Navigating Occupation and Identity in Parkinson\u27s Disease: A Qualitative Exploration of Lived Experience

Evidence-based practice requires that health care providers interpret the best research evidence in the context of their clinical experience, while at the same time considering client knowledge and experiences. Although health care providers are becoming increasingly skilled at the evaluation of research evidence, client values and self-identified health issues are often neglected within the evidence-based practice process. Ignoring these key aspects of person-centered practice may lead to interventions that fail to target implications of a client’s disease that are important to occupational participation and quality of life. A focus on person-centeredness is particularly important in progressive neurodegenerative disorders such as Parkinson’s disease where there are no known curative treatments, and interventions must instead focus on symptom management. The purpose of this research therefore was to deepen the current understanding of the experience of life with Parkinson’s disease, and to use these understandings to inform health care practices for this group. Following a review of the lived experience literature, a primary study was conducted wherein six individuals with Parkinson’s disease were asked to take photographs and share verbal narrative accounts to illustrate their experience of living with Parkinson’s disease. Results highlight the interrelationship between occupation and identity, as many of the participants’ stories were interpreted as foregrounding the negotiation of occupation, and how such negotiation shaped their sense of identity. Overall, three major themes were identified: (1) Framing the meaning of Parkinson’s disease; (2) Negotiating engagement in occupation; (3) Being ready to accept changes that impact personal or social identity. These findings were used to make suggestions on how health care providers can enhance the level of person-centredness in their care