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

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