Table 1.
Demographic Characteristics
| Parent Interviews (n=25) | % (N) | M (SD) |
| Relationship to Patient | ||
| Mother | 80%(20) | |
| Father | 12% (3) | |
| Grandmother | 4% (1) | |
| Grandfather | 4% (1) | |
| Mothers Highest Level of Education | ||
| Graduate or professional degree | 24% (6) | |
| College Graduate | 24% (6) | |
| Some college or certification course | 32% (8) | |
| High school graduate | 8% (2) | |
| 9th– 12th grade or less | 12% (3) | |
| Fathers Highest Level of Education | ||
| Graduate or professional degree | 12% (3) | |
| College Graduate | 24% (6) | |
| Some college or certification course | 20% (5) | |
| High school graduate | 8% (2) | |
| 9th– 12th grade or less | 16% (4) | |
| 7th–9th grade or less | 4% (1) | |
| Unknown | 16% (4) | |
| Insurance | ||
| Private | 28% (7) | |
| Public | 52% (13) | |
| Unknown | 20% (5) | |
| Patient Age | 12.30 (3.49) | |
| Patient Gender | ||
| Female | 52% (13) | |
| Male | 48% (12) | |
| Patient Ethnicity | ||
| Black or African American | 100% (25) | |
| Patient SCD Genotype | ||
| HbSS | 84% (21) | |
| HbSC | 8% (2) | |
| HbS Beta 0 Thal | 4% (1) | |
| HbS Beta + Thal | 4% (1) | |
| Morisky Scale | Low adherence | |
| PedsQL Total Score | 75.74 (15.61) | |
| Provider Survey/ Interviews (n=28) | % (N) | M (SD) |
| Position | ||
| Physicians | 67.86% (19) | |
| Nurse Practitioners | 21.43% (6) | |
| Nurses | 7.14% (2) | |
| Psychologist | 3.57% (1) | |
| Practice Specialty | ||
| Pediatric Hematology | 78.57% (22) | |
| Adult Hematology | 10.71% (3) | |
| Primary Care Provider | 10.71% (3) | |
| Clinic Observations (n=5) | % (N) | M (SD) |
| Relationship to Patient | ||
| Mother | 80% (4) | |
| Father | 20% (1) | |
| Mothers Highest Level of Education | ||
| Graduate or professional degree | 20% (1) | |
| College Graduate | 20% (1) | |
| Some college or certification course | 40% (2) | |
| 9th– 12th grade or less | 20% (1) | |
| Fathers Highest Level of Education | ||
| Some college or certification course | 60% (3) | |
| High school graduate | 20% (1) | |
| 9th– 12th grade or less | 20% (1) | |
| Insurance | ||
| Private | 20% (1) | |
| Public | 80% (4) | |
| Patient Age | 6.89 (4.91) | |
| Patient Gender | ||
| Female | 60% (3) | |
| Male | 40% (2) | |
| Patient Ethnicity | ||
| Black or African American | 100% (5) | |
| Patient SCD Genotype | ||
| HbSS | 80% (4) | |
| HbSC | 20% (1) | |
| Parent Narratives (n=5) | % (N) | M (SD) |
| Relationship to Patient | ||
| Mother | 80% (4) | |
| Father | 20% (1) | |
| Mothers Highest Level of Education | ||
| Graduate or professional degree | 20% (1) | |
| College Graduate | 20% (1) | |
| Some college or certification course | 40% (2) | |
| High school graduate | 20% (1) | |
| Fathers Highest Level of Education | ||
| Graduate or professional degree | 40% (2) | |
| High school graduate | 40% (2) | |
| 9th–12th grade or less | 20% (1) | |
| Insurance | ||
| Private | 40% (2) | |
| Public | 40% (2) | |
| Unknown | 20% (1) | |
| Patient Age | 8.39 (5.91) | |
| Patient Gender | ||
| Female | 60% (3) | |
| Males | 40% (2) | |
| Patient Ethnicity | ||
| Black or African American | 100% (5) | |
| Patient SCD Genotype | ||
| HbSS | 100% (5) | |
| Intervention Group (n=27) | % (N) | M (SD) |
| Relationship to Patient | ||
| Mother | 74.10% (20) | |
| Father | 18.50% (5) | |
| Grandmother | 3.70% (1) | |
| Other | 3.70% (1) | |
| Mothers Highest Level of Education | ||
| College Graduate | 29.63% (8) | |
| Some college or certification course | 25.92% (7) | |
| High school graduate | 18.52% (5) | |
| 9th– 12th grade or less | 18.52% (5) | |
| Unknown | 7.41% (2) | |
| Fathers Highest Level of Education | ||
| Graduate or professional degree | 7.41% (2) | |
| College Graduate | 11.11% (3) | |
| Some college or certification course | 25.92% (7) | |
| High school graduate | 29.63% (8) | |
| 9th– 12th grade or less | 14.81% (4) | |
| Unknown | 11.11% (3) | |
| Insurance | ||
| Private | 14.81% (4) | |
| Public | 85.19% (23) | |
| Patient Age | 4.06 (4.60) | |
| Patient Gender | ||
| Female | 74.10% (20) | |
| Male | 25.90% (7) | |
| Patient Ethnicity | ||
| Black or African American | 100% (27) | |
| Patient SCD Genotype | ||
| HbSS | 96.29% (26) | |
| Sickle Cell Trait | 3.70% (1) | |
| Control Group (n=20) | % (N) | M (SD) |
| Relationship to Patient | ||
| Mother | 65% (13) | |
| Father | 15% (3) | |
| Grandmother | 5% (1) | |
| Guardian | 10% (2) | |
| Self | 5% (1) | |
| Mothers Highest Level of Education | ||
| College graduate | 40% (8) | |
| Some college or certification course | 25% (5) | |
| High school graduate | 5% (1) | |
| 9th–12th grade or less | 10% (2) | |
| Unknown | 20% (4) | |
| Fathers Highest Level of Education | ||
| Graduate or professional degree | 10% (2) | |
| College graduate | 15% (3) | |
| Some college or certification course | 10% (2) | |
| High school graduate | 25% (5) | |
| 9th–12th grade or less | 25% (5) | |
| Unknown | 15% (3) | |
| Insurance | ||
| Private | 30% (6) | |
| Public | 70% (14) | |
| Patient Age | 6.53 (5.44) | |
| Patient Gender | ||
| Female | 60% (12) | |
| Male | 40% (8) | |
| Patient Ethnicity | ||
| Black or African American | 75% (15) | |
| Hispanic | 10% (2) | |
| Multi-Racial | 15% (3) | |
| Patient SCD Genotype | ||
| HbSS | 95% (19) | |
| HbS Beta 0 Thal | 5% (1) | |
| Acceptability (n=11) | % (N) | M (SD) |
| Clear information | 90.9% (10) | |
| Right amount of information | 100% (11) | |
| Helpful information about side effects/risks | 90.9% (10) | |
| Helpful information about evidence of benefits | 90.9% (10) | |
| Useful when deciding | 100% (11) | |
| Balanced | 81.8% (9) | |