Article Text

Influences affecting decision-making regarding use of pre-exposure prophylaxis among black men who have sex with men in the USA: a systematic review and meta-synthesis
  1. Freddie Hutchins,
  2. Nicholas Drey
  1. School of Health & Psychological Sciences, City University of London, London, UK
  1. Correspondence to Freddie Hutchins, School of Health & Psychological Sciences, City University of London, London, EC1V 0HB, UK; frederick.hutchins{at}city.ac.uk

Abstract

Aim To systematically identify, evaluate, and synthesise qualitative research examining positive and negative influences affecting decision-making behaviour among black men who have sex with men (BMSM) in the USA regarding use of pre-exposure prophylaxis (PrEP).

Background Used correctly, PrEP is highly efficacious in preventing HIV infection and is available via healthcare services throughout the USA. BMSM are a key target population for HIV prevention services, however their engagement with these services is low. With potential barriers to access ranging from systemic to personal, a phenomenological perspective on the influences affecting individuals’ decision-making is essential, helping to better understand the needs of this target population and guide development and delivery of more effective future policy and intervention services.

Design Qualitative meta-synthesis with meta-aggregation.

Data sources The electronic databases Medline, CINAHL, APA PsycInfo, Embase and Ovid Emcare were comprehensively searched from inception to 21 January 2022.

Review methods Systematic identification, quality assessment and synthesis of existing qualitative research according to protocols of meta-aggregation. This included identifying salient study findings and corroborating illustrations from the data, sorting like findings into descriptive themed categories and developing transformative synthesised statements from aggregate appraisal of category findings.

Results Seventeen studies met the inclusion criteria and were assessed to be of acceptable quality. Synthesis of study data yielded 30 categories grouped under five themes: Stigma, Discrimination, Mistrust, PrEP positivity and PrEP negativity. Twelve synthesised statements were produced to provide a summary of the results and suggest improvements to the delivery of future PrEP services and interventions.

Conclusion A more targeted approach focused on advocacy and ambassadorship outside of clinical settings may be more influential in positive decision-making regarding use of PrEP in BMSM populations than relying on traditional outreach methods via institutions and their representatives where stigma, mistrust and structural inequalities perpetuate.

  • Pre-Exposure Prophylaxis
  • QUALITATIVE RESEARCH
  • Attitude to Health
  • Sexual Behavior

Data availability statement

Data are available in a public, open access repository.

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Introduction

Antiretroviral pre-exposure prophylaxis (PrEP) medication is taken to reduce risk of sexually acquired HIV-1 infection in adults.1 Granted Food and Drug Administration (FDA) approval for use in the USA in 2012,2 PrEP is a recommended option for HIV prevention in HIV-negative men who have sex with men (MSM), a population group identified as being at elevated risk of HIV acquisition.3 Furthermore, data in the USA show that in 2019 black/African American persons held a disproportionate burden with regards to HIV infection, accounting for 41% of HIV infections while comprising only 13% of the US population as whole. And of these infections, 62% were attributed to male-to-male sexual contact,4 suggesting black MSM (BMSM) to be a priority population for HIV reduction.

Safe and effective use of PrEP requires substantive engagement with healthcare services—both to access treatment and continue use thereafter.5 Inequalities exist, however, in populations’ engagement with such services. Meta-analysis of patterns of HIV testing among BMSM in the USA found inadequate or obstructed access to healthcare as a result of geographical location, low annual income, history of homelessness and lack of health insurance to be the primary reasons for non-engagement with HIV services.6 These structural inequalities speak to the scope of racial and ethnic disparities related to PrEP and barriers to PrEP uptake and provision that operate across multiple levels including the individual, network, healthcare system and structural levels.7 While structural barriers are an important consideration, they do not illuminate the range of individual attitudes, values and beliefs governing the acceptability of healthcare interventions.

A recent scoping review found that further research into the intersecting stigmas affecting MSM is vital in supporting implementation of HIV services and informing wider healthcare policy aimed at HIV prevention.8 Furthermore, a recent meta-analysis looking at barriers and facilitators to PrEP use among BMSM found this target population remained underrepresented in key stages of the care continuum, chiefly regarding issues of uptake and adherence.9 With potential barriers to PrEP access ranging from systemic to personal, this review aims to synthesise existing knowledge to gain insight into the influences affecting decision-making among BMSM regarding use of PrEP, to better understand the needs of this target population and guide development and delivery of more effective future policy and intervention services.

In selecting the black male experience as a focus for investigation, we acknowledge that the socially assigned classification of race or gender may differ from an individual’s self-identification with these characteristics.10 Furthermore, in using race and ethnicity terminology we recognise a widespread failure to acknowledge the heterogeneity of people of Global Majority populations, who are frequently misconceptualised as homogenous.11 As such ‘Black’ is not intended as a catch-all to describe the multivarious racial and ethnic groupings of people of African origin included in the studies: where possible, racial and ethnic labels are used as supplied by participants themselves. Where these are not available as part of wider academic discussion, the term ‘Black’ is used in the exploration of the phenomena under review; however it is recognised that use of such terms is only appropriate until such instance as a more specific designation is supplied.12

Methods

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) was used to structure this systematic review.13

Eligibility criteria

Studies reporting peer-reviewed primary research conducted among BMSM populations in the USA using qualitative or mixed-methods approaches were included, where these focused solely on the BMSM experience concerning PrEP or included data that could readily be extracted. The PEO framework14 used to develop the research aim ensured that all the studies selected focused on the population (BMSM), exposure (PrEP) and outcome (influences on decision-making) in question. See online supplemental material S1 for the table showing development of related eligible search terms used along with individualised database indexes and Medical Subject Headings (MeSH) descriptor data. To achieve a balance between sensitivity and specificity, searches were limited to keywords appearing in the title or abstract.14

Supplemental material

Information sources and search strategy

Medline, CINAHL, APA PsycInfo, EMBASE and Ovid Emcare databases were searched for peer-reviewed primary research published up to 21 January 2022 (example search strategy listed in online supplemental material S2). Reference list searching was undertaken to ensure no studies eligible for inclusion were missed. No language restrictions were applied. For the purposes of reflexivity and transparency, we acknowledge the impact of researcher positionality and potential bias. Both the authors of this review are white, cis-gender male, this positionality affecting the research process and how a research protocol is constructed, designed and conducted.15

Study selection and data extraction

277 papers were identified via database searches and three further papers via manual search of reference lists from a recent scoping review16 and related systematic review.9 Removal of duplicates left 158 papers to be reviewed at abstract, with exclusions made according to the predetermined eligibility criteria. See online supplemental material S3 for a PRISMA flow diagram charting this process.

A study-specific data extraction form (online supplemental material S4) was used to extract data from the selected studies including author, publication date, journal of publication, location of research, research design, method of analysis, study aims and objectives, sample size, eligibility criteria, mean age of study participants, study sample characteristics and the main findings of each study.

For the purposes of meta-aggregation, individual study findings were then extracted, defined as verbatim extracts of authors’ analytical interpretations of their data. Each finding requires corroboration by an accompanying illustration, defined as a direct quotation in a participant’s voice. Online supplemental material S5 lists full details of study findings and accompanying illustrations.

Quality appraisal and risk of bias

Critical appraisal of qualitative data is subject to differences in approach and overarching questions as to its validity.17 The purpose of quality assessment in this review was to ensure that the studies selected present quality data that has been gathered in an ethical, transparent fashion and which might therefore be deemed acceptably representative of the populations under study. The Critical Appraisal Skills Programme (CASP) Qualitative Checklist18 was selected to evaluate methodological quality of the studies, being the most commonly used tool for quality appraisal in healthcare-related evidence syntheses.19 The overall quality of the studies was found to be good, with no studies excluded based on quality appraisal.

A principal issue was a lack of consideration given to the relationship between researcher and study participants, with only four papers addressing this point substantively.20–23 This overall lack of self-reflexivity is notable given researcher positionality is key to a study’s framing, investigation and analysis.15 This is demonstrated in the studies varying inclusion and exclusion criteria with regards to participants’ racial profile, creating a significant potential source of selection bias.13 Risk of selection bias was further compounded by use of purposive or convenience sampling methods reported by all studies: several studies discuss recruitment of ‘homogenous’ samples of mainly healthcare-engaged, PrEP-aware and outwardly identifying LGBTQ+ individuals,23–25 noting failure to represent the range of individuals for whom PrEP could be valuable.

See online supplemental material S6 for quality assessment overview.

Data synthesis and analysis

Meta-aggregation is a method for combining data from original studies that acknowledges the practicality and usability of a primary author’s findings without seeking to re-interpret them, instead offering generalisable statements in the form of recommendations to guide practitioners and policy makers.26

First, salient author findings are extracted verbatim from the studies, accompanied by illustrations in the form of quotations from first-order data that support the finding. Subsequent meta-synthesis entails sorting of findings into categories and creating category descriptions to provide short, explanatory statements which convey the whole, inclusive meaning of a group of similar findings. Finally, categories may be grouped under themes, and synthesised statements produced from an aggregate appraisal of the category descriptions. In this review the themes, categories and synthesised statements were developed by the lead author (FH) and then reviewed, corroborated and refined in conversation with the second author (ND).

Results

17 reports based on 16 studies met the inclusion criteria and were included in the review (table 1). The studies were published between 2015 and 2021. Six studies were conducted in Southern States, five in the Midwest, three in New York City and two in Los Angeles. A range of participants with diverse characteristics are represented from PrEP-naïve to PrEP-aware participants, sample ages from 15 years and up, samples including those who identified as black to those adhering to specific racial selection criteria, samples including those who identified as male to those assigned male gender at birth, and samples including those who were ‘out as gay’ to those reporting sex with men.

Table 1

Literature summary table

Online supplemental material S7 details a complete list of illustrations used in synthesis and their accompanying category allocations, with online supplemental material S8 showing incidence of categories across the papers.

In all, 30 categories were identified, groupable under five themes: Stigma, Discrimination, Mistrust, PrEP Positivity and PrEP Negativity. The ensuing table 2 provides a summary of evidence in the form of synthesised statements.

Table 2

Meta-aggregation: synthesised statements

Stigma

Taken in broadest terms to consider how marginalised populations are perceived,27 stigma in a multiplicity of forms was found to hold the greatest influence over individuals’ decision-making regarding use of PrEP.

Family stigma

Family stigma loomed largest in participant responses, demonstrating the extreme difficulty many participants faced in adopting PrEP-positive behaviours close to home. Instances of family stigma ranged from silent refusal to acknowledge sex or sexuality20 to active rejection of such behaviours, with attendant threats of ostracisation.24 28 Families were often reported as a fulcrum for the enforcement of wider stigmatised messages, particularly where these emanated from religious or cultural community sources.

Peer community stigma

Surprisingly, stigma within individuals’ identified peer communities was frequently cited as a significant barrier to PrEP positivity. While certain social or cultural community stigmas concerning homosexuality are well documented in the literature,29 this review found a marked reluctance even among gay-identifying peer groups to adopt PrEP-positive messages.

Stigmatised messaging

Stigmatised and misaligned PrEP messaging was a widely reported source of frustration. Views were clear on the benefits of scaling up the conversation around PrEP use to include those outside of the highly stigmatised groups currently being targeted, whether because of sexuality or race.25 Several participants wished to dissociate themselves from PrEP messaging, one respondent pointing out that the only time black gay men are seen in commercials is when discussing HIV risk, worsening the perceived and experienced stigma he already faces in his community.21

Intersectional stigmas: cultural community, religious, internalised, partner, medical, social

Intersection of multiple stigmas was evident, demonstrating how multiple social identities held by Global Majority individuals interact to affect ways in which they are perceived, and able to operate in the world.30 The black community was cited as a source of negative attitudes towards HIV, homosexuality and sex in general.20 21 24 31 These negative attitudes were described as being taught to children in the family home31 and cultivated among church and wider social communities. In nearly all instances, religious and family stigmas intersected, compounding the enmeshed and deeply entrenched sense of stigma already felt by participants, and resulting in instances of internalised stigma.32 One participant poignantly remarked:

"…it’s just difficult to live in a world that tells you you should hate yourself." 32

Given the difficulties individuals faced in reconciling their sense of self with the stigmas they faced, it is unsurprising that partner stigma presented a significant barrier to PrEP-positive decision-making. PrEP as a signifier of infidelity was given in two studies,32 33 or else individuals reported a reluctance or inability to navigate partner conversations on the subject.34 Among those who had successfully navigated barriers of intersecting stigmas and were able to report successful PrEP use or healthcare-seeking behaviour, stigma was still encountered from the medical profession itself.35 Furthermore, stigmatising healthcare professionals operate in stigmatising institutions; the settings of clinic or hospital intersecting with wider social stigmas around being seen using HIV services.25

Discrimination

Medical discrimination

Understood in terms of actions (as opposed to attitudes) directed towards marginalised populations,27 discrimination recounted in medical institutions was notable in its potential for especially devastating outcomes, with one participant horrified by a discriminatory experience.34 The distinction between attitudinal stigmas and active acts of discrimination was not always clear-cut: while negative attitudes displayed by peer community groups or religiously motivated family members presented intractable stigmatised disapproval to be navigated on a daily basis, it was the words and actions of those outside participants’ peer or family circles—most notably in medical settings—that were most likely to be felt as discrimination.23 32

Violent and institutional discrimination

One participant recounted a deeply traumatic event of violence inflicted at school because of his sexuality.31 Discrimination enacted by and experienced within institutional settings was recounted as a macro reason for PrEP-negative decision-making behaviour, with one participant citing the struggles faced by the black community to cope with unemployment as the reason care-seeking behaviour around PrEP was not high on his agenda.36

Mistrust

Medical, cultural community and institutional mistrust

Mistrust of healthcare professionals and the medical institutions they represent was a widely held perception among participants, and the category with the most iterations in this meta-synthesis. Mistrust ranged from scepticism of the motivations of individual healthcare professionals towards participants33 to the broadest mistrust of a systemically racist healthcare system. Participants mentioned the Tuskegee experiments37 and theories concerning intentional HIV infection with bogus PrEP products and the promotion of unregulated drugs.20 24 38 Like Stigma, these conflations of Mistrust spoke to intersecting and deep-seated attitudes of mistrust towards healthcare services shared among participants’ cultural communities20 as well as a generalised attitude of grievance towards a persecuting government24 or the self-interested agendas of big pharma companies.34

Peer community mistrust

One participant made emphatic mention of trusting a medical professional, framing this attitude in mistrust of a friend’s recommendation that he try PrEP.33 This demonstrates the complexity of the sociocultural systems in which PrEP messaging plays out and how it is received by target individuals: in this instance, coming from the wrong source (a friend) was enough to confound PrEP-positive decision-making behaviour in an individual who was otherwise trusting of medical professionals and healthcare-engaged.

Partner mistrust and problematic partner trust

While there were two instances of participants describing feelings of judgement or mistrust towards partners either using PrEP or considering its use,28 36 the complexity of navigating PrEP use within relationships was further played out in a final notable instance of problematised partner trust in a presumed monogamous relationship, resulting in a missed opportunity to access PrEP and prevent HIV infection.21 Such instances portray PrEP use within relationships as a problematic, binary choice between non-adherence and trust or adherence and mistrust.

PrEP positivity

Self-empowerment

Expressions of self-empowerment were powerful drivers of PrEP-positive decision-making behaviour. First among these was the potential for PrEP to effect self-empowerment in individuals suffering social marginalisation.39 On an intimate level, PrEP enabled users who had internalised fearful messages around HIV to feel liberated from a pervading sense of doom39 and, strikingly, enact self-love.22

PrEP ambassadorship and peer community empowerment

The most emphatic PrEP-positive messages came from those individuals happy and confident enough in their choice to act as ambassadors for their behaviour. Such individuals demonstrated a palpable sense of fervour:

“I’m just gonna shout it from the mountain to the rooftop… There is PrEP, people!” 32

Individuals reported ambassadorship on micro and macro levels, with one individual stating PrEP to be his favourite topic of conversation at house parties33 while another recounted a sense of duty to eradicate HIV from the world.37 As such, individuals advocating PrEP considered it a tool for greater personal and collective good; a means of combating stigma and empowering communities.38

Peer, co-partner and family advocacy

Ranging from a single friend acting as ‘mother of the group’ to an HIV-positive friend seeking to educate his peers,33 peers were potentially powerful advocates for PrEP-positive decision-making behaviour. In one striking instance, the integrity of a partner relationship was not compromised by the introduction of PrEP, rather it acted as an affirmation of the love and respect felt between individuals.28 This joy in the acceptance of PrEP was also possible, in one instance, within the family—one of the most problematised and stigma-prone social groups mentioned by participants as a whole:

"I told my grandma. She just hugged me. She said like 'Jesus still loves you. I still love you. Do your thing.'" 31

A conflation of family and religious approval, this is a powerful reminder of the potential for PrEP to be accepted in any space, even in those which are widely reported by participants as deeply problematic.

PrEP negativity

Non-candidacy

First among the negative attitudes towards PrEP was a generalised sense that, while PrEP may have benefits, it was nonetheless an inappropriate or unworthwhile choice for the individual in question.40 Specific objections ranged from self-identified low-risk behaviour to, in one instance, perceived invincibility from HIV infection whereby the benefits of PrEP do not apply.21 24 Furthermore, stigmatising and negative messages surrounding PrEP were given as reasons for non-candidacy, with individuals resenting the implication that they were candidates for HIV infection in the first place.23 40

Problematic access and lack of provider knowledge

Accessing PrEP presented an economic and sociocultural labyrinth through which participants must navigate.21 37 This was further complicated by lack of provider knowledge, whereby healthcare professionals uninformed of its benefits failed to champion PrEP to target individuals.33

Peer community disapproval and drug disapproval

A theme of disapproval among participants towards their peer community’s use of PrEP was also present22 as was disapproval towards pharmaceutical drugs in general.40 These instances are a reminder of participants’ individuality and their refusal to accord to a majority view with which they may not identify.

Discussion

This review found extensive agreement in the data on the existence of interpersonal and wider sociocultural factors influencing decision-making. Chief among these is stigma, extant in multiple and intersecting forms, and centred on HIV, homosexuality and race. Experienced at individual, social and wider structural levels, these stigmas present major barriers to the uptake of PrEP among BMSM. Furthermore, individuals’ experience of stigmas engendered attitudes of mistrust directed back towards these sources. These mistrusts intersected with entrenched cultural community attitudes to form negative conceptions of healthcare services in general and PrEP in particular, significantly limiting individuals’ acknowledgement of PrEP candidacy. As a result, this review found that medical and wider institutions often fail to effect positive decision-making in BMSM regarding use of PrEP, owing to the ways these institutions continue to stigmatise and discriminate against them. This supports the literature around internalised and externalised stigma acting as barriers to use of healthcare services by Global Majority ethnic groups, whereby perceptions of themselves as outsiders cause them to shun healthcare services.41

This review presents potential advocacy in several forms, from supportive black female figures31 to a ‘sexuality-affirming’ black church.22 The finding to ‘Preach PrEP’ in community settings is echoed in literature attesting interpersonal and meso-level (ie, community groups including schools, workplaces and churches) advocacy interventions to be most effective in improving acceptability and uptake of PrEP-positive decision-making behaviour.28 31 33 Key among these is a recent mixed-methods study whereby culturally appropriate patient navigation training programmes delivered to healthcare professionals working in HIV services substantially increased uptake of HIV services among BMSM; a result of equipping staff to address the unique needs and barriers to HIV care engagement among this population.42

Strengths and limitations

Agreement in the literature was not complete. An ostensible lack of transferability exists between a study conducted in Birmingham, Alabama and another in New York City. This is reflected in the data whereby incidence of new HIV infection shows marked regional disparities throughout the USA, with the highest prevalence being among southern black populations than among other groups or in other regions.43 Furthermore, availability and acceptability of PrEP as a health intervention is a global issue, and not limited solely to the USA. To date however, the authors are not aware of any studies looking at decision-making behaviour among BMSM regarding use of PrEP conducted outside of the USA, save for a study conducted in London in 2018 which, while not included as a focus for our review, nonetheless supports our findings.44 45 As a whole, the absence of older voices from the data is significant: middle-aged or older BMSM are more likely to have late-stage HIV infection at the time of diagnosis, indicating a lack of engagement with healthcare services and a need for timely intervention.6

As previously mentioned, the authors’ white, cis-gender positionalities will have influenced the study’s design, execution and synthesis of the data, which is significant in terms of whose voice—or voices—are represented in the final review: given the aim of synthesised statements is to distil the essence of a group of findings in either a descriptive or transformative manner, this approach risks losing the essence of the original studies through researcher re-interpretation of others’ interpretation.46 The GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative Research) approach was used to assess the extent to which findings were a reasonable representation of the phenomenon of interest, and to assess the strengths and limitations of the review as a whole.47 An overview of this assessment is given in online supplemental material S9, with an attempt made to grade confidence in the evidence in light of reviewer bias and positionality, as well as accounting for reporting bias in individual studies.

Implications for practice and research

This is the first comprehensive systematic review and meta-synthesis of attitudes towards PrEP among BMSM in the USA known to these researchers.

This review makes clear the need for micro-level to meso-level, ‘ground up’ interventions to improve PrEP-positive decision-making and acceptability of wider HIV and health services among BMSM. From a policy perspective, this supports the argument for a ‘Social Public Health’ approach to health interventions,48 whereby research and implementation efforts seek to align with the complexity of social dynamics, instead of presuming biomedical interventions can bypass them.34 In practice, this also makes good economic sense, given the systemic problem of policy-making without evaluation—potentially wasting money and even achieving negative outcomes.49

A key focus for further research are the other equally significant priority groups requiring protection from HIV infection including transgender persons and those of Hispanic and Latino origin.3 Work is needed among these groups to better understand their experiences and help improve acceptability and uptake of HIV intervention services. Indeed, it is clear the wealth of strategies available for ending the HIV epidemic currently outpaces the potential for implementation, with availability of PrEP to BMSM communities a prime example.50 In conclusion, a more targeted approach focused on intersocial advocacy and ambassadorship outside of clinical settings may be more influential in positive decision-making regarding use of PrEP in BMSM populations than relying on traditional outreach methods via institutions and their representatives where stigma, mistrust and structural inequalities perpetuate.

Data availability statement

Data are available in a public, open access repository.

Ethics statements

Patient consent for publication

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Handling editor Michael Traeger

  • Contributors FH conceived and devised the study, collected the data, undertook the analysis & interpretation of the data, drafted the manuscript, approved the final version and agrees to be accountable for the work. ND contributed to the design, analysis and interpretation of the work, to the drafting and revisions of the work, approved the final version and agrees to be accountable for the work. FH is the guarantor of the study.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.