Ethical Considerations for Doing Research with, and in Relation to, Disabled Children

Abstract

Issues related to disability and childhood are frequently examined across the social sciences and humanities. Many researchers conduct studies with disabled children as the focus of study, as research participants and/or as research drivers. Disabled children represent two categories of identified vulnerability, thus, requiring stringent ethical boundaries in terms of recruitment, consent, research methods, analysis, disclosure and knowledge mobilisation. Although many safeguards apply to research with all children, the focus on disability and disabled childhoods initiates further ethical scrutiny. In this chapter, the authors examine a number of ethical dilemmas that have emerged when conducting research with, and in relation to, disabled children. In particular, the authors will examine the roles of disabled children and youth in advancing research on policy and practice within education and care sectors. The authors query the possibilities and limitations that emerge when employing institutional ethnographic, participatory action and phenomenological research. The chapter unpacks some of the tricky tensions around asking children to speak about disability and share their experiences of disablement when disability is so frequently stigmatised. The authors examine the impacts of predetermined categories of impairment within quantitative research. Across methodologies, data collection based on assumptions of impairment can skew analyses towards a medicalised framework of disability, leaving little room for socio-cultural perspectives on disablement, including how these approaches trigger ethical issues around notions of representation and agency in research with disabled children.

Citation

Parekh, G., Underwood, K. and Atwal, A. (2021), "Ethical Considerations for Doing Research with, and in Relation to, Disabled Children", Spencer, G. (Ed.) Ethics and Integrity in Research with Children and Young People (Advances in Research Ethics and Integrity, Vol. 7), Emerald Publishing Limited, Leeds, pp. 73-86. https://doi.org/10.1108/S2398-601820210000007010