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将基于网络的自我管理工具(通过网络和资源管理关节疼痛)与基于网络的社交网络支持工具(促进网络参与度)整合,用于骨关节炎相关关节疼痛患者:设计、开发与早期评估。

Integrating a Web-Based Self-Management Tool (Managing Joint Pain on the Web and Through Resources) for People With Osteoarthritis-Related Joint Pain With a Web-Based Social Network Support Tool (Generating Engagement in Network Involvement): Design, Development, and Early Evaluation.

作者信息

Clarkson Paul, Vassilev Ivaylo, Rogers Anne, Brooks Charlotte, Wilson Nicky, Lawson Jem, Adams Jo

机构信息

NIHR ARC Wessex, Centre for Sport, Exercise and Osteoarthritis Research Versus Arthritis, School of Health Sciences, University of Southampton, Southampton, United Kingdom.

Social Networks Health and Wellbeing Research Group, School of Health Sciences, University of Southampton, Southampton, United Kingdom.

出版信息

JMIR Form Res. 2020 Nov 26;4(11):e18565. doi: 10.2196/18565.

Abstract

BACKGROUND

Joint pain caused by osteoarthritis (OA) is highly prevalent and can be extremely debilitating. Programs to support self-management of joint pain can be effective; however, most programs are designed to build self-efficacy and rarely engage social networks. Digital interventions are considered acceptable by people with joint pain. However, many existing resources are not accessible for or developed alongside people with lower health literacy, which disproportionately affects people with OA.

OBJECTIVE

This study aims to design and develop an accessible digital self-management tool for people with joint pain and integrate this with an existing social network activation tool (Generating Engagement in Network Involvement [GENIE]) and to explore the feasibility of these linked tools for supporting the management of joint pain.

METHODS

The study was conducted in 2 phases: a design and development stage and a small-scale evaluation. The first phase followed the person-based approach to establish guiding principles for the development of a new site (Managing joint Pain On the Web and through Resources [EMPOWER]) and its integration with GENIE. People with joint pain were recruited from libraries, a community café, and an exercise scheme to take part in 3 focus groups. EMPOWER was tested and refined using think-aloud interviews (n=6). In the second phase, participants were recruited through the web via libraries to participate in a small-scale evaluation using the LifeGuide platform to record use over a 1-month period. Participants (n=6) were asked to complete evaluation questionnaires on their experiences. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework was used to explore the feasibility of the sites.

RESULTS

The focus groups established guiding principles for the development of the tool. These included ensuring accessibility and relevance for people with OA-related joint pain and recognizing that joint pain is the reason for seeking support, trust, social facilitation, and goal setting. Think-aloud interviews identified issues with user experience and site navigation and the need for professional input for referral and goal setting, confusion, and tensions over the role of GENIE and site connectivity. Participants expected the sites to be specific to their pain-related needs. EMPOWER was accessed 18 times; 6 users registered with the site during the evaluation study. Participants mostly explored information pages on being active and being a healthy weight. Only one participant undertook goal setting and 4 participants visited the GENIE website.

CONCLUSIONS

Using the NASSS framework, we identified the complexity associated with integrating EMPOWER and GENIE. The value proposition domain highlighted the technical and conceptual complexity associated with integrating approaches. Although identified as theoretically achievable, the integration of differing propositions may have caused cognitive and practical burdens for users. Nevertheless, we believe that both approaches have a distinct role in the self-management of joint pain.

摘要

背景

骨关节炎(OA)引起的关节疼痛非常普遍,且可能极其使人衰弱。支持关节疼痛自我管理的项目可能有效;然而,大多数项目旨在建立自我效能感,很少涉及社交网络。数字干预被关节疼痛患者认为是可以接受的。然而,许多现有资源对于健康素养较低的人来说无法获取,或者不是与他们一起开发的,这对骨关节炎患者的影响尤为严重。

目的

本研究旨在为关节疼痛患者设计并开发一种易于使用的数字自我管理工具,并将其与现有的社交网络激活工具(促进网络参与[GENIE])整合,同时探索这些关联工具在支持关节疼痛管理方面的可行性。

方法

该研究分两个阶段进行:设计与开发阶段以及小规模评估阶段。第一阶段采用以人为本的方法,为新网站(通过网络和资源管理关节疼痛[EMPOWER])的开发及其与GENIE的整合确立指导原则。从图书馆、社区咖啡馆和一项健身计划中招募关节疼痛患者,让他们参加3个焦点小组。通过出声思考访谈(n = 6)对EMPOWER进行测试和完善。在第二阶段,通过图书馆在网络上招募参与者,让他们使用LifeGuide平台参加为期1个月的小规模评估,记录使用情况。参与者(n = 6)被要求就他们的体验填写评估问卷。采用NASSS(未采用、放弃、扩大规模、传播和可持续性)框架来探索这些网站的可行性。

结果

焦点小组为该工具的开发确立了指导原则。这些原则包括确保对与OA相关的关节疼痛患者具有可及性和相关性,并认识到关节疼痛是寻求支持、信任、社交促进和设定目标的原因。出声思考访谈发现了用户体验和网站导航方面的问题,以及在转诊和目标设定、困惑以及对GENIE的作用和网站连接性的紧张关系方面需要专业意见。参与者期望这些网站能满足他们与疼痛相关的特定需求。EMPOWER被访问了18次;在评估研究期间,有6名用户在该网站注册。参与者大多浏览了关于积极活动和保持健康体重的信息页面。只有一名参与者进行了目标设定,4名参与者访问了GENIE网站。

结论

使用NASSS框架,我们确定了整合EMPOWER和GENIE的复杂性。价值主张领域突出了整合方法所涉及的技术和概念复杂性。尽管从理论上看是可行的,但不同主张的整合可能给用户带来认知和实际负担。然而,我们认为这两种方法在关节疼痛的自我管理中都有独特的作用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9a5e/7728529/c19ecc02f213/formative_v4i11e18565_fig1.jpg

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