Background Despite early interventions, pain intensity is still moderate to high in the majority in rheumatoid arthritis (RA), leading to activity limitations and participation restrictions. The International Classification of Functioning, Disability and Health (ICF) is an overall conceptual model where disability and functioning are viewed as outcomes of interactions between health conditions and contextual factors. Activity is defined in ICF as the execution of a task or an action by an individual. Participation is defined as the involvement in a life situation. Environmental aspects, such as others’ attitudes, play a significant role for activity and participation.
Objectives The aim of this study was to describe others’ attitudes of pain and its consequences for participation in everyday life for people with rheumatoid arthritis (RA).
Methods Seven semi-structured focus group discussions were conducted with 33 men and women of different ages with RA. The discussions focused on environmental factors such as others’ attitudes of pain, understanding and social support, that facilitate or hinder daily activities and participation in social contexts. Data were analysed with content analysis.
Results Regarding the impact of pain on participation and independence, personal factors and the social environment were found to be important. The participants were frustrated with not being able to do what they wanted or needed to do, reduced opportunities for participation in the social context and being dependent on family and friends for everyday functioning.
Attitudes of employers, colleagues, friends and relatives were perceived to affect the consequences of pain in everyday activities, both positively and negatively. Support from family and friends created opportunities for participation. Other people’s thoughtfulness contributed to well-being at times with severe pain. Colleagues’ support was perceived as important. Lack of support from colleagues, family and friends were causing participation restrictions. Poor understanding of the pain or friends ignoring the pain obstructed participation in social contexts. Participants described having to ask for help or to hand over activities at home, which created a feeling of dependence. This was perceived as annoying and inconvenient.
Conclusions The relationship between pain and daily activities in RA was complex. Pain as an impairment was expressed to be related to activity limitations and participation restrictions, as well as to contextual factors. These findings highlight the clinical importance of paying attention to the complexity of pain and its relation to daily activities and participation.
Disclosure of Interest None Declared