Co-designing from the heart to improve virtual care for people with intellectual disability

Background &amp; Aims:<br/><br/>Driven by the need to reach people in rural and remote locations and the systemic changes prompted by the COVID-19 pandemic, specialist services for people with intellectual disability are increasingly integrating virtual care options into their service delivery models. Our research team, including clinicians, researchers, and educators with experience working with people with disabilities, initially examined the feasibility, acceptability, and inclusivity of virtual care for people with intellectual disability, carers, and specialist clinicians. Insights from this earlier work informed a co-design process which included people with intellectual disability, carers, support workers, disability service providers, educators, and specialised intellectual disability clinicians. This phase of our research aimed to improve virtual care service delivery for people with intellectual disability through the co-design of resources that support positive virtual care experiences for clients and clinicians.<br/><br/>Co-design interventions:<br/><br/>People with intellectual disability and people who provide formal and informal support to people with intellectual disability were invited to explore ways of improving virtual care through participation in co-design workshops. Prior to the workshops, patient stories and patient journeys were developed based on learnings from the initial phase of our research. Patient journeys through the virtual care experience were created in audio and visual formats. Visuals were formatted in Easy Read to enhance accessibility for people with intellectual disabilities. Patient stories and journeys were used as workshop prompts to reduce the need for participants with lived experience of intellectual disability to share their own personal stories if they preferred not to. Workshop participants were invited to identify challenges in virtual care delivery evident in the patient stories that resonated with their own experiences. Participants then voted on which challenge to address and engaged in collaborative brainstorming to develop resources aimed at addressing the identified challenge. Following the workshops, the research team developed initial prototypes of the resources which were shared with participants, who were invited to give feedback on the prototypes via each participant’s preferred method. Researchers then refined the resources based on feedback provided by participants.<br/><br/>Co-design outcomes:<br/><br/>In total, 28 people attend three online workshops and one in-person workshop during February-March 2025. Four prototypes of resources were created from the ideas generated by the workshops. These included: (1) a healthcare team video introduction to share with clients and carers prior to healthcare appointments, (2) a checklist for clinicians providing virtual care for people with intellectual disability to assess suitability and identify supports and adjustments needed to create a positive virtual care experience, (3) a templated letter outlining clients’ preferences for virtual care delivery that can be shared with healthcare providers prior to an appointment and (4) a patient journey video depicting the experience of virtual care from the perspective of a person with intellectual disability and from the clinician’s perspective.<br/><br/>Implications:<br/><br/>Co-design offers a meaningful way to include people with intellectual disability, their carers and specialist clinicians in shaping positive virtual care experiences. This collaborative approach is valuable for generating relevant resources to address identified challenges in service delivery.