A study of the psychological distress in family caregivers of patients with prolonged disorders of consciousness during in-hospital rehabilitation

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DOI: 10.1177/0269215514521826
 2014 28: 717 originally published online 11 February 2014Clin Rehabil
Pasquale Moretta, Anna Estraneo, Lucia De Lucia, Viviana Cardinale, Vincenzo Loreto and Luigi Trojano
disorders of consciousness during in-hospital rehabilitation
A study of the psychological distress in family caregivers of patients with prolonged
 
 
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Clinical Rehabilitation
2014, Vol. 28(7) 717 –725
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DOI: 10.1177/0269215514521826
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CLINICAL
REHABILITATION
A study of the psychological 
distress in family caregivers of 
patients with prolonged disorders 
of consciousness during in-hospital 
rehabilitation
Pasquale Moretta1, Anna Estraneo1, Lucia De Lucia1, 
Viviana Cardinale1, Vincenzo Loreto1 and Luigi Trojano2
Abstract
Objectives: To study psychological distress in a sample of caregivers of patients affected by prolonged 
disorders of consciousness during hospital stay in the Neurorehabilitation Unit.
Materials and methods: Twenty-four caregivers of 22 patients affected by prolonged disorders of 
consciousness admitted to postacute rehabilitation center, completed self-reported questionnaires for 
assessment of depressive symptoms, state and trait anxiety, psychophysiological disturbances, prolonged 
grief disorder, psychological coping strategies, quality of perceived needs, perceived social support, and 
caregiver burden; at admission, and after four and eight months.
Results: At admission depressive symptoms were found in 20/24 caregivers, high levels of anxiety in 16, and 
relevant psychophysiological disturbances in 10 participants; eight caregivers (32%) met criteria for prolonged 
grief disorder. The scores on questionnaires did not differ as a function of relatives’ diagnosis (vegetative state vs. 
minimally conscious state). The longitudinal study (n = 18) showed a progressive and statistically significant increase 
of “emotional burden” during the hospital stay, whereas the remaining variables did not change significantly.
Conclusions: Data confirmed the presence of severe psychological problems in caregivers of patients 
with prolonged disorders of consciousness. The levels of psychological distress tend to be constant over 
time, while the emotional burden increases.
Keywords
Caregivers’ burden, disorders of consciousness, psychological distress
Received: 17 October 2013; accepted: 9 January 2014
1 Salvatore Maugeri Foundation, Scientific Institute of Telese 
Terme, Telese Terme, Italy
2 Neuropsychology Laboratory, Second University of Naples, 
Caserta, Italy
Corresponding author:
Luigi Trojano, Neuropsychology Laboratory, Department of 
Psychology, Second University of Naples, Viale Ellittico 31, 
Caserta 81100, Italy. 
Email: luigi.trojano@unina2.it
521826 CRE0010.1177/0269215514521826Clinical RehabilitationMoretta et al.
research-article2014
Article
Introduction
Disorders of consciousness encompass the 
Vegetative State/Unresponsive Wakefulness 
Syndrome, characterized by the presence of only 
reflexive responses to environmental stimuli,1 and 
the Minimally Conscious State, in which minimal, 
inconstant but reproducible signs of volitional 
behaviors are present.2 Disorders of consciousness 
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718 Clinical Rehabilitation 28(7)
are associated with extremely severe motor, cogni-
tive, and functional impairments,3 and require con-
tinuous and intensive assistance and care.4
As reported in chronic and degenerative dis-
eases,5–7 caregivers of patients with disorders of 
consciousness very often show severe psychologi-
cal distress and relevant psychological syn-
dromes.4,8 Moreover, it has been shown that high 
levels of psychological distress are associated with 
a little time dedicated to self.9,10 In a recent cross-
sectional study on a large sample of primary car-
egivers of patients with disorders of consciousness,11 
most participants (about 70%) showed high levels 
of depression and anxiety.
This dramatic condition of continuous exposure 
to stressful and not elaborated grief in several cases 
determines a relevant psychological syndrome 
known as prolonged grief disorder.12 The preva-
lence of prolonged grief disorder among relatives 
of patients with disorders of consciousness has 
been reported to range from about 15% to 
60%10,11,13,14 in cross-sectional studies assessing 
different phases and settings of the care process.
Most available studies on caregivers of patients 
with disorders of consciousness, report cross-sec-
tional data and, to our knowledge, just one study 
assessed long-term (five years) outcome of psy-
chological counseling in a small sample of caregiv-
ers,4 demonstrating that high levels of anxiety and 
depression tended to persist unchanged until the 
end of the study. In fact, the whole care process for 
disorders of consciousness patients entails differ-
ent challenges for the caregivers, from the acute 
phase characterized by worries about survival of 
their relative, to the chronic stage when the assis-
tance and care modify personal daily life and 
familiar structure deeply.6 Between these two 
phases, throughout the in-hospital rehabilitative 
process, the caregivers’ mind is often engaged in 
figuring out possible evolution of their relative’s 
clinical conditions and in fantasizing about com-
plete recovery of consciousness.
To our knowledge, only a few studies specifi-
cally addressed caregivers’ psychological prob-
lems during in-hospital rehabilitation of patients 
with disorders of consciousness.4,11,13,15 The pre-
sent eight-month longitudinal study was aimed to 
describe social impact and psychological symp-
toms in primary caregivers whose relatives are 
affected by prolonged disorders of consciousness, 
and to assess evolution of such disorders, during 
the in-hospital rehabilitative phase. No specific 
data are yet available on this issue, but on the 
basis of previous studies it is possible to hypoth-
esize that levels of psychological distress tend to 
remain high in family caregivers of patients with 
disorders of consciousness during in-hospital 
rehabilitation. The presence of professionals who 
are in charge for the care and rehabilitative treat-
ment, and even the active involvement of family 
caregivers in decisions about rehabilitative goals, 
might not suffice to relieve family caregivers’ 
distress.
Materials and methods
The present study has been conducted on family 
caregivers of patients with disorders of conscious-
ness admitted to the Neurorehabilitation Unit 
for severe acquired brain injury of the Salvatore 
Maugeri Foundation, Telese Terme, Italy. 
Following recommendationsof the Italian 
Ministry for Health, all family caregivers are 
included in an integrated informative and educa-
tive program aimed to promote their understand-
ing of the clinical situation and to actively involve 
them in the decisions about the rehabilitative 
goals.16 For the present study we examined data 
provided by family caregivers of patients with 
disorders of consciousness who underwent the 
rehabilitative training for at least eight months. 
For each patient we recruited the primary car-
egiver who was the relative most involved in daily 
care; for two young patients only, we recruited 
both parents who shared responsibilities and 
duties related to assistance and care of their sons. 
Data collected from caregivers whose relatives 
were transferred to other hospitals, or died, before 
the end-point of the study were not considered. 
Data collection was performed from January 2011 
to December 2012.
All participants gave their written informed 
consent to participate in the study, which was con-
ducted according to the Helsinki declaration.
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Moretta et al. 719
We used nine self-report questionnaires, assess-
ing different social and psychological variables. 
Beck Depression Inventory-II. A widely used 
checklist for depressive symptoms.17,18 It consists 
of 21 items, each evaluated on a 0–3 scale; the total 
score (range 0–63) identifies four categories of 
severity: no depressive symptoms (0–13); mild 
(14–19); moderate (20–28); or severe depressive 
symptoms (>29).
Prolonged Grief Disorder-12. A checklist inves-
tigating a subject’s reactions to the loss of a loved 
person as a consequence of death or severe ill-
ness.10,12 Items refer to clinical criteria for identifi-
cation of the prolonged grief disorder: presence of 
separation distress and of five or more cognitive, 
behavioral, or emotional symptoms at least for six 
months after the loss (or the onset of severe dis-
ease) of a loved person, with significant impair-
ment in social, occupational, or other important 
areas of functioning, in the absence of other clini-
cally relevant mental disorders.
State-Trait Anxiety Inventory-Form Y. A ques-
tionnaire including two separate scales to assess 
the tendency to react to stimuli with a high level of 
anxiety (trait anxiety scale), and the current level 
of tension and apprehension (state anxiety 
scale).19,20 It is composed of 40 items to be rated 
on a 1–4 scale (higher scores meaning higher levels 
of anxiety); both trait and state scales range 20–80 
(cut-off score for presence of relevant anxiety 
symptoms: 40).
Questionario PsicoFisiologico/Forma Ridotta 
(Psychophysiological Inventory-Reduced Form). A 
questionnaire including 30 items to assess psycho-
physiological symptoms in response to clinically rel-
evant conditions.21,22 Subjects are required to rate 
each item on a 1–4 scale (high scores meaning higher 
level of psychophysiological symptoms); total score 
ranges 30–120, and is converted in a percentile rank 
on the basis of Italian normative values.21
Coping Orientations to Problems Experiences. 
A 60-item questionnaire that assesses the different 
ways adopted by people to respond to stressors.23,24 
Items explore five groups of coping strategies: 
social support (score range 12–48); avoidance 
strategies (score range 16–64); positive attitude 
(score range 12–48); approach to the problem 
(score range 12–48); transcendent orientation 
(score range 8–32). Respondents are required to 
rate on a four-point scale (1 = I usually don’t do 
this at all; 4 = I usually do this a lot) what they usu-
ally do under stress; high scores for a coping strat-
egy indicate frequent use of that particular coping 
style.
Caregiver Need Assessment. A questionnaire 
specifically devised to assess quality of needs per-
ceived by caregivers of severely impaired 
patients.25 It includes 17 items, each evaluated on a 
0–3 scale, exploring information/communication 
needs (eight items; score range 0–24) and needs for 
social/emotional support (nine items; score range 
0–27). Total score ranges 0–51, with higher scores 
indicating stronger intensity of needs expression.
Medical Outcomes Studies Social Support 
Survey. A 21-item questionnaire aimed to describe 
perceived social support.26,27 The first item is an 
open question about the number of relatives and 
friends available in case of need; the next 19 items 
are based on a five-point scale exploring five differ-
ent dimensions of perceived social support (emo-
tional and informational support; affection; tangible 
support; positive interaction); the last item assesses 
willingness to accept help (yes/no response).
Family Strain Questionnaire. Assessing per-
ceived caregiving-related problems,28 by means of 
a semi-structured interview and a questionnaire. In 
this study we used only the questionnaire, that 
includes 35 dichotomous items investigating emo-
tional burden (14 items), problems of social 
involvement (seven items), need for knowledge 
(four items), quality of family relationships (four 
items), and thoughts of death (six items). In each 
domain, high scores indicate presence of problems, 
with the exception of family relationships where 
high scores mean good quality.
The present study included three assessments. 
In the first, at patients’ admission to the 
Neurorehabilitation Unit, the participating caregiv-
ers completed all the nine self-reported question-
naires in three 40-minute sessions, a few days 
apart. The second and third assessments were com-
pleted four and eight months after admission, 
respectively, during the patients’ hospital stay. At 
the second and third evaluations, the caregivers 
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720 Clinical Rehabilitation 28(7)
were administered all the questionnaires but that 
for trait anxiety; testing was performed in two 
40-minute sessions, few days apart.
We analyzed baseline data by comparing scores 
of questionnaires for assessment of clinical varia-
bles (anxiety, depression, psychophysiological 
symptoms) with normative values, to assess preva-
lence and clinical relevance of psychological syn-
dromes. Prevalence of prolonged grief disorder 
was assessed by the standard clinical criteria. 
Moreover, we ascertained whether caregivers’ 
scores were related to diagnosis of their relatives 
(Vegetative State vs. Minimally Conscious State), 
or to presence of prolonged grief disorder (pres-
ence vs. absence of the condition) by means of 
non-parametric Mann–Whitney U-test (with alpha 
<0.002, Bonferroni correction for multiple 
comparisons).
Correlations among questionnaires collected at 
study entry were assessed by means of non-para-
metric Spearman’s Rho coefficient (with alpha 
<0.002, Bonferroni correction for multiple compar-
isons). The same procedure was adopted to search 
for correlations between each questionnaire and 
caregivers’ age, patients’ age, and time from onset.
For the purpose of longitudinal evaluation, 
scores on questionnaires obtained at the baseline 
and at the four- and eight-month assessments were 
compared by means of Wilcoxon non-parametric 
test (with alpha <0.002, Bonferroni correction for 
multiple comparisons).
Results
At admission to the Neurorehabilitation Unit, 
repeated clinical evaluations performed according 
to current criteria1,2 evidenced a diagnosis of 
Minimally Conscious State in nine patients and of 
Vegetative State in 13 patients. In no patient did 
diagnosis change during the observation period.
Socio-demographic features of the caregivers 
selected for the study (n = 24) are reported in 
Table 1. Relatives of the selected caregivers (n = 22, 
11 females; mean age = 52.4 years, range 21–77) 
had suffered from traumatic (n = 5), anoxic (n = 9), 
or hemorrhagic (n = 8) brain injury at a mean of 9.8 
months (range 2–50) before admission(disease 
duration >12 months in 12 patients). Before admis-
sion to the Neurorehabilitation Unit, patients were 
cared for in intensive care units (n = 8), other reha-
bilitation units (n = 11), or long-term facilities 
(n = 3).
Mean scores on the questionnaires at the base-
line and at the following examinations are reported 
in Table 2. Presence of depressive symptoms (score 
>13 on Beck Depression Inventory-II) was detected 
in 20/24 caregivers (82.6% of the total sample; five 
had mild symptoms, 11 moderate, four severe), 
high level of anxiety in 16 caregivers (65.8%; five 
subjects scored above the 90 centile of the State-
Trait Anxiety Inventory normative data), and high 
scores on the Psychophysiological Inventory in 10 
participants (44%). Eight caregivers (32%) met cri-
teria for prolonged grief disorder.
The comparisons between participants with or 
without prolonged grief disorder showed signifi-
cantly younger age (Z = 3.467; p < 0.002), higher 
scores on Beck Depression Inventory-II (Z = 3.987; 
p < 0.002), and on the Psychophysiological 
Inventory (Z = 3.782; p < 0.002) in the prolonged 
grief disorder group.
The scores on questionnaires did not differ as a 
function of relatives’ diagnosis (Vegetative State 
vs. Minimally Conscious State).
Correlational analysis among scores on ques-
tionnaires showed: (1) a significant association of 
Beck Depression Inventory-II total score with the 
Psychophysiological Inventory (r = 0.614; p = 
0.002), and with the Family Strain Questionnaire 
subscale “emotional burden” (r = 0.680; p = 0.000); 
(2) a significant association of the State Anxiety 
Inventory score with the Caregiver Need 
Assessment total score (r = 0.643; p = 0.001) and 
with the subscale “need of social/emotional sup-
port” of the Caregiver Need Assessment (r = 0.640; 
p = 0.001); (3) a significant association of Coping 
Orientations to Problems Experiences subscale 
“Avoidance Strategy” with the Family Strain 
Questionnaire total score (r = 0.693; p < 0.001). All 
the other correlation coefficients did not reach 
Bonferroni adjusted significance level.
No questionnaire was significantly correlated 
with caregivers’ age, or patients’ age and time from 
onset (all p > 0.05).
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Moretta et al. 721
During the follow-up period, six participants 
dropped out from the study, two at the second eval-
uation and four at the third evaluation. In all these 
cases, the caregivers returned home or to job for 
logistic or economic problems, and resorted to a 
secondary caregiver. Most drop-outs were young 
people (one was a husband and four were daugh-
ters or sons), and all of them were relatives of 
patients in Vegetative State. The group of drop-out 
participants did not differ from the group of partici-
pants who completed the study on any variable 
assessed at the baseline (all p > 0.05).
Complete follow-up evaluation was therefore 
available for 18/24 participants (75%). Scores on 
Beck Depression Inventory-II, on State-Trait 
Anxiety Inventory, and on Psychophysiological 
Inventory (see Table 2) revealed the presence of 
depressive symptoms (score >13) in 15/18 car-
egivers (83.3% of the sample at the follow-up; 
two had mild symptoms, nine moderate, four 
severe), high level of anxiety in 12 caregivers 
(66.7%; five subjects scored above the 90 centile 
of the normative data), and high scores of psy-
chophysiological disorders in nine participants 
Table 1. Social-demographic characteristics of caregivers (n = 24); for each feature, the number of participants 
(and percentage on the total sample), or the mean±SD are reported as appropriate.
Feature Value
Age 47.39 ±14.86
Care hours 8.14 ±6.54
Gender Female 15 (62.5%)
Education Elementary 8 (33.3%)
 Junior high school 6 (25%)
 Senior high school 6 (25%)
 Master degree 4 (16.7%)
Work status Housewife 9 (37.7%)
 White-collar 3 (12.5%)
 Retired 2 (8.3%)
 Unemployed 2 (8.3%)
 Factory worker 3 (12.5%)
 Teacher 2 (8.3%)
 Other job 3 (12.5%)
Degree of relatedness Spouse 10 (41.6%)
 Parent 9 (37.6%)
 Son/daughter 5 (20.8 %)
Motivation to take care I do it better than others 9 (37.5%)
 There is no other 3 (12.5%)
 Others have no time 3 (12.5%)
 Other reasons 9 (37.5%)
Perceived economic condition Uncomfortable 4 (16.7%)
 Sufficient 9 (37.5%)
 Medium level 9 (37.5%)
 Comfortable 2 (8.3%)
Help from social services No 14 (58.3%)
 Yes, economic 4 (16.7%)
 Yes, material 6 (25%)
Abandon of working activities No 14 (58.3%)
 Yes, temporary 4 (16.7%)
 Yes, definitive 6 (25%)
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722 Clinical Rehabilitation 28(7)
(50%). Eight caregivers (44.4%) met criteria for 
prolonged grief disorder.
The statistical comparisons did not show sig-
nificant variations during hospital stay on any self-
report questionnaires (Table 2), but a progressive 
increase was observed on the “Emotional Burden” 
Family Strain Questionnaire subscale (admission 
vs. first follow-up, Z = 3.543, p < 0.002; admis-
sion vs. second follow-up, Z = 3.887, p < 0.002; 
first follow-up vs. second follow-up, Z = 2.978, 
p < 0.002). 
Discussion
The present study demonstrated high levels of psy-
chological distress in caregivers of patients with 
disorders of consciousness during in-hospital reha-
bilitation. The observed high rates of clinically rel-
evant anxiety, depression, and psychophysiological 
symptoms confirm that caregiving patients with 
disorders of consciousness are related to marked 
psychophysical distress, as shown by previous 
studies.11
In a remarkable percentage of caregivers (32%), 
the psychological disturbances met criteria for 
diagnosis of prolonged grief disorder at study 
entry. This percentage is similar to those reported 
in previous studies on caregivers of patients with 
disorders of consciousness in different settings,4,11 
but is drastically lower than that (60.4%) reported 
in a recent cross-sectional study on a sample of 43 
caregivers of hospitalized patients with disorders 
of consciousness.13 The discrepancies among stud-
ies have been ascribed to the participants’ age 
range (prolonged grief disorder is thought to be 
more frequent in younger caregivers),13 or to time 
postonset (as longer relatives’ disease duration 
would be associated to higher frequency of pro-
longed grief disorder in their caregivers).4 The pre-
sent study enrolled participants younger than those 
Table 2. Mean scores (and standard deviation) on the questionnaires administered at the three assessments.
Questionnaires Study entry (n = 24) 4 months (n = 22) 8 months (n = 18)
STAI-Y1 39.9 (4.2) — —
STAI-Y2 42.9 (4.7) 42.8 (4.7) 44 (6.9)
COPE-SS 27.3 (6.1) 27.7 (6.6) 27.5 (.6)
COPE-AS 23.1 (4.2) 21.8 (2.8) 23.5 (3)
COPE-PA 31.2 (6.7) 31.5 (7.7) 30.7 (2.5)
COPE-AP 30.4 (7.2) 29.4 (9.1) 27.7 (3.2)
COPE-TO 28.8 (4.4) 28.1 (4.1) 30.5 (1.2)
MOS-SSS 62.9 (20.2) 74.1 (15.8) 57.5 (14.5)
CNA-SES 16 (6.4) 17.2 (5.1) 16 (3.9)
CNA- IC 17.7 (3.7) 19.7 (4.3) 16.5 (4.1)
BDI-II 19.2 (7.7) 21.1 (15.3) 20.5 (21.9)
QPF/R 45.5 (10.9) 45.7 (12.3) 47.7 (13.9)
FSQ-EB 9.1 (4.1) 11.2 (3.6)* 11.2 (2.5)*
FSQ-SS 5.5 (3.4) 4.7 (1.4) 4.7 (.9)
FSQ-NK 2.7 (1.3) 3.1 (1.2) 3 (1.1)
FSQ-FR 2.8 (1.5) 3.1 (.8) 2.2 (1.7)
FSQ-TD 3.3 (1.4) 2.8 (1.3) 3.7 (.5)
STAI-Y1: Trait Anxiety Inventory-Form Y; STAI-Y2: State Anxiety Inventory-Form Y; COPE: Coping Orientations to Problems Ex-
periences, including the following subscales – COPE-SS: Social Support scale; COPE-AS: Avoidance Strategies; COPE-PA: Positive 
Attitude; COPE-AP: Approach to the Problem; COPE-TO: Transcendent Orientation; MOS-SSS: Medical Outcomes Studies Social 
Support Survey; CNA-IC: Caregiver Need Assessment, information/communication need; CNA-SES: Caregiver Need Assessment, 
social/emotional support; BDI-II: Beck Depression Inventory-II; QPF-R: Questionario PsicoFisiologico/Forma Ridotta (Psycho-
physiological Inventory-Reduced Form);FSQ: Family Strain Questionnaire, including the following subscales – FSQ-EB, Emotional 
Burden; FSQ-SS: Social Support; FSQ-NK: Need for Knowledge; FSQ-FR: Family Relationships; FSQ-TD: Thoughts of Death.
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Moretta et al. 723
enrolled in similar studies, but at a relatively early 
stage of their caregiving experience (about 10 
months postonset). It remains possible that the pre-
sent sample will show a higher rate of prolonged 
grief disorder in later phases of the care process, as 
reported in other studies.13
The clinically relevant psychological distress 
evidenced in the present sample of caregivers is 
associated with a strong impact on quality of life, 
determining a drastic reduction of interests and 
self-dedicated time. Our findings demonstrate that 
all the caregivers showed high levels of burden and 
reported needs for information and support, many 
of them had temporarily or definitively abandoned 
their previous activities.
All these features did not differ as a function of 
the diagnosis of caregivers’ relatives, consistent 
with a recent study.29 This observation would sug-
gest that, at least in the first year postonset, the 
presence of clinically evident responsiveness in 
their relatives does not substantially change car-
egivers’ psychological burden and reactions. 
Likely, the presence of the consistent ability to 
communicate needs and feelings in patients, i.e. the 
emergence from a minimally conscious state, may 
determine an evolution of psychological features in 
caregivers. In this respect, it seems very important 
to collect data about the possible evolution of car-
egivers’ psychological conditions as a function of 
recovery of consciousness, to better comprehend 
which kind of support is best suited to tackle the 
related psychological reactions.
In the present follow-up study we could not 
observe the possible psychological consequences 
of a change of clinical diagnosis in caregivers’ 
relatives, since we followed-up caregivers whose 
relatives’ clinical conditions remained stable during 
the hospital stay. As hypothesized, our findings 
demonstrated that this stable situation was not asso-
ciated with significant changes in the psychological 
state of caregivers who completed the follow-up 
period, notwithstanding the presence of profession-
als who are in charge for the care of patients. 
Although no coping strategy can be considered 
“pathological” when facing experience of “bereave-
ment” in emotional and cognitive terms, it is possi-
ble that coping strategies oriented towards 
acceptance of the current conditions can protect 
against development of prolonged grief disorder 
and psychological distress.11,13,15 Notwithstanding 
their relatives’ stable conditions and despite being 
in the protected hospital setting, caregivers who 
completed the follow-up period showed a signifi-
cant increase of their emotional burden. These 
apparently paradoxical findings are likely to be 
related to the fact that, as time elapsed without 
appreciable changes in their relatives’ clinical con-
ditions, caregivers’ expectancies, hopes, and fanta-
sies about a fast and complete functional recovery 
were disappointed. Moreover, it is also important to 
underline that at the time of the third examination 
most caregivers were involved in the process of the 
next discharge from hospital, and this likely poses 
new challenges and new uncertainties for them.
Involving the caregivers in clinical assessment 
of responsiveness, in the cognitive stimulation 
training, and in nursing care, can allow them to 
actively participate to the rehabilitative process, 
and to express their emotions and feelings being 
sustained by the therapeutic alliance with the mul-
tidisciplinary team. According to informal feed-
back received from the caregivers, the informative 
and educative program delivered to them is per-
ceived as useful, but its efficacy should be evalu-
ated by controlled intervention trials, also because 
it is plausible that such an informative program 
can even increase family caregivers’ emotional 
burden.
It is worth remembering that about 25% of par-
ticipants dropped out from the study, a quite high 
percentage. Although in most cases logistic rea-
sons seemed to account for drop-out (e.g. job-
related problems, very young children at home), it 
is also possible that a progressive loss of hopes in 
the possibility of good recovery played a role in the 
decision of hiring a secondary caregiver.
The contribution of the caregivers of patients 
affected by prolonged disorder of consciousness is 
of paramount importance, both in rehabilitative 
and assessment programs and in patients’ long-
term management. For this reason, while promot-
ing caregivers’ participation into the rehabilitation 
process, it seems important to support them with 
specific psychological interventions, tailored on 
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724 Clinical Rehabilitation 28(7)
individual needs, to face the emotional burden 
related to caregiving.
Our study provided novel information about 
distress in family caregivers’ of patients with pro-
longed disorders of consciousness in the rehabilita-
tive setting, but suffers from several limitations. 
First, since we enrolled only family caregivers of 
patients admitted to our long-term rehabilitative 
setting, our observation started quite late after the 
onset and referred to a small sample of patients in a 
prolonged state of unconsciousness. It remains to 
be explored whether the evolution of caregiver dis-
tress can change as a function of time from onset, 
but it is likely that all institutions providing long-
term rehabilitation to these patients will tackle 
similar problems and will face similar psychologi-
cal distress in caregivers. The small sample size, 
together with the rate of drop-outs, also reduced 
power of the statistical analysis, and our possibility 
to detect significant differences in the evolution of 
psychological distress (Type II error); nonetheless, 
our conservative approach allowed us to identify a 
long-term increase of emotional burden in the 
patients’ caregivers, which calls for specific psy-
chological support.
Clinical messages
• Severe psychological problems are present 
in caregivers of patients with prolonged 
disorders of consciousness during in-hos-
pital rehabilitation.
• The levels of psychological distress tend 
to be constant over time, while the emo-
tional burden increases during hospital 
stay.
Contributors
MP conceived, and with LT, designed the study. All 
authors performed analysis and interpretation of the data. 
MP, EA, and LT drafted and revised the manuscript for 
intellectual content. 
Acknowledgements
The authors are very grateful to Maria Guariglia, of the 
“Associazione Amici dei Cerebrolesi, Campania” and its 
president, Tullio Furlan, and to all patients’ caregivers 
who accepted to participate in the study.
Conflict of interest
The authors have no competing interest to declare.
Funding
The study has been entirely supported by the Salvatore 
Maugeri Foundation without external funding.
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