JMIR Publications

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 explored access to technology resources and preferences for a mobile health (mHealth) application to facilitate self-management in adults with SCD and caregivers living in urban and rural communities.

Methods:

Five community listening sessions were conducted with adults with SCD and their caregivers (N=43) in two urban and two rural communities. Sessions ranged from 9 to 15 participants, respectively. Participants were asked questions on: (1) methods of finding information about SCD self-care; (2) satisfaction with current methods for finding SCD management information; (3) support for SCD management; 4) important features for development of a mHealth application; and (5) areas of benefit for using a mHealth application for SCD self-management. An inductive-deductive, content analysis approach was implemented to identify critical themes.

Results:

Seven critical themes emerged: (1) current methods for receiving self-management information; (2) desired information; (3) recommendations for communicating sickle cell self-management information; (4) challenges of disease management; (5) types of support received for disease management; (6) barriers and facilitators to using a mHealth application; and (7) feature preferences for a mobile health application. Additionally, participants were receptive to an mHealth application for SCD self-management.

Conclusions:

This study expanded our knowledge on using mHealth technology to reduce SCD information access barriers. Findings can be used to develop a patient-centered, user-friendly mHealth application to facilitate disease self-management; thus, increasing access to resources for SCD families residing in rural communities.