Rheumatoid arthritis (RA) is a chronic disease affecting several aspects of everyday life.
The purpose of patient education is to help people with RA to manage their chronic illness.
There is no tradition in Denmark to engage people with RA in developing and implementing patient education.
This study aims to explore how everyday life is affected by RA and to discuss the implications for patient education.
In total six focus groups were conducted including 19 women and 13 men with RA. The groups were selected according to purposeful sampling, aimng to span the greatest possible variation in age, educational background and illness duration. Three groups were made up of participants with newly diagnosed RA (max. 1,5 years of diagnosis) and three groups of participants with diagnosis more than 1,5 years.
The interviews were transcribed verbatim and content analysis inspired by Coffey and Atkinson was used in managing and analyzing the data.
The analysis resulted in four distinct categories that describe how everyday life was affected by RA. Self-identity and self-perception was affected, social relations within the family and friendships changed, work relations were challenged and new relations within health- and social systems were established that affected the individuals in both positive and negative ways. The most important for the participants was the wish to continue “normal life”. The analysis showed that a few individuals were able to continue most daily activities as RA had only a minimal impact on normal life. This was due to receiving a fast diagnosis and effective medical treatment that kept symptoms under control.
Implications for future patient education - four interrelated areas of support:
- Support to manage the symptoms in everyday life including disease-specific knowledge about RA
- Support for areas of social interaction, as for instance work and support to understand how RA can affect one´s social life
- Support to manage psychological and emotional reactions related to how RA affects conceptions of self and identity, especially in the early phases of RA
- Support to facilitate meeting others with RA.
For the most people, living with RA affects almost every aspect of everyday life. This has important implications for patient education.
To ensure that patient education is perceived as relevant and supportive, it should be inter-disciplinary and should incorporate not only disease-specific knowledge about RA and managing RA symptoms but also social and psychological dimensions related to everyday life, and it should facilitate meeting others with RA.
Disclosure: T. M. Kristiansen, None; J. Primdahl, None; R. Antoft, None; K. HÝrslev-Petersen, None.