Breneol Sydney, Curran Janet A, Macdonald Marilyn, Montelpare William, Stewart Samuel A, Martin-Misener Ruth, Vine Jocelyn
School of Nursing, Faculty of Health, Dalhousie University, Halifax, NS, Canada.
Strengthening Transitions in Care, Izaac Walton Killam Health Centre, Halifax, NS, Canada.
JMIR Res Protoc. 2022 Apr 6;11(4):e33426. doi: 10.2196/33426.
Ongoing developments in the medical field have improved survival rates and long-term management of children with complex chronic health conditions. While the number of children with medical complexity is small, they use a significant amount of health resources across various health settings and sectors. Research to date exploring this pediatric population has relied primarily on quantitative or qualitative data alone, leaving significant gaps in our understanding of this population.
The objective of this research is to use health administrative and family-reported data to gain an in-depth understanding of patterns of health resource use and health care needs of children with medical complexity and their families in the Canadian Maritimes.
An explanatory sequential mixed methods design will be used to achieve our research objective. Phase 1 of this research will leverage the use of health administrative data to examine the prevalence and health service use of children with medical complexity. Phase 2 will use case study methods to collect multiple sources of family-reported data to generate a greater understanding of their experiences, health resource use, and health care needs. Two cases will be developed in each of the 3 provinces. Cases will be developed through semistructured interviews with families and their health care providers and health resource journaling. Findings will be triangulated from phase 1 and 2 using a joint display table to visually depict the convergence and divergence between the quantitative and qualitative findings. This triangulation will result in a comprehensive and in-depth understanding into the population of children with medical complexity.
This study will be completed in May 2022. Findings from each phase of the research and integration of the two will be reported in full in 2022.
There is a current disconnect between the Canadian health care system and the needs of children with medical complexity and their families. By combining health administrative and family-reported data, this study will unveil critical information about children with medical complexity and their families to more efficiently and effectively meet their health care needs. Results from this research will be the first step in designing patient-oriented health policies and programs to improve the health care experiences, health system use, and health outcomes of children with medical complexity and their families.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33426.
医学领域的不断发展提高了患有复杂慢性健康状况儿童的存活率和长期管理水平。虽然患有医学复杂性疾病的儿童数量较少，但他们在各个健康环境和部门中消耗了大量的卫生资源。迄今为止，探索这一儿科人群的研究主要仅依赖定量或定性数据，这使得我们对这一人群的理解存在重大差距。
本研究的目的是利用卫生行政数据和家庭报告数据，深入了解加拿大海洋省份患有医学复杂性疾病的儿童及其家庭的卫生资源使用模式和医疗保健需求。
将采用解释性序列混合方法设计来实现我们的研究目标。本研究的第一阶段将利用卫生行政数据来检查患有医学复杂性疾病儿童的患病率和卫生服务使用情况。第二阶段将使用案例研究方法收集多源家庭报告数据，以更深入地了解他们的经历、卫生资源使用情况和医疗保健需求。三个省份中的每个省份将开发两个案例。案例将通过与家庭及其医疗保健提供者的半结构化访谈以及卫生资源日志记录来开发。研究结果将使用联合展示表从第一阶段和第二阶段进行三角验证，以直观地描绘定量和定性结果之间的趋同和差异。这种三角验证将使我们对患有医学复杂性疾病的儿童人群有全面而深入的了解。
本研究将于2022年5月完成。研究各阶段的结果以及两者的整合将在2022年全面报告。
目前加拿大医疗保健系统与患有医学复杂性疾病的儿童及其家庭的需求之间存在脱节。通过结合卫生行政数据和家庭报告数据，本研究将揭示有关患有医学复杂性疾病的儿童及其家庭的关键信息，以便更高效、有效地满足他们的医疗保健需求。本研究结果将是设计以患者为导向的卫生政策和项目的第一步，以改善患有医学复杂性疾病的儿童及其家庭的医疗保健体验、卫生系统使用情况和健康结果。
国际注册报告识别码（IRRID）：DERR1-10.2196/33426
