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

Authors

Alexandra Albers, Faculty of Nursing, College of Health Sciences, University of Alberta, Edmonton (Alberta), CanadaFollow
Charlotte Berendonk, Faculty of Nursing, College of Health Sciences, University of Alberta, Edmonton (Alberta), CanadaFollow
Julie Robison, Primary Care Alberta, Provincial Pathways UnitFollow
Richard Sawatzky, School of Nursing, Trinity Western University, Langley (British-Columbia), Canada AND Centre for Advancing Health Outcomes, Providence Health Care Research Institute, Vancouver (British-Columbia), Canada; AND Sahlgrenska Academy & Centre for Person-centred Care, University of Gothenburg, Gothenburg, SwedenFollow
Loretta Lee, Patient Partner, Edmonton (Alberta), CanadaFollow
Monika Bolin, Patient Partner, Edmonton (Alberta), CanadaFollow
Jeff Costley, Patient Partner, Edmonton (Alberta), CanadaFollow
Sandy Johnstone, Patient Partner, Edmonton (Alberta), CanadaFollow
Kevin Kemp, Patient Partner, Edmonton (Alberta), CanadaFollow
Justin LeRoux, Patient Partner, Edmonton (Alberta), CanadaFollow
May Tourangeau, Patient Partner, Edmonton (Alberta), CanadaFollow
Sabiha Zaman, Patient Partner, Edmonton (Alberta), CanadaFollow
Kara Schick-Makaroff, Faculty of Nursing, College of Health Sciences, University of Alberta, Edmonton (Alberta), CanadaFollow

ORCID

Alexandra Albers: https://orcid.org/0000-0003-1847-7555

Charlotte Berendonk: https://orcid.org/0000-0003-4979-6866

Richard Sawatzky: https://orcid.org/0000-0002-8042-190X

Kara Schick-Makaroff: https://orcid.org/0000-0001-6200-3416

Abstract

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.

Recommended Citation

Albers A, Berendonk C, Robison J, Sawatzky R, Lee L, Bolin M, Costley J, Johnstone S, Kemp K, LeRoux J, Tourangeau M, Zaman S, Schick-Makaroff K. Co-Designing a Patient-Facing Version of a Mental Healthcare Pathway for People Receiving Dialysis. Patient Experience Journal. 2025; 12(3):233-245. doi: 10.35680/2372-0247.2063.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.