Sebastiaan van der Storm

100 Chapter 4 the intention to become friends. As such, patients can bond and share experiences and feelings that non-peers may not understand easily. Another option would be to provide patients with a one-to-one chat selected expert patients, who have more experience in giving advice to other patients and dealing with difficult questions. Here, the goal is to ask about stoma-related problems and advice, and not to become friends. This option would require an extensive budget, as expert patients should be hired, trained, and managed. Representatives of stoma-related associations expressed their preference for experts in a controlled environment. Patient 6 (FG1): “I really missed having some fellow patient contact.” Interviewer: “How can we solve this problem though a mobile application?” Patient 6: “I think… a sort of community chat group. So, you can ask questions.” Representative 4 (FG5): “We have two possibilities: there are people wishing to become friends with other ostomy-patients, or get a relationship. But if they know they did a special course and are trained, then they are more like semi-professionals.” 4. Contact with healthcare providers 4.1 Unclear contact person in case of issues/problems Patients expressed that it can be difficult to know which healthcare providers should be contacted to address a specific question. Normally, a stoma nurse is the first contact person for all stoma-related questions. However, patients see many healthcare providers during the perioperative period, and they struggle to have a good overview which healthcare providers should be contacted. An overview in the app is considered helpful. Patient 2 (FG2) “There are so many channels you can ask questions. This also creates a problem. You think ‘To who am I going to ask that question?’ because I have so many contacts at once right now. If there is perhaps such an overview in an app… “ 4.2 Contact a healthcare provider in a mobile app Patients suggested that direct contact with stoma nurses would make it easier for patients to ask questions and prevent unnecessary hospital appointments. However, a surgeon explained that it would demand that nurses answer in a short period, putting too much pressure on them, and that the system should be waterproof, guaranteeing that all questions indeed arrive at a nurse. It would not be possible to create such a large organisation for this app. Furthermore, hospital systems do not advocate patient information to ‘land’ outside the hospital record in an independent app, risking lost to follow-up of information in the patient file. Therefore, participants suggested a list of nurses, dieticians, and physiotherapists, so that patients could find these healthcare professionals more easily if needed.

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