Sansom-Daly Ursula M, Zhang Megan, Evans Holly E, McLoone Jordana, Wiener Lori, Cohn Richard J, Anazodo Antoinette, Patterson Pandora, Wakefield Claire E
School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics, UNSW Sydney, Kensington, NSW 2052, Australia.
Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW 2031, Australia.
Cancers (Basel). 2023 Apr 3;15(7):2129. doi: 10.3390/cancers15072129.
Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness-yes/no, helpfulness and whether content caused stress-1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested.
患有危及生命疾病的青少年和青年(AYAs)需要支持来讨论并表达他们的临终选择。“表达我的选择”(VMC)是一份基于研究的美国高级护理计划指南,旨在帮助推动这些艰难的讨论。这项多视角研究旨在评估其对患有癌症的澳大利亚AYAs的适用性、可接受性和临床考量。43名参与者,包括正在接受或最近完成癌症治疗的AYAs、他们的父母以及多学科健康专业人员,对VMC每个部分的可接受性进行了定量评估(适用性——是/否、帮助程度以及内容是否引起压力——1 = 完全没有,至5 = 非常)和定性评估(压力来源)。AYAs还评估了完成文档几个部分的益处和负担,以为临床考量提供信息。我们进行了混合方法分析以获得描述性统计数据并确定突出主题。在可接受性方面,总体而言,96%的参与者认为VMC是合适的。对他们自身/孩子/患者的情况、对他人的感知帮助程度以及压力程度的评分,平均分别为4.1、4.0和2.7/5。压力归因于个人和自身因素以及人际担忧。除了“精神思考”部分(第6部分)外,所有部分都被认为益处大于负担。虽然VMC是一份适用于患有癌症的AYAs的可接受的高级护理计划指南,但建议针对澳大利亚的情况对该指南进行修改。实施VMC的健康专业人员需要解决并减轻此处确定的预期压力来源。评估新的经过文化适应的澳大利亚VMC指南影响的未来研究是重要的下一步。最后,提出了本研究的临床意义。