What do children say about daytime and nighttime incontinence? – a qualitative exploration of 30 children with urinary incontinence

Introduction

Pediatric urinary incontinence (UI) is a common condition affecting up to 20% of school aged children ^1–6. Although researchers have focused primarily on the anatomic and functional problems underlying UI, less is known about the impact of UI on the children who experience it. The majority of our knowledge about the attitudes and feelings of children with UI derives from general or disease-specific questionnaires assess this population^7–12. While these survey instruments have the advantage of querying large groups of children with a uniform tool, they are limited in the level of detail provided by the child with UI.

By contrast, qualitative studies have the advantage of highlighting experience and meaning based on a child’s unique situation or experience with UI¹³. In doing so, increased detail and richness about the patient experience with UI can be gained. One prior study explored the experience of children and parents of children with UI secondary to spina bifida, and found that their experience ranged from minimal impact of UI on their day-to-day living to significant social isolation, rejection, and stigma¹⁴. Direct patient quotations provided an in-depth portrait of how UI affects these children. There is limited information from qualitative studies highlighting the experiences of children with functional UI (that is, UI not attributable to neurologic or anatomic abnormalities). What are the children’s fears, concerns, and emotions? What do they worry about, if anything? At present, there are a paucity of studies on a qualitative exploration of children with UI. The information gained from such a study will augment our existing knowledge and provide insights into how the management of this condition could be improved. Further understanding will allow us to engage in shared decision making, set patient and family expectations in regards to treatment and resolution and help patient and families cope with their condition throughout the treatment process.

The goal of this study is to use qualitative analysis to describe the experiences of 30 children with functional UI. In particular, we choose to focus on the impact of UI on participants’ lives, what coping strategies incontinent children use, and the effect of UI on a child’s emotions.

Methods

Study participants

After institutional review board approval, semi-structured interviews of children with UI were conducted between June 2013 and December 2015. Eligibility criteria included age 8-17 years, current or recent past history of either daytime and/or nighttime UI, fluency in English, and being developmentally able and willing to participate in an interview. This was informally screened by the referring provider who determined if the potential participant had the maturity and attention span to participate in a 30-minute interview. Participants were recruited from the pediatric urology clinics at a tertiary care pediatric urology referral center and could have received therapy for UI including behavioral modification, constipation management, medication, and/or enuretic alarm therapy. A purposive sample of 16 males and 14 females was recruited. Purposive sampling is nonprobability, deliberate sampling used to understand the experience of a specific population¹⁵. Participants were grouped into childhood (ages 8 – 12) and adolescence (13 years old and over) for comparison. Structured questionnaires were not used to diagnose anxiety or depression or to rate self-esteem. Rather, a specific line of questions like whether or not their UI caused participants to worry, made them concerned about activities, or feared having an accident were asked to discern if anxiety was present. Questions such as whether UI caused participants to feel sad or unhappy or feel like they wanted to cry were used to determine if depression was present. The level of self-esteem was assessed by participants stating their confidence in their ability to play sports, do school work, or make friends. Children with either an anatomic and/or neurologic etiology for UI were excluded from the study. A $50 remuneration was provided to compensate participants for their participation.

Data collection

The semi-structured interview guide was generated by two pediatric urologists (AJS, CPN), a sociologist (KK) and survey methodologists, and refined after pretesting in 3 children with UI. We conducted one-on-one interviews in private locations. Parents of children under 12 years were invited to be present in the same room as the interview. Questions were open-ended with follow-up prompts used to ask for further clarification of a statement, with pointed questioning used for particular areas of interest not mentioned by the participants. Table 1 provides examples of questions and prompts from the interview guide. The complete guide is in the appendix. The participant and interviewer genders were concordant. Interviews were conducted in the hospital near the urology clinic, digitally recorded, and transcribed verbatim. Interviews ranged from 20 to 45 minutes in length.

Table 1.

Sample questions from semi-structured interviews

General	Now I’d like to talk about accidents. You are an expert and know everything about accidents. Now pretend that I have never had any accidents, so it’s really hard for me to imagine what your experience has been like. Can you describe what it’s like to have accidents? I want to get an idea of what happens with a typical accident. What can you tell me about a typical accident?
Degree of bother	We’ve talked about your accidents and how you handle them. I talked to someone recently who thought that their accidents were no big deal, but other kids have told me that they are a really big deal for them. I’m just wondering how big of a deal you think these accidents are?
Practical impact on life	I’ve talked to some kids with [Insert: accidents/bedwetting/incontinence] that have had a lot of trouble with their accidents interfering with their schoolwork and ability to have fun, but other kids who are just like them who have no problem with these things. How is this for you? I’m just curious to know if there are any things that you want to do but can’t because of your accidents?
Emotional impact on life	Some kids I’ve talked to don’t seem to have any problems with their confidence and feel good about pretty much whatever they do, but other kids have told me that their accidents take a little bit away from their confidence. What would you say this is like for you? Based on what you’ve told me already, I’m wondering how much you worry about your accidents? Do you think about your accidents all of the time, sometimes, or not really ever?

Data analysis

A conventional content analysis approach was undertaken¹⁶. In conventional content analysis, researchers immerse themselves in the textual data and then allow codes, categories and themes to emerge. This is in contrast to direct content analysis, in which a theory already exists and the text is used to find support for the existing model. Conventional content analysis begins with an iterative reading of the text and highlighting concepts that emerge, which are known as codes. This is an inductive, rather than deductive approach¹⁷. The coders used these codes to create a code book of pertinent topics related to how the UI influenced the child’s life. Three researchers, including one content expert in pediatric urology (AJS), met initially to refine and discuss the codes and then independently coded the transcripts with an intercoder reliability >0.85. General codes were generated from the interviews and broadly characterized into categories and themes. This process was done iteratively using ATLAS.ti, a qualitative data analysis software (Scientific Software Development GmBH, Berlin, Germany). Segments of text could be coded into more than one category. Frequencies of codes are listed as numbers of participants endorsing those concerns. Letters are used as participant ID to ascribe a quotation to a specific participant.

Results

Overall, 30 children participated in the study (Table 2). Participants had undergone a median of two clinic visits prior to the interview. Participants were approximately equally distributed in gender (16 male, 14 female). Median age for male participants was 11.6 years [IQR 10.2, 13.0] and for female was 10.6 years [IQR 9.9, 11.8]. Twenty participants were in middle childhood (ages 8 -12) and ten were in adolescence (over age 12). There were no notable differences in baseline characteristics between male and female participants.

Table 2:

Subject Characteristics

Characteristic	N = 30
Functional UI Type
Daytime UI only	6
Monosymptomatic nocturnal enuresis	6
Nonmonosymptomatic nocturnal enuresis	3
Daytime incontinence and nocturnal enuresis	14
Stress UI	1
Age (years)
Median, total cohort	11.5 [8.6,17]
No. prior visits for UI
Median [range]	2 [1,8]
Gender
Male	16
Female	14
UI Treatment type
Constipation management	28
Alarm therapy	7
Biofeedback	8
Anticholinergic medication	9
Other (diuretic or psychotherapy)	4

Effect of UI on Participants’ Routines and Activities

There is a substantial practical impact on participants’ lives, as shown in Table 3. Participants relayed significant impacts in their social lives, particularly in sport and sleepovers, and these effects often lead to avoidant behavior of these activities. By contrast, though UI resulted in some decreased focus, needing to use the bathroom more often during school and missing class, the majority of participants did not note a significant effect on their school performance.

Table 3.

Practical effects

Practical effect	Supporting Quote (Participant ID)
Affected sleepovers	I don’t do sleepovers anymore because I don’t want to risk it (F)
Affected schoolwork	I was peeing myself, and 1 was missing like that part of the class, so they were probably talking about important things, and 1 was missing it (EE)
Affected sports	It’s been getting in the way of pretty much all sports in general. I wanted to play football, but I’m always wondering, what if I have to travel out of state and then what am I going to do then. That hampers any thoughts about sports (H)

Affected sleepovers (n=16)

Many participants felt their ability to go to, or enjoy, sleepovers was affected by their UI. They noted having to prepare more than other children to prevent or clean up after accidents. This was seen not only in children with nocturnal enuresis but also daytime symptoms.

Affected schoolwork (n=8)

The majority of participants did not feel their UI affected their schoolwork and related activities. Those that did, however, most often noted issues related to having missing class because of their accidents or needing to go to the bathroom more often. A few noted a lack of focus due to their accidents.

Affected sports (n=6)

While the majority of participants did not feel their UI interfered with their ability to participate in sports, those that did, noted significant impact and tended to avoid sports.

Adaptations toward UI

Participants described a wide variety of adaptations, including behavioral and cognitive, to manage their UI and its effects on their lives. These included preventative and mitigating adaptions. Preventative strategies were aimed at avoiding UI episodes, particularly in social situations. Both participants in middle childhood and adolescence were able to offer strategies for adaptations. There was no difference in strategies offered between male and female participants.

Preventative (n=20)

The vast majority of participants offered preventative behavioral strategies for avoiding accidents or avoiding accidents in a potentially embarrassing situation. These included strategies learned from parents and providers, such as regulating fluid intake, timed voiding and/or double voiding, as well as strategies devised on their own, such as always playing near a bathroom or playing games less likely to trigger an accident. In light of the practical implications on their lives, many participants prevented accidents in a socially compromising situation by not participating in that activity, be it sports, or a sleepover. Another set of preventative adaptations included the use of containment products, such as incontinence safe clothes and sheets.

Mitigating (n=15)

If an accident did occur, nearly all participants were able to identify clear strategies to deal with the event. Many recommended having an extra change of clothes or sheets available as well as accounting for the need to change, by waking up earlier. Participants also devised multiple ways of hiding evidence of accidents, such as by wearing dark clothing, tying a jacket around the waist, or spraying perfume.

Emotional and Mental Health Impact of UI

Participants described strong emotional reactions to their UI. While the majority of the emotions identified were negative, there were some poignant positive emotions.

Self-Esteem (n=26)

The majority of participants did not state that their UI lowered their confidence or decreased ability to perform well at sports or in school (n=21). Only five participants stated that their self-esteem was low, and four did not comment.

Negative emotions

Participants expressed a variety of negative emotions. While many of these were related to UI itself, a significant proportion were related to others’ reactions to the individual’s UI.

Embarrassment (n=26)

Embarrassment was a very prevalent emotion. Embarrassment was primarily related to other people knowing about, seeing, or smelling an accident (n=23) but was also related to having UI in general (n=3).

Anxiety (n=20)

As with embarrassment, anxiety was principally related to having UI episodes in a public place, but was also extended to have UI in an inconvenient situation (n=13). There was a minority of participants who worried or were anxious about the impact of UI on their future (n=5), such as how it would affect college roommates or intimate relationships. Two participants expressed worry or anxiety without a specific focus.

Annoyance (n=17)

Annoyance or frustration were commonly expressed negative emotional reactions. Some participants were annoyed that yet another incontinent episode had occurred (n=7) while others were upset by the interference in social or school activities (n=4). A few expressed annoyance at having to change their clothes after an UI episode (n=4), one felt a general annoyance not ascribed to a particular result and one was annoyed about skin breakdown caused by wetness.

Sadness (n=14)

Sadness varied widely from sadness at an inability to wear regular underwear (n=1) to sadness in regards to being bullied (n=4) to self-described depression (n=6). A few participants reported mild sadness without a specific focus (n=2).

Shame (n=4)

A minority of participants (n=4) expressed shame regarding their UI. Shame was related to having accidents, but more specifically to having persistent “childish” behavior or having a secret.

Positive emotions

Hope (n=7)

While a minority of participants expressed hope that their UI would improve those that did so seemed to feel this emotion very keenly.

Happiness (n=7)

As with hope, happiness was expressed by a minority of participants. Happiness was often related to having a strong support system in place to manage UI and its effects (n=3). One participants expressed happiness at the extra attention received due to UI. Three participants noted a general happiness despite their UI.

Discussion

Children with urinary UI suffer many practical limitations on their day-to-day lives and yet the majority display remarkable resiliency in response to these challenges. This study is the first qualitative exploration of the emotional responses and coping behaviors of children and adolescents with UI. Understanding their coping behaviors – both positive and negative – can allow treating clinicians to develop a framework for helping children who lack their own robust coping strategies or for those who continue to have UI despite medical intervention. Strategies to consider are both behavioral (that is, action based tasks) and cognitive (that is, mental strategies like acceptance or focusing on good aspects of their situation). Notably, in our study, children are less readily able to identify cognitive coping strategies and instead focus on tangible, behavioral responses. Furthermore, despite a number of positive behavioral coping strategies, many children display strong negative emotions towards their UI. Understanding and exploring these emotions may allow us to assist children in engaging in cognitive coping strategies as an addition to their behavioral coping strategies. In other words, there appears to be room for providers to identify the incontinent child’s emotions and suggest positive cognitive coping strategies, which could alleviate some of their negative emotions.

While coping and adaptation may be viewed as markedly different, with coping being the acute and specific behaviors enlisted to deal with an immediate stressor, and adaptation the overall functioning on a social level, here we use these terms on a continuum, without a necessary distinction between the two¹⁸. Coping strategies, particularly behavioral adaptations, are determined by personal factors, condition factors, and environmental factors – both the physical and social environment. As the condition itself cannot be changed, participants must either change their behavior, or change their environment. Most of our participants did both and were often able to correctly identify aspects over which they did, and did not, have control. Behavioral changes include regulating fluid intake and voiding hygiene, such as timed or double voiding. Physical environment regulating strategies include avoiding certain activities and locations. Another strategy to deal with a chronic condition is known as pacing, which refers to balancing the time one needs to deal with the condition, like preventing or mitigating an accident, with the time needed for other daily activities¹⁸. Often this involved giving more, or less, time to another activity. One participant (Subject V) recommended “find[ing] times in your schedule to go the bathroom that people won’t notice you’re gone for an extended amount of time.”

Tangible, behavioral coping strategies should be presented to children with UI and providers should then work with the children to understand their daily goals and priorities. With this information, the provider can empower children to select their own strategies and routines to best cope with their UI. Though this active participation and self-determination will require a greater initial time investment on the part of the participants, parents and provider, it has been shown to have a more lasting impact than UI treatments in which children are mere passive recipients¹⁹. Studies show that encouraging participants to identify and elucidate their goals, and then select their treatment modalities and coping strategies leads to better reported symptom relief in respiratory diseases ²⁰. Similarly, identifying the most powerful emotions related to UI will allow guidance as to the most poignant concerns. Empowering children with UI to identify when and where continence is most important to them and then working together to enlist strategies to preserve their social continence in those situations should lead to improved participants outcomes.

Work from adult women with UI identifies two main adaptation priorities (1) maintaining control and (2) continuing on with life²². Like the children in our study, women who prioritize maintaining urinary continence take charge of their social situation. To do this, children may cease activities, such as sports, or avoid potentially embarrassing situations, such as sleepovers. They are apt to covering up their issues and will undertake extreme strategies to do so e.g. always wearing dark clothes to more easily hide evidence of an accident¹⁸. Women who prioritize continuing on with life are more likely to adopt cognitive strategies to dealing with their UI These including minimizing, optimizing (saying it could be worse), redefining normal, reordering priorities, engaging in favorable comparison and engaging in denial¹⁸. Children with UI in our study rarely verbalized these cognitive strategies for coping, though minimizing and redefining strategies were present. Further work is needed to understand if cognitive strategies would prove successful in coping with UI in children.

Another important insight provided by the participants was the prevalence of embarrassment they expressed. This highlights the importance of treating UI in order to minimize the impact of embarrassment, bullying, and worry. An interesting insight is that despite dealing with prevalent anxiety and worry about accidents, participants described relatively good self-esteem and the minority expressed statements consistent with depression. This is interesting as it suggests that their feelings are situational and directly related to UI and do not affect their overall mental health.

Strengths and Limitations

This study is the first to provide an in-depth, qualitative analysis of the implications on the lives of children with UI, and their coping behaviors. As with all qualitative analysis, preconceived notions of the coders regarding the experiences of children with UI may have affected the coding and analysis. To mitigate this, coding was undertaken by one pediatric urologist, but two non-medical professionals. A purposive sample was employed to balance the genders but all participants were enrolled from a pediatric urology clinic. It is possible that children with UI presenting to pediatric urology are inherently different, presumably more severe, than those seen in the general population. We also did not utilize validated questionnaires for anxiety and mental health, which could have provided further insights into how UI affected their emotions. However, the participants’ self-reporting of their emotions and symptoms provides powerful insights into how they view their UI as affecting them. Finally, there were no identifiable differences in experiences or emotions between genders and age groups. We suggest a larger sample would be needed to explore this in more detail.

Conclusion

Children with UI experience many effects on their daily lives because of their accidents, or fear of accidents. They primarily use behavioral coping strategies to deal with their UI and are able to engage in both preventative and mitigating behavioral adaptations. Behavioral coping strategies should be presented to children with UI to empower them to manage their symptoms. A minority of children employ cognitive coping. The most commonly experienced negative emotion was embarrassment; by combining behavioral and cognitive coping strategies physicians, psychologists and parents can help these children overcome their embarrassment and continue to lead full lives.

Table 4.

Adaptations

Adaptation Strategy	Supporting Quote (Participant ID)
Preventative	You should probably go to the bathroom very often…if you know you’re going to be drinking a lot, you should remember that you have to use the bathroom (G)
Mitigating	[After a UI episode] I take the top sheet off and I have another sheet on the bottom (C)

Table 5.

Emotions related to UI

Emotion	Supporting Quote (Participant ID)
Negative
Embarrassment	I feel embarrassed. I feel disappointed in myself I feel like I’ve failed (L)
Anxiety	They do make me anxious …what if someone finds out somehow and then how is everybody going to look at me different afterwards, because news travels fast (H)
Annoyance	At night, it’s kind of annoying, but it happens like five out of seven days of the week. It wakes me up (B)
Sadness	Sometimes it’ll make me depressed, because it’s like this happens so many times, and it will not go away, and it kind of brings me bad memories again (I)
Shame	I feel ashamed because I’m leaking all the time at home, at school, and at the movie theater (W)
Positive
Hope	You’re just waiting for when that routine is finally going to break…It’ll be one of the happiest days of your life. I guess knowing that that day would come soon enough, it’s something to look forward to (H)
Happiness	I’m fine. I’m still happy (R)

Appendix. Quality of Life Instrument for Children with Urinary Incontinence Sample Script and Questioning Route

Note:

Bolded questions and comments will be asked of or discussed with every participant.

Probes are examples and will be discussed when the child’s response requires a deeper understanding.

Interviewer directions are in [brackets].

(Specific about each participant’s incontinence will be known ahead of time from clinic notes. This includes their symptoms, duration, presence of anatomic defects, setting(s) of incontinence episodes, and any treatment(s) rendered)

Introduction:

“My name is __________ and I’m working with [insert provider’s name here] to learn more about what’s important for kids who sometimes have accidents with their pee*. When you have an accident, what do you call it?”

[Interviewer: use the child’s response henceforth when referring to incontinence/enuresis/accidents/bedwetting.]

“This is very important because myself and [insert provider’s name here] need your help to understand what it’s like to have accidents. We are just going to talk – nothing else. I want you to tell me anything that you can think of. Some of the things you tell me might make you feel strange or embarrassed or scared, but it’s okay to feel this way. You are the expert, and I need you to teach me about what you’ve experienced.”

(For participants 8-12 years old (or older if they choose to have parents in room)):

“Your mom (or dad) is here so that it’s comfortable for you. It is so important that YOU tell me what you are thinking, so I have asked your mom (or dad) to let you do the talking. We are going to record what we talk about, but whatever you say will not be shared with anyone you know.”

“Do you have any questions?” (Answer questions appropriately)

“Okay, so let’s get started.”

Icebreakers:

“Can you tell me a little bit about yourself?”

NOTE: these are icebreakers – so ask the participant about school, recent events (Spring Break, Christmas, vacations…), what they enjoy most outside of school, or anything to get them talking

Open Ended Exploration:

For pre-teens:

“Now I’d like to talk about accidents. Pretend I’m an alien, and have never been to earth before, and don’t know anything about accidents. Pretend that you are the expert and know everything about accidents. Can you describe what it’s like to have accidents/bedwetting?”

For teenagers:

“Now I’d like to talk about accidents. You are an expert and know everything about accidents. Now pretend that I have never had any accidents, so it’s really hard for me to imagine what your experience has been like. Can you describe what it’s like to have accidents?”

Pointers:

• Encourage child to talk about anything they want to.

• Take notes and follow natural leads in the discussion. Circle back to particular areas that were mentioned earlier but not yet elaborated on by child.

• Between natural gaps in the discussion, re-cap for child what they just said (e.g. “You just told me that you feel great, get discouraged about having to wake up at night, and but don’t really mind wet undies. Do I understand that correctly?”)

• Keep the interview conversational yet ensure all domains are covered.

Unbiased prompts:

“Tell me more about that.”

“Help me understand [insert what child just said] better.”

“How do you feel about that?”

Further prompts (for quiet subject):

“When I come to earth for the first time, I’m going to have accidents. Tell me what I need to know.”

“What advice would you give me?”

“What would you tell me about what I might feel after I have an accident?”

“So if I’m having accidents like you do, how big of a deal will they be for me? [no big deal, just part of life, ruins you day, ruins your week]”

“Can you describe what a typical accident is going to be like for me, based on your experience? [e.g. what happens, when, where, how does it happen]

“Thank you for sharing your experiences – now an alien visiting earth will know what accidents are like.”

[Interviewer: keeps note of domains that have been brought up by the child. All of the following specific domains need to be addressed, if not already addressed in above.]

“If it’s okay with you, I’d like to talk about some specifics that you haven’t brought up. Is that okay?”

Relationships:

“Some kids have told me that their accidents affect their relationships. I’m wondering if your accidents might affect your relationships with your mom or dad? How would you describe your relationship with your mom?”

[Interviewer: Prompt the child to delve further into area by asking, “Tell me more about that,” or “How do you feel about that?,” or “What’s good/bad about it?”

“These might be some words that people use to describe their relationship” (SHOW RELATIONSHIP 1 RESPONSE CARD).]

Prompts:

“Well, some kids tell me that their relationships with their mom is better because of certain things about their incontinence, but other kids say that the accidents make their relationship with mom harder. Tell me how it is for you?”

Further prompts:

“I’m wondering if your accidents might bring you together or cause trouble between you and your mom?”

“How do your accidents give you special time with your mom, if at all?

“How does your mom protect you from others, if at all?”

“How does your mom help or support you, if at all?”

“I’m wondering what you think your mom thinks about your accidents. How do you think they make her feel?”

[Interviewer: follow-up a short response with “Tell me more about that.” Or “What do you mean by that?”]

[Interviewer: For child having difficulty describing this, “These are some words that some kids use to describe this” (SHOW RELATIONSHIPS 2 RESPONSE CARD).]

“Actually some kids that I’ve talked to say that their relationship with their dad is different than with their mom? How is this for you?”

[Interviewer: Prompt the child to delve further into area by asking, “Tell me more about that,” or “How do you feel about that?,” or “What’s good/bad about it?”]

Prompts:

“Well, some kids tell me that their relationships with their dad is better because of certain things about their incontinence/accidents, but other kids say that the accidents make their relationship with dad harder. Tell me how it is for you?”

Further prompts:

“I’m wondering if your accidents might bring you together or cause trouble between you and your dad?”

“How do your accidents give you special time with your dad, if at all?

“How does your dad protect you from others, if at all?

“I’m wondering what you think your dad thinks about your accidents. How do you think they make him feel?”

[Interviewer: follow-up a short response with “Tell me more about that.” Or “What do you mean by that?”]

[Interviewer: For child having difficulty describing this, “These are some words that some kids use to describe this” (SHOW RELATIONSHIPS 2 RESPONSE CARD).]

“Do you have any brothers or sisters?”

If yes:

“What can you tell me about them?”

“How would you describe your relationship with them?”

[Interviewer: Prompt the child to delve further into area by asking, “Tell me more about that,” or “How do you feel about that?”]

Prompts:

“How do your brothers or sisters help you or support you and your accidents, if at all?”

“How do they protect you from others who might make fun of you, if at all?”

Incontinence – Typical Scenario and Specific Symptoms:

“You told me a little bit about your life with accidents. I just want to be sure that I really understand it. [Interviewer: recap what the child said during initial exploration].”

[Interviewer: If any of the following have NOT been mentioned by child, ask these specific questions]

Typical Scenario:

“I want to get an idea of what happens with a typical accident. What can you tell me about a typical accident?”

Prompts:

“What usually happens?”

“Where does this usually happen?”

“When does it happen?”

“Is there a person like your mom or dad who usually helps you out?”

“How do you let your mom or dad know you’ve had an accident?”

“What do you do to stop your accidents from happening?”

[Interviewer: Prompt the child to delve further into this question by asking “Tell me more about that,” or “How do you feel about that?” ]

Further Prompts: (if unable to answer ‘typical’ question:

“Tell me about your last accident.”

Symptoms:

We talked about [fill in things described above in ‘typical’ accident]. Besides those things, is there anything else that bothers you when you have accidents or when you have to pee?

[Interviewer: Await child’s response and see what he/she says. Then ask all of the following to ascertain specifics about their symptoms.]

“I just want to make sure that I’ve got it all, so I’m sorry but I need to ask some of these specific questions about your pee”

[Pain:] “Some kids say that it hurts when they pee. How is this for you?”

[Interviewer: For child having difficulty describing this, “These are some faces that describe different levels of pain – from none to a lot. Which face fits what you feel when you pee? SHOW FACES RESPONSE CARD).]

[Urinary frequency:] “Other kids have told me that they have to pee all the time during the day, but other kids don’t really go at all! What is it like for you?”

[Interviewer: For child having difficulty describing this, “These are some words that describe how often someone might need to pee. Which word fits you best? SHOW FREQUENCY CARD).]

[Strain:] “Some kids need to push really hard to pee. How easy or hard is it for you to start peeing?”

[Interviewer: For child having difficulty describing this, “These are some words that describe how easy or hard it might be to start peeing. Which word fits you best? SHOW STRAINING CARD).]

[Urgency:] “Other kids need to rush to the potty/bathroom (Interviewer: pick an age appropriate term) because they can’t hold in their pee? How is it for you?”

[Interviewer: For child having difficulty describing this, “These are some words that describe having to rush. Which word fits you best? SHOW URGENCY CARD).]

[Weakness or fatigue:] “This might seem like a strange question, but can you tell me if your accidents ever make you feel weak or tired or really pooped?”

[Interviewer: follow up any “yes” responses above with, “Tell me more about that,” or “How do you feel about that?”]

[If more than one symptom is elicited, proceed with: Of those things you just mentioned, which are the worst for you?]

Gravity of experience:

“We’ve talked about your accidents and how you handle them. I talked to someone recently who thought that their accidents were no big deal, but other kids have told me that they are a really big deal for them. I’m just wondering how big of a deal you think these accidents are?”

Prompts:

“Do you think it’s just part of life?”

“Is it the worst thing that ever happened to you?”

“Is it something that ruins your day?”

“Is it something that ruins your week?”

Etiology:

“As I’ve been talking to kids like you who have accidents, I’ve heard a lot of different reasons why they think they have accidents. Why do you think you have accidents?”

Prompts:

“Some kids think that when they have an accident it’s their fault or they caused it, but other kids think that an alien caused it, and others blame their teacher. What do you think about this?”

Interference:

“I’ve talked to some kids with [Insert: accidents/bedwetting/incontinence] that have had a lot of trouble with their accidents interfering with their schoolwork and ability to have fun, but other kids who are just like them who have no problem with these things. How is this for you?”

“What things do you change or avoid doing with your friends because of your accidents?”

“I’m just curious to know if there are any things that you want to do but can’t because of your accidents?” [e.g. sleep overs, summer camp, swimming, certain sports, school activities?]

“What else that you do at school or home changed?” [e.g. bathroom breaks, clothes changing, sleep schedule, fluid intake]

“Some kids have told me they are actually better at doing some things because of their experience with accidents, but other kids have told me that they are the same or struggle with many things. How is this with you?”

Independence:

“When you were describing your typical accident and what it’s been like for you, I was wondering if you have become more able to do things all by yourself or if you find yourself relying on other people more to do the usual everyday things. What has this been like for you?”

“How have your accidents changed how much or how little you need your parents?”

[Interviewer: For any of the above, get the child to delve further into any of above areas by asking, “Tell me more about that,” or “What do you mean when you say that?”]

Ok, thank you for your responses. Now I’m going to ask you some questions about your accidents and family and friends.

Family activities:

“Some kids I’ve talked to say that their accidents don’t really affect the things they do together with their mom and dad and brothers and sisters, but others have told me that this affects those things. How is this for you?”

[Interviewer: follow up the child’s response with, “Tell me more about that…” ]

Prompts:

“I’m wondering if you are maybe not able to do certain things as a family because of accidents?”

“What about something like going away for a short trip. Some kids say that nothing is different, but other’s tell me that their family stuff is changed around. How is this for you?”

Peer Relationships:

“Can you name two of your best friends?”

“Which of your friends, if any, have you told about your accidents, and why did you tell them?”

[Interviewer: follow up a child’s response with, “Tell me more about that.” “Have you told him/her, or did they just find out?” “How did they find out” (from smelling?, from seeing?)

“What do you think [insert friend’s name here] thinks about your accidents?”

Prompts:

“I was talking to a child like you last week, and they told me how much their friends care about their accidents, and how they protect them by not letting others know about their accidents. How is this for you?”

“One child I was talking to said that they were a better friend and understood how someone who was sick in their classroom felt because they have had accidents for a long time. How have your accidents changed how you are with your friends or people in your family?”

Prompts:

“Are you nicer to other people?”

“Do you help others more?”

“Are you more forgiving?”

“Can you relate to others who are sick?”

OK, thank you for telling me about your friends and family. Now I’d like you to help me learn about how you feel about what you are able to do.

Self-Esteem:

“Some kids I’ve talked to don’t seem to have any problems with their confidence and feel good about pretty much whatever they do, but other kids have told me that their accidents take a little bit away from their confidence. What would you say this is like for you?”

Prompts:

“How would you describe how you compare your confidence to other kids at school?”

“How do you feel about your ability to play sports or activities that you like doing?”

“How have your accidents affected this, if at all?”

“How do you feel about your schoolwork?” [Prompt with: very good, okay, not good]

“How have your accidents affected this, if at all?”

“What about friends – would you say that you have the number of friends you like? The kinds of friends you like?”

[Interviewer: For any of the above, get the child to delve further into any of above areas by asking, “Tell me more about that,” or “How do you feel about that?”]

Anxiety:

“Based on what you’ve told me already, I’m wondering how much you worry about your accidents? Do you think about your accidents all of the time, sometimes, or not really ever? “

“What about going out of the house or in public? How much do you worry about where you go?” [Prompt: a lot, sometimes, I never think about it]

“How afraid are you that you might have an accident?” [Prompt: very afraid, somewhat afraid, never afraid]

[Interviewer: For any of the above, get the child to delve further into any of above areas by asking, “Tell me more about these feelings,” or “How do you feel about that?”]

Depression:

“Some doctors think that kids with accidents feel sad or depressed. I’ve talked to a lot of kids who don’t seem to feel sad or depressed. How is it going with your mood?”

Prompts:

“I’m wondering if your accidents make you feel upset or like you want to cry? What do you think?”

“What about having fun? Are you still able to enjoy doing the things with your friends, or is it hard for you to have fun with others?”

[Interviewer: For any of the above, get the child to delve further into any of above areas by asking, “Tell me more about these feelings,” or “How do you feel about that?”]

“So I just want to make sure that I really understand what you are telling me. Here is a piece of paper with some ways you might feel or things you might feel like doing. Can you please circle any that describe how you feel? If I didn’t include the right ones – you can draw in any that you like.”

[Interviewer: Present 5 emotions sheet]

Thank you so much! Now I’d like you to help me learn about something different…

Activities:

“When you think about the things you do on the playground or in gym class (Interviewer: choose age appropriate condition), I’m wondering if you are able to do the same things on the playground as other kids your age. What do you think?”

[Interviewer: follow up the child’s response with, “Tell me more about that.” If child says they are not able to do certain things, ask them “How are you not able to do those things that other kids do?” ]

“What can you tell me about what sports you play, and why you decided to play them?”

“How have your accidents changed what you decided to play?”

“What about other things besides sports?”

Future:

“Some kids I’ve talked to have worried about how their accidents will affect them in the future, like when they go to high school or college (Interviewer: pick appropriate term). Other kids seem not to worry. What has this been like for you?”

Conclusions:

“Thank you so much for sharing your experience and thoughts!”

“We are almost done, but before we finish I just want to make sure I’m not missing anything.”

“Is there anything about your life that we haven’t talked about or that you want to tell me?”

“Out of all those things we talked about, what are the most important things you want me to know?”

“Can you think of any other questions I should be asking?”

“Do you have any questions for me?”

“Okay, that’s then end of the interview. Thank you for your time!”