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

Malcolm O Perry ,Susan Reid,Hazel K Godfrey ,Kaylee Maclean,Paulien Fa’atafa ,Tristram Ingham,Nadine Puha,Bronwyn Haines,Hemakumar Devan,Cheryl Davies,Leigh Hale,Matthew Brenycz,Barbara Saipe,Bernadette Jones,Alanna Irving,Dagmar Hempel,Siobhan Bulfin,Natalie Snaddon,Lily Morris ,Null Author_Id

doi:10.1186/s40900-022-00339-9

Abstract

IntroductionCurrent 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.AimsTo develop a co-designed, culturally responsive, online group-based pain management programme (iSelf-help) for people with persistent pain.MethodsA 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.ResultsThe 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.ConclusionsThis 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.

Highlights

Current best practice recommends group-based pain management programmes for long-term improvements in persistent pain-related disability
The participatory action research (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
We used a Nominal Group Technique, whereby PAR team members ranked their preferences on content design and delivery, until concensus was reached

Summary

Introduction

Current best practice recommends group-based pain management programmes for long-term improvements in persistent pain-related disability. In Aotearoa (an accepted Māori word to describe New Zealand—meaning land of the long white cloud), the annual prevalence of persistent non-cancer pain in the general population is 19.6% (2019) [1]. A number of systemic challenges [3] contribute to the rising economic and societal costs of persistent pain conditions. These challenges include delays to initial diagnosis, long waiting times for referral to secondary and tertiary pain services, lack of understanding and validation from healthcare professionals [3], limited resources for multidisciplinary tertiary pain services [3], and barriers for Māori [4] and other minority population groups (e.g. Pacific and Asian peoples) to receiving referrals for tertiary pain services [5]. If referred and accepted into a pain service, lack of acknowledgement of spiritual beliefs and poor clinician-patient communication were cited as barriers to optimal pain management for Māori and Pacific patients [6]

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Discussion

Conclusion