癌症治疗期间与健康相关的生活质量：年轻成年（23 - 39岁）癌症幸存者及主要非正式照料者的观点
Health related quality of life during cancer treatment: Perspectives of young adult (23-39 years) cancer survivors and primary informal caregivers.
作者信息
Mishra Shiraz I, Rishel Brakey Heidi, Kano Miria, Nedjat-Haiem Frances R, Sussman Andrew L
机构信息
Department of Pediatrics, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 10 5590, Albuquerque, NM 87131, USA; Department of Family and Community Medicine, University of New Mexico Health Sciences Center, 1 University of New Mexico, MSC 09 5040, Albuquerque, NM 87131, USA; University of New Mexico Comprehensive Cancer Center, University of New Mexico Health Sciences Center, 1201 Camino de Salud, Albuquerque, NM 87131, USA.
University of New Mexico Clinical and Translational Science Center, University of New Mexico Health Sciences Center, 1 University of New Mexico, Albuquerque, NM 87131, USA.
出版信息
Eur J Oncol Nurs. 2018 Feb;32:48-54. doi: 10.1016/j.ejon.2017.11.007. Epub 2017 Dec 6.
PURPOSE
There is a paucity of information regarding health related quality of life (HRQoL) of young adults (YAs) with cancer and caregivers. Therefore, we characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL.
METHODS
We conducted descriptive qualitative in-depth, semi-structured interviews with YAs receiving cancer care at an academic health center in Albuquerque, New Mexico (USA) and primary informal caregivers. The interviews, conducted from September through December 2015, focused on perspectives on the impact of the disease and its treatment in terms of physical and emotional effects, coping, and strategies to enhance HRQoL. We used an iterative thematic analysis approach to identify emergent themes and create a coding structure.
RESULTS
We reached thematic saturation after interviewing 8 YAs and 8 caregivers. YAs and caregivers discussed cancer triggered challenges such as anxiety, depression, isolation, fear, and financial hardships. YAs and caregivers coped by maintaining positive perspectives, relying on friends and family, and prayer. Caregivers discussed how expectations for and experiences of a "good day" changed depending on their loved ones' stage of cancer treatment. YAs navigated challenges by focusing on activities and thoughts that provided meaning to their lives. YAs and caregivers suggested strategies to enhance HRQoL through patient/provider communication, support services, and decision making tools as potential mechanisms for grounding patient-centered interventions to improve cancer care.
CONCLUSIONS
Implications include the development and evaluation of informational and behavioral interventions tailored and targeted to address the pragmatic needs of YAs undergoing cancer treatment and informal caregivers.
目的
关于患癌青年成人及其照料者的健康相关生活质量（HRQoL）的信息匮乏。因此，我们描述了青年成人及其照料者对于癌症及其治疗对健康相关生活质量影响的看法。
方法
我们对在美国新墨西哥州阿尔伯克基市一家学术健康中心接受癌症治疗的青年成人以及主要的非正式照料者进行了描述性定性深入半结构化访谈。访谈于2015年9月至12月进行，重点围绕疾病及其治疗在身体和情感影响、应对方式以及提高健康相关生活质量的策略等方面的影响。我们采用迭代主题分析方法来识别新出现的主题并创建编码结构。
结果
在访谈了8名青年成人和8名照料者后，我们达到了主题饱和。青年成人和照料者讨论了癌症引发的挑战，如焦虑、抑郁、孤立、恐惧和经济困难。青年成人和照料者通过保持积极的看法、依靠朋友和家人以及祈祷来应对。照料者讨论了“美好一天”的期望和体验如何根据他们所爱的人癌症治疗阶段的不同而改变。青年成人通过专注于赋予他们生活意义的活动和想法来应对挑战。青年成人和照料者建议通过患者/提供者沟通、支持服务和决策工具等策略来提高健康相关生活质量，作为将以患者为中心的干预措施落地以改善癌症护理的潜在机制。
结论
其意义包括开发和评估针对正在接受癌症治疗的青年成人和非正式照料者的实际需求量身定制和有针对性的信息和行为干预措施。
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