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The Impact of Living with Parkinson’s Disease: Balancing within a Web of Needs and Demands
Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Lund University.
Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.ORCID-id: 0000-0003-4820-6203
Högskolan Kristianstad, Fakulteten för hälsovetenskap, Forskningsmiljön PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
Högskolan Kristianstad, Forskningsplattformen för Hälsa i samverkan. Högskolan Kristianstad, Fakulteten för hälsovetenskap, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.ORCID-id: 0000-0003-0161-4795
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2018 (engelsk)Inngår i: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, Vol. 2018, artikkel-id 4598651Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

This study explores the impact of living with Parkinson’s disease (PD). Nineteen persons (11 women) aged 55–84 diagnosed with PD 3–27 years ago participated. Data were collected through semistructured interviews, which were recorded, transcribed verbatim, and analysed by qualitative content analysis. Four categories represented the impact of living with PD: “Changed prerequisites for managing day-to-day demands,” “Loss of identity and dignity,” “Compromised social participation,” and “The use of practical and psychological strategies.” There was a shift from an internal to an external locus of control in managing, control, competence, relatedness, and autonomy. According to self-determination theory, a shift towards extrinsically motivated behaviours may occur when these basic needs are thwarted, leading to compensatory strategies or needs substitutes with negative consequences on health and well-being. We suggest a needs-based approach as an important starting point to better understand the consequences of living with PD and to explore the means for people with PD to acquire an improved quality of life on their own terms. In conclusion, our findings suggest for a shift in focus, from a biomedical to a needs-based approach to understand the impact of living with PD and facilitate more person-centred care and person-centred outcome measurement.

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2018. Vol. 2018, artikkel-id 4598651
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URN: urn:nbn:se:hkr:diva-18449DOI: 10.1155/2018/4598651ISI: 000441607100001OAI: oai:DiVA.org:hkr-18449DiVA, id: diva2:1237866
Tilgjengelig fra: 2018-08-10 Laget: 2018-08-10 Sist oppdatert: 2018-08-30bibliografisk kontrollert

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Forlagets fullteksthttps://www.hindawi.com/journals/pd/2018/4598651/

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Westergren, AlbertEdberg, Anna-KarinHagell, Peter
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