Impact of Integrated Healthcare on Social Support for Patients with Co-Morbid HIV and Chronic Illness in South Africa
Jewels Rhode is a second year MPH student in the Department of Health Behavior at the Gillings School of Global Public Health at UNC Chapel Hill.
For her practicum last summer, she traveled to Cape Town, South Africa, where she worked with the South African Medical Research Council (MRC) on examining the treatment and disease experiences of people with co-morbid HIV and chronic illness.
There are about 6.4 million people living with HIV in South Africa (Shisana et al., 2014). South Africa has the largest public sector antiretroviral (ART) program in the world, providing HIV treatment to 2.4 million children and adults living with HIV (32% of the population) (Shisana et al., 2014). As a result of their expansive ART program, South Africans are now living longer with HIV; however, the success of this program has introduced a new health concern with the rise of co-morbid HIV and chronic illnesses (Bradshaw, Steyn, Levitt, & Nojilana, 2014).
About 16.5% of South Africans have high blood pressure, 5% has diabetes, 4.2% has high cholesterol, and 2.2% has heart disease (Shisana et al., 2014). People in treatment for HIV are at higher risk of developing chronic illnesses because ART therapy may induce metabolic changes and psychological effects (Calvo & Martinez, 2014). Furthermore, lifestyle risk factors for chronic illnesses such as tobacco use, unhealthy diet, and physical inactivity are highly prevalent in the population of people living with HIV (Bradshaw, Steyn, Levitt, & Nojilana, 2014).
Given the overlap in prevention and management of HIV and chronic illnesses, South Africa has recently moved towards integrating their ART clinics with their general wellness clinics.
Filling in the Gaps
Currently, there is a dearth of literature on the feasibility and logistics of an integrated healthcare system in South Africa, a lack of clarity on guidelines and policies in place to facilitate this, and there is no information on the effect of integration on clinic services.
When I first arrived in Cape Town, MRC had just started its mixed-methods study addressing these research gaps by assessing the readiness of the existing Western Cape healthcare system to serve patients with co-morbidities of HIV and chronic illnesses. The purpose of my practicum was to spearhead the qualitative part of this study exploring the impact of integrated healthcare.
My research questions were:
- What are the differences in perceptions and attitudes of people co-managing HIV and chronic illnesses that attend HIV-treatment centers versus integrated treatment centers?
- What is the role of social support in the co-management of HIV and chronic illness?
Most of my time was spent working with the research team and community stakeholders to develop and implement a focus group guide. Together, we conducted two focus groups with patients living with HIV and chronic illnesses attending integrated and non-integrated clinics, and six semi-structured interviews with staff members in a metropolitan integrated clinic.
The clinic in which I interviewed staff members happened to be very popular. The majority of patients there were employed and travelled long distances to receive services. The hallways were always bustling with patients waiting to see providers or picking up medications.
One of the staff members I interviewed was an ART Adherence Counselor with over 10 years of experience. According to the counselor, HIV peer support groups were difficult to sustain because the majority of patients worked and lived far from the clinic. In lieu of a formal peer support group, the clinic established a “Treatment Supporters” program. The protocol called for patients to have a person accompany them to ART counselling in order to initiate ART. That person would support them throughout the course of treatment. If the patient did not have anyone to bring in as a Treatment Supporter, they were assigned a Community Health Worker who would either visit them in their homes or in a designated location.
Integration and Its Unintended Effects
In theory, integration is supposed to be beneficial for patients with HIV and chronic illnesses because instead of seeing a different provider for each illness, they would receive all their care within the same facility with a single provider. In practice, however, integration can cause a great deal of frustration for both patients and clinic staff.
For instance, patients in integrated clinics were bothered by the drastically increased pharmacy wait times. In one clinic, the patients’ frustration with the new system led to a petition pleading for a return to the previous system, stating that they did not understand the reasoning behind the switch.
Part of the frustration from clinical staff stemmed from the lack of preparation and guidance for implementation. The former ART operational manager noted that the decision to integrate was a top down decision with limited discussion with staff members on how it would impact their job duties.
Prior to integration, the ART clinics had healthcare providers that were specialized in HIV. After integration, general healthcare providers with limited HIV knowledge are now seeing HIV patients. This has resulted in numerous mistakes in diagnosis and treatment.
Furthermore, healthcare integration has had an unintended negative impact on informal peer support systems. The Adherence Counselor noted:
“People don’t feel free talking to each other. Before you can sit in this room [her office] and listen to them talking to each other… Giving tips and things on what to do…. It was an informal support group outside… I’m telling you it was so wonderful… but now that relationship is broken. There is no relationship anymore now amongst the people. Otherwise, it was so wonderul to hear them talking to each other about their problems.”
Before integration, patients living with HIV would come to the clinic on certain days and sit in a particular side of the hallway. They knew each other and shared advice while waiting to see their providers. With integration, that system was dissolved once patients with various health conditions were mixed together in the waiting area.
Stigma is still a big issue and people are very cautious around unfamiliar faces. Participants in my focus groups echoed these concerns and discussed a desire to be a part of a support group geared towards their HIV and chronic illness management, but none currently existed at their clinics.
Although my findings are still formative, my work has shed light on areas that merit consideration for strengthening integrated healthcare systems. Healthcare integration needs to be communicated clearly with staff and patients to reduce confusion and avoid disruption of services. In the case of patients with HIV and chronic illness, new programs are needed to replace peer support systems that were disrupted in the transition. Through our qualitative research, we were able to identify and raise awareness of the high, unmet demand for peer support in this population.
Ultimately, the study aims to reach about 900 HIV patients with chronic illnesses in 30 metropolitan and non-metropolitan clinical sites. I look forward to the findings of the study as it will provide the first comprehensive look at the best practices and impact of integration on managing patients with co-morbidities in South Africa.
Bradshaw, D., Steyn, K., Levitt, N., Nojilana, B. (2014). Non-Communicable Diseases-A race against time. South African Medical Research Council.
Calvo, M., & Martinez, E. (2014). Update on metabolic issues in HIV patients. Current Opinion in HIV & AIDS, 9(4): 332-9.
Shisana, O, Rehle, T, Simbayi L.C., Zuma, K, Jooste, S, Zungu N,… Onoya, D.(2014) South African National HIV Prevalence, Incidence and Behaviour Survey, 2012. Cape Town, HSRC Press.
Shisana O, Labadarios D, Rehle T, Simbayi L, Zuma K, Dhansay A, …the SANHANES-1 Team (2014) South African National Health and Nutrition Examination Survey (SANHANES-1): 2014 Edition. Cape Town: HSRC Press.