Table 2.
Parent and child characteristics of parents (n = 17), ill children (n = 15) and families (n = 14)
| Number (N) | Percentages (%) | |
|---|---|---|
| Parent gender | ||
| Male | 3 | 18 |
| Female | 14 | 82 |
| Age parent | ||
| 30–39 | 6 | 35 |
| 40–49 | 7 | 41 |
| > 50 | 4 | 24 |
| Country of residence | ||
| United Kingdom (England, Wales, Scotland or Northern Ireland) | 9 | 52 |
| Republic of Ireland | 8 | 47 |
| Work status | ||
| Full time | 11 | 65 |
| Part time | 3 | 18 |
| Stay at home parent, special leave, sick leave | 3 | 18 |
| Ethnicity | ||
| White British | 6 | 35 |
| White Irish | 7 | 41 |
| White other | 2 | 12 |
| Black Caribbean | 2 | 12 |
| Religious affiliation | ||
| No religion | 6 | 35 |
| Atheist | 1 | 6 |
| Protestant | 1 | 6 |
| Catholic | 4 | 24 |
| Other Christian | 4 | 24 |
| Other religion or belief system | 1 | 6 |
| Partnership status at time of pACP initiation | ||
| Married/cohabiting | 17 | 100 |
| Current partnership status | ||
| Married/cohabiting | 17 | 100 |
| In a relationship with child’s other parent at time of pACP discussion | ||
| Yes | 14 | 82 |
| No | 3 | 18 |
| In a relationship with child’s other parent now | ||
| Yes | 14 | 82 |
| No | 3 | 18 |
| Highest level of education | ||
| Secondary school | 3 | 18 |
| Trade/vocational | 1 | 6 |
| Graduate degree | 8 | 47 |
| Post graduate degree | 5 | 29 |
| Child diagnosis (n = 15) | ||
| Brain tumour | 4 | 27 |
| DMD | 2 | 13 |
| Rare genetic | 3 | 20 |
| Epileptic syndrome | 1 | 7 |
| Genetic progressive neurological | 1 | 7 |
| Batten disease | 1 | 7 |
| Trisomy | 2 | 13 |
| Mucopolysaccharide (MPS) diseases | 1 | 7 |
| Child age at diagnosis (n = 15) | ||
| Antenatal | 2 | 13 |
| 0–11 months | 6 | 40 |
| 1–5 years | 5 | 43 |
| 6–12 | 1 | 7 |
| 13–18 | 1 | 7 |
| Age child at initiation discussion (n = 15) | ||
| Antenatal | 2 | 13 |
| 0–11 months | 3 | 20 |
| 1–5 years | 2 | 13 |
| 6–12 | 4 | 27 |
| 13–18 | 4 | 27 |
| Child gender | ||
| Female | 6 | 40 |
| Male | 9 | 60 |
| Child current age | ||
| Deceased | 11 | 73 |
| 1–5 years | 1 | 7 |
| 6–12 | 1 | 7 |
| 13–18 | 2 | 13 |
| Age child died (n = 11) | ||
| 0–11 months | 3 | 27 |
| 1–5 years | 3 | 27 |
| 6–12 | 1 | 9 |
| 13–18 | 2 | 18 |
| ≥ 18 | 2 | 18 |
| Time between death and interview (n = 11) | ||
| 6–11 months | 1* | 9 |
| Over 1 year but less than 2 | 2 | 18 |
| Over 2 years but less than 3 | 1 | 9 |
| Over 3 years but less than 4 | 2** | 18 |
| Over 4 years but less than 5 | 2 | 18 |
| Fifth year | 3 | 27 |
| Other children in family | ||
| Yes | 14 | 100 |
| Other child deceased | 1 | |
| Other children under 4 years | 7 | |
| One child 5–10 years old | 8 | |
| Two children 5–10 years old | 1 | |
| One child 11–18 years old | 5 | |
| Three children 11–18 years old | 3 | |
| One adult child | 1 | |
| Two adult children | 2 | |
Percentages may not equal 100 due to rounding
*One couple; **Two couples