Patient diaries during and after hospitalization have been used to facilitate coping of both patients and family members. Patient diaries during hospitalization include comments and descriptions about the patient’s experience. Entries can be written by clinicians, patients, or family members/visitors.
We want to share an innovative twist on the use of diaries that we pilot tested in the ICU—a paper chain of messages posted in the patient’s room to provide a visual of the patient’s journey. The chain, visually displayed in the patient’s room, often prompts the question: What is this? Creating an opportunity for conversation.
Effectiveness of patient diaries
The use of patient diaries has been studied in the critical care setting. Here are three examples of what has been reported.
Jones, Bäckman, and Griffiths found that the use of diaries, written by hospital staff with the option for family members to contribute, reduced symptoms associated with posttraumatic stress syndrome at 3 months after ICU discharge in families in which the diary was provided compared to families who did not receive the diary.
Ewens, Chapman, Tulloch, and Hendricks studied the use of diaries after hospital discharge by critical care adult survivors. Survivors experience mixed emotions when reading the diaries, but still viewed them as a positive contribution to their recovery.
A Cochrane Systematic Review assessed the effect of critical care diaries on patients, and caregivers or families during hospitalization in critical care. Three studies met eligibility criteria of randomized controlled clinical trials. The authors concluded that there is minimal benefit or harm using patient diaries and future research is needed.
Telling a story
The goal of this project was to create a paper chain of single, written entries, similar to what would be written in a diary, to create a visual representation of the patient’s journey. The chain tells a chronological story of recovery, healing, and hope.
A paper chain is made up of links, connected to one another, often displayed during celebrations. In this pilot study, the paper chain was used to celebrate the trajectory of recovery and/or progress of patients in the neuroscience ICU who had traumatic brain injury (TBI). Participation of family members and staff in writing messages on the links had the potential to enhance engagement in the patient experience and patient care.
How it worked
Our pilot project received approval from the institutional review board. Family members of patients with TBI were given an information sheet and invited to participate; five agreed to do so.
We placed small bins of rectangle shaped pieces of construction paper and colored markers in the patient’s room for the family’s use. All team members, family members, and visitors were invited to write a note capturing an event on any particular day. For example, 1/1/18 Oxygen lower, 1/4/18 Breathing tube removed, 1/5/18 First sip of water, 1/7/18 First steps out of bed. The family could start to put the chain together in the ICU or at a later time, after transfer to acute care or hospital discharge.
Below is an example of a chain.
Family members were contacted via text messaging after discharge from the ICU at various intervals, 1 and 3 months to explore continuation and use of the chain. Unfortunately, only a few family members responded after discharge to give feedback on the impact of the chain. This was possibly due to time constraints and continued adjustments for the family during the recovery journey. Most family members acknowledged not keeping up with the chain. Originally we wanted to find out what families did with the chain over time, such as draping it over a mantle, window frame, or Christmas tree, but due to the lack of initial follow up responses we did not pursue gathering this information.
Overall, staff and families enjoyed participating in building the chain about patients’ journey in neuro-critical care. This project offered families an opportunity to share in patients’ progress and recovery. Since families do not continue the chain after discharge from the hospital it may be an activity limited to acute hospitalization. Nurses from other patient care areas are interested in implementing this project, which is creative, colorful, and engaging. In some ways, it brings the art to the science of our practice.
Susan Fowler, PhD, RN, CNRN, FAHA
Suzanne Ashworth, MSN, APRN, CCRN, CCNS
Susan Fowler is a nurse scientist at Orlando Health, Orlando, Florida. Cara Santos is a staff nurse in the neuroscience ICU at Orlando Regional Medical Center (ORMC) in Orlando, Florida. Suzanne Ashworth is a clinical nurse specialist for the neurosciences at ORMC.
Ewens B, Chapman R, Tulloch A, Hendricks JM. ICU survivors’ utilisation of diaries post discharge: A qualitative descriptive study. Aust Crit Care. 2014; 27(1):28-35.
Jones C, Bäckman C, Griffiths RD. Intensive care diaries and relatives’ symptoms of posttraumatic stress disorder after critical illness: A pilot study. Am J Crit Care. 2012;21(3):172-176.
Ullman AJ, Aitken LM, Rattray J, et al. Intensive care diaries to promote recovery for patients and families after critical illness: A Cochrane Systematic Review. Int J Nurs Stud. 2015;52(7):1243–1253.