Trust and mistrust in shaping adaptation and de-implementation in the context of changing screening guidelines

Abstract

Objective: To understand barriers and facilitators to the adaptation of programs reflecting changing scientific guidelines for breast/cervical cancer screening, including factors influencing the de-implementation of messaging, program components, or screening practices no longer recommended due to new scientific evidence. Design and Methods: We conducted a convergent mixed-methods design in partnership with The National Witness Project (NWP), a nationally implemented evidence-based lay health advisor (LHA) program for breast/cervical cancer screening among African American (AA) women. Surveys were conducted among 201 project directors (PDs) and LHAs representing 14 NWP sites; in-depth interviews were conducted among 14 PDs to provide context to findings. Survey data and qualitative interviews were collected concurrently from January 2019-January 2020. Setting: National sample of NWP sites from across the United States. Results: Trust and mistrust were important themes that arose in quantitative and qualitative data. Common concerns about adapting to new guidelines included: 1) perceptions that new guidelines misalign with the personal values and beliefs of AA women; 2) mistrust of guidelines, providers, medical organizations; 3) confusion about inconsistent guidelines and concern they are based on studies that don’t reflect the experience of AA women (who experience more aggressive tumors at younger ages); and 4) belief that breast self-exam (BSE) is an empowerment tool for AA women and should be included to promote awareness, given many women discovered lumps/cancer through BSE. Conclusion: Findings highlight that trust and mistrust are important but understudied social determinants of health among AAs that should be considered in implementation science as they: 1) have critical implications for shaping health inequities; and 2) help explain and contextualize why new screening guidelines may not be fully embraced in the AA community.