iSelf-Help: a co-designed, culturally appropriate, online pain management programme in Aotearoa

Abstract

Introduction: Current best practice recommends group-based pain management programmes for long-term improvements in persistent pain-related disability. However, there are barriers for people to access in-person delivered pain management programmes in Aotearoa. Aims: To develop a co-designed, culturally responsive, online group-based 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 cultural-appropriateness of iSelf-help. The PAR team included: (1) seven end-users living with persistent pain, who had previously attended an in-person delivered group pain management programme, (2) two pain management clinicians, (3) two health researchers, (4) two digital health experts, and (5) a health literacy expert. Five meetings were held with the PAR group and a Nominal Group Technique was used to rank order the preferred features of content delivery. In parallel, to ensure cultural appropriateness of iSelf-help, three focus groups (n = 15) were held with Māori (the Indigenous population of Aotearoa) living with persistent pain in collaboration with a Māori community health trust. All contents were reviewed by a Māori Health literacy expert and core contents were translated into Te Reo (Māori language). All contents were finalised by iterative discussion among the PAR team and consultation with Māori stakeholders. The preliminary version of iSelf-help was pilot tested with the PAR group participants and Māori community members living with persistent pain and their feedback was included. The iterative co-design process occurred over a period of nine months. Results: The finalised version of iSelf-help included a total of 130 resources organised in to 12 content relevant online modules plus a dedicated welcoming page and an online community forum. Each module included: short videos, animations explaining main concepts, patient stories, written content to accompany visual content, podcasts of relaxation techniques, illustrated texts, and evidence-summaries. A dedicated module of videos demonstrating cardiovascular and strengthening exercises of varying intensity was also included. Conclusions: This is the first co-created, culturally appropriate, on-line group pain management programme for people with persistent pain, developed in Aotearoa. The next step is to evaluate the clinical and cost-effectiveness of iSelf-help compared to in-person delivered pain management programme.