‘Your whole life, your whole world, it changes’: Partners' experiences of living with rheumatoid arthritis
Matheson, L., Harcourt, D. and Hewlett, S. (2010) ‘Your whole life, your whole world, it changes’: Partners' experiences of living with rheumatoid arthritis. Musculoskeletal Care , 8 (1). pp. 46-54. ISSN 1478-2189
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Publisher's URL: http://dx.doi.org/10.1002/msc.165
Objectives: Research suggests that rheumatoid arthritis (RA) can have a negative psychosocial impact on partners, as well as patients. However, until now there has been very little in-depth qualitative research in this area. The aim of this study was to explore the experiences of partners of people with RA. Methods: Semi-structured interviews were conducted with a heterogeneous sample of eight partners of people with RA (six men, two women, age range 48–73 years). Transcripts were analysed thematically. Results: Five overarching themes emerged: psychological burden in partners was substantial, as they experienced frustration and distress at watching their partner suffer and tried to protect their spouse from emotional and physical distress. ‘It’s a restricted life’: partners reported having to cut back on previously enjoyable shared activities and had diffi culty making future plans. Adjusting lives: partners had to make considerable adjustments to many aspects of their lives, and had adopted practical and psychological ways to cope. ‘It’s a joint approach’: many partners discussed adopting a joint approach to managing the RA. Met and unmet support needs varied considerably, and many partners felt that a joint approach to treatment taken by health professionals is needed, which involves and recognizes their role. Conclusions: Partners of people with RA are vital to the patients’ disease management, but the data show that many carry a substantial psychosocial burden. Healthcare professionals should be aware of this, so that couples coping with RA can be better supported.