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Table 3 Demographic and Clinical Characteristics of Parent Participants and Their Children (Phase 3)

From: Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

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%)