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.Ethn Dis. 2021;31(1):119- 132; doi:10.18865/ed.31.1.119