Coolbrandt Annemarie, Sterckx Wendy, Clement Paul, Borgenon Sonja, Decruyenaere Marleen, de Vleeschouwer Steven, Mees Anne, Dierckx de Casterlé Bernadette
Author affiliations: Department of General Medical Oncology, University Hospitals Leuven (Ms Coolbrandt, Ms Sterckx, Dr Clement, Ms Borgenon, Dr Decruyenaere, Ms Mees); Center for Health Services & Nursing Research, Katholieke Universiteit Leuven (Ms Coolbrandt, Dr Dierckx de Casterlé); and Department of Neurosurgery, University Hospitals Leuven (Dr de Vleeschouwer), Belgium.
Cancer Nurs. 2015 Sep-Oct;38(5):406-13. doi: 10.1097/NCC.0000000000000216.
The poor prognosis and disabling symptoms of a high-grade glioma (HGG) affect not only the patient but place high demands on family caregivers.
The objective of this study was to explore the experience of family caregivers of patients with HGG and their needs related to professional care.
A qualitative research using semistructured interviews was conducted. Sixteen family caregivers of patients with an HGG who were treated or in follow-up at a Belgian hospital were interviewed.
Family caregivers reported experiencing loss of their old life and the patient's old self. They were saddened to see the patient's disabilities and the change in their relationship, which in turn contributed to feelings of loneliness. At the same time, they reported a strong commitment and determination to provide the patient with the best possible care. Many, however, felt unprepared to do so, and they reported feeling insecure. Caregivers expressed the need for information and for consideration and support.
The diagnosis of an HGG is disruptive to the life of family caregivers. They strongly commit but at the same time struggle to care for the patient.
Professional caregivers should be aware of the subtle balance between family caregivers' wish to care and the burden of caregiving. Professional caregivers can be of great value to family caregivers by providing guidance and assistance for this new caregiving role while being considerate of their commitment and their grief.
高级别胶质瘤（HGG）预后不佳且症状致残，不仅影响患者，也对家庭照顾者提出了很高要求。
本研究旨在探讨HGG患者家庭照顾者的经历及其与专业护理相关的需求。
采用半结构式访谈进行定性研究。对比利时一家医院接受治疗或随访的16名HGG患者的家庭照顾者进行了访谈。
家庭照顾者报告称经历了原有生活和患者过去自我的丧失。看到患者的残疾以及他们关系的变化让他们感到悲伤，这反过来又导致了孤独感。与此同时，他们报告称有强烈的意愿和决心为患者提供尽可能好的护理。然而，许多人觉得没有做好这样做的准备，并且表示感到不安。照顾者表达了对信息以及体贴和支持的需求。
HGG的诊断扰乱了家庭照顾者的生活。他们坚定地承担责任，但同时在照顾患者方面也面临困难。
专业照顾者应意识到家庭照顾者照顾意愿与照顾负担之间的微妙平衡。通过为这个新的照顾角色提供指导和帮助，同时体谅他们的付出和悲痛，专业照顾者对家庭照顾者可能具有重要价值。
