TY - JOUR
T1 - Information on advance care planning on websites of dementia associations in Europe
T2 - A content analysis
AU - Monnet, Fanny
AU - Pivodic, Lara
AU - Dupont, Charlèss
AU - Dröes, Rose-Marie
AU - van den Block, Lieve
N1 - Funding Information: This work was supported by Marie Sklodowska-Curie; Fondation Francqui - Stichting; Research Foundation Flanders. Acknowledgements Funding Information: The research presented in this paper was carried out as part of the DISTINCT project, a Marie Curie Innovative Training Network (ITN), H2020-MSCA-ITN-2018, under grant agreement number 813196. LP is a Senior Postdoctoral Fellow of the Research Foundation-Flanders (FWO). LVdB is Francqui Research Professor (2020-2023). RMD is funded by the Foundation of Support VCVGZ located in the Netherlands. We would like to thank the dementia associations for their help in identifying ACP content on their websites and Jane Ruthven for English editing. We also thank Beliz Budak, Gianna Kohl, Jaroslav Cibulka, Simone Felding, Mauricio Molinari Ulate & Viktoria Hoel for their help with the translation of the ACP content on the websites. Publisher Copyright: © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
PY - 2023
Y1 - 2023
N2 - Objective: To gain insight into the advance care planning (ACP) content provided on dementia associations’ websites in Europe. Methods: We conducted a content analysis of dementia associations’ websites in Europe regarding ACP information, using deductive and inductive approaches and a reference framework derived from two ACP definitions. Results: We included 26 dementia associations’ websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention ACP. The information on the remaining 16 varied in terms of themes addressed and amount of information. Four explicitly define ACP. Several websites made multiple references to legal frameworks (n = 10, 705 excerpts), choosing legal representatives (n = 12, 274 excerpts), and care and treatment preferences (n = 14, 89 excerpts); while themes such as communication with family (n = 9, 67 excerpts) and professionals (n = 9, 49 excerpts) or identifying personal values (n = 9, 73 excerpts) were mentioned on fewer websites or addressed in fewer excerpts. Conclusion: ACP content is non-existent in 10 out of 26 dementia associations’ websites. On those that have ACP content, legal and medical themes were prominent. It would be beneficial to include more comprehensive ACP information stressing the importance of communication with families and professionals, in line with current ACP conceptualisations framing ACP as an iterative communication process, rather than a documentation-focused exercise.
AB - Objective: To gain insight into the advance care planning (ACP) content provided on dementia associations’ websites in Europe. Methods: We conducted a content analysis of dementia associations’ websites in Europe regarding ACP information, using deductive and inductive approaches and a reference framework derived from two ACP definitions. Results: We included 26 dementia associations’ websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention ACP. The information on the remaining 16 varied in terms of themes addressed and amount of information. Four explicitly define ACP. Several websites made multiple references to legal frameworks (n = 10, 705 excerpts), choosing legal representatives (n = 12, 274 excerpts), and care and treatment preferences (n = 14, 89 excerpts); while themes such as communication with family (n = 9, 67 excerpts) and professionals (n = 9, 49 excerpts) or identifying personal values (n = 9, 73 excerpts) were mentioned on fewer websites or addressed in fewer excerpts. Conclusion: ACP content is non-existent in 10 out of 26 dementia associations’ websites. On those that have ACP content, legal and medical themes were prominent. It would be beneficial to include more comprehensive ACP information stressing the importance of communication with families and professionals, in line with current ACP conceptualisations framing ACP as an iterative communication process, rather than a documentation-focused exercise.
KW - advance care planning
KW - content analysis
KW - dementia
KW - dementia associations
KW - online information
UR - http://www.scopus.com/inward/record.url?scp=85142503138&partnerID=8YFLogxK
U2 - https://doi.org/10.1080/13607863.2022.2146051
DO - https://doi.org/10.1080/13607863.2022.2146051
M3 - Article
C2 - 36420632
SN - 1360-7863
VL - 27
SP - 1821
EP - 1831
JO - Aging and Mental Health
JF - Aging and Mental Health
IS - 9
ER -