Patient-centred care and patient engagement in healthcare and health research are widely mandated by funders, health systems and institutions. Increasingly, shared decision-making (SDM) is recognised as promoting patient-centred care. We explore this relationship by studying SDM in the context of integrating novel patient-centred policies in community rehabilitation. There is little research on SDM in rehabilitation, and less so in the critical community context. Patient co-investigators led study co-design. We aimed to describe how patients and providers experience SDM at community rehabilitation sites that adopted a novel, patient-centred Rehabilitation Model of Care (RMoC). Guided by focused ethnography, we conducted focus groups and interviews. Patient and professional participants were recruited from 10 RMoC early-adopter community rehabilitation sites. Sites varied in geography, patient population and provider disciplines. Patient and community engagement researchers used a set-collect-reflect method to document patient perspectives. Researchers captured provider perspectives using a semi-structured question guide. We completed 11 focus groups and 18 interviews (n = 45 providers, n = 17 patients). We found that most early-adopter providers spoke in a shared, patient-first language that focused on patient readiness, barriers and active listening. Congruent patient perceptions reflected inclusion in decision-making, goal setting and positive relationships. Many patients queried how care would become and remain accessible before and after community rehabilitation care respectively. Remaining connected while in the community was described as important to patients. Providers identified barriers like time, team dynamics and lack of clarity on the RMoC aims, which challenged the initiative's long-term sustainability. Policy innovations can promote SDM and communication through multiple strategies and training to facilitate candid, encouraging conversations. Sustainability of SDM gains is paramount. Most providers moved beyond tokenistic engagement, but competing responsibilities and team member resistance could thwart continuity. Further research is needed to empirically assess respectful and compassionate communication and SDM in community rehabilitation long term.
Keywords: co-design; communication; community rehabilitation; model of care; patient-centred care; shared decision-making.
© 2021 John Wiley & Sons Ltd.