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

Abstract

ABSTRACT Background Children with medical complexity (CMC) often face significant barriers to accessing care, obtaining appropriate insurance coverage for medical devices, technology, supplies, home nursing and social services. These challenges, when viewed through the lens of social determinants of health, highlight concerns about healthcare inequity. These inequities can impact CMC by limiting access to follow‐up appointments, leading to disproportionate use of emergency department services, restricting support services, reducing the quality of medical products and increasing the likelihood of adverse events. Addressing these concerns requires comprehensive policy changes at both state and federal levels. Achieving successful collaborations between states and federal agencies is particularly challenging and may take months or even years to accomplish. Objectives Through an exploratory qualitative approach, this study facilitates a nuanced inquiry into the experiences and systemic challenges encountered by medical professionals and primary caregivers managing CMC who require a paediatric tracheostomy. Methods Qualitative interviews were conducted with 17 health professionals and primary caregivers residing in the United States. A thematic analysis was used to analyse the transcribed interview data. Results Using exploratory thematic analysis, we identified challenges and opportunities for improvement regarding (a) access to health insurance, (b) procurement of essential medical supplies, (c) logistical constraints and (d) identifying interim solutions. Conclusion Building on our findings, we discuss how socioecological factors impact health and quality of life of CMC and families. Additionally, we address the growing gap in quality of care through a comprehensive approach that considers patient needs, regulatory frameworks and affordability. Patient or Public Contribution Medical practitioners and healthcare professionals were actively involved in the development, production and implementation of the research project. These individuals were given the opportunity to review their statements and review the manuscript before publishing. While caregivers did not engage in member checking, each provided their consent before data collection.

Keywords

• caregivers
• healthcare
• paediatrics
• parents
• policy
• tracheostomy