Communicating about Advanced Care Planning through Digital Storytelling: Perspectives from Persons Living with HIV/AIDS (PLWHA)

Research Team: Sadie Hutson, PhD, RN, WHNP, BC (PI); Joanne Hall, PhD, RN (Co-Investigator); Tami Wyatt, PhD, RN, CNE, ANEF, FAAN (Co-Investigator)

Summary of the Project:

The purpose of this project was to construct a composite digital story, collaborating with student actors in the theatre department who portrayed different narratives regarding advanced care planning needs/wishes of PLWHA. HIV/AIDS has evolved tremendously over the last three decades with the advancement of effective therapeutics; it is no longer a death sentence, but rather a chronic illness. Despite this, HIV/AIDS remains one of the leading causes of death among adults, particularly in the Southern United States. As a result, the emphasis on end-of-life (EOL)/ advanced care planning is essential for PLWHA. Very little is known about how Appalachian PLWHA communicate with others regarding their anticipation of EOL. Digital story telling refers to an expressive medium of digital media production consisting of first-person narrative, pictures, movies and music or sound effects to share ideas or aspects of a life story. It is a process enabling self-reflection and is potentially a powerful health promotion tool. We reasoned that digital story could be a useful communication tool for individuals to express: concrete wishes regarding their care at EOL, feelings toward friends, family, or others involved in their care, a legacy regarding their achievements, sentiments conveyed in the form of a memoir, as well as other meanings.

Over the course of about five weeks, the research team collaborated with student actors to construct four digital stories representing four different characters. Each actor was presented with a scenario based on data generated from previous research about the EOL needs of PLWHA. Each actor chose a scenario and subsequently researched and developed a character. From there, the actors wrote a narrative script which was eventually read aloud, recorded, and transformed into a digital media production incorporating music, pictures, and video to make a 3-5 minute movie (or digital story).

Next Steps:

The digital stories yielded from this project will eventually be used in an investigation exploring the use of digital storytelling as a complex, technological, innovative individualized intervention to improve communication about end-of-life issues among PLWHA. They will be shown to patients to give them a foundation for understanding digital storytelling. This project will also allow us to seek extramural funding for an intervention study, and test the feasibility of digital storytelling construction among patients. Furthermore, we hope to use these digital stories as a way for individuals, including healthcare professionals, to better understand the creative process as well as the possibilities of personal use of this communication modality to enhance advanced care planning.

The stories can be found at here.