The support needs of families raising children with intellectual disability

Abstract

Background: The deinstitutionalisation of children suffering from intellectual disability (ID) is a global phenomenon. Most families raising such children experience a range of difficulties and require supportive systems to cope with physical, social and mental demands in a home environment.

Objectives: The aim of this study was to explore and describe the support needs provided to families raising children with ID in the Capricorn District of the Limpopo province, South Africa.

Method: In-depth individual interviews and focus group discussions were conducted with 26 families directly affected by the experience of caring for and raising children with ID in Capricorn District of the Limpopo province. Inductive thematic analysis was used to identify, categorise and organise the responses of the participants converted into intelligible statements with the assistance of Atlas. Ti version 8.

Results: Participants identified support needs on information regarding care and management of the children with intellectual disabilities, professional collaboration on safety of the children, community involvement on the rearing of the children and improvement of their living conditions as most of the families and households were female-headed, of low income and needed further monetary support. Overall, the totality of challenges, demands and inadequate support services coalesced in marginalisation of children with ID and their families.

Conclusion: Families raising children with ID are diverse and complex with unique support needs. Therefore, a multilayered approach should be taken to address the concerns and improve the families’ quality of life. A foreseen challenge would be to secure the involvement of the stakeholders representing a variety of sectors, organisations and services.