JMIR Publications

ABSTRACT

Background:

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

Objective:

To design and develop an accessible digital self-management tool for joint pain, alongside people with OA, and integrate this with an existing social network activation tool (Genie). To explore the feasibility of these linked tools for supporting the management of joint pain.

Methods:

The study was conducted in two phases; a design and development stage, and a small-scale feasibility study. The first stage followed the person-based approach, using three community focus groups (n=11) with existing research literature to establish guiding principles for the development of a new site (EMPOWER) and its integration with Genie. This site was tested and refined using think aloud interviews (n=6). In the second phase, a small-scale feasibility study was undertaken using the LifeGuide platform to record participants’ use of the tools over a one-month period. Participants (n=6) were asked to complete evaluation questionnaires on their experiences. The NASSS (non-adoption, abandonment, scale-up, spread, sustainability) framework was used to explore the sites’ feasibility.

Results:

The focus groups established guiding principles for the development of the tool. These included ensuring accessibility and relevance for all, recognising joint pain as the reason for seeking support, trust, social facilitation and goal setting. Think aloud interviews identified issues with user experience and navigation of the sites, the need for professional input in relation to referral and goal setting, confusion and tensions over the role of Genie and connection between the sites. Participants also identified that their expectation of the sites was specific to their pain-related needs. EMPOWER was accessed eighteen times, with six users registering to use the site during the feasibility study. Participants explored a variety of pages, although being active and a healthy weight were the most visited. Only one participant undertook goal setting. Genie was visited by four participants, although the option for one-to-one facilitation was not taken up.

Conclusions:

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