Table 1.
Demographics
| Rare and Undiagnosed Diseases (Child n = 63) (Caregiver n = 101) |
Typically Developing (Child n = 59) (Caregiver n = 69) |
Total (Child n = 122) (Caregiver n = 170) |
|
|---|---|---|---|
| Caregiver Gender (n, %) | |||
| Woman | 57 (56.4%) | 46 (66.7%) | 103 (60.6%) |
| Man | 44 (43.6%) | 23 (33.3%) | 67 (39.4%) |
| Care Recipient Gender (n, %)* | |||
| Girl | 20 (31.7%) | 35 (59.3%) | 55 (45.1%) |
| Boy | 43 (68.3%) | 24 (40.7%) | 67 (54.9%) |
| Caregiver Age (Mean, SD)* | 38.30 (6.06) | 40.40 (7.34) | 39.1 (6.86) |
| Care Recipient Age (Mean, SD) | 7.33 (4.48) | 7.83 (4.46) | 7.57 (4.46) |
| Education (n, %)* | |||
| Less Than HS | 4 (4.0%) | 1 (1.4%) | 5 (2.9%) |
| HS Diploma/GED/Technical | 16 (15.8%) | 4 (5.8%) | 20 (11.8%) |
| Some College | 23 (22.8%) | 9 (13.0%) | 32 (18.8%) |
| Bachelor’s Degree | 39 (38.6%) | 19 (27.5%) | 58 (34.1%) |
| Post-Grad Degree | 18 (17.8%) | 36 (52.2%) | 54 (31.8%) |
| Missing | 1 (1.0%) | 0 (0%) | 1 (0.6%) |
| Marital Status (n, %) | |||
| Married/Cohabitating | 91 (90.1%) | 56 (81.2%) | 147 (86.5%) |
| Not Married | 8 (7.9%) | 13 (18.8%) | 21 (12.4%) |
| Missing | (2.0%) | 0 (0%) | 2 (1.2%) |
| Relationship to CR (n, %) | |||
| Father | 43 (42.6%) | 22 (31.9%) | 65 (38.2%) |
| Mother | 56 (55.4%) | 44 (63.8%) | 100 (58.8%) |
| Step-father | 1 (1.0%) | 0 (0%) | 1 (0.6%) |
| Step-mother | 1 (1.0%) | 2 (2.9%) | 3 (1.8%) |
| Grandparent | 0 (0%) | 1 (1.4%) | 1 (0.6%) |
| Caregiver Race/Ethnicity (n, %)* | |||
| Asian | 4 (4.0%) | 9 (13.0%) | 13 (7.6%) |
| Black or African American | 1 (1.0%) | 11 (15.9%) | 12 (7.1%) |
| Native Hawaiian/Pacific Islander | 0 (0%) | 1 (1.4%) | 1 (0.6%) |
| Other | 8 (7.9%) | 6 (8.7%) | 14 (8.2%) |
| White | 87 (86.1%) | 41 (59.4%) | 128 (75.3%) |
| Missing | 1 (1.0%) | 1 (1.4%) | 2 (1.2%) |
| Perceived Stress* | 17.57 (7.11) | 14.68 (7.39) | 16.40 (7.34) |
| Coping Style | |||
| Proactive Coping* | 2.63 (.52) | 2.32 (.82) | 2.50 (.67) |
| Avoidant Coping | 1.73 (.48) | 1.62 (.55) | 1.69 (.51) |
| Support Coping | 2.28 (.75) | 2.26 (.83) | 2.28 (.78) |
| Physical Health | |||
| CRP | 7.02 (1.57) | 7.25 (1.36) | 7.11 (1.49) |
| TNFa | 2.79 (.97) | 2.70 (.94) | 2.76 (.96) |
| AVP | 8.08 (.49) | 7.97 (.58) | 8.03 (.53) |
| Self-Rated Health | 82.12 (18.02) | 84.27 (16.69) | 82.99 (17.47) |
Note:
*
indicates a difference between rare disease caregivers and caregivers of typically developing children