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A Focus Group Study of Provider and Patient Perceptions of Communicating Advanced Care Planning Wishes Using Digital Storytelling

Hutson, Sadie P., PhD, RN, WHNP, BC; Hankins, Lauren R., BSN, RN

Journal of Hospice & Palliative Nursing: April 2019 - Volume 21 - Issue 2 - p 131–138
doi: 10.1097/NJH.0000000000000503
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Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story.

The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.

Sadie P. Hutson, PhD, RN, WHNP, BC, is assistant dean, graduate programs and associate professor, College of Nursing, University of Tennessee, Knoxville.

Lauren R. Hankins, BSN, RN, is PhD student, College of Nursing, University of Tennessee, Knoxville.

Address correspondence to Sadie P. Hutson, PhD, RN, WHNP, BC, 1200 Volunteer Blvd, Room 365, Knoxville, TN 37996 (shutson@utk.edu).

This study was approved via an expedited mechanism of the human subjects review committee at the University of Tennessee, Knoxville.

The authors have no conflicts of interest to disclose.

© 2019 by The Hospice and Palliative Nurses Association.