HIV-related stigma refers to negative opinions of the illness and has been acknowledged as a potential issue ever since the beginning of the HIV epidemic (Stapleton, 1986; Elford, 1987). It is a significant issue for people living with HIV. HIV-related stigma restricts access to healthcare, which affects HIV treatment adherence (Katz et al., 2013; Sweeney and Vanable, 2016; Christopoulos et al., 2019; Camacho et al., 2020; Pearson et al., 2021). International organizations such as UNAIDS see HIV-related stigma as a significant barrier to putting an end to the HIV epidemic. Prevention of stigma and discrimination was recognized as a significant component of societal enablers which is essential to achieve the UNAIDS 2025 targets according to the latest modeling (Stover et al., 2021). Therefore, the alleviation of HIV-related stigma has been advocated for inclusion in national HIV programs (Grossman and Stangl, 2013).

Stigma associated with HIV can be categorized in a variety of ways. Earnshaw & Chaudoir classified HIV-related stigma as enacted (actual experience with prejudice or discrimination due to HIV), anticipated (the extent to which people living with HIV fear they will be discriminated as a result of having HIV), and internalized (endorsement of negative feelings and beliefs about HIV) (Earnshaw and Chaudoir, 2009). Each form of HIV-related stigma has distinct meanings and effects on people living with HIV health and quality of life.

Researching internalized HIV-related stigma (IHS) and developing interventions to lessen it is beneficial for a number of reasons. Unlike other types of stigma, IHS may be applicable to every people living with HIV. Some people living with HIV may not have revealed their HIV status, in which case they would worry less about enacted or anticipated stigma. For IHS, people living with HIV can also resolve the issue on their own without the need of assistance from others. IHS has also been linked to a number of adverse outcomes in people living with HIV. In a meta-analysis, it was found that IHS was associated with less social support, lower levels of access to and use of health and social services, greater rates of depression, and lower levels of adherence to antiretroviral drug regimens (Rueda et al., 2016). Poor medical adherence may also be explained by suboptimal people living with HIV care retention, which was partly driven on by IHS (Christopoulos et al., 2019; Pearson et al., 2021).

Researchers have tried to understand why IHS and poor health outcomes are related. Possible explanations include increased susceptibility to mental health issues, decreased self-efficacy, and worries about unintentional HIV status disclosure (Sweeney and Vanable, 2016). A meta-analysis also found that the causes of the linkage between IHS and unsatisfactory ART adherence were impairments of key psychological processes such as social support and adaptive coping (Katz et al., 2013). On the other hand, IHS could be exacerbated by unfavorable HIV-related health conditions. Poor health was identified to be a predictor of increased IHS in three cohort studies. In two longitudinal studies, lower depression scores and improvements in general mental health predicted reductions in IHS (Pantelic et al., 2015).

Several IHS measurement tools have been developed and are now available for use by researchers and public health personnel (Berger et al., 2001; Sayles et al., 2008; Kalichman et al., 2009; Phillips et al., 2011; Li et al., 2016; Ferguson et al., 2022). Some of the widely used scales are Berger’s HIV Stigma Scale (Berger et al., 2001), Kalichman’s Internalized AIDS-related Stigma Scale (Kalichman et al., 2009), and Sayles’ Internalized Stigma Scale (Sayles et al., 2008). Each nation has unique sociocultural contexts that may influence how people perceive internalized stigma. For Thailand, these include a strong sense of family connectedness and Theravada Buddhist principles. Due to the issue’s cultural specificity, a localized IHS scale is required in order to measure the problem accurately. Such a tool has not yet been created for Thailand and other Asian nations with comparable sociocultural circumstances.

Due to a major pandemic in the past and successful antiretroviral program, Thailand has the highest adult HIV prevalence in Southeast Asia, at 1.0% (UNAIDS, 2023c). Myanmar and Cambodia came in second and third, with 0.8% (UNAIDS, 2023b) and 0.6% (UNAIDS, 2023a), respectively. It is estimated that 440,000 people are now living with HIV in the country (MoP Health, 2023). Thailand has achieved several accomplishments in the past 10 years toward reducing HIV-related stigma. Among these were the development of standardized measurement tools and regular data collecting and reporting systems to track HIV-related stigma situations in health settings (Srithanaviboonchai et al., 2017). The country also created a training program to lessen HIV-related stigma in hospital settings as well as an IHS reduction program, both of which have been scaling up nationally (Srithanaviboonchai et al., 2017; Siraprapasiri et al., 2020).

There are little data available on the extent of internalized HIV stigma in Thailand. In a recent publication, 400 people living with HIV/AIDS in Bangkok and Chiang Mai had an overall internalized stigma score of 71 out of 100 (Thapinta et al., 2022). Internalized HIV stigma is a widely acknowledged issue, and Thailand should be no exception. Thai people living with HIV were also found to have significant rates of depression, which is associated with internalized stigma (Aurpibul et al., 2022). There is still a need for a standardized measurement of IHS given that it is essential for Thailand to be able to monitor this phenomenon at the individual, institutional, and country level.

The objective of this study was to develop a standardized measurement for IHS among Thai people living with HIV. This tool will be employed in both the evaluation of the ongoing IHS reduction program and the national HIV-related HIV stigma monitoring. This newly created measurement tool should also be beneficial to neighboring nations with comparable sociocultural contexts to Thailand, like Myanmar, Laos, and Cambodia.

The study was divided into two stages. For stage 1, the questionnaire items were developed based on the findings of in-depth interviews and pilot testing the original list of items and other instruments to be used in stage 2. For stage 2, the questionnaire items were validated in accordance with their psychometric characteristics.

In this study, we developed and validated a tool to measure IHS specifically for Thai people living with HIV. IHS, a kind of HIV-related stigma, is a significant problem for people living with HIV. The study used a qualitative study to raise a comprehensive list of items relevant to the Thai context. A cross-sectional study was conducted to validate the items’ psychometric properties and select appropriate items. The final product includes the Thai HIV-IHSS, which has 22 items, and the Thai HIV-IHSS brief, which has 8 elements. The two measures can be separated into four components, namely “negative thoughts toward self,” “effects of negative thoughts toward self,” “effects of negative thought toward family and access to health care services,” and “anticipated negative thoughts.”

The Thai-IHSS, the major outcome of the study, is a multidimensional measurement of IHS in people living with HIV. It can be classified into four scales based on the findings of the factor analysis. The advantage is that it allows the user the choice to view the outcomes individually for each component or collectively. The majority of the IHS scales for people living with HIV that are currently available lack this feature. The Sayles’ Internalized Stigma Scale (Sayles et al., 2008), a well-known IHS scale with this property, contains four components as well. However, the subscales of this measurement are different from ours namely “Stereotype,” “Disclosure concerns,” “Social relationships,” and “Self-acceptance.” Another IHS which has subscales is from China (Li et al., 2016). It comprises two subscales, “Being refused” and “Guilt.”

Three items on effects of negative thoughts toward family have emerged and are included in the Thai-IHSS. The relatively high number emphasizes how significant family ties are to Thai culture. We found the items related to family ties in only one other IHS scale. The 2 items are “I feel abandoned by family members because I have HIV” and “My family is comfortable talking about my HIV” in Sayles’ Internalized Stigma Scale (Sayles et al., 2008).

Among the measurement items that were chosen to be included in the Thai-IHSS and the Thai-IHSS brief, one item in particular stood out from the rest and is worth mentioning. It reads “I think that I am HIV-infected because of my bad karma.” The majority of Thais believe in karma, a Hindu and Buddhist concept which states that one’s actions influence the likelihood of future good and bad outcomes. According to this idea, the causal relationship between actions and results is vague or occurs across lengthy durations in the cycle of reincarnation (Larson, 2020). The only IHS measurement item in other scales which is related to the karma concept was found in the IHS scale from China (Li et al., 2016). It reads “I must have done something wrong to deserve getting HIV.” However, this is not specific for the curse from the past lives. It can refer to just the bad behaviors in this present lives. Having this item in the scales made them distinctive for the people living with HIV in Thailand and the neighboring nations who share the same belief. According to a recent study in Myanmar, the majority of people living with HIV participants believed that their HIV infection was caused by their past karma (Aung et al., 2022). Similar to Thailand, in Myanmar, the majority of people are Buddhist. The inclusion of this item in the measures has some potential benefits. The caregivers can remind people living with HIV who hold this idea that they can place the blame for having HIV on actions in a past life rather than their current one. It is worthwhile to investigate whether this could be effectively applied in the internalized stigma reduction intervention.

A number of IHS-specific interventions have been developed. In the US, a comprehensive strategy helped reduce ISH for those newly entering HIV care (Yigit et al., 2020). A study with women living with HIV found that IHS may be reduced by cognitive behavioral treatment that addresses issues such as helplessness, guilt, and anger (Tshabalala and Visser, 2011). According to a recently published review, structural interventions, the prevention of drug stockouts, social empowerment, and wealth creation may help reduce ISH among people living with HIV (Pantelic et al., 2019). However, so far, no intervention has been demonstrated to lower IHS for Thai people living with HIV. The Thai-IHSS and the upcoming survey results from this measurement will be useful information in designing an intervention that is specifically targeted at ISH in Thai people living with HIV.

The Stigma Index is a global study carried out by networks of people living with HIV. It is an essential tool for assessing HIV-related stigma, as well as IHS in particular. Thailand has just concluded collecting data for the Stigma Index 2.0, the current version of the study. IHS was measured in this study using Kalichman’s Internalized AIDS-related Stigma Scale. The International Partnership who oversee this project did not allow modification of the questionnaire, so it was not possible to switch the measurement to the Thai-IHSS. However, the results of the Stigma Index 2.0 can be compared to those of other surveys that used the Thai-IHSS. This newly created scale will also be incorporated into the current Thai national surveillance on HIV-related stigma in the healthcare settings. We can track changes in internalized HIV stigma over time since the survey will be conducted every 2 years.

The fact that this study offers scales that are among the first ISH measuring tools to have been validated for use with Thai people living with HIV is one of its strengths. The primary list of items was also created using the perspectives of a wide range of people living with HIV, including general adults, people who used drugs, men who have sex with men, transgender women, and sex workers. For the Thai-IHSS, the user has the flexibility of examining the results for each component separately or collectively thanks to the four subscales. The measures are also available in both the complete version (Thai-IHSS) and the short version (Thai-IHSS brief), giving users options. However, our research does have certain limitations. Participants of the quantitative survey were conveniently recruited from government HIV clinics. The sample may not adequately represent the Thai people living with HIV who were the most stigmatized and may be biased toward those with favorable experiences in HIV clinics. The Thai-IHSS brief, while more convenient to use than the Thai-IHSS, has not yet been fully tested for its psychometric properties.

In conclusion, the current study provides a new set of standardized measurements for IHS, an important issue within the context of HIV-related stigma. The study’s findings indicate that the Thai-IHSS had good psychometric qualities. The Thai-IHSS brief, a simplified version of the measurement, is also offered as an alternative. The scales appear to be a reliable and valid tool to measure IHS among Thai people living with HIV and people living with HIV in other countries with similar sociocultural settings. The study’s findings might be valuable for future research and clinical assessment.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving human participants were reviewed and approved by the Human Experimentation Committee, Research Institute for Health Sciences, Chiang Mai University. The patients/participants provided their written informed consent to participate in this study.

PU and KS conceived the study. PU, SS, AT, RW, and KS collected the data. PU, AT, PS, and KS contributed to data analysis and interpretation. PU and KS drafted the manuscript. All authors contributed to the article and approved the submitted version of the manuscript.

This study was supported by internal Chiang Mai University Research Funds. The funder played no role in study design or interpretation.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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