Background:Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective:We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods:Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results:We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD.2) Healthcare professionals do not always know what PD really means. Most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion:These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

中文翻译：

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“我还能坚持多久？” 帕金森病姑息治疗的需求：从失去亲人的家庭照顾者的角度进行的定性研究。

背景：家庭护理人员在姑息治疗阶段为帕金森病 (PD) 患者提供大部分护理。对于许多人来说，这是一种要求很高的体验，影响了他们的生活质量。目的：我们开始绘制在姑息治疗阶段的非正式护理期间以及在他们的亲人患有 PD 去世后失去亲人的家庭护理人员的经历。方法：10名失去亲人的家庭照顾者参与了这项定性研究。进行了半结构化访谈，并使用了解释性现象学分析。结果：我们确定了四个主要主题。1) 感觉像一个专业的护理人员：在护理 PD 患者时，家庭护理人员承担了 PD 患者的许多角色和任务。2) 医疗保健专业人员并不总是知道 PD 的真正含义。大多数受访者对 PD 的知识和理解有负面体验，尤其是（执业）护士。3) 独自一人：许多受访者认为自己对亲人的照顾负有高度责任，缺乏时间和空间。在看护期间和死后都存在悲伤和内疚感。4) 与时俱进：为了提供符合患者偏好的姑息治疗并为 PD 的姑息治疗阶段做好准备，积极的姑息治疗计划被认为很重要。然而，受访者表示，这通常是不提供的。结论：这些研究结果表明，在姑息治疗阶段照顾 PD 患者对家庭照顾者来说是一项艰巨的经历。在患有 PD 的人去世前后，他们会经历多年的心理问题。提高医疗保健专业人员对家庭和失去亲人的照顾者需求的认识可能会减轻这些长期的不利影响。