Living with Parkinson's—past, present and future: a qualitative study of the subjective perspective

Abstract

Background: the social impact of Parkinson's is difficult to capture in quantitative research given the condition's variable presentation, so qualitative research is needed to support a person-centred approach. Aims: to describe how people with Parkinson's experience living with their condition over time. Methods: 27 audio-recorded verbatim-transcribed interviews were analysed through the grounded theory method. Findings: past, present and future were the core categories that emerged. Past is the dimension of regretted memories of past life overturned by the communication of diagnosis. Present is the time dimension in which patients concretely experience the hindrances associated with the condition (loss of autonomy, submissive acceptance and social embarrassment), and the resources (search for autonomy, serene or in-progress acceptance, and social support). Future is characterised by both positive visions of tomorrow and negative ones (worry, resignation, denial). Conclusion: these results, highlighting what living with Parkinson's means over time, may contribute to a better tailoring of nursing practice to the person's needs and rhythm, in a perspective of continuous adaptation.