Prado Lia, Hadley Rebecca, Rose Dawn
Department of Psychology and Sport Sciences, University of Hertfordshire, College Lane, Hatfield, Hertfordshire AB10 9AB, UK.
School of Music, Lucerne University of Applied Sciences and Arts, Zentralstrasse 18, Lucerne 6003, Switzerland.
Parkinsons Dis. 2020 Apr 9;2020:7370810. doi: 10.1155/2020/7370810. eCollection 2020.
Although many studies have shown that psychosocial interventions, such as dance classes, can improve quality of life for people with Parkinson's disease (PD): few have addressed the role of, and potential benefits to, the caregivers in such activities. This mixed methods study explored the reasons for caregiver participation in a variety of activities and considered whether participation in, or abstention from these, affected the wellbeing of the caregivers.
Transcriptions of a focus group (two people with PD, two caregivers) and eight semistructured interviews (caregivers) were analysed using Grounded Theory (GT). To test the hypotheses derived from the GT, caregivers ( = 75) completed an online survey about activities they and the person they care for participated in, alongside the PDQ-Carer questionnaire, to establish the caregiver's levels of wellbeing.
Qualitative findings suggested that caregivers tried to find a balance between caring for the person with PD and participating in activities to attend to their own needs. Reasons for participating in activities for people with PD included being able to socialise in an empathetic safe space, alongside engaging in physical activity that provided some respite distraction, such as dancing with others to music. Reasons for not participating included generating time for oneself and increasing the independence of the person with PD. Quantitative results suggested that most of the participants' wellbeing was not compromised, although this was gendered: female caregivers reported lower wellbeing scores than male caregivers. Overall, 62% of caregivers participated in joint activities. Linear regression revealed a significant relationship between nonparticipation in daily activities and stress levels for female caregivers only, whereby the more independent the person with PD was, the lower the stress of the caregiver.
This study suggests that caregivers of people with PD can find a healthy balance in terms of their own wellbeing by jointly participating in two-thirds of activities while ensuring the remaining third is time reserved for themselves.
尽管许多研究表明，诸如舞蹈课程等社会心理干预措施可以改善帕金森病（PD）患者的生活质量，但很少有研究探讨护理人员在此类活动中的作用和潜在益处。这项混合方法研究探讨了护理人员参与各种活动的原因，并考虑参与或不参与这些活动是否会影响护理人员的幸福感。
使用扎根理论（GT）分析了一个焦点小组（两名PD患者、两名护理人员）的文字记录和八次半结构化访谈（护理人员）。为了检验从GT得出的假设，护理人员（n = 75）完成了一项关于他们自己以及他们所照顾的人参与的活动的在线调查，同时完成了帕金森病护理问卷（PDQ-Carer），以确定护理人员的幸福感水平。
定性研究结果表明，护理人员试图在照顾PD患者和参与满足自身需求的活动之间找到平衡。参与针对PD患者的活动的原因包括能够在一个有同理心的安全空间中社交，以及参与一些能提供喘息和分散注意力的体育活动，比如和他人一起随着音乐跳舞。不参与的原因包括为自己争取时间以及提高PD患者的独立性。定量结果表明，大多数参与者的幸福感并未受到影响，尽管存在性别差异：女性护理人员的幸福感得分低于男性护理人员。总体而言，62%的护理人员参与了联合活动。线性回归显示，仅女性护理人员不参与日常活动与压力水平之间存在显著关系，即PD患者越独立，护理人员的压力越低。
本研究表明，PD患者的护理人员可以通过共同参与三分之二的活动，同时确保剩余三分之一的时间留给自己，在自身幸福感方面找到健康的平衡。
