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Children with medical complexity care journey during COVID-19 from providers perspective: a qualitative study
Onur Asan1, Farah Elkourdi2, Ilse Super2
1Department of Systems and Enterprises, Stevens Institute of Technology, 1 Castle Point Terrace, Hoboken, NJ, 07030, USA. oasan@stevens.edu.
Insights
The COVID-19 pandemic significantly challenged healthcare for children with medical complexity (CMC), impacting care access and continuity. Healthcare providers adapted, highlighting needs for family-centered approaches and improved telehealth integration for vulnerable pediatric populations.
Area of Science:
- Pediatric Healthcare
- Public Health Crises
- Complex Care Management
Background:
- Children with medical complexity (CMC) face unique health challenges and require specialized multidisciplinary care.
- The COVID-19 pandemic disrupted established healthcare practices, disproportionately affecting CMC and their families.
- Understanding these pandemic-induced challenges is crucial for refining care strategies and ensuring patient safety for CMC.
Purpose of the Study:
- To explore the impact of the COVID-19 pandemic on the care journey of children with medical complexity (CMC).
- To gather insights from healthcare providers on the challenges faced in delivering care to CMC during the pandemic.
- To inform future healthcare strategies for improved CMC care, patient safety, and provider support.
Main Methods:
- Qualitative study employing semi-structured interviews with 24 healthcare providers (hospitalists, specialists, pediatricians, home nurses) caring for CMC.
- Interviews conducted between May and December 2023, audio-recorded for accurate transcription and analysis.
- Inductive thematic analysis with a codebook approach used to identify key themes and subthemes.
Main Results:
- Ten primary themes emerged regarding CMC care challenges during the COVID-19 pandemic from the healthcare providers' perspective.
- Themes were categorized into: (1) Access and Continuity of Care, (2) Families, Staff, and Collaborative Care, and (3) Infection Risk and Prevention Strategies.
- Analysis revealed system vulnerabilities and the resilience of healthcare providers and families in navigating pandemic-related disruptions.
Conclusions:
- The COVID-19 pandemic presented significant challenges to the care of children with medical complexity (CMC).
- Findings underscore the importance of family-centered care models and enhanced integration of telehealth services.
- There is a critical need for robust support systems for healthcare providers managing the care of CMC, especially during public health crises.
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.
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