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Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project)

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Abstract

Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions and their relationship to participation restrictions is scarce. The objective of the study was to explore emotions related to participation restrictions by patients with early RA. In this study, 48 patients with early RA, aged 20–63 years, were interviewed about participation restrictions using the critical incident technique. Information from transcribed interviews was converted into dilemmas and linked to International Classification of Functioning, Disability, and Health (ICF) participation codes. The emotions described were condensed and categorized. Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings and getting dressed, or not being able to perform duties at work. Sadness was experienced in relation to not being able to continue leisure activities or care for children. Examples of fear descriptions were found in relation to deteriorating health and fumble fear, which made the individual withdraw from activities as a result of mistrusting the body. Anger and irritation were described in relation to domestic and employed work but also in social relations where the individual felt unable to continue valued activities. Shame or embarrassment was described when participation restrictions became visible in public. Feelings of grief, aggressiveness, fear, and shame are emotions closely related to participation restrictions in everyday life in early RA. Emotions related to disability need to be addressed both in clinical settings in order to optimize rehabilitative multi-professional interventions and in research to achieve further knowledge.

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Acknowledgments

The study was financially supported by the County Council of Östergötland Research Foundations, Medical Research Council of South-East Sweden (FORSS), Norrbacka-Eugenia Foundation, and the Swedish Rheumatism Association.

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None.

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Authors and Affiliations

  1. Division of Social Work, School of Health, Care and Social Welfare, Mälardalen University, 631 05, Eskilstuna, Sweden

    Gunnel Östlund

  2. Rehabilitation Section HMC, County Council of Östergötland, Linköping, Sweden

    Mathilda Björk

  3. Department of Rehabilitation, School of Health Sciences, Jönköping University, Jönköping, Sweden

    Mathilda Björk

  4. Rehabilitation Medicine, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden

    Mathilda Björk & Mikael Thyberg

  5. Rheumatology, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköping University, Linköping, Sweden

    Ingrid Thyberg

  6. Department of Rheumatology in Östergötland, County Council of Östergötland, Linköping, Sweden

    Ingrid Thyberg

  7. Rehabilitation Section NSC, County Council of Östergötland, Linköping, Sweden

    Eva Valtersson & Annette Sverker

  8. Patient Research Partner, The Swedish Rheumatism Association, Stockholm, Sweden

    Birgitta Stenström

Authors
  1. Gunnel Östlund
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  2. Mathilda Björk
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  3. Ingrid Thyberg
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  4. Mikael Thyberg
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  5. Eva Valtersson
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  6. Birgitta Stenström
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  7. Annette Sverker
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Correspondence to Gunnel Östlund.

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Östlund, G., Björk, M., Thyberg, I. et al. Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project). Clin Rheumatol 33, 1403–1413 (2014). https://doi.org/10.1007/s10067-014-2667-2

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  • DOI: https://doi.org/10.1007/s10067-014-2667-2

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