EMPIRICAL STUDIES
12454
Family members’ experiences with intensive care unit diaries
when the patient does not survive
Maria Johansson RN (Doctoral student)1,2,3, Ingrid W
ahlin RN, Med Dr (Research supervisor in Kalmar
County) , Lennart Magnusson PhD, RN (Supervisor) , Ingrid Runeson RN, PhD (Supervisor)2 and
1,3 2
Elizabeth Hanson PhD, RN (Professor)2,4
1
Intensive Care Department, County Hospital, Kalmar, Sweden, 2Department of Health and Caring Sciences, Linnaeus University, Kalmar,
Sweden, 3Research Section, Kalmar County Council, Kalmar, Sweden and 4School of Nursing & Midwifery, University of Sheffield,
Sheffield, UK
Scand J Caring Sci; 2017
Family members’ experiences with intensive care unit
diaries when the patient does not survive
Objective: The aim of the study was to explore how family
members experienced the use of a diary when a relative
does not survive the stay in the intensive care unit
(ICU).
Method: A qualitative method with a hermeneutic
approach was used. Nine participants who read/wrote
eight diaries in total were interviewed. The collected data
were analysed using a hermeneutic technique inspired
by Geanellos.
Findings: The analysis revealed an overall theme ‘the
diary was experienced as a bridge connecting the past
with the future’, which was a metaphor referring to the
temporal aspect where there was the period with
the diary up until the patient’s death and then the
Introduction
The intention of the intensive care unit (ICU) diary has
been to ‘fill in memory gaps’ and promote psychological
recovery among patients (1, 2). A detailed narrative of
the stay in the form of a diary might be a way to reduce
the postdischarge symptoms of post-traumatic stress dis-
order (PTSD), anxiety and depression (3, 4). Accordingly,
ICU diaries have been the subject of studies exploring
how they might help patients to reconstruct their memo-
ries and understand their time in the ICU. Hence, the
diary has been a useful tool in the debriefing process fol-
lowing intensive care (1, 5, 6). In particular, it serves as
an adjunct for the postdischarge follow-up visit to the
Correspondence to:
Maria Johansson, Intensive Care Department, County Hospital,
Lasarettsv€
agen, S-39185 Kalmar, Sweden.
E-mail: maria.kantarellgatan@telia.com
© 2017 Nordic College of Caring Science
doi: 10.1111/scs.
postbereavement period. The diary contributed to both a
rational and emotional understanding of the death of the
patient and disclosed glimmers of light that still existed
before the illness deteriorated. Further, the diary bridged
the space between family members themselves and
between family and nursing staff. It helped to maintain a
feeling of togetherness and engagement in the care of the
patient which family members found comforting.
Conclusion: Family members of nonsurvivors had a need
to have the ICU time explained and expressed. The diary
might work as a form of ‘survival kit’ to gain coherence
and understanding; to meet their needs during the hospi-
tal stay; and, finally, to act as a bereavement support by
processing the death of the patient.
Keywords: diaries, experiences, family members,
Gadamer, hermeneutics, intensive care unit, relatives.
Submitted 11 October 2016, Accepted 6 February 2017
ICU by providing a document of the events that occurred
during their stay, through which patients can reflect on
their ICU experiences (7, 8). Further, the diary is shown
to have a positive impact on patients’ health-related
quality of life (HRQoL) after a critical illness, and this
effect can remain for up to 3 years after hospital dis-
charge (9).
The diaries represent a collective caring activity
through which staff members share their knowledge.
Furthermore, the diaries are a platform for nursing per-
formance (10) and serve to humanise the caring process
(11, 12). As Egerod stated, the diary might ease social
interactions and work as a catalyst for developing rela-
tionships (11). However, admission to the ICU might be
a traumatic event for both the patient and his or her
family members (13). The literature shows that family
members can also benefit from writing and reading the
diary, even though the diary originally was intended for
the patient. The author team (14) argued that the diaries
1
2 M. Johansson et al.
meet the needs of family members in the ICU by relaying
understandable information and implying hope that the
outcome will be positive. Nielsen and Angel (15) simi-
larly stated that keeping a diary is a meaningful activity
that can create space for family members to cope with a
critical situation. Similarly, Garrouste-Orgeas et al. (16)
argued that a diary might play a significant role in
improving the well-being of family members of ICU
patients.
Overall feedback from patients and their family mem-
bers about the use of diaries has been positive (6). How-
ever, little is known about the family members of
nonsurvivors. A literature review highlighted only three
studies in the area. Bergbom et al. (5) included four rela-
tives of eight nonsurvivors, via use of a questionnaire
that consisted of five close-ended and two open-ended
questions. The family members of the deceased patient
expressed that the diary helped them to realise that the
patient was severely ill, acted as consolation, and con-
tributed to their ability to survive their sorrow. Combe
reported similar findings (6): four family members of
nonsurvivors stated that they were pleased to receive a
diary of the patients’ last stay and considered the diary as
a real memory and a source of comfort. Lastly, Backman
and Walther (1) revealed that the diary helped family
members to cope with their loss.
In summary, to the best of our knowledge, no qualita-
tive investigations have specifically investigated the expe-
riences of family members of nonsurvivors in depth.
Aim
This study explored how family members experience the
use of a diary when a relative does not survive his or her
stay in the ICU.
Methods
Design
A hermeneutic approach based on a Gadamerian
approach (17) was chosen to gain a deeper understand-
ing of how family members experienced a shared ICU
diary written during a relative’s stay and subsequent
death. Hermeneutics is both a philosophy of under-
standing and science of textual interpretation (18) that
aims to reveal conditions that facilitate understanding
(17). This study applied a Gadamerian hermeneutic
approach by combining the first author’s (MJ) own
pre-understanding with hermeneutic principles. The
principles of openness, the hermeneutic circle and an
attempt to achieve a new understanding by considering
the ‘otherness’ of the participants (i.e. the ‘fusion of
horizons’ metaphor for understanding an issue) were
considered (19).
Participants
‘Family members’ were defined as all relatives and friends
who visited the patients. Nine family members of eight
patients with diaries who did not survive his or her stay
participated in the study. All included family members
had read/written in the diary during the ICU time, and in
connection with the interview situation, four of nine fam-
ily members had read the diary after their loved one’s
death. They were recruited from across three ICUs (one
university and two county hospitals) in south Sweden.
The family members (five male and four female native
Swedes, aged between 19 and 70) shared their experi-
ences in an interview with the first author (see Table 1).
In two of the ICUs, a nurse routinely contacted all of
the deceased patients’ family members by phone within
2 months after the patient’s death. Family members were
asked whether they were interested in receiving informa-
tion about the study. Those family members who
expressed an interest were subsequently contacted by the
first author, who provided more detailed information. All
potential participants were informed that participation
was voluntary and that confidentiality was guaranteed. A
letter containing information was sent to potential partic-
ipants, indicating the possibility of answering via phone,
letter or e-mail if they wished to participate. A meeting
time and place was arranged to conduct an interview
with the interested individuals. On the day of the meet-
ing, information about the study as well as its aims and
data collection procedures were provided again. Diverse
sampling strategies were used in the third ICU in collabo-
ration with the ICU after-care team to recruit family
members. Eight eligible family members declined to par-
ticipate in the study. If the participants needed support
during or after the interview, then a nurse from the ICU
follow-up clinic was contacted.
Data collection
With participants’ permission, interviews were audio-
taped, lasted 45–90 minutes and were performed at par-
ticipants’ homes, their workplaces or a quiet room at the
hospital. The time between the death of the relative and
the interview ranged from 3 to 11 months. Before the
interview, the first author and participants had coffee
and discussed the deceased family member; the partici-
pants often cried. Afterwards, the conversation started
with the participant sharing their experiences with the
ICU diary. The initial question was ‘Please, tell me about
your experience with using an ICU diary during (family
members’ name) stay in the hospital’. An interview topic
prompt list was used if the conversation came to a halt
which included thoughts about the study, the application
of the diary and who was reading the diary after the
death. The interviews were transcribed verbatim.
© 2017 Nordic College of Caring Science

Table 1 Description of participants
Participant Gender Age Relation
1 Male 48 Son
2 Male 46 Husband
3 Male 19 Son
4 Female 70 Wife
5 Male 34 Son
6 Female 47 Daughter
7 Female 43 Daughter
8 Male 43 Husband
9 Female 25 Daughter
Data analysis
The interviews were analysed using the hermeneutic
technique inspired by Geanellos (20) which comprises
three levels of interpretation: reduction, integration and
aggregation. The interview data were read through sev-
eral times to acquire a sense of the whole; then, the text
was read for meaning units based on the study aims.
Simultaneously, the text was reduced from several thou-
sand words to several hundred meanings as the first level
of interpretation. The next step was to integrate frag-
ments with shared meanings and combine them into cat-
egories. The categories were divided into subthemes,
which were clustered under themes. The third level of
interpretation was aggregation, which entailed a simulta-
neous focus on the fragments, subthemes, themes and
the entire text. All information was used as a whole and
developed into an overall theme (20). Reflection was an
integral and ongoing process throughout interpretation,
and it aided the movement from parts to the whole and
back. Equally important was the movement from the
pre-understanding to understanding and back, which
illustrates the hermeneutic circle through which interpre-
tation occurs. Reflections regarding the analysis and the
first author’s pre-understanding were discussed with her
co-authors who are experienced in qualitative research.
The first author is currently a doctoral student in Caring
Sciences, has worked as an ICU nurse for many years
and is familiar with the use of the ICU diary.
Ethical considerations
The Regional Ethical Committee in Link€ oping, Sweden,
provided formal ethical approval for this study (Dnr
2012/415-31). All of the participants received written
and oral information about the study which included the
study purpose and procedures as well as listed partici-
pants’ right to withdraw at any time. The participants’
confidentiality was guaranteed. The interviewer and first
author is also an ICU nurse at one of the participating
clinics; however, none of the participants were under her
direct care.
© 2017 Nordic College of Caring Science
Experiences with ICU diaries 3
Patient illness Duration of ICU hospitalisation
Spinal cord kompression 61 days
Respiratory failure 32 days
Respiratory failure 32 days
Idiopathic pulmonary fibrosis 13 days
Endocarditis 70 days
Septicaemia 6 days
Heart disease 95 days
Septicaemia 28 days
Pancreatitis 9 days
Findings
A temporal dimension was an integral part of the analy-
sis. The interviews embraced family members’ experi-
ences that ranged from the moment the diary was
written up to the patient’s death and through to the sub-
sequent postbereavement period. Overall, the family
members experienced the diary as a bridge that con-
nected the past with the future. The bridge was sup-
ported by pillars of rational and emotional understanding
together with social interactions. The diary reflected ‘the
past’, ‘the present’ and ‘the future’ from participants’
points of view. However, the present was always con-
cerned with transitions in time, and the participants
experienced the present when they were reading or add-
ing an account to the diary. At the time of the inter-
views, four of the family members had read the diary
after the relative’s death, and five had not. Of the partici-
pants who had not read the diary, four said that they
would do so after more time had passed, but one would
not. All the family members planned to save the diary
for themselves or the next generation. The overall theme,
‘the diary was experienced as a bridge that connected the
past with the future’, was embodied by three themes and
six subthemes that are represented in Fig. 1.
The diary promoted a rational understanding
The participants experienced the diary as a reliable source
of information that was easy to understand and appropri-
ate. The notes in the diary captured the moments that
shaped the patient’s everyday life, which described the
knowledge and experience of both staff members and
participants.
The diary provided information
During the hospital stay, the diaries were accessible at all
times and were viewed as a complement to spoken medi-
cal information. However, the diaries also portrayed
social and environmental events. The diary was inter-
preted as a chronological ‘memory aid’ that provided
4 M. Johansson et al.

For instance, the diary communicated the sensitivity of

The diary provided
information the nursing staff to the patient by meeting his or her
The diary promoted a unique needs.
The diary as a bridge that connected

rational understanding The diary reflected the It is not only a patient lying there; they (the nursing
patient's everyday
staff) even found out what she really wanted (P8).
the past with the future

activities
The diary reflected
emotions
The diary promoted an
emotional understanding
The diary provided comfort
The diary maintained
communication
The diary promoted social
interactions
The diary maintained a
relationship
Figure 1 A thematic overview of how family members of
nonsurvivors experienced the ICU diary.
content and structure, facilitating an understanding that
enabled information to be passed on.
I was reading the diary to understand. It was an
appropriate way to present the information and to
assimilate things, I think (P2).
The diary started with a summary that included the
reason for ICU admission, followed by an ongoing narra-
tive regarding admission, and finally, the diary ended
due to the patient’s death. Often, an ending with the
time of death concluded the diary, followed by a final
saying such as ‘Rest in peace’. Sometimes, the cause of
death was provided (e.g. active withdrawal of life-sus-
taining treatment).
Whenever the participants read the diary, alone or
together with their families, they found information that
was overlooked in the previous reading. This finding
indicated how a repeated reading of the diary enabled
the participants to gain coherence and an understanding
of their ICU experiences.
The diary reflected the patients’ everyday activities
The everyday was dominated by the routines of the nurs-
ing staff, and the diary entries acknowledged small obser-
vations as well as provided insights into and control over
the hours that the participants were away.
I want to know what her life inside the hospital
looked like. Hopefully, she was not just staring
straight in front of her all day. I want to know if she
occupied herself with anything here or if she was
tired and slept all day. Yes, how her everyday life
inside the hospital looked like apart from the medi-
cal condition (P3).
The everyday routine might not only include insignifi-
cant details but also important events for the participants.
The participants used the diary to note moments which
they might otherwise have been unaware of, such as
wakefulness in the patient. Moments that were of impor-
tance provided knowledge about the whole, suggesting
that the patient was aware of the situation, and thus did
not have brain damage. The caring processes and patient
improvements were often portrayed. If these improve-
ments had not been written down, then they most likely
would have been merged with all of the other memories
of events. Therefore, a gleam of light was distinguished:
the last active remembrance of the time before the criti-
cally ill patient ultimately deteriorated.
The photos in the diary are very positive. . .. The
diary has in some way documented some of these
positive glimmers of light when things looked very
good. They were the last positive memories before
my father deteriorated (P5).
The diary helped to make the incomprehensible under-
standable because the inexplicable was expressed in
words and photographic imagery. The participants felt
that the staff cared for the patient and that s/he received
every chance to survive during the hospital stay. After
the patient had died, the diaries confirmed that the
patients received the best care possible.
The staff did their very best. They did all that was
humanly possible (P9).
The participants declared they were pleased with the
staff’s efforts and there were no manifestations of
displeasure.
The diary promoted an emotional understanding
The diaries conveyed many of the feelings expressed by
the participants, their families and nursing staff, thereby
enabling the participants to gain an emotional under-
standing of their experiences both during and after the
hospital stay. The diaries conveyed an unpronounced
feeling of strong hope when it appeared that the patient
might survive as well as a loss of hope after the death of
the patient.
The diary reflected emotions
Participants sometimes vented their desperation in the
diary and blamed themselves for not having observed the
symptoms of illness sooner. Therefore, the diary became
a form of confidant in which the participants asked for
forgiveness. They wrote down their feelings of guilt and
helplessness, which enabled them to unload their emo-
tions about the situation. Further, writing in the diary

© 2017 Nordic College of Caring Science


made it feasible for them to support the unconscious
patient because it was the only thing that they could do
while they were at the bedside.
Sometimes it was difficult to write in the diary, partic-
ularly when the critically ill patient deteriorated. Partici-
pants acknowledged that the nursing staff wrote less
under these circumstances, but they did not know how
they should act regarding diary writing. Participants
wanted to express strong feelings of love in the diary,
which perhaps would otherwise never have been spoken
and simultaneously assure the patient that s/he was not
alone in the situation. Several participants expressed dis-
appointed over the missed opportunity to express their
feelings of love in the diary because of their inability or
unfamiliarity with expressing their emotions. These par-
ticipants eased the distress of their inability to declare
their feelings through their frequent presence. For others,
the diary was considered as a feasible extension of them-
selves, in which they were able to write something that
they had never spoken.
To [verbalise my feelings] in a book like that. . . I do
not write quite so well, but I would have liked [to
express my feelings] to be there with pleasure (P5).
The participants realised that the patient was critically
ill and was approaching death; however, they wanted to
maintain hope until the end.
Then, you have the feeling that we have no more to
provide in that situation; then you felt that now we
will snuff it out, and it was not until then that you
gave up hope, that little spark of hope that you
hung on to (P5).
The hospital stay and ultimately the death of the
patient were compared to an existential journey: a pain-
ful journey into the interior of oneself. Some participants
admitted they avoided reading the diary because it could
represent a renewal of the misery experienced during the
last days of the patient’s life.
I will not as it looks just now, take it out and sit and
read the diary. . .. It is a repetition of what happened
(P8).
Others saw the diary as a real memory and a source of
comfort that helped them, which promoted well-being in
their future lives.
It is the last memory I have of my father. It is not a
good memory, but it is a memory I still have (P9).
The diary provided comfort
During the hospital stay, the diary was perceived as a
meaningful activity to which to devote one’s time,
instead of just staring at the monitors. In some ways, the
diaries were experienced as ‘an escape from the patient’
when the visits were emotionally laden. The diary might
allow the participant to momentarily escape reality, while
the patient was given a chance to rest and gather
© 2017 Nordic College of Caring Science
Experiences with ICU diaries 5
strength. After the patient had died, the diary was per-
ceived as ‘a good thing to have’.
In some way, not one of us has looked in the diary,
but we have talked about it several times, and some-
how it feels pretty nice to have (P7).
The diary promoted social interactions
The nursing staff, the participants and their families
shared the patients’ critical illnesses by reading/writing in
the diaries. The participants and their families communi-
cated information about the patients so that the nursing
staff could provide the best possible care. The opportunity
to communicate through the diary created a feeling of
maintaining a relationship with the patient, which devel-
oped into an interaction with all parties, instilling
strength and energy into the patient. The diary helped to
build a feeling of trust among the staff, the family mem-
bers and their families, showing that the nursing staff
genuinely cared about the well-being of the patients and
families.
The diary maintained communication
The diary was experienced as a substitute for the usual
opportunities for communication when the patient was
partially or wholly sedated. The participants wrote about
daily events outside the hospital to help the patient form
an understanding of time as the nursing staff conveyed
caring and support from inside the hospital. When nurs-
ing staff wrote about visits with the participants and their
families in a positive way, the participants believed that
they were part of the group that supported the patient.
In turn, this support was experienced as being cared for
along with the patients, which helped support the partic-
ipants and increase their self-esteem.
The participants who wrote in the diary provided news
about other family members, their children’s school
activities, football results and global events that were of
interest to the patient. The participants wrote about the
quality of their day-to-day lives and gave references to
time by adding the date at the beginning of the entries.
The diary was considered as an icebreaker because it
opened up conversations at times when it was difficult
for family members to find something to talk about
among themselves or with the nursing staff.
The diary maintained a relationship
The diary became a link for the participants to express
their presence to the patient when s/he was unconscious
due to severe illness or sedation. Through these entries,
the participants reassured the patient that somebody was
constantly at the bedside. The assurance about their pres-
ence became a joint activity for the patient’s benefit, in
6 M. Johansson et al.
which the participants felt that they contributed in some
way. Writing in and reading the diary provided the par-
ticipants with a sense of unity with the nursing staff
when they supplied the staff with information about the
patient. Likewise, the participants felt supported by the
entries in the diary made by the staff. Some staff mem-
bers expressed their engagement by describing how the
patient interacted with the staff in addition to the event
itself. This detailed account by the nursing staff in the
diaries was considered as acts of support and caring in
addition to their usual duties.
They [the nursing staff] have done it with care. They
have been sitting down and writing. They have taken
the time to sit, write and arrange the diary (P5).
Including photographs in the diary confirmed and aug-
mented the participants’ presence, particularly those who
found it difficult to put one’s thoughts into words in the
diary. When the end came, the relationship with the
patient was broken, but the diary was something that sur-
vived. The diary embodied many of the voices that
expressed the patient’s presence in the past, and the partic-
ipants planned to review the diary when they were ready.
Discussion
This study explored family members’ experiences with
the use of a diary when a relative did not survive his or
her stay in the ICU. The overall study findings revealed
that the diary was experienced as a bridge that connected
the past with the future. This metaphor refers to a tem-
poral dimension; to a time when participants experienced
the past when the relative was alive and the future when
the loved one is no longer alive. The diary also portrayed
a portion of the patient’s life when he or she transitioned
from critically ill to dead, a change that the family mem-
bers attempted to manage.
It is not known why only four of the nine participants
read the diary after the death of their relatives. Some
participants stated that they would read the diary at a
later time because they had so many things to do related
to the loss of the relative. We can only hypothesise
whether that sentiment referred to the acute grief phase
(21) or whether the participants were avoiding the diary
as a sign of PTSD (4). The diary is regarded as an inter-
vention that might prevent or reduce PTSD symptomatol-
ogy in patients and relatives (4, 22). However, the ICU
diary might cause harm if the patient is not provided
with suitable simultaneous psychological support when
the diary is handed over (23). We also suggest that the
same situation is true for family members.
Nevertheless, the participants stated that they knew the
content of the diary (even the participants who had not
read the diary after the death of the relative) because they
had been reading and writing in the diary during the
patient’s stay in the ICU. Participants expressed that the
diary helped them to realise that the patient was critically
ill and that their illness would end in death. The diary
facilitated participants’ ability to deal with difficulties in a
rational and emotionally understanding manner; that is,
reason and emotion had an opportunity to meet. This
finding implies that family members have a need to have
their time spent in the ICU explained and processed. This
finding corresponds with that of Jones (24) who sug-
gested that the provision of a diary directed at the patient
also clarifies the story of the ICU stay for the family
members, thereby decreasing their levels of PTSD-related
symptoms. Jones et al. (4) compared the reading and
re-reading of the diary to cognitive behavioural therapy.
However, the current study also suggests that the diary
contributes to participants’ abilities to gain a sense of
coherence or a way of making sense of the world that,
according to Antonovsky’s philosophy, affects health
(25). That sense of coherence depends on the degree to
which humans experience life as meaningful, compre-
hensible and manageable, and it is the individual’s power
of resistance to cope with stress, maintain health and
even grow and develop further (25) that leads to
increased empowerment (26). The participants referred
to growth via the analogy of taking an existential jour-
ney and coming to terms with what happened to them
during their journey; here, the diary played the role of
‘travel helper’. Furthermore, this analogy is comparable
to achieving a new understanding in the light of
Gadamerian philosophy, which includes understanding
the unfamiliar in a way that is different from the way in
which it has been understood to date, as well as a way to
know oneself in a new way (17).
In addition to a rational and emotional understanding,
the diary promoted social interactions during the hospital
stay, which might be viewed as an integral part of the
experiences of the diary. Roulin et al. (10) understood
the diary as something more than a vehicle to complete
memory gaps. These authors regarded the diary as a car-
ing intervention that signified something larger and dee-
per through which the writers/readers interacted by
sharing their ICU time, feelings and offering support.
Thus, the diary helped to maintain a feeling of together-
ness and engagement in the caring for the patient, which
might have been comforting to the family members (10).
In the current study, the participants stated that they
were included in the caregiving, reflecting the current
healthcare policy that focuses more on person-centred
care and involves recognising and seeing family members
as partners in care (27). Egerod and Christensen (11) and
Egerod et al. (28) previously illuminated the importance
of the diary and its capacity to promote social interac-
tions. These authors stated that ICU diaries serve as a
pretext for conversation and a catalyst for dialogue and
relationships. These findings indicate the diary’s inherent
power, and the nursing staff must be aware of the
© 2017 Nordic College of Caring Science

potential for this method regarding communication
between the nurses and family member. Furthermore,
the way in which family members are included in care
and decision-making can affect the long-term outcomes
(29), for example their well-being in the future.
Not all of the participants had read the diary after the
death of the patient; however, all of them underscored the
usefulness of the diary during the ICU stay when it was
instrumental in meeting the needs of family members in
several ways. The need to be close to the patient was doc-
umented, and the diary became a testimony of all the
hours spent at the bedside. Moreover, the diary was con-
sidered as a source of comprehensive information that
supported the participants and left room for hope. In a
classic study of family members’ needs in the ICU, Molter
(30) highly ranked the need for information, hope and
being at the bedside. This result correlates with the find-
ings of an earlier study by our group in which the patients
survived their stay in the ICU (14). In agreement with
these findings, Garrouste-Orgeas et al. (16) and Nielsen
and Angel (15) described how family members used the
diary to access, understand and assimilate the medical
information and then share it with other family members.
Additional needs that have consistently appeared in
the ‘top ten’ Critical Care Family Needs Inventory
(CCFNI) reports are the need to feel that the hospital
staff care for the patient and the need to be assured that
the patient is receiving the best care possible (31). The
current study showed that the diary helped participants
to reconcile the period of the patient’s illness and death
at the ICU by conveying the engagement of the nursing
staff through their entries showing that they did every-
thing within their power to treat the patient. In other
words, participants used the diary as a debriefing tool,
which helped them to cope with their loss (1, 5). In this
way, the diary not only met the needs of the family
members during their hospital stay but also worked as
bereavement support so that the participants might
understand and process the death of the patient as well
as contribute to their overall well-being.
Methodological considerations
The question of meaning is central to this type of research,
and the current paper suggests that the diary acts as a
bridge that connects the past with the future. A hermeneu-
tic study does not engender a final understanding; how-
ever, the interpreters must come to a proper understanding
in which the parts are brought together into a whole, leav-
ing the hermeneutic circle open for a more complete or dif-
ferent understanding (17). An additional consideration is
one’s pre-understanding, which is constantly operating on
the subconscious level. Hence, the co-authors became a
sounding board, and regular discussions/reflections were
carried out regarding the analysis.
© 2017 Nordic College of Caring Science
Experiences with ICU diaries 7
In this study, the interviews were conducted 3–
11 months after the death of the patient. Some of the
participants had not read the diary for unknown rea-
sons, but they wanted to read it in the future. How-
ever, others stated that they disliked the diary after the
death of the patient and would not read the diary.
Everyone grieves differently, and all ways to grieve are
valid. We interpreted this attitude as that the participant
was still mourning the loss of their relative because the
literature states that the acute grief phase often lasts
~2 months to 2 years (21). Perhaps we should have
adopted a longer time-based perspective because we
did not know anything about how the relationship
between the patient and participant influenced the diary
writing.
Conclusions
Our interpretation of the findings highlighted a temporal
perspective in that the diary was seen to reflect the past,
the present and the future. In this way, the diary repre-
sented a bridge that connected the past with the future.
The diary reflected both a transition in time as well as a
transition from the patients’ critical illness to death, a
change that the participants had to manage. The diary
was ‘a good thing to have’ when it clarified the story of
the ICU stay and might help the participants cope with
the death. The diary synonymised hope for survival until
the patient deteriorated. Overall, the diary worked as a
communication platform and provided an important
source of information. After the death of the relative, the
diary could act as a bereavement support by allowing the
family members to process the death of the patient. Con-
versely, the diary was used to personify death, which
caused suffering.
Acknowledgements
The authors thank the participants for their assistance
with this study.
Author contributions
Maria Johansson, Elizabeth Hanson, Ingrid W
ahlin and
Ingrid Runeson designed the study; Maria Johansson col-
lected the data; Maria Johansson, Elizabeth Hanson,
Ingrid W
ahlin, Lennart Magnusson and Ingrid Runeson
performed analysis; Maria Johansson, Elizabeth Hanson,
Ingrid W
ahlin and Lennart Magnusson wrote the
manuscript.
Ethical approval
The regional ethics committee in Link€ oping, Sweden,
approved this study (Dnr 2012/415-31).
8 M. Johansson et al.
Funding
The Health Research Council in south-east Sweden and
the County Council in Kalmar funded this study. The
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