Over her 12 years of collaborating with pediatric clinicians and engineers to design medical products, Jules Sherman has grown accustomed to addressing patient and caregiver pain points. But even she was taken aback by some of the problems facing families and caregivers of children with a tracheostomy.
“The frustrations we encountered often boiled down to insufficient support, insufficient training, and inadequate health care coverage,” said Sherman, MFA, director of the Biodesign Program at Children’s National Hospital’s Innovation Ventures. “It was very surprising and disturbing.”
Sherman, along with Kolaleh Eskandanian, PhD, MBA, PMP, vice president and chief innovation officer at Children’s National, and Kyle L. Bower, PhD, a researcher and instructor at the University of Georgia, identified the concerns in recently published research studying the lack of equitable access to quality care for pediatric tracheostomy patients and their families. Some of the primary issues include:
- Training. Caregivers felt the instructions offered by the hospital before their child’s discharge didn’t fully prepare them for how to deal with tracheostomy-related emergencies at home. Further, often the in-home nurses dispatched by Medicaid or insurance companies were not experienced in caring for tracheostomy patients.
- Peer support. While parents confronting the same issues can often find peace — and valuable advice — by consulting each other, study respondents said they found it difficult to make those connections.
- Supplies. Although the COVID-related supply chain issues have eased, tracheostomy supplies are often scarce. Exacerbating those issues, miscommunications between prescribing physicians and durable medical equipment (DME) companies can lead to incorrect or inadequate supplies shipping to patient families. As a result, some resort to online black markets. “I’m part of two tracheostomy Facebook groups to understand how parents are getting these supplies,” Sherman said. “Parents in some states or countries find themselves with extra supplies and send them to families who can’t get what they need. It's a matter of survival."
These problems can lead to disastrous outcomes. Accidental decannulation or obstruction of the tracheostomy tube, if gone unnoticed, can lead to death by suffocation. A routine weekly tube change can also cause a medical emergency if placed incorrectly. In fact, 60% of children with a tracheostomy in the U.S. are readmitted to the hospital for tracheostomy-associated respiratory infections within the first six months of their surgery.
Three interventions to improve care
Sherman is working with a team that includes Habib Zalzal, MD, an otolaryngologist at Children’s National, and Kevin Cleary, PhD, associate director of engineering at the Sheikh Zayed Institute to create a wearable device to detect potential tracheostomy complications. The device works by monitoring a child’s carbon dioxide exhalation and alerting their caregiver through a smartphone app when those levels dip too low. But she says children’s hospitals can offer interventions now to help parents and caregivers more effectively care for their children:
- Enhanced training. It’s essential to properly train families on emergency procedures in addition to routine tasks like tube changes. Allocating ample time is paramount, as many study respondents felt rushed and were hesitant to ask too many questions. One way to do this is to create a dedicated space for caregivers to practice techniques with a medical mannequin. Simulation training helps parents develop the necessary skills to effectively care for their children. Before discharge, it’s beneficial to have caregivers graduate from the mannequin and demonstrate proficiency with their child. In addition, Children’s National Rehabilitation & Specialized Care at Bunker Hill Road has living spaces available for families to prepare for discharge. These spaces allow them to practice all aspects of their child’s care independently while still having the safety net of hospital assistance nearby.
- Home preparedness through peer connection. Children’s National invites parents with experience caring for a child with a tracheostomy to share tips and techniques on how they stock their supplies and set up their home to accommodate medical equipment. They also provide home emergency preparedness plans. This not only gives caregivers insight into how other families manage their children’s care but also opens opportunities to establish connections with their peers.
- Integrated care. A lack of cohesion between medical professionals, durable medical equipment (DME) companies, and insurance companies creates a labyrinth of obstacles for participants. Reduced availability of supplies and equipment and unyielding insurance companies can prevent families from accessing what their children need. Advocate programs and integrated care programs provide essential support for overcoming these challenges.
Sherman says she’s grateful to be able to address these issues through her work at Innovation Ventures and feels it’s important for the medical community to bring at-home care up to speed with inpatient technology. “Today we are able to help kids with complex medical care needs survive and thrive,” Sherman said. “Therefore, we have a responsibility as a society to give their families the best technology available and sufficient training before sending them home.”
