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 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.

Evaluating an advance care planning website for people with dementia and their caregivers: Protocol for a mixed method study

“…In this design, quantitative and qualitative data are analysed independently, and integrated at the point of interpretation. Previous research among family caregivers and health professionals, 23 and studies on web-based ACP interventions, 28 – 30 have shown that people with dementia and their families wish to engage in ACP at their own pace. 23 Hence, we estimated that an 8-week period would be a long enough time frame to allow participants to use the website.…”

“…First, we identified existing evidence on web-based ACP tools and defined the content of the ACP website with family caregivers and dementia experts. 23 Next, we developed the ACP website using the SCRUM method, which emphasises the role of feedback loops. 24 To improve the ultimate uptake of new interventions – such as our ACP website – by end-users, it is essential to systematically evaluate them before they are implemented.…”