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Learning to Live With a Permanent Intestinal Ostomy: Impact on Everyday Life and Educational Needs

PURPOSE: The aim of the study was to explore the impact of a permanent stoma on patients' everyday lives and to gain further insight into their need for ostomy-related education. SUBJECTS AND SETTING: The sample population comprised 15 persons with permanent ostomies. Stomas were created to manage colorectal cancer or inflammatory bowel disease. The research setting was the surgical department at a hospital in the Capitol Region of Denmark associated with the University of Copenhagen. METHODS: Focus group interviews were conducted using a phenomenological hermeneutic approach. Data were collected and analyzed using qualitative content analysis. RESULTS: Stoma creation led to feelings of stigma, worries about disclosure, a need for control and self-imposed limits. Furthermore, patients experienced difficulties identifying their new lives with their lives before surgery. Participants stated they need to be seen as a whole person, to have close contact with health care professionals, and receive trustworthy information about life with an ostomy. Respondents proposed group sessions conducted after hospital discharge. They further recommended that sessions be delivered by lay teachers who had a stoma themselves. CONCLUSIONS: Self-imposed isolation was often selected as a strategy for avoiding disclosing the presence of a stoma. Patient education, using health promotional methods, should take the settings into account and patients' possibility of effective knowledge transfer. Respondents recommend involvement of lay teachers, who have a stoma, and group-based learning processes are proposed, when planning and conducting patient education.