The Burden of COVID-19 on Caregivers of Children with Suspected Genetic Conditions: A Therapeutic Odyssey

Margaret Waltz*, Courtney Canter, Jeannette T. Bensen, Jonathan S. Berg, Ann Katherine M. Foreman, Tracey L. Grant, Kristen Hassmiller Lich, Angelo Navas, Julianne M. O’Daniel, Bradford C. Powell, Christine M. Rini, Brooke S. Staley, R. Jean Cadigan

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Aims: Children with disabilities and rare or undiagnosed conditions and their families have faced numerous hardships of living during the COVID-19 pandemic. For those with undiagnosed conditions, the diagnostic odyssey can be long, expensive, and marked by uncertainty. We, therefore, sought to understand whether and how COVID-19 impacted the trajectory of children’s care. Methods: We conducted semi-structured qualitative interviews with 25 caregivers who, prior to the pandemic, were on a diagnostic odyssey for their children. Results: Most caregivers did not report any interruptions to their child’s diagnostic odyssey. The greatest impact was access to therapy services, including the suspension or loss of their child’s in-person therapeutic care and difficulties with virtual therapies. This therapy gap caused caregivers to fear that their children were not making progress. Conclusion: Although much has been written about the challenges of diagnostic odysseys for children and their families, this study illustrates the importance of expanding the focus of these studies to include therapeutic odysseys. Because therapeutic odysseys continue regardless of whether diagnoses are made, future research should investigate how to support caregivers through children’s therapies within and outside of the COVID-19 context.

Original languageEnglish (US)
Pages (from-to)257-271
Number of pages15
JournalPhysical and Occupational Therapy in Pediatrics
Volume43
Issue number3
DOIs
StatePublished - 2023

Funding

This work was supported by the National Institutes of Health (NIH) under [Grant U01HG006487]. The authors would like to thank those who participated in the interview study, our Community Consult Team for their ongoing involvement and feedback for the NCGENES 2 study, and Lonna Mollison for her input on the interview guide.

Keywords

  • COVID-19
  • diagnostic odyssey
  • pediatric therapies
  • rare or undiagnosed conditions
  • therapeutic odyssey

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation
  • Occupational Therapy

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