RESUMO
This study examined Morbidity and Mortality (M&M) review practices and perspectives of physicians and parents regarding parent participation in M&M review. Surveys were distributed to parents of children with a prior hospitalization for congenital heart disease (CHD) and physicians caring for pediatric CHD patients. Response distributions and Fisher's exact tests were performed to compare parent and physician responses. Qualitative survey data were thematically analyzed. Ninety-two parent and 36 physician surveys were analyzed. Physicians reported parent input or participation was rarely sought in M&M review. Parents with direct experience of adverse events or death of their child reported providers discussed events with them in a timely manner and answered their questions; however, nearly half wished their healthcare team had done something differently during the disclosure. There was no statistical difference between groups regarding transparency (P = .37, .79); however, there was a significant difference in perspectives regarding parental involvement in the M&M review (P < .001). Common themes important to parents which emerged from the qualitative analysis were being adequately informed, feeling their perspectives were acknowledged and respected, having attentive and empathetic providers, and receiving consistent messaging. Although rarely included in current practice, parent participation in M&M could offer unique insight and increase accountability to proposed change elucidated by M&M review.