Engaging Young People Who Hear Voices in Online Mixed-Methods Research

Parry, Sarah Louise and Djabaeva, Rachel and Varese, Filippo (2018) Engaging Young People Who Hear Voices in Online Mixed-Methods Research. Sage.

Abstract

This case study discusses the first online phase of a mixed-methods three-phase study with young people who hear voices and their parents/carers, populations that are particularly difficult to engage in research due to the widespread stigma surrounding the experience of hearing voices. The account has been developed by the primary researchers, which at this stage includes two early career academics and a postgraduate master’s degree student. Throughout the case study, we discuss the innovative design of online recruitment and participation, and consider a number of challenges that arose throughout the development and early recruitment phases. In particular, we explore some of the challenges around recruitment with groups of people who may associate social stigma with their experiences and the type of participation platforms that can facilitate engagement. In addition, we discuss the processes in place for gaining informed consent with people aged below 16 years and the development of tailored research materials to suit the needs of research participants. Finally, we consider the important role of partnerships and field support in research projects and the complementary ways in which the research team can work together. The complexities of the case are discussed in relation to supporting literature and recommendations for students who may embark upon research that presents similar challenges.