Intensive care unit (ICU) diaries and the experiences of patients’ families: a grounded theory approach in a lower middle-income country (LMIC)

Abstract

Objective: 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. Method: 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. Results: 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. Conclusions: 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.