Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms

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. PLOS ONEPLOS ONE | https://doi.org/10.

Needs of families of children with intellectual and developmental disabilities in Addis Ababa

“…Literature on the continent of Africa (and globally) has identified a number of strategies for how families can be better supported. These include parent- caregiver- or family- advocacy and support groups, family income generation and poverty alleviation and community mobilisation (Aldersey, Turnbull, & Turnbull 2016 ; Bunning et al 2020 ; McConkey, Kahonde & McKenzie 2016 ; McKenzie & Chataika 2018 ). Studies, such as that by Marimbe et al ( 2016 ) in Zimbabwe examined needs for family caregivers of people with mental health issues and found that peer support groups provided families with opportunities to support one another and enhance coping abilities (Marimbe et al 2016 ).…”

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

“…This is an important element that could be strengthened within the future development of our programme. A study of self-help groups for caregivers of children with disabilities in Kenya also demonstrated that caregiver empowerment was associated not only with newly developed skills but also social connectedness and resource mobilisation (Bunning et al 2020 ).…”

Commentary on “Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya”

“…Home-grown approaches are developed bottom-up within the context in which they will be implemented or evaluated. Bunning and colleagues illustrate a novel combination of both approaches: the communication-focused intervention delivered to parents consisting of intervention approaches developed and used in HIC, such as objects of reference and intensive interaction (Bunning et al, 2014); and the caregiver empowerment groups responded to a locally identified need and were developed collaboratively within and for the target community (Bunning et al, 2020).…”