Working together as scientific and experiential experts: how do current ethical PAR-principles work in a research team with young adults with Developmental Language Disorder?

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.

Cochlear implantation in children with complex needs: the perceptions of professionals at cochlear implant centres.

OBJECTIVE: To explore the views of cochlear implant centre teams about the process of referral, assessment and rehabilitation for children with complex needs. METHODS: An on-line survey of cochlear implant centres in the UK and in the Netherlands was carried out, with both quantitative and qualitative questions. The survey was designed and piloted by four professionals in each country, experienced in working in cochlear implant services, and with complex children. The open qualitative responses were analysed independently for the emergent themes. RESULTS: Seven centres from Netherlands and eight from UK responded. The proportion of children reported with complex needs ranged from under 10% to between 40 and 60%. Children with complex needs were more likely to be later referred than the norm, and to take longer to assess. There was little agreement about the assessments used prior to implantation, or in follow-up. The most commonly seen additional disability was visual, followed by motor/physical challenges and autistic spectrum disorders. The most reported challenge was assessment, followed by parental expectations, and wearing the system. The least reported concern was educational management. The major goal was seen to be hearing and sensory input, rather than speech and language attainment. All centres commented on the importance of parental observation. CONCLUSION: There is a need for a consensus on the assessment of these children, with the development of more objective parent led observation measures to collect long-term data across centres. Closer collaboration with educators, particularly those with other expertise, would facilitate long-term management and asssessment. Data logging, now available, will help monitor wearing and use of system.