Understanding barriers and facilitators to uptake and adherence of ART under Option B+ in Lilongwe, Malawi

Why did I stop? Barriers and facilitators to uptake and adherence to ART in option B+ HIV care in Lilongwe, Malawi.

Kim MH, Zhou A, Mazenga A, Ahmed S, Markham C, Zomba G, Simon K, Kazembe PN, Abrams EJ. PLoS One. 2016 Feb 22;11(2):e0149527. doi: 10.1371/journal.pone.0149527. eCollection 2016.

Causes for loss-to-follow-up, including early refusals of and stopping antiretroviral therapy (ART), in Malawi's Option B+ program are poorly understood. This study examines the main barriers and facilitators to uptake and adherence to ART under Option B+. In depth interviews were conducted with HIV-infected women who were pregnant or postpartum in Lilongwe, Malawi (N = 65). Study participants included women who refused ART initiation (N = 10), initiated ART and then stopped (N = 26), and those who initiated ART and remained on treatment (N = 29). The barriers to ART initiation were varied and included concerns about partner support, feeling healthy, and needing time to think. The main reasons for stopping ART included side effects and lack of partner support. A substantial number of women started ART after initially refusing or stopping ART. There were several facilitators for re-starting ART, including encouragement from community health workers, side effects subsiding, decline in health, change in partner, and fear of future sickness. Amongst those who remained on ART, desire to prevent transmission and improve health were the most influential facilitators. Reasons for refusing and stopping ART were varied. ART-related side effects and feeling healthy were common barriers to ART initiation and adherence. Providing consistent pre-ART counseling, early support for patients experiencing side effects, and targeted efforts to bring women who stop treatment back into care may improve long term health outcomes.

Abstract [1]  Full-text [free] access  [2]

Editor’s notes: Option B+ is a policy recommendation of World Health Organisation (WHO) that offers all pregnant and breast-feeding women living with HIV, life-long antiretroviral therapy (ART), regardless of CD4 count or clinical stage. Few studies have examined the challenges faced by pregnant and breast-feeding women, as they navigate the prevention of mother-to-child transmission cascade. The objective of this study was to identify the main barriers and facilitators to uptake and adherence to ART under Option B+ in Lilongwe, Malawi. This was done by conducting qualitative interviews (n=65) with women living with HIV who were pregnant or post-partum and had initiated ART, and women who refused or had stopped treatment.

The most important facilitator for initially starting and remaining on ART was the need to prevent transmission to their infants and to maintain health (prevent illness). Furthermore, ART was viewed as a solution to women’s health issues. This was especially the case when women believed that their health problems were associated with their HIV infection. There were a number of reasons that emerged for refusing ART. For most women the urgency of having to initiate ART under Option B+ was a major challenge. Women felt that they needed time, either to discuss their status with their partner or to accept their own status. In particular, the desire to speak to their partners emerged quite prominently reflecting a fear of disclosure and concern about their partner’s reaction. Another reason was generally feeling healthy before initiating treatment. Women wanted to wait until their health declined before initiating treatment. Religious beliefs did not play a significant role for most women. Only one woman refused because she believed that God, not healthcare providers, would tell her when she needed to start treatment. Side effects were the most commonly reported reason for stopping ART. Half of the 26 (N = 13) respondents who stopped ART did so because they experienced side effects, which included dizziness, nausea or vomiting, nightmares and hallucinations (9%). Women who had side effects also expressed challenges with food security. Side effects made some women question the efficacy of ART. The lack of partner support was another important barrier to ART adherence as women reported fear of disclosing their status to their husbands. Interestingly, although partner support was factored into women’s decision making, in most cases it was not the main consideration. The majority of partners (n=44) accepted their wives’ status, often sending reminders to take ART every night. However, many women did not return to the clinic even though their partners accepted their status (N = 17). One woman, for instance, took the money her husband gave her for transport to the clinic and spent it on other things. Forgetting to take pills or losing pills were other reasons given for lack of adherence. Stigma within the community was acknowledged as an issue, but there were few reports of overt discrimination. Further, even though some women refused or stopped ART, many of them re-started for reasons such as, feeling encouraged by a community health worker (CHW) or someone like a CHW. This was through their monthly home visits to check on women’s use of ART and to provide treatment support such as explaining the side-effects, counselling husbands and encouraging women to re-start. Decline in health, fear of future sickness, as well as reduction in side-effects were mentioned as reasons for re-starting on ART.

Overall, study authors mention that in the context of Option B+, inadequate time in preparing to initiate ART, as well as side effects emerged as more significant barriers as compared to previous studies on barriers and facilitators in non-Option B+ contexts. Economic barriers to care did not emerge as very significant in this study when comparted to other studies; however, a lack of food affects the severity of side effects. This suggests that economic barriers may manifest as an indirect mechanism that affects ART use. A strength of this study is the use of in-depth interviews with a range of women; not just women who stayed on ART, but also women who refused, stopped and re-started in the context of Option B+. Even though there might be overlap between the findings here and other qualitative research, particular barriers become more salient for women initiating ART in the context of Option B+. In prior assessments, women were only initiated on ART after being immunologically compromised, an assessment which often took longer than a month. This gave women time to reflect and accept their condition and communicate with their partner. In the case of Option B+ women felt they needed this time to prepare. The study demonstrates that challenges with uptake and adherence to ART remain. More time and support for women in decision-making, consistent pre-ART counselling, and support with side-effects may contribute to improvements in the long-run. As ART becomes increasingly normalised, some of these barriers may disappear.

Africa [11]
Malawi [12]
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