Resilience, and positive parenting in parents of children with syndromic autism and intellectual disability. Evidence from the impact of the COVID-19 pandemic on family's quality of life and parent-child relationships.
Corneliu Bolbocean, Kayla B Rhidenour, Maria McCormack and 2 others
PMID 36196501WHAT IT FOUND
Parents of children with syndromic autism maintained stable family quality of life during the pandemic, despite significant disruptions to healthcare access.
Most reported positive parent-child relationships, with low conflict and high satisfaction. However, those losing predictable routines or healthcare access saw lower family quality of life scores.
Key findings
01There were no statistically significant differences in average family quality of life scores between the prepandemic period (2018) and the first year of the pandemic.
02Severe or moderate changes in healthcare access were associated with a decrease of 12.76 points in family quality of life scores, while maintaining a predictable routine was associated with a 10.72 point increase.
03Parent-child relationships remained largely positive, with 65.3% of parents reporting they never or hardly ever put their child down, and 44.4% reporting they never or hardly ever disagreed or quarreled with their child.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The prepandemic (2018) and pandemic (2020-2021) samples were recruited using identical methods but were not necessarily the same individuals, so this is not a true within-subject longitudinal analysis. Socioeconomic variables were not collected in the prepandemic study, so comparisons could not be adjusted for these factors. The parent-child relationship measure was an ad hoc scale developed by the authors and not a validated instrument. Diagnoses were self-reported by parents and not clinically confirmed by the researchers. Participants were recruited via patient registries from specific foundations, which may select for families who are more connected to services and potentially not representative of the broader population of families with these conditions.
Declared interests
The study was supported by non-U.S. government sources. The text does not report specific commercial funding or conflicts of interest from the authors, other than the recruitment channels being disease-specific foundations.
The easy way to misread this
Do not interpret the stable family quality of life scores as evidence that the pandemic had no impact on these families. The study found significant disruptions to healthcare access and routines, which were strongly associated with lower quality of life scores. The overall stability likely reflects a resilient subgroup of families connected to support networks, and the lack of a true within-subject comparison means we cannot rule out that individual families did experience declines that were masked by the cross-sectional comparison.