Table 1.
Participant characteristics.
| Children (n = 26) | N or mean (range) | Parent/carers (n = 40) | N or mean (range) | Siblings (n = 13) | N or mean (range) |
|---|---|---|---|---|---|
| Age (years) | 12 (5–17) | Age (years) | 40 (21–65) | Age (years) | 9 (5–15) |
| Age of child with life-limiting condition (years) | 12 (0–17) | Age of child with life-limiting condition (years) | 10 (3–16) | ||
| Gender | 17:9 | Gender | Gender | ||
| Female:male | Female:male | 30:10 | Female:male | 7:6 | |
| Relationship to child | Relationship to child | ||||
| Mother | 29 | Sister | 7 | ||
| Father | 10 | Brother | 6 | ||
| Sibling caregiver | 1 | ||||
| Diagnosis | Diagnosis of child | Diagnosis of child | |||
| Cancer | 6 | Infectious disease | 2 | Metabolic | 1 |
| Metabolic | 1 | Cancer | 6 | Neurological | 7 |
| Neurological | 5 | Metabolic | 9 | Gastrointestinal | 2 |
| Respiratory | 1 | Neurological | 10 | Congenital | 3 |
| Gastrointestinal | 10 | Gastrointestinal | 4 | ||
| Congenital | 3 | Genitourinary | 1 | ||
| Perinatal | 1 | ||||
| Congenital | 7 | ||||
| Health and social care professionals (n = 15) | N or mean (range) | Commissioners (n = 12) | N or mean (range) | ||
| Gender | Gender | ||||
| Female:Male | 14:1 | Female:Male | 11:1 | ||
| Profession | Geographical location | ||||
| Palliative care nurse specialists | 4 | Southeast England | 4 | ||
| Children’s Community nurse | 1 | Greater London | 1 | ||
| Hospice nurse | 1 | East England | 2 | ||
| Ward sister | 1 | Northwest England | 1 | ||
| Paediatric palliative medicine consultant | 1 | Yorkshire and Humber | 4 | ||
| Haematology consultant | 1 | ||||
| General Paediatrician | 1 | ||||
| Social worker | 1 | ||||
| Chaplain | 1 | ||||
| Psychologist | 1 | ||||
| Play specialist | 1 | ||||
| Physiotherapist | 1 | ||||