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“You have a self-testing method that preserves privacy so how come you cannot give us treatment that does too?” Exploring the reasoning among young people about linkage to prevention, care and treatment after HIV self-testing in Southern Malawi

“You have a self-testing method that preserves privacy so how come you cannot give us treatment... Background: Young people, aged 16–24, in southern Malawi have high uptake of HIV self-testing (HIVST ) but low rates of linking to services following HIVST, especially in comparison, to older generations. The study aim is to explore the barriers and facilitators to linkage for HIV prevention and care following uptake of HIV self-testing among young Malawians. Methods: We used qualitative methods. Young people aged 16–24 who had received HIVST; community-based distribution agents (CBDAs) and health care workers from the linked facilities were purposively sampled from two vil- lages in rural southern Malawi. Results: We conducted in-depth interviews with thirteen young people (9 female) and held four focus groups with 28 healthcare workers and CBDAs. Young people strongly felt the social consequences associated with inadvertent disclosure of HIV sero-status were a significant deterrent to linkage at their stage in life. They also felt communication on testing benefits and the referral process after testing was poor. In contrast, they valued encouragement from those they trusted, other’s positive treatment experiences and having a “strength of mind”. CBDAs were important facilitators for young people as they are able to foster a trusting relationship and had more understanding of the factors which prevented young people from linking following HIVST than the healthcare workers. Young people noted contextual barriers to linkage, for example, being seen on the road to the healthcare centre, but also societal gendered barriers. For example, young females and younger adolescents were less likely to have the financial independence to link to services whilst young males (aged 19–24) had the finances but lacked a supportive network to encourage linkage fol- lowing testing. Overall, it was felt that the primary “responsibility” for linking to formal healthcare following self-testing is shouldered by the young person and not the healthcare system. *Correspondence: lisaharrisonwk@gmail.com Department of International Public Health, Liverpool School of Tropical Medicine, Liverpool, UK Full list of author information is available at the end of the article © The Author(s) 2022. 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The Creative Commons Public Domain Dedication waiver (http://creativecom- mons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 2 of 10 Conclusions: Young people are happy to self-test for HIV but faced barriers to link to services following a self-test. Potential interventions for improving linkage suggested by this analysis include the establishment of youth-friendly linkage services, enhanced lines of communication between young people and healthcare providers and prioritising linkage for future interventions when targeting young people following HIVST. Keywords: Adolescents, Young people, HIV self-testing, Malawi, Linkage, Community-based health Background International (PSI) a locally based international NGO In the past decade, public health strategies in Sub-Sahara working on the ground through community-based dis- Africa (SSA) have focused on increasing young people’s tribution agents (CBDAs) on short term contracts, who access to HIV testing and treatment services because distribute the HIVST kits to people of all ages in the com- of the high HIV incidence and low uptake of testing in munity. Whilst distributing these tests the CBDA’s advise this sub-group [1, 2]. Adolescence is widely recognised and give information to all users on how to link to formal as a period of physical and mental development, a time health services for confirmation testing, however they are of testing boundaries, increasing independence and risk- not trained in professional post-test counselling. Included taking, which elevates their vulnerability to HIV infection in the HIVST kit is a referral card which all users present at [3–5]. the formal health services. Malawi has a young and growing population. In 2018, Despite the high acceptance of HIVST, young people in a fifth of the population was aged 15–24 years and nearly Malawi are less likely to link to formal health services post- 32% of new HIV infections occurred in this group and HIVST [14, 15]. This creates a treatment gap between the a majority among female adolescents [6–8]. Young peo- adult and younger population evidenced in 2016 where ple in Southern Malawi have an increased vulnerability 41% of HIV positive adolescent and young Malawian to HIV as they are less likely to use condoms and more people aged 15–24 were aware of their status and receiv- likely engage in sexual activity at a younger age [8]. Addi- ing Antiretroviral Therapy (ART) in comparison to of 69% tionally, pre-marital sex is strongly disapproved of which adults [11]. Reported barriers for young people to access- creates a “culture of silence” whereby the negative con- ing general sexual and reproductive health (SRH) services sequences of sex are emphasised so young people fear in Malawi include; fear of HIV-related stigma and dis- discussing sexual health issues with their parents or peers crimination, the lack of confidential and “youth-friendly’ [9]. Myths and misconceptions about HIV transmission SRH services and the associated cost of transport [16–21]. and treatment spread among adolescents and further Reportedly, receiving STI treatment and therefore keep- elevate HIV risk [10]. There are multiple reasons why ing their STI status private is a motivation for young young women and girls in Malawi experience this high Malawian people to access sexual health services as this HIV burden including being more likely to experience preserves their social status in the community [17], the sexual violence, intergenerational relationships and expe- same hasn’t yet been revealed, however, for young people’s riencing a younger age of sexual debut and marriage than reasoning in linking to HIV services. The U = U (Undetect- their male counterparts [9]. Furthermore, adolescents able = Untransmittable) campaign is a powerful message in Malawi experience lower HIV testing coverage then for people living with HIV (PLHIV) to encourage linkage their adult counterparts, exemplified in a 2015–16 sur - to post-testing services and adherence to treatment [22]. vey where 79% of adults (over 24 years) had ever received Yet, young people in Malawi may not have knowledge of HIV testing and results in comparison to only 40.4% of this campaign as in 2016, just 41% of women and 44% men adolescents (15–19 years old) [11]. (aged 15–24) had a “comprehensive knowledge of HIV”— Reaching young people with HIV testing and preven- which did not include knowledge of the U = U campaign tion and care services is a priority of the Malawi HIV and [8]. AIDS Strategy [12]. HIV self-testing at home has played a We investigated self-tested young people’s perceptions key role in increasing testing uptake in this group [1, 13]. on the barriers and facilitators to linking to services after Choko et al. (2015) found that adolescents in Malawi, had HIVST. the highest uptake of HIVST over a 2-year period, due to increased confidentiality, convenience and ease of use and 56% of users, of all ages, linked to treatment [13]. As a result of this data, HIVST for young people became a key focus in Malawi for the HIV Self-Testing Africa (STAR) Initiative with implementation led by Population Services Har rison et al. BMC Infectious Diseases (2022) 22:395 Page 3 of 10 an in-depth exploration of their individual perspec- Methods tives in relation to their underpinning characteristics A cross-sectional, inductive, qualitative approach was and beliefs [23]. Furthermore, as this involved discus- utilised to examine young people’s perceptions about the sion of sensitive topics like HIV testing, a focus group reasons for linking, or not linking, to confirmatory test - discussion would likely inhibit responses about per- ing and treatment after receiving a positive self-screen sonal behaviour due to the lack of confidentiality. FGDs result. was chosen to explore the collective perspectives of the HIVST suppliers; healthcare workers and CBDAs (in Study setting separate FGD’s), to additionally observe any conflicts or From the most recent national demographic health agreements between the villages and professions [25]. survey in 2015–16, the southern region of Malawi has IDIs and FGDs were held in the participants’ preferred the nationally highest HIV prevalence [8]. Two villages languages of Chichewa or Chiyao by a research assistant within the Southern Machinga district were chosen for (male, aged 25) who had previously lived and worked in sampling locations as unpublished process data from the area to further build trust with the participant but STAR (2018) demonstrated that young people who self- also impart contextual knowledge to the main researcher tested from the Southern Machinga district had com- (LH, female aged 26), who took observational notes and paratively low rates of linkage to services. Village 1 was made further iterative enquiries to further explore previ- purposively chosen to sample participants because it ously unexpected topic areas. A semi-structured inter- had the lowest rates of linkage in the district and, there- view topic guide was used to guide discussions, with open fore, likely held the richest data. Village 2 in the same questions such as “What are your opinions of local health district was chosen for comparison as it was the closest facilities and how they treat young people?” and further village with higher rates of linkage to Village 1. solution-orientated questions, for instance “if you could organise how young people link to services after HIVST, Sampling strategy what would you do?”. The topic guide also included meth - To approximate information saturation in the short ods of free-listing, ranking and scenarios as described by time frame provided, rapid appraisal methods were Palmer [24]. Free listing involved the participants listing used with swift participation sampling rather than any reasons young people would link to services (or not), other naturalistic methods [23, 24]. Young people were these were then ranked by perceived importance to give sampled purposively, where predicted information-rich means of comparison. These reasons and rankings were participants were recruited by local CBDAs, who would referenced for further exploration within the interviews. verbally describe the study so the young people could All participants were presented with hypothetical sce- provide informed consent. Young people aged 16–24 narios and asked to describe what would happen in their were sampled, with a deliberate majority of females and community, for example, “What would a young person efforts to include younger adolescents (below 18  years do if they went to a health facility to get treatment and old). To avoid stigma associated with study-participa- they saw someone else their age?”; “Would it be different tion, participants were not required to reveal their HIV if they knew them?”. This methodological triangulation status or whether they linked to services post-HIVST. helped build rapport, facilitated further exploration and Healthcare workers and CBDAs were sampled from safeguarded the data’s trustworthiness [26, 27]. the village’s health centres, balanced in age and gender. Included healthcare providers were of the same cadre to lessen professional hierarchy bias. Data analysis A thematic framework approach was used to analyse the qualitative data and observe differences between par - Data collection ticipants’ perspectives. After transcription and transla- Rapid appraisal methods; such as in-depth interviews tion of data the lead researcher (LH) first familiarised (IDI) with purposive opportunistically sampled par- and immersed herself in the data. From this immersion, ticipants and focus group discussions (FGD) of key a coding framework was developed using a priori/deduc- informants, aim to assess and address a community’s tive codes and each IDI and FGD was double-coded after health needs within a limited time frame to give prac- the transcripts had been imported in NVivo 11 (QSR- tical recommendations and was therefore chosen to Australia). Categories of coded data were grouped to approximate information saturation in the short time reveal overarching themes. Participant’s responses were frame provided [24]. compared between villages, young people, healthcare In-depth interviews were adopted with the workers and CBDAs. Data triangulation was also strati- 16–24-year-old study participants as these allowed for fied by the socio-demographic characteristics of; age, Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 4 of 10 The contextual impact on the assurance of confidentiality sex, village and HIV status where the latter had been dis- Most participants agreed that young people would closed voluntarily. not link to formal health services following a positive Ethical approval for this project was given by the Liv- HIVST result due to the anticipated negative social con- erpool School of Tropical Medicine (LSTM) on the 29th sequences of inadvertent disclosure of their HIV status. March 2018 and in Malawi by the College of Medicine Interestingly and in contrast to the majority, three young Research and Ethics Committee (COMREC, Protocol people (2 female and 1 male, aged 23–24) from Village 1 number:P.01/16/1861) on the 13th April 2018 under described how early linkage to confirmatory testing and research with the STAR (HIV Self-Testing Africa Ini- subsequent treatment preserved their serostatus privacy; tiative) affiliated with Malawi-Liverpool Wellcome Trust (MLW). “You try to hide it from people because when you wait for you to be sick people get to realize what is Results really wrong with you” (Male, 23) We included 41 participants (see Table 1). Thirteen IDI’s A healthcare provider from Village 1 described that were conducted with the young participants and an addi- the facility held youth-specific days for HIV services sup - tional 28 individuals participated in four FGD’s with two ported young people’s access to post-HIVST services groups of healthcare workers and two groups of CBDAs due to the social support from their peers and youth- from each village. Although the young study participants friendly health providers. Four of the seven young peo- were not required to reveal their HIV status, 12 out of 13 ple and CBDAs from Village 1, however, narrated that participants voluntarily disclosed this during the IDIs. By this approach as an obstacle as it is not effective in safe - chance, most young people sampled from Village 1 had a guarding their privacy in their serostatus or that they HIV + status whereas as the majority from Village 2 had a were accessing post-HIVST services, and preferred using HIV − status. healthcare centres further away but with less visible Confidentiality and not wanting to disclose HIV status, routes; social support, communication, and attitudes/percep- tions toward the health facilities emerged as key themes “When people in the village see [young people] going on factors influencing linkage to healthcare following a on that day, they definitely judge they are going for positive HIVST result at home for young people. treatment and mock them” (Female, 23) Table 1 Participants demographic characteristics Categories/sub categories Data collection approach In-depth Interviews (n = 13) Focus group discussions (n = 28) Population group Young HIV self-testers Health Care Workers (16) Community Based Distributing Agents (12) Location Village 1 7 7 Village 1 (6) Village 2 6 9 Village 2 (6) Sex Female 9 8 8 Male 4 8 4 Age 16–19 3 N/A N/A 20–24 10 0 2 25–30 8 3 30 + 8 7 HIV status HIV-Positive 7 N/A N/A HIV-Negative 6 Unknown 1 Totals 13 16 12 Har rison et al. BMC Infectious Diseases (2022) 22:395 Page 5 of 10 In conflict with this position, nearly all young peo - them to not to go to the hospital… Because they say ple ranked the long distance to healthcare centres and the virus has no cure (Female, 24)” associated transport costs as a highly important barrier Both village healthcare centres were said to have to linkage. One CBDAHIVST provider from Village 1 “expert client” volunteers in the facilities who were pre- described young people’s frustration on the lack of a con- sented to patients as “treatment role models”. The health - venient and private approach for linking to services for care workers and some CBDAs were convinced that those self-testing HIV positive; expert clients had an important role to play in facilitating “[Young people] tell us that ‘you have a self-testing health-service linkage and treatment adherence among method that preserves privacy so how come you HIV self-tested youth; cannot give us treatment that does too?’” (Village 1 “When youths see these HIV positive people living CBDA FGD Participant) happy and healthy, they get encouraged and see no reason of isolating themselves from treatment.” (Vil- lage 1 healthcare worker FGD) Availability of social support and trusting relationships In contrast, “expert clients” were ranked of low impor- The presence or absence of social support from a trusted tance by the young people, and were even described as individual was described as an important factor for youth “ineffective” by a healthcare worker in Village 2, who nar - to access confirmatory testing and treatment following rated that no expert client is under 25-years-old and their HIVST. There were conflicting views on parental sup - ‘counselling’ is only confined to the health facility. port; three young females (aged 16–22) across the vil- lages’ stated parents were supportive as they are “wise” whereas three young people in Village 2 (two males and Communication between CBDAs, healthcare workers one female aged 18–23) expressed concerns that their and NGO staff parents may compromise their unwillingness to disclose The most notable difference between the villages was the their serostatus publicly. relationship between healthcare workers, CBDAs and Eleven young people, both CBDA and the village 2 NGO staff. In Village 2, this relationship was a facilita - healthcare FGD participants, observed that CBDAs were tor, but a barrier in Village 1. A healthcare worker from well placed to foster trusting relationships with young the Village 1 health centre lamented that the CBDAs people and could encourage accessing formal health ser- didn’t counsel young people when they received a posi- vices following HIVST because they lived and worked in tive result, even though CBDAs are trained in HIVST the community and could be accessed in the village for distribution, not professional post-test counselling. This advice without young people experiencing fear of inad- suggests that the CBDAs’ role was not fully explained vertent HIV status disclosure; to the healthcare workers in Village 1. A young woman “Even when [my friend] has some health problems, from Village 1 described how the fractured relationship he consults the CBDA, I even saw him yesterday between CBDAs and healthcare workers hindered her going to the CBDAs house” (Male, 20). access to post-HIVST services when she presented at the facility; Despite their placement in the community, CBDA’s were perceived as confidential figures as the young peo - “[The healthcare workers] didn’t believe that I have ple had observed them talking to their peers and their done self-testing, [my CBDA] gave me a referral peer’s serostatus was not revealed within the community. card, I said I don’t see any reason to not believe me.” Four young people (two male and two females, aged (7FYP, 21) 18–23) described peer support as a facilitator to linkage The healthcare workers in Village 2 described how they following HIVST but these were often informal and with experienced a similar scenario and the NGO organised a no mention of sexual partners. For example, one young meeting to explain the roles of the professionals to each self-tester from Village 1 (Female, 21) narrated that some other and confirmed referral methods. In this meeting, it young PLHIV created a secret support group to encour- was decided that mobile phones would be used to sup- age each other’s treatment adherence. However, many port referrals of young HIV self-testers between CBDAs young people and participants in the four FGDs dis- and healthcare workers based at a facility. However, a cussed how the general perception that HIV treatment is meeting of this nature had not taken place in Village 1. not a cure leads to a fatalistic attitude even among peers; Participants in all the four FGDs desired more inter- “[Young people] don’t go because of peer influence, action and communication between CBDAs and health when they disclose to their friends, [they] influence Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 6 of 10 workers to ensure seamless referrals and to prevent and financial security. Additionally, young women future tension, as articulated; described how they were less able to afford any trans - port costs as they held less lucrative jobs living with “We were not involved in any of the meetings their parents; which the project implementers conducted with the CBDAs, so we had no clue on what role we were “A boy would emigrate and work at tobacco farms playing and what role were the CBDAs playing.” to buy a bike while a girl wouldn’t” (Female, 23) (Village 1 Healthcare worker FGD Participant) More females stated having “strength of mind” as Furthermore, this lack of communication between the an important facilitator. This may relate to a CBDA’s healthcare providers, CBDAs and self-tested young peo- observation in Village 1 that females are more likely to ple contributes to a failure in recognising young people’s have a close relationship with their parents at home, barriers to post-HIVST services linkage. The young peo - disclose their status and receive encouragement to have ple and CBDAs ranked the following four factors of high the ‘strength of mind’ to link to formal health services. priority for linkage (special treatment days, distance as For the young men, the story was different as illustrated barriers and encouraging CBDAs and “strength of mind” in a quote below; as facilitators) whereas the healthcare workers ranked “It is really difficult for young people, mostly boys, these factors as low priority. they take time to disclose their results to their par- ents, they are hard to convince them to accept it, it Role of health centres in promoting linkage is like you’re working with a lion” (Village 1 CBDA Seven young people and all of the FGD participants FGD Participant) ranked healthcare services as the most important facili- In terms of age, study participants falling within the tator to ensure linkage to confirmatory testing and HIV 16–19 and 20–24-year-old age groups held similar per- treatment and care. The need for a confirmatory test was spectives on linking (or not) to post-HIVST services. said to encourage young people to link in order to dis- However, this is likely due to the lack of comparative pel anxieties on whether young self-testers performed data as only three participants were aged 16–19, and the self-test accurately. Furthermore, eight young people they seemed to find it difficult to fully articulate their stated they, and other peers, linked to health centres after reasoning for linking to services or not. One young per- observing HIV symptoms and to “stay healthy”. No young son from Village 2 (aged 23) described how adolescents person mentioned the U = U campaign as an incentive find the associated travel costs a larger obstacle than for linkage, however, this was also not probed for. their older counterparts as they are more likely to be The FGD participants described the healthcare work - financially dependent on their parents. Additionally, a ers providing confidential counselling and treatment as healthcare worker noted how the cultural perceptions another facilitator. Most young people described health- of adolescents contribute towards undermining agency care workers as respectful or “welcomed them properly”. to make independent decisions; Noticeably, young people and healthcare workers both described this respect as reciprocal; “According to our Malawian culture, a person who is sixteen is still a little child…, he needs a guard- “It depends on the attitude of the [young] person …. ian to guide him” (Village 1 Healthcare worker We don’t shout at them but on the issue of respect it FGD Participant) depends on their attitude (Laughter) (Pause) Accord- ing to our job and hospital rules we still respect [by The village of residence had a bearing on the ability not shouting or getting angry with] them whether to link to services following HIVST. A major differ - they respect us or not” (Village 2 Healthcare worker ence between the villages was that young people from FGD Participant) Village 2 described living a “sexually-risky” lifestyle as a driver to link to post-test confirmatory testing and treatment services as illustrated in this quote; Influence of demographic characteristics on linkage When the perspectives were stratified by gender, it was “Most male young people who go to the lake earn observed that young males were more concerned with huge amounts of money which influence them to the impact on their societal status in the community indulge in sexual relationships with all kinds of or loss of sexual partners from a potential inadvert- people and when they test themselves Negative ent HIV status disclosure during linkage. In contrast, that’s when they come for verification” (Village 2 young females were afraid of the social consequences CBDA FGD Participant). in terms of losing potential future marriage proposals Har rison et al. BMC Infectious Diseases (2022) 22:395 Page 7 of 10 This “sexually-risky” lifestyle is likely related to the [34–36]. However, this study showed a lack of commu- available income from fishing activities in Village 2, and nication between the young people and the healthcare not in Village 1, so young men from this village were workers. In Kenya, a study reported that having stake- more likely to engage in transactional sex. Furthermore, holders and a young person’s “advisory group” involved more young people in Village 1 discussed issues relat- in the planning of treatment distribution, improved link- ing to travel “visibility” as there is a single route to the age by 41% [37]. Therefore, this should be a priority in nearest health-centre which the local community lives future HIVST implementation to increase young people’s alongside. Meanwhile in Village 2, there are multiple, less linkage to post-HIVST health services. visible routes to the health facility. As with previous findings, [18, 38], this study also highlighted how CBDAs were motivators and preferred Discussion by young people because they were trusted and lived in This study is one of few to describe young people’s per - the villages with the young people, whereas this trust in ceptions of barriers and facilitators to linking to services healthcare professionals was only experienced by those following HIVST. Similarly to Malawi adults and echoing who linked to services. previous findings, confidentiality and the self-preserva - In this study, ‘expert clients’ roles were described as tion of their serostatus pervaded young people’s reason- confined within the health facilities with a limited role ing for linking to post-HIVST services [18, 28]. This was in the community. This is a lost opportunity, as multi - gendered and affected by young people’s age, reiterating ple studies [21, 29, 39] have reported how integrating Hatchet et al. (2012) [29], as adolescents and young males peer supporters, especially PLHIV, into the healthcare were less likely to disclose their status to others and so system during follow-up visits can be especially effec - experience less support in linking to post-HIVST ser- tive in increasing young people’s linkage. Hence, they vices. Our finding that young people emphasized having could effectively promote linkage for the young people by “strength of mind” as a facilitator highlights how young working in conjunction with the CBDAs in the commu- people feel expected to shoulder the burden of linking to nity. Expert clients and/or CBDAs could also provide a formal healthcare services by overcoming a multitude of means of transport which has also been found to increase barriers. linkage for young people [40, 41] and help to improve An unexpected barrier was that of poor communica- communication between those in the community and tion/relationship between CBDAs working in the com- healthcare providers based at the referral facility. munity distributing HIVST kits and the healthcare workers based at a clinic who provide follow-up services. Methodological limitations This finding shows a “fragmented” approach to imple - Using CBDA recommendations for purposive sampling mentation, with a focus on increasing HIV testing uptake may have created a sample bias towards the young peo- but little emphasis on subsequent linkage to post-HIVST ple’s positive CBDA descriptions as the CBDAs likely services like confirmatory testing or treatment. This lack chose participants with whom they had a positive rela- of joined up thinking can negatively impact sexual health tionship. Furthermore, there was an unintended location outcomes [30]. Community health programmes that bias whereby most young people sampled from Village 1 effectively work with close-to-community providers have disclosed a HIV + status and in Village 2 a HIV − status. been shown to successfully reach pregnant adolescents or All the young PLHIV had linked to post-HIVST services young people who were lost to follow-up from HIV care, and as such their perspectives and experiences may have by building on the important interface role that close to been different from those of the individuals who failed to community providers have between the health system link. Most of the HIV negative young people’s perspec- and the communities they serve [31, 32]. Deliberately tives were based on other’s experiences or hypothetical aligning tasks to national community-health programmes thinking. This lack of comparison with experiential data is likely to ensure improved community support to post- was mitigated through the triangulation of data from dif- test linkage in adolescents during a period when interna- ferent sources and the range of participants provided a tional funding for bespoke support is declining [31–33]. holistic view of linkage reasoning from the HIVST supply Our findings on the importance of the CBDA cadres give and demand perspectives for young people. further evidence how it is vital to understand the local Despite the sensitive nature of the discussions with the context to address issues of professional distrust or unfa- young people, the trust gained with the researchers in the miliarity which affect upon service delivery performance limited time frame is evidenced through the majority of and impact [31, 32]. participants self-disclosure of their serostatus. This may Youth participation should be a programme priority to be due to the researchers being balanced in gender and of increase young people’s access and use of SRH services a relatively younger age, 25 and 26. Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 8 of 10 Availability of data and materials Conclusions The datasets used and/or analysed during the current study are available from In conclusion, HIVST provides confidential and con - the corresponding author on reasonable request. venient testing which increases uptake among young people. However, linking to confirmatory testing and Declarations treatment following a self-test at home remains a Ethics approval and consent to participate daunting challenge as the onus of responsibility to link Ethical approval for this project was given by the Liverpool School of Tropical rests on the young people and their ability to navigate Medicine (LSTM) on the 29th March 2018 and in Malawi by the College of multiple and complex barriers. This study shows the Medicine Research and Ethics Committee (COMREC) on the 13th April 2018 under research with the STAR (HIV Self-Testing Africa Initiative) affiliated with importance of communication between target ben- Malawi-Liverpool Wellcome Trust (MLW ). eficiaries and the different health providers involved within a health intervention delivered at community Consent for publication As part of consenting to take part in the study, participants consented to level. It also highlights young people’s reasoning for publication of the data, with assurance of their anonymity as all personal iden- linking to services post-HIVST, including the differing tification has been removed from the data set. This data is readily available contextual and gendered perspectives, which future upon request and has been stored with LSTM and MLW for 5 years after the completion of data analysis. Malawian policy makers and implementers can use to implement effective interventions with a targeted Competing interests response to encouraging different groups of young The authors declare that they have no competing interests. people’s linkage post-testing. Implementing these rec- Author details ommendations in the national scale-up of HIVST in Department of International Public Health, Liverpool School of Tropical Malawi would maximise the benefits of young people’s Medicine, Liverpool, UK. Malawi Liverpool Wellcome Trust Clinical Research Programme, Blantyre, Malawi. School of Public Health and Family Medicine, high uptake of HIVST; so more young people receive College of Medicine, University of Malawi, Blantyre, Malawi. Depar tment treatment to achieve viral suppression and, ultimately, of HIV Prevention, Population Services International, Blantyre, Malawi. Depar t- reduce the national incidence and prevalence of HIV in ment of Clinical Research, London School of Hygiene and Tropical Medicine, London, UK. Population Services International, Johannesburg, South Africa. Malawi. Department of Global HIV, Hepatitis and STIs Programmes, World Health Organization, Geneva, Switzerland. Zambia AIDS Related Tuberculosis Project, Lusaka, Zambia. Clinical Sciences Department, Liverpool School of Tropical Abbreviations Medicine, Liverpool, UK. Tropical Infectious Diseases Unit, Royal Liverpool ART : Antiretroviral therapy; CBDAs: Community-based distributing agents; University Hospital, Liverpool, UK. FGD: Focus group discussions; HIVST: HIV self-testing; IDI: In-depth interviews; MLW: Malawi-Liverpool Wellcome trust; PLHIV: People living with HIV; SSA: Received: 1 March 2022 Accepted: 2 March 2022 Sub-Saharan Africa; STAR : HIV self-testing Africa Initiative; WHO: World Health Organisation. Acknowledgements The authors would like to acknowledge the young people, community-based distributing agents and health care workers who gave their time to be inter- References viewed. Thanks to the help and support from the staff at Population Services 1. World Health Organization. Consolidated guidelines on HIV testing International in Malawi Blantyre in facilitating the planning of this project, the services for a changing epidemic. 2019. Available at: https:// www. who. staff at the Liverpool School of Tropical Medicine and the Malawi-Liverpool int/ publi catio ns- detail/ conso lidat ed- guide lines- on- hiv- testi ng- servi ces- Wellcome Trust for their advice, especially the research assistant, Henry Sam- for-a- chang ing- epide mic. (Accessed 10 April 2020). bukansi whose contributions in transcribing, transcription and support during 2. UNICEF. Children and AIDS: Sixth Stocktaking Report, 2013. 2013. data collection was invaluable. Available at: https:// www. unicef. org/ publi catio ns/ index_ 70986. html. (Accessed: 21st June 2018). About this supplement 3. Houle B, Mojola S, Angotti N, et al. Sexual behavior and HIV risk across This article has been published as part of BMC Infectious Diseases Volume 22 the life course in rural South Africa: trends and comparisons. AIDS Care. Supplement 1 2021: Innovating with HIV self-testing for impact in southern 2018;30(11):1435–43. https:// doi. org/ 10. 1080/ 09540 121. 2018. 14680 08. Africa: Lessons learned from the STAR (Self-Testing AfRica) Initiative. The full 4. Cheryl Johnson MK, Jamilah Meghji, Augustine Choko, Mackwellings contents of the supplement are available at https:// bmcin fectd is. biome dcent Phiri, Karin Hatzold, Rachel Baggaley, Miriam Taegtmeyer, Fern Terris- ral. com/ artic les/ suppl ements/ volume- 22- suppl ement-1. Prestholt, Nicola Desmond, Elizabeth L Corbett. Too old to retest?: A life course approach to HIV-related risk and self-testing among midlife-older Author contributions adults in Malawi. BMC Public Health. 2020. LH drafted the manuscript based on the data she collected and analysed in 5. Kurth A, Lally M, Choko A, Inwani I, Fortenberry J. HIV testing and linkage her MSc dissertation with LSTM. Substantial input was provided by supervi- to services for youth. 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Factors associated with HIV status awareness systems: a qualitative study of perceptions at macro, meso and micro levels and Linkage to Care following home based testing in rural Malawi. Trop of the health system. BMJ Glob Health. 2017;2:e000107. https:// doi. org/ 10. Med Int Health TM & IH. 2016;21(11):1442–51. https:// doi. org/ 10. 1111/ tmi. 1136/ bmjgh- 2016- 000107. 12772. 33. Hackett K, Lenters L, Vandermorris A, Lafleur C, Newton S, Ndeki S, 16. D’Elbée M, Indravudh PP, Mwenge L, Kumwenda MM, Simwinga M, Choko Zlotkin S. How can engagement of adolescents in antenatal care be AT, Hensen B, Neuman M, Ong JJ, Sibanda EL, Johnson CC, Hatzold K, enhanced? Learning from the perspectives of young mothers in Ghana Cowan FM, Ayles H, Corbett EL, Terris-Prestholt F. Preferences for linkage to and Tanzania. BMC Pregnancy Childbirth. 2019. https:// doi. org/ 10. 1186/ HIV care services following a reactive self-test: discrete choice experiments s12884- 019- 2326-3. in Malawi and Zambia. 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Indravudh PP, Sibanda E, d’Elbee M, Kumwenda MK, Ringwald B, Maringwa transition towards managing their HIV more independently. J Int AIDS Soc. G, Simwinga M, Nyirenda L, Hatzold K, Johnson CC, Terris-Prestholt F, Tae- 2020;23(Suppl 5):e25552. https:// doi. org/ 10. 1002/ jia2. 25552. gtmeyer M. ‘I will choose when to test, where I want to test’: Investigating 36. Archary M, Pettifor AE, Toska E. Adolescents and young people at the centre: young people’s preferences for HIV self-testing in Malawi and Zimbabwe. global perspectives and approaches to transform HIV testing, treatment and AIDS. 2017;31(Suppl 3):S203–12. https:// doi. org/ 10. 1097/ QAD. 00000 00000 care. J Int AIDS Soc. 2020;23(Suppl 5):e25581. https:// doi. org/ 10. 1002/ jia2. 001516. 25581. 19. Biddlecom A, Munthali A, Singh S, Woog V. ‘Adolescents’ views of and prefer- 37. 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BMC Infectious Diseases (2022) 22:395 Page 10 of 10 Publisher’s Note Springer Nature remains neutral with regard to jurisdictional claims in pub- lished maps and institutional affiliations. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Infectious Diseases Springer Journals

“You have a self-testing method that preserves privacy so how come you cannot give us treatment that does too?” Exploring the reasoning among young people about linkage to prevention, care and treatment after HIV self-testing in Southern Malawi

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Abstract

Background: Young people, aged 16–24, in southern Malawi have high uptake of HIV self-testing (HIVST ) but low rates of linking to services following HIVST, especially in comparison, to older generations. The study aim is to explore the barriers and facilitators to linkage for HIV prevention and care following uptake of HIV self-testing among young Malawians. Methods: We used qualitative methods. Young people aged 16–24 who had received HIVST; community-based distribution agents (CBDAs) and health care workers from the linked facilities were purposively sampled from two vil- lages in rural southern Malawi. Results: We conducted in-depth interviews with thirteen young people (9 female) and held four focus groups with 28 healthcare workers and CBDAs. Young people strongly felt the social consequences associated with inadvertent disclosure of HIV sero-status were a significant deterrent to linkage at their stage in life. They also felt communication on testing benefits and the referral process after testing was poor. In contrast, they valued encouragement from those they trusted, other’s positive treatment experiences and having a “strength of mind”. CBDAs were important facilitators for young people as they are able to foster a trusting relationship and had more understanding of the factors which prevented young people from linking following HIVST than the healthcare workers. Young people noted contextual barriers to linkage, for example, being seen on the road to the healthcare centre, but also societal gendered barriers. For example, young females and younger adolescents were less likely to have the financial independence to link to services whilst young males (aged 19–24) had the finances but lacked a supportive network to encourage linkage fol- lowing testing. Overall, it was felt that the primary “responsibility” for linking to formal healthcare following self-testing is shouldered by the young person and not the healthcare system. *Correspondence: lisaharrisonwk@gmail.com Department of International Public Health, Liverpool School of Tropical Medicine, Liverpool, UK Full list of author information is available at the end of the article © The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecom- mons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 2 of 10 Conclusions: Young people are happy to self-test for HIV but faced barriers to link to services following a self-test. Potential interventions for improving linkage suggested by this analysis include the establishment of youth-friendly linkage services, enhanced lines of communication between young people and healthcare providers and prioritising linkage for future interventions when targeting young people following HIVST. Keywords: Adolescents, Young people, HIV self-testing, Malawi, Linkage, Community-based health Background International (PSI) a locally based international NGO In the past decade, public health strategies in Sub-Sahara working on the ground through community-based dis- Africa (SSA) have focused on increasing young people’s tribution agents (CBDAs) on short term contracts, who access to HIV testing and treatment services because distribute the HIVST kits to people of all ages in the com- of the high HIV incidence and low uptake of testing in munity. Whilst distributing these tests the CBDA’s advise this sub-group [1, 2]. Adolescence is widely recognised and give information to all users on how to link to formal as a period of physical and mental development, a time health services for confirmation testing, however they are of testing boundaries, increasing independence and risk- not trained in professional post-test counselling. Included taking, which elevates their vulnerability to HIV infection in the HIVST kit is a referral card which all users present at [3–5]. the formal health services. Malawi has a young and growing population. In 2018, Despite the high acceptance of HIVST, young people in a fifth of the population was aged 15–24 years and nearly Malawi are less likely to link to formal health services post- 32% of new HIV infections occurred in this group and HIVST [14, 15]. This creates a treatment gap between the a majority among female adolescents [6–8]. Young peo- adult and younger population evidenced in 2016 where ple in Southern Malawi have an increased vulnerability 41% of HIV positive adolescent and young Malawian to HIV as they are less likely to use condoms and more people aged 15–24 were aware of their status and receiv- likely engage in sexual activity at a younger age [8]. Addi- ing Antiretroviral Therapy (ART) in comparison to of 69% tionally, pre-marital sex is strongly disapproved of which adults [11]. Reported barriers for young people to access- creates a “culture of silence” whereby the negative con- ing general sexual and reproductive health (SRH) services sequences of sex are emphasised so young people fear in Malawi include; fear of HIV-related stigma and dis- discussing sexual health issues with their parents or peers crimination, the lack of confidential and “youth-friendly’ [9]. Myths and misconceptions about HIV transmission SRH services and the associated cost of transport [16–21]. and treatment spread among adolescents and further Reportedly, receiving STI treatment and therefore keep- elevate HIV risk [10]. There are multiple reasons why ing their STI status private is a motivation for young young women and girls in Malawi experience this high Malawian people to access sexual health services as this HIV burden including being more likely to experience preserves their social status in the community [17], the sexual violence, intergenerational relationships and expe- same hasn’t yet been revealed, however, for young people’s riencing a younger age of sexual debut and marriage than reasoning in linking to HIV services. The U = U (Undetect- their male counterparts [9]. Furthermore, adolescents able = Untransmittable) campaign is a powerful message in Malawi experience lower HIV testing coverage then for people living with HIV (PLHIV) to encourage linkage their adult counterparts, exemplified in a 2015–16 sur - to post-testing services and adherence to treatment [22]. vey where 79% of adults (over 24 years) had ever received Yet, young people in Malawi may not have knowledge of HIV testing and results in comparison to only 40.4% of this campaign as in 2016, just 41% of women and 44% men adolescents (15–19 years old) [11]. (aged 15–24) had a “comprehensive knowledge of HIV”— Reaching young people with HIV testing and preven- which did not include knowledge of the U = U campaign tion and care services is a priority of the Malawi HIV and [8]. AIDS Strategy [12]. HIV self-testing at home has played a We investigated self-tested young people’s perceptions key role in increasing testing uptake in this group [1, 13]. on the barriers and facilitators to linking to services after Choko et al. (2015) found that adolescents in Malawi, had HIVST. the highest uptake of HIVST over a 2-year period, due to increased confidentiality, convenience and ease of use and 56% of users, of all ages, linked to treatment [13]. As a result of this data, HIVST for young people became a key focus in Malawi for the HIV Self-Testing Africa (STAR) Initiative with implementation led by Population Services Har rison et al. BMC Infectious Diseases (2022) 22:395 Page 3 of 10 an in-depth exploration of their individual perspec- Methods tives in relation to their underpinning characteristics A cross-sectional, inductive, qualitative approach was and beliefs [23]. Furthermore, as this involved discus- utilised to examine young people’s perceptions about the sion of sensitive topics like HIV testing, a focus group reasons for linking, or not linking, to confirmatory test - discussion would likely inhibit responses about per- ing and treatment after receiving a positive self-screen sonal behaviour due to the lack of confidentiality. FGDs result. was chosen to explore the collective perspectives of the HIVST suppliers; healthcare workers and CBDAs (in Study setting separate FGD’s), to additionally observe any conflicts or From the most recent national demographic health agreements between the villages and professions [25]. survey in 2015–16, the southern region of Malawi has IDIs and FGDs were held in the participants’ preferred the nationally highest HIV prevalence [8]. Two villages languages of Chichewa or Chiyao by a research assistant within the Southern Machinga district were chosen for (male, aged 25) who had previously lived and worked in sampling locations as unpublished process data from the area to further build trust with the participant but STAR (2018) demonstrated that young people who self- also impart contextual knowledge to the main researcher tested from the Southern Machinga district had com- (LH, female aged 26), who took observational notes and paratively low rates of linkage to services. Village 1 was made further iterative enquiries to further explore previ- purposively chosen to sample participants because it ously unexpected topic areas. A semi-structured inter- had the lowest rates of linkage in the district and, there- view topic guide was used to guide discussions, with open fore, likely held the richest data. Village 2 in the same questions such as “What are your opinions of local health district was chosen for comparison as it was the closest facilities and how they treat young people?” and further village with higher rates of linkage to Village 1. solution-orientated questions, for instance “if you could organise how young people link to services after HIVST, Sampling strategy what would you do?”. The topic guide also included meth - To approximate information saturation in the short ods of free-listing, ranking and scenarios as described by time frame provided, rapid appraisal methods were Palmer [24]. Free listing involved the participants listing used with swift participation sampling rather than any reasons young people would link to services (or not), other naturalistic methods [23, 24]. Young people were these were then ranked by perceived importance to give sampled purposively, where predicted information-rich means of comparison. These reasons and rankings were participants were recruited by local CBDAs, who would referenced for further exploration within the interviews. verbally describe the study so the young people could All participants were presented with hypothetical sce- provide informed consent. Young people aged 16–24 narios and asked to describe what would happen in their were sampled, with a deliberate majority of females and community, for example, “What would a young person efforts to include younger adolescents (below 18  years do if they went to a health facility to get treatment and old). To avoid stigma associated with study-participa- they saw someone else their age?”; “Would it be different tion, participants were not required to reveal their HIV if they knew them?”. This methodological triangulation status or whether they linked to services post-HIVST. helped build rapport, facilitated further exploration and Healthcare workers and CBDAs were sampled from safeguarded the data’s trustworthiness [26, 27]. the village’s health centres, balanced in age and gender. Included healthcare providers were of the same cadre to lessen professional hierarchy bias. Data analysis A thematic framework approach was used to analyse the qualitative data and observe differences between par - Data collection ticipants’ perspectives. After transcription and transla- Rapid appraisal methods; such as in-depth interviews tion of data the lead researcher (LH) first familiarised (IDI) with purposive opportunistically sampled par- and immersed herself in the data. From this immersion, ticipants and focus group discussions (FGD) of key a coding framework was developed using a priori/deduc- informants, aim to assess and address a community’s tive codes and each IDI and FGD was double-coded after health needs within a limited time frame to give prac- the transcripts had been imported in NVivo 11 (QSR- tical recommendations and was therefore chosen to Australia). Categories of coded data were grouped to approximate information saturation in the short time reveal overarching themes. Participant’s responses were frame provided [24]. compared between villages, young people, healthcare In-depth interviews were adopted with the workers and CBDAs. Data triangulation was also strati- 16–24-year-old study participants as these allowed for fied by the socio-demographic characteristics of; age, Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 4 of 10 The contextual impact on the assurance of confidentiality sex, village and HIV status where the latter had been dis- Most participants agreed that young people would closed voluntarily. not link to formal health services following a positive Ethical approval for this project was given by the Liv- HIVST result due to the anticipated negative social con- erpool School of Tropical Medicine (LSTM) on the 29th sequences of inadvertent disclosure of their HIV status. March 2018 and in Malawi by the College of Medicine Interestingly and in contrast to the majority, three young Research and Ethics Committee (COMREC, Protocol people (2 female and 1 male, aged 23–24) from Village 1 number:P.01/16/1861) on the 13th April 2018 under described how early linkage to confirmatory testing and research with the STAR (HIV Self-Testing Africa Ini- subsequent treatment preserved their serostatus privacy; tiative) affiliated with Malawi-Liverpool Wellcome Trust (MLW). “You try to hide it from people because when you wait for you to be sick people get to realize what is Results really wrong with you” (Male, 23) We included 41 participants (see Table 1). Thirteen IDI’s A healthcare provider from Village 1 described that were conducted with the young participants and an addi- the facility held youth-specific days for HIV services sup - tional 28 individuals participated in four FGD’s with two ported young people’s access to post-HIVST services groups of healthcare workers and two groups of CBDAs due to the social support from their peers and youth- from each village. Although the young study participants friendly health providers. Four of the seven young peo- were not required to reveal their HIV status, 12 out of 13 ple and CBDAs from Village 1, however, narrated that participants voluntarily disclosed this during the IDIs. By this approach as an obstacle as it is not effective in safe - chance, most young people sampled from Village 1 had a guarding their privacy in their serostatus or that they HIV + status whereas as the majority from Village 2 had a were accessing post-HIVST services, and preferred using HIV − status. healthcare centres further away but with less visible Confidentiality and not wanting to disclose HIV status, routes; social support, communication, and attitudes/percep- tions toward the health facilities emerged as key themes “When people in the village see [young people] going on factors influencing linkage to healthcare following a on that day, they definitely judge they are going for positive HIVST result at home for young people. treatment and mock them” (Female, 23) Table 1 Participants demographic characteristics Categories/sub categories Data collection approach In-depth Interviews (n = 13) Focus group discussions (n = 28) Population group Young HIV self-testers Health Care Workers (16) Community Based Distributing Agents (12) Location Village 1 7 7 Village 1 (6) Village 2 6 9 Village 2 (6) Sex Female 9 8 8 Male 4 8 4 Age 16–19 3 N/A N/A 20–24 10 0 2 25–30 8 3 30 + 8 7 HIV status HIV-Positive 7 N/A N/A HIV-Negative 6 Unknown 1 Totals 13 16 12 Har rison et al. BMC Infectious Diseases (2022) 22:395 Page 5 of 10 In conflict with this position, nearly all young peo - them to not to go to the hospital… Because they say ple ranked the long distance to healthcare centres and the virus has no cure (Female, 24)” associated transport costs as a highly important barrier Both village healthcare centres were said to have to linkage. One CBDAHIVST provider from Village 1 “expert client” volunteers in the facilities who were pre- described young people’s frustration on the lack of a con- sented to patients as “treatment role models”. The health - venient and private approach for linking to services for care workers and some CBDAs were convinced that those self-testing HIV positive; expert clients had an important role to play in facilitating “[Young people] tell us that ‘you have a self-testing health-service linkage and treatment adherence among method that preserves privacy so how come you HIV self-tested youth; cannot give us treatment that does too?’” (Village 1 “When youths see these HIV positive people living CBDA FGD Participant) happy and healthy, they get encouraged and see no reason of isolating themselves from treatment.” (Vil- lage 1 healthcare worker FGD) Availability of social support and trusting relationships In contrast, “expert clients” were ranked of low impor- The presence or absence of social support from a trusted tance by the young people, and were even described as individual was described as an important factor for youth “ineffective” by a healthcare worker in Village 2, who nar - to access confirmatory testing and treatment following rated that no expert client is under 25-years-old and their HIVST. There were conflicting views on parental sup - ‘counselling’ is only confined to the health facility. port; three young females (aged 16–22) across the vil- lages’ stated parents were supportive as they are “wise” whereas three young people in Village 2 (two males and Communication between CBDAs, healthcare workers one female aged 18–23) expressed concerns that their and NGO staff parents may compromise their unwillingness to disclose The most notable difference between the villages was the their serostatus publicly. relationship between healthcare workers, CBDAs and Eleven young people, both CBDA and the village 2 NGO staff. In Village 2, this relationship was a facilita - healthcare FGD participants, observed that CBDAs were tor, but a barrier in Village 1. A healthcare worker from well placed to foster trusting relationships with young the Village 1 health centre lamented that the CBDAs people and could encourage accessing formal health ser- didn’t counsel young people when they received a posi- vices following HIVST because they lived and worked in tive result, even though CBDAs are trained in HIVST the community and could be accessed in the village for distribution, not professional post-test counselling. This advice without young people experiencing fear of inad- suggests that the CBDAs’ role was not fully explained vertent HIV status disclosure; to the healthcare workers in Village 1. A young woman “Even when [my friend] has some health problems, from Village 1 described how the fractured relationship he consults the CBDA, I even saw him yesterday between CBDAs and healthcare workers hindered her going to the CBDAs house” (Male, 20). access to post-HIVST services when she presented at the facility; Despite their placement in the community, CBDA’s were perceived as confidential figures as the young peo - “[The healthcare workers] didn’t believe that I have ple had observed them talking to their peers and their done self-testing, [my CBDA] gave me a referral peer’s serostatus was not revealed within the community. card, I said I don’t see any reason to not believe me.” Four young people (two male and two females, aged (7FYP, 21) 18–23) described peer support as a facilitator to linkage The healthcare workers in Village 2 described how they following HIVST but these were often informal and with experienced a similar scenario and the NGO organised a no mention of sexual partners. For example, one young meeting to explain the roles of the professionals to each self-tester from Village 1 (Female, 21) narrated that some other and confirmed referral methods. In this meeting, it young PLHIV created a secret support group to encour- was decided that mobile phones would be used to sup- age each other’s treatment adherence. However, many port referrals of young HIV self-testers between CBDAs young people and participants in the four FGDs dis- and healthcare workers based at a facility. However, a cussed how the general perception that HIV treatment is meeting of this nature had not taken place in Village 1. not a cure leads to a fatalistic attitude even among peers; Participants in all the four FGDs desired more inter- “[Young people] don’t go because of peer influence, action and communication between CBDAs and health when they disclose to their friends, [they] influence Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 6 of 10 workers to ensure seamless referrals and to prevent and financial security. Additionally, young women future tension, as articulated; described how they were less able to afford any trans - port costs as they held less lucrative jobs living with “We were not involved in any of the meetings their parents; which the project implementers conducted with the CBDAs, so we had no clue on what role we were “A boy would emigrate and work at tobacco farms playing and what role were the CBDAs playing.” to buy a bike while a girl wouldn’t” (Female, 23) (Village 1 Healthcare worker FGD Participant) More females stated having “strength of mind” as Furthermore, this lack of communication between the an important facilitator. This may relate to a CBDA’s healthcare providers, CBDAs and self-tested young peo- observation in Village 1 that females are more likely to ple contributes to a failure in recognising young people’s have a close relationship with their parents at home, barriers to post-HIVST services linkage. The young peo - disclose their status and receive encouragement to have ple and CBDAs ranked the following four factors of high the ‘strength of mind’ to link to formal health services. priority for linkage (special treatment days, distance as For the young men, the story was different as illustrated barriers and encouraging CBDAs and “strength of mind” in a quote below; as facilitators) whereas the healthcare workers ranked “It is really difficult for young people, mostly boys, these factors as low priority. they take time to disclose their results to their par- ents, they are hard to convince them to accept it, it Role of health centres in promoting linkage is like you’re working with a lion” (Village 1 CBDA Seven young people and all of the FGD participants FGD Participant) ranked healthcare services as the most important facili- In terms of age, study participants falling within the tator to ensure linkage to confirmatory testing and HIV 16–19 and 20–24-year-old age groups held similar per- treatment and care. The need for a confirmatory test was spectives on linking (or not) to post-HIVST services. said to encourage young people to link in order to dis- However, this is likely due to the lack of comparative pel anxieties on whether young self-testers performed data as only three participants were aged 16–19, and the self-test accurately. Furthermore, eight young people they seemed to find it difficult to fully articulate their stated they, and other peers, linked to health centres after reasoning for linking to services or not. One young per- observing HIV symptoms and to “stay healthy”. No young son from Village 2 (aged 23) described how adolescents person mentioned the U = U campaign as an incentive find the associated travel costs a larger obstacle than for linkage, however, this was also not probed for. their older counterparts as they are more likely to be The FGD participants described the healthcare work - financially dependent on their parents. Additionally, a ers providing confidential counselling and treatment as healthcare worker noted how the cultural perceptions another facilitator. Most young people described health- of adolescents contribute towards undermining agency care workers as respectful or “welcomed them properly”. to make independent decisions; Noticeably, young people and healthcare workers both described this respect as reciprocal; “According to our Malawian culture, a person who is sixteen is still a little child…, he needs a guard- “It depends on the attitude of the [young] person …. ian to guide him” (Village 1 Healthcare worker We don’t shout at them but on the issue of respect it FGD Participant) depends on their attitude (Laughter) (Pause) Accord- ing to our job and hospital rules we still respect [by The village of residence had a bearing on the ability not shouting or getting angry with] them whether to link to services following HIVST. A major differ - they respect us or not” (Village 2 Healthcare worker ence between the villages was that young people from FGD Participant) Village 2 described living a “sexually-risky” lifestyle as a driver to link to post-test confirmatory testing and treatment services as illustrated in this quote; Influence of demographic characteristics on linkage When the perspectives were stratified by gender, it was “Most male young people who go to the lake earn observed that young males were more concerned with huge amounts of money which influence them to the impact on their societal status in the community indulge in sexual relationships with all kinds of or loss of sexual partners from a potential inadvert- people and when they test themselves Negative ent HIV status disclosure during linkage. In contrast, that’s when they come for verification” (Village 2 young females were afraid of the social consequences CBDA FGD Participant). in terms of losing potential future marriage proposals Har rison et al. BMC Infectious Diseases (2022) 22:395 Page 7 of 10 This “sexually-risky” lifestyle is likely related to the [34–36]. However, this study showed a lack of commu- available income from fishing activities in Village 2, and nication between the young people and the healthcare not in Village 1, so young men from this village were workers. In Kenya, a study reported that having stake- more likely to engage in transactional sex. Furthermore, holders and a young person’s “advisory group” involved more young people in Village 1 discussed issues relat- in the planning of treatment distribution, improved link- ing to travel “visibility” as there is a single route to the age by 41% [37]. Therefore, this should be a priority in nearest health-centre which the local community lives future HIVST implementation to increase young people’s alongside. Meanwhile in Village 2, there are multiple, less linkage to post-HIVST health services. visible routes to the health facility. As with previous findings, [18, 38], this study also highlighted how CBDAs were motivators and preferred Discussion by young people because they were trusted and lived in This study is one of few to describe young people’s per - the villages with the young people, whereas this trust in ceptions of barriers and facilitators to linking to services healthcare professionals was only experienced by those following HIVST. Similarly to Malawi adults and echoing who linked to services. previous findings, confidentiality and the self-preserva - In this study, ‘expert clients’ roles were described as tion of their serostatus pervaded young people’s reason- confined within the health facilities with a limited role ing for linking to post-HIVST services [18, 28]. This was in the community. This is a lost opportunity, as multi - gendered and affected by young people’s age, reiterating ple studies [21, 29, 39] have reported how integrating Hatchet et al. (2012) [29], as adolescents and young males peer supporters, especially PLHIV, into the healthcare were less likely to disclose their status to others and so system during follow-up visits can be especially effec - experience less support in linking to post-HIVST ser- tive in increasing young people’s linkage. Hence, they vices. Our finding that young people emphasized having could effectively promote linkage for the young people by “strength of mind” as a facilitator highlights how young working in conjunction with the CBDAs in the commu- people feel expected to shoulder the burden of linking to nity. Expert clients and/or CBDAs could also provide a formal healthcare services by overcoming a multitude of means of transport which has also been found to increase barriers. linkage for young people [40, 41] and help to improve An unexpected barrier was that of poor communica- communication between those in the community and tion/relationship between CBDAs working in the com- healthcare providers based at the referral facility. munity distributing HIVST kits and the healthcare workers based at a clinic who provide follow-up services. Methodological limitations This finding shows a “fragmented” approach to imple - Using CBDA recommendations for purposive sampling mentation, with a focus on increasing HIV testing uptake may have created a sample bias towards the young peo- but little emphasis on subsequent linkage to post-HIVST ple’s positive CBDA descriptions as the CBDAs likely services like confirmatory testing or treatment. This lack chose participants with whom they had a positive rela- of joined up thinking can negatively impact sexual health tionship. Furthermore, there was an unintended location outcomes [30]. Community health programmes that bias whereby most young people sampled from Village 1 effectively work with close-to-community providers have disclosed a HIV + status and in Village 2 a HIV − status. been shown to successfully reach pregnant adolescents or All the young PLHIV had linked to post-HIVST services young people who were lost to follow-up from HIV care, and as such their perspectives and experiences may have by building on the important interface role that close to been different from those of the individuals who failed to community providers have between the health system link. Most of the HIV negative young people’s perspec- and the communities they serve [31, 32]. Deliberately tives were based on other’s experiences or hypothetical aligning tasks to national community-health programmes thinking. This lack of comparison with experiential data is likely to ensure improved community support to post- was mitigated through the triangulation of data from dif- test linkage in adolescents during a period when interna- ferent sources and the range of participants provided a tional funding for bespoke support is declining [31–33]. holistic view of linkage reasoning from the HIVST supply Our findings on the importance of the CBDA cadres give and demand perspectives for young people. further evidence how it is vital to understand the local Despite the sensitive nature of the discussions with the context to address issues of professional distrust or unfa- young people, the trust gained with the researchers in the miliarity which affect upon service delivery performance limited time frame is evidenced through the majority of and impact [31, 32]. participants self-disclosure of their serostatus. This may Youth participation should be a programme priority to be due to the researchers being balanced in gender and of increase young people’s access and use of SRH services a relatively younger age, 25 and 26. Harrison et al. BMC Infectious Diseases (2022) 22:395 Page 8 of 10 Availability of data and materials Conclusions The datasets used and/or analysed during the current study are available from In conclusion, HIVST provides confidential and con - the corresponding author on reasonable request. venient testing which increases uptake among young people. However, linking to confirmatory testing and Declarations treatment following a self-test at home remains a Ethics approval and consent to participate daunting challenge as the onus of responsibility to link Ethical approval for this project was given by the Liverpool School of Tropical rests on the young people and their ability to navigate Medicine (LSTM) on the 29th March 2018 and in Malawi by the College of multiple and complex barriers. This study shows the Medicine Research and Ethics Committee (COMREC) on the 13th April 2018 under research with the STAR (HIV Self-Testing Africa Initiative) affiliated with importance of communication between target ben- Malawi-Liverpool Wellcome Trust (MLW ). eficiaries and the different health providers involved within a health intervention delivered at community Consent for publication As part of consenting to take part in the study, participants consented to level. It also highlights young people’s reasoning for publication of the data, with assurance of their anonymity as all personal iden- linking to services post-HIVST, including the differing tification has been removed from the data set. This data is readily available contextual and gendered perspectives, which future upon request and has been stored with LSTM and MLW for 5 years after the completion of data analysis. Malawian policy makers and implementers can use to implement effective interventions with a targeted Competing interests response to encouraging different groups of young The authors declare that they have no competing interests. people’s linkage post-testing. Implementing these rec- Author details ommendations in the national scale-up of HIVST in Department of International Public Health, Liverpool School of Tropical Malawi would maximise the benefits of young people’s Medicine, Liverpool, UK. Malawi Liverpool Wellcome Trust Clinical Research Programme, Blantyre, Malawi. School of Public Health and Family Medicine, high uptake of HIVST; so more young people receive College of Medicine, University of Malawi, Blantyre, Malawi. Depar tment treatment to achieve viral suppression and, ultimately, of HIV Prevention, Population Services International, Blantyre, Malawi. Depar t- reduce the national incidence and prevalence of HIV in ment of Clinical Research, London School of Hygiene and Tropical Medicine, London, UK. Population Services International, Johannesburg, South Africa. Malawi. Department of Global HIV, Hepatitis and STIs Programmes, World Health Organization, Geneva, Switzerland. Zambia AIDS Related Tuberculosis Project, Lusaka, Zambia. Clinical Sciences Department, Liverpool School of Tropical Abbreviations Medicine, Liverpool, UK. Tropical Infectious Diseases Unit, Royal Liverpool ART : Antiretroviral therapy; CBDAs: Community-based distributing agents; University Hospital, Liverpool, UK. FGD: Focus group discussions; HIVST: HIV self-testing; IDI: In-depth interviews; MLW: Malawi-Liverpool Wellcome trust; PLHIV: People living with HIV; SSA: Received: 1 March 2022 Accepted: 2 March 2022 Sub-Saharan Africa; STAR : HIV self-testing Africa Initiative; WHO: World Health Organisation. Acknowledgements The authors would like to acknowledge the young people, community-based distributing agents and health care workers who gave their time to be inter- References viewed. Thanks to the help and support from the staff at Population Services 1. World Health Organization. Consolidated guidelines on HIV testing International in Malawi Blantyre in facilitating the planning of this project, the services for a changing epidemic. 2019. 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BMC Infectious Diseases – Springer Journals

Published: Apr 21, 2022

Keywords: Adolescents; Young people; HIV self-testing; Malawi; Linkage; Community-based health

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