Journal of Critical Care 30 (2015) 242–249

Contents lists available at ScienceDirect

Journal of Critical Care

journal homepage: www.jccjournal.org

Changing support needs of survivors of complex critical illness and their

family caregivers across the care continuum: A qualitative pilot study of
Towards RECOVER☆
Anna I. Czerwonka, BSc a, Margaret S. Herridge, MD, MPH b,c, Linda Chan, BASc a,b, Leslie Michele Chu, BSc b,
Andrea Matte, BSc b, Jill I. Cameron, PhD a,d,⁎
a
Department of Occupational Sciences and Occupational Therapy, University of Toronto, Toronto, ON, M5G 1 V7, Canada
b
University Health Network, NCSB 11C-1180, Toronto, ON, M5G 2 N2, Canada
c
Department of Medicine, University of Toronto, Toronto, ON, M5G 2C4, Canada
d
University Health Network- Toronto Rehabilitation Institute, Toronto, ON, M5G 2A2, Canada

a r t i c l e i n f o a b s t r a c t

Keywords: Introduction: Survivors of complex critical illness and their family caregivers require support during their recov-
Family caregiver ery, rehabilitation, and return to community living; however, the nature of these supports and how they may
ICU change over time remain unclear. Using the Timing It Right framework as a conceptual guide, this qualitative
Critical illness
pilot study explored survivors' and caregivers' needs during the episode of critical illness through their return
Qualitative
to independent living.
Long term mechanical ventilation
Outcomes
Methods: Five survivors and seven family caregivers were recruited and consented from the main Towards
RECOVER pilot study, designed to characterize the long term outcomes of survivors of the ICU who have been me-
chanically ventilated for more than one week. Using the Timing It Right framework, we prospectively conducted
qualitative interviews to explore participants' experiences and needs for information, emotional support, and train-
ing at 3, 6, 12, and 24 months after intensive care unit (ICU) discharge. We completed 26 interviews, which were
audio recorded, professionally transcribed, checked for accuracy, and analyzed using framework methodology.
Results: In this small pilot sample, caregiver and patient perspectives were related and, therefore, are presented to-
gether. We identified 1 overriding theme: survivors do not experience continuity of medical care during recovery
after critical illness. Three subthemes highlighted the following: (1) informational needs change across the care
continuum, (2) fear and worry exist when families do not know what to expect, and (3) survivors transition
from dependence to independence.
Conclusions: Interventions designed to improve family outcomes after critical illness should address both survivors'
and caregivers' support needs as they change across the illness and recovery trajectory. Providing early intervention
and support and clarifying expectations for transitions in care and recovery may decrease fears of the unknown for
both caregivers and survivors. Ongoing family-centered follow-up programs may also help survivors regain inde-
pendence and help caregivers manage their perceived responsibility for the patients' health. Using these insights
for intervention development could ultimately improve long-term outcomes for both survivors and caregivers.
© 2014 Elsevier Inc. All rights reserved.

1. Introduction caregivers to inform family-centered interventions, which may improve

The support needs for survivors of complex critical illness and their
caregivers may change as survivors transition from the intensive care
unit (ICU) to the step-down or general ward; rehabilitation; and, ulti-
mately, the home environment [1]. There is significant interest in un-
derstanding the experiences and needs of survivors and their family
☆ Trial registration: Clinicaltrials.gov NCT00896220.
⁎ Corresponding author.
E-mail addresses: anna.czerwonka@utoronto.ca (A.I. Czerwonka),
margaret.herridge@uhn.on.ca (M.S. Herridge), linda.chan@uhn.on.ca (L. Chan),
leslie.chu@uhn.on.ca (L.M. Chu), andrea.matte@uhn.on.ca (A. Matte),
jill.cameron@utoronto.ca (J.I. Cameron).
patient and caregiver outcomes. To gain insights into the complexity of
issues after an episode of critical illness, qualitative research may be
used [2,3]. Qualitative studies with ICU survivors and their family care-
givers have primarily examined needs during the ICU stay, relocation
stress experienced while transitioning from the ICU, and posttraumatic
stress disorder [4,5]. These studies suggest that relocation stress may be
minimized by addressing practical causes such as communication issues
experienced by survivors who have had a tracheostomy and nursing
care that is more sensitive to survivors' specialized needs [4,5], whereas
posttraumatic stress disorder can be reduced by decreasing the patient's
distress and fear and lessening the impact of ICU stressors while main-
taining a calm environment [5]. One study exploring the needs of ICU
survivors with acute respiratory distress syndrome (ARDS) beyond

http://dx.doi.org/10.1016/j.jcrc.2014.10.017
0883-9441/© 2014 Elsevier Inc. All rights reserved.
 A.I. Czerwonka et al. / Journal of Critical Care 30 (2015) 242–249
the ICU transition phase found that needs for information and support
changed from the early ICU stages through survivors' adjustment to
life at home [1]. Qualitative research with ICU survivors in the UK [6]
suggests that follow-up services contributed significantly to their phys-
ical, emotional, and psychologic recovery. Survivors valued the continu-
ity in care, including being monitored, receiving referrals to specialists,
and receiving reassurance from ICU staff, whom they considered to be
experts on their condition [6].
Research has also begun to qualitatively explore the experiences and
needs of family caregivers to ICU survivors. During the survivors' ICU
stay, receiving information from the health care team is crucial for family
caregivers [7-9]. Despite this, much of the information desired by family
members when making decisions is not provided, in particular, informa-
tion about expected care needs and prognosis [10]. Some studies have
begun to highlight the complex interdependency of ICU survivors and
their family caregivers [11,12]. Caregivers discussed a lack of support
from health care professionals post-ICU [12] and the importance of cop-
ing strategies to deal with the new disability [13]. Specifically, caregivers
to ARDS survivors discussed experiencing relationship strains [11,12].
To date, research examining and addressing survivors' and family
caregivers' needs for support has emphasized these needs at specific
points in the care trajectory (eg, acute care or rehabilitation). Limited in-
vestigation has explored the long-term needs of ICU survivors and fam-
ily caregivers and how these needs interact and change across the
illness and recovery trajectory, especially during inpatient rehabilitation
and the first years back in the community. In order to understand the
changing needs and experiences of ICU survivors and their family care-
givers, our group has adopted the Timing It Right (TIR) framework [14].
This framework suggests that survivors and their family caregivers
move through specific phases of recovery over time and that these
phases are associated with specific needs for support [14]. Although
the framework was initially developed for the stroke population, it has
been adapted for the critical illness experience because its central pre-
mise that needs change over time as patients transition from an acute
care experience, through rehabilitation, and return to community living
is also valid for the critical illness population. Stroke and critical illness
are similar in that they are associated with the sudden onset of illness
followed by longer term recovery [1]. This TIR framework, as previously
adapted to the critical illness experience [1], includes the following
phases: (1) the critical illness event and ICU care, (2) period of stabiliza-
tion on the general ward, (3) preparation for return to community liv-
ing, (4) first few months of home adjustment, and (5) longer term
adjustment to community living. The TIR framework considers 4 key el-
ements of social support at each consecutive phase across the care con-
tinuum: emotional (eg, providing comfort or listening to problems),
instrumental (eg, providing training in problem solving), informational
(eg, providing information about illness and services), and appraisal
support (eg, providing feedback about their care-giving activities)
[15]. The central aim of this framework is to determine and provide
families with support that is specific to the phase of recovery and, there-
by, minimize the occurrence of negative outcomes (eg, stress, caregiver
burden, or depression) [14].
Phase 1 Phase 2 Phase 3
Preparation for
Ward
ICU Care Discharge
Care
Home
Event Stabilization Preparation
Fig. 1. Phases of the TIR framework, adapted to ICU survivors. The TIR framework suggests that survivors and their family caregivers move through specific phases of recovery and that
these phases are associated with specific needs for support. At each phase, key elements of social support are considered, and the central aim is to determine and provide families with
support that is specific to the phase of recovery and, thereby, minimize the occurrence of negative outcomes.
243
To meet the long-term needs of ICU survivors and their family care-
givers, we must first characterize those needs across the care continu-
um. The objective of this qualitative pilot study was to delineate the
needs and experiences of survivors of complex critical illness and their
family caregivers across the illness and recovery trajectory using the
TIR framework as a guide. Findings from this study will inform a larger
scale qualitative exploration of ICU survivors and their family caregivers.
2. Materials and methods
2.1. Setting and participants
This study was part of the longitudinal Towards RECOVER pilot study
conducted at 2 university-affiliated medical-surgical ICUs. The patients'
usual course of medical care included being admitted to the ICU; being
mechanically ventilated; having mechanical ventilation removed; mov-
ing to a step-down ward or general ward; and, ultimately, returning
home. Although not typical, some patients receive care post-ICU
through inpatient or outpatient rehabilitation and/or home care ser-
vices. Support for families is not standard clinical practice, nor are ICU
follow-up services. Survivors were eligible for enrollment if they were
at least 16 years of age and mechanically ventilated for a minimum of
7 days. Survivors were excluded if they were nonambulatory before
ICU admission; had a catastrophic neurologic injury in the opinion of
the attending intensivist; or had a preexisting neuromuscular disease
or history of psychiatric admission. We included family caregivers
who were primarily responsible for providing and/or coordinating any
necessary assistance to the survivor without financial compensation
and were at least 18 years of age. All participants had to read and
speak English. We recruited a convenience sample from the Towards
RECOVER pilot cohort to participate in the qualitative interviews. We
interviewed caregiver-survivor dyads as well as survivors who did not
have caregivers and caregivers whose survivor was not able or interest-
ed in participating.
2.2. Design and data collection
In-depth qualitative interviews were conducted individually with
either the survivor or caregiver. We used a semistructured interview
guide, based on the TIR framework, which asked open-ended questions
focused on individuals' experiences and needs for informational, instru-
mental, emotional, and appraisal support over the phases of the TIR
framework (Fig. 1). The interview guide asked participants about the
support they received and desired for each phase of the adapted TIR
framework. We also explored how they received the support or how
they would like to receive it in the future. Interviews were conducted ei-
ther in person or over the telephone because research shows that the
quality of an interview is not affected by the mode of conduct [16,17].
Each participant was interviewed multiple times during the study
with the aim of having the qualitative interviews parallel the timing of
the quantitative assessments of the pilot study (approximately 7 days,
3, 6, 12, and 24 months post-ICU discharge). First and subsequent
Phase 4 Phase 5
Late
Early Home
Community
Adjustment
Adjustment
Implementation Adaptation
244 A.I. Czerwonka et al. / Journal of Critical Care 30 (2015) 242–249

Table 1 4 cases: Caregiver only (Cg 1,2,3,4)

Sample interview questions

Patient 3 cases: Patient only (Pt 5,6,7)

Can you tell me about the transition from the intensive care unit to the general 9 cases
ward? What was that like for you? 1 case: Pt-Cg-Cg (Pt 8, Cg8a, Cg8b)
Prompts:
a. How where you feeling physically and emotionally?
b. What were you able to do or not do on your own? 1 case: Pt-Cg (Pt 9, Cg 9)
c. What information training or support did you receive? How? Was it helpful or
unhelpful? Why?
Fig. 2. Summary of who was interviewed in each of the 9 cases explored. Each case repre-
d. Please tell me about your unmet needs for information, training, and/or support
sents a separate incidence of complex critical illness. The participants represent a conve-
at this time. How and where would you have liked to receive this information,
nience sample from the Towards RECOVER pilot cohort, and as such, we interviewed
training, and/or support?
caregiver-survivor dyads as well as survivors who did not have caregivers and caregivers
whose survivor was not able or interested in participating.
Family caregiver

Can you tell me about your experience when you first brought your family
member/significant other home, what was it like for you?
Prompts:
a. What types of things did your family member have difficulty with?
b. What information training or support did you receive? How? Was it helpful or
unhelpful? Why?
c. Please tell me about your unmet needs for information, training, and/or support
at this time. How and where would you have liked to receive this information,
training, and/or support?
interviews followed the same structure to give participants a chance to
discuss their earlier experiences and how their experiences changed
over time, with later interviews capturing longer term experiences. See
Table 1 for sample interview questions. Interviews were conducted until
theme saturation was approached or achieved. Interviews were digitally
recorded, professionally transcribed verbatim, and reviewed for accuracy.
Institutional research ethics boards approved the study protocol.
familiar with the data independently reviewed the transcripts and
made modifications to the first codebook. The final codebook was
reviewed and revised by both authors until consensus was reached. Sur-
vivor and caregiver interviews were initially analyzed separately to
identify any experiences unique to each group; however, as there was
little variability between the survivors' or caregivers' perspectives in
this small sample, themes were generated from all the interviews as a
whole. Multiple interviews at various time points from each participant
were combined and analyzed as a whole. Each code was reviewed over
the phases of the TIR framework to determine if they varied across time
(eg, were emotional support needs the same across the phases or did
they change over time?). Themes were generated independently by 2
authors, discussed until a consensus was reached, and verified by a
third author who was familiar with the data.
3. Results

2.3. Data analysis 3.1. Participants

Interviews were analyzed using framework methodology [18,19]. Five ICU survivors and 7 family caregivers were interviewed at vari-
This involves (1) familiarizing with content by listening to the inter- ous points in time post-ICU. Characteristics of the participants and
views and reviewing the transcripts, (2) identifying a thematic frame- timing of the interviews are summarized in Table 2. In total, 9 different
work (ie, TIR framework), (3) coding the data according to the cases were explored wherein 1 to 3 people were interviewed per
framework, (4) charting the data on the framework, and (5) interpreta- case. Fig. 2 provides a description of the cases and demonstrates
tion [18,19]. Three authors contributed to the data analysis while keep- whose opinions are presented in these results. After speaking with care-
ing an audit trail to ensure credibility of results and to decrease the givers and patients at the 7-day post-ICU quantitative assessment for
chance of individual biases influencing the research [20,21]. We used the Towards RECOVER pilot and interviewing 1 patient at the 7-day
QSR NVivo 2 qualitative software (Doncaster Victoria, Australia) to post-ICU discharge time point, we decided to omit further 7-day inter-
organize the coded data [22]. views as participants appeared too overwhelmed by the emotional trau-
One author read the transcripts from all time points and developed a ma that they had just experienced. After 6 months post-ICU discharge,
codebook based on the TIR framework and on common categories aris- we lost 2 survivor and 2 caregiver participants from the study due to
ing from the interviews (eg, phase 1 emotional support, phase 2 emo- survivor death; interviews conducted before the death are included in
tional support, etc). As the analysis proceeded, if it became apparent this analysis. In total, 26 interviews were completed, with a median
that specific phases were not discussed or additional phases emerged, length of 23 minutes (range, 12-52 minutes).
the framework would be adapted to reflect the data. A second author
3.2. Overall themes
Table 2
Baseline characteristics of interviewees and number of interviews completed We identified 1 overriding theme and 3 subthemes (see Fig. 3),
which are described in detail below. Each theme demonstrates how ex-
ICU survivors Family caregivers
periences and needs of families changed over the 5 phases of the TIR
(n = 5) (n = 7)
framework as patients moved out of the ICU and back to the community
No. of female 2 6
during the first 2 years post-ICU discharge. Fig. 3 presents illustrative
No. of ≥50 years old 4 2
Survivor APACHE II scorea 24 (17-30) 17 (9-33)b quotations that include the phase of the TIR framework being discussed
Length of ICU stay (d) a 24 (10-61) 29 (10-64)b during the interview. The multiple interviews at various time points
Survivor attended inpatient rehabilitation 2 2b helped capture experiences before and after the transition home and
No. of interviews 12 14 over the first 2 years post-ICU discharge.
Time post-ICU discharge: 7d 1 0
3 mo 4 3
6 mo 3 6 3.3. Overriding theme: Survivors do not experience continuity of medical
12 mo 2 4 care during recovery after critical illness.
24 mo 2 1
a
Median value (range). Many participants commented that there was little continuity in the
b
Values are for the caregiver's related ICU survivor. health care professionals who provided care to them across the various
 A.I. Czerwonka et al. / Journal of Critical Care 30 (2015) 242–249 245

Fig. 3. Overriding and subthemes with illustrative quotations. We identified 1 overriding theme and 3 subthemes representing patients' and families' experiences and needs from patients'
ICU admission to 2 years post-ICU discharge. Changes in survivors' and caregivers' experiences over time were captured in the phases of the TIR framework. In the figure, each quotation is
followed by a quotation number, caregiver or patient identification number, and phase of the TIR framework that the quotation is referring to.

care environments (eg, ICU to general ward). Generally, both survivors
and their caregivers felt that the level of attention from health care pro-
fessionals was the highest in the ICU and the lowest in the community,
where many participants discussed receiving no follow-up from a
health care professional. Participants were very satisfied with the care,
information, and support they received in the ICU. After an ICU stay,
the care that patients received varied. As a result, survivors and care-
givers felt that their needs were not well understood by health care
staff outside the ICU. Many survivors and caregivers suggested that
the lack of continuity across care environments could have been less-
ened by having 1 professional overseeing the case from beginning to
end and being available to guide the family and explain things to
them. For an example of this, see Fig. 3, quotation 1.
Those few survivors who received inpatient rehabilitation reported
that attending rehabilitation after hospital discharge was an important
part of their continued recovery. Many caregivers and survivors who
did not receive any follow-up services (including rehabilitation and
home care) mentioned that physical and, sometimes, psychological
246 A.I. Czerwonka et al. / Journal of Critical Care 30 (2015) 242–249
symptoms emerged only after they returned home, and these symp-
toms were never addressed due to the lack of follow-up postdischarge.
There were also concerns about the late onset of rehabilitation, for ex-
ample, not starting on the general ward (see Fig. 3, quotation 2).
At 1 to 2 years post-ICU discharge, many survivors and caregivers
desired more contact with the health care team. Survivors wanted the
opportunity to ask questions and get feedback on how their recovery
was going, but because they were not being followed up this long
after their ICU stay, they did not know where to go to get their questions
answered (see Fig. 3, quotation 3).
In subthemes 1 through 3 below, we explored how decreasing
access to health care services affects survivors' and caregivers' experi-
ences post-ICU.
3.4. Subtheme 1: Informational needs change across the care continuum
Participants' needs for information changed while moving across
care environments. While in the ICU, survivors were usually sedated
and noncommunicative, and most caregivers took a proactive role, be-
coming well informed about their loved one's condition and treatment.
Some caregivers felt that their persistence and ability to ask questions
were helpful in getting the information they needed (see Fig. 3, quota-
tion 4). Once survivors awoke in the ICU, they wanted to understand
what had happened to them as well as their current state, including
their ability to walk, speak, and think clearly.
Families reported varied experiences post-ICU. Many indicated it
was not as easy getting information and they tended not to trust down-
stream health professionals' knowledge of the patient's condition. Post-
ICU, the medical team tended to speak directly with the survivor and no
longer included the family in medical discussions. Some survivors felt
that they did not receive enough information about what to expect in
their recovery, specifically about what to expect while attending reha-
bilitation. In contrast, some caregivers had positive experiences on the
general ward and felt that their questions were always answered. See
Fig. 3, quotations 5 and 6, for examples of caregivers who have had neg-
ative and positive experiences obtaining information directly after ICU
discharge, respectively.
When survivors were returning home, most family caregivers
were not informed about how much assistance they would need to
provide. As a result, they were usually overwhelmed with providing
care and assuming the survivors' prior chores and responsibilities
(see Fig. 3, quotation 7).
Survivors' questions about their experience and medical condition
persisted after returning to the community, and they were uncertain
where to turn for answers. Many survivors wanted to better understand
the details of their ICU stay to be able to make sense of what had hap-
pened to them. Those caregivers who were satisfied with the informa-
tion received from health care professionals usually accompanied
patients to some type of follow-up care due to a coexisting medical con-
dition (eg, cardiac follow-up appointments or a home care nurse for
wound care). Both survivors and caregivers wanted more information
and guidance on long-term recovery, “normal” recovery, things to
look out for in terms of their health, physical activities safe to participate
in, and whether it was possible to regain their pre-ICU physical strength.
See Fig. 3, quotations 8 and 9 where 1 survivor described her needs for
information during her preparation for discharge home and then de-
scribed her ongoing needs for information once she had been back
home for over 1 year.
3.5. Subtheme 2: Fear and worry exist when families do not know what
to expect
Many survivors and caregivers reported feeling fear and worry in the
early phases of critical illness, and in some cases, these feelings persisted
after the survivor was back at home. Typically, during each phase of the
TIR framework, survivors would worry about what would happen as
they transitioned to new care environments, and this worrying was re-
lated to their uncertainty about how their recovery would progress
moving forward. They also had concerns about receiving less care and
monitoring, health care staff not being familiar with the survivor's
case, and the risk of falls. For an example of the fears of the unknown ex-
perienced by some patients and caregivers during transitions across
care environments, see Fig. 3, quotation 10.
After transitioning from the ICU, interaction with health care profes-
sionals had the ability to ease patients' and caregivers' fears at various
points across the recovery trajectory. It was a comfort to both patients
and their families to have someone checking in on them who understood
the patient's case. Specifically, while on the step-down ward, it eased pa-
tient and caregiver's fears when the ICU team who was familiar with the
patient's case came to check on the survivor (see Dig. 3, quotation 11).
Likewise, caregivers were also more confident and less fearful taking
the survivor home when they were well prepared with lists and instruc-
tions from the physiotherapy team, had a home care nurse come in to
help care for the patient, and received calls from nurses from other
clinics (eg, cardiac if patient had cardiac issues) to check in with the sur-
vivor and coordinate appointments. Home care nurses were available to
survivors who had open wounds that required dressing changes, but
they were not standard for other ICU survivors. For an example of the
perceived benefit of these services in easing caregivers' fears, see
Fig. 3, quotation 12.
Fear of the unknown usually decreased once the survivor and family
adjusted to the next phase of care (eg, adjusting to the general ward from
the ICU) and realized that things were not as bad as they had originally
thought they could be. For example, many patients and caregivers who
were initially apprehensive about the transfer to the step-down unit ret-
rospectively considered the move to be a positive step in recovery that
helped motivate the survivor to do things on their own. There were
also those patients and caregivers who reported fear and worry that
persisted into the long term. See Fig. 3, quotation 13, for an example of
the daily worries experienced by an elderly husband caring for his wife.
3.6. Subtheme 3: Survivors transition from dependence to independence
This emerging theme began to arise from the interviews, although it
did not reach saturation and requires exploration in future research.
Across the illness and recovery trajectory, many participants discussed
a shift in who was primarily responsible for the survivor's health. In
the ICU, patients' health was the responsibility of health care profes-
sionals with some contribution by family caregivers. As the survivor
moved across care environments, the health care team's involvement
decreased. Depending on factors such as the mental well-being and cog-
nitive and physical abilities of the survivor, responsibility shifted to ei-
ther the survivor or the family caregiver.
On the general ward, most survivors discussed beginning to gain in-
dependence by doing basic tasks for themselves, such as expressing
their needs to the nursing staff, and getting out of bed and going to
the washroom on their own. For example, 1 survivor described her ex-
perience with limited assistance on the ward resulting in her finding the
strength to begin to take care of herself (Fig. 3, quotation 14).
When survivors returned home, they indicated receiving little assis-
tance from the health care system. As a result, family caregivers assisted
with the survivors' care until they were well enough to care for them-
selves. At this stage, survivors often felt that they were a burden on
their family, and it was common for family caregivers to report feeling
overwhelmed with responsibility (see Fig. 3, quotation 15).
The transfer of responsibility from the family caregiver to the patient
did not always happen as expected. The extent to which survivors de-
sired to recover and become independent differed from person to per-
son, and the factors influencing their motivation to recover were not
always clear. Some survivors disliked being dependent and felt that
they were a burden on their family, and this seemed to motivate them
to recover faster and regain their independence. For others, caregivers
 A.I. Czerwonka et al. / Journal of Critical Care 30 (2015) 242–249
suspected depression could be hindering the survivor's recovery and re-
turn to independence. As a result, caregivers reported feeling obligated
to continue to manage the survivor's health. When the patients' shift to-
ward independence did not proceed as expected, this was usually relat-
ed to a combination of the caregiver not relinquishing care or the
survivor not taking ownership over their own health because they
were not able or willing to do so. This appeared to cause a strain in
the caregiver-patient relationship. For example, 1 survivor articulated
how being back at home forced her to do things on her own and gradu-
ally take ownership over her own well-being (Fig. 3, quotation 16),
whereas another caregiver expressed her frustration that her husband
would not take ownership over his well-being (Fig. 3, quotation 17).
Between 6 months to 2 years post-ICU discharge, most caregivers in-
dicated that although the patient's condition had improved, the family
had not returned to their pre-ICU functioning. Survivors reported that
they still experienced decreased strength and endurance compared
with their pre-ICU state and this compromised their ability to lead a
normal life. Caregivers continued to do more than usual (eg, housework,
helping survivor with transportation, etc). See Fig. 3, quotation 18, for
an example.
4. Discussion
This qualitative pilot study begins to explore the changing needs of
mechanically ventilated ICU survivors and their family caregivers,
across the recovery trajectory. We have demonstrated the feasibility of
conducting a qualitative study exploring experiences of ICU survivors
and their families during the first 2 years post ICU-discharge and provid-
ed preliminary insights, which will be explored further in a larger scale
version of the study, which is currently under way. Our pilot study adds
to the literature by providing insights into ICU patient and family expe-
riences from the ICU to 2 years post-ICU discharge and identifying the
need for more research into long-term experiences of this group. From
our pilot analysis, we identified 4 themes, which were influenced by
time post-ICU discharge. The overriding theme that survivors do not ex-
perience continuity of medical care during recovery after critical illness
influenced all subsequent themes, including (1) informational needs
change across the care continuum, (2) fear and worry exist when fam-
ilies do not know what to expect, and (3) survivors transition from de-
pendence to independence.
Our study highlighted some preliminary insights into long-term ed-
ucation and support needs of ICU survivors and their families. As pro-
posed by the Medical Research Council [3,23], qualitative research can
be used to inform the development of complex health interventions,
firstly by defining the problem and proposing a detailed description of
how the problem can be addressed. The needs reported by ICU survivors
and their caregivers in the early stages of critical illness were consistent
with the literature to date [24]. In the ICU, caregivers reported feeling
well supported, as information was usually provided and the medical
team was available and receptive to answer questions. Our study adds
to the literature by beginning to identify the needs of ICU families during
long-term recovery. As patients moved from the ICU to other care envi-
ronments, there were typically fewer medical professionals available to
answer survivors' and caregivers' questions, and caregivers were no lon-
ger the main recipient of information. As a result, families did not feel
adequately prepared to manage their care needs. Many families also
expressed decreased confidence in health professionals encountered
post-ICU; they felt that health providers did not fully understand the
survivor's post-ICU condition. As such, it may be beneficial to educate
health care professionals, especially general practitioners, about survi-
vor and family needs for ongoing support as they recover.
Across the illness trajectory, especially during transitions, a fear of
the unknown experienced by the survivor and family caregiver was typ-
ical when moving from one care environment to the next. This transi-
tion anxiety has been defined in the qualitative and quantitative
literature in the early ICU stages [25-27]. Our study suggests that
247
transfer anxiety can also occur during transitions to other facilities (eg,
rehabilitation) and as patients transition home. In cases where there
was some follow-up from the ICU team post-ICU, families reported feel-
ing that their anxiety was lessened. The transition anxiety that persists
post-ICU may help to explain the adverse psychologic outcomes such
as anxiety and depression that can persist in patients [28,29] and family
members [30] up to 4 years post-ICU discharge. Therefore, an interven-
tion that provides information and support, especially in the long-term
post-ICU patient, may ease the fear experienced by survivors and care-
givers as they transition across care environments and improve long-
term psychologic outcomes.
Caregivers in this study mentioned that it would be helpful to have 1
person managing their case across the care continuum, who can instruct
the patient and family on things such as diet and lifestyle post-ICU.
However, although a disease management program, which included
care coordination and family support up to 2 months posthospital dis-
charge showed a reduction in rehospitalization and resulted in cost-
savings for the health care system, there was no statistically significant
effect on caregiver outcomes such as depression and burden [31,32].
Our qualitative findings may be used to further develop disease man-
agement programs, which continue 1 to 2 years post-ICU discharge.
Specifically, interventions could be designed to target caregiver fear
and anxiety as they were commonly experienced in our sample. As
such, anxiety could also be explored as a caregiver outcome in future in-
tervention studies to determine if an intervention that targets anxiety is
able to reduce caregiver anxiety.
Our study adds to the literature by beginning to highlight the impor-
tance of ICU survivors' transition from dependence to independence
across the recovery trajectory. This preliminary theme will be further
explored in the larger scale study, which is currently ongoing. From
ICU care to long-term home adjustment, as the health care team's in-
volvement in patient care decreased, the patient became dependent
on the family until they gradually regained their independence.
Obtaining a healthy level of independence may be important to improve
long-term well-being of both the family caregiver and the ICU survivor.
A qualitative study exploring the dynamics of the caregiver-survivor re-
lationship up to 3 months post-ICU discharge [12] similarly observed
the importance of the shift toward patient independence for optimal re-
covery. In the present study, we observed that disruptions in this shift
toward patient independence were associated with strained survivor-
caregiver relationships up to 2 years post-ICU discharge. Disruptions
to patient independence were usually related to a combination of the
caregiver interfering with the patient's independence or the survivor
not initiating activities that contribute to their independence. Intensive
care unit survivor outcomes may be improved if family caregivers are
trained to support the survivors' transition to independence. In the
chronic disease literature, the effects of various family behaviors on
chronic illness outcomes have been evaluated and systematically
reviewed [33]. This literature suggests that a family's emphasis on sur-
vivor self-reliance and personal achievement is associated with better
survivor outcomes, whereas critical, overprotective, and controlling re-
sponses are associated with negative survivor outcomes. Further re-
search is required to determine if, how, and when certain family
behaviors can influence ICU survivor recovery and outcomes.
Because this was a pilot study, there were some limitations. Al-
though the aim of qualitative studies is not to generate generalizable
data, the transferability of the findings can be enhanced by including a
diverse and representative sample population. As such, the transferabil-
ity of the present findings may have been limited because (a) partici-
pants were recruited from only 2 urban ICUs and (b) the number of
participants was small (5 ICU survivors and 7 family caregivers). The
study may have also been limited by the fact that several participants
were not interviewed at all intended time points. Although our findings
begin to provide insight into the long-term experiences of ICU survivors
and their caregivers, the missing interviews limit our ability to make
any longitudinally based conclusions about the experiences and needs
248 A.I. Czerwonka et al. / Journal of Critical Care 30 (2015) 242–249
of these populations. In this analysis, we did not explore whether subse-
quent interviews provided different perspectives. Conducting multiple
interviews at various time points can help delineate changing perspec-
tives of the same experience over time (eg, comparing a patient's per-
spective of their transition home directly following the event and 1
year later) but was beyond the scope of this pilot study. Finally, the
depth of the findings may have been limited by the short length of the
narrative interviews (median, 23 minutes [range, 15-52 minutes]). In
some situations, further probing after a participant's brief response
could have uncovered more in-depth information and may have re-
vealed differences in survivor and caregiver perspectives. These insights
have been used to inform a larger scale version of the study, which is
currently ongoing in 6 cities across Canada. A national perspective on
these preliminary themes, with a larger sample of survivors and care-
givers from a wider variety of cases explored in more depth, will provide
more information to inform national recommendations for post-ICU
care for survivors and family caregivers.
5. Conclusions
This qualitative pilot study has demonstrated feasibility for a larger
scale study and has begun to identify the needs and experiences of a
small group of ICU survivors and their family caregivers, where survi-
vors spent a minimum of 7 days receiving mechanical ventilation in
the ICU. Preliminary results show that applying these qualitative find-
ings to intervention development may improve long-term outcomes
for both survivors and their caregivers. Specifically, future care and in-
terventions should include expectations for recovery, especially during
transitions in care, to ease fears of ICU survivors and their family care-
givers. Our findings suggest that survivor recovery and caregiver adjust-
ment may be enhanced by disease management programs that include
1 health care professional who provides the family with the right infor-
mation at the right time during and after complex critical illness. Future
research should focus on understanding and easing transitions over the
long term by giving survivors and caregivers the information and sup-
port they need across the various phases of recovery, especially 1 to 2
years postdischarge when it is most lacking. More research on how fam-
ily behaviors can affect patient independence and recovery should be
conducted to develop interventions that ease this process.
6. Key messages
• Survivors of complex critical illness and their family caregivers
typically do not experience continuity in care post-ICU.
• Information needs of survivors and their family are highest 1 to
2 years post-ICU discharge, when many survivors receive no
follow-up care and wanted to know what to expect and whether
their recovery is progressing normally.
• In addition to ICU transfer anxiety, patients and their family care-
givers experience fear and worry as they transition to rehabilita-
tion and to their home and community. These fears may be
eased by follow-up from health care professionals during and
after the transitions in care.
• As ICU survivors regain independence over time, families may
benefit from support to assist in a smooth transfer of responsibility
from the family caregiver to the survivor.
Competing interests
The authors declare that they have no competing interests.
Authors' contributions
AIC analyzed all data (developed the interview guide, coded the in-
terviews using framework analysis, and developed the themes) and
drafted the manuscript. JIC conceived of the study and participated in
its design and coordination, participated in all aspects of data analysis
(developing the interview guide, coding the interviews, and developing
the themes), and helped to draft the manuscript. MSH conceived of the
study and participated in its design and coordination, reviewed the
themes, and helped to draft the manuscript. AM and LMC were involved
in the conception and design of the study as well as the coordination
and acquisition of data. LC was involved in early review of the manu-
script content. All authors read and approved the final manuscript.
Acknowledgments
This study was funded by the University of Toronto Faculty of
Medicine Dean's Fund (Toronto, Ontario, Canada) and Canadian Institutes
of Health Research (Ottawa, Ontario, Canada) New Investigators
Award (JIC).
References
[1] Lee CM, Herridge MS, Matte A, Cameron JI. Education and support needs during re-
covery in acute respiratory distress syndrome survivors. Crit Care 2009;13:R153–64.
[2] Sinuff T, Cook DJ, Giacomini M. How qualitative research can contribute to research
in the intensive care unit. J Crit Care 2007;22:104–11.
[3] Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D,
et al. Framework for design and evaluation of complex interventions to improve
health. BMJ 2000;321:694–6.
[4] Field K, Prinjha S, Rowan K. “One patient amongst many”: a qualitative analysis of
intensive care unit patients' experiences of transferring to the general ward. Crit
Care 2008;12:R21–30.
[5] Corrigan I, Samuelson KA, Fridlund B, Thome B. The meaning of posttraumatic
stress-reactions following critical illness or injury and intensive care treatment. In-
tensive Crit Care Nurs 2007;23:206–15.
[6] Prinjha S, Field K, Rowan K. What patients think about ICU follow-up services: a
qualitative study. Crit Care 2009;13:R46–56.
[7] Jamerson PA, Scheibmeir M, Bott MJ, Crighton F, Hinton RH, Cobb AK. The experiences
of families with a relative in the intensive care unit. Heart Lung 1996;25:467–74.
[8] Kutash M, Northrop L. Family members' experiences of the intensive care unit
waiting room. J Adv Nurs 2007;60:384–8.
[9] Eggenberger SK, Nelms TP. Being family: the family experience when an adult mem-
ber is hospitalized with a critical illness. J Clin Nurs 2007;16:1618–28.
[10] Nelson JE, Kinjo K, Meier DE, Ahmad K, Morrison RS. When critical illness becomes
chronic: informational needs of patients and families. J Crit Care 2005;20:79–89.
[11] Cypress BS. The intensive care unit: experiences of patients, families, and their
nurses. Dimens Crit Care Nurs 2010;29:94–101.
[12] Chiang VC. Surviving a critical illness through mutually being there with each other:
a grounded theory study. Intensive Crit Care Nurs 2011;27:317–30.
[13] Cox CE, Docherty SL, Brandon DH, Whaley C, Attix DK, Clay AS, et al. Surviving crit-
ical illness: acute respiratory distress syndrome as experienced by patients and their
caregivers. Crit Care Med 2009;37:2702–8.
[14] Cameron JI, Gignac MA. “Timing It Right”: a conceptual framework for addressing
the support needs of family caregivers to stroke survivors from the hospital to the
home. Patient Educ Couns 2008;70:305–14.
[15] Cohen S, Underwood LG, Gottlieb BH. Social support measurement and intervention.
New York: Oxford University Press; 2000.
[16] Novick G. Is there a bias against telephone interviews in qualitative research? Res
Nurs Health 2008;31(4):391–8 [Wiley Subscription Services, Inc., A Wiley Company,
Wiley Subscription Services, Inc., A Wiley Company].
[17] Sturges JE, Hanrahan KJ. Comparing telephone and face-to-face qualitative
interviewing: a research note. Qual Res 2004;4(1):107–18 [4-1].
[18] Rabiee F. Focus-group interview and data analysis. Proc Nutr Soc 2004;63:655–60.
[19] Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A,
Burgess RG, editors. Analyzing qualitative data. New York: Routledge; 1994. p. 173–94.
[20] McReynolds CJ, Koch LC, Rumrill Jr PD. Qualitative research strategies in rehabilita-
tion. Work 2001;16:57–65.
[21] Giacomini MK, Cook DJ. Users' guides to the medical literature: XXIII. Qualitative re-
search in health care A. Are the results of the study valid? Evidence-Based Medicine
Working Group. JAMA 2000;284:357–62.
[22] NVivo qualitative data analysis software. [2.0]. QSR International Pty Ltd; 2002.
[23] Campbell NC, Murray E, Darbyshire J, Emery J, Farmer A, Griffiths F, et al. Designing
and evaluating complex interventions to improve health care. BMJ 2007;334:455–9.
[24] Azoulay E, Pochard F, Chevret S, Lemaire F, Mokhtari M, Le Jr G, et al. Meeting the
needs of intensive care unit patient families: a multicenter study. Am J Respir Crit
Care Med 2001;163:135–9.
[25] Coyle MA. Transfer anxiety: preparing to leave intensive care. Intensive Crit Care
Nurs 2001;17:138–43.
[26] Mitchell ML, Courtney M, Coyer F. Understanding uncertainty and minimizing families'
anxiety at the time of transfer from intensive care. Nurs Health Sci 2003;5:207–17.
[27] Chaboyer W. Intensive care and beyond: improving the transitional experiences for
critically ill patients and their families. Intensive Crit Care Nurs 2006;22:187–93.
 A.I. Czerwonka et al. / Journal of Critical Care 30 (2015) 242–249 249

[28] Adhikari NK, Tansey CM, McAndrews MP, Matte A, Pinto R, Cheung AM, et al. Self-
reported depressive symptoms and memory complaints in survivors five years
after ARDS. Chest 2011;140:1484–93.
[29] Bienvenu OJ, Colantuoni E, Mendez-Tellez PA, Dinglas VD, Shanholtz C, Husain N,
et al. Depressive symptoms and impaired physical function after acute lung injury:
a 2-year longitudinal study. Am J Respir Crit Care Med 2012;185:517–24.
[30] Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive
care syndrome-family. Crit Care Med 2012;40:618–24.
[31] Daly BJ, Douglas SL, Kelley CG, O'toole E, Montenegro H. Trial of a disease manage-
ment program to reduce hospital readmissions of the chronically critically ill.
Chest 2005;128:507–17.
[32] Douglas SL, Daly BJ, Kelley CG, O'toole E, Montenegro H. Impact of a disease manage-
ment program upon caregivers of chronically critically ill patients. Chest 2005;128:
3925–36.
[33] Rosland AM, Heisler M, Piette JD. The impact of family behaviors and communication pat-
terns on chronic illness outcomes: a systematic review. J Behav Med 2012;35:221–39.