Table 2.
Demographic and Clinical Characteristics of Parents and Children
| n (%) | |
|---|---|
| Parents’ Characteristics (n = 47) | |
| Parent type | |
| Mother | 44 (93.6) |
| Father | 3 (6.4) |
| Age | |
| Mean/SD | 42.6 (8.5) |
| Race | |
| White | 42 (89.4) |
| Black or African American | 1 (2.1) |
| More than one race/other | 3 (6.4) |
| Prefer not to answer | 1 (2.1) |
| Ethnicity | |
| Non-Hispanic | 43 (91.5) |
| Hispanic | 3 (6.4) |
| Prefer not to answer | 1 (2.1) |
| Religious preference | |
| Christian (Protestant, Catholic, Mormon, etc.) | 31 (66.0) |
| Jewish | 6 (12.8) |
| Muslim | 0 |
| Buddhist | 1 (2.1) |
| Hindu | 1 (2.1) |
| Atheist | 3 (6.4) |
| Agnostic | 2 (4.3) |
| Prefer not to answer | 3 (6.4) |
| Highest education level completed | |
| Grade school | 1 (2.1) |
| High school/general educational development | 2 (4.3) |
| Trade/technical/vocational | 4 (8.5) |
| Associates/professional | 8 (17.0) |
| College | 19 (40.4) |
| Graduate school | 13 (27.7) |
| Relationship status | |
| Married/partnered | 41 (87.2) |
| Separated/divorced/widowed | 6 (12.8) |
| Number of other children | |
| 0 | 11 (23.4) |
| 1–3 | 35 (74.5) |
| 4 or more | 1 (2.1) |
| Employment status | |
| Full time | 23 (48.9) |
| Part time | 5 (10.6) |
| Not employed outside the home | 17 (36.2) |
| Prefer not to answer | 2 (4.3) |
| Bereavement status | |
| Bereaved | 14 (29.8) |
| Currently caring for child at home | 33 (70.2) |
| Affiliation | |
| CHOP | 16 (34.0) |
| CPN | 31 (66.0) |
| Children’s Characteristics (n = 45) | |
| Age (yrs) | |
| One or less | 8 (17.8) |
| 2–4 | 9 (20.0) |
| 5–9 | 5 (11.1) |
| 10–18 | 17 (37.8) |
| 19–25 | 6 (13.3) |
| Gender | |
| Female | 21 (46.7) |
| Male | 24 (53.3) |
| Race | |
| White | 37 (82.2) |
| Black or African American | 2 (4.4) |
| More than one race/other | 5 (11.1) |
| Prefer not to answer | 1 (2.2) |
| Ethnicity | |
| Non-Hispanic | 39 (86.7) |
| Hispanic | 4 (8.9) |
| Prefer not to answer | 2 (4.4) |
| Primary complex chronic condition (Note: not mutually exclusive; thus, the percent does not sum to 100%) | |
| Cardiovascular | 10 (22.2) |
| Gastrointestinal | 4 (8.9) |
| Genetic or congenital | 22 (48.9) |
| Hematologic or immunologic | 4 (8.9) |
| Malignancy | 5 (11.1) |
| Metabolic | 10 (22.2) |
| Neuromuscular, neurologic, or mitochondrial | 23 (51.1) |
| Respiratory | 6 (13.3) |
| Other/unknown | 1 (2.2) |
| Primary care team (hospice v. palliative care) | |
| Hospice | 19 (42.2) |
| Palliative care | 24 (53.3) |
| Unknown/not sure | 2 (4.4) |
| Length of time receiving home-based palliative or hospice care | |
| Less than one month | 5 (11.1) |
| One to three months | 5 (11.1) |
| Four to six months | 7 (15.6) |
| Seven to 12 months | 5 (11.1) |
| One to two years | 8 (17.8) |
| More than two years | 15 (33.3) |
CHOP = Children’s Hospital of Philadelphia; CPN = Courageous Parents Network.
Note: Unless otherwise noted, cell entries are percentages. Percentages are within each demographic or clinical characteristic variable.