Fellow University of Michigan Medicine University of Michigan Michigan Medicine Ann Arbor, Michigan, United States
Background: Extracorporeal Membrane Oxygenation (ECMO) is highly technical and reserved for patients in cardiac or respiratory failure who might otherwise die without it. As previously observed, the stress of a life-threatening illness and the complexity of ECMO are powerful barriers to parental comprehension. Less is known about comprehension facilitators or the means by which parents develop understanding.
Objective: This study aims to describe parental understanding of the nature, risks, benefits, and alternatives to ECMO and the process by which parents come to that understanding.
Design/Methods: Qualitative interviews with parents were conducted during the first 72 hours of ECMO support in the neonatal, pediatric, and pediatric cardiac intensive care units at a single academic center between December 2019-October 2020. Parents were excluded if they were less than 18 years old, non-English speaking, or if they did not participate in the consent process. Parents of children who were previously on ECMO were also excluded. Interviews were conducted and coded by RC using grounded theory with progression through open, axial, and selective coding frameworks to develop a model of parental understanding during early ECMO support.
Results: 12 parents of 8 children were interviewed. Parents described the nature, risks, and alternatives to ECMO with the majority of their stated understanding arising from reconciliation of those entities with the benefits of ECMO. This reconciliation occurred in a cyclic process of meaning-making distinct from previously described linear models. Parental understanding begins with (1) receipt of information from the medical team and progresses through a cycle of (2) parental interpretation of information, (3) a decision regarding ECMO, (4) ongoing experiences following ECMO initiation, and (5) emphasis of positive information and experiences (Fig 1). The cycle ultimately returns to re-interpretation of information and re-assessment of the decision to initiate ECMO as more information is received and lived experiences occur. Representative quotes are shown in Table 1. Conclusion(s): The process by which parents come to understand ECMO is non-linear, ongoing, and dependent upon factors beyond the provision of information by the medical team. Awareness of this process can guide clinicians as they communicate with families. Though studied specifically in pediatric ECMO, aspects of the theoretical model are likely applicable to critical illness in general.
Figure 1. Conceptual Model - Process of Parental Understanding of ECMO
Table 1. Representative Quotes
Authors/Institutions: Rachel G. Clarke, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States; Thomas S. Valley, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States; Ryan P. Barbaro, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States; Mary K. Dahmer, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States; Janice I. Firn, University of Michigan Michigan Medicine, Ann Arbor, Michigan, United States
