SCDAA 46th Annual National Convention

Abstract

Authors:
Dr. Tilicia Mayo-Gamble- Georgia Southern University, Dr. Velma McBride Murry- Vanderbilt University, Ms. Alexis Gorden- Sickle Cell Foundation of Tennessee, Ms. Delores Quasie-Woode- Georgia Southern University
 
Objective: Sickle cell disease (SCD) is a chronic disease that affects over 100,000 individuals in the United States, of whom many are from underserved communities with limited access to disease management resources. The purpose of this study was to determine access to resources in the form of technology and preferences for self-care management and social support in adults with SCD and their caregivers residing in urban and rural communities.
Methods: Community Health Ambassadors led community listening sessions (n=4) with adults with SCD and their caregivers (n=43) in two urban and two rural communities throughout Tennessee. Community listening sessions are a qualitative method of obtaining feedback that allows individuals to express their views on an issue in a more wide-ranging manner. 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 smartphone application (app) SCD; and (5) areas of benefit for using a smartphone app for SCD self-care. Content analysis identified emerging themes.
Results: Five critical themes emerged: (1) desired information; (2) types of support for SCD self-care; (3) recommendations for disseminating information to the sickle cell community; (4) barriers and facilitators to using an app; and (5) desirable features for a SCD mobile app. All participants had a smartphone but most did not have an iphone. Most participants would prefer to receive regular emails on SCD management from a credible source. Participants also expressed a range of comfort levels with using a mobile app but were open to trying an app for SCD self -care and SCD social support.
 Conclusions: Through our discussions we learned more about how to reduce barriers to accessing information by offering a technology platform based on patient and caregiver preferences. Findings can be used to develop a patient-centered, user-friendly smartphone application to facilitate disease self-management among individuals with SCD and their caregivers; thus, increasing access to resources for families residing in rural communities.