Children with Medical Complexity in the Maritimes: A Mixed Methods Study

Abstract

Introduction: Developments in the medical field have improved the survival rates and management of children with complex chronic conditions. To date, policy and program design has primarily relied on findings from either quantitative or qualitative research. However, this may leave gaps in our knowledge about how available resources meet the needs of children with medical complexity. Family-reported unmet care needs, financial challenges, and increased stress levels signal the need for improvements to pediatric complex care. The objective of this research was to use health administrative and family-reported data to gain an in-depth understanding of the prevalence, health resource use, and needs of children with medical complexity and their families in the Canadian Maritimes. Methods: This study used a three-phased explanatory sequential mixed methods design. In Phase one, a secondary data analysis of health administrative data was used to examine the prevalence and health resource use of children with medical complexity. In Phase two, five case studies were developed from multiple sources of family-reported data to generate a greater understanding of their experiences, health resource use, and needs. In phase three, a joint display table was used to triangulate quantitative and qualitative findings to result in a comprehensive understanding into the population of children with medical complexity. Results: A total of 3058 children/youth were identified as having medical complexity, representing 0.88% of the Maritime pediatric population. Health data revealed a higher likelihood of outpatient, hospital, and emergency care encounters for children with medical complexity in comparison to children without medical complexity. Case study findings illustrated numerous resources interwoven across the health, social, community, and education sectors that families use to attend to their care needs. Families reported unmet care needs in areas such as care coordination, financial funding supports, and respite care. Triangulation of findings illuminated the extent of resource use that exists in the shadows of the health system. Conclusions: There is a disconnect between current health systems and the needs of children with medical complexity and their families. By combining health administrative and family-reported data, this study unveiled critical information to inform potential strategic directions to improve pediatric complex care.