Perry Meredith A, Devan Hemakumar, Davies Cheryl, Hempel Dagmar, Ingham Tristram, Jones Bernadette, Reid Susan, Saipe Barbara, Hale Leigh
Centre for Health, Activity, and Rehabilitation Research (CHARR), School of Physiotherapy, University of Otago, Wellington, Aotearoa, New Zealand.
Tu Kotahi Māori Asthma and Research Trust, Wellington, New Zealand.
Res Involv Engagem. 2022 Feb 21;8(1):6. doi: 10.1186/s40900-022-00339-9.
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.
To develop a co-designed, culturally responsive, online group-based pain management programme (iSelf-help) for people with persistent pain.
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.
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.
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.
当前最佳实践建议采用基于小组的疼痛管理方案，以长期改善与持续性疼痛相关的残疾状况。然而，在新西兰，人们在获取面对面提供的疼痛管理方案方面存在障碍。
为持续性疼痛患者开发一个共同设计、具有文化适应性的在线小组疼痛管理方案（iSelf-help）。
采用经过修改的参与式行动研究（PAR）框架，共同设计iSelf-help的内容和文化适宜性。PAR团队包括：（1）七名患有持续性疼痛的最终用户，他们之前参加过面对面的小组疼痛管理方案；（2）两名疼痛管理临床医生；（3）两名健康研究人员；（4）两名数字健康专家；（5）一名健康素养专家。与PAR小组举行了五次会议，并使用名义小组技术对内容交付的首选功能进行排序。同时，为确保iSelf-help的文化适宜性，与一个毛利人社区健康信托机构合作，与患有持续性疼痛的毛利人（新西兰的原住民）举行了三个焦点小组会议（n = 15）。所有内容均由一名毛利健康素养专家进行审查，核心内容被翻译成毛利语。所有内容通过PAR团队的反复讨论以及与毛利利益相关者的协商得以最终确定。iSelf-help的初步版本在PAR小组参与者以及患有持续性疼痛的毛利社区成员中进行了试点测试，并纳入了他们的反馈。反复的共同设计过程持续了九个月。
最终确定的iSelf-help版本总共包括130份资源，这些资源被组织成12个与内容相关的在线模块，外加一个专门的欢迎页面和一个在线社区论坛。每个模块包括：短视频、解释主要概念的动画、患者故事、与视觉内容配套的书面内容、放松技巧播客、图文并茂的文本以及证据摘要。还包括一个专门的视频模块，展示不同强度的心血管和强化运动。
这是在新西兰为持续性疼痛患者首次共同创建的、具有文化适宜性的在线小组疼痛管理方案。下一步是评估iSelf-help与面对面提供的疼痛管理方案相比的临床效果和成本效益。
