Findings from the qualitative analysis are organized into three main themes that provide insight into experiences of peer support: (1) impacts of peer support on linkage to and engagement in HIV care for PWID LHIV; and (2) mechanisms through which peer support operates to encourage linkage to and engagement in HIV care; (3) challenges and potential areas for improvement.
Impact of peer support on testing, linkage to, and engagement in HIV care among PWID LHIV
Participants had overall positive experiences of peer support. Several key benefits of peer support on PWID engagement in the HIV care continuum were identified: facilitating linkage to HIV testing and referral to care, enhancing uptake of ART among newly-diagnosed individuals and those ‘lost to follow up’, and supporting ART adherence.
HIV testing and referral to care
Participants described peer support workers as their first link to HIV services, with many reporting that peer support workers enabled them to access HIV testing, subsequently enrol in treatment, and continue to engage with care. One individual described the essential role played by the peer worker in introducing him to HIV-related health services:
“I know about peer support programme from the clinic, it’s part of the clinic’s services. It’s him [the peer worker] who told me, who outreached to me, who gave me information, helped and referred me. I got all that knowledge from peers, not from services.” (Male, PWID LHIV, 41, Bandung)
Peer support workers commonly played a bridging role between PWID LHIVs and service providers, while maximizing the reach and quality of services. For many programme staff and service providers with limited capacity to pursue PWID LHIV who may be at risk of serious illness or otherwise lost to follow up, peer support workers played the critical role of contacting ‘hard to reach’ PWID LHIV and facilitating the continuation of their engagement with care.
"The relationship between peer support workers and services certainly affects service access for PWID LHIVs, because when the relationship is good they can maximize their services with us.” (Male, Service provider, Bandung)
“Many individuals in the community feel helped when there is peer support. For example, they are PWID LHIVs who are difficult to contact and on average case managers helped." (Female, NGO programme staff, Bandung)
Uptake of ART and loss to follow up
Participants overwhelmingly described peer support as a helpful intervention in relation to improving the uptake of ART among PWID LHIV. PWID tend to avoid accessing ART until their health deteriorates . This happens for many reasons, including due to misinformation about HIV and ART, fear of arrest based on their substance use, and stigma and discrimination . The support provided by peer workers, including checking in on PWID LHIV through home visits, over the phone and text message and directly accompanying individuals to the clinic, is often the only link that marginalized PWID LHIV have to HIV service providers.
“If they drop out of the treatment, we do a home visit, and then continue to accompany them to the service until they can access it again.” (Male, Peer support worker, 36, Jakarta)
“The challenge is usually that the PWID LHIVs we accompany are in a critical health condition. There are some who feel self-conscious, but we explain that if you don't seek treatment you may die soon." (Female, Peer support worker, 31, Jakarta)
Loss to follow-up from care among refers to individuals who initially accessed HIV testing services but did not return to the clinic to access follow up services for three months or longer . Loss to follow up was described by participants as a critical issue in the community of people who use drugs in Indonesia. Peer support workers played a critical role in supporting individuals ‘lost to follow up’ to reconnect with health and support services and re-enrol on ART. Participants described how speaking with and accompanying someone mitigated that individual’s anxiety and fear regarding treatment and medical settings, and increased the likelihood that the PWID LHIV would agree to seek services at the clinic.
“There are some PWID LHIVs who had not accessed ARV for almost six months. The peer support workers encouraged their peers to access ARV. [The outcome] is good, since many PWID LHIVs returned to access their ARVs." (Male, NGO programme staff, Bandung)
“Monitoring of loss to follow-up is actually a health service task, but if we don't wake them up they will not do anything. The health authorities themselves do not follow up. When I asked peers who stopped ART, ‘Did any of the health services call or remind you or refer you back to treatment?’ the answer was no.” (Male, NGO programme staff, Bandung)
Loss to follow up often occurs when people who use drugs are arrested and incarcerated. There is no ART provision in police detention in Indonesia, which can last several months . ART provision in prisons is largely dependent on the willingness of family and friends to coordinate medication pickup from the clinic, liaise with prison officials, and deliver the medication to the prisoner. The family, together with peer support workers, must advocate on behalf of the PWID LHIV at each individual ART clinic and prison, in order to be able to deliver the medication to the prison. Peer support workers most often fill this crucial intermediary role, which enables incarcerated individuals to access ART by helping them procure the necessary referral letters and directly bringing them the medication.
“There was a person using drugs and living with HIV in prison. Our peer support workers take their ARVs from the clinic and deliver it to the person in prison." (Male, NGO programme staff, Bandung)
Participants described how peer workers helped people who were newly released from prison to access ART by accompanying them through the administrative processes related to ART enrolment.
“There are people who use drugs who have just been released from prison. Usually they don't have an ID card or health card. I once took care of administrative letters like that." (Male, Peer support worker, 36, Jakarta)
“As soon as I was free from prison I immediately accessed my medicine at Pengayoman Hospital. The one who helped me was the peer support worker." (Male, PWID LHIV, 36, Jakarta)
Improved ART adherence
Participants underscored the noticeable positive impact that peer support had on ART adherence. Several peers reported that peer support workers played a key role in how they engaged with treatment by regularly reminding them to take their medication through a phone call or text message, in person through regular home visits, and by providing ongoing encouragement and motivation when challenges arose.
“He [peer support worker] always reminds me to be compliant, to set a phone reminder.” (Male, PWID LHIV, 31, Jakarta)
“Peer support is very influential in my ART medication adherence. When I am out with other peers around the time when I have to take my meds, they always remind me. This has already become a habit, a norm in the community of people who use drugs.” (Male, PWID LHIV, 41, Bandung)
“Picking up my medication has become easier. It’s easier to access services because my peer support worker is there.” (Male, PWID LHIV, 45, Bandung)
One way in which peer support workers enhanced PWID LHIVs’ self-efficacy related to ART through their interactions was by embodying living examples of the success associated with treatment maintenance and continued engagement in care. Some explained how learning about or observing the treatment of their peers exemplified that treatment visibly improved the health and quality of life of PLHIV and that adherence was possible and realistic. One PWID LHIV explained how peer support workers’ treatment perseverance offered hope and contributed to his decision to initiate treatment. Emphasizing the shared lived experience of using drugs, living with HIV, and successfully adhering to treatment helped keep him engaged.
“We just keep motivating them, so that they take their medicine regularly. I am an example showing that those who adhere to ART are healthy.” (Male, Peer support worker, 45, Bandung)
Support mechanisms in peer support
Participants identified a range of support mechanisms through which peer support was perceived to benefit PWID LHIV. These included: emotional support, improved HIV knowledge and awareness, assistance with navigating complex bureaucracy, increased trust in health care services, enhanced confidence and motivation, and enabling HIV, primary care and social support integration. These mechanisms were articulated in the context of improved linkage to and sustained engagement in HIV care.
Participants described how peer support workers provided advice, solidarity and a listening year when they needed encouragement to get tested, initiate ART, and adhere to the medication. The participants who had worked with a peer support worker to access HIV services reported feeling comforted knowing that the peer worker had undergone similar challenges. Peer support workers described the types of social support they offered, as well as the value of having shared similar experiences with clients:
"When people just find out their [HIV] status, sometimes they don't accept it. We help them by providing information about HIV, we explain the pros and cons of not taking the medication. We also help them access BPJS [health and social security] and legal aid." (Male, Peer support worker, 31, Jakarta)
“My experience is almost identical to his. I am also [HIV] positive, I'm also a drug user, so we end up wanting to share information with each other. From getting counselling to lab checks to starting medication, and sticking to taking it, to complaints related to drug use or medication problems, we bridge that divide so that the person does not feel alone. What he is experiencing I also experienced. " (Male, Peer support worker, 42, Bandung)
This emotional support was credited with increasing PWID LHIV sense of commitment to the treatment regimen and motivation during periods of vulnerability or ill health. One participant explained that peer support enabled his continued adherence to treatment and engagement with care.
"Once I got support from the peer worker, I was constantly being pushed not to give up, I had to commit." (Male, PWID LHIV, 41, Bandung)
Another participant described how talking to a peer support worker at a time when her emotional and physical health were deteriorating helped get her back on track to accessing healthcare.
"It had been almost a year and a half that I'd been neglecting doing VCT, I had depression, it had been a long time since I took care of myself. Finally after one of the peer workers talked to me, I asked him to take me to the clinic, and he said, let’s go. Before I got tested, I used to get ill often." (Female, PWID LHIV, 45, Bandung)
Enhanced HIV awareness and knowledge
People who use drugs in Indonesia receive information about HIV prevention, treatment and care from a variety of sources, including health workers and mass media. In many cases this information is dominated by inaccurate conceptions and myths based on populist morality , which stoke fear and play a key role in decisions against seeking health care . Participants felt that information regarding HIV was easier to accept and comprehend when it came from peers rather than health providers or professional programme staff. This was informed by the shared experience of a drug-using background and the direct experience of taking ART. Participants described the accessible information provided by peer support workers as essential in equipping them with the knowledge and authority to dispel inaccurate information and fears about accessing HIV services and treatment, thus enabling them to make educated decisions.
“In my community, it's easier to ask questions about HIV and AIDS. Asking the doctor is awkward, but from peers in the community I can get information easily. I tried to come to the government health centre (puskesmas), I asked about the HIV programme, but sometimes they don't understand me." (Male, PWID LHIV, 41, Bandung)
Participants described the language used by peers as accessible and relatable. Several participants emphasized the importance of the shared lived experience between peers and support workers, which reduced the power dynamics often present between professional health workers and peers.
"This is why we need peer support workers. When peer support workers provide information, it is usually more effective than health workers who provide the same information. Information coming through peers is more acceptable to people who inject drugs. It gets through in a more meaningful way because the peer workers have experience with drug use, with taking ARVs." (Male, NGO programme staff, Bandung)
Navigating complex bureaucracy
Peers highlighted the value of peer support in helping them navigate complex bureaucratic procedures associated with accessing ART. PWID LHIVs noted that peer support workers provided practical assistance with accessing HIV testing, care and support, including by helping them to navigate administrative requirements, providing letters of referral, and physically accompanying PWID LHIVs to appointments.
“I was assisted [a peer support worker] when I first accessed ARV. I didn’t understand the process or know what to do. Because there is a peer assistance programme, it makes access easier for us." (Male, PWID LHIV, 45, Bandung)
"I assisted people who inject drugs and live with HIV to access several services that really helped improve their condition. There are people who don't have identify cards, documents. We are ready to help by communicating with service providers and other administrators on the person’s behalf." (Female, Peer support worker, 31, Jakarta)
Increased trust in health services
Participants described past negative experiences when interacting with staff at hospitals and clinics that provide HIV services. PWID LHIV often felt stigmatized based on perceived negative attitudes by care providers in relation to their drug use status, including observed excessive safety precautions taken by medical workers and denial of care. Women and gender-diverse people who use drugs faced added gender-specific challenges to accessing HIV services. One female peer described the limitations of service providers in addressing her reproductive health needs while she was actively using drugs. Another participant explained that LGBTQ+ individuals who use drugs often faced double stigma related both to their sexual identity and their substance use. These experiences created negative expectations about accessing HIV testing and initiating treatment. As a result, some participants postponed initiating ART or returning to the clinic for check-ups, and many lost trust in medical services.
"I empathize with folks who are still active (using drugs). If they access health care, ARVs, they will surely be asked all kinds of questions that give a clear impression that the doctor doesn't believe that they will adhere to medication. " (Female, NGO programme staff, Bandung)
"There are still service providers who, if they see someone who is [HIV] positive, thin, emaciated, they are discriminatory. As soon as we came in, they immediately put on gloves, masks." (Male, Peer support worker, 36, Jakarta)
"Health services for sexual and reproductive health are not working well. The stigma is still there.” (Female, NGO programme staff, Bandung)
Respondents pointed out that peer support workers may reduce the effects of stigma and discrimination from medical staff and help restore clients’ trust in the medical system. PWID LHIVs explained that having positive experiences with healthcare services when they were accompanied by peer support workers encouraged them to stay engaged in care.
"The role of peer support is to motivate us to trust in health services, more or less, yes. Peer support is quite helpful. We don't know where to go otherwise, but if there is a peer support worker, it’s alright. (Male, PWID LHIV, 36, Jakarta)
Confidence and motivation
As a result of receiving peer support, several PWID LHIVs described feeling more motivated and confident accessing care and adhering to medication. The process through which peer support appeared to impact motivation may be through the development of support networks, the promotion of optimism, and provision of practical support with navigating bureaucratic procedures and discriminatory health service providers.
"With peer support I became more confident. Accessing ARV means a lifetime commitment. " (Male, PWID LHIV, 41, Bandung)
"Peer support has a lot of impacts, one of which is that PWID LHIVs are more aware, they begin to take their medication as prescribed and go for their lab tests regularly, which means that they value themselves and want to know about their current health status." (Male, Peer support worker, 42, Bandung)
Peer support workers, whose formal role is primarily intended to support newly-diagnosed individuals to access and remain on ART, in practice assisted peers with a much wider range of ancillary services, including referrals to primary care, psychosocial and counselling support, accessing opioid agonist treatment, health and harm reduction services post-release from prison, accessing social insurance, applying for identification documents, and legal aid services, among many others.
"If the client asks for our help, for example, to help mediate disclosure or a conflict between them and their families, we are ready to help them." (Female, Peer support worker, 31, Jakarta)
"If clients have a legal problem, I help to at least provide information and guide them through the process." (Male, Peer support worker, 36, Jakarta)
One individual described his experience of receiving support from a peer support worker for an ongoing drug-related legal case. The peer worker provided letters of referral and accompanied him through complex bureaucratic hurdles, including securing a medical assessment in order to confirm his eligibility for diversion to drug dependence treatment. The client attributed the peer support worker’s assistance with ultimately avoiding incarceration.
"The peer support worker has a good relationship with service providers, which makes access easier. He always accompanies me not only in relation to ART, but also on how to access methadone, and for personal and legal matters. In terms of legal matters, he helped me avoid prison: he wrote a letter, [helped with] my medical assessment, and sent supporting documents to the police." (Male, PWID LHIV, 36, Jakarta)
Several participants attributed improvements in their health status, as well as better quality of life, to receiving support from peer workers, who, for some individuals, represented their only link to health services:
"They help people who have just found out their HIV status. Apart from that access, they also give them other types of support, like counselling and easy, quick information. They react quick, if you say, ‘please reach out here, someone is sick, they need to be reached.’ If the peer worker does not connect with them and bring them to services, then they remain sick." (Female, PWID LHIV, 45, Bandung)
"The impact is that the [client’s] general health is better than before we assisted them. For example, one person who had stopped taking his medication, and was so sick that he could not walk and was in a wheelchair, is now [back on treatment] able to walk and go about their activities." (Female, Peer support worker, 31, Jakarta)
Challenges and areas for improvement
Punitive drug law enforcement
Indonesia has some of the harshest drug laws in Asia . Punitive drug law enforcement practices, including street-level arrests for personal drug use and possession, create an environment of fear that dissuades people who use drugs from seeking care . One participant noted that the ambiguity of the drug law, which fails to clearly differentiate between those who use drugs and those who engage in drug trafficking, leads to many people who use drugs who require health and social support to instead be incarcerated.
"People who use drugs are still getting arrested […] There is no such thing as users being diverted to rehab. In practice, it is not as straight-forward as national authorities say it is." (Female, Programme staff, Bandung)
Declining quality of care with reduced funding
Due to decreasing funding for HIV prevention and harm reduction, the peer support component of the national HIV response for people who use drugs has been significantly reduced in recent years. As a result, peer support programmes operating in Indonesia at the time of this study were often compelled to combine harm reduction outreach, education, support and case management. Participants felt that the need to fulfil multiple roles had tangible negative effects on the quality of peer support services. External donors, participants explained, often applied unrealistic targets that require peer support workers to assist a minimum number of clients each month. At the same time, diminished funding from a smaller number of donors has led to a reduced number of peer workers handling increasing caseloads. Participants described how these changes led to overwhelmed peer workers who are no longer able to assist clients with all of their needs:
"Now it’s about chasing targets, not about quality. Because we are confronted with these targets, we are forced to abandon the quality. Peer-led counseling that used to take 2-3 hours is now very brief or often does not take place at all." (Male, Peer support worker, 42, Bandung)
“Since most of our funding comes from external donors, they don’t look at service quality any longer. They are only concerned with quantity, they are only concerned with numbers […] Our outreach target is 1,400 PLHIV – it’s too high.” (Male, Peer support worker, 31, Jakarta)
One NGO programme staff reflected on another negative impact of client quotas that do not appear to reflect the reality on the ground. Because harm reduction materials and continuing funding are tied to reaching numerical targets, some peer support workers and service providers feel compelled to double count clients if they cannot meet their monthly quota of PWID PLHIV linked to care.
"Does it seem rational, if for example, one month we get one or two positive PWID, but according to our target we have to get ten? The effect is that we will count past clients and report double the data." (Male, NGO programme staff, Bandung)
One peer support worker described becoming ill due to overworking in an attempt to reach his “quota”:
“I was so focused on chasing the target, I became ill, my eyes were all yellow." (Male, Peer support worker, 36, Jakarta)
A further consequence of decreased funding for peer support interventions was a lack of investment in adequate compensation and professional capacity building for peer support workers. With declining donor funding, investment in harm reduction materials and peer workers’ capacity needs appears to have dwindled. This includes a perceived reduction in the availability of condoms and sterile needle-syringes typically distributed by peer support workers when conducting outreach and assisting peers.
"In the past, from 2006 to 2016, peer workers distributed a full range of harm reduction equipment: there were condoms, there were syringes, information, education, and communication (IEC) materials. But currently peer workers rarely have such materials." (Male, Peer support worker, 42, Bandung)
"In terms of HIV prevention, the supply of needles is now decreasing. In the past, the needles were of the best quality, but now, we get a lot of expired needles, alcohol swabs that are already dry... " (Male, NGO programme staff, Bandung)
Improvements needed to sustain benefits of peer support
Respondents underscored the need to invest in the capacity of peers so that they can effectively support the community of people who use drugs. Suggested improvements included: recruiting additional peer support workers, providing regular capacity building including counselling support, updated HIV/AIDS and ART information, and equipping peers with harm reduction materials including low dead space needles, updated information, education, and communication (IEC) materials, as well as enabling peer distribution of naloxone to prevent overdose deaths.
"The capacity building of the peer support workers must be increased, and they must be more meaningfully involved." (PWID LHIV, Bandung, PW01_YM_BDG_01)
"My hope is to not have targets, but focus on quality. On how we can better support sharing of information, IEC. " (Male, Peer support worker, 42, Bandung)
One peer support worker proposed that the government increase political commitment and investment in HIV prevention and care targeted toward people who use drugs:
"The government should be more supportive, yes, so that us NGOs don’t depend on foreign donor agencies." (Female, Peer support worker, 31, Jakarta)
Participants emphasized the need for donors and programme managers to be more responsive to co-morbidities such as hepatitis C (HCV) and to the overdose crisis amongst PWUD, and adequately equip peer outreach workers as first responders. Specifically, participants perceived a recent increase in overdose deaths. The illegality of community distribution of naloxone, a drug that reverses the effects of opioid overdose, was noted as a significant barrier to an effective overdose response in Indonesia. One peer support worker described the need for peer outreach workers to be trained in overdose prevention, including administering naloxone:
“Many of our peers have overdosed, and for now the outreach and peer support workers are not equipped with the appropriate tools. I mean, the first response that we can provide is not enough, unless we have naloxone which can neutralize the effects of overdose.” (Male, Peer support worker, 42, Bandung)
Participants additionally emphasized the need to enhance peer support workers’ knowledge and capacity to support testing and treatment for HCV, which affects 51.5% of PWID in the country .
"As soon as we began to feel safe with HIV cases among PWID decreasing, it turns out that HCV has been increasing. Our finding is HCV is quite high but there is no action yet.” (Male, NGO programme staff, Bandung)