Reconciling traditional healthcare-related and design-based approaches to explore and enhance patient participation in spinal cord injury rehabilitation

A Spinal Cord Injury (SCI) results in partial or complete loss of sensation and/or function below the level of injury, affecting every aspect of daily life. SCI rehabilitation is a long,complex process that aims to equip patients with the skills needed for the rest of their lives. The initial aim of this study was to create more or enhanced opportunities for patient participation within this rehabilitation process, using a mixed-methods approach to explore and collaboratively shape the experiences of patients, family and healthcare professionals within it. This research began with a 12-month, in-depth contextual review of the host spinal injury unit (SIU) to identify potential opportunities for enhanced patient participation. Qualitative and ethnographic research methods, such as interviews with SIU staff and observations of rehabilitation events, were found to be crucial in generating a detailed understanding of the rehabilitation process and embedding the researcher within the unit. Design-based methods were then used to collaboratively develop the contextual review findings, including an exploratory pilot study with a group of the SIU community. From this, the Goal Planning Meeting (GPM), where patients, family and SIU staff members meet to discuss progress and set rehabilitation goals, was established as the site for intervention. A combination of observations, interviews and conversation mapping methods were used to triangulate the experiences of participants in the GPM, generating four main aims, or 'Experience Goals,' for the subsequent co-design process. From this, the researcher generated several prototype materials that aimed to support patients’ understanding of the GPM and their role within it. The prototypes were co-developed with outpatients and SIU inpatients and staff in a series of workshops with the aim of meeting these experience goals. The final phase of the study involved the implementation and mixed-methods evaluation (using observations, interviews and conversation mapping methods) of the intervention in the rehabilitation pathway of three patients. The co-developed intervention includes a second prognosis meeting, a meeting to set longterm rehabilitation goals (that address both staff and patient priorities) and simplified documentation of the Goal Planning Meeting. Although each patient engaged with it differently, evidence suggests that the intervention led to enhanced patient understanding of their rehabilitation progress, and more opportunities for staff to incorporate the patient's personal priorities into their practice and the patient’s rehabilitation pathway. This study also makes three claims with regards to designing for patient participation: 1. Designing to enhance participation in rehabilitation processes should consider the diversity of roles and perspectives involved in service encounters like the GPM 2. Designing for enhanced patient participation needs to acknowledge that participation is not a monolithic concept 3. Designing for enhanced participation requires an embedded participatory design process able to guide a progressive process of adoption and change not only with patients, but also for the key professional practices involved. In summary, this PhD study is concerned with the complimentary relationship between ‘traditional’ and ‘design-based’ research methods to collaboratively and robustly explore, communicate and positively shape the experience of group healthcare consultation events for staff and patients alike