Birth includes us: Development of a community-led survey to capture experiences of pregnancy care among LGBTQ2S+ families

Molly R Altman; Kase Cragg; Teresa van Winkle; Zoë Julian; Juno Obedin-Maliver; Lesley A Tarasoff; Meghan K Eagen-Torkko; Brittany L Ferrell; Nicholas A Rubashkin; Indra Lusero; Saraswathi Vedam

doi:10.1111/birt.12704

Birth includes us: Development of a community-led survey to capture experiences of pregnancy care among LGBTQ2S+ families

Birth. 2023 Mar;50(1):109-119. doi: 10.1111/birt.12704. Epub 2023 Jan 10.

Authors

Affiliations

¹ Department of Child, Family, and Population Health Nursing, University of Washington, Seattle, Washington, USA.
² Department of Health Systems and Population Health, School of Public Health, University of Washington, Seattle, Washington, USA.
³ Department of Obstetrics and Gynecology, Wellstar Kennestone Regional Medical Center, Marietta, Georgia, USA.
⁴ Department of Obstetrics and Gynecology, Stanford University School of Medicine, Stanford, California, USA.
⁵ Department of Epidemiology and Population Health, Stanford University School of Medicine, Stanford, California, USA.
⁶ Department of Health & Society, University of Toronto Scarborough, Scarborough, Ontario, Canada.
⁷ University of Washington Bothell School of Nursing & Health Studies, Bothell, Washington, USA.
⁸ Washington University in St. Louis, Goldfarb School of Nursing, St. Louis, Missouri, USA.
⁹ Division of Hospitalist Medicine, Department of Obstetrics, Gynecology& Reproductive Sciences, Institute for Global Health Sciences, University of California San Francisco, San Francisco, California, USA.
¹⁰ Elephant Circle, Denver, Colorado, USA.
¹¹ Birth Place Lab, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.

Abstract

Background: Limited research captures the intersectional and nuanced experiences of lesbian, gay, bisexual, transgender, queer, two-spirit, and other sexual and gender-minoritized (LGBTQ2S+) people when accessing perinatal care services, including care for pregnancy, birth, abortion, and/or pregnancy loss.

Methods: We describe the participatory research methods used to develop the Birth Includes Us survey, an online survey study to capture experiences of respectful perinatal care for LGBTQ2S+ individuals. From 2019 to 2021, our research team in collaboration with a multi-stakeholder Community Steering Council identified, adapted, and/or designed survey items which were reviewed and then content validated by community members with lived experience.

Results: The final survey instrument spans the perinatal care experience, from preconception to early parenthood, and includes items to capture experiences of care across different pregnancy roles (eg, pregnant person, partner/co-parent, intended parent using surrogacy) and pregnancy outcomes (eg, live birth, stillbirth, miscarriage, and abortion). Three validated measures of respectful perinatal care are included, as well as measures to assess experiences of racism, discrimination, and bias across intersections of identity.

Discussion and conclusions: By centering diverse perspectives in the review process, the Birth Includes Us instrument is the first survey to assess the range of experiences within LGBTQ2S+ communities. This instrument is ready for implementation in studies that seek to examine geographic and identity-based perinatal health outcomes and care experiences among LGBTQ2S+ people.

Keywords: LGBTQ persons; community-based participatory research; pregnancy; respectful care.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Female
Homosexuality, Female*
Humans
Parturition
Pregnancy
Sexual Behavior
Sexual and Gender Minorities*
Transgender Persons*

Grants and funding

K12 HD001262/HD/NICHD NIH HHS/United States