Background:

Parkinsonism, including Parkinson’s disease (PD) are progressive neurological conditions. As these condition progress, individuals will need more support with their care needs to maintain independent community-living. Care needs are mainly met by unpaid, informal caregivers, usually close family members or friends. Caregiver strain is thought to lead to the need for care home placement when the caregiver can no longer cope.

Objective:

To understand predictors of caregiver strain and its influence on care home placement for people with moderate to advanced Parkinsonism.

Methods:

This is a convergent mixed methods study. Quantitative data, following an adapted stress-appraisal model, were collected on caregiver profile, tasks performed and causes of caregiver strain. Semi-structured, in-depth interviews were conducted with caregivers of people with PD (PwP) who went into a care home during the study period, to develop a deeper understanding of the caregiver role and the factors influencing caregiver strain.

Results:

Quantitative data were collected from 115 patient caregiver dyads. Interviews were conducted with 10 caregivers. A model to predict caregiver strain was developed and predictors of caregiver strain were identified, such as functional disability and poor caregiver sleep.

Conclusion:

Our findings further demonstrate the complexity of carer strain. Particular dimensions are identified that need to be addressed within clinical practice to reduce carer strain and support people with Parkinsonism to remain within their own home for as long as possible.

中文翻译：

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了解帕金森症的看护者压力——一种混合方法

背景：

帕金森病，包括帕金森病 (PD) 是进行性神经系统疾病。随着这些情况的进展，个人将需要更多的支持来满足他们的护理需求，以维持独立的社区生活。护理需求主要由无偿、非正式的护理人员，通常是亲密的家庭成员或朋友来满足。当看护者无法应付时，看护者的压力被认为会导致需要安置养老院。

客观的：

了解照顾者压力的预测因素及其对中度至晚期帕金森症患者安置养老院的影响。

方法：

这是一个收敛的混合方法研究。根据适应的压力评估模型，收集有关照顾者概况、执行的任务和照顾者压力的原因的定量数据。对在研究期间进入疗养院的 PD (PwP) 患者的照护者进行了半结构化的深入访谈，以更深入地了解照护者的角色和影响照护者压力的因素。

结果：

从 115 名患者看护人中收集了定量数据。采访了 10 名护理人员。开发了一个预测照顾者压力的模型，并确定了照顾者压力的预测因素，例如功能残疾和照顾者睡眠不佳。

结论：

我们的研究结果进一步证明了照顾者压力的复杂性。确定了需要在临床实践中解决的特定方面，以减少护理人员的压力并支持帕金森症患者尽可能长时间地留在自己的家中。