Table 1.

Demographic and Clinical Characteristics of Children and Parents at Baseline

	N (%)
Children's characteristics (n = 158)
Age
1 Year or less	107 (67.7)
2–4 Years	19 (12.0)
5–9 Years	11 (7.0)
10–18 Years	21 (13.3)
Gender
Female	73 (46.2)
Male	85 (53.8)
Race
White	118 (74.7)
African American	20 (12.6)
More than one race/other	17 (10.8)
Missing	3 (1.9)
Ethnicity
Non-Hispanic	137 (86.7)
Hispanic	19 (12.0)
Missing	2 (1.3)
Primary complex chronic condition (Note: not mutually exclusive; thus, the % does not sum to 100%)
Cardiovascular	77 (48.7)
Respiratory	89 (56.3)
Congenital or genetic	111 (70.3)
Neuromuscular	63 (39.9)
Metabolic	17 (10.8)
Malignancy	15 (9.5)
Renal	16 (10.1)
Other	53 (33.5)
Parents' characteristics (n = 200)
Parent type
Mother	136 (68)
Father	60 (30)
Other	4 (2)
Age
Mean/SD	33.7 (7.92)
Missing	1
Race
White	161 (80.5)
African American	22 (11.0)
More than one race/other	15 (7.5)
Missing	2 (1.0)
Ethnicity
Non-Hispanic	180 (90)
Hispanic	17 (8.5)
Missing	3 (1.5)
Highest education level completed
High school/general educational development	33 (16.5)
Trade/technical/vocational	8 (4.0)
College/graduate school	159 (79.5)
Relationship status
Married/partnered	171 (85.5)
Separated/divorced/widowed	6 (3.0)
Single	23 (11.5)
No. of other children
0	66 (33.0)
1–4	123 (61.5)
5+	10 (5.0)
Missing	1 (0.5)
Employment status
Full-time	99 (49.5)
Part-time	23 (11.5)
Not employed/looking for employment	34 (17.0)
Homemaker	42 (21.0)
Retired	2 (1.0)

Unless otherwise noted, cell entries are percentages. Percentages are within each demographic or clinical characteristic variable, and include missing data if present.

SD, standard deviation.