Atwal Anita, Duncan Helen, Queally Claire, Cedar S H
a School of Health and Social Care , London Southbank University , London , UK.
b School of Health and Social Care , Brunel University , London , UK.
Disabil Rehabil. 2019 Jan;41(2):150-157. doi: 10.1080/09638288.2017.1381184. Epub 2017 Oct 3.
Post-polio syndrome refers to a late complication of the poliovirus infection. Management of post-polio syndrome is complex due to the extensive symptomology. European and United Kingdom guidelines have advised the use of rehabilitation programmes to manage post-polio syndrome. There is a paucity of research in relation to the effectiveness of rehabilitation interventions. The objective of this study is to explore polio survivor's perceptions of an in-patient multi-disciplinary rehabilitation programme.
Semi-structured interviews of community dwelling polio survivors who attended in-patient rehabilitation programme in the United Kingdom. Thematic analysis was used to describe and interpret interview data.
Participants' experiences were influenced by past experiences of polio and their self-concept. Participants generally had a positive experience and valued being with other polio survivors. Positive strategies, such as pacing and reflection changed their mind-sets into their lives after the programme, though they still faced challenges in daily living. Some participants supported others with post-polio syndrome after completing the programme.
Our research identified that participants experienced long term positive benefits from attending a rehabilitation programme. Strategies that users found helpful that explored the effectiveness of interventions to manage polio are not cited within a Cochrane review. If we are to recognise the lived experience and service user empowerment within a model of co- production it is essential that patient preferences are evaluated and used as evidence to justify service provision. Further research is required with polio survivors to explore how best rehabilitation programmes can adopt the principles of co-production. Implications for Rehabilitation The patients' expertise and lived experience must be at the centre of a rehabilitation programme. Strategies such as pacing and reflection are perceived as important strategies to enable self-management of polio and post-polio syndrome despite the limited evidence base to support these interventions. Polio rehabilitation programmes should not be time limited and commissioners and therapists need to ensure that follow up support is provided. When measuring outcomes patient preferences and views must be evaluated.
小儿麻痹后遗症是脊髓灰质炎病毒感染的一种晚期并发症。由于症状广泛，小儿麻痹后遗症的管理很复杂。欧洲和英国的指南建议使用康复计划来管理小儿麻痹后遗症。关于康复干预效果的研究很少。本研究的目的是探讨脊髓灰质炎幸存者对住院多学科康复计划的看法。
对在英国参加住院康复计划的社区脊髓灰质炎幸存者进行半结构化访谈。采用主题分析法描述和解释访谈数据。
参与者的经历受过去的小儿麻痹经历及其自我概念的影响。参与者总体上有积极的体验，并重视与其他脊髓灰质炎幸存者在一起。积极的策略，如调整节奏和反思，改变了他们对康复计划后生活的思维方式，尽管他们在日常生活中仍面临挑战。一些参与者在完成康复计划后帮助其他患有小儿麻痹后遗症的人。
我们的研究发现，参与者从参加康复计划中获得了长期的积极益处。Cochrane综述中未提及使用者认为有助于探索管理小儿麻痹症干预措施有效性的策略。如果我们要在共同生产模式中认识到实际经历和服务使用者赋权，那么评估患者偏好并将其用作证明服务提供合理性的证据至关重要。需要对脊髓灰质炎幸存者进行进一步研究，以探索最佳的康复计划如何采用共同生产原则。对康复的启示患者的专业知识和实际经历必须成为康复计划的核心。尽管支持这些干预措施的证据有限，但调整节奏和反思等策略被视为实现小儿麻痹症和小儿麻痹后遗症自我管理的重要策略。小儿麻痹症康复计划不应有时间限制，委托方和治疗师需要确保提供后续支持。在衡量结果时，必须评估患者的偏好和观点。
