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Psychological health of caregivers and association with functional status of


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Article in Topics in Stroke Rehabilitation · March 2017


DOI: 10.1080/10749357.2017.1280901

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Topics in Stroke Rehabilitation

ISSN: 1074-9357 (Print) 1945-5119 (Online) Journal homepage: http://www.tandfonline.com/loi/ytsr20

Psychological health of caregivers and association


with functional status of stroke patients

Serda Em, Mehtap Bozkurt, Mehmet Caglayan, Figen Ceylan Cevik, Cemal
Kaya, Pelin Oktayoglu & Kemal Nas

To cite this article: Serda Em, Mehtap Bozkurt, Mehmet Caglayan, Figen Ceylan Cevik,
Cemal Kaya, Pelin Oktayoglu & Kemal Nas (2017): Psychological health of caregivers and
association with functional status of stroke patients, Topics in Stroke Rehabilitation, DOI:
10.1080/10749357.2017.1280901

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Published online: 20 Mar 2017.

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Topics in Stroke Rehabilitation, 2017
http://dx.doi.org/10.1080/10749357.2017.1280901

Psychological health of caregivers and association with functional status of stroke


patients
Serda Ema, Mehtap Bozkurta, Mehmet Caglayana, Figen Ceylan Cevikb, Cemal Kayac, Pelin Oktayoglua and Kemal Nasd
a
Faculty of Medicine, Department of Physical Medicine and Rehabilitation, Dicle University, Diyarbakir, Turkey; bDepartment of Physical Medicine
and Rehabilitation, Diyarbakır Training and Research Hospital, Diyarbakır, Turkey; cFaculty of Medicine, Department of Psychiatry, Dicle University,
Diyarbakir, Turkey; dFaculty of Medicine, Department of Physical Medicine and Rehabilitation, Sakarya University, Sakarya, Turkey

ABSTRACT ARTICLE HISTORY


Objective: Stroke does not only affect the physical state of patients but also the emotional state of their Received 9 November 2014
relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced Accepted 14 February 2015
with care for patients with stroke who are highly dependent on the assistance and also to establish the
KEYWORDS
relationship between the emotional state of caregivers and the severity of disability of the patients. Stroke; Caregiver; Disability;
Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical Depression; Anxiety
disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The
functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the
caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was
assessed by the SF36 Health Survey.
Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly
higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their
mental and physical health. Regression analysis also showed a significant negative correlation between
the BI scores and the HADS scores.
Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with
the severity of functional disability of the patients. Therefore, the support provided to the caregiver might
be influential on the functional recovery of the patients.

Introduction study reports that the impairment in the mood of caregivers


reduces the efficiency of the rehabilitation of patients.11 On the
Stroke is the third leading cause of death and the most com-
other hand, the same study presents that healthy caregivers who
mon disabling disease with a profound emotional impact on
are able to provide care would improve the post-stoke recovery
both patients and their family members.1 Stroke survivors
and rehabilitation process.11
receive invaluable support from their family members during
However, there are contradicted results obtained from exam-
their recovery, rehabilitation and community reintegration.2
ination of the relationship between the stroke survivor’s physical
Caregivers have also responsibilities to look after stroke patients
impairment and ability in self-care and the caregiver’s emotional
in their physical activities (help walking, carrying from bed to
health.12–14 Warleby Forsberg et al.12 employed Psychological
toilet), in their activities of daily living (bathing, dressing and
General Well-Being Index (PGWB) including six dimensions such
toileting) in their communication (verbal and nonverbal cues
as anxiety, depressed mood, positive well-being, self-control, gen-
to other family members), and in their emotional support (han-
eral health, and vitality found that the spouses of stroke patients
dling disruptive behaviour).3 Therefore, caregivers would basi-
had significantly lower psychological well-being compared with
cally experience stress and poor mental and physical health and
norm values except for the general health and they also found that
hence this can contribute to poor rehabilitation outcomes for
these parameters were significantly correlated with the functional
stroke survivors4 or threaten the sustainability of care at home.5
ability of the stroke patients. The study also indicated that Barthel
Many caregivers did not experience this role, which may have
index was significantly correlated with depressed mood. Anderson
a detrimental effect on both the patient and caregiver.6 This infor-
et al.13 have described the health and social consequences of car-
mal care often causes a great amount of time and energy, and
egiving for long-term survivors of stroke with residual handicap.
may lead to overwhelming feelings.7 Stroke has been shown to
They have suggested that dementia and behavioral abnormalities,
be significantly influential on the psychological well-being of the
rather than physical disability, are the characteristics of stroke
family members of the patient.8 Caregivers of stroke survivors
patients. Stein et al.14 reported depression in half of the spouse of
are inclined to have increased levels of depression in both acute
the patients, but they did not demonstrate a relationship between
and chronic phases of care.9 A qualitative study found 2.5 times
the level of physical disability and depression.
higher levels of distress in caregivers of stroke survivors.10 A

CONTACT Serda Em serdaem@hotmail.com; Kemal Nas kemalnas@sakarya.edu.tr


© 2017 Informa UK Limited, trading as Taylor & Francis Group
2  S. EM ET AL.

Previously, studies have reports on the emotional state of used for assessment of the caregivers and the healthy control
stroke caregivers but they do not cover patients with severe dis- subjects.
ability. Besides, they lack in assessing the relationship between
emotional state and the level of disability. Although Berg et al.15 The Barthel index
have studied the correlation between BI and Beck depression, This is used to measure the disability experienced by the patient
they did not evaluate the relationship between the emotional state in doing activities of daily living. BI consists of 10 items about
(an independent variable) and the level of disability (a dependent activities of daily living and mobility. BI assesses feeding, transfer
variable). Based on the current knowledge, we hypothesize that from wheelchair to bed and back, self-care, bathing, walking,
the emotional state is expected to be impaired in caregivers and climbing stairs, dressing and bladder and bowel continence.
they would be correlated with the level of disability in stroke Scoring is based on whether the patient needs help or not in doing
patients. This study aims to examine the emotional mood and any of the above-mentioned activities where scores between 21
quality life of caregivers of stroke patients with severe disability and 61 mean severely dependent; between 62 and 90 mean mod-
and also to investigate the association between the emotional erately dependent; between 91 and 99 mean mildly dependent;
state of caregivers and the severity of disability of the patients. and 100 means completely independent.16 The Turkish version
of this scale was verified in terms of its validity and reliability by
Materials and methods Küçükdeveci et al.17

Study group The Hospital Anxiety and Depression Scale


A total of 76 patients with cerebrovascular accident-related The HADS is a simple and reliable test that is used in medical
hemiplegia who were either admitted to our outpatient clinic practice. Its Turkish version has been shown to be valid and
or stayed in our in-patient rehabilitation clinic between March reliable.18 It consists of 14 questions, half of which makes up the
2012 and November 2013; 76 family caregivers and 94 health anxiety subscale while the other half constitutes the depression
control subjects were included in this cross sectional study. All subscale. Response options include “not at all,” “occasionally,”
the patients and their caregivers were paired and selected from “quite often,” and “very often,” which is scored from 0 to 3. Items
a pool of around 180 patients who were volunteers to take part of the depression and anxiety subscales are scored between 0
by considering exclusion criteria in this study. The patient group and 21 where 0–7 indicates normal, 8–10 indicates mild, 11–14
comprised patients who had one stroke at least 4 weeks and at indicates moderate, and 15–21 indicates severe mood disorders.19
most 2 years ago was severely physically dependent during their
activities of daily living. Patients with hemiplegia unrelated to The SF-36 health survey
cerebrovascular accident as well as patients with a history of This provides a general assessment of the respondent’s subjec-
more than one attack or those with insufficient cognitive func- tive views on different aspects of life. It consists of eight health
tions, speech disorders, or visual or emotional impairments and domains as follows: each with a score ranging between 0 and
patients not provided care by one single or a informal caregiver 100, with 100 being the best possible score: physical functioning
were excluded from the study. The caregiver group comprised (PF); role limitations because of physical problems (RP); bodily
family members who lived with the patient and were in close pain (BP); general health (GH); vitality (VT); social functioning
relation with the patient by providing care and supporting them. (SF); role limitations because of emotional problems (RE); and
Besides, caregivers with chronic diseases such as hypertension mental health (MH). The present study also analyzed two sum-
and diabetes as well as caregivers with a history of pathologic mary scores of SF-36, namely Physical Component Summary
diseases or those who received medical treatment in the last (PCS) and Mental Component Summary (MCS) scores.20 The
3 months were also excluded from the study. Control group was Turkish version of this scale was verified in terms of its validity
selected from patients applied to our clinics for minor complaints and reliability by Kocyigit et al.21
who had no chronic disease and no role to act as a caregiver and
were almost in the same age and gender group. Prior to actual Statistical analysis
conduction of this study, both oral and written information were
disclosed to the study group and the patients, caregivers and Measurement variables were expressed in mean Standard ± devi-
the control subjects provided informed consent, and also about ation, while categorical variables were presented in numbers and
potential benefits and inconvenience associated with study par- percentages (%). Kolmogorov–Smirnov test was used to decide
ticipation by the same two investigators. This study was approved if a sample comes from a population with a specific distribution
by the Ethics Committee of the Faculty, and it was conducted in while Levene test was used to assess the equality of variances
accordance with the Declaration of Helsinki and French Good for a variable calculated for two or more groups. Student t-test
Clinical Practices. was used to determine if two sets of data are significantly differ-
ent from each other, chi square statistic was used to investigate
whether distributions of categorical variables differ from one
Measurements another, Pearson correlation was employed in the evaluation of
Socio-demographic data such as age, gender, marital status, fam- the relationship between variables, multiple regression analy-
ily relationship, level of income, and residence were noted both sis was employed to understand how the typical value of the
for the patients and the caregivers. Barthel index (BI) was used dependent variable changes when any one of the independent
for assessment of the patients whereas the Hospital Anxiety and variables is varied, while the other independent variables are held
Depression Scale (HADS) and the Short Form-36 (SF-36) were fixed. All tests were carried out with 95% confidence, descriptive
TOPICS IN STROKE REHABILITATION  3

Table 1. Caregiver and control demographics. Power analysis


Caregiver n = 76 Control n = 94 p In this specific study, the sample size of patients and controls
Mean age ± SD (year) 33.34 ± 12.30 35.44 ± 8.10 0.18 were determined as at least 53 according to α = 0.05 and β = 0.05.
Gender n (%) 0.30
Male 28 (36.8) 42 (44.7) Mean HADS anxiety scores were determined in the patients and
Female 48 (63.2) 52 (55.3) controls (9.73 ± 4.88 6.82 ± 4.24, respectively). The power of
Marital status n (%) 0.67 statistical analysis for study population was 0.95 according to
Married 42 (55.2) 55 (58.5)
 Single 34 (44.8) 39 (41.5) the given effect size (population means of 9.73 vs. 6.82), SD (4.88
Education year n (%) p < 0.001 and 4.24), sample sizes (76 vs. 94), and alpha (0.050, two-tailed).
5≤ 38 (50) 22 (23.4)
5≥ 38 (50) 72 (76.6)
Income status n (%) 0.40 Results
 Higher income 26 (34.2) 38 (42.2)
 Lower income 50 (65.8) 52 (57.8) Analyses were conducted in 76 patients (mean age
Note: SD: Standard deviation. 59.31 ± 13.99 years)with hemiplegia, 76 caregivers (mean
age = 33.34 ± 12.30) and 94 healthy control subjects (mean
age = 35.44 ± 8.10). Demographic data of caregivers and controls
are demonstrated in Table 1. All the patients had a caregiver in
24; 32% the family. All the caregivers were the members of the family that
spouse
comprised predominantly the children of the patients. Fifty-one
(%67.1) of the caregivers were children of the patients, whereas
parent
24 (%31.6) were spouses and 1 (%1.3) was a parent (Figure 1).
children
Sixty (%65.8) of the caregivers were not working, whereas 16
1; 1%
51; 67% (%34.2) were workers. The demographic and clinical features
of the patients are demonstrated in Table 2. The mean disease
duration was 9.42 ± 6.80 (min: 3, max: 24 months). The patients
Figure 1. Kinship type between caregivers and patients. had severe disabilities with a mean BI score of 21.97 ± 15.55 (min:
0.0, max: 50). The life quality and emotional state of the car-
egivers and related data are demonstrated in Table 3. When cut
Table 2. Demographic and clinical characteristics of the patients. off value was set to 8, HADS depression and anxiety scores for
Characteristics caregivers were over cut off value in 68.2 and 61.4%, while these
Mean age ± SD (year) 59.31 ± 13.99 for controls were 34 and 40.4%, respectively. The caregivers had
Gender n (%) significantly higher levels of anxiety (9.73 ± 4.88) and depression
Male 46 (60.5)
Female 30 (39.5) (9.81 ± 5.05) than the control subjects (6.82 ± 4.24 for anxiety and
Marital status n (%) 6.00 ± 3.70 for depression) obtained from Student t-test. Total
Married 45 (59.2) scores and sub-scores of SF 36 health survey were significantly
 Single 31 (40.8)
Education year n (%) lower in the caregivers (p < 0.001). The scores and confidence
5≤ 62 (81.3) intervals of HADS and SF-36 for the caregivers and controls are
5≥ 14 (18.7) showed in Figure 2.
Disease duration (month) mean ± SD 9.42±6.80
Nature of lesion n (%) Correlations among the disability of patients, the emotional
 Ischemia 50 (65.8) state of caregivers and their life quality was analysed and the
 Haemorrhage 26 (34.2) results are demonstrated in Table 4. A negative correlation was
Side of lesion n (%)
 Right 46 (60.5) found between the anxiety and depression scores of the caregiv-
 Left 30 (39.5) ers and the BI scores (r = −0.622; p < 0.01 and r = −0.504 r;
Bowel control n (%) p < 0.05, respectively). The disability of the patients is represented
There is 64 (84.2)
Bladder control n (%) with BI scores. It was found that the BI scores are positively corre-
There is 60 (78.9) lated with MH sub-scores r = .420; p < 0.01) and total MCS scores
BI score mean ± SD 21.97 ± 15.55 (r = 0.420; p < 0.01). A significant negative correlation between
Note: BI: Barthel index; SD: Standard Deviation the depression and anxiety levels of the caregivers and BP, GH,
VT, SF, MH, and MCS scores was also found.
A significant negative association between the HADS anxiety
statistics and analyzes were performed with IBM SPSS version scores of caregivers and BI scores of the patients was found when
21.0 for Windows software package, p value of <0.05 was consid- HADS anxiety score was evaluated as an independent variable and
ered statistically significant. The sample size was selected using BI score as a dependent variable B = −1.404, t = 4.847 p < 0.001)
https://www.dssresearch.com/KnowledgeCenter/toolkitcalcu- (Table 5) while BI scores were not significantly associated with
lators/samplesizecalculators.aspx and power analysis was car- other independent variables such as HADS depression scores,
ried out using two-tailed test by https://www.dssresearch.com/ PCS, and MCS. The multiple regression analysis has produced a
KnowledgeCenter/toolkitcalculators/statisticalpowercalculators. coefficient of determination (R2) of 0.443 which may suggest that
aspx. HADS anxiety variable corresponds to 38% change in BI variable.
4  S. EM ET AL.

Table 3. The comparison of emotional state and life quality of caregivers and controls.

Caregiver Control p Mean difference 95% CI of the difference


SF 36 scores (mean ± SD)
SF36PF 55.28 ± 24.12 80.31 ± 18.12 <0.001 −25.02 −31.42 −18.63
SF36RF 24.34 ± 35.81 76.06 ± 32.36 <0.001 −51.72 −62.06 −41.38
SF36BP 37.55 ± 19.45 65.97 ± 25.36 <0.001 −28.42 −35.21 −21.63
SF36G 44.78 ± 21.84 58.95 ± 22.04 0.001 −14.16 −20.85 −7.48
SF36VT 40.39 ± 22.37 59.25 ± 20.76 <0.001 −18.86 −25.40 −12.31
SF36SF 42.26 ± 25.16 74.46 ± 17.95 <0.001 −32.19 −38.98 −25.41
SF36RE 29.38 ± 38.09 70.21 ± 40.45 <0.001 −40.82 −52.82 −28.82
SF36MH 47.31 ± 23.93 65.53 ± 21.71 <0.001 −18.22 −25.14 −11.29
SF36PCS 35.60 ± 9.44 47.45 ± 8.56 <0.001 −11.84 −14.57 −9.11
SF36MCS 34.57 ± 12.00 45.80 ± 10.45 <0.001 −11.23 −14.63 −7.83
HADS
Anxiety 9.73 ± 4.88 6.82 ± 4.24 <0.001 2.90705 1.52420 4.28991
Depression 9.81 ± 5.05 6.00 ± 3.70 <0.001 3.81579 2.44265 5.18893
Notes: PF: Physical Functioning; RP: role limitations because of physical problems; BP: bodily pain; GH: general health; VT: vitality; SF: social functioning; RE: role limitations
because of emotional problems; MH: mental health; PCS: Physical Component Summary; MCS: Mental Component Summary; HADS: Hospital Anxiety and Depression
Scale; CI: Confidence Interval p < 0.05 is statistically significant.

50

40

30
HAD Anxiety
HADS Depression
SF36MCS
SF36PCS

20

10

0
Caregiver Control
Groups

Figure 2. The emotional state and life quality scores of caregivers and controls.

Discussion Turkey was previously reported.24 Some studies in the literature


reported no difference in physiological distress in female and
The present study underlines the emotional state and general
male caregivers25,26 whereas some others reported higher rates of
health status of the caregivers of the stroke patients. Furthermore,
psychological distress in females.27,28 Our study is in agreement
the study examines the relation between recovery of the patients
with the first group of reports.
and emotional state of the caregivers.
As expected the current study showed a higher level of mood
Stroke is one of the most common causes of adult disability
of anxiety (68.2%) and depression (61.4%) in caregivers, which are
and handicap. A considerable percentage of stroke survivors’
quite high compared with those previously reported.13,29 It can be
trust to instrumental and emotional support from family car-
considered that the emotional state of the caregivers is related to
egivers after discharge.22 Majority of previous studies (64.1%)
the level of dependence of the patients on assistance. It is very hard
indicates that caregivers compromised largely females (70%) and
to rationalize the higher mood of anxiety and depression found
they are mostly related to patients as spouse (>70%).23 In the
in caregivers in this study compared to those in the literature.
current study, the higher ratio of caregivers was female (Table 1)
However, the social structure of Turkish soceity may be one of the
and they were the children of the patients (Figure 1). This may be
reasons for this difference.30 In fact, we have found a higher ratio
attributed to the difference in the social and cultural life styles in
of anxiety (40.4%) and depression (34%) in the control group.
the region. A similar distribution with regard to the caregivers in
TOPICS IN STROKE REHABILITATION  5

Table 4. The correlations (r) among the patient’s disability, caregiver’s emotional variable. The results showed that particularly, anxiety might be
state and caregiver's life quality.
used as an effective factor in the prediction of the level of disa-
BI HADS anxiety HADS depression bility of patients. Therefore, it may be suggested that any support
BI −.622** −.504** such as social and psychological leading to relieve anxiety mood
SF36PF .011 .023 −.205 of the caregivers will improve the recovery process of the func-
SF36RP −.099 −.089 −.137
SF36BP .290* −.287* −.395** tional disability of the patients.
SF36GH .207 −.395** −.423** Some studies reports that the life quality of caregivers is
SF36VT .247* −.382** −.407** affected by caregiving,38,43 while Morimoto T et al.44 and Clay
SF36SF .203 −.290* −.334**
SF36RE .167 −.061 −.249* et al.45 report that objectively measured stress affects the mental
SF36MH .468** −.418** −.480** health of caregivers rather than their physical health . The results
SF36PCS −.062 .002 −.129 in our study indicated that life quality in caregiver is affected in
SF36MCS .420** −.425** −.457**
terms of both mental and physical health. This difference might
Note: Pearson correlation test was for correlation analysis.
*
Correlation is significant at the 0.05 level; **Correlation is significant at the 0.01 be attributed to the severely advanced disability in the patients
level. since these patients, to perform their daily activities, will depend
on more physical efforts of caregivers and thus the caregivers are
expected to feel physically tired as a consequence of spent extra
Table 5. Multipl lineer regression analysis for the change in Barthel index. efforts for these patients.
Independent variables Coefficient (SE) B Std. error t p Apart from depression and other forms of psychological dis-
(Constant) 39.1540 8.077 4.847 0.0000 tress, limitations in social activities and other indicators of poor
HADSANK −1.4044 0.3770 −3.725 0.0004 life quality have been found in previous caregiving studies.43,46–49
HADSDEP −0.4650 0.3673 −1.266 0.2097 Some works also show that the functional disability of the patients
SF36PCS −0.2230 0.1538 −1.450 0.1515
SF36MCS 0.2603 0.1368 1.903 0.0611 and emotional distress of the caregiver have impacts on the life
Notes: F-ratio =14.1035; p < 0.001; Coefficient of determination, R2 = 0.4428, R2-ad- quality of caregivers,19,45,50 which concludes that the scores for the
justed = 0.4114, Multiple correlation coefficient = 0.6654. depression and anxiety of caregivers decrease and their life quality
improves as the BI scores increase at the end of one year.19 The
present study produces parallel results, indicating a significant
The significantly higher levels of anxiety and depression for relation between the level of anxiety and depression experienced
caregivers and the significantly lower SF-36 scores for physical by the caregiver and BP; GH, VT, SF, MH, and MCS scores.
and mental health of caregivers compared with those in controls The study was a cross-sectional investigation and therefore the
(Table 3) might indicate that emotional state of caregivers and emotional state and life quality of the caregivers were not deter-
their physical and mental health are influenced by the caregiv- mined before their role started. The effect of income and social
ing role. Similar studies have also issued higher rates of depres- status of the caregivers on their emotional state and life quality
sion8,31,32 or anxiety29,33,34 and higher rates of both depression has not well-established since they were all from a quite close
and anxiety35 in caregivers. social and economical background. There is a need to carry out
The present study observes a negative correlation between large and longitudinally designed studies for defining those issues.
the levels of depression and anxiety in the caregivers and the There is evidence indicating that the depression experienced
severity of functional disability of the patients. When evaluating by caregivers for stroke patients plays a role in the patient’s neg-
the factors influencing the functional state of the patients, it was ative response to the rehabilitation.8,51,52 But it is very hard to
found that the functional state was rather negatively related to establish whether the impaired emotional state of caregivers is
the anxiety level in the caregivers while it was not associated caused by the severity of disability of patients or the bad prog-
with depressive mood and quality of mental and physical health. nosis of patients is caused by the impaired emotional state of
Studies indicate an association between the emotional distress caregivers. However, we still suggest that the emotional state of
experienced by caregivers and disability of patient.22,29,36,37 Wilz caregivers should be recognized as a key factor in the rehabili-
et al.29 present that the symptoms of anxiety of spouses of car- tation process and therefore they should be provided with psy-
egivers are associated with disability perception of patients. JW chological support by periodical screening in order to improve
Hung et al.22 showed a correlation between the tension experi- their emotional state and life quality as well as to hinder the
enced by caregivers and the disability of patients indicated by bad prognosis of the disease. To our knowledge, stroke patient’s
the Barthel index. Jaraz et al.36 also demonstrated a higher emo- rehabilitation requires a team work, and caregiver is one of the
tional distress associated with lower patient’s functional status. key members of this team. The severity of disability of patients
Moreover, some other studies emphasized that caregivers possess seems to be closely related to emotional state and life quality of
a higher tendency to have depression as the severity in func- caregivers. Therefore, caregivers should be closely followed for
tional impairments of patients increases.12,31,38–40 Other reports emotional state. Caregivers with damaged emotional state should
display significantly higher rates of depression in the caregiv- be supported by psychological support.
ers for stroke survivors with no significant correlation between
the physical disability of patients and the emotional distress of
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