Getting It Out There: Reflections on the Process and Impact of Public Engagement Activities in a Study on End-of-Life Care Planning With People With Intellectual Disabilities.

introductionMany tools and interventions developed from research projects are not properly implemented in health and social care practice. Engaging with stakeholders is an important part of the implementation process when developing, sharing and embedding new tools. The Victoria & Stuart Project was a 2-year project that co-designed a toolkit of resources and approaches to support end-of-life care planning for people with intellectual disabilities. It had an inclusively delivered dissemination and engagement workstream to raise awareness of the toolkit throughout the project. In this paper, we describe and reflect on the project's public 'inspiring and informing' engagement activities.

methodsEngagement activities included a project website, weekly blog and newsletter. The project held webinars and was promoted on various social media platforms. One-to-one stakeholder consultations with all members of the project's Research Advisory Group were held. Presentations were given to both academic and non-academic audiences.

resultsEngagement activities were labour-intensive and time-consuming, particularly when creating regular content such as weekly blogs and social media posts. It became obvious that team members did not have expertise in marketing or communication skills and had to learn from experience. In addition, it was difficult to build and maintain a following with a changing social media landscape. There is evidence that the project is on its way to meet the project's engagement-related medium-term outcomes, such as being included in national palliative care reports and accreditation programmes as well as international guidelines.

conclusionPublic engagement is a complex, uncertain and non-linear undertaking, requiring continual reflection and refinement in response to changing circumstances within and beyond the research. We believe a key driver for successful engagement has been employing researchers with intellectual disabilities as well as working actively with core stakeholders throughout the project. Our engagement recommendations are: (1) Involve people with lived experience; (2) Plan and allocate time; (3) Include social media and/or marketing roles in research; (4) Tailor to the audience and platform; (5) Make it engaging and fun; (6) Learn how to make videos; (7) Keep presenting your work; and (8) Make time for stakeholder consultations. PATIENT OR PUBLIC CONTRIBUTION: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J. and R.K.-B.). Researchers with intellectual disabilities have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings, including engagement activities. Palliative care and intellectual disability service provider representatives (G.A., M.W., N.P., R.H. and S.S.) have been closely involved throughout the project. The research was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities, families, representatives from intellectual disability and palliative care organisations, and policymakers.