Attitudes and beliefs toward biobehavioural research participation: voices and concerns of urban adolescent females receiving outpatient mental health treatment

Abstract

Background Biobehavioural research methodology can be invasive and burdensome for participants—particularly adolescents with mental illnesses. Human biological researchers should consider how methodological impositions may hinder adolescent research participation. However, literature on adolescent’s voices and concerns toward biobehavioural research participation is virtually non-existent. Aim This study was designed to determine adolescents’ perceptions of participation in research involving the collection of biomarkers via blood, saliva and/or urine samples. Subjects and methods Urban adolescent females (aged 12–19) receiving outpatient mental health treatment (n = 37) participated in focus groups with concurrent survey administration to explore attitudes, beliefs and willingness/intentions toward biobehavioural research participation. Results Participants had favourable attitudes toward biobehavioural research and were amenable to provide each specimen type. Mistrust for research emerged, however, and concerns related to privacy and confidentiality were expressed. Conclusion Participant recruitment is a critical component in study design and implementation; this includes knowledge of population-specific recruitment barriers and facilitators. This innovative paper provides a context for the research participants’ decision-making process, strategies to allay fears and concerns and concrete areas to target in research-related interventions. Although the findings are from a specific, US-based sample, the implications warrant replication of the research in other geosocial settings.

Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review

“…Specific suggestions from children and adolescents on improving assent processes included: for researchers to speak directly to children about research participation – not simply through their parents, ensuring written materials are written in a way that is appealing and understandable, and providing written information instead of using e-mails or websites (Brawner, Volpe, Stewart, & Gomes, 2013; Burke et al, 2005; Swartling et al, 2011; Swartling et al, 2014; Unguru et al, 2010). Specific tools that were demonstrated to enhance children’s and adolescents’ comprehension of research included an assent quiz, and a specific lesson on research rights (Bruzzese & Fisher, 2003; Chu, DePrince, & Weinzierl, 2008).…”

“…The presence or absence of trust was perceived by children as a contributing factor to being involved in research, and also shaped their assessments of risk (Brawner et al, 2013; Traube et al, 2013; Woodgate & Edwards, 2010). Findings in the sample of articles suggested that children and adolescents are most willing to participate in research when they feel safe (Brawner et al, 2013; O’Reilly, Karim, Taylor, & Dogra, 2012; Swartling et al, 2011; Traube et al, 2013).…”

“…Findings in the sample of articles suggested that children and adolescents are most willing to participate in research when they feel safe (Brawner et al, 2013; O’Reilly, Karim, Taylor, & Dogra, 2012; Swartling et al, 2011; Traube et al, 2013). Most children and adolescents expected that researchers and their parents would protect them during their research participation (Brawner et al, 2013; Woodgate & Edwards, 2010). Children tended to believe that if a researcher behaved unethically or caused harm, the researcher would suffer consequences professionally and personally (Traube et al, 2013).…”

“…Birnie, Noel, Chambers, von Baeyer, & Fernandez, 2011 To describe the ethical challenges and acceptability of the cold pressor test from the perspective of researchers, children, and parents. Brawner et al, 2013 To determine adolescents' perceptions of participation in research involving the collection of biomarkers via blood, saliva, or urine samples. Bruzzese & Fisher, 2003 To examine the capacity of 4th, 7th, and 10th graders, as well as college students, to understand their rights in research and the extent to which this capacity can be enhanced following exposure to The Research Participants' Bill of Rights.…”

A Web 2.0 and Epidemiology Mash-Up: Using Respondent-Driven Sampling in Combination with Social Network Site Recruitment to Reach Young Transwomen

“…However, there is evidence that webRDS may be advantageous for hidden youth populations for whom research participation may be stigmatizing (38). Racial, gender, and sexual minorities are especially vulnerable to medical mistrust, fear of authority, stigma, mistreatment, and exploitation (39-42). HIV research studies have struggled to sample adolescents due to HIV-related perceived stigma and negative social consequences (38).…”