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“我开始明白成为一名癌症患者意味着什么”:来自医疗专业人员癌症患者及幸存者的定性证据

'I got to understand what it means to be a cancer patient': Qualitative evidence from health professional cancer patients and survivors.

作者信息

Natuhwera Germans, Ellis Peter, Acuda Stanley Wilson, Namukwaya Elizabeth

机构信息

Hospice Africa Uganda, Kampala, Uganda.

Canterbury Christ Church University, Canterbury, UK.

出版信息

SAGE Open Med. 2022 May 18;10:20503121221095942. doi: 10.1177/20503121221095942. eCollection 2022.

Abstract

OBJECTIVE

The study sought to (1) examine healthcare professionals' (HCPs) lived experiences of cancer and (2) generate evidence to inform policy and clinical practice for cancer care.

METHODS

This was a qualitative study conducted between January and December 2020 on HCPs who were ill with, or who had survived cancer in Uganda. Purposive sampling was used. A demographic form and an open-ended topic guide were used to collect data. Face-to-face and telephone interviews were conducted in English; audio-recorded data was collected until saturation was reached. Colaizzi's framework of thematic analysis was used.

RESULTS

Eight HCP cancer patients and survivors from medical, allied health, and nursing backgrounds participated in the study. Their mean age was 56 years (29-85). Five were female. Four broad themes emerged from the interviews: (1) experience of pre-diagnosis and receiving bad news, (2) impact on self and role identity, (3) healthcare system and treatment experiences, and (4) the gaps and what should be done.

CONCLUSION

Cancer patient-hood introduces vulnerability and remarkable disruptions and suffering in nearly all domains of quality-of-life, that is, in professional identity and work, social, emotional, physical, and economic facets of life. Participants identified how they experienced a healthcare system which was costly and staffed by unmotivated staff with limited access to resources, which resulted in many unmet needs and an overall poor experience. Participants identified how, in their view, the healthcare system in Uganda needed to be better resourced, protected by policy and legislation and how cancer awareness among the population needed to be improved.

摘要

目的

本研究旨在(1)考察医疗保健专业人员(HCPs)患癌后的生活经历,以及(2)生成证据以为癌症护理的政策和临床实践提供信息。

方法

这是一项定性研究,于2020年1月至12月对乌干达身患癌症或癌症康复的医疗保健专业人员开展。采用了目的抽样法。使用人口统计学表格和开放式主题指南收集数据。用英语进行面对面和电话访谈;收集音频记录数据直至达到饱和状态。采用了科莱齐的主题分析框架。

结果

八名来自医学、联合健康和护理背景的HCP癌症患者及幸存者参与了研究。他们的平均年龄为56岁(29 - 85岁)。五名是女性。访谈中出现了四个广泛的主题:(1)诊断前及收到坏消息的经历,(2)对自我和角色认同的影响,(3)医疗保健系统及治疗经历,以及(4)差距与应对措施。

结论

患癌使患者在几乎所有生活质量领域都变得脆弱,遭受显著的干扰和痛苦,即在职业认同与工作、社会、情感、身体和经济生活方面。参与者指出了他们在医疗保健系统中的经历,该系统成本高昂,工作人员积极性不高且资源获取有限,导致许多需求未得到满足,总体体验不佳。参与者指出了他们认为乌干达的医疗保健系统需要如何获得更好的资源,如何通过政策和立法加以保障,以及民众的癌症意识需要如何提高。

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