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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Working together as scientific and experiential experts: how do current ethical PAR-principles work in a research
Karijn Aussems1,2, Jet Isarin1, Alistair Niemeijer3
1Academy, Royal Dutch Kentalis, Utrecht, the Netherlands.
Abstract:
Participatory Action Research (PAR) brings unique ethical challenges. Scholars have developed seven ethical principles to address these challenges. So far, little has been published on how these ethical principles (are put to) work in different fields. We used the principles to evaluate our collaboration with co-researchers with developmental language disorder (DLD). This article aims to explore how the principles helped to reflect on the ongoing research practice. First, we needed to simplify the language of the principles so that the co-researchers could understand how they relate to concrete practices. Second, the co-researchers needed to be reminded of specific events before they could relate the principles to their own experiences. Lastly, for an evaluation of (co-) researchers dealing with multiple roles, from friend to colleague and client, this theme has been specifically included to the principle of personal integrity, so that it cannot be overlooked. Looking through a care ethical lens, we suggest speaking of practical insights rather than (ethical) principles, as it more clearly communicates that these insights are based on learning by doing and are not fixed, but build on (good) practices, whilst still allowing enough room for adjustments to the particularities inherent to each research process.
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