Healthcare as perceived by persons with inflammatory bowel disease – a focus group study

• Background: The quality of care plays an important role in the life of persons with a chronic disease. In order 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, fourteen men and twelve women aged 19-76 years. The interviews were performed between January and June 2014. Results: The perceptions of healthcare from the perspective of persons living with inflammatory bowel disease were summarized in two categories: “Professional attitudes of healthcare staff” and “Structure of the healthcare organization”. 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 organization comprises access to care, accommodation, continuity of care, as well as the pros and cons of specialized 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 place 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 organization for patients with IBD.

Ämnesord

Medical and Health Sciences  (hsv)

Health Sciences  (hsv)

Medicin och hälsovetenskap  (hsv)

Hälsovetenskaper  (hsv)

Nyckelord

Focus group interview

inflammatory bowel disease

quality of care