Help to make virtual care better for people with intellectual disability

TITLE: Help to make virtual care better for people with intellectual disability.

BACKGROUND: Accessing appropriate and timely health care can be difficult for people with intellectual disability due to discrimination, unconscious bias and communication barriers. In NSW, specialist teams work alongside mainstream health services to assist people with intellectual disability. The delivery of specialist services to people with intellectual disability in NSW has required a shift from in-person services to include virtual care. Triggers for this shift include expansion of specialist services to more rural and remote areas of NSW and the COVID-19 pandemic. This rapid shift to deliver online care has created challenges and opportunities. Clinicians, clients, families, and health service partners have transitioned to virtual care with varying levels of willingness. This reservation is understandable given the limited guidance currently available within the NSW Model of Care for Intellectual Disability regarding the use of virtual care.

AIMS: This study aims to determine if the delivery of virtual care services is feasible, acceptable, inclusive, and accessible to people with intellectual disability, their carers and specialist intellectual disability clinicians; and to co-design resources to support the engagement of clients, carers, and clinicians using virtual care.

METHODS: Nine local health districts across NSW are participating, providing a project footprint that is geographically, culturally, and socially diverse. A mixed-methods design involving surveys, interviews, focus groups, and co-design workshops is proposed. Participants will include clients, carers, specialist clinicians, and referring mainstream clinicians. Quantitative data analysis of survey data will be undertaken. Interview and focus group data will be analysed using qualitative methods of thematic analysis to identify barriers and enablers to using virtual care and to understand individual experiences of using virtual care.

INCLUSIVE AND ACCESSIBLE RESEARCH: The planning of this study has provided considerable learning and collaboration opportunities for the research team to ensure that the project is inclusive of the needs of people with intellectual disability. For example, through the creation of videos to inform participants about the research, translating research documents into Easy Read, ensuring consent and interview procedures include initial assessment of communication needs, are supportive of participants’ communication needs, and that research processes are responsive to changes in participants’ health status over the course of the project.

IMPLICATIONS: The research team has undertaken a learning journey towards adopting and advocating for inclusive and accessible research practices when working with people who have an intellectual disability. These learnings will be shared during the presentation.