Aims and objectives. To explore the need for knowledge as expressed by patients diagnosed with inflammatory bowel disease. Background. Inflammatory bowel disease has a major impact on physical and emotional well-being, placing considerable demands on patients' management of daily activities. Although inflammatory bowel disease patients' level of knowledge about their disease has been previously studied, it is necessary to learn more about their self-expressed needs. Design. The study was designed to explore patients' need for knowledge; therefore, an inductive method was chosen. Methods. Thirty patients with inflammatory bowel disease were interviewed. Content analysis was used to describe their need for knowledge. Results. The analysis generated three categories and eight subcategories: (1) knowledge related to the course of the disease (subcategories: understanding causal relationships between symptoms and the disease, complications related to the disease and understanding treatment), (2) knowledge related to managing everyday life (subcategories: behaviour that enhances well-being and managing social life) and (3) difficulty understanding and assimilating information (subcategories: shifting knowledge needs, help to understand information and reasons for wanting or not wanting knowledge). Conclusion. Knowledge needs were related to what to expect when living with inflammatory bowel disease in order to manage everyday life. There was a great variation in the need for knowledge, which was greatest immediately following diagnosis and during relapse. Relevance to clinical practice. It is important for healthcare providers to ascertain the patients' individual knowledge needs and together with them formulate an individual care plan that gives the patient the necessary knowledge to manage their health and social life.

Aims and objectives The aim of this study was to explore the perceptions of health care among persons living with inflammatory bowel disease. Background The quality of care plays an important role in the life of persons with a chronic disease. To define what persons with inflammatory bowel disease perceive as high‐quality care, greater focus must be placed on the individual's own perspective of living with the condition. Design A qualitative exploratory study was conducted based on focus groups. Methods Five focus groups were conducted with adult persons living with inflammatory bowel disease, 14 men and 12 women aged 19–76 years. The interviews were performed between January–June 2014. Results The perceptions of health care from the perspective of persons living with inflammatory bowel disease were summarised in two categories: ‘professional attitudes of healthcare staff’ and ‘structure of the healthcare organisation’. Persons with inflammatory bowel disease want to be encountered with respect, experience trust and obtain information at the right time. They also expect shared decision‐making, communication and to encounter competent healthcare professionals. Furthermore, the expectations on and perceptions of the structure of the healthcare organisation comprise access to care, accommodation, continuity of care, as well as the pros and cons of specialised care. Conclusion The findings show the importance of establishing a respectful and trusting relationship, facilitating healthcare staff and persons with inflammatory bowel disease to work as a team in fulfilling individual care needs – but there is room for improvement in terms of quality of care. Relevance to clinical practice A person‐centred approach, which places the individual and her/his family at the centre, considering them experts on their own health and enabling them to collaborate with healthcare staff, seems important to reach a high‐quality healthcare organisation for patients with Inflammatory bowel disease.

Crohn disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic and have a fluctuating clinical course that impacts daily life. Daily life with a chronic disease involves thinking and worrying about the limitations that chronic disease causes. Knowledge about how patients who suffer from IBD manage critical incidents in daily life is lacking. The aim of the study was to describe how patients living with IBD experience critical incidents in daily life in relation to their disease and symptoms. Thirty adult patients were interviewed focusing on critical incidents in daily life. Data were analyzed using the critical incident technique. The study comprised 224 critical incidents and was grouped into 21 subcategories and 5 categories: losing bowel control, having a body that smells, being unable to meet own and others' expectations, not being believed or seen, and experiencing frustration due to side effects and ineffective treatment. These categories formed one main area describing the overall result “The bowels rule life.” The uncertain nature of IBD created critical incidents in which the bowel ruled life, causing patients to avoid social interaction. It also placed considerable demands on the family and sometimes had a negative effect on the afflicted person's career.