Western Australian Centre for Cancer and Palliative Care, Curtin Health Innovation Research Institute, Curtin University, GPO Box U1987, Perth, WA, 6845, Australia.
BMC Palliat Care. 2012 Sep 20;11:18. doi: 10.1186/1472-684X-11-18.
Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers.
METHODS/DESIGN: This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire.
This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families.
ACTRN Trial Number: ACTRN12611000410954.
在运动神经元病（MND）患者中，开发解决心理社会和存在困扰的干预措施，或减轻 MND 家庭照顾者的负担，这在研究文献中经常被提及。尊严疗法是为了缓解生命末期的心理社会和存在困扰而开发的，已经被证明对癌症患者及其家属有益。这些结果可能不适用于 MND 患者。本研究的目的是评估尊严疗法在增强 MND 患者及其家庭照顾者的生命末期体验方面的可行性、可接受性和潜在效果。
方法/设计：这是一项横断面研究，采用单一治疗组和预-后测试设计。研究人群将包括五十名被诊断为 MND 的患者及其指定的家庭照顾者。主要的定量结果将通过基线和干预后大约一周时评估的措施收集。参与者的结果包括希望感、灵性和尊严。照顾者的结果包括照顾者负担、希望感和焦虑/抑郁。通过问卷收集对干预的反馈和满意度。
这项详细的研究将探讨尊严疗法是否有可能增强 MND 患者及其家庭照顾者的生命末期体验，并为那些被要求满足 MND 患者及其家庭的精神、存在和心理社会需求的专业人员填补空白。
ACTRN 试验编号：ACTRN12611000410954。
