Rationale: Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision-making needs of parents who made different choices for their children could inform clinician counseling that better supports parents' diverse values and goals.
Objectives: To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention.
Methods: We conducted semi-structured interviews of parents who chose for or against home ventilation for their child within the previous 5 years. Parents were recruited from three academic centers across the United States. Interviews focused on parent-clinician communication during decision-making and how clinicians made the process easier or more difficult. Qualitative analysis was used to generate themes and identify key results.
Results: Thirty-eight parents were interviewed; 20 chose for and 18 chose against home ventilation. Five themes described their perspectives on how clinicians can facilitate high-quality decision-making: demonstrating dedication to families, effectively managing the medical team, introducing the concept of home ventilation with intention, facilitating meaningful conversation about the treatment options, and supporting and respecting the family's decision.
Conclusions: High-quality decision-making around home ventilation depends on individual clinician actions and the complex operations of large academic settings. Strong working relationships with parents, collaborative alliances with colleagues, and appropriate delivery of key content can help meet the needs of parents considering invasive breathing supports for their children.
Keywords: artificial respiration; children with medical complexity; medical ethics; qualitative research; shared decision-making.
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