Barriers to HIV testing among male clients of female sex workers in Indonesia

Barriers to HIV testing among male clients of female sex workers in Indonesia Background: Frequent engagement of men in sexual encounters with female sex workers (FSWs) without using condoms places them at a high risk for HIV infection. HIV testing has been noted to be among important strategies to prevent HIV transmission and acquisition. However, it is known that not all men willingly undertake an HIV test as a way to prevent HIV transmission and/or acquisition. This study aimed to identify barriers to accessing HIV testing services among men who are clients of FSWs (clients) in Belu and Malaka districts, Indonesia. Methods: A qualitative inquiry employing face to face open ended interviews was conducted from January to April 2017. The participants (n = 42) were clients of FSWs recruited using purposive and snowball sampling techniques. Data were analysed using a qualitative data analysis framework. Results: Findings indicated three main barriers of accessing HIV testing services by clients. These included: (1) personal barriers (lack of knowledge of HIV/AIDS and HIV testing availability, and unwillingness to undergo HIV testing due to low self-perceived risk of HIV and fear of the test result); (2) health care service provision barriers (lack of trust in health professionals and limited availability of medication including antiretroviral (ARV)); and (3) social barriers (stigma and discrimination, and the lack of social supports). Conclusions: These findings indicated multilevelled barriers to accessing HIV testing services among participants, who are known to be among key population groups in HIV care. Actions to improve HIV/AIDS-related health services accessibility are required. The dissemination of the knowledge and information on HIV/AIDS and improved available of HIV/AIDS-related services are necessary actions to improve the personal levelled barriers. System wide barriers will need improved practices and health policies to provide patients friendly and accessible services. The societal levelled barriers will need a more broad societal approach including raising awareness in the community and enhanced discussions about HIV/AIDS issues in order to normalise HIV in the society. Keywords: Barriers, HIV testing, Male clients of FSWs, Indonesia Background the transmission of HIV within this population group Male clients of female sex workers (FSWs) (here on to [7–10]. Sexual intercourse has been reported as one of be known as clients) as well as the FSWs themselves the main routes of HIV spread in Indonesia, and men have been indicated as at high risk groups for HIV including these clients compared to women, are more infection [1]. Studies with this group in different settings susceptible to the infection with 59.2 and 40.8% respect- have reported that HIV infection is highly prevalent ively in last 5 years [11]. among them [2–6]. Frequent engagement in sexual Promoting access to HIV testing as well as voluntary encounters with multiple FSWs without condoms has counselling among individuals, including clients of been incriminated as one of the main contributors to FSWs, at risk for HIV infection has been considered as a key strategy for HIV prevention and associated with reduced risk behaviour [12–14]. The World Health * Correspondence: nelsen_klau@yahoo.com Organization has also recommended members of key Institute of Resource Governance and Social Change, Jl. R. W. Monginsidi II, populations, including clients of FSWs, who are at high No. 2, Kupang, Nusa Tenggara Timur 85221, Indonesia Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 2 of 10 risk for HIV infection to undergo HIV testing at least existence of these services and to access them regularly once a year [15]. However, studies and reports have for effective diagnosis of their HIV status. Affordability shown that access of the clients of FSWs to HIV testing refers to the economic capacity of clients of FSWs to in many settings is still low [16–20]. Barriers to acces- pay for transportation and HIV testing service. It also sing HIV testing services among these clients have been reflects the availability time to travel and access the reported elsewhere. These include: (i) clients’ fear of service. Appropriateness would relate to whether the HIV diagnosis which has been associated with stigma care meets the participants’ needs, including whether and discrimination, (ii) fear of losing a position in the the clients trust the professionals or care providers. Add- community due to societal norms of masculinity which itionally, the access framework further identifies the position men as physically strong (and HIV being associ- following five abilities of the populations that corres- ated with weakness), (iii) fear of losing the ability to be pond with the dimensions of accessibility: ability to self-reliant (having HIV being associated with having perceive (perception of the need of some service due to AIDS which could lead to loss of the ability to work), literacy level or cultural perceptions); ability to seek (iv) clients failing to make time for testing, and (v) the (could be influenced by personal values or knowledge of denial about being vulnerable to HIV, including low existence of the service); ability to reach (issues includ- self-perception of HIV risk [17, 19, 21, 22]. ing, transport availability, cost and the way in which the To our knowledge, the study participants, clients of services operates- e.g. issues whether professionally or FSWs, have not been the target of HIV prevention whether clients would feel stigmatised and develop fear programs or interventions in the study settings as well of their status been known to the wide community) [23]. as in Indonesia [11]. Likewise, accessibility to HIV Ability to pay (for instance, the affordability of services testing services and barriers to undergoing HIV testing is dependent on the cost of the services as well as the among clients in this nation have not been well docu- clients’ ability to pay for the services and ability to en- mented. Based on the educational backgrounds and pro- gage (e.g. when the services were not culturally appro- fessional experiences in the field of HIV/AIDS including priate to meet issues of clients of FSWS in Indonesia). in the study settings, the study authors had prior know- ledge of HIV testing barriers described above, and in- Study setting and design cluding: the lack of knowledge and information on HIV/ The selection of the study settings was based on several AIDS, poor availability and or accessibility of HIV/ factors including professional experiences of the AIDS-related health services, stigma and discrimin- researchers especially NKF and PALB who reside in the ation, and overall poor transportation to and from study districts. All researchers are health professionals the healthcare facilities. This qualitative inquiry aimed including medical doctors, nurses and health practi- to identify and document barriers to accessing HIV tioners, and are experienced researchers in public health. testing services among a sample of clients in Malaka The principal author (NKF) was an experienced manager and Belu districts, Indonesia. of HIV/AIDS programs targeting different population groups in the study settings and the senior author (LM) is a public health physician who chairs several commit- Methods tees related to migration, public health and chronic Theorectical framework disease including HIV/AIDS. Additionally, previous The current study was guided by access of health service studies in the same districts [24, 25] provided informa- (i.e.HIV testing service in this case) framework [23]. This tion regarding the existence of high numbers of local framework identifies five dimensions of accessibility of and nonlocal FSWs. health service including:approachability, acceptability, A qualitative inquiry was conducted from January to availability, affordability, and appropriateness) [23]. For April 2017 to identify barriers to accessing HIV testing example, approachability of services may relate to among male clients of FSWs from several rural areas in services being well known by participants and whether Belu and Malaka districts, Indonesia. The use of a quali- participants feel welcomed by the service providers. tative study design was useful in providing the re- Acceptability may refer to the cultural and social aspects searchers with opportunities to have direct interactions that influence the individual’s acceptance of care, and with the study participants and observe the situations which is judged by the person’s perceptions of the and setting where they lived, worked and interacted [26]. appropriateness of the care. Availability may mean that Because sex work is illegal, FSWs and their clients have the service exists and can be reached in a timely manner. not been the target groups for HIV services [24, 25]in This may be argued in relation to physical availability of these districts or in Indonesia. The two study districts the HIV testing service in this study settings and that can be considered as representative for the province as male clients of FSWs have the ability to know the they have socio-economic, cultural and religious norms Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 3 of 10 and values similar to the other districts in East Nusa The qualitative data analysis framework by Ritchie and Tenggara province. The study participants (n = 42) were Spencer [28, 29] was employed to analyse the data. This male clients of FSWs recruited purposively and additionally framework offereda systematic approach to manage the using a snowball sampling technique. The first stage was data and provided coherence and structure of analysis purposive where a staff member of a non-governmental [30–32]. The data analysis followed five steps including: organisation (NGO) that provides HIV/AIDS services in the districts and known to researchers was contacted to en- (i) Familiarisation with the data through reading list his help. Four initial participants known to be clients of transcripts line by line repeatedly, breaking data FSWs were provided with the study information by this into several chunks and commenting or labelling staff member. These four initial participants were then the data; asked to snowball and circulate the study information (ii) Identifying key issues, concepts and themes in a including researchers’ contact details to other people who coding frame and developing a coding scheme; were potential study participants. The inclusion criteria for (iii)Indexing the entire data by creating open coding participation were: (a) individuals who aged 18 years old or where similar and redundant codes were identified above, and (b) a male client of FSWs. Following the dissem- and the list made smaller and manageable. This was ination of information as describe above, 18 potential par- followed by creating closed coding where codes ticipants who met the inclusion criteria contacted the referring to the same theme were grouped researchers during the following 3 weeks. All of them con- together. This stage led to development of 11 codes sented to be interviewed voluntarily. After each interview, which were further synthesised to shortlist three participants were asked to distribute the same information overarching themes for the current paper; sheet to people they knew to be clients of FSWs. A further (iv) Charting the data which involved arranging 20 participants consented to participate in the study. appropriate thematic references in a summary chart Face to face open ended interviews were conducted to to enable comparisons across the interviews and collect the data from the participants using an interview within each interview; schedule. The development of the interview was informed (v) Mapping and interpretation which by the access of health service theoretical framework de- enabled examination of ideas that made up the scribed above. The guide explored broader issues includ- themes, and for relationship and association ing: factors that made the HIV testing services accessible between them to be seen. The framework analysis to participants: e.g. knowledge about HIV/AIDS and HIV approach enhances rigour, transparency and validity testing and HIV treatment issues; availability of HIV test- to the analytic process [33]. Analysis was ing and HIV medications; and other socio-cultural issues deductively (categories derived from the such as cost of the service and medications, attitudes and researchers’ prior knowledge on the topic and the behaviours of health professionals. Although thematic theoretical framework) and inductively (categories questions derived from this framework were employed to emerging purely from the data) [34]. guide the interviews, we maintained the essence of in-depth interview technique by having open ended ques- Results tions for participants to provide their broader experiences Participants’ profile (Table 1) (than would be the framework) of HIV testing services ac- A total of 42 participants were involved in this study. cessibility in these settings. A total of 42 clients of FSWs Participants’ ages ranged between 19 and 35 years, with were interviewed to reach data saturation [27]where no the majority of them being single (93%). None of the further new information seemed to emerge. Interviews study participants reported to have had HIV testing at with each participant were scheduled at their convenient the time of interviews. Participants reported multiple time and place and were conducted in Bahasa. All con- barriers to accessing HIV testing services and these are senting participants responded to all questions and none summarised in three themes (personal, health service of participants withdrew from the interviews. and social determinants), and further elaborated below. Data analysis Personal barriers The recorded data were transcribed into coding sheets Lack of knowledge of HIV testing and HIV/AIDS service and and translated into English by the research tea- lack of knowledge of the existence of HIV infection m.Although feedback from participants was not sought Although HIV testing service was made available in hos- after transcriptions, to maintain the quality and validity pitals and community health centres in the districts for of the data, data were crossed checked and comparisons all to utilise, findings of the current study indicate that between the researchers were conducted during the none of the study participants had undergone HIV test- transcription and translation process. ing. Lack of knowledge of the availability of this health Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 4 of 10 Table 1 Socio-demographic characteristics of the participants [HIV] test, they do not tell us to do it” (P32: 23 years old). Characteristics No. of Respondents N = 42 (%) Age “I do not know anything about it [HIV testing service], maybe because I hardly go to hospitals. 19 - 25 16 (38) Based on my experience, it seems like information 26 - 30 18 (43) about the test does not exist, I have a lot of friends 31 - 35 8(19) but nobody talks about it, or they might not know Job about it either ....” (P39: 25 years old). Motorcycle taxi drivers (Ojek) 15 (36) Construction workers 14 (33) The lack of general knowledge about HIV/AIDS services and the lack of knowledge about the existence of HIV Port workers 10(24) infection were barriers for taking HIV prevention mea- Unemployed 3 (7) sures among participants. For example, a failure to HIV Education testing meant that clients of FSWs did not know about High school graduates 35(83) their HIV status. In the current study, most participants Elementary school graduates 7(17) acknowledged that they were unaware of the existence Condom use with FSWs of HIV/AIDS, which seemed to be one of the factors precluding them from accessing available HIV testing Never 18 (43) services. The testimonials below allude to these asser- Sometimes 16 (38) tions: Always 8 (19) Number of sexual encounters with FCSWs in the past 6 months “I am not a highly educated person, just an 1 – 5 times 5 (12) elementary school graduate. I do not read 6 – 10 times 11 (26) newspapers or articles or book. I know nothing about HIV/AIDS and never think of HIV testing ≥ 11 times 26 (62) either” (P3: 20 years old). Number of FSWs they had sex with in the past 6 months 2 - 5 13 (31) “I would have looked for the [HIV] test if I knew 6 - 10 22 (52) about this disease [HIV/AIDS] and that I could be ≥ 11 7 (17) infected as well. How could I know if nurses and midwives do not provide us information about the service seemed to be among the barriers to accessing disease? I am busy with my work every day, from this service for participants across age and work groups. morning till evening ....” (P7: 28 years old). A total of 24 participants stated that they were not aware of these services. Assertions from a few partici- “I think it is possible for me to do the [HIV] test but pants’ testimonials are depicted below: how can I test for HIV if I am not aware that HIV/ AIDS exists? I do not know about the disease and the “I have been living here for the whole of my life and test. Every day I try to earn money, never think of visited our community health centre too many times diseases” (P15: 31 years old) but I am not aware of free HIV testing provided by the [local] government ....Nobody told me, the health “I never heard of it [HIV/AIDS]. There is no professionals in the community health centre did not information about that disease in the place like this say anything about it” (P11: 19 years old). [the harbour], everybody is busy with loading and unloading the materials. I have not tested for HIV “.... The testing might be available at the community because I do not know about the test and HIV ....” health centre but I haven’t heard of such service .... I (P28: 21 years old). have often accessed health services at our community health centre but not that one [HIV testing], I do not know anything about it” (P20: 22 years old). Unwillingness to undergo HIV testing and perceived seriousness of HIV infection “I never take HIV test because I do not know. Staff Unwillingness to undergo HIV testing was found to from the community health centre often visit be an important hindering factor among the clients communities here but they do not talk about the who were aware of the availability of free HIV testing Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 5 of 10 as well as counselling services in the districts. Low “When the time comes then I will do it [take HIV self-perceptions of the risk of acquiring HIV infection testing]. I do not want to do it now because I do seemed to be one of the reasons that made them un- not want to feel depressed if the result is positive” willing to take the test to discover their HIV status: (P30: 24 years old). “I have heard of the [HIV] test once I attended the “I do not undergo HIV test because I am scared if I HIV information session but I feel okay so far, am positive. I think I need to really prepare myself if I nothing to worry about. I do not think I need to take want to take the test. It will be a difficult decision HIV test because I am physically fine, I do not have because the result can change my life personally and any physical complaints” (P4: 22 years old). socially” (P2: 22 years old). “I do not have sex that often with them [FSWs], only once or twice in a month ....I think I am not at risk Health care service provision barriers of getting HIV infection, so I do not want to test Lack of health service trust in fear of disclosure of their HIV for HIV....I heard of the testing once ....” (P12: 19 status by health professionals years old). Lack of trust in health professionals was discovered to also influence the decision of FSWs’ clients to undergo “I do my work every day and physically feel well, I HIV testing as depicted in nine participants of varying don’t need that test. I think people would like to take ages. It was suspected that HIV status of people living a health test if they do not feel well or get sick for a with HIV/AIDS was made known to public by health certain period of time” (P27, 32 years old). professionals. As the consequence, the clients of FSWs did not want to access HIV testing service because they “I know about the test but why would I take the did not trust the health professionals in keeping the se- [HIV] test if I am not sick? It is weird if I am not sick cret of the test result or their HIV status: but taking the test, it would make people assume that I have done something wrong ....” (P25: 23 years old). “I do not test because I do not trust their mouths [health professionals]. They would tell their friends “I do not test for it [HIV] because I do not think I and family members if they know someone is infected can get the infection. I am fine, I feel great. Besides, I with HIV” (P8: 32 years old). do not easily get sick even though my work is physically demanding. I work for the entire day every “I know they [health professionals] do not keep the day, drive passengers from one place to another ....” secret of the health condition of patients. If I want to (P38: 31 years old). test for HIV, I would go to do it somewhere else but not here” (P22: 35 years old). Fear of a positive result of HIV testing was another rea- son supportive of the unwillingness of the clients of “Information about HIV positive people spreads so FSWs to access HIV testing services available for them. fast here, I am suspicious they [health professionals] Ten interviewees commented that knowing HIV positive are the ones who spread it. This is the reason I do not status could make them feel stressful, worried, and de- want to get tested” (P37: 24 years old). pressed; hence not taking HIV testing seemed to be a reasonable choice for them. Some of the assertions indi- “I do not accuse them [health professionals] but I cative of participants’ fear of knowing their HIV status guess they would tell their families or friends if they included: know that someone is HIV positive. .... I do not want to test [for HIV]” (P24: 23 years old). “I once thought of undergoing HIV testing but I am afraid of the result. It would be very stressful if I am positive. I have seen this on one of my neighbours Limited availability of medications including antiretroviral who is HIV positive, he is stressful. I do not want to (ARV) experience that” (P1: 25 years old) Limited availability of ARV also emerged during the interviews. It was brought up by two participants, com- “I am not afraid of the [HIV] test but worried about menting that ARV was hardly available in the districts the result. I do not know what to do if I get infected. and HIV/AIDS patients did not get treatment. This was This makes me feel not ready yet to take the test” indicated to be another factor that influenced them not (P14: 27 years old). to undergo HIV testing: Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 6 of 10 “I have thought of testing for HIV but I have not yet and work group categories commented that they could done it because I heard that ARV is very limited here. afford the medical and transportation costs as indicated It would be stressful if I get infected but there is no in the assertions below: ARV to treat the infection. I know a few HIV/AIDS positive patients do not take ARV because it is not “.... I can pay for health service or buy medicine, I available” (P16: 29 years old). guess it is not a problem. .... I just do not know about it [HIV testing], haven’t heard of it before” (P6: 20 “Knowing or not knowing my HIV status makes no years old). different to me because even if I am HIV positive I cannot access the treatment regularly because ARV is “Is there a test for the disease [HIV infection]? Maybe very limited. I know it is not available in the I can try sometime .... I can drive to the community community health centres” (P31: 26 years old). health centre or hospital, I have a motorbike .... the community health centre is not far from here” (P17: Fourteen study participants who had been exposed to 30 years old). information on HIV/AIDS confirmed that treatment to HIV/AIDS or ARV was made available only in one “.... I don’t think it would be difficult for me to access hospital. These participants appeared to know that the service [HIV testing], every day I pass through the patients diagnosed with HIV infection in community community health centre. I don’t worry about the health centres should receive further treatment at that buying medicine or the transport .... As I told you hospital. This further step needed for accessing ARV before, I haven’t heard of anything about the [HIV] seemed to be an additional barrier for voluntarily HIV test or the disease [HIV infection] ....” (P21: 22 testing, as could mean that if diagnosed, it would be a years old). process before receiving the required treatment. Testify- ing assertions included: “.... I guess maybe it is because I never think of getting tested for HIV .... No, I don’t think the costs to travel “ARV is only available in general hospital of Belu, to community health centre or to purchase medicine patients diagnosed with HIV in a community health are a big deal for me....I do not do it because I do not centre should go the hospital in the city to get the know at all ....” (P26: 33 years old). medicine or treatment, this discourages me to take the test ....” (P9: 26 years old). Social barriers “Even though someone is tested positive in a Fear of stigma and discrimination community health centre, he or she has to access HIV/AIDS-related stigma and discrimination are still HIV/AIDS treatment or ARV at the hospital [general prevalent in the districts where the current study was hospital of Belu] because treatment for HIV/AIDS is conducted and in Indonesia as a whole. Fear of being not available at community health centres. That means stigmatised and discriminated as the result of both if I take the test and get diagnosed with the infection, accessing HIV testing service and being an HIV positive then I need to go the hospital every time I feel sick and person seemed to be another precluding reason for the people will notice me” (P19: 21 years old). clients’ HIV testing. This not only kept them away from accessing HIV testing service to know their HIV status “I know about HIV testing but one of the reasons that but also other necessary HIV-related services, hence discourages me to do the [HIV] test is the limited making them even more vulnerable to HIV infection availability of ARV. I once read in a newspaper that and its impacts: ARV was not available at the general hospital of Belu for more than six months” (P42: 27 years old). “If I go and access the service [HIV testing] or take the [HIV] test then people who see me or know about “It is difficult to access ARV. HIV patients should go it would think that I am [HIV] positive and start the hospital that provides ARV .... It [the hospital] is gossiping about my HIV status. People are very quite far from here” (P10: 30 years old). sensitive about this issue [HIV], I have heard of people talking about the HIV status of others who did It was interesting that the cost required for medication the HIV counselling and testing” (P18: 21 years old). and transportation to the health services points seemed to not be barriers to accessing HIV testing among the “I do not want to be stigmatised. Everybody seems study participants. Twenty seven participants across age afraid of HIV, they would look at me with one eye Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 7 of 10 [cynical] if they know I do the [HIV] test. This has with multiple sexual partners without using condoms re- often happened to many HIV positive people and I ported in previous findings in Indonesia and elsewhere have seen it with my own eyes. I do not want the may put them at high risk for HIV infection [7–10, 35]. same thing happens to me” (P23: 26 years old). The findings of the current study reveal that despite having multiple sex partners and engaging in unsafe sex, “I do not want to do it [HIV testing] because people all the participants had never had an HIV test at the will start staying away from me if they know I do it time of this study. As such, they did not know their HIV [take HIV testing] or if I am [HIV] positive. I think status for further appropriate action. Access to HIV test- people do not want to get close to or make any ing services is an important finding which is well physical contact with HIV positive ones because they acknowledged to be central to HIV diagnosis and an im- do not want to get infected with HIV ....” (P29: 24 portant part of HIV care continuum [20, 23]. Although years old). the HIV testing services were available and affordable (free of charge) in the study settings, they were not “Stigma against people living with HIV/AIDS is still necessarily easily accessible to clients of FSWs in the prevalent here, that is why I do not want to know my study districts. The lack of knowledge about the avail- HIV status. If I do the test and the result is positive, ability of these services and low self-perceived risk for then sooner or later people will know it. They will HIV infection which are in line with previous studies’ start avoiding me, gossiping about me and this will findings [3, 12] were the main barriers for the majority worsen my condition ....” (P36: 28 years old). of the clients of FSWs to accessing the services. As pur- ported by the health accessibility framework [23], some of the participants abilities as well; for example, the Lack of social supports from friends and family ability to seek (e.g. due to cultural and personal values) The lack of social support played a role in influencing and the ability to reach (e.g. due to distrust of the pro- health seeking behaviour of the clients of FSWs. It fessionals) depicted in the responses of some partici- appears that all the study participants did not receive pants, seemed to influence the decision to access HIV support including information and emotional supports test service by the study participants. Some of these as- from friends or family members or health professionals pects, including limited availability of healthcare facil- to undergo HIV testing or access HIV/AIDS-related ities, poor affordability of medicine and travel to health services. This might be due to the topics of HIV/AIDS care facilities, and lack of knowledge of HIV problem, and HIV testing were absent from their daily conversa- have also been reported in previous studies as hindrances tion with friends and family members, and they did not to accessing HIV/AIDS-related health services [36–38]. consult health professionals either: As previously noted ‘the idea of knowing’ (a positive diagnosis) of the HIV status by individuals creates fear, “I do not feel any support from friends or family in and is a known barrier to accessing services [19, 21]. relation to HIV testing. We never talk about this After nearly 40 years after the initial emergence of HIV topic” (P5: 28 years old). knowledge, the current study indicates that the fear of an HIV diagnosis was still a hindrance to accessing HIV “My parents, brothers and sisters do not know about testing services by the participants. Further, Lahuerta my sexual behaviour, so they never say anything about and colleagues [21] and Darling and colleagues [19] have HIV/AIDS or HIV testing. I think they do not cited that HIV stigma and discrimination occur as the understand about HIV/AIDS or HIV testing” (P13: 33 consequences of an HIV positive diagnosis in some years old). populations. Stigma and discrimination may relate to poor approachability of service providers and poor ap- “None of health professionals tells me or encourages propriateness of health care service provision [23]. In me to undergo HIV testing. I would do it if a doctor this study, these were depicted in the participants’ or nurse helps me and if I am convinced that it is safe distrust of the health professionals – with the percep- and confidential. But to be honest, I never seek for tions that health professionals were capable of breaching help from health professionals” (P34: 25 years old). confidentiality of the HIV test results. Findings from studies elsewhere have shown that the lack of anonymity and confidentiality of HIV test results are important de- Discussion cision drivers to HIV testing [36, 39–42]. It is important This study aimed to identify barriers to accessing HIV to note that although stigma and discrimination were testing services among clients of FSWs in two Indones- noted to be barriers to accessing HIV/AIDS-related ian districts. The engagement of clients of FSWs in sex health services in other population groups [43–45], in Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 8 of 10 the current study, stigma and discrimination expressed the social networks of the current study participants or by the study’s participants were perceived rather than from other parts or outside of the districts, leading to an actual, as none of them had accessed HIV testing ser- incomplete overview of the barriers to accessing HIV vices or diagnosed with HIV infection. In supporting the testing among the clients. It is therefore reasonable to access framework and studies elsewhere [3, 23, 24], poor be cautious and to assume that the current study availability of ARV for HIV treatment was an additional findings are less likely to be transferred to clients from barrier to undertaking the HIV testing for a few study different sites with different characteristics. However, to participants whose perceptions were that diagnosis our knowledge these are the first qualitative study would not necessarily lead to HIV treatment required in findings on this topic, hence could be useful to inform the HIV care continuum. HIV strategies and interventions for this group in the Other socio-cultural issues including the absence of study settings or other similar settings in Indonesia. HIV/AIDS and dialogues in daily conversations, and the lack of support from families, friends, health profes- Conclusions sionals and significant others, since the emergence of This study reports several barriers to accessing HIV test- HIV scourge ~ 40 years ago [46], leave a lot to be ing services among clients in the study settings. Three desired. It is well established that social support from levelled barriers including at: (i) personal, (ii) health care peers, sex partners and families, including caring atti- service provision, and (ii) societal levels, were found. tudes, accompanying to healthcare facilities for testing, The lack of knowledge about the availability of HIV and helping with transport to health facilities increases mo- testing services was a major barrier for HIV testing tivation for HIV testing and reduces HIV testing-related among study participants. However, the clients who were anxiety [37, 47, 48]. It is plausible to indicate that the mo- aware of the HIV infection and the service did not tivation to improved testing availed via social support might undergo HIV testing either. Limited availability of HIV be a result of the lessening of fear of being avoided or treatment including ARV and perceived stigma and rejected by significant others, known to affect people living discrimination after being known to be HIV positive, with HIV, and as stated elsewhere, a barrier to HIV testing were significant underlying reasons for participants to [47, 49, 50]. Trust in significant others and facilitators of not access the HIV testing services. To improve the HIV testing such as the provision of incentives, implemen- accessibility to HIV testing and overall health outcomes tation of HIV testing at community or household level and by clients, a multilevelled approach is needed to address at private testing facilities and provider-initiated HIV test- all the barriers. These may include: the dissemination of ing which have been reported elsewhere [38, 49, 50], were information on HIV/AIDS and improved availability of not mentioned by participants. Given that there was previ- HIV/AIDS to improve the personal levelled barriers. The ous reporting of the existences of active FSWs in the study system wide barriers will need improved practices and settings [24, 25], the current study presents important health policies, particularly in providing patient-friendly results indicating the urgency to promote HIV testing for and accessible services. The societal levelled barriers will both the clients of FSWs and the FSWs in the study need a more broad societal approach, including raising districts as a strategy to prevent and/or reduce HIV infec- awareness in the community and enhanced discussions tion in FSWs and their clients as well as for the general about HIV/AIDS issues in order to normalise HIV in the community in the settings and across Indonesia. Indonesian society. In addition, further studies with a larger number of heterogeneous participants from differ- Limitations and strengths of the study ent sites especially urban areas are recommended as the The findings of the current study should be interpreted results of such studies can be transferable to larger com- with caution due to several limitations. Firstly, the study munities in Indonesia and other similar settings. participants were recruited from only two settings that Abbreviations have similar characteristics including: socio-cultural and AIDS: Acquired immune deficiency syndrome; ARV: Antiretroviral; religious norms and values, HIV/AIDS-related health FSWs: Female sex workers; HIV: Human immunodeficiency virus services, procedures to access health services, and the Availability of data and materials dissemination of knowledge and information of HIV and The original interview data are presented in the paper. the existence of HIV related services. As such, the Authors’ contributions findings of the current study reflect the situation of the NKF was involved in the design of the study, data collection, data analysis study participants in the study settings, which might be and interpretation, and in drafting thepaper, revising it critically for important different to similar clients in other settings with different intellectual content. ASS was involved in data collection, data analysis and interpretation, and in drafting thepaper. PALB was involved in data characteristics. The use of snowball sampling technique collection, data analysis and interpretation. E, EK, SSIW and IBC were involved could have also been a limitation as it might have in revising the paper critically for important intellectual content. LM was resulted in underrepresentation of participants outside involved in the design of the study, data analysis and interpretation,and in Fauk et al. 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Laporan Situasi Perkembangan HIV/AIDS & PIMS consequences if they feel uncomfortable about the topics being asked di Indonesia, Tahun 2016. Jakarta: Kementrian Kesehatan RI. Available at: during the interviews. They were also advised in advance that interviews http://www.aidsindonesia.or.id/ck_uploads/files/ would be recorded and would take approximately 45 to 90 min, and that Final%20Laporan%20HIV%20AIDS%20TW%204%202016.pdf collected information would be treated anonymously and confidentially. To 12. Fonner VA, Denison J, Kennedy CE, O’Reilly K, Sweat M. Voluntary ensure that the information provided will not be linked back to each counseling and testing (VCT) for changing HIV-related risk behavior in individual in the future, each participant was assigned a unique Study developing countries. Cochrane Database Syst Rev. 2014;9:1–28. Identification Number (P1, P2, ...). The participants signed and returned a 13. Painter TM. 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Barriers to HIV testing among male clients of female sex workers in Indonesia

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Medicine & Public Health; Public Health; Quality of Life Research; Social Policy; Health Promotion and Disease Prevention
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Abstract

Background: Frequent engagement of men in sexual encounters with female sex workers (FSWs) without using condoms places them at a high risk for HIV infection. HIV testing has been noted to be among important strategies to prevent HIV transmission and acquisition. However, it is known that not all men willingly undertake an HIV test as a way to prevent HIV transmission and/or acquisition. This study aimed to identify barriers to accessing HIV testing services among men who are clients of FSWs (clients) in Belu and Malaka districts, Indonesia. Methods: A qualitative inquiry employing face to face open ended interviews was conducted from January to April 2017. The participants (n = 42) were clients of FSWs recruited using purposive and snowball sampling techniques. Data were analysed using a qualitative data analysis framework. Results: Findings indicated three main barriers of accessing HIV testing services by clients. These included: (1) personal barriers (lack of knowledge of HIV/AIDS and HIV testing availability, and unwillingness to undergo HIV testing due to low self-perceived risk of HIV and fear of the test result); (2) health care service provision barriers (lack of trust in health professionals and limited availability of medication including antiretroviral (ARV)); and (3) social barriers (stigma and discrimination, and the lack of social supports). Conclusions: These findings indicated multilevelled barriers to accessing HIV testing services among participants, who are known to be among key population groups in HIV care. Actions to improve HIV/AIDS-related health services accessibility are required. The dissemination of the knowledge and information on HIV/AIDS and improved available of HIV/AIDS-related services are necessary actions to improve the personal levelled barriers. System wide barriers will need improved practices and health policies to provide patients friendly and accessible services. The societal levelled barriers will need a more broad societal approach including raising awareness in the community and enhanced discussions about HIV/AIDS issues in order to normalise HIV in the society. Keywords: Barriers, HIV testing, Male clients of FSWs, Indonesia Background the transmission of HIV within this population group Male clients of female sex workers (FSWs) (here on to [7–10]. Sexual intercourse has been reported as one of be known as clients) as well as the FSWs themselves the main routes of HIV spread in Indonesia, and men have been indicated as at high risk groups for HIV including these clients compared to women, are more infection [1]. Studies with this group in different settings susceptible to the infection with 59.2 and 40.8% respect- have reported that HIV infection is highly prevalent ively in last 5 years [11]. among them [2–6]. Frequent engagement in sexual Promoting access to HIV testing as well as voluntary encounters with multiple FSWs without condoms has counselling among individuals, including clients of been incriminated as one of the main contributors to FSWs, at risk for HIV infection has been considered as a key strategy for HIV prevention and associated with reduced risk behaviour [12–14]. The World Health * Correspondence: nelsen_klau@yahoo.com Organization has also recommended members of key Institute of Resource Governance and Social Change, Jl. R. W. Monginsidi II, populations, including clients of FSWs, who are at high No. 2, Kupang, Nusa Tenggara Timur 85221, Indonesia Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 2 of 10 risk for HIV infection to undergo HIV testing at least existence of these services and to access them regularly once a year [15]. However, studies and reports have for effective diagnosis of their HIV status. Affordability shown that access of the clients of FSWs to HIV testing refers to the economic capacity of clients of FSWs to in many settings is still low [16–20]. Barriers to acces- pay for transportation and HIV testing service. It also sing HIV testing services among these clients have been reflects the availability time to travel and access the reported elsewhere. These include: (i) clients’ fear of service. Appropriateness would relate to whether the HIV diagnosis which has been associated with stigma care meets the participants’ needs, including whether and discrimination, (ii) fear of losing a position in the the clients trust the professionals or care providers. Add- community due to societal norms of masculinity which itionally, the access framework further identifies the position men as physically strong (and HIV being associ- following five abilities of the populations that corres- ated with weakness), (iii) fear of losing the ability to be pond with the dimensions of accessibility: ability to self-reliant (having HIV being associated with having perceive (perception of the need of some service due to AIDS which could lead to loss of the ability to work), literacy level or cultural perceptions); ability to seek (iv) clients failing to make time for testing, and (v) the (could be influenced by personal values or knowledge of denial about being vulnerable to HIV, including low existence of the service); ability to reach (issues includ- self-perception of HIV risk [17, 19, 21, 22]. ing, transport availability, cost and the way in which the To our knowledge, the study participants, clients of services operates- e.g. issues whether professionally or FSWs, have not been the target of HIV prevention whether clients would feel stigmatised and develop fear programs or interventions in the study settings as well of their status been known to the wide community) [23]. as in Indonesia [11]. Likewise, accessibility to HIV Ability to pay (for instance, the affordability of services testing services and barriers to undergoing HIV testing is dependent on the cost of the services as well as the among clients in this nation have not been well docu- clients’ ability to pay for the services and ability to en- mented. Based on the educational backgrounds and pro- gage (e.g. when the services were not culturally appro- fessional experiences in the field of HIV/AIDS including priate to meet issues of clients of FSWS in Indonesia). in the study settings, the study authors had prior know- ledge of HIV testing barriers described above, and in- Study setting and design cluding: the lack of knowledge and information on HIV/ The selection of the study settings was based on several AIDS, poor availability and or accessibility of HIV/ factors including professional experiences of the AIDS-related health services, stigma and discrimin- researchers especially NKF and PALB who reside in the ation, and overall poor transportation to and from study districts. All researchers are health professionals the healthcare facilities. This qualitative inquiry aimed including medical doctors, nurses and health practi- to identify and document barriers to accessing HIV tioners, and are experienced researchers in public health. testing services among a sample of clients in Malaka The principal author (NKF) was an experienced manager and Belu districts, Indonesia. of HIV/AIDS programs targeting different population groups in the study settings and the senior author (LM) is a public health physician who chairs several commit- Methods tees related to migration, public health and chronic Theorectical framework disease including HIV/AIDS. Additionally, previous The current study was guided by access of health service studies in the same districts [24, 25] provided informa- (i.e.HIV testing service in this case) framework [23]. This tion regarding the existence of high numbers of local framework identifies five dimensions of accessibility of and nonlocal FSWs. health service including:approachability, acceptability, A qualitative inquiry was conducted from January to availability, affordability, and appropriateness) [23]. For April 2017 to identify barriers to accessing HIV testing example, approachability of services may relate to among male clients of FSWs from several rural areas in services being well known by participants and whether Belu and Malaka districts, Indonesia. The use of a quali- participants feel welcomed by the service providers. tative study design was useful in providing the re- Acceptability may refer to the cultural and social aspects searchers with opportunities to have direct interactions that influence the individual’s acceptance of care, and with the study participants and observe the situations which is judged by the person’s perceptions of the and setting where they lived, worked and interacted [26]. appropriateness of the care. Availability may mean that Because sex work is illegal, FSWs and their clients have the service exists and can be reached in a timely manner. not been the target groups for HIV services [24, 25]in This may be argued in relation to physical availability of these districts or in Indonesia. The two study districts the HIV testing service in this study settings and that can be considered as representative for the province as male clients of FSWs have the ability to know the they have socio-economic, cultural and religious norms Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 3 of 10 and values similar to the other districts in East Nusa The qualitative data analysis framework by Ritchie and Tenggara province. The study participants (n = 42) were Spencer [28, 29] was employed to analyse the data. This male clients of FSWs recruited purposively and additionally framework offereda systematic approach to manage the using a snowball sampling technique. The first stage was data and provided coherence and structure of analysis purposive where a staff member of a non-governmental [30–32]. The data analysis followed five steps including: organisation (NGO) that provides HIV/AIDS services in the districts and known to researchers was contacted to en- (i) Familiarisation with the data through reading list his help. Four initial participants known to be clients of transcripts line by line repeatedly, breaking data FSWs were provided with the study information by this into several chunks and commenting or labelling staff member. These four initial participants were then the data; asked to snowball and circulate the study information (ii) Identifying key issues, concepts and themes in a including researchers’ contact details to other people who coding frame and developing a coding scheme; were potential study participants. The inclusion criteria for (iii)Indexing the entire data by creating open coding participation were: (a) individuals who aged 18 years old or where similar and redundant codes were identified above, and (b) a male client of FSWs. Following the dissem- and the list made smaller and manageable. This was ination of information as describe above, 18 potential par- followed by creating closed coding where codes ticipants who met the inclusion criteria contacted the referring to the same theme were grouped researchers during the following 3 weeks. All of them con- together. This stage led to development of 11 codes sented to be interviewed voluntarily. After each interview, which were further synthesised to shortlist three participants were asked to distribute the same information overarching themes for the current paper; sheet to people they knew to be clients of FSWs. A further (iv) Charting the data which involved arranging 20 participants consented to participate in the study. appropriate thematic references in a summary chart Face to face open ended interviews were conducted to to enable comparisons across the interviews and collect the data from the participants using an interview within each interview; schedule. The development of the interview was informed (v) Mapping and interpretation which by the access of health service theoretical framework de- enabled examination of ideas that made up the scribed above. The guide explored broader issues includ- themes, and for relationship and association ing: factors that made the HIV testing services accessible between them to be seen. The framework analysis to participants: e.g. knowledge about HIV/AIDS and HIV approach enhances rigour, transparency and validity testing and HIV treatment issues; availability of HIV test- to the analytic process [33]. Analysis was ing and HIV medications; and other socio-cultural issues deductively (categories derived from the such as cost of the service and medications, attitudes and researchers’ prior knowledge on the topic and the behaviours of health professionals. Although thematic theoretical framework) and inductively (categories questions derived from this framework were employed to emerging purely from the data) [34]. guide the interviews, we maintained the essence of in-depth interview technique by having open ended ques- Results tions for participants to provide their broader experiences Participants’ profile (Table 1) (than would be the framework) of HIV testing services ac- A total of 42 participants were involved in this study. cessibility in these settings. A total of 42 clients of FSWs Participants’ ages ranged between 19 and 35 years, with were interviewed to reach data saturation [27]where no the majority of them being single (93%). None of the further new information seemed to emerge. Interviews study participants reported to have had HIV testing at with each participant were scheduled at their convenient the time of interviews. Participants reported multiple time and place and were conducted in Bahasa. All con- barriers to accessing HIV testing services and these are senting participants responded to all questions and none summarised in three themes (personal, health service of participants withdrew from the interviews. and social determinants), and further elaborated below. Data analysis Personal barriers The recorded data were transcribed into coding sheets Lack of knowledge of HIV testing and HIV/AIDS service and and translated into English by the research tea- lack of knowledge of the existence of HIV infection m.Although feedback from participants was not sought Although HIV testing service was made available in hos- after transcriptions, to maintain the quality and validity pitals and community health centres in the districts for of the data, data were crossed checked and comparisons all to utilise, findings of the current study indicate that between the researchers were conducted during the none of the study participants had undergone HIV test- transcription and translation process. ing. Lack of knowledge of the availability of this health Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 4 of 10 Table 1 Socio-demographic characteristics of the participants [HIV] test, they do not tell us to do it” (P32: 23 years old). Characteristics No. of Respondents N = 42 (%) Age “I do not know anything about it [HIV testing service], maybe because I hardly go to hospitals. 19 - 25 16 (38) Based on my experience, it seems like information 26 - 30 18 (43) about the test does not exist, I have a lot of friends 31 - 35 8(19) but nobody talks about it, or they might not know Job about it either ....” (P39: 25 years old). Motorcycle taxi drivers (Ojek) 15 (36) Construction workers 14 (33) The lack of general knowledge about HIV/AIDS services and the lack of knowledge about the existence of HIV Port workers 10(24) infection were barriers for taking HIV prevention mea- Unemployed 3 (7) sures among participants. For example, a failure to HIV Education testing meant that clients of FSWs did not know about High school graduates 35(83) their HIV status. In the current study, most participants Elementary school graduates 7(17) acknowledged that they were unaware of the existence Condom use with FSWs of HIV/AIDS, which seemed to be one of the factors precluding them from accessing available HIV testing Never 18 (43) services. The testimonials below allude to these asser- Sometimes 16 (38) tions: Always 8 (19) Number of sexual encounters with FCSWs in the past 6 months “I am not a highly educated person, just an 1 – 5 times 5 (12) elementary school graduate. I do not read 6 – 10 times 11 (26) newspapers or articles or book. I know nothing about HIV/AIDS and never think of HIV testing ≥ 11 times 26 (62) either” (P3: 20 years old). Number of FSWs they had sex with in the past 6 months 2 - 5 13 (31) “I would have looked for the [HIV] test if I knew 6 - 10 22 (52) about this disease [HIV/AIDS] and that I could be ≥ 11 7 (17) infected as well. How could I know if nurses and midwives do not provide us information about the service seemed to be among the barriers to accessing disease? I am busy with my work every day, from this service for participants across age and work groups. morning till evening ....” (P7: 28 years old). A total of 24 participants stated that they were not aware of these services. Assertions from a few partici- “I think it is possible for me to do the [HIV] test but pants’ testimonials are depicted below: how can I test for HIV if I am not aware that HIV/ AIDS exists? I do not know about the disease and the “I have been living here for the whole of my life and test. Every day I try to earn money, never think of visited our community health centre too many times diseases” (P15: 31 years old) but I am not aware of free HIV testing provided by the [local] government ....Nobody told me, the health “I never heard of it [HIV/AIDS]. There is no professionals in the community health centre did not information about that disease in the place like this say anything about it” (P11: 19 years old). [the harbour], everybody is busy with loading and unloading the materials. I have not tested for HIV “.... The testing might be available at the community because I do not know about the test and HIV ....” health centre but I haven’t heard of such service .... I (P28: 21 years old). have often accessed health services at our community health centre but not that one [HIV testing], I do not know anything about it” (P20: 22 years old). Unwillingness to undergo HIV testing and perceived seriousness of HIV infection “I never take HIV test because I do not know. Staff Unwillingness to undergo HIV testing was found to from the community health centre often visit be an important hindering factor among the clients communities here but they do not talk about the who were aware of the availability of free HIV testing Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 5 of 10 as well as counselling services in the districts. Low “When the time comes then I will do it [take HIV self-perceptions of the risk of acquiring HIV infection testing]. I do not want to do it now because I do seemed to be one of the reasons that made them un- not want to feel depressed if the result is positive” willing to take the test to discover their HIV status: (P30: 24 years old). “I have heard of the [HIV] test once I attended the “I do not undergo HIV test because I am scared if I HIV information session but I feel okay so far, am positive. I think I need to really prepare myself if I nothing to worry about. I do not think I need to take want to take the test. It will be a difficult decision HIV test because I am physically fine, I do not have because the result can change my life personally and any physical complaints” (P4: 22 years old). socially” (P2: 22 years old). “I do not have sex that often with them [FSWs], only once or twice in a month ....I think I am not at risk Health care service provision barriers of getting HIV infection, so I do not want to test Lack of health service trust in fear of disclosure of their HIV for HIV....I heard of the testing once ....” (P12: 19 status by health professionals years old). Lack of trust in health professionals was discovered to also influence the decision of FSWs’ clients to undergo “I do my work every day and physically feel well, I HIV testing as depicted in nine participants of varying don’t need that test. I think people would like to take ages. It was suspected that HIV status of people living a health test if they do not feel well or get sick for a with HIV/AIDS was made known to public by health certain period of time” (P27, 32 years old). professionals. As the consequence, the clients of FSWs did not want to access HIV testing service because they “I know about the test but why would I take the did not trust the health professionals in keeping the se- [HIV] test if I am not sick? It is weird if I am not sick cret of the test result or their HIV status: but taking the test, it would make people assume that I have done something wrong ....” (P25: 23 years old). “I do not test because I do not trust their mouths [health professionals]. They would tell their friends “I do not test for it [HIV] because I do not think I and family members if they know someone is infected can get the infection. I am fine, I feel great. Besides, I with HIV” (P8: 32 years old). do not easily get sick even though my work is physically demanding. I work for the entire day every “I know they [health professionals] do not keep the day, drive passengers from one place to another ....” secret of the health condition of patients. If I want to (P38: 31 years old). test for HIV, I would go to do it somewhere else but not here” (P22: 35 years old). Fear of a positive result of HIV testing was another rea- son supportive of the unwillingness of the clients of “Information about HIV positive people spreads so FSWs to access HIV testing services available for them. fast here, I am suspicious they [health professionals] Ten interviewees commented that knowing HIV positive are the ones who spread it. This is the reason I do not status could make them feel stressful, worried, and de- want to get tested” (P37: 24 years old). pressed; hence not taking HIV testing seemed to be a reasonable choice for them. Some of the assertions indi- “I do not accuse them [health professionals] but I cative of participants’ fear of knowing their HIV status guess they would tell their families or friends if they included: know that someone is HIV positive. .... I do not want to test [for HIV]” (P24: 23 years old). “I once thought of undergoing HIV testing but I am afraid of the result. It would be very stressful if I am positive. I have seen this on one of my neighbours Limited availability of medications including antiretroviral who is HIV positive, he is stressful. I do not want to (ARV) experience that” (P1: 25 years old) Limited availability of ARV also emerged during the interviews. It was brought up by two participants, com- “I am not afraid of the [HIV] test but worried about menting that ARV was hardly available in the districts the result. I do not know what to do if I get infected. and HIV/AIDS patients did not get treatment. This was This makes me feel not ready yet to take the test” indicated to be another factor that influenced them not (P14: 27 years old). to undergo HIV testing: Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 6 of 10 “I have thought of testing for HIV but I have not yet and work group categories commented that they could done it because I heard that ARV is very limited here. afford the medical and transportation costs as indicated It would be stressful if I get infected but there is no in the assertions below: ARV to treat the infection. I know a few HIV/AIDS positive patients do not take ARV because it is not “.... I can pay for health service or buy medicine, I available” (P16: 29 years old). guess it is not a problem. .... I just do not know about it [HIV testing], haven’t heard of it before” (P6: 20 “Knowing or not knowing my HIV status makes no years old). different to me because even if I am HIV positive I cannot access the treatment regularly because ARV is “Is there a test for the disease [HIV infection]? Maybe very limited. I know it is not available in the I can try sometime .... I can drive to the community community health centres” (P31: 26 years old). health centre or hospital, I have a motorbike .... the community health centre is not far from here” (P17: Fourteen study participants who had been exposed to 30 years old). information on HIV/AIDS confirmed that treatment to HIV/AIDS or ARV was made available only in one “.... I don’t think it would be difficult for me to access hospital. These participants appeared to know that the service [HIV testing], every day I pass through the patients diagnosed with HIV infection in community community health centre. I don’t worry about the health centres should receive further treatment at that buying medicine or the transport .... As I told you hospital. This further step needed for accessing ARV before, I haven’t heard of anything about the [HIV] seemed to be an additional barrier for voluntarily HIV test or the disease [HIV infection] ....” (P21: 22 testing, as could mean that if diagnosed, it would be a years old). process before receiving the required treatment. Testify- ing assertions included: “.... I guess maybe it is because I never think of getting tested for HIV .... No, I don’t think the costs to travel “ARV is only available in general hospital of Belu, to community health centre or to purchase medicine patients diagnosed with HIV in a community health are a big deal for me....I do not do it because I do not centre should go the hospital in the city to get the know at all ....” (P26: 33 years old). medicine or treatment, this discourages me to take the test ....” (P9: 26 years old). Social barriers “Even though someone is tested positive in a Fear of stigma and discrimination community health centre, he or she has to access HIV/AIDS-related stigma and discrimination are still HIV/AIDS treatment or ARV at the hospital [general prevalent in the districts where the current study was hospital of Belu] because treatment for HIV/AIDS is conducted and in Indonesia as a whole. Fear of being not available at community health centres. That means stigmatised and discriminated as the result of both if I take the test and get diagnosed with the infection, accessing HIV testing service and being an HIV positive then I need to go the hospital every time I feel sick and person seemed to be another precluding reason for the people will notice me” (P19: 21 years old). clients’ HIV testing. This not only kept them away from accessing HIV testing service to know their HIV status “I know about HIV testing but one of the reasons that but also other necessary HIV-related services, hence discourages me to do the [HIV] test is the limited making them even more vulnerable to HIV infection availability of ARV. I once read in a newspaper that and its impacts: ARV was not available at the general hospital of Belu for more than six months” (P42: 27 years old). “If I go and access the service [HIV testing] or take the [HIV] test then people who see me or know about “It is difficult to access ARV. HIV patients should go it would think that I am [HIV] positive and start the hospital that provides ARV .... It [the hospital] is gossiping about my HIV status. People are very quite far from here” (P10: 30 years old). sensitive about this issue [HIV], I have heard of people talking about the HIV status of others who did It was interesting that the cost required for medication the HIV counselling and testing” (P18: 21 years old). and transportation to the health services points seemed to not be barriers to accessing HIV testing among the “I do not want to be stigmatised. Everybody seems study participants. Twenty seven participants across age afraid of HIV, they would look at me with one eye Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 7 of 10 [cynical] if they know I do the [HIV] test. This has with multiple sexual partners without using condoms re- often happened to many HIV positive people and I ported in previous findings in Indonesia and elsewhere have seen it with my own eyes. I do not want the may put them at high risk for HIV infection [7–10, 35]. same thing happens to me” (P23: 26 years old). The findings of the current study reveal that despite having multiple sex partners and engaging in unsafe sex, “I do not want to do it [HIV testing] because people all the participants had never had an HIV test at the will start staying away from me if they know I do it time of this study. As such, they did not know their HIV [take HIV testing] or if I am [HIV] positive. I think status for further appropriate action. Access to HIV test- people do not want to get close to or make any ing services is an important finding which is well physical contact with HIV positive ones because they acknowledged to be central to HIV diagnosis and an im- do not want to get infected with HIV ....” (P29: 24 portant part of HIV care continuum [20, 23]. Although years old). the HIV testing services were available and affordable (free of charge) in the study settings, they were not “Stigma against people living with HIV/AIDS is still necessarily easily accessible to clients of FSWs in the prevalent here, that is why I do not want to know my study districts. The lack of knowledge about the avail- HIV status. If I do the test and the result is positive, ability of these services and low self-perceived risk for then sooner or later people will know it. They will HIV infection which are in line with previous studies’ start avoiding me, gossiping about me and this will findings [3, 12] were the main barriers for the majority worsen my condition ....” (P36: 28 years old). of the clients of FSWs to accessing the services. As pur- ported by the health accessibility framework [23], some of the participants abilities as well; for example, the Lack of social supports from friends and family ability to seek (e.g. due to cultural and personal values) The lack of social support played a role in influencing and the ability to reach (e.g. due to distrust of the pro- health seeking behaviour of the clients of FSWs. It fessionals) depicted in the responses of some partici- appears that all the study participants did not receive pants, seemed to influence the decision to access HIV support including information and emotional supports test service by the study participants. Some of these as- from friends or family members or health professionals pects, including limited availability of healthcare facil- to undergo HIV testing or access HIV/AIDS-related ities, poor affordability of medicine and travel to health services. This might be due to the topics of HIV/AIDS care facilities, and lack of knowledge of HIV problem, and HIV testing were absent from their daily conversa- have also been reported in previous studies as hindrances tion with friends and family members, and they did not to accessing HIV/AIDS-related health services [36–38]. consult health professionals either: As previously noted ‘the idea of knowing’ (a positive diagnosis) of the HIV status by individuals creates fear, “I do not feel any support from friends or family in and is a known barrier to accessing services [19, 21]. relation to HIV testing. We never talk about this After nearly 40 years after the initial emergence of HIV topic” (P5: 28 years old). knowledge, the current study indicates that the fear of an HIV diagnosis was still a hindrance to accessing HIV “My parents, brothers and sisters do not know about testing services by the participants. Further, Lahuerta my sexual behaviour, so they never say anything about and colleagues [21] and Darling and colleagues [19] have HIV/AIDS or HIV testing. I think they do not cited that HIV stigma and discrimination occur as the understand about HIV/AIDS or HIV testing” (P13: 33 consequences of an HIV positive diagnosis in some years old). populations. Stigma and discrimination may relate to poor approachability of service providers and poor ap- “None of health professionals tells me or encourages propriateness of health care service provision [23]. In me to undergo HIV testing. I would do it if a doctor this study, these were depicted in the participants’ or nurse helps me and if I am convinced that it is safe distrust of the health professionals – with the percep- and confidential. But to be honest, I never seek for tions that health professionals were capable of breaching help from health professionals” (P34: 25 years old). confidentiality of the HIV test results. Findings from studies elsewhere have shown that the lack of anonymity and confidentiality of HIV test results are important de- Discussion cision drivers to HIV testing [36, 39–42]. It is important This study aimed to identify barriers to accessing HIV to note that although stigma and discrimination were testing services among clients of FSWs in two Indones- noted to be barriers to accessing HIV/AIDS-related ian districts. The engagement of clients of FSWs in sex health services in other population groups [43–45], in Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 8 of 10 the current study, stigma and discrimination expressed the social networks of the current study participants or by the study’s participants were perceived rather than from other parts or outside of the districts, leading to an actual, as none of them had accessed HIV testing ser- incomplete overview of the barriers to accessing HIV vices or diagnosed with HIV infection. In supporting the testing among the clients. It is therefore reasonable to access framework and studies elsewhere [3, 23, 24], poor be cautious and to assume that the current study availability of ARV for HIV treatment was an additional findings are less likely to be transferred to clients from barrier to undertaking the HIV testing for a few study different sites with different characteristics. However, to participants whose perceptions were that diagnosis our knowledge these are the first qualitative study would not necessarily lead to HIV treatment required in findings on this topic, hence could be useful to inform the HIV care continuum. HIV strategies and interventions for this group in the Other socio-cultural issues including the absence of study settings or other similar settings in Indonesia. HIV/AIDS and dialogues in daily conversations, and the lack of support from families, friends, health profes- Conclusions sionals and significant others, since the emergence of This study reports several barriers to accessing HIV test- HIV scourge ~ 40 years ago [46], leave a lot to be ing services among clients in the study settings. Three desired. It is well established that social support from levelled barriers including at: (i) personal, (ii) health care peers, sex partners and families, including caring atti- service provision, and (ii) societal levels, were found. tudes, accompanying to healthcare facilities for testing, The lack of knowledge about the availability of HIV and helping with transport to health facilities increases mo- testing services was a major barrier for HIV testing tivation for HIV testing and reduces HIV testing-related among study participants. However, the clients who were anxiety [37, 47, 48]. It is plausible to indicate that the mo- aware of the HIV infection and the service did not tivation to improved testing availed via social support might undergo HIV testing either. Limited availability of HIV be a result of the lessening of fear of being avoided or treatment including ARV and perceived stigma and rejected by significant others, known to affect people living discrimination after being known to be HIV positive, with HIV, and as stated elsewhere, a barrier to HIV testing were significant underlying reasons for participants to [47, 49, 50]. Trust in significant others and facilitators of not access the HIV testing services. To improve the HIV testing such as the provision of incentives, implemen- accessibility to HIV testing and overall health outcomes tation of HIV testing at community or household level and by clients, a multilevelled approach is needed to address at private testing facilities and provider-initiated HIV test- all the barriers. These may include: the dissemination of ing which have been reported elsewhere [38, 49, 50], were information on HIV/AIDS and improved availability of not mentioned by participants. Given that there was previ- HIV/AIDS to improve the personal levelled barriers. The ous reporting of the existences of active FSWs in the study system wide barriers will need improved practices and settings [24, 25], the current study presents important health policies, particularly in providing patient-friendly results indicating the urgency to promote HIV testing for and accessible services. The societal levelled barriers will both the clients of FSWs and the FSWs in the study need a more broad societal approach, including raising districts as a strategy to prevent and/or reduce HIV infec- awareness in the community and enhanced discussions tion in FSWs and their clients as well as for the general about HIV/AIDS issues in order to normalise HIV in the community in the settings and across Indonesia. Indonesian society. In addition, further studies with a larger number of heterogeneous participants from differ- Limitations and strengths of the study ent sites especially urban areas are recommended as the The findings of the current study should be interpreted results of such studies can be transferable to larger com- with caution due to several limitations. Firstly, the study munities in Indonesia and other similar settings. participants were recruited from only two settings that Abbreviations have similar characteristics including: socio-cultural and AIDS: Acquired immune deficiency syndrome; ARV: Antiretroviral; religious norms and values, HIV/AIDS-related health FSWs: Female sex workers; HIV: Human immunodeficiency virus services, procedures to access health services, and the Availability of data and materials dissemination of knowledge and information of HIV and The original interview data are presented in the paper. the existence of HIV related services. As such, the Authors’ contributions findings of the current study reflect the situation of the NKF was involved in the design of the study, data collection, data analysis study participants in the study settings, which might be and interpretation, and in drafting thepaper, revising it critically for important different to similar clients in other settings with different intellectual content. ASS was involved in data collection, data analysis and interpretation, and in drafting thepaper. PALB was involved in data characteristics. The use of snowball sampling technique collection, data analysis and interpretation. E, EK, SSIW and IBC were involved could have also been a limitation as it might have in revising the paper critically for important intellectual content. LM was resulted in underrepresentation of participants outside involved in the design of the study, data analysis and interpretation,and in Fauk et al. International Journal for Equity in Health (2018) 17:68 Page 9 of 10 drafting the paper, revising it critically for important intellectual content. No 9. Miller GA, Mendoza W, Krone MR, Meza R. Clients of female sex Workers in writing assistance wasprovided in the production of this paper. All authors Lima, Peru: a bridge population for sexually transmitted disease/HIV read and approved thefinal manuscript. transmission? Sex Transm Dis. 2004;31(6):337–42. 10. Ramanathan S, Nagarajan K, Ramakrishnan L, Mainkar MK, Goswami P, Yadav D, et al. Inconsistent condom use by male clients during anal intercourse Ethics approval and consent to participate with occasional and regular female sex workers (FSWs): survey findings from Prior to the interviews, participants were informed of the voluntary nature of southern states of India. BMJ Open. 2014;4(e005166):1–8. their participation and that they may decide to quit without any 11. Kementrian Kesehatan RI. Laporan Situasi Perkembangan HIV/AIDS & PIMS consequences if they feel uncomfortable about the topics being asked di Indonesia, Tahun 2016. Jakarta: Kementrian Kesehatan RI. Available at: during the interviews. They were also advised in advance that interviews http://www.aidsindonesia.or.id/ck_uploads/files/ would be recorded and would take approximately 45 to 90 min, and that Final%20Laporan%20HIV%20AIDS%20TW%204%202016.pdf collected information would be treated anonymously and confidentially. To 12. Fonner VA, Denison J, Kennedy CE, O’Reilly K, Sweat M. Voluntary ensure that the information provided will not be linked back to each counseling and testing (VCT) for changing HIV-related risk behavior in individual in the future, each participant was assigned a unique Study developing countries. Cochrane Database Syst Rev. 2014;9:1–28. Identification Number (P1, P2, ...). The participants signed and returned a 13. Painter TM. 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Published: May 30, 2018

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