eP495 - “An Emotional Rollercoaster.” an Exploration of the Ostomy Patient Experience Through Ostomy Support Groups

Purpose/Background: Ostomies have a high complication rate and are associated with poor quality of life. Rectal cancer survivors described their ostomy as a “nightmare” and reported feeling the perioperative and long-term care were not ideal. Osteomates reported significant lifestyle changes with more sedentary lives confined to their homes and abandonment of their previous hobbies. Despite ostomy surgery being commonly performed, little is known about its true impact on patients’ lives. We explored the experiences and unmet needs of ostomy patients through ostomy patient support groups.Methods/Interventions: This observational qualitative study benefits from existing ostomy support groups, which were selected based on hospital contacts, patient suggestions, and internet searches. Author attended ostomy patient support groups, which are about 2 hours and can be held virtually, in-person, or in a hybrid fashion. Author introduced self and explained the observer role including no medical advice offered. Author took field notes for further evaluation. The iterative steps informed by inductive thematic analysis were used to analyze the field notes.Results/Outcomes: At this time, author has attended 4 different support group meetings which included ostomy nurses, product suppliers, and osetomates, some with a new ostomy, others with years of experience, and some patients after ostomy reversal. Exemplary quotes are provided in Table 1. Overall, osteomates describe their experiences with their stoma negatively: “got hit by a truck” and “very traumatizing.” However, those who were further away from their surgeries were able to give advice, support, and some optimism about life with an ostomy. In all of the support groups attended, participants discussed their experiences with the health care system, particularly in the hospital. Osteomates reported concerns over their care by all members of the team, specifically their surgeons and floor nurses. However, ostomy nurses were praised for their patience and knowledge. Osteomates desired more support and for longer from their health care team. Participants also discussed how non-conducive a hospital is to changing their ostomy appliance. Each support group session seemed to naturally end with participants giving each other practical advice regarding pouching, diet, and outlook on life.Conclusion/

Discussion: Ostomy support groups serve as a valuable tool for osteomates. Group sessions appear to serve several functions including group therapy to process experiences, sense of community, and a source of practical advice for living with an ostomy. Osteomates highlighted suboptimal areas of care and should be included as active key stakeholders in healthcare quality improvement initiatives. Specifically, osteomates suggested rearranging hospital rooms and bathrooms to being more conducive to ostomy appliance changes as well as creating long term health care follow up dedicated to ostomy-related issues. Additionally, osteomates desired more interactions with certified ostomy nurses, both inpatient and outpatient. This work will inform quality improvement projects and the creation of a qualitative interview guide to further explore ostomy patient’s experience.Table 1. Exemplary Quotes from Ostomy Patient Support Groups