Learning to live with Parkinson’s disease in the family unit:an interpretative phenomenological analysis of well-being


We investigated family members’ lived experience of Parkinson’s disease (PD) aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey.

Publication DOI: https://doi.org/10.1007/s11019-016-9716-3
Divisions: College of Health & Life Sciences > School of Psychology
College of Health & Life Sciences
College of Health & Life Sciences > Chronic and Communicable Conditions
Additional Information: © The Author(s) 2016. This article is published with open access at Springerlink.com
Uncontrolled Keywords: caregiver,diagnosis,disease management,lifeworld,Parkinson’s disease,qualitative research,Health Policy,Education,Health(social science)
Publication ISSN: 1572-8633
Last Modified: 04 Mar 2024 08:17
Date Deposited: 18 Jul 2016 13:10
Full Text Link: http://link.spr ... 1019-016-9716-3
Related URLs: http://www.scop ... tnerID=8YFLogxK (Scopus URL)
PURE Output Type: Article
Published Date: 2017-03
Published Online Date: 2016-06-30
Accepted Date: 2016-06-23
Submitted Date: 2016-06-23
Authors: Smith, Laura J.
Shaw, Rachel L. (ORCID Profile 0000-0002-0438-7666)



Version: Published Version

License: Creative Commons Attribution

Export / Share Citation


Additional statistics for this record