Thordardottir Björg, Nilsson Maria H, Iwarsson Susanne, Haak Maria
Department of Health Sciences, Faculty of Medicine, Lund University , Lund , Sweden.
Disabil Rehabil. 2014;36(26):2216-24. doi: 10.3109/09638288.2014.898807. Epub 2014 Mar 27.
The aim of this study was to improve our understanding of important aspects of participation in everyday life for people with different levels of severity of Parkinson's disease (PD).
A qualitative design was used, with empirical data obtained from focus groups. The participants had all been diagnosed with PD at least one year prior to the start of the study. Purposeful sampling was used to ensure that both sexes, with variations in age, marital status, living arrangements, education and employment, were represented. Recruitment continued until saturation was reached and resulted in 29 participants. Homogeneity within each focus group was based on self-rated PD severity (mild, moderate or severe).
The aspects that influence participation at different stages of PD are that those with PD stand out in public, as a result of disease-specific features, and that the disease is unpredictable. Planning was highlighted as a strategy that is required to support participation and cope with stress and to compensate for the fact that everyday activities demanded a great deal of time and energy.
These findings are of importance to the development of rehabilitation interventions that support people with PD in maintaining their participation in everyday life, throughout the course of the disease.
本研究旨在增进我们对帕金森病（PD）不同严重程度患者参与日常生活重要方面的理解。
采用质性设计，通过焦点小组获取实证数据。参与者在研究开始前至少已被诊断为帕金森病一年。采用目的抽样以确保纳入不同性别、年龄、婚姻状况、居住安排、教育程度和就业情况的参与者。持续招募直至饱和，最终有29名参与者。每个焦点小组内的同质性基于自我评定的帕金森病严重程度（轻度、中度或重度）。
影响帕金森病不同阶段参与度的因素包括，帕金森病患者因疾病特定特征在公共场合引人注目，且疾病具有不可预测性。规划被视为一种策略，有助于支持参与、应对压力，并弥补日常活动需要大量时间和精力这一事实。
这些发现对于开发康复干预措施具有重要意义，这些措施可在疾病全过程中支持帕金森病患者维持其对日常生活的参与度。
