Understanding empowerment and vulnerability through engagement with HIV self-testing among female sex workers in Blantyre, Malawi

My thesis presents a discussion of the concepts of vulnerability and empowerment in research exploring female sex workers’ (FSW) engagement with HIV Self-testing (HIVST). HIVST is regarded as an ‘empowering innovative approach’ to HIV testing; however, there are concerns that HIVST may generate unintended consequences, especially in the context of sex work. Despite optimism around HIVST, no studies exist to date exploring how HIVST ‘empowers’ FSW in settings constrained by political and structural barriers. There is a need to interrogate whether HIVST could increase vulnerability/empowerment among FSW given the existing barriers and the burden of responsibilities of HIV protection. I draw and reflect on a range of theoretical perspectives on sex work, power, vulnerabilities and empowerment and apply them to FSW’s interaction with HIVST in the context of Blantyre, Malawi. I aimed to explore how FSW engage with HIVST and the extent to which this engagement contributes to their vulnerability or provide opportunities for empowerment. I conducted my research in peri-urban Blantyre where HIVST was implemented as part of a large scale study. I used ethnography and participatory research methods to address the following three key research questions: 1) What constitutes FSW’s vulnerability and empowerment, including perceptions of HIV risk in the sex work environment? 2) How does the sex work context shape FSW’s experiences with HIVST and the meaning of empowerment? 3) How does HIVST impact on FSW’s lives in relation to HIV prevention, treatment and care? Overall, I found that FSW exercise limited power across their life course, although their narratives highlighted both their sense of agency and the societal structural forces shaping their decisions to engage and remain in sex work. Whilst FSW clearly exercised agency in entering sex work, this was done in a context of severely constrained choices shaped by gender relations and the global-local political economy. The delivery of HIVST has the potential to increase FSW’s decision making power over when and where to test for HIV. However, the specific power relations and vulnerabilities vary in sex work contexts because, for some, the power to decide to test was not increased; for others, feelings of insecurity and a sense of the need for retesting were amplified. High (re)testing rates among FSW indicate that knowledge of the risk of HIV infection was high, though not translated into HIV prevention. These findings challenge the current narrative that HIVST alone will reduce the HIV testing gap or increase access, treatment and care, and prevent onward HIV transmission. In conclusion, it is important to attend to the complexities of the political economy forces, public and public health discourses, gendered power relations, and FSW’s voices at the site of the intervention. Therefore, implementers should strategically reconsider the delivery model for HIVST, as testing in some sex work locations creates power dynamics leading to coercive testing, and sometimes resulting in resistance from some FSW. As this is the case, HIVST should be implemented in the context of efforts to build wider trusting relationships between providers and FSW and to reduce widespread stigma and unequal power relations

Uptake contexts and perceived impacts of HIV testing and counselling among adults in East and Southern Africa: A meta-ethnographic review

INTRODUCTION: HIV testing and counselling (HTC) interventions are key to controlling the HIV epidemic in East and Southern Africa where HTC is primarily delivered through voluntary counselling and testing (VCT), provider initiated testing and counselling (PITC), and home-based counselling and testing (HBVCT). Decision making processes around uptake of HTC models must be taken into account when designing new interventions. Counselling in HTC aims to reduce post-test risk taking behaviour and to link individuals to care but its efficacy is unclear. This meta-ethnography aims to understand the contexts of HTC uptake in East and Southern Africa and to analyse the perceived impacts of counselling-based interventions in relation to sexual behaviour and linkage to care. METHODS: We conducted a systematic literature review of studies investigating HTC in East and Southern Africa from 2003 -April 2014. The search and additional snowballing identified 20 studies that fit our selection criteria. These studies were synthesised through a thematic framework analysis. RESULTS: Twenty qualitative and mixed-methods studies examining impacts of HTC models in East and Southern Africa were meta-synthesised. VCT decisions were made individually while HBVCT decisions were located in family and community units. PITC was associated with coercion from healthcare providers. Low quality counselling components and multiple-intersecting barriers faced by individuals mean that counselling in HTC was not perceived to be effective in reducing post-test risk behaviour and had limited perceived effect in facilitating linkage to care. CONCLUSION: HBVCT is associated with minimal stigma and should be considered as an area of priority. Counselling components in HTC interventions were effective in transmitting information about HIV and sexual risk, but were perceived as ineffective in addressing the broader personal circumstances preventing sexual behaviour change and modulating access to care

Complexities and dilemmas in community consultation on the design of a research project logo in Malawi

BACKGROUND Community engagement on research design is widely highlighted as an important approach for ethical research. This article reports the experience of consulting with communities on the logo used for an influenza study in Malawi. The logo was designed for use on badges worn by study researchers, participant information sheets and other project documents, and could affect perceptions of the study and consequent engagement in the research. METHODS Four focus group discussions were conducted with populations targeted by the influenza study: pregnant women, people with HIV, mothers and community members. The focus groups incorporated a participatory matrix exercise focusing on key themes emerging from the discussions such as: attractiveness, comprehension, acceptability and suggestions for improvement. Findings from the focus groups were analyzed according to these key themes. RESULTS The consultation highlighted important benefits of discussion with communities on research design, including providing new perspectives and helping to avoid harm. For example, people living with HIV felt that one of the possible logos could increase stigma within communities. The experience also indicated potential challenges of consultation. In particular, there were contrasting perspectives among the groups, such that the consultation did not provide a clear answer about which logo should be selected. CONCLUSIONS Our experience adds to current evidence on community engagement by reporting on an area where there is less discussion of community consultation for design of a study logo. The consultation exercise reaffirmed the value of community engagement, but also the difficulty of relying on a brief consultation for decision-making in research design. Further ethical guidance is required on how to negotiate contradictory views during consultations

Perceptions of Research Bronchoscopy in Malawian Adults with Pulmonary Tuberculosis: A Cross-Sectional Study

Bronchoscopy is an established research tool in Malawi, enabling collection of pulmonary samples for immunological, pharmacological, and microbiological studies. It is, however, an invasive clinical procedure that offers no direct benefit to volunteering participants when used in a research capacity alone, and thus informed consent is essential. This study aimed to explore TB patients’ understanding of research bronchoscopy, what would motivate them to participate in research bronchoscopy, and their concerns, in order to inform consenting processes for future clinical studies. We used a qualitative research design. Two focus group discussions were conducted with community members and TB patients to understand their perceptions of bronchoscopy. Transcripts were coded by multiple co-authors and thematic content analysis was used to analyse main findings. We found that Malawian patients with pulmonary TB were willing to participate in a study using research bronchoscopy for health assessment and access to improved healthcare. We identified information of value to potential participants when consenting to that may lessen some of the anxieties expressed by participants. Patient and public involvement is essential to improve informed consent and institutional trust

“I wanted evidence that my status had changed, so that is why I tested”: experiences with HIV self-testing among female sex workers in Malawi

Maximising HIV testing among female sex workers (FSWs) is an established global health priority. HIV self-testing (HIVST) seems to have the potential to address issues of confidentiality, privacy and convenience among this key population. HIVST, however, may result in unintended consequences as its implementation unfolds in a complex sex work context characterised by unequal power relations, stigma and high HIV prevalence. This study aimed to explore the experiences of FSWs with HIVST in the context of retesting and antiretroviral usage in Blantyre, Malawi. We used an ethnographic approach to understand meanings and views around HIV self-testing and retesting. We found high levels of retesting, especially among those on antiretroviral, two of which received ‘false negative’ results. We identified three broad narratives: (1) retesting in response to experiences in the sex work context, (2) retesting driven by the desire to self-monitor HIV negative status, and (3) retesting in the hope of sero-reversion. The experiences of these women indicate that the implementation of HIV self-testing in the context of sex work is complex with potential for unintended harms such as coercive testing. HIVST programmes must include clear and appropriate messaging to reduce retesting while on ART and ensure effective strategies are in place to address FSW concerns and anxieties about the accuracy of their HIV positive test results

Perceptions of research bronchoscopy in Malawian adults with pulmonary tuberculosis : a cross-sectional study

Funding: Liverpool Integrated Clinical Academic Training Programme, experience at another institution (ADM); Wellcome Trust Clinical PhD Fellowship 105392/B/14/Z.Bronchoscopy is an established research tool in Malawi, enabling collection of pulmonary samples for immunological, pharmacological, and microbiological studies. It is, however, an invasive clinical procedure that offers no direct benefit to volunteering participants when used in a research capacity alone, and thus informed consent is essential. This study aimed to explore TB patients' understanding of research bronchoscopy, what would motivate them to participate in research bronchoscopy, and their concerns, in order to inform consenting processes for future clinical studies. We used a qualitative research design. Two focus group discussions were conducted with community members and TB patients to understand their perceptions of bronchoscopy. Transcripts were coded by multiple coauthors and thematic content analysis was used to analyse main findings. We found that Malawian patients with pulmonary TB were willing to participate in a study using research bronchoscopy for health assessment and access to improved healthcare. We identified information of value to potential participants when consenting to that may lessen some of the anxieties expressed by participants. Patient and public involvement is essential to improve informed consent and institutional trust.Publisher PDFPeer reviewe

Measuring sexual behaviour in Malawi: a triangulation of three data collection instruments

BACKGROUND: There is a need for valid approaches to measure sexual interactions to assess the impact of behavioural interventions and to predict the impact of behaviour changes. Different methods of asking about sexual behaviour often yield conflicting answers and men often report higher levels of heterosexual activity than women. To better understand self-reported sexual behaviour data and how best to collect it, we analyzed data collected as part of a larger project (ST IMPACTS) on the social and behavioural impact of introducing community-level HIV self-testing (HIVST) with counseling (semi-supervised with pre- and generic post-test counseling provided on delivery or collection of test kits) in an urban Malawian setting. METHODS: Information on sexual behaviour was collected from HIV self-testers over a three-month period. Three different methods were used: retrospective face-to-face interviews (FTFI); audio computer assisted self-interviews (ACASI) and a prospective coital diary. Both retrospective instruments were used before and after the three-month study period. Frequency and cross-tabulation, as well as scatterplots, were used for exploratory analyses. Chi-square tests were used to test for differences in proportions. Spearman's correlation coefficient was used to explore associations between both continuous and ordinal variables and Wilcoxon's paired sample and Mann-Whitney test was used to test for differences in such variables or between variables. RESULTS: There was reasonable agreement between the two retrospective methods although both yielded inconsistent answers e.g. with lower reported numbers of life-time sexual partners at the end than at the beginning of the study period. The diary method elicited higher reported levels of sex with multiple partners than both retrospective instruments which may be due to inadequate recall. Over the study period 37.4% of men and 19.7% of women reported multiple sexual partners using the diary. There was no clear relationship between reported sexual behaviour and HIV status (prevalence 9.6%). CONCLUSIONS: Diaries may therefore have higher validity for sensitive behaviour reporting and thus be the preferred method in similar African contexts in measuring sexual behaviours

Experience of social harms among female sex workers following HIV self-test distribution in Malawi: results of a cohort study

Background: In Malawi, female sex workers (FSW) have high HIV incidence and regular testing is suggested. HIV self-testing (HIVST) is a safe and acceptable alternative to standard testing services. This study assessed; whether social harms were more likely to be reported after HIVST distribution to FSW by peer distributors than after facility-based HIV testing and whether FSW regretted HIVST use or experienced associated relationship problems. Methods: Peer HIVST distributors, who were FSW, were recruited in Blantyre district, Malawi between February and July 2017. Among HIVST recipients a prospective cohort was recruited. Interviews were conducted at baseline and at end-line, 3 months later. Participants completed daily sexual activity diaries. End-line data were analysed using logistic regression to assess whether regret or relationship problems were associated with HIVST use. Sexual activity data were analysed using Generalised Estimating Equations to assess whether HIVST use was temporally associated with an increase in social harms. Results: Of 265 FSW recruited and offered HIVST, 131 completed both interviews. Of these, 31/131(23.7%) reported initial regret after HIVST use, this reduced to 23/131(17.6%) at the 3-month follow-up. Relationship problems were reported by 12/131(9.2%). Regret about HIVST use was less commonly reported in those aged 26–35 years compared to those aged 16–25 years (OR immediate regret—0.40 95% CI 0.16–1.01) (OR current regret—0.22 95% CI 0.07 – 0.71) and was not associated with the HIVST result. There was limited evidence that reports of verbal abuse perpetrated by clients in the week following HIVST use were greater than when there was no testing in the preceding week. There was no evidence for increases in any other social harms. There was some evidence of coercion to test, most commonly initiated by the peer distributor. Conclusions: Little evidence was found that the peer distribution model was associated with increased levels of social harms, however programmes aimed at reaching FSW need to carefully consider possible unintended consequences of their service delivery approaches, including the potential for peer distributors to coerce individuals to test or disclose their test results and alternative distribution models may need to be considered

Coercive public health policies need context-specific ethical justifications

Public health policies designed to improve individual and population health may involve coercion. These coercive policies require ethical justification, and yet it is unclear in the public health ethics literature which ethical concepts might justify coercion, and what their limitations are in applying across contexts. In this paper, we analyse a number of concepts from Western bioethics, including the harm principle, paternalism, the public interest, and a duty of easy rescue. We find them plausible justifications for coercion in theory, but when applied to case studies, including HIV testing in Malawi, vaccine mandates in South Africa, and prohibitions of antibiotic use in livestock in the EU, their limitations become clear. We argue that the context-specificity of ethical justifications for coercion has been overlooked, and there is more work needed to identify context-relevant ethical justifications for coercive policies in various settings and for various populations, rather than relying on universalising Western bioethical justifications across all contexts

Perceive impacts of HTC in relation to sexual behaviour and linkage to care.

<p>Perceive impacts of HTC in relation to sexual behaviour and linkage to care.</p