A Family-Centered Self-Management Program for Children with Sickle Cell Disease Shannon Phillips, PhD, RN College of Nursing, Medical University of South Carolina, Charleston SC PURPOSE Healthcare providers (n = 10) Years of SCD pediatric experience Mean 12 years; range 6 months – 30 years Profession 3 nurses, 2 NPs, 2 MDs, 1 PA, 1 psychologist, 1 social worker Gender 9 female, 1 male Race/Ethnicity 8 White, 2 Black, 1 Hispanic/Latino Parents/Caregivers and Children (n = 27 dyads) Parent/Caregiver age Mean 38 years; range 18 – 67 years Child age Mean 9 years; range 1.8 – 16 years Parent gender 25 female, 2 male Child gender 14 female, 13 male Race/ethnicity 27 Black, non-Hispanic Relationship to child 22 mother, 3 grandmother, 1 father, 1 stepfather Type SCD 8 HbSS, 7 HbSC, 3 Sickle B+ Thal, 2 Sickle B thal, 7 unknown Insurance 21 Medicaid or First Choice, 2 private, 1 other, 3 not reported Problem: Sickle cell disease (SCD) affects ~100,000 individuals in the U.S. SCD results in multiple acute and chronic negative health outcomes, including organ damage, increased hospital admissions, ED visits, and burdensome symptoms such as pain and fatigue. An mHealth self-management strategy intervention (SMYLS) was developed to improve access to health information, symptom monitoring and tracking, and patient-provider communication to improve symptoms and quality of life. Aim: Pretest feasibility and refine the multicomponent SMYLS intervention using data from key informant interviews. SMYLS intervention (Figure 1): Designed to facilitate development of self-management behaviors and improve symptoms such as pain and fatigue Includes electronic educational materials, web-based app for symptom monitoring and tracking, SMS communication with provider delivered via smartphone Participants: 10 Healthcare providers (HCP) with expertise in SCD 27 dyads of parent/primary caregiver and child up to age 18 with SCD Recruited via MUSC Lifespan Comprehensive Sickle Cell Center Qualitative descriptive interviews to obtain participant perceptions of intervention usability Interviews took ~1 hour, audio recorded, and transcribed Deductive-inductive analysis conducted Table 1. Sample demographics Participant suggestion Intervention revision Too much text in education section Text condensed to bullet points with accordions for improving visual appeal Typing information in health history challenging and tedious Drop-down selections added with limited free-text options Option for keeping track of medications would be helpful Medication calendar and tracker added Pain descriptors difficult to understand Descriptors revised using terminology suggested by participants Graph for tracking pain confusing Format revised and added ability for users to click on data point to see text about the entry Figure 1. Intervention components RESULTS / ACHEIVEMENTS Common themes: The intervention was interesting and visually appealing Participants demonstrated or described the ease of navigation The intervention content was helpful toward everyday management of SCD Participants believed the intervention provided useful tools for tracking day-to-day management of SCD Dyads believed the intervention would facilitate communication with other caregivers and providers Dyads with children 8 years or older described the intervention as a useful tool for assisting with child/adolescent transition to self-care Dyads reported they would use the intervention daily or at least regularly Detailed matrix of results created to inform refinement of each intervention component (Table 2) METHODS Table 2. Example of results and intervention refinements CONCLUSION The multi-component SMYLS intervention was a feasible and acceptable approach and has potential for improving self-management and reducing symptoms such as pain and fatigue in a population of children with SCD and their parents/caregivers NEXT STEPS Results informed revisions to the intervention, completed by study technology teams Enrolling for phase II of the study that aims to assess feasibility in real-life setting over a 12-week period with 60 parent/child dyads This project is supported by the National Institutes of Health, National Institute of Nursing Research of the (NIH/NINR) award number P20NR016575. PI contact information: phillipss@musc.edu