Empowering youth with chronic conditions: enhancing sexual and reproductive health through evidence and engagement - protocol for a co-design approach.

Authors

Salima Meherali, Saba Nisa, Simone Lebeuf, Lisa Hartling, Janani Kassiri, Michael Khoury, Laura Kirkpatrick, Deborah Levy, Wendy V Norman, Kambiz Norozi, Shannon Scott, Anam Shahil-Feroz, Amanda Steiman, Ashley Vandermorris

Published in

BMJ open. Volume 16. Issue 9. Pages e125304. Sep 21, 2026. Epub Sep 21, 2026.

Abstract

Adolescence and young adulthood (ages 15-24) are critical developmental periods that require comprehensive sexual and reproductive health (SRH) education. Youth with chronic conditions like epilepsy, congenital heart disease (CHD) and systemic lupus erythematosus (SLE) face unique SRH challenges, such as teratogenic medication risks and higher maternal mortality, yet often lack specialised counselling. A significant evidence gap exists in Canada regarding the SRH needs and access to care for this population. To address the SRH needs of youth with epilepsy, CHD and SLE, this project will apply community-based participatory research (CBPR) principles to meaningfully engage youth and co-design culturally relevant knowledge translation tools that enhance SRH information and care for these youth.
This study employs a four-stage CBPR and integrated knowledge translation (iKT) approach. Stage 1 involves a scoping review and environmental scan to map existing SRH evidence and resources. Stage 2 uses semistructured qualitative interviews (n=30-40) with youth with chronic conditions to explore lived experiences regarding SRH needs and services. Stage 3 uses CBPR and human-centred design (HCD) to co-create tailored KT tools (eg, infographics, videos) with youth partners. Stage 4 is a mixed-methods evaluation involving a usability survey (n=60-75) and nine focus group discussions to assess the tools' potential usability, acceptability, perceived usefulness and relevance.
Ethical approval has been obtained from the University of Alberta Research Ethics Board (Pro00165408). Informed consent will be secured from all participants. Dissemination will include peer-reviewed publications, academic presentations, social media content (TikTok, Instagram) and a national Canadian conference.
The protocol for the scoping review is registered in the Open Science Framework (https://doi.org/10.17605/OSF.IO/5SWTY).

PMID:
42767753
Bibliographic data and abstract were imported from PubMed on 22 Sep 2026.

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