Developing a new social networked self-management tool for people living with joint pain: identifying individuals’ needs and priorities

Clarkson, Paul, Vassilev, Ivaylo, Rogers, Anne and Adams, Joanna (2019) Developing a new social networked self-management tool for people living with joint pain: identifying individuals’ needs and priorities. British Society of Rheumatology Conference, , Liverpool, United Kingdom.

Abstract

Background: Joint pain caused by osteoarthritis (OA) has a substantial impact on everyday life. The costs associated with managing OA are considerable for the individual and for society. Self-management support strategies may assist to mediate the individual costs and technology may contribute to their delivery. Self-management strategies may include the provision of accessible information about OA and the means to identify and engage with resources and opportunities for support from social network members. In doing so, people may be facilitated to access new and existing connections to mobilise support for the management of joint pain. Such approaches have been effective in supporting people to manage other long-term conditions.

Methods: This research aimed to develop a novel web-based resource for self-management of joint pain. To understand the needs and priorities of people living with joint pain for self-management support, three focus groups were undertaken in the community. Participants were asked to review two existing websites and provide feedback. The first website (www.myjointpain.org.au) provided health-based information and symptom advice, designed to be used independently. The second was a social network-mapping tool called Genie (genie.soton.ac.uk) designed to engage people to connections and activities, which was facilitated by the research team. Both are intended to be used to develop the intervention. The data from each focus group was recorded and transcribed, then coded and categorised to identify guiding principles for the content and usability of the intervention. Ethics approval was gained from the University of Southampton, Faculty of Health Sciences committee (Ref. 40268.A1).

Results: Eleven participants were recruited from three community groups. Five categories were identified, including: flexibility, complementarity, tailoring, introductions/engagement and self-management aims. Flexibility: Participants wanted the new site to be adaptable enough to meet their needs at different times. Therefore, some wanted health advice first, followed by social network support, while others wanted flexibility to choose based on their needs. Complementarity: Participants considered that the two websites were complementary and if brought together would allow people to find strategies and support to manage their joint pain. Tailoring: Tailoring was considered important to ensure relevance, trust and reassurance in the information presented. Introductions/engagement: The person or context of the introduction to the site was linked to perceived trust in the site content. Self-management aims: Participants considered that a web-based self-management tool could alleviate some of the demand on the health service and particularly the GP. However, they were also cautious over what they perceived to be self-treatment without guidance from a trusted source of information.

Conclusion: Key user focused priorities have been established for the development of a web-based self-management tool for people with joint pain. Future work will refine this tool with current and future participants and with healthcare professionals and academics.

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Contributors

Author: Paul Clarkson

Author: Ivaylo Vassilev

Author: Joanna Adams

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