COVID‐19 impact on psychological outcomes of parents, siblings and children with intellectual disability: longitudinal before and during lockdown design

Abstract

Background Parents of children with intellectual disability (ID) report comparatively lower levels of well‐being than parents of children without ID. Similarly, children with ID, and to a lesser extent their siblings, are reported to show comparatively higher levels of behaviour and emotional problems. Psychological problems may be accentuated by restrictions associated with the COVID‐19 pandemic, due to increased social, caring and economic stressors and reduced social support. However, existing studies have not been able to examine the impact of COVID‐19 restrictions accounting for pre‐COVID levels of well‐being in these families. In a naturalistic design, we examined outcomes for parents, siblings and children with ID in a two‐wave longitudinal study where Wave 2 data were gathered for some families before and some during COVID‐19 restrictions. Methods Parents of children with ID who took part in a Wave 2 survey pre‐lockdown ( n = 294) and during/post‐lockdown ( n = 103) completed a number of measures about their well‐being and the behaviour and emotional problems of both their child with ID and their nearest‐in‐age sibling. These same measures had also been completed for all families 2–3 years previously in Wave 1 of the study. Results After accounting for covariates including family socio‐economic circumstances, pre‐lockdown and post‐lockdown groups did not differ on Waves 1 to 2 change for measures of parental psychological distress, life satisfaction, the impact of caregiving on their lives or perceived positive gains; nor child or sibling internalising or externalising behaviour problems. Conclusions Findings of the current study indicate that during and shortly after the COVID‐19 lockdown in the United Kingdom, well‐being in families of children with an ID (as reported by parents) was at similar levels compared with prior to the lockdown period.

The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: a scoping review

“…With public health guidelines emphasising maintaining a 2meter distance to fight the virus, families face growing challenges that may be impossible to meet [71], and it may be unreasonable to expect a person with intellectual disability in care to cope when separated from their family [72]. Families caring in their own home are experiencing higher levels of concerns and anxiety [33,73,74] which is fuelled by a loss of routine, educational and therapeutic supports and the introduction of new stressors [27]. These all result in a decreased capacity to cope and increased isolation for the family [35,75] and despite some proactive approaches to use alternative communication means to provide support services they may not be effective in filling the gap created by reduced face-to-face contact [76].…”

The impact of COVID‐19 on the social inclusion of older adults with an intellectual disability during the first wave of the pandemic in Ireland

“…The importance of longitudinal data in examining the impact of the COVID‐19 pandemic has been highlighted by Bailey et al . (2021) who used a similar design as the current study.…”

“…A critical strength of this study is that data come from a long‐standing longitudinal study, which pre‐existed the COVID‐19 pandemic, the type of data highlighted as important to our understanding of the impact of the pandemic on people with ID (Bailey et al . 2021). The interrupted (pre‐pandemic/post‐pandemic) wave 4 longitudinal data presented here may be further supplemented by pre‐pandemic wave 3 data collected in 2017, as well as post‐pandemic study of the same sample, including two waves of the specific COVID‐19 survey (May–September 2020 and May 2021) and wave 5 of the longitudinal study in 2022–2023.…”

The Impact of COVID-19 Restrictions on Psychological Distress in Family Caregivers of Children with Neurodevelopmental Disability in the UK

“…In addition, research to date has examined the impact of COVID-19 on caregivers of children with ID focusing independently on either coping strategies (e.g. Willner et al, 2020 ) or levels of children’s challenging behaviours (e,g, Bailey et al, 2021 ; Mutluer et al, 2020 ). The current study examines both of these interdependent factors within the same UK sample, providing novel insight into how both parental coping strategies and children’s challenging behaviours impact parental mental health during COVID-19 restrictions.…”