Family Presence in Pediatric Cardiac Procedural Settings: A Qualitative Study of Clinicians, A Key Stakeholder Group.

Abstract

Background: With increased emphasis on healthcare transparency, parents are increasingly asking to be present for procedures performed on their children, especially in high-acuity contexts like care of children with congenital heart disease (CHD), where procedures may inform critical care decisions. In addition, observations of complex care may better communicate clinical knowledge and benefit grieving after adverse events. We examined clinicians' views on current family presence (FP) efforts and on the expansion of FP to include the observation of operative procedures.

Methods: This is a qualitative study using semi-structured interviews and content analysis within a pediatric heart center. Participants included perioperative and ICU nurses, physicians, advanced practice providers, and child life specialists. Interviews were recorded, transcribed, and analyzed using inductive content analysis.

Results: Twenty provider interviews were conducted; 70% had less than 10 years of experience, with 30% having between 10 and 20 years; 50% were physicians who work in procedural environments; 25% were nurses; 15% were advanced practice providers; 10% were child-life specialists. Four categories emerged: (1) positive impact of FP, (2) negative impact of FP, (3) limitations to achieving FP, and (4) policies and procedures for FP.

Conclusion: Participants reported that current FP uses reduce patient anxiety and improve patient safety, family understanding of clinical decisions, and coping. Drawbacks include parental interference in care, lack of protocols to guide FP, increased family/staff anxiety, lack of staff resources to support FP, and potential access limitations for diverse populations. Participants anticipated that these problems would occur with the expansion to intraoperative FP.