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. 2023 Sep;67(9):860-868.
doi: 10.1111/jir.13061. Epub 2023 Jul 14.

An online survey to understand the needs of caregivers of family members with 22q11 deletion syndrome

T Cosman  1 , A Finless  1 , A L Rideout  2 , P Lingley-Pottie  3 , L D Palmer  4 , A Shugar  5 , D M McDonald-McGinn  6 , A Swillen  7 , P J McGrath  3   8 , A S Bassett  4   9 , C Cytrynbaum  5 , M Orr  3 , S Meier  3   8
Affiliations

An online survey to understand the needs of caregivers of family members with 22q11 deletion syndrome

T Cosman et al. J Intellect Disabil Res. 2023 Sep.

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.

Keywords: DiGeorge syndrome; caregivers; online intervention; psychosocial wellbeing; survey.

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References

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