96 Chapter 4 Patient 1 (FG4): “One doctor says: ‘You have to put the stoma bag on the left side’ and the other doctor says otherwise. You know, this confuses people and they will get them in trouble”. 1.2 Underexposed topics Patients who are new to a stoma face many challenges and questions during their care pathway. For instance, how should a stoma normally look, how do they recognise stomarelated problems in a timely manner, and how will a stoma impact daily life? Moreover, patients explained that healthcare providers fall short of advice on mental health, sexuality, and overall stoma care, and that it led to insecurity. Patients wished to have had better advice regarding these topics and emphasised the importance of providing adequate information on the impact of having a stoma on their mental health. Following that, patients indicated that psychosocial aspects and sexuality should be discussed in the app to prepare patients for their lives after surgery and how to cope with possible mental health problems. Cultural aspects can influence one’s acceptance of a stoma, and should therefore be discussed in the app as well. Patient 1 (FG1): “..if there is a problem with my stoma... And, these problems are never told to me, how should I know how to solve them?” Patient 4 (FG1): “I was once directed to that topic [sexuality] by a radiologist, and he discussed it with us. I found that very pleasant. None of the other doctors I have encountered paid any attention to this matter.” Some patients had experienced uncomfortable situations with customer employees when travelling abroad, in which patients have to explain what a stoma is. They recommended that the app should provide a brief explanation of what a stoma in several languages. Moreover, they recommended a small ‘tips & tricks’ function for the most common problems abroad, such as obstipation, dehydration or not having enough stoma materials. Patient 3 (FG2): “Things like ‘I have a stoma or I have stoma materials with me’, if that could be translated in a few languages, it would be very helpful.” 1.3 Providing reliable and easy to find information in the app Participants suggested that reliable up-to-date information in the app could benefit many patients, as inaccurate, contradictory and confusing information can be given by various caregivers. According to them, patients should be properly educated on how to prepare themselves for the operation, what happens during the operation itself, and what is considered appropriate after-care. Participants recommended that stoma care, stoma problems, self-management, and choice and use of different stoma materials should all be major topics in the app.
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