1. 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 P20NR PI contact information: