Accepted for/Published in: JMIR Human Factors
Date Submitted: Nov 28, 2022
Date Accepted: Jun 7, 2023
Bridging the communication gap between people with cognitive impairments and their caregivers using mHealth applications: a case study with people with 22q11 DS
ABSTRACT
Background:
In families with children with cognitive impairments, both parents and children experience tension and have questions because of a lack of communication and adequate information. Therefore, there is a great need to develop tools that can help bridge the communication gap between patient and caregiver by stimulating conversations and providing psycho-educational tools. mHealth applications show great potential in this context.
Objective:
The objective of this research is to discover the specific ways young persons with cognitive impairments and their families interact with mHealth applications in the context of bridging the communication gap. This newly discovered information leads to potentially more impactful mHealth interventions in the future. Therefore, this paper documents the design and development of a mHealth application for a specific group of people with cognitive impairments - people with 22q11 DS - and their caregivers and key learnings from the evaluation of this application.
Methods:
An iterative, user-centered design approach is used to design and develop the application. Design and evaluation happen in two phases. During the design phase, feedback is gathered from two medical experts and three HCI-experts using a low-fidelity paper prototype. During the evaluation phase, feedback is gathered from eight families with a child with 22q11 DS using a fully working proof of concept. This phase consists out of a semi-structured interview, a 2–4-week trial period, and a concluding semi-structured interview.
Results:
The evaluation of the fully working proof of concept leads to results related to four different topics: (1) Overcoming usage barriers, (2) Stimulating conversation through a mHealth application, (3) Providing information and (4) Bringing continual added value. Results are presented according to six different categories obtained in a thematic analysis.
Conclusions:
In this research, the need for applications that help bridge the communication gap between person with cognitive impairment and caregiver is confirmed. All participating families express their gratitude and mention the added value for other families. Therefore, it is highly encouraged for clinics and institutions to take action and develop an application to be used in practice. Furthermore, considerations when developing for people with 22q11 DS, or more broadly people with cognitive impairments, are proposed. First, one should keep design principles in mind to overcome usage barriers. Next, recognition is a key concept when stimulating conversations through mobile application. Third, information should be provided by a trusted source, and more than only clinical information can be considered valuable. Finally, having the possibility of using a digital tool that can be personalized brings continual added value.
Citation
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Copyright
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