THE DEVELOPMENT OF AN EDUCATIONAL WEBSITE FOR THE PARENTS OF CHILDREN EXPERIENCING CHRONIC CONSTIPATION By Ashley M. Daughenbaugh, R.N., B.S.N. Submitted in Partial Fulfillment of the Requirements For the Master in Science in Nursing Degree Edinboro University of Pennsylvania Approved by: Conway, PhD, CRNP Committe^Chairperson C ielsel, PhD, RN ittee Member Date i Abstract The Development of an Educational Website for the Parents of Children Experiencing Chronic Constipation The purpose of this project was to develop an educational web-site for the parents of children with chronic constipation. As the climate of health care continues to change, patient education becomes a greater responsibility for health care providers, assessing and meeting informational needs of patients and their families are integral parts of health care practice (Canobbio, 1996). The nurse practitioner, at the forefront of healthcare, can use this tool to help patient and their families to combat the feeling of powerlessness that so frequently accompanies a health crisis (Davidhizer, 1992). Chronic constipation in children is a frequent complaint in the primary care setting (Kirchner, 1999). Both a physical and emotional problem, it exacts a huge toll on the psychological well being of the family by eroding the self esteem of the child, and also the parents and their belief that they can effectively parent (Di Lorenzo, 2000). There is a deficit of educational material on this topic, particularly on the Internet. The Internet is the place to which more and more parents turn for medical information and emotional support (Chi-Lum,1999). ii Acknowledgements I would like to take this opportunity to sincerely thank all the people whose help and support made completing this project possible. This is the culmination of four years of hard work and sacrifice, not just by me, but by my family as well. Loving thanks to my husband Todd, whose unwavering confidence in me kept me trudging through the four long years of this Masters process. Thank you to my children Logan and Aidan who have no memory of Mama not being a student. Thank you to them for taking naps, entertaining themselves, and not burning the house down while I studied or worked on the computer. Thank you to my wonderful extended family and friends for providing dinners, babysitting, and moral support. Special thanks to my Chairperson, Dr. Alice Conway Ph.D., CRNP, for believing so enthusiastically in my project, that I couldn’t help but believe in it too. Thank you to my committee member Dr. Janet Geisel Ph.D., R.N., for keeping me on the right track. Thank you so much to Dr. Michael Webster M.D. and Lisa Scibetta CRNP for taking the time to review my web site, and give me their very valuable suggestions and feedback. iii Table of Contents Content Page Abstract i Acknowledgements ii Chapter 1: Introduction 1 Background of the Problem 1 Statement of the Problem 2 Theoretical Framework 2 Statement Purpose 4 Assumptions 5 Definition of Terms 5 Summary 5 Chapter 2: Review of the Literature 7 Constipation 7 Ramifications of Chronic Constipation 8 Physical 8 Emotional 10 Strategies For Prevention/Resolution 10 Understanding the problem 11 Strategies to try at home 11 When to seek help 13 Using The Internet For Medical Information Growth of Internet users 14 14 iv Patient empowerment 14 Developing Effective Educational Materials 14 Summary 15 Chapter 3: Methodology 16 Model For Evaluating Printed Educational Materials 16 Predesign phase 16 Design phase 16 Pilot test phase 17 Implementation/distribution phase 18 Evaluation phase 18 Operational Definition. 19 Summary 19 Chapter 4: Web Site 20 Home Page 20 What is constipation? 21 Misconceptions 22 Acknowledgements 23 Under 6 months 24 Common causes 25 Prevention and treatment 27 High fiber foods 29 Calculate fluid needs 30 Helpful hints 31 V References Physiology. 33 Treatments 34 Danger signs 35 What to expect 36 Tests 38 Frequently asked questions 39 Links 41 42 1 Chapter 1 Introduction This chapter provides a brief discussion about constipation in children and patient /parent education. The Self-care Deficit Theory of Nursing developed by Dorothea Orem (1995) serves as the theoretical framework for this scholarly project. Background of the problem, the problem statement, purpose, assumptions, and pertinent definitions are provided. Background of the Problem As the climate of health care continues to change, patient education becomes a greater responsibility for health care providers, assessing and meeting informational needs of patients and their families are integral parts of health care practice (Canobbio, 1996). The nurse practitioner, at the forefront of healthcare, can use this tool to help patient and their families to combat the feeling of powerlessness that so frequently accompanies a health crisis (Davidhizer, 1992). Approximately 28% of the population of the United States is constipated (Di Lorenzo, 2000). Epidemiologic studies were not found for the pediatric population in the United States, however, the United Kingdom reports chronic constipation in 34% of their toddlers. According to parental surveys of Brazilian parents, 37% of their children under the age of 12 were thought to have constipation. (Di Lorenzo,2000). In the United States, chronic constipation is common in children and is the primary diagnosis in 25% of children referred to pediatric gastroenterologists by their primary care provider (Kirchner, 1999). The term constipation refers to difficulty with the passage of stool. Individuals with constipation have stools that are dry hard 2 and difficult to pass (Berkowitz, 1996). Normal frequency and patterns of stooling vary greatly, and are heavily influenced by environmental and emotional factors as well as physiologic ones. Diet, medication and degree of hydration are factors, as are environmental changes in a child’s life such as travel, a new home or school, birth of a sibling, or family stress (Berkowitz, 1996). Few benign medical conditions are as distressing as a disorder of defecation. Parents attach great importance to their children’s successful stooling” (Di Lorenzo, 2000, p.4). Di Lorenzo describes the tremendous amount of frustration and parent child hostility that is generated in dealing with chronic constipation. This frustration expresses itself in decreased self-esteem, depression, loss of coping skills, and anxiety. Statement of the Problem Chronic constipation in children is a frequent complaint in the primary care setting (Kirchner, 1999). Both a physical and emotional problem, it exacts a huge toll on the psychological well being of the family by eroding the self esteem of not only the child, but of the parents and their belief that they can effectively parent (Di Lorenzo, 2000). There is a deficit of educational material about this topic, particularly on the Internet, which more and more is the place parents turn to for medical information and emotional support (Chi-Lum, 1999/ Theoretical Framework The Self-care Deficit Theory of Nursing developed by Dorothea Orem (1995) provides the theoretical framework for this scholarly project. Self-care was described by Orem as the actions persons performed in the interest of maintaining life, health, 3 and well being. Orem terms the power of the individual to engage in self-care and capability for self-care as “ self-care agency”. In the care of children, or others incapable performing self-care, Orem describes the role of the dependent-care agent, i.e. the parent or caretaker. She states that dependent care agency, is the ability of responsible adults to meet the continuing demands for self-care of their dependents. Using this theoretical framework, the dependent care agents might seek to access an educational web site if they determine that they have what Orem terms a “dependent care deficit". A dependent-care deficit is an unequal relationship between capabilities (agency) of responsible adults and dependent person’s required self-care demand (Hartweg, 1991). Hartweg (1991) described eight universal self-care requisites identified by Orem, number four being, “the provision of care associated with elimination processes and excrement” (p. 21). In trying to meet the provision of care associated with elimination processes and excrement, a parent or caregiver may realize that their child is having difficulty with bowel elimination despite their doing everything they know to do to solve the problem. At this time the parent, as the dependent -care agent, may go to their nurse practitioner for help. The parent may need to know more about the physiologic mechanism of constipation, or which home remedies are safe to try, and which are not. The parent might need to know at what point to seek medical help from their primary care provider, or they may want to know more about any tests or treatments their primary care provider has ordered. The acknowledgement by the parents that they have an educational dependent-care 4 deficit legitimizes the role and intervention of the nurse practitioner in what Orem terms a supportive-educative nursing system (Hartweg, 1991). Hartweg (1991) identifies Orem’s five general methods that persons use to assist or help others: acting for or doing for another; guiding another; supporting another, physically or psychologically; providing for a developmental environment; and teaching another.” (p.29) In addition to these, another general method of assisting is in the form of guidance, in which the patient is guided in making decisions about further medical interventions. These are actions performed by the nurse practitioner in the supportive-educative role. If the nurse practitioner deems it possible for the patient to perform self-care actions, the supportive educative system is implemented (Hartweg, 1991). The parent, as the dependent-care agent, acting on behalf of their child is experiencing a health deviation, i.e. constipation. The parent experiences a dependent-care deficit, or an inability to solve the problem on their own. The goal of the nurse practitioner is to provide the support, guidance and education that will ensure that the parent will be able to meet the health care needs of that child. Statement of Purpose The purpose of this project is to develop an educational website that will assist parents of children with constipation to understand the physiological process and to make informed and safe choices for their children. 5 Assumptions For the purpose of this project, the following assumptions have been made: 1. Constipation is a common problem. 2. Parents are motivated to learn on behalf of their child. 3 Parents will access a website as a means of educating themselves. 4. A nurse practitioner’s education and experience prepares them to identify an educational deficit and correct it. Definition of Terms The following terms have been defined for this study: 1. Constipation is the difficult passage of dry hard stool associated with a decreased frequency in stooling (Berkowitz, 1996). 2. Encopresis is also known as stool soiling, as the result of constipation, the child experiences a leakage of liquid stool around the mass of stool stuck in the lower bowel into the underwear (Di Lorenzo, 2000). Summary Constipation in children is a common (Kirchner, 1999) and multidimensional problem that affects the whole family (Di Lorenzo, 2000). The parent seeks out a solution to this frustrating and physically uncomfortable problem on behalf of their child. It is recognized, that in healthy children, bowel problems are typically transient but, untreated, can spiral into physical, behavioral, and developmental problems that could potentially last into the school years and become refractory to empirical medical treatment (Issenman, Filmer, & Gorski, 1999). The nurse practitioner has a valuable opportunity in providing education and support to families 6 experiencing this problem so that they may seek out professional intervention at the appropriate time. Dorothea Orem’s (1995) Self-care Deficit Theory of Nursing provides the theoretical framework for this project. Assumptions and definition of terms have been provided. 7 Chapter 2 Review of the Literature The purpose of this project is to develop an educational web site to meet the learning needs of parents whose children are experiencing chronic constipation. This review of literature addresses the prevalence of the problem of constipation in children and the physiologic process of elimination that can lead to constipation. It also addresses the physical and emotional ramifications of chronic constipation, including the effect on the child’s self-esteem and the parent/child relationship. This review of literature also looks at strategies for prevention and resolution of constipation, as well as the use of the Internet as a source of patient education and teaching. Constipation Research indicates that complaints of constipation account for as much as 3% to 5% of pediatric out patient visits and as much as 25% of referrals to gastroenterologists (Di Lorenzo, 2000; Issenman et al., 1999; Kirchner, 1999). Constipation is common among healthy children and is usually first noted by parents as their child approaches toilet training age (DI Lorenzo, 2000). At this time a child s stool becomes more susceptible to hardness, dryness, or to having a longer transit time (Issenman et al., 1999). A newborn has only the basic regulatory mechanisms to control defecation, and it is not until the time of toilet training that the child is capable of any conscious decision to contract or relax skeletal muscles thus controlling the time and place of elimination (Di Lorenzo, 2000). 8 A basic understanding of the physiology associated with defecation is helpful to a parent dealing with this process in their child (Di Lorenzo, 2000). Three to four hours after food has been eaten it enters the cecum. It then takes several more hours to reach the rectum. There are two normal motor patterns responsible for the movement of the colonic contents. The first are segmental, non-propagated tonic and phasic contractions that mix luminal contents. The second are very powerfill high amplitude propagated contractions that propel stool to the rectum. This pattern of motility increases after meals and on awakening. When the rectal wall is distended by stool there is a reflex contraction of the internal anal sphincter pushing fecal material into the anal canal. It is at this point that a conscious decision is made to expel or postpone the stool. If the child chooses to postpone, there is voluntary contraction of the external anal sphincter and the puborectalis muscle. Later, when the child chooses to defecate, a voluntary contraction of the abdominal muscles is needed to push the stool into the anal canal and once again produce a bowel movement. The longer the bowel movement is delayed, the more water is absorbed from the fecal material producing a drier, harder movement to pass. Ramifications of Chronic Constipation Ramifications of chronic constipation are both physical and emotional, putting strain on the family that must deal with it (Di Lorenzo, 2000). The following, discusses those ramifications. physical Anything that interrupts the basic regulatory mechanism associated with defecation can lead to constipation (Di Lorenzo, 2000). Although usually a benign course, there is evidence that in some children, constipation poses a real risk 9 of becoming a chronic gastrointestinal disturbance that can have long-range effects on toilet training (Issenman et al., 1999). The toilet training process itself can for a variety of reasons be the primary cause of stool withholding behavior, hence, constipation (Issenman et al., 1999). Reasons as simple as not getting the proper leverage sitting on an adult size commode (due to feet not touching the ground) or withholding due to excessive parental pressure can contribute to the problem. The child is then set up for what is considered to be the number one cause of chronic constipation in children, a painful or frightening evacuation (Di Lorenzo, 2000; Issenman et al., 1999). Children, as concrete thinkers, react to unpleasant experiences with repeated and often successful attempts to avoid those experiences again (Di Lorenzo, 2000). Being abstract thinkers, it is difficult for a child to understand that if a bowel movement hurts a little now, letting it out, will have long-term benefits. A constipated child would prefer to postpone defecation forever (Di Lorenzo, 2000). This type of constipation is termed “functional” or “behavioral”, and the children who experience it, have normal colonic motility (Di Lorenzo, 2000, Kirchner, 1999). The only abnormal motor activity in most children with chronic constipation is found in the rectum, which may become so dilated due to with holding, it no longer has the muscular force to propel the stool properly (Di Lorenzo). What was initially a conscious decision to withhold becomes autonomic. Symptoms of constipation may include some or all of the following: (a) No bowel movement for several days or daily bowel movements that are hard and dry, (b) cramping abdominal pain, (c) nausea, (d) vomiting, (e) weight loss, (f) liquid or solid, clay-like stool in the child’s 10 underwear-a sign that stool has backed up. When episodes of constipation last for more than three weeks they are considered to be chronic (Berkowitz, 1996). Emotional. Chronic disorders put children and their families at high risk for psychosocial and or management problems. The stresses of any chronic health problem affect all members of the family, it is a perpetual and demanding companion (Futcher, 1998). Parents attach great importance to their child’s successful stooling. It is not uncommon for an anxious parent to call their primary care provider (PCP) in the middle of the night if they feel their child is struggling with defecation. <cMost of us have met parents so focused on their child’s bodily functions that they are able to recall number, timing, and character of each delivery, describing the event with an emphasis similar to the one used to recall the child’s first steps or words” (Di Lorenzo, 2000, p. 4-5). Both Di Lorenzo and Issenman et al. (1999) describe the parent/child hostility during the battle of wills that often takes place at this time. This is especially evident when children develop fecal soiling as a consequence of their constipation. Both note diminished self-esteem, depression, loss of coping skills, and anxiety in both parent and child. If this chronic condition is not delt with effectively, and is allowed to stretch into the school years, a failure to maintain social bowel continence is associated with intense parental disapproval, feelings of embarrassment or shame, and difficulty in social situations (Issenman et al., 1999). Strategies For PreventionZResolution Parents need to understand the problem and be given safe strategies to deal with it effectively (Austin-Kessner, 1990). By learning how to have some control over the 11 events affecting their child’s life, parents can combat the powerlessness that is often associated with a chronic health problem (Davidhizer, 1992). Understanding the problem. In the literature, Austin-Kessner (1990), Davidhizar (1992), and Futcher (1988) all indicate that having some understanding of a problem helps caretakers to deal more effectively with it. Davidhizer (1992) indicates strongly that knowledge of an illness and resources available, positively impacted the feelings of powerlessness among family member caregivers. Futcher (1988) states that illness gives a child an inappropriate power over their parents. It follows that providing parents with information about a child’s problem, and equipping them with strategies to deal with it, would reestablish the appropriate balance of power. Austin-Kessner (1990) describes a stage of “demystification” parents go through when their child faces a health challenge. This occurs when parents actively seek information about their child’s condition. During this stage parents learn the facts and begin to realize that other problems could be worse. She goes on to say that, during this process of learning about the problem and its treatments, parents generally feel less anxious, guilty, and more in control. Strategies to try at home. The literature agrees that the first step in dealing with constipation in children is to manipulate the diet; this first step can be done safely and easily by the parents prior to seeking care from their PCP (Berkowitz, 1996, Di Lorenzo 2000, Issenman et al., 1999). The goal of dietary management is to help the child to establish a varied and nutritionally well balanced diet, with high fiber meals and adequate fluid intake (Nelson, J. K„ Moxness, K. E„ Jensen, M. D., & Gastineau, C. F. 1994). As noted in the MayoClmi^Q^ (Nelson et al., 12 1994), quantitative recommendations for fiber intake in children have not been established, however the American Academy of Pediatrics Committee on Nutrition states, a “substantial amount of fiber should be eaten by all children over the age of one to ensure normal taxation” (American Academy of Pediatrics, 1981, p.573). Recommendations state that children’s diet include enough fiber (vegetable, fruits, and whole-grain breads and cereals) so that bulk left in the in the bowel encourages and stimulates evacuation. Classifications of foods according to increasing bulk are as follows: protein, fat, milk, digestible carbohydrate, and digestible carbohydrate with nondigestible material (Nelson et al., 1994). Fluid intake is essential to bowel function and is especially important with a higher fiber diet, most children do not regularly drink adequate amounts of fluid (Nelson, et al., 1994). The minimum requirement of fluid for children approximates 60 ml/kg of body weight per day. Excessive fluid intake is considered to be 2 1/2 times this amount. A bowel-training program is necessary to establish a regular bowel habit (Di Lorenzo, 2000, Issenman et al. 1999). It is recommended that a child be taught not to wait to have a bowel movement, the child should sit on the toilet for 5-10 minutes at about the same time every day, preferably after a meal. The child should be able to plant his or her feet firmly on the floor for proper leverage; this may require the use of a footstool. Over the counter laxative products are available to treat constipation in children, but the choice of laxatives depends on the age of the child, and how bad the constipation is (Berkowte. 1996, Di Lorenzo, 2000). Laxative use may complicate 13 or worsen the child’s situation in the long run if not used properly or with discretion. They agree that parents seek advice of their child’s PCP before choosing or using an over the counter laxative. When to seek help. The differential diagnosis of constipation is age related and depends on assessment of the factors that have led to the conclusion that constipation is occurring. When the constipation first presents itself at the time of toilet training, if stooling has to that point been normal, it is highly suggestive of functional constipation. When constipation develops in a child under the age of six months there are at least four differential diagnoses that must be considered. They are Hirschsprung disease, hypothyroidism, imperforate anus, and infantile botulism. Pseudo-obstruction may also be present in children prior to toilet training age, but is also seen in older children. These children may have a history of abdominal distension, pain, and intestinal paresis (Berkowitz 1996). Much of the literature supports the recommendation that parents seek professional advice of their PCP if their child’s constipation fits any of the following descriptors (Berkowitz, 1996, Di Lorenzo, 2000, Issenman et al. 1999). 1. The child is under six months of age. 2. The child’s constipation doesn’t respond to dietary changes or bowel training. Episodes of constipation last longer than three weeks. 4. 5. The child has stool soiling. If at any time, constipation is accompanied by fever, abdominal pain, vomiting or blood in the stool. 14 Using The Internet For Medical Information The public has embraced the use of personal computers and the idea of connectivity via the Internet (Baker, 2000). Th. internet provides a. additional medium for healthcare education. Growth of Internet Users. The number of Web users grows daily, in 1997, 43% of all adult Internet users accessed health care information via the Internet (Chi-Lum, 1999). Of these numbers 65% were looking for information for themselves or a family member, 81% were looking for health information from renowned experts from major medical centers, and 77% were interested in finding information for consulting with their own physician. Patient Empowerment. The latest computer technology plays an important role in educating the health care consumer (Chi-Lum, 1999, Kozma, 1999). It may help patients and their health care provider diagnose a medical condition, and in the future could allow consumers to access their individual pharmacy profiles or medical charts. Developing Effective Educational Materials Farrell-Miller and Gentry (1989), offered several suggestions for enhancing readability in educational materials. Choosing words with fewer than three syllables makes text less difficult to read. The amount of information and length of text should be limited to as few pages as possible. Print should be at least 14 point and the style plain, ornate styles such as italics, boldface or script should be avoided. Illustrations or photographs ate attention getting and enhance readability as long as they are clearly drawn or represented. 15 A model for designing and evaluating educational material was developed by Bernier and Yasko (1991). This model has frive phases that mirror the nursing process in a circular path from assessment to evaluation. The phases include, predesign, design, pilot test, implementation/distribution, and evaluation. Effective educational materials help promote the relationship between the patient and their health care provider as well as enhance patient knowledge and self-care (Farrell-Miller & Gentry, 1989). They allow the educator to provide ready access to the information in a consistent and clear format. Summary This chapter discusses the impact of education on the parent’s ability to deal with their child’s chronic constipation. It reviews the physiologic mechanism involved in the elimination process, and addresses the physical and emotional impact of the problem. Safe guidelines of strategies parents can try themselves are presented, as well as when it appropriate to seek intervention. Use of the Internet for the access of medical information and recommendations for developing effective educational materials is covered as well. The model for developing and evaluating educational materials, EPEM, by Bernier and Yasko (1991) was described. 16 Chapter 3 Methodology This chapter describes the methodology used in the development of this educational website on chronic constipation in children. The model, Evaluating Panted Education Matenals (EPEM) developed by Bernier and Yasko (1991) is used as the basis for developing this project. Operational definitions are given. The designs, in the form of the web-site outline, and instrumentation, or the actual hard copy of the web site, are laid out. Model for Evaluating Printed Education Materials The five phase EPEM model (Bernier & Yasko, 1991) was applied as the basis for the development of this educational website. The phases include; the predesign phase, the design phase, the pilot testing phase, the implementation phase, and finally, the evaluation phase. Factors to promote readability by Farrell-Miller & Gentry (1989) were instituted throughout this project. Predesign phase. During the predesign phase, the purpose, educational goals and objectives, as well as the intended audience was decided. The need and benefits of such an educational project were supported by the literature. Design phase. The design phase involves the research and decision making process, where by educational content and objectives for the project are established. In the design phase, the most pertinent information was selected based on the review of literature. Content was organized in a logical sequence to promote the flow .nd readability of the information. Factors implemented throughout the design that promote readability include; (a) keeping sentences short, (b) expressing one idea at a 17 time, (c) avoiding complex grammatical structures, (d) writing in a conversational style, using the active voice, (e) writing using the second person, (f) keeping words under three syllables as much as possible, (g) limiting technical terminology, (h) having the sentences flow horizontally, in a print no smaller than 14 point (Farrell- Miller & Gentry, 1989). Readability for this project is estimated at a ninth grade reading level. Content, as guided by the literature, includes a definition of constipation, and a comparison with what might mimic it. A simple explanation of the physiologic mechanisms involved with the stooling process is also included. Family stress as the result of chronic constipation is addressed, as is safe strategies toward prevention or resolution of the problem for families to try on their own. There is a list and explanation of danger signs and instructions as to when it would be appropriate to contact the child’s primary care provider for help. This website also includes links to other educational websites that parents might find helpful. This web site was designed using Microsoft Front Page software. It can be accessed at http//: frontpage, velocity, net/todd. Pilot test phase. The pilot test phase of this project involved having the first draft of the website reviewed by a pediatric physician and pediatric nurse practitioner. The health professionals were asked to give feedback on the clarity and accuracy of the content. This feedback was used to evaluate and revise the first draft of the website. After review of the web site content, the following suggestions were made and implemented. Navigational buttons were added to the web pages directing parents of children under the age of six months to seek medical care and evaluation for their 18 baby. On the page describing the causes of constipation, the order of the causes were rearranged to read, “Painfol/unpleasant” experience, followed by “Improper leverage and “Parental pressure”. A note was added to indicate that the cause could be a result of a medical condition. A recommendation was made that a caution be added, stating that cereals and fiber added to the diet without adequate fluid intake, can make firmer stools. In the section on bowel training, the recommendation for ten minutes of toilet sitting after meals was changed to one to two minutes per year of age, but not to exceed a maximum of ten minutes. It was suggested that hydrophilic laxatives be referred to as stool softeners, and the term laxative be reserved for stimulants and cathartics. Emphasis was placed on the importance of follow up care, and on the fact that a cure for constipation is not a single event, but a process that occurs over time. Additional recommendations for improving the readability and clarity were made and implemented as well. Tmplemention/distrubution phase The completed website was posted on the Internet. Patient care providers were then invited to use the site for the educational needs of their patients. Evaluation phase. This final phase in the development of this website might be achieved via questioner to pediatricians, nurse practitioners, and family physicians. An e-mail address is provided on the web site for questions and comments. Feedback from these sources would be useful in gauging the value and effectiveness of this educational website. 19 Operational Definitions For the purposes of this study, the following operational definitions are used. 1. Children are people from the age of six months to 18 years of age. 2. Caregivers are any adults who are in a legal and moral position to make health care decisions for a child in their care. Summary In summary, the methods used in development of this scholarly project were based on the EPEM model developed by Bernier & Yasko (1991), and factors promoting readability by Farrell-Miller & Gentry (1989). Content was determined by the review of literature. Operational definitions, design, and instrumentation are provided. 20 Welcome to The Constipation Page . Common causes ■isi Tests I Prevent & treat FAQ. I Misconceptions Danger signs! Links Helpful Hints J W-,y^ / \ / L ' This educational Web Site was developed to support and educate parents and caregivers of children experiencing problems with constipation. Click here if your child is under 6 months of age. steTeot .’sistitute Notice- The material on these ’ZerZXoVshihrs bedth care provider before hearth « he^th related program. Thankyou [Hit Counter] 21 4—4—I- What is constipation? H---- 1—I---- 1—I— 4 Common Causes !—'—!—I—I—I—!—r—4—I—f—4—I—|—I—I—|—I- Prevent & Treat Tests Danger Signs! FAQ . Helpful Hints Links Misconceptions Constipation is... Constipation is... Constipation is... Constipation is. The painful passage of dry hard stool: The most reliable sign of constipation is discomfort with the passage of a bowel movement. The inability to pass stools: These children may have a desperate urge to move their bowels, they may have discomfort in their rectal area, but even with straining, are unable to pass anything. Infrequent bowel movements: Going four or more days without a bowel movement may be considered constipation, even if the child has no pain, however, in some children this may be normaL Th,s is particularly common in exclusively breast fed infants after the first few months. Click here if your child is under 6 months of ageL 4. Discuss with your health care provider. Stool soiling: Soiling of underwear with liquid or impacted with stool. clay-like feces may be a sign that the child is Click here for common misconceptions! 22 Misconceptions — Common Misconceptions: Many parents assume that all large or hard bowel movements are a sign of constipation. Unless your child experiences pain, an inability to pass the stool, or infrequent movements (longer than 4 days between movements), this may be a normal pattern for your child. Note: Some breast fed babies after the second month or so will pass normal, large soft stool at infrequent intervals (sometimes as long as seven days). Although they may strain and grunt, they do this without pain. Click here if your child is under 6 months of age. Back 23 Acknowledgements This web site is the culmination of four years of hard work and sacrifice by me, and the people I love . It is also the final requirement for my Masters Degree in Nursing from Edinboro University of Pennsylvania. I would like to take this opportunity to thank all the people whose help and support made this web site (and graduation) possible. First and foremost, I want to thank my husband, Todd, whose unwavering confidence in me kept me trudging through the four long years of this Masters process. Thank you to my children, Logan and Aidan who have no memory of Mama not being a student. Thank you to them for taking naps, entertaining themselves, and not setting the house on fire when Mama was studying or working on the computer. Thank you to my family and friends, for providing dinners, babysitting and moral support. I couldn't have done it without you. Special i hank You To: My committee members, Dr. Alice Conway Ph.D., CRNP and Janet Geisel Ph.D., R.N., for keeping me on track and for all their help and support. Dr. Michael Webster, M.D., for taking the time to review my web site and for all the helpful feedback. Lisa Scibetta, CRNP also for taking the time to review my web site and provide feedback and suggestions. Ashley Back 24 Is Your Child Under 6 Months of Age? If your child is under six months of age, this Web site is not for you! It is important for your baby to be examined by their doctor or nurse practitioner so that a more serious underlying problem can be ruled out before your child is treated for constipation. Home 25 What Causes Constipation? i What is it? Tests Misconceptions □ □□□ Prevent & Treat FAQ Danger Signs! Links Helpful Hints Anything that disrupts your child's usual routine can potentially lead to constipation. Many older children (those beyond potty training) first experience constipation with the start of school. The pressure of having to ask permission, or stress of using a public restroom causes some children to try to hold their stool until they get home. This withholding results in a larger, harder, and drier stool. This same cycle can be applied to many situations in a child's life, for example, vacations, holidays, or just not wanting to come in from play. 26 A Painful Experience. w exXXnc^whtentoa°sf< aST§ * St°°l Or havin§ an unPleasant experience while passing it, is the number one cause of chronic constipation in children. For what ever the reason, be it a change in nasXea parental Pressure. diet, or illness, the child passes a large hard stool causing him or her a lot of pain. The child then becomes fearful of another painful event and begins to withhold their bowel movements causing them to become larger and harder and more likely to be painful when they come out. This withholding cycle is called "functional” constipation. improper Leverage. A reason as simple as not getting the proper leverage sitting on an adult size commode ( due to feet not touching the floor) can contribute to constipation. Placing a step stool under your child's feet may give them the leverage needed to produce a bowel movement. Parental Pressure. When a parent places a great deal of importance in their child having a bowel movement, or having a bowel movement on the potty, the child may choose to withhold their stool in an effort to maintain control over something they feel belongs only to them. Many parents find that the strategy that works best for-then, and reinforcement, praise, and maybe a small reward w en t e c i P tjre dav goes a movement in the potty. Not making this goal the focus of the ch,Ids enure day goes long way in reducing parental pressure. Punishment, rarely produces the desired effect, stress and fear make poor teaching tools. Medical Condition. There are number of medical conditions -^nhXTmX^T0" your child. Only your child's doctor or nurse practitioner Click here for when to_see_your healthcare_prQYldeL_ 27 Preventing and Treating Constipation at Home ClickJd^eForTrea^ Prescribe w i V' Look Below For What You Can Try At Home! IV The first step in fixing a problem is understanding it. Click here to have a look at what goes on in the body to produce a bowel movement, and how things get jammed up with constipation! What Is It? To Expect Tests Misconceptions Common Causes FAQ Danger Signs! Links Helpful Hints Two Step Strategy To Try at Home The easiest and safest method for helping your child with constipation involves two steps, changing your child's diet, and bowel training. <4- Diet Change- Constipation is often due to to a diet that does not include enough variety, fiber and fluids. Drinking or eating too many milk products can also contribute to constipation. For babies 6 months or older adding strained too*“““"“ice such as cereals, apricots, prunes, peaches, pears, plums beans, peas, orsp. daily. Avoid strained carrots, squash, bananas, and app For older chhdren (more than 1 vegetable at least three times each pears, apricots, beans, celery, peas, caumi r Child's diet Bran is an excellent natural stool softener, Add whole grains to your child s diet. 28 it and other natural whole grains can I Raisin bran, bran or whole wheat muffins, »-'oatd5U,SeJ-">“y0UrChlW'sd'et sxsrr) Me --“‘S/xr Warning: Avoid any foods that your child can not easily chew! Note: Adding fiber to the diet without increasing fluids can lead to harder stools. Increase the amount of water your child drinks. Click here to calculate your child's fluid needs. 4- Bowel Training-You can help your child establish a regular bowel pattern by sitting on the toilet after meals. (Calculate the amount of time your child should sit by multiplying your child’s age by 1-2 minutes, for example, a 3 year old would sit for 3-6 minutes. ) For children who are toilet trained. You can encourage your child to establish a regular bowel pattern by sitting on the toilet for for several minutes after meals, especially after breakfast. This is the time when the natural contractions of your child s bowels are stimulated by eating. Taking advantage of these natural contractions makes it easier, and more likely that your child will be able to produce a movement. Click .here to learn more! Note: No child should sit for more then 10 minutes Click here for helpful hints! 29 Fiber Rich Foods |1. yBran cereals yTopping this list are Bran Buds and All-Bran, 100% Bran, yRaisin Bran, Most and Cracklin' Bran are also excellent sources. [2. Whole-wheat and other whole-grain cereal products. jjRye, oats, buckwheat and stone-ground cornmeal are all yhigh in fiber. Bread, pastas, pizzas, pancakes and muffins amade with whole-grain flours. |3. yPlums, pears, and apples yThe skin is edible, and are all high in pectin. | :4o Brash or frozen green peas 5. Dried fruit, topped by figs, apricots and dates yRaspberries, blackberries and strawberries 7. Raisins and prunes 8. ySweet potato 1 9. OChemes ylO. Broccoli-very high in fiber! H.yGreen snap beans, pole beans, and broad beans y(These are packaged frozen as Italian beans, in Europe they ] yare known as haricot or french beans.) •12.ySweet corn, whether on the cob or cut off in kernels ;13.yMango M.yGreens ^Including spinach, beet greens, kale, collards, swiss chard yand turnip greens. 1 ;15.yAsparagus H 6. Baked potato with the skin y(The skin when crisp is the best part for fiber.) Mashed and yboiled potatoes are good, too-but not french fries, which ^contain a high percentage of fat. XXXUUIXXUXZXXXXXXXXXXXXXXXXXXXX' XXXXXXXXXXXXXXXXxxxxxuxxxixxxxxxxx* *'* **“* * •••••••*•‘ h7jDried beans, peas, and other legumes nThis includes baked beans, kidney beans, split peas, dried hlimas, garbanzos, pinto beans and black beans. i18.||Carrots •19 Fresh or frozen lima beans, both Fordhook and baby limas 20.^Brussels sprouts Back J 30 Calculate Your Child's Daily Fluid Needs } I I L'.e'i h_ __ ___ Age. I Wt. ______________ Total water or fluids in 24 hrs. Milliliters i ounces 8 oz. cups 6 mo. 16lbs. 950 - 1,100 ml. 28.5 - 33.0 oz. 3 - 4 9 mo. 19lbs. 1,100 - 1,250 ml. 33.0 - 37.5 oz. 4 - 5 1 yr. 21 lbs. 1J 50 ; 1,300 ml. 34.5 - 39.0 oz. 4.5 - 5 2 yr. 26 lbs. 1,350 - 1,500 ml. 40.5 - 45.0 oz. 5 - 6 4 yr. 36 lbs. 1,600 - 1,800 ml. 48.0 - 54.0 oz. 6- 7 44 lbs. 1,800 - 2,000 ml. 2,000 - 2,500 ml. 2,200 - 2,700 ml. 2,200 - 2,700 ml. 6 yr. 10 yr. 63 lbs. I 14 yr. 18 yr. 99 lbs. 119 lbs. 54.0 - 60.0 oz. J 7 - 7.5 j 60.0 - 75.0 oz. 7;5.9 66.0 -81.0 oz. 8-10 66.0 - 81.0 oz. 1 | 31 * y^pful Hints Back Helpful Hints To Make Life Easier...Helpful Hints To Make Life Easi, Making the addition of fiber and fluids to you child’s diet, and bowel training a little more fun helps your child to be a willing participant and makes managing their constipation a little easier on everyone. The following tips are things that I and other parents have had success with. 4 4 4 4 4 4 4 4 4 4 4 Sugary and or caffeinated drinks are not a good way to increase fluids in you child's diet. If your child likes water, encourage drinking some between meals or when thirsty. Otherwise, offer your child diluted fruit juice , gradually adding more water than juice. (This suggestion is only for supplemental drinking, follow your health care provider’s instructions for your child's proper nutrition) Giving your child a fanny pack with a water bottle holder is a good way to encourage your child to drink more fluids. Kids love this novel way to get a drink. ( Hint: Pack an extra shirt till they get the hang of it) Another fun way for a kid to drink is through a straw. Multicolored or twisty straws make it extra fun! Raw vegetables are a great way to add fiber to your child's diet, but pose a choking risk for many. Try grating carrots, cucumber, or zucchini on the small side of your grater, add a little salad dressing or a dab of ranch dip to it. Kids are more likely to eat vegetables if they are hungry, and if there is nothing else. Try offering vegetables before you serve the main meal, call them appetizers and have your kids eat them with tooth picks. Many kids don’t like the taste or texture of whole grain breads, they can learn to like them with some persistence from you. For a snack, try breaking fresh whole wheat bread into pieces, and rolling them into bread balls serve then with 32 something for your kids to dip in, like salsa, ranch or French dressing or peanut butter. 444 4•4 Add wheat germ to yogurt or your child’s usual cereal for some added fiber. For kids who use the big potty and whose feet don't reach the floor, have a stool in the bathroom for them to rest their feet on. This allows your child to get the proper leverage needed to expel their bowel movement. Having a timer in the bathroom set to the number of minutes you want your child to sit, allows them to see how much time there is left, and helps to eliminate the "can I be done yet?" Make Citrucel Gelatin Rounds (also works with Metamucil). Empty a 4oz. package of flavored gelatin into a heat resistant bowel. Add 4 rounded tablespoons of Citrucel to the gelatin and mix together thoroughly. Add 1 cup boiling water and follow gelatin directions on package. Pour gelatin/Citrucel mixture into a standard size muffin tin. It should make 6 individual rounds. Refrigerate per gelatin box instructions. Children age 6 years and under should have no more than 1 round per day. Children age 6 years and up should have no more than 2 per day. Take with at least two 8oz cups of fluid. 33 Physiologic process Physiologic Process Back JWW- Many parents feel that by understanding what is going on in their child’s body helps them to help their child with the problem. First Food, Then Poop After your child eats, it is a 3 or 4 hour process for the food to leave your child's stomach, wind around through the small intestines, and enter the cecum (the first part of the large intestine). It then takes several more hours to reach the rectum, where it can be expelled ( pooped out). While traveling from the cecum to the rectum, the stool in your child's intestines is moved along by powerful muscular contractions that mix it( so that water and nutrients can better be absorbed into your child's body) and propel it forward toward the rectum. These muscular contractions are strongest after meals, and on awakening. I > When the stool reaches the rectum, and the rectal wall becomes distended, there is a reflex contraction that pushes the fecal material into the anal canal. This reflex contraction happens naturally in you child's body and is not under his or her conscious control. At this point the child has the Stomach urge to have a bowel movement. Your child at this point can make a conscious decision to go to the Smail intestine potty and expel it, or to postpone it. If your child chooses to postpone having a bowel movement, he Cecii mor she uses a voluntary contraction of the internal anal sphincter and other muscles to push it back out Rectum of the anal canal. The longer the bowel movement is postponed, the more water is absorbed from it, it becomes drier and larger as it compacts with the stool that builds up behind it. Later, when your child chooses to defecate, he or she must now make a conscious and voluntary contraction of their abdominal muscles to push stool into the anal canal and to once again produce a bowel movement. 34 8 reatments Your Health Care Provider Might Try Your health care provider may choose one or more of the following common treatments for your child. It is recommended that none of these be tried with out some guidance from the health care provider who knows your child and can help you determine which is best suited for him or her. You doctor or nurse practitioner can guide you as to dosage and length of treatment. Stool Softeners and Laxatives: can be used as part of a bowel training program prescribed by your health care provider. There are several different types grouped by what they do in the intestines. The stool softeners, also called bulk forming and hydrophilic can be used safely for an extended period of time with guidance from your doctor or nurse practitioner. Stimulant laxatives are only intended for occasional use. Bulk forming - acts like dietary fiber. Products such as Metamucil, Citrucel, malt suppex and others increase the stool bulk, and allow it to absorb more water, creating a larger softer movement. Hydrophilic - attract water to the bowel. Products such as Milk of Magnesia, Phospho-soda, lactulose and others act by pulling water into the bowel resulting in the passage of soft-formed feces. Stimulant - promote accumulation of water in the bowel and stimulates intestinal contractions. Products such as Dulcolax, Sennacot, mineral oil and others act by both pulling water into the bowel and by stimulating the muscular contractions of the intestine to propel it’s contents out. Note: Avoid giving kayro syrup to babies due to the risk of botulism spore contaminating the product. Enemas: Enemas should only be given on the advice of your health care provider. They are useful if your child is having rectal pain and is need of immediate relief, or as the first step of a bowel training program to relieve acute constipation and impaction. Note: Enemas with soapsuds, hydrogen peroxide, or tap water are dangerous to children. They can result in seizures, bowel damage or deat . If your health care provider has given the OK to give an enema, a normal saline enema is the safest for children. These can be purchased at the Pharmacy or grocery store and come in pediatric size. Back 35 IBB F banger Signs I The following signs may indicate that something \more serious than constipation is going on with your child. If your child is experiencing any of WS following signs or symptoms, he or she needs to be evaluated by a health care professional. ■BBH What Is | Tests Misconceptions Prevent & Treat Common Causes FAQ J Links Helpful Hints Cail your child’s health care provider during regular hours if: 4 The child is under six months of age. 4- The child's constipation doesn’t respond to dietary changes or bowel training. 4 Episodes of constipation last longer than three weeks. 4 The child has stool soiling. Call your child's health care provider Immediately if: 4 At any time, constipation is accompanied by fever, abdominal pain, vomiting or blood in the stool. 4 Your child develops extreme pain. 4 Pain becomes constant and persists for more than 2 hours. 36 What To Expect From Your Child's Health Care Provider Home ; ■ I i Common Causes ; TAQ Tests Misconceptions Prevent & Treat Links . Helpful Hints Your child’s doctor or nurse practitioner will consider many factors when diagnosing and treating your child’s problem. The following information provided by you, can help your health care provider understand the problem your child is experiencing. 4- 4- What symptoms is your child having that leads you to believe he or she is having a problem? When did the problem start? How often does your child move his or her bowels, and how difficult is it for them to produce the stool? 4■4- 4- How is this different from how your child has been prior to the problem? What does your child eat? What and how much does your child drink? How active is your child? 37 What have you tried at home to solve the problem? Are there any other problems or symptoms in addition to your child’s constipation that you have noticed? What to Expect at a Visit: You should expect your healthcare provider to ask some or all of the above questions. 44- Your doctor or nurse practitioner will then perform a physical exam of your child, including a rectal exam. 4’4 44 Your health care provider will then develop a plan of action for your child based on the things you ’ve discussed and the findings of the physical exam. You should expect to follow up with your child's doctor or nurse practitioner to assess how your child is responding to whatever treatment was prescribed. Note: The cure for constipation is not a single event but a process that occurs over a significant period of time. It is not unusual for a child who would appear "cured" to have multiple relapses. Follow up with your child’s health care provider is crucial over the long term. Treatment frequently needs to be adjusted, what worked the first time around with your child might not be the treatment of choice for subsequent episodes. Discuss a "crisis plan" with your child's doctor or nurse practitioner that tells you what to do and when, if your child should relapse. 38 Tests Your Health Care Provider May Order Home g What Is It? |Common Causes FAQ Prevent & Treat Links Helpful H:nts Depending on the your child’s history and physical exam findings, your child ’s doctor or nurse practitioner may order any of the following tests: X-ray- also called a flat plate of the abdomen (stomach area). This test shows stool, fluid, and air in you chiids intestines. It may rule out any obvious obstructions from narrowing or growths. It may provide your doctor or nurse practitioner with information that will lead them to order more advanced tests for your child. Blood Test- to check for a problem with your chi Ids thyroid function. An under active thyroid is associated with constipation. 39 Frequently Asked Questions ; ■til What Is .It? Common Causes | What To Expect Tests Misconceptions ' / Helpful Hints Prevent & Treat Links is this a serious problem? In healthy children, bowel problems are typically transient; but left untreated, can spiral into physical, behavioral, and developmental problems that could be resistant to treatment and last well into the school age years. In most cases, with the help of the parents and health care provider, any serious long term problems can be avoided. Will my child out grow this? In most cases,"yes", children outgrow chronic constipation with your help. If a child receives proper intervention, work can be done to prevent the problem from escalating into a physical and behavioral dilemma. Ignoring the problem will not make it go away. For most children, chronic constipation becomes a problem around the potty training years, when he or she can't understand the necessity of moving their bowels. Children are very concrete thinkers and if they find the defecation process unpleasant or painful, they would just as soon postpone it forever. Treatment is designed to soften the stool so that moving the bowel is not a painful experience, and also includes behavior modification that encourages the child to develop habits conducive to a regular bowel pattern. Isn’t my child just being disobedient or willful by withholding when he and i both know he has to go? Although there is a behavioral component to chronic constipation, a child who is truly fearful of the experience may be incapable of relaxing the rectal sphincter enough to let a bowel movement pass. No amount of yelling, insisting, or punishment can make it happen. In fact, by reacting with anger promotes a power struggle that only serves to complicate the problem. 40 What is stool soiling or Encopresis (enco-pree-sis)? Encopresis, sometimes called stool soiling, is the term given to the repeated involuntary passage of liquid or clay-like stool into the child’s clothing (underwear). This applies to a child who should be toilet trained on the basis of age or developmental level. This usually occurs when the child with chronic constipation develops a fecal impaction. Liquid or soft clay-like stool is able to pass around the impaction and is not held in by the child's chronically over stretched sphincter muscle. My seven year old has stool soiling, he claims that he is not aware that it has happened. We’ve tried everything we can think of, but nothing has helped. Is it really possible that this is happening without him knowing it? When the anal sphincter is chronically overstretched for a period of time, the muscles of the rectum become lax and the nerves that convey normal sensations are dulled (see Physiology). In addition, a child who wants to please his parents or is embarrassed about something he can't control, may block the unpleasant event as a way to protect his self-esteem. So in short, the answer is yes for both physiologic and emotional reasons, a child may be unaware that stool soiling is occurring. 41 Links Whatlslt<<9 Common Causes Prevent & Treat !S FAQ Helpful Hints These are a few health related links that you might find interesting or helpful: Bowel function and Dietary fiber Kids Health National Parent Information Network Bright Futures PEDINFO: An Index of the Pediatric Internet American Association of Pediatrics Helpful Reading for Parents and Children Everyone Poops by Taro Gomi, Kane/Miller Book Publishers, 1993. Once Upon a Potty (boy & girl versions) by Alona Frankel, Harper Festival, Harper Collins Juvenile Books, 1988. Constipation in Childhood by Grahm Clayton & Ulfur Agnaarsson, Oxford University Press, 1991. Journal Article Childhood Constipation: Finally Some Hard Data About Hard Stools, Pediatrics Volume 136, Number 1, January 2000. Comments about this site? E-mail me at: ashley1966@msn.com 42 References American Academy of Pediatrics. (1981). Plant fiber intake in the pediatric diet. Pediatrics 67, 572-578. Austin-Kessner, J. (1990). Assessment of coping mechanisms used by parents and children with chronic illness. Maternal Child Nursing 15, 98-102. Baker, D. B. (2000). PCASSO. A model for safe use of the Internet in healthcare. Journal of American Health Information Management Association 71 (3), 33-38. Berkowitz, C. D. (1996). Pediatrics a primary care approach. Philadelphia, PA: W.B. Saunders Company, a Division of Harcourt Brace & Company. Bernier, M. J., & Yasko, J. (1991). Designing and evaluating printed education materials: Model and instrument development. Patient Education and Counciling, 18 (9), 253-263. Canobbio, M. M. (1996). Mosby’s handbook of patient teaching St. Louis, MO. Mosby-Year Book, Inc. Chi-Lum, B. (1999). Friend or foe? Consumers using the Internet for medical information. Journal of Medical Practice Management 14 (4), 196-8. Davidhizer, R. (1992). Understanding powerlessness in family member caregivers of the chronically ill. Geriatric Nursing 13 (2), 66-9. Di Lornezo, C. (2000). Childhood constipation: Finally some hard data about stools! Journal of Pediatrics 136 (1), 4-7. Farrell-Miller, P., Gentry, P. (1989). How effective are your patient education materials? Guidelines and evaluating written educational materials. The Diabetes Educator 15 (5), 418-22. 40 43 Futcher, A. J. (1988). Chronic illness and family dynamics. Pediatric Nursing 14 (5), 381-385. Hartweg, D. L. (1991). Dorothea Orem Self-care Deficit Theory. Newbury Park, CA: Sage Publications, Inc. Issenman R. M., Filmer B. F., Gorski P.A. (1999). A review of bowel and bladder control development in children: how gastrointestinal and urologic conditions relate to problems in toilet training. American Academy of Pediatrics 103 (6), 1346-1352. Kirchner, J. T. (1999). Digital rectal exam in children with constipation. American Family Physician 60 (5), 1530. Kozma, C. M. (1999). The Role of the Internet in Patient Empowerment. Managed Care Interface 12 (3), 73-74. Nelson, J.K., Moxness, K. E., Jensen, M. D., Gastineau, C. F. (1994). Mayo clinic diet manual, a handbook of nutrition practices. (7th ed.). St. Louis, Missouri: Mosby-Year Book, Inc. Orem, D. E. (1995). Nursing concepts of practice. (5th ed.) St. Louis, Missouri: Mosby-Year Book, Inc. A'i