ABSTRACT
Background: The number of Japanese children with developmental disabilities (DDs) has seen a steady increase in recent years. The parents and families of children with DD experience distress both at the time of DD diagnosis and afterward.
Aim: This study aimed to elucidate the issues and needs of the parents of children with DD to facilitate the development of effective support strategies necessary to help the family handle the special needs of their child with DD.
Methods: Japanese-speaking parents with children who were aged 3-14 years and currently being treated in a hospital for DDs were invited to participate in one of three focus groups. A trained moderator led each 90-minute audio-recorded group using a semistructured interview guide. All transcripts were coded using thematic content analysis.
Results: Six categories of parents' significant issues were identified, with three of the categories classified as critical needs.
Conclusions: The issues and needs identified in this study are useful for developing an effective family support program and a related performance framework. Key concerns include providing relevant information support, providing counseling and consultation support for parents and siblings, and providing resources to children with DD that are necessary to help them deal effectively with their disabilities.