Tracheostomy Decision Making and Counseling: Comparing Providers' and Caregivers' Perspectives and Perceptions

Area of Science:

• Pediatric Medicine
• Healthcare Communication
• Decision-Making in Healthcare

Background:

• Tracheostomy decisions in children are complex, involving medical, quality of life, and family values.
• Current tracheostomy counseling lacks standardized guidelines, leading to practice variations.
• Existing research has explored caregiver and provider viewpoints separately, not concurrently.

Purpose of the Study:

• To investigate discrepancies between healthcare providers' and caregivers' perceptions of tracheostomy counseling.
• To compare perspectives on the decision-making process for pediatric tracheostomy.

Main Methods:

• Conducted semi-structured interviews with caregivers and healthcare providers for children evaluated for tracheostomy.
• Employed qualitative analysis of interview transcripts to identify emergent themes.
• Performed comparative analysis of themes between caregiver and provider groups.

Main Results:

• Caregivers (81%) more frequently provided personal child descriptions than providers (35%).
• Caregivers expressed concerns (69%) and hopes/dreams (75%) for their children more than providers (59% and 29%, respectively).
• Caregivers prioritized growth/development (69%) and discharge (38%), while providers focused on discharge (47%) and growth (29%).

Conclusions:

• A significant disconnect exists between caregivers and providers in tracheostomy counseling.
• Enhanced communication and understanding are crucial for aligning counseling with family priorities.
• Tailoring provider counseling approaches can better support families in tracheostomy decisions.