Received: 9 December 2020 Revised: 28 May 2021
DOI: 10.1111/nicc.12682
RESEARCH
Patients' and relatives' experiences of post-ICU everyday life:
A qualitative study
Louise Buus Vester CCRN, MScN, Assistant Lecturer1
2
Anna Holm RN, MScN, PhD-student | Pia Dreyer PhD, RN, MScN3,4,5
1
VIA University College, Randers School of
Nursing, Randers C, Denmark
2
Department of Intensive Care, Aarhus
University Hospital, Aarhus N, Denmark
3
Institute of Public Health, Section of Nursing,
Aarhus University, Aarhus C, Denmark
4
Department of Intensiv Care, Aarhus
University Hospital, Aarhus N, Denmark
5
Bergen University, Bergen, Norway
Correspondence
Louise Buus Vester, Assistant Lecturer,
Randers School of Nursing, VIA University
College, Jens Otto Krags Plads 3, DK-8900
Randers C, Denmark.
Karl Algreen Møllers Vej 16, DK-8543
Hornslet, Denmark.
Email: buus@via.dk, louisebuus@webspeed.dk
Nurs Crit Care. 2021;1–9.
Accepted: 1 July 2021
|
Abstract
Background: As advancements in intensive care treatment have resulted in
decreased mortality rates, more attention has been given to the experience of life
after critical illness. Despite an increase in literature describing the physical, psycho-
logical, and cognitive health problems arising after critical illness, there is a shortage
of research exploring the lifeworld of patients and relatives, including its internal and
external interplay in everyday life. Addressing this is essential for gaining insights into
the experience of everyday life and recovery after critical illness.
Aims and objectives: To explore patients' and relatives' experiences of everyday life
after critical illness.
Design: Data were collected using semi-structured interviews with 7 relatives and 12
patients. Interviews were audiotaped and transcribed verbatim.
Methods: Drawing on the phenomenological-hermeneutic tradition, data were
analysed using Ricoeur’s theory of interpretation, as described by Dreyer and
Pedersen.
Findings: The lifeworld of everyday life was disclosed in the theme “Finding oneself
after critical illness,” described as an overall comprehensive understanding. This
theme was divided into the subthemes (a) redefining the self, (b) reintegrating with
family, and (c) resuming everyday life, which followed the trajectory of the three
phases: the known past, the uncertain present, and the unknown future.
Conclusion: Critical illness and physical, psychological, and cognitive health problems
create new and emerging difficulties in patients' and relatives' experiences of every-
day life after intensive care. These experiences affect their understanding of them-
selves, their families, and their ability to resume pre-intensive care unit everyday life.
Implications for practice: The study underlines the need to supplement the affirmed
domains in post-intensive care syndrome with a social domain to enhance family-
centred care within the intensive care unit and across sectoral borders. Additionally,
it highlights the need to develop rehabilitation strategies aimed at patients' and rela-
tives' multifactorial health problems.
KEYWORDS
family care in critical care, family-centred care, intensive care, qualitative research, semi-
structured interviews
wileyonlinelibrary.com/journal/nicc © 2021 British Association of Critical Care Nurses. 1
2 VESTER ET AL.

1 | I N T RO DU CT I O N
What is known about this topic
Critical illness and admission to the intensive care unit (ICU) affect
both the patient and the family.1 To improve quality of care, family- • Critical care has shifted from a one-sided patient's focus

centred care models and guidelines are increasingly incorporated into to paying attention to the family experience of critical ill-

critical care settings, thus formalizing families as a unit of care.2-4 As ness, formalizing the family as a unit, hence moving

advancements in intensive care treatment have helped lower mortal- towards family-centred critical care.

ity rates, more attention has been given to the experience of life after • Advancements in intensive care treatment have
5
critical illness. Consequently, knowledge of patients' and relatives' decreased mortality rates, and more attention has been

experiences of everyday life is needed to enhance a family-centred devoted to the experience of life after critical illness.

approach within and beyond the ICU. Thus, this study explores • Post-intensive care syndrome describes the physical, psy-

patients' and relatives' experiences of everyday life after critical chological, and cognitive health care problems that arise

illness. after critical illness and persist beyond intensive care unit
hospitalization.
What this paper adds
2 | B A CKG R O U N D
• The experience of everyday life after critical illness
affects the understanding of the self, family, friends, and
The number of patients admitted to ICUs is increasing and improve-
work life.
ments in technology help more patients survive critical illness and
• The affirmed domains in post-intensive care syndrome
continue rehabilitation at home.5,6 Greater attention has therefore
may be supplemented with a social domain to broaden
been given to the long-term consequences of intensive care treatment
the perspective of recovery and enhance family-centred
and the lives of patients and families. Today, post-intensive care syn-
care.
drome (PICS) (in families PICS-F) is used to describe new or worsening
• There is a need to develop multifactorial rehabilitation
physical, psychological, and cognitive health problems arising after
strategies that include relatives and are aimed at their
critical illness and persisting beyond ICU hospitalization.7 The physical
multifactorial health problems.
impairments experienced by patients include bodily weakness, pain,
fatigue, and sleep disturbances.8 Sleep disturbances are also present
in families and have been found to worsen with the demands of
balancing caregiving and work.9 Among ICU survivors, 4% to 62%
experience long-term cognitive difficulties, including deficits in mem- the experience of survivorship from the perspective of either the
10,11
ory, attention, decision-making, and executive functions. Frivold patient or relatives.12,25,26,29,30 Hence, a research gap exists regarding
12
et al also found memory loss in relatives and difficulties in exploration of the lifeworld of both the patient and the relative,
expressing themselves, which are attributed to the experience of hav- including its internal and external interplay in post-ICU everyday life.
ing a critically ill family member. Psychological impairments experi- According to Elliot et al,31 broadening the exploration of everyday life
enced by patients and relatives include post-traumatic stress disorder, is essential to understand the full aspect of recovery after critical ill-
anxiety, and depression.13-15 ness. As such, knowledge of patients' and relatives' experiences of
This knowledge has spurred growing interest in research aiming everyday life will add greater insights into the impact of critical illness
to identify interventions targeted at preventing or reducing PICS on everyday life and broaden the perspective of patients' and rela-
16
within and beyond the ICU, for example, the ABCDEF bundle, flexi- tives' recovery post-ICU.
ble family visitation,17 early mobilization,18 family participation in
care,19 ICU diaries,20,21 and follow-up clinics.22 Follow-up offers have
been described as an important professional area that ICU nurses 2.1 | Aim
23,24
have been recommended to conduct. Several nursing studies
have illuminated the experience of being an ICU survivor or relative To explore patients' and relatives' experiences of everyday life after
after critical illness. ICU survivors struggle for independence by trying critical illness.
to regain physical strength, functional capacity, and previous domestic
roles.25 Relatives find themselves forced to take on a caregiving role,
entailing demanding responsibility for the patients' recovery and 3 | METHODOLOGY AND METHODS
household.12,26
Despite the growing body of literature on recovery after critical The study was designed as a single-centre qualitative study within the
27
illness, studies have predominantly focused on the incidence and phenomenological-hermeneutic tradition.32 Data were collected using
experience of physical, psychological, and cognitive health problems semi-structured interviews32 and analysed using a method inspired by
5,11,28
and rehabilitation, the needs following critical illness, and/or of the French philosopher Paul Ricoeur's Theory of Interpretation.33
VESTER ET AL.
According to Ricoeur, phenomenology and hermeneutic are inter-reli-
ant, and by grafting phenomenological comprehension with herme-
neutic explanation, a deeper understanding of lived experiences
emerges.34
3.1 | Participants and setting
A purposive sample of former ICU patients and relatives was recruited
from March 2018 to January 2019. Participants were enrolled from
two multidisciplinary ICUs in a Danish university hospital with 44 beds
and an annual flow of approximately 4000 patients. Participants were
included irrespective of sex, diagnosis, and length of ICU admission,
but had to meet the following inclusion criteria: aged over 18 years;
experiences of physical, psychological, or cognitive health problems in
everyday life; and Danish speaking. Participants were approached dur-
ing their visit to the ICU follow-up Café: a rehabilitation offer, inspired
by ICU steps,35 where patients and relatives share ICU experiences.36
Patients and relatives who narrated about physical, psychological, or
cognitive health problems met the inclusion criteria. Patients and rela-
tives attend the follow-up clinic alone or together, which enabled a
pragmatic enrolment approach and made it possible to include both
patients and relatives. Initially, participants received written informa-
tion about the study. Subsequently, the first author (L.B.V) contacted
them by telephone and at this point both patients and relatives were
invited to participate. Of these, two patients had no relatives, four rel-
atives declined, and one patient did not speak Danish. Therefore,
12 patients and 7 relatives were enrolled; hereof six patients and six
relatives were of the same family. Information about ICU admission
was provided by the participants (Table 1).
3.2 | Ethical considerations
37
The study conformed to the principles of the Helsinki Declaration.
According to Danish law, interview studies do not require ethical
38
approval. Informed consent was obtained verbally and in writing. Par-
ticipants were informed that participation was voluntary and of their
possibility to withdraw. Confidentiality was ensured by storing personal
identities and transcripts separately and securely and by anonymizing
statements using a numerical coding system. Participants were offered
to revisit the follow-up clinic in the event of emotional distress.
3.3 | Data collection
ICU patients and relatives are a vulnerable population and the topic of
the study of emotive nature. Designing the study, we therefore
decided to give higher priority to ethical concerns than methodologi-
cal considerations, as suggested by Norlyk et al.39 As such, the inter-
views were conducted in accordance with participants' preferences,
for example, the time and place of the interview and whether to be
interviewed individually or together. This resulted in three types of
3
interviews: (a) single interview (S) with a patient (P) or relative (R),
(b) single interview (2S) with patient and relative separately, and
(c) dyadic interview (D) with patient and relative simultaneously
(Table 1). This variation in interviews gave depth to data.39 The indi-
vidual interviews exclusively covered experiences of the phenome-
non. The dyadic interviews covered shared experiences by enabling
families to interact, supplement, and correct each other. According to
Taylor and de Vocht,40 shared experience is especially important
when exploring the impact of a life-threatening illness in socially
defined relationships, for example, experiences of everyday life post-
ICU. Interviews were conducted by one author (L.B.V) after the
patient's discharge from hospital or rehabilitation ward. By this time,
we assumed that the participants had experienced everyday life post-
ICU, enabling them to narrate about the phenomenon. The interviews
were based on a semi-structured interview guide that included in-
depth open-ended questions, for example, Please narrate about your
experience of everyday life? In dyadic interviews, circular questions, for
example, Do you feel the same as your wife?, ensured that both parties
recounted their experiences of the phenomenon. Two interviews
were conducted at the hospital, the rest at the participants' homes.
Interviews lasted between 35 and 75 minutes were audiotaped and
transcribed verbatim. Reflective notes were documented concerning
the atmosphere, for example, the dynamics and power structures in
the dyadic interview and of the interviews' “space” and “place.”32,41
3.4 | Data analysis
Data were analysed using a method inspired by Ricoeur's theory of
textual interpretation.33 The analysis was conducted by one author
(L.B.V) and subsequently discussed and revised among all authors.
Textual interpretation involves a dialectic movement between expla-
nation and comprehension, entailing a continuous shift between the
whole and parts in an endless hermeneutic spiral, revealing new and
deeper understandings of being in the world.33,34 We chose the
Ricoeur-inspired method of Dreyer and Pedersen.33,34 Reaching an in-
depth understanding and disclosing the lived experience involved
three steps: (a) naïve reading, where a general sense of the text in its
entirety creates an immediate understanding of the meaning content;
(b) structural analysis, where the dialectic movement between what
the text says and what it speaks about leads to the development of
themes; (c) critical analysis and discussion, where a deeper under-
standing of being-in-the world is achieved by including perspectives
from the literature to create validity and credibility to the interpreta-
tion. The use of NVivo 1242 facilitated the dialectic movement
between the parts and the whole during the coding of the text and
therefore correlated well with Ricoeur's theory of interpretation.
4 | FI ND I NG S
Through structural analysis, one theme and three subthemes
emerged.
4 VESTER ET AL.

TABLE 1 Participants characteristics, interview type, and information on ICU admission

Interview type: single (S), Patient (P) Relative (R) Length of ICU
Interview reference No. dyadic (D), 2  single (2S) gender relationship stay (days)
1 S Female 5
2 S Male 5
3 D Male Wife 1
4 2S Female Mother 4
5 S Female 14
6 D Male Wife 7
7 D Male Wife 4
8 S Male 5
9 S Female 6
10 D Male Wife 11
11 2S Male Mother 5
a
12 S Female
13 S Husband 5

Note: S is the single interview with either a patient or relative; 2S is 2  single interviews with a patient and relative separately; and D is the dyadic
interview with both a patient and relative simultaneously. P is referring to quotes by the patient. R is referring to quotes by the relative.
a
No knowledge of length of ICU stay.

4.1 | Finding oneself after intensive care

The patient and the relatives struggled to find themselves in everyday

life after critical illness, which was described as an overall comprehen-
sive understanding. The struggle was rooted in the experience of
physical, psychological, and cognitive health problems that altered the
experience of oneself, the family, and everyday life. To find oneself
after critical care implied redefining the self, reintegrating with family
and resuming everyday life. In this, patients and relatives followed a
trajectory of three phases: the known past, an uncertain present, and
the unknown future. The correlation between the theme, subthemes,
and phases is graphically presented in Figure 1.

4.1.1 | Redefining the self FIGURE 1 Correlation between theme, subthemes, and phases

Both patients and relatives described an overwhelming sense of grati-

tude having survived critical illness and being able to return home.
However, these feelings diminished when struggling with physical,
psychological, and cognitive problems that alienated them from their
previous familiar body and prevented them from resuming their pre-
ICU everyday lives: “I thought I could do the things I did before. I was
so surprised. My body felt so different” (1-SP). Due to these experi-
ences, patients and relatives were forced to alter their self-regard.
This was an overwhelming realization, which resulted in grief about
lost identity. They reminisced about their past physical, psychological,
and cognitive abilities and strove to feel “normal” again. Even small
glimpses of their preconceptions of normalcy made them feel joyful:
“I love when I do things I did before. Then I feel like myself. I feel nor-
mal!” (8-SP). As time passed, patients and relatives realized that they
might not be able to return to their pre-ICU life. They found
themselves in an uncertain present, wondering: “Who am I? I don't
know. Being ill and dependent for so long has become part of who I
am” (4-SP). Gradually, they accepted the ICU experience as an integral
part of their lifeworld, which helped them to redefine the self. This
process implied getting accustomed to new sides of oneself: “You
need to know yourself all over again. This isn't always a pleasant expe-
rience. You think you would know how you act and what you say.
Sometimes I can't recognise myself” (9-SP). Despite patients and rela-
tives struggled with physical, psychological, and cognitive problems
long after discharge, their ability to find themselves enabled them to
relate to their life ahead. Nevertheless, uncertainties whether the
patient was on the pathway of recovery or becoming critically ill again
were always present: “Is it true, he's getting better?” (3-DR). For
some, this meant being vigilant and taking precautions: “Finding
VESTER ET AL.
oneself is knowing when to react to bodily signals.” (5-SP). Others
strove to live their lives with their ICU experience as part of their his-
tory: “The experience is part of who I am; in this way, I will continue
my life” (4-SR).
4.1.2 | Reintegrating with family
Patients and relatives acknowledged their families as an invaluable
support during the illness and recovery process: “Having a relative,
means everything!” (7-DP). However, a common concern was the
adverse effect the critical illness had on the family. As a result, they
spared each other of thoughts, feelings, and health problems: “We
both still struggle. That's why I don't tell him how I feel” (11-SR). Lack
of sharing led to misunderstandings and prevented them from
reintegrating in everyday family life. “I don't know what they're going
through, and they don't know what I'm going through!” (4-SP). Misun-
derstandings escalated with progress in physical abilities as patients
appeared well but continued to struggle psychologically and
cognitively.
During hospitalization, relatives carried out domestic routines.
This created new routines and roles in the family, leaving some
patients feeling redundant. They reflected sorrowfully on the past and
tried to reclaim their role in the family but were inhibited by fatigue
and physical weakness: “I used to do everything, the household, the
girls… Things I couldn´t do while in hospital. My husband still takes
care of everything, leaving me wondering: What am I in this family?”
(4-SP). Other patients felt an expectation to resume their role in fami-
lies immediately after discharge. Lack of ability to do so created an
additional strain on relationships: “My daughter was upset because I
couldn't do the things I used to!” (1-SP).
Although relatives took on additional chores and caregiving tasks,
they also longed to return to their previous family roles. A mother car-
ing for her ill daughter and new-born grandchild narrated: “I want us
to be like before. I hope we will, but I don't know” (4-SR).
Slowly, patients and relatives found themselves reintegrating with
each other as the illness experience diminished, and patients' physical,
psychological, and cognitive abilities improved: “Now, I don't sleep all
the time. That makes a huge difference in our family” (1-SP). Concur-
rently, appreciation of family became even more evident: “Having a
family is so important. I couldn't do this without them” (11-SP).
4.1.3 | Resuming everyday life
Patients and relatives tried to re-engage with friends and social activi-
ties as part of resuming everyday life. Although friends were experi-
enced as an invaluable support, patients and relatives described a
discrepancy in friends' perceptions of time and well-being. Friends
tended to compare progress in the patients' physical abilities with
improvements in their overall well-being and how quickly this pro-
gress had happened after ICU discharge. In contrast, patients felt dish-
eartened about still having to battle anxiety, fatigue, pain, and inability
5
to read and concentrate: “My friends kept commenting on progress in
my physical ability. For me, I've felt stuck in a long, endless struggle
with other ongoing problems” (4-SP). These misunderstandings made
patients suppress the urge to share struggles with friends. However,
sometimes the urge to share their experiences was so profound that
they did not reflect upon the recipient: “One day, a truck driver came
with wood supply and I told him everything! The urge is so strong that
I don't notice or listen to people” (12-SP). Participants described how
the ICU experience had changed their perspective of life, which
affected some friendships. Friendships inattentive to their struggles
were often terminated: “Life-threatening experiences changes your
perspective. The friends who stick around and listen, you hold onto.
Those who don't, you end” (4-SR).
For patients employed prior to their hospitalization, re-entering
work life was important for finding oneself as this was an integral part
of their identity. Nevertheless, several patients were unable to work
due to physical and cognitive problems, for example, bodily weakness,
fatigue, and inability to read and concentrate: “Work is part of my
identity. But I can't because of my physical and cognitive challenges. I
tried to write an e-mail. You would think I was dyslexic!”(9-SP). The
relatives' inability to work was prompted by the necessity to care for
patients. Initially, most employers offered reduced hours or long-term
sick leave. However, these offers eventually diminished due to lack of
understanding of their ongoing struggles. As a result, participants
were left with a feeling of having been misunderstood and of having
their experiences invalidated. “I tried to convince her that my strug-
gles were real, but she wouldn't listen. She thought I was crazy!”
(1-SP). Consequently, several patients and relatives sorrowfully left
their job. “Losing my job feels like losing an old friend” (8-SP). Despite
of an unknown future, new job opportunities appeared, which made
patients and relatives enthusiastic about their future work life and
enabled them to find themselves after intensive care.
A minority of patients were offered standardized rehabilitation
programmes. However, these programmes were aimed at the illness
causing the ICU admission and not on the experience of critical care
or their everyday life. Moreover, none included relatives. Participants
described being “left without a lifeline” (7-DR) and feeling “left on my
own” (1-SP) to grasp the experience of health problems in everyday
life. “The ICU nurses underlined that we as a family were affected by
the experience. However, after discharge, focus was solely on my
problems, and never were our problems associated with us all having
experienced critical illness” (4-SP). As a result, participants sought help
to manage their struggles. Several participants shared their numerous
encounters with general practitioners (GP) and psychologists who
lacked understanding of their ICU experience and struggles. This con-
tributed to participants feeling unsure and questioning if their strug-
gles were real. Participating in ICU follow-up validated their
experiences and gave them the knowledge and ability to manage
their struggles. Peer support was particularly helpful: “Listening to
people sharing their struggles with everyday life validated my experi-
ences. They were finally real!” (4-SR). ICU follow-up provided the help
needed and enabled them to find themselves in everyday life
post-ICU.
6 VESTER ET AL.

5 | CRITICAL ANALYSIS AND DISCUSSION illness-in-the-foreground perspective when focusing on physical,

This qualitative study illuminates patients' and relatives' struggle to
find themselves after critical care, rooted in the experience of physi-
cal, psychological, and cognitive health problems, which alters the
experience of oneself, the family, and everyday life. Consistent with
the literature, we found that experiences of critical illness and of phys-
ical, psychological, and cognitive problems affected patients' and rela-
tives' experiences of themselves, the family, and their relationships
with friends and work life.12,25,26,43 These findings confirm the pres-
44
ence of impaired social health, which in the study of Hahn et al
defined as one's ability to participate in activities with others, carry
out one's usual roles and responsibilities and relationships, and con-
nect with important others.
Patients and relatives experienced that the initial gratitude for
having survived critical illness subsided as physical, psychological,
and cognitive problems arose. Consistent with the literature, we
found that patients and relatives experienced everyday life to be
dominated by a surprisingly slow and prolonged physical and men-
tal recovery.45 In our study, this affected participants' ability to
define themselves in relation to themselves, their family, friends,
and work life. Though untested in the ICU population, the trajec-
tory that patients and relatives followed, in finding themselves in
everyday life, may be described by the Shifting Perspectives Model
of Chronic Illness.46 According to Paterson,46 living with chronic ill-
ness is a shifting process in which people experience a dialectical
movement between themselves and the “world.” The model
includes two perspectives between which one shifts. Illness-in-the-
foreground is characterized by focus on sickness and suffering,
which is destructive to oneself and others. Wellness-in-the-
foreground includes an appraisal of the illness as an opportunity for
meaningful changes in relationships. Here, the person attempts to
create consonance between self-identity and the new identity cre-
ated by the illness. In our study, patients and relatives assumed an
psychological, and cognitive inabilities, an altered self, changed
family roles, and difficulties in resuming social activities. These
experiences correlated with studies exploring patients' and rela-
tives' lives after critical illness.25,26 According to Lykkegaard and
Delmar,47 these experiences arise from a dependency that extends
beyond ICU admission. Dependency interferes with one's previous,
present, and future understandings of self, and bodily changes hin-
der one's previous family roles and actions. In our study, shifting to
a wellness-in-the-foreground perspective was facilitated by accep-
was tance of the ICU experience as part of one's lifeworld, the support
of loved ones, and attending the ICU follow-up. It was described as
finding a new kind of normalcy.43 However, life incidents, for
example, the inability to work, tended to result in a return to an
illness-in-the-foreground perspective.
Consistent with the literature, we found that resuming social
activities and work life was important for defining oneself in every-
day life.48 However, most of the patients and relatives who were
employed prior to the critical illness were unable to work after the
ICU stay. This finding correlates with studies that found a decrease
in patients' and relatives' pre-ICU employment at 3- and 12-month
follow-up.26,49,50 In line with this, we found that the patients' phys-
ical and cognitive problems and the relatives' caregiving role
resulted in prolonged sick leave, working part time, or unemploy-
ment. However, while the study by Norman et al50 found physical
deficits to be the predominant cause of unemployment proximate
to ICU admission and cognitive deficit to cause patients' long-term
inability to maintain employment, this was not the case in our
study. Cognitive problems, for example, inability to read and con-
centrate, were described immediately after returning to everyday
life and resulted in inability to work. This finding correlates with
the review of Wolters10 who found cognitive impairment in 4% to
62% of patients after follow-up of 2 to 156 months. Changes in the
patients' and relatives' employment status provided evidence of

Family-centred care
Post Intensive Care Syndrome
in family (PICS-F)
and survivors (PICS)

Mental Health Cognitive Health Physical Health Social Health

PTSD Executive functions, e.g. Fatique Altered experience of oneself
Depression memory loss Sleep disturbances the family and everyday life
Anxiety

Within and beyond the ICU

FIGURE 2 Family-centred care approach framing mental, cognitive, physical, and social health problems within and beyond the ICU
VESTER ET AL.
the burden and disruption to everyday life caused by critical illness
and highlighted the need to support this population re-entering
work life.
Only a minority of patients were offered rehabilitation strate-
gies. These strategies focused on the illness that caused the ICU
admission, for example, cancer, and were targeted at regaining
49
physical abilities. Aagaard et al showed that ICU survivors gener-
ally found their physical rehabilitation needs fulfilled. However, our
findings correlated with those of Schandl et al,51 who found that
despite considerable physical impairments, only two-thirds of a
group of ICU survivors received ongoing physical rehabilitation
after 3 months. Although several participants described cognitive
problems as a factor that prohibited resumption of everyday life,
only one received community-based cognitive training. Similarly,
the psychological problems experienced by patients and relatives
were not systematically addressed. These findings confirm that the
ICU experience and the physical, psychological, and cognitive prob-
lems experienced by patients and relatives are not acknowledged,
7,24
nor is their need for multifactorial rehabilitation. Although evi-
dence of the clinical benefits and cost-effectiveness of ICU follow-
ups have yet to be determined,52 our explorative study showed
that this offer of follow-up and peer-support targeted the patients'
and relatives' diverse health care problems and helped them find
themselves in everyday life after intensive care.
Similar to the existing literature, our findings show that the expe-
rience of critical illness and the emergence of physical, psychological,
and cognitive health problems in everyday life may awaken existential
issues, changing the patients' and relatives' experience of life and rela-
tionships.53 However, by relating to their past, present, and future,
patients and relatives were able to find themselves in a new everyday
life in relation to themselves, their family, friends, and work life.
Previously PICS and PICS-F have been reported as consequences
of critical illness and side by side.7 Our findings indicate a correlation
between them and the importance of supplementing the affirmed
54
domains with a social health domain, as in PICS-p. Seeing the syn-
dromes as intertwined accede to more family-centred approaches to
care for patients' and relatives' within the ICU and beyond in their
everyday lives (Figure 2).
5.1 | Trustworthiness and limitations
The qualitative design was suitable for exploring the lifeworld related
to the phenomenon. Trustworthiness was ensured by using consistent
methodology throughout the study, for example, transparent strate-
gies in enrolment of participants and analysis of data. Additionally, the
use of researcher triangulation, where all authors discussed their
embedded pre-understanding when designing the interview guide and
data analysis, deepened and added dependability and credibility to the
findings. In the enrolment and interview design, we favoured ethical
considerations due to the vulnerability of this ICU population and the
emotional nature of the topic. This yielded a large, heterogeneous
sample of patients, relatives, and family variables in terms of
7
relationship, gender, and length of ICU stay. However, it also created
variety in the interview design and thereby a lack methodological strin-
gency. In interviews, we addressed methodological challenges, for
example, in dyadic interviews, we avoided that any one or more partici-
pants would dominate the interview. In single interviews with families,
we ensured that family members left the room, enabling the inter-
viewee to narrate their experiences of the phenomenon openly. We
cannot exclude that participants in dyadic interviews answered untruth-
fully in consideration for their family. However, we believe that attend-
ing the ICU follow-up Café prior to the interviews was a gate-opener to
increase awareness of their different experiences of the critical illness,
which facilitated the families to share their experience openly in the
subsequent interviews. Thus, further validation of their responses could
have been achieved had participants been interviewed individually and
together. The interview locations were chosen for familiarity and suit-
ability and enabled participation in the study. Though designed as a
single-centre study, variety in the population may reflect the challenges
that patients and relatives are faced with in their everyday life after crit-
ical care. Transferability to other countries demands similarity in work
life, offers of follow-up, and family relationships.
6 | CONC LU SION AND I MPLICA TIONS
FO R P RA C TIC E
Critical illness and the experience of physical, psychological, and cog-
nitive care problems create new and emerging difficulties for patients
and relatives facing everyday life after critical illness. This experience
affects their understanding of themselves, their family, and their abil-
ity to resume everyday life, for example, work and social activities.
Findings highlight the importance of supplementing the affirmed
domains in PICS with a social health domain. Not only will this
increase ICU nurses' and stakeholders' attention to patients' and rela-
tives' experiences of social health in everyday life, it will also broaden
our understanding of PICS and contribute to understanding recovery
after critical illness more fully. Together, this will establish the grounds
for ICU nurses to enhance a family-centred care, to educate patients
and families in all domains of PICS, and for future research to develop
rehabilitation strategies targeting their multifactorial health problems.
Additionally, it will strengthen cross-sectoral collaboration with GPs
and community services and educate employers to help patients and
relatives re-enter work life.
OR CID
Louise Buus Vester https://orcid.org/0000-0002-2136-938X
Anna Holm https://orcid.org/0000-0002-2582-4984
Pia Dreyer https://orcid.org/0000-0002-3581-7438
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How to cite this article: Vester LB, Holm A, Dreyer P.
Patients' and relatives' experiences of post-ICU everyday life:
A qualitative study. Nurs Crit Care. 2021;1-9. https://doi.org/
10.1111/nicc.12682