Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic.
Adult siblings are hidden pandemic caregivers—give them their own mental-health resources.
01Research in Context
What this study did
Redquest et al. (2021) sent an online survey to 91 adult brothers and sisters of people with intellectual or developmental disabilities. They asked how COVID-19 changed daily life, help given, and personal stress.
The survey ran during the first year of the pandemic. Most siblings also held jobs and cared for their own children while checking on their brother or sister.
What they found
Siblings became frontline helpers overnight. They handled grocery runs, tech support, and medical calls when day programs closed.
Many said they felt proud but also drained. They wanted someone to ask, 'How are you doing?' and point them to counseling or respite.
How this fits with other research
Sutton et al. (2022) reviewed 30 studies and found low social support predicts depression in siblings of kids with neurodevelopmental disorders. K's survey shows the same risk holds for adults during a crisis.
Gu et al. (2023) pooled 20 pandemic studies and found roughly half of all caregivers had clinical anxiety or depression. K's numbers line up: siblings are part of that stressed group.
Hochman et al. (2025) tracked mothers of adults with ID over four time points. Stress dropped for most families as services returned, but stayed high when the adult had profound ID. K's cross-sectional picture fits the early, worst phase that Yael captured first.
Why it matters
If you write a behavior plan or run a parent training, add a slide for siblings. Hand out a short list of free counseling apps, crisis lines, and sibling support groups. One extra page can cut their loneliness and keep the whole family on board with your treatment goals.
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02At a glance
03Original abstract
BACKGROUND: The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. METHODS: The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. RESULTS: The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. CONCLUSIONS: Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.
Journal of intellectual disability research : JIDR, 2021 · doi:10.1111/jir.12793