The Experience of Caring for a Medically Complex Child in the Neonatal Intensive Care Unit: A Qualitative Study of Parental Impact

Abstract

Background: Parents of children with life-limiting or life-threatening illnesses and/or medical complexity experience intense stress and pain soon after the birth and lifelong. Understanding parents’ experiences and coping strategies is the prerequisite to provide tailored support to families. Aim: To explore the experiences of parents of children with medical complexity (CMCs) during hospitalization in a Family-Centered Care (FCC) neonatal unit and after discharge. Design: Qualitative study. Methods: Semi-structured interviews were administered to the parents of children with medical complexity admitted to the Neonatal Intensive Care Unit (NICU) of Modena between October 2016 and January 2024. The interview was developed based on three time points: birth, hospitalization, and discharge, focusing on parents’ experiences, emotions, and communication with healthcare professionals. The interviews were analyzed using the template analysis. Results: A total of 10 parents were interviewed. Four domains were identified, encompassing eight significant themes in the parents’ experiences and their communication with healthcare professionals. The relevant emotions included anxiety and fear for survival, fatigue, and guilt over the child’s suffering, alongside hope and trust that parents felt entitled to nurture. Relationships with professionals were characterized by expectations and frustrations; mothers and fathers had different perceptions and reactions to the situation they were facing. Conclusions: This qualitative study explores the experiences of parents of CMCs in a neonatal intensive care unit adopting FCC. From admission to discharge, parents’ emotions were influenced by the child’s unique clinical history. Active listening and the humane attitude of healthcare professionals were the aspects most appreciated by parents.

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