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

African Journal of Disability

Field Value
Title Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
Creator Zuurmond, Maria Seeley, Janet Shakespeare, Tom Nyante, Gifty G. Bernays, Sarah
Subject disability, inclusive development caregiver; carer; children with disabilities; empowerment; support groups
Description 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.
Publisher AOSIS
Contributor Maria Zuurmond Janet Seeley Tom Shakespeare Gifty Nyante Sarah Bernays
Date 2020-11-27
Type info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion — qualitative research
Format text/html text/xml text/xml application/pdf
Identifier 10.4102/ajod.v9i0.705
Source African Journal of Disability; Vol 9 (2020); 9 pages 2226-7220 2223-9170
Language eng
Coverage Africa — —
Rights Copyright (c) 2020 Maria Zuurmond, Janet Seeley, Tom Shakespeare, Gifty G. Nyante, Sarah Bernays