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

Karen Bunning, Joseph Gona, Charles Newton, Sally Hartley

Research output: Contribution to journalArticlepeer-review

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. A programme was set up in 2008-2021 to investigate and address these difficulties in Kilifi County, Kenya.
Methodology: The programme used mixed methods through a series of interconnected studies, starting with (i) a situation analysis, followed by a (ii) 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: (iii) disability awareness training to community groups; and (iv) empowering self-help groups for caregivers of children growing up with disabilities.
Findings: (i) 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. (ii) 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. (iii) Disability awareness training led by persons with lived experience of disability showed positive changes to the views, values and attitudes of established community groups. (iv) 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.
Original languageEnglish
JournalTizard Learning Disability Review
Publication statusAccepted/In press - 30 Nov 2021

Keywords

  • low-income
  • caregivers
  • developmental disabilities
  • community

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