Implementation of intensive care diary: perception of the family and the nursing team

Abstract

Objective

to identify the perception of family members and the nursing team regarding the implementation of an Intensive Care Unit diary into the routine care of critically ill patients.

Method

descriptive and qualitative study, carried out in an adult Intensive Care Unit (ICU), between July and October/2022. A diary was implemented, with records from family members and the nursing team. The family members' perception was identified through interviews, and the team's perception was identified through a conversation circle. Minayo thematic analysis was used. The study was approved by the Research Ethics Committee.

Results

nine family members participated; the following categories emerged: Benefits of using the ICU diary and Factors that may influence the use of the ICU diary. From the conversation circle, with five professionals from the nursing team, the categories were highlighted: Improved connection with patient and family; The diary as a source of information and ethical aspects related to records.

Final considerations and implications for practice

family members and nursing professionals considered the instrument beneficial, both for family members and patients. To support its implementation, well-established flows on use and family outreach are essential to support the process and obtain buy-in from the parties involved.

Keywords:
Critical Care; Diary; Nursing, Team; Family; Intensive Care Units

Resumo

Objetivo

identificar a percepção de familiares e da equipe de enfermagem sobre a implementação de um diário de Unidade de Terapia Intensiva à rotina de cuidados do paciente crítico.

Método

estudo descritivo, qualitativo, realizado em uma Unidade de Terapia Intensiva (UTI) adulto, entre julho e outubro de 2022. Implementou-se um diário, com registros de familiares e da equipe de enfermagem. A percepção dos familiares foi identificada através de entrevistas, e a da equipe, por meio de roda de conversa. Utilizou-se análise temática de Minayo. O estudo foi aprovado por Comitê de Ética em Pesquisa.

Resultados

participaram nove familiares; emergiram as seguintes categorias: Benefícios da utilização do diário de UTI e Fatores que podem influenciar no uso do diário de UTI”. A partir da roda de conversa, com cinco profissionais de enfermagem, evidenciaram-se as categorias: Melhora da conexão com paciente e família; O diário como fonte de informações e Aspectos éticos relacionados aos registros.

Considerações finais e implicações para a prática

os familiares e os profissionais de enfermagem consideraram o instrumento benéfico, tanto para familiares quanto para pacientes. Para sua implementação, fluxos bem estabelecidos sobre o uso e a aproximação da família são essenciais para subsidiar o processo e obter a adesão das partes envolvidas.

Palavras-chave:
Cuidados Críticos; Diário; Equipe de Enfermagem; Família; Unidades de Terapia Intensiva

Resumen

Objetivo

identificar la percepción de los familiares y del equipo de enfermería sobre la implementación del diario de Unidad de Cuidados Intensivos en el cuidado rutinario del paciente crítico.

Método

estudio descriptivo y cualitativo, realizado en una Unidad de Cuidados Intensivos (UCI) de adultos, entre julio y octubre de 2022. Se implementó un diario, con registros de los familiares y del equipo de enfermería. La percepción de los familiares fue identificada a través de entrevistas y la percepción del equipo a través de una rueda de conversación. Se utilizó el análisis temático de Minayo. El estudio fue aprobado por el Comité de Ética en Investigación.

Resultados

participaron nueve familiares; surgieron las siguientes categorías: Beneficios del uso del diario de UCI y Factores que pueden influir en el uso del diario de UCI. De la rueda de conversación, con cinco profesionales del equipo de enfermería, se destacaron las categorías: Mejora de la conexión con el paciente y la familia; El diario como fuente de información y Aspectos éticos relacionados con los registros.

Consideraciones finales e implicaciones para la práctica

los familiares y profesionales de enfermería consideraron beneficioso el instrumento, tanto para los familiares como para los pacientes. Para su implementación, son esenciales flujos bien establecidos sobre el uso y el alcance familiar para respaldar el proceso y obtener la aceptación de las partes involucradas.

Palabras clave:
Cuidados Críticos; Diario; Equipo de Enfermería; Familia; Unidades de Cuidado Intensivo

INTRODUCTION

The processes of care and critical care practices have evolved over the years, resulting in improved approaches and treatments for patients admitted to Intensive Care Units (ICUs) and better outcomes.¹ However, increased survival rates for these patients do not necessarily translate to a better quality of life after hospital discharge.² Compared to the general population, the long-term quality of life for patients who survive ICU admission is lower,³ due to the consequences and sequelae of critical illness, which involve physical, psychological, and cognitive impairments that may persist beyond the intensive care period.⁴

Post-Intensive Care Syndrome (PICS) refers to new or worsened multidimensional impairments in physical, psychological, cognitive, and social states, which can affect patients who have been admitted to the ICU due to critical illness, and is associated with high morbidity.⁵ Recently, it has been discovered that family members can also experience signs and symptoms related to the stress generated by their loved one's critical illness, known as Post-Intensive Care Syndrome-Family (PICS-F).⁶,⁷

Various interventions have been proposed for the prevention of PICS and PICS-F, with the ICU diary being one of them. This tool allows for daily entries in the form of a narrative, documenting the patient's journey in the ICU in the words of healthcare team members, the patient themselves (when able), and family members.⁸ This tool has proven to be useful in reducing anxiety and depression, as well as improving psychological outcomes and the quality of life for patients.⁹,¹⁰ The entries can help patients understand gaps regarding their ICU stay, retrieve memories, and improve coping mechanisms, as well as recognize the importance of family members during the critical illness.¹¹,¹² The diary has also been shown to be beneficial for family members by promoting engagement and involvement in the care process,¹³ and for professionals, as it facilitates closer connections with the patient and the humanization of care.¹⁴

Considering the importance of the ICU diary in addressing the psychological needs of patients and their families, and thus in preventing PICS and PICS-F, the following research question was formulated: “What are the perceptions of family members and the nursing team regarding the implementation of an ICU diary into the routine care of critically ill patients?”

Understanding how family members and the nursing team perceive the process of implementing this tool can provide valuable insights to increase adherence to the use of the diary, as well as to minimize gaps and shortcomings in its operationalization, given that there are few studies on the implementation of this intervention.

Thus, the objective of this study was to identify the perceptions of family members and the nursing team regarding the implementation of an ICU diary into the routine care of critically ill patients.

METHOD

Descriptive and qualitative study, elaborated and conducted according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.¹⁵ The study site was a level III (very high)¹⁶ ICU of a large public hospital in Porto Alegre, state of Rio Grande do Sul, Brazil. The unit has 59 beds, divided into four distinct physical areas, and accommodates both clinical and surgical patients, with a multidisciplinary team available. The study was conducted in one of these areas, comprising 15 beds.

As this involved the implementation of an ICU diary, the study sample included adult family members of adult patients who had been in the ICU for at least three days and were using mechanical ventilation at the time of diary implementation. Only family members of mechanically ventilated patients were included due to the expectation of longer hospital stays, which would allow for more entries and follow-up time. Only one family member per patient was included, either the person responsible for the patient's care or the closest family member willing to participate. Those unable to read or write, and/or with any cognitive deficits that would hinder diary completion, were excluded.

In addition to family members, the sample included nurses and nursing technicians who wrote in the diary and were available to participate in a focus group. No exclusion criteria were applied to the professional sample.

The diary was designed to be attractive and welcoming, with pages that allowed for the insertion of patient details, photographs, and drawings, to make the instrument individualized; the first page included information and instructions (Figure 1). Entries could be made by patients (when able), family members, and the multidisciplinary team. After ICU discharge or death, the patient and/or family member was allowed to keep the diary.

Figure 1
Cover and some pages of the ICU diary used in the study.

Initially, the researcher explained the diary and its use to the nursing teams across different shifts. The main researcher introduced the study to the family members of potentially eligible patients and invited them to participate during visitation. Upon consent, they were instructed on how to use the diary.

Data collection took place between July and October 2022. Patient variables (age, sex, and length of stay) were collected from medical records. Family members' data (age, sex, and relationship to the patient) and their perception of the diary implementation were collected through individual interviews conducted by the main researcher in a private room in the ICU (interview room). Interviews were scheduled based on the number of diary entries made by the family member and their availability. Although any family member could write in the diary, only the one included in the study was interviewed. A semi-structured interview guide was followed, containing the following open-ended questions: “How was your experience with the ICU diary?”; “What were your feelings and perceptions when writing and reading what others wrote in the diary?”; “Were the writings of the nursing staff important to you in any way?”; “Would you like more people to write in the diary? If so, which people?”; “Do you think there are benefits to using the diary?”; “What do you think of the diary's appearance?”.

Nursing staff data (age, sex, professional category, shift, and work experience) and their perceptions were collected through a focus group, lasting about one hour, conducted by the main researcher in the ICU meeting room. Professionals who made entries in the diary and were available for data collection participated. The thematic questions used included: “How was your experience using the ICU diary?”; “What were your feelings and perceptions when writing in the diary?”; “Do you think the diary can contribute in any way to the patient's recovery?” “Did you encounter any difficulties using the diary?”; “What did you think of the diary's appearance?”

Family members' material were included consecutively, and nursing professionals' material were included by convenience. The interviews and focus group were recorded and then fully transcribed by the main researcher. Analysis of both was conducted through thematic grouping, following the pre-analysis steps: organizing the material for analysis, initiating categorization after a quick reading; exploring the material with re-reading and, after coding, classifying data, and organizing them into categories; processing the data obtained and interpreting the results qualitatively.¹⁷ Data from family members and professionals were treated separately, as data collection occurred at different times.

The study was conducted in accordance with Resolution 466/2012 of the National Health Council¹⁸ and approved by the Ethics Committee of the proposing and co-participating institutions (CAAE 57349922.1.0000.5344 and 57349922.1.3001.5530). Family members and professionals who participated in the study signed the Free and Informed Consent Form.

RESULTS

Between July and October 2022, 86 patients were potentially eligible. However, only ten did not present any exclusion factors (extubation and/or hospitalization less than 72 hours and/or expectation of short hospitalization), and they received the diary. These patients were aged between 19 and 80 years (five women and five men) and had a length of stay ranging from 12 to 63 days. Seven (70%) died in the ICU, and three (30%) were discharged. The time the diary was kept for entries ranged from three to 47 days, from implementation until death or discharge.

Ten family members participated in the study; nine were interviewed as contact was lost with one family member, making the interview impossible. Participants were aged between 18 and 50 years, mostly women (55%) and daughters (55%). The average interview time was 12 minutes. The clinical conditions and severity of the patients prevented them from making entries in the diary.

From the analysis of the interviews with family members, two categories emerged: Benefits of using the ICU diary and Factors that may influence the use of the ICU diary. The themes that composed the categories originated from the participants' statements, as shown in Chart 1.

Chart 1
Distribution of categories and themes according to family members' statements, Porto Alegre, Brazil, 2022.

Categories	Topics	Participants
Benefits of using the ICU diary	Better understanding of critical illness / source of information	F01, F05, F06, F09
	Expression of feelings and greater connection with the patient	F01, F04, F06, F09
	Help with emotional aspects / greater coping	F05, F07, F09
	Help in the patient's recovery	F01, F02, F01, F04, F06, F07
Factors that may influence the use of the ICU diary	Patient conditions	F02, F01, F04, F06, F08
	Restricted visiting time	F02, F05, F08

Benefits of using the ICU diary

Through the family members' statements, it is perceived that the ICU diary can contribute to a better understanding of events related to their loved one's critical illness, as the entries help to remember the events and serve as a source of information:

“It helps a lot because my mind is a bit, you know, messy, I forget many things, it's a lot of information, you know, and reading it gives us more... more information, right” (F01).

“There were some reports from some nurses here, so seeing that to know how it was is very important, it gives comfort [...] the nurse wrote here when he did this, that... he was well, he complained a little, so knowing how it was [...] they wrote things that made us very calm, you know, to know how the night was” (F06).

Using simple language without technical terms in the entries made by professionals is important because it enables proper understanding by family members:

“It's very clear here how she was, she really was like that, it's very clear and in a language we understand” (F05).

“They tried to be more human, you know [...] having a certain ethics, because it would be unethical if they said 'she currently has a possibility of septicemia etc, etc, and etc... there are people who don't know what septicemia is, right? [...] what touched my feelings, my emotional side, was this more common, more... normal, more layman's approach” (F09).

Reading the professionals' entries aroused emotions and gratitude in the family members, as evidenced by their statements:

“It's very touching and at the same time gratifying to know that everyone cares about her and wants her well, but it's... touching” (F01).

“Another moment I felt very emotional was reading the professionals' entries too” (F04).

“There were nurses who wrote here, all rooting for her, supporting her, saying they were doing what they knew, what they could for her [...] it was a very good show of support, I liked it [...]” (F09).

Additionally, when family members feel powerless in the face of ICU hospitalization, the diary can help them feel closer and more connected to the patient:

“It was a moment when we managed to talk to him without him being there talking to us [...] he was intubated and we could only see him, but there was nothing to say, we were just in that distress inside” (F04).

“But the diary thing is very good because sometimes he was very quiet, and we didn't know what to do, and just by our presence being there with him for half an hour, I would write, tell, and talk to him every day” (F06).

The diary seems to be an instrument that also helps the family member in the emotional aspects related to coping with the situation:

“It was good to do it too because I could look at the photos and remember many happy moments, choose the photos that I know he liked, moments of him fishing, moments with the family having fun, right [...] I think it's a way for us to let it out” (F07).

“You can express what you're feeling, right? Sometimes, by writing, it feels like you can express better, you know? Because when you keep the situation to yourself, you feel tense, you know? [...] the entry itself can take you out of the problem, as if you were describing the situation, in a subtle way you distance yourself from the problem, you externalize, literally you become less attached to the situation itself, and you can let it out” (F09).

Family members of patients who died appreciated receiving the diary and also expressed gratitude for the care provided, as reading it made them realize that their loved one received proper care during the ICU stay, which can help with coping and grieving:

“It was very, very interesting, and receiving it now is more... how can I tell you, it's touching to see what you did for her here, the treatment you were giving her, it's very good” (F05).

“Oh, I'm happy because I can see he was well cared for, well looked after, I liked it a lot” (F07).

“There is a saying, I think it's an American saying, that the knife that cuts also spreads [...] and this diary, I think for most people... nowadays it's comforting” (F09).

Regarding the benefits for the patient, family members believe the diary can help fill memory gaps, providing information about events that occurred during the ICU stay:

“Now at this moment it must feel like a sleep where you don't know how much time has passed, right, he has been there for about 30 days, even to be a record of what's happening [...] filling those time gaps, right, that will stay there” (F02).

“Maybe he will remember some things that were forgotten [...] or something that will even help in his recovery [...] it will help maybe with some memory, because yesterday I asked about my sister and he doesn't remember... maybe in the future the diary can help with that, right?” (F04).

“I think it would be good for her to remember later what she went through and that she got out of it” (F03).

“His last day of feeding was September 3, so today is already the 14th [...] so it's written here, how many days he went without putting a spoon of food in his mouth [...] so there is all those days, what he ate... the porridge he didn't like... his daughter's birthday” (F06).

They also believe that the writings referring to the emotional support the patient received during their stay in the ICU can assist in post-ICU recovery:

“It is a memory that she will have later, of life, of the people who came to see her, who love her and are writing there, right” (F01).

“Leaving it there for the patient, whoever visits, for the patient to read later, right, see oh… you know, whoever comes there to give strength, to give a… it's really good, you know” (F08).

“The person will feel good, feel cared for, will see 'wow, my family members came, my family members were here rooting for me, right' [...] I think it gives a lot of strength for the person to want to fight” (F07).

Factors that may influence the use of the ICU diary

According to the family members, unfavorable conditions of the patient can hinder the writing process in the diary, due to the difficulty of dealing with emotions:

“Most people come and get nervous seeing her there and end up leaving, when they are out on the street they remember they should have written, you know?” (F01).

“It’s a kind of... turbulent feeling of the current situations, right, I have seen that he has not had many improvements and is in a very serious condition, right, there are several situations, so it was difficult to express oneself there” (F02).

“At the same time that it's good, it's complicated, right, you... you don't have the mindset, sometimes you arrived and didn't even remember, seeing the person there, all intubated, full... I've never seen so many wires in my life, that is very intense” (F08).

On the other hand, they seemed to feel more motivated and encouraged to write when the relative was more stable:

“At first, we didn't fill it out much, but it was a difficult time too... over time, we managed to kind of stabilize and could fill it out, but at the beginning it was complicated, we came here desperate” (F04).

“The beginning was very complicated, because actually I saw him there like that, leaving, right, actually then each day afterwards was an improvement” (F06).

The restricted visiting time proved to be a barrier, both for writing in the diary and for reading other records. In the study's ICU, extended visiting hours had already been implemented before the COVID-19 pandemic, allowing family members to spend up to 12 hours with patients. However, this type of visit had not yet been reinstated during the data collection period. Family members had two 30-minute periods per day for visits. Due to the short period, often the family member prioritized the time to stay at the bedside with their loved one.

“The thing is that the time I come is kind of limited to see him” (F02).

“Every time I arrived there was a new piece of information and then I didn't have any more time, I always arrived and tried to write something, then the doctor or nurse would come and already comment and I would leave with my head... so unfortunately I couldn't write” (F05).

“I didn't get to read, right, I just wrote there, also because we didn't have much time, right [...] sometimes we had to take turns among four to be able to see her, right [...] it was only half an hour and since there were always a lot of people there, we stayed for a short time, sometimes for ten minutes, five minutes only” (F08).

Besides the family members, 12 nursing team professionals were potentially eligible Five professionals participated in the discussion group, all women, most from the afternoon shift (90%), aged between 33 and 41 years. Almost all were nurses (90%), with professional experience in ICU for 13, 11, 10, and three years.

From the data analysis obtained through the discussion group with the nursing team professionals, three categories emerged: Improvement in connection with the patient and family; The diary as a source of information; Ethical aspects related to the records. The themes that comprised the categories originated from the statements of the nursing professionals, as evidenced in Chart 2.

Chart 2
Distribution of categories and themes according to the statements of the nursing professionals, Porto Alegre, Brazil, 2022.

Categories	Topics	Participants
Improvement in connection with the patient and family	Humanization of care	P01, P02, P04
The diary as a source of information	Records by professionals as facilitators to family members	P01, P02, P05
Ethical aspects related to the records	Concern about the inappropriate interpretation of records	P01, P02, P03

Improvement in connection with the patient and family

The professionals perceived the diary as an opportunity to improve the connection and bond with the patient and their family, as through the instrument, they also had access to the patient's emotional information, which seems to have the potential to humanize ICU care and center it on the patient and their family.

“I thought the diary brought us closer to the patient and the family, because you create a bond, you know his nickname, what he likes to do, who he supports, so it brought me closer to the patients who had a diary too, I got to know the patient more, it wasn't just some patient” (P04).

The photos that the family members brought to put in the diaries had a positive impact, sensitizing the professionals, as evidenced in the statements:

“The photos always make me... always touch me [...] sometimes it’s nothing like that patient there, but you start to imagine, like, it’s a father, a son, a brother, he’s not a patient... it's that story... he’s the love of someone’s life, right, and that’s where I think you can create this connection when you see the photo, see the family” (P01).

“I think having the photos is very important, we feel very close, it’s really nice to have the photos and to see the person, right, because usually that person doesn't come to us, right” (P02).

The diary as a source of information

Like the family members, the professionals also believe in the ICU diary as a beneficial instrument to provide information that helps understand the situation and events related to the patient's critical illness.

“I ended up writing exactly what happened, what I did for her, that she was getting much worse, everything that was happening, even thinking about a future moment, which I think is really the idea, not just for the patient, but for the family to read, and understand what was done for her, right, not just that she got worse and sometimes has a negative outcome of death anyway, but what happened here, what we did for her, what we said to her and all that care, you know?” (P05).

“When we have this kind of opportunity, like when she got worse [...] to guide the family in some way” (P01).

The chronological information about the patient's ICU stay and the daily event reports, besides seeming to have the potential to understand the disease, also seem to help the family process and accept the outcomes, as indicated in the statement:

“The family was in that indecision about moving to palliative care or not, and at that moment they started to sedate him more, he was agitated, spent the nights agitated [...] and that day I went in, he was sedated, more sedated, with that calm expression, I said today I’m going to write, so that the family in some way could understand that everything is fine, you know? [...] it was the day the family decided it was enough, so I think it was a way to say 'you did the right thing, it was the best decision you made,' you know?” (P01).

“For the family to read and understand what was done for her, right, not just that she got worse and sometimes has a negative outcome of death, anyway, but what happened here, what we did for her, what we said to her and all that care, you know?” (P02).

Ethical aspects related to the records

Some participants felt apprehensive about the ethical and legal aspects involving the diary entries. There was concern about the possibility of their records being interpreted inappropriately, either by the patient later or by the family, as noted in the statements:

“I keep questioning: what can I write, what is acceptable, right? [...] my fear is if suddenly you say something and the family doesn't understand well, right? [...] for me that was the biggest obstacle... creating false hopes in the family, right? [...] the family read 'oh great, she is getting better,' then the family already clings to the tiniest thread of hope” (P01).

“These days I went through a situation with a family member, nothing written, but spoken, that she came to ask me, and she understood what she wanted to understand at the time, imagine something written, you know?” (P03).

From these statements, suggestions emerged:

“Maybe we could have some guidance on how to write there, what to write, right?” (P03).

“If they are aware and close, and can see what we are doing and understand, I think it becomes easier, you know? [...] I think bringing it closer especially when there is something written, you know?” (P02).

DISCUSSION

This study made it possible to identify the perception of family members and the nursing team regarding the implementation of a diary in the care routine of critically ill patients.

The interviews with family members allow us to infer that they saw the diary as an important source of information that helped them understand the processes related to their loved one’s illness, findings corroborated by other authors.⁸,¹⁴ Access to the information recorded in the diary, so that family members can reread and remember, can enable a deeper understanding of the critical illness.¹⁴ One of the essential factors for using the diary for this purpose is the use of simple language by professionals, as mentioned by the family members in this study's interviews, as well as in others,¹⁹,²⁰ which also consider the instrument a reliable source of information about the patient’s daily life in the ICU.

The interviews allowed us to infer that family members consider the diary important for their loved one’s recovery after discharge This is possible due to the records of information and significant events kept by family members to aid in memory recovery.⁸ This is also evidenced by the perspective of patients, as reported in a study from the United Kingdom in an oncology ICU, where diaries were implemented for 50 patients. Almost all of those who received the intervention (90%) felt that the diary helped them fill memory gaps resulting from their ICU stay.²¹

Contrary to our findings, where the improvement of the patient's clinical condition seemed to be a motivational factor for writing, an American study involving 19 family members found that, for more than half of the participants (53%), writing in the diary became less relevant after the patient's improvement. Another limiting factor for the family's motivation to participate was the doubt about whether the patient would be interested in the diary later on.¹¹ In our study, however, family members felt encouraged to write because they believed that the patient would appreciate reading the records later.

According to the family members in the study, the diary can help with emotional aspects, although dealing with emotions was one of the challenges for writing, as they reported difficulty writing in the face of feelings such as fear, nervousness, and the impressions caused by the patient's condition or technological apparatus. The diary is useful for venting feelings, emotions, and anxieties, and also for expressing hope for their loved one's recovery.⁸,¹⁹ A Japanese study comparing the experiences of families of critically ill patients hospitalized for COVID-19 before and after implementing an ICU diary found that families were anxious and pessimistic before the intervention; afterward, these feelings were mitigated, leading to more positive perspectives and a better experience.²²

By using the diary, family members reported feeling more involved and connected to the patient, which is supported by literature describing the diary as a usual form of communication that helps families feel part of the care process and reinforces bedside presence.¹³,¹⁹ Besides allowing communication with the patient, the diary has the potential to become a means of communication between the family and the nursing team, fostering interaction, trust, unity, and support among them.¹⁹

Findings also showed that families of patients who passed away appreciated receiving the diary, and feelings of emotion, recognition, and gratitude emerged. Literature supports these findings as ICU diaries have helped increase family members' trust in the team and the healthcare system by conveying the sensitivity and humanization of the nursing team.¹⁹ Although some family members avoid reading the diary after the death of the patient, as they are not prepared to relive the events, others may find comfort in it. Thus, the diary can also aid in coping and mourning, helping to better assimilate and deal with death.¹⁹,²³

The short visiting period was identified by family members as a hindrance to using the diary. Indeed, the continuous presence of the family member in the ICU seems to be a positive factor for using the tool, providing more time for writing.¹¹

Nursing professionals who participated in the study mentioned that the relationship and connection with the patient and family deepened with the use of the diary. Supporting these findings, an American study conducted with the nursing staff of a military hospital, before and after implementing an ICU diary, found that initially, only 25% of professionals felt more connected to the patient; this percentage doubled after implementing the diary. Additionally, post-implementation, 90% of these professionals felt their work made a difference (versus 31% before) and 80% felt the diary could also benefit the team (versus 50% before).²⁴

Professionals used the diary to provide support and describe information about the patient's condition and critical illness, believing it would help both the patient and family. A study conducted in Norway found that nurses consider it important to contextualize the days the patient spends in the ICU through records to give meaning to the hospitalization period, during which memories can be lost. They also recognized how much the diary means to patients, prompting them to make efforts to write individualized and personalized entries, also encouraging them to develop a deeper relationship with the patient and their family. However, when patients pass away, professionals deal with the diary's fate in different ways. For some, it is natural to hand it over to the family, while others find this process difficult.²⁵

During the discussion, concerns related to the ethical aspects of using the diary emerged, which has indeed been reported as a challenge for the nursing team. They need to express themselves honestly about the events of the hospitalization while being cautious with the words and terms used. There are doubts about whether to report intimate and complex events. Additionally, some nurses feel uncomfortable signing the entries and prefer not to identify themselves.²⁵ There are also legal concerns about potential lawsuits from the family or the patient.¹⁴,²⁴

The photographs brought by the family members of the patients in the study seemed to be a good complement to the diary, sensitizing the team and conveying the affection of the family network. No photos of the patients during ICU hospitalization were included, as seen in other studies,¹⁹,²⁶ which consider that while such records (reflecting the patient's condition in the hospital) are important for making the hospitalization more understandable, they should be treated with caution to avoid exposing the patient, who is generally vulnerable.²⁷

During implementation, some barriers and challenges were identified, such as the difficulty of initially approaching family members, the short visiting period, the patient's unfavorable conditions, and the professionals' concerns about ethical aspects—similar to those found in other centers that have used ICU diaries.²⁶,²⁸

FINAL CONSIDERATIONS AND IMPLICATIONS FOR THE PRACTICE

The study allowed us to verify, from the perceptions of critically ill patients' family members and the nursing team, that the diary is a beneficial intervention for families and potentially for the patient when they recover and can access the diary. Both groups, family members and professionals, expressed liking the tool, recognizing that it can help the patient recover memory gaps due to critical illness, assist the family with emotional aspects, and understand facts about the hospitalization, as well as strengthen the connection between the patient, family, and nursing team.

In this study, it was recommended to implement the diary after 72 hours of admission, considering that patients with a prospect of longer hospitalization would allow for a greater number of records and follow-up time. Despite the attempt at early initiation, one limitation was the difficulty in finding the family for initial approach and consent, which sometimes delayed the diary's implementation. During implementation, some barriers and challenges were identified, also evidenced in similar studies.

Identifying difficulties during the process is important to structure strategies to increase adherence. Reducing failures and gaps in implementing a diary requires consistent workflows, especially concerning ethical and legal aspects, to support professionals and facilitate participation. The family's involvement and presence in the ICU are crucial, as they establish a trust relationship with the team.

ICU diaries have been a strategy to promote psychological needs and improve the quality of life of patients and their families, as well as to prevent PICS and PICS-F. Further studies are suggested to assess patients' perceptions and the long-term outcomes of using these tools.

Acknowledgments

The authors of the study thank the patients, families, and nursing professionals who participated, making its realization possible.

REFERÊNCIAS

• ¹
  Zhang Z, Spieth PM, Chiumello D, Goyal H, Torres A, Laffey JG et al. Declining mortality in patients with acute respiratory distress syndrome: an analysis of the acute respiratory distress syndrome network trials. Crit Care Med. 2019;47(3):315-23. http://doi.org/10.1097/CCM.0000000000003499 PMid:30779718.
  » http://doi.org/10.1097/CCM.0000000000003499
• ²
  Hofhuis JGM, Schrijvers AJP, Schermer T, Spronk PE. Health-related quality of life in ICU survivors-10 years later. Sci Rep. 2021;11(1):15189. http://doi.org/10.1038/s41598-021-94637-z PMid:34312447.
  » http://doi.org/10.1038/s41598-021-94637-z
• ³
  Geense WW, de Graaf M, Vermeulen H, van der Hoeven J, Zegers M, van den Boogaard M. Reduced quality of life in ICU survivors - the story behind the numbers: a mixed methods study. J Crit Care. 2021;65:36-41. http://doi.org/10.1016/j.jcrc.2021.05.008 PMid:34082253.
  » http://doi.org/10.1016/j.jcrc.2021.05.008
• ⁴
  Vrettou CS, Mantziou V, Vassiliou AG, Orfanos SE, Kotanidou A, Dimopoulou I. Post-intensive care syndrome in survivors from critical illness including COVID-19 patients: a narrative review. Life. 2022;12(1):107. http://doi.org/10.3390/life12010107 PMid:35054500.
  » http://doi.org/10.3390/life12010107
• ⁵
  Yuan C, Timmins F, Thompson DR. Post-intensive care syndrome: a concept analysis. Int J Nurs Stud. 2021;114:103814. http://doi.org/10.1016/j.ijnurstu.2020.103814 PMid:33220570.
  » http://doi.org/10.1016/j.ijnurstu.2020.103814
• ⁶
  Serrano P, Kheir YNP, Wang S, Khan S, Scheunemann L, Khan B. Aging and postintensive care syndrome-family: a critical need for geriatric psychiatry. Am J Geriatr Psychiatry. 2019;27(4):446-54. http://doi.org/10.1016/j.jagp.2018.12.002 PMid:30595492.
  » http://doi.org/10.1016/j.jagp.2018.12.002
• ⁷
  Johnson CC, Suchyta MR, Darowski ES, Collar EM, Kiehl AL, Van J et al. Psychological sequelae in family caregivers of critically III Intensive Care Unit patients: a systematic review. Ann Am Thorac Soc. 2019;16(7):894-909. http://doi.org/10.1513/AnnalsATS.201808-540SR PMid:30950647.
  » http://doi.org/10.1513/AnnalsATS.201808-540SR
• ⁸
  Tripathy S, Acharya SP, Sahoo AK, Mitra JK, Goel K, Ahmad SR et al. Intensive care unit (ICU) diaries and the experiences of patients’ families: a grounded theory approach in a lower middle-income country (LMIC). J Patient Rep Outcomes. 2020;4(1):63. http://doi.org/10.1186/s41687-020-00229-2 PMid:32705412.
  » http://doi.org/10.1186/s41687-020-00229-2
• ⁹
  Barreto BB, Luz M, Rios MNO, Lopes AA, Gusmão-Flores D. The impact of intensive care unit diaries on patients’ and relatives’ outcomes: a systematic review and meta-analysis. Crit Care. 2019;23(1):411. http://doi.org/10.1186/s13054-019-2678-0 PMid:31842929.
  » http://doi.org/10.1186/s13054-019-2678-0
• ¹⁰
  McIlroy PA, King RS, Garrouste-Orgeas M, Tabah A, Ramanan M. The effect of ICU diaries on psychological outcomes and quality of life of survivors of critical illness and their relatives: a systematic review and meta-analysis. Crit Care Med. 2019;47(2):273-9. http://doi.org/10.1097/CCM.0000000000003547 PMid:30431494.
  » http://doi.org/10.1097/CCM.0000000000003547
• ¹¹
  Mickelson RS, Piras SE, Brown L, Carlile C, Drumright KS, Boehm L. The use and usefulness of ICU diaries to support family members of critically ill patients. J Crit Care. 2021;61:168-76. http://doi.org/10.1016/j.jcrc.2020.10.003 PMid:33171334.
  » http://doi.org/10.1016/j.jcrc.2020.10.003
• ¹²
  Barreto BB, Luz M, Amaral Lopes SAV, Rosa RG, Gusmão-Flores D. Exploring patients’ perceptions on ICU diaries: a systematic review and qualitative data synthesis. Crit Care Med. 2021;49(7):e707-18. http://doi.org/10.1097/CCM.0000000000005019 PMid:33861546.
  » http://doi.org/10.1097/CCM.0000000000005019
• ¹³
  Dryden-Palmer KD. PICU diaries: a simple and promising family-centered intervention. Pediatr Crit Care Med. 2019;20(2):208-9. http://doi.org/10.1097/PCC.0000000000001838 PMid:30720661.
  » http://doi.org/10.1097/PCC.0000000000001838
• ¹⁴
  Barreto BB, Luz M, Amaral Lopes SAV, Rosa RG, Gusmão-Flores D. Exploring family members’ and health care professionals’ perceptions on ICU diaries: a systematic review and qualitative data synthesis. Intensive Care Med. 2021;47(7):737-49. http://doi.org/10.1007/s00134-021-06443-w PMid:34117901.
  » http://doi.org/10.1007/s00134-021-06443-w
• ¹⁵
  Souza VR, Marziale MH, Silva GT, Nascimento PL. Tradução e validação para a língua portuguesa e avaliação do guia COREQ. Acta Paul Enferm. 2021;34:eAPE02631. http://doi.org/10.37689/acta-ape/2021AO02631
  » http://doi.org/10.37689/acta-ape/2021AO02631
• ¹⁶
  Processo-consulta CFM nº 21/2019 – Parecer CFM nº 24/2019 (BR). Definições de unidade de terapia intensiva e unidade de cuidados intermediários Diário Oficial da União [periódico na internet], Brasília (DF), 2019 [citado 2023 out 16]. Disponível em: https://sistemas.cfm.org.br/normas/arquivos/pareceres/BR/2019/24_2019.pdf
  » https://sistemas.cfm.org.br/normas/arquivos/pareceres/BR/2019/24_2019.pdf
• ¹⁷
  Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. São Paulo: Hucitec; 2014.
• ¹⁸
  Resolução nº 466, de 12 de dezembro de 2012 (BR). Trata de pesquisas em seres humanos e atualiza a resolução 196. Diário Oficial da União [periódico na internet], Brasília (DF), 2012 [citado 2023 out 15]. Disponível em: https://conselho.saude.gov.br/resolucoes/2012/Reso466.pdf
  » https://conselho.saude.gov.br/resolucoes/2012/Reso466.pdf
• ¹⁹
  Johansson M, Wåhlin I, Magnusson L, Runeson I, Hanson E. Family members’ experiences with intensive care unit diaries when the patient does not survive. Scand J Caring Sci. 2018;32(1):233-40. http://doi.org/10.1111/scs.12454 PMid:28524380.
  » http://doi.org/10.1111/scs.12454
• ²⁰
  Muñoz-Rey MP, Delgado-Hito P, Juvé-Udina ME, Cuzco-Cabellos C, Huertas-Zurriaga A, Romero-García M. The diary in the intensive care unit: concept analysis. Enferm Intensiva. 2024;35(3):178-87. http://doi.org/10.1016/j.enfie.2023.08.010 PMid:38228417.
  » http://doi.org/10.1016/j.enfie.2023.08.010
• ²¹
  Pattison N, O’Gara G, Lucas C, Gull K, Thomas K, Dolan S. Filling the gaps: a mixed-methods study exploring the use of patient diaries in the critical care unit. Intensive Crit Care Nurs. 2019;51:27-34. http://doi.org/10.1016/j.iccn.2018.10.005 PMid:30573347.
  » http://doi.org/10.1016/j.iccn.2018.10.005
• ²²
  Haruna J, Tatsumi H, Kazuma S, Kuroda H, Goto Y, Aisaka W et al. Using an ICU diary to communicate with family members of COVID-19 patients in ICU: a case report. J Patient Exp. 2021;8:23743735211034094. http://doi.org/10.1177/23743735211034094 PMid:34377772.
  » http://doi.org/10.1177/23743735211034094
• ²³
  Bazzano G, Buccoliero F, Villa M, Pegoraro F, Iannuzzi L, Rona R et al. The role of intensive care unit diaries in the grieving process: a monocentric qualitative study. Nurs Crit Care. 2023;28. http://doi.org/10.1111/nicc.13012 PMid:38015002.
  » http://doi.org/10.1111/nicc.13012
• ²⁴
  Hester M, Ingalls NK, Hatzfeld JJ. Perceptions of ICU diary utility and feasibility in a combat ICU. Mil Med. 2016;181(8):895-9. http://doi.org/10.7205/MILMED-D-15-00210 PMid:27483530.
  » http://doi.org/10.7205/MILMED-D-15-00210
• ²⁵
  Flinterud SI, Moi AL, Gjengedal E, Narvestad Grenager L, Muri AK, Ellingsen S. The creation of meaning: Intensive care nurses’ experiences of conducting nurse-led follow-up on intensive care units. Intensive Crit Care Nurs. 2019;53:30-6. http://doi.org/10.1016/j.iccn.2019.03.009 PMid:31138490.
  » http://doi.org/10.1016/j.iccn.2019.03.009
• ²⁶
  Drumright K, Jones AC, Gervasio R, Hill C, Russell M, Boehm LM. Implementation of an Intensive Care Unit Diary Program at a Veterans Affairs Hospital. J Nurs Care Qual. 2021;36(2):155-61. http://doi.org/10.1097/NCQ.0000000000000510 PMid:32826699.
  » http://doi.org/10.1097/NCQ.0000000000000510
• ²⁷
  Ednell AK, Siljegren S, Engström Å. The ICU patient diary: a nursing intervention that is complicated in its simplicity. A qualitative study. Intensive Crit Care Nurs. 2017;40:70-6. http://doi.org/10.1016/j.iccn.2016.12.002 PMid:28233651.
  » http://doi.org/10.1016/j.iccn.2016.12.002
• ²⁸
  Rogan J, Zielke M, Drumright K, Boehm LM. Institutional challenges and solutions to evidence-based, patient-centered practice: implementing ICU diaries. Crit Care Nurse. 2020;40(5):47-56. http://doi.org/10.4037/ccn2020111 PMid:33000132.
  » http://doi.org/10.4037/ccn2020111

Edited by

Associated editor

Pedro Ricardo Martins Bernardes Lucas https://orcid.org/0000-0002-2560-7306

Scientific editor

Marcelle Miranda da Silva https://orcid.org/0000-0003-4872-7252

Publication Dates

• Publication in this collection
  16 Aug 2024
• Date of issue
  2024

History

• Received
  20 Dec 2023
• Accepted
  28 May 2024