The experiences of mothers of children and young people with intellectual disabilities during the first COVID‐19 lockdown period

Abstract

Background Recent COVID‐19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. Conclusions All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well‐being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

Parental Distress and Perception of Children’s Executive Functioning after the First COVID-19 Lockdown in Italy

“…A large amount of literature demonstrates how parents of children exhibiting atypical development experienced higher levels of parental distress compared to parents of children exhibiting typical patterns of development [ 17 , 18 , 19 , 67 ]; however, during the lockdown, they reached higher levels of distress, just because they started from disadvantaged conditions. Our study confirmed the negative effects of home confinement on parental distress when children have a disability or developmental fragility; the unexpected lifestyle changes generated by the COVID-19 pandemic, were even more difficult for children exhibiting atypical development, as well as for their families [ 68 ], especially because the professional support of those specialists (physicians, therapists, psychologists, etc.) who took care of children had decreased.…”

‘We have been in lockdown since he was born’: a mixed methods exploration of the experiences of families caring for children with intellectual disability during the COVID-19 pandemic in the UK

“…Although this could be attributed to expectancy biases, we interpret this to be representative of the high national compliance during the first UK lockdown, particularly in individuals with pre-existing medical conditions. 51 Research by Rogers et al 33 with the mothers of IDD children highlighted themes of stigma and powerlessness, which were not as prominent in our interviews.…”

“…One previous qualitative study has examined the experiences of eight mothers of children with IDD in the UK. 33 These authors found that mothers felt under pressure to provide their child with educational and therapeutic provisions, which had been removed or reduced because of the pandemic. Mothers reported a lack of support from additional services, leading to increased stress and uncertainty, but also enjoyed the freedom from routine with several noting the positive impact it had for their child’s well-being.…”

Experiences of mothers caring for a child with an intellectual disability during the COVID‐19 pandemic in the Netherlands

“…Their accounts echo those reported by Rogers et al . (2021). Although this is a noteworthy and constructive observation, engagement in meaningful daily activities remain important for achieving personal development, physical well‐being, social relationships, social integration and other domains of quality of life (Mansell & Beadle‐Brown 2012).…”