Young people’s experiences of continence clinics

Background: Continence problems are common in childhood and, for some, these problems continue into adolescence. We report results from the first in-depth qualitative study exploring young people’s experiences of continence problems. This paper specifically examines young people’s views on the clinic experience and their engagement with the treatment process.
Methods: We conducted semi-structured interviews with 18 young people (aged 11 – 20 years) with continence problems (6 with bedwetting, 5 with daytime wetting, 4 with combined wetting and 3 with soiling). Interviews were conducted by Skype (10) or telephone (8). Transcripts were analysed using Inductive Thematic Analysis.
Results: The style of communication and type of language used by the clinician was reported by young people as key in facilitating a positive experience in clinic. Young people expressed a strong desire to be addressed directly by the clinician, rather than via the parent, using age-appropriate language and avoiding complex medical terms. Continuity of care was a pervasive concern. Seeing the same clinician at each appointment was viewed as highly important, whilst experiencing different clinicians each time caused unease and frustration. Some participants reported accepting their continence problems and being willing to engage with treatment. It was not uncommon, however, for young people to report that they actively avoided thinking about their continence problems as a method of coping, causing lack of adherence to treatment, and poor self-management strategies.
Conclusions: This study increases understanding of how to improve the clinic experiences of young people with continence problems. Work to build trust and rapport is vital in facilitating positive clinic experiences and adherence to treatment, with a focus on continuity of care and age-appropriate, patient-centred communication. Understanding patients’ views of their continence problem and the level of acceptance of their problem can help health professionals gain greater insight into the patient experience and provide tailored support and care. Not only will this provide patients with a more positive clinic experience, it may increase patient engagement with, and adherence to, treatment and self-management of their condition. This is of particular concern during the adolescent transition period.