Left behind and left out: The impact of the school environment on young people with continence problems.

OBJECTIVES

To explore the impact of the secondary school environment on young people with continence problems.

DESIGN

In-depth qualitative semi-structured interviews.

METHODS

We interviewed 20 young people aged 11-19 years (11 female and nine male) with continence problems (daytime wetting, bedwetting, and/or soiling). Interviews were conducted by Skype (n = 11) and telephone (n = 9). Transcripts were analysed using inductive thematic analysis.

RESULTS

We generated five main themes: (1) Boundaries of disclosure: friends and teachers; (2) Social consequences of avoidance and deceit; (3) Strict and oblivious gatekeepers; (4) Intimate actions in public spaces; and (5) Interrupted learning.

CONCLUSION

Disclosure of continence problems at school to both friends and teachers was rare, due to the perceived stigma and fears of bullying and social isolation. The lack of disclosure to teachers and other school staff, such as pastoral care staff, creates challenges in how best to support these young people. Young people with continence problems require unrestricted access to private and adequate toilet facilities during the school day. There is a need for inclusive toilet access policies and improved toilet standards in schools. Addressing the challenges faced by young people with continence problems at school could help to remove the barriers to successful self-management of their symptoms. It is particularly concerning that young people with continence problems are at higher risk of academic underachievement. Increased support at school is needed to enable young people with continence problems to achieve their academic potential. Statement of Contribution What is already known on this subject? Continence problems are among the most common paediatric health problems Self-management of continence problems requires a structured schedule of fluid intake and bladder emptying Inadequate toilet facilities and restricted access make it difficult for young people to manage their incontinence What does this study add? Improvement is needed in teacher understanding of the needs of young people with continence problems Young people are reluctant to disclose continence problems due to perceived stigma and fear of social isolation Young people with continence problems may be at increased risk of academic underachievement.