Reflections on Person-Centered Care as Key in HIV Treatment Adherence
June 27th, 2023 | viewpoint
Advances in HIV science have turned a once-deadly diagnosis into a preventable and treatable chronic disease. But despite the existence of effective medications for preventing, slowing, or halting HIV progression, many people acquire HIV or develop advanced HIV disease every day, often due to interruptions in prevention or treatment interventions.
People living with HIV have been advocating for greater consideration of their context and whole personhood in medical settings for 40 years. Person-centered care took center stage at the Adherence Conference 2023 as a vital concept for holistic health programming focused on improving quality of life.
“We are so pleased to see the growing evidence base and discussions on successful interventions that focus on the whole person,” says Jessica Posner, JSI’s senior technical advisor. “Person-centered care provides a framework for health programming to incorporate the various dimensions to whole well-being, including a person’s context and individual expression, preferences, beliefs, and the broader health ecosystem.”
But how does one implement person-centered care when it comes to adherence? Here are three considerations:
Stigma
Stigma is a tremendous barrier to HIV prevention, diagnosis, and treatment. People known to be living with HIV may face social rejection, threats to their housing, job, and food security, and in many places even face criminal charges, pushing many people to hide their status. This stigma keeps people from disclosing their HIV status, seeking treatment, picking up refills, or taking their medications consistently, especially when that stigma is perpetuated by household members and health care providers.
“We see that some of our healthcare providers can have lingering stigma towards key populations such as sex workers or men who have sex with men,” says Edward Adiibokah, a research advisor at JSI for the Ghana Care Continuum Project who presented at the conference. “Not only does this make access to care and treatment unfriendly, or even dangerous for these people, but this stigma can influence healthcare providers’ PrEP prescribing behaviors.” Edward’s abstract concludes with recommendations to challenge stigmatizing policies, sensitize healthcare providers, and decentralize PrEP access.
“Stigma plays an enormous role in barriers to PrEP access, linkage, and retention here in Puerto Rico,” says Alexandra Bonnet, senior consultant at JSI, who participated in a lunchtime session titled “A Conversation with Puerto Rican Community Providers: Root Causes of Low PrEP Uptake on the Island.”
“Among clients, fear of being associated with HIV keeps people from considering care, and this same stigma may be related to false beliefs about HIV transmission and the effectiveness of PrEP use, leading them to believe they are not at risk. For healthcare providers, stigma towards certain subpopulations limits outreach to essential communities, such as people who are living in prisons, those with certain immigration statuses, and people experiencing homelessness.”
Intentional Programming to Close Gaps
“Over and over, we see stagnating viral load suppression among children,” says Baker Sserwambala, the orphans and vulnerable children strategic information and program director of the USAID Integrated Children and Youth Development Activity in Uganda. HIV viral load suppression rate among Ugandan children remains lower than that of adults; there, as in many countries, the HIV response is lagging behind the global targets for children.
“We cannot just apply the same programming we have developed for adults to children. They have unique and silent clinical and socioeconomic barriers that make consistent adherence to treatment challenging. At home they may have insufficient food to take the medications, pill burden or bitter taste, or unreliable or forgetful caregivers who cannot facilitate adherence. At school, they might miss doses for fear of discrimination, or have uninvolved teachers. At the clinic, they may interrupt treatment or have an unoptimized regimen. Effective adherence ultimately requires a holistic, age-sensitive assessment and response to treatment barriers, directly observed treatment for non-suppressed children and family-driven solutions,” says Baker.
During his presentation, Baker shared that root cause analysis and joint action planning to strengthen clinical and community services improved viral suppression rates among children and adolescents living with HIV between October 2021 and June 2022, resulting in more than 900 children and adolescents achieving viral suppression.
Children are not the only ones being left behind. “When developing Puerto Rico’s integrated HIV Surveillance, Prevention, and Care Plan for 2022-2026, stakeholders identified common gaps relating to social determinants of health, such as stigma, geographic differences in the availability of services, non-inclusive or culturally sensitive language, and economic needs such as housing or food insecurity, that came before the initial search for health care services,” says Alexandra.
Without interventions that consider these syndemics, we will fail to adequately serve diverse communities facing economic insecurity.”
Meaningful Engagement
Case studies across this conference emphasized that programs are more effective when they meaningfully engage the communities and people they serve.
For example, Julius Chilongoshi, HIV testing services coordinator for JSI at USAID DISCOVER-Health Project, shared that HIV was disproportionately high among sex workers in Zambia, with a prevalence rate around 48 percent. To intentionally reach this community, the Mwanjuni Health Post, a health facility in Zambia, developed an approach called ‘Safe in the Safe Space’, that engaged the community in its design and implementation. Not only did it offer women services, but queen mothers (community leaders) became mentors for others and partnered with healthcare providers to mobilize services. One queen mother shared that “[queen mothers] feel safe in our own space and can conduct our business without worrying about traveling long hours to access health services.”
Through this intervention, the Mwanjuni Health Post more than quadrupled the number of women linked to preventative treatment who are at risk of acquiring HIV, providing PrEP to over 115,300 people.
“Leveraging meaningful engagement with the queen mother, we are able to build trust that has culminated in positive results within the shortest possible time,” Julius says.
Meaningful engagement at the community level is the way to penetrate social networks in order to provide the much needed integrated health services.”
By Sarah Denison-Johnston
Related Resources
Person-centered care:
Stigma:
- HIV-Related Stigma Fact Sheet
- Interrupting Stigma: A Conceptual Map Depicting Stigma Pathways & Intervening Strategies at the Intersection of HIV and Opioid Use Disorder
Closing the Gap:
Meaningful Engagement:
About the Conference
The Adherence Conference 2023, hosted on June 11-13 by the International Association of Providers of AIDS Care and the Albert Einstein College of Medicine-Montefiore Medical Center in Puerto Rico, convened researchers, community organizers, medical practitioners, and program implementers from around the world. JSI experts were honored to attend and present interventions and research on HIV prevention and treatment adherence across demographics and geographies.
Overview of JSI and World Education Presentations at Adherence 2023:
- Treatment Continuity: The Cornerstone of HIV Epidemic Control in Resource Constrained Settings – Yussif Ahmed Abdul Rahman
- Beyond the Clinic: Improving adherence and viral load suppression for children and adolescents living with HIV (C/ALHIV) in Uganda through home-based Root Cause Analysis and Joint Action Planning – Baker Sserwambala
- Community solutions for promoting treatment continuity and re-engaging children and adolescents living with HIV (C/ALHIV) in HIV treatment and care – Emmanuel Tibenderana
- Early Childhood Stimulation Intervention for HIV Positive Mothers Reduces Mother to Child Transmission Rates at 6 weeks, 12 months and 24 months – Deliwe Msiska
- Safe in the Safe Space: Harnessing the reach of Female Sex Workers (FSW) through social networks for integrated Prevention and Treatment Services: The case of Mwanjuni Health Post – Julius Chilongoshi
Poster Abstracts: View abstracts in the Abstract Book
