Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana.
caregiver
carer
children with disabilities
empowerment
support groups
Journal
African journal of disability
ISSN: 2223-9170
Titre abrégé: Afr J Disabil
Pays: South Africa
ID NLM: 101623460
Informations de publication
Date de publication:
2020
2020
Historique:
received:
04
02
2020
accepted:
23
09
2020
entrez:
23
12
2020
pubmed:
24
12
2020
medline:
24
12
2020
Statut:
epublish
Résumé
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. This article is an empirical analysis of the 'empowerment journeys' of caregivers participating in a community-based training programme in Ghana. 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. 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. 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.
Sections du résumé
BACKGROUND
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
OBJECTIVE
This article is an empirical analysis of the 'empowerment journeys' of caregivers participating in a community-based training programme in Ghana.
METHOD
METHODS
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
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
CONCLUSIONS
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.
Identifiants
pubmed: 33354533
doi: 10.4102/ajod.v9i0.705
pii: AJOD-9-705
pmc: PMC7736676
doi:
Types de publication
Journal Article
Langues
eng
Pagination
705Informations de copyright
© 2020. The Authors.
Déclaration de conflit d'intérêts
The authors have declared that no competing interests exist.
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