Children With Chronic Medical Conditions - Angelfire

P1: JVP Journal of Developmental and Physical Disabilities [jodd]

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C 2004) Journal of Developmental and Physical Disabilities, Vol. 16, No. 1, March 2004 (°

Children With Chronic Medical Conditions: Recommendations for School Mental Health Clinicians Laura A. Nabors1,2 and Heather D. Lehmkuhl1

Children with chronic medical conditions are typically included in regular education settings. School mental health clinicians can play a key role in enhancing the social and cognitive development of these children. This manuscript presents a review of literature indicating ways to assist children with medical conditions in schools. Information about assessment, family-centered interventions, and school reintegration programs is reviewed. Additionally, suggestions about how clinicians can assist with school absences, compliance with medical regimens, case management, teacher training, counseling parents, and improving social acceptance of these children are presented. Lobbying for comprehensive educational planning for children with medical conditions is a goal for the future. KEY WORDS: schools; children with medical conditions; school services.

Because of medical and technological advances, more young children with chronic medical conditions, such as illnesses and physical limitations/ disabilities, are being included in regular education settings. Mental health clinicians have opportunities to play an important role in enhancing the development of these children in school settings (Brown, 1995; Phelps and Landau, 1995; Thies, 1999). However, unless their condition is severe, these children may not receive the academic and psychosocial support they need at school. At the Genentech Conference on Comprehensive Care for Childhood Chronic Illness, a group of national experts met to identify critical 1 Department

of Psychology, University of Cincinnati, Cincinnati, Ohio. whom correspondence should be addressed at Mail Location 376, Room 429 Dyer Hall, Department of Psychology, University of Cincinnati, Cincinnati, Ohio 45221-0376; e-mail: [email protected].

2 To

1 C 2004 Plenum Publishing Corporation 1056-263X/04/0300-0001/0 °

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factors influencing comprehensive care for children with chronic medical conditions. Schools emerged as one of the core systems that need to be involved in comprehensive treatment plans for these youth (Drotar, 2001). At the same time that increased national attention was directed to schools as primary care settings, the experts also realized that professionals in this setting need to be more involved in treatment planning and more informed about critical issues for these children (Drotar et al., 2001). Mental health clinicians working in schools (SMH clinicians) are in an excellent position to provide support, counseling, and guidance for children with chronic medical conditions and their families (Perry and Flanagan, 1986). As a support for the child and family, the SMH clinician can help them to cope with issues related to illness type and severity, side effects of medications, adherence to medication and dietary regimes, school reentry after hospitalization, and mental health issues or problems with social acceptance. SMH clinicians also can play a vital role in assisting children, who have become or are becoming dependent on their parents or have significant anxiety or fear related to their condition (Phelps and Landau, 1995). In these roles, and as a support person, the SMH clinician can become a key player in providing comprehensive care to children with chronic medical conditions. In this paper, we present information on chronic conditions (e.g., definition, prevalence, assessment), discuss the importance of family- and childcentered care, review problems faced by children with chronic conditions (e.g., frequent absences, adjustment issues), and review roles for SMH clinicians working with children who have chronic medical conditions. Consistent with a noncategorical or generic approach, we present an overview of common problems for children that occur across different types of medical conditions, along with guidelines and recommendations for assisting SMH clinicians. SMH clinicians also can play a key role in administering intelligence and achievement tests to monitor change/stability of the child’s cognitive and academic skills. However, the emphasis of this paper is to discuss ways in which SMH clinicians can support children and families. As a school support person and liaison between the school and the medical team, the SMH clinician can contribute to enhancing academic achievement, social integration, and emotional adjustment for children who have chronic conditions (Sexson and Madan-Swain, 1995; Thies, 1999). CHILDREN WITH CHRONIC MEDICAL CONDITIONS Definition Stein et al. (1997) proposed a definition of chronic illness conditions that we believe is very useful. They define chronic conditions as those lasting for more than 1 year that produce, “. . . limitations of function, activities, or social



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role in comparison with healthy age peers in the general areas of physical, cognitive, emotional, or social development. Additionally, these conditions may cause dependency and requirements for special care for youth in one or more areas such as, . . . medications, special diet, medical technology, assistive devices, and personal assistance” (p. 345). Prevalence About 15–20%, or about 10.3 million, of the children in the United States live with a chronic medical condition (Mescon and Honig, 1995; Stein and Johnson-Silver, 1999; Tarnowski and Brown, 1995). Severe impairment may be defined as significant or serious cognitive, health, or physical impairments as a result of the chronic illness or disease (Mescon and Honig, 1995). Most children have mild or moderate levels of impairment and can be included in regular classroom settings (Thies and McAllister, 2001). Estimates of the prevalence of chronic conditions vary on the basis of the definition of illness and methods used to collect data (Stein and JohnsonSilver, 1999). Further, incidence rates may differ between various schools or districts (Lynch et al., 1992). Some of the more common chronic conditions for youth include asthma, diabetes, recurrent abdominal pain, cystic fibrosis, and cancer. SMH clinicians often work with children who all have different illnesses; therefore, learning about common issues, such as social isolation or frequent school absences, provides a good background for working with these youth and their families. Because most children with chronic conditions are not severely affected, they typically are able to be included in regular education settings and individual education planning may not be required (Thies and McAllister, 2001). However, about 40% of children with chronic medical conditions do experience some type(s) of school-related problems. Support, in terms of developing strategies to cope with special health care needs and related psychosocial and educational issues, often is beneficial in improving school functioning and peer acceptance. Identification and Assessment School teams often rely on using a diagnosis or label to identify youth who require special care. However, providing information on the child’s abilities and functional consequences of their medical condition may be a more practical way to describe children’s abilities so that appropriate goals may be developed (Stein et al., 1993). The Questionnaire for Identifying Children with Chronic Conditions (QuICCC; Stein et al., 1997) is a measure that was developed to help identify children with chronic conditions in schools. This measure assesses parental perceptions of the levels of variability, differences

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in symptoms, and differences in disease severity for their child (Stein and Johnson-Silver, 1999). Mental health clinicians can play an important role in schools, by helping with assessments of functional abilities for children with chronic conditions (e.g., Functional Disability Inventory; Walker and Greene, 1991), so that optimal goals for enhancing their development are designed. Rodrigue et al. (2000) compiled resources for assessing children’s health in their book entitled, Child Health Assessment: A Handbook of Measurement Techniques. This text is an excellent resource for finding measures to assess child, parent, and teacher perceptions of and other key issues related to children’s chronic medical conditions.

Family-Centered Interventions In addition to assessing children’s abilities, it is essential to examine the needs of parents, as well as family lifestyle, to develop the best care plans for youth with chronic medical conditions. Additionally, it is imperative to design interventions with family strengths in mind (Rolland, 1987). A “family-centered” model of care, outlined in a report from the Surgeon General in 1987, emphasizes family needs and strengths, the impact of cultural influences, and the developmental level of children as primary concerns for professionals developing individualized programs for children with chronic medical conditions (U.S. Department of Health and Human Services, 1987). Putting the family “first” is based on the core philosophy recognizing that, “. . . the family is the constant in the child’s life, whereas the service systems and personnel within those systems fluctuate” (Johnson et al., 1992, p. 3). The family-centered model of care may be an optimal theory to reflect in educational plans. These plans become even stronger when they include a “strengths-based” focus in terms of the child’s skills, and when they include goals for fostering the child’s social and emotional development (Anderson et al., 2001; Drotar et al., 2001). Moreover, it also is critical to develop plans that consider the composition and capabilities of the family for children with different conditions. To illustrate, interventions may differ for a child with end stage renal disease, who has a very young mother and father, who are both working, than for the same age child, with a mother who is a homemaker and whose father owns his own business. In the latter situation, the child’s parents can provide transportation to and from dialysis, whereas the child with younger parents may benefit from receiving transportation assistance. Or, a child who has diabetes, whose mother has a very limited income and many children, may need to have special lunches prepared at school. On the other hand, the



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mother of another child with diabetes, from a higher income family who has no siblings, may have the resources and time to pack an appropriate lunch for school. School Reentry/Reintegration Programs Clinicians can volunteer to develop and lead programs that help the child reenter school after a hospitalization or period of illness. The literature contains many examples of school reentry or reintegration programs for children with different types of illnesses. For instance, Rynard and colleagues provided excellent suggestions outlining roles for developing school support programs for children with cancer (Rynard et al., 1998). Although this program focused on helping youth with cancer, most of their recommendations addressed noncategorical or general issues faced by children with many types of chronic medical conditions. They described several key roles for SMH clinicians, including (1) helping children cope with frequent absences; (2) providing counseling and support for parents and children; (3) teaching children strategies for coping with medical fears; (4) assisting children and families who must manage side effects related to medical care; (5) developing interventions for the classroom as well as emergency medical plans; (6) consulting and collaborating with parents, school staff, and the medical team; (7) assisting in developing educational plans and developing plans to improve adherence to medication regimes, self-care at school, or classroom behaviors; (8) assessment and intervention to improve academic and cognitive functioning; and (9) providing counseling and guidance for children to facilitate their coping with emotional and behavioral problems. Another model school reentry program is the “Health and Education Leadership Project.” The thrust of this program is emphasizing a developmental approach and the importance of family-centered care for children with chronic conditions and their families (Thies and McAllister, 2001). Interventions are based on a manualized program with materials that can be disseminated to improve teacher education. This model also is based on a noncategorical approach, so that interventions can be used to help children with different conditions. The developmental emphasis of the program ensures that the basic principles underlying this program are applicable at different age levels. Both of these aspects of the program, as well as the teacher education component, are distinct advantages. In contrast to the general nature of the Health and Education Leadership Project, most of the school reentry programs we reviewed focused on designing and evaluating programs for specific illnesses or conditions, such as cancer or traumatic brain injury (see review by Prevatt et al., 2000). Many programs were lead by a “transition liaison” or coordinating team whose

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purpose was to provide information to school staff and teachers, provide consultation and case management services, and develop a working medical plan for the school. Other goals for most programs included (1) sustaining or improving attendance and academic achievement for the target child, (2) educating classmates about the child’s condition to facilitate understanding and foster peer relationships, (3) teacher education and support, and (4) family support. Additional areas for intervention were the mental health needs of the target child and his or her family and improving social interactions and peer relationships (Madan-Swain et al., 1999; Sexon and MadanSwain, 1995). Exemplary programs often provided long-term follow-up to maintain gains or improvements in the target child’s academic achievement and psychosocial functioning (Worchel-Prevatt et al., 1998). Descriptions of model programs and one comprehensive review article, both of which offer additional suggestions or guidelines, are presented in Table I. To make existing programs more “user-friendly” for school staff, more general programs, like the Health Education and Leadership Project, that address common problems consistent across medical conditions, may need to be developed (Thies and McAllister, 2001). It may be difficult for school teams to implement and evaluate the effectiveness of many of the more focused or “illness-specific” programs. SMH clinicians and other school staff usually work with a relatively small number of children, of different ages, with various medical conditions. Thus, programs designed to address common problems encountered by children with many different types of illnesses (e.g., poor attendance, isolation from peers) need to be developed. Additionally, it will be important for programs to adopt a developmental perspective, aimed at addressing concerns for very young children (preschool age), elementaryschool-age children, and older children (middle and high school age).

Absences One main function of school reentry programs and another key role for a SMH clinician is to help the child and family cope with problems related to frequent absences for children who have many medical appointments or frequent hospital stays. Missing more time at school than classmates may cause these children to fall behind academically (Weitzman et al., 1986). Symptoms related to chronic conditions, such as pain associated with Juvenile Rheumatoid Arthritis or sickle cell disease, may also result in frequent absences. Associated weakness, fatigue, and nausea, in addition to continued experiences of chronic pain, may further impair the child’s functioning in the classroom and when interacting with peers (Sexson and Madan-Swain, 1995). Consequently, when developing educational plans for these children,



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it becomes important to plan for times when home schooling or tutoring may be necessary. Compliance With Medical Regimes Some youth, especially those in their teenage years, may have difficulty following medical instructions or taking their medication as instructed. Mental health clinicians can design and monitor interventions to assist the child in adhering to medication schedules, dietary restrictions, and other instrucTable I. Model School Reentry/Reintegration Programs Author Sachs (1980)

Farmer and Peterson (1995)a WorchellPrevatt et al. (1998)

Barrett (2000)

a Indicates

Who delivered the intervention Vocationaleducational counselor and multidisciplinary team members

Intervention groups

Program focus/description

“Return to School Program” was part of a home-based intervention, which included redesigning school environment to reduce barriers, arranging for tutors, child and family counseling/support, and education of teachers and classmates Multidisciplinary Target child and Assessment-focused program, team parents goal is to determine the child’s academic needs, develop an IEP, and coordinate sharing of information and interventions with teachers Reentry Team: School staff, “School Reentry Program for Program teachers, parents, Chronically Ill Children” coordinator, two and target child included assessment of field workers, and a academic and psychosocial multidisciplinary needs for the target child and liaison team family. School- linked services consisted of teacher education and classroom presentations to peers Nursing student Family, target child, Care Manager served as a (title: care school staff/teacher liaison between the family, manager) school, and health care professionals, attended educational planning meetings, helped coordinate health care appointments and missed homework, and provided educational information for school health care staff and teachers review article.

School staff, family, and target child

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tions. This is very important for children with conditions such as diabetes (e.g., adhering to dietary restrictions), asthma (e.g., using inhalers), or cystic fibrosis (e.g., complying with physical therapy and instructions for clearing lungs). Becoming familiar with the symptoms of these conditions is a first step. As a second step, the SMH clinician should become familiar with the child’s medication needs or schedule, steps for self-care in the classroom, and emergency plans for the school setting (Lynch et al., 1992). Taking medications and following special diets can make young children feel different from their peers and these needs also may cause them to receive additional, and at times unwanted, attention from peers or adults. SMH clinicians can intervene to help these youth by providing counseling, educating classmates, working with teachers and school nurses, and designing incentive systems for helping children take medications and follow special diet plans or comply with other medical instructions. For example, researchers have used a combination of education and a reward system to encourage young children with asthma to adhere to a medication regime requiring administration of inhaled corticosteroids (da Costa et al., 1997). Progress, in terms of improved disease outcome, was assessed with repeated pulmonary function testing, and adherence to inhaler use was measured with an electronic chronolog monitor. Although this intervention was effective, some children may have felt self-conscious given the repeated monitoring of their physical status. Therefore, another method for examining children’s adherence, which may be less intrusive and thus work better for shy or self-conscious children, is through the use of daily self-reports by children and teacher and parent reports about the child’s rate and/or degree of adherence. Case Management In his or her role as a case manager, the SMH clinician can work to support the child by linking information between the medical, school, and family settings (Sexson and Madan-Swain, 1995). Additionally, the SMH clinician can assist in organizing health services for the child and help to promote communication between medical providers and educators (Patterson and Gerber, 1991; Stein, 1986). Helping educators and medical providers to take a team approach to working with the child, may promote comprehensive care for the child including crucial emergency management plans (Gordon et al., 1998). Mescon and Honig (1995) reported that the child should be a key collaborator in forming the team, along with teachers, parents, and medical personnel. If forming a team or facilitating direct communication between the medical team, teachers, parents, and the child is not possible, then the SMH clinician can act as a liaison, transferring information between parties (Mescon



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and Honig, 1995; Sexson and Madan-Swain, 1995). The SMH clinician can educate teachers about the nature and effects of the child’s illness and educate the medical team about important behavioral and self-care issues in the classroom and at school. Moreover, the SMH clinician can help the teacher and the medical team to understand the nature of family stressors, such as worries about recurring medical emergencies, extended hospital stays, and medical bills. Also, the SMH clinician can relay information about teachers’ concerns regarding school absences, adjustment in the classroom, or academic achievement to the child’s parents (Schuman and La Greca, 1999; Thies, 1999). To further assist the medical team, the SMH clinician can provide information about the availability of health care at the school (i.e., many schools have only part-time nurses staffing health centers), the physical layout of the school, and access to emergency services. As medical teams and pediatricians have become increasingly busy, their availability to disseminate information and provide training for schools and caregivers has become more limited. This has become increasingly problematic, because medical and technological advances have increased opportunities for children with moderate and severe chronic illnesses to participate in regular education settings. Parents with chronically ill children also often express needs for tutoring services and home schooling (Lynch et al., 1992). As case managers, SMH clinicians can contact pediatricians and specialists and request letters documenting the nature and severity of the child’s condition. This information can then be presented to school personnel as a justification for the request for additional educational services.

Teacher Training In the role of consultant, SMH clinicians can become a valuable source of information for teachers, who may not have had any previous experience or training, or feel that they have inadequate knowledge for working with children with chronic medical conditions (Frieman and Settel, 1994; Johnson et al., 1988). When beginning to work with teachers, an assessment of their knowledge of various chronic medical conditions will provide a starting point for developing workshops or resources to enhance their knowledge. Unfortunately, many teachers have not had courses covering the impact of chronic medical conditions, and often have limited resources for learning about the health, educational, and psychosocial issues for youth with these conditions (see Haslam and Valletutti, 1996). Improving their knowledge, so that teachers are not afraid of unlikely consequences or do not make premature conclusions about a child’s health, may allow teachers to feel

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Nabors and Lehmkuhl Table II. Educational Resources for SMH Clinicians and Teachers Resource

Description

Resources for school staff: (1)Managing the School Age Child With a Chronic Health Condition: A Practical Guide for Schools, Families, and Organizations (Larson, 1988); (2) Chronically Ill Children and Their Families (Hobbs et al., 1985) References for Young Children: (1) Preschool Children With Special Health Care Needs (Urbano, 1992); (2) Caring for Children With Chronic Conditions: Training Guides for the Head Start Learning Community (Bowman and Associates, Administration for Children, Youth, and Families, 1998) Bibliography (1) Guidelines and Standards for Children With Special Health Care Needs: Bibliography of Materials from the NCEMCH Library (National Institute on Disability and Rehabilitation Research, 1998); Teacher Training Guides: (1) Awareness of Chronic Health Conditions: What the Teacher Needs to Know, British Columbia Department of Education (1995); (2) Medical Problems in the Classroom: The Teacher’s Role in Diagnosis and Management (Haslam and Valletutti, 1996)

Resources review standards of care and medication needs, guidelines for academic planning and promoting positive behavior in the classroom, and discuss psychosocial issues for children with chronic illness and their families Resources review guidelines for preschool workers covering management of health care needs and early identification of needs related to chronic illness

Resource presents guidelines, standards, and research articles addressing home and school care for children with chronic medical conditions. Useful for parents, children, school staff/teachers, and health care providers Resources offer suggestions for teachers, including information on etiologies, symptoms, outcomes, and tips for medical maintenance in the classroom, strategies for classroom management, etc.

more informed and hopefully more comfortable in the classroom. A list of educational resources, for SMH clinicians, teachers, and school staff, is presented in Table II. Counseling Parents Parents often have significant concerns about how their child will do in school. And, some parents unwittingly show their worries about their child’s health (Sexson and Madan-Swain, 1995). This, in turn, may increase their child’s anxiety, dependence, and illness-related concerns. Parents also may become overly protective of their child’s health. This may increase the child’s feelings of vulnerability when separated from his or her parents, resulting in separation anxiety or school phobia. The SMH clinician can offer services for the child (e.g., individual therapy, behavior management planning) and counseling for parents to assist the child and parents in overcoming issues related to dependence and fear of separation.



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Occasionally, parents may feel that their child’s illness should be kept a secret. Others, to protect the confidentiality of their child, may hold back information about medications or knowledge about the course of the disease (Frieman and Settel, 1994). This makes it difficult for the teacher to understand the child’s needs and foster his or her academic and psychosocial development. If there is any chance of complications or symptoms occurring in the classroom, the SMH clinician should encourage parents to inform their child’s teacher(s) and school health care staff, and emergency plans should be developed. Parents of children with more severe illnesses face more complicated and serious concerns. For example, parents of children who have received organ transplants may be worried about infection or catching colds, because their child’s immune system is compromised. Parents of children with serious conditions may need to express and explore their concerns in a therapeutic situation, before they can allow their child to reenter the school setting. SMH clinicians working in the schools can provide needed therapy that will help parents cope with their child’s condition. Improving Social Acceptance Some, but by no means all, children with chronic conditions may experience social problems at school. Identifying children who have social skills deficits or who are having some difficulty being accepted by peers is a first step in understanding whether intervention is necessary. Children with chronic medical conditions may report feeling “different” from peers for many reasons. For instance, they may be physically challenged or look different, which can be related peer rejection (Center and Ward, 1984). Feeling different may cause some of these children to isolate themselves from their peers, reducing their opportunities for social interactions and making friends (La Greca and Shuman, 1999). Other factors, such as severity and type of illness, play critical roles in children’s adjustment and social acceptance. Specifically, children who have severe levels of impairment may be more isolated and face more rejection by peers (Graetz and Shute, 1995). Additionally, children with central nervous system impairments resulting from their condition (e.g., cerebral palsy, HIV, sickle cell disease) or treatment of their condition (e.g., extensive chemotherapy for children with cancer), or children who are cognitively challenged, are at increased risk for poor social acceptance and adjustment problems (Nassau and Drotar, 1997). These children may be isolated from social interactions with peers who are developing typically, because they are placed in special education settings or rehabilitation facilities. Also, cognitive limitations, ranging from mild neuropsychological impairments, to significant learning disabilities, to progressive encephalopathy, may limit their ability

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to understand and learn complex patterns of social interaction (La Greca and Shuman, 1999). SMH clinicians can design several types of interventions to improve peer relationships. First, they can develop educational interventions to assist classmates who are developing typically understand functional deficits for children who have chronic medical conditions. Second, they can work with the target child to improve his or her social skills or ability to relate to his or her classmates. Third, they can design interventions to improve the physical space and layout of the classroom or playground, in order to improve chances for interaction between the target child and his or her classmates. Fourth, clinicians can work with educators to design cooperative interventions, where groups of children work together to attain a common goal, as these types of interventions may improve the acceptance of children who are neglected or rejected by their peers (La Greca and Shuman, 1999; Sexon and Madan-Swain, 1995). As mentioned, medications may impact children’s abilities to relate to classmates, if they cause mood swings or excessive lethargy. Negative mood states, such as irritability (e.g., side effect of steroid use), can damage or alter social interactions. Continued anxiety about health issues, can cause the child to be anxious and then become depressed. Participating in therapy or counseling, may help the child overcome illness-related anxiety, depression, irritability, or other negative mood states. Preventing or alleviating these types of mental health problems for youth with chronic conditions will promote their adjustment to school and increase opportunities for positive interactions with peers (Patterson and Gerber, 1991). Although there is an elevated risk for social problems, it is important to consider that children with chronic conditions and their families, “do not differ substantially from healthy youngsters in terms of disease-specific personality patterns or prevalence of severe emotional disorders” (La Greca and Shuman, 1999, p. 289). Thus, it may be appropriate, in a majority of cases, to interpret children’s psychosocial issues as responses to a recurring, chronic type of situational stressor. By educating the child’s classmates about the child’s condition and by helping the child learn strategies for coping with illness symptoms that impact their social interactions (e.g., physical limitations), SMH clinicians can foster acceptance for these children. In cases where appropriate, enhancing the child’s social interaction skills may facilitate his or her acceptance in the classroom.

SUMMARY In this paper, we have reviewed general information about roles for SMH clinicians working with children who have chronic medical conditions.



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It is critical, however, to remember that each child will present with very different issues, based on his or her personal characteristics, family coping and development, and disease- or illness-related factors (e.g., type and course of illness; severity of the condition). It is important to focus on the needs of the child and family to develop plans that will be practical, useful, and sustainable (Anderson et al., 2001; Drotar et al., 2001). Mental health clinicians working in schools are in an optimal position to foster adjustment, achievement, and acceptance for children with chronic medical conditions. One way is to provide teacher education and support. This will improve their confidence working in areas in which they have little or no experience. Maintaining a collaborative relationship with medical providers and encouraging teamwork between educators and the medical team, will enhance day-to-day and emergency medical planning for the child. Developing behavioral plans and providing counseling to improve adherence to medication and dietary regimens also will facilitate the child’s functioning and adjustment at school. Assessing the child’s progress in meeting academic and social milestones may help ensure that the child is progressing at a steady rate. Supporting parents, so they do not overprotect their child, also may facilitate the child’s progress in adjusting to being at school and in making friends (Haslam and Valletutti, 1996; Mescon and Honig, 1995; Sexson and Madan-Swain, 1995; Thies, 1999). In summary, we have addressed some important avenues for promoting adjustment to school (e.g., school support and reentry programs), achievement in the classroom, and social acceptance for children with chronic medical conditions (Thies and McAllister, 2001). School staff, parents, and members of the medical team, need to lobby at local, state, and national levels for increased funding and guidelines for special health care plans and comprehensive school-based services for youth with chronic conditions (Drotar et al., 2001). Hence, in this age of reduced availability of medical personnel, increasing pressure for reducing the medical costs of care, and increasing demands on schools and families, SMH clinicians can play an important role in facilitating the psychosocial and academic development of children with chronic medical conditions. REFERENCES Anderson, B., Loughlin, C., Goldberg, E., and Laffel, L. (2001). Comprehensive, familyfocused outpatient care for very young children living with chronic disease: Lessons learned from a program in pediatric diabetes. Child. Serv. Soc. Policy, Res., Pract. 4: 235– 250. Barrett, J. T. (2000). A school-based care management service for children with special needs. Fam. Community Health 23: 36–42. Bowman, J., and Associates, Administration for Children, Youth, and Families (1998). Caring for Children With Chronic Conditions: Training Guides for the Head Start Learning

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Community (DHHS Publication No. BBB23445), U.S. Government Printing Office, Washington, DC. British Columbia Department of Education (1995). Awareness of Chronic Health Conditions: What the Teacher Needs to Know, Ministry of Education, Victoria, British Columbia. Brown, R. T. (1995). Introduction of the Special Series: Cognitive and academic issues related to chronic illness. Sch. Psychol. Quarterly, 10: 271–273. Center, Y., and Ward, J. (1984). Integration of mildly handicapped cerebral palsied children into regular schools. Except. Child. 31: 104–113. da Costa, I. G., Rapoff, M. A., Lemanek, K., and Goldstein, G. L. (1997). Improving adherence to medication regimes for children with asthma and its effect on clinical outcome. J. Appl. Behav. Anal. 30: 687–691. Drotar, D. (2001). Promoting comprehensive care for children with chronic health conditions and their families: Introduction to the special issue. Child. Serv.: Soc. Policy, Res., Pract. 4: 157–163. Drotar, D., Walders, N., Burgess, E., Nobile, C., Dasari, M., Kahana, S., Miller, V., Schwartz, L., Schaefer, E., and Zebracki, K. (2001). Recommendations to enhance comprehensive care for children with chronic health conditions and their families. Child. Serv. Soc. Policy, Res., Pract. 4: 251–264. Farmer, J. E. and Peterson, L. (1995). Pediatric traumatic brain injury: Promoting successful school reentry. Sch. Psychol. Rev. 24: 230–243. Frieman, B. B., and Settel, J. (1994). What the classroom teacher needs to know about children with chronic medical problems. Child. Educ. 70: 196–201. Gordon, P. A., Feldman, D., and Ballard, E. M. (1998). Collaboration between rehabilitation psychologists and special educators when working with children with chronic health/disabling conditions. Phys. Disabil.: Educ. Relat. Serv. 17: 63–76. Graetz, B., and Shute, R. (1995). Assessment of peer relationships in children with asthma. J. Pediatr. Psychol. 20: 205–216. Haslam, R. H. A., and Valletutti, P. J. (1996). Medical Problems in the Classroom: The Teacher’s Role in Diagnosis and Management, 3rd edn., Pro-Ed, Austin, TX. Hobbs, N., Perrin, J. M., and Ireys, H. T. (1985). Chronically Ill Children and Their Families, Jossey-Bass, San Francisco. Johnson, B. H., Jeppson, E. S., and Redburn, L. (1992). Caring for Children and Families: Guidelines for Hospitals, 1st edn., Association for the Care of Children’s Health, Washington, DC. Johnson, M. P., Lubker, B. B., and Fowler, M. G. (1988). Teacher needs assessment for the educational management of children with chronic illnesses. J. Sch. Health 58: 232– 235. Larson, G. (1988). Managing the School Age Child With a Chronic Health Condition: A Practical Guide for Schools, Families, and Organizations, Sunrise River Press, North Branch, MN. Lynch, E. W., Lewis, R. B., and Murphy, D. S. (1992). Educational services for children with chronic illnesses: Perspectives of educators and families. Except. Child. 59: 210–220. Madan-Swain, A., Frederick, L. D., and Wallander, J. L. (1999). Returning to school after a serious illness or injury. In Brown, R. T. (ed.), Cognitive Aspects of Chronic Illness in Children, Guilford Press, New York, pp. 312–332. Mescon, J. A. W., and Honig, A. S. (1995). Parents, teachers and medical personnel: Helping children with chronic illness. Early Child Dev. Care 111: 107–129. Nassau, J. H., and Drotar, D. (1997). Social competence among children with central nervous system-related chronic health conditions: A review. J. Pediatr. Psychol. 22: 771– 793. National Institute on Disability and Rehabilitation Research (1998). Guidelines and Standards for Children with Special Health Needs: Bibliography of Materials From the NCEMCH Library. (NCEMCH No. EDD00064), National Center for Education in Maternal and Child Health, Arlington, VA. Patterson, J. M., and Gerber, G. (1991). Preventing mental health problems in children with chronic illness or disability. Child. Health Care 20: 150–161.

15:50




PP1040-jodd-475734

November 21, 2003

15

Perry, J. D., and Flanagan, W. K. (1986). Pediatric psychology: Applications to the schools needs of children with health disorders. Tech. J. Remedial Educ. Couns. 2: 333–340. Phelps, L., and Landau, S. (1995). Health-related issues in early childhood (Special issue). Sch. Psychol. Rev. 24(2): 129–130. Prevatt, F. F., Heffer, R. W., and Lowe, P. A. (2000). A review of school reintegration programs for children with cancer. J. Sch. Psychol. 38: 447–467. Rodrigue, J. R., Geffken, G. R., and Streisand, R. M. (2000). Child Health Assessment: A Handbook of Measurement Techniques, Allyn & Bacon, Needham Heights, MA. Rolland, J. S. (1987). Chronic illness and the life cycle: A conceptual framework. Fam. Process 26: 203–221. Rynard, D. W., Chambers, A., Klinck, A. M., and Gray, J. D. (1998). School support programs for chronically ill children: Evaluating adjustment of children with cancer at school. Child. Health Care 27: 31–46. Sachs, M. B. (1980). Helping the child with cancer go back to school. J. Sch. Health 50: 328–331. Schuman, W. B., and La Greca, A. M. (1999). Social correlates of chronic illness. In Brown, R.T. (ed.), Cognitive Aspects of Chronic Illness in Children, Guilford Press, New York, pp. 289–311. Sexson, S., and Madan-Swain, A. (1995). The chronically ill child in school. Sch. Psychol. Q. 10: 359–368. Stein, R. E. K. (1986). Promoting communication between health care providers and educators of chronically ill children. Top. Early Child. Spec. Educ. 5: 70–81. Stein, R. E. K., Bauman, L. J., Westbrook, L. E., Coupey, S. M., & Ireys, H. T. (1993). Framework for identifying children who have chronic conditions: The case for a new definition. Journal of Pediatrics, 122: 342–347. Stein, R. E. K., and Johnson-Silver, E. (1999). Operationalizing a conceptually based noncategorical definition: A first look at U.S. children with chronic conditions. Arch. Pediatr. Adolesc. Med. 153: 68–74. Stein, R. E. K., Westbrook, L. E., and Bauman, L. J. (1997). The Questionnaire for Indentifying Children with Chronic Conditions: A measure based on a noncategorical approach. Pediatrics 99: 513–521. Tarnowski, K. J., and Brown, R. T. (1995). Psychological aspects of pediatric disorders. In Hersen M., and Ammerman, R. J. (eds.), Advanced Abnormal Psychology, Erlbaum, Hillsdale, NJ, pp. 393–410. Thies, K. M. (1999). Identifying the educational implications of chronic illness in school children. J. Sch. Health 69: 392–397. Thies, K. M., and McAllister, J. M. (2001). The Health Education and Leadership Project: A school initiative for children and adolescents with chronic health conditions. J. Sch. Health 71: 167–172. U.S. Department of Health and Human Services (1987). Surgeon General’s Report on Children With Special Health Care Needs (DHHS Publication No. HRS/DMC87-2), U.S. Department of Health and Human Services, Rockville, MD. Urbano, M. T. (1992). Preschool Children With Special Health Care Needs, Singular Publishing Group, Inc, San Diego, CA. Walker, L. S., and Greene, J. W. (1991). The Functional Disability Inventory: Measuring a neglected dimension of child health status. J. Pediatr. Psychol. 16: 39–58. Weitzman, M., Klein-Walker, D., and Gortmaker, S. (1986). Chronic illness, psychosocial problems, and school absences: Results of a survey of one county. Clin. Pediatr. 25: 137–141. Worchel-Prevatt, F. F., Heffer, R. W., Prevatt, B. C., Miner, J., Young-Saleme, T., Horgan, D., Lopez, M., Rae, W. A., and Frankel, L. (1998). A school reentry program for chronically ill children. J. Sch. Psychol. 36: 261–279.

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