Although stigma is considered a major barrier to effective responses to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of AIDS programme priorities. The complexity of HIV/AIDS-related stigma is often cited as a primary reason for the limited response to this pervasive ph

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Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward.

We illustrate testing measurement invariance in a second-order factor model using a quality of life dataset (n = 924). Measurement invariance was tested across 2 groups at a set of hierarchically structured levels: (a) configural invariance, (b) first-order factor loadings, (c) second-order factor loadings, (d) intercepts of measured variables, (e) intercepts of first-order factors, (f) disturbances of first-order factors, and (g) residual variances of observed variables. Given that measurement invariance at the factor loading and intercept levels was achieved, the latent factor mean difference on the higher order factor between the groups was also estimated. The analyses were performed on the mean and covariance structures within the framework of the confirmatory factor analysis using the LISREL 8.51 program. Implications of second-order factor models and measurement invariance in psychological research were discussed.

Teacher's Corner: Testing Measurement Invariance of Second-Order Factor Models

Recent analyses suggest that lack of clarity in the conceptualization and measurement of HIV stigma at an individual level is a significant barrier to HIV prevention and treatment efforts. In order to address this concern, we articulate a new framework designed to aid in clarifying the conceptualization and measurement of HIV stigma among individuals. The HIV Stigma Framework explores how the stigma of HIV elicits a series of stigma mechanisms, which in turn lead to deleterious outcomes for HIV uninfected and infected people. We then apply this framework to review measures developed to gauge the effect of HIV stigma since the beginning of the epidemic. Finally, we emphasize the utility of using three questions to guide future HIV stigma research: who is affected by, how are they affected by, and what are the outcomes of HIV stigma?

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From Conceptualizing to Measuring HIV Stigma: A Review of HIV Stigma Mechanism Measures

Introduction: Adherence to HIV antiretroviral therapy (ART) is a critical determinant of HIV-1 RNA viral suppression and health outcomes. It is generally accepted that HIV-related stigma is correlated with factors that may undermine ART adherence, but its relationship with ART adherence itself is not well established. We therefore undertook this review to systematically assess the relationship between HIV-related stigma and ART adherence. Methods: We searched nine electronic databases for published and unpublished literature, with no language restrictions. First we screened the titles and abstracts for studies that potentially contained data on ARTadherence.Then we reviewed the full text of these studies to identify articles that reported data on the relationship between ARTadherence and either HIV-related stigma or serostatus disclosure. We used the method of meta-synthesis to summarize the findings from the qualitative studies. Results: Our search protocol yielded 14,854 initial records. After eliminating duplicates and screening the titles and abstracts, we retrieved the full text of 960 journal articles, dissertations and unpublished conference abstracts for review. We included 75 studies conducted among 26,715 HIV-positive persons living in 32 countries worldwide, with less representation of work from Eastern Europe and Central Asia. Among the 34 qualitative studies, our meta-synthesis identified five distinct third-order labels through an inductive process that we categorized as themes and organized in a conceptual model spanning intrapersonal, interpersonal and structural levels. HIV-related stigma undermined ART adherence by compromising general psychological processes, such as adaptive coping and social support.We also identified psychological processes specific to HIV-positive persons driven by predominant stigmatizing attitudes and which undermined adherence, such as internalized stigma and concealment. Adaptive coping and social support were critical determinants of participants' ability to overcome the structural and economic barriers associated with poverty in order to successfully adhere to ART. Among the 41 quantitative studies, 24 of 33 cross-sectional studies (71%) reported a positive finding between HIV stigma and ART non-adherence, while 6 of 7 longitudinal studies (86%) reported a null finding (Pearson's x 2 7.7; p0.005). Conclusions: We found that HIV-related stigma compromised participants' abilities to successfully adhere to ART. Interventions to reduce stigma should target multiple levels of influence (intrapersonal, interpersonal and structural) in order to have maximum effectiveness on improving ART adherence.

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Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis

Introduction : HIV-related stigma and discrimination continue to hamper efforts to prevent new infections and engage people in HIV treatment, care and support programmes. The identification of effective interventions to reduce stigma and discrimination that can be integrated into national responses is crucial to the success of the global AIDS response. Methods : We conducted a systematic review of studies and reports that assessed the effectiveness of interventions to reduce HIV stigma and discrimination between 1 January 2002 and 1 March 2013. Databases searched for peer-reviewed articles included PubMed, Scopus, EBSCO Host -CINAHL Plus, Psycinfo, Ovid, Sociofile and Popline. Reports were obtained from the www.HIVAIDSClearinghouse.eu , USAID Development Experience Clearinghouse, UNESCO HIV and AIDS Education Clearinghouse, Google, WHO and UNAIDS. Ancestry searches for articles included in the systematic review were also conducted. Studies of any design that sought to reduce stigma as a primary or secondary objective and included pre- and post-intervention measures of stigma were included. Results : Of 2368 peer-reviewed articles and reports identified, 48 were included in our review representing 14 different target populations in 28 countries. The majority of interventions utilized two or more strategies to reduce stigma and discrimination, and ten included structural or biomedical components. However, most interventions targeted a single socio-ecological level and a single domain of stigma. Outcome measures lacked uniformity and validity, making both interpretation and comparison of study results difficult. While the majority of studies were effective at reducing the aspects of stigma they measured, none assessed the influence of stigma or discrimination reduction on HIV-related health outcomes. Conclusions : Our review revealed considerable progress in the stigma-reduction field. However, critical challenges and gaps remain which are impeding the identification of effective stigma-reduction strategies that can be implemented by national governments on a larger scale. The development, validation, and consistent use of globally relevant scales of stigma and discrimination are a critical next step for advancing the field of research in this area. Studies comparing the effectiveness of different stigma-reduction strategies and studies assessing the influence of stigma reduction on key behavioural and biomedical outcomes are also needed to maximize biomedical prevention efforts. Keywords : systematic review; HIV; stigma reduction; discrimination reduction; interventions; measurement. (Published: 13 November 2013) To access the supplementary material to this article please see Supplementary Files in the column to the right (under Article Tools). Citation : Stangl AL et al. Journal of the International AIDS Society 2013, 16 (Suppl 2):18734 http://www.jiasociety.org/index.php/jias/article/view/18734 | http://dx.doi.org/10.7448/IAS.16.3.18734

https://onlinelibrary.wiley.com/doi/pdf/10.7448/IAS.16.3.18734

A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come?

An instrument to measure the stigma perceived by people with HIV was developed based on the literature on stigma and psychosocial aspects of having HIV. Items surviving two rounds of content review were assembled in a booklet and distributed through HIV-related organizations across the United States. Psychometric analysis was performed on 318 questionnaires returned by people with HIV (19% women, 21% African American, 8% Hispanic). Four factors emerged from exploratory factor analysis: personalized stigma, disclosure concerns, negative self-image, and concern with public attitudes toward people with HIV. Extraction of one higher-order factor provided evidence of a single overall construct. Construct validity also was supported by relationships with related constructs: self-esteem, depression, social support, and social conflict. Coefficient alphas between .90 and .93 for the subscales and .96 for the 40-item instrument provided evidence of internal consistency reliability. The HIV Stigma Scale was reliable and valid with a large, diverse sample of people with HIV.

Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale

The perceived stigma inherent in progressive neurological diseases, such as Alzheimer's dementia (AD) and Parkinson's Disease (PD), has been under-recognized. The purposes of this pilot study were to examine: (1) the psychometric properties of the Stigma Impact (SIS) and Stigma Experience Scales (SES) when used with persons with AD or PD; and (2) differences in perceived stigma by disease diagnosis. The sample included 26 persons with AD and 14 persons with PD. Findings support the reliability of the total SIS scale for both persons with AD or PD. The four SIS subscales had acceptable reliability when used with persons with PD, while two of the four subscales had adequate reliability when used with persons with AD. Internal consistency reliability of the SES was acceptable in PD sample only. Validity of the total SIS scale and the four subscales was supported through significant correlations with mental status (AD sample only), self-esteem, depression, and personal control. Persons with AD scored higher o...

Measuring perceived stigma in persons with progressive neurological disease Alzheimer's dementia and Parkinson's disease

People with chronic obstructive pulmonary disease (COPD) can experience severe dyspnea, tenacious secretions, and a disruptive cough. They often struggle with daily activities and over time tend to decrease the amount of time they spend outside the home. The functional decline accompanying these changes is not adequately explained by physical changes alone. This descriptive, qualitative study describes social changes and experiences of stigma from the perspective of people with moderate to severe COPD. A total of 16 participants (11 men, 5 women) participated in individual interviews regarding effects of COPD on social relationships and experiences with COPD-related stigma. Participants were aware of the potential for stigma related to COPD. Emerging themes included the prevalence of blame related to smoking, both from others, including health care providers, and from themselves. Although many decreases in social activities appear to be pragmatic adaptations to functional limitations, these decisions may also be attempts to avoid potentially stigmatizing situations.

The Experience of Stigma in Chronic Obstructive Pulmonary Disease

Symptoms of narcolepsy tend to arise during adolescence or young adulthood, a formative time in human development during which people are usually completing their education and launching a career. Little is known about the impact of narcolepsy on the social aspects of health-related quality of life in young adults. The purpose of this study was to examine relationships between health-related stigma, mood (anxiety and depression) and daytime functioning in young adults with narcolepsy compared to those without narcolepsy. Young adults (age 18–35) with narcolepsy (N = 122) and without narcolepsy (N = 93) were mailed a packet that included questionnaires and a self-addressed postage paid envelope. The questionnaire included demographic information and a composite of instruments including the SF 36, Functional Outcomes of Sleep Questionnaire (FOSQ), Fife Stigma Scale (FSS), Epworth Sleepiness Scale (ESS) and Hospital Anxiety and Depression Scale (HADS). Variable associations were assessed using descriptive statistics, ANOVA, Mann-Whitney U Test, correlations, stepwise multiple regression and path analysis. Young adults with narcolepsy perceived significantly more stigma and lower mood and health-related quality of life than young adults without narcolepsy (p<0.01). Health-related stigma was directly and indirectly associated with lower functioning through depressed mood. Fifty-two percent of the variance in functioning was explained by the final model in the young adults with narcolepsy. Health-related stigma in young adults with narcolepsy is at a level consistent with other chronic medical illnesses. Health-related stigma may be an important determinant of functioning in young adults with narcolepsy. Future work is indicated toward further characterizing stigma and developing interventions that address various domains of stigma in people with narcolepsy.

https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0122478&type=printable

Health-related stigma as a determinant of functioning in young adults with narcolepsy

Objectives: African American urban adolescents are one of the fastest growing groups of children affected by their mother’s HIV status. These children experience HIV stigma by association with thei...

Barbara Berger

Papers

Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale

Measuring perceived stigma in persons with progressive neurological disease Alzheimer's dementia and Parkinson's disease

The Experience of Stigma in Chronic Obstructive Pulmonary Disease

Health-related stigma as a determinant of functioning in young adults with narcolepsy

Developing a Measure of Stigma-by-Association with African-American Adolescents whose Mothers have HIV