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.

Impact of a temporary stoma on patients' everyday lives: feelings of uncertainty while waiting for closure of the stoma.

AIMS AND OBJECTIVES: To examine patients' experiences of impact of a temporary stoma on their everyday life. Furthermore, we wanted to generate new knowledge and comprehension of learning how to live with a temporary stoma. BACKGROUND: There are many aspects, largely unexplored, that may influence patients' adaptation to life with a stoma. Amongst these, being in a temporary state is relatively unexplored and may have a restrictive impact on patients' adaptation. DESIGN: Focus group interviews conducted with seven patients with temporary stoma were set up with a hermeneutic phenomenological perspective. METHODS: Data were processed using qualitative content analysis. RESULTS: The creation of a temporary stoma led to feelings of uncertainty related to being in an undecided situation. Stoma creation led to feelings of stigma and worries about disclosure. Patients proposed group-based patient education with lay educators with a stoma to make sure that information about the stoma was based on real-life experiences. CONCLUSIONS: Creation of a temporary stoma was linked to uncontrollable feelings of uncertainty. Professionals should assist patients with focus on coping strategies, as they are associated with positive re-evaluation of the situation. Introducing a coherent and structured learning environment involving both lay educators with a stoma and group-based learning would be useful. RELEVANCE TO CLINICAL PRACTICE: Nurses and other health professionals should support patients in problem-focused coping strategies. These strategies may be supported when patients have a high sense of coherence. Furthermore, patients' disclosure of the stoma as a way to master feelings of stigma should be facilitated. Stoma education is central for patients, and group-based learning that involves lay educators with a stoma is seen as a way to empower patients with temporary stomas.