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

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).

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Journal
Systematic Reviews
Published
2026-06-26
DOI
https://doi.org/10.1186/s13643-026-03253-3
Primary Topic
Pregnancy and Medication Impact
Type
article
Field-Weighted Citation Impact
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article

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

Simone Lebeuf, Wendy V. Norman, Janani Kassiri, Saba Nisa et al.
Systematic Reviews
Pregnancy and Medication Impact
article

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

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

Abstract

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).

Systematic Reviews
Western University (CA), Debre Berhan University (ET), University of British Columbia (CA), University of Alberta (CA), Children's Hospital of Pittsburgh (US), Sinai Health System (CA), SickKids Foundation (CA)
Good health and well-being
Openalex Percentile: Top 6%
Pregnancy and Medication Impact
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