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BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2023

Open Access 01-12-2023 | Dementia | Research

Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals

Authors: Charlèss Dupont, Tinne Smets, Fanny Monnet, Lara Pivodic, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block

Published in: BMC Medical Informatics and Decision Making | Issue 1/2023

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Abstract

Background

Advance care planning (ACP) is a process that enables individuals to define goals and preferences for their future care. It is particularly relevant for people with dementia and their family. Interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the ACP process. However, considering the specific needs of people with dementia, it is important to develop adapted tools for this population. This study was conducted to define the content of an interactive website for people with dementia and their family caregivers to support them in ACP and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals.

Methods

Online focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, using a semi-structured topic guide. To analyse the data, we used thematic framework analysis with a combination of deductive and inductive approaches to coding.

Results

We conducted 4 focus groups with family caregivers of people with dementia (n = 18) and 3 with healthcare professionals (n = 17). Regarding the content of the website, participants highlighted that information on ACP (what and why) and guidance on how to start talking about ACP throughout the dementia trajectory should be included on the website. To increase the usability of the website, most participants considered a text-to-speech and a print option as important functionalities. A lack of computer literacy was found to be the most significant barrier to finding and using the website.

Conclusion

A website for people with dementia and their family caregivers to support them in ACP should focus on comprehensive content on ACP, peer testimonials, and interactive communication tools. Moreover, there should be certain flexibility in navigating through the website so people with dementia and their family caregivers can use it at their own pace. As the next step, we will include people with dementia in developing the website.
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Metadata
Title
Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals
Authors
Charlèss Dupont
Tinne Smets
Fanny Monnet
Lara Pivodic
Aline De Vleminck
Chantal Van Audenhove
Lieve Van den Block
Publication date
01-12-2023
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2023
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-023-02359-1

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