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Communication vulnerable patients in the pediatric ICU: Enhancing care through augmentative and alternative communication

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Children in pediatric intensive care units (PICUs) may experience a broad range of motor, sensory, cognitive, and linguistic difficulties that make it difficult for them to communicate effectively. Being unable to communicate is emotionally frightening for children and can lead to an increase in sentinel events, medical errors and extended lengths of stay. Implementation of augmentative and alternative communication (AAC) tools and strategies can address the communication needs of children in the PICU by enabling them to communicate their wants, needs and feelings to healthcare providers and family members and participate in their own care more productively. Hospitals around the world are increasingly recognizing and addressing patients' needs for communication access and have begun to implement communication screenings and assessments and interventions at admission and throughout the hospital stay. New standards for all American hospitals, in fact, mandate efforts to improve patient communication. When patient-provider communication improves, treatment success goes up, hospital-caused errors decrease and patient and family satisfaction improve. This article describes three phases of intervention for communication vulnerable children in the PICU and provides examples of treatment approaches that ensure communication access as their medical condition changes.
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Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 3 (2010) 289–301 289
DOI 10.3233/PRM-2010-0140
IOS Press
Communication vulnerable patients in the
pediatric ICU: Enhancing care through
augmentative and alternative communication
John M. Costelloa,, Lance Patakband Jennifer Pritcharda
aDepartment of Otolaryngology and Center for Communication Enhancement, Augmentative Communication
Program, Children’s Hospital Boston, Boston, MA, USA
bDepartment of Anesthesiology, University of Michigan Health Systems, USA
Accepted 3 October 2010
Abstract. Children in pediatric intensive care units (PICUs) may experience a broad range of motor, sensory, cognitive, and
linguistic difficulties that make it difficult for them to communicate effectively. Being unable to communicate is emotionally
frightening for children and can lead to an increase in sentinel events, medical errors and extended lengths of stay. Implementation
of augmentative and alternative communication (AAC) tools and strategies can address the communication needs of children in
the PICU by enabling them to communicate their wants, needs and feelings to healthcare providers and family members and
participate in their own care more productively.
Hospitals around the world are increasingly recognizing and addressing patients’ needs for communication access and have
begun to implement communication screenings and assessments and interventions at admission and throughout the hospital stay.
New standards for all American hospitals, in fact, mandate efforts to improve patient communication. When patient-provider
communication improves, treatment success goes up, hospital-caused errors decrease and patient and family satisfaction improve.
This article describes three phases of intervention for communication vulnerable children in the PICU and provides examples of
treatment approaches that ensure communication access as their medical condition changes.
Keywords:Children, augmentativeand alternative communication, AAC,communication, assistivetechnology, pediatric intensive
care unit, pediatric, hospital, communication vulnerable, sentinel events
1. Introduction
The broad criteria upon which critically ill children
areadmittedtothePediatricIntensiveCare Unit (PICU)
suggest that many of these young patients will experi-
ence communication difficulties at some point during
their stay. According to the American Academy of Pe-
diatrics and the Society of Critical Care Medicine [17],
Corresponding author: John M. Costello, M.A., CCC-SLP,
Department of Otolaryngology and Center for Communication
Enhancement, Augmentative Communication Program, Children’s
Hospital Boston, 300 Longwood Avenue, Boston, MA 02115, USA.
Tel.: +1 781 216 2220; Fax: +1 781 216 2252; E-mail: John.costello
@childrens.harvard.edu.
general guidelines of PICU admission include chil-
dren with: (a) severe or potentially life-threatening pul-
monary or airway disease, (b) severe, life threatening
or unstable cardiovascular conditions, (c) neurological
conditions or disease, seizures, spinal cord compres-
sions, head trauma and progressive neuromuscular dys-
function, (d) hematology/oncology disease and (e) en-
docrine/metabolic disease. Many of these conditions
are associated with ‘communication vulnerability’ be-
cause they involve airway patency and management of
bloodgases,impairedmusclefunction,strengthandco-
ordination and/or neuro-cognitive/neuro-linguistic im-
pairment [7,34].
Wedefinecommunication vulnerability as the dimin-
ished capacity in a patient’s expressive and/or receptive
1874-5393/10/$27.50 2010 – IOS Press and the authors. All rights reserved
290 J.M. Costello et al. / Enhancing care through augmentative and alternative communication
communication abilities. In the PICU such vulnerabil-
ities can relate to the reason for admission (e.g., cranio-
facial surgery, pulmonary disease, Meningococcemia,
etc.) or be secondary to medical interventions, such as
intubation, sedation, compounded medications, physi-
cal restraints, isolation or a tracheotomy, In addition,
some children admitted to the PICU have pre-existing
congenital disabilities, such as visual, hearing, motor,
speech and/or cognitive impairments, that result in a
limited understanding of spoken language and/or diffi-
culty producing intelligible speech. Children with de-
generative diseases, such as muscular dystrophy, juve-
nile Huntington’s disease or panthanokenate neurode-
generative disease, may also have difficulty with com-
munication. Additionally, some children and/or their
families may not understand or speak the language of
the ICU environment, thus compounding the commu-
nication issues [7,34].
In 1998, Dr. David Ebert developed simple criteria
to identify serious communication impairments in hos-
pitalized patients, suggesting causes that include: (a)
inability to produce speech understandable to the med-
ical team, (b) altered mental status, (c) vision so poor
that patients are unable to read, even with corrective
lenses, and/or (d) inability to understand loud speech
even with hearing aids [10]. Children in the PICU
with one or more of these impairments may be unable
to communicate with family and care providers and
thus be more likely to experience a wide variety of ad-
verse outcomes. There is mounting evidence that com-
munication vulnerability places patients at higher risk
for medical recovery and psychological wellness [2,11,
33].
This article discusses the critical need for children
in Pediatric ICUs to communicate effectively with
medical staff and family members and illustrates how
augmentative and alternative communication (AAC)
tools and strategies (communication boards and books,
switches, adapted call buttons, eye gaze, typing, white
boards, etc.) can help these children overcome com-
munication vulnerabilities at various stages of their re-
covery.
2. The ICU experience through the eyes of a child
When making decisions about ways to support com-
munication and the kinds of tools and strategies to rec-
ommend, hospital staff need to consider “how” and
“what” a child understands. Developmentally young
children often experience illness and pain through
‘magical thinking’ – a belief that their illness happens
because it was wished upon them or is punishment for
bad behavior [11,12,25]. Dr. Benjamin Spock pro-
vides an example of the magical thinking in a child who
believed ‘my brother was sick and went to the hospital
because I was mad at him’ [27]. It is crucial that young
children have a way to communicate their fears and
anxieties and to solicit comfort from parents and loved
ones.
Somewhat older children may have learned that ill-
nesses are caused by germs and that staff will respond
based upon how well they express their pain [3]. This
makes it vital for these children to be able to commu-
nicate their needs and feelings about comfort and pain.
Preteens and adolescents typically realize that hospital
staff are trying to help them, even when the procedures
they administer cause discomfort or are painful [23].
These children need to be able to ask questions and in-
teract with staff in ways that facilitate an understanding
of their medical interventions, so that they can partici-
pate actively in their own care.
The PICU is a unique, unfamiliar and frightening
environment, and children often have limited informa-
tion and a high degree of uncertainty about what they
are experiencing (15). In addition, they may have dif-
ficulty processing information because of their condi-
tion, medical interventions and/or medications. Chil-
dren who are communication vulnerable are at high
risk for misunderstanding or misinterpreting their con-
ditions. Also, if they are unable to speak, their attempts
to communicate may be misinterpreted as inappropri-
ate behavior, such as when a child who is intubated tries
to communicate thirst by pointing to her mouth, but
the nurse interprets this as an attempt at self-extubation
and restrains the child’s hand. Rather than manage
these behaviors medically (e.g., by increasing sedation
and/or adding restraints), medical staff today can intro-
duce communication tools, strategies and technologies
that enable communication vulnerable children to ask
questions, connect with familiar and trusted adults, and
express their distress in ways that establish a greater
sense of control.
In 1990, the Association for the Care of Children’s
Health (ACCH) published a clinical practice manual,
Psychosocial Care of Children in Hospitals, which de-
tails what hospital staff can do to reduce stress during
hospital admissions [15]. The manual suggests ways
to provide hospitalized children with information that
supports their sense of control and enables them to par-
ticipate actively in their care in developmentally ap-
propriate ways. This may include providing tools that
J.M. Costello et al. / Enhancing care through augmentative and alternative communication 291
enable them to call for attention, communicate med-
ical and physical needs more explicitly, solicit com-
fort, convey emotional states, ask questions, and ex-
press psychosocial needs, as well as accept or reject
procedures.
3. Sentinel events as a result of poor
communication in the Pediatric ICU
A sentinel event is an unexpected occurrence involv-
ing death or serious physical or psychological injury,
or the risk thereof. A nine-year (1995–2004) study of
sentinel events by the Joint Commission (TJC) named
communication breakdowns as the most frequent cause
of sentinel events [28,29]. Diminished communication
abilities on the part of patients can therefore lead to an
increase in sentinel events [1,2,20,29]. Thus effective
communication must be considered a key cornerstone
of patient safety. Ensuring that all patients have ac-
cess to effective communication in the hospital is part
of a growing effort in many countries to improve the
quality and safety of healthcare [14,18,22,24]. In the
United States, the Joint Commission, which accredits
healthcare organizations and programs [30], has devel-
oped standards of care that require hospitals to identify
and meet the communication needs of patients who are
communication vulnerable. An implementation guide,
Advancing Effective Communication, Cultural Com-
petence, and Patient- and Family-Centered Care: A
Roadmap for Hospitals, is now available to assist hos-
pital administrators and staff to recognize and address
breakdowns in patient-provider communication. The
new standards, which will begin being implemented in
January,2011 [31], requirethathospitalsconductanas-
sessment of patient communication needs at admission
and throughout the hospital stay.
Many hospital staff will need to be engaged in this
process. Admission personnel can flag patients with
pre-existing communication difficulties and identify
children and families where language and cultural is-
sues require consideration. Physicians and nurses of-
ten can identify unmet communication needs as they
assess the alertness and orientation of their patients.
Hospital staff can refer to communication specialists
(e.g., speech-language pathologists, audiologists, in-
terpreters, translators) for a more thorough assessment
and, if necessary, treatment. For example, according to
their Scope of Practice, speech-language pathologists
can offer AAC supports to children with temporary
and/or persistent communication difficulties across the
continuum of healthcare. [Appendix A details compo-
nents of a comprehensive communication assessment
aimed at supporting children who are unable to speak
in the PICU.]
Communication assessment in the PICU is an on-
going, dynamic and collaborative process. Decisions
are often made (and remade) secondary to changes in a
child’s medical status, medications and fatigue, as well
astomotoric, cognitive, behavioral, emotional and sen-
sory factors [6]. Both medical staff and family mem-
bers play an active role in the assessment process and
help carry out treatment protocols. Speech-language
pathologists often collaborate with hospital staff and
the family at the bedside, recommending, implement-
ing and adapting strategies based on input from the
team.
4. AAC supports for pediatric patients in the ICU
As noted, the communication needs of children often
change rapidly in the PICU, and different approaches
are effective during different phases of the process. As
early as 1980, Franklin Silverman discussed the use
of augmentative communication (AAC) in medical set-
tings, describing the role of nurses in helping patients
communicate and identifying vocabulary that patients
may need during nurse-patient interactions [26]. Other
practitioners and researchers have continued to explore
the role of AAC tools and strategies in the ICU, devel-
oping a range of solutions and AAC-related technolo-
gies to help communication vulnerable patients [4,6,
8–10,13,14,18,19,21].
Skilled communication partners are an essential
component of successful treatment in the PICU. Staff
and family members must be cautious and analytical
when asking questions and presenting information, as
well as when interpreting communication initiations
andresponsesoftheyoungpatient. Forexample,‘how’
a communication partner presents information will de-
pend upon the child’s developmental stage, wakeful-
ness, and the child’s ability to process information and
to respond.
Being a good partner also means being a good ob-
server.Thismeansnotover-interpreting non-purposeful
movements, while, at the same time, not disregarding
the possibility that a movement is purposeful and an ef-
fort to communicate. In addition, communication part-
ners need to wait patiently, as it often takes children in
the PICU more time to respond.
292 J.M. Costello et al. / Enhancing care through augmentative and alternative communication
Fig. 1. Microlite switch with toe.
At the Children’s Hospital Boston, several depart-
ments work collaboratively to support communica-
tion vulnerable patients throughout their hospitaliza-
tion. After years of experience, the staff has identi-
fied three phases for providing communication access
in the PICU. Each phase reflects the medical status and
ability of a child to interact in meaningful ways with
medical staff and family members. The framework
also delineates different types of communication sup-
ports, strategies and technologies that are useful at each
phase.
Phase I describes children who are just becoming
aware of their environment, while Phases II and III of-
fer guidelines for children who are more able and inter-
ested in communicating and participating in their care,
as described below. During all phases, communication
partners play a key role by supporting a child’s commu-
nication efforts and helping to identify strategies and
tools that support the child’s ability to communicate
effectively and efficiently.
Phase 1: Emerging from sedation: Getting attention
and responding to yes/no questions
When a child first awakens in the PICU, bedside
providers need most immediately to determine whether
the child is oriented and alert, can use the nurse-call
button and has a way to communicate ‘yes’ and ‘no’.
Getting attention
All patients need a way to call the nurse to solic-
it assistance for medical and physical comfort needs.
While each PICU bed space has a nurse-call button
and nurses are typically close by, children who cannot
Fig. 2. Jelly bean switch with wrist/hand.
physically access a standard nurse call will require a
modified nurse call system. Staff need to (1) identify
the most consistent and reliable physical movement the
child can make, (2) place specialized switches that are
easy to use nearby so that the child can activate the
call system and (3) teach the child to use the switch to
call a nurse. For children with complex physical needs,
an occupational therapist or physical therapist will of-
ten conduct a physical movement and/or physical ac-
cess assessment. Figures 1, 2 and 3 show examples
of switches positioned so they can easily be activated.
Figure 1 depicts a child activating a Micro Light switch
(Ablenet, Inc.) with a toe; Fig. 2 illustrates a child
activating a Jelly Bean switch (Ablenet, Inc.) with the
rotation of her wrist/hand; and Fig. 3 shows an ulti-
mate switch (Enabling Devices, Inc.) that a child can
activate with a slight turn of the head.
Children who are unable to speak in the ICU also
need ways to get their parents’ attention. Staff may
introduce a single message speech generating device
(SGD), as described in the following scenario.
At the age of 7 years 5 months, Melinda was admit-
ted to the PICU secondary to a high fever, sepsis
and possible seizure activity related to an untreated
urinary tract infection. M. has CHARGE syndrome
with a moderate to severe cognitive disability. The
familyreportedthat she uses symbol-based commu-
nication boards at home and in school with vocab-
ulary that is highly motivating, familiar and con-
textually salient. In the PICU, M. was visibly com-
forted when her mother was near, and she would
vocalize to gain her attention. However, due to
poor oxygen saturation levels, M. needed to be in-
tubated and was then unable to vocalize. Whenever
J.M. Costello et al. / Enhancing care through augmentative and alternative communication 293
Fig. 3. Ultimate switch with head.
her mother stepped away from the bedside, M. be-
gan to exhibit significant discomfort, agitation and
overall anxiety, and her oxygen saturation would
drop. Staff provided her with a LITTLEmackTM
speech generating device (Ablenet, Inc.) with the
recording, “Mom, I need you”. M. activated the
device with her left hand. When her mother ap-
peared, she would stop thrashing about and her
oxygen saturation level would return to baseline.
Having a reliable yes/no response
Medical care providers need children to answer sim-
ple “yes” or “no” questions so they can assess their
alertness, basic needs and cognitive, physical and emo-
tional status. A yes/no response, while important, is
not a sufficient communication system for any child,
because it requires either complete agreement or dis-
agreement and limits communication topics to those
introduced by caregivers. At the very least, staff should
offer a third message, ‘I don’t know’ or ‘I am not sure’.
This affords the child an opportunity to ask for clari-
fication and may encourage partners to ask additional
questions.
For children who can’t easily indicate “yes/no/not
sure”, staff can provide other options. These may in-
clude (1) pointing with a finger/hand to text or graphics
depicting “yes/no/not sure” on a communication board,
(2) looking at words or graphics on a board, (3) using
a gesture (thumbs up/eyes up) and/or (4) using part-
ner assisted scanning, (i.e., selecting “yes/no/not sure”
when a communication partner provides options from
which the child selects).
Phase 2: Increased wakefulness: Communicating
basic information with staff and family
As children in the PICU become more aware of their
surroundings, they need ways to solicit attention, re-
spond, ask questions, express concerns and emotions,
make comments, and solicit support, reassurance and
encouragement. This requiresaccess toa broaderrange
of appropriate vocabulary. These children may have
limited physical access to supportive technologies due
to physical disabilities or movement restrictions caused
by traction, surgical incision sites, central line place-
ment, or protection of intravenous (IV), arterial or CVP
lines. AAC options offer a broad range of tools and
access strategies to support communication while ac-
commodating for reduced motor skills.
Picture communication boards
Figure 4 shows two Picture Boards with vocabulary
appropriate for useinthePICU.Staff at Children’sHos-
pital Boston developed these generic displays for use
while custom communication boards are being devel-
oped. Figure 5 shows another board that is now avail-
able commercially [http://www.vidatak.com/]. Once
staff and family members select and learn how to use
the board, they can teach the child to communicate with
it. Symbols always need to be taught to a child. Also,
because some medications used for pain management
cause short-term memory difficulties, children often
need to be regularly re-oriented to their communication
boards.
Alphabet boards
For children with literacy skills, access to the alpha-
bet can enable them to say anything they want. One
study of literate adults in ICUs who had experienced
temporary non-speaking conditions, for example, re-
vealed they preferred alphabet boards to boards with
pre-stored words and phrases [13].
Before organizing an alphabet board, an assessment
will determine if the letters should be arranged in a
QWERTY or ABC configuration. For children who are
unable to point to letters, staff will arrange the alphabet
for partner-assisted scanning. Fig. 6 is an example of
a board ‘chunked’ by vowel group to facilitate efficient
partner-assisted scanning.
294 J.M. Costello et al. / Enhancing care through augmentative and alternative communication
Fig. 4. Hospital boards.
J.M. Costello et al. / Enhancing care through augmentative and alternative communication 295
Fig. 5. Vidatak board.
Alternative methods of access
For children who cannot point directly to a display,
staff will consider alternative access strategies, both
non-electronic and electronic. A scanning approach is
discussed below.
Twelve-year-old Gracie has a diagnosis of spinal
muscular atrophy type II and severe kyphotic spinal
deformity. She was admitted for spinal fusion
surgery. Postoperatively, she was intubated and re-
ceiving pain medication. Her pre-existing physical
disability prevented her from touching buttons on a
speech generating device or pictures on a commu-
nication board. Although she tried to mouth words
around the endotrachealtube, she had minimal suc-
cess. Her medical team asked for speech-language
pathology (SLP)consultation. The SLP discovered
that G was able to slightly shake her head yes/no
and could use a two-sided picture communication
board as shown in Fig. 5. The board featured vo-
cabulary related to her body (pain/comfort), emo-
tions, positioning, personal needs and environmen-
tal concerns. Initially, the SLP oriented her to the
board, while nursing staff observed. When G indi-
cated she wanted to communicate, the SLP pointed
to each section on the board, labeling it (e.g., Is it in
the emotions section? the personal needs section?
the body section?). G nodded ‘yes’ to body section.
The SLP then went through each part of the body on
the ‘body’ template until G nodded ‘yes’ to ‘legs’.
The SLP then asked Itchy? Stings? Hurts? Numb?
Burns? and G nodded ‘yes’ for ‘hurts’. When the
nurse then asked her, “Do you want me to put an-
other pillow under your legs?”, G opened her eyes
widely, smiled and nodded ‘yes’. The nurse put a
pillow under her legs and gently massaged them. G
closed her eyes and staff noted that her heart rate
lowered to an acceptable range.
Speech Generating Devices (SGDs)
During phase II, children often begin to use SGDs
to communicate a broader range of messages. Some
devices offer digital recordings of pre-stored messages
in the child’s own voice. Others allow children to gen-
erate novel messages using synthesized speech. Pre-
stored message in these devices may include medical
issues (e.g., I am in pain, My throat hurts, I feel dizzy),
psychosocial needs (e.g., Please stay with me, Mommy
296 J.M. Costello et al. / Enhancing care through augmentative and alternative communication
read me a story, Turn on the TV, Hold my hand) and
personal comfort (e.g., I need a pillow, I have to go to
the bathroom, turn off the lights). Children who can
spell often prefer keyboard-based systems. For chil-
dren who are pre-literate, staff can use graphic symbols
or pictures to represent their messages.
Voice and message banking [6] can offer some pa-
tients and families the option to record messages in
advance of a hospital admission (e.g., before surgery).
The child and family work collaboratively with an SLP
to set up and record messages digitally into a SGD for
use postoperatively. For example, at Children’s Hospi-
tal Boston, staff use the Message Mate (Words + Inc.)
and GoTalk (Attainment Company) because these de-
vices store up to 40 digitally recorded messages. An-
other option currently under evaluation at Children’s
Hospital Boston is the iTouch or iPad with an attached
speaker and the iTunes storage library. Increasingly,
mainstream technologies are able to support children
with good motor and sensory skills.
WhenchildrenareinthePICU, it is important to min-
imizenewlearningandtakeinto accounttheirchanging
communication needs and abilities as illustrated below.
Abby, age 6 year 8 months, was admitted to the
ICU following the removal of her mandible due
to an invasive Ewing Sarcoma. At a preoperative
appointment with her SLP, she selected an SGD
(Message Mate 40)and digitally banked her own
messages. Staff anticipated she would have facial
swelling for at least 24 hours postoperatively that
could affect her vision so she was taught to use
single switch auditory scanning to access her mes-
sages after surgery. Even when the swelling sub-
sided and she could see, she continued to use single
switch scanning because her arms were weak and
restraints were in place to prohibit her from pulling
at her ventilator tube. Within 48 hours, however,
she began pointing to messages to “talk”.
Staff can also use digitally recorded messages to sup-
port non-English speakers in the PICU. Messages can
be recorded in English and in the child’s native tongue
using a certified hospital interpreter, thus providing
family members and hospital staff with messages both
can understand.
Amplification
Children with pulmonary insufficiency, airway dis-
ease and/or progressive neurological function may
demonstrate minimal strength or respiratory support
for speech volume, making it difficult for others to
hear them. A variety of voice amplifiers are available
commercially for patients whose voice cannot be easily
heard.
Amplification can also be used when a patient has
difficulty hearing. Patients who wear hearing aids may
not be able to wear them when in bed. An audiology
consult can help patients obtain specific technologies,
such as an F.M. amplification system, making it easier
for them to hear.
Phase 3: Need for broad and diverse communication
access: Communicating about and beyond the
hospital environment
Sometimesthecomplexityofachild’smedical needs
requires a PICU level of care even after the child is
awake and alert for extended periods of time. These
children may wish to re-engage with their friends and
renew their interests outside the ICU or hospital set-
ting, as well as communicate with providers and fami-
ly members regarding their medical, personal care and
social needs. Some may even attempt to “catch up”
on academic assignments, play games, participate in
on-line shopping, explore summer camp options, and
so on.
Computers and Speech Generating Devices (SGDs)
Computers and some SGDs offer integrated plat-
forms with sophisticated, memory-based language
strategies, access to large vocabularies, generative
spelling, word and grammar prediction, music and
video files, email, Internet access, environmental con-
trol and even telephone access For many children,
an overall sense of well being is enhanced by ‘re-
engaging’ with the world so it becomes important to
offer these children these kinds of multiple options.
Peter, a 16 year old boy who sustained a C4/C5
fracture while playing high school football, was ad-
mitted to the PICU with paralysis of all four ex-
tremities. He had a tracheotomy and was ventila-
tor dependent. After a complicated medical course,
P’s condition stabilized and he began participating
in a regimen to wean him from the ventilator, which
required continuous monitoring of vital signs. As P.
was awake for longer periods, he became interest-
ed in understanding his own care, socializing with
visitors, planning for rehabilitation upon discharge
from the PICU and connecting with his friends and
teammates through the Internet.
P. had expressed a desire to access multimedia
technologies for personal entertainment. Because
his voluntary movements were restricted to mini-
J.M. Costello et al. / Enhancing care through augmentative and alternative communication 297
Fig. 6. Alphabet board chunked by vowel group for partner assisted
scanning.
mal mouth and head movements, staff introduced
him to the Dynavox EyemaxT M SGD, a computer-
based communication system with Internet access
and email. Figure 7 shows P. calibrating the device
for eye pointing and using the on-screen keyboard
with word prediction.
Assistive and mainstream technologies
Assistive and mainstream technologies offer a multi-
tude of options for young people who experience com-
munication difficulties in the PICU. For example, pa-
tients who are deaf can access the Internet using Inter-
net video relay services or by using two-way typing to
communicate face-to-face with a hearing care provider
on a dual platform system, as shown in Fig. 8. New-
ly released mainstream technologies (such as the iPad)
offer sleek, mainstream platforms with multimedia ac-
cess and applications for communication that allow a
user to type or select symbols [16]. Also, environmen-
tal control options for television, fans or lights are now
being used in some PICUs [19].
As technology options become more sophisticated
and integrate more features on a single platform, PICU
staff must exercise caution to insure that communica-
tion technologies are compatible with the ICU envi-
ronment. In addition to mounting considerations, staff
must ensure that AAC and other technologies do not
interfere with rapid or emergency bedside patient ac-
cess. They also need to consider how these devices
interface with medical technologies. For example, crit-
ical care equipment is vulnerable to EMI (electromag-
netic interference) which has been shown to change the
rate of pumps, ventilators, dialysis machines, defibril-
Fig. 7. Eye tracking: calibration and use in the PICU.
lators and continuous renal replacement therapy ma-
chines. Thus there needs to be a hospital policy, e.g.,
to keep wireless devices one meter from the intensive
care unit bedside [15,28] that establishes guidelines for
the PICU.
5. Palliative care
AAC strategies, technologies and supports not only
can play a critical role in supporting a patient through
the recovery process, they may also offer powerful sup-
ports to children at the end of life. Simple low and no-
tech solutions can help a child gain attention, as well
298 J.M. Costello et al. / Enhancing care through augmentative and alternative communication
Fig. 8. Ubi Duo.
as solicit comfort or communicate messages of com-
fort and hope to loved ones. Indeed, having reliable
communication access during a life threatening illness
may even prove an important part of providing a ‘good
death’ [5,24].
6. Conclusion
This article discusses the paramount importance of
well-informed communication interventions to support
children’s needs and to promote significantly better pa-
tient outcomes in the PICU. Thoughtful collaboration
among healthcare workers, speech-language patholo-
gists, audiologists, interpreters and family members
in both anticipating children’s communication support
needs and then responding to additional needs as they
arise during a hospital stay can make an important dif-
ference in the experience of young patients and can
often lead to better outcomes. The authors suggest
threephasesofcommunicationinterventions,withcon-
crete and practical examples of the kinds of AAC tools,
strategiesandapproachesthatcanprovidehelpfulcom-
munication support during each phase.
Acknowledgements
The preparation of this manuscript was supported in
part by the Rehabilitation Engineering Research Cen-
ter on Communication Enhancement (AAC-RERC)
funded under grant #H133E080011 from the Nation-
al Institute on Disability and Rehabilitation Research
(NIDRR) in the U.S. Department of Education’s Of-
fice of Special Education and Rehabilitative Services
(OSERS).
Conflict of interest
The authors report no conflicts of interest
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Appendix A.
Assessment domain Assessment considerations System selection/Feature matching considerations
Cognition
Alertness/awareness
Orientation
Premorbid status
Nursing staff report
Ability to remain awake
Ability to follow commands
Consider frequency, timing, complexity of assessment, instruction and
strategies introduced
Consider providing a memory book and orientation strategies.
Sensory Pre-morbid vision status
Current vision status
Availability of visual aids
Pre-morbid hearing status
Current hearing status
Ability to use hearing aidsif needed
Consider how to represent language (pictures, symbols, text)
Consider ability to use an SGD
Consider FM system
Consider using partner assisted auditory scanning
Determine availability of hearing aids
Use of patient to partner typing system
Language compre-
hension and literacy
screening
Comprehension Determine approximate level of comprehension, vocabulary needs and
how to represent vocabulary
Consider use of single message system for attention/assistance
Ability to answer yes/no questions Yes/no/maybe system or strategy
Non-English speaking: Native language based communication board (bilingual format)
Picture board
Digital voice recording for language translation of basic messages
Literacy screening Written words
Alphabet for novel messages
Picture based system
Sophisticated speech generating device that supports spelling
Motor access assess-
ment in
different positions
Gestures/pantomime Natural gestures
Gestural codes
Yes/no signals
Control/access
Direct selection including hand/eyes/
other
Signal of yes/no
Standard or adapted nurse call system
Size and layout of word/picture board
Keyboard
Dynamic display
Keyguard
Non-electronic eye gaze strategy
Electronic eye tracking technology
Indirect selection Technology based scanning
Partner assisted scanning
Ability to write/draw Alphabet/word communication board
Pen/paper
White board and marker
Speech production Reduced volume Electrolarynx
Amplification
Moderately compromised intelligibil-
ity Letter cueing/topic cueing
Writing/typing
Word or symbol based communication board
Speech generating device
Voice and message banking
Severely compromised speech pro-
duction Alphabet board
Word/symbol communication board
Speech generating device
J.M. Costello et al. / Enhancing care through augmentative and alternative communication 301
Appendix A, continued
Assessment domain Assessment considerations System selection/Feature matching considerations
Vocabulary selection Patient needs
Patient personality
Patient interests
Address medical, personal and psy-
chosocial needs
Pre-made commercial boards
Custom boards
Spelling with alphabet board
Speech generating device (simple to complex)
Environmental
assessment Lighting
Noise
Mounting
Impacts features of system(s)
Impacts availability of system(s)
Communication
partners Native language
Hearing status
Literacy level
Skill with using augmentative strate-
gies to support communication
May need to consider system to support communication success with non-
literate, deaf or hard of hearing or non-English speaking family members.
May need to provide ongoing support and modeling for partners who are
inexperienced with using augmentative communication tools and strate-
gies.
Documentation/Staff
training Team member responsibilities and
availability
Environment
Diversity of team and limited available time. Require easy-to-learn, main-
tain equipment.
... Unaided AAC involves only the body (e.g., sign language, gestures or body movements, facial expressions), whereas aided AAC refers to the use of external tools, such as communication boards with picture symbols or letters/ words, eye gaze boards, buttons or switches with speech output, or other high-tech speech-generating devices (SGDs) (Beukelman & Light, 2020). Utilizing AAC can contribute to better quality hospital stays for children and adults (Costello et al., 2010(Costello et al., , 2015Hurtig et al., 2020). For instance, AAC can be set up to allow a child to get the attention of hospital staff or their parent so that they can reduce children's discomfort, communicate what will happen during stressful events, provide opportunity for the child to make choices, or help the child engage with materials or activities (Costello et al., 2010). ...
... Utilizing AAC can contribute to better quality hospital stays for children and adults (Costello et al., 2010(Costello et al., , 2015Hurtig et al., 2020). For instance, AAC can be set up to allow a child to get the attention of hospital staff or their parent so that they can reduce children's discomfort, communicate what will happen during stressful events, provide opportunity for the child to make choices, or help the child engage with materials or activities (Costello et al., 2010). Communication access is important, but providing effective AAC supports in the pediatric ICU setting can be challenging. ...
... Attention to the importance of communication access for children and youth in the ICU is growing (Costello, 2000;Costello et al., 2010;Santiago & Costello, 2013), including within the context of ICU liberation (Ely, 2017;Pun et al., 2019;Walz et al., 2020) and changes resulting from the COVID-19 pandemic (Hurtig et al., 2020). Effective nursepatient communication in the pediatric ICU is crucial because stronger communication can reduce stress and frustration and improve outcomes for children and youth, their family members, and nurses themselves (Hemsley et al., 2013(Hemsley et al., , 2014Holm et al., 2020;). ...
Article
Many children who require hospitalization in the pediatric intensive care unit (ICU) are unable to or have difficulty communicating through speech, whether because of preexisting or acute conditions. Children who are unable to be heard and understood using only speech benefit from aided augmentative and alternative communication (AAC), including in hospital settings. This qualitative interview study sought to understand the perspectives of nurses on care and support for children who use or would benefit from aided AAC in the pediatric ICU. Participants were six nurses who worked in pediatric intensive care at a tertiary care unit of a children's hospital in the United States. Three main themes were identified related to nurses' views about supporting children's communication: (a) Caring for the Whole Child, (b) Needing Support from Others and Moving between Roles, and (c) Working with Available Resources and Demands. Nurses emphasized the importance of a holistic approach to care, the impact of others' support and knowledge, and a desire for building greater capacity for promoting children's access to effective communication. Findings offer insight that could improve patient-centered care for children with complex communication needs and support for nurses themselves, particularly within the broader context of ICU liberation.
... Regarding the service setting, among the numerous life situations of individuals with complex communication needs for which communication is essential, hospitalization is one in which access to support for communication is often unavailable. In addition to children with prior disabilities and complex communication needs, children in intensive care may become communication vulnerable because of airway patency, physical weakness, and neurocognitive impairment (Costello et al., 2010). Negative outcomes, including frustration to the patients, adverse medical events (Bartlett et al., 2008), negative patient experience, increased length of stay (David et al., 2013), and poor health outcomes , often result from communication problems between patients and healthcare providers. ...
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Purpose Children with complex communication needs face particular challenges during hospitalization. This study aimed to understand the situation for hospitalized Hong Kong Chinese children with complex communication needs. Methods Six group interviews were conducted with 23 participants, including nurses, doctors, adolescents with acquired brain injury, parents of children with acquired brain injury or cerebral palsy, and community-based therapists. Results Parents and children reported unmet physical and emotional needs due to lack of communication. Healthcare providers felt that direct communication with children was not essential, expecting that parents serve as proxy in conveying needs. The passive interaction mode of Chinese parents, and their increased vigilance in protecting their children, further reduced opportunities for direct child-healthcare provider interaction. Limited patient communication protocols were reported, while tight hospital space discouraged bedside communication activities and tools. Community therapists who knew these children were not involved in pre-admission handover. Conclusion To address the communication barriers, changes in the healthcare, education, and community systems are proposed. Empowerment of the children and parents to promote direct patient-healthcare provider communication, dissemination of simple protocols and bedside communication tools, time allowance for staff to interact with the children, pre-/in-service staff training, and collaboration with community healthcare providers are recommended.
... Pain-related anxiety and pain experiences in children with ASD may be exacerbated due to their inability to express or communicate their pain verbally. 6 Costello et al. 8 proposed the term communicative vulnerability when referring to patients who experience challenges and reduced capability in expressive or receptive communication. These communication challenges could be either temporary such as reduced verbal communication due to medical interventions or permanent, which is due to severe communication disabilities coexisting with disabilities including ASD and cerebral palsy. ...
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Children with autism spectrum disorder (ASD) experience social interaction and communication challenges and often display repetitive, restricted patterns of behavior, activities, and interests. The concept of pain is regarded as one of the most complex human stressors due to its subjective and personal nature and the influences of multiple internal and external factors. Due to the complexity of this disorder, it remains concerning how children with ASD communicate their pain and how observers (i.e., parents, carers, and health care practitioners) respond to these children's pain communication. This scoping review aimed to identify how children with ASD communicate or express their pain. Ten studies met the inclusion criteria for further data extraction. Through reflexive thematic analysis, two main themes were identified: verbal and nonverbal responses used by children with ASD to communicate their pain that could influence pain assessment and management strategies. This review highlighted that children with ASD utilized various verbal and nonverbal methods to communicate their pain experiences and that these methods differed compared to children without disabilities. Furthermore, this review emphasizes the importance of holistic pain assessment strategies as well as additional pictorial support for children with ASD. This review recommends that future research should focus on understanding how the inclusion of different stakeholders in pain assessment for children with ASD, can contribute to holistic pain assessment.
... Les dificultats comunicatives que presenten alguns d'aquests malalts, fa que les infermeres es vegin obligades a millorar les seves habilitats socials i comunicatives per tal d'entendre el pacient de manera integral, contemplant totes les seves dimensions (Carroll, 2007;Karlsson, Bergbom, & Frosberg, 2012;Khalaila, et al., 2011;Patak L. , Gawlinski, Fung, Doering, & Berg, 2004). Una bona comunicació amb el pacient, millora les cures infermeres al malalt crític, pal·liant els símptomes i afavorint el pronòstic del malalt Costello J. M., 2010;Aslakson, et al., 2010). ...
... Les dificultats comunicatives que presenten alguns d'aquests malalts, fa que les infermeres es vegin obligades a millorar les seves habilitats socials i comunicatives per tal d'entendre el pacient de manera integral, contemplant totes les seves dimensions (Carroll, 2007;Karlsson, Bergbom, & Frosberg, 2012;Khalaila, et al., 2011;Patak L. , Gawlinski, Fung, Doering, & Berg, 2004). Una bona comunicació amb el pacient, millora les cures infermeres al malalt crític, pal·liant els símptomes i afavorint el pronòstic del malalt Costello J. M., 2010;Aslakson, et al., 2010). ...
Thesis
Full-text available
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