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.