Characterizing the role of genetic counsellors in a care coordination setting for children with medical complexity and their families

It is challenging for children and families who have complex medical needs to get all the support they need from the healthcare system. This is true for concerns about mental health, caregiver help, and services that connect different parts of their care. Families also face challenges when they need genetic services. Genetic services are typically available at large hospitals in well-populated cities. They can involve long wait times and other barriers. This project will look at how genetic counsellors can help children with complex medical needs and their families based at Canuck Place Children’s Hospice.

Genetic counsellors are healthcare professionals who have training in both genetics and providing emotional support. This means they can help explain the science of complicated medical conditions and support families with the challenges they can face. This BC-based study will explore what the best way to include genetic counsellors as part of the care team that helps organize and support families of children with complex medical needs. This will include:
1) looking at what we already know from research about clinical genetics services and care coordination,
2) talking with children and their families about their experiences with genetic care, and
3) working with families and healthcare professionals to design a new way to include genetic counsellors in the care team.

The goal of this work will be to improve care for children with complex medical needs by making genetic support more accessible, more personalized, and better connected to the other care they receive throughout their journey. This project is funded by the Health Systems Impact Fellowship which is supported by the Canadian Institutes of Health Research (Canadian Institute of Health Research), Michale Smith Health Research BC, and Canuck Place Children’s Hospice (CPCH). The project is led by Dr. Tasha Wainstein, Postdoctoral Fellow in the School of Nursing at The University of British Columbia. Dr. Wainstein will be supported by a multidisciplinary team of experts including Dr. Hal Siden, and Dr. Jennifer Baumbusch.