City Research Online

Abstract

Background:

Autistic people with complex support needs (ACSN) remain underrepresented in research (Russell et al., 2019). In part because of challenges adapting research processes and methods to be accessible for individuals with diverse needs (Maes et al, 2020). Collaborating with the community concerned is critical when considering and implementing adaptions to ensure research effectively and meaningfully meets needs.

Objectives:

My aim is to co-design more accessible ways of carrying out research by working collaboratively with teachers, families, researchers and autistic people.

Methods:

Experience-Based Co-Design (EBCD) has been used in healthcare settings to improve care pathways for patients together with patients (Donetto et al., 2014). It involves a cyclical process initially capturing the experiences of everyone concerned through formal observations and interviews. These were analysed drawing on aspects of framework and template analysis with key themes identified and carried forward to create so-called ‘Touch-Point videos’. The videos were shared in co-design meetings stimulating discussion of changes needed to improve services. I have adapted this methodology in partnership with autism researchers, school professionals, children, and their families to co-develop guidelines and best practice for improvements in how research answers important questions meaningfully.

Results:

Four touchpoint animations were co-produced drawing on experiences shared during interviews. These explored the following areas: ethics and securing ongoing assent; workload and capacity; Communicating effectively with stakeholders; designing and delivering inclusive projects. Stakeholder groups worked together in a series of co-design workshops to develop guidelines for ethics committees when approving studies that involve ACSN as well as best practice guidelines for researchers.

Here I share the lessons learnt from engaging multiple stakeholder groups in co-design along with the artifacts produced through this process.

Conclusions:

Adopting co-design methodologies is not without its challenges and researchers should be aware of these in order to work effectively with co-design partners. Despite the paucity of research with this population and the perceived gap between research and practice in terms of caring for autistic people with complex support needs, we found a remarkable amount of shared experience and overlap in terms of stakeholders attitudes and experiences. This proved a sound basis for co-design and has resulted in the production of useful resources to support more inclusive approaches to autism research.

Publication Type:	Thesis (Doctoral)
Subjects:	H Social Sciences > HV Social pathology. Social and public welfare L Education > LC Special aspects of education R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Departments:	School of Health & Medical Sciences > Department of Psychology & Neuroscience School of Health & Medical Sciences > School of Health & Medical Sciences Doctoral Theses Doctoral Theses

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