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ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
From spouse to caregiver and back: a grounded theory study of
post-intensive care unit spousal caregiving
Anne Sophie �Ag�ard, Ingrid Egerod, Else Tønnesen & Kirsten Lomborg
Accepted for publication 17 February 2015
Correspondence to A.S. �Ag�ard:
e-mail: [email protected]
Anne Sophie �Ag�ard MScN PhD
Clinical Nurse Specialist
Department of Anesthesiology and Intensive
Care, Aarhus University Hospital, Denmark
Ingrid Egerod PhD
Professor
University of Copenhagen, Health &
Medical Sciences, Copenhagen University
Hospital Rigshospitalet, Trauma Center,
Denmark
Else Tønnesen DMSc
Professor
Department of Anesthesiology and Intensive
Care, Aarhus University Hospital, Denmark
Kirsten Lomborg MScN PhD
Professor
Faculty of Health Sciencies & Aarhus
University Hospital, Aarhus University,
Denmark
�AG �AR D A . S . , E G E R O D I . , T Ø N N E S E N E . & L O M B O R G K . ( 2 0 1 5 ) From spouse
to caregiver and back: a grounded theory study of post-intensive care unit spousal
caregiving. Journal of Advanced Nursing 71(8), 1892–1903. doi: 10.1111/
jan.12657
Abstract Aim. To explore the challenges and caring activities of spouses of intensive care
unit survivors during the first year of patient recovery.
Background. Every year, millions of people globally are discharged from an
intensive care unit after critical illness to continue treatment, care and
rehabilitation in general hospital wards, rehabilitation facilities and at home.
Consequently, millions of spouses become informal caregivers. Little is known,
however, about the concrete challenges spouses face in post-intensive care unit
everyday life.
Design. Explorative, qualitative grounded theory study.
Methods. Participants were spouses of intensive care unit survivors. The study
was undertaken in Denmark in 2009–2010. Data consisted of 35 semi-structured
dyad interviews at 3 and 12 months post-intensive care unit discharge, two group
interviews with patients and two with spouses.
Findings. ‘Shifting their role from spouse to caregiver and back’ was identified as
the core category of the study. The role shifts progressed in a dynamic process
involving four elements: (1) committing to caregiving; (2) acquiring caregiving
skills; (3) negotiating level of caregiving and (4) gradually leaving the caregiver
role. Post-ICU caregiving comprised five patient dimensions: observing, assisting,
coaching, advocating and managing activities.
Conclusions. Spouses play a vital and multifaceted role in post-intensive care unit
recovery. The findings can inform healthcare professionals in their efforts to
prepare intensive care unit patients’ families for the time following intensive care
unit and hospital discharge. Hospital staff, rehabilitation experts and primary
care professionals must acknowledge spouses’ important contribution from
intensive care unit admission throughout recovery.
Keywords: caregivers, caregiving, critical care, family, grounded theory, ICU,
intensive care, nursing, recovery, spouses
1892 © 2015 John Wiley & Sons Ltd
Introduction
Every year, millions of people globally are discharged from
the intensive care unit (ICU) to continue treatment, care and
rehabilitation in general hospital wards, rehabilitation facili-
ties and at home (Iwashyna 2010) and millions of people
become informal caregivers. Internationally, the 12-month
post-ICU mortality rate is 26-63% (Williams et al. 2005).
Some ICU survivors recover fully while others suffer from
major or minor conditions (�Ag�ard et al. 2012, 2014). Pro-
viding patients and relatives with the knowledge and skill
required to manage an illness at home is at the very heart of
nursing practice (Schumacher et al. 2000). In critical care,
expanding knowledge of the post-ICU experience of the
family unit is a research priority to maximize family support
throughout the critical illness trajectory (Angus & Carlet
2003, Paul & Rattray 2008, Needham et al. 2012).
Background
Critical illness and admission to the ICU can be a crucial
experience for patients and close relatives. In the following,
we use the term relatives to include both family and others
close to the patient. Relatives are often involved prior to
admission and follow the patient throughout hospitalization
and convalescence, acting as a source of support and com-
fort (Bergbom & Askwall 2000, Engstr€om & S€oderberg
2007, Lee et al. 2009). In the ICU, relatives often experi-
ence emotional turmoil worrying about the patient’s recov-
ery. Yet, they can be resourceful striving to cope and adapt
to a changed reality (Hupcey 1999, �Ag�ard & Harder 2007,
Linnarsson et al. 2010, Vandall-Walker & Clark 2011).
When the patient is transferred to the general ward, rela-
tives follow to support the patient (Mitchell et al. 2003).
After hospital discharge, relatives assist the patient in the
struggle to regain physical and functional independence
(�Ag�ard et al. 2012, 2014). This may lead to lifestyle
changes or restrictions (Choi et al. 2011) or reduced ability
to work (Van Pelt et al. 2007). In the past two decades,
several studies have shown that the quality of life of rela-
tives of ICU survivors is poorer than in the general popula-
tion (Johnson et al. 2001). Some studies even suggest that
relatives might suffer greater anxiety or depression than the
patient (Azoulay et al. 2005, Young et al. 2005). Little is
known, however, about the characteristics of post-ICU
everyday life and relatives’ role after ICU discharge.
Danish society
The context of this study is the Danish welfare state. The
Danish society is characterized by universal welfare services
such as tax-financed education and health care, including
rehabilitation services (The Ministry of Foreign Affairs of
Denmark 2013). Reimbursement for sick leave and lost work
is relatively high. The employment rate of Danish women
(70%) is among the highest in the world (OECD 2013).
Why is this research needed?
� Relatives follow the critically ill patient throughout the ill- ness trajectory and act as an important source of comfort
and support.
� After intensive care unit discharge relatives have been reported to experience anxiety, depression, caregiver bur-
den and lifestyle disruption. Little is known, however,
about the concrete challenges facing caregiving spouses in
post-intensive care unit everyday life.
� To maximize family support throughout the critical illness trajectory expanding knowledge of the post-intensive care
unit experience of intensive care unit survivors and their
families is a research priority in critical care.
What are the key findings?
� After intensive care unit discharge spouses play a vital role providing multifaceted informal care to support patient
recovery and comfort.
� The main concerns of the caregiving spouses in the first 12 months after intensive care unit discharge were to pro-
mote patient recovery while keeping the couples’ practical
and social lives together.
� In the context of the Danish society, the spouses with no prior caregiving experience actively took on the caregiver
role and engaged in the process of informal caregiving
developing the skills necessary on a learning-by-doing
basis. Often they felt alone with a great responsibility.
How should the findings be used to influence policy/ practice/research/ education?
� The findings can inform healthcare professionals’ efforts to prepare intensive care unit patients’ families for the time
following intensive care unit and hospital discharge.
� Interventions to accurately identify resources and demands in post-intensive care unit caregivers’ situations and facili-
tate targeted supportive interventions, whether provided by
the primary or secondary healthcare sector, must be con-
sidered.
� Further research to broaden understanding of the context, extent, conditions and processes of informal post-intensive
care unit caregiving provided by spouses or other relatives
in different national settings is needed.
© 2015 John Wiley & Sons Ltd 1893
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE Post-ICU spousal caregiving
The study
Aim
The aim of this study was to explore the challenges facing
spouses of ICU survivors and describe and explain their
concerns and caregiving strategies during the first 12
months post-ICU discharge.
Design
The study used a qualitative design, based on grounded
theory (GT) methodology with semi-structured interviews.
Participants were spouses of ICU survivors. The study
was part of a larger project exploring the first year
of recovery in patients, spouses and couples after ICU
discharge.
Participants and setting
Over 9 months in 2009–2010 participants were recruited
from five ICUs in Denmark (four general and one neurosur-
gical). Although the focus of this study is on the spouse, the
selection pertained to the patient. People 25-70 years of
age, who had been intubated more than 96 hours (the most
severely ill) (Douglas & Daly 2003) and who lived with a
spouse, were included. In the following, the term spouse
includes either spouses or cohabiting partners. Previous ill-
ness has a major impact on post-ICU outcome (Orwelius
et al. 2010). To explore the consequences of the current ill-
ness trajectory, people with conditions expected to have
severely affected daily life prior to their critical illness (e.g.
major heart, lung, or neurological disease, depression,
schizophrenia, brain damage, cancer, a recent history of
drug/alcohol abuse or attempted suicide) were excluded. All
participants spoke Danish.
Ethical considerations
Ethical and legal approval of the study procedures were
obtained from the National Board of Health (7-604-04-2/
158/EHE) and the Danish Data Protection Agency (2009-
41-3022). Prior to approaching participants, the hospital
register was checked to make sure the patient was still
alive. Participants were contacted by mail 10 weeks after
discharge from the ICU, informed about the study and
invited to participate. Written consent prior to inclusion
was obtained. At each interview, consent information was
repeated verbally and in writing, including the right to
withdraw at any time.
Data collection
Data were generated from semi-structured dyad interviews
with patients (n = 18) and spouses (n = 18) at 3 months
(n = 18 patients, n = 18 spouses) and 12 months (n = 17
patients, n = 16 spouses) after discharge from the ICU. One
couple and one spouse withdrew from the study (see
Figure 1). The dyad interviews were conducted in the
couples’ homes or at the hospital.
To describe and explain spouses’ concerns and strategies
in the context of their shared life with the ICU survivor,
dyad interviews were chosen as the primary data source. In
joint interviews, patient and spouse can corroborate or sup-
plement each other’s stories. They can probe, correct, chal-
lenge or introduce fresh themes for discussion that can
provide richer data (Taylor & de Vocht 2011). Joint inter-
views also enabled spousal interactions as a source of data
(Astedt-Kurki et al. 2001). To illustrate, a spouse quietly
left the dyad interview and returned with medicine and a
glass of water for her husband. She did not articulate this
activity and returned quietly to the interview a minute later.
This type of interaction illustrating her approach to a sim-
ple caregiving task would be lost in individual interviews.
To complement the dyad interviews, also group inter-
views were conducted, two with spouses (n = 2 and 7) and
two with patients (n = 3 and 7). For practical reasons, not
all spouses were able to participate in the group interviews.
The group interviews were conducted at the hospital in a
private room.
Data analysis
Assuming that the spouses’ main concerns and responsive
strategies are interrelated, we believe the interviews also
gave us an indication of how the spouses act. Analysis
started during the initial round of interviews with open
Eligible couples (n = 33)
Enrolled couples (n = 18)
Completed 12-month Interview • Patients (n =17) • Partners (n =16)
• Partners (n = 2)
• No answer (n = 14) • Declined participation (n = 1)
• Patients (n = 1) Early withdrawel (n = 3)
Excluded couples (n = 15)
Figure 1 Participant enrolment.
1894 © 2015 John Wiley & Sons Ltd
A.S. �Ag�ard et al.
coding conducted in accordance with GT methodology
(Glaser 1978). The developed codes were merged into cate-
gories and by constantly coding, analysing and theoretically
sampling new data, we gradually identified categories and
their dimensions and properties in an active interplay
between data and the researchers. When a higher order cate-
gory consistently relating to many other categories was iden-
tified, this core category was chosen as the basis of a latent
structural pattern of the substantive theory and the starting
point of further selective and theoretical coding (Glaser
1998). When the subsequent data collection and analysis did
not seem to make further contributions to the emerging the-
ory, it was considered theoretically saturated. Written
memos helped us to stay theoretically sensitive, as we were
able to track the emergence of provisional ideas and com-
pare those with later findings. The semi-structured interview
guides were refined several times. The 60-90-minute inter-
views were audio-taped and transcribed verbatim. NVivo8
(QSR International, Melbourne, Australia) was used for
data management throughout the analysis.
Trustworthiness
The criteria for critically appraising a GT are whether the
findings ‘fit’, ‘work’, are ‘relevant’ and ‘modifiable’ (Glaser
1978). From a critical realist epistemological stance, the
concept ‘fit’ is a simple way to express correspondence to
social reality and the central function is to enable external
validation of research in social processes (Lomborg & Kir-
kevold 2003). As described above, we carefully adhered to
the analytic strategies of the methodology to allow the cate-
gories to emerge from the interview data rather than from
any pre-established theoretical perspective. This procedure
served to ensure that our findings fit well to the situation of
Danish spouses of ICU survivors during the first year of
patient recovery. Not every future spouse will follow the
trajectory from spouse to caregiver and back, but we
believe our findings explain typical patterns of reaction of
ICU spouses and might possibly predict what other spouses
may experience. We believe the theory is relevant to clinical
practice. If new measures to support spouses are imple-
mented, the post-ICU experiences of spouses may change
and the theory be modified accordingly.
Findings
The context of post-ICU convalescence
To illustrate the context of post-ICU convalescence, charac-
teristics of the spouses and patients are provided in Table 1
and below. Most of the spouses were in good health, but a
few reported physical problems, such as pain and arthritis.
One spouse described social problems and a history of drug
abuse. The couples had been together from 4 to 45 years.
One couple separated during the first year after discharge
from the ICU and one spouse received psychological coun-
selling from a general practitioner (GP).
The demographic data from the sample of 18 spouses
correspond to the 18 ICU survivors – see Table 1. The ICU
survivors reported a wide range of physical, cognitive or
psychosocial issues requiring considerable rehabilitation
(see also �Ag�ard et al. 2012, 2014).
Typically, the prospect of the patient’s final recovery was
unclear to the spouses, particularly in the early phases of con-
valescence, causing uncertainty about their future lives. A wife
said: ‘Where will it end and what will the result be? How
much will our lives change?’ (Spouse 7; 3-month interview)
From spouse to caregiver and back
The main concerns of the spouses were to promote progress
in the patient’s recovery while simultaneously keeping the
couple’s practical and social lives together. The spouses
resolved their concerns by shifting roles from spouse to care-
giver and back, which was identified as the core category of
the study. The spousal role shifts progressed in a dynamic
process initially triggered by the critical illness incident and
later influenced by the patient’s gradual recovery. The role
shifts involved four elements: (1) committing to caregiving;
(2) acquiring caregiving skills; (3) negotiating level of care-
giving and (4) gradually leaving the caregiver role. Spousal
caregiving comprised five dimensions: observing, assisting,
coaching, advocating and managing activities (Figure 2).
Committing to caregiving
Commitment to the task was a fundamental vehicle for
spouses to take on the caregiver role. The spouses felt
responsible for the recovery of the patient, and the couples’
household and daily life together. Some spouses immedi-
ately committed themselves to caring for the patient and
took on an active role, while others were more hesitant or
insecure about how to act. One spouse, unable to deal with
the patient’s illness, left home for some time but later
returned, committed to stay and care for her partner.
Acquiring caregiving skills
The spouses had no special caregiving experience prior to
the patient’s illness. When asked how they coped, they all
responded in a similar fashion: ‘We take things as they
come.’ If hesitant in the initial phase of recovery, as the
© 2015 John Wiley & Sons Ltd 1895
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE Post-ICU spousal caregiving
T a b le
1 P a rt ic ip a n t p ro fi le .
S p o u se -r el a te d d a ta
P a ti en t- re la te d d a ta
ID A g e
S ex
P re -I C U
em p lo y m en t*
P o st -I C U
em p lo y m en t*
S ic k le a v e
F /T
(d a y s)
S ic k le a v e
P /T
(d a y s)
C h il d re n
li v in g
a t h o m e
D is ta n ce
to IC
U †
D is ta n ce
to
h o sp it a l†
D is ta n ce
to
re h a b .f a ci li ty
†
A d m is si o n
ty p e
A g e
IC U
L o S
(d a y s)
H o sp it a l
L o S (d a y s)
R eh a b
L o S
(d a y s)
1 3 3
F 3 7
3 7
7 0
1 1 5 5
7 5
– T ra u m a
3 5
1 1
1 2
–
2 3 9
M 3 7
3 7
1 7
7 2
1 2 7
2 –
N eu ro
3 9
1 0
1 3
–
3 4 2
M 3 7
3 7
1 0
0 1
3 5
3 5
– C a rd ia c
4 0
5 8
–
4 3 9
M 3 7
3 7
4 2
1 2 8
3 1 4
1 4
3 4
G a st ri c
4 0
6 7
8 1 0 6
5 3 0
F U E
U E
U E
U E
– 3
3 2 6
N eu ro
4 0
1 0
6 2 1
6 4 3
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3 7
7 2 1
1 3
3 2 9
P u lm
o n a ry
4 5
7 3
4 7
1 1 9
7 5 5
F 2 0
U E
1 4 6
0 –
3 5
1 0
3 0
N eu ro
5 0
2 2
3 1 6
8 4 8
F 3 3
3 3
3 4
0 1
3 0
3 0
– T ra u m a
5 3
1 1
9 –
9 5 8
M 3 7
3 7
2 1
0 1
1 2 7
1 2 7
2 N eu ro
5 5
9 2
4 8
1 0
7 3
M R et
R et
R et
R et
– 1 1 0
7 2
– P u lm
o n a ry
5 8
1 0
3 7
–
1 1
5 7
F 3 7
3 7
2 5
1 0 6
– 1 1
1 1
1 0 6
N eu ro
6 0
1 2
6 5 7
1 2
5 8
F 3 2
3 2
3 5
0 –
6 3
1 6
– T ra u m a
6 3
1 1
4 2
–
1 3
6 0
F 3 7
R et
7 5 1
– 5 9
5 9
4 0
T ra u m a
6 4
5 1
7 1 7 4
1 4
6 2
F 3 7
3 7
9 0
– 4 7
1 5
2 1
C a rd ia c
6 7
7 4
7 2 7
1 5
6 6
F R et
R et
R et
R et
– 8 7
3 8
– C a rd ia c
6 8
7 1 6
–
1 6
6 0
F 3 7
3 7
0 7 2
– 8 7
8 7
9 3
T ra u m a
6 8
2 1
3 5 5
1 7
6 6
F R et
R et
R et
R et
– 1 0
1 0
1 0
M ed ic a l
7 0
8 6 3
1 5
1 8
7 2
M R et
R et
R et
R et
– 4
4 –
G a st ri c
7 0
1 1
2 0
–
* E m p lo y m en t in
h o u rs /w
ee k .
† D is ta n ce
in k m .
L o S , le n g th
o f st a y ; R et , re ti re d ; U E , u n em
p lo y ed ; F /T , fu ll ti m e (3 7 h o u rs /w
ee k ); P /T , p a rt
ti m e (< 3 7 h o u rs /w
ee k ).
1896 © 2015 John Wiley & Sons Ltd
A.S. �Ag�ard et al.
spouses gradually recognized the patient’s care needs, most
developed the caregiving skills necessary in a learning-by-
doing process. Spouses described caregiving skills involving
physical, psychological, social and pedagogic elements
related to immediate and anticipated future challenges. To
identify their caregiving tasks, they sought information by
observing and listening to the patient, from healthcare pro-
fessionals, family and friends and the Internet.
Spouses generally demonstrated resourcefulness in care-
giving. They described rewarding feelings when they were
able to provide effective solutions to the multifaceted chal-
lenges in everyday life. Also, they sometimes experienced
renewed feelings of connectedness to their partner. How-
ever, some spouses struggled to manage and would have
appreciated more formal support acquiring the necessary
skills and navigating the health care and social systems,
which were often referred to as a maze:
Suddenly I got a lot of responsibilities, things I had never tried and
I just didn’t know what to do. It’s easy to make mistakes and
nobody else was there. Everything was up to me and it was really a
burden. If I had only had some instructions or a contact person or
someone who said: ‘Listen, I will take care of this.’ I have a differ-
ent role here. I have to fill many roles at the same time and be
‘husband and wife, caregiver or lover,’ or whatever we call it – I
just don’t have the energy, because there are so many loose ends
here. (Spouse 4; group interview)
Only one spouse was offered assistance from a social worker
in the community. The majority of the spouses received help
and support from family and friends. Some spouses provided
extensive care, while others had a lighter load.
Negotiating the level of caregiving
As the patient gradually recovered, the spouse encouraged the
patient to take over more tasks. Spouses engaged a type of
feedback mechanism, through which they continuously
evaluated the patient’s ability to manage, level of confidence
in doing things independently, ability to be alone and willing-
ness to take over. If the patient regained the ability to perform
a given task, the spouse would accordingly withdraw assis-
tance. Sometimes the patient needed prodding; at 12 months
a spouse humorously stated: ‘Now he thinks that it is easier if
I do things for him; he has become lazy.’ In another case the
spouse discovered he had gone too far, when his wife finally
told him to ‘back off’ and let her do things herself.
Leaving the caregiver role
According to the patient’s developing functional capability,
the spouse was able to let go of the caregiver role, gradu-
ally resuming the previous role of spouse. During the course
of patient recovery, spousal needs for independence and
respite grew. They missed doing things on their own, with
friends and family, or just being alone in the house for a
while. Furthermore, they longed to be a spouse again.
Except for the people with major physical or cognitive
issues, the recovery of the patient allowed the spouse to
gradually leave the role as caregiver. For the more chal-
lenged people, there might still be a chance of recovery
after 12 months. Their spouses, however, anticipated the
ongoing need for assistance and gradually realized more
permanent changes to their spousal role.
Dimensions of spousal caregiving
Five dimensions of spousal caregiving were identified in this
study: observing, assisting, coaching, advocating and man-
aging activities.
Observing
Care and support were based on continuous patient obser-
vation. Spouses looked for signs of recovery, stability or
setbacks. A wife described the first weeks at home:
Acquiring caregiving skills
Commuitting to spousal caregiving
Dimensions of caregiving
Leaving the caregiver role
Negotiating level of caregiving
• Observing the patient • Assisting the patient • Coaching the patient • Advocating for the patient • Managing activities
Figure 2 From spouse to caregiver and back.
© 2015 John Wiley & Sons Ltd 1897
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE Post-ICU spousal caregiving
That day I just didn’t know what to do. He sat there unable to do
anything. He was so weak and I finally thought: ‘What should I do? I
am not a nurse.’ It was awful. I finally called the doctor and asked
him to come as fast as possible. (Spouse 15; 3-month interview)
In some cases, the patient and spouse did not agree on
their assessment of the patient’s situation:
He says that he hasn’t suffered permanent damage, but it just isn’t
true. He has lots of problems, but not physical. I mean, invisible
things that have changed. (Spouse 7; 3-month interview)
After a year, some patients still required observation. A
husband said:
The three of us in the family are home and observe her all the time;
if she has a bad day, worse than usual, we are much more alert.
(Spouse 2; 12-month interview)
The quotes exemplify how the spouses were continuously
prepared to shift their roles.
Assisting
After ICU discharge, spouses provided care and assistance
at the general ward, rehabilitation facility and at home.
One wife said:
I spent a lot of time at the hospital [after ICU] and we walked
down the halls. At first he walked pushing the wheel chair and
took a seat when he needed to. Then we used the walker, just a
short distance and back. That’s how we trained. (Spouse 17; 3-
month interview)
At home, spouses were resourceful in providing a stable
environment, facilitating the patient’s recovery and ability
to manage in the home. One spouse moved the bedroom
from upstairs to the ground floor. Another spouse installed
an exercise bicycle and a third had a handrail mounted by
the staircase.
In the initial phase of the patient’s recovery, spouses took
sole responsibility for varied household activities, such as
cooking, cleaning, caring for a litter of puppies, gardening
or accounting. At times, this could be demanding, particu-
larly if the spouse was working:
It takes so much time. I do it every time. I had to go to the airport
the other day, you know. Then we need some milk. Then the car
needs a check-up. I have to go again . . . every time. Food . . . I have
to shop and cook each day. (Spouse 11; 3-month interview)
Typical tasks of daily life were providing the patient with
a balanced diet, giving medication reminders and assisting
with personal care. Also, most transportation was handled
by the spouse.
Visits to the hospital often required long and frequent
commutes (see Table 1). This was particularly stressful for
working spouses who had little time for rest or being on
their own. For couples with children living at home, balanc-
ing the needs of the patient, spouse and children was a
demanding task. A husband explained:
I went home after work to pack some clothes for the kids. I threw
some clothes in the washer, fed the kids and packed for the next
day. Then I dropped off the kids [with family] and drove to the
hospital [125 kilometers]. On the way I made sure that the friends
that visited my wife at the hospital the next day were able to bring
the kids. So the kids only went to the hospital every other day. But
it was important for them and for my wife that they went. (Spouse
2; 3-month interview)
A retired spouse illustrated the differences in post-ICU
situations between younger and older couples:
It is easier for us old folks without children to arrange things. We
have only each other to consider and can doing things at our own
pace. (Spouse 15; group interview)
Coaching
Encouraging continued progress in the patient’s rehabilita-
tion was a central element in the spouse’s efforts to gradu-
ally leave the caregiver role. A wife became exasperated
with her husband’s lack of initiative:
I couldn’t get him to go to rehab. He just sat on the couch and
stared out the window. I couldn’t just sit and watch how he had
fought at the hospital and then just faded away. So, I said that
either he would pull himself together and take a walk, or I would
go to the summer house and he would have to manage on his own.
I was so angry that I cried. But then he got up and walked to the
beach and back. The day after, he came along with me twice.
(Spouse 8; 12-month interview)
Praise was used more than prodding to inspire continu-
ous training.
Advocating
Spouses advocated for the patient at all stages of the trajectory.
When the patient was transferred from the ICU, some spouses
worried whether patients would receive the necessary attention
and care on the ward. Some spouses felt they had to stay with
the patient to make sure everything was okay. A spouse who
felt the respite care provided was not sufficient for her husband
had him transferred home to look after him herself.
Advocating for sufficient physical or neuropsychological
rehabilitation was central to a spouse’s efforts throughout
convalescence:
1898 © 2015 John Wiley & Sons Ltd
A.S. �Ag�ard et al.
I called the hospital and said that I didn’t see any progress with my
husband and I was afraid that he would become depressed. Noth-
ing happened. After 3 months there was no progress. (Spouse 15;
at 12-month interview)
Most of the spouses had sole responsibility for contact
with the health care or social systems during the early
phase of convalescence. In some cases, a spouse consulted
the patient’s GP for advice, but the GP seemed to have no
coordinating role during convalescence. Advocating for the
patient required resourcefulness and perseverance and in
some cases a spouse almost gave up:
It was frustrating to discover that things got lost in the system. I
discovered that there were other options, but they were dead ends
as well. Then what to do next? You lean back and say: Okay, it
will just have to go as it goes. You just give up and let things go at
their pace. (Spouse 3; at 12-month interview)
Spouses were often frustrated trying to figure out the sys-
tem and struggled to find the right people to help during
convalescence.
Managing activities
As some of the ICU survivors had trouble keeping track of
time, appointments or other activities, their spouses would
often keep a calendar or datebook. Taking charge of the
couple’s social life was another element in the managing
role. Even if visits from family and friends were generally
welcomed, in the early stages of convalescence the spouse
tried to protect the patient by reminding family and friends
to keep visits short or by asking them to send text messages
or e-mail instead of visiting. The couples appreciated the
support provided from adult children or from other family
and friends. Sometimes, there could also be a burdensome
side to the assistance provided by others:
Both family and friends have been very good at visiting, writing
and calling. But now as time goes on we don’t have the energy to
return their favors. (Spouse 9; at 3-month interview)
Both patients and spouses were generally happy to see
family or friends for short visits or to keep in touch on the
phone.
Discussion
This study offers a detailed view of spouses’ efforts to shift
roles from spouse to caregiver and back during the first
year after ICU discharge. The findings highlight post-ICU
caregiving as a dynamic process and illustrate the multifac-
eted and vital assistance provided by spouses throughout
convalescence.
For the past two decades, extensive research has been
conducted examining caregiving and the caregiver role in
clinical areas such as Alzheimer’s disease, dementia, stroke
and cancer. A growing interest in the processes involved in
caregiving has resulted in studies of entry and exit periods
of caregiving and outlined caregiving as a role-making pro-
cess that parallels the dimensions described in the present
study (Schumacher 1995). Some ICU survivors suffered
from chronic impairments after their critical illness, while
other patients were expected to recover. Thus, post-ICU
caregiving may share some characteristics of caregiving in
other clinical areas.
Spousal role changes have been described in other studies
of ICU patients (Johnson et al. 2001, Johansson et al.
2004, Cox et al. 2009), and other groups of people such as
those with Parkinson’s disease (Hounsgaard et al. 2011,
Haahr et al. 2013), cancer (Thomas et al. 2002), traumatic
brain injury (Engstr€om & S€oderberg 2011), heart condi-
tions (Egerod & Overgaard 2012), chronic illness (Eriksson
& Svedlund 2006) or other health problems (Levine 2004,
Pereira & Rebelo Botelho 2011). This suggests that spousal
role shifts along the continuum of recovery is a general fea-
ture of spousal caregiving.
A study of informal cancer care summarized nine catego-
ries of caregiving and caregiver skills: monitoring, interpret-
ing, making decisions, taking action, making adjustments,
accessing resources, providing hands-on care, working
together with the ill person and negotiating the healthcare
system (Schumacher et al. 2000). Their study reveals multi-
ple caregiving dimensions and the evolving nature of care-
giving and caregiver skill acquisition, similar to the findings
of this study. This convergence adds to the trustworthiness
and transferability of our findings.
The study group of cohabiting spouses provided diversi-
fied, individualized care that has been shown to improve
physical and mental health (Ross et al. 1990), by assisting
patient adherence to treatment and training regimens and
providing early detection of physical or mental deteriora-
tion. The spousal focus on support and encouragement
probably also increased the patient’s emotional well-being.
Schumacher et al. (2000) described similar types of caregiv-
ing in a mixed group of spouses and other family members,
suggesting that marriage in itself is not the determining ele-
ment and pointing instead to other factors, such as the
commitment of the caregiver and the ability to acquire nec-
essary skills.
Spouses reported rewarding feelings when they were able
to provide effective and sustainable solutions to the chal-
lenges they faced. Also, they sometimes experienced
renewed feelings of connectedness to their ill partner show-
© 2015 John Wiley & Sons Ltd 1899
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE Post-ICU spousal caregiving
ing that caregiving can be a difficult yet rewarding experi-
ence. In the first 12 months of post-ICU recovery, spouses
shared the hope of further patient recovery, which might
also have affected the caregiving experience. Former ICU
patients may experience more emotional effects of critical
illness after physical recovery is achieved (Ringdal et al.
2010). This could be related to the initial hopefulness about
recovery and the eventual realization of loss of function or
potential, with the resulting development of emotional
problems (Rattray & Hull 2008). A similar process may be
found in spouses and studying their situations beyond the
first 12 months would provide insight into this area.
The spouses generally appeared optimistic, even when
recovery was slow. Many hoped for a future similar to their
life prior to critical illness. In contrast, literature on the
subject of caregivers of patients with known chronic condi-
tions reports that they anticipate continued or still more
demanding caregiving responsibilities, causing feelings of
helplessness, depression, anxiety or sorrow (Rossheim &
McAdams 2010, Davis et al. 2011). A few of the spouses
in this study expected they would have to continue support-
ing the patient physically, cognitively or socially beyond the
12-month study period. Consequently, there was uncer-
tainty as to their future spousal role and some of them
described carrying a heavy burden. These spouses could be
at risk of experiencing helplessness or depression.
In spite of potential positive effects on spousal relation-
ships, the study shows that spousal caregiving after dis-
charge from the ICU can be a challenging task requiring
commitment, skills and endurance. Providing care to an
ICU survivor may exceed the resources of many lay per-
sons. Not all study participants immediately committed
themselves to caregiving, which is an indication of their
struggle to cope in the context of post-ICU recovery. Previ-
ous studies have reported high levels of caregiver burden
and distress after discharge from the ICU (Im et al. 2004,
Azoulay et al. 2005, Van Pelt et al. 2007, 2010, Choi et al.
2011). Our study provides new insight into the vital role of
spousal caregivers and adds background information to
these previous reports of burden and distress. The study
identified spousal caregiving as a process involving several
potentially critical points, which could be the focus of inter-
ventions to assist spouses in their caregiving efforts. Care-
giver resources may be assessed using validated instruments
evaluating e.g. self-efficacy or coping style.
The spouses in this study did not seem particularly con-
cerned about their financial situation. The Danish welfare
system provided financial security for participants during
the study period. However, after the first year, some of the
benefits might be considerably reduced, perhaps causing
financial problems. In contrast, caregivers in other countries
have reported financial concerns (Swoboda & Lipsett 2002,
Rossheim & McAdams 2010, The Princess Royal Trust for
Carers 2010), which most likely influences the entire care-
giving experience. Consequently, the socioeconomic context
of post-ICU convalescence should be considered when inter-
preting the impact of critical illness on both patients and
spouses.
In spite of narrow criteria for inclusion, the characteris-
tics of the ICU survivors varied considerably. Across this
broad range of characteristics, concurrent patterns of con-
cerns and behaviour were revealed, increasing the scope of
the theory. We believe the theory is relevant to providers of
health care and social services striving to support ICU sur-
vivors and their spouses in the first year of convalescence.
Limitations
The study has some limitations. Study participants were
spouses of patients struck by acute critical illness and intu-
bated for more than 4 days. Other patients in the ICU are
less critically ill and have a shorter stay, perhaps without
intubation. Also, patients with chronic conditions prior to
ICU admission were excluded, eliminating perhaps spouses
with prior caregiving experience from the sample. Conse-
quently, findings cannot be extrapolated to the general
post-ICU caregiver population.
Of the 33 couples consecutively invited to participate in
this study, 18 accepted the invitation. Considering the bur-
densome situation described by the participating patients
(�Ag�ard et al. 2012, 2014) and spouses, this acceptance rate
is not surprising. No patterns were found in the discrepan-
cies between participants and non-participants in terms of
reason for hospital admission, length of stay or demo-
graphic characteristics. The characteristics and consider-
ations of the study group varied considerably and it is
expected that the challenges they faced reflect the experi-
ences of many post-ICU spousal caregivers.
Conclusion
This study offers detailed insight into the everyday chal-
lenges of caregiving facing spouses of ICU survivors during
the first 12 months after ICU discharge. We describe ‘Shift-
ing their role from spouse to caregiver and back’ as the core
process through which the spouses addressed their main
concern, promoting patient recovery, while keeping the
couples’ practical and social lives together. The spousal role
shifts occurred in a dynamic process involving four ele-
ments: committing to caregiving, acquiring caregiving skills,
1900 © 2015 John Wiley & Sons Ltd
A.S. �Ag�ard et al.
negotiating level of caregiving and gradually leaving the
caregiver role. Post-ICU caregiving was constituted by
patient observation, assistance, coaching, advocating and
managing activities. Describing some of the mechanisms
involved in post-ICU caregiving, the study provides a con-
textual backdrop to previous reports of burden in caregiv-
ing spouses. The findings highlight the vital support
provided by spouses and their active role throughout the
recovery process. However, the role of society in supporting
informal caregivers after hospital discharge and identifica-
tion of specific relevant interventions needs further atten-
tion. We encourage hospital staff members and primary
care health professionals internationally to involve spouses
and provide focused information and support for them
throughout hospital admission and recovery.
Acknowledgements
We are grateful to the participating spouses for sharing
their experiences of life after ICU. Also, we thank the ICU
staff who facilitated the collection of data.
Funding
The study was supported by The Novo Nordisk Foundation
(grant numbers R154/A12445, R167/A13995), The Health
Insurance Foundation (grant number 220B163), The Danish
Nurses’ Organization (grant number 2009), The Aase and
Ejnar Danielsen Foundation (grant numbers 106733, 10-
000059), The Lundbeck Foundation (grant number FP32/
2009) and The Central Jutland Region (grant number 1-45-
72-1-08).
Conflict of interest
The authors and the funders have no financial or personal
relationships that could inappropriately influence this work.
Author contributions
AS�A, KL, ET, IE contributed in the conception and design
of the study; AS�A collected all the data; AS�A and KL
drafted the manuscript; AS�A, KL, ET, IE revised and con-
tributed to the final manuscript.
All authors have agreed on the final version and meet at
least one of the following criteria [recommended by the IC-
MJE (http://www.icmje.org/ethical_1author.html)]:
• substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data;
• drafting the article or revising it critically for important intellectual content.
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