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Experiences using and organizing HIV self-testing

Qin, Yilua,b,*; Han, Larrya,c,*; Babbitt, Andrewa; Walker, Jennifer, S.d; Liu, Fengyinge; Thirumurthy, Harshaf; Tang, Weiminga,e; Tucker, Joseph, D.a,g,h

doi: 10.1097/QAD.0000000000001705
EPIDEMIOLOGY AND SOCIAL
Free
SDC

Objective: HIV self-testing (HIVST) is now officially recommended by the WHO, yet much of HIVST evidence to date has focused on quantitative data and hypothetical concerns. Effective scale-up of HIVST in diverse local contexts requires qualitative data from experiences using and organizing HIVST. This qualitative systematic review aims to appraise and synthesize research evidence on experiences using and organizing HIVST.

Methods: We conducted a systematic search of seven primary literature databases, four gray literature sources, and reference lists reporting qualitative evidence on HIVST. Data extraction and thematic analysis were used to synthesize findings. Quality of studies was assessed using the Critical Appraisal Skills Programme tool. Confidence in review findings was evaluated using the Confidence in the Evidence from Reviews of Qualitative Research approach. The review protocol was registered (CRD42015027607).

Results: From 1266 potential articles, we included 18. Four studies were conducted in low-income countries, three in middle-income countries, 10 in high-income countries, and one in multiple countries. Generally, HIVST increased capacity to reach priority populations and expanded opportunities for service delivery. Self-testing was preferred to facility-based testing due to increased convenience and confidentiality, especially among stigmatized populations. HIVST decreased test-associated stigma compared with facility-based testing. HIVST generally empowered people because it provided greater control over individual testing needs. At the same time, HIVST rarely allowed husbands to coerce their wives to test.

Conclusions: This review suggests that HIVST should be offered as an additional HIV testing option to expand testing and empower testers. Adapting national policies to incorporate HIVST will be necessary to guide scale-up.

aUniversity of North Carolina Project-China, Guangzhou, China

bMedicine Department, Yale University School of Medicine, New Haven, Connecticut, USA

cJudge School of Business, Cambridge University, Cambridge

dUniversity of North Carolina Health Sciences Library, Chapel Hill, North Carolina, USA

eGuangdong Provincial Centre for Skin Diseases and STI Control (Southern Medical University Dermatology Hospital), Guangzhou, China

fDepartment of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, Pennsylvania

gUniversity of North Carolina School of Medicine, Chapel Hill, North Carolina, USA

hFaculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK.

Correspondence to Joseph D. Tucker, University of North Carolina Project-China, Number 2 Lujing Road, Guangzhou, China. E-mail: jdtucker@med.unc.edu

Received 8 August, 2017

Revised 27 October, 2017

Accepted 2 November, 2017

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Website (http://www.AIDSonline.com).

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Introduction

Despite the Joint United Nations Programme on HIV/AIDS (UNAIDS) 90–90–90 targets [1], only an estimated 60% of people living with HIV globally knew their status in 2016 [2]. This disappointment has spurred interest in expanding decentralized testing strategies [3,4] such as HIV self-testing (HIVST) [5]. The WHO defines HIVST as an individual collecting their own test specimen, performing an HIV test, and interpreting the result [5]. HIVST offers confidentiality and convenience, which may expand access among those who would not otherwise test [6]. Mathematical models [7] and several implementation pilots suggest that HIVST could expand HIV testing and save money. The WHO now recommends that HIVST be offered as an additional HIV testing approach [5].

However, there are unresolved questions about how self-testing can be scaled up in countries with diverse environments [8]. Adverse outcomes related to the social context of HIVST may influence the overall effectiveness of the approach [9]. These lingering doubts about HIVST have contributed to policies in Germany [10] and elsewhere [11] making HIVST explicitly illegal. Although many countries are re-examining policies now, only 40 countries currently have national policies that support HIVST [12].

Much of the existing HIVST social science research has focused on perceptions of self-testing [13–19] that may not reflect experiences. Examining HIVST experiences is important for three reasons. First, HIVST is more decentralized compared with facility-based testing, increasing the number of settings and potential risks of testing. Second, the unsupervised nature of HIVST introduces the possibility for coercion [20,21]. Third, HIVST social science research can capture experiences from marginalized individuals who may not be reached by conventional surveys [22].

A qualitative systematic review brings together data collected from individual qualitative research studies [23]. This method has been used to synthesize qualitative data and inform WHO guidelines [24–28]. This systematic review appraises and synthesizes qualitative research evidence on experiences using or organizing HIVST.

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Methods

Our methods were informed by methodology described in the Cochrane Handbook [29]. Our reporting of items is based on PRISMA guidelines [30].

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Search strategy

A comprehensive literature search was performed to identify qualitative studies of HIVST. The search was initially conducted in seven primary databases from each database's inception through 30 November 2015: MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, the Cochrane Library, Global Health, and Scopus. Additional searches were conducted on 25 February 2016 for gray literature and unpublished reports in Conference on Retroviruses and Opportunistic Infections, International AIDS Society, OpenGrey, and EThOS (British Library). An updated search was conducted in all resources on 17 November 2016. The search strategy was developed with input from members of the research team, and an experienced librarian conducted the searches. A more detailed search algorithm with subject headings and keywords can be found attached in supplementary material (S1, http://links.lww.com/QAD/B195).

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Screening and selection process

All citations were screened by two independent reviewers. Full texts were assessed for eligibility based on standardized inclusion criteria: presented primary research data, used qualitative methodology, evaluated direct experiences with HIVST, published in English, and not a thesis or dissertation. Discrepancies during each stage of screening were resolved after discussion and final input by a third reviewer. For the purposes of this review, direct experience with HIVST meant that study participants themselves received an HIVST or organized a program that provided HIVST services to other people.

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Data extraction

Basic study descriptors were extracted: study setting, year of study, population researched, research aims, study design, type of data collection, and study context (whether HIV self-test was performed outside of or within research context). Conclusions, themes, and primary data were extracted from articles. Data on hypothetical concerns, preferences, and perspectives were excluded.

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Synthesis

A framework thematic synthesis approach was used to analyze and synthesize the data [31]. All extracted data were collected in a spreadsheet and subjected to open coding using line-by-line analysis to develop preliminary descriptive themes. Inductive analysis of all themes developed into an axial coding framework with first, second, and third order themes. Each review finding was assessed using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) approach [24,32]. The CERQual approach provides a transparent method for evaluating qualitative evidence syntheses, similar to the GRADE approach for quantitative systematic reviews [33].

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Reporting

The protocol for this study was registered on PROSPERO, the International Prospective Register of Systematic Reviews (CRD42015027607).

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Results

Initial screening yielded 1266 potential articles, from which 185 were selected for full text review (Fig. 1). The 18 included studies examined research conducted in eight countries (USA, UK, Ethiopia, Malawi, South Africa, Canada, Kenya, India) with 15 studies focused on adults [34–48] and three on youths [49–51]. Seven studies were focused on key populations: six on MSM [34–37,41,46] and one on transgender individuals [40]. Four studies looked at the special population of healthcare workers (HCWs) [38,42,43,47], one study evaluated pregnant women [45], and five studies investigated partner-testing among couples [34,35,37,39,41]. Seventeen studies reported experiences using HIVST and one study reported experiences organizing HIVST [36]. Five studies were conducted in low-income countries (LIC) [38,39,42,47,48], two in a middle-income country (MIC) [43,45], 10 in high-income countries (HICs) [34–37,40,41,46,49–51], and one study spanned three countries (two LIC, one MIC) [44].

Fig. 1

Fig. 1

Table 1 presents a classification of HIVST themes based on synthesis of qualitative evidence. First-order themes were primarily descriptive and coded directly from the text line-by-line. Second-order and third-order themes provided higher level analysis that grouped findings into logical classifications.

Table 1

Table 1

Results are grouped under three main findings: first, HIVST increased capacity to reach priority populations; second, HIVST provides expanded opportunities for service delivery; and third, social and ethical considerations for implementation and scale-up of HIVST. Table 2 summarizes the review findings and the confidence rating of each finding. Study characteristics are presented in Table 3.

Table 2

Table 2

Table 3

Table 3

Table 3

Table 3

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Increased capacity to reach priority populations

HIVST demonstrated increased capacity to reach priority populations in a wide variety of settings. Most individuals noted that HIVST was more convenient and more confidential than facility-based testing.

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More convenient than facility-based testing

Individuals were able to employ HIVST in a way that catered to their own schedules and testing needs, offering a customized HIV testing experience that allowed for greater control over location and time [46]. MSM [46], transgender women [40], youths [50], and pregnant women [45] commonly described HIVST as convenient. To some, convenience meant no longer having to wait in lines, make appointments, or travel long distances to clinics [38,39,44,47,49–51]. To others, convenience came in the form of greater control over the speed, efficiency, and location of testing [37,39,43,45,46,49–51]. Individuals who organized HIVST for MSM similarly observed that these attributes reduced barriers to testing and allowed people from regions where getting HIV testing is difficult (e.g. rural areas) to access it [36].

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More confidential than facility-based testing

MSM [41,46], transgender women [40], youths [49–51], HCWs [38,42,43,47], and lay users [44] commented on better protection of privacy with HIVST compared with facility-based testing. In particular, HCWs [38,42,47] in Africa and transgender women [40] in the United States of America wanted to avoid the stigma of testing in a public context, with the former being concerned about workplace discrimination and the latter about gossip within the relatively small transgender community. Individuals from LICs [39,44], MICs [44,47], and HICs [40,51] described being judged for seeking out HIV testing at a facility. Facility-based testing in Scotland was sometimes associated with connotations of immorality, promiscuity, and living with HIV. Individuals organizing HIVST confirmed that sexual health service facilities continue to be stigmatized, and thus HIVST reached new populations that do not traditionally test because of fear [36].

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Reduced test-associated stigma

In several studies in which HIVST kits were provided for participants to bring home, dissemination in public places normalized HIV testing across multiple settings. One pilot program in the United States of America used vending machines to dispense kits, delivering them along with other nonstigmatized products and through a local vending machine [46]. Among heterosexual couples in Malawi that were given free access to HIVST kits, participants often described self-test kits as toothbrushes, normalizing the testing kits within their daily routines [39]. Peer and social networks played an important role in influencing youths to self-test [46]. Positive experiences with HIVST led HCWs in South Africa [43] and MSM in the United States of America [46] to say they would recommend HIVST to friends, colleagues, family, and partners. Individuals that recommended HIVST to partners commented that in some instances, the physical presence of self-test kits served as an ‘ice-breaker’ that facilitated discussions about health, fidelity, and HIV-related concerns that were otherwise difficult to raise [35,39]. Some MSM felt that they were more likely to stick together with partners that had agreed to self-test [37].

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Expanded opportunities for service delivery

HIVST facilitates a new testing paradigm in which the testing experience is uncoupled from a strictly medical environment, which provides opportunities for innovative and targeted service delivery.

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HIV self-testing brought HIV testing into new settings and contexts

Self-test kits could be obtained from a number of diverse venues, including vending machines [46], community centers [47], bars/clubs [35,49], pharmacies [43], and online [46]. HIVST was also used at a number of diverse locations, including at home [39,43,46,47,49], the supermarket [35], bars/clubs [35], in cars [37,46], at partners’ homes [35,37,51], and at work [35,37,42,51]. Some individuals took to carrying test kits with them regularly so they could be used at anytime, or ‘on the go’ [35,37,51]. HIVST was used amidst new contexts, such as prior to casual sexual encounters, or ‘hookups,’ among MSM in the United States of America [34] and antenatal screening for HIV among first trimester pregnant women supervised by auxiliary midwives in rural India [45].

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HIV self-testing facilitated partner-testing

Secondary distribution of HIVST kits to casual or long-term partners was explored among several populations: MSM [34,35,41], transgender individuals [40], heterosexual couples [39], youths [51], and HCWs [38,47]. This method was generally well received and allowed partners to provide support during HIVST in the United States of America, sometimes by providing a comforting presence before or while waiting for results [40] and other times after receiving a positive result [41]. The social support offered by testing with a partner was identified as a motivating factor to get tested for HIV [39,51], seek confirmatory testing [35], and adhere to ART [39]. Women in Malawi contrasted the ease with which they could encourage their husbands to self-test with unsuccessful attempts to get their husbands to attend facility-based HIV testing [39]. Serodiscordant couples used HIVST kits as monitoring devices [39]. Distribution of HIVST kits to partners was noted even in studies in which participants were not explicitly asked by researchers to distribute test kits to partners [40,46,47].

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HIV self-testing supplemented existing resources in the community and clinic to improve HIV care

HIVST supplemented existing resources in the community to provide a range of HIV services, including mental health counseling [35,41], confirmatory testing or retesting [34,35], and starting or re-entering ART [39]. Peer networks, community organizations, and LGBT groups were important for both promoting HIVST and encouraging follow-up care after HIVST among MSM [34,35,41], youth, [51], and heterosexual couples in Malawi [39]. Youths, in particular, indicated that there was a strong influence of people in their lives (peer, intimate partner, and family referents) on their decision to self-test [49,51]. HIVST programs in Malawi [39], Kenya [47], and India [45] trained community health workers to promote and support HIVST. The program in India collaborated with an antenatal clinic to provide HIV screening for pregnant women in their first trimester [45].

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Lay persons were trained to correctly operate and teach HIV self-testing

HIVST programs in HICs [35,40,46,49–51], MICs [43–45], and LICs [39,44,47] successfully trained lay people to either operate or teach HIVST. Operating HIVST refers to the process of unpackaging, appropriately collecting the specimen, and correctly interpreting the test result. This was particularly welcomed in countries where a lack of adequate trained human resources impedes access to HIV testing [45,47]. Members of the local communities in Kenya, Malawi, and South Africa were videotaped using oral and blood-based specimen HIVST kits and each type was described as easy to use [44]. Most participants correctly interpreted negative and positive HIVST results. HIVST kits were also described as easy and simple to use by youths [49,51], HCWs, pregnant women [45], MSM [35,46], transgender women [40], and heterosexual couples in Malawi [39]. High-quality instructions, such as clear wording, local translations (where necessary), pictorial aids, or live demonstration, were valued and facilitated correct operation of self-test kits [44,45,47,51].

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Social and ethical considerations for implementation and scale-up

HIVST led to feelings of empowerment through control of one's own testing experience and diagnosis. However, in the context of partner testing, this increased agency rarely was associated with coercion to test.

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HIV self-testing generally promoted agency, but sometimes generated coercion

HIVST was described as empowering for MSM [41,46], transgender individuals [40], HCWs [43,47], pregnant women [45], youths [51] and the general population in Kenya, Malawi, and South Africa [44]. Among youth populations, many had never previously used HIVST, stating that they would have gotten tested sooner if they knew it were an option [50] and that completing the process provided positive reinforcement [49,51]. Transgender women and MSM in the United States of America felt that HIVST allowed them to take ownership of their own serostatus through self-diagnosis and increased agency by providing a tool that allowed for continued self-monitoring [40,46]. Lay users in Kenya, Malawi, and South Africa similarly indicated that they planned to use HIVST for routine monitoring in the future after having a good first experience [44]. Increased agency also manifested as increased testing of partners, notably among MSM [35,37]. For women in relationships with underlying sex and power imbalances, the ability to bring HIVST into the household facilitated partner testing [39]. The introduction of HIVST allowed some couples to discuss topics that were previously difficult to bring up, such as fidelity, health, sexually transmitted infections, and HIV serostatus [35,37,39]. In several instances, HIVST led to disclosure of HIV status between participants and their partners [35,38,47]. At the same time, this increased agency was rarely associated with coercive testing. One study in Malawi noted that women were pressured by their husbands to receive HIVST [39]. These instances of coercive HIVST were situated in underlying sex power imbalances.

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HIV self-testing informed sexual decision-making

Many individuals liked that HIVST provided a mechanism to detect the HIV status of their partners [34,35,37,39–41]. MSM [34,35,37,41] and transgender women [40] used HIVST to screen partners and inform decisions about condom use. They also used HIVST to assess fidelity in their partners, a function also used by heterosexual couples in Malawi. Many individuals reported that their HIVST experience raised awareness about various aspects of sexual behavior, HIV knowledge, and general health and wellness [34]. HIVST created self-awareness about one's membership in a group at increased risk for HIV [43].

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Positive HIV self-testing results did not lead to adverse outcomes (suicide, violence), but in certain contexts had strong emotional impact

Studies that explored adverse outcomes resulting from HIVST examined violence during partner testing [35] and psychological distress associated with self-testing [35,41–43,46,50,51]. For instance, in one study in Kenya [47], ‘while health workers expressed concern about potential abuse of the self-test kit, by for example testing minors or housekeepers without their consent, no such incident was reported’. Anxiety associated with HIV testing itself in Malawi [42] and suicidality associated with an HIV-positive diagnosis in the United States of America and South Africa [41,43] often blended with and carried over to discussions of HIVST, but participants did not specifically distinguish between self-testing and facility-based testing or attribute these emotions specifically to HIVST. Generally, participants described HIVST as a low stress experience compared with facility-based testing [46,50].

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Discussion

Forward progress to achieve 2020 UNAIDs targets will require development of HIV testing services that are adaptable to a wide range of priority populations. HIVST priorities are likely to differ on the basis of HIV prevalence, with higher prevalence settings requiring more investment in services farther along the HIV care continuum. HIVST has been shown to reach populations that had not previously tested, with one study in Africa showing that between 20 and 30% of self-testers were first-time HIV testers [52]. Although individual user experiences varied, unifying themes applicable to many HIVST programs were identified.

Despite concerns about the availability of counseling and mixed views on the ability of HIVST to secure confirmatory testing and follow-up care, the preference for HIVST over facility-based testing was clear. Respondents consistently showed dissatisfaction with testing at clinics due to concerns about access and confidentiality. HIVST expanded access by providing greater autonomy over test conditions, including the timing, location, and setting. Although increased confidentiality brought in more individuals who might not otherwise test, it also presented challenges in educating patients who test negative about avoiding risky behaviors and informing patients who test positive about the importance of care and treatment.

We found that HIVST was associated with less test-associated stigma compared with facility-based testing. HIVST kits brought the experience of HIV testing into people's lives and homes, normalizing it and decreasing test-associated stigma. Given the importance of stigma as a barrier to expanding HIV testing around the world [53,54], this could facilitate scaling up HIV testing in many locations, especially low and middle-income countries that have substantial HIV test-associated stigma. Persistent stigma associated with the physical presence of HIVST kits may be further minimized by anonymizing kit packaging and incorporating user preferences.

Although HIVST generally increased agency, it was not commonly associated with coercive testing. This risk increased in the context of sex power imbalances in heterosexual couples [39]. This finding is consistent with quantitative studies from Malawi [22] and China [20,21] showing rare instances of HIVST-associated coercion. Our data suggest the potential for coercion directly related to HIVST, contrasting the interpretation of evidence from the WHO HIV Self-Testing Guidelines [5]. Further research on coercive testing is needed to better understand this potential harmful outcome. This emphasizes the need for accurate adverse event reporting among testers and their partners.

Our qualitative evidence synthesis has several limitations. First, many studies in our review were from heterosexual couples, MSM, and transgender individuals in HICs. At the same time, CERQual transparently reports data adequacy for each review finding (Table 2), allowing the reader to draw their own inferences about transferability. Further HIVST research among other vulnerable populations such as sex workers will be important to understand coercive testing. Second, only one of the identified studies included data from individuals organizing HIVST programs. Third, none of the identified qualitative studies assessed linkage to care. A previous quantitative systematic review of HIVST [55] also found no existing literature on issues related to seeking linkage to care. Fourth, none of the identified studies reported the price of HIVST kits. Finally, none of the identified qualitative studies assessed participant knowledge of the limitations of HIVST in the window period between HIV infection and the detection of antibodies. Future qualitative studies should consider follow-up of participants post-HIVST to examine outcomes along the entire cascade of HIV care.

Our systematic review has implications for research, policy, and programs. From a research perspective, our findings suggest the need for more extensive research on coercive HIVST and linkage to care. From a policy perspective, this systematic review can be used to inform the development of local and national HIVST guidelines. Given the WHO HIV Self-Testing Guidelines [5], many policymakers are now re-evaluating HIVST policies. In July 2017, the WHO announced that 40 countries have now incorporated HIVST in their national policies, with 48 other countries currently developing new HIVST policies. This represents significant progress from only 16 countries supporting HIVST 2 years ago [12]. A system to collate test results into a national repository will help governments better assess the role of HIVST in national HIV prevention and treatment programs. From the perspective of HIVST programs, our data may be useful for optimizing pilot HIVST sites, service delivery models, and strategies. At the same time, implementers should be certain that HIV rapid diagnostic test kits for self-testing are approved by regulatory authorities and quality-assured. There will unlikely be a single ‘one-size-fits-all’ HIV testing approach and the natural advantage of HIVST is that it could be adapted to a wide range of different settings. Our review findings provide practical details to enhance HIVST in diverse settings.

The current systematic review provides synthesized data on experiences of using and organizing HIVST. The advent of the self-test will usher in new opportunities and challenges for HIV testing programs. Our data confirm the importance of self-testing as a new tool that normalizes testing, decreases test-associated stigma, and expands HIV testing.

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Acknowledgements

We thank all staff members at SESH Global and the Guangdong Provincial Center for Skin Diseases and STI Control for their contributions. We thank Chongyi Wei for helpful edits on the article.

Author contributions: J.D.T., W.T., Y.Q., A.B., L.H., and F.L. conceived the study. J.D.T. and J.S.W. designed the search strategy. Y.Q., A.B., and J.D.T screened and selected articles. Y.Q., L.H., and A.B. extracted and synthesized data. L.H. drafted the article with input from J.D.T., Y.Q., H.T., W.T., A.B., F.L., and J.S.W. All authors critically reviewed and revised the article.

The current work was supported by the National Institutes of Health (National Institute of Allergy and Infectious Diseases 1R01AI114310 to J.D.T.); UNC-South China STD Research Training Centre (Fogarty International Centre 1D43TW009532 to J.D.T.); UNC Center for AIDS Research (National Institute of Allergy and Infectious Diseases 5P30AI050410 to J.D.T.); the UNC Chapel Hill, Johns Hopkins University, Morehead School of Medicine and Tulane University (UJMT) Fogarty Fellowship (FIC R25TW0093 to W.T., F.L.). The listed grant funders played no role in any step of this study.

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Conflicts of interest

There are no conflicts of interest.

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* Yilu Qin and Larry Han contributed equally to the article and are cofirst authors.

Keywords:

Confidence in the Evidence from Reviews of Qualitative Research; HIV self-testing; qualitative research; systematic review

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