Adrift Between Systems: Transition Experiences of Youth With Medical Complexity and Their Families

Last modified by Jose Gauthier on 2020/10/21 22:02

Within the transition to adulthood, youth also undergo distinct, interrelated transitions or “transfers” from children’s to adult heath, education, and social services. This service transition is particularly difficult for youth with medical complexity (YMC) and their families because of the sheer number of services that they access. Service disruptions can have profound impacts on YMC and their families, potentially leading to an unsuccessful transition to adulthood. This presentation will provide a synthesis of qualitative literature exploring how YMC and their families experience the transition to adulthood and transfer to adult services. These findings will be positioned within the Canadian context and implications for practice, policy, and research will be discussed.

Following this webinar, participants will be able to:
- Describe how YMC and their families experience the transition to adulthood, highlighting the different aspects of their lives that are impacted by transition.
- Identify contextual factors that influence transition experiences.
- Understand the implications of the findings for practice, policy, and research.

Primary Audiences:
Front-line service providers,
Senior leaders,
Policy makers,
Patient/Family partners/advocates,


Lin-Li_small - LIN LI.jpg Lin Li is a PhD student in the School of Nursing at McMaster University and a Registered Nurse at McMaster Children’s Hospital on the Pediatric Medicine and Complex Care Inpatient Unit. Her clinical experiences working with children and youth with medical complexity have led her to pursue research aimed at improving the health and well-being of these children, youth, and their families. Her doctoral work focuses on supporting the transition to adulthood and transfer to adult services for youth with medical complexity and their families. Twitter: @LinLi_RN

Marissa-Bird_small - LIN LI.JPG Marissa Bird is a PhD student in the School of Nursing at McMaster University studying digital health interventions for children with medical complexity and their families. Marissa’s work focuses on enabling children with medical complexity to be cared for safely at home by leveraging digital technology to connect families with healthcare providers, remotely. Her doctoral research is supported by a CIHR Banting and Best Doctoral Award as well as the Norman Saunders Complex Care Initiative from The Hospital for Sick Children. Twitter: @MarissaGBird

Jan-Willem-Gorter_small - LIN LI.jpg Dr. Jan Willem Gorter, MD, PhD, FRCP(C) Physical Medicine and Rehabilitation, is a Professor in the Department of Pediatrics. He is Director and a scientist at CanChild Centre for Childhood Disability Research ( and holds the Scotiabank Chair in Child Health Research at McMaster University. He is visiting professor in Pediatric Rehabilitation in Utrecht, The Netherlands.Jan Willem has training in pediatric and adult rehabilitation medicine (physiatry) with a special clinical and research interest in transitional services and life course health development. His research focuses on the themes of family, function, friends & fun (daily activities and participation) with a special interest in physical activity promotion (fitness) and in transitions from adolescence to adulthood (future).

Jan Willem’s vision is to enhance the physical health, mental health and well-being of children and youth with disabilities/chronic health conditions and their families through interventions carefully tailored, timed and integrated into health services. He leads a research program that advances the knowledge of health development of people with disabilities, and that enhances research capacity through mentoring and training. Jan Willem's research is frequently published in peer-reviewed articles in leading journals. Twitter: @Dr_Gorter

Created by Logan Green on 2020/08/26 20:45