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.

Keywords: human rights; key and vulnerable populations; law and policy; quality of life; stigma; structural drivers.

Figure 1

Critical appraisal summary: frameworks (n = 69). Source: Assesses whether the framework was published or endorsed by a relevant organization; Stakeholder involvement: Assesses whether the framework was established with relevant stakeholder input; Evidence based: Assesses whether the components of the frameworks were based on a systematic literature review or empirical data; Defined population: Assesses whether the population the framework is designed to address is clearly reported; Validity tested: Assesses whether the validity of the framework was assessed (e.g., goodness of fit to empirical data assessed, framework applied in different contexts). Low risk of bias: The potential source of bias is unlikely to distort the methodological quality of the measure; Unclear: There was insufficient detail reported to assess the potential source of bias; High risk of bias: There was evidence of bias.

Figure 2

Critical appraisal: summary measures (n = 50). Internal consistency: Assesses whether the internal consistency of the scale was reported and it was acceptable (e.g., Cronbach's alpha >0/70); Reliability (other): Assesses whether other measures of reliability were reported and results were acceptable (e.g., test‐retest reliability, rater agreement); Content validity: Assesses whether the content of the measure was assessed for validity and the results were acceptable (e.g., face validity rated, expert review); Structural validity: Assesses whether the structural validity of the measure was assessed and the results were acceptable (e.g., through factor analysis); Criterion validity: Assesses whether convergent or discriminant validity to external criteria or other measures was determined and the results were acceptable; Cross‐cultural validity: Assesses whether measures were taken to ensure cross‐cultural validity (e.g., translation and back‐translation of items; measure exists in multiple languages or was used in multiple geographic settings); Responsiveness: Assesses whether the measure demonstrated sensitivity to change (e.g., scores changed after an intervention as predicted); Interpretability: Assesses whether guidance is reported on the interpretation of scores (e.g., minimal clinical difference). Low risk of bias: The potential source of bias is unlikely to distort the methodological quality of the measure; Unclear: There was insufficient detail reported to assess the potential source of bias; High risk of bias: There was evidence of bias.