Integrating a narrative medicine telephone interview with online life review education for cancer patients: lessons learned and future directions

Abstract

We describe an online narrative and life review education program for cancer patients and the results of a small implementation test to inform future directions for further program development and full-scale evaluation research. The intervention combined three types of psycho-oncology narrative interventions that have been shown to help patients address emotional and existential issues: (1) a physician-led dignity-enhancing telephone interview to elicit the life narrative, (2) delivery of an edited life manuscript, and (3) self-directed life review education delivered via a Web site with instructional materials and expert consultation to help people revise and share their story. Eleven cancer patients tested the intervention and provided feedback in an in-depth exit interview. Although everyone said telling and receiving the edited story manuscript was helpful and meaningful, only people with high death salience and previous computer experience used the Web tools to enhance and share their story. Computer users prodded us to provide more sophisticated tools, and older (> 70 years) users needed more staff and family support. We conclude that combining a telephone expert-led interview with online life review education can extend access to integrative oncology services, is most feasible for computer-savvy patients with advanced cancer, and must use platforms that allow patients to upload files and invite their social network.

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CHESS: miStory personal homepage