An exploration of the lived experience of progressive cerebellar Ataxia: An interpretative phenomenological analysis

Abstract

Background and Purpose: Progressive cerebellar ataxia is a rare neurological condition characterised by uncoordinated movement, and impaired speech articulation. Rehabilitation and physiotherapy in particular, form the cornerstone of healthcare intervention. Little qualitative research has been undertaken to understand the subjective experience of this complex condition. This study explored the experience of progressive cerebellar ataxia, physiotherapy and physiotherapy services from the perspective of people living with this condition. Method: Interpretative Phenomenological Analysis underpinned this inductive qualitative enquiry. Twelve people with a progressive cerebellar ataxia participated in semi-structured interviews. All participants had some experience of physiotherapy. Interviews were transcribed. A case by case idiographic analysis was undertaken followed by a cross case analysis. Findings: Five super-ordinate themes were identified. ‘The embodied experience of progressive cerebellar ataxia’ emphasised the foregrounding of the body, and the disruption of the skilful interaction between body and world. ‘Identity, stigma and disrupted embodiment in public spaces and places’ encapsulated how participants made sense of actual and perceived stigma and discrimination. ‘Lifeworld meets biomedicine: a complex juxtaposition’ described participants’ problematic relationships with healthcare practitioners and their disease-centric world. ‘Wresting control in the face of uncertain and changing forces’ portrayed participants’ attempts to understand and reinterpret their condition on their own terms. ‘Exercise: a multifaceted contributor to managing life with ataxia’ captured the meaning of exercise and physical activity. One over-arching theme, ‘Retaining a homelike way of being-in-the-world’, cautiously indicated that whilst participants described ‘unhomelike’ lifeworlds (uncomfortable and disturbing); they simultaneously held onto, and sometimes realised, the possibility of ‘homecoming’, for example through the generation of new modes of belonging. Conclusion: This study provided a detailed, phenomenological account of the lived experience of progressive cerebellar ataxia. New insights were developed that have the capacity to inform not only physiotherapy practice but also other healthcare disciplines. New avenues for future research were also identified.