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The Impact of Living with Parkinson’s Disease: Balancing within a Web of Needs and Demands
Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Lund University.
Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education. Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Department of Nursing and Integrated Health Sciences.ORCID iD: 0000-0003-4820-6203
Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Department of Nursing and Integrated Health Sciences.ORCID iD: 0000-0003-0161-4795
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2018 (English)In: Parkinson's Disease, ISSN 2090-8083, E-ISSN 2042-0080, Vol. 2018, article id 4598651Article in journal (Refereed) 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.

Place, publisher, year, edition, pages
2018. Vol. 2018, article id 4598651
National Category
Health Sciences Neurology Nursing
Identifiers
URN: urn:nbn:se:hkr:diva-18449DOI: 10.1155/2018/4598651ISI: 000441607100001OAI: oai:DiVA.org:hkr-18449DiVA, id: diva2:1237866
Available from: 2018-08-10 Created: 2018-08-10 Last updated: 2021-09-21Bibliographically approved

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Publisher's full texthttps://www.hindawi.com/journals/pd/2018/4598651/

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Sjödahl Hammarlund, CatharinaWestergren, AlbertEdberg, Anna-KarinHagell, Peter
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Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and EducationResearch Platform for Collaboration for HealthDepartment of Nursing and Integrated Health Sciences
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Parkinson's Disease
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