ORIGINAL ARTICLE
Year : 2019 | Volume
: 3 | Issue : 2 | Page : 116--123
Perception of burden by caregivers of patients with schizophrenia in relation to symptom profile
Bharathi Gunjahalli1, PM Chougule2,
1 Department of Psychiatry, HIMS, Hassan, Karnataka, India
2 Department of Psychiatry, Rajarshee Chatrapati Shahu Maharaj Government Medical College, Kolhapur, Maharashtra, India
Correspondence Address:
Dr. Bharathi Gunjahalli
W/o Dr. J. R. Dhananjaya, “Nirvikalpa,” Beside Kaveri (Unnati) School, Shantinagar, Hassan - 573 202, Karnataka
India
Abstract
Background: Schizophrenia begins early in life causing significant long-lasting impairments. The caregivers face physical, psychological, and economic difficulties in taking care of them. The current study was undertaken to study the influence of symptomatology, duration of illness, and treatment compliance of patients with schizophrenia on caregivers' burden. Methods: This study was hospital based, clinical, instrument rated, and cross sectional. Eighty-five patients and their caregivers who satisfied the selection criteria were interviewed. Information regarding sociodemographic details, patients' illness, present psychopathology, and relatives' burden were collected. Scale for Assessment of Negative Symptoms and Scale for Assessment of Positive Symptoms for (patients) and Burden Assessment Schedule for caregivers was used in the study. Descriptive and inferential statistical analysis was used. Results: The present study found that positive symptoms caused greater burden when compared to negative symptoms. Burden increased with increasing severity of negative symptoms. Although no significant influence of duration of illness and compliance to treatment was seen on caregivers' perception of burden, differential effect of the burden was observed for the above variables. Conclusions: Adequate treatment of symptoms benefits both patients and their caregivers. There is need for proper education of the patient and the caregivers about the need for continued treatment. The current study corroborates the importance of adequate treatment of positive symptoms as well as negative symptoms and the need to address caregiving by the family members for the well-being of both.
How to cite this article:
Gunjahalli B, Chougule P M. Perception of burden by caregivers of patients with schizophrenia in relation to symptom profile.Ann Indian Psychiatry 2019;3:116-123
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How to cite this URL:
Gunjahalli B, Chougule P M. Perception of burden by caregivers of patients with schizophrenia in relation to symptom profile. Ann Indian Psychiatry [serial online] 2019 [cited 2023 Mar 25 ];3:116-123
Available from: https://www.anip.co.in/text.asp?2019/3/2/116/262203 |
Full Text
Introduction
Schizophrenia is a clinical syndrome of variable but profoundly disruptive psychopathology which involves thought, perception, emotion, movement, and behavior. It is a leading public health problem that exacts enormous personal and economic costs worldwide. It affects <1%[1] of the world's population (approximately 0.85%), seen in all societies and geographical areas. Schizophrenia begins early in life causing significant long-lasting impairments. In India, over 90% of patients with schizophrenia live at home with their families,[2] creating extreme hardship for large number of families.[3] The caregivers face physical, psychological, and economic difficulties in taking care of such patients. Understanding their difficulties helps us to make any modifications in the treatment aspect of the patients. The consequence for a patient's relatives due to patient's illness has been studied for the past few decades.[4] This was formerly referred to as family caregiving burden. Family members often find themselves becoming a nurse/counselor/advocate/crisis worker/homecare and income provider.[5] Mills [6] was the first to study the concept of burden in terms of the effect of patients' illness on performance of various roles carried out by the relatives. Families face stigma, isolation, and lack of emotional support and recognition. The hidden burden associated with stigma and violations of human rights is difficult to quantify. Schizophrenia is believed to be stigmatized more than any other psychiatric illness.[7] Education about the illness and how to be effective caregiver was the second most pressing need of families.[8] Caregivers also face health decline. Seventy percent of caregivers feel their health has suffered because of their caring role.[9] This has its impact on care of individuals with schizophrenia.[10]
Various factors influence the perception of burden by family member of patient suffering from schizophrenia.[4],[11] In this study, we are focusing on the illness-related variables predicting the perception of burden. A number of variables pertaining to the nature of chronic illness affect the type and level of burden that will be experienced by family members.[12],[13] Apart from the demographic characteristics, illness characteristics are important predictors of burden.[14] Positive symptoms have been reported by some authors to cause greater burden on the caregiver.[4],[15],[16] Other authors [17],[18] found that negative symptoms caused greater caregiver burden. Frequent psychiatric hospitalizations and short illness duration have been linked to increased burden in caregivers.[8] Instruments devised by Indian authors to assess caregivers' burden are Burden scale by Pai and Kapur [19] and Burden Assessment Schedule (BAS) by Thara et al.[20] The above literature review shows the increasing interest regarding the family burden of schizophrenic patients. There is growing interest regarding planning for family involvement in the treatment programs. The purpose of the current study was to acquire greater insight into the illness-related variables that influence the family burden in this part of India (Maharashtra).
Methods
Patients were diagnosed with schizophrenia using International Classification of Diseases (ICD)-10[21] criteria who reported with family members attending the psychiatry outpatient department (OPD) at the district hospital attached to the Government Medical College. It was a clinical, instrument-rated, and cross-sectional study design. The patients included in the study were either newly diagnosed or those who were coming for follow-up and were symptomatic (defined under tools section) at the time of interview. Patients attending the OPD in a 6-month period who satisfied the selection criteria were included in the study. Ethical clearance was obtained from the Institutional Ethical Committee.
Selection criteria for patients
Inclusion criteria were (1) patients diagnosed schizophrenia using ICD-10, (2) symptomatic at the time of interview, and (3) patients reporting with relative. Exclusion criteria were (1) patient with concurrent medical illness; (2) patients brought by police; (3) patient from protection homes/orphanages; and (4) patients reporting alone.
Selection criteria for caregivers
Inclusion criteria were (1) age >18 years and (2) staying with patient for at least 1 year before the interview. Exclusion criteria was nonconsenting caregiver.
Collection of data
Eighty-five patients and caregivers satisfied the selection criteria and were included in the study. Data were collected by personal interview of the patient and the caregiver. Written informed consent was taken from the patient and caregiver whereever possible after explaining about the study in their local language. When the patient could not understand the nature of his/her illness and/or the study, only the caregiver's consent was taken. A pro forma specially designed for the purpose of the study was administered to the patient and the caregiver. Information regarding the demographic and illness details was obtained. For the purpose of the study, noncompliance to treatment was defined as patient not taking medication for duration of >2 months in the past 1 year period. Negative and positive symptoms were assessed using Scale for Assessment of Negative Symptoms (SANS)[22] and Scale for Assessment of Positive Symptoms (SAPS),[23] respectively. Caregivers' demographic details were obtained. BAS [20] was administered to the caregivers by personal interview.
Tools used in the study
Scale for Assessment of Negative Symptoms [22]
This assesses negative symptoms, consists of five scales to evaluate five different aspects of negative symptoms: alogia; affective blunting; avolition-apathy; anhedonia-asociality; and attentional impairment. Each of these symptoms can be assessed globally. It has a total of 25 ratable items which are scored between 0 (none) and 5 (severe). Hence, score ranges from 0 to 75.
Scale for Assessment of Positive Symptoms [23]
This assesses positive symptoms. It has 4 major positive symptom complexes: hallucinations, delusions, bizarre behavior, and formal thought disorder. Each of the symptoms are assessed globally. It has a total 34 ratable items, scored on a 6-point scale between 0 (no abnormality) and 5 (severe). The total score is from 0 to 170.
Patients were considered to be symptomatic at the time of interview by a minimum score of 25 on SANS and/or 34 on SAPS or on both the scales. Patients were also grouped according to the severity of the symptoms based on the SANS and SAPS score: (a) those with only negative symptoms: On SANS, the patient was rated to have marked or severe symptoms at least on two of the following major symptom complexes: affective flattening, alogia, avolition-apathy, anhedonia-asociality, and attentional impairment. On SAPS, none of the following was present to a marked or severe degree: hallucinations, delusions, formal thought disorder, and bizarre behavior. (b) Those with only positive symptoms: On SAPS, at least one of the following was present to a marked degree, i.e., the patient obtains score of 4 or 5 on any of the four major symptom complexes: hallucinations, delusions, formal thought disorder, and bizarre behavior and thus had global rating of marked or severe on any of these. On SANS, none of the following was present to a marked degree: affective flattening, alogia, avolition-apathy, asociality-anhedonia, and attentional impairment. (c) Those with mixed symptoms: when the score was marked or severe on both SANS and SAPS, then the patient was categorized as mixed symptoms.
Burden Assessment Schedule:[20]
This scale has 40 items rated on a 3-point scale, marked with 1–3, the responses would be “not at all, to some extent, very much,” respectively. Depending on the way the questions are framed, the marking for each of these responses are recorded. The scores fall from 40 to 120. Subscale I (spouse related): This factor has five items with score range from 5 to 15. Subscale II (physical and mental health): This factor has six items with score range from 6 to 18. Subscale III (external support): This factor has five items with score range from 5 to 15. Subscale IV (caregivers' routine): This factor has five items with score range from 5 to 15. Subscale V (support of patient): This factor has 4 items with score range from 4 to 12. Subscale VI (taking responsibility): This factor has 4 items with score range from 4 to 12. Subscale VII (other relations): This factor has 3 items with score from 3 to 9. Subscale VIII (patient's behavior): This factor has four items with score from 4 to 12. Subscale IX (caregivers' strategy): This factor has 4 items with score from 4 to 12.
Statistical analysis
Descriptive analysis was used. t-tests were used for comparing means between 2 groups (the t-test for unequal variances was used as the variances of the 2 groups were not homogeneous). One-way ANOVA was used for comparison of means of more than three groups; Chi-square tests were used for comparing proportions between categories. Pearson's correlation was used whenever an independent variable and dependent variable was correlated. P < 0.05 was considered as significant for all tests.
Results
A total of 85 patients and their key relatives took part in the study. Mean age of the patients was 35.2 ± 9.28 years ranging from 12 to 55 years. Majority (62, 72.94%) of the patients were in the age group 21–40 years. Males and females (43 males and 42 females) were equally represented. Eighty (94.12%) of the patients were Hindus. The rest of the patients were Muslims. Forty-six (54.12%) were from rural background. Forty-six (54.12%) stayed in nuclear family and 39 (45.88%) patients were from either joint or extended family. Average monthly income was 4178 INR, with majority (55, 64.71%) of patients having income <4000 INR. Majority (70, 82.36%) of the patients were educated. Mean duration of formal education was 9.53 ± 3.05 years. Majority (57, 67.06%) of the patients were unemployed. Among the patients who were employed, majority were agricultural laborers (16/28, 57.14%). Forty-five (52.94%) patients were married, 19 (22.35%) were unmarried, 17 (20%) were either separated from spouse or divorced, and 4 (4.71%) were widowed.
Illness characteristics of the patient
[Table 1] shows the frequency of occurrence or the scores and mean score as is relevant for age of onset of illness, symptoms, duration and course of illness, admission and compliance to medication in 1 year before the interview.{Table 1}
For the purpose of this study, patients were divided into three groups based on their SANS and SAPS scores as mentioned earlier.
Noncompliance to medication in 1 year before the interview
19 patients refused medications due to positive symptoms (delusions), 5 refused due to medication side effects, and 17 patients stopped taking medications due to either reduction of symptoms or becoming asymptomatic. Eighteen patients were noncompliant due to financial problems and one stopped taking medications after getting married.
BAS: the mean overall score was 81.49. Subscale I (spouse related): Mean score was 11.09 (N – 34 spouse included in the sample). Subscale II (physical and mental health): Mean score was 14.09. Subscale III (external support): Mean score was 9.67. Subscale IV (caregivers' routine): Mean score was 11.25. Subscale V (support of patient): Mean score was 8.75. Subscale VI (taking responsibility): Mean score was 9.2. Subscale VII (other relations): Mean score was 6.41. Subscale VIII (patient's behavior): Mean score was 8.72. Subscale IX (caregivers' strategy): Mean score was 8.96.
Burden assessment schedule score and subscale score in relation to symptomatology
The comparison of BAS scores between the groups based on the symptomatology is shown in [Table 2]. There was significant difference between the groups on relatives' perception of burden. The overall perception of burden was greater by relatives of patients who had positive and mixed symptoms. The caregivers of patients with positive symptoms also scored higher on Subscale II, III, VI, VII, and VIII than those with negative symptoms. The caregivers of patients with mixed symptoms scored higher on factors I, II, V, VI, VII, VIII, and IX than those with negative symptoms. There was no significant difference in those with positive and mixed symptoms on any of the burden subscales or total burden. [Table 3] shows significant positive correlation of the burden (total and all subscales except V) with positive symptoms. Negative symptoms did not correlate with any of the burden scores.{Table 2}{Table 3}
Burden assessment schedule score and subscale score in relation to severity of symptoms
[Table 3] also shows the comparison of burden (total and subscales) score with respect to the severity of the symptoms. Negative symptoms are divided into three groups based on the SANS scores into mild, moderate, and marked symptoms. Symptoms were considered mild if the SANS score was between 25 and 50, moderate if score was between 51 and 75, and marked if scores were between 76 and100. None of the patients in the study group scored >101 (i.e., severe symptoms). In the positive symptom group, all the patients had SAPS score amounting to mild symptoms, i.e., score from 36 to 68. Relatives of the positive symptoms group scored higher on the perceived burden (total and Subscales II, III, IV, VI, VII, VII, and IX) than the relatives of patients with mild negative symptoms. This difference was statistically significant. There was also significant difference between the mild and the moderate negative symptom groups with relatives of moderate symptoms perceiving greater overall burden and also on Subscales II and IV. However, no difference was observed between the moderate negative symptoms and the positive symptoms group. Marked negative symptoms group was not considered for statistical analysis as the sample size was small (n = 2).
Pearson's correlations
[Table 4] shows the Pearson's correlation of the various independent variable with burden (total and subscale scores) taken as the dependent variables. Significant positive correlation of the burden (total and all subscales except V) was seen with positive symptoms. Negative symptoms did not correlate with any of the burden scores. Illness duration correlated negatively with the Subscale I. No correlation was found with the number of admissions on any of the burden scores.{Table 4}
Burden assessment schedule score and subscale score in relation to duration of illness
[Table 5] shows the comparison of parameters between the patient groups with duration of more than or <1 year. There was no significant difference in the perception of burden by the caregivers. Both groups perceived high level of burden. There was significant difference in two groups on Subscale II, V, and VI with relatives of patients with duration of >1 year perceiving greater burden. Illness duration showed significant negative correlation with the Subscale I and not with any other subscales or total burden [Table 3].{Table 5}
Burden assessment schedule score and subscale score in relation to course of illness
[Table 6] shows the comparison of various parameters between the patients with different course of illness (according to ICD-10 classification). There was significant difference in the illness duration, number of admissions, SANS, and SAPS scores. There was significant difference in the groups with respect to total burden and on Subscale II, V, VII, and VIII. The burden was least in relatives with patients with incomplete remission and high in those with continuous course. This result should be analyzed cautiously, as the groups were unequal; there is possibility of Type I error.{Table 6}
Burden assessment schedule score and subscale score in relation to treatment compliance
[Table 7] shows the comparison of various parameters between the patients with respect to their compliance to treatment. There was significant difference between the three groups (not treated, noncompliant, and compliant) with respect to patients' age, illness duration, and SAPS score. Although relatives of patients who were untreated or noncompliant perceived greater burden, the difference was not significant. This result should be analyzed cautiously as the groups were unequal; there is a possibility of Type I error.{Table 7}
Discussion
The current study reinforces the finding that illness-related variables such as symptomatology, chronicity, and other aspects influence the burden experienced by caregivers.
In the current study, the patients were divided into three groups, i.e., with positive symptoms, with negative symptoms, and with both symptoms, based on their symptomatology (scored by SANS and SAPS). There was significant difference between negative group and that of positive and both symptoms group. Relatives of patients with positive and both symptoms were more burdened than those patients with negative symptoms. There was significant positive correlation between the positive symptoms versus total burden and all other factors except Subscale V. However, there was no significant correlation between negative symptoms and burden. The caregivers of patients with positive or both symptoms had greater effects on psychological and physical health. Caregivers of patients with positive or both symptoms were more responsible to look after patients' need. Patients' unpredictable behavior caused significant disturbance at home and outside. Caregivers relationship with other family members and friends was also significantly affected due to patients' symptoms. Caregivers of patients with mixed symptoms had more spouse-related problems, had lesser support from the patient, and had poorer strategies than those of caregivers of patients with negative symptoms alone. It has been observed that positive symptoms have been attributed to the burden.[4],[15],[16] Other authors [17],[18] have found that negative symptoms cause greater caregiver burden and cause greater impact on role functioning.
In the current study, analysis was attempted to see if there was any difference in the burden with respect to the severity of the symptoms. All the patients in the positive symptom group were mild, whereas in the negative group, mild, moderate, and marked symptom group was observed. Increasing burden was noticed with increasing severity of the negative symptoms, but the burden due to mild positive symptoms appeared to be greater than the marked negative symptom group. The difference was significant for those with mild as against moderate negative symptoms and mild positive group. However, the difference between moderate negative symptoms and mild positive symptoms was not statistically significant. Caregivers' burden of those with marked negative symptoms were greater than those of mild positive symptoms group. This finding shows the trend toward increased burden with increasing severity for negative symptoms; however the sample size is small to comment with certainty. This finding is consistent with other authors.[17],[18]
When the course of illness was considered, we found that there was significant difference in the illness duration, number of admissions, SANS, and SAPS scores. The caregivers of patients with episodic remittent group were the least burdened and those with continuous illness were burdened to maximum extent. There was significant difference in the groups with respect to total burden. Caregivers also had greater physical and mental health issues, had lesser support of patient, had disrupted relations and patients' behavior caused more distress.
In the current study, no significant difference was observed in the burden based on the duration of illness.[4] However, significant difference was noted in burden on Subscales II, V, and VI. Relatives of patients with >1 year had higher burden on the above-mentioned factors, i.e., this group had more psychological and physical problems, had less support from the patient due to the chronic illness, were forced to work due to the relatives illness, and were responsible to look after all the patient's need. This however contrasts other reports where short-duration schizophrenia (in which positive symptoms are more common) was found to cause greater burden on the caregiver. Majority of our patients had past history of admissions. There was no significant difference in the total burden between the relatives of patients with admissions or without any admissions in the past. Patients with more number of past admissions caused greater psychological and physical stress to the caregivers and had lesser support from the patient financially. It also caused disruption of the caregiver's relation with other relatives and friends. Frequent psychiatric hospitalizations have been linked to increased burden in caregivers of patients with schizophrenia by many other authors.[8]
In the current study, majority of the patients (60/85) were not compliant to medications and 9/85 were never treated. Main reasons for non-compliance to medications were described as follows: patient refused medication due to positive symptoms, reduction or remission in symptoms and side effects of drugs. Other reasons were financial problems and patient getting married. Although the caregivers of noncompliant patients perceived slightly higher burden than those of compliant patients, the difference was not statistically significant. However, this result cannot be generalized as the difference between the sample sizes was large. Noncompliance to treatment is a common problem in schizophrenia.[24] There are not many studies reporting the effects of compliance to treatment on the caregivers' burden.[5] This aspect of the study focuses on an important domain of managing and reducing the burden. Adequate patients' and caregivers' education regarding the illness, importance of treatment, managing the side effects, and supporting the families financially needs to be addressed in order to reduce the burden.
Limitations
The sample size was small and not representative of the total population of people in treatment or the total population with schizophrenia and was limited to a hospital. There was no comparison group to study if the burden was unique to schizophrenia or common to other psychiatric illness also. Despite the limitations, the current study corroborates the importance of caregiving for the general well-being of the family members.
Conclusions
Caregiving for patients with schizophrenia is an important public health issue. The finding of the current study suggests that patients' symptomatology was an important contributor to caregivers' burden. It has also been observed that increasing severity of symptoms also increased the burden. This indicates that an adequate treatment of symptoms does not only benefit the patient but also the caregivers of the patient. There is a need for proper education of the patient and the caregivers about the need for continued treatment. It also shows the need for actively incorporating the mental health programs in the early recognition, treatment, and improvement in inpatient facilities. In addition, assisted-living facilities may be helpful to ease caregivers' worries about long-term care for patients. In India, the unit of caregiving is likely to be the family. Therefore, involvement in the treatment process of other family members besides the primary caregivers is important.
Acknowledgment
I thank all the patients who consented for inclusion in the study.
Ethical statement
This study was approved by Institutional Ethics Committee with reference number RCSMGMCK/Pharm/Ethic Comm/65/09 obtained on 18th February 2009.
Declaration of Patient Consent
Patient consent statement was taken from each patient as per institutional ethics committee approval along with consent taken for participation in the study and publication of the scientific results / clinical information /image without revealing their identity, name or initials. The patient is aware that though confidentiality would be maintained anonymity cannot be guaranteed.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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