Twenty-three patients and 19 healers participated in our post-intervention interviews. Among our 23 patient participants, 12 were women (52%) with a median age of 35 years (women: 28 years, men 28 years). Healer participants were primarily male (n = 14; 74%) with a median age of 50 years (women: 51 years, men 50 years). All our patient participants were actively engaged in HIV care, although several had gaps in medication pick up during the past year. Healers who participated in our focus group supported a minimum of four participants (range: 4–11) during the past year.
Adherence to the protocol: Did patients receive the support healers were trained to provide?
Education about medication side effects
Healers were trained to provide psychosocial counseling, HIV education, and disclosure support to people living with HIV in efforts to increase adherence to treatment. The most common barrier to ART adherence reported by patients was medication side effects (all but one participant reported this issue). All participants reported experiencing a combination of nausea, vertigo, diarrhea, headaches and extreme hunger. One patient explained,
I was really bad! I was dizzy for one week. Then the dizziness went away and I started having diarrhea. After the diarrhea I had strong headaches. This all happened at the beginning when I started medicating! I was almost not taking it anymore. But my traditional healer came to talk to me about not stopping, that everything I was feeling would go away. And it indeed went away and now I have no reactions. (woman, 38 years)
As trained, healers provided reassurance that the side effects would lessen in time and recommended taking medication with food, however, side effects were made worse due to widespread poverty in the region, where people frequently eat only one meal per day. Healers felt an obligation to provide support for those who did not have enough food to take with their daily medication. One healer noted the conflict patients face: “Really, the difficulty that patients face is in feeding. They say, ‘for me, all the advice you give us, we are fulfilling. But we have no food. When I take it without eating, I can't walk or get out of bed.’” (Traditional Healer, man, 28 years old)
Healers feel a responsibility to help, but they are also living in poverty and have little to offer. They subsequently had to adapt their solutions due to a lack of available resources. One healer highlighted this conflict,
The difficulties are the same: food is the main factor for people, each patient has their own reaction, tiredness, allergies, vomiting, nausea, drowsiness, diarrhea and more. And they stay at home without being able to do any activity and so they end up having nothing to eat. That's when we are sorry, and we end up taking what little we have to help them. (traditional Healer, man, 27 years old)
Those patients who needed a long-term solution to deal with taking medication without food were told by healers to drink two cups of water (with or without sweet potato leaves) with their pills to reduce the side effects. We did not provide these recommendations; they learned these strategies from speaking with other patients and adapted their work accordingly. Seventy-five percent of our patients reported having to employ this strategy because they were too poor to purchase food on a daily basis.
Healers were trained to provide basic counseling to individuals and couples. Largely, healers felt equipped to provide these services to their patients and felt proud when their patients overcame challenges. Ten patients highlighted the emotional support they received from their healer as a key factor in their remaining on treatment. None reported experiencing poor quality counseling. One patient noted that
...this program helps people living with HIV to overcome the trauma that they go through after receiving the HIV test result. And at the beginning of the HIV treatment, when the person gets tested and the result is positive, the person gets desperate thinking that her life is over. But when they have the support [of someone] accompanying them, that person starts to feel better, excited to receive advice and realizes that there is more of a chance to live. (woman, 32 years old)
However, healers reported encountering situations they were not equipped to address. While healers were taught counseling strategies to assist in disclosure, there were many aspects of the process that were outside of their control. One described a situation with her patient,
“…whose husband abandoned her, she went to her mother's house, and the mother also kicked her out, saying she should look for who gave her this disease. She went into despair, not wanting to live, she didn't want to take the medication because she had nothing to eat. I had to feed her every day. I was sorry for her situation.” (healer, woman, 51 years old)
Healers encountered these difficult situations most frequently when a patient’s family was not supportive. Social support systems, including access to food or housing support are essentially non-existent in this region of Mozambique, leaving individuals to manage (or fail) on their own. Most patients interviewed reported disclosing on their own, but eight traditional healers spoke about assisting at least one patient disclose their HIV status to a family member. One healer explained his support,
I had a patient who, after taking the test, and the result was HIV + was scared. He lived with his brother and was full of fear of revealing about his health to his brother. He didn't know what the brother's reaction would be when he learned he was HIV+. He wanted to speak, but he didn't know how he was going to do it. At the same time, fear consumed him inside, because he had to go to the hospital every month, as it should be. What if the brother asked him what he was going to do in the hospital every month? He came to talk to me; we went to the brother's house together and explained everything. Thanks to God we had no problems. (traditional healer, man, 50 years)
All participants noted how difficult it would be to take medication without the support of those closest to them. While the healer could help bridge that divide, family members who did not agree with the HIV diagnosis complicated patient efforts to adhere to medication.
The adoption of directly observed therapy
Healers reported difficulty in supporting patients believed to be deceptive about ART adherence. In their efforts to address this, and in addition to psychosocial support and advice, healers initiated directly observed therapy (DOT) among patients suspected to be non-adherent, despite this not being taught during training. Borne from a combination of frustration with their patients and experience observing DOT use with tuberculosis patients, healers decided that, in many cases, counseling was insufficient. One patient recounted her experience with her healer.
Every time [the healer] comes over, she says that I shouldn't stop taking [my pills], not fail one day and not miss consultations. And there is more! Sometimes she asks me for the bottle to check if I'm taking it, she counts my pills, controls my pick-up day to see if I didn't fail, she does a lot for us. (man, 25 years old)
One healer described how she managed particularly difficult patients.
I had a patient who had difficulty taking it [ART]. When it came time to take it, she took the pill out of the bottle and buried it on the floor inside the house... I started going to her house every day to give her the pills. I'd put it in her mouth, give her water, check her mouth if she'd swallowed it, stayed for a few minutes then I'd leave. I did it for (2) months and I was the one who kept the pills in my house...and thank God she is now very well and thanked me every day when we see each other. She always tells me, "if it weren't for your persistence I would have died already." (traditional healer, woman, 57 years old)
The use of DOT as a strategy when healers perceived their patients to be deceitful requires additional time and effort, but none of the healers expressed irritation with performing this service. Among patients who experienced this level of observation and control, none complained.
Did Health Care Providers Collaborate Well With Traditional Healers?
While traditional healers endeavored to adapt the protocol to assist their patients, the collaboration between healers and health care providers was less successful, often resulting in insurmountable barriers to the advocacy core component of program implementation. Both patients and healers reported experiences with health care providers that were contrary to Ministry of Health guidelines and the healer collaboration protocol. One healer explained
For some time now, there are days that we are well attended. But at the beginning of the program, we were very ashamed with the patients... The patient would take three days to be seen…The patient said, “why do you send me to the hospital with this crappy paper [referral form from the healer], which is useless? Is it possible for me to go three days without being seen?” I wore my [project] t-shirt, said let's go together, we arrived at the hospital, they did the same thing to us. They looked at me as if I was [a] nobody. It was too much, I was upset, the patient too, we almost gave up on this job. We were told that after dealing with our roots, playing drums and then seeing that the patient is not better, then take them to the hospital. Now what is the problem with nurses? This part we didn't understand the health professionals’ reasons. But now it has improved a lot. I won't say that they always treat us well. There is still one or another that treat us well. There is still one or another that looks at us with contempt and leaves us sitting all day. (healer, male 50 years old)
The poor treatment experienced by healers and their patients undermined the hard work healers were undertaking in the community, which led to confusion and frustration. One healer noted, “When we stop to think about it, we see that health professionals are not happy with our presence around them. I think they should be happy because we are saving lives just like them.” (healer, woman 57 years) This conflict between the health system and the healers providing community-based support will need to be addressed to improve the effectiveness of the intervention (Table 1).