The Use and Usefulness of ICU Diaries to Support Family Members of Critically Ill Patients

Abstract

Purpose:

To analyze and describe the use and usefulness of the ICU diary to support family members of critically ill patients.

Materials and Methods:

A socio-technical systems model (SEIPS 2.0) guided data collection and analysis in this study aimed to gain a holistic understanding of factors that shape ICU diary processes and family requirements for support. Triangulated data sources, including interviews, observations, and photographs, were content analyzed for person, task, tool, and context attributes determining the use and usefulness of ICU diaries. Researchers recruited family members of critically ill patients admitted to ICUs in two hospitals (urban, rural) in the southeastern United States.

Results:

Nineteen female (100%) family members participated in this study. ICU diaries were used and adapted by family members to cope with the ICU experience in multiple ways. Results indicate that staff support, easy access, embedded instructional format, early initiation, and family ownership facilitated ICU diary use by family members. The ICU diary was useful as a medium to process emotions and gain insights, reduce stress, track information, and communicate with the staff and the patient.

Conclusions:

The ICU diary is useful to family members as a stress reduction, information management, and communication tool. The design of ICU diary implementations must address system factors to assure family members receive benefits from diary use. Further research to expand our understanding of the optimal structure, process, and content of ICU diary implementations is needed.

1. Introduction

Distress and anxiety, depression, and post-traumatic stress disorder (PTSD) symptoms are common in ICU patients and also their family members.[1] The sudden and unexpected admission, the complex and technical environment, and the uncertainty of death and loss exposes family members to stress and psychological consequences. Post-Intensive Care Syndrome-Family (PICS-F) refers to the mental health challenges experienced by family members of critically ill patients. PICS-F can be long-lasting, leading to chronic social, financial and health problems (e.g. social isolation, marital problems, unemployment, poor health).[1, 2] Research shows using an ICU diary can reduce symptoms of psychological distress in patients and family members. Psychological improvements in family members, however, are inconsistent across studies. A systematic review and meta-analysis indicate ICU diaries decrease symptoms of PTSD in family members,[3] while other reviews report no improvement.[4]

Researchers suggest the disparity in reported ICU diary effectiveness is due in part to the wide variation in ICU diary implementations. The format of the diary (structured, unstructured), who writes in the diary (staff, family, or both), and initiation criteria (all patients, criteria based) are examples of common variations in the structure, content, and process of ICU diary intervention. Hospitals base ICU diary implementations on the anecdotal experience of organizations, the assumptions of healthcare professionals, and usual practice.[5-8] There is a lack of evidence to guide the design of ICU diary interventions that maximally support the psychological needs of family members. As hospitals implement ICU diaries across the U.S., this lack of optimization will result in family members unsupported and wasted resources.

Hospitals need formative research to guide the design of ICU diary implementations to best support family coping and psychological recovery. To achieve this, they need a thorough understanding of the users (families), requirements for support (coping and recovery), and context of use (hospitals, homes). Most ICU diary research is non-theoretical, clinically driven, and lacks a whole-systems approach.

This study applies a sociotechnical systems framework adapted from the widely used Systems Engineering Initiative for Patient Safety (SEIPS) 2.0 model to guide data collection and analysis.[9, 10] Healthcare researchers commonly apply the SEIPS 2.0 model to focus on system factors that underlie the successful/unsuccessful performance of health-related activities by healthcare personnel, patients and family members. An interacting system of people, tools, tasks, and context shape ICU diary actions/processes that can be physical, cognitive, or social-behavioral. These activities/processes produce desirable (coping, recovery) or undesirable (anxiety, depression, PTSD) outcomes (See Figure 1). To maximally support families, institutions need an understanding of the system factors that determine actions/processes to achieve desired outcomes. This understanding applied to the design of the ICU diary intervention can optimize the potential to improve the coping and recovery of family members of ICU patients.

Figure 1.

Adapted Systems Engineering Initiative for Patient Safety (SEIPS) 2.0 model [9, 10].

The purpose of this study was to analyze and describe the use and usefulness of the ICU diary to support family members of critically ill patients. This information will identify opportunities to optimize the structure, content, and process of ICU diary interventions.

2. Materials and Methods

2.1. Design and Setting

The research team conducted this qualitative content analysis on data collected from August 2018 through April 2019 in two acute care hospitals in the southeastern United States. Data collection methods included: (a) semi-structured interviews of family members guided by the Family Interview Guide; (b) field observations of the ICU unit; and (c) photographs of ICU diaries (when permitted). A triangulation of data sources helped draw together distinct but complementary forms of data to support a comprehensive analysis on the use and usefulness of ICU diaries.[11] The Institutional Review Board at each institution approved the study.

Two PhD prepared nurse researchers with extensive experience using qualitative methods, collected data in three ICUs at two hospital sites. Site 1 is a Veterans Affairs tertiary hospital in a metropolitan area. Site 2 is a privately owned regional medical center in a rural community. Using diverse settings improves maximum variability and transferability of results. Hospital sites used home-grown ICU diary formats, processes, and interventional content. Table 1 describes the ICU diary characteristics at each site. Figure 2 is a photograph of the introduction and blank page format of the Site 1 ICU diary and Figure 3 is a photograph of an example entry page from the Site 2 ICU diary.

Table 1.

ICU Diary Characteristics at Site 1 and Site 2.

	Site 1	Site 2
Purpose	Benefit the patient	Benefit the family and patient
Initiation criteria	High risk for PICS (e.g., anticipated intubation >48 hours, pharmacologically sedated, delirium	All ICU patients
Primary Users	Staff, some family members Entries dependent on staff	Family members, some staff Entries dependent on family
Perceived Purpose	Benefits the patient	Benefits the family and the patient
Format	Unstructured, open	Structured, directive
Iterations	One diary	Could have multiple diaries
Portability	Not portable	Portable
Adaptability	Highly adaptable	Less adaptable
Ownership, control	Controlled by staff	Controlled by family
		members
Instructions	Verbal and diary text focused on purpose	Verbal and diary structure focused on purpose and use
Initial distribution of diary	Nurse	Unit Secretary

Figure 2.

ICU Diary format Site 1 (introduction blank entry pages).

Figure 3.

ICU Diary format Site 2.

2.2. Participants and Procedures

The study purposively sampled family members based on patient inclusion criteria: ICU stay > 48 hours, mechanical ventilation, and nursing judgment. The study defined family members as individuals who provide primary support, with whom the patient has a significant relationship, and someone who visited while the patient was in the ICU. Two researchers (SEP and RSM) approached eligible family members and provided a written information sheet about the study. After discussion, researchers obtained informed consent from interested family members, collected demographic data, and scheduled a semi-structured interview with the participant. The Family Interview Guide (see Appendix), an investigator-developed tool based on an extensive review of ICU diary literature, the SEIPS model, and the objectives of this study guided the audio-recorded 30-45-minute interviews. Prompts focused on person (patient, family, staff), task (ICU diary processes), tool (ICU diary structure), and context (hospital, home, social and physical environment) barriers and facilitators and concluded with the participant’s description of the real and potential useful diary attributes and the overall ICU diary experience. Researchers interviewed participants in a private area to ensure family member comfort and privacy. After the interview, with the participant’s permission, researchers photographed sections of the ICU diary chosen by the participant. Researchers observed visible diary process while in the ICU before or after interviews and recorded the observations in ongoing field notes. Site 1 conducted 8 interviews and site 2 conducted 11 interviews. Recruitment continued until ongoing analysis identified information redundancies indicating data saturation.

2.3. Analysis

Researchers analyzed data using content analysis with iterative category development method.[12] This method systematically derives trends, patterns, and themes from extensive amounts of textual data revealing the underlying meaning and allows for both deductive (concept-model driven) and inductive (data-driven) approaches to data analysis.[13]

After professional verbatim transcription of interview recordings, researchers cleaned the transcripts of identifying information and uploaded transcripts, field notes, and photographs into NVivo (version 12; QSR International Americas Inc., Burlington, USA) qualitative analysis software. The goal of the analysis was to identify and analyze ICU diary use including barriers and facilitators, and real and potential usefulness attributes of the ICU diary as perceived by the family members. The study defined use as the manner or method used by family members and the barriers and facilitators that constrained and enabled those ICU diary actions. The study defined usefulness as the benefit and value ascribed by family members to the ICU diary, including functional requirements. The SEIPS framework (i.e., person, task, tool, organization, social, and physical context) guided category development and identification of design recommendations for ICU diary implementations. For each category, we calculated the proportion of participants mentioning the category and the total number of references.

Using a stepwise, iterative, model-based analytic process, researchers identified broad use and usefulness categories followed by data-driven sub-category development and refinement. Three PhD-prepared nurse researchers (SEP, RSM, LMB) met regularly for coding discussions over a 6-month period during which RSM facilitated analytic agreement. Coding discussions between multiple coders are an evidence-based technique aimed to facilitate analytic conversion and concept development as opposed to measuring only agreement.[14, 15] During first pass analysis, researchers read through assigned transcripts to gain familiarity with the corpus of the data, followed by identifying large sections of text relating to the use or usefulness of the ICU diary and assigning high level model-based codes.[16] Next, the researchers discussed 3 transcripts and defined sub-categories iteratively. The researchers then coded assigned transcripts and discussed selected transcripts during subsequent coding meetings. After final category refinement, researchers re-coded transcripts to reflect the final code book. RSM recorded a detailed audit trail throughout the analysis process.

3. Results

Table 2 reports demographic characteristics of family participants, critically ill patients, and hospitalization information. Interview data revealed multifaceted factors that determined how family members of critically ill patients used the ICU diary and facilitators and constraints of diary use. The consequences of using the diary as perceived by family members was also reported. Factor sub-categories are presented with prevalence ratios and percentages with the number of specific references coded in parentheses. Reported quotes provide super-scripted family identifiers using an Age/Relationship to Patient /Site (i.e., 1 or 2) format. Table 3 summarizes result categories and subcategories.

Table 2.

Patient and Family Member Demographics

Patient	Site 1 n=8 (%) or median (IQR)	Site 2 n=8 (%) or median (IQR)
Age, median	67 (35,76)	66 (33, 87)
Gender, Male	8 (100)	5 (80)
Race
White	7 (86)	7 (86)
Black	1 (14)	0 (0)
Prefer not to say	0 (0)	1 (14)
Unknown	0 (0)	0 (0)
Marital status
Married	5 (63)	1 (10)
Divorced/Separated	3 (27)	4 (40)
Widowed	0 (0)	1 (10)
Single/never married	0 (0)	2 (20)
Unknown	0 (0)	0 (0)
ICU LOS (days)	15 (7, 29)	14 (7, 22)
Days ventilated	11 (4, 20)	12 (6, 20)
Diary initiation (days after ICU admission)	6 (2, 12)	2 (1, 3)
Diary days	8 (2, 16)	7 (2, 12)
Family	Site 1 n=8 (%) or median (IQR)	Site 2 n=11 (%) or median (IQR)
Age	58 (35, 80)	52 (31, 72)
Gender, Female	8 (100)	11 (100)
Relationship to patient
Spouse	4 (50)	2 (18)
Partner	1 (12)	1 (9)
Sister	1 (12)	1 (9)
Daughter	2 (25)	6 (54)
Mother	1 (12)	1(9)
Proportion of Entries
Family	4 (50)	9 (82)
Staff	6 (75)	1 (9)

IQR = interquartile range, ICU = Intensive Care Unit, LOS = length of stay

Table 3.

Summary of Factor Prevalence Described by Family Members Determining their Use of the ICU Diary

Factor Category	Total n=19 (%)
Person-Patient
Biomedical	10 (53)
Attitudes and Limitations	6 (32)
Person-Family
Knowledge and Experience	15 (78)
Availability	14 (74)
Relationship with the Patient	9 (47)
Person-Staff
Supportiveness	9 (47)
Task
Task Instructions	10 (53)
Task Difficulty, Ambiguity	10 (53)
Task Timing	9 (47)
Task Conflicts	8 (42)
Tool
Access and Availability	14 (74)
Usability	13 (68)
Completeness	8 (42)
Context (Organizational, Social, Physical)
Rules, Roles, Routines	11 (58)
Ownership, Control	9 (47)
Physical Environment	8 (42)
Concerns for Privacy	5 (26)
Family Relationships	4 (21)

3.1. Person Patient Factors Determining Use

Biomedical (10/19 [53%], 21 references). The patient’s medical condition, prognosis, and progress determined if and how family members used the diary. Some family members did not use the diary due to the critical nature of the patient’s illness (I was focused on other things while I was there. Like getting information about how he was doing, what was the plan… I didn’t want to sit there and ignore him just to write in the diary.^{62/sister/site 1}). Focusing on care of the patient was a priority (I was more involved with Mom, makin' sure everything was good, and not writin' down notes.^{45/daughter/site 2}). The medical condition of the patient also determined how family members used the diary. The daughter of a patient explained “…with someone who was not expected to come off the vent… I probably would've filled it out more on my personal thoughts and feelings.”^{33/daughter/site 2} Once the patient’s condition improved, writing in the diary became less important (I've written a lot less. Okay. … because he's now more active.^{45/partner/site 2}) and stopped if the family felt the diary was no longer necessary (Once I saw that he was kind of putting everything together on his own, that was just kind of a stopping point.^{48/daughter/site 1}).

Patient Attitudes and Limitations (32%, 9 references). Family members worried the patient would lack interest and not use the diary, limiting the family’s motivation to participate. Some felt the patient would not acknowledge memory loss (It kind of weirds him out that he lost track of time… he may not even read it, truthfully.^{33/daughter/site 2}), want to re-live the ICU experience (he doesn’t really want to think about being in the ICU.^{62/sister/site 1}), or accept the diary (He is not accepting of new things.^{65/wife/site 1}). One daughter questioned the diary’s benefit due to her father’s cognitive limitations (I mean he wasn’t a lot forgetful, but I think for somebody that maybe is a little younger, not in their 70s, they would be able to really bridge those things once they started looking back on that^{48/daughter/site 1}).

3.2. Person–Family Factors Determining Use

Knowledge and Experience (78%, 44 references). The family member’s knowledge and experience impacted use and content of the ICU diary. Their understanding of the purpose and primary beneficiary determined what information was prioritized in their entries (You know, I would've filled that part out but because this really wasn't for me, it was for my dad.^{33/daughter/site 2}). The majority of family members (53%) reported the diary benefited the patient (More or less just to write down stuff that had happened that my mom could remember it when she got up.^{31/daughter/site 2}). Others understood the diary benefited both the family and the patient (16%) (… it gives him back some time for those days that he's not gonna remember… it would help us to write down our feelings.^{65/mother/site 2}), or primarily benefited family members (37%) (... they said that it was for writing daily journals, writing doctor's names, times, things happen… write your thoughts or if you're upset, your emotions, your mental status.^{32/daughter/site 2}). Experience with journaling facilitated the acceptance of the ICU diary by family members (I always write stuff down, so it [diary] didn't bother me.^{54/wife/site 2}).

Availability (74%, 53 references). Some family members (42%) spent long periods of time in the hospital with the patient (I was there every day, all day.^{58/partner/site 1}). Continual family presence facilitated use of the ICU diary (We have lots of time in here.^{75/wife/site 2}). Other family members (32%) described barriers to spending time with the patient. Transportation was an issue (I had transportation to get down there for the first several weeks but then he [friend] couldn’t take me so I wasn’t there.^{82/mother/site 1}) especially for older adults (His mom don’t drive and all.^{58/partner/site 1}). Outside responsibilities limited available time to spend with the patient (I didn’t write in it as much as I would have liked to, I had limited time there because of my job.^{62/sister/site 1}).

Relationship with the Patient (47%, 11 references). The strength and quality of the relationship with the critically ill patient motivated family members to use the ICU diary (We live together. Do everything together… he's my world.^{45/partner/site 2}). Most described themselves as the patient’s primary caregiver (I am his sister and really his primary helper.^{62/sister/site 1}) and took the responsibility for diary entries as part of that role (I felt like it was kind of up to me to fill it out and everything.^{33/daughter/site 2}).

3.3. Person-Staff Factors Determining Use

Supportiveness (47%, 14 references). Some family members described the staff as supportive of diary use. Staff encouragement (21%) to use the ICU diary (… they said, ‘It's good. You'll be surprised how much better it'll make you feel.’^{35/wife/site 2}). Nurses would remind the family members to write in the dairy (The charge nurse would come around; they would let you know that the diary was up at the front.^{48/daughter/site 1}). Family members (37%) mentioned the active participation of staff writing in the diary (You would certainly think a doctor is way too busy to write anything down, but even some of the doctors had wrote little things.^{58/wife/site 1}) validated the importance of the diary and the care and concern of the staff (I don’t know how they have the time to do that because some of them would write a full page or a page and a half.^{58/wife/site 1}).

Family members also reported a lack of support from staff. Some (53%) received no encouragement (They haven't mentioned anything else about it to me.^{70/sister/site 2}). One wife at site 2 thought staff members were not comfortable writing in the diary (I had some people [staff] that they're just … they weren't comfortable doin' that.^{33/wife/site 2}). Family members at site 1 (26%) reported staff did not consistently write in the diary (I mean I wrote in it a couple of times, but the nurses didn’t write in it.^{32/daughter/site 1}).

3.4. Task Factors Determining Use

Task Instructions (53%, 36 references). Family members (47%) mentioned they received few instructions (They just handed it to me.^{45/daughter/site 2}) with the initiation of the diary. This made writing in the diary difficult as it was unclear what to write (It wasn’t really clear to me what kinds of things I should write.^{32/daughter/site 1}), or who should write in the diary ([Staff] didn’t make it clear that it was for the family members to write in too.^{58/wife/site 1}). Some family members felt they did not receive enough information about the diary’s purpose (I don't feel like it was explained to me… if you really want to push the diary, explain what it is and how it would benefit you to do that, you know, to write in it.^{75/wife/site 2}).

Task Difficulty, Ambiguity (53%, 25 references). Some family members reported difficulty knowing what to write. Some struggled to find the words to express feelings (It was trying to find the words that could explain.^{65/mother/site 2}). Others felt there was nothing to write about (He's just lying there so it's not like there's a lot of stuff going on…, trying to find anything to put in there.^{35/wife/site 2}). Family members developed strategies to overcome their writing difficulties. The wife of a patient wrote observations (I just write what I've seen. What I've seen going on and what I've been told.^{58/wife/site 1}). The partner of a patient focused on positive words (I adopted a few little phrases 'the rainbow comes after the storm'… anything positive.^{45/partner/site 2}). Staff entries gave family members examples (I think really having them write the first entry in there and then give it to you instead of just handing it to you blank.^{48/daughter/site 1}).

Task Timing (47%, 31 references). Timing of dairy tasks impacted the use and usefulness of the diary. Delayed initiation limited the diary’s usefulness since the content did not cover the entire ICU stay (… he wasn’t in the ICU very long after it was started. Just a few days so it didn’t have a lot in it.^{62/sister/site 1}). Some family members (26%) felt the ICU diary was incomplete due to the delayed initiation (… so many hours had gone by ^{58/wife/site 1}) and felt the delay reduced their use of the ICU diary (I haven't used it. I think it would've helped probably if I had it the first day.^{70/sister/site 2}).

Task Conflicts (42%, 40 references). Family members mentioned the priority of other tasks conflicted with diary use. Family members with little time could not prioritize diary entries (I really have a lot to do here today, and this is the last thing I need to be doing.^{48/daughter/site 1}).

3.5. Tool Factors Determining Use

Access and Availability (74%, 33 references). Writing in the diary depended on if the diary was easily accessible. Family members (42%) described the diary as available when needed (I've kept mine right with me in a little bag.^{65/mother/site 2}). Site 2 family members could carry the diary with them, while the site 1 diaries stayed on the unit. A consistent location (We just luckily had two tables outside our door, one on each side… they would just kind of leave it there.^{48/daughter/site 1}) and visibility (I put it in that holder so everybody sees it now.^{57/wife/site 1}) facilitated availability. Family members (32%) reported at times the diary was unavailable (I mean it wasn’t in the room and I didn’t want to ask for it.^{58/partner/site 1}). Site 2 diary was unavailable if left at home (I accidentally left it back there [home] last night.^{65/mother/site 2}) or in the possession of another family member (My mother has it.^{32/daughter/site 2}). Site 1 family members felt they could not easily access the diary located at the nurse’s station (You don’t feel comfortable walking up to the nurses' desk and picking up something. You think you're doing something wrong.^{58/wife/site 1}) and were hesitant to ask for the diary (I mean it wasn’t in the room and I didn’t want to ask for it.^{58/Partner/site 1}).

Usability (68%, 36 references). Some family members (47%) described the ICU diary as easy to use (It was very easy. Something that, I mean, it’s kind of is a no-brainer.^{48/daughter/site 1}). The site 2 diary structure facilitated use (It's pretty much tells, it says what to do.^{54/wife/site 2}) and decisions on what to write about (I mean, you didn't have to think of it all on your own… so, it was pretty easy to fill out.^{35/wife/site 2}). The structure of the site 2 diary was directive (…it was self-explanatory.^{33/daughter/site 2}; it gives you good outlines ^{35/wife/site 2}). A few family members described the site 1 ICU diary as difficult to use (21%) primarily due to the blank page structure of the ICU diary at site 1 (… it was kind of just blank pages to which was hard.^{32/daughter/site 1}). Family members described the importance of a hard surface to write on and suggested including a clipboard with the diary (if there was a clipboard in the room, something hard surface that you could write on. That would probably make it a little bit easier.^{31/daughter/site 2}).

Completeness (42%, 13 reference). Perceptions of completeness depended on if family members felt the amount of information was useful (It pretty much encompassed everything I could think of there, for a day. It's pretty comprehensive there.^{35/wife/site 2}). Feeling the diary was incomplete was due to a lack of entries (the diary didn’t have a lot in.^{32/daughter/site 1}), the short time the patient was in the ICU (So, it didn’t cover much time, it really didn’t.^{62/sister/site 1}) and delayed initiation previously discussed.

Tool Benefit/Usefulness. Table 4 describes the usefulness of using the diary as described by family members.

Table 4.

Family Member’s Description of the Usefulness of the ICU Diary

Benefits	Total n=19 (%)	Quotes
Family Well being
General	9 (47)	I'm assuming the purpose was just for, to kinda help make you feel better about the whole experience, so yeah…for me it helped.33/daughter/site 2
Emotional health
Outlet for feelings	12 (63)	It helped me… to put it on paper. It's like you take something throw it out and that's gone now let's go to something else. I liked it.31/daughter/ site 2
Reduce stress/anxiety	11 (58)	Relieved a little stress.54/wife/site 2 It showed they really cared when they took the time to write in it. It helped the stress.62/sister/ site1
Feeling productive	5 (26)	I felt like I was doing something productive.35/wife/site 2
Support for grieving	2 (11)	I think in our situation it was more useful after he had passed away… it was part of the healing process too.58/wife/ site 1
Sense-making
Tracking information	14 (74)	It’s a good way to remember everything that has been done so when he goes to his follow up, he would know exactly what was done… It did help having the journals where I could just jot down things, I wanted to ask the doctors when they came in, or even just to keep track of the doctors that came in and out. 'Cause he had so many um.45/partner/ site 2
Gaining Insights	8 (42)	It [writing in the diary] made me think about mv relationship with him.32/daughter/ site 1 And when I went back and read 'em, it helped me to put things in a better perspective.45/partner/ site 2
Communication
Between family/patient	11(68)	I wrote to him [the patient].54/wife/site 2 I'm writing down what she needs to know about what happened while she's here, why she's here because Lord knows she doesn't believe it's the smoking that put her here.31/daughter/ site 2
Between family/staff	9 (47)	It was nice for me to read the staff entries… I like the summary in the beginning, summing up what happened. That was nice to have that from the nurses. 62/sister/ site 1 … it helped me get answers that I need… there was you know a section of what to ask the doctors.35/wife//site 2
Between family/family	6 (32)	The night they took him off the ventilator… his son was there, and he got up and walked out of the room, and one of the nurses said he was out in the hall crying. I didn’t even know that.58/wife//site 1

3.6. Organizational, Social, and Physical Factors Determining Use

Rules, roles, routines (58%, 16 references). Hospital rules, staff roles, and schedule routines impacted diary use. Rules allowing only one person in the patient’s room discouraged others to write in the diary (It’s really hard when only one person can stay back here.^{75/wife/site 2}). The ICU diary champion role, one dedicated staff member to oversee initiation and use of the diary, improved use and sustainability. Shift routines determined the diary’s use by the staff. The wife of a patient described the night nurses did not always write in the diary (… at night I’m not here and I’d like to see what they have to say.^{57/wife site 1}).

Ownership and control (47%, 17 references). Perceived control and ownership of the diary encouraged engagement in the diary process. Staff control impeded diary use by family members but facilitated use by staff members (They feel like the staff owns it… They [family] don’t want to ask for it.^{57/wife/site 1}). Family member control facilitated family diary use (I’ve kept mine right with me in a little bag… They won’t share it, ‘cause I won’t let ‘em^{. 65/mother/site 2}).

Physical Environment (42%, 8 references). Family members described a quiet, private environment as the optimal conditions for writing in the diary (Usually it was in the evening. Um … after I had gotten him settled for the night.^{45/partner/site 2}). This environment was not always the patient’s room (I usually done mine out in the lobby or heart ICU waiting room… plenty of privacy.^{65/mother/site 2}).

Concerns for Privacy (26%, 15 references). Sharing the diary with staff and other family members impacted use. Family members described privacy concerns. Content of family entries were filtered (If I didn’t want them to see something, I just probably wouldn’t have written it there.^{48/daughter/site 1}). Some family members did not want staff (… I just didn’t want to write personal things and have them read it.^{58/Partner/site 1}) or other family members (I didn’t want his mother or sister to read anything I wrote.^{58/partner/site 1}) to read their entries. Some felt multiple iterations of the diary for family members (Um, my mother-in-law just uh, started one as well.^{35/wife/site 2}) and staff (You know, one for family, one for the nurses to keep at the station) enabled entries to be more personal (I just keep it for him … Just due to the nature of you know, the feelings in there.^{35/wife/site 2}).

Family Relationships (21%, 7 references). Complex relationships between family members determined who used the diary. Some were discouraged from writing in the diary. This applied to long time partners of patients who were not legally related (I’m not legally related. I didn’t write in the diary because I ain’t considered family.^{58/partner/site 1}). Family members expressed hostilities towards other family members (it helped me get out my frustrations because I am the only kid that ever shows up.^{31/daughter/site 2}). Close family relationships enabled sharing of one diary between family members (… we’re a close-knit family and, you know, we pretty much share everything.^{70/sister/site 2}).

4. Discussion

The ICU diary is a multifunctional tool that serves as a medium for family member to process, document, and communicate information and emotions during the ICU stay of a critically ill loved one. Distinct person, task, tool, and contextual system factors interacted to determine the diary’s use and usefulness. Several of these factors are noteworthy and give insights into the needs of family members for support and implications for design of ICU diary implementation.

Person Factors Determining Use–Distress and Support

Our results confirm during the initial days of a patient’s critical illness, family members keep vigil at the bedside and experience stress while processing their potential loss, an uncertain of the outcome, and an overload of information.[17, 18] Stress and resulting physiological response can alter the family member’s ability to “hear” and “process” information about the ICU diary. We found ICU staff support using verbal prompts throughout the ICU experience can re-enforce the diary’s benefits as a therapeutic and practical medium for family members to cope with the barrage of emotions and information. For family members, the diary is most useful during the critical times and less useful when the patient condition improves.

Task Factors Determining Use–Who, What, When

Lack of diary participation, ambiguous instructions, and delayed initiation constrained ICU diary use by family members. A diary with staff-only entries and no participation by family members was less useful to them as an informational or therapeutic tool. Family members that did not understand the purpose of the diary due to inadequate education by staff did not attain potential benefits for themselves or the patient. Delayed initiation resulted in diary’s that were incomplete and did not reflect the full ICU experience and families could not benefit from diary use during the stressful initial days of the patient’s admission.

Tool Factors Determining Use–Ease of Use and Adaptability

The ICU diary was only useful to family members if it was available, easy to use, and adaptable to their situational and personal needs. Participants at site 2 described the diary as easy to use because it “told you what to do” yet also commented on ways they adapted the diary for their own personal use. There is a tension between the need for structure and adaptability in ICU diary tool design. Providing for both is a future challenge.

Context Factors Determining Use–Privacy and Control

Physical environment, institution rules and roles, diary ownership and privacy were all key factors determining diary use and consistent with the frameworks for diary implementation in previous research.[19] The environment that best supports ICU diary use was a quiet, private setting without distractions. The family’s feeling of diary ownership encouraged participation and active engagement in the diary process.

Recommendations for the Design of ICU Diary Implementations

We identified several important considerations for the design of ICU diary implementations detailed in Table 5.

Table 5.

Requirements and Recommendations for Tool Design

Structure of the ICU Diary as a Tool
Privacy	Separate sections for family and staff journaling Consider separate diaries for individual family members and staff
Adaptability	Diary should be an open, binder-like system so family can add content Include unlimited blank pages for family to add photos, text messages
Usability	Provide a hard-back cover to support writing and entering information Organize page into structured sections to suggest topics for entries
Content and Functional Requirements
Information tracking	Include sections to document: Staff/provider names and specialty Date and time of visits by providers and friends Patient medical progress Tests performed
Emotional expression and processing	Provide unlimited blank pages for journaling about feelings Provide suggestive prompts for writing about feelings
Medical education	Include sections to: Basic medical equipment, ICU terminology Monitoring parameters
Communication	Include sections to document: Questions family members want to ask staff/providers Visitors words of support Patient likes/dislikes Personal patient information
ICU Diary Processes
Accessibility	Keep the diary in patient’s room with a pen attached. Provide designated area to store and secure the ICU diary.
Prompt Initiation	Initiate the diary at time of ICU admission
Instructions and support	Provide repeated instructions regarding the purpose and use of the diary to family members Encourage staff and family entries in the diary

The strengths of this study include a multi-site design reflecting maximum variability in ICU diary formats (structured, unstructured) and hospital environments (urban, rural). We sought the perspectives of family members that are users and beneficiaries of diary improvements. Limitations of the study include a small sample size of family members; however, our findings are consistent with scoping reviews of family ICU diary use. We feel the contribution of family member perceptions of ICU diary use and usefulness provides the most benefit to operationalization of the diaries to maximize benefit.

6. Conclusion

The inadequate understanding of the family member’s needs for psychological and informational support and system factors that facilitate and constrain ICU diary use impeded the effectiveness of the ICU diary to support coping and recovery. Our systems approach suggests the ICU diary has the potential to be a useful tool to support emotional coping, information management, and communication. Understanding family requirements for support (usefulness) and factors that shape successful use is necessary for the design of effective ICU diary implementations. More research is needed to further identify ICU diary functionality to support the coping and recovery of families and critically ill patients.

Highlights.

1. Research suggests ICU diary use can reduce distress in family members.

2. There is inadequate research and information on how to best structure diary use.

3. The SEIPS socio-technical systems model guided this study aimed to understand the requirements of the ICU diary to support family members and the constraints and enablers of diary use.

4. Interviews with 19 family members, unit observations, and diary photographs were content analyzed for person, task, tool, and contextual factors that impacted the use and usefulness of the ICU diary.

5. The ICU diary was useful as a coping, information management, and communication tool for family members of critically ill patients. Use constraints included privacy issues, lack of access and instruction, diary structure, and family relationships and availability.

Abbreviations:

ICU

Intensive Care Unit

Appendix

Family Interview Guide

INTERVIEWED BY ______________________ DATE __________ PLACE __________ TIME START __________ TIME FINISH __________ FAMILY # __________

• Introductions

  Hi there, thanks again for your time. My name is _____ and I am a _____.

  With me is ____, who is a _____.

• Study purpose

  The reason we wanted to interview you is we’re trying to learn about your experiences using the ICU diary and how we can improve the diary process from your perspective. We are here to learn from you. The interview and survey is voluntary, so it’s up to you if you want to participate.

• Study process

  The interview will go about 30 minutes and we’ll ask questions about your thoughts about using the ICU diary during your family member’s hospital stay and after discharge. We don’t put your name on anything so your answers are not traced back to you. When we write our reports, we put together everything we’ve learned from all the people we’re interviewing. Now, if you ever have any questions later on, this is my card.

  Do you have any questions at this time?

• Survey

  First, we are going to ask you some specific questions about your ICU experience [administer survey]

• TURN ON AUDIO and set the context: OK, we got that done. Now we are going to ask you more general questions. Remember, we’re looking to learn from you about your experiences with the ICU diary. There aren’t any wrong answers, just the plain truth, and we’re not here to tell you what to do or to report to your doctor.

1. (Name), first, tell us a little about yourself and your relationship with the patient.

2. What was it like to have a loved one in the ICU?    Probe Was this your first ICU experience?  Probe if they felt the experience was traumatic  If they had after effects  How they have coped with the experience

	TIME CHECK: Within 7 minutes from start?	□ Yes □ No (speed up!)
3. Let’s talk about the ICU diary. What did the doctors or nurses say the ICU diary was for…? {probe until satisfied}    Probe How did you feel about participating?    Did you think it accomplished that purpose?    How did you perceive your role?
4. Can you walk me through your diary experience? Beginning with when you first became aware of it.    Probe for when first learned about the ICU diary.    Did you get training? Was the instructional material adequate?    Writing in diary    Reading diary entries    Others who wrote in the diary    How did it feel to read or write in the diary?

5. What did you perceive as the difficulties using the diary? What made it easier?    Probe What did you think about the effort involved?    Was there a comfortable private place to sit, lighting, distance    Access to the diary and equipment needed    Reminders from staff, encouragement, feeling inhibited by staff    Was there a time when you wanted to use the diary but could not
6. How about the timings involved?    Probe When it was started, duration, when it ended    Timing of handover
	TIME CHECK: Within 15 minutes from start? (+8)	□Yes □No (speed up!)
7. Let’s talk about the diary itself… How did you feel about the information in the dairy?    Was the information complete? Was there information missing?    Probe for content, organization, steps, sequence    Photographs    Staff entries
8. What would you say was the most useful part of the diary for you? Least useful?    Probe what could be added to make it better
9. How did the diary impact you? How about others?
10. Tell me about how you felt about sharing the information that was in the diary.    When you were in the hospital, how did you feel about others reading the diary?    Was there a privacy concern?

11. [To patient] We’re coming to the end of our interview, so let me ask one more thing: how do you feel, overall, about your experience ICU experience and your experience with the ICU diary? Conclude and thank the participant