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School Nurse Case Management for Children With Chronic Illness: Health, Academic, and Quality of Life OutcomesMartha Keehner Engelke, RN, PhD, is Associate Dean for Research and Scholarship at East Carolina University College of Nursing, Greenville, NC
Martha Guttu, RN, MSN, BC, is a regional school nurse consultant in the North Carolina Department of Health and Human Services, Children and Youth Branch, School Health Unit
Michelle B. Warren, RN, MAEd, NCSN, is a nursing educator instructor at East Carolina University College of Nursing, Greenville, NC
Melvin Swanson, PhD, is a professor and statistician at East Carolina University College of Nursing, Greenville, NC
More children with chronic illnesses are attending school, and some of them struggle academically because of issues related to their health. School-based case management has been suggested as one strategy to improve the academic success of these children. This study tracked the academic, health, and quality of life outcomes for 114 children with asthma, diabetes, severe allergies, seizures, or sickle-cell anemia in 5 different school districts who were provided case management by school nurses. The children ranged in age from 5 to 19 years. At the end of the school year, children experienced an improvement in quality of life and gained skills and knowledge to manage their illness more effectively. Classroom participation, grades, and participation in extracurricular activities also increased for many children. The study provides evidence of the positive impact school nurses have on children with chronic illness and suggests ways they can measure the outcomes of their interventions.
Key Words: school nurse • case management • chronic illness • quality of life • academic success The number of children in the United States with chronichealth conditions has increased dramatically in the past four decades (Perrin, Bloom, & Gortmaker, 2007). In North Carolina, during the 1996–1997 school year, school nurses identified 5% of students as having a chronic illness. By the 2006–2007 academic year, the number had risen to 17% (North Carolina Deptartment of Health and Human Services, 2006–2007). Although some of the increase may be because of improved case finding, the actual number of children with chronic illnesses, such as asthma, diabetes, obesity, and attention deficit/hyperactivity disorder, has increased significantly. In addition, more minority children are affected with chronic illnesses, and the management of their illness is complicated by issues such as poverty and access to quality health care (Perrin et al., 2007; Zylke & DeAngelis, 2007). Most children and their families adapt well to chronic illnesses over time (Lewis & Vitulano, 2003). However, frequent hospitalizations, fatigue, anxiety, pain, and other symptoms can put children at risk for academic problems and health complications, particularly when they are first diagnosed. School-based interventions play an important role in ensuring that students with chronic illness have the same educational opportunities as other students. School personnel, particularly school nurses, must partner with parents and health care providers to help children to manage their illness and participate fully in academic and extracurricular activities. They can do this by implementing strategies that reduce disruption to the school day, ensuring the school environment is safe, and providing case management when indicated (Special Report, 2003). The National Association of School Nurses (NASN) has a position statement that supports the central role of the school nurse in providing case management services for children (NASN, 2006). This position statement states that the goal of case management is to decrease fragmentation and duplication of care, enhance the quality and cost effectiveness of care, and improve the health and quality of life of children with chronic illnesses. School nurses, by virtue of their education and expertise, are the most appropriate persons in the school setting to provide case management to children with chronic illness. Definitions of case management vary, but they usually include the importance of a comprehensive approach and coordination of services across a continuum to meet the needs of an individual with complex health care needs (Farrior, Engelke, Collins, & Cox, 2000; Reel, Morgan-Judge, Peros, & Abraham, 2002). Some definitions focus on controlling costs, whereas others stress the importance of improving health outcomes for the individual. After reviewing several definitions, we adopted the following definition of case management to guide our project: Case management is a process by which the school nurse identifies children who are not achieving their optimal level of health or academic success because they have a chronic illness that is limiting their potential. Case management is based on a thorough assessment by the school nurse and involves activities that not only help the child deal with problems but also prevent and reduce their occurrence. Case management includes nursing care directed toward the child and coordination and communication with parents, teachers and other care providers. The interventions are goal oriented, based on the specific needs of the child, and evaluated based on their impact. This definition incorporates several important concepts. First, case management is more than crisis management. It implies a long-term relationship with the child and family that usually spans the school year. Second, it is more than responding to problems. Case management includes prevention. Case managers do not wait until a problem occurs to intervene; they meet with the child, parent, and teacher on a regular basis to prevent problems. Third, the interventions for each child have commonalities, but they also have differences. Some children need more direct intervention and teaching, whereas in other cases, the needs of the child are met through interventions with parents, teachers, and health care providers. Finally, case management is evaluated based on the goals for the child. It is not a random set of interventions. It is goal-based, and success is based on improvements in the child’s health, quality of life, or academic success—not on the number or type of interventions the school nurse implements. Several authors have found that case management can contribute to positive academic and health-related outcomes. Crickmore, Jones, Engelke, and Mott (2002) found that children with asthma who were case managed had a reduction in hospitalizations and emergency department visits. Others have found that case management of children with asthma by school nurses led to an improvement in asthma severity and an increased likelihood that children would have emergency medications available at school (Taras, Wright, Brennan, Campana, & Lofgren, 2004). In a 4-year case management development project, Bonaiuto (2007) reported that the development of tools and educational resources related to case management led to increased involvement in case management by school nurses. In addition, 84% of the students case managed improved in 1 or more of 5 target areas. Reel and colleagues (2002) found that a rural model for school-based case management provided a framework that guided nurses in the identification of health risks and the provision of services to support students, families, and communities. Although there is support from the specialty organization and some research that shows that school nurses are effective case managers, most school nurses do not offer comprehensive case management to children with chronic illnesses. In an unpublished survey administered to lead school nurses in North Carolina, 88% reported they had not had education on the core components of case management, and only 23% reported that nurses in the district provided case management. Lack of information on the components of case management as well as high student to nurse ratios makes it difficult for school nurses to initiate a case management program, particularly in rural counties with limited resources. In 2006, a school nurse consultant serving 21 counties in rural eastern North Carolina and the associate dean for research and scholarship at a College of Nursing used a regional approach to implement and evaluate a school-based case management program for children with chronic illnesses. The outcomes included the impact of case management on the health, academic performance, and quality of life of children with chronic illnesses.
Procedure A memorandum of understanding (MOA) was developed between five school districts and the College of Nursing. The purpose of the memorandum was to ensure the school districts would support school nurse involvement and allow them to participate in regional training sessions. In addition, the school districts agreed to allow the project nurse and a computer support technician employed by the College of Nursing to meet with the nurses in the schools and transfer data to the College of Nursing for analysis. A program for data collection developed by the technology team at the College of Nursing allowed school nurses to collect data on handheld computers (PDAs), which were purchased with grant funds. The MOA also included a parent permission form to be signed by a parent prior to enrollment of his or her child. The permission form and the protocol were reviewed and approved by the University and Medical Center Institutional Review Board. Training began at a meeting with lead school nurses where the project was presented, including criteria and procedures for enrollment. Next, a training session for all school nurses was held in conjunction with the Eastern Area Health Education Center. The training reviewed principles of case management and procedures for enrollment. The session emphasized that children who would be case managed were those whose needs were ongoing and interfering with their performance at school. It was stressed that case management was more than crisis intervention and that it involved a commitment to working with the child and family on a regular basis, not only to control symptoms but to prevent problems. Initially, the school nurses were asked to enroll 5 children. For many, this was difficult, particularly because many of them had 2 or 3 schools. After the initial session, two additional sessions were held through the school year to monitor progress and answer questions. The project nurse and computer support technician visited each school district several times and were available by phone and e-mail on a daily basis. Nurses were asked to enroll children with asthma, diabetes, severe allergies, seizures, and sickle-cell anemia. These were the most common diagnoses for children with chronic illness based on the Annual School Health Services Report (North Carolina Department of Health and Human Services, 2006–2007). Nurses enrolled children who, based on their assessment, were struggling academically or were having difficulty managing their illness at school. After parental permission was obtained, the nurse gathered baseline data that included demographic information (age, grade level, insurance, school, health care provider), grades, standardized test scores, attendance, and participation in extracurricular activities from the previous school year. The nurse also completed a baseline quality of life assessment on each child. At the end of the school year, measures for the same variables were obtained, and the quality of life instrument was repeated.
Instruments Quality of life for children with diabetes was measured using the PedsQL 3.0 Type 1 Diabetes Module (Varni et al., 2003). This 28-item instrument has five subscales: diabetes symptoms (11 items); treatment barriers (4 items); treatment adherence (7 items); worry (3 items); and communication (3 items). Reliability was highest for the symptom (.81) and communication sub-scales (.77) and lowest for the worry scale (.63). Given the lower reliability (range of from .6 to .7 for the worry, barriers, and adherence subscales), the authors suggest caution when interpreting the results across groups but note that they are appropriate for descriptive purposes (Varni et al., 2003). Small to medium negative correlations were found between the scales related to treatment barriers and treatment adherence with HbA1c levels. Children with seizures, sickle-cell anemia, and severe allergies completed the PedsQL 4.0 SF15 (Varni, Seid, & Rode, 1999). This is a health-related quality of life instrument consisting of physical health (5 items), emotional functioning (4 items), social functioning (3 items), and school functioning (3 items). All of the subscales except physical health can be combined into a 10-item subscale called psychosocial health. There are three versions of each instrument based on the child’s age (5–7 years; 8–12 years; 13–18 years). All instruments use a Likert-type format that asks the child to report whether an item is a problem 0 (never), 1 (almost never), 2 (sometimes), 3 (often), or 4 (almost always). The version for children from 5 to 7 years of age uses smiling faces rather than words, and responses are ranked 0 (not at all), 2 (sometimes), or 4 (a lot). For scoring, responses are transformed to 100, 75, 50, 25, and 0 respectively, resulting in a scale range of 0 to 100 with higher scores indicating better quality of life. In addition to the baseline data, the nurse chose individual goals for each child. The goals were disease specific and developed using The School Nurse Source Book of Individualized Health Care Plans, Volume 1 and 2 (Haas, 1993; Arnold & Silkworth, 1999) with input from the nurses participating in the project. Typical goals reflected health outcomes, academic outcomes, family involvement, and school/environmental support. For example, a health outcome for a child with asthma might be "checks peak flow meter and records highest value as ordered in health plan," and a goal for a child with sickle-cell anemia might be "reduce episodes of sickle cell crisis." An academic goal might be "improved academic performance," while a family goal might be "family/guardian participates in care outlined in individualized health plan (IHP)." Nurses chose goals appropriate for the child and evaluated whether the goal was met or unmet at the end of the school year. Interventions were developed using the same framework as the goals and fall into the following categories: teaching and counseling, direct care, working with teachers and school personnel, working with families, and making referrals. The list of interventions includes general interventions that are appropriate for all children and others that are more specific to the illness. For example, two interventions that are used for all children with chronic illnesses are to develop an IHP and an Emergency Action Plan. Other interventions that are appropriate for all children include providing psychosocial support, monitoring classroom participation, and contacting parents or primary care provider. In addition, there are specific interventions related to the illness. For example, interventions for a child with severe allergies would include teaching the student how to plan for meals at parties, how to recognize signs and symptoms of a reaction, and how to self-administer medication. A specific intervention for a child with diabetes would be to teach the child how to do a carbohydrate count in preparation for lunch or to monitor and record the glucose level; a family-centered intervention for a child with diabetes would be to contact the family and ensure that a low box and the appropriate supplies are at school. For a child with seizures, the specific interventions include teaching the teacher and other school personnel how to recognize a seizure and how to handle an emergency. The initial intent was for the nurses to enter goals and each intervention on a PDA and track this during the school year. Because of technical difficulties related to entering and exporting the data, this was not possible. Therefore, this information was obtained by written self-report of the nurses. At the final meeting of the school year, the school nurses were asked to estimate the percentage of time they had spent in direct care, teaching and counseling, working with teachers, working with families, and making referrals. They were also asked to evaluate whether or not they had met each goal that had been established for each child. This information was summarized and presented to each nurse at the first meeting of the next academic year. They were also asked to verify the data and change information that was not accurate.
There were 114 children enrolled in the project. Demographic characteristics of the sample are summarized in Table 1. Of these, 53.5% had asthma, 32% had diabetes, 7% had seizures, 4% had severe allergies, and 3.5% had sickle-cell anemia. The majority of children were African American (54%). Children were considered to be from a low-income family if they received free or reduced lunch or if they had Medicaid. Based on these criteria, 63% of the students were from low-income families.
The pattern and content of interventions varied. Seventy-nine percent of the students were seen weekly, 8.4% were seen daily, and 44.2% were seen monthly. Many students had a combination of patterns during the year, and it was common for a period of increased activity to be followed by less intensive interventions. The most common type of intervention was teaching and counseling (35%), followed by direct care (22%), working with teachers (19%), working with families (15%), and making referrals (9%). As noted above, because of difficulty retrieving data from the PDA, it was not possible to determine the number of times a nurse provided a specific intervention, although this problem has been addressed for the 2nd year of this study. To evaluate changes in academic outcomes, differences in attendance, grades, and end of grade testing scores were compared for the previous and current school year. Attendance in the previous year varied widely, from 0 to 77 days of missed school. Change in attendance varied from +35 days to –22 days. Although some children had a significant improvement in attendance, other children missed more school, and many children had similar attendance in both years. On further analysis, it appeared that there were discrepancies in how attendance was measured across the counties, and in some cases, an increase in absences was related to variables other than the illness, such as a car accident or because the child developed the illness at the beginning of the year in which he or she received case management. Although the child missed a number of days at the beginning of the school year, attendance improved during the latter part of the year. Because the school districts did not report attendance by semester, we were unable to capture this type of positive outcome. To evaluate changes in grades, children were categorized as A/B, B/C, or D/F students based on the grades from the previous year. Because grades are not assigned until the 3rd grade and some students transferred into the school system, grades were not available for all children. Sixty-nine students had grades for both years. In the year preceding the project, 14 children were A/B students, 25 were B/C students, and 30 were D/F students. There was little change in the grades of the first two groups. However, 18 (60%) of the poorest students improved their grades: 11 (37%) became B/C students, and 7 (23%) became A/B students. End-of-grade (EOG) scores for students who had scores in both years demonstrated similar changes. Actual scores on the EOG exams are converted to a score of 1 through 4. A score of 3 or 4 is considered passing. Of the 41 students who had math EOG scores for both years, 17 (41%) had failed the EOG in the previous year. During the current year, 11 of these students had higher scores (65%), 2 had lower scores (12%), and 4 (23%) had the same score. Eight children (47%) who failed their math EOG in the previous year passed in the current year. There were 41 children who had reading EOG scores for both years. Twelve students (29%) had failed the reading EOG in the previous year. During the current year, 8 (67%) of these students improved, 2 declined (17%), and 2 (17%) received the same score. Seven students (58%) who had previously failed the EOG in reading passed in the current year. The next area of analysis was a comparison of the quality of life scores at the beginning and the end of the school year. Comparison data are summarized in Table 2. For children with asthma, there was a significant improvement in total quality of life (p < .001, Eta squared = .47), the treatment scale (p < .001, Eta squared = .49) and the symptom scale (p = .001, Eta squared = .18). For children with diabetes, there was a significant improvement in the treatment barrier sub-scale (p = .01, Eta squared = .19). Using the guidelines proposed by Cohen (1988), effect sizes of .14 or larger are considered large effects. Therefore, all of the effect sizes for the significant findings are large.
Although a statistically significant improvement was not found on other subscales, this may in part be because of the small sample size, particularly for the children with seizures, allergies, and sickle-cell anemia. Because of this we calculated the percentage of change in quality of life scores at baseline and the end of the year. As noted in Table 2, most children experienced a positive change in quality of life scores that might be clinically significant. This was particularly true for the psychosocial scores for children with seizures and sickle-cell anemia. For children with sickle-cell anemia, this increase occurred even though they did not report an improvement in their physical health. Quality of life scores for children with severe allergies were similar at baseline and end of year. Finally, the degree of achievement for goals set for each child was examined. There were from 21 to 23 possible goals for each diagnosis. Nurses were also asked to add goals if they had established a goal for a child that was not on the list. Table 3 lists goals that were specific for a particular diagnosis, and Table 4 lists general goals that could apply across diagnoses with minor changes in wording.
Goals were individualized based on the child’s needs; therefore, all goals were not appropriate for all children, which accounts for the differences in numbers. In addition, some goals were more directly related to nursing interventions, whereas others were affected by factors outside the domain of nursing. As expected, nurses were more successful in achieving goals that were under their control. For example, goals related to safety, such as having emergency medications at school, were achieved at a very high level, usually close to 100%. Ensuring that staff received appropriate training was also achieved at a high level. In contrast, reducing HgA1C levels is a goal that is closely aligned with the medical care that the child receives, not nursing care. This goal was not achieved in many cases.
This study examined health and academic outcomes for children with chronic illness who received case management from school nurses. Improvement in academic measures was found primarily among children who were not doing well in school. More than half of the students who were failing in the previous school year improved their grades. This finding must be interpreted with caution. The students who were failing in the previous year most likely received remedial educational interventions during the current school year, and we were not able to control for this variable. Although the amount of improvement because of case management and the amount because of educational remediation are not clear, anecdotal information from the nurses suggested that case management did have an impact and that at least some of the improvement was related to the interventions provided by the school nurse. Future studies related to academic performance need to control for confounding variables such as educational interventions and use more sensitive measures of academic improvement. Currently, during the 2nd year of this project, nurses choose a specific time frame and provide more detail about attendance. Instead of using a general measure of grades, a grade point average for each child is calculated and compared to the grade point average for the current year. In this study, school nurses made a significant contribution to the Coordinated School Health Program. A Coordinated School Health Program is a set of policies, activities, and services used to promote the health of students and staff. One of the major components of such a program is assessment of health status, provision or emergency care, and assistance in managing barriers to student learning (McKenzie & Richmond, 1998). Ensuring that appropriate medications are readily available, training staff, and implementing individualized health plans and emergency action plans are also important contributions to a Coordinated School Health Program and consistent with the NASN Position Statement on Coordinated School Health Programs. The Position Statement provides strong support for school nurse leadership in activities that foster a Coordinated School Health Program (NASN, 2001). School nurses demonstrated the broad scope of their role that included not only care of the child but collaboration with parents, teachers, and other health care providers. In the qualitative data collected at the end of the year, the school nurses identified barriers to case management. For about one third of the children, the nurses felt that a major barrier was parents who were not able or unwilling to support the optimal health of their child. Some nurses noted that during the course of the year, the most positive thing they accomplished was that the parent would now return their phone calls and collaborated with them to foster the success of the child—something that the data collection tools did not capture but an important component for future research. During the 2nd year of the study, which is ongoing, we have added a short evaluation by parents and at least one teacher, which is collected at the beginning and end of the school year. This will allow us to evaluate case management outcomes from a different but important perspective. The school nurses also had a positive impact on the quality of life of these children. The children who received case management reported an improved quality of life particularly in relation to their psychosocial adjustment to their illness.
Limitations
Implications for School Nursing Practice "As the prevalence of chronic illness continues to increase in schools, it is critical that school nurses provide case management services and document the outcomes. . . . In this way, administrators and policy makers will have concrete data to support the expansion of school nursing services in an era of competition for limited resources." Another important implication of this project is that outcome data must be used to influence policy and showcase the contributions of school nurses to school administrators. At the end of the school year, each county received a large format poster similar to the type that is used at professional meetings. Data for the total project and county specific data were provided, and the poster was displayed for school officials. Information about the project was featured in some of the local newspapers, and the project nurse assisted school nurses in one county in doing a presentation to the school board, giving important visibility to the role and contributions of school nurses. The project is continuing during the 2007–2008 school year, and several revisions have been made to address some of the identified problems. Data is being entered into a secured server housed at the College of Nursing rather than on a PDA. This allows for ongoing monitoring of data and is less labor intensive for the nurses. Goals and interventions have been revised and clearer baseline measures are being collected. This will allow for a more precise comparison of grades. The criteria for enrollment have been expanded beyond the original five diagnoses, and this year children with other chronic illnesses are being followed. Overall, this study is an important first step in documenting the process and outcomes of school-based case management. Examining the outcome data tells a big part of the story, but perhaps the real success is most evident in the words of one of the nurses who participated. She enrolled a high school student with type 1 diabetes who had struggled academically in the previous year. The student had missed 29 days of school, and her grades were poor. The nurse described her success in working with this student: Something clicked. This year is a different story. She only missed 7 days of school and 5 of those were in the first semester. Her grades improved dramatically, and she was exempt from 3 of her 4 exams (all As!). The best thing is that she learned to control her diabetes rather than letting it control her. On the last day of school, we celebrated—with a piece of sugar free cheesecake! How lucky this student was to have a school nurse available. As the prevalence of chronic illness continues to increase in schools, it is critical that school nurses provide case management services and document the outcomes. School nurses need education on how to provide case management, and when they do provide the service, they need to track and report the outcomes. In this way, administrators and policy makers will have concrete data to support the expansion of school nursing services in an era of competition for limited resources.
This study received the 2008 NASN Completed Research Award. Authors’ Note: The authors gratefully acknowledge the support of the Kate B. Reynolds Health Care Trust and the school nurses in Dare, Pamlico, Perquimans, Pitt, and Washington Counties.
Arnold, M, & Silkworth, C. (1999). The school nurse source book of individualized health care plans: Volume 2. Northfield, MN: Sunrise RiverBonaiuto, M. (2007). School nurse case management: Achieving health and educational outcomes. Journal of School Nursing, 23(4), 202-208[CrossRef][Medline] [Order article via Infotrieve]Chan, K, Mangione-Smith, R, Burwinkle, T, Rosen, M, & Varni, J. (2005). The PedsQL: Reliability and validity of the short-form generic core scales and asthma module. Medical Care, 43(3), 256-265[CrossRef][Medline] [Order article via Infotrieve]Cohen, J. (1988). Statistical power analysis for the behavioral sciences. (2nd ed). Hillsdale, NJ: Lawrence ErlbaumCrickmore, K, Jones, A, Engelke, M, & Mott, J. (2002). Pediatric asthma case management. Health Forum Journal, 45(6), 24-30Farrior, K, Engelke, M, Collins, C, & Cox, C. (2000). A community pediatric prevention partnership: Linking schools, providers, and tertiary care services. Journal of School Health, 70(3), 79-83[Medline] [Order article via Infotrieve]Haas, M. (1993). The school nurse source book of individualized health care plans: Volume 1. Northfield, MN: Sunrise RiverLewis, M, & Vitulano, L. (2003). Biopsychosocial issues and risk factors in the family when the child has a chronic illness. Child and Adolescent Psychiatric Clinics of North America, 12, 389-399[CrossRef][Medline] [Order article via Infotrieve]McKenzie, F, & Richmond, J. In Marx, E, Wooley, SF, & Northrup, D (Eds.). (1998). Linking health and learning: An overview of coordinated school health programs. Health is academic: A guide to coordinated school health programs (pp.1-14). New York, NY: Teachers College PressMurray, N, Low, B, Hollis, C, Cross, A, & Davis, S. (2007). Coordinated school health programs and academic achievement: A systematic review of the literature. Journal of School Health, 77(9), 589-600[CrossRef][Medline] [Order article via Infotrieve]National Association of School Nurses. (2001). Position statement: Coordinated school health program. Retrieved April 15, 2008, from http://www.nasn.org/Default.aspx?tabid=213.National Association of School Nurses. (2006). Position statement: School nursing management of students with chronic illness. Retrieved January 4, 2008, from http://www.nasn.org/Default.aspx?tabid=351.National Heart, Lung, and Blood Institute. (1997). Expert panel report 2: Guidelines for the diagnosis and management of asthma. Bethesda, MD: U.S. Department of Health and Human Services, National Institutes of Health. NIH Publication No. 97–4051.North Carolina Department of Health and Human Services. (2006–2007). North Carolina annual school health services report for public schools. Retrieved January 4, 2008, from http://www.nchealthyschools.org/docs/data/200607eoyreport.pdf.Perrin, J, Bloom, S, & Gortmaker, S. (2007). The increase of childhood chronic conditions in the United States. Journal of the American Medical Association, 297(24), 2755-2759
The Journal of School Nursing, Vol. 24, No. 4,
205-214 (2008)
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