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

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.

Hospital Policies During COVID-19: An Analysis of Visitor Restrictions.

OBJECTIVE: In response to the COVID-19 pandemic, hospitals have developed visitor restriction policies in order to mitigate spread of infection. We reviewed hospital visitor restriction policies for consistency and to develop recommendations to highlight fair and transparent restrictions, exceptions, and appeals in policy development and implementation. DESIGN: Collection and analysis of public-facing visitor restriction policies during the first 3 months of the pandemic. SETTING: General acute care hospitals representing 23 states across all 4 major regions of the United States. PARTICIPANTS: A cohort of the 70 largest hospitals by total bed capacity. MEASUREMENTS: Characteristics of visitor restriction policies including general visitor restriction statement, changes/updates to policies over time, exceptions to policies, and restrictions specific to COVID-19-positive patients. RESULTS: Sixty-five of the 70 hospitals reviewed had public-facing visitor restriction policies. Forty-nine of these 65 policies had general "no-visitor" statements, whereas 16 allowed at least 1 visitor to accompany all patients. Sixty-three of 65 hospitals included exceptions to their visitor restriction policies. Setting-specific exceptions included pediatrics, obstetrics/gynecology, emergency department, behavioral health, inpatient rehabilitation, surgery, and outpatient clinics. Exceptions that applied across settings included patients at end of life and patients with disabilities. CONCLUSION: Visitor restriction policies varied significantly among hospitals in this review. These variances create challenges in that their fair application may be problematic and ethical issues related to allocation may arise. Five recommendations are offered for hospitals revising or creating such policies, including that offering transparent, accessible, public-facing policies can minimize ethical dilemmas. In addition, hospitals would benefit from communicating with each other in the development of visitor policies to ensure uniformity and support patients and family members as they navigate hospital visitation.