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

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 Maori (the Indigenous population of Aotearoa) living with persistent pain in collaboration with a Maori community health trust. All contents were reviewed by a Maori Health literacy expert and core contents were translated into Te Reo (Maori language). All contents were finalised by iterative discussion among the PAR team and consultation with Maori stakeholders. The preliminary version of iSelf-help was pilot tested with the PAR group participants and Maori 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.

Pain management programmes delivered in a group format are best practice to support people living with persistent non-cancer pain to live well. Some people can find accessing these programmes hard due to lack of referral, transportation costs and lack of trained health professionals. Further, people from Indigenous and non-Western backgrounds are poorly represented in these programmes despite having a high prevalence of persistent pain. One way of improving access is delivering services via technology. We aimed to co-design an online version of an existing hospital-based pain management programme (iSelf-help) and to ensure cultural appropriateness of the iSelf-help for Maori. Maori are the Indigenous population of Aotearoa (an accepted Maori word to describe New Zealand). We used a modified participatory action research (PAR) framework for our co-design process. This framework actively encouraged people with lived experience of pain and community partners to have a voice in the content design. The PAR team included: (1) seven end-users living with persistent pain, who had previously attended hospital-based 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 team. We used a Nominal Group Technique, whereby PAR team members ranked their preferences on content design and delivery, until concensus was reached. In parallel, three focus groups (n = 15) were held with Maori living with persistent pain in collaboration with a Maori community health trust. All contents were reviewed by a Maori Health literacy expert and core contents were translated into Te Reo (Maori language). The finalised version of iSelf-help included 130 resources, tested for accessibility, organised in to 12 online modules plus a dedicated welcoming page and an online community forum. Each module included: short videos, animations, patient stories, podcasts of relaxation techniques, illustrated texts, and evidence-summaries. This is the first co-created, culturally appropriate, on-line group pain management programme for people with persistent pain, developed in Aotearoa. We are currently evaluating if iSelf-help is acceptable to users, and clinically and cost effective as compared to the hospital-based pain management programme.

Clinical and cost-effectiveness of an online-delivered group-based pain management programme in improving pain-related disability for people with persistent pain-protocol for a non-inferiority randomised controlled trial (iSelf-help trial).

INTRODUCTION: Persistent non-cancer pain affects one in five adults and is more common in Maori-the Indigenous population of New Zealand (NZ), adults over 65 years, and people living in areas of high deprivation. Despite the evidence supporting multidisciplinary pain management programmes (PMPs), access to PMPs is poor due to long waiting lists. Although online-delivered PMPs enhance access, none have been codesigned with patients or compared with group-based, in-person PMPs. This non-inferiority trial aims to evaluate the clinical and cost-effectiveness of a cocreated, culturally appropriate, online-delivered PMP (iSelf-help) compared with in-person PMP in reducing pain-related disability. METHODS AND ANALYSIS: Mixed-methods, using a modified participatory action research (PAR) framework, involving three phases. Phase I involved cocreation and cultural appropriateness of iSelf-help by PAR team members. Phase II: The proposed iSelf-help trial is a pragmatic, multicentred, assessor-blinded, two-arm, parallel group, non-inferiority randomised controlled trial. Adults (n=180, age ≥18 years) with persistent non-cancer pain eligible for a PMP will be recruited and block randomised (with equal probabilities) to intervention (iSelf-help) and control groups (in-person PMP). The iSelf-help participants will participate in two 60-minute video-conferencing sessions weekly for 12 weeks with access to cocreated resources via smartphone application and a password-protected website. The control participants will receive group-based, in-person delivered PMP. Primary outcome is pain-related disability assessed via modified Roland Morris Disability Questionnaire at 6 months post intervention. Secondary outcomes include anxiety, depression, stress, pain severity, quality of life, acceptance, self-efficacy, catastrophising and fear avoidance. Data will be collected at baseline, after the 12-week intervention, and at 3 and 6 months post intervention. We will conduct economic analyses and mixed-method process evaluations (Phase IIA). ETHICS AND DISSEMINATION: The Health and Disability Ethics Committee approved the study protocol (HDEC18/CEN/162). Phase III involves dissemination of findings guided by the PAR team as outcomes become apparent. TRIAL REGISTRATION NUMBER: ACTRN 12619000771156.

Current practices of health care providers in recommending online resources for chronic pain self-management.

PURPOSE: Online health resources (websites, apps and social media) may be an adjunct to provide self-management support for people with persistent or chronic pain. Endorsement of online health resources by health care providers is crucial for uptake by end-users. The aim of this study was to investigate the current practices of New Zealand (NZ) health care providers in recommending online resources for persistent pain management, and to identify what factors predict health care providers' recommendations and to explore the common concerns. METHODS: An online survey of NZ health care providers (ie, chiropractors, general practitioners, nurses, occupational therapists, osteopaths, physiotherapists, psychologists, specialist consultants, and social workers) involved in the management of persistent pain was conducted. The recruitment strategy was tailored to each occupation via occupation-specific professional organizations, and by approaching multidisciplinary professional organizations. RESULTS: Data from 213 health care providers were used in the final analysis. Most of the health care providers were physiotherapists (n=71), followed by chiropractors (n=39) and general practitioners (n=31). Fifty three percent (111/210) of health care providers reported currently recommending online resources. A multivariate logistic regression model showed that specialist interest in treating pain (OR=3.84; 95% CI: 1.66, 8.87; P=0.002), and level of confidence in recommending online resources (OR=1.05; CI: 1.04, 1.07; P<0.001), positively influenced recommending online resources. The majority of the health care providers (65%, 138/213) were concerned about the safety issues related to the risk of patients misinterpreting online information and to the lack of evidence-based information. CONCLUSION: Half of the health care providers surveyed reported recommending online resources, which may suggest limited confidence in recommending, or knowledge of, existing online resources for persistent pain management. Ongoing education for health care providers on evidence-based online resources is required to recommend online resources as a self-management support tool for people with persistent pain.

What Works and Does Not Work in a Self-Management Intervention for People With Chronic Pain? Qualitative Systematic Review and Meta-Synthesis.

Background: Self-management interventions fostering self-efficacy improve the well-being of people with chronic pain. Purpose: The purpose of this study was to synthesize the enablers (what works) and barriers (what does not) of incorporating self-management strategies for people in everyday life after completion of a pain self-management intervention. Data Sources: Major electronic databases (MEDLINE, AMED, PsycINFO, Cochrane Library, PubMed, CINAHL, Scopus, and Google Scholar) were searched from inception to July 2016. Study Selection: Study selection included qualitative and mixed-method studies that explored the perceptions of individuals with chronic pain after completion of a self-management intervention. Data Extraction: A thematic analysis approach was used to synthesize the review findings, and a Confidence in the Evidence from Reviews of Qualitative Research (CERQual) Approach was used to assess the level of confidence. Data Synthesis: Thirty-three studies with 512 participants were included. Enablers to self-management included self-discovery-the ability to distinguish self (ie, body, thoughts, and feelings) from pain; feeling empowered by incorporating self-management strategies into practice; and supportive ambience via collaborative relationships with clinicians and support from family and friends. Barriers to self-management included difficulty with sustaining motivation for pain self-management; distress experienced from ongoing pain, anxiety, and depression; and unsupportive relationships with clinicians, family, and friends. Limitations: This review only included interventions that involved at least 4 self-management skills; thus, informative studies may have been missed. The follow-up period varied from immediately after the intervention to 72 months following the intervention; therefore, it is uncertain which of the key enablers and barriers were most influential long term. Only articles published in the English language were included; studies conducted in low- and middle-income countries could not be located. Conclusions: The sustained effort to self-manage chronic pain could be exhausting, and motivation could wane over time following intervention. Providing intermittent support in the form of booster sessions and peer support groups may be important. Person-centered care via shared decision making and guided problem solving is essential to facilitating ongoing self-management.