Needs of families of children with intellectual and developmental disabilities in Addis Ababa

Abstract

Background: Family support is an essential component of caring for children with intellectual or developmental disability (IDD), however, specific family support needs in developing countries, such as Ethiopia, have received minimal attention in the literature to date.

Objectives: This study sought to understand the specific disability-related support needs of families with children with IDD in Addis Ababa, Ethiopia. We answered the following questions: (1) How do family members of children with IDD in the Mekaneyesus Centre in Addis Ababa currently meet their disability-related support needs?; (2) what are these family members’ most pressing unmet disability-related needs? and (3) how do family members perceive their capacity to meet their support needs?

Method: This study drew from an exploratory qualitative descriptive approach with 16 family members of children with IDD, recruited from a centre for children with IDD. We conducted semi-structured interviews in Amharic. We transcribed and translated interviews into English and guided by a conceptual framework for family support from Kyzar et al. (2012), we thematically analysed the data.

Results: Participants identified instrumental and emotional needs to be most prominent, with additional discussion around various physical and informational needs. Participants identified childcare as the most significant unmet need, which resulted in the loss of various important life roles. The participants discussed major sources of support coming from spirituality, family members and community. Stigma emerged as a critical family support theme external to the Kyzar et al. (2012) classifications of family support.

Conclusion: Although family members are adapting and responding to meet their needs in the best way they can, additional support, particularly related to childcare and future planning, is essential.