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确诊时与医疗服务提供者建立联系:青少年/青年癌症幸存者的观点

Connecting with healthcare providers at diagnosis: adolescent/young adult cancer survivors' perspectives.

作者信息

Phillips Celeste R, Haase Joan E, Broome Marion E, Carpenter Janet S, Frankel Richard M

机构信息

a Department of Science Nursing Care , Indiana University School of Nursing , Indianapolis , IN , USA.

b Division of Healthcare of Women and Children , Duke University School of Nursing , Durham , North Carolina , United States.

出版信息

Int J Qual Stud Health Well-being. 2017 Dec;12(1):1325699. doi: 10.1080/17482631.2017.1325699.

Abstract

Adolescents and young adults (AYAs) with cancer are a vulnerable and underserved population. AYAs' cancer survivorship is complicated by physical and psychosocial late effects which requires long-term follow-up. Connectedness with healthcare providers (HCPs) is a protective factor that may improve long-term follow-up behaviours of AYAs. However, little is known about AYAs' experiences connecting with HCPs. The purpose of this study was to describe AYA cancer survivors' experiences connecting with HCPs. This empirical phenomenological study interviewed nine AYA cancer survivors diagnosed during adolescence. Individual interviews were conducted and analysed using an adapted Colaizzi approach. The essential structure reveals that AYAs begin their experience of connectedness with a sense of disconnectedness prior to treatment. The diagnosis is a period of confusion and emotional turmoil that interfere with the AYAs' ability to connect. When AYAs come to accept their illness and gain familiarity with the environment, they then put forth an effort to connect with HCPs. Although it takes time for AYAs to reciprocate efforts to connect, HCPs should be aware that AYAs carefully assess and make judgments about whether or not HCPs can be trusted. Findings raise awareness of the actions and behaviours of HCPs that hinder connectedness, and targeted in future research.

摘要

患有癌症的青少年和青年是一个脆弱且未得到充分服务的群体。青少年和青年癌症幸存者会受到身体和心理社会晚期效应的影响,这使得癌症幸存者的情况变得复杂,需要长期随访。与医疗保健提供者(HCPs)建立联系是一个保护因素,可能会改善青少年和青年的长期随访行为。然而,对于青少年和青年与医疗保健提供者建立联系的经历却知之甚少。本研究的目的是描述青少年和青年癌症幸存者与医疗保健提供者建立联系的经历。这项实证现象学研究采访了九名在青少年时期被诊断出患有癌症的幸存者。采用改编后的科莱齐方法进行个人访谈并分析。基本结构显示,青少年和青年在治疗前以一种脱节感开始他们的联系体验。诊断期是一个混乱和情绪动荡的时期,会干扰青少年和青年建立联系的能力。当青少年和青年开始接受自己的疾病并熟悉环境后,他们会努力与医疗保健提供者建立联系。尽管青少年和青年需要时间来回应建立联系的努力,但医疗保健提供者应该意识到,青少年和青年会仔细评估并判断医疗保健提供者是否值得信任。研究结果提高了人们对阻碍建立联系的医疗保健提供者的行为和表现的认识,并为未来的研究指明了方向。

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