Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland.

Nicola Boydell,Gillian May Fergie,Shona Hilton,Lisa Margaret Mcdaid

doi:10.1371/journal.pone.0135001

Nicola Boydell, Gillian May Fergie + Show 2 more

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https://doi.org/10.1371/journal.pone.0135001

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Abstract

An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men’s accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to ‘community’ efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial.

Highlights

The response of communities of gay men to the emergence of the HIV epidemic have been linked to successful HIV prevention efforts, and the concept of ‘gay community’ has long been considered important in HIV research and sexual health promotion [1,2,3]
The desire to contribute to ‘the greater good’ was an overarching motivation for participating in the GMSH Survey; for the most part participation was not framed in terms of individual benefit, rather, as a way of helping others
A number of men suggested that participation in the GMSH Survey was a responsible action, contributing to wider social and public ‘good ‘: “I just think it’s the responsible thing to do, you know, in terms of collating information” (Derek, declined to give age, survey and sample)

Summary

Introduction

The response of communities of gay men to the emergence of the HIV epidemic have been linked to successful HIV prevention efforts, and the concept of ‘gay community’ has long been considered important in HIV research and sexual health promotion [1,2,3]. In the context of HIV behavioural surveillance, community-based organisations, venues on the commercial gay scene, and other spaces frequented and used by gay and bisexual men have played a critical role in accessing ‘community’ samples of men from the wider population [4]. Such organisations and venues have played an important role in HIV education and prevention.

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