Challenges of Indian parents caring for adult children with intellectual disabilities

Abstract

Intellectual disability is a lifelong condition that brings with it many medical, psychological, social and cultural challenges that affect parents caring for their adult children in their family home. Therefore, the present study is aimed at identifying these challenges so that services and programmes can be developed and implemented. This, as a result, will enhance service delivery to ensure a better quality of life for both parents and their children. The goal of the study was to explore and describe the challenges of parents caring for adult children with intellectual disabilities within the Indian community in Laudium. The researcher conducted the study using a qualitative research approach. This type of research was applied in nature and a collective case study design was utilised. The sampling technique chosen was purposive and included snowballing as a secondary technique. The 12 participants that were selected met the following criteria of the present study: a South African citizen, an Indian from any religion, a father or mother of an adult child or children (20 years and older) with an intellectual disability, an adult child who attends the day care centre at the Laudium Mental Health Society and/or a parent who accessed services such as counselling/support at the Laudium Mental Health Society or whose child accessed these services. The researcher conducted semi-structured one-to-one interviews because this type of data-collection method provides more flexibility for both the researcher and the participants regarding the interview schedule. The present study found that parents displayed a fair insight into and understanding of their children’s intellectual disabilities despite not receiving a formal diagnosis. There are many medical challenges for parents when living with adult children with intellectual disabilities such as associated health conditions, co-morbidities and psychiatric disorders. The present study further found that the emotional experiences encountered by parents caring for adult children with intellectual disabilities ranges from positive emotions (hope and acceptance) to negative emotions (despair and hurt). Many parents chose to be self-employed because it offered flexible working hours in order to take care of their children with intellectual disabilities. The parents and adult children with intellectual disabilities experienced a lack of a social and community life because of behavioural problems, lack of facilities available for children with physical disabilities as well as stigma within the community. The most supportive system parents experienced when caring for adult children with intellectual disabilities is the immediate family members such as spouses and other children. Furthermore, the parents require assistance with regards to physical care when caring for their adult children with intellectual disabilities because they are getting older. Despite receiving a disability grant, parents required an additional source of income to pay for special equipment, medical expenses, therapies, clothing, food and toiletries for their adult children with intellectual disabilities. Due to racial segregation, parents could not access special schools in the community for their children with intellectual disabilities. The parents hoped that their adult children with intellectual disabilities would die before them. The families of adult children with intellectual disabilities believed that cultural influences were the cause of the intellectual disability. In conclusion, there are many biopsychosocial challenges that parents faced when caring for adult children with intellectual disabilities. Parents who are middle aged or elderly are in need of care and support themselves but they find themselves still providing care and support to their children and therefore various interventions within the community are needed to support and promote the well-being of the parents and their children.