Abstract
PurposeRaising a child with learning and developmental disabilities in a low-income setting is challenged by inadequate resources, limited support and poverty. The impacts on caregivers include fatigue, distress and isolation. The purpose of this paper is to report on a programme (2008-2021) that was set up in Kilifi County, Kenya to investigate and address these difficulties.MethodologyThe programme used mixed methods through a series of interconnected studies, starting with a situation analysis, followed by a home-based intervention where the caregiver served as agent for change using augmentative and alternative communication (AAC) methods. This was followed by two community-based inclusive development initiatives: disability awareness training to community groups and empowering self-help groups for caregivers of children growing up with disabilities.FindingsThe situation analysis revealed scarce support services for caregivers and children with learning and developmental disabilities, with report of limited resources, inadequate coverage and poor professional practice. A home-based, AAC intervention was associated with improved caregiver well-being, significant positive changes to caregiver perceptions of the child’s communication and some expansion to the child’ social activities. However, questions around sustainability persisted. Disability awareness training led by persons with lived experience of disability showed positive changes to the views, values and attitudes of established community groups. Caregiver participation in self-help groups was associated with their greater personal agency, perceptions of increased social support and reduced severity of child’s disability.OriginalityThe programme narrative demonstrates a rationalised and evidence-based process for community-based inclusive development that is low cost, culturally acceptable, with potential for sustainability.
Highlights
A decade ago, the World Report on Disability estimated that 80% of the 150 million children with disability worldwide were to be found in resource-poor regions of the world (WHO, 2011)
More recent estimates report that 95% of 52.9 million children below five years with developmental and learning disabilities reside in low to middle income countries (LMICs)
The aim of this paper is to provide a critical narrative to a research and development programme that moves from an understanding of the existing situation for caregivers and their children with developmental disabilities, towards intervention approaches that build on the assets of the community
Summary
The development potential of children growing up with disabilities continues to be neglected. Our findings revealed workforce deficiencies in health and educational provision, poor attendance of appointments by caregivers and their children, poor access at a community level compounded by inadequate transport systems (Bunning et al, 2014a, 2014b, Gona, 2014) and sub-optimal practice in the area of therapy for promoting speech, language and communication development (Bunning et al, 2013). Post-intervention gains included a greater sense of well-being among the caregivers (Authors et al, 2013), who perceived their child’s disability as less severe with a reported increase in the child’s community participation (Bunning et al, 2014a, 2014b, Gona, 2014) Despite such positive outcomes, sustainability of approach was a concern because the intervention design relied on the professional skills of the researchers and a small budget to purchase AAC materials locally.
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