Reaching Hard to Reach Populations with Hard to Communicate Messages: Efficacy of a Breast Health Research Champion Training Program

Abstract

A Breast Health Research Champion training program was developed targeting self-identified community breast health advocates from a predominantly African American community with a significant breast cancer mortality disparity. Twelve individuals completed the program that provided training in breast cancer risk and screening, breast cancer research, biospecimen in cancer research, and human research subject protection. The training emphasized four key messages to be disseminated to the community. Trainees hosted a minimum of two social chats with individuals from their social networks, and functioned as community researchers, acquiring consent and gathering follow-up data from attendees. Trainees reached 199 individuals from their social networks, and chats were diverse in the venue selected, mode of message transmission, and the audience reached. Post/pre questionnaire data from attendees at the chats showed significant improvement in knowledge, attitudes and intended behaviors as it relates to breast cancer screening, clinical research and biospecimen in research. Forty percent of attendees provided 4 week follow-up information. Of respondents eligible for mammography, 38% had taken action to be screened, and 86% of respondents had spoken about the information to someone else in their social network. Trainees expressed feelings of empowerment after completing the project, “feeling like the expert,” and all trainees were surprised at the enthusiastic response from attendees of their chats. Trainees continued to disseminate the information learned from the training program during the six months following the training, reaching an additional 786 individuals in the community.

Peer support opportunities across the cancer care continuum: a systematic scoping review of recent peer-reviewed literature

“…Only four articles [57-60] reported how peer supporters were impacted by their involvement in a PS program. Methodological issues, such as insufficient sample size of peer supporters or a general lack of focus on the impact of participation on those in the PS role could explain this gap.…”

“…For peer supporters going through or recovering from their own health issues, the demands of their position may worsen or create new health problems [62]. Of the four studies that did examine the impact on peer supporters, self-growth and giving back were the most common impacts reported [57-60]. Findings from non-cancer related PS programs have shown improvements in confidence, self-esteem, and mental health among peer supporters [63].…”

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

“…The fourth was an Irish paper on undertaking participatory learning and action approach in developing GP communication guidelines with migrants . The fifth was a US study on what worked in developing an educational programme on breast cancer screening amongst African American women . The sixth was an Australian study on how a randomized controlled trial developed an inclusive methodological approach co‐designed by people affected by severe mental illness .…”

“…The Kaiser study identified the importance of allocating funding to celebrate success with community partners . Including funding to cover the cost of involvement emerged as a mechanism in most of the literature . DFI stressed that this was key as often it was expected that they as an organization should cover these costs.…”

“…Community partners were often enabling research at the 11th hour and spending a lot of time ensuring the project was culturally appropriate and accessible (Appendix S6). Researchers were often working beyond the scope of their funding calls to provide support to their partners and spending significant time in being present with community partners to build relationships and trust . The review notes structural challenges that need to be navigated such as ethics, payments and access to university resources for community partners and sustainable funding to enable participation .…”