Empowering Youth with Chronic Conditions: Enhancing Sexual and Reproductive Health Through Evidence and Engagement

Adolescence and young adulthood (ages 15-24) are critical stages where young people require access to sexual and reproductive health (SRH) information. This is especially important for youth living with chronic conditions, such as epilepsy, congenital heart disease (CHD), and systemic lupus erythematosus (SLE). As they navigate these years with such conditions, they may lack accurate SRH information to prevent negative health outcomes and may face complications that increase their risk of SRH issues. Despite the importance of addressing needs, there is limited research on the SRH needs of this group. We aim to address this gap by engaging with youth living with these conditions to identify their SRH needs, barriers to care, and existing services and programs. By understanding their perspectives, we aim to co-design knowledge translation resources and decision-making tools that improve access to accurate SRH information and support informed SRH decisions. We will use a community-based participatory approach to conduct this project in four phases. Phase one involves identifying the current literature and landscape of SRH resources for youth with epilepsy, CHD, and SLE. Phase two involves conducting individual qualitative interviews with youth who have these chronic conditions. In phase three, we will co-design knowledge translation tools with youth and stakeholders. Finally, we will test the usefulness of these resources. This project will utilize expertise from established relationships between researchers, clinicians, and youth with lived expereince. With collaboration from interdisciplinary team members, such as experts in youth health, SRH, public health, and qualitative research, we aim to address the SRH challenges of youth with chronic conditions. By giving youth a voice in the research, we intend to make a positive impact on their SRH with targeted solutions.