Qualitative study of the clinician-parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK

Objective: To explore communication and interaction between parents and clinicians following neonatal ultrasound (US) and MRI of the brain of babies born preterm. Setting: This qualitative study was undertaken as part of a larger UK study of neonatal brain imaging. 511 infants were cared for in 14 London neonatal units with MR and cerebral US imaging in a specialist centre. Participants: Parents with infants born at <33 weeks gestation were randomised to receive prognostic information based on either MRI or US findings on their infants at term-corrected age. Methods: Discussions between parents and clinicians about the MRI or US result were audio recorded. Parents were told about the findings and their baby's predicted outcome. A topic guide ensured essential aspects were covered. Recordings were fully transcribed. Discussion of the scan results, the content and style of the interaction and parental response were analysed qualitatively in 36 recordings using NVivo V.10. Outcomes: Key themes and subthemes were identified in the clinician–parent discussions. Results: The overarching theme of ‘the communication interface’ was identified with three key themes: ‘giving information’, ‘managing the conversation’ and ‘getting it right’ and further subthemes. A range of approaches were used to facilitate parental understanding and engagement. There were differences in the exchanges when information about an abnormal scan was given. The overall structure of the discussions was largely similar, though the language used varied. In all of the discussions, the clinicians talked more than the parents. Conclusions The discussions represent a difficult situation in which the challenge is to give and receive complex prognostic information in the context of considerable uncertainty. The study highlights the importance of being able to re-visit specific issues and any potential areas of misunderstanding, of making time to talk to parents appreciating their perspective and level of knowledge. Trial registration number EudraCT 2009-013888-19; Pre-results.