Institute of Health and Biomedical Innovation and School of Psychology and Counselling, Queensland University of Technology, Brisbane, Queensland, Australia.
School of Early Childhood, Queensland University of Technology, Brisbane, Queensland, Australia.
BMJ Support Palliat Care. 2020 Jun;10(2):e13. doi: 10.1136/bmjspcare-2016-001130. Epub 2017 Mar 7.
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.
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.
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.
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.
讨论患有危及生命疾病的儿童病情恶化的潜在可能性，这对未来的护理有好处，但在临床环境中，由于疾病轨迹不确定是常见的，因此具有挑战性。现有研究仅限于间接证据形式，例如临床医生和家庭的自我报告数据。本研究直接探讨了在实际儿科姑息治疗咨询中如何管理有关恶化的讨论。
在澳大利亚儿科姑息治疗服务中，对 9 次咨询进行了录像。每次咨询都涉及同一位儿科姑息治疗专家。使用会话分析来识别和探讨反复出现的讨论恶化的方式。
该研究确定了儿科姑息治疗专家使用的两种交际实践，为讨论恶化提供了机会：（1）征求家庭对咨询的议程；（2）发起和维持讨论恶化可能性的话题。在这些不同的实践中，一个共同的特点是间接发起关于恶化的讨论。这种方法使这些讨论成为可能，但并没有强制或暗示必须进行此类讨论。
这些交际实践平衡了讨论恶化的好处，同时也承认让儿童的家庭指导讨论的重要性。这是通过创造讨论恶化的机会来实现的，而不使这些讨论成为必要。
