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Online ISSN 1827-1596
Lamiani G. 1, Giannini A. 3, Fossati I. 2, Prandi E. 3, Vegni E. 1
1 CURA Research Center, Department of Health Sciences, Università degli Studi di Milano, Milan, Italy;
2 Unit of Clinical Psychology, San Paolo Hospital, Milan, Italy;
3 Pediatric Intensive Care Unit, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy
Background: There is a considerable variability among European countries regarding the management of end-of-life (EOL) care in the pediatric critical care setting. In Italy, recommendations on these issues are available but no study has investigated the parents’ experience. The aim of this study was to explore parents’ experience of EOL care in a Pediatric Intensive Care Unit (PICU) in Italy.
Methods: The study was conducted in a 6-bed PICU of a university affiliated hospital in Milan. Parents of children who died between 2007-2010 after a stay of at least 24 hours were eligible to participate. Through semi-structured interviews, parents were asked to describe the story of their child’s stay in the PICU, including his/her final moments. The interviews were audio-recorded, transcribed verbatim and analyzed according to the hermeneutic-phenomenology approach.
Results: Twelve parents of 8 children were interviewed. Four themes emerged that described the parents’ experience: 1) loss of parental role; 2) lack of physical intimacy with their child; 3) ambivalence about end-of-life decisions; and 4) reclaiming the dying process.
Conclusion: Our findings suggest that in order to improve pediatric EOL care we need to better integrate medical and parental priorities, in a shared process that allows parents to preserve their role and relationship with their child. The most critical aspect for parents was not related to the involvement (or not) in EOL decisions, but rather to the possibility of staying connected with their child during the hospitalization and at the time of death.