Narratives of illness and recovery: (re)constructing continuity in life after stroke

Stroke is a serious illness commonly affecting arm and hand function. Given the beneficial effects of therapy, many stroke survivors participate in rehabilitation as part of their recovery. Task-specific training is one type of rehabilitative therapy involving high intensity repetitive activity practice, designed to improve upper limb function after stroke. This qualitative study was embedded within a multi-centre randomised controlled trial (RCT) known as Task-AT Home, which investigated whether task-specific training was more effective than usual care in improving upper limb function following stroke. This qualitative study explored the experiences of stroke survivors, caregivers and therapists following their participation in the therapy delivered through Task-AT Home. Employing a longitudinal study design and narrative inquiry methodology, eight stroke survivors, three caregivers and four therapists participated in two separate in-depth interviews. Data were analysed using two distinct but complementary methods, where a narrative analysis focussed on the uniqueness of individual stories and a paradigmatic analysis of narratives allowed for construction of themes within and across the data. The narrative analysis resulted in a collection of stroke survivor, caregiver and therapist stories, which provided rich insights and empathic understanding of the complexity of therapeutic participatory experiences. The paradigmatic analysis of narratives generated the construction of an over-arching theme entitled ‘(re)constructing continuity in life after stroke’, a process driven by two main themes; the desire ‘to be me again’, supported by ‘therapy matters’. Study findings suggest therapeutic participation was motivated by an anticipated return to normality, perceived achievable through adaptations to behaviours, actions and beliefs, impacted by personal, relational, environmental, societal and temporal influences. Having recognised the meaning of therapy amidst the (re)construction of life after stroke, study findings further understandings of stroke survivor, caregiver and therapist experience by providing insight into how therapy was perceived and managed and identifying factors supporting and/or hindering participatory efforts.