An online survey to understand the needs of caregivers of family members with 22q11 deletion syndrome.
Caregivers of people with 22q11 deletion syndrome want a short online class that teaches hands-on skills and links them to peers.
01Research in Context
What this study did
The team sent an online survey to caregivers of people with 22q11 deletion syndrome. They asked what kind of help these families want most.
The survey was short and open to anyone caring for a person with the syndrome. No in-person visits were needed.
What they found
Caregivers said they want two things: quick online lessons in daily living skills and a way to talk with other caregivers.
They did not ask for long classes or heavy reading. They wanted bite-size videos and a peer chat room.
How this fits with other research
Howard et al. (2023) already showed a two-week online parent class can cut child behavior problems. The new survey says 22q11 families want that same short format.
Fisher et al. (2020) ran a virtual ABA course for autism parents and saw big skill gains. The 22q11 caregivers are asking for a similar web set-up.
McGonigle et al. (2014) mailed surveys and found high caregiver burden with almost no adult services. The new online survey keeps the same worry but adds a fix: brief web training plus peer support.
Why it matters
You now have caregiver data saying "give us short online lessons and a peer group." Use that when you design parent training. Pick a platform that hosts five-minute videos and a chat board. Start with daily living or safety skills, not theory. Invite caregivers to share wins and questions each week. This small tweak can boost engagement and cut no-show rates.
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02At a glance
03Original abstract
BACKGROUND: Most individuals with 22q11.2 deletion syndrome (22q11DS) have multi-system and lifelong needs requiring substantial support. Their primary caregivers are usually family members who dedicate lifelong time and effort to their role. The pressures of their roles can negatively impact caregivers' psychosocial well-being, suggesting a need for additional support for this community who currently have no specialised interventions available. METHOD: This online study surveyed 103 caregivers of family members with 22q11DS to determine the barriers to accessing support that they faced, the kind of support they would value and whether an online intervention could meet their needs. RESULTS: The caregivers indicated that a brief online intervention focused on teaching practical skills and connecting them with a peer network of support would be most valuable. CONCLUSIONS: Future studies are planned that will build on these results by designing and testing online interventions tailored to this community.
Journal of intellectual disability research : JIDR, 2023 · doi:10.1111/jir.13061