Rawlings Deb, Miller-Lewis Lauren, Tieman Jennifer
Palliative Care, College of Nursing and Health Sciences, Flinders University, Adelaide SA 5000, Australia.
Behav Sci (Basel). 2018 Nov 30;8(12):111. doi: 10.3390/bs8120111.
Few previous studies have formally examined people's wishes regarding what they want to do before they die. This study aimed to describe responses to an activity within a Massive Open Online Course (MOOC) where people considered what was important when faced with their own mortality. We asked participants to complete the following: "Before I Die, I want to…". The content of participants' responses ( = 633) was analysed qualitatively with a coding schema developed and then applied. All authors independently coded the first 100 "Before I Die" statements, followed by a second round of coding where themes were verified and confirmed. Following this, two independent raters coded all 633 responses, obtaining 95.24% agreement (Cohen's Kappa = 0.789, < 0.0005). Twelve themes emerged from the data: family; do an activity; personal aspiration; live life fully, happiness; love; the greater good; peace; legacy; gratitude; religion; and health. Responses could also be distinguished as being inward-facing (about the self), and outward-facing (about others). Reflecting on what is important and on what a person wishes to achieve or address before they die can be seen as a companion process to advance care planning which addresses what an individual wants to plan to manage their actual death.
以往很少有研究正式调查人们对于死前想做之事的意愿。本研究旨在描述大规模在线开放课程（MOOC）中一项活动的反馈情况，在该活动中人们思考面对自身死亡时什么是重要的。我们要求参与者完成以下内容：“在我死前，我想……”。对参与者的回答内容（n = 633）采用自行制定并应用的编码方案进行定性分析。所有作者独立对前100条“在我死前”的陈述进行编码，随后进行第二轮编码以验证和确认主题。在此之后，两名独立评分者对所有633条回答进行编码，一致性达到95.24%（科恩kappa系数 = 0.789，p < 0.0005）。数据中出现了12个主题：家庭；进行一项活动；个人抱负；充分生活、幸福；爱；更大的利益；安宁；遗产；感恩；宗教；以及健康。回答也可分为关注自身内在（关于自我）和关注他人外在（关于他人）两类。思考死前重要之事以及个人希望实现或处理之事，可被视为推进照护计划的一个伴随过程，照护计划关注的是个人希望如何规划应对自己的实际死亡。
