The Disclosure Process and its Impact on South Asian Families with a Child with Severe Intellectual Disabilities

Abstract

Background Although several research studies have investigated parental experiences of the disclosure process in White families with a child with severe disabilities, little work has focused on the experiences of South Asian families.Materials and methods This study aimed to provide a rich picture of the disclosure experiences of South Asian parents of a child with severe intellectual disabilities, using semi‐structured qualitative interviews with 26 parents over two time points, and structured quantitative interviews with 136 parents.Results Parents reported variable experiences of the disclosure process, with many parents experiencing disclosure in the wrong language for them and most parents reporting little post‐disclosure support. Parents identified good practice in disclosure as prompt disclosure in the appropriate language, with the partner present (where possible), with emotional support as part of the process, with clear and practical information, and linked to post‐disclosure support from a keyworker.Conclusions Good practice in disclosure was also associated with parental understanding of their child, and parents being more likely to mobilize informal and formal supports. The implications of these findings are discussed.