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Family Support in Kinshasa, Democratic Republic of the Congo

Journal of Policy and Practice in Intellectual Disabilities

Published online on


Family support consists of formal (i.e., provided by professionals) and informal (i.e., provided by family and friends) assistance that responds to families’ emotional, physical, material/instrumental, and informational needs and is intended to enhance the quality of life of the family member with a disability and the family unit. The authors used a case study approach to examine a voluntary self‐help association to answer the questions: (1) what aspects of local self‐help entity provide effective and meaningful support to families who have a member with intellectual and developmental disability? and (2) what makes this support effective and meaningful? This study entailed a secondary analysis of data (interviews, observations, documents) collected over a 7‐month period in Kinshasa, DRC, to describe and examine a DRC‐based local voluntary self‐help association for family members of people with intellectual and/or developmental disabilities. The self‐help association examined provides emotional, physical, material/instrumental, and informational support to local families. Key reasons for the association's success include that it is grounded in local realities and led by charismatic, multidisciplinary, committed leaders. Key challenges of the association relate to a lack of sustainable funding and limited scope of impact outside of Kinshasa. The authors conclude that families themselves are often the first creators and providers of family support in conflict and postconflict contexts, where state priorities for family support of carers of persons with disabilities are often low or nonexistent. This case provides empirical evidence that families are currently self‐organizing to meet disability support needs in Kinshasa. As developing nations such as the DRC begin to structure more formal state programs for family support, they would be wise to partner with or formally engage existing experienced family associations to provide meaningful and effective disability‐related support.