The impact of intermittent catheterization on students and families in the school environment

key:article.publicationhighlight Bauer et. al, Neurourol Urodyn. 2023

In this article we sum up the key findings and recommendations of a 2023 study by Bauer et al. which explores intermittent catheterization (IC) by children and adolescent in school settings.

Children and intermittent catheterization (IC)

Intermittent catheterization (IC) is the golden standard for children and adolescents in need of bladder management, facilitating both their independence and discretion. The impact of IC on children and adolescents in a school setting has however not received sufficient attention. 

A new study from 2023 by Bauer et al. finally provides insights to that. The study examines what adolescents, young adults and their caregivers experienced when IC was required during the school day, and how well the schools adjusted to their needs, e.g., by enabling privacy, adequate hygiene, and appropriate access to bathroom facilities. Oftentimes, schoolchildren and adolescent spend eight hours or more of the day in a school setting why it’s important to be able to catheterize in an adequate way when needed and not risk missing out on important educational and social school activities.  

What the study findings reveal 

Children and young adults who require IC to empty their bladder were included in the study, as well as the family/caregivers (n=40 families). Data was obtained by in-depth interviews which were comprehensive, involving multiple aspects relating to IC. 

The results revealed that the majority of caregivers (about 75%) felt schools were doing an adequate job in accommodating the needs of those students requiring IC. Conversely, 33% of students felt that their attendance, class participation and ability to learn was affected by having to perform IC. As much as 66% felt it was a challenge to be able to perform IC regularly.  

Key areas of concern for use of IC in school settings 

Bauer and colleagues identified 3 major areas of concern which need to be improved for successful IC in the school setting: 

School personnel (administrators, teachers, nurses, and other school professionals) were not always aware of, nor prepared for the implications of and need for IC. 

Bathrooms in schools were often less than ideal (location, size, cleanliness, privacy, and availability) for successful IC management. 

Participation in extracurricular activities (sports, camps and similar) was challenging for students who need to maintain an IC routine for good bladder health. 

The results from this study also revealed that a handful of students and families experienced that school personnel at times questioned the need for IC, despite being informed. This is astonishing since a frequent IC routine is key for avoiding complications such as urinary tract infections.   

Concerns were raised by the interviewed families about the quality of school bathrooms. Students often had to advocate for appropriate space and time to use the bathroom or get access to the nurse’s office to perform IC. 

The three identified areas opened up for improvements at the concerned schools with many students and caregivers reporting improvements later on. With communication, as well as education and training, school personnel and camp staff became more receptive to providing opportunities for better outcomes. As a consequence, several schools made sure a trained nurse, or similar, always came with the student during off-site activities ensuring catheterization schedules were followed. This allowed for the students to take part in activities and be active, without compromising compliance with bladder emptying.  

Recommendations and conclusions 

Bauer et al state the following recommendations for students in need of bladder and bowel management in a school setting:

Training and education: having universal access to educational material relevant to IC can benefit students, as well as their families and school. To work with training and education in a preventive way and start early, could strengthen the personnel’s knowledge of and confidence in IC management.

Collaboration and care coordination: building strong partnerships among school personnel, families and students is key. All parties have unique perspectives and expertise to carry out individualized care plans. School personnel involved in activities outside the typical school day, also need to be educated to ensure that IC specific adaptations are carried out through the entire school day experience. It’s important to remember that once plans are in place, they also need to be regularly updated to meet the changing needs of students as they mature.   

Peer support program: managing the challenges of chronic health conditions like neurogenic bladder in need of IC, peer support has been shown to be effective. Both when done on a group level or peer to peer matches, this can significantly improve a student’s ability to optimally cope with performing IC at school. Also, the family’s capacity to collaborate with school personnel has been observed to be improved via this support. 

To conclude, this study reveals a lot of challenges that students in need of IC may experience and have to cope with in school. By encouraging an open dialogue and increasing the level of knowledge and education, the experience for students in need of IC, regardless of age or disability, will be improved. 

Both the students as well as their caregivers reported major challenges in taking part in activities like sports, camps, school trips etc. and still maintaining a good IC routine. Lack of accommodations and not being able to be prepared caused stress, forcing the students to skip participation in fun and important activities sometimes. If school nurses or trained personnel were unable to accompany students, family members sometimes needed to step in to ensure their child could empty the bladder.