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The role of caregiver empowerment in service development for families raising children with developmental disabilities in Ethiopia and Argentina: A multiple case study design and comparative analysis
No full textBackground
Caregivers of children with developmental disabilities (DDs) often experience challenges such as stigma and social exclusion; and are bound by poverty and limited access to resources. Caregiver empowerment is proposed to help families raise their children as they wish to.
Objectives
i) Explore how caregiver empowerment may be achieved in two settings: Ethiopia and Argentina. ii) Investigate similarities and differences in perceptions of caregiver empowerment.
Methods
We conducted two case studies: in Ethiopia (63 interviews) and in Argentina (32 interviews), with participants comprising caregivers of children with DDs, clinicians, representatives of non-governmental organisations and local authorities. We used template analysis to compare data across the cases, using Murdoch’s (2016) context in complex interventions framework.
Results
We developed three themes at macro, meso, and micro levels of context: Societal factors influencing the caregiver experience; Caregiver empowerment through institutions and communities; and The challenges of the caregiver journey. Across the cases, families’ socio-economic status, stigma, and awareness about DDs and existing disability laws shaped how caregivers could support their child. Caregiver initiatives remained local and informal in Ethiopia, while in Argentina formalised caregiver organisations worked towards claiming their rights. In both countries, caregivers’ psychological resilience was difficult to achieve due to social exclusion, with challenges especially severe for single mothers.
Conclusions
Both Argentinian and Ethiopian stakeholders consider the goal of caregiver empowerment to be the removal of barriers that hinder caregivers from doing what they think is best for their child and family, on their own terms. This requires structural change to overcome social exclusion. Caregiver-focused interventions should build on expertise by experience to empower caregivers
Supplementary file 2 for “The role of caregiver empowerment in service development for families raising children with developmental disabilities in Ethiopia and in Argentina: A multiple case study design and comparative analysis”
No full textContextual information about Ethiopia and Argentin
Perspectives on advocacy for and inclusion of children with developmental disabilities in education in Ethiopia and Argentina: a comparative analysis
No full textSupplementary file 4 for “The role of caregiver empowerment in service development for families raising children with developmental disabilities in Ethiopia and in Argentina: A multiple case study design and comparative analysis”
No full textThe analytic process of the comparative analysi
Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia: a case study
No full textAbstract
Background
Caregivers of children with developmental disabilities (DDs) in Ethiopia experience stigma and exclusion. Due to limited existing services and substantial barriers to accessing care, they often lack support. Caregiver empowerment could be a pillar to address injustices that hinder their capacity to support their child as they would like. Little is known about what empowerment might achieve within service development for children with DDs in Ethiopia.
Methods
We explored the meaning and potential role of empowerment for caregivers raising a child with a DD and how empowerment was situated in relation to other priorities in service development. This was a qualitative phenomenological study. Semi-structured interviews were conducted in Amharic (N=19) and English (N=44) with caregivers of children with a DD, community-based health extension workers, representatives of non-governmental organisations working with families with DDs, and representatives of local authorities in health, education, and social care. Data were analysed thematically.
Results
Three main themes were developed: “Barriers to exercising agency as a caregiver in poverty”; “Whose decision is it to initiate empowerment?”; and “Supporting caregivers on their own terms using support groups”. Caregiver capacity to do what they thought was best for their child was undermined by poverty, a sense of hopelessness, experience of domestic abuse and multiple burdens experienced by those who were single mothers. Caregivers were nonetheless active in seeking to bring about change for their children. Caregivers and professionals considered support groups to be instrumental in facilitating empowerment. Participants reflected that caregiver-focused interventions could contribute to increasing caregivers’ capacity to exercise their agency. A tension existed between a focus on individualistic notions of empowerment from some professionals compared to a focus on recognising expertise by experience identified as vital by caregivers. Power dynamics in the context of external funding of empowerment programmes could paradoxically disempower.
Conclusion
Caregivers of children with DDs in Ethiopia are disempowered through poverty, stigma, and poor access to information and resources. The concept of caregiver empowerment should be theorised and operationalised based on caregivers’ terms. This requires supporting initiatives that caregivers value and promoting service development efforts that caregivers can initiate and pursue
A rapid review on developmentally appropriate online mental health content for young people
No full textOrygen has been requested by WHO to develop a background paper to act as a briefing document ahead of a global consultation in relation to developmentally appropriate online mental health content for young people under 13 years old and 13-17 years old
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