Ms Laurel Mimmo1,2, Associate Professor Sue Woolfenden1,2, Professor Joanne Travaglia4, Professor Iva Strnadová1, Ms Maya Tokutake, Ms Karen Phillips2, Mr Matthew van Hoek, Ms Debbie van Hoek, Dr Éidín Ni She1, Dr Bronwyn Newman3, Associate Professor Reema Harrison3
1University of NSW, Randwick, Australia, 2The Sydney Children’s Hospitals Network, Randwick/Westmead, Australia, 3Australian Institute of Health Innovation, Macquarie University, Macquarie Park, Australia, 4University of Technology, Sydney, Sydney, Australia
Health services and researchers seek patient/carer perspectives on their healthcare experiences to inform service enhancements and identify research priorities. Increasingly the views of children/young people are sought. However the methods for obtaining the experiences of children/young people in hospital are often not accessible for those with intellectual disability, exacerbating the health inequities experienced by this population (Emerson & Spencer, 2015).
Inclusive approaches aim to minimise hierarchy between the researcher and the population or group under study, so members of the population have control and input at any and/or all phases of the research (Nind, 2014). One such approach is training co-researchers (Nind, Chapman, Seale, & Tilley, 2015; Strnadová et al., 2014).
Between July-October 2020 we conducted six co-researcher training workshops with two young people with intellectual disability. The co-researchers learnt participatory research methods such as photovoice and body mapping. Through the workshops we have developed a toolkit of participatory research methods for interviewing children with intellectual disability about their experiences of hospital. Ongoing co-research activities include co-presenting, data analysis, and co-authoring a manuscript for planned co-design workshops (submitted, BMJ Open). Results of an evaluation of the workshops will be included in this presentation.
Inclusive research can enable children/young people with intellectual disability to meaningfully participate in such activities and help address the associated inequities. Using methods to capture and include the experiences of healthcare for children/young people with intellectual disability can inform targeted improvements to healthcare delivery for all children in hospital.
Laurel Mimmo works in the Clinical Governance Unit at Sydney Children’s Hospital, Randwick, is a PhD candidate in Faculty of Medicine, UNSW and SPHERE translational research fellow. She has over 15 years’ clinical experience as a paediatric nurse. Laurel’s doctoral studies are exploring hospital experiences for children with intellectual disability.