The Experience of Facilitating Inclusive Research Advisory Groups With Parents and People With Intellectual Disability and/or Autism Spectrum Disorder

Andrew Cashin; Michelle Kersten; Virginia Howie; Amy Pracilio; Julia Morphet; Ken Griffin; Julian N Trollor; Nathan J Wilson

doi:10.1097/ANS.0000000000000497

The Experience of Facilitating Inclusive Research Advisory Groups With Parents and People With Intellectual Disability and/or Autism Spectrum Disorder

ANS Adv Nurs Sci. 2023 Apr 20. doi: 10.1097/ANS.0000000000000497. Online ahead of print.

Authors

Andrew Cashin¹, Michelle Kersten, Virginia Howie, Amy Pracilio, Julia Morphet, Ken Griffin, Julian N Trollor, Nathan J Wilson

Affiliation

¹ Faculty of Health and Human Sciences and Health Clinic, Southern Cross University, Lismore, New South Wales, Australia (Drs Cashin and Howie and Ms Pracilio); School of Allied Health, Exercise and Sports Sciences, Charles Sturt University, Port Macquarie, New South Wales, Australia (Dr Kersten); Nursing & Midwifery, Monash University, Peninsula Campus, Frankston, Victoria, Australia (Dr Morphet); College of Emergency Nursing Australasia (CENA), Hobart, Tasmania, Australia (Dr Morphet); Australian Primary Health Care Nurses Association, Melbourne, Victoria, Australia (Mr Griffin); Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW Medicine & Health, UNSW Sydney, New South Wales, Australia (Dr Trollor); and School of Nursing and Midwifery, Western Sydney University, Hawkesbury Campus, Richmond, New South Wales, Australia (Dr Wilson).

PMID: 37185206
DOI: 10.1097/ANS.0000000000000497

Abstract

There is little nursing research about process issues in conducting inclusive project advisory groups of people with autism and/or intellectual disability or those who are parents/carers of this cohort. Through a descriptive qualitative design, this article aims to analyze the processes, challenges, and solutions when facilitating these groups for a nursing project in Australia. Reflexive thematic analysis was utilized to analyze field notes and meeting minutes. Results highlight the need for a defined, robust communication process between researchers and advisory groups, skilled facilitators, and careful planning of when in the life of the project the groups can contribute meaningfully. This project offers a proposed framework for the valuable contribution of lived experiences from research advisory groups.