Filling the gaps: A mixed-methods study exploring the use of patient diaries in the critical care unit

BACKGROUND:Survivors of critical illness often take time to recovery physically and psychologically from their critical care experience. There is tentative evidence suggesting that the use of a patient or family led diary with entries by nurses, doctors and allied health professionals may help the patient 'fill in the gaps' by making sense of a time they have forgotten. Many have confused or frightening memories and a diary can aid patients and their families in the recovery after critical illness. AIMS:A mixed methods study including a qualitative exploration of the impact of diaries on critical care patients in order to describe the long-term effects of patient diaries. METHODS:A two phase study including a prospective diary intervention and evaluation and subsequent in-depth interviews, using the principles of Grounded Theory. The instruments, Post Traumatic Stress Score-14 (PTSS-14) and EuroQol (EQ-5D-3L), were used to measured post-traumatic stress symptoms and quality of life in the year after diary. A questionnaire about diary use was completed by participants and content analysis of the diary was also undertaken, alongside basic demographics to explore patient characteristics. FINDINGS:For the 50 patients receiving the diary intervention, those completing a diary evaluation, 95% found them helpful and 90% found it helped fill memory gaps. Mean scores for PTSS-14 (cumulative) at four months and 12 months: 30.5 (SD=10.8) and 25.7 (SD=11.7). Mean EuroQol visual analogue scores at four months and 12 months were 77.8 (SD=14.3) and 71.8 (SD=18.5) respectively. Themes from subsequent interviews with eight patients included: providing holistic care, emotional support and empathy and dealing with loss of control. Data confirmed that whilst diaries had broad value in making sense of the critical care experience and their subsequent recovery, not all were able to read them again. Integrated analysis of four data sources suggested the core themes of the diary revealed its value as: a dynamic communication tool integral to holistic care and person-centredness; a reflection of the impact of a critical care event and a resource that helped give a sense of meaning to what had happened. CONCLUSION:Diaries can offer a means of providing clarity for patients who struggle to come to terms with their critical care experience and subsequent recovery, but should be given to patients with forethought and support. It remains unclear which types of patients might benefit most from diaries.