The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives

Maaike A.J. Noorman*, John B.F. de Wit, Tamika A. Marcos, Sarah E. Stutterheim, Kai J. Jonas, Chantal den Daas

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

Abstract

As research into the development of an HIV cure gains prominence, assessing the perspectives of stakeholders becomes imperative. It empowers stakeholders to determine priorities and influence research processes. We conducted a systematic review of the empirical literature on stakeholder perspectives. PubMed, Embase, Web of Science, and Scopus were searched for empirical, peer-reviewed articles, published before September 2022. Our analysis of 78 papers showed that stakeholders could be divided into three categories: people with HIV, key populations, and professionals. Following thematic synthesis, two main themes were distinguished: stakeholders’ perspectives on HIV cure research and stakeholders’ perspectives on HIV cure. Research on perspectives on HIV cure research showed that stakeholders’ hypothetical willingness to participate (WTP) in HIV cure research was relatively high, while actual WTP was found to be lower. Studies also identified associated (individual) characteristics of hypothetical WTP, as well as facilitators and barriers to hypothetical participation. Additionally, we reported research on experiences of actual HIV cure research participation. Our analysis of stakeholder perceptions of HIV cure showed that most stakeholders preferred a cure that could eliminate HIV and outlined positive associated impacts. Furthermore, we observed that most included studies were conducted among PWHIV, and in the Global North. To empower stakeholders, we recommend that future research include an even greater diversity of stakeholders and incorporate theories of behavior to further explore how stakeholders decide to meaningfully engage in every stage of HIV cure research.

Original languageEnglish
Pages (from-to)3789-3812
Number of pages24
JournalAIDS and Behavior
Volume27
Issue number11
DOIs
Publication statusPublished - Nov 2023

Keywords

  • HIV cure
  • Meaningful involvement
  • People with HIV
  • Social engagement
  • Stakeholders

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