‘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

Abstract

ObjectivesThis study aimed to explore the experiences of parents caring for children with intellectual and developmental disabilities (IDD) during the UK national lockdown in spring 2020, resulting from the COVID-19 pandemic.DesignParticipants were identified using opportunity sampling from the IMAGINE-ID national (UK) cohort and completed an online survey followed by a semistructured interview. Interviews were analysed using thematic analysis.SettingInterviews were conducted over the telephone in July 2020 as the first UK lockdown was ending.Participants23 mothers of children with intellectual and developmental disabilities aged 5–15 years were recruited.ResultsThemes reported by parents included: managing pre-existing challenges during a time of extreme change, having mixed emotions about the benefits and difficulties that arose during the lockdown and the need for appropriate, individualised support.ConclusionsOur findings confirm observations previously found in UK parents of children with IDD and provide new insights on the use of technology during the pandemic for schooling and healthcare, as well as the need for regular check-ins.

Effects of the COVID‐19 pandemic on quality of life among relatives of individuals with intellectual disabilities: A longitudinal study

“…Perceived care burden increased during the pandemic. This is consistent with previous findings (e.g., Budnick et al, 2021 ), and could be explained by an increased care intensity due to the limited access to respite care, residential schools, and day services (Gillespie‐Smith et al, 2021 ; Rogers et al, 2021 ; Wolstencroft et al, 2021 ; Wos et al, 2021 ). Research suggests that the impact of the pandemic on perceived care burden is especially high for relatives who usually rely on these types of professional support (Budnick et al, 2021 ; Courtenay & Perera, 2020 ).…”

“…Caring for an individual with intellectual disabilities is associated with several changes in relatives' daily lives (e.g., Yoong & Koritsas, 2012 ). In a study by Wolstencroft et al ( 2021 ), mothers of a child with intellectual and developmental disabilities described social distancing as part of their daily lives, even before the pandemic. As a result of these changes, relatives might have redefined what aspects constitute a good quality of life and what a “good” quality of life entails (Howard et al, 2011 ).…”

“…Furthermore, the preventative measures have led to an increased reliance on informal caregivers while the majority of services and support systems were withdrawn, making it more difficult to combine professional, domestic and caregiving tasks, and increasing experienced burden (Budnick et al, 2021 ; Gillespie‐Smith et al, 2021 ; Rogers et al, 2021 ; Wos et al, 2021 ). This is especially demanding for people whose relatives with intellectual disabilities show more behavioural challenges as a result of the isolation and change in routine and structure (Bentenuto et al, 2021 ; Courtenay & Perera, 2020 ; Gillespie‐Smith et al, 2021 ; Wolstencroft et al, 2021 ).…”

Experiences of parents of children with rare neurogenetic conditions during the COVID-19 pandemic: an interpretative phenomenological analysis.

“…Recent quantitative work suggests that the pandemic has had a detrimental impact on the mental health and wellbeing of children with rare neurogenetic conditions in the UK (6,7). For example, in our own work, we demonstrated that children with rare neurogenetic conditions experienced higher levels of internalising and externalising difficulties during the first UK lockdown, and that these difficulties had a significantly greater impact on daily functioning when compared to children in the wider population (6).…”

“…We also observed the effect size of these differences were greater than those reported in independent studies prior to the pandemic, highlighting the profound impact of the pandemic on emotional and behavioural difficulties, and daily functioning in children with rare neurogenetic conditions. In another study of families of children with rare neurogenetic conditions during the first UK lockdown, children were reported to experience stress navigating social restrictions and isolation, and worries surrounding COVID-19 infection (7). Taken together, these findings suggest that children with rare neurogenetic conditions' mental health and wellbeing was negatively impacted during the early phases of the pandemic in the UK.…”