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National Clinical Guideline Centre (UK). Nocturnal Enuresis: The Management of Bedwetting in Children and Young People. London: Royal College of Physicians (UK); 2010. (NICE Clinical Guidelines, No. 111.)

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Nocturnal Enuresis: The Management of Bedwetting in Children and Young People.

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4Impact of bedwettingon children and young people and their families

4.1. Introduction

Three themes were identified in the evidence review in this area: studies of the impact of nocturnal enuresis on children’s self-esteem and self-image; studies whose aim was to elicit views and attitudes from children and their families regarding nocturnal enuresis; and studies which examined the association between bedwetting and domestic violence.

4.2. What is the family impact of children and young people aged under 19 who have bedwetting?

4.2.1. Impact on self-esteem, self-concept and self-image

Several qualitative based studies were identified which considered the impact of nocturnal enuresis on children’s self esteem. Self esteem has been studied in psychological research, mainly due to the correlation between low self-esteem and later mental health problems 1. However, it is an ill-defined concept particularly due to the interchangeable terminology and similar concepts such as self-concept, self-image and self-worth 28. Consequently, there are problems with the interpretation and comparison of research findings.

Butler and Green (1998) define self-construing as an “internal” assessment of the way in which children feel and view themselves and the world in which they live. The authors consider self-image as a descriptive feature of self, essentially how the child thinks about him or herself, whilst self-esteem is akin to an evaluation and how the child feels about him or herself.

Study characteristics

Theunis (2002) 9 conducted a quasi-experimental study in a group of 27 boys and 23 girls, who were treatment resistant. The mean age was 9 years and 10 months. Some of the children also had day time and night time incontinence. The type and severity of the nocturnal enuresis was not stated, and almost one fourth of the patients had combined diurnal and nocturnal problems. They were compared to 77 children of the same age without nocturnal enuresis. The mean age was 9 years and 7 months.

The instrument chosen to measure the perceived competence of the children on specific domains of their life was the Dutch translation and also validation of the “Self-Perception Profile for Children”.

Children with nocturnal enuresis were reported to have significantly lower global self-esteem (p<0.01) and physical appearance (p<0.05) than children without nocturnal enuresis.

There was a trend to a lower perceived competence in enuretic children concerning their scholastic skills and social acceptance, but it was not significant.

Enuretic girls had a significantly lower (p<0.01) perceived competence than enuretic boys. There was also an interaction effect between study-group and gender, in terms of scholastic skills (p<0.01), behavioural conduct (p<0.01) and social acceptance (p<0.05). The enuretic girls have the lower perceived competence and the non-enuretic girls the highest. In terms of behavioural conduct, the enuretic boys had the highest perceived competence and non-enuretic boys the lowest.

Regarding social acceptance (p<0.05), physical appearance (p<0.05) and global self-esteem (p<0.05), the 10–12 year old enuretic children had the lower perceived competence and the 10–12 years old non-enuretic children had the highest perceived competence. This was also present in terms of the children’s scholastic skills (p<0.05) and behavioural conduct (p<0.05). The 10–12 years old enuretic children had the lowest perceived competence and the 8–9 years old enuretic children had the highest perceived competence.

Butler (2007) 11 sent a questionnaire to 10985 children with a 74.7% response rate, who were part of the Avon Longitudinal Study of Parents and Children (ALSPAC). The sample comprised 4012 (48.0%) male and 4197 (51.1%) female. The bedwetting data was retrieved from a questionnaire administered to parents when their study child was 9 years of age. The mean age at completion was 115.8 months.

Among the children, 36.7% considered wetting the bed as really difficult, and was ranked eighth out of twenty-one behind events of a social and schooling nature. Overall, children with bedwetting appear to construe childhood difficulties in a very similar way to those who do not wet the bed. Dissatisfaction with appearance was also significantly more difficult. Those with nocturnal enuresis construed wetting the bed as significantly more difficult. Boys were significantly more likely to view bedwetting as a more difficult problem for children than girls did.

Hagglof (1996) 1 and Hagglof (1998) 10 conducted a study of self-esteem before and after medical treatment in children with primary nocturnal enuresis (NE) and urinary incontinence (UI) in Sweden. One hundred and eleven children participated in the study, and 64 healthy children without any NEUI symptoms were recruited as controls. Among the children with NEUI, 25 had primary NE, 13 primary UI, 22 had a combination of both. Six children had secondary urinary dysfunction. Two questionnaires were given to the parents, and a clinical examination and psychological test were performed. Self-esteem was measured using the Swedish self-esteem inventory “I think I am”. Children with NE received either an enuresis alarm or desmopressin while the UI children received specific training programs focusing on regular voiding habits.

Children in the NEUI group scored significantly lower than controls in terms of mental health (p<0.001), skills (p<0.01), relation to parents (p<0.05) and relation to others (p<0.001), but not for body image. Additionally, it was shown that children with primary day NEUI had the lowest self-esteem scores (10.1), followed by combined primary day and night (11.9), primary night (13.4) and secondary NEUI (16.0). Despite not being significant, a tendency was found for boys to have lower self-esteem scores than girls (p<0.08) and NEUI children from lower socio-economic groups had lower scores than children from higher socio-economic groups (p<0.1).

Children with secondary forms had the highest (which were still below normal), while those with primary day- time incontinence had the lowest self-esteem scores.

After 6 months treatment, NEUI children that had become completely dry (for at least one month) had significantly higher self-esteem scores compared to children with persisting NEUI (mean 23.1 and 17.3, respectively, p<0.001).

Collier (2002) 8 collected data as part of a 2.5 year longitudinal study to assess nocturnal enuresis in children aged 6–16 year who presented to 15 community enuresis clinics. One hundred and fourteen children were enrolled into the study. There were 72 boys with a median age of 9.00 years and 42 girls with a median age of 9.5 years. Children had to be aged over 7 years, wetting at least 1 night a week, have a normal clinical examination and no neurological or urological cause for the enuresis, and parental and child consent to participate in the study. Clinical details, information regarding onset of wetting, number of wet nights, extent of wetting, and presence of urinary tract infections were recorded. Children also completed the Butler Self-Image Profile and the Coopersmith Self-Esteem inventory.

Girls had significantly higher scores (p=0.008) on positive self-image compared to boys. Those with secondary enuresis also scored higher on positive self-image compared with those with primary nocturnal enuresis (p=0.02). Severity of wetting was statistically associated with negative self-image scores (p=0.01). However the authors pointed out that this was not a clinically meaningful relationship, as less than 7% of the variance of self-image scores could be attributed to the severity of the wetting.

Robinson (2003) 28 measured different aspects of self-construing in children aged between 7 to 16 years with primary mono-symptomatic nocturnal enuresis. This study was conducted in England. To be included children also had to wet the bed at least three times a week; to not be on any treatment; not have daytime wetting; not have any urological nor neurological cause for the enuresis; and attend mainstream education. Children with nocturnal enuresis were recruited from a paediatric outpatient’s clinic and the control group was randomly selected from one primary and secondary school.

Children were given the Self-Image Profile, the Coopersmith Self-Esteem Inventory and the “I think I am”, which was translated from Swedish to English.

The authors found that the only significant difference (p=0.011) was the tendency for children with primary monosymptomatic nocturnal enuresis to construe themselves more negatively on the Butler Self Image Profile (SIP) when compared to a matched control group. No significant differences were found on self-esteem, self-identity or positive self-image.

Pugner (1997) 29 conducted a study to evaluate the costs of nocturnal enuresis to the health care system and families in 5 European countries. The authors only presented the results from 3 of these countries (Sweden, United Kingdom and Germany). To estimate typical consultation costs of enuretic children, 11 hospital consultants and 15 primary care clinicians were interviewed across the 5 countries. The study used Butler’s “self image profile” to assess self esteem in children.

The study showed that before children had treatment they reported feeling “different from others”, “lonely” and “shy”. The study suggested children with enuresis have a lower than average self esteem and suggests appropriate treatment is needed for children with nocturnal enuresis.

4.2.2. Children and Young People’s views and attitudes on the impact of nocturnal enuresis

Several interview and survey based studies were identified which considered the impact of nocturnal enuresis on children with nocturnal enuresis. Some observational studies were also retrieved. The studies focused on the children’s attitude to their bedwetting, the treatments and the success of treatments. The studies also considered the concern, worry, and psychological problems caused by having nocturnal enuresis.

Study characteristics

Joinson (2007) 5 investigated the psychological problems associated with bedwetting and combined (day and night) wetting in children aged around 7.5 years. Based on the reports from parents and children, the study compared the rate of internalising and externalising problems and problems with bullying and friendships in children with bedwetting, combined wetting, and in children with no wetting problems. They collected both wetting and parent-reported data from 8,242 questionnaires distributed to a cohort enrolled in the Avon Longitudinal Study of Parents and Children (ALSPAC). Child reported psychological measures were taken from a clinic attended by 7,171 children (age range 97–125 months).

Children were invited to attend a clinic, where they were interviewed using: a modified version of the Bullying and Friendship Interview Schedule; 11 items from the Self-Reported Antisocial Behaviour for Young Children Questionnaire; a reduced version of Harter’s Self-Perception Profile for Children; and five questions from the Cambridge Hormones and Moods Project Friendship Questionnaire.

Even though the child-reported outcomes were much less evident to suggest differences between the groups than with the parent-reported outcomes (please see section 1.3.3.1), the study reported that children with combined wetting had an increased risk of antisocial activities. Overall, the study found a higher parent-reported psychological problems in children with bedwetting and combined wetting compared with those with no wetting problems.

Wagner (1986) 30 collected self-reported data from 100 enuretic children (n=61 male and n=39 female) between the ages of 5 and 14 (median 8.3 years). The study was conducted in the USA. Participants were recruited through the local paediatric clinics, private physicians, and newspaper advertisements for a behaviourally based enuresis treatment program provided by 3 university outpatient clinics. All children had primary nocturnal enuresis, wetting night time only and wetting at least three nights per week.

The Child Attitude Scale for Nocturnal Enuresis was to understand how enuretic children viewed their problem. Parent ratings of the children’s behavioural adjustment were obtained using the Behavioural Problem Checklist.

Older children (8–14 years) were less likely to indicate that they woke up right away when they wet their bed at night (p<0.02). Children between the ages of 5 and 10 were less likely to report that their mothers made them take their sheets and wash them (p<0.03) compared to children of other ages. The youngest group (5–7 years) were most likely to report that their mothers would take responsibility for changing wet sheets in the morning (p<0.0001).

Most children (65%) were unhappy about their wetting, and all indicated that they would be very happy if they could become dry. All also wanted to stop wetting their bed, but 14% were not willing to do anything to get dry. Most children (96%) felt they could stop wetting when they were older. Children reported that their fathers (97%) and mothers (99%) would be happy if the wetting stopped. Most children (84%) reported that other children did not make fun of them because they wet the bed, however 48% indicated that friends were aware of their bedwetting problem.

Wolanczyk (2002) 31 conducted a study to assess the impact of enuresis on children with a Polish version of the Child Attitude Toward Illness Scale (CATIS). The study included children seen at the Urodynamic Laboratory of the Mother and Child Institute in Warsaw, Poland who had nocturnal enuresis and/or diurnal enuresis. Children had a mean age of 12.74 (SD 2.51) years, 31 children were male, 32 children had primary nocturnal enuresis, 9 children had primary nocturnal enuresis and diurnal enuresis, 3 children had secondary nocturnal enuresis and 1 child had secondary nocturnal enuresis and diurnal enuresis. 16 children were wet every night or day.

The study used a Polish version of the CATIS to consider children with enuresis attitudes towards their nocturnal enuresis and compared these results to CATIS scores previously recorded of children with asthma and heart disease.

The study showed for children with enuresis there was no statistically significant relationship between the CATIS score and the age of the children. Girls had statistically significantly lower scores than boys (p=0.03). The difference between older girls and boys was greater than between younger girls and boys. The study showed there was no statistically significant difference between children with nocturnal enuresis and children with diurnal enuresis.

The comparison of children with enuresis and children with asthma and heart disease showed children with enuresis had statistically significant lower scores than children with asthma and children with heart disease. There was no statistically significant difference between the scores of children with asthma and children with heart disease.

Morison (1998) 32 conducted interviews with 19 families and 20 young people to assess the experiences of “bedwetting from the perspectives of young people their parents and siblings”. The study included young people aged 4 to 17 years in Scotland who were being treated by health care professionals for nocturnal enuresis. To enable fair interviews for younger children, young children were asked to answer using a scale of faces.

The study divided the responses from the children in to 4 categories: acceptance and tolerance, ambivalence, proactive rejection and intolerance and resigned helplessness and hopelessness. Acceptance and tolerance was then subdivided in to primary unconcerned, happy, resigned pragmatic, optimistic pragmatic. Nearly all children in the study reported perceived helplessness and hopelessness which were identified as: repeated failures with treatment; unrewarded effort; the belief that most 3 year olds are able to be dry at night, making it look easy; and negative assessments of their bedwetting by family and others.

Stromgren (1990) 33 investigated whether young adults treated previously for nocturnal enuresis (mostly with a bed alarm) would display personality traits that could be related to the former enuresis and its treatment. In a 15 year follow up study, 25 of the 29 (14 girls and 15 boys) patients who were treated with a bed alarm as children (14 girls and 15 boys between 7–14 years old) and presumed to comprise all enuretic children in Samso (Denmark), were compared for their personality profiles with fifteen healthy controls matched for age and sex. The first assessment revealed a conduct disorder in only one boy and no signs of psychiatric disorder were found in the children. In 11 of 29 cases, at least one of the parents had suffered from enuresis in childhood or adolescence. All children were found to respond in some degree to the treatment with a bed alarm with 13 of them being fully recovered, and 13 exhibited less bedwetting.

In a follow up study, the Karolinska Scales of Personality test was employed to assess responders’ habitual feelings or behaviours when they were adults. Results from this study revealed that although adults treated for enuresis as children did not hold conscious opposition or aggression towards their family home or their parents, they experienced challenges on their adaptation to, and belonging in society. More specifically, the two areas found to differentiate those treated for nocturnal enuresis in their childhood from healthy matched controls were socialization and suspicion. In relation to their socialization, the following areas were more significantly impacted: running away from home as a child, constantly getting into difficult situations, resistance to parents, problems at school (scared of teachers and fear of being reprimanded), getting into trouble without being blamed, feeling of never having achance to get on in life, playing truant as a child. The area most affected in the breakdown of suspicion was the belief that other people were jealous of him/her.

Morison (2000) 2 conducted a survey to assess the parents’ and young peoples’ beliefs about treatment and outcomes of nocturnal enuresis. The study used the Family Perspective on Bed-Wetting Questionnaire (FPBWQ) to measure control beliefs and expected outcomes of treatment. The study followed up patients after 6 months of treatment. The study included 40 young people, 25 of which were male. The children had a mean age of 8 years, 95% wet the bed at least 3 nights a week and 60% wet the bed every night, 5% also had daytime wetting. The study stated that as only 5% of patients had daytime wetting it reflected the practice of inviting only monosymptomatic children to community nurse-led clinics.

60% of children expressed concern about bedwetting, 40% replied they did not know to the question on concern about bedwetting. Seventy percent of parents believed the people who they felt were most important thought bedwetting should have stopped, with theirs parents opinion mattering most. fourty three percent of children felt they could stop bedwetting. Most young people reported that effort was important in the success of a treatment, and 83% said they were willing to make the effort to become dry. The study reported the most children (68%) thought having the ability to become dry was important in success but only 38% said they thought they had the ability. Seventy eight percent of children said they did not know what would help them to become dry. The study reported a high consistency between answers from children where they reported they ’can’ stop wetting the bed and are ’able’ to stop wetting the bed.

Schober (2004) 34 conducted a study of 110 children assessed attachment psychopathology on the AAQ angry distress scale and the care givers dissociation scores. The study included children who were seen during scheduled appointments at a pediatric urologist’s office or at a pediatric clinic. The study compared 50 children with monosymptomatic nocturnal enuresis to 60 children without nocturnal enuresis, the children had a mean age of 11.7 years. The monosymptomatic nocturnal enuresis group had 26 boys, compared to the non-enuresis group which had 21 boys. The study measured attachment psychopathology on the AAQ angry distress scale and the care givers dissociation scores.

The study showed children with nocturnal enuresis had significantly higher scores on the AAQ angry distress scale, showing greater psychopathology, compared to children without nocturnal enuresis. There was no statistically significant difference in the scores between females and males, or between those who were breast fed and those who were not. There was no statistically significant difference between those who were being cared for by biological parents and those cared for by a guardian, although the AAQ score were higher showing greater psychopathology for those cared for by a guardian.

Landgraf (2004) 35 conducted a survey in 5 sites across the USA. The survey received 208 responses. Fifty six percent were female; the children had an age range of 5 to 17 years. Fifty-four percent were wet at night, 39.5% were wet during the night and day, 6.5% were wet during the day (3.8% was missing data). The questionnaires where mostly answered by the mothers of the children (88%). Fifty-four percent reported that their child wet at night only, compared to those for whom both daytime and nighttime wetting were indicated (40%). Isolated day time wetting was indicated in 7% of the sample. Sixty-nine percent of the parents reported that this was not their child’s first visit to a doctor for wetting. The study used the Child Impact Scale and Family Impact Scale to interpret the results of the survey. The Child Impact scale consisted of 14 items, 10 of which were specific to enuresis and its impact on child’s life during the past 4 weeks, with the remaining 4 being more general (e.g. “my child works to his/her potential”). The parent was asked to indicate the degree to which the statements/items reflected how life had been for his/her child during the past 4 weeks.

Statistically significant differences in Child Impact scores were observed for 4 attitude items: “wetting is a behavioral issue” (p=0.019); “there is a neurologic basis for wetting” (p=0.05); “my child will outgrow the problem” (p=0.05); and I’m concerned my child has a serious medical issue” (p=0.000). There were statistically significant differences for whether the child urinated at bedtime (p=0.029); and for the number of pads used (p=0.005). A marked difference was found for those using ≥2 pads versus no pads (p=0.004) and versus use of a single pad (p=0.005). A higher scale score was observed on the Child Impact scale for established parents (68.48) compared to those whom the physician reported as new to their care (68.98; p=0.013). A higher and statistically significant difference (p=0.039) was also observed on the Child Impact scale for girls (67.53) versus boys (63.99).

Van Tijen (1998) 36 explored the perceived stress of nocturnal enuresis in childhood and adolescence through the patient’s severity rating of nocturnal enuresis in relation to other critical life events. This was a questionnaire based study of 98 children with NE and 124 controls, aged 8–18 years. The sample was divided in two age groups; one group was consisted of those aged 8–12 years and the other group of adolescents aged 12–18 years. Participants in the study were presented with the Critical Life Events Picture Test (CLEPT), a test designed for this study to investigate the child’s perception of NE compared to 10 other critical events: divorce, strident parental fights, being teased, being excluded from the group, moving house, undergoing surgery, academic attainment, having little money to spend, being extremely short and having to wear glasses. For bed wetters, the severity of nocturnal enuresis was scored third in relation to its psychological impact by the primary school children, after divorce and parental fights and second with parental fights by adolescents. On the opposite, the controls did not attribute major importance to nocturnal enuresis.

4.2.3. Family/carers views and attitudes on the impact of nocturnal enuresis on children and young people

Several interview and survey based studies were identified which considered the impact of nocturnal enuresis on parents, carers and the family of children with nocturnal enuresis. The studies focused on the parent’s and carer’s attitude to the child and their bedwetting, the concern and worry caused by the child having nocturnal enuresis and the parental intolerance to the condition.

Study characteristics

De Bryune (2009) 37 assessed whether parental stress was related to behaviour in children between the ages of 6 and 12 years with nonmonosymptomatic nocturnal enuresis (NME). Children were diagnosed with NME using a 14 day diary and noninvasive standardized screening and if applicable by daytime incontinence according to ICCS terminology. A total of 47 boys (60.3%) and 31 girls (39.7%) with a mean ± SD age of 8.42 ±1.91 years (range 5 to 13 years) were recruited. The control group consisted of 110 children from a regular primary school. Children with enuresis were excluded from this group. The control group consisted of 56 boys (50.9%) and 54 girls (49.1%) with a mean age of 9.07 ± 1.93 years (range 5 to 12 years). Children were compared using the Child Behaviour Checklist (CBCL), the Disruptive Behaviour Disorders Rating Scale (DBDRS). Parental stress was measured with the Parenting Stress Index (PSI).

On the CBCL, mothers judged their children with NME as more withdrawn (p=0.03); more aggressive (p=0.002); and more inattentive (p=0.01) than mothers of the control group. Also, mothers of the study group reported significantly higher scores on the externalising (p=0.01) and total problem broadband scale (p=0.004). No significant differences between study and control groups were found in paternal reports. Maternal reports showed a significant effect of gender on child problem behaviour (p≤ 0.01) since mothers reported more attention problems in boys than in girls (p≤ 0.05).

Children of parents with NME showed higher scores on the DBDRS subscales inattention, hyperactivity/impulsivity and oppositional defiant disorder than those of parents of nonenuretic children.

Parental reports showed a significant main of effect of gender since mothers and fathers reported more attention problems in boys (p ≤ 0.05). A lower SES was associated with higher scores on conduct disorder (p≤ 0.01).

A significant group difference was found on all 3 PSI scales. Children of parents of children with NME showed significantly higher stress scores on the parental and child characteristics domains, and total stress index than parents of nonenuretic children. Mothers of boys showed higher stress scores on the child characteristics domain than mothers of girls (p≤ 0.01). Paternal reports did not show a significant gender effect.

Joinson (2007) 5 investigated the psychological problems associated with bedwetting and combined (day and night) wetting in children aged around 7.5 years. They collected both wetting and parent-reported data from 8,242 questionnaires distributed to a cohort enrolled in the Avon Longitudinal Study of Parents and Children (ALSPAC). The rates of psychological problems were compared in children with bedwetting, combined wetting, and in children with no wetting problems. The self-report questionnaire given to parents beyond several question on the child’s wetting also included ‘The Development and Well-Being Assessment’, comprising questions related to internalising and externalising disorder in children occurring in the present and recent past. The study found a higher rate of parent-reported psychological problems in children with bedwetting and combined wetting compared with those with no wetting problems. This was evident for most outcomes, particularly attention/activity problems, oppositional behaviour, and conduct problems. The exception was social fears and sadness/depression where the combined group were at no greater risk than the controls but rates of these problems were elevated in children who suffered from bedwetting alone. Children with combined wetting were particularly at risk for externalizing problems.

Wagner (1986) 30 collected self-report data from 100 enuretic children (n=61 male and n=39 female) between the ages of 5 and 14 (median 8.3 years). The study was conduced in the USA. Participants were recruited through the local paediatric clinics, private physicians, and newspaper advertisements for a behaviourally based enuresis treatment program provided by 3 university outpatient clinics. All children had primary nocturnal enuresis, wetting night time only and wetting at least three nights per week.

The Child Attitude Scale for Nocturnal Enuresis was to understand how enuretic children viewed their problem. Parent ratings of the children’s behavioural adjustment were obtained using the Behavioural Problem Checklist.

The study showed most parents (77% of fathers and 75% of mothers) believed their child could become dry if they really wanted to. Most parents did not get angry at their child for wetting the bed (77% of fathers and 66% of mothers). These differences (between mothers and fathers) were not significantly different although the study reports there was a trend for mothers to be angry more often than fathers were with the child wetting the bed.

Foxman (1986) 38 described the impact of nocturnal enuresis on children as perceived by the parents. This description was based on the Rand Health Insurance Experiment, a US large population based study which considered the prevalence, perceived impact and treatments available for children with nocturnal enuresis. The study included 2756 families and enrolled 7706 individuals, 70% were followed for 3 years and 30% for 5 years. Families were included if they earned less than $54,000 per year, were not eligible for medicare. The study was conducted in six towns in the USA: Dayton, OH; Seattle, WA; Fitchburg and Leominster, MA; Franklin county, MA; Charleston, SC and Georgetown County, SC. The Rand Health Insurance Experiment conducted a questionnaire between 1975 and 1976. As part of the questionnaire the parents were asked one question about the impact of nocturnal enuresis on themselves: “during the past 3 months, how much has this child’s enuresis worried or concerned you?”

The question was answered on a scale of 1 to 4, with 1 being “none at all” and 4 being “a great deal”. The result of the question showed for parental concern 17% worried “a great deal”, 46% “some or a little” and 38% said it did not concern them at all.

Morison (1998) 32 conducted interviews with 19 families and 20 young people to assess the experiences of “bedwetting from the perspectives of young people their parents and siblings”. The study included young people aged 4 to 17 years in Scotland who were being treated by health care professionals for nocturnal enuresis. To enable fair interviews for younger children, young children were asked to answer using a scale of faces.

The study divided the responses from the parents in to 3 categories: acceptance and tolerance, ambivalence and rejection and intolerance. The study showed parents whose overall attitude was “acceptance and tolerance” believed the child was helpless stating the child could not control their bladder at night. “Acceptance and tolerance” was described as the parents being willing to help their child become dry at night, unless they knew that due to pathological reasons the child would never become dry at night. However within this group of parents there were different forms of acceptance and tolerance, those who had primary “unconditional acceptance and tolerance” where parents believed they could not help the child at the present time but the situation would change with time. “Transitional acceptance and tolerance” where the parent believes the situation will change soon. “Resigned acceptance and tolerance” where the parent believes the situation can not change. “Optimistic acceptance and tolerance” where the parent believes the situation will soon change for the better.

The study also showed some parents had an “ambivalent” attitude towards bedwetting where they believed the bedwetting situation could only be changed by the child themselves. Parents who had “rejection and intolerance” where the parent’s believed the bedwetting was within the child’s control and therefore demonstrated frustration and anger in relation to the bedwetting.

Morison (2000) 2 conducted a survey to assess the parents’ and young peoples’ beliefs about treatment and outcomes of nocturnal enuresis. The study used the “Family Perspective on Bed-Wetting Questionnaire (FPBWQ) to measure control beliefs and expected outcomes of treatment. The study followed up patients after 6 months of treatment. The study included 40 young people, 25 of which were male.

The children had a mean age of 8 years, 95% wet the bed at least 3 nights a week and 60% wet the bed every night, 5% also had daytime wetting. The study stated that as only 5% of patients had daytime wetting it reflected the practice of inviting only monosyptomatic children to community nurse-led clinics.

Most parents expressed concern about the bedwetting, 57% of parents believed the people who they felt were most important thought bedwetting should have stopped. The study compared the parent’s responses to the child’s response and showed parents were more optimistic than the child about the child’s ability to become dry. Fourty three percent of parents reported their child was not trying hard enough to become dry, and at the 6 month follow up the relationship between this and the child failing treatment was significant (p = 0.027).

Sixteen percent of parents reported they were too busy to help their child with the treatments for nocturnal enuresis. The study reported that if parents made more time available to help their children there may be fewer early drop outs. Seventy five percent of parents said they felt healthcare professionals would be able to help their child become dry but 27% felt healthcare professionals who had previously treated their child were running out of methods to treat their child.

Schober (2004) 34 conducted a study of 110 children and assessed attachment psychopathology on the AAQ angry distress scale and the care givers dissociation scores. The study included children who were seen during scheduled appointments at a pediatric urologist’s office or at a pediatric clinic. The study compared 50 children with monosymptomatic nocturnal enuresis to 60 children without nocturnal enuresis, the children had a mean age of 11.7 years. The monosymptomatic nocturnal enuresis group had 26 boys, compared to the non-enuresis group which had 21 boys. The study measured attachment psychopathology on the AAQ angry distress scale and the care givers dissociation scores.

The study showed there was no statistically significant difference in the care givers dissociation scores between carers of children with nocturnal enuresis (5.82 SD 5.74) and carers of children without nocturnal enuresis (3.71 SD 3.85).

Landgraf (2004) 35 conducted a survey in 5 sites across the USA. The survey received 208 responses. Fifty-six percent were female; the children had an age range of 5 to 17 years. Fifty-four percent were wet at nights, 39.5% were wet during the night and day, 6.5% were wet during the day (3.8% was missing data). The questionnaires where mostly answered by the mothers of the children (88%). Fifty-four percent reported that their child wet at night only compared to those for whom both daytime and nighttime wetting were indicated (40%). Isolated daytime wetting was indicated in 7% of the sample. Sixty-nine percent of the parents reported that this was not their child’s first visit to a doctor for wetting. The study used the Child Impact Scale and Family Impact Scale to interpret the results of the survey. The Family Impact scale included 17 items. The parent was asked to indicate how strongly each statement/item reflected the situation for them personally, at home, and with their family. All items were tailored to assess impact of enuresis on family relationships and activities (e.g. “relatives and family members are patient and tolerant about the problem”).

There were statistically significant differences on the Parent Impact scale for all 6 of the global items (child ability to cope; family frustration; how often success was experienced; child commitment; family cohesion; and treatment success in past 4 weeks) with the p values ranging from 0.021 to 0.000. Differences were significant for 5 of the 7 attitude statements (child could control if tried harder; wetting problem a behavioral issue; having a neurological basis for wetting; wetting being a significant health problem; and being concerned that the child had a serious medical issue). The p values ranged from 0.026 to 0.001.

There were also statistically significant differences on the Parent Impact scale for whether the child urinated at bedtime (p=0.002); and for the number of pads used (p=0.011). A marked difference was found for those using ≥2 pads versus no pads (p=0.003) and versus use of a single pad (p=0.012).

Parental perceptions of nocturnal enuresis were explored in a collaborative study of 1379 children aged 4 years or older who were patients in nine medical centres in USA (Haque et al, 1981) 39. One in four children (25.1%) was found to be enuretic. Each medical centre served the urban poor, although some centres had as much as 25% middle class population. The majority of population were blacks (57%), 27% white and the remainder mostly Hispanics. The vast majority (87%) of parents answering the questionnaires were mothers. Child’s age of expected dryness differed significantly between parents of children with enuresis (mean age 3.18 years) and parents of children without enuresis (2.61 years).

It seemed that the experiences of parents of bed wetters led them to allow more latitude in their expectations for achieving dryness. However, bedwetting was expressed as a problem by the large majority of both groups (61%) with the less educated parents being more worried and troubled about bed wetting and its associated effects compared to more educated parents. Parental educational level was also related to the management of bedwetting; parents with only a school grade education punished more and sought more often medical advice about their children’s bedwetting problem than the parents with higher education. On the contrast, parental educational level was not related to beliefs about bedwetting causes. More than one third of parents of both groups considered that enuresis has an emotional cause, with physical causes being ranked lower than emotional causes or heavy sleeping. Lastly, more than half of the parents failed to seek help from physicians at any time in the past, something that may have resulted from lack of confidence in the physician’s ability to solve the problem or lack of desire to deal with enuresis.

Chao (1997) 40 addressed the parental perspectives of primary monosymptomatic nocturnal enuresis (PMNE) as part of a multi-centre clinical trial on the use of oral desmopressin for the treatment of PMNE in children conducted in Singapore. Thirty patients were studied. Inclusion criteria was: age ranging from 7 to 16 years; present frequent bedwetting of at least 6 nights out of 2 weeks prior to the study; and absence of diurnal incontinence and urinary tract infection (excluded by urine culture).

Screening questionnaires were used during history taking in the initial clinic visits from parents and answers were recorded by the paediatricians on a one-to-one basis.

Patients had a mean age of 10.1 years, and there were 17 male and 13 females. Chinese ethnicity was predominant (70%), followed by 20% Indians, 6.7% Malays and 3.3% Eurasian. Seventeen (56.7%) patients had a family history of PMNE with 6 (35.5%) of them having 2 or more family members being affected.

Fifty percent of parents felt that PMNE was due to a maturational delay and another 50% of then thought that it was caused by deep sleep in the child who was unable to wake up to void. Thirteen (43.3%) parents felt that the problem was familial and 43.3% felt that it was due to behavioural problems in the child-being lazy, difficult or defiant. Eight (26.7%) parents blamed excessive fluid intake at night. Ninety percent of parents sought medical treatment because of restrictions on outdoor activities and twenty-six (86.7%) wanted a break from the constant laundry and cleaning of the aftermath. Fourteen parents (46.7%) sought treatment because of disrupted sleep for the household. PMNE was seen as a social stigma in 83.3% of patients.

4.2.4. Domestic violence against children and young people with nocturnal enuresis

Two retrieved studies examined the association between bedwetting and punishment and domestic violence.

Sapi (2009) 6 conducted a descriptive study involving 149 patients aged from 6 to 18 years (mean age 9.1±3.8), that described the frequency of domestic violence associated with episodes or urine leakage in children with primary monosymptomatic nocturnal enuresis (PMNE) and to describe the associated risk factors. Patients aged from 10 to 19 years were considered adolescents according to the classification of the World Health Organisation (WHO). PMNE was defined according to the International Children’s Continence Society. Patients attended the pediatric outpatient clinical or the Centre of Study on Adolescent Health in Rio de Janeiro, Brazil, for a routine appointment with a pediatric urologist. After the medical visit, patients with PMNE were invited to participate in the study.

A semi-structured interview was administered by medical students involved in undergraduate scientific research and by pediatric urologists. At a first stage, the interview was done with the child or adolescent while one or more guardians were present. Subsequently, the semi-structured interview was conducted to the patient alone in an environment amenable to the playful activities. During this phase, data related to domestic relationships, circumstances and characteristics of the domestic violence and people involved in the aggressive events were collected. Patients were asked to provide the following data: age, degree of kinship and education level of the people who lived with the patients. Abusers were also identified. Punishment due to urinary incontinence was analysed regarding frequency and type, and was defined as: verbal; physical punishment without physical contact; and physical punishment with physical contact.

The sample had a frequency of 59.7% (n=89) of boys and 40.3% (n=60) of girls. There was not a significant association between sex and incidence of punishment due to episodes of nocturnal incontinence (p=0.544).

The presence of aggression aimed at punishing was detected in 132 patients (88.6%), and in all these cases there was verbal punishment. Physical punishment without physical contact (e.g. forced to take a cold shower, to wash up the wet sheets, to stand up for the rest of the night) occurred in 50.8% (n=67) of the cases, while physical punishment with physical contact account for 48.5% (n=64) of the cases.

The rate of violence with physical contact was significantly higher against children than adolescents (p=0.001; RR=1.31; 95%CI 1.12–1.52). The main abuser was the mother (87.9%), and in 14.4% of the cases, the aggression involved more than one person who lived with the patient. In 88.4% of the cases, there were daily aggressive events.

One child had a severe genital lesion caused by burning, and a reconstructive surgery was needed to restore genital integrity.

The study reported that there was a significant correlation (p=0.043, r=−0.768) between the guardians’ educational level and punishment severity. Patients who lived with low-educated abusers (less than 8 years of schooling) were victims of a higher rate of punishment with physical contact. All guardians reported their dissatisfaction regarding the patient’s episodes or urine leakage.

A cross-sectional study conducted by Can (2004) 41 in Turkey in the 5–17 years age group included at least 600 children. A face-to-face interview of 889 mothers was carried out. In the questionnaire, the existence, frequency and risk factors of enuresis were questioned in detail and the parental reactions to the child’s enuresis were also assessed. The prevalence of nocturnal enuresis was 17.9% (n=159). Of 154 mothers, 11.7% (n=18) offered psychological support to their child and tried to find a solution to the problem. It was also found that from 133 interviewed mothers, 42.1% of the children were spanked, 40.6% of the children suffered neglect, 12.8% were beaten and 4.5% suffered swaddling. It was also found that the sex of the child (p=0.660) and the educational level of mothers (p=0.435) were not significant factors.

4.2.5. Economic evidence

The economic literature identified one study which aimed to assess the financial impact of nocturnal enuresis on the health service and families. The study was not a full economic evaluation and therefore was assessed as not applicable and as having very serious limitations. However, its focus on the costs to the family of different treatment strategies compared to one another and to no treatment was considered useful to explore important monetary impacts of bedwetting and treatment on the family.

Study characteristics

Pugner (1997) 29 conducted a study to evaluate the costs of nocturnal enuresis to the health care system and families in 5 European countries. The authors only presented the results from 3 of these countries (Sweden, United Kingdom and Germany). To estimate typical consultation costs of enuretic children, 11 hospital consultants and 15 primary care clinicians were interviewed across the 5 countries. They were asked about their individual approaches to management in the first 12 months from commencing treatment.

To assess the family costs associated with enuresis, 19 children with primary nocturnal enuresis (aged 6–12 years) were selected for inclusion by leading experts in the field. At enrollment, 6 of the children were using an enuresis alarm, 6 were receiving treatment with desmopressin and 7 were receiving no treatment or were using diapers. Parents completed a questionnaire designed to identify direct and indirect costs to the family as a consequence of their child’s enuresis. Direct costs included expenditure on washing and drying, extra bed clothes, underwear, pyjamas and mattresses as well as travel costs to consultations. Indirect costs included time spent performing extra housework and consultation visits that prevented the carer from pursuing other activities. Also included was any external help required during periods when the carer was ill.

Three case studies were conducted in the UK. Of these, one child was treated with desmopressin spray, one child used an enuresis alarm and one received no treatment. 3-month costs to the health service and families are presented. Use of an alarm generated the greatest overall costs (£570), because there was no reduction in the number of wet nights after treatment initiation. Seventy-nine percent of these costs were borne directly or indirectly by the family. Because the child continued to wet 7 nights per week, even with alarm treatment, there was a high level of washing and drying. The alarm was also purchased directly by the family. A much lower cost for the family can be expected where the alarm is used successfully. The child receiving desmopressin incurred moderate costs (£255), 96% of which were costs to the National Health Service. The family costs amounted to £9 of direct expenditure because the treatment was successful at achieving complete dryness. The child receiving no treatment for his enuresis wet the bed infrequently (once per week) and thus incurred relatively low costs (£179), 32% of which was borne by the family. A child who wet the bed most nights would likely show an increased impact on the family economy.

The case studies from Sweden and Germany showed similar results. For patients undergoing treatment with an enuresis alarm, families bore just over half of all costs, around 51%. For patients being treated with desmopressin, between 72% and 96% of costs were borne by the health service. Finally, among patients not undergoing treatment, families paid about 80% of all costs, mostly in the form of washing and drying. In one Swedish case study, the family using diapers whilst waiting for treatment incurred low costs as no washing or drying was necessary.

The case studies demonstrate the importance of dryness in monetary terms for the family. Factors influencing the costs of enuresis include the number of wet nights per week that lead to washing and drying and the costs of treatment itself. In those case studies where the child has more than three wet nights per week, the ‘no treatment’ option represents the greatest cost burden to the family. Also, treatment with an enuresis alarm requires a high degree of motivation from the family and the child and significant costs continue to be placed on the family as the child gradually improves. Finally, because treatment with desmopressin has an immediate effect in those who respond, costs borne by the family are dramatically reduced.

4.2.6. Evidence statements

Theunis (2002) 9; Hagglof (1997) 1

  • One quasi-experimental study found that children with bedwetting had lower self-esteem than non-bedwetting children, however one controlled study found that becoming dry increased self-esteem.
  • One quasi-experimental study found children with bedwetting reported lower satisfaction with their looks and another controlled study found they construed themselves more negatively on self-image.

Hagglof (1997) 1; Collier (2002) 8

  • One controlled study found that children with primary day wetting had lower self esteem, followed by children with primary day and night wetting, then children with primary night wetting and then secondary wetting. A longitudinal study similarly found that children with secondary wetting had a higher positive self-image.

Joinson (2007) 5; Hagglof (1997) 1; De Bryune (2009) 37; Pugner (1997) 29; Schober (2004) 34;

  • Two surveys of parents reported higher psychological problems in bed wetters, one of the surveys reported children to be more withdrawn, aggressive and inattentive. Children in one cost-evaluation study reported feeling different from others, lonely and shy. A controlled study found lower scores on mental health, skills and relations to parents and others. Another study found higher psychopathology scores.

Theunis (2002) 9

  • Younger children with bedwetting (8–9 years) perceived their competence in scholastic skills and behavioural conduct as higher than 10–12 year olds.

Collier (2002) 8; Butler (2007) 7, Wolanczyk (2002) 31

  • In one survey study girls with bedwetting had higher positive self-image scores than bedwetting boys, in another study (survey) boys viewed bedwetting as more difficult, and in another study girls had a more negative attitude towards bedwetting than boys (survey).

Morison (1998) 32

  • In one interview study children reported perceived helplessness and hopelessness due to repeated treatment failure, unrewarded effort, belief that younger children could be dry at night and negative assessments from family and others.

Morison (2000) 2; Wagner (1986) 30

  • Children in one questionnaire study believed they could become dry when they were older. A survey of young people believed effort was important in treatment success and were willing to make the effort but were worried in their ability and most did not know what would make them dry. Most parents showed concern with bedwetting and in two surveys thought their child could become dry if they really wanted to, which in one study was significantly related to the child failing treatment.

Landgraf (2004) 35

  • In one survey study most parents did not get angry because of bedwetting and in another survey study it was found that less educated parents were more likely to punish the child.

Sapi (2009) 6; Can (2004) 41

  • In one qualitative study and one cross sectional study it was found that many of the parents used aggression to punish, often with physical punishment with or without physical contact and sometimes neglect. These studies took place in Turkey and Brazil.

4.2.7. Evidence to recommendations

Relative values of different outcomes

The findings of this evidence review were descriptive findings indicating the impact of bedwetting on children and their families.

Trade off between clinical benefit and harms

Not relevant

Economic considerations

The cost impact of bedwetting on families can be considerable. The costs of doing additional laundry, buying extra linens and replacing mattresses are among the many extra costs families face in managing bedwetting. Children, young people and their families also report bedwetting to have a negative impact on their overall quality of life. Seeking treatment for a child or young person’s bedwetting is likely to help to alleviate some of the financial burden and improve the quality of life for children, young people and their parents and carers.

Cost-effectiveness modeling undertaken for the guideline indicates that from the perspective of the NHS, treating children and young people with bedwetting is cost-effective compared to not treating. This conclusion applies to children commencing appropriate treatment at ages as young as 5 years. The GDG recognise that a recommendation to treat younger children, where appropriate, is likely to represent a considerable cost impact to the NHS, but they felt that this group could benefit from advice about fluids and toileting and potentially medical treatment.

Quality of evidence (this includes clinical and economic)

The studies examining constructs such as self-esteem used a variety of different instruments and many instruments and questionnaires used had not been validated. The studies particularly those on punishment and violence were from non-UK settings which might not be directly relevant to the UK population.

Other considerations

The GDG considered that bedwetting and other wetting problems have an impact not only on the child and young person with bedwetting but on all other members of the family. They considered that living with a child with bedwetting can have a considerable impact on family finances which is often not recognised and not including when costs and benefits of treatment are considered.

The GDG considered the following findings of the review particularly significant: bedwetting can affect a child or young person’s self esteem, can cause negative feelings and behaviours and can limit social opportunities during important periods of self development. Bedwetting causes stress to parents/carers; a minority of parents/guardians punish their children for bedwetting, either verbally, or to a lesser extent, physically. Self esteem scores increase following successful treatment, time commitment from parents has an effect upon treatment dropout, boys seem to rate bedwetting as more difficult than girls and boys have lower self esteem scores than girls. Bedwetting has an effect upon the family’s budget/economy.

The following was written by one of the patient/carer members:

“From a family with experience of nocturnal enuresis, one of the most significant paragraphs I read in this section was ’Most children (65%) were unhappy about their wetting, and all indicated that they would be very happy if they could become dry. All also wanted to stop wetting their bed, but 14% were not willing to do anything to get dry. Most children (96%) felt they could stop wetting when they were older. Children reported that their fathers (97%) and mothers (99%) would be happy if the wetting stopped. Most children (84%) reported that other children did not make fun of them because they wet the bed, however 48% indicated that friends were aware of their bedwetting problem.’ Our son falls into the 14% who won't do anything to get dry (typical teenage boy!) although he does take desmopressin and would probably try acupuncture. He is also one of the 48% whose friends are aware.

I also believe the following paragraph is significant: ’Sixteen percent of parents reported they were too busy to help their child with the treatments for nocturnal enuresis. The study reported that if parents made more time available to help their children there might be fewer early drop outs. Seventy five percent of parents said they felt healthcare professionals would be able to help their child become dry but 27% felt healthcare professionals who had previously treated their child were running out of methods to treat their child.‘ It raises the question about whether we as parents may be contributing to the number of treatment resistant children! This assumes a link between dropout and treatment resistance which may not be justified. Is Morrison’s statement about the link between parental time and early dropout is a valid one? I am sure we are not unique in being a family with two children who have nocturnal enuresis. The ’double whammy ’ impact of this on children/families should not be underestimated in terms of emotional and financial costs.”

The GDG wished to have a positive recommendation not to exclude children under the age of 7 from consideration of treatment. The impact on children and families may equally be felt in those under 7 years and these children are likely to benefit from advice about fluids and toileting and depending on the child may also be able to cope with alarm or medical treatment. The evidence reviews on interventions informed this recommendation but more specific recommendations about individual treatments for children under 7 are included in relevant chapters.

The GDG discussed whether it was appropriate to include the studies of domestic violence in the review. They considered that the definitions of domestic violence varied and that the practices described may be particular to the cultural contexts of the studies (one was conducted in Brazil and the other in Turkey). However the GDG reported seeing children and young people from a wide variety of cultural backgrounds and that this was likely to be increasingly common given the multicultural nature of many areas of England and Wales. Under these circumstances the GDG considered that health care professionals should be alert to possibility of maltreatment and agreed to include these reviews in the evidence considered. They decided therefore to cross refer to recommendations from the maltreatment guideline (‘When to suspect child maltreatment’, NICE clinical guideline 89). The GDG considered it vital that healthcare professionals explore with parents and carers how they were coping with the impact of bedwetting and in particular that they be alert to anger and negativity directed towards the child or young person. These need to be addressed in theirown right but may also influence the choice of treatment as e.g. alarm treatment may be too onerous for some families.

4.2.8. Recommendations

4.2.8.1.

Inform children and young people with bedwetting and their parents or carers that bedwetting is not the child or young person’s fault and that punitive measures should not be used in the management of bedwetting. [1.1.1]

4.2.8.2.

Offer support, assessment and appropriate treatment tailored to the circumstances and needs of the child and young person and parents or carers. [1.1.2]

4.2.8.3.

Do not exclude younger children (for example, those under 7 years) from the management of bedwetting on the basis of age alone. [1.1.3]

4.2.8.4.

Offer information and details of support groups to children and young people being treated for bedwetting and their parents and carers. [1.2.2]

4.2.8.5.

Offer information about practical ways to reduce the impact of bedwetting before and during treatment (for example, using bed protection and washable and disposable products).[1.2.3]

4.2.8.6.

Discuss with the parents or carers whether they need support, particularly if they are having difficulty coping with the burden of bedwetting, or if they are expressing anger, negativity or blame towards the child. [1.3.17]

4.2.8.7.

Consider child maltreatment6 if:

  • a child or young person is reported to be deliberately bedwetting
  • parents or carers are seen or reported to punish a child or young person for bedwetting despite professional advice that the symptom is involuntary
  • a child or young person has secondary daytime wetting or secondary bedwetting that persists despite adequate assessment and management unless there is a medical explanation (for example, urinary tract infection) or clearly identified stressful situation that is not part of maltreatment (for example, bereavement, parental separation).[1.3.18]

[This recommendation is adapted from ‘When to suspect child maltreatment’ (NICE clinical guideline 89).]

Footnotes

6

For the purposes of the child mistreatment guideline, to consider child maltreatment means that maltreatment is one possible explanation for the alerting feature or is included in the differential diagnosis.

Copyright © 2010, National Clinical Guideline Centre.

Apart from any fair dealing for the purposes of research or private study, criticism or review, as permitted under the Copyright, Designs and Patents Act, 1988, no part of this publication may be reproduced, stored or transmitted in any form or by any means, without the prior written permission of the publisher or, in the case of reprographic reproduction, in accordance with the terms of licences issued by the Copyright Licensing Agency in the UK. Enquiries concerning reproduction outside the terms stated here should be sent to the publisher at the UK address printed on this page.

The use of registered names, trademarks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant laws and regulations and therefore for general use.

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