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A Self-Management Intervention for Youth With Sickle Cell Disease and Their Families: Phase I

Anemia, Sickle Cell Clinical Trial

Official title:
Self Management for Families and Youth: Phase I

Clinical Trial Summary

This study is being conducted to test an intervention for children and adolescents ages 8-17 years with sickle cell disease and their families. In the first phase of this study, key informant interviews are being conducted with health care providers and children ages 8-17 with sickle cell disease and their primary caregivers. Participants are asked to review the intervention and provide feedback that will inform revision to the intervention.

Clinical Trial Description

Key informant, semi-structured interviews are conducted using an interview guide to obtain expert provider (healthcare providers of children with SCD) and end-user (children and parents/caregivers) feedback on the intervention. Interview questions are designed to solicit information on advantages and disadvantages, perceived usefulness, and recommendations for improvement on the intervention. The interviews will last approximately 1 hour and are audio recorded. Recordings are transcribed for analysis. Data are analyzed using a deductive-inductive approach with the intervention as a framework for initial categories. Findings will inform revisions to the intervention. Feasibility testing of the revised intervention will be conducted in the next phase of the study. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT03069430
Study type Observational
Source Medical University of South Carolina
Contact
Status Completed
Phase
Start date August 1, 2016
Completion date March 31, 2017
View Details
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