As shown in Table 1, the 4 focus groups were composed of peer educators and HIV test counselors working in community-based HIV service organizations (n=24), nurses (n=17), and physicians (n=2). On average, participants had more than 10 years of occupational experience serving key populations and people with HIV. About half were university graduates (n=23). Most (93%) had experience with HIV test counseling. With one exception, all were familiar with the concept of public health contract tracing but not necessarily APN. Most (81%) had contacted someone about possible exposure to HIV as part of their professional duties. Participants drew upon these experiences and their work in general to assess the facilitators, barriers, rewards, and drawbacks to implementing APN nationally and in local health care facilities.
Table 1
Participant characteristics [n=40]
Characteristic | n (%) |
Age in years (mean ± SD) | 38.6 ± 7.7 |
Female | 24 (57.1) |
Education | |
High school | 10 (25.0) |
Diploma | 7 (17.5) |
Bachelor’s degree | 21 (52.5) |
Post-baccalaureate | 2 (5.0) |
Occupation | |
Community health worker | 21 (52.5) |
Nurse | 17 (42.5) |
Physician | 2 (5.0) |
Occupational experience (mean ± SD) | 12.4 ± 7.3 |
Have you had any experience delivering health services to people with HIV? | |
none | 0 (0) |
a little | 6 (15.0) |
a lot | 34 (85.0) |
Have you had any experience delivering health services to prison inmates? | |
none | 11 (27.5) |
a little | 17 (42.5) |
a lot | 12 (30.0) |
How often do you conduct HIV test counseling? | |
never | 3 (7.5) |
seldom | 11 (27.5) |
often | 26 (65.0) |
Have you ever informed someone of having tested positive for HIV? | |
never | 9 (22.5) |
a few times | 11 (27.5) |
many times | 20 (50.0) |
Have you ever contacted someone about possible exposure to HIV? | |
never | 8 (20.0) |
a few times | 13 (32.5) |
many times | 19 (47.5) |
How much do you know about HIV partner notification? | |
nothing | 1 (2.5) |
a little | 22 (55.0) |
a lot | 17 (42.5) |
Legend: SD, standard deviation |
Perceptions of Assisted Partner Notification
While not always fully familiar with the concept of APN, participants could envision its potential and were intrigued at its novelty and possible utility. As one peer educator exclaimed:
Helping clients to notify their exes and asking them, “Have you had any partners before? Have you ever had sex?” – it never happens. That is beyond my thought. I think it is great to think of reaching out to people, tracing people.
Another participant remarked that while the idea of contacting exposed partners was not new, working collaboratively with the client to identify and contact them was novel. He reminisced that “in the old days, we used to disregard who’s the partner.” He went on to explain that in his view “case findings would be much higher if patients directly disclose who their partners are.”
Participants said that clients whom they counseled often reported practical or emotional difficulties to informing their partners of an HIV diagnosis. They perceived that confidential notification services could relieve reluctant clients of the burden of telling their partners themselves. One nurse recounted the dilemmas of a male client who had yet to tell his wife:
The husband was incarcerated. He was concerned as his wife wanted to have another child. [Yet] he had not opened up about his [HIV] status to his wife. [He asked] “What should I do? I am afraid that my wife might get infected.
For this client, disclosing that he was HIV-positive could end his wife’s dreams of safely conceiving another child, and might open him to unwanted questions as to how he had contracted the virus. Participants agreed that APN services could prove useful in helping clients to resolve such dilemmas.
Persuading Clients to Name and Notify Partners
While the idea of offering APN services was met with enthusiasm, delivering them was seen as needing careful presentation and management. Clients whom they serve frequently are reluctant to name or notify a partner, and their reactions to being asked to do so are mixed. A nurse explained that some clients say, “I don’t want to transmit this to other people; others would be like, ‘Whatever, I don’t care’.”
When names were not forthcoming, participants had to find ways to draw out such information and methods differed. One participant’s view of soliciting names was not unlike that of a detective uncovering clues. “The job of the buddy (counselor) is to dig up information as much as possible from the client.” He went on to explain that such information could be used to probe clients as to where and with whom they may have shared exposure to the virus.
Building rapport was perceived as essential to persuading clients to name their partners. Forging an empathetic connection, however, could require providers to proceed slowly and approach the client and topic with considerable caution. For one peer educator, this was not unlike dealing with a frightened animal:
Despite being a health care provider, if we want to approach them – it’s like we’re getting into a cat’s cage, we need to be like a cat so that we can just talk comfortably with them.
Others recommended building rapport by calling attention to a shared background. For example, one peer educator explained that he purposively discloses to male clients who have sex with men that he does too. He explained, “I just open up my status to speed up the process.” Another described the successful tactic of employing female-to-female patient/client gender-matching to open conversations about HIV exposure when approaching wives.
In addition to rapport, correct timing was seen as critical. A nurse warned that introducing partner services too early could jeopardize efforts to build rapport and undermine long-term relationships that facilitate APN acceptance. She went on to explain, “If we suddenly aim for the partner, the trust that we have been building can disappear in a moment.” Another participant remarked, “Clients are usually not yet open in the first or second meeting. They sometimes start to open up in the second or third meeting, and sometimes it takes more than three meetings.”
Maintaining provider-client confidentiality also constituted a crucial APN element. To identify at-risk partners, clients need to share information that might be embarrassing, stigmatizing or even legally self-incriminating. Consequently, it was important for clients to feel that APN sessions were shrouded in professional secrecy. One participant explained, “You can’t be a “bucket mouth” in spilling to others what a client has said. Another participant reported that she implicitly reassured clients that:
Everything that you share with me is only between you, the doctor, the nurse, and God. No one else would know. We will not disclose any single thing you share with us, except on medical or legal ground.
Maintaining provider/client confidentiality also meant conversing within a conducive environment where others could not overhear. One nurse explained, you “have to talk to the patients in a very confidential way, in a private room, not at the patient’s bedside that is only covered with a curtain.”
While participants agreed with the importance of tracing partners to warn of possible exposure, they also strongly agreed that not every partner needed to be identified or told. They firmly held to the belief that clients have the right not to name or to disclose being HIV positive if their personal circumstance did not pose an HIV threat to others. One participant explained:
If the client is adherent to therapy and has no risk to transmit infection, we need to respect his right to not disclose his status. It is different if the client is an active IDU, is not taking ARV, and suddenly is about to get married. That’s when we need to intervene.”
In instances where the client might not be able or willing to notify a partner or no one might be harmed, providers reported weighing their role in soliciting names for public good against honoring clients’ right not to tell.
Locating Partners
Finding partners once they are named poses a new set of challenges according to participants. Locating a partner could be relatively easy if the client and partner were closely related or communicated regularly. In contrast, tracing a casual partner with whom the client had little to no contact post-exposure could prove formidable. Having multiple casual partners escalated the difficulty, especially if it involved a chain of exposure:
One person can meet one person, and another person, and so on. They meet through dating apps. Maybe after they meet, they’ll just lose contact. So, it’s difficult.
The caseloads of many of the focus group peer educators and HIV counselors included individuals of both genders who exchange sex for money. Participants strongly agreed that locating commercial partners could prove tough. Due to stigma and legal complications, so could finding partners exposed through sharing drug equipment or sexual behaviors with someone of the same sex. Such behaviors often are conducted in secret with little personal information exchanged that later would permit HIV notification.
Partner Notification
Deciding to inform a partner of HIV exposure can be exceedingly stressful. Fear of the consequences is not uncommon, and the providers offered numerous examples of clients who refused or shied away from disclosing the information themselves. Yet other clients appear to prefer to self-disclose over other choices. APN offers three options that clients can select in informing their at-risk partners, and not all partners need to be notified using the same method.
Self-disclosure notification. Because informing others of being HIV-positive can go both well or badly no matter how it is disclosed, participants perceived that it was ethically important to warn or remind clients of the possibility that revealing their status could have negative consequences. One peer educator regularly queried his clients about their personal readiness to disclose:
Are you sure you want to open up your status? Because, once you open up your status to someone, that person will never forget. So make sure when you open up your status, you have dealt with yourself, then you can deal with someone else. If you have not befriended your status, you better not disclose it to other people.
Another participant added:
I always say that: “if you disclose your status, you have to be ready for two things. The first thing is to lose, and the second thing is to be left. So, you must be ready to be left and to lose. Are you ready? If you are, I will help you. But if you’re not ready yet, we’ll just wait until you’re ready. Until you are totally sure, you have dealt with yourself, make peace with yourself, you must think carefully about its positive and negative impacts on your relationship.”
But even when clients were sufficiently coached and ready to notify others, it was the recipient of the information who might be unprepared to hear the disclosure. The threat of shared exposure to a serious illness can negatively color partner relationships, while misinformation about how HIV is transmitted can worry family and friends unrealistically about possible contagion. Consequently, coaching clients in how to conduct self-disclosure and impart correct information was seen to be an important part of APN.
Drawing on their HIV counseling experience, providers gave examples of tutoring clients in how and what to say when first disclosing their HIV status. Gradual disclosure followed by incremental addition of further details was commonly recommended as was carefully crafting the message. As one peer educator explained, the client cannot abruptly say, “I’m HIV-positive. The PLWH needs to open the discussion between themselves and their partners smoothly.”
When direct methods failed or seemed too onerous, indirect methods might be recommended. A peer educator recounted how a client he counseled persuaded his mother to tell his spouse for him. A nurse suggests that reluctant clients use printed HIV information:
You could bring home a brochure. That’s a strategy I have used with patients. Bring these brochures. Let your wife read them or put them on the table. When she asks you about it, that’s when you can open-up a discussion about your status.
Another suggestion was to leave HIV medication out where it could be found easily. Having indirectly forced an initial conversation, a fuller discussion could ensue once the client’s status was out in the open.
Provider assisted notification involves a client choosing to have a trained provider deliver the news, typically without revealing the identity of the index person. This method demands that the notifier approach a stranger with the unpleasant information of exposure to a serious virus. Telephone contact is commonly used by HIV health providers to break the news but was considered tricky in a country with a high number of telephone scams. The providers predicted that a health notifier’s call might be mistaken as fraudulent:
The challenge will be great in Indonesian culture. People will ask, “From who did you get my number? Why am I being contacted? I haven’t done anything.”
Meanwhile, participants worried that visits by a health notifier to a partner’s home, office, or favorite hangout might not go unnoticed in Indonesia’s tight-knit neighborhoods. Keeping such discussions confidential could prove especially difficult in homes where partners and their extended families live in close physical proximity.
In making a notification, participants recounted the difficulties that they likely would face as messengers in conveying unwelcome HIV information:
If we just come visit the clients’ partners and tell them, “Your husband is positive,” Ouch! They will throw a cooking pot at us! I personally would rather encourage them [the clients] to disclose.
Even participants with considerable street outreach experience in approaching strangers about HIV prevention flinched at the prospect of contacting partners in the privacy of their home with sensitive and potentially upsetting information.
Contacting partners of men who have sex with men was seen as especially challenging. In linking clients and their partners to HIV through same-sex behavior, a notification could inadvertently became public and place both men at risk for social stigmatization and moral judgement. Another provider remarked about the special notification challenges with older adults. He explained that “they are less open [than younger clients], so it’s hard to find out the chain of transmission.” Female partners also were considered especially hard to approach for provider notification, especially if they resided in a multi-generational family unit where maintaining confidentiality was complicated by proximity. Based on awareness of a long Indonesian history of societal paternalism, one provider explained:
If the client lives in the in-law’s house. That can be tough. It is much easier when the index patient is the husband because husbands have all the rights. But when it is the wife who is diagnosed first, that can be tough.”
Pregnant women appeared especially vulnerable to fear of harsh outcomes. An outreach worker repeated the words of a female client, “If I disclose my status while I’m pregnant, then he’d leave me. Who will take care of me?”
Not knowing what to advise an expectant mothers facing such fears, the participant went on to explain his view:
If they want to disclose it later after the child is born, let it be. Maybe they also have their strategy. But if they had to disclose now, while having their pregnancy, that would concern my sense of humanity.
Other participants were quick to add that many clients, and not just partnered and pregnant women, were subject to fears of rejection when disclosing their status. “They’re afraid of being left,” said one peer educator. “The fear that the partner would leave is especially strong.”
Unfortunately, such fears seemed justified for both genders when the revelation of having contracted HIV treads on already shaky personal ground. Participants reported that not all HIV clients have families or significant others who accept their lifestyles, drug use, and/or other societally defined immoral behavior. When coupled with HIV, such disapproval could result in shunning, abandonment, or being forced out of partner or family relationships. Conversely, some clients were seen to proactively adopt withdrawal or social distancing tactics to avoid such conflict.
Participants agreed to feeling ill prepared to facilitate disclosures that involved revelations of infidelity, same-sex relationships, drug use, or other behavior considered taboo. The thought that their actions could result in dissolution of a marriage or other partnership was especially troubling. “We’re afraid if we made a client disclose to the partner, but then they got separated, in the end we’d be blamed for it.” They also worried about the professional ethics of delivering notifications that could result in such outcomes.
Participants pondered if unmarried clients or those estranged from their families or partners would perceive APN services as potentially useful. A prison nurse described the plight of the incarcerated men whom she serves:
Most of the prisoners are the ‘lost boys.’ They don’t have family. They live on the street or they say the family lives in the village. Only one or two people, perhaps gave us a chance to explain to their family. The rest were the lost boys. No family, or family in the village.
Of course, prisoners are not the only clients who are estranged from their family or community of birth. The participants’ caseloads include rural, unmarried youth of both genders who flock to the city for excitement, employment, or to avoid the prying eyes of family members. Testing HIV-positive can be hard for someone to self-admit to a family who was left behind.
Dual notification teams the provider and client in planning and delivering a notification. A major challenge to dual notification lies in finding a way to invite a partner to attend an HIV APN session without explaining why. One participant relayed what a client told him in this regard:
My challenge is when I wanted to go to an AIDS NGO with my wife, my problem is the way that I should tell her. What should I say about it? What kind of place is it? I still find it hard to say that this is the place to do an HIV test.”
The group’s recommendation was that clients could inform their partner that a joint appointment had been scheduled to discuss a health problem. No further group advice was offered, however, as to what clients might say if asked why an appointment was needed. They did agree, however, that providers should never mention HIV when making initial contact or requesting partners to see them for a health reason.
From a provider’s perspective, APN dual notification offers the advantage of saving them from the challenges and full burden of informing a stranger about HIV exposure. Although the provider and client form a team in telling the partner, the final decision-making and aftermath of disclosure in APN rests primarily on the informer and informed. As one participant envisions:
The patient holds the central role, while the counselor would explain what they can do next when the couple are sitting down together. The counselor would describe the possibilities, but the couple is the one to make decision, not the counselor, whether they would keep their relationship or anything else. That’s for you and your partner to decide. My job is to provide the correct and appropriate information.
Despite APN’s promotion of client-driven services, participants’ remarks indicate keen awareness that neither providers or clients have total control over the notification process or its outcome. Organizational culture and its socio-economic environment also influence the APN process and its results.
Organizational and Legal Contingencies
FG participants were united in maintaining that organizational contingencies could both facilitate and hinder the delivery of effective APN services. They perceived a wide gap between the ambitions of those who want to develop APN and the reality of implementing it in many Indonesian health care settings. In discussing these gaps, four themes emerged.
First, participants were aware of resource shortages in the Indonesian healthcare system that could limit successful adoption of APN services. One health care counselor described the scarcities of the rural prison where she worked:
Maybe in the prisons in the city there are counseling and treatment available. But in the prisons in smaller towns, we can only do counseling. My prison is in the middle of a jungle. We cannot get the medication. Our local community health center and local hospital don’t have it either. So, we are just confused. We have no idea what to do with the patients.
Other participants reported similar shortages where they were employed.
Second, front-line staff in many clinical and NGO settings were thought to lack the knowledge, skills, and professional confidence needed to counsel patients effectively about APN:
Several times when I asked my team to give education to the patients, they were not confident. Because they’re emptyheaded. They said, I’m afraid I cannot answer if the patient asks me.
While not necessarily sharing such a dim view of health care staff, group consensus held that, “All professionals, especially the doctors and nurses who communicate to patients every day, need to have ‘breaking bad news’ training.”
Third, merely offering notification training was not perceived as adequate to ensuring a capable cadre of APN staff. Participants remarked that the constant staff turn-over common to many Indonesian health care settings could reduce the number of trained providers over time:
The problem is not that they have no training, they have. But the problem is with the structure of the health care provider. In the province level, the human resource would change every three months. The head of the community health center is changed. And the staffs that had been trained did not transfer their knowledge to their successor. That becomes a problem. The second problem is the human resource. When someone is hired to deal with the HIV problem at a policlinic, that person also do many other things in the other policlinics, so they are not focused on providing the service.
Consequently, provisions would need to be made within the health care system and at the local level to train new APN staff as they were hired.
Fourth, participants were concerned that APN might not be equitably delivered across medical sites and to all clients. Professional experience convinced them that negative attitudes and stigma toward people with HIV was built into the organizational culture of some medical facilities and held by some medical staff. They told of having encountered health care providers seemingly unable to counsel people whose lifestyle choices differed from their own. They also worried that notification of more challenging cases of HIV exposure might hinge on the whims or biases of individual medical providers. In such instances, providers might write their own rules for these services, selectively offer APN services to some clients but not others, conduct notifications without the client’s permission, and possibly breach client confidentiality.
Finally, uncertainty as to Indonesian law governing disclosure of patient information posed a potential stumbling block for many participants in contemplating APN. For example, a nurse questioned if discussing a client’s private or secretive behavior in the presence of a third party would be legal:
Nowadays, the trend at the inpatient units is to have more MSM patients. But, the MSM patients at the inpatient wards usually come with their wives. Then it’s easier for us to do notification since the wife is the legal partner, right? But if accompanied by a friend and we don’t know about the wife, that’s the challenging case.
Another participant warned that programs attempting to launch APN would first “need to have a solid ground on the country’s regulations” to protect the rights of clients, their partners, and the health care providers who notify them.