Sterckx Wendy, Coolbrandt Annemarie, Clement Paul, Borgenon Sonja, Decruyenaere Marleen, De Vleeschouwer Steven, Mees Anne, Dierckx de Casterlé Bernadette
Department of General Medical Oncology, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium.
Department of General Medical Oncology, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium; Center for Health Services & Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35, 3000 Leuven, Belgium.
Eur J Oncol Nurs. 2015 Aug;19(4):383-90. doi: 10.1016/j.ejon.2015.01.003. Epub 2015 Feb 16.
Patients with high-grade glioma (HGG) face debilitating symptoms and a poor prognosis. The aims of this study were to better understand how patients with HGG experience life with a brain tumor, and to explore their professional care needs.
We conducted a qualitative research of HGG patients' experiences using semi-structured interviews and using a Grounded Theory approach. Participants were recruited during patients' hospital visits for treatment or follow-up at the University Hospitals Leuven, Belgium. Seventeen HGG patients were interviewed for the study.
Interviews showed that HGG diagnosis left patients feeling like everything was surreal. From that point on, their life was marked by loss. HGG patients sometimes felt disregarded by family caregivers, professional caregivers, and the health care system. They felt as if they were on the "sidelines" of their own life. Despite the devastating experience of living with this type of brain tumor, HGG patients also expressed great inner strength, and they tried to maintain hope. Their pivotal professional care needs concerned information, communication, and accessibility.
Diagnosis of HGG changes life drastically. Our results highlight the need for professional caregivers to be more considerate and supportive of patients with this life-changing diagnosis. Additionally, professional caregivers need to acknowledge these patients as persons and strive to empower them in order to bolster their personal strength.
高级别胶质瘤（HGG）患者面临使人衰弱的症状和不良预后。本研究的目的是更好地了解HGG患者如何体验患脑肿瘤的生活，并探索他们的专业护理需求。
我们采用半结构化访谈并运用扎根理论方法对HGG患者的经历进行了定性研究。在比利时鲁汶大学医院，于患者因治疗或随访而就诊期间招募参与者。本研究共访谈了17名HGG患者。
访谈表明，HGG诊断让患者感觉一切都很不真实。从那时起，他们的生活就被失落所笼罩。HGG患者有时会觉得被家庭护理人员、专业护理人员和医疗保健系统忽视。他们觉得自己仿佛置身于自己生活的“边缘”。尽管患有这种脑肿瘤的经历令人痛苦，但HGG患者也展现出了强大的内心力量，并且努力保持希望。他们关键的专业护理需求涉及信息、沟通和可及性。
HGG的诊断会极大地改变生活。我们的研究结果凸显了专业护理人员需要对患有这种改变生活的疾病的患者更加体贴和给予支持。此外，专业护理人员需要将这些患者视为人，并努力增强他们的能力，以强化他们的个人力量。
