Background Reviews and inquiries into end of life care for people with learning disabilities consistently recommend that services involve them in end of life care planning. However, there is limited evidence on how to do this.
Aims To co-produce a toolkit of end of life care planning approaches and resources that are welcomed by and are useful for people with learning disabilities, and workable within adult social care services.
Methods (a) A scoping review of existing resources and (b) focus groups with key stakeholder groups, including people with learning disabilities, family carers, support staff, learning disabilities service managers, professionals working in learning disabilities and/or palliative care and policy makers (n=55); these informed (c) Six Experience-Based Co-Design workshops including representatives from these stakeholder groups and researchers with and without learning disabilities. Workshops included agreeing on key principles and preferred approaches, assessing existing resources and developing new resources to fill identified gaps.
Results (a) A shortlist of 21 resources included 9 accessible resources to be used with people with learning disabilities. However, most resources were not underpinned by empirical evidence. (b) Stakeholders identified 4 distinct parts of end of life care planning: talking about dying; what matters to me; planning for illness; and after-death/funeral planning. This affected views on when end of life care planning should start, with who, and why. (c) The co-design groups created a preliminary end of life care planning toolkit with separate resources for ‘illness planning’ and ‘funeral planning’, consisting of conversation pictures, pictorial choice cards and staff guidance. These will be trialled within learning disabilities services in autumn 2023.
Conclusion The active involvement of stakeholders, including 24 people with learning disabilities, was crucial to developing sensitive, appropriate and useful end of life care planning resources and guidance.
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