Thibault Louis-Philippe, Bourque Claude Julie, Gaucher Nathalie, Marano Maria, Couture Karine, Saad Lydia, Chartrand Caroline, Frégeau Sandra, Doré-Bergeron Marie-Joëlle, Fiscaletti Melissa, Kleiber Niina
Department of Pediatrics, CHU Sainte-Justine, Université de Montréal, Montreal, Canada.
CHU Sainte-Justine Research Center, Université de Montréal, Montreal, Canada.
Paediatr Child Health. 2023 Jul 25;29(5):286-291. doi: 10.1093/pch/pxad051. eCollection 2024 Aug.
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.
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.
Parents identified , and 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.
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.
患有复杂疾病的儿童（CMC）患有慢性重症疾病，导致医疗脆弱性。CMC占儿童总数不到1%，却占儿科医疗支出的三分之一。加入复杂护理项目（CCP）可降低医疗资源利用率，同时提高家长满意度。需要深入了解这些变化在现实环境中如何发挥作用，以进一步支持CMC及其家庭。本研究旨在基于家长视角评估与加入CCP相关的急诊就诊次数减少和住院时间缩短的可能原因。
采用定性研究方法，通过对加拿大蒙特利尔一家大学医院中心加入CCP的CMC家长进行深入的半结构化访谈来收集数据。访谈指南由一个跨学科团队共同构建，包括一名家长合作伙伴和一名临床护士协调员。使用主题分析法归纳确定主题。
家长们确定个性化护理、家长赋权和指导是CCP带来的促成因素，这些因素有助于减少医院提供的护理利用。医疗基线状况的改善也被确定为一个促成因素，尽管不一定与项目支持相关。
在本研究中，从家长的角度来看，我们确定个性化护理、家长赋权和指导是CCP可能减少急诊就诊次数和住院时间的三种策略。家长们认为临床护士协调员在支持这些策略的实施中发挥着核心作用。
