Social Health Domain 1: Fulfill ones potential and obligations
Guidance
End-users should be involved in the development of web-based advance care planning support tools to ensure their usability and usefulness for end-users. Furthermore, the content of web-based advance care planning tools should be substantiated by scientific evidence.
Explanation and Examples:
More and more web-based advance care planning support tools are publicly available on the internet. We conducted a systematic review of web-based interactive advance care planning support tools. We found numerous interactive web-based advance care planning support tools, varying in terms of their characteristics, functionalities, readability, quality of content, and level of evidence. Most tools were not co-developed with end users; were of low or medium quality; and, with a few exceptions, had not been evaluated in research. Tools should be evaluated through usability and effectiveness testing and should be substantiated with the most recent scientific literature.
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Guidance
An advance care planning website for people with dementia and their family caregivers should focus on providing information and facilitating communication, provided in a user-friendly manner.
Explanation and Examples:
Advance care planning is a process that enables individuals to define goals and preferences for their future care. Digital interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the advance care planning process. However, considering the specific needs of people with dementia, it is important to develop tools that are adapted to this population. We conducted focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, to determine their needs in terms of content of the advance care planning website and how this should be delivered. Some specific recommendations included:
- An advance care planning website should focus on providing advance care planning information, including but not limited to advance directives, and offer guidance on how to start an ACP conversation.
- To increase the accessibility and usability of the ACP website, the inclusion of a text-to-speech option, a print option, and the possibility to increase the font size should be considered.
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Technology for meaningful activities
Guidance
When evaluating the benefits of technological interventions for people with dementia and their carers it is recommended to conduct a process evaluation to understand the possible influence of contextual, implementation and mechanisms of impact factors that may have influenced the intervention outcomes. This will also provide useful information on the conditions for successful implementation of the intervention.
Explanation and example
In our randomised controlled exploratory pilot trial into the FindMyApps programme, a tablet-based selection tool and training to help people with dementia to find apps for better self-management and meaningful activities, we conducted a process evaluation based on the British Medical Research Council’s (MRC) guidance for process evaluation of complex interventions (Moore et al., 2015).
This framework highlights the possible influence that contextual, implementation and mechanisms of impact factors may have on intervention outcomes. The process evaluation in the FindMyApps study provided very relevant information. For instance, with regard to contextual factors we found that it is important that the person with dementia has someone who is easy to approach and who can help them in case of practical problems, and that a helpdesk is in place for more complicated questions and technical problems.
With regard to implementation, it proved important to check if and how much a participant had experience in working with technological devices, and to adapt their training accordingly. Additionally, it proved necessary to personalise the approach to a participants’ awareness of their deficits. This was largely because some people with dementia had a more accurate understanding of their abilities and limitations with respect to their deficits than others. With regard to mechanisms of impact, we found that users who regularly practiced and who’s caregivers helped them by means of the errorless learning method learned to use FindMyApps easier than users who practiced less and who’s caregivers were less active in guiding them by using errorless learning.
This information is not only relevant for the outcome evaluation, but also to get insight into conditions for successful implementation of FindMyApps.
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Guidance
Ensure new technology is compatible with a range of relevant platforms to promote implementation.
Explanation and examples
Findings from the feasibility trial showed that people with dementia use a range of devices with various software versions (e.g. smartphones, touch-screen tablets, and personal computers) to access apps and other services. New technology which aims to be compatible with these different devices, can lead to increased uptake and may contribute to successful implementation.
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