Introduction Despite known benefits of advance/anticipatory care planning (ACP), uptake remains low across the UK and internationally.
Aims We integrated data from three complementary sources to explore how diverse UK citizens perceive ACP to inform better public messaging, information and engagement.
Method A scoping review of international research on patient-carer-public understanding and attitudes to ACP applied Joanna Briggs institute methodology (17 papers). Online public consultations with small groups of older people, relatives of care home residents, learning disability support workers, and minority ethnic community leaders/advocates (n=33) analysed thematically. Researchers supported a structured content and quality standards analysis of public-facing ACP websites (UK and Ireland ), international ) by 20 diverse public volunteers and our PPI team members.
Results Poor knowledge and awareness of ACP terminology, content, and purpose combined with misunderstandings about cardiopulmonary resuscitation decisions and forms. Fears were common about ‘tempting fate’ by discussing dying, developing dementia and/or needing admission to a care home, causing distress to family members, autonomy delegated to others, and problematic future prediction. Lack of trust in the system, diverse social norms among ethnic groups, and insufficient integration across health plans for people with disabilities emerged. Websites varied widely in accessibility, readability and content with confusing inconsistencies.
Conclusion Public information on ACP is inadequate to address inequalities in access and lack of knowledge needed to prepare and engage people, so more relevant and accessible ACP resources in diverse formats are essential.
Impact Findings and recommendations from citizens are being used to guide a current review and improvements to the ACP content on Scotland’s public information website (www.nhsinform.scot/acp).
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