“You are not alone”: a qualitative study to explore barriers to ART initiation and implications for a proposed community-based youth treatment club among young adults newly diagnosed with HIV in South Africa

ABSTRACT

In South Africa, despite universal antiretroviral therapy (ART) availability, 60% of persons living with HIV (PLWH) ages 15–24 are not on treatment. This qualitative study aimed to identify barriers to ART initiation and the implications for a proposed community-based Youth Treatment Club to improve ART initiation for young PLWH in limited-resource, high HIV-prevalence communities in Cape Town, South Africa. Recruiting participants at community testing sites from 2018 to 2019, we conducted semi-structured interviews, informed by Social Action Theory (SAT), with 20 young adults, ages 18- to 24-years-old, newly diagnosed with HIV, along with 10 healthcare providers. Through systematic qualitative analysis, we found that young PLWH face barriers to treatment initiation in three SAT domains: (1) stigmatizing social norms (social regulation processes); (2) challenges coping with a new diagnosis (self-regulation processes); and (3) anticipated stigma in the clinic environment (contextual factors). Participants shared that a proposed community-based Youth Treatment Club for newly diagnosed youth would be an acceptable strategy to promote ART initiation. They emphasized that it should include supportive peers, trained facilitator support for counseling and education, and a youth-friendly environment.

KEYWORDS:

• HIV
• South Africa
• adolescents
• coping
• antiretroviral treatment

Acknowledgments

This study would not have been possible with the dedication of the study participants in South Africa. We acknowledge Abbott who has supported the mobile operations since 2015. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

ITK designed and led the study with guidance and oversight from LGB, IVB, CAM and LB. ER, RJ, PK and PV led the acquisition of the data. MFN, YSL, RJ, PK, PV and ER analyzed the data with guidance and oversight from ITK, LGB, LB, and CAM. MFN wrote the first draft of the manuscript. All authors assisted with the writing and revising of the manuscript and provided final approval of the version to be published. All agreed to be accountable for all aspects of the work.

Ethics approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments. The study was approved by the Human Subjects Committees at Partners Healthcare (Protocol number 2018P000961) and the University of Cape Town Human Research Ethics Committee (219/2018).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded by Grant Number R34 MH114897-01A1 from the National Institute for Mental Health (Katz), Grant Number T32 AI007433 from the National Institute of Allergy and Infectious Diseases (Nardell), and Grant Number K24 AI141036 from the National Institute of Allergy and Infectious Diseases (Bassett). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Institutes of Health.