White Dawn R, Palmieri Patrick A
College of Graduate Health Studies, A. T. Still University, Kirksville, MO, USA.
Benerd College, University of the Pacific, Stockton, CA, USA.
Int J Qual Stud Health Well-being. 2024 Dec;19(1):2341989. doi: 10.1080/17482631.2024.2341989. Epub 2024 Apr 24.
Parkinson's disease is a progressive neurodegenerative disorder. The majority of the nearly 9 million people living with Parkinson's disease are men. As such, caregiving is often assumed by wives as the disease progresses. However, there is little research about the lived experience of wives as they transition to caregivers.
To describe the lived experience of wife caregivers of male spouses living at home with Parkinson's disease.
A descriptive phenomenological study. Semi-structured interviews were recorded and transcribed for analysis in Atlas.ti using Colaizzi's method.
Thirteen women, aged 50 to 83 years, were interviewed. Five themes emerged from the analysis, (1) caregiver who? (2) taking it day by day, (3) not sure what to do next, (4) just too much, and (5) caring is your soul's growth, to support the central theme "there is no cure for caregiving."
Transitioning from wife to caregiver was a gradual but difficult process. Although the wife caregivers wanted to be part of the health care team, they remained outsiders. Clinicians need to recognize the wives as care coordinators linking medical management with home care. Policy makers need to develop reimbursement models that provide wife caregivers with support groups, education programs, and telemental health services.
帕金森病是一种进行性神经退行性疾病。近900万帕金森病患者中大多数为男性。因此，随着疾病进展，妻子常常承担起照顾责任。然而，关于妻子向照顾者角色转变的生活经历的研究却很少。
描述在家中照顾患帕金森病男性配偶的妻子的生活经历。
一项描述性现象学研究。采用半结构化访谈并录音，然后使用科莱齐方法在Atlas.ti软件中进行转录和分析。
对13名年龄在50至83岁之间的女性进行了访谈。分析得出五个主题：（1）谁来照顾？（2）日复一日，（3）不确定下一步该做什么，（4）负担过重，（5）关爱是心灵的成长，以支持核心主题“照顾没有解药”。
从妻子转变为照顾者是一个渐进但艰难的过程。尽管妻子照顾者希望成为医疗团队的一员，但她们仍然是局外人。临床医生需要将妻子视为连接医疗管理和家庭护理的护理协调员。政策制定者需要制定报销模式，为妻子照顾者提供支持小组、教育项目和远程心理健康服务。
