Communication, quality of life and advance care planning for people with motor neurone disease and their caregiver.

运动神经元疾病患者及其护理人员的沟通、生活质量和预先护理计划。

• 批准号: nhmrc : GNT1133541
• 负责人: Ms Camille Paynter
• 金额: $ 10.89万
• 依托单位国家: 澳大利亚
• 项目类别: Postgraduate Scholarships
• 财政年份: 2017
• 资助国家: 澳大利亚
• 起止时间: 2017-01-01 至 无数据
• 项目状态: 已结题
• 来源: https://researchdata.edu.au/communication-quality-life-disease-caregiver/1347904
• 关键词: Communication; quality; life; advance; care

People with motor neurone disease experience devastating deterioration in movement, communication, swallowing and ultimately breathing. Research is required to determine if the advance care planning (ACP) process for people with MND is impacted by communication impairment. This study will build evidence to improve the ACP process for this vulnerable patient group. It also aims to investigate the impact communication impairment has on caregivers’ quality of life in order to improve carer support.

患有运动神经元疾病的人在运动、交流、吞咽和最终呼吸方面都会经历毁灭性的恶化。需要进行研究以确定MND患者的提前护理计划（ACP）过程是否受到沟通障碍的影响。这项研究将建立证据，以改善这一弱势患者群体的ACP过程。它还旨在调查沟通障碍对照顾者生活质量的影响，以改善照顾者的支持。