Collins Anna, Lethborg Carrie, Brand Caroline, Gold Michelle, Moore Gaye, Sundararajan Vijaya, Murphy Michael, Philip Jennifer
Centre for Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia.
BMJ Support Palliat Care. 2014 Mar;4(1):68-76. doi: 10.1136/bmjspcare-2012-000419. Epub 2013 Jun 1.
Carers of patients with high-grade primary malignant glioma (PMG) are known to face extraordinary challenges, as they care for patients with multiple profound and often devastating physical, cognitive and behavioural changes. This study aimed to understand the supportive and palliative care needs in this setting, with a particular focus upon care at the end-of-life, which has hitherto been neglected.
This prospective qualitative study undertook in-depth interviews with 23 current and bereaved carers of adults with PMG. Carers were recruited from outpatient and inpatient services of two Australian metropolitan hospitals, including neurosurgery, oncology and palliative care. Thematic analysis was conducted by three independent researchers, using methods informed by grounded theory.
Carers described significant needs in relation to three distinct domains: the challenge of caring; the lack of support available to carers and the suffering of caring. The need for care coordination was highlighted as it may enable a series of recommendations for improved care, including: navigation between health providers, individualised, staged information; routine, proactive telephone needs-assessment and emotional support; and early routine integration of palliative care services.
The results of this study shed new light on providing timely information and palliative care to support carers. We call for health services to reconsider the current medical model for this patient group, where patients are the centre of care, information and support, towards a more collaborative model which places carers and patients into a partnership.
众所周知，高级别原发性恶性胶质瘤（PMG）患者的照料者面临着巨大挑战，因为他们要照顾身体、认知和行为发生多重深刻且往往具有毁灭性变化的患者。本研究旨在了解这种情况下的支持性和姑息性护理需求，特别关注迄今为止被忽视的临终护理。
这项前瞻性定性研究对23名目前正在照料以及失去亲人的成年PMG患者的照料者进行了深入访谈。照料者从澳大利亚两家大都市医院的门诊和住院服务部门招募，包括神经外科、肿瘤科和姑息治疗科。由三名独立研究人员采用扎根理论方法进行主题分析。
照料者描述了与三个不同领域相关的重大需求：照料的挑战；照料者可获得的支持不足；以及照料带来的痛苦。护理协调的必要性得到了强调，因为它可以促成一系列改善护理的建议，包括：在医疗服务提供者之间进行协调、提供个性化的阶段性信息；定期主动进行电话需求评估和情感支持；以及早期常规整合姑息治疗服务。
本研究结果为提供及时信息和姑息治疗以支持照料者提供了新的思路。我们呼吁卫生服务机构重新考虑针对该患者群体的当前医疗模式，即以患者为护理、信息和支持的中心，转向一种更具协作性的模式，使照料者和患者建立伙伴关系。
