283 - Unmasking their Voices: Challenges Faced by Families of Children with Medical Complexity throughout the COVID Pandemic

Poster Number: 283
Publication Number: 283.384

Background: Insight on the impact of the COVID-19 pandemic on children with medical complexity (CMC) and their families continues to emerge in the literature. Studies have shown that changes in public policy and healthcare delivery impeded access to therapies and specialty care, disrupted the supply of equipment and medication, and interrupted in-home care in the early pandemic.

Objective: Our study aims to expand upon previous cross-sectional studies to explore impacts throughout the pandemic using a longitudinal approach on a larger sample size.

Design/Methods: Semi-structured interviews focusing on the impact of COVID-19 were conducted with CMC and family caregivers. Along with these responses, other mentions of “COVID” or “pandemic” were extracted from Children’s Wisconsin Complex Care Program (CCP) visit notes from 3/2020 to 9/2021. Using a modified Delphi approach, four reviewers individually reviewed 10% of responses to identify themes. A coding guide was developed to code remaining responses. Thematic prevalence over time was recorded.

Results: 1515 responses were recorded from 2080 encounters of 733 unique patients, a response rate of 72.8% (1515/2080). Themes are outlined in Table 1. Negative impacts on Therapies (52%), Delayed care (36%), COVID precautions (31%) and Employment/finance (25%) were most prevalent in the early pandemic and decreased over time. In late 2020 and early 2021, School/daycare (46%) and COVID infection (18%) peaked. In mid-to-late 2021, most themes decreased in prevalence; however, Therapies and School/daycare were still mentioned >30% of the time even after mandated precautions ended. Concerns for child’s health were noted throughout the entire 18-month course (10-14%).

Conclusion(s): Families of CMC reported the most adverse impacts early in the pandemic, with Wisconsin’s Safer at Home Order and mask mandates affecting therapies, school/daycare, and in-home care. As stay at home orders ended and vaccines became available, families were able to decrease COVID restrictions. While we saw increasing amounts of COVID infection, there seemed to be improvements in other areas, such as returning to school, better mental health, and return of in-home supports. Notably, many themes like school, therapies, and concern for child’s health remained impactful for families even after restrictions ended in late 2021. These results highlight the significant baseline challenges experienced by CMC and their families and the need to take their unique complexity into consideration to improve care delivery, especially in disaster planning.