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 |