Exploring factors associated with ART adherence and ... - PLOS

RESEARCH ARTICLE

Exploring factors associated with ART adherence and retention in care under Option B+ strategy in Malawi: A qualitative study Salem Gugsa1,2*, Katy Potter2, Hannock Tweya1,3, Sam Phiri1,4,5, Odala Sande1, Pascal Sikwese1, Janet Chikonda6, Gabrielle O’Malley2

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1 Lighthouse Trust, Lilongwe, Malawi, 2 International Training and Education Center for Health (I-TECH), University of Washington Department of Global Health, Seattle, Washington, United States of America, 3 The International Union Against Tuberculosis and Lung Disease, Paris, France, 4 University of North Carolina, School of Medicine, Department of Medicine, Chapel Hill, North Carolina, United States of America, 5 University of Malawi, College of Medicine, School of Public Health and Family Medicine, Department of Public Health, Lilongwe, Malawi, 6 Ministry of Health, District Health Office, Lilongwe, Malawi * [email protected]

Abstract OPEN ACCESS Citation: Gugsa S, Potter K, Tweya H, Phiri S, Sande O, Sikwese P, et al. (2017) Exploring factors associated with ART adherence and retention in care under Option B+ strategy in Malawi: A qualitative study. PLoS ONE 12(6): e0179838. https://doi.org/10.1371/journal.pone.0179838 Editor: Jason F Okulicz, San Antonio Military Medical Center, UNITED STATES Received: November 9, 2016 Accepted: June 5, 2017 Published: June 21, 2017 Copyright: © 2017 Gugsa et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability Statement: All relevant data are within the paper. For the purpose of protecting potential personally identifying information, Lighthouse Trust has not made study data available for the public. Individuals interested in accessing data used in this study can request and obtain the full, anonymized transcripts by emailing Lighthouse Trust at exec_assistant@lighthouse. org.mw.

Although several studies have documented challenges related to inadequate adherence to antiretroviral therapy (ART) and high loss to follow-up (LTFU) among Option B+ women, there is limited understanding of why these challenges occur and how to address them. This qualitative study examines women’s experiences with ART adherence and retention in care. Between July and October 2015, in-depth interviews were conducted with 39 pregnant and lactating women who initiated ART at Bwaila Hospital in Lilongwe, Malawi. Study participants included 14 in care and 25 out of care women, according to facility records. Data were analyzed using an inductive, open-coding approach to thematic analysis. Ten of the respondents (7 out of care, 3 in-care) had stopped and re-started treatment before the interview date. One of the most important factors influencing adherence and retention was the strength of women’s support systems. In contrast to women in-care, most out-of-care women lacked emotional and financial support from male partners, received minimal counseling from providers at initiation, lacked designated guardians to assist with medication refills or clinic appointments, and were highly mobile. Mobility led to difficulties in accessing treatment in new settings. The most common reasons women re-started treatment following interruptions were due to providers’ counseling and encouragement and the mother’s desire to be healthy. Improved counseling at initiation, active follow-up counseling, women’s economic empowerment interventions, promotion of peer counseling schemes and meaningful engagement of male partners can help in addressing the identified barriers and promoting sustained retention of Option B+ women.

Funding: This work was supported by the National Institute of Allergy and Infectious Diseases, grant

PLOS ONE | https://doi.org/10.1371/journal.pone.0179838 June 21, 2017

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Qualitative study on ART adherence and retention under Option B+

5U01-AI069924. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing interests: The authors have declared that no competing interests exist.

Introduction In 2011, Malawi introduced the Option B+ strategy for prevention of mother-to-child transmission (PMTCT), becoming the first country to offer lifelong antiretroviral therapy (ART) for all HIV-infected pregnant and lactating women regardless of their CD4 cell count or clinical stage. In the first year of implementation of this strategy, there was a 7-fold increase in ART initiation of pregnant and lactating women [1]. From 2009 to 2016, the proportion of HIVpositive pregnant women receiving ART increased from 21% up to 87% [2–3]. However, recent findings have highlighted the challenges of Option B+ in regards to early loss to follow-up (LTFU). For example, a study that analyzed nationwide, facility-level data in Malawi found a LTFU rate of nearly 24% (95% CI 22.6–25.3%) in the first 6 months in high patient volume facilities, with most losses occurring in the first 3 months [4]. An observational multi-facility cohort study in Malawi had comparable findings of high LTFU (22%) in the first year of implementing Option B+ [5] while a study from one facility in Malawi further clarified that 47% of LTFU women only collected their drugs at the time of initiation but never returned to the same clinic to refill their drugs [6]. Published works from other sub-Saharan African countries also show similar gaps regarding retention in care [7–8]. Some of the factors associated with LTFU under Option B+ included younger age at initiation, [5–6,9] being pregnant (compared to lactating) [6], starting ART on the same day of diagnosis [4,7,9], lack of disclosure [7], missing CD4 cell counts at ART initiation [9], having less than a secondary education [7], and receiving care at high volume facilities [4–5, 9]. In terms of adherence patterns, a multi-facility cohort study in Malawi that defined adequate adherence as 90% determined close to one-third of women enrolled in the Option B + program inadequately adhered to ART during pregnancy and lactation, and that those who initiated under Option B+ were 1.5 times more likely to inadequately adhere when compared to women who were not pregnant and not lactating [10]. The study cited that risk factors for inadequate adherence included starting ART under Option B+, at a younger age, or at a government-managed district hospital or health center (when compared to facilities managed by faith-based institutions) [6,10]. A review of 40 PMTCT studies from sub-Saharan Africa summarized poor HIV/ART/PMTCT knowledge, low maternal education level, psychological challenges following diagnosis, stigma, and fear of disclosure as common barriers to adherence and retention [11]. Degree of partner and community support was another key factor affecting ART uptake for PMTCT, as were facility-related factors, such as weak patient-provider interactions, service accessibility and staff shortages. In the context of Option B+, there is limited published evidence from qualitative studies that explore barriers to retention and adherence from patients’ perspectives. Barriers identified in the few existing published qualitative studies include inadequate counseling [8,12], ARTrelated side effects [13–14], fear of disclosure [15–16], HIV-related stigma [15–16], skepticism about lifelong treatment [12] and poor patient-provider interactions [15–16]. Among these studies, few considered perspectives directly from Option B+ women who had already defaulted from HIV care [13–15]. Yet, women who discontinue their HIV care offer a unique and valuable perspective. This study sought to acquire a deeper understanding of factors affecting women’s treatment-related decision-making during periods of pregnancy and lactation. The insights gained from this study are expected to inform future interventions that aim to increase uptake and retention of pregnant and lactating women initiated on ART, while decreasing the number of new infections in infants born to HIV-infected women.


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Methods Study setting This study was conducted at Bwaila District Hospital in Lilongwe, Malawi. Bwaila District Hospital has the busiest maternity unit in Malawi, with more than 50 pregnant women admitted for labor and delivery each day in 2015. The antenatal clinic (ANC) at Bwaila Family Health Unit (FHU) has been initiating HIV-positive pregnant and lactating women on treatment since September 2011. Similar to other high volume facilities in Malawi, routine ART services delivered to HIV positive women at Bwaila FHU are captured in a real-time touch screen electronic medical records (EMR) system. As part of the routine practice, informed consent for tracing in the event of missed appointments is obtained from patients at their initial clinic registration. Follow-up status of all current patients receiving ART is one of the program quality indicators that is reviewed on a monthly basis. Patients who have missed their appointment by more than 21 days are referred to the in-house patient tracing project called Back-To-Care (B2C), managed by Lighthouse Trust. The B2C staff employ text messages, phone calls and field visits to reach patients, remind them about their missed appointment and arrange for their return to care before they meet the national definition of ‘defaulter’ which indicates missing a scheduled appointment by more than 2 months [17].

Study population and sampling Participants in this qualitative study were pregnant and lactating women initiated on ART at Bwaila FHU, under Option B+ strategy. They included women who were out of care (defined as those who initiated ART, but missed their scheduled appointments by more than 21 days without notifying hospital staff); and also women who had been retained in care. These two categories were used to examine any potential differences in factors affecting women’s treatment-related decision-making. Recruitment of respondents who were out of care was done during routine active tracing conducted by the B2C team through phone calls or home visits. Among women in care, pregnant women who enrolled and remained in Option B+ care for more than 3 months and lactating women who enrolled and remained in Option B+ care for more than 6 months were eligible to be interviewed. Duration of care for pregnant women was shorter due to the short pregnancy period (9 months) compared to the longer lactation period that is customary in Malawi. Respondents were recruited until information redundancy was reached [18]. Recruitment of women in care was done at the end of their routine ART pick-up visit at the ANC of Bwaila Hospital by health care providers (HCP) who were mostly nurses. Women who did not consent for active follow up at their initial clinic visit, and those that refused further communication from the clinic after being contacted by the B2C staff regarding their missed appointment were not interviewed.

Data collection and management Between July and October 2015, 39 in-depth interviews were conducted using semi-structured interviews to understand women’s lived experiences and expressed perspectives with ART initiation, adherence and retention in care at Bwaila FHU. In-care women were recruited by HCPs after their routine ARV refill visits. The interviews were conducted by an independent evaluator in a private room at Bwaila Hospital. Women who were out of care were recruited by the B2C team, and interviewed by an independent evaluator at a location identified by the respondents. These included respondents’ homes, a location in their community, and a private room in Bwaila Hospital.


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All participants were asked about their experiences of HIV testing, counseling, ART initiation, follow-up care and types of support needed to remain in care. Probing questions were used to articulate when and why specific events occurred (while pregnant, at birth, during lactation). Women who were out-of-care at the time of the interview were also asked about their reasons for discontinuing their HIV care, and reasons for re-starting or intent to re-start ART. Interviews were conducted in Chichewa (local language in Malawi) by three qualitative data collectors, audio-recorded, transcribed and translated into English. Data quality was ensured through training of data collectors, piloting and refining of data collection tools and ongoing review of transcripts by a senior researcher during data collection.

Data analysis The analysis intended to understand barriers and facilitators of adherence to ART and retention in care. Two researchers independently reviewed the transcripts several times, identified patterns and developed an initial codebook including clear definitions for each code, and examples of their application. The codebook was then independently applied to a smaller set of transcripts and reviewed by a third researcher. Coding disagreements were resolved through discussions and used to refine the codebook. This process was conducted two more times, first with a different selection of transcripts and then, after finalizing the codebook, with the full set of transcripts. Based on the coded data and guided by the study’s research question, themes were generated, discussed and agreed upon by the research team. Data were analyzed using an inductive, open-coding approach to thematic analysis [19]. Atlas.ti v.7.5.12 (Scientific Software Development GmbH, Berlin, Germany) was used to support coding, analysis and data organization. Descriptive data matrices were also developed to summarize key respondents’ information and facilitate the process of comparison across the various respondent categories. Descriptive statistics were used to summarize respondents’ sociodemographic data.

Ethical considerations All research team members were trained on the importance of maintaining confidentiality and protecting the privacy of respondents. If potential respondents decided not to participate, they were informed that their decision would in no way affect the quality or type of care they would receive at Bwaila Hospital or other health clinics. This was communicated with respondents during the informed consent process, in addition to offering them an English and Chichewa version of the consent information sheet. Prior to commencing interviews, the interviewer briefed each respondent about the study and obtained verbal informed consent to conduct and record interviews. Signed consent was not obtained to avoid records that could link respondents to this study. A yes/no checkbox was used by interviewers to indicate consent of participants. Interviewers did not document names or any other personal identifiers in their notes. A study-specific ethical review and approval was obtained from the National Health Sciences Research Committee in Lilongwe, Malawi.

Results Study population Of the 39 women interviewed, facility records showed that 14 were in care while 25 were out of care from Bwaila FHU at the time of recruitment. The 14 participants who were in care included 6 pregnant and 8 lactating women, while the 25 women who were out of care included 12 pregnant and 13 lactating women. By the time the interviews took place, 2 women


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who were out of care and categorized as pregnant in facility records had given birth and were lactating. The majority of the women (n = 36) initiated ART due to pregnancy. Additional sociodemographic characteristics, such as participants’ marital status, time of HIV diagnosis, reason for ART initiation, time of initiation after of diagnosis, status at time of stopping ART are summarized in Table 1. Two individuals reported not having disclosed their status to anyone, while 4 of the 34 women that had partners indicated not disclosing to their partner.

Awareness of Option B+ and perceived benefits While none of the respondents used or immediately recognized the term “Option B+”, both in-care and out-of-care women were familiar with certain aspects of the strategy. For example, Table 1. Characteristics of interview participants (N = 39). Characteristics

N

%

At Bwaila Family Health Unit (FHU)

31

79

In the Field

8

21