A user-centred website to support advance care planning for people with dementia and their family caregivers: Development and usability study

OBJECTIVE: Advance care planning (ACP) is a dynamic communication process about future care preferences. We aimed to develop and test an ACP support website for people with dementia and their family caregivers.

METHODS: We adopted a user-centred design process to develop and test the ACP support website. A content specification phase included needs assessment, evidence synthesis and translation into preliminary content. A creative design phase included storyboarding, iterative prototyping, and usability testing. People with dementia and family caregivers engaged in usability testing across four iterations, using System Usability Scale questionnaires, and think-aloud and semi-structured interviews. An advisory group with people with dementia, family caregivers, and diverse regional stakeholders was involved. Descriptive statistics and qualitative framework analysis were applied.

RESULTS: Website goals were: providing ACP information and facilitating ACP conversations. A 'what matters most' approach (i.e. enabling users to reflect on 'what matters most' in the present and the future) and non-linear navigation were favoured. We tested the website with 17 people with dementia and 26 family caregivers. Feedback addressed design, navigation and content. Usability scores of 76.4 for family caregivers and 81.3 for people with dementia were achieved. Family caregivers and people with dementia highlighted the value of information and interactive ACP tools, the need for language simplification and harmonised layout. People with dementia experienced challenges in using interactive tools.

CONCLUSION: The user-centred development process, involving diverse stakeholders, led to the development of an ACP support website deemed usable and useful. Future evaluation should focus on acceptability, feasibility and effectiveness of the ACP support website.