Barling Janet A, Stevens John A, Davies Kierrynn M
School of Health and Human Sciences, Southern Cross University, Lismore, NSW, Australia.
Contemp Nurse. 2014;46(2):150-60. doi: 10.5172/conu.2014.46.2.150. Epub 2013 Oct 2.
Adolescents and Young Adults (AYAs) with cancer are being disadvantaged within the present health care system. Some of the factors identified as leading to this disadvantage include medical issues specific to AYAs with cancer, delay in diagnosis, fragmented services, lack of access to clinical trials and psychosocial life stage issues.
A major study investigated the experience that accompanies the stages of diagnosis, treatment, dying and death of an AYA from the perspective of family members. This paper discusses the major theme of the reality of hospitalisation.
Narrative inquiry was the methodology for this study. The participants were a self-selected purposeful sample of 26 family members. Open-ended interviews were conducted to obtain a story of the experience of having an AYA family member live with and die of cancer. A meta-narrative of the family member's experience was developed by NVivo8.
In amongst the mass of data this study produced, a major theme to emerge was the experience 'of the reality of hospitalisation'. Within this theme issues regarding: The place of treatment; the hospital experience; not fitting in; and, confronting illness and death were revealed.
While on the whole the cancer was treated with state of the art medicine, the experiences of the hospitalisation repeated consistently throughout this narrative reveals a failure to meet the higher order needs specific to adolescents and young adults and their families As a result this cohort were exposed to a landscape which did not facilitate a therapeutic experience, as well as would be expected for children and older adults.
癌症青少年和青年（AYAs）在当前医疗体系中处于不利地位。一些被认为导致这种不利状况的因素包括癌症AYAs特有的医疗问题、诊断延迟、服务分散、缺乏参与临床试验的机会以及心理社会生活阶段问题。
一项主要研究从家庭成员的角度调查了一名AYA从诊断、治疗、临终到死亡阶段的经历。本文讨论住院现实这一主要主题。
叙事探究是本研究的方法。参与者是26名家庭成员的自我选择的有目的样本。进行了开放式访谈，以获取关于有一名AYA家庭成员患癌并最终死亡的经历的故事。通过NVivo8软件生成了家庭成员经历的元叙事。
在本研究产生的大量数据中，出现的一个主要主题是“住院现实”的经历。在这个主题中，揭示了以下问题：治疗地点；医院经历；格格不入；以及直面疾病和死亡。
虽然总体上癌症是用最先进的医学进行治疗的，但在整个叙述中反复出现的住院经历表明，未能满足青少年和青年及其家庭特有的更高层次需求。因此，这一群体所面对的环境不利于获得治疗体验，而这种体验在儿童和老年人中是可以预期的。
