Language of the Heart: Creating Digital Stories and Found Poetry to Understand Patients’ Experiences Living with Advanced Cancer

Abstract

In this article, we share our findings on patients’ experiences creating digital stories about living with advanced cancer, represented through found poetry. Over a period of 12 months, patients from the program “Managing Cancer and Living Meaningfully” (CALM) completed digital stories about their experiences living with cancer. Digital stories are short, personalized videos that combine photographs, imagery, narration, and music to communicate a personal experience about a topic of inquiry. Patient interviews were conducted about the digital storytelling process. Found poetry guided the analysis technique. It is a form of arts-based research that involves using words and phrases found in interview transcripts to create poems that represent research themes. This article begins with a brief overview of the psychosocial intervention CALM, arts in healthcare, and found poetry, followed by the project background. The found poems represent themes of emotional impact, legacy making, and support and collaboration. Findings also indicate the inherently relational aspect of digital storytelling as participants emphasized the integral role of the digital storytelling facilitator. What follows is a discussion on digital storytelling, which considers the role of found poetry in representing patient voices in the research process.