Living with irritable bowel syndrome A patient perspective on everyday life, health care encounters and patient education

Sammanfattning: Irritable bowel syndrome (IBS) is a chronic functional bowel disease. Adults with IBS represent a large group of health care seekers. Previous research has shown that these people often feel insufficiently informed about their condition, and find it hard to manage the disease in everyday life. The patient perspective on IBS has previously been given limited research attention. The overall aim of this thesis was to gain enhanced knowledge and understanding about the lived experience of IBS in relation to everyday life and health care encounters, and to study the influence of a group-based IBS patient education program on the everyday lives of people with this condition. Methods: Study I used a descriptive phenomenological method to analyze nine individually-performed interviews about the lived experience of IBS. Studies II and IV were guided by the interpretive description approach. In study II, the participants from study I were interviewed a second time but with a focus on health care encounters. In study IV seven focus group interviews performed with a total of 31 individuals who had completed the patient education program, were analyzed. In study III, which used an evaluative research design, quantitatively-treated data were collected from self-assessment questionnaires completed by 51 individuals before and after the education program. Findings: The experience of living with IBS (study I) was described as a struggle with an everyday life that had become obstructed, as the lived body had become unfamiliar and unreliable. Feelings of not being able to trust one s body, of being ashamed of one s bodily symptoms, and of feeling different, appeared to be important contributors to the limitations experienced in everyday life. At the same time, the study participants showed a strong will to exceed these limitations. The most common meaning of being a person with IBS in the patient position (study II) was being exposed to unsupportive health care encounters that were shaped by humiliation, insignificance, and abandonment. Feeling mistrusted, and not being acknowledged as an experienced person, brought a lack of self-trust and a devaluation of one-self. Supportive encounters that were characterized by openness and acknowledgement of the patient s life world were less prominent. In study III, the participants reported differences in their use of coping strategies and scored their symptoms as being significantly less severe after participating in the education program. Study IV revealed the importance of combining reciprocal sharing of the group members experience-based knowledge with the provision of professional scientific knowledge. Together, these two types of knowledge seemed to have enabled a growing readiness based on new understandings of the body, on seeing illness as part of a whole, and on a new ability to make knowledge-based decisions about strategies to employ in everyday life. Conclusion: The experience of living with IBS is in many ways dependent on the fluctuating nature of the condition, and the socially unacceptable and troublesome symptoms related to the disease. The nature and attunement of encounters between people with IBS and health care professionals can influence the existential understanding of a person with IBS, and his or her experience of illness, in a way that either boosts or obstructs the feeling of homelikeness in life. The group setting, as an environment that facilitates recognition and sharing of illness experiences, and as a place characterized by safety and intersubjectivity, is assumed to be an important prerequisite for people with IBS in enabling them to learn to live with the disease; and as such, the concepts of community and mutual experiences become central to the education program. Keywords: coping; health care relationships; illness experience; irritable bowel syndrome