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"Finns det några vardagshjältar är det alla som lever varje dag med PWS": En kvalitativ studie om vårdares upplevelser kring kost och autonomi hos vuxna med Prader-Willis syndrom
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.
2015 (Swedish)Independent thesis Basic level (degree of Bachelor), 10 credits / 15 HE creditsStudent thesisAlternative title
"The everyday heroes are the ones constantly living with PWS" : A qualitative study of caregivers' experiences when it comes to food and autonomy in adults with Prader-Willi syndrome (English)
Abstract [sv]

Bakgrund Prader-Willis syndrom (PWS) är en genetisk mutation och drabbar cirka 8-10 barn per år i Sverige. Personer med syndromet upplever en ständig hunger och har en tvångsmässig relation till mat, samtidigt som de har ett lågt energibehov. Drabbade personer löper stor risk för fetma och behöver en diet med kalorirestriktion samt mycket fysisk aktivitet, och personer med PWS behöver ständig tillsyn av vårdare och anhöriga. Eftersom PWS är komplext med flertalet svårigheter är det angeläget att utforska hur vårdare upplever sitt arbete med vuxna som har PWS.

Syfte Att undersöka hur vårdare upplever att arbeta med vuxna med PWS när det kommer till kosten, hälsoförebyggande åtgärder samt de boendes autonomi.

Metod Fem semi-strukturerade intervjuer genomfördes med vårdare på ett boende i Sverige för vuxna med PWS. Intervjuerna spelades in digitalt via mobiltelefon och transkriberades sedan ordagrant. Data analyserades med kvalitativ innehållsanalys och meningsbärande enheter skapade koder och kategorier som sedan formade rubriker till resultatet.

Resultat Informanterna upplevde stort ansvar kring de boendes liv och hade hand om allt kring exempelvis kost och ekonomi. De upplevde att mat utgjorde grunden till flertalet konflikter som ofta ledde till aggressivitet och känslomässiga reaktioner hos de boende. De upplevde även ett dilemma mellan att värna om de boendes hälsa och att uppmuntra till deras självbestämmande. Motion och aktiviteter var något som prioriterades högt på boendet.

Slutsats Vårdarna upplevde flertalet svårigheter när det kom till kost och kände ett stort ansvar för de boende. Att finna balans mellan att värna om de boendes hälsa och självbestämmande var ett gemensamt problem. Samtliga ansåg att boendet arbetade aktivt med hälsoförebyggande åtgärder och att de boende fick goda möjligheter till motion och aktivitet.

Abstract [en]

Background Prader-Willi syndrome (PWS) is a genetic mutation which affects around 8-10 children each year in Sweden. People with this syndrome experience constant hunger and have an obsessive relationship with food, moreover, they also have a lower energy requirement. People with PWS run the risk of becoming obese and are in need of a diet that restricts the caloric intake, they also need increased physical activity. People with PWS are in need of constant surveillance from caregivers. Since PWS is complex with multiple issues it is of interest to explore how caregivers experience their work with adults with PWS.

Objective To explore how caregivers experience working with adults with PWS when it comes to food and physical activity, as well as their residents’ autonomy.

Method Five semi structured interviews were conducted with caregivers at a group home in Sweden for adults with PWS. The interviews were recorded digitally using a mobile phone and then transcribed. The data was analysed using qualitative content analysis and meaning units created codes and categories which then formed the headlines of the result section.

Result The caregivers experienced great responsibility for the residents and took care of everything from their food to their economy. They felt that food was the basis of many conflicts which often could result in aggression and emotional outbursts. They also experienced a dilemma between caring for the residents’ health and encouraging their autonomy. Physical exercise and activities was a priority at the group home.

Conclusion The caregivers experienced numerous difficulties when it came to food and felt great responsibility for the residents. To find a balance between caring for the residents’ health and autonomy was a common problem. All informants felt that the group home worked with health promoting measures and that the residents got a lot of exercise and activity.

Place, publisher, year, edition, pages
2015.
Keyword [sv]
Prader-Willis syndrom
National Category
Food Science
Identifiers
URN: urn:nbn:se:umu:diva-111306OAI: oai:DiVA.org:umu-111306DiVA: diva2:869087
Subject / course
Examensarbete inom dietistprogrammet
Educational program
Degree of Bachelor in Dietetics
Available from: 2015-11-16 Created: 2015-11-12 Last updated: 2015-11-16Bibliographically approved

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