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.

Attending to Marginalization in The Chronic Pain Literature: A Scoping Review

“… 51 In the three studies that focused on chronic pain among Indigenous Peoples, emphasis was on the endorsement of traditional health practices within treatment programs 53 and their placement within broader contexts of colonization, 54 as well as the development of a culturally responsive online pain management program. 55 Lastly, within the six studies that focused on chronic pain among people of color, some of the findings assessed the multiple dimensions of racialized discrimination 58 and highlighted the importance of culturally relevant online health education interventions, 42 culturally adapted physiotherapy, 57 and holistic interventions for addressing pain in light of the role of adversity on pain experiences. 45 …”

“…A large portion of the studies did not specify a theory or guiding conceptual framework ( n = 28, 41.7%). Of those studies that used a framework ( n = 39, 58.2%), examples include Black feminist thought and critical arts-based inquiry, 35 participatory action research, 55 Gadamerian philosophical hermeneutics, 36 two nested hierarchical models (Bronfenbrenner’s bioecological model and social ecological model), 16 the National Institute on Aging Health Disparities Research Framework, 31 Newman’s theory, 48 the sociology of illness experience, 60 Rhodes’ risk environment framework, 61 Bronfenbrenner’s process–person–context–time model, 46 Neuman’s systems model, 62 the life course perspective, 45 and the biopsychosocial model. 28 , 30 , 32 , 43 , 63 , 64 We noted that studies that drew on theory offered more fulsome understandings of and approaches to marginalization, which sheds light on the structures underpinning aspects of chronic pain experiences among marginalized groups.…”

“…They paid specific attention to health literacy and empowerment, which highlights its feasibility and impact and the need for such interventions. Lastly, Perry et al 55 outlined their modified participatory action research framework in the development of a culturally relevant online pain management program with Māori in Aotearoa (New Zealand). Through this combined work, readers are made aware of how and in what ways communities can better understand and manage their chronic pain.…”

The lived experience of chronic pain for Māori: how can this inform service delivery and clinical practice? A systematic review and qualitative synthesis

“…Recent work has provided initial validation of a verbal and visual tool as a culturally appropriate and meaningful assessment instrument for Māori experiencing chronic pain, 23 and also supports recent adaptations to traditional pain management programmes and resources. 24 In other areas of health, culturally appropriate measures that have been designed for Māori include Hua Oranga (a measure of mental health outcomes), 25 Te Waka Kuaka (a needs assessment tool for traumatic brain injury) 26 and Mahi Oranga (a measure of occupational health). 27 Therefore, future research and funding should support the ongoing development of culturally appropriate and holistic pain assessment tools and treatments or work on adapting other relevant measures to be pain focussed.…”

The Pain Medicine Curriculum Framework-structured integration of pain medicine education into the medical curriculum

“…It affirms the value of building caring and inclusive learning communities. Studies have shown the need for culturally responsive pain management resources for people with persistent pain in New Zealand ( 201 , 209 ). The pain medicine curriculum would need to be flexible in design for it to be incorporated into the diverse landscape of medical education in Australia and New Zealand.…”