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Perspectives: Communication: The Key to Effective Interdisciplinary Collaboration in the Care of a Child with Complex Rehabilitation Needs
Healthcare providers have the unique opportunity to provide care and treatment to patients with complex medical needs. They learn early in their careers that the care they provide doesn’t just include the patient. Communication is essential across the continuum and involves multiple providers and the family. An interdisciplinary team facilitates a comprehensive plan for recovery and treatment. This case study centers on the interdisciplinary approach to the rehabilitation continuum of care across the spectrum and its effects on patient outcomes.
Kennedy Krieger Institute (KKI) is an internationally recognized institution dedicated to improving the lives of children and adolescents with pediatric developmental disabilities through patient care, special education, research, and professional training (KKI, n.d.). This case study centers on the comprehensive interdisciplinary approach to the care continuum across the spectrum of pediatric rehabilitation and its effect on patient outcomes.
K. J. might be called a “Kennedy Kid” because he has been provided with healthcare services since infancy. K. J. was born at 40 weeks gestation, weighing 5 lbs with a positive toxicology screen for opiates. His mother disclosed a history of daily, heavy heroin use and poor prenatal care. His postnatal course included a 3-day stay in the neonatal intensive care unit (NICU) secondary to narcotic withdrawal and meconium aspiration. Within the first several hours of his life, he began to exhibit symptoms of drug withdrawal.
Heroin has a short half-life, so withdrawal symptoms can be seen within 24 hours of birth (Hamdan, 2009). Classic symptoms of neonatal drug withdrawal include myoclonic jerks, tremors, marked irritability, hyperreflexia, loose stools, yawning, and sneezing. These symptoms occur due to the sudden withdrawal of an opiod, such as heroin. The standard course of treatment at this time was paregoric, which is an opium tincture, given every 3 to 4 hours, and monitoring via the Neonatal Absence Syndrome Scoring Form (Finnegan, 1990) every 4 to 8 hours to assess the severity of withdrawal. The severity of the withdrawal is dependent on the type of drug, frequency of use, and dosage and can also be affected by the infant’s metabolism.
Infants experiencing neonatal drug withdrawal are at increased risk for impaired growth, respiratory difficulty, skin breakdown, poor maternal/infant bonding, and sudden infant death syndrome (Wilson, 1989). Longitudinal studies of the effects on infants exposed to prenatal heroin are lacking (Ostrea & Ostrea, 1997). Infants born with neonatal drug withdrawal often have other coexisting variables that affect their health such as poor socioeconomic conditions, lack of a nurturing environment, and exposure to continued parental drug use. The literature indicates that infants born with neonatal drug withdrawal who continue to be raised in a poor postnatal setting are at greater risk for intellectual, visual-motor, and behavioral problems. These deficits can continue into the school-age years (Wilson).
During the neonatal withdrawal period, it is recommended that care be provided in an environment with around-the-clock monitoring by trained healthcare personnel. The healthcare team needs to be able to provide medication administration, frequent assessments, problem recognition, and early intervention. Due to the nature of his symptoms, K. J. was admitted to KKI’s Early Infant Transition Center for treatment of severe neonatal drug withdrawal. From 1996–1999, KKI operated an Early Infant Transition Center to provide a less costly healthcare setting for infants requiring 24-hour healthcare monitoring but not necessarily at the neonatal intensive or acute-care level. The primary target population was infants who required monitoring due to prematurity and those ¨diagnosed with neonatal drug withdrawal. The goals included infant medical stabilization and parent/family education.
K. J.’s stay at the Early Infant Transition Center was unremarkable. He successfully withdrew from heroin without any complications. Extensive parent teaching was completed with K. J.’s mother and grandmother. Referrals for mental health and substance abuse counseling were arranged. After a 25-day admission, K. J. was discharged to his home in stable condition. His mother was permitted to provide care under the supervision of K. J.’s maternal grandmother and the Department of Social Services. Despite the support and counseling offered by the Department of Social Services, K. J.’s mother was not able to provide consistent care for K. J. The most consistent caregiver in K. J.’s early childhood was his grandmother, who was named his legal guardian when K. J. was 4 years old.
K. J.’s next encounter with KKI was at age 4 when he was referred to the Behavioral Psychology Department for evaluation. His grandmother provided information regarding his sleeplessness, hyperactivity, and disruptive behaviors. K. J. was evaluated by two separate physicians and a behavioral psychologist. The team recommended that K. J. receive outpatient services in the Behavioral Psychology Department’s Behavior Management Clinic and be evaluated by Child Find, which is a federally funded program that assists in the evaluation and school placement for young children with disabilities. After being expelled from his preschool program, a referral was also made to KKI’s education specialist. The education specialist established goals for K. J. and initiated an interdisciplinary approach that included a neuropsychologist and an occupational therapist (OT). The OT focused on K. J.’s difficulty with fine motor and sensorimotor skills related to his delayed growth and development and the neuropsychologist assessed his cognitive, social, and personality traits.
At age 5, K. J.’s grandmother reported episodes of repeated aggression (up to 20 times daily), bedwetting, and increased sleeplessness. The Behavioral Psychology Department developed a behavior program that involved teaching K. J.’s grandmother strategies and techniques to address K. J.’s behaviors. K. J. also underwent further evaluation and diagnostic testing for his increased aggression, sleeplessness, and hyperactivity. This evaluation resulted in the diagnosis of attention deficit hyperactive disorder (ADHD).
The KKI Behavior Psychology Outpatient Department tracked K. J.’s progress from ages 6–12. He was successful with his outpatient therapies and attended his local elementary school with the help of built-in supports. At one point, his grandmother even reported that “he was a good student in the 6th grade, strong in math and reading, and was a B student. K. J. played on the school basketball team, seemed to be more social since starting middle school, was able to maintain friendships, and was more outgoing.”
Traumatic Brain Injury
At the age of 12, K. J. was struck as a pedestrian by a sport utility vehicle and sustained a severe traumatic brain injury (TBI). Statistically, individuals with a premorbid history of ADHD who exhibit impulsive, hyperactive, and inattentive behavior are more susceptible to incurring brain injuries (Semrud-Clikeman, 2001).
K. J.’s Glasgow Coma Scale (GCS) at the scene was 6, indicating an increased risk of long-term problems. The GCS is a tool used to predict morbidity and mortality. A score of 8 or less often signifies a severe head injury (Semrud-Clikeman, 2001). K. J.’s injuries included a complex skull fracture extending from the right parietal bone through the left parietal and occipital bone in the left temporal base. He required a hemicraniectomy for increased intracranial pressure (ICP) secondary to brain swelling, a tracheostomy to establish an effective airway, and gastrostomy tube placement to provide adequate nutritional needs. There was extra-axial blood overlying in the right hemisphere with some mass effect on the right hemisphere and compression of the right lateral ventricle with a 5-mm midline shift. A bone flap was removed and stored for future replacement.
Nursing care for K. J. required tracheostomy management; enteral nutrition; position changes; medications; treatments; and implementation of protocols related to physical therapy, occupational therapy, behavior therapy, neuropsychology, speech pathology, and activities of daily living. Wound care was required for the right parietal area. K. J. presented with intermittent fever spikes, neurological storms, and seizures. Several medications were trialed (levetiracetam, phenobarbital, diazepam, and oxcarbazepine) to determine appropriate seizure prophylaxis and treatment. Other medications included albuterol for wheezing, methadone and oxycodone for pain management, glycopyrrolate for secretion control, metoclopramide and lansoprazole for gastrointestinal management, and enoxaparin for deep vein thrombosis prophylaxis. As K. J. emerged from his coma, Concerta was added to his medication regimen to manage his premorbid ADHD.
The healthcare management of a patient who has sustained a TBI is challenging. The goal of the interdisciplinary team was to assist K. J. in functional gains and progress within the rehabilitation setting. For K. J., his ability to participate in therapies was always a dynamic process. He ranged from periods of brief alertness to sedation to extreme agitation. At times, the premorbid ADHD diagnosis confounded the ability of the team to tease out symptoms related to TBI. The interdisciplinary team practiced with creativity—treating in his room with shortened therapy sessions to reduce stimulation and distraction, for example. Methods to facilitate communication and improve patient outcomes included KKI’s Nursing Standard of Care for Brain Injury (Table 1), KKI’s Interdisciplinary Standard of Care for Brain Injury Rehabilitation (Table 2), and KKI’s tools to facilitate communication (Table 3).
Upon admission, every patient receives a rehabilitation backpack with a binder. This backpack travels with the patient throughout the program day. The binder includes the patient’s daily therapy schedule, any applicable protocols (e.g., physical therapy, occupational therapy, behavioral psychology, speech pathology), and a communication page for families and therapists. The goal of the binder is to include communication mechanisms for families and interdisciplinary team members when families are not able to be present for all therapies and to help orient the patient with people, place, and time (Table 3). During weekly interdisciplinary rounds, K. J.’s progress was discussed by respective treating disciplines. This information was shared with K. J.’s grandmother.
Safety was a major concern during K. J.’s treatment. There were times when he attempted to crawl or jump out of bed, he pulled at tubes and attempted to decannulate himself, and he grabbed and swatted at caregivers. To maintain safety, we introduced a one-to-one aide and an enclosed bed to his treatment. The criteria for using an enclosure bed include determining whether a patient has impaired judgment or cognitive abilities and whether a patient is at risk for wandering or climbing out of bed.
The magical day when K. J. smiled was a turning point. He began following commands with extra processing time, which marked emergence from coma. This is called “time to follow commands.” To validate the reliability of this recovery milestone, this type of event must be observed by a KKI staff member at least two times within a 24-hour period.
Emergence from posttraumatic amnesia is the point at which the patient is able to form and lay down new memory. For K. J., this happened when he was able to remember skills from one day to the next and ambulate with his direct care person to and from therapy sessions without verbal cues or prompting.
Recovery is a process. The most rapid recovery occurs in the first 6 months postinjury (Brain Injury Association, n.d.). The business of children is a little different. There are always additional factors to consider—the age at which the TBI occured, the extent of injury, premorbid factors, secondary complications, length of coma, family support and understanding, and the individual’s resiliency (Ewing-Cobb, Fletcher, & Levin, 2000).
After K. J. had achieved the goals relative to his inpatient stay, the next steps were discussed and planned with his grandmother. The patient education notebook provided to patients when they are admitted to KKI is used throughout their stay and given to the family after the patient is discharged. This notebook is an essential component for teaching and providing resources and education to the patient and family. For K. J., the notebook housed useful information about TBI, resources, information on medication, therapy protocols, equipment, follow-up appointments, and discharge instructions. An additional part of the treatment process is developing a patient-specific daily schedule of treatments and medications that can be used to explain this information to the family. Several copies are included in the notebook so that they can be shared with the patient’s school, primary care physician, or other caregivers. It is also forwarded via e-mail so the family can make updates with information from additional follow-up visits and as recovery continues.
At his discharge meeting, it was decided that K. J. would benefit from admission to KKI’s outpatient specialized transition program (STP). STP is a ¨comprehensive rehabilitation day program designed to treat children and adolescents with intensive therapeutic needs. The program provides patients with a full range of rehabilitative services including physical, occupational, and speech therapies; neuropsychology; behavior psychology; medicine; nursing; and educational services. STP fosters an interdisciplinary approach with the patient and his or her parent or guardian and allows the care team to play an active role in the patient’s healthcare decision-making process (STP, 2005). STP weekly interdisciplinary rounds are held during which all patients are discussed, progress of goals is reviewed, and discharge plans are outlined and updated. There is ongoing collaboration between all disciplines, including nursing. Continuum of care is accomplished through discussion related to the patient’s specific discharge plan, ongoing verbal communication, and medication reconciliation (Table 3). There is a strong correlation between the health status of family and the health status of its individual family members; therefore, it is essential that the family be involved in every aspect of family members’ health care—from health promotion through the rehabilitative stage (Friedman, Bowden, & Jones, 2003). Prior to his transition, K. J. and his grandmother visited STP for a tour and explanation of services. This introduction is important because “establishing a trusting relationship in which there is mutual respect and open, honest communication goes hand in hand with the assessment process and orientation phrase of working with a family” (Friedman et al., p. 178).
K. J. presented to STP alert, cooperative, eating by mouth, continent of bowel and bladder, and ambulatory. However, he still required ongoing rehabilitative services including physical and occupational therapy, neuropsychology, behavior psychology, education, medicine, and nursing services to address his ongoing cognitive deficits due to TBI. Interdisciplinary goals and discharge plans were developed with K. J. and his grandmother. According to Friedman and colleagues (2003), having the family involved in the discharge process is crucial to the health status of the individual family member and the success of the rehabilitative process.
Many patients discharged from STP are able to return to the educational institutions they attended before sustaining their injury. Prior to discharge from STP, a meeting was held to determine the next setting for K. J. During this meeting, the least restrictive educational environment and ongoing therapy needs were considered. For most patients, the goal is to return to the patient’s prior educational setting with built-in support. For K. J., an individualized education plan meeting was attended by representatives from KKI and K. J.’s home school. The findings revealed the need for a more structured educational setting. It was decided that it would be best for K. J. to transition to KKI’s special education middle school because K. J.’s ongoing needs related to his brain injury and his pre-existing condition of ADHD would be best met there. Specially trained nurses in this setting are available to administer medications, provide physical and neurological assessments as needed, and provide support and training to the education staff about specific healthcare conditions.
Part of the collaborative practice in treating a patient who demonstrates such a wide spectrum of healthcare needs is communication with the parent or guardian during the entire process of growth and development. K. J. is cared for by his grandmother; she was asked “What was the most important aspect of care that K. J. received that helped you during this experience?” She summed it up in one word: “communication.” K. J.’s grandmother marveled that communication was ongoing. Although K. J.’s grandmother was not always able to attend all therapy sessions because she needed to return to work, she was pleased to report that the communication regarding K. J.’s progress, discharge planning, and transition to STP was helpful.
Another key element in addressing the needs of a patient with complex healthcare needs is coordinated, patient-centered care. Nurses from all settings at KKI, including inpatient, outpatient, specialized transitional day program, and school, worked together to make every transition seamless. Open lines of communication between the various settings were maintained to provide ongoing continuum of care for K. J. One of KKI’s advantages is that it offers a comprehensive interdisciplinary approach to managing pediatric rehabilitation needs across our contiuum of care, which includes inpatient, outpatient, and STP. K. J. was provided the opportunity to have all of his rehabilitation healthcare needs met by the same facility with nurses playing an integral role in all of these areas.
There are many stories similar to that of K. J.’s. Nurses learn early in their nursing careers that care and treatment never include just the patient. Including family members and caregivers in the process is crucial, and emphasizing the importance of communication and the benefits of a team approach can affect the continuum of care and patient outcomes.
Special thanks to K. J. and his family for the opportunity to care for him and their willingness to be interviewed for this article; to the members of KKI’s interdisciplinary team who cared for K. J.; and Elaine Stashinko, PhD RN, and Tami W. Swearingen, MS RN LNCC, for their assistance with manuscript preparation.
About the Authors
Paula A. Reber, MEd RN CRRN, is a senior staff educator, spinal cord liaison, at Kennedy Krieger Institute in Baltimore, MD. Address correspondence to her at firstname.lastname@example.org
Elizabeth A. DiPietro, MSN RN CRRN, is a clinical nurse specialist at Kennedy Krieger Institute in Baltimore, MD.
Yvonne Paraway, PhD RN, is the outpatient nurse manager at Kennedy Krieger Institute in Baltimore, MD.
Barbara P. Obst, MS RN, is the Specialized Health Need Interagency Collaboration nurse consultant at Kennedy Krieger Institute in Baltimore, MD.
Rebecca A. Smith, BSN RN CRRN CWCN, is the senior patient care coordinator at Kennedy Krieger Institute in Baltimore, MD.
Charnan L. S. Koller, MA RN CRRN CCRP, is the quality assurance and employee health nurse at Encore at Turf Valley in Ellicott City, MD.
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