Exploring the learning and support needs of individuals with inflammatory arthritis

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Christopher SJ Tran
Joyce Nyhof-Young
Gayathri Embuldeniya
Paula Veinot
Phedias Diamandis
Lopamudra Das
Romy Cho
Mary J. Bell

Keywords

arthritis, inflammatory arthritis, peer support, peer support intervention, peer mentoring

Abstract

This study aims to identify the informational, emotional and appraisal support needs of individuals with inflammatory arthritis (IA) from the perspectives of patients, family and friends, and health care providers (HCPs). Desirable characteristics of a peer-to-peer mentoring program as an adjunct to clinical care for people with early IA (EIA) were also ascertained. Semi-structured interviews were performed with a purposive sample of patients with IA (n= 15), family members and friends (n= 6), and HCPs (n= 9) involved in the care of IA. Interview data were analyzed using NVivo 8. Descriptive themes were identified through constant comparative analysis. Individuals with IA prefer a variety of information sources, and informational needs evolve over time. Family and friends suggested that an emotional support network was valuable to help cope with and learn about IA. The idea of peer-to-peer mentoring as a form of support was well received, as peers were perceived to be able to provide informational, appraisal and emotional support. Although HCPs cautioned that peers should acknowledge the limits of their knowledge, they too suggested that peers could help reinforce informational support provided by HCPs. Disease stage and personal qualities were important considerations for a peer support program. Peer support was a well-received approach for helping individuals with EIA cope with concerns brought by their new diagnosis and to meet their information and support needs. These results suggest that peer mentoring, if context-driven and sensitive to individual needs, could be valuable in helping individuals with EIA to manage their condition. Development of an EIA-specific peer support intervention is underway.