Master of Science
Health and Rehabilitation Sciences
Prior research has identified that older adults with Parkinson’s disease experience both personal and social difficulties due to the interactions between environmental factors (e.g. social attitudes about impairments) and their physical and cognitive challenges of their condition. My thesis explored how older adults with Parkinson’s disease negotiated their contexts of personal and social identity post-diagnosis. Using a constructivist, narrative approach, I aimed to understand what personal and social factors contributed to how people with Parkinson’s disease maintain, negotiate, and adapt their identity within the private sphere of the home and the broader community. For all five participants, three sessions took place, including two in-depth interviews, in order to gain as much insight and detail as possible into each participant’s story, ideas, and opinions about negotiating their identity with Parkinson’s disease. From this data, four major themes emerged including: Negotiating identity while managing Parkinson’s disease, Acceptance as a process, Resisting a disabled identity, andThe centrality of occupations and roles. From this research, greater understanding and awareness can be raised for the hardships impacting the identities of those with Parkinson’s disease, such as stigmatizations and physical and cognitive limitations leading to loss of occupations, to encourage further attention and expansion of community engagement and activities for these individuals.
Summary for Lay Audience
Parkinson’s disease is a neurological condition that impacts the motor and cognitive skills of the person affected. This disease most commonly affects individuals at 60 years of age and older. When an individual is diagnosed with Parkinson’s disease, the symptoms can vary between people, and not everyone with Parkinson’s disease will show the same symptoms. Because of this, there is minimal public understanding and education on Parkinson’s disease and how an individual is affected and presents symptoms. This in turn, can affect how someone with Parkinson’s is perceived in both private and public spaces.
The identity of an individual can vary greatly depending on personal and social factors. This study intended to investigate and understand how the personal and social identity of an older adult with Parkinson’s disease may be negotiated, adapted, or maintained following diagnosis of their condition. By conducting in-depth interviews with participants, narratives were created to story the experiences of those participants affected by Parkinson’s, and understand if and how their identity had been negotiated since their diagnosis. Personal identity was defined as the characteristics, traits, and/or qualities that make someone unique or distinct from another, whereas social identity was thought of as the significance and meaning we tie to the memberships or groups we belong to within society.
From conducting multiple interviews with each participant, narrative accounts were created to capture the stories each individual described about their journey with Parkinson’s and their feelings towards their identity. From these narrative interviews, four major themes emerged: Negotiating identity while managing Parkinson’s disease, Acceptance as a process, Resisting a disabled identity, and The centrality of occupations and roles. From this research, greater understanding, awareness, and acknowledgement of Parkinson’s can be raised to understand the hardships and challenges these individuals face with their identity, such as stigmatizations and physical and cognitive limitations leading to loss of activities, tasks, and hobbies, to encourage further attention and expansion of community engagement and activities for these individuals.
Sheldrake, Elena, ""It's not that I have Parkinson's, I am Parkinson's": The management and negotiation of identity in older adults with Parkinson's disease" (2019). Electronic Thesis and Dissertation Repository. 6301.