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Reflections on 50 Years of Pediatric Neuroscience Nursing

Weak, Lindsey; Fecske, Erin; Breedt, Amanda; Cartwright, Cathy; Crawford, Daniel; Forbes, Angela

Journal of Neuroscience Nursing: October 2018 - Volume 50 - Issue 5 - p 260–264
doi: 10.1097/JNN.0000000000000393

ABSTRACT Throughout the past 50 years, the role of the neuroscience nurse has become more specialized as we continue to keep pace with new innovations and improvement in care for our patients. This is evident when reviewing the hundreds of articles that have been published in the Journal of Neuroscience Nursing over the last half-century. These authors have had a tremendous influence over neuroscience nursing through dissemination of their expert knowledge. This article will review the areas of pediatric hydrocephalus, brain tumors, and epilepsy and the role neuroscience nurses have played in the advancement of these specialties.

Questions or comments about this article may be directed to Lindsey Weak, DNP, at She is a Pediatric Neurosurgery Nurse Practitioner, Banner Children’s Specialists at Cardon Children’s Medical Center, Mesa, AZ.

Erin Fecske, APRN, Neurology/Epilepsy, Children’s Mercy Hospital, Kansas, MO.

Amanda Breedt, APRN, is Neurosurgery Supervisor NP, Seattle Children’s Hospital, Seattle, WA.

Cathy Cartwright, is Director of Advanced Practice Education, Children’s Mercy Hospital, Kansas, MO.

Daniel Crawford, DNP, is Clinical Assistant Professor, College of Nursing & Health Innovation, Arizona State University, Phoenix, AZ.

Angela Forbes, APRN, Seattle Children’s Hospital, Seattle, WA.

The authors declare no conflicts of interest.

Over the last 50 years, pediatric neuroscience nursing has been a significant part of the Journal of Neuroscience Nursing (JNN). Articles have been written on various topics ranging from traumatic brain injury, to spina bifida, to neuro-oncology. However, when the whole of the research was evaluated, the 3 prevailing topics were hydrocephalus, brain tumors, and epilepsy. Nursing research paints a picture of the path to our current state. From the creation of ventriculoperitoneal shunts to the development of comprehensive psychosocial interventions, nurses have been a part of the forward movement of these subspecialties. To provide a brief review and summary of the progress of nursing research, the topics of pediatric hydrocephalus, brain tumor, and epilepsy were selected.

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Pediatric Hydrocephalus

The past half-century has seen tremendous advances in the management of pediatric hydrocephalus. From treatments based on transillumination of the infant head in dark closets and pneumoencephalograms in the 1960s to endoscopic and image-guided surgery in the present day, neurosurgical procedures to treat hydrocephalus are safer and more effective than ever before. Neuroscience nurses have kept pace with these advances throughout the years as they sought to improve nursing care by searching for and using evidence-based practices. Questions such as “why” and “how can we do this better” provided motivation to participate in research and other quality improvement initiatives in an effort to improve outcomes.

For example, a retrospective chart review of 51 cases with presenting symptoms of shunt dysfunction found that 19 had documented constipation.1 It was observed that some children were admitted to the hospital for shunt dysfunction but had resolution of symptoms after bowel cleansing and were spared a shunt revision. After bowel cleansing, 6 did not need shunt revision, suggesting that constipation should be routinely addressed in children with ventriculoperitoneal shunts.1 Today, nurses routinely teach parents of children with shunted hydrocephalus about the importance of an effective bowel program.

Extraventricular drains (EVDs) are frequently placed to drain cerebral spinal fluid (CSF) in the presence of hydrocephalus and CSF infection and to measure intracranial pressure. One study recognized the risk of infection with an EVD, the devastating consequences to the patient, and the significant role nursing plays in preventing infection.2 They did a prospective study of 78 patients with a ventriculostomy catheter in place to see whether the duration of catheter placement was a factor in the development of bacterial ventriculitis. Significantly higher infection rates were identified if the catheter remained in place for longer than 11 days or if the patient had intracranial surgery or received steroids. They concluded that nurses could influence decision making by incorporating these data in charting and reporting patient status.2 Most recently, literature on the management of EVDs was reviewed to develop standardized, best practice protocols for catheter insertion, care, and maintenance.3 Today, neuroscience nurses are reducing ventriculostomy-related infections by following these protocols at centers around the country.

Another recent study sought to improve nurses’ response times when an EVD needed to be placed to emergently relieve hydrocephalus.3 Using a coconut to simulate an infant skull, “mock herniations” were held to measure nurses’ response times and accuracy in setting up an emergent EVD before and after hands-on practice in a skills laboratory. Both time and accuracy improved significantly after the skills laboratory, demonstrating that periodic “mock herniations” can improve response times and accuracy, much like “mock codes” for cardiopulmonary events.3

In this era of healthcare cost-containment priorities, nurses have been providing patient education to decrease hospital length of stay, ensure proper use of emergency services, and decrease the amount of unnecessary medical testing. Patient education has been especially important for children with hydrocephalus as many childhood infections can mimic the signs of a shunt malfunction. Because these concepts can be difficult for the nonmedical person to understand, neuroscience nurses have been instrumental in providing education to increase the family and patient’s knowledge of hydrocephalus and shunts. A 3-part educational intervention was developed to address this importance, consisting of a shunt handbook, a preoperative teaching session with a clinical nurse specialist, and a subsequent reinforcement teaching session.4 After implementation of this program, an improvement in the overall knowledge base of their families and patients was demonstrated. Many educational programs with similar concepts have been implemented in neurosurgery departments across the country. The importance of these educational programs was further proven in a study related to deaths from CSF shunt failure over time, and this study concluded that most of the decline in rate was due to increased nursing staff and effective patient education.5

Significant advances have been made in pediatric hydrocephalus in the last 50 years, but there are still many exciting innovations on the horizon. Research priorities in the next 5 years include identifying the genetic factors in primary and secondary hydrocephalus, exploring CSF biomarkers to test potential pharmacological treatments, improving bioengineering to reduce proximal catheter malfunction and overall shunt failure, and refining surgical shunting procedures to improve survival and reduce infection rates.6 Nurses must keep abreast of improvements in the treatment of hydrocephalus and be active participants in contributing to patient education and evidence-based practice.

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Pediatric Brain Tumors

The incidence of pediatric brain tumors has increased over the last 50 years, making tumors of the central nervous system the second most common pediatric cancer.7 There has been rapid evolution not only in neuroimaging techniques allowing for earlier recognition of tumors but also in surgical techniques. Incredible progress has been made in treatment options, including advances in chemotherapy and radiation. These developments have inspired neuroscience nurses to reconsider how we manage children throughout the spectrum of their disease, from diagnosis until life after treatment.

In her 1991 article entitled “Advances in the Care of Children With Brain Tumors,” Mary Baron8 recognized the hope that these changes would bring, not only for patients and their families but also for neuroscience nurses. Neurosciences nurses continue to become more specialized, and their expertise is rapidly increasing. Tankumpuan et al9 discussed how neuroscience nurses having knowledge of brain tumors helped predict the physical functioning of the postoperative patient. This emphasized the need for neuroscience nurses to be on the cutting edge of the latest research developments and evidence-based practice. Hodges10 similarly discussed how it has become evident that neuroscience nurses need to have a strong understanding of the type and location of the tumor to understand how it will manifest, predict outcomes, and tailor their nursing care appropriately.

Bonner and Siegel11 acknowledged advancements in treatment and management of brain tumors. Specifically highlighted was how the advances in diagnostic imaging, with the wide use of computed tomography and magnetic resonance imaging, allowed for an early and more accurate diagnosis. Bonner and Siegel also detailed how improved technologies, such as the intraoperative microscope, intraoperative navigation, and other operative tools, were revolutionary in making surgery more accurate and safer. Both Baron8 and Bonner and Siegel11 spoke to the advances in radiotherapy, chemotherapy, and immunologic therapy that have helped to dramatically improve survival rates. Complete surgical resection remains the ultimate goal of most neurosurgical interventions as we know survival rates improve with complete resection of more aggressive tumors.8 Advances in surgical approaches have enabled resection of tumors that were previously unresectable. However, surgical approaches continue to be more refined as we continue to gain understanding of the short- and long-term deficits associated with large surgical resections. For example, in patients with craniopharyngioma, neurosurgeons are considering gross total resection versus quality of life, circumventing total resection to avoid lifelong comorbidities.12

Children with brain tumors are living longer, calling for a new focus by neuroscience nurses on the long-term sequelae of those advanced treatments, including the long-term impact on cognitive and overall pathopsychological function. Neuroscience nurses realized the need to place strong emphasis on the child’s quality of life. This included early involvement by palliative care teams, expanding their scope from only end-of-life care to providing support and assistance to the family in complex decision making. The neuroscience nurse plays a crucial role in early involvement of palliative care, recognizing that this is an excellent way to provide multidisciplinary input that can help families weigh different options for treatment and long-term care. McGee and Burkett13 discussed the benefit of a nurse-led support group for parents of children with brain tumors. This gave nurses a unique opportunity to support families as they dealt with life-threatening illnesses.

Throughout the past 50 years, the role of the neuroscience nurse has become more specialized as we continue to keep pace with innovations in pediatric brain tumor management. In 2014, AANN released the clinical practice guideline “Nursing Management of the Pediatric Patient with a Brain Tumor” as a way to provide neuroscience nurses with evidence-based knowledge in their care of their pediatric patients.14 Neuroscience nurses are responsible to help children and their families cope not only with the neurological effects of the tumor but also with potential intraoperative and postoperative complications and the long-term side effects of therapy.8 By using evidence-based knowledge to care for children with brain tumors, neuroscience nurses are instrumental in helping patients and their families navigate this difficult journey.

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Pediatric Epilepsy

Epilepsy is the most common serious neurologic disorder in childhood.15 Given the frequency at which childhood epilepsy occurs, nursing research focusing on this population has been a regular feature since JNN’s inception. The diagnosis of epilepsy in children is known to have a significant impact on members of the child’s family.16 Therefore, many of the articles presented in JNN related to childhood epilepsy have largely focused on the psychosocial impact of this diagnosis for both the patient and family/caregivers.

When evaluating the psychosocial needs of children with epilepsy, articles have primarily focused on quality of life or coping. One study initially investigated specific variables that were found to have an impact on quality of life for children with epilepsy.17 Shortly after this publication, the Children’s Quality of Life Survey was developed and validated to allow nurses to effectively assess the quality of life in children with epilepsy.18 The importance of measuring the psychosocial needs of children with epilepsy was identified and led to the development and validation of the Child Report of Psychosocial Care Scale.19 This scale development allowed for identification of psychosocial needs of children with epilepsy.20 Coping needs specific to adolescents with a diagnosis of epilepsy were also later identified.21 Despite identification of these needs, it is reported that children with epilepsy and their parents continue to have unmet psychosocial needs.22

The psychosocial needs of parents/caregivers and family members are closely associated with those of the children diagnosed with epilepsy. Identification of psychosocial needs in parents of children with epilepsy was first evaluated in 1988 when it was identified that parents who had more positive attitudes related to their child’s epilepsy had more positive coping mechanisms.23 Benevolent overreaction to coping, in parents of children with epilepsy, was specifically linked with maladaptive coping mechanisms suggesting that nursing education could serve as an effective method of prevention for this maladaptive coping mechanism.24 To assess the psychosocial needs of parents, the Parent Report of Psychosocial Care Scale was developed and then used to identify specific psychosocial needs in this population.19 The development of this scale and the previously discussed version targeting children were based on the Model of Family Adaptation to New-Onset Childhood Epilepsy.25

The family unit and their experiences was a focus of additional study.26 The findings recommend a comprehensive approach to management of epilepsy, noting that families needed additional support related to medical knowledge and developmental and emotional issues.26 Later, parental psychosocial needs were specifically identified in the context of children with epilepsy and intellectual disability.27 Through a qualitative study, 5 categories of stress were identified by the team including “concern about the child, communication with healthcare providers, changes in family relationship, interactions with the school, and support within the community.”27

There is a clear role for nurses in addressing the psychosocial needs of children diagnosed with epilepsy and their parents. It has also been suggested that unmet psychosocial needs may be effectively addressed by nurses through assessment.22 Furthermore, the nursing evaluation of parental attitudes on the child’s diagnosis may be vital in the overall health of that child.23 As with many chronic illnesses, families of children with epilepsy need to learn to cope with the diagnosis and additional stress.16 In this review, higher incidences of mental health disorders including anxiety and depression in this population were described.16 Although there is a lack of literature on interventions, providing education about not only a child’s seizures but also the challenges of dealing with a chronic condition can reduce the risk of stressors.16 Most recently, an intervention to increase parental confidence and improve parenting skills was evaluated.28 In this trial, the researchers evaluated parental anxiety as well as child anxiety and internalizing behaviors. Although this study demonstrated improved confidence with the implementation of the Creating Opportunities for Parent Empowerment, the results were limited secondary to difficulty for families to complete the surveys and poor parental awareness of stress behaviors in children.

Over the course of neuroscience nursing, the psychosocial needs of children diagnosed with epilepsy have been evaluated. Nursing has an important role in the identification and interventions to reduce these stressors. Offering early identification and intervention nursing can assist in maximizing outcomes for children with epilepsy and their families.16

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During the last 50 years, neuroscience nurses have accomplished a tremendous amount of work to shape the management and care of patients in a variety of pediatric subspecialties. Their influence has not only improved patient outcomes but also paved the way for future generations to follow and build upon. This article highlights some of the incredible contributions of nurses in the advancement of pediatric neuroscience over the last 50 years, but even more exciting are the endless innovations on the horizon.

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brain tumors; epilepsy; hydrocephalus; neuroscience nursing; pediatric

© 2018 American Association of Neuroscience Nurses