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

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 ten African American breast cancer survivors (mean age, 54; range 39-68 years), 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.

IMPLICATIONS FOR CANCER SURVIVORS

Breast cancer survivors can draw support and information from a variety of sources, including from other breast cancer survivors. We developed the survivor stories video program specifically for African American survivors to help improve their quality of life and adherence to follow-up care. Breast cancer survivors' experiences with treatment and living with cancer make them especially credible messengers of cancer information. Our novel, interactive technology is being tested in a randomized controlled trial and will be more broadly disseminated to reach a wider audience.