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Brain injury : [BI] · Jan 2013
Multicenter StudyParent perceptions of early prognostic encounters following children's severe traumatic brain injury: 'locked up in this cage of absolute horror'.
- Cecelia I Roscigno, Gerald Grant, Teresa A Savage, and Gerry Philipsen.
- School of Nursing, University of North Carolina , Chapel Hill, NC , USA .
- Brain Inj. 2013 Jan 1; 27 (13-14): 1536-48.
ObjectiveLittle guidance exists for discussing prognosis in early acute care with parents following children's severe traumatic brain injury (TBI). Providers' beliefs about truth-telling can shape what is said, how it is said and how providers respond to parents.MethodsThis study was part of a large qualitative study conducted in the US (42 parents/37 families) following children's moderate-to-severe TBI (2005-2007). Ethnography of speaking was used to analyse interviews describing early acute care following children's severe TBI (29 parents/25 families).ResultsParents perceived that: (a) parents were disadvantaged by provider delivery; (b) negative outcome values dominated some provider's talk; (c) truth-telling involves providers acknowledging all possibilities; (d) framing the child's prognosis with negative medical certainty when there is some uncertainty could damage parent-provider relationships; (e) parents needed to remain optimistic; and (f) children's outcomes could differ from providers' early acute care prognostications.ConclusionParents blatantly and tacitly revealed their beliefs that providers play an important role in shaping parent reception of and synthesis of prognostic information, which constructs the family's ability to cope and participate in shared decision-making. Negative medical certainty created a fearful or threatening environment that kept parents from being fully informed.
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