Investigating changes in quality-of-life after high-dose high-intensity upper limb rehabilitation in chronic stroke survivors: A mixed-methods analysis of the Queen Square Programme

ObjectiveTo evaluate changes in quality-of-life and explore psychosocial influences on social participation and recovery in chronic stroke survivors following intensive upper limb neurorehabilitation.DesignMixed-methods design with quantitative (pre-post design with follow-up) and qualitative (semi-structured interview) phases.SettingThree-week Queen Square upper limb neurorehabilitation programme.Participants65 stroke survivors who participated in the programme from July 2016 to March 2018.Main measuresStroke Impact Scale (3.0) (SIS) and Action Research Arm Test, collected on admission, discharge, 6-week and 6-month follow-up (n = 65). Beliefs and psychosocial factors influencing quality-of-life were investigated through thematic analysis of semi-structured interviews in two subgroups, based whether the SIS-participation domain change from admission to follow-up was high (> 20, n = 5) or low (<-24, n = 5).ResultsSeven out of eight SIS domains, overall self-rated recovery (p < 0.001) and Action Research Arm Test (p < 0.001) improved from admission to discharge. The emotion domain improved from admission to discharge (p < 0.001) and reduced from discharge to 6-month follow-up (p < 0.001). Interviews highlighted four key psychosocial themes with contrasting positive and negative perspectives between higher change and lower change groups; themes 'hidden negative effects' and 'loneliness' were evident in the lower change group and 'getting on with my life' in the higher change group.ConclusionThe Queen Square upper limb neurorehabilitation programme led to measurable therapeutic benefits on physical and non-physical quality-of-life outcomes. However, the lack of sustained improvement in self-reported emotion contrasts with the clear benefits in other domains. This indicates a need for ongoing psychosocial support for some stroke survivors, supported by the qualitative findings.