Department of Nursing and Midwifery, Faculty of Education and Health Sciences, Health Research Institute, Ageing Research Centre, University of Limerick, Limerick, Ireland.
University Hospital Limerick, Limerick, Ireland.
BMC Neurol. 2024 Aug 8;24(1):275. doi: 10.1186/s12883-024-03769-y.
Parkinson's disease is incurable, and the rate of progression varies meaning that people face a long future with an unpredictable condition that can significantly influence their quality of life. To date, much of the international research has focused on measuring and describing quality of life in Parkinson's from a quantitative perspective. Given its multidimensional nature, the present study aims to explore the concept using a qualitative approach so factors influencing self-reported quality of life can be understood in greater depth.
Using a qualitative descriptive approach, people with Parkinson's disease who were survey participants in the first phase of a mixed methods study exploring factors influencing health-related quality of life were invited to participate in semi-structured interviews. Eighteen participants with high (n = 6), average (n = 6), and low (n = 6) health-related quality of life (PDQ-39 SI scores) were purposively invited to participate in this study. Audio recordings were transcribed and thematically analysed using Braun and Clarke's steps (familiarisation, generating initial codes, searching for themes, reviewing, defining, naming themes, and producing the report).
Thematic analysis revealed four overarching themes; 'Living an interrupted life,' 'Striving for 'I' in independence,' 'Unravelling identities, roles, and relationships' and 'Reconfiguring life'. These themes illuminated participants' experiences of living with Parkinson's disease and what influenced their overall quality of life.
These findings add to the international literature by helping to achieve a deeper understanding of what it means to live with Parkinson's disease and how it influences quality of life. Participants experienced a range of fluctuating, and interconnected motor and non-motor symptoms. This finding draws attention to the impact of the often-unpredictable nature of the condition on the physical, functional, psychological, social, and spiritual dimensions of life. Quality of life was positively influenced by perceptions of independence and negative feelings of dependence. Being independent was associated with freedom to plan, autonomy of choice, and freedom from feeling stressed, strained, or fearful. Having a positive outlook, using problem-focused strategies, and participating in hobbies, holidays, work, and involvement in local community committees were perceived positively across interviews as accentuating social dimensions of life. Resourcing self-management strategies, advanced nursing roles, and developing personalised models of community support may assist healthcare professionals in meeting the unique needs of people with Parkinson's disease thereby supporting quality of life.
帕金森病是一种无法治愈的疾病，其进展速度不一，这意味着患者将面临一个充满不确定性的漫长未来，这种情况会极大地影响他们的生活质量。迄今为止，国际上的大部分研究都集中在从定量角度测量和描述帕金森病患者的生活质量。鉴于其多维性质，本研究旨在采用定性方法探讨这一概念，以便更深入地了解影响自我报告生活质量的因素。
采用定性描述方法，邀请参与一项混合方法研究第一阶段的帕金森病患者（该研究旨在探讨影响健康相关生活质量的因素）参加半结构式访谈。本研究有目的邀请了健康相关生活质量较高（PDQ-39 SI 评分高，n=6）、中等（PDQ-39 SI 评分中，n=6）和较低（PDQ-39 SI 评分低，n=6）的 18 名参与者参加这项研究。对音频记录进行转录，并使用 Braun 和 Clarke 的步骤（熟悉、生成初始代码、搜索主题、审查、定义、命名主题和生成报告）进行主题分析。
主题分析揭示了四个总体主题：“过着被打断的生活”、“为独立的‘我’而奋斗”、“揭开身份、角色和关系的面纱”和“重新配置生活”。这些主题阐明了参与者的帕金森病生活体验以及影响他们整体生活质量的因素。
这些发现通过帮助我们更深入地理解患有帕金森病意味着什么以及它如何影响生活质量，补充了国际文献。参与者经历了一系列波动且相互关联的运动和非运动症状。这一发现引起了人们对这种疾病经常不可预测的性质对生活的身体、功能、心理、社会和精神层面的影响的关注。生活质量受到独立感的积极影响和对依赖的负面感受的影响。独立与计划的自由、选择的自主权以及避免感到紧张、疲惫或恐惧有关。在整个访谈过程中，积极的人生观、使用以问题为导向的策略以及参与业余爱好、度假、工作和参与当地社区委员会被视为对生活的社会层面有积极影响。资源自我管理策略、高级护理角色以及开发个性化社区支持模式可能有助于医疗保健专业人员满足帕金森病患者的独特需求，从而支持生活质量。
