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Har han det bra så har jag det bra: ett aktionsforskningsprojekt där ett närståendestöd planerades i samarbete med närstående till yngre personer med demenssjukdom
Kristianstad University College, School of Health and Society.
2009 (Swedish)Independent thesis Advanced level (degree of Master (Two Years)), 10 credits / 15 HE creditsStudent thesisAlternative title
If he is well, I am well : a Participatory Action Research project to plan support for relatives to younger persons with dementia (English)
Abstract [sv]

Om närstående ska orka leva tillsammans med en yngre demenssjuk partner behöver de erbjudas stöd som är utformat utifrån deras situation och behov. Syftet var att i samarbete med närstående till personer vars demenssjukdom debuterat före 65 års ålder planera ett närståendestöd. Metoden som användes var Participatory Action Research (PAR), en interaktiv forskningsmetod som innefattar reflektion, analys och handling. Fokusgruppssamtal genomfördes med två fokusgrupper vid vardera tre tillfällen. Samtliga deltagare var make eller maka som levde tillsammans med en yngre demenssjuk partner. Studien visade att närstående genomgår en process som har stora likheter med och följer den transitionsprocess som personen med demenssjukdom går igenom. Initialt upplevde närstående oro, ovisshet,ensamhet och osäkerhet och man upplevde brist på stöd. För att lindra dessa upplevelser krävs indirekt stöd riktat mot den sjuke och direkt stöd riktat mot den närstående. Tidigt i sjukdomsförloppet behövs individuellt anpassat stöd som bör förändras i takt med att sjukdomsprocessen fortskrider. Att ha tillgång till en person som kan fungera som lots mellan de olika övergångar närstående går igenom var betydelsefullt.

Abstract [en]

Living together with a younger spouse who is suffering from dementia requires that relatives are offered support. The aim of this Participatory Action Research (PAR) project was to, in collaboration with relatives, plan support for relatives to persons with dementia below 65 years of age. PAR is an interactive research method based on reflection, analysis and action. Two groups of relatives participated in focus groups at three occasions and data were content analysed. Relatives were wives or husbands to a younger person with dementia. Findings showed that relatives pass through a similar transition process as the person. It is important to offer individualized support initially, support that needs to be changed as the disease proceeds. Furthermore, the study showed that if relatives shall manage their own anxiety, uncertainty, and feelings of loneliness, emotional support is necessary. However, it is impossible to just offer direct support to the relatives without considering the sick persons’ needs. Finally, a personal guide that could follow the couple trough the entire process would be of importance.

Place, publisher, year, edition, pages
2009. , p. 33
Keywords [en]
early onset dementia, relative, support, family, next of kin, spouse, Participatory Action Research
Keywords [sv]
yngre, demenssjukdom, närstående, stöd, familj, make, Participatory Action Research
National Category
Nursing
Identifiers
URN: urn:nbn:se:hkr:diva-4800Local ID: oai:eprints.bibl.hkr.se.oai2:2551OAI: oai:DiVA.org:hkr-4800DiVA, id: diva2:231265
Presentation
(English)
Uppsok
Medicine
Supervisors
Available from: 2009-01-01 Created: 2009-01-01 Last updated: 2010-04-22Bibliographically approved

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CiteExportLink to record
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Citation style
  • apa
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