Self-Management for Youth and Families Living With SCD - SMYLS
| Status: | Completed |
|---|---|
| Conditions: | Anemia |
| Therapuetic Areas: | Hematology |
| Healthy: | No |
| Age Range: | 8 - 17 |
| Updated: | 2/24/2019 |
| Start Date: | March 16, 2018 |
| End Date: | January 31, 2019 |
Self-Management for Youth and Families Living With Sickle Cell Disease - SMYLS
The purpose of this proposal is to integrate family-centered self-management strategies with
mobile health (mHealth) technology to improve reach, self-management behaviors, and child and
caregiver physical and psychosocial symptoms and quality of life. Specifically, the
investigators propose to conduct feasibility testing of SMYLS, which has been adapted based
on user feedback in the first phase of this study. First the investigators will work with the
Medical University of South Carolina (MUSC) Pediatric Sickle Cell Clinic to identify and
recruit families with children with sickle cell disease (SCD) in the community, statewide.
Next, the investigators will test the feasibility of the intervention with 30 dyads of
children ages 8 - 17 with sickle cell disease and their parent or primary caregiver, (N=60)
mobile health (mHealth) technology to improve reach, self-management behaviors, and child and
caregiver physical and psychosocial symptoms and quality of life. Specifically, the
investigators propose to conduct feasibility testing of SMYLS, which has been adapted based
on user feedback in the first phase of this study. First the investigators will work with the
Medical University of South Carolina (MUSC) Pediatric Sickle Cell Clinic to identify and
recruit families with children with sickle cell disease (SCD) in the community, statewide.
Next, the investigators will test the feasibility of the intervention with 30 dyads of
children ages 8 - 17 with sickle cell disease and their parent or primary caregiver, (N=60)
Inclusion Criteria:
- children ages 8 - 17 years and parent or primary caregiver 18 years or older
- child with sickle cell disease, as reported by clinician at MUSC Pediatric Sickle Cell
Clinic
Exclusion Criteria:
- Parent/caregiver or child with cognitive disability or delay that precludes ability to
participate
- Lack of wi-fi access
We found this trial at
1
site
171 Ashley Avenue
Charleston, South Carolina 29425
Charleston, South Carolina 29425
843-792-1414
Phone: 843-792-9379
Medical University of South Carolina The Medical University of South Carolina (MUSC) has grown from...
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