Objectives:
To characterize the stated practices of qualified Canadian physicians toward tracheostomy for pediatric prolonged mechanical ventilation and whether subspecialty and comorbid conditions impact attitudes toward tracheostomy.
Design:
Cross sectional web-based survey.
Subjects:
Pediatric intensivists, neonatologists, respirologists, and otolaryngology-head and neck surgeons practicing at 16 tertiary academic Canadian pediatric hospitals.
Interventions:
Respondents answered a survey based on three cases (Case 1: neonate with bronchopulmonary dysplasia; Cases 2 and 3: children 1 and 10 years old with pediatric acute respiratory distress syndrome, respectively) including a series of alterations in relevant clinical variables.
Measurements and Main Results:
We compared respondents’ likelihood of recommending tracheostomy at 3 weeks of mechanical ventilation and evaluated the effects of various clinical changes on physician willingness to recommend tracheostomy and their impact on preferred timing (≤ 3 wk or > 3 wk of mechanical ventilation). Response rate was 165 of 396 (42%). Of those respondents who indicated they had the expertise, 47 of 121 (38.8%), 23 of 93 (24.7%), and 40 of 87 (46.0%) would recommend tracheostomy at less than or equal to 3 weeks of mechanical ventilation for cases 1, 2, and 3, respectively (p < 0.05 Case 2 vs 3). Upper airway obstruction was associated with increased willingness to recommend earlier tracheostomy. Life-limiting condition, severe neurologic injury, unrepaired congenital heart disease, multiple organ system failure, and noninvasive ventilation were associated with a decreased willingness to recommend tracheostomy.
Conclusion:
This survey provides insight in to the stated practice patterns of Canadian physicians who care for children requiring prolonged mechanical ventilation. Physicians remain reluctant to recommend tracheostomy for children requiring prolonged mechanical ventilation due to lung disease alone at 3 weeks of mechanical ventilation. Prospective studies characterizing actual physician practice toward tracheostomy for pediatric prolonged mechanical ventilation and evaluating the impact of tracheostomy timing on clinically important outcomes are needed as the next step toward harmonizing care delivery for such patients.
Objective: Decision-making around tracheostomy placement and chronic respiratory support in children is complicated. Families often seek support and advice from outside the medical care team, including from social media. We undertook this study to characterize the content and nature of online resources created and managed primarily by caregivers of children living with tracheostomy and chronic mechanical ventilation.Design/Setting: We used a "grey literature" search methodology to identify internet resources created by caregivers of children with tracheostomy. We included only publicly available, nonindustry associated, English language, North American websites updated at least once in 2019. We then applied inductive content analysis to establish central themes, patterns and associations.Measurements/Main Results: We identified six blogs/forums that met our search criteria. We identified four main themes: (1) Uncertainty, (2) Lived experiencewants, needs, and emotions, (3) Seeking context and meaning, and (4) Advice/information sharing/support. Two patterns of coping were identified on the basis of the relationships between codes. The "Acceptance pathway" is associated with a sense of self-actualization, mastery, satisfaction, return to normalcy, and ultimately acceptance. The "Resignation pathway" is associated with a sense of lack of control, frustration, burnout and stress, persistent lack of normalcy, and resignation to the tracheostomy as a negative but necessary outcome.
Conclusion:Caregivers often come to see themselves as experts in the care of children with tracheostomy, though many still express ambivalence about their knowledge and skills.
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