Carter Drew, Moodie Stewart, Reddi Benjamin, Yeo Nikki, Laver Heylen, Sundararajan Krishnaswamy
School of Public Health, Adelaide Health Technology Assessment, The University of Adelaide, Mail Drop DX650 545, Adelaide, 5005, Australia.
DonateLife SA, Adelaide, Australia.
BMC Health Serv Res. 2024 Dec 18;24(1):1617. doi: 10.1186/s12913-024-11877-1.
Since 2018, DonateLife South Australia and the Royal Adelaide Hospital (RAH) have collaborated to deliver routine family follow-up after bereavement in the intensive care unit (ICU). This follow-up includes a telephone interview that invites bereaved family members to comment on the quality of care and communication experienced in the ICU. To identify bereaved families' experiences, including how they conceptualise good care and communication in intensive care, an analysis was conducted on all qualitative data collected during 118 interviews completed between 1 February 2018 and 30 May 2019. Reflexive thematic analysis was undertaken in an inductive and semantic way, with coding and theme generation being directed by the explicit content of the data, as conceptualised by Braun and Clarke. Initial codes were based on the interview questions, then additional codes were created during data analysis. Coding was informed by philosophical insights about concepts and the spirit of interpersonal engagement developed by Wittgenstein and Cordner, respectively. A concept map of the relationships observed between patterns of meaning in the data was created. Participants deeply appreciated staff providing them and their loved one with practical expressions of care and hospitality, however modest. These, along with staff sometimes crossing professional boundaries, expressed staff's spirit of engagement, which in turn helped to maintain the patient's dignity. Private space also helped to maintain the patient's dignity, and it helped family to have enough time to say goodbye. Family not feeling rushed and being informed about their loved one dying also helped family to have enough time to say goodbye. Being informed depended on the quality of doctors' communication. When family were not clearly informed, or had to wait long periods, they felt rushed and that they did not have enough time to say goodbye. Documents written to guide the assessment of intensive care comment on almost all of these matters, but the present study newly maps how they interact based on the extensive empirical evidence that it collected. Guidance documents should comment on giving staff scope to occasionally traverse a boundary, such as an institutional border or rule, to better support the patient and family, since families experience exceptionless practice insensitive to context as callous or disruptive of care.
自2018年以来，南澳大利亚捐赠生命组织与阿德莱德皇家医院（RAH）合作，在重症监护病房（ICU）为丧亲家庭提供常规的后续跟进服务。这种后续跟进包括一次电话访谈，邀请丧亲家庭成员对在ICU所体验到的护理质量和沟通情况发表意见。为了了解丧亲家庭的经历，包括他们如何理解重症监护中的优质护理和沟通，对2018年2月1日至2019年5月31日期间完成的118次访谈中收集的所有定性数据进行了分析。采用归纳和语义的方式进行反思性主题分析，编码和主题生成由数据的明确内容指导，这是根据布劳恩和克拉克的概念进行的。初始编码基于访谈问题，然后在数据分析过程中创建了额外的编码。编码分别受到维特根斯坦和科德纳关于概念的哲学见解以及人际互动精神的启发。创建了一个关于数据中意义模式之间观察到的关系的概念图。参与者非常感激工作人员为他们和他们所爱的人提供哪怕很细微的实际关怀和热情款待。这些，以及工作人员有时跨越专业界限的行为，都体现了工作人员的参与精神，这反过来有助于维护患者的尊严。私人空间也有助于维护患者的尊严，并且有助于家人有足够的时间道别。家人不感到匆忙以及被告知亲人的死亡情况也有助于家人有足够的时间道别。被告知情况取决于医生沟通的质量。当家人没有得到明确告知，或者不得不等待很长时间时，他们会感到匆忙，觉得自己没有足够的时间道别。用于指导重症监护评估的文件几乎对所有这些事项都有提及，但本研究根据其收集的大量实证证据，新绘制了它们之间的相互作用方式。指导文件应该提及给予工作人员偶尔跨越界限的空间，比如机构边界或规则，以便更好地支持患者和家属，因为家属会将对具体情况毫无变通的做法视为冷酷无情或破坏护理。
