Insight into the Significance of Supporting Caregivers from Dr. Payne’s New Book

Joan_Payne Payne_SFC

By Joan C. Payne, PhD

Author of the new Supporting Family Caregivers of Adults With Communication Disorders: A Resource Guide for Speech-Language Pathologists and Audiologists

In the United States, there are nearly 44,443, 800 family caregivers over the age of 18 who are caring for someone aged 50 years and older (Alzheimer’s Association, 2011; National Alliance of Caregivers in collaboration with AARP, 2009). Family, or informal, caregivers are family members and friends who provide unpaid care and advocacy for a chronically ill or disabled person for 20 hours a week or more. As such, family caregivers are the nexus between the formal health care system and the community for many individuals. Family caregivers, also called informal caregivers as opposed to those who are paid to render care, are vital extensions of the health care system. Without them, many persons discharged from acute and rehabilitative hospitals would not be able to care for themselves. The efforts of family caregivers are so important to the health, positive mental outlook, and indeed, survival of care recipients that their services are invaluable and predicted to be needed more and more as the 21st century continues.

This is why I am so excited about my book! Supporting Family Caregivers of Adult with Communication Disorders. A Resource Guide for Speech-Language Pathologists and Audiologists represents the first time that caregiver issues and resources have been organized and put in one place for the benefit of health professionals and the families of their patients. Much of my passion for the topic of caregivers comes from my remembering how stressful caregiving was because I really did not know what to do 20 years ago even though I had advanced degrees in speech-language pathology. The purpose of putting this information in one place where it is readily accessible is to empower speech-language pathologists and audiologists and other health professionals to support family caregivers of adults with disorders of communication and swallowing.

Caregiving is a deeply personal and intensive enterprise. Many caregivers report that they have appreciated the time to forge more intimate and caring relationships with their loved ones. At the same time, a significant body of research indicates that caregiving is also costly in terms of time, effort and financial sacrifice. Many caregivers are placed in the primary role of helping others without adequate resources with which to provide the best care. Caregiving can be so stressful that caregivers can themselves develop diseases and disabling conditions which affect their caregiving and those who depend upon them. For some, the stress can be so crippling that some caregivers are forced to abandon providing care altogether, or they become terminally ill.

To that end, each chapter addresses the issues of caregiving of adults with communication and swallowing disorders. Chapter 2 gives an overview of statistics on family caregivers, caregiver responsibilities for care, the economics of family caregiving, and concepts of caregiver burden, strain and stress. In addition, information on the effects of caregiving on physical, mental and emotional health of those who provide care is also provided. Caregiving has been recognized as an important national resource. There are laws that protect and support caregivers at the local and national levels, and Chapter 2 also includes national and state legislation that supports family caregivers when they deliver care. Chapter 3 describes the diversity of caregivers and how culture and tradition prescribe who will care for disabled adults as well as how caregivers use both internal and external resources. There are important differences in how caregivers perceive and accept caregiving responsibilities across ethnic and cultural groups. These differences have implications for how caregivers manage when the responsibilities becomes stressful. There are also some differences in how caregivers may accept and comply with counseling and referrals. Chapter 4 discusses basic characteristics of various brain-based diseases and disorders that affect communication and swallowing with a focus on how these disabling conditions affect communication and swallowing disorders and to assist caregivers in minimizing communication breakdowns.

Chapter 5 is developed from the perspective of audiologists and includes basic information on hearing loss, auditory processing disorders, balance disorders, cochlear implants and hearing aids, as well as the impact on caregivers. Included in this chapter is information on helping caregivers with hearing aid upkeep. A major portion of the chapter is devoted to assistive and augmentative technologies which audiologists can use to educate caregivers of adults with hearing loss who can benefit from these devices. Perceptions of burden, strain and stress interfere with a caregiver’s ability to provide quality and sustained care.

Chapter 6 describes assessments that measure caregiver strain, burden, stress and coping with caring responsibilities. Chapter 7 introduces concepts of education and counseling caregivers within the clinical setting and within the scope of practice. Educating and training caregivers can be helpful in improving communication and providing a continuum of therapy outside of the clinical setting. Although speech-language pathologists do not provide counseling in many areas of need, resource information is provided that can be shared with caregivers that will empower them to find answers to their most important questions, like respite or hospice care, elder law, and insurance. Chapter 8 provides information on other health care professionals and their areas of expertise. It is designed to inform speech-language pathologists and audiologists about the most appropriate professionals to whom caregivers should be referred when they need counseling in specific areas outside of the scope of practice.

Chapter 9, the final chapter, describes a case of a newly-wed husband who suffers a stroke and how his stroke affects his wife and their relationship. Without support from health professionals, his wife flounders in her caregiving role. Their story ends tragically, but questions are presented to guide clinicians to avoid missing caregiver needs.

It is hoped that this book will serve as a resource for health professionals and students in speech-language pathology and audiology and that it will become part of the toolkit for assisting caregivers. It is also the intent that this resource book will be helpful to those who are involved in caregiving now and in the future.

References

Alzheimer’s Association (2011). Alzheimer’s disease facts and figures. Retrieved from http://www.alz.org/downloads/facts_figures_2011.pdf

National Alliance for Caregiving and AARP (2009). Caregiving in the U.S. Retrieved from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf

About the Author

Joan C. Payne, PhD, is a Fellow of the American Speech-Language-Hearing Association (ASHA) and is a professor of communication disorders at Howard University in Washington, DC, where she has been a member of the faculty for more than 40 years. She is nationally and internationally recognized for her work in neurogenic language disorders from an ethnobiological perspective and is the 2014 recipient of the Scholar-Mentor Award from the National Black Association for Speech-Language and Hearing.

Reflecting on Autism Awareness Month: Why Is Awareness Important?

Zenko, Catherine

By: Catherine B. Zenko, MS, CCC-SLP

During the rush of activities on April 2nd for World Autism Awareness Day, a journalism student interviewed me to discuss upcoming events at our center and to learn more about Autism Awareness Month. One of the first questions she asked me was, “Why is awareness so important for autism?” It seems like such a simple question, but when I had to put into words why I do what I do every day to promote awareness, it took me a moment articulate the importance of awareness. My response sounded something like, “Ideally, the more people know and understand what autism spectrum disorder (ASD) is—how individuals think, process, and learn differently—the more understanding they will be when they see a person on the spectrum acting ‘out of the ordinary.’”

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria, autism spectrum disorder consists of deficits in two domains: (1) social communication and (2) restricted, repetitive, and stereotypic interests and activities (APA, 2013). ASD presents in a myriad of ways, thus inspiring the expression, “once you’ve met one person with autism, you’ve met ONE.” Generally speaking, people with ASD have difficulty communicating: some cannot use speech to communicate; some use a combination of speaking, sign language, pictures, or augmentative/alternative communication (AAC); and some speak too much, not understanding the social rules that a conversation involves two people and both people get to talk. Understanding spoken and written language is also difficult and takes more time to process for most people on the spectrum.

The DSM-5 outlines the diagnostic characteristics of the domain of restricted, repetitive patterns of behavior, interests, or activities as the following: repetitive speech, motor movements, or use of objects; inflexible adherence to routines and/or ritualized patterns of verbal/nonverbal behavior; restricted, fixated interests (intense focus); and hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of environment (APA, 2013). All of the diagnostic criteria translate into people who:
• Are literal interpreters of language and concrete thinkers;
• Have difficulty processing all of the sensory information around them and can have both gross- and fine-motor challenges;
• Are visual learners;
• Have a strong sense of logic that is black and white, not much (if any) room for gray;
• Prefer routines and become extremely upset when a routine is disrupted and are sometimes compelled to finish a task they have started, even when the allotted time has expired;
• Have difficulty taking the perspective of others which makes them appear egocentric;
• Are detail-oriented but have trouble seeing the big picture;
• Have difficulty with attention, starting with joint-attention and engagement with others as well as trouble shifting their attention away from their intense interest area (Janzen & Zenko, 2012; Quill, 1997; Rydell, 2012; Zenko & Hite, 2013).

I like to view autism spectrum disorder more like a difference rather than a disability. The term “neurodiversity” is gaining steam lately and illustrates that just because people on the autism spectrum think and learn differently, they are not disabled. One of Temple Grandin’s most famous quotes embodies this idea of “different, not less.” One social media campaign currently trending is #AutismUniquelyYou. This campaign highlights and celebrates each individual with ASD’s unique personality, instead of lamenting it. Another great campaign is #MakeATinyChange that encourages people to make a difference in the lives of individuals with disabilities through any one of 25 small changes.

There have been several stories circulating this month about how a small gesture of openness and understanding can make a huge difference. One that stood out was a story by ABC News about a man who put away his work and played with a little girl with autism sitting next to him on a plane. The man did not understand why “playing Ninja Turtles with the little girl was a big deal,” but to her mother—who was so relieved when her daughter was met with kindness and acceptance, not pity and annoyance—it meant the world.

Circling back to the question of why awareness is so important, if more people take the time to learn how someone with autism thinks and experiences their surroundings, the more people may embrace the neurodiversity, rather than shy away from the differences and get to know some truly interesting people.

References
American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

Janzen, J. E., & Zenko, C. B. (2012). Understanding the nature of autism: A guidebook to the autism spectrum disorders (3rd ed.). San Antonio, TX: Hammill Institute on Disabilities.

Quill, K. A. (1997). Instructional considerations for young children with autism: The rationale for visually cued instruction. Journal of Autism and Developmental Disorders, 27(6), 697–714.

Rydell, P. J. (2012). Learning Style Profile for children with autism spectrum disorders. Retrieved from http://itunes.apple.com

Zenko, C. B., & Hite, M. P. (2013). Here’s how to provide intervention for children with autism spectrum disorder: A balanced approach. San Diego, CA: Plural Publishing.

About the Author
zenko_hhtpicasdCatherine B. Zenko, MS, CCC-SLP is a Florida-licensed speech-language pathologist who has worked with individuals on the autism spectrum for over fourteen years. She is an adjunct lecturer at the University of Florida Dept. of Speech Language Hearing Sciences since 2008 teaching a graduate-level Autism and Augmentative and Alternative Communication (AAC) course and has worked at the University of Florida (UF) Center for Autism and Related Disabilities (CARD) since 2000. While at CARD, Catherine has helped hundreds of individuals with ASD, their families and educators by providing consultation or training opportunities on a myriad of topics relating to best practices and ASD. In addition to her work at CARD, Catherine has co-authored Here’s How to Provide Intervention for Children with Autism Spectrum Disorder: A Balanced Approach, a timely resource for speech-language pathologists working with children on the autism spectrum as well as graduate students preparing to work with this demographic.

Writing Tips from Plural Authors

Have you ever thought of writing a book in your field? We know that writing a book is no small undertaking, so as part of our 10 year anniversary celebration we enlisted the help of our knowledgeable authors Celeste Roseberry-McKibbin, PhD, Lynn Adams, PhD, CCC-SLP, and Lise Menn, PhD, to share advice on writing a best-selling book! Here you will gain some insight into the inspiration, motivation and hard work that goes into a best-selling Speech-Language Pathology and/or Audiology textbook and professional book.

1. What insight or tips would you offer to a first-time author who is writing a professional development book or textbook in the Speech-Language Pathology and/or Audiology field?

CRM: It is very important to make sure that your contribution is original—something that meets a need in the field. I never write a book that competes exactly with something currently in print. I always make sure that my book is unique, original, and has a perspective that no other book has. The questions I also ask are: who would want to buy my book? Why would they spend money on it? What value does it bring to them? What problems does my book help them solve?
It is so important to think about meeting the needs of your audience. As authors, we have our passions and enthusiasms. Who shares them?

LA: JUST START WRITING…..that is the hardest part!!

LM: Have a colleague in a related but different field read through your book to make sure it’s understandable to someone who doesn’t already know the subject matter.

Go back to the original published sources – amazing amounts of old material are easy to get on-line, and you’ll find that you get fresh insights from reading the classic papers instead of relying on the usual summaries. What you take away from a paper that you read for yourself might be quite different from what everyone else has said about it.

Create or find new examples instead of re-using the standard ones that everyone else uses. You might discover something in the process, too. Continue reading

Interprofessional Education: Future Directions in Pre-professional Instruction

Child and Adolescent Communication DisordersMARIE R. KERINS

By: Marie R. Kerins, EdD, CCC-SLP, Loyola University Maryland
Editor of Child and Adolescent Communication Disorders: Organic and Neurogenic Bases

Interprofessional Education (IPE) is becoming a more recognized model for educating pre-professional students entering the healthcare or education workforce. It is quickly gaining momentum in institutions of higher education as a means of addressing some of the fragmentation observed in the healthcare industry and in the schools, both of which strive to produce positive and lasting outcomes for the individuals and communities they serve. Working collaboratively mends fragmentation, reduces duplicative efforts, and effectively addresses client/student needs. The World Health Organization (WHO) has endorsed IPE and defines it as a period when “two or more professions learn about, from, and with each other to enable effective collaboration and improve [health] outcomes” (WHO, 2010, p. 7). Formalizing IPE through published guidelines from organizations such as the Interprofessional Education Collaborative (IPEC) has helped renew interest in interdisciplinary and collaborative practices that have been around for quite some time but have not been systematically or formally taught in higher education settings. While the WHO and IPEC are geared more toward international health care practices, professionals working in schools have also joined in the conversation and are adopting the language of IPE. One goal of IPE is to develop a practice ready workforce where professionals can immediately implement knowledge and skills they have practiced while training in an integrated and interdisciplinary manner. Evidence is mounting to support interprofessional care (see Reeves, Perrier, Goldman, Freeth, & Zwarestein, 2013; WHO, 2010). IPE and collaborative practice will become an established manner of service delivery to improve patient/student care, if we can embrace interprofessional education as a shared vision with an understanding of the benefits of this new collaborative curriculum.

Collaborative Internship Experience: Speech-Language Pathologists and Reading Specialists

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Handbook of Central Auditory Processing Disorder Reviewed

Handbook of Central Auditory Processing Disorder, Volume 1, 2nd Edition

Peer review of Handbook of Central Auditory Processing Disorder: Auditory Neuroscience and Diagnosis, Volume I, Second Edition edited by Frank Musiek, PhD, CCC-A and Gail Chermak, PhD, CCC-A.

Review by Herbert Jay Gould, PhD, Associate Professor, School Communication Sciences and Disorders, The University of Memphis

The addition of several new chapters to the Handbook of Auditory Processing Disorders Volume 1 is a significant enhancement and expansion of the first edition. The general layout and writing is consistently high quality throughout the book. Several chapters and areas of discussion are particularly valuable to the reader’s basic understanding of CAPD.

The initial section on auditory neuroscience has excellent chapters by Jos Eggermont on central auditory system development and by Phillips on central auditory neuroscience. These two chapters provide a strong basic science underpinning to the remainder of the book. Dr. Eggermont’s chapter ties the anatomic and electrophysiologic activity of the system to the normal behavioral measures of basic signal processing and speech perception of the developing nervous system. The extraordinarily long time course of this system’s maturation exemplifies the difficulties of separating a slowly maturing, but normal system, from a significantly disordered one. Continue reading

Are Your Services Educationally Relevant?

Jean BlosserSchool Programs in Speech-Language Pathology 5th Edition

Jean L. Blosser, EdD, CCC-SLP
President, Creative Strategies for Special Education
Author, School Programs in Speech-Language Pathology: Organization and Service Delivery, Fifth Edition, Plural Publishing, 2012

Educational Relevance—What an Important Concept!
Does a child’s disability impact his or her performance in the classroom? If yes, would services such as speech-language intervention, occupational therapy, or physical therapy make a difference? Should those services be intensive, provided face-to-face or via technology, or integrated into the classroom? The primary question is, if therapy services are offered, will the intervention provided make a difference in the student’s classroom performance, ability to access the curriculum, and/or ability to reach his or her potential?

These are huge questions that administrators, educators, clinicians, and parents ponder every day. When school teams evaluate a student, they seek to determine how the disability may be interfering with the student’s learning. Key educational areas that may be affected are academic, social-emotional, and vocational performance. If everyone agrees there is an adverse effect on educational performance, the student’s eligibility for services is confirmed.

How Do We Guarantee Educational Relevance? Continue reading

Plural Author Blake Wilson Awarded Fritz J. and Dolores H. Russ Prize

Blake WilsonOn January 7, 2015 the National Academy of Engineering announced that the 2015 Fritz J. and Dolores H. Russ Prize would be awarded to Blake S. Wilson, Grame M. Clark, Erwin Hochmair, Ingebord J. Hochmair-Desoyer, and Michael M. Merzench “for engineering cochlear implants that enable the deaf to hear.” The $500,000 biennial award recognizes a bioengineering achievement that significantly improves the human condition.1

“This year’s Russ Prize recipients personify how engineering transforms the health and happiness of people across the globe,” said NAE President C.D. Mote Jr. “The creators of the cochlear implant have improved remarkably the lives of people everywhere who are hearing impaired.”1

Dr. Blake S. Wilson is the Co-Director (with Debara L. Tucci, MD) of the Duke Hearing Center and is an adjunct professor in each of two departments at Duke, Surgery and Electrical Engineering. He also is the chief strategy advisor for MED-EL Medical Electronics GmbH of Innsbruck, Austria, and a Senior Fellow Emeritus of the Research Triangle Institute (RTI) in the Research Triangle Park, NC, USA. He has been involved in the development of the cochlear implant (CI) for the past three decades, and is the inventor of many of the signal processing strategies used with the present-day devices.

Dr. Wilson and the teams he has directed have been recognized with a high number of awards and honors, most notably the 1996 Discover Award for Technological Innovation; the American Otological Society’s President’s Citation in 1997 for Major contributions to the restoration of hearing in profoundly deaf persons (to the RTI team); the 2007 Distinguished Alumnus Award from the Pratt School of Engineering at Duke; the Neel Distinguished Research Lectureship at the 2008 Annual Meeting of the American Academy of Otolaryngology, Head & Neck Surgery; and recently the Lasker-De-Bakey Clinical Medicine Research Award in 2013.

Better Hearing with Cochlear ImplantsDr. Wilson co-authored Plural Publishing book Better Hearing with Cochlear Implants which provides a comprehensive account of a decades-long research effort to improve cochlear implants (CIs). The research was conducted primarily at the Research Triangle Institute (RTI) in North Carolina, USA, and the results provided key pillars in the foundation for the present-day devices.

 

1. National Academy of Engineering. Inventors of Cochlear Implant Win 2015 Fritz J. and Dolores H. Russ Prize [Press Release]. Retrieved from http://www.nae.edu/Projects/MediaRoom/20095/107830/129146.aspx

A Tribute To Marion Downs

As many of you know, Dr. Marion Downs passed away recently. Here we post a nice tribute written by Dr. Jerry Northern that he shared with us.

Dr. Marion Downs Passes Away at Age 100 World-renowned Audiologist and Pioneer for Infant Hearing Screening

Dr. Marion Downs Passes Away at Age 100
World-renowned Audiologist and Pioneer for Infant Hearing Screening

Dr. Marion P. Downs, an innovator in the field of pediatric audiology and a tireless advocate for the early identification of hearing loss, passed away on November 13th, 2014. During her extraordinary career at the University of Colorado Health Sciences Center, Dr. Downs developed and evaluated techniques for testing hearing in babies and young children and for fitting them with hearing aids. Dr. Downs created the first universal infant hearing-screening program in 1963 in Denver, CO. She relentlessly pursued making the identification and management of hearing loss in infants and children an important medical, educational, and public health issue. Her professional publications and lectures brought worldwide attention to the importance of early intervention for hearing loss. Today, in the United States, more than 96% of all infants born in the US receive a newborn hearing screening thanks largely to her efforts. Numerous international countries have followed her lead in establishing universal infant hearing screening programs. Continue reading

Augmentative and Alternative Communication: From Novice to Expert Clinician

By John McCarthy, PhD, CCC-SLP and Aimee Dietz, PhD, CCC-SLP

Augmentative and Alternative Communication

Augmentative and Alternative Communication by John McCarthy and Aimee Dietz

Understanding the personal story of an individual who uses augmentative and alternative communication (AAC) can have a positive impact on the attitudes of people without disabilities toward that individual (McCarthy, Donofrio-Horwitz, & Smucker, 2010). Almost any AAC specialist has story after story of moments when they have helped reveal the true abilities of an individual through AAC:

• The eight-year-old boy with cerebral palsy who everyone assumed had below average intellectual ability and presymbolic language skills, was in fact bilingual.
• The forty-year-old woman with bulbar onset amyotrophic lateral sclerosis who cannot dress or feed herself, but still manages her finances, parents her children, and makes end-of-life decisions.
• The eighteen-year-old girl with autism spectrum disorder whose potential to contribute to society was doubted, yet planned for employment after high school and managed a new mobile device-based communication system.
• The fifty-two-year-old man with stroke-induced aphasia who medical staff assumed was “incompetent”; however, still made informed decisions about medical care and enjoyed friendly banter on the golf course with his adult sons.  Continue reading

Ten Advances in Cochlear Implant Technology and Services

By: Jace Wolfe, PhD

Over the past several years, there have been numerous advances in cochlear implant technology and services. As recent as a decade ago, there were little to no technological solutions available to assist a cochlear implant candidate/recipient, who presented with severe to profound hearing loss, with speech recognition in difficult listening situations—understanding speech in noisy and reverberant settings, over the telephone or television, and when spoken from a distance. Today, cochlear implant manufacturers offer a wide variety of solutions to meet the needs of patients with hearing aids or cochlear implant processors who struggle to communicate. This article identifies ten ways in which cochlear implant technology and services have evolved and improved in the past few years.

10. Automatic scene classification: Hearing aids have featured acoustic scene classifiers for almost a decade. Through these systems, hearing aids classify an environment as one that possesses background noise, speech in quiet or in noise, music, wind, and so forth. Once the listening situation is classified into one of these environments, the hearing aid selects the appropriate form of signal processing that will theoretically optimize performance in the given environment. This technology can be quite valuable as many users are unlikely to manually switch to programs designed for specific, challenging situations. Furthermore, this system will likely be well-received by cochlear implant users as it makes its way to implant sound processors.

9. The development of new speech recognition materials that provide a more realistic assessment of how hearing aid and implant users perform in real-life listening situations: Cochlear implant technology has improved so much that many users score near 100% correct on sentence recognition tests in a quiet environment with a single talker who is male and speaks at a slow to moderate rate. Additionally, many hearing aid users who struggle substantially in realistic situations also often score too well on these tests to meet the indications for cochlear implant candidacy. This fact makes it difficult to distinguish between excellent implant and hearing aid users and good users who may benefit from additional services.

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