The Burden of COVID-19 on Caregivers of Children with Suspected Genetic Conditions: A Therapeutic Odyssey.
Phys Occup Ther Pediatr
; : 1-15, 2022 Oct 30.
Article
in English
| MEDLINE | ID: covidwho-2285908
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.
Full text:
Available
Collection:
International databases
Database:
MEDLINE
Type of study:
Qualitative research
Language:
English
Journal:
Phys Occup Ther Pediatr
Year:
2022
Document Type:
Article
Affiliation country:
01942638.2022.2138734
Similar
MEDLINE
...
LILACS
LIS