The number of children with complex medical conditions in the United States is estimated at 400,000 (Berry, 2015) to 3 million (Vestal, 2015), the wide range due to varying definitions of "medical complexity." This group of children is "one of the smallest, yet fastest growing populations of children (Berry, 215, p. 1). Many of these children are discharged from the hospital dependent on medical technology. Proper family education prior to discharge increases parent/caregiver comfort with caring for their child at home with a new medical device and has the potential to decrease readmission and emergency department visits. Providing parents/caregivers with the appropriate knowledge and skills can empower them to care for their child with a medical device, and is imperative to improving patient care and overall outcomes. Such education is also a critical aspect of providing comprehensive patient- and family-centered care.
The Institute for Patient- and Family-Centered Care's (IPFCC) Partnership Award (see Figure 1) recognizes innovative partnerships among patients, families, and healthcare professionals. In 2017, NewYork-Presbyterian Phyllis and David Komansky Children's Hospital/Weill Cornell Medical Center was the Partnership Award recipient, for its innovative "Simulation Discharge Program (SDP)," a new patient education initiative that helps family/caregivers of technology-dependent children prepare for hospital discharge (see Figure 2). The SDP was the result of collaboration between the Chair of Komansky's Family Advisory Council and a Pediatric Hospitalist.
Personal Experience as an Impetus
Five years ago, Courtney and Naveen Nataraj's youngest son, Iver, was born 14 weeks prematurely and spent five months at the Komansky Children's Hospital NICU at NewYork-Presbyterian Weill Cornell Medical Center. He was discharged as a healthy baby, but within a month, was admitted to the PICU for difficulties with his breathing. Soon afterwards, Iver developed severe reflux and oral aversion that when combined with his chronic lung disease led to a rapid deterioration in his medical condition. Iver became a "frequent flier" at the hospital.
During a two-week hospital stay, Iver was diagnosed with failure to thrive, and his doctors placed an NG tube to ensure he was receiving adequate nutrition (see Figure 3). One day before his first birthday, Iver was discharged home with a feeding pump on a 24/7 feed, with the hope that the slow continuous feed would be easier for him to tolerate.
On Iver's first night home, Courtney became extremely nervous as the evening approached. As she explained it:
I thought I was ready to go home, but now that I was home, I was not as confident without having a nurse to back me up. I was exhausted from our latest hospital stay and felt alone. At three o'clock in the morning, Iver's feeding pump alarms were sounding, and I tried everything I could remember to fix it, but nothing seemed to work. I did not know whom to call to help me. I was in a panic.
This feeling of anxiety is all too common when parents are asked to be totally responsible for providing home care for their technology-supported child, with a newly prescribed or placed medical device, by themselves at home. Courtney wanted to feel confident in her ability to care for Iver in every situation, and she knew more could be done for families like hers.
Within six months of this experience, Courtney joined the Komansky Children's Hospital Family Advisory Council. As a result of her own experience, Courtney understood how difficult a hospital stay can be for families, and she initially focused on providing support to families whose children were hospitalized. Soon she began partnering with the hospital and Cornell Medical College by co-teaching medical students, residents, and nurses through the Family Advisory Council's Family Faculty program. She joined many of the hospital's committees, enabling her to share her experiences and be the voice for families. In 2015, she was elected Chair of the Family Advisory Council. As Chair, Courtney became involved in quality improvement initiatives. She also shares her experiences about transitioning to home with a child needing technology support at medical conferences.
Iver is now thriving (see Figure 4). When asked about her experience parenting Iver to date, Courtney states the following:
I look back at the very long journey that my son has had, and it has made him who he is and who we are as a family today. Even though we have gone through some very tough times with Iver, I have no regrets. I have been exhausted and pushed to my limits, but what I have learned is that having as much knowledge as I can of my son's condition and learning how to properly take care of him at home on my own, while also knowing when to seek medical help, translates into both confidence in myself and a better outcome for our son.
Courtney believes that all families should have the opportunity to feel confident about how to care for their children who are technology-dependent prior to leaving the hospital.
The Power of Partnership
While touring the hospital's Simulation Center, everything "came together" for Courtney. She realized that simulation training prior to discharge could be a mechanism to help families and caregivers increase their comfort and confidence in assuming home care for children with medical technology and/or newly placed medical devices, such as tracheostomies and feeding tubes.
To move forward with this idea, Courtney found an enthusiastic partner in Normaliz Rodriguez, MD, then a Pediatric Hospitalist at Komansky. Dr. Rodriguez conducted medical simulation education, aimed at residents and nurses, at Weill Cornell's Medical College. She understood the positive impact of this type of education and believed it could be used effectively to teach families how to care for their children with special medical needs.
Program Development And Implementation
Dr. Rodriguez and Courtney Nataraj brought together a multidisciplinary team, creating The Simulation Discharge Planning Committee, which met regularly for about a year and developed the program. In addition to Courtney Nataraj and Dr. Rodriguez, the team included a pediatric emergency medicine physician who is Director of Weill Cornell Medicine NewYork-Presbyterian Simulation Center; a pediatrician who is Director of Quality, Patient Safety, and Family Engagement; and a pediatric pulmonologist who is Director of the Weill Cornell Pediatric Sleep and Breathing Disorder Center; and several representatives from the hospital's Pediatric Ear, Nose and Throat, Nursing, and Social Work Departments.
The Committee initially chose to develop an educational program for parents/caregivers of children with newly placed tracheostomy tubes. Knowing the complexities of tracheostomy care and the need for a comprehensive educational program, the Committee's mission was to create a program that would better prepare and empower families to care for their children with tracheostomies at home. The Committee evaluated educational materials already provided to families, and considered parent feedback concerning content and implementation. The Committee's goal was to add a hands-on educational experience using high-fidelity simulation to the existing educational program.
Under the protocol for the new program, all families of children receiving new tracheostomies are referred to the Simulation Center for education. Education is then scheduled at a family's earliest convenience following initial tracheostomy device placement. Education is provided jointly by a simulation education expert and a member of the Family Advisory Council. Both members of the education team are always present to provide a well-rounded educational experience for families, offering both medical and parent-focused information concerning how to care for the child's newly placed medical device.
The Simulation Discharge Program (SDP) has two components: simulation-based education where families learn about tracheostomy care on high fidelity simulators (see Figure 5), and parent-to-parent support provided by Family Advisory Council members in person and via a telephone platform. The SDP enhances previously existing education programs for families/caregivers by offering direct simulation education for performing routine care for the child with a new medical device, recognizing and managing minor medical problems associated with the device, and knowing when to seek medical help. Information provided in the simulated experience is then reinforced by the bedside nurse.
When Dr. Rodriguez first agreed to work with Courtney Nataraj on the SDP, she understood the importance of the program but did not realize its true impact until she met with the first families. Once the program was developed, its initial referral was a family that had been described by other hospital personnel as "difficult" and "not open to learning." In fact, many staff who had worked with the family were concerned the parents would never be able to take their daughter home, and believed it was inevitable that she would go to a long-term care facility.
The patient's mother seemed defensive when first meeting with Dr. Rodriguez and Courtney. As the conversation progressed and the discussion turned to the skills the program hoped to empower her with, the mother's demeanor changed completely. She realized that someone finally understood the challenge of caring for her daughter. Most importantly, someone believed she was capable of providing care and taking her daughter home. Dr. Rodriguez recalls:
Courtney and I left that night with tears in our eyes. It was then that I knew this program was truly profound. In that moment, I realized the incredible impact we could have on the lives of others. There is power in knowledge and education. Through this program, we are empowering parents to take charge of the care of their children. And we are helping them gain the confidence to know they can really do this! Simulation education is presently used for medical personal, nurses, and medical students to learn and reinforce varied skills. This type of education is a bridge between knowledge acquisition and real-life implementation. As healthcare professionals, we benefit extensively from this type of deliberate practice. Parents are often overwhelmed with the idea of taking a child home with a newly placed medical device. They are afraid of making a mistake that might irreparably harm their child. Many do not feel confident dealing with this new situation and often do not feel they can voice this fear. No parent wants to "learn" on their own child. Simulation education can provide the same benefits for parents/caregivers as it does for healthcare professionals. It provides parents with a safe learning environment where they can ask questions and repeat techniques without the fear of hurting their child in the process. Empowering parents by increasing their skill set and improving their confidence when caring for their child should be our universal goal. Simulation education is the key to the goal.
Program Evaluation and Expansion
SDP is part of a large-scale research project that evaluates the program's efficacy in improving caregiver comfort, knowledge, and knowledge retention when managing a child's new medical device. Data are collected both pre- and post-educational intervention by a parent/caregiver self-survey and direct observation by the SDP team. The team also administers follow-up surveys via telephone for a period of six months. Parents/caregivers are simultaneously enrolled in the hospital's Parent-to-Parent support program during this period for peer-to-peer support.
Dr. Rodriguez is presently a fellow in pediatric emergency medicine at a different hospital. None-the-less, she has maintained her privileges at Weill Cornell Medical College and often travels to continue her work with the SDP. Dr. Rodriguez and the Committee are presently developing G-tube education and expanding the program to central lines, ventriculoperitoneal (VP) shunts, and other medical devices. Additional goals for the program include shortening hospital length of stay and reducing readmission of high-risk technology-supported children. "We want to create an all-encompassing program by parents and for parents. Their feedback and constant input is the key to the success of the program and its ongoing evolution and improvement" (see Figure 6).
The SDP has also inspired several physicians to undertake a large-scale research project to examine its efficacy in improving caregiver comfort, knowledge, and knowledge retention when managing a child's new device. Dr. Rodriguez feels that this is only beginning and that the potential for growth and expansion is limitless.
Berry, J.G. (2015). What children with medical complexity, their families and healthcare providers deserve from an ideal healthcare system. (Briefing paper.) Palo Alto, CA: Lucile Packard Foundation for Children's Health. Retrieved from https://www.lpfch.org/publication/what-children-medical-complexity-their-families-and-healthcare-providers-deserve-ideal
Vestal, J. (2015, July 17). Finding a formula for "medically complex" kids. Stateline. [The Pew Charitable Trusts blog.] Retrieved from http://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2015/07/17/fiding-a-formula-for-medically-complex-kids
Courtney Nataraj is Chair, NewYork-Presbyterian Phyllis and David Komansky Children's Hospital Family Advisory Council, New York, NY.
Normaliz Rodriguez, MD, is a Pediatric Emergency Medicine Fellow, Children's Hospital of Minnesota, Minneapolis, MN; and a Visiting Fellow in Pediatrics, NewYork-Presbyterian Weill Cornell Medicine, New York, NY.
Deborah Dokken, MPA, is Co-Editor of Pediatric Nursing's "Family Matters" series.
Elizabeth Ahmann, ScD, RN, PCC, and Deborah Dokken, MPA
Institute for Patient- and Family-Centered Care
The Institute for Patient- and Family-Centered Care (IPFCC), a 501 (c)3 organization founded in 1992, provides essential leadership to advance the understanding and practice of patient- and family-centered care. By promoting collaborative, empowering relationships among patients, families, and health care professionals, IPFCC facilitates patient- and family-centered change in all settings where individuals and families receive care and support. IPFCC recently celebrated its 25th anniversary.
NewYork-Presbyterian Phyllis and David Komansky Children's Hospital/Weill Cornell Medical Center
NewYork-Presbyterian Komansky Children's Hospital, together with Weill Cornell Medicine, is committed to improving the health of infants, children, and adolescents through high-quality and comprehensive programs in patient care, medical education, scientific research, and child and family advocacy. An important focus of its mission is providing outstanding medical care in a family-centered environment in which families, doctors, nurses, and hospital staff partner together.
The Family Matters series focuses on issues, information, and strategies relevant to working with families of pediatric patients. To suggest topics, obtain author guidelines, or to submit queries or manuscripts, contact Co-Editors Elizabeth Ahmann, ScD, RN, PCC; or Deborah Dokken, MPA, Pediatric Nursing; East Holly Avenue/Box 56; Pitman, NJ 08071-0056; (856) 256-2300 or FAX (856) 589-7463.