Co-design and evaluation of a patient navigator intervention for migrant Children and Youth with Special Healthcare Needs experiencing care transitions

Principal Investigators 

Patricia Li; Ananya Banerjee; Ariel Cherisma (parent partner); Sara Elamin
(parent partner); Shazeen Suleman;

Co-researchers

Evelyn Constantin; Meranda Nakhla

Knowledge users

Charles Hui; Irfan Dhalla; Jill Hanley

Funding

IRSC 2022-2026

Abstract

Children and youth with special healthcare needs (CYSHCN)1 represent nearly  1 in 5 children and youth in North America, and are defined as having or being  at increased risk for a chronic condition (e.g. asthma, diabetes, sickle cell disease, cerebral palsy, and developmental and behavioural disorders) that requires health and related services beyond that which are usually required by children.1-3 CYSHCN require multiple services and care providers, involving care transitions within and across care systems. Transitions in care refers to the ‘transfer of responsibility and accountability for some or all aspects of patient care [occurring] among providers, institutions, and/or sectors’4. The goal of transition care is to ensure that healthcare provision is coordinated, continuous, and undisturbed1. Failing to effectively transition across care systems may result in adverse outcomes, including unnecessary emergency room (ER) visits, increased hospitalizations, delays or duplication of services, family dissatisfaction, caregiver stress.5-9  

Our proposal focuses on migrant families, including immigrant, refugee, and undocumented families. Compared to non-migrant families, families of migrant CYSHCN frequently report increased unmet needs and barriers to obtaining appropriate healthcare, putting them at a heightened risk for gaps in care transitions.10-12 The most common barriers involve structural racism, language, and adverse experiences in navigating a complex and culturally unsafe healthcare system.9,13-18 Using a socioecological model,19,20 barriers during transitions in care for migrant CYSHCN1 can be classified into five levels (Appendix A): structural, institutional/health system, community, family, and child. 

Through qualitative studies from our team and others around the world, which have included the voices of migrant families with CYSHCN and other multi-stakeholders, patient navigator programs have emerged as a promising solution to address barriers during transitions in care.12,14,21-24 A patient navigator’s overall function is to reduce care barriers. They work with patients to identify and address care barriers and access recommended care.25-27 A systematic scoping review identified 29 published navigator interventions for immigrant and ethno-racial minorities and reported improvements in health outcomes, such as glucose control in type 2 diabetes. However, no studies have focused on migrant children and youth.28 Given the many unique obstacles faced by migrant CYSHCN in their transitions in care, resulting in significant morbidity, it is imperative that interventions be targeted for this highly marginalized population.  

We therefore propose a randomized controlled trial (RCT) with an embedded qualitative study to evaluate a patient navigator intervention that will target modifiable barriers during transitions between acute, secondary, primary, and community care through the navigator’s three core roles (Appendix B): 1) Navigating the healthcare system; 2) Care coordination; and 3) Cultural safety.