Aoun Samar M, Deas Kathleen, Howting Denise, Lee Gabriel
School of Nursing, Midwifery & Paramedicine, Curtin University, Western Australia, Australia.
St John of God Hospital, Subiaco, Western Australia, Australia.
PLoS One. 2015 Dec 17;10(12):e0145106. doi: 10.1371/journal.pone.0145106. eCollection 2015.
A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the evolving caregiver needs at different stages of the disease.
被诊断患有脑癌患者的家庭护理人员承受着巨大的负担。尽管如此，护理人员的支持需求在当前常规和以患者为中心的临床护理中往往未得到充分认识和妥善解决。护理人员支持需求评估工具（CSNAT）是一种经过验证的工具，旨在系统地识别和满足护理人员的需求[已修正]。它已在澳大利亚姑息治疗社区环境中进行试验，采用阶梯式楔形整群设计，涉及322名绝症患者的家庭护理人员。本文报道了该试验的一个子集，即29名原发性脑癌患者的护理人员，并将他们的概况和结果与其他癌症组进行比较。使用家庭护理评估问卷评估护理人员的压力，使用SF12评估护理人员的身心健康，使用关于日常生活活动支持的问卷评估护理人员的工作量。与所有其他癌症患者的护理人员相比，原发性脑癌组的护理人员压力水平显著更高，心理健康水平更低，日常生活活动工作量更高。随着时间的推移，他们的身体健康也显著恶化。行动计划方法为解决突出问题带来了切实可行的解决方案。家庭护理人员的反馈访谈产生了四个主题：脑癌护理人员极其具有挑战性的经历；CSNAT在快速变化期间的系统和实用方法；与医疗专业人员的联系，感到被认可和有力量；以及在护理过程中及时获得建议和支持保证。这项初步研究表明，CSNAT为评估脑癌患者家庭护理人员的支持需求提供了一个实用且有用的工具，并为一项更大规模的纵向研究奠定了基础，该研究能够更详细地描述疾病不同阶段护理人员不断变化的需求。
