Introduction
Methods
Study Setting
APN in Uganda
Data Collection
Quantitative Data: APN and HIV Register Data Extraction
Qualitative Data: Interviews with Health Workers Involved in HIV Testing and Care
Data Analysis
Analysis of Quantitative Data
Analysis of Qualitative Data
Results
Quantitative Results: APN and HIV Register Data
Program Utilization
Index clients (N = 882) | Sexual partners (N = 1126) | |
---|---|---|
Number (%) | Number (%) | |
Sex | ||
Male | 366 (41) | 604 (54) |
Female | 509 (58) | 521 (46) |
Data missing | 7 (1) | 1 (< 1) |
Age | ||
Mean (range, SD) | 35 (16–76, SD 9.46) | 34 (16–68, SD 9.04) |
15–18 years | 13 (1) | 9 (1) |
19–24 years | 91 (10) | 108 (10) |
25+ years | 753 (85) | 986 (88) |
Data missing | 25 (3) | 23 (2) |
Refugee/national status | ||
Refugee | 418 (47) | |
National | 360 (41) | |
Data missing | 104 (12) | |
Partners listed by | ||
Refugee index clients | 481 (43) | |
National index clients | 516 (46) | |
Data missing | 129 (11) | |
Marital status | ||
Married/cohabitating | 655 (74) | |
Never married | 69 (8) | |
Separated/divorced | 96 (11) | |
Widowed | 34 (4) | |
Data missing | 28 (3) | |
Index client type | ||
Newly identified | 450 (51) | |
On ART not virally suppressed | 152 (17) | |
On ART with new risk (STI, new partner) | 134 (15) | |
Pre-ART, not started ART | 8 (1) | |
Data missing | 138 (16) |
Choice of APN Notification Option
Testing of Sexual Partners and HIV Test Outcomes
Qualitative Results: Health Worker Perspectives
Interview participant demographics (N = 32) | |
---|---|
Gender N (%) | |
Male | 17 (53) |
Female | 15 (47) |
Mean age in years | 32 (20–48, SD 7.52) |
Work experience | |
Mean total work experience in years | 5 (1–23, SD 4.50) |
Mean experience at health center in years | 3 (0.8–8, SD 1.95) |
Position at health center N | |
Counselor | 9 |
ART clinic in charge (nurse in charge) | 6 |
Linkage and retention facilitator | 6 |
Midwife | 3 |
Clinical officer | 2 |
Nurse | 2 |
Health center in charge | 1 |
Expert client | 1 |
Volunteer | 1 |
Community Drug Distribution Point project assistant | 1 |
Impression of the APN Program
Fear was also identified by the health workers as a reason why some index clients prefer self-notification. As described by health workers, some index clients believe that disclosing to sexual partners themselves prevents third parties from becoming involved and aware of their status. A visit from the health worker in the community—as would take place in the case of assisted notification (after the initial two-week self-notification window) or provider notification—could raise questions and lead to stigmatization, ostracization or abandonment by family and community members.Health worker (54-05-2-002), male: “They fear their partners, so they feel it is better if they can give this information to the health worker, and then it is the health worker who uses the knowledge of their training to convince the partner. It is better. Then they also feel safer.”
Barriers to APN
Health worker 54-10-2-002, female: “Because in our setting, women are supposed to have one husband, it is men who have very many women. . . . So, it is making women to fear disclosing. . . . They are afraid of violence of course, from the husbands, even the relatives of the husband. Because they will say, ‘You are cheating me, you are’ and even divorce.”
Health workers explained that in this setting, a positive HIV status is considered strongly linked to promiscuous sexual behaviour and can tarnish one’s reputation in the community.Health worker 54-05-2-002, male: “First of all, it is stigma. Yes. They feel that when they disclose their status to their partner, the partner is going to spread the news to other people whereby they are going to start talking ill about him or her. So, they feel stigmatized.”
Health worker 54-02-2-001, male: “It is hard because you know, in our locality here, it is like when you get HIV it is like you are a sex worker. . . . They may think you can get this virus through sex only. That is why they get a fear.”
Health workers reported that consequently, index clients who do agree to identify their sexual partners frequently omit casual partners and extra-marital relationships.Health worker 54-06-2-001, female: “Commonly, they will think someone is immoral, like sexually over-involved. . . . So, if you have HIV, directly translates that you have been involving in unsafe sex which is not a good representation. . . . especially women, they would like to marry more. . . . HIV, it will destroy now their market if she is interested in marrying again.”
While health workers reported that HIV is highly stigmatized in both refugee and Ugandan national communities, they explained that the negative consequences of HIV disclosure differ in severity for these two groups, and as a result, may act as a stronger deterrent to listing sexual partners for refugees than for Ugandan nationals.Health worker 54-03-2-001, male: “Usually, many of these clients, they are telling their partners whom they have got married to, but the outside one whom they have not yet married to, they are not mentioning this.”
Cultural differences, exposure to interpersonal violence while fleeing to Uganda, and lack of HIV awareness in their countries of origin were suggested by health workers to contribute to the more severe reactions to HIV disclosure seen in refugees compared to Ugandan nationals.Health worker 54-05-2-002, male: “Like for the refugees, in their culture, if somebody is HIV positive . . . we are supposed to do away with that person—either by sending him or her far away, or else you will kill the person . . . killing somebody, sending the person far away, for us [Ugandans] it is not there . . . targeting or stigmatizing [of] the person that is the greatest challenge we are facing here with the nationals.”
Health worker 54-07-2-002, male: “You know these refugees . . . they are traumatized. They are really difficult. Have much [violence] in spite the continuous counseling that we have always offered for them.”
Health workers explained that mistrust in the confidentiality of APN participation contributes to fear of listing sexual partners. This was said to be especially the case for refugee index clients for whom the APN process requires involvement of third parties such as interpreters to bridge language barriers.Health worker 54-06-2-001, female: “For us in Uganda we are now well conversed with HIV and super comfortable with result [receiving a positive diagnosis]. Yes, they [Ugandans] have personal reactions, but no violence. But up there [Sudan], . . . to them [refugees] it is a bit more fresh, it is hard for them to comprehend, so they may think you are terrifying them, you are lying . . . disclosing to them is not as easy as disclosing to nationals. You take extra care and time and massaging to bring them to . . . the point compared to the nationals . . . the information on HIV in Sudan is still limited. . . . There is still a gap, we should say maybe HIV stigma is higher there than here. So, a positive result is too bad news. Here it is just bad news.”
The close housing proximity in the refugee settlement also limits confidentiality of APN and discourages refugee index clients from listing their partners for tracing in the community.Health worker 54-03-2-002, female: “For the nationals, I speak the language, there is no problem in that. . . . The issue comes with the refugees, . . . because of language barrier it will force you to get somebody to translate. Then the issue of translation comes. At times these people [the refugees] they don't like [do not trust] the translator. There they may not disclose for you fully. You may not even get the appropriate what? Information that you wanted from this person.”
Refugee index clients who expect that tracing their sexual partners will not be feasible due to the large distances that would need to be traveled, sometimes elect not to mention sexual partners residing far away to the health worker.Health worker 54-07-2-001, male: “In refugees, we find that they . . . are highly populated . . . confidentiality in the community is not good, compared to the national where you find they are sparsely populated. [The refugee community] might see why have the health workers come here? Why have they called this man? . . . when you are going for that assisted partner notification.”
Interview participants reported that challenges in identifying sexual partners are compounded by a general lack of health worker training on counseling strategies to convince index clients to disclose their sexual partners. Most interviewed health workers stated that they had not received formal APN training. In most cases, only one or two health workers from each facility had been selected to take part in a 2–5-day APN training hosted in the region. Interviewees reported gaining knowledge on APN through alternative channels such as by learning while working, learning from colleagues who had received APN training and by acquiring skills during continuing medical education sessions offered by implementing partners.Health worker 54-04-2-001, female: “Let me talk of the refugees, he is [living] in Uganda [but] maybe he works in South Sudan. He goes there, stays there for maybe one year, comes here once a year . . . the sexual partners, they can be very many . . . he cannot possibly bring them from there to here for testing, so he says no I don't have any other women, this is my wife.”
Especially for refugee index clients whose husbands are away in South Sudan, information on how and where to contact sexual partners is not always available.Health worker 54-04-2-001, female: “So some of these . . . partners they are having, is just a sexual partners. So how are you going to bring her? . . . These one-day sexual relationships mostly are sexual workers. So, you even don't know them, maybe you got this person at night, just on the street. . . . you don't have any information about her.”
Following up on index clients and reaching sexual partners belonging to the refugee population in the community is often complicated by the high degree of mobility among refugees.Health worker 54-03-2-003, female: “On the side of refugees, they say most of their husbands . . . they are for army. They are there [South Sudan] for fighting. But few have their contact, the husband contact.”
Health worker 54-08-2-003, female: “These refugees the challenge with them again is the movement—they are not in one place. When they know that they are positive here [when the community becomes aware of their HIV status] . . . they will leave.”
Many sexual partners are not living in the refugee settlement and some may have even left Uganda and returned to their home country.Health worker 54-05-2-001, male: “For refugees those we are learning that the partner may be . . . moving around from one camp to another. So . . . it is very hard to get the partner.”Health worker 54-01-2-002, female: “Nationals . . . they are not up and down, they are not moving, like the one the refugees. But the refugees like in July you will be here, in August you will go to Sudan. They are just moving like that.”
Practical challenges of transport and communication further complicate partner notification. There are no vehicles available for carrying out APN services and health workers have to rely on public transportation such as boda-bodas (local motorcycle taxis) to trace sexual partners. This transportation frequently has to be personally financed by health workers who can be reimbursed later.Health worker 54-08-2-003, female: “The biggest challenge here with our settlement, like with the refugees, is the movement. Because you test one client here who say, ‘my partner is [in] Sudan’. How I am going to do that? It is hard. We usually tell . . . the woman [the index client], in case this man comes here, you bring this man to the facility. . . . We cannot trace with the health centers in Sudan. They are not coordinated. Maybe within Uganda, if they are in another district, we can call we have the contacts, we have all the contacts within here. . . . [But] the refugees they fear. They don't bring. They will even say this man has not come when the man has come and has gone back or he's around.”
The majority of people living in the refugee settlements do not have constant access to a personal mobile phone and consequently health workers have to locate sexual partners using directions provided by index clients. Even when people do own a personal phone, there may still be barriers such as signal strength, phone credit and lack of charging facilities. In this context, tracing sexual partners becomes a process associated with many practical and logistical challenges.Health worker 54-03-2-003, female: “For me, the biggest challenge in APN, it is about first of all, it is transport, though they give transport [facilitation]. But they give after you have done the activity. Yeah, so at times you have to go and do APN when there is no money, and like those who come from far, when a long distance, we are no longer reaching there because of the transport.”
Violence was considered another barrier to tracing sexual partners. Participants described cases in which health workers were met with hostility from the refugee community while carrying out APN activities. Violence prevents health workers from following up on certain cases in the community and makes it dangerous to carry out APN duties alone.Health worker 54-06-2-001, female: “Some of the challenges like in communication. Most of the clients are to be followed-up up to where they are, you reach home, they have gone to buy salt. Where they went to buy salt, they tell they went to fetch water. So that kind of things. Actually, most of them do not have phones, even in our files, so you follow them personally.”
Health worker 54-05-2-002, male: “For the refugees it is very difficult. Like my colleague last time tested a refugee positive and up to today . . . this refugee is still in denial that she is having HIV. And she doesn't want us to follow her, so . . . for self-protection, we have also declined to go and follow on her. . . . The refugees like the Dinka [and] the Nuer, they are always very aggressive. If somebody says no and you still insist, they can harm you. A colleague it happened one time. . . . they were like chasing her with even a Panga knife. . . . they do not want themselves to be exposed to other people, because we are health workers, people within the communities know that, so, they feel that once we started following her, people are going to get concerned.”
Health worker 54-08-2-003, female: “[W]hen we are following . . . we got challenges in the community. . . . we are not allowed to go individual. At least a lady and a man. You cannot go as a lady alone. You cannot. It is not safe. Like in such scenario you will be harmed.”
Health worker 54-11-2-001, female: “They [sexual partners] are fearing . . . [they think] if I will be found positive, I may faint, because I'll not want to . . . have HIV. . . . am I going to use the drug [ART] for life? For the whole of my life? That is now the fear.”
Other barriers to testing sexual partners include sexual partners’ preoccupation with being identified through APN when health workers notify them of possible exposure to HIV. Many sexual partners are more focused on figuring out why they are being singled out instead of learning about the possible HIV exposure and addressing the risk through HIV testing.Health worker 54-08-2-003, female: “[They are afrBuilding rapport was one of the keyaid] of knowing that they are positive. . . . They are going to take drugs. . . . They don't mind much about what the drug will do. They know that the drug helps them. But what they think is what people will say about them. Their perception about what people will say about them is too much.”
Health worker 54-08-2-002, male: “Some of them when you try to call them, they [sexual partners] . . . wanted you to tell why and who [gave their contact information], which is a bit tricky, which we don't do if it is not allowed by the partner [index client].”
Health worker 54-09-2-002, male: “They normally ask questions, ‘Why are you looking for me? So, what is the problem?’ Others at first, they get worried, because from nowhere you have sighted where he is, and you bump in and say, ‘I am so and so, and come for these services.’”
Facilitators of APN
Health worker 54-10-2-001, female: “You know, counselling is not easy. We first make the person friendly what what, maybe a week, two times. . . . Then you ask [about APN participation], after getting used to the person. The person will be a friend for you.”
Especially for the refugee population, health workers explained that extensive counseling is often necessary due to the lack of pre-existing knowledge and awareness about HIV.Health worker 54-02-2-001, male: “Ah yes, when you get used to them, definitely they will understand that you are solving their problems, they can enlist the clients [sexual partners].”
Health worker 54-07-2-002, male: “The refugees, most of them are uneducated, so because of that counseling will not be just be an hour or two, it can be like a day.”
By planning an ART refill appointment for two weeks after the diagnosis, an opportunity is created to circle back to the topic of APN after the index client has had time to process his or her results.Health worker 54-04-2-003, male: “But in most cases, there is denial stage. They deny their results. At first, we give them time, we give them time to first decide.”
Health worker 54-07-2-001, male: “[If] someone is not able to list for us [their sexual partners], then we tell him or her to go and think about it. So, when he [or she] comes back, sometimes comes when is a bit relieved, and now can be able to recall and can be able to list for us most of the partners.”
Health worker 54-10-2-003, male: “[Counseling a male index client] ‘Now you know your HIV status, will you allow us to disclose to your partner so that she can be responsible in caring [for] you in case you may fall sick? You can have, you can use her to come to be as a treatment supporter, to help you in this process.’”
Other counseling strategies that were mentioned included calling upon the responsibility of the index client to protect others.Health worker 54-04-2-003, male: “[Talking about sexual partner to index client] ‘Maybe that person has the infection but is not taking drug [ART] and is going to infect you more, you will develop an HIV strain that has not been, treatment of which is bad.’”
Health worker 54-04-2-002, male: “So, we usually tell them, ‘By telling us about your sexual partners, telling us about your sexual life, you are actually saving someone. You are not doing it for yourself alone, you are doing it for your other friends. Maybe that gentleman whom you have just slept with is now talking to your friend, talking to your cousin’. . . . And when you do that, they get a feeling of responsibility, they feel important, they know they now have a what? A role to play in the fight.”
Sometimes local leadership helps to design programs to decrease stigma in the community before health workers come to notify sexual partners in that neighborhood.Health worker 54-09-2-002, male: “We normally use our expert clients and some of them are able to identify them [sexual partners] by face. . . . we just send the expert client to sight areas of exposed people . . . who are in a relationship with other clients on ART, because they know them.”
Health worker 54-02-2-002, female: “We have a list of block leaders in the facility. If we have any outreach, we communicate to them, they mobilize the community and help us sensitize the community.”
Health worker 54-07-2-002, male: “Some we give them appointment, they come to the facility to test willingly. There are some who will say ‘Ah ah for me, I am busy, I am at my workplace, at shop I am selling. If you want to offer for me, come at this time, this is where I am.’”
Perspectives on Improving APN
One health worker suggested sharing best practices from those health centers that are performing well in APN to amplify best practices. One effective strategy that was mentioned was testing the index client and their sexual partner at the health center simultaneously—as if for the first time—to avoid the discussion of who is to blame for bringing the infection in the relationship. Another effective practice that was described was to set up a community testing site in a neighborhood where a sexual partner of an index client was known to reside, so that the partner could be tested alongside others in the community to avoid stigma.Health worker 54-04-2-002, male: “It is actually better if everyone [all health worker staff] hear about APN. Because it is really needed at every point, it is needed in maternity, it is needed in the IPD [inpatient department]. And then it is not something that has to first go through a clinician or a counselor. The moment you identify someone you can start talking to them and they can tell you everything about their partners, because that's the time when they can open up more, when they have just gotten what? They have known their status.”
Health worker 54-09-2-001, female: “The APN could be improved because at times we are following these people, at least there should be transport for the healthcare worker to go and follow the partner. And you cannot go alone, it needs at least two or three, because there might be violence or you can be fighting, then the other one can support you. . . . For transport is being facilitated yes, but the distance is also at times far, so the transport [facilitation] might not be enough. . . . In this nearby area it covers, but when you go deep it does not cover.”
Sensitization was thought to hold potential especially for specific refugee tribes from South Sudan like the Dinka and Nuer tribes who had been mentioned by health workers in relation to a number of incidents of disclosure-related violence in this setting. Health workers reported these tribes were said to have lived in relative isolation in South Sudan and therefore had had little exposure to HIV awareness interventions in the past. A solution they proposed was targeted sensitization activities working closely with community leaders to promote the acceptance of HIV and HIV testing and diagnosis, and thereby improve the safety of APN.Health worker 54-08-2-002, male: “APN, I think we need more sensitization of people, people should understand, like talk shows and radios what? Programs should be running. . . . People should be told . . . especially for the positive, the importance of this partner notification. Or sometimes if like here, [there are] issues of culture that could bury people from disclosing. Or you find another person is negative, the other one is negative what it means. People should be sensitized about these services, so that I, if I hear on the radio, [and] maybe tomorrow somebody calls me and notifies me [notification of possible HIV exposure] I know this could be ABCD [that this could be the APN program], people would be able to respond.”
Health worker 54-01-2-003, male: “I would think about community sensitization and community dialogue. You know, for one good thing in refugee settings, they hear and understand their elders better than any other person. . . . anything that comes from their opinion leaders, they take from there. So, when we involve their elders, the church leaders, the opinion leaders . . . telling them that HIV is not, is not one man's disease—it cuts across. It does not select whether you are Ugandan, you are Sudanese, you are an American, you are an Indian, does not select. It does not select, so all can be affected by HIV. So, one is community dialogue that would help so much.”
The Necessity of Optimizing APN for Refugees
Health worker 54-07-2-01, male: “Them being refugees, they are coming in . . . some of them were raped on the way, and some of them, we don’t know who raped them. And sometimes a woman [who] has been raped, fears to disclose to the husband because maybe the husband might chuck the woman. . . . They think maybe the husband will divorce her since she has been penetrated by unknown people.”
Health worker 54-03-2-003, female: “The refugees . . . their culture, when your husband is maybe in the army, [you are] remaining behind. [His] brothers who are here, can take control of you in everything. So, [the woman] can even go ahead go having the sexual intercourse with the brother, with the in-laws, without even knowing the status. . . . And you find one [man] maybe may even have like six women, twelve, eleven there easily.”
The presence of money and humanitarian aid makes refugee settlements attractive sites for trade and business, and transactional sex is common in this setting.Health worker 54-07-2-001, male: “[Refugees], polygamy is part of them . . . part of their culture. So, you find . . . this widow inheritance . . . that means . . . . a man takes over a woman of the brother, maybe that older brother has died . . . sometimes you find that like these refugees they are . . . four boys in the home, we are all married . . . three of us they are soldiers so . . . they trust me [the fourth brother] to escort their wives to Uganda as refugees, but for them they remain their side fighting. So, you find that me who has been entrusted, I end up start using these women because their husbands are not around.”
Interview participants explained that the refugee settlements are inhabited for the large part by women and children. Many of the husbands of these refugee women stayed behind in their home country to work or fight in the war. Family planning and HIV prevention are delicate subjects to discuss with these women as the societal expectation is that due to the absence of their husbands these measures are not necessary.Health worker 54-06-2-003, male: “This is a refugee setting area base camp . . . [there is a] small trading center here, because there are different tribes . . . because work . . . [is] bringing many people here, there is money. . . . Even sex workers we have here, since . . . just men workers are here, they are getting money, so you find now mostly people here . . . in night working two to three partners, making money.”
Health worker 54-07-2-002, male: “Our clients from the refugee side they are female . . . the reason being is most of the women are here. Some their husbands have died, some their husband has run to central Africa . . . so mostly the camp has been constituted by women. Find also that the women . . . someone who is married and has been staying with a man, to stay alone is always very hard. So, there are more chances they have been exposed to HIV.”Health worker 54-06-2-001, female: “It is more hard to get someone married and you ask them if they had unprotected sex outside . . . Some are positive, the husband [is] in Sudan. When they come here and we are telling them to start on family planning here, [they say] ‘but my husband is in Sudan’ and you don't want to say, ‘but you are not limited to your husband’.”