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

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

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.

MeSH terms

  • Adaptation, Psychological*
  • Aged
  • Arthritis, Rheumatoid / psychology*
  • Emotions
  • Family Characteristics
  • Female
  • Health Services Needs and Demand
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Population Groups
  • Qualitative Research
  • Sexual Partners
  • Spouses / psychology*
  • Stress, Psychological
  • Women