Newsletter June 2023

Newsletter June 2023:
Dear friends of the ICU diary
We hope that you are all doing well! In this ICU Diary Newsletter, we have summarized for you some studies on diaries and tested ChatGPT!
Enjoy reading!
Teresa, Kristin, and Peter


Writing Diaries for patients with poor prognosis
Writing diaries seems to be very easy, when the patients recover and make good progress. But it might be challending, when patient deteriorate and have a poor progrnosis. Högvall et al (2023) from Norway aimed to explore the experiences of nurses who write diaries for intensive care patients with a poor prognosis. The qualitative study involved 23 nurses from three hospitals with an established diary writing practice. The nurses participated in focus groups, and reflexive thematic analysis was used to analyze the data. The findings revealed an overarching theme of "Finding the right words." Nurses faced the challenge of writing in light of the uncertainty surrounding the patient's survival and the unknown reader of the diary. Striking the right tone was crucial considering these uncertainties. When it became clear that the patient's life could not be saved, the purpose of the diary shifted towards providing comfort to the family. Writing a special and meaningful diary entry when the patient was dying was considered an important activity for the nurses. Some of nurses’ quotes were:
“It's a bit difficult because you always write to the patient, but then if things don't go well, then eventually it can be hard to find the words, especially if there's a withdrawal of treatment. Because then you actually write more to the family, or the bereaved.... Then it can be difficult to find the right words, I mean (...) who's going to read this after all?”
“I see it [diary writing] as a benefit for all patients, because there's something about the way we view our patients, and we talk a lot about the need to be aware of who the person in the bed is, not just a ‘case’. I believe writing the diaries has helped us achieve that.”
“Yes, ... I wrote ‘you look peaceful’ and ‘I can see your face is relaxed’, somehow to show those left behind that the patient didn't suffer.”
“It's kind of a process for us too, at least if it's a tough situation or really sad. Then I think it might help me a bit as well.”
“And then we sum it up in the end, after the passing, by writing a kind of epilogue in the diary, in some sense we send our greetings to the family, you see... and thank them for our time together here ...”
The study concluded that diaries could serve purposes beyond helping patients understand their illness trajectory. In cases where the prognosis was poor, nurses adapted their writing to provide comfort to the family rather than focusing on informing the patient. Writing diaries was a meaningful practice for the nurses, particularly in managing the care of dying patients. Overall, the study highlights the complex considerations and emotional aspects involved in writing diaries for critically ill patients with a poor prognosis, emphasizing the importance of providing comfort and support to both the patient and their family during this challenging time.
Högvall LM, Egerod I, Herling SF, Rustøen T, Berntzen H.
Finding the right words: A focus group investigation of nurses' experiences of writing diaries for intensive care patients with a poor prognosis. Aust Crit Care. 2023 Mar 16:S1036-7314(23)00029-2. doi: 10.1016/j.aucc.2023.02.002

Feasibility and acceptance of ICU diaries adapted to pediatric patients.
The letter includes a description of a pilot study conducted in a pediatric ICU to assess the feasibility and acceptance of ICU diaries as a tool against post-intensive care syndrome (PICS). PICS refers to the development of post-traumatic stress symptoms, anxiety, and depression in caregivers of ICU patients. The study involved providing ICU diaries to 24 families of pediatric patients, with entries mainly written by parents and healthcare professionals. The median age of the children was 1.3 months (0.26-15 months). Entries were mainly written by parents 114/182 entries) and staff (57/182). After discharge, families were asked to complete a satisfaction questionnaire. Fourteen out of the 24 participants provided responses, indicating that all families had read the diary, with most of them reading it between 5 and 10 times. The diary was rated at 3.7 points (on a scale from 1 to 4) for its usefulness in involving the family in patient care. Thirteen out of the 14 respondents stated that the diary helped them discuss the PICU experience with other family members. Some of the parents’ quotes were:
“It is a beautiful way to remember everything I experienced with my daughter clearly, and at the time I was writing it helped to relieve stress a bit”
“Today, my older children can read the diary and have an idea of what was going on with their newborn sister.”
“It helps clear your mind as you write about the experience. Later you have good memories of the days you spent there, so traumatic but so necessary.”
The study suggests that ICU diaries tailored for pediatric patients are well received by families and may help prevent and cope with PICS by improving intrafamily communication. However, further research is needed to evaluate the impact of ICU diaries on PICS incidence.
López-Fernández E, Oviedo-Melgares L, Ordoñez-Sáez O, Belda-Hofheinz S, Ramos-Casado MV.
Feasibility and acceptance of ICU diaries adapted to paediatric patients. A new tool against family post-intensive care syndrome? An Pediatr (Engl Ed). 2023 Apr;98(4):308-310

Conzeptualization of PICU Diaries
Tabea Wilmeroth, who performed the following study, wrote this summary for the newsletter. We are very grateful, Tabea, and congratulate you to this wonderful publication!
Objective: The birth of a premature or critically ill newborn can result in a traumatic event for the entire family. Intensive care diaries have proven to be a valuable tool to help family members cope with their experiences. Nevertheless, there is no theoretical concept for the use of intensive care diaries in neonatology. Therefore, the aim of this study was to investigate (1) how nurses use the intensive care diary in clinical practice and (2) in which way the diary supports family members in coping with their experiences. On basis of these data and taking into account current literature a framework for conceptualizing diaries in the neonatal intensive care unit (NICU) should be developed, too.
Method: Using a qualitative research design, 12 individual interviews with nurses and two group interviews with 9 parents were conducted and analyzed.
Results: Unlike ICU diaries, the usage of NICU diaries is very variable. In nursing practice, depending on the involvement of nurses in diary writing, there are three different variations: (a) nurses write the diary for the whole NICU stay of the child and parents can participate, (b) parents can decide whether or not nurses should participate in diary writing after their initiation, or (c) nurses initiate the diary and hand it over to parents, who are then responsible for the diary writing.  Sometimes nurses introduce the diary as a memory tool and sometimes as a coping tool for parents. Whether the diary is read by nurses varies and has turned out as a very sensitive topic. In regard to the second question it showed that  the diary supports the parental coping process by (1) strengthening parental role identification, (2) explaining events in the NICU and classifying their meaning and (3) being a colorful counterpoint to the technical environment of the NICU.
Diary conceptualization focused on the aspects of diary writing and reading, as well as communication by nurses and parents regarding the diary usage. There is relevant literature which can lead to a reflexive and theory-based usage of the diary in the NICU. Nurses can use it to infer what content may be helpful to parents and what they should consider when reading parental diary entries. For parents, the concept offers clarity about the function of the diary.
Conclusion: NICU diaries are a flexible tool to support parents coping with their child's prematurity and/or critical illness during its NICU stay. Embedded in a theoretical concept, the aim of diary usage can be highlighted and create clarity for all involved.
Thank you very much, Tabea, and congratulations to this wonderful study!
Willmeroth T.
Nurses' and Parents' View on Neonatal Intensive Care Unit Diaries: A Qualitative Study and Framework Conceptualization. Am J Perinatol. 2023 May 19. doi: 10.1055/s-0043-1768959

ICU Diaries and Quality of Life
The use of ICU diaries is beneficial for surviving ICU patients in terms of PTSD, but the effect of diaries on quality of life (QoL) is not well explored. Hu et al. (2023) performed a systematic review and meta-analysis that aimed to evaluate the impact of ICU diaries on the quality of life (QoL) of ICU survivors and their relatives. The researchers conducted a comprehensive search of various online databases and assessed the methodological quality of the included studies using established tools. The review identified 7 studies of moderate quality including 761 patients; 5 studies used SF-36, 2 used QLSBC. The results indicated that ICU diaries had a positive effect on the QoL of ICU survivors, with a standardized mean difference (SMD) of 0.79 (95%CI 0.24 to 1.34). The effect size was given, but very low. In relatives, no significant benefits could be shown. In conclusion, this meta-analysis suggests that the use of ICU diaries can improve the QoL of ICU survivors. However, there was no evidence of a beneficial effect on the QoL of relatives. The researchers note that the evidence synthesized in the study is limited and subject to bias, indicating the need for further research to validate these findings.
Hu D, Ji X, Li Y, Liang Y, Chen J.
Effect of intensive care unit diary on quality of life of intensive care unit survivors and their relatives: A systematic review and meta-analysis. Nurs Open. 2023 May 31. doi: 10.1002/nop2.1819

Follow-up interventions
There is a growing interest in outpatient ICU follow-up care and their impact on participant recruitment and retention. A systematic review of 47 studies involving 5,998 participants revealed that hospital-based interventions were the most commonly reported model. However, interventions without in-person attendance showed higher rates of recruitment, intervention delivery, and participant retention. The most frequently reported model of care was in-person hospital-based interventions, followed by hybrid interventions combining in-hospital and remote components. Few studies focused on interventions without hospital attendance, such as telehealth and diaries. The rates of recruitment, intervention delivery, and retention varied across different models of care. Hospital-based interventions had median recruitment rates of 51.5% (ranging from 24% to 94%), intervention delivery rates of 61.9% (ranging from 8% to 100%), and retention rates of 52% (ranging from 8.1% to 82%). In contrast, interventions without hospital attendance had higher rates: recruitment rates of 82.6% (ranging from 60% to 100%), intervention delivery rates of 68.5% (ranging from 59% to 89%), and retention rates of 75% (ranging from 54% to 100%). Factors facilitating engagement included the perceived value of follow-up, continuity of care, intervention accessibility and flexibility, and well-designed follow-up programs. The study suggests the need to consider alternative approaches to outpatient ICU follow-up care to optimize patient engagement and improve outcomes.
Dimopoulos S, Leggett NE, Deane AM, Haines KJ, Abdelhamid YA.
Models of intensive care unit follow-up care and feasibility of intervention delivery: A systematic review. Aust Crit Care. 2023 May 30:S1036-7314(23)00060-7

This is no summary of a study, but a test by us. Artifical intelligence is discussed, and first concepts for patient-centered, AI developed relaxing interventions are
published. Is it feasible to ask ChatGPT for writing a diary entry for an ICU patient? We made a test with ChatGPT, here is the result:

QUESTION: Good morning, ChatGPT. Please write a short entry for an ICU Diary of Mr. Smith, who is on an Intensive Care Unit by accident, on mechanically ventilation, has delirium, and slept well during the last night
Date: [Current Date]
Dear Mr. Smith,
I wanted to provide you with a brief update on your progress in the ICU.
You had a restful night's sleep, despite being on mechanical ventilation. The medical team ensured your comfort with appropriate sedation.
We continue to address the delirium you've been experiencing. The medical staff is employing strategies to alleviate your confusion and disorientation, such as reorientation and maintaining a calm environment.
The healthcare professionals in the ICU are dedicated to meeting your needs and closely monitoring your progress. Your family's regular visits provide love and encouragement, which are crucial to your healing process.
Your resilience is remarkable, Mr. Smith. The medical team remains hopeful for brighter days ahead and is here to support you on your journey to recovery.
Wishing you strength and progress.
With hope,
[Your Name]
End of answer.
Well this is surprising, and not. AI and Chatbots are programmed for this purposes, and the answer by ChatGPT reads fluid and appropriate at first glance. Well, writing the question took 30 seconds, the answer took less than 5 seconds; at all, much shorter than a real entry, written by a nurse. One can use copy and paste into a digital diary, and continue working. Using ChatGPT might be time- and workload saving. The entry reads personal, but has no specific details about special events, interaction, or communication with Mr. Smith. But this might be feasible with more information and training, e.g. a few keywords in the question. It might be feasible to train the AI for focusing on patients’ communication signs (you opened your eyes when I talked to you), integrating reflective questions (I wonder what you were dreaming of?), or messages from the family (you children sang a birthday song for you). AI might consider these aspects and be very close to real entries. Is this a feasible, valuable, meaningful option for us? First, it is not written by humans. It would be a lie to sign the entry with the own name. Hence, it might be questionable if patients and families would accept AI-written diaries (we suppose not). Second, the diary is not written for and to patients, and might has not the therapeutic effect as real diaries. Third, it does not compare with our ethics to simulate a personal approach; Forth, the difference between single diary writing persons is missing, the team approach; likely, entries by ChatGPT will read all very similar., Fifth, it is only feasible to copy and paste in digital diaries; and patients and families still prefer hand-written diaries.
There might be more arguments for and against the use of using AI in ICU diaries, and the discussion is just beginning. We must be aware of the developments, temptations, and limitations, and discuss them transparently.

Implementation of family integration in nursing activities - perspectives of patients, relatives, and staff of intensive care units.
Despite numerous publications, the implementation of family integration in intensive care units is still very heterogeneous. This also applies to the integration of relatives in the care of the patient. In an integrative review, Dijkstra and colleagues (2023) collected the perspectives of patients, relatives, and staff regarding the integration of relatives into care, which makes the publication particularly valuable for practice. Relatives express specific needs related to integration: they would like to be helpful for the patient, but this does not mean, that all relatives want to be involved in care. Relatives feel unsure if they are causing extra work for the staff or if they are allowed to touch the patient. Being involved in care helps many relatives feel better and enables a sense of control. The aspects of family integration, which are partly perceived as positive by the relatives, are sometimes reviewed critically by the staff, since family integration also has an effect on the organization of their work and leads, for example, to being less able to control work processes themselves. With regard to concrete participation in specific care activities, the study clearly shows that no activity can be recommended for all situations and persons. Rather, preferences must be discussed individually with the relatives. The study provides an excellent overview of examples of areas in which relatives can be integrated into care.
Dijkstra BM, Felten-Barentsz KM, van der Valk MJM, Pelgrim T, van der Hoeven HG, Schoonhoven L, Ebben RHA, Vloet LCM.
Family participation in essential care activities: Needs, perceptions, preferences, and capacities of intensive care unit patients, relatives, and healthcare providers-An integrative review. Aust Crit Care. 2023 May;36(3):401-419. doi: 10.1016/j.aucc.2022.02.003. 

Family integration - wishes of patients and relatives
In another study, the wishes of patients and their relatives were further explored regarding integration of families. Bohart et al (2023) asked former patients who received intensive care and their relatives about their wishes regarding family integration. Three themes emerged that were particularly important to the former relatives, but also to the former patients. 1) Being in a constant dialogue with the treatment team; 2) Humanization of the entire situation. It is particularly important to relatives that the patient is seen as a person and that activities are supported that express this (e.g. through individualized care); 3) Strengthening the relatives' ability to be at the bedside for the patient during treatment. This includes, for example, the possibility for relatives to be present, but also information and recommendations on how relatives can deal with the patient. The qualitative work thus confirms important approaches of family centered care. It must be said that the data were collected during the pandemic and therefore restrictions applied in the intensive care units, which could have had an effect on the feedback from relatives and patients.
Bohart S, Lamprecht C, Andreasen AS, Waldau T, Møller AM, Thomsen T.
Perspectives and wishes for patient and family centred care as expressed by adult intensive care survivors and family-members: A qualitative interview study. Intensive Crit Care Nurs. 2023 Apr;75:103346. doi: 10.1016/j.iccn.2022.103346

Missing a study?
We can't read and summarize every study. If we missed an important study, please email us a brief summary and reference, and we'll be happy to include it in the newsletter!

Stay heathy and best wishes!
Teresa, Kristin & Peter

Dr. Teresa Deffner, Dipl.-Rehapsych. (FH), Psychologist in Intensive Care Medicine, University Hospital Jena, Germany
Kristin Gabriel, Media economist, art historian, and yoga teacher, Berlin
Dr. Peter Nydahl, RN BScN MScN, Nursing Research, University Hospital of Schleswig-Holstein, Germany

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