title: The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France.
abstract: The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear such responsibilities because they do not have the required knowledge and should be protected from feeling culpable for such decisions. The aim of this grounded theory preliminary study was to examine the moral experience of parents of critically-ill children that required life-support decisions in France. A convenience purposive sample of seven parents was recruited in Paris. Five principal themes emerged as significant from these interviews: (1) a need for more information; (2) physicians should be responsible for life-support decisions; (3) the child's concerns and wishes need to be better heard; (4) maternal guilt; and (5) physicians require better training in parent communication. These findings raise important issues for clinical practice and further research in France.
authors.affiliation: Montreal Children's Hospital, McGill University Health Centre, Montreal, Canada. frank.carnevale@muhc.mcgill.ca
authors.forename: Franco A
authors.initials: FA
authors.lastname: Carnevale
authors.forename: Pierre
authors.initials: P
authors.lastname: Canouï
authors.forename: Philippe
authors.initials: P
authors.lastname: Hubert
authors.forename: Catherine
authors.initials: C
authors.lastname: Farrell
authors.forename: Francis
authors.initials: F
authors.lastname: Leclerc
authors.forename: Amélie
authors.initials: A
authors.lastname: Doussau
authors.forename: Marie-Josée
authors.initials: MJ
authors.lastname: Seguin
authors.forename: Jacques
authors.initials: J
authors.lastname: Lacroix
mesh_terms: D000223:Adaptation, Psychological; D001294:Attitude to Health / Q000208:ethnology*; D002673:Child, Hospitalized / Q000523:psychology; D002983:Clinical Competence; D003142:Communication; D003422:Critical Care / Q000523:psychology; D003657:Decision Making; D006117:Grief; D006167:Guilt; D006301:Health Services Needs and Demand; D006776:Hospitals, Pediatric; D006801:Humans; D007223:Infant; D015278:Intensive Care Units, Pediatric; D008020:Life Support Care / Q000523:psychology*; D009014:Morals; D015404:Nursing Methodology Research; D033282:Parental Consent / Q000523:psychology; D010290:Parents / Q000193:education / Q000523:psychology*; D010297:Paris; D010819:Physician's Role / Q000523:psychology; D011368:Professional-Family Relations; D036301:Qualitative Research; D012944:Social Support; D011795:Surveys and Questionnaires