Asia-Pacific Journal of Public Health http://aph.sagepub.com/
Assessment of Internalized Stigma Among Patients With Mental Disorders in Thiruvananthapuram District, Kerala, India Tintu T. James and V. Raman Kutty Asia Pac J Public Health published online 13 August 2014 DOI: 10.1177/1010539514545645 The online version of this article can be found at: http://aph.sagepub.com/content/early/2014/08/12/1010539514545645
Published by: http://www.sagepublications.com
On behalf of:
Asia-Pacific Academic Consortium for Public Health
Additional services and information for Asia-Pacific Journal of Public Health can be found at: Email Alerts: http://aph.sagepub.com/cgi/alerts Subscriptions: http://aph.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav
>> OnlineFirst Version of Record - Aug 13, 2014 What is This?
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
545645 research-article2014
APHXXX10.1177/1010539514545645Asia-Pacific Journal of Public HealthTintu and Kutty
Original Article
Assessment of Internalized Stigma Among Patients With Mental Disorders in Thiruvananthapuram District, Kerala, India
Asia-Pacific Journal of Public Health 1–11 © 2014 APJPH Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1010539514545645 aph.sagepub.com
Tintu T. James, MBA, MPH1, and V. Raman Kutty, MD, MPH1
Abstract This study aims to compare the prevalence of high internalized stigma of mental illness among patients attending community-based and psychiatric hospital–based care in Thiruvananthapuram district, Kerala, India and to examine the factors associated with high internalized stigma. A cross-sectional survey was conducted among 290 patients, mean age 45 years, 38.2% and 61.8% female. A Malayalam version of the Internalized Stigma of Mental Illness inventory was used for assessing internalized stigma. A multistage random sampling method was adopted. The prevalence of high internalized stigma was higher among patients from community-based care (44.7%) as compared with those from psychiatric hospital–based care (34.1%). Apart from treatment in community-based care, age ≤45 years, unemployment, absence of long-term friendships, no hope of cure with medication, presence of other illnesses, and substance use were significantly associated with high internalized stigma. More than one third of the subjects had high internalized stigma. Keywords community-based care, internalized stigma, Internalized Stigma of Mental Illness (ISMI) inventory, mental disorders, stigma
Introduction Globally, 1 in 4 people are affected by mental disorders at some stage in their lives.1 According to the World Health Organization (WHO), almost two thirds of people with mental disorders, globally, fail to avail professional health care.1 Epidemiological studies from India suggest that nearly 20% of the adult population suffer from 1 or more psychiatric disorders, which means that almost 200 million people in the country require professional help.2 One of the major barriers for people with mental disorders with respect to seeking health care early is stigma.3 Stigma is
1Sree
Chitra Tirunal Institute for Medical Sciences and Technology, Thiruvananthapuram, India
Corresponding Author: Tintu T. James, Project Manager, Achutha Menon Centre for Health Sciences Studies, Sree Chitra Tirunal Institute for Medical Science and Technology, Medical College, Thiruvananthapuram 695100, Kerala, India. Email: [email protected]
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
2
Asia-Pacific Journal of Public Health
unique in the way that it is influenced by all other barriers to seek health care, including lack of awareness, cultural issues, supernatural beliefs, and religious beliefs.4 According to Goffman,5 “stigma is a process by which the reaction of others spoils normal identity.” Stigma of mental illness manifests as public stigma and personal stigma. Public stigma is the reaction that people hold toward those with mental disorders. Personal stigma includes perceived stigma (individual’s thinking on society’s perception about the stigmatized group), experienced stigma (individual faces discrimination from the society), and internalized stigma (internalization of public stigma). Reactions to stigma by people with mental disorders vary from becoming energized or empowered to internalizing more stigma.6 Most of our understanding on internalized stigma originates from developed nations, which may not be applied to other settings because of the difference in the nature, source, and impact of stigma across cultures and regions.7 In India, studies have mostly focused on assessing stigma associated with mental disorders among family members, caretakers, or the general population.8 Appropriate attention has not been paid to stigma among patients with mental disorders. Kerala is one state that is more advanced in the epidemiological transition compared with other states in India. It is also distinguished by the high frequency of social ills. Per capita consumption of alcohol is highest in Kerala as compared with other Indian states. In 2009, Kerala recorded the fourth highest suicide rate in India (25.2 per 100 000 population), 2.5 times the national average. Divorce rate, prevalence of depression, demographic ageing, and family and marriage breakdown are high in Kerala.3 There are no studies on internalized stigma among patients with mental disorders in Kerala.9 In the present study, we compared the prevalence of high internalized stigma among patients with mental disorders attending community-based and psychiatric hospital–based care in Thiruvananthapuram district, Kerala. We also aimed to assess the factors associated with high internalized stigma among patients with mental disorders.
Methods Study Design and Setting A facility-based cross-sectional survey was conducted among 290 patients with mental disorders attending follow-up outpatient clinics of 13 randomly selected primary care centres (called “community-based care” in the present article) and a tertiary government psychiatric hospital (called “psychiatric hospital–based care” in the present article) in Thiruvananthapuram district, Kerala.
Sample Size The sample size was calculated using Epicalc package of R software version 3.0.2.10 Considering an expected prevalence of internalized stigma as 45% in hospital-based care and 25% in community-based care,7,8,11 the sample size was calculated to be 128, given a power of 90% and a significance level of 5%. Total sample size was calculated by multiplying this by 2, as the outpatient load were similar in both community- and hospital-based care settings.12 Considering a nonresponse rate of 20%, the sample size was calculated to be 310.
Sample Selection Procedure A multistage random sampling method was adopted to select participants from the primary care centers. First, we randomly selected 13 primary care centers from a total of 22 primary care
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
3
Tintu and Kutty
centers where the district mental health program has integrated mental health into primary care. The selected primary care centers include district hospitals (n = 1), taluk hospitals (n = 1, taluk is an administrative unit below the district level), regional health centers (n = 1), community health centers (n = 5), and primary health centers (n = 5). Second, we randomly selected a minimum of 10 participants from the daily outpatient list of each of the selected primary care centers. A systematic random sampling technique was used to select participants from the Mental Health Centre (MHC). The number of outpatients per day in the MHC was between 150 and 170. On the day of data collection, every fifth patient in the registration list was approached and those who satisfied the inclusion criteria were selected. Patients aged 18 years and older with a clinical diagnosis of mental disorders (using the International Classification of Diseases–10th revision) for more than 6 months were included in the study. Mentally retarded, deaf and dumb, or participants having incoherent speech were excluded from the study.
Data Collection The interviews were conducted by a single interviewer (the first author of this article) using a questionnaire that consisted of the Internalized Stigma of Mental Illness (ISMI) inventory and questions on sociodemographic characteristics, psychosocial factors, and illness-related factors.13 The ISMI was selected to assess internalized stigma because it has been tested in different cultural settings and found to be valid and reliable. It can be applied to patients with various mental disorders, and there are no item in the scale referring to past episodes of discrimination.14 The ISMI assesses 5 dimensions of internalized stigma (alienation, stereotype endorsement, discrimination experience, social withdrawal, stigma resistance) by means of 29 items. No version of the ISMI was available for speakers of Malayalam, which is the primary language spoken in Kerala, India. The instrument was therefore translated from English to Malayalam using forward and backward translation with the backward translation being reviewed by Jennifer Boyd Ritsher, the developer of the original ISMI. The Malayalam version showed satisfactory reliability and construct validity as assessed by confirmatory factor analysis. In addition, the translated instrument was given to the experts in the field of epidemiology (n = 1), stigma research (n = 2), psychiatry (n = 2), and clinical psychology (n = 2) who confirmed the face and content validity of the instrument for the population of Kerala. The details of the validation study will be published elsewhere and are available on request. As a measure for internalized stigma, a total mean score consisting of the ISMI alienation, stereotype endorsement, discrimination experience and social withdrawal subscale was calculated ranging from 1 to 4. It was categorized into 2 groups as proposed by Ritsher et al.13 Participants with a total score between 1.00 and 2.50 were classified as having low internalized stigma, participants with a total score between 2.51 and 4.00 were classified as having high internalized stigma. In line with other studies in the field, the stigma resistance scale was not considered in the calculation of the total score because of a low internal consistency. Apart from internalized stigma, the interview inventory also collected information on sociodemographic characteristics, psychosocial factors, and illness-related factors. Questions were asked to capture social support, hope in cure, family support, and severity of illness.
Statistical Analysis Data entry was done using Epidata version 1.3.2.1. The data were then imported to R version 3.0.2 for analysis.15 Pearson’s χ2 tests and independent t test were used for purposes of data description. Difference in prevalence was calculated to compare the prevalence of internalized
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
4
Asia-Pacific Journal of Public Health
stigma between the community-based care and the hospital-based care. We used bivariate logistic regression followed by stepwise multivariate logistic regression to identify the significant factors independently associated with high internalized stigma. The model was built in the following stepwise manner: Step 1: Treatment facility (distal variable) was included in the model. Step 2: Treatment facility was retained. Age, sex, and residence along with other sociodemographic characteristics (intermediate variables) with P ≤ .1 in bivariate analysis were included in the model. Step 3: Keeping those variables with P ≤ .1 from the previous step, the psychosocial factors (intermediate variables) with P ≤ .1 were added to the model. Step 4: Variables with P ≤ .1 from step 3 were added along with the illness-related factors (proximal variables) with P ≤ .1. Step 5: The final model was derived by the “backward likelihood ratio” method; variables with P < .05 were retained at this stage. The study was approved by the District Medical Officer, Thiruvananthapuram; by the Institutional Ethical Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology; and by the Ethics Committee of District Mental Health Programme and Institutional Ethical Committee of Mental Health Center, Thiruvananthapuram.
Results Sample Characteristics Table 1 presents the sample characteristics. The majority of the participants were from rural areas (92.1%). Participants from psychiatric hospital–based care were more educated, less likely to be employed, single, suffering from bipolar affective disorders, and had more relapses than those from community-based care. The majority of participants in the overall sample were living in a joint family (86.6%). A large proportion of participants (91.4%) in the overall sample accepted that they are suffering from mental disorders. A high proportion of participants in the overall sample (85.5%) had the hope that their illness will be cured with medication. Alcohol use was less prevalent (5.9%) than tobacco use (23.4%) in the overall sample; in further analysis, both alcohol and tobacco use were combined under “substance use.” Slightly more than three fourths (76.9%) of overall participants were free from any other illnesses such as diabetes, hypertension, or hypercholesteremia. The overall sample median age at onset of illness was 27.0 ± 10.6 (SD) years.
Validity and Reliability of the Malayalam Version of ISMI The items of the scale were found to be adequate and appropriate for use by each expert who evaluated the scale. Cronbach’s α of the scale among study sample (n = 290) was .93 and split half reliability of the scale in the study sample (n = 290) was .82. Figure 1 shows the responses to ISMI items.
Prevalence of High Internalized Stigma The total score was calculated by adding the scores of all 22 items and dividing by 22. The total score ranges from 1.00 to 4.00. The total score was categorized into 2 groups using the method adopted by Ritsher et al13
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
5
Tintu and Kutty Table 1. Sociodemographic, Psychosocial, and Illness-Related Characteristics of the Sample. Variables Agea in years, mean ± SD Sexb Male Female Place of residence Urban Rural Educationb High school or above Below high school Occupationb Employed Unemployed Marital statusb Single Currently married Widowed Divorced/separated Family type Nuclear Joint Diagnosis (from medical records)b Schizophrenia Bipolar affective disorders Othersc Acceptance of having mental illness Yes No Substance useb,d Yes No Hope of cure with medication Yes No Other illnesse (self-reported) Diabetes Hypertension Hypercholesterolemia None Age at onset of illness (years)f ≤25 >25 No. of relapses after starting treatmentb ≤4 >4
Community-Based Care (N = 152), n (%)
Psychiatric Hospital–Based Care (N = 138), n (%)
47.2 ± 11.7
42.4 ± 10.5
58 (38.2) 94 (61.8)
85 (61.6) 53 (38.4)
8 (5.3) 144 (94.7)
15 (10.9) 123 (89.1)
76 (50.0) 76 (50.0)
94 (68.1) 44 (31.9)
67 (44.1) 85 (55.9)
81 (58.7) 57 (41.3)
31 (20.4) 83 (54.6) 17 (11.2) 21 (13.8)
50 (36.2) 60 (43.5) 10 (7.3) 18 (13.0)
24 (15.8) 128 (84.2)
15 (10.9) 123 (89.1)
45 (29.6) 44 (28.9) 63 (41.5)
34 (24.6) 67 (48.6) 37 (26.8)
138 (90.8) 14 (9.2)
127 (92.0) 11 (8.0)
29 (19.1) 123 (80.9)
41 (29.7) 97 (70.3)
132 (86.8) 20 (13.2)
116 (84.1) 22 (15.9)
25 (16.4) 22 (14.3) 6 (3.9) 115 (75.7)
22 (15.9) 15 (10.9) 8 (5.8) 108 (78.3)
60 (39.5) 92 (60.5)
70 (50.7) 68 (49.3)
91 (59.9) 61 (40.1)
54 (39.1) 84 (60.9)
Test, P < .05. test, P < .05. cDepressive disorders, psychosis, alcohol-dependent syndrome, epilepsy, dementia, and anxiety disorders. dTobacco use (smoking or smokeless tobacco) or alcohol use in past 30 days. ePercentages do not add to 100% because of the coexistence of more than 1 illness. fMedian as cutoff. at
bChi-square
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
6
Asia-Pacific Journal of Public Health
Alieniaon
Stereotype Discriminao Social Endorsement n Experience Withdrawal
Protect family Isolated Reduced socializaon People disinterested Patronized
Proporon of parcipants agree Proporon of parcipants strongly agree
Contribuons Known by looks Violent Others can't understand Feel inferior Out of place 0
10
20
30
40
50
60
70
Figure 1. Proportion of participants who agreed or strongly agreed to the Internalized Stigma of Mental Illness Inventory (ISMI) items.
Low internalized stigma: Participants with a total score between 1.00 and 2.50 were classified as having low internalized stigma. High internalized stigma: Participants with a total score between 2.51 and 4.00 were classified as having high internalized stigma. The prevalence of high internalized stigma was higher among participants from communitybased care (44.7%) as compared with those from psychiatric hospital–based care (34.1%). The 95% confidence interval (CI) for the difference in proportion between the 2 groups was from −0.005 to 0.218. But internalized stigma was found to be significantly higher among participants from community-based care in comparison with hospital-based care, when adjusted for sociodemographic, psychosocial, and illness-related factors (95% CI = 1.01-3.13).
Factors Associated With Internalized Stigma Tables 2 and 3 show the bivariate analysis for the factors associated with high internalized stigma. Participants who were having any symptoms of mental disorders in the past year had a 2.1 times higher chance (OR = 2.11) of experiencing high internalized stigma as compared with those with no symptoms in the past year. Results of the multivariate analysis are shown in Table 4. Treatment in community-based care, age ≤45 years, unemployment, absence of long-term friendship, no hope of cure with medication, presence of other illness, and substance use were independently associated with high internalized stigma (Table 4).
Discussion For people with mental disorders, internalized stigma is a significant barrier with respect to seeking health care. Little is known about internalized stigma of mental illness in India. To the best of our knowledge, the present study is the first to examine the prevalence and correlates of high internalized stigma of mental illness in community- and hospital-based care settings in a region of India.
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
7
Tintu and Kutty Table 2. Association of High Internalized Stigma With Sociodemographic Characteristics and Psychosocial Factors. Variables
n
Ageb (years) >45 136 ≤45 154 Sex Male 143 Female 147 Education High school or above 170 Below high school 120 Acceptance of having mental illness No 25 Yes 265 Living status Living alone 19 Living with family 271 Long-term friendshipc Present 148 Absent 142 Hope of cure with medicationc Yes 248 No 42 Change in job after having mental illnessc,d Yes 177 No 113 Family history of mental illnessc No 179 Yes 111 Substance usee No 220 Yes 70 Other illnessc,e (self-reported) Absent 223 Present 67
Prevalence, n (%)
Odds Ratioa (95% CI)
51 (37.5) 64 (41.6)
1 1.19 (0.72-1.96)
52 (36.4) 63 (42.9)
1 1.31 (0.80-2.16)
66 (38.8) 49 (40.8)
1 1.09 (0.65-1.79)
7 (28.0) 108 (40.8)
1 1.75 (0.68-5.26)
106 (39.1) 9 (47.4)
1 1.40 (0.49-4.00)
39 (26.4) 76 (53.5)
1 3.22 (1.91-5.44)
90 (36.3) 25 (59.5)
1 2.58 (1.26-5.37)
60 (33.9) 55 (48.7)
1 1.85 (1.11-3.13)
64 (35.8) 51 (45.9)
1 1.54 (1.92-2.56)
86 (39.1) 29 (41.4)
1 1.10 (0.61-1.97)
80 (35.9) 35 (52.2)
1 1.96 (1.09-3.57)
aAdjusted
for treatment facility. < .05. cMean as cutoff. dStopped working or shifted to a different job. eTobacco use (smoking or smokeless tobacco) or alcohol use in past 30 days. bP
Participants in the present study who sought treatment from the community-based care were older than those receiving treatment from the psychiatric hospital–based care. A meta-analysis from the United States reveals the closure of gap in mental health care among older adults by community-based services.16 Although the total sample had equal numbers of males and females, gender difference was seen in the health seeking behavior. The majority of participants seeking treatment from community-based care were females, while those undergoing psychiatric hospital-based care were males. This is in line with WHO’s report on “Gender Disparities and Mental Health,” which found that females are more likely to seek help from and disclose mental health problems to their primary care physician while males are more likely to seek specialist services.17 Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
8
Asia-Pacific Journal of Public Health
Table 3. High Internalized Stigma and Illness-Related Factors. Variables
n
Diagnosisb (from medical records) Schizophrenia 79 Bipolar affective disorders 111 100 Othersc Age at onset of illness (years)d >25 160 ≤25 130 Treatment duration (years) ≤6 56 >6 234 Medication nonadherence (self-reported) 152 No 138 Yes No. of episodes of illness (past 6 months) 242
Assessment of Internalized Stigma Among Patients With Mental Disorders in Thiruvananthapuram District, Kerala, India Tintu T. James and V. Raman Kutty Asia Pac J Public Health published online 13 August 2014 DOI: 10.1177/1010539514545645 The online version of this article can be found at: http://aph.sagepub.com/content/early/2014/08/12/1010539514545645
Published by: http://www.sagepublications.com
On behalf of:
Asia-Pacific Academic Consortium for Public Health
Additional services and information for Asia-Pacific Journal of Public Health can be found at: Email Alerts: http://aph.sagepub.com/cgi/alerts Subscriptions: http://aph.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav
>> OnlineFirst Version of Record - Aug 13, 2014 What is This?
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
545645 research-article2014
APHXXX10.1177/1010539514545645Asia-Pacific Journal of Public HealthTintu and Kutty
Original Article
Assessment of Internalized Stigma Among Patients With Mental Disorders in Thiruvananthapuram District, Kerala, India
Asia-Pacific Journal of Public Health 1–11 © 2014 APJPH Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1010539514545645 aph.sagepub.com
Tintu T. James, MBA, MPH1, and V. Raman Kutty, MD, MPH1
Abstract This study aims to compare the prevalence of high internalized stigma of mental illness among patients attending community-based and psychiatric hospital–based care in Thiruvananthapuram district, Kerala, India and to examine the factors associated with high internalized stigma. A cross-sectional survey was conducted among 290 patients, mean age 45 years, 38.2% and 61.8% female. A Malayalam version of the Internalized Stigma of Mental Illness inventory was used for assessing internalized stigma. A multistage random sampling method was adopted. The prevalence of high internalized stigma was higher among patients from community-based care (44.7%) as compared with those from psychiatric hospital–based care (34.1%). Apart from treatment in community-based care, age ≤45 years, unemployment, absence of long-term friendships, no hope of cure with medication, presence of other illnesses, and substance use were significantly associated with high internalized stigma. More than one third of the subjects had high internalized stigma. Keywords community-based care, internalized stigma, Internalized Stigma of Mental Illness (ISMI) inventory, mental disorders, stigma
Introduction Globally, 1 in 4 people are affected by mental disorders at some stage in their lives.1 According to the World Health Organization (WHO), almost two thirds of people with mental disorders, globally, fail to avail professional health care.1 Epidemiological studies from India suggest that nearly 20% of the adult population suffer from 1 or more psychiatric disorders, which means that almost 200 million people in the country require professional help.2 One of the major barriers for people with mental disorders with respect to seeking health care early is stigma.3 Stigma is
1Sree
Chitra Tirunal Institute for Medical Sciences and Technology, Thiruvananthapuram, India
Corresponding Author: Tintu T. James, Project Manager, Achutha Menon Centre for Health Sciences Studies, Sree Chitra Tirunal Institute for Medical Science and Technology, Medical College, Thiruvananthapuram 695100, Kerala, India. Email: [email protected]
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
2
Asia-Pacific Journal of Public Health
unique in the way that it is influenced by all other barriers to seek health care, including lack of awareness, cultural issues, supernatural beliefs, and religious beliefs.4 According to Goffman,5 “stigma is a process by which the reaction of others spoils normal identity.” Stigma of mental illness manifests as public stigma and personal stigma. Public stigma is the reaction that people hold toward those with mental disorders. Personal stigma includes perceived stigma (individual’s thinking on society’s perception about the stigmatized group), experienced stigma (individual faces discrimination from the society), and internalized stigma (internalization of public stigma). Reactions to stigma by people with mental disorders vary from becoming energized or empowered to internalizing more stigma.6 Most of our understanding on internalized stigma originates from developed nations, which may not be applied to other settings because of the difference in the nature, source, and impact of stigma across cultures and regions.7 In India, studies have mostly focused on assessing stigma associated with mental disorders among family members, caretakers, or the general population.8 Appropriate attention has not been paid to stigma among patients with mental disorders. Kerala is one state that is more advanced in the epidemiological transition compared with other states in India. It is also distinguished by the high frequency of social ills. Per capita consumption of alcohol is highest in Kerala as compared with other Indian states. In 2009, Kerala recorded the fourth highest suicide rate in India (25.2 per 100 000 population), 2.5 times the national average. Divorce rate, prevalence of depression, demographic ageing, and family and marriage breakdown are high in Kerala.3 There are no studies on internalized stigma among patients with mental disorders in Kerala.9 In the present study, we compared the prevalence of high internalized stigma among patients with mental disorders attending community-based and psychiatric hospital–based care in Thiruvananthapuram district, Kerala. We also aimed to assess the factors associated with high internalized stigma among patients with mental disorders.
Methods Study Design and Setting A facility-based cross-sectional survey was conducted among 290 patients with mental disorders attending follow-up outpatient clinics of 13 randomly selected primary care centres (called “community-based care” in the present article) and a tertiary government psychiatric hospital (called “psychiatric hospital–based care” in the present article) in Thiruvananthapuram district, Kerala.
Sample Size The sample size was calculated using Epicalc package of R software version 3.0.2.10 Considering an expected prevalence of internalized stigma as 45% in hospital-based care and 25% in community-based care,7,8,11 the sample size was calculated to be 128, given a power of 90% and a significance level of 5%. Total sample size was calculated by multiplying this by 2, as the outpatient load were similar in both community- and hospital-based care settings.12 Considering a nonresponse rate of 20%, the sample size was calculated to be 310.
Sample Selection Procedure A multistage random sampling method was adopted to select participants from the primary care centers. First, we randomly selected 13 primary care centers from a total of 22 primary care
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
3
Tintu and Kutty
centers where the district mental health program has integrated mental health into primary care. The selected primary care centers include district hospitals (n = 1), taluk hospitals (n = 1, taluk is an administrative unit below the district level), regional health centers (n = 1), community health centers (n = 5), and primary health centers (n = 5). Second, we randomly selected a minimum of 10 participants from the daily outpatient list of each of the selected primary care centers. A systematic random sampling technique was used to select participants from the Mental Health Centre (MHC). The number of outpatients per day in the MHC was between 150 and 170. On the day of data collection, every fifth patient in the registration list was approached and those who satisfied the inclusion criteria were selected. Patients aged 18 years and older with a clinical diagnosis of mental disorders (using the International Classification of Diseases–10th revision) for more than 6 months were included in the study. Mentally retarded, deaf and dumb, or participants having incoherent speech were excluded from the study.
Data Collection The interviews were conducted by a single interviewer (the first author of this article) using a questionnaire that consisted of the Internalized Stigma of Mental Illness (ISMI) inventory and questions on sociodemographic characteristics, psychosocial factors, and illness-related factors.13 The ISMI was selected to assess internalized stigma because it has been tested in different cultural settings and found to be valid and reliable. It can be applied to patients with various mental disorders, and there are no item in the scale referring to past episodes of discrimination.14 The ISMI assesses 5 dimensions of internalized stigma (alienation, stereotype endorsement, discrimination experience, social withdrawal, stigma resistance) by means of 29 items. No version of the ISMI was available for speakers of Malayalam, which is the primary language spoken in Kerala, India. The instrument was therefore translated from English to Malayalam using forward and backward translation with the backward translation being reviewed by Jennifer Boyd Ritsher, the developer of the original ISMI. The Malayalam version showed satisfactory reliability and construct validity as assessed by confirmatory factor analysis. In addition, the translated instrument was given to the experts in the field of epidemiology (n = 1), stigma research (n = 2), psychiatry (n = 2), and clinical psychology (n = 2) who confirmed the face and content validity of the instrument for the population of Kerala. The details of the validation study will be published elsewhere and are available on request. As a measure for internalized stigma, a total mean score consisting of the ISMI alienation, stereotype endorsement, discrimination experience and social withdrawal subscale was calculated ranging from 1 to 4. It was categorized into 2 groups as proposed by Ritsher et al.13 Participants with a total score between 1.00 and 2.50 were classified as having low internalized stigma, participants with a total score between 2.51 and 4.00 were classified as having high internalized stigma. In line with other studies in the field, the stigma resistance scale was not considered in the calculation of the total score because of a low internal consistency. Apart from internalized stigma, the interview inventory also collected information on sociodemographic characteristics, psychosocial factors, and illness-related factors. Questions were asked to capture social support, hope in cure, family support, and severity of illness.
Statistical Analysis Data entry was done using Epidata version 1.3.2.1. The data were then imported to R version 3.0.2 for analysis.15 Pearson’s χ2 tests and independent t test were used for purposes of data description. Difference in prevalence was calculated to compare the prevalence of internalized
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
4
Asia-Pacific Journal of Public Health
stigma between the community-based care and the hospital-based care. We used bivariate logistic regression followed by stepwise multivariate logistic regression to identify the significant factors independently associated with high internalized stigma. The model was built in the following stepwise manner: Step 1: Treatment facility (distal variable) was included in the model. Step 2: Treatment facility was retained. Age, sex, and residence along with other sociodemographic characteristics (intermediate variables) with P ≤ .1 in bivariate analysis were included in the model. Step 3: Keeping those variables with P ≤ .1 from the previous step, the psychosocial factors (intermediate variables) with P ≤ .1 were added to the model. Step 4: Variables with P ≤ .1 from step 3 were added along with the illness-related factors (proximal variables) with P ≤ .1. Step 5: The final model was derived by the “backward likelihood ratio” method; variables with P < .05 were retained at this stage. The study was approved by the District Medical Officer, Thiruvananthapuram; by the Institutional Ethical Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology; and by the Ethics Committee of District Mental Health Programme and Institutional Ethical Committee of Mental Health Center, Thiruvananthapuram.
Results Sample Characteristics Table 1 presents the sample characteristics. The majority of the participants were from rural areas (92.1%). Participants from psychiatric hospital–based care were more educated, less likely to be employed, single, suffering from bipolar affective disorders, and had more relapses than those from community-based care. The majority of participants in the overall sample were living in a joint family (86.6%). A large proportion of participants (91.4%) in the overall sample accepted that they are suffering from mental disorders. A high proportion of participants in the overall sample (85.5%) had the hope that their illness will be cured with medication. Alcohol use was less prevalent (5.9%) than tobacco use (23.4%) in the overall sample; in further analysis, both alcohol and tobacco use were combined under “substance use.” Slightly more than three fourths (76.9%) of overall participants were free from any other illnesses such as diabetes, hypertension, or hypercholesteremia. The overall sample median age at onset of illness was 27.0 ± 10.6 (SD) years.
Validity and Reliability of the Malayalam Version of ISMI The items of the scale were found to be adequate and appropriate for use by each expert who evaluated the scale. Cronbach’s α of the scale among study sample (n = 290) was .93 and split half reliability of the scale in the study sample (n = 290) was .82. Figure 1 shows the responses to ISMI items.
Prevalence of High Internalized Stigma The total score was calculated by adding the scores of all 22 items and dividing by 22. The total score ranges from 1.00 to 4.00. The total score was categorized into 2 groups using the method adopted by Ritsher et al13
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
5
Tintu and Kutty Table 1. Sociodemographic, Psychosocial, and Illness-Related Characteristics of the Sample. Variables Agea in years, mean ± SD Sexb Male Female Place of residence Urban Rural Educationb High school or above Below high school Occupationb Employed Unemployed Marital statusb Single Currently married Widowed Divorced/separated Family type Nuclear Joint Diagnosis (from medical records)b Schizophrenia Bipolar affective disorders Othersc Acceptance of having mental illness Yes No Substance useb,d Yes No Hope of cure with medication Yes No Other illnesse (self-reported) Diabetes Hypertension Hypercholesterolemia None Age at onset of illness (years)f ≤25 >25 No. of relapses after starting treatmentb ≤4 >4
Community-Based Care (N = 152), n (%)
Psychiatric Hospital–Based Care (N = 138), n (%)
47.2 ± 11.7
42.4 ± 10.5
58 (38.2) 94 (61.8)
85 (61.6) 53 (38.4)
8 (5.3) 144 (94.7)
15 (10.9) 123 (89.1)
76 (50.0) 76 (50.0)
94 (68.1) 44 (31.9)
67 (44.1) 85 (55.9)
81 (58.7) 57 (41.3)
31 (20.4) 83 (54.6) 17 (11.2) 21 (13.8)
50 (36.2) 60 (43.5) 10 (7.3) 18 (13.0)
24 (15.8) 128 (84.2)
15 (10.9) 123 (89.1)
45 (29.6) 44 (28.9) 63 (41.5)
34 (24.6) 67 (48.6) 37 (26.8)
138 (90.8) 14 (9.2)
127 (92.0) 11 (8.0)
29 (19.1) 123 (80.9)
41 (29.7) 97 (70.3)
132 (86.8) 20 (13.2)
116 (84.1) 22 (15.9)
25 (16.4) 22 (14.3) 6 (3.9) 115 (75.7)
22 (15.9) 15 (10.9) 8 (5.8) 108 (78.3)
60 (39.5) 92 (60.5)
70 (50.7) 68 (49.3)
91 (59.9) 61 (40.1)
54 (39.1) 84 (60.9)
Test, P < .05. test, P < .05. cDepressive disorders, psychosis, alcohol-dependent syndrome, epilepsy, dementia, and anxiety disorders. dTobacco use (smoking or smokeless tobacco) or alcohol use in past 30 days. ePercentages do not add to 100% because of the coexistence of more than 1 illness. fMedian as cutoff. at
bChi-square
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
6
Asia-Pacific Journal of Public Health
Alieniaon
Stereotype Discriminao Social Endorsement n Experience Withdrawal
Protect family Isolated Reduced socializaon People disinterested Patronized
Proporon of parcipants agree Proporon of parcipants strongly agree
Contribuons Known by looks Violent Others can't understand Feel inferior Out of place 0
10
20
30
40
50
60
70
Figure 1. Proportion of participants who agreed or strongly agreed to the Internalized Stigma of Mental Illness Inventory (ISMI) items.
Low internalized stigma: Participants with a total score between 1.00 and 2.50 were classified as having low internalized stigma. High internalized stigma: Participants with a total score between 2.51 and 4.00 were classified as having high internalized stigma. The prevalence of high internalized stigma was higher among participants from communitybased care (44.7%) as compared with those from psychiatric hospital–based care (34.1%). The 95% confidence interval (CI) for the difference in proportion between the 2 groups was from −0.005 to 0.218. But internalized stigma was found to be significantly higher among participants from community-based care in comparison with hospital-based care, when adjusted for sociodemographic, psychosocial, and illness-related factors (95% CI = 1.01-3.13).
Factors Associated With Internalized Stigma Tables 2 and 3 show the bivariate analysis for the factors associated with high internalized stigma. Participants who were having any symptoms of mental disorders in the past year had a 2.1 times higher chance (OR = 2.11) of experiencing high internalized stigma as compared with those with no symptoms in the past year. Results of the multivariate analysis are shown in Table 4. Treatment in community-based care, age ≤45 years, unemployment, absence of long-term friendship, no hope of cure with medication, presence of other illness, and substance use were independently associated with high internalized stigma (Table 4).
Discussion For people with mental disorders, internalized stigma is a significant barrier with respect to seeking health care. Little is known about internalized stigma of mental illness in India. To the best of our knowledge, the present study is the first to examine the prevalence and correlates of high internalized stigma of mental illness in community- and hospital-based care settings in a region of India.
Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
7
Tintu and Kutty Table 2. Association of High Internalized Stigma With Sociodemographic Characteristics and Psychosocial Factors. Variables
n
Ageb (years) >45 136 ≤45 154 Sex Male 143 Female 147 Education High school or above 170 Below high school 120 Acceptance of having mental illness No 25 Yes 265 Living status Living alone 19 Living with family 271 Long-term friendshipc Present 148 Absent 142 Hope of cure with medicationc Yes 248 No 42 Change in job after having mental illnessc,d Yes 177 No 113 Family history of mental illnessc No 179 Yes 111 Substance usee No 220 Yes 70 Other illnessc,e (self-reported) Absent 223 Present 67
Prevalence, n (%)
Odds Ratioa (95% CI)
51 (37.5) 64 (41.6)
1 1.19 (0.72-1.96)
52 (36.4) 63 (42.9)
1 1.31 (0.80-2.16)
66 (38.8) 49 (40.8)
1 1.09 (0.65-1.79)
7 (28.0) 108 (40.8)
1 1.75 (0.68-5.26)
106 (39.1) 9 (47.4)
1 1.40 (0.49-4.00)
39 (26.4) 76 (53.5)
1 3.22 (1.91-5.44)
90 (36.3) 25 (59.5)
1 2.58 (1.26-5.37)
60 (33.9) 55 (48.7)
1 1.85 (1.11-3.13)
64 (35.8) 51 (45.9)
1 1.54 (1.92-2.56)
86 (39.1) 29 (41.4)
1 1.10 (0.61-1.97)
80 (35.9) 35 (52.2)
1 1.96 (1.09-3.57)
aAdjusted
for treatment facility. < .05. cMean as cutoff. dStopped working or shifted to a different job. eTobacco use (smoking or smokeless tobacco) or alcohol use in past 30 days. bP
Participants in the present study who sought treatment from the community-based care were older than those receiving treatment from the psychiatric hospital–based care. A meta-analysis from the United States reveals the closure of gap in mental health care among older adults by community-based services.16 Although the total sample had equal numbers of males and females, gender difference was seen in the health seeking behavior. The majority of participants seeking treatment from community-based care were females, while those undergoing psychiatric hospital-based care were males. This is in line with WHO’s report on “Gender Disparities and Mental Health,” which found that females are more likely to seek help from and disclose mental health problems to their primary care physician while males are more likely to seek specialist services.17 Downloaded from aph.sagepub.com at SUNY BINGHAMTON on August 21, 2014
8
Asia-Pacific Journal of Public Health
Table 3. High Internalized Stigma and Illness-Related Factors. Variables
n
Diagnosisb (from medical records) Schizophrenia 79 Bipolar affective disorders 111 100 Othersc Age at onset of illness (years)d >25 160 ≤25 130 Treatment duration (years) ≤6 56 >6 234 Medication nonadherence (self-reported) 152 No 138 Yes No. of episodes of illness (past 6 months) 242
