Research Reports - Parent perceptions of early prognostic encounters following children's severe traumatic brain injury
Brain Inj. 2013 Oct 2
Roscigno CI, Grant G, Savage TA, Philipsen G.
Abstract Objective: Little 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. Methods: This 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). Results: Parents 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. Conclusion: Parents 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.