title: Understanding the private worlds of physicians, nurses, and parents: a study of life-sustaining treatment decisions in Italian paediatric critical care.
abstract: This study's aim was to describe: (a) How life-sustaining treatment (LST) decisions are made for critically ill children in Italy; and (b) How these decisional processes are experienced by physicians, nurses and parents. Focus groups with 16 physicians and 26 nurses, and individual interviews with 9 parents were conducted. Findings uncovered the 'private worlds' of paediatric intensive care unit (PICU) physicians, nurses and parents; they all suffer tremendously and privately. Physicians struggle with the weight of responsibility and solitude in making LST decisions. Nurses struggle with feelings of exclusion from decisions regarding patients and families that they care for. Physicians and nurses are distressed by legal barriers to LST withdrawal. Parents struggle with their dependence on physicians and nurses to provide care for their child and strive to understand what is happening to their child. Features of helpful and unhelpful communication with parents are highlighted, which should be considered in educational and practice changes.
authors.affiliation: McGill University, Montreal, Canada. franco.carnevale@mcgill.ca
authors.forename: Franco A
authors.initials: FA
authors.lastname: Carnevale
authors.forename: Monica
authors.initials: M
authors.lastname: Benedetti
authors.forename: Amabile
authors.initials: A
authors.lastname: Bonaldi
authors.forename: Elena
authors.initials: E
authors.lastname: Bravi
authors.forename: Gaetano
authors.initials: G
authors.lastname: Trabucco
authors.forename: Paolo
authors.initials: P
authors.lastname: Biban
mesh_terms: D000328:Adult; D003422:Critical Care / Q000941:ethics; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D015278:Intensive Care Units, Pediatric; D007558:Italy; D008297:Male; D008875:Middle Aged; D009741:Nursing Staff, Hospital; D010290:Parents; D010820:Physicians; D011368:Professional-Family Relations