Patient-provider relationships are strained by poor working conditions and rigid application of one-size-fits-all models of care, according to an in-depth investigation of why people with HIV drop out of HIV treatment services in Zambia, recently published in BMJ Global Health. But patients rate antiretroviral services more highly than traditional healers, who are perceived to have problems of their own.
The study identified both structural challenges (including resourcing, clinic facilities and clinical guidelines) and staffing issues (including attitudes and discretionary work practices) that discouraged people from remaining in HIV services. The failure of health services to keep people living with HIV engaged in life-long treatment and care has serious implications for individual and population-level health.
Chanda Mwamba and colleagues from the Centre for Infectious Disease Research in Zambia sought out patients who were ‘lost to follow up’ to ask them about their personal experience while accessing care. They conducted in-depth interviews with 69 patients from 12 facilities in four provinces. The researchers ensured that they recruited participants from four groups – patients currently engaged in HIV care, disengaged from care, and patients who had transferred to another facility, as well as the next of kin of patients who had died.
In addition, 158 lay and professional healthcare workers took part in 24 focus group discussions. Finally, researchers observed work practices at each health facility for two days each in order to better understand workflows and human interactions.
The following quotes from patients and healthcare workers illustrate ten reasons why people find ongoing engagement with care challenging.
1. Clinics are often too far away from people’s homes, especially for those in rural areas. Clinic visits cost patients time and money. “So we both have that virus. But I was the one who looked after my husband. I collected his medicine too. But I was alone taking care of [him] at home. And it was too much for me because we had different dates. That is how I stopped… I would have no transport. I would have to walk. I couldn’t manage.”
2. The cramped clinic environment does not sufficiently protect patients’ privacy. “When an individual goes to the clinic, there are people... They will come to see what goes on there at the ART clinic so they can come and tell people what is happening. And that is what makes me feels lazy [to go for care].”
3. Chronic understaffing increases waiting times. “I transferred because... my husband said it’s just too congested. We tried to go there the other day. It was congested. There were a lot of people. We waited and we got tired and he said: ‘No! This place is not conducive for us! Maybe, let’s go [elsewhere]’.”
4. Staff frequently open clinics late or close them early, creating bottlenecks. “When it comes to opening the clinic, they are usually late. They can open at 08:00 but for them to start working, they usually delay. You will find that they will start at 09:00 or 10:00 and by then you will be already tired of waiting. So that makes it hard.”
5. Medical records are often lost or mislayed, requiring extra tests and more waiting. “The way they keep the files, the file was lost daily. When I came, each and every time, the file was lost!”
6. Clinic visits to pick up medication are too frequent and are inflexible. “I am a bricklayer. Once or even three times I told them: ‘I am going to work and that I don’t know when I can come back. So that one month [of drugs] you are giving me its better you give me for three months.’ But they refused saying: ‘It’s our programme, so it’s better we give you something for one month.’ So I tend to think that these people have not thought about me.”
7. Patients who have missed appointments are often selected to have even more frequent visits, without addressing the reasons the person finds it difficult to attend. “When a patient has missed an appointment by a number of days, we – it’s not a punishment in the real sense – but, we punish the client when they come back. Instead of giving such a patient drugs that would last for maybe three months, we give them drugs to last two weeks so they can get used to remembering frequently that they have to come to the clinic.”
8. Some healthcare workers are perceived to be inefficient or unprofessional. “Just the way they do things, that is our big complaint! Even when the doctor comes, I will tell the doctor: ‘These people if they cannot manage those jobs, we should help, because we can manage putting the files in order so that whoever comes, we know where the things are!’”
9. Some staff disclose patients’ HIV status or do not sufficiently protect their confidentiality. “It doesn’t happen frequently but I have observed a number of times by myself, maybe even I have done it. But it is another thing that put clients off, because when we start dealing with them, we vow to them that we are going to keep the information confidential.”
10. Some healthcare workers bully or humiliate patients who arrive late or make requests that are perceived to be unreasonable. “When you go [to the clinic] and ask [questions], they would shout at you. But they are not supposed to shout at us. Instead they are supposed to encourage that person... But just to say the truth, one of the reasons why I stopped care is because there they shout at us very much - they are rude!”
The researchers say their findings show the need for more resources, training and mentorship for HIV services and their workers in Zambia. Health service models should be redesigned to encourage healthcare workers to provide patient-centred care and exercise flexibility to meet patients’ varying needs and circumstances.
Alternative treatments
The study also showed that patients see antiretroviral therapy and Ministry of Health services to be more effective and of better quality than treatments from traditional healers. This encouraging news is in contrast to some earlier studies.
People felt that medical diagnostic tests and results provided the basis for more reliable and targeted treatment:
“It is different [with a traditional healer] because that one won’t explain to you what is paining you, or how it will work with the medicine he will give you.”
“These [ARVs] are working. I have not gone to another place for a traditional healer because that medication doesn’t do anything.”
Whereas Ministry of Health services are free, traditional healers took people’s money without delivering promised results.
“Mmmmmm the traditional healer can only finish your money. But at the clinic there’s nothing paid, it’s free of charge.”
Mwamba C, et al. ‘They care rudely!’: resourcing and relational health system factors that influence retention in care for people living with HIV in Zambia. BMJ Global Health 2018;3:e001007. (Full text freely available).