Improving HIV/AIDS care through treatment advocacy: going beyond client education to empowerment by facilitating client–provider relationships

Abstract

Treatment advocacy (TA) programs have been implemented by AIDS service organizations (ASOs) and primary care clinics across the USA to help engage clients with HIV into care and support their adherence to antiretroviral therapy (ART). TA aims to empower people with HIV through education and client-centered counseling regarding HIV, ART, and other health issues; advocate on behalf of patients with providers; and make referrals to healthcare services and clinical trials. However, relatively little is known about the impact TA has on clients' healthcare experiences. The present study's objectives included exploring how TA services help clients engage in HIV care, initiate ART, and adhere to HIV medications. We conducted 25 semi-structured qualitative open-ended interviews with clients living with HIV/AIDS recruited from AIDS Project Los Angeles (APLA); four HIV medical providers; and two TA staff at APLA. Of the 25 clients interviewed, 92% were male and 8% were female. The average age was 43 years (SD=9). About 60% were African-American, 20% were White, 12% were other or multiracial, 4% were Latino, and 4% were Asian/Pacific Islander. Five interconnected themes consistently emerged across clients, TAs, and providers. TAs helped clients understand treatments and supported adherence within a holistic context. Further, TAs acted as a bridge to providers and helped clients build self-advocacy skills. Our data show that TA services go beyond traditional areas of education and treatment adherence. TA services within an ASO also provide a safe place to discuss initial HIV diagnoses and other health issues in a more comprehensive manner. TA services complemented medical and other social services by preparing clients with HIV to be better consumers of healthcare services. Future quantitative research examining the effectiveness of TA on improving clients’ engagement in care and adherence is a critical next step.

Keywords:

• HIV care
• treatment advocacy
• adherence
• antiretroviral therapy
• ancillary services

Acknowledgements

This study was supported by the National Institute of Nursing Research (NINR) and the grant is (R21 NR010284, PI: Bogart). The development of this manuscript was also supported by the Centers for Disease Control and Prevention (CDC) grant number (U48/DP000056, PI: Kaplan). The authors wish to acknowledge the study participants, the members of the treatment advocacy community advisory board (CAB), and the many interns and volunteers who helped support this project, including Philicia Castillo, Caleigh Douglass, Chassity Griffin, Matthew Louie, Vaidehi Mahadev, Jessie Tang, and Lynnea Waters. We would also like to thank Jacinta Elijah, Jennifer Patch, and Alexa Rabin for coding and Bryce McDavitt for his thoughtful contributions to the study and review of this paper.