Families experience high levels of stress during a loved one’s critical illness.
To provide an overview of current evidence on the use of journal writing as a coping mechanism for family members during a loved one’s critical illness in a neonatal, pediatric, or adult intensive care unit.
Five databases (MEDLINE, PsycINFO, CINAHL, APA PsycArticles, and Health Source: Nursing/Academic Edition) were searched to identify studies examining the benefits of journal writing for family members of critically ill patients. Eight eligible studies reported data from 426 relatives of critically ill patients.
Regarding quality assessment, the quantitative studies met 73.1% of relevant quality criteria, whereas qualitative studies met 81.3%. Mixed-methods studies met 82.4% of quantitative and 55% of qualitative criteria. Various key themes were identified: communication and understanding, connection to the patient, emotional expression, creating something meaningful, and the importance of pictures and staff entries. Overall, writing in a diary seems to be beneficial for reducing psychological distress and posttraumatic stress disorder, but none of the studies found that it significantly decreased anxiety or depression.
The findings of this review suggest that having family members of critically ill patients write in a diary is a simple and cost-effective intervention that may improve their psychological outcomes. Critical care nurses are in a position to educate families about the potential benefits of writing in a diary. Future research would be valuable regarding the benefits of using a diary and an optimal approach for doing so in this population.
Medical advances and technologies have vastly improved patient care and enhanced intensive care capabilities over the past 3 decades. An intensive care unit (ICU) can be a busy and frightening place for families, and family members of critically ill patients can experience substantial stress, anxiety, and depression, and posttraumatic stress disorder (PTSD)1,2 during the patient’s hospitalization and after their discharge. These conditions may reduce quality of life and lead to social isolation, marital problems, unemployment, and long-term health problems.3
Intensive care units are a component of modern health care, and the demand for intensive care continues to grow. From 2006 to 2010, the number of critical care beds in the United States increased 15%, from 67 579 to 77 809.4 According to the Society of Critical Care Medicine,4 5.8 million patients are admitted to an ICU each year in the United States. Recent estimates suggest that hospitals nationwide house 1500 neonatal ICUs (NICUs) with approximately 20 000 beds, 400 pediatric ICUs (PICUs) with 4044 beds, and 5686 adult ICUs with 77 809 beds.5 Prematurity and very low birth weight (< 1500 g) account for 90% of admissions to NICUs. Approximately half of pediatric patients admitted to a PICU have a chronic condition; the most common diagnosis at admission is respiratory illness, followed by trauma, postsurgical care, infection, and fluid and electrolyte derangements. Cardiac, respiratory, and neurological conditions are common among patients in adult ICUs.4
Anxiety, stress, and depression are common emotions when a family member, regardless of their age, is in an ICU. In a systematic review, Roque et al6 found that parents of patients in a NICU experience feelings of guilt and shame, a high level of stress, and mood and anxiety symptoms. The prevalence of acute stress disorder in such parents is between 24% and 35%.7 In one study, 33% of fathers and 9% of mothers of patients in a NICU met the criteria for PTSD.8 Similarly, parents of children in a PICU report extreme anxiety, high stress, and PTSD.9,10 Finally, relatives of adults in an ICU also experience substantial psychological distress, including symptoms of generalized anxiety disorder, depression, panic disorder, PTSD, and complicated grief.11,12
Several interventions such as support groups, verbal and written information, and open visitation effectively decrease stress among family members.13 Such interventions, however, usually require extensive resources that families often are not able to access.
Although people have been writing in diaries for centuries, the therapeutic potential of journaling was not recognized until the 1960s, when Dr Ira Progoff, a psychologist who studied under Carl Gustav Jung, discovered that his clients who recorded their emotions, anxieties, and fears were able to work through their emotions or situations much more quickly than those who did not write in a journal.14 Progoff began to offer workshops on the use of what he called the “intensive journal method.”14,15 Although this method has been applied extensively in practice, only recently have researchers documented the physiological and psychological outcomes if its use. In their seminal 1986 study, Pennebaker and Beall16 were the first to document the benefits of expressive writing on physical health. Since then, more than 400 studies have demonstrated the benefits of such writing in a variety of populations.17 Research also supports the use of diaries to help patients in ICUs Most related studies indicate that ICU diaries provide a coherent narrative of the patient’s ICU stay, clarifying gaps in memory and reducing the impact of patients’ imagined occurrences and hallucinations.18 Research suggests that writing in a diary reduces patients’ anxiety and depression,19 and their PTSD, after discharge.20 Less, however, is known about the effects of writing in a diary on family members of critically ill patients. Therefore, the purpose of this integrative review is to describe whether family members obtain any benefits from writing in a diary during a loved one’s critical illness.
Diaries provide a coherent narrative of the patient’s ICU stay, clarifying gaps in memory and reducing the impact of patients’ imagined occurrences and hallucinations.
In this integrative review, we answer 2 research questions: (1) Does writing in a diary improve psychological outcomes for family caregivers of critically ill patients in an ICU? and (2) What are the benefits of writing in a diary for relatives of critically ill patients in an ICU?
We chose to perform an integrative review because it is the only method that allows the simultaneous inclusion of both experimental and nonexperimental research, which can help provide a fuller understanding of the phenomenon of concern. It also may play a larger role in evidence-based nursing practice.21 We searched 5 databases (MEDLINE, PsycINFO, CINAHL, APA PsycArticles, and Health Source: Nursing/Academic Edition) using the following keywords individually and in various combinations: journal writing, journaling, diary, stress, coping, PICU, NICU, ICU, critical care, intensive care unit, families, relatives, parents, spouse, mother, and father. To identify other works of relevance, we used WorldCat Local to manually search for the references listed in the retrieved papers. The Figure illustrates the search process. We used methods from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses to guide this review.
We included peer-reviewed research articles related to the impact of diary writing on family members of critically ill patients.
Our searches were limited to English-language articles published after January 2000. We reviewed all articles that examined outcomes for family members who actively wrote in a diary, and we excluded those whose primary purpose was to evaluate the impact of nurse-written journals or patient-written diaries, and those in which family members were not instructed or encouraged to write. We also excluded dissertations, commentaries, abstracts, and conference abstracts.
Diaries allowed family members to share information with each other, and rereading entries helped them assimilate and assess information, thereby improving the coherence of the ICU stay and filling in gaps in memories.
Data Extraction, Appraisal, and Analysis
One author (H.N.) accessed the articles and extracted particular information from each: the study’s purpose and design, the sample and setting, a description of the intervention, measurement tools, outcomes examined, and key findings. Both authors reviewed the articles. We assessed the quality of each article using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields.22 Qualitative studies could receive a maximal score of 20 (2 points for each of the 10 assessment criteria), whereas quantitative studies could receive a maximal score of 28 (2 points for each of the 14 assessment criteria). We assessed mixed-methods studies using both the qualitative and the quantitative criteria. Studies received a total score that varied depending on the relevance of each criterion to the particular study. We assessed and scored each study separately, and through discussion we achieved consensus regarding study quality. After determining quality, we analyzed the content of each study, guided by methods described by Dixon-Woods et al,23 to examine the extracted data for themes relevant to the questions of interest.
By searching the various databases, we initially identified 95 articles, 33 of which were duplicate records. For the 62 remaining papers, we screened the abstracts and full text to assess their eligibility, after which we excluded 55 articles, leaving 7 eligible articles. The manual searches of the articles’ bibliographies and reference lists identified 1 additional study for possible inclusion, and thus 8 studies were eligible for inclusion in this review (Figure).24-31 Five of the studies examined relatives of patients in ICUs,25,27-30 1 examined parents of critically ill pediatric patients in a PICU,31 1 examined mothers of infants in a NICU,26 and 1 examined relatives of patients undergoing coronary artery bypass graft surgery in a cardiothoracic ICU.24 All studies were published between 2001 and 2018. Two studies were conducted in the United States,24,26 2 in France,25,28 1 in Sweden and the United Kingdom,27 1 in Sweden,29 and 2 in Denmark.30,31
The studies included in this review represent the journal-writing experiences of 426 relatives of critically ill patients. These studies applied 3 study designs: a quantitative design,26,27 a qualitative design,28-31 or a mixed-methods design.24,25 Our evaluation of study quality, for which we used the Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields, 22 indicated that, on average, the quantitative studies met 73.1% of the relevant criteria, whereas the qualitative studies met 81.3%. Mixed-methods studies met, on average, 82.4% of quantitative and 55% of qualitative criteria.
Although the researchers investigated family responses to writing in a diary, the outcome variables (dependent measures) differed among most studies. Three studies specifically investigated symptoms of posttraumatic stress and used either the Post-Traumatic Stress Symptoms-14 or the Impact of Events Scale-Revised questionnaire.25-27 One study examined psychological distress using the Symptom Checklist-90-Revised.26 In 1 study, authors investigated family member anxiety using the State-Trait Anxiety Inventory scale,24 and in another study, investigators examined anxiety and depression using the Hospital Anxiety and Depression Scale.25 In 4 studies,28-31 researchers investigated family members’ general experiences with writing and reading an ICU diary. The Table reports study variables, instruments, and key findings from each of the included articles.
Anxiety, Depression, Psychological Distress, and PTSD
Neither of the 2 studies that used anxiety as an outcome variable found a statistically significant decrease in anxiety among family members between the control and intervention groups.24,25 Kloos and Daly24 reported that anxiety decreased significantly (P < .001) over time among family members in both the control and the intervention groups; however, they found no statistically significant difference (P = .76) in the level of that reduction between the 2 groups. Similarly, Garrouste-Orgeas et al25 investigated anxiety as well as depression (theirs was the only study to investigate depressive symptoms); they did not find any statistically significant improvement in anxiety (P = .51) or depression (P = .23) 3 months after the diary intervention.
All 3 of the quantitative studies that included PTSD as a dependent variable demonstrated a statistically significant reduction in posttraumatic stress symptoms after the diary intervention.25-27 Barry and Singer26 examined psychological distress and reported statistically significantly less psychological distress (P < .001) 4 weeks after journaling and lower traumatic stress (P < .001) among those in the intervention group. In relatives of adult patients in an ICU, Garrouste-Orgeas et al25 found a statistically significant decrease in PTSD-related symptoms (P < .001) for the intervention group 12 months after discharge from the ICU. Jones et al27 reported no significant improvement in PTSD symptoms (P = .79) 1 month after the intervention; they did, however, find a statistically significant decrease in PTSD-related symptoms (P = .03) between 1 and 3 months after the intervention. By contrast, they noted a statistically significant increase in PTSD symptoms (P = .03) between 1 and 3 months in the nonintervention group.
Including photographs of the family particularly helped relatives feel more present at the patient’s bedside; such photographs stood as a symbol for maintaining a relationship with the patient.
Communication and Understanding
Four studies reported that using a diary aided in communicating and understanding information.28-31 The diary allowed family members to share information with each other, and rereading entries helped them assimilate and assess information, thereby improving the coherence of the ICU stay and filling in gaps in memories. Garrouste-Orgeas et al28 reported that a powerful characteristic of the diary was that it allowed family members to read entries as often as and whenever they wished, helping them to assimilate information at their own pace. Johansson et al29 and Nielsen and Angel30 found that being exposed to and reflecting on information written in the diary gave family members deeper understanding and knowledge of the situation. In the chaos and incoherence of the ICU stay, the diary entries helped family members separate information about events and fill in gaps in their memories.31
Connection to the Patient
Three studies emphasized that the diary allowed family members to connect with the patient.28,29,31 Garrouste-Orgeas et al28 and Johansson et al29 found that writing in the diary led family members to engage in an intimate inner dialogue with the patient; through the diary they spoke to the patient as if the patient were awake. One participant stated that “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.”28 The diary was a symbol for maintaining a relationship with the patient, even when relatives could not physically be at the bedside.29 In addition, Mikkelsen31 reported that diary entries provided information that helped relatives start important but difficult conversations about the ICU experience with patients after their discharge.
Two of the studies noted that families viewed using a diary as something meaningful they could do during a time of apprehension.29,30 Nielsen and Angel30 reported that the activity of writing in a diary allowed relatives to feel useful and contribute something valuable while alleviating feelings of uncertainty. Johansson et al29 also emphasized that in the unfamiliar environment of the ICU, the diary made relatives feel that they were doing something worthwhile and were being included in the patient’s care. One participant stated, “You felt that here you are sitting, and [you] cannot do anything…. So I thought [the diary] was good; it felt like you had a little [stress] task.”29
Three of the studies reported that the diary allowed family members to express their emotions in writing.28-30 Garrouste-Orgeas et al28 and Nielsen and Angel30 found that through the diary, family members could identify and unload their intimate and powerful feelings of dread, anxiety, and fear surrounding the situation, as well as feelings of love and affection for the patient. One participant stated, “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.”28 Johansson et al29 also emphasized how the diary allowed some participants to put into words strong emotions that can be difficult to express; others, however, thought the diary was too public to express their thoughts, and they stopped writing for fear of exposing their feelings. Alternatively, Mikkelsen31 reported that reading the diary was an emotional challenge for some participants, as it evoked repressed emotions from the ICU experience.
Importance of Staff Entries
Three studies reported the importance of diary entries by nurses and staff to family members. Garrouste-Orgeas et al28 and Johansson et al29 described how such contributions to the diary allowed families to connect with staff and gave a sense that “we were all in this together.” In addition, family members believed that entries by staff humanized them, allowing the family to see their emotions and how much they care for their patients. Garrouste-Orgeas et al28 also reported that at a time when family members find it difficult to recognize their loved one and see them as “alive,” supportive staff entries and well-wishes for the patient helped humanize the patient and helped the family maintain hope. Factual entries from staff were also important, providing a different perspective and an accurate recollection of the situation for family members.29,31
Importance of Pictures
Mikkelsen31 and Johansson et al29 reported the importance of including photos in the diary to add information that is difficult to describe with words. Mikkelsen emphasized that including pictures of the patient was most helpful in providing participants with a further understanding of the situation. Johansson et al found that including photographs of the family particularly helped relatives feel more present at the patient’s bedside; such photographs stood as a symbol for maintaining a relationship with the patient.
Only two studies reported any potentially negative outcomes from a diary intervention in an ICU.29,31 Johansson et al29 found that because the diary indicated family member visitation patterns, it created feelings of guilt when visits were infrequent and stress when family members did not know what to write. Therefore, family members sometimes felt feelings of failure and insufficiency when they were unable to write in the diary. As previously mentioned, Mikkelsen31 reported concern that some participants found reading the diary to be an emotional challenge because it evoked repressed emotions from the ICU experience.
Overall, research suggests that providing a diary to families of patients in an ICU is a simple and cost-effective intervention that may improve psychological outcomes for families after their loved one’s intensive care. All of the studies that included PTSD as a dependent variable demonstrated a statistically significant reduction in posttraumatic stress symptoms after the diary intervention. The one study that included psycho-logical distress as a dependent variable also found a significant decrease among family members after using a diary.26 None of the studies, however, found that anxiety or depression was significantly reduced. Garrouste-Orgeas et al25 suggest that psychological recovery requires time, and the benefits of a using a diary may occur via a delayed mechanism for various conditions.
The findings of this review align with previous research indicating that expressive writing in a diary can produce substantial improvement in psychological well-being and reduce stress.32,33 Writing in a diary may allow family members to create a story that expresses their emotions and builds a meaningful account of the stressful event, thereby helping them cope more effectively.34 Writing in a diary also allowed family members to connect with the patient and participate in something meaningful during a time of apprehension.
Families wrote in private (only the family member had access) or public (all family members and staff caring for the patient had access) diaries. Although family members from both groups experienced positive psycho-logical outcomes, each approach resulted in different benefits and potential limitations. Families who used the private diaries were able to write about feelings and emotions that remained confidential, and thus they possibly benefitted from the emotional release that Pen-nebaker32 and Lepore and Smyth33 suggest. Symptoms related to PTSD also decreased among families who used a public diary, and this may have been related to a reduction in factors that cause stress to family members of patients in an ICU, such as poor communication and lack of support from staff, poor comprehension of medical information, and fear.35,36 For those writing in a private diary, with little involvement of staff, the benefits of communicating information and connection between family members and staff may not have occurred in the same way. Some family members, however, may find it difficult to fully express their personal emotions in a public diary for fear of exposing their feelings.29
Although the privacy of an ICU diary may be important to some family members, themes identified in this review indicate that public diaries may achieve additional benefits that counteract stress.
All of the studies in this review used different approaches to the diary intervention, and only 1 study provided clear instructions for the families writing in a diary. According to Pennebaker,37 a person should write continuously, without concern for spelling or grammar, for a minimum of 15 minutes at least 3 days per week to achieve the greatest benefit. Broad leeway on the topic should be allowed, but one should be encouraged to write about what is bothering them. Pennebaker also recommends that one’s writing be kept private and not shared with a group. Although the privacy of an ICU diary may be important to some family members, themes identified in this review indicate that public diaries may achieve additional benefits that counteract stress. Both approaches may have positive outcomes, but research suggests that the stress-reducing benefits of expressive writing may be limited to an individual’s unique coping patterns.17,38 Some evidence demonstrates that expressive writing may not be beneficial for those who are less able to express emotions, and such individuals should not use it.17 This evidence supports the idea that when used as a coping strategy in certain contexts, expressive writing in a diary is most beneficial when it is consistent with a person’s natural coping tendency.17
Limitations and Strengths
The lack of research evidence limits this integrative review, as do methodological issues. We found several inconsistencies in how outcome variables were operationalized and in how the diary intervention was implemented. The studies included in this review had different approaches for the diary, most of which were not completely clear, as only 1 study gave specific instructions for writing. For example, some studies encouraged family members to write, whereas others offered them a journal but the health care team wrote most of the entries. In addition, some family members could write freely, with little guidance about what to write, whereas others were required to write for a certain amount of time and were asked to write specifically about their feelings and emotions. This review is, to our knowledge, the first to examine the evidence to determine the effects of writing in a diary on relatives of a critically ill patient. Although this review was based on a heterogeneous sample, the studies we evaluated consistently reported a decrease in PTSD symptoms, supporting the notion that writing in a diary may improve psychological outcomes across populations.
Providing access to a journal for family members of patients in an ICU is considered a standard of care in many European hospitals.39-42 Findings of this review support this standard, but despite the increasing amount of empirical evidence confirming the benefits of such an intervention, it has yet to become common practice in American hospitals. A diary is a simple and cost-effective intervention that critical care nurses can offer to families.26 Nurses can educate families about the potential benefits of writing and give them directions on how to start. More formal programs in which the hospital provides the diary and directions for families as a standard of care can also be implemented. After a patient’s ICU stay, their family members can experience extensive stress, anxiety, depression, and PTSD, leading to potential long-term health problems.1,2 The Nursing Code of Ethics calls all nurses to commit to preventing illness and to promoting and restoring health, and to work toward creating innovative approaches that reduce health disparities.43 Critical care nurses are in a key position to provide an individualized diary intervention that may reduce adverse physiological outcomes and promote health among family members of patients in ICUs.
To purchase electronic or print reprints, contact the American Association of Critical-Care Nurses, 27071 Aliso Creek Rd, Aliso Viejo, CA 92656. Phone, (800) 899-1712 or (949) 362-2050 (ext 532); fax, (949) 362-2049; email, email@example.com.
To learn more about ICU diaries, read “Measuring Outcomes of an Intensive Care Unit Family Diary Program” by Huynh et al in AACN Advanced Critical Care, 2017;28(2):179-190. Available at www.aacnacconline.org.