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

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 c...

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Autores principales: Zuurmond, Maria, Seeley, Janet, Shakespeare, Tom, Nyante, Gifty G., Bernays, Sarah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: AOSIS 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7736676/
https://www.ncbi.nlm.nih.gov/pubmed/33354533
http://dx.doi.org/10.4102/ajod.v9i0.705
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author Zuurmond, Maria
Seeley, Janet
Shakespeare, Tom
Nyante, Gifty G.
Bernays, Sarah
author_facet Zuurmond, Maria
Seeley, Janet
Shakespeare, Tom
Nyante, Gifty G.
Bernays, Sarah
author_sort Zuurmond, Maria
collection PubMed
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.
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spelling pubmed-77366762020-12-21 Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana Zuurmond, Maria Seeley, Janet Shakespeare, Tom Nyante, Gifty G. Bernays, Sarah Afr J Disabil Original Research 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. AOSIS 2020-11-27 /pmc/articles/PMC7736676/ /pubmed/33354533 http://dx.doi.org/10.4102/ajod.v9i0.705 Text en © 2020. The Authors https://creativecommons.org/licenses/by/4.0/ Licensee: AOSIS. This work is licensed under the Creative Commons Attribution License.
spellingShingle Original Research
Zuurmond, Maria
Seeley, Janet
Shakespeare, Tom
Nyante, Gifty G.
Bernays, Sarah
Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
title Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
title_full Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
title_fullStr Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
title_full_unstemmed Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
title_short Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana
title_sort illuminating the empowerment journey of caregivers of children with disabilities: understanding lessons learnt from ghana
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7736676/
https://www.ncbi.nlm.nih.gov/pubmed/33354533
http://dx.doi.org/10.4102/ajod.v9i0.705
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