Abstract

Background

Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored “goodness of fit” support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.

中文翻译：

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谁来照顾失去亲人的人？全国运动神经元疾病患者家庭照顾者调查

摘要

背景

尽管运动神经元疾病 (MND) 护理人员在身体和心理上面临最大的挑战，但缺乏基于人群的研究来调查丧亲之痛、未满足的需求、支持范围以及他们对失去亲人的 MND 护理人员的帮助的影响。方法：对 2016 年、2017 年和 2018 年因 MND 失去亲友的家庭照顾者的丧亲经历进行的匿名全国人口横断面邮政和在线调查。招募是通过澳大利亚所有 MND 协会进行的。结果：收到 393 条有效回复（回复率为 31%）。失去亲人的照顾者身体 (31%) 和心理健康 (42%) 的恶化很常见。大约 40% 的人认为他们的支持需求没有得到满足。对丧亲风险高的看护人（63%）而言，认为支持不足的比例更高，并且与他们的身心健康显着恶化有关。大多数人获得了家人和朋友的支持，其次是 MND 协会、全科医生和葬礼提供者。据报道，非正式的支持是最有帮助的。专业帮助的来源最少使用，并且被认为是最没有帮助的。结论：这项研究强调需要一种新的和增强的 MND 丧亲护理方法，包括护理人员风险和需求评估，作为量身定制的“适合度”支持计划的基础。这种方法需要连续的护理、更多的资源、正式的计划和对专业人员的加强培训，以及优化社区能力。MND 协会有能力在丧亲之痛前后为受影响的家庭提供支持，但可能需要额外的培训和资源来履行这一职责。