The role of support groups in the management of Parkinson’s disease in Kenya: Sociality, information and legitimacy

Fothergill-Misbah, Natasha; Moffatt, Suzanne; Mwithiga, Hellen; Hampshire, Kate; Walker, Richard

Abstract

Parkinson’s disease (PD) is the second most common neurodegenerative disease globally. It is a progressive neurological disorder which can lead to a decline in wellbeing and quality of life for people living with PD (PwP) and their families/caregivers. However, little is known about the experience of PwP in low- and middle-income countries. In high-income countries, the benefits of support groups in providing social support, preventing social isolation and normalising the PD experience have been established. As part of a wider ethnographic study over 10 months, we explored the role of support groups in the management of PD in Kenya, sub-Saharan Africa. Fifty-five PwP and 23 informal family caregivers took part, and observations took place over ten support group meetings. Both positives and drawbacks were identified. The groups played a role in filling in gaps in information and services that the healing landscape in Kenya was unable to provide, while acting as an important source of care and support for PwP and caregivers, enabling ‘sociality’ and legitimacy. Drawbacks included limited reach and accessibility, ‘social comparisons’, and seeing the severity of progressed PD in others. Findings suggest PD support groups could become important components within resource-constrained healthcare settings.

Citation

Fothergill-Misbah, N., Moffatt, S., Mwithiga, H., Hampshire, K., & Walker, R. (2022). The role of support groups in the management of Parkinson’s disease in Kenya: Sociality, information and legitimacy. Global Public Health, 17(8), 1773-1783. https://doi.org/10.1080/17441692.2021.1954227

• Journal Article Type: Article
• Acceptance Date: Jun 28, 2021
• Online Publication Date: Jul 13, 2021
• Publication Date: 2022
• Deposit Date: Nov 18, 2021
• Publicly Available Date: Nov 18, 2021
• Journal: Global Public Health
• Print ISSN: 1744-1692
• Electronic ISSN: 1744-1706
• Publisher: Taylor and Francis
• Peer Reviewed: Peer Reviewed
• Volume: 17
• Issue: 8
• Pages: 1773-1783
• DOI: https://doi.org/10.1080/17441692.2021.1954227
• Public URL: https://durham-repository.worktribe.com/output/1222713