Participant Characteristics
A total of 26 male patients and 32 female patients participated in the FGD. Among patients, 27 (47%) had either no schooling or primary schooling only, while 31 (53%) had secondary schooling or higher. A total of 57 HWs participated, including 15 nurses, 12 CHWs, 8 health records managers or registration clerks, 5 doctors, 5 pharmacy technicians, 5 laboratory technicians, 4 social workers, and 3 psychologists. Among HWs, 32 (56%) were women, 47 (82%) were aged 35 and above, and 41 (72%) had 5 or more years of professional experience.
Dimensions of Quality in Haitian HIV Program
Of the six dimensions of quality, patients and HWs discussed concerns related to safety, patient-centeredness, accessibility and equity (Table 2). Patients described mixed experiences with respect to these quality dimensions, with some reporting highly supportive care and excellent relationships with specific health care providers, and others describing strong concerns that threatened their engagement. Health care workers expressed a strong commitment to supporting their patients and described ways in which they sought to promote patient engagement in care; however, they also conveyed the constraints of providing ART adherence counseling and supportive services in the context of Haiti’s fragile and resource-limited health care system. The themes below focus on gaps in quality, and provide a picture of the specific nature of these gaps as experienced by both patients and health care providers in the embedded context of healthcare in Haiti.
Safety
Risks to privacy in seeking clinic-based HIV supportive services: Patients repeatedly and passionately spoke about confidentiality concerns. While no patients described blatant privacy breaches, they noted numerous practices that they felt could compromise their privacy, which were problematic in the context of persistent HIV social stigma. For example, one patient described feeling shame in receiving a school fee payment for their child as a social benefit of participating in the HIV program “This fee payment, they write HIV on it… It is humiliating…. I’m not talking about what they give to the family, it’s what they send to the school office…..as soon as I saw [this]…I ripped the envelope in two and gave it back to them… I’d rather that everyone loses out.” (Female patient FGD). Another patient narrated an experience of attending a support group for ART patients at the hospital, where each person expected to receive a cash incentive for attending the support group. The payment was given as a large bill to one participant, and the group of patients had to seek change from a nearby merchant. Their jockeying about how to divide the payment drew attention of passers-by in the street, which the patient described as a humiliating threat to privacy. Another patient described hesitancy to request a doctor’s note to justify missing work, based on a belief that the note would include documentation of his HIV status.
Risks to privacy in community-based HIV services: CHWs noted the importance of carefully managing communication with patients in order to protect privacy: “We make them our friends and then seek to find a coded way to communicate with code words so that even when other people are around, they will not understand what we are communicating about. We seek to learn about their activities, their religious practices, and all this helps us find them more easily in case of need.” (CHW FGD) Nevertheless, several patients indicated that they refused to enroll in community-based ART services, because of the risk that CHWs would intentionally or unintentionally reveal their HIV status to family, friends and neighbors. One patient explained: “As for me, I don’t like when CHWs come to my place, especially when they come often. Neighbors can get the idea that I’m sick….Once I had recently come from the hospital and a CHW came to my place to say the doctor needed to see me even though I had just been there. The worst was that she approached my 11-year old son to ask after me, which made me so mad » (Female patient FGD). FGDs from both patient and provider perspectives pointed to the importance of balancing efforts to bring patient education, psychosocial support, and care services into the community with efforts to ensure patient privacy.
Limited counseling and support on managing ART side effects: HWs described educating patients about side effects as part of the standard practice when conducting “therapeutic education” at the time of ART initiation. They advised patients to expect side effects and to persevere in taking their medicines until their bodies could “get used to” the medicines. Patients experienced a range of ART side effects, including nausea, vomiting, dizziness, headaches, hallucinations, and nightmares. Several described becoming very distressed and frightened by the side effects they experienced, even strongly considering stopping ART due to side effects. While several indicated that HWs helped them understand that the side effects were normal and would diminish with time, noting that this helped them to persist and not abandon using ART, others described turning to advice from peers in order to understand how to cope with side effects. For example, one patient described a fellow patient’s advice to take the ART medications together with sugar water before bed in order to mitigate dizziness and insomnia.
Threats to personal safety of health workers when providing care in the community: CHWs described concerns with personal safety when implementing integrated community and clinic-based services. CHWs explained that their work sometimes entailed threats to their personal safety, and several described navigating out of menacing situations during their community-based work. In an illustrative example, one CHW explained:
« I needed to contact a sick patient (to bring them their medicines) in a zone that I was not very familiar with…Arriving there, I found people… who seemed to want to harm me… I tried to speak to them wisely, but they didn’t hesitate to accuse me of sorcery and to hold me responsible for the young woman’s illness. I was afraid and tried to ask to see the patient’s sister who had accompanied her to the hospital, but she was not home. I decided to leave but the people [in the area of the patient’s home] tried to prevent me from leaving… I was panicking but tried to continue speaking [calmly] with them so they would let me leave… As soon as I climbed on the motorcycle taxi, [the patient’s] father appeared with a machete to harm me. If it wasn’t for the vigilance of the motorcycle taxi driver, who sped away quickly, it could have ended very badly.” (CHW FGD)
Another female CHW described being harassed by the wife of a patient, who suspected she was the patient’s mistress, to the point that the wife physically followed her and contacted a court to pursue damages against the CHW. Several other CHWs described similar stories of being accused and harassed when doing their job in the community, whether delivering medications to patients who enrolled in the community-based ART program, tracing those who were lost to follow up, or checking in on patients between clinical visits. The stories of these challenges underscore the importance of broadening the concept of safety in healthcare to reflect provider safety while delivering services.
Patient-centeredness
Challenges with putting the principle of “acceuil” (respectful welcome) into practice: Both patients and providers strongly emphasized the importance of “acceuil”, or having a welcoming, patient-centered atmosphere in the clinic, noting that its absence could de-motivate patients or even drive them away. As explained by a nurse “We insist on a welcoming atmosphere. It’s important. Having an unwelcome atmosphere can spoil everything. If from the beginning one starts by introducing oneself, getting to know the patient, explaining the services offered, then they will understand.” (Nurse FGD). However, several patients described being treated brusquely, or with anger or blame. One adolescent female patient expressed her feelings of frustration about how HWs communicate with patients: “We need people [HWs] who know how to approach patients, who can receive patients with humor [and] with respect… When [the nurses] give you your paperwork, you can see that they are busy playing with their phones. Yesterday, I was so frustrated I almost cried, but I had no way to speak with them about it because they are older than me… I’m obliged to respect them because they could be my mother or my aunt. (Female Patient FGD) HWs described that time constraints and limited staffing made it difficult to always ensure an atmosphere of “acceuil,” and they acknowledged that some HWs prioritized this more than others.
Counseling grounded in standard advice-giving messages rather than personalized needs: Both HWs and patients framed ART “therapeutic education” as grounded in a standardized set of basic messages, including the importance of taking ART at the same time each day whether food is available or not to avoid opportunistic infections, avoiding high-fat and sugary foods, always using condoms when having sex, and avoiding “white nights” (without sleep) and drugs and alcohol. The theme of patients desiring more personalized education about HIV and ART was part of several focus groups, with patients describing wanting more information on how their medications work, about long-term effectiveness and effects of the medicines, and about managing side effects. One female patient described not knowing when and how her newborn infant should be tested for HIV, then being scolded by a health care worker for not bringing her infant for HIV testing at the appropriate time, which was very distressing. Another patient described wanting information about methods for safely conceiving a child, but being hesitant to discuss this with any health care providers. HWs also described typically encouraging ART patients with children to remain adherent in order to survive for many years and be able to support their children’s growth and education, rather than using an approach of exploring salient sources of motivation for each individual. Patients in one focus group noted that the lack of space within the clinic for confidential conversations with providers made it difficult to raise questions and concerns outside of the hearing of fellow patients.
Uneven trust between patients and providers: While patients and providers both spoke about specific examples of trustful relationships between individual HWs and patients, there was a sense from patients that these relationships were more the exception than the rule. As expressed by one patient: “There was an agent [CHW] when I first started in the program whom I really appreciated… when he called me on the phone and reached my husband, he knew how to speak with him and this really pleased me….But now I no longer need an agent! There are lots of unfavorable testimonials about health agents.” (Female Patient FGD) From their side, HWs described frequent concerns with whether they could trust patient self-reported ART adherence, noting that some patients were suspected to dump or hide pills prior to returning to the clinic for ART refills. As explained by a nurse: “There was a patient who we followed for a year who said he was 100% adherent but in fact he never took his medicines… Bringing us an empty bottle or almost-empty bottle doesn’t mean that the patient takes the medicine.” (Nurse FGD). In the voice of one patient “It’s often said that there are three places where as soon as you show up, you are believed to be ‘wrong’: hospitals, prisons, and with ‘hougans’ [traditional healers].” (Male Patient FGD). The frequently-cited lack of trust between patients and providers directly inhibited patient-centered services.
Accessibility
Long clinic waiting times: Patient FGDs frequently and passionately raised concerns with clinic wait times. “When you come here, you can spend the whole day…so the issue of the queue for services needs to be seriously considered, especially when you come to the hospital early having not eaten anything and when you don’t have anything [any money] in your pockets.” (Male Patient FGD) Another patient noted “They can have you spend the whole day even though you have other things to do…and the worst is that they are not doing anything more serious than joking amongst themselves, sending telephone messages…” (Female Patient FGD). Haiti’s MSPP has encouraged service-delivery innovations, such as “fast track” ART refills, and a standard that HIV clinic visits should not exceed 1.5 hours; however, providers noted challenges when personnel get pulled away from the clinic for meetings, trainings, or errands and challenges with shifting patient expectations away from a pattern of arriving early in the day and queue for visits rather than coming at specific appointment times.
Limited help available for patients with financial need: Financial barriers to engagement in care were a frequent theme in both patient and provider focus groups. They noted patient responsibility to pay for tests, radiography, and some medicines not offered for free through the ART program. They also discussed how reimbursement for transportation was only sometimes offered, and how the amounts offered were insufficient to cover costs for those coming from outlying areas. Some patients looked to providers for individual favor and help. One patient expressed a sense of disappointment and frustration : « Even when you tell the nurses you have nothing to eat with your medicines, they’ll tell you to take the medicines in spite of everything, they’ll never give you even 50 gourdes [about $0.40 USD] to help you.” (Female Patient FGD) However, another patient affirmed that HWs should not be expected to offer material support: “In my opinion, those who we believe should be capable of helping us economically often have a lot of responsibility, so it’s up to us to take care of ourselves and money is not the most important thing. I remember having a fungal infection that almost left me blind…but I knew that I had to take care of myself and use the medicines the doctors gave me.” (Female Patient FGD) In the context of Haiti’s culture of “patronage” where the poor and powerless cultivate connections with powerful people who can look out for them, HWs described the strain and stress of facing patients who sometimes expected or hoped that HWs would offer financial assistance “from their own pockets.”
Equity
Material support offered to some patients but not others: Patients expressed strong concerns about equity of distribution of material support associated with the HIV program. For example, one patient noted: “ There is an issue with discrimination here…for example, if they see you as having a normal, healthy appearance, they will not give you food even though they know that if you are taking medicines you will appear normal and healthy.” (Female Patient FGD) Another patient suggested that high-value resources are unfairly withheld from certain patients: “Poor people can’t get [food supplements] any more. Foods with protein to eat along with the medicine are there, but they don’t want to give them out. They don’t give you any liquid medicines or anything with iron. If the medicine is sold for more than 50 Haitian dollars, they won’t give it out…One day, there was no Vitamin C syrup for me, but when a ‘big person’ comes, they give it to them. When it’s their friends who come, they give it out.” (Female Patient FGD). Patients in multiple FGDs spoke about how different health facilities offered different social benefits associated with HIV services (e.g. food supplements, transportation vouchers, incentives for participating in support groups). That the availability of these benefits was variable over time and unpredictable seemed to breed distrust in the broader system of HIV care, based on lack of transparency. Building further transparency about eligibility criteria for material support or advocating for universal access to a minimum package of material support could help to build patient trust in the fairness of the system.
Distrust in fairness of the health system: In addition to concerns with equity of services at an individual, interpersonal level, patients also expressed concerns with the equity and justice of the system at a broader, more abstract level. In several FGDs, patients suggest power and profit motives in the health system. For example: “I have heard it said that there is a lucrative market around this issue of AIDS and that the researchers are not interested in finding a definitive treatment. This issue of AIDS has been around for too long. I’ve told the doctors to not hide the cure from us if they have one.” (Female Patient FGD) This quote demonstrates the abstract sense that the system is not set up to serve the powerless average person, but is manipulated by the powerful for their gain, and that the only recourse at the individual level is to appeal to an individualized, favored patronage relationship for help.
Needing an advocate to successfully navigate care: Several patients described the need to form a personal alliance with a HW, in order to get that individual’s help them navigate the clinic circuit and get services in a timely way. One HW described going to extra lengths to help patients who they believed were at risk of defaulting: “Some people are very sensitive, as soon as they see people lining up in front of them, they may give up and go home…We can sometimes go to the reception desk and tell them to look out for this or that patient, out of fear that they leave and don’t return.” (Doctors FGD). However, this strategy of individualized advocacy to help navigate the system could be seen poorly by other patients who were not similarly favored. As one patient noted: “Once I came here really early, and there were three men accompanied by a beautiful woman. I was here early, but they let me wait. One was a police officer, and they gave him his medicines. But those who come, who are not police officers, get nothing. You may come at 7 am and still wait until 2 pm without being called.” (Female Patient FGD) Both patients and HWs described cultivating and enabling favored relationships to help specific individuals navigate a system marked by scarcity, but overall this came at the cost of perceived fairness.
Strained working conditions for health workers:HWs noted strong concerns with the fairness of the health system in offering them a supportive work environment. They described that in the recent past they had endured periods of 4-5 months with delayed salary payments, yet faced the expectation that they come to work even when not being paid at regular intervals. At the time of the study, there was a strike of janitorial and support staff in the public health system that resulted in the closure of many primary care services, and crossing the strike line through groups of demonstrators came with some risk of physical injury. These strained working conditions made it challenging for HWs to focus on providing patient-centered care.