Mothers’ Experiences of Care Coordination for Children with Disabilities: A Qualitative Study

Abstract

Few studies have investigated the care coordination for children with disabilities and their families in Japan. Care coordination enhances the quality of care for these children and their families. This study explores mothers’ experiences of coordinated care provided to their children with disabilities and their families. We used a qualitative descriptive approach, conducting semi-structured interviews with 11 Japanese mothers/primary caregivers of children with disabilities to describe their experiences. Four main themes were identified: shared decision-making with key workers, receiving an assessment of the entire family, timely access to coordinated health care services, and a reduced psychological burden and empowerment of mothers. Our findings suggest that care coordination has multiple beneficial effects on children with disabilities and their families, including improving the outcomes. Further research should examine how high-quality care coordination can be provided for such children and their families.

Keywords

• children with disability
• mother
• primary caregiver
• family
• care coordination