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Musculoskeletal Care. 2010 Mar;8(1):46-54. doi: 10.1002/msc.165.

'Your whole life, your whole world, it changes': partners' experiences of living with rheumatoid arthritis.

Author information

1
Centre for Appearance Research, Faculty of Health and Life Sciences, University of the West of England, Bristol, BS16 1 QY, UK. lauren.matheson@live.uwe.ac.uk

Abstract

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 difficulty 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.

PMID:
20077577
DOI:
10.1002/msc.165
[Indexed for MEDLINE]

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