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Att leva med Huntingtons sjukdom: Ur ett personperspektiv
Halmstad University, School of Social and Health Sciences (HOS).
Halmstad University, School of Social and Health Sciences (HOS).
2014 (Swedish)Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesisAlternative title
To live with Huntington's disease : From individuals perspectives (English)
Abstract [sv]

Huntingtons sjukdom är en ärftlig degenerativ sjukdom som förekommer hos 800-1000 personer i Sverige. Tidigare forskning visar på bristfällig kunskap om sjukdomen hos vårdpersonal vilket innebär ett stort lidande för de drabbade. För att skapa en djupare kunskap krävs att vårdpersonal lyssnar till personers upplevelser. Syftet med studien var att belysa personers upplevelse av att leva med Huntingtons sjukdom. För att få en överblick av forskningsläget genomfördes en systematisk sökordsbaserad litteraturstudie. Totalt elva artiklar granskades och kodades. Resultatet presenteras i tre huvudrubriker: upplevelser i relation till sjukdomen, upplevelser i relation till vården och upplevelser i relation till livet. Resultatet visade att lidande var centralt i samtliga upplevelser. Resultatet diskuteras mot bakgrund av Katie Erikssons lidandeteori. Avslutningsvis belyses betydelsen av fördjupad kunskap från vårdpersonal för att minska vårdlidandet och därmed minska livslidandet. Ytterligare forskning inom ämnet krävs för att vårdpersonal ska kunna bemöta personer med Huntingtons sjukdom på bästa möjliga sätt. 

Abstract [en]

Huntington’s disease (HD) is a genetic degenerative disease affecting 800-1000 persons in Sweden. Previous research indicate that lack of knowledge about the disease among health care professionals adds to the suffering of persons with HD. Knowledge about the experiences of people living with the disease is required to improve the care. The aim of this study was to examine peoples´ experiences of living with Huntington’s disease. In order to get insights on the actual situation a systematic literature review was conducted. A total sample of eleven articles was reviewed and coded, resulting in three main themes: Experiences regarding the disease, Experiences regarding care and Experiences regarding life. The result showed that suffering was key to understanding the experience of living with the disease. The result of this study is discussed with reference to Katie Eriksson’s theory of suffering. Further research is required in order to improve the care for people with HD. By listening to the experiences of people affected by HD, health care professionals can learn how to create the best encounter possible and thus relieve some aspects of suffering.  

Place, publisher, year, edition, pages
2014. , 15 p.
Keyword [en]
Experience, Huntington's disease, individuals perspective, suffering
Keyword [sv]
Huntingtons sjukdom, lidande, personperspektiv, upplevelse
National Category
Nursing
Identifiers
URN: urn:nbn:se:hh:diva-25329OAI: oai:DiVA.org:hh-25329DiVA: diva2:716723
Subject / course
Nursing
Supervisors
Examiners
Available from: 2014-05-16 Created: 2014-05-12 Last updated: 2014-05-16Bibliographically approved

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Huntingtons sjukdom(792 kB)214 downloads
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CiteExportLink to record
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