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On the CBCL, mothers judged their children with NME as more withdrawn (p=0.03); more aggressive (p=0.002); and more inattentive (p=0.01) than mothers of the control group.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.