Abstract
Background:
Intensive care unit (ICU) diaries are recommended to address psychological sequelae following critical illness. Diaries are correlated with reduced prevalence of post- traumatic stress disorder in survivors of critical illness and their families.
Local Problem:
Our ICU was not adequately meeting the psychological needs of patients and families.
Methods:
We established an interprofessional team to implement an ICU diary program in partnership with implementation of the ABCDEF (Assess, prevent, and manage pain; Both awakening and breathing trials; Choice of analgesia and sedation; Delirium: assess, prevent, and manage; Early mobility and exercise; Family engagement and empowerment) bundle and peer support programs. Staff knowledge and perception of ICU diaries were obtained.
Interventions:
Diaries were initiated for patients at high risk for post-intensive care syndrome, and entries by all ICU disciplines and family members/visitors were encouraged.
Results:
A total of 75 diaries were initiated between January 2017 and January 2019. The ICU diaries have been received positively by patients, family members, and staff.
Conclusions:
The ICU diary is a cost-effective and efficient intervention to help patients and family members cope with the burden of critical illness.
Keywords: Clinical Nurse Leader, Critical Illness, Diary, Intensive Care Unit, Post-Intensive Care Unit
Critically ill patients and their families are often exposed to stressful situations in the intensive care unit (ICU), which can lead to a set of impairments called Post-Intensive Care Syndrome (PICS) and PICS-Family (PICS-F). Commonly experienced by both ICU survivors and family members, PICS and PICS-F can include psychological (eg, depression, anxiety), cognitive (eg, memory problems, executive dysfunction), and physical (eg, weakness) impairments that can last several years.1,2 While in the ICU, patients and family members describe feeling completely vulnerable and helpless.3 The manner in which hospital staff communicate with patients and family members can help them make sense of what is happening in the ICU and affect long-term psychological outcomes.4
To support families, guidelines recommend the use of structured interventions and approaches, such as open visitation, family participation in patient care, peer support groups, and ICU diaries.5 Utilization of ICU diaries has been described by families as therapeutic, and associated with enhanced coping and communication with ICU staff.6–8 ICU diaries can aid in patient memory recollection and provide an opportunity to understand or fill in the gaps from an ICU stay, especially episodes of impaired consciousness.8 Patients also report increased communication and feeling closer to family members as a benefit of ICU diaries.7
LOCAL PROBLEM
During a gap analysis, it was apparent we had opportunities to improve how we engaged and empowered patients’ families. The aim of this project was to implement an ICU diary program as a means to engage and empower family members to mitigate PICS and PICS-F. We felt ICU diaries could also provide a platform for improved family member communications and coping when a loved one is critically ill. The challenge of ICU diary implementation lies in overcoming barriers (eg, risk aversion, time constraints), thus these factors were carefully considered when planning implementation.
METHODS
Context
Implementation was conducted in a Veterans Affairs Medical Center (VAMC) in the Southeast United States that serves the Veteran population in Middle Tennessee and parts of Kentucky. The campus is a level 1 teaching facility with 20 ICU beds and 6 progressive care beds between the medical and surgical ICUs. In 2015, we began participation in the Society of Critical Care Medicine (SCCM) ICU Liberation ABCDEF Bundle Implementation Collaborative, a national quality improvement project focused on implementation of the ABCDEF bundle (Assess, prevent, and manage pain; Both awakening and breathing trials; Choice of analgesia and sedation; Delirium: assess, prevent, and manage; Early mobility and exercise; Family engagement and empowerment). In October 2016, we began participation in the SCCM THRIVE Peer Support Collaborative, an international effort to implement peer support programs to improve patient and caregiver experiences following critical illness. Both ICU Liberation and THRIVE Peer Support implementation provided an ideal context for ICU diary implementation as they emphasize family engagement and empowerment and had good support by unit personnel. This project was reviewed by the Institutional Review Board, and it was determined that this work was quality improvement and not subject to ethics approval.
Intervention
A multidisciplinary team (social work, clinical nurse leader [CNL], pastoral care, ICU leadership, nurse researcher, key nurses from day and night shifts) was formed to construct a detailed plan to implement an ICU diary program in the medical ICU. An orientation open house for ICU and non-ICU providers and hospital leadership was hosted in October 2016, and the first ICU diary was initiated in January 2017.
Diary content
ICU diary processes and formats vary across settings, with most having the overall goal of providing a chronological record of a patient’s ICU stay written in simple everyday language including a background into why the patient is there, and ongoing entries describing daily events and progress (eg, Supplemental Digital Content 1, ICU Diary Process).9 Use of photographs in the diaries is variable due to ethical and privacy concerns.10 Our multidisciplinary team determined a chronological record was indicated with inclusion of polaroid photographs when special signed consent was obtained. Sample diary entries were created to guide clinicians (eg, Supplemental Digital Content 2, ICU Diary Guidelines). We encouraged diary entries to include messages of hope, empathy, and prayer (when appropriate). The diary is not considered part of the medical record.
Diary contributors and frequency
Staff time was considered when determining ICU diary contributors and frequency. The literature indicates daily entries may be made by nursing staff, physicians, family and/or visitors.8,11–13 On consideration of these factors, it was decided to encourage daily diary entries by all ICU staff, clinicians, family members, and visitors at nurse and family discretion.
ICU diary implementation – participants and consent
Diaries tend not to be used for patients who are confused or have dementia, as they are not able to provide appropriate consent.8,11 Though other studies excluded these populations, we included patients who were acutely confused (eg, delirium) or had baseline dementia. A diary can offer clarity for delirious patients when confusion resolves and provide an outlet for emotional expression for family members of dementia patients. We particularly targeted patients at high risk for developing PICS (ie, anticipated intubation >48 hours, pharmacologically sedated, CAM-ICU positive).
We created a diary acceptance form to be completed by a next of kin, in the event the patient was cognitively impaired, or by the patient when they are cognitively able to complete the form. The purpose of the acceptance form was to acknowledge understanding of healthcare provider diary entries and agreement for the patient or family member to keep the diary once completed. Nurses were able to initiate diaries without an acceptance form, when necessary, to capture chronological events from the time of ICU admission. Rationale for the low number of diaries initiated during the 2-year quality improvement (QI) period include dependence on the CNL to initiate most ICU diaries and multiple occasions of low acuity census.
ICU diary implementation – process development
The ICU CNL and nurse researcher communicated with ICUs in the United States and Europe to learn their processes for ICU diary implementation. Review of the literature informed potential barriers to ICU diary implementation (Supplemental Digital Content 3, Figure). The CNL and nurse researcher synthesized this information and developed guidelines (eg, frequently asked questions, sample entries), a process flowchart, tracking log, patient door signs, and pre-/postimplementation survey to evaluate knowledge and perceptions of the ICU diary. The materials were subsequently reviewed and approved by the multidisciplinary implementation team. A location for all ICU diary supplies was designated within the ICU.
ICU diary implementation – training
Due to simultaneous implementation of several new programs in the ICUs (eg, ABCDEF bundle, peer support groups), it was determined that a large-scale, in-person training program was not feasible. Instead, twice weekly, small ICU huddles were held with staff and diary champions (ie, experts on diary resources and processes trained to facilitate implementation) to review diary benefits, guidelines, processes, and expectations. Further coaching was accomplished via 1:1 interaction with nurses and providers caring for patients with an active ICU diary. A primary focus of both training mechanisms was to address the perceived concern of the ICU diary being used in legal proceedings and re-iterating there are no reports of ICU diary use in legal proceedings. These informal conversations allowed for individualized training through elicitation of staff perceptions of ICU diary barriers and challenges and addressing specific questions.
Measures
ICU diary uptake was measured using per-diary-day proportion of entries by a nurse, ICU physician, or other ancillary provider (eg, chaplain, social worker, respiratory therapist, physical therapist, pharmacist). Family member/visitor diary entries were also measured as proportion of entries per-diary-day. Lastly, a 10-item survey was developed to assess multidisciplinary ICU staff knowledge and perceptions of ICU diaries before and after implementation. Items 1–6 used a 100-point visual analog scale, with higher numbers being more positive. The final 4 survey questions invited qualitative responses. The voluntary, anonymous surveys were distributed electronically by the CNL one month prior to and 6 months following ICU diary implementation.
Analysis
Descriptive statistical summaries were used to report proportions of staff and family/visitor compliance with daily ICU diary entries, and pre-/postimplementation multidisciplinary survey responses. Statistical summaries and graphics were developed using Microsoft Excel (Microsoft Corporation, Redmond, WA). Qualitative feedback from survey participants were evaluated using content analysis for barriers and facilitators to ICU diary implementation and use. Verbatim comments and descriptive summaries are provided.
RESULTS
From January 2017 to January 2019, 75 ICU diaries were initiated. The first 6 months of daily compliance tracking indicates nurse compliance with a once daily diary entry on 93% of ICU diary days, and non-nurse provider (any 1 provider) compliance with a once daily diary entry on 22% of ICU diary days. Family/visitor participants wrote an entry on 32% of ICU diary days. The before and after survey response rate was 50% (n=20, 19 nurses, 1 physician) and 58% (n=27, 17 nurses, 9 physicians, 1 unknown), respectively (Table). There was a 111% increase in mean ICU diary knowledge and 91% increase in comfort educating family on ICU diary use from pre- to postimplementation. Likewise, there was an increase in respondent belief that ICU diaries are beneficial. Perceptions that diaries were a burden to workflow and could have legal ramifications also increased (10% increase for both).
Table.
ICU Diary Pre-/Post-Implementation Staff Survey Results
| 1. Rate your current knowledge of the ICU diary. | 26 (9, 70) | 80 (60, 100) |
| 2. Do you think an ICU diary is beneficial for patients and families? | 64 (49, 90) | 80 (60, 100) |
| 3. Do you think an ICU diary is a burden on your work schedule? | 51 (33, 70) | 40 (40, 99) |
| 4. Do you have concerns on the legal ramifications of keeping a diary? | 53 (29, 96) | 60 (20, 100) |
| 5. Do you have the resources necessary to implement and educate the patient and/or family on the diary? | 44 (30, 65) | 80 (60, 100) |
| 6. Do you feel comfortable educating the family on using an ICU diary? | 49 (16, 66) | 80 (60, 100) |
Open-ended survey responses
ICU diary barriers
At the completion of the pilot, barriers to diary implementation described by the multidisciplinary team include staff and physician buy-in, staff and physician participation in entry-making, legal concerns, comfort in writing entries, and interruption of workflow/time concerns. Regarding comfort, some team members felt comfortable only when they knew the patient and how the family would react to their diary entries.
“Overall, I love the concept of the diaries, and when I bond with my patient usually after 2 nights of having them, I feel like I can write something meaningful and encouraging. It’s those frustrating and difficult nights where I struggle. Some people have a sense of humor. Some people are very sensitive and know the family or patient very well, it’s hard to gauge how the entry may come across. The last thing I want to do is upset someone with a tool that is supposed to help with grieving or coping. This is where I struggle.”
Perceived legal ramifications made team members cautious about writing in the diaries: “The legal ramifications for me if I write in the diary and we get taken to court for something. The diary is something that could be brought into court.” Dairies are a multidisciplinary team effort, and if part of the team does not buy-in, then diaries become difficult to implement. One provider commented: “I think that the biggest barrier for implementing and using the diary is staff buy-in. I find it frustrating that some staff members choose not to participate.” Team members perceived time was a constraint to implementation, and diary writing varied depending on the busyness of the day: “On busy days, there is often no time available to journal. However, on the slower days, I enjoy writing in them.”
ICU diary benefits
Staff reported benefits are increased family engagement, enhanced communication, greater sense of caring, a coping mechanism for patients and families, and giving Veterans a frame of reference for their hospitalization. ICU diaries can be helpful for the family in addition to the patient, involving them with the care team.
“I think the ICU diaries have been very successful thus far. I have seen the positive impacts they have had on patients and have definitely seen the positive impacts they have had on families. When this project was initiated, I was aware of the evidence supporting diary for the sake of patients, but I did not anticipate the exceptionally positive benefits the diaries have had on families.”
Diary entries can enhance communication aiding in the patient care process, “communicating and tracking key progress in care and reassessing goals of care.” The content in the diaries can help patients and family understand the trauma of an ICU admission: “The biggest benefit of using the diary is the benefit to the patient and the patient’s family. Patients experience trauma and confusion while in the ICU, and I think that the diaries can be a very therapeutic and helpful tool for both the patients and the families.” Another provider explained that a diary “helps tremendously after the ICU experience to make sense of things, especially if the patient was on sedation and/or delirious.” If a patient expires in the ICU, diaries can serve as a tool for family members to cope: “My experience with the diary unfortunately has been with patients that have passed away. I think it helps the family cope and grieve.”
ICU diary influence on unit culture
Many staff immediately bought into the idea of an ICU diary. The multidisciplinary team felt it was a chance to share clinical progress with the Veteran and frame ICU care in a more human to human encounter versus medical dialogue. Non-nursing staff (eg, chaplain, social work) were using the diary to get a glimpse of how the Veteran was doing, reading entries such as, “You did good today, we tried some breathing on your own,” and finding that even the more difficult days were framed in an encouraging way. Team members would write about family visits, personal things they learned about the patient, and rituals (eg, prayer) they would do. Often, entries trended toward the encouraging (eg, “you have many people with you that are trying to help and encourage you”). Patients returning to visit the ICU have reported an appreciation of the positive and encouraging tone of the diary and its helpfulness in the healing process.
DISCUSSION
This is the first VA to implement ICU diaries, successfully implementing 75 diaries between January 2017 to January 2019. The ICU diary is a reasonable and cost-effective intervention to alleviate PICS in the Veteran population. Both VA staff and family members made entries into the diary. However, family participation was low compared to nurse participation. Family participation in diary writing may be challenging if family members cannot locate the diary (eg, stored outside of patient room), not regularly encouraged by bedside nurses to make entries, or they do not fully understand the process or value of writing in diaries. Finally, non-nurse staff had minimal participation, likely due to the lower number of patient-provider interactions and larger patient caseload compared to nurses. These are important considerations for the development of future implementation strategies to enhance participation by health care providers and family members.
Diaries were initiated for most qualifying patients during the study period; however, goals of compliance with making entries did not meet benchmarks set by the CNL. Compliance goals were not met by nurses on days when they were intensely busy, or the ICU diary project leader (CNL) was not present (eg, weekends, nights) to remind and/or provide coaching to make entries for complex cases. Integrating diaries into the work day is reportedly difficult when considering other nurse responsibilities and can easily be forgotten.14 In most cases, the first diary entry (circumstances leading up to and including ICU admission) takes significantly longer to write (about 10–15 minutes) than subsequent daily entries (about 3–5 minutes) because there is more information to include.15 However, diary entries can take longer to write when nurses are unclear on what is appropriate to record in a diary or challenged to find the proper way to express a patient’s ICU course.16,17 Accessible diary examples and available coaches across multiple shifts/days can ameliorate time barriers to implementation and allow for more frequent diary interaction thus building nurse writing skills and confidence.
Nurse ambivalence to ICU diaries was an additional barrier to our implementation as some nurses had not fully “bought-in” to the new process. The strongest reason for ambivalence was the perceived threat of legal ramifications. The CNL had individualized discussions with nurses about the ICU diary role in improving nurse/patient/family communication and diary potential to limit a patient’s psychological challenges (eg, depression) after hospital discharge.16–18 Most importantly, the CNL clarified that there is no documentation in the literature of an ICU diary being used in legal proceedings or resulted in legal ramifications for the nurse. The CNL also emphasized the ICU diary is not part of the medical record. The CNL incorporated ICU diary discussion and reminders into multidisciplinary team rounds. This process helped to establish a culture of team advocacy and produced positive peer referents for the ICU diary effort.
An ICU survivor’s perspective
Ralph Gervasio, a Vietnam Veteran and ICU survivor, shared his perspective of the ICU diary:
“Because I was intubated/ventilated for nearly 3 weeks in ICU, at which time I was sedated, I was not aware that an ICU diary was being maintained for me and my attending family members. How gratifying it was for me later to know that my doctors, nurses, therapists, chaplain, and social worker went beyond the necessities of their jobs to engage with my family and me personally through the diary. God guided the hands of all these professionals, and I survived. Along with my goody bag of discharge items for home was a copy-book style ICU diary with my name on it. I did not immediately open the diary until maybe 2 weeks after returning home. I guess I had anxiety of what could be in it. When I did start reading it, I was immediately moved by how the entries showed great compassion, encouragement, and progress. This initial reading, followed with discussions with my wife and son about the entries, led to my reunion with ICU staff, my participation with the peer support ICU recovery program (diary in hand), my personal recovery, and ultimately my continued participation in helping other family members understand what their loved one may be experiencing. I stayed with the peer support group for two-and-a-half years so I could give back by helping others. I believe that my personalized ICU diary, which I occasionally opened for insights years later, offered the gateway for my expanded understanding of my ICU experience and greatly quickened my cognitive and emotional recovery.”
Limitations
This implementation project occurred in one Veterans Affairs hospital. Implementation in other contexts may require different processes, procedures, and approvals. Nonetheless, our processes and methods are available for adaptation to other contexts. We did not evaluate whether our implementation of ICU diaries influenced outcomes associated with PICS and PICS-F. However, research evaluating the influence of ICU diary use on patient and family member psychological outcomes (eg, anxiety, depression, post-traumatic stress disorder) is indicated. Our sample size was relatively small, and future studies should include more participants. We did not evaluate patient, family member, or visitor perceptions of ICU diaries or barriers and facilitators making ICU diary entries. We initiated a human factors study of patient and family member ICU diary participation in 2019 and are currently analyzing the findings. Finally, the same CNL facilitated the program since inception. Compliance in implementation wavered on days she was not present in the unit (eg, weekends, holidays). It is unclear how CNL turnover would influence long-term sustainment of this program.
CONCLUSION
We have developed a cost-effective, feasible, and sustainable process for ICU diary implementation. To support the spread of this intervention to other VAMC facilities, we have worked with the Veterans Health Administration National Office of Patient-Centered Care to create an implementation toolkit that is available for national access. Multidisciplinary participation in entry-making provided a more holistic picture of the care patients received. ICU diary implementation offered staff a place to reflect and feel more connected with patients and families. ICU diaries also provided an avenue for families to express themselves when they are feeling frightened and helpless. Ultimately, ICU diary implementation added significant value to the ICU experience by humanizing care. Further research is warranted to guide improvements to the design of ICU diary tools, processes, and contexts to facilitate maximally effective implementation. Exploring which factors constrain and facilitate ICU diary use by patients and families, and how these factors might impact outcomes, may be useful to inform the ICU diary intervention.
Supplementary Material
Disclosures:
LMB is currently receiving grant funding from NHLBI (#K12HL137943-01). The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. The contents of this paper are solely the responsibility of the authors and do not necessarily represent those of the National Institutes of Health, the Department of Veterans Affairs or Vanderbilt University.
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