Equitable Care for Children With a Tracheostomy: Addressing Challenges and Seeking Systemic Solutions

Area of Science:

• Pediatric Healthcare
• Health Services Research
• Social Determinants of Health

Background:

• Children with medical complexity (CMC) experience substantial barriers to accessing essential medical devices, supplies, home nursing, and social services.
• These access challenges contribute to healthcare inequities, impacting follow-up care, increasing emergency department use, and potentially leading to adverse events.
• Addressing these systemic issues necessitates comprehensive policy reform at state and federal levels.

Purpose of the Study:

• To explore the experiences and systemic challenges faced by healthcare professionals and caregivers managing children with medical complexity requiring a pediatric tracheostomy.
• To identify specific barriers related to healthcare access, insurance, and medical supply procurement for this population.

Main Methods:

• An exploratory qualitative approach was employed.
• Semi-structured interviews were conducted with 17 health professionals and primary caregivers in the United States.
• Thematic analysis was used to analyze the transcribed interview data.

Main Results:

• Key challenges identified include difficulties with health insurance access and the procurement of essential medical supplies.
• Logistical constraints and the need for interim solutions were also significant issues impacting care.
• Opportunities for improvement were identified across these domains.

Conclusions:

• Socioecological factors significantly influence the health and quality of life for children with medical complexity and their families.
• A comprehensive approach is needed to address the growing gap in quality of care, considering patient needs, regulatory frameworks, and affordability.
• Policy changes and improved collaborations are crucial for enhancing care delivery and outcomes for CMC.