JMIR Publications

ABSTRACT

Background:

Joint pain caused by osteoarthritis 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 self-efficacy and rarely are social networks engaged. 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:

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 evaluation. The first phase followed the person-based approach to establish guiding principles linked to behaviour change theory for the development of a new site (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 three focus groups. EMPOWER was tested and refined using think aloud interviews (n=6) with participants recruited from the focus groups. In the second phase, participants were recruited online via libraries to take part in a small-scale evaluation using the LifeGuide platform to record usage 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 tool’s development. These included ensuring accessibility and relevance for people with OA related joint pain, recognition 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, 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 eighteen times; six users registered with the site during the evaluation study. Participants explored a variety of pages, although being active and a healthy weight were 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 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.