Objective <p>This scoping review aims to identify, map, and synthesize evidence on the sexual and reproductive health (SRH) information needs of youth 15–24&#xa0;years living with epilepsy, congenital heart disease (CHD), or systemic lupus erythematosus (SLE) in the USA and Canada, and identify barriers and facilitators to access to SRH information and services.</p> Introduction <p>Youth and young adults with chronic health conditions face elevated and condition-specific reproductive risks. Among youth with epilepsy, interactions between seizures, antiseizure medications, hormones, and hormonal contraceptives increase the risk of unintended pregnancy. For youth with congenital heart disease, a substantial proportion of pregnancies are associated with cardiac complications, and contraceptive counseling is often delayed or inconsistently delivered. In systemic lupus erythematosus, limited contraceptive options and teratogenic therapies further heighten reproductive risk, with active disease associated with significantly increased risks of preterm birth and pre-eclampsia.</p> <p>Despite these well-documented risks, youth with chronic conditions frequently report unmet SRH information needs related to contraception, medication safety, fertility, and pregnancy planning. Evidence remains fragmented across specialties and largely focused on pregnancy outcomes rather than youth-centered informational needs and access to services. Our preliminary search did not identify a comprehensive scoping review that maps sexual and reproductive health (SRH) information needs, barriers, and facilitators across these three chronic conditions among young people in North America.</p> <p>Given the anticipated heterogeneity in study designs, populations, and outcomes, a scoping review is appropriate for characterizing the breadth and nature of the evidence base.</p> Inclusion criteria <p>Eligible sources will include empirical studies from the USA and Canada involving youth aged 15–24&#xa0;years diagnosed with epilepsy, CHD, or SLE. Studies must address SRH information needs and/or barriers and facilitators to accessing SRH information or services. Youth-reported needs will be distinguished from caregiver or provider perspectives, which will be included only when directly relevant to youth experiences. All primary qualitative, quantitative, and mixed-methods designs, as well as empirical grey literature, will be considered.</p> Methods <p>This review will follow Joanna Briggs Institute (JBI) methodology for scoping reviews and will be reported in accordance with the PRISMA-ScR guidelines. A three-step search strategy will be implemented across MEDLINE, Embase, CINAHL, PsycINFO, Scopus, Web of Science, CENTRAL, and targeted grey literature sources from the inception of each database to the final search date. Two reviewers will independently screen records and extract data using a piloted standardized tool. Results will be synthesized descriptively and analyzed using manifest-level content analysis to categorize SRH information needs, barriers, and facilitators. Findings will be mapped across socio-ecological levels and developmental stages (15–19 and 20–24&#xa0;years), where data permit.</p> Systematic review registration <p>This protocol is registered with the Open Science Framework (<a href="https://doi.org/10.17605/OSF.IO/5SWTY">https://doi.org/10.17605/OSF.IO/5SWTY</a>).</p>

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Sexual and reproductive health information needs of young adults with chronic conditions: a scoping review protocol

  • Salima Meherali,
  • Yared Asmare Aynalem,
  • Saba Nisa,
  • Claire Tellier,
  • Megan Kennedy,
  • Lisa Hartling,
  • Shannon Scott,
  • Anam Shahil-Feroz,
  • Ashley Vandermorris,
  • Amanda Steiman,
  • Janani Kassiri,
  • Deborah Levy,
  • Kambiz Norozi,
  • Laura Kirkpatrick,
  • Wendy V. Norman,
  • Michael Khoury,
  • Simone Lebeuf

摘要

Objective

This scoping review aims to identify, map, and synthesize evidence on the sexual and reproductive health (SRH) information needs of youth 15–24 years living with epilepsy, congenital heart disease (CHD), or systemic lupus erythematosus (SLE) in the USA and Canada, and identify barriers and facilitators to access to SRH information and services.

Introduction

Youth and young adults with chronic health conditions face elevated and condition-specific reproductive risks. Among youth with epilepsy, interactions between seizures, antiseizure medications, hormones, and hormonal contraceptives increase the risk of unintended pregnancy. For youth with congenital heart disease, a substantial proportion of pregnancies are associated with cardiac complications, and contraceptive counseling is often delayed or inconsistently delivered. In systemic lupus erythematosus, limited contraceptive options and teratogenic therapies further heighten reproductive risk, with active disease associated with significantly increased risks of preterm birth and pre-eclampsia.

Despite these well-documented risks, youth with chronic conditions frequently report unmet SRH information needs related to contraception, medication safety, fertility, and pregnancy planning. Evidence remains fragmented across specialties and largely focused on pregnancy outcomes rather than youth-centered informational needs and access to services. Our preliminary search did not identify a comprehensive scoping review that maps sexual and reproductive health (SRH) information needs, barriers, and facilitators across these three chronic conditions among young people in North America.

Given the anticipated heterogeneity in study designs, populations, and outcomes, a scoping review is appropriate for characterizing the breadth and nature of the evidence base.

Inclusion criteria

Eligible sources will include empirical studies from the USA and Canada involving youth aged 15–24 years diagnosed with epilepsy, CHD, or SLE. Studies must address SRH information needs and/or barriers and facilitators to accessing SRH information or services. Youth-reported needs will be distinguished from caregiver or provider perspectives, which will be included only when directly relevant to youth experiences. All primary qualitative, quantitative, and mixed-methods designs, as well as empirical grey literature, will be considered.

Methods

This review will follow Joanna Briggs Institute (JBI) methodology for scoping reviews and will be reported in accordance with the PRISMA-ScR guidelines. A three-step search strategy will be implemented across MEDLINE, Embase, CINAHL, PsycINFO, Scopus, Web of Science, CENTRAL, and targeted grey literature sources from the inception of each database to the final search date. Two reviewers will independently screen records and extract data using a piloted standardized tool. Results will be synthesized descriptively and analyzed using manifest-level content analysis to categorize SRH information needs, barriers, and facilitators. Findings will be mapped across socio-ecological levels and developmental stages (15–19 and 20–24 years), where data permit.

Systematic review registration

This protocol is registered with the Open Science Framework (https://doi.org/10.17605/OSF.IO/5SWTY).