Introduction. Patient engagement in care has recently become a much debated topic in the healthcare literature. However, few studies have investigated the process of caregivers’ engagement in care. In pediatric intensive care units (PICU), parental engagement at the end-oflife plays a pivotal role and has been encouraged through several policies. However, little is known about parental experience of their engagement in the care process. As a part of a broader project on the quality of pediatric end-of-life care, this study aimed to explore the parental perceptions of engagement. Methods. The study was conducted at the PICU of Policlinico Hospital, Milan. Semi-structured interviews were conducted with parents whose children died in the PICU between 2007-2010. The interviews were transcribed verbatim. Using a broad definition of engagement taken from the literature, excerpts related to engagement were extracted and then analyzed through content analysis. Results. We conducted 8 interviews with 12 parents. According to the parents’ experience, engagement encompassed three dimensions: 1) informative (to know); 2) decisional (to decide); and 3) relational (to be there). These dimensions could alternate or be present with different intensity during the child’s hospitalization. Conclusions. Our findings highlighted a multidimensional concept of engagement. The engagement of parents in the end-of-life care seemed to be grounded in their role as parents and seemed a way of fulfilling their role. Parental involvement toward clinicians and the PICU seemed to last over the child’s death and be a part of the bereavement process.
Keywords: Engagement, end-of-life care, pediatric intensive care
Giulia Lamiani, Julia Menichetti, Ivan Fossati, Alberto Giannini, Edi Prandi, Elena Vegni, Parental engagement at the end-of-life: A qualitative study in a Pediatric Intensive Care Unit in "PSICOLOGIA DELLA SALUTE" 3/2015, pp. 143-154, DOI:10.3280/PDS2015-003008