Objective: To explore the lived experiences and the perceived weight of care among informal caregivers of persons with Parkinson’s disease (PD) in Kenya.

Background: Informal caregivers in Kenya face a multidimensional weight of care worsened by systemic gaps and social isolation. This study explores their lived experiences to identify the clinical and socioeconomic stressors that impact caregiver well-being.

Method: A qualitative study with 29 in-depth interviews conducted across urban (n=15) and rural (n=14). Preliminary findings have been identified through thematic memoing during the interview and transcription processes, to be followed by thematic analysis.

Results: Preliminary findings reveal that weight of care is a multidimensional driven by several intersecting factors. Systemic barriers like high cost and scarcity of PD medication, raise caregiver stress and are a primary driver of economic turmoil which often leads to a resource loss spiral. Perceived burden is also high when patients have high functional dependency for basic activities of daily living. Oftentimes, young adult caregivers and young-onset couples face educational and career interruptions. These challenges are deepened by support void, where a lack of emotional and financial buffers, alongside community stigma and self-isolation, leaves caregivers in a state of isolation.

Conclusion: Improving the quality of life for PD families requires policy-level interventions, including providing PD medications even in grassroot health facilities, inclusion of PD medications in national health insurance fund and decentralising neurological care to reduce the economic pressure of Kenyan households.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/lived-experiences-and-the-weight-of-parkinsons-caregiving-in-kenya/