The Family Impact of Having a Child with a Tracheostomy

• Published in: The Laryngoscope 2021-04, Vol.131 (4), p.911-915
• Main Authors: Johnson, Romaine F., Brown, Ashley, Brooks, Rebecca
• Format: Article
• Language: English
• Subjects: Activities of Daily Living; Cross-Sectional Studies; Family - psychology; Female; Humans; Infant; Laryngoscopy; Male; Ostomy; Prospective Studies; Quality of Life; Quality of life, pediatric tracheostomy, PedsQL; Respiratory failure; Surveys and Questionnaires; Tracheostomy; Tracheotomy
• ISSN: 0023-852X; 1531-4995
• DOI: 10.1002/lary.29003

Objectives Measure the quality of life among families with children with tracheostomies. Methods We performed a prospective cross‐sectional analysis of families with children with tracheostomies utilizing the PedQL Family Impact Module—a validated quality of life assessment. We determined if scores were impacted by demographics using regression analysis. We also compared the tracheostomy sample's scores to a previously published cohort of children with severe cerebral palsy and birth defects that required home nursing or nursing home placement using the student's t‐test. We determined the effect size of the difference between the two groups using the Cohen's d test. Results Ninety‐eight families are included in the study. The average (SD) age of tracheostomy placement was 1.6 (3.5) years. The population was 60% (59/98) male and 39% (38/98) Hispanic. The principal reason for tracheostomy was due to respiratory failure (76 out of 98; 78%). The mean (SD) total Family Impact score was 76 (19). The lowest domain score was daily activity problems, mean (SD) = 67 (30) followed by worry (mean = 69, SD = 24). The lowest question score was, “I worry about my child's future,” mean (SD) = 52 (37). When compared to the comparison group of medically fragile children, the scores were statistically similar except for communication totals where tracheostomy patients reported superior scores (78.3 vs. 62.9, 95% CI, −26 to −4.8, P = .005, Cohen's d = −0.66). Conclusion The presence of a tracheostomy is associated with QOL scores like other medically fragile children. Level of Evidence 4 Laryngoscope, 131:911–915, 2021