Background

Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.

中文翻译：

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运动神经元疾病患者丧亲者的悲伤、抑郁和焦虑：一项基于人群的全国性研究。

背景

尽管运动神经元疾病 (MND) 具有创伤性和致命性，并且护理经历被描述为无情的，但人们对家庭护理人员的精神疾病和长期悲伤障碍 (PGD) 风险知之甚少。方法：澳大利亚五个 MND 协会（2019 年）分发了一份关于 2016-2018 年丧亲者的横断面调查。包括 PGD (PG-13)、焦虑、抑郁和家庭功能的验证工具。多项逻辑回归用于比较与悲伤相关的因素。发现：总共收到 393 份有效回复，回复率为 31%。ICD-11 PGD 的患病率为 9.7%；中度/重度焦虑 12.3%，中度/重度抑郁 18.5% 和 18.7% 表示家庭功能不佳。MND 护理人员的丧亲风险患病率高于一般丧亲人群，高危组为 9.6%（vs 6.4%），54% 处于中等风险（vs 35%）。当受访者有焦虑或抑郁时，PGD 组的可能性分别是其 8 或 18 倍。家庭功能不佳使 PGD 的可能性增加了四倍。PGD​​ 的其他重要预测因素是最近的丧亲（<12 个月）、是死者的配偶/伴侣、疾病旅程中的支持不足、死者年龄在 60 岁以下以及较短的护理时间（<1.5 年） ）。结论：在一个基于全国人口的大型 MND 丧亲照顾者样本中，63% 的人需要比家庭和社交网络提供的更多的丧亲支持。这是一个被忽视但病情严重的人群，需要更好的护理和临床实践。