Completed Studies

Transitions for youth with chronic health conditions

Investigators and Staff: Lynn Straatman, Sheila Marshall, Susan Cadell, Grant Charles, Richard Young, Gail Andrews, Lenore Omesi [PedPalNet members who were additional co-applicants for the initial workshop and participants in the 2008 workshop: Betty Davies, Hal Siden, and Rose Steele]

The focus of this project was to explore the various transitions experienced by youths with chronic and life-threatening disabilities and health conditions by researching the physical, psychosocial, and developmental aspects of the process as well as the impact on healthcare provision and economics.

This workshop built on a workshop attendance grant from the Michael Smith Foundation for Health Research in 2005. Some of the initial workshop applicants received funding for this more recent workshop (March 2008).

Recent research has been very successful in improving the lives of children and youth by identifying and reducing risk behaviors and focusing on positive aspects of youth health and development. However, there are still important areas of youth health that are relatively unexplored. Youth with chronic health conditions have been identified as a vulnerable population whose health is unsatisfactory and/or at risk. Several studies from Canada have demonstrated that adolescents with congenital heart disease do not understand the complexity of their disease, overestimate their life expectancy, and engage in poor health choices and risky behavior.

This research workshop brought together researchers in the areas of medicine (pediatrics, adolescent, and adult), social work, nursing, and family studies to expand opportunities for research collaboration and knowledge sharing on the various transitions experienced by youth with chronic cardio-respiratory health conditions (physical, mental, and developmental). We examined issues relating to transitions in the context of: risk and resilience factors; gender differences; promoting healthy behaviors; transitioning into the adult health care system; peer relations; social factors; impact on family members; length and stage of illness; ethical issues; and cultural issues. An abstract and presentation on the findings have been presented.

Funding Agency

Canadian Institutes of Health Research (CIHR) Institutes of Circulatory and Respiratory Health.

What We Learned

Little research has been done in this field, and despite the creation of several clinical programs, there remains room for further research investigations.

What’s Next

A manuscript reporting on the proceedings of the workshop is being written. Future research proposals are being discussed.