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Transition to Adulthood During COVID-19

TRANSITION TO ADULTHOOD DURING COVID-19: Learning from Canadian Youth with Special Healthcare Needs and their Families to Foster Effective Transitional Care Interventions

The COVID-19 pandemic affected our usual way of living. For Youth with Special Health Care Needs (YSHCN), there was the added fear of COVID-19 making them sick, disrupting their usual routines (especially school), missing out on usual health, social supports, and/or services, and social opportunities. The purpose of this research study was to learn about the positive and negative impacts of the COVID-19 pandemic on the health of Canadian YSHCN as they transitioned from pediatric to adult health services. Understanding how the pandemic has influenced YSHCN during this transition is an opportunity for improving healthcare journeys and outcomes.

The idea for this research study grew out of conversations in the Children’s Healthcare Canada Health Hub in Transition (Transition Hub). From the Transition Hub, a working group of young adults, parents, and researchers partnered to learn about the impact of the COVID-19 pandemic on YSHCN aged 16-24 years during their transition to adult care services. Types of special healthcare needs were developmental, physical, or mental health conditions. Our focus was on what we could learn to help improve future healthcare transition experiences.

This study had three steps:

Interviews with 21 Canadian YSHCN and families across 4 provinces in English and French. The purpose was to understand the healthcare transition pandemic experience and lessons learned. After the interviews we conducted a rapid analysis of interview transcripts and a review of the literature to help create the survey for the next step.

Survey of 516 Canadian YSHCN and families across 10 provinces and 1 territory in English and French. The purpose was to come up with recommendations and priorities to help improve healthcare transition. After the survey, we conducted a rapid analysis of survey responses to identify themes and ideas to discuss in the virtual town hall for the next step.

Virtual Town Halls in English and French with over 55 attendees across 8 provinces. A diversity of perspectives was represented in the Town Hall discussions, including parents and young people with special healthcare needs, allied health professionals, researchers, and educators. In the Town Halls, we discussed and expanded on the themes that came up in the interviews and survey. The purpose was to work together to help understand the study findings, and to think about practical actions and priorities.

The priority areas for healthcare transition identified through this study are:

Coordinated and continuous care

Flexibility in delivery and transfer of care

Gradual transition preparation

Collaborative and patient-centered care

Our multi-phased, patient-oriented design ensured that different groups were involved throughout the project. Carefully working with a diverse and representative group of consumers of care in a variety of ways is essential to informing relevant co-developed plans, advocacy efforts and policies. This study offers practical guidance for Canadian patients and public (e.g. YSHCN and their families, policy makers, health system leaders, etc.) on how we can improve healthcare transition. At the end of this study, we came up with the following ideas to help us move forward with making changes in the priority areas:

Mapping the people in the system to see which groups are already working together and where connections need to be made.
Finding and connecting with people who are already doing some of this work or who are in a good position to help us with this work.
Balancing working on long-term changes like system-level changes with more short-term changes (e.g. by finding, continuing, or building on ideas that are already working well)
Looking into how provincial and territorial governments handle transition, looking for best practices and thinking about how these ideas can be applied in other areas (e.g. by finding the leaders and decision-makers who support this work and can act on changes).
Continuing to include many different groups in the work to understand healthcare transition experiences and how we can improve.

The priorities, recommendations, and strategies that were identified through this study can be used to inform professional practice, policy, guideline development, and program changes. The study aimed to learn from positive and negative healthcare transition experiences during the COVID-19 pandemic to inform the development of the best possible healthcare for YSHCN. We aim to support and reduce the burden on YSHCN and families when planning and undergoing transitions to adult healthcare systems. Findings suggest that YSHCN and their families want consistency and continuity and assurance that their best interest is central to their care.

Knowledge translation, advocacy, and policy initiatives are ongoing, and include plans for a research paper, project report video, and webinar to share our findings more widely. We will continue the conversation in the context of the Canadian Transition Hub to determine next steps in this program of work.

View the
Project Report View the
Webinar Recording Contact Barb Galuppi
for more information

Nominated Principal Investigator: Dr. Anne Fournier (CHU Sainte-Justine)
Co-Principal Investigators: Dr. Jan Willem Gorter (McMaster University) & Dr. Karen Cook (Athabasca University)
Principal Knowledge User: Ms. Paula Robeson (Children’s Healthcare Canada)
Funding Source: Canadian Institutes of Health Research (UIP 178856)