Soc Psychiatry Psychiatr Epidemiol (2012) 47:331–337 DOI 10.1007/s00127-010-0325-9
ORIGINAL PAPER
Factors associated with caregiver psychological distress in chronic schizophrenia Charalampos Mitsonis • Eleni Voussoura • Nikolaos Dimopoulos • Vassiliki Psarra • Evangelia Kararizou • Eleni Latzouraki • Iannis Zervas Maria-Nefeli Katsanou
•
Received: 25 April 2010 / Accepted: 30 November 2010 / Published online: 17 December 2010 Ó Springer-Verlag 2010
Abstract Background and aims Caregivers of patients with schizophrenia experience increased levels of psychological distress. This study investigated the impact of caring for patients with chronic schizophrenia on the mental health status of the caregivers and described the relationship between various socio-demographic and clinical characteristics and caregiving psychological distress. Methods The study was carried out at the Psychiatric Hospital of Athens. The Symptom Check List Revised (SCL-90-R) was administered to 87 caregivers of chronic schizophrenia patients and 90 healthy controls. The
C. Mitsonis Psychiatric Hospital of Athens ‘‘Dafni’’, 7, Metamorfoseos str., Halandri, 152 34 Athens, Greece E. Voussoura I. Zervas 1st Department of Psychiatry, Athens University Medical School, Eginition Hospital, 72, Vas. Sofias Ave, 115 28 Athens, Greece N. Dimopoulos (&) Psychiatric Hospital ‘‘Dromokaiteio’’, Ipsilandou 34, 151 22 Maroussi, Attiki, Greece e-mail:
[email protected] V. Psarra Psychiatric Hospital of Athens ‘‘Dafni’’, Ipsilandou 34, 151 22 Maroussi, Attiki, Greece E. Kararizou Department of Neurology, Athens University Medical School, Eginition Hospital, 72, Vas. Sofias Ave, 115 28 Athens, Greece E. Latzouraki M.-N. Katsanou Psychiatric Hospital of Athens ‘‘Dafni’’, 374, Athinon Ave, 124 62 Haidari, Greece
Positive and Negative Syndrome Scale (PANSS) was administered to schizophrenia patients in order to assess illness severity. Results The group of caregivers scored higher on the majority of symptom dimensions of the SCL-90-R than the control group. Clinical features of schizophrenia, i.e. duration of illness and PANSS positive and negative symptoms significantly predicted caregiving psychological distress. Caregivers’ and patients’ socio-demographic characteristics were not associated with caregivers’ distress, with the exception of caregivers’ sex: female caregivers experienced significantly higher levels of psychological distress than males. Conclusions The study suggests that clinical features of schizophrenia influence distress levels in caregivers of patients with chronic schizophrenia. The stronger predictors of distress appear to be female caregiver’s gender, duration of illness as well as positive and negative symptomatology. Keywords Caregivers Psychological distress Chronic schizophrenia SCL-90-R
Introduction The acknowledgement of caregivers’ vital role in the treatment of schizophrenia was a result of deinstitutionalization and the increasing shift from inpatient psychiatric care towards community-based mental health care services. It is estimated that between 40 and 90 per cent of people with mental disorders are in close contact or reside with informal caregivers [1, 2]. In Greece, the vast majority of patients suffering from schizophrenia and related disorders live with their families in the community (92–93%) [3]. Living with a schizophrenia patient
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can put considerable burden on primary caregivers as has also been observed in caregivers of patients with other mental disorders such as borderline personality disorder [4] and Alzheimer’s disease [5]. Caregivers are found to experience increased psychological distress due to financial, psychological, and social demands of chronically ill patients [6–8]. Psychological distress is conceptually defined as a ‘‘unique, discomforting, emotional state experienced by an individual, in response to a specific stressor or demand, that results in harm, either temporary, or permanent, to the person’’ [9]. Depression is more often reported by caregivers of patients with mental disorders. [1]. Moreover, caregivers that have a persistent high distress level are more likely to have a lower quality of life in comparison with the general population and face greater physical health risks [10, 11]. The following factors influencing caregivers’ psychological distress have been repeatedly reported: 1.
2.
3.
4.
Caregivers’ socio-demographic characteristics. It has been found that younger age, female sex, higher educational level, and part-time occupation result into higher levels of psychological distress [6, 12, 13]. Moreover, distressed caregivers have high expressed emotion (EE) [14]. Social support has been repeatedly linked to low levels of burden and distress [15–17]. Patients’ socio-demographic characteristics. Young age and male sex are linked to higher psychological distress [18–20]. Characteristics of the relationship. Kinship relation has been found to influence caregivers’ distress, so parents, and particularly mothers, experience greater distress [21]. Additionally, caregivers residing with the patient or spending a great amount of time with them report greater distress [2, 20, 22, 23]. Clinical features of the disorders. e.g. disruptive symptoms (e.g. passivity, psychotic, and aggressive symptoms), frequent psychiatric hospitalizations, short illness duration, and young patient age have been associated with increased level of distress in caregivers of persons with schizophrenia [16, 18, 23–26]. Regarding symptomatology, while some studies suggest that positive, e.g. delusions, hallucinations, poor insight, aggression are linked to greater psychological distress of caregivers [24, 26], other research findings support that negative symptoms, such as withdrawal, passiveness, and self-neglect [16, 27–30] cause greater caregiver distress. Other studies found that increased distress was associated with higher levels of both positive and negative symptoms [6, 20, 31], while data by Perlick et al. [32] demonstrated that caregivers’ distress is differentially related to positive and negative symptoms.
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The aims of this study were first to determine the psychological distress of primary caregivers of patients with chronic schizophrenia and second to investigate the relationship between socio-demographic and clinical illness characteristics with caregivers’ distress. Method Study participants Caregivers All caregivers of patients with chronic schizophrenia, who underwent a monthly follow-up at the outpatients’ clinic of the Psychiatric Hospital of Athens, were invited to participate in the study. Inclusion criteria for caregivers were (1) age above 18 years (2) no history of a mental disorder or psychotropic drug treatment (3) living together with the patient or having frequent contacts with him or her (at least three times a week), and (4) availability for assessment. From a total of 96 key caregivers of patients with chronic schizophrenia fulfilling the study criteria, 90 agreed to participate in the study and 87 (33 men and 54 women) completed all assessments (response rate = 91%). Healthy controls Ninety healthy, unrelated, individuals were recruited from among spouses, friends, and relatives of the hospital personnel (82% participation rate). Healthy controls were ageand sex-matched with the initial sample of 90 caregivers. Patients Patients were C18 years of age, who met criteria for schizophrenia according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition [DSM-IV]-TR [33]. Diagnosis of schizophrenia was required to have been made at least 2 years prior to entry, and continued antipsychotic treatment during this period was required in order to classify the diagnosis as chronic. The patient had to be clinically stable (no significant improvement or worsening) for a minimum period of 3 months before the study initiation. Baseline stability was assessed with the use of the Positive and Negative Syndrome Scale (PANSS). Significant improvement (or worsening) was defined as a reduction (or increase respectively) greater than 20%, in the PANSS total score or in the positive or negative symptom sub-scale PANSS scores. Patients were excluded if they had a psychiatric disorder other than schizophrenia; met criteria for substance dependence or mental retardation or experienced an acute relapse
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at the assessment time. Acute relapse was defined as an impending decompensation based on a PANSS score of C4 (moderately) on the subscore items of hostility and uncooperativeness and/or a C20% increase in the PANSS total score.
three subscales reflecting positive negative and general psychopathology symptoms [36]. Patient age, sex, frequency of psychiatric hospitalizations, and onset and duration of psychiatric illness were assessed by clinicians at study entry.
Measures and procedure
Statistical analysis
The study was conducted at the Psychiatric Hospital of Athens, the largest state psychiatric institution in Greece, between April 2006 and February 2007. It was in accordance with the protocol and ethical principles stated in the Declaration of Helsinki and approved by the Institutional Review Board. Following a complete description of the study, written informed consent was obtained from all participants.
Variables were first tested for normality with the Kolmogorov–Smirnov criterion. Normal variables were expressed as mean (standard deviation), while variables with skewed distribution as median (interquartile range). Caregivers and healthy controls were then compared in relation to their socio-demographic characteristics and their scores on the SCL-90-R subscales. Student’s t tests were used if the normality assumption was satisfied; the Mann–Whitney test was applied when the distribution was not normal. Finally, linear regression analysis was performed to single out which characteristics of the patients, caregivers, their relationship, and which clinical features of schizophrenia were most predictive of caregiving psychological distress, as measured by the Global Severity Index (GSI) of the SCL-90-R. Independent variables were caregivers’ characteristics (age, sex, and educational level), patients’ characteristics (age, sex), relationship characteristics (kinship, living status), and clinical features (illness duration, number of lifetime hospital admissions, PANSS positive and negative scores). The level of statistical significance was set at 0.05. Data handling and calculations were carried out using SPSS (version 17, SPSS Inc., Chicago, IL, USA).
Caregivers’ and healthy controls’ measures Psychological distress in schizophrenia caregivers was assessed by the Symptom Check List Revised (SCL-90-R). The SCL-90-R, developed by Derogatis, is a 90-item selfreport symptom inventory broadly used as a screening instrument for psychological distress and psychopathology [34]. Items are rated on a five-point Likert scale of distress, from 0 (not at all) to 4 (extremely) and the participant is asked to indicate how much the symptoms bothered him or her during the previous week [34]. In the present study, the Greek standardized version of the SCL-90-R by Donias et al. [35] was used. The combined answers on the checklist provide scores for nine primary symptom dimensions: Somatization (SOM), Obsessive–Compulsive (O–C), Interpersonal Sensitivity (I–S), Depression (DEP), Anxiety (ANX), Hostility (HOS), Phobic Anxiety (PHOB), Paranoid Ideation (PAR), Psychoticism (PSY), and three Global Indices: Global Severity Index (GSI), Positive Symptom Distress Index (PSDI), Positive Symptom Total (PST). For the purposes of this study, only global severity index was used from the global indices. For each caregiver a sociodemographic record was also compiled; this included: age, gender, educational level, kinship, and their living status (whether he or she resided with the patient). SCL-90-R was also administered to healthy controls. Patient measures Symptom severity was assessed with the Positive and Negative Syndrome Scale (PANSS), a 30-item rating instrument which refers to symptoms of the previous week. It yields a total average symptom score rated from 1 to 7 (higher scores indicating more severe symptoms) as well as
Results Socio-demographic characteristics and clinical features Patients’ and caregivers’ socio-demographic and clinical characteristics are presented in Table 1. In total, 66.7% of the patients were males, and their average age was 38.9 ± 10.2 years. Caregivers’ mean age was 55.6 ± 15.3 years, while there was no significant age difference between male and female participants [t(85) = 0.17, p [ 0.05]. The mean education was 9.15 ± 3.3 years, with no significant differences between male and female participants [t(85) = -0.47, p [ 0.05]. The sample comprised of parents, spouses, and siblings. Caregivers were primarily mothers (34.5%), followed by fathers and sisters (19.5% each), brothers (11.5%), wives (8%), and husbands (6.9%), while no significant differences between the groups were found (v2 = 0.44, p [ 0.05). The vast majority resided with the patient. The 90 healthy controls were 35 men and 55 women.
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Global Severity Index. Looking at each subscale separately, caregivers scored significantly higher than the healthy control group on the subscales of somatization, obsessive– compulsive, interpersonal sensitivity, depression, anxiety, and hostility.
Table 1 Socio-demographic characteristics of the participants Caregivers’ and patients’ characteristics
F
%
Male
33
37.9
Female
54
62.1
Caregivers’ sex
Caregivers’ age
a
Predictors of caregivers’ distress
51.6 (15.3)
Caregivers’ education (in years)a
9.15 (3.3)
Caregivers’ and patients characteristics, as well as clinical features of schizophrenia were entered into a linear regression model to predict psychological distress. Residuals plots for Global Severity Index and all independent numerical variables (e.g. illness duration, number of hospital admissions, PANSS negative and positive, caregivers’ age and education, and patients’ age) indicated no violation of the linearity assumption. The results of the regression analysis are presented in Table 3. A strong relation between predictors and scores in the GSI subscale of the SCL-90-R was found, and the model explained 55% (adjusted R2) of the variance in caregivers’ psychological distress, F (11,75) = 10.644, p \ 0.001. Significant predictors of caregivers overall psychological distress as measured by the Global Severity Index were caregivers’ sex, duration of the illness, and positive and negative symptoms.
Relationship with the patient Parent
47
54.0
Spouse/partner
13
14.9
Sibling
27
31.0
71 16
81.6 18.4
58
66.7
29
33.3
Living with the patient Together Apart Patients’ sex Male Female Patients’ agea
38.9 (10.2)
Illness durationa
9.0 (11.0)
Number of hospitalizationsb
3.0 (3.0)
Patients’ PANSS scoreb Patients’ PANSS positive score
54.0 (11.0) b
11.0 (3.0)
Patients’ PANSS negative scoreb
15.0 (16.0)
Patients’ PANSS GP scoreb
27.0 (9.0)
GP General psychopathology Mean (standard deviation)
a
b
Discussion
Median (interquartile range)
An examination of SCL-90-R scales revealed that caring for patients with chronic schizophrenia has an adverse effect on well-being. Scores on the SCL-90-R scale were significantly higher among caregivers of patients with schizophrenia than healthy controls, showing that primary caregivers experienced greater overall psychological distress. Specifically, they experienced higher levels of somatization, interpersonal sensitivity, depression, anxiety,
Caregiver’s psychological distress Scores in the SCL-90-R were not distributed normally. The participants’ median scores on the nine dimensions of the SCL-90-R, and the Global Severity Index, together with the median scores for the healthy controls, are presented in Table 2. Caregivers scored significantly higher on the Table 2 Median and interquartile range of the Symptom Check List subscales scores for caregivers of patients with chronic schizophrenia and healthy controls
* p \ 0.001
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SCL Dimension
Caregivers Median
Control group
U
Interquartile range
Median
Interquartile range
Somatization
9.00
9.00
3.00
3.00
Obsessive–compulsive
6.00
4.00
3.00
2.00
1706* 1939.5*
Interpersonal sensitivity
6.00
5.00
2.00
3.00
1520.5*
Depression
14.00
6.00
5.00
3.00
643.5*
Anxiety
14.00
5.00
6.00
3.50
621*
Hostility
5.00
5.00
3.00
2.00
1714*
Phobic anxiety
2.00
1.00
1.00
1.00
3761.5
Paranoid ideation
4.00
3.00
3.00
2.00
3296.5
Psychoticism
3.00
4.00
3.00
4.00
3508
Global severity index
0.70
0.21
0.34
0.14
319*
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Table 3 Caregivers’ and patients’ characteristics predicting caregivers’ psychological distress, as measured by the Symptom Checklist (SCL90-R) (n = 87) B Illness duration
SE B 0.015
0.003
b
t 0.629***
95% CI 4.516
0.009 to 0.022 -0.045 to 0.209
Hospitalizations
0.082
0.064
0.127
1.282
PANSS positive
0.020
0.006
0.283**
3.339
0.008 to 0.032
PANSS negative
0.012
0.005
0.280*
2.394
0.002 to 0.022
Patients’ age
-0.003
0.002
Patients’ gender
0.017
0.027
Caregivers’ sex Caregivers’ age
0.100 0.000
0.025 0.001
Caregivers’ education
0.048
-1.348
-0.007 to 0.001
0.621
-0.037 to 0.070
0.296 0.044
4.022 0.476
0.050 to 0.149 -0.001 to 0.002
-0.163***
-0.001
0.006
-0.026
-0.217
-0.013 to 0.011
Living status
0.012
0.037
0.028
0.320
-0.061 to 0.085
Kinship
0.013
0.015
0.073
0.863
-0.017 to 0.044
R2
F
0.552
F(10,75) = 10.644**
* p \ 0.05, ** p \ 0.005, *** p \ 0.001
hostility, and obsessive–compulsive symptoms. No significant differences were found in the level of psychoticism, paranoid ideation, and phobic symptoms between the groups. These findings are in agreement with a substantial body of literature that suggests that caregivers of schizophrenic patients are at risk of developing psychological and emotional problems [7]. Results show that clinical features of schizophrenia were significantly associated with caregivers’ distress outcome. Patients’ both negative and positive schizophrenic symptoms were found to be positively related to caregiving psychological distress. Previous findings on the effect of positive and negative symptoms are contradictory. Some studies have demonstrated a relationship between both positive and negative symptoms and caregiving distress [12, 20] while others have failed to show such association [18]. Others have shown that patients’ negative symptoms are experienced by caregivers as more distressing than positive ones, perhaps because positive symptoms tend to decrease in chronic schizophrenic patients and negative symptoms appear to be socially embarrassing and difficult to cope with [16, 29, 31]. In contrast, our findings suggest that both positive and negative symptoms have adverse effects on caregivers’ psychological well-being, even after controlling for other severity markers, i.e. number of psychiatric hospitalizations and duration of illness. In this study the duration of illness was positively associated with caregivers’ distress. However, findings from other studies suggest that short illness duration is more burdensome for family members [18]. It should be noted that according to McDonnel and colleagues’ work [18], illness duration did not remain significant after controlling for patients’ age. In contrast, our results showed a significant association between disease duration and caregiver’s distress even after controlling for age and severity
factors such as positive and negative symptoms. This may suggest that the psychological burden experienced by primary caregivers is partly explained by the cumulative effects of schizophrenia over the years that pose challenges to caregivers’ coping abilities. Interestingly, contrary to previous reports, patients’ number of hospital admissions was not related to caregivers’ overall psychological distress [17, 21]. This might be explained by the specificity of this sample; patients were chronic schizophrenics (at least 2 years of diagnosed schizophrenia prior to study entry) who had to be clinically stable for at least 3 months. It is possible that because of these inclusion criteria, the sample had a history of few relapses resulting in hospitalization, and this was also evidenced by the low average number of hospital admissions (median = 3). The study further explored the effects of numerous socio-demographic variables. Results indicate that only caregivers’ sex was positively associated with caregivers’ psychological distress. As shown in previous studies [21], female caregivers experienced significantly greater psychological distress than males. One possible explanation is that female caregivers have less positive coping with symptoms of their relatives than male caregivers. Alternatively, self-report measurement may exaggerate sex differences, as women tend to be more attentive to their feelings [37–39]. Contrary to our expectations, neither the type of family member (parent, sibling, or spouse) nor the living status (residing together or apart) was significantly related to caregivers’ distress. Although it has been suggested that caregivers who live with the patient perceive a greater burden and feel less satisfied with their lives than those who do not reside with the patient [20] it seems that this is not the case for caregivers of chronic schizophrenic patients [40]. These findings highlight the importance of
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including all caregivers when designing treatment programs for chronic schizophrenia caregivers. Furthermore, no relation between patients’ sex and caregivers’ psychological distress was reported, in line with previous reports [19]. There was also no relationship between caregiving distress and patients’ and caregiver’s age. This is in disagreement with other findings suggesting that older caregivers perceive less burdened, mainly because of a greater capability of fulfilling their caregiving roles and an additional improvement in patients’ symptoms [12, 21]. Taking into consideration the weaknesses of the Greek social welfare system, it is possible that the above benefits of older caregivers are compensated with feelings of worry, inadequacy, and uncertainty in the thought that they may no longer be able to fulfill their role as they age [10]. In conclusion, the study demonstrates that caregivers of chronic schizophrenic patients experience high levels of psychological distress. A number of clinical factors affect distress levels in caregivers of chronic schizophrenic patients. The stronger predictors of distress appear to be duration of schizophrenia and patients’ positive and negative symptomatology. Caregivers’ and patients’ socio-demographic characteristics were not associated with caregivers’ distress, with the exception of caregivers’ female gender. This finding may indicate that interventions should be adapted to address the specific psychological needs of female carers. Further, long-term clinical trials of preventive psychological interventions (e.g. coping skills training, cognitive behavioral stress management, family therapy) and/or pharmacological treatments to caregivers of patients with chronic schizophrenia are needed, in order to reduce the level of caregivers’ psychological distress.
Limitations The study has several limitations. First, the cross-sectional design of the study cannot identify the direction of causality. Second, the sample size was relatively small and restricted to an urban area. Furthermore, this study concentrated on socio-demographic and clinical variables. It is possible that caregivers’ distress stems from various other factors not measured in this study, such as the extent of caregivers’ social network, support, and coping strategies.
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