Behavioural Sciences Unit proudly supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics, UNSW Sydney, Kensington, New South Wales, Australia.
PLoS One. 2022 Jul 8;17(7):e0270797. doi: 10.1371/journal.pone.0270797. eCollection 2022.
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
对于相当一部分青少年和年轻成年人来说，他们的癌症是无法治愈的，因此，开展适合其发展阶段的临终讨论至关重要。已经为青少年和年轻成年人的临终沟通制定了护理标准，但是，许多医疗保健专业人员并不自信能够领导这些对话，导致最佳实践临终沟通的实施存在差距。我们提出了一项德尔菲研究方案，为临床医生培训的制定和实施提供信息，以增强医疗保健专业人员在临终对话方面的能力。我们的方法将为解决与青少年和年轻成年人进行临终沟通的障碍提供培训，这些障碍存在于西方青少年和年轻成年人癌症全球协议国家中。青少年和年轻成年人癌症全球协议团队由来自澳大利亚、新西兰、美国、加拿大和英国的 26 名研究人员组成。24 名消费者，包括有癌症病史的青少年和年轻成年人及其照顾者，为研究设计提供了信息。我们描述了一份经过修改的德尔菲问卷的方法。该问卷旨在确定与青少年和年轻成年人进行临终沟通的最佳时机、青少年和年轻成年人临终沟通临床医生培训中需要的实践相关内容，以及基于证据的培训模式的可取性。第一轮涉及一个由调查人员组成的专家小组，负责确定合适的问卷项目。第二轮和第三轮涉及国际多学科医疗保健专业人员的问卷，随后由青少年和年轻成年人提供进一步的意见。研究的第二阶段将设计支持最佳实践临终沟通的医疗保健专业人员培训。这项迭代和参与式研究的结果将直接为青少年和年轻成年人癌症全球协议国家实施最佳实践临终沟通提供信息。确定的障碍和培训偏好将直接有助于开发临床医生培训资源。我们的研究结果将为在不同国家进一步研究青少年和年轻成年人的临终沟通提供框架。我们的经验还突出了在开展高度协作的全球研究方面的有效方法。
