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探讨癌症患者养育未成年子女的观点:一项以家庭为中心的癌症护理体验的定性研究。

Exploring the perspectives of cancer patients parenting minor children: A qualitative study on family-centered cancer care experiences.

机构信息

Department of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Germany.

Department of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Germany.

出版信息

Patient Educ Couns. 2023 Dec;117:107989. doi: 10.1016/j.pec.2023.107989. Epub 2023 Sep 27.

Abstract

OBJECTIVES

Parents with cancer experience not only disease-related burden but also child- and family-related concerns. According to the German guidelines, all professionals working in oncology are responsible for addressing these burdens and needs and for involving the patient's relatives. This study aims to explore patients' perspectives on their experiences regarding family-centeredness in cancer care.

METHODS

We conducted interviews with 18 cancer patients parenting at least one minor child (< 18). The interviews were audio-recorded, transcribed verbatim and analyzed using qualitative content analysis.

RESULTS

Most parents reported that their healthcare professionals (HCPs) rarely or not routinely discussed family issues. There was a wide range of ways in which HCPs communicated about family issues. Parents often felt unsure about professionals' responsibilities and many of them expressed a desire for more proactive communication.

CONCLUSIONS

The findings suggest that the majority of patients have unmet needs related to comprehensive care as parents.

PRACTICE IMPLICATIONS

HCPs need to be sensitized to identify parents facing additional burdens and needs. It is essential that HCPs clarify parents' preferences regarding the extent of involvement of family issues in cancer care.

摘要

目的

癌症患者不仅承受与疾病相关的负担,还会面临与子女和家庭相关的问题。根据德国指南,所有从事肿瘤学工作的专业人员都有责任解决这些负担和需求,并让患者的亲属参与其中。本研究旨在探讨患者对癌症护理中以家庭为中心的体验的看法。

方法

我们对 18 名至少育有一名未成年子女(<18 岁)的癌症患者进行了访谈。访谈进行了录音,并逐字转录,采用定性内容分析法进行分析。

结果

大多数父母报告说,他们的医疗保健专业人员(HCP)很少或根本不例行讨论家庭问题。HCP 讨论家庭问题的方式多种多样。父母通常对专业人员的责任感到不确定,他们中的许多人表示希望更积极主动地沟通。

结论

研究结果表明,大多数患者作为父母,在综合护理方面存在未满足的需求。

实践意义

需要提高 HCP 的认识,以确定面临额外负担和需求的父母。HCP 必须明确父母对癌症护理中家庭问题参与程度的偏好。

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