Edwards, Michelle  ORCID: https://orcid.org/0000-0001-7432-2828, Holland-Hart, Daniella ORCID: https://orcid.org/0000-0002-1127-5152, Rogerson, Jennifer, Harrop, Emily, Mann, Mala, Graham-Wisener, Lisa and Sallnow, Libby
2026.
Multiple literacy concepts in dying, death and grief: findings from a scoping review [Abstract].
Palliative Medicine
40
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Abstract
Background: A lack of health literacy drives inequities in health. In pallia- tive care, a lack of health literacy limits access to services, engagement in advance care planning and decision-making and outcomes at the end of life. Over the last decade, literacies such as ‘palliative care literacy’, ‘end-of- life health literacy’, ‘death literacy’ and ‘grief literacy’ have emerged. They explain the knowledge, skills and abilities that people draw upon when managing care, death, and bereavement. These literacies overlap and it is not clear how comprehensively they represent the skills that navigating health and death systems necessitate. Aim/Research question or hypothesis: This scoping review aimed to synthesize the findings of published articles to develop a comprehensive conceptual (and practical) understanding of literacies applied to the con- texts of dying, death and bereavement. Methods: A literature search was conducted on papers published 2004- 2024 that explicitly described the application of ‘literacy’ to palliative care, end-of-life care, dying, death and grief. Titles, abstracts and full papers were screened, data were extracted, and a thematic analysis was conducted. Results: Thirty-five papers were included, ten validation and cross sec- tional studies using literacy measures, fifteen qualitative studies, two reviews, six essays/conceptual papers, and two pilot randomized con- trolled trials. A typology of multiple literacies was derived from these studies which reflects the required knowledge, skills and abilities, from initiation of a palliative care/end-of-life approach, through death and into bereavement (Figure 1). Individual and system related challenges to these literacies are also identified. Discussion: This the first review to capture the multiple literacies that describe the knowledge, skills, and abilities needed to navigate health and death systems dying, caring and grieving. These findings are essen- tial to shape literacy-focused strategies and policies for patients, families and communities to support navigation of these complex systems. Building literacy can inform public health responses to dying, caring and grieving in communities and across populations
| Item Type: | Short Communication |
|---|---|
| Date Type: | Published Online |
| Status: | Published |
| Schools: | Professional Services > Academic & Student Support Service Schools > Medicine |
| Additional Information: | Abstract from The 20th World Congress of the European Association for Palliative Care 14 - 16 May 2026 Prague, Czech Republic |
| Publisher: | SAGE Publications |
| ISSN: | 0269-2163 |
| Related URLs: | |
| Date of Acceptance: | 6 January 2026 |
| Last Modified: | 27 May 2026 16:30 |
| URI: | https://orca.cardiff.ac.uk/id/eprint/187246 |
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