Codesign methods when developing a decision guide for eating and drinking problems among hospital patients with severe dementia

AbstractBackgroundDecisions about eating and drinking for people with severe dementia in acute hospitals are often difficult. Using a codesign process, we developed a decision guide for family carers and hospital professionals to help everyone making these decisions.MethodWe conducted a systematic review and qualitative interviews with people with mild dementia, family carers and hospital professionals in the UK. We ran four online workshops with family carers and hospital professionals to codesign the decision guide. In parallel with the codesign workshops, a matrix approach was used to synthesise data from all studies, including the workshop data, and to develop a prototype of the decision guide. We refined the prototype through workshops and discussions among the research team and lay people. User testing evaluated the prototype, which finalised the decision guide.ResultMost participants were aware of the limited benefits of artificial nutrition and hydration for people with severe dementia. However, participants often found conversations and decision‐making processes confusing and fragmented in hospitals. The codesign process highlighted the importance of meeting individuals’ needs and preferences. The decision guide aimed not only to help people reach evidence‐based decisions but also to support conversations and decision‐making processes. It was designed to clarify the decision‐making process, provide necessary information about eating and drinking interventions, and elicit the values/preferences of everyone involved. It emphasises person‐centred care, best‐interests decision‐making, and multidisciplinary team approaches. From the user‐testing, family carers and hospital professionals perceived the decision guide to be useful in starting conversations and helping with the decision‐making processes. The final version of the decision guide was widely disseminated and is being used in clinical practice.ConclusionThe codesigned decision guide may facilitate conversations between family carers and hospital professionals and help them reach shared decisions that meet the needs and preferences of people with severe dementia. Further evaluation research of the decision guide is required to test its real‐world impacts.