Voices of Children with Neurodevelopmental Disorders in Qualitative Research: a Scoping Review

With the increasing recognition that the voices of children need to be included in matters that affect their lives, this scoping review aimed to investigate the methods that have been used in qualitative studies to support the participation of children with neurodevelopmental disorders in research. Studies were identified through a systematic scoping review of literature published between January 2009 and June 2019 in a number of databases; SCOPUS, Embase, PsycINFO, Applied social science index and abstract (ASSIA) and ERIC. Forty-one studies were assessed using the eligibility criteria. Nineteen studies were included following evaluation and results synthesised using the PRISMA guidelines. This review shares how the 19 studies consider space, voice and audience as concepts of participation. Some studies clearly augmented verbal conversations with other methods to elicit the child’s voice. The expertise of the researcher appears fundamental to their capacity for innovation, their style and flexibility of interviewing and their capacity and willingness towards adaptation of the research tools as the research process unfolds. Finding ways to circumvent children’s difficulties with communication and expression must be innovative.