Parents' disclosure of their child's health and neurodevelopmental conditions: A systematic review and qualitative metasynthesis.

Abstract

Parents of children with physical/mental health and/or neurodevelopmental conditions often need to make disclosure decisions for their child. Disclosure can bring benefits (e.g., support) but can also risk harm (e.g., stigma). This systematic review aimed to consolidate research regarding parents' disclosure experiences to better understand how to support parents during this process. We focused on two research questions: (1) What factors contribute to parents' decision to disclose or conceal their child's health or neurodevelopmental condition? (2) If they choose to do so, how, when, and to whom do parents typically disclose? Twenty studies of medium to good quality were identified through systematic electronic database searches since 1990. Data were analyzed using a descriptive-interpretative approach and presented as a qualitative metasynthesis. Factors contributing to parents' disclosure decisions included managing stigma, protecting privacy, advocating, and seeking social support. Parents considered disclosure based on existing relationships, adapted disclosure content to context, and planned how to disclose. Throughout all findings, the child's best interests were at the forefront of parents' decision making. Factors affecting parents' disclosure decisions were similar across different childhood conditions. Disclosure decisions are complex and challenging but become easier with experience after the child's diagnosis, indicating that parents need disclosure support relatively soon after diagnosis. (PsycInfo Database Record (c) 2025 APA, all rights reserved).