Journal of Ethnicity in Substance Abuse

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Internalized stigma among patients with substance use disorders at a tertiary care center in India Siddharth Sarkar, Yatan Pal Singh Balhara, Saurabh Kumar, Vinay Saini, Akriti Kamran, Vaibhav Patil, Swarndeep Singh & Shreeya Gyawali To cite this article: Siddharth Sarkar, Yatan Pal Singh Balhara, Saurabh Kumar, Vinay Saini, Akriti Kamran, Vaibhav Patil, Swarndeep Singh & Shreeya Gyawali (2017): Internalized stigma among patients with substance use disorders at a tertiary care center in India, Journal of Ethnicity in Substance Abuse, DOI: 10.1080/15332640.2017.1357158 To link to this article: http://dx.doi.org/10.1080/15332640.2017.1357158

Published online: 12 Sep 2017.

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Date: 24 September 2017, At: 06:56

JOURNAL OF ETHNICITY IN SUBSTANCE ABUSE https://doi.org/10.1080/15332640.2017.1357158

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Internalized stigma among patients with substance use disorders at a tertiary care center in India Siddharth Sarkar , Yatan Pal Singh Balhara, Saurabh Kumar, Vinay Saini, Akriti Kamran, Vaibhav Patil, Swarndeep Singh, and Shreeya Gyawali

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All India Institute of Medical Sciences, New Delhi, India ABSTRACT

KEYWORDS

Internalized stigma among individuals with substance use disorders is a major barrier for accessing mental health services. This study aimed to assess internalized stigma among individuals with substance use disorders and to assess the relationship of internalized stigma with the quality of life. This cross-sectional study recruited 201 patients with a clinical diagnosis of at least opioid or alcohol use disorder according to Diagnostic and Statistical Manual 5 at a public-funded tertiary care center in India. The study participants were interviewed using a sociodemographic questionnaire, the Internalized Stigma of Mental Illness Scale (ISMIS), and the World Health Organization’s Quality of Life (WHOQOL-Bref) questionnaire. Seven participants (3.5% of the sample) had mild stigma according to ISMI scores, 62 (30.8%) had moderate stigma, and 132 (65.7%) had severe stigma. The various quality-of-life domains generally had a negative correlation with the internalized stigma scores. Participants using opioids as the primary substance of use were more likely to have severe internalized stigma. The experience of internalized stigma and dissatisfaction with quality of life is quite high among people suffering with substance use disorders in India. These results emphasize the need for interventions to reduce internal perception of stigma and improve the quality of life of individuals with substance use disorders.

Drug abuse; India; quality of life; stigma; substance use disorders

Introduction Substance use disorders contribute to a substantial proportion of the global burden of diseases (Rehm et al., 2009). Drug and alcohol use disorders contribute to almost one fifth of all disability-adjusted life years caused by mental and substance use disorders (Whiteford et al., 2013). Prevalence studies from India have also suggested that substance use disorders affect a substantial proportion of the population (Murthy, Manjunatha, Subodh, Chand, & Benegal, 2010). Given the vast population, the actual numbers of patients with substance use disorders are quite high and require clinical CONTACT Dr. Siddharth Sarkar, Assistant Professor [email protected] Department of Psychiatry and National Drug Dependence Treatment Centre, All India Institute of Medical Sciences, Ansari Nagar, New Delhi, India, 110029. © 2017 Taylor & Francis

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attention. Even with this enormous burden, a significant proportion of the individuals with substance use disorders fail to receive any treatment, with a treatment gap. A recent report from India suggested that among patients with psychiatric illnesses, those with alcohol use disorders had the highest treatment gap, and more than 85% of such patients did not receive treatment (Gururaj et al., 2016). Substance use disorders have often been considered a stigmatizing condition (Mattoo et al., 2015). Stigma can be described as a sociocultural process in which specific social groups are devalued, rejected, and excluded on the basis of a socially discredited health condition (Weiss, Ramakrishna, & Somma, 2006). Substance users may experience stigma due to various reasons, including association with social and economic problems, involvement in illegal activities to procure the substances, co-existence of other stigmatizing health conditions such as HIV, indulgence in potentially risky behaviors, and a moralistic stance of the society toward substance use disorder (Rao et al., 2009; Ronzani, Higgins-Biddle, & Furtado, 2009). Stigma among substance users has been associated with poorer drinking self-refusal efficacy and a greater likelihood of facing structural discrimination (Schomerus et al., 2011). Stigma is a multidimensional construct with different researchers describing different types of stigma including public, perceived, enacted, and self-stigma. Self-stigma is defined as the stigma that is internalized by an individual and is applied to him or herself or to other people with similar conditions. It develops in stages; initially the person with substance use disorder becomes aware of the public views about the condition (awareness), which is followed by agreeing with the negative stereotypes (agreement). Subsequently, the person concurs that the stereotype applies to him- or herself (application), resulting in decreased self-esteem and self-efficacy (Corrigan & Rao, 2012). Internalization of stigma can not only manifest in the form of selfstigma with low self-esteem and low self-efficacy, but may also lead individuals to become empowered or energized or to remain unaffected (Watson, Corrigan, Larson, & Sells, 2007). Thus, self-stigma largely overlaps with internalized stigma. Individuals with internalized stigma have been shown to have negative psychological state and avoidant coping, which results in social avoidance (Lysaker, Roe, & Yanos, 2007; Ritsher & Phelan, 2004). Stigma associated with substance use has been shown to be one of the potential barriers for accessing treatment (Fortney et al., 2004). Even when patients with substance use disorders seek treatment, they are at times subjected to discrimination and devaluation from the treatment providers (Rao et al., 2009). If the patients with substance use disorders are dissuaded to seek treatment, then the adverse consequences of substance use disorders are likely to continue. Stigma is also associated with poor treatment outcomes and lower persistence in accessing mental health services

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and other supports (Mosanya, Adelufosi, Adebowale, Ogunwale, & Adebayo, 2014; Corrigan, 2004). People suffering from substance use disorders have been shown to have poor quality of life and significant disability (De Maeyer, Vanderplasschen & Broekaert, 2010; Donovan, Mattson, Cisler, Longabaugh, & Zweben, 2005; Compton, Thomas, Stinson, & Grant, 2007). Self-stigma particularly affects quality of life among individuals with mental illnesses (Yen et al., 2009). Internalized stigma in individuals with substance use disorders has been seldom researched alone. Gauging the individual contribution of substance use–related stigma can lead to a better conceptual understanding of this complex phenomenon (Brown, 2011). Another limitation in this field of research is that most of these studies are from the western industrialized world, reflecting the attributes of stigma among substance users in a particular cultural setting. It has been suggested that cultural factors may influence the expression of stigma (Thornicroft et al., 2009). Given the unique cultural attributes in the Indian subcontinent, there remains a need to understand the facets of substance use–related stigma in this setting. Hence, we aimed to assess internalized stigma among substance users seeking treatment at a de-addiction center in India and attempted to assess the relationship of internalized stigma with the quality of life.

Methodology Study setting and participants

This cross-sectional observational study was conducted at a public-funded tertiary care center in India. The center is in the National Capital Region of Delhi and receives patients mainly from north India. The center caters to both referred and nonreferred patients. The clientele comprises primarily patients with opioid and/or alcohol dependence. The treatment approach follows a medical model. The center provides both inpatient and outpatient treatment facility, and treatment options comprise pharmacotherapy, psychotherapy, and rehabilitation measures. For opioid-dependent patients, the center has the provision of long-term opioid agonist management in the form of buprenorphine for those who do not choose detoxification. A team of trained psychiatrists, psychologists, social workers, and nursing staff provide care for patients at the center. This study included participants aged between 18 and 65 years with a clinical diagnosis of at least opioid or alcohol use disorder according to Diagnostic and Statistical Manual 5 (DSM 5). Patients were included from both the inpatient and the outpatient services of the center. Those who were not willing to participate or did not complete the questionnaires were excluded.

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Procedure

Patients who attended the outpatient or the inpatient setting were offered participation, and those who gave informed consent were included. Sampling of convenience was used to recruit the participants for the study. Individuals who fulfilled the inclusion and exclusion criteria were recruited in the study after obtaining informed consent. They were assessed for demographic and clinical data using a structured questionnaire. Internalized stigma was measured using Internalized Stigma of Mental Illness Scale (ISMIS). The World Health Organization’s Quality of Life (WHOQOL-Bref) questionnaire was used to assess the quality of life. Data collection was carried out by trained psychiatrists in a single sitting. The study had institutional ethics committee approval. Instruments Internalized stigma of mental illness scale (ISMIS) The Internalized Stigma of Mental Illness Scale (ISMIS) was developed by Ritsher, Otilingam, and Grajales (2003) and is used to measure internalized stigma of individuals with mental illness. The scale consists of a 29-item questionnaire that assesses subjective experience of stigma (Ritsher et al., 2003). The responses are based on a 4 point Likert scale, from strongly agree to strongly disagree. Items are summed to provide five scale scores: alienation, stereotype endorsement, discrimination experience, social withdrawal, and stigma resistance. The total item score of ISMIS varies between 1 and 4 points. Higher scores of ISMIS indicate greater degree of stigma. The intensity of stigma can be rated according to ISMIS scores as follows: a score of 2 or lower indicates minimum intensity, scores between 2 and 2.49 indicate mild intensity, scores between 2.5 and 3 indicate moderate intensity, and scores of more than 3 indicate severe intensity (Lysaker et al., 2007). The instrument has been translated into various languages, including Hindi (Singh, Grover, & Mattoo, 2016), and has been utilized in varied cultural contexts. An adaptation of the scale has been made for patients with substance use disorders and has shown a high degree of internal consistency (Luoma, Kohlenberg, Hayes, Bunting, & Rye, 2008). World health organization of quality of life-bref The WHOQOL-Bref (WHO, 1996) is a 26-item questionnaire that measures subjective quality of life. The statements of this questionnaire are rated on a 5-point Likert scale. The quality of life is computed in four domains (physical, psychological, social, and environmental), which denote respondents’ perception of their quality of life in each domain. The mean scores of items in each domain are used to calculate the domain score. The scale has been validated in Hindi (Saxena, Chandiramani, & Bhargava, 1998).

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Statistical analysis

Statistical analysis was carried out using SPSS version 21 (Armonk, NY, IBM Corp). Descriptive statistics were used to represent frequency and percentages for categorical variables. Mean and standard deviation were used to represent the measures of central tendency and dispersion for continuous variables. Pearson’s correlation coefficient was used to assess the relationship between ISMI and WHOQOL-Bref domain scores. The associations between mean stigma scale scores and various demographic or clinical characteristics of the sample were assessed using independent t test or one-way analysis of variance. Further, subgroup analysis was performed to examine the differences in demographic and clinical characteristics between the mild–moderate and severe internalized stigma groups. A p value of < .05 was considered significant. Missing value imputation was not conducted.

Results A total of 219 individuals were approached for the study, and 201 were finally included. Among the 18 individuals who were excluded, information was incomplete for 10 participants, primary substance of use did not include opioids or alcohol for seven participants, and age was more than 65 for one. The characteristics of the 201 included participants are shown in Table 1. The participants comprised primarily males, were educated up to 10th grade, were employed, and belonged to an urban background. More than half of the participants belonged to a nuclear family. The sample largely consisted of patients with opioids as the primary substance of use. Less than a third of the sample were injecting drug users. About a tenth of the participants had high-risk sexual behavior. Less than a fourth of the participants reported being ever caught by the police, and about 15% of the sample had a history of incarceration. The frequency distribution of itemized responses for all 29 questions in the ISMI scale is presented in Table 2. The Cronbach’s alpha value for ISMIS was .894. The mean scores on different domains of internalized stigma scale are shown in Table 3. Among the five ISMIS subscale scores, alienation scores were higher than those of social withdrawal, discrimination, stereotype, and stigma resistance. Seven participants (3.5% of the sample) had mild stigma according to ISMIS scores, 62 (30.8%) had moderate stigma, and 132 (65.7%) had severe stigma. The domain scores of quality of life are presented in Table 3. Among the quality-of-life domains, the lowest scores were for the domain of social quality of life. The study sample was divided into two groups: mild–moderate internal stigma (ISMI total score = 2–3) and severe internal stigma (ISMI total score >3). The relationship between sociodemographic and clinical characteristics

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Table 1. Characteristics of the patients.

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Variable

Mean (SD) or N (%)

Age (in years) Gender Male Female Education Up to 10th grade Above 10th grade Employment status Currently employed Currently not employed Residence Urban Rural Family type Living Alone Nuclear family Extended/ joint family Primary substance of use Opioid Alcohol Duration of substance use (in years) Injecting drug use High risk sexual behaviour Caught by police History of incarceration

33.0 (10.6) 200 (99.5%) 1 (0.5%) 132 (65.7%) 69 (34.3%) 172 (85.6%) 29 (14.4%) 166 (82.6%) 35 (17.4%) 7 (3.5%) 116 (57.7%) 78 (38.8%) 168 33 11.4 59 20 46 29

(83.6%) (16.4%) (8.6) (29.4%) (10.0%) (22.9%) (14.4%)

SD = standard deviation.

Table 2.

Frequency of responses to internalized stigma of mental illness items (N = 201).

Questions/subscales Alienation I feel out of place in the world because I have SUD Having a SUD has spoiled my life People without SUD could not possibly understand me I am embarrassed or ashamed that I have a SUD I am disappointed in myself for having a SUD I feel inferior to others who don’t have SUD Stereotype endorsement Stereotypes about the SUD apply to me People can tell that I have a SUD by the way I look People with SUD tend to be violent Because I have a SUD, I need others to make most decisions for me People with SUD cannot live a good, rewarding life SUD people shouldn’t get married I can’t contribute anything to society because I have a SUD Discrimination experience People discriminate against me because I have SUD

Strongly disagree (%)

Disagree (%)

Agree (%)

Strongly agree (%)

1.5 0 0

6.0 20.9 5.5

51.7 54.2 64.2

40.8 24.9 30.3

2.0 0.5 3.0

11.4 4.0 28.9

60.2 48.3 45.3

26.4 47.3 22.9

5.5 0 0 3.0

39.3 10.4 11.9 11.9

48.3 60.2 61.7 54.7

7.0 29.4 26.4 30.3

0 0 1.0

10.9 6.5 11.9

71.6 74.6 65.7

17.4 18.9 21.4

7.0 7.0

37.3 34.8

42.8 49.3

12.9 9.0

(Continued)

JOURNAL OF ETHNICITY IN SUBSTANCE ABUSE

Table 2.

Continued.

Questions/subscales

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Others think that I can’t achieve much in life because I have a SUD People ignore me or take me less seriously just because I have a SUD People often patronize me, or treat me like a child, just because I have a SUD Nobody would be interested in getting close to me because I have a SUD Social withdrawal I don’t talk about myself much because I don’t want to burden others with my SUD I don’t socialize as much as I used to because my SUD might make me look or behave “weird” Negative stereotypes about SUD keep me isolated from the “normal” world I stay away from social situations in order to protect my family or friends from embarrassment Being around people who don’t have a SUD makes me feel out of place or inadequate I avoid getting close to people who don’t have a SUD to avoid rejection Stigma resistance (reverse-coded items) I feel comfortable being seen in public with an obvious SUD In general, I am able to live my life the way I want to I can have a good, fulfilling life, despite my SUD People with SUD make important contributions to society Living with SUD has made me a tough survivor

Strongly disagree (%)

Disagree (%)

Agree (%)

Strongly agree (%)

0.5

2.5

60.2

36.8

0

7.5

53.2

39.3

3.5

19.4

55.2

21.9

1.5

36.8

53.2

8.5

0

9.0

60.7

30.3

0

16.4

68.2

15.4

0

6.0

73.1

20.9

3.0

41.8

47.8

7.5

1.0

16.5

73.0

9.5

1.5

20.9

58.2

19.4

2.0 10.0 2.0

18.9 47.8 8.0

72.1 35.3 70.1

7.0 7.0 19.9

0.5

5.5

80.1

13.9

SUD = substance use disorders.

of the study sample with internalized stigma among the two groups is described in Table 4. Participants with severe internalized stigma were significantly more likely to be using opioids as the primary substance of use (χ2 = 5.173, p = .028). However, no significant relationships were found Table 3. Stigma-related measures and quality of life. Variable ISMI subscale scores Alienation Stereotype Discrimination Social withdrawal Stigma resistance ISMI Total Quality-of-life domains Physical Psychological Social Environmental

Mean (SD) 3.26 2.91 3.01 3.12 2.67 3.11

(0.41) (0.40) (0.40) (0.41) (0.33) (0.29)

11.30 11.20 10.67 12.07

(2.42) (2.38) (2.83) (2.54)

ISMI = internalized stigma of mental illness; SD = standard deviation.

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Table 4. Relationship of sociodemographic and clinical characteristics of the participants with internalized stigma (N = 201).

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Variable

Mild–moderate stigma group

Education Up to 10th standard Above 10th standard Employment status Unemployed Employed Family type Alone Nuclear Extended Place of residence Urban Rural Primary substance of use Opioids Alcohol Injecting drug use No Yes High-risk behaviour No Yes Ever caught by police No Yes Legal case pending No Yes Incarceration in prison No Yes Involvement in drug peddling No Yes

Severe stigma group

χ2 (p value)

44 (33.3) 59 (36.2)

88 (66.7) 44 (63.8)

0.169 (.755)

10 (34.5) 59 (34.3)

19 (65.5) 113 (65.7)

0.000 (1.000)

2 (28.6) 41 (35.3) 26 (33.3)

5 (71.4) 75 (64.7) 52 (66.7)

0.190 (.909)

60 (36.1) 9 (25.7)

106 (63.9) 26 (74.3)

1.395 (.327)

52 (31.0) 19 (33.2)

116 (63.9) 16 (48.5)

5.173 (.028)*

50 (35.2) 19 (33.2)

92 (64.8) 40 (67.8)

0.167 (.746)

63 (34.8) 6 (30.0)

118 (65.2) 14 (70.0)

0.185 (.806)

55 (35.5) 14 (30.4)

100 (64.5) 32 (69.6)

0.401 (.598)

66 (34.6) 3 (30.0)

125 (65.4) 7 (70.0)

0.087 (1.000)

61 (35.5) 8 (27.6)

111 (64.5) 19 (72.4)

0.683 (.527)

68 (34.7) 1 (20.0)

128 (65.3) 4 (80.0)

0.467 (.662)

Values presented as n (%). Fisher’s exact test used when number of participants in a cell was

Internalized stigma among patients with substance use disorders at a tertiary care center in India.

Internalized stigma among individuals with substance use disorders is a major barrier for accessing mental health services. This study aimed to assess...
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