According to the Centers for Disease Control and Prevention, 1 in 6 children living in the United States has at least 1 developmental disability.1 Developmental disabilities encompass a wide range of conditions, including attention-deficit/hyperactivity disorder, learning disorders, intellectual disabilities, autism spectrum disorder, moderate to profound hearing loss, blindness, stuttering, seizures, and cerebral palsy.2 Children with developmental disabilities are more likely than typically developing children to experience health care encounters.3 Although health care encounters can be difficult experiences for all children, many children with developmental disabilities have increased difficulties and struggle to cope and cooperate with health care appointments, expressing this through challenging behaviors. Challenging behaviors during appointments include difficulties complying with the demands of medical examinations and procedures, self-injurious behaviors, hyperactivity, aggression toward others, and destruction of property4; unfortunately, this may result in missed appointments and delayed care.5 Furthermore, many health care providers, including physicians, nurses, and allied health professionals, do not feel prepared to handle such behaviors during appointments.6 Parents and health care providers both agree that challenging behaviors prevent children from having productive health care encounters.7 Medical staff are in the position and well suited to adapt the overall health care experience (including the physical environment) to allow these children access to necessary medical care.
Therefore, primary care physicians and other medical staff can alter the way they provide services to parents and children with developmental disabilities with strategies that augment family-centered care. Within family-centered care, medical staff engage families as partners, allowing them some control in the medical decision-making process.8 From the child life perspective, many family-centered strategies have been effective in helping children with developmental disabilities cope during health care encounters, including distraction, coping strategies, positive reinforcement, and visual supports. A relatively new strategy, adaptive care plans (ACPs; Fig 1), assists children with developmental disabilities to cope with health care experiences. These plans initiate a collaborative process between health care professionals and parents to create plans that individualize the health care experience.
ACPs: A Child Life Specialist’s Perspective
ACPs were created in 2009 at Cincinnati Children’s Hospital Medical Center by a team of child life specialists to address the unique needs of children with developmental disabilities. ACPs were designed to aid in communication between caregivers and the health care team by using a family-centered approach. Care is planned to facilitate less traumatic and more productive health care encounters through collaboration with parents and staff. Imbedded in these plans are personalized preparation, adapted protocols, and specialized support strategies.
Children with a current or pending diagnosis of a developmental disability, who also have a difficult time coping or cooperating with some aspect of health care are eligible for an ACP (Fig 2). A child life specialist assesses an eligible child using a validated tool to evaluate a child’s likelihood of experiencing distress with the demands of a procedure or examination by using the Psychosocial Risk Assessment in Pediatrics (PRAP).9 Because there are no other validated assessments or tools that assess psychosocial risk in a pediatric population, the PRAP is the preferred assessment of a child’s vulnerability in the health care setting. In conjunction with a parent or caregiver, a child life specialist asks the caregiver structured interview questions (Fig 3) to create an individualized ACP for the child to reduce distress and increase coping. These plans are of no cost to the family. The plan includes information about a child’s past health care experiences, stressors and reactive behaviors, how the child adapts to changes, how the child prefers to communicate and receive communication, sensory sensitivities, successful coping strategies, pain responses, and interests (motivations and reinforcement). Once a plan is developed, it is placed in the child’s electronic health record, allowing all health care providers to review the care plan, identify stressors, and make adaptations to their care. When anti-anxiety or behavioral medications are indicated for children, child life specialists share their in-depth knowledge of the child’s health needs with a prescribing provider who is able to collaborate in managing the child’s care.
When an identified child or adolescent is scheduled to come to the medical center, a child life specialist contacts his or her caregiver and develops a specific support plan for the upcoming visit, taking the following factors into consideration: specific stressors related to the visit (waiting, transitions, vitals, etc), expectations for the patient (vitals, examination, etc), safety concerns, and what supports are needed during the visit. Once a plan is developed, it is communicated to the interdisciplinary team that will encounter the patient to best support the child or adolescent’s unique needs. Because parents are instrumental in the development and implementation of ACPs, their perspective is invaluable.
ACPs: A Parent’s Perspective
As a parent of an 18-year-old young man with a cognitive disability and complex medical needs, having an ACP has been essential. My son is an outgoing, hilarious, and charming teenager who also has an intellectual disability, cardiac arrhythmia, and severe anxiety. Historically, he has struggled with anticipatory anxiety and exhibited each of the challenging behaviors described above in a variety of medical settings. Therefore, we were grateful to be offered support from the child life team as early as 6 years of age during cardiology visits where he was frightened by electrocardiogram and echocardiogram procedures. During cardiology encounters, his heart rate would soar into the 180 to 200 range, creating additional anxiety in the medical staff. The necessary urgent response from the medical team did not have a calming effect on my son or our family. Although it was not formally labeled as an ACP at this early stage (2006), this was the start of a customized plan prepared before office visits; the child life specialist would contact our family, review my son’s strengths and worries, and create a plan for managing his upcoming appointment or procedure. With this plan in place, we and the medical team were prepared when his anxiety prevented him from complying with procedures and led to predictably elevated heart rates.
In its current iteration, my son’s ACP informs the medical team that he becomes stressed when confronted with items that are sticky (ie, tape and electrocardiogram leads), vaccinations, blood draws, and with unpredictable experiences (including unexpected delays and new people). It also informs the medical care team which strategies help him feel more comfortable. For example, because of his social nature, humor, and verbal strengths, he copes best when he is able to get to know the medical staff and engage in social banter before the more stressful aspects of his health care visit.
Over a recent 15-month period, my son required 3 elective surgical procedures. This was a new health care environment, and his ACP was modified by an anesthesia nurse practitioner and child life specialist to support his needs. Before the first scheduled surgery, I met with the anesthesia nurse practitioner to discuss medications for his anxiety and arrhythmia and specific concerns. As part of the ACP, the nurse practitioner reached out to his cardiologist, psychiatrist, and preassigned anesthesiologist to discuss what medications should be taken at home the day of the procedure and what could be given in the preoperative area by the anesthesia team to help manage his anxiety. Additionally, we developed a plan to prepare him for induction. He was able to practice at home with a mask that was similar to the one that would be used by the medical team and on the day of the procedure. My son was also able to choose a scent for the mask. The child life team created a personalized preparation book that included pictures of each procedural area so he could learn about what was going to happen and what to expect. We reviewed this several times to help him understand and then cope with the procedure.
As described above, before each surgical or medical encounter, my son’s ACP has been reviewed and individualized to support his needs. One example of the benefit of the collaborative approach using the ACP occurred during the second surgical procedure when the operative team gave him a flu shot and drew his blood for labs that he needed for another provider while he was under anesthesia. This was a huge benefit to my son, our family, and the pediatrician because my son is unable to cooperate in the pediatrician’s office when he requires routine vaccinations or blood draws, because of his fears of needles and Band-Aids.
Although some experiences have been flawless, others have been difficult, yet improved by the support we received. For example, during the third surgical encounter, he was more anxious than usual and exhibited challenging behaviors on arrival to the hospital. Additionally, there were unexpected delays in the surgical schedule. Because of the preparation of the ACP, we were continuously assisted with management of stress and behaviors. He was given additional medications for anxiety, offered ongoing child life interventions, and an opportunity for his brother to stay with him when my own presence was not calming. Although his behavioral outbursts were not entirely averted, the ACP acknowledged and normalized the experiences for our family, creating an opportunity for us to experience an unexpected calm during this storm. By drawing on my son’s strengths and acknowledging his difficulties during medical encounters, the ACP has helped him to behave more often according to his gregarious and engaging self.
Caregivers as Partners: A Child Life Specialist’s Perspective
Anecdotally, caregivers have reported to child life staff that care received after the implementation of an ACP is less distressing for the child and the entire family. Additionally, because of consistent, proactive, and individualized care, parents have stated that their child’s ability to cope and cooperate with medical encounters has ultimately increased. In our hospital, the number of ACPs created each year has continued to grow. In the first year of the program, there were 47 ACPs. The current number of ACPs created each year is around 300 and since the start of the program, over 2000 ACPs have been developed. As the program has grown, members of the family advisory committee have been involved in process improvement work, ensuring family-centered care. Seven other health care organizations in the United States have requested mentoring and guidance as they develop similar programs in their health care institution. Many mentoring requests were the result of child life professional networks, whereas other requests have come from interdisciplinary professions, including physicians, psychologists, and nurses.
Considerable resources are required to implement and sustain ACPs, such as child life personnel and specialized materials. However, at the heart of the success of ACPs are the professional relationships across all points of care. Extensive education has been provided with health care staff at every level of the organization on the use of ACPs and implementing recommendations. This has allowed staff to feel more comfortable and confident in the care they provide to patients who may exhibit challenging behaviors related to the stressors of medical treatment. Anecdotal reports suggest that health care staff have come to rely on ACPs to help guide their clinical interventions with children, and that the accommodations in the plans allow health care staff to focus on providing needed health care and decrease time spent addressing challenging behaviors. From a risk management perspective, when staff are prepared and a comprehensive plan is in place, a child with a developmental disability is more likely to have a safe and successful medical experience.
The goal of the ACP is to partner with caregivers to provide proactive, interdisciplinary medical care. The program works directly with a range of health care staff to prepare the medical team when caring for children with developmental disabilities. Most notably, families report to child life specialists that with the ACP, their child is receiving routine, preventive care, which they may not otherwise have received.
Ms Liddle conceptualized the article and drafted the initial manuscript; Ms Birkett and Ms Bonjour drafted the initial manuscript; Dr Risma drafted the parent perspective; and all authors reviewed and revised the manuscript, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.
FUNDING: No external funding.
We thank Abby Hess, APRN, DNP for her encouragement and manuscript editing as well as Kate Shamszad, MS, MPH, CCLS for her continuous support of adaptive care initiatives and families.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The Psychosocial Risk Assessment in Pediatrics is licensed and sold by Cincinnati Children’s Hospital; the authors have no financial ties to the sales and distribution, and have indicated they have no financial relationships relevant to this article to disclose.