Illness Representations of Injury: A Comparison of Patients
and Their Caregivers
Bih-O Lee, PhD, RN1 , Jun-Yu Fan, PhD, RN2 , Chang-Chiao Hung, PhD, RN3 , Hsiang-Chu Pai, PhD, RN4 ,
& Pi-Ling Chou, PhD, RN5
1 Associate Professor & Associate Research Fellow, Department of Nursing & Nursing Department, Chang Gung University of Science and Technology &
Chia-Yi Chang Gung Memorial Hospital, Taiwan
2 Associate Professor & Associate Research Fellow, Department of Nursing & Nursing Department, Chang Gung University of Science and Technology,
Linkou Campus & Linkou Chang Gung Memorial Hospital, Taiwan
3 Assistant Professor, Department of Nursing, Chang Gung University of Science and Technology, Chia-Yi Campus, Taiwan
4 Assistant Professor, School of Nursing, Chung Shan Medical University, Taiwan
5 Assistant Professor & Nursing Supervisor, College of Nursing & Department of Nursing, Kaohsiung Medical University & Kaohsiung Medical University
Chung-Ho Memorial Hospital, Kaohsiung, Taiwan
Key words
Caregivers, comparative survey, illness
representations, injury
Dr. Pi-Ling Chou, Assistant Professor, School of
Nursing, Kaohsiung Medical University, 100,
Shi-Chuan 1st Rd., Kaohsiung City 807, Taiwan,
R.O.C. E-mail:
Accepted: February 22, 2016
doi: 10.1111/jnu.12205
Purpose: This study examined the differences between illness representations
of injured patients and those of their caregivers.
Design: A comparative descriptive survey was used.
Methods: The study setting was the surgical wards of a teaching hospital in
Taiwan. Data were collected at 3 to 6 months after hospital discharge. Participants were 127 pairs of injured patients and their caregivers. The participants completed sociodemographic data and completed the Chinese Illness
Perception Questionnaire Revised-Trauma, which is composed of eight subscales. Clinical data of the injured patients was obtained from medical records.
Results: Injured patients and their caregivers were pessimistic about the injury. Patients perceived significantly more physical symptoms than caregivers
did. Caregivers for patients who were severely injured or admitted to an intensive care unit (ICU) had more negative perceptions than did those who
were providing care for moderately injured patients or those not admitted to
an ICU. Caregivers who did not share their caring responsibilities had more
negative perceptions than did those who shared their caring responsibilities
with others.
Conclusions: This study found that patients and caregivers had negative illness representations several months after injury. Caregivers who provided care
for severely injured patients or who did not share caring responsibilities perceived different extents of illness perceptions about the injury. The interventions should highlight the need to assist patients and caregivers after injury.
Clinical Relevance: Exploring the discrepancies in illness perceptions between injured patients and their caregivers can help clinicians to provide individualized care, and to design interventions that meet patients’ and caregivers’
Injury is a significant cause of mortality and morbidity. The complicated consequences of injury have received increasing attention, as injuries are predicted to
be the world’s fourth leading cause of disability by 2030
(Mathers, Boerma, & Ma Fat, 2009). The medical costs
for people with injuries are increasing; these costs may
not include the substantial costs associated with family or
community care. Patients who suffer from an injury experience short-term and long-term disabilities, and those
disabilities have been identified systematically (Holtslag,
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Lee et al.
Post, Lindeman, & Van der Werken, 2007; Lee, Chaboyer,
& Wallis, 2010). However, the totality of problems experienced by an injured individual may result in expanded
responsibilities for the patient’s whole family.
Clinicians have become increasingly aware that injury has a long-term adverse impact on family members
because they have a critical supporting role in the recovery process (Kreutzer, Marwitz, Godwin, & ArangoLasprilla, 2010). To enable better outcomes for injured
patients and their caregivers, it is necessary to understand the problems faced by patients in healing from
an injury, and also to understand the related needs
of their caregivers (Griffin, Friedemann-Sanchez, Hall,
Phelan, & van Ryn, 2009; Kreutzer et al., 2010). The
Common Sense Model of Illness Representation (CSMIR)
provides a structure for understanding how an individual perceives the threats of illness and how those
perceptions influence the individual’s health behaviors
(Leventhal, Leventhal, & Cameron, 2001). Illness representation is the central stage of the CSMIR. Five organized components of cognitive beliefs are included in
illness representations (Leventhal et al., 2001). The first
component, identity of the illness, is used to identify
the physical symptoms of an illness. The second component, timeline belief, reflects the perceived progress
and duration of an illness (acute, chronic, or cyclic). The
third component, consequences, is the experienced consequences of the illness affecting the individual’s work,
family, lifestyle, and finances. The fourth dimension is
control or cure, which is associated with perceptions of
how the illness is susceptible to personal control, and
whether the illness can be cured or treated. Causal beliefs, the last component, relates to the perceived causes
of the illness (Leventhal et al., 2001)
Illness representation is described as the internal processes by which individuals create the definitions or the
representations of a health threat. An individual’s illness
representations may influence his or her responses to
illness-related problems via parallel cognitive and emotional representations (Leventhal, Brissete, & Leventhal,
2002). The emotional pathway interacts with the cognitive pathway when an individual is forming reactions
to the health-threatening experience (Leventhal et al.,
2002). Moreover, illness representations consist of perceptions of the given threat to the individual’s health
based on bodily sensations or symptoms. These symptoms
are produced using information from the environment,
such as information provided by significant others or the
individual’s own past experiences with illness (Leventhal
et al., 2001). Hence, both internal and external stimuli
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Illness Perceptions in Patients and Caregivers
invoke illness representations from specific health-related
situations. Once these representations are formed, coping
and appraisal occur. In summary, illness representations
assist an individual with the process of self-regulation,
which is defined as the regulation of cognitive and emotional perceptions, including the development of coping
behaviors used when adapting to an illness (Leventhal
et al., 2002).
Researchers have sought to understand the factors
that influence the development of illness representations. For example, positive illness representations have
been found to be associated with better self-regulation
in patients with injury (Lee et al., 2010), and with better self-care in patients with heart failure (MacInnes,
2013). Studies have also linked illness representations
to different health-related outcomes such as self-efficacy
(Lau-Walker, 2004) and quality of life (Lee, Chaboyer,
& Marianne, 2008). Illness representations have been
shown to be related to certain characteristics such as age
(Gump et al., 2001), gender (Lau-Walker, 2004), and
length of hospital stay (Lee et al., 2008).
Previous studies have indicated that injured patients
do hold illness representations related to their injury
(Chaboyer, Lee, Wallis, & Chien, 2012; Lee et al., 2010).
A cohort study conducted follow-ups with 114 injured
patients after their injuries, and the responses of these
patients indicated that some components of their illness
perceptions had changed at either 3 months or 6 months
after hospital discharge. First, the patients experienced
many injury-related physical symptoms before hospital
discharge, but then the patients reported only two to
three symptoms at 3 to 6 months after injury. Second,
the patients did not have strong perceptions about the
reasons for the injury. The majority of the patients were
injured by a car accident or a fall, but they could not
identify a cause, such as “bad luck” or “personal behavior” that may have led to the injury. Third, the patients
had moderate to higher degrees of emotional reactions
toward an injury. Fourth, the patients did not have strong
ideas about the timeline to recover from an injury. Last,
the patients perceived several consequences brought on
by the injury at 3 to 6 months after injury, but they believed their injury could be controlled or cured and they
had the ability to comprehend the conditions for their injury (Lee et al., 2010). Another study has shown that
the predictors of quality of life in injured patients are
their physical symptoms, their timelines to recovery, and
their emotional representations at 6 months after injury
(Chaboyer, Lee, Wallis, Gillespie, & Jones, 2010).
Researchers have shown interest in discrepancies in
illness representations between patients and their caregivers. For example, caregivers for recurrent psychosis
patients believed that psychosis was chronic in nature.
Illness Perceptions in Patients and Caregivers
Their perceptions of psychosis differed from those of
the patients themselves in that they saw psychosis as
having more consequences and being less controllable.
Having more negative perceptions in the control or cure
dimension caused these caregivers to experience substantial distress and anxiety, as well as lower self-esteem
(Kuipers et al., 2007). Those caring for patients with
adolescent diabetes, meanwhile, saw diabetes as being
more chronic and less controllable than did the patients
themselves. Also, they had more negative emotional
reactions than the patients (Olsen, Berg, & Wiebe, 2008).
Moreover, caregivers were more pessimistic than stroke
patients about the post-stroke symptoms, the timeline
for recovery, and the consequences related to stroke
(Twiddy, House, & Jones, 2012). Research has demonstrated that caregivers’ illness representations of negative
consequences, emotional reactions, and controllability
of an illness are correlated with their perceived care
burden (Rexhaj, Python, Morin, Bonsack, & Favrod,
2013). In another study, three types of negative illness
perceptions, namely, emotional representations, cyclical
timelines, and consequences, were found to be significant determinants of quality of life among caregivers for
injured patients. The findings indicated that when
caregivers perceive many physical symptoms, many
consequences, negative emotions, and that recovery
would take a long time, it may reduce their quality of
life. In contrast, enhancing the positive perceptions of
caregivers, including the belief that the injury is well
controlled or can be cured, may improve their quality of
life (Wu, Lee, Hsu, Huang, & Bai, 2014).
Illness representations have been found to influence
health-related outcomes in injured patients (Lee et al.,
2010) and in caregivers for injured patients (Wu et al.,
2014). Previous studies have concluded that discrepancies between the illness perceptions of patients and
their caregivers may have negative impacts on caregivers in noninjury patient groups (Kuipers et al., 2007,
Olsen et al., 2008). Draper and Ponsford (2009) have
reported that caregivers for patients with a head injury
could effectively reflect the patient’s daily functioning and the consequences of the injury. Thus, caregiver’s health outcomes may be associated with patient’s
postinjury conditions, and potentially could be used to
improve the patient’s outcomes. Exploring the discrepancies between the illness perceptions of injured patients
and their caregivers may provide a way of resolving the
impacts caused by an injury. This study tested the following hypotheses: (a) Injured patients and their caregivers would have different illness representations related
to an injury; (b) injured patients’ demographic and clinical characteristics would be related to caregivers’ illness
Lee et al.
representations; and (c) caregivers’ own demographic
characteristics would be related to their own illness
This comparative descriptive survey compared illness
perceptions between injured patients and caregivers at 3
to 6 months after hospital discharge.
The participants in this study consisted of patients with
injury and their caregivers. The participants were enrolled using convenience sampling, and were recruited
from a teaching hospital in Taiwan. Injury type and severity will likely influence patient outcomes (Halcomb, Daly,
Davidson, Elliott, Griffiths, 2005); thus, recovery among
some patient subgroups, such as patients with burns or
brain injuries, may be unique to that subgroup. Thus, this
study focused on general injury patients. The inclusion
criteria were: 20 years of age or over, injury caused by
unintentional reasons, and an Injury Severity Score (ISS)
of 9 or greater. An ISS of 9 to 15 indicates that a patient has a moderate injury, while an ISS of 16 to 24 or
greater indicates a severe injury (Baker & O’Neill, 1976).
Participants were excluded if they were discharged from
hospital within 24 hr, were unable to provide informal
consents due to cognitive impairment, had severe brain
injuries or stroke, had burn injuries, or were victims of
hangings, poisonings, or any other injuries not caused by
force, and had hired a foreign worker after discharge. In
this study, the caregivers consisted of immediate family
members or other relatives of the injured patients. It is
fairly common practice among Taiwanese families to hire
a foreign worker from Southeast Asia to take care of a
sick family member, so a point was made of excluding
such foreign workers from this study. Selection criteria
consisted of caregivers 20 years of age or older, nonemployed caregivers such as foreign workers, and those who
cared for a patient who had been injured. As patients appear to have more psychological or cognitive problems
at 3 months after an injury (Lee et al., 2008), it was determined that this time point was appropriate to capture
illness representations for patients and their caregivers in
order to obtain more evidence for application in trauma
Data Collection
Data were collected from February 2012 to January
2013. Participants were screened through the injury
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Lee et al.
database of the hospital’s computer system. A senior
nurse screened outpatient department (OPD) appointments for potential participants. Caregivers were identified from the patients’ nursing records to select those
who were patients’ immediate family members or other
relatives. Participants who met the inclusion criterion
were invited to join the study during their OPD visits.
Clinical data of the injured patients were obtained from
medical records. Sociodemographic data and the items of
illness representations of patients and caregivers were
collected at OPD visits by the same nurse. Patient and
caregivers provided written informed consent before
completing the questionnaires. Data were collected either
before or after OPD consultations in a separate room to
avoid cross-contamination of responses. Ethical approval
was granted from the institutional research board of the
study hospital. No previous literature has reported on
the correlation between illness perceptions in injured patients and their caregivers. Thus, there is no ideal method
for calculating the necessary sample size. The data collection period was estimated as 6 months. The recruitment period was ultimately extended for an additional
6 months, however, after the sample size gathered during the initial 6 months of data collection was considered
Demographic data of patients and caregivers (Lee et al.,
2008, 2010), and clinical data of patients were selected
based on previous studies (Lee et al., 2010). The Chinese
Illness Perception Questionnaire Revised-Trauma (the
Chinese IPQ-R-Trauma), which is based on the CSMIR,
was used to assess the illness perceptions of injured patients and their caregivers. This instrument was derived
from the original Illness Perception Questionnaire Revised (IPQ-R), and it can be used to explain healthrelated behaviors in various patient groups (Moss-Morris
et al., 2002). The original scale was developed to provide a quantitative assessment of the five components
of illness representations in the CSMIR. The developers
of the IPQ-R recommend modification of certain items
can be adapted for a specific condition such as the injury group (Moss-Morris et al., 2002). A multiple-step
instrument translation and validation method was undertaken for the Chinese IPQ-R-Trauma. Forward translation and back-translation, content validity, exploratory
factor analysis (EFA), Cronbach’s alphas, and split-half
reliability were used for the scale. Items related to identity
and causes can be adapted for the injury group (Chaboyer
et al., 2012).
The Chinese IPQ-R-Trauma consists of 50 items that
are divided into eight subscales: (a) Ten items regarding
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Illness Perceptions in Patients and Caregivers
physical symptoms (score range 1–10, with higher scores
indicating more symptoms related to an injury). The experienced symptoms were indicated by ticking yes or no
to understand the identity of the injury; (b) Ten items to
measure the perceived causes of an injury (score range
5–50, with each item scored from 1 to 5 with one reason
such as “my emotional state” or “stress or worry”). Higher
scores on the subscale indicate higher levels of agreement
with the idea that the reasons listed had caused the injury. And finally, (c) six other subscales scored from 1 to
5 to measure the patient’s perceptions about the injury
(Chaboyer et al., 2012).
The other six subscales are as follows: the “emotional
representations” subscale (range 7–35), which refers to
the participant’s emotional reactions to an injury; the
“timeline-acute/chronic” subscale (range 6–30), which
represents how long the injury-related effects lasted and
whether the effects are acute or chronic; the “timeline
cyclical” subscale (range 4–20), which identifies whether
the effects of an injury are episodic or not; the “consequences” subscale (range 4–20), which refers to the
expected outcomes (i.e., in terms of work, lifestyle, and
finances) of the injury; the “control/cure” subscale (range
5–25), which refers to the participant’s beliefs about
the personal control or cure of an injury; and the “illness coherence” subscale (range 4–20), which refers to
how the participant comprehends an injury. The assessment of both positive and negative representations can
be conducted through these six subscales. High scores on
the “timeline-acute/chronic,” “timeline cyclical,” “consequences,” and “emotional representations” subscales
demonstrate that the participant has more negative perceptions toward to an injury. The four subscales are
scored from 1 best to 5 worst. In contrast, high scores
on the “control/cure” and “illness coherence” subscales
indicate that the participant perceives more positive feelings about an injury. The two subscales are scored from 1
worst to 5 best (Chaboyer et al., 2012).
The EFA demonstrated a factor structure that explained
60.3% of the total item variance in the scale (Chaboyer
et al., 2012), which was similar to the original western IPQ-R (Moss-Morris et al., 2002). The Cronbach’s alphas ranged from 0.69 to 0.80 for each subscale, and the
split-half reliability coefficients ranged from 0.7 to 0.82
(Chaboyer et al., 2012). For the current study, an itemlevel content validity index (I-CVI) for the instrument
was determined by five trauma experts (Polit & Beck,
2006). Just a few words were fixed after expert checking.
An average of 88% for all subscale items was scored by
the experts, indicating that the validity of the scale was
reguaranteed. Moreover, the Cronbach’s α of the scale
ranged from 0.69 to 0.79 for patients and from 0.71 to
0.75 for caregivers in this study.
Illness Perceptions in Patients and Caregivers
Lee et al.
Table 1. Demographic and Clinical Characteristics of Patients
Demographic data
Age (years, M ± SD)
Education level
0–12 years
>12 years
Marriage status
Clinical data
55.4 ± 12.5
Cause of injury
Vehicle accident
ISS (score, M ± SD)
Moderate (9–15)
Severe (ࣙ16)
ICU stay (days, M ± SD)
Length of hospital stay (days, M ± SD)
12.5 ± 7.0
3.1 ± 8.2
11.4 ± 10.5
Note. ICU = intensive care unit; ISS = Injury Severity Score.
Data Analysis
Data were analyzed using the Statistical Package for
the Social Sciences, version 18.0 (SPSS, Inc., Chicago, IL,
USA). The demographic and clinical characteristics of the
study subjects were presented as number and proportion
for categorical variables or as mean (M) and standard deviation (SD) for continuous variables. Due to the paired
nature of the data, patients’ and caregivers’ scores for
the Chinese IPQ-R-Trauma were compared using paired
sample t tests. The Chinese IPQ-R-Trauma scores among
different categories of patients and caregivers (i.e., those
with different characteristics) were compared by independent sample t tests (when there were only two levels for the given characteristic) or by one-way analysis
of variances (when there were three or more levels for
the given characteristic). The pairwise multiple comparisons (Scheffe’s post hoc test) among any two groups for
a given characteristic were performed when an F test indicated a significant difference between the two groups
overall. In order not to inflate the type I error (mass
significance), this study set the level of significance at
0.05/8 = 0.00625 because there were eight interrelated
subscales in the Chinese IPQ-R-Trauma.
Characteristics of the Participants
A total of 148 caregiver–patient dyads were screened,
and 127 pairs of injured patients and their caregivers
completed the survey. Twenty-one pairs of patients and
caregivers were excluded because they hired foreign
workers to care for the patients after hospital discharge.
The patients’ mean age was 55.4 (SD 12.5) years, more
were male (54.3%), most had been educated for 12 years
or less (82.7%), more were married (55.9%), more were
employed before their injury (56.7%), most were injured
by a vehicle accident (70.1%), most had a moderate injury (74.0%), and about one third (34%) had been to an
intensive care unit (ICU). The caregivers’ mean age was
46.6 (SD 11.1) years, more were female (63.8%), most
had been educated for 12 years or less (87.4%), most
were married (83.7%), most were employed (83.5%),
and most did not share care responsibilities with others (69.3%). The familial relationships of the caregivers
to the patients were mother (37.8%), spouse (29.1%),
son or daughter (17.3%), daughter-in-law (7.9%), father
(3.9%), and other relatives (4%; see Tables 1 and 2).
Illness Representations of Patients
and Caregivers
The mean subscale score for identity that reflects
the number of physical symptoms among the patients
was significantly greater than that for their caregivers
(p < .001). There were no significant differences in the scores for the remaining seven subscales between the patients and caregivers (Table 3). Both patients and the caregivers perceived an average of six to seven physical symptoms caused by the injury, but the mean subscale scores for causes among both patients and caregivers were low, indicating that both groups had weak perceptions about the reasons for the injury. Both the patients and caregivers presented very high subscale scores for three types of negative perceptions, including those covered by the “emotional representations” subscale, the “timeline acute/chronic” subscale, and the “consequences” subscale. The patients and caregivers also had Journal of Nursing Scholarship, 2016; 48:3, 254–264. C 2016 Sigma Theta Tau International Illness Perceptions in Patients and Caregivers Lee et al. Table 2. Demographic Characteristics of Caregivers Variables Age (years, M ± SD) Gender Male Female Education level 0–12 years >12 years
Marriage status
Share care responsibilities
Familial relationship of caregivers
Other relatives (e.g., siblings)
46.6 ± 11.1
moderate to high subscale scores with regard to the negative perceptions covered by the “timeline cyclical” subscale, suggesting that they believed the effects of the
injury were episodic. For the two positive illness perceptions, the findings indicated that patients and caregivers
had moderate to high perceptions on “controlling/curing”
and understanding of the injury.
Caregiver Illness Representations Based
on the Patient’s Data and Caregiver’s Data
Differences in caregiver illness perceptions based on patient demographics and clinical data were analyzed. First,
caregivers for severely injured patients perceived more
physical symptoms than did the caregivers for moderately injured patients. Second, caregivers whose family
had been admitted to an ICU perceived more physical
symptoms and believed, on average, that the post-trauma
condition of the given patient would require a longer recovery period than did those whose family had not been
admitted to an ICU. Lastly, caregivers for patients who
had been admitted to the hospital for 1 to 2 weeks tended
to have more positive views on the control or cure of the
injury than did those who cared for patients who were
admitted to the hospital for under 1 week or over 2 weeks
(Table 4).
Journal of Nursing Scholarship, 2016; 48:3, 254–264.

C 2016 Sigma Theta Tau International
The results indicated that a caregiver’s age and gender were not correlated in any significant way with any
of the subscales of the Chinese IPQ-R-trauma. Caregivers
who did not share caring responsibilities perceived more
physical symptoms, longer time to recover, more consequences, and better control or cure than did those who
had someone to share their care work (Table 5).
This study examined the differences between illness
perceptions of injured patients and their caregivers.
Patients and their caregivers held similar illness representations in the dimensions of “causes,” “emotional representation,” “timeline acute/chronic,” “consequences,”
“timeline cyclical,” “control/cure,” and “illness coherence.” However, the patients and their caregivers indicated significant differences in terms of their perceptions
of physical symptoms.
The average ISS of 12.5 ± 7.0 found in the study by Lee
et al. (2010) was similar to that found in the present study
(13.2 ± 4.2); however, patients perceived far more physical symptoms and more consequences, much stronger
negative emotions, that the recovery time would be much
longer, and that there were more episodic changes than
did the injured patients in the previous study. In this
study, 70% of the patients were injured by vehicle accidents, while 30% were injured by falls. However, over
95% of the injured patients in the study conducted
by Lee et al. (2010) were injured by vehicle accidents.
These differences among studies may reflect the possibility that the illness perceptions people produce depend to
a large degree on the nature of their different situations
(Leventhal et al., 2001, 2002), including being affected to
a high degree by the nature and severity of their injuries.
The caregivers in this study had many negative perceptions about the injury, including perceptions that there
were many physical symptoms, highly negative reactions,
many consequences, and chronic and episodic timelines
for recovery. These findings are consistent with a previous study that found that caregivers for injured patients
were pessimistic about recovery (Wu et al., 2014). Thus,
caregivers for injured patients may need additional support after hospital discharge to minimize the negative impact of caregiving.
Patients and caregivers held similar illness perceptions
toward the injury in this study. In Taiwan, family members are quite close and give support to the member who
is sick. This may be the reason for patients and caregivers
holding similar perception tendencies, and the findings
may be culture-bound in nature. These results are unlike those of previous studies, which found that patients
Illness Perceptions in Patients and Caregivers
Lee et al.
Table 3. Scores of Illness Representations of Patients and Caregivers
Number of items
Observed range
Patient mean (SD)
Caregiver mean (SD)
6.99 (1.55)
1.60 (0.40)
4.24 (0.53)
4.59 (0.56)
4.63 (0.55)
3.46 (0.56)
3.71 (0.72)
3.45 (0.70)
6.43 (1.90)
1.53 (0.41)
4.15 (0.48)
4.57 (0.52)
4.54 (0.48)
3.47 (0.54)
3.70 (0.58)
3.46 (0.69)

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