Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Centre of Expertise for Parkinson & Movement Disorders, Nijmegen, the Netherlands.
Radboud University Medical Center (Radboudumc), Department of Anesthesiology, Pain and Palliative Care, Nijmegen, The Netherlands.
J Parkinsons Dis. 2020;10(4):1631-1642. doi: 10.3233/JPD-191884.
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.
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.
Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.
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.
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.
在姑息治疗阶段，大多数帕金森病（PD）患者的护理工作由家庭成员承担。对许多人来说，这是一种要求很高的体验，影响了他们的生活质量。
我们旨在描绘姑息治疗阶段在非正式护理期间以及在其亲人 PD 去世后，丧亲的家庭护理人员的经历。
十名丧亲的家庭护理人员参与了这项定性研究。进行了半结构化访谈，并使用解释现象学分析执行。
我们确定了四个主要主题。1）感觉像专业护理人员：在照顾 PD 患者时，家庭护理人员承担了患者的许多角色和任务。2）医疗保健专业人员并不总是了解 PD 的真正含义：大多数受访者对 PD 的知识和理解存在负面体验，特别是（实践）护士。3）独自面对：许多受访者感到对亲人的护理负有高度责任，并且缺乏时间和空间来照顾自己。在护理期间和亲人去世后，都存在悲伤和内疚感。4）落后于时代：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，积极主动的姑息治疗规划被认为很重要。然而，受访者表示，这通常无法提供。
这些发现表明，在姑息治疗阶段照顾 PD 患者对家庭护理人员来说是一项要求很高的体验。他们在 PD 患者去世前和去世后多年都经历了心理问题。提高医疗保健专业人员对家庭和丧亲护理人员需求的认识，可能会减轻这些长期的不利影响。
