Table 1.
Study participants
| Patient Age | Sex (M/F) | Support | Time with Tracheostomy (Time from Discharge) | Indication for Tracheostomy (Diagnostic Category) | Family Member | ID | Format |
|---|---|---|---|---|---|---|---|
| 19 yr | M | Ventilator intermittent | 18 yr (17 yr) | Cerebral palsy (mixed neurologic and CLD) | Mother | 1 | In-person focus group |
| 5 yr | F | Tracheostomy only decannulated | 2 yr (4 yr) | Neuroblastoma (acquired upper airway obstruction) | Mother | 2 | In-person focus group |
| 7 yr | F | Ventilator | 4 yr (4 yr) | Brain tumor (neurologic) | Mother | 3 | In-person interview |
| 13 yr | F | Ventilator | 13 yr (12 yr) | Cerebral palsy (mixed neurologic and CLD) | Father | 4 | In-person interview |
| 28 yr | M | Ventilator | 3 yr (3 yr) | Muscular dystrophy (myopathic) | Mother/Patient | 5/6 | Video focus group |
| 5 yr | M | Ventilator overnight | 4 yr (4 yr) | CHD (acquired upper airway obstruction) | Mother | 7 | Video interview |
| 5 yr | M | Ventilator | 5 yr (5 yr) | Myopathy (myopathic) | Mother | 8 | Video interview |
| 9 mo | M | Tracheostomy only | 8 mo (4 mo) | Chronic lung disease (CLD) | Mother | 9 | Video interview |
| 2 yr | M | Ventilator intermittent | 1 yr (1 yr) | Acute flaccid myelitis (neurologic) | Mother | 10 | Video interview |
| 3 yr | M | Tracheostomy only | 3 yr (3 yr) | CHD (Mixed acquired upper airway obstruction, CLD) | Mother | 11 | Video interview |
| 6 yr | M | Ventilator decannulated | 3 yr (5 yr) | CPAM (mixed acquired upper airway obstruction, CLD) | Mother | 12 | Video interview |
| 1 yr | F | Tracheostomy ventilator | 1 yr (7 mo) | Chromosomal abnormality (neurologic) | Mother | 13 | Video interview |
Definition of abbreviations: CHD = congenital heart disease; CLD = chronic lung disease; CPAM = congenital pulmonary airway malformation; F = female; M = male.