Introduction

Stigma is recognized as a major barrier to health-seeking behavior and treatment compliance across a variety of health issues (Digiusto & Treloar, 2007; Fox et al., 2018; Stangl et al., 2019; Tan et al., 2020; Volkow, 2020). In ancient Greece, ‘Stigma’ meant a burn, mark, or tattoo on an individual as a sign of shame, punishment or disgrace (Economou et al., 2020). In the present context, it can be defined as ‘a negative social attitude attached to a characteristic of an individual that may be regarded as a mental, physical, or social deficiency'. Stigma implies social disapproval and can lead unfairly to discrimination against and exclusion of the individual (American Psychological Association, 2023). Other factors that are associated with stigma includes gender, race, age, locality, socioeconomic position, and level of education, sexual orientation, as well as the length of drug use (Ghosh et al., 2022; Gyawali et al., 2018; Paquette et al., 2018).

Stigma has personal, social and structural dimensions. Social stigma refers to the negative or discriminatory attitudes that others have, for example, to a person with a substance use disorder. Structural stigma is more systemic and refers to government and non-government policies that intentionally or unintentionally constrain opportunities for certain people, and self-stigma, also known as internalized stigma, is the term used to describe someone's negative attitudes toward their own predicament (Borenstein, 2020; Corrigan et al., 2012; Livingston et al., 2012).

Internalized stigma can be defined as a process whereby affected individuals accept projected stereotypes, expect social rejection, and believe the stereotypes to be relevant to them personally (Livingston & Boyd, 2010). Internalized stigma has also been described as a self-devaluation process, constituting the following stages. First, awareness of negative attitude held towards you (e.g., “They say people using drugs are irresponsible”); second, agreement or consensus with public opinions (e.g., “I think drug users are not responsible”); third, application of stereotype to self (e.g., “I am irresponsible because I use drugs”) which leads to the reduced self-esteem and self-efficacy (Ali, 2019; Corrigan et al., 2009).

Substance use disorders face greater stigma compared to other health issues (Ronzani et al., 2009; Schomerus et al., 2011). Additionally, substance use behaviors are connected to a variety of other stigmatized health conditions (e.g., HIV/AIDS, mental disorders, viral Hepatitis, etc.), risky behaviors, and other societal issues like poverty and criminality (Dean & Rud, 1984; Degenhardt et al., 2023; Habib & Adorjany, 2003; Livingston et al., 2012). Extensive research indicates that those who experience internalized stigma are more likely to have poor mental health and can engage in avoidant coping, which leads to social withdrawal (Lysaker et al., 2007; Ritsher & Phelan, 2004). Internalized stigma has also been linked to engaging in risky behaviours, higher levels of psychological distress and lower quality of life (Sarkar et al., 2017), severity of mental disorders and poor treatment adherence (Livingston & Boyd, 2010). Internalized stigma and dissatisfaction with quality of life are high among people with substance use disorders. However, there is evidence that the impacts of stigma can be alleviated, for example the perception of support from friends and family can reduce the impact of perceived stigma on depression among people with drug use disorders (Chang et al., 2022). Despite evidence for interventions that can reduce the impacts of stigma, it remains an important issue among individuals with opioid dependence on their quality of life, health services access, delays in service utilization and retention in treatment and, more broadly, participation in society.

The existing drug policies in Nepal tend to criminalize personal use and possession of substance and not see substance use behaviors from a medical perspective. This approach can create fear of arrest along with increased stigma and discrimination which in-turn may create barriers for people who use drugs to seek treatment and receive care, and makes recovery, rehabilitation, and reintegration into the community difficult (Pant et al., 2023a, b).

Opioid Agonist Treatment (OAT), effective evidence supported modality of treatment has been used to support rehabilitation and recovery among people with opioid use disorders in the community rather than residential rehabilitation homes and treatment centers (McKetin et al., 2023). After more than 15 years since re-introduction of OAT services in Nepal, the OAT program has had barriers to expansion of service sites, enrollment rates and retention of service clients. The number of OAT service users (methadone and buprenorphine combined) in Nepal reduced from about 1300 to 900 five years later in 2020 (Asian Network of People who Use Drugs, 2019; National Center for AIDS and STD Control, 2020). While there are many factors related to this, such as changes in structural funding, policy barriers for expansion of OAT services, inadequate demand generation activities targeting OAT, defect in inter-sectoral co-ordination mechanism between relevant stakeholders and the COVID-19 pandemic played a role. However, stigma and discrimination towards people who use drugs including service users at a community, family and structural level, and existing internalized stigma among OAT service users may have led to underutilization of OAT services (Ambekar et al., 2010; National Center for AIDS and STD Control, 2020; Pant et al., 2022; Pant, Thapa, et al., 2023). From a service users’ perspective, the maintenance of ‘addict/ junkie’ identification and the societal expectation of recovery as abstinence or completion of treatment worsens internalized stigma (Carlisle et al., 2023; Cheetham et al., 2022). OAT services provided in Nepal by government hospitals and non-governmental organizations are psycho-socially assisted, free of cost, low-threshold, bound by rules of strict privacy and confidentiality and with representation and engagement of service receiver/ ex-drug user. However, service users have reported a wide variation in service-based stigma, perceived confidentiality, and staff behavior including use of stigmatizing language and discriminatory conduct (Asian Network of People who Use Drugs, 2019). Such experiences are important factors that intensify stigma among service users.

To our knowledge, no study has been conducted to better understand internalized stigma among OAT users in Nepal. Therefore, this study aims;

  • To explore internalized stigma among Opioid Agonist Treatment (OAT) service users and how it is associated with sociodemographic characteristics and mental disorders.

  • To examine domains of Quality of Life (QoL) among OAT service users with high and low internalized stigma.

Method

Setting

A cross-sectional study was conducted across five OAT service providers in the Kathmandu Valley from January 2021 to August 2021. A government and a community-based organization (CBO) run site were chosen from Kathmandu and Lalitpur metropolitan areas of Kathmandu Valley, while only a CBO was chosen at Bhaktapur in the absence of another service provider. The Kathmandu Valley was chosen for convenience, and it is representative of OAT service users across the country. In addition, it is the only geographical area with provision of OAT through both government hospitals and non-government/ community setting.

Recruitment and Participants

The required total sample size was calculated by using single population proportion formula for finite population and was determined to be 247 after adding 15% non-response rate. The final number of service users who participated in the study was 231 with a response rate of 93.52%. Each of the five OAT sites were considered as the Primary Sample Units (PSU). The number of participants for each PSU was calculated proportionately based on the existing number of service users in each OAT site. From each OAT site, the non-identifying serial numbers were listed for all potential service users who were then selected through computer generated random numbers. The total number of participants from Kathmandu, Lalitpur and Bhaktapur were 92, 109 and 30 respectively. The details of methodology used in this study is available in a previously published articles (Pant et al., 2022; Pant et al., 2023a, b).

Measurement

Socio-Demographic Questionnaire

Socio-demographic questionnaires were designed to collect participant data for demographic characteristics which included age, gender, educational attainment, employment situation, medical co-morbidity, and socioeconomic status. Substance use history included questions on use of multiple substances including injectable drug use, past quit attempt, history of drug peddling, and duration since OAT enrollment. The questionnaires were reviewed and amended as part of the pretesting process.

Mini International Neuropsychiatric Interview (M.I.N.I.) for DSM-5

Lifetime mental disorders were assessed using translated and adapted version of the Mini International Neuropsychiatric Interview (M.I.N.I.) for DSM-5 7.0.2, which is an internationally validated diagnostic tool for assessing mental disorders (Sheehan et al., 1998). The Nepali translated version of M.I.N.I. consisted of a total of 16 modules (Dhimal et al., 2022). For this study common mental disorders including anxiety disorder, depressive disorder, psychotic disorder, and antisocial disorder were examined. The lifetime observation of panic disorder, agoraphobia, social anxiety disorder and generalized anxiety disorder were combined and re-categorized together as lifetime anxiety disorder. All common mental disorders examined were evaluated in ‘lifetime’ diagnostic time frame except alcohol use disorder which was based on a timeframe of 1 year (past 12 months).

Internalized Stigma of Mental Illness Inventory (ISMI)

Internalized stigma was assessed through Internalized Stigma of Mental Illness inventory (ISMI). The ISMI examines internalized stigma against people with mental illnesses. It has 29 items distributed across five subscales: "Alienation," which has six items, "Stereotype Endorsement," which has seven, "Discrimination Experience," which has five, "Social Withdrawal," which has six items, and "Stigma Resistance," which has five items. From "strongly agree" to "strongly disagree," all items are rated on a 4-point Likert scale (4 = strongly agree to 1 = strongly disagree) and it is a self-report questionnaire (Ritsher & Phelan, 2004). ISMI can be interpreted in four category method (Lysaker et al., 2007), and two category method (Ritsher & Phelan, 2004). According to four category method, mean total stigma score are divided as minimal to no internalized stigma (1.00–2.00), mild (2.01–2.50), moderate (2.51–3.00) and severe (3.01–4.00) internalized stigma. In the two/ binary category method, the first two and later two categories of the four category methods are combined respectively and scores from 1.00 to 2.50 categorized as ‘high internalized stigma not reported’ and scores from 2.51 to 4.00 as ‘high internalized stigma reported’. ISMI-29 item tool has been translated, pre-tested and adapted in Nepali language by mental health professionals with an internal consistency (Cronbach’s alpha) of 0.87 (Dhungana et al., 2022; Shrestha, 2019).

World Health Organization Quality of Life -BREF

World Health Organization Quality of Life (WHOQOL-BREF) questionnaire has 26 items evaluating quality of life (QoL) based on physical health (7 items), psychological wellbeing (6 items), social relationship (3 items) and environmental domain (8 items) (Kim, 2014). A Likert scale with five points is used to rate each item in a positive direction where higher scores denote higher QoL. The WHOQOL-BREF has been translated into Nepali and utilized in research previously (Giri et al., 2013).

Data Analysis

Statistical software for data science (STATA) version 17 was used for statistical analyses (StataCorp, 2021). The descriptive results are presented in the form of mean, standard deviation for continuous variables and frequency, and percentage for categorical variables. The normal distribution of the continuous variables was checked by using histograms, assessment of skewness and kurtosis and Kolmogorov–Smirnov test (Kim, 2013). The difference in mean was measured using independent t tests.

Those reporting high internalized stigma was used as a dependent variable. For inferential statistics, chi-square test was used for examination of bivariate association between categorical variables followed by multivariate logistic regression in the final models. Variables found significant in the bivariate analyses with a p value < 0.25, were first checked for confounding and those with variation inflation factor less than 2 were entered in the final models to test our hypotheses. Hosmer and Lemeshow test were used to determine the goodness of fit of the final logistic regression model. Additionally, Spearman rank correlation was done to study correlation between subscales of internalized stigma and domains of QoL. Statistical significance was considered at p value < 0.05 and 95% confidence interval (CI).

Results

About one in nine (92.2%) service users was male, and the mean age of the participants was 33.80 ± 7.30. The details of the socio-demographic characteristics of the OAT service users in this study is available in previously published papers (Pant et al., 2022; Pant et al., 2023a, b).

All 29 items of ISMI scale had a mean score greater than 2.5. The lowest mean score was observed for two items of stereotype endorsement. The mean score in item 6 “Mentally ill people shouldn’t get married.” was 2.52 ± 1.10 and item 23 “I can’t contribute anything to society because I have a mental illness.” was 2.52 ± 1.03. In contrary the highest mean score was for Item 16 “I am disappointed in myself for having a mental illness.” with a score of 3.01 ± 0.86) which is an item representing stigma alienation. (The details of all 29 items are mentioned in the Supplementary Table 1).

All the internalized stigma subscales had a mean score greater than 2.5 indicating high internalized stigma. The mean score of total internalized stigma was 2.71 ± 0.64, where stigma alienation score had the highest mean of 2.83 ± 0.64 and stigma resistance score had the lowest mean of 2.64 ± 0.72. (Table 1).

Table 1 Mean and standard deviations (SD) of total stigma and 5 subscales of ISMI
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The highest frequency (44.16%) was observed for severe internalized stigma and lowest frequency (14.72%) for minimal to no internalized stigma. (Table 2). High internalized stigma was not reported in 101 (43.72%) and reported in 130 (56.28%) based on ‘two category method’ which combines the first two and last two categories of the ‘four category method’.

Table 2 Level of internalized stigma among OAT service users
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Table 3 reveals that all the domains of QoL along with the total QoL score had significantly lower mean scores among those reporting higher internalized stigma in comparison to those not reporting. It depicts that OAT service users with high internalized stigma had lower QoL in comparison to those not reporting internalized stigma.

Table 3 Comparison of mean (SD) QoL scores among those not reporting vs reporting high internalized stigma
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As seen in Table 4, medical co-morbidity, lifetime anxiety disorder, lifetime depressive disorder and alcohol use disorder in the past year showed significant association with those reporting high internalized stigma. The history of multiple substance use was associated with those reporting high internalized stigma before adjustment in the bivariate model. Those having lifetime depressive disorder were more than five times more likely to have reported high internalized stigma. Likewise, service users with alcohol use disorder and lifetime anxiety disorder were around four times and those with medical co-morbidity were twice as likely to have high internalized stigma than those who did not. (Table 4). The mean ISMI score (including all subscales of internalized stigma) of OAT service users correlated negatively with all domains of QoL. (Supplementary Table 2).

Table 4 Factors associated with service users reporting high internalized stigma
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Discussion

This study evaluated internalized stigma among OAT service users where more than half of the participants reported high internalized stigma. The overall prevalence of internalized stigma is consistent with previous studies (Can & Tanriverdi, 2015; Chang et al., 2019; Ghosh et al., 2022; Kulesza et al., 2017; Sarkar et al., 2017; Shrestha, 2019). However, more evidence is required to better understand internalized stigma in resource poor settings such as Nepal, particularly qualitative studies, and to develop culturally appropriate and effective interventions.

The highest mean score for "stigma alienation" among all stigma categories is a significant finding of our study. The Internalized Stigma scale's alienation domain shows the most often reported stigmatized experiences (Akdağ et al., 2018; Ghosh et al., 2022; Kulesza et al., 2017). Poverty, social exclusion, denial of access to services, lack of family support, structural issues, and discrimination, for example, have a role in this. There is a limited number of studies in resource poor settings aimed at untangling the complex cultural, legal, social, personal and economic contexts within which such stigma is initiated, escalates and is maintained.

Many people with opioid use disorder (OUD) encounter stigma associated with receiving OAT. The stigma surrounding drug use and its treatment can be a substantial barrier (Hadland et al., 2018). People with substance use disorder are less likely to seek treatment and are also more prone to alienate themselves from society. The external stigma that can result from receiving OAT combined with resultant internalized stigma may make recovery and reintegration problematic.

Our observations make it evident that those who report experiencing more internalized stigma have lower QoL. Despite the fact that the OAT program is evidence-based and offers psychosocial support, these results support prior studies exploring the connection between self-stigma and QoL, as self-stigma strongly impacted all QoL domains (Ghosh et al., 2022; Ivkovic & Wakeman, 2018; Sarkar et al., 2017).

It is not surprising that people who have mental disorders exhibit higher levels of internalized stigma. Depression and anxiety symptoms are common in OUD patients and positively correlated with internalized stigma (Akdağ et al., 2018; Brown et al., 2015; Chang et al., 2016; Cheng et al., 2019; Drapalski et al., 2013). The double burden of stigma, stigma associated with drug use on the one hand and stigma associated with mental disorder on the other, has a negative impact on QoL. In this study, significant levels of internalized stigma were more prevalent in participants with lifetime depression and anxiety disorders. Our findings highlight the complexity of internalized stigma and medical and psychiatric co-morbidity in patients with opioid dependence and mental illness.

Poor socioeconomic conditions are known to be associated with stigma and exclusion, and may exacerbate problems associated with substance use (Room, 2005). Given the reported impacts of socio-demographic factors on internalized stigma among OAT users, we were surprised that some socio-demographic factors in our study including socio-economic conditions were not significantly associated with high internalized stigma. This finding, similar to some previous studies (Brown et al., 2015; Ghosh et al., 2022) could be a result of the participants being better educated than those on other studies and living in the urban capital. However, higher stigma scores were associated with lower educational status and higher proportions of income spent on substances in the study conducted in India (Gupta et al., 2019). Further research in resource poor settings might include greater emphasis on including qualitative methodologies.

Implications

The significant impacts of internalized stigma found in this study are consistent with a growing body of research (Volkow, 2020). Initiating, exacerbating, and reinforcing stigma and discrimination are attitudes and beliefs, influenced by stereotypes, misinformation, ‘moralism’, positing ‘abstinence’ as the goal. Not limited to resource poor settings, there is a need to review existing guidelines for addressing stigma and discrimination towards people who use drugs, including OAT service users.

Review of content in medical and allied health programs, journalism and media courses is necessary, as are attempts to influence how people who use drugs are portrayed in print, on screen, stage and in social media, and how language matters as it can increase or help reduce stigma (Thornicroft et al., 2022). Strengthened evidence-informed information focused on the complexity of substance use, the common comorbidities including physical and mental disorders, and increasing opportunities to support rehabilitation and reintegration including access to education, employment, and secure housing, can challenge existing stigma and enhance change (NIDA, 2018).

Strategies at the individual level that have been found effective in addressing stigma associated with mental disorders and HIV, such as psychoeducation, acceptance-based treatment, non-stigmatising language, and empowerment enhancement may assist reducing OAT participants internalised stigma, especially as the three areas have a significant overlap (Cheetham et al., 2022; Fox, 2018; Ghosh et al., 2022; Thornicroft et al., 2022). Tackling broader media and community stigma that contributes to internalised stigma is a challenge, OAT providers can avail themselves of all opportunities to address and educate the community, media, and politicians about the impacts of stigmatising language, stereotypes and misinformation (Thornicroft et al., 2022).

Limitation

Certain limitations should be considered when interpreting the results of this study. Participant recruitment may have been influenced by sample bias because OAT sites in the Kathmandu valley were used, which is the capital of Nepal, and stigma can possibly be more prominent in rural and less developed areas. Moreover, the external validity of the results may be constrained due to the homogeneous small sample and the limited study sites, which restricts the generalizability of the findings. All of Nepal's OAT service providers including other drug treatment rehabilitation centers should be included in future studies, along with a larger representative sample, and greater female participation. While the strength of causal inference is restricted by the cross-sectional study design, this study brings to light the burden of internalized stigma among OAT service users which is known to affect treatment outcome, retention, and achievement of OAT goals including minimization of stigma and its impacts.

Conclusion

More than one in two OAT service users in this study reported high internalized stigma, and high internalized stigma was associated with a lower QoL. Medical co-morbidity, lifetime anxiety, depressive and alcohol use disorders showed significant association with those reporting high internalized stigma. Despite being in an evidence-informed OAT program with standard operating procedures, psychosocial assistance and staff supervision, stigma can remain or even intensify unless there is continued and routine surveillance and reflection on programme procedures, protocols, use of language and encouragement of overt and anonymous participant feedback and critique.