Ravenek Michael, Rudman Debbie L, Jenkins Mary E, Spaulding Sandi
1 School of Occupational Therapy, Elborn College, Western University, London, ON, Canada.
2 Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
Chronic Illn. 2017 Dec;13(4):288-298. doi: 10.1177/1742395317694699. Epub 2017 Feb 20.
Objectives Individuals living with young-onset Parkinson's disease compose a rare subtype of a disease typically associated with older age. Situated within a large grounded theory study exploring information behavior, this paper describes the core category of the theory, i.e. uncertainty. Methods Data were collected with 39 individuals living with young-onset Parkinson's disease who took part in in-depth interviews, focus groups and/or an online discussion board. Fourteen autobiographies written by individuals living with young-onset Parkinson's disease were also used as data sources. Results Through experiencing young-onset Parkinson's disease, participants were confronted with uncertainty along two main lines. First, they experienced uncertainty with respect to their identities as young- and middle-aged adults, deviating from the idealized age-graded life path marked out within their socio-cultural context. Second, they experienced uncertainty with respect to their functioning, as the heterogeneous nature of Parkinson's progression meant that it would not be possible to chart how their disease would change over time. This uncertainty was associated with feelings of lost control over their lives and increased grief. Discussion With a deeper appreciation for how uncertainty is experienced in the lives of those with young-onset Parkinson's disease, health professionals may be better prepared to discuss these issues with patients and provide support and resources.
目标 早发性帕金森病患者构成了一种通常与老年相关疾病的罕见亚型。在一项探索信息行为的大型扎根理论研究中，本文描述了该理论的核心类别，即不确定性。方法 对39名早发性帕金森病患者进行了数据收集，他们参与了深度访谈、焦点小组和/或在线讨论板。14篇早发性帕金森病患者撰写的自传也被用作数据源。结果 通过经历早发性帕金森病，参与者在两条主要方面面临不确定性。首先，他们在作为中青年的身份方面经历了不确定性，偏离了他们社会文化背景中划定的理想化年龄分级生活轨迹。其次，他们在自身功能方面经历了不确定性，因为帕金森病进展的异质性意味着无法描绘出他们的疾病将如何随时间变化。这种不确定性与对自己生活失去控制的感觉和更多的悲伤情绪相关。讨论 随着对早发性帕金森病患者生活中如何体验不确定性有了更深刻的认识，卫生专业人员可能会更好地准备与患者讨论这些问题，并提供支持和资源。
