title: Parents' experiences of sharing neonatal information and decisions: consent, cost and risk.
abstract: This paper is about the care of babies with confirmed or potential neurological problems in neonatal intensive care units. Drawing on recent ethnographic research, the paper considers parents' experiences of sharing information and decisions with neonatal staff, and approaches that support or restrict parents' involvement. There are growing medico-legal pressures on practitioners to inform parents and involve them in their babies' care. Data are drawn from observations in four neonatal units in southern England, and interviews with the parents of 80 babies and with 40 senior staff. The paper compares standards set by recent guidance, with parents' views about their share in decision-making, their first meetings with their babies, 'minor' decision-making, the different neonatal units, being a helpless observer and missed opportunities. Parents' standards for informed decisions are summarised, with their reported views about two-way decision-making, and their practical need to know. Whereas doctors emphasise distancing aspects of the consent process, parents tend to value 'drawing together' aspects.
authors.affiliation: Social Science Research Unit, Institute of Education, University of London, 18 Woburn Square, London, WC1H ONR, UK. p.alderson@ioe.ac.uk
authors.forename: Priscilla
authors.initials: P
authors.lastname: Alderson
authors.forename: Joanna
authors.initials: J
authors.lastname: Hawthorne
authors.forename: Margaret
authors.initials: M
authors.lastname: Killen
mesh_terms: D000884:Anthropology, Cultural; D001291:Attitude of Health Personnel; D003256:Community Participation / Q000523:psychology*; D003657:Decision Making; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal / Q000331:legislation & jurisprudence / Q000458:organization & administration* / Q000592:standards; D009421:Nervous System Malformations / Q000523:psychology; D033282:Parental Consent / Q000331:legislation & jurisprudence / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research