Table 2.
Caregiver and child characteristics (n = 21)
| Variable | % |
|---|---|
| Respondent gender | |
| Female | 71.4 |
| Male | 28.6 |
| Respondent age | |
| < 30 years | 9.5 |
| 30–40 years | 57.2 |
| 41–50 years | 33.3 |
| Respondent education | |
| Primary school, secondary school and secondary modern | 19.0 |
| Completed training | 23.8 |
| University degree (Bachelor, Master, Doctorate) | 28.6 |
| Other | 28.6 |
| Respondent family status | |
| Single | 4.8 |
| Married | 76.1 |
| Living in a steady partnership | 14.3 |
| Divorced, separated | 4.8 |
| Respondent employment status | |
| Employee full-time | 19.0 |
| Employee part-time | 38.1 |
| Civil servant | 4.8 |
| Not gainfully employed or capable of gainful employment | 33.3 |
| Other | 4.8 |
| Child SMA diagnosis | |
| SMA I | 62.0 |
| SMA II | 38.0 |
| Child gender | |
| Female | 47.6 |
| Male | 52.4 |
| Child age at time of interview (years) | |
| 2 years | 14.3 |
| 3 years | 19.0 |
| 4 years | 33.3 |
| 5 years | 4.8 |
| 7 years | 9.5 |
| 11 years | 14.3 |
| 15 years | 4.8 |
| Child age at time of diagnosis (months) | |
| 1–4 months | 23.8 |
| 5–12 months | 47.6 |
| 13–18 months | 23.8 |
| > 18 months | 4.8 |
| Child age at drug therapy initiation | |
| < 4 months | 9.5 |
| 5–11 months | 28.6 |
| 1–3 years | 33.3 |
| 4–10 years | 23.8 |
| > 11 years | 4.8 |
| Ventilatory support | 47.6 |
| Enteral nutrition | 33.3 |
| Cough assist | 71.4 |
| Best motor function achieved | |
| Rolling over without support | 9.5 |
| Crawling on hands and knees | 28.6 |
| Sits independently | 28.6 |
| Stands independently | 9.5 |
| None | 23.8 |