Life situation among persons living with inflammatory bowel disease

Abstract: Living with inflammatory bowel disease (IBD) affects physical, psychological and social dimensions, limiting the ability to engage in daily activities. Persons with IBD may need frequent and lifelong contacts with the healthcare (HC), highlighting the importance of quality care. High quality HC for persons with IBD involves a partnership between the HC professionals and the person living with the disease. Information is essential, the more a person knows about their disease, the more concordant and satisfied with their treatment they are likely to be.The overall aim of this thesis was to describe the knowledge need, life situation and perception of HC among persons living with IBD, in order to develop a questionnaire to evaluate the quality of HC.This thesis is based on three studies that are presented in four papers. Qualitative methods were used to describe aspects of life situation in relation to the disease, whereas quantitative method was used to develop a questionnaire measuring quality of care. Study I and II have an inductive qualitative design. In study I, qualitative interviews with 30 people were performed to describe the knowledge need and experience of critical incidents in daily life while living with IBD. The interviews in study I were analyzed using content analysis (results presented in Paper I) and critical incident technique (results presented in Paper II). In study II, the perceptions of HC among persons living with IBD was explored in five focus group interviews and two individual interviews, in total n=26. Study III aimed to develop and evaluate a questionnaire, measuring quality of care among persons with IBD, including 318 persons with IBD and 8 professionals. The knowledge need among persons with IBD focused on managing symptoms and course of the disease and learning to assimilate the information in order to manage everyday life. Losing bowel control was of great concern for most of the informants in the study. Many of the informants said that “the bowel ruled their life” and that it influenced them to a great extent in their daily lives. The perception of HC among persons with IBD meant being met with respect and mutual trust, receiving information at the right time, shared decision-making, competence and communication, access to care, accommodation, continuity of care and the pros and cons of specialized care. The quality of care questionnaire QoC-IBD was constructed in five dimensions, building on the results from Study I and II. The dimensions were trust and respect, decision-making, information, continuity of care and access to care consisting of 21 questions in total. QoC-IBD is a short, self-administrated questionnaire that measures experiences of healthcare among persons with IBD with promising validity and reliability.To improve quality of care, HC is recommended to consider individual care needs and take the person’s daily life and social context into account. The QoC-IBD questionnaire measures the subjective experience of quality of care. Further testing in clinical practice is necessary to evaluate if QoC-IBD can be used to evaluate the care given and areas of improvement in HC for persons living with IBD.