JAN

REVIEW PAPER

Short- and long-term impact of critical illness on relatives: literature

review
Fiona Paul & Janice Rattray
Accepted for publication 19 November 2007

Correspondence to F. Paul:
e-mail: f.paul@dundee.ac.uk
Fiona Paul BN MPhil RN
Lecturer
School of Nursing and Midwifery, University
of Dundee, Tayside Campus, Ninewells
Hospital, Dundee, UK
Janice Rattray PhD RN RM
Senior Lecturer
School of Nursing and Midwifery, University
of Dundee, Tayside Campus, Ninewells
Hospital, Dundee, UK

(2008) Short- and long-term impact of critical illness on

relatives: literature review. Journal of Advanced Nursing 62(3), 276292
doi: 10.1111/j.1365-2648.2007.04568.x

PAUL F. & RATTRAY J.

Abstract
Title. Short- and long-term impact of critical illness on relatives: literature review.
Aim. This paper is a report of a literature review undertaken to identify the shortand long-term impact of critical illness on relatives.
Background. Patients in intensive care can experience physical and psychological
consequences, and their relatives may also experience such effects. Although it is
recognized that relatives have specific needs, it is not clear whether these needs are
always met and whether further support is required, particularly after intensive care.
Data sources. The following databases were searched for the period 19502007:
Medline, British Nursing Index and Archive, EMBASE, CINAHL, PsycINFO and
EMB Reviews Cochrane Central Register of Clinical Trials.
Search methods. Search terms focused on adult relatives of critically ill adult
patients during and after intensive care. Recurrent topics were categorized to
structure the review, i.e. relatives needs, meeting relatives needs, interventions,
satisfaction, psychological outcomes and coping.
Results. Studies have mainly identified relatives immediate needs using the Critical
Care Family Needs Inventory. There are few studies of interventions to meet relatives needs and the short- and long-term effects of critical illness on relatives.
Conclusion. Despite widespread use of the Critical Care Family Needs Inventory,
factors such as local or cultural differences may influence relatives needs. Relatives
may also have unidentified needs, and these needs should be explored. Limited
research has been carried out into interventions to meet relatives needs and the
effects of critical illness on their well-being, yet some relatives may experience
negative psychological consequences far beyond the acute phase of the illness.
Keywords: critically ill adults, intensive care, interventions, literature review,
nursing, psychological outcomes, relatives needs

Introduction
Having a relative in an intensive care unit (ICU) is potentially
distressing (Daley 1984, Plowright 1995, Kleinpell 2006).
This experience is unique in that patients have little recall of
factual events, but relatives live the whole event. Recovery
276

from critical illness can be prolonged and patients often have

unrealistic expectations about that recovery. This may be
associated with their lack of recall and understanding of the
severity of their condition, and can be especially difficult for
relatives who are supporting the patient after ICU (Angus &
Carlet 2003, Kleinpell 2006). Approximately 1520% of

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patients experience a posttraumatic stress reaction to the

critical illness event (Cuthbertson et al. 2004, Rattray et al.
2005), which may be associated with their illness or their
perceptions of ICU. Relatives also experience psychological
effects during or after this event (Hughes et al. 2005,
Browning & Warren 2006). Factors that can affect relatives
psychological well-being in ICU include uncertainty about
the patients prognosis and the technical environment
(Martn Rodrguez & Perez San Gregorio 2005). The focus
of research in this area has been mainly on identifying
relatives needs in ICU (Neabel et al. 2000), their satisfaction
with care/support (Hughes et al. 2005) and, to a lesser extent,
on how well relatives needs are met and interventions that
might support them during the critical and recovery periods.
Although there is growing interest in the longer term effects
of critical illness on patients, research is limited on the effects
on relatives (Foster & Chaboyer 2003, Hughes et al. 2005,
Pochard et al. 2005, Kleinpell 2006).

The review
Aim
The aim of the review was to identify the short- and longterm impact of critical illness on patients relatives. This
included identifying relatives needs and experiences and
effective interventions for supporting them throughout the
patients illness.

Design
A narrative review was undertaken, with no quality appraisal
of included studies. In our paper the term patient refers to
adult patients. The terms relative and family member may
include an adult related by birth or not, who is significant to
the patient (Lynn-McHale & Smith 1991).

Search methods
The search strategy involved hand-searching current critical
care journals, identifying cited references and searching the
following electronic databases: Medline (19502007); British Nursing Index and Archive (19852007); EMBASE
(19882007); CINAHL (19822007); PsycINFO (1985
2007) and EMB Reviews Cochrane Central Register of
Clinical Trials (3rd quarter 2007). The search covered the
period 19502007 and was limited to papers published in
or translated into English. The search terms were intensive
care unit; ICU; intensive therapy unit; ITU; relatives;
family members; visitors; carers; needs; critically ill adult;

Short- and long-term impact of critical illness on relatives

discharge; transfer; outcomes; interventions; effectiveness;

effects and impact.
Inclusion criteria
To be included, publications had to be about relatives of
critically ill patients during or following intensive care.
Exclusion criteria
Publications were excluded if they were about:
child patients
bereaved relatives
relatives involved in end-of-life decisions, e.g. withdrawal
of treatment, brain stem death or organ donation
relatives of patients in psychiatric ICUs.

Data abstraction and synthesis

Retrieved abstracts were initially examined to identify
publications that met the inclusion criteria. The full texts of
publications that met the inclusion criteria were then
reviewed and recurrent topics identified and organized into
categories (Burden 2001, Hart 2003). These categories
related to relatives of critically adults during the patients
acute phase in ICU or during the patients recovery phases.
Subcategories of each phase were then derived (Hart 2003);
for example, aspects of the acute phase in ICU included
relatives needs, experiences, satisfaction, coping, psychological effects and interventions to meet relatives needs in ICU.
Subcategories derived for the recovery phases were based on
aspects of the patients ICU or hospital discharge. Fewer
publications were identified for this phase, but those identified mainly focused on relatives coping, preparation for ICU/
hospital discharge, psychological outcomes or quality of life.

Search outcome
Following extraction of publications that did not meet the
inclusion criteria, the search yielded 186 publications. These
publications were mainly research reports, but review and
discussion papers were included. The majority related to
relatives or visitors needs or experiences in ICU (n = 140).
The other publications related to relatives coping, satisfaction, psychological effects, ICU discharge and/or follow up
(n = 46). Most of the studies identified were descriptive and
mainly used a quantitative approach to identify relatives
needs in ICU, with a few examining psychological effects or
satisfaction. Fewer studies used an experimental design to
evaluate interventions, or used a qualitative approach to
explore relatives needs, experiences or coping. A total of 80
publications were selected for this review. These publications

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F. Paul and J. Rattray

were selected to incorporate a range of international publications that focused on relatives of patients in general and
specialized ICUs over the last three decades. This sample
included eight early papers that were published following the
initial development and revision of the CCFNI between 1979
and 1991, and 12 from the 1990s examining needs,
interventions and outcomes. A larger sample of 60 more
recent publications was included to represent the current
perspective on relatives needs and to include some of the
increasing literature about aspects such as emotional outcomes and interventions for relatives.

Results
Review limitations
Before setting limits to English language publications, several
abstracts were initially identified that would have met the
inclusion criteria had the full texts of the papers been
translated into English. Therefore the review was limited in
this respect. Owing to the large amount of publications
meeting the inclusion criteria (n = 186), only a sample of
these was included in our review, and therefore some
important papers may have been omitted. Furthermore, more
explicit criteria should have been used to select the papers for
inclusion as bias could inadvertently have been introduced.
The majority of the studies reviewed were based on the
CCFNI; therefore this is a limitation of the review. Few
randomized controlled trials (RCTs) involved ICU relatives
and, due to variations in methodology, a systematic review or
meta-analysis of RCTs was not appropriate. It is anticipated
that future studies using different approaches to investigate
the effectiveness of interventions will emerge as further
research into the care of ICU relatives is now widely
recommended. A formal assessment of the quality of the
individual research reports was not undertaken, although
the limitations of the included studies were considered and
are summarized below.

Limitations of the included studies

Several limitations of the studies reviewed were also considered. Studies of relatives needs were generally descriptive,
cross-sectional, retrospective and single centre in design and
they tend to include small sample sizes. Therefore, they are at
risk of being underpowered and the findings may be limited
and not generalizable. In addition, there is a lack of
consistency in the measures used to assess relatives psychological outcomes. These tend to be self-report screening
measures and therefore not diagnostic. More empirical work
278

is necessary either to replicate findings or to improve our

understanding of the effects of critical illness on relatives of
ICU patients.

Relatives needs
There is a growing body of literature about relatives of
critically ill patients which mainly focuses on their needs
during the initial phase of the patients illness in ICU (Molter
1979, Daley 1984, Coulter 1989, Leske 1991, Al-Hassan &
Hweidi 2004). The concept of relatives needs in critical
care settings has predominantly arisen from Molters review
of 1970s literature on the effects of serious illness on
relatives, which resulted in extending the role of the critical
care nurse to include the assessment of relatives needs when
caring for patients (Molter 1979). In practice, however,
relatives needs were rarely considered or identified at that
time. This led Molter (1979) to formally assess relatives
needs in ICU and to develop the Critical Care Family Needs
Inventory (CCFNI), a questionnaire in which relatives rank
the importance of each need from a list of 45 needs
statements, using a 4-point response format (ranging from
not important to very important). The CCFNI can be
modified to assess whether needs were met and, if so, by
whom, and whether relatives had any unlisted needs (Molter
1979, Leske 1986). The original, modified and translated
versions of the CCFNI have been used internationally and
have ranged from a 14-item to a 48-item instrument (Chartier
& Coutu-Wakulczyk 1989, Bijttebier et al. 2000, Lee & Lau
2003, Auerbach et al. 2005). Table 1 summarizes a selection
of early and recent international studies using the CCFNI.
Factor analysis has demonstrated the CCFNI has five
domains (Leske 1991):
Support (15 items), e.g. Resources and support systems
Comfort (6 items), e.g. Family members personal comfort
Information (8 items), e.g. Consistent, realistic and timely
information
Proximity (9 items), e.g. Personal contact and to be
physically and emotionally near the patient
Assurance (7 items), e.g. To feel hope for a desired outcome.
This five-factor structure was replicated by Bijttebier et al.
(2000) although all items did not load onto the same factors.
Reliability of this measure has been demonstrated by a
Cronbachs alpha statistic ranging from 061 to 088 (Leske
1991, Macey & Bouman 1991, Neabel et al. 2000, Lee &
Lau 2003, Auerbach et al. 2005).
From the use of this questionnaire, several relatives needs
have been identified (Miracle 2006). Although there is some

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consistency in how the importance of these needs have been

ranked, variations do occur (Lee & Lau 2003, Auerbach et al.
2005, Browning & Warren 2006). Items from the proximity
and assurance domains have been rated as most important
with having hope ranked as the most important need
(Molter 1979, Leske 1991). Similarly, items in the information and assurance domains have been ranked amongst the
most important needs (Zazpe et al. 1997, Chien et al. 2006).
Amongst other needs is to be called if patients condition
changes (Lee & Lau 2003). Additionally, how healthcare
professionals deliver information has been ranked highly.
Relatives want questions answered honestly, to be given
specific facts about a patients progress (Chien et al. 2006)
and to receive information in understandable terms (Auerbach et al. 2005). Close proximity is also important especially
during an acute phase of the experience (Alvarez & Kirby
2006). Variations in ranking may be attributed to the reason
for the patients admission whether it was planned or
unplanned (Lee & Lau 2003). The importance of these needs
may also vary depending upon a patients condition; for
example, relatives needs for hope and reassurance have been
associated with the length of time in ICU, but further
investigation regarding these relationships is recommended
(Davis-Martin 1994).
Verhaeghe et al. (2005a) reported that relatives rated their
comfort least important and this rating might illustrate the
emphasis placed on the patients care. Conversely, Auerbach
et al. (2005) found that many relatives were dissatisfied with
the lack of availability of a comfortable waiting room. Other
researchers have also found that hospital facilities were
amongst the least met needs (Zazpe et al. 1997, Lee & Lau
2003), yet were considered important (Deitrick et al. 2005).
Skelskey et al. (2005) suggested that relatives basic needs,
such as rest and food, must be met before they can
concentrate on their responsibilities towards the patient.
Although some relatives may perceive their comfort as a low
priority (Verhaeghe et al. 2005a), it is important to note that
relatives perceptions may differ according to their cultural or
ethnic background. Comfort is mainly perceived as a
physical aspect in Western studies, whereas other dimensions
of comfort may be important for some relatives, e.g. spiritual
comfort (Al-Hassan & Hweidi 2004).
Although the CCFNI can assist nurses to identify relatives
needs, it has some limitations. The CCFNI mainly identifies
informational and psychosocial needs; therefore other needs
may not be considered (Neabel et al. 2000). It assesses only
one relatives needs, thereby omitting the needs of other
family members, and it does not include the need to protect
the patient or the need to provide support and reassurance
(Verhaeghe et al. 2005a). The needs of relatives who are

Short- and long-term impact of critical illness on relatives

unable to visit the patient, e.g. because of a disability, are also

not included (Verhaeghe et al. 2005a,b). Furthermore, the
CCFNI does not account for differences between the
relationships or characteristics of relatives, e.g. age (Moggia
et al. 2005), and whether the relative is a partner, child, or
parent (Verhaeghe et al. 2005a). Gender differences also exist
with women reporting more needs, and more educated
relatives reporting less needs (Chartier & Coutu-Wakulczyk
1989, Bijttebier et al. 2000, Lee & Lau 2003). Healthcare
professionals have also identified unlisted needs (Takman &
Severinsson 2006), e.g. a relatives need to feel trust in the
healthcare providers ability. Local or cultural factors should
also be considered, as relatives needs may differ depending
on local practice, such as visiting hours (Dyer 1997) and
whether relatives contribute to patient care.
What seems clear from the current evidence is that
information about the patients clinical condition appears
to be the greatest universal need, regardless of the relatives
educational background or culture (Davis-Martin 1994,
Bijttebier et al. 2000, Auerbach et al. 2005, Verhaeghe
et al. 2005a, Alvarez & Kirby 2006, Chien et al. 2006). Much
of the reviewed literature identified studies that were
conducted outside the United Kingdom (UK) but the few
UK studies indicated similar relatives needs (Coulter 1989).
Although there is strong evidence to support the use of the
CCFNI within ICU settings internationally, unlisted needs
have been identified and further factor analytic work is
necessary to support a five-factor structure. In general, there
is consistency in how needs are ranked in importance and any
differences may be explained by variations in visiting policies
and changes in attitudes towards relatives since the measure
was developed.

Meeting relatives needs

Much of the research into relatives needs has replicated
Molters work (Dyer 1997). Although several recommendations have arisen from this research, previous authors have
rarely evaluated whether relatives needs were met (Dyer
1997, Browning & Warren 2006) or indeed how these needs
could be met (Miracle 2006). Molter (1979) recommended
that, as relatives have similar needs, perhaps support groups
facilitated by ICU staff might be appropriate. In a quasiexperimental study, Halm (1990) identified that relatives
(n = 25) allocated to a support group had a statistically
significant reduction in state anxiety in comparison with a
control group (n = 30) who received routine bedside support
during visiting hours. However, because of the small sample
size, the results may not be generalizable, and no further
studies appear to have evaluated support groups in ICU.

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280
Exploratory study
Nurses and physicians
(n = 97) working in
eight ICUs. This study
focused on quantitative
data obtained from a
larger study

Exploratory descriptive
study
Relatives (n = 30)
Data obtained 2436 hours
after patients ICU
admission

To identify and explore

the perceived met or
unmet needs of relatives
in a medical ICU
waiting room

Browning and
Warren (2006)
USA

Norway
Female (n = 39)
Male (n = 8)
Registered nurse (n = 43)
Physician (n = 5)
Enrolled nurse 0
Sweden
Female (n = 41)
Male (n = 7)
Registered nurse (n = 30)
Physician (n = 7)
Enrolled nurse 12
Age ranges 2050 (n = 87)
51 (n = 10)
Female (n = 21)
Male (n = 9)
Spouse (n = 14)
Adult child (n = 13)
Adult grandchild (n = 3)
Mean age 485 (SD 142)

Both groups were

similar at baseline
Female (n = 31)
Male (n = 35)
Parent (n = 21)
Spouse (n = 18)
Adult child (n = 13)
Sibling/other (n = 14)
Age range 1859

Quasi-experimental study,
pre- and post-test design.
Relatives (N = 66)
Control (n = 32) usual
information
Experimental (n = 34)
programme

To explore and describe

healthcare providers
perceptions of
relatives needs in ICU

To examine the effect of a

needs-based education
programme during the first
3 days of patients
admission to intensive
care (ICU)

Study aim

Participants
demographics

Study design,
sample

Takman and
Severinsson (2006)
Norway and Sweden

Chien et al. (2006)

Hong Kong

Author
(date)
Country

Table 1 A selection of studies using the CCFNI

Modified version of the 45-item

CCFNI (NMI Needs Met
Inventory)

Need for information ranked

highest (usually met/always met)
Need for comfort ranked lowest
(never met/sometimes met)
Recommendations: needs further
work to validate in specialized
ICUs, e.g. cardiac, neurological
ICUs

Experimental group statistically

significant increase in level of
satisfaction of needs met and
reduction in anxiety. Study
limitations small sample size,
single centre. Convenience
sample
Relatives in the experimental
group also received a pamphlet
and telephone follow-up within
the 3-day study period; therefore
the researchers were unable to
identify which specific
intervention was effective
Qualitative content analysis
additional needs not listed on
the CCFNI, e.g. a relatives
need to be prepared for the
consequences of critical illness
Chinese version (C-CCFNI) 45
item
Day 1 completed the C-CCFNI
and the Chinese State-trait
Anxiety Inventory (C-STAI)
Day 4 completed A-state scale
and C-CCFNI satisfaction scale

45-item version plus 1

open-ended item

Findings/
recommendations/
limitations

Version of Critical
Care Family Needs
Inventory (CCFNI)

F. Paul and J. Rattray

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Female (n = 26)
Male (n = 14)
Adult child (n = 33)
Spouse (n = 2)
Adult grandchild (n = 3)
Adult sibling (n = 2)
Age ranges 1848 (n = 32)
49 (n = 8)
Female (n = 130)
Male (n = 70)
Spouse (n = 60)
Adult child (n = 57)
Parent (n = 37)
Adult sibling (n = 18)
In-law (n = 12)
Other (n = 15)
Mean age 4792 (SD 1439)

Identify the needs of

families of hospitalized
critically ill patients

To identify the immediate

needs of relatives in a
general ICU and to
identify whether needs
were met

To examine the reliability

and validity of the
translated CCFNI
(Dutch) and the
relationship to
demographics

Lee and Lau (2003)

Hong Kong

Bijttebier et al. (2000)

Belgium

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ICU relatives (n = 200)
visiting the ICU patient
within the 72-hour
interval after admission

Descriptive cross-sectional
design. Relatives (n = 40).
Data collected between
24 and 72 hours of the
patients admission
to ICU

Survey relatives (n = 40).

Data obtained within
3 days of the patients ICU
admission and again at
ICU discharge

Al-Hassan and
Hweidi (2004)
Jordan

Participants
demographics

Female (65%)
Male (35%)
Each participant was the
designated spokesperson
for the family
Age range 1869 (med 45)
Descriptive cross-sectional Female (361%)
design across four hospital Male (639%)
units. Relatives (n = 158) Adult child (709%)
Parent (152%)
assessed within
Adult sibling (139%)
1872 hours of patients
Mean age 36 (SD 1238)
ICU admission

Study aim

Study design,
sample

Auerbach et al. (2005) To appraise the extent to

USA
which relatives
perceptions of their needs
were met in a surgical
trauma ICU

Author
(date)
Country

Table 1 (Continued)

Dutch version of the CCFNI

(45-item)

Chinese version of the CCFNI

(45-item plus 1 open-ended)

Reliability internal consistency

of four of five subscales
sufficiently high. Construct
validity same five factors as
Leske (1991). Age was positively
related to comfort the older the
relative, the more need for
comfort. General trend more
education, fewer needs

Admission most prominent

cluster of unmet needs included
information, explanations and
comfortable waiting area
Discharge trend to show that
overall needs were being met
To talk daily to doctor (most
important need). Highest ranked
needs assurance, information
and proximity. Lowest support
and comfort. Low reliability of
CCFNI subscales identified may
relate to cultural differences
Reassurance and proximity most
important/most met needs
categories. Most unmet needs
related to hospital facilities
Suggested that a number of items
were similar and require
modification
Modified 14-item version of
CCFNI (higher score = more
needs unmet)

45-item translated version

(Arabic)

Findings/
recommendations/
limitations

Version of Critical
Care Family Needs
Inventory (CCFNI)

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To identify relatives
needs, relationship
between anxiety and
perceived needs and
socio-demographic
factors having an
influence on needs
and anxiety

To identify relatives
perceived immediate
needs and their
perceptions of the
most likely person to
meet those needs

Daley (1984)
USA

Study aim

Chartier and Coutu

Wakulczyk (1989)
Canada

Author
(date)
Country

Table 1 (Continued)

Female 155
Male 52
Spouse (n = 51)
Parent (n = 19)
Adult child (n = 64)
Adult sibling (n = 25)
In-laws (n = 32)
Other (n = 16)
Age groups
1843 (n = 98)
4469 (n = 98)
70+ (n = 11)
Female (75%)
Male (25%)
Adult child (35%)
Spouse (35%)
Significant other (25%)
Parent (5%)
Age groups
1865 (83%)
>65 (17%)

Pilot study. ICU relatives

(n = 207) Interviews.
Average patient length of
stay at time of interview
was 48 hours

Exploratory study.
Relatives (n = 40)
assessed within the
72-hour period of the
patients ICU
admission

Participants
demographics

Study design,
sample

Findings/
recommendations/
limitations
Statistically significant relationship
between situational anxiety and
needs when age and gender were
taken into account. Women had
higher anxiety levels. Older
relatives had less anxiety. Anxiety
scores decreased with higher
education levels. Female relatives
had lower education levels than
male relatives

Top needs were relief of anxiety,

information, to be with the
patient and to be helpful to
the patient
Considerations some relatives
may not complete the data
if interviewed within the first
24 hours. Further assessment
recommended to identify if
relatives needs change after
the critical period in ICU

Version of Critical
Care Family Needs
Inventory (CCFNI)
French version of
CCFNI 48 items
(no indication of what the
additional three items
related to).
Anxiety STAI

Structured interview schedule

based on work of Molter (1979)
and others. 46 items six
categories

F. Paul and J. Rattray

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During ICU admission period, communication appears to

influence relatives perceptions of whether their needs are
met. Unmet needs reflect a lack of explanation about the
environment, medical equipment, why procedures were being
carried out and information about a patients condition
(Auerbach et al. 2005, Browning & Warren 2006). However,
the latter was not always a consistent finding (Browning &
Warren 2006). At the time of discharge this perception seems
to change (Alvarez & Kirby 2006), and Auerbach et al.
(2005) reported a trend towards increased satisfaction and
relatives overall needs being met, although this did not reach
statistical significance. A statistically significant increase in
relatives satisfaction was, however, identified in needs
relating to understandable explanations and staff being
interested in relatives well-being (Auerbach et al. 2005).
This may be partly explained by the changing phases a
relative experiences in ICU (Jamerson et al. 1996) as well as
their coping mechanisms (Patel 1996). Unmet needs may
relate to being able to talk about negative feelings such as
anger, guilt or the possibility of a patients death (Browning
& Warren 2006, Chien et al. 2006). It is not difficult to see
the possible link between relatives needs, how well these are
met, their own coping mechanisms and subsequent stress.
Studies using the CCFNI have recommended that nurses are
best placed to identify and meet relatives needs in ICU
(Blackmore 1996, Quinn et al. 1996, Lee & Lau 2003,
Browning & Warren 2006). A few studies have extended the
CCFNI to also compare relatives and nurses perceptions of
relatives needs, and have found that these perceptions were
generally similar (Quinn et al. 1996, Moggia et al. 2005).
Surprisingly, less experienced nurses may be more adept at
assessing relatives needs in ICU than more experienced nurses
(Moggia et al. 2005, Verhaeghe et al. 2005a). Chien et al.
(2006) suggested that some experienced nurses may make
assumptions about what relatives needs are, as opposed to
carrying out an individualized assessment. Although there
appears to be some consistency between the perceptions of
identified needs between relatives and nurses, some discrepancies have been identified regarding their perceptions of
whether these needs were actually met (Quinn et al. 1996,
Moggia et al. 2005). These findings are interesting, particularly since the introduction of specialist nursing roles, which
include meeting the needs of relatives throughout a patients
critical illness (Department of Health 2000, Russell 2000,
Scottish Executive 2000, Chaboyer 2006).

Interventions
There has been limited research into interventions to improve
communication between relatives and ICU staff (Auerbach

Short- and long-term impact of critical illness on relatives

et al. 2005), although the literature offers several recommendations, such as the provision of information, flexible visiting
and family conferences (Myhren et al. 2004, Miracle 2006).
However, a few experimental studies have evaluated the
effectiveness of providing information in the form of pamphlets in conjunction with structured meetings, or tailored
information and planned telephone calls. These interventions
have been shown to increase relatives satisfaction, reduce
state anxiety and improve comprehension of information
(Medland & Ferrans 1998, Azoulay et al. 2002, Chiu et al.
2004, Chien et al. 2006).
Family conferences, which include audiotaped meetings
with doctors, patients and relatives, have been successfully
introduced in oncology settings and this model may be
appropriate for ICU families (Auerbach et al. 2005). Other
recommendations include the provision of accurate and
timely information during the critical phase, and taking a
more proactive approach to assessing family needs during a
patients acute and recovery phases (Johansson et al. 2004,
Verhaeghe et al. 2005a).
It is increasingly recognized that ICU relatives may require
more information than is sometimes provided, and this has
led to the development of interventions to empower families,
e.g. family information leaflets (Azoulay et al. 2002), and
information websites for ICU patients and relatives (Ridley
2004). Nevertheless, it is important to note that, in some
countries, there may be conflict about the amount and type of
information given to relatives. During observations and
interviews with nurses in Mallorcan ICUs, Zaforteza et al.
(2005) identified that physicians controlled the information
given to relatives, and nurses were expected to only provide
basic information, which often created tension or frustration
between staff and relatives.
Improved ICU discharge planning is frequently recommended to prepare patients and relatives transferring to a
ward (Odell 2000, Chaboyer et al. 2005). The ICU transfer is
mainly perceived as a positive step, but this transition period
may create anxiety for families owing to changes in levels of
care (Streater et al. 2001, McKinney & Melby 2002).
Although many ICU staff consider that improved discharge
planning is becoming a routine component of care, the
evidence of its effectiveness is mainly anecdotal (Chaboyer
et al. 2005). As part of an improved discharge procedure,
relatives should receive written information to supplement
nurses oral communication (Coulter 1989, Tracy et al. 1999),
and indeed several studies have evaluated written materials in
this context (Paul et al. 2004, Mitchell & Courtney 2005).
Positive outcomes regarding relatives and patients satisfaction with the written information have been identified (Paul
et al. 2004, Mitchell & Courtney 2005).

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F. Paul and J. Rattray

Several initiatives have been developed in the United

States of America (USA) to support families, e.g. the
Critical Care Family Assistance Programme, which includes information kiosks and family education (Lederer
et al. 2005). This approach has been positively evaluated,
particularly regarding communication between staff and
relatives (Dowling & Wang 2005, Skelskey et al. 2005), and
now requires further work to assess its applicability in other
countries. Clinical Practice Guidelines for Supporting Families in ICU have also been developed which encompass
initiatives including family coping, cultural support and
flexible visiting policies (Davidson et al. 2007). Although in
their infancy, it is expected that these guidelines will
improve the quality of care for patients and relatives during
and following ICU stay.
Few researchers have explored the needs of and support for
relatives who are caring for patients recovering from critical
illness at home (Kleinpell 2006). Patients often have unrealistic expectations of what can be a prolonged recovery time
(Rattray et al. 2005), which can create tension between
patients and relatives. Recommendations that require further
exploration include family-centred rehabilitation, improved
respite and home care and follow-up services (Angus &
Carlet 2003, Cameron et al. 2006, Kleinpell 2006).

Satisfaction
Family satisfaction is an important outcome measure of the
quality of care (Wasser et al. 2001, Wall et al. 2007). FoxWasylyshyn et al. (2005) suggested that relatives satisfaction
is closely related to fulfilment of their needs and expectations
in ICU. However, studies using the CCFNI do not always
include whether relatives considered unmet needs to be
important, or whether they perceived them as real needs
(Dyer 1997). Therefore, simply meeting relatives needs may
be insufficient because unmet needs do not necessarily result
in dissatisfaction. Relatives are generally satisfied with both
overall care and decision-making (Heyland et al. 2002), but
factors which can influence communication, e.g. relatives
misunderstandings, must be addressed. Azoulay and Pochard
(2002) advised that, in addition to satisfaction, relatives
comprehension of information and symptoms of anxiety and
depression should also be assessed. Similarly, contradictory
information received from different healthcare professionals
may cause dissatisfaction for relatives (Azoulay et al. 2001).
One possible solution for ensuring consistency with information giving is physician and nurse dyads (Azoulay &
Pochard 2002).
The important issues seem to be about completeness
of information, courtesy, compassion and friendliness
284

(Auerbach et al. 2005) and the level or amount of patient

care. Relatives tend to be more satisfied with aspects of care
regarding nursing skill and competence, the respect given to
the patient, and pain management (Heyland et al. 2002).
Aspects that demonstrate least satisfaction are the waiting
room atmosphere and physician communication (Heyland
et al. 2002); however, these aspects are generally rated as less
important needs.
High levels of optimism are also strongly related to greater
satisfaction with needs met and interpersonal relations with
staff. Encouraging relatives to focus on positive aspects, e.g.
participation in the patients care, might help to divert them
from focusing on the negative aspects of the critical care
experience (Auerbach et al. 2005). However, research into
involving relatives in care in ICU is limited, and some issues
require further investigation. Some patients and relatives, for
example, may not feel comfortable with this aspect, but may
feel obliged to participate in care to help reduce nurses
workload (Hammond 1995).

Psychological and other outcomes

The experience throughout a patients illness may impact on
relatives psychological well-being (Hughes et al. 2005,
Martn Rodrguez & Perez San Gregorio 2005, Kleinpell
2006). Furthermore, relatives emotions may positively or
negatively influence patients responses and recovery (Tracy
et al. 1999, Maddox et al. 2001); therefore it is important to
identify such outcomes and factors that might affect them
(Azoulay & Pochard 2002). Table 2 shows a selection of
studies assessing psychological outcomes.
Perhaps not surprisingly, during the early ICU period
moderate to high levels of anxiety, depressive symptoms and
posttraumatic stress are exhibited (Martn Rodrguez & Perez
San Gregorio 2005), predominantly in women and spouses
(Auerbach et al. 2005, Pochard et al. 2005). This finding may
partly explain why others have found that female relatives
reported more needs (Chartier & Coutu-Wakulczyk 1989,
Lee & Lau 2003). Signs of emotional distress are likely to
reduce for most relatives over time, which may be dependent
upon their coping or social support mechanisms. However,
for some, these symptoms will not reduce (Azoulay et al.
2005). Studies using different approaches have similarly
found that relatives providing care after ICU had high levels
of emotional distress or anxiety, particularly when the
respective patients reported increased symptoms of anxiety
or depression (Jones et al. 2004, Young et al. 2005, Cameron
et al. 2006). One of the problems in investigating this group is
that pre-ICU status is difficult to determine (Jones et al. 2004,
Cameron et al. 2006). However, relatives trait anxiety

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 2007 The Authors. Journal compilation  2007 Blackwell Publishing Ltd

Female (n = 16)
Male (n = 16)
Participants were first degree
relatives (spouses or adult
children)
Mean age
402 (SD 138)
Age range 2173

Relatives (n = 32) from two ICUs were

assessed twice, within 1 week of the
patients ICU admission and again
at ICU discharge

Prospective study
Relatives (n = 177) of patients admitted
to a trauma ICU assessed approx. 7 days
after ICU admission, and again 2 years
later (n = 76)

Survey. Relatives (n = 40) completed

measures shortly after patients ICU
admission and shortly after discharge

Longitudinal study. Relatives (n = 284)

interviewed via telephone 90 days after
the patients ICU discharge (n = 228) or
death (n = 56)

Paparrigopoulos
et al. (2006)
Greece

Pillai et al. (2006)

India

Auerbach et al.
(2005)
USA

Azoulay et al. (2005)

France

Each participant was the

designated spokesperson
for the family
Female (65%)
Male (35%)
Age range 1869 (med 45)
Female (n = 192)
Male (n = 92)
Spouse (n = 135)
Adult child (n = 37)
Parent (n = 67)
Other family member (n = 41)
Age 51 (4161)

Impact of event scale (IES).

An IES score of >30 was
considered a cause for
concern, Short-form 36,
Hospital Anxiety and
Depression Scale (HADS)

Acute stress scale (ASS)

Brief symptom inventory (BSI)
Impact message inventory
Life orientation test

Impact of Event Scale (Revised)

(IES-R) an IES-R score of
>26 was considered a cause
for concern

Center for Epidemiology

Studies Depression Scale
(CES-D)
Positive Affect Scale
Short Form 36
Beck Depression Inventory II
Caregiving experience and
psychosocial resources
CES-D
State-Trait Anxiety Inventory
(STAI)
Impact of Event Scale (IES)

Female (n = 32)
Male (n = 10)
Spouse (n = 31)
Parent (n = 11)
Mean age 529(SD 136)

Cross-sectional survey which was part of

a longitudinal cohort study of patients.
Relatives (caregivers) (n = 42) assessed
approximately 2 years after patients
discharge from intensive care unit (ICU)

Cameron et al.
(2006)
Canada

Females (n = 92)
Males (n = 85)
Relatives were spouses,
parents or siblings.
Age 18 years or older

Measures/instruments

Participants demographics

Design, sample size

and method

Author (date)
Country

Table 2 Selection of studies assessing the psychological/other effects of critical illness and/or ICU on relatives

Trait anxiety the most statistically

significant predictor of the severity of
depressive symptoms and the single
predictor of the development of
posttraumatic stress (PTS).
Admission High levels of anxiety,
depressive symptoms (97%) and
posttraumatic stress (81%) were identified.
Discharge Statistically significant
reductions in symptoms. Some relatives
showed symptoms of depression (87%)
and PTS (59%)
Day 7 of ICU admission: 3454%
(N = 177) had moderate and 1941% had
severe symptoms of posttraumatic stress
disorder (PTSD). At 2-year follow-up:
1214% (n = 76) had moderate and
45% had severe symptoms of PTSD.
No differences between males and
females IES-R scores
Admission high levels of Acute Stress
Disorder symptoms (measured by ASS)
and Anxiety (measured by BSI) identified
Discharge statistically significant reduction
in ASD and BSI anxiety subscale scores at
discharge
33% of relatives had IES scores >30,
indicating PTS reaction and high risk of
PTSD. This was associated with factors such
as incomplete information received from
staff in ICU, shared decision-making, death
of the patient and/or sharing in end-of-life
decisions

Levels of emotional distress were higher

than a national sample of American
women

Findings

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285

286

Pre- and post-test design. (n = 66).

To evaluate an education programme
for relatives in ICU
Control (n = 30) received routine
information
Experimental (n = 36) received education
programme within the first 2 days of the
ICU admission

Chiu et al. (2004)

Hong Kong

Relatives (n = 57) of neurosurgical ICU

patients
Data obtained during the ICU admission
period (n = 57) and again 4 years later
(n = 57)

Martn Rodrguez &

Perez San Gregorio
(2005)
Spain

Cross-sectional survey. Relatives assessed

at ICU follow-up clinic (n = 20) and
relatives assessed at postcardiac surgery
programme (n = 15)

Prospective multi-centre study. Relatives

(n = 544) assessed 9 (518) days after
patients ICU admission. 91 relatives of
decedents and 453 relatives of survivors
were assessed

Pochard et al. (2005)

France

Young et al. (2005)

UK

Design, sample size

and method

Author (date)
Country

Table 2 (Continued)

Relatives achieved high scores during

admission period for symptoms such as
anxiety depression, apathy withdrawal and
paranoia in comparison with scores
obtained 4 years later
Relatives scores for fear of their own death
were higher at 4 years in comparison with
their scores during patients ICU admission
period
Relatives were more anxious than patients
ICU relatives were more depressed than
cardiac surgery relatives

Statistically significant reduction in

anxiety (Experimental group)

Psychosocial questionnaire
developed by authors
Clinical analysis questionnaire
Family environment scale
Fear of death scale

C-CFNI (Chinese version)

State-Trait Anxiety Inventory
(Chinese version)

HADS

22% (72/326) of ICU survivors relatives had

symptoms of anxiety; 26% (32/124) of ICU
survivors relatives had symptoms of
depression. These symptoms were also
associated with patients age and severity
of illness. Spouses were more likely to have
symptoms of anxiety or depression

HADS

Female (n = 190)
Male (n = 354)
Spouse (n = 188)
Adult child (n = 151)
Parent (n = 103)
Adult sibling (n = 38)
Other relative (n = 52)
Friend (n = 14)
Median age 47 (3560)
Female (474%)
Male (526%)
Parent (491%)
Spouse (193%)
Adult sibling (175%)
Adult child (88%)
Other (53%)
Mean age 4047
Both groups were similar at
baseline
ICU close relatives
Female (n = 15)
Male (n = 5)
Mean age 5330 (SD 1394)
Cardiac surgery relatives
Female (n = 12)
Male (n = 3)
Mean age 60 (SD 1251)
Details of descriptive data were
not provided
Relatives were mainly parents,
spouses and siblings; and
there were slightly more
female relatives in both
groups

Findings

Measures/instruments

Participants demographics

F. Paul and J. Rattray

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Design, sample size

and method

RCT. ICU relatives (n = 104) from three

hospitals. Intervention group (n = 58
at baseline) (n = 47 at 6 months).
Control group (n = 46 at baseline)
(n = 37 at 6 months). Data obtained
during hospital ICU follow-up and 2 and
6 months at a follow-up clinic.
Intervention group received standard
in-hospital follow-up and two visits to
an ICU follow-up clinic after discharge

Prospective cohort study. Relatives

(caregivers) (n = 115) of patients who
required mechanical ventilation
>48 hours in an ICU. Caregivers were
assessed 2 months after patients
mechanical ventilation began

Prospective longitudinal descriptive study.

Relatives (n = 135) (caregivers)
interviewed within 2 weeks of patients
hospital discharge (n = 135) and
6 months later (n = 77). Patients were
discharged to home (31%) or care
institution (69%)

Author (date)
Country

Jones et al. (2004)

UK

Im et al. (2004)
USA

Douglas and Daly

(2003)
USA

Table 2 (Continued)

HADS
IES an IES score of >19 was
considered a cause for concern
for signs of posttraumatic
stress
Short-form 36

No information provided
of gender of relatives
Intervention group
Spouse/partner (n = 29)
Adult child (n = 12)
Parent (n = 10)
Sibling (n = 4)
Grandchild/niece (n = 3)
Mean age 62 (SD 17)
Age range 1782
Control group
Spouse/partner (n = 25)
Adult child (n = 8)
Parent (n = 9)
Sibling (n = 3)
Grandchild/niece (n = 1)
Mean age 60 (SD 154)
Age range 1880
Female (n = 108)
Male (n = 27)
Spouse (n = 60)
Parent (n = 22)
Adult child (n = 21)
Friend (n = 1)
Other (n = 11)
Mean age 529 (SD 142)
Female (n = 99)
Male (n = 36)
Spouse (n = 59)
Adult child (n = 41)
Sibling (n = 12)
Other relative (n = 11)
Other (n = 12)
Mean age 541 (SD 153)

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CES-D, Caregiver Overload
Scale Objective and Subjective
Burden Scale
Physical health

CES-D
Caregiver activity.
Patient behaviour frequency
and caregiver reaction to these
behaviours

Measures/instruments

Participants demographics

A statistically significant reduction in

caregivers (n = 14) physical health scores
was identified at 6 months. 50%
experienced symptoms of depression at
hospital discharge. 12% (n = 135) were
classified as severely depressed at discharge
and 16% (n = 77) were classified as severely
depressed at 6 months
Caregivers providing care to patients in an
institution reported higher depression and
overload scores than those at home,
6 months later

Approximately half of the patients (N = 115)

were at home at 2 months, and the others
were in an institution. Approximately
one-third of caregivers (n = 39) were at risk
of clinical depression as measured by
the CES-D

No statistically significant differences were

found between groups in any of the
measures at baseline, 2 and 6 months
49% of relatives had IES score>19. At
baseline (using a cut-off HADS score of
11 on either scale), 58% of the
intervention group and 62% of the control
were anxious; and 22% of the intervention
and 31% of the control group were
depressed
An association between IES/HADS scores of
relative and patient, i.e. if patient was
anxious so was the relative

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288

Average time spent providing care

approximately 40 hours per week (range
0172). Male caregivers received more
family support, but experienced statistically
significant increases in caregiver burden
than female carers. Positive correlation
between family obligation and caregiver
burden. Assistance from family, friends
and healthcare community services were
generally minimal
Caregiver Burden Inventory
Filial Obligation scale
Social Support Scale
Self Efficacy Scale
Female (n = 51)
Male (n = 20)
Spouse (n = 44)
Parent (n = 8)
Adult child (n = 17)
Other (n = 2)
Mean age 518 (SD 143)
Postal survey. Relatives (caregivers)
(n = 71) assessed 3 months after
patients ICU discharge
Foster and Chaboyer
(2003)
Australia

Measures/instruments
Participants demographics
Design, sample size
and method
Author (date)
Country

Table 2 (Continued)

Findings

F. Paul and J. Rattray

measures obtained during ICU admission period have been

identified as a statistically significant predictor of the severity
of depressive symptoms and the development of posttraumatic stress reaction (Paparrigopoulos et al. 2006).
Women tend to be the main caregivers for patients after
ICU discharge (Douglas & Daly 2003, Foster & Chaboyer
2003, Im et al. 2004, Cameron et al. 2006), although this
tendency may vary in some specialties, e.g. trauma or
neurosurgical ICU [Martn Rodrguez & Perez San Gregorio
2005, Pillai et al. 2006 (see Table 2)]. Cameron et al. (2006)
explored the impact on relatives of patients recovering from
acute respiratory distress syndrome (ARDS), and demonstrated that relatives experienced psychological effects which
influenced their quality of life, career and lifestyle up to
2 years after hospital discharge. Others have identified
similar findings, regardless of the patients location after
ICU, e.g. home or a care institution (Douglas & Daly 2003,
Im et al. 2004).
Effective interventions are necessary for supporting relatives, particularly because they are likely to care for a patient
during a slow and sometimes difficult recovery period (Pochard
et al. 2005). Needs-based education programmes have been
effective in reducing relatives anxiety in ICU (Chiu et al. 2004,
Chien et al. 2006), but further research is recommended to
identify which particular aspects of such programmes have
been effective. In contrast, Jones et al. (2004) found that the
provision of written information about recovery after ICU did
not influence relatives psychological outcomes. Furthermore,
it was identified that some relatives remained anxious and met
criteria for posttraumatic stress disorder (PTSD). Other
researchers have also identified that ICU relatives exhibit
symptoms of PTSD, both short- and long-term, therefore early
detection of such symptoms and further development of
interventions for relatives are required [Jones et al. 2004,
Paparrigopoulos et al. 2006, Pillai et al. 2006 (see Table 2)].
Support mechanisms may be vital to help a relative and,
indirectly, a patients recovery after hospital discharge, yet
caregivers may not be able to access assistance from family,
friends or healthcare community services (Maddox et al.
2001, Foster & Chaboyer 2003). There may be several
reasons for this; for example, they may not be offered help
(Chaboyer 2006), and some may either be unaware of, or
may not want, assistance.
Having a relative in ICU might not always be a negative
experience. Some caregivers have reported a greater sense of
personal growth and received more social support, resulting
in better psychosocial well-being. Although interventions for
caregivers generally focus on alleviating negative aspects,
perhaps these positive aspects should be highlighted for
future caregivers (Cameron et al. 2006). Maddox et al.
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JAN: REVIEW PAPER

What is already known about this topic

The impact of critical illness and intensive care can
affect patients psychological and physical well-being
both during and after their recovery, and may also
have an impact on their relatives.
Because of the nature of the critical illness and the
intensive care environment, relatives have specific
needs.
It is not clear whether relatives needs are always met
in intensive care units, or whether there are effective
interventions to support them during and after patients critical illness.

What this paper adds

Although the Critical Care Family Needs Inventory has
been validated in several international studies, local or
cultural differences may influence relatives individual
needs in intensive care.
Some relatives may have particular needs that are not
included in the Critical Care Family Needs Inventory,
and this must be considered when developing interventions to support them during the intensive care
experience.
Relatives may experience negative psychological consequences of having a critically ill family member in
intensive care and further research is needed to identify
supportive interventions, particularly throughout the
recovery period after intensive care.

(2001) suggested that relationships between relatives and

patients often strengthen as a consequence of the critical
illness. Alternatively, caregivers may have developed coping
mechanisms which assist them in caring for their relative
(Foster & Chaboyer 2003).

Coping
Although our understanding of relatives needs has increased,
it is important to identify strategies to help them cope
throughout a patients illness and recovery (Neabel et al.
2000, Chui & Chan 2007). Relatives may use a range of
gard &
coping mechanisms to adapt to the situation (A
Harder 2007), and these may vary according to sociodemographic and cultural factors (Chui & Chan 2007),
health status, previous experience of ICU and the patients
psychological status (Waters 1999, Johansson et al. 2004,
Verhaeghe et al. 2005a). Despite feelings of uncertainty and

Short- and long-term impact of critical illness on relatives

turmoil, relatives use mechanisms such as enduring, suppressing anxiety, information seeking and focusing on the
immediate (Johansson et al. 2002, Agard & Harder 2007).
Jamerson et al. (1996) similarly described phases that
relatives may experience which appear to relate to coping,
e.g. hovering, searching for information, tracking, gathering
resources within themselves or others and seeking social
support. Therefore, nurses could perhaps assess and encourage relatives coping strategies (Patel 1996, Johansson et al.
gard & Harder 2007). Hope seems to be a
2004, A
prerequisite for relatives coping during a patients critical
illness and instilling hope may have an empowering effect on
their coping ability (Patel 1996). The main hope-inspiring
strategies for ICU relatives relate to religious/spiritual activities, support from significant others, positive relationships
with caregivers, devotion (to the patient), optimism, proximity to the patient, talking to others and distraction (Patel
1996, Johansson et al. 2002).
Johansson et al. (2004) generated a theoretical model of
relatives coping during patients recovery. Four coping strategies were identified, i.e. volunteering (obligation to care for
the patient), accepting (relatives sense of humanity for the
patient), modulating (involving others in care, therefore
addressing their own personal need for recreation) and
sacrificing (a genuine desire to help the patient despite knowing
that this would affect their own well-being). Some of these
mechanisms link with the work of Foster and Chaboyer (2003),
such as family obligation and the amount of time spent caring
for a patient after hospital discharge. Johansson et al. (2004,
2006) recommend that their theoretical model could be applied
during discharge planning, so that a patients and their
relatives needs and coping can be addressed.

Discussion
Most of the needs of relatives of critically ill adults during
ICU experience have been identified internationally using the
CCFNI. Whilst relatives generally perceive that their needs
are being met, this perception is not always consistent.
Although the CCFNI has been widely used, some limitations
have been highlighted; therefore, further exploration of
relatives specific needs using different methods is required
(Dyer 1997). There is increasing evidence that relatives may
experience psychological consequences; therefore factors
associated with these effects should be identified early
(Azoulay et al. 2005). Limited research exists into interventions for supporting relatives; although a few interventions to
assist them during ICU stay have shown positive effects, and
recommendations for supporting the family after discharge,
e.g. family-centred rehabilitation, seem promising.

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289

F. Paul and J. Rattray

Although it seems pertinent to meet relatives needs, it is

important to consider situations where this may create conflict.
Hope has been identified as an important need for relatives,
but it may be difficult for nurses to inspire hope when a
patients prognosis is poor, especially when nurses are trying to
meet other needs, e.g. to provide honest information. As a
result, findings from studies should be considered in context
before they are applied in practice (Dyer 1997). Furthermore,
cultural aspects may also influence whether nurses can fully
meet relatives needs for information (Zaforteza et al. 2005).

Conclusion
Although the CCFNI has greatly contributed to our knowledge of relatives needs, some relatives may have unidentified
needs, particularly after ICU discharge. Relatives may experience negative psychological outcomes, which may be
influenced by a patients experiences and recovery. Therefore,
in order to develop effective interventions, nurses should
consider additional methods for assessing and meeting
relatives needs, both short- and long-term. This is important
if we are to meet relatives needs throughout all phases of a
patients critical illness. Given the effects of critical illness on
relatives, a theoretical framework for assessing relatives
coping is worthy of further research.

Author contributions
FP and JR were responsible for the study conception and
design. FP and JR were responsible for the drafting of the
manuscript. FP and JR performed the data collection and
data analysis. FP and JR made critical revisions to the paper.

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