Frameworks and measures for HIV‐related internalized stigma, stigma and discrimination in healthcare and in laws and policies: a systematic review

Abstract

Introduction There is strong global commitment to eliminate HIV‐related stigma, and work in this area continues to evolve. Wide variation exists in frameworks and measures used. Methods Building on the existing knowledge syntheses, we carried out a systematic review to identify frameworks and measures aiming to understand or assess internalized stigma, stigma and discrimination in healthcare, and in law and policy. The review addressed two questions: Which conceptual frameworks have been proposed to assess internalized stigma, stigma and discrimination experienced in healthcare settings, and stigma and discrimination entrenched in national laws and policies? Which measures of these different types of stigma and discrimination have been proposed and what are their descriptive properties? Searches, completed on 6 May 2021, cover publications from 2008 onwards. The review is registered in PROSPERO (CRD42021249348), the protocol incorporated stakeholder input, and the data are available in the Systematic Review Data Repository. Results and discussion Sixty‐nine frameworks and 50 measures met the inclusion criteria. Critical appraisal figures and detailed evidence tables summarize these resources. We established a compendium of frameworks and a catalogue of measures of HIV‐related stigma and discrimination. Seventeen frameworks and 10 measures addressed at least two of our focus domains, with least attention to stigma and discrimination in law and policy. The lack of common definitions and variability in scope and structure of HIV‐related frameworks and measures creates challenges in understanding what is being addressed and measured, both in relation to stigma and efforts to mitigate or reduce its harmful effects. Having comparable data is essential for tracking change over time within and between interventions. Conclusions This systematic review provides an evidence base of current understandings of HIV‐related stigma and discrimination and how further conceptual clarification and increased adaptation of existing tools might help overcome challenges across the HIV care continuum. With people living with HIV at the centre, experts from different stakeholder groups could usefully collaborate to guide a more streamlined approach for the field. This can help to achieve global targets and understand, measure and help mitigate the impact of different types of HIV‐related stigma on people's health and quality of life.

Public health services and intersectional stigma: a social sciences perspective with implications for HIV service design and delivery

“…The same systematic review by Ferguson et al . [56] found that there was a dearth of measures capturing stigma and discrimination within healthcare settings, as well as in laws and policies, and call for greater attention to the measurement of stigma beyond the individual level. In addition to the lack of measures around structural forms of stigma, there is also a lack of measures around intersectional stigma and discrimination [59].…”

“…A systematic review by Ferguson et al . [56] found that there was a lack of common definitions of HIV internalized stigma in healthcare settings, laws and policies. Furthermore, a systematic review and meta-analysis of stigma-reduction interventions in the United States for GBMSM by Gunn et al .…”

The Thai Internalized HIV-related Stigma Scale

“…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 ).…”

Age and Mental Health Symptoms Among Chinese Persons With HIV: The Mediating and Moderating Role of Perceived Discrimination

“…The negative stereotypes about PWH, such as being “dirty” and “immoral”, may lead to PWH's feelings of discrimination, isolation from, and being inferior to others (Rueda et al, 2016; Sowell, 2018). Stigma is considered an attitude or belief, whereas discrimination is seen as the behavior that sources those attitudes or beliefs (Ferguson et al, 2022). Perceived discrimination is the awareness or expectation that someone feels they are inferior to other people due to their particular attributes (Fitzgerald-Husek et al, 2017).…”