“A coalition of the willing”: experiences of co-designing an online pain management programme (iSelf-help) for people with persistent pain

Abstract

Plain English summary Persistent non-cancer pain affects one in five people globally. Māori (the Indigenous population of New Zealand) experience a higher persistent pain prevalence than non-Māori. People living with persistent pain in New Zealand experience significant challenges in accessing specialised pain services, such as long-waiting times for referral, delays in getting a persistent pain diagnosis, lack of specialised health professionals in pain management and services that do not provide culturally responsive care. In an increasingly digital world, one way of addressing such access barriers is to provide pain services remotely. Using a participatory action research (PAR) framework, we co-designed an online version of an existing hospital-based pain management programme. The PAR ‘team’ included patients living with persistent pain, who have previously completed the pain management programme and other stakeholders including pain management clinicians, health researchers, technology design experts, and a health literacy expert. The PAR ‘team’ also included two Māori researchers, and our Māori community partner who led the cultural adaptation process of the online programme with Māori community members living with persistent pain. We invited all the PAR team members asking their experiences of co-designing an online pain management programme (iSelf-help) that is culturally adapted for Māori. Our results from interviewing 12 PAR team members suggest the shared values and determination to co-design the online programme enabled team members’ journey as a coalition to be successful, however, along the way, the process was complex and challenging at times both within and between the various teams. The key factors that caused such complexity were the mismatched expectations and understandings of the project, negotiating power sharing between the various teams and establishing a common thread of knowledge. We conclude that successful co-design requires a shared commitment and responsibility as a coalition to meet the aspirations of end-users, within the limits of time and budget.

Keywords

• Chronic pain
• Co-design
• Patient engagement
• Participatory action
• Qualitative