Introduction: Every two hours, a child is placed on extracorporeal membrane oxygenation (ECMO) worldwide. While lifesaving, ECMO is associated with high complication rates with up to 70% of serious events such as bleeding or thrombosis, infection, neurologic injury and circuit issues, and mortality reaches 45% in cardiac failure. Beyond these physical risks were an often-overlooked consequence, parents endure prolonged uncertainty, repeated crises, and emotionally charged decisions, which can lead to trauma-related- psychopathology. This study aimed to better understand the lived experiences of parents following their child’s ECMO course. Methods: In this multicenter qualitative study, parents of children who underwent ECMO completed the IES-R and HADS to screen for post-traumatic stress disorder (PTSD), anxiety, and depression, followed by semi-structured interviews on their overall experience, team dynamics, long-term impact, and regret. Qualitative analysis was performed using a grounded theory approach with three independent coders with attention to individual reflexivity. Through bi-weekly meetings, initial and axial codes were generated, leading to final thematic construct. Results: Ten parents across four sites were enrolled. High probability of PTSD (IES-R >39) was found in 60%, and 50% screened positive for anxiety and/or depression (HADS >11). These findings were mirrored in the qualitative analysis where trauma emerged as final theme. When evaluating the overall ECMO experience, parents reported fear of unknown outcomes and the long-term impact on both their child and siblings. Regarding communication during ECMO, parents desired clear communication and potentially written resources on ECMO support. Parents emphasized the desire for involvement in decisions around comforting their child and noted they trusted the medical team in medical decision making surrounding ECMO. Positive parent-staff relationships were frequently emphasized by parents. While most had no regrets about pursuing ECMO, some regretted staff communication or word choices. Conclusions: Trauma-related psychopathology is common and enduring among parents following their child’s ECMO. Many meet criteria for PTSD, anxiety, or depression. These findings highlight the urgent need for trauma-informed care practices.
Karam et al. (Sun,) studied this question.