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头颈部癌症患儿父母的照护体验

Experience of parents with head and neck cancer who are caring for young children.

机构信息

Macmillan Clinical Nurse Specialist Head and Neck Cancer, South Eastern Health & Social Care Trust, Cancer Services, Ulster Hospital, UK.

出版信息

J Adv Nurs. 2010 Jun;66(6):1280-90. doi: 10.1111/j.1365-2648.2010.05311.x.

Abstract

AIM

This paper is a report of a study exploring the experience and support needs of parents with head and neck cancer, who are also caring for their young children.

BACKGROUND

The incidence of head and neck cancer is steadily rising in the younger age groups (under 50 years). As a direct consequence, more parents of young children are being diagnosed with this cancer.

METHODS

Using a qualitative descriptive design, 12 patients with young children under the age of 16 were interviewed during 2008. The data were analysed using cognitive mapping.

FINDINGS

At diagnosis, parents experienced the fear of missing milestones in the life of their children and fear of telling the children about their diagnosis. During treatment, parents' inevitable stays in hospital led to separation from the children and the need to prepare their children for the first hospital visit. Parents experienced many debilitating effects of treatment, which had an impact on family activities, especially those that involved eating. There was often changing roles within the family. After treatment, the experience of living with cancer for parents resulted in the desire to get back to day-to-day life. Parents had an increased appreciation of life but were also living with uncertainties. The most important support networks for parents were their spouse, family and friends.

CONCLUSION

Oncology nurses are in an excellent position to offer support and guidance to parents with cancer who have children, and should encourage them to explore with the family the best way of managing role change during treatment.

摘要

目的

本文是一项探索头颈部癌症患者(同时还需照顾年幼子女)的经历和支持需求的研究报告。

背景

头颈部癌症在年轻人群(50 岁以下)中的发病率呈稳步上升趋势。因此,越来越多的年轻子女的父母被诊断出患有这种癌症。

方法

采用定性描述设计,于 2008 年对 12 名 16 岁以下有年幼子女的患者进行了访谈。使用认知映射法对数据进行分析。

结果

在诊断时,父母担心错过孩子生命中的重要阶段,也担心告诉孩子自己的诊断。在治疗期间,父母不可避免地住院,导致与孩子分离,并且需要为孩子第一次去医院就诊做准备。父母经历了许多治疗带来的衰弱影响,这对家庭活动产生了影响,尤其是那些涉及到进食的活动。家庭内部的角色经常发生变化。治疗后,父母经历了癌症的生活,渴望恢复正常的日常生活。父母对生活有了更深的感悟,但也面临着不确定因素。父母最重要的支持网络是配偶、家人和朋友。

结论

肿瘤护士非常适合为有子女的癌症患者提供支持和指导,应鼓励他们与家人一起探讨在治疗期间管理角色变化的最佳方式。

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