Unprepared for the Emergence of a Parastomal Bulge – A Qualitative Study Into Patients' Perspectives

Aim To investigate patients' experiences of being prepared for the emergence of a parastomal bulge in relation to a stoma. Materials and Methods Qualitative interviews with 20 patients participating in five focus groups. Two groups consisted of patients referred for repair of parastomal bulging and three groups were patients receiving non-surgical treatment. Results The unforeseen bulge gave rise to increasing concerns and worry about the cause and consequences of the bulging skin. Patients sought explanations in their own lives and suspected that their behaviour or previous illness such as influenza, coughing, and efforts to rehabilitate after surgery, induced the bulge. Missing or conflicting information led to counterproductive behaviour. Patients unknowingly carried on with hard and strenuous work after stoma surgery, a behaviour they would have refrained from had they known about the bulge. Patients found the bulge hard to live with and were disappointed with healthcare professionals due to lack of information on prevention and treatment strategies. When consulting surgeons for advice, patients realized that surgical treatment was a gamble. This helped some patients get on in life while others were left with little hope of change. Conclusion Lack of information may lead to mistrust and disappointment with healthcare professionals. Addressing patients’ individual support needs and information needs is important to preserve patient autonomy, satisfaction and well-being. Surgeons and stoma nurses should be aware of the impact of their approach to communicating with patients about parastomal bulging.