Understanding patients' perspectives when unprepared for the emergence of a parastomal bulge-a qualitative study.

Aim: The aim was to investigate patients' experiences of being prepared for the development of a parastomal bulge in relation to a stoma.

Methods: The paper draws on a qualitative interview study conducted with 20 Danish patients participating in five focus groups. Analysis was performed using a phenomenological-hermeneutic approach.

Results: We identified three themes. The first theme is 'The unforeseen bulge gives rise to increasing concern and a search for an explanation'. Patients searched for explanations in their own life and suspected that their behaviour or previous illness induced the bulge. The second theme is 'Missing or confusing information leads to counterproductive behaviour'. Patients lacked information on the prevention and treatment of parastomal bulging which led to disappointment with healthcare professionals. The third theme is 'Weighing the pros and cons of life with the bulge against the gamble of surgical repair'. Some patients came to terms with their situation, but for others a deadlocked situation arose when surgical repair was not an option.

Conclusion: Healthcare communication directly impacts on patients' experiences and outcomes. When unprepared for the emergence of a parastomal bulge, patients' emotional and psychological well-being are affected and likewise patients' possibility of using their own health beliefs as a preventive strategy. To preserve patient autonomy, satisfaction and well-being, surgeons and stoma nurses should provide patients with tailored information bearing in mind the current lack of clear evidence on the prevention and treatment of parastomal bulging.