An evaluation of assumptions underlying respondent‐driven sampling and the social contexts of sexual and gender minority youth participating in HIV clinical trials in the United States

Abstract

Introduction: Respondent-driven sampling (RDS) has been an effective sampling strategy for HIV research in many settings, but has had limited success among some youth in the United States. We evaluated a modified RDS approach for sampling Black and Latinx sexual and gender minority youth (BLSGMY) and explored how lived experiences and social contexts of BLSGMY youth may impact traditional RDS assumptions. Methods: RDS was implemented in three US cities, Baltimore, Philadelphia and Washington DC, to engage BLSGMY aged 15 to 24 years in HIV prevention or care intervention trials. RDS was modified to include targeted seed recruitment from venues, Internet and health clinics, and provided options for electronic or paper coupons. Qualitative interviews were conducted among a sub-sample of RDS participants to explore their experiences with RDS. Interviews were coded using RDS assumptions as an analytic framework. Results: Between August 2017 and October 2019, 405 participants were enrolled, 1670 coupons were distributed, with 133 returned, yielding a 0.079 return rate. The maximum recruitment depth was four waves among seeds that propagated. Selfreported median network size was 5 (IQR 2 to 10) and reduced to 3 (IQR 1 to 5) when asked how many peers were seen in the past 30 days. Qualitative interviews (n = 27) revealed that small social networks, peer trust and targeted referral of peers with certain characteristics challenged network, random recruitment, and reciprocity assumptions of RDS. HIV stigma and research hesitancy were barriers to participation and peer referral. Other situational factors, such as phone ownership and access to reliable transportation, reportedly created challenges for referred peers to participate in research. Conclusions: Small social networks and varying relationships with peers among BLSGMY challenge assumptions that underlie traditional RDS. Modified RDS approaches, including those that incorporate social media, may support recruitment for community-based research but may challenge assumptions of reciprocal relationships. Research hesitancy and situational barriers are relevant and must be addressed across any sampling method and study design that includes BLSGMY in the United States.

“My Friends Would Believe My Word”: Appropriateness and Acceptability of Respondent-Driven Sampling in Recruiting Young Tertiary Student Men Who Have Sex with Men for HIV/STI Research in Nairobi, Kenya

“…Our target population of TSMSM is young and socially marginalized. Other studies have shown that, to varying degrees, RDS is an appropriate and acceptable strategy for recruiting university students [ 31 ]; sexual and gender minority youth, including young MSM [ 32 ]; and young adult non-medical users of pharmaceutical opioids [ 33 ] for research. However, other studies have found that RDS may be an inappropriate strategy for recruiting socially marginalized populations, such as urban young MSM [ 34 ] and young illicit drug users [ 35 ], mainly due to members of the target populations having small network sizes and insufficient ties within their networks, resulting in the inability to sustain recruitment.…”

“My friends would believe my word”: appropriateness and acceptability of respondent-driven sampling in recruiting young tertiary student men who have sex with men for HIV/STI research in Nairobi, Kenya

“…Our target population of TSMSM was young and socially marginalized. Other studies have shown that, to varying degrees, RDS is an appropriate and acceptable strategy for recruiting university students (31), sexual and gender minority youth, including young MSM (32), and young adult non-medical users of pharmaceutical opioids(33) into research. However, other studies have found that RDS may be an inappropriate strategy for recruiting socially marginalized populations such as urban young MSM (34) and young illicit drug users (35), mainly due to members of the target populations having small network sizes and insufficient ties within their networks, thus the inability to sustain recruitment.…”

Examining differential success in recruitment using respondent driven sampling (RDS) in a multi-site study of gay, bisexual and other men who have sex with men

“…Where researchers have evaluated RDS methodology among GBM, many have linked sociodemographic characteristics and recruitment productivity [9][10][11]. Wirtz et al (2021) evaluated the use of a modified RDS approach to explore RDS-related challenges when used as a recruitment strategy among young GBM. The authors found that targeted seed recruitment from clinical samples resulted in enrolled participants who reported stable housing, GBM who are living with HIV, and GBM who report PrEP use, while online seeds were more likely to report Latinx ethnicity [12].…”

“…Wirtz et al (2021) evaluated the use of a modified RDS approach to explore RDS-related challenges when used as a recruitment strategy among young GBM. The authors found that targeted seed recruitment from clinical samples resulted in enrolled participants who reported stable housing, GBM who are living with HIV, and GBM who report PrEP use, while online seeds were more likely to report Latinx ethnicity [12]. The authors also utilized qualitative interviews and found small social network sizes, limited targeted recruitment referrals and experiences of marginalization, stigma and isolation were barriers to RDS recruitment among young GBM [12].…”

“…The authors found that targeted seed recruitment from clinical samples resulted in enrolled participants who reported stable housing, GBM who are living with HIV, and GBM who report PrEP use, while online seeds were more likely to report Latinx ethnicity [12]. The authors also utilized qualitative interviews and found small social network sizes, limited targeted recruitment referrals and experiences of marginalization, stigma and isolation were barriers to RDS recruitment among young GBM [12]. These findings build upon previous RDS analyses in Vancouver, which found that participants who reported a larger network size, positive HIV status, Indigenous identity, and sexual activity exclusively with males were more likely to recruit at least one study participant compared to those who did not recruit any [13].…”