Quality of life of children with neurodevelopmental disorders and their parents during the COVID-19 pandemic: a 1-year follow-up study

Riyo Ueda,Yasuko Shiraki,Chika Kono,Nobuko Sugiura,Masatoshi Ukezono,Yoshimi Kono,Hiroshi Ozawa,Masaya Kubota,Hisami Inoue,Yukiko Nakamura,Kaoru Amemiya,Yuri Ozawa,Mutsuki Shioda,Miki Takada,Yosuke Kita,Yuichiro Matsuoka,Ai Ito,Takashi Okada,Chinami Kaiga

doi:10.1038/s41598-022-08273-2

Abstract

This study aimed to reveal changes in the quality of life (QOL) of children with neurodevelopmental disorders and their parents, and the interaction between their QOL and parental mental state during the coronavirus 2019 (COVID-19) pandemic. Eighty-nine school-aged children and parents participated in surveys in May 2020 (T1) and May 2021 (T2). The parents completed questionnaires that assessed their QOL, depression, parenting stress, and living conditions. Children’s temporary mood status was evaluated using the self-reported visual analog scale (VAS). Children’s QOL and VAS at T2 were higher than their QOL at T1. Parents’ QOL at T2 was lower than their QOL at T1. Severe parental depression at T1 had a synergistic effect on severe parenting stress and severe depressive state at T2. Additionally, children’s high QOL at T1 had a synergistic effect on low parenting stress and children’s high QOL at T2. Furthermore, children’s low VAS scores and parents’ low QOL at T2 were associated with deterioration of family economic status. Children and parents’ QOL changed during the prolonged COVID-19 pandemic. Improvement in children’s QOL was influenced by reduced maternal depressive symptoms. Public support for parental mental health is important to avoid decreasing QOL.

Highlights

This study aimed to reveal changes in the quality of life (QOL) of children with neurodevelopmental disorders and their parents, and the interaction between their QOL and parental mental state during the coronavirus 2019 (COVID-19) pandemic
Since COVID-19 had a significant negative impact on children with neurodevelopmental disorders (NDDs) and their parents, and children with NDDs find it difficult to adapt to lifestyle changes[2–5], there is a rising concern that the mental health of children with NDDs and parents might have worsened during the early period of the COVID-19 pandemic
We evaluated the quality of life (QOL) of children with NDDs and their parents in the early period of COVID-19 pandemic (May 2020; the COVID-19 pandemic (T1)) and one year later (May 2021; T2) during the pandemic

Summary

Introduction

This study aimed to reveal changes in the quality of life (QOL) of children with neurodevelopmental disorders and their parents, and the interaction between their QOL and parental mental state during the coronavirus 2019 (COVID-19) pandemic. The majority of children with autism spectrum disorder (ASD) had a higher probability of worsened behavioral symptoms during the pandemic than during the pre-COVID-19 era, and the need for professional support as perceived by parents was more for children with NDDs than for TDC2,5. The number of school-aged children (elementary school and junior and senior high school) who died by suicide in 2020 was 1.4 times higher than in 2 01912 These results suggest that the COVID-19 pandemic in Japan, as well as in foreign countries, had deleterious effects on the mental health of the whole population, including children with NDDs and their parents. Since COVID-19 had a significant negative impact on children with NDDs and their parents, and children with NDDs find it difficult to adapt to lifestyle changes[2–5], there is a rising concern that the mental health of children with NDDs and parents might have worsened during the early period of the COVID-19 pandemic

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