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

Self Management for Families and Youth: Phase I

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.

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.

Inclusion Criteria:

• Children ages 8-17 years and their primary caregiver
• Child with SCD as indicated by self/parent report or report from MUSC Pediatric Sickle Cell clinic staff
• Child has been seen at the MUSC Pediatric Sickle Cell clinic for at least 6 months
• MUSC Pediatric Sickle Cell clinic staff report preventive recommendations are followed by child/caregiver

Health care providers:

• Age 18 years or older
• Healthcare professional with at least 6 months' experience caring for children with SCD

Exclusion Criteria:

• Non-English speaking
• Inability or unwillingness to participate in a one-on-one interview
• Inability or unwillingness of parent/caregiver or health care provider to give informed consent and of child to give assent