Abstract:

Objective　To explore the disease experiences in patients with glioma, identify the patients' illness experiences and care needs, and provide the basis for supporting patients to accept the disease and formulating targeted nursing interventions. Methods　A descriptive qualitative research approach was used. Using purposive sampling, 12 patients with glioma were selected from Henan Provincial People's Hospital for semi-structured interviews from June 2022 to April 2023. There were 7 males and 5 females, aged 31 to 69 years. The Colaizzi's 7-step analysis method was employed to identify and extract the themes. Results　Five main themes were identified from the illness experiences and needs: the urgent need for related health education, health education content (treatment measures, recurrence knowledge, postoperative rehabilitation content, healthy behaviors and daily lifestyle, and postoperative time and intensity of return to work), favoring of "Internet +" follow-up mode, desire for professional and continuous treatment and follow-up services, and importance of family or caregivers' support. Conclusions　Patients with glioma have diverse disease experiences and needs due to different disease cognition, different medical conditions, and insufficient social support. Physicians should strengthen the population's health education, improve the disease cognition, strengthen the family support, build an "Internet +" medical platform, and promote the construction of professional, personalized, and accurate treatment and follow-up systems.

Key words:

Glioma, Lived experiences, Needs, Qualitative study

摘要：

目的　深入探究神经胶质瘤患者的患病体验，了解患者患病经历及照护需求，为帮助患者接受疾病并提供针对性护理干预提供依据。方法　采用描述性质性研究，按照目的抽样法，于2022年6月至2023年4月选取河南省人民医院的12例神经胶质瘤患者（男7例，女5例，年龄31～69岁）进行半结构式访谈，并以Colaizzi 7步分析法归纳和提炼主题。结果　将患病体验及需求提炼为5个主题：获得相关健康教育需求迫切，健康教育内容（治疗措施、复发知识、术后康复内容、益于健康的行为和日常生活方式、术后回归工作时间及强度），偏向“互联网+”的随访模式，渴望专业、延续的治疗及随访服务，重视家庭或照护者的支持。结论　神经胶质瘤患者由于疾病认知水平不同、医疗条件差异、社会支持不足等原因，患病经历及需求呈多样化趋势。医护人员应加强该人群的健康教育，提升疾病认知水平，强化家庭支持，构建“互联网+”医疗平台，促进专业、个性化、精准的治疗及随访体系构建。

关键词:

神经胶质瘤, 患病经历, 需求, 质性研究