Purpose: Community-based participatory research methods were utilized to culturally tailor an educational cancer clinical trials DVD for Black women. The DVD, “Clinical Trials: Are they right for you?” provides answers to common questions and discusses concerns about cancer clinical trials. Focus groups with Black women were conducted to obtain knowledge, attitudes, and perceptions about the cultural relevance of the words, people and stories of DVD. Learner verification techniques were employed to identify participant's viewpoints on the appearance, self-efficacy enhancement, acceptability, and persuasiveness of the educational DVD. A community advisory panel (CAP) was used to review results and develop recommendations for future media products.
Methods: The study took place in two phases. In the first phase, four focus groups (n=32) were held with Black women without a personal cancer diagnosis in the area of Hillsborough, Pasco and Pinellas counties. The focus groups questions were based on learner verification techniques which assessed the user-friendliness, perceived intention, and visual attractiveness of the educational DVD. The duration of the focus groups was 90 minutes. All focus groups were audio taped and transcribed verbatim. Thematic coding, using a crystallized-immersion framework was conducted by the research team. A combination of hand-coding and Atlas TI software were employed using the learner verification content as a priori codes. The frequency and nature of the emergent themes were compared across the groups with concentration on potential differences between participants who had prior experience as a caregiver and those who had not. In the second phase, de-indentified focus group findings were presented to the CAP to obtain recommendations for improvement of the cancer clinical trials DVD and future educational efforts aimed at the Black community.
Results: Preliminary findings from the focus groups included differences between caregiver and non-caregiver with prior caregiver participants providing more detailed recommendations due to exposure to some cancer clinical trials educational materials and personal experience with events and/or instructions received while caring for a loved one. Both groups felt the representation of Black women should be increased on the DVD. Findings from both the focus groups and the recommendations from the study's CAP will be utilized to develop more culturally relevant educational materials in regard to cancer clinical trials in the future. Additionally, future research will continue collaborations with the CAP to ensure that educational materials are centered on the concerns of the community as to readily engage the Black community.
In light of low rates of participation among Black women in cancer clinical trials, working collaboratively with the Black community to ascertain their perspectives on cancer clinical trials is integral to developing culturally relevant educational materials that may improve understanding of clinical trials and lead to informed decision making.
Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A29.