What do children say about daytime and nighttime incontinence? - a qualitative exploration of 30 children with urinary incontinence
Anthony J. Schaeffer, MD, MPH1, Neha R. Malhotra, MD1, Karen A. Kulthau, PhD2, Caleb P. Nelson, MD, MPH3.
1University of Utah, Salt Lake City, UT, USA, 2Massachusetts General Hospital, Boston, MA, USA, 3Boston Children's Hospital, Boston, MA, USA.
Although children with incontinence are subject to many stressors and alterations to their normal activities, their perspectives are seldom reported. We aimed to provide an in-depth qualitative report of patients' experiences with urinary incontinence.
A semi-structured qualitative interview script was developed, pretested, and used with study participants (pts) recruited from a pediatric urology clinic. Participants (pts) included 30 children aged 8-17 years with daytime incontinence (6 pts), monosymptomatic nocturnal enuresis (6 pts), nonmonosymptomatic nocturnal enuresis (3 pts), both daytime and nighttime incontinence (14 pts), and stress incontinence (1 pt).
Verbatim-transcribed interviews were coded individually and then analyzed for general themes using Hermeneutical Analysis.
For brevity, we discuss three themes here.
Children with incontinence stated that incontinence episodes themselves interfered with schoolwork or school-related activities (8 pts), sports (6 pts), and limited sleepovers or overnight trips (16 pts). Importantly 16, 6, and 7 children stated that their incontinence did not affect their schoolwork, choice of sport, and sleepovers, respectively.
Responses and Adaptations
20 children discussed strategies to avoid accidents including increasing voiding frequency (13 pts), regulating fluid intake (7 pts), and staying awake longer to avoid accidents (2 pts). 17 children adapted to mitigate the effect(s) of their accidents, including using incontinence underwear (8 pts), always having a change of clothes (7 pts), using incontinence-safe bedding (6 pts), hiding accidents (5 pts), and immediately cleaning clothes or sheets (2 pts). 16 children discussed learned behaviors to minimize incontinent episodes such as avoiding laughter or switching play venue to facilitate voiding.
Incontinence's Impact and Participant's Mental Health
When questioned about the general impact of incontinence on their lives, 5 participants responded with catastrophizing statements like, "[Incontinence] is the worst thing that happened to me," 12 stated acceptance (i.e., they are "a part of life sometimes"), and 13 stated that their accidents played "no big deal" in their lives. This last statement may reflect either minimizing or coping behavior.
Participants viewed themselves as having normal/high (21 pts) and low (5 pts) self-esteem, respectively (4 non-responders).
All 30 participants mentioned at least one negative emotional impact. The most commonly expressed negative emotion was embarrassment (23 pts about being "outed," 9 about " being different" from peers, and 13 pts with general accident embarrassment). Anxiety about when and where an accident would occur was also a prevalent emotion mentioned by 20 participants. Regarding depression, 8 patients were mildly "sad" and 6 were "sad to the point of crying."
Our study is the first to provide an in-depth qualitative, exploration into the experiences of children with urinary incontinence. The data surprisingly demonstrate that daytime and nighttime incontinence (in an otherwise healthy child) does not majorly impair a child's daily life (except sleepovers) and that children are especially resilient with respect to adapting to their accidents. Although most participants maintained high or normal self-esteem, embarrassment and anxiety were very prevalent concerns. This supports the integration of behavioral health providers into comprehensive programs to improve urinary continence and quality of life.
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