Keeping an ICU patient diary has been reported to benefit the patient's recovery. Here, we investigated the families' experience with reading and writing in patient ICU diaries kept by both the family and the staff.
We conducted a qualitative study involving 32 semi-structured in-depth interviews of relatives of 26 patients (34% of all family members who visited patients) who met our ICU-diary criterion, i.e., ventilation for longer than 48 hours. Grounded theory was used to conceptualise the interview data via a three-step coding process (open coding, axial coding, and selective coding).
Communicative, emotional, and humanising experiences emerged from our data. First, family members used the diaries to access, understand, and assimilate the medical information written in the diaries by staff members, and then to share this information with other family members. Second, the diaries enabled family members to maintain a connection with the patient by documenting their presence and expressing their love and affection. Additionally, families confided in the diaries to maintain hope. Finally, family members felt the diaries humanized the medical staff and patient.
Our findings indicate positive effects of diaries on family members. The diaries served as a powerful tool to deliver holistic patient- and family-centered care despite the potentially dehumanising ICU environment. The diaries made the family members aware of their valuable role in caring for the patient and enhanced their access to and comprehension of medical information. Diaries may play a major role in improving the well-being of ICU-patient families.
Citation: Garrouste-Orgeas M, Périer A, Mouricou P, Grégoire C, Bruel C, Brochon S, et al. (2014) Writing In and Reading ICU Diaries: Qualitative Study of Families' Experience in the ICU. PLoS ONE 9(10): e110146. https://doi.org/10.1371/journal.pone.0110146
Editor: Fiona Harris, University of Stirling, United Kingdom
Received: April 30, 2014; Accepted: September 16, 2014; Published: October 16, 2014
Copyright: © 2014 Garrouste-Orgeas et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: The authors confirm that all data underlying the findings are fully available without restriction. All relevant data are within the paper.
Funding: The authors received no specific funding for this work.
Competing interests: The authors have declared that no competing interests exist.
For family members, having a patient in the intensive care unit (ICU) is a highly stressful experience. The French FAMIREA group reported symptoms of anxiety and depression in 69% and 35% of family members, respectively; as well as post-traumatic stress symptoms in 33% . Restricted visitation policies , , poor communication with the staff , poor comprehension of the medical information about the patient , participation in decision-making about patient care , lack of support from the staff, and fear for the patient contribute to cause distress in family members . High levels of distress in family members have been reported not only during the ICU stay, but also during the next several months .
Strategies designed to help family members actively provide support to themselves and to the patient include broad visitation policies , , , involvement in nursing care , and participation in keeping a patient diary during the ICU stay , . ICU diaries were introduced in the 1980s in Denmark by nurses, as a patient debriefing tool for use after ICU discharge. ICU staff participation seemed important to the effect of diaries in decreasing anxiety among family members . ICU diaries are usually kept by both staff members and family members. Studies have assessed the impact of ICU diaries on long-term outcomes of patients , , , , ,  and families . The use of ICU diaries was associated with decreased symptoms of anxiety, depression , and posttraumatic stress in both patients  and families ,  at various time points after ICU discharge. The diaries enabled survivors to make sense of their ICU experience . Qualitative studies established that ICU diaries were useful in describing the patient's environment in the ICU; building a time line of health-related events; inserting the time line of the patient's experience within that of the family, community, and world events; demonstrating the continuity of the patient's life; expressing feelings and emotions; and documenting the presence, commitment, and supportive role of the staff and family , , . Despite this growing empirical evidence, family members' experience with ICU diaries has rarely been investigated. To learn from family members how writing in and reading ICU diaries affected their experience in the ICU, we conducted a qualitative study based on an inductive grounded theory approach. Our findings provide new insights into the benefits of ICU diaries for families.
We conducted a qualitative study to obtain new insights into a topic about which little published information was available. More specifically, to shed light on the families' account of their situation, we chose the grounded theory approach. The methods and procedures of grounded theory involve cycles of data collection and analysis to identify interrelations among concepts, which eventually aggregate into an integrative theory , . The study was approved by the appropriate ethics committee (Pitié-Salpêtrière Comité de Protection des Personnes).
The substantive area in which we have performed our study was the 10-bed medical-surgical unit of the Saint Joseph Hospital Network in Paris, France. This ICU has placed strong emphasis on family-centred care, with around-the-clock visitation  and participation of family members in patient care . All the patients were admitted to the same ICU and received care from the same staff.
Content and use of the diaries
Since 2009, ICU diaries are kept by the ICU staff (physicians, nurses, and nursing assistants) and families . The diaries were not part of the official clinical records of the patients. The ICU diary is in a folder placed in plain view in the patient's room. ICU staff attended lectures and discussions on writing in the diaries. There was a single diary per patient, which was used by both the staff and the family. Patients ventilated for more than 48 hours had a diary created as soon as possible by their ICU physician. All physicians in the unit could create diaries. The physician started the diary with an account of the initial medical event. Then, all staff members could write about events experienced by the patient in the ICU; they wrote in the diaries during their normal working hours, including those spent in ICU meetings about patient care. The ICU staff addressed personally to the patient. Both positive and negative changes could be recorded in the diary, although physicians were not obligated to provide complete medical information. Nosocomial and iatrogenic events were entered as part of the medical information about the patient. Relatives were invited directly to write freely in the diaries, without guidance from the ICU staff. The only instruction given to families and staff members about diary entries was to refrain from writing about confidential matters that should not be shared among the patient, all relatives, and the staff. Staff members were free to express compassion and their hope, or the absence thereof, that the patient would recover. Our previous study about the experience of the staff with ICU diaries showed that most of the staff members read the entries by the families . No patients wrote in the diaries. At ICU discharge, the diary was given to the patient if he or she had recovered and to the family otherwise.
Data collection and analysis procedures
In keeping with our focus on the family members' experience with the ICU diaries, we conducted semi-structured interviews of families' members. We used the grounded theory approach , , which involves moving back and forth between data collection and analysis until the emergence of a theory that fits the data.
The participants were selected via theoretical sampling: that is, we included individuals likely to provide the information we needed. The data obtained from the first study participants determined which new categories of participants we needed to include . Thus the sample size is governed by the spectrum of data needed to develop a theory, which cannot be determined before data collection starts. The goal is not to obtain a statistically representative sample. Family members were defined as all relatives and friends who visited the patient. We interviewed families if French was their native language and their patient stayed longer than 48 hours in the ICU, and had an ICU diary. Several family members could be included for the same patient, as experience might differ according to the relationship with the patient. For each family member, we recorded age, gender, relationship with the patient, and educational level. The data recorded for each patient were age, gender, reason for ICU admission, severity of illness assessed using the Simplified Acute Physiological Score (SAPS II) based on the worst physical and laboratory data during the first 24 hours in the ICU  and type of admission (medical, scheduled surgical, or emergent surgical).
The main investigator (MGO) invited the family members to participate in the study. Each family member was interviewed at patient ICU discharge to ensure that the full ICU experience was captured, while avoiding the inconvenience and possible distress associated with having to return to the ICU after discharge. Prior to the interview, each participant gave written informed consent to the audio-recorded interview. An in-depth semi-directive interview was conducted by either a psychologist (MT) or a physician (MGO), both of whom were trained in qualitative data collection. The psychologist was hired specifically for the study and did not belong to the ICU staff. The physician (MGO) is on the ICU staff and dedicates most of her time to research; she does not participate in bedside patient care. In accordance with Charmaz guidelines , the interview guide was composed of informational questions followed by reflective and feeling-oriented questions (Table 1). Each interview lasted about 1 hour and was conducted in a quiet room in the hospital. The interviews were recorded and transcribed. To simplify the data analysis process, the data rendered anonymous only after data analysis was complete.
First round of data collection
We first interviewed 22 family members between November 2012 and June 2013. We analysed their data and developed a provisional theory. As the study was exploratory, we used a three-step analysis process to move from a descriptive coding scheme to a more analytical one, through progressively increasing abstraction. For data analysis, we used the insider-outsider approach: researchers with experience in research in the ICU worked jointly with researchers who were new to this field. This approach strengthens the trustworthiness of research results by interconnecting interpretations made by people having different levels of understanding of both empirical research and the ICU context of care. Consequently, the analysis was done by MGO and two other individuals (AP and PM), who were not on the ICU staff and who had previously been trained in grounded theory procedures.
Open coding was the first step. We developed a fine-grained coding scheme by collaboratively analysing the interview transcripts during a workshop. Each workshop participant (MGO, AP, PM) then coded the interviews independently. The results were compared and discrepancies resolved by consensus. The first version of the coding scheme had 46 categories and sub-categories. In accordance with Creswell , at this stage of the analysis, we began to identify the most illustrative excerpts for later access and possible inclusion in the study report.
Results of the preliminary analysis
Our preliminary analysis established that most interviewees both read and wrote in the diaries. Therefore, the analysis could not use one or the other of these two activities (reading and writing) as the central focus. Furthermore, the lead researcher initially felt that family perceptions about the design of the diary (format, material, and appearance) would be of interest. However, the interviewees consistently felt satisfied with the design of the diaries. Consequently, the question in the interview guide about diary design was removed. No other questions in the guide were removed, added, or changed.
Second round of data collection
We interviewed 10 additional family members between July 2013 and October 2013. The data collection procedure was the same as for the first round, except for the removal of the interview-guide question on diary design.
We performed axial coding to view the data from a higher degree of abstraction and to uncover deeper patterns. Several subcategories were subsequently relabeled and reorganized as first-order properties of the emerging data structure. Comparison of the data from each new second-round interviewee to the existing data identified three categories, as detailed in the results section. During this phase, we also used in vivo coding (i.e., we used interviewees' words to label categories) to conceptualize the ICU experience based on the family members' perceptions. Saturation was defined as failure of data from new interviewees to generate new properties or induce changes in the data structure.
Finally, the third step consisted in selective coding to integrate and synthesise the categories derived from the analysis. In line with our research question, we paid special attention to the outcomes of the previously defined categories. These findings are reported in the results section (“Family Experience in Context” subheading). The analysis was performed in French. All quotes were translated for publication by an American physician and medical writer.
We interviewed 32 family members. Our sample was composed of 34% of the family members who visited patients ventilated for more than 48 hours. Their main characteristics and those of the corresponding patients are shown in Tables 2 and 3, respectively. The final data structure contained 13 first-order concepts, six second-order themes, and three aggregate dimensions: communication, emotional experience and humanization experience of the staff and patient (Table 4).
A communicative experience
The diaries, historically conceived as a patient debriefing tool, had major effects on family members by enhancing access to and assimilation of medical information about the patient (13/32 families members, 41%) and by helping to share various types of information among family members (5/32, 16%).
Access to and assimilation of medical information about the patient
Although the families attached considerable importance to information delivered orally by the staff, they felt that information written in the diaries was more reliable and more powerful, particularly in the area of medical information. Family members who read entries signed by the physicians no longer felt the need to check by asking questions of other staff members. ‘There is no need to ask the same thing over and over again …we don't ask about the information in the diary, because it's written down’ (31-year-old daughter). Family members sometimes felt the information was insufficient or irregularly provided. ‘I'd like the doctor to write in the diary more often; an entry every day would work for me: I'd know what he thinks from day to day about the changes in my father's condition’ (48-year-old daughter). The family members did not focus only on the information written by the physicians: entries by other staff members were also read with interest, as they bore witness to what happened at times when no family members were in the room. ‘The diary let me know what happened at night, when I wasn't there’ (45-year-old mother). Some family members, however, seemed reluctant to read entries intended for the patient and to intrude into the intimate patient-staff member relationship (4/32, 12%) ‘When I read the entries by the staff members, I feel they're not intended for us and that I'm reading something that's none of my business’ (74-year-old spouse).
In addition to facilitating access to medical information, the families felt that the diary improved comprehension of the information, because the staff, particularly the physicians, made greater use of everyday terms for the written entries than for the oral information. Furthermore, a very powerful characteristic of the diaries was the possibility for the family members to read the entries as often as they wished, which helped them to assimilate the information. In addition, they could read the entries again at the time of their choosing and at their own pace, when the conditions were optimal for them, and they could rebuild the patient's story and assess the changes over time whenever they felt the need and regardless of the course of the patient's clinical condition. ‘Since it's written down, we can read it as often as we want to – and to be honest, I've read the diary at least 15 times, and when I read your first entry I understood it but I read it again and again because each time I needed to read everything from the beginning’ (21-year-old daughter).
Sharing information among families members
The diary served as a channel of communication among the family members. It allowed all family members to have access to the medical information and to obtain news about the patient on a daily basis. ‘I just write that in the diary, so that the people who come to visit after me know, even if they don't necessarily have all the information’ (45-year-old sister-in-law). The main function of the diary was to provide opportunities for cooperation between the staff and family in the service of the patient and to record the medical and non-medical events that would allow the patient to re-build the gap in his or her life and the connection with the family members. ‘…so the diary lets him know what happened day by day in our family, who came to visit him, what happened to him, what progress he made’ (62-year-old spouse). Additional diary entries are provided in the online-only supplement (Table 5).
An emotional experience
The ICU stay is usually a severely traumatic experience for families. The diary helped the families understand and cope with potentially overwhelming emotional experiences. The diary produced strong emotions in the family members as they documented their presence at the patient's side, expressed their affection or love for the patient (19/32, 59%), confided their intimate feelings, and struggled to maintain hope (13/32, 41%).
Documenting presence, expressing love or affection
The dated and signed diary entries bore witness to the presence of the family members at the patient's side. ‘That way he'll realise that he's not fighting this alone… as I explain to him in the diary, I can't be physically present – instead, I'm physically present in the diary’ (35-year-old daughter). The vulnerability of the patient encouraged the family members to say things they had never said before. ‘I felt the need to tell him that I love him, that I have always loved him, although we've been living separately for several years’ (53-year-old wife). The written diary entries served as complements to what was said to the patient. The diary created greater continuity of communication over time, by leading the family member to engage in an intimate inner dialogue with the patient. ‘Writing in the diary was life-giving for me – it's as if, since he couldn't answer me or hear me, he came to life through the writing’ (62-year-old sister-in-law). Communication usually took the form of a dialogue with the patient, although occasionally the diary served as a personal journal in which the family members confided their fears, anxieties, enthusiasm, or optimism. ‘Using the diary allowed me to resume the dialogue with him. I continued to talk to him as if he were there. And the day I started writing in the diary, I began to be able to talk to him’ (62-year-old wife). Once the dialogue was established, the personal history with the family member could continue to unfold. A connection was formed with the outside world, and the family circle concept regained its meaning. ‘When I sit down (by his side) and write in the diary, time seems to stop and I feel I can finally settle down and take a brief look at the short day I spent with him’ (35-year-old daughter).
Confiding in the diary and maintaining hope
The diary offered a means of organising the inner dialogue with oneself or others, of putting names on emotions that were often powerful and overwhelming, and of expressing those emotions by incorporating them into a narrative. In this way, the writer began to find some distance from the strong emotions. ‘I also felt I was confiding in the diary. I was able to say things, my feelings for him that he couldn't hear me describe, all my pain, all the joy I felt at seeing that he was a tiny bit better…. I could open my heart to it – the diary became my confidante’ (45-year-old mother). The diary was the only document shared by the family and staff in the service of the patient. The continuous communication via the diary influenced the family's relationship with the staff, and the wishes for recovery expressed by the staff generated hope in the family members that an improvement was possible, thus changing the family's experience. ‘I believe that a doctor who writes ‘today, you were able to do this, well, I think that's far more powerful than just saying it. I believe the doctor chose his words and thought carefully about what to write, so the words really mean something So that helped me a lot’ (62-year-old wife). As shown by the verbatim passage below, another factor that maintained hope was the better emotional regulation that resulted from writing in the diary. ‘…It's thanks to being able to write in this diary… Writing gave me hope - it felt as if I was talking to him (in the diary), so nothing was lost.’ And the wife of this patient continued: ‘And little by little, that made me more confident, and I'd say to myself “We're going to make it, we're going to make it”’ (62-year-old wife). However, changes in the condition of the patient affected the way the families used the diary, as illustrated by the two excerpts below. In the first case, as the condition of the patient improved, his wife wrote less often in the diary. ‘It's the fact of being conscious or not – as long as he was unconscious, in an artificial coma, I used the diary to write his story … when he regained consciousness, I continued the story a bit, but with fewer details – the need wasn't as great’ (52-year-old wife). In the second case, the patient's condition deteriorated and her daughter became aware that she would be unable to read the messages. ‘It's not that I gave up, but I thought, she won't read it - she wouldn't read it, so… it's not that it was useless, not at all, but I was troubled when I took the diary this time, for the first time’ (21-year-old daughter). Additional diary entries are provided in the online-only supplement (Table 6).
A humanising experience
The last dimension of the diary-related experience as perceived by the family was humanisation of the staff, together with an awareness that the staff viewed the patient as a living human being (8/32, 25%). The diary changed the way the family members viewed the staff and, through the support expressed by the staff, changed the way they viewed the patient (8/32, 25%).
Change in perceptions of the staff
The diary changed the families' perceptions of the staff. The contribution of the staff to keeping the diary and the time devoted by staff members to the diary outside the regular working hours were seen by the families as signs of consideration, emotional involvement, and empathy. ‘You're a doctor, you took care of her too, but you also took the time to write about your concerns and your joys and to give your encouragements, and we will never forget all that’ (21-year-old daughter). The family members no longer perceived the staff as only healthcare professionals but also saw them as people like them, since they expressed emotions. In this way, reading the diary humanised the staff members, particularly the physicians. ‘I think it's important that the doctors communicate at our level…but at least they take the time, they create a level field. It's not the doctor speaking, it's the human being, who gives information – and obviously it's medical – but it's a human being speaking to another human being’ (35-year-old daughter).
Change in perceptions of the patients
The consideration and support given by the staff to the patient resulted in humanisation of the patient. The entries by the staff portrayed the patient as a living human being at a time when the family had difficulty recognising their loved one in the very ill and usually unconscious person connected to multiple catheters, tubes, and machines. The staff members wrote directly to the patient, describing the changes in his or her clinical condition, thus humanising the patient in the minds of the family members. ‘When I read what the staff members wrote, I really feel they're taking care of a person who is alive’ (62-year-old sister-in-law). The ICU environment and the severity of the illness cast a veil over the patient's dignity and humanity, and this veil was lifted by the writings of the staff. This change in the way the patient was perceived helped the family get through the ICU stay. ‘The diary breathes strength into us, strength and a kind of serenity, of confidence, since what was written also was a source of confidence’ (42-year-old daughter). Additional diary entries are provided in the online-only supplement (Table 7).
The families' experience in context
In sum, grounded theory analysis of the interview data suggested the following model (Figure 1). The families perceived the diaries as promoting the acquisition and assimilation of medical information and, in collaboration with the staff, as providing an account of the patient's stay in the ICU. By documenting their presence, the diary connects the family members to the patient and ensures continuity of the family story during the ICU stay. Participating in the diary arouses strong emotions in the family members and allows them to express those emotions, thereby gaining distance and improving their emotional regulation capabilities. Finally, the diary changes the family members' perceptions of the staff and contributes to humanize their ICU experience.
For family members, participating in an ICU diary generated an emotional experience that built a connection with the patient and ensured continuation of the family story in the ICU. The diary enhanced the communication experience by providing medical information and describing the patient's story. The diary humanized the ICU.
We investigated the experience of ICU-patient family members related to ICU diaries kept by both the family and the ICU staff. We identified three main domains of the diary experience: communication, in which the diary served as an ever-present source of reliable information about the medical condition of patient; expression of emotions, which strengthened the connection to the patient during the ICU stay and helped with emotional regulation; and humanisation of both the staff and the patient.
Routinely creating ICU diaries as a clinical intervention remains controversial , . Our study adds new insights about the benefits to families during the ICU stay and, to our knowledge, is the first investigation of this point, as most of the earlier studies focused on the patients. Analyses of the diary contents have shown how families use the diaries to communicate their emotions and feelings to the patients  and ICU staff . Our results are consistent with this earlier work, as they indicate that reading and writing in the diaries arouse strong emotions in the family members and allow them to express those emotions. The feeling of loss due to absence of the patient from the daily family routine of communication and activities  was alleviated by the ability to communicate with the patient via entries in the diary. Thus, the family remained connected to the patient, who continued to be viewed as a living human being. In addition, the diary served as evidence that the family was actively present. The diary ensured that the patient remained included within the family story, so that the structure of the family remained intact. The ability to confide in the diary may have improved the regulation of emotions and contributed to the well-being of the families. This effect may explain the previously reported beneficial impact of diaries during the post-ICU period , .
Diaries improved both family-staff and within-family communication. Communication is central to family satisfaction . Receiving clear medical information about the patient's status is among the most important family needs . However, the high prevalence of symptoms of post-traumatic stress, anxiety, and depression, most notably within the first few days after ICU admission , affects the family members' perceptions of communication. Quantitative and qualitative studies established that family satisfaction was related to the organisational culture , quality of information , and perceived ICU climate. Comprehension was improved by delivery of the information in a variety of formats (oral and written)  and by availability of the staff for communicating with families . ICU diaries provide written information in everyday language, which can be read as often as desired. Our study showed that families felt the diaries helped them to understand the patient's condition and to assimilate the medical information. ICU diary content varies across countries with or without staff participation , , . In our ICU, the physicians contribute to the narration of the patient's illness in the diary. The families felt that the information written by physicians in the diaries was more powerful and more trustworthy than oral information. Thus, having the physicians contribute to the ICU diaries may help to improve the family's comprehension of the patient's situation. The diaries also improved communication within the family by ensuring that all family members had access to personal and medical information.
The families indicated that the diary was a tool of humanization of the ICU. The use of the diary by the staff to communicate with the patient indicated to the families that the staff members were compassionate and empathetic, thereby providing reassurance that the patient was safe and in good hands. Furthermore, the respect and compassion expressed by the staff generated hope in the family members. In an earlier study by our group  staff members reported that writing in the diaries helped them ‘to humanize their roles by emphasising the dimension of sensitivity and empathy in their interactions with the patient and the family’. In addition, awareness that the staff viewed the patient as a living human being humanised the patient in the eyes of the families. A critical illness not only causes fear that the patient might die, but also induces distress due to a perception that the patient has lost some of his or her humanity. Seen in the unfamiliar and somewhat frightening ICU environment, connected to machines, and often unable to communicate, the patient is not easily recognised by the family as their loved one, they know so well. The ability of the diary to restore the patient's humanity in the eyes of the family illustrates the differences between, and complementarity of, care and treatment. For family members who are made vulnerable by the critical illness of their relative, the diary serves as a powerful tool for improving holistic family-centred care.
Some methodological aspects are important to discuss. To take into account the possible role for subjectivity inherent in qualitative analyses, we used an insider-outsider approach, with three people, of whom two did not belong to the ICU staff and usually worked outside the ICU setting. The use of theoretical sampling with the inclusion of new interviewees in an approach that goes back and forth between the data and the analysis allows the uncovering of a theory . The participation of both family members and all ICU staff members in the diaries, the specific instructions given to diary writers, and the inclusion of medical information in the diaries may limit the general applicability of our findings. The high educational level of our sample may limit the general applicability of our results. Finally, we did not take family dynamics into account.
This study produced important insights about the usefulness of ICU diaries to families. The diary served as a vector that connected the patient, family, and staff into a single coherent story. It contributed to support the family members in the ICU and to restore the functional and social role of the family. The medical information given by physicians in the diary was greatly appreciated by the families, who felt it improved their comprehension. Physician participation in ICU diaries probably deserves to be encouraged.
We thank all the families who participated in the study and the staff members of our ICU for their participation. We thank A. Wolfe, MD, for helping to prepare this manuscript; and Malika Talbi, who contributed to perform the interviews. We also thank Claire Launay, Yasminka Pichon and Adrien Pichon, who transcribed the interviews.
No other contribution. Conceived and designed the experiments: MGO AP BM. Performed the experiments: MGO. Analyzed the data: MGO AP PM. Contributed reagents/materials/analysis tools: MGO CB FP AM BM CG SB. Wrote the paper: MGO AP PM.
- 1. Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, et al. (2005) Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med 171: 987–994.
- 2. Berwick DM, Kotagal M (2004) Restricted visiting hours in ICUs: time to change. JAMA 292: 736–737.
- 3. Giannini A, Miccinesi G, Leoncino S (2008) Visiting policies in Italian intensive care units: a nationwide survey. Intensive Care Medicine 34: 1256–1262.
- 4. Azoulay E, Chevret S, Leleu G, Pochard F, Barboteu M, et al. (2000) Half the families of intensive care unit patients experience inadequate communication with physicians. Crit Care Med 28: 3044–3049.
- 5. Azoulay E, Pochard F, Chevret S, Adrie C, Annane D, et al. (2004) Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units. Crit Care Med 32: 1832–1838.
- 6. Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, et al. (2007) Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004–2005. Critical Care Medicine 35: 605–622.
- 7. McAdam JL, Fontaine DK, White DB, Dracup KA, Puntillo KA (2012) Psychological symptoms of family members of high-risk intensive care unit patients. American Journal of Critical Care: an official publication, American Association of Critical-Care Nurses 21: 386–393; quiz 394.
- 8. Garrouste-Orgeas M, Philippart F, Timsit JF, Diaw F, Willems V, et al. (2008) Perceptions of a 24-hour visiting policy in the intensive care unit. Critical Care Medicine 36: 30–35.
- 9. Giannini A, Marchesi T, Miccinesi G (2011) Andante moderato: signs of change in visiting policies for Italian ICUs. Intensive Care Medicine 37: 1890.
- 10. Giannini A, Garrouste-Orgeas M, Latour JM (2014) What's new in ICU visiting policies: can we continue to keep the doors closed? Intensive Care Medicine 40: 730–733.
- 11. Garrouste-Orgeas M, Willems V, Timsit JF, Diaw F, Brochon S, et al. (2010) Opinions of families, staff, and patients about family participation in care in intensive care units. J Crit Care 25: 634–640.
- 12. Garrouste-Orgeas M, Coquet I, Perier A, Timsit JF, Pochard F, et al. (2012) Impact of an intensive care unit diary on psychological distress in patients and relatives. Critical Care Medicine 40: 2033–2040.
- 13. Egerod I, Christensen D, Schwartz-Nielsen KH, Agard AS (2011) Constructing the illness narrative: a grounded theory exploring patients' and relatives' use of intensive care diaries. Critical Care Medicine 39: 1922–1928.
- 14. Kloos JA, Daly BJ (2008) Effect of a Family-Maintained Progress Journal on anxiety of families of critically ill patients. Crit Care Nurs Q 31: 96–107; quiz 108–109.
- 15. Egerod I, Bagger C (2010) Patients' experiences of intensive care diaries–a focus group study. Intensive Critical Care Nursing: the Official Journal of the British Association of Critical Care Nurses 26: 278–287.
- 16. Hale M, Parfitt L, Rich T (2010) How diaries can improve the experience of intensive care patients. Nursing Management 17: 14–18.
- 17. Jones C, Backman C, Capuzzo M, Egerod I, Flaatten H, et al. (2010) Intensive care diaries reduce new onset post traumatic stress disorder following critical illness: a randomised, controlled trial. Critical Care 14: R168.
- 18. Knowles RE, Tarrier N (2009) Evaluation of the effect of prospective patient diaries on emotional well-being in intensive care unit survivors: a randomized controlled trial. Crit Care Med 37: 184–191.
- 19. Aitken LM, Rattray J, Hull A, Kenardy JA, Le Brocque R, et al. (2013) The use of diaries in psychological recovery from intensive care. Critical Care 17: 253.
- 20. Hodge B (2013) The use of symptom diaries in outpatient care. Fam Pract Manag 20: 24–28.
- 21. Jones C, Backman C, Griffiths RD (2012) Intensive care diaries and relatives' symptoms of posttraumatic stress disorder after critical illness: a pilot study. American Journal of Critical Care: an Official Publication, American Association of Critical-Care Nurses 21: 172–176.
- 22. Ewens B, Chapman R, Tulloch A, Hendricks JM (2014) ICU survivors' utilisation of diaries post discharge: a qualitative descriptive study. Aust Crit Care 27: 28–35.
- 23. Roulin MJ, Hurst S, Spirig R (2007) Diaries written for ICU patients. Qual Health Res 17: 893–901.
- 24. Di Gangi S, Naretto G, Cravero N, Livigni S (2013) A narrative-based study on communication by family members in intensive care unit. J Crit Care 28: 483–489.
- 25. Charmaz K (1990) ‘Discovering’ chronic illness: using grounded theory. Soc Sci Med 30: 1161–1172.
- 26. Strauss AL, Corbin JM (1998) Basics of Qualitative Research. Grounded Theory Procedures and Techniques. 2nd ed. London: Sage Publications.
- 27. Perier A, Revah-Levy A, Bruel C, Cousin N, Angeli S, et al. (2013) Phenomenologic analysis of healthcare worker perceptions of intensive care unit diaries. Critical Care 17: R13.
- 28. Coyne I (1996) Sampling in qualitative research. Purposeful and theoritical sampling: merging or clear boundaries? Journal of Advanced Nursing 26: 623–630.
- 29. Le Gall JR, Lemeshow S, Saulnier F (1993) A new Simplified Acute Physiology Score (SAPS II) based on a European/North American multicenter study. JAMA 270: 2957–2963.
- 30. Creswell J (2009) Research design: qualitative, quantitative, and mixed methods approaches. Thousand Oaks, California: Sage Publications.
- 31. Mehlhorn J, Freytag A, Schmidt K, Brunkhorst FM, Graf J, et al. (2014) Rehabilitation interventions for postintensive care syndrome: a systematic review. Crit Care Med 42: 1263–1271.
- 32. Urizzi F, Correa A (2007) Relatives' experience of intensive care: the other side of hospitalization. Rev Latino Am Enfermagem 15: 598–604.
- 33. Molter NC (1979) Needs of relatives of critically ill patients: a descriptive study. Heart Lung 8: 332–339.
- 34. Dodek P, Heyland D, Cook D, Rocket G, Kutsogiannis D, et al. (2012) The relationship between organizational culture and family satisfaction in critical care. Crit Care Med. 40: 1506–1512.
- 35. Stephenson PL (2006) Before the teaching begins: Managing patient anxiety prior to providing education. Clin J Oncol Nurs 10: 241–245.
- 36. Egerod I, Schwartz-Nielsen KH, Hansen GM, Laerkner E (2007) The extent and application of patient diaries in Danish ICUs in 2006. Nursing in Critical Care 12: 159–167.