Education as an Individual and Social Support Strategy for Managing HIV Care Adherence in Malawi

• In Event: Roundtable Session (Wednesday I)
  In Refereed Round-Table Session: Inequities within and between schooling contexts

Proposal

Introduction
In 2016, Malawi joined countries throughout sub-Saharan Africa (SSA) to provide antiretroviral therapy (ART) to all people living with HIV regardless of their immune function, a program known as ‘Test and Treat’. This expansion in HIV care holds promise for curbing the HIV epidemic, but its success depends on effective adherence to medication and HIV clinic appointments, while managing daily life. In SSA, where the management of chronic conditions is uncommon, on-going adherence to HIV care requires new skills and strategies that interact with familial roles and social support systems (Binagwaho, 2009; Mattes, 2011; Nguyen, 2005; Ware, 2009).

The limited, existing evidence on the quantitative relationship between educational attainment and HIV care in SSA is inconsistent (Heestermans, 2016). This suggests a multifaceted relationship, warranting further exploration in the region. As with other health outcomes, an individual’s educational attainment could positively influence their HIV care through greater literacy and numeracy skills and decision-making capacity (Jukes, 2008; Kickbusch, 2001; Waldrop-Valverde, 2010; Cutler, 2010; Smith-Greenaway, 2013). However, poor quality education may hinder the potential for schooling to translate into improved adherence to HIV care (Heyneman, 2004; Oketch, 2006; Grant, 2015; UNESCO, 2015).

While poor educational skills could create barriers to HIV care and treatment for an individual, shared educational skills within a social support system may help overcome such barriers (Benefo, 2006; Smith-Greenaway, 2017). Few studies focus on how specific skills and strategies are shared informally among family and friends to help HIV clients with the daily management of their HIV care.
Using in-depth interviews with HIV clients in Malawi, I explore how individuals access and use education skills, independently and through social support systems, to remember HIV care appointment dates and track their HIV medication adherence. A better understanding of how education fits within the process of HIV care management may illuminate educational mechanisms that can be harnessed to improve HIV outcomes and explain existing empirical inconsistencies.

Methodology
This qualitative research was nested within a larger mixed-methods study led by Partners in Hope to assess patterns of HIV care and their correlates among new ART clients in Malawi. In-depth client interviews were conducted at eight government HIV clinics in the central and southern regions during the summer and fall of 2017.
Our sampling frame was based on the need for respondent availability at HIV clinics, and an understanding that there can be serious consequences to a client’s inconsistent engagement with the health care system - missing an HIV care appointment likely means that a client will run out of their ART medication. Eligible clients had initiated ART for the first time after the start of the Test and Treat program in July of 2016, had been at least two weeks late for an HIV care appointment in the past year, but had since returned to the clinic to receive HIV care. All clients were recruited from the waiting area at the HIV clinic. Our total sample included 45 individuals, 22 men and 23 women.
I used two methodological frameworks to guide the data collection –a narrative history of the respondent’s missed appointment(s), and the meaning and rationales that respondents gave about their lived experiences of HIV care. Interviews were simultaneously transcribed and translated from Chichewa to English. Using a thematic analysis process, I began with a-priori codes and iteratively developed additional, emerging codes.
Preliminary Findings
Direct and indirect statements about the importance of education for HIV care consistently and organically emerged in these interviews. Respondents referenced the increased ability to manage and retain health information among the more highly educated. In contrast, some suggested that education does not change a person’s ability to access medication and understand the importance of adherence. Others thought that more education could be a barrier to following clinical guidance, as demonstrated by this response: “Even someone who has never been in school can be taking the ARVs as per instructions…school makes you to act as if you know everything…”
Literacy often emerged as a key skill for remembering HIV appointments, while over half of respondents cited low literacy as a key barrier to managing HIV care. Those who could read relied on written documentation and calendars to remember their appointments. Respondents who were not literate describe routinely requesting assistance from family members, friends, or community members to read the ART appointment date, as written by their health care provider. For example, some respondents relied on their children’s literacy skills: “...for people like us who don't know how to read… we ask a child to read the dates for us…”
Numeracy skills emerged as a key strategy for managing HIV care, independent of literacy. Clients describe remembering to return to the clinic based on the number of pills left in their ART bottle, keeping close track of how many pills they were given in relation to the number days before their next appointment date, and counting how many pill bottles they were given in relation to the number of months between appointment dates. Other clients described counting days in their head, using chalk on a wall to mark the days, or counting off days on a calendar and cross-checking those with the number of remaining pills: “…[you] should see the date and then count the pills.” There was notable heterogeneity in the way numeracy was used and the accuracy of pill counting for successfully remembering the appointment date. Respondents who could not read or who did not have access to a calendar, relied on community members to help them keep track of the current date: “when you go to church they announce the date for that particular day…so you count from that Sunday up to the day that you have an appointment...”
Regardless of their level of educational attainment, nearly all interviewees demonstrated a strong dedication to their HIV care and a belief that adhering to ARV medication was critical to their health and longevity. Individual education skills are connected to other educational and informational resources in the social environment, a combination that facilitates sustained HIV care.

Author

• Stephanie Chamberlin, University of Colorado Denver