Running head: SCHOOL REINTEGRATION AND PEDIATRIC PATIENTS UNIVERSITY OF LA VERNE LA VERNE, CALIFORNIA

Transcription

1 School Reintegration and Pediatric Patients 1 Running head: SCHOOL REINTEGRATION AND PEDIATRIC PATIENTS UNIVERSITY OF LA VERNE LA VERNE, CALIFORNIA SCHOOL REINTEGRATION AND PEDIATRIC PATIENTS: PROCESS AND STRUGGLE FOR CHRONICALY ILL STUDENTS AND SCHOOL PROFESSIONALS A Paper Prepared for EDUC 596 In Partial Fulfillment of the Requirements for the Degree Master of Science in Child Life Heather Boyd August 2008

2 School Reintegration and Pediatric Patients 2 Abstract The purpose of this literature review is to examine the school reentry process for pediatric patients, the role of the school counselors, and the impact of the return of the student-patient on the teachers. The focus is children affected by traumatic brain injuries (TBIs), chronic illnesses, and different types of cancer. The roadblocks to facilitating successful school reentry programs, along with the laws and policies protecting the affected children are considered. Finally, a model school reentry program is reviewed.

3 School Reintegration and Pediatric Patients 3 Introduction Modern medicine has improved the long-term survival rate for children with major illnesses therefore producing an increasing numbers of pediatric patients who return to school. Chronic illnesses such as asthma, allergies, diabetes, and epilepsy (also known as seizure disorders), affect at least 10 to 15 percent of American children ( National Asthma Education and Promotion Program, American Diabetes Association, American School Health Association, Epilepsy Foundation, The Food Allergy and Anaphylaxis Network, & NSBA, 2008). School reentry programs encourage children with cancer, traumatic brain injuries, or other chronic illnesses to continue their education and lead a normal life. Returning to school is important for pediatric patients because it provides a sense normalcy for the child and their family. School reentry programs help address and further develop the pediatric student s psychosocial and cognitive development. School reentry as well, helps the pediatric students rejoin their peers and form relationships with other children (Chekryn, Deegan, & Reid, 1987; The Leukemia & Lymphoma Society, 2006). Kaffenberger (2006) reports an estimated 4.4. million children or 6.5% of all children under the age of 18 have a chronic condition severe enough to interfere with participating in normal activities such as school. Nabors and Lehmkuhl (2004) found about 15-20%, or about 10.3 million, of the children in the United States live with a chronic medical condition. Therefore, school reentry programs are necessary to help these children continue with successful positive school experiences. This literature review will explore the school reentry process, barriers to successful school reentry programs, the impact of school reintegration on the teachers, government disability laws, how to promote positive school reentry programs and provide examples of current model programs.

4 School Reintegration and Pediatric Patients 4 The School Reentry Process The school reentry process can be challenging for any student with a chronic illness, cancer or traumatic brain injury (TBI). Deidrick and Farmer (2005) reviewed the characteristics of children with TBI and the impact of these characteristics on school performance. They describe the ideal school reentry process, identify existing model programs, and outline common barriers and solutions for the school reentry process. Four key principles for school reentry for children with TBI are presented by Deidrick and Farmer (2005) are: i) Assessments, ii) Multidisciplinary Teams, iii) Facilitating Peer Interactions, and iv) Planning for Provision and Withdrawal of Support. The researchers found that assessments tailored to the individual child s needs may facilitate the development of an individualized reentry plan based on the child s personal strengths and weaknesses, allowing them to monitor the child s progression and modify the plan when needed. Nabors and Lehmkuhl (2004) found using a family-centered model of care would be an optimal approach for educational plans for chronically ill students. These educational plans become even stronger when they include a strengths-based focus in terms of the student s skills and goals for fostering the student s social and emotional development (Nabors & Lehmkulhl, 2004). Deidrick and Farmer (2005) also found information regarding the child s health status and physical abilities allows for better preparation and assessment of the school environment and development of a health plan. Educators having injury-specific medical information may educate others about the child s physical, cognitive, and behavioral presentation (Deidrick & Farmer, 2005).

5 School Reintegration and Pediatric Patients 5 Having multidisciplinary teams are important because they can provide a wide range of expertise that can be accessed to help address the child s needs (Deidrick & Farmer, 2005). The authors feel that the child s family should be the center of this team. Parents are key components because they can provide information about past and current child functioning, identify specific goals, implement treatment strategies, facilitate peer relationships, and identify support sources. As well, they found it useful to have case managers at the head of the team in order to facilitate communication and identify team needs. Utilizing the individualized education plan (IEP) can be used as a communication tool, which organizes and documents team efforts during the school process. In order to facilitate peer interactions between the injured child and his/her schoolmates, providing information about the child s status after an injury and contact through cards, phone calls, s and visits may be reasonable. The child s peers may feel afraid to interact with him/her, and peers may best cope by providing them with developmentally appropriate information about the child s condition (Deidrick & Farmer, 2005). Having pre-reentry information sessions with the child, their family and classmates can help clear up misconceptions. Special education supports that help the child with TBI develop a system of support, e.g. buddy system and social skills training interventions, should also be considered. When planning adequate provisions and withdrawal of support, the Individual Evaluation Plans (IEP) and 504 plans should be considered for support within the special education system. As well, Deidrick and Farmer felt that regardless of the type of plan, it should be of brief duration and include a schedule of frequent review dates so that support can be withdrawn or added as needed.

6 School Reintegration and Pediatric Patients 6 The Role of School Counselors Kaffenberger (2006) found studies demonstrating the benefits to the child when schools, families, and hospital teams work together to facilitate a return to school for the student patient. Kaffenberger described the vital role that the professional school counselors can play in facilitating support for school reintegration programs. The school counselors were found to provide services to children with illness and their families which may include gathering homework, arranging 504 plans, educating the teachers and classmates about the student s chronic illness and meeting with the parents, administrators, and faculty. The author found the most important roles for school counselors were in preparation for the student s return to school. School counselors can provide parents with information regarding homebound instruction, policies, tutors, any potential need for special education, and preparing them for school reentry. The counselors are able to provide siblings with services since they are so often overlooked in the school reentry process. In terms of the siblings, the most important role the school counselor can play is giving them a safe place to express their needs and discuss prior experiences (Kaffenberger, 2006). Nabor and Lehmkuhl (2004) found several key roles for school mental health clinicians, child life specialists, and school counselors, which included (i) helping the students with frequent absences; (ii) providing counseling and support for parents and children; (iii) teaching children strategies for coping with medical fears; (iv) assisting children and their families with managing side effects related to medical care; (v) developing interventions for the classroom and emergency medical plans; (vi) consulting and collaborating with parents, school staff, and the medical team; (vii) assisting in developing educational plans and developing plans to improve

7 School Reintegration and Pediatric Patients 7 adherence to medical regimes, self-care at school, or classroom behaviors; (viii) assessment and intervention to improve academic and cognitive functioning; and lastly (ix) providing counseling and guidance for children to facilitate his/her coping with social and emotional problems (p. 5). Roadblocks to Successful School Re-entry There are many roadblocks which interfere with school personnel and other team members providing successful school reentry programs. Kaffenberger (2006) and Deidrick and Farmer (2005) both mentioned some barriers to providing a successful school reentry program which included: i) a lack of communication, ii) a lack of information and training, and iii) unsupportive school polices. Lack of communication can be a massive roadblock for a productive school reentry. Kaffenberger (2006) discovered that families coping with their child diagnosis may be unaware of programs the school have in place to help with future school return. Once the child has returned to school, the lack of communication between the family, the school, and the health care team can also influence the next barrier. Norris and Closs (1999) stated that parents described how medical crises or inappropriate school responses to a medical need had resulted in conflict. Examples include teachers not being informed of a student s medical condition and parents being uniformed of changes in school staff or programming. The families and health team may have a lack of information and understanding of specific details concerning the services that schools can provide. Also, the schools may lack training, information and understanding of the nature of the diagnosis and the medical needs of the child returning to school (Kaffenberger, 2006). Norris and Closs (1999) discovered cases of school counselors and the teachers being unaware or informed that the effects of treatments and irradiation could cause cognitive impairments in children and had therefore offered no additional help. Norris and Closs (1999) also found many of the teachers in their study acknowledging the

8 School Reintegration and Pediatric Patients 8 need for more staff development, training for special needs children with serious medical conditions, initial training and in-service courses. The Royal Children s Hospital Educational Institute (2008) feel there needs to be one constant key school contact person who will be responsible for all issues concerning pre-entry and post-entry of the student's return to their school. It is imperative to discuss with the family the best way to communicate information about the student s illness to school staff, while respecting issues of confidentiality. The Royal Children s Hospital Educational Institute (2008) also find it essential to keep channels of communication open between the student, family, school and hospital. Deidrick & Farmer (2005) found for children with TBIs that much of their rehabilitation would be within the school, and faculty would have little training about TBI. Another barrier discovered is the school system s regulations and policies regarding access to homebound instruction, special education and Section 504 services. Kaffenberger (2006) found that to qualify for homebound instructional services, some policies require the students be absent from school for 30 days before the services are authorized all the while the child is not permitted to attend or visit school. Kaffenberger (2006) found an additional barrier which contributes to a lack of success for students is prolonged absences. These absences can contribute to a sense of learned helplessness and despair, and absences interfere with coping and the rehabilitative process. Deidrick and Farmer (2005) discovered problems unique to children who have suffered TBIs that have negative effects on their academic and social success in regards to school reentry. These include an uneven pattern of cognitive abilities, learning problems that are not easily captured by structured tests, new behavioral and emotional disorders, and a lengthy and unpredictable course

9 School Reintegration and Pediatric Patients 9 of recovery. This may impact the difficulties teachers may face when a child with a chronic illness, TBI or cancer returns to their classrooms. The Impact of School Reentry on the Teachers Parents find it difficult to send their ill child to school and many teachers similarly find it difficult to have a chronically ill child in the classroom. Chekryn et al (1987) describe the dilemmas and feelings teachers are confronted with when a child with cancer returns to the classroom. They discovered two main themes from their surveys i) the dilemmas of teachers, and ii) the personal impact on teachers. Chekryn et al. (1987) interviewed children returning to the classroom, their parent(s), and teachers. The children were from a pediatric oncology centre serving a large urban and rural area. Theses children were returning to school for the first time after being treated for Hodgkin s disease, lymphoma, leukemia, and sarcoma. Dilemmas of Teachers Educators within the school system are faced with new demands and dilemmas as they attempt to facilitate the child s reintegration back into the classroom (Chekryn, et al., 1987). Four dilemmas were discovered by the authors include i) balancing academic expectations with other aspects of the school experience, ii) obtaining information versus respecting privacy, iii) determining appropriate discipline, and iv) determining appropriate emotional support (p. 162). The first dilemma for the teachers was balancing the academic expectations of the children reentering their classrooms. The teachers felt the most important aspects were normalization of academic achievement and building peer relationships. The teachers found it challenging on how to balance academic expectations without neglecting other aspects of the child s school experience (Chekryn et al., 1987). The child s degree of academic achievement is

10 School Reintegration and Pediatric Patients 10 affected by absences and their previous performance and academic abilities. The continual absences for treatments caused difficulties for the teachers to be able to educate, assist with learning needs and provide support for the child. The authors discovered that teachers felt worried when it seemed the child had worked to their best ability and were unable to achieve a passing grade as a result the teachers modified the program of studies in response to the child s individual needs and illness experiences. The teachers also used mutual problem solving and shared responsibilities with the student to provide inclusion of the child s perspective. Also, the differences in expectations of the child s academic performance between the parents and teachers contributed to the inconsistencies in the teacher s expectations of the child. This leads to the second dilemma for teachers outlined by Chekryn et al (1987) which was obtaining information. The continuation of the child s academic development is initially implemented by their parents and they are a primary source of information of the child s well being for the teachers. Teachers felt a dilemma when they needed information about the child and their illness because they felt the illness was a private family matter and did not want to be intrusive. However, they wanted to be available to aid the child and their family. As a result they waited for the parents to initiate the involvement (Chekryn et al., 1987). The results of the surveys indicated that the teachers wanted to know the physical and emotional effects of cancer and its treatment for their specific student-patient and wanted guidelines as to how to deal with changes, especially emotional ones. More importantly the authors found the teachers wanted to know what the overall goals were for the child and what role school played in relation to those goals. The third dilemma the teachers encountered was determining appropriate discipline for their student-patients. Chekryn et al (1987) found the teachers noticed the children were stressed

11 School Reintegration and Pediatric Patients 11 by their experience with cancer and felt they did not want to add to their existing high stress level. As a result, teachers tended to relax their usual discipline standards. Norris and Closs (1999) also found that teachers had similar feelings of not wanting to add to the student s negative stressors, but instead wanted the student to have a positive school experience. The inconsistency and lack of clear boundaries would hinder the normalcy of the school experience for the child. The final dilemma was determining appropriate emotional support the teacher should provide these children (Chekryn et al., 1987) as the teachers were confused as to how much and what kind of emotional support they should provide. Based upon how the child felt about his/her illness, the teachers took their cues to provide appropriate emotional support. For example, when children tended to be open about their experience with cancer, teachers responded by providing increased support and assistance with problem solving (Chekryn et al., 1987). Personal Impact on Teachers The researcher found the teachers expressed feelings of shock, worry, uncertainty, and frustration when a student patient returned to the classroom (Chekryn et al., 1987). They had uncertainties about the child s prognosis and whether or not the child would be alive next year. They were concerned about the child s present quality of life and the effect of the cancer experience long term. They expressed frustrations with their inability to provide more individual tutoring and when they perceived that the child was experiencing emotional difficulty, they wanted to provided support but felt unprepared about how to proceed (Chekryn et al., 1987). To cope with their personal feelings, theses teachers depended upon internal resources for support and sought out other teachers, their own family members and the child s parents. These teachers

12 School Reintegration and Pediatric Patients 12 used library books and newspaper articles as research because the internet had not been invented during the time frame of these studies. Educational Disability Laws In the United States, there are three public laws that protect the rights of students with educational problems related to cancer treatment and chronic illnesses. These laws are: The Americans With Disabilities Act (ADA) which protects against discrimination in employment, transportation, communication, government, and public accommodations. ADA is very useful to students who are seeking employment or planning to attend public colleges or universities ( Lance Armstrong Foundation, 2008). The Individuals With Disabilities Education Act (IDEA), protects students (aged 3-21 years) and ensures public schools, colleges, and universities provide a free, equal and appropriate education ( Lance Armstrong Foundation, 2008). The Rehabilitation Act of 1973 Section 504 requires all educational institutions receiving federal funding to provide adequate accommodations for students with physical or learning impairments, or a record of impairments, that may limit at least one major life activity ( Lance Armstrong Foundation, 2008). Promoting Successful School Reentry Program Model School Reentry Programs Kaffenberger (2006) describes six components for an ideal model of a successful school reentry program (p. 226). These include the following: i. Identify a school based or medical team coordinator of services,

13 School Reintegration and Pediatric Patients 13 ii. iii. iv. Provide direct services to the student, Consult with the family, Educate the school personnel, v. Provide information to classmates, and vi. Improve the medical team. Rollins, Bolig, and Mahan (2005) suggest three principles can be applied to maximize development planning for children with complicated medical problems returning to school settings (p. 193). These included the following: i. Use a full understanding of the child s medical condition to both plan developmentally opportunities at a time when the child has the most energy and endurance, and during activities; to observe for signals of stress. ii. Flexibly tailor plans to the individual child s abilities, interests, and needs. iii. Assure familiarity with the child s medical equipment in order to plan ways to creatively adapt equipment to meet the child s developmental needs. Daly, Kral and Brown (2008) recommend four strategies for promoting an ideal educational experience and school reentry process for children with cancer and sickle cell disease (p ). These included the following: i. Educate family members and educational professionals about the cognitive outcomes of childhood cancers and sickle cell disease.

14 School Reintegration and Pediatric Patients 14 ii. Engage in multidisciplinary consultation efforts with family members, educational professionals, and health care professionals that focus on assessment reintegration and intervention. iii. Conduct frequent and comprehensive cognitive assessments. iv. Provide early intervention services. The following are examples of model school reentry programs. Deidrick and Farmer (2005) presented the North Carolina s Project ACCESS (Assuring Coordinated Care, Education, and Support for Survivors of Pediatric Brain Injury) as a program which uses a case management model for facilitating transition to school and community. The Pediatric Acquired Brain Injury Community Outreach Program (PABICOP) uses an interdisciplinary team to coordinate care, and their team includes a school liaison that is responsible for assisting with school reentry, designing and implementing teacher in-service training, and facilitating communication between school and the team. The Lance Armstrong Foundation: Livestrong at School: provides lesson plans for teachers, brochures, booklets, life stories of cancer survivors and additional resources for parents, caregivers and educators. The foundation also helped fund the Trish Greene Back to School Program with the Leukemia and Lymphoma Society ( Lance Armstrong Foundation, 2008). The Trish Greene Back to School Program for the Child with Cancer was designed to increase communication among healthcare professionals, parents, patients and school officials to ensure a smooth transition from active treatment back to school and daily life. Materials, videos

15 School Reintegration and Pediatric Patients 15 and other printed resources are available at all local chapters ( Leukemia & Lymphoma Society, 2006). Dana-Farber Cancer Institute: The Back to School Program provides student and family support, back to school visits which use puppets, teaching dolls, videos and written material to educate the students about cancer and how to support their ill classmate. The program provides guidance, workshops for school personnel, and school liaison services including educating school personnel about cancer, its treatment, and the long-term effects of cancer treatment, facilitating neuropsychological evaluations of children in conjunction with a Children's Hospital, on-going consultation with families and school systems to address educational needs, and educating communities about long-term effects of childhood cancer treatment ( Dana-Farber Institute, 2001). The Starlight Starbright Children s Foundation created programs for children and adolescents with serious health conditions. The Starlight Starbright Children s Foundation has worked with experts from healthcare settings to create brochures, films and CD-ROMs designed to entertain and educate for children, parents, and professionals ( Starlight Starbright Children s Foundation, ). The Explorer Series (CD-Rom) has interactive information for children to learn about the following; sickle cell disease, kidney disease, cystic fibrosis, intravenous (IVs), the radiology center, and exploring blood cells. The Back To School: Are You A Teen Living With A Chronic Illness? (CD-Rom) provides teenagers with videos of other teenagers who have similar health issues; and information about returning to school, communicating with their doctor; and coping with hospitalizations ( Starlight Starbright Children s Foundation, 2005).

16 School Reintegration and Pediatric Patients 16 Summary Children with chronic illness, traumatic brain injuries and cancer are absent more than healthy children. Sexson and Madan-Swain (1993) discovered 20% of the pediatric population may be coping with chronic illness interrupting his/her daily life functions. These particular children require assistance in reintegrating back into the school system. It is imperative for the student s team of professionals to maintain open communication amongst themselves, as well proper training and education of the illness, the child s abilities and limitation for both school professionals and parents would beneficial to the child s school reentry and development. Through a successful school reentry process administered by trained school counselors, and maintained by a multidisciplinary team, the ill children and their families can profit from these great programs.

17 School Reintegration and Pediatric Patients 17 References Chekryn, J., Deegan, M., & Reid, J. (1987). Impact on teachers when a child with cancer returns to school [Electronic version]. CHC, 15(3), Daly, B., Kral, M., & Brown. (2008). Cognitive and academic problems associated with childhood cancers and sickle cell disease [Electronic version]. School Psychology Quarterly, 23(2), Dana-Farber Cancer Institute. (2001). The back to school program. From Dana-Farber Cancer Institute Web. Retrieved March 28, 2008, from support/back-to-school/default.html Deidrick, K., & Farmer, J. (2005, Summer). School reentry following traumatic brain injury [Electronic version]. Preventing School Failure, 49(4), Lance Armstrong Foundation. (2008). Learning and living with cancer: advocating for your child s educational needs. From Livestrong at School, Lance Armstrong Foundation Web. Retrieved March 28, 2008, from K1PxHmF/b /k.BD38/School.htm

18 School Reintegration and Pediatric Patients 18 Kaffenberger, C. (2006, February). School reentry for students with a chronic illness: A role for professional school counselors [Electronic version]. ProQuest Psychology Journals, 9(3), Nabors, L. & Lehmkuhl, H. (2004, March). Children with chronic medical conditions: recommendations for school mental health clinicians [Electronic version]. Journal of Developmental and Physical Disabilities, 16(1), National Asthma Education and Promotion Program, American Diabetes Association, American School Health Association, Epilepsy Foundation, The Food Allergy and Anaphylaxis Network, and NSBA. (2008). Students With Chronic Illnesses: Guidance for Families, Schools, and Students. Retrieved June 28, 2008, from public/lung/asthma/guidfam.pdf Norris, C. & Closs, A. (1999, March). Child and parent relationships with the teachers in school responsible for the education of children with serious medical conditions [Electronic version]. British Journal of Special Education, 26(1), Rollins, J., Bolig, R., & Mahan, C. (2005). Meeting children s psychosocial needs across the health-care continuum. Austin, TX: Pro-ed An International Publisher. Royal Children s Hospital Education Institute. (2008). Re-entry From Hospital To School. Retrieved June 28, 2008, from entryfinal.pdf Sexson, S. & Madan-Swain, A. (1993, February). School reentry for the child with chronic illness [Electronic version]. Journal of Learning Disabilities, 26(2), , 137.

19 School Reintegration and Pediatric Patients 19 Starlight Starbright Children s Foundation. (2005). Back to school: Are you a teen living with a chronic illness? [CD-Rom]. The Starlight Starbright Children s Foundation. Starlight Starbright Children s Foundation. ( ). [CD-Rom]. Explorer Series. The Starlight Starbright Children s Foundation. The Leukemia & Lymphoma Society. (2006). The Trish Greene back to school program for the child with cancer. Welcome back: Facilitating the return to school for children cancer. White Plains, NY: The Leukemia & Lymphoma Society and the Lance Armstrong Foundation.