The purpose of this study was to understand the meanings of exercise and physiotherapy for people living with a progressive cerebellar ataxia. An interpretative phenomenological analysis was undertaken with 12 participants (4 women, 8 men) recruited via their membership of a national support group. Semistructured interviews were audiorecorded and transcribed. Data were analyzed using interpretivist methods.
Two main themes were constructed. Firstly, participants highly valued building collaborative and supportive long-term therapeutic relationships with expert physiotherapists and were not necessarily looking to improve ataxia-related impairments. Secondly, self-devised exercise conferred multiple psychosocial benefits that were largely absent from physiotherapist-prescribed home exercise programs.
People living with ataxia recounted uniquely situated and contextualized understandings of exercise and physiotherapy that may differ significantly from the meaning of these terms to physiotherapists. Special attention should be given to patients’ perspectives in order to provide services that are meaningful and valued by people living with ataxia.
Implications for Rehabilitation Physiotherapists should consider exploring the meaning of exercise and physiotherapy with individual patients to inform appropriate exercise prescription and advice. Poorly managed and inexpertly prescribed home exercise programs risk inadvertently disregarding the possible positive psychosocial effects of exercise participation and may prevent long-term engagement. To sustain long-term engagement prescribed exercises should be enjoyable, meaningful, satisfying and appropriately challenging. Physiotherapists should consider providing sustained, collaborative and flexible services.