| | Developing Educational Materials to Facilitate Adherence: Pediatric Thrombosis as a Case IllustrationSection EditorMary Margaret Gottesman, PhD, RN, CPNP Ohio State University College of Nursing Columbus, Ohio Adherence is universally recognized as a critical and contentious issue in the management of both acute and chronic illness in children (Becker et al 1979, Horne and Weinman 1999, Ignjatovic et al 2004, Paterson et al 2002, Thorne 1993, Thorne et al 2002, Thorne et al 2003). Among definitions of adherence, the common elements refer to the extent to which the patient acts consistently and in accordance with medical recommendations (Becker et al.; Brenner et al 2004, Cassileth et al 1980, Makoul et al 1995). Practitioners’ concerns are that nonadherence results in decreased safety and efficacy, clinical complications, reduced quality of life, and avoidable health care costs for both families and society (Sabaté, 2003). The World Health Organization (WHO) sponsored a review of the adherence literature (Sabaté), which identified five sets of factors that determine adherence: social and economic, health system/health teams, condition-related, therapy-related, and patient-related (Box 1). The WHO framework provides a comprehensive approach for understanding and addressing the many factors that determine adherence. The ability of patients to follow treatment plans in an optimal manner frequently is compromised by more than one factor. Solving the problems related to each of these factors is necessary if patients’ adherence to therapies is to be improved. There is no single intervention strategy or combination of strategies that has been shown to be effective across all patients, conditions, and settings (Sabaté; Thorne, Paterson, & Russell, 2003). Consequently, interventions that focus on adherence must be tailored to the particular illness-related demands experienced by the patient. To accomplish this goal, practitioners need to develop a means of accurately assessing not only adherence but also the factors that influence it. This article will focus on child-related factors, specifically the knowledge and beliefs that affect motivation, confidence, treatment expectations, and, ultimately, adherence. The use of thrombosis as a substantive example will be exemplified because there is a particular lack of educational material in this field. However, the principles used to develop such materials are generic and may be applied across pediatric subspecialties. BOX 1 Five dimensions of adherenceDimensions characteristics 1.Social and economic factors•Socioeconomic status •Literacy •Social inequalities (e.g., racial) 2.Health system/health care team factors promoting effective patient-provider relationships•Quality of health services •Access to reimbursement •Quality of medication distribution systems •Knowledge and training among health care providers •Service provider workload •Provision of incentives and feedback •Capacity of the system to educate families •Service provider knowledge of strategies to promote adherence 3.Condition-related demands faced by the patient•Severity of symptoms •Type of disability (physical, psychological, social, and vocational) •Rate of progression and severity of disease •Availability of effective treatments •Comorbidities 4.Therapy-related factors•Complexity of treatment •Duration of treatment •Previous treatment failures •Immediacy of benefits •Side effects of treatment 5.Patient-related factors•Knowledge and beliefs •Motivation •Confidence in personal ability •Expectations of treatment •Consequences of nonadherence Developmentally appropriate educational materials are needed to help children (i.e., children through teenage years) with thrombophilia develop an accurate knowledge of their disease and its management and thereby improve clinical outcomes (Hart & Chesson, 1998). When children have an insufficient understanding of thrombophilia and their prescribed anticoagulant therapy, they may fail to manage their condition in a way that minimizes their potentially life-threatening risk for bleeding and new clots (Moores & Vine, 1988; Wilson, Wells, & Kovacs, 2003). The educational materials must be specific to the target audience if they are to meet their learning needs. Traditionally, parents are the child’s primary caregiver and are the sole recipients of treatment-related teaching (Ferris, Dougherty, Blumenthal, & Perrin, 2001; Hart & Chesson; McPherson and Thorne 2000, Theunissen et al 2004). When teaching is focused on the parents, learning is limited to the parents. In contrast, when the teaching targets the child, both the parents and child learn (Ferris et al.; Hart & Chesson; Limbo, Petersen, & Pridham, 2003). When the child is involved in developmentally appropriate learning from the time of diagnosis, this establishes the foundation for the child’s active participation and eventual transition to independent decision-making (Haggerty and Roghmann 1972, Paterson et al 2002, Rudolf et al 1993). It must be acknowledged that children are already making active treatment decisions with or without sound knowledge (Rudolf et al.). A sample of 400 healthy children aged 9 to 16 years attending a summer camp were surveyed about medication usage. Thirty percent of these children decided what medications to take and when to take them without supervision on a regular basis, and they reported feeling confident in doing so (Rudolf et al.). A variety of child-focused education programs have been used in the subspecialties of childhood diabetes (Paterson and Thorne 2000, Snoek and Visser 2003) and asthma (Brown et al 2004, Evans et al 2001, Guevara et al 2003, Hansson-Sherman and Lowhagen 2004) and support the assumption that child-focused education positively influences the child’s attitude toward his or her illness and improves disease-related outcomes (Brown et al.; Guevara et al.). Thrombophilia Population and Methods  The education materials described in this article were developed for children aged 7 to 19 years with, or at risk for, thrombophilia who received care through the Pediatric Thrombosis Program at the Stollery Children’s Hospital, Edmonton, Alberta, Canada. Children with thrombophilia have confirmed venous or arterial thrombosis or are at an increased risk for thrombosis. The incidence of pediatric thrombophilia has increased because of changing treatment patterns in tertiary care pediatrics (i.e., the increased use of central venous lines and cardio-surgical interventions (Male et al 2003, Monagle et al 2004). Suboptimal adherence to prescribed treatment regimes may result in serious sequelae (Male et al.; Monagle et al.). The sequelae of venous thromboembolism are life-threatening and can include organ failure, pulmonary embolism, embolic stroke, and sepsis. Thromboembolism also is associated with long-term complications such as loss of central venous access and post-thrombotic syndrome, which is characterized by pain, swelling, collateralization of vessels, and poor venous return (Kuhle et al., 2003; Monagle et al.). The rate of recurrent thrombosis and associated mortality rate are reported to be 8.1% and 2.2%, respectively, in children with acute lymphoblastic leukemia and central venous line–related thrombosis. Post-thrombotic syndrome occurs in up to 14% of children diagnosed with venous thromboembolism (Kuhle et al.). A search of the literature that addressed the development and use of children’s health education materials was completed using MEDLINE, CINAHL, and ERIC databases (1996-2005). The MeSH headings and key words used to select articles included “reading,” “readability,” “pamphlets,” “teaching materials,” “consumer health information,” “patient information needs,” “child,” and “adolescence.” The search was restricted to English language articles that focused on children. Additional articles were identified from the bibliographies of included articles. We extracted information on the importance of child-focused education, as well as the requisite educational principles that would be used in the development of the teaching materials. Based on this review, the authors identified and incorporated eight key design features that facilitate child learning. These features and the underlying principles will be discussed in the context of the included thrombosis module, Protein C Deficiency (FIGURE 1, FIGURE 2, FIGURE 3, FIGURE 4). This module is one of 14 modules that have been developed describing prothrombotic conditions and therapy for children. The handouts contained a variety of graphic images and required software that would support the design requirements. A number of software packages were available for the development of the educational pamphlets. Microsoft Publisher (Version 2003) was selected because of its ease of use, affordability, design capacity, and availability of the software. The following sections will discuss eight principles that may be used to guide the development of child health materials. The intent of describing underlying principles is to enable readers to use them in other clinical contexts. Design Features for Children’s Educational Materials 1. Cognitive Development Children’s ability to learn about illness is dependent on their level of social and cognitive development (Carandang, Folkins, Hines, & Steward, 1979). Theories of developmental cognition provide insight into the child’s understanding of bodily functions and illness. Erikson’s theory of personality development suggests that children aged 7 to 10 years are intellectually curious and are motivated to perform successfully (Erikson 1959a, Erikson 1959b). At this age, children are capable of comprehending basic knowledge of their inner body and are curious about their bodies and how they work (Bibace and Walsh 1980, Gallo et al 2005, Glaun and Rosenthal 1987, Piaget 1962). Teaching interventions at this age will capitalize on their readiness to learn (Menacker, Aramburuzbala, Minian, Bush, & Bibace, 1999). As children grow into adolescence, both their ability to learn and understand about bodily systems and their self-competency skills increase. Education aimed directly at the child or adolescent empowers them to manage their condition in a healthy manner. Prior to 7 years of age, children commonly have misconceptions and may believe that illness is caused by magic, contagion (Koopman, Baars, Chaplin, & Zwinderman, 2004), or as a punishment for bad behavior (Perrin and Gerrity 1981, Piaget 1951). Educational materials need to address these potential misconceptions to promote an accurate understanding of the pathology and rationale for treatment. 2. Children’s Learning Priorities It is important for the practitioner to listen to the child and their parents to determine what they want to know (Korsch 1984, McPherson and Thorne 2000). To determine the clinical content for the educational materials, the authors discussed learning needs with children and families attending the pediatric thrombophilia clinic. Their four key questions were: “What is it?” “What does it mean for me?” “How did I get it?” and “What do I do about it?” Moreover, these four questions were used as major headings to organize the content in the different educational modules. Health care professionals using these materials must determine what questions the child and parent bring to the teaching session (Korsch, 1984; McPherson & Thorne) and use the materials as a means of generating questioning and inquiry. Patient learning priorities evolve over time and become more complex as they become more experienced in managing their condition. Well-designed learning materials provide a conceptual foundation from which increasingly sophisticated learning can occur. 3. Color Code Key Themes Color serves to awaken the learner because it attracts the interest and curiosity of readers, motivating them to read on. The use of color has two purposes: first, to stimulate inquiry, and second, to assist the learner to encode the information into memory (Day 1980, Heibeck 1985, Sassenrath 1979). The use of color leads the learner through the written material by means of carefully designed changes of color (Hoffman, 1985). Sudden changes in text color or style cue the reader’s attention and are a key strategy for telling the reader that subsequent information is important, or that it addresses a different topic (Basu et al., 2006). Color coding is used to represent themes both in text and in illustrations (Day; Heibeck; Monsivais and Reynolds 2003, Moore 1977; Peterson, 1976; Sassenrath). For example, in the thrombophilia model (Appendix A), different shades of yellow are used to identify the inhibitors of coagulation—Protein S, Protein C, and Antithrombin—in the text, and each of the illustrated inhibitors have yellow hats or are shades of yellow. In describing the coagulation cascade, a green font and the words “turned on” are used to denote activation of the coagulation cascade. Different shades of red are used to represent the clotting factors and all blood clots. 4. Concrete Representation of Abstract Concepts Piaget argued that children organize information into “schemata” as they interact with their environment. When a child encounters new information, existing schemata are then reorganized and adapted, and new schemata are developed as necessary. In Piaget’s stage of concrete operations, children develop knowledge by taking a singular concrete experience and then generalizing it to a similar situation, or to an abstract concept (Egan 2001, Piaget 1962, Wilson 2000, Wilson 2000). Using a concrete experience to represent an abstract concept helps the child conceptualize the abstract thought in a meaningful way (Brenner et al 2004, Theunissen and Tates 2004). For example, children are familiar with the game of dominoes and how a series of dominoes fall in a cascading sequence: this concrete schema is used to represent the abstract concept of the coagulation cascade. Children have existing knowledge of flagmen who direct and slow road traffic to prevent injury during construction. This analogy is used to demonstrate the abstract concept of the inhibitors of coagulation. The flagmen wearing yellow hats denote Protein S, and their yellow “slow” signs represent Protein C. The remaining inhibitor of coagulation, Antithrombin (AT), is represented by the puppies wearing yellow work hats. Each of these three inhibitors slow the falling coagulation cascade represented by a red domino for each factor. For each new section of the teaching materials, these concrete representations are consistently applied so that a child can build on existing schemata. In Multiple Mode Learning, Gardner offers a theory of multiple intelligences that suggests that children learn best through a combination of visual, auditory and textual modes (Brualdi 1996, Gardner 1983, Gardner 1991, Gardner and Hatch 1989). Wickens (1992) found that the use of both textual and pictorial coding will enhance learning by emphasizing the different properties of the information being presented (Brenner et al 2004, Wickens 1976). Moreover, information will be encoded and stored in two separate cognitive processing systems that can be accessed by the learner. Nonverbal symbols (illustrations) simplify difficult concepts and frequently are being used as a method for conveying information. Patients showed a preference for textual information combined with pictures (Bromley 2001, Kiefer 1984). When presented in combination, comprehension (Hameen-Anttila, Kemppainen, Enlund, Bush Patricia, & Marja, 2004) and therapeutic adherence were maximized (Sojourner & Wogalter, 1997). Colored illustrations have a motivational effect that increases the likelihood that the reader will attend closely to the information provided in the text. Well-designed pictures that capture the concept and accompanying text will help the learner to organize the content into meaningful schemata that can be stored in long-term memory and then retrieved (Sojourner and Wogalter 1997, Szabo and Hastings 2000, Theunissen and Tates 2004). In FIGURE 1, FIGURE 2, FIGURE 3, FIGURE 4, the coagulation cascade is illustrated by a series of dominoes and the concept of homeostasis is represented by a balanced teeter-totter, and these are explained in the corresponding text. The coagulation cascade, risk factors, mechanisms of inheritance, and safety issues are primary illustrations that are repeatedly used throughout the series of pamphlets. A third component of Gardiner’s multimode intelligences is auditory (Gardner 1993, Gardner 2000). Educational materials must be integrated with verbal discussion to determine what the child and his or her parents understand what needs to be clarified and whether all key concepts have been covered. To be effective, the educational materials must be used as a springboard for active learning, rather than as a tool for self-learning. 5. Thematic Repetition Repetition is used to reinforce key messages (Bush et al 1999, Kinzie 2005). One of the core concepts in thrombosis is the coagulation cascade. This is represented repetitively by the falling dominoes, regardless of whether defining “good clots,” “bad clots,” or clotting in the presence of specific deficiencies. Risk factors for pathologic clotting are displayed in the blue bubble. These risk factors include the presence of a central venous line, trauma, surgery, the casting of a limb, air travel greater than four hours in duration, or immobility and pregnancy. It is critical for children to understand individual risk factors because they are the focus of preventive management. To emphasize the concepts that are critical to children’s understanding of prevention, the cascade and the risk factors are emphasized through repeated and simultaneous use of both visual and textual modes. 6. Incremental and Sequential Learning Learning starts with the discussion of basic concepts and then builds on those concepts in a logical sequence (Bergan 1979, Catellani 1991, Resnick 1970). In our example, the first “building block” is the notion of blood clots. To this we add the idea of “good and bad clots.” Next, clotting factors are introduced, and then combined to represent the coagulation cascade. This incremental learning principle was applied to the discussion of veins and basic anatomy, and to the role of key risk factors. 7. Reading Level These educational materials are written at a grade three reading level, which corresponds with the developmental age characterized by peak curiosity and readiness to learn about their bodies. While the materials are designed for children, it is recognized that their parents also will rely on them as ongoing references. The recommended literacy level for adult materials is grade five equivalency (Wilson 2000, Wilson 2000, Wilson and McLemore 1997, Wilson et al 2003) and grade three for school-aged children. In this complete series of thrombophilia handouts, the Flesch-Kincaid reading level ranged from grade 3.1 to 3.9. 8. Provide Evidence-based Information To ensure that the content of the education materials was evidence-based and reflected internationally accepted standards of practice in pediatric thrombosis, the 2004 guidelines for pediatric antithrombotic and thrombolytic therapy developed by the American College of Chest Physicians Consensus Committee (Monagle et. al, 2004) were used. The content specific to pathophysiology and clinical management was reviewed by an expert panel comprised of 40 hematologists (both adult and pediatric) specializing in thrombosis who attended the Thrombosis Interest Group of Canada Symposium, October 2004. The consensus of the expert panel was that the content was accurate, evidence-based, and should be made readily available to thrombosis practitioners and patients. Conclusion Developing high-caliber materials that will meet the learning needs of children though their teenage years will enhance treatment adherence is much more complex than most health care professionals realize and requires that the educator be attentive to the principles described in this article. Educational materials need to be child-friendly and fun and must attend to what children want to know about their condition so that the child’s interest is captured and maintained. The information provided must be consistent with the child’s level of cognitive development. Key principles of teaching and learning such as color coding, concrete representation, multimode learning, repetition, and incremental learning are critical to engaging the learner.terview. Finally, verbal discussion to clarify the child’s questions and understanding of the concepts is essential. 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PII: S0891-5245(07)00086-7 doi:10.1016/j.pedhc.2007.02.011 © 2007 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. | |
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