Intensive Care Med (2004) 30:456460

DOI 10.1007/s00134-003-2149-5

Christina Jones
Paul Skirrow
Richard D. Griffiths
Gerrald Humphris
Sarah Ingleby
Jane Eddleston
Carl Waldmann
Melanie Gager

Received: 28 January 2003

Accepted: 18 December 2003
Published online: 4 February 2004

Springer-Verlag 2004
C. Jones ()) P. Skirrow R. D. Griffiths
Department of Medicine,
Intensive Care Research Group,
University of Liverpool,
Liverpool, Merseyside, L69 3GA, UK
e-mail: christinajonesc@aol.com
Tel.: +44-(0)151-4261600 ext 2382
Fax: +44-(0)151-4301628
C. Jones P. Skirrow R. D. Griffiths
Intensive Care Unit,
Whiston Hospital,
Prescot, UK
G. Humphris
Bute Medical School,
University of St. Andrews,
St. Andrews, Scotland, KY16 9TS, UK
S. Ingleby J. Eddleston
Intensive Care Unit,
Manchester Royal Infirmary,
Manchester, UK
C. Waldmann M. Gager
Intensive Care Unit,
Royal Berkshire Hospital,
Reading, UK

ORIGINAL

Post-traumatic stress disorder-related

symptoms in relatives of patients following
intensive care

Abstract Objective: To evaluate the

effectiveness of the provision of information in the form of a rehabilitation program following critical illness in reducing psychological distress in the patients close family.
Design: Randomised controlled trial,
blind at follow-up with final assessment at 6 months. Setting: Two
district general hospitals and one
teaching hospital. Patients and participants: The closest family member
of 104 recovering intensive care unit
(ICU) patients. Interventions: Ward
visits, ICU clinic appointments at 2
and 6 months. Relatives and patients
received the rehabilitation program at
1 week after ICU discharge. The
program comprised a 6-week selfhelp manual containing information
about recovery from ICU, psychological information and practical
advice. Measurements and results:
Psychological recovery of relatives
was assessed by examining the rate of
depression, anxiety, and post-traumatic stress disorder (PTSD)-related

Introduction
The patients primary care giver on discharge from
hospital following critical illness is mainly their close
family. Relatives have been shown to experience very
high levels of anxiety and depression while the patient is
in ICU [1]. A study of 76 relatives found high levels of
anxiety, with 50% of family members of gravely ill
patients showing symptoms of depression [2]; however,
very little work has been done on the psychological

symptoms by 6 months after ICU.

The proportion of relatives scoring in
the range >19 on the Impact of
Events Scale (cause for concern) was
high in both groups at 49% at
6 months. No difference was shown
in the rate of depression, anxiety, or
PTSD-related symptoms between the
study groups. Conclusion: A high
incidence of psychological distress
was evident in relatives. Written information concerning recovery from
ICU provided to the patient and their
close family did not reduce this. High
levels of psychological distress in
patients were found to be correlated
with high levels in relatives.
Keywords Intensive care unit
Relatives Critical illness
Rehabilitation Anxiety
PTSD-related symptoms

distress suffered by relatives during the months after the

patients critical illness. The initial phase on discharge
from hospital is stressful for both patients and relatives,
who report not being given clear information about what
the patient can do when they go home and who to contact
in case of any major problems [3]. Relatives report
sleeplessness when the patient first go home because, for
instance, they are lying awake watching the patient to see
if they are still breathing [3].

457

Patients need assistance from their family and friends

during their recovery, but the trauma and distress experienced by relatives may mean the family members are
just as much in need of support. It has been shown that
relatives of myocardial infarction patients struggle to
cope with the patients illness. A study of wives of
myocardial infarction patients showed that 83% suffered
insomnia, with 17% reporting this to be severe and 69%
reported feeling permanently fatigued [4]. The majority of
the wives in the study wanted information about caring
for the patient when they went home.
The literature on recovery from critical illness is
sparse, but the cardiac rehabilitation field has examined
the question of information giving to relatives of coronary
care patients. It has been shown that informal counselling
of first time myocardial infarction patients and their
relatives before discharge from hospital significantly
reduced anxiety levels [5]; hence, a number of reports
have indicated that relatives of critically ill patients
undergo substantial psychological distress, which may be
attenuated by active intervention of the patients health
care team.
The aim of the present study was to test whether the
provision of a 6-week self-help rehabilitation package
post ICU given jointly to the patient and close family
could reduce relatives psychological distress, particularly
reducing anxiety and depression, at 6 months after ICU.

Method
To examine the hypothesis a block randomised, controlled experimental design was used, which was blind at follow-up. Three ICUs
were involved in the study to ensure sufficient power. A parallel
study examining the effect on the patients physical and psychological recovery has been reported previously [6]. All the patients
who had relatives in the study had had an ICU stay of >48 h, were
emergency admissions and had been ventilated.
To test the efficacy of a rehabilitation program in reducing
psychological distress, relatives anxiety and depression scores
were recorded while the patient was on the general wards and again
at 8 weeks and 6 months after ICU discharge using the Hospital
Anxiety and Depression Scale (HAD) [7]. The HAD has only 14
questions, it is simple to complete and gives separate scores for
anxiety and depression. Caseness for anxiety or depression on the
HAD was signified by the conventional cut-off score of 11 and over
[7]. The HAD scores can be used as a continuous measure or as a
dichotomous variable, e.g. depressed or not. Trait anxiety, i.e. some
measure of the relatives normal level of anxiety prior to the ICU
admission, was assessed at recruitment using the Spielbergers
State-Trait Anxiety Inventory (STAI) [8]. The trait scale consists of
20 statements and respondents are asked to say how they generally
feel. The scores are used as a continuous measure with high scores
showing high levels of anxiety normally. The Impact of Events
Scale (IES) was used at 8 weeks and 6 months to assess the
development of PTSD-related symptoms and is a 15-item questionnaire. The scores can be used as a continuous measure with
high scores showing high levels of symptoms. Alternatively, it has
been suggested that a score of >19 demonstrates a level of
symptoms that are a cause for concern [9]. To assess the health
status of the respective patients all were asked to complete the

Short form 36 (SF-36) [10] on the ward after ICU discharge with
the instruction to complete it with reference to their health in the
6 months prior to ICU admission to assess their premorbid health.
The study was conducted at Whiston Hospital, Merseyside (W),
Manchester Royal Infirmary (M) and Royal Berkshire Hospital,
Reading (R), all in the UK. These hospitals already had established
follow-up clinics for patients recovering from critical illness. The
individual hospitals local research ethics committees approved the
study protocol.
Subjects
Once written consent was obtained, recovering ICU patients and
their closest relative were randomly allocated to intervention or
control group using a closed envelope technique. The envelopes
were randomised in blocks of 6 treatment and 6 controls. The
closest relative was defined as the member of the family who was
to be most closely involved in the patients care once they are
discharged home. As it was the patient who was randomised to the
group and some patients did not have close relatives available, there
was a slight difference in the number of relatives in the two study
groups.
Intervention
Relatives and patients in the treatment group were introduced to the
ICU rehabilitation manual together. The rehabilitation manual was
developed using information gained from analysis of eight in-depth
interviews with patients and relatives and from data gained through
a long-running support group for patients and relatives. The manual
was piloted on 20 relatives and patients [11]. Advice on areas such
as nutrition, what to expect when the patient goes home and
exercise were included. Although primarily focused on the patients
own recovery, there were sections on relaxation and coping with
stress that the relatives were encouraged to use, in addition to the
patient (see Appendix for topics covered). Patients and relatives in
the control group were given general verbal information about
recovery from ICU. All patients were told that they would receive
three phone calls at home, one every 2 weeks, following discharge,
to check if they were having any problems.
The psychological follow-up was carried out by a separate
researcher, who was unaware of group assignment. Relatives were
asked to attend the patients routine appointment at the ICU
outpatient clinic to complete the follow-up questionnaires.
Statistical analysis
Sample size
Based on previously published data on the provision of information
to family members about recovery and care after hospital discharge,
which significantly reduced anxiety levels in relatives of first-time
myocardial infarction patients for up to 6 months afterwards [5] and
observed levels of anxiety of 33% in relatives of ICU patients [12],
a sample size of 42 experimental subjects and 42 controls (n=84)
will have 80% power to detect a difference in means of 2.5
assuming that the common standard deviation is 4 using a twogroup t test with a 0.05 two-sided significance level [13].
Analysis
The analysis was performed using SPSS for Windows (version 9.0).
Questionnaire data were treated as ordinal and analysed using nonparametric statistics [13], with the exception of scores derived from

458

multi-item scales. In these cases the variances of the groups being

compared were checked for equality (Levenes test) and where no
significant deviations were found, parametric tests were applied.
Values for missing follow-up data were calculated using last value
carried forward to allow intention-to-treat analysis [14].
A repeated measures analysis of variance (MANOVA) was
employed to test for group effects over time. Variables thought to
have an effect on recovery were tested as independent variables.

Results
The total sample recruited into the study was 104. A large
majority of the relatives (n=100) lived in the same house
as the patient, either permanently or as a temporary
measure until the patient was strong enough to go home.
A small number not living in the same house (n=4) saw
the patient on a daily basis once they went home from
hospital. For the older patients, most family members
recruited were the spouse, partner or adult child, and for
the younger patients a parent (see Table 1 for breakdown
by study group). Ninety of 104 (86%) relatives (50
intervention, 40 controls) completed all questionnaires at
8 weeks. Eighty-four of 104 (81%) relatives (47 intervention, 37 controls) completed the full 6-month followup.
The characteristics of the relatives were similar in the
two study groups. Trait anxiety, HAD anxiety and
depression scores at 2 weeks were compared using
analysis of variance (ANOVA), and no statistically
significant differences were found (p=0.5, p=0.6, p=
0.25, respectively). Using the HAD cut-off of 11 for
caseness, 58% of the intervention and 62% of the control
relatives were anxious at recruitment to the study and

Table 1 Demographic and follow-up details for relatives in

the two study groups. HAD
Hospital Anxiety and Depression Scale, IES Impact of
Events Scale

Table 2 Characteristics of patients with relatives recruited to the

study
Variable

Study group

Median (range)

Rehabilitation

Control

(n=58)

(n=46)

Illness severity
17 (428)
16 (634)
(APACHE II score)
Age (years)
53 (1777)
61 (1784)
Length of ICU stay (days)
14 (2114)
12 (2110)
Length of hospital stay
34 (10217)
32 (9257)
Diagnostic group
Respiratory failure
30 (50%)
22 (47%)
(pneumonia, COPD)
Sepsis (intra-abdominal
11 (19%)
11 (23%)
infection)
Trauma
7 (13%)
5 (11%)
Miscellaneous
10 (18%)
8 (18%)
At recruitment to study (~1 week after ICU discharge)
HAD anxiety score (mean,
8, 7.5 (020)
7, 7.5 (117)
median, range)
HAD depression score
5, 6 (015)
6, 5.5 (018)
(mean, median, range)

22% of the intervention and 31% of the controls were

depressed. This was not statistically significant (Fishers
two-tailed exact test, p=0.71, p=0.32, respectively).
The patients pre-morbid health prior to ICU admission was assessed using the SF-36. There were no
differences found between the SF-36 physical function
scores, general health or mental health scores between the
two groups (see Table 2 for patient details; t test p=0.57,
p=0.44, p=0.69, respectively). During the 6-month fol-

Variable

Study group

p ANOVA

Family member type:

Rehabilitation

Control

(n=58)

(n=46)

Spouse/partner
29
25
Adult child
12
8
Parent
10
9
Sibling
4
3
Grandchild/Niece
3
1
Age of relatives (years; mean, SD, range)
6217 (1782)
6015.4 (1880)
At recruitment to study (~1 week after ICU discharge; mean, median, range)
HAD anxiety score
11, 11 (020)
12, 12 (020)
HAD depression score
6.5, 7 (017)
7, 7 (017)
Trait anxiety scores
47.5, 47 (064) 47, 47.5 (064)
At follow-up
8 weeks (mean, median, range)
n=50
n=40
HAD anxiety score
6.9, 7 (020)
7.8, 8 (017)
HAD depression score
3.8, 3 (012)
4.6, 3 (014)
IES scores
23.6,18 (071)
25, 25 (062)
6 months (mean, median, range)
n=47
n=37
HAD anxiety score
6.8, 7 (020)
7.3, 8 (017)
HAD depression score
3.7, 3 (012)
4.6, 4 (016)
IES scores
21.8, 16 (061) 27, 25 (069)

0.6
0.25
0.5

0.94
0.91
0.90
0.72
0.29
0.20

459

Table 3 Correlation between patient characteristics and IES scores

in relatives at 6 months

Discussion

Patient characteristics

The ICU relatives did not show any psychological benefit

from the provision of information about recovery from
critical illness given in the form of a rehabilitation manual
given to and directed at the patient. The provision of
additional information to relatives to help them cope with
the recovery phase of the patients critical illness did not
help them to cope with their own feelings and memories
for the time in ICU. Patients, however, randomised to the
rehabilitation manual reported improved physical recovery and some degree of psychological benefit [6]. It is
interesting that high rates of PTSD-related symptoms
were found and were correlated with similar high levels in
the patients. Such high levels of symptoms of PTSD had
not been anticipated prior to commencing the study.
High levels of anxiety (67%) have been shown among
relatives of myocardial infarction (MI) patients and a
need for information about caring for the patient at home
has been expressed [16, 17]. A simple program of
education and psychological support resulted in statistically significant reduction in the anxiety rate among
wives of MI patients compared with routine discharge
advice [5]. Yet, the provision of such information and
psychological support seems to have had no effect on
anxiety, depression or PTSD-related symptoms in ICU
relatives in this study. A possible explanation is that the
MI study only included simple, uncomplicated myocardial infarction patients; those with complications such as
heart failure or arrhythmias were excluded. Therefore, the
coronary care stay would be short and the patient would
quickly be mobilised on day 3 of their hospital stay. The
ICU relatives frequently sit by the bedside for prolonged
periods of days or weeks while the patient is extremely
sick. It is likely that despite the support given by ICU
nurses, relatives are traumatised by such an experience.
The correlation between high levels of PTSD-related
symptoms in the relatives and patients points to the family
being too traumatised to deal with the patients psychological needs. These results suggest that there is a need to
offer formal counselling of close relatives given such high
initial levels of PTSD-related symptoms were documented. Even if the relatives are not themselves traumatised by
the experience, it has been shown that family members
are often unsure how to react to individuals suffering from
PTSD. They may avoid talking about the precipitating
event so as not to distress the victim [18].
It is likely that a high percentage of relatives experience acute post-traumatic stress reactions during the first
few weeks after ICU. Such reactions may be transient and
self-limiting [19] and it is suggested that they can be
regarded as a normal reaction to severe stress; however,
the presence of severe symptoms at this early stage is seen
as a risk factor for the development of later PTSD [20].
An interesting finding from this study is the correlation
between psychological distress in patients and relatives.

Spearmans rho

In ICU
Illness severity (APACHE II)
0.07
Age at admission
0.08
Length of ICU stay
0.04
In hospital
HAD anxiety scores at recruitment
0.21
HAD depression scores at recruitment 0.10
Length of hospital stay
0.03
At 6-month follow-up
IES scores at 6 months
0.40
HAD anxiety scores at 6 months
0.32
HAD depression scores at 6 months
0.23

p value
0.48
0.48
0.66
0.03
0.28
0.72
0.0001
0.001
0.015

low-up a record was made of the patients GP appointments, district nurse visits, home physiotherapy visits,
hospital outpatient appointments and help provided by
social services. No differences were found between the
two study groups for any of these variables (ANOVA;
p=0.07, p=0.59, p=0.99, p=0.68, p=0.46, respectively).
Repeating the analysis using only complete data (rather
than intention to treat) produced near identical results.
The HAD anxiety and depression scores at 8 weeks
and 6 months of the two study groups were compared
using repeat measures analysis of variance (MANOVA),
no statistically significant differences were found
(p=0.84, p=0.98, respectively) There were lower numbers
of anxious relatives (HAD 11) in the intervention group
at 8 weeks follow-up (27 vs 35%), but this was not
statistically significant (Fishers two-tailed exact test,
p=0.34). This decreased slightly by 6 months to 22% in
the intervention group and 24% in the controls. No
difference was found in the level of depression (HAD
11) in relatives between the two study groups at either
8-week or 6-month follow-up (see Table 1). No difference
was observed for the relatives IES scores between study
groups at 8 weeks and 6 months (MANOVA, p=0.662).
No association was found between the relatives IES
scores and a number of demographic variables related to
the patients stay in ICU (see Table 3); however, an
association was found between psychological distress in
the patient both at recruitment at 2 weeks after ICU
discharge and at 6-month follow-up and high IES scores
in their relatives at 6-month follow-up (see Table 3).
Horowitz et al. suggests that a score of >19 on the IES
demonstrates a level of PTSD-related symptoms that are a
cause for concern [15]. Forty-one (49%) of 84 relatives
scored >19 at 6 months after ICU.

460

That there was an association found between early anxiety

in patients soon after discharge from ICU and symptoms
of PTSD in relatives at the 6-month follow-up needs
further investigation. This could point to the need for a
more family-oriented therapeutic intervention.
One of the limitations of the study is that no information was collected on the relatives previous psychological health other than trait anxiety scores. In addition, no
information was obtained on the relatives perceived level
of social support. Both of these factors may have an
impact on the way individuals cope with stressful events.
In addition, the imbalance of the randomisation due to the
patients being randomised and not all the patients in the
study having family available may have affected the
quality of the randomisation in some way; however, this
did not show up on any statistical tests. Finally, factors
other than the ICU admission may have had an influence
on the way the relatives coped.
In the UK a recent government review of intensive
care services recognised that the ICU environment is

extremely stressful for relatives [21]. Clearly, relatives are

suffering as a result of this stress after ICU. This is the
first study to introduce a formal approach to support
relatives following discharge of the patient from ICU.
Further development is required to identify reliable
positive interventions to reduce distress in relatives.

Appendix
The topics addressed in ICU Recovery Manual are as
follows: Anxiety; Assessing your life style; Changes in
appearance; Depression; Exercises; Feeling jittery; Feeling down; Food; Getting fit again; Getting out and about;
Informationafter intensive care; Living alone; Medicines; Mobility; Mood changes; Nightmares; Overworking; Panic attacks; Phobias; Relaxation; Sex after serious
illness; Sleeping; Smoking; Stress; Stress in marriage;
Tiredness; Where to go from here?; Where to start;
Worrying.

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