Sebastiaan van der Storm

94 Chapter 4 RESULTS The focus group interviews 1-4 lasted an average of 77 min (ranging from 74 to 81 min), and the in-depth interviews of groups 5 and 6 lasted 50 min and 122 min, respectively. As presented in Table 2, twenty-one participants attended the interviews, including six patients, five patient representatives, six nurses, and four gastrointestinal surgeons. Of the nurses, three were specialised in stoma care, two were head of the surgical ward, and one worked in the surgical ward. Patients had a mean stoma care experience of three years (ranging 0.5-8 years), while caregivers and patient representatives had a mean experience of 18 years (ranging 1-40 years). Thematic qualitative analysis of the interviews identified five themes 1) perioperative information provision, 2) the need for information applicable to all patients, 3) the shortage of opportunities for peer contact, 4) contact with healthcare providers, and 5) information about stoma materials (see Figure 1). For the (sub)themes, it was discussed whether a mobile app would be beneficial, and this was supported by quotes. Participants were hopeful that a mobile app could solve some of the problems discussed, and expressed their insight into important aspects of developing an app and the functionalities it should have. 1. Perioperative information provision 1.1 Inadequate or contradictory information provision Stoma nurses reported that patients tend to forget a lot of provided information during patient counselling, and they often had to replicate the information multiple times and / or on multiple occasions; in diverse settings. Patients recognised this and explained that they are under a great amount of stress when a surgeon explains they have to undergo surgery. This message is often so impactful, that having any other information just cannot be processed. Hearing about their disease and the surgery itself is a lot of information to take on at once, it simply prevents them from capturing or remembering additional information about dealing with a stoma. Not being able to process information about getting a stoma, inevitably results in patients unable to remember what is needed with respect to their stoma care, possible preparations before surgery, and how to set up adequate care at home. Patients also reported that different, but sometimes also the same healthcare providers at different times; give inconsistent, and even contradictory advice, which makes them feel insecure. Therefore, patients felt compelled to ask for the same or more information multiple times.

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