Department of Biomedicine and Prevention, University of Rome Tor Vergata, Rome, Italy.
Univeristy of L'Aquila.
Acta Biomed. 2020 Nov 30;91(12-S):e2020002. doi: 10.23750/abm.v91i12-S.10264.
In the advanced stages of Parkinson's Disease, patients need complex care and support, especially at home, where they often receive assistance by familial caregivers. However, caregivers may be or feel unable to cope with their role and, despite the needs of caregivers are often assessed in the literature, their opinions and feelings about these needs are not widely explored yet. This study aimed at exploring the opinions and feelings about their educational needs and role of familial caregivers of Parkinson's Disease patients.
A qualitative study was conducted from October to December 2017 in a polyclinic of central Italy. Fourteen caregivers voluntarily participated in the study; semi-structured face-to-face interviews were conducted, and audio recorded until data saturation. Two investigators reviewed the transcribed notes, created Meaning Units, Sub-categories and finally the Categories with emerged themes.
The analysis of the 14 interviews generated three categories: supportiveness of healthcare educational programs; sense of inability to manage caregiver tasks; need for interaction with other familial caregivers.
The caregivers declared their belief that healthcare educational courses can be useful in helping them live and understand the caregiving tasks and expressed their need to share their experiences with other caregivers. In fact, they often they felt abandoned and poorly trained for the patient's management at the home. The clinical practice should allow healthcare professionals to meet the training and emotional needs of caregivers and create a trust relationship with them to make caregivers skilled in caring for patients.
在帕金森病的晚期，患者需要复杂的护理和支持，特别是在家庭中，他们通常由家庭照顾者提供帮助。然而，照顾者可能会感到或觉得自己无法胜任这个角色，尽管文献中经常评估照顾者的需求，但他们对这些需求的意见和感受尚未得到广泛探讨。本研究旨在探讨帕金森病患者家庭照顾者对其教育需求和角色的意见和感受。
这是一项 2017 年 10 月至 12 月在意大利中部一家综合诊所进行的定性研究。14 名照顾者自愿参加了这项研究；进行了半结构化的面对面访谈，并对音频记录进行了转录，直到数据饱和。两名研究人员对转录笔记进行了回顾，创建了意义单位、子类别，最后是出现主题的类别。
对 14 次访谈的分析产生了三个类别：医疗教育计划的支持性；感觉无法管理照顾者任务；与其他家庭照顾者互动的需求。
照顾者表示他们相信医疗教育课程可以帮助他们生活并理解照顾任务，并表达了与其他照顾者分享经验的愿望。事实上，他们经常感到被抛弃，并且在管理患者居家方面培训不足。临床实践应该允许医疗保健专业人员满足照顾者的培训和情感需求，并与他们建立信任关系，使他们成为照顾患者的熟练者。
