“Six sessions is a drop in the ocean”: an exploratory study of neurological physiotherapy in idiopathic and inherited ataxias

ObjectiveAn exploratory study to examine specialist neurological physiotherapy service provision and utilisation for people with progressive ataxia.DesignQualitative study involving thematic analysis of accounts in semi-structured interviews with physiotherapists and patients.SettingPeople with ataxia and specialist neuro-rehabilitation physiotherapists in Greater Manchester, UK.Participants38 people with ataxia and 8 neurological-physiotherapists working in academic and hospital and community-based services in NHS and private settings. Recruiting physiotherapists experienced in working with the patient group was a challenge.InterventionsOne hour cross-sectional semi-structured interview at physiotherapists’ workplaces or in patients’ own homes.ResultsNeurological physiotherapy was experienced by 25 (66%) of the 38 people with ataxia. The overarching themes emerging from the analysis were ‘making a difference,’ engagement and service provision. A majority of both samples felt that services should be organised so as to provide longer term therapy and support that goes beyond short care packages followed by provision of home exercise programme. Engagement with services was linked to patient expectations, adherence and perception of outcomes. The most predominant codes in the data set were encapsulated by the theme ‘making a difference,’ which further included concerns about how to measure perceived clinical improvement (as experienced by patients) in the context of progressive decline.ConclusionsThe findings suggest a model of idealised service provision involving a holistic, open-access service including research efforts to improve the evidence base. Special attention needs to be paid to measuring improvements following therapy.