دورية أكاديمية
The Burden of COVID-19 on Caregivers of Children with Suspected Genetic Conditions: A Therapeutic Odyssey.
| العنوان: | The Burden of COVID-19 on Caregivers of Children with Suspected Genetic Conditions: A Therapeutic Odyssey. |
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| المؤلفون: | Waltz M; Department of Social Medicine, University of North Carolina, Chapel Hill, NC, USA., Canter C; Department of Anthropology, University of North Carolina, Chapel Hill, NC, USA., Bensen JT; Department of Epidemiology, University of North Carolina, Chapel Hill, NC, USA., Berg JS; Department of Genetics, University of North Carolina, Chapel Hill, NC, USA., Foreman AKM; Department of Genetics, University of North Carolina, Chapel Hill, NC, USA., Grant TL; Department of Genetics, University of North Carolina, Chapel Hill, NC, USA., Hassmiller Lich K; Department of Health Policy and Management, University of North Carolina, Chapel Hill, NC, USA., Navas A; Department of Pediatrics, University of North Carolina, Chapel Hill, NC, USA., O'Daniel JM; Department of Genetics, University of North Carolina, Chapel Hill, NC, USA., Powell BC; Department of Genetics, University of North Carolina, Chapel Hill, NC, USA., Rini CM; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA., Staley BS; Department of Epidemiology, University of North Carolina, Chapel Hill, NC, USA., Cadigan RJ; Department of Social Medicine, University of North Carolina, Chapel Hill, NC, USA. |
| المصدر: | Physical & occupational therapy in pediatrics [Phys Occup Ther Pediatr] 2023; Vol. 43 (3), pp. 257-271. Date of Electronic Publication: 2022 Oct 30. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: Taylor & Francis Group Country of Publication: England NLM ID: 8109120 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1541-3144 (Electronic) Linking ISSN: 01942638 NLM ISO Abbreviation: Phys Occup Ther Pediatr Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: [London] : Taylor & Francis Group Original Publication: [New York] : Haworth Press, [c1981- |
| مواضيع طبية MeSH: | Caregivers* , COVID-19*, Humans ; Child ; Pandemics ; Fear |
| مستخلص: | 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. |
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| معلومات مُعتمدة: | T32 HL129982 United States HL NHLBI NIH HHS; U01 HG006487 United States HG NHGRI NIH HHS |
| فهرسة مساهمة: | Keywords: COVID-19; diagnostic odyssey; pediatric therapies; rare or undiagnosed conditions; therapeutic odyssey |
| تواريخ الأحداث: | Date Created: 20221031 Date Completed: 20230406 Latest Revision: 20240102 |
| رمز التحديث: | 20240102 |
| مُعرف محوري في PubMed: | PMC10079636 |
| DOI: | 10.1080/01942638.2022.2138734 |
| PMID: | 36310386 |
| قاعدة البيانات: | MEDLINE |
PDF full text from Publisher | تدمد: | 1541-3144 |
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| DOI: | 10.1080/01942638.2022.2138734 |