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Death literacy: A document analysis review of the United Kingdom's four countries' policies
Daniella Holland-Hart1, Jennifer Rogerson1, Michelle Edwards1
1Marie Curie Research Centre, Division of Population Medicine, Cardiff University, UK.
Abstract:
Death literacy is an emerging concept within academic and social spheres, reflecting increasing recognition that people need to be better prepared for death and dying. The extent to which key features of death literacy are embedded in policies indicates how death and dying are framed and prioritised. Therefore, how the term 'death literacy' and its components have been adopted in UK governments' policies required exploration. This study aimed to analyse post-2015 UK state-level (Westminster) and national (England, Northern Ireland, Scotland and Wales) policies to explore how death literacy is framed and described. A document analysis of policies was conducted using the READ approach, comprising reading materials, data extraction, data analysis and distilling the findings. UK and national governments' and health services' websites were searched. A thematic policy analysis was conducted, mapping content to Noonan et al. - features of death literacy (knowledge, skills, experiential learning and social action). Key findings were outlined in a narrative format. Initially, 11,063 records were screened, 59 documents were eligible for data extraction and a final 22 papers were selected. Findings included that death literacy was not explicitly referenced, despite key features of death literacy being present. These elements focused on knowledge and skills relating to death and dying, including publics', caregivers' and professionals' understanding of end-of-life processes, predominantly relating to the skills of healthcare professionals. The policies also incorporated social action through community engagement and support. Elements of experiential learning, including coproduction of health services, were only referred to minimally. Despite no explicit reference to death literacy, key features were evident within UK policies, which focused on knowledge and skills relating to death and dying through palliative and end-of-life care processes. Future policies should explicitly outline a consolidated approach to death literacy, with the aim of improving experiences and preparedness relating to death, dying and end-of-life. These should embed strategies to implement multi-level, cross-departmental, and new public health approaches that addresses systemic inequalities, and to enhance experiential and socially focused initiatives.
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