德国基于家庭的姑息治疗中照顾者暴露于危急事件和痛苦：使用有濒死体验的压力性照顾者成人反应量表（SCARED）的横断面研究。
Caregiver exposure to critical events and distress in home-based palliative care in Germany a cross-sectional study using the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) scale.
机构信息
Research group "FamiLe - Family health in the life course", Department of Nursing Science, Witten/Herdecke University, Witten, Germany.
Department of Nursing Science, Witten/Herdecke University, Witten, Germany.
出版信息
BMC Palliat Care. 2019 Jan 24;18(1):9. doi: 10.1186/s12904-019-0395-8.
BACKGROUND
Lay family caregivers of patients receiving palliative care often confront stressful situations in the care of their loved ones. This is particularly true for families in the home-based palliative care settings, where the family caregivers are responsible for a substantial amount of the patient's care. Yet, to our knowledge, no study to date has examined the family caregivers' exposure to critical events and distress with home-based palliative care has been reported from Germany. Therefore, we attempt to assess family caregiver exposure to the dying patient's critical health events and relate that to the caregiver's own psychological distress to examine associations with general health within a home-based palliative care situation in Germany.
METHODS
A cross-sectional study was conducted among 106 family caregivers with home-based palliative care in the Federal State of North Rhine Westphalia, Germany. We administered the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale. Descriptive statistics and linear regression models relating general health (SF-36) were used to analyze the data.
RESULTS
The frequency of the caregiver's exposure, or witness of, critical health events of the patient ranged from 95.2% "pain/discomfort" to 20.8% "family caregiver thought patient was dead". The highest distress scores assessing fear and helpfulness were associated with "family caregiver felt patient had enough'" and "family caregiver thought patient was dead". Linear regression analyses revealed significant inverse associations between SCARED critical health event exposure frequency (beta = .408, p = .025) and total score (beta = .377, p = .007) with general health in family caregivers.
CONCLUSIONS
Family caregivers with home-based palliative care in Germany frequently experience exposure to a large number of critical health events in caring for their family members who are terminally ill. These exposures are associated with the family caregiver's degree of fear and helplessness and are associated with their worse general health. Thus the SCARED Scale, which is brief and easy to administer, appears able to identify these potentially upsetting critical health events among family caregivers of palliative care patients receiving care at home. Because it identified commonly encountered critical events in these patients and related them to adverse general health of family caregivers, the SCARED may add to clinically useful screens to identify family caregivers who may be struggling.
背景
接受姑息治疗的患者的非专业家庭护理人员在护理亲人时经常面临压力。对于家庭姑息护理环境中的家庭来说，这种情况尤其如此，因为家庭护理人员负责患者的大部分护理工作。然而，据我们所知，迄今为止，德国还没有报道过家庭护理人员在家中接受姑息治疗时所面临的危急情况和痛苦。因此，我们试图评估家庭护理人员接触临终患者危急健康事件的情况，并将其与护理人员自身的心理困扰联系起来，以检查与德国家庭姑息护理环境中的一般健康状况的关联。
方法
在德国北莱茵-威斯特法伦州，对 106 名接受家庭姑息护理的家庭护理人员进行了横断面研究。我们使用了应激性护理成人对濒死体验的反应量表（SCARED）。使用描述性统计和与一般健康（SF-36）相关的线性回归模型来分析数据。
结果
护理人员接触或见证患者危急健康事件的频率从 95.2%的“疼痛/不适”到 20.8%的“护理人员认为患者已经死亡”不等。评估恐惧和帮助程度的最高困扰评分与“护理人员认为患者有足够的”和“护理人员认为患者已经死亡”有关。线性回归分析显示，SCARED 中与危急健康事件接触频率（β=0.408，p=0.025）和总分（β=0.377，p=0.007）显著负相关与家庭护理人员的一般健康状况。
结论
在德国接受家庭姑息护理的家庭护理人员在护理临终患者时经常经历大量危急健康事件的暴露。这些暴露与家庭护理人员的恐惧和无助程度有关，并与他们较差的一般健康状况有关。因此，SCARED 量表简短易用，似乎能够识别接受家庭姑息治疗的患者的这些潜在令人不安的危急健康事件。由于它识别了这些患者常见的危急事件，并将其与家庭护理人员的不良一般健康状况联系起来，因此 SCARED 可能会增加有助于识别可能正在苦苦挣扎的家庭护理人员的临床有用筛查。
Zotero 插件