All prison health care staff and ART service providers had tertiary qualifications in health care. The prison health staff had nine or more years’ experience of working within the prison health care system, whereas the ART service providers had over six months’ experience of providing ART services. Prison officers, on the other hand, had two or more years’ experience of managing inmates’ visits to external health care facilities to access HIV care. Prison and health administrators were also experienced officials who had been managing and providing technical and material support for the prison health care system for many years (Table 1).
While prisoners discussed best practices and challenges they experienced during initiating ART from structural, sociocultural and personal perspectives, service provider participants added diverse points of view to prisoners’ perspectives and described the pros and cons of the existing HIV care provision strategy for incarcerated people. Accordingly, we identified four themes as barriers to, and two themes as facilitators of, early ART initiation after analysing the in-depth interview data. Included under each theme are selected quotes that are representative reflections for the majority of participants for which a unique participant identification is provided by acronym and number (Table 1).
Barriers to early ART initiation
Lack of access to HIV testing
The prison systems lacked testing facilities which would support early identification of HIV infected prisoners and linkage to care. New cases were detected only passively through ad hoc campaigns undertaken by external agencies, and when inmates requested testing due to severe sickness, suggesting an advancement of the infection. A prisoner who had tested positive after prison entry reported:
“My weight had been reduced severely but unfortunately I hadn’t realised that. I hadn’t known but something started to appear on my thigh [Showing his thigh], um----something like weight loss, and it had just started making me dizzy when I had walked for a while, and tingling on the endings, then I was told I had the virus after being tested. They called me to the clinic, there is a clinic if you have seen it, and they called me there and gave me a piece of advice and took me to the Hospital.” (P#2).
He elaborated on the importance of prisoner concern in the face of potential signs of the infection in order to access testing, in the absence of encouragement in the prison system:
“I haven’t seen anything like [offering of voluntary HIV testing and counselling] that unless the person himself discloses or wants to have the test. For instance, they didn’t ask me when I entered. I had the test on my own, after being hurt and got an opportunity during the campaign [performed by an external health agency]. I don’t think there is any motivational work being done by the prison health staff.” (P#2).
Another prisoner who had also first tested positive in prison reported the health staff’s refusal to refer him to an external health care facility for testing, requiring him to wait until an external agency came to the prison and performed testing. He had noticed some possible signs of the infection and so wanted to have the diagnosis:
“I noticed a gradual reduction in my body weight after I had received my verdict. I had even asked them [prison health staff] to refer me to the Hospital, but they refused to do so saying, ‘You have no pain to be referred to the Hospital, just be there!’ Fortunately, HIV testing team came to the prison and had the test here.” (P#3).
Service provider participants supported the reports of inmates that there were inconsistencies in VCT services. This meant that inmates often undertook delayed testing at external health care facilities despite exhibiting symptoms suggestive of infection. Alternatively, they could incidentally be diagnosed through ad hoc testing campaigns undertaken by external agencies. A prison officer acting as a treatment facilitator described:
“-------at least when they [prisoners] repeatedly come to our clinic with the same case, we take them straight to the Hospital when their condition remains unimproved. They will give their medical history and get tested at the Hospital, and will be told to start the treatment if they are found to be positive. No one has been dispatched from here to begin treatment there. But once, people from the Region [a health agency from the Regional State] took their blood for HIV testing and sent back the result via the Post Office.” (PO#1).
Health agencies lacked faith in prison health care staff to undertake HIV testing despite the fact that they had been trained, and so denied test kits. Thus, diagnostic services were external to the prison health care system. This represented a missed opportunity for prison health care staff to offer testing services and utilise the trust they had built with inmates through regular contacts, to perform the task. A prison nurse reported the following:
“Test kits had been changed; we had a training on the new kits because you have to have training whenever a new kit is launched, but they [health agents] were not happy to provide us the new kits assuming that we hadn’t had the training. They said, ‘We will do it ourselves.’ The Health Centre should provide us test kits on time rather than trying to carry out the test by their own on three or four monthly basis. I don’t mean they shouldn’t perform testing but it would be better if it was performed by the prison itself because it is with us whom the prisoners make contact with, every day; it is us whom they trust more. It’s better when a person gets served by the professional whom he trusts more. This is what I have to say.” (PN#2).
Another prison nurse regretted that she was not able to undertake entry HIV testing for incoming prisoners due to an insufficiency of test kits, despite the fact that the majority of prisoners were eager to have the test:
“-------It should have been [offering prisoners voluntary HIV testing at entry], but we didn’t do that. By the way, all prisoners are voluntary to have HIV test, I can say. Many of them ask for testing when they come to the OPD (Outpatient Department). They say, ‘Please Sister, I just want to be diagnosed for HIV!’ Many of them come and say, ‘Would you mind if you check my blood!’ Seventy-five percent of them are very willing but I don't have test kits, I am short of test kits. I just tell them, ‘Remind me when kits are available!’” (PN#1).
Prison officials confirmed a poor level of diagnostic services available in prisons and explained the process of testing prisoners for HIV. According to these participants, HIV testing occurred only rarely and usually in conjunction with international events such as on “World’s AIDS Day” or when external agencies carried out testing campaigns. A prison administrator elaborated on what he observed at his prison regarding HIV testing activities:
“Mostly— is it on the 22nd of November? [referring to World’s AIDS Day]; it occurs on the 22nd of November, and when there is a request by the Regional [Prison] Commission for an overall testing (program) including the staff, and umm-----in collaboration with the Zonal Health Department; they support us test kits.” (PA#2).
Another prison administrator described a rare occurrence of HIV diagnosis that was primarily carried out by external agencies:
“Once, the federal agency came to undertake examinations on HIV, TB and Hepatitis, paying a lot of expenses; they paid per diem for inmates and prepared a tea-coffee ceremony to provide a brief lesson and they directly went to testing activity. They had tested and be aware of themselves [their HIV status]. Examinations are being carried out every year.” (PA#1).
ART service providers and health agents also described that HIV diagnoses were made external to the prison health care system. They reported that the majority were conducted through incidental campaigns organised by outside agencies in the general community which gave no guarantee that inmates who were about to be released could access. Prison health care staff played little or no role on this, apart from referring prisoners to outside health care facilities when their health worsened. One ART service provider stated:
“It is not actually the health professionals there [at the prison] who undertake testing and link positive cases rather it is often through campaigns carried out by the City Health Unit, the Hospital or partners.” (AP#1).
Another ART service provider observed prisoners having HIV test through referral to public health care facilities once their health was severely affected (possibly due to the HIV infection):
“----although there has been HIV testing activities carried out at the prison, they [prisoners] often have tested positive when they come here [to the Hospital] for other treatment.” (AP#2).
Health agents felt a responsibility for making sure that every prisoner who volunteered for HIV testing received an opportunity ahead of his/her release. However, they were uncertain how effective they were in relation to the prison health care staff’s performance:
“We do nothing! [regarding pre-release HIV testing]; We don't know when he gets out. We never know; we never know! [Laughs] We have no any plan to test people who get out of prison, to be honest. We can't work being there as a routine work. Umm-----they [prison health care staff] don’t ask us for help regarding educating people who come out of the prison.”(HA#1).
In prison settings where onsite HIV testing rarely occurred, it was found to be only secondary to other health care activities. This impacted on the identification of HIV infected prisoners especially among new arrivals as the prison health care staff often gave a priority to other medical duties. A prison nurse described the situation and she recommended the presence of a separate office equipped with its own trained professionals to provide an effective diagnostic service:
“By the way, they [new prison entrants] often come after 5 pm form police stations; there is a high work load even if you want to perform testing. It requires its own separate office and a professional who would undertake only this work. Many people may arrive at a time, more than a dozen of people! On one hand, it is not suitable to host them as there are people being served here [at the clinic]. I think it would be nice if there was a separate room and HIV trained professional who would perform this job; would be effective in identifying people who enter here every day.” (PN#1).
Inability of health staff to make timely care linkage
Prisoners who were able to be detected as HIV infected, either through testing campaigns or an opt-in diagnosis at a prison clinic, were not always provided their test results at the testing sites. They were often kept waiting for long periods of time. Prisoners described the circumstance that they were referred to a nearby public health care facility to learn about their HIV status, despite having the test in the prison:
“The prison nurse made some part of the examination and told me that they had no kits to undertake a complete diagnosis so that he referred me to the nearby health centre. I had been told there that I was infected with HIV.”(P#8).
Another prisoner who tested positive in a campaign by external agencies said:
“---------Then they [prison health care staff] called me to the clinic as it was a secret, they didn’t tell me anything except offering me an enveloped paper. Then they sent me there [to a Hospital] and they [ART service providers at the Hospital] had counselled me a lot and asked some questions.” (P#3).
ART service providers at external health care facilities described similar situations and found prisoners who were referred through such a system were confused about their test results after they realised that they were HIV infected. They tended to relate the issue with non-motivational factors such as insufficiency of skills influencing the prison health care staff’s intention to make appropriate counselling and referral services, as a result of health agencies’ failure to provide appropriate training and support:
I have experienced something like this: He [a prisoner] was diagnosed there [at prison clinic] and we found him positive here and he said, ‘I was diagnosed there but I have not been told this!’ We just thought that it might be due to a counselling problem by the health staff and we counselled him and let him start the treatment. I know they [prison health care staff] have such problems.
“There is a sector at the Zonal Health Department which works on HIV. So, they should direct them [prison health care staff] how to perform testing, make a referral and linkage and how the system should be. The prison is under the Zonal Health Department not under the Hospital!” (AP#2).
Another ART service provider gave an account of a prison health care staff member’s failure to offer proper post-test counselling adding their pejorative description of inmates’ being infected with HIV:
“Umm—there was a prisoner who had newly been identified as HIV infected; I think there is some problem with the prison health staff; I don’t know whether it is due to a knowledge gap or being frightened; they don’t clearly let them know about their HIV status. Umm—they don’t tell them they have HIV virus rather they say like, ‘Your blood is turbid!’ We found the guy when he came to the Eye Clinic; he’s a prisoner, he has no chance to have the test outside.” (AP#3).
A prison nurse acknowledged the problems associated with not letting inmates know their test results, and the fact that she never declared HIV test results to HIV positive prisoners; rather she referred them to nearby public health care facilities:
“I mean, we don’t even let him [a prisoner] know his test result, although not recommended. We advise him, ‘I have tested you here but better you go to the Health Centre because they have more advanced testing equipment so that you can be more certain about your result!’ Then they test him again and offer him ART.” (PN#2).
ART service providers noticed significant delays even when such referrals were made that were not in accordance with standards of effectiveness and timing adhered to by other non-ART community health care facilities:
“Among individuals who had been tested there [in prison], there are people who came after a month, two months, and even after four months. It is very difficult and requires a strong referral system. We have inter-ward and inter-facility linkage systems; other district health facilities do it in that way and we would have done the counselling here if they had told us the results even if they wouldn’t let the client know his result; if they let us know even using a piece of paper, or just sent it to us through the Post Office. They have this problem.”(AP#2).
Another ART service provider compared care linkage efforts made by the prison health care system and community non-ART sites, identifying a high likelihood of delays among incarcerated people even if the diagnosis was performed by similar health agencies:
“The issue of care linkage is the usual complaint. Prison campaigns have been undertaken and positive cases were identified but if it was in the community, there would have been a high chance of being immediately linked to care. For instance, if a positive case is found in a community campaign, one can easily bring him here, and health professionals can also easily bring them if found here in the Hospital. However, the situation at the prison is really hard.” (AP#1).
A prison nurse also described the presence of considerable delays in care linkage while attempting to assemble patient inmates to send them to external health care facilities en masse:
“If they [prisoners] are found to be positive today, I will call them today. However, the number of people matters when we send them to the Hospital. If not urgent, I will suspend patients who have an appointment today for tomorrow to include them. If so, I'll look at the appointment and say, ‘I'll send you on this day!’ I say, ‘Stay ready!’ it won’t be longer than a maximum of a week.” (PN#1).
Uncooperative prison security system
Prison security’s repudiation of inmates’ claims for external health care facility visits played a role in causing delays in care linkage. It tended to discourage newly identified HIV-infected prisoners from pursuing ART initiation and even to deny that they were infected. One prisoner described how he noticed his friend dissuading himself from ART initiation because of the emotional trauma he experienced as a result of prison security’s procrastination about his health care facility visit:
“One day, they [prison security] gave him [newly identified HIV infected inmate] an appointment and let him be back. He became very offended since then. ‘You didn’t take me out at my appointed time so I don’t want to go again!’ he refused. They had declined to take him to the Health Centre a couple of times due to a cloudy weather. He got frustrated because of this and he was even saying, ‘I don’t have the virus!’ [Laughs].” (P#5).
A health agent also reported a prison officers’ denial of external health care facility visits as a barrier to accessing care among HIV infected prisoners:
“Sometimes these people [HIV infected prisoners] may not come (to an external health care facility) by themselves because they have low access to outside environment. At times the prison officers refuse to bring them to the health facilities.” (HA#2).
Loss of privacy regarding HIV status
Prisoners sometimes refused to be initiated on ART due to concerns about loss of privacy during procedures at external health care facility visits, as well as negative attitudes displayed by prison officers during the process. One prison nurse shared her experience in relation to this while assisting newly identified HIV infected inmates to start ART, proposing onsite ART services as an ideal approach to avoid such difficulties:
“---------This was the main reason why the guy we talked about earlier refused to start the treatment. He had been tested here and the prison officers tried to take him to the Health Centre saying, ‘Get into the car!’ Then he replied, ‘I don’t want to go there!’ It is a very bureaucratic procedure. They should be tested and start their treatment here at the OPD (Outpatient Department). It reduces mistreatment for the prisoners by avoiding perceptions like ‘He is going out to bring that drug!’, ‘He has!’ It might not be cheerful to him when someone says, ‘Just take him to the Health Centre, and he has to bring his HIV medication!’” (PN#2).
Another prison nurse described the occurrence of privacy loss during call-backs of HIV positive inmates to let the inmates know their test results, because of the involvement of a third party (prison officers and other prisoners):
“------If so (referring to being tested positive), we'll call (back) and let them know. But when they are called out alone, they (other inmates) become suspicious. If you say to someone [a police officer], ‘Get a person with this number!’ he himself will be suspicious. There is something like, ‘He was called because he has the virus!’” (PN#1).
On some occasions, HIV positive prisoners were not directly informed about their test results, but prison officers were informed about the results prior to taking them to public health care facilities. On these occasions, prisoners were unaware of why they had been escorted to the external health care facility until informed by the ART service provider. One ART service provider described:
“It was one of the guarding police who told me, ‘He (a prisoner) has tested positive [Whispering]!’: ‘He came here after being diagnosed there (at prison clinic)!’ The man didn’t know, but the guarding police knew. The prisoner says nothing. It's just the person pulling him in and out. That's how I have come across the two individuals.” (AP#2).
Facilitators of early ART initiation
Peer education and support
Participants discussed the importance of peer education and support for having an early diagnosis and status disclosure to access care in the prison environment. Peer support of ILWHA was identified as an essential source of information and a means through which the more experienced ILWHA convince newly diagnosed inmates to start ART. As a prisoner who had been using ART in prison for about four years said:
“We are the ones to help them [HIV infected prisoners who refused to be initiated on ART]. If we seniors advise them like, ‘It is just like this------,’ they will take it easy and start their medication. Otherwise, they fear to ask and may get worst.” (P#5).
Although ILWHA highlighted the significance of sharing their experience of living with HIV and indicated their intention to perform the course of action, it appeared to be challenging for them to participate in peer education activities that were seldom held in the correctional facilities. They encountered an interference by people without HIV experience in the educational programs that was apparently unnoticed by prison officials. A prisoner who tested positive and initiated ART after he entered into a prison discusses:
Yes, it [referring to World's AIDS Day] is celebrated here as well once in a year, but when that occurs, it is mainly city gangsters who engage in the ceremonial activities. They just interfere in every activity, they know how to dance, how to talk, and then they will be paid! They are the ones who dance and teach, no one who lives with HIV has ever come in. There is no one to coordinate us. Even I sometimes get flustered and say to people, “We are the ones affected, we are the ones who use the medication, what do these unaffected people know?" but they [prison officials] still remain unresponsive.
“I am willing personally [to share his life experience with others]. I don't even teach at a ceremony, why not they print my name out in newspapers! I will teach them “Why and how it occurs!” What else would be said? But it was not given to me, it was given to the gangsters. They don’t know the extent that I know about the situation, it is just an intrusion.” (P#3).
Another prisoner who had been on ART for 12 years (five years in prison) recalled ILWHAs’ motivation to teach fellow inmates in such events, describing how it was discouraged by a lack of institutional support:
“We saw it last time (on World’s AIDS Day). We even tried to announce the program on media, but there were no arrangements at all. I don’t know why they quit it now if there was any (previously). I have never come across such things in this institution. These are the things that should have been present here. I can say that the institution lacks a coordinating committee or there is a dysfunctional committee.” (P#6).
A prison nurse who had previously run an HIV mainstreaming office described the cessation of HIV education programs at her institution despite the commitment of ILWHA to educate fellow inmates. She attributed blame for the interruption to a disregard for the program by prison administration and health agencies:
“There had been tea-coffee programs. We used to be provided with two-percent of the total institutional budget for a monthly tea-coffee program; an exciting program! Umm----the Zonal Mainstreaming Officer was also attending the program (I don’t know who is in charge of the Office currently; might have been changed), and provided us with brochures, music CDs, and teaching leaflets. The prisoners (living with HIV) also used to write a poem, and it was really a vibrant ceremony. It has been interrupted now, otherwise it was an exciting activity.” (PN#2).
Prison health care staff did not always feel it was their responsibility to undertake HIV promotion work:
“It's just like you sit in the clinic and do the work you are supposed to do, but there is nothing else you can feel as a responsibility [regarding HIV testing]. We didn’t have love and unity. There was no thought to each other within the team rather fault finding. Then you would go out having done your work to which you are accountable for. That has created the gap.”(PN#1).
Both prison and health administrators blamed supporting agencies and the government for a reduction in allocation of resources related to HIV promotion work. It was assumed that the infection had meaningfully declined in the community, which eventually evoked restriction of funds by donor agencies. Having announced the decline of the infection in the community, the government did not appear to have the capacity to implement the programs on its own, which had previously been operated by donor agencies in the main. However, the infection continued to spread at an epidemic level, particularly among the most at risk populations. A health agent described the active HIV promotion work that previously existed at the Zonal level, and the anticipated risks that health agencies would likely face in attempting to achieve the goal of ending the AIDS epidemic by 2030 if funds by donor agencies remained restricted:
“There is no one to be asked (for funds) like before. Everyone is short of funds. HIV has been assumed to decline but it has not actually, it has been disseminating like a wild fire [Laughs]. A lot had been done at schools, districts and neighbourhood level including prisons. Following these all efforts, the Ethiopian government declared that HIV had been reduced by 70%; (consequently) the budget has declined considerably since then. The Global Fund and supports of USAID have been shifted to other issues leaving the country to deal HIV/AIDS issues on its own. While the national government announced HIV had been reduced, be it for political purpose or not, but it still remains at the epidemic stage. According to the international definition, the prevalence of more than 1% in the general population is considered as an epidemic. But there are cities in our country with a prevalence of more than 5%. Hosanna [the City where his office located] itself has documented over 2%, the land where HIV was assumed to be absent. In this sense, the government and the people got distracted. It has set to do that again but it is not going to be effective by the government’s only capacity. Although the government is saying, ‘HIV will be stopped by 2030’ it's getting harder.” (HA#1).
A prison administrator added:
“Generally, as there has been a decline in HIV related activities, particularly in relation to the recent slogan, ‘Our achievements on decline’; there must be awareness creating work to enhance this through umm----drama, umm------conversations and other means to create knowledge amongst high risk groups such as drivers, soldiers, and others groups like prisoners; both men and women need to know that it [HIV infection] occurs due to lack of precautions to protect oneself.” (PA#2).
In addition to the decline in the emphasis on HIV-related issues at national level, prison administrations and health agencies failed to work collaboratively or demonstrate appropriate understanding that prisoners are among the most at risk populations for HIV transmission:
“Not that much in this regard [participation in the development and implementation of HIV related plans at the Zonal level]; they don’t invite us in what [HIV related plans] they have developed” (PA#2).
The same prison official discussed the apparent gap in HIV promotion activities existing between his institution and health agencies, and his perception that it was partly attributable to the prison administration’s lack of mandate to make direct contact with health agencies. He proposed he was forced by the circumstance from involvement in the implementation of HIV-related programs at Zonal level:
As I said it before, we have no a mandate to directly attract non-governmental organisations (NGOs) to our institution or contact Regional Health Bureau because we are responsible to the Regional Prison Commission. It should be decentralized but still they are the ones who contact NGOs to give us holistic trainings wherever they come from. For instance, you came here after having reported to the Regional Prison Commission! So?
Imprisonment as an opportunity for early ART initiation
Service provider participants discussed the prospects that incarceration could offer for early treatment of HIV infection. A health agent viewed incarceration as an opportunity to identify and initiate ART for HIV infected individuals who otherwise might have been difficult to reach:
“For instance, sometimes you may not find HIV infected people at health facilities but you may find them at prisons. They may refuse to start ART as they might have tested (positive) at private clinics. Thus, prisons provide a good opportunity to capture such cases which would benefit the patient as well as the community at large.” (HA#2).
One prison nurse appreciated the importance of vicarious experiences of the valuable outcomes of ART that a prison environment offered ILWHA. She provided more wait to positive and negative outcomes in fellow ILWHA in changing their behaviour than education provided by health care providers. In her perception, it helped ILWHA understand the health benefits of ART and decide to initiate:
“It is not because we have educated them [prisoners] correctly or advised them, ‘the medication does this in your body, it reduces viral load, it boosts your immunity’, but they learn from the people inside. For example, I've experienced this: many had just been so drained and their body got back to normal after they had started the medication. Many others have learned from this. They believe that ‘Mr ‘X’ was like this so nothing happens to me!’ That's what I noticed of them.” (PN#1).