Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study

Abstract

Background Individuals with sickle cell disease (SCD) and their caregivers may benefit from technology-based resources to improve disease self-management. Objective This study explores the preferences regarding a mobile health (mHealth) app to facilitate self-management in adults with SCD and their caregivers living in urban and rural communities. Methods Five community listening sessions were conducted in 2 urban and rural communities among adults with SCD and their caregivers (N=43). Each session comprised 4 to 15 participants. Participants were asked questions on methods of finding information about SCD self-care, satisfaction with current methods for finding SCD management information, support for SCD management, important features for development of an mHealth app, and areas of benefit for using an mHealth app for SCD self-management. An inductive-deductive content analysis approach was implemented to identify the critical themes. Results Seven critical themes emerged, including the current methods for receiving self-management information, desired information, recommendations for communicating sickle cell self-management information, challenges of disease management, types of support received for disease management, barriers to and facilitators of using an mHealth app, and feature preferences for an mHealth app. In addition, we found that the participants were receptive to using mHealth apps in SCD self-management. Conclusions This study expands our knowledge on the use of mHealth technology to reduce information access barriers pertaining to SCD. The findings can be used to develop a patient-centered, user-friendly mHealth app to facilitate disease self-management, thus increasing access to resources for families of patients with SCD residing in rural communities.

The Use of Digital Technologies in the Promotion of Health Literacy and Empowerment of Informal Caregivers: Scoping Review

“…They describe which types of technological resources are used more frequently by them: smartphones with mobile apps or internet access. The internet is the source of choice for accessing health information and learning about self-management techniques, with the importance of reliable websites being emphasized [ 22 , 25 , 26 ]. Smartphones are used to make calls, send SMS text messages and emails, and access the internet [ 25 ].…”

“…Apps are used to manage the appointments and medical information of the person cared for and to access specific information that allows ICs to share and discuss to commit to the caregiving relationship [ 25 ]. The esthetic dimension, ease of configuration, and nice interface are app features that are valued by ICs [ 25 , 26 ].…”

“…Privacy and security issues seem to be a factor that limits the use of technologies because users feel insecure due to the risk of sharing personal information [ 19 , 27 ]. Struggling to identify relevant and reliable information is also a factor that causes apprehension when it comes to internet use [ 26 ]. The degree of trust when accessing digital information seems to be related to the HL level of users [ 29 ].…”

“…ICTs lower information access barriers and provide relevant information that is enabled when there is a need to gain new knowledge [ 21 , 26 ]. ICTs are perceived as giving ICs the opportunity to guide themselves and interact with other caregivers, which allows them to get to know their peers and feel less lonely [ 24 , 28 ].…”

“…The use of technology is also referred to as an intermediary for an improved quality of life [ 21 , 28 ]. This perception of the improvement of the quality of life is boosted when the technology that is used includes multiple resources, such as the fact that there is a public forum for community discussion with other ICs in the same region without having to leave home, a market to purchase and sell materials and equipment that is needed for providing care, and an alert system or information trackers [ 26 , 27 ]. The integration of the multiple resources that are needed by caregivers daily in an app that is easy to use allows them to save time and provide help to browse without problems [ 27 ].…”