Table 1.
Participant characteristics
| Characteristic | Entire cohort N (%) | Phase 1 N (%) | Phase 2 N (%) |
|---|---|---|---|
| PARENTS (Phases 1 and 2) | 32 (100) | 12 (100) | 20 (100) |
| Child’s diagnosis | |||
| Leukemia | 23 (72) | 6 (50) | 17 (85) |
| Lymphoma | 3 (9) | 3 (25) | 3 (15) |
| Solid/central nervous system tumor | 6 (19) | 3 (25) | 0 (0) |
| Time since child’s diagnosis (months) | |||
| Mean ± Standard Deviation (SD) | 16 ± 9 | 25 ± 4 | 11 ± 7 |
| Median (range) | 14 (2–32) | 25 (20–32) | 10 (2–30) |
| Child currently receiving treatment? | |||
| Yes | 27 (84) | 7 (58) | 20 (100) |
| No | 5 (16) | 5 (42) | 0 (0) |
| Parent age group (years) | |||
| <30 | 5 (16) | 1 (8) | 4 (20) |
| 30 to <40 | 14 (44) | 2 (17) | 12 (60) |
| 40 to <50 | 10 (31) | 7 (58) | 3 (15) |
| 50 to <60 | 3 (9) | 2 (17) | 1 (5) |
| Parent sex | |||
| Female | 26 (81) | 10 (83) | 16 (80) |
| Male | 6 (19) | 2 (17) | 4 (20) |
| Parent relationship to patient | |||
| Mother | 25 (78) | 9 (75) | 16 (80) |
| Father | 5 (16) | 1 (8) | 4 (20) |
| Other | 2 (6) | 2 (17) | 0 (0) |
| Parent race/ethnicity | |||
| Non-Hispanic white | 28 (88) | 11 (92) | 17 (85) |
| Non-Hispanic black | 4 (13) | 1 (8) | 3 (15) |
| Hispanic/other | 0 (0) | 0 (0) | 0 (0) |
| Parent educational level | |||
| High school diploma or equivalent | 3 (9) | 2 (17) | 1 (5) |
| Some college or post-high school trade school | 12 (38) | 3 (25) | 9 (45) |
| 2-year college degree | 4 (13) | 3 (25) | 1 (5) |
| 4-year college degree | 5 (16) | 2 (17) | 3 (15) |
| Graduate/professional degree | 8 (25) | 2 (17) | 6 (30) |
| Parent health literacy | |||
| Adequate | 32 (100) | 12 (100) | 20 (100) |
| Marginal/limited | 0 (0) | 0 (0) | 0 (0) |
| Household income | |||
| < $30K | 5 (16) | 2 (17) | 3 (15) |
| $30K-$74K | 11 (34) | 5 (42) | 6 (30) |
| $75K or higher | 16 (50) | 5 (42) | 11 (55) |
| CLINICIANS (Phase 1 only) | 17 (100) | 17 (100) | -- |
| Role | -- | ||
| Physician | 4 (24) | 4 (24) | -- |
| Nurse practitioner | 4 (24) | 4 (24) | -- |
| Nurse | 6 (35) | 6 (35) | -- |
| Psychosocial team member | 3 (18) | 3 (18) | -- |
| Age group (years) | -- | ||
| <30 | 5 (29) | 5 (29) | -- |
| 30 to <40 | 6 (35) | 6 (35) | -- |
| 40 to <50 | 3 (18) | 3 (18) | -- |
| 50 to <60 | 2 (12) | 2 (12) | -- |
| 60 or older | 1 (6) | 1 (6) | -- |
| Sex | -- | ||
| Female | 13 (77) | 13 (77) | -- |
| Male | 4 (24) | 4 (24) | -- |
| Race/ethnicity | -- | ||
| Non-Hispanic white | 15 (88) | 15 (88) | -- |
| Non-Hispanic black | 0 (0) | 0 (0) | -- |
| Asian | 1 (6) | 1 (6) | -- |
| Hispanic | 1 (6) | 1 (6) | -- |
| Educational level | -- | ||
| High school diploma or equivalent | 0 (0) | 0 (0) | -- |
| Some college or post-high school trade school | 0 (0) | 0 (0) | -- |
| 2-year college degree | 2 (12) | 2 (12) | -- |
| 4-year college degree | 5 (29) | 5 (29) | -- |
| Graduate/professional degree | 10 (59) | 10 (59) | -- |