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一项关于肿瘤学专家对癌症患者年轻人偏好理解的探索性研究。

An exploratory study of oncology specialists' understanding of the preferences of young people living with cancer.

机构信息

Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.

出版信息

Soc Work Health Care. 2013;52(2-3):166-90. doi: 10.1080/00981389.2012.737898.

DOI:10.1080/00981389.2012.737898
PMID:23521383
Abstract

Awareness about the specific needs of Adolescents and Young Adults (AYA) aged 15-25 with a diagnosis of cancer has grown rapidly over the past 10 years. To improve outcomes for these patients it is essential that services are developed within youth friendly models. This requires awareness by healthcare professionals of unique biological, genetic, epidemiological, psychological, social, and cultural factors that affect the AYA population. This study sought to explore oncology professionals understanding of the healthcare preferences of AYAs with cancer receiving treatment at a specialist cancer centre. Participants comprised 60 professionals in allied health (n = 15); nursing (n = 32); oncology (n = 6) and those from the Victorian AYA Cancer Service (n = 7). A questionnaire, developed from pilot work, collected demographic information, investigated professionals' top five perceived issues for AYAs, and examined perceptions in the areas of communication; information provision; environment; services; education, employment and social life, fertility and sexuality; support and survivorship. Results illustrate that, with a strong focus on survival and physical wellbeing, professionals significantly underestimate the breadth of AYA psychosocial concerns. The findings further indicate: that young people report different healthcare preferences compared to those reported by professionals; there are varying levels of professional skill, experience and confidence; there are significant workforce development and support needs for professionals; and AYA models of care require rigorous evaluation to ensure the improvement of outcomes for young people living with cancer.

摘要

过去 10 年来,人们对 15-25 岁患有癌症的青少年和青年(AYA)的特殊需求的认识迅速提高。为了改善这些患者的结局,必须在青年友好型模式下开发服务。这需要医疗保健专业人员意识到影响 AYA 人群的独特的生物学、遗传学、流行病学、心理学、社会和文化因素。本研究旨在探讨肿瘤专业人员对在专门癌症中心接受治疗的癌症 AYA 的医疗偏好的理解。参与者包括 60 名从事辅助医疗的专业人员(n = 15);护理人员(n = 32);肿瘤学专业人员(n = 6)和维多利亚 AYA 癌症服务机构的专业人员(n = 7)。调查问卷由试点工作开发,收集人口统计信息,调查专业人员认为 AYA 的前五个主要问题,并在沟通领域、信息提供、环境、服务、教育、就业和社会生活、生育和性、支持和生存等方面考察看法。研究结果表明,专业人员强烈关注生存和身体健康,而大大低估了 AYA 心理社会问题的广泛性。调查结果还表明:与专业人员报告的相比,年轻人报告了不同的医疗偏好;专业人员的技能、经验和信心水平存在差异;专业人员有重大的劳动力发展和支持需求;AYA 的护理模式需要严格评估,以确保改善癌症青年的结局。

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