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

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.

Keywords:

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

Acknowledgments

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.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Due to the nature of this research, participants of this study did not consent to their data to be shared publicly, so supporting data is not available.

Additional information

Funding

This work was supported by the National Institutes of Health (NIH) under [Grant U01HG006487].

Notes on contributors

Margaret Waltz

Margaret Waltz is a Research Scientist in the Department of Social Medicine and the Center for Bioethics at the University of North Carolina, Chapel Hill. She received a PhD in Sociology from Case Western Reserve University in Cleveland, Ohio.

Courtney Canter

Courtney Canter is a PhD candidate in the Department of Anthropology and an MD student in the School of Medicine at the University of North Carolina, Chapel Hill. She received an MA in Anthropology from the University of North Carolina, Chapel Hill.

Jeannette T. Bensen

Jeannette T. Bensen is an Associate Professor of Epidemiology at the University of North Carolina, Chapel Hill. She received a PhD in Molecular Medicine from Wake Forest University in Winston-Salem, North Carolina and a MS in Genetic Counseling from the University of Pittsburgh School of Public Health.

Jonathan S. Berg

Jonathan S. Berg is the Bryson Distinguished Professor of Genetics and Medicine in the Department of Genetics at the University of North Carolina, Chapel Hill. He received an MD and PhD from the University of North Carolina, Chapel Hill.

Ann Katherine M. Foreman

Ann Katherine M. Foreman is a Clinical Assistant Professor and Genetic Counselor in the Department of Genetics at the University of North Carolina School of Medicine. She received an MS in Genetic Counseling from the University of North Carolina at Greensboro and is certified by the American Board of Genetic Counseling.

Tracey L. Grant

Tracey L. Grant is a Study Coordinator in the Department of Genetics at the University of North Carolina, Chapel Hill. She received an MS in Human Genetics from the University of Michigan, Ann Arbor.

Kristen Hassmiller Lich

Kristen Hassmiller Lich is an Associate Professor in the Department of Health Policy and Management at the University of North Carolina, Chapel Hill. She received a PhD in Health Services Organization and Policy from the University of Michigan and specializes in system mapping/modeling to help diverse stakeholders improve complex systems.

Angelo Navas

Angelo Navas is a PhD student in the Division of Pharmaceutical Outcomes and Policy at UNC Eshelman School of Pharmacy. He received a bachelor’s degree in Healthcare Administration from Liberty University in Virginia.

Julianne M. O’Daniel

Julianne M. O’Daniel is a Clinical Associate Professor and Genetic Counselor in the Department of Genetics at the University of North Carolina School of Medicine. She received an MS in Genetic Counseling from the University Pittsburgh and is certified by the American Board of Genetic Counseling.

Bradford C. Powell

Bradford C. Powell is an Assistant Professor in the departments of Genetics and Medicine at the University of North Carolina, Chapel Hill. He received an MD and PhD in Genetics and Molecular Biology from the University of North Carolina and maintains active board certification in Pediatrics and Medical Genetics.

Christine M. Rini

Christine M. Rini is a Professor in the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine. She received a PhD in Social Psychology from the University of California, Los Angeles.

Brooke S. Staley

Brooke S. Staley is a PhD Candidate in the Department of Epidemiology in the Gillings School of Global Public Health at the University of North Carolina. She received her MPH from Morehouse School of Medicine in Atlanta, GA.

R. Jean Cadigan

R. Jean Cadigan is an Associate Professor of Social Medicine and the Center for Bioethics at the University of North Carolina, Chapel Hill. She received a PhD in Anthropology from the University of California, Los Angeles.