Parent perceptions of early prognostic encounters following children’s severe traumatic brain injury: ‘Locked up in this cage of absolute horror’

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.

• Communication
• disability
• ethnography of speaking
• hope
• prognostication or prognosis
• speech codes theory
• traumatic brain injury
• truth-telling.

Acknowledgements

We thank the parents who shared their personal stories and insight so that others could learn and early acute care communication practises could be improved.