British Journal of Occupational Therapy
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Although it is accepted that individuals with Parkinson’s disease (PD) must navigate challenges such as receiving their diagnosis, and changing daily occupations, little is known about how they navigate. The purpose of this study is to deepen the current understanding of the experience of living with PD and its implications for occupation through a narrative visual methodology (photo-elicitation). Methods: Six individuals with PD were asked to take photographs and share verbal narrative accounts to illustrate their experience of living with PD. Findings: 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 PD (accepting the disease as part of who they were); (2) Negotiating engagement in occupation (ongoing deliberation whether to continue engaging in certain aspects of life as PD progressed); and (3) Being ready to accept changes that impact personal or social identity (Readiness to accept help and to identify as someone with PD). Conclusion: Attending to insights regarding the lived experience of PD will enhance quality of care through informing an enriched client-centered, occupation-based approach.
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