Halkett G K B, Lobb E A, Shaw T, Sinclair M M, Miller L, Hovey E, Nowak A K
School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, GPO Box U1987, Bentley, Perth, WA, 6845, Australia.
Calvary Health Care Kogarah and Cunningham Centre for Palliative Care, Sydney, New South Wales, Australia.
Support Care Cancer. 2018 Jan;26(1):275-286. doi: 10.1007/s00520-017-3846-x. Epub 2017 Aug 14.
The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress.
Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients' chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied.
The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (moderate to high) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer's working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient's life and understanding the patient's experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient's behaviour and adjusting to changes in the patient's personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels.
Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.
本研究旨在确定护理人员的需求如何随时间纵向变化，并了解未满足需求与痛苦之间的关联。
招募高级别胶质瘤（HGG）患者的家庭护理人员。护理人员在患者放化疗期间（T1）、3个月（T2）和6个月（T3）完成问卷调查，包括以下内容：痛苦温度计、一般健康问卷-12、伴侣及护理人员支持性护理（PCS）需求量表及其补充量表——服务获取需求量表和脑肿瘤特异性支持性护理需求量表。应用线性潜在增长模型。
118名护理人员完成了时间1的问卷调查；70名护理人员在时间3提供了回复。虽然需求升高（中度至高度）的平均数量随时间保持稳定，但具体需求发生了变化。最常报告的PCS需求包括护理对护理人员工作生活或日常活动的影响、寻找更方便的停车位、在不确定情况下做出生活决策、减轻患者生活中的压力以及了解患者的经历。脑肿瘤患者护理人员最常报告的独特需求是获取有关适应患者认知变化的信息。其他突出需求包括处理患者行为中的困难方面以及适应患者性格的变化，这两方面需求均随时间增加。未满足需求的数量在横断面分析中与更高的痛苦水平相关。
HGG患者的护理人员仍然极度痛苦，他们的需求随时间演变，这表明需要持续评估未满足的需求并采取干预措施来解决护理人员的心理疾病。
