Impact of the coronavirus disease 2019 (COVID-19) pandemic on children and youth with special needs and their families in Japan and support issues

Objective: To elucidate the impact of the coronavirus disease 2019 (COVID-19) pandemic on children and youth with special needs, their families, and their supporters in Japan. Methods: This qualitative descriptive study was carried out via focus groups. Participants were care providers and family caregivers of children and youth with special needs. In the survey, the participants were asked about the changes in physical and mental health, caregiving status, and multidisciplinary collaboration during the COVID-19 pandemic. Results: The categories of the impact of the COVID-19 pandemic on children and youth with special needs and their families were [Concentration of burden on primary caregivers], [Mental stress of the primary caregiver], [Mental and physical impact on children and youth with special needs], [Dissatisfaction/anxiety about changes in social interactions], [Sibling/family mental stress], and [Increased risk of abuse due to lack of respite]. The problems encountered by service providers during the pandemic included [Difficulty in utilizing social resources], [Disparities in the use of support services and systems], [Problems due to the changes in the way people go to the hospital], [Difficulties in assuring quality of professional care], [Challenges in organizing a pediatric home care team], and [Need to understand a diverse group of children and youth with special needs]. Conclusions: Our data suggest the need for support to replace family caregiving, as the burden is concentrated on the primary caregiver. In the future, a system will be required to promptly respond to the special needs of each child through the collaboration of the government, hospital, and community.