Children with medical complexity care journey during COVID-19 from providers perspective: a qualitative study

Background: Children with medical complexity (CMC) are children who have a range of chronic physical, developmental, and behavioral conditions. CMC is a vulnerable population that requires special care and receives support from multidisciplinary teams. The COVID-19 pandemic reshaped healthcare practices, with long-term consequences. CMC was particularly impacted, encountering medical, behavioral, and social challenges due to disruptions in care and pandemic-related restrictions. This qualitative study aims to understand the impact of the COVID-19 pandemic on the CMC care journey from a healthcare provider’s perspective. Understanding COVID-19 challenges will help refine healthcare strategies, improve patient safety, and ensure CMC care meets their unique needs. Methods: In this qualitative study, we captured views from various providers who cared for CMC during the pandemic. We conducted semi-structured interviews between May 2023 and December 2023. In total, we had 24 healthcare providers participate in the study, including 4 Hospitalists, 13 Specialists, 2 Outpatient Pediatricians, and 5 Home Nurses. Interviews were audio recorded to ensure accuracy in transcription and analysis. We used an inductive thematic analysis with a codebook approach for our coding process. Results: As a result of inductive thematic analysis, ten primary themes emerged from the data related to CMC care challenges during the COVID-19 pandemic from the healthcare providers’ perspective. Each theme consists of a set of subthemes. Themes are clustered into three main categories: (1) Access and Continuity of Care, (2) Families, Staff, and Collaborative Care, and (3) Infection Risk and Prevention Strategies. Conclusions: This study highlights the challenges of caring for CMC during the COVID-19 pandemic, focusing on system vulnerabilities and the resilience of healthcare providers and families. It shows the need for family-centered care, better telehealth integration, and comprehensive support for providers.