The RESPCCT Study: Community-led Development of a Person-Centered Instrument to Measure Health Equity in Perinatal Services

While Canadian maternal mortality rates suggest widespread access to high-quality care, perinatal health care outcomes and care experiences among pregnant people in Canada vary widely, particularly among communities that have been historically oppressed, excluded, and marginalized. The lack of patient-oriented research and measurement in perinatal services led to the RESPCCT (Research Examining the Stories of Pregnancy and Childbirth in Canada Today) Study which used a community participatory action research (CPAR) approach to examine experiences of pregnancy and childbirth care. In this paper, we describe co-creation of a person-centered survey instrument that measures respect, disrespect and mistreatment during pregnancy-related care of individuals with diverse identities, backgrounds and circumstances. The study was co-led by a Community Steering Council alongside a multi-disciplinary group of researchers and clinicians, and pilot tested by service users from across Canada. The final survey instrument includes items that assess respectful care across 17 domains, including validated measures of autonomy, respect, mistreatment, trauma, and discrimination. It also captures information about respondents’ identities, backgrounds, circumstances, access to care, provider type, and outcomes. A total of 6096 individuals participated in the survey. We describe how we implemented CPAR best practices, strengths, challenges, and lessons learned for instrument development in reproductive justice research.