Engaging Youth with Chronic Conditions in Sexual and Reproductive Health Research
27 February 2026
The Department is pleased to highlight Dr. Simone Lebeuf, Divisional Director for Adolescent Medicine, and her recent CIHR-funded project, Empowering Youth with Chronic Conditions: Enhancing Sexual and Reproductive Health Through Evidence and Engagement. Developed in collaboration with Dr. Salima Meherali from the Faculty of Nursing and other in the department of pediatrics, this project addresses an important and often under explored area of care: sexual and reproductive health (SRH) for youth living with epilepsy, congenital heart disease (CHD), and systemic lupus erythematosus (SLE).
Inspired by Clinical Practice
The project was shaped by frontline clinical experience in Adolescent Medicine at the Stollery Children's Hospital. Youth seen through multidisciplinary clinics - including the Female Adolescent Multidisciplinary Epilepsy (FAME) clinic led by Dr. Kassiri, and the Fontan Multidisciplinary clinic - often face complex decisions related to their sexual and reproductive health.
These conditions intersect with SRH is medically significant ways. For example, certain anti-seizure medications can reduce the effectives of hormonal contraception, while some contraceptive options may affect seizure control. Medications used to prevent blood clots can make menstrual cycles more difficult to manage. Determining safe and appropriate options can be challenging for both adolescents and healthcare providers.
Recognizing these complexities highlighted the need for research that supports clearer guidance and youth centred resources.
Why Adolescence is a Critical Window
Adolescence and young adulthood are pivotal periods for sexual and reproductive health discussions. As Dr. Lebeuf emphasizes, SRH is about far more that contraception. It includes navigating puberty, understanding how hormonal changes may influence chronic conditions, and planning for future reproductive goals.
While youth are sometimes underestimated in their ability to understand health information, experience shows that when given accurate, developmentally appropriate resources, they are fully capable of engaging in their care and participating in decision-making. Supporting autonomy during this stage builds lifelong health literacy and confidence.
Engaging with Youth
A defining feature of this project is its community-based participatory approach. Youth with lived experience will not only share their perspectives through qualitative interviews but will also contribute to co-designing knowledge translation tools and decision-support resources.
Highlighting youth voices is a foundational principle of adolescent medicine. When you are actively engaged, outcomes improve. Their insights often identify gaps and practical solutions that clinicians and researchers may not otherwise recognize.
Addressing Barriers and Looking Ahead
Youth with chronic conditions frequently face barriers to accessing accurate SRH information. They are often excluded from broader research studies, resources may not be tailored to their needs, and sexual health can often be a difficult topic to discuss during clinical encounters. Healthcare teams may also lack condition-specific guidance to fully address these concerns.
Through a structured, multi-phase approach - including a scoping review, environmental scan, qualitative interviews, and the co-development and evaluation of tools - this project aims to close these gaps.
Ultimately, the goal is to create youth-oriented resources that enhance knowledge, improve access to accurate information, and empower young people living with chronic conditions to take an active role in decisions about their health and future.