“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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-021-00275-0.