Patient and family-centered care practices during inter-facility transfer of critically ill children: an exploratory mixed methods study.

INTRODUCTION: The inter-facility transfer of a critically ill child to the pediatric intensive care unit (PICU) is a highly stressful time for families. This exploratory study aimed to identify care practices important to patients/families during urgent transfers of children from frontline settings to a higher level of care. METHODS: We conducted a mixed methods study using surveys and interviews of parents/guardians of children transferred to a single PICU from external institutions. Participants were surveyed about their perceived importance of transfer-related care practices, specifically those addressing families' understanding of transfer, communication, family presence, and patient/family needs. A subset of parents were interviewed to characterize their transfer experience and identify improvement opportunities. RESULTS: Of 23 patient-parent dyads who consented, 13 parents completed the initial survey, 11 completed the follow-up survey, and four participated in interviews. From the surveys, three care practices were identified as most important to responding families: 1) providing parents/guardians with verbal information about their child's condition, 2) providing patients the ability to request their parents/guardians during transfer, and 3) immediately contacting families with significant patient status changes. Interviews revealed that communication with healthcare teams is a substantial factor affecting families' experience of a smooth vs. stressful inter-facility transfer. CONCLUSIONS: In this exploratory study, care practices ensuring that timely information about a child's clinical condition is relayed to their parents/guardians were most important to families of critically ill children undergoing inter-facility transfer to the PICU. Communication between families and healthcare teams plays a significant role in families' experiences of transfer.