Preparing for critical illness: supporting people with intellectual disability to improve experience, communication and decision making through co-created visual resources (Critical CareVIS)

Scientific Abstract People with intellectual (learning) disabilities continue to die earlier, have poorer health, and greater limitations in everyday functioning than others. In addition, these people experience increased hospitalisations, are more likely to remain longer in hospital (up to 5.5 days) or to be readmitted. People with intellectual disabilities often present sicker, with a higher number of co-morbidities at admission, requiring more ICU support, and spend longer ventilated. In addition, discriminatory practices persist for people with intellectual disabilities around intensive care admission decisions, often based on misinformation and not on goal-concordant care consistent with personal values or wishes. In addition, professional attitudes, insensitive information and poor information have all been highlighted as key factors in poor health outcomes for people with intellectual disabilities, suggesting crucial areas for targeting improvement interventions. Making decisions about critical care admission is complex and requires people to consider advanced care planning (ACP), what critical care and critical illness means, and what recovery and long-term health outcomes might look like. Supporting people with intellectual disabilities to make these decisions requires multi-faceted approaches around information-giving (verbal/visual/written). At present, there are no resources and no research in critical care for people with intellectual disabilities. We aim to co-design information resources to help people understand what critical illness, advanced care planning and what critical care entails, and to help reach shared decisions, and support health choices around serious and critical illness. The Plan We will adopt a mixed methods (qual-qual) co-design approach, using co-research principles with people with mild to moderate intellectual disabilities across three interlinked work packages (WP), linked to objectives. Work package 1. addresses Objective 1: to understand information needs of people with intellectual disability (and carers) around what critical illness is, and critical care entails, through in-depth interviews (n=20-22), which are analysed using thematic analysis, with an additional ethical analysis overlaid. Work package 2. addresses Objective 2: to co-design a set of information resources through a series of workshops with 45 people with intellectual disabilities. This work-package involves Double Diamond co-design processes, delivered in workshops. Work package 2. addresses Objective 3: to create pathways to impact through a robust implementation plan, following 3 focus groups with health/social care professionals and people with intellectual disabilities (n=8) about how to use these in practice. This work package is informed and analysed using Normalisation Process Theory. We aim to understand what is important to people when deciding about critical care and treatments. Dissemination: we will develop a set of co-designed information resources (e.g video, podcast, visual information booklet) to be shared widely to people with learning disabilities, family and friends, paid carers, health and social care professionals who provide them with support, via the NHS, GP surgeries, learning disability and critical care charities and other organisations. We will work closely with our stakeholders and PPI partners ensuring any public reports from this project are accessible (writing easy-read versions). We will publish in professional journals, via social media/charity websites/newsletters and present our findings at national conferences and meetings.