Preliminary communication
https://doi.org/10.31299/hrri.60.2.7
Informed consent in research involving children with disabilities as participants: analysis of visibility and reporting practices in Croatian open access scientific journals
Ana Blažević Simić
; University of Zagreb, Faculty of Humanities and Social Sciences, Ivana Lučića 3, Zagreb, Croatia
*
Ana Širanović
; University of Zagreb, Faculty of Humanities and Social Sciences, Ivana Lučića 3, Zagreb, Croatia
* Corresponding author.
Abstract
Arising from the basic principles of protecting the rights of research participants, informed consent is a central issue of research ethics. In research involving children as participants, obtaining informed consent is riddled with various challenges. This procedure becomes even more complicated when it comes to children with disabilities. The aim of this research was to analyse reporting practices of reporting on obtaining informed consent in Croatian empirical
research in which the participants are children with disabilities. Using the systematic literature review method and content analysis technique, a total of 73 scientific articles, published in 35 Croatian open access scientific journals, reporting on empirical research involving children with disabilities as participants were analysed. For the purpose of this paper, an analytical matrix consisting of six classification categories was constructed: informed consent of the child, informed consent of the parent/guardian, permission of the ethics committee, adaptation of materials and procedures, adaptation of communication, and adaptation (accessibility) of the research site. The results of the systematic literature review show an increase in the number of studies involving children with disabilities as participants. At the same time, they emphasise
an insufficient representation of (especially detailed) reports on the ethical aspects of children’s participation, as well as point to a discrepancy between reporting on the consent of
the parent/guardian and the consent of the child. The findings of this study recognise the need for further improvements of reporting practices associated with obtaining the informed
consent of children with disabilities.
Keywords
reporting practices; children with disabilities; research ethics; informed consent; systematic literature review
Hrčak ID:
323972
URI
Publication date:
19.12.2024.
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