Dupont C, Smets T, Monnet F, Pivodic L, De Vleminck A, Van Audenhove C, Van den Block L. A website to support people with dementia and their family caregivers in advance care planning: Results of a mixed-method evaluation study. Patient Educ Couns. 2024 Jun 25;127:108357. doi: 10.1016/j.pec.2024.108357.
Abstract
Objective: This study aimed to evaluate a theory-based website to support people with dementia and their families in the advance care planning (ACP) process.
Methods: We conducted an eight-week evaluation study with a convergent parallel mixed-methods design involving people with mild to moderate dementia and their family caregivers who used the website at their convenience. Interviews were conducted at baseline and after 8 weeks to evaluate usability, acceptability, feasibility, experiences, and effects on ACP knowledge, attitudes, perceived barriers to engaging in ACP, self-efficacy and skills to engage in ACP.
Results: We included 52 participants (21 people with dementia and 31 family caregivers). In the interviews, all participants considered the website useful and valued the ACP content. Morever, participants reported that family caregivers mostly used the website alone or with the person with dementia. Participants' ACP knowledge, self-efficacy, and skills improved after 8 weeks compared the beginning of the study.
Conclusion: The website may be an ideal introduction for those wanting to start ACP, providing user-friendly content and features for initiating and exploring ACP.
Practical implications: ACP in dementia requires a tailored approach. Extra support is crucial for website adoption, emphasising the role of family caregivers while respecting individuals' autonomy.
Keywords: Advance care planning; Communication; Dementia; Internet; Support.
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