Critical Care Diaries: a qualitative study exploring the experiences and perspectives of patients, family members and nurses
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This thesis describes a qualitative study exploring the use of critical care diaries from the experiences and perspectives of patients, family members and nurses in a Scottish Intensive Care Unit (ICU). Diaries are currently used in some ICUs across Europe, the UK, Australia and other countries to help patients come to terms with the experience of critical illness. Started in the ICU, the diary is written at the bedside by nurses and family members providing an account of what happened when the patient was in ICU. Following discharge, the diary is handed over to the patient for them to read and refer to during their recovery. Therefore, the diary is used by different people, at different times and in different ways throughout the critical illness journey. However, until recently, research has mainly focused on the diary being read by the patient after ICU as an aid to recovery with little known about family members and nurses despite them being the main authors during the time in ICU. This doctoral research was designed to explore critical care diaries from multiple perspectives and experiences to gain a greater understanding of the different ways in which diaries can be used. Furthermore, it is the first known research study in this area to have been undertaken in NHS Scotland where the use of diaries remains a relatively new practice. The theoretical perspective of Symbolic Interactionism helped to inform the development and design of the research study. A focused ethnographic approach was taken to explore the use of critical care diaries from the different groups identified, during and after a stay in ICU. The setting was an Adult ICU in Scotland where diaries were being used as part of a follow up service for patients and family members after ICU. Data were collected from February 2013 to June 2014. Semi-structured interviews were the main method of data collection. A purposive sampling strategy was adopted to recruit participants in triads with a related patient, family member and nurse involved in their care during the time in ICU. This is a novel and unique approach to research in this area. Four complete triads and two incomplete triads were recruited giving a total of sixteen interviews with four patients, six family members and six nurses. Interviews were supplemented with a small number of formal observations of nurses carrying out diary related activities (n=9) and field notes from time spent at the site. Transcribed interview data were analysed using a thematic approach, uncovering five main themes: (1) Information; (2) Communication; (3) Emotion; (4) Person Centered and (5) Gender. The concept of ‘Stories as joint actions’ developed by the sociologist Ken Plummer in 1995 was used as a framework to discuss and explain the findings. Diaries were found to support information sharing and facilitate communication interactions between nurses, family members and patients in the ICU as well as promoting and demonstrating a person centered approach to care. Emotional support was experienced by family members from writing in and reading the diary during the time in ICU whereas patients experienced emotional support from reading diary entries after the time in ICU. However emotional effort was associated with reading and writing in the diary during and after the time in ICU for patients, family members and nurses. Male family members were found to be less likely to write in the diary compared to female family members. Factors such as gender and literacy appeared to influence diary use however this requires further investigation. A new conceptual model ‘Critical Care Diaries as Joint Actions’ was created to address the complex nature of experiences with critical care diaries. Exploring the use of diaries from multiple perspectives and experiences has provided valuable insight into the different ways in which diaries are used during and after the time in ICU demonstrating that although the diary is primarily written for the patient, family members, nurses and patients use the diary in different ways to support their needs and others needs throughout the experience of critical illness.