Building a conceptual framework to study the effect of ...

Accepted Manuscript Building a conceptual framework to study the effect of HIV stigma reduction intervention strategies on HIV test-uptake: A scoping review Subash Thapa, MA, MPH, Karin Hannes, PhD, Margaret Cargo, PhD, Anne Buve, PhD, Arja R. Aro, PhD, Catharina Mathei, PhD PII:

S1055-3290(17)30092-4

DOI:

10.1016/j.jana.2017.04.004

Reference:

JANA 906

To appear in:

Journal of the Association of Nurses in AIDS Care

Received Date: 13 December 2016 Accepted Date: 10 April 2017

Please cite this article as: Thapa S., Hannes K., Cargo M., Buve A., Aro A.R. & Mathei C., Building a conceptual framework to study the effect of HIV stigma reduction intervention strategies on HIV testuptake: A scoping review, Journal of the Association of Nurses in AIDS Care (2017), doi: 10.1016/ j.jana.2017.04.004. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

ACCEPTED MANUSCRIPT Building a conceptual framework to study the effect of HIV stigma reduction intervention strategies on HIV test-uptake: A scoping review

Subash Thapa, MA, MPH

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Karin Hannes, PhD Margaret Cargo, PhD Anne Buve, PhD

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Arja R. Aro, PhD

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Catharina Mathei, PhD

Subash Thapa*, MA, MPH, is a PhD student, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium, and Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium ([email protected]). Karin Hannes, PhD, is

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Professor, Centre for Sociological Research, Faculty of Social Sciences, University of Leuven, Leuven, Belgium. Margaret Cargo, PhD, is Professor, School of Population Health, University of South Australia, Adelaide, Australia. Anne Buve, PhD, is Professor,

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Department of Public Health, Institute of Tropical Medicine, Antwerp, Belgium. Arja R. Aro,

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PhD, is Professor, Unit of Health Promotion Research, Institute of Public Health, University of Southern Denmark, Esbjerg, Denmark. Catharina Mathei, PhD, is Professor, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.

*Corresponding author: Subash Thapa: [email protected]

Disclosures The authors declared no potential conflicts of interest with respect to the research, authorship,

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ACCEPTED MANUSCRIPT and/or publication of this article.

Acknowledgements The authors would like to acknowledge members of the Academic Center for General

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Practice, University of Leuven, Leuven, Belgium, for their invaluable comments.

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ACCEPTED MANUSCRIPT Abstract A scoping review of grey and peer-reviewed literature was conducted to develop a conceptual framework to illustrate mechanisms involved in reducing HIV stigma and increasing HIV test uptake. We followed a 3-step approach to exploring the literature:

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developing concepts, organizing and categorizing concepts, and synthesizing concepts into a framework. The framework contains 4 types of intervention strategies: awareness creation, influencing normative behavior, providing support, and developing regulatory laws. The

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awareness creation strategy generally improves knowledge and the influencing normative behavior strategy changes stigmatizing attitudes and behaviors, and subsequently, increases

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HIV test uptake. Providing support and development of regulatory law strategies changes actual stigmatizing behaviors of the people and, subsequently, increases HIV test uptake. The framework further outlines that the mechanisms described are influenced by the interaction of various social-contextual and individual factors. The framework sheds new light on the

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effects of HIV stigma reduction intervention strategies and HIV test uptake.

Key words: conceptual framework, HIV test uptake, HIV stigma, HIV stigma reduction

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intervention strategies, scoping review

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ACCEPTED MANUSCRIPT Building a conceptual framework to study the effect of HIV stigma reduction intervention strategies on HIV test-uptake: A scoping review Stigma is a social process, experienced or anticipated, characterized by exclusion, rejection, blame, or devaluation that results from experience, perception, or reasonable

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anticipation of an adverse social judgement about a person or group (Scambler, 2009). The Joint United Nations Program on HIV/AIDS (UNAIDS, 2003) defined HIV stigma as a

process of devaluation of people either living with or associated with HIV infection. People

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living with HIV (PLWH) have been stigmatized because the disease is generally perceived as dangerous, contagious, and associated with behaviors outside of social norms (Link &

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Phelan, 2001). HIV stigma may have serious consequences, such as loss of friendship and family ties, dismissal from school and occupation, and denial of health care. Moreover, HIV stigma is associated with lower uptake of HIV testing services that leads to higher transmission rates (Golub & Gamarel, 2013). Therefore, it is important for intervention

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strategies that reduce HIV stigma and increase HIV test uptake to be developed, implemented, and evaluated in terms of their efficacy and applicability. HIV stigma has been shown to affect multiple HIV-related health behaviors and

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outcomes (e.g., accessing treatment and testing services) in people living or associated with

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HIV and the general population (Hatzenbuehler, Phelan, & Link, 2013). In recent years, progress has been made in identifying the causes and consequences of HIV-related stigma and in developing guidelines for the implementation of stigma reduction interventions that target people living or associated with HIV as well as the general population (UNAIDS, 2003; 2012). Despite the fact that many of the HIV stigma reduction interventions that have been implemented have targeted the general population, only a few interventions targeting this group have been tested for effectiveness (Brown, Macintyre, & Trujillo, 2003; Mahajan et al., 2008; Parker & Aggleton, 2003; Stangl, Lloyd, Brady, Holland, & Baral, 2013).

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ACCEPTED MANUSCRIPT Moreover, these interventions have seldom been evaluated for increasing uptake of HIV testing services by the general population (International HIV/AIDS Alliance , 2011; UNAIDS, 2012). Systematic reviews synthesizing existing evidence on the effects of HIV stigma reduction intervention strategies on HIV test uptake have not yet been undertaken.

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Therefore, key gaps remain in the literature on HIV stigma reduction interventions as they influence HIV test uptake.

It is often difficult to review evidence on efficacy of interventions related to complex

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phenomena, such as HIV stigma (Patton, 2010). For example, an emerging number of

mechanisms that affect how HIV stigma reduction influences HIV test-uptake may require

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exploration. Building a conceptual framework or an evidence base that describes these mechanisms is of paramount importance to inform future reviews and guidelines on the topic. A conceptual framework not only increases understanding of contextual factors that may mediate or moderate intervention outcomes, it also guides future research projects and

Hunt, 2015).

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facilitates the development and implementation of robust interventions (Hudon, Gervais, &

The knowledge needed to develop a conceptual framework includes multiple types

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of evidence, including grey literature and methodologically diverse quantitative and

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qualitative research (Hudon at al., 2015). A scoping review of the literature is generally preferred when a topic has not yet been extensively reviewed, needs to synthesize multiple types of literature, or is of a complex or heterogeneous nature (Pham et al., 2014). The Canadian Institute of Health Research defined a scoping review as an exploratory research project that systematically maps the literature available on a topic, identifying key concepts, theories, sources of evidence, and gaps in the research (Heyvaert, Hannes, & Onghena, 2016). We conducted a scoping review to (a) identify and map the literature in the area of HIV stigma reduction related to HIV test uptake, and (b) develop a conceptual framework,

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ACCEPTED MANUSCRIPT which was meant to feed into a systematic review on the effectiveness of HIV stigma reduction interventions. Specifically, our scoping review was aimed at identifying: 1. HIV stigma reduction intervention strategies that have been implemented and tested in practice,

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2. potential mechanisms through which HIV stigma reduction intervention strategies influence HIV test uptake, and

strategies on HIV test uptake. Methods

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3. contextual factors that impact the effect of HIV stigma reduction intervention

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A scoping review was conducted, as a method suitable for synthesizing grey literature and methodologically diverse quantitative and qualitative research (Heyvaert et al., 2016). We used a purposeful sampling technique to select information-rich and methodologically diverse grey and peer-reviewed literature (Suri, 2011).

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Sampling and Key Word Search Strategy

The scoping review was primarily aimed at developing a preliminary conceptual framework that was meant to feed into a systematic review on the efficacy of HIV stigma

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reduction interventions. Therefore, we did not follow a systematic process but, based the

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review on purposeful sampling techniques to identify and select grey and peer-reviewed literature (see Figure 1).

We opted for a convenience sampling procedure to select program reports and

theoretical articles that provided specific information about the implementation of HIV stigma reduction programs and interventions, and conceptualized HIV stigma. The program reports and theoretical articles were found by searching with general topic-related key words (“HIV”, “social stigma”, “interventions”, “stigma reduction”) on Google Scholar and official websites of international organizations that have been responsible for developing and

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ACCEPTED MANUSCRIPT implementing programs and interventions to reduce HIV stigma, such as UNAIDS and the U.S. Agency for International Development (USAID). An intensity sampling procedure was used to select systematic reviews that discussed HIV stigma, the effectiveness of HIV stigma reduction interventions, or evaluations of the

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effectiveness of HIV stigma reduction interventions. Intensity sampling in a research

synthesis involves selecting studies that are excellent or rich examples of the phenomenon of interest (Suri, 2011). A free text search for the keywords “HIV”, “social stigma”,

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“interventions”, and “stigma reduction”, was performed in the PubMed database. The

methodological filter for systematic review was performed to select reviews on HIV stigma

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reduction.

Last, a disconfirming sampling strategy was used to identify and select peerreviewed articles that would help to identify, challenge, and refine the mechanisms involved in reducing HIV stigma and increasing HIV test uptake (Booth, Carroll, Ilott, Low, &

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Cooper, 2013). A free text search for the keywords “HIV”, “social stigma”, “interventions”, “stigma reduction”, and “HIV test-uptake” was performed in PubMed. Qualitative and quantitative research articles were selected based on the idea that quantitative articles would

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describe the effectiveness of HIV stigma reduction intervention strategies to increase HIV

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test-uptake and qualitative articles would lend greater insight into the mechanisms and factors involved (Heyvaert, Maes, & Onghena, 2013). Study Selection Criteria

We included the following types of literature in the review:

1. Program reports, policy documents, and theoretical articles that described HIV stigma or different stigma reduction interventions 2. Systematic review articles that described the effectiveness of HIV stigma reduction interventions

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ACCEPTED MANUSCRIPT 3. Empirical research articles that reported on a particular outcome of HIV test uptake and the impact of stigma on HIV test uptake. The selection of program reports and policy documents was based on the fact that most stigma reduction interventions have been conducted by international organizations, such

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as UNAIDS and USAID, and that those program reports would be valuable to guide the development of our framework. The theoretical articles were used to assist with

conceptualizing HIV stigma and how intervention strategies would lead to HIV stigma

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reduction. The systematic reviews were selected because they would help identify

intervention strategies and the ability of those strategies to produce outcomes. Peer-reviewed

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quantitative and qualitative research papers were selected to identify contextual variations related to the effect of HIV stigma reduction intervention strategies on HIV test uptake. Only the articles written in English were selected. No limitations were placed in terms of population, publication years, or geographical regions.

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Data Extraction

We developed categories to guide data extraction. Extracted data included information about intervention strategies to reduce HIV stigma and additional information

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that examined factors that influenced the process of stigma reduction and HIV test uptake.

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Based on those data extraction categories, we collected and sorted key pieces of information from selected articles. Following the argument from Pham et al. (2014) that quality appraisal was not a priority in scoping reviews or part of the scoping review method, we did not appraise the quality of articles included in this study. The process of searching, data extraction, data analysis, and development of the conceptual framework was iterative. One researcher (ST) conducted the search, review, and data extraction. The content of the literature that informed the development of the conceptual framework or clarified mechanisms involved in HIV stigma reduction and HIV test uptake

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ACCEPTED MANUSCRIPT was extracted. The data extraction and search process was stopped after it was discussed and other researchers (KH, CM, MC) agreed that the extracted data would be sufficient to develop the conceptual framework (Paterson, Thorne, Canam, & Jillings, 2001). Data Analysis and Synthesis

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Analysis of the data identified concepts and relationships between concepts and

organized them to develop the conceptual framework (Jabareen, 2009). First, we performed a careful and extensive reading of the included articles. We carefully looked across the

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different articles for common and recurring concepts. A concept generally described a

phenomenon or a group of phenomena from the literature (Savin-Baden & Major, 2013). We

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then organized and categorized the concepts to rule out contradictory concepts and to integrate similar concepts (Savin-Baden & Major, 2013).

Finally, we synthesized some of the similar concepts into a framework through an iterative and open process. These concepts were linked together to build a conceptual

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framework illustrating the mechanisms of the effect of stigma reduction intervention strategies on HIV test uptake. This process was repeated until a general consensus on the

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final conceptual framework was reached by review team members. Results

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Our review included 21 articles, including 3 program reports, 3 theoretical articles, 4 systematic reviews, and 11 original research articles (see Table 1). The following concepts were identified from the literature: awareness creation, behavior change, community organizing, community discussion, changing stigmatizing attitude, fear, health service access, improving knowledge, influencing normative behavior, regulatory laws, risk perception, stigma reduction, social trust, social interaction, social support, and providing support. Linking the concepts together, we developed a conceptual framework to illustrate the mechanisms of the effect of stigma reduction interventions strategies on HIV test uptake (see

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ACCEPTED MANUSCRIPT Figure 2). The first four boxes shown in the figure are the intervention strategies and the dashed arrows connecting the boxes represent potential mechanisms that these intervention strategies follow to reduce HIV stigma and increase HIV test-uptake. Each of the intervention

described below. HIV Stigma Reduction Intervention Strategies

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strategies, potential mechanisms, and contextual factors influencing the mechanisms are

Brown et al. (2003) classified several HIV stigma reduction interventions into four

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different strategies: information-based, coping skills, counseling, and contact with affected groups. The interventions, such as advertisements or lectures or presentations in a class, were

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categorized as information-based strategies. The interventions that provided people living or associated with HIV with relaxation and stress management skills through role play were categorized as coping skills strategy. Counseling strategy included interventions in which HIV-related information was provided and participants were allowed to have intimate

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discussions. The contact with affected group strategy included interventions that provided an opportunity for people to interact with or to visualize being PLWH. More recently, Stangl et al. (2013) added two more strategies: biomedical and

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structural strategies. The structural intervention strategy included interventions that removed,

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reduced, or altered structural factors that influenced the stigmatization process, such as laws that criminalized HIV or hospital or workplace policies that institutionalized discrimination of PLWH (Stangl et al., 2013). The biomedical intervention strategy included interventions related to health services utilization, such as availability of antiretroviral therapy, testing, and counseling services (Stangl et al., 2013). It is likely that, due to fear of potential discrimination, people may continuously avoid HIV testing services and may not disclose their HIV status (Cross, Heijnders, Dalal, Sermrittirong, & Mak, 2011). However, Brown et al. (2003) and Stangl et al. (2013) did not

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ACCEPTED MANUSCRIPT consider the negative association between HIV stigma and HIV test-uptake while incorporating interventions in their reviews. Therefore, to study the effect of HIV stigma reduction intervention strategies on HIV test uptake, we developed a new classification of intervention strategies based on insights from Brown et al. (2003), Stangl et al. (2013),

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Scambler, Heijnders, and van Brakel (2006), and Weiss (2008; see Table 2). The strategies are (a) awareness creation, (b) influencing normative behavior, (c) providing support, and (d) developing regulatory laws.

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Awareness creation. The awareness raising strategy contained interventions that included HIV-specific fact-based written or verbal information, communication, and

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education as major components. Examples of such interventions included peer education, indepth discussion, advertisement, information packs, or presentation/lecture in a class (Brown et al., 2003; Stangl et al., 2013). Awareness raising strategies were mostly targeted to the general population. Direct outcomes of this intervention strategy would be to increase

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knowledge, change attitudes, and change stigmatizing behavior. The indirect outcomes of this strategy would be to increase HIV test uptake.

Influencing normative behavior. Normative behavior strategies included interventions

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that would provide HIV-related services, and enhance community organizing and actions that

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would further influence behavior. Examples would be availability of treatment, testing, or counseling services; community organizing; community meeting; and developing platforms to discuss stigmatizing experiences (Stangl et al., 2013). This strategy would target the general population, would change stigmatizing attitudes and behaviors, and would subsequently increase HIV test uptake. Providing support. The support strategy included interventions that have provided support through teaching coping skills, counseling, and directly contacting people living close to HIV. Examples of these interventions were one-to-one counseling, empathy

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ACCEPTED MANUSCRIPT instruction, group counseling, support groups, training, nutrition support, contact, and group desensitization (Brown et al., 2003; Stangl et al., 2013). The support strategy targeted both the general population and people living close to HIV. A direct outcome of this intervention strategy would be to change stigmatizing behavior and a potential indirect outcome would be

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to increase HIV test uptake.

Developing regulatory laws. The regulatory law strategy included interventions that have incorporated HIV-specific legislation to protect and respect the human rights of PLWH

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and to supersede negative customary laws. We found that this strategy was incorporated mostly in structural interventions that aimed to remove, reduce, or alter factors that

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influenced the stigmatization process, such as laws that criminalized HIV, and hospital or workplace policies that institutionalized discrimination of PLWH (Stangl et al., 2013). Thus, this strategy targeted the general population, would change stigmatizing behaviors, and would increase HIV test uptake.

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Mechanisms of Stigma Reduction and HIV Test Uptake

The conceptual framework illustrates three potential mechanisms that the intervention strategies would follow to reduce HIV stigma and increase HIV test uptake. These

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mechanisms are (a) increasing the level of knowledge, (b) changing stigmatizing attitudes,

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and (c) changing stigmatizing behaviors. The awareness creation strategy may follow all three mechanisms to reduce HIV

stigma and increase HIV test uptake. An increased level of knowledge may change stigmatizing attitudes and subsequently change stigmatizing behaviors to reduce HIV stigma and increase HIV test uptake (Brown et al., 2003; Doherty et al., 2013; Stangl et al., 2013; Varas-Diaz et al., 2013). For example, Varas-Diaz et al. (2013) and Perry, Fishman, Jacobsberg, Young, and Frances (1991) reported that education interventions were successful in increasing knowledge, changing stigmatizing attitudes and behaviors, and, subsequently,

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ACCEPTED MANUSCRIPT reducing HIV stigma levels. In South Africa, it was observed that the positive effects of media intervention on changes in knowledge and stigmatizing attitudes lead to behavior change and increased HIV test uptake (Hutchinson, Mahlalela, & Yukich, 2007). The influencing normative behavior strategy may follow two of the mechanism to

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reduce HIV stigma by changing stigmatizing attitudes and behaviors and, subsequently, increasing HIV test uptake. For example, a study by Maman et al. (2014) reported on a

community-based model of HIV counseling and testing that incorporated the influencing

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normative strategy and was able to increase HIV test uptake in Tanzania and Zimbabwe. The study found that, due to the effect of the intervention, HIV-related discussions became

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dominated by HIV testing information in all communities over time, and that the discussions in intervention communities were more detailed and more often grounded in personal testing experiences that lead to changes in stigmatizing attitudes and behaviors (Maman et al., 2014). The support strategy may reduce HIV stigma by changing stigmatizing behaviors of

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the people and, subsequently, increasing HIV test uptake (Doherty et al., 2013; Varas-Diaz et al., 2013). This was well illustrated in Uganda (Kaleeba et al., 1997) when interventions, such as providing counseling and social support, helped PLWH and their families cope with

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HIV and also changed people’s stigmatizing behaviors and increased HIV test uptake.

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Moreover, the interventions significantly increased the acceptance of PLWH by their families and the communities (Kaleeba et al., 1997). The developing regulatory law strategy may reduce HIV stigma and increase HIV test

uptake by changing people’s stigmatizing behaviors. For example, interventions, such as implementing opt-out testing policies, in which women are told that HIV testing is being carried out along with other routine tests unless she declines the test, has helped to significantly increase HIV test uptake compared to voluntary testing policies in some developing countries (Medley, Garcia-Moreno, McGill, & Maman, 2004). Opt-out testing

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ACCEPTED MANUSCRIPT services allow women to make a decision to have an HIV test along with other routine tests, thus reducing the fear of social stigma associated with HIV testing. Contextual Factors Influencing Stigma Reduction and HIV Test Uptake Link and Phelan’s model and several other studies have suggested that contextual

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factors may influence the abilities of HIV stigma reduction intervention strategies to produce an outcome (Link & Phelan, 2001; Maman et al., 2014; Scambler et al., 2006). In our

conceptual framework, contextual factors are differentiated as social-contextual factors and

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individual factors. Social-contextual factors are societal-level constructs that are not derived from the characteristics of the individual, including, for example, availability of HIV-related

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health services, health worker-related factors, social trust, and PLWH living in the neighborhood. Individual factors, on the other hand, are individual characteristics, including, for example, risk perception, interaction with PLWH, and fear associated with HIV testing. The conceptual framework illustrates three possible pathways through which

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contextual factors can influence the mechanism of stigma reduction and HIV test uptake. First, social-contextual factors may directly influence the stigma reduction process and subsequently influence HIV test uptake behaviors. For example, studies from South Africa

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(Doherty et al., 2013) and Zambia (Jurgensen et al., 2013) revealed that the intervention to

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increase access to HIV testing through a home-based testing approach reduced HIV stigma and increased HIV test uptake. The participation of local health workers, support from local leaders, and community mobilization was also reported to be crucial for the success of the intervention because it helped to ensure people’s trust for health workers and HIV testing services that reduced HIV stigma and increased HIV test uptake (Jurgensen et al., 2013). Nevertheless, social-contextual factors need not always provide support to show an increase in the effect of interventions to reduce HIV stigma and increase HIV test uptake. For example, another study from South Africa (Nkonki et al., 2007) found that, because of health

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ACCEPTED MANUSCRIPT system (social-contextual) problems such as non-availability of health workers and lack of HIV test kits, prevention of mother-to-child transmission programmes had not increased use of HIV-related prevention services, including HIV testing. Moreover, lack of health workers and HIV test kits were also reasons that voluntary counseling and testing policies had not

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reduced HIV stigma and, consequently, not increased HIV test uptake in some developing countries (Medley et al., 2004).

Second, social-contextual factors shape individual factors, such as risk perception and

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decision to test for HIV, and it is possible that interactions between social and individual factors influence the effect of stigma reduction on HIV test uptake (Jurgensen et al., 2013;

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Maman et al., 2014; Nkonki et al., 2007). A study from Zambia reported that reductions in HIV stigma levels leading to increased HIV-test uptake might not have been attributed to exposure to home-based voluntary counseling and testing services alone (Jürgensen, Michelo, Sandøy, & Fylkesnes, 2011). Instead, the stigma reduction might have been due to social

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mobilization and on-going social processes that changed people’s negative attitudes toward HIV testing and increased motivation to test (Jürgensen et al., 2011). One example of an ongoing social process may occur when PLWH live in a neighborhood and interactions

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between people with and without HIV reduce fears of both HIV and testing for HIV. Access

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to and interactions with PLWH can provide opportunities for people who do not know their HIV status to learn about the consequences of the infection, perceive their own risks, and decide to have an HIV test (Sambisa, Curtis, & Mishra, 2010). On the other hand, it is also possible that interactions between social contextual

factors and individual factors may not help reduce HIV stigma or increase HIV test uptake. For example, in Nigeria, the immediate effect of the Same-Sex Marriage Prohibition Act caused gay men and men who have sex with men (MSM) to experience increased fear of HIV stigma and discrimination. Despite health system efforts to increase HIV test uptake in the

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ACCEPTED MANUSCRIPT country, the increased fear of stigma and discrimination lead to avoidance of testing services by gay men and MSM (Schwartz et al., 2015). Third, HIV stigma reduction can be directly associated with individual factors, such as knowledge, risk perception, and fear, to influence HIV test uptake behavior. For example,

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a study from Peru revealed that stigma reduction and increased HIV test uptake was

associated with increased access to motivational messages that encouraged participants to overcome the fear of getting tested (Blas, Menacho, Alva, Cabello, & Orellana, 2013). In

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Nigeria, despite an entertainment-education intervention that changed some HIV stigmarelated attitudes and intentions to test for HIV, it was also noted that risk perceptions about

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HIV also mediated the relationship between both motivations to participate in the program and intentions to test (Lapinski & Nwulu, 2008). In Haiti, the introduction of quality HIV care has led to a rapid reduction in stigma, with resulting increased uptake of testing service (Castro & Farmer, 2005). Moreover, it was found that, unlike access to quality HIV care,

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socio-economic factors, such as income, also determined an individual’s attitudes toward HIV testing (Castro & Farmer, 2005).

Discussion

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The framework resulting from our scoping review sheds new light on the effect of

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HIV stigma reduction intervention strategies on HIV test-uptake. To our knowledge, this is the first conceptual framework that specifically illustrates potential mechanisms underlying the ability of HIV stigma reduction intervention strategies to increase HIV test uptake. Our conceptual framework can be used to guide quantitative, qualitative, or mixed

method empirical studies that aim to explain mechanisms underlying HIV stigma reduction and how it influences HIV test uptake. For example, the framework provides a new classification of HIV stigma reduction intervention strategies that include interventions targeting both the general population and PLWH and having multiple outcomes. This may

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ACCEPTED MANUSCRIPT serve as partial background or may help to frame a research question providing relevant information about interventions, populations, and outcomes to study the effect of HIV stigma reduction intervention strategies on HIV prevention behavior, including HIV test uptake. It may also help to map existing literature and other researchers’ points of view and

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observations on HIV stigma reduction that would help situate new studies in terms of

previous works (Armstrong, Hall, Doyle, & Waters, 2011). Moreover, our conceptual

framework can be used to (a) identify and assess how particular variables connect with each

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other to form a mechanism, (b) examine the relative strength of the potential mechanisms, and, (c) most importantly, serve as a reference point to interpret findings (Hudon et al., 2015;

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Triana, 2008).

In this scoping review, we used literature on HIV stigma from communities with marked differences in HIV epidemiology. One can assume heterogeneity in the ways in which HIV stigma is experienced and the interventions and mechanisms that work to reduce

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HIV stigma and increase HIV testing across different communities and individuals. Thus, it is important to take contexts into account while studying the mechanisms and outcomes of stigma reduction. Therefore, the framework we developed is meant to feed into a larger

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review project where we will conduct a realist review that will synthesize existing studies to

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understand the effect of HIV stigma reduction intervention strategies on HIV test uptake and how one or more individual and social-contextual factors influence the process in low and middle-income countries. A realist review first aims to develop and refine a preliminary program theory that explains how context influences mechanisms to generate outcomes (Pawson & Tilley, 1997). In a realist review, our conceptual framework would provide the basis for preliminary program theory as a set of context-mechanism-outcome configurations that would guide a realist review to investigate whether, why, or how intervention strategies produce observed

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ACCEPTED MANUSCRIPT outcomes, for whom, and in what circumstances (Triana, 2008). The overall aim of the realist review will be to develop and refine the conceptual framework so that program managers and decision makers can benefit from a theoretical approach to conceptualize the best ways to

uptake and subsequently, to reduce the rate of HIV transmission.

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design and implement HIV stigma reduction intervention strategies to increase HIV test

We have also outlined research gaps in the area of the effect of stigma reduction

intervention strategies. For example, research has shown that a group of interventions that

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would engage more than one strategy and target both PLWH and the general population

would be more effective in reducing HIV stigma and subsequently increasing HIV test uptake

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(Brown et al., 2003; Mahajan et al., 2008; Stangl et al., 2013). However, it is not clearly known why interventions with multiple strategies are more effective in reducing stigma and which strategy in particular is more effective than the other. In this scoping review, we conceptualized HIV stigma reduction in general and did not look specifically at reduction of

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internal or external stigma, or reduction in HIV testing stigma. In addition, stigma reduction and HIV test uptake could influence disclosure rates, which was not illustrated in our study (French, Greeff, Watson, & Doak, 2015). Some of that information may come from the

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proposed realist review. However, more empirical studies are required to fill research gaps

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related to the effect of HIV stigma reduction intervention strategies. Results from these studies may be used to empirically test and validate the framework. Our scoping review had limitations. The first limitation is that the review will be

difficult to reproduce, as our selection of articles and development of the framework was based on the judgment of relevance (Wong, Greenhalgh, Westhorp, Buckingham, & Pawson, 2013). Articles were included based on purposive sampling strategies, so it is possible that we missed important studies. In addition, the lack of critical appraisal of the included studies might have influenced our study results and, thus, should be cautiously used for program

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ACCEPTED MANUSCRIPT purposes. Conclusion The positive association between HIV stigma reduction and HIV test uptake is clear. The framework we have described attempts to illuminate fundamental mechanisms that HIV

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stigma reduction intervention strategies follow to reduce HIV stigma and increase HIV test uptake. The framework further describes mechanisms that are influenced by interactions of various social-contextual and individual factors. We believe that this framework will help

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guide future research to explain mechanisms underlying HIV stigma reduction and how

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stigma reduction intervention strategies produce outcomes across different contexts.

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men who have sex with men to get tested for HIV through the Internet and mobile

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Booth, A., Carroll, C., Ilott, I., Low, L. L., & Cooper, K. (2013). Desperately seeking

dissonance: Identifying the disconfirming case in qualitative evidence synthesis.

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Cross, H. A., Heijnders, M., Dalal, A., Sermrittirong, S., & Mak, S. (2011). Interventions for

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ACCEPTED MANUSCRIPT Key Considerations • Reducing HIV-related stigma can lead to increases in the uptake of HIV testing. • Stigma-reduction mechanisms are influenced by an interaction of various social-contextual

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Table 1 Summary of Included Studies

Review

Test variety of interventions to decrease HIV stigma

Theoretical paper

Identify discrete components of stigma that should be targeted in stigma interventions and programs

Original research (Quantitative)

International HIV/AIDS Alliance, 2011 Joint United Nations Program on HIV/AIDS, 2012 Jurgensen et al., 2013

Program report

Assess effect of home-based HIV counseling and testing on the prevalence of HIV testing and reported behavioral changes in rural sub district of South Africa Help integrate stigma reduction into HIV programming

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Brown, Macintyre, & Trujillo, 2003 Cross, Heijnders, Dalal, Sermrittirong, & Mak, 2011 Doherty et al., 2013

Key findings
In order to motivate HIV testing in MSM, interventions needed to be based on motivational messages that encouraged participants to overcome fear of getting tested.
Messages needed to increase HIV risk perception by eliciting risky situations experienced by MSM.
Stigmatizing and stereotyping messages or images about "being gay” acted as deterrents for getting tested.
Stigma could be reduced through a variety of interventions (information-based, contact with affected groups, coping skills acquisition, and counseling approaches).
Few studies assessed long-term changes in behaviors over time.
Stigma is produced by perceived differences in individual experiences, social attributes, and power between stigmatized people and perpetrators.
Stigma affects different levels in society simultaneously; stigma programs should be multitargeted and designed with an intention to adjust interactions between groups at different societal levels.
Home-based HIV counseling and testing increased HIV testing rates.
The intervention had effects beyond HIV testing.

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Aim of the Study Identify key features and preferences to be used to tailor culturally-appropriate messages through Internet and mobile phones to motivate for HIV testing in MSM

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Type of study Original research (Qualitative)

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Author/date Blas, Menacho, Alva, Cabello, & Orellana, 2013


Different examples of stigma reduction interventions have been developed and integrated into HIV programs for long-term impact and sustainability.

Explain key HIV stigma and discrimination programs


Programs aimed at reducing HIV stigma and discrimination should address actionable causes of stigma and empower people living with and vulnerable to HIV.
Actionable causes included ignorance about the harm of HIV stigma, continuing irrational fears of infection, and moral judgment.

Original research (Quantitative)

Investigate possible explanations for high acceptance of home-based voluntary HIV counseling and testing in pair-matched cluster-randomized trial in Zambia.


Acceptance of HIV testing and counseling was dependent on stigma, trust, and gender.
Confidentiality of home-based voluntary HIV testing and counseling was required to overcome stigma-related barriers; local counselors were important to ensure trust in the services.
High levels of couple counseling with home-based voluntary HIV counseling and testing contributed to closing the gender gap in HIV testing and had benefits for both genders and

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Program report

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Test the effectiveness of a mediated intervention based on entertainmenteducation approach to reduce HIV-related stigma and risk perceptions in Abuja, Nigeria Conceptualize HIV stigma

Theoretical paper

Mahajan et al., 2008

Review

Maman et al., 2014

Original research (Mixedmethods)

Identify research gaps and summarize existing knowledge about challenges to effective intervention Assess attitudinal and behavioral changes in study outcomes including HIV testing norms, HIV-related discussions, and HIVrelated stigma

Nkonki et al., 2007

Original research (Qualitative)

Examine missed opportunities for participation in a prevention of mother-tochild transmission program in South Africa

Parker & Aggleton, 2003

Review

Develop a new framework to understand HIV-related stigma and its effects

Perry, Fishman, Jacobsberg, Young, & Frances, 1991 Sambisa, Curtis, &

Original research (Qualitative)

Examine effectiveness of three psychoeducation interventions to reduce emotional distress after voluntary serologic testing for HIV

Original research

Identify the independent effects of stigma on HIV test-uptake, with particular


Interventions that focus narrowly on only one mechanism at a time are likely to fail, because their effectiveness will be undermined by other contextual factors.
Approaches to reducing stigma must be multifaceted and multilevel: (a) multifaceted to account for multiple domains of HIV stigma, and (b) multilevel to account for individual and structural levels of stigma and discrimination.
The intervention (community mobilization, increased access to voluntary counseling and testing, post-test support services) group reported fewer barriers and greater motivation to test
A change in HIV-related stigma over time was found in Tanzania and Zimbabwe.
Intervention was associated with more favorable social norms regarding HIV testing, more HIV discussions, and qualitative changes in HIV-related stigma.
Participation failure in the program was not due to stigma and ignorance, but because of health systems failures.
Health Systems failures included non-availability of counselors, lack of supplies such as HIV test kits and consent forms, and health staff giving women incorrect instructions.
Stigma feeds upon, strengthens, and reproduces existing inequalities of class, race, gender, and sexuality.
There was a need for new programmatic approaches that used both stigmatized individuals and general populations as resources for social change.
Stress prevention training was particularly helpful in reducing fear and shame after notification of HIV seropositivity.

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potentially for the prevention of HIV transmission.
Counseling programs were effective to change people's behaviors.
Counseling program helped people reveal HIV serostatus to relevant others, accept PLWH in families and communities, seek early treatment, and combine prevention and care.
The intervention increased HIV risk perception and changed some stigma-related attitudes, particularly for male participants.
Risk and stigma perceptions significantly impacted intentions to test for HIV.

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Help clients and their families cope with HIV infection

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Original research (Qualitative) Original research (Qualitative)

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Kaleeba et al., 1997


Respondents who both knew someone with HIV and had observed discrimination against someone with HIV were more likely to test for HIV through all pathways, while those who knew

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Theoretical paper

Schwartz et al., 2015

Original research (Quantitative)

Stangl, Lloyd, Brady, Holland, & Baral, 2013 U.S. Agency for International Development, 2006 Varas-Diaz et al., 2013

Review

Assess the immediate effect of a prohibition act on stigma, discrimination, and engagement in HIV prevention and treatment services in MSM in Nigeria Obtain more complete picture of the full range of intervention efforts and their effectiveness Explain challenges and gaps that remain in measuring stigma

Original research (Quantitative)

Test the effectiveness of training of health care professionals

Scambler’s hidden distress model summarized three propositions:
Due to a stigmatizing condition, people develop a felt stigma, in which they fear potential discrimination.
Due to the fear of potential discrimination, they choose a strategy of non-disclosure and concealment.
The net effect is that felt stigma is typically more disruptive than enacted stigma.
Reported history of fear of seeking health care was significantly higher in post-law visits than in pre-law visits, as was avoidance of health care.
192 MSM reported fear of seeking health care was higher in post-law than pre-law period.
Loss to follow-up and incident health care avoidance were similar across periods.
Most interventions targeted a single level and a single domain of HIV stigma.
While the majority of studies were effective at reducing the aspects of stigma they measured (direct outcomes), none assessed the influence of stigma reduction on HIV-related health outcomes (indirect outcomes).
The evaluation of effectiveness of stigma reduction interventions should capture multiple domains of stigma, including fear, values, disclosure, and discrimination.
There is a strong need to develop indicators for understudied aspects of stigma.

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Program report

someone with HIV but had not observed stigma were more likely to test voluntarily.

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Scambler, Heijnders, & van Brakel, 2006

emphasis on three pathways to testing: voluntary testing, testing when offered, and testing when required Understand experiences and coping strategies of people living with stigmatized conditions

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Interventions to reduce HIV stigma should be implemented as part of formal training of future health care professionals.
Intervention group participants had lower HIV stigma levels than control participants after the intervention. Note. MSM = men who have sex with men; PLWH = people living with HIV infection.

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Table 2 Description of Different Stigma Reduction Intervention Strategies Used in the Framework Outcomes

Peer education, in-depth discussion, lecture, role-play, interactions, advertisement, radio broadcast, school curriculum Availability of testing and treatment, developing platforms to discuss stigma, community meeting, community organizing One-to-one counseling, empathy instructions, group counseling, support groups, training, contact Providing compensation, rescinding laws that criminalize HIV and homosexuality, HIVrelated health policies, incentives

General population, at-risk population groups, and people living or associated with HIV General population, at-risk population groups, and people living or associated with HIV At-risk population groups and people living or associated with HIV General population, at-risk population groups and people living or associated with HIV

Increase knowledge and attitude (direct), change stigmatizing behavior (indirect), increase HIV test uptake (indirect) Change stigmatizing attitudes and behavior (direct), increase HIV test uptake (indirect)

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Populations

Change stigmatizing behavior (direct), increase HIV test uptake (indirect) Change stigmatizing behavior (direct), increase HIV test uptake (indirect)

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Interventions with HIV-specific fact-based information-based written or verbal communication and education as a major component Influencing Interventions related to providing HIV-related normative services and enhancing community behavior organization and actions that would influence human behavior Providing HIV-specific interventions that provide support support by teaching coping skills, counseling, and directly contacting people living close to HIV Developing Interventions that incorporate HIV-specific regulatory legislation that protects and respects the laws human rights of PLWH and supersedes negative customary laws Note. PLWH = people living with HIV infection.

Interventions

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Definition

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Intervention Strategies Awareness creation

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Convenience Sampling

Disconfirming Sampling

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Selected 4 systematic reviews on HIV stigma or that tested effectiveness of HIV stigma reduction interventions

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Intensity Sampling

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Selected 3 program reports and 3 theoretical articles that provided specific information about HIV stigma and about implementation of HIV stigma reduction programs and interventions.

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Selected 11 empirical research articles that provided information on the mechanism of stigma reduction and contextual factors that influence the proposed mechanisms

Developing the conceptual framework

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Figure 1. Purposeful sampling strategies.

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Improve knowledge

Influencing normative behavior

Change attitude

Providing Support

Behavior change

Reduced HIV stigma

HIV test-uptake

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Developing regulatory laws

Individual factors Risk perception, interaction with PLWH, fear to test for HIV, income

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Awareness creation

Social-contextual factors Availability of HIV-related health services, health worker-related factors, social trust, community discussion, social support

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Figure 2. Conceptual framework explaining the effect of stigma reduction intervention strategies on HIV test uptake. Note. PLWH = people living with HIV infection.

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