[In Press] Chronic stroke survivors with upper limb spasticity : linking experience to the ICF

Purpose: To identify the impact of upper limb spasticity on stroke survivors by linking their shared experience to the International Classification of Functioning, Disability, and Health (ICF). Methods: Ten community dwelling adults with a chronic stroke and spasticity, who had completed an upper limb rehabilitation trial participated in semi-structured interviews. Data were analysed using content analysis and linked to the ICF Comprehensive Core Set for stroke using standard linking rules. Results: Four hundred and thirty-nine meaningful concepts eligible for linking were identified. The majority (n = 178) linked to Body Function, n = 137 to Activities and Participation, n = 115 to Environmental Factors, and n = 9 to Body Structures. Sixty-two of the 130 Comprehensive Core Set categories were used; an additional eight were required to fully represent experience. Stroke survivors with upper limb spasticity use words and discuss topics concentrated around mental functions, functions of the joints and bones, muscles and movements, carrying, moving and handling objects, support and relationships with immediate family and health professionals, products and technology, and health services. Conclusions: Half of the Comprehensive Core Set categories for stroke were relevant, but to adequately capture experience an additional eight were needed. The ICF category profile may be unique to our participants or may suggest further research is needed to determine if additions to core set categories are required.Implications for rehabilitation Our ICF mapping demonstrated that the Brief Core Set for stroke was not sufficient to capture the range of experience for stroke survivors with upper limb spasticity, instead the Comprehensive Core Set for stroke supplemented with eight clinical-cohort specific second-level-categories should be used. Our findings suggest that rehabilitation may better reflect lived experience if it focuses on Body Function (Chapters 1, 2, 4, 7), Activity and Participation (Chapters 1–9), and Environment (Chapters 1, 2, 3, 5) because Body Structure was rarely mentioned in this or previous post-stroke ICF mapping research