Aly Beeman, Research Fellow
Editorial Note: In this piece, Rwanda Carolan Emergency Medicine Research Fellow Aly Beeman shares reflections on the findings from her master’s in public health thesis titled, “I Am Going To Make Tricks… Whereby I Am Going Be A New Person Again”: Reimagining The Framework For HIV Care Engagement From A Cascade To A Cycle model. She explores the motivations of people living with HIV to “clinic transfer” and its relationship to care engagement.
As human beings, I believe it’s in our nature to try to make sense of the world around us. In my experience, questions with a simple definition, explanation, or meaning are preferred to the unknown or messiness of an answer. When I was a child, I would ask my father every “how” and “why” question that I could think of. In the beginning, my questions were simple with simple answers. “How do we see?” “Why don’t we live underwater?” But as you grow, life becomes more complex, as do the questions and the answers. “Why is there poverty?” “How do some people get sick while others don’t?” If he could not come up with a simple answer, I remember the feeling that the answer felt unfinished and I hated that ambiguity.
Once I got to school, this idea that questions should have straightforward answers was reiterated. We learned definitions, formulas, and scientific laws. As I progressed through the educational system, graduating high school, college, and even graduate school, I found this to still hold true. Exam questions generally had one correct answer or, as professors would say, one “preferred” answer.
I found HIV research to be no different. For years, people have created definitions and theories to explain and describe human action in relation to HIV and AIDS. I studied the meaning of engagement, disengagement, adherence, defaulting, undetectable, retained in care, and loss to follow-up, among others. These words had clear definitions, meanings, and tended to be binary (yes or no). To people living with HIV (PLWH), these words create snapshots of their life in one particular moment in time. “Did you take your medication today? Yes or No?” “Did you come to your scheduled clinical appointment? Yes or no?” In addition to these words, I also learned about different conceptual frameworks and goals. For instance, the HIV Care Cascade or HIV Care Continuum is designed to be able to measure patient engagement and movements within the health system (1). It depicts the ideal linear step process that patients should progress through, starting from when they test positive, being linked to care, retained in care and then reaching the desired target of viral suppression (2).
To me, as an outsider, these definitions and frameworks made sense. They had straightforward, simple answers that can, in theory, be easily measured. In 2019 I went and conducted my thesis research in Gugulethu, a former African township located 15km from Cape Town, South Africa. Residents who live in Guglethu are predominantly of low socioeconomic status and utilize public health facilities that are often overburden and low resourced. It was here that made me start to re-examine what we mean by enacting these definitions, theories, and goals in the real world and its implications they have on PLWH.
My thesis team and I were interested in understanding and describing a relatively new phenomenon called clinic switching. Clinic switching, or sometimes referred to as clinic transferring, describes when a patient changes and moves clinics. Clinic switching can be initiated in two ways by patients. They can either make it official by asking their original clinic for transfer documentation that included a medical history and the clinic's approval to switch clinics. Or patients switch "silently," meaning they don't tell either clinic that they have changed where they receive care (3). At times, even arriving at the new clinic pretending to be a new patient as if they don't know their HIV status or using a fake name or address to gain access to the clinic. This can be problematic for two reasons. 1) It has created an inflation of "loss to follow up" patients as the old clinic believes that the patient is no longer receiving HIV care (4). In theory, there could be many more PLWH in care then what our data suggest because of clinic switching. 2) Clinic switching can stop the continuation of health services for patients, meaning that before a patient starts attending their new clinic, they could potentially stop taking their medication for a long time, which can potentially cause worse health outcomes. So, my team and I set off to investigate the driving factors of why patients decided to clinic switch, why they might choose to switch silently versus formally, and how they go about switching clinics.
In 2019, I conducted 19 semi-structured interviews with PLWH who have clinic switched at least once since starting treatment. The results of the study had no simple answers but a myriad of complex and contextual ones. I walked away with a broader understanding of what patient engagement and retention in care mean to the people I interviewed. My knowledge of what the perfect ideal patient changed. Historically, our definition and frameworks of patient engagement equated to this straight line, that patients in theory effortlessly and seamlessly move from one step to the next. Instead, many of the participants that I interviewed often relayed their experience with patient engagement as a cycle, using clinic switching as a tool to restart their engagement after they had been out of care for some time.
Life expectancy for PLWH continues to improve, creating a new group of people who have been taking their treatment over ten years (5). They are expected to maintain a lifelong engagement in ART treatment programs, yet many participants expressed the challenge of meeting this expectation. On average, participants in my study have had an HIV positive diagnosis for fourteen years. Each detailed a time in their life when they struggled to maintain their engagement status to HIV care, often making them miss appointments or stop taking their treatment. Many reported competing fundamental priorities that disrupted their care routines such as changes in family responsibilities, receiving or saving income, or family needs. Yet missing appointments or forgetting to take medication is seen as forbidden in most clinics. When participants could make their next appointment, they were often met by healthcare workers that were unwelcoming and labeled the patient as "difficult," "undeserving of treatment, or of healthcare workers time." Occasionally, healthcare workers would even punish patients who would miss appointments by making them wait extra-long, sharing confidential information in public, or taking them out of adherence clubs.
“So when you miss a date, those (healthcare workers) here in our location, they start to swearing you…shouting, swearing at you in front of other people. That make your dignity like this (foot stomps the ground and smooshes the floor) ... That's why I'm not taking my ARVs, because now I had to pull myself out from the system because of the way they (healthcare workers) treat me, I don’t feel like a man, I'm nothing.” (Male)
The health system has historically used blame discourse when describing why PLWH “fail” to adequately adhere to ART (6). Yet, do not explore the potential contextual reasons for poor adherence (6). This stated “failure” to perform your duties as a patient has created a moral framework around engagement. Participants often attached words of shame, embarrassment, and guilt to describe their “poor” engagement. This also fueled the popular misconception that engagement must be an all or nothing approach. That as a patient, you must come to all of your clinical appointments and take all of your medication, or you shouldn’t come to the clinic at all. Eventually, all of my participants left formal health services as they believed they were not worthy of receiving care or could not tolerate the treatment from healthcare workers.
The amount of time that participants were out of formal care varied in length. Eventually, all of the participants were pulled back into care, either from the support of friends, family, or their community. Yet they all did not want to return to their original clinic for fear of being reprehended, yelled at, or shamed. All of them stated that they wanted a fresh start or a “do-over” to their engagement in HIV services, and the way they saw to do this was to maneuver the health system and switch clinics.
“So, I am going to make a plan now and I am going to make tricks… whereby I am going to be a new person again... to restart my treatment.”(female)
This cycle of engagement, disengagement, and then re-engagement was a way for all of these participants to take control of their care. They reported feeling empowered by making the decision to come back to care and having a chance to restart their engagement with a clean slate. The average number of clinic switches performed by the participants in this study was four times. An average of changing four times to feel safe and welcomed at the place where you receive care.
The findings of this study have taught me many things. Yet, my biggest takeaway was hearing participants describe how their engagement and retention in HIV care do not reflect the simplistic definitions and paths that we have set forward as true. Instead, their engagement has been messy, sometimes chaotic, and most definitely mirrors the real lives of people seeking care, challenging, complicated, resilient, and persevering. In a health system that can be punitive at times, these participants had found a way to make the health system work for them. This cyclical process of engagement, disengagement, and re-engagement in HIV care by using clinic switching to navigate the system shows no clear set path to engagement yet, shows the great lengths that patients go to receive the care they deserve.
The purpose of this article is not to disregard traditional definitions and frameworks in their entirety but to add to them and perhaps make them a bit more complicated. I have learned from my research that even though simple answers may be more satisfying, they hardly incorporate the whole picture and are not always best. In some cases, they may limit our ability to help our participants or patients. Just as the study's participants relayed their engagement in terms of a cycle, that does not mean that it's the only valid framework. Instead, we need to expand our original frameworks and definitions of what engagement in care could look like. Working in social science as researchers, practitioners, and policymakers, we must remember to meet the people we work with an open ear, understanding, compassion, and a willingness to go beyond the simple answer.
1. Lurie, Mark N., et al. “Quantifying the HIV Treatment Cascade in a South African Health Sub-District by Gender: Retrospective Cohort Study.” Tropical Medicine and International Health, vol. 25, no. 2, 2020, pp. 186–92, doi:10.1111/tmi.13334.
2. McNairy, Margaret L., and Wafaa M. El-Sadr. “The HIV Care Continuum: No Partial Credit Given.” Aids, vol. 26, no. 14, 2012, pp. 1735–38, doi:10.1097/QAD.0b013e328355d67b.
3. Geng, Elvin H., et al. “Retention in Care and Patient-Reported Reasons for Undocumented Transfer or Stopping Care Among HIV-Infected Patients on Antiretroviral Therapy in Eastern Africa : Application of a Sampling-Based Approach.” Clinical Infectious Diseases MAJOR, vol. 62, no. 7, 2016, pp. 935–944, doi:10.1093/cid/civ1004.
4. Fox, Matthew P., et al. “Estimating Retention in HIV Care Accounting for Patient Transfers: A National Laboratory Cohort Study in South Africa.” PLoS Medicine, vol. 15, no. 6, 2018, pp. 30–43, doi:10.1371/journal.pmed.1002589.
5. Johnson, Leigh F., et al. “Life Expectancies of South African Adults Starting Antiretroviral Treatment: Collaborative Analysis of Cohort Studies.” PLoS Medicine, vol. 10, no. 4, 2013, doi:10.1371/journal.pmed.1001418.
6. Erin Stern., et al. “Conceptions of agency and constraint for HIV-positive patients and healthcare workers to support long-term engagement with antiretroviral therapy care in Khayelitsha, South Africa.” African Journal of AIDS Research, vol.16, no. 2017, pp.19-29, doi: 10.2989/16085906.2017.1285795
Aly Beeman is a recent master’s in public health graduate from Brown University. She conducted her thesis research in Cape Town, South Africa. While there she interned at Médecins Sans Frontières working to create an intervention for HIV healthcare workers to better communicate with patients who have disengaged. She is currently working as the Rwanda Carolan Emergency Medicine Research Fellow living in Kigali, Rwanda.
Division of Social and Behavioural Sciences
School of Public Health and Family Medicine
Level 3 Falmouth Building
University of Cape Town