HIV viral load monitoring is valued in Mozambique, but test result delays can disempower health workers and patients
Qualitative study in Mozambique highlights how structural challenges around viral load monitoring can disempower health workers and people living with HIV.
In a rural setting in Mozambique, viral load monitoring was highly valued by people living with HIV and their healthcare workers, but there remain a lot of misinformation and communication challenges around what the results mean for their health.
In addition to this, limited health system resources delayed people receiving test results, which made virological failure difficult to manage clinically, and was disempowering and frustrating for both patient and health worker.
The findings come from a qualitative study which explored virological failure and viral load monitoring from the perspective of HIV-positive patients on first-line antiretroviral treatment (ART) and healthcare workers. It is the first qualitative study on this topic in a rural African setting.
Between July and August 2017, in-depth interviews (IDIs) and focus group discussions (FGDs) were conducted to explore patient and healthcare worker perceptions in the Changara-Marara districts of Tete province, which provides ART to approximately 4,223 active patients.
In Mozambique, HIV prevalence among adults is high (13.2%) and around half this population are currently on lifelong ART. In Tete, patients can choose between individual facility-based care, with monthly visits to the health facility to get ART refills, or Community ART Groups (CAGs), peer groups with up to six patients on ART. In these groups patients take turns to collect monthly refills for the group at the health facility.
In 2014, routine viral load monitoring was introduced in Tete. This involved the collection of dried blood spots which were then sent by plane to Mozambique’s capital, Maputo.
Results are, in theory, returned by email to the patient’s health facility. Patients with virological failure are provided with Enhanced Adherence Counselling (EAC) in order to identify barriers to adherence and find solutions with their health worker. After six months, a repeat viral load test is conducted. If the patient fails again, they are referred to the National ART Committee for switching to second-line treatment because of possible drug resistance.
Previously collected data has indicated that 40% of patients had a viral load of over 1,000 copies/ml in Mozambique. This is relatively high compared to other low- and middle-income countries which report much higher rates of viral suppression, typically more than 80% of patients over 12 months of treatment.
In total, 91 participants with experience of virological failure and re-suppression were included in the study. 39 interviews were conducted in seven different communities across both districts. Eight FGDs were held, three with health care workers (n = 18) and five with CAG group leaders and an HIV activist (n = 34). A total of 39 patients (15 male and 24 female), including those in individual care and CAGs participated in interviews.
They found that viral load monitoring was very important to the patient, who saw it as a beneficial and a critical marker of their successful treatment. Equally, a notification of virological failure was a traumatic experience for patients, particularly if they felt they were being adherent.
“I take my pills every day, but then it goes up, goes down; I don’t know what’s going on. It hurts my heart, because even though I do what they [health care providers] tell me, my heart hurts.”
Many patients were saddened and shocked and felt that virological failure was akin to death. One nurse commented that her patient thought her life was over, “now it’s going up, thus my life will end soon … I’m saying farewell to you.”
In other cases, virological failure may make the patient think that their treatment is ineffective and demotivate them to continue being adherent. One health worker commented: “It may create a problem, the patient may want to stop his treatment. Some patients even say “if it’s like this, then I prefer to stop.”
Virological failure was also thought to be associated with an unfaithful partner and witchcraft.
The research found that patients did not always fully understand the procedures for viral load testing and did not always feel a sense of ownership over the process: “It is important to do a [test], because as they have machines, they are able to tell if it’s going well like this … But by myself, I don’t know anything.”
While health workers used biomedical terms, patients seemed to think and talk using symbols, such as the virus ‘waking up’. In their discussion, the authors proposed that messages shared during counselling sessions may be not completely understood by patients. Similarly, health workers themselves may be confused as to why a patient is failing treatment, particularly if good adherence is confirmed through home visits. They may suspect drug resistance but are unable to move the patient to different treatment without a confirmed viral load test, which they have to wait every six months for, before further delays in delivery of the test.
Delays in receiving viral load test results frustrated both parties, and health workers felt unable to support a person living with HIV, citing that they felt helpless.
“We could have been in the month of March, and today we are in August and still it did not appear … We then propose second line [treatment]. When the result arrives we have already lost the patient …died …because the viral load result was delayed a lot.”
Additionally, the delay in receipt of tests promoted distrust on the part of the patient about their health worker. “Sometimes we have cases that we lose because viral load tests are delayed and we were waiting for it … We apologize to our patients [for the delay] until we’re tired and sometimes they treat us like liars: 'you always say that the result will arrive soon…' Thus we are compromised …”
The authors of the study stressed that the results could not be generalised to other settings, but they confirm that viral load monitoring is a critical tool for treatment success in this rural setting.
“Counselling strategies should be adapted to the local context, and should include clear messages for different scenarios, including virological failure in patients reporting good adherence. Viral load monitoring should be coupled with a clear plan to start those identified as failing on second-line ART.”