Psychosocial factors affecting the mental health of parents caring for children with intellectual disabilities in Benoni, Gauteng

Abstract

Intellectual disabilities are prevalent across the globe. Children with intellectual disabilities require specialised services from a multidisciplinary team to ensure optimal development and quality of life. Traditionally these services focus on children themselves and not their family and caregivers. Numerous studies have established the link between parental well-being and the child's well-being, emphasising that the services reaching beyond the child to the family of children with intellectual disability will benefit the child, sibling and parents, ensuring quality of life for all members. The goal of the study was to explore the psychosocial factors affecting the mental health of parents caring for children with intellectual disability in Benoni, Gauteng. Using the ecosystem perspective as a theoretical framework, the researcher aimed to explore the parent's experience of the psychosocial factors affecting their mental health.

The researcher utilised a qualitative approach with an instrumental case study, which allowed the researcher to explore the phenomenon of psychosocial factors affecting the mental health of parents caring for children with intellectual disabilities in-depth. The study population was parents caring for their children with intellectual disabilities under the age of 18 years, who are utilising the services of Apricot Tree Centre in Benoni. One-on-one semi-structured interviews, an interview schedule and recordings were used to collect data for this study. The interviews were transcribed, and Reflexive Thematic Analysis was used to inductively identify themes and sub-themes from the data to answer the following research question: What are the psychosocial factors affecting the mental health of parents caring for children with ID in Benoni, Gauteng? The findings revealed that factors impacting the mental health of participants varied throughout the different phases of diagnosis and the mental distress often starts long before diagnosis. The nuclear family are the most profoundly affected by caring for a child with intellectual disability, providing the most significant challenges and most significant support. The caregiver's responsibility profoundly impacts the mental health of participants and is the most likely factor to lead to burnout and a mental health crisis. The loss of parental roles due to overwhelming caregiver responsibility significantly impacts the participants' view of self, leaving them vulnerable to feelings of loss and failure. This, together with societal views and stigmatisation shapes the participants' core beliefs. Various external structures such as family, religion, culture and society intensify the pressure and mental health challenges for the participants, as stigmatisation and cultural values leave participants feeling isolated and alone, negatively impacting their mental health.

Despite all these challenges participants have achieved a sense of meaning and purpose in caring for their child with intellectual disabilities. Finding meaning and purpose, reframing hopes and dreams, drawing on support, spirituality and effective coping strategies, contribute to the mental health resilience of participants.

The recommendations that emerged from this study include: providing specialised mental health support for parents caring for children with intellectual disabilities; adopting a multidisciplinary approach in service delivery and intervention that supports the entire family of children with intellectual disabilities; advocacy and education within communities, churches, and families to facilitate inclusive mindsets, not just policies, around intellectual disabilities; and implementing early interventions to support families caring for children with intellectual disabilities.

Viewing this study as part of a larger study from the MSW Healthcare 2023 group, will allow a broader picture of this phenomenon across different populations in different locations in South Africa. Although this study was successful in meeting the aims and objectives, further research on this phenomenon will be valuable to social work services. Research into the impact of behavioural challenges in children with intellectual disabilities on parental isolation, and the lack of informal social support is recommended. Furthermore, the researcher recommends exploring the role of early psychosocial interventions in caring for children with intellectual disabilities to improve coping and resilience in these parents and understand the specialized mental health and support services that families caring for children with intellectual disabilities require.