What This Means
This research describes a detailed study plan (protocol) for addressing a gap in sexual and reproductive health (SRH) education and care for young people aged 15-24 who live with serious chronic health conditions, specifically epilepsy, congenital heart disease, and lupus. Young people with these conditions face special health risks related to sex and reproduction — for example, some of their medications can harm a developing fetus, and pregnancy can carry higher risks for them — yet they often do not receive specialized counseling or information about these issues. Currently, there is not enough research or practical guidance available in Canada to meet their needs.
To address this gap, the research team plans to work in four stages. First, they will gather and review all existing evidence and resources on this topic. Second, they will interview 30-40 young people with these conditions to learn about their personal experiences with SRH information and care. Third, they will work directly with young people as partners to co-create practical educational tools — such as videos and infographics — that are culturally appropriate and easy to understand. Finally, they will test these tools with 60-75 participants and conduct focus groups to see how useful, acceptable, and relevant the tools are in practice.
This research suggests that involving young people directly in creating health education materials — rather than having experts design them without input — may result in tools that are more relevant, trustworthy, and useful for this community. If successful, the approach could provide a model for developing health resources for other underserved groups of young people with chronic illnesses, and the resulting tools could be shared broadly through social media, academic channels, and national conferences in Canada.