A novel intervention using interactive technology and personal narratives to reduce cancer disparities: African American breast cancer survivor stories

Abstract

Purpose There has been a paucity of interventions developed for African American women to address persistent health disparities between African American and Caucasian breast cancer patients. We developed and piloted a technologically innovative, culturally targeted, cancer-communication intervention for African American breast cancer patients using African American breast cancer survivor stories. Methods We rated 917 clips from a video library of survivors’ stories for likability, clarity and length, and emotional impact (scaled responses) and categorized each clip by theme (Coping, Support and Relationships, Healthcare Experiences, Follow-up Care, Quality of Life, and Treatment Side Effects). We selected 207 clips told by 35 survivors (32–68 years old; 4–30 years after diagnosis), fitting one of 12 story topics, for inclusion in the interactive video program loaded onto a touch-screen computer. Videos can be searched by storyteller or story topics; stories with the strongest emotional impact were displayed first in the video program. Results We pilot tested the video program with 10 African American breast cancer survivors (mean age, 54; range 39–68), who, after training, watched videos and then evaluated the stories and video-program usability. Survivor stories were found to be “interesting and informative,” and usability was rated highly. Participants identified with storytellers (e.g., they “think a lot like me,” “have values like mine”) and agreed that the stories convinced them to receive recommended surveillance mammograms. Conclusions This novel, cancer-communication technology using survivor stories was very favorably evaluated by breast cancer survivors and is now being tested in a randomized controlled clinical trial.

Development and preliminary testing of PROGRESS: a Web-based education program for prostate cancer survivors transitioning from active treatment

“…This input supports the emerging literature on the importance of creating web-based cancer survivorship programs that address users' needs [32, 33, 49] specific to their diagnosis and treatment plan. Additionally, patient feedback on their desire to see patient-relevant images and visual representations of the material incorporated in to the website reinforces findings from the breast cancer survivorship literature [56] that it is important for patients to feel like they can relate to the content presented. For example, some of the original stock images of men and situations used in our website drafts elicited responses such as “they do not look like me” or “they look too happy.” Based on this feedback, the finished product was systematically modified to more accurately represent the diversity of prostate cancer survivors in terms of such factors as race/ethnicity, weight status, expression of mood, attractiveness, etc.…”

Perceived social support in African American breast cancer patients: Predictors and effects

“…The intervention arm received a novel, interactive, broadcast-quality video program designed to deliver clinically relevant cancer-related information to African American breast cancer patients (Pérez et al, 2014). The intervention, delivered three times over the first year of the study, aimed to increase patients' quality of life and adherence to follow-up care recommendations (see Online Supplement).…”

The Power of Digital Storytelling as a Culturally Relevant Health Promotion Tool

“…However, personal risk information in numeric form is not always well understood by people with low levels of education and/or low numeracy (Larkey & Gonzalez, 2007). In order to help make complicated messages easier to understand, the use of narratives in health communication, such as testimonials, soap operas, and cartoons, is increasingly being used as a strategy to educate and promote health behavior change (Hinyard & Kreuter, 2007; Pérez et al, 2014). …”