尤春霞 张翠萍 张明君

[摘要] 目的 研究新疆维吾尔自治区晚期癌症患者主要照顾者的照顾负荷体验，以期为提高患者和照顾者的生活质量提供参考。 方法 运用质性访谈方法，选择2017年1～4月新疆医科大学附属肿瘤医院9例晚期癌症患者的主要照顾者作为研究对象，并进行半结构式的深入访谈。 结果 运用Colaizzi分析法对访谈资料进行整理归纳分析，得出3个主题（经济压力大、精神压力大、照顾相关知识信息缺乏）和5个次主题（医疗花费过高、工作收入受到影响、担心家庭未来、心理问题突出、情感支持缺乏）。 结论 新疆维吾尔自治区晚期癌症患者主要照顾者照顾负荷情况较重，临床护士应加强照顾负荷的状况的评估，制订有针对性的干预措施，以降低照顾负荷，改善照顾者及患者的生活质量。

[关键词] 晚期癌症;主要照顾者;照顾负荷;质性研究

[中图分类号] R473.73 [文献标识码] A [文章编号] 1673-7210（2018）07（b）-0039-05

[Abstract] Objective To study the caregiver burden experience of primary caregivers of advanced cancer patients in Xinjiang Uygur Autonomous Region， so as to provide reference for improving the quality of life of patients and caregivers. Methods A semi-structured interview was conducted among caregivers of 9 patients with advanced cancer from January to April 2017 in Tumor Hospital Affiliated to Xinjiang Uygur Autonomous Region by means of qualitative interviews. Results The interview data were analyzed and summarized by Colaizzi analysis， and 3 themes were obtained including economic stress， mental stress， lack of relevant knowledge and information， and 5 sub themes were obtained including the high cost of medical work， work and income being affected， worried about the future of the family， prominent psychological problems， lack of emotional support. Conclusion Caregiver burden is heavy among primary caregivers of advanced cancer patients in Xinjiang Uygur Autonomous Region. Clinical nurses should strengthen the assessment of the status of care load， and formulate targeted interventions to reduce the burden of care and improve the quality of life of family caregivers and patients.

[Key words] Advanced cancer; Primary caregivers; Caregiver burden; Qualitative study

癌癥作为一种慢性疾病，严重威害着人类的健康与生命。癌症的诊断与治疗，对患者是一件极其痛苦的重大生活事件，对其家庭主要照顾者也是如此。尤其在癌症晚期，随着疾病并发症的增多，患者生活自理能力下降，照顾负荷加重，主要照顾者不仅要付出大量的时间、精力和金钱，还要面对随时失去亲人的痛苦，以及对家庭未来的担忧等压力[1]。这既影响着主要照顾者的身心健康和生活质量，也影响到照顾质量及患者的生存质量[2-4]。目前癌症发病率、死亡率[5]及患者5年存活率不断升高[6]，2015年预计我国癌症死亡人数约为281.4万，新发患者数约为429.2万[2]。……