Department of Psychology and Neuroscience, Dalhousie University, Halifax, Canada.
Centre for Pediatric Pain Research, IWK Health Centre, Halifax, Canada.
J Adolesc Young Adult Oncol. 2019 Oct;8(5):587-592. doi: 10.1089/jayao.2019.0015. Epub 2019 Jun 28.
Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer. Nine HCPs (four nurses and five physicians) took part in in-depth semistructured interviews. Participants were eligible if they were a nurse or physician in Atlantic Canada; cared for at least one AYA patient with terminal cancer in the past 3 years; and were able to speak and understand English. Data were analyzed using interpretive phenomenological analysis. Analyses revealed four superordinate themes present in the data: (1) many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; (2) an intense emotional experience compared with caring for patients with terminal cancer of other ages; (3) personal identification with patients and their families; and (4) attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness. HCPs experienced unique emotional and logistical challenges when caring for AYAs with terminal cancer, which can influence the care they provide. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of health care services to this population.
青少年和青年（AYA）患有晚期癌症是一个边缘化群体，他们有独特的医疗和心理社会需求。AYA 通常报告在他们的医疗保健体验方面存在挑战，然而，对于提供这种特殊护理的医疗保健提供者（HCP）的体验知之甚少。本研究的目的是了解 HCP 照顾患有晚期癌症的 AYA 的体验。9 名 HCP（4 名护士和 5 名医生）参加了深入的半结构化访谈。参与者必须符合以下条件：在加拿大大西洋地区担任护士或医生；在过去 3 年内至少照顾过一名患有晚期癌症的 AYA 患者；能够说和理解英语。使用解释现象学分析对数据进行分析。分析揭示了数据中存在的四个主要主题：（1）提供 AYA 护理相关的许多未知和不确定性，加上针对该人群的培训很少或没有；（2）与照顾其他年龄段的终末期癌症患者相比，体验到强烈的情感；（3）与患者及其家属产生个人认同感；（4）试图理解情况，但被不公正和不公平的感觉所挫败。HCP 在照顾患有晚期癌症的 AYA 时会遇到独特的情感和后勤挑战，这会影响他们提供的护理。HCP 的体验强调了培训的必要性，以支持临床医生照顾患有晚期癌症的 AYA，从而优化他们自己的福祉和为这一人群提供医疗保健服务。
