Tripathy Swagata, Acharya Swati Priyadarshini, Sahoo Alok Kumar, Mitra Jayanta Kumar, Goel Kishen, Ahmad Suma Rabab, Hansdah Upendra
Anesthesia & Intensive Care, AIIMS, Bhubaneswar, Odisha, India.
Clinical Psychiatry, AIIMS, Bhubaneswar, Odisha, India.
J Patient Rep Outcomes. 2020 Jul 23;4(1):63. doi: 10.1186/s41687-020-00229-2.
An intensive care unit (ICU) diary is a relatively new concept in low middle-income countries (LMICs). Illiteracy and socio-cultural inhibitions may affect the use and utility of this intervention, which has proven beneficial to patients and their families in high income countries (HICs). We aimed to explore how families of ICU patients experienced ICU diaries in our set up by using the Grounded Theory (GT) approach. A relatively new research tool, this enables exploration of a phenomenon to build theories in areas hitherto uncharted.
A clinical psychologist did 29 in-depth interviews of relatives of 13 patients admitted in the ICU for > 24 h for whom an ICU diary was being maintained. We used a three-step coding process- open, axial, and selective coding, followed by the formulation of a theory embedded in the data.
We found that the younger relatives of ICU patients accepted the idea better (age 30, SD 6) Half (48%) had education between 5th to 10th standards. Emergent themes suggested that for the family members, reading and writing the diary brought novelty, acted as a communication enabler, spiritual truss, and improved knowledge leading to change in perspective about the health care system. It also became a bridge to community bonding after patient discharge. Starting with appreciating the novelty of 'diary entries,' which was a new and exciting concept, family members used the diaries to communicate with health care workers (to gain information and understanding about the disease and treatment) and the patient to express their love and to maintain a connection. The diary acted as a confessional for hopes, fears, guilt, and faith for many members. As a tool, it enabled them to understand medical personnel as human beings and to appreciate their efforts, effectively improving confidence in the system. Finally, upon returning home, the diary was a crowd puller for extended family and neighbors encouraging discussions and enhancing bonding and information sharing.
Our findings indicate a good acceptance of ICU diaries by family members in our ICU. With less literate, admitted 'shy 'members, in a society where 'diary writing' is not culturally rampant, the appreciation for the novel concept was universal. We see a place for these interventions not only at the patient/ family level but also as a means to 'correct' the image of health care workers in our society by humanizing ourselves to the end-user- the patient and his family.
重症监护病房（ICU）日记在低收入和中等收入国家（LMICs）是一个相对较新的概念。文盲和社会文化限制可能会影响这种干预措施的使用和效用，而在高收入国家（HICs），这种干预措施已被证明对患者及其家属有益。我们旨在通过扎根理论（GT）方法探讨在我们的机构中，ICU患者家属对ICU日记的体验。这是一种相对较新的研究工具，能够在迄今未知的领域探索一种现象以构建理论。
一位临床心理学家对13名入住ICU超过24小时且正在使用ICU日记的患者的亲属进行了29次深入访谈。我们采用了三步编码过程——开放编码、轴心编码和选择性编码，随后形成了一个基于数据的理论。
我们发现，ICU患者中较年轻的亲属对这一理念接受度更高（年龄30岁，标准差6）。一半（48%）的人接受过五年级到十年级的教育。浮现出的主题表明，对于家庭成员来说，阅读和撰写日记带来了新鲜感，成为了沟通的促进者、精神支柱，提高了认知，从而改变了对医疗保健系统的看法。在患者出院后，它还成为了社区联系的桥梁。从欣赏“日记条目”的新鲜感（这是一个新颖且令人兴奋的概念）开始，家庭成员利用日记与医护人员交流（获取有关疾病和治疗的信息与理解），并向患者表达他们的爱并保持联系。日记成为了许多成员倾诉希望、恐惧、内疚和信念的途径。作为一种工具，它使他们能够将医护人员视为普通人并理解他们的努力，有效地增强了对医疗系统的信心。最后，回到家后，日记吸引了大家庭成员和邻居，促进了讨论，加强了联系和信息共享。
我们的研究结果表明，我们ICU中的家庭成员对ICU日记接受度良好。在一个“写日记”文化并不盛行、有文化程度较低且“腼腆”的成员的社会中，对这一新颖概念的欣赏是普遍存在的。我们认为这些干预措施不仅在患者/家庭层面有作用，而且作为一种手段，可以通过使我们自己人性化，即面向最终用户——患者及其家属，来“纠正”我们社会中医护人员的形象。
