Abstract
Type 1 diabetes in youth is common and often difficult to manage due to developmental, psychosocial, and social determinant–related challenges, leading to poor glycemic control and serious health risks. Adolescents require support that extends beyond clinic visits, making collaboration between healthcare providers, especially APRNs and school nurses, essential. The case study of JT illustrates how consistent communication and coordinated care across school, home, and clinical settings can identify barriers, improve safety, and stabilize glycemic and mental health outcomes. Strengthening APRN–school nurse partnerships and integrating school-based care into standard practice can enhance long-term management and quality of life for youth with T1DM.
Type 1 diabetes mellitus (T1DM) is the third leading chronic disease among youth. Approximately, 304,000 youth have T1DM in the United States with an additional 18,000 diagnosed each year (Center for Disease Control and Prevention, 2022; Wild et al., 2004). Overall glycemic control, measured by hemoglobin A1C (HbA1C), is often poor in youth due to rapid growth, psychosocial developmental factors (Erikson, 1950), and unpredictable daily structure among adolescents (Foster et al., 2019; Lipman & Hawkes, 2021; Willi et al., 2015). This has critical short- and long-term sequelae including diabetic ketoacidosis (DKA), cognitive deficiencies, and micro and macrovascular complications (Lipman & Hawkes, 2021; Mencher et al., 2022). Additionally, mental health co-morbidities, diabetes distress, disease burden, and burnout add complexity to self-management (American Diabetes Association, 2020).
Care of youth with T1DM is often impacted by social determinants of health and stages of development (Lipman & Hawkes, 2021; Office of Disease Prevention and Health Promotion, n.d.). Adolescence is an especially challenging time for youth with T1DM. They focus on fitting in with peers and differentiating themselves from their caregivers (Erikson, 1950) all while learning to assume their own T1DM self-management creating challenges, conflicts, and discord. To provide an interdisciplinary approach, care must go beyond hospital and clinic settings and include a holistic approach. A case study will demonstrate how an Advanced Practice Registered Nurse (APRN) worked closely with a school nurse to lead an interdisciplinary team in the care of an adolescent with T1DM.
Background
T1DM and Impact on Families
T1DM is an autoimmune disease that is disproportionately diagnosed in youth (Giwa et al., 2020). Families with a child diagnosed with T1DM live a dance of constantly balancing the effects of hypo and hyperglycemia (Sperling et al., 2022). These struggles are confounded by developmental stages and social determinants of health related to T1DM such as access to healthy foods, financial burdens, and diabetes distress.
When hypo or hyperglycemia occurs, especially when unrecognized or untreated, life-threatening situations can ensue in the form of hypoglycemic seizures or DKA (Chiang et al., 2018). Long-term, poor glycemic control can have serious downstream systemic outcomes impacting morbidity and quality of life. Youth with T1DM must be followed closely by a pediatric endocrinology team to monitor self-management and HbA1C trends (Gregory et al., 2022). However, some families are overwhelmed by the management of the disease, which may result in infrequent healthcare visits and discordance among those co-managing the disease resulting in higher HbA1C, increased diabetes distress, and a deterioration in mental health for the youth creating a cycle of poor glycemic control (Bisno et al., 2022).
The following case study highlights the role and impact collaboration between an endocrine clinic APRN and a school nurse can have in supporting the student and family via interdisciplinary communication and coordination to create a safety net for vulnerable youth with T1DM. This model can be implemented in all settings and systems that encounter youth. The coordination of the interdisciplinary team members needs to extend beyond the confines of an outpatient clinic to include all environments in which youth interact optimizing their health care.
Case Study
The School Nurse
School nurses are an important member of the care team for youth with T1DM. With their support, youth with diabetes can safely attend school. The school nurse can help support the developmental needs of the youth, oversee their diabetes management at school, and assist with developmental transitions. School nurses have knowledge of the idiosyncrasies of glycemic trends, diabetes distress, and self-management. They also have a relationship with the clinic care team and, with parental consent, can initiate contact with any questions. They interact with the family system, teachers, guidance counselors, and peers obtaining information the clinic care team does not typically have access to. When working with students with T1DM and their families, school nurses apply the four practice principles (care coordination, leadership, quality improvement, and community/public health) emphasized by the School Nursing Practice Framework (National Association of School Nurses [NASN], 2024). Missed connections between the school nurse and other members of the care team represent a gap in care delivery. Building and fostering this relationship can provide a safety-net for vulnerable patients by amplifying support which may ultimately improve glycemic control and decrease diabetes distress.
Advanced Practice Registered Nurse
The pediatric diabetes clinic at a local university medical school had a relationship with the school district to promote the scaffolding of care to youth in that district. A grant funded program supported an APRN from the clinic to provide follow-up care for youth with T1DM in an urban, public-school setting. During these follow-up visits at the school, the APRN assessed the health status of youth living with T1DM, and reviewed their diabetes self-management strategies while collaborating with the school nurse. The APRN and school nurse collaboration outlined in the subsequent case yielded critical information informing both the psychosocial and physiologic needs for a student already compromised by several social determinants of health.
Background
JT (name changed to protect confidentiality) is a 15-year-old adolescent with T1DM. JT is an established patient in an academic pediatric diabetes clinic and presented for an initial visit with the APRN. Despite standard recommendations that individuals with T1DM be seen every 3 months, JT and family did not schedule appointments according to recommendations and regularly missed scheduled appointments. This resulted in missed opportunities to address a higher-than-targeted HbA1C, often greater than 12%. Additionally, JT lost approximately 10% of their body weight, indicating suboptimal insulin dosing (Chiang et al., 2018).
Eventually, JT was placed in custody of the Department of Children and Families (DCF) for concerns unrelated to their diabetes care. JT was placed with a distant family member who was not familiar with the self-management plan of care for an adolescent with T1DM; therefore, JT’s foster mother received standard diabetes education before assuming care. Despite this, JT continued to miss appointments but was not hospitalized for an episode of DKA or severe hypoglycemia.
The school nurse provided the APRN context about JT’s family system concerns and their subsequent impact on diabetes care. An interdisciplinary educational intervention was conducted and included the student, the pediatric endocrine clinic’s social worker (SW) and certified diabetes educator (CDE), as well as the APRN and school nurse. Subsequently, the APRN-school nurse team followed JT at school to measure the impact of the educational intervention on glycemic control and other psychosocial factors.
Without adequate support and supervision by parents/guardians compliance at this age can be poor due to the developmental stage of the adolescent. During one visit to the school, the school nurse shared with the APRN concerns about the level of diabetes care support JT was receiving. The school nurse shared that JT was responsible for getting himself up for school, getting his own breakfast, and administering his own insulin before school. On one occasion JT administered insulin, did not eat breakfast, and then had a 40-min bus ride to school arriving severely hypoglycemic. Another time, JT came to school reporting that he did not have any insulin at home and had not had an insulin dose in the past 24 hr. Considering these concerns and through collaboration with the team, it was determined that JT’s lack of supervision necessitated the clinic-based CDE to provide re-education to JT and his foster parents. The re-education was reinforced by the APRN during clinic visits and by the school nurse at school. Despite this re-education, the foster parents were unable to follow the plan of care.
In response to communication from the APRN, CDE, SW, and school nurse about JT’s poor self-management, DCF determined that the current foster care placement was inappropriate and life-threatening. JT required hospitalization in order to manage his T1DM while awaiting an appropriate foster placement that would provide specific care for an adolescent with T1DM. With education from the T1DM care team DCF was able to better understand the educational requirements for a foster parent of a youth living with T1DM. Foster parents who are willing and have the capacity to provide this type of care are few. After several weeks an appropriate placement was obtained allowing JT to remain in the same school and maintain the same clinical team.
Collaboration
Once the APRN was embedded in the school it became evident that the school nurse had critical information about JTs home situation. The APRN realized the importance and value of a collaborative relationship with the school nurse. Including the school nurse as a team member in regular, frequent, and meaningful ways was foundational to JT’s success. This led to information sharing which became reciprocal and mutually beneficial. Data involving behavioral, psychosocial, and mental health concerns through the lens of the school nurse became valuable information for the interdisciplinary team. The school nurse reported to the APRN that prior to the current collaboration initiative she was only occasionally in touch with the pediatric endocrine clinic to clarify orders, provide care updates, or ask questions. Both the APRN and the school nurse could clearly see the benefits of the collaboration.
An additional benefit revolved around improving the school nurse’s knowledge around diabetes care. Questions the school nurse asked revealed a need for an educational intervention on the care of students with T1DM. Specifically, diabetes technology innovations which are ever-changing. When diabetes technology is not optimized; patient outcomes aren’t optimized. Thus, during school visits the APRN provided the school nurse with updates on diabetes management, optimization of technology, as well as clarified orders and closed care gaps.
Outcome on Glycemic Control and Psychosocial Health
APRN-school nurse collaboration ultimately helped identify relevant social situations that impacted JT’s glycemic control and mental health. Together with an interdisciplinary team (SW, DCF, and CDE), the APRN-school nurse team was able to coordinate JT’s care to optimize diabetes management, mental health, and family system support. Integrating the school nurse into the care team lead to improved information sharing, better interdisciplinary collaboration for patient care, and increased access to professional development for the school nurse.
With JT’s improved mental health due to a stable living arrangement and reliable diabetes care at home and school, glycemic control also improved, an association validated in research (Fritzen, 2021). The school nurse coordinated JT’s care by including an interdisciplinary team and working across systems in which JT interacts. This case study has practice, future research, and policy implications that may be generalizable across the pediatric population for those in the school setting such as school nursing professionals.
Implications for Future Practice, Policy, and Research
True collaboration among diabetes care team members is critical to improving the health and wellness of youth with T1DM. It is important to consider inclusion of the team members, such as school nurses, that are beyond the clinic walls. These caregivers have vital historical and assessment data that can inform interventions. School nurses should be involved in planning and implementing care plans to meet the needs of youth with T1DM. In fact, care coordination is a foundational principle of the School Nursing Practice Framework (NASN, 2024). This may include attending pediatric endocrinology clinic appointments with families (with their permission). When school nurses are actively involved in coordinating, implementing, and supervising care for patients with T1DM, glycemic control and quality of life can improve, especially for adolescents who are managing multiple developmental challenges, social determinants of health, stressful social situations, and concurrent mental health disorders. Furthermore, with a strong APRN-school nurse relationship, the ARPN can provide real-time, up-to-date education and troubleshooting regarding chronic and complex physiologic conditions for which there are no formal or standardized educational program. This is especially important given the rapid pace of technological innovation for diseases such as T1DM.
Medicaid or more widespread grant-funded school district-based programs should consider payment for care provided outside of the clinic (i.e., schools) that implements care models prioritizing care coordination to improved health outcomes, as emphasized in the School Nursing Practice Framework (NASN, 2024). This may also help standardized care available to all youth with chronic disease, especially those with multiple subspecialists.
Integrating school-based care with standard care practices for youth with T1DM will help increase access to coordinated care and improve outcomes. Research is needed examining the impact of APRN and school nurse team delivered care and operationalizing through the School Nursing Practice Framework (NASN, 2024) can help identify intervention strategies.
Conclusion
APRN-school nurse teams that harness interdisciplinary collaboration, open communication, and person-focused care is poised to make a meaningful difference for vulnerable youth living with T1DM leading to successful self-management.
Footnotes
Author Contributions
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Ethics Approval
This study was approved by the UMassChan Medical School Internal Review Board (STUDY00002005) and determined to be non-human research on August 6, 2024.
Dr Soloperto is a pediatric nurse practitioner who has a special interest in optimizing the care and self-management of pediatric patients with type 1 diabetes especially through novel technology.
Dr Aronowitz’s seminal contribution has been to advance the science of evidence-based care for sexual health promotion and healthy adolescent development. Dr Aronowitz has completed over a dozen Community-Based Participatory Action projects, collaborating with African American, Asian American, Native American families to promote health adolescent development free of negative risk behaviors. She is a fellow of the American Academy of Nursing.