Journal of Critical Care (2013) 28, 483489

A narrative-based study on communication by family

members in intensive care unit,,
Stefania Di Gangi PhD , Giuseppe Naretto Dr, Nicole Cravero, Sergio Livigni Dr
Department of Anesthesiology and Resuscitation, San Giovanni Bosco Hospital, Turin, Italy

Keywords:
Abstract
Narrative-based medicine;
Purpose: This study investigates how informative stories are, as written by patients' families in an
Patient/family-centered
intensive care unit (ICU) guest book, in terms of families' emotional responses, needs, perceptions, and
care;
satisfaction with the quality of care supplied.
Intensive care medicine;
Materials and Methods: Design was retrospective observational. Spontaneously written stories (440),
Cluster analysis
gathered between 2009 and 2011, described experiences of 332 family members and 258 patients.
Multivariate information from stories was analyzed using cluster analysis.
Results: Most frequently, stories were written in the form of letters addressed to patients (38%, 168
stories). Family members wrote mainly to give encouragement and to motivate patients to live (34%,
150 stories), expressing love or affection (56%, 245 stories). Feedback to ICU staff was provided in 65
stories, and competence was the most relevant skill recognized (31%, 20 stories). Cluster analysis
highlighted links between positive feedback and families' positive emotional responses.
Conclusions: The study suggests that ICU guest books can be an effective and simple means of
communication between the family, the patient, and the ICU staff. Families shared thoughts, feelings, or
opinions, which were meant to be supportive for the patients or rewarding for the staff.
2013 Elsevier Inc. All rights reserved.

Authors' contributions: SDG analyzed the data and drafted the
manuscript. GN supported the study, participated in data collection, and
contributed to the drafting of the manuscript. NC participated in data collection
and data management and reviewed the manuscript. SL contributed to the
drafting and revision of the manuscript for important intellectual content. All
authors read and approved the final version of the manuscript. SDG takes
responsibility for the integrity of the work as a whole.
Institution where work performed: Department of Anesthesiology
and Resuscitation, San Giovanni Bosco Hospital, Turin, Italy.
Conflicts of interest: All the authors confirm that they have no
conflicts of interest, in any form, in relation to this work.
Corresponding author. S.C. Anestesia e Rianimazione, Ospedale
Giovanni Bosco, Piazza Donatore di Sangue 3, 10154 Torino, Italy.
E-mail address: stefania.digangi@tiscali.it (S. Di Gangi).
1. Introduction
Intensive care unit (ICU) diaries are ongoing records of
patients' stay in the ICU, which are kept by a third party and
often accompanied by pictures [13]. Intensive care unit
diaries have shown to help patients to remember and under-
stand their experience in the ICU [1,2]. They have been used
as a therapeutic tool for psychosocial recovering of patients
and following up after discharge [4,5], but they have also
been considered as an integral part of the patient's care [6].
Though diaries are usually written by nurses [15], par-
ticipation of patients' families in diary keeping should be
encouraged [6]. Diaries may improve communication between

0883-9441/$ see front matter 2013 Elsevier Inc. All rights reserved.
http://dx.doi.org/10.1016/j.jcrc.2012.11.001
484
patients, who are usually unable to speak for themselves, and
their families [1,4,6]. It has been shown that writing diaries
helps families to share their experience, feelings, and presence
with the patients [7]. Moreover, participation of families in
writing patients' diaries enables patient/family-centered care
[1], whose definition requires patients' family members to be
involved in clinical decision making and care [8].
On the other hand, effects of family interactions in the
ICU are mainly influenced by ICU staff [811]. It has been
shown that good communication and collaboration between
patients' family members and ICU staff help to improve the
quality of care supplied [8,1216]. A collaborative relation-
ship, between families and ICU staff, requires ICU staff to
understand and meet families' needs [8], which have been
the focus of several studies [10,12,1720]. To the best of our
knowledge, family diaries have not yet been used as a means
to learn about family members' needs, perceptions, or satis-
faction with the work of ICU staff.
This study focuses on an ICU guest book, whose narratives
can be seen as coming from a collection of diaries written by
families or patients' visitors. We aim to investigate how in-
formative stories are, as read from the guest book, in terms of
family members' emotional responses, needs, perceptions,
and satisfaction with the quality of care supplied.
2. Materials and methods
We undertook a retrospective observational study based on
a collection of unstructured stories written by patients' visitors.
The study was carried out in the ICU of Ospedale
Giovanni Bosco, Torino, Italy, as a part of an ongoing project,
named H.story (http://www.hstory.it), whose aim is to
promote narrative-based medicine in health care.
We focused on stories, as collected in the ICU guest book,
from July 2009 to December 2011. These stories were
written spontaneously by individuals (relatives, friends, or
acquaintances) who visited the patients in the ICU. We
referred to them as family members. All persons were
informed that their private accounts might have been used for
research purposes, and their written informed consent was
requested before writing in the guest book.
Participation of all family members was voluntary but
encouraged actively throughout the duration of the study.
We allowed narrators the freedom to decide about the
contents and information provided to encourage openness
and to have a better understanding of what was relevant to
them. They were also allowed to structure the writing any
way they wished or to express their feelings using art form
(drawings, songs, poetry, and so on). All stories were hand-
written in the Italian language.
Analysis of stories was focused on answering the fol-
lowing questions:
Contents. What did stories say about family members?
Purpose. Why were they written?
S. Di Gangi et al.
Form. How were they written?
Feedback to staff. Was feedback to ICU staff provided?
When possible, we abstracted from each story the fol-
lowing information:
- date and time;
- family member's name or alias, sex, and relationship
with the patient;
- patient's name or alias;
- emotional responses (hope, encouragement, and so on);
- main purpose of the story (catharsis or emotional
release, acknowledgement, and so on);
- expressive medium (drawing, poetry, and so on);
- narrative mode (second-person narrative referred to the
patient);
- medical history (including patient demographics);
- patient outcome (death, improvement, transferring to
the general ward);
- feedback to ICU staff (professionalism, humanity, and
so on).
The keywords, used for emotions, purposes, media, and
feedback, were determined reading the narratives and are
conceptual codes for similar groups rather than specific terms
used by narrators. In this context, we defined poetry as any
story that used imaginative language or metaphors. The
keyword coding was done by a single person.
2.1. Statistical analysis
Qualitative data analysis was combined with cluster
analysis techniques [21], which allowed visualization of
multivariate information from stories and hidden pattern
recognition.
A tag cloud [22] was used to visually represent the
keywords describing the contents of stories. More frequent
tags appeared darker and larger than the less frequent ones.
Hierarchical agglomerative cluster analysis [21] was used to
find groups (clusters) of homogeneous keywords. We started
with individual keywords as clusters and successively merged
them according to Ward's linkage rule [23]. We defined the
distance between 2 keywords to be inversely proportional to
the number of stories containing them. Moreover, we penalized
pairs in stories with many keywords through a weight that
decreased with the number of keywords. This was done to
highlight pairs of keywords appearing alone. Let a and b be 2
keywords, Ii(a,b) be an indicator that equals 1 if the ith story
contains a and b and 0 otherwise, and mi be the number of
keywords in the ith story. The distance between a and b, D(a,
b) was defined as follows:
h X i
Da; b exp i I i a; b=m i :
This distance was the similarity measure used in the
algorithm. A dendrogram, that is, a tree diagram, was used to
Study on communication by family members in ICU
plot the sequential merging of clusters based on the degree
of similarity.
Cluster analysis techniques were used for describing the
contents of stories both in terms of feelings and feedback
provided to staff.
All statistical analyses were performed using R. Word
Cloud 2.0 package (http://cran.r-project.org/web/packages/
wordcloud/index.html) was used to plot the tag cloud.
3. Results
A total of 440 stories, from July 2009 to December 2011,
were collected and analyzed. In this period, 612 patients
were admitted to the ICU, and we supposed stories referred
to the 398 patients that stayed in ICU more than 48 hours.
Sometimes the same patient was visited by more than 1
person, or the same person wrote more than once. In fact, we
counted 258 patients and 332 family members, although we
had some missing values in patient and family members'
names. The mean number of entries per patient was 1.71,
with standard deviation equal to 2.41.
We observed that 54 patients (28%) were female and 139
(72%) were male, with 65 missing values. We found an
opposite pattern in sex composition for family members: 118
(68%) were female and 56 (32%) male, with 158 missing
observations.
Regarding the familial relationship with the patient, we did
not show the complete distribution, but we found that 82
(42%) family members were children, 32 (17%) grand-
children, 17 (9%) nephews, 14 (7%) siblings, 10 (5%) parents,
and 9 (5%) spouses. The missing values were 139. Of the 258
patients, we learned from the stories that 14 (5%) died.
In 65 (15%) of the 440 stories, feedback to ICU staff
was provided by family members who judged caregivers'
skills. In addition, there were 7 (2%) of the 440 stories where
merely gratitude was expressed.
3.1. Contents of stories
Contents of stories were described, in terms of emotional
responses, by a total number of 1749 keywords, of which
46 were unique tags, that is, an average of 4 keywords
per story. The maximum number of keywords in a story
was 13.
Fig. 1 reports the tag cloud showing frequencies of tags as
percentages of the total number of stories (440). We observed
that love/affection was the most frequent tag (56%, 245
stories), followed by encouragement (40%, 176 stories) and
awaiting (33%, 147 stories). The tag support was used in
120 stories (27%). We used the tag acknowledgement or ap-
preciation when gratitude or appraisal was expressed toward
ICU staff, while the tag thanksgiving was used when the
expression of gratitude was to God or to the patient. We
noticed that acknowledgement or appreciation was more
485
Fig. 1 Tag cloud of emotional responses. Frequencies are shown
in parentheses as percentages of the total number of stories (440).
On average, each story was described by 4 keywords.
frequent than thanksgiving (15 against 8%, or 67 against
34 stories).
Regarding acceptance of patient's illness and stay in ICU,
we found that in 29 stories (7%) family members expressed
resentment and in 13 (3%) disbelief. We used the tag aw-
areness in 6 stories (1%) when family members stated that
their experience in the ICU made them aware of the essence
and the biological significance of life.
Fig. 2 reports a dendrogram showing how elements
merged together in clusters. The first pair to form a cluster
was love/affection and encouragement. In fact, very often,
we found messages where expressions of affection followed
encouragement, for example, Come on, you can do this. We
love you. Proceeding with the merging, the tag awaiting
joined the cluster. We chose to stop after having identified
the 8 clusters enclosed in dashed rectangles in Fig. 2 and
labeled as appropriate. We observed that acknowledgement
or appreciation toward ICU staff was in the same cluster as
wish, hope, contentment, and solidarity. Nevertheless, family
members expressed gratitude even in difficult situations. In
fact, we found that, in 8 stories (2%), family members
praised staff after patient's death.
3.2. Purpose of stories
To understand better family members' needs, we studied
the reasons or motivations that induced them to write.
Results are summarized in Fig. 3, which shows the
distribution of the main purpose of stories. Frequencies are
expressed as percentages of the total number of stories (440).
The main reason to write a story for a family member was
to encourage the patient or sometimes oneself (34%, 150
stories). Expressing good wish followed with 13% (56
stories) and then catharsis, or emotional release, with 12%
(53 stories).
486
Fig. 2 Cluster dendrogram of emotional responses. Final clusters are enclosed in dashed rectangles, and the first and last ones are labeled.
A number of stories were written to express gratitude
toward ICU staff or to thank God, respectively, 25 (6%) and
17 (4%). Another 2% (8 stories) were written to encourage
reflection on ICU experience and on life in general.
Moreover, 5 stories (1%) expressed solidarity with family
members of other patients.
3.3. Expressive form of stories
Stories were usually written in everyday language and
with simple sentence structure. Very often, we found errors
in spelling, grammar, or sentence structure. Almost all stories
(88%, 387) used a second-person narrative that referred to
the patient.
Fig. 3 Reasons to write a story. Frequencies are shown as per-
centages of the total number of stories (440). Only 1 motivation was
abstracted from each story.
S. Di Gangi et al.
Fig. 4 shows the distribution of expressive media used for
stories. We observed that, most frequently, stories were
written in the form of letters addressed to the patients (38%,
168 stories). Short messages were preferred in 158 stories
(36%), followed by narrative writings (13%, 58 stories).
Poetry was used in 17 stories (4%), and we would like to
quote some examples: You drive to my heart in a fast lane,
Life is a wheel that goes up, then down, then up again and
makes you appreciate the ride. Drawing was as frequently
used as poetry (4%, 18 stories).
3.4. Feedback to staff
We summarized the feedback provided to the ICU staff
using 34 unique keywords describing the skills attributed to
the staff. On average, 2 keywords per story were used, for a
total of 147 skills. The maximum number of keywords in a
story was 9.
Fig. 5 shows the skills of ICU staff, as judged by family
members, reporting percentages of the 65 stories in which
feedback was provided.
We observed that feedback to ICU staff was mostly
positive. Competence was praised in 20 stories (31%). Pa-
tient and family concern were revealed in 15 stories (23%),
and trustworthiness in 14 (22%).
In 10 stories (2%), family members wrote that caregivers
supplied heavenly care. In fact, physicians and nurses were
called angels on earth or blue and greenish angels,
referring to the color of the uniform they wore. These cases
were classified under the tag excellence.
Fig. 6 reports the cluster dendrogram. The first pair that
clustered together was trustworthiness and competence.
Study on communication by family members in ICU
Fig. 4 Expressive media used for stories. Frequencies are shown
as percentages of the total number of stories (440). Only 1 medium
was abstracted from each story.
Final clusters are enclosed in dashed rectangles and labeled
as appropriate. In particular, the cluster named Narrative
approach pointed out that humanity was close to excellence
and professionalism.
3.5. Qualitative analysis
Qualitative analysis gave us more insights into percep-
tions and needs of family members.
3.5.1. Perceptions of ICU
Family members perceived ICU stay as a nightmare, a
journey without destination, a dark vortex, a prison
where the only chance of escape is healing, or stressful ups
and downs where improvement is accompanied by worsen-
ing and where joy lives with fear. The ICU appeared more
frightening and unusual than the general ward. In fact, a
family member in a story referred to the general ward as
Fig. 5 Feedback to ICU staff. Frequencies are shown as
percentages of the number of stories (65) where feedback was
provided. On average, these stories were described by 2 skills.
487
normal rooms. A child expressed loss, desolation, and wait
in a picture of a child looking at an airplane in the sky near
his house.
With the expressions needle stabbed in the stomach and
the heart of lead, a family member expressed his suffering
in a metaphoric way that recalled patient's interventions. In
other cases, family members, for their support to the patients,
likened themselves to the light in the dark, stars in the
night, or the sun through clouds that come and go.
3.5.2. Communication with patients
Family members expressed their need to confide their
sorrows, regrets, or unexpressed feelings to the patient: I
fear I have no more chances to speak with you, but I hope
that one day you will read my message.
Some family members admitted it was difficult to express
their thoughts in spite of their willingness to write: I'd like
to tell you more, but I think I can't find the right words.
3.5.3. Interactions with the ICU staff
Three family members raised doubts about medicine in
general or felt impotent, writing There is no result of
clinical examination that can destroy hopes and Being a
mere mortal, I am not able to interfere with the Almighty.
Trustworthiness of staff helped family members to en-
courage themselves and the patients. In fact, very often,
family members reassured patients, writing Don't worry!
You are getting very good care. Meanwhile, we found that
distrust was accompanied by sense of impotence, fear, and
anxiety. A family member wrote: Family can only hope
that ICU staff does not make mistakes and that treats the
patient gently.
Family members expressed their need to be supported by
the staff. Some of them described their visit as an experience
of pain soothed by the help of the staff: The smile and the
kindness of the staff are a balm to the heart.
Unrestricted visiting policy in the ICU was very wel-
comed: Thank you for your openness, in every sense of
the word.
Some remarkable comments were particularly rewarding
for the staff: Wonderful people who give back the joy,
ICU staff leaves a mark in your heart that will change you
forever, ICU staff: the best I have ever known. They
should teach their skills to the other wards, and finally,
Always work like that.
4. Discussion
To our knowledge, this is the first study that used guest
book stories from patients' family members and combined
qualitative and quantitative research, analyzing information
from stories in a multivariate setting. We chose a guest book
because of its potential to encourage sharing thoughts and
leaving comments or greetings without revealing one's
488
Fig. 6 Cluster dendrogram of feedback to staff. Final clusters are enclosed in dashed rectangles and labeled when the number of their
elements was greater than two.
identity. In practice, it was not different from a collection of
family diaries.
Similarly to other studies [2,3], we aimed at exploring the
narrative content of diaries, but unlike them, we did not focus
on the narrative structure of each story. Moreover, differently
from [3], we did not analyze contents of the events leading
up to the patient's admission or information about the
outside world, such as family news, football scores, and so
on. This kind of information has shown to be useful for the
recovery of patients after discharge [5], but this was beyond
our purposes.
We focused on families, and we described their in-
teractions with the patients through their emotional responses
and feelings and their interactions with the ICU staff through
their feedback provided to them. We found that the main
feelings expressed to patients were love and affection (56%,
245 stories) and that families were satisfied and considered
very positively the work of the staff. Competence of staff
was in fact the main skill praised (31%, 20 stories).
We analyzed the purpose and narrative form of stories to
gain insights into the role of diaries for families and into
families' communication needs. The main reason to write a
story for a family member was to encourage the patient or
sometimes oneself (34%, 150 stories). This result is
consistent with the dual roles of the diary, supportive and
supported, highlighted in ref. [1]. We found that stories were
written, most frequently, in the form of letters addressed to
patients (38%, 168 stories). This is consistent with what was
found in ref. [1] about the use of the diary as a pretext for
communication or as an opening for a conversation.
Although our study was not intended to determine the
effect of the ICU guest book, but to understand the content
of its stories, our findings suggested that both patients'
S. Di Gangi et al.
families and ICU staff could benefit from these diaries.
Intensive care unit guest book was revealed as a means to
help families to communicate with nonspeaking patients.
On the other hand, staff could benefit from reading these
stories. For example, they might gain understanding of
patients, and, as a consequence, they might follow a more
clinical ethical decision making [24]. Moreover, they could
find reward, acknowledgement, or suggestion for improving
their work through feedback provided by families. As an
example, we found evidence that some families were fully
satisfied with the unrestricted visiting policy in our ICU and
with the support they received from the staff. These are in fact
2 of the relevant family needs already investigated in the
literature [8,11,12,17,25].
Cluster analysis on feedback to staff highlighted that
professionalism and excellence were linked to humanity.
This is in fact the foundation of the narrative-based approach
[26], which we would like to pursue.
4.1. Limitations
The analysis of data from stories presented some
difficulties. First, collection of data depended on the writing
skills of narrators and their willingness to share thoughts and
opinions. Moreover, negative judgments could have been
underestimated because of feelings of vulnerability or privacy.
Second, the content of stories was free and unstructured.
Narrators wrote what was important to them regardless of its
relevance to our research questions.
Furthermore, choice of tags and analysis of con-
tents of stories, in addition to statistical skills, required em-
pathy to identify emotional responses and motivations for
Study on communication by family members in ICU
writing. This was meant to bridge the divide between
researchers and study participants with a humane approach
to data analysis.
However, the effects of subjective interpretation could be
reduced using machine learning and artificial intelligence
algorithms [27] that allow a computer search and an
automatic classification of the rough contents of stories.
Further research could aim both to stratify analysis, by
relationship to patients or by sex, and to investigate better the
links between narrators' feelings and feedback to staff.
5. Conclusions
With this study, we proposed methods to explore contents
from ICU guest books. We would like to encourage research
through family diaries in ICUs because its information may
stimulate ICU-level quality improvement efforts. Moreover,
it would be helpful to understand if our findings may be
representative of the Italian context as a whole or even of
the context of other countries.
We investigated how written material in ICU guest books
could inform us about family members' emotional responses
to their loved one's critical illness, as well as their needs,
perceptions, and satisfaction with the quality of care. We
suggest that narrative stories can be an effective and simple
means of communication between the family, the patient,
and the ICU staff. Stories may or may not have positive
effects on family experiences or patient outcomes. If clini-
cians were to read stories, this may enhance their empathy
and understanding of the family perceptions and needs.
Reflecting on such stories could provide insights about ways
to improve clinical practice.
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