SNAP: Supportive Non-Invasive Ventilation for ACS Prevention in Hospitalized Children with Sickle Cell Disease: Perceptions of Patients, Caregivers, and the Health Care Team

Background: Acute chest syndrome (ACS), the second most common cause of hospitalization and leading cause of death in children with sickle cell disease (SCD), often develops during a hospitalization for acute SCD in the setting of chest wall splinting, hypoventilation, and atelectasis from pain and opioid use. While incentive spirometry is an important component of ACS prevention and management, additional strategies are needed to prevent atelectasis during sleep. Bi-level positive airway pressure ventilation (BiPAP) provides positive pressure breaths through a mask to support ventilation, and is most commonly used to treat respiratory failure and chronic obstructive sleep apnea,. In 2021, we published our clinical innovation using BiPAP during sleep as supportive care during 53 hospitalizations on the general pediatric inpatient unit for hospitalized children with SCD to prevent ACS and/or to prevent acute respiratory failure among children with mild-moderate ACS. We found that our novel use of BiPAP was safe and feasible on a general pediatric unit; when recommended, it was tolerated in 40/53 (75%) hospitalizations. The goal of the current qualitative study was to identify perceived benefits and harms, and facilitators and barriers to the use and widespread implementation of “supportive non-invasive ventilation for ACS prevention” (SNAP) on a general pediatric inpatient unit.

Methods: We conducted semi-structured interviews with key implementation partners at Boston Medical Center (pediatric hospitalists and hematologists; nurses, respiratory therapists, child life specialists, clinical leadership, patients, and parents) about their experiences with and perceptions of SNAP. Interviews and a priori codes for the preliminary codebook were guided by the Promoting Action Research on Implementation in Health Services (PARiHS) framework using the Evidence, Context, and Facilitation constructs. Interviews were transcribed, checked for accuracy, and imported into NVivo 12 for analysis. Transcripts were double coded by three team members who independently coded the initial transcripts. The codebook was refined until consensus was reached. Team members independently reviewed data to identify preliminary themes and subsequently consolidated themes as a group. We were particularly interested in themes regarding benefits, advantages, disadvantages, facilitators, and barriers to individual use and institutional implementation of BiPAP as supportive care.

Results: Interviews were completed with 16 participants until thematic saturation was reached, including: 5 physicians, 4 nurses, 1 respiratory therapist, 1 child life specialist, 3 parents, and 2 patients. One physician and one nurse had administrative leadership roles. Major themes included: 1) Participants believed that BiPAP is effective at preventing ACS and – when already present – effective at preventing ACS from getting worse. 2) Despite some initial hesitation, inpatient team members endorsed that use of BiPAP on the general pediatric inpatient unit is appropriate. 3) Improving the patient experience with BiPAP is essential and requires a multi-tiered approach including both physical and social components. 4) Communication among inpatient team members and between staff and patients was critical for BiPAP initiation and success. 5) Nurses were key to the intervention success and required additional support. 6) The size of clinical unit and a “buy-in” culture supported intervention success. See Table 1 for detailed subthemes.

Conclusions/Future directions: Members of the health care team, patients, and parents perceive SNAP as effective at preventing ACS and respiratory decompensation, and believe that it is appropriate for use with stable hospitalized children at risk for ACS on a general pediatrics inpatient unit. Features of our inpatient pediatrics unit (small size and collaborative relationships between physicians, staff, and nursing leadership) facilitated successful implementation. Improving the patient experience remains a challenge, and will involve technical issues (mask comfort and pressure) and enhanced communication among health care team members and between staff, patients, and caregivers. We are utilizing these data to develop a protocol for a multicenter hybrid effectiveness/implementation trial of SNAP that incorporates these strategies.