Jana Childes M.S., CCC-SLP
Speech-Language Pathologist, Instructor
OHSU Northwest Clinic for Voice and Swallowing
2
3
1. Persons who regain functional speech after head and neck
cancer surgery aren’t interested in using computer
technology for communication.
2. Speech generating devices are really expensive and are only
useful to people who have no other way to communicate.
3. Only AAC specialists really know how to incorporate AAC
goals into a communication treatment plan.
4
5


Participants: 10 adult patients who were non-speaking
following head and neck cancer surgery
Procedure: Patients were provided a speech generating
device (SGD) until they were able to vocalize or were
discharged


DynaMyte 3100 or MessageMate
Methods: Observation, interviews, questionnaires, and
clinical record review
6
www.words-plus.com
MessageMate
www.depts.washington.edu
DynaMyte 3100
7

Observations of communication methods, content, SGD
use, and communication quality

Writing and nonverbal methods were most common

More than one method of communication was used during
94% of communicative interactions
8



Patients initiated 63% of
communicative interactions
involving the SGD
Most SGD constructed
messages were completed
independently
Preference for SGD
Benefits of SGD use




Poor device position or
malfunction
Staff time constraints
Limited staff familiarity with
SGDs
Preference for writing
Barriers to SGD use
9


Participants: 21 postoperative head and neck cancer patients
Procedure: Patients received an SGD on POD#1, which
remained with them until they were able to speak or were
discharged
◦ Springboard SGD

Methods: Data collection regarding device
use, functionality, and technology related issues was
completed on POD 1-4.
10
www.prentrom.com
11

Summary of findings:
◦ Patients demonstrated improved abilities to use the SGD over the first
4 post-operative days
◦ Participants demonstrated satisfaction with the SGD during their
hospitalization
◦ Messages were understood by the unit clerks over the call system
◦ Difficulty with device position and access in the ICU
◦ Patients requested that the device include more than one
communication modality (i.e., method for novel message creation)
12


Single case study illustrating the AAC intervention for a patient
who had undergone total laryngectomy and total glossectomy
Described the grief response related to loss of verbal
communication and the challenges of AAC intervention in
relation to the grieving process
13
www.images.com
14

Augmentative and Alternative Communication (AAC):
Augmentative and alternative communication (AAC) includes
all forms of communication (other than oral speech) that are
used to express thoughts, needs, wants, and ideas. People
with severe speech or language problems rely on AAC to
supplement existing speech or replace speech that is not
functional.
◦ http://www.asha.org/public/speech/disorders/AAC/
15

Speech Generating Device (SGD): Any electronic
communication system that provides speech output of the
user’s message. Voice output may be digitized or synthesized.
◦ Dedicated SGD: Systems designed specifically for communication
(e.g., Dynavox Maestro, Lightwriter)
◦ Integrated SGD: Multifunctional with specialized software that allows
them to act as a speech generating device (e.g., laptop computer with
speech generating software).
16

I will discuss several products based on my clinical and
research experience. I am not an employee of, nor do I have
any financial relationship with any of the companies or
products discussed today.
17
18
1.
2.
3.
4.
Getting Ready Phase
Immediate Post-Surgical Phase
Speech Restorative Phase
Long-term AAC

Pre-operative counseling about the upcoming changes to
communication, breathing, and swallowing is critical!

Prepare for a period of speechlessness

Communication rehabilitation is an ongoing process that will
evolve over time
20

Communication Needs Assessment
◦
◦
◦
◦
◦
Native language
Literacy
Vision and Hearing
Handwriting
Computer skills








Gain attention
Request tangible objects
Communicate pain
Request care (e.g., assistance to bathroom)
Ask questions
Participate in care planning
Express novel information
Social Interaction



Pilot study to explore the communication needs of
nonspeaking hospitalized head and neck cancer patients
Participants: 11 patients and 8 RNs
Methods: Survey of each patient’s perspective of:
◦ Overall communication difficulty
◦ Difficult topics to communicate
◦ Individuals with whom the patients had difficulty communicating
23

Patient report of communication strategies used during
hospitalization:
◦ Writing and mouthing words most common
◦ 36% reported using more than one communication method
◦ 82% of patients reported experiencing an inability to communicate
at some point in the hospitalization
24

Communication Needs:
◦ Most important: information about pain, breathing problems and need
for suction, and bathroom
◦ Communication about psychosocial needs was next most important
 Fear, loneliness, grief, request to contact family member
◦ Social Communication
25

Effective Communication is Critical
◦ Time of significant anxiety and loss of control

Effective Communication Facilitates:
◦ Participation in self-care and decision making
◦ Interaction with support systems
◦ Adaptation and community reintroduction



Investigation of anxiety, coping strategies, and coping
behaviors of 75 patients undergoing head and neck cancer
surgery
Anxiety score on the day prior to surgery was comparable to
that of persons admitted to a psychiatric facility for acute
anxiety reaction
Self-care preceded reduction in anxiety during the
postoperative hospitalization

“No longer considered to be simply a patient’s right, effective
communication is now accepted as an essential component of
quality of care and patient safety.”

Only when messages are negotiated until the information is
correctly understood by both parties can communication be
considered effective

Critical throughout the care continuum – from admission
through discharge
www.jointcommission.org
28
Beyond pen, paper, and
communication boards

Communication Options
◦ Handwriting, gestures, and facial expression
◦ Low-technology communication aides
◦ Text to speech systems

Educate patients and communication partners regarding
strategies to facilitate communication
Talking Photo
Album - Ablenet
Go Talk 9
Attainment Company
Go Talk Button
Attainment Company
iPad2 -Apple




Multiple text to speech applications for the iPod
touch, iPhone, iPad, and Android platforms
Price ranges from free to very expensive
Advantages: Portable, good quality voice, can create new
messages and retrieve stored messages
Disadvantages: Small screen, limited volume (may be
improved somewhat with external speaker), requires precise
fine motor movements




Most patients will use multiple communication methods
Not the time to introduce new technology – use familiar
devices
Help patients and family members manage their expectations
Identify communication methods that can transfer easily from
the hospital to a rehabilitation facility or home
33
Focus on developing functional verbal communication
 Ongoing evaluation of communicative effectiveness

Where are the gaps? Could an AAC
method fill in the gap?

Consider the following communication needs:
◦ Home: size, location, roles/responsibilities
◦ Telephone use
◦ Employment (type of work, environment, etc)
◦ Social Activities: clubs, organizations, volunteer
work, religious activities, family gatherings
◦ Community: transportation, shopping, medical
appointments
◦ Travel


When verbal communication is not possible or no longer
functional
May consider a dedicated or integrated communication
system
1.
2.
3.
Bridge the gap between surgery and functional speech.
Facilitate optimal communication rehabilitation.
Maintain functional communication in the event of a change
in medical status, additional surgery or radiation, etc.
38

Support group for individual laryngectomee survivors of larynx
and other throat cancers
Founded in 1996 with the goal to provide support and
information about life after laryngectomy surgery from
persons who have experienced it.

www.webwhispers.org

39

Total Laryngectomy: A surgical procedure for treatment of
laryngeal/pharyngeal cancer wherein the entire laryngeal
mechanism, from the hyoid bone to the upper rings of the
trachea, are ablated. Requires separation of the respiratory
and upper aerodigestive tract, and creation of a permanent
tracheostoma for respiration.
40
Electrolarynx
Voice Prosthesis
Images courtesy of InHealth Technologies
41


Phase 1: Identify the communication methods and
information related to the communicative effectiveness of
persons who have undergone a total laryngectomy
Phase 2: Learn about the experiences of persons who have
undergone a total laryngectomy and use a speech generating
device (SGD) as either a primary or secondary communication
method
42
251 Participants
Gender:
Age:
Years Post-Op:
189 males
39 years – 95 years
0-57 years
60 females
Mean: 66 years
Mean 7.75 years
Employment:
Employed: 48 persons
Unemployed: 200
persons
43
250
207
200
150
100
65
62
50
13
10
Tongue Surgery
Other oral
surgery
0
Radiation
Chemotherapy
Reconstruction
44
45
160
135
140
120
100
74
80
60
40
20
18
11
0
Esophageal
Speech
Electrolarynx
Voice
Prosthesis
Writing
3
7
SGD
Other
Communication Method
46
120
104
100
83
80
60
40
20
0
45
93
42
21
31
20
6
Method
47
48



The Communication Effectiveness Survey
Measures functional changes in communication
Rating of perceived communicative effectiveness in 8 different
communication situations
◦ 1 = not at all effective
◦ 4 = very effective
49
Conversing at a distance
Conversing in the car
Conversing when upset or angry
Conversing in a noisy environment
1
Conversing with stranger- telephone
2
Conversing with familiar person - telephone
3
Conversing with strangers - quiet place
4
Conversing at home
1= Not effective at all, 4 = Very effective
50
51



Participants: 26 persons who indicated that they use a speech
generating device on the general Web Whispers survey
Invited to complete a 13-item questionnaire related to their
experience using a SGD.
Goal: To gather qualitative data in regard to each individual’s
experience using a SGD, whether as a primary or secondary
method of communication
52
Time Frame
8%
15%
Immediately after surgery
23%
Within 6 months after surgery
15%
39%
6+ months after surgery
Difficulty with alaryngeal
speech
Change in speaking demands
53
Frequency
Percentage
Several times each day
58%
A few times each week
14%
Rarely
21%
Other
7%
54
Training
13%
6%
25%
Product Salesperson
Speech-Language Pathologist
Owner's manual
I did not receive training
44%
12%
Other
55





82 year-old female
Communication methods: SGD and handwriting
SGD: Dynavox
Pros: very portable, voice quality and pronunciation are
good, volume is adjustable
Cons: aesthetics (“it is a device and looks like a
device”), limited voice inflection, takes a while to become
active, difficulty with touch screen
56





70 year-old male
Communication methods: Electrolarynx, SGD
SGD: Desktop computer with Etriloquist text to speech
software
Pros: Messages are easy to retrieve, volume is okay, easy to
use on the telephone
Cons: Stationary, programming is time consuming due to
difficulty with typing and spelling
57





Female
Communication Methods: Electrolarynx, TTY and relay service
for telephone calls
SGD: TTY
Pros: Allows me to make important phone calls, relay
operators are courteous and friendly
Cons: Occasionally the person who answers will hang up
because they don’t understand the relay process
58





62 year-old male
Communication Methods: SGD, handwriting
SGD: Talking typewriter
Pros: Voice quality is adequate, portable, good battery
life, more efficient than handwriting
Cons: Too big to fit in your pocket, intonation is
awkward, programming is time consuming
59





59 year-old male
Communication Methods: Alaryngeal voice, SGD
SGD: iPad with Locabulary
Pros: very portable, good battery life, easy to
program, volume, free
Cons: none
60



Many alaryngeal speakers experience communication
situations where they feel that their verbal communication is
ineffective
Persons who have undergone a total laryngectomy are using
computer technology for communication
Speech generating technology can be a useful tool to “fill in
the gaps.”
61
62

Functional communication for AAC users depends on
knowledge and skill in four interrelated areas
◦
◦
◦
◦
Linguistic Competence
Operational Competence
Social Competence
Strategic Competence
63

Mastery of both the native language and the linguistic “code”
of the AAC system.
◦ Capturing the mental dictionary
◦ Message creation and organization
◦ Personalizing messages
64




Patient: Mrs. J is a 60-year-old female
Communication Impairment: Dysarthria secondary to a
partial glossectomy, flap reconstruction, and previous
radiation.
Communication Methods: Speech, SGD
SGD: She recently received an iPad2 with Proloquo2go from
her granddaughter. She has added a few personalized
messages and organized them alphabetically.
65
www.proloquo2go.com
66
1.
2.
3.
4.
Discuss situations where she has had difficulty being
understood
Formulate lists of messages used in these situations
Determine how best to label each message
Page organization
67




Refers to the technical skill required to operate the system
Evaluate the skill level of each patient
Technical skills include: on/off, launching speech generating
program/app, adjusting volume, pressing “speak,” clearing
messages, etc.
Navigation between stored and novel messages, as well as
between message pages
68
Patient: Mr. H. is a 71 year-old male
Communication Impairment: Anarthria and aphonia secondary
to total laryngectomy and total glossectomy
Communication Methods: Handwriting, SGD
SGD: Dynavox Maestro
69
www.dynavoxtech.com
70
 Began
with the basics
 Novel message creation with word prediction
 Navigation between free typing and phrases
 Program message pages and buttons
 Review often and provide opportunity for practice
71

Refers to the social rules of communication
◦ Initiating, maintaining, and terminating interactions
◦ Turn taking
◦ Expression of wants/needs, social closeness, and information transfer
72



Patient: Mrs. E is a 68 year-old female
Communication Impairment: Aphonia secondary to
permanent tracheostomy dependence
SGD: Lightwriter SL40
73
www.toby-churchill.com
74


Began with observation of use in conversation
Education regarding components of conversation
◦ Practice initiating, maintaining, and terminating conversation



Homework
Reviewed practice conversations
Practice facilitated increased comfort and confidence
75



Refers to the compensatory strategies required to
communicate effectively in various communicative situations
Transition between speech and SGD
Clarification strategies
76




Patient: Mr. M. is a 73-year-old male
Communication Impairment: Aphonia secondary to total
laryngectomy.
Communication Methods: Electrolarynx, SGD
SGD: iPod Touch with Speak It
77
www.future-apps.net
78




Programmed specific vocabulary related to ordering auto
parts
Revisited the “3 strikes” rule
Began to wear his EL around his neck for easier transition
between EL and iPod
Pt. to show screen to his communication partner if
background noise prevented them from hearing the speech
output
79




Private pay vs. Medicare or insurance funding
On funding applications, emphasize the medical and safety
implications of being unable to communicate verbally
Encourage patients and families to discuss communication
technology options prior to purchase
For patients with limited funding options, look into programs
through the American Cancer Society, Easter Seals, or your
state’s public utility or telecommunications programs
80



“The patient's current communication approaches do not
permit him to convey the type and complexity of information
required to independently complete his activities of daily
living.”
“He needs a method that would allow him to quickly
communicate information about his medical status in the
event of an emergency.”
“He is currently unable to contact emergency services if an
emergency occurred while he was by himself (either at home
or in the community).”
81


“She needs a communication method that would allow her to
quickly and efficiently describe medical symptoms and
changes in medical status. Inability to do so could result in
delay of medical care provision.”
“His current communication method, handwriting, limits him
to face to face communication with only literate, English
speaking communication partners.”
82



Many alaryngeal speakers will experience communicative
contexts where they feel their speech is ineffective.
Persons who have had a total laryngectomy are using
technology for communication.
AAC is a critical component of communication rehabilitation
for head and neck cancer patients.
83
Thank you to my colleagues:
Andrew Palmer
Dr. Donna Graville
Dr. Melanie Fried-Oken
And especially to the members of Web Whispers for
their support of this project
84
85

Speak It (Future Apps, Inc.)
◦ www.future-apps.net, $1.99

Locabulary (Red Mountain Labs, Inc)
◦ www.locabulary.com, free

Proloquo2go (Assistive Ware BV)
◦ www.proloquo2go.com, $189.99

Assistive Chat (Chee Ng)
◦ www.assistiveapps.com, $24.99
86

Speak It To Me (Industry Dynamics)
◦ free

iSpeech (iSpeech, inc.)
◦ free

Text to Speech Plus (Zakia Mahzabin)
◦ www.appshomestore.com, $0.99

Verbally – iPad only
◦ www.verballyapp.com, free

Etriloquist – text to speech for PC
◦ www.etriloquist.com
87

MessageMate

DynaMyte 3100, Dynavox Maestro

Springboard

Lightwriter SL40

iPod, iPad2, iPhone

Go Talk Button, Go Talk 9

Talking Photo Album
◦ www.word-plus.com
◦ www.dynavoxtech.com
◦ www.prentrom.com
◦ www.toby-churchill.com
◦ www.apple.com
◦ www.attainmentcompany.com
◦ www.ablenetinc.com
88




Beukelman, D.R., Garrett, K.L., & Yorkston, K.M. (2007). Augmentative
Communication Strategies for Adults with Acute or Chronic Medical
Conditions. Baltimore, Maryland: Paul H. Brookes Publishing Company.
Donovan, N.J., Kendall, D.L., Young, M.E., & Rosenbeck, J.C. (2008). The
communicative effectiveness survey: preliminary evidence of construct
validity. American Journal of Speech-Language Pathology, 17, 335-347
Dropkin M. J. (2001) Anxiety, coping strategies, and coping behaviors in
patients undergoing head and neck cancer surgery. Cancer
Nursing, 24(2), 143-148.
Fox, L.E. & Rau, M.T. (2001). Augmentative and alternative
communication for adults following glossectomy and laryngectomy
surgery. Augmentative and Alternative Communication, 17, 161-166.
89





Happ, M.B., Roesch, T.K., & Happ, S.H. (2005). Patient communication
following head and neck cancer surgery: a pilot study using electronic
speech-generating devices. Oncology Nursing Forum, 32(6), 1179-1187.
Light, J. (1989). Toward a definition of communicative competence for
individuals using augmentative and alternative communication systems.
Augmentative and Alternative Communication, 5(2), 137-144.
Rodriguez, C. & Blischak, D.M. (2010). Communication needs of
nonspeaking hospitalized postoperative patients with head and neck
cancer. Applied Nursing Research, 23, 110-115.
Rodriguez, C. & Rowe, M. (2010). Use of a speech-generating device for
hospitalized postoperative patients with head and neck cancer
experiencing speechlessness. Oncology Nursing Forum, 37(2), 199-205.
The Joint Commission: Advancing Effective Communication, Cultural
Competence, and Patient- and Family-Centered Care: A Roadmap for
Hospitals. Oakbrook Terrace, IL: The Joint Commission, 2010.
90