Children's experience with daytime and nighttime urinary incontinence – A qualitative exploration. Issue 5 (October 2020)

• Record Type: Journal Article
• Authors: Malhotra, Neha R.; Kuhlthau, Karen A.; Rosoklija, Ilina; Migliozzi, Matthew; Nelson, Caleb P.; Schaeffer, Anthony J.
• Is Part Of: Journal of pediatric urology. Volume 16:Issue 5(2020)
• Page Start: 535.e1
• Page End: 535.e8
• Publication Date: 2020-10
• Subjects: Pediatrics -- Urology -- Urinary incontinence -- Qualitative research -- Behavior -- Emotions; Pediatric urology -- Periodicals; Urologic Diseases -- Periodicals; Urogenital Diseases -- Periodicals; Urologic Surgical Procedures -- Periodicals; Child; Infant; Urologie pédiatrique -- Périodiques; Appareil urinaire -- Maladies -- Périodiques; Pédiatrie; Urologie; Pediatric urology; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); Electronic journals; Periodicals; Electronic journals; 618.926
• DOI: 10.1016/j.jpurol.2020.10.002
• Languages: English
• ISSNs: 1477-5131

Abstract

Summary: Background: Much of our knowledge about the impact of urinary incontinence (UI) on children is derived from surveys. While these studies provide an overview of the UI experience, personal interviews may offer additional nuances and a more detailed perspective of what the experience of UI is for children. Objective To conduct interviews and use qualitative analysis to explore the experiences of children with UI, with a particular focus on (1) the impact of UI on participants' lives, (2) which coping strategies children with UI use, and (3) the emotional effects of UI. Study design: Semi-structured interviews of children with non-neurogenic and non-anatomic UI recruited from a pediatric urology clinic were audio recorded and verbatim transcribed. Eligibility included: age 8–17 years, history of UI, English fluency, and being able to participate in a 30 min interview. Conventional content analysis was performed to identify themes directly from the transcripts. Coders independently and iteratively coded transcripts (intercoder reliability >0.85) until inductive thematic saturation was achieved. Results: There were substantial practical and emotional impacts on the 30 (14 males, 16 females) children (median age 11.5 years) with UI. Participants relayed significant interference with social activities like sports and sleepovers, which often lead to avoidant behavior of these activities. By contrast, most stated that UI did not impair school performance. The most strongly and consistently expressed emotions were embarrassment and anxiety. Nevertheless, children described a wide variety of adaptations, including behavioral and cognitive, to manage their incontinence and its effects on their lives (Summary Table). Discussion: This is the first qualitative study that describes the experiences and perspectives of children with UI. Surveys of this population suggest a lower health-related quality of life, particularly in emotional well-being, self-esteem and relationships. This work augments this body of literature and shows how UI interferes with their daily life and is a major source of embarrassment and anxiety. Despite this, children with UI display strong resilience and adapt to their condition. The study was limited in that the sample was biased to those presenting to a urology clinic and was not designed to compare differences in UI experience between ages, genders, or treatment types. Conclusion: This study, the first qualitative exploration of the emotional responses and coping behaviors of children with UI, shows significant social impact and negative emotional responses but marked resiliency. These findings should be considered when developing a comprehensive treatment strategy for children with UI. Summary Table Excerpts of Qualitative Analysis of 30 children with UI. Summary Table Impacts and Adaptations Representative Quotes (Participant ID) Practical affects Sleepovers I don't do sleepovers anymore because I don't want to risk [an accident] (F) Sports If I have an accident while I'm doing a sport, it might interfere, because if I can't get changed and washed up because there's no bathroom nearby … (N) Emotional Impact Negative Embarrassment Well it's embarrassing, and it's uncomfortable … The smell, I really hate the smell, and I would get embarrassed about it … I feel embarrassed. I feel disappointed in myself. I feel like I've failed (L) Anxiety If it's a really long car ride, then … I get kind of scared that I'm going to have to go pee and there's going to be nowhere we can stop (J) Shame It makes you feel like you're different. You're not like they are; you're different. You're not at the same level they are; you're under them somewhere … It's kind of like knowing that you're hiding this really ugly secret that you don't want anybody to find out … It's been a struggle. It almost makes me feel kind of childish in a way (H) Adaptations Preventative Don't hold it in … Even if you don't have to go, go to the bathroom, and that will prevent you from having accidents (O) Mitigating At home, I'll change. But if I'm at recess, or something, I'll tie my sweatshirt around me, or if I don't have a sweatshirt, I'll try to cover it with my shirt, sometimes, until we get inside, because I always carry around some pads and a change of underwear in my bag (P)