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

BACKGROUND

Participatory approaches to developing health interventions with end-users are recommended to improve uptake and use. We aimed to explore the experiences of co-designing an online-delivered pain management programme (iSelf-help) for people with persistent pain.

METHODS

A modified participatory action research (PAR) framework was used to co-design contents and delivery of iSelf-help. The PAR team included: (1) a patient advisory group consisting of people living with persistent pain (n = 8), (2) pain management service clinicians (n = 2), (3) health researchers (n = 3), (4) digital health experts (n = 2), (5) a health literacy expert, and (6) two Māori health researchers and our community partner who led the cultural appropriateness of iSelf-help for Māori (the Indigenous population of New Zealand). The iSelf-help co-design processes and activities of the 'PAR' team is reported in another paper. In this paper, all PAR team members were invited to share their experiences of the co-design process. Individual interviews were held with 12 PAR team members. Interview transcripts were analysed using the General Inductive Approach.

RESULTS

Five common themes were identified from the interviews: (1) Shared understanding and values of the co-design process, (2) Mismatched expectations with content creation, (3) Flexibility to share power and decision making, (4) Common thread of knowledge, and (5) Shared determination. Sustaining these themes was an overarching theme of "A coalition of the willing".

CONCLUSIONS

PAR team members valued the shared determination and responsibility to co-design iSelf-help. They also acknowledged the complexities and challenges during the process related to mismatched expectations, power sharing and establishing a common thread of knowledge. Successful co-design requires a shared commitment and responsibility as a coalition to meet the aspirations of end-users, within the boundaries of time and budget.

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.