Living with Parkinson's disease—managing identity together

Abstract

The specific aim of this paper is to discuss how individuals living with Parkinson's disease and their main family supports perceive communications with each other, with a focus on their roles related to care. The paper is based on individual interviews conducted with individuals and their main family support person. The transcripts were analyzed based on grounded theory and “managing identity together” emerged as the core category. This is discussed in terms of independence, a sense of self-sufficiency and an overall sense of personhood. Implications for other populations conclude the paper.

• Parkinson's disease
• care
• communication
• identity
• personhood
• caregiver
• grounded theory

Acknowledgements

The authors would like to thank their Research Assistant and Leslie Penner, for their contribution on this study.

Notes

1. Participants do not like the term “unpaid caregiver” for their main family support as it seemed to instrumentalize their relationship with their spouse or family member; as such this term was changed to main family support.

2. The total sample of the study was 16 participants, which included formal care providers. The formal care providers’ data will be discussed in a second paper.