Parents’ lived experiences of raising children with hidden disabilities

Abstract

This study explores the lived experiences of parents raising children with hidden disabilities, investigating their reactions upon learning about their children’s diagnoses, the struggles they encounter, and the enablers which facilitate their journey. Given the qualitative nature of this study, interpretative phenomenological analysis (IPA) was used, with a special focus on the social model of disability. Emancipatory principles were also utilised throughout the research process whenever possible. Four semi-structured interviews were conducted with four mothers of children with hidden disabilities. The findings of this study were analysed using the four iterative stages as listed by Biggerstaff and Thompson (2008). Five superordinate themes were identified: (a) recognising and diagnosing the hidden disability; (b) making peace with the diagnosis: going back and forth; (c) beyond the diagnosis: impacts on personal and family life; (d) it takes a village: support systems for raising children with hidden disabilities; and (e) more unseen struggles: the barriers parents face while raising their child with hidden disabilities. Participants described the challenges they encounter while bringing up their children with hidden disabilities, highlighting the importance of resilience and adequate support networks. They also stressed the need for greater awareness about these type of hidden disabilities and timely interventions by medical professionals to ensure that their children are eligible for the required support. Despite these challenges, they reflected their unwavering love and commitment to their children’s well-being. The implications of these findings emphasise the need for policy changes aimed at reducing diagnostic delays, improving access to support, providing psychological support to parents, and fostering public awareness about hidden disabilities. In conclusion, this study advocates for societal changes to better support both parents of children with hidden disabilities as well as the children themselves.