title: Educating low-SES and LEP survivors about breast cancer research: pilot test of the Health Research Engagement Intervention.
abstract: The Health Research Engagement Intervention (HREI) aims to reduce information and access disparities for breast cancer research opportunities among low-socioeconomic status (SES) and limited English proficient (LEP) breast cancer survivors by providing neutral, non-trial-specific information about health research via a trusted patient navigator. Qualitative methods in the context of a community-based participatory research design were used to iteratively design the HREI in collaboration with community-based care navigators from a trusted community organization, Shanti Project, and to locate appropriate research studies in collaboration with a web-based trial-matching service, BreastCancerTrials.org (BCT). Navigators were first trained in clinical trials and health research and then to deliver the HREI, providing feedback that was incorporated into both the HREI design and BCT's interface. Our intervention pilot with low SES and LEP survivors (n = 12) demonstrated interest in learning about "health research." All 12 participants opted to obtain more information when offered the opportunity. Post-intervention questionnaires showed that three of 11 (27 %) participants independently pursued additional information about research opportunities either online or by phone in the week following the intervention. Post-intervention navigator questionnaires indicated that navigators could confidently and efficiently deliver the intervention. LEP patients who pursued information independently faced language barriers. The HREI is a promising and potentially scalable intervention to increase access to neutral information about breast cancer research opportunities for low-SES and LEP individuals. However, in order for it to be effective, systems barriers to participation such as language accessibility at sources of health research information must be addressed.
authors.affiliation: Shanti Project, 730 Polk Street, San Francisco, CA, 94109, USA.
authors.forename: Alyssa
authors.initials: A
authors.lastname: Nickell
authors.forename: Nancy J
authors.initials: NJ
authors.lastname: Burke
authors.forename: Elly
authors.initials: E
authors.lastname: Cohen
authors.forename: Maria
authors.initials: M
authors.lastname: Caprio
authors.forename: Galen
authors.initials: G
authors.lastname: Joseph
mesh_terms: D035843:Biomedical Research; D001943:Breast Neoplasms / Q000517:prevention & control*; D003144:Communication Barriers; D055812:Community-Based Participatory Research; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D010353:Patient Education as Topic; D062526:Patient Navigation; D010865:Pilot Projects; D012923:Social Class; D011795:Surveys and Questionnaires; D017741:Survivors / Q000706:statistics & numerical data
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