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

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.

The hidden (overlooked) impact of living through a pandemic: How parents of children with disabilities fared during COVID-19?

“…The more social support mothers receive in relation to care of their children, the higher their family quality of life is (Kasser and Zia, 2020). Findings of the current study support the notion that the effect of having a child with disability on family quality of life is mediated by the resilience of the parents and the social support they receive (Ueda et al, 2022) and that social support is an important mediating variable in the relationship between resilience and quality of life (Mathew and Nair, 2017). This finding warrants the need for providing social services and psychological supports to children with disabilities and their families during the pandemic (Amor et al, 2021).…”

“…A main finding of the current study is that the quality of life of families who have children with disabilities decreased as the impact of the traumatic event (COVID-19 pandemic) increased. Studies conducted with families of children with different disabilities prior to or during the COVID-19 pandemic showed that families usually have lower levels of quality of life in comparison to families of children with typical development (Al Awaji et al, 2021;Ueda et al, 2022). For example, research has shown that families of children with intellectual disability (Bertelli et al, 2011), autism spectrum disorder (Cohen et al, 2014), cerebral palsy (Barros et al, 2019), and multiple disabilities (Chou et al, 2011) have relatively lower levels of quality of life.…”

“…Considering the pandemic as a traumatic experience (Volpe, 1996), it seems likely that families of children with disabilities will exhibit post-traumatic stress symptoms during and after the COVID-19 pandemic (Ueda et al, 2022). Some researchers (e.g., Weiss, 2002) consider having social support as one of the variables that will minimize the effects of traumatic stress.…”

“…Researchers have also noted that inability to receive educational and support services much needed for these children and families can increase the stress level of parents (Navas et al, 2022;Werner et al, 2022) and cause behavior problems and challenges in children (Narzisi, 2020). The high levels of stress in families negatively affect the welfare and quality of life and result in decreased parental attention to support their children (Osborne et al, 2008;Ali et al, 2021;Ueda et al, 2022). This, in turn, adversely impacts the development and learning of children with disabilities (Bruder et al, 2021).…”

CRISIS AFAR: An International Collaborative Study of the Impact of the COVID-19 Pandemic on Youth with Autism and Neurodevelopmental Conditions

“…Similarly, although family demographics, parent education, and parent being an essential worker were included in our predictive model, parent's mental health, recently reported to relate to children's outcome during the pandemic, [55][56][57][58] was not assessed. Second, although the aggregate sample includes youths with clinician-based diagnoses, previously collected measures of severity varied by contributing sample, and assessments of prior severity were based on parent responses in the AFAR survey.…”