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

Laura J. Smith, Rachel L. Shaw

Research output: Contribution to journalArticle

Abstract

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.

LanguageEnglish
Number of pages9
JournalMedicine, Health Care and Philosophy
VolumeIn press
Early online date30 Jun 2016
DOIs
Publication statusE-pub ahead of print - 30 Jun 2016

Fingerprint

Parkinson Disease
well-being
Learning
Disease
learning
illness
future orientation
Delivery of Health Care
Self-Help Groups
kinship
Birds
family member
Interviews
threat
interview
Research
experience
Group

Bibliographical note

© The Author(s) 2016. This article is published with open access at Springerlink.com

Keywords

  • caregiver
  • diagnosis
  • disease management
  • lifeworld
  • Parkinson’s disease
  • qualitative research

Cite this

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