Caregiver perceptions of in-home COVID-19 testing for children with medical complexity: a qualitative study.

BACKGROUND: In-home direct antigen rapid testing (DART) plays a major role in COVID-19 mitigation and policy. However, perceptions of DART within high-risk, intellectually impaired child populations are unknown. This lack of research could negatively influence DART uptake and utility among those who stand to benefit most from DART. The purpose of this study was to describe caregivers' perceptions of an in-home COVID-19 DART regimen in children with medical complexity, including the benefits and limitations of DART use. METHODS: This qualitative study was a subproject of the NIH Rapid Acceleration of Diagnostics Underserved Populations research program at the University of Wisconsin. We combined survey data and the thematic analysis of semi-structured interview data to understand caregivers' perceptions of in-home COVID-19 testing and motivators to perform testing. Caregivers of children with medical complexity were recruited from the Pediatric Complex Care Program at the University of Wisconsin (PCCP). Data were collected between May and August 2021. RESULTS: Among n = 20 caregivers, 16/20 (80%) of their children had neurologic conditions and 12/20 (60%) used home oxygen. Survey data revealed that the largest caregiver motivators to test their child were to get early treatment if positive (18/20 [90%] of respondents agreed) and to let the child's school know if the child was safe to attend (17/20 [85%] agreed). Demotivators to testing included that the child could still get COVID-19 later (7/20 [35%] agreed), and the need for officials to reach out to close contacts (6/20 [30%] agreed). From interview data, four overarching themes described perceptions of in-home COVID-19 testing: Caregivers perceived DART on a spectrum of 1) benign to traumatic and 2) simple to complex. Caregivers varied in the 3) extent to which DART contributed to their peace of mind and 4) implications of test results for their child. CONCLUSIONS: Although participants often described DART as easy to administer and contributing to peace of mind, they also faced critical challenges and limitations using DART. Future research should investigate how to minimize the complexity of DART within high-risk populations, while leveraging DART to facilitate safe school attendance for children with medical complexity and reduce caregiver burden.

Priorities for Safer In-Person School for Children With Medical Complexity During COVID-19.

OBJECTIVES: To establish statewide consensus priorities for safer in-person school for children with medical complexity (CMC) during the coronavirus disease 2019 (COVID-19) pandemic using a rapid, replicable, and transparent priority-setting method. METHODS: We adapted the Child Health and Nutrition Research Initiative Method, which allows for crowdsourcing ideas from diverse stakeholders and engages technical experts in prioritizing these ideas using predefined scoring criteria. Crowdsourcing surveys solicited ideas from CMC families, school staff, clinicians and administrators through statewide distribution groups/listservs using the prompt: "It is safe for children with complex health issues and those around them (families, teachers, classmates, etc.) to go to school in-person during the COVID-19 pandemic if/when…" Ideas were aggregated and synthesized into a unique list of candidate priorities. Thirty-four experts then scored each candidate priority against 5 criteria (equity, impact on COVID-19, practicality, sustainability, and cost) using a 5-point Likert scale. Scores were weighted and predefined thresholds applied to identify consensus priorities. RESULTS: From May to June 2021, 460 stakeholders contributed 1166 ideas resulting in 87 candidate priorities. After applying weighted expert scores, 10 consensus CMC-specific priorities exceeded predetermined thresholds. These priorities centered on integrating COVID-19 safety and respiratory action planning into individualized education plans, educating school communities about CMC's unique COVID-19 risks, using medical equipment safely, maintaining curricular flexibility, ensuring masking and vaccination, assigning seats during transportation, and availability of testing and medical staff at school. CONCLUSIONS: Priorities for CMC, identified by statewide stakeholders, complement and extend existing recommendations. These priorities can guide implementation efforts to support safer in-person education for CMC.