Hirshberg Eliotte L, Butler Jorie, Francis Morgan, Davis Francis A, Lee Doriena, Tavake-Pasi Fahina, Napia Edwin, Villalta Jeanette, Mukundente Valentine, Coulter Heather, Stark Louisa, Beesley Sarah J, Orme James F, Brown Samuel M, Hopkins Ramona O
Center for Humanizing Critical Care, Internountain Medical Center, Murray, Utah, USA
Department of Medicine, Division of Pulmonary and Critical Care, Intermountain Healthcare, Murray, Utah, USA.
BMJ Open. 2020 Apr 6;10(4):e035213. doi: 10.1136/bmjopen-2019-035213.
To investigate: (1) patient and family experiences with healthcare and the intensive care unit (ICU); (2) experiences during their critical illness; (3) communication and decision making during critical illness; (4) feelings about the ICU experience; (5) impact of the critical illness on their lives; and (6) concerns about their future after the ICU.
Four semistructured focus group interviews with former ICU patients and family members.
Multicultural community group and local hospitals containing medical/surgical ICUs.
Patients and family who experienced a critical illness within the previous 10 years.
None.
Four separate focus groups each lasting a maximum of 150 min and consisting of a total of 21 participants were held. Focus groups were conducted using a semistructured script including six topics relating to the experience of critical illness that facilitated deduction and the sorting of data by thematic analysis into five predominant themes. The five main themes that emerged from the data were: (1) personalised stories of the critical illness; (2) communication and shared decision making, (3) adjustment to life after critical illness, (4) trust towards clinical team and relevance of cultural beliefs and (5) end-of-life decision making. Across themes, we observed a misalignment between the medical system and patient and family values and priorities.
The experience of critical illness of a diverse group of patients and families can remain vivid for years after ICU discharge. The identified themes reflect the strength of memory of such pivotal experiences and the importance of a narrative around those experiences. Clinicians need to be aware of the lasting effects of critical illness has on patients and families.
调查：（1）患者及其家属在医疗保健和重症监护病房（ICU）的经历；（2）他们在危重病期间的经历；（3）危重病期间的沟通与决策；（4）对ICU经历的感受；（5）危重病对其生活的影响；以及（6）对离开ICU后未来的担忧。
对曾入住ICU的患者及其家属进行四次半结构化焦点小组访谈。
多元文化社区团体和设有医疗/外科ICU的当地医院。
在过去10年内经历过危重病的患者及其家属。
无。
共举行了四个独立的焦点小组，每个小组最长持续150分钟，共有21名参与者。焦点小组访谈采用半结构化脚本，包括与危重病经历相关的六个主题，便于通过主题分析进行数据归纳和分类，形成五个主要主题。数据中出现的五个主要主题是：（1）危重病的个性化故事；（2）沟通与共同决策；（3）危重病后生活的调整；（4）对临床团队的信任以及文化信仰的相关性；（5）临终决策。在各个主题中，我们观察到医疗系统与患者及家属的价值观和优先事项之间存在不一致。
不同患者群体及其家属在ICU出院后的数年内，对危重病经历的记忆仍可能栩栩如生。所确定的主题反映了这些关键经历记忆的强度以及围绕这些经历的叙述的重要性。临床医生需要意识到危重病对患者及其家属的持久影响。
