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

References

• Al van Tilburg, M., Edlynn, E., Maddaloni, M., van Kempen, K., Díaz-González de Ferris, M., & Thomas, J. (2020). High levels of stress due to the SARS-CoV-2 pandemic among parents of children with and without chronic conditions across the USA. Children, 7(10), 193. https://doi.org/10.3390/children7100193
   PubMedGoogle Scholar
• Almasri, N. A., An, M., & Palisano, R. J. (2018). Parents’ perception of receiving family-centered care for their children with physical disabilities: A meta-analysis. Physical & Occupational Therapy in Pediatrics, 38(4), 427–443.
   PubMed Web of Science ®Google Scholar
• Alonazi, A. (2021). Effectiveness and acceptability of telerehabilitation in physical therapy during COVID-19 in children: Findings of a systematic review. Children, 8(12), 1101. https://doi.org/10.3390/children8121101
   PubMedGoogle Scholar
• Andrist, E., Clarke, R. G., & Harding, M. (2020). Paved with good intentions: Hospital visitation restrictions in the age of coronavirus disease 2019. Pediatric Critical Care Medicine, 21(10), e924–e926. https://doi.org/10.1097/PCC.0000000000002506
   PubMed Web of Science ®Google Scholar
• Brosco, J. P. (2018). Whose odyssey is it? Family‐centered care in the genomic era. Hastings Center Report, 48, S20–S22. https://doi.org/10.1002/hast.879
   PubMed Web of Science ®Google Scholar
• Cacioppo, M., Bouvier, S., Bailly, R., Houx, L., Lempereur, M., Mensah-Gourmel, J., Kandalaft, C., Varengue, R., Chatelin, A., Vagnoni, J., Vuillerot, C., Gautheron, V., Dinomais, M., Dheilly, E., Brochard, S., & Pons, C. (2021). Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey. Annals of Physical and Rehabilitation Medicine, 64(3), 101429.
   PubMed Web of Science ®Google Scholar
• Campbell, I. M., Crowley, T. B., Keena, B., Donoghue, S., McManus, M. L., & Zackai, E. H. (2022). The experience of one pediatric geneticist with telemedicine‐based clinical diagnosis. American Journal of Medical Genetics Part A. Advance online publication. https://doi.org/10.1002/ajmg.a.62920
   Google Scholar
• Camden, C., & Silva, M. (2021). Pediatric teleheath: Opportunities created by the COVID-19 and suggestions to sustain its use to support families of children with disabilities. Physical & Occupational Therapy in Pediatrics, 41(1), 1–17.
   PubMed Web of Science ®Google Scholar
• Carmichael, N., Tsipis, J., Windmueller, G., Mandel, L., & Estrella, E. (2015). “Is it going to hurt?”: the impact of the diagnostic odyssey on children and their families. Journal of Genetic Counseling, 24(2), 325–335.
   PubMed Web of Science ®Google Scholar
• Childerhose, J. E., Rich, C., East, K. M., Kelley, W. V., Simmons, S., Finnila, C. R., Bowling, K., Amaral, M., Hiatt, S. M., Thompson, M., Gray, D. E., Lawlor, J. M. J., Myers, R. M., Barsh, G. S., Lose, E. J., Bebin, M. E., Cooper, G. M., & Brothers, K. B. (2021). The therapeutic odyssey: Positioning genomic sequencing in the search for a child’s best possible life. AJOB Empirical Bioethics, 12(3), 179–189.
   PubMedGoogle Scholar
• Crawford, A., & Serhal, E. (2020). Digital health equity and COVID-19: The innovation curve cannot reinforce the social gradient of health. Journal of Medical Internet Research, 22(6), e19361. https://doi.org/10.2196/19361
   PubMed Web of Science ®Google Scholar
• Dickinson, H., & Yates, S. (2020). More than isolated: The experience of children and young people with disability and their families during the COVID-19 pandemic. Public Service Research Group.
   Google Scholar
• Fraiman, Y. S., & Wojcik, M. H. (2021). The influence of social determinants of health on the genetic diagnostic odyssey: Who remains undiagnosed, why, and to what effect? Pediatric Research, 89(2), 295–300.
   PubMed Web of Science ®Google Scholar
• Garbe, A., Ogurlu, U., Logan, N., & Cook, P. (2020). COVID-19 and remote learning: Experiences of parents with children during the pandemic. American Journal of Qualitative Research, 4(3), 45–65.
   Google Scholar
• Gibbs, V., & Toth-Cohen, S. (2011). Family-centered occupational therapy and telerehabilitation for children with autism spectrum disorders. Occupational Therapy in Health Care, 25(4), 298–314.
   PubMedGoogle Scholar
• Groenewald, T. (2008). Memos and memoing. The SAGE Encyclopedia of Qualitative Research Methods, 2, 505–506.
   Google Scholar
• Halley, M. C., Stanley, T., Maturi, J., Goldenberg, A. J., Bernstein, J. A., Wheeler, M. T., & Tabor, H. K. (2021). “It seems like COVID-19 now is the only disease present on Earth”: Living with a rare or undiagnosed disease during the COVID-19 pandemic. Genetics in Medicine, 23(5), 837–844. https://doi.org/10.1038/s41436-020-01069-7
   PubMed Web of Science ®Google Scholar
• Jaswaney, R., Davis, A., Cadigan, R. J., Waltz, M., Brassfield, E. R., Forcier, B., & Joyner, B. L. Jr, (2022). Hospital policies during COVID-19: An analysis of visitor restrictions. Journal of Public Health Management and Practice, 28(1), E299–E306.
   PubMed Web of Science ®Google Scholar
• Kokorelias, K. M., Gignac, M. A., Naglie, G., & Cameron, J. I. (2019). Towards a universal model of family centered care: A scoping review. BMC Health Services Research, 19(1), 1–11. https://doi.org/10.1186/s12913-019-4394-5
   PubMed Web of Science ®Google Scholar
• Miller, D. (2021). The diagnostic odyssey: Our family’s story. The American Journal of Human Genetics, 108(2), 217–218. https://doi.org/10.1016/j.ajhg.2021.01.003
   PubMed Web of Science ®Google Scholar
• Murphy, A., Pinkerton, L. M., Bruckner, E., & Risser, H. J. (2021). The impact of the novel coronavirus disease 2019 on therapy service delivery for children with disabilities. The Journal of Pediatrics, 231, 168–177.e1. https://doi.org/10.1016/j.jpeds.2020.12.060
   PubMed Web of Science ®Google Scholar
• Navas, P., Verdugo, M. Á., Martínez, S., Amor, A. M., Crespo, M., & Deliu, M. M. (2022). Impact of COVID‐19 on the burden of care of families of people with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 35(2), 577–586.
   PubMed Web of Science ®Google Scholar
• Patel, K., Auton, M. F., Carter, B., Watkins, C. L., Hackett, M., Leathley, M. J., Thornton, T., & Lightbody, C. E. (2016). Parallel-serial memoing: A novel approach to analyzing qualitative data. Qualitative Health Research, 26(13), 1745–1752.
   PubMed Web of Science ®Google Scholar
• Rogers, G., Perez‐Olivas, G., Stenfert Kroese, B., Patel, V., Murphy, G., Rose, J., Cooper, V., Langdon, P. E., Hiles, S., Clifford, C., & Willner, P. (2021). The experiences of mothers of children and young people with intellectual disabilities during the first COVID‐19 lockdown period. Journal of Applied Research in Intellectual Disabilities, 34(6), 1421–1430. https://doi.org/10.1111/jar.12884
   PubMed Web of Science ®Google Scholar
• Rosell, A. M., Pena, L. D. M., Schoch, K., Spillmann, R., Sullivan, J., Hooper, S. R., Jiang, Y.-H., Mathey-Andrews, N., Goldstein, D. B., & Shashi, V. (2016). Not the end of the odyssey: parental perceptions of whole exome sequencing (WES) in pediatric undiagnosed disorders. Journal of Genetic Counseling, 25(5), 1019–1031.
   PubMed Web of Science ®Google Scholar
• Sawyer, S. L., Hartley, T., Dyment, D. A., Beaulieu, C. L., Schwartzentruber, J., Smith, A., Bedford, H. M., Bernard, G., Bernier, F. P., Brais, B., Bulman, D. E., Warman Chardon, J., Chitayat, D., Deladoëy, J., Fernandez, B. A., Frosk, P., Geraghty, M. T., Gerull, B., Gibson, W., … Boycott, K. M. (2016). Utility of whole‐exome sequencing for those near the end of the diagnostic odyssey: Time to address gaps in care. Clinical Genetics, 89(3), 275–284.
   PubMed Web of Science ®Google Scholar
• Simon, J., Hyde, C., Saravanapandian, V., Wilson, R., Distefano, C., Besterman, A., & Jeste, S. (2022). The diagnostic journey of genetically defined neurodevelopmental disorders. Journal of Neurodevelopmental Disorders, 14(1), 1–10. https://doi.org/10.1186/s11689-022-09439-9
   PubMed Web of Science ®Google Scholar
• Staley, B. S., Milko, L. V., Waltz, M., Griesemer, I., Mollison, L., Grant, T. L., Farnan, L., Roche, M., Navas, A., Lightfoot, A., Foreman, A. K. M., O'Daniel, J. M., O'Neill, S. C., Lin, F.-C., Roman, T. S., Brandt, A., Powell, B. C., Rini, C., Berg, J. S., & Bensen, J. T. (2021). Evaluating the clinical utility of early exome sequencing in diverse pediatric outpatient clinics in the North Carolina Clinical Genomic Evaluation of Next-Generation Exome Sequencing 2 study: A randomized controlled trial. Trials, 22(1), 395. https://doi.org/10.1186/s13063-021-05341-2
   PubMed Web of Science ®Google Scholar
• Tully, T. (2021, April 28). With U.S. school districts making their own rules, children with special needs miss out. The New York Times. https://www.nytimes.com/2021/04/28/world/with-us-school-districts-making-their-own-rules-children-with-special-needs-miss-out.html
   Google Scholar
• Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID‐19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities : JARID, 33(6), 1523–1533.
   PubMed Web of Science ®Google Scholar
• Wittmeier, K. D., Hammond, E., Tymko, K., Burnham, K., Janssen, T., Pablo, A. J., Russell, K., Pierce, S., Costello, C., & Protudjer, J. L. (2022). “Another tool in your toolkit”: Pediatric occupational and physical therapists’ perspectives of initiating telehealth during the COVID-19 pandemic. Physical & Occupational Therapy in Pediatrics, 42(5), 465–481.
   PubMed Web of Science ®Google Scholar