Table 1.
Study participants by age group (emerging adults 18–30 years of age with cystinosis; adults 30 + years of age with cystinosis; parents of adults with cystinosis), gender, and data collection type (focus group, individual interview, or both)
| Participants by age, gender, and data collection type | Participated in focus group only | Participated in individual interview only | Participated in individual interview and focus group | Total participants |
|---|---|---|---|---|
| Men aged 18–30 | 6 | 2 | 8 | |
| Men aged 30+ | 4 | 4 | ||
| Women aged 18–30 | 1 | 4 | 3 | 8 |
| Women aged 30+ | 2 | 2 | ||
| Mothers | 8 | 3 | 2 | 13 |
| Fathers | 8 | 2 | 1 | 11 |
| Total participants | 29 | 9 | 8 | 46 individuals (from 22 families) |