Original Research

Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana

Maria Zuurmond, Janet Seeley, Tom Shakespeare, Gifty G. Nyante, Sarah Bernays
African Journal of Disability | Vol 9 | a705 | DOI: https://doi.org/10.4102/ajod.v9i0.705 | © 2020 Maria Zuurmond, Janet Seeley, Tom Shakespeare, Gifty G. Nyante, Sarah Bernays | This work is licensed under CC Attribution 4.0
Submitted: 04 February 2020 | Published: 27 November 2020

About the author(s)

Maria Zuurmond, International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, United Kingdom
Janet Seeley, Department of Global Health and Development, London School of Hygiene and Tropical Medicine, London, United Kingdom
Tom Shakespeare, International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, United Kingdom
Gifty G. Nyante, Department of Physiotherapy, Faculty Biomedical and Health Sciences, University of Ghana, Accra, Ghana
Sarah Bernays, School of Public Health, Faculty Medicine and Health, University of Sydney, Sydney, Australia


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Abstract

Background: Empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. However, it can still be a poorly understood concept in practice.

Objective: This article is an empirical analysis of the ‘empowerment journeys’ of caregivers participating in a community-based training programme in Ghana.

Method: In-depth interviews were conducted with 18 caregivers at three time points over 14 months. Thematic analysis was conducted on the full data set, with three representative case studies selected for more detailed analysis to illustrate the dynamism of time and context in shaping the empowerment journey.

Results: Our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. There were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. However, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. The support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues.

Conclusion: A richer and more nuanced understanding of caregiver empowerment in the community and family context can inform the wider discourse on disability. Guidelines on working with people with disabilities, and the role of empowerment, should not neglect the pivotal role of caregivers. There are important lessons to be learnt if we want to improve family-centred interventions and transform the lives of children with disabilities.


Keywords

caregiver; carer; children with disabilities; empowerment; support groups

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Crossref Citations

1. Exploring caregiver experiences of stigma in Ghana: They insult me because of my child
Maria Zuurmond, Janet Seeley, Gifty Gyamah Nyant, Marjolein Baltussen, Jedidia Abanga, Sarah Polack, Sarah Bernays, Tom Shakespeare
Disability & Society  first page: 1  year: 2020  
doi: 10.1080/09687599.2020.1851172