A capacity-building intervention for parents of children with disabilities in rural South India

Abstract

Background

A disability service organization piloted a parent capacity-building intervention for parents of children with developmental disabilities in rural South India.

Aims

To examine the impact of this parent capacity-building group intervention on parent empowerment, peer support, social inclusion, advocacy skills, and the factors influencing these outcomes.

Methods and Procedures

A qualitative study recruited 37 participants from 17 parent groups through convenience sampling. Six focus groups occurred six months post the start of this intervention and explored these parents’ experiences with the groups and their perceived impacts.

Outcomes and Results

Qualitative analysis yielded four main themes and corresponding sub-themes: peer support (feeling peaceful and supported, building self-efficacy), social inclusion (space to share, acceptance and identity), knowledge sharing (increasing awareness, accepting advice), and advocacy (building confidence, making requests). Participation in parent groups provided participants with opportunities to find peer support, utilize knowledge sharing, feel socially included, and build advocacy skills.

Conclusions and Implications

This study provides a greater understanding of the impact and benefits of parent capacity-building interventions in low-resource settings. Results will improve this intervention and guide other organizations in creating similar programs.

What this paper adds

This paper adds perspectives of parents who are caregivers of children with developmental disabilities in rural South India. More specifically, this paper highlights the impact of a parent-focused intervention in group settings in both rural and urban areas. Parent support group interventions are not common in India and low- and middle-income countries and there is a paucity of literature describing these interventions and their impact. In this study, parents described a need for multifaceted interventions to support their child in the community. These parent groups provided space for caregivers of children with developmental disabilities to make connections, feel validated, and grow confidence to utilize new knowledge or advice shared by other parents to further enhance their lives. Further, parent-group settings provide opportunities to build advocacy skills through timely discussions. Parents reported an increase in feelings of acceptance within the group itself but not within the wider community. This highlights the need for involving the wider community in interventions to promote integration for families with children with disabilities.