'It's quite hard to grasp the enormity of it' : perceived needs of people upon diagnosis of rheumatoid arthritis

Radford, S and Carr, M and Hehir, M and Davis, B and Robertson, L and Cockshott, Z and Tipler, S and Hewlett, S (2008) 'It's quite hard to grasp the enormity of it' : perceived needs of people upon diagnosis of rheumatoid arthritis. Musculoskeletal Care, 6 (3). pp. 155-167. ISSN 1478-2189

Abstract

OBJECTIVES: The diagnosis of rheumatoid arthritis (RA) brings rapid pharmacological and multidisciplinary team interventions to address inflammatory processes and symptom management. However, people may also need support on the journey to self-management. The aim of this study was to explore what professional support patients feel they receive upon diagnosis, and what support they feel would be most helpful. METHODS: Two focus groups comprised patients with at least five years'; disease duration (n = 7), and patients more recently diagnosed (5-18 months, n = 5). The latter had attended at least two appointments in a rheumatology nurse specialist clinic during the previous year, aimed at providing support upon diagnosis. Transcripts were subjected to thematic analysis to identify common issues regarding support needs, which were then grouped into themes. Interviewing and analysis was performed by researchers not involved in clinical care. RESULTS: Four overarching themes emerged. 'Information' was needed about the symptoms of RA, its management and personal outcome, while 'Support' related to emotional needs ('It's quite hard to grasp the enormity of it'). Information and Support overlapped, in that patients wanted someone to talk to, and to be listened to. These two themes were underpinned by issues of service delivery: 'Choice' (patient or professional to talk to, groups, one-to-one) and 'Involvement' (holistic care, partnership), which overlapped in terms of the opportunity to decide when and which interventions to access. CONCLUSIONS: People with RA report not only informational, but also emotional support needs at diagnosis. The potential for delivering emotional support to patients around the time of diagnosis warrants further exploration.