Interview with Dr Flavia H. Santos, Assistant Professor at University College Dublin
Dr Flavia H. Santos is an Assistant Professor at University College Dublin and Ad Astra Fellow at the UCD School of Psychology in Ireland. She is co-editor of Mental Health, Intellectual and Developmental Disabilities and the Ageing Process, published by Springer
"This book brings the expertise of international researchers to provide the latest information on the scientific and medical advances that can benefit the mental health of people with life-long disabilities" Prof Tamar Heller.
Further details: https://link.springer.com/book/10.1007/978-3-030-56934-1
Q1. What challenges do you envisage you might face when co-designing with people with cognitive disabilities?
I would consider four elements, which are i) selecting the co-designers, i.e., to achieve a balance between individual characteristics and representativeness with minimal bias, ii) setting the time to work together (respecting their needs and the research environment) and iii) providing feedback on research decisions for the co-designers. The fourth is 'disengagement' as co-designer may have difficulty to differentiate professional partnership and friendship.
Q2. Have you identified any approaches that have proved successful when co-designing with people with cognitive disabilities?
Certainly, building a clear rapport/contract between co-designers and researchers is the first step. Concerning tasks and feedback, the more practical the better. People with intellectual disabilities and autism are frank and responsible, as co-designers they will not be worried or ashamed to tell you if they dislike something related to the project, which is helpful for researchers, especially while designing experiments.
Q3. Can you foresee any ethical difficulties/concerns during the co-design process with people with cognitive disabilities?
In my view, the main ethical dilemma is how to provide recognition for the co-designers work. Co-designers should be classified as consultants, which would allow a financial refund for their work. They also should be acknowledged in all articles related to the project. I do not have the answer, but I raise one question: Should co-designers be co-authors? Of course, it depends on the type of input sought and at which stage of the research is it been gathered. The co-designer will provide critical feedback, but is this the kind of contribution required to list someone as a co-author in a scientific article?