Collecting genetic samples and linked mental health data from adolescents in schools: protocol coproduction and a mixed-methods pilot of feasibility and acceptability

Abstract

ObjectivesTo coproduce a school-based protocol and examine acceptability and feasibility of collecting saliva samples for genetic studies from secondary/high school students for the purpose of mental health research.DesignProtocol coproduction and mixed-methods feasibility pilot.SettingSecondary schools in Wales, UK.ParticipantsStudents aged 11–13 years.Primary and secondary outcome measuresCoproduced research protocol including an interactive science workshop delivered in schools; school, parental and student recruitment rates; adherence to protocol and adverse events; ability to extract and genotype saliva samples; student enjoyment of the science workshop and qualitative analysis of teacher focus groups on acceptability and feasibility.ResultsFive secondary schools participated in the coproduction phase, and three of these took part in the research study (eligible sample n=868 students). Four further schools were subsequently approached, but none participated. Parental opt-in consent was received from 98 parents (11.3% eligible sample), three parents (0.3%) actively refused and responses were not received for 767 (88.4%) parents. We obtained saliva samples plus consent for data linkage for 79 students. Only one sample was of insufficient quality to be genotyped. The science workshop received positive feedback from students. Feedback from teachers showed that undertaking research like this in schools is viewed as acceptable in principle, potentially feasible, but that there are important procedural barriers to be overcome. Key recommendations include establishing close working relationships between the research team and school classroom staff, together with improved methods for communicating with and engaging parents.ConclusionsThere are major challenges to undertaking large-scale genetic mental health research in secondary schools. Such research may be acceptable in principle, and in practice DNA collected from saliva in classrooms is of sufficient quality. However, key challenges that must be overcome include ensuring representative recruitment of schools and sufficient parental engagement where opt-in parental consent is required.

Exploring the research needs, barriers and facilitators to the collection of biological data in adolescence for mental health research: a scoping review protocol paper

“… 19 Where studies are beginning to explore richer biological measures, recruitment to such studies may encounter several barriers. A school-based pilot study, conducted by Warne et al collecting salivary cortisol samples found that only 11.3% of parents provided consent for their child to participate, despite the coproduction of the protocol with key stakeholders including parents and children, 20 demonstrating some of the possible barriers which can affect this research. When research in child and adolescent populations includes biological data collection, lower recruitment rates may be due to the burden and acceptability of the research; in a study exploring child and adolescent participation in research, Gattuso et al found high rates of refusal to participate, which often related to the use of data collection methods, such as blood sampling, which were perceived to be invasive and burdensome.…”

“…For example, Warne et al acknowledged a lack of diversity in the sample recruited in the salivary cortisol study. 20 Predominantly, research looking at biological mechanisms of mental disorders has focused on adults, and there is a sparsity of biological research on mental disorders, such as depression, in adolescence. 25 Looking at the acceptability of biological data collection in children, Condon highlighted that those who drop out of research or do not participate efficiently, are possibly those who are most important to investigate, tending to be those from under-represented groups, 26 and other research highlights that higher levels of attrition are seen in those with lower socioeconomic status or mental health difficulties.…”

“… 32 In a research setting, Warne et al note that engaging with stakeholders serves as a facilitator, similarly as it helps to increase understanding of the research and topic area, as well as improving protocols and recruitment. 20 …”