Table 1.
Characteristics of parents who participated in interviews and their children
| Characteristics | Group AParents whose child was currently receiving palliative care (9 cases) | Group BBereaved parents whose child had received palliative care (9 cases) |
|---|---|---|
| Children's characteristics | ||
| Age group (yrs)a | ||
| 0‐1 | 1 | 1 |
| 1‐4 | 1 | 1 |
| 4‐12 | 3 | 3 |
| 12‐17 | 4 | 4 |
| Sex | ||
| Female | 5 | 4 |
| Male | 4 | 5 |
| Diagnostic group b | ||
| Neurology | 6 | 4 |
| Gastroenterology | 1 | 0 |
| Metabolic | 1 | 1 |
| Chromosomal abnormality | 1 | 0 |
| Oncology | 0 | 2 |
| Immunology | 0 | 1 |
| Respiratory | 0 | 1 |
| Interview characteristics | ||
| Interview participants | ||
| Mother | 7 | 6 |
| Father | 0 | 2 |
| Mother and father | 2c | 1 |
| Number of interviews with researcher | ||
| 1 | 4 | 2 |
| 2 | 4 | 7 |
| 3 | 1 | 0 |
| Length of interview in minutes, median (range) | ||
| Per meeting with the researcher | 95 (19‐120) | 63 (30‐168) |
| Total length | 195 (19‐237) | 105 (30‐315) |
| Interview location | ||
| Home | 5d | 6 |
| Tertiary hospital | 2 | 2 |
| Hospice | 2d | 0 |
| Telephone | 0 | 1 |
a
For children in Group A, the age at the time of the interview is presented, whereas for children in Group B, the age at death is presented
b
For purposes of confidentiality, the diseases affecting the children and young people are described according to the main International Classification of Diseases, 10th Edition (ICD‐10) 37 rather than by specific name of the disease or condition.
c
One interview was conducted with a father and a stepmother.
d
For one family, the first meeting with the researcher was in a hospice, while the second meeting took place at the family's home.