Polio survivors perceptions of a multi-disciplinary rehabilitation programme Disability and Rehabilitation

Abstract Purpose: 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. Methods: 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. Results: 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. Conclusions: 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. Keywords: Co-production, self- management, self-concept, pacing, post-polio syndrome, coping strategies