Select Research Projects

Long-Term Ventilation Information and Decision-Making Support

Few resources exist to inform and support families facing whether to initiate long-term invasive or noninvasive ventilation for their child with a life-limiting illness, despite the impact of long-term ventilation on the child and family. Providing families with uniform information about the risks, benefits, and impact of long-term ventilation (LTV) may help augment clinician counseling and shared decision-making. Using existing literature and interviews of directors of pediatric home ventilation programs and parents, we created a booklet with illustrations that addresses a range of topics pertinent to both child and family and both in the short- and long-terms. Both invasive ventilation through a tracheostomy and noninvasive ventilation (eg, CPAP, BPAP) are covered. Readability is 6th grade level. It is written to be applicable in both inpatient and outpatient settings and at any institution. It has been professionally translated into Spanish.

This Information and Decision-Support Booklet is meant to be printed and given to families with a child who has or is at risk for chronic respiratory failure. It should be provided early in their information-gathering and/or decision-making processes. The booklet is meant to augment healthcare provider counseling and not replace it.  

English Version    Spanish Version

Funding: NIH/NICHD, K23 HD 082361 (PI: Edwards)

Pediatric ICU Continuity Strategies

With doctors commonly changing weekly and nurses working in shifts, care in pediatric ICUs is structured for patients that stay for only a few days and have acute problems. However, some patients require long PICU admissions. The transitory, even fragmented, care provided in pediatric ICUs does not meet the needs of these patients or their families and likely contributes to prolonged stays and patient/family dissatisfaction. Specifically, communication and transfer of information can be ineffective or inaccurate. Goals, timelines, management approaches, and patient familiarity can vary widely among providers. Relevant “big picture” and chronic issues can be neglected. Important decisions can be deferred. Families can become frustrated about their care. Additionally, fragmented care contributes to provider moral distress. Some institutions use continuity strategies (eg, primary/continuity intensivists, primary nurses, recurrent multidisciplinary team meetings) to mitigate this fragmented care. However, these continuity strategies are not prevalent and are understudied.

Therefore, we have/are investigating the prevalence, effectiveness, and best practices of these continuity strategies.  Thus far, we have conducted the only single-center randomized controlled trial of primary intensivists and primary nurses long-stay patients. We published the only large multi-site, retrospective study of primary intensivists and nurses and their association with shorter PICU length of stay and other outcomes. We surveyed primary intensivist and nurse practices at U.S. academic PICUs to determine their prevalence and ascertain how these practices are operationalized and perceived more widely. Finally, we brought experts and parents of long-stay patients together to, for the first time, both conceptualize high-quality care for long-stay patients and to reach consensus on continuity interventions for them. The resulting novel consensus statements provide PICUs with guidance on how to operationalize, implement, and sustain continuity interventions. These consensus statements have been endorsed by the Society of Critical Care Medicine and are now published here. Our future goals include a multi-institutional randomized trial of these strategies.

Funding: Lucile Packard Foundation for Children’s Health, #2020-05922 (PI: Edwards)
CUIMC Department of Pediatrics, John M. Driscoll, Jr., MD, Children's Fund Award (PI: Edwards)