Department of Health Sciences, Brunel University London, Uxbridge, UK.
Freelance Academic, London, UK.
Disabil Rehabil. 2023 Apr;45(8):1389-1397. doi: 10.1080/09638288.2022.2062060. Epub 2022 May 11.
To understand physiotherapy and physiotherapy services from the perspectives of adults with cerebral palsy (CP).
Twenty-two adults with CP (15 women, 7 men), from across the UK, aged between 23 and 51 years, Gross Motor Function Classification System I-V, were interviewed about their experiences of physiotherapy and physiotherapy services. Participants were recruited through advertisements placed with relevant national organisations. The interviews were transcribed and analysed according to principles of Reflective Lifeworld Research. A second analysis examined the findings in relation to Donabedian's structure-process-outcome framework for healthcare quality.
Specialist services for adults with CP were described as scarce, unknowable, complex and disconnected through the life course. Specific problems included; such as access to and organisation of services, signposting to services and access to expert advice; including a lack of attention to patients' perspectives, needs, priorities, experience and expertise; and for example the negative impact of physiotherapy service configurations on health, well-being and quality of life.
Study findings support grassroots calls to radically improve and increase physiotherapy services for adults with CP. Accessible and widely available specialist services, information and advice across the life course would do much to address unmet need. Implications for RehabilitationAdults with CP found it difficult to identify and access specialised physiotherapy services and to obtain information and advice to help them best manage their condition.Adults with CP need physiotherapy services throughout the different phases of their lives, to meet their present needs, and to anticipate and, where possible, to prevent future needs.Participants highly valued person-centred physiotherapy and we recommend this approach is adopted as the foundational philosophy guiding physiotherapy services and interventions for adults with CP.More specialist physiotherapy services are urgently needed to meet the needs of adults with CP in the UK.
从脑瘫成人的角度理解物理治疗和物理治疗服务。
22 名英国各地的脑瘫成人(女性 15 名,男性 7 名)参与了此次研究,年龄在 23 至 51 岁之间,粗大运动功能分级系统 I-V 级。他们被邀请接受关于其物理治疗和物理治疗服务经历的访谈。参与者通过与相关国家组织发布的广告招募而来。根据反思生活世界研究的原则,对访谈进行了转录和分析。第二项分析则检查了这些发现与 Donabedian 医疗保健质量的结构-过程-结果框架的关系。
脑瘫成人的专科服务被描述为稀缺、难以捉摸、复杂且在整个生命周期中彼此脱节。具体问题包括:如服务的获取和组织、服务的转介以及获取专家建议;例如缺乏对患者的观点、需求、优先事项、经验和专业知识的关注;以及例如物理治疗服务配置对健康、福祉和生活质量的负面影响。
研究结果支持基层要求,即彻底改善和增加脑瘫成人的物理治疗服务。在整个生命周期中提供便捷且广泛可用的专科服务、信息和建议,将有助于满足未满足的需求。
脑瘫成人发现难以确定和获得专门的物理治疗服务,并难以获得帮助他们最佳管理病情的信息和建议。脑瘫成人在其不同生活阶段都需要物理治疗服务,以满足其当前需求,并预测和尽可能预防未来的需求。参与者高度重视以人为本的物理治疗,我们建议采用这种方法作为指导脑瘫成人物理治疗服务和干预的基础哲学。英国迫切需要更多的专科物理治疗服务来满足脑瘫成人的需求。