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A critical examination of knowledge building practices and products in 'parent focused cochlear implant research' 1990-2020
Since the approval of paediatric cochlear implantation in prelingually deaf infants and children around the turn of the 21st century, researchers have become increasingly interested in obtaining first hand data from parents of children with cochlear implants. Subsequently, many parents of children with cochlear implants have been recruited to be measured, evaluated, categorised and interpreted through a variety of lenses and for a range of purposes. The collective result of this research activity is a substantial, though to date largely unscrutinised body of ‘parent focused cochlear implant research’. This specialised field of research sits at the nexus of more established research domains (e.g., research about deafness, research about disability, research about parenting, research about medical technologies), all of which have been demonstrated in previous scholarship to be domains that unavoidably implicate researchers in a range of complex choices (i.e., ontological, epistemological, ethical, political and linguistic choices), that can have real effects (beneficial or detrimental) on the lives of people whose lives they represent. Understanding the way that researchers’ choices shape knowledge about paediatric cochlear implantation is important, and this multi-disciplinary ‘thesis by publication’ seeks to contribute to this understanding in a number of ways. First, the field is sketched out in terms of the historical and philosophical legacy it owes to the four major sociological traditions (i.e., positivist, interpretivist, critical, pragmatist) to varying degrees. Next, key epistemological ‘gaps’ and ‘gluts’ within the field are mapped out via a scoping review, with notable findings of this review including sampling issues, prevailing ‘deficit-tragedy’ assumptions about deafness, a disproportionate focus on evaluating parents’ internal and individual problems (rather than external, public problems), and scarcity of participatory or co-design approaches to research. In addition, a strong preference for two methods in particular is revealed, namely (i) the psychometric instrument and (ii) the qualitative interview. The middle two articles examine the implications of these choices, drawing together historical and contemporary critiques of each method in reference to the data, and, in doing so, calling into question the self-evidence of their value as tools for building epistemologically and ethically sound and useful knowledge about paediatric cochlear implantation. Researchers’ linguistic choices are explored in greater detail in the final paper; with corpus linguistics techniques employed to highlight the discursive construction of a host of ‘good’ and ‘bad’ types of parents and parenting within this field. These findings are considered in relation to their relationship to anecdotal complaints of scientific ‘parent blaming’ in the clinical and scientific discourses surrounding paediatric cochlear implantation. The final chapter recommends ways that future research in this domain might be conducted in alternative ways to ensure it produces knowledge that is more relevant, respectful, participatory and useful for D/HH children and their families.