How and why to use 'vulnerability': an interdisciplinary analysis of disease risk, indeterminacy and normality.

In recent years, 'vulnerability' has been getting more traction in theoretical, professional and popular spaces as an alternative or complement to the concept of risk. As a group of science and technology studies scholars with different disciplinary orientations yet a shared concern with biomedicine, self and society, we investigate how vulnerability has become a salient and even dominant idiom for discussing disease and disease risk. We argue that this is at least partly due to an inherent indeterminacy in what 'vulnerability' means and does, both within and across different discourses. Through a review of feminist and disability theory, and a discussion of how vulnerability and disease both get recruited into a binary conceptualisation of normal versus abnormal, we argue that vulnerability's indeterminacy is, in fact, its strength, and that it should be used differently than risk. Using COVID-19 management in the UK as an illustration of the current ambivalence and ambiguity in how vulnerability versus risk is applied, we suggest that instead of being codified or quantified, as it has started to be in some biomedical and public health applications, vulnerability and its remedies should be determined in conjunction with affected communities and in ways that are polyvalent, flexible and nuanced. The concept of vulnerability encapsulates an important precept: we must recognise inequality as undesirable while not attempting to 'solve' it in deterministic ways. Rather than becoming fixed into labels, unidirectional causalities or top-down universalising metrics, vulnerability could be used to insist on relational, context-specific understandings of disease and disease risk-in line with contemporary social justice movements that require non-hierarchical and non-universal approaches to problems and solutions.

'Don't lose it on the bus!': Casting the normative biosexual citizen in early Scottish pre-exposure prophylaxis provision.

The introduction of HIV pre-exposure prophylaxis (PrEP) raises important questions around how new biotechnologies are negotiated within contemporary settings and how they can shape the moral governance of biocitizens, or as we explore, biosexual citizens. This article draws on qualitative interviews and focus groups to consider how the normative biosexual citizen was cast at the start of provision in Scotland by clinical and community practitioners. Our findings show how practitioners navigated ideas around who was deserving of support and access to PrEP in the context of limited resources, interpreted what legitimate risk narratives might look like for different groups and translated particular gendered, sexualised and racialised risk profiles in the context of PrEP provision. This draws attention to how normative biosexual citizenship was not determined through meeting a set of clinical criteria and adhering to a prophylaxis regime but cast through ongoing negotiations with clinical and community practitioners in relation to normative ideas of essential care, constrained resources, risk narratives and gendered and racialised bodies. Our research indicates how access to PrEP will continue to demand particular enactments of normative biosexual citizenship that may well be at odds with the experiences and needs of communities affected by HIV.

Improving HIV pre-exposure prophylaxis (PrEP) uptake and initiation: process evaluation and recommendation development from a national PrEP program†.

BACKGROUND: HIV pre-exposure prophylaxis (PrEP) is key to HIV transmission elimination but implementation is challenging and under-researched. We undertook a process evaluation of the first 2years of a national PrEP program to explore barriers and facilitators to implementation and to develop recommendations to improve implementation, focusing on PrEP uptake and initiation. METHODS: Stage 1 involved semi-structured telephone interviews and focus groups (September 2018-July 2019) with geographically and demographically diverse patients seeking/using/declining/stopping PrEP (n =39), sexual healthcare professionals (n =54), community-based organisation service users (n =9) and staff (n =15) across Scotland. We used deductive thematic analysis, to derive and then map key barriers and facilitators to priority areas that experts agreed would enhance uptake and initiation. In Stage 2, we used analytic tools from implementation science to systematically generate evidence-based, theoretically-informed recommendations to enhance uptake and initiation of PrEP. RESULTS: Barriers and facilitators were multi-levelled and interdependent. Barriers included the rapid pace of implementation without additional resource, and a lack of familiarity with PrEP prescribing. Facilitators included opportunities for acquisition of practice-based knowledge and normalisation of initiation activities. We refined our 68 'long-list' recommendations to 41 using expert input and the APEASE (Acceptability, Practicability, Effectiveness, Affordability, Side-effects, and Equity) criteria. Examples include: provision of PrEP in diverse settings to reach all in need; co-produced, culturally sensitive training resources for healthcare professionals, with focused content on non-daily dosing; meaningful collaborative working across all stakeholders. CONCLUSIONS: These evidence-based, theory informed recommendations provide a robust framework for optimising PrEP uptake and initiation in diverse settings to ensure PrEP reaches all who may benefit.

Insights into how Malaysian adults with limited health literacy self-manage and live with asthma: A Photovoice qualitative study.

BACKGROUND: Adjusting to life with a chronic condition is challenging, especially for people with limited health literacy, which is associated with low compliance with self-management activities and poor clinical outcomes. OBJECTIVE: We explored how people with limited health literacy understand asthma and undertake self-management practices. DESIGN: We adapted the arts-based qualitative methodology Photovoice. SETTING AND PARTICIPANTS: We sampled ethnically diverse adults with asthma and limited health literacy from four primary healthcare clinics in Malaysia. After a semistructured in-depth interview, a subset of participants took part in the Photovoice component in which participants undertook a 2-week photo-taking activity and subsequent photo-interview. Interviews, conducted in participants' preferred language, were audio-recorded, transcribed verbatim, translated and analysed thematically. We used the Sorensen's framework (Domains: access, understand, appraise, apply) to describe participants' experience of living with asthma, what they understood about asthma and how they decided on self-management practices. RESULTS: Twenty-six participants provided interviews; eight completed the Photovoice activities. Participants with limited health literacy used various sources to access information about asthma and self-management. Doctor-patient communication had a pivotal role in helping patients understand asthma. The lack of appraisal skills was significant and experiential knowledge influenced how they applied information. Self-management decisions were influenced by sociocultural norms/practices, stigmatizing experiences, and available social support. CONCLUSION: Locally tailored multilevel interventions (interpersonal, health system, community and policy) will be needed to support people with limited health literacy to live optimally with their asthma in an ethnically diverse population. PATIENT/PUBLIC CONTRIBUTION: Patients were involved in the study design, recruitment, analysis and dissemination.

Sexual health literacy among gay, bisexual and other men who have sex with men: a conceptual framework for future research.

Good sexual health requires navigating intimate relationships within diverse power dynamics and sexual cultures, coupled with the complexities of increasing biomedicalisation of sexual health. Understanding this is important for the implementation of biomedical HIV prevention. We propose a socially nuanced conceptual framework for sexual health literacy developed through a consensus building workshop with experts in the field. We use rigorous qualitative data analysis to illustrate the functionality of the framework by reference to two complementary studies. The first collected data from five focus groups (FGs) in 2012 (n = 22), with gay, bisexual and other men who have sex with men aged 18-75 years and 20 in-depth interviews in 2013 with men aged 19-60 years. The second included 12 FGs in 2014/15 with 55 patients/service providers involved in the use/implementation of HIV self-testing or HIV prevention/care. Sexual health literacy goes well beyond individual health literacy and is enabled through complex community practices and multi-sectoral services. It is affected by emerging (and older) technologies and demands tailored approaches for specific groups and needs. The framework serves as a starting point for how sexual health literacy should be understood in the evaluation of sustainable and equitable implementation of biomedical sexual healthcare and prevention internationally.

Configuring the PrEP user: framing pre-exposure prophylaxis in UK newsprint 2012-2016.

Pre-exposure prophylaxis (PrEP) has been hailed as a revolutionary intervention for HIV prevention. PrEP's controversial status in the UK has generated significant media coverage. It is important to understand what role the media plays in framing PrEP policy issues. We undertook a qualitative analysis of UK newsprint articles between 2012 and 2016 to examine how PrEP was framed as a public health intervention up until a controversial policy decision not to provide PrEP in England. We identified how scientific evidence was deployed to shape two narratives: ir/responsible citizens focused on imagined PrEP users and their capacity to use PrEP effectively; and the public health imperative, which described the need for PrEP. Our analysis demonstrates the particular ways in which scientific evidence contributed to the certainty of PrEP as an effective intervention within UK newsprint. Scientific evidence also played a key role in framing PrEP as an intervention specifically for cis-gendered gay and bisexual men, playing into wider debates about who is a deserving patient and the appropriate use of public resources. Practitioners in the UK and elsewhere should be aware of these constructions of the PrEP user to ensure equitable access to PrEP beyond gay and bisexual men.

Developing an Asthma Self-management Intervention Through a Web-Based Design Workshop for People With Limited Health Literacy: User-Centered Design Approach.

BACKGROUND: Technology, including mobile apps, has the potential to support self-management of long-term conditions and can be tailored to enhance adoption. We developed an app to support asthma self-management among people with limited health literacy in a web-based workshop (to ensure physical distancing during the COVID-19 pandemic). OBJECTIVE: The aim of this study is to develop and test a prototype asthma self-management mobile app tailored to the needs of people with limited health literacy through a web-based workshop. METHODS: We recruited participants from a primary care center in Malaysia. We adapted a design sprint methodology to a web-based workshop in five stages over 1 week. Patients with asthma and limited health literacy provided insights into real-life self-management issues in stage 1, which informed mobile app development in stages 2-4. We recruited additional patients to test the prototype in stage 5 using a qualitative research design. Participants gave feedback through a concurrent thinking-aloud process moderated by a researcher. Each interview lasted approximately 1 hour. Screen recordings of app browsing activities were performed. Interviews were audio-recorded and analyzed using a thematic approach to identify utility and usability issues. RESULTS: The stakeholder discussion identified four themes: individual, family, friends, and society and system levels. Five patients tested the prototype. Participants described 4 ways in which the app influenced or supported self-management (utility): offering information, providing access to an asthma action plan, motivating control of asthma through support for medication adherence, and supporting behavior change through a reward system. Specific usability issues addressed navigation, comprehension, and layout. CONCLUSIONS: This study proved that it was possible to adapt the design sprint workshop to a web-based format with the added advantage that it allowed the development and the testing process to be done efficiently through various programs. The resultant app incorporated advice from stakeholders, including sources for information about asthma, medication and appointment reminders, accessible asthma action plans, and sources for social support. The app is now ready to move to feasibility testing.

Risk perception, safer sex practices and PrEP enthusiasm: barriers and facilitators to oral HIV pre-exposure prophylaxis in Black African and Black Caribbean women in the UK.

OBJECTIVES: UK Black African/Black Caribbean women remain disproportionately affected by HIV. Although oral pre-exposure prophylaxis (PrEP) could offer them an effective HIV prevention method, uptake remains limited. This study examined barriers and facilitators to PrEP awareness and candidacy perceptions for Black African/Black Caribbean women to help inform PrEP programmes and service development. METHODS: Using purposive sampling through community organisations, 32 in-depth, semi-structured interviews were conducted with Black African/Black Caribbean women living in London and Glasgow between June and August 2018. Participants (aged 19-63) included women of varied HIV statuses to explore perceptions of sexual risk and safer sex, sexual health knowledge and PrEP attitudes. A thematic analysis guided by the Social Ecological Model was used to explore how PrEP perceptions intersected with wider safer sex understandings and practices. RESULTS: Four key levels of influence shaping safer sex notions and PrEP candidacy perceptions emerged: personal, interpersonal, perceived environment and policy. PrEP-specific knowledge was low and some expressed distrust in PrEP. Many women were enthusiastic about PrEP for others but did not situate PrEP within their own safer sex understandings, sometimes due to difficulty assessing their own HIV risk. Many felt that PrEP could undermine intimacy in their relationships by disrupting the shared responsibility implicit within other HIV prevention methods. Women described extensive interpersonal networks that supported their sexual health knowledge and shaped their interactions with health services, though these networks were influenced by prevailing community stigmas. CONCLUSIONS: Difficulty situating PrEP within existing safer sex beliefs contributes to limited perceptions of personal PrEP candidacy. To increase PrEP uptake in UK Black African/Black Caribbean women, interventions will need to enable women to advance their knowledge of PrEP within the broader context of their sexual health and relationships. PrEP service models will need to include trusted 'non-sexual health-specific' community services such as general practice.

Provision of online HIV-related information to gay, bisexual and other men who have sex with men: a health literacy-informed critical appraisal of Canadian agency websites.

Background HIV risk and prevention information is increasingly complex and poses challenges for gay, bisexual and other men who have sex with men (GBMSM) seeking to find, understand and apply this information. A directed content analysis of Canadian HIV websites to see what information is provided, how it is presented and experienced by users, was conducted. METHODS: Eligible sites provided information relevant for GBMSM on HIV risk or prevention, were from community or government agencies, and were aimed at the public. Sites were found by using a Google search using French and English search terms, from expert suggestions and a review of links. Eligibility and content for review was determined by two reviewers, and coded using a standardised form. Reading grade level and usability scores were assessed through Flesch-Kincaid and LIDA instruments. RESULTS: Of 50 eligible sites, 78% were from community agencies and 26% were focussed on GBMSM. Overall, fewer websites contained information on more recent biomedical advances (e.g. pre-exposure prophylaxis, 10%) or community-based prevention strategies (e.g. seroadaptive positioning, 10%). Many sites had high reading levels, used technical language and relied on text and prose. And 44% of websites had no interactive features and most had poor usability scores for engageability. CONCLUSIONS: Overall, less information about emerging topics and a reliance on text with high reading requirements was observed. Our study speaks to potential challenges for agency website operators to maintain information relevant to GBMSM which is up-to-date, understandable for a range of health literacy skills and optimises user experience.

Towards preparedness for PrEP: PrEP awareness and acceptability among MSM at high risk of HIV transmission who use sociosexual media in four Celtic nations: Scotland, Wales, Northern Ireland and The Republic of Ireland: an online survey.

OBJECTIVE: To assess the awareness and acceptability of pre-exposure prophylaxis (PrEP) among men who have sex with men (MSM) and use sociosexual media at high risk of HIV infection in four Celtic nations. DESIGN: Cross-sectional study. METHODS: Online self-complete survey of 386 HIV-negative/status unknown MSM who reported condomless anal intercourse (CAI) with ≥2 men in the last year, recruited from gay sociosexual media. RESULTS: One-third (34.5%, 132/386) of the participants were aware of PrEP but over half (58.5%, 226/356) reported that they would be willing to use PrEP if it were available to them. Only men who regularly tested for HIV every 6 months (adjusted OR 2.89, 95% CI 1.54 to 5.42) were more likely to be aware of PrEP. PrEP acceptability was only associated with reporting ≥5 CAI partners (OR 2.04, 95% CI 1.2 to 3.46) in the last year. CONCLUSIONS: Low levels of PrEP awareness were reported across these Celtic nations. Only one-third of high-risk MSM had heard of PrEP but over one-half would be willing to take a daily pill to prevent HIV infection. Sociodemographic factors, commercial gay scene proximity and social network use were unrelated to considering PrEP use. However, those reporting most CAI partners were more likely to consider PrEP use.

Can a pill prevent HIV? Negotiating the biomedicalisation of HIV prevention.

This article examines how biomedicalisation is encountered, responded to and negotiated within and in relation to new biomedical forms of HIV prevention. We draw on exploratory focus group discussions on pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP) to examine how the processes of biomedicalisation are affected by and affect the diverse experiences of communities who have been epidemiologically framed as 'vulnerable' to HIV and towards whom PrEP and TasP will most likely be targeted. We found that participants were largely critical of the perceived commodification of HIV prevention as seen through PrEP, although this was in tension with the construction of being medical consumers by potential PrEP candidates. We also found how deeply entrenched forms of HIV stigma and homophobia can shape and obfuscate the consumption and management of HIV-related knowledge. Finally, we found that rather than seeing TasP or PrEP as 'liberating' through reduced levels of infectiousness or risk of transmission, social and legal requirements of responsibility in relation to HIV risk reinforced unequal forms of biomedical self-governance. Overall, we found that the stratifying processes of biomedicalisation will have significant implications in how TasP, PrEP and HIV prevention more generally are negotiated.

How acceptable are antiretrovirals for the prevention of sexually transmitted HIV?: A review of research on the acceptability of oral pre-exposure prophylaxis and treatment as prevention.

Recent research has demonstrated how antiretrovirals (ARVs) could be effective in the prevention of sexually transmitted HIV. We review research on the acceptability of oral pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP) for HIV prevention amongst potential users. We consider with whom, where and in what context this research has been conducted, how acceptability has been approached, and what research gaps remain. Findings from 33 studies show a lack of TasP research, PrEP studies which have focused largely on men who have sex with men (MSM) in a US context, and varied measures of acceptability. In order to identify when, where and for whom PrEP and TasP would be most appropriate and effective, research is needed in five areas: acceptability of TasP to people living with HIV; motivation for PrEP use and adherence; current perceptions and management of risk; the impact of broader social and structural factors; and consistent definition and operationalisation of acceptability which moves beyond adherence.

Improving HIV pre-exposure prophylaxis (PrEP) adherence and retention in care: Process evaluation and recommendation development from a nationally implemented PrEP programme.

INTRODUCTION: HIV pre-exposure prophylaxis (PrEP), in which people take HIV medication to prevent HIV acquisition, underpins global HIV transmission elimination strategies. Effective prevention needs people to adhere to PrEP and remain in care during periods of risk, but this is difficult to achieve. We undertook a process evaluation of Scotland's PrEP programme to explore barriers and facilitators to PrEP adherence and retention in care and to systematically develop evidence-based, theoretically-informed recommendations to address them. METHODS: We conducted semi-structured interviews and focus groups (09/2018-07/2019) with patients who identified as gay or bisexual men and were either using PrEP, had declined the offer of PrEP, had stopped PrEP, or had been assessed as ineligible for PrEP (n = 39 of whom n = 5 (13%) identified as trans, median age 31 years and interquartile range 14 years), healthcare professionals involved in PrEP provision (n = 54 including specialist sexual health doctors and nurses of various grades, PrEP prescribing general practitioners, health promotion officers, midwifes, and a PrEP clinical secretary), and clients (n = 9) and staff (n = 15) of non-governmental organisations with an HIV prevention remit across Scotland. We used thematic analysis to map key barriers and facilitators to priority areas that could enhance adherence and retention in care. We used implementation science analytic tools (Theoretical Domains Framework, Intervention Functions, Behaviour Change Technique Taxonomy, APEASE criteria) and expert opinion to systematically generate recommendations. RESULTS: Barriers included perceived complexity of on-demand dosing, tendency for users to stop PrEP before seeking professional support, troublesome side-effects, limited flexibility in the settings/timings/nature of review appointments, PrEP-related stigma and emerging stigmas around not using PrEP. Facilitators included flexible appointment scheduling, reminders, and processes to follow up non-attenders. Examples of the 25 recommendations include: emphasising benefits of PrEP reviews and providing appointments flexibly within individualised PrEP care; using clinic systems to remind/recall PrEP users; supporting PrEP conversations among sexual partners; clear on-demand dosing guidance; encouraging good PrEP citizenship; detailed discussion on managing side-effects and care/coping planning activities. CONCLUSIONS: PrEP adherence and retention in care is challenging, reducing the effectiveness of PrEP at individual and population levels. We identify and provide solutions to where and how collaborative interventions across public health, clinical, and community practice could address these challenges.

Depression and Suicide Literacy among Canadian Sexual and Gender Minorities.

The purpose of this study was to examine and compare depression and suicide literacy among Canadian sexual and gender minorities (SGM). Online surveys comprised of the 22-item depression literacy scale (D-LIT) and the 12-item literacy of suicide scale (LOSS) were completed by 2,778 individuals identifying as SGM. Relationships between depression and suicide literacy and demographic characteristics were evaluated using multivariable linear regression. Overall, SGM correctly answered 71.3% of the questions from the D-LIT and 76.5% of the LOSS. D-LIT scores were significantly lower among cisgender men and D-LIT and LOSS scores were lower among transgender women when compared to cisgender women. LOSS and D-LIT scores were significantly lower among SGM without a university degree (compared to those with a university degree) and among SGM from ethnic minority groups (compared to White SGM). D-LIT scores, but not LOSS scores, were significantly lower among Indigenous SGM compared to White SGM. The findings provide evidence of differences in suicide and depression literacy between SGM subgroups along multiple social axes. Interventions to increase depression and suicide literacy should be prioritized as part of a mental health promotion strategy for SGM, targeting subgroups with lower literacy levels, including cisgender men, transgender women, Indigenous people, racialized minorities, and those without a university degree.

Strategies to support HIV literacy in the roll-out of pre-exposure prophylaxis in Scotland: findings from qualitative research with clinical and community practitioners.

OBJECTIVES: Limited understanding of pre-exposure prophylaxis (PrEP), coupled with negative public discourse, are significant barriers to its introduction. What works to support PrEP awareness and broader HIV literacy among diverse communities in the context of biomedical HIV prevention remains unclear. This article considers how PrEP can be translated across diverse communities and what the HIV literacy challenges might be in the current context of PrEP provision. SETTING: We developed an HIV literacy informed community tool to support the roll-out of PrEP in Scotland. We undertook qualitative research with practitioners in urban and rural settings across nine Scottish health boards. PRIMARY OUTCOME MEASURE: To examine HIV literacy challenges in the context of PrEP provision. PARTICIPANTS: Interviews and focus groups with community (n=19) and clinical (n=13) practitioners working with gay and bisexual men and African communities were undertaken between March and October 2017 concerning PrEP support, stigma and HIV literacy. RESULTS: HIV literacy in the context of PrEP needs to consider more than the provision of individually targeted information. Practitioners identified and responded to stratified communities and social norms of knowledge, which influenced messaging, support and informed how practitioners enabled PrEP engagement and dialogue. Social barriers in HIV literacy, including structural stigmas relating to HIV and homophobia, shaped practitioner concerns and support for community members' willingness to engage with PrEP. CONCLUSION: Critical HIV literacy in the age of PrEP is a complex social practice. Attention needs to be paid to how information is provided and facilitates engagement, rather than simply what information is given.By exploring practitioner use of the Know about PrEP tool, we have shown how consideration of the patterns of access to services and information, the delivery of and support for engagement with PrEP information and the wider strategies employed to negotiate ongoing structural social barriers can support more equitable and diverse PrEP community conversations.

A systematic review of interventions addressing limited health literacy to improve asthma self-management.

BACKGROUND: Supported asthma self-management improves health outcomes. However, people with limited health literacy, especially in lower-middle-income countries (LMICs), may need tailored interventions to enable them to realise the benefits. We aimed to assess the clinical effectiveness of asthma self-management interventions targeted at people with limited health literacy and to identify strategies associated with effective programmes. METHODS: Following Cochrane methodology, we searched ten databases (January 1990 - June 2018; updated October 2019), without language restriction. We included controlled experimental studies whose interventions targeted health literacy to improve asthma self-management. Selection of papers, extraction of data and quality assessment were done independently by two reviewers. The primary outcomes were clinical (asthma control) and implementation (adoption/adherence to intervention). Analysis was narrative. RESULTS: We screened 4318 titles and abstracts, reviewed 52 full-texts and included five trials. One trial was conducted in a LMIC. Risk of bias was low in one trial and high in the other four studies. Clinical outcomes were reported in two trials, both at high risk of bias: one of which reported a reduction in unscheduled care (number of visits in 6-month (SD); Intervention:0.9 (1.2) vs Control:1.8 (2.4), P = 0.001); the other showed no effect. None reported uptake or adherence to the intervention. Behavioural change strategies typically focused on improving an individual's psychological and physical capacity to enact behaviour (eg, targeting asthma-related knowledge or comprehension). Only two interventions also targeted motivation; none sought to improve opportunity. Less than half of the interventions used specific self-management strategies (eg, written asthma action plan) with tailoring to limited health literacy status. Different approaches (eg, video-based and pictorial action plans) were used to provide education. CONCLUSIONS: The paucity of studies and diversity of the interventions to support people with limited health literacy to self-manage their asthma meant that the impact on health outcomes remains unclear. Given the proportion of the global population who have limited health literacy skills, this is a research priority. PROTOCOL REGISTRATION: PROSPERO CRD 42018118974.

Segmenting communities as public health strategy: a view from the social sciences and humanities.

On the 5th of May 2020, a group of modellers, epidemiologists and biomedical scientists from the University of Edinburgh proposed a "segmenting and shielding" approach to easing the lockdown in the UK over the coming months. Their proposal, which has been submitted to the government and since been discussed in the media, offers what appears to be a pragmatic solution out of the current lockdown. The approach identifies segments of the population as at-risk groups and outlines ways in which these remain shielded, while 'healthy' segments would be allowed to return to some kind of normality, gradually, over several weeks. This proposal highlights how narrowly conceived scientific responses may result in unintended consequences and repeat harmful public health practices. As an interdisciplinary group of researchers from the humanities and social sciences at the University of Edinburgh, we respond to this proposal and highlight how ethics, history, medical sociology and anthropology - as well as disability studies and decolonial approaches - offer critical engagement with such responses, and call for more creative and inclusive responses to public health crises.