Bibliotek

Sök aktuell litteratur inom anhörigområdet

Sökresultat

Din sökning på resulterade i 8019 träffar

Manual for the ASEBA Adult Forms and Profiles

Achenbach TM, Rescorla LA (2003)

Manual explains the development, standardization, applications, and profiles for the ASEBA adult forms. Also provides reliability and validity data, problem prevalence rates, scale scores, scoring instruments, and answers to common questions. 232 pages.

Manual for the Child Behavioral Checklist 4-18 and revised 1991 profile.

Achenbach TM (1991)

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

Measuring responsive style in parents who use AAC with their children: Development and evaluation of a new instrument.

Broberg, M., Ferm, U., & Thunberg, G. (2012)

The aim of this study was to develop and evaluate an instrument - the Responsive Augmentative and Alternative Communication Style (RAACS) scale Version 2 - to assess the communicative style of parents as they interact with their children using augmentative and alternative communication (AAC). This scale was used to analyze play interactions between 43 parents and 28 children with different diagnoses (including Down syndrome, autism, cerebral palsy, and intellectual disability), aged between 12 and 60 months. Parent-child interactions were observed both before and after parent participation in ComAlong, a training course on using responsive communication and AAC to support interaction with children. Based on an analysis of the results, Version 3 of the RAACS scale was developed and is recommended for future use. Analyses of Version 3 showed acceptable inter- and intra-coder reliability, and excellent internal consistency.

Online counselling: The motives and experiences of young people who choose the Internet instead of face to face or telephone counselling

King, R., Bambling, M., Lloyd, C., Gomurra, R., Smith, S., Reid, W., & Wegner, K. (2006)

This study used a Consensual Qualitative Research methodology to explore the motivations and experiences of young people who utilize the Internet for counselling over other counselling media. Semi-structured online group interviews (focus groups) were conducted with 39 participants from the Kids Help Line, a 24-hour national telephone and counselling service located in Australia. Analysis revealed five domains relevant to the adolescents' motives and experiences and the frequency of categories within and across cases were analyzed to generate and understand themes and patterns. Specific motivators and barriers are identified and discussed, as are implications for practice and continued research.

Online self-help tools for the relatives of persons with depression - a feasibility study

Stjernswärd S, Östman M, Löwgren J. (2012)

Background: The Internet's potential as health care tool should be explored. Aim: One objective was to determine the feasibility of constructing a digitally based tool through an iterative design process in cooperation with potential users. The tool's purpose is to alleviate hardships in daily life of relatives of persons with depression. An additional aim was to explore motivation and hindrances to using the tool as a basis for design decisions. Method: An iterative design approach, including data collection through focus groups and with paper and web-based prototypes, was used. Results: Cooperation with potential users, using an iterative design process, was valuable in developing the digitally based tool. Motivations (i.e. to create understanding and rehabilitate oneself) and hindrances (i.e. lack of time or energy) to using the tool were illuminated. Design decisions were based on consideration towards participants' privacy concerns, needs of support and the depression's influence on the relatives' daily life. Conclusion: Prototypes and cooperation with potential users were essential and valuable for the iterative development of the website.

Online self-help tools for the relatives of persons with depression - a feasibility study

Stjernswärd S, Östman M, Löwgren J. (2012)

Background: The Internet's potential as health care tool should be explored. Aim: One objective was to determine the feasibility of constructing a digitally based tool through an iterative design process in cooperation with potential users. The tool's purpose is to alleviate hardships in daily life of relatives of persons with depression. An additional aim was to explore motivation and hindrances to using the tool as a basis for design decisions. Method: An iterative design approach, including data collection through focus groups and with paper and web-based prototypes, was used. Results: Cooperation with potential users, using an iterative design process, was valuable in developing the digitally based tool. Motivations (i.e. to create understanding and rehabilitate oneself) and hindrances (i.e. lack of time or energy) to using the tool were illuminated. Design decisions were based on consideration towards participants' privacy concerns, needs of support and the depression's influence on the relatives' daily life. Conclusion: Prototypes and cooperation with potential users were essential and valuable for the iterative development of the website.

Operation slutstirrat

Anna Pella (2018)

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

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

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

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

Optimism, social support, and well-being in mothers of children with autism spectrum disorder

Ekas, N. V., D. M. Lickenbrock, et al. (2010)

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)

Ordinary families, special children

Seligman, Milton & Darling, Rosalyn Benjamin (2007)

This popular clinical reference and text provides a multisystems perspective on childhood disability and its effects on family life. The volume examines how child, family, ecological, and sociocultural variables intertwine to shape the ways families respond to disability, and how professionals can promote coping, adaptation, and empowerment. Accessible and engaging, the book integrates theory and research with vignettes and firsthand reflections from family members.

Organiserande av stöd och service till barn med funktionshinder. Om projektnät, språkliga förpackningar och institutionella paradoxer

Larsson, M. (2001)

Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.

Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.

Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.

Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.

Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.

Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".

De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.

I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".

I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.

För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman. (Less)

Organiserande av stöd och service till barn med funktionshinder. Om projektnät, språkliga förpackningar och institutionella paradoxer.

Larsson, M. (2001)

Avhandlingen är en studie av hur stöd och service organiseras kring fyra barn med funktionshinder och deras familjer. I denna service är normalt flera olika formella organisationer involverade, som barnhabilitering, förskola/skola/särskola, hjälpmedelscentral, assistentorganisationer, sjukvård m fl. Dessutom kan barnets och familjens situation vara komplicerad på många sätt. Själva funktionshindret kan vara komplext och förändras över tid. Familjens situation är också beroende av en mängd andra faktorer än själva funktionshindret.

Att organisera servicen innebär att konstruera insatser, att få dem att fungera, och att samordna med allt annat som sker. Både i litteraturen och i familjers berättelser beskrivs ofta svårigheter och brister i detta organiserande. Studien syftar därför till att undersöka hur organiserandet i praktiken går till, och vilka dess förutsättningar är.

Avhandlingen bygger på en undersökning av service och stöd kring fyra familjer med funktionshindrade barn. Barnens ålder varierade mellan 2 och 9 år, och de hade både fysiska och psykiska funktionshinder. Sammanlagt gjordes 83 intervjuer med involverad personal och föräldrar. Dessutom observerades 15 möten mellan personal och föräldrar, som i huvudsak fungerar som bakgrundsmaterial.

Själva organiserandet uppfattas i studien som ett begriplighetsskapande. Verkligheten ses som mångtydig, och genom att en gemensam förståelse skapas, ordnas och organiseras också handlingar. Servicen blir begriplig "som" just service på ett sätt som gör att den blir praktiskt möjlig att genomföra. Övriga involverade förstår vad som ska ske och hur de behöver bidra till det. Begriplighetsskapandet har vidare studerats som ett språkligt fenomen. Det är i språket som handlingar ges innebörder, och kan beskrivas på ett sätt så att man vet vad man kan förvänta sig framöver. Vidare är det genom språket som olika aktörer tar på sig ansvar för att utföra saker, och beskriva vad det är de tänker göra. Med hjälp av begreppet "språkliga förpackningar" undersöks hur ett gemensamt organiserande språk används. En språklig förpackning är en beskrivning av det man gör (eller tänker göra) som gör det begripligt för andra. Handlingen "förpackas" på ett sätt som gör den begriplig och rimlig.

Genom att undersöka hur de olika intervjupersonerna beskriver det de är engagerade i kring det enskilda barnet blir "projekt" synliga, som det sätt som insatser är ordnade. Inom ett projekt hänger insatser och handlingar samman, medan de mellan projekten är mer oberoende. Den övergripande strukturen på servicen är ett löst sammanhållet knippe av sådana projekt.

Organiserandet av verksamheten handlar också om hur praktiken begripliggörs som just insatser och service, och som något som bildar projekt. I en närgången analys av beskrivningarna i intervjuer och på möten har fyra aspekter av organiserandet kunnat särskiljas. För det första betecknas aktörernas aktiviteter på specifika sätt, och för det andra kontextualiseras beteckningarna på ett sätt som ger dem mening och innebörd. För det tredje konstrueras bilder av det funktionshindrade barnet, genom att vissa sidor av barnet fokuseras och lyfts fram. Bilderna av barnet är vävs samman med själva beskrivningen av insatserna, och fungerar som redskap för att förklara vad det är man gör, och motivera att man är engagerad i det. För det fjärde intar aktörerna egna positioner, genom de sätt de beskriver sin praktik och med hjälp av bilderna av barnet. Vanliga positioner är t ex för personalens del "professionell" och "kompetent", eller för föräldrarnas del "kompetent förälder".

De fyra aspekterna vävs samman i organiserandet och begripliggörandet av servicen. Det är genom en rimlig kombination av dem som en begriplig och trovärdig service kan etableras och upprätthållas.

I en vidare analys av organiserandets förutsättningar identifierades sex "institutionaliserade element", som fungerar som taget-för-givna utgångspunkter för servicen: familjecentrering, barnfokusering, utvecklingsorientering, expertrationalitet, användande av professionella diskurser, samt standardiserade former som "träning en gång i veckan". Dessa element är den grund på vilken servicen konstrueras och upprätthålls. Samtidigt finns det i den ordning som elementen utgör både motsättningar och paradoxer, tillsammans med vissa språkliga verktyg och strategier som de hanteras och "de-paradoxifieras" med. I studien diskuteras fyra paradoxer: fragmentering genom professionella diskurser, barnfokuseringens motsägelsefulla praktik, motsättning mellan expertrationalitet och familjecentrering, samt spänningen mellan institutionella projekt och lokal verklighet. Mot bakgrund av hur denna institutionalitet formar vilka projekt som är möjliga, och vilka positioner som aktörerna därmed erbjuds, beskrivs servicen slutligen som "projektnät".

I avhandlingen diskuteras resultaten både i relation till annan litteratur och till praktiken. En huvudpunkt är att organiserandet av servicen är något som ständigt pågår, som en aspekt av den konkreta servicen, snarare än något utöver denna. Alla aktörer är därmed konstant involverade i organiserandet, och frågan handlar mer om hur det görs, än om huruvida det behöver göras. En annan huvudpunkt är beskrivningen av två olika former av handlingslogik. Ofta beskrivs handling som något som syftar till ett visst mål, och den som handlar som någon som försöker göra detta så effektivt och bra som möjligt. I kontrast mot denna rationalitetslogik kan en lämplighetslogik beskrivas, där aktörer strävar efter att göra det som är lämpligt i en viss situation, givet hur man förstår situationen och sin egen position och roll i den. Denna lämplighetslogik stämmer väl med hur servicen beskrivits i studien. Med hjälp av denna logik kan svårigheten att genomföra vissa förändringar, t ex införande av individuella planer, förstås från ett nytt perspektiv. Det handlar då mindre om individuella attityder eller individuell kompetens, än om hur servicen i grunden är organiserad, och hur dessa förutsättningar kan hanteras i praktiken.

För det praktiska organiserandet diskuteras möjligheten att ta tillvara de resurser som finns i punkter där olika aspekter av servicen knyts samman. Det handlar om möten mellan personal och föräldrar, assistenter som är involverade i huvuddelen av servicen, samt kring vissa tekniska hjälpmedel. Möjligheterna att utveckla ett flexibelt organiserande är vidare beroende av aktörernas förmåga att aktivt reflektera och pröva alternativa perspektiv. Att utveckla det praktiska organiserande innebär då att odla denna reflektionsförmåga, bland annat för att finna nya sätt att ta tillvara de resurser som finns där servicen knyts samman.

Medication compliance in older individuals with depression: gaining the views of family carers

Boyle, E., & Chambers, M. (2000)

Documented evidence indicates that medication non-compliance for the older person is a common and poorly understood problem. This paper reports on a pilot study, which used a focus group interview to explore carers' attitudes, experiences and perceptions regarding medication compliance for their older depressed relative. It aimed to understand the problems and challenges encountered by carers in respect of their relative being non-compliant, and provide material to develop a comprehensive educational and support package to promote antidepressant compliance. A convenience sample of seven carers participated in the focus group and a qualitative analysis of the interview identified a number of key issues. Carers had little knowledge of depression, they were not well informed regarding antidepressant medication and they took an active role to ensure compliance. The focus group highlighted the need for health care professionals to promote and encourage carers to be part of the older individuals treatment programme and provide concise and unambiguous educational information in relation to antidepressants and the importance of compliance.

Medicinsk omvårdnad vid svåra flerfunktionshinder : handbok

Ölund, Ann-Kristin (2012)

Att leva med stora funktionsnedsättningar innebär att vara beroende av god medicinsk omvårdnad. Den här handboken ger kunskap om varför funktionshindren uppstår, hur det påverkar kroppen och hur den praktiska omvårdnaden i vardagen kan utföras på bästa sätt

Medicinsk omvårdnad vid svåra flerfunktionshinder. Handbok.

Ölund A-K. (2012)

Det här är en handbok som beskriver den medicinska omvårdnaden om personer med svåra flerfunktionshinder. Den tar upp symtom på olika problem, vilka behandlingsalternativ som finns och hur den praktiska omvårdnaden går till.

Boken riktar sig till alla som möter personer med flerfunktionshinder - anhöriga, assistenter, vårdpersonal - men också till habiliteringens personal. Den förmedlar fakta och kunskap på ett sätt som både går på djupet och är lättillgängligt.

Boken är tydligt uppdelad på olika kapitel som sömn, smärta och epilepsi, och kan därför även användas som uppslagsbok. Längst bak finns en omfattande lista med referenser och tips på vidare läsning.

Författare är Ann-Kristin Ölund, habiliteringsläkare och barnneruolog. Hon har över 20 års erfarenhet av praktiskt arbete med barn med flerfunktionshinder vid habiliteringarna i Uppsala och i Norrbotten. Boken är skriven med värme och en önskan om att personer med flerfunktionshinder ska kunna utvecklas efter sina unika förutsättningar.

Röster från läsare
"Denna bok fungerar utmärkt som uppslagsbok då den är indelad i tydliga kapitel utifrån möjliga problemområden, t.ex. spasticitet, smärta och epilepsi. Den är skriven på ett enkelt och lättförståeligt sätt med flera förklarande bilder samt tips- och faktarutor. Detta gör att den lämpar sig väl för närstående så väl som vårdpersonal. Ann-Kristin Ölunds mångåriga erfarenhet som läkare med praktiskt arbete med habilitering av personer med flerfunktionshinder gör att bokens innehåll känns kärnfullt och relevant."

Meeting the needs of parentally bereaved children: a framework for child-centered parenting

Saldinger, A., Porterfield, K., & Cain, A.C. (2004)

Abstract
This article describes the development and deployment of a framework for measuring parenting capacities in the context of bereavement. Grounded theoretical analysis of interviews with a community sample of 41 bereaved spouses with school-aged children elicited a set of nine bereavement-specific parenting tasks. A corollary coding system (covering all nine parenting tasks) was created to transform interview materials into quantitative data, thus permitting systematic empirical investigation of the parenting capacities of bereaved spouses. Parenting behaviors were coded on a 5-point scale ranging from least child-centered to most child-centered. Sex of surviving parent and circumstances of death proved to be significant mediating variables: mothers were more child-centered than fathers, and parents surviving sudden deaths more child-centered than those surviving anticipated deaths. Lengthy illness was associated with less child-centered parenting. The more child-centered the parenting, the less symptomatic the child as measured by parent report (Child Behavior Checklist) and child self-report (Children's Depression Inventory, Revised Child Manifest Anxiety Scale). Child-centered parenting was associated with more positive and fewer negative perceptions of the surviving parent by the child as measured by the Parent Perception Inventory. Implications of findings are discussed.

Men and older persons also care, but how much? Assessing amounts of caregiving in Spain and Sweden

Sundström Gerdt, Jegermalm Magnus, Abellán Antonio, Ayala Alba (2018)

Abstract [en]

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

Men do care! A gender-aware and masculinity-informed contribution to caregiving scholarship.

Wallroth, V. (2016)

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

Men’s violence against women: a challenge in antenatal care

Stenson, K. (2004)

Men's violence against women is a universal issue affecting health, human rights and gender-equality. In pregnancy, violence is a risk for both the mother and her unborn child.The overall aims were: to determine the prevalence of such violence in a Swedish pregnant population, to investigate pregnant women's attitudes to questioning about exposure to violence, and to evaluate experience gained by antenatal care midwives having routinely questioned pregnant women regarding violence.All women registered for antenatal care in Uppsala, Sweden, during 6 months were assessed regarding acts of violence. The Abuse Assessment Screen (AAS) was used twice during pregnancy and again after delivery when the women were asked an open-ended written question regarding attitudes to questioning about violence. Midwives' experiences regarding routine assessment were evaluated in focus group discussions.The AAS questions were answered by 93% (1,038) of those eligible. Physical abuse by a partner or relative during or shortly after pregnancy was reported by 1.3%, and by 2.8% when the year preceding pregnancy was included. Lifetime sexual abuse was reported by 8.1%. Repeated questioning increased the abuse detection rate. Abused women reported more previous ill-health, and women physically abused during pregnancy more pregnancy terminations than did non-abused women. Abuse assessment was found entirely acceptable by 80%, both acceptable and unacceptable/disagreeable by 5% and solely unacceptable/ disagreeable by 3%, while 12% were neural. Abused and non-abused women did not differ regarding disinclination to answer the abuse questions. According to the midwives the delicacy of the subject and the male partners' presence were the most prominent remaining obstacles to routine determination of violence. Routines are required to make questioning about violence an integral part of antenatal care. This would necessitate a private appointment for the woman, knowledge among care providers about the nature of men's violence, and awareness of referral options.

Me-ness and we-ness in a modified everyday life close to death at home [Elektronisk resurs].

Carlander, I. (2011)

The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person's need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers' self-image were connected to intimacy, decreasing personal space and experiences such as "forbidden thoughts". The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

Mental disorders and cause-specific mortality

Joukamaa, M., Heliovaara, M., Knekt, P., Aromaa, A., Raitasalo, R., & Lehtinen, V. (2001)

Background The impact of clinically diagnosed mental disorders on mortality in the general population has not been established.

Aims To examine mental disorders for their prediction of cause-specific mortality.

Method Mental disorders were determined using the 36-item version of the General Health Questionnaire and the Present State Examination in a nationally representative sample of 8000 adult Finns.

Results During the 17-year follow-up period 1597 deaths occurred. The presence of a mental disorder detected at baseline was associated with an elevated mortality rate. The relative risk in men was 1.6(95% confidence interval 1.3-1.8) and in women, 1.4 (95% Cl 1.2-1.6). In men and women with schizophrenia the relative risks of death during the follow-up period were 3.3 (95% Cl 2.3-4.9) and 2.3 (95% Cl 1.3-3.8) respectively, compared with the rest of the sample. In both men and women with schizophrenia the risk of dying of respiratory disease was increased, but the risk of dying of cardiovascular disease was increased only in men with neurotic depression.

Conclusions Schizophrenia and depression are associated with an elevated risk of natural and unnatural deaths.

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

Parent training plus contingency management for substance abusing families: A Complier Average Causal Effects (CACE) analysis

Stanger C, Ryan SR, Fu H, Budney AJ. (2011)

BACKGROUND:
Children of substance abusers are at risk for behavioral/emotional problems. To improve outcomes for these children, we developed and tested an intervention that integrated a novel contingency management (CM) program designed to enhance compliance with an empirically-validated parent training curriculum. CM provided incentives for daily monitoring of parenting and child behavior, completion of home practice assignments, and session attendance.
METHODS:
Forty-seven mothers with substance abuse or dependence were randomly assigned to parent training+incentives (PTI) or parent training without incentives (PT). Children were 55% male, ages 2-7 years.
RESULTS:
Homework completion and session attendance did not differ between PTI and PT mothers, but PTI mothers had higher rates of daily monitoring. PTI children had larger reductions in child externalizing problems in all models. Complier Average Causal Effects (CACE) analyses showed additional significant effects of PTI on child internalizing problems, parent problems and parenting. These effects were not significant in standard Intent-to-Treat analyses.
CONCLUSION:
Results suggest our incentive program may offer a method for boosting outcomes.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Parent training with behavioral couples therapy for fathers' alcohol abuse: effects on substance use, parental relationship, parenting, and CPS involvement.

Lam WKK, Fals-Stewart W, Kelley ML. (2009)

This pilot study examined effects of Parent Skills with Behavioral Couples Therapy (PSBCT) on substance use, parenting, and relationship conflict among fathers with alcohol use disorders. Male participants (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child (8 to 12 years) were randomly assigned to (a) PSBCT; (b) Behavioral Couples Therapy (BCT); or (c) Individual-Based Treatment (IBT). Children were not actively involved in treatment. Parents completed measures of substance use, couples' dyadic adjustment, partner violence, parenting, and Child Protection Services (CPS) involvement at pretreatment, posttreatment, 6- and 12-month follow-up. PSBCT was comparable to BCT on substance use, dyadic adjustment, and partner violence; both groups showed clinically meaningful effects over IBT. Compared to BCT, PSBCT resulted in larger effect sizes on parenting and CPS involvement throughout follow-up. PSBCT for fathers may enhance parenting couple- or individual-based treatment, and warrant examination in a larger, randomized efficacy trial.

Receipt of Formal and Informal Help with Specific Care Tasks among Older People Living in their Own Home. National Trends over Two Decades

Dahlberg Lena, Berndt Hanna, Lennartsson Carin, Schön Pär (2018)

bstract [en]

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

Reciprocity and Social Capital in Sibling Relationships of People With Disabilities

Kramer J, Hall A, Heller T. (2013)

Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the life span. For siblings and people with intellectual and developmental disabilities (IDD), these connections take on an increased significance as their families age and parents can no longer provide care. This article presents findings from a qualitative study that addresses the question, "How do siblings support each other after parents no longer can provide care to the person with IDD?" Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice are discussed.

Reciprocity in relationships and support between grandparents and grandchildren: An Icelandic example

Sigurdadottir, S. H. and S. Juliusdottir (2013)

This study explores and discusses the relationships between grandchildren and grandparents with an emphasis on the reciprocal, practical, emotional, and financial support that is provided between generations. Two independent surveys were conducted in Iceland, one of grandparents aged 65 years and older (n = 206) and one of grandchildren among college students (n = 648). The questions used were the same. The results indicated that there is a certain consistency in the pattern of views of the younger toward the older generation and the other way around. These findings are discussed in relation to family development and the value of intergenerational relationships and support.

Recognition and justice: outline of a plural theory of justice

Honneth, Axel (2004)

In this article, Axel Honneth outlines a plural theory of justice. In developing his argument he takes his departure not in the classic elimination of 'inequality', but in the avoidance of 'humiliation' or 'disrespect'. He is convinced that an appropriate point of departure for a recognition-theoretical conception of justice must show that the experience of social injustice is always measured in terms of the withholding of some recognition held to be legitimate. Throughout the article, Honneth makes strong reservations about Nancy Fraser's approach, where 'recognition' and 'redistribution' are separated into two conceptual totalities with the single goal of 'participatory equality'. On the contrary, he suggests having a more elaborate concept of identity formation, so that participating in the public realm means participating without shame, capable of unfurling his or her own personality's potential in an unforced manner and of thus developing a personal identity. From this standpoint Honneth points to three differentiated spheres of recognition that must be obtained if the individual is to obtain a personal identity, namely love, equal treatment in law and social esteem

Recommended communication-based interventions for individuals with severe intellectual disabilities

Ogletree BT, Bruce SM, Finch A, Fahey R, McLean L. (2011)

Providing effective interventions for individuals with severe intellectual disabilities (ID) continues to challenge educators, speech-language pathologists, and other allied health professionals.This article reviews recommended intervention practices that have emerged over the past 30 years and illustrates their use through an evidenced-based case example. The article concludes with remarks specific to the case and a charge to those involved with communication interventions for this population. © Hammill Institute on Disabilities 2011.

Parental PTSD, adverse parenting and child attachment in a refugee sample

Van Ee, E., Kleber, R. J., Jongmans, M. J., Mooren, T. T., & Out, D. (2016)

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.

Parental Reports of Spoken Language Skills in Children With Down Syndrome

Berglund, E., Eriksson, M. & Johansson, I. (2001)

Spoken language in children with Down syndrome and in children in a normative group was compared. Growth trends, individual variation, sex differences, and performance on vocabulary, pragmatic, and grammar scales as well as MaxLU (maximum length of utterance) were explored. Subjects were 330 children withDown syndrome (age range: 1–5 years) and 336 children in a normative group (1;4–2;4 years;months). The Swedish Early Communicative Development Inventory-words and sentences (SECDI-w&s) was employed. Performance of children with Down syndrome at ages 3;0 and 4;0 was comparable with that ofchildren in the normative group at ages 1;4 and 1;8 respectively. In comparison with children in the normative group of similar vocabulary size, children with Down syndrome lagged slightly on pragmatic and grammar scales. The early development proceeded in most cases with exponential or logistic growth. This stresses the great potential of early intervention.

Parental stress and child behavioral outcomes following substance abuse residential treatment. Follow-up at 6 and 12 months.

Killeen T, Brady KT. (2000)

Residential treatment programs specifically designed for alcohol/drug-addicted women and their children have become a popular treatment modality across the United States. Outcome evaluation of these programs are beginning to show promising results. In this article, outcome data from a study of a residential substance abuse treatment program for women and young children in rural South Carolina will be presented. Data from 35 women and 23 children in the area of addiction severity, parenting and child emotional and behavioral development at 6 and 12 months following discharge from a substance abuse residential treatment program is examined. Results showed that women who completed treatment had better scores on addiction severity and parental stress, and their children had improved behavioral and emotional functioning at 6 and 12 months after discharge from the program. These results suggest that residential treatment has benefits for mothers and their children. This data adds to the growing body of evidence supporting intensive and inclusive care for certain groups of individuals with substance use disorders during critical periods.

Parental styles in the intergenerational transmission of trauma stemming from the Khmer Rouge regime in Cambodia

Field, N. P., Muong, S., & Sochanvimean, V. (2013)

The impact of parental styles in intergenerational transmission of trauma among mothers who survived the Khmer Rouge regime in Cambodia, in power from 1975 to 1979, and their teenaged children was examined in 2 studies. In Study 1, 46 Cambodian female high school students and their mothers were recruited. Each daughter completed anxiety and depression measures as well as assessment of her mother's role-reversing, overprotective, and rejecting parental styles, whereas the mothers completed measures of their trauma exposure during the Khmer Rouge regime and PTSD symptoms. In support of trauma transmission, the mother's PTSD symptoms were predictive of her daughter's anxiety. Moreover, the mother's role-reversing parental style was shown to mediate the relationship between her own and her daughter's symptoms. In support of their generalizability, the results were replicated in Study 2 in a Cambodian-American refugee sample comparing 15 mental health treatment-seeking mothers and their teenaged children with 17 nontreatment-seeking mother–child pairs. The implications of the findings within the larger literature on intergenerational trauma transmission stemming from genocide are discussed.

Parentally bereaved children and posttraumatic growth: insights from an etnographic study of a UK childhood bereavement service

Brewer, J., & Sparkes, A. (2011)

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

Parent-child interaction: A comparison of parents' perceptions in three groups

Wilder J, Axelsson C, Granlund M. (2004)

Purpose: To evaluate a children's version of the ICF that takes children's dependency on their parents and a developmental perspective into consideration. Method: This study explored how 91 parents perceived child participation in terms of parent/child immediate interaction, and desires for ideal interaction in relation to body impairments and activity limitations. Similarities and differences were investigated in three matched groups of families through questionnaires. Group 1 consisted of parents of children with profound multiple disabilities, Group 2 was developmentally matched and Group 3 was matched according to chronological age. Results: The children with profound multiple disabilities expressed the same amount of emotions as the other groups, but they had difficulties expressing more complex emotions. Parents perceived the children's behaviour styles in a similar way in the three groups. There were significant differences in how the immediate interaction was perceived with parents to children of Group 1 perceiving difficulties in maintaining joint attention and directing attention. Conclusions: The results suggest that parental perceptions of the interaction with their children with profound multiple disabilities in the immediate setting to a certain extent are related to the body impairments of the children but not strongly to communicative skills /activity limitations. Thus, to focus communication intervention on participation and interaction, assessment and questions to parents have to be focused directly on these issues. © 2004 Taylor & Francis Ltd.

Parenting in Recovery Program: Participant Responses and Case Examples.

Thompson S, Roper C, Peveto L. (2013)

Approximately 80% of children served by child welfare agencies have parents who abuse or are dependent on alcohol or illicit drugs. Despite the devastating effects on children from living in substance abusing families, child protective service practitioners have limited options available to assist these families. The Parenting in Recovery program was created to address the needs of substance-abusing mothers involved in child welfare. This manuscript describes this program and perceptions of participants concerning its effectiveness.

Reducing depression in stroke survivors and their informal caregivers: A randomized clinical trial of a Web-based intervention

Smith GC, Egbert N, Dellman-Jenkins M, Nanna K, Palmieri PA. (2012)

Purpose/Objectives: To develop and test the efficacy of a Web-based intervention for alleviating depression in male stroke survivors (SSs) and their spousal caregivers (CGs) that blends both peer and professional support. Design and Methods: The research consisted of an intervention protocol evaluated by a focus group of rehabilitation professionals, a "think aloud" session conducted with female stroke CGs, and a usability test of the intervention's online features with 7 female stroke CGs. Efficacy of the final protocol was tested in a 2-group randomized clinical trial with a sample of 32 CG–SS dyads. The CGs in the intervention condition received an online group intervention. Intervention components were based on the Stress Process Model. Those CGs in a control condition received minimal support with individualized access to relevant online information. Measures of depression, as well as the secondary outcomes of mastery, self-esteem, and social support, were obtained from SSs and CGs at pretest, posttest, and 1-month later. Results: At posttest and 1 month later, CGs in the intervention condition reported significantly lower depression than CGs in the control condition with baseline depression controlled. There was no significant effect on depression among SSs. Although no significant treatment effects for either SSs or CGs were found on the secondary outcomes, posttreatment changes on some constructs were significantly correlated with change in depression. Conclusions/Implications: CGs benefit from Web-based programs that help them better understand both their emotional needs and those of the SS. (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Reducing Parental Risk Factors for Children's Substance Misuse: Preliminary Outcomes with Opiate-Addicted Parents.

Catalano RF, Haggerty KP, Gainey RR, Hoppe MJ. (1997)

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.

Reducing Parental Risk Factors for Children's Substance Misuse: Preliminary Outcomes with Opiate-Addicted Parents.

Catalano RF, Haggerty KP, Gainey RR, Hoppe MJ. (1997)

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.

Reflections A Story of Hope, Healing, Facing Fears, and Finding Purpose

Hobbs Brian, Hobbs Fia (2020)

Gives hope and inspiration to live a full life despite the adversity of cancer Teaches readers how to overcome fears Shows the importance of finding one's passion and purpose Saying goodbye and putting things in order before dying Coming to terms with mortality Finding out what truly matters in life

Regular article: Reducing potential for child abuse among methadone-maintained parents: Results from a randomized controlled trial.

Dawe S, Harnett P. (2007)

High rates of child abuse and neglect occur in many families in which either or both parents abuse illicit drugs. This study reports on the results of a randomized controlled trial with families having a parent on methadone maintenance (N = 64), in which an intensive, home-based intervention, the Parents Under Pressure (PUP) program, was compared to standard care. A second brief intervention control group of families received a two-session parenting education intervention. The PUP intervention draws from the ecological model of child development by targeting multiple domains of family functioning including the psychological functioning of individuals in the family, parent–child relationships, and social contextual factors. Mindfulness skills were included to address parental affect regulation, a significant problem for this group of parents. At 3- and 6-month follow-up, PUP families showed significant reductions in problems across multiple domains of family functioning, including a reduction in child abuse potential, rigid parenting attitudes, and child behavior problems. Families in the brief intervention group showed a modest reduction in child abuse potential but no other changes in family function. There were no improvements found in the standard care group and some significant worsening was observed. Results are discussed in terms of their implications for improved treatment.

Participants' experiences of a support group intervention for family members during ongoing palliative home care

Milberg A, Rydstrand K, Helander L, Friedrichsen M. (2005)

The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.

Relational Psychotherapy Mothers' Group: A randomized clinical trial for substance abusing mothers

Luthar SS, Suchman NE, Altomare M. (2007)

The purpose of this study was to ascertain the effectiveness of the Relational Psychotherapy Mothers' Group (RPMG), a supportive parenting group intervention for substance abusing women. Sixty mothers receiving RPMG were compared to 67 women receiving recovery training (RT); both treatments supplemented treatment in the methadone clinics. At the end of the 6-month treatment period, RPMG mothers showed marginally significant improvement on child maltreatment (self-reported) and cocaine abuse based on urinalyses when compared with RT mothers; notably, children of RPMG mothers reported significantly greater improvement in emotional adjustment and depression than children of RT mothers. At 6 months follow-up, however, treatment gains were no longer apparent. Overall, the findings suggest that whereas supportive parenting interventions for substance abusing women do have some preventive potential, abrupt cessation of the therapeutic program could have deleterious consequences.

Thousands of American children are at risk for negative outcomes because of maternal substance abuse. Estimates are that as many as four million American women regularly use illicit drugs (SAMHSA, Office of Applied Studies, National Survey on Drug Use and Health, 2002/2003); about 80% of these women are likely to be mothers of at least one child (National Center on Addiction and Substance Abuse, 1996). Drug abusing mothers show elevated levels of psychiatric disturbance—particularly depression and anxiety—as well as significant problems with child rearing (Beckwith, Rozga, & Sigman, 2002; Luthar, Cushing, Merikangas, & Rounsaville, 1998; Najavits, Weiss, & Shaw, 1997; Singer et al., 1997). It is not surprising that their children also display several difficulties, with as many as 65% manifesting a psychiatric disorder by the teen years (Luthar et al., 1998).

Although their multiple vulnerabilities indicate that addicted mothers need multifaceted therapeutic interventions, drug treatment programs traditionally have entailed scant attention to their personal and parenting needs (Luthar & Suchman, 2000a). These programs were originally developed for men and then used with women as well, with little consideration of the unique challenges and needs of the latter, particular in terms of their roles as mothers (cf. Hogan, 1998; Millar & Stermac, 2000; Westermeyer & Boedicker, 2000). In the last 2 decades, however, there have been several efforts to develop and test such multi-pronged programs (Camp & Finkelstein, 1997; Catalano, Gainey, Fleming, Haggerty, & Johnson, 1999). In this paper, we focus on one such intervention, which showed promise in early pilot testing (Luthar & Suchman, 2000a), the Relational Psychotherapy Mothers' Group (RPMG), with the goal of assessing effectiveness relative to alternative forms of treatment.

Developed for heroin-addicted mothers with children up to 16 years of age, RPMG is a supportive psychotherapy aimed at facilitating optimal parenting among at-risk mothers, and it is offered over 24 weekly group sessions that supplement standard methadone treatment. Conceptually, the treatment was developed within the scaffolding of the literature on risk and resilience, with (a) consideration of processes operating at multiple levels, related to the individual, family, and community, and (b) a focus on both positive and negative forces among at-risk groups (Luthar & Cicchetti, 2000).

At the individual level, the RPMG intervention is grounded in the view that attention to addicted mothers' personal distress levels is critical to improve their parenting behaviors. At the same time, the treatment entails deliberate attempts to harness mothers' tendencies toward guilt (regret at their past "errors") as catalysts for change toward optimal parenting. Thus, the first half of the 24 sessions in this treatment are directly focused on the women's own functioning, addressing topics such as coping with anger, depression, and the constructive use of guilt.

Vulnerability factors at the familial level span multiple forms of dysfunctional parenting that many of these women experienced as children, ranging from inadequate nurturance to physical or sexual abuse (El-Bassel, Gilbert, Schilling, & Wada, 2000; Harmer, Sanderson, & Mertin, 1999; Hogan, 1998; Najavits et al., 1997). Obviously, these experiences pose risks for their own parenting. Salient among the protective forces conversely, is concern about the well-being of their children along with both the desire and potential to benefit from supportive parenting interventions (Hogan, 1998; Luthar & Suchman, 2000a). Accordingly, the second 12 of the 24 RPMG sessions are focused on specific parenting issues, such as alternatives to physical punishment, age-appropriate limits in discipline, and warmth in parenting.

At the level of the community, a pronounced risk is exposure to stigma (El-Bassel et al., 2000; Eliason & Skinstad, 1995; Hogan, 1998; Luthar et al., 1998; Najavits et al., 1995); in clinical settings, the fallout of such stigmas is wariness of strictly didactic treatment approaches that seem to emphasize addicted women's deficits as parents (Levy & Rutter, 1992). The effort in RPMG, therefore, is to discuss child-rearing issues in the context of nonjudgmental, supportive experiences using insight-oriented therapy. A second community-level risk is dysfunctional social networks: isolation is a serious problem, and close relationships that do exist reflect various difficulties such as domestic violence (Amaro & Hardy-Fanta, 1995; Brunswick & Titus, 1998; El-Bassel et al., 2000; Harmer et al., 1999; Hogan, 1998; Wald, Harvey, & Hibbard, 1995). Accordingly, RPMG was developed as a supportive treatment, with the use of a group format designed to help women develop their interpersonal skills, to perceive the universality of dilemmas pertaining to roles as women and mothers (e.g., Yalom, 1985), and to benefit from mutually supportive interpersonal networks.

In terms of therapeutic characteristics, four features define RPMG as an intervention. The first is a supportive therapists'stance. Encompassing the Rogerian constructs of acceptance, empathy, and genuineness, this is essential to foster a strong therapeutic alliance and to meet mothers' unmet developmental needs (e.g., trust vs. mistrust in relationships). The second is an interpersonal, relational focus (see Klerman, Weissman, Rounsaville, & Chevron, 1984), a component addressing the interpersonal isolation and stress figuring prominently in addicted women's lives. The third feature is discovery-based, insight-oriented parenting skill facilitation. Rather than "instructing" mothers about appropriate parenting, role plays and brainstorming exercises are used to encourage them to explore their own parenting strategies and to guide them toward optimal approaches (for further description of the RPMG intervention, see Luthar & Suchman, 1999, 2000a).

With regard to features as a group treatment, RPMG is restricted to mothers and to female therapists to optimize women's comfort in discussing sensitive issues such as their own victimization. To accommodate the frequently chaotic schedules of patients in methadone treatment, group membership is open or rotating. Although closed-group membership can promote group cohesion and trust, open enrollment provides the opportunity to engage women in treatment when each of them is highly motivated to join. Sessions are led by a graduate level clinician with expertise in working with families as well as addiction-related issues.1 All sessions are semistructured, and a therapists' manual (Luthar, Suchman, & Boltas, 1997) provides a detailed outline for addressing each session topic.

With regard to children's age span, the group intervention was intentionally designed to accommodate mothers of children birth to 16 years for the following reasons. First, a broad age span allowed mothers a natural context within which to share experience and provide guidance to one another, to ask each other questions about upcoming developmental stages, and to share advice with newer mothers about earlier phases of development. Second, our aim was to provide parental guidance that could apply broadly to parenting across different phases of development rather than focusing more specifically on any one stage of child development. For example, although limit setting strategies vary with children's age, limit setting can be more generally understood and applied as a means to maintaining a calm family environment in which the parent maintains control and order. Our aim was to discuss themes such as this one that were more or less universal to all stages of parenting so that mothers could adopt new views about the parent-child relationship and apply them broadly with all children in their families. In contrast to behavioral parent training programs that aim to teach parents to manage children's misbehavior (see, e.g., Catalano et al., 1999; Kumpfer, 1998), this approach aimed to promote mothers' understanding of their children's needs more broadly, including the need for support, nurturance, structure, limits, emotional regulation and security.

Go to:
The Pilot Study
The RPMG treatment was originally designed, manualized, and tested as part of a 3-year psychotherapy development project (Luthar & Suchman, 2000a). Opioid abusing women who received this intervention along with standard treatment in methadone programs were compared with those receiving standard treatment alone. Standard treatment entailed participation in weekly, 1-hr counseling groups and periodic meetings with case managers to secure basic needs (e.g., housing or welfare benefits). The counseling groups were led by certified drug clinicians and focused on information on the unfolding of addictions and pitfalls of addictive behaviors.

Effects of the RPMG intervention were evaluated in terms of the women's functioning as parents, their psychological functioning, and adjustment of their children. The single most critical domain was the mother's risk for maltreating behaviors, a serious problem among addicted parents (Ammerman, Kolko, Kirisci, Blackson, & Dawes, 1999; Dore & Doris, 1998; Dunn et al., 2002; Rogosch, Cicchetti, Shields, & Toth, 1995); this was assessed via the women's own reports and also by children's reports for children over 7 years of age. Also assessed were women's positive parenting behaviors in terms of the affective quality of the relationship: involvement and communication with their children. The women's psychosocial adjustment was assessed in terms of satisfaction in their roles as mothers as well as depressive symptoms, and their children's psychosocial functioning (e.g., internalizing, externalizing, and clinical, school, and personal maladjustment) were evaluated by both mothers' and children's reports. Finally, data on the women's drug use were also examined, as improvements in addicted women's psychosocial functioning can carry over to their substance use as well (e.g., Najavits, Weiss, Shaw, & Muenz, 1998).

In addition to testing effectiveness, also examined in the pilot study was whether RPMG did, in fact, provide therapeutic components distinct from those in standard drug counseling. A Therapist Adherence Rating Scale was developed, with items based on the defining features of each of the two interventions (RPMG and standard drug counseling).

Results showed that at the end of the 24-week treatment, mothers receiving RPMG demonstrated lower risk for child maltreatment (by mothers' and children's reports), greater involvement with children, and more positive psychosocial adjustment, than women who received methadone counseling alone. Small to moderate effect sizes for group differences were also found for mothers' and children's reports of child maladjustment. Notably, urinalyses indicated that RPMG mothers showed greater improvements in opioid use over time than comparison mothers. At 6 months posttreatment, RPMG recipients continued to be at an advantage, although the magnitude of group differences was lower. Finally, the Therapist Adherence Scale had good psychometric properties and did discriminate between the treatments.

Participants' experiences of an early cognitive behavioral intervention for adolescents with symptoms of depression

Bru, L., Solholm, R., & Idsoe, T. (2013)

Cognitive–behavioral therapy (CBT) has been documented to be effective in treating depression in adolescence, but there is great variability in the clinical outcome of CBT trials. This may in part be due to variations in the content of, and emphasis on different CBT components. Moreover, little is known about adolescents' subjective experiences of CBT interventions, which also might be related to outcome. In this qualitative study, nine adolescents were interviewed about their experiences of the specific components in a CBT group intervention. The results showed that the adolescents experienced the cognitive component of the course as most useful, but somewhat difficult to use. Psycho-education, behavioral activation and the social relationships component were also experienced as beneficial. Their experiences regarding the relaxation training and the homework assignments were mixed. Negative aspects of the intervention included the experience of guilt related to being depressed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

Relations between parent and adolescent problems among adolescents presenting for family-based marijuana abuse treatment

Kamon JL, Stanger C, Budney AJ, Dumenci L. (2006)

Family-based treatments for adolescent substance abuse demonstrate efficacy and are becoming a treatment of choice. Family risk factors for substance abuse may present barriers to or suggest targets for modification during treatment. The sample included 149 adolescents presenting for substance abuse treatment and their parents. Structural equation modeling tested the hypothesis that parent psychological problems, parent substance use, and parenting behaviors influence adolescent psychological problems and substance use. This study is among the first to examine the unique impact of maternal and paternal variables on adolescent problems within one analytical model. Results indicated that parental psychological problems were directly associated with adolescent psychological problems after controlling for parent substance use and parenting behaviors. Paternal positive involvement and poor monitoring were also independently associated with adolescent substance use. Results suggest that both mothers' and fathers' symptoms of psychopathology play an important role in the symptoms of adolescents in treatment for substance abuse. Findings highlight the need for family-based assessment in adolescent treatment populations to address important clinical and research questions.

Relations between Parent Psychopathology, Family Functioning, and Adolescent Problems in Substance-Abusing Families: Disaggregating the Effects of Parent Gender

Burstein M, Stanger C, Dumenci L. (2012)

The present study: (1) examined relations between parent psychopathology and adolescent internalizing problems, externalizing problems, and substance use in substance-abusing families; and (2) tested family functioning problems as mediators of these relations. Structural equation modeling was used to estimate the independent effects of parent psychopathology and family functioning problems by parent gender. Participants included 242 parents in treatment for substance abuse and/or dependence and 59 of their coparents (16.9% in treatment for substance-abuse/dependence) from middle income households (SES: M = 4.7; SD = 2.1). Ratings were obtained for 325 adolescents (48% female; 27.8% non-Caucasian) between the ages of 10 and 18 years (M = 13.5 years; SD = 2.5 years). Parent psychopathology, family functioning problems, and adolescent problems were assessed with parent and coparent ratings on the Symptom Checklist (SCL-90)/Brief Symptom Inventory (BSI), the Family Relationship Measure, and the Child Behavior Checklist, respectively. Results indicated that maternal psychopathology was directly related to adolescent internalizing problems and substance use, but maternal perceptions of family functioning problems failed to mediate relations between maternal psychopathology and adolescent problems. By contrast, paternal perceptions of family functioning problems uniquely mediated relations between paternal psychopathology and adolescent externalizing problems. Findings underscore the importance of examining how mothers and fathers may differentially impact adolescent problems in substance-abusing families.

Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents

Pakenham, K. I. and S. Bursnall (2006)

Objective: To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents. Subjects: A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability. Method: A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes. Results: Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect. Conclusions: Findings delineate the key impacts of young caregiving and support a stress and coping model of adjustment in children of a parent with multiple sclerosis.

Relations between social support, appraisal, and coping and both positive and negative outcomes for children of a parent with MS and comparisons with children of a parent with MS and comparisons with children of healthy parents

Pakenham, K.I.. & Bursnall, S. (2006)

Abstract
OBJECTIVE:
To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents.
SUBJECTS:
A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability.
METHOD:
A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes.
RESULTS:
Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect.

Relationship-based intervention with at-risk mothers: Factors affecting variations in outcome

HEINICKE, C. M., GOORSKY, M., MOSCOV, S., DUDLEY, K., GORDON, J., SCHNEIDER, C. & GUTHRIE, D. (2000)

A previous group comparison had shown that in families experiencing the UCLA Family Development Project intervention as opposed to a group that did not, mothers became more responsive to the needs of their infants, and the infants were more secure in their attachment to their mothers. The present study asks whether variations in these outcomes following participation in a relationally based intervention are anticipated by maternal involvement in the intervention, partner support, personality dimensions, and mother–infant interactions that were assessed early in the intervention process. The sample consists of 46 mothers at risk for inadequate parenting who also were poor and generally lacked support. It was found that variations at 12 months of age in the child's secure response to separation, his or her expectation of being cared for (felt security), and the mother's responsiveness to need are anticipated by variations in the mother's 6- to 12-month involvement in the home-visiting intervention, the quality of her partner's support as measured at six months, and her own trust, ability to form stable relationships, and lack of self doubt. Parents who, at one month, were responsive to the needs of their more soothable babies were more likely to have secure children at 12 months, but these associations were not as robust as those summarized above. © 2000 Michigan Association for Infant Mental Health.

Relative importance of patient disease indicators on informal care and caregiver burden in Alzheimer's disease

Bergvall N, Brinck P, Eek D, Gustavsson A, Wimo A, Winblad B, et al. (2011)

Background: Cognition, abilities in activities of daily living (ADL), and behavioral disturbances in patients with Alzheimer's disease (AD) all influence the number of hours informal caregivers spend caring for their patients, and the burden caregivers experience. However, the direct effect and relative importance of each disease severity measure remains unclear. Methods: Cross-sectional interviews were conducted with 1,222 AD patients and primary caregivers in Spain, Sweden, the U.K. and the U.S.A. Assessments included informal care hours, caregiver burden (Zarit Burden Inventory; ZBI), cognition (Mini-mental State Examination; MMSE), ADL-abilities (Disability Assessment for Dementia scale; DAD), and behavioral symptoms (Neuropsychiatric Inventory Questionnaire; NPI-severity). Results: Multivariate analyses of 866 community-dwelling patients revealed that ADL-ability was the strongest predictor of informal care hours (36% decrease in informal care hours per standard deviation (SD) increase in DAD scores). Severity of behavioral disturbances was the strongest predictor of caregiver burden (0.35 SD increase in ZBI score per SD increase in NPI-Q severity score). In addition, the effect of ADL-abilities was, although attenuated, not negligible (0.28 SD increase in ZBI score per SD increase in DAD score). Decreasing cognition (MMSE) was associated with more informal care hours and increased caregiver burden in univariate, but not in adjusted analyses. Conclusions: For patients residing in community dwellings, the direct influence of patients cognition on caregiver burden is limited and rather mediated by other disease indicators. Instead, the patients ADL-abilities are the main predictor of informal care hours, and both ADL-abilities and behavioral disturbances are important predictors of perceived caregiver burden, where the latter has the strongest effect. These results were consistent across Sweden, U.K. and the U.S.A.

Patienters och anhörigas upplevelser av vård i hemmet under coronapandemin

Doris Lydahl, Theresa Larsen (2021)

Personcentrering och patientinvolvering framhålls som hörnstenar i omställningen till en mer nära vård. Då behöver frågan "Vad är viktigt för dig som patient och närstående?" ställas oftare. I denna studie har vi undersökt hur patienter och anhöriga till patienter inskrivna i kommunal hälso- och sjukvård upplevt vård i ordinärt boende under coronapandemin. Vi har särskilt fokuserat på att undersöka om patienter och anhöriga känt sig trygga med att få vård i hemmet, om de upplevt att de kunnat påverka vården och om de tyckt att de fått den vård de har rätt till.
Studien belyser således kommunal hälso- och sjukvård ur ett patient- och anhörigperspektiv. Den bidrar med kunskap om vad som är viktigt för patienter och anhöriga när vård ges i hemmet och hur man kan arbeta med nära vård, såväl under en sådan kris som en pandemi innebär, som under mer normala omständigheter.

Patientkommunikation i praktiken – information dialog och delaktighet

Larsson, Inger, Rahle Hasselbalch, Lena, Palm, Lars (2008)

Boken visar vägen till funktionell kommunikation i mötet mellan vårdgivare och patient, det vill säga informationsöverföring och dialog som möjliggör patientens delaktighet i behandling och rehabilitering. Huvuddelen av boken är praktiskt inriktad och tänkt både som en lärobok för sjuksköterske-, sjukgymnast-, dietist- och arbetsterapeutprogrammet och som en praktisk handbok för yrkesverksamma.

Denna titel har tidigare givits ut av Norstedts men ingår numera i Studentlitteraturs sortiment.

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

Johansson A, Ruzin HO, Graneheim UH, Lindgren BM. (2014)

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.

Individualisering, utvärdering och utveckling av anhörigstöd

Winqvist, Marianne (2010)

Ett av Nationellt kompetenscentrum Anhörigas (NKA) prioriterade områ-
den är Individualisering, utvärdering och utveckling av anhörigstöd. Syftet
med denna kunskapsöversikt är att utifrån en litteraturgenomgång beskriva
hur anhörigstöd har utvecklats och vad forskning och utvärderingar av anhörigstöd
har givit för resultat med fokus speciellt på anhörigstödets anpassning
till anhörigas olika förutsättningar.
Frågeställningar som studeras är:
• Hur har anhörigstödet utvecklats från tiden för Anhörig 300 till idag?
• Hur kan anhörigas förutsättningar variera och vad betyder det för anhörigstödets
utformning?
• Hur ser anhörigas behov av stöd ut?
• Vad har utvärderingar av olika former av anhörigstöd givit för resultat
när det gäller anpassning till individuella behov och situationer.
Kunskapsöversikten bygger på publicerade forskningsresultat, FoUrapporter,
utredningar och offentliga skrifter från tidsperioden år 2000 till
mitten av år 2008. Endast svenska förhållanden studeras.
Översikten inleds med en genomgång utifrån Socialstyrelsens uppföljningar
av hur det nuvarande anhörigstödet har utvecklats från och med Anhörig
300 och framåt. Statens satsningar har varit stora och anhörigstödet
har utvecklats starkt, men mycket återstår att göra inom området. Kunskap
som saknas rör de mer kvalitativa aspekterna av anhörigstödet, innehållet
och om anhörigstödet motsvarar anhörigas behov.
För att problematisera vad det är för olika slags behov och situationer
som anhörigstödet skall möta görs en genomgång av den kunskap som
finns om anhörigskapets olika förutsättningar. Teman som behandlas är
olika anhörigtypologier, kön, ålder, relationens betydelse, klass och livsform,
sjukdomar och symptom, vård- och omsorgsprocessen, omfattning av vårdoch
omsorgsinsatser, hälsa, geografiskt avstånd, stad och landsbygd, närmiljöns
betydelse, socialt stöd och coping. Resultatet av denna genomgång
visar att förutsättningarna för anhörigskapet uppvisar mycket stora variationer
och att detta ställer krav på anhörigstödet om det skall skräddarsys eller
individualiseras.
Hur det är att vara anhörig och anhörigvårdare, speciellt till personer med
demenssjukdomar, finns det mycket kunskap om. I texten beskrivs anhöri-10
gas motiv till att hjälpa eller inte hjälpa, anhörigas upplevelser och dilemman
samt anhörigas behov av stöd. Positiva och negativa upplevelser kan förekomma
samtidigt och kanske till och med förutsätter varandra. Återkommande
inom forskningen beskrivs känslomässiga och existentiella upplevelserna
som svåra, tillsammans med bundenhet och fysisk trötthet. Studier
visar även att anhöriga kan skatta sina liv i positiva termer och att det är
tillfredsställande att kunna hjälpa. Anhöriga kan ha svårt att identifiera egna
stödbehov, men insatser som efterfrågas är avlösning (flexibel och med kort
varsel), information och kunskap, någon att tala med, att bli bekräftad, uppskattad
och sedd samt ekonomisk ersättning. Att vara anhörig i samband
med vårdplaneringar och biståndsbedömningar, att vara anhörig till någon
som bor på särskilt boende samt att vara anhörig i anslutning till vård i livets
slutskede kan innebära speciella krav och förväntningar. En presentation ges
därför av den kunskap som vi har av att vara anhörig i dessa specifika situationer.

Genomgången avslutas med en redovisning av de utvärderingar som har
gjorts av olika former av anhörigstöd som avlösning i form av korttidsvård
och växelvård, dagverksamhet, kombination av dag- och nattavlösning och
avlösning i hemmet, anhöriggrupper, utbildning av anhöriga, utbildning av
personal, anhörigcentraler och träffpunkter, må bra-aktiviteter, enskilda
samtal samt övrigt stöd. De erfarenheter som har dragits av att använda
instrumentet COAT för planering, uppföljning och utvärdering av stöd till
anhöriga redovisas samt resultaten från de två svenska kontrollerade interventionsstudierna
om anhörigstöd som finns där resultaten visar att utbildning
och stödgrupper för anhöriga har positiva effekter.
Sammanfattningsvis kan konstateras att det är svårt att få grepp om kunskapsläget
inom området eftersom dokumentation och systematiska uppföljningar
av befintliga verksamheter när det gäller innehåll och kvalitet,
vilka anhöriga verksamheterna når och till vilken nytta, i stor utsträckning
saknas. Området är också behäftat med en del metodologiska svårigheter
som bland annat medför att det är svårt att jämföra resultaten mellan olika
studier. Mest kunskap har vi om sammanboende anhörigas situation, oftast
makar och makor och dessutom anhöriga till personer med demenssjukdomar.
Grovt uttryckt kan sägas att det anhörigstöd som ges är bra för många
anhöriga, men att vi inte kan uttala oss om vilka dimensioner som är bra för
vilka anhöriga. Likaså vet vi inte för vem det befintliga anhörigstödet kanske
inte passar. Kopplingen mellan anhörigas olika upplevelser av sin situation
och målet med anhörigstödet kan också utvecklas.
Som en (ofta outtalad) röd tråd i de texter som ligger till grund för kunskapsöversikten
går samtalets eller mötets betydelse. Inom ramen för ett av 11
NKA:s lärande nätverk konstateras också att det enskilda samtalet kanske är
vårt mest underskattade anhörigstöd. Samtalet som stödform har dock inte
lyfts fram i någon större utsträckning inom forskning och utvärderingar
vilket innebär att mycket av innehållet i dagens anhörigstöd är osynliggjort.
Likaså saknar vi dokumenterad kunskap om det som kan benämnas som
osynligt stöd det vill säga de mer individbaserade kvalitativa dimensionerna
som kan innebära att anhöriga upplever sig sedda, känner sig trygga, har
förtroende för personal etc. Det är i samtal och möten som grunden för
detta stöd läggs.

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