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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

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
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
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.
Joint pain; Osteoarthritis; Digital health; Self-management; Social networks
Clarkson, Paul
476e6028-5270-49b8-996f-19d930e6abf6
Vassilev, Ivaylo
d76a5531-4ddc-4eb2-909b-a2a1068f05f3
Rogers, Anne
105eeebc-1899-4850-950e-385a51738eb7
Brooks, Lotty
f1772470-2f7d-4738-96d8-01d0c1b6ea3a
Wilson, Nicky
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Lawson, Jem
1b27a898-fde2-4eb3-bfb6-92fa3ddc5e00
Adams, Joanna
6e38b8bb-9467-4585-86e4-14062b02bcba
Clarkson, Paul
476e6028-5270-49b8-996f-19d930e6abf6
Vassilev, Ivaylo
d76a5531-4ddc-4eb2-909b-a2a1068f05f3
Rogers, Anne
105eeebc-1899-4850-950e-385a51738eb7
Brooks, Lotty
f1772470-2f7d-4738-96d8-01d0c1b6ea3a
Wilson, Nicky
7df34065-883c-43ac-8fc7-1d1ae2a08a39
Lawson, Jem
1b27a898-fde2-4eb3-bfb6-92fa3ddc5e00
Adams, Joanna
6e38b8bb-9467-4585-86e4-14062b02bcba

Clarkson, Paul, Vassilev, Ivaylo, Rogers, Anne, Brooks, Lotty, Wilson, Nicky, Lawson, Jem and Adams, Joanna (2020) 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. JMIR Formative Research, 4 (11), [e18565]. (doi:10.2196/18565).

Record type: Article

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.

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Accepted/In Press date: 30 September 2020
e-pub ahead of print date: 26 November 2020
Keywords: Joint pain; Osteoarthritis; Digital health; Self-management; Social networks

Identifiers

Local EPrints ID: 444494
URI: http://eprints.soton.ac.uk/id/eprint/444494
PURE UUID: 145c7c9d-0657-4fbc-83a5-36ba2869b621
ORCID for Lotty Brooks: ORCID iD orcid.org/0000-0002-4461-1247
ORCID for Joanna Adams: ORCID iD orcid.org/0000-0003-1765-7060

Catalogue record

Date deposited: 21 Oct 2020 16:31
Last modified: 26 Nov 2021 03:05

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Contributors

Author: Paul Clarkson
Author: Ivaylo Vassilev
Author: Anne Rogers
Author: Lotty Brooks ORCID iD
Author: Nicky Wilson
Author: Jem Lawson
Author: Joanna Adams ORCID iD

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