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

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

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

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