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

T Cosman; A Finless; A L Rideout; P Lingley-Pottie; L D Palmer; A Shugar; D M McDonald-McGinn; A Swillen; P J McGrath; A S Bassett; C Cytrynbaum; M Orr; S Meier

doi:10.1111/jir.13061

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

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

Authors

T Cosman¹, A Finless¹, A L Rideout², P Lingley-Pottie³, L D Palmer⁴, A Shugar⁵, D M McDonald-McGinn⁶, A Swillen⁷, P J McGrath^{3

8}, A S Bassett^{4

9}, C Cytrynbaum⁵, M Orr³, S Meier^{3

8}

Affiliations

¹ Department of Psychology/Neuroscience, Dalhousie University, Halifax, Nova Scotia, Canada.
² Maritime Medical Genetics Service, IWK Health Centre, Halifax, Nova Scotia, Canada.
³ Department of Psychiatry, Dalhousie University, Halifax, Nova Scotia, Canada.
⁴ Dalgish Family 22q Clinic, Department of Psychiatry, Division of Cardiology Department of Medicine, Toronto General Hospital Research Institute, University Health Network, Clinical Genetics Research Program, Campbell Family Mental Health Research Institute, Centre for Addiction and Mental Health, Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada.
⁵ Division of Clinical and Metabolic Genetics and the Department of Genetic Counselling, the Hospital for Sick Children, Department of Molecular Genetics, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
⁶ Division of Human Genetics, 22q and You Center, Clinical Genetics Center, and Section of Genetic Counselling, Children's Hospital of Philadelphia, Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
⁷ Center for Human Genetics, UZ Leuven, Department of Human Genetics, KU Leuven, Leuven, Belgium.
⁸ Department of Psychiatry and Specific Care Clinics, IWK Health Centre, Halifax, Nova Scotia, Canada.
⁹ Department of Psychiatry and Division of Cardiology Department of Medicine, and Toronto General Hospital Research Institute, University Health Network; Clinical Genetics Research Program and Campbell Family Mental Health Research Institute, Centre for Addiction and Mental Health, Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada.

PMID: 37449408
DOI: 10.1111/jir.13061

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Caregivers* / psychology
DiGeorge Syndrome* / psychology
Family / psychology
Humans
Peer Group
Surveys and Questionnaires

Abstract

Publication types

MeSH terms

Grants and funding