An estimated 10- 20 million US children have one or more chronic illnesses and Asthma is the most common of these childhood chronic illnesses. Asthma and other chronic illnesses represent a significant burden on the healthcare system, families, and children, especially when poorly managed. There are over 500,000 emergency department (ED) visits related to pediatric Asthma exacerbations each year and is the cause of significant numbers of hospitalizations, many which could be prevented by better home care by parents. Asthma and other chronic childhood illnesses disproportionately impact those of lower socioeconomic and minority status, these are also groups with poorer healthcare literacy. Improvements of all chronic illness related outcomes is highly influenced by caregiver knowledge (health literacy) and feelings of empowerment. This article by Jill S. Sanko, PhD, MS, ARNP, CHSE-A, FSSH, will discuss healthcare simulation as an underused modality to empower an upskill family members who care for children with health needs.
In published literature, improvement of health literacy is highly associated with improved outcomes. Knowledgeable and skilled caregivers can better recognize and intervene with disease exacerbations and are more quickly and effectively able to render appropriate care compared to those without optimal levels of health literacy. Moreover, the ability to recognize signs of deterioration and make decisions related to escalation of care influences morbidity and mortality. Everyday thousands of caregivers doubt their ability to care for their chronically ill children. Currently, there is no consensus on the best way to educate caregivers and families when this comes to care of chronically ill children, but literature strongly supports education as a primary means to reduce ED visits, hospitalizations, and healthcare needs.
One 2022, systematic review demonstrated that groups which participated in an educational program had decreased healthcare needs and related outcomes. Simulation-based healthcare education (SBHE) for parents and caregivers who care for chronically ill children has been shown in the literature to be an effective way to deliver important knowledge and skills, but appears to be underutilized as a tactic to improve caregiver / parental knowledge and raise health literacy. SBHE has been promoted as a safe, supportive and foundational educational approach founded on the principle of patient / family – centered care.
Despite the paltry number of examples of simulation-based caregiver education, there are a few noteworthy examples that help to establish a foundation for this approach. There is also encouragement to find that overall, examples are increasingly more common; most examples readily found in the literature have been published more recently.
Foronda, et. al (2023) explores the use of virtual reality (VR) simulation as part of a pilot study which demonstrated high usability scores. Results support the notion that VR might be a useful tool to impart caregiver/ parental knowledge and skills. A 2017 study demonstrated improvements in the quality of life of caregivers of children with Asthma who participated in a computed-based simulation education program. A recent 2023 integrated review showed that the use of SBHE to educate caregivers contributed to caregiver preparation for the administration of home care.
A 2020 study conducted in Brazil showed that the use of SBHE for caregivers improved procedural skills and the ability to cope with encountered complications. Finally, a 2021 pilot study showed that use of simulation as part of discharge education for caregivers of children with tracheostomies improved self-reported confidence and comfort and improved care skills. These studies demonstrate the utility of the use of SBHE for caregivers and parents, however further coordination is needed to broaden this idea.
Diaz and Arnold (2021) advocate for more collaboration between healthcare providers, educators and simulationists to develop effective educational curricula for parents and caregivers. There are already some good models for this partnership. Children’s hospital of Minnesota uses simulation for education of the parents of children with hypoplastic left heart syndrome – this program has made home life safer for these fragile patients.
Boston Children’s Hospital has an education program for caregivers and parents for at home care. This program is to provide education on different pediatric feed tubes, ventilator management, and central line care and troubleshooting. They also have an pre-operative program that helps to reduce anxiety related to spinal fusion surgery and an innovative virtual reality orientation to various hospital areas that will be visited as part of a stay. These examples, albeit few and far between, serve as proof of concept for the idea to broaden the use of SBHE to teach caregivers and parents of chronically ill children.
Nearly all the examples show positive impact, yet the use of SBHE in this regard is not readily found in the literature or broadly advertised as a service by hospital systems. Simulation based education affords a means to provide hands-on deliberate practice in a safe environment that supports adult learners because this fosters education through hands-on education. The best way for a parent to master clinical skills in relation to administration of IV/ IM / SQ medications, replacement of tracheostomy tubes or to change the battery on a left ventricular assist device is through the use of healthcare simulation.
As a caregiver /parent without the opportunity to practice a clinical skill could have a detrimental outcome for the child. Written discharge instructions are usually insufficient for the development of the skills needed to successfully care for fragile asthmatics or other chronically ill patients. However, discharge letters continue to be the mainstay for how discharge instructions and education is given. The benefit of healthcare simulation for clinical skill development in providers is well documented and therefore the same successful educational method should be used to teach non-providers who care for ill children at home.
In order to reach the goal of a broader use of simulation for the purposes of education for patients, patient’s families and caregivers some intentionality, education, and partnership is needed. This might begin with exploration of the expertise and partnership of local pediatric simulation experts. A great place to start are established pediatric hospital based simulation centers. Next, work with pediatricians to identify parents and caregivers who can most benefit from SBHE.
Pediatricians can be strong advocates and speak to caregivers and parents to explain the benefits of participation in simulation based homecare and discharge education. Invite identified caregivers and parents to attend educational sessions. Diaz and Arnold (2021) note that partnerships work better than prescriptions to gain buy-in and participation of caregivers and parents. Likewise, utilize the expertise of referring physicians to assist with education. In this way, content expertise is leveraged, and parents can have the opportunity to learn from providers caring for children with their child’s condition.
There is a broad opportunity to expand the use of simulation to educate patients, patient’s families, caregivers, and as a means to change health literacy. Currently there is a dearth of research, validated published approaches or recommendations on how healthcare simulation can be leveraged to improve health literacy, homecare skills, or homecare decision making in caregivers, who care for chronically ill children. Moreover, there is little guidance for how to establish a program for this purpose. This will be up to clinical simulationists to change this and bring SBHE from primarily providers to caregivers and homes.
A targeted community outreach program needs to be created. Interest and partnership might begin with highlighting the merits of simulation as an important and effective teaching tactic that reaches adult learners successfully. Testimonials from parents and programs should be collected and used. Gaining support of key stakeholders like The American Academy of Pediatrics, the American Association for People with Disabilities, large pediatric hospital systems and major insurance companies are good places to start for support, but grassroots efforts might win the day.
