Teaching carers to deliver physical therapy for the upper limb post Stroke (TAPPS): a feasibility study

RESEARCH QUESTION Is it feasible to teach unpaid carers (CarePartners) to deliver upper-limb physical therapy to improve somatosensation, range of movement and functional activity to their stroke survivor, at home? BACKGROUND In the UK, stroke is a leading cause of disability and the fourth largest cause of death, with around 100,000 new strokes occurring each year and 1.3 million people living with stroke. Stroke causes long-term upper-limb (UL) muscle weakness in 40% of stroke survivors (SSs) and somatosensory impairment in 67%, contributing to poorer rehabilitation outcomes and prognosis, increased dependence in activities of daily living, and long-term health and social care needs. Targeted regular UL therapy, involving touch, pressure, proprioception, and joint and soft tissue mobilization ( mobilization and tactile stimulation or MTS) improves post-stroke UL impairment and functional activity. However, following hospital discharge, access to ongoing therapy is limited, reducing potential for further recovery at home. Novel ways to increase access to ongoing therapy at home include teaching CarePartners to deliver it. AIMS AND OBJECTIVES Aim: train CarePartners to deliver UL MTS at home and assess feasibility of CarePartner-delivered UL MTS. Objectives: 1. Co-design with stakeholders a training programme for CarePartners to deliver UL MTS at home, competently and safely. 2. Conduct mixed-methods feasibility study of CarePartner-delivered UL MTS to determine feasibility of progressing to a full trial. METHODS Phase 1: co-design workshops with stakeholders (six physiotherapists, six SSs and six CarePartners from diverse backgrounds) to identify and agree an appropriate training programme (focus on format, timings, context, additional support) for CarePartner-delivered MTS at home. Output: CarePartner training programme, to be delivered by qualified physiotherapists in Phase 2. Phase 2: mixed-methods feasibility study, with 42 SS-CarePartner pairs recruited from stroke rehabilitation out-patients. Following training, CarePartners will deliver UL MTS daily for six weeks, at home, recording therapy frequency, duration and content, and report any adverse reactions. Regular physiotherapist visits will provide additional CarePartner support and monitor intervention fidelity and adherence. Outcomes measured at baseline, after six weeks of MTS, and at follow-up (three months) include: UL activity, function, muscle strength and sensation; SS s and CarePartner s quality of life; and CarePartner burden. Focus groups will explore participants experiences of the training, intervention, outcome measures, perceived effects and burden of intervention delivery. Therapists experiences and views will be explored in semi-structured interviews. TIMELINES FOR DELIVERY Six-monthly meetings of the study management group and public advisory group will monitor study recruitment (including attrition and completions), adverse reactions, and finances. Phase 1 will be completed in months 1–6, and Phase 2 in months 7–30. ANTICIPATED IMPACT AND DISSEMINATION Anticipated impact relates to the decision whether to progress, based on progression criteria (acceptability, achievability, fidelity, adherence, quality of life, and CarePartner burden), to a subsequent multi-centre clinical trial investigating effectiveness of CarePartner-deliverer MTS. The impact of effective CarePartner-delivered MTS could be profound in its ability to offer large-scale delivery of arm/hand rehabilitation at home. Dissemination will be through clinical networks and stroke services, at regional, national and international conferences, and high-impact stroke journals.