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

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 caregi...

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Published in:Journal of Intellectual Disability Research Vol. 67; no. 9; pp. 860 - 869
Main Authors: Cosman, T., Finless, A., Rideout, A. L., Lingley‐Pottie, P., Palmer, L. D., Shugar, A., McDonald‐McGinn, D. M., Swillen, A., McGrath, P. J., Bassett, A. S., Cytrynbaum, C., Orr, M., Meier, S.
Format: questionnaire/scale research tables/charts Journal Article
Published: Wiley-Blackwell Sep2023
Online Access:View this record in EBSCOhost
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      dt: Sep2023
      vid: 67
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        10.1111/jir.13061
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        atl: An online survey to understand the needs of caregivers of family members with 22q11 deletion syndrome.
      aug:
        au:
          Cosman, T.
          Finless, A.
          Rideout, A. L.
          Lingley‐Pottie, P.
          Palmer, L. D.
          Shugar, A.
          McDonald‐McGinn, D. M.
          Swillen, A.
          McGrath, P. J.
          Bassett, A. S.
          Cytrynbaum, C.
          Orr, M.
          Meier, S.
        affil: Department of Psychology/Neuroscience, Dalhousie University, Halifax Nova Scotia,, Canada
      sug:
        subj:
          22q11 Deletion Syndrome Therapy
          Caregiver Burden Prevention and Control
          Caregiver Support
          Family
          Health Services Needs and Demand
          World Wide Web
          Professional Role
          Human
          Surveys
          Psychological Well-Being
          Needs Assessment
          Online Education
          Caregivers Education
          Funding Source
      ab: 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.
      pubtype: Academic Journal
      doctype:
        questionnaire/scale
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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