Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

• DOI: 10.1111/hex.13552
• Publication Date: 2022-06-18T10:32:49Z
• Authors: Emily West; Pushpa Nair; Narin Aker; Elizabeth L. Sampson; Kirsten Moore; Jill Manthorpe; Greta Rait; Kate Walters; Nuriye Kupeli; Nathan Davies
• Keywords: Advance Care Planning; Reflexivity

Abstract Introduction COVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health social care systems necessitated a rapid‐response approach to planning decision‐making in this population, reflexivity responsiveness changing individual system needs at its core. Considering this, decision‐aid help families of persons was developed. Objectives To coproduce dementia, the who for them, family carers support decisions during pandemic beyond. Methods Semi‐structured interviews were undertaken 2020 with: (1) staff from two English national end‐of‐life supportive organizations; (2) Simultaneously, rapid review current evidence making older end life undertaken. Evidence these inputs combined shape through series workshops key stakeholders, including our patient public involvement group, which consisted person carers; group clinical academic experts policy charity leads. Results The existing highlighted need consider both process outcome elements families. qualitative discussed wide range topics, trust, agency confusion context COVID‐19. primarily focussed moves, legal matters, carer wellbeing help‐seeking. Conclusions Combining different sources forms robust systematic that proved efficient valuable creating novel within output is an evidence‐based practical coproduced carers, leading palliative organizations. Patient or Public Contribution We worked other stakeholders throughout study, study development design inclusion stakeholder dissemination.