Table 3 Demographic and Clinical Characteristics of Parent Participants and Their Children (Phase 3)
| Parents’ Characteristics (n = 47) | No. (%) | |
|---|---|---|
| Parent type | Mother | 44 (93.6%) |
| Father | 3 (6.4%) | |
| Age (at time of study or at time of death) | 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%) | |
| 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 of 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) | No. (%) | |
| Age | 1 year or less | 8 (17.8%) |
| 2–4 years | 9 (20.0%) | |
| 5–9 years | 5 (11.1%) | |
| 10–18 years | 17 (37.8%) | |
| 19–25 years | 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 % 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 1 month | 5 (11.1%) |
| 1 to 3 months | 5 (11.1%) | |
| 4 to 6 months | 7 (15.6%) | |
| 7 to 12 months | 5 (11.1%) | |
| 1 to 2 years | 8 (17.8%) | |
| More than 2 years | 15 (33.3%) | |