A qualitative study of women in Malawi who chose not to take HIV treatment as part of the country’s Option B+ programme, or who interrupted their treatment, has found that needing more time to think, concerns about partner support, and side-effects were important reasons for declining to take HIV treatment. While these themes have appeared in other studies of non-adherence to HIV treatment in other settings, they seem to be especially significant in the context of Option B+. In this programme, pregnant women who may feel healthy are asked to begin HIV treatment on the day of their diagnosis and to continue it for the rest of their life.
This is one of the first qualitative studies of the barriers and facilitators to retention in Option B+ programmes. Findings are published in PLOS One and also in Social Science & Medicine.
Option B+ takes its name from two options for antiretroviral treatment during pregnancy and breastfeeding set out in World Health Organization guidelines in 2011. Option B recommended treatment for life for all pregnant women with CD4 cell counts below 350 cells/mm3, but required CD4 cell counts in order to determine whether women needed lifelong treatment. For countries with limited capacity to carry out CD4 testing, treatment for all pregnant women regardless of CD4 cell count is a more practical approach, and Malawi introduced Option B+ in 2011.
The Malawi Option B+ programme offers antiretroviral therapy (ART) to all pregnant women with HIV, regardless of CD4 cell count or disease stage, with the intention that therapy will be continued after the pregnancy ends. It was designed to be a simple approach to implement in the context of extremely limited resources. Option B+ has helped Malawi achieve a dramatic scale-up of HIV treatment in women, but retention remains a challenge – two years after beginning treatment, only 68% of women are still in care.
In-depth, qualitative interviews were conducted in 2014 with 65 women who were offered HIV treatment by the Option B+ programme. Ten had refused to begin ART, 26 had started ART and then stopped during their pregnancy, and 29 had begun ART and remained on it. As the researchers were interested in barriers to engaging in care, women who had refused or stopped ART were oversampled.
Two-thirds were newly diagnosed, while one-third had been previously diagnosed with HIV but had not been eligible for treatment. In this mostly urban sample, most women were in their twenties or thirties. Two-thirds had completed less than secondary school education and three-quarters were married or cohabiting.
For women who began ART promptly and stayed on it, the desire to prevent transmission and improve health were the most important facilitators:
“I knew taking them [ARVs] each day was something else, but I really wanted to give birth to a normal without a disease child and that was so precious a thing to me.”
“[ART] is good since previously I used to have coughs and cold flu regularly, but all these things stopped; and even feeling general body pains, they no longer happen.”
For the ten women who did not begin HIV treatment when it was initially offered, the immediacy of beginning treatment could be a challenge. Several women expressed the need for more time, either to come to terms with their diagnosis or to discuss the issue with their partner and family.
Prior to Option B+, people only began HIV treatment when they were clinically unwell or were immunosuppressed. Clinical assessments could take several weeks and this delay could give people the opportunity to come to terms with their health status. However, in Option B+ clinicians recommend treatment immediately after diagnosis.
It could be difficult to imagine a lifetime of HIV treatment:
"I was like, 'I am only nineteen years, never born a child, and I am starting the ARVs at nineteen years.’ I was thinking if I reach thirty years and am still taking medicines, am I going to be fine?... I could cry each time I was about to take the drugs. Yeah, actually crying, my brother. I was like, ‘Should I live a life of medicines?'”
Another woman said that she was distressed on the day of her diagnosis and so was not ready to start treatment. She also felt the need to discuss the situation with her family, who in fact encouraged her to return and begin treatment:
“I was distressed on that day only that’s why I have come here today... Now my heart is relieved since my relatives have counselled me to come and accept to stay in care.”
While some of these accounts suggest supportive personal relationships, in others women were afraid of a partner’s reaction:
“I couldn’t accept them [ARVs] for the reason of my partner…The child’s father, I can say we could have problems…I was scared that he would be mad and also our marriage could be jeopardised.”
Whereas women who had previously experienced illness found it easier to begin and remain on ART, many women were diagnosed with HIV before they had experienced any symptoms. Some women said that they didn’t want to begin treatment until their health declined.
Moreover, for those women who did begin treatment, not having previously experienced any symptoms due to HIV could make the experience of treatment side-effects especially challenging. Among women who started then stopped ART, the most commonly given reason was drug side-effects.
All women who began treatment took a fixed dose tablet containing efavirenz – a drug that can cause drowsiness, dizziness and vivid dreams. However women may have been attributing some problems associated with pregnancy (e.g. morning sickness) to their HIV treatment.
"So when I met the doctors, they gave those drugs; we take one pill per day. So I felt dizzy after taking the pill. I was even failing to walk, and I was crawling. Then I decided not to take the drugs for three days, and then I was feeling better.”
In these cases, the effect of HIV treatment did not match women's expectation that medicine would treat illnesses and make them feel better. When compared to health before and after taking treatment, they saw a marked decline, often feeling sicker and weaker.
Several described difficulties carrying out their day-to-day work in markets or farms, and the threat to their precarious livelihoods that this posed. Additionally, not having enough money for food was a barrier to adherence as the drugs were perceived to cause more side-effects on an empty stomach.
"Sometimes you find yourself without food, so [going] until up to evening without food, then take them again and with pregnancy, things were not ok for me. I could feel dizzy, vomit at times. When I finished the two bottles I was given, I stopped taking them.”
The other principle reason for stopping ART was a lack of partner support. One woman hid ART from her husband at her mother’s house and stopped treatment when her mother moved house. Some women faced obstructive behaviour from their husbands, such as throwing away the pills or stopping them from attending the clinic.
On the other hand, two women had divorced their husbands, and one was considering divorcing hers, because of these reactions.
Despite refusing or stopping ART, many women ultimately decided to re-start HIV treatment. Reasons included encouragement from a community health worker, a change of partner, and a decline in health.
“While there is some overlap between our findings and that of research on ART adherence in the general adult population, we argue that particular barriers become more salient for women initiating ART in the context of B+,” the authors say. Side-effects and not having enough time to prepare were especially important barriers.
Their findings suggest that Option B+ programmes need to provide high-quality support. Especially if efavirenz is prescribed, women need better information on the side effects they may experience and how to manage them.
“Adequate time and support for women to make the decision to begin treatment, consistent pre-ART counseling, early support for patients experiencing side effects, and timely efforts to bring women who stop treatment back into care may improve long term treatment outcomes,” the authors say.
Kim MH et al. Why Did I Stop? Barriers and Facilitators to Uptake and Adherence to ART in Option B+ HIV Care in Lilongwe, Malawi. PLoS ONE 11(2): e0149527, 2016. (Full text freely available).
Zhou A. The uncertainty of treatment: Women’s use of HIV treatment as prevention in Malawi. Social Science & Medicine 158: 52-60, 2016.