While the term “self-care” might bring up images of bubble baths, meditation, or reading your favorite novel, the term means something a little different when we’re talking about clinical health care. At a session at the International AIDS Society’s AIDS 2020 virtual conference, a group of people from the HIV workforce came together to talk about patient self-care, which the World Health Organization defines as the ability of individuals, families, and communities to promote health, prevent disease, and cope with illness with or without the support of health care providers. When people are given the opportunity to become active agents in their own health, this leads to improved health outcomes, ultimately paving the way towards universal health care.
Because of fewer clinics being open to foot traffic during COVID, more patients have been empowered by health professionals to take part in self-care, which could mean taking their own diagnostic tests, self-managing their care, and a higher level of awareness around their own diagnoses. This means that, in a way that was previously unprecedented, health care professionals have handed over the reins of care to patients and learned what they are capable of doing themselves. Rather than being the sole people to administer care, they can teach others how to administer their own care.
While the COVID pandemic has given HIV service providers many new challenges, the opportunity to increase self-care and empower patients has been a welcome opportunity, according to Davina Canagasabey, M.A., one of the panelists at the AIDS 2020 session, who also spoke to TheBody in an interview.
“It is critically important to really push the dial on differentiating and decentralizing service delivery across the entire HIV prevention-to-treatment cascade,” said Canagasabey, who is a technical advisor on HIV programs with the global health nonprofit PATH. She added that, by not relying on services in one place, like a clinic, providers can reach people “with a full suite of options for them to choose how, when, where, and from whom they want to receive HIV services, whether that be counseling on the best prevention methods to receiving ARV [antiretroviral medication] refills.”
Filippo Zimbile of the organization STI/AIDS Netherlands said that clients are “capable of doing a lot themselves” and if they’re willing to self-test, especially when it comes to something as personal and private as sexual health, they should be able to. Zimbile also pointed out that self-testing has tremendous advantages for the patient, including no travel time and no waiting queues. During lockdown, he said, with clinics having fewer open hours, more clients have been redirected to online risk assessment tools and commercial partners where they can order self-tests.
Zimbile added that there should be more research done as to how doctors can create an infrastructure whereby patients can feel empowered to test themselves. Currently, he said, in the Dutch model, patients can order tests themselves and perform them at home, including not only testing, but also risk assessment. He added that one of the benefits of the majority of people self-testing is that for people who have lower medical literacy, or who are unable to self-test for whatever reason, they will have greater access to health care professionals.
Anderson Langdon, M.S., of Barbados Family Planning Association added that COVID has made health professionals realize that they were not utilizing clients to the level that they could. Of course, that does create a new need: Staff have to be trained on how to train clients to self-test.
Langdon said that Barbados Family Planning switched to online models of care for many of their clients, including a transition to telemedicine.
Canagasabey added that COVID-19 has put unexpected barriers between individuals and HIV care, due to things like lockdown orders, transportation restrictions, and a redirection of resources. With fewer clinical hours and fewer in-person visits, there’s less opportunity for health care workers to offer HIV testing and prevention. Meanwhile, people living with HIV are also getting less support. The response at PATH, Canagasabey said, has been to decentralize services and make sure clients are able to take an active role in their health outside of clinic settings.
Canagasabey said that in some locations, they began to offer self-testing at pharmacies for individuals who were going to pharmacies instead of clinics. Pharmacists can give risk assessments and then refer them to go to a clinic if needed. Pharmacists can also offer linkage to treatment or pre-exposure prophylaxis (PrEP) services.
Canagasabey noted a few different programs offered in different locations globally. In Ukraine, partners of people who inject drugs were given the option of assisted or unassisted self-test kits that could be used at home. In Kenya, PATH created more than 100 virtual safe spaces for young women to access information about PrEP and testing services via WhatsApp. People were able to follow up individually via phone call for risk assessment and home delivery of PrEP, as well as testing kits.
Participants especially liked “[being] able to have information and resources at their fingertips to access at whatever time was most convenient for them” and getting “on-demand responses and feedback to their concerns and questions via the group discussion board or individual chats,” according to Canagasabey.
Khanyiswa Kwatsha of South Africa’s Wits Reproductive Health and HIV Institute said that it was important to create a demand for self-testing among younger people. She used as an example that the standard of care in many countries is for people with breasts to self-examine themselves for warning signs of cancer. In that spirit, she said, we can empower people to take more ownership of their own health.
“If we start with this kind of self-awareness, information, and education, the self-efficacy, it can pave the way for more interventions,” she said. “We can have a generation of people who feel comfortable with the concept of self-management.” She further pointed out that we already trust patients to take pills without a health care provider present, and that we can extend the idea of what patients can do beyond just taking pills.
While COVID has presented myriad challenges to clinics, Canagasabey said that there have been some opportunities brought about by the move to online care and self-care. As part of a “Stay home, self-test” campaign in Vietnam, she said, 28% of people who took an at-home HIV test were first-time testers. People you do not reach in a clinical setting can now be reached.
Langdon also offered that there are certain populations who might be more apt to take up self-testing and self-care. For instance, he said, many sex workers in Barbados felt more comfortable and were more able to be compliant without having to enter a health care setting and felt that they would be better suited with self-testing.
Overall, Canagasabey said, she sees client-focused, decentralized services as one of the critical tools for getting a durable end to the HIV epidemic.
“What COVID-19 has pushed us to do is to really re-think, and think creatively, about how we approach health service delivery and rapidly accelerate use of strategies, pulling on principles of differentiated services and self-care that were known to be efficacious but hadn’t yet been scaled to the full extent possible,” Canagasabey said. Some of those services include self-testing, collecting samples, and dispensing ARVs, PrEP, and telemedicine.
She added that, now that self-care has become a part of HIV services in some areas, the next step is partnering with communities and governments to make sure that these lessons learned translate in a post-COVID world.