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

Abstract

AbstractBackgroundLimited 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.MethodsWe 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.ResultsThe 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 ConclusionsBy 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.