Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.

Sandhya Seshadri, Angela Contento, Kei Sugiura, Maryann Abendroth, Zachary Macchi, Benzi M Kluger
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Abstract

Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving.

Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving.

Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16). Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes.

Results: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress. Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth.

Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.

帕金森病护理伙伴对护理工作的挑战和回报的看法》(Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving)。
背景:帕金森病(PD)的多种衰弱症状和渐进性影响着护理伙伴的生活质量。目的:了解家庭成员对其角色的看法,以及帕金森病护理的挑战和回报:采用定性描述研究设计,我们对目前和以前的帕金森病护理伙伴(n = 16)进行了半结构化访谈。我们对访谈进行了录音、去标识和逐字转录。对数据进行编码和分析,以确定主题:我们确定了 5 个主题:(a)不可预知性是护理工作中最困难的部分。很难应对不可预测的帕金森病症状的日常和长期波动;(b)疾病进展和多种症状导致护理伙伴的情绪困扰。照护者感到毫无准备,并对患者和自己的损失感到悲伤;(c)照护家庭成员并不是一种 "负担"。虽然压力很大,但护理伙伴不愿将护理与 "负担 "一词联系起来;(d)护理是一种伙伴关系。护理伙伴认为他们的角色与其说是 "给予者",不如说是疾病管理的合作伙伴;以及 (e) 护理是个人满足、快乐和成长的机会。护理被视为一种 "礼物",使护理伙伴能够表达爱并体验个人成长:尽管存在挑战,但帕金森病的护理伙伴将自己的角色视为控制疾病的 "伙伴",并在护理中找到意义和力量。强调护理的积极意义和挑战的姑息治疗方法可以为护理伙伴提供更好的支持。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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