Co-Designing a Patient-Facing Version of a Mental Healthcare Pathway for People Receiving Dialysis

A Community Advisory Committee comprised of nine members with lived experience of kidney failure, identified the need for a patient-facing version of a mental healthcare pathway for people receiving dialysis in Alberta, Canada. Recognizing that healthcare tools to support person-centred care practices should be available in lay language, our team (comprised of Community Advisors and healthcare clinicians and researchers) co-designed a patient-facing pathway: “Your Journey: Coping with and Adjusting to Dialysis.” The Provincial Pathways Unit provided a template for the pathway, and the content was adapted through multiple online and in-person meetings with the Community Advisors. Adaptations were informed by Community Advisors’ insights, and guided by principles of health literacy and centredness. We wrote this paper together to showcase how we worked in partnership, collaborating as a team to co-design a patient-facing version of a mental healthcare pathway for people receiving dialysis. We highlight our co-design, the processes we followed, reflections from our team members, and lessons learned regarding the language used in patient-facing tools, the value of in-person versus online meetings, and the potential barriers to co-design. Our innovative collaboration provided a solution to create a pathway as a comprehensible and accessible tool to those most impacted: people receiving life-saving dialysis who are also experiencing mental health concerns.