Background An important perspective in research is the patients’ own experiences of how it is to live with RA, in terms of dilemmas and consequences in everyday life. Although there have been improvements in the outcomes due to the pharmacological treatment, RA still has an impact on functioning (1). Especially patients with persistent activity limitations indicated by a high HAQ score may also experience restricted social participation and thus be in need of comprehensive multidisciplinary assessments to guide appropriate rehabilitative interventions (2). However, it is not clear how participation should be assessed in early RA.
Objectives The aim was to explore dilemmas of participation experienced in everyday life in early RA.
Methods We interviewed 48 patients, age 20 – 63, with early RA about participation dilemmas in everyday life, related to RA, with Critical Incident Technique using general and open questions. Transcribed interviews were condensed into meaningful units describing actions/situations. Condensed dilemmas were listed into tables (patients own words). In next step, these descriptions were linked to ICF activity/participation codes according to ICF linking rules (3). Dilemmas related to ICF activity/participation according to domestic life, interpersonal interactions/relationships, community, social and civic lives are reported here.
Results Regarding domestic life dilemmas were linked to acquisition of goods and services, preparing meals, doing housework, caring for household objects and assisting others. Regarding interpersonal interactions and relationships the dilemmas were linked to basic interpersonal interactions, complex interpersonal interactions, relating with strangers, informal social relationships, family relationships and intimate relationships. About community, social and civic life dilemmas were linked to community life, recreation and leisure, and religion and spirituality. The described ICF-linked dilemmas were also linked to each other. For instance dilemmas related to community life are combined with dilemmas within mobility such as lifting and carrying objects and moving objects with lower extremities when being active in an association. Other combined dilemmas concern interpersonal interactions and relationships such as refraining from attending a wedding party due to fear of shaking hands with people or not engaging in association activities when not having the energy to engage in other people
Conclusions The results illustrate patterns of participation restrictions in early RA. Awareness about the described patterns is relevant to comprehensive multidisciplinary assessments.
Sokka, T. Long-term outcomes of rheumatoid arthritis. Curr Opin Rheumatol (Review). 2009; 21:284-90.
Thyberg I, Dahlström Ö, Björk M, Arvidsson P, Thyberg M. Potential of the HAQ score as clinical indicator suggesting comprehensive multidisciplinary assessments: the Swedish TIRA cohort 8 years after diagnosis of RA. Clin Rheumatol, in press.
Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G. ICF linking rules: an update based on lessons learned. J Rehabil Med 2005; 37: 212-8.
Disclosure of Interest None Declared
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.