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Published on: December 9, 2014
Lived Experiences of Male Caregivers Supporting Individuals with Parkinson's Disease
Kelsey Lee1, Julia Yates2, Andrew M Johnson3
1School of Occupational Therapy, Western University, London, ON N6A 3K7, Canada.
Abstract:
Background/Objectives: Individuals living with Parkinson's disease often rely on informal caregivers for daily support. Existing research on caregiving has largely been framed from a predominantly female perspective. However, caregiving roles are evolving, with an increasing number of men assuming these responsibilities. Despite this shift, the experiences of male caregivers remain underexplored. A deeper understanding of their perspectives is essential to inform more inclusive and effective caregiver support in Parkinson's disease care. This study aimed to explore the lived experience of male caregivers supporting individuals with Parkinson's disease. Methods: A secondary qualitative analysis was conducted using interviews with seven male caregivers supporting individuals with Parkinson's disease. Data were analyzed using thematic analysis within a descriptive phenomenological framework. Results: Three overarching themes emerged. (1) Economic and employment challenges, including difficulties balancing work and caregiving, structural barriers to accessing services during working hours, and the financial burden of Parkinsons-related expenses, with financial stability acting as a buffer against stress; (2) Psychological and emotional dynamics, including self-doubt linked to gender norms, the influence of personal and partner attitudes on coping, and ongoing experiences of loss; and (3) Adaptation and coping, involving renegotiation of roles, maintenance of routines, and information seeking that was experienced as both empowering and anxiety-provoking. Conclusions: Male caregiving experiences were shaped by financial stability, personal beliefs and perspectives, and the ability to adapt to changing roles and responsibilities. These findings highlight the importance of recognizing gender-specific caregiving needs and incorporating targeted support for male caregivers into Parkinson's disease care.
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