Parent perceptions of early prognostic encounters following children's severe traumatic brain injury: 'locked up in this cage of absolute horror'.

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.

How healthcare provider talk with parents of children following severe traumatic brain injury is perceived in early acute care.

Healthcare provider talk with parents in early acute care following children's severe traumatic brain injury (TBI) affects parents' orientations to these locales, but this connection has been minimally studied. This lack of attention to this topic in previous research may reflect providers' and researchers' views that these locales are generally neutral or supportive to parents' subsequent needs. This secondary analysis used data from a larger descriptive phenomenological study (2005-2007) with parents of children following moderate to severe TBI recruited from across the United States. Parents of children with severe TBI consistently had strong negative responses to the early acute care talk processes they experienced with providers, while parents of children with moderate TBI did not. Transcript data were independently coded using discourse analysis in the framework of ethnography of speaking. The purpose was to understand the linguistic and paralinguistic talk factors parents used in their meta-communications that could give a preliminary understanding of their cultural expectations for early acute care talk in these settings. Final participants included 27 parents of children with severe TBI from 23 families. We found the human constructed talk factors that parents reacted to were: a) access to the child, which is where information was; b) regular discussions with key personnel; c) updated information that is explained; d) differing expectations for talk in this context; and, e) perceived parental involvement in decisions. We found that the organization and nature of providers' talk with parents was perceived by parents to positively or negatively shape their early acute care identities in these locales, which influenced how they viewed these locales as places that either supported them and decreased their workload or discounted them and increased their workload for getting what they needed.