Phanie / Alamy
Abstract Pediatric perioperative nurses care for a wide variety of children and adolescents, some of whom have special developmental or behavioral needs. Providing care for this vulnerable population can be challenging because they may not express their level of pain or anxiety through behaviors commonly observed in typically developing children. This quality improvement project was conducted to enhance perioperative care delivered to children with challenging behaviors and to their families. A screening tool to individualize the plan of care was developed to identify specific behaviors, triggers, and communication patterns of these children prior to hospitalization. Interventions were identified to address these behaviors that could be used by nurses, child life specialists, and occupational therapists. Partnering with parents and other members of the interprofessional healthcare team has resulted in best practice care planning for these children, ensuring a much more successful perioperative experience for patients and families. Findings from parent surveys demonstrate that by using the tool, nurses and other team members are able to minimize stressors and implement interventions specific to the child. As a result, the adaptive care planning tool has expanded beyond the perioperative area and is now being used by direct care nurses, support staff, nurse practitioners, and physicians across the organization. Key words: Adaptation; Children; Developmental disabilities; Perioperative.
KAREN BALAKAS, PHD, RN, CNE, CAROL S. GALLAHER, BSN, RN, AND CARRA TILLEY, BSN, RN
Optimizing Perioperative Care for
CHILDREN AND ADOLESCENTS with Challenging Behaviors MCN
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ediatric hospitals care for a wide variety of children and adolescents who bring with them individual medical needs as well as physical, social, and emotional strengths and challenges. There is an increasing population of children and adolescents with developmental disabilities being admitted for surgical procedures. Through analysis of data on children aged 3 to 17 years compiled in the 1997–2008 National Health Interview Survey, researchers from the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration determined the incidence of any developmental disability had increased from 12.84% to 15.04% over 12 years (Boyle et al., 2011). This means that about one in six children has one or more developmental disabilities (CDC, 2013). As prevalence rates rise, nurses must become knowledgeable about the unique challenges of this population so that care can be individualized for the patient and family (Scarpinato et al., 2010). The CDC defines developmental disabilities as a “group of conditions that result in impairment in physical, learning, language, or behavior areas” (CDC, 2013). These conditions become apparent in infancy or childhood, are present throughout the lifetime, and can include Down syndrome, cerebral palsy, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), hearing or visual impairment, or other developmental delays (Boyle et al., 2011). Previous research has shown that children with these diagnoses experience more hospitalizations than other children and have difficulty coping and cooperating in healthcare settings and hospitals (Drake, Johnson, Stoneck, Martinez, & Massey, 2012; Johnson & Rodriguez, 2013; Scarpinato et al., 2010). Handling hospitalization, a new diagnosis, or surgery can be a challenge for most children and families. Children must cope with fear and anxiety related to strangers, separation, pain, loss of control, and new routines (DeMaso & Snell, 2013). Most children have a variety of ways to deal with the stressors associated with hospitalization. Children who have developmental disabilities and behavioral issues may have a more difficult time coping with hospitalization than typically developing children (Thompson & Tielsch-Goddard, 2014). For these children, their behaviors during a hospitalization are one means of communicating distress when there is a disruption in routine (Johnson & Rodriguez, 2013). Trying to elicit cooperative behaviors from these children during a healthcare visit can be challenging and the trial-and-error approach usually used by providers often results in failure (Drake et al., 2012). Children who have developmental disabilities such as ASD, Down syndrome, or ADHD can have difficulty with sensory processing, using adaptive behaviors, cog-
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nition, and socialization (Demopoulos, Hopkins, & Davis, 2013; Tonge, 2011). They may have difficulty when encountering new environments, changing daily routines and activities, interacting with other people, and understanding what is happening to them (O’Donnell, Deitz, Kartin, Nalty, & Dawson, 2012). Not being able to process an environment’s visual and auditory information can make it difficult to appropriately handle new situations and regulate emotions. When confronted with an unfamiliar and potentially threatening environment, such as the hospital, their ability to cope can be compromised (O’Donnell et al.). Prior research has shown that children with developmental disabilities experience an increased burden of unmet needs and decreased satisfaction with care received during a hospital experience when compared with typically developing children (Drake et al., 2012; Johnson & Rodriguez, 2013; Kopecky, BroderFingert, Iannuzzi, & Connors, 2013; Scarpinato et al., 2010). They may react to the frightening hospital environment with aggressive behaviors that include tantrums, property destruction, hitting, kicking, biting, throwing furniture, and running away. These behaviors are stressful for parents, other family members, and healthcare providers, and may also pose a significant safety concern. Unfortunately, previous negative hospital experiences can influence the child’s behavior at subsequent visits. Thus, it is important for healthcare providers to be aware of an individual child’s typical responses and proactively design interventions to prevent these challenging behaviors (Drake et al.).
THE NEED FOR INDIVIDUALIZED ASSESSMENT OF THIS VULNERABLE POPULATION WAS RECOGNIZED BY THE PERIOPERATIVE NURSING STAFF.
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Identification of the Problem The number of children with developmental disabilities was growing in our setting, and caring for these children in the perioperative environment was becoming increasingly demanding for nurses in the Same Day Surgery department. Nurses expressed worry that it was not always possible to deliver the safest and most effective care for this population. One nurse recalled a specific patient encounter illustrating this concern. The nurse had gone to the waiting room to bring a patient back into the preoperative area and as she greeted the adolescent patient, he offered his hand to shake saying, “My name is John and I have Asperger’s. Do you know how to take care of me?” The nursing staff discussed the encounter and recognized an opportunity to improve the approach to providing individualized care for these children who have special developmental or behavioral needs. This quality improvement project was designed to develop an adaptive care plan (ACP) for patients with challenging behaviors as an intervention to improve the surgical experience for the children and their families.
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This project was conducted in the Same Day Surgery department of St. Louis Children’s Hospital. The daily census averages 40 to 50 patients typically ranging in age from birth to 18 years. Surgeons and proceduralists represent 10 specialties. The surgery schedule is prepared 3 days in advance and finalized at noon the day ahead. Nurses from same day surgery contact families by phone the day prior to surgery to ensure that all information is current in the medical record and to answer any scheduling questions the families may have at the time. A multidisciplinary committee was formed to develop an intervention that would directly address the need to individualize perioperative care for this population. The team included nurses from the preoperative and postoperative areas, the operating room (OR), and same day surgery, along with a child psychologist, a child life specialist, an anesthesiologist, a nurse practitioner, an occupational therapist, a clinic nurse, and a parent representative. One parent in particular, who was especially knowledgeable and active in advocating for children with autism, was invited to join the team. We realized that a knowledgeable, caring parent advocate was a key stakeholder in designing a positive patient experience. An extensive review of the literature was conducted to gain knowledge about characteristic behavioral responses of this population and potential evidence-based interventions that could be implemented. The team reviewed the typical patient flow from clinic visit to discharge, searching for opportunities to better identify and proactively plan for the children. Discussions included past experiences that resulted in frustration as well as experiences that had gone well. This work resulted in identification of barriers to a positive experience within the perioperative environment: lack of knowledge of an individual patient’s mode of communication, existing triggers that might cause aggression in specific patients, unrecognized parental stressors, a need to individualize what may be absolutely necessary in individual physical assessments, factors contributing to overstimulation in the environment, lack of sufficient time with patients related to staffing, prolonged wait times, excessive noise, number of healthcare providers, and a lack of knowledge of effective strategies to promote calming unique to each patient. The parent team member helped to identify positive aspects personally experienced within the perioperative setting: her child was addressed directly during registration; the certified registered nurse anesthetist spent time with him preoperatively to establish familiarity; the child life specialist created a calm and nonthreatening presence; and appropriate aspects of physical assessment were waived by the anesthesiologist due to his sensory issues. All of this information helped the team determine a number of areas of focus for care planning and management.
Developing the Intervention After reviewing published screening tools and examining those from two other hospitals, the team developed a specific ACP screening tool reflecting identified needs and goals (Figure 1). It was anticipated that some parents
would complete the tool during a clinic visit. However, if the need for an ACP was determined by the same day surgery nurse during a preoperative phone call, then that nurse would review the tool with the family. Pediatric nurse practitioners could also identify the need during the previsits scheduled for patients with complex medical histories in the preoperative assessment clinic. During these previsits, the families are seen by an anesthesia provider, making this an ideal opportunity for planning for appropriate adaptive care. The tool, printed on colored paper so clearly visible, would be placed in the patient’s chart with a second sheet for the preoperative nurse to document any additional useful information regarding the specific care needs that may be helpful to other caregivers the patient would encounter that day. The ACP was trialed over a 6-month period with 68 families.
Interventions Addressed Within the ACP Environment
The team discussed the need to be mindful of assigning these patients to preoperative rooms where it would also be possible to remove or disguise medical equipment contained within the room that would be a potential stressor (Nelson & Amplo, 2009; Scarpinato et al., 2010; Thompson & Tielsch-Goddard, 2014). Families have indicated that sensory needs of these children can elicit unpredictable responses in an unfamiliar environment and that managing these reactions can be very challenging (Case-Smith, Weaver, & Fristad, 2014). Room lighting levels, provision of calming music, and availability of tactile objects that may be helpful were considered for use to improve the stressful hospital environment (Johnson & Rodriguez, 2013). An effort was made to consistently assign these patients to quieter rooms but that was not always possible. However, it was found that simply closing the curtain could sometimes calm a child in an otherwise busy, overwhelming environment. Decreased Wait Time
Patients typically arrive 90 minutes prior to surgery with the majority of that time spent in an individual preoperative room. This exposed the patient and family to an unfamiliar environment for an extended period and without individualized interventions did not contribute to successful adaptation (Nelson & Amplo, 2009). The goal to coordinate shorter wait times was identified as a means to decrease the stress experienced by many of these patients. The reduced amount of time therefore available to prepare the child and family for surgery implied the need for well-timed and synchronized care. Staffing
As the charge nurse prepared assignments for the following day, an alert from the same day surgery nurse after the preoperative phone call or anesthesia provider of a patient requiring an ACP was critical. Ideal staffing for these patients is one to one, allowing the nurse to fully implement the care MCN
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Figure 1. ADAPTIVE SCREENING TOOL. Adaptive Care Screening Tool
In order to provide the best possible care for your child, please help us by answering the following questions: Parent/Caregiver providing information: ______________________________________________________________________ Patient’s preferred name: ____________________________________________________________________________________ How does he/she typically do at medical visits, previous surgeries, past hospitalizations? ________________________ _____________________________________________________________________________________________________________ What has worked well in the past? ____________________________________________________________________________ Does he/she interact well with people/strangers? Does he/she become easily agitated or aggressive?
■ Yes ■ Yes
■ No ■ No
■ Sometimes
Please describe his/her behavior in stressful situations: ________________________________________________________ _____________________________________________________________________________________________________________ What do you typically do to help your child relax in stressful situations? _________________________________________ _____________________________________________________________________________________________________________ What is the best way to communicate with your child? _________________________________________________________ _____________________________________________________________________________________________________________ What other ways of communication does he/she use or prefer? (e.g., pictures, words, etc.) ________________________ _____________________________________________________________________________________________________________ Does your child understand what is said? Does he/she typically make eye contact when communicating? Is he/she sensitive to certain things?
■ Yes ■ Yes ■ Yes
■ No ■ No ■ No
■ Sometimes ■ Sometimes
If yes, please tell us how he/she reacts to the following:
■ Sights: ________________________________________________________________________________________________ ■ Sounds: _______________________________________________________________________________________________ ■ Tactile/touch: __________________________________________________________________________________________ ■ Smell: _________________________________________________________________________________________________ ■ Taste: _________________________________________________________________________________________________ What items/methods are typically used as a positive reinforcement for him/her? _________________________________ _____________________________________________________________________________________________________________ Has your child ever been prescribed a medication for calming? If yes, what? _____________________________________ _____________________________________________________________________________________________________________ How does your child express that he/she is in pain? ____________________________________________________________ _____________________________________________________________________________________________________________ Estimated Weight: ___________________________________________________________________________________________ Any other information you would like to share about your child that would be helpful in his/her care? _____________ _____________________________________________________________________________________________________________ _____________________________________________________________________________________________________________
Signature: _________________________________ Date/Time: __________________________
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plan. The admitting preoperative nurse could then be able to maintain communication with all other caregivers to coordinate care. Providing a consistent nurse and decreasing the number of healthcare providers helps to establish a routine within the perioperative area and build trust with the patient and family (Nelson & Amplo, 2009; Scarpinato et al., 2010). Families were also asked to have two family members accompany the child on the day of surgery whenever possible, providing additional assistance and support. Education of Staff
To familiarize and educate nurses and other staff members in the perioperative area and the outpatient clinics about the project, the team created a presentation incorporating developmental aspects of behaviorally challenged children, the purpose of the project, and how to use an ACP. During presentations at surgical unit staff meetings, expanded time was planned for discussions regarding realistic implementation of the ACP in that setting. Support for successful execution of the plan needed to be firmly established among all caregivers to achieve the goal of safe, individualized, and targeted care for these patients (Thompson & Tielsch-Goddard, 2014).
People First Language
The parent team member discussed the need for caregivers to use word choices that are respectful to people with disabilities, and the team psychologist provided further insight about the type of rapport that can be established based on thoughtful communication. The use of People First Language encourages caregivers to speak to the person and not to the disability. This is a sentence structure that recognizes the person first and then the condition making the disability a secondary attribute, rather than a characteristic of the person’s identity (Collier, 2012; Zeitzer, 2013). For example, a comment such as “She has autism” rather than “She’s autistic” is crucial in exchanges with these patients and families. Becoming aware of and using People First Language has been challenging but seeing the impact has demonstrated its importance. Additional Hospital Departmental Resources
Once a child needing an ACP was identified, continual and consistent communication throughout the perioperative experience was vital. The screening tool supported communication with the family, and nurse practitioners acted as a link among families, staff nurses, and physicians. This approach was especially helpful when determining the need for a modified physical assessment. Routine activities in the perioperative setting such as a general physical assessment or obtaining vital signs can be very upsetting for children with developmental disabilities (Drake et al., 2012). Thus, for some select patients, deferrals of specific vital signs in the preoperative area or obtaining an admission weight at home were found to be appropriate strategies to achieve optimal care outcomes.
Various supportive resources easily accessed within the hospital were included as potential helpful interventions for these patients. A child life specialist who works in the perioperative unit daily is skilled at identifying patients who could benefit from appropriate therapeutic interventions. Provision of a calming presence and distraction techniques are extremely helpful for this patient population (Nelson & Amplo, 2009; Scarpinato et al., 2010). Some of the families coming to the hospital indicated that their child was receiving Sensory Integration therapy as a component of treatment. This is a commonly used therapy for children with developmental disorders delivered by occupational therapists, although the research base for its effectiveness has not been firmly established (American Academy of Pediatrics, 2012; Creasey & Finlay, 2013). Weighted blankets are a frequently used intervention within this treatment method, so a lead apron from the radiology department was made available. Occupational therapists made additional tactile objects accessible as needed.
Proactive Care Planning
Parents as Experts
Some families expressed anxiety regarding the physical difficulty of bringing stressed children to the unit, highlighting the need for additional methods of assistance. Anesthesia providers evaluated the need for preoperative medication administration by parents prior to arrival to the hospital. The screening tool also assisted in determining if a modified arrival plan would be helpful for an individual patient.
Family-centered care is a philosophy that frames our nursing care delivery model. It is an approach to care in which patients, families, and the healthcare team are partners and work together to create the optimal plan of care for each individual child (Johnson & Rodriguez, 2013; Kuhlthau et al., 2011). Thus, although the information on the screening tool would contribute to informed, coordinated care provided by the healthcare team, the expertise of the family present with the child was considered another critical element of the plan. Family members are the best source of information on the day of surgery about how to care for their child. We have found that if we listen to them and take cues from them regarding interaction with their child, we then affirm their abilities and create an environment of team work and cooperation. Families of children with developmental disabilities often need additional support while being regarded as experts in the care of their child (Avis & Reardon, 2008).
Communication Among Healthcare Team Members
Door Symbol
The child life specialist designed a “Quiet Zone” sign for the patient’s door. This sign would alert anyone entering the child’s room of the need to consult the ACP tool contained in the chart before interacting with the patient (Johnson & Rodriguez, 2013). The family’s approval was secured before placing the sign on the door as part of the care provided. The family’s continued involvement in the plan of care as well as the need to meet the expectations of the ACP was essential to its success.
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PERIOPERATIVE NURSES OFTEN RELY ON PHYSICAL AND BEHAVIORAL INDICATORS TO ASSESS THE LEVEL OF PAIN AND ANXIETY A CHILD MIGHT BE EXPERIENCING BEFORE AND AFTER A PROCEDURE.
Evaluating the Practice Change A brief evaluation tool was used to determine the effectiveness of the ACP. At the time of discharge, parents were asked to rate their experience relative to their expectations and to share what could have been done differently to improve a future experience for their child. As part of the routine telephone follow-up with families the day after surgery, general satisfaction about the success of the ACP was elicited if the survey had not been completed prior to discharge. The brief survey included an overall evaluation of care related to the ACP on a one-to-five scale, with five indicating care exceeded expectations and one signifying expectations were not met. Nurses included a question asking additional information from parents to improve future experiences as well as any other parent comments because some of these patients would be returning to the hospital for future procedures. During the pilot period, 33 (48.5%) of 68 parents who returned the survey at discharge rated their experience as a five and 45 parents (67%) indicated either a score of four or five. Although most parents did not provide any additional written feedback, the verbal responses received were positive with the most consistent comment being that parents would not change any aspect of the care delivered.
Beginning Success Stories One indication of the success of the ACP is the story of a 10-year-old boy with Down syndrome admitted for a repeat surgical procedure. When the same day surgery nurse saw his name on the surgical schedule, she recalled the behavioral challenges during his previous visit and took steps to initiate the ACP. During a phone call the day before admission, his mother reported that he becomes increasingly agitated when placed in an examination room or any room with a stretcher and suggested that vital signs and preoperative assessments be completed in the waiting area or play area and that the stretcher be removed from his room. She also revealed that he was extremely frightened of hospital scales. Knowing an accurate weight would be needed on the morning of surgery, the nurse practitioner consulted with the anesthesiologist and suggested parents weigh him at home. After further discussion the healthcare team developed the following individualized plan: the former nurse would care for him because of her pre158
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vious knowledge of and relationship with the family; parents would weigh him at home and the anesthesia provider would accept this weight; his preoperative wait time was shortened to 45 minutes; most of his preoperative workup would be completed in the playroom; preoperative vital signs would be deferred if he became extremely anxious with attempts to obtain this information; the stretcher would be removed from his room until needed for transport; a child life specialist would engage him in calming activities in the playroom until transport to the OR; he would not need to put on hospital pajamas until sedation was effective; and a parent would be present in the OR during induction. This plan went very well and his parents were pleased overall with the experience, stating that he had done so much better than during previous visits. Another example of the ACP success was related by a nurse providing care for a teenage male patient with autism and Down syndrome who previously had become agitated in the postanesthesia care unit (PACU) when waking up from anesthesia. The postoperative period was very stressful for this patient, his father, and the nursing staff. During a more recent admission, the recovery nurse was able to review information on his ACP prior to his arrival in the PACU and consult with the surgeon and anesthesia provider. As a result, the patient’s father was called into the PACU prior to wake-up, which is not usual practice. Research has suggested that the presence of a parent can significantly reduce anxiety in these children in the recovery area (Hache & Sun, 2009). The patient awakened, his father was there to calm him, and he was subsequently dressed and discharged to home from the PACU. His father was pleased with the experience of seeing his son successfully cope with the hospitalization and being discharged in a time frame that worked well for this family.
Future Plans Although there has been a significant improvement in the care provided for this population, obstacles to full implementation at all times remain present. Concerns related to a lack of consistency among caregivers, difficulty maintaining support from some staff members due to the increased effort required, inconsistent identification of patients who would benefit from an ACP, ability to always staff appropriately to support delivery of an ACP, and lack of ideal physical space for patients with sensory challenges have been identified. As the team reflects upon the progress and challenges of maintaining this initiative, there is clear acknowledgment of the need for consistent assessment and modification of the ACP screening tool and process. Further work with the referring outpatient clinics on use of the screening tool helped to ensure that all patients who could benefit are identified prior to the day of surgery. The same day surgery nurses worked to reeducate the outpatient clinic nurses so that the screening tool was successfully implemented. This reeducation effort provided the clinic staff with an opportunity to learn more about the patients they are caring for and ways that they too could improve their care delivery.
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SUGGESTED CLINICAL IMPLICATIONS • As prevalence of developmental disabilities has increased, all nurses must have the knowledge and skills to be able to provide appropriate perioperative care for children who may have challenging behaviors. • Use of an adaptive care planning tool can alert the nurse to a child’s specific needs and establish the basis for meaningful communication and planning with the family. • Development of a multidisciplinary team is necessary for planning, coordinating, and monitoring care and resources for this population.
After reporting outcomes from this process improvement project in general leadership and staff forums, several inpatient units expressed interest in learning more about using the ACP with inpatients. In the perioperative area a paper version of the ACP was possible, but the inpatient areas document exclusively in an electronic medical record. To make the tool usable for inpatient admissions, work with clinical information systems staff was needed to build the assessment tool and ACP into the inpatient electronic clinical documentation system. Incorporating the tool in the electronic medical record will ensure that the information is available from visit to visit and enable the healthcare team to deliver consistent individualized care.
Conclusion The ACP is a tool that has increased the quality and safety of care provided for patients with challenging behaviors. Its use continues to expand beyond the perioperative area and has been embraced by nurses, support staff, nurse practitioners, anesthesia providers, and physicians across our organization. Providing the healthcare team with a tool that customizes care for the patient helps us carry out our hospital’s mission of “doing what is right for kids.” ✜ Karen Balakas is a Research Manager, St. Louis Children’s Hospital, St. Louis, MO. She can be reached via e-mail at [email protected] Carol S. Gallaher is a Staff Nurse, Perioperative Services, St. Louis Children’s Hospital, St. Louis, MO. Carra Tilley is a Manager, Perioperative Services, St. Louis Children’s Hospital, St. Louis, MO. The authors declare no conflict of interest.
References American Academy of Pediatrics. (2012). Sensory Integration therapies for children with developmental and behavioral disorders. Pediatrics, 129(6), 1186–1189. doi:10.1542/peds.2012-0876 Avis, M., & Reardon, R. (2008). Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: A qualitative study. Journal of Child Health Care, 12(1), 7–17. doi:10.1177/1367493507085615 Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., …, Kogan, M. D. (2011). Trends in the prevalence of developmental disabilities in US children, 1997-2008. Pediatrics, 127(6), 1034–1042. doi:10.1542/peds.2010-2989
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Case-Smith, J., Weaver, L. L., & Fristad, M. A. (2014). A systematic review of sensory processing interventions for children with autism spectrum disorders. Autism, 1–16. doi:10.1177/1362361313517762 Centers for Disease Control and Prevention. (2013). Developmental disabilities. Retrieved from http://www.cdc.gov/ncbddd/developmentaldisabilities/index.html Collier, R. (2012). Person-first language: Noble intent but to what effect? Canadian Medical Association Journal, 184(18), 1977–1978. doi:10.1503/cmaj.109-4319 Creasey, N., & Finlay, F. (2013). Question 2: Do weighted blankets improve sleep in children with an autistic spectrum disorder? Archives of Disease in Childhood, 98(11), 919–920. doi:10.1136/archdischild-2013305011 DeMaso, D. R., & Snell, C. (2013). Promoting coping in children facing pediatric surgery. Seminars in Pediatric Surgery, 22(3). 134–138. doi.org/10.1053/j.sempedsurg.2013.04.004 Demopoulos, C., Hopkins, J., & Davis, A. (2013). A comparison of social cognitive profiles in children with autism spectrum disorders and attention-deficit/hyperactivity disorder: A matter of quantitative but not qualitative difference? Journal of Autism & Developmental Disorders, 43(5), 1157–1170. http://dx.doi.org/10. 1007/s10803-012-1657-y Drake, J., Johnson, N., Stoneck, A. V., Martinez, D. M., & Massey, M. (2012). Evaluation of a coping kit for children with challenging behaviors in a pediatric hospital. Pediatric Nursing, 38(4), 215–221. Hache, M., & Sun, L. S. (2009). Perioperative management of patients with Down syndrome. Current Pediatric Reviews, 5(3), 180–183. doi:10.2174/1573396097 89007196 Johnson, N. L., & Rodriguez, D. (2013). Children with autism spectrum disorder at a pediatric hospital: A systematic review of the literature. Pediatric Nursing, 39(3), 131–141. Kopecky, K., Broder-Fingert, S., Iannuzzi, D., & Connors, S. (2013). The needs of hospitalized patients with autism spectrum disorders: A parent survey. Clinical Pediatrics, 52(7), 652–660. doi:10.1177/000992281 3485974 Kuhlthau, K. A., Bloom, S., Van Cleave, J., Knapp, A. A., Romm, D., Klatka, K., …, Perrin, J. M. (2011). Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics, 11(2), 136–143. http://dx.doi.org/10.1016/j.acap.2010.12.014 Nelson, D., & Amplo, K. (2009). Care of the autistic patient in the perioperative area. AORN Journal, 89(2), 391–397. doi:10. 1016/j.aorn.2009.01.018 O’Donnell, S., Deitz, J., Kartin, D., Nalty, T., & Dawson, G. (2012). Sensory processing, problem behavior, adaptive behavior, and cognition in preschool children with autism spectrum disorders. American Journal of Occupational Therapy, 66(5), 586–594. doi:10.5014/ ajot.2012.004168 Scarpinato, N., Bradley, J., Kurbjun, K., Bateman, X., Holtzer, R., & Ely, B. (2010). Caring for the child with an autism spectrum disorder in the acute care setting. Journal for Specialists in Pediatric Nursing, 15(3), 244–254. doi:10.1111/j.1744-6155.2010.00244.x Thompson, D. G., & Tielsch-Goddard, A. (2014). Improving management of patients with autism spectrum disorder having scheduled surgery: Optimizing practice. Journal of Pediatric Health Care, 28(5), 394–403. doi:10.1016/j.pedhc.2013.09.007 Tonge, A. (2011). Perioperative care of the pediatric patient with Down syndrome. AORN Journal, 94(6), 606–614. doi:10.1016/j. aorn.2011.09.005 Zeitzer, D. (2013). Why language matters when writing about people with disabilities. Public Relations Tactics, 20(2), 8. www.prsa.org/ intelligence/tactics/articles/view/10066/1073/why_language_matters_when_writing_about_people_wit
Centers for Disease Control and Prevention: Developmental Disabilities, Facts About Developmental Disabilities www.cdc.gov/ncbddd/ developmentaldisabilities/facts.html National Center on Birth Defects and Developmental Disabilities www.cdc.gov/ncbddd/index.html American Academy of Pediatrics: HealthyChildren.org www.healthychildren.org/English/health-issues/ conditions/ developmental-disabilities/Pages/default.aspx MCN
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Abstract Pediatric perioperative nurses care for a wide variety of children and adolescents, some of whom have special developmental or behavioral needs. Providing care for this vulnerable population can be challenging because they may not express their level of pain or anxiety through behaviors commonly observed in typically developing children. This quality improvement project was conducted to enhance perioperative care delivered to children with challenging behaviors and to their families. A screening tool to individualize the plan of care was developed to identify specific behaviors, triggers, and communication patterns of these children prior to hospitalization. Interventions were identified to address these behaviors that could be used by nurses, child life specialists, and occupational therapists. Partnering with parents and other members of the interprofessional healthcare team has resulted in best practice care planning for these children, ensuring a much more successful perioperative experience for patients and families. Findings from parent surveys demonstrate that by using the tool, nurses and other team members are able to minimize stressors and implement interventions specific to the child. As a result, the adaptive care planning tool has expanded beyond the perioperative area and is now being used by direct care nurses, support staff, nurse practitioners, and physicians across the organization. Key words: Adaptation; Children; Developmental disabilities; Perioperative.
KAREN BALAKAS, PHD, RN, CNE, CAROL S. GALLAHER, BSN, RN, AND CARRA TILLEY, BSN, RN
Optimizing Perioperative Care for
CHILDREN AND ADOLESCENTS with Challenging Behaviors MCN
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ediatric hospitals care for a wide variety of children and adolescents who bring with them individual medical needs as well as physical, social, and emotional strengths and challenges. There is an increasing population of children and adolescents with developmental disabilities being admitted for surgical procedures. Through analysis of data on children aged 3 to 17 years compiled in the 1997–2008 National Health Interview Survey, researchers from the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration determined the incidence of any developmental disability had increased from 12.84% to 15.04% over 12 years (Boyle et al., 2011). This means that about one in six children has one or more developmental disabilities (CDC, 2013). As prevalence rates rise, nurses must become knowledgeable about the unique challenges of this population so that care can be individualized for the patient and family (Scarpinato et al., 2010). The CDC defines developmental disabilities as a “group of conditions that result in impairment in physical, learning, language, or behavior areas” (CDC, 2013). These conditions become apparent in infancy or childhood, are present throughout the lifetime, and can include Down syndrome, cerebral palsy, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), hearing or visual impairment, or other developmental delays (Boyle et al., 2011). Previous research has shown that children with these diagnoses experience more hospitalizations than other children and have difficulty coping and cooperating in healthcare settings and hospitals (Drake, Johnson, Stoneck, Martinez, & Massey, 2012; Johnson & Rodriguez, 2013; Scarpinato et al., 2010). Handling hospitalization, a new diagnosis, or surgery can be a challenge for most children and families. Children must cope with fear and anxiety related to strangers, separation, pain, loss of control, and new routines (DeMaso & Snell, 2013). Most children have a variety of ways to deal with the stressors associated with hospitalization. Children who have developmental disabilities and behavioral issues may have a more difficult time coping with hospitalization than typically developing children (Thompson & Tielsch-Goddard, 2014). For these children, their behaviors during a hospitalization are one means of communicating distress when there is a disruption in routine (Johnson & Rodriguez, 2013). Trying to elicit cooperative behaviors from these children during a healthcare visit can be challenging and the trial-and-error approach usually used by providers often results in failure (Drake et al., 2012). Children who have developmental disabilities such as ASD, Down syndrome, or ADHD can have difficulty with sensory processing, using adaptive behaviors, cog-
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nition, and socialization (Demopoulos, Hopkins, & Davis, 2013; Tonge, 2011). They may have difficulty when encountering new environments, changing daily routines and activities, interacting with other people, and understanding what is happening to them (O’Donnell, Deitz, Kartin, Nalty, & Dawson, 2012). Not being able to process an environment’s visual and auditory information can make it difficult to appropriately handle new situations and regulate emotions. When confronted with an unfamiliar and potentially threatening environment, such as the hospital, their ability to cope can be compromised (O’Donnell et al.). Prior research has shown that children with developmental disabilities experience an increased burden of unmet needs and decreased satisfaction with care received during a hospital experience when compared with typically developing children (Drake et al., 2012; Johnson & Rodriguez, 2013; Kopecky, BroderFingert, Iannuzzi, & Connors, 2013; Scarpinato et al., 2010). They may react to the frightening hospital environment with aggressive behaviors that include tantrums, property destruction, hitting, kicking, biting, throwing furniture, and running away. These behaviors are stressful for parents, other family members, and healthcare providers, and may also pose a significant safety concern. Unfortunately, previous negative hospital experiences can influence the child’s behavior at subsequent visits. Thus, it is important for healthcare providers to be aware of an individual child’s typical responses and proactively design interventions to prevent these challenging behaviors (Drake et al.).
THE NEED FOR INDIVIDUALIZED ASSESSMENT OF THIS VULNERABLE POPULATION WAS RECOGNIZED BY THE PERIOPERATIVE NURSING STAFF.
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Identification of the Problem The number of children with developmental disabilities was growing in our setting, and caring for these children in the perioperative environment was becoming increasingly demanding for nurses in the Same Day Surgery department. Nurses expressed worry that it was not always possible to deliver the safest and most effective care for this population. One nurse recalled a specific patient encounter illustrating this concern. The nurse had gone to the waiting room to bring a patient back into the preoperative area and as she greeted the adolescent patient, he offered his hand to shake saying, “My name is John and I have Asperger’s. Do you know how to take care of me?” The nursing staff discussed the encounter and recognized an opportunity to improve the approach to providing individualized care for these children who have special developmental or behavioral needs. This quality improvement project was designed to develop an adaptive care plan (ACP) for patients with challenging behaviors as an intervention to improve the surgical experience for the children and their families.
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This project was conducted in the Same Day Surgery department of St. Louis Children’s Hospital. The daily census averages 40 to 50 patients typically ranging in age from birth to 18 years. Surgeons and proceduralists represent 10 specialties. The surgery schedule is prepared 3 days in advance and finalized at noon the day ahead. Nurses from same day surgery contact families by phone the day prior to surgery to ensure that all information is current in the medical record and to answer any scheduling questions the families may have at the time. A multidisciplinary committee was formed to develop an intervention that would directly address the need to individualize perioperative care for this population. The team included nurses from the preoperative and postoperative areas, the operating room (OR), and same day surgery, along with a child psychologist, a child life specialist, an anesthesiologist, a nurse practitioner, an occupational therapist, a clinic nurse, and a parent representative. One parent in particular, who was especially knowledgeable and active in advocating for children with autism, was invited to join the team. We realized that a knowledgeable, caring parent advocate was a key stakeholder in designing a positive patient experience. An extensive review of the literature was conducted to gain knowledge about characteristic behavioral responses of this population and potential evidence-based interventions that could be implemented. The team reviewed the typical patient flow from clinic visit to discharge, searching for opportunities to better identify and proactively plan for the children. Discussions included past experiences that resulted in frustration as well as experiences that had gone well. This work resulted in identification of barriers to a positive experience within the perioperative environment: lack of knowledge of an individual patient’s mode of communication, existing triggers that might cause aggression in specific patients, unrecognized parental stressors, a need to individualize what may be absolutely necessary in individual physical assessments, factors contributing to overstimulation in the environment, lack of sufficient time with patients related to staffing, prolonged wait times, excessive noise, number of healthcare providers, and a lack of knowledge of effective strategies to promote calming unique to each patient. The parent team member helped to identify positive aspects personally experienced within the perioperative setting: her child was addressed directly during registration; the certified registered nurse anesthetist spent time with him preoperatively to establish familiarity; the child life specialist created a calm and nonthreatening presence; and appropriate aspects of physical assessment were waived by the anesthesiologist due to his sensory issues. All of this information helped the team determine a number of areas of focus for care planning and management.
Developing the Intervention After reviewing published screening tools and examining those from two other hospitals, the team developed a specific ACP screening tool reflecting identified needs and goals (Figure 1). It was anticipated that some parents
would complete the tool during a clinic visit. However, if the need for an ACP was determined by the same day surgery nurse during a preoperative phone call, then that nurse would review the tool with the family. Pediatric nurse practitioners could also identify the need during the previsits scheduled for patients with complex medical histories in the preoperative assessment clinic. During these previsits, the families are seen by an anesthesia provider, making this an ideal opportunity for planning for appropriate adaptive care. The tool, printed on colored paper so clearly visible, would be placed in the patient’s chart with a second sheet for the preoperative nurse to document any additional useful information regarding the specific care needs that may be helpful to other caregivers the patient would encounter that day. The ACP was trialed over a 6-month period with 68 families.
Interventions Addressed Within the ACP Environment
The team discussed the need to be mindful of assigning these patients to preoperative rooms where it would also be possible to remove or disguise medical equipment contained within the room that would be a potential stressor (Nelson & Amplo, 2009; Scarpinato et al., 2010; Thompson & Tielsch-Goddard, 2014). Families have indicated that sensory needs of these children can elicit unpredictable responses in an unfamiliar environment and that managing these reactions can be very challenging (Case-Smith, Weaver, & Fristad, 2014). Room lighting levels, provision of calming music, and availability of tactile objects that may be helpful were considered for use to improve the stressful hospital environment (Johnson & Rodriguez, 2013). An effort was made to consistently assign these patients to quieter rooms but that was not always possible. However, it was found that simply closing the curtain could sometimes calm a child in an otherwise busy, overwhelming environment. Decreased Wait Time
Patients typically arrive 90 minutes prior to surgery with the majority of that time spent in an individual preoperative room. This exposed the patient and family to an unfamiliar environment for an extended period and without individualized interventions did not contribute to successful adaptation (Nelson & Amplo, 2009). The goal to coordinate shorter wait times was identified as a means to decrease the stress experienced by many of these patients. The reduced amount of time therefore available to prepare the child and family for surgery implied the need for well-timed and synchronized care. Staffing
As the charge nurse prepared assignments for the following day, an alert from the same day surgery nurse after the preoperative phone call or anesthesia provider of a patient requiring an ACP was critical. Ideal staffing for these patients is one to one, allowing the nurse to fully implement the care MCN
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Figure 1. ADAPTIVE SCREENING TOOL. Adaptive Care Screening Tool
In order to provide the best possible care for your child, please help us by answering the following questions: Parent/Caregiver providing information: ______________________________________________________________________ Patient’s preferred name: ____________________________________________________________________________________ How does he/she typically do at medical visits, previous surgeries, past hospitalizations? ________________________ _____________________________________________________________________________________________________________ What has worked well in the past? ____________________________________________________________________________ Does he/she interact well with people/strangers? Does he/she become easily agitated or aggressive?
■ Yes ■ Yes
■ No ■ No
■ Sometimes
Please describe his/her behavior in stressful situations: ________________________________________________________ _____________________________________________________________________________________________________________ What do you typically do to help your child relax in stressful situations? _________________________________________ _____________________________________________________________________________________________________________ What is the best way to communicate with your child? _________________________________________________________ _____________________________________________________________________________________________________________ What other ways of communication does he/she use or prefer? (e.g., pictures, words, etc.) ________________________ _____________________________________________________________________________________________________________ Does your child understand what is said? Does he/she typically make eye contact when communicating? Is he/she sensitive to certain things?
■ Yes ■ Yes ■ Yes
■ No ■ No ■ No
■ Sometimes ■ Sometimes
If yes, please tell us how he/she reacts to the following:
■ Sights: ________________________________________________________________________________________________ ■ Sounds: _______________________________________________________________________________________________ ■ Tactile/touch: __________________________________________________________________________________________ ■ Smell: _________________________________________________________________________________________________ ■ Taste: _________________________________________________________________________________________________ What items/methods are typically used as a positive reinforcement for him/her? _________________________________ _____________________________________________________________________________________________________________ Has your child ever been prescribed a medication for calming? If yes, what? _____________________________________ _____________________________________________________________________________________________________________ How does your child express that he/she is in pain? ____________________________________________________________ _____________________________________________________________________________________________________________ Estimated Weight: ___________________________________________________________________________________________ Any other information you would like to share about your child that would be helpful in his/her care? _____________ _____________________________________________________________________________________________________________ _____________________________________________________________________________________________________________
Signature: _________________________________ Date/Time: __________________________
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plan. The admitting preoperative nurse could then be able to maintain communication with all other caregivers to coordinate care. Providing a consistent nurse and decreasing the number of healthcare providers helps to establish a routine within the perioperative area and build trust with the patient and family (Nelson & Amplo, 2009; Scarpinato et al., 2010). Families were also asked to have two family members accompany the child on the day of surgery whenever possible, providing additional assistance and support. Education of Staff
To familiarize and educate nurses and other staff members in the perioperative area and the outpatient clinics about the project, the team created a presentation incorporating developmental aspects of behaviorally challenged children, the purpose of the project, and how to use an ACP. During presentations at surgical unit staff meetings, expanded time was planned for discussions regarding realistic implementation of the ACP in that setting. Support for successful execution of the plan needed to be firmly established among all caregivers to achieve the goal of safe, individualized, and targeted care for these patients (Thompson & Tielsch-Goddard, 2014).
People First Language
The parent team member discussed the need for caregivers to use word choices that are respectful to people with disabilities, and the team psychologist provided further insight about the type of rapport that can be established based on thoughtful communication. The use of People First Language encourages caregivers to speak to the person and not to the disability. This is a sentence structure that recognizes the person first and then the condition making the disability a secondary attribute, rather than a characteristic of the person’s identity (Collier, 2012; Zeitzer, 2013). For example, a comment such as “She has autism” rather than “She’s autistic” is crucial in exchanges with these patients and families. Becoming aware of and using People First Language has been challenging but seeing the impact has demonstrated its importance. Additional Hospital Departmental Resources
Once a child needing an ACP was identified, continual and consistent communication throughout the perioperative experience was vital. The screening tool supported communication with the family, and nurse practitioners acted as a link among families, staff nurses, and physicians. This approach was especially helpful when determining the need for a modified physical assessment. Routine activities in the perioperative setting such as a general physical assessment or obtaining vital signs can be very upsetting for children with developmental disabilities (Drake et al., 2012). Thus, for some select patients, deferrals of specific vital signs in the preoperative area or obtaining an admission weight at home were found to be appropriate strategies to achieve optimal care outcomes.
Various supportive resources easily accessed within the hospital were included as potential helpful interventions for these patients. A child life specialist who works in the perioperative unit daily is skilled at identifying patients who could benefit from appropriate therapeutic interventions. Provision of a calming presence and distraction techniques are extremely helpful for this patient population (Nelson & Amplo, 2009; Scarpinato et al., 2010). Some of the families coming to the hospital indicated that their child was receiving Sensory Integration therapy as a component of treatment. This is a commonly used therapy for children with developmental disorders delivered by occupational therapists, although the research base for its effectiveness has not been firmly established (American Academy of Pediatrics, 2012; Creasey & Finlay, 2013). Weighted blankets are a frequently used intervention within this treatment method, so a lead apron from the radiology department was made available. Occupational therapists made additional tactile objects accessible as needed.
Proactive Care Planning
Parents as Experts
Some families expressed anxiety regarding the physical difficulty of bringing stressed children to the unit, highlighting the need for additional methods of assistance. Anesthesia providers evaluated the need for preoperative medication administration by parents prior to arrival to the hospital. The screening tool also assisted in determining if a modified arrival plan would be helpful for an individual patient.
Family-centered care is a philosophy that frames our nursing care delivery model. It is an approach to care in which patients, families, and the healthcare team are partners and work together to create the optimal plan of care for each individual child (Johnson & Rodriguez, 2013; Kuhlthau et al., 2011). Thus, although the information on the screening tool would contribute to informed, coordinated care provided by the healthcare team, the expertise of the family present with the child was considered another critical element of the plan. Family members are the best source of information on the day of surgery about how to care for their child. We have found that if we listen to them and take cues from them regarding interaction with their child, we then affirm their abilities and create an environment of team work and cooperation. Families of children with developmental disabilities often need additional support while being regarded as experts in the care of their child (Avis & Reardon, 2008).
Communication Among Healthcare Team Members
Door Symbol
The child life specialist designed a “Quiet Zone” sign for the patient’s door. This sign would alert anyone entering the child’s room of the need to consult the ACP tool contained in the chart before interacting with the patient (Johnson & Rodriguez, 2013). The family’s approval was secured before placing the sign on the door as part of the care provided. The family’s continued involvement in the plan of care as well as the need to meet the expectations of the ACP was essential to its success.
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PERIOPERATIVE NURSES OFTEN RELY ON PHYSICAL AND BEHAVIORAL INDICATORS TO ASSESS THE LEVEL OF PAIN AND ANXIETY A CHILD MIGHT BE EXPERIENCING BEFORE AND AFTER A PROCEDURE.
Evaluating the Practice Change A brief evaluation tool was used to determine the effectiveness of the ACP. At the time of discharge, parents were asked to rate their experience relative to their expectations and to share what could have been done differently to improve a future experience for their child. As part of the routine telephone follow-up with families the day after surgery, general satisfaction about the success of the ACP was elicited if the survey had not been completed prior to discharge. The brief survey included an overall evaluation of care related to the ACP on a one-to-five scale, with five indicating care exceeded expectations and one signifying expectations were not met. Nurses included a question asking additional information from parents to improve future experiences as well as any other parent comments because some of these patients would be returning to the hospital for future procedures. During the pilot period, 33 (48.5%) of 68 parents who returned the survey at discharge rated their experience as a five and 45 parents (67%) indicated either a score of four or five. Although most parents did not provide any additional written feedback, the verbal responses received were positive with the most consistent comment being that parents would not change any aspect of the care delivered.
Beginning Success Stories One indication of the success of the ACP is the story of a 10-year-old boy with Down syndrome admitted for a repeat surgical procedure. When the same day surgery nurse saw his name on the surgical schedule, she recalled the behavioral challenges during his previous visit and took steps to initiate the ACP. During a phone call the day before admission, his mother reported that he becomes increasingly agitated when placed in an examination room or any room with a stretcher and suggested that vital signs and preoperative assessments be completed in the waiting area or play area and that the stretcher be removed from his room. She also revealed that he was extremely frightened of hospital scales. Knowing an accurate weight would be needed on the morning of surgery, the nurse practitioner consulted with the anesthesiologist and suggested parents weigh him at home. After further discussion the healthcare team developed the following individualized plan: the former nurse would care for him because of her pre158
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vious knowledge of and relationship with the family; parents would weigh him at home and the anesthesia provider would accept this weight; his preoperative wait time was shortened to 45 minutes; most of his preoperative workup would be completed in the playroom; preoperative vital signs would be deferred if he became extremely anxious with attempts to obtain this information; the stretcher would be removed from his room until needed for transport; a child life specialist would engage him in calming activities in the playroom until transport to the OR; he would not need to put on hospital pajamas until sedation was effective; and a parent would be present in the OR during induction. This plan went very well and his parents were pleased overall with the experience, stating that he had done so much better than during previous visits. Another example of the ACP success was related by a nurse providing care for a teenage male patient with autism and Down syndrome who previously had become agitated in the postanesthesia care unit (PACU) when waking up from anesthesia. The postoperative period was very stressful for this patient, his father, and the nursing staff. During a more recent admission, the recovery nurse was able to review information on his ACP prior to his arrival in the PACU and consult with the surgeon and anesthesia provider. As a result, the patient’s father was called into the PACU prior to wake-up, which is not usual practice. Research has suggested that the presence of a parent can significantly reduce anxiety in these children in the recovery area (Hache & Sun, 2009). The patient awakened, his father was there to calm him, and he was subsequently dressed and discharged to home from the PACU. His father was pleased with the experience of seeing his son successfully cope with the hospitalization and being discharged in a time frame that worked well for this family.
Future Plans Although there has been a significant improvement in the care provided for this population, obstacles to full implementation at all times remain present. Concerns related to a lack of consistency among caregivers, difficulty maintaining support from some staff members due to the increased effort required, inconsistent identification of patients who would benefit from an ACP, ability to always staff appropriately to support delivery of an ACP, and lack of ideal physical space for patients with sensory challenges have been identified. As the team reflects upon the progress and challenges of maintaining this initiative, there is clear acknowledgment of the need for consistent assessment and modification of the ACP screening tool and process. Further work with the referring outpatient clinics on use of the screening tool helped to ensure that all patients who could benefit are identified prior to the day of surgery. The same day surgery nurses worked to reeducate the outpatient clinic nurses so that the screening tool was successfully implemented. This reeducation effort provided the clinic staff with an opportunity to learn more about the patients they are caring for and ways that they too could improve their care delivery.
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SUGGESTED CLINICAL IMPLICATIONS • As prevalence of developmental disabilities has increased, all nurses must have the knowledge and skills to be able to provide appropriate perioperative care for children who may have challenging behaviors. • Use of an adaptive care planning tool can alert the nurse to a child’s specific needs and establish the basis for meaningful communication and planning with the family. • Development of a multidisciplinary team is necessary for planning, coordinating, and monitoring care and resources for this population.
After reporting outcomes from this process improvement project in general leadership and staff forums, several inpatient units expressed interest in learning more about using the ACP with inpatients. In the perioperative area a paper version of the ACP was possible, but the inpatient areas document exclusively in an electronic medical record. To make the tool usable for inpatient admissions, work with clinical information systems staff was needed to build the assessment tool and ACP into the inpatient electronic clinical documentation system. Incorporating the tool in the electronic medical record will ensure that the information is available from visit to visit and enable the healthcare team to deliver consistent individualized care.
Conclusion The ACP is a tool that has increased the quality and safety of care provided for patients with challenging behaviors. Its use continues to expand beyond the perioperative area and has been embraced by nurses, support staff, nurse practitioners, anesthesia providers, and physicians across our organization. Providing the healthcare team with a tool that customizes care for the patient helps us carry out our hospital’s mission of “doing what is right for kids.” ✜ Karen Balakas is a Research Manager, St. Louis Children’s Hospital, St. Louis, MO. She can be reached via e-mail at [email protected] Carol S. Gallaher is a Staff Nurse, Perioperative Services, St. Louis Children’s Hospital, St. Louis, MO. Carra Tilley is a Manager, Perioperative Services, St. Louis Children’s Hospital, St. Louis, MO. The authors declare no conflict of interest.
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