Caregivers' experiences of raising children with intellectual disability in Umgeni Municipality, KwaZulu-Natal, South Africa

Abstract

In the South African context, there is little research on caregivers' experiences of raising children with intellectual disabilities (ID). About  12% of the population of people with disability have ID, which ranges from mild to profound and are cared for by their families. Raising a  child with ID brings significant life challenges to the entire family. The study aimed to explore caregivers' experiences of raising children  with ID. Sixteen caregivers of children with an ID were purposefully selected using a qualitative phenomenological research design. A  semi-structured interview guide was used to conduct in-depth one-to-one interviews, which were audio-recorded, transcribed, coded,  and translated from IsiZulu to English. Using a thematic approach, the themes and subthemes related to the caregivers' experiences of  raising a child with an ID were explored. The majority of caregivers face untold economic difficulties. Providing a child's necessities such as, food, nappies, medication, and transport for medical appointments is costly, and causes financial pressure on the caregivers. Most  caregivers have inadequate support system and live in isolation with poor social life. Emotional and psychological distress is high among  caregivers of children with ID. Religion, support groups, family support, counseling, and traditional healing are the commonly used  coping strategies. The multiple challenges experienced by caregivers underscore the need for inter-departmental collaboration to  develop community support structures and strengthen policies and interventions which aim to address the needs of caregivers raising   children with ID.