Patients admitted to an ICU with a life-threatening illness experiences an almost complete disruption of their everyday life. During their ICU stay, patients experience extreme physiological and psychological stressors associated with their critical illness. These include delirium, fear, lack of privacy, noise, pain sedation administration, sleep deprivation and the abnormal ICU environment. These contribute to post-intensive care syndrome (PICS) which is used to describe the new or worsening impairments in physical, cognitive and psychological health status which may occur during their ICU stay and persist for months to years after discharge from the hospital. Families have been found to have similar issues. Incidence of PICS is variable but studies indicates that it occurs in 15% to more than 50% of ICU survivors. Studies have demonstrated key aspects of PICS including 10%-75% of patients have problems with activities of daily living one year later; 30%-80% of patients have cognitive impairment one year later; and 10%-50% have symptoms of depression. Furthermore, 25-60% of patients on mechanical ventilation for more than 4 to 7 days develop ICU-acquired weakness (ICUAW); 50%-75% of patients with sepsis develop ICUAW; and 85%-95% of these patients will still have abnormalities two to five years later. Ten to fifteen per-cent of patients will have significant symptoms of post-traumatic distress disorder (PTSD) that may still be present 10 years later. Patients state they have very few memories of the actual events during the time they were in the ICU. Many do not recall anything. Patients have described delusions, hallucinations, and nightmares. Investigators have shown there is a connection between memory disturbances and impaired quality of life after critical illness. Former ICU patients have expressed a need to know what they have been through.
Methods: This mixed method research study blended a post-test survey and qualitative entries from diaries. A diary project was implemented to provide an ongoing narrative, improve perceptions of care, and confidence in the healthcare team. An online Family Satisfaction Survey (FS-ICU) assessed levels of satisfaction with diary availability, helpfulness, improved confidence and decreased worry, and the overall impact of care to patients. Quantitative analysis was completed through the SCCM Collaborative Project. Transcribed data from the ICU diaries were normalized and reconfigured into the architecture used by Qualitative analysis was conducted by NVivo 10 and SPSS Text Analysis.
Results: FS-ICU survey results revealed participating families (n=5) liked the diaries (100%), found them helpful (100%), increased confidence in the healthcare team (60%), decreased worry about family member (80%), and impacted care of patient in the ICU (60%). Thirteen of 19 families (68%) submitted a diary. Patient Look was a very powerful theme, bilaterally and very strongly connected to both positive and negative sentiments. Other consistent themes were family crisis and family relations. Another theme was Family Crisis with family roles. There was a strong semantic network connection between Patient Look and Family Relations, as families describe their struggle with how the patient Looks.
Conclusion: Patient diaries provided clinically significant themes and invaluable insight into families’ perceptions of the ICU experience. The findings were disseminated to the unit staff and healthcare system, which impacted the healthcare team members provision of care. A limitation of this study was the small post-survey sample size. Replication of this project is recommended to contribute to the growing body of knowledge around the use of ICU diaries.
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