Implementing Standardized Post-Intensive Care Syndrome Education by an Advanced Practice Registered Nurse in the Pediatric Intensive Care Unit

There are approximately 250 000 children admitted annually to critical care units,1 with improved patient outcomes owing in part to advances in technology and clinical management. Despite these advancements, hospitalization-related factors, such as post-intensive care syndrome (PICS), negatively impact patient outcomes. Post-intensive care syndrome is a complex and common result of a patient’s admission to the intensive care unit (ICU) and can occur within 2 days after a patient receives critical care.2 Post-intensive care syndrome has been defined within the adult population; however, there is not a standardized diagnosis in the pediatric population. Children admitted to critical care units are predisposed to several risk factors of PICS, including endotracheal intubation and mechanical ventilation, that can cause cognitive, emotional, or physical dysfunction. In addition, medications used to assist with safe and effective critical care interventions have been shown to cause exacerbation of delirium, depression, dependence, withdrawal, anxiety, bowel dysfunction, and potential neurodevelopmental abnormalities in the pediatric population.3 Although PICS does not affect every child admitted to the pediatric ICU (PICU), more than 50% of patients will suffer from a cognitive or physical component of PICS.1The identification and anticipation of PICS is an essential part of nursing care. Post-intensive care syndrome can affect patients throughout the lifespan, from premature infants to older adults, and manifests as both physical and cognitive symptoms. Patients may experience one of these symptoms or several symptoms concurrently. Physical symptoms may include fatigue, muscle weakness, and insomnia, whereas emotional symptoms may include anxiety, depression, and posttraumatic stress disorder. Cognitive symptoms may manifest as forgetfulness, poor concentration, decreased memory, and difficulty with organization and processing.2 Advanced practice registered nurse (APRN) leaders can provide PICS education to ensure nurses and caregivers will be able to identify and anticipate symptoms, if they arise.A few studies have demonstrated that pediatric patients develop similar symptoms as adults with PICS and can exhibit cognitive, emotional, and physical impairment after an ICU stay.4-6 In addition, caregivers are susceptible to a related syndrome, termed PICS-family. Similar to adult and pediatric ICU patients, caregivers with PICS-family can experience symptoms such as anxiety, depression, and posttraumatic stress disorder for months to years after a child’s ICU admission.7Efforts have been made nationally to support adult ICU patients and caregivers who present with PICS symptoms. One example of an adult intervention for PICS is a interdisciplinary clinic at our academic medical center. The Post-Intensive Care Longitudinal Survivor Experience Clinic is interdisciplinary and includes physicians, social workers, and pharmacists. Although the team does not include a registered nurse or an APRN at this time, this clinic is designed to partner with the patient and the caregiver to coordinate care and provide guidance after discharge. Patients are given a brochure upon ICU discharge that outlines signs and symptoms of PICS and resources available in the community for those experiencing symptoms (see Figures 1 and 2). Examples of resources are YouTube videos, community support programs, and information on how to contact the Post-Intensive Care Longitudinal Survivor Experience Clinic.Post-intensive care syndrome is a relatively new umbrella term for many diagnoses. Therefore, the signs and symptoms of PICS may be unknown and unexpected for nurses and caregivers of pediatric patients. National education initiatives for caregivers regarding PICS are currently focusing outreach efforts at the time of patient discharge. However, if education begins during admission, there is opportunity for nurses to support patients and caregivers throughout the inpatient stay. By engaging caregivers in education and interventions such as early mobility and delirium prevention, the caregiver is able to partner with frontline nurses in the patient’s journey through the ICU. Early caregiver education and awareness are needed to properly prepare the caregiver for challenges that may occur or continue after discharge and to optimize the well-being and recovery of the pediatric patient after critical illness. Because of their expansive clinical knowledge, expertise in patient education, and experience in caring for critically ill patients, APRNs are well positioned to provide anticipatory guidance and education related to PICS.One APRN-led initiative piloted 3 different interventions in the pediatric ICU to educate caregivers on PICS7: a brochure, an in-person conversation, and a prerecorded video. Of the 62 included participants, the preintervention study data demonstrated the caregivers had poor knowledge of PICS. Postintervention analysis showed an increase in caregiver knowledge of PICS with all 3 interventions. However, the use of a brochure was assessed to be the most successful, as it was a resource for the caregiver to keep with them and was feasible for the bedside nurse to deliver during their shift.7 This research study provided a foundation for a quality improvement project implemented by an APRN team at our academic medical center.Because of the absence of a nurse in the Post-Intensive Care Longitudinal Survivor Experience Clinic team, an APRN-led quality improvement initiative was implemented to create an educational brochure, “Staying on the Road to Feeling Better: After an ICU Stay” (see Figures 1 and 2), for the caregivers of PICU patients. An existing PICS brochure was adapted by a team of pediatric APRNs to meet the needs of the PICU population. The APRN team consisted of a clinical nurse specialist, an acute care pediatric nurse practitioner doctor of nursing practice student, and doctorally prepared pediatric nurse practitioner faculty. The team modified and edited the content of the brochure for an age-appropriate approach, as infants and toddlers do not exhibit the same signs and symptoms of PICS as school-aged children or adolescents.The educational initiative began with a virtual presentation via Zoom that was provided to PICU nurses weekly over a 4-week period. Each week, the APRN student would send out an invitation via email for the PICU nurses to join the educational meeting. This weekly virtual meeting consisted of an overview of PICS, the effects this syndrome has on the pediatric critical care population, and a review of the brochure that was created for patients’ caregivers (see Figures 1 and 2). This structured approach prepared the nurse to answer caregiver questions related to PICS prior to implementing use of the brochures for PICS education with caregivers.In recent months, we completed an initial feasibility evaluation regarding the novel PICS education in our 32-bed PICU. Seven bedside nurses completed a survey on how daily work-flow was affected and education was perceived. Survey questions revealed that all 7 nurses responded “Strongly Agree” or “Agree” that they had read the material, teaching families took less than 7 minutes and did not interrupt workflow, and the educational brochure was easy to introduce to caregivers. Nurses indicated that the PICU brochure was feasible and useful as a standardized bedside PICS educational tool for caregivers.The brochure was demonstrated to be useful in a small population of 7 nurses. Future work that focuses on standardizing PICS anticipatory guidance and education during admission will allow further evaluation of the feasibility of the intervention for nurses during their busy shifts. One of the strengths of this initiative is that by partnering with the bedside nurse, the child’s caregiver can receive the PICS education during admission, have time to ask clarifying questions, and speak with various members of the care team regarding discharge planning and long-term effects of PICS. A child’s PICU admission can have long-term physical, emotional, and cognitive effects on the patient and the caregiver. With the implementation of standardized education, caregivers can be more prepared for the potential effects of a prolonged ICU admission.Development of a pediatric post-intensive care clinic would allow for continuity of care for the child and the caregiver. Provided resources at this clinic can mirror those of the adult clinic at our academic institution, the Post-Intensive Care Longitudinal Survivor Experience Clinic, and include educational videos, community resources, and contact information for the pediatric clinic. A pediatric interdisciplinary clinic, led by an APRN and consisting of a social worker, pharmacist, psychologist, and physician who have clinical expertise in critical care would bridge the gap for children and provide support after discharge as they integrate back into their communities, for example, into school and extracurricular activities. Experts who understand the impact of an ICU admission can provide insight into a child’s recovery from a critical illness, including home care and specialized help at school. Children need consistency in their routines, and having continuity among clinicians, parents, and education could provide a platform for communities to implement wrap-around services for children.During their child’s ICU admission, caregivers are inundated with information. Technology has led us away from printed educational materials, and one of the greatest benefits of the brochure was the ability for the caregivers to reference the resources and information throughout their stay and after discharge. The caregivers are able to take the brochure home after discharge, facilitating their ability to revisit the information as needed. In addition, the paper brochure is a cost-effective intervention, because it can be printed in-hospital and can be edited as needed, as opposed to the cost of supplies and tools needed to make an educational video.7 Other interventions such as an educational video or one-on-one conversation are additional options; however, if the conversation or video is not done at an appropriate time because of caregiver stress or distraction, it can easily be forgotten and cannot be revisited as needed.This quality improvement initiative lays the groundwork for future studies and initiatives regarding APRN-led PICS anticipatory guidance. Standardizing PICS education upon admission facilitates the provision of efficient evidenced-based, preventative education to caregivers with a critically ill child. In doing so, the child and caregiver will have resources that allow the anticipation of potential symptoms following discharge, as well as more importantly the support to optimize healing and recovery after surviving a critical illness. There is a need for more rigorous research regarding PICS as it presents among patients of different ages; this dearth allows a unique opportunity for future collaboration between APRNs with varying roles to improve patient outcomes through the translation of evidence into practice.