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

Abstract

Purpose Raising 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. Methodology The 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. Findings The 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. Originality The programme narrative demonstrates a rationalised and evidence-based process for community-based inclusive development that is low cost, culturally acceptable, with potential for sustainability.

Women in Health and their Economic, Equity and Livelihood statuses during Emergency Preparedness and Response (WHEELER) protocol: a mixed methods study in Kenya

“…Kilifi County is situated in the Coastal region, with a population of 1 453 787 in a largely rural area, 60 km north of Mombasa County 7. One of the poorest counties in Kenya, it has a 71.4% poverty level: the prepandemic average income per person was 1000 Kenya Shillings (approximately USD 10 using the 2019-dollar rate) per month 22. The county has a total of 145 government-owned health facilities (1 county referral hospital, 4 subcounty hospitals and 140 dispensaries and health centres) with 1466 paid HCPs and 3437 CHVs.…”

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

“…These examples demonstrate the powerful effect of parental advocacy groups. Equally important is the empowerment and advocacy of disability self-advocates themselves and this may be a natural next step to the work of Bunning et al (2021). There is a large and influential disability and neurodiversity self-advocacy movement within the UK and USA, facilitated by social media, which is bringing about important changes (Leadbitter et al, 2021).…”

“…Economic empowerment was emphasised as a critical component throughout the collaborative and participatory intervention development process reported by Bunning et al (2021) and this is an aspect of empowerment not usually seen within HIC intervention efforts. Economic empowerment of caregivers and disabled people brings obvious material benefits and can also reduce stigma and improve status and participation.…”

“…Low-and middle-income countries-high-income countries research partnerships Bunning et al (2021) described a programme of work spanning over a decade and reliant on an active LAMIC-HIC research partnership. The establishment of genuinely equitable and respectful partnerships is key to finding long-term contextual solutions to universal problems, to support the capacity building of LAMIC-based researchers and to generate knowledge in and for the global south.…”

“…those with less developed health and education systems. The programme of research described by Bunning et al (2021) in this issue is therefore a welcome addition to the growing literature from LAMIC settings, and is to be commended for its holistic approach to identifying the needs of an underserved communityfamilies living in the Kilifi region of Kenya. The systematic, step-wise, collaborative and grounded approach to developing and evaluating measures to address those needs is particularly noteworthy, and includes raising community awareness, reducing stigma, and establishing structures to empower caregivers and disabled young people.…”