Improving Health Outcomes and Coordinating Care for Children with Complex Health and Social Needs

What this project is about:

For children born with medical complexity and their families, fragmentation of service delivery negatively impacts their health outcomes, family functioning and quality of life, and often leads to inappropriate and inefficient healthcare utilization. Most children with neurodevelopmental disability (NDD) have some medical complexity and the responsibility for care coordination falls largely to the family. This project aims to address fragmented care delivery within institutions, sectors, and health, social care and educational supports and services, which caregivers, clinicians and researchers have identified as problematic.

This research project will inform policy by assessing the Neurodevelopmental Disorders Care Coordination (NDD-CC) project implemented by the Alberta Children's Hospital in Calgary, Alberta. The NDD-CC project supports caregivers of children with a confirmed diagnosis of ADHD, and/or Autism, and a concurrent medical complexity in accessing medical, education, information, and community resources.

 Analysis of outcomes and cost-effectiveness of this project will inform decision makers about potential health benefits for children and families, and resource efficiency for the healthcare system. Findings from this study will be policy-relevant, efficient and generalizable provincially and nationally.

The study is based on the following research questions:

How does care coordination, provided by the NDD-CC project, impact care integration and coordination for families with children with complex care needs? How does care coordination, provided by the NDD-CC project impact caregiver stress and quality of life, child quality of life, and costs (from a health system and societal perspective) over time?

To examine these questions, the project works with three main objectives:

Objective 1: To conduct a mixed methods analysis of the NDD-CC project to explore and measure impact of the care coordination model on caregiver stress and quality of life.

Objective 2: To examine health service utilization patterns of the child, out-of-pocket costs and work force opportunity cost for caregivers, and cost-effectiveness of the care coordination model from a health system and societal perspective.

Objective 3: To obtain perceptions from stakeholders on the role of care coordination concerning access to services and outcomes, to inform the readiness for implementation in other sites across Canada.

Publications:

See our paper in Families in Society: The Journal of Contemporary Social Services

See our paper in Frontiers in Public Health

Presentations:

This work has been presented at the Kids Brain Health Network Annual Conferences in 2020, 2021 and 2023, at the 20th Annual Thinking Qualitatively Virtual Conference in July 2021, and at the ACHRI Retreat in December 2023.