Feasibility and Perceptions of Pediatric Intensive Care Unit Diaries

Abstract

Objective:

To determine the feasibility of implementing an intensive care unit (ICU) diary in the pediatric critical care setting and to understand the perceptions held by family members who receive the diaries after pediatric ICU (PICU) discharge.

Design:

Observational pilot study.

Setting:

PICU in a tertiary academic hospital in the United States.

Participants:

Critically ill pediatric patients admitted to the PICU and their families.

Interventions:

The addition of a PICU diary to a patient’s routine care.

Measurements and Main Results:

Twenty families of critically ill children admitted to the PICU were enrolled in the PICU diary pilot study between May 2017 and March 2018. Patients who had an anticipated length of stay of at least 3 days and whose families were English-speaking were included. The median age of patients was 6 years, ranging from newborns to 18 years of age, and the median length of stay was 11.5 days (IQR, 8.5–41). A total of 453 diary entries were written in 19 diaries over 433 PICU days, the majority of which were composed by bedsides nurses (63%). Follow-up surveys sent to parents 2 weeks after PICU discharge revealed that of the parents who had contributed to the diary, most enjoyed doing so (7/8). Nine of 12 parents had reviewed the diary at least once since discharge, and all parent respondents found the diary to be a beneficial aspect of their experience after PICU discharge.

Conclusions:

The use of ICU diaries in the PICU setting is feasible and perceived as beneficial by families of critically ill children. Future studies are needed to better understand if PICU diaries may objectively improve psychological outcomes of patients and family members after PICU admission.

INTRODUCTION

Post-intensive care syndrome (PICS), defined as “new or worsening impairments in physical, cognitive, or mental health status arising after critical illness and persisting beyond acute care hospitalization” (1), is an emerging area of focus in pediatric critical care (2, 3). Several studies have shown that psychological morbidities, including post-traumatic stress symptoms, occur in up to one-third of pediatric critical care survivors(4–6). Just as importantly, PICS-Family (PICS-F) recognizes that family members may also suffer from anxiety, depression, and post-traumatic stress after experiencing a relative’s intensive care unit (ICU) admission with a prevalence up to 69% in the first six months following an ICU admission (7, 8). These psychological morbidities may impact family members’ employment and relationships.(9) Close to half of all families may experience post-traumatic stress symptoms 12 months after discharge from the pediatric ICU (PICU), (10) with risk factors including female gender (11) and being an unmarried parent of a critically ill child. (12)

In adult critical care, ICU diaries have been shown to decrease anxiety and depression and reduce the incidence of new post-traumatic stress disorder (PTSD) in both patients and families(13–15). The goal of an ICU diary is to fill in memory gaps and provide a coherent description of what took place during a patient’s ICU admission (16). Diaries are generally written for ICU patients by healthcare staff, family members, and friends. The diary ideally contains daily entries on the patient’s condition and events of the day, and is given to the patient and family upon or after discharge from the ICU to help them reflect on their ICU experience at a time that is appropriate for them. Although patients and families may be able to access a patient’s medical information through accessible electronic medical records, these portals provide medical notes and raw data that are best understood by other medical providers. By contrast, ICU diaries can provide a personalized narrative intended for patients and families.

Despite the potential benefits of ICU diaries for patients and families, there is a paucity of information about the feasibility and adaptation of diary use to the pediatric critical care setting. A recent qualitative study of four families in the PICU found that diaries provided value to all family members as a catalyst for the coping process of the family unit (17). However, no data describe how PICU diaries are integrated into the daily activities of families and multidisciplinary staff. Substantial heterogeneity in ages, diagnoses, and length of stay may create challenges for systematic implementation of a diary program in the PICU. The objective of this observational pilot study was to assess feasibility and family perceptions of PICU diary use in a mixed population of critically ill PICU patients.

MATERIALS AND METHODS

Study Sample

All families of children with an anticipated length of stay of at least 3 days were eligible for enrollment. This inclusion criteria was chosen based on previous adult studies and the likelihood that there may be limited opportunity for diary entries among short-stay patients. Because all diary entries would be written in English, at least one English-speaking family member was required to be eligible for enrollment. The goal was to enroll families as soon as possible after their child’s admission to capture time periods of the highest acuity. The study protocol was approved by the Institutional Review Board (IRB) on human subjects research of the Johns Hopkins University School of Medicine. If the pediatric patient was of an age, developmental level and clinical status (i.e. not sedated) to provide assent, verbal assent was obtained to take photographs of the patient.

PICU Diary Development

After conducting a comprehensive review of the adult literature for common diary frameworks, we created a modified PICU diary template(18–20). Examples of modification were inclusion of all patients regardless of neurocognitive impairment, prior psychiatric illness, and visual impairments since the diaries could still be reviewed by family members. Additionally, the authors chose not to utilize standardized headings in diary entries but instead provided general guidelines to contributors for flexibility. Finally, diaries were given to families at discharge for reading and reflection at a time of their choosing. There was no follow-up by the clinical or research team as has been previously described in adult ICU diary studies. The process of creating the PICU diary framework and staff and family educational materials (see PICU Staff and Family Member Education) spanned two months. Feedback obtained from PICU staff during the initial education session was incorporated into the framework and process.

The PICU diary consisted of a 1-inch, 3-ring binder with a cover page and reinforced loose-leaf paper (See Figure, Supplemental Digital Content 1, which shows a blank sample of a PICU diary). The diaries were kept either in a patient’s room or immediately outside at the patient-specific nursing workstation.

PICU Staff and Family Member Education

Multidisciplinary PICU staff, including nurses, nurse practitioners, physicians (fellows and attendings), respiratory therapists, social workers, and physical, occupational and child life therapists, received education about the purpose of ICU diaries and how to contribute through writing and photography. Education of PICU staff included informational sessions, online education, a “fast facts” sheet, and real-time bedside review (See Figure, Supplemental Digital Content 2, which shows a PowerPoint presentation used to educate PICU staff about ICU diaries). After dissemination of educational resources, PICU staff were then asked to write daily entries about important clinical and social events. In addition, review of the PICU diary program was done in real-time with bedside nurses at time of enrollment and on selected days after a patient/family’s enrollment. Contributing to the diary was encouraged, but completely voluntary.

Given that all staff would be writing diary entries in the PICU setting for the first time, guidelines were created for diary contributors, including sample diary entries. The guidelines were kept in the front pocket of the diary (See Figure, Supplemental Digital Content 3). An emphasis was placed on avoiding the use of medical jargon and using everyday language in the diary entries. Of note, if the patient was enrolled any time after the day of admission, families and staff were asked to create diary entries for the previous day(s), if possible, to capture events they felt were important in the child’s course.

Family members were also encouraged to contribute to the patient’s diary. Parents were given a one-page sheet describing the purpose and potential benefit of ICU diaries during the initial enrollment conversation with a research team member (See Figure, Supplemental Digital Content 4). They were also invited to use the guidelines created for contributors if they desired.

PICU Diary Implementation and Follow-up

After informed consent was obtained from at least one legal guardian, team members, including bedside nurses and providers, were informed that a family had been enrolled in the PICU diary study. In addition, a sign was placed outside the patient’s room to alert multidisciplinary staff of the family’s participation in the study.

Families were given the option of including color photos in the diary taken during important moments of their child’s admission. A sticker of a camera was added to the front of the patient’s PICU diary binder to notify contributors that the family had consented to photos. Photos were taken with a dedicated PICU diary Polaroid Snap Instant Digital Camera (Polaroid, Model POLSP01R, Minnetonka, MN), which immediately printed out 2×3-inch photos. The photographs had an adhesive back, which facilitated easy insertion directly into the diary in real-time. To protect patient and family privacy, we kept no digital log of photos, ensuring that only one copy of a photo existed in a patient’s diary. The dedicated camera itself was stored in a secure location in the PICU between uses.

At PICU discharge, a member of the PICU diary research team met briefly with the family to answer any questions that may have arisen about the diary during admission and to remind the family that they would be receiving a follow-up survey. Upon transfer out of the PICU, the family could choose whether or not to keep the original diary. A copy of the diary was made for research purposes if the family chose to keep the original PICU diary. Additional data collection included patient demographics.

Two weeks after discharge from the PICU, families were sent a follow-up survey (electronic or mail per family preference) that could be filled out anonymously. The follow-up time point of two weeks after discharge was chosen based on the assumption that families would have had the opportunity to look at the PICU diary, if they so desired. The goal was to obtain a response from at least one parent. The survey, made up of a combination of multiple-choice and free-text questions, queried families about their perceptions of their PICU diary experience. The purpose was to gain a better understanding of how the PICU diary may or may not have helped family members (See Figure, Supplemental Digital Content 5, which shows the follow-up survey).

Data Analysis

Data were summarized as proportions for categorical variables and median and interquartile range for continuous variables. All quanitative data were collected and analyzed with the statistical software package STATA version 11.0 (StataCorp LP, College Station, TX). Qualitative data, including family reflections, were summarized descriptively. Thematic categories for diary entries were identified individually by two independent reviewers (BW and EH) and group consensus was utilized to determine final categories.

RESULTS

Twenty-one families, including a total of 21 mothers and 18 fathers, consented to have a PICU diary implemented as part of their child’s admission (95% consent rate) between May 2017 and March 2018. Only one family declined enrollment in the study because they had previously been given a personal journal by the child’s primary service (oncology) during the same hospital admission. One family who consented to the study did not have a diary initiated as their child died within 24 hours of enrollment. Ninety-five percent of families who agreed to participate in the study also consented to inclusion of photographs. One family who consented to the study opted not to have photographs taken because they were not sure how their child (an adolescent) would feel, given that they could not provide assent due to their condition. All families were enrolled by the fourth day of PICU admission, except for one family who was enrolled close to half way through the patient’s 60-day admission at the suggestion of the child psychiatry team, who thought the diary may be beneficial because of ongoing delirium. Diaries were at the bedsides of the 20 patients for a total of 441 PICU days. All but one family (95%) chose to take the original PICU diary home.

Patient Population

Demographic characteristics and admission diagnoses of PICU patients who received diaries are summarized in Table 1. PICU length of stay ranged from 3 to 75 days (median 11.5 days), and patient ages ranged from 0 days to 18 years (median 6 years). Twelve patients (60%) were transferred to a general pediatric care floor after PICU discharge, three (15%) were discharged to a rehabilitation facility, two (10%) were discharged home from the PICU, two (10%) died in the PICU, and one infant (5%) was transferred to the neonatal ICU.

Table 1.:

Patient and PICU Diary Characteristics

Patient No.	Age	Reason for Admission	Disposition	PICU Length of Stay (d)	PICU Day of Enrollmenta	No. Diary Entries	Eligible Days With No Entry (%)
1	Newborn	Congenital heart disease	Pediatric floor	15	2	20	8
2	6 mo	Congenital heart disease	Home	5	0	6	20
3	Newborn	Congenital heart disease	Pediatric floor	8	1	12	14
4	12 yr	Traumatic brain injury	Pediatric floor	12	2	17	10
5	Newborn	Congenital heart disease	Pediatric floor	10	0	8	20
6	11 yr	Cardiac dysfunction	Pediatric floor	7	1	11	0
7	Newborn	Congenital heart disease	Pediatric floor	42	2	48	28
8	17 yr	Renal transplant	Pediatric floor	3	1	3	0
9	Newborn	Respiratory failure	Neonatal ICU	11	1	22	0
10	12 yr	Orthopedic procedure	Pediatric floor	5	1	4	50
11	Newborn	Respiratory failure	Died	71	2	50	45
12	2 mo	Neurosurgical procedure	Pediatric floor	9	1	15	13
13	Newborn	Congenital heart disease	Pediatric floor	10	1	8	33
14	18 yr	Cardiac arrest/anoxic brain injury	Rehabilitation	60	4	48	55
15	7 yr	Neurointerventronal procedure	Floor, back to PICU, then home	10 (total)	3	11	0
16	16 yr	Heart failure	Pediatric floor	35	1	56	44
17	14 yr	Heart Failure	Rehabilitation	75	1	36	46
18	15 yr	Heart failure	Home	60	27b	53	70
19	5 yr	Cardiac arrest/anoxic brain injury	Rehabilitation	40	4	25	53
20	11 yr	Cardiac arrest	Died	12	4	Not availablec	Not availablec

^aPICU admission day = day 0.

^bPatient enrolled much later in PICU stay than usual at the suggestion of the pediatric psychiatry team to potentially help with delirium.

^cDiary was not copied prior to the family leaving the hospital.

Diary Content and Contributors

A total of 453 diary entries were made in 19 diaries during the study period. One diary was not copied by the research team out of consideration for the family, as the child had passed away and they had already stored the diary in their personal belongings. Most diary entries were made by bedside nurses (284/453; 63%) with the next most frequent contributors being parents (92/453; 20%). Figure 1 illustrates the proportion of diary entries from different groups. The most common types of diary entries included hospital events (36%), mention of specific visitors (28%), and supportive messages written by PICU staff and family (26%). Other themes that emerged included family expression of emotion (6%), patient expression of emotion (4%), and outside hospital events (0.7%). Ninety-five percent of diaries with consent for photos included them.

Figure 1.

Contributors to the PICU diaries are shown by percentage. MD, physician; PT/OT, physical therapist/occupational therapist; NP, nurse practitioner; RN, registered nurse; RT, respiratory therapist; SW, social worker; CCLS, certified child life specialist.

Only 4 of 19 diaries (21%) had at least one diary entry on each day the diary was at the bedside. Patients with a length of stay less than 30 days had a higher proportion of days with at least one diary entry (33%) compared to patients in the PICU longer than 30 days (0%). Diary entries in the long-stay group were more often summaries of events that occurred over days to weeks.

Family Impact Survey Results

Twelve of 20 families (60%; 9 mothers and 3 fathers) completed a PICU diary follow-up survey sent 2 weeks after PICU discharge. Four respondents had not made any diary entries, and the remaining respondents wrote anywhere from one to more than 10 entries. Of the eight parents who wrote in the diaries, seven enjoyed doing so and one felt neutral about contributing to the diary. At the time of survey completion, parents reported having looked at their diaries anywhere from zero to five times since their child had been discharged from the PICU. Three family members had not reviewed the diary at the time of survey response. Two family members made specific comments about the death of their child being the reason they had not yet looked at their PICU diary. All respondents felt the diary was beneficial. Table 2 includes free-text responses from parents regarding what they enjoyed about the PICU diary and what they felt could be improved. Multiple parents commented that they enjoyed having photos included as part of the diary and also found the diary to be a helpful tool in explaining to other family members what happened during the patient’s PICU admission. Suggested improvements included having more PICU staff write in the diaries and having an electronic version of the diary available.

Table 2.:

Free-Text Responses From Parent Follow-Up Survey Detailing Perceptions of PICU Diary Strengths and Areas for Improvement

Comment Category	Comments
Strengths	It was something to get my mind off of the fact that my daughter was sick. The most amazing part was when the photos/entries were recording my daughter’s progress.
	At the time, I didn’t like having everything recorded. But now I look back and like seeing how everything progressed.
	I love the photos!
	I think this was a wonderful outlet for a difficult time. I cannot wait to share the entries with my daughter when she is old enough. The PICU Diary is definitely special to us.
	I like that the diary is informal. You can either use it as a personal journal or use it to almost write letters for your child to read in the future to understand part of their past.
	I really enjoyed the idea of seeing his care through the diary.
	The diary was helpful for when my child got home and read all the positive thoughts and goals everyone had for him. It was a tear jerker but in a good way.
	So many critical events happened while being in the PICU that it is difficult and painful to record or read again. The diary is thoughtfully and positively written that the memories are captured yet easier to read. I am so happy I have a copy of the diary so I could share with my son.
	During the course of [my child’s] treatment it was a nice record of all the efforts of PICU staff to help our son.
	The inclusion of photos is especially helpful for us now that [my child] passed away. These are some of the only images we have of him.
	Inclusion of photos is the best part of the diary.
Areas for improvement	Just maybe reminding the staff to participate more in writing in the PICU diary.
	Make sure to start the diary immediately, not weeks into the stay.
	Pages for guests to sign on the days would be a nice reminder.
	The only change I would have made, was wish I would have asked more doctors and surgeons to contribute to the diary.
	I wish we would have thought to take a picture at discharge. We have plenty through her stay but did not take a picture on her last day. It would be fun to almost have a “before and after” comparison.
	It might be better if it were digital and could include videos?
	Would be nice to have a printer available for parents to print pictures from their phones. I took many pictures during my daughter’s 3 week PICU stay after her birth and would have used the diary as a baby book of this was available during that time.
	Include a resealable pouch to hold mementos (e.g., my daughter “made” me a Mother’s Day card that I am including in the diary).
	Offer an electronic version of the diary for those who prefer that option.
	Yes, maybe more involvement from staff. Like many nurses were involved in the process of my daughter’s health but only a few staff members wrote in it.
	Continued emphasis with the staff on inputting entries close in time to when the daily events occur (as opposed to days/weeks later).
Other	Unfortunately, my child passed during (their) stay in the PICU. I have been unable to bring myself to open the diary and read it yet.
	One parent commented that the diary had not yet been opened “as a result of our need to have some time between [my child’s] death and reviewing the diary–not because it isn’t worthwhile”.

DISCUSSION

In this pilot study, we found that implementation of ICU diaries in the pediatric critical care setting is feasible and beneficial for family members of critically ill children with a wide spectrum of ages and diagnoses. The high consent rate (95%) in this first study describing the process for introducing a PICU diary intervention suggests that this strategy of engagement is perceived positively by families during a highly stressful time. Original features of this study include a description of the implementation process involved in starting an ICU diary program in a pediatric critical care setting and a larger sample size than that of a recent study published describing the meaning of personal diaries to critically ill pediatric patients and their families (17).

ICU diary use in the adult critical care setting began in Scandinavian countries in the 1980s and then spread throughout Europe to help critically ill patients fill in memory gaps from ICU admission and create a coherent narrative of what occurred during admission (21–24). However, it is only recently that research groups have systematically studied the impact of ICU diaries on both critically ill patients and their family members. A 2015 Cochrane review found only three randomized control trials about the use of adult ICU diaries as a tool to improve patient and family recovery after critical illness(25). The authors ultimately concluded that the evidence was insufficient to comment on the benefits or harms of ICU diaries for patients and caregivers. One trial found that ICU diaries, which were given to a group of patients 1 month after discharge during a feedback session, significantly improved Hospital Anxiety and Depression Scale scores 2 months after discharge (20). A second trial showed that patients who were given a diary 1 month after ICU discharge had significantly lower rates of new onset PTSD at 3 months (13). The same research group later found that family members of patients who received their diary 1 month after ICU discharge had lower levels of symptoms related to PTSD at the 3-month follow-up than did the control family members (14). Although families were not formally tested for PTSD in our study, it has been previously shown that parents of critically ill children can experience symptoms of post-traumatic stress (26). Moreover, similar to adult studies, family members in our study found that keeping the PICU diary was beneficial(14, 27–30).

Not surprisingly, bedside nurses authored the majority of diary entries. Bedside nurses are in a unique position of observing and participating in every aspect of the patient’s care and can then summarize the events of the day or night. However, unlike the recently published qualitative PICU diary study, which had a purely nurse-driven diary program, diary entries in our study were also written by other multidisciplinary PICU staff members and family (17). A focused review of adult diary frameworks found that most diary projects allowed for a diverse group of authors(18).

We found that the majority of diaries did not have a diary entry on each day it was at the bedside and this number increased for patients with longer stays (admissions over 30 days). These findings suggest that the PICU diary was not fully integrated into staff’s daily workflow. Identifying a PICU diary advocate within each type of PICU staff and provider group may help improve participation. One study found that a major burden in diary writing was actual initiation of the diary; therefore they assigned multidisciplinary staff to initiate daily entries (13). This approach could be a helpful strategy for our PICU and others moving forward. Additionally, it is possible that inconsistent uptake of the diary intervention was partly due to its incorporation as a research study and not a full-scale unit-wide implementation. A systematic, multidisciplinary, unit-wide initiative may increase overall engagement and staff participation, as well as provide all families with the opportunity to potentially benefit from the intervention.

In our follow-up, most of the respondents were mothers. There is evidence that mothers and father may cope with the stress of having a sick child differently from one another(31). In future studies, it would be helpful to learn more from both mothers and fathers to better understand whether the use of a PICU diary is more or less helpful for mothers compared to fathers or if a PICU diary may help mothers and fathers cope by different mechanisms. Of note, two parents responded that the diary was beneficial, but had not yet been able to bring themselves to look at them because their children had died in the PICU. Thus, it is also important to consider what the most ideal timing is for family members to read their diaries after discharge. Reading the diary early after discharge could potentially cause distress, as can be the case for critically ill adult patients(32). Additionally, future research should explore methods of discussing the diary with families after discharge, which may best be integrated into a PICU follow-up clinic setting.

PICU diaries can also be useful as a tool for communication. The most recent study published on the use of diaries in pediatric critical care found that they provide language and explanations that parents may use or adapt to facilitate conversations with their child about the PICU experience (17). Moreover, the diary was important to and used by the family unit, including parents and siblings, as opposed to only the children who experienced a PICU admission. Similarly, multiple parents in our follow-up survey commented on using the diary as a way to communicate with others. Positive reflections of the diary included facilitating the challenging conversation of explaining to a sibling what the patient was experiencing. Another parent reflected that she wrote diary entries in the form of letters to her child, hoping that the child would one day have the opportunity to read it and better understand what had occurred during their past PICU admission.

Finally, the inclusion of photos in diaries, if consent was provided by parents, was positively received by families. The only other published report dedicated to the study of PICU diaries found that the use of pictures of patients in the PICU could be even more important than words in explaining events and the overall development of a child’s PICU admission (17). Photos are commonly incorporated into adult ICU diaries because they can help patients fill in memory gaps and deepen their understanding of their critical illness(14, 33, 34). Parents took personal photos in the aforementioned pediatric study and commented that they were grateful to staff who took photos during times when they might have been overwhelmed or lacking the mental energy to do it themselves. However, feedback from our follow-up survey indicated that some parents wished they could incorporate their own photos into the diary. To incorporate photos taken by family or friends, electronic diaries could be used to more easily facilitate the transfer of digital media. Electronic diaries have been explored by other research groups (35).

Limitations

This study had several limitations to consider. First, families were not approached in a consecutive manner. Rather, the data were collected from a convenience sample in a single academic pediatric hospital, which may limit the generalizability of our findings. Second, the sample size in this study was small, again affecting the generalizability. However, given the heterogeneous patient sample in terms of age and diagnosis, the reported outcomes may be of use to different types and models of PICUs interested in starting a diary program. Third, we did not systematically evaluate staff perceptions of PICU diaries as it related to workflow. However, the research team did receive verbal feedback from many nurses that it could be difficult to either find the time or remember to write diary entries during a very busy workday. One study found that the amount of time taken by nurses to write a diary entry made it feasible for implementation of a diary program (36). Fourth, we did not study the reactions of children to the diaries. Doing so would have been difficult for many of the patients who were either too young or neurologically impaired, but it will be important to consider the patients’ responses to their own PICU diary in future studies. Moreover, it will be helpful in the future to quantify any change in mental health morbidities in children and family members who receive PICU diaries by using validated screening tools to assess for symptoms of post-traumatic stress. Another limitation is the lack of information about family members’ literacy as a predictor of diary engagement and perceptions. Finally, the response rate to the follow-up survey was only 60%, and those parents who did respond may have perceived the PICU diary differently from those who did not respond.

CONCLUSION

The incorporation of an ICU diary in a pediatric critical care setting is feasible and perceived as beneficial by families of critically ill children. Future studies are needed to better understand if PICU diaries may objectively improve psychological outcomes of family members of critically ill children.

Supplementary Material

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Supplemental Digital Content 1. Sample of a PICU diary.

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Supplemental Digital Content 2. PowerPoint presentation created by the research team to educate PICU staff about ICU diaries.

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Supplemental Digital Content 3. Guidelines created for PICU diary contributors.

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Supplemental Digital Content 4. Informational sheet given to parents describing the purpose of ICU diaries.

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Supplemental Digital Content 5. Follow-up survey sent to parents 2 weeks after PICU discharge.