Abstract
Bringing up a child with disabilities in a low-income setting is challenged by inadequate resources, limited psycho-social support and poverty. Not surprisingly, many caregivers experience fatigue, distress and isolation. To address and investigate these issues, action was taken to set up twenty self-help groups focusing on caregiver empowerment. A realist evaluation design was adopted to evaluate impacts associated with the self-help process and to identify mechanisms determining the outcomes. Monthly monitoring visits were conducted to the groups during a ten-month set-up period, at the end of which eleven active groups remained, nine having dissolved due to disputes, corruption and extreme environmental conditions. A facilitated intervention was delivered to the active groups (N = 154) over a six-month period. The members were guided to review and discuss topics such as economic empowerment, personal situation, peer support, community inclusion, access to health and education. Evaluation employed mixed methods using questionnaires (n = 75) and semi-structured interviews (n = 36) pre- and post-intervention. At baseline, the burden of caregiving was characterised by aloneness, challenges, stigma and discrimination. Post-intervention, caregiver agency was defined by togetherness, capacity-building, acceptance and well-being. Significant impacts associated with caregiver perceptions included increased social support, reduced severity of child’s disability and decreased effects of extrinsic factors affecting the caregiver’s role. Mechanisms of ‘handling goods and money’ and ‘social ties and support’ appeared to underpin the outcomes. Caregiver empowerment was associated with newly developed skills, social connectedness and resource mobilisation. Documentation of group processes contributes to the evidence on community-based inclusive development.
Highlights
The link between disability and poverty has been established unequivocally, with a positive relationship more likely in low-middle income countries (LMICs) of the Middle East & North Africa, and East Asia and the Pacific [1,2]
It was estimated that approximately 95% of 52.9 million children below 5 years with developmental disabilities resided in LMICs
The current study focused on the impacts associated with caregiver participation in SHGs and the underlying mechanisms of the SHG process, through address of two research questions: 1. What changes are associated with empowering self-help groups for caregivers of children with disabilities? 2
Summary
The link between disability and poverty has been established unequivocally, with a positive relationship more likely in low-middle income countries (LMICs) of the Middle East & North Africa, and East Asia and the Pacific [1,2]. It was estimated that approximately 95% of 52.9 million children below 5 years with developmental disabilities resided in LMICs. More recently, it was estimated that approximately 95% of 52.9 million children below 5 years with developmental disabilities resided in LMICs This showed a lack of significant improvement to the burden of developmental disabilities compared to similar estimates in 1990 [4]. It is the mother or grandmother who performs the role of primary caregiver, often in circumstances where the husband is not present at home [5], meeting the child’s daily living needs in circumstances of limited financial resources [2], scarce information about causation [4] and poor access to rehabilitation and health care [6,7,8,9]. Caregiver capabilities, including educational experience and autonomous decision-making, were positively correlated with active participation in groups designed to promote self-help in Nepal [14]
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