Exploring Stigma and Self-Image: Mixed-Methods Insights from HIV Cure-Related Research Participants Undergoing
Steven Meanley1, Lidia Rodriguez Garcia2, Nadra E Lisha2
1Department of Family and Community Health, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania, USA.
AIDS Patient Care and Stds
|February 20, 2025
Summary
Participating in HIV cure research involving analytical treatment interruptions (ATIs) can impact self-image. While many experienced a decline, some found purpose and pride in contributing to HIV research, highlighting the need for psychosocial support.
Area of Science:
- Psychosocial Research
- HIV Cure Research
- Self-Image Studies
Background:
- Self-image is a critical psychosocial aspect for individuals living with HIV.
- Analytical Treatment Interruptions (ATIs) in HIV cure research present unique challenges to participants' well-being.
- Understanding the impact of ATI studies on self-perception is crucial for participant support.
Purpose of the Study:
- To explore the evolving self-image of people with HIV during an HIV cure-related study involving ATIs.
- To identify key factors influencing self-image, including internalized stigma, emotional strengths, and psychosocial experiences.
- To describe the quantitative and qualitative dimensions of self-image changes throughout ATI study participation.
Main Methods:
- Mixed-methods approach combining quantitative surveys and qualitative interviews.
- Data collected from the SCOPE-ATI substudy (NCT00187512) of the SCOPE cohort (NCT04359186).
- Quantitative data assessed at pre-ATI, post-ATI, and end-of-study; qualitative interviews conducted at multiple timepoints.
Main Results:
- A general decline in self-image scores was observed over the course of the study.
- Participants reported a moderately high agreement with contributing to reducing HIV stigma through study involvement.
- Qualitative themes revealed struggles with internalized HIV stigma and finding life purpose, alongside pride in scientific contribution.
Conclusions:
- Participation in HIV cure research with ATIs involves complex emotional experiences impacting self-image.
- While some participants experienced diminished self-image, others derived meaning and empowerment from their altruistic contributions.
- Psychosocial support and reinforcement of participants' scientific contributions are essential for enhancing their research experience.
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