Family experiences regarding treatments and therapies for children with developmental disabilities: A qualitative study

Abstract

Background and purpose: Children with developmental disabilities (DDs) often benefit from multiple treatments and therapies, and family-centered care (FCC) is encouraged to optimize child and family outcomes. However, limited understanding exists concerning these families' experiences. This study aimed to explore families' experiences with treatments and therapies for children with DDs, based on the principles of FCC. Methods: Focus group interviews were conducted with 19 parents of children with DDs in Korea. The semistructured interviews, guided by the FCC model, focused on key FCC components such as collaboration, education, family context, and policies. The data were analyzed using a directed content analysis approach. Results: Four major themes emerged corresponding to the FCC components: (1) Running in a three-legged race: parents valued active collaboration with competent healthcare practitioners but encountered inconsistent communication and superficial feedback; (2) Guiding stars on the journey: while parents appreciated opportunities for learning and peer support, they reported receiving little emotional support from healthcare practitioners; (3) Weaving the family and therapy together: some families experienced psychological growth through treatments and therapies for their children, but these processes often imposed emotional and financial strain; (4) Maze of public support: parents expressed frustration with the fragmentation of formal support and inconsistent access to quality care. Conclusions and implications: The findings demonstrate gaps in the implementation of FCC in therapeutic interventions for children with DDs. These insights indicate the need for more effective, family-centered approaches to enhance communication, provide emotional and practical support, and improve the fragmented public support systems.