Voices of Children with Neurodevelopmental Disorders in Qualitative Research: a Scoping Review
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Voices of Children with Neurodevelopmental Disorders in Qualitative Research: a Scoping Review Clare Carroll 1
& Miriam
Twomey 2
Accepted: 14 October 2020/ # Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract 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. Keywords Child voice . Participation . Neurodevelopmental disorders . Researchmethods,
qualitative All children and young people have a right to be included in decision making on matters that affect their lives (United Nations 1989). The United Nations Convention * Clare Carroll [email protected] Miriam Twomey [email protected]
1
Discipline of Speech and Language Therapy, School of Health Sciences, National University of Ireland Galway, Galway, Ireland
2
Inclusion in Education and Society [IES] Research Group, School of Education, Trinity College Dublin, Dublin, Ireland
Journal of Developmental and Physical Disabilities
on the Rights of People with Disabilities (United Nations 2006) promoted the full citizenship rights of disabled people and expression of those rights. Seminally the United Nations Convention for the Rights of Children ([UNCRC] UN 1989) endorsed the rights of children; Articles12 (right to expression of an opinion), 13 (right to express his/her views), 14 (freedom of thought, conscience and religion), 15 (freedom of association and peaceful assembly). Considering these rights Tisdall (2018) states that there has been ‘a significant ‘turn’ in the social sciences and related disciplines to undertaking research ‘with’ rather than ‘on’ children’. Several strands have emerged from this turn; researchers developed ‘participative’ or ‘creative’ methodologies to support their work with children; and they developed new ways in which children can be involved in research. Researcher’s efforts prioritise the realisation of children’s voice. A d
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