School reentry for students with a chronic illness: a role for professional school counselors.Approximately 20% of all children have a chronic illness, and about one-third of that number experience consequences severe enough to interfere with school functioning and performance. This article describes challenges that schools face in their efforts to serve students with chronic illness and their families, and it suggests the role that professional school counselors A school counselor is a counselor and educator who works in schools, and have historically been referred to as "guidance counselors" or "educational counselors," although "Professional School Counselor" is now the preferred term. can play in facilitating support. ********** Although estimates of the number of children dealing with chronic illnesses vary, it is generally agreed that 20% of all children have a chronic illness and approximately one-third of that number experience consequences severe enough to interfere with school functioning and performance (Graft & Ault, 1993; Newacheck & Halfon, 1998; Thompson & Gustafson, 1996). A chronic illness is defined as an illness that has no cure but is not necessarily terminal (Huegel, 1998), requires medical interventions over time, and can result in debilitating de·bil·i·tat·ing adj. Causing a loss of strength or energy. Debilitating Weakening, or reducing the strength of. Mentioned in: Stress Reduction consequences (Thompson & Gustafson). Approximately half of all children diagnosed with a chronic illness are absent from school more frequently, sometimes for extended periods of time, and therefore may require educational adaptations (Geist, Grdisa, & Otley, 2003; Lehr, 1990; Lynch, Lewis, & Murphy, 1992; Shiu, 2001). Making a successful transition back to school is associated with more positive long-term outcomes (Bessel, 2001; Houlahan, 1991; Kagen-Goodheart, 1977; Prevatt, Heifer HEIFER. A young cow, which has not had a calf. A beast of this kind two years and a half old, was held to be improperly described in the indictment as a cow. 2 East, P. C. 616; 1 Leach, 105. , & Lowe, 2000). The purpose of this article is to identify the challenges that schools face in their efforts to help students with chronic illness return to school, and to suggest the role that professional school counselors can play in facilitating support. PREVALENCE OF CHRONIC ILLNESS It is estimated that 4.4 million children, or 6.5% of all under the age of 18, have a chronic condition severe enough to interfere with participation in normal activities such as school (Newacheck & Halfon, 1998), and 1 million children are dealing with a chronic illness that limits their ability to attend school on a regular basis (Thompson & Gustafson, 1996). Phelps (1998) identified 96 diseases diagnosed in children and adolescents that can result in psycho-educational consequences or require a special education intervention. The most common childhood chronic illnesses are asthma, allergic disorders, digestive disorders, central nervous system disorders Nervous system disorders A satisfactory classification of diseases of the nervous system should include not only the type of reaction (congenital malformation, infection, trauma, neoplasm, vascular diseases, and degenerative, metabolic, toxic, or deficiency , and seizure disorders Seizure Disorder Definition A seizure is a sudden disruption of the brain's normal electrical activity accompanied by altered consciousness and/or other neurological and behavioral manifestations. such as epilepsy epilepsy, a chronic disorder of cerebral function characterized by periodic convulsive seizures. There are many conditions that have epileptic seizures. Sudden discharge of excess electrical activity, which can be either generalized (involving many areas of cells in (Newacheck & Halfon). See Table 1 for a listing of the most common chronic illnesses and an estimation of the number of school-age children affected by these illnesses (Huegel, 1998; Phelps; Thompson & Gustafson). PSYCHOSOCIAL psychosocial /psy·cho·so·cial/ (si?ko-so´shul) pertaining to or involving both psychic and social aspects. psy·cho·so·cial adj. Involving aspects of both social and psychological behavior. AND EDUCATIONAL CONSEQUENCES OF CHRONIC ILLNESS Many children with a chronic illness manage their disease and suffer few psychosocial or educational consequences. However, one-third of all children with a chronic illness do have difficulty dealing with the demands of their illness (Armstrong & Horn, 1995; Boekaerts & Roder, 1999; Fasciano, 1996; Geist et al., 2003; Sexson & Madan-Swain, 1993; Thompson & Gustafson, 1996). Children with chronic illness are absent more than healthy children (Fowler, Johnson, & Atkinson, 1985). For example, in the first year of treatment for leukemia leukemia (l kē`mēə), cancerous disorder of the blood-forming tissues (bone marrow, lymphatics, liver, spleen) characterized by excessive production of immature or mature , it is estimated that students will miss 40 days of school, and
they will have inconsistent attendance during the following 3 years
(Prevatt et al., 2000). In general, students with a chronic illness are
absent 16 days as compared to 5.7 days absent for healthy children
(Fowler et al., 1985). Absenteeism ab·sen·tee·ism n. 1. Habitual failure to appear, especially for work or other regular duty. 2. The rate of occurrence of habitual absence from work or duty. varies according to according to prep. 1. As stated or indicated by; on the authority of: according to historians. 2. In keeping with: according to instructions. 3. illness, with asthma accounting for the highest number or days absent (Thompson & Gustafson). The longer that children are away from school, the more difficult the transition back to school. Prolonged absences contribute to a sense of learned helplessness learned helplessness In psychology, a mental state in which a laboratory subject forced to bear aversive stimuli becomes unable or unwilling to avoid subsequent applications, even if they are “escapable,” presumably through having learned that situational and despair, and they interfere with coping and the rehabilitative re·ha·bil·i·tate tr.v. re·ha·bil·i·tat·ed, re·ha·bil·i·tat·ing, re·ha·bil·i·tates 1. To restore to good health or useful life, as through therapy and education. 2. process (Houlahan, 1991). Researchers have concluded that chronic illness has a direct impact on school achievement. Theis (1999) reported that 45% of students with chronic illness report falling behind in their schoolwork, often contributing to negative feelings toward school. At the high school level, 35% of students identified as "other-health impaired" had failing grades. Brown and Madan-Swain (1993) reviewed the literature concerning the impact of leukemia, the most common childhood cancer, and found a high incidence of neurocognitive deficits associated with radiation treatment. The deficits were reflected in short-term memory short-term memory n. Abbr. STM The phase of the memory process in which stimuli that have been recognized and registered are stored briefly. impairment, distractibility, motor speed, and perception, resulting in more special education placement and lower achievement and performance scores on math and reading tests as compared to healthy peers (Peckham, Meadows, Bartel, & Marrero, 1988; Taylor, Albo, Phelbus, Sachs, & Bierl, 1987). Students with chronic illness are more likely to have behavior problems including internalizing problems such as depression, somatic somatic /so·mat·ic/ (so-mat´ik) 1. pertaining to or characteristic of the soma or body. 2. pertaining to the body wall in contrast to the viscera. so·mat·ic adj. complaints, social withdrawal, and high anxiety (Boekaerts & Roder, 1999). Students with a chronic illness do seem to be at greater risk for social isolation related to peer misunderstanding about the disease. RETURNING TO SCHOOL Returning to school is a critical factor in the effort to address educational and psychosocial needs of the student with chronic illness (Brown & Madan-Swain, 1993; Graff & Ault, 1993; Houlahan, 1991). Studies have demonstrated the benefits to the child when schools, families, and hospital teams work together to facilitate a return to school as soon as possible (Katz & Varni, 1993; Katz, Rubenstein, Hubert, & Blew, 1988; Prevatt et al., 2000; Spinetta & Deasy-Spinetta, 1981). From a psychosocial perspective, returning to school as soon as possible after the diagnosis of a chronic illness represents a return to normalcy nor·mal·cy n. Normality. Noun 1. normalcy - being within certain limits that define the range of normal functioning normality (Sexson & Madan-Swain, 1993). The Professional School Counselor's Current Role The role that professional school counselors should play in supporting students with chronic illness and facilitating school return is unclear. In 2000, the author of this article surveyed 250 school counselors in a large, urban district (Kaffenberger, Edstrom, Hardison, & Perdu per·du or per·due n. Obsolete A soldier sent on an especially dangerous mission. [From French sentinelle perdue, forward sentry : sentinelle, sentinel + , 2002). School counselors stated that they provided a wide range of services to children with illness and their families, such as collecting homework, coordinating 504 plans, helping the teacher understand the nature of the student's illness, working with the peers of the student with chronic illness, negotiating credit for missed course work, and meeting with the parents, administrators, and teachers. But 71% of elementary school elementary school: see school. counselors and 83% of secondary school counselors said they felt unprepared to provide these services. Most said they scrambled to put together services in the days before the student's return to school. When asked whether they felt the need for training in this area, 75% of elementary school counselors and 83% of secondary school counselors said the), would welcome training and support. Given the central role that professional school counselors play in schools, as well as their counseling and consultation training (Fasciano, 1996) and knowledge of community resources, counselors are in an ideal position to improve school reentry reentry n. taking back possession and going into real property which one owns, particularly when a tenant has failed to pay rent or has abandoned the property, or possession has been restored to the owner by judgment in an unlawful detainer lawsuit. services for students with chronic illness. However, barriers interfere with the school counselor's involvement in the school reentry process. These barriers also explain why the needs of students with chronic illness and their families are not adequately met. Barriers to School Reentry Making the transition back to school is a complex, many-phased process that requires individualized in·di·vid·u·al·ize tr.v. in·di·vid·u·al·ized, in·di·vid·u·al·iz·ing, in·di·vid·u·al·iz·es 1. To give individuality to. 2. To consider or treat individually; particularize. 3. services for each student (Fottland, 2000; Prevatt et al., 2000). The barriers and challenges to school reentry facing the three groups of stakeholders Stakeholders All parties that have an interest, financial or otherwise, in a firm-stockholders, creditors, bondholders, employees, customers, management, the community, and the government. (families, medical teams, and school personnel) include a lack of communication, a lack of information and training, and unsupportive school system policies (Fasciano, 1996; Gaynon, 1993). A lack of communication among the three groups is the greatest barrier to smooth school reentry (Armstrong & Horn, 1995; Gaynon, 1993; Prevatt et al., 2000). Families, devastated dev·as·tate tr.v. dev·as·tat·ed, dev·as·tat·ing, dev·as·tates 1. To lay waste; destroy. 2. To overwhelm; confound; stun: was devastated by the rude remark. by the news that their child has been diagnosed with a life-threatening disease, reorganize re·or·gan·ize v. re·or·gan·ized, re·or·gan·iz·ing, re·or·gan·iz·es v.tr. To organize again or anew. v.intr. To undergo or effect changes in organization. in order to respond to the crisis and often limit contact with outsiders (Kaffenberger, 1999; Martin, Brady, & Kotarba, 1992). They delay contact with the school, mistakenly believing that school issues are no longer a priority or lacking the knowledge of how to access school resources (Gaynon; Peckham, 1993). Without a vehicle of communication, schools are unsure of their role and how to proceed. A lack of information is another barrier to school reentry. Families and medical teams do not have specific information concerning the services that schools can provide. Schools lack information concerning the nature of the diagnosis and the medical needs of the child returning to school (Baskin, Saylor, William, Finch, & Carek, 1983; Henning & Fritz, 1983; Pallmeyer et al., 1986). Teachers report that they are unsure about how to handle classmates' questions or the teasing teasing the act of parading a male before a female to see if she displays estrus, and is therefore in a state where mating is likely to be fertile. that may occur as a result of a student's altered appearance after treatment, or what the medical needs of the child will require of them (Baskin et al.; Henning & Fritz). The school staff's previous experiences with cancer or serious illness, in their own lives or in the school community, can impact their response to sick children and families. A school system's regulations and policies concerning access to homebound home·bound adj. Restricted or confined to home, as of an invalid. instruction and special education and Section 504 services are also barriers to school reentry (Prevatt et al., 2000). Qualifying for homebound instructional services is often determined by policies that require that students are absent from school for 30 days before services can be authorized. Once students have qualified for homebound instruction they are not permitted to attend school, even to visit. Students with a chronic illness, such as cancer, diabetes, or asthma, need more flexible homebound services that would support them during the treatment and recovery period and would allow them to participate in school, as their health permits. School personnel are sometimes slow to respond to the need for special education or 504 services for children dealing with short-and long-term consequences of their treatment, identifying low motivation and inconsistent attendance as a behavior problem rather than a result of the illness (Armstrong & Horn, 1995). Cancer treatments--surgery, radiation, and chemotherapy--have been associated with a higher incidence of learning disabilities and physical disabilities that impact school performance and may require special education services (Armstrong & Horn; Douglas, 1997; Sexson & Madan-Swain, 1993). Federal legislation, Public Law 94-142 and the Individuals with Disabilities Education Act Some statements may be disputed, incorrect, , biased or otherwise objectionable. Health and Human Services, HHS , 2004), guarantees an appropriate education for all people, including students with chronic illness. Some students with chronic illness will qualify for special education services, and some may qualify for 504 services. Section 504 of the Rehabilitation rehabilitation: see physical therapy. Act of 1973 (U.S. Department of Health and Human Services) offers protection for students who have a physical or mental disability that limits a major activity. Section 504 requires that modifications to the learning environment be made to give the child access to educational opportunity. Examples of modifications for a child with a chronic illness might include a shortened day, modified and/or homebound instruction, or the opportunity to rest in the school clinic. Model School Reentry Programs Model school reentry programs that help children make the transition back to school have been described in the literature (Fasciano, 1996; Houlahan, 1991; Katz et al., 1988; Katz, Varni, Rubenstein, Blew, & Hubert, 1992; Prevatt et al., 2000; Sachs, 1980; Shields, Heron, Rubenstein, & Katz, 1995). Although model programs have been described, few programs exist that facilitate school reentry for students with chronic illness and improve communication between schools and medical teams. While there is agreement that a comprehensive school reentry program is ideal, staffing issues, funding, and a lack of supporting research data about the effectiveness of existing programs limit the number of programs being implemented. Prevatt et al. (2000) reviewed 16 comprehensive school reintegration reintegration /re·in·te·gra·tion/ (-in-te-gra´shun) 1. biological integration after a state of disruption. 2. restoration of harmonious mental function after disintegration of the personality in mental illness. programs for students with cancer described in the literature, and they concluded that the components of an effective school reintegration program share six features. Model programs * identify a school-based or medical team coordinator of services, * provide direct services to the student, * consult with the family, * educate school personnel, * provide information to classmates Classmates can refer to either:
* involve the medical team. Central to the success of model programs is the identification of a liaison who coordinates the school reentry process (Shields et al., 1995). The liaison oversees the first phases of the transition process by conducting individual interviews or assessments with the family and the student. It is important for the liaison to have access to the family, the student, the medical team, and the school. The liaison meets with the parents to determine how they want information transmitted, and to assess resources and family support available. The liaison begins the school reentry process by providing information to the family about school services http://commons.wikimedia.org/wiki/Image:Schools_Collection_May_2007_2.JPGSchool Services are a business unit of the National Library of New Zealand (Te Puna Mātauranga o Aotearoa). They provide curriculum and advisory services to support New Zealand schools. available, the importance of involving the school from the time of diagnosis, and the school reentry process. The liaison works with the school to educate and inform school personnel. A workshop for teachers and administrators is recommended as the best vehicle for sensitizing sen·si·tize v. sen·si·tized, sen·si·tiz·ing, sen·si·tiz·es v.tr. 1. To make sensitive: "The polarity principle . . . school personnel to the unique needs of a child with cancer, and how to handle the classroom response to the sick child (Baskin et al., 1983). The liaison also is called in to work directly with classrooms and peers (Benner & Marlow, 1991). Finally, the liaison keeps the lines of communication "Lines of Communication" is an episode from the fourth season of the science-fiction television series Babylon 5. Synopsis Franklin and Marcus attempt to persuade the Mars resistance to assist Sheridan in opposing President Clark. open, passing along updated information and planning for school reentry. A ROLE FOR PROFESSIONAL SCHOOL COUNSELORS The needs of students with chronic illness are not being met by current practices (Lynch et al., 1992; Prevatt et al., 2000; Shiu, 2001). Typically the transition process is put together in a piecemeal fashion, with families struggling to understand the school regulations, unsure of what their child will need and what the future holds. Schools scramble to find information about the diagnosis, the needs of children and ramifies, and available resources. Well-meaning professional school counselors and school personnel, lacking clarity about their roles, knowledge about the illness and available resources, and training, feel unprepared to meet the needs of students and families. Professional school counselors, by virtue of their training and knowledge of social, emotional, and academic needs of students, are ideally suited to play a greater role in school reentry for students with chronic illness. Professional school counselors, however, will not be prepared to assume this role without training and the support of supervisors and school administration. STRATEGIES FOR SCHOOL REENTRY SERVICES Professional school counselors are positioned to coordinate a range of support services support services Psychology Non-health care-related ancillary services–eg, transportation, financial aid, support groups, homemaker services, respite services, and other services to the family, the student with chronic illness, the siblings, and the school staff throughout the period of diagnosis, treatment, aftercare af·ter·care n. Follow-up care provided after a medical procedure or treatment program. aftercare the care and treatment of a convalescent patient, especially one that has undergone surgery. , and school reentry. Providing support to students and families will need to be negotiated to respond to the unique qualities of each illness and the particular needs of each student and family. The school counselor's involvement with the student, family, and school will be especially important as the uncertainties of the initial diagnosis and treatment unfold. The following strategies are offered to guide school counselors' involvement in the school reentry process (Graft & Auk, 1993; Houlahan, 1991; Katz et al., 1988; Prevatt et al., 2000). Suggested Strategies for Working with the Family School counselors should be encouraged to contact the parents as soon as possible after learning of the diagnosis. Ideally, the counselor should offer to meet with the parents in person. During the initial crisis period, parents may not know what they need or how to proceed. If the school counselor can make some useful suggestions, provide information about school services, or structure a course of action, it is likely that the parents will respond positively (Kaffenberger, 2004; Lynch et al., 1992). During the first contact or meeting, the counselor should begin to negotiate a role with the family, asking how the family wants information among school, home, and hospital to be shared. School counselors may be asked for information about community resources, or to coordinate support from school, church, or neighbors. During this meeting the school counselor can assess the level of support that the family will need and can expect to receive from extended family and the community. A meeting with school personnel and the family should be scheduled as soon as possible after the diagnosis. The purpose of this meeting is to share information about the diagnosis, the needs of the child, the support the school will provide, and the way information will be shared. School personnel who should attend this meeting could include the school administrator, professional school counselor, classroom teachers, physical education teacher, school nurse, and social worker. If the student will be out of school for extended periods of time, homebound services should be requested and plans for school reentry should begin. Parents will need to know whom they should contact with updated information. How the illness will be discussed with other school personnel and students also should be discussed at this meeting. One of the most important roles for school counselors involves preparing for the student's return to school. Planning should begin from the time of diagnosis (Kaffenberger, 2004). Counselors can provide the parents with information about homebound instruction, policies, tutors, the possible need for special education and 504 services, and preparation for school reentry. Parents may be concerned about teasing, catching up on missed schoolwork, and how the teacher will respond to their child (Baskin et al., 1983; Benner & Marlow, 1991). These concerns can be addressed if the dialogue between home and school continues throughout the periods of school absence. School counselors who have played an active role from the beginning will be in a position to provide support to the family should the student's health deteriorate or if the child should die. The counselor's previous preparation in working with families dealing with the death of a child and grief counseling
Loss and grief are inevitable at some time in everyone's life [1] and at any age[2]. with the family, siblings, and school community will prove invaluable. Suggested Strategies for Working with the Student with Chronic Illness The school counselor also can provide direct support to the student with chronic illness (Ross, 1984). With the permission of the parents, the school counselor can contact a member of the student's medical team in order to receive information about the treatment, post-treatment, and recovery period. The school counselor should work with the student and the family to determine what to expect when the student returns to school, and what would be helpful through the treatment and recovery period. Some students want as much contact as possible, including cards, phone calls, and visits. Videotapes of the class, e-mail, and phone calls can keep the student in touch with school and peers. Other children, especially some adolescents, prefer to limit contact with the school and to receive support from close friends and only a few teachers. Individual differences need to be respected. School counselors also may provide counseling as needed as needed prn. See prn order. to support students with chronic illness as they reenter re·en·ter also re-en·ter v. re·en·tered, re·en·ter·ing, re·en·ters v.tr. 1. To enter or come in to again. 2. To record again on a list or ledger. v.intr. school. Families differ greatly in how much school involvement they want and how much information they want shared with the school. Professional school counselors will need to be sensitive to cultural and religious differences concerning the meaning of illness, and how this will impact the school's response and support. Suggested Strategies for Working with the Siblings School counselors are in a unique position to support the siblings of the child with chronic illness (Wallinga & Reed, 1990). Siblings are often the forgotten members of the family (McKeever, 1983; Thompson & Gustafson, 1996). Lacking confidence about how to help siblings, school personnel often miss the opportunity to support them. While family resources rally around the sick child, siblings arc often left to fend for Verb 1. fend for - argue or speak in defense of; "She supported the motion to strike" defend, support argue, reason - present reasons and arguments themselves (Kaffenberger, 1999). Well-meaning neighbors or relatives are given responsibility for caring for siblings. At a time of family crisis and uncertainty, siblings' questions often go unanswered and the emotional support of parents is missing. Years after the family crisis period, siblings continue to report their sadness and resentment about the lack of support they received (Kaffenberger). School counselors may be in the best position to be an advocate for siblings. They can provide siblings with the time and support necessary to express feelings, tell their story, and cope (Wallinga & Reed, 1990). They can help the school community understand the needs of the sibling and provide support. School counselors also can help parents understand the short-and long-term impact of the illness experience on siblings. School counselors may be able to suggest ways to involve healthy siblings in the care and support of their sick brother or sister. Support groups at school or in the community also can be effective in supporting siblings (Johnson, 1997). The most important role the counselor can play is giving siblings a safe place to express their needs and talk about their experiences (Wallinga & Reed). Johnson identified the following goals for counseling siblings: (a) validate the healthy children's feelings about their sick brother or sister, (b) normalize normalize to convert a set of data by, for example, converting them to logarithms or reciprocals so that their previous non-normal distribution is converted to a normal one. the experience, (c) provide direct information about the illness and treatment, (d) facilitate open communication among family members, (e) encourage involvement with their sick brother or sister, (f) identity, positive aspects of the experience, and (g) cultivate age-appropriate coping strategies The German Freudian psychoanalyst Karen Horney defined four so-called coping strategies to define interpersonal relations, one describing psychologically healthy individuals, the others describing neurotic states. (p. 421). Suggested Strategies for Working with the School Community The school counselor can help school administrators, teachers, and students understand their role in supporting the child, family, and siblings. School counselors may be asked to conduct or arrange classroom workshops to sensitize sen·si·tize v. To make hypersensitive or reactive to an antigen, such as pollen, especially by repeated exposure. peers to the needs of the sick student. Peers want to know about the illness (Kaffenberger, 2004). They want to know if the illness is contagious, whether the child will die, and what it's like to have the illness (Peckham, 1993; Treiber, Schramm, & Mabe, 1986). Even a brief workshop or presentation has a significant impact on classmates' knowledge, decreases worries, and increases their willingness to interact with the student with chronic illness (Benner & Marlow, 1991; Treiber et al.). When the student with chronic illness is in middle or high school, it is recommended that the workshop be conducted either in a science class, to emphasize the medical components of the illness, or in homeroom home·room n. A school classroom to which a group of pupils of the same grade are required to report each day. Noun 1. homeroom , to emphasize the social-emotional impact of the illness experience. Adolescent peers are more likely than younger children to personalize per·son·al·ize tr.v. per·son·al·ized, per·son·al·iz·ing, per·son·al·iz·es 1. To take (a general remark or characterization) in a personal manner. 2. To attribute human or personal qualities to; personify. the experience and, therefore, should be encouraged to process those feelings. School counselors also are encouraged to provide a workshop for school faculty and staff (Kaffenberger, 2004). Although the time commitment involved in organizing such a workshop is extensive, the payoff is worthwhile. In one study (Baskin et al., 1983), teachers reported that participating in a workshop provided needed information about the medical and emotional impact of the illness, resulted in normalization In relational database management, a process that breaks down data into record groups for efficient processing. There are six stages. By the third stage (third normal form), data are identified only by the key field in their record. of teacher behaviors, and had a genuine impact on how teachers treat students with cancer (Prevatt et al., 2000). Preparing for a Proactive Role What can professional school counselors do to prepare for the near certainty that a student in their school will be diagnosed with a serious chronic illness? School counselors can begin gathering information about resources in their schools and communities. They should begin by familiarizing fa·mil·iar·ize tr.v. fa·mil·iar·ized, fa·mil·iar·iz·ing, fa·mil·iar·iz·es 1. To make known, recognized, or familiar. 2. To make acquainted with. themselves with school district policies, such as the homebound instruction procedures, and how to access these services. School counselors may be asked to link homebound instructors with classroom teachers in order to make instruction as relevant as possible. School counselors also need to be fully aware of the special education and 504 regulations available to students with chronic illness. School counselors may need to help parents understand what services are available and how to access those resources. As mentioned previously, school counselors surveyed by this author stated that they felt unprepared for the role they are asked to play in providing services for students with chronic illness (Kaffenberger et al., 2002). They responded that they need information and training. Coordinators of school counseling programs at the district level should be encouraged to develop training procedures and to coordinate services with administrators, school social workers, and school nurses. School counselors also should begin developing their knowledge of chronic illnesses and gather resources that will be available to school personnel, families, siblings, and students at the school. There are many books and Web sites (see Appendix A) specifically for students, families, and schools that provide resources, information, and support. Finally, professional school counselors need to advocate for the academic needs of students with chronic illness by educating school leadership concerning the need for program development, expanded services, and training. CONCLUSION Professional school counselors are in a unique position to coordinate school support services for students with chronic illness. Given the growing number of students returning to school who have chronic illnesses, and their unique needs for services, school counselors have the responsibility to be prepared for a role in the school reentry process. School counselors are encouraged to make early contact with the family and to negotiate how the student and family will be served, what services will be needed, and how the school will communicate with the family. In order to assume this role, and prepare for it, school counselors will need training and access to information and resources. Additionally; school system leadership will need to mandate and underscore The underscore character (_) is often used to make file, field and variable names more readable when blank spaces are not allowed. For example, NOVEL_1A.DOC, FIRST_NAME and Start_Routine. (character) underscore - _, ASCII 95. the importance of the professional school counselor's role in the school reentry process. APPENDIX A Resources for Working with Families and School Communities When a Student Has a Chronic Illness Recommended Reading Huegel, K. (1998). Young people and chronic illness: True stories, help, and hope. Minneapolis, MN: Free Spirit Publications. Meyer, D. J., & Vadasy, P. F. (1994). Sibshops: Workshops for siblings of children with special needs. Baltimore: Paul H. Brookes Publishing Co. Singer, A.T.B. (1999). Coping with your child's chronic illness. San Francisco San Francisco (săn frănsĭs`kō), city (1990 pop. 723,959), coextensive with San Francisco co., W Calif., on the tip of a peninsula between the Pacific Ocean and San Francisco Bay, which are connected by the strait known as the Golden : Robert D. Reed Publishers. Recommended Reading for Children Krisher, T. (1992). Kathy's hats: A story of hope. Morton Grove Morton Grove, village (1990 pop. 22,408), Cook co., N of Chicago, NE Ill.; inc. 1895. It has research laboratories and plants that manufacture goods such as pumps, electrical equipment, and cosmetics. , IL: Albert Witman & Company. MacLellan, S. N. (1998).Amanda's gift. Roswell, GA: Health Awareness Communications. Meyer, D. (1997). View from our shoes: Growing up with a brother or sister with special needs. Bethesda, MD: Woodbine woodbine, name for several vines, among them honeysuckle and Virginia creeper. woodbine Any of many species of vines belonging to various flowering-plant families, especially the Virginia creeper (Parthenocissus quinquefolia, family Vitaceae) of House. Mills, J. C. (1992). Little tree: A story for children with serious medical problems. New York New York, state, United States New York, Middle Atlantic state of the United States. It is bordered by Vermont, Massachusetts, Connecticut, and the Atlantic Ocean (E), New Jersey and Pennsylvania (S), Lakes Erie and Ontario and the Canadian province of : Brunner/Mazel, Inc. Saltzman, D. (1995). The jester lost his jingle. Palos Verdes Estates Palos Verdes Estates (păl`əs vûr`dēz), city (1990 pop. 13,512), Los Angeles co., S Calif.; inc. 1939. It is a residential community. , CA: The Jester Co., Inc. Vadasy, P., & Meyer, D. J. (1996). Living with a brother or sister with special needs: A book for siblings. Seattle, WA: University of Washington Press. Online Resources for Information and Support Allergy and Asthma--National Pollen Network. Web site for the education of patients with allergies and asthma. Provides national pollen rate updates, http:// www.allernet.com American Diabetes Association The American Diabetes Association, or the ADA, is an American health organization providing diabetes research, information and advocacy. Founded in 1940, the American Diabetes Association conducts programs in all 50 states and the District of Columbia, reaching hundreds of . 800.342.3483. http:// www.diabetes.org/ American Heart Association American Heart Association (AHA), n.pr a national voluntary health agency that has the goal of increasing public and medical awareness of cardiovascular diseases and stroke, and thereby reducing the number of associated deaths and disabilities. . 800.AHA.USA1. Link pertaining per·tain intr.v. per·tained, per·tain·ing, per·tains 1. To have reference; relate: evidence that pertains to the accident. 2. to children, https://www.americanheart.org/presenter. jhtml?identifier=1477 Arthritis Foundation This article or section needs sources or references that appear in reliable, third-party publications. Alone, primary sources and sources affiliated with the subject of this article are not sufficient for an accurate encyclopedia article. . 404.965.7538. Link pertaining to arthritis in children, teens, and young adults, http:// www.a rthritis.org/communities/juvenile_arthritis/ children_young_adults.asp Association of Online Cancer Resources. Provides list-serves, online support, and related Web sites for children and adults dealing with cancer, http://www.acor.org Band-Aids and Blackboards. This child-friendly Web site was created by a nurse educator A nurse educator is a nurse who teaches and prepares licensed practical nurses (LPN) and registered nurses (RN) for entry into practice positions. Nurse Educators also teach in graduate programs at Master’s and doctoral level which prepare advanced practice nurses, nurse to help children and teens cope with chronic illness and returning to school. http://www.lehman.cuny.edu/faculty/jfleitas/ bandaides/ Brave Kids. Online resources for children with chronic and life-threatening illnesses, http://www.bravekids.org CancerSourceKids. The Association of Pediatric pediatric /pe·di·at·ric/ (pe?de-at´rik) pertaining to the health of children. pe·di·at·ric adj. Of or relating to pediatrics. Oncology Nurses oncology nurse Nursing A nurse specialized in treating and caring for people with cancer Salary $53K + 2% bonus. See Oncology. provides helpful information for kids with cancer and their parents, http://www.cancersourcekids. com Candlelighters Childhood Cancer Foundation Candlelighters Childhood Cancer Foundation Candlelighters website is a charitable organization founded in Washington D.C. in 1970 by parents of children with childhood cancer (originally under the name Candlelighters Foundation). . Provides support for children and families, http://www. candlelighters.org Children's Health Children's Health Definition Children's health encompasses the physical, mental, emotional, and social well-being of children from infancy through adolescence. Information Network. Congenital heart disease congenital heart disease, any defect in the heart present at birth. There is evidence that some congenital heart defects are inherited, but the cause of most cases is unknown. information, resources, and support for families and professionals, http://www.tchin.org Children with Diabetes. For children and families, http:// www.childrenwithdiabetes.com/index_cwd.htm Crohn's and Colitis Foundation of America The Crohn’s & Colitis Foundation of America is a non-profit organization, founded in 1967, whose mission is to cure Crohn’s disease and ulcerative colitis and to improve the quality of life of children and adults affected by these digestive diseases. . 800.932.2423. http://www.ccfa.org Cure Search. The collaborative efforts of the National Childhood Cancer Foundation and the Children's Oncology Group. http://www.curesearch.org/ nccfintro.aspx Cystic Fibrosis Foundation The Cystic Fibrosis Foundation (CFF) is a non-profit organization in the United States established to provide the means to cure and control cystic fibrosis. The Foundation provides information about cystic fibrosis (CF) and finances CF research that aims to improve the . 301.951.4422. http://www.cff.org/ DNA DNA: see nucleic acid. DNA or deoxyribonucleic acid One of two types of nucleic acid (the other is RNA); a complex organic compound found in all living cells and many viruses. It is the chemical substance of genes. Interactive. Genetic disorders The following is a list of genetic disorders and their origins. Beside most disorders is a code that indicates the type of fertilization and the chromosome involved.
v. 1. To cut with a sickle. 2. To deform a red blood cell into an abnormal crescent shape. 3. To assume an abnormal crescent shape. Used of red blood cells. cell, cystic fibrosis cystic fibrosis (sĭs`tĭk fībrō`sĭs), inherited disorder of the exocrine glands (see gland), affecting children and young people; median survival is 25 years in females and 30 years in males. , Tay-Sachs, neurofibromatosis Neurofibromatosis Definition Neurofibromatosis (NF), or von Recklinghausen disease, is a genetic disease in which patients develop multiple soft tumors (neurofibromas). These tumors occur under the skin and throughout the nervous system. , etc.) resources and information, http://vector.cshl.org/ygyh/ mason/ygyh.html?syndrome=hemo Epilepsy Foundation. 800.EFA EFA essential fatty acid. .1000. http://www.efa.org Juvenile Diabetes Research Foundation The Juvenile Diabetes Research Foundation (JDRF) is the leading charitable funder and advocate of type 1 (juvenile) diabetes research worldwide. The mission of JDRF is to find a cure for diabetes and its complications through the support of research. . 800.533.2873. http://www.jdf.org/ Kids With Heart National Association for Children's Heart Disorders. 800.538.5390. http://kidswithheart.org/ Lymphoma & Leukemia Society. 800.955.4572. http:// www.leukemia-lymphoma.org/hm_lls National Mental Health Association. 800.969.6642. http:// www.nmhc.org References Armstrong, F. D., & Horn, M. (1995). Educational issues in childhood cancer. School Psychology Quarterly, 104, 292-304. Baskin, C. H., Saylor, C. F., William, M. F., Finch, A. J., & Carek, D.J. (1983). Helping teachers help children with cancer: A workshop for school personnel. Children's Health Care, 21, 78-83. Benner, A. E., & Marlow, L. S. (1991). The effect of a workshop on childhood cancer on students' knowledge, concerns, and desire to interact with a classmate with cancer. Children's Health Care, 20, 101-107. Bessel, A. G. (2001). Children surviving cancer: Psychosocial adjustment, quality of life, and school experiences. The Council of Exceptional Children, 6, 345-359. Boekaerts, M., & Roder, I. (1999). Stress, coping, and adjustment in children with chronic illness: A review of the literature. Disability and Rehabilitation, 21 (7), 311-337. Brown, R.T., & Madan-Swain, A. (1993). Cognitive, neuropsychological neu·ro·psy·chol·o·gy n. The branch of psychology that deals with the relationship between the nervous system, especially the brain, and cerebral or mental functions such as language, memory, and perception. , and academic sequelae sequelae Clinical medicine The consequences of a particular condition or therapeutic intervention in children with leukemia. Journal of Learning Disabilities, 26, 74-90. Douglas, L. S. (1997). The new IDEA and opportunities for school mental health. Baltimore: Center for School Mental Health Assistance. Fasciano, K. M. (1996). A model of school consultation for children with cancer. Massachusetts School of Professional Psychology. (UMI UMI University Microfilms International UMI United States Minor Outlying Islands (ISO Country code) UMI University of Miami UMI Universal Management Infrastructure (IBM) No. 9629997) Fottland, H. (2000). Childhood cancer and the interplay between illness, self-evaluation and academic experiences. Scandinavian Journal of Educational Research, 44, 253-273. Fowler, M., Johnson, M., & Atkinson, S. (1985). School achievement and absence in children with chronic health conditions. Journal of Pediatrics, 106, 683-687. Gaynon, S. S. (1993).The school's contribution to the quality of life of long-term cancer survivors Cancer survivors are those individuals with cancer of any type, current or past, who are still living. The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as from the time of diagnosis and for the balance of life, a person diagnosed with (Doctoral dissertation, University of Wisconsin, 1993). Dissertation Abstracts International, 55, 02A. Geist, R., Grdisa, V., & Otley, A. (2003). Psychosocial issues in the child with chronic conditions. Best Practice & Research Clinical Gastroenterology gastroenterology Medical specialty dealing with digestion and the digestive system. In the 17th century Jan Baptista van Helmont conducted the first scientific studies in the field; William Beaumont published his own observations in 1833. , 17, 141-152. Graff, J. K., & Ault, M. M. (1993). Guidelines for working with students having special health care needs. Journal of School Health, 68, 335-338. Henning, J., & Fritz, G. K. (1983). School reentry in childhood cancer. Psychosomatics, 24(3), 261-269. Houlahan, K. E. (1991). School reentry program. In Association of Pediatric Ontology ontology: see metaphysics. ontology Theory of being as such. It was originally called “first philosophy” by Aristotle. In the 18th century Christian Wolff contrasted ontology, or general metaphysics, with special metaphysical theories Nurses Conference Proceedings (pp. 70-71). Boston: Children's Hospital A children's hospital is a hospital which offers its services exclusively to children. The number of children's hospitals proliferated in the 20th century, as pediatric medical and surgical specialties separated from internal medicine and adult surgical specialties. . Huegel, K. (1998). Young people and chronic illness: True stories, help, and hope. Minneapolis, MN: Free Spirit Publications. Johnson, L. S. (1997). Developmental strategies for counseling the child whose parent or sibling has cancer. Journal of Counseling & Development, 75(6), 417-427. Kaffenberger, C. J. (1999).The experiences of adolescent cancer survivors and their siblings: The effect on their lives and their relationships (Doctoral dissertation, George Mason University Named after American revolutionary, patriot and founding father George Mason, the university was founded as a branch of the University of Virginia in 1957 and became an independent institution in 1972. , 1999). Dissertation Abstracts International, 60, 03A. Kaffenberger, C. J. (2004). School reentry for students with chronic illness. In B.T. Erford (Ed.), Professional school counseling: A handbook of theories, programs & practices (pp. 681-692). Austin, TX: PRO-ED, Inc. Kaffenberger, C. J., Edstrom, J., Hardison, E., & Perdu, J. (2002). School reintegration for students with chronic illness: A model for training counselors, social workers, and public health nurses. Unpublished manuscript. Kagen-Goodheart, L. (1977). Reentry: Living with childhood cancer. American Journal of Orthopsychiatry or·tho·psy·chi·a·try n. The psychiatric study, treatment, and prevention of emotional and behavioral problems, especially of those that arise during early development. , 47, 651-658. Katz, E. R., Rubenstein, C. L., Hubert, N. C., & Blew, A. (1988). School and social reintegration of children with cancer. Journal of Psychosocial Oncology, 6, 123-140. Katz, E. R., & Varni, J. W. (1993). Social support and social cognitive problem-solving in children newly diagnosed with cancer. Cancer, 71, 3314-3319. Katz, E. R., Varni, J. W., Rubenstein, C. L., Blew, A., & Hubert, N. (1992).Teacher, parent, and child evaluative ratings of a school reintegration intervention for children with newly diagnosed cancer. Children's Health Care, 21, 69-75. Lehr, D. H. (1990). Providing education to students with complex health care needs. Focus on Exceptional Children, 22, 1-10. Lynch, E.W., Lewis, R. B., & Murphy, D. S. (1992). Educational services for children with chronic illnesses: Perspectives of educators and families. Exceptional Children, 59, 210-220. Martin, S. S., Brady, M. P., & Kotarba, J. A. (1992). Families with chronically ill young children: The unsinkable family. Remedial and Special Education, 13, 6-15. McKeever, P. (1983). Siblings of chronically ill children: A literature review with implications for research and practice. American Journal of Orthopsychiatry, 53, 209-218. Newacheck, P.W., & Halfon, N. (1998). Prevalence and impact of disabling dis·a·ble tr.v. dis·a·bled, dis·a·bling, dis·a·bles 1. To deprive of capability or effectiveness, especially to impair the physical abilities of. 2. Law To render legally disqualified. chronic conditions in childhood. American Journal of Public Health The American Journal of Public Health (AJPH) is a peer reviewed monthly journal of the American Public Health Association (APHA). The Journal also regularly publishes authoritative editorials and commentaries and serves as a forum for the analysis of health policy. , 88, 610-617. Pallmeyer, T. P., Saylor, C. F., Treiber, F. A., Eason, L. J., Finch, A. J., & Carek, D. J. (1986). Child Psychiatry child psychiatry Branch of medicine concerned with mental, emotional, and behavioral disorders of childhood. It arose as a separate field in the 1920s, largely because of the pioneering work of Anna Freud. and Human Development, 16, 206-215. Peckham, V. C. (Fall 1993). Children with cancer in the classroom. Teaching Exceptional Children, 27-32. Peckham, V. C., Meadows, A.T., Bartel, N., & Marrero, O. (1988). Educational late effects in long-term survivors of childhood acute lymphocytic leukemia acute lymphocytic leukemia n. See acute lymphoblastic leukemia. acute lymphocytic leukemia Acute lymphoblastic leukemia, ALL A malignant lymphoproliferative process that commonly affects children and young adults . Pediatrics, 81, 127-133. Phelps, L. (1998). Health-related disorders in children and adolescents. Washington, DC: American Psychological Association The American Psychological Association (APA) is a professional organization representing psychology in the US. Description and history The association has around 150,000 members and an annual budget of around $70m. . Prevatt, F. F., Heifer, R.W., & Lowe, P. A. (2000). A review of school reintegration programs for children with cancer. Journal of School Psychology, 38, 447-467. Ross, J. W. (1984). Resolving nonmedical obstacles to successful school reentry for children with cancer. Journal of School Health, 54, 84-86. Sachs, M. B. (1980). Helping the child with cancer go back to school. Journal of School Health, 50, 328-331. Sexson, S. B., & Madan-Swain, A. (1993). School reentry for the child with chronic illness. Journal of Learning Disabilities, 26, 115-125. Shields, J. D., Heron, T. E., Rubenstein, C. L., & Katz, E. R. (1995). The eco-triad model of educational consultation for students with cancer. Education and Treatment of Children, 18, 184-200. Shiu, S. (2001). Issues in the education of students with chronic illness. International Journal of Disability, Development and Education, 48, 269-281. Spinetta, J. J., & Deasy-Spinetta, P. (1981). Living with childhood cancer. St. Louis, MO: C.V. Mosby. Taylor, H. G., Albo, V. C., Phelbus, C. K., Sachs, B. R., & Bierl, P. G. (1987). Post-irradiation treatment outcomes for children with acute lymphocytic leukemia: Clarification of risks. Journal of Pediatric Psychology, 12, 395-411. Theis, K. M. (1999). Identifying the educational implications of chronic illness in school children. Journal of School Health, 69, 392-397. Thompson, R. J., & Gustafson, K. E. (1996). Adaptation to chronic childhood illness. Washington, DC: American Psychological Association. Treiber, F. A., Schramm, L., & Mabe, P. A. (1986). Children's knowledge and concern toward a peer with cancer: A workshop intervention approach. Child Psychiatry and Human Development, 16, 249-260. U.S. Census Bureau Noun 1. Census Bureau - the bureau of the Commerce Department responsible for taking the census; provides demographic information and analyses about the population of the United States Bureau of the Census . (2005). Annual estimates of the population by sex and selected age groups for the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area. : April 1, 2000 to July I, 2003. Retrieved January 13, 2005, from http://www.census.gov/popest/national/asrh/ NC-EST2003/NC-EST2003-02.pdf U.S. Department of Health and Human Services. (2004). Your rights under Section 504 of the Rehabilitation Act. Washington, DC: Author. Retrieved July 9, 2004, from http://www.hhs.gov/ocr/504.html Wallinga, C., & Reed, M. (1990).The elementary school counselor's role with siblings of ill children. Elementary School Guidance & Counseling, 25, 91-97. Carol J. Kaffenberger, Ph.D., is an assistant professor in the Counseling & Development Program, George Mason University, Fairfax, VA. E-mail: ckaffenb@gmu.edu
Table 1. Most Common Chronic Illnesses and Estimated Number of
School-Age Children Affected
Illness Group Estimated Number Prevalence Ratios
of Children of the Illness in
Affected (a) Children (b)
Asthma 5,330,000 10 in 100
Cardiac 533,000 1 in 100
Seizure disorders 266,000 5 in 1,000
Bleeding disorders 67,000 1.25 in 10,000
Childhood cancer 810,000 1 in 660 (c)
Inflammatory bowel disease 186,500 3.5 in 100,000
Juvenile arthritis 53,300 1 in 1,000
Cystic fibrosis 26,600 1 in 2,000
Diabetes 10,700 15-20 in 100,000
Sickle cell anemia 9,000 (d) 1 in 375
(African Americans)
Estimated total number of 7,292,100
children for 10 illnesses:
(a) Estimated children affected is calculated using prevalence ratios
and the U.S. Census Bureau population of school-age children in the
United States, July 1, 2003. U.S. Census Bureau figure: 53,274,227
(U.S. Census Bureau, 2005).
(b) Prevalence ratios from Health-Related Disorders in Children and
Adolescents (Phelps, 1998).
(c) Prevalence ratio from Adaptation to Chronic Childhood Illness
(Thompson & Gustafson, 1996).
(d) There are 50,000 sickle cell cases reported in the United States
(Phelps, 1998). The number of affected children was calculated
assuming an even distribution of disease among age groups and African
American school-age children as a proportion of school-age children
in the total population.
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