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. Future plans include validating the booklet in other settings and developing an online resource. 

These Information and Decision-Support Booklets are 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. Both invasive ventilation through a tracheostomy and noninvasive ventilation are addressed. 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, many patients have complex chronic conditions and require long PICU admissions. The transitory 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, information about long-stay patients is ineffectively passed along, clinical goals and approaches vary among providers, and important decisions are delayed. Some institutions have spearheaded continuity strategies to address these problems. We are investigating the prevalence, applications, and impact of these strategies, as well as building consensus on good continuity practice. 
Funding: CUIMC Department of Pediatrics, John M. Driscoll, Jr., MD, Children's Fund Award (PI: Edwards)