Presentation
Solutions for Facilitating Communication with Children and Adult Patients with Special Health Care Needs
DescriptionChildren and young adults with special health care needs (CYSHCN) are a heterogenous population of patients at increased risk for chronic physical, developmental, behavioral, or emotional conditions. They also require medical services beyond that required by children generally, which often continues into adulthood. Often, when patients and caregivers access care, they face numerous barriers due to the complexity of their health care needs and inflexibility of the health care system that isn’t built around the unique needs of this population. These barriers include bidirectional gaps in communication that heavily impact the experience of the patient, caregiver, and healthcare team, which impacts the level of care the patient receives. Technology offers promise for improving the communication between the patient and the health care system by removing access barriers. Social stories are a proven means of communicating
complex situations in a deconstructed and descriptive way that can deepen understanding and improve tolerance of these situations. We aim to: employ a human-centered design approach to develop an application that will allow social stories to be built specifically for patients and families encountering the healthcare system; make these adaptable and specific to different healthcare environments so they may be utilized broadly by patients, caregivers, and their health care team; improve care and remove communication barriers, thus improving the healthcare delivery.
When CYSHCN seeks medical care, the experience is often challenging for both the patient, the
caregivers, and each member of the health care team. The health care system and the components that the patients are required to access are usually not built with their specific needs in mind. When a patient requires care, the health care team and their services may be unfamiliar and unequipped to deal with and adapt to the patient and the caregivers’ needs. The resulting gaps in communication that result from the system not adapting to the needs of the patient and caregivers, as well as health care providers not being familiar with their specific needs often make patients and caregivers reticent to pursue follow-up care, making the care lower quality, and results in increased morbidity and increased caregiver distress. It also results in diminished provider satisfaction with the care provided and increases provider distress in caring for the patient and caregiver. This results in prolonged hospital stays or clinic visits that are unproductive, with increasing reluctance on the part of the patient and caregivers to access the care they require. Medical providers also feel unequipped to assist patients and families due to a lack of familiarity and training, and technology support for communication. This is the communication gap we are seeking to assist in closing. CYSHCN may have their own accompanying communication device, such as a tablet with an augmented and alternative communication (AAC) app. These types of applications provide pictorial communication solutions that are designed for all-purpose needs. However, they lack the specificity for the most effective communication within healthcare situations, and they may not be usable by clinical staff. Historically, these types of existing tools have shown to be inadequate for most of the healthcare scenarios that CYSHCN and caregivers experience. Additionally, few patients possess these devices, and cannot be taught to utilize such a device in the short time of an inpatient or outpatient encounter. A mobile application for the targeted patient population, which caters to the communication needs of healthcare could close this gap. Despite numerous social story applications and products that can be purchased online by families to build social stories, these are not always accessible to patients and caregivers in an impoverished urban or rural environment who may not be able to access high cost or subscription based materials. The current effort aims to satisfy the burgeoning need to tailor an application to be specific to the health care environment, health care system, and the needs of CYSHCN and their caregivers. Further, through this approach, we will target healthcare workers who will be encountering the patient at different care areas in the health care system. There is currently no technology present within the healthcare environments where the patients access their care, further limiting patients and families who cannot access this type of technology at baseline. Our project seeks to close these communication gaps by creating social stories specific to each area of the health care system that a patient will encounter and maintaining that technology embedded within the workflow of the health care system. We are seeking to create a technology that has the flexibility to allow the patient and caregiver to address their needs
specifically within the system, as each patient has variations in their level of complexity and how to best address the communication and care gaps. We also seek to leverage the technology to allow health care providers in the inpatient and outpatient setting to adapt the communication to include care planning for each specific care area. Examples include utilizing the technology to plan for and allow healthcare workers to adapt typical work flows as needed in the inpatient or outpatient setting to allow for a successful encounter, such as through creation of a bidirectional communication plan with the patient and caregivers, adaptation in how vitals are obtained or how the healthcare staff will interact with the patient and caregivers, and planning for the use of assistive means for common procedures such as x-rays or blood draws.
complex situations in a deconstructed and descriptive way that can deepen understanding and improve tolerance of these situations. We aim to: employ a human-centered design approach to develop an application that will allow social stories to be built specifically for patients and families encountering the healthcare system; make these adaptable and specific to different healthcare environments so they may be utilized broadly by patients, caregivers, and their health care team; improve care and remove communication barriers, thus improving the healthcare delivery.
When CYSHCN seeks medical care, the experience is often challenging for both the patient, the
caregivers, and each member of the health care team. The health care system and the components that the patients are required to access are usually not built with their specific needs in mind. When a patient requires care, the health care team and their services may be unfamiliar and unequipped to deal with and adapt to the patient and the caregivers’ needs. The resulting gaps in communication that result from the system not adapting to the needs of the patient and caregivers, as well as health care providers not being familiar with their specific needs often make patients and caregivers reticent to pursue follow-up care, making the care lower quality, and results in increased morbidity and increased caregiver distress. It also results in diminished provider satisfaction with the care provided and increases provider distress in caring for the patient and caregiver. This results in prolonged hospital stays or clinic visits that are unproductive, with increasing reluctance on the part of the patient and caregivers to access the care they require. Medical providers also feel unequipped to assist patients and families due to a lack of familiarity and training, and technology support for communication. This is the communication gap we are seeking to assist in closing. CYSHCN may have their own accompanying communication device, such as a tablet with an augmented and alternative communication (AAC) app. These types of applications provide pictorial communication solutions that are designed for all-purpose needs. However, they lack the specificity for the most effective communication within healthcare situations, and they may not be usable by clinical staff. Historically, these types of existing tools have shown to be inadequate for most of the healthcare scenarios that CYSHCN and caregivers experience. Additionally, few patients possess these devices, and cannot be taught to utilize such a device in the short time of an inpatient or outpatient encounter. A mobile application for the targeted patient population, which caters to the communication needs of healthcare could close this gap. Despite numerous social story applications and products that can be purchased online by families to build social stories, these are not always accessible to patients and caregivers in an impoverished urban or rural environment who may not be able to access high cost or subscription based materials. The current effort aims to satisfy the burgeoning need to tailor an application to be specific to the health care environment, health care system, and the needs of CYSHCN and their caregivers. Further, through this approach, we will target healthcare workers who will be encountering the patient at different care areas in the health care system. There is currently no technology present within the healthcare environments where the patients access their care, further limiting patients and families who cannot access this type of technology at baseline. Our project seeks to close these communication gaps by creating social stories specific to each area of the health care system that a patient will encounter and maintaining that technology embedded within the workflow of the health care system. We are seeking to create a technology that has the flexibility to allow the patient and caregiver to address their needs
specifically within the system, as each patient has variations in their level of complexity and how to best address the communication and care gaps. We also seek to leverage the technology to allow health care providers in the inpatient and outpatient setting to adapt the communication to include care planning for each specific care area. Examples include utilizing the technology to plan for and allow healthcare workers to adapt typical work flows as needed in the inpatient or outpatient setting to allow for a successful encounter, such as through creation of a bidirectional communication plan with the patient and caregivers, adaptation in how vitals are obtained or how the healthcare staff will interact with the patient and caregivers, and planning for the use of assistive means for common procedures such as x-rays or blood draws.
Event Type
Oral Presentations
TimeTuesday, March 263:30pm - 3:50pm CDT
LocationSalon A-4
Simulation and Education