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Table 2 Parent-Reported Children’s Information (N = 20)

From: Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy

Characteristics*

Phase 1 (n = 10)

Phase 2 (n = 10)†

Age, range‡

3 months–15 years 4 months

3.5 months–10 years

Age of tracheostomy decision, range

1 month–14 years 6 months

At birth–about 10 years

Duration of tracheostomy if applicable, range

3 months–1 year ongoing

1 year and 9 months–3 years ongoing

Sex, n (%)

Boys

7 (70)

4 (40)

Girls

3 (30)

6 (60)

Race, n (%)

White

9 (90)

6 (60)

Black

1 (10)

0 (0)

Mixed (White with one other race)

0 (0)

3 (30)

Hispanic

0 (0)

1 (10)

Final decision, n (%)

Tracheostomy with ventilator

4 (40)

5 (50)

Tracheostomy without ventilator

2 (20)

0 (0)

No tracheostomy

4 (40)

5 (50)

Current condition, n (%)

Tracheostomy with ventilator, alive

3 (30)

4 (40)

Tracheostomy without ventilator, alive

2 (20)

0 (0)

Tracheostomy removed, alive

0 (0)

1 (10)

No tracheostomy, alive

3 (30)

1 (10)

Deceased more than 6 months ago

2 (20)

4 (40)

  1. *Parents reported that their children had diverse diagnoses, including chromosomal disorders (e.g., trisomy 18), musculoskeletal syndromes, rare genetic conditions, brain malformations and injury (e.g., cerebral palsy), and pulmonary pathology (e.g., bronchopulmonary dysplasia and malacia)
  2. †One child was also included in Phase 1
  3. ‡birth to date of interview or date of death