Objectives. 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. Method. 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 (n = 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. Results. 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. Conclusion. 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.

中文翻译：

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花时间：帕金森病护理人员参与与其健康相关的活动的混合方法研究。

目标。尽管许多研究表明，舞蹈课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，但很少有人探讨护理人员在此类活动中的作用及其潜在益处。这项混合方法研究探讨了护理人员参与各种活动的原因，并考虑了参与或不参加这些活动是否会影响护理人员的福祉。方法。使用扎根理论 (GT) 分析焦点小组（两名帕金森病患者、两名护理人员）和八次半结构化访谈（护理人员）的记录。为了检验 GT 得出的假设，看护者 ( n  = 75) 完成了一项关于他们和他们所看护的人参与的活动的在线调查，以及 PDQ-看护者问卷，以确定看护者的幸福水平。结果。定性研究结果表明，护理人员试图在照顾帕金森病患者和参加满足其自身需求的活动之间找到平衡。帕金森病患者参加活动的原因包括能够在一个有同理心的安全空间中进行社交，同时进行一些可以分散注意力的体育活动，例如与他人一起随着音乐跳舞。不参与的原因包括为自己创造时间和增加帕金森病患者的独立性。定量结果表明，大多数参与者的幸福感并未受到影响，尽管这是有性别差异的：女性护理人员报告的幸福感得分低于男性护理人员。总体而言，62% 的护理人员参加了联合活动。线性回归显示，仅女性看护者不参加日常活动与压力水平之间存在显着关系，其中，PD 患者越独立，看护者的压力就越低。结论。这项研究表明，帕金森病患者的照顾者可以通过共同参与三分之二的活动，同时确保剩下的三分之一的时间留给自己，从而在自己的福祉方面找到健康的平衡。