Objective Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations.
Methods 9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised.
Findings The study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur.
Conclusions These communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.
- Family management
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Contributors All authors were involved in developing the study concept and design. SE, SD, NB and AH were involved in data collection. All authors were involved in the analysis and interpretation of data. SE drafted the manuscript and each co-author provided critical feedback. SE is the guarantor.
Funding The study was supported by two grants from the Queensland University of Technology (QUT): a QUT Engagement Innovation Grant and an Institute of Health and Biomedical Innovation Early Career Researcher grant.
Competing interests AH was a participant in the study.
Ethics approval Children's Health Queensland Hospital and Health Service Human Research Ethics Committee (approval reference: HREC/14/QRCH/363).
Provenance and peer review Not commissioned; externally peer reviewed.