Effects of the COVID-19 pandemic on quality of life among relatives of individuals with intellectual disabilities: A longitudinal study.
Ellen Zonneveld, Femke van Schelven, Hennie Boeije
PMID 36134473WHAT IT FOUND
Relatives of people with intellectual disabilities reported stable quality of life during the pandemic, but felt more burdened and less competent than before.
Support should focus on reducing care load and building caregiving confidence, rather than assuming quality of life has dropped.
Key findings
01Overall quality of life did not significantly change between 2019 and the first two waves of the pandemic, with over 75% rating it good or very good at all times.
02Perceived care burden increased significantly from Wave 1 to Wave 2, while perceived competence to care dropped significantly compared to 2019.
03Lower care burden, higher perceived competence, greater social support, and higher resilience were all significant predictors of a good quality of life at Wave 2.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The samples at each time point were not identical; only 37 relatives completed all three surveys, so observed changes may reflect different groups of people rather than individual change over time. Social support and resilience were only measured at Wave 2, so the study cannot determine if these factors changed or remained stable during the pandemic. The study did not account for socioeconomic status, which is a key component of quality of life and may have varied between the survey waves. The 2019 survey was online-only, which may have excluded relatives with lower digital literacy or less internet access.
Declared interests
The authors declared no conflicts of interest. The study was funded by ZonMw.
The easy way to misread this
Do not conclude that the pandemic had no negative impact on these families because their quality of life scores remained stable. The data show that care burden increased and perceived competence decreased significantly, indicating that families were working harder and feeling less capable, even if their overall subjective well-being did not drop below the threshold of 'good' during this specific period.