Resources to Support Children with Complex Communication Needs in Medical Settings

Jessica Gormley

12/29/2017 1:26 AM

As mentioned in post #1 (https://communicationmatrix.org/Community/Posts/Content/11853)  a growing body of research suggests that use of augmentative and alternative communication (AAC) strategies can improve the experiences of children with complex communication needs (CCN) in medical settings (Costello, Santiago, & Blackstone, 2015). An inpatient hospital stay can be an overwhelming and frightening experience for many children with CCN and their families (Costello et al., 2015, p. 190). It is vital that clinicians serving these children are well equipped to serve each child’s unique communication needs. Providers across the continuum of care, from outpatient, educationally-based, and inpatient services, can all play a role to support children with CCN and their families during an inpatient stay. Children with CCN can benefit from health care providers, especially in those in inpatient settings, who understand how children experience illness, pain, and hospitalization in various developmental stages (Costello et al. 2015). These children also benefit from access to communication supports that aid in both comprehension and expression within the medical setting; however, AAC providers in educational and outpatient settings can also help prepare the child, family, and inpatient provider to optimally communicate in medical settings. 

According to Gaynard and colleagues (1990), two vital ways that health care providers can reduce child stress in hospital settings include supporting the child’s (a) sense of control and (b) developmentally-appropriate and active participation in daily care. 

As Costello and colleagues (2010) proposed, offering high- or low-tech AAC supports to children with CCN within the hospital setting may be one way increase the child’s sense of control and active participation in the inpatient setting by providing a means to solicit attention and/or comfort, express medical and physical needs, communicate emotional states and pain, ask questions, and accept or decline medical procedures.

In a recent online focus group of speech-language pathologists (SLPs) who provide inpatient rehabilitation services to individuals with CCN, one common theme that emerged was the lack of training and resources available to professionals to support communication in inpatient settings (Gormley & Light, 2017). As a first step, I have compiled a list of free resources made available by researchers and expert clinicians in the area of AAC and medical settings. These resources can be used by clinicians across the continuum of care to (a) help children with CCN who may already use AAC strategies to prepare for an inpatient stay, (b) support children with CCN to effectively communicate during an inpatient stay and medical encounters, and (c) prepare children with a new onset communication disability and their families for discharge from an inpatient medical setting. Many of these resources are made freely available on the website http://www.patientprovidercommunication.org/ so feel free to consult this website for any updates on patient-provider communication.

Clinical Resources:
“Communication Passport Accident and Emergency” (http://www.patientprovidercommunication.org/files/A-E_Communication_Passport.pdf) Families of children with CCN and AAC providers may want to collaborate to complete this communication passport. In this document, information about a child with CCN can be recorded in preparation for an upcoming or unanticipated hospital stay. Information included in this passport are categorized into the following topics: “things you must know about me,” “things that are important to me,” and “my likes and dislikes.”

“Effective Communication in Children’s Hospitals: A Handbook of Resources for Parents, Patients, and Practitioners” (http://www.patientprovidercommunication.org/pdf/25.pdf) This 48-page handbook is a compilation of articles, PowerPoint presentations, webcasts, written materials, and apps to support effective communication among children with CCN, their families, and medical providers.

“Useful Communication Supports for Medical Encounters” (http://www.patientprovidercommunication.org/files/Useful%20Communication%20Supports%20for%20Medical%20Encounters.pdf) This review describes low-cost communication resources such as communication boards, health passports, hospital discharge checklists, and emergency information forms that can be used with children in CCN in the medical setting.  

“Hospital Discharge Checklist” (http://www.patientprovidercommunication.org/files/HOSPIT-3%20(1).pdf) This document presents a detailed list of questions that can be used by families of children with CCN and medical providers alike to prepare for a discharge from a medical facility. Important topics addressed include coordination of services from the hospital to the school setting, referrals for programs and services outside of the hospital, and equipment recommendations.

Webcasts and PowerPoint Presentations: 

“AAC Considerations in Advance of a Child’s Upcoming Hospital Admission: Preparing Early to Enhance Care” (http://www.patientprovidercommunication.org/files/Santiago_%20Rachel%20-%20AAC%20Considerations%20in%20Advance%20of%20a%20Childs%20Upcoming%20Hospital%20Admission.pdf) This PowerPoint presentation created by Boston Children’s Hospital Inpatient AAC SLP, Rachel Santiago, explains the communication vulnerability of children with CCN in the pediatric intensive care unit setting and three profiles of patients who may benefit from AAC supports prior to surgical interventions. She outlines the importance of (a) preparing the child with CCN to use communication enhancement strategies in a low stress setting (e.g., home, school, outpatient), (b) coordinating care among family members, inpatient SLPs, and outpatient SLPs, (c) AAC assessment considerations, (d) environmental considerations, (e) AAC tools, and (f) vocabulary selection topic considerations. 

“Augmentative Communication in the Pediatric ICU/Acute Care” (http://www.patientprovidercommunication.org/files/costello%20ISAAC%202016%20panel.pdf) This PowerPoint was created by Boston Children’s Hospital Augmentative Communication Program Director, John Costello, and explains (a) bedside communication strategies for pediatric providers, (b) bedside communication tools for the inpatient setting, and c) phases of communication needs in the hospital.

“Providing Communication Access for Patients: The Role of AAC Across Healthcare Settings” (http://www.patientprovidercommunication.org/files/219%20PDF%20Beukelman%20PATIENT%20PROVIDER%20COMMUN%20.pdf) In this PowerPoint presentation, Dr. David Beukelman, reviews materials and tools discussed in the book “Patient-Provider Communication: Roles for Speech-Language Pathologists and Other Health Care Professionals” (you can learn more about the book here - http://pluralpublishing.com/publication_ppc.htm ). Topics explored include: (a) strategies to prepare individuals with CCN for medical encounters, (b) communication strategies for health care personnel, (c) options to use hospital orders to alert staff to patient communication needs, and (d) AAC supports and tools across a variety of inpatient medical settings. 

“Putting Patient Provider Communication at the Forefront: Overcoming Barriers Through Phases of Pediatric Inpatient Program Development” (http://www.patientprovidercommunication.org/files/ISAAC%202016%20-%20Putting%20PPC%20at%20the%20Forefront%20-%20Public%20Slides.pdf) This PowerPoint presentation was created by Inpatient SLPs from Boston Children’s Hospital (John Costello and Rachel Santiago), NYU Langone Medical Center (Tami Altschuler), and St. Louis Children’s Hospital (Claire Frandin, Jane K. Quarles). These expert AAC clinicians review communication vulnerability of children with CCN in inpatient settings and outline their experiences establishing, maintaining, and/or sustaining an inpatient AAC program.

"Patient Provider Communication" (http://aac-rerc.psu.edu/index.php/webcasts/show/id/27) In this 15-minute webcast, John Costello an SLP and Director of the Augmentative Communication Program of Children’s Hospital Boston discusses strategies to support patient-provider communication within the Pediatric Intensive Care Unit. A case example is also presented within this webcast.


Book:
Although not free, I highly recommend the following book “Patient-Provider Communication: Roles for Speech-Language Pathologists and Other Health Care Professionals” edited by Dr. Sarah Blackstone, Dr. David Beukelman, and Dr. Kathryn Yorkston. This is the quintessential resource to learn about the most up-to-date patient-provider communication research in the field of AAC. Topics covered in this book range from supporting individuals with CCN in acute care hospitals to inpatient rehabilitation facilities to long term care facilities. To learn more about this resource, feel free to click the following link http://pluralpublishing.com/publication_ppc.htm

References:
Costello, J.M., Patak, L., & Pritchard, J. (2010). Communication vulnerable patients in the pediatric ICU: Enhancing care through augmentative and alternative communication. Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach, 3, 289-301.

Costello, J.M., Santiago, R.M., & Blackstone, S.W. (2015). Pediatric acute and intensive care in hospitals. In S.W. Blackstone, D.R. Beukelman, & K.M. Yorkston (Eds.), Patient provider communication: Roles of speech-language pathologists and other health care providers (pp. 187–224). San Diego, CA: Plural Publishing Inc.

Gaynard, J., Wolfer, J., Goldberger, R., Thompson, L., Redburn, L., & Laidley, L. (1990). Psychosocial care of children in hospitals: A clinical practice manual from the ACCH child life research project. The Association for Care of Children’s Health. Maryland.

Gormley, J. , & Light, J. (2017, November). Complex communication needs in inpatient rehabilitation: Perspectives from online focus groups of SLPs. Poster presented at the Annual Conference of the American Speech-Language Hearing Association, Los Angeles, CA.

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