Reflections on an Evidence Review Process to Inform the Co-Design of a Toolkit for Supporting End-of-Life Care Planning With People With Intellectual Disabilities.

Introduction: There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co-design of a toolkit for supporting end-of-life care planning with people with intellectual disabilities. To inform the co-design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice.

The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

Introduction: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities.

Methods: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities.

What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning.

Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services.

Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.

Background: Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co-designing resources to support older people with intellectual disabilities and their families to plan for the future.

Methods: Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience-based co-design process to develop planning ahead resources.

'There's a timebomb': Planning for parental death and transitions in care for older people with intellectual disabilities and their families.

Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death.

Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11) and siblings (N = 16) to understand their perspectives about living with parents and future planning.