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Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives
Louis-Philippe Thibault1,2,3, Claude Julie Bourque1,4,2,3, Nathalie Gaucher5,4,2
1Department of Pediatrics, CHU Sainte-Justine, Université de Montréal, Montreal, Canada.
Insights
Complex care programs (CCP) empower families and provide personalized support, reducing emergency department visits and hospital stays for children with medical complexity (CMC). This leads to better outcomes and parental satisfaction.
Area of Science:
- Pediatric Healthcare
- Complex Care Management
- Health Services Research
Background:
- Children with medical complexity (CMC) incur high healthcare costs, representing a significant burden on healthcare systems.
- Complex care programs (CCP) have shown promise in reducing healthcare utilization and improving parental satisfaction for CMC.
- Understanding the mechanisms behind these improvements from a parental perspective is crucial for optimizing care.
Purpose of the Study:
- To explore parental perspectives on the reasons for decreased emergency department (ED) visits and hospitalization length of stay among CMC enrolled in a CCP.
- To identify key enablers within CCPs that contribute to reduced healthcare resource utilization.
Main Methods:
- Qualitative study employing in-depth, semi-structured interviews with parents of CMC in a CCP.
- Interviews guided by a guide co-constructed with an interdisciplinary team, including a parent partner.
- Thematic analysis used to inductively identify key themes from the collected data.
Main Results:
- Parents identified personalized care, family empowerment, and guidance as key program enablers contributing to reduced hospital care utilization.
- Improvements in the child's medical baseline condition were also noted as a factor, though not directly attributed to program support.
- The clinical nurse coordinator was highlighted as central to facilitating these supportive strategies.
Conclusions:
- Personalized care, parental empowerment, and guidance are critical strategies within CCPs that can decrease ED visits and hospital length of stay.
- The role of the clinical nurse coordinator is pivotal in implementing these strategies and supporting families.
- These findings offer valuable insights for enhancing CCPs to better serve CMC and their families.
Background And Objective:
Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex care program (CCP) decreases health care resource utilization while improving parental satisfaction. An in-depth understanding of how these changes operate in real-world setting is needed to further support CMC and their families. This study aimed at assessing the possible reasons for a decrease in emergency department (ED) visits and hospitalization length of stay related to enrollment to a CCP, based on parental perspectives.
Study Design:
Using a qualitative approach, data were collected using in-depth, semi-structured interviews with parents of CMC enrolled in a CCP from a university hospital centre in Montreal, Canada. The interview guide was co-constructed by an interdisciplinary team, including a parent partner and a clinical nurse coordinator. Themes have been identified inductively, using thematic analysis.
Results:
Parents identified personalized care, family empowerment and guidance as enablers arising from the CCP that contributed to the decrease in hospital-delivered care utilization. Improvement in medical baseline condition was also identified as a contributing factor, while not necessarily related to program's support.
Conclusions:
In this study, we identified personalized care, parental empowerment, and guidance as three strategies for a CCP to potentially decrease ED visits and hospital length of stay, from the parents' perspective. Parents identified the clinical nurse coordinator as playing a central role in supporting the implementation of these strategies.
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