The Journal of School Nursing2023, Vol. 39(2) 105–113© The Author(s) 2022Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/10598405221144259journals.sagepub.com/home/jsn
This article shares what was learned from the feasibility assessment of a nurse-led school-based active surveillance (SBAS) pilot to track chronic absenteeism using myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as an exemplar. This pilot encompassed a 3-year period with training and feedback from school nurses (SNs) on data collection and ME/CFS. SNs found that the SBAS process helped them effectively identifying undiagnosed conditions. The assessment revealed the importance of focusing outreach efforts and establishing relationships with the school leadership in developing health policies and programs in the school setting. The pilot data were used to develop a manual to guide SNs for the SBAS process. This can be viewed as a model for SNs in establishing a surveillance to identify and track conditions like ME/CFS. With overlapping symptoms of Long COVID to ME/CFS, this assessment may provide insights for additional efforts to understand the impact of Long COVID on students’ education.
Keywords
chronic absenteeism, myalgic encephalitis/chronic fatigue syndrome, long COVID, school-based active surveillance, chronic conditions, school nurse education
The Every Student Succeeds Act (ESSA) of 2015 compelled states to focus more on student achievement holistically. Each state had to identify a non-academic data measure of school quality or student success. Chronic absenteeism was chosen by 36 states (U.S. Department of Education, 2019).
Chronic absenteeism is most commonly defined as a student having missed more than 10% of a school year, or more than 2 days per month (Bauer et al., 2018), and has been associated with academic failure and dropout, health disparities, and health concerns (Balfanz & Byrnes, 2012; Brundage et al., 2017; Gottfried, 2019). Brundage et al. (2017) found that among secondary school students in Florida, the most common reason for absenteeism was health concerns (92.4%).
Over 7 million students (1 in 6 students) were chronically absent in 2015-2016 (U.S. Department of Education, 2019). Chronic absenteeism is more common in students with chronic conditions, particularly asthma, and those who live in poverty (Balfanz & Byrnes, 2012; Bauer et al., 2018; U.S. Department of Education, 2019). Chronic absenteeism has impacts on the achievement of all students in the classroom, not just those absent (Gottfried, 2019).
The financial cost of chronic absenteeism is felt immediately in states where schools are funded based on student attendance (Levy-Myers, 2017). Additionally, there is a long-term societal impact with increased poverty among high school dropouts (McFarland et al., 2020). Yet, despite the far-reaching effects of chronic absenteeism, Bauer et al. (2018) found a lack of a consistent or accurate system to collect chronic student absenteeism data. In addition, a review of the literature shows a focus on academic interventions for chronic absenteeism (Balfanz & Byrnes, 2012; U.S. Department of Education, 2019). School nurses (SNs) are the frontline of public health. An important role for SNs is proactively identifying students who are chronically absent for health concerns and assisting families in getting the necessary care (Jacobsen et al., 2016; National Association of School Nurses [NASN], 2016; 2018; 2020a). Although SNs play a key role of addressing chronic absenteeism (NASN 2015; 2018), little was found that outlined a standardized process for SNs.
Leveraging the SNs’ role in surveillance, NASN received funding from the Centers for Disease Control and Prevention (CDC) to develop a process for SNs to proactively identify students who may have an undiagnosed chronic condition. The CDC’s charge specifically focused on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling and complex illness affecting more than one million Americans. Estimates of pediatric ME/CFS prevalence vary in different studies from 0.10 to 0.75% (Jason et al., 2020; Rowe et al., 2017). Symptoms can be severe, causing students to miss school for long periods of time (Friedman et al., 2018). As ME/CFS is not a well-recognized condition and currently has no diagnostic laboratory tests, it is often confused with school anxiety or phobia (CDC, 2018; Friedman et al., 2018). This article shares the assessment of the acceptability and feasibility of a school-based active surveillance (SBAS) led by school nurses in the identification of chronically absent students, particularly those with undiagnosed conditions such as ME/CFS.
We used a feasibility of process design, as outlined by Morris and Rosenbloom’s (2017) Feasibility Research Guide. No intervention was included in this feasibility assessment.
Due to the focus on feasibility, six sites (school districts), in four states (Massachusetts, Florida, Michigan, and Utah), were selected to participate. The smaller number was appropriate for this design as it allowed for providing in-depth interactions to determine the feasibility of the process (Morris & Rosenbloom, 2017). States had to have chronic absenteeism covered in their ESSA plan and had to have healthcare providers with ME/CFS expertise to be considered for inclusion. It was important that these local experts were available as resources to students identified with ME/CFS-like symptoms. Additionally, to test acceptability of the process in various settings the sites encompassed diversity in several areas including: regions of the country, urbanicity, socioeconomic status, SN experience with data collection methods for chronic absenteeism, use of different school nursing models (e.g., direct employment of school nurses and contracting school nurses from local health departments), and different levels of schools (e.g., elementary, middle, and high schools). Once states were identified, the project team purposefully approached districts in those states. Once the district agreed to participate, the district leaders determined the nurse who would pilot the SBAS process.
The stepwise SBAS process was developed, based on the nursing process, best practices for chronic absenteeism (Arimas-Macalino et al., 2019), ME/CFS (CDC, 2018; Friedman et al., 2018), and management of students with chronic conditions (McClanahan & Weismuller, 2015; NASN, 2019). The SBAS process utilized the commonly accepted definition of chronic absenteeism: more than 10% of a school year, or more than 2 days per month (Bauer et al., 2018). The process included eight steps, which followed the nursing process (Table 1) and provided guidance to SNs to identify and address the root causes of chronic absenteeism (see Figure 1). Using ME/CFS as an exemplar, each step had targeted questions to assist SNs in identifying students at risk for undiagnosed conditions. The questions included identifying how long a student has been absent and if a condition is undiagnosed, identifying common symptoms of ME/CFS (e.g., inability to perform usual activities associated with extreme fatigue, post-exertional malaise, cognitive impairment, dizziness, and lightheadedness). The SBAS process was reviewed by experts in chronic absenteeism, ME/CFS, and school nurses who advised the project. The experts reviewed the process for clarity and alignment with best practices.
After receiving approval from the institutional review board (IRB), as well as CDC to assure consistency with applicable federal law and CDC policy, school districts and SNs were approached and signed consent to participate. Site visits were conducted by the project lead, a nursing scientist with expertise in school nursing and data. During the site visit, the district lead and SN were trained in the SBAS process, ME/CFS, and required data collection elements. The training included case studies to help assess the SN’s understanding of the SBAS process. During the site visit, the project lead and pilot nurse also discussed: 1) how to collect and report data and sample tracking forms; 2) how districts currently collected chronic absenteeism and what steps were needed for school nurses to have access to the data. Each district collected absences differently. Some schools tracked specific reasons, while others did not. Together they identified solutions to obtaining the data. Some districts worked with their technology department to gain access to absenteeism data; others worked with schools or districts to start asking for the reason for being absent. Certain schools utilized attendance officers, who contacted absent students, identified the reasons, and provided the nurse with a list of students chronically absent for health reasons. The training occurred with only two months left in the 2018-19 school year. This allowed SNs to pilot the SBAS process for a short time so that tweaks could be made as needed during the summer. During the remaining two years (i.e., 2019-2020 & 2020-2021), monthly community of practice calls with all SNs and the project lead were conducted to answer any questions and provide additional trainings.
Data collection utilized quantitative and qualitative components. Quantitative data collection involved school nurses tracking their chronic absenteeism data and activities using their current documentation system. Deidentified, aggregate data were collected quarterly (December, March, and June) between April 2018 and June 2021 using Qualtrics, an online software that uses data encryption, perimeter defense, and high-end firewall systems to meet security standards. The reported quantitative data included 5 categories: 1) Number of chronically absent students; 2) Number of chronically absent students due to health concerns; 3) Number of parental outreach attempts; 4) Reasons for chronic absences (including symptoms related to ME/CFS e.g., overwhelming fatigue, dizziness/lightheadedness/postural orthostatic tachycardia syndrome (POTS)); and 5) Nursing interventions performed. These data points were selected because they coincided with the steps of the SBAS and included symptoms of ME/CFS. SNs reported data for only the last two months of the 2018-2019 school year. During the June focus group, the participants’ greatest concern was the amount of time spent collecting data points. Since the focus of the project was a feasibility and not an intervention study, data points were modified so that less detail was needed. Examples of this modification included: not tracking the mode of every missed attempt to contact parents (e.g., phone call, in-person), the unique reasons for absences by type of student (e.g., grade level), or the particulars of referrals to healthcare providers. These changes reduced the reporting burden and kept the focus on the process. Data collection for the 2019-2020 and 2020-2021 school years was greatly impacted by mandatory school closings due to the COVID-19 pandemic.
In addition to quarterly reporting, qualitative data collection involved face-to-face focus groups of the participating SNs conducted in June 2018 & 2019 and individual interviews with school nurses conducted in the 2019-2020 and 2020-2021 school years. The qualitative information included feedback and experience sharing from the pilot SNs for the SBAS process, as well as questions for the district leads related to the impact of the SBAS process on district processes and resources. During the interviews, the project lead could ask for additional information as it related to feasibility. Due to the COVID-19 pandemic, half of the interviews in 2019-2020 were conducted virtually and all were virtual in 2020-2021. School District Leaders (e.g., nurses, social workers, or physicians) also provided input on the surveillance process during site visits (e.g., the ease of use, outcomes of the process, and unexpected consequences) and in June of each project year via email exchanges or phone calls, according to their preference. Examples of the qualitative questions for the face-to-face focus groups include: “Tell me about your experience working with students/families in identifying health concerns,” and “How well did the tool guide your practice?”
Descriptive statistics were reported for frequency and trends of quantitative data. Qualitative data from the focus group and interviews were reviewed, and segments were organized into categories or codes in an iterative process that resulted in common themes (Miles & Huberman, 1994). The initial coding focused on the specific objectives of the study, while subsequent rounds looked for other commonalities. Due to the small sample, no analysis software was used. To increase the credibility and reliability of the data, a second project team member provided an audit check of the results. Member checks were conducted with individual SNs in the 2019-2020 and 2020-2021 school years, with the May community of practice calls including a group member check to assure results reflected experiences.
Table 2 outlines characteristics of the pilot sites (n = 6). These sites included students from a range of ages (grades) and socioeconomic status. In half of the pilot sites, the school nurse covered multiple schools, although they implemented the SBAS process in only the school involved in this project. The original plan was to expand to more schools in the final year, but the COVID-19 pandemic did not allow this expansion.
Table 3 indicates the number of students who were chronically absent and reasons for their absences. A total of 2,301 chronically absent students were counted over the project period (2018–2021) with 28% (646/2301) of the absences due to student or family health concerns. Mental health, asthma/respiratory, and family reasons were the main causes of chronic absences in the schools, with COVID-19 as an additional cause during the 2020-2021 school year. Only 12% (286/2301) of chronic absences represented students who were newly defined as being chronically absent for health reasons for a particular month versus those who were chronically absent for health reasons for multiple months within a reporting quarter. These new cases often were due to influenza or other acute illnesses and alerted SNs to augment infectious disease prevention measures. While the SNs referred four students for ME/CFS-like symptoms to local healthcare providers, these children ultimately were not diagnosed with ME/CFS, as their symptoms were attributed to other health conditions.
The qualitative data lends additional insight into the acceptability and feasibility of the SBAS process. SNs in each site indicated the process was easy to follow and could be integrated into the normal workflow of SNs. The SNs felt that with additional time to assess students and an increase in the number of schools involved, the SBAS process could successfully help them identify students who should be evaluated for possible ME/CFS, especially since the process had helped them identify other conditions and situations that would not have come to their attention otherwise. The SNs indicated that although they did not find any student with ME/CFS, having increased knowledge about the condition was helpful. Many of the SNs were unaware of ME/CFS before the pilot program was offered.
The amount of time needed for outreach and intervention depended on the severity of the situation, the number of students, and how much the SNs could integrate steps into other responsibilities. It took 1–45 h for the SNs to contact families and the same amount to address the health concerns. Many of the issues identified involved the SNs connecting families with needed community resources or other personnel to resolve the issue identified by the SBAS process. The SNs and district leads both indicated that following the process did take time, which meant not doing other SN activities.
Other themes from the interviews and focus groups were particularly helpful in understanding what increased the likelihood of success. These lessons included: 1) Focused outreach and increased awareness; 2) Relationship building and empowerment.
Focused Outreach and Increased Awareness. SNs reported that tracking chronic absences monthly and reporting quarterly helped identify students at risk and increased awareness of conditions and factors that impacted their students’ education. The SBAS process successfully guided their actions in identifying students who needed additional outreach and in asking specific questions to determine the root cause of a concern. For example, although acute illness would seem to be the initial explanation for chronic absence, further investigation determined that mental health or social determinants of health were underlying concerns that needed to be addressed.
Focus group discussions among SNs from different sites uncovered how the targeted assessment led to interesting findings. For example, SNs noticed an increase in the number of absences at the beginning of the school year due to asthma. This was particularly surprising at a time when allergen triggers/asthma tend to be lower. On further investigation, SNs noted when students transitioned to a new school or classroom, the asthma symptoms worsened. This knowledge alerted the school nurses to provide enhanced asthma surveillance and education during times of transition that are potentially stressful triggers for asthma exacerbations.
The SBAS process was also effective in identifying undiagnosed concerns. For example, one SN assisted a family whose student was suffering from the impact of a concussion months after the event. Using the eight steps in the SBAS process, along with her nursing expertise, the SN attributed the onset of the student’s symptoms to the concussion months earlier and referred the family for additional healthcare.
Relationship Building and Empowerment. Relationships and empowerment were key to the success of the SBAS process. First, was the relationships with families. SNs found asking phrases such as, “How can I support you?” was effective in building trust with families. Trust was critical to learning the underlying concerns of students and families and led to more meaningful exchanges that uncovered the true circumstances surrounding school absences.
The second significant relationship in the process was between SNs and SN leadership. Being supported by district leaders in managing the time and effort required to implement the SBAS process was critical. In order to be sustainable, a cultural shift was needed where SNs were empowered to prioritize their time for the SBAS process. In some districts, additional SNs would need to be hired to adequately meet all the students’ needs. District SN leaders felt showing data from the SBAS process would provide them with the evidence needed to request additional SN positions.
Third, was establishing relationships with school leadership, including principals. This was essential as school leaders establish the culture and priorities of the school. The SBAS process was most successful when school-wide efforts reinforced attendance. This included having systems in place to track absenteeism and other personnel who reinforced attendance and absenteeism. For example, in schools where students changed classes each period, attendance was not tracked effectively unless the principals reinforced tracking. Sending letters home at the beginning of the school year explaining the approach also increased family understanding.
Participating in the SBAS process empowered SNs in several ways. SNs were empowered to prioritize their time for the SBAS process, allowing them to become an integral member of the school team and more visible to other school staff. An outgrowth of this process included several SNs being invited to be part of school attendance teams, as well as building stronger relationships with school counselors, attendance officers, and secretaries. Along with the increased collaboration, each member of the school team learned more about what other members did to address school absences, and this reduced duplication of effort. These relationships proved particularly helpful with the onset of COVID-19, which required the SNs to focus more on COVID-related activities. Because of the relationships and collaboration with other school team members, the initial triaging of students who were chronically absent was continued by others, allowing the SNs time to focus more on the nursing roles of interventions and health outreach.
Our assessment demonstrated that the SBAS process is an acceptable and feasible tool for identifying students at risk for chronic conditions. Although no students with undiagnosed ME/CFS were found, the process did enable SNs to uncover other physical and mental health concerns and social issues that adversely impact students’ health, wellbeing, and education. With the large variation (0.10–0.75%) in the point estimates of ME/CFS prevalence in children, we would have expected to identify students with ME/CFS. Among a total of 2,301 chronically absent students were counted over the project period, we would expect to have 0–9 students potentially reporting ME/CFS in consideration of the 95% confidence interval of 0.10% point prevalence estimate. Although the four students identified with ME/CFS-like symptoms were referred to physicians for further evaluation, ultimately they were confirmed with other conditions, not diagnosed with ME/CFS. The large variation in prevalence was one of CDC’s reasons for evaluating the SBAS process and improving school-based surveillance on ME/CFS. This process allowed school nurses to actively screen and refer students to their healthcare providers for evaluation of their health problems, including ME/CFS. The COVID-19 pandemic may have also impacted the SNs’ ability to identify students due to overlapping symptoms and narrowed bandwidth of students, parents, and SNs. As more sites are added, the likelihood of finding ME/CFS cases may increase.
The project strongly suggests that there is a role for SNs in addressing chronic absences. The study also reinforces that stress and anxiety, even before the pandemic, are common causes of absenteeism and that physical and mental health are intertwined. The role of the SNs is to focus on the whole student (CDC, 2014; Jacobsen et al., 2016; Kilfoy, 2020; Schroeder et al., 2018). SNs must proactively identify students at risk, investigate to identify the root concerns, and address issues early (NASN 2016; 2020b).
The results further support past work indicating efforts to decrease chronic absenteeism must be part of a larger schoolwide effort that requires administrative and school support (Balfanz & Byrnes, 2018; Bauer et al., 2018). SNs in this project were most successful when they had support and were included as part of the school team. This in turn empowered SNs to feel valued and seen. Proactive tracking of data to assist SNs in identifying students at risk had been previously underutilized.
Details on the eight steps of the SBAS process, along with resources and the lessons learned from this study were used to create the School Nurse-Led Active Surveillance Manual (Manual) so that all SNs can utilize the process (NASN, 2020b). The SBAS provides SNs guidance that would allow them to participate in NASN’s (n.d.) data initiative, National School Health Data Set: Every Student Counts (ESC)! The ESC! initiative focuses on a key public health role of collecting and using accurate data to determine local needs and to measure the magnitude, changes, or trends of a condition in the population (Roush, 2017; Groseclose & Buckeridge, 2017). The data collected by SNs using the SBAS can be a valuable source for better understanding of the prevalence and impact of chronic conditions on school-age children, including less-recognized conditions such as ME/CFS. The ESC! initiative also includes universal definitions so that school nurses collect data the same way and can voluntarily submit their de-identified, aggregate data into a national database (Maughan et al., 2018; 2021). Currently, minimal data are collected in schools on the school-age population. ESC! data has the potential to provide rich student data to better understand the population, as well as to advocate for policy changes to better serve students.
SNs’ knowledge gain in facilitating an ME/CFS diagnosis could be critical in future work on the school-based active surveillance of rare and emerging conditions. Recent research indicates that many symptoms of Long COVID overlap with those seen in patients diagnosed with or experiencing ME/CFS (Roesler, et al., 2022); thus this assessment and subsequent data tracking system may also provide insight for understanding the educational needs for students experiencing long-term effects of COVID-19 and the impact of the pandemic.
There were many strengths to this project. The SBAS process was well-received and broad enough to apply in schools and districts with different staffing, documentation, and populations. The process was found to identify undiagnosed conditions. Limitations include the sample size was small, and COVID significantly impacted the project’s ability to expand to more schools, districts, and states. The nature of qualitative research and small sample sizes is that the findings may not be generalizable, although the development of the Manual (NASN, 2020b) will allow SNs to adapt to their local school needs. Future research is needed that focuses on outcomes of the SBAS process as an intervention. Further work is also needed to determine which data points will be most helpful in identifying students earlier.
The SBAS process can be viewed as a model for SNs in establishing a surveillance system to identify emerging and priority needs in their schools. All SNs are invited to review the Manual and follow the SBAS process in their schools. SN can also utilize the Manual and results of this assessment to advocate for policies that will better identify and assist students who are chronically absent. Educating SNs on emerging conditions such as ME/CFS as well as the SBAS process enables school nurses to function at a higher scope of practice, while illustrating their role as integral members of the school support team.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention (CDC).
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Center for Emerging and Zoonotic Infectious Diseases, (Contract # 75D30118C03361).
Erin D. Maughan https://orcid.org/0000-0002-0176-1499
Jin-Mann S. Lin https://orcid.org/0000-0001-8286-6593
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Erin D. Maughan, PhD, RN, PNHA-BC, FNASN, FAAN served as the Director of Research for National Association of School Nurses (NASN) until Aug 2021. She is currently the Executive Director of the Center for School Health Innovation & Quality and an Associate Professor at George Mason University.
Mary E. Thompson, PhD, RN, CPNP-PC served as the Director of Research for NASN through the conclusion of Phase 1 of the School-Based Active Surveillance project.
Carol A. Walsh, PMP serves Chief Operating Officer for NASN and portfolio manager throughout Phase 1 of the School-Based Active Surveillance project.
Anindita Issa, MD serves as a Medical Officer at Centers for Disease Control and Prevention (CDC) and the primary technical monitor for Phase 1 of the School-Based Active Surveillance project.
Jin-Mann S. Lin, PhD serves as the team lead for Epidemiology, Data Management, and Analysis at CDC and the secondary technical monitor for Phase 1 of the School-Based Active Surveillance project.
1 National Association of School Nurses, Silver Spring, Maryland, USA
2 Change Healthcare, Gloucester, Massachusetts, USA
3 National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia, USA
Corresponding Author:Jin-Mann S. Lin, National Association of School Nurses, Silver Spring, MD, USA.Email: dwe3@cdc.gov