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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

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Authors

Natasha Fothergill-Misbah

Suzanne Moffatt

Hellen Mwithiga

Richard Walker



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

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