Blandford Kate, Križaj Tanja
Integrated Community Neuro and Stroke Service, Wilton Health Centre, Wiltshire, United Kingdom.
Faculty of Health, School of Health Professions, University of Plymouth, Plymouth, United Kingdom.
Disabil Rehabil. 2025 Feb 17:1-10. doi: 10.1080/09638288.2025.2462200.
The purpose of this study was to gain deeper understanding of the experiences of occupational therapists and physiotherapists, working with those with atypical Parkinson's conditions, within the UK. A literature review identified that research into these roles is limited and unrepresentative.
A qualitative approach, informed by hermeneutic phenomenology was used to guide the study design. Semi-structured, online interviews, focussed on therapists' experiences of success and challenge, were completed with six physiotherapists, and three occupational therapists, experienced in working within this area of practice. The interviews were recorded and transcribed verbatim and were analysed using Braun and Clarke's reflexive thematic analysis.
Four themes were generated and discussed: (1) maintaining hope without giving false hope, (2) maintaining quality of life despite deterioration, (3) maintaining empowerment and choice despite loss of control, (4) maintaining effective working despite variable resources.
Participants' accounts of success and challenge reveal a complex landscape of tensions that must be negotiated and balanced within their practice. Insight is gained into some of the mechanisms involved in maintaining a patient's hope, their ability to participate and their sense of identity, despite the devastating losses associated with these conditions.
本研究旨在更深入地了解在英国，职业治疗师和物理治疗师与非典型帕金森病患者合作的经历。文献综述表明，针对这些角色的研究有限且缺乏代表性。
采用基于诠释现象学的定性方法指导研究设计。对六名物理治疗师和三名职业治疗师进行了半结构化在线访谈，重点围绕治疗师的成功与挑战经历展开，这些治疗师均在该实践领域有工作经验。访谈进行了录音并逐字转录，采用布劳恩和克拉克的反思性主题分析法进行分析。
生成并讨论了四个主题：（1）保持希望但不给予虚假希望；（2）尽管病情恶化仍维持生活质量；（3）尽管失去控制仍保持自主权和选择权；（4）尽管资源多变仍保持有效工作。
参与者对成功与挑战的描述揭示了一个复杂的矛盾局面，在他们的实践中必须进行协商和平衡。我们深入了解了一些在这些疾病带来巨大损失的情况下，维持患者希望、参与能力和身份感的机制。
