An online survey to understand the needs of caregivers of family members with 22q11 deletion syndrome-Reference-Cited by-同舟云学术

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

Published:2023-07-14 Issue:9 Volume:67 Page:860-868
ISSN:0964-2633
Container-title:Journal of Intellectual Disability Research
language:en
Short-container-title:J intellect Disabil Res

Author:

Cosman T.¹,Finless A.¹,Rideout A. L.²,Lingley‐Pottie P.³,Palmer L. D.⁴,Shugar A.⁵,McDonald‐McGinn D. M.⁶,Swillen A.⁷,McGrath P. J.³⁸,Bassett A. S.⁴⁹,Cytrynbaum C.⁵,Orr M.³,Meier S.³⁸

Affiliation:

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

Abstract

AbstractBackgroundMost 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.MethodThis 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.ResultsThe 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.ConclusionsFuture studies are planned that will build on these results by designing and testing online interventions tailored to this community.

Funder

Canadian Institutes of Health Research

Canada Foundation for Innovation

Publisher

Wiley

Subject

Psychiatry and Mental health,Neurology (clinical),Neurology,Arts and Humanities (miscellaneous),Rehabilitation

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1111/jir.13061

Reference17 articles.

1. Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: design of a randomized controlled trial

2. Functional outcomes of adults with 22q11.2 deletion syndrome

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4. Practical guidelines for managing adults with 22q11.2 deletion syndrome

5. Early positive approaches to support (E‐PAtS): Qualitative experiences of a new support programme for family caregivers of young children with intellectual and developmental disabilities

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