Exploring parental uncertainty and information needs for children with developmental disabilities: A qualitative study

Understanding what information can reduce uncertainty is crucial for alleviating stress and improving the well-being of both parents and their children with developmental disabilities.

This qualitative study aimed to address the gap in understanding the specific types of information that effectively reduce parental uncertainty across different stages of raising a child with developmental disabilities.

In-depth interviews were conducted with 19 parents of children with developmental disabilities, ranging from early childhood to late adolescence (ages 2 to 16), in South Korea from July 15 to September 18, 2023. Conventional content analysis identified the categories, main themes, and subthemes.

Three categories, six main themes, and 12 subthemes were identified. The categories and corresponding themes are: First, information needs across the life cycle-infancy and toddlerhood (trial and error in early detection and intervention), school-age (challenges throughout the educational journey), and adolescence (challenges in transitioning to adulthood). Second, struggles with the healthcare support system-need for integration resources and specialized nursing services. Lastly, striving for normalization-embracing persistent uncertainty amid ongoing challenges.

The findings provide foundational data on parental concerns and uncertainty that can be addressed through nurse-led, information-based interventions. These efforts can enhance care coordination and guide the development of advocacy and intervention programs to improve outcomes for children and their parents.

This study underscores the need for policy support to establish hospital protocols that ensure appropriate care and to develop community infrastructure for early identification and coordinated care, with nurses playing a central role.