Till Örebro universitet

Background: People with irritable bowel syndrome (IBS) often experience severe illness-related troubles in their everyday lives. Many persons also perceive their disease-related knowledge to be insufficient, and they feel dissatisfied with their inability to improve well-being. Previous research about patient education and IBS has emphasized biomedical outcomes of symptoms, health-promoting behaviours, coping and health-related quality of life, rather than people's experiences.

Aim: To explore people's experiences of participating in a multidisciplinary group-based patient education programme about IBS and of the influence of this programme on everyday life with illness. Methods:  Focus group interviews were performed with 31 persons after their participation in the patient education programme. Interpretive description guided the inductive analysis of data. The study was approved by the local research ethics committee.

Findings: The analysis revealed four patterns; being part of a safe community, learning about oneself through others, understanding and controlling the body and illness as a whole, and being outside of the community. The pattern of learning about oneself through others can be described as a reciprocal activity of learning by listening to, telling and observing others. Being among similar others had created feelings among most of the focus group participants of being part of a safe community where taboo subjects related to IBS-symptoms could be outspoken. Understanding the body and illness as a whole had enhanced their ability to interpret bodily signals and to handle trouble some situations with greater self-confidence, and this regained their access to the social everyday world.

Conclusion: The combination of reciprocal sharing of experiences and the provision of professional scientific knowledge during the patient education programme together contributed to a growing readiness to improve well-being in everyday life, for most of the participating individuals. This was based on new understandings of the body and illness as a whole and of new abilities to make knowledge-based decisions about what strategies to use in overcoming illness-related troubles.