Abstract General Information

Title

UNDERSTANDING PEDIATRIC PATIENT EXPERIENCES WITH UROTHERAPY SUPPORTING PRODUCTS: FOCUS GROUP AND CO-CREATION SESSIONS

Introduction and objective

Lower urinary tract (LUT) dysfunctions, such as urinary incontinence, are a common condition among school-aged children (8 to 12 years old) and can negatively affect their quality of life. Urotherapy is the recommended first-line treatment, but patient compliance and motivation are low, resulting in a lower success rate. The traditional urotherapy supporting products are often paper-based solutions (e.g. bladder diaries and bedwetting calendars) and the little technology used (e.g. bedwetting alarms and reminder watches), can be perceived as outdated. The aim of this study is to gain a deeper understanding of the experiences, needs and desires of pediatric patients regarding urotherapy supporting products. Qualitative research in the form of focus groups and co-creation sessions appears to be ideal to deliver rich insights on users´ needs and expectations. However, conducting such sessions with children, especially on a sensitive topic like incontinence, can present challenges. Therefore, creating a safe and inspiring context is crucial to ensure the comfort of all participating children and encourage them to share personal experiences in a creative and playful manner.

Method

Qualitative research was conducted with focus groups and co-creation techniques, with children following a 10-day in-hospital urotherapy group training. A child-friendly focus group discussion toolkit, tailored to the context of urotherapy and built upon a literature foundation, was developed for the study. It consisted of four exercises: an icebreaker/warm-up, collaging, anonymous pen and paper, and a storyline character exercise. The icebreaker and warm-up involved passing a toilet roll while sharing personal facts and engaging in a group mind-mapping activity. The objective was to facilitate group communication, make participants feel relaxed, and establish an environment where sharing and listening are valued. Collaging captured experiences and emotions in various urotherapy contexts: home, school, individual doctor appointments, and in-hospital group bladder training. The process of creating collages allowed children to reflect, express and present their experiences in a creative and interactive manner. The pen and paper exercise used a cardboard toilet prop (Fig. 1), inspired by the black-box game, to facilitate anonymous feedback (good, bad and ideas) on urotherapy products. The open-ended nature of this exercise provided an opportunity for children to reflect on their ideas and experiences without the pressure of an immediate question to answer. This also encouraged more introverted children to participate. The storyline character exercise involved drawing a superhero who also happens to have a bladder problem. This exercise promoted free thinking and imagination. Additionally, it was used to conclude the session on a fun and positive note. Each exercise was accompanied by group discussion. With consent, all sessions were recorded for thematic analysis.

Results

A total of 7 sessions were conducted with 5 groups of children (N=19; M:13, F:6; age range 9-13y), lasting 1.5 to 2 hours each. The collaging exercise revealed that different contexts influenced experiences, with home being a safe and relaxed environment leading to decreased attention to bladder signals and more leakage accidents, school highlighting peer-related concerns and dissatisfaction with school toilets and doctor's visits involving mainly parent-doctor interactions (Fig. 2). The anonymous pen and paper exercise demonstrated that children acknowledged the potential benefits of urotherapy supporting products in improving their condition. Specifically, they expressed a preference for the timer watch, perceiving it as a cool everyday item. However, they perceived most products as technologically outdated, considering that many children of that age already own smartphones. Additionally, they expressed concerns about the products attracting unwanted attention. The children came up with many new ideas for urotherapy products, such as a game toilet, a training buddy, and a smart alarm that would alert when the bladder is full. Finally, the characteristics and traits of the superheroes created by the children provided valuable insights into their perspectives and intrinsic motivations towards urotherapy. These included superpowers to make bullies wet their pants, a diaper man with an unlimited diaper supply, Captain Underpants (a popular Dutch children's book character) with a wetting alarm attached to his underpants and gender-specific accessories with superpowers to prevent urination while wearing them (Fig. 3).

Conclusion

The variety of exercises worked well to gain a deeper understanding of the experiences and needs of pediatric patients regarding urotherapy supporting products. The children acknowledged the value of the products, yet identified opportunities to make them more appealing, thereby enhancing their motivation to use them. Their ideas reflected the children’s desire for more interactive and advanced solutions in urotherapy support, including elements of gamification and smart technology. Important considerations were the influence of peers, the changing context of product use (e.g., home versus school), and the intrinsic motivations portrayed through the superhero traits. These factors highlight the need to take into account social dynamics, environmental contexts, and individual motivations when designing urotherapy products for pediatric patients.