Pushing the limits of recovery in chronic stroke survivors: a descriptive qualitative study of users perceptions of the Queen Square Upper Limb Neurorehabilitation Programme

Abstract

INTRODUCTION: The Queen Square Upper Limb (QSUL) Neurorehabilitation Programme is a clinical service within the National Health Service in the UK that provides 90-hours of therapy over 3-weeks to stroke survivors with persistent upper limb impairment. This study aimed to explore the perceptions of participants of this programme, including clinicians, stroke survivors and caregivers. DESIGN: Descriptive qualitative. Data analysis was performed using a conventional thematic content approach to identify main themes by four researchers to avoid any potential bias or personal motivations, promoting confirmability. SETTING: Clinical outpatient neurorehabilitation service. PARTICIPANTS: Clinicians (physiotherapists, occupational therapists, rehabilitation assistants) involved in the delivery of the QSUL Programme, as well as stroke survivors and caregivers who had participated in the programme were purposively sampled. Each focus group followed a series of semi-structured, open questions that were tailored to the clinical or stroke group. One independent researcher facilitated all focus groups, which were audio-recorded and transcribed verbatim by a professional transcription agency. RESULTS: Four focus groups were completed: three including stroke survivors (n=16) and caregivers (n=2), and one including clinicians (n=11). The main stroke survivor themes related to psychosocial aspects of the programme ('you feel valued as an individual'), as well as the behavioural training provided ('gruelling, yet rewarding'). The main clinician themes also included psychosocial aspects of the programme ('patient driven ethos-no barriers, no rules') and knowledge, skills and resources of clinicians ('it is more than intensity, it is complex'). CONCLUSIONS: As an intervention, stroke survivors and clinicians consider the QSUL Programme to be both comprehensive and complex. The nature of the interventions in the programme spans psychosocial and behavioural domains. We suggest the future clinical trials of upper limb rehabilitation consider testing the efficacy of these multiple interacting components.