Cancer survivors’ challenges with ostomy appliances and self-management.

Abstract

e23091 Background: Ostomies adversely affect health-related quality of life among cancer survivors. Survivors and their families must engage in ostomy self-management, make substantial behavior changes, and adjust to the consequences of their condition. We explored long-term cancer survivors’ challenges with ostomy appliances and ostomy self-management. Methods: Pooled qualitative data from two studies were used. These included 1) written responses from long-term (≥5 years) rectal cancer survivors describing their greatest challenges with ostomy appliances and associated repercussions; and 2) intervention session notes and greatest challenge responses from an ongoing RCT of a telehealth intervention with ostomy survivors. Using content analysis, several coauthors reviewed all responses related to ostomy wafers/appliances and self-management techniques, and coded each by theme. The themes were reviewed and agreed upon by the research team. Counts were tallied for each theme based on the number of times they were mentioned by respondents. Results: Eight themes emerged: bleeding, pain, leakage, skin problems/irritation/rash, wafer-related issues, materials getting under the wafer, time needed to care for ostomy, and solutions to clean the stoma. Collectively, the eight themes were mentioned 106 times by respondents. Overall, the most commonly mentioned ostomy appliance problem was leakage (27%), followed by skin problems (20%), and pain (14%). For these common problems, respondents described challenges with successfully fitting the wafer to prevent leakages, poor wafer adherence to the skin area surrounding the stoma, allergic reactions to adhesives, and painful sores around the stoma site. Respondents described how their anxiety related to leakage, odor, and/or skin irritation greatly inhibited their social activities and self-confidence with ostomy self-management. Conclusions: Cancer survivors living with an ostomy experience multiple obstacles with ostomy appliances and self-management. These obstacles undermine their ability to gain confidence in caring for their ostomy. Interventions to improve self-management and self-efficacy may ease the psychological and social burden of living with an ostomy.