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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Rights Based, Participatory Interviews with Disabled Children and Young People: Practical and Methodological
Patricia McNeilly1, Geraldine Macdonald2, Berni Kelly3,4
1School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
Abstract:
There has been an increased emphasis on the voice of the child since the ratification of the United Nations Convention on the Rights of the Child in 1991. Since that time, health and social care researchers have increasingly involved disabled children and young people in research, rather than relying on the views of adults as proxies, for example, parents and professionals. Drawing on doctoral research and the extensive experience of the authors, the aim of this article is to critically reflect on "what worked" along with the challenges of interviewing the children and young people who took part. Practical and methodological issues, such as the need for thorough preparation, the interview process, understanding the children and young people and managing the presence of others are discussed. Finally, recommendations are made for future researchers, including making participation fun, using a sensitive and individualized approach and conducting multiple visits. It is only by considering these factors that we can meaningfully involve disabled children and young people and facilitate their participation in research interviews. Emphasis here is on the practical issues rather than ethical issues that have been published elsewhere.
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