Shining a light on the road towards conducting principle-based co-production research in rehabilitation.

Moving from participatory approaches incorporating co-design to co-production in health research involves a commitment to full engagement and partnership with people with lived experience through all stages of the research process-start to finish. However, despite the increased enthusiasm and proliferation of research that involves co-production, practice remains challenging, due in part to the lack of consensus on what constitutes co-production, a lack of guidance about the practical steps of applying this approach in respect to diverse research methods from multiple paradigms, and structural barriers within academia research landscape. To navigate the challenges in conducting co-produced research, it has been recommended that attention be paid to focusing and operationalising the underpinning principles and aspirations of co-production research, to aid translation into practice. In this article, we describe some fundamental principles essential to conducting co-production research (sharing power, relational resilience, and adopting a learning mindset) and provide tangible, practical strategies, and processes to engage these values. In doing so, we hope to support rehabilitation researchers who wish to engage in co-production to foster a more equitable, ethical, and impactful collaboration with people with lived experience and those involved in their circle of care.

A Mixed Methods Approach as a Channel to Interpret Outcomes Research and Lived Experience Enquiry of Upper Extremity Elective Surgery for Tetraplegia.

Cervical spinal cord injury (SCI) causing tetraplegia is extremely disabling. In such circumstances, restoration of upper extremity (UE) function is considered the highest priority. The advent of early nerve transfer (NT) procedures, in addition to more traditional tendon transfers (TT), warranted in-depth consideration given the time-limited nature of NT procedures. Potential surgery candidates may not yet have come to terms with the permanence of their disability. A mixed methods convergent design was utilized for concurrent analysis of the Aotearoa/New Zealand upper limb registry data from the clinical assessments of all individuals considering UE surgery, regardless of their final decision. The International Classification of Functioning, Disability and Health (ICF) taxonomy guided data interpretation during the three-phased study series. It was the integration of the findings using the Stewart Model of care drawn from palliative health that enabled the interpretation of higher order messages. It is clear the clinical assessment and selection processes in use require reconsideration given the complexities individuals face following onset of SCI. We draw attention to the higher order cognitive demands placed on individuals, the requirement for SCI peer involvement in decision making and the need for acknowledgment of interdependence as a relational construct when living with tetraplegia.

Clinical Utility of Patient-Reported Outcome Measures Used for Tendon and Nerve Transfers for Tetraplegia in New Zealand.

Purpose: This study determines the clinical utility of patient-reported outcome measures used to measure outcomes of upper extremity (UE) reconstructive procedures in individuals with tetraplegia. The patient-reported outcome measures are the Canadian Occupational Performance Measure, the Capabilities of Upper Extremity Questionnaire (CUE-Q), and the Personal Wellbeing Index. Methods: Retrospective data of 43 individuals with spinal cord injury (SCI) levels C4-C7 tetraplegia, and American Spinal Injury Association Impairment Scale grades A-D who had upper limb reconstructive surgery were reviewed. Participants were grouped according to their SCI level and resultant surgical procedures into higher SCI severity and lower SCI severity groups. Results: The mean age of participants was 26.3 years (SD 13.4; range 13-64 years). The higher-severity SCI group required elbow and hand reconstruction surgery, whereas the lower-severity group only required hand reconstruction surgery. Important differences in Canadian Occupational Performance Measure priorities were identified between the higher and lower SCI severity groups. Question redundancy was evident with the CUE-Q. The self-report Personal Wellbeing Index captures the possible impacts of improved UE function on an individual's perceived sense of personal wellbeing. Conclusions: In this patient-reported outcome measure analysis, we found that the level of impairment influences patient priorities. Functional measures ought to consider UE impairment and personal wellbeing as a construct in this population, given the demands of surgery. Type of Study/Level of Evidence: Prognostic II.