Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation.

Joseph K Gona,Charles Newton,Karen Bunning,Sally Hartley

doi:10.4102/ajod.v9i0.650

Abstract

Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya. To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status. Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths-weaknesses-opportunities-threats to review the groups at the end of the 10-month set-up period. Recruitment resulted in registration of 254 participants to 18 groups - two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in 'merry-go-round' activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats. Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

Highlights

Children represent approximately 50% of the general population, 5% of whom are estimated to have a disability (World Health Organisation [WHO] 2011)
It was expected that the development of 20 self-help groups’ (SHGs) in different geographical locations would be influenced by the experiences, beliefs and attitudes of the participants; the available opportunities; access to resources relevant to the context; and environmental conditions
Characteristics associated with the collapse of the inactive groups included the following: poor leadership, inconsistent attendance and failure to comply with monitoring visit requirements; poor availability of key skills, such as http://www.ajod.org numeracy and literacy; interference from former members and others outside of the group; and harsh environmental conditions affecting livestock and access to water

Summary

Introduction

Children represent approximately 50% of the general population, 5% of whom are estimated to have a disability (World Health Organisation [WHO] 2011). About 95% of 52.9 million children below 5 years with developmental disabilities were estimated to reside in low- and middle-income countries (LMICs) (Olusanya 2018). The basic needs of the child growing up with a disability, such as shelter, nutrition, clothing, education, health and emotional well-being, are catered for by the caregiver, usually the mother. In LMICs, paucity of information concerning the causes of disability, for example, Kenya (Bunning et al 2017), limited support services and poor access at community level, makes the caregiver’s role both challenging and onerous (Gona et al 2018). Wide variation in rehabilitation services has been reported across the African continent, including poor coordination of delivery, restricted access to services at community level and a continuing need for development work (WHO 2011). We examined the development of self-help groups for caregivers in a rural part of Kenya

Objectives

Methods

Results

Discussion

Conclusion