Perception and experience of social support for parents of neurodiverse children and adolescents in South Africa

Abstract

There has been a global increase in research on neurodiversity; however, limited research has examined the social support available to families of neurodiverse children and adolescents, particularly in South Africa. Families face persistent challenges, including limited awareness, cultural stigma and barriers to accessing appropriate support. This qualitative study explored the perceptions and experiences of parents of neurodiverse children and adolescents regarding social support in South Africa. An exploratory research design was employed, with 12 participants recruited from an academic hospital in the Eastern Cape. Data were collected through semi-structured interviews and analysed using thematic analysis, guided by Bronfenbrenner’s Ecological Systems Theory. The study complied with the ethical requirements of the Humanities and Social Sciences Research Ethics Committee (HSSREC), the Protection of Personal Information (POPI) Act 4 of 2013, and the University of the Western Cape’s Research Policy and Data Management Policy. Findings highlighted the importance of both emotional and tangible forms of support, as well as the influence of parents’ relationships within their communities and the healthcare sector. Participants’ experiences of support were often constrained by cultural misconceptions, limited awareness and a lack of formal social support structures. The findings emphasise the vital role of accessible informal and formal support in promoting the psychological wellbeing of parents of neurodiverse children and adolescents