Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals
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 doc...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-11-01
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| Series: | BMC Medical Informatics and Decision Making |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12911-023-02359-1 |
| _version_ | 1797630183013875712 |
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| author | Charlèss Dupont Tinne Smets Fanny Monnet Lara Pivodic Aline De Vleminck Chantal Van Audenhove Lieve Van den Block |
| author_facet | Charlèss Dupont Tinne Smets Fanny Monnet Lara Pivodic Aline De Vleminck Chantal Van Audenhove Lieve Van den Block |
| author_sort | Charlèss Dupont |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-11T11:04:34Z |
| format | Article |
| id | doaj.art-a4f76d56e3c64ab0ac6c41d437c76d20 |
| institution | Directory Open Access Journal |
| issn | 1472-6947 |
| language | English |
| last_indexed | 2024-03-11T11:04:34Z |
| publishDate | 2023-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Informatics and Decision Making |
| spelling | doaj.art-a4f76d56e3c64ab0ac6c41d437c76d202023-11-12T12:19:49ZengBMCBMC Medical Informatics and Decision Making1472-69472023-11-012311910.1186/s12911-023-02359-1Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionalsCharlèss Dupont0Tinne Smets1Fanny Monnet2Lara Pivodic3Aline De Vleminck4Chantal Van Audenhove5Lieve Van den Block6VUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB)VUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB)VUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB)VUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB)VUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB)LUCAS Center for Care Research and Consultancy, KU LeuvenVUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB)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.https://doi.org/10.1186/s12911-023-02359-1Advance care planningDementiaUser-needsInternet-based intervention |
| spellingShingle | Charlèss Dupont Tinne Smets Fanny Monnet Lara Pivodic Aline De Vleminck Chantal Van Audenhove Lieve Van den Block Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals BMC Medical Informatics and Decision Making Advance care planning Dementia User-needs Internet-based intervention |
| title | Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals |
| title_full | Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals |
| title_fullStr | Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals |
| title_full_unstemmed | Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals |
| title_short | Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals |
| title_sort | defining the content of a website on advance care planning in dementia a focus group study with family and health professionals |
| topic | Advance care planning Dementia User-needs Internet-based intervention |
| url | https://doi.org/10.1186/s12911-023-02359-1 |
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