Table 1 Characteristics of caregivers and their children with sickle cell disease
Demographic Information | Round One Hybrid Interviews n = 6 | Round Two Hybrid Interviews n = 3 | Round Three Cognitive Debriefing Interviews n = 13 |
|---|---|---|---|
Caregiver’s gender | |||
 Male | 1 | 1 | 2 |
 Female | 5 | 2 | 11 |
Caregiver’s education | |||
 High school or equivalent | 0 | 1 | 4 |
 Some college | 0 | 2 | 0 |
 Associate’s degree | 1 | 0 | 2 |
 Bachelor’s degree | 3 | 0 | 2 |
 Post-graduate degree | 2 | 0 | 5 |
Caregiver’s relationship to the child | |||
 Parent | 4 | 3 | 11 |
 Grandparent | 1 | 0 | 1 |
 Cousin | 1 | 0 | 0 |
 Legal Guardian | 0 | 0 | 1 |
Region of residence | |||
 Northeast | 3 | 0 | 3 |
 Pacific | 0 | 0 | 2 |
 Southeast | 3 | 0 | 6 |
 Midwest | 0 | 3 | 2 |
Child’s gender | |||
 Male | 2 | 2 | 4 |
 Female | 4 | 1 | 9 |
Child’s age | |||
 Mean (SD) | 8.3 years (2.8) | 8.7 years (1.5) | 5.1 years (3.1) |
 Range | 3–11 years | 7–10 years | 11 months-11 years |
Child’s disease type | |||
 HbSS disease | 2 | 0 | 8 |
 HbSC disease | 2 | 3 | 3 |
 Don’t know/unsure | 2 | 0 | 2 |
# of SCPCs in the past 12Â months | |||
 Mean (SD) | 5.8 (4.2) | 18.3 (2.9) | 6 (5.9) |
 Range | 1–12 | 15–20 | 1–24 |
Frequency of healthcare use for SCPCs | |||
 Every time or almost every time | 5 | 3 | 10 |
 Sometimes but not all of the time | 1 | 0 | 3 |
 Treat at home/see regular doctor | 0 | 0 | 0 |