Accepted for/Published in: JMIR Research Protocols
Date Submitted: Mar 2, 2023
Date Accepted: May 6, 2023
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
An advance care planning website for people with dementia and their family caregivers: Protocol for a development and usability study
ABSTRACT
Background:
Web-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration given the sensitive topic and the specific needs of people with dementia and their families.
Objective:
This paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families.
Methods:
The development of the website is based on a validated process map for the development of web-based decision support interventions and on the Medical Research Council (MRC) framework for complex intervention development and evaluation. Additionally, we apply a user-centred approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach of the website. Participants and a PPI group give feedback on four prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers and 3 dyads) in usability testing. Usability testing includes: (i) a think-aloud exercise; (ii) researcher observations and (iii) the System Usability Scale (SUS) questionnaire. Qualitative data from the think-aloud exercises and interviews is analysed using thematic analysis.
Results:
This study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. Results of the development and usability should be published during 2023.
Conclusions:
The methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers and other stakeholders. This protocol might stimulate active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study.
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