The Journal of School Nursing2024, Vol. 40(2) 174–188© The Author(s) 2021Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/10598405211053266journals.sagepub.com/home/jsn
Background: Adolescents and young adults (AYA) with chronic conditions should acquire self-management skills as part of their healthcare transition (HCT) from pediatric to adult-focused care. HCT/self-management skills have the potential to help mitigate health disparities among minority AYA with chronic conditions. This study investigated school nurses’ practices promoting HCT/self-management skills in urban public schools. Methods: Seventy-nine nurses from three urban school districts in Massachusetts completed a survey of 32 Likert-type questions on HCT/self-management skills, eight demographic questions, and five open-ended practice questions assessing how often they have asked students with chronic conditions about HCT/self-management skills, based on the UNC TRx ANSITION IndexTM. Results: Among the 79 school nurses who participated (response rate 76%), 67% never or rarely assessed students’ knowledge of HCT/self-management, and 90% would use a tool that promotes/measures HCT/self-management skills. Conclusion: In our study sample, most school nurses acknowledged the importance of assessing HCT/self-management skills. The majority favored using a tool to promote these skills.
Keywordsadolescents, young adults, chronic conditions, urban schools, school nurses, self-management, healthcare transition
The landscape of school nursing practice in advancing the health of school-age children is changing (Johnson, 2019). Advances in the diagnosis, detection, and treatment of chronic conditions have contributed to an increasing number of children and adolescents receiving specialized nursing care at school (Betz, 2013; Compas et al., 2012; Hardin & Hackell, 2017; World Health Organization, 2018). In the United States, approximately 132,300 school nurses care for nearly twenty million children, adolescents, and young adults (11 to 21 years) with at least one chronic condition (Price et al., 2013; Sentell, 2020; Willgerodt et al., 2018).
Chronic conditions in school-age children include type 1 and type 2 diabetes, sickle cell disease, cerebral palsy, asthma, cancer, cystic fibrosis (Lozano & Houtrow, 2018; NASN, 2019). Additionally, studies suggested that racial/ethnic minority children had a higher prevalence of all chronic diseases compared to children of Caucasian descent, with Hispanics and African Americans bearing disproportionate burdens of some of these chronic conditions (Kitsantas et al., 2013; Price et al., 2013). Childhood-onset chronic conditions require continuous care and services from different disciplines as these conditions may persist over a lifespan, interfering with everyday life (Compas et al., 2012; Goodman, 2013; Martin, 2007; Modi et al., 2012; Van Cleave et al., 2010).
The management of pediatric-onset chronic conditions is challenging and can put strenuous demand on adolescents and their families (Compas et al., 2012; Lozano & Houtrow, 2018). Moreover, managing chronic conditions is exceedingly difficult for ethnic minorities, Indigenous people, and low-income families overwhelmed by the effects of poverty, disparities, inequity in care access, and competing cultural views (Basch, 2011; Ehrlich et al., 2016; Greenhalgh et al., 2011). Several studies found that African-American and Hispanic adolescents from lowincome families had a higher incidence of asthma, less parental support, lower adherence to medication, disparities in medical access, lower levels of parental literacy, difficulty understanding health information, and increased use of services from emergency departments (Basch, 2011; Manganello & Sojka, 2016; Price et al., 2013; Thakur et al., 2014). Furthermore, the COVID-19 pandemic most certainly, highlighted the vulnerabilities of ethnic minorities and low-income families with chronic health conditions (Langmaid et al., 2020).
Moreover, members of minority groups tend to have lower levels of health literacy, and low levels of health literacy affect health outcomes, particularly among racial and ethnic minorities with chronic conditions (Jacobs et al., 2017). Low levels of health literacy were associated with (1) limited use of specific health services, (2) poor adherence to preventive health screenings, (3) difficulty understanding medications, and (4) poor health outcomes (Berkman et al., 2011; Liechty, 2011; Rasu et al., 2015). In contrast, higher levels of health literacy were found to be essential for developing health knowledge, successful health communication, and navigating the healthcare system (Manganello & Sojka, 2016). Nonetheless, studies shown that AYA struggle with health literacy skills with 44% of 9th graders reading at least two grades below the expected health literacy levels and 77% showing inadequate or marginal health literacy skills. Most importantly, low health literacy in urban high-school students was associated with (1) difficulty understanding health information, (2) unhealthier diet, (3) greater engagement in unsafe sexual behaviors, and (4) greater increase in substance use (Manganello & Sojka, 2016; Park et al., 2017).
Chronic health conditions combined with the challenges associated with social determinants of health (SDOH), such as poverty, low literacy, and low socioeconomic status, present overlapping difficulties for AYA with chronic conditions (Basch, 2011; Liberatos et al., 2013; Lozano & Houtrow, 2018; Thakur et al., 2014; Thakur et al., 2016). For example, families from impoverished urban neighborhoods may be unaware of how to access critical health services, such as, specialty doctors, treatment clinics, medical equipment, which may contribute to health outcomes disparities (Basch, 2011; Liberatos et al., 2013; Martin, 2007; Price et al., 2013; Sentell, 2020; Thakur et al., 2014; Thakur et al., 2016). Furthermore, physiological changes of puberty and the need for autonomy in adolescents can negatively influence treatment adherence (Blackwell et al., 2019; Chao et al., 2016; KyngÄs et al., 2000). AYA with chronic conditions need skills, knowledge, frequent support, guidance, encouragement, and positive feedback to create proper routines for health self-management (KyngÄs et al., 2000; Strand & Haugstvedt, 2019).
Research indicates that access to school nurses and selfmanagement education in the school setting can strengthen the ability of AYA with chronic conditions to understand basic health information, which may positively affect health outcomes (Blackwell et al., 2019; Chao et al., 2016; de Buhr et al., 2020). Self-management is defined as an individual’s ability to manage a chronic condition by engaging in specific health behaviors when living with the illness. Self-management education helps individuals develop skills, medication adherence, symptoms monitoring, and building capacity to navigate challenges associated with a chronic condition (Grady, P. A. & Gough, 2014; Lozano & Houtrow, 2018; Meadows-Oliver & Allen, 2012). In school, health self-management is a collaboration among AYA, parents, and health providers (Lozano & Houtrow, 2018). Moreover, self-management models show potential as a practical paradigm across the prevention spectrum: primary, secondary, and tertiary (Grady & Gough, 2014). Self-management models also recognize the developmental trajectory across adolescence: (1) early ages 11–14 years, (2) middle ages 15–17 years, and (3) late ages 18–21 years (Hardin & Hackell, 2017; Lozano & Houtrow, 2018). Millions of AYA with chronic conditions, in all three stages of adolescence, are at-risk for negative life experiences correlated with poor school attendance, depression, anxiety, low self-esteem, non-adherence to treatment, and risky behaviors (YRBS/CDC), 2019; Blackwell et al., 2019; Engelke et al., 2009; Liberatos et al., 2013; Price et al., 2013; Sentell, 2020). Blackwell et al., (2019) endorse a positive-health perspective in the context of chronic illness that promotes strengthening abilities of AYA to live optimally, adapt to environmental challenges, and attain life goals (Blackwell et al., 2019). Managing a chronic health condition is a confusing and challenging task for adolescents while trying to understand their roles and responsibilities toward becoming independent in handling their healthcare needs (KyngÄs et al., 2000). The National Association of School Nurses 21st Century Framework challenges school nurses to promote students’ self-empowerment by helping them to realize their abilities over their healthcare needs (Maughan et al., 2016).
School nurses are trusted health professionals at the intersection of three major systems: home, school, and the medical community (Brady et al., 2021). As expert clinicians, school nurses are ideally positioned to support evidence-based and cost-effective healthcare transition (HCT)/self-management models for AYA with chronic conditions to help them acquire the skills and knowledge that support their health (American Academic of Pediatrics, 2016; Leroy et al., 2017; Liberatos et al., 2013; McCabe, 2020; Sheetz, 2012). For example, blood glucose communication systems using wireless monitoring have been piloted between school nurses, AYA, their families, and endocrinologists to improve hemoglobin A1C for poorly controlled type 1 diabetes mellitus (Nguyen et al., 2008; Sheetz, 2012). Similarly, school nurses have supported asthma selfmanagement, especially in higher-risk school districts with children experiencing poorly controlled asthma (McCabe, 2020; Sheetz, 2012; Willgerodt et al., 2018). Willgerodt et al. (2018) refer to school nurses as a “hidden health care system for children,” often the only consistent contact for AYA who might have limited access to health care (Leroy et al., 2017; Willgerodt et al., 2018).
In its “Framework for Twenty-First Century School Nursing Practice,” the National Association of School Nurses (2019) recognized students’ centered-care to include students as decision-makers in their health needs. According to NASN (2017), the school nurse’s role in caring for students with a chronic condition is to optimize student health, safety, and learning. Reports by NASN (2017), the American Academy of Pediatrics Council on School Health (2016) highlight that school nurses are vital members of the K-12 school community. The “Every Student Succeeds Act” (2015) identifies school nurses as “leaders of student chronic disease management in schools” (National Association of School Nurses, 2017).
Effective and safe management of chronic conditions varies depending on the AYA cognitive ability, level of social support, and the type of chronic condition (Grady, K. L. et al., 2021). Section 504 of the Rehabilitation Act of 1973 (Pub L No. 93-112) recommends schools provide services designed to meet the educational needs of students with health impairments that affect learning in schools, including services that prepare students for after they leave schools (Betz et al., 2019). School nurses are instrumental in providing accurate interpretations of students’ health conditions and developing Individual Health Plans to ensure that appropriate school accommodations address students’ health needs in the school setting (NASN, 2018). NASN posits addressing students’ health care beyond the school setting is central to school nursing practice (NASN, 2019). Nevertheless, there currently exists a gap in training and tools to support school nurses as HCT/self-management champions for AYA with chronic conditions (Díaz-González de Ferris, Maria E et al., 2017; Engelke et al., 2009; Lozano & Houtrow, 2018; McCabe, 2020). While there are disease-specific self-management tools (e.g., Diabetes carbohydrate counting, Asthma Action Plans, Food Allergy Action Plans); valid disease neutral instruments are needed to assess mastery of HCT/self-management skills among AYA with chronic conditions (e.g., knowledge of medications, nutrition, and adherence) so that school nurses do not depend solely on the AYA’s self-report.
Disease-neutral tools can guide culturally and linguistically appropriate self-management interventions to build the capacity for AYA to solve problems and navigate healthcare challenges (Lozano & Houtrow, 2018). Research is needed on how school nurses can effectively assess HCT/ self-management skills among AYA with chronic conditions. This study explored the extent to which school nurses promote HCT/self-management skills for AYA with chronic conditions in urban public schools. The following research questions guided the study:
(1) To what extent do school nurses promote HCT/selfmanagement skills among AYA with chronic conditions in urban public schools?
(2) Will the format of the UNC TRx ANSITION Index™ help measure and promote HCT/ selfmanagement skills for AYA with chronic conditions in urban public schools?
The study employed a cross-sectional exploratory survey using a purposive sample of middle- and high-school nurses from three public urban school districts in the northeastern region of the United States. In purposive sampling, participants are selected based on the researcher’s knowledge of who might be more helpful in providing the best information for the study (Polit & Beck, 2017). The study received expedited IRB approval from Regis College, Weston, Massachusetts.
The participants were recruited by reaching out to nurse leaders from the school districts of interest via an email solicitation. We used the school district’s email listserv to send the link to the survey, including the informed consent for voluntary participation to school nurses working with AYA in grades 6th to 12th. We excluded nurses working as substitutes, provisional or per-diem, nurses working in private schools, suburban districts, elementary grade levels, and school nurses who participated in the survey questions’ pilot test.
The study used the UNC TRx ANSITION Index™ version 3 (Cantú-Quintanilla et al., 2015; Díaz-González de Ferris, Maria E et al., 2017; Ferris et al., 2012), a provideradministered/verified, disease-neutral questionnaire that measures HCT/self-management skills among AYA with chronic conditions. The UNC TRx ANSITION Index™ version 3 questionnaire was adapted for relevance in a school setting. A team of doctoral-prepared nurses in academia and school health reviewed the adapted questionnaire to provide content validity. The adapted questionnaire was then sent to the original authors to review further and establish external validity (Polit & Beck, 2017). The final survey consisted of 32 close-ended Likert-type questions on HCT/selfmanagement skills (Table 1), eight demographic questions, and five open-ended nursing practice questions to gather participants’ perceptions and experiences promoting HCT/ self-management for AYA with chronic conditions (Table 2).
The five open-ended practice questions were included as complementary to accentuate the survey results. The final questionnaire was piloted with a group of school nurses similar to the population of interest to establish the relevance of the questions, clarity of the instructions, and the amount of time it would take to complete the survey (Bell & Waters, 2018). Data were collected from May 2018 to June 2018. An email reminder was sent to the nurses in early June 2018 to help increase the participation rate (Polit & Beck, 2017). The survey questionnaire was distributed electronically to approximately 190 school nurses through Survey Monkey Premiere, which offers an “Anonymous Responses Collector” feature. The survey took roughly 10-15 min to complete.
We exported the data from Survey Monkey Inc. into Excel. The raw data were cleaned by removing Survey Monkey’s specific identifier data such as timestamps, row, and column headers. We inspected the data further for completeness, consistency, and pattern of missing values. The webbased survey completion rate was 76%. We removed missing responses selectively on a variable-by-variable basis by means of pairwise deletion, bringing the number to 106 participants (Polit & Beck, 2017). Participants who did not meet the inclusion criteria and/or did not complete at least 50 percent of the questions were removed. The study sample was further reduced to N = 79. The clean data file was then imported into SPSS software version 25.0 for further statistical analysis. Demographic and survey data were analyzed using descriptive statistics, percentages, and mean rank. Mean rank is a calculation conversion across groups to ascertain which group may have an impact on addressing HCT/self-management skills.
The Likert scales were transformed into two groups: 1- (Always and Usually), 2- (Sometimes, Rarely, or Never). The non-parametric Mann-Whitney U test compared the differences between the groups using the Likert scale above. Mann-Whitney is used with continuous level variables. Since the dependent variable for the study was not normally distributed, and there was no equal variance on the scores across groups, the data fit the Mann-Whitney U test’s assumptions. The data did not rely on the normality of the sample collection method. The significance level for each test was set at α = 0.05. For the quantitative analysis, the text responses were transformed into numerical values to facilitate the classification of responses. For the qualitative data, we utilized a thematic analysis to identify similarities and patterns within the open-ended responses, divided and coded the responses according to emerging themes or categories (Polit & Beck, 2017)
Participants’ characteristics included years of experience as a nurse, years of experience as a school nurse, grade level of practice (high school vs. middle school), and workload (such as the number of students assigned and nurses who are assigned to more than one school). Out of the 79 participants, 78 self-classified as females. Participants were asked to indicate their education level: 46.8% BSN, 12.7% RN, 22.8% MSN, 11.4% MEd, APRN 3.8%, and Doctorate 2.5%. Half of the participants (50.6%) had been nurses for over 25 years, and the mean number of years as school nurses was 16 years. Participants’ workload assignment varied from < 99 students to > 1,500 students across grade levels: K-8, middle, and high schools (Table 3). It is noted that the participants’ totals were higher than the number of participants who completed the study (N = 79). The structure of the survey questionnaire explains the discrepancy, which is due to the overlapping grade levels between K-8 and Middle/Junior High configuration. Technically, Middle/Junior High is a cohort of K-8, and the survey questionnaire did not consider the overlapping structure of the K-8 grade level. The survey results revealed that nurses who worked with K-8 tended to check both K-8 and Middle/Junior High levels.
All participants (100%) indicated that they had students with chronic conditions. Participants were directed to describe the level at which they promoted HCT/self-management skills for AYA with chronic conditions from the following choices: (Never, Rarely, Sometimes, Usually, and Often). Of the respondents, 64% to 70% rarely or never addressed specific skills related to HCT/selfmanagement skills. When it comes to assessing students’ knowledge relating to reproductive health, setting up a clinic appointment, calling for a medication refill, understanding health insurance, and when to transition to a new healthcare provider; 64% to 70% of the participants reported that they never or rarely assess students’ knowledge about those skills. The results presented in (Figure 1) illustrate in percentages the number of nurses who assessed students’ knowledge about the nine selfmanagement constructs identified in the UNC TRxANSITION Index that categorized specific knowledge AYA with chronic illness need to acquire to manage their healthcare needs independently.
Research Question 1. To what extent do school nurses promote self-management transition skills for AYA in urban public schools? The data was split in various ways to look for significance between different groups based on AYA grade level, the education of the nurse, level of experience as a school nurse, nurse workload, and if the nurse was assigned to more than one school. The mean rank indicates which group asked more questions about selfmanagement skills. The larger the mean rank, the more often those respondents asked self-management skills questions.
When comparing the different groups pertaining to the school nurse’s level of education, as shown in Table 4, the higher the education level of the participant, the higher the mean rank showing significance when addressing specific HCT/self-management skills such as medication, insurance info, and contacting doctor. When comparing the different groups based on the school nurse’s workload, as shown in Table 5, the data show statistical significance based on the number of students or if the nurse covers more than one school. When stratifying responses by years of school nursing experience, Table 6 illustrates the differences between the two groups. The mean rank between the groups did not show statistical significance about addressing HCT/self-management skills for AYA with chronic conditions. The promotion of HCT/self-management skills was compared among participants working in different grade levels: high school vs. non-high school. The mean rank for nurses working in high schools is higher than of nurses working in other grades and shows statistical significance for questions that focused on knowledge about medications, self-management skills, reproductive health, health insurance, and long-term management as an adult (Table 7).
Research Question 2. Will the availability of a selfmanagement tool help promote self-management transition skills for AYA in urban public schools? Over 90% of the respondents said they would use a tool to encourage HCT/ self-management skills for AYA with chronic conditions (Figure 2). Across the spectrum of school sizes, most respondents favored the use of such a tool. The study further explored how the respondents who indicated that the tool would be helpful answered the survey questions compared to those who did not want a tool. The two groups showed no significant difference in the frequency in which the respondents addressed HCT/self-management skills in AYA with chronic conditions.
To gather participants’ perspectives regarding potential barriers that impeded school nurses’ ability to promote HCT/ self-management skills for AYA with chronic conditions, we asked the following open-ended question: “Name one barrier that could prevent you from promoting selfmanagement transition skills for AYA with chronic conditions.” The goal was to obtain individual viewpoints about the nurses’ experiences addressing self-management skills for urban AYA with chronic conditions. This question generated 60 responses. A manual color-coded method was adopted for organizing the qualitative data. The open-ended responses were read multiple times. Keywords and phrases were highlighted using a different color for each theme and then categorized into common themes (Creswell, 2014). The emergent themes from the participants’ responses expressing the common barriers to addressing selfmanagement included:
(1) Lack of interest from the students (N = 17),
(2) Time constraints for the nurses and out-of-class time availability for students (N = 15),
(3) Language/socioeconomic status (N = 5),
(4) Parents’ understanding/approval/willingness (N = 5),
(5) Staffing ratio (N = 5).
Regarding lack of interest from the students, respondents shared their views through the following direct quotes:
“Students are not interested”
“Students’ lack of maturity and not taking their illness as lifethreatening, and not knowing when to seek adults support and supervision”
“Students are unmotivated to learn and understand their illness”
“Defiance from the student regarding care and unwillingness to self-manage”
“Students’ lack of cooperation/inconsistency for selfmanagement”
The second most common theme was time constraints for the nurses and out-of-class time availability for students expressed by the respondents through the following comments:
“Educators are desperate to maximize time on learning for academic subjects”
“Students are not encouraged to have scheduled learning time”
“The student to nurse ratio is too high to engage in meaningful conversation around health care”
“Inadequate staffing, I have to cover two schools…. even though all the students in both schools have an IEP”
The barriers created by language/socioeconomic status, parents’ understanding/approval, and staffing ratio were equally distributed at (N = 5) and expressed through the following phrases:
“Language barriers lack of interpreter staff”
“Family disorganization low socioeconomic resource community”
“Lack information from the family and providers”
Participants were asked to indicate if there was a standardized self-management policy at their school. While many participants indicated that they were aware of a policy, the majority responded that they did not have or did not know of a policy for addressing self-management readiness skills for AYA with chronic conditions. See Figure 3 for responses based on the caseload of the respondents.
Participants also expressed their perspectives pertaining to their practice for addressing self-management transition skills for AYA with chronic conditions. A selection of the direct quotes expressed by participants is listed in Table 8. The purpose of collecting the nurses’ viewpoints was to help enhance or clarify the study results and find meanings to the participants’ experiences and perspectives.
This novel study explored the extent to which school nurses promote HCT/self-management for AYA with chronic conditions in urban public schools. The data showed how experience, workload, and the number of schools served by the nurse influenced participants’ responses. The findings magnified issues consistent with previous literature regarding school nurses supporting HCT/self-management intervention at school. As noted in an earlier study, school nurses are predominantly female, with years of experience in school nursing ranging from 1 to 31 years; they are well educated, holding at least a baccalaureate degree (Best et al., 2018). Our study participants were predominantly females with a wide range of experience in school nursing and level of education ranging from a baccalaureate degree to doctorate level.
One of the most significant findings was how infrequently nurses were asking their AYA with chronic conditions basic questions about their health self-management. Our findings revealed that most nurses who care for AYA with chronic conditions in urban public schools never or rarely assess students’ knowledge about key concepts related to HCT/ self-management skills. As illustrated in the literature and per NASN’s position, adolescents with chronic conditions transitioning to adulthood should receive self-management and decision-making skills that foster active participation in maintaining and attending to their health needs (Davis & Paro, 2019; NASN, 2019). Furthermore, studies have highlighted gaps and inconsistencies in promoting HCT/selfmanagement for children with chronic conditions (Betz, 2021; Betz, 2013; McCabe, 2020).
Our findings accentuated that workload and time constraints are significant factors impeding self-management promotion at school. Nurses who cover more grades or more than one school were more likely not to engage in HCT/self-management skills teaching compared to nurses working with a single grade or in one school. Therefore, we wonder if a nurse workload distribution by student age groups would permit more specialized self-management education based on student development.
The participants expressed their perspectives through quotes such as “Lack of time- the nurse is very busy,” “Student to nurse ratio is too high to engage in meaningful conversation around health care,” “Inadequate staffing, I have to cover two schools.” These quotes suggest that nurses with a higher nurse-to-student ratio were less likely to engage in HCT/self-management education for AYA with chronic conditions. These findings are consistent with results from other studies (Best et al., 2018; Daughtry & Engelke, 2018; Hanley Nadeau & Toronto, 2016; Lozano & Houtrow, 2018; Schroeder & Smaldone, 2017) reporting that self-management interventions could overwhelm school nurses who are pressed for time.
This study also underscored lack of parental understanding and approval as factors hindering the promotion of HCT/self-management education, confirming other studies recognizing self-management as shared management between adolescents, parents, and/or caregivers (Lozano & Houtrow, 2018; Maughan et al., 2016; Modi et al., 2012).
This study examined if a tool that measures HCT/selfmanagement could help promote structured teaching of these skills by school nurses. The results showed that 90% of school nurses favored using a tool to support structured AYA self-management skills education. This finding supports other studies promoting using a disease-neutral tool or generic approach to teach and measure HCT/selfmanagement skills (Betz et al., 2014; Schwartz et al., 2014; van Houtum et al., 2015). A small number of nurses indicated that they would not use a tool to promote HCT/ self-management. Further analysis of those responses showed no indications that those nurses were engaged in any other self-management skills than those who indicated they would like to use the tool. When looking at the two groups in more detail, most nurses who indicated they did not want to use the tool also served in more than one school with higher student-to-nurse ratios. This finding further shows that nurses with a heavy workload and working in more than one school were more inclined to reject the use of a tool.
When comparing high-school nurses with non-high-school nurses, some responses, especially those related to reproductive health, knowledge about health insurance, medications, and finding an adult doctor, showed statistical differences. High-school nurses tended to engage in more HCT/selfmanagement education when compared to K-8 and middle school nurses. This finding may be because some of the questions were age-appropriate and more suited for older students. Our results were consistent with other studies, which recommended the utilization of readiness tools to assess patient’s ability to partake in education on HCT readiness skills (Cantú-Quintanilla et al., 2015; Ferris et al., 2012; Lebensburger et al., 2012)
Our study results may not be generalizable to suburban, private school settings, and rural school districts. The study sample N = 79 did not meet the recommended minimum of 100 participants for a cross-sectional survey study (Fraenkel et al., 2019). The overlapping grade configuration between K-8, Middle, and Junior high, resulted in discrepancies during the data aggregation. Other limitations refer to the base survey instrument, which was developed for AYA with chronic conditions. Future research is needed using tools to promote HCT/self-management skills education for school nurses in urban, suburban, and rural settings, as indicated by Betz 2021, to promote interdisciplinary collaboration with healthcare providers in clinical settings (Betz, 2021).
The National Association of School Nurses recognizes that children with chronic conditions in schools should have a coordinated and well-developed HCT plan that maximizes lifelong skills and well-being (NASN, 2019). This study is the first conducted by a school nurse that addresses the promotion of HCT/self-management transition skills for AYA with chronic conditions in urban public schools. This study adds to current knowledge in school nursing and the science of HCT/self-management by applying a standardized approach for promoting HCT/self-management skills for AYA with chronic conditions in urban public schools while helping to strengthen health literacy for vulnerable populations (de Buhr et al., 2020).
The National Institute of Nursing Research supports research that incorporates five areas of science, which include self-management of chronic illness (Anekwe & Rahkovsky, 2018). The National Academies of Sciences, Engineering, and Medicine 2021 report on The Future of Nursing 2020-2030: Charting a Path to Achieve Health Equity also recognizes that school nurses can play a vital role in advancing health equity for students with complex health needs and social needs (National Academies of Sciences, Engineering, and Medicine 2021, 2021).
Grady et al. (2021) highlights nurse-led methods of care that incorporated HCT interventions that include quality improvement projects in non-health settings such as schools (Grady et al., 2021). The HCT field of practice offers unlimited opportunities for nursing involvement, interdisciplinary collaboration, and the development of evidence-based models of care that support HCT nursing practice (Betz, 2021). School nurse leaders and administrators can influence policy development, negotiate for resources, training (McCabe, 2020) foster new ideas for integrating HCT/self-management/in students’ IEP, and 504-accommodations that support the health and education of AYA with chronic conditions. Integrating and implementing evidence-based HCT/self-management in nursing services that measure health outcomes may be reimbursable through Medicaid and help bring needed state and federal fund to school health services in urban school systems.
The American Association of Colleges of Nursing (AACN) recognizes that the future of “healthcare delivery will occur within four spheres of care, among which is the management of chronic diseases and prevention of adverse sequelae” (American Association of Colleges of Nursing, 2021). Therefore, school nurse leaders and administrators can collaborate with colleges and universities to open tremendous service-learning opportunities involving HCT/self-management evidence-based projects for entry-level and advanced nursing education. Furthermore, teaching self-management skills to urban AYA with chronic conditions from underserved communities can help nursing students gain valuable experience and appreciation for chronic disease management related to the individual health needs of vulnerable populations.
The increased prevalence of chronic conditions in school-aged children represents healthcare delivery challenges of the twenty-first-century school nursing practice. Along with chronic conditions, urban AYA from lowincome status and their families also carry extra burdens associated with social determinants of health (SDOH) such as low health literacy level, poverty, socioeconomic challenges, and other social and cultural factors that create barriers to effective HCT/self-management. In addition, adolescents may find it challenging to navigate through a confusing developmental stage, a health condition that threatens their identity, and a complex, multifaceted US healthcare system. These competing units are sometimes difficult to reconcile; consequently, this may result in rebellious attitudes, fragmentation of services, and poor HCT/ management preparation, leaving vulnerable AYA at risk for poor health outcomes.
This study has shown that while school nurses caring for AYA with chronic conditions are ideally positioned to support evidence-based HCT/self-management skills preparation, they would benefit from a tool designed for this purpose. School nurses acknowledge the importance of selfmanagement education; however, structural factors hindered their abilities to promote HCT/self-management skills for AYA with chronic conditions. Supporting AYA in building skills necessary to achieve competency in managing their health should be an integral part of nursing care delivery at school. Developing a tool to support HCT for AYA with chronic conditions will significantly add value and quality to school nursing practice.
The findings from this study exposed a gap and a lack of cohesiveness in promoting HCT/self-management skills for AYA with chronic conditions in urban public schools. Across the board, the study findings revealed a need for schools to support school nurses; provide them with both appropriate resources and a clear direction on promoting HCT/self-management skills for AYA with chronic conditions. The data from this study showed a need for a standardized approach using The UNC TRx ANSITION Index, a valid tool to promote HCT/self-management skills. It is also important to stress that for a tool to be beneficial, it must be age-appropriate; it must also consider parents and adolescents’ perspectives, the nurses’ workload, and the nurses’ time constraints. AYA spend more time in school, and urban AYA are at risk of health disparities and inequity in learning opportunities from poorly managed chronic health conditions. These facts necessitate a call to action to activate school health capacity to support HCT/self-management skills for AYA with chronic conditions in a public school setting.
The author offers her sincere appreciation to Dr. Mary D. Kelly, a member of her DNP scholarly project team, for her expertise and support and Jessica Finnegan for her help with the manuscript’s data analysis and technical editing.
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) received no financial support for the research, authorship and/or publication of this article.
Roselaine Charlucien-Koech https://orcid.org/0000-0002-0308-2262
Jacqueline Brady https://orcid.org/0000-0002-2748-1874
Supplemental Material for this article is available online.
AAP Council on school health Role of the School Nurse in Providing School Health Services. Pediatrics. 2016; 137(6): e20160852. https://doi.org/10.1542/peds.2016-0852.
American Association of Colleges of Nursing. (2021). Core Competencies for Professional Nursing Education. www.ninr.-nih.gov/nod/5572. https://www.aacnnursing.org/Portals/42/AcademicNursing/pdf/Essentials-2021.12-13.pdf.
Anekwe, T. D., & Rahkovsky, I. (2018). Self-Management: A comprehensive approach to management of chronic conditions. American Journal of Public Health, 108(Suppl 6), S430–S436. https://10.2105/AJPH.2014.302041r
Basch, C. E. (2011). Asthma and the achievement Gap Among urban minority youth. The Journal of School Health, 81(10), 606–613. https://10.1111/j.1746-1561.2011.00634.x
Bell, J., & Waters, S. (2018). Doing your research project: A guide for first-time researchers. McGraw-Hill Education.
Berkman, N. D., Sheridan, S. L., Donahue, K. E., Halpern, D. J., & Crotty, K. (2011). Low health literacy and health outcomes: An updated systematic review. Annals of Internal Medicine, 155(2), 97–107. https://10.7326/0003-4819-155-2-201107190-00005
Best, N. C., Oppewal, S., & Travers, D. (2018). Exploring school nurse interventions and health and education outcomes: An integrative review. The Journal of School Nursing, 34(1), 14–27. https://10.1177/1059840517745359
Betz, C. L. (2013). Health care transition for adolescents with special healthcare needs: Where is nursing? Nursing Outlook, 61(5), 258–265. https://10.1016/j.outlook.2012.08.009
Betz, C. L. (2021). Nursing’sinfluence on the evolution of the field of health care transition and future implications. Journal of Pediatric Health Care, 35(4), 408–413. https://10.1016/j.pedhc.2021.01.001
Betz, C. L., Ferris, M. E., Woodward, J. F., Okumura, M. J., Jan, S., & Wood, D. L. (2014). The health care transition research consortium health care transition model: A framework for research and practice. Journal of Pediatric Rehabilitation Medicine, 7(1), 3–15. https://10.3233/PRM-140277
Betz, C. L., Hudson, S. M., Lee, J. J., Smith, K. A., & Van Speybroeck, A. (2019). An exploratory study of adolescents and emerging adults with spina Bifida knowledge of their individual education program: Implications for health care transition planning. Journal of Pediatric Rehabilitation Medicine, 12(4), 393–403. https://10.3233/PRM-180578
Blackwell, C. K., Elliott, A. J., Ganiban, J., Herbstman, J., Hunt, K., Forrest, C. B., Camargo, J., & Carlos, A. (2019). General health and life satisfaction in children with chronic illness. Pediatrics (Evanston), 143(6), e20182988. https://10.1542/peds.2018-2988
Brady, J. A., Underhill-Blazey, M. L., Burke, P. J., Lee, C. S., Howard, E. P., & Duffy, L. V. (2021). Experiences of school nurses caring for newly arrived immigrant and refugee children. International Journal of Educational Reform, 3(4), 271–99. https://doi.org/10.1177/1056787921991512
Cantú-Quintanilla, G., Ferris, M., Otero, A., Gutiérrez-Almaraz, A., Valverde-Rosas, S., Velázquez-Jones, L., Luque-Coqui, M., Cohen, S., & Medeiros, M. (2015). Validation of the UNC TRxANSITION scale™version 3 Among Mexican adolescents With chronic kidney disease. Journal of Pediatric Nursing, 30(5), e71–e81. https://10.1016/j.pedn.2015.06.011
CDC. (2019). Youth risk behavior survey (YRBS). Centers for Disease Control and Prevention. https://ncvc.dspacedirect.org/handle/20.500.11990/1420.
Chao, A. M., Minges, K. E., Park, C., Dumser, S., Murphy, K. M., Grey, M., & Whittemore, R. (2016). General life and diabetesrelated stressors in early adolescents With type 1 diabetes. Journal of Pediatric Health Care, 30(2), 133–142. https://10.1016/j.pedhc.2015.06.005
Compas, B. E., Jaser, S. S., Dunn, M. J., & Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8(1), 455–480. https://10.1146/annurev-clinpsy-032511-143108
Creswell, J. W. (2014). Research design (fourth edition, international student edition ed.). Sage.
Daughtry, D., & Engelke, M. K. (2018). Demonstrating the relationship between school nurse workload and student outcomes. The Journal of School Nursing, 34(3), 174–181. https://10.1177/1059840517725790
Davis, E. S., & Paro, C. (2019). Preparing high school students with chronic illnesses for college transition: Lessons learned from college counselors. Professional School Counseling, 23(1), 2156759. https://10.1177/2156759X20907070
de Buhr, E., Ewers, M., & Tannen, A. (2020). Potentials of school nursing for strengthening the health literacy of children, parents and teachers. International Journal of Environmental Research and Public Health, 17(7), 2577. https://10.3390/ijerph17072577
Díaz-González de Ferris, M. E., Del Villar-Vilchis, M., Guerrero, R., Barajas-Valencia, V. M., Vander-Schaaf, E. B., de Pomposo, A., Medeiros, M., Rak, E., Cantu-Quintanilla, G., Raina, R., & Alvarez-Elias, A. C. (2017). Self-Management and health care transition Among adolescents and young adults With chronic kidney disease: Medical and psychosocial considerations. Advances in Chronic Kidney Disease, 24(6), 405–409. https://10.1053/j.ackd.2017.09.010
Ehrlich, C., Kendall, E., Parekh, S., & Walters, C. (2016). The impact of culturally responsive self-management interventions on health outcomes for minority populations: A systematic review. Chronic Illness, 12(1), 41–57. https://10.1177/1742395315587764
Engelke, M. K., Guttu, M., & Warren, M. B. (2009). Defining, delivering, and documenting the outcomes of case management by school nurses. The Journal of School Nursing, 25(6), 417–426. https://10.1177/1059840509347377
Ferris, M. E., Harward, D. H., Bickford, K., Layton, J. B., Ferris, M. T., Hogan, S. L., Gipson, D. S., McCoy, L. P., & Hooper, S. R. (2012). A clinical tool to measure the components of health-care transition from pediatric care to adult care: The UNC TRxANSITION scale. Renal Failure, 34(6), 744–753. https://10.3109/0886022X.2012.678171
Fraenkel, J. R., Wallen, N. E., & Hyun, H. H. (2019). How to design and evaluate research in education (Tenth edition ed). McGraw Hill Education.
Goodman, R. A., Posner, S.F., Huang, E. S., Parekh, A.K., & Koh, H.K. (2013). Defining and measuring chronic conditions: Imperatives for research, policy, program, and practice. Preventing Chronic Disease, 10, E66. https://doi.org/10.5888/pcd10.120239
Grady, K. L., Rehm, R., & Betz, C. L. (2021). Understanding the phenomenon of health care transition: Theoretical underpinnings, exemplars of nursing contributions, and research implications. Journal of Pediatric Health Care, 35(3), 310–316. https://10.1016/j.pedhc.2020.12.003
Grady, P. A., & Gough, L. L. (2014). Self-Management: A comprehensive approach to management of chronic conditions. American Journal of Public Health, 104(8), e25–e31. https://10.2105/AJPH.2014.302041
Greenhalgh, T., Collard, A., Campbell-Richards, D., Vijayaraghavan, S., Malik, F., Morris, J., & Claydon, A. (2011). Storylines of selfmanagement: Narratives of people with diabetes from a multiethnic inner city population. Journal of Health Services Research & Policy, 16(1), 37–43. https://10.1258/jhsrp.2010.009160
Hanley Nadeau, E., & Toronto, C. E. (2016). Barriers to asthma management for school nurses: An Integrative Review. The Journal of School Nursing: The official of The National Association of School Nurses, 32(2), 86–98. SAGE Publications https://doi.org/10.1177/1059840515621607.
Hardin, A. P., & Hackell, J. M. (2017). Age limit of pediatrics. Pediatrics (Evanston), 140(3), 1–3. https://doi.org/10.1542/peds.2017-2151
Jacobs, R. J., Ownby, R. L., Acevedo, A., & Waldrop-Valverde, D. (2017). A qualitative study examining health literacy and chronic illness self-management in hispanic and Non-hispanic older adults. Journal of Multidisciplinary Healthcare, 10(10), 167–177. https://10.2147/JMDH.S135370
Johnson, K. (2019). Power of the past, celebrate the present, force of the future-part 6: NASN-The next 50 years. NASN School Nurse (Print), 34(4), 217–222. https://10.1177/1942602X19851237
Kitsantas, P., Kornides, M. L., Cantiello, J., & Wu, H. (2013). Chronic physical health conditions Among children of different racial/ethnic backgrounds. Public Health, 127(6), 546–553. https://10.1016/j.puhe.2013.02.006
KyngÄs, H. A., Kroll, T., & Duffy, M. E. (2000). Compliance in adolescents with chronic diseases: A review. Journal of Adolescent Health, 26(6), 379–388. https://10.1016/S1054-139X(99)00042-7
Langmaid, L., Ratner, L., Huysman, C., Curran, S., & Uluer, A. (2020). Supporting the medically Fragile: Individualized approach to empowering young adults With chronic disease during the COVID-19 pandemic. Journal of Adolescent Health, 67(3), 453–455. https://10.1016/j.jadohealth.2020.06.029
Lebensburger, J. D., Bemrich-Stolz, C. J., & Howard, T. H. (2012). Barriers in transition from pediatrics to adult medicine in sickle cell Anemia. Journal of Blood Medicine, 3(default), 105–112. https://10.2147/JBM.S32588
Leroy, Z. C., Wallin, R., & Lee, S. (2017). The role of school health services in addressing the needs of students With chronic health conditions: A systematic review. The Journal of School Nursing, 33(1), 64–72. https://10.1177/1059840516678909
Liberatos, P., Leone, J., Craig, A. M., Frei, E. M., Fuentes, N., & Harris, I. M. (2013). Challenges of asthma management for school nurses in districts With high asthma hospitalization rates. The Journal of School Health, 83(12), 867–875. https://10.1111/josh.12105
Liechty, J. M. (2011). Health literacy: Critical opportunities for social work leadership in health care and research. Health & Social Work, 36(2), 99–107. https://10.1093/hsw/36.2.99
Lozano, P., & Houtrow, A. (2018). Supporting self-management in children and adolescents With Complex chronic conditions. Pediatrics (Evanston), 141(Suppl 3), S233–S241. https://10.1542/peds.2017-1284H
Manganello, J. A., & Sojka, C. J. (2016). An exploratory study of health literacy and african American adolescents. Comprehensive Child and Adolescent Nursing, 39(3), 221–239. https://10.1080/24694193.2016.1196264
Martin, C. M. (2007). Chronic disease and illness care: Adding principles of family medicine to address ongoing health system redesign. Canadian Family Physician, 53(12), 2086–2091. https://www.ncbi.nlm.nih.gov/pubmed/18077734
Maughan, E. D., Bobo, N., Butler, S., & Schantz, S. (2016). Framework for 21st century school nursing practice. NASN School Nurse, 31(1), 45–53. https://10.1177/1942602X15618644
McCabe, E. M. (2020). School Nurses’ role in self-management, anticipatory guidance, and advocacy for students With chronic illness. NASN School Nurse, 35(6), 338–343. https://10.1177/1942602X20906534
Meadows-Oliver, M., & Allen, P. L. J. (2012). Healthy people 2020: Implications for pediatric nurses. Pediatric Nursing, 38(2), 101–105. https://10.1053/jpdn.2001.26285
Modi, A. C., Pai, A. L., Hommel, K. A., Hood, K. K., Cortina, S., Hilliard, M. E., Guilfoyle, S. M., Gray, W. N., & Drotar, D. (2012). Pediatric self-management: A framework for research, practice, and policy. Pediatrics (Evanston), 129(2), e473–e485. https://10.1542/peds.2011-1635
NASN (2018). Reimbursement for School Nursing Services: Position Statement. NASN school nurse. https://journals.sagepub.com/doi/full/10.1177/1942602X18776610.
NASN (2019). Transition Planning for Students with Healthcare Needs (Position Statement). https://www.nasn.org/advocacy/professional-practice-documents/position-statements. https://www.nasn.org/nasn/advocacy/professional-practice-documents/position-statements/ps-transition.
National Academies of Sciences, Engineering, and Medicine 2021 (2021). The future of nursing 2020-2030-charting a path to achieve. The National Academies Press. https://https://doi.org/10.17226/25982. http://nap.edu/25982.
National Association of School Nurses (2017). Chronic Health Conditions (Students with): The Role of the School Nurse - National Association of School Nurses. https://www.nasn.org. https://www.nasn.org/nasn/advocacy/professional-practicedocuments/position-statements/ps-chronic-health.
Nguyen, T. M., Mason, K. J., Sanders, C. G., Yazdani, P., & Heptulla, R. A. (2008). Targeting blood glucose management in school improves glycemic control in children with poorly controlled type 1 diabetes Mellitus. The Journal of Pediatrics, 153(4), 575–578. https://10.1016/j.jpeds.2008.04.066
Park, A., Eckert, T. L., Zaso, M. J., Scott-Sheldon, L. A. J., Vanable, P. A., Carey, K. B., Ewart, C. K., & Carey, M. P. (2017). Associations between health literacy and health behaviors Among urban high school students. The Journal of School Health, 87(12), 885–893. https://10.1111/josh.12567
Polit, D. F., & Beck, C. T. (2017). Nursing research (Tenth edition, international edition ed.). Wolters Kluwer.
Price, J. H., Khubchandani, J., McKinney, M., & Braun, R. (2013). Racial/ethnic disparities in chronic diseases of youths and access to health care in the United States. BioMed Research International, 2013, 787616. https://doi.org/10.1155/2013/787616
Rasu, R. S., Bawa, W. A., Suminski, R., Snella, K., & Warady, B. (2015). Health literacy impact on national healthcare utilization and expenditure. International Journal of Health Policy and Management, 4(11), 747–755. https://10.15171/ijhpm.2015.151
Schroeder, K., & Smaldone, A. (2017). What barriers and facilitators Do school nurses experience when implementing an obesity intervention? The Journal of School Nursing, 33(6), 456–466. https://10.1177/1059840517694967
Schwartz, L. A., Daniel, L. C., Brumley, L. D., Barakat, L. P., Wesley, K. M., & Tuchman, L. K. (2014). Measures of readiness to transition to adult health care for youth with chronic physical health conditions: A systematic review and recommendations for measurement testing and development. Journal of Pediatric Psychology, 39(6), 588–601. https://10.1093/jpepsy/jsu028
Sentell, T. (2020). Reports from University of Hawaii Manoa Highlight Recent Findings in Preventive Medicine (Prevalence of selected chronic conditions Among children, adolescents, and young adults in acute care settings in Hawai‘i). 2020, September 18). Health & Medicine Week, 92.
Sheetz, A. H. (2012). What Are the implications of the institute of medicine report “The future of nursing: Leading change, advancing health” for school nursing practice? NASN School Nurse, 27(6), 293–295. https://10.1177/1942602X12458326
Strand, M., Broström, A., & Haugstvedt, A. (2019). Adolescents’ perceptions of the transition process from parental management to self-management of type 1 diabetes. Scandinavian Journal of Caring Sciences, 33(1), 128–135. https://10.1111/scs.12611
Thakur, N., Barcelo, N. E., Borrell, L. N., Singh, S., Eng, C., Davis, A., Meade, K., LeNoir, M. A., Avila, P. C., Farber, H. J., Serebrisky, D., Brigino-Buenaventura, E., Rodriguez-Cintron, W., Thyne, S., Rodriguez-Santana, J., Sen, S., Bibbins-Domingo, K., & Burchard, E. G. (2016). Perceived discrimination associated With asthma and related outcomes in minority youth: The GALA II and SAGE II studies. Chest, 150(6), N.PAG. https://doi.org/10.1016/j.chest.2016.11.027
Thakur, N., Martin, M., Castellanos, E., Oh, S. S., Roth, L. A., Eng, C., Brigino-Buenaventura, E., Davis, A., Meade, K., LeNoir, M. A., Farber, H. J., Thyne, S., Sen, S., Bibbins-Domingo, K., Borrell, L. N., & Burchard, E. G. (2014). Socioeconomic status and asthma control in african American youth in SAGE II. Journal of Asthma, 51(7), 720–728. https://10.3109/02770903.2014.905593
Van Cleave, J., Gortmaker, S. L., & Perrin, J. M. (2010). Dynamics of obesity and chronic health conditions Among children and youth. JAMA : The Journal of the American Medical Association, 303(7), 623–630. https://10.1001/jama.2010.104
van Houtum, L., Rijken, M., Heijmans, M., & Groenewegen, P. (2015). Patient-perceived self-management tasks and support needs of people with chronic illness: Generic or disease-specific? Annals of Behavioral Medicine : A Publication of the Society of Behavioral Medicine, 49(2), 221–229. https://10.1007/s12160-014-9649-0
Willgerodt, M. A., Brock, D. M., & Maughan, E. D. (2018). Public school nursing practice in the United States. The Journal of School Nursing, 34(3), 232–244. https://10.1177/1059840517752456
World Health Organization. (2018. Noncommunicable diseases. World Health Organization. https://www.who.int/news-room.-fact-sheets/details/noncommunicable-diseases
1 Department of Health Services, Boston Public Schools, Boston, Massachusetts
2 Department of Nursing and Health Sciences, Regis College, Weston, Massachusetts
3 Department of Pediatrics, The University of North Carolina, Chapel Hill
Corresponding Author:Roselaine Charlucien-Koech, 16 Roxana St. Boston, MA, 02136Email: rcharlucien-koech@northeastern.edu
