
av de med körkort rapporterades ha fått råd om sin bilkörning. Uppgifter om rökstopp eller
bilkörning saknades i vart fjärde till vart femte fall.
• Bland TIA-patienterna var ett återbesök vid en sjukhusmottagning eller i primärvården
planerat för 91 %.
PRELIMINÄR
12
1.2 BAKGRUND
Transitoriska ischemiska attacker (TIA) beror på övergående proppbil
Samordning av stöd för barn och ungdomar med flerfunktionsnedsättning och deras familjer
Syftet med kunskapsöversikten är att undersöka kunskapsläget om samordning av stöd till föräldrar med barn med flerfunktionsnedsättningar. Forskning visar att livet för familjer där barnen har omfattande funktionsnedsättningar är påfrestande och att kraven på föräldrarna många gånger är så stora, att föräldrarna inte kan leva som andra föräldrar och familjen som andra barnfamiljer. Föräldrastöd finns i olika former, både generellt och riktat, men det föräldrastöd som föräldrar med barn med funktionsnedsättningar efterlyser innebär något helt annat och behöver måste därmed vara anpassat för denna målgrupp. Ämnet för kunskapsöversikten, samordnat föräldrastöd, i relation till målgruppen barn med flerfunktionsnedsättningar och deras familjer är ett område som vi på förhand vet att det finns mycket lite skrivet om. Kunskapsöversikten tar sin utgångspunkt i hur resonemanget förts kring samordning av stöd till föräldrar med barn med funktionsnedsättningar mellan politiker, myndigheter och andra aktörer. I denna kunskapsöversikt har samordning av stöd till barn och ungdomar med omfattande funktionsnedsättningar och deras familjer
beskrivits ur olika perspektiv. Behovet av ett samordnat föräldrastöd för familjer med barn och ungdomar med omfattande funktionsnedsättningar är stort. Kunskapsöversikten visar varför ett samordnat föräldrastöd är betydelsefullt och att det finns olika modeller för hur samverkan kan ske över myndighets-, verksamhets-, och professionsgränser oavsett huvudman. Därutöver behövs oberoende samordnare som har ett övergripande samordningsansvar och inte är kopplade till någon specifik verksamhet. Kunskapsöversikten avslutas med exempel på några intressanta utvecklingsprojekt som arbetar med att öka samordning av
stöd eller underlätta tillgängligheten av stöd till familjer med barn med funktionsnedsättningar.
I vems händer? Om arbete, genus, åldrande och omsorg i tre EU-länder
Interaction between adult patients’ family members and nursing staff on a hospital ward
The purpose of this study was to generate knowledge of the interaction between an adult patient's family members and nursing staff from the staff's perspective.
Data were collected from nursing staff (n=155) working on the wards and out-patient departments for pulmonary, rheumatic, neurological and gastroenterological diseases at a university hospital by using a new questionnaire based on earlier research and the literature. The questions explored the staff's views of interaction with the adult patient's family members. In this study, interaction is seen as an umbrella concept which encompasses giving information to relatives, discussion, contacts between staff and significant others and working together. The instrument included questions about personal and telephone discussions, the provision of written instructions and factors facilitating and complicating interaction. The response rate was 55%. The data were analysed using SPSS software and examined using frequency and percentage distributions and cross-tabulation. The open-ended questions were analysed using qualitative content analysis by reducing, grouping and abstracting the data inductively.
Discussions with relatives while they visited the patient in hospital were the commonest form of interaction. The majority of respondents perceived the interaction with the patient and knowing his or her family members as important. Less than one-fourth of the respondents started discussion with family members, while the majority expected family members to initiate interaction. The majority of respondents perceived the patient's presence in discussion as important, but sometimes they thought it was necessary to discuss with family members without the patient. The staff discussed with family members mainly in the ward office or in patient rooms, which were, however, not perceived as peaceful. Discussions primarily pertained to the patient's condition, discharge from hospital and planning of continued treatment.
Psychopatology in children of holocaust survivors: a review of the research literature
The literature on transgenerational transmission of Holocaust trauma has grown into a rich body of unique psychological knowledge with almost 400 publications. For the time being, however, the transgenerational effect of the Holocaust on the offspring remains a subject of considerable controversy. The main question involves the presence or absence of specific psychopathology in this population. Psychotherapists kept reporting various characteristic signs of distress while research failed to find significant differences between offspring and comparative groups. In an effort to settle this question, the present review of the research literature provides a summary of the findings of 35 comparative studies on the mental state of offspring of Holocaust survivors, published between 1973-1999. This extensive research indicates rather conclusively that the non-clinical population of children of Holocaust survivors does not show signs of more psychopathology than others do. Children of Holocaust survivors tend to function rather well in terms of manifest psychopathology and differences in the mental state of offspring and people in general are small according to most research. The clinical population of offspring, however, tend to present a specific "psychological profile" that includes a predisposition to PTSD, various difficulties in separation-individuation and a contradictory mix of resilience and vulnerability when coping with stress.
Supportive groups for siblings of pediatric oncology patients: impact on anxiety
Childhood cancer can have a substantial emotional impact on the siblings of the sick child. In order to help these siblings adjust to the illness, supportive groups were started in 1994 at our medical center. The program is based on a model of psychosocial support; the aim of the group is to enhance control strategies and, thus, to reduce anxiety. It consists of five sessions and is offered to siblings aged 7–18. The study objective is to evaluate the effect of group participation on sibling anxiety. The State Trait Anxiety Inventory for Children was administered to 24 siblings before and after group participation.
Results showed that siblings experience less anxiety after participating in the group. Before group participation, a majority of the siblings were more anxious compared with normal peers. The sibling's age and sex, whether the ill child is in treatment, survival perspective, and time since diagnosis were not related to anxiety reduction. The continuation of the group is supported by its positive impact on siblings. Results must nevertheless be interpreted cautiously, considering the small number of siblings participating in the study, the lack of a control group and the restriction to one outcome measure.
The child´s worries about the mother´s breast cancer: Sources of distress in school-age children
Abstract
PURPOSE/OBJECTIVES:
To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer.
DESIGN:
Descriptive, qualitative study.
SETTING:
Private family homes.
SAMPLE:
Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer.
METHODS:
Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer.
MAIN RESEARCH VARIABLES:
Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses.
FINDINGS:
The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family would have to cut back financially; worrying about talking to others; and wondering if they, the children, would get cancer.
CONCLUSIONS:
Children of mothers with breast cancer experience multiple worries concerning their mothers, their families, and themselves. The data revealed that they attempted to make sense of their mothers' illness for themselves and imagined how it might affect their own lives in the future.
IMPLICATIONS FOR NURSING PRACTICE:
Programs and materials need to be developed that help parents address the multiple worries that children whose mothers have early-stage breast cancer experience.
The incredible years: Parents, teachers, and children training series
This artcle summarizes the Incredible Years Series. The training series consists of three empirically validated and integrated programs for parents, teachers and children that are designed to promote social competence and prevent, reduce and treat conduct problems in young children. The training methods, content and processes are explained.
The NAS EarlyBird Programme: partnerships with parents in early intervention
Early intervention bridges the gap between early diagnosis and appropriate educational placement. The National Autistic Society has developed an autism-specific three-month parent package, the NAS EarlyBird Programme, that emphasizes partnership with parents. Six families participate in each three-month programme, which combines weekly group training sessions for parents with individualized home visits. During the programme parents learn to understand autism, to build social communication, and to analyse and use structure, so as to prevent inappropriate behaviours. The use of video and the group dynamic amongst families are important components of the programme. An efficacy study evaluated the pilot programme and further monitoring is in progress. Training courses in the licensed use of the NAS EarlyBird Programme are now available for teams of professionals with prior experience of autism. Strengths and weaknesses of the programme are discussed. This short-term, affordable package, with supporting evidence of efficacy, offers a model of early intervention that is very popular with parents.
"Om åtminstone blöjleveranserna kunde komma i tid!". Vårda och vårdas. Äldre och deras anhöriga, två undersökningar år 2000, utförd på uppdrag av Socialstyrelsen
Den riksrepresentativa undersökning av hemmaboende äldre 75+ som gjordes våren 2000(Socialstyrelsen 2000a) är utgångspunkten för föreliggande två studier av äldre som själva är anhörigvårdare respektive av äldre som får anhörigvård.Av äldre som själva är anhörigvårdare har i föreliggande undersökning enbart personer som vårdar någon i det egna hemmet valt att medverka; nästan alla är make/maka till den vårdade. Detta innebär en något beskuren bild av äldre som omsorgsgivare, men troligen en adekvat belysning av äldre som vårdar sin partner. Bland äldre som fick mycket hjälp-omsorg-vård intervjuades anhöriga, av dessa var drygt hälften en maka-make. Totalt omfattar intervjuerna 56 personer (20 respektive 36 i dessa två grupper). I båda kategorierna är likheterna mer slående än skillnaderna.De flesta anhörigvårdare är själva äldre. Inte så få är män, särskilt inom äktenskapets ram. När makar står för omsorgen har vården ofta pågått länge och för en del har den medfört nedsatt hälsa.Vårduppgifterna är ibland fysiskt och/eller psykiskt betungande och medför ofta inskränkningar i den anhöriges sociala liv. Få av dem har arbete och än färre har tagit ledigt för att vårda. De vårdade har vanligen mycket nedsatt funktionsförmåga och är helt beroende av vårdaren, något som är tydligt belastande. Ganska många är drabbade av demenssymptom eller andra kognitiva nedsättningar.Det mest påtagliga är att så få använder offentlig hjälp. De som har sådan, har ofta mycket få insatser. De använder ett fåtal hemhjälpstimmar eller enbart annan hemtjänst såsom larm, matlåda och/eller färdtjänst. Många har dock fått sina bostäder anpassade och några får omfattande offentlig hjälp och är uttalat nöjd med den, men många av dem som inte har offentlig hjälp är också nöjda. Minst en tredjedel av anhörigvårdarna har uttalade önskemål om offentligt stöd.Manliga anhörigvårdare använder sig oftare av offentlig hjälp (hemhjälp m.m.) än kvinnliga anhöriga. Många av vårdarna får också hjälp av andra anhöriga, när sådana finns att tillgå. Påfallande många står dock utan stöd från andra anhöriga, bland de yngre är många enda barnet eller det enda tillgängliga barnet. Totalt sett bor nästan alla vårdare tillsammans med eller mycket nära den de hjälper. De vårdade oftast färre anhöriga (partner, barn, syskon, annan släkt) än den äldre befolkningen i allmänhet.Mycket få vårdare efterlyser spontant något offentligt stöd. Endast hälften efterfrågar hjälp när de får ta ställning till konkreta listor över tänkbara stödformer. De som önskar hjälp vill endera ha "avlastning" och/eller rehabilitering respektive (mer) hjälp med hushållet. Endast en sjättedel avvisar offentligt stöd i alla former. När anhöriga formulerar önskemål är de ofta mycket blygsamma: "om åtminstone blöjleveranserna kom i tid!". De offentliga insatserna framstår ibland som fantasilösa, otydliga och inflexibla. Studien fann också flera exempel på anmärkningsvärda missförstånd. Uppenbart är att många av dessa anhörigvårdare har (fått) föga information om stödmöjligheter m.m.Anmärkningsvärt många anhöriga (ca. hälften) önskar ekonomisk ersättning för sina insatser, några har redan små belopp för det de uträttar. När anhörigvårdare begärt ersättning har det för flera avslagits utan motivering eller på tveksamma grunder.Trots allt är närmare hälften i stort sett nöjda med sin situation och med den offentliga hjälp de får. Undersökningen finner åtskilliga exempel på illa fungerande offentlig hjälp, men också flera goda exempel på välfungerande insatser med mycket nöjda vårdtagare och anhöriga. Knappt hälften av vårdarna är intresserade av kontakt med frivilligverksamhet, något som ett fåtal redan har. Dessa är i allmänhet tydligt nöjda med detta stöd.
24-timmarscenter - stöd till anhöriga som vårdar demenshandikappade i hemmet
Rapporter från Anhörig 300-konferenser våren 2001,Anhörig 300
A cluster analysis of patients with schizophrenia in community care
In 203 patients (aged 15–64 yrs) with schizophrenia, the authors identified different clusters of Ss on the basis of the severity of psychopathology, disability, and family burden. Patient measures included the Disability Assessment Schedule and the Brief Psychiatric Rating Scale. Family burden, including relatives' satisfaction with services provided, was evaluated with the Questionnaire for Family Problems. In the 1st cluster, patients' severity of illness was mild and their use of services low. In the 2nd, patients' disability was more severe; psychiatric symptoms were low in severity, family burden was moderate, and use of community services was more intensive. In the 3rd cluster, patients had serious disability and severe positive symptoms; their families suffered distressing burdens, and their use of hospital and community services was intensive. In the 4th cluster, patients' disability was very severe, negative symptoms were prominent, and relatives' burden was moderate; use of hospital services was frequent, and use of community services was less so. Findings suggest that improving responsiveness to the needs of the most seriously ill patients and their families is a central issue that requires further study and practical implementation. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
ADHD in Swedish 3- to 7-year-old children
Objective: To study characteristics of attention-deficit/hyperactivity disorder (ADHD) in a representative group of clinically impaired young children in Sweden with the disorder. Method: One hundred thirty-one children with ADHD (aged 3–7 years) were examined, and their parents were interviewed. Independent parent questionnaire data (Child Behavior Checklist, ADHD Rating Scale-IV, Conners) were collected. For comparison 131 children without ADHD were matched for age, gender, parents' marital status, child's adoption status, and social class. Results: Children with ADHD had extremely high ADHD symptom levels—on average four to eight times higher than the comparison group. Sociodemographic correlates of ADHD symptoms were more pronounced in parent questionnaire data than in parent interview data, underscoring the importance of diagnostic interview when dealing with clinical issues. Very few of the children with ADHD (6%) appeared "normal" with regard to attention/activity level at clinical examination.Conclusions: Clinic children with a diagnosis of DSMIV ADHD have typical and impairing symptoms already before starting school. The variance of ADHD in this age group appears to be accounted for by primary psychosocial factors only to a limited degree. It would seem reasonable to establish supportive and treatment measures for these young children so that the psychosocial and academic problems shown by so many individuals with ADHD later in their development might be reduced.
An intervention for parents with AIDS and their adolescent children
OBJECTIVES: This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS. METHODS: Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years. RESULTS: Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions. CONCLUSIONS: Interventions can reduce the long-term impact of parents' HIV status on themselves and their children
An intervention for parents with AIDS and their adolescent children
Abstract
OBJECTIVES:
This study evaluated an intervention designed to improve behavioral and mental health outcomes among adolescents and their parents with AIDS.
METHODS:
Parents with AIDS (n = 307) and their adolescent children (n = 412) were randomly assigned to an intensive intervention or a standard care control condition. Ninety-five percent of subjects were reassessed at least once annually over 2 years.
RESULTS:
Adolescents in the intensive intervention condition reported significantly lower levels of emotional distress, of multiple problem behaviors, of conduct problems, and of family-related stressors and higher levels of self-esteem than adolescents in the standard care condition. Parents with AIDS in the intervention condition also reported significantly lower levels of emotional distress and multiple problem behaviors. Coping style, levels of disclosure regarding serostatus, and formation of legal custody plans were similar across intervention conditions.
CONCLUSIONS:
Interventions can reduce the long-term impact of parents' HIV status on themselves and their children.
Anhörigas behov av stöd när de vårdar en äldre närstående i hemmet : En systematisk litteraturstudie (Vård i livets slutskede ; 2001:7).
Anhörigskapets variationer : Åtta berättelser från hjälpgivare i olika miljöer
Anhörigstöd i teori och praktik
Anhörigvård och anhörigstöd i Uppsala : Rapport från en forskningscirkel inom Uppsala Pensionärsuniversitet
Ansvar för sina föräldrar, jo det har man : Om relationer mellan generationerna : Ålderism.
Att bemöta en anhörig på ett bra sätt : demensvårdens olika sidor
Att bemöta en anhörig på ett bra sätt : Demensvårdens olika sidor
Att leva med en demenssjuk person : anhörigas behov av stöd och hjälp. Rapport 2
Att vara anhörig och att stödja anhöriga (DFR-rapport)
Avveckling av anstaltsvården för utvecklingsstörda nu fullbordad
Barn med koncentrationssvårigheter
Barn till föräldrar med psykisk ohälsa. – En intervjuundersökning av hur familjer upplever Mobila teamets BUP-resurs vid Lasarettet i Motala
Barns vardagsliv i familjehem
Beck Youth inventories of emotional and social impairment
Being a parent of an adult son or daughter with severe mental illness receiving professional care: parent`s narratives
The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.
Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents’ narratives
The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships''coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.
Bemötande av anhöriga - hur blir vi bättre?
Rapporter från Anhörig 300-konferenser våren 2001,Anhörig 300
Skrämda barn Klinisk barnpsykologi, utveckling på avvägar
Boken vill belysa hur den psykiska utvecklingen hos barn kan ta sig olika vägar. Psykisk ohälsa ses därvid som en avvikelse från normalutvecklingen. Utifrån frågeställningar som varför barn blir rädda, ängsliga eller arga beskriver författarna vad det är som gör att vissa barn kan behöva professionell hjälp för att utvecklas i rätt riktning.
Boken består av två delar. I den första ges en allmän introduktion till den kliniska barnpsykologin. Författarna redogör för bland annat utvecklingspsykopatologin och anknytningsteorin. Genomgående presenteras utvecklingen som ett ständigt pågående samspel mellan barnets medfödda egenskaper och den omgivande miljöns sätt att svara på barnets behov och personliga uttryckssätt. Barnets föräldrar har därvidlag en unik betydelse, vilket inte innebär att andra miljöfaktorer, som syskon och jämnårigas betydelse, förringas. I denna del presenteras och diskuteras också det psykiatriska diagnosbegreppet och dess tillämpbarhet inom klinisk barnpsykologi.
I den andra delen använder författarna sin långa kliniska erfarenhet för att presentera olika former av psykisk ohälsa hos barn. I de olika kapitlen belyses med konkreta kliniska exempel utredning och förslag till behandling av barn med inåtvända (ångest och depression), utagerande (ilska och bråk) eller mer neuropsykologiska besvär.
Boken riktar sig till studerande inom psykologi, pedagogik, socialt arbete och andra vårdutbildningar. Den vänder sig också till yrkesverksamma inom barnhälsovård, skola, socialtjänst m.m. och till vidareutbildningar i psykoterapi.
Små barns behov av en långsiktig trygg bas: en barnpsykologisk kunskapsöversikt
Detta kunskapsunderlag handlar om de yngsta barnens behov i de situationer där
brister i deras omvårdnad kräver särskild samhällelig uppmärksamhet. Rapporten
inleds med en genomgång av anknytningsteorin. Denna används som en
utvecklingspsykologisk referensram för att beskriva barns känslomässiga
utveckling med speciellt fokus på de anknytningsrelationer som skapas under de
första tre till fyra levnadsåren. Människobarnet är vid födseln fysiskt och psykiskt
beroende av den vuxne för sin överlevnad och den eller de föräldrapersoner som
regelbundet tar hand om barnet kommer genom sin omvårdnad att bli barnets
anknytningsperson/er och påverka barnets psykosociala utveckling, både på kort
och på lång sikt.
Barn är programmerade att ta emot omvårdnad, det nyfödda barnet signalerar
sitt behov av att bli omhändertaget, och från 8-9 månader protesterar barnet mot att
skiljas från den som barnet fått erfarenheter av har tillhandahållit omvårdnad. För
barnet är det gynnsamt med minst en, men gärna fler än en, långsiktigt engagerade
föräldrar som med lyhördhet svarar på barnets behov av närhet, tröst och skydd.
Anknytningspersonen bör vara "stor, stark, klok och snäll" för att kunna erbjuda
barnet en trygg bas att utforska världen från och en säker hamn att kunna återvända
till när världen är eller upplevs som farlig. Barn som med hjälp av sin
anknytningsperson lär sig att använda sina egna resurser och lita på andras hjälp
vid behov kan själv reglera sin stress och lättare klara rimliga och åldersrelevanta
utmaningar under uppväxten. En viktig del av anknytningsteorin beskriver små
barns reaktioner på att bli skilda från sin anknytningsperson, där protest, förtvivlan
och losskoppling beskriver de tre reaktionsmönster som kännetecknar barnets
försök att hantera den psykologiska förlusten av trygghet.
En genomgång av den internationella forskningslitteraturen speglar de
variationer som finns i former för barns boende och de situationer där barn inte kan
bo hos sina föräldrar. Vi redogör för förutsättningar och krav som kan ställas när
barn ska övernatta i mer än en omsorgsmiljö, t.ex. hos biologiska föräldrar och
tidigare familjehemsföräldrar. Varje land har sina rättssystem och principer som
styr formerna för samhällsvård av små barn vars liv och hälsa är i fara. Vi redogör
för kunskapen om den långsiktiga psykosociala utvecklingen hos barn på
institution, barn i familje-hem och adopterade barn. Slutsatserna är entydiga, den
mest olämpliga miljön för späda och små barn är att bo på institution (utan sin
förälder), och denna form bör därför inte användas annat än i undantagsfall. De
stora svårigheterna med institutionsvård är de begränsade möjligheterna att erbjuda
långsiktigt, engagerat och stabilt omhändertagande där barnen får möjlighet att
knyta an till en eller ett par specifika personer. Familjehem är den vanligaste
vårdformen i västvärldens kulturer men flera uppföljningar visar att barn i denna
vårdform inte alltid når de goda utvecklingsresultat som barn har rätt till.
Forskningen pekar på brister och poängterar hur denna vårdform kräver stort
engagemang från samhället för att fungera på ett godtagbart sätt. En god
familjehemsvård förutsätter att de sociala myndigheterna ansvarar för att
tillhandahålla utbildning, handledning och långsiktigt stabila förutsättningar så att
de vuxna som ska träda in i de biologiska föräldrarnas ställe och ta emot ett barn i
sin egen familj kan göra det på ett bra sätt. En "triadisk trygg bas", där barn,
familjehem och biologisk familj kan samarbeta är eftersträvansvärt, men kräver
ofta stora insatser och stöd från myndigheterna. Till sist visar adoptionsforskningen
en trend mot alltmer öppna adoptioner, en form som uppfattas positivt av alla
inblandade och som underlättar för barnet att behålla en kontakt med sitt biologiska
ursprung. De öppna adoptionerna har gemensamma drag med den vårdnads-
överflyttning som i Sverige kan föreslås av socialnämnd och prövas i tingsrätt.
Vårdnadsöverflyttning ska alltid övervägas efter det att barnet bott tre år i
samma familjehem, men kan också initieras tidigare. Vissa betydelsefulla
skillnader finns emellertid mellan en öppen adoption och en vårdnadsöverflyttning.
En adoption är, även om den är öppen, definitiv då alla rättsliga relationer mellan
barnet och den biologiska familjen bryts. Denna brytning sker inte vid
vårdnadsöverflyttning, då barnet i dessa fall har kvar umgänges- och arvsrätt.
Varför vårdnadsöverflyttning, som utgår från barnets rätt till fortsatt relation till
sina "psykologiska" föräldrar och som förespråkats i Sverige, används i så
begränsad omfattning bör utredas närmare och de hinder, som försvårar
lagstiftarens intentioner med vårdnadsöverflyttning, bör undanröjas.
I rapportens diskussionsavsnitt behandlas frågan om den bästa formen för akuta
placeringar av små barn, vars liv och hälsa är i omedelbar fara. Vi föreslår att små
barn om möjligt inte ska skiljas från sin förälder och placeras i ett jourfosterhem
för att därefter eventuellt uppleva ytterligare separation och introduceras till en ny
föräldraomgivning. Den biologiska föräldern och barnet bör i stället vistas
tillsammans (såvida inte föräldern är akut farlig för barnet) i form av en gemensam
placering, där föräldern kan få stöd, familjens situation kartläggas och relationen
mellan biologisk förälder och barn observeras under utredningstiden. Om barnet
och föräldern måste skiljas åt ska barnet placeras så att en tät kontakt mellan barn
och förälder kan upprätthållas till dess att slutligt beslut fattats.
I diskussionsavsnittet ger vi också synpunkter på betydelsen av längden på
samhällsvården i förhållande till barns ålder, samt frågor om stöd för kontinuitet
mellan olika personer och miljöer i barnets liv. Hänsyn till barns ålder måste tas i
varje enskilt fall. Barn som varit två av sina första fyra år i ett familjehem har t ex i
de allra flesta fall utvecklat en starkare förankring i familje-hemmet jämfört med
äldre barn som varit där tre av sina tolv år. Yngre barns behov av sina
familjehemsföräldrar kan därför se annorlunda ut än äldres.
I de fall grunden för samhällsvård, i form av förälderns oförmåga att ta hand om
sitt barn, har upphört måste barnens anknytning och behov av omvårdnadsmässig
stabilitet vägas in. I synnerhet små barn måste med tvingande biologisk
nödvändighet rikta sitt anknytningsbehov mot de vuxna som trätt i de biologiska
föräldrarnas ställe. Risken för barnets utveckling, genom att ryckas upp ur den
miljö som barnet rotat sig i och flytta från de familjehems-föräldrar som barnet
upplever som sina "riktiga" föräldrar, måste nogsamt vägas mot de biologiska
föräldrarnas berättigade önskan att återfå sitt barn.
Till sist understryks de specifika hänsyn som måste tas när det gäller barn som
utsatts för allvarlig omsorgssvikt och vars behov av extra trygghet och långsiktig
stabilitet är avgörande för deras fortsatta utveckling. Om socialnämnden beslutar
om familjehemsplacering krävs för att kunna handlägga dessa svåra ärenden: (1)
särskilt välfungerande familjehem (2) en långsiktig planering, (3) en stödjande
organisation för familjehemmet att luta sig mot, (4) särskilt anpassad utbildning
och handledning samt (5) att familjehemmet tillåts fokusera på barnets
välbefinnande och inte belastas med långtgående krav på samarbete med de
biologiska föräldrarna.
Stereotypes about caregiving and lessons from the Swedish panorama of care
This article analyzes the panorama of care provision in Sweden from the informal carers' perspective. We consider informal care, publicly financed services, for-profit agencies and voluntary organizations, using a survey conducted in 2009. Most cared-for persons with minor needs living in a separate household are helped also by others, but only a tenth use public services or other providers. About half of cared-for persons with major needs living in a separate household receive care also from other informal carers as well as public services. Only 1 in 10 of them relied on no one else beyond the carer interviewed. Among intra household carers—a minority of all persons cared for—it was common that the carer was alone in his/her commitment, without any contributions from public services or others. For the large majority of informal carers it is not a solitary undertaking as the commitment is often shared with family members and others and/or public services. The results suggest that ideal types about complementarity and substitution may understate the complex interplay between informal care and the public services (and potential other providers). The findings may suggest a need for more empirical research about 'Care Cultures' and expose simplistic representations of welfare societies; informal care plays a major—and increasing—role also in Sweden, a country with extensive public services.
Denna artikel analyserar omsorgspanoramat i Sverige från de informella hjälp- och omsorgsgivarnas perspektiv. Vi beaktar dem, offentligt finansierad service, marknadsbaserad omsorg och frivilliga organisationer, med data från en survey år 2009. De som hade ett mindre behov av hjälp och som inte sammanbor med den informelle hjälpgivaren - intervjupersonen - får ofta ytterligare hjälp från någon annan, men bara en tiondel använder offentligt finansierade tjänster. Ungefär hälften av de som hade ett omfattande omsorgsbehov fick, utöver informell omsorg, hjälp från den offentliga omsorgen. Tio procent fick hjälp endast från den intervjuade omsorgsgivaren. Omsorgsgivare för någon i det egna hushållet var ofta ensamma i sitt åtagande som omsorgsgivare, utan ytterligare hjälp från någon annan, men de utgör en minoritet. För de flesta informella omsorgsgivare är det inte ett ensamt åtagande, utan delas ofta med andra närstående och/eller offentlig service och omsorg. Resultaten tyder på att idealmodeller om komplementaritet och substitution mellan olika omsorgsaktörer underskattar det komplexa samspelet mellan informell och offentlig omsorg (och eventuella andra aktörer). Studien visar att det behövs mer empirisk forskning kring 'omsorgskulturer' och förenklade modeller av välfärdssamhällen. Informell omsorg spelar en stor - och växande - roll även i Sverige, ett land med omfattande offentlig omsorg.
Stödet till anhöriga i Uppsala kommun 2010 – 2013 Slutrapport, FoU-rapport 2015/1.
I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. För att dra lärdom utvecklingsarbetet har Nationellt
kompetenscentrum anhöriga (Nka) tagit initiativ till denna undersökning för att i samverkan
med åtta av landets FoU-enheter kartlägga och följa utvecklingen av stödet till anhöriga under
tre år i åtta kommuner.
Syftet med studien är att:
- Kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras, följs upp
och utvärderas inom områdena äldre, funktionshinder och individ- familjeomsorg samt
samverkan mellan kommun, landsting, ideella organisationer och andra aktörer inom
området.
- Undersöka hur de olika huvudintressenterna bedömer kvaliteten på stödet till anhöriga
- Under tre år följa utvecklingen i de kommuner/kommundelar som ingår i studien.
Stödet till anhöriga i de utvalda kommunerna har kartlagts år 2010 och år 2013 genom att ta
del av tillgängliga dokument, kommunernas hemsida och informationsblad samt intervjuer
med och enkätutskick till chefer och andra nyckelpersoner. Genom en enkätstudie med
uppföljande telefonintervjuer har anhörigas situation och syn på sitt stöd, undersökts vid två
tillfällen. Årligen genomfördes fokusgruppsintervjuer, en inom vardera äldre-,
funktionshinder- samt individ och familjeområdet med syftet att beskriva och följa
utvecklingen av stödet till anhöriga; vad som fungerade bra och mindre bra. I varje
fokusgrupp ingick personal, beslutsfattare och representanter från ideella sektorn.
I denna delrapport, som också är slutrapport för hela projektet, presenteras resultatet för den
sista kartläggningen, gällande år 2013. Utvecklingen av anhörigstödet under de senaste åren
beskrivs också genom en jämförelse av resultaten från de olika kartläggningarna.
Tyngdpunkten i denna sammanfattning ligger på denna jämförelse.
Resultat
Det har inte skett några omvälvande förändringar i anhörigstödet i Uppsala kommun som
helhet under åren 2010 till 2013, men utvecklingen har inte stått stilla. Medvetenheten om
vikten av ett anhörigperspektiv hade på flera håll ökat.
Anhörigcentrum genomgick under tidsperioden en stor organisationsförändring.
Verksamheten bedrevs under två år som projekt, för att sedan fortsätta med ettåriga avtal i
väntan på beslut om eventuell konkurrensutsättning. Kunskapen om Anhörigcentrums
existens ökade under undersökningsperioden i kommunen och allt fler anhöriga sökte sig dit.
Målgruppen förändrades genom att också inkludera anhöriga till personer på boenden.
Anhöriga till äldre personer var fortfarande den största målgruppen, men en ökning av
anhöriga till yngre personer och framför allt från psykiatri och socialpsykiatri kunde noteras.
Utformningen av stödet till anhöriga var i stort densamma, men förändrades i viss mån till
exempel genom att anhöriggrupperna vände sig till andra målgrupper, rekreationshelger
infördes och anhöriga fick möjlighet till juristhjälp. Behovsinventeringar gjordes årligen, men
på lite olika sätt och med olika fokus. Anhörigcentrum ingick vid tiden för kartläggning två i
kommunens Nöjd-Kund-Index. Samverkan med landstinget utvecklades under tidsperioden
med t.ex. bemanning av "anhörighörna" på Akademiska sjukhuset och Anhörigcentrum hade
också tagit en aktiv del i landstingets projekt för utveckling av anhörigstöd.
8
I Äldrenämndens uppdragsplaner var effektmålen desamma för anhörigstödet under
uppföljningstiden, men målvärdena för antalet personer som skulle använda sig av
anhörigstödet (läs Anhörigcentrum) ökade från år till år. I förfrågningsunderlaget gällande
hemvård hade nya ska-krav införts under en egen rubrik; Anhörigvänlig vård och omsorg.
Inom hemvården hade också anhöriga börjat uppmärksammas genom anhörigträffar
information med mera. Inom vård- och omsorgsboendena fortsatte anhörigstödet
huvudsakligen inom den palliativa och avancerade sjukvården, men nytt var att Silviasystrar
inom åtminstone ett annat boende hade introducerat anhöriggrupper. Ett omfattande
värdegrundsarbete genomfördes inom äldreomsorgen som också inkluderade anhörigfrågor.
I förfrågningsunderlagen för upphandling av LSS-boendeenheter hade år 2013 infogats, under
rubriken Anhöriga, specifika ska-krav rörande anhöriga som inte hade funnits tidigare. Inom
Affärsområde assistans hade en grupp chefer i utvecklingssyfte börjat arbeta med
anhörigfrågor och anhörigas delaktighet. Verksamheten för anställda anhöriga bedrevs med
höga ambitioner och engagemang. Affärsområdeschefen i Affärsområde barn, ungdom &
familj beklagade bristen på stöd till anhöriga till personer under 21 år. Några insatser inom
verksamheten hade blivit mer flexibla bland annat för att underlätta för anhöriga. Arbete med
Samordnad individuell plan (Sip) infördes under uppföljningstiden och detta trodde många
skulle underlätta anhörigas situation.
I måldokument från de båda åren lyftes helhetsperspektiv och familjens roll fram på likartat
sätt inom individ- och familjeområdet. I kommunens drogpolitiska program nämndes
anhöriga som målgrupp för verksamheten. Viktiga stödinsatser erbjöds under hela den
undersökta tidsperioden inom Råd- och behandlingsgruppen, Trappan och familjeenheterna.
Inom Affärsområde socialpsykiatri & beroende hade en ny form av utbildning skapats. Den så
kallade återhämtningsakademin som ämnade samla brukare, personal och anhöriga i
gemensamma utbildningar.
Resultaten från enkäten till de anhöriga skiljer sig inte i någon större omfattning mellan de
båda studerade åren. Det är relativt stora andelar av respondenterna som beskriver en
problematisk livssituation och resultaten antyder också att det är de känslomässiga
dimensionerna som kan kräva ytterligare stödinsatser.
Det mest slående resultatet i de båda intervjuundersökningarna var att de anhöriga var nöjda
med det stöd som de hade fått. Framför allt gällde detta Anhörigcentrums verksamhet.
Rapporten avslutas med en begreppsdiskussion. Orden anhöriga, närstående, anhörigstöd med
flera används på olikartade sätt. För att kunna beskriva, följa, jämföra och inte minst utveckla
innehållet i stödet till anhöriga krävs att begreppsapparaten utvecklas. Fördelar och nackdelar
med ett specialiserat centraliserat anhörigstöd i jämförelse med ett integrerat decentraliserat
stöd diskuteras vidare och vikten av att ett anhörigperspektiv och anhörigstöd implementeras i
hela socialtjänsten betonas. För detta krävs bland annat att anhörigfrågorna finns med i
styrdokumenten på alla nivåer och att utbildningsinsatser genomförs.
Uppsala kommun har i en nationell jämförelse legat långt framme i anhörigfrågor under en
lång tid. Klimatet för att bygga upp och utveckla ett (specialiserat) anhörigstöd har varit gott.
En förhoppning är att den positiva trenden kommer att fortsätta i vetskapen om att mycket
hitintills är gjort, men att de svåraste uppgifterna kanske återstår; att se till att
anhörigperspektiv och anhörigstöd integreras inom hela socialtjänsten.
Systematic Review on Post-Traumatic Stress Disorder Among Survivors of the Wenchuan Earthquake
Post-traumatic stress disorder (PTSD) widely occurs among victims or witness of disasters. With flashbacks, hyperarousal, and avoidance being the typical symptoms, PTSD became a focus of psychological research. The earthquake in Wenchuan, China, on May 12, 2008, was without precedent in magnitude and aftermath and caused huge damage, which drew scientists' attention to mental health of the survivors. We conducted a systematic overview by collecting published articles from the PubMed database and classifying them into five points: epidemiology, neuropathology, biochemistry, genetics and epigenetics, and treatment. The large body of research during the past 6 years showed that adolescents and adults were among the most studied populations with high prevalence rates for PTSD. Genomic and transcriptomic studies focusing on gene × environment studies as well as epigenetics are still rare, although a few available data showed great potential to better understand the pathophysiology of PTSD as multifactorial disease. Phytotherapy with Chinese herbs and acupuncture are rarely reported as of yet, although the first published data indicated promising therapy effects. Future studies should focus on the following points: (1) The affected populations under observation should be better defined concerning individual risk factor, time of observation, spatial movement, and individual disease courses of patients. (2) The role of social support for prevalence rates of PTSD should be observed in more detail. (3) Efficacy and safety of Chinese medicine should be studied to find potential interventions and effective treatments of PTSD.
Systematic Review on Post-Traumatic Stress Disorder Among Survivors of the Wenchuan Earthquake
Post-traumatic stress disorder (PTSD) widely occurs among victims or witness of disasters. With flashbacks, hyperarousal, and avoidance being the typical symptoms, PTSD became a focus of psychological research. The earthquake in Wenchuan, China, on May 12, 2008, was without precedent in magnitude and aftermath and caused huge damage, which drew scientists' attention to mental health of the survivors. We conducted a systematic overview by collecting published articles from the PubMed database and classifying them into five points: epidemiology, neuropathology, biochemistry, genetics and epigenetics, and treatment. The large body of research during the past 6 years showed that adolescents and adults were among the most studied populations with high prevalence rates for PTSD. Genomic and transcriptomic studies focusing on gene × environment studies as well as epigenetics are still rare, although a few available data showed great potential to better understand the pathophysiology of PTSD as multifactorial disease. Phytotherapy with Chinese herbs and acupuncture are rarely reported as of yet, although the first published data indicated promising therapy effects. Future studies should focus on the following points: (1) The affected populations under observation should be better defined concerning individual risk factor, time of observation, spatial movement, and individual disease courses of patients. (2) The role of social support for prevalence rates of PTSD should be observed in more detail. (3) Efficacy and safety of Chinese medicine should be studied to find potential interventions and effective treatments of PTSD.
The association between positive-negative reactions of informal caregivers of people with dementia and health outcomes in eight European countries: a cross-sectional study
AIM: To describe the associations between positive and negative reactions of
informal caregivers of people with dementia and health outcomes across eight
European Countries.
BACKGROUND: Caring for someone with dementia may have implications for the
caregiver's own health and for the care recipient. These consequences could be
associated with caregivers' reactions to the process of care.
DESIGN: Association study based on cross-sectional data.
METHODS: Participants were people with dementia and their informal caregivers
living at home or in long-term care institutions. Data were collected between
November 2010-April 2012 using the Caregiver Reaction Assessment (with dimensions
of self-esteem, lack of family support, financial problems, disrupted schedule
and health problems) and associations were sought with informal caregiver burden,
quality of life and psychological well-being and with dementia sufferers'
neuropsychiatric symptoms, comorbidity and dependency in activities of daily
living using correlation coefficients.
RESULTS: Data from 2014 participants were used. Variability across countries was
noted, as well as differences between care at home and in long-term care
institutions. In general, self-esteem and lack of family support correlated with
caregiver burden and psychological well-being. Associations were also found
between disrupted schedule and caregiver burden, psychological well-being and
quality of life. Health problems were clearly associated with caregiver burden,
psychological well-being and quality of life.
CONCLUSION: Study results support links between the reactions of informal
caregivers of people with dementia and health outcomes. These may have
implications in terms of how services are addressed.
Tills döden skiljer oss åt – om att vara äldre omsorgsgivare
"Att vara anhörig är att få höra an till någon, att vara närstående är
att få stå någon nära. Anhörigskap är för de flesta inte att vara en
resurs, en funktion eller en kategori. Anhörigskap är relation, en
relation till en annan människa som man vill ha i sin närhet och vara
nära." Så börjar inledningen till antologin om det obetalda
omsorgsarbetet.
Tina och mormor
Vid sorg och död är den första reaktionen, för många, att skydda sitt barn genom att inte tala om det.Författaren Ann-Kristin Lundmark vill med sin tredje bok i serien om 10-åriga Tina, Tina och mormor, öppna upp för samtal inom ämnet. Sorg kan inte undvikas och ett barn kan inte alltid skyddas, men genom att prata om det som en vägledning kan många frågor besvaras och bidra till en enklare sorgbearbetning.
Tina har en intensiv vår med kompisar, skola och fotbollsträning och hinner inte träffa sin mormor så mycket som vanligt. Tina får lite dåligt samvete. En kväll vaknar hon och behöver gå på toa, men när hon ska gå och lägga sig igen hör hon prat från köket. Tina får veta att mormor är sjuk i cancer och snart ska dö. Efteråt är ingenting riktigt som förut och hela Tinas tillvaro rasar samman!
Trygghetscirkeln för ett reflekterande föräldraskap: COS-P i Sverige – kunskapsspridning och prövning av ett psykoedukativt föräldraprogram
Projektets avsåg att pröva ett anknytningsbaserat föräldrastödsprogram,
Trygghetscirkeln (COS-P), vars mål är att hjälpa föräldrar att nå fördjupad förståelse för
barns behov av känslomässigt stöd från sina föräldrar.
Prövningen av Trygghetscirkeln som komplement till övrig behandling genomfördes på
tre geografiskt spridda behandlingsenheter för familjer med små barn i Sverige. Efter
gruppledarutbildning genomfördes en RCT-studie där 52 föräldrar i åldern 18-44 år
(M=30 år) med barn under 58 månader (M=15 mån) randomiserades till att antingen få
behandling enligt planerad form (TAU), n=24 föräldrar, eller få behandling plus ett
tillskott av 8 ggr Trygghetscirkel i grupp (COS), n=28 föräldrar. Vid baslinjen (T1) fyllde
föräldrarna i självskattningsformulär avseende nivå av egen ångest (STAI), grad av
depressivitet (CES-D), grad av reflekterande förmåga (PRFQ) och nivå av föräldrastress
(SPSQ). Föräldrarna fyllde vidare i en anknytningsdagbok (AD). En diagnostisk DC:0-3R
profil sammanställdes utifrån journaldata, samspelet mellan förälder och barn
bedömdes kvalitativt (EAS) och en semistrukturerad djupintervju om förälderns inre
bild av sig själv och sitt barn (WMCI) värderades. Nya mätningar gjordes därefter vid sex
månader (T2) och 12 månader (T3) efter baslinjemätningen, med undantag för AD, den
diagnostiska profilen och djupintervjun som enbart gjordes vid T1 och T3. Efter
genomförda föräldragrupper utvärderades Trygghetscirkeln med hjälp av särskilda
frågeformulär riktade till föräldrar och till gruppledare. Som avslutning av projektet
gjordes öppna intervjuer dels med personal på respektive behandlingsenhet och dels
med ett bekvämlighetsurval av föräldrar.
Resultaten gav vid handen att både behandlare och föräldrar var mycket nöjda med
Trygghetscirkeln, som var stimulerande, gav en fördjupad kunskap och hjälpte
föräldrarna i sin föräldraroll. I COS-gruppen förändrades samspelskvalitet och framför
allt den inre bilden av föräldrarollen och av barnet signifikant mer än i TAU-gruppen. I
hela gruppen uppmättes över tid sänkt föräldrastress, reduktion av stressfaktorer i
omgivningen, bättre föräldra-barnrelation och mer åldersadekvat socioemotionell
utvecklingsnivå hos barnen. Den skattade nivån av egen psykiska hälsa, eller
självskattad reflekterande förmåga förbättrades emellertid inte i någon av grupperna.
Vid uppföljningen våren 2015 visade det sig att Trygghetscirkeln integrerats som en
väsentlig del i verksamheternas behandlingsutbud.
Rapporten lyfter fram att genomsnittsåldern för barnen i den undersökta gruppen var
låg, vilket ledde till en låg förekomst av individuella barnkliniska symtom. Problemen
var i huvudsak koncentrerade till föräldrafunktionen. Föräldrarna hade i allmänhet en
etablerad behandlingskontakt innan de bjöds in till studien vilket troligen medförde att
upplevelsen av den egna psykiska hälsa redan hade stabiliserats. Däremot förändrades
stress, samspelskvalitet och den inre bilden långsammare, vilket ledde till en mätbar
positiv förändring först vid uppföljningen efter 12 månader. Denna förändring var mer
tydlig hos COS-gruppen än hos TAU-gruppen.
7
Slutsatsen är att Trygghetscirkeln är ett föräldraprogram som uppskattas stort av både
föräldrar och gruppledare. Då Trygghetscirkeln syftar till ökad förståelse för hur det
egna förhållningssättet påverkar föräldrabeteendet, aktualiseras förälderns egna hinder
och svårigheter i mötet med materialet och gruppdiskussionerna. Detta stärker
betydelsen av erfarna gruppledare och att det sammanhang inom vilket
Trygghetscirkeln erbjuds får möjlighet att fungera som en trygg bas. Vi kan inte uttala
oss om Trygghetscirkeln som en generellt preventiv insats till alla föräldrar men vill
rekommendera den för riktade insatser till barn med identifierade risker för psykisk
ohälsa eller utvecklingsavvikelser samt som komplement till annan behandling där
större behov av barnkliniska insatser föreligger.
Uppdrag avseende nationella kompetenscentrum för anhörigstöd samt inom demensområdet m.m., regeringsbeslut
Regeringen gav den 7 maj Socialstyrelsen i uppdrag att se till att det på lång sikt finns ett nationellt kompetenscentrum för anhörigstöd och ett nationellt kompetenscentrum inom demensområdet.
Utbildning för anhöriga till hemmaboende personer med demenssjukdom. Kommentar och sammanfattning av utländska kunskapsöversikter
Den systematiska översikten visar att utbildningsprogram för anhöriga till personer med demenssjukdom minskar den upplevda bördan för anhöriga (måttlig effekt) och även anhörigas depression (liten effekt). Det vetenskapliga stödet är dock otillräckligt för att man ska kunna uttala sig om effekter på anhörigas livskvalitet och de sjukas flytt till särskilt boende. Utbildningsinsatsen är jämförd med ingen utbildning eller insatser som vanligtvis erbjuds, till exempel informationsmaterial till anhöriga.
Minskningen av den upplevda bördan bedöms vara värdefull för anhöriga och därför ha en praktisk betydelse. En svensk ekonomisk analys [3] visar att kostnaderna för att genomföra en utbildnings- och stödinsats för anhöriga är tämligen låga och påverkade livskvaliteten hos de anhöriga positivt. Detta kan innebära att liknande utbildnings- och stödinsatser är ett rimligt sätt att använda kommuners resurser.
Utveckling av stödet till anhöriga i Strängnäs kommun – en samverkansstudie mellan åtta FoU-enheter, åtta kommuner och Nationellt kompetenscentrum anhöriga (Nka) under tre år. Slutrapport:
I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. Staten har bidragit med cirka en miljard kronor i stimulansmedel
och den 1 juli 2009 infördes en förändring i Socialtjänstlagen som innebär att kommunerna är
skyldiga att erbjuda anhöriga stöd.
För att dra lärdom av det utvecklingsarbete som genomförts och fortfarande pågår har
Nationellt kompetenscentrum Anhöriga (NkA) tagit initiativ till denna undersökning för att i
samverkan med åtta av landets FoU-enheter kartlägga och följa utvecklingen av stödet till
anhöriga under tre år i åtta kommuner. I denna delrapport presenteras resultatet av den första
kartläggningen i Strängnäs kommun.
Kommunen ligger i norra delen av Södermanlands län och 1971 bildas nuvarande Strängnäs
kommun. Kommunen består av åtta kommundelar och tätorten heter Strängnäs. Antalet
innevånare var 32 419 personer år 2010. När det gäller stöd och omsorg är det politiskt
styrande organet Socialnämnden. Den verksamhet som bedriver det faktiska stödet är
socialkontoret där socialchefen är ytterst ansvarig och socialkontoret är indelat i tre olika
områden som var och en leds av en verksamhetschef.
Strängnäs kommun har en gemensam värdegrund som allt arbete skall utgå ifrån, så också
arbetet med anhörigstöd. Värdegrunden beskriver kommunens förhållningssätt och den
yttersta målsättningen är nöjda kommuninnevånare. År 2009 när den nya lagstiftningen kom
gjordes en kommunrevision angående anhörigstödet. Svaret på revisionen fastställer att varje
anställd inom kommunens socialtjänst har ett ansvar "att informera om vilka stödformer som
finns samt förmedla kontakt mellan stödbehövande och verksamheter som kan utgöra ett stöd
för varje anhörigas unika situation".
I Strängnäs kommun anställdes en anhörigkonsulent på 75 % i projektform den 1 mars 2007
och i september samma år invigdes Anhörigcentrum. Anhörigcentrum är en mötesplats för
människor som ger omsorg och stöd till någon anhörig eller vän. Här kan anhöriga träffa
andra i samma situation och delta i olika stödgrupper eller utbildningar och det finns också
möjlighet till enskilda samtal. Den anhörig som deltar i någon av Anhörigcentrums aktiviteter
kan få avgiftsfri avlösning till den närstående som är hemma
8
På Anhörigcentrum finns också en caféverksamhet och personalen på Anhörigcentrum
informerar om olika insatser som kommunen erbjuder. Därutöver finns en IT-portal på nätet
(Gapet) som är tillgängligt dygnet runt. Portalen riktar sig till alla åldrar och målgrupper och
ger den anhörige möjligheten att få kontakt med andra runt om i landet.
På anhörigcentrum finns även Resursteamet och den Uppsökande verksamheten.
Resursteamet arbetar med frågor som är kopplade till demenssjukdom eller annan kognitiv
svikt. Den uppsökande verksamhet vänder sig till personer som är 80 år och äldre och inte har
något bistånd från kommunen. På Strängnäs kommuns hemsida informerar man om det
anhörigstöd som finns i kommunen och det som lyfts fram som centralt är Anhörigcentrum.
Studien startar med en kartläggning av stödet till anhöriga i de utvalda kommunerna inom
områdena; äldreomsorg, verksamheter för personer med funktionsnedsättning samt individ
och familjeomsorg. Ytterligare en kartläggning genomförs år tre. Årligen genomförs
fokusgruppsintervjuer, en inom varje område. Första och sista året genomförs även en
enkätstudie och telefonintervjuer genomförs med ett slumpmässigt antal utvalda anhöriga i
kommunerna baserat på den enkät de fyllt i.
Inom de tre områdena i Strängnäs kommun samlades aktuell dokumentation in,
verksamhetscheferna intervjuades och en enkät skickades ut till enhetscheferna. Efter
kartläggningen utfördes fokusgruppsintervjuer där politiker, chefer, medarbetare, ideella
organisationer och anhöriga deltog. Namn på anhöriga samlades in och NkA har utifrån dessa
utfört en enkätundersökning med efterföljande telefonintervjuer.
Resultatet visar att Anhörigcentrum och dess personal gör ett gott arbete utifrån de resurser
som finns tillgängliga, men att verksamheterna måste ta ett mycket större ansvar och bidra till
att anhöriga får det stöd som de behöver och har rätt till. Den gemensamma värdegrunden i
Strängnäs kommun bör lyftas upp och diskuteras ytterligare och samverkan inom den egna
kommunen behöver utökas. Det behövs också mer information till anhöriga om vilket
anhörigstöd som finns. En strategi för hur anhörigstödet skall bedrivas, uttalade mål samt
handlingsplaner och stödplaner bör också utarbetas och anhörigstödet till de anhöriga som har
vuxna barn med funktionsnedsättning är i mycket stort behov av utveckling.
What qualitative research can contribute to a randomized controlled trial of a complex community intervention.
Using the case of a large-scale, multi-site Canadian Housing First research demonstration project for homeless people with mental illness, At Home/Chez Soi, we illustrate the value of qualitative methods in a randomized controlled trial (RCT) of a complex community intervention. We argue that quantitative RCT research can neither capture the complexity nor tell the full story of a complex community intervention. We conceptualize complex community interventions as having multiple phases and dimensions that require both RCT and qualitative research components. Rather than assume that qualitative research and RCTs are incommensurate, a more pragmatic mixed methods approach was used, which included using both qualitative and quantitative methods to understand program implementation and outcomes. At the same time, qualitative research was used to examine aspects of the intervention that could not be understood through the RCT, such as its conception, planning, sustainability, and policy impacts. Through this example, we show how qualitative research can tell a more complete story about complex community interventions.
Årsrapport för Svenska Palliativregistret verksamhetsåret 2015
2015 rapporterades 60 013 dödsfall vilket utgör 66 % av alla inträffade dödsfall. Antalet
rapporterade dödsfall är därmed i stort sett konstant 2013 – 2015 men andelen varierar
något då olika antal avlidit respektive år.
Geografiskt har andelen rapporterade utifrån folkbokföringskommun stigit minst 10 % i 51
kommuner, ligger inom +- 10 % i 172 kommuner samt sjunkit mer än 10 % i 68 kommuner
2015 jämfört med 2013.
I 84 % av rapporterade av vården väntade dödsfall 2015 anges att läkaren gjort en
dokumenterad medicinsk bedömning om att vården övergår i palliativ vård i livets slut. Det är
endast i 59 % av dessa fall som det också rapporteras att det finns ett dokumenterat
läkarsamtal om denna bedömning med patient eller om denne är oförmögen att delta med
närstående.
Den rapporterade tillgången av specialiserad palliativ vård (hospice + slutenvård +
specialiserad hemsjukvård + palliativ konsult/rådgivningsteam) varierar kraftigt mellan länen
från 6,9 till 23,1 %.
Medianvårdtiden inom den specialiserade palliativa slutenvården har sjunkit från 11 till 9
dagar och inom den specialiserade palliativa hemsjukvården ifrån 56 till 46 dagar. Detta går
emot grundprinciperna i det palliativa förhållningssättet där tidigt palliativt stöd har visat sig
vara av godo.
Cancer fortsätter att dominera som diagnos inom den specialiserade palliativa vården i
Sverige (87%) trots att patienter med andra sjukdomar kan ha lika stora behov.
Vårdkvaliteten är hög, men till exempel inom smärt- och symtomskattning finns det utrymme
för förbättring.
Resultatmässigt har för väntade dödsfall en sammanslagning av dokumenterade
brytpunktssamtal, ordination av inj-läkemedel mot ångest vid behov, smärtskattning samt
dokumenterad munhälsobedömning använts. Detta fortsätter att förbättras och var 2015
58,3 % - en förbättring med 2,5 % jämfört med 2014.
Symtomet illamående förekommer hos 15 procent av patienterna under sista veckan i livet.
Över åren har vi blivit bättre på att lindra symtomet, det förekommer huvudsakligen hos
cancerpatienter och två tredjedelar av dessa patienter har tillgång till någon form av
specialiserad palliativ kompetens.
Bland övriga viktiga indikatorer ses generellt ingen förändring mellan åren bland de väntade
dödsfallen beträffande andelen med trycksår eller andelen som haft dropp eller sondnäring
sista levnadsdygnet.
Svenska palliativregistret har fått sin första medicine doktor som byggt sin avhandling
huvudsakligen på registrets data. Ytterligare 2 vetenskapliga artiklar baserade på registerdata
har publicerats under 2015 där man dels konstaterar att hög ålder bland cancerpatienter är
en riskfaktor för sämre kvalitet och dels konstateras att patienter med KOL inte erbjuds
samma vårdinnehåll som cancerpatienter. Vidare har 4 uppsatser baserade på registerdata
kommit till registrets kännedom vars innehåll förtjänar att spridas.
Children of alcoholic parents: a review
Children of alcoholics are prone to genetic, environmental, and teratogenic risk factors. This review starts by outlining the developmental risks due to intrauterine exposure to alcohol. Furthermore, the overall findings from genetic research are summarized. A further section deals with the analysis of the environment of the family with an alcoholic parent. Within the section on psychopathology the special links to conduct disorders and delinquency, hyperkinetic disorders, substance abuse, anxiety and depression, and somatic problems are described. Special consideration is also given to the literature dealing with cognitive and neuropsychological functioning in the offspring of alcoholic parents. Finally, the limitations of current knowledge are emphasized.
Easy targets: a disability rights perspective on the ‘children as carers’ debate
This article looks at how the children of disabled parents are being defined as 'young carers', arguing that the way in which this is hap pening undermines both the rights of children and the rights of disabled people, Analysis of the social construction of 'children as carers' illustrates that researchers and pressure groups are colluding with the government's insistence that 'care in the community' must mean 'care by the community'.
Identifying adult children of alcoholics: methodological review and a comparison of the CAST-6 with other methods
Methods of identifying adult children of alcoholics are described and their psychometric properties are reviewed. These methods include self-report single questions and questionnaires and interview schedules. The CAST-6, a shortened version of the Children of Alcoholics Screening Test, is compared with a variety of these methods. The CAST-6 is confirmed as a useful brief screening measure. It was shown to be internally reliable, have good retest reliability and to agree well with other measures. Using a face to face interview as the comparison standard, however, a number of single questions performed equally as well as the CAST-6 and other more complex methods.
An outcome study of a time-limited group intervention program for bereaved children
Akad. Avhandling
Bereaved children are a hidden population. Although little is known about the experience of loss, grief and mourning in children, the literature suggested that, without successful intervention, irreparable harm to the child's cognitive, affective and behavioral functioning can result (Arthur & Kemme, 1964; Bendiksen & Roberts, 1975; Birtchnell, 1969; Bowlby, 1961; Brown, 1961; Gray, 1988). The present study evaluated treatment outcome of a time-limited, Children's Bereavement Program as measured by the Louisville Behavior Checklist, and the Revised-Children's Manifest Anxiety Scale. Subjects included children between the ages of 4-12 who lost a significant other to death. A pretest, posttest, follow-up, repeated measure, control group design (Campbell & Stanley, 1963) was used in the study. It was predicted that, compared to the controls, the experimental group would evidence at posttest and follow-up a reduction in grief induced anxiety and behavioral problems as a result of treatment. No significant differences were found between experimental and control groups on either instrument. However, significant differences were found for combined groups across time periods on ten out of fourteen subscales of the Louisville Behavior Checklist. Findings suggested that both the experimental and control groups evidenced a lessening of reported symptoms related to grieving at posttest and follow-up.
Barn i samhällsvård
Många barn riskerar att växa upp under svåra familjeförhållanden. Samhället väljer därför ibland att skilja barn från sina föräldrar för att placera dem på institution eller i familjehem.
Författaren presenterar i denna bok aktuell forskning om barn i samhällsvård och ger teoretiska utgångspunkter för förståelsen av relationer, separationer och barns olika sätt att bemästra svårigheter. Vi får under en tioårsperiod följa en grupp barn som på grund av föräldrarnas missbruk tidigt placerats på barnhem och sedan i familjehem. Författaren visar att barn, föräldrar, fosterföräldrar och socialarbetare alla är delaktiga i utfallet av samhällsvården - även om socialtjänsten och samhällsvillkoren anger ramarna.
Boken är avsedd för högskoleutbildning i psykologi, socialt arbete och social omsorg samt för socialsekreterare. Den är av stort intresse för alla som arbetar med utsatta barn och familjer.
Barn till psykiskt sjuk måste få ökat stöd
Caregiver burden among three-generation immigrant families in Israel
Child trauma questionnaire
Discrepancy between Mother and Child Perceptions of Their Relationship: I. Consequences for Adolescents Considered within the Context of Parental Divorce
Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.
Discrepancy between Mother and Child Perceptions of Their Relationship: I. Consequences for Adolescents Considered within the Context of Parental Divorce
Previous research has shown that parent-adolescent conflict is associated with adolescent adjustment. One possible source of conflict between parents and adolescents is the discrepant ways in which they perceive their relationship, which may contribute to adolescent adjustment difficulties. The present study examined the association between mother-adolescent discrepant views in their relationship and adolescent adjustment difficulties concurrently and longitudinally. In addition, the role of a family stressor, in this case parental divorce, in enhancing the discrepant views and moderating the relationship between discrepancy in perceptions and adolescent adjustment was examined. Results indicated that discrepancies in mother perception and adolescent perception of their relationship were associated with mother report of internalizing and externalizing behavior problems concurrently and longitudinally. Furthermore, discrepancies were significantly higher in divorced families than intact families, but divorce did not moderate the relationship between discrepancies and adolescent adjustment. Clinical implications and directions for future research are discussed.
Do community-based support services benefit bereaved children? a review of empirical evidence
Abstract
AIMS:
To consider the evidence of effect from English language, empirically based quantitative evaluations of community-based interventions for bereaved children; community-based interventions being understood as those taking place outside a clinical setting.
METHODS:
MedLine, PsychInfo, Applied Social Sciences Index and Sociological Abstracts were searched for documents containing the words 'child', 'bereavement' and 'program', 'group', 'intervention', 'support' or 'evaluation'. The criterion for inclusion was that studies use a control group or pre- and post-test measurements using a standardized instrument.
RESULTS:
Nine relevant studies were identified. However, empirical evidence of positive outcomes for children was limited and compromised by methodological weaknesses in the design of the studies. Small sample sizes, irregular attendance, high levels of attrition, short time scales between pre- and post-testing and difficulty in developing appropriate instrumentation, including assessment of adherence to the agreed intervention programme, all created problems.
CONCLUSIONS:
The case for universal inclusion of this group of children in such support programmes remains unproven, and further exploration of the outcomes of a range of different community interventions is required, with a specific focus on long-term and/or unwanted effects and evaluation of the basis for referral.
Döden angår oss alla. Värdig vård vid livets slut. SOU 2001:6
Effect of trauma on the mental health of Palestinian children and mothers in the Gaza Strip
A cross-sectional study was conducted among 286 Palestinian children 9-18 years of age and their mothers in the Gaza Strip. Traumatic events recollected by children living in areas of conflict, the prevalence of post-traumatic stress reactions and the relationship between children's and mothers' mental health were investigated. The Gaza Traumatic Events Checklist, Impact of Event Scale (IES) and General Health Questionnaire (GHQ) were used to measure outcome. Children experienced on average four traumatic events; one-third reported significant post-traumatic stress reactions. IES scores were higher among girls and mothers' GHQ scores significantly predicted children's IES scores.
Effects of coping skills training, group support, and information for spouses of alcoholics: A controlled randomized study
Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.
Familjevård i utveckling
Family-oriented program models, helpgiving practices, and parental control appraisals
Findings from 2 studies investigating sources of variations in parents' assessment of help-giving practices and personal control appraisals are reported. A total of 280 parents of young children with disabilities or at-risk for poor developmental outcomes participated. Parents were involved in early intervention and human services programs that differed along a continuum from professionally centered to family focused. Demographic characteristics showed no relationship to either help-giving practices or perceptions of personal control. In contrast, program characteristics were highly related to help-giving practices, and both program characteristics and help-giving practices were highly related to personal control.
Gait and activity in the elderly: implications for community falls-prevention and treatment programs
Gender, cash and informal care: European perspectives and dilemmas
Good grieving – an intervention program for grieving children
Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.
Good grieving – an intervention program for grieving children
Abstract
PURPOSE/OBJECTIVES:
To describe a program for grieving children including the agenda, activities, and logistics of organizing the program.
DATA SOURCES:
Clinical observations and evaluations from the program; literature review.
DATA SYNTHESIS:
A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support.
CONCLUSIONS:
The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs.
IMPLICATIONS FOR NURSING PRACTICE:
Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.
Hvad med os? Etnicke minoriteter – en udfordring I fremtidens œldreomsorg
Hvad med os? Etnicke minoriteter – en udfordring I fremtidens œldreomsorg
Institutionella samtal – Struktur, moral och rationalitet. Några synpunkter på värdet av samtalsanalys för att studera mötet mellan experter och lekmän
On Chronic Illness and Quality of Life: A Conceptual Framework
In this paper I focus on the topic of chronic illness in the context of quality of life. I offer a conceptual explanation of these notions and then try to systematise the various species of suffering connected with chronic illness. Suffering in illness rarely attracts systematic analysis. Part of the reason for this is that the topic is in a way an aspect of common sense. It has an air of self-evidence and seems not to require analysis. However, it is my contention that the nature of human suffering is not at all self-evident. In many ways we know very little about the content and extent of suffering. And, although it may not be sensible to borrow traditional scientific techniques for the study of suffering, we need as much intellectual penetration and rigorous analysis in order to clarify the nature of suffering as for any other scientific investigation. Moreover, there are good reasons for saying that we ought to direct much more of our attention to this humanistic aspect of medicine. We ought to remember that the existence of suffering is one of the main motives, if indeed not the most important motive, for undertaking the medical enterprise.
Parenting stress in parents of children with attention deficit hyperacitivity disorder and parents of learning disabilities
Parenting a child with ADHD can challenge parenting resources and coping. Increasingly, researchers are examining the relationship between the behavior of the child with ADHD and family functioning. While studies have shown inceased parenting stress in parents of children with ADHD, these studies have compared children with ADHD to non-disabled children. This study compares reports of parenting stress among mothers of children with ADHD, mothers of children with learning disabilities and mothers of non-referred children. Results showed that parenting stress was highest for mothers of children with ADHD. Increased parenting stress was associated with child characteristics and, in particular, with externalizing behavior problems
Parenting With a Sensory or Physical Disability
Patienternas psykiatri
Pedagogiskt familjestöd vid schizofreni
Posttraumatic stress disorder across two generations of Cambodian refugees
OBJECTIVE:
To examine the expression of war-related trauma as manifested by DSM-III-R rates of posttraumatic stress disorder (PTSD) and major depressive disorder in two generations of Cambodian refugees living in the western United States.
METHOD:
A probability sample of 209 Khmer adolescents and one of their parents were interviewed using portions of the Schedule for Affective Disorders and Schizophrenia for School-Age Children-Epidemiologic Version and the PTSD section of the Diagnostic Interview for Children and Adolescents. Interviews were conducted in English by a master's-level clinician with a Khmer interpreter.
RESULTS:
PTSD was found to be significantly related across parent-child generations. A nonsignificant generational trend was also found for depressive disorders. A number of environmental variables measured in the study (amount of reported war trauma, loss, living arrangements, treatment received, socioeconomic status) were not related to these findings. Parents were more likely to report an earlier onset of PTSD symptoms.
CONCLUSIONS:
This study suggests that PTSD in refugees may cluster in families. Whether this phenomenon is caused by a genetic susceptibility to trauma awaits further research. PTSD and depressive disorders in refugee populations, while often comorbid, appear to follow different courses over time.
Prenting Stress Index: Professional Manual (3rd ed).
The PSI addresses the early identification and assessment needs recognized by the Report of the Surgeon General's Conference on Children's Mental Health (January 2001). It is well-suited for use in primary health care and pediatric practices, as well as in other settings and programs that serve at-risk children and families or provide early childhood educational and developmental experiences. The PSI is designed for the early identification of parenting and family characteristics that fail to promote normal development and functioning in children, children with behavioral and emotional problems, and parents who are at risk for dysfunctional parenting. It can be used with parents of children as young as one month.
The PSI was developed on the theory that the total stress a parent experiences is a function of certain salient child characteristics, parent characteristics, and situations that are directly related to the role of being a parent. The PSI identifies dysfunctional parenting and predicts the potential for parental behavior problems and child adjustment difficulties within the family system. Although its primary focus is on the preschool child, the PSI can be used with parents whose children are 12 years of age or younger.
The PSI consists of 120 items and takes less than 30 minutes for the parent to complete. It yields a Total Stress Score, plus scale scores for both Child and Parent Characteristics, which pinpoint sources of stress within the family.
The child characteristics are measured in six subscales: Distractibility/Hyperactivity, Adaptability, Reinforces Parent, Demandingness, Mood, and Acceptability. The parent personality and situational variables component consists of seven subscales: Competence, Isolation, Attachment, Health, Role Restriction, Depression, and Spouse. The PSI is particularly helpful in:
Early identification of dysfunctional parent-child systems.
Prevention programs aimed at reducing stress.
Intervention and treatment planning in high-stress areas.
Family functioning and parenting skills.
Assessment of child-abuse risk.
Forensic evaluation for child custody.
Validated With Diverse Populations
The PSI has been empirically validated to predict observed parenting behavior and children's current and future behavioral and emotional adjustment, not only in a variety of U.S. populations but in a variety of international populations. The transcultural research has involved populations as diverse as Chinese, Portuguese, French Canadian, Italian, and Korean. These studies demonstrated comparable statistical characteristics to those reported in the PSI Manual, suggesting that the PSI is a robust diagnostic measure that maintains its validity with diverse non-English-speaking cultures. This ability to effectively survive translation and demonstrate its usefulness as a diagnostic tool with non-English-speaking populations suggests that it is likely to maintain its validity with a variety of different U.S. populations.
Components
The Manual has 118 pages of information, including reference group profiles and case illustrations, Hispanic norms, and expanded norms by age. A 5th-grade reading level is required.
The PSI consists of a 120-item test booklet with an optional 19-item Life Stress scale and an all-in-one self-scoring answer sheet/profile form. It yields 17 scores, including seven Child Domain scores, eight Parent Domain scores, and a Total Stress score, plus the optional Life Stress score.
The PSI Short Form is a direct derivative of the full-length test and consists of a 36-item self-scoring questionnaire/profile. It yields a Total Stress score from three scales: Parental Distress, Parent-Child Dysfunctional Interaction, and Difficult Child.
Replication and extended analysis of behavior state, environmental events, and related variables among individuals with profound disabilities
Knowledge from previous studies pertaining to state behavior of individuals with profound and multiple disabilities and its relation to other environmental and physiological variables was replicated and extended. Behavior state and environmental data were collected over a 5-hour period for most of 66 students with profound disabilities from 21 educational settings. Results showed general consistency in state patterns and profile groupings with previous investigations, a strong relation between different state profiles and measures of development, and consistency of state patterns across CA levels. Transitional probabilities and z scores were used to confirm changes in state behavior of half of the subjects following primarily adult interactions. Results were discussed in relation to theoretical implications and intervention recommendations.
Sammenhæng i omsorgkæden for demente og deres pårørende - pleje, støtte og aflastning i tiden før plejehjem.
Sibling Relation Across the Life Span
When one begins to examine the existing literature dealing with siblings, one soon becomes aware that many separate domains of sibling research exist and that there is little connection between them; for example, sibling relationships in early childhood, genetic and environmental influences on individual differences between siblings, dysfunctional sibling relation ships, adult sibling helping relationships, sibling violence and abuse, and so on. The author's aim in writing this book was to attempt to bring together for the first time studies from diverse areas of sibling research into a single volume. The book is a summary and integration of the various domains of sibling studies, extending across the life span where studies exist to make this possible. Although many gaps in the sibling research literature within and between domains of study and over the life span still exist, it is hoped that this book will motivate others to help fill in the gaps by suggesting direc tions where further research is needed.
Sjukvårdspersonalens upplevelser av ett funktionshindrat barns födelse
Småbarnsföräldrar med rörelsehinder
Staff attitudes toward family involvement I residential treatment centers for children
OBJECTIVES:
The goals of this study were to determine the extent of staff members' support for family involvement in residential treatment centers for children, to examine staff members' beliefs about families and the consequences of their involvement, and to examine the relationship between staff members' support of family involvement and their characteristics, experiences, and beliefs.
METHODS:
A total of 267 staff members at three residential treatment centers for children with psychiatric disorders or mental retardation or both responded to a survey about their experiences with families, beliefs about families, and support for family involvement.
RESULTS:
Staff members were very supportive of greater family involvement, although they showed more support for families in the role of service recipients than as decision makers. However, staff members did not believe in family reunification as a goal for the majority of children served. The strongest predictors of staff support for family involvement were positive general beliefs about clients' families, the perception that family involvement was advantageous, and the endorsement of fewer reasons to discourage family involvement.
CONCLUSIONS:
Residential programs seeking to create a more receptive climate for families should help staff members establish positive attitudes about the families they serve and about families' potential role in successful treatment
The Neonatal Behavioral Assessment Scale
Vändpunkten - Att arbeta med barn till alkoholister
Vändpunkten. Att arbeta med barn till alkoholister
The Family Therapy of Drug Abuse and Addiction
Use of a symptom scale to study the prevalence of a depressive syndrome in young adolescents
The entire student enrollment (n = 624) in a public junior high school in Raleigh, North Carolina were visited in their homes between October 1978 and February 1979. Eleven (2.9%) of 384 students completing the Center for Epidemiologic Studies self-report depression scale reported symptoms patterns consistent with the Research Diagnostic Criteria for major depressive disorder. These 11 subjects were concentrated in the top 12% of the distribution of symptom scores and had symptom prevalences exceeding those in the overall study population by a factor of three or more. Black males from low income households predominated. A self-report questionnaire may be usable to detect a depressive "syndrome" in young adolescents. The prevalence of such a syndrome is similar to prevalence estimates for adults and young adolescents, but considerably lower than estimates derived from total scale scores and cutoff points. A syndrome-oriented analytic approach for symptom scales should be explored as an alternative to the use of cutoff scores for epidemiologic studies of psychiatric disorders.
Exploring the impact of parental post-traumatic stress disorder on military family children: A review of the literature
OBJECTIVES:
The number of UK service personnel who have a diagnosis of PTSD is unclear, but there has been a recent increase in referrals to services for PTSD symptomology. It is imperative to understand the impact this may have on the children of affected service families. This review of literature aimed to explore and provide insight into the experiences of services children whose parent has a diagnosis of PTSD.
DESIGN:
A comprehensive review of the literature.
DATA SOURCES:
Online databases CINAHL, MEDLINE, psychARTICLES, The Psychology and Behavioural Sciences Collection and PILOTS were searched.
REVIEW METHODS:
The studies were chosen in keeping with a specified inclusion and exclusion criteria. The literature was critically analysed and key themes identified through the strategy of thematic analysis.
RESULTS:
Five studies met the inclusion criteria. Three key themes were identified from the five articles; secondary traumatisation; impact on the child's mental health; and impact on the child's adult relationships.
CONCLUSION:
The findings highlighted the prevalence of secondary traumatisation and a potential negative impact on the child's mental health and relationships. However, literature used in the review was conducted in countries outside of the UK, therefore the comparison of results may be compromised. This review identifies the paucity of research on this topic and highlights the need for UK based research to be carried out in this area.
Externalizing Outcomes of Youth with and without ADHD: Time-Varying Prediction by Parental ADHD and Mediated Effects
Although parental attention-deficit/hyperactivity disorder (ADHD) is a risk factor for multiple negative youth outcomes, it is unknown how change in parental ADHD symptoms over time affects change in child ADHD symptoms; moreover, mediators of these predictions are largely unknown. Parents of 230 5-10 year-old children (68 % male) with (n = 120) and without ADHD (n = 110) were followed prospectively for 6-7 years across three separate waves. Parents self-reported their ADHD and depression symptoms and similarly rated offspring ADHD, oppositional defiant disorder (ODD), and conduct disorder (CD) symptoms; youth self-reported their substance use. Temporally-ordered mediators consisted of parental expressed emotion (EE), derived from the Five Minute Speech Sample, and self-reported positive and negative parenting behavior. Controlling for key demographics and parental depression symptoms, increasing parental ADHD symptoms were a time-varying predictor of worsening youth ADHD and ODD, although it was unrelated to change in CD and alcohol/substance use. Next, although EE facets (i.e., criticism, emotional over-involvement) did not mediate these predictions, negative parenting behavior significantly mediated predictions of youth ADHD (and marginally in predictions of ODD) from parental ADHD symptoms. These quasi-experimental findings suggest that parental ADHD symptoms are a potential unique causal risk factor for offspring ADHD and ODD; also, preventing negative parenting behavior secondary to parental ADHD symptoms is critical to improve trajectories of youth ADHD and ODD. We consider parental ADHD symptoms and family factors underlying emergent externalizing problems utilizing a developmental psychopathology framework, including implications for intervention and prevention.
Keeping the family balance – adult daughters´ experiences of roles and strategies when supporting caring fathers
The Scandinavian countries represent a progressive approach to gender equality and transitions of traditional gender roles but little attention has been paid to gender equality in old age and how normative constructions of gender intersect in the lives of family carers. The aim of this study was to understand how adult daughters experience their roles and strategies when supporting fathers caring for an ill mother. A sample of eight daughters shared their experiences through in-depth interviews. The findings show that the daughters provide substantial and crucial effort and are intimately involved in the caring for their father and the sole contributors towards the emotional support of their fathers. They tend to devote a lot of energy towards picturing their family as 'normal' in terms of the family members adopting traditional roles and activities inside as well as outside the family context. In conclusion, the lack of understanding about gender as a 'norm producer' is something that needs to be further elaborated upon in order for professionals to encounter norm-breaking behaviours. The daughters' position as family carers is often assumed and taken for granted since the intersecting structures that impact on the situations of the daughters are largely invisible.
De skandinaviska länderna representerar en progressiv syn på jämställdhet och förändringar av traditionella könsroller, men lite uppmärksamhet har riktats mot jämställdhet i hög ålder och vad som händer när normativa genuskonstruktioner möter erfarenheter hos äldre anhörigvårdare. Syftet med denna studie var att förstå hur vuxna döttrar erfar sina roller och strategier när de stödjer fäder som tar hand om en sjuk mor. Ett urval av åtta döttrar delade sina erfarenheter i djupintervjuer. Resultaten visar att döttrar ger betydande insatser och är intimt involverade i att ta hand om sin far och är den enda bidragsgivare av emotionellt stöd till sina fäder. Döttrarna ägnar stor energi att framställa familjesituationen som 'normal' genom att anta traditionella roller och verksamheter såväl inom som utanför familjen. Förståelse för genus som normskapare är något som måste beforskas ytterligare för att yrkesverksamma ska kunna möta normbrytande beteenden. Döttrars position som anhörigvårdare tas ofta förgiven eftersom de intersektionella strukturer som påverkar döttrar till vårdande fäder i stort sett är osynliga.
The Efficacy of Cognitive Behavioral Therapy for Adults With ADHD: A Systematic Review and Meta-Analysis of Randomized Controlled Trials
OBJECTIVE:
To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms.
METHOD:
A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted.
RESULTS:
Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004).
CONCLUSION:
These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.
Adult Attention Deficit Hyperactivity Disorder and Parenting Styles
The aim of the present study was to compare the parenting styles in parents with and without adult attention deficit hyperactivity disorder (ADHD) who had children with ADHD. It was a case-control study with convenience sampling strategy. Participants were recruited from the parents of previously diagnosed children with ADHD referred to Imam Hossein Hospital, Tehran/ Iran. Ninety parents with adult ADHD and 120 normal parents were chosen by Conner's Adult ADHD Screening Scale (CAARS) and psychiatrist interview. Using Baumrind Parenting Styles Questionnaire and Arnold Parenting Scale, parenting styles were assessed in both the groups. Results from independent samples t-test indicated that Authoritarian parenting style (F = 0.576, p 0.022) and Over reacting style (F = 7.976, p 0.045) were significantly higher in cases. On the other hand, controls were using Permissive style (F = 0.131, p 0.044) more than cases. The results are consistent with prior studies; these findings can improve the content of parent training for children with ADHD, who have adult ADHD themselves.
An integrated review of interventions to improve psychological outcomes in caregivers of patients with heart failure
PURPOSE OF REVIEW: This article examines interventions aimed at improving
psychological outcomes (e.g., caregiver burden, quality of life, anxiety,
depression, perceived control, stress mastery, caregiver confidence and
preparedness, and caregiver mastery) in family caregivers of patients with heart
failure.
RECENT FINDINGS: Eight studies meeting the inclusion criteria were included in
the review. The most common intervention involved psychoeducation facilitated by
a nurse (6/8) and supplemented with a combination of follow-up face-to-face
sessions (2/6), home visits (2/6), telephone calls (3/6), and telemonitoring
(3/6). Two studies used a support group intervention of four to six sessions.
Half of the interventions reported a significant effect on one or more primary
outcomes, including caregiver burden (n = 4), depressive symptoms (n = 1), stress
mastery (n = 1), caregiver confidence and preparedness (n = 1), and caregiver
mastery (n = 1).
SUMMARY: Compared with dementia and cancer family caregiving, few interventions
have been evaluated in caregivers of patients with heart failure. Of the existing
interventions identified in this review, considerable variability was observed in
aims, intervention content, delivery methods, duration, intensity, methodological
rigor, outcomes, and effects. Given this current state of the science, direct
comparison of heart failure caregiver interventions and recommendations for
clinical practice are premature. Thus, research priority is strongly warranted
for intervention development and testing to enhance heart failure caregiver
support and education.
Anhöriga som ger insatser till närstående med stroke. En kunskapsöversikt som beskriver olika stödprogram för anhöriga. 2016:2
På senare år har olika typer av stödprogram utvecklats, riktade till anhöriga som vårdar, hjälper eller ger stöd till personer med stroke. Det finns dock ingen konsensus kring vilket innehåll stödprogrammen bör ha, om en viss typ av stödprogram är mer effektiva och bör rekommenderas före andra eller om det saknas en viss typ av stödprogram. Syftet med denna kunskapsöversikt var därför att identifiera och presentera relevant litteratur som beskriver stödprogram riktade till anhöriga, som på olika sätt ger stödinsatser till vuxna personer med stroke, samt stödprogrammens betydelse och eventuell effekt för anhöriga. Syftet var också att ge rekommendationer för insatser inom vård och omsorg och för framtida forskning.
Anhöriga till äldre personer med psykisk ohälsa. Kunskapsöversikt 2016:1
I denna kunskapsöversikt är vuxna anhöriga till en äldre person med psykisk ohälsa fokus. Eftersom psykisk ohälsa hos äldre skiljer sig från psykisk ohälsa hos yngre vuxna behöver situationen för dessa anhöriga beskrivas och deras specifika behov och stöd lyftas fram. Kunskapsöversikten inleds med en bakgrund till psykisk ohälsa hos äldre. Därefter följer en kort beskrivning av vård och omsorg för äldre med psykisk ohälsa, vilket är ett komplext område med många olika vårdaktörer. Slutligen presenteras forskning om anhöriga till vuxna med psykisk ohälsa och anhöriga till äldre.
Impact on professional carers of structured interviews with families
This article describes a Swedish study exploring the impact of a structured assessment process on both family and professional carers. A total of 20 professional carers conducted in-depth assessments with 245 family carers and were later interviewed about their experiences. The interviews indicated that the assessment process had provided valuable new insights and had challenged many existing preconceptions. They also afforded carers the opportunity to explore difficult emotional issues, suggesting the need to develop services to help carers deal with their feelings.
Barn till föräldrar med cancer – hur många berörs och vilka är konsekvenserna i ett livsloppsperspektiv? Nka Barn som anhöriga 2016:1
Rapport nr 5 i projektet "Barn som anhöriga", som genomförs av CHESS och institutionen för socialt arbete vid Stockholms universitet i samarbete med Nationellt kompetenscentrum anhöriga (Nka) och Linnéuniversitetet i Kalmar. Rapportens syfte är att belysa hur vanligt det är att barn upplever att en förälder drabbas av en cancersjukdom, vilka konsekvenser detta har för skolprestationer i årskurs 9 samt för hälsa och social situation för unga vuxna i åldern 18–40 år.
International Classification of Functioning, Disability and Health
The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains. As the functioning and disability of an individual occurs in a context, ICF also includes a list of environmental factors.
ICF is the WHO framework for measuring health and disability at both individual and population levels. ICF was officially endorsed by all 191 WHO Member States in the Fifty-fourth World Health Assembly on 22 May 2001(resolution WHA 54.21) as the international standard to describe and measure health and disability.
Since 2001, ICF has been demonstrating a broader, more modern view of the concepts of "health" and "disability" through the acknowledgement that every human being may experience some degree of disability in their life through a change in health or in environment. Disability is a universal human experience, sometimes permanent, sometimes transient. It is not something restricted to a small part of the population.
ICF focuses on impact. This creates a foundation and a common framework allowing all conditions to be compared using a common metric - the impact on the functioning of the individual.
Furthermore, ICF looks beyond the idea of a purely medical or biological conceptualization of dysfunction, taking into account the other critical aspects of disability. This allows for the impact of the environment and other contextual factors on the functioning of an individual or a population to be considered, analyzed, and recorded.
International Classification of Functioning, Disability and Health Geneva
Stucki G: International Classification of Functioning, Disability, and Health (ICF): A promising framework and classification for rehabilitation medicine. Am J Phys Med Rehabil 2005;84:733–740.
Interpreting the communication of people with profound and multiple learning difficulties
The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Interventions to reduce the burden of caregiving for an adult with dementia: A Meta-analysis
Kommunernas stöd till anhöriga som vårdar äldre : Ett brukarperspektiv (Meddelande / Länsstyrelsen, Jönköpings län ; 2001:30).
Kommunernas stöd till anhöriga som vårdar äldre : ett brukarperspektiv. Meddelande 2001:30
Kommunerna har i socialtjänstlagen ett uttalat ansvar för att genom stöd och avlösning underlätta för närstående som vårdar långvarigt sjuka, äldre och personer med funktionshinder. Syftet med denna rapport var att belysa de anhörigas upplevelse av de insatser som kommunerna har att erbjuda. 6 anhörigvårdare från olika kommuner i Jönköpings län har intervjuats. 4 av de intervjuade har på eget initiativ tagit en första kontakt med kommunen. övriga fick hjälp av personal i samband med sjukhusvistelse med förmedling av den första kontakten. Kontakterna har lett till ökade stödinsatser. Anhörigvårdarna är nöjda med stödet. Stödformer som avlösning, kontakter och träffar/studiecirklar upplevs som betydelsefulla.
Kommunernas stöd till anhöriga som vårdar äldre : ett brukarperspektiv. Meddelande 2001:30
Kommunerna har i socialtjänstlagen ett uttalat ansvar för att genom stöd och avlösning underlätta för närstående som vårdar långvarigt sjuka, äldre och personer med funktionshinder. Syftet med denna rapport var att belysa de anhörigas upplevelse av de insatser som kommunerna har att erbjuda. 6 anhörigvårdare från olika kommuner i Jönköpings län har intervjuats. 4 av de intervjuade har på eget initiativ tagit en första kontakt med kommunen. Övriga fick hjälp av personal i samband med sjukhusvistelse med förmedling av den första kontakten. Kontakterna har lett till ökade stödinsatser. Anhörigvårdarna är nöjda med stödet. Stödformer som avlösning, kontakter och träffar/studiecirklar upplevs som betydelsefulla.
Kris och utveckling
Människans liv kantas av psykiska kriser. En del utlösta av plötsliga och oväntade, svåra händelser; andra hör det normala livet till. Krisen är ofta en förutsättning för utveckling och mognad, men den kan också leda till livslång psykisk invaliditet om inte den drabbade får sakkunnig hjälp
Det är trettio år sedan den första utgåvan av Johan Cullbergs klassiska bok Kris och utveckling kom 1975. Den har lästs och uppskattats av hundratusentals svenskar - såväl av studenter som av människor som själva befinner sig i kris eller kommer i kontakt med människor i krislägen. Den har också översatts till flera andra språk.
Mycket i samhället, liksom inom psykiatrin, har förändrats. Det har inneburit att en omarbetning av boken känts angelägen, även om grundstrukturen står kvar. Kvar står också den hoppfulla synen på krisen som en hävstång för den mänskliga utvecklingen. Boken har kompletterats med ett avsnitt om katastrofpsykiatri och sena stressreaktioner av docent Tom Lundin.
Kvalitet i äldreomsorg ur ett anhörigperspektiv
Nationellt kompetenscentrum anhöriga, Nka, har tagit fram rapporten "Kvalitet i äldreomsorg ur ett anhörigperspektiv" på uppdrag från Socialdepartementet. Rapporten ingår i den nationella kvalitetsplanen för äldreomsorgen.
I rapporten framgår det tydligt att trygghet är själva förutsättningen för att kunna skapa bästa och mesta möjliga välbefinnande för anhöriga och äldre närstående. Andra viktiga byggstenar är tillhörighet, delaktighet och betydelsefullhet. Det finns också ett behov av kompetensutveckling – både i verksamheterna och hos de anhöriga. I kunskapssammanställningen framgår också att anhöriga och äldre närstående tenderar att bemötas och behandlas olika beroende på den utbildning, arbete och social position personen har. Detsamma gäller kön, etnisk tillhörighet, trosuppfattning, funktionsnedsättning, sexuell läggning och ålder. Rapporten tar upp en rad åtgärder för att utveckla kvaliteten i vården och omsorgen för äldre ur ett anhörigperspektiv.
Mammor med ADHD – Upplevelser av föräldragupp på barnhälsovårdscentral samt av en anpassad självhjälpsgrupp
Syftet med denna kvalitativa studie var att undersöka upplevelser av gruppbaserat föräldrastöd hos mammor med Adhd som deltagit i en universell föräldragrupp på barnhälsovårdscentral (BVC) samt i en anpassad självhjälpsgrupp (Mammagruppen). Mammagruppen bestod av fem mammor med diagnosen Adhd, en hade även Asperger syndrom. Med ett bortfall deltog fyra av dem i studien. Tre av informanterna deltog även i föräldragrupp på BVC. Deras barn var 0-2 år gamla utan uttalade problem. Datainsamling skedde genom semistrukturerade intervjuer och en induktiv tematisk analys resulterade i två huvudteman; Samhörighet och Stöd. Resultatet visar att informanternas upplevelser av Mammagruppen blev övervägande positiva och upplevelser av föräldragruppen på BVC blev övervägande negativa. Några grundläggande faktorer som bidrog till detta var huruvida de har upplevt samhörighet i grupperna samt om de har fått utrymme till att samtala om sina egna behov och känslor. Detta bidrar med unik kunskap och belyser det upplevda behovet av ett anpassat stöd. Det behövs vidare forskning innan vi kan säga att det finns skillnader.
Men do care! A gender-aware and masculinity-informed contribution to caregiving scholarship.
In caregiving literature, it is often the female gender that has been the focus of attention,
and in particular women's unpaid labor. Studies also tend to make comparisons
between men's and women's caregiving, using men's caregiving experiences to show
not only that women face greater burdens, but also that men's needs can be disregarded.
This means that while gender analyses are not uncommon in the caregiving literature,
gender tends to be equated with womanhood. The research problem that this dissertation
addresses is therefore the gender bias that characterizes caregiving scholarship
at present and the fact that this bias is impeding us from moving the debates on
care and caregiving forward. The aim of the dissertation is twofold. Firstly, it attempts
to contribute to the rectification of the gender bias in question by focusing on men's
caregiving and answering the following research questions: What motivates men to
provide care for their elderly parents? How do adult sons experience caregiving? What
do adult sons think that care and caregiving are, i.e. what are their perspectives on
care? Secondly, this dissertation also aims to explore whether a gender-aware and
masculinity-informed perspective can be used to enhance our understanding of caregiving.
Thus, through a phenomenological analysis of interviews with 19 caregiving
adult sons and sons-in-law, this dissertation discusses how motives, experiences and
perspectives, which have so far been interpreted as unique to women, are also matters
that men talk about and consider important in caregiving. The dissertation argues
therefore that much could be gained if we were to rectify the gender bias that characterizes
the literature on family caregiving and explore caregiving men in the genderaware
and masculinity-informed way that is lacking in this literature at present. Inspired
by the debate within studies of masculinity, the dissertation argues that within
the debate on care there is a hegemony of care which has so far tended to exclude
men's perspectives on caregiving because literature on family caregiving has regarded
women as the ideal caregivers. This dissertation shows that a gender-aware and masculinity-informed
perspective on care can increase our understanding of family caregiving
and contribute to the rectification of the gender bias that care research suffers
from. Against this backdrop, it is proposed that caregiving men should not solely be
regarded as empirically interesting. This is because they are an unexploited and theoretically
profuse source of information about caregiving.
Keywords: care, family caregiving, gender, men, masculinity, motive, experience, perspective
Oskars pappa har en CP-skada
illustrationer: Eva Akne
Barn/ungdom
Här får vi en beskrivning av hur det kan vara att ha en förälder med CP-skada.
Parental PTSD, adverse parenting and child attachment in a refugee sample
In contrast with traumatic experiences, there is a dearth of studies on the link between trauma symptoms, disconnected (frightened, threatening and dissociative) parenting behavior, extremely insensitive parenting behavior and child attachment. This study extends previous work on the impact of posttraumatic stress disorder (PTSD) on families by studying the unique contribution of disconnected and extremely insensitive parenting behavior on child attachment in a highly traumatized sample of 68 asylum seekers and refugees and their children (18-42 months). The results show that parental symptoms of PTSD are directly related to children's insecure attachment and disorganized attachment. The greatest proportion of the risk could be attributed to factors related to the dyad and not the family. A mediation effect of adverse parenting behavior was not confirmed. On the one hand the results indicate the need for an effective treatment of PTSD symptomatology while on the other hand the results indicate the need for clinical attention to insecure attachment relationships.
Negotiating lay and professional roles in the care of children with complex health care needs
eywords:
parental involvement;children with complex health care needs;role negotiation;nursing roles;community-based care
Negotiating lay and professional roles in the care of children with complex health care needs
Background. Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).
Aims of the paper. To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.
Design. Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.
Findings. From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.
Conclusion. This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent–professional relationships that are characterized by conflict rather than partnership.
Närståendes vård av äldre : Anhörigas och professionellas perspektiv : Anhörig 300.
Promoting preparedness for family caregiving – a randomized controlled intervention in palliative care
Background: Patients with incurable illness are increasingly being cared for in their homes with the help of palliative home care. However, in this system family caregivers also play an important role and often take a great responsibility for the patient's care. Family caregivers often lack preparedness for the situation, which could have negative consequences on their health and wellbeing.
Methods: The overall aim of this thesis was to develop and test a psycho-educational intervention for family caregivers in specialised palliative home care and to study processes and effects of the intervention. The psycho-educational intervention was developed based on the theoretical framework of Andershed and Ternestedt with focus on family caregivers' need for education and practical and emotional support. The intervention was delivered by health professionals and tested as a randomised controlled trial (RCT) at 10 specialised palliative home care settings, including an intervention arm and a control arm with standard support. The thesis includes four studies of which two (I, II) had a qualitative design and focused on processes involved in or considered relevant for the intervention. Two studies (III, IV) had a quantitative approach and focused on the effects of the intervention. The overall aim of the intervention was to improve family caregivers' feelings of preparedness for caregiving. In total, 194 family caregivers participated in the RCT with 96 family caregivers in the control arm and 98 in the intervention arm.
Aim and results of studies: The aim of Study I was to study how family caregivers' experienced their preparedness for caregiving in palliative care. The results showed that preparing for caregiving was viewed as an ongoing process by family caregivers and that it was related to the process of preparing for the patient's death.
The aim of Study II was to explore the experiences of delivering and participating in the intervention from the perspectives of health professionals and family caregivers. The intervention was generally perceived as a positive experience and both groups highlighted that it could be used a tool to support family caregivers to become better prepared.
The aim of Study III was to investigate the effects of the intervention compared to standard support in short- term and long-term. The results showed that the intervention had significantly improved family caregivers' feelings of preparedness for caregiving both in short-term and long-term.
The aim of Study IV was to investigate the characteristics of family caregivers who did not benefit from the intervention. The results indicated that family caregivers who did not benefit were significantly less vulnerable at baseline than those who did. Hence, they might not have had the same need for the intervention to become better prepared.
Conclusion: In conclusion of the four studies, the psycho-educational intervention could be valuable as a part of the health professional work to support family caregivers and increase their chances to become better prepared for caregiving. For the development of future interventions, it is important that family caregivers who are perceived as vulnerable are not excluded from participating, because they could be in most need of them.
Psykologilexikon [Online].
Samverkan kring gravida med missbruksproblem: En studie av Mödra-Barnhälsovårdsteamet i Haga. Nka Barn som anhöriga 2016:2
Studie med syfte att belysa arbetet vid Mödra- och barnhälsovårdsteamet i Haga, som är en vårdenhet specialiserad på gravida kvinnor och nyblivna föräldrar med missbruksproblem samt deras barn. Intresset riktades mot hur arbetet på mottagningen var upplagt, kännetecken hos patientgruppen samt hur och i vilken mån samverkan med andra verksamheters bedrevs. De huvudsakliga resultaten visade att det i patientgruppen fanns en relativt stor variation med avseende på sådant som boendesituation, civilstånd och sysselsättning. Denna rapport kommer endast att vara tillgänglig som pdf.
Slutrapport adhd2 – ett föräldrastödsprogram på ADHD-center
Stöd till anhöriga – erfarenheter från åtta kommuner 2010 – 2013 Slutrapport
Så är det : LSS i praktiken - ett individperspektiv
Målet med Lagen om stöd och service för vissa funktionshindrade, LSS, är att den enskilde får möjlighet att leva som andra. Genom speglingar av parallella plan; den officiella lag- och konventionstexten; forskning; gestaltade vardagssituationer och dagboksutdrag, undersöker författaren vad LSS innebär i praktiken.
Förutom LSS' honnörsord leva som andra; delaktighet; integritet; självbestämmande och kontinuitet, berörs även angelägna frågor som bemötande; hälsa; kommunikation; att vara anhörig (föräldra- och syskonperspektivet) och acceptans av en annorlunda livssituation.
"Så är det", som Simon ofta säger när han, lite förnöjt, konstaterar att saker och ting förhåller sig på ett visst sätt.
Boken vänder sig i första hand till dig som i ditt arbete möter barn eller vuxna med utvecklingsstörning och deras anhöriga. En annan viktig målgrupp är beslutsfattare; politiker och chefer.
Eva Borgström är socionom med lång erfarenhet av arbete inom funktionshinderrörelsen. Hon är också mamma till bokens huvudperson, Simon.
Tecken - Ett verktyg för ökad kommunikation
I en språkutvecklande förskolemiljö ligger fokus på barncentrerad kommunikation där det vardagliga samspelet är grunden. Olika sätt att kommunicera tillåts och uppmuntras. Barn ges möjlighet att använda alla sinnen – kroppsspråk, minspel, röstläge, intonation, beröring, blickkontakt och tecken.
Boken handlar om hur användandet av TAKK stärker kommunikationen i förskolan. TAKK innebär att låna tecken från det svenska teckenspråket och använda dessa tecken som ett alternativ och ett komplement i det kommunikativa samspelet. De viktigaste orden i meningen förstärks med tecken samtidigt som vi talar.
Författaren ger inspiration och konkreta förslag för att komma i gång att arbeta med TAKK i förskolegruppen.
The relationship between attachment styles and childhood trauma: a transgenerational perspective - a controlled study of patients with psychiatric disorders
IMS AND OBJECTIVES:
This study had two aims. The first aim was to compare attachment styles and traumatic childhood experiences of women with psychiatric disorders and their children to a control group. The second aim was to determine the relationship between attachment styles and traumatic childhood experiences both in mothers and their children.
BACKGROUND:
According to attachment theories, trauma in an early relationship initiates a developmental cascade in which insecure attachments may occur.
DESIGN:
A cross-sectional, descriptive study which, employed a case-control design, was performed between May 2013-March 2014.
METHODS:
This study was conducted in 63 women with psychiatric disorders and their children. The control group consisted of 63 women without any psychiatric disorders and their children. Data were collected using questionnaire forms, including the Adult Attachment Style Scale and the Childhood Trauma Questionnaire for both mothers and children. Descriptive statistics, a Pearson correlation and comparative statistics were used to analyse data.
RESULTS:
The childhood trauma scores of both the women with psychiatric disorders and their children were higher than the control group scores. Compared to the control group, the mothers with psychiatric disorders and their children were found to have less secure attachment styles. It was determined that the mothers and children with insecure attachment were more likely to have been abused.
CONCLUSION:
These results point to a relationship between trauma in childhood and attachment style. They also suggest that this relationship may undergo intergenerational transfer.
RELEVANCE TO CLINICAL PRACTICE:
This study contributes to the existing literature on the relationship between childhood traumas and attachment. Psychiatric nurses should focus not only on psychiatric disorders but also on the difficulties a patient faces regarding being a parent.
The transmission of trauma in refugee families: associations between intrafamily trauma communication style, children's attachment security and psychosocial adjustment
This study explores the transmission of trauma in 30 Middle Eastern refugee families in Denmark, where one or both parents were referred for treatment of PTSD symptoms and had non-traumatized children aged 4-9 years. The aim of the study was to explore potential risk and protective factors by examining the association between intra-family communication style regarding the parents' traumatic experiences from the past, children's psychosocial adjustment and attachment security. A negative impact of parental trauma on children might be indicated, as children's Total Difficulties Scores on the Strengths and Difficulties Questionnaire (SDQ) were significantly higher than the Danish norms. A negative association between children's attachment security as measured by the Attachment and Traumatization Story Task and higher scores on the SDQ Total Difficulties Scale approached significance, suggesting that the transmission of trauma may be associated with disruptions in children's attachment representations. Furthermore a significant association between parental trauma communication and children's attachment style was found.
The transmission of trauma in refugee families: associations between intrafamily trauma communication style, children's attachment security and psychosocial adjustment
This study explores the transmission of trauma in 30 Middle Eastern refugee families in Denmark, where one or both parents were referred for treatment of PTSD symptoms and had non-traumatized children aged 4-9 years. The aim of the study was to explore potential risk and protective factors by examining the association between intra-family communication style regarding the parents' traumatic experiences from the past, children's psychosocial adjustment and attachment security. A negative impact of parental trauma on children might be indicated, as children's Total Difficulties Scores on the Strengths and Difficulties Questionnaire (SDQ) were significantly higher than the Danish norms. A negative association between children's attachment security as measured by the Attachment and Traumatization Story Task and higher scores on the SDQ Total Difficulties Scale approached significance, suggesting that the transmission of trauma may be associated with disruptions in children's attachment representations. Furthermore a significant association between parental trauma communication and children's attachment style was found.
The transmission of trauma in refugee families: associations between intrafamily trauma communication style, children's attachment security and psychosocial adjustment
This study explores the transmission of trauma in 30 Middle Eastern refugee families in Denmark, where one or both parents were referred for treatment of PTSD symptoms and had non-traumatized children aged 4-9 years. The aim of the study was to explore potential risk and protective factors by examining the association between intra-family communication style regarding the parents' traumatic experiences from the past, children's psychosocial adjustment and attachment security. A negative impact of parental trauma on children might be indicated, as children's Total Difficulties Scores on the Strengths and Difficulties Questionnaire (SDQ) were significantly higher than the Danish norms. A negative association between children's attachment security as measured by the Attachment and Traumatization Story Task and higher scores on the SDQ Total Difficulties Scale approached significance, suggesting that the transmission of trauma may be associated with disruptions in children's attachment representations. Furthermore a significant association between parental trauma communication and children's attachment style was found.
Treatment Dropout and Missed Appointments Among Adults With Attention-Deficit/Hyperactivity Disorder
OBJECTIVE:
Knowledge of factors associated with treatment dropout and missed appointments in adults with attention-deficit/hyperactivity disorder (ADHD) is very limited. On the basis of proposed hypotheses that past behavior patterns are more predictive of current behaviors of treatment dropout and missed appointments than are sociodemographic and clinical characteristics, we examined the associations of sociodemographic variables, clinical variables, risk-taking behavior, educational and occupational instability, and behaviors during mandatory schooling with the primary outcome measures of treatment dropout and missed appointments.
METHOD:
In a naturalistic cohort study of 151 adult outpatients with ADHD initiating assessment in a Danish ADHD unit from September 1, 2010, to September 1, 2011, the Adult ADHD Self-Report Scale v1.1 symptom checklist (ASRS) and a thorough clinical interview were used to assess ADHD according to DSM-IV-TR criteria. Stepwise logistic regression analysis was used to estimate reported associations.
RESULTS:
A total of 27% of patients dropped out of treatment and a total of 42% had ≥ 3 missed appointments during treatment. Mood and anxiety disorders significantly lowered the odds of treatment dropout (odds ratio [OR] = 0.18; 95% confidence interval [CI], 0.05-0.65), whereas having started but not completed 2 or more educational programs apart from mandatory schooling significantly increased the odds of dropout (OR = 3.01; 95% CI, 1.32-6.89). Variables significantly associated with most missed appointments were low educational level (OR = 2.19; 95% CI, 1.12-4.31), 3 or more employments of less than 3 months' duration (OR = 2.86; 95% CI, 1.30-6.28), and having skipped class often/very often during mandatory schooling (OR = 2.65; 95% CI, 1.29-5.43). Additionally, the predominantly inattentive ADHD (ADHD-I) subtype lowered the odds of missed appointments (OR = 0.17; 95% CI, 0.05-0.62).
CONCLUSION:
Our results suggest that past behavior in terms of highest dropout rates in the educational and occupational systems and highest rates of skipping class during mandatory schooling is equally associated with current behavior of treatment dropout and missed appointments as are sociodemographic and clinical factors.
Tröst genom hälsostödjande familjesamtal – Upplevelser och effekter av en familjecentrerad intervention
Bakgrund: Att ha en sjuk närstående som bor på ett särskilt boende
för äldre påverkar hela familjen. Familjemedlemmarna kan uppleva
känslor av saknad, skuld, maktlöshet och sorg. Det finns därför ett
behov av att utvidga omvårdnaden till att innefatta hela familjen som
ett system för att minska ohälsa hos familjer. Detta kan ske genom
familjecentrerade interventioner. Ett exempel på en familjecentrerad
intervention är hälsostödjande familjesamtal (FamHC). Det är en
vårdhandling med focus på familjens styrkor, resurser och relationer
inom familjen. Det finns begränsad kunskap om dessa
familjeinterventioner i kontexten vård och omsorg av äldre.
Syftet: Syftet med avhandlingen är att ur ett familje- och
sjuksköterskeperspektiv studera upplevelser, responser och effekter
av sjuksköterskeledda hälsostödjande familjesamtal med närstående
som har en familjemedlem boende på ett särskilt boende för äldre.
Metoder: Denna avhandling är baserad på en intervention med
FamHC genomförd vid tre särskilda boenden för äldre i norra Sverige.
Samtalens struktur är tre på varandra följande samtal varannan vecka
med skilda fokus och avslutas med ett avslutande brev. Avhandlingen
består av fyra delstudier. I studie I-II användes semistrukturerade
gruppintervjuer med närstående som analyserades med kvalitativ
innehållsanalys. I studie III användes mixad metod. Kvalitativa
resultat från intervjuer och kvantitativa resultat från instrumenten
SWED-QUAL och FHI, analyserades parallellt samt integrerades
därefter. I Studie IV intervjuades tre sjuksköterskor med
semistrukturerade individuella intervjuer. Sjuksköterskorna skrev
även dagboksanteckningar. Intervjuerna och dagböckerna
analyserades med kvalitativ innehållsanalys.
Resultat: Resultaten från studie I visar att de närstående en månad
efter deltagandet i FamHC upplevde en lindring av sitt dåliga samvete
då de krav som familjerna ställer på sig själva minskat. Vid samtalen
fick de närstående bekräftelse på att de gjorde så gott de kunde.
Genom att dela sina föreställningar med varandra genom berättelser
skapades en ökad förståelse för hela familjens upplevelse av
situationen. Studie II visar att sex månader efter samtalsseriens
avslutande upplevde familjen deltagandet i FamHC som ett delande i
en dialog med en läkande kraft. Delandet upplevdes bekräftande
vilket gjorde att de närstående upplevde samtalen som trösterika.
Studie III visar att de närståendes emotionella välbefinnande hade
förbättrats sex månader efter att ha deltagit i FamHC. Studien visar
på förbättrad kommunikation och relationer samt förbättrat
samarbete inom familjen. Studie IV visar att sjuksköterskorna
upplevde att FamHC var en tillämpbar omvårdnadsåtgärd i arbetet
med familjer. Det gav en förbättrad förståelse av familjens situation
och förbättrade relationen med närstående.
Konklusion: Den övergripande slutsatsen från resultaten i
delstudierna är att genom att delta i FamHC blev familjerna tröstade.
Samtalen skapade en arena för de närstående att berätta samt att
lyssna till varandras berättelser. Det gavs utrymme att gråta och sörja
över sin situation över att ha en sjuk familjemedlem på ett särskilt
boende. Samtalen medförde reviderade föreställningar bland
närstående och sjuksköterskorna samt en ökad förståelse och ett
bättre samarbete inom familjen och en ökad känsla av välbefinnande
hos de närstående. Hälsostödjande familjesamtal kan därmed föreslås
vara ett användbart verktyg för sjuksköterskor i deras arbete med
närstående inom kontexten särskilda boenden för äldre personer.
v
Nyckelord:
Hälsostödjande familjesamtal, Familjecentrerad omvårdnad, FamHC,
Familjeomvårdnad, Omvårdnad, Särskilt boende för äldre.
Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD.
AIMS AND OBJECTIVES: To explore how spouses of patients with severe chronic
obstructive pulmonary disease experience their role as informal caregiver.
BACKGROUND: Informal caregiver spouses are of pivotal importance in the way that
patients with chronic obstructive pulmonary disease cope with their daily life,
including their opportunity to stay at home and avoid hospitalisations in the
last stages of the disease. However, caregiving is associated with increased
morbidity and mortality among caregivers. Further understanding of the role as an
informal caregiver spouse of patients with severe chronic obstructive pulmonary
disease is needed to develop supportive interventions aimed at reducing the
caregiver burden.
DESIGN: The study had a qualitative exploratory design. The data collection and
analysis were based on framework method. Framework method is a thematic
methodology and consists of five key stages: familiarisation, identifying a
thematic framework, indexing, charting and mapping & interpretation.
METHODS: Three focus groups were conducted in November 2013 with 22 spouses of
patients with severe chronic obstructive pulmonary disease.
RESULTS: Undefined and unpredictable responsibility was found to be the
overarching theme describing the informal caregiver role. Underlying themes were:
being constantly in a state of alertness, social life modified, maintaining
normality, ambivalence in the relationship and a willingness to be involved.
CONCLUSIONS: The informal caregiver spouses experienced ambiguity about
expectations from their private and the health professionals' surroundings. The
informal caregiver spouses wanted to provide meaningful care for their partners,
but sought knowledge and support from the health professionals.
RELEVANCE TO CLINICAL PRACTICE: We recommend that nurses take on the
responsibility for including the informal caregiver spouses in those aspects of
decision-making that involve the common life of the patients and their spouses.
Ways of understanding being a healthcare professional in the role of family member of a patient admitted to hospital. A phenomenographic study
Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.
OBJECTIVE:
To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.
DESIGN:
Qualitative with a phenomenographic approach.
SETTING:
Three Swedish hospitals.
PARTICIPANTS:
All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.
METHODS:
Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.
RESULTS:
Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.
CONCLUSIONS:
This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.
What do we know about older former carers? Key issues and themes
Abstract
Despite a significant growth in the number older former family carers, they remain largely invisible in carer-related research and literature. To begin to address this deficit, a four-stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes - the concept of 'older former carer', the legacies of caring, influences on the legacies of caring, conceptualising post-caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health-related legacies older former carers' experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub-groups, such as carers of relatives admitted to a care home, than others. Methodology-related weaknesses include small sample sizes and a focus on a single, often condition-specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post-caring tends to be viewed as one of the final temporal 'stages' of the carer's 'care-giving career', a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer - namely formerality - as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.
The role of parent training in treatment of preschoolers with ADDH
Abstract
The efficacy of group parent training was assessed in improving compliance and time on task in preschoolers with attention-deficit disorder with hyperactivity. Positive effects were obtained on measures of child compliance, but not on measures of attention. Parental compliance-management skills and overall style of interaction were also positively affected. The use of parent training for early intervention with ADDH children is discussed.
Attachment organization in 2 ½ to 4 ½ year olds: Coding manual
Attachment organization in preschool children: Procedures and coding manual
The age range of 18–36 months was selected as to best expand upon our previous research comparing virtual parental presence, physical presence, and complete parental absence (Tarasuik et al., 2011), as the results were strongest within this age range, and Attachment behaviors are known to occur with this age range (e.g., The MacArthur Preschool Strange Situation; Cassidy and Marvin, 1992).
Behavioral Assessment System for Children
The Behavior Assessment System for Children, Second Edition (BASC–2; Reynolds & Kamphaus, 2004) is a multimethod, multidimensional system used to evaluate the behavior and self-perceptions of children, adolescents, and young adults aged 2 through 25 years. The BASC–2 is multimethod in that it has the following components, which may be used individually or in any combination: (1) two rating scales, one for teachers (Teacher Rating Scales, or TRS) and one for parents (Parent Rating Scales, or PRS), which gather descriptions of the child's observable behavior, each divided into age-appropriate forms; (2) a self-report scale (Self-Report of Personality, or SRP), on which the child or young adult can describe his or her emotions and self-perceptions; (3) a Structured Developmental History (SDH) form; (4) a form for recording and classifying directly observed classroom behavior (Student Observation System, or SOS), which is also available for PDA applications as an electronic version known as the BASC–2 POP or Portable Observation Program; and (5) a self-report for parents of children ages 2–18 years, designed to capture a parent's perspective on the parent-child relationship in such domains as communication, disciplinary styles, attachment, involvement, and others.
Bereaved groups for inner-city children
Guided by theory, empirical research, and clinical experience, this demonstration tested a 12-session group intervention for 38 inner-city children who had lost a caregiver. The design of the group intervention was guided by the psychodynamic tradition of the sponsoring agency, themes from the bereavement literature, and findings from intervention research on bereaved children and adults. Attendance for the group intervention was high among those 29 children who completed posttests. The loss of the parent figure often had an impact on caregiving and living arrangements. Children rated themselves as significantly more depressed at pretest than their caregivers rated them, but at posttest this difference diminished. However, the majority of children remained depressed throughout the study. Pretest and posttest comparisons suggest that the treatment intervention may have enabled children to develop a more mature concept of death. Mixed outcomes and the methodological limitations of the study allow for multiple interpretations. Nevertheless, modest results reported here may encourage other clinical researchers to build on this early effort. Better understanding of how to treat bereaved children must await controlled, longitudinal research.
Children´s Depression Inventory
Childrens´depression inventory (CDI) Manual.
Initial Findings on Preventive Intervention for Families with Parental Affective Disorders
Abstract
OBJECTIVE:
The purpose of this study was to develop a clinician-based cognitive, psychoeducational, preventive intervention for families with parental affective disorder that would be suitable to widespread use, test its feasibility and safety, and define the areas affected by the intervention. The intervention was designed to increase understanding of parental illness and resilience in the children.
METHOD:
The authors studied the first seven families (14 parents) to receive the intervention. Enrollment criteria included affective disorder during the preceding year in at least one parent, presence of at least one child between the ages of 8 and 14 years who was not psychiatrically ill at the time of participation, and willingness to participate in the research study. The intervention consisted of parent, child, and family sessions. Assessment included semistructured interviews with parents about affective disorders, standard ratings of marital satisfaction and therapeutic alliance, and a recently developed semistructured interview to assess response to the intervention.
RESULTS:
Overall satisfaction with the intervention was rated moderate to high by parents. No harm was reported. Ten of 14 parent subjects reported five or more behavior and attitude changes that they attributed to the intervention. The most frequent behavior and attitudinal changes reported were increased discussion of the illness and related issues and increased understanding of information about affective illness.
CONCLUSIONS:
The authors conclude that the intervention is safe and feasible in families with parental affective disorder.
Modern childhood? Exploring the ‘child question’ in sociology
Om stöd och service till vissa funktionshindrade
Parent Observation of Child Activities Scale
Psychosoziale Probleme von Kindern körperlich kranker Eltern- ein literatur uberblick.
Racialized boundaries: race, nation, gender, colour and class and the anti-racist struggle
Attention-deficit/hyperactivity disorder: Are we medicating for social disadvantage?
The diagnosis of attention-deficit/hyperactivity disorder (ADHD) is based on well defined criteria, which describe a number of symptoms. It is important to consider the context of the symptoms, in terms of the influence of the child's family and school. Although stimulant medications benefit selected children they may not benefit all children with symptoms of ADHD. The incidence of ADHD increases with social disadvantage. There is a potential danger of using stimulant medication alone to treat children with complex psychosocial problems, associated with social disadvantage, including Aboriginal children. We desperately need better training in the management of ADHD and better access to child psychiatrists.
Barn som omsorgsgivere: Adaptiv versus destruktiv parentifisering
Being the next of kin of an adult person with muscular dystrophy
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.
Being the next of kin of an adult person with muscular dystrophy
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.
Benjamin-Min mamma är speciell
En bok för barn som handlar om att leva med en förälder som har MS. Boken Benjamin ger föräldrar och barn möjlighet att läsa och diskutera tillsammans. Den berättar om hur det är att leva med en mamma som har MS och tar upp de många oförutsägbara sidorna av sjukdomen. Boken förklarar på ett enkelt sätt vad som händer med mamman och stöttar Benjamin känslomässigt. Detta skapar insikt och trygghet för Benjamin och han blir stolt över hur hans mamma övervinner de svårigheter hon ställs inför.
Berättelser om ensamhetens vardag hos människor med psykiska funktionshinder.
Beyond stroke: Description and evaluation of an effective intervention to support family caregivers of stroke patients.
OBJECTIVE:
The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den Heuvel's previous effect study showed positive effects of the same intervention program, but unlike our present study differences between the two support variants could not be measured.
METHODS:
Of 257 family caregivers who were included and randomly assigned to an intervention variant or a control group, 127 family caregivers completed the intervention in either the group program or the home visiting program.
RESULTS:
Evaluation data showed that both intervention variants had been helpful and feasible, but home visit participants missed peer contact and follow-up contacts were missed in both intervention programs. In comparison to the home visiting program, the group program participants showed more benefit especially with respect to informational and emotional components. Caregivers' preference for type of intervention revealed that both types of intervention had its supporters. Those that preferred the group program could be clearly characterised: they were burdened, lived with a more psychologically handicapped relative, were using active coping strategies more frequently or lived in a region which is considered to be more sociable.
CONCLUSION:
The present study adds extensively to van den Heuvel's effect study with respect to discriminative aspects of group and home intervention programs and their respective benefits for specific family caregiver groups.
PRACTICE IMPLICATIONS:
In order to suitably match an intervention type with specific caregiver characteristics the intervention provider should utilize caregiver self-selection or undertake professional screening of caregiver burden. Telephone contacts should be offered in addition to the interventions.
Brukare och anhöriga om kvalitet i äldreomsorgen : Kvalitetsbarometern 1998, 1999, 2002, 2004 och 2005
By their own young hands: Delibirate self-harm and suicid ideas.
Self-harm in adolescents is an increasingly recognized problem, and there is growing awareness of the important role schools and health services can play in detecting and supporting those at risk. By Their Own Young Hand explores the findings of the first large-scale survey of deliberate self-harm and suicidal thinking in adolescents in the UK, and draws out the implications for prevention strategies and mental health promotion.
Six thousand young people were asked about their experiences of self-harm, the coping methods they use, and their attitudes to the help and support available. The authors identify the risk and protective factors for self-harm, exploring why some adolescents with suicidal thoughts go on to harm themselves while others do not, what motivates some young people to seek help, and whether distressed teenagers feel they receive the support they need. By Their Own Young Hand offers practical advice on how schools can detect young people at risk, cope with the aftermath of self-harm or attempted suicide, and develop training programmes for teachers. It also examines the roles of self-help, telephone helplines, email counselling, and walk-in crisis centres.
Packed with adolescents' own personal accounts and perspectives, this accessible overview will be essential reading for teachers, social workers and mental health professionals.
Care revolutions in the making? A comparison of cash-for-care programmes in four european countries
Caring and carers. Ch 12 i Focus on Health
Childhood bereavement: psychopathology in the 2 years postparental death
Abstract
OBJECTIVE:
Although the death of a parent is one of the most significant stressors a child can experience, the psychiatric sequelae of parental death are not fully understood.
METHOD:
A total of 360 parent-bereaved children (ages 6-17) and their surviving parents were directly interviewed four times during the first 2 years following the death (at 2, 6, 13, and 25 months). Data collection occurred from 1989 to 1996. Psychiatric symptomatology was compared among the bereaved children, 110 depressed children, and 128 community control children and their informant parents. Additional analyses examined simple bereavement without other stressors versus complex bereavement with other stressors and anticipated versus unanticipated death.
RESULTS:
Bereavement following parental death is associated with increased psychiatric problems in the first 2 years after death. Bereaved children are, however, less impaired than children diagnosed with clinical depression. Higher family socioeconomic status and lower surviving parents' level of depressive symptoms are associated with better outcomes. Complex bereavement was associated with a worse course, but anticipation of the death was not.
CONCLUSIONS:
Childhood bereavement from parental death is a significant stressor. Children who experience depression in combination with parental depression or in the context of other family stressors are at the most risk of depression and overall psychopathology.
COAT: The Carers Outcome Agreement Tool : A new approach to working with family carers.
Conflict and repair in addiction treatment: An attachment disorder perspective
Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.
Conflict and repair in addiction treatment: An attachment disorder perspective
Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.
Conflict and repair in addiction treatment: An attachment disorder perspective
Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.
Consistency of quality assessments in long-term care by the clients, family members and named
Dags att kasta ut Beställar-Utförarmodellen i äldreomsorgen!?
Danish home care policy and the family: Implications for the United Sates.
Death and suicide among former child and adolescent psychiatric patients
BACKGROUND: Increased mortality rates among previous child and adolescent psychiatry (CAP) patients have been found in Scandinavian studies up to the 1980s. The suicide risk in this group has been estimated to be almost five times higher than expected. This article addresses two questions: Do Swedish CAP patients continue to risk premature death and what kind of information related to psychiatric symptoms and/or behavior problems can predict later suicide? METHODS: Hospital files, Sweden's census databases (including immigration and emigration) and administrative databases (including the Swedish Hospital Discharge register and the Persons Convicted of Offences register), and the Cause of Death register were examined to determine the mortality rate in a group of 1,400 former CAP inpatients and outpatients over a period of 12-33 years. Observed and expected numbers of deceased were calculated with the prospective method and the standardized mortality ratio (SMR) method. The relative risk or the risk ratio (RR) is presented with 95% confidence intervals (CIs). Significance level tests were made using two-by-two tables and chi-square tests. The Cox proportional-hazards regression model was used for survival analysis. RESULTS: Twenty-four males and 14 females died. Compared with the general population, the standardized mortality ratio in this group of CAP patients was significantly higher in both sexes. Behavioral problems, school problems, and co-morbid alcohol or drug abuse and criminality (including alcohol-related crimes) were found to be important predictors. Thirty-two deaths were attributed to suicide, intoxication, drug overdose, or accident; one patient died of an alcohol abuse-related disorder, and five patients died of natural causes. Suicide was the most common cause of death, but only 2 of these 19 cases were initially admitted for attempted suicide. CONCLUSION: We suggest that suicide and death prevention among CAP patients may not be a psychiatric issue per se but a future function of society's juvenile social-welfare investments and juvenile-delinquency prevention programs.
Det andra barnet. Föräldrars tankar kring sitt andra barn då deras första har ett funktionshinder
Bakgrund till studien är ett behov och ett intresse att belysa den situation och de dilemman
som föräldrar har att förhålla sig till då deras första barn har ett funktionshinder och de vill
ha fler barn. Mitt intresse väcktes i samband med att jag träffade nyblivna
förstagångsföräldrar till barn med funktionshinder i mitt arbete på en samtalsmottagning
för anhöriga. Syftet med undersökningen är att få vidgad kunskap om föräldrarnas tankar
och erfarenheter i samband med deras andra graviditet.
Studien bygger på intervjuer med föräldrar utifrån frågor om hur de tänkte kring beslutet
om ett barn till, om graviditeten, om möjligheterna till fosterdiagnostik, hur de upplevde
förlossningen och om hur det var att bli föräldrar igen.
Ur intervjumaterialet framstod ett flertal dilemman som föräldrarna hade att ta ställning
till. Dessa berörde existentiella och etiska frågor bl.a. kring människovärde och
funktionshinder och svåra beslut kring fosterdiagnostik och abort i början av processen.
Genom föräldrarnas berättelser går ett stråk av sorg och graviditeterna präglades av oro.
Oron tog sig olika utryck men för flera fanns den kvar länge trots att barnet bedömts som
friskt. Oron relaterade i hög grad till hur det första barnets funktionshinder uppkommit
och gestaltade sig.
Att få ett friskt barn var för alla intervjuade en stor glädje och en revolutionerande
erfarenhet. Den innebar först och främst vetskapen om att det kunde gå bra. Den innebar
också att deras identitet som föräldrar kunde stärkas och relationerna till omvärlden
normaliseras.
Ett kvarstående dilemma för föräldrarna idag är deras kamp att få det stöd de behöver för
att hinna och orka med sina barn och ändå leva så normalt som möjligt. Ett annat dilemma
som alla de intervjuade delar är hur de ska kunna ge det andra barnet möjlighet att
utvecklas fritt och normalt, samtidigt som de hoppas att det ska komma att känna ansvar
för sitt syskon.
Developing a model of participatory research involving researchers, practitioners, older people and their family carers.
Does individual treatment for alcoholic fathers benefit their children? A longitudinal assessment
Psychosocial adjustment in children of alcoholics (COAs; N=125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems.
Du ska vårda din mamma : Tema familj.
Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia
Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods
This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.
Elderly Immigrants in Sweden: 'Otherness' under Construction
Engagerade medborgare blir allt fler : Allt fler hjälper en nära anhörig eller en granne : Det informella obetalda hjälparbetet har ökat de senaste fjorton åren visar olika studier : Tema : Att vara anhörig
Ett reflexivt syskonskap. En studie om att växa upp tillsammans med fostersyskon
Avhandling för doktorsexamen
The aim of this thesis is to describe and analyse how the natural children of foster carers experience growing up in a foster family. The intention was to gain knowledge about their everyday life through their own participation, and to make the research questions derive from their experiences. The Swedish research project "Growing Up With Foster Siblings" built on empirical material collected via focus groups (17 participants), discussion groups (16 partici- pants), a (web and postal) questionnaire (684 answers) and 8 qualitative interviews. The study follows the sociology of childhood and the young people are considered as social actors participating in interactions, activities and negotiations, which contribute to the construction of their social world. Children's competences as well as their constraints are explored. When a family becomes a foster family the whole family is affected, not in the least the natural children, who often take an active part in the fostering assignment. The young people's experiences vary to a great extent. Some describe their relationships with their foster siblings as an ordinary sibling relationship or as being friends. Some take responsibility and care for both their foster siblings wellbeing as well as for their parent's wellbeing. Several of them describe how they reflexively mould their own part in the interaction by focusing on the needs of other family members. A third of the young people in the study experiences a loss of time and attention from their parents. This theme has brought the analysis to the question of how the young people experience their position in the family. In the young people's descriptions it is noticeable how important the feeling of being able to affect their own situation, of being an actor, is. The young persons who have negative experiences (in groups and individual interviews mostly girls/women) have often described themselves as powerless, with no possibility of negotiating and affecting their situation. Many of the young people describe themselves as active and involved in processes through which relationships in the family are formed. There is no consensus as to their construction of how a child in a certain age should engage in caring activities. The young people are involved and implicated in processes that are complex and full of ambiguity. In line with theories of late modern society where sources of authority are localised within the individual and to negotiating processes, the children seem to be of the opinion that they are active agents who themselves decide what to take responsibility for or not. But they do this in a context. They live within a context where they are expected to behave according to certain conceptions of in what way a natural child to a parent who foster should act in relation to their foster siblings but also towards their parents. Expectations interlock with the active child who engages in processes through which social relationships are formed in the family.
Evaluation of a focused short-term preventive counseling project for families with a parent with cancer
Twenty-four families participated in counselling for families with a parent with cancer (24 mothers, 17 fathers, and 34 children). Parents who received counselling were significantly more depressed before the counselling than a nonrandomized control group who did not receive counselling, but participated in another part of the project. For the parents, there was a significant decrease in depression and increase in family functioning scores from before to after the intervention. For the children, a significant pre- to post-decrease in depression scores was found. Changes in depression and family functioning were significantly correlated with the degree of counselling contentment. Reasons for seeking counselling were insecurity in relation to the children, problems with communication, high level of conflict, and change of roles. A number of themes appeared when parents and children described what they gained from the counselling: Confirmation in being a 'good-enough' parent, more understanding of emotions and reactions of other family members, more sense of intimacy and cohesion within the family, and normalization of own feelings.
Exploring visual-graphic symbol acquisition by pre-school age children with developmental and language delays
The process of language acquisition requires an individual to organize the world through a system of symbols and referents. For children with severe intellectual disabilities and language delays, the ability to link a symbol to its referent may be a difficult task. In addition to the intervention strategy, issues such as the visual complexity and iconicity of a symbol arise when deciding what to select as a medium to teach language. This study explored the ability of four pre-school age children with developmental and language delays to acquire the meanings of Blissymbols and lexigrams using an observational experiential language intervention. In production, all four of the participants demonstrated symbol-referent relationships, while in comprehension, three of the four participants demonstrated at least emerging symbol-referent relationships. Although the number of symbols learned across participants varied, there were no differences between the learning of arbitrary and comparatively iconic symbols. The participants' comprehension skills appeared to influence their performance.
Familjeorienteret alkoholbehandling – et litteraturstudium af familjebehandlingens effekter
Family bereavement project documentation
Family caregivers of persons with dementia : experiences of burden, satisfaction and psychosocial intervention
One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.
Family caregivers of persons with dementia : Experiences of burden, satisfaction and psychosocial intervention
One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.
Family Treatment Approaches for Depression in Adolescent Males
Adolescent depression is a serious and common disorder. Though adolescent males are less likely to report depression than females, they have serious risks associated with the disorder, like suicide, future substance abuse, and illegal activity. Several gender differences have been observed among depressed adolescents and should be considered in assessment and treatment. Little efficacy research exists for family treatments of depression in adolescent males, though several approaches have been proposed. These approaches include Structural Family Therapy, Interpersonal Family Therapy, and Attachment-Based Family Therapy. These treatments have been found useful in clinical settings, but much more efficacy research is necessary. Adapted from the source document.
Frightened, threatening, and dissociative parental behavior in low-risk samples: Description, discussion, and interpretations
In 1990 we advanced the hypothesis that frightened and frightening (FR) parental behavior would prove to be linked to both unresolved (U) adult attachment status as identified in the Adult Attachment Interview and to infant disorganized/disoriented (D) attachment as assessed in the Ainsworth Strange Situation. Here, we present a coding system for identifying and scoring the intensity of the three primary forms of FR behavior (frightened, threatening, and dissociative) as well as three subsidiary forms. We review why each primary form may induce fear of the parent (the infant's primary "haven of safety"), placing the infant in a disorganizing approach-flight paradox. We suggest that, being linked to the parent's own unintegrated traumatic experiences (often loss or maltreatment), FR behaviors themselves are often guided by parental fright, and parallel the three "classic" mammalian responses to fright: flight, attack, and freezing behavior. Recent studies of U to FR, as well as FR to D relations are presented, including findings regarding AMBIANCE/FR+. Links between dissociation, FR, U, and D are explored. Parallel processing and working memory are discussed as they relate to these phenomena.
Funktionshinder och strategival. Om att hantera sig själv och sin omvärld
Hur upplever och hanterar vuxna personer med stora rörelsehinder sin situation och sig själva? Hur hanterar funktionshindrade sina kontakter med vårdbyråkratin och med allmänheten? Hur påverkas självbild och livssyn av att leva med stora rörelsehinder? Det bärande temat i Funktionshinder och strategival är en kritik av den medikalisering som beskriver och formar funktionshindrade människors tillvaro; sjukförklaringen, omyndigförklaringen samt dikotomin i starka och svaga. Boken vänder sig emot ett utbrett grundantagande om funktionshindrade människors tragedi och speglar både ett inifrån- och ett utifrånperspektiv så att både de läsare som lever med funktionshinder och de som möter funktionshindrade kan känna igen sig.
Boken vänder sig till universitets- och högskolestuderande inom beteendevetenskap, vård, medicin och sociala områden samt yrkesverksamma som kommer i kontakt med människor med omfattande funktionshinder. Den kan med stor behållning också läsas av personer med funktionshinder och deras anhöriga.
Förstärkt stöd till anhöriga som hjälper och vårdar närstående. Meddelandeblad, (2006-1-2)
Föräldralärande - vad är det? : om föräldrautbildning och föräldraprogram för familjer som har barn med diagnoser inom autismspektrumet
Föräldralärande – Vad är det? Om föräldrautbildning och föräldraprogram för familjer som har barn med diagnoser inom autismspektrumet
Global quality of life in primary caregivers of patients with cancer in palliative phase staying at home.
Grandmother between work and great grandmother?
Har svenska pensionärer något val när det gäller anhörigvård?
Harmonisk bild av Sverige ifrågasätts : Tillit är kittet för ett välfungerande samhälle ; internationellt sett är Sverige känt för en hög grad av tillit, en bild som nu utmanas av forskare vid Ersta Sköndal Högskola
Informell omsorg, socialt kapital och tillit. In Det civila samhället som forskningsfält : Nya avhandlingar i ett nytt sekel (Vol. 63-74).
Informella hjälpgivare
Interaction between the teacher and the congenitally deafblind child
EMPIRICAL DATA on the development of interaction, communication, and language in deafblind children is very rare. To fill this gap, a case study was conducted in which the interaction between a teacher and a deafblind boy age 3 years 4 months was analyzed. Sequential analysis of their interaction confirmed some general clinical impressions about interaction with deafblind children, and provided the basis for suggestions on how the interaction pattern might be changed.
Intervention för närstående till personer med demenssjukdom
Investera i närstående
Investera i närstående
Investera i närstående
Jag vill ni hämtar min mamma … Villkor för familjearbete för ungdomar inom institutionsvården
Avhandling vid pedagogiska institutionen
Jag vill säga något
Filmen vänder sig till den som vill inspireras till att använda TAKK, tecken som alternativ och kompletterande kommunikation. Vi får följa fyra barn i deras vardag. De är i olika åldrar och i olika behov av att kunna kommunicera. Gemensamt är att de och deras omgivning använder TAKK varje dag, i alla sammanhang.
Julie-Om att växa upp med en förälder som inte räcker till.
En bok som har romanens form men som bygger på verkliga händelser och ger en inblick i hur barn kan ha det idag. Julie växer upp med en psykiskt sjuk mamma.Boken bygger på autentiska händelser som några personer valt att berätta om och beskriver på ett bra sätt hur det kan vara att växa upp med en förälder som är psykiskt sjuk.
Key worker services for disabled children: the views of staff
Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N = 50), managers (N = 7) and members of multi-agency steering groups (N = 32) from seven key worker services in England and Wales. A response rate of 62% was obtained. Major themes emerging from the interviews were identified, a coding framework was agreed upon, and data were coded using the qualitative data analysis programme Max QDA. Results showed that although the basic aims of the services were the same, they varied widely in the key workers' understanding of their role, the amount of training and support available to key workers, management and multi-agency involvement. These factors were important in staff's views of the services and inform recommendations for models of service.
Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?
Background Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.
Methods A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).
Results The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.
Conclusions Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.
Komet för föräldrar. En randomiserad effektutvärdering av ett föräldraprogram för barns beteende problem.
En av de viktigaste riskfaktorerna för våldsbrottslighet är tidiga beteendeproblem. Barn som är okoncentrerade och bråkiga riskerar i högre utsträckning att misslyckas inlärningsmässigt och få kamratproblem. Det ökar i sin tur risken för mer allvarliga former av antisociala aktiviteter som alkohol- och drogmissbruk, kriminalitet samt psykisk ohälsa. Det finns alltså påtagliga fördelar med att så tidigt som möjligt försöka hjälpa barn som ofta bråkar och bryter mot normer. Föräldraträning är den bästa metoden för att minska dessa problem hos barn. Ingen annan metod har bättre forskningsstöd. I denna rapport undersöks om det i Sverige utvecklade föräldraträningsprogrammet Komet kan hjälpa föräldrar att bättre hantera beteendeproblem hos det egna barnet. Utvärderingen omfattar Komet i ordinarie verksamhet och har genomförts i form av en randomiserad kontrollerad studie med 159 föräldrar till barn i åldrarna tre till tio år som av föräldrarna bedömdes vara bråkiga och trotsiga. Familjerna lottades till ett av tre alternativ: den ordinarie versionen av Komet, en kortversion av Komet samt en grupp som fick vänta en termin på behandling (väntelista). Data samlades in före interventionernas start samt efter fyra respektive tio månader. Den sista mätningen omfattade endast familjer som fått någon av Komet-versionerna. De familjer som ej deltagit i datainsamlingen vid fyra respektive tio månader (13%) har inte tillåtits snedvrida randomiseringen. I stället har deras sista mätvärde flyttats fram och använts för bortfallet. Detta sätt att hantera bortfall är det rekommenderade. Resultaten visar att Komet ökat föräldrarnas föräldrakompetenser vid fyramånadersmätningen samt minskat barnens beteendeproblem och ökat deras sociala kompetenser. Jämfört med gruppen som befunnit sig på väntelista hade den ordinarie versionen av Komet starka effekter på föräldrakompetenser (ES =.89) och beteendeproblem (ES =.68) och medelstarka på sociala kompetenser (ES =.41). För kortversionen av Komet var motsvarande effekter svaga till medelstarka (ES =.39,.35 resp.14). Effekterna av Komet förefaller stabila eller ökande efter i genomsnitt tio månader. Efter kompensation för väntelistans resultat efter fyra månader (motsvarande resultat efter tio månader saknas) har det ordinarie Komet mycket starka effekter för föräldrakompetenser (ES = 1.05) och barns beteendeproblem (ES =.92) samt starka för sociala kompetenser (ES =.69). För kortversionen av Komet var effekterna något lägre (.61,.55 resp.38). De positiva effekterna av den ordinarie versionen av Komet är enligt två meta-analyser i nivå med eller överträffar de genomsnittliga effekterna i andra föräldraträningsprogram. Barnens minskade beteendeproblem kunde kopplas till de förändrade föräldrabeteendena; ju bättre föräldrakompetens föräldrarna visade desto färre beteendeproblem hos barnen. Sökord. Föräldraträning, bråkiga barn,
Kompisboken om sorg
För de allra flesta händer det inte. Men varje år mister fler än 3 000 barn och ungdomar en förälder eller ett syskon. Då är det viktigt att ha bra kompisar. Men hur ska en bra kompis vara när något så svårt händer? Finns det saker man helst inte ska göra eller säga? Törs man fråga om dödsfallet? Kan man vara precis som vanligt och skratta och skoja? I den här boken får du träffa några barn och ungdomar som förlorat en nära anhörig. Hur var deras kompisar då? Vad var bra och vad var kanske inte lika bra? Du får också träffa några kompisar.
Korttidsboende för äldre : Hur används korttidsplatserna i Gävleborgs län? : En sammanfattning av tillsyn vid 12 korttidsboenden för äldre i Gävleborgs län hösten 2005 (Rapport 2006:25).
Hemhjälpsutvecklingen: samma problem, skilda lösningar?
Hjemmehjelp, brukere, kvalitet: en litteraturgjennomgang
I sinnenas värld. Hörsel
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.
I sinnenas värld. Känsel
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.
I sinnenas värld. Syn
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.
Imagining Robert
Israeli preschoolers under Scuds: a 30-month follow-up
OBJECTIVE:
Longitudinal studies of children exposed to traumatic events show contrasting findings regarding their symptomatic change over time. The present study reports on a 30-month follow-up of preschool children and their mothers who had been exposed to Scud missile attacks.
METHOD:
Families displaced during the Gulf War after their homes had been damaged by the missile attack and a control group whose homes remained intact were interviewed about posttraumatic and general symptomatology, the mothers' capacity to control images, and the children's adaptive behavior.
RESULTS:
Stress symptoms decreased in the displaced children but not in their mothers. Both reported more posttraumatic symptoms than did the control group. No differences in the children's adaptive behavior were observed. Posttraumatic symptoms of the displaced children correlated with the mothers' avoidant symptoms. The mothers' avoidant symptoms at follow-up were statistically explained by the mothers' symptoms during the war and their capacity for image control, the duration of displacement, and the cohesion of the family.
CONCLUSIONS:
The maternal stress-buffering capacity constitutes a central element in children's protective matrix and is crucial in minimizing long-term internal suffering of traumatized preschool children.
Jag vet jeg er annerledes – men ikke bestandig. En antropologisk studie av hverdagslivet til fem personer med psykisk utviklingshemming
Akademisk avhandling
Lever som andra? Om kommunaliseringen och levnadsförhållanden för personer med utvecklingsstörning
Manual for the young adult self-report and young adult behavioral checklist
The YABCL has 107 items that describe specific behavioral and emotional problems. Parents and others rate the young adult for how true each item is now or was within the past six months using the following scale: 0 = not true (as far as you know); 1 = somewhat or sometimes true; 2 = very true or often true. In addition, 13 socially desirable items are rated, and space is also provided for responses to two open-ended items covering physical and other problems, plus anything else the respondent wants to report about the young adult. These questionnaires are designed to provide standardized descriptions of behavior, feelings, thoughts, and competencies rather than diagnoses per se. The YABCL has 109 problem items and 11 competence items that are scored on 3-step scales. Eight syndromes are derived from the items on the YABCL, including 2 designated as Internalizing (Anxious/Depressed, Withdrawn) and 3 designated as Externalizing (Aggressive, Delinquent, and Intrusive Behavior). Reliability on the YABCL averages 0.85 across syndromes and Internalizing, Externalizing, and Total Problems scales (P .001). Validity has been demonstrated by showing significantly higher scores for subjects referred for mental health services than for matched nonreferred subjects.36-38 For the 8 syndrome scales, the 95th percentile is considered the borderline clinical cutoff and the 98th percentile the clinical cutoff on the basis of a nonreferred population. For the problem scales (Internalizing, Externalizing, and Total Problems), the 83rd percentile is considered the borderline clinical cutoff and the 90th percentile the clinical cutoff.33.
Nationell handlingsplan för äldrepolitiken. Regeringens proposition 1997/98:113
Obstacles to Equality: The Double Discrimination of Women with Disabilities
Omsorg – till glede eller bekymring. Rapport fra en studie om innvandrerkvinners omsorgsansvar for eldre slektinger
On loving and hating my mentally retarded mother
This article explores why I love and hate my mother. It is a
retrospective and ongoing participant observation of the phenomenon
of being the daughter of a mother with mental retardation. In it,
I make use of a layered account, an experimental, postmodern,
ethnographic reporting format which enables the researcher to use
as many resources as possible including social theory, lived
experience, and emotions. By using my own experience, I explore,
through first person narrative, the complex issues and emotions
involved. My conclusion is that the situation is fraught with
ambivalence because my present interactions with my mother are cast
in the light of a past where my mother simultaneously neglected and
protected me.
Parent management training: Evidence, outcomes, and issues
OBJECTIVE:
To describe and evaluate parent management training (PMT) as a treatment technique for oppositional, aggressive, and antisocial behavior.
METHOD:
Recent research is reviewed on the efficacy of PMT; factors that contribute to treatment outcome; the range of outcomes related to child, parents, and family; and variations of treatment currently in use. Limitations are also discussed related to the impact of treatment, clinical application, and dissemination of treatment.
RESULTS AND CONCLUSIONS:
PMT is one of the more well-investigated treatment techniques for children and adolescents. Notwithstanding the large number of controlled studies attesting to its efficacy, fundamental questions remain about the magnitude, scope, and durability of impact
Parent versus child stress in diverse family types: An ecological approach
Differences in level of overall stress and the proportion o f child- versus
parent-related stress among several different family types were investigated.
An ecological framework was used to delineate the predictors o f
stress for the different family types. Participants were 2 9 single-parent
families, 3 5 two-parent families, 1 7 families o f children with Down syndrome,
1 6 families of children with hearing impairment, and 2 9 families
of children with developmental delay. Th e results indicate that family
stress and ecological variables predictive o f family stress varied among
these families. Intervention and therapy efforts may be improved by
understanding the locus o f stressors among these family types.
Parents with learning disabilities: does everyone have the right to have children?
This paper presents an overview of the empirical background to issues surrounding parents with learning disabilities. The paper considers historical perspectives, hereditary, fertility and family size, parental compliance, child abuse and neglect, and child outcomes. This is followed by a brief discussion and report on a parental skills model, parent training and some of the more recent qualitative research in this area. The paper concludes that parents with learning disabilities do have the right to have children. The important issue is whether everyone has the right to keep these children.
Personlig assistent: en rättighet, ett yrke.
Boken består av tre delar där del I beskriver Historik - Lagar kring personlig assistans. Del II tar upp den personliga assistentens arbetssituation och beskriver hur det kan vara att arbeta som personlig assistent. Sista delen speglar brukarens situation, beskriver hur det kan upplevas att ta emot personlig assistans, arbetsgivaransvar samt hjälpmedelsberoende och hjälpmedelsansvar.
Boken kan användas i utbildning av personliga assistenter som ett diskussionsunderlag i utbildningssituationer för assistenter eller handläggare av assistans. Olika teman kan tas upp på personalmöten med brukare och assistenter, för att öka förståelsen för ett ömsesidigt arbete. Anhöriga till brukare eller brukaren själv kan få tips att tänka på inför uppläggning av assistans. En ökad förståelse för familjer och handikappade personers livssituation är också en avsikt med boken.
Denna bok kan överhuvudtaget användas som ett stöd för dem som på något sätt i sitt privatliv, arbete, studier eller yrkesutövande kommer i kontakt med personer som är berättigade till, eller arbetar som personlig assistent.
Positive and negative symptom behaviors and caregiver burden in the relatives of persons with schizophrenia
Objective: The relationships of perceived severity and responsibility attribution for positive and negative symptom behaviors to caregiver burden were investigated. Two types of burden were studied: objective burden (i.e., negative consequences such as physical problems, financial difficulties, and household tension), and subjective burden (i.e., emotional distress about disturbing behaviors). Method: Self-report measures were completed by 70 primary caregivers of persons with schizophrenia. Results: Subjective burden was related to both the severity of positive and negative symptom behaviors, whereas objective burden was related only to the severity of negative symptom behaviors. Responsibility attribution for negative symptom behaviors was related only to objective burden. Caregivers who perceived patients as being less responsible for their negative symptom behaviors reported higher levels of objective burden. The relationship between responsibility attribution for negative symptom behaviors and objective burden remained significant, even after controlling for the severity of negative symptom behaviors. Caregivers' perceptions of patients' responsibility for positive symptom behaviors were not related to objective burden. Conclusions: As expected, perceived severity of negative symptom behaviors was related to objective caregiver burden, whereas severity of positive symptom behaviors was not. These findings suggest that negative symptoms may have a greater impact on role functioning that positive symptoms, leading to greater burden. However, contrary to expectations, less responsibility attribution for negative symptom behaviors was related to higher levels of objective caregiver burden. Caregivers who perceive patients as incapable of altering their negative symptom behaviors and meeting certain role obligations may assume extra responsibilities, leading to higher levels of objective burden. The results indicate that there may be disadvantages for caregivers associated with assuming that patients have no control over their negative symptom behaviors.
Lek för alla sinnen – Tips från DUMLE
Life situation as next of kin to persons in need of care - chronic sorrow, burden and quality of life
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.
Reducing Parental Risk Factors for Children's Substance Misuse: Preliminary Outcomes with Opiate-Addicted Parents.
Parents in methadone treatment were offered an experimental intervention, Focus on Families, designed to reduce their risk of relapse and their children's risk of substance use. Experimentally assigned volunteers participated in systematic group training in relapse prevention and parenting skills, and received home-based case management services. Immediate posttreatment outcome results reported here include analyses of covariance controlling for baseline measures. Analyses show experimental parents held more family meetings to discuss family fun, displayed stronger refusal/relapse coping skills, demonstrated stronger sense of self-efficacy in role-play situations, and had lower levels of opiate use than control subjects. No significant differences in family bonding, family conflict, or other measures of drug use were found. The utility of intervening with drug-addicted parents in methadone treatment is discussed in light of these findings.
Lyssna på barnen
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.
Lönsamt arbete – familjeansvarets fördelning och konsekvenser
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.
-------------------------------------------------
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.
Mortality after parental death in childhood: a nationwide cohort study from three nordic countries
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.
Möjligheter med tecken för ungdomar och vuxna
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.
Older immigrants' use of public home care and residential care
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
Parental death during childhood and school performance – a national cohort study
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.
Parents of children with physical disabilities - perceived health in parents related to the child's sleep problems and need for attention at night
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.
Participation and social participation: are they distinct concepts?
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.
Paternal influences on treatment outcome of behavioral parent training in children with attention-deficit/hyperactivity disorder
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.
Samhällets stöd till människor med funktionshinder.
Statistical power analysis for behavioral sciences
Barns upplevelser när föräldrars missbruk upphört “Alltså det är svårt att må bra igen”
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.
Du får väl säga som det är
Du får väl säga som det är handlar om att vara anhörig och leva nära. Om vårt behov av varandra, om sårbarhet och kraft, om mod och rädsla och om hopp och stora livsfrågor. Det är också en bok om stolthet, tillit, livsglädje och drömmar och om de mirakel som finns i vardagen nära dem vi älskar, om de små miraklen och de stora. Vad vi kan få om vi förmår ta emot.
Föräldrars berättelser. Syskons uppväxt och frågor. Mor- och farföräldras oro och stolthet. Mostrar, fastrar, morbröder och andra närstående. De skriver om kärleken och sorgen, om vardagen, den sällsynta diagnosen och funktionsnedsättningen, om sina tankar och om det som är allra viktigast i livet - relationer, människovärde och mening.
Alla ger de oss något av det finaste de har - sin berättelse. Det är enkelt, det är vardagligt , det är storslaget. Det är en bok om vad det är att vara människa.
Skribenter: Siri Ambjörnsson, Nathalie Besèr, Zenzi Brydolf, Kristina Colliander, Axel Danielson, Frank Ekelund, Miriam Ennefors, Per Feltzin, Pernilla Glaser, Ingrid Hellegren, Imke Janoschek, Håkan Johansson, Jesper Larsson, Kristina Lindh, Gunilla Malm, Anna och Mikael Nordmark, Helene Näslund, Erika Ohlsson, Alexander Persson, Giuseppe Pozzi och Åsa Llinares Norlin, Gunnar Skarland, Arziv Suhak, Kristina och Thomas Taylor, Fredrik Westin
Adde Adhd : bästis med fienden
Hallå! Det är jag som är Adde. Jag är inlåst här i skåpet. Egentligen skulle jag ha spelat mitt livs viktigaste tennismatch nu. Kan du snälla släppa ut mig? Okej, jag ska vara ärlig. Jag har bara en vän och det är tennisbollen, alla andra verkar bli mina fiender. Men med hjälp av Adhd-killen inom mig kan jag bli din bästa vän. Absolut. När du öppnar får du se ...
Detta är en stormande feelgood-roman för unga. Med humor och allvar söker Adde sin nya identitet med en diagnos. En hink tennisbollar kastas upp, och ned ramlar ett bollhav av äventyr, med poliser, kraschad vänskap och en mystisk vaktmästare i kjol. Genom sporten får Adde vara med om ett spel där det viktigaste av allt är att vinna ? sig själv!
Alkoholrapporten 2017 Tema: Alkohol, föräldrar och barn
Barn som anhöriga till flykting- föräldrar med post-traumatisk stress – en systematisk litteraturstudie Rapport 6 från projektet ”Barn som anhöriga” från CHESS, Stockholms universitet/Karolinska Institutet
Detta är den sjätte rapporten i projektet "Barn som anhöriga", som genomförs av CHESS vid Stockholms universitet/Karolinska Institutet i samarbete med Nationellt kompetenscentrum anhöriga (Nka) på uppdrag av Socialstyrelsen. Inledningsvis ger rapporten en teoretisk översikt om barn som anhöriga till föräldrar med posttraumatisk stress. Därefter görs en systematisk granskning av den empiriska litteraturen om betydelsen av post-traumatisk stress hos flyktingföräldrar i exil för deras barns hälsa och välbefinnande.
Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries
OBJECTIVES: To explore associations between carer burden and characteristics of
(1) the informal carer, (2) the person with dementia, and (3) the care support
network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. MEASUREMENTS: Variables regarding the informal carer included familial
relationship and living situation. Variables relating to the person with dementia
included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q),
depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity
Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The
care support network was measured using hours of caregiving (ADLs, instrumental
ADLs [IADLs], supervision), additional informal care support, and service receipt
(home care, day care). Experience of carer burden was recorded using the Zarit
Burden Interview. Logistic regression analysis was used to determine factors
associated with high carer burden. RESULTS: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with
characteristics of the informal carer (family relationship, specifically wives or
daughters), of the person with dementia (physical dependency in ADLs;
neuropsychiatric symptoms, in particular nighttime behaviors and irritability),
the care support network (hours of caregiving supervision; receipt of other
informal care support) and country of residence. CONCLUSION: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of
distressed behaviors and difficulties in ADLs by the person with dementia may be
addressed by specific nonpharmacological interventions focusing on both elements.
The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.
Remaining connected despite separation - 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
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.
För alltid i mitt hjärta
Kristina och Vivianne, två motpoler vars liv löper parallellt i Solgläntans korridorer när de hälsar på sina mödrar. Sida vid sida i demensens skugga söker de sig till varandra, i behov av ett outtalat stöd. Vivianne gömmer sin osynliga sorg bakom lager av glada färger och en väldigt lång halsduk. Fast besluten att alltid se det positiva i livet väljer hon att hålla fast i nuet och leva för stunden, tacksam för alla minnen hon får. Kristina försöker förtränga sitt förflutna, men hon är rädd för att glömma. Rädd att pärlhalsbandet av minnen ska gå sönder. Rädd att bli som sin mamma, som hon i hemlighet önskar livet ur. Men döden kommer aldrig i tid. Den kommer alltid för sent. Eller för tidigt. För alltid i mitt hjärta är en roman om en oväntad vänskap, som kommer att betyda så mycket mer än Kristina och Vivianne någonsin hade kunnat ana. En vänskap som kommer att sträcka sig genom både tid och rum.
Se tecken och ge rätt stöd- vägledning för att uppmärksamma äldre med psykisk ohälsa inom socialtjänst och kommunal hälso- och sjukvård
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.
Information and Communication Technology - mediated support for working carers of older people
Avhandling
Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called 'working carers', there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support.
This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT.
An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff's experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers' experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV).
Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened.
In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers' needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier.
Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers' deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.
Utärdering av metoder i hälso- och sjukvården: En handbok. 2 uppl.
Vad är normalt? Föräldraansvaret i assistansersättningar
I bedömningen av barns rätt till assistansersättning ska Försäkringskassan
räkna bort det hjälpbehov som en vårdnadshavare normalt ska
tillgodose, det så kallade föräldraansvaret. Syftet med granskningen
är att undersöka hur Försäkringskassan tar hänsyn till föräldraansvaret
när den bedömer rätten till assistansersättning för personlig assistans.
Principen om normalt föräldraansvar finns i förarbetena till assistansreformen
år 1994, och fördes in i 51 kap. 6 § socialförsäkringsbalken
år 2011. Det framgår dock varken av bestämmelsen eller av
förarbetena till den hur föräldraansvaret ska avgränsas och bedömas.
Försäkringskassan beskriver inte i vägledningen när eller hur handläggare
ska göra avdrag för normalt föräldraansvar. Vid intervjuer
med handläggare vid lokala försäkringscenter (LFC) har det också
kommit fram att styrningen från huvudkontoret uppfattas som otillräcklig.
En granskning av Försäkringskassans akter för ärenden om assistansersättning
för barn visar dessutom att Försäkringskassans bedömningar
av föräldraansvaret varierar.
Av intervjuerna framgår vidare att det finns tydliga skillnader i utgångspunkten
av bedömningen av föräldraansvaret vid prövning av
barns rätt till personlig assistans, vilket också bekräftar resultaten
från aktstudien. Det förekommer till exempel att de intervjuade handläggarna
utgår från egna eller kollegors erfarenheter av vad barn i
en viss ålder klarar av, utöver den begränsade praxis som finns på
området.
Det har under åren i olika sammanhang konstaterats att Försäkringskassan
saknat verktyg för att säkerställa en enhetlig och rättsäker
tillämpning av principen om föräldraansvar i assistansersättningen.
Denna granskning visar att problemet kvarstår.
8
ISF föreslår att
Försäkringskassan utvecklar sin styrning och stödet till handläggarna
genom att ta fram ett verktyg för att bedöma vad
som är normalt i omhändertagandet av barn i olika åldrar, till
exempel enligt ett beprövat klassifikationssystem av typen
ICF-CY1
,
Försäkringskassan vidareutvecklar rutiner kring hur bedömningen
av föräldraansvaret dokumenteras i missiv och beslut
för att öka transparensen,
regeringen låter utreda utformningen av den rättsliga regleringen
av föräldraansvaret.
Vad är normalt? Föräldraansvaret i assistansersättningar
I bedömningen av barns rätt till assistansersättning ska Försäkringskassan
räkna bort det hjälpbehov som en vårdnadshavare normalt ska
tillgodose, det så kallade föräldraansvaret. Syftet med granskningen
är att undersöka hur Försäkringskassan tar hänsyn till föräldraansvaret
när den bedömer rätten till assistansersättning för personlig assistans.
Principen om normalt föräldraansvar finns i förarbetena till assistansreformen
år 1994, och fördes in i 51 kap. 6 § socialförsäkringsbalken
år 2011. Det framgår dock varken av bestämmelsen eller av
förarbetena till den hur föräldraansvaret ska avgränsas och bedömas.
Försäkringskassan beskriver inte i vägledningen när eller hur handläggare
ska göra avdrag för normalt föräldraansvar. Vid intervjuer
med handläggare vid lokala försäkringscenter (LFC) har det också
kommit fram att styrningen från huvudkontoret uppfattas som otillräcklig.
En granskning av Försäkringskassans akter för ärenden om assistansersättning
för barn visar dessutom att Försäkringskassans bedömningar
av föräldraansvaret varierar.
Av intervjuerna framgår vidare att det finns tydliga skillnader i utgångspunkten
av bedömningen av föräldraansvaret vid prövning av
barns rätt till personlig assistans, vilket också bekräftar resultaten
från aktstudien. Det förekommer till exempel att de intervjuade handläggarna
utgår från egna eller kollegors erfarenheter av vad barn i
en viss ålder klarar av, utöver den begränsade praxis som finns på
området.
Det har under åren i olika sammanhang konstaterats att Försäkringskassan
saknat verktyg för att säkerställa en enhetlig och rättsäker
tillämpning av principen om föräldraansvar i assistansersättningen.
Denna granskning visar att problemet kvarstår.
8
ISF föreslår att
Försäkringskassan utvecklar sin styrning och stödet till handläggarna
genom att ta fram ett verktyg för att bedöma vad
som är normalt i omhändertagandet av barn i olika åldrar, till
exempel enligt ett beprövat klassifikationssystem av typen
ICF-CY1
,
Försäkringskassan vidareutvecklar rutiner kring hur bedömningen
av föräldraansvaret dokumenteras i missiv och beslut
för att öka transparensen,
regeringen låter utreda utformningen av den rättsliga regleringen
av föräldraansvaret.
A new multidimensional measure of children’s perceptions of control
Perceived control plays a central role in many motivational and cognitive accounts of behavior. In this study, a new 48-item self-report instrument, the Multidimensional Measure of Children's Perceptions of Control, is described. Perceptions of control are defined as children's understanding of the locus of the sufficient cause for success and failure outcomes. 3 dimensions of third- through ninth-grade children's perceptions of control are independently assessed: internal, powerful others, and unknown. Each of these sources of control is assessed within 3 behavioral domains: (a) cognitive, (b) social, and (c) physical. General items are also included. Perceptions of control over success outcomes and failure outcomes are assessed separately. The psychometric properties of the new measure's subscales are presented. Correlations of the new measure with measures of perceived and actual competence and findings demonstrating the sensitivity of the new measure to developmental, gender, and environmental influences are reported. It is argued that the new measure is an advance over existing measures of internal versus external locus of control in children because it provides domain-specific assessments of 3 separate dimensions of locus of control, including the previously untapped dimension of unknown control.
Adult Attachment Interview
Bereaved children – family intervention
This book contains a selection of papers presented at the 10th International Congress of the International Association for Child and Adolescent Psychiatry and Allied Professions, held in Dublin in 1982. Developments currently taking place in child psychiatry and clinical child psychology are represented, and in particular, the two themes of processes within families and evaluation of intervention reflect important aspects of research activities that have emerged recently.
Children are people too! Chemical abuse prevention programs.
Children are people too! Chemical abuse prevention programs. Support group training manual: Children are people
Children's loneliness: A comparison of rejected and neglected peer status.
Recent research indicates that a considerable number of children report extreme feelings of loneliness and that unpopular children are more lonely than popular children. In the present study, we assessed feelings of loneliness of two subgroups of unpopular children, those who were sociometrically rejected versus those who were sociometrically neglected. Data on popular, average, and controversial children were also collected. Results from 200 third- through sixth-grade children indicated that rejected children were the most lonely group and that this group differed significantly from other status groups. Neglected children did not differ from higher status peers. Overall, the results provide added evidence of the utility of the distinction between neglected versus rejected status and provide support for earlier conclusions that rejected children are more at risk than are other status groups.
De äldre i samhället – förr. Projektet Äldre i samhället – förr, nu och i framtiden
Expressed emotions in families: its significance for mental illness
Family caregiving to the frail elderly
Childhood bereavement: distress and long term sequelae can be lessened by early intervention
When Alison Hargreaves lost her life climbing K2 in the Himalayas, her widower was strongly criticised for acceding to their 6 year old son's request to see "mummy's last mountain" and even more so when he took along on the trek their 4 year old daughter. But the ensuing expedition clearly enabled the children to process the information about their mother's death and to begin the task of mourning. As the general practitioner who accompanied and counselled the children reported,1 after seeing the mountain, building a memorial cairn at its base, and using a workbook designed to help young children to understand and come to terms with death,2 Kate was able to say, "Mummy had tried her best to come down and see us, but she just couldn't, the storm was so strong."
IQ, scholastic performance and behaviour in sibs raised in contrasting environments.
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.
Lagen angående omsorger om vissa psykiskt utvecklingsstörda
"Jag tar en dag i sänder - om ålderspensionerade anhörigvårdare".
“Speech After Long Silence”: The Use of Narrative Therapy in a Preventive Intervention for Children of Parents with Affective Disorder
This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural "canons" regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, "schematic base" of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.
A dispositional and situational assessment of children’s coping: Testing alternative models of coping
ABSTRACT Dispositional and situational measures of children's coping were developed using a theoretically based approach. Two studies (N1 = 217; N2 = 303) assessed the psychometric characteristics of these measures in fourth- through sixth-grade children. Confirmatory factor analyses indicated that a four-factor model of dispositional coping (active, distraction, avoidant, and support seeking) provided a better fit to the data than either the problemversus emotion-focused (Lazarus & Folkman, 1984) or passive versus active (Billings & Moos, 1981) coping models. The four-factor model was largely invariant with respect to age and gender. Moderate to high correlations were found between the parallel subscales of the dispositional and situational measures of coping. Although the four factor structures of the dispositional and situational measures were generally similar, factor loadings and correlations between dimensions were not equivalent.
A Prospective Four-Year Followup Study of Children at Risk for ADHD: Psychiatric, Neuropsychological, and Psychosocial Outcome
BACKGROUND:
Attention-deficit hyperactivity disorder (ADHD) is a familial disorder that places the siblings of ADHD children at high risk for ADHD, conduct, mood, and anxiety disorders. Although the pattern of psychiatric risk has been well documented by prior family studies, neither the short- nor long-term outcome of these high-risk siblings has been prospectively examined.
OBJECTIVE:
To document the 4-year psychiatric, psychosocial, and neuropsychological outcome of the siblings of children with ADHD.
METHOD:
DSM-III-R structured diagnostic interviews and blind raters were used to conduct a 4-year follow-up of siblings from ADHD and control families. The siblings were also evaluated for cognitive, achievement, social, school, and family functioning.
RESULTS:
At follow-up, significant elevations of behavioral, mood, and anxiety disorders were found among the siblings of ADHD children. The high-risk siblings had high rates of school failure and showed evidence of neuropsychological and psychosocial dysfunction. These impairments aggregated among the siblings who had ADHD.
CONCLUSIONS:
The siblings of ADHD children are at high risk for clinically meaningful levels of psychopathology and functional impairment. In addition to supporting hypotheses about the familial transmission of ADHD, the results suggest that the high-risk siblings might be appropriate targets for primary preventive interventions.
Det tårdränkta barnet : min berättelse om att bli pappa till ett barn med utvecklingsstörning
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
Cognitive behavior therapy-based psychoeducational groups for adults with ADHD and their significant others (PEGASUS): an open clinical feasibility trial
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.
Payments to Families Who Provide Care: An Option That Should Be Available
Preventing Child Placement in Substance-Abusing Families: Research-Informed Practice
The authors present finding from their study of a placement prevention program designed to facilitate addiction treatment for substance-abusing mothers and other primary caregivers reported for child maltreatment. Relationships between involvement in the program, the status of addiction treatment, and the variety of outcomes for caregivers and their children were tested. Findings indicate that nearly half of the participants were able to complete addiction treatment and achieve sobriety. Those who used the program's child day care component were three times more likely to complete treatment. Implications for confronting the problem of substance-abusing caregivers in the child welfare system are drawn.
"Learning to Become a Family Caregiver" Efficacy of an Intervention Program for Caregivers Following Diagnosis of Dementia in a Relative
Purpose: The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative. Design and Methods: Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition. Results: The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts. Implications: This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet. Adapted from the source document.
"Left alone with straining but inescapable responsibilities": Relatives’ experiences with mental health services
Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.
”So that´s how I found out I was a young carer and that I actually had been a carer most of my life”: Identifying and supporting hidden young carers
A common theme in the literature on care-giving is the issue of 'hidden' carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a 'normal' familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain 'hidden' and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.
Sofia vuxen med sitt MBD
I Sofias egen bok, som kom ut för 15 år sedan, beskrev Märta Tikkanen hur det är att ha och vara ett mbd-barn. Nu är hennes dotter vuxen, och som alla med mbd (numera oftast kallat damp, adhd eller add) har hon problem med impulskontroll, uppmärksamhet och i samspelet med andra människor. Det påverkar alla delar av livet: utbildning, yrkesval, boende, samlevnad. Att vara vuxen och ha mbd är svårt, men som Märta Tikkanen skriver mbd kan också stå för Mycket Bra och Duktig.
Det finns ytterligt lite skrivet om vuxna med mbd, och därför har Märta Tikkanen velat skildra hur livet kan gestalta sig, såväl ur Sofias synvinkel som ur Märtas egen som närstående.
Märta Tikkanen är mest känd för sin diktsamling Århundradets kärlekssaga (1978) som hittills tryckts i 130 000 exemplar enbart i Sverige.
A Preliminary Study of an Extension of a Community Dialectic Behaviour Therapy (DBT) Programme to Adolescents in the Looked After Care System
Background: Adolescents in the Looked After Care (LAC) system demonstrate high rates of psychiatric disorder and self‐harm; however, there is little evidence for therapies reducing self‐harm in this population. Method: An open evaluation of DBT for adolescents with repeated serious self‐harm in the LAC system was undertaken. Results: An intention‐to‐treat (ITT) analysis showed that DBT was successful at reducing the core elements of depression, hopelessness and self‐harm; however, 35% (7/20) failed to engage. Conclusion: DBT is a useful treatment option; the failure, however, of some adolescents to engage in therapy may be due to their higher initial rates of depression and hopelessness.
The AUDIT alcohol consumption questions (AUDIT-C) - An effective brief screening test for problem drinking.
Abstract
OBJECTIVE:
To evaluate the 3 alcohol consumption questions from the Alcohol Use Disorders Identification Test (AUDIT-C) as a brief screening test for heavy drinking and/or active alcohol abuse or dependence.
METHODS:
Patients from 3 Veterans Affairs general medical clinics were mailed questionnaires. A random, weighted sample of Health History Questionnaire respondents, who had 5 or more drinks over the past year, were eligible for telephone interviews (N = 447). Heavy drinkers were oversampled 2:1. Patients were excluded if they could not be contacted by telephone, were too ill for interviews, or were female (n = 54). Areas under receiver operating characteristic curves (AUROCs) were used to compare mailed alcohol screening questionnaires (AUDIT-C and full AUDIT) with 3 comparison standards based on telephone interviews: (1) past year heavy drinking (>14 drinks/week or > or =5 drinks/ occasion); (2) active alcohol abuse or dependence according to the Diagnostic and Statistical Manual of Mental Disorders, Revised Third Edition, criteria; and (3) either.
RESULTS:
Of 393 eligible patients, 243 (62%) completed AUDIT-C and interviews. For detecting heavy drinking, AUDIT-C had a higher AUROC than the full AUDIT (0.891 vs 0.881; P = .03). Although the full AUDIT performed better than AUDIT-C for detecting active alcohol abuse or dependence (0.811 vs 0.786; P<.001), the 2 questionnaires performed similarly for detecting heavy drinking and/or active abuse or dependence (0.880 vs 0.881).
CONCLUSIONS:
Three questions about alcohol consumption (AUDIT-C) appear to be a practical, valid primary care screening test for heavy drinking and/or active alcohol abuse or dependence.
The Labour market cost of community care
This paper reports an empirical investigation into the influence of informal care responsibilities on the labour supply of women. The objective is to examine the argument that the UK policy of caring for the chronic sick 'in the community' involves a nontrivial opportunity cost in the form of the forgone labour supply of the informal carers upon which it relies. We find that informal carers who care for less than 20 h per week are, in fact, more likely to participate in the labour market, but tend to work for fewer hours per week than otherwise similar noncarers. Informal carers who care for 20 h or more a week are less likely to participate, but only slightly. However, when they do undertake formal employment, they tend to earn less per hour and work for fewer hours per week.
The Maudsley Addiction Profile (MAP): a brief instrument for assessing treatment outcome
Aim. To develop a brief, multi-dimensional instrument for assessing treatment outcome for people with drug and/or alcohol problems. The Maudsley Addiction Profile (MAP) is the first instrument to be developed in the United Kingdom for this purpose. Design. Field testing with quota-recruitment of problem drug users and problem alcohol users in treatment with researcher and clinician-administered test-retest interviews. Setting. Two community and two inpatient services at the Bethlem Royal and Maudsley Hospital, London. Participants. Subjects (160 drug users and 80 alcohol users) interviewed by eight interviewers (four researchers and four clinicians), each of whom interviewed 30 subjects on two occasions. Measures. Sixty items across substance use, health risk, physical/psychological health and personal/social functioning domains. Findings. Average completion time of the MAP was 12 minutes. The questionnaire was acceptable to a majority of subjects and performed well with both researcher and clinician interviewers. Internal reliability and feasible concurrent validity assessments of the scales and items were highly satisfactory. Test-retest reliability was good, average intraclass correlation coefficients across eight substances were 0.94 and 0.81 across health risk, health problems, relationship conflict, employment and crime measures. Conclusions. The MAP can serve as a core research instrument with additional outcome measures added as required. The collection of a set of reliable quantitative measures of problems among drug and alcohol users by research or treatment personnel for outcome evaluation purposes need not be time-consuming.
Theorizing childhood
In recent years there has been a rapid growth of interest in the sociological study of childhood. This new book draws together the major developments in the field. In particular, the book discusses contemporary sociological and anthropological research in order to develop key links between the study of childhood and social theory, exposing its historical, political and cultural dimensions.
A typology of caregiving situations and service use in family carers of older people in six European countries: The EUROFAMCARE study
This paper presents the EUROFAMCARE study findings, examining a typology of care situations for family carers of older people, and the interplay of carers with social and health services. Despite the complexity of family caregiving situations across Europe, our analyses determined the existence of seven "caregiving situations," varying on a range of critical indicators. Our study also describes the availability and use of different support services for carers and care receivers, and carers' preferences for the characteristics of support services. Our findings have relevance for policy initiatives in Europe, where limited resources need to be more equitably distributed and services should be targeted to caregiving situations reflecting the greatest need, and organized to reflect the preferences of family carers.
Activity participation of children with complex communication needs, physical disabilities and typically-developing peers
Objective: To describe and compare the context of participation of children with physical disabilities and complex communication needs (Group CCN) in out-of-school activities with children with physical disabilities only (Group PD) and typically-developing peers (Group TD).
Method: A cross-sectional, matched, multi-group design was used. Thirty-nine participants between 10–15 years of age were administered the Children's Assessment of Participation and Enjoyment.
Results: Kruskall-Wallis analyses revealed that there were significant differences among the three groups for overall location, enjoyment of the activities and with whom they did the social and self-improvement activities with. Mean trends showed that Group CCN participated in activities closer to home rather than in the community, were restricted in social participation and reported higher levels of enjoyment in activity participation than the other two groups.
Conclusions: Group CCN appeared to experience differences in participation when compared to peers with and without disability.
Addressing Substance Abuse Treatment Needs of Parents Involved with the Child Welfare System.
The goal of this paper is to synthesize available data to help guide policy and programmatic initiatives for families with substance abuse problems that are involved with the child welfare system, and identify gaps in the research base needed to further refine practices in this area. To date, Family Treatment Drug Court and newly developed home-based substance abuse treatment interventions appear the most effective at improving substance abuse treatment initiation and completion in child welfare populations. Research is needed to compare the efficacy of these two approaches, and examine cost and child well-being indicators in addition to substance abuse treatment and child welfare outcomes.
Keywords: Substance Abuse, Child Welfare, Treatment
Adult Attention-Deficit/Hyperactivity Disorder and Driving: Why and How to Manage It.
Driving is a complex task that can be a significant challenge for individuals with attention-deficit/hyperactivity disorder (ADHD). A slight lapse in attention or inhibition while driving (not uncommon in individuals with ADHD) can result in hazardous consequences for these individuals and their families. This is also an interesting clinical scenario for the treating physician, who is always trying to optimize the various treatment options for the patient. Despite such potentially perilous consequences for society, this subject only recently has received researchers' attention. This review paper highlights the psychological differences between drivers with and without ADHD and examines differences between these groups in various driving simulation models. Research updates involving pharmacologic and nonpharmacologic interventions are discussed at length. Although the long-term effects of such interventions may not be clearly defined, there is enough evidence to suggest the public health significance of such interventions for optimally managing adult symptoms of ADHD.
AKK-Alternativ och kompletterande kommunikation för personer med autism.
Syftet med denna skrift är att beskriva olika typer av AKK-insatser till personer med autismspektrumstörning och vilken kunskap vi har om hur detta fungerat. Följande frågeställningar kommer att belysas:
Hur ser historiken kring AKK-intervention och autism ut – både i ett svenskt och internationellt perspektiv?
Vilken forskning har bedrivits inom området – vad vet vi när det gäller effekter av AKK-insatser?
Finns det belägg för att något AKK-sätt (tecken, bilder/PECS, talande hjälpmedel) fungerar bättre eller sämre för personer med autism?
När kan och bör man starta AKK-insatser?
Hur förhåller sig AKK till tal – behöver man vara orolig för att AKK hämmar utveckling av tal?
Vad verkar vara viktigt när det gäller intervention och metodik för att få AKK att fungera för gruppen?
Hur ser framtiden ut – särskilt med tanke på den enorma utvecklingen av digital och mobil teknik?
Anhörigstöd - ett helt annat sätt att tänka. Fokus-Rapport 2011:1
Författarna har tillsammans 100 års erfarenhet av verksamhet inom området äldre och funktionshindrade och deras familjer.
Rapporten belyser på ett insiktsfullt sätt den komplexitet i anhörigomsorg som ligger i sakens natur och diskuterar dess subtila nyanser.
Denna text är en oväderlig resurs för studenter inom vårdvetenskap, socialt arbete och rehabilitering, för personal som arbetar direkt med anhöriga i sitt dagliga arbete, för beslutsfattare med ansvar för anhörigstöd i kommunerna och för alla andra med intresse för ämnet.
Annas pappa får rättspsykiatrisk vård
Barn/ungdom
Text och illustrationer: Elisabet Alphonse
Här får vi en beskrivning hur det kan bli när en förälder blir intagen för rättspsykiatrisk vård.
Bereavement support for children
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.
Association between the caregiver's burden and physical activity in community-dwelling caregivers of dementia patients
Physical activity in the elderly has a significant influence on their health status. Studies have shown that elderly caregivers have fewer physical activities relative to non-caregivers. The present study aimed to identify factors associated with lower physical activity in elderly caregivers of demented patients. A cross-sectional survey of 50 elderly caregivers living with patients diagnosed with Alzheimer's-type dementia showed that the Zarit caregiver burden interview (ZBI) scores were significant predictors of physical activity measured by the questionnaire score (QS) of physical activities. Among the three subscales of the QS, it was only leisure time activity scores (LS) that the ZBI scores significantly predicted. The numbers of chronic diseases were associated with lower household activity scores (HS) and sport activities scores (SS). Physical activities, in particular leisure activities, were found to be inversely associated with care burden assessed by the ZBI. Interventions to increase the physical activity levels of older caregivers may improve their health status and quality of life.
Att förlora en förälder dödar: Vården måste ta större ansvar även för anhöriga’
Exit and Voice. An Investigation of Care Service Users in Austria, Belgium, Italy and Northern Ireland
The past decades have seen an introduction of market elements in the provision of social care services (Finer 1999; Mabbett and Bolderson 1999). Welfare state reforms all over Europe have produced welfare pluralism and claims that the increased choice will enhance user participation, promote older persons' autonomy, and improve the quality of services. Within the Fifth FP Research Project CARMA (Care for the Aged at Risk of Marginalization) a case study among users of care services in Austria, Belgium, Italy, and Northern Ireland was conducted that focussed on friction and conflict between clients and service providers and investigated the reasons for discharge and denial of admission to a service. The data from this study can be interpreted in terms of Hirschman's (Exit, voice, and loyalty: responses to decline in firms, organizations, and states. Harvard University Press, Cambridge, 1970) theory on 'exit' and 'voice' as expressions of consumers' dissatisfaction with the quality of a product. Data were collected in different systems offering a variety of procedures for exit from one provider and the choice of a competitor. Also different practices of handling voice i.e., complaints have been documented. The paper questions to what extent various possibilities for exit and voice can enhance users' autonomy and increase the quality of the service supply. It thus contributes empirical findings to a debate that often emphasizes ideological arguments.
I klyftan mellan olika världar : En kvalitativ studie: Anhörigvårdare med invandrarbakgrund berättar. C-uppsats
I nöd och lust : Att vara närstående till en person med demenssjukdom. (C-uppsats)
Intentional communication acts expressed by children with severe disabilities in high-rate contexts
The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 - 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.
Kan utbildning för anhörigvårdare vara ett stöd att hantera vardagen?
Att hantera vardagen - en utbildning som stöd för anhörigvårdare, ÄO FoU-rapport 2007:1. E. Johansson and K. Renblad
Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities
Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.
Mot en refamilisering av svensk äldreomsorg?
Projektrapport: Anhörig stöd vid Ersta sjukhus, Psykiatriska kliniken. Ht 2005 – Ht 2007
Ersta diakoni, Ersta sjukhus, Psykiatriska kliniken fick i Juli 2005 i uppdrag från Beställarkontoret vård vid Stockholms läns landsting (SLL) att under perioden hösten 2005 till 2007 utveckla stödinsatser riktat till anhöriga till personer med långvarig psykisk sjukdom. Uppdraget var länsövergripande och stödinsatserna skulle utformas som ett komplement till det stöd som patientens vårdgivare erbjöd. Projektet har fortlöpande genomförts i nära samverkan med intresseföreningar och psykiatriska verksamheter i Stockholms län, i syfte att optimalt tillgodose behovet av kompletterande stödinsatser bland anhöriga/närstående i länet. Stödinsatser och aktiviteter som anordnades var telefonrådgivning, psykopedagogiska grupper och öppna föreläsningar. I de 16 psykopedagogiska grupper som träffades vid fyra till sex tillfäller/grupp har totalt 204 grupper deltagit. I de sex öppna föreläsningarna med teman rörande anhöriga/närstående till person med psykisk sjukdom hat totalt ca 550 personer deltagit. De psykopedagogiska grupperna utvärderades via en enkät i samband med att de avslutades. Ett år efter avslutad grupp har fyra uppföljande fokusgruppsintervjuer genomförts bland syskon till person med psykossjukdom. I enkätutvärderingen framkom att att deltagarna värderade innehållet i föreläsningarna generellt högt. En klar majoritet uppgav att de hade fått mer kunskap om sjukdomen och behandlingen. En klar majoritet (87%) uppgav att erfarenhetsutbytet vid gruppträffarna varit till hjälp. Totalt svarande 94% att gruppträffarna varit till hjälp för dem. Mer än halva gruppen (60%) upplevde sig mindre stressade, eller att de var mindre irriterade eller oroliga vid svårigheter som har med sjukdomen att göra efter det att de deltagit i gruppträffarna. Nästan samtliga (97%) uppgav att de skulle vilja rekommendera denna form av träffar till andra personer. En majoritet (79%) önskade någon form av fortsättning eller uppföljning av träffarna, många förslag lämnades på hur dessa kan utformas. I fokusgrupperna deltog 13 personer. Eftersom det var för få personer som deltog planeras eventuellt ytterligare uppföljningar. Resultatet är ännu inte analyserat då eventuellt ytterligare intervjuer kommer att genomföras. I en första omgång framkom att majoriteten av deltagarna beskrev att träffarna haft betydelse; kunskapsmässigt och/eller känslomässigt. Även här framkom önskemål om någon form av fortsättning/uppföljning av träffarna. Deltagare som deltog i psykopedagogiska grupper under 2006 besvarade frågan "på vilka sätt de ansåg att den psykiatriska vården på bäst sätt kan hjälpa/stödja dem som anhörig/närstående till person med psykisk sjukdom". I svaren framkom förslag om hjälp/stöd på fyra nivåer; generellt stöd på samhällsnivå, eget stöd från vården, möjlighet att delta i vård och behandling samt god vård och behandling av den sjuke. Projektgruppens, som medverkade i och ansvarade för stödinsatserna, erfarenheter är att denna stödform är viktig som ett komplement till det stöd som bedrivs vid andra verksamheter i länet.
The Consequences of Attention-Deficit/Hyperactivity Disorder in Adults
Until recently, attention-deficit/hyperactivity disorder (ADHD) was a diagnosis reserved for children and adolescents as it was believed to dissipate before adulthood. New evidence, however, supports the persistence of ADHD beyond adolescence, and it is now recognized as a chronic neurobehavioral disorder in adults. Adults with ADHD have difficulties with school, work, family interactions, and social activities. Although treatments are available for adult ADHD, many patients never receive an accurate diagnosis that would afford them appropriate therapeutic intervention. If left untreated, adult ADHD can cause significant personal, social, and economic burdens that can have a negative impact on overall quality of life. This article discusses how ADHD presents in adults and the effects of the disorder on educational, occupational, interpersonal, and social functioning. Currently available treatments for ADHD in adults are also reviewed.
The earnings of informal carers: Wage differentials and opportunity costs
Abstract: A substantial proportion of working age individuals in Britain are looking after sick, disabled or elderly people, often combining their work and caring responsibilities. Previous research has shown that informal care is linked with substantial opportunity costs for the individual due to forgone wages as a result of non-labour market participation. In this paper we show that informal carers exhibit further disadvantages even when participating. Using the British Household Panel Study (BHPS) we decompose wage differentials and show that carers can expect lower returns for a given set of characteristics, with this wage penalty varying along the pay distribution and by gender. Furthermore, opportunity costs from forgone wages and wage penalties are estimated and found to be substantial.
The economic consequences of autistic spectrum disorder among children in a Swedish municipality
In this study, the societal economic consequences of autistic spectrum disorder were investigated using a sample of parents of children identified with the disorder and living in a Swedish municipality. Cost information was collected using a postal questionnaire that was developed through experiences gained from an earlier study. Using conservative assumptions, the additional societal cost due to the disorder was estimated to be approximately 50,000 annually per child. Parents of children with the disorder spent an average of about 1000 hours per year additionally caring for and supporting their child. The study indicates that the major cost drivers for autistic spectrum disorder among children can be found within the community for support and schooling, while the major impact on relatives is on time spent and thereby quality of life rather than a financial burden.
The effect of color on the recognition and use of line drawings by children with severe intellectual disabilities
Line drawings are commonly used as communication symbols for individuals with severe intellectual disabilities. This study investigated the effect of color on the recognition and use of line drawings by young children with severe intellectual disabilities and poor verbal comprehension who were beginning picture users. Drawings where the color of the picture matched the object and where the color of the drawing did not match the object were used, as well as black and white line drawings. Tentative findings suggest that some students with intellectual disabilities may find it more difficult to recognize and line drawings where the color does not match the object compared to line drawings where the color of the drawing does match the color of the object.
Quality of Care in the Psychiatric Setting: Perspective of the Patient, Next of Kin and Care staff
The overall aim of this thesis was to describe quality of care from different perspectives in the psychiatric setting, to develop an instrument for measuring quality of care from the in-patient perspective and to use this instrument empirically. A qualitative descriptive design involving a phenomenographic analysis was used in Studies I, III and IV, and a descriptive and comparative design with statistical analysis in Study II.In Study I, 20 patients were interviewed. The results showed that quality of care was perceived as a positive, normative concept namely as good quality of care. Five descriptive categories emerged: the patient's Dignity is respected; the patient's sense of Security with regard to care; the patient's Participation in care; the patient's Recovery; and the patient's care Environment. In addition, two conceptions that had not explicitly emerged in previous studies on quality of care were identified: Being helped to reduce the shame and Being looked upon as like anyone else.In Study II a definition of quality of care from a patient perspective was formulated on the basis of the results in Study I. A two-part instrument the Quality in Psychiatric Care (QPC) was developed for measuring the patients' expectations regarding quality of care (QPC-1) and their subsequent experience of it (QPC-2). One hundred and sixteen patients answered both parts of the instrument. Overall, the quality of care was rated high in both parts. However, experienced quality of care was significantly lower than the patient's expectations in all the dimensions of the instrument: Total dimension, Dignity, Security, Participation, Recovery and Environment. Patients who perceived that the time of discharge was consistent with the stage of their illness experienced significantly higher Recovery; patients with good psychiatric health also experienced this, but had in addition significantly higher levels of Participation. This new instrument exhibited too high Cronbach's alpha values (QPC-1 0.87–0.98, QPC-2 0.85–0.98), which means the instrument needs to be further tested in order to improve its psychometric properties.Twelve next of kin were interviewed in Study III. The next of kin described quality of care mainly from their own perspective, but also to a large extent from the patient's perspective as well. They described it in both positive and negative terms. Five descriptive categories resulted: Dignity, Security, Participation, Recovery and Health-promoting surroundings. Good relations and communication between staff, patients and next of kin emerged as the central factors regarding the quality of care. The next of kin asked for information about mental illnesses and wanted to co-operate and participate in the patient's care. They avoided telling others about their family member's psychiatric illness because of a feeling of shame and guilt.In Study IV, 20 care staff and care associates were interviewed. They described quality of care both from the patient's perspective and from a professional perspective. They perceived the concept as a positive one and as being of great importance for the patient's health and life situation. Four descriptive categories resulted: the patient's Dignity is respected; the patient's Participation in the care; the patient's Recovery; and the patient's care Environment plays an important role.The main contribution of this thesis with regard to the concept of quality of care in the psychiatric setting is its emphasis on the significance of the different perspectives described above, as such knowledge is vital when planning and implementing and evaluating quality of psychiatric care. In addition, the descriptive categories that emerged in this thesis clearly highlight the importance of interpersonal relationships in the care situation. The new instrument (QPC) needs psychometric testing before it routinely can be used as a self-rating instrument for the purpose of improving psychiatric inpatient care and help guide the proper allocation of care resources.
Randomized trial of parent management training in children with tic disorders and disruptive behavior. Journal of child neurology
Oppositional, defiant, and disruptive behaviors are common in clinical samples of children with tic disorders. In this study, we sought to evaluate the short-term efficacy of a structured parent training program in children with tic disorders accompanied by disruptive behavior. Children with tic disorders and at least a moderate level of disruptive behavior were randomly assigned to a 10-session structured parent management training program or to continue treatment as usual. Twenty-four children (18 boys and 6 girls) between the ages of 6 and 12 years (mean 8.9 +/- 2.0 years) were enrolled; 23 subjects completed the study. At baseline, subjects showed moderate to severe levels of oppositional and defiant behavior. Twenty subjects (83%) were on stable medication. The parent-rated Disruptive Behavior Rating Scale score decreased by 51% in the parent management training group compared with a decrease of 19% in the treatment as usual group (P < .05). On the Improvement scale of the Clinical Global Impression, a rater masked to treatment assignment classified 7 of 11 subjects who completed parent management training as much improved or very much improved compared with 2 of 12 subjects in the treatment as usual group (Fisher exact test, P < .05). These results suggest that parent management training is helpful for short-term improvement in disruptive behavior problems in children with tic disorders. Larger randomized clinical trials are needed.
The support of parents in old age by those born during 1945-1954: A European perspective
The use of an internet-based ask the doctor service involving family physicians: Evaluation by a web survey
Tillsammans men var för sig. Om särboenderelationer mellan äldre kvinnor och män i Sverige
Toward a comprehensive developmental model for major depression in men
Abstract
OBJECTIVE:
The multiple risk factors for major depression are interrelated through poorly understood developmental pathways. In 2002, the authors presented a developmental model for major depression in women. Based on similar methods, they here present an analogous model for men.
METHOD:
Using data from 2,935 adult male twins, interviewed twice over a 2-4-year period, the authors constructed, by means of structural equation modeling, an integrated etiologic model for major depression that predicts depressive episodes over 1 year from 18 risk factors conceptualized as five developmental "tiers" reflecting childhood, early adolescence, late adolescence, adulthood, and the last year.
RESULTS:
The best-fitting model, including six correlations and 76 paths, provided a good fit to the data, explaining 49% of the variance in the liability to depressive episodes. The overall results, similar to those seen in women, suggest that the development of major depression results from the action and interaction of three broad pathways of internalizing symptoms, externalizing symptoms, and adversity. Childhood parental loss and low self-esteem were more potent variables in the model in men than in women. Genetic risks for major depression had a broader spectrum of action in men than in women. The pathway to major depression through externalizing symptoms was not more prominent in men than in women.
CONCLUSIONS:
Major depression in men, as in women, is an etiologically complex disorder influenced by risk factors from multiple domains that act in developmental time. The similarities in etiologic pathways to major depression for men and women outweigh the modest differences.
Treating trauma and traumatic grief in children and adolescents
This is the authoritative guide to conducting trauma-focused cognitive-behavioral therapy (TF-CBT), a systematic, evidence-based treatment for traumatized children and their families. Provided is a comprehensive framework for assessing posttraumatic stress disorder, depression, anxiety, and other symptoms; developing a flexible, individualized treatment plan; and working collaboratively with children and parents to build core skills in such areas as affect regulation and safety. Specific guidance is offered for responding to different types of traumatic events, with an entire section devoted to grief-focused components. Useful appendices feature resources, reproducible handouts, and information on obtaining additional training. TF-CBT has been nationally recognized as an exemplary evidence-based program.
Ung och oberoende – En studie av Maria Ungdoms klienter. I rapport - Vad vet vi om narkotikaanvändarna i Sverige, sid 31-37.
Unga vuxna med en historia av uppförandestörning. – En långtidsuppföljning med ett salutogent och ekologiskt perspektiv
Denna avhandling innehåller en huvudstudie och en delstudie. Syftet med huvudstudien var att följa upp en grupp ungdomar som hade blivit diagnostiserade med uppförandestörning (n=351) i det unga vuxenlivet. Delstudiens syfte var att ifrågasätta och klargöra frågeformuläret KASAM-29 och dess förhållande till den salutogena teorin. I avhandlingen användes olika utfallsvariabler och utfallsmått, vilka även diskuterades. Två perspektiv på utfall användes, ett salutogent och ett ekologiskt.
Det salutogena perspektivet kunde användas först efter att delstudien var klar. Delstudien visade att KASAM-29 är ett reliabelt och validt mätinstrument. Dessutom visade delstudien att huvudbegreppet i den salutogena teorin Känslan av sammanhang bör betraktas som ett holistiskt begrepp.
Huvudstudien följde upp 290 ungdomar i deras unga vuxenliv (medelålder 21 år). Utifrån det salutogena perspektivet, KASAM-29, hade ungefär hälften männen (43 %) och kvinnorna (56 %) ett negativt utfall. Det ekologiska perspektivet bestod av sju enskilda variabler: låg utbildningsnivå, transfereringsinkomst, hög symtombelastning, missbruk, kriminalitet och dygnsvård för vuxna. Genom att kombinera dessa enskilda variabler, hade ungefär två tredjedelar av männen (68-70 %) och ungefär hälften av kvinnorna ett negativt utfall i vuxenlivet. Dessa utfallsmått kunde inte substantiellt prediceras av variabler från deras medicinska patient journal.
Huvudstudien är en av få nationella och internationella långtidsuppföljningar bestående av ett kliniskt urval av ungdomar diagnostiserade med uppförandestörning. Studien visar att det är möjligt att genomföra denna typ av studier med ett litet bortfall. Individer diagnostiserade med uppförandestörning har en förhöjd risk för ett problematiskt vuxenliv. Vuxenlivet kan beskrivas på många olika sätt. Men slutsatsen är att utfallet i vuxenlivet beror på valet av utfallsmått. För att besvara frågan hur stor del av ungdomarna som hade ett negativt utfall i vuxenlivet måste utfallsmåttet först specificeras. Specificeringen måste klargöra utfallsmåttets uppbyggnad och definition. Först därefter kan frågan verkligen besvaras.
Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports
The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.
Using the ICF in goal setting: Clinical application using Talking Mats
Purpose. The purpose of this article is to suggest how Talking Mats® can be used in accordance with the International Classification of Functioning, Disability and Health (ICF) proposed by the World Health Organisation (WHO) when setting intervention goals.
Method. A theoretical framework for using Talking Mats® when setting intervention goals in accordance with the ICF is provided.
Conclusions. An international system such as the ICF offers a conceptual framework that can be used to set appropriate goals for intervention. Talking Mats® on the other hand can be seen as the strategy through which individuals can be empowered to participate in this goal-setting activity.
Utveckling av anhörigstöd i Jämtlands län.
Vad är psykiskt funktionshinder? Nationell psykiatrisamordning ger sin definition av begreppet psykiskt funktionshinder
Statens offentliga utredningar
Vem ska ta hand om mamma? : Tema : Att vara anhörig
Veteranradio [ljudupptagning] : Anhöriggrupper
Who knows best? Evidence-based practice and the service user contribution
This paper reviews the assumptions underlying traditional medical research and critiques the concept of 'evidence-based practice'. In particular, it identifies and counters three basic tenets of this approach: the alleged need for objectivity in research, the notion of hierarchies of evidence and the primacy of systematic reviews. Instead, the paper argues for a new emphasis on 'knowledge-based practice', recognizing that the practice wisdom of health and social care practitioners and the lived experience of service users can be just as valid a way of knowing the world as formal research.
Widowhood and race
The health effects of marital status are frequently cited in the current debate on marriage promotion, but little is known about how marital health effects vary across groups. This article assembles the largest properly longitudinal and nationally representative dataset of elderly married couples in the United States (N = 410,272 couples) and provides strong evidence that the "widowhood effect"—how the death of a spouse increases the mortality of the survivor-varies substantially by race. The authors find that whites married to whites suffer a large and enduring widowhood effect. By contrast, blacks married to blacks do not suffer a detectable widowhood effect, possibly because they manage to extend the survival advantage of marriage into widowhood. For racially intermarried men, wife's race appears to dominate the size and presence of the widowhood effect entirely, regardless of husband's own race. These results likely arise from differences in the marital cultures and marital contexts of black and white couples. More generally, these results demonstrate that the health effects of social ties depend on the individual attributes of the actors they connect.
Work/family reconciliation, equal opportunities and social policies. The interpretation of policy trajectories at the EU level and the meaning of gender equality
Vuxna med förvärvad traumatisk hjärnskada – omställningsprocesser och konsekvenser i vardagslivet. En studie av femton personers upplevelser och erfarenheter av att leva med förvärvad traumatisk hjärnskada
The overall purpose of this study is to illuminate the changeover process experienced by individuals who as adults acquired a traumatic brain injury (TBI), to increase the knowledge and the understanding of this process, and describe the meaning of support in every day life.Persons who acquired a TBI as adults were administered a semi-structured interview covering six areas: consequences of TBI, family and social networks, working life and occupation, life-changes, support from society and everyday life. The interviews were qualitative and in-depth. A total of 15 informants participated, aged between 19-53 years when injured. Data were structured and underwent two phases of analysis. In the first phase, data underwent latent content analysis, underpinned by a hermeneutic approach, and in the subsequent phase, reanalysed within a framework derived from the theory of social recognition.Findings from the first phase of inductive analysis elicited key themes: (i) the meaning of care, a question of formal and/or informal support; (ii) the meaning of action, a question of activity versus inactivity; (iii) autonomy, a question of dependence versus independence; (iv) social interaction, a question of encounter and/or treatment; (v) the theme of changes, a question of process versus stagnation; and (vi) emotions, an oscillation between hope versus hopelessness. After the construction of the six themes each of them were, through a discursive analysis, connected with theories, earlier studies in the field of brain injuries and important interview quotations from the empirical material. During this phase, an interest developed to study the material from a new theoretical point of view. The second phase of analysis therefore involved the development of a framework derived from Honneth's (1995) theory of social recognition. The central construct of 'recognition' was analysed from three different dimensions proposed by Honneth: the individual dimension, the legal dimension, the value dimension. Using this framework, the data were reanalysed. The scientific term for this process of re-contextualisation and re-description of data is abduction inference.Reported consequences were negative as well as positive. Significant others (e.g. next of kin) had an important function as a driving force for training and preparation for life-situation after injury. A majority of the informants were satisfied with support from society, such as hospital-care, rehabilitation and community support. Such support, initially, proceeded without problems but as time passed, the responsibility shifted to the person with TBI to take the initiative in arranging longer-term services. Long-term support which addresses physical, cognitive as well as psychosocial consequences of the TBI is important for outcomes. The majority of the informants had difficulties in returning to working life after the injury. The outcomes and recovery seemed to be a prolonged process, probably never ending, but which gradually over time becomes integrated as a part of life. The informants gave varying accounts of the extent to which they experienced social recognition.
Vuxna med neuropsykiatrisk diagnos får inte tillräcklig hjälp: Kartläggning visar på omfattande behov av behandling och stöd
Våld i särskilda boenden för äldre : involverade vårdares berättelser (Lic.)
Våld i särskilda boenden för äldre : involverade vårdares berättelser [Lic.].
Vårdplanering en utmaning för anhöriga : Tema : Att vara anhörig
Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice
This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.
Young children of parents with substance use disorders (SUD): a review of the literature and implications for social work practice.
This article reviews the scientific literature that focuses on school-age children of parents with substance use disorder (SUD). The review examined the subjects, instruments, and results of 10 scientific studies published from 1985 to the present (2006). Generally, school-age children of parents with SUD demonstrated a variety of emotional, cognitive, behavioral, and social problems. Specifically, (a) children of drug users (CODs) were at higher risk than children of alcoholics (COAs) for psychopathology and functional impairments, and (b) Children of parents diagnosed as having SUDs (particularly alcohol), along with anti-social personality disorder (ASPD) showed more negative psychosocial outcomes than children whose parents did not have ASPD. Recommendations for future research and implications for social work practice are discussed.
Åldrandet och äldreomsorgen
Äldreomsorgen är beroende av att anhöriga stöttar
Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen
Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.
Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.
Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.
Nyckelord: Specialpedagogik, pedagogisk kompetens, barn- och ungdomshabilitering, kunskapsområden, verksamhetsfält, yrkesspråk, talgenrer, fokusgrupper, metaforer, tidig intervention, anpassat vardagligt språk, fronesis.
Ögonblickets pedagogik: yrkesgrupper i samtal om specialpedagogisk kompetens vid barn-och ungdomshabiliteringen
Doktorsavhandling i pedagogik
Avhandlingen gäller specialpedagogisk kompetens hos pedagoger som arbetar i tvärprofessionella team inom barn och ungdomshabiliteringen. Ögonblickets pedagogik står för de reflektioner som görs i mötet med barnet, i dess olika miljöer, och som leder till åtgärder. Dessa avgöranden om specialpedagogisk intervention baseras på teoretiska och praktiska kunskaper, liksom erfarenheter som utvecklats genom det samverkande teamarbetet.Den empiriska studiens syfte var att studera hur pedagogisk kompetens kommuniceras, reflekteras och konstrueras av och mellan medlemmar i yrkesgrupper inom barn- och ungdomshabiliteringen. Det har studerats genom fokusgrupper som efteråt utvärderats med ett skattningsformulär där deltagarna också givit information om utbildning och arbetsuppgifter. Informanter är pedagoger i fem yrkesgrupper samt i en tvärgrupp, och tre grupper med andra yrkeskategorier verksamma i team inom barn- och ungdomshabiliteringar. Analysarbetet genererade en kodnyckel för turtagningsanalys.
Resultatet visar att pedagoger inom barn- och ungdomshabiliteringen inte har utvecklat specifika professionsstrategier. De har snarast anpassat sig till ett föränderligt uppdrag. Kompetensen hos habiliteringens pedagoger baseras på kunskaper och erfarenheter från tre verksamhetsfält. Den grundläggande kompetensen ligger inom förskolefältet med teoretiska och erfarenhetsbaserade kunskaper om barns utveckling och lek- och lärande. Det var förskollärare som införde lekpedagogiskt arbete i och med lekoteken under 1970-talet. Under 1980-talet utvecklades den samordnade barn- och ungdomshabiliteringen där pedagogik tillsammans med medicinsk-, social- och psykologisk kompetens utgör hörnstenar i det professionella teamarbetet. Det är i det familjeorienterade teamarbetet som den specialpedagogiska kompetensen för barn med funktionshinder utvecklas. Det specialpedagogiska fältet har pedagogerna inom habiliteringen med påbyggnadsutbildningen. Utbildningen är i första hand riktad mot skolan och informanterna efterfrågar forskning och kunskapsbildning som gäller barn-och ungdomshabilteringens problemområden. Pedagogernas yrkesspråk karaktäriseras av en vardagsspråklig terminologi som är väl anpassad till uppdraget. Pedagogerna och deras kollegor i teamen framhåller att pedagogen fungerar, genom sitt yrkesspråk och barnfokus, som överbryggare mellan det medicinska fältet och det pedagogiska sammanhanget i barnets vardagliga miljöer i förskola och i hemmet.
Pedagogernas yrkesgruppssamtal visar sig vara en talgenre där pedagoger huvudsakligen förstärker varandras utsagor, använder metaforer i konstruktionen av den gemensamma förståelsen och i mycket begränsad utsträckning ifrågasätter varandras uppfattningar inom gruppen. Kompetensen är baserad på kunskap om och erfarenheter av barns normala och avvikande utveckling liksom av barns lek och lärande. Pedagogerna i studien lyfter huvudsakligen fram det pedagogiska mötet med vuxna omkring barnet, främst föräldrar och personal i förskolan, då de exemplifierar sin kompetens. Det specifika specialpedagogiska arbetet med barn i grupper och det lekpedagogiska interventionsarbetet är mer sällan omnämnt i yrkesgruppssamtalen.
- See more at: http://www.skolporten.se/forskning/avhandling/ogonblickets-pedagogik-yrkesgrupper-i-samtal-om-specialpedagogisk-kompetens-vid-barn-och-ungdomshabiliteringen/#sthash.JQdaHFR7.dpuf
Bibliotherapy: using books to help bereaved children
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.
Does grief counseling work?
Most bereavement caregivers accept as a truism that their interventions are helpful. However, an examination of the bereavement intervention literature suggests that the scientific basis for accepting the efficacy of grief counseling may be quite weak. This article summarizes the findings of four recent qualitative and quantitative reviews of the bereavement intervention literature. It then discusses three possible explanations for these surprising findings and concludes with recommendations for both researchers and clinicians in thanatology that could help to focus efforts to answer the questions of when and for whom grief counseling is helpful.
Exposure to family violence in young at-risk children: A longitudinal look at the effects of victimization and witnessed physical and psychological aggression
This study examines the contribution of specific types of family violence exposure (e.g., victim vs. witness; physical vs. psychological) to aggressive and anxious/depressed problem behaviors in young (i.e., 6-year-old) at-risk children. This multisite prospective study of 682 children from four different regions of the country asked mothers and their 6-year-old children to report on violence exposure in their families. After controlling for mother reports of child problem behaviors on the Child Behavior Checklist at Age 4, it was found that subsequent exposure to family violence predicted reported problem behaviors at Age 6. Although mothers' report of child victimization predicted subsequent problem behaviors, witnessed violence was related to these problems only when both mothers and children reported its occurrence. The results of this study suggest that even though there was a relationship between witnessed and directly experienced family violence, both had independent, noninteractive effects on subsequent behavior problems.
Föräldrastöd i teori och praktik
Flertalet vetenskapliga studier har visat att det finns ett samband mellan barns och ungdomars upplevelser i familjen och utvecklingen av en kriminell livsstil. Föräldrastödjande verksamhet har blivit ett samlingsnamn för de åtgärder och projekt där föräldrar är delaktiga i arbetet med att förhindra sociala problem hos sina barn.
Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach
Children's exposure to violence, their psychological response to the violence, and their participation in a community-based intervention service were described. This article describes the provision of mental health services and the process evaluation for the initial phase of the program (1999-2000). A large number (N = 1739) children were referred to the program over a 17.5-month period for mental health intervention immediately after witnessing and experiencing a range of violent acts, the majority of which (N = 1355) involved domestic violence. A majority of referred children and adolescents (N = 946) directly witnessed such violence, and the majority of those who were old enough to provide self-report indicated that they perceived the event as a direct threat to their safety. Many of these children and adolescents also reported high levels of trauma symptoms. The majority of children (N = 1117) who were referred to the program participated. The findings underscore the feasibility of developing mental health services to meet the needs of children who are exposed to violence, especially family violence, at a critical time following violence exposure.
Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.
Twelve families responded to posters displayed in a methadone clinic for inclusion in a pilot study assessing the viability and potential utility of an intensive, multi-component family-focused intervention, the Parents Under Pressure programme. The programme was designed to improve child behaviour, decrease parental stress and improve family functioning in methadone-maintained families by targeting affect regulation, mood, views of self as a parent, drug use and parenting skills. Nine of the families completed the programme delivered in their homes; eight were recontacted at 3 months. Each family reported significant improvements in three domains: parental functioning, parent-child relationship and parental substance use and risk behaviour. In addition to the changes in family functioning, the majority of families reported a decrease in concurrent alcohol use, HIV risk-taking behaviour and maintenance dose of methadone. The families reported high levels of satisfaction with the programme. It is recommended that future studies include independent measures (e.g. behavioural observations) of child outcome and parental functioning. The results were optimistic and provided the impetus to evaluate the treatment programme using a randomized controlled trial.
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Sju år efter reformen. Andra uppföljningen av medicinskt färdigbehandlade inom sluten psykiatrisk vård
The Timeline Followback Spousal Violence Interview to Assess Physical Aggression Between Intimate Partners: Reliability and Validity
The psychometric properties of the Timeline Followback Spousal Violence interview (TLFB-SV), a calendar method used to assess daily patterns and frequency of spousal violence, were evaluated. Men (N = 104) entering a spousal violence treatment program, along with their female partners, were interviewed with the TLFB-SV at pretreatment, posttreatment, and quarterly thereafter for 1 year and asked to identify days of male-to-female and female-to-male physical aggression that had occurred between them. For posttreatment and follow-up interviews, participants maintained a weekly diary, in which they catalogued the days on which acts of spousal violence occurred. The subscale scores derived from the TLFB-SV, the proportion of days of any violence, and proportion of days of severe violence for each partner were calculated for each assessment interval. The TLFB-SV subscales had excellent temporal stability and concurrent and discriminant validity. Interpartner agreement on TLFB-SV subscale scores and agreement between partners on days when spousal violence occurred was low at pretreatment, but was high for the other assessment periods.
"Det är vi och vi är tillsammans" : Sju manliga anhörigvårdare berättar.
‘Norms and ideals about elder care in a European comparative perspective’.
”Are there any clinical characteristics of depression in elderly people that could be useful for case finding in general practice?”
OBJECTIVES:
The aim of this study was to identify clinical characteristics of depression in elderly people that could be useful for case finding in general practice.
DESIGN:
A cross-sectional study of clinical characteristics through review of medical records.
SETTING:
Herrhagen health centre, Karlstad, Sweden.
SUBJECTS:
Seventy-one persons with a high depressive score in a screening of depressive symptoms and an age-matched and sex-matched control group of 138 persons with a low depressive score.
RESULTS:
The high depressive score group had an increased relative risk for "mental health problems" (RR 3.4; CI 95% 1.7-7.2), "many contacts with the health care centre" (> or = 14/3 years) (RR 2.9; CI 95% 1.4-6.1), and prescriptions of benzodiazepines (RR 1.7; CI 95% 1.0-2.9). Two-thirds of those in the high depressive score group had at least one of these characteristics. However, three-quarters of those with any of these characteristics had a low depressive score. In our population of elderly people with an estimated prevalence of 10.2% the positive predictive value would be 21% and the negative predictive value 95%.
CONCLUSION:
General practitioners should suspect a possible depressive disorder in elderly patients with mental health problems, with frequent contacts with the health centre or with prescriptions of benzodiazepines. Despite the high occurrences of these prominent clinical characteristics in the high-score group, they did not unfortunately have sufficient discriminatory power to be useful for case finding.
A different parenthood?
Doktorsavhandling
A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service
Objective: To investigate stroke patients' and carers' perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.
Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.
Setting: Community stroke services in North Nottinghamshire, UK.
Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.
Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.
AAC and Scripting Activities to Facilitate Communication and Play
Many children with developmental disability have limited skills in both play and communication. In this study, the effects of a naturalistic intervention approach to play and symbolic communication was investigated within a single-subject multiple baseline design. The intervention involved scripting play activities and modelling vocabulary in speech and the augmentative and alternative communication (AAC) modality of sign. An additional intervention phase was introduced, wherein the AAC intervention was expanded to include an electronic communication device. The results indicated that modelling and scripted play activities resulted in increases in symbolic play, while changes in types of functional play were evident, while its frequency was somewhat erratic across baseline and intervention phases. Improvements in communication were more evident when a multimodal AAC approach was used in modelling than when sign was used alone. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Action theory, disability and ICF
Purpose: The purpose of this paper is to make a critical analysis of the conceptual platform of the recently introduced International Classification of Functioning, Disability and Health (ICF). Special attention is paid to the suggested definitions of the concepts of activity and participation. My argument intends to show that these definitions are not coherent. Methods: The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinction between capacity and opportunity and shows that both concepts are applicable to all actions. Capacity and opportunity are distinguished from the actual performance of actions. The latter presupposes the existence of a will. On this conceptual basis follows an analysis of the distinction between activity and participation as conceived by the WHO in ICF. Conclusions: The main conclusion of my reasoning is that the notions of activity and participation in ICF partly rest on confusion between capacity for action and the actual performance of an action. If my conclusion is sound this has far-reaching consequences for the application of the ICF in the practice of rehabilitation. My diagnosis therefore is that the conceptual framework of ICF is in great need of a strict action – theoretic reconstruction.
Adjö Herr Muffin
Herr Muffin är ett marsvin som nu är gammal, trött och har ont i magen. Han tänker tillbaka på sitt liv och hur bra han har haft det. Han har haft fru och sex lurviga ungar, fått mycket gurka och hö. En dag ligger ett brev i hans postlåda och i brevet står det "Jag är ledsen för att pappa säger att när ett marsvin är gammal kan det plötsligt dö...." Boken om Herr Muffin berättar om ålderdom och död på ett fint och stillsamt sätt. En bilderbok som passar barn från 3 år.
Alcohol, Drugs and the Family: Results from a Long-Running Research Programme within the UK
This article will outline the main strands of the UK-based Alcohol, Drugs and the Family (ADF) research programme. This programme has examined the impact of substance misuse problems on children, spouses, and families, both in the UK and elsewhere, especially in urban Mexico City and in Australia amongst both urban and rural Aborigine populations. This article will outline the main theoretical perspective that we have developed from this work (the stress-strain-coping-support model). It will outline some of the key findings of this programme, and address some of the key universals that we have observed across various cultures. It will end by describing current research, including the testing of brief interventions being delivered through primary care to family members to enable them to cope better with the problems which family substance misuse causes.
Anhörigskapets uttrycksformer
Sedan början av 1900-talet har samhällets intresse ökat för den informella, oavlönade hjälp som många människor regelbundet ger till sina närstående. "Anhöriga" har kommit i blickfånget, framför allt anhöriga till äldre. Bakgrunden är bl.a. tilltagande vård- och omsorgsbehov men också en nyvaknad insikt om det informella hjälparbetets betydelse. Men hur ska man egentligen förstå anhörigbegreppet? Vad är det för slags hjälpinsatser som anhöriga utför? Hur vanliga är de och vad består de av?
The meaning of outdoor physical activity for parentally bereaved young people in the United Kingdom: insights from an etnographic study
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.
The modified self: Family caregivers’ experiences of caring for a dying family member at home
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.
The relationship of personal factors and subjective well-being to the use of assistive technology devices
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.
The use of multisensory environments in schools for students with severe disabilities: Perceptions from teachers
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.
Theorizing care and care work
Time does not heal all wounds. Mortality following the death of a parent
Time does not heal all wounds. Mortality following the death of a parent
Trauma-focused CBT for traumatic grief in military children
Traumatic loss in children and adolescents
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.
Treatment outcomes and mediators of parent management training: a one-year follow-up of children with conduct problems
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.
Understanding autism : parents, doctors, and the history of a disorder
Using content analysis to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for Children and Youth (ICF-CY).
OBJECTIVE:
To explore how content analysis can be used together with linking rules to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for children and youth (ICF-CY).
METHODS:
Individual habilitation plans containing texts on assessment and intervention for children with disabilities and their families were linked to the ICF-CY using content ana-lysis. Texts were first divided into meaning units in order to extract meaningful concepts. Meaningful concepts that were difficult to link to ICF-CY codes were grouped, and coding schemes with critical attributes were developed. Meaningful concepts that could not be linked to the ICF-CY were assigned to the categories "not-definable" and "not-covered", using coding schemes with mutually exclusive categories.
RESULTS:
The size of the meaning units selected resulted in different numbers and contents of meaningful concepts. Coding schemes with critical attributes of ICF-CY codes facilitated the linking of meaningful concepts to the most appropriate ICF-CY codes. Coding schemes with mutually exclusive categories facilitated the classification of meaningful concepts that could or could not be linked to the ICF-CY.
CONCLUSION:
Content analysis techniques can be applied together with linking rules in order to link texts on assessment and intervention to the ICF-CY.
Using shared stories and individual response modes to promote comprehension and engagement in literacy for students with multiple, severe disabilities
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.
Using the communication matrix to assess expressive skills in early communicators
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.
Using the Communication Matrix to Assess Expressive Skills in Early Communicators
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.
Using the Communication Matrix to Assess Expressive Skills in Early Communicators
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.
Utveckling av strukturerade samtal med närstående till patienter inskrivna i den avancerade hemsjukvården. Ett vårdutvecklingsprojekt hos cancerfonden 2009-2010
För att palliativ vård i hemmet ska fungera bra är de närståendes medverkan i vården oftast en
nödvändig förutsättning. Närståendes roll i palliativ hemsjukvård är unik i och med att de inte
bara har en stödjande roll för den sjuke utan också själva är i stort behov av stöd.
Den avancerade hemsjukvården i Uppsala sköts av Sjukvårdsteamet som erbjuder en
avancerad medicinsk vård i det egna hemmet för patienter med en komplicerad sjukdomsbild.
Sjukvårdsteamet har i tidigare vårdutvecklingsprojekt utvecklat stödgrupper som erbjuds till
närstående under patientens vårdtid samt ett strukturerat efterlevandestöd. Det som fattats i
närståendestödet är ett enskilt samtal (där patienten inte är med) med närstående i samband
med patientens anslutning till vården. Utvecklingen och införande av strukturerade samtal
med närstående till patienter inskrivna i Sjukvårdsteamet genomfördes under tiden 1.1.2009–
31.1.2010 genom ett vårdutvecklingsprojekt med stöd av Cancerfonden.
Resultat
Under projekttiden hölls 61 samtal. Det var svårt att bryta ut det strukturerade samtalet från
Sjukvårdsteamets verksamhet i stort, eftersom närstående ansåg att samtalet var en del i en
pågående process. Många poängterade det värdefulla med att få ha ett eget samtal där
patienten inte var närvarande och som fokuserade på den närståendes situation. För vissa var
det viktigt att samtalet hölls i Sjukvårdsteamets lokaler. Det positiva med detta var
möjligheten till större avskildhet, att få se Sjukvårdsteamets lokaler samt möjligheten till
rundvandring på de palliativa avdelningarna. Den största svårigheten i projektet var att
genomföra samtalet snabbt efter anslutningen till Sjukvårdsteamet. Detta berodde framför allt
på tidsbrist hos personalen men även närstående kunde ha svårt att hitta luckor i sina
scheman, framför allt för närstående som arbetade.
Slutsats
Att rutinmässigt ha ett enskilt (där patienten inte är med) strukturerat samtal med närstående
för att kartlägga deras situation, deras sociala nätverk, samtala om hur de ser på att vårda i
hemmet, samt att besvara frågor är ett sätt att tidigt ge och få information. Ett enskilt
närståendesamtal innebär en möjlighet att stödja både patienten och de närstående vid vård i
hemmet och därmed förebygga att problem uppstår. Att samtalen hade en gemensam struktur
gjorde att bedömningen av den närståendes situation underlättades. Den gemensamma
strukturen hindrade dock inte individualisering av samtalen utifrån den enskildes behov.
Slutsatsen av utvärderingen är att alla närstående bör få ett erbjudande om ett samtal eftersom
det fyller en viktig funktion även om samtalet kommer betydligt senare än den stipulerade
första till andra veckan efter anslutning.
Utvecklingsstörning
Vanvård i social barnavård, slutrapport
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.
When resources get sparse: A longitudinal, qualitative study of emotions, disabilities coping and resource-creation when parenting a young child with severe
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.
Who are the resilient children in conditions of military violence? Family- and child-related factors in a Palestinian community sample
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.
World trade center tragedy: Concomitant healing in traumatic grief through art therapy with children
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.
Vändpunkten Kristianstad – en stödgruppsverksamhet
Examensarbete våren 2011, socionomprogrammet
Young people living with parental bereavement: insights from an ethnographic study of a UK childhood bereavement service
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.
Äldre och personer med funktionsnedsättning – regiform m.m. och vissa insatser år 2010. Kommunala insatser enligt socialtjänstlagen
Insatser för barn och unga
Lag om rätt till ledighet av trängande familjeskäl
En arbetstagare har rätt till ledighet från sin anställning av trängande familjeskäl som har samband med sjukdom eller olycksfall och som gör arbetstagarens omedelbara närvaro absolut nödvändig
The Behavior Management Flow Chart: a component analysis of behavior management strategies
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.
Young carers and their Families
TONY WATERSTON, Consultant Paediatrician (Community Child Health)
Young Carers and their Families. By Becker S, Aldridge J, Dearden C. (Pp 144; paperback £14.99.) Blackwell Science, 1998. ISBN 0 632 04966 9 .
A day in the life of a child caring for a parent with multiple sclerosis.
Children caring for their parents or other children in the family are familiar to those who have worked in the third world but even with the UK's welfare service and safety net there are between 15 and 40 000 child carers nationwide. Oddly, just before starting to read this book I attended a meeting at a local school where we have begun a system of multiagency review of pupils not in school; the first young person discussed was caring for a parent and grandparent. We need to be more aware of this problem—hence this academic overview is welcomed.
Written by a trio of sociologists the book comes from a community and family based perspective but there is much of value to paediatricians. The authors first describe three perspectives on child carers: the impact of disability on the family, which is mainly medical; the children's rights angle; and the view of the disability rights movement. The first is viewed rather negatively as being narrow, but to me portrays the emotional and educational impact on the child of being a carer: "Every child needs to grow up in a stable environment characterised by consistent relationships. Many children are instead subjected to unending crises stemming from a parent's illness and repeated hospitalisation which provoke chronic uncertainty and unresolved grief that can be more stressful to a child than the loss of a parent through divorce or death." Thus the role of carer can restrict the child's education, can create physical burdens that their bodies are unprepared for, and confront them with a picture of suffering that has long term harm.
The children as carers literature tells why children take on care giving roles: a major factor is lone parenthood, another is reluctance of their father to take on caring activity; sadly the failure of services to recognise the needs of children and indeed sometimes to withdraw their provision is a notable factor. Inevitably, poverty is an ever present contributor. We learn of the involvement of young carers in intimate tasks; one girl cared for her father from the age of 9 following a stroke: "I did stop showering him at about 14 or 15, but recently that's started again. I didn't like showering him any more. You know, I thought 'I want my privacy, I'm sure he wants his', and I'm sure he doesn't like me having to shower him and I certainly don't like doing it. I suppose it was embarrassment. You know—it takes up so much time, it takes about an hour from start to finish, you know, get him in the shower and get him out and dressed."
Children carers have little power or status and families assume that what has begun voluntarily will become embedded in their habits, even though the young person would rather relinquish the role.
School attendance and performance is poor among young care givers; one study found that one in four were missing school. It is a poor reflection on school health services that support has not been provided to help these children back into school.
I found that the authors take a long time to make a few simple points. Having learned that caring is common and not beneficial for children, I wanted to know what I should do but there are no clear messages. The UN Convention on the Rights of the Child should underpin policy, but its impact in the UK has been limited. Only 11 of 71 local authorities defined these children as in need under the Children's Act. The Carers Act 1996 ensures that children may request to have their needs assessed but in a typical British Catch 22, the Act does not oblige departments to provide any services.
A useful type of support are the Young Carers' Projects with now over 100 in the UK. These raise awareness, develop supportive services, act on behalf of young carers to ensure that they receive appropriate benefits, and arrange leisure activities.
The authors identify the need to inform young carers on medical conditions, pointing out that this is woefully inadequate and that many children know so little about their parents' medical condition that they had invented their own version of diagnosis, prognosis, and consequences.
It saddened me that in the section on the role of professionals in identifying and assisting young carers, there is no mention of paediatricians. Is this because they are seen as purely medical, or because they have little contact with young carers? I suspect that it is the former, and that we need to be more outspoken about our wish to work across disciplines on behalf of children's health. We also need to look out for child carers in the families whom we see.
What I searched for was a child or young person's perspective, to try and understand some of the positive aspects of caring. I found little, perhaps because little has been done. Usually children have pretty good answers to difficult questions. Searching hard, I found a reference to a national survey of young people in which they thought that children of 10 should make their own bed and help with the washing up, children of 14 could take a part time job, young people at 16 could baby sit a child of 5, and 18 year olds could marry and vote. Caring for a parent was not mentioned.
So what might paediatricians take away from this book? First, an understanding that children who are carers are around and are being harmed; second, that they are often invisible to the agencies who should be helping; and third, that we have a role in highlighting this type of exploitation, as well as looking out for young carers among our patients. We would do well to network with the agencies locally who have young carers' projects. Only when I was writing this did I discover who they are in my district.
”Alla behöver ju bra habilitering …” småbarnsföräldrars uppfattningar av stöd från habiliteringen
Denna studie ingår som en del i ett större forskningsprojekt som bedrivs vid institutionen för Samhälls- och Beteendevetenskap vid Mälardalens högskola. Projektet syftar till att öka kunskapen om familjers samarbete med habiliteringsverksamhet. Projektledare är docent Eva Björck-Åkesson. I denna studie har fokus riktats mot föräldrar till barn med funktionshinder. Syftet har varit att belysa uppfattningarna ur deras eget perspektiv, men ambitionen har också omfattat ett vidare perspektiv, att beskriva föräld-rarnas önskemål om hur de vill bli bemötta och hur de vill att stödet ska utformas. Syftet kan kortfattat beskrivas i följande fråga: Hur uppfattar föräldrar som har små barn med funktionshinder det stöd de får från habiliteringen och hur vill de att stödet ska utformas i framtiden?Studien har en explorativ, hermeneutisk ansats och har sin utgångspunkt i ett föräldraperspektiv. De teoretiska utgångspunkterna är utifrån ett utvecklingsekologiskt synsätt och i empowermentteori. Resultaten har speglats mot tidigare studier inom området avseende familje-/närmiljöorienterat arbetssätt inom habilitering/intervention och inom området "Early Intervention". Vid genomförandet av studien prövades också möjligheten att kombinera en hermeneutisk ansats med fenomenografisk metod. Denna kombination har visat sig ge en användbar praktisk vägledning i tolknings- och analysarbetet.Studiens resultat visar att det finns en skillnad i hur föräldrarna uppfattar det stöd de får i dag och hur de önskar att stödet skulle ges. Uppfattningar av stöd från habiliteringen beskrivs i kategorier som omfattar organisatoriska faktorer, habiliteringsteamets arbetssätt och möten med enskilda professionella. Resultatet redovisas bl.a. i en tabell som beskriver en önskad och uppfattad situation, även föräldrarnas uppfattningar avseende andra formella/informella system beskrivs. Resultaten visar att intentionerna i bl.a. LSS (Lagen om särskilt stöd och service, SFS 1993:387) inte implementerats, brister i information och samordning av insatser tycks vara två av de bidragande orsakerna. Det finns således en skillnad i lagtext och verklighet. Rättigheter skall följas åt av resurser, vilket inte är fallet för de medverkande föräldrarna. Arbetssättet hos habiliteringen är inte familje/närmiljöorienterat och följaktligen riktas insatser mot barnet i första hand. Insatserna har inte baserats på behov i familjernas vardag i någon större utsträckning, utan föräldrarna har snarare blivit hänvisade till "det som finns", både när det gäller tillgänglig specialistkompetens och ett fast utbud av aktiviteter. Någon större grad av "em-powerment" har inte dessa föräldrar fått vara med om och de ser sig inte själva som samarbetspartners i habiliteringsprocessen.I mötet ställs speciella krav enligt föräldrarna, man behöver t.ex. tätare kontakter och en mer aktiv hjälp och önskar mötas av en större lyhördhet och flexibilitet. Brister i kommunikation hos både föräldrar och personal samt ett lågt visat intresse och initiativtagande hos personalen verkat ha varit ett hinder för detta. Resultaten pekar på ett behov av utbildning / fortbildning för både personal och föräldrar i gemensam problem-lösning. Det finns viktiga faktorer hos både personal och föräldrar som bidrar till ett gott samarbete, t.ex. en vilja att arbeta familjeorienterat, attityder, kommunikationsförmåga etc. Betydelsen av goda relationer, ett respektfullt bemötande och noggrann uppföljning är också viktigt för samarbetet. Habiliteringens mål bör vara klart formulerat och filosofin/värderingarna i verksamheten bör överensstämma med verkligheten. Det finns enligt dessa resultat en diskrepans mellan upplevt behov och tillgänglig service.Slutligen presenteras en modell som beskriver graden av empowerment som ett resultat av en ömsesidig påverkansprocess i mötet mellan föräldrar och habiliteringspersonal
Tillgängligheten i det politiska livet i kommuner och landsting. Myndigheten för handikapppolitisk samordning
To maintain control: negotiations in the everyday life of older people who can no longer manage on their own
The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.
To maintain control: negotiations in the everyday life of older people who can no longer manage on their own
The general aim of this thesis is to reach a more insightful understanding of how help is actually worked out in the everyday life of older people when they can no longer manage on their own. The overall research question is how individuals, representing different perspectives in the help arrangement process, think and act in order to organise needed help as well as how they may themselves apprehend the functions of the help. It is a qualitative study, containing four papers looking at this issue from different perspectives: the older persons themselves, their next of kin who provide help and the municipal care managers who make decisions on formal help. The empirical material consists of qualitative interviews and participant observations with care managers, qualitative interviews with older people applying for formal eldercare, follow-up interviews with some of them and qualitative interviews with next of kin who provide help. The analysis of the material adopts an empirically oriented approach, involving several steps from open to focused coding. Earlier research and theory guided the analysis. The results show that older people strive to maintain control over their everyday life (Paper I). When they can no longer manage unaided, they use various strategies to maintain control and the feeling of autonomy. Well-functioning formal and informal networks (Paper III) allow individuals to sustain autonomy and control in old age even when they have to depend on help from others. The care managers endeavour to make both ends meet in the decision process (Paper II). They develop various techniques and struck a balance between diverse demands and expectations. Helping an older relative is connected with a multiplicity of motives and experiences (Paper IV). The next of kin act both as bridges and buffers between their older relative and formal eldercare. This thesis emphasises the important functions of both formal and informal help to older people. To outline the working forms and methods of collaboration between older people and their informal and formal support networks is an important challenge that needs further attention.
To pay or not to pay: examining underlying principles in the debate on financial support for family caregivers
To pay or not to pay: examining underlying principles in the debate on financial support for family caregivers
In many countries one approach to supporting family-and-friend caregivers is direct financial or monetary support. Debates about the benefits and consequences of such policies pervade the literature. Building on the premise that values underlie public policy, the paper examines four policy paradoxes in the literature and uses selected examples from an international policy analysis to illustrate the underlying objectives and values upon which many of the policies were developed. These include the responsibility to care, economic or social objectives, gender equity, and the autonomy of care receivers. The authors conclude that policy makers need to be cautious about the unintended effects of financial support policy and develop a menu of policies and services to support caregivers. Future policy development in Canada must enable legitimate choice across the life course and ensure that neither the caregiver nor the care receiver will experience short- or long-term financial consequences of his or her choice.
Toward a Definition of Mixed Methods Research
The purpose of this article is to examine how the field of mixed methods currently is being defined. The authors asked many of the current leaders in mixed methods research how they define mixed methods research. The authors provide the leaders' definitions and discuss the content found as they searched for the criteria of demarcation. The authors provide a current answer to the question, What is mixed methods research? They also briefly summarize the recent history of mixed methods and list several issues that need additional work as the field continues to advance. They argue that mixed methods research is one of the three major "research paradigms" (quantitative research, qualitative research, and mixed methods research). The authors hope this article will contribute to the ongoing dialogue about how mixed methods research is defined and conceptualized by its practitioners.
Towards common principles of flexicurity: More and better jobs through flexibility and security
The Commission presents a set of guidelines as a framework for the Member States' flexicurity strategies.
The principles of flexicurity contribute to the modernisation of the European social models.
Concept of flexicurity
To be effective, labour market modernisation strategies must take into account the needs of employees and employers alike. The concept of flexicurity is therefore a global approach which favours:
•flexibility of employees, who must be able to adapt to labour market developments and achieve their professional transitions. Similarly, this approach must improve the flexibility of enterprises and work organisation in order to meet the needs of employers and to improve the balance between work and family life;
•security for employees, who must be able to progress in their professional careers, develop their skills and be supported by social security systems when they are not working.
Flexicurity strategies aim to reduce unemployment and poverty rates in the European Union (EU). In particular, they help to facilitate the integration of the most underprivileged groups on the labour market (such as the young, women, older workers and the long-term unemployed).
Treating paternal alcoholism with learning sobriety together: Effects on adolescents versus preadolescents
The purpose of this study was to determine whether Learning Sobriety Together, a treatment for substance abuse that combines behavioral couples therapy and individual counseling, had comparable secondary benefits on the internalizing and externalizing behaviors of adolescent versus preadolescent siblings living in homes with their alcoholic fathers (N = 131) and their non-substance-abusing mothers. During a 17-month assessment period, the association between parents' functioning (i.e., fathers' drinking as determined by percentage of days abstinent and parents' dyadic adjustment) and children's adjustment (as rated by mothers, fathers, and children's teachers) was stronger for preadolescents than for their adolescent siblings, particularly in terms of children's externalizing behaviors. Interventions that reduce paternal drinking and improve couple functioning may serve as an important preventative intervention for preadolescents in these homes, whereas adolescents may need more intensive interventions to address internalizing and externalizing symptoms.
Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial
Abstract
BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.
Two-year outcome of an intervention program for university students who have parents with alcohol problems: a randomized controlled trial
BACKGROUND:
Only a few intervention studies aiming to change high-risk drinking behavior have involved university students with heredity for alcohol problems. This study evaluated the effects after 2 years on drinking patterns and coping behavior of intervention programs for students with parents with alcohol problems.
METHOD:
In total, 82 university students (57 women and 25 men, average age 25 years) with at least 1 parent with alcohol problems were included in the study. The students were randomly assigned to 1 of the 3 programs: (i) alcohol intervention program, (ii) coping intervention program, or (iii) combination program. All the 3 intervention programs were manual based and individually implemented during 2 2-hour sessions, 4 weeks apart. Before the participants were randomly assigned, all were subjected to an individual baseline assessment. This assessment contained both a face-to-face interview and 6 self-completion questionnaires: the Alcohol Use Disorders Identification Test, estimated Blood Alcohol Concentration, Short Index of Problems, the Symptom Checklist-90, Coping with Parents' Abuse Questionnaire, and The Interview Schedule for Social Interaction (ISSI). Follow-up interviews were conducted after 1 and 2 years, respectively. The results after 1 year have previously been reported.
RESULTS:
All participants finished the baseline assessment, accepted and completed the intervention. Ninety-five percent of the students completed the 24-month follow-up assessment. Only the group receiving the combination program continued to improve their drinking pattern significantly (p < 0.05) from the 12-month follow-up to the 24-month follow-up. The improvements in this group were significantly better than in the other 2 groups. The group receiving only alcohol intervention remained at the level of improvement achieved at the 12-month follow-up. The improvements in coping behavior achieved at the 12-month follow-up remained at the 24-month follow-up for all the 3 groups, i.e., regardless of intervention program.
CONCLUSION:
Positive effects of alcohol intervention between 1 and 2 years were found only in the combined intervention group, contrary to the 1-year results with effects of alcohol intervention with or without a combination with coping intervention.
Unjustly neglected: Siblings of people with a schizophrenic psychosis
Objective: Siblings of individuals suffering from schizophrenia are an underrepresented group in research focussing on the needs of carets and relatives of psychiatric patients. The present study aims to investigate differences between siblings and parents as well as spouses, as regards help seeking, utilisation of an open group for relatives, their subjective burden and quality of life. Methods: 147 relatives of in-patients and patients attending a day hospital where assessed using the General Health Questionnaire (GHQ), the Family Problem Questionnaire (FPQ), the WHO Quality of Life-BREF (WHOQOL-BREF) and a questionnaire inquiring about the relatives' utilisation of various sources of information and help throughout the course of the illness. Results: Siblings reported less contact to the patients compared to the two other groups. However, their subjective burden was comparable to that Of Spouses, who were the group with the highest amount of contact. Siblings' quality of life showed by far less impairment than that of spouses and parents. They reported significantly less utilisation of any source of information and help and were far less likely to be invited to the group for relatives. Conclusions: Siblings of patients with schizophrenia are a particularly neglected group regarding support aimed at relatives. They are heavily distressed, yet there is little offer of professional support for them. It seems indicated to draw increased attention to this specific group of relatives.
Upplevelsen av sorg hos närstående till personer med demens : en litteraturstudie. [Elektronisk resurs].
Upplevelser hos äldre närstående i samband med partners dödsfall - en litteraturöversikt.
Using mixed methods to evaluate the use of a caregiver strain measure to assess outcomes of a caregiver support program for caregivers of older adults.
Using stroke to explore the Life Thread Model: An alternative approach to understanding rehabilitation following an acquired disability
The purpose of this paper is to introduce the Life Thread Model, which incorporates established psychological and social theory related to identity change following an acquired disability. It is supported by a growing body of empirical evidence and can be used to broaden our understanding of service provision in rehabilitation. We suggest that a limited appreciation of social and psychological processes underpinning rehabilitation has led to different agendas for patients and professionals, lack of recognition of power relationships, negative views of disability, and insufficient professional knowledge about the management of emotional responses. The Life Thread Model, based on narrative theory and focusing on interpersonal relationships, has been developed following ten years of empirical research. Using the model, the balance of power between professionals and patients can be recognized. We suggest that positive emotional responses can be supported through (a) endorsing a positive view of self, (b) 'being' with somebody as well as 'doing' things for them; and (c) seeing acquired disability as a time of transition rather than simply of loss. This model highlights the usually hidden social processes which underpin clinical practice in acquired disability. Recognition of the importance of discursive as well as physical strategies widens the possibilities for intervention and treatment.
Valuing the invaluable: a new look at the economic value of family caregiving.
When a school-age child's parent has cancer
Violence against women in intimate relationships: Explanations and suggestions for interventions as perceived by healthcare workers, local leaders, and trusted community members in a northern district of Vietnam
Abstract
AIM:
This study explored professionals' and trusted community inhabitants' explanations of the violence between intimate partners and their suggestions for preventive activities. It was performed in a rural district in northern Vietnam.
METHODS:
A total of 20 men and 20 women were strategically selected for focus-group discussions and the analyses followed the procedure for qualitative thematic content analysis.
RESULTS:
It was pointed out that violence against women was not discussed openly in the community and women subjected to violence kept silent and avoided seeking help in order not to reveal what was happening in the family. The informants perceived the violence as an interplay between individual and family-related factors and sociocultural norms and practices where Confucian ideology exerted a strong influence. When it came to prevention, there was a strong belief in educating the people and in enforcing policy and law.
CONCLUSIONS:
As described by the informants, traditional attitudes to gender roles and women's power disadvantage are found to be behind most of the explanations for intimate partner violence. Collaboration between sectors at local level, between the health sector and other bodies, and with community leaders as spokesmen would help to improve openness and reduce society's tolerance of violence against women. The mass media also have an important role to play.
Women's views of caring for family members
The purpose of this study was to describe the life situation of informal caregivers who regularly use respite services when caring for their older relative. The sample consisted of 17 wife and daughter caregivers who frequently relied on respite care to support coping at home. Data were analyzed by inductive content analysis. Spousal caregivers in a warm, loving relationship or who longed for their lost relationship with a husband experiencing a memory disorder did not identify themselves as informal caregivers, but principally as wives. Periods of respite invoked feelings of emptiness; on the other hand, they offered an opportunity for these caregivers to take care of their own health. The younger spouses also felt it was a relief to have time for their own interests. Caregivers who felt that being with the care recipient was an obligation described their relationship as mainly caregiving. In relationships focusing on organizing the daily routines, caregivers welcomed respite as a relief but experienced unexpected feelings of guilt. Those who felt imprisoned by the care recipient relied on respite to help them cope with a burdensome relationship, while waiting for their loved one's transfer into permanent institutional care. The results of the study challenge health care professionals to commit themselves to family-centered work, in which knowing the family's history and current life situation is key to providing high-quality services.
Women's views of caring for family members
Våld mot barn 2006-2007 – en nationell kartläggning
Våld mot personer med funktionshinder
Kunskapen om våld mot personer med funktionshinder i Sverige är i dag otillräcklig. Området är relativt outforskat och det saknas en samlad bild av våldet. Brå fick därför regeringens uppdrag att undersöka problemet.
Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson