title: Accounting for medical communication: parents' perceptions of communicative roles and responsibilities in the pediatric intensive care unit.
abstract: Through discourse analysis of transcribed interviews conducted over the phone with parents whose child died in the Pediatric Intensive Care Unit (PICU) (n = 51), this study uncovers parents' perceptions of clinicians' and their own communicative roles and responsibilities in the context of team-based care. We examine parents' descriptions and narratives of communicative experiences they had with PICU clinicians, focusing on how parents use accounts to evaluate the communicative behaviors they report (n = 47). Findings indicate that parental perceptions of communicative responsibilities are more nuanced than assumed in previous research: Parents identified their own responsibilities as participating as part of the team of care, gathering information, interacting with appropriate affect, and working to understand complex and uncertain medical information. Complementarily, parents identified clinician responsibilities as communicating professionally, providing medical information clearly, managing parents' hope responsibly, and communicating with appropriate affect. Through the accounts they provide, parents evaluate both parental and clinician role-responsibilities as fulfilled and unfulfilled. Clinicians' management of prognostic uncertainty and parents' struggles to understand that uncertainty emerged as key, complementary themes with practical implications for incorporating parents into the PICU care team. The study also highlights insights retrospective interview data bring to the examination of medical communication.
authors.affiliation: Department of Communication and Rhetorical Studies, Syracuse University, Syracuse, NY 13210, USA. cyngordon@gmail.com
authors.forename: Cynthia
authors.initials: C
authors.lastname: Gordon
authors.forename: Ellen
authors.initials: E
authors.lastname: Barton
authors.forename: Kathleen L
authors.initials: KL
authors.lastname: Meert
authors.forename: Susan
authors.initials: S
authors.lastname: Eggly
authors.forename: Murray
authors.initials: M
authors.lastname: Pollacks
authors.forename: Jerry
authors.initials: J
authors.lastname: Zimmerman
authors.forename: K J S
authors.initials: KJ
authors.lastname: Anand
authors.forename: Joseph
authors.initials: J
authors.lastname: Carcillo
authors.forename: Christopher J L
authors.initials: CJ
authors.lastname: Newth
authors.forename: J Michael
authors.initials: JM
authors.lastname: Dean
authors.forename: Douglas F
authors.initials: DF
authors.lastname: Willson
authors.forename: Carol
authors.initials: C
authors.lastname: Nicholson
mesh_terms: D001294:Attitude to Health; D001601:Bereavement; D002648:Child; D032882:Comprehension; D004644:Emotions; D006801:Humans; D015278:Intensive Care Units, Pediatric; D033262:Narration; D010290:Parents; D010348:Patient Care Team; D010819:Physician's Role; D011368:Professional-Family Relations; D011578:Psycholinguistics; D013727:Terminal Care; D035501:Uncertainty; D014481:United States