A Call for Re-visioning Participation: Realist Review of Participation in Community-based Rehabilitation for the Inclusion of Children with Disabilities in Low-Income and Low-Middle-Income Countries

Abstract

Background and Objective. Community-based rehabilitation (CBR) represents a multifaceted social intervention designed to tackle issues related to access, equity, and service quality. Within the framework of CBR, participation stands as a pivotal principle, albeit one that frequently goes unnoticed, particularly concerning children with disabilities. Consequently, this realist synthesis embarks on an exploration of the present landscape, participation mechanisms, and resulting outcomes within CBR initiatives tailored for children with disabilities in low and low-middle-income countries.

Methods. The realist approach is utilized to explain the causal mechanisms and explore the context, mechanism, and outcome of participation in CBR programs. A systematic search was conducted across ten databases up to April 2021. Studies were included if they involved children with disabilities aged 17 years and below, were implemented in World Bank-classified low-income or low-middle-income countries, discussed implementation mechanisms and community participation, and described outcomes. No language restrictions or publication type limitations were applied. The search process employed double screening of title, abstract, and full-text levels, followed by a snowballing technique. Quality assessment followed the RAMESES standards for realist reviews. Data extraction and analysis yielded context-mechanism-outcome configurations.

Results. Thirteen articles were included in the synthesis, from which three context-mechanism-outcome configurations were identified: (1) family-facilitated intervention through training in the immediate environment of children with disabilities leads to knowledge translation of caregivers, (2) inaccessible healthcare services require establishing a referral system and augmenting human resource to ensure the system’s capacity to accommodate the magnified need, and (3) established collaboration of researcher, professionals, and community with stakeholder involvement in the CBR management leads to program adoption and documented effectiveness. Both training and establishing referral systems as implementation mechanisms pose sustainability challenges due to dependency on funding. Overall, participation as a form of agency is more often an implied concept. Training is a common mechanism of implementation, where women play a critical role as proxies of children with disabilities, being their caregivers and advocates. Positive and negative outcomes focus on the condition of children with disabilities and the trainees’ knowledge and awareness.

Conclusion. A critical analysis of children's and community's participation in the context, mechanism, and outcome unravels the non-participation of children with disabilities and tokenism of the community stakeholders in the CBR programs. Maximizing the contribution of children with disabilities and community stakeholders is called for, aligned with the ladder of participation, toward their democratic participation. Study limitations include the paucity of published CBR programs reporting participation mechanisms in low and low-middle-income countries and the exclusion of studies from economically disadvantaged communities in high-income countries.