Journal of Pediatric Nursing (2015) 30, 329–332

Medication Compliance Protocol for Pediatric Patients With Severe Intellectual and Behavioral Disabilities



Christina Epitropakis BSN, RN a , Elizabeth A. DiPietro MSN, CRRN b, a

Pediatric registered nurse on the Neurobehavioral Unit at Kennedy Krieger Institute, Baltimore, MD Clinical nurse specialist at Kennedy Krieger Institute, Baltimore, MD

b

Received 28 March 2014; revised 6 August 2014; accepted 8 August 2014

Key words: Medication; Compliance; Autism; Refusal; Administration

Pediatric nurses are well aware of patient medication refusal. For a variety of reasons, many pediatric patients are noncompliant with their medication regimen. Medication administration is even more difficult when the population has severe intellectual and behavioral disabilities. An inpatient unit composed of children with these diagnoses presented a unique challenge. To address this issue, the unit RNs devised a medication compliance protocol. Initial implementation resulted in a success rate of 83.3% for six patients, after 4 weeks. Despite the small sample size, the RNs experienced a positive outcome with medication administration through consistent application of a medication compliance protocol. © 2015 Elsevier Inc. All rights reserved.

AN INTERNATIONALLY KNOWN children's hospital in Baltimore, Maryland, addresses the needs of outpatient and inpatient children who have brain, spinal cord injuries and neurobehavioral issues. The medical and behavioral needs of the patients are met through a comprehensive multidisciplinary approach in an inpatient or outpatient setting, dependent on the complexity of the patient's healthcare needs. The inpatient setting consists of three separate units, a Pediatric Comprehensive Neurorehabilitation Unit for children with disorders of the brain and/or spinal cord, a Pediatric Feeding Disorders Unit, and a Neurobehavioral Unit for children with neurobehavioral issues. The Neurobehavioral Unit (NBU), a 16-bed inpatient unit, admits children with intellectual disabilities and significant behavioral issues including autism spectrum disorders (ASD), such as Asperger's syndrome and pervasive developmental delay. The most common concomitant

⁎ Corresponding author: Elizabeth A. DiPietro, MSN, CRRN. E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2014.08.006 0882-5963/© 2015 Elsevier Inc. All rights reserved.

diagnoses associated with ASD are disruptive behavioral disorder (DBD), stereotypic movement disorder (SMD) with self injurious behaviors (SIB), bipolar disorder (BPD), mood disorder (MD), anxiety disorder (AD), conduct disorder (CD) and attention deficit hyperactivity disorder (ADHD). Children from all over the world are admitted and treated on the NBU. Interdisciplinary team members, consisting of clinical behavioral psychologists, clinical specialists, psychiatrists, psychologists/case managers, nurses, social workers, physical therapists and speech therapists, create and implement treatment plans for all patients. Uniquely created patient treatment plans target specific problem behaviors related to individual diagnoses. An admission to the NBU spans approximately 3 to 9 months with the overall goal of a reduction in problem behaviors by 80%. Most of the individualized treatment plans include decreasing or eliminating medication refusal, an issue well known to pediatric nurses. Medication compliance is imperative, as many of these patients require multiple medications to treat their complex medical needs. Typically developing pediatric patients often refuse medication

330 administration due to a variety of reasons. These factors may include an unknown environment, fear, fatigue, illness, and/or prior negative experiences with medication administration. It is often up to the pediatric nurse to develop creative strategies to encourage medication administration compliance, while simultaneously maintaining patient dignity and adhering to the facilities' policies to reduce the incidence of medication errors. The pediatric nurse must provide safe and effective medication administration while maintaining an “understanding of child development from a bio-physiological and psychological perspective” (Murphy & While, 2005, p. 930). Detailed literature on medication administration challenges involving pediatric patients diagnosed with severe intellectual and behavioral disabilities is limited; however a fair amount of research addresses the chronically ill pediatric population's non-adherence to prescribed healthcare regimens. Many components contribute to noncompliance and “factors that have been associated with non-adherence include psychiatric illness, psychological factors, family issues, and health problems” (Smith & Shuchman, 2005, p. 615). Low-level cognitive function and poor comprehension influence the pediatric patient's ability to fully comply with the prescribed treatment plan. According to Hommel, Denson, Crandall, and Machner (2008), “studies across pediatric populations have demonstrated poorer adherence to long-term medical regimens in children and adolescents who exhibit behavioral and emotional dysfunctions” (p. 787). Pediatric patients with these behavioral and emotional dysfunctions include children with severe developmental disabilities who either may not intellectually understand the rationale for medication compliance or may have an alteration in sensory perception. This variant can be either an increased or decreased sensitivity to external stimuli or diminished mental processing. There may be a heightened or reduced sense of taste, touch, texture and smell; altered proprioception; distorted comprehension; and/or oral–motor aversion. Sensations that would be acceptable to a typically developing child may be perceived as unpleasant, irritating or even painful for the child diagnosed with developmental and cognitive delays. The pediatric nurse should be prepared to address these differences during medication administration. A heightened response to anything placed in or around the oral cavity could result in a negative reaction such as medication refusal. Maladaptive behaviors, such as aggression, self-injurious behavior, and resistance to medication administration, are often the only mechanisms of communication and control, and may develop due to hyposensitivity/hypersensitivity to external stimuli, and/or lack of understanding. Pediatric nurses caring for this type of special needs population must understand the pediatric patients' intellectual disability and sensory processing differences, while ensuring medication administration compliance (Hagopian & Hardesty, 2014; Kern et al., 2006). The NBU pediatric nurses have devised several resourceful approaches to decrease medication refusal in this particular

C. Epitropakis, E.A. DiPietro pediatric patient population. The patients on the NBU often have difficulty with consuming their medications, exhibiting such behaviors as mouth closure, head turning, refusal to swallow, and spitting. To address this problem, the nursing staff works directly with the behavioral psychology team to perform a preference assessment with each patient to determine which edible or tangible reinforcement such as candy, cookies, crackers, ice cream, toys, music or cartoons, the patient prefers. Suggestions from family members are also obtained during the preference assessment period, which occurs within the first week of admission, in order ensure their involvement in the medication compliance protocol development. The behavioral team members observe which reinforcers the patient prefers the most using data analysis. After several sessions, the nursing staff and the behavioral psychology team outline the patient's preference; incorporate the specific item (s) as a positive reinforcer(s) for the medication procedure; and develop an individualized medication compliance protocol. Applied behavior analysis (ABA) is the framework utilized to decrease or eliminate problem behaviors that frequently develop in children with intellectual and developmental disabilities regarding medication compliance. ABA is a discipline concerned with the application of behavioral science in real-world settings such as clinics and schools to improve socially important issues such as behavior problems and learning (Baer, Wolf, & Risley, 1968; Rapoff, 2010). ABA procedures are separated into two categories: comprehensive and focused. Many children with intellectual disabilities and autism require both procedures be used in order to improve behavioral difficulties. Comprehensive ABA interventions target global measures of functioning including IQ, adaptive skills, and social skills in children with autism. This treatment is often provided for several years and is used in the home, at school and within the community. The following skills are targeted: attention, discrimination, language/communication, socialization and more advanced educational skills such as reading. Focused ABA interventions are time limited since they address certain problems such as: self-injury, disruptive behavior, pica and other behaviors. Focused ABA involves identifying the variables controlling the problem behaviors (Hagopian & Hardesty, 2014). Once the variables are identified, an individualized treatment plan is created. Individualized treatment plans may include medication protocols if medication compliance has been a problem. Environment and consistency are both significant variables that impact medication compliance and must be regulated to minimize problem behaviors while encouraging adaptive behaviors (Hagopian & Hardesty, 2014). Furthermore, reinforcement for undesired action associated with medication compliance must be withheld (Hagopian & Hardesty, 2014). Education and coaching are necessary to assist the patient with his or her understanding of the expectations, therefore patients who require the implementation of medication protocols are provided the opportunity to practice. Practice sessions are conducted using placebo medications before

Medication Compliance for Pediatric Patients With Behavioral Disabilities actual medication protocols are implemented by registered nurses. For example, a patient may practice taking applesauce from a spoon or chocolate syrup from a syringe. If the patient is successful with the placebo and follows the protocol, he or she is rewarded with the positive reinforcer. Once the patient has been successfully guided through the procedure, the actual protocol using the prescribed medications is implemented. An example of a fully applied medication compliance protocol for a patient who is prescribed two oral liquid medications; and whose positive reinforcers include strawberry syrup and listening to music on an iPod might involve the following: • The RN reviews the medication compliance protocol. The environment is controlled for distractions and the positive reinforcer is obtained. • The RN prepares three syringes—syringe #1 with strawberry syrup; syringe #2 with liquid medication mixed with strawberry syrup; and #3 with liquid medication mixed with strawberry syrup. • The RN presents syringe #1 (plain strawberry syrup) and then follows with syringe #2 (medication mixed with strawberry syrup). • If patient consumes medication, provide access to music via iPod for 30 seconds. • After the 30 second time interval, the RN removes the reinforcer, and presents syringe #3 (medication mixed with strawberry syrup). • If the patient consumes the medication, provide access to music via iPod for 30 seconds. • Continue alternating medication administration with reinforcer (music via iPod) until all of the medication is consumed. As long as every nurse follows the protocol correctly, the consumption of medications is successful. If nurses do not follow the stepwise protocol, the consumption of medications decreases. It is critical to provide consistent structure during medication administration in order to ensure compliance. If the patient refuses to consume the medication, the medication is presented again within 30 minutes, strictly following the medication compliance protocol. If the patient continues to refuse, the physician or nurse practitioner is notified regarding the patient's refusal. In rare cases, the behavioral team members will “basket hold” the patient to facilitate medication administration. A basket hold consists of the patient sitting in a chair with his arms crossed over his chest while a behavior team member holds their hands. A basket hold is not a physical restraint, but rather a brief, harmless hold that encourages the patient to consume his or her medications in a safe, effective manner. Consistent application of the medication compliance protocol is imperative, so it is the nurse's role to work closely with both the behavior team and the patient to increase medication compliance. Deviation from the medication compliance protocol can hinder progress and therefore

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consistency is vital. In order to ensure the medication protocols are followed correctly and reliably by each nurse, hardcopies of the medication protocols are printed and placed in the medication room with medication compliance positive reinforcers. Many protocols outline the use of the same chair, the same spoon, and the same location in the treatment room. Successful implementation of the medication compliance protocols is helpful in ensuring that all the patients receive 100% of their medications. The time it takes for medication compliance protocols to be successful is dependent on each patient. For instance, some patients respond earlier than other patients based on cognitive function and comprehension. Once the medication compliance protocol is finalized, it is uniformly employed every time medications are presented. The nursing staff and behavior team maintain close contact with the parents during the admission regarding progression of medication compliance and both teams are responsible for instructing the parents how to implement the medication compliance protocol when the patient is discharged home. As the patient's discharge date approaches, parents are requested to attend hands on training for medication protocol teaching and implementation. The educational sessions initially begin with parents observing the process and then gradually incorporate the parents as the medication administrator. Detailed coaching in medication administration and positive reinforcer usage are given. Upon discharge, follow up is provided in two methods. First, the behavior team conducts home visits to ensure that parents are following medication protocols and assists with any behavior issues that may arise due to a changed environment. A common challenge parents have faced while implementing medication protocols at home is distractions such as loud noise or over stimulation. It is important for the parents to conduct medication protocols in quiet, controlled environments. The positive reinforcer should be the only stimulation during medication administration. Second, the patient is also served by the NBU Follow-up Clinic. This program continues to reinforce the specific guidelines of the inpatient medication compliance protocol, while providing additional resources and training as necessary. The benefit of this service is that it provides close collaboration and overlap of various healthcare disciplines, enabling ongoing assessment and fine-tuning of the treatment plan. To date, the implementation of medication compliance protocols has been successful. In 2012, there were six medication compliance protocols implemented, with an overall success rate of 83.3% after 4 weeks. Three of the medication compliance protocols had a 100% success rate, while the other three medication compliance protocols had varied success rates, ranging from 50 to 75%. Two of the lower success rates (both 75%) were attributed to the patients' depressed mood at the time of the medication administration. The lowest success rate (50%) was related to the bitter taste of the specific medications. It was very

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Table 1 2012 medication compliance protocol success rates after 4 weeks. Medication Patient Patient Patient Patient Patient Patient #2 #3 #4 #5 #6 compliance #1 protocol Success rate 100%

100%

100%

75%

75%

medication compliance protocol can improve or even resolve this dilemma. The application of an applied behavior analysis procedure, using only positive reinforcements, can effectively shape and change behavior.

50%

References challenging to hide the unpleasant taste, and even when the preferred reinforcers were presented, refusal occurred 50% of the time (Table 1). As previously stated implementing the medication compliance protocol is very detailed and can be challenging. The pediatric nurse must consistently present both the medication and the reinforcement to the patient, without any variation from the medication compliance protocol. If the patient complies, he or she must always be rewarded with the reinforcement. If the patient refuses, the reinforcement must unfailingly be withheld. It is common for the patient to require several presentations when administering the medications with the reinforcement and most patients are non-compliant with the first few medication administration attempts. Medication administration in the pediatric population is often difficult and when the patients include children with intellectual disabilities coupled with significant behavioral disorders, the problem can be intensified. The consistent implementation of detailed

Baer, D., Wolf, M., & Risley, T. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1, 91–97. Hagopian, L. P., & Hardesty, S. L. (). Applied behavior analysis: Overview and summary of scientific support. KennedyKrieger.og. Retrieved from. http:// www.kennedykrieger.org/patient-care/patient-care-programs/inpatientprograms/neurobehavioral-unit-nbu/applied-behavior-analysis 2014. Hommel, K. A., Denson, L. A., Crandall, W. A., & Machner, L. M. (2008). Behavioral functioning and treatment adherence in pediatric inflammatory bowel disease: Review and recommendations for practice. Gastroenterology and Hepatology, 4, 785–791. Kern, J., Trivedi, M., Garver, C., Grannemann, B., Andrews, A., Savla, J., et al. (2006). The pattern of sensory processing abnormalities in autism. The International Journal of Research and Practice, 10, 480–494. Murphy, M., & While, A. (2005). Medication administration practices among children's nurses: A survey. British Journal of Nursing, 21, 928–933. Rapoff, M. A. (2010). Adherence to pediatric medical regimens (2nd ed.). New York, NY: Springer Business + Science Media. Smith, B. A., & Shuchman, M. (2005). Problem of nonadherence in chronically ill adolescents: Strategies for assessment and intervention. Current Opinion in Pediatrics, 17, 613–618.

Medication compliance protocol for pediatric patients with severe intellectual and behavioral disabilities.

Pediatric nurses are well aware of patient medication refusal. For a variety of reasons, many pediatric patients are noncompliant with their medicatio...
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