数字故事能否开拓缓和医疗研究的新天地？一项描述性定性研究，旨在探索一种新兴的公共卫生研究方法在本土缓和医疗背景下的应用。
Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context.
机构信息
School of Nursing, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand.
Media and Communication, School of Social Sciences, Faculty of the Arts, University of Auckland, Auckland, New Zealand.
出版信息
BMC Palliat Care. 2017 Sep 4;16(1):46. doi: 10.1186/s12904-017-0216-x.
BACKGROUND
The World Health Organization (WHO) has called for global approaches to palliative care development. Yet it is questionable whether one-size-fits-all solutions can accommodate international disparities in palliative care need. More flexible research methods are called for in order to understand diverse priorities at local levels. This is especially imperative for Indigenous populations and other groups underrepresented in the palliative care evidence-base. Digital storytelling (DST) offers the potential to be one such method. Digital stories are short first-person videos that tell a story of great significance to the creator. The method has already found a place within public health research and has been described as a useful, emergent method for community-based participatory research.
METHODS
The aim of this study was to explore Māori participants' views on DST's usefulness, from an Indigenous perspective, as a research method within the discipline of palliative care. The digital storytelling method was adapted to include Māori cultural protocols. Data capturing participant experience of the study were collected using participant observation and anonymous questionnaires. Eight participants, seven women and one man, took part. Field notes and questionnaire data were analysed using critical thematic analysis.
RESULTS
Two main themes were identified during analyses: 1) issues that facilitated digital storytelling's usefulness as a research method for Māori reporting on end of life caregiving; and 2) issues that hindered this process. All subthemes identified: recruitment, the pōwhiri process, (Māori formal welcome of visitors) and technology, related to both main themes and are presented in this way.
CONCLUSION
Digital storytelling is an emerging method useful for exploring Indigenous palliative care issues. In line with a Health Promoting Palliative Care approach that centres research in communities, it helps meet the need for diverse approaches to involve underrepresented groups.
背景
世界卫生组织（WHO）呼吁采取全球方法来发展姑息治疗。然而，一刀切的解决方案是否能够适应姑息治疗需求方面的国际差异，这是值得怀疑的。需要更灵活的研究方法，以便了解地方一级的不同优先事项。对于在姑息治疗证据基础中代表性不足的土著居民和其他群体来说，这一点尤为必要。数字故事讲述（DST）有可能成为这样的一种方法。数字故事是简短的第一人称视频，讲述了对创作者具有重要意义的故事。该方法已经在公共卫生研究中找到了一席之地，并被描述为社区参与式研究中的一种有用的新兴方法。
方法
本研究的目的是从土著观点探讨毛利参与者对 DST 作为姑息治疗学科内研究方法的有用性的看法。数字故事讲述方法经过改编，包括毛利文化协议。使用参与者观察和匿名问卷收集了捕捉参与者对研究体验的数据。有八位参与者，七名女性和一名男性参加了研究。使用批判性主题分析对现场记录和问卷数据进行了分析。
结果
分析过程中确定了两个主要主题：1）有助于 DST 作为毛利人报告临终关怀的研究方法的有用性的问题；2）阻碍这一过程的问题。确定的所有子主题：招募、普瓦希仪式（毛利人对来访者的正式欢迎）和技术，都与这两个主题有关，并以这种方式呈现。
结论
数字故事讲述是一种新兴的方法，可用于探索土著姑息治疗问题。符合以社区为中心的促进健康的姑息治疗方法，它有助于满足不同方法的需求，以涉及代表性不足的群体。
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