Hutson Sadie P, Hankins Lauren R
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.
J Hosp Palliat Nurs. 2019 Apr;21(2):131-138. doi: 10.1097/NJH.0000000000000503.
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.
由于患者对家人和医疗服务提供者缺乏信任、与艾滋病毒相关的污名、对精神信仰问题的误解、社会孤立以及其他因素,在感染人类免疫缺陷病毒(HIV)/获得性免疫缺陷综合征(AIDS)的人群中,进行高级护理计划(ACP)和临终讨论尤其困难。先前的研究表明,感染艾滋病毒/艾滋病的人中参与高级护理计划的相对较少,但开发对文化敏感的高级护理计划方法势在必行。数字故事讲述就是这样一种方法,它是一种视频叙事,可以用来分享生活故事的想法或方面。本研究的目的是探讨医疗服务提供者以及感染艾滋病毒/艾滋病的人对于将数字故事讲述用于高级护理计划的可接受性、益处、技术挑战和障碍的看法。采用定性描述性设计,对阿巴拉契亚中南部的21名参与者进行焦点小组访谈。使用定性内容分析法对转录数据进行分析。研究结果揭示了患者和医疗服务提供者关于高级护理计划的想法、与数字故事可接受性相关的因素、对感染艾滋病毒/艾滋病者的污名以及对以数字故事形式呈现的高级护理计划合法性的担忧。未来的研究应聚焦于创建数字故事的过程,将其作为一种干预措施,以改善这一独特人群的高级护理计划。