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doi: 10.4037/ajcc2012752 2012;21:e21-e32Am J Crit Care Lauren M. Broyles, Judith A. Tate and Mary Beth HappMembers in the Intensive Care UnitUse of Augmentative and Alternative Communication Strategies by Family  

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By Lauren M. Broyles, RN, PhD, Judith A. Tate, RN, PhD, and Mary Beth Happ, RN, PhD

Background Little is known about communication betweenpatients and their family members during critical illness andmechanical ventilation in the intensive care unit, including use ofaugmentative and alternative communication tools and strategies.Objectives To identify (1) which augmentative and alternativecommunication tools families use with nonspeaking intensivecare patients and how they are used, and (2) what familiesand nurses say about communication of family members withnonspeaking intensive care patients.Methods A qualitative secondary analysis was conducted ofexisting data from a clinical trial testing interventions to improvecommunication between nurses and intensive care patients.Narrative study data (field notes, intervention logs, nurses’interviews) from 127 critically ill adults were reviewed for evi-dence of family involvement with augmentative and alternativecommunication tools. Qualitative content analysis was appliedfor thematic description of family members’ and nurses’accounts of patient-family communication.Results Family involvement with augmentative and alternativecommunication tools was evident in 44% of the 93 patients whocompleted the parent study protocol. Spouses or significantothers communicated with patients most often. Main themesdescribing patient-family communication included (1) familiesbeing unprepared and unaware, (2) families’ perceptions ofcommunication effectiveness, (3) nurses deferring to or guidingpatient-family communication, (4) patients’ communicationcharacteristics, and (5) families’ experience with and interestin augmentative and alternative communication tools. Conclusions Assessment by skilled bedside clinicians can revealpatients’ communication potential and facilitate useful aug-mentative and alternative communication tools and strategiesfor patients and their families. (American Journal of CriticalCare. 2012;21(2):e21-e32)

USE OF AUGMENTATIVE

AND ALTERNATIVE

COMMUNICATION STRATEGIES

BY FAMILY MEMBERS IN THE

INTENSIVE CARE UNIT

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©2012 American Association of Critical-Care Nursesdoi: http://dx.doi.org/10.4037/ajcc2012752

Families in Critical Care

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Family members are often described as commu-nication partners and spokespersons for patients inintensive care units (ICUs) who are unable to speakbecause of their need for mechanical ventilation andrespiratory tract intubation.1-6 Yet as the precedinge-mail note so poignantly illustrates, communica-tion impairment and communication difficulty aresources of distress for family members of criticallyill patients.1,2,7

Supportive interpersonal interaction with familymembers can be therapeutic for ICU patients whoare unable to speak8,9 and may ameliorate the stressand trauma experienced by some family members dur-ing and after ICU hospitalization. Yet, ICU patientsand their families often must overcome significantcommunication challenges. We know very littleabout how ICU patients and family members com-municate and whether families are comfortable andproficient with the spectrum of augmentative andalternative communication (AAC) tools and strate-gies. AAC refers to all forms of communication, otherthan oral speech, that are used to express messages.AAC tools include equipment and aids such as writ-ing implements, alphabet or picture communicationboards, or electronic communication devices.10 Inthis article, we present results of a qualitative contentanalysis of data from the parent study, a clinical trial

testing interventions to improve communicationbetween nurses and patients in the ICU.11

Patients’ families commonly express feelings ofloss, dismay, and frustration with the critically illpatient’s loss of voice,7 and prior qualitative researchsuggests that existing modes of communicationbetween ICU patients and their families are insuffi-cient and unsatisfying.1,2,5,12,13 Although nurses rou-tinely advise families to speak to and encourageICU patients,4,14,15 the involvement of families inassisted communication strategies with nonspeakingICU patients has not been systematically investigated.In studies of families’ bedside presence in thetrauma/emergency department and neurologicalICUs,4,14 family members were noted to model thetone and content of their verbalresponses to the patient after thenurse. In our earlier study15 ofweaning from prolonged mechani-cal ventilation in the ICU, 20%(6/30) of the families wereobserved to initiate use of assistivecommunication tools such as writ-ing tablets or “magic slates,”“homemade” communicationboards, electronic e-mail devices,and/or individualized signals ontheir own (M.B.H., J.A.T., V. Swigart,RN, PhD, unpublished data, 2004). Families are tradi-tionally the primary communication partners andfacilitators of AAC for persons with communicationdisabilities in the home setting.16 The use of AACtools in patient-family communication in the ICUhas not been studied, but is critical to the develop-ment of evidence-based interventions to improvecommunication between family members and criti-cally ill patients.

The purpose of this study was to describe familycaregivers’ involvement with assisted communica-tion tools with nonspeaking patients under differentlevels of patient-nurse communication training andintervention in the ICU. Research questions addressedin this study are

My brother died in [an intensive care unit] at age 49 after a prolonged intubation.I know there were many things he tried to communicate through his eyes and the“mouthing of words” but was not successful. He was unable to use his hands andwould often become frustrated at his inability to convey what he was trying tocommunicate. He left 2 teenage children and I often wonder what he would havesaid to them. [e-mail from a bereaved family member]

About the AuthorsLauren M. Broyles is a research health scientist at theCenter for Health Equity Research and Promotion, VAPittsburgh Healthcare System and assistant professor atthe Division of General Internal Medicine at the Univer-sity of Pittsburgh in Pennsylvania. Judith A. Tate is aNational Institute of Mental Health postdoctoralresearch fellow in the Department of Psychiatry at theUniversity of Pittsburgh. Mary Beth Happ is a professorof nursing, critical care medicine, and clinical and trans-lational science and is the UPMC Health System Chair inNursing Science in the Department of Acute & TertiaryCare, School of Nursing, University of Pittsburgh.

Corresponding author: Lauren M. Broyles, RN, PhD, Centerfor Health Equity Research and Promotion; VA PittsburghHealthcare System, 7180 Highland Drive (151C-H), Pitts-burgh, PA 15206 (e-mail: Lauren.Broyles@va.gov).

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Existing modes ofcommunicationbetween inten-sive care patientsand their familiesare insufficientand unsatisfying.

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patient was being enrolled in the study, during obser-vational sessions, and during brief nurse interviewsafter observations. For patients in phase 3, datasources also included the comprehensive evaluationnotes made by the speech-language pathologist dur-ing intervention sessions. The university’s institutionalreview board provided approval for us to conductqualitative secondary analysis of these documents.

Setting and SampleThe parent study was conducted in the 32-bed

medical ICU and 22-bed cardiovascular-thoracicICU at a large, tertiary medical center. Of the 127patients who were enrolled in the parent study overthe 3 different treatment conditions during a 4-yearperiod (2004-2008), 93 patients completed all 4observational sessions and comprised the samplefor identification and quantification of AAC tool use.Narrative study data for all 127 patients enrolled inthe parent study were reviewed for evidence ofobservations or comments about patient-familycommunication and family members’ involvementwith AAC tools. The final analytic sample focusedprimarily on documents from the 41 patients whohad evidence of family involvement with AAC tools(Figure 2), with additional observations or commentsabout patient-family communication extracted fromthe documents of the other patients. Identification ofthese documents is described in the following section.

Procedures Observational data were collected in the parent

study by 1 of 3 trained research assistants using astandardized observation tool established in previ-ous research.18 Observers wrote detailed field notesdocumenting salient events pertaining to the setting,patient, nurse, the presence of family visitors, hos-pital environment or routine, reliability and avail-ability of AAC equipment, and interruptions.11,18

Communication content and interactions were doc-umented to supplement and enhance interpretationof the video recording. Nurse debriefing interviewsused a semistructured guide. After each session, datacollectors began with a grand tour question, “Tellme about your interactions with this patient” fol-lowed by questions and probes about specific AACtools or strategy and the nurse’s opinion abouteffectiveness of the technique. Nurses were askedspecifically about family involvement in AAC com-munication strategies after the last video-recordedsession via the following questions, “Has the familybeen involved in AAC communication strategies? Ifso, how? How did they come to learn about [thestrategy]?” “Did any messages or strategies come from

1. Which AAC tools do families use with non-speaking ICU patients, and how are they used?

2. What do families and nurses say about familymembers’ communication with nonspeaking patientsin the ICU?

MethodsResearch Design

We conducted a qualitative secondary analysisof study records—field notes, intervention logs, andbrief interviews of nurses—from a clinical trial. Theparent study design has been described in detail inprevious publications.11,17 Briefly, the parent studyconsisted of 3 sequential phases detailed in Figure 1.Ten ICU nurses with a minimum of 1 year criticalcare experience and no significant speech or hearingdeficit were randomly selected to participate in eachphase. Eligible patients (1) were 18 years old or older,(2) were nonvocal because of oral endotracheal tubeor tracheostomy, (3) expected to remain intubatedfor 48 hours, (4) were able to understand English,and (5) had scored 13 or above on the Glasgow ComaScale. Individuals who were reported to have a diag-nosed hearing, speech, or language disability thatsignificantly interfered with communication beforehospitalization were excluded. Eligible patients wereenrolled and paired with a study nurse when he orshe was scheduled to work 2 consecutive day shifts.

Data collection primarily involved the observa-tion and video recording of 4 nurse-patient commu-nication sessions for each nurse-patient dyad enrolledin the study. Field notes were generated while the

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Figure 1 Parent study intervention.

Phase 1Control(n=31)

Phase 2(n = 30)

Phase 3(n = 32)

• Usual care• Little to no communication materials available• Nurses did not receive additional training

• 4-hour continuing education class for nurses• Communication cart with “low-tech” supplies for augmentative and alternative communication (eg, communication boards, writing supplies, and hearing aid batteries) supplied to intensive care unit

• 4-hour continuing education class for nurses• 2-hour class on electronic augmentative and alternative communication devices for nurses• Communication cart supplied to intensive care unit• Speech-language pathologist provides assessment and care plan for each study patient• Electronic communication device and low-tech tools matched to patient’s ability and preference

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the family?” Family members were not interviewed;however, observers recorded naturalistic familycomments, particularly those about communicationwith patients, when they occurred.

An AAC tool was defined as a physical objector device used to transmit or receive messages.19,20

We defined family involvement with AAC tools as afamily member’s use of or instruction in use of a low- orhigh-tech communication tool or device during interac-tion with the patient. Of note, we included the fol-lowing “unaided” strategies that, in this sample,involved partner (family) assistance or training:intentional eye-blinking systems and partner messagescanning by using Yes-No questions. We did notinclude head nods, gesture, and mouthing wordsbecause these are considered unaided communicationstrategies.20 Thus, we focused on those strategies thatrequired physical objects, tools, or devices and/orfamily assistance or training.

For each patient in the initial parent studysample, the first author (L.M.B.) reviewed the sourcedocuments in Microsoft Word format to identify andcode the presence or absence of any family involvementwith AAC, and to identify the specific family member(s)involved by relationship, for example, adult child,spouse/significant other, sibling. A minimum of 5

source documents were available for each of the 93patients who completed the parent study protocol;these typically consisted of a study enrollment noteand field notes for each of the 4 observational ses-sions. One-third of the patients (n=31) had evalua-tion/intervention reports by a speech-languagepathologist. AAC tools and devices used by familymembers were then identified and categorized bythe type of AAC tool; multiple uses of the samestrategy within a patient’s case were coded onlyonce. Similarly, for each AAC tool used, instancesin which family members were the providers of theAAC tool were identified. This primary coding wassubsequently reviewed by all 3 authors.

Qualitative content analysis was then appliedto the text for simple description21,22 of what patients’families and nurses say about communicationbetween family members and nonspeaking patientsin the ICU. The source documents containing evidenceof family involvement with AAC or comments aboutfamily-patient communication were imported intoAtlas.ti (version 5.0, Scientific Software Development,Berlin, Germany) for data management and organi-zation. Initial open coding of the documents wasperformed by the first author and involved line-by-line examination of the text to identify the attributes

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Figure 2 Subsample extraction.

Phase 1n=22

Phase 1n=9

Phase 2n=15

Phase 3n=17

Phase 2n=15

Phase 3n=15

Family involvement withaugmentative and alternative

communicationn=41 patients

Did not complete studyn=34

Because of extubation, discharge from unit, or study nurse being reassigned or called off

Patients completing all 4observational sessions

n=93

Patients in parent studyn=127

No family involvement withaugmentative and alternative

communicationn=52 patients

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Table 1. Spouses/significant others (n=22) and adultchildren (n=10) were the family members commu-nicating with patients most often. Other familymembers using AAC included parents (n=7), sib-lings (n=3), others (n = 4: grandchild, aunt, niece,“caretaker”), and an unknown (n=1). Six patientshad more than 1 family member involved.

Writing (pen and paper) was the family-patientAAC strategy used most often (n=26 patients). Tenpatients used electronic speech-generating deviceswith family (Table 2). Eleven patients and theirfamilies used 2 or more strategies. Novel communi-cation tools and assisted strategies devised or pro-vided by families included intentional, idiosyncraticeye-blinking systems (n=3 patients), homemadeflashcards or message boards (n=2 patients), ahome computer (n=1 patient), and a child’s toysuch as a “Magna Doodle,” or an “Etch-A-Sketch”(n=2 patients; Table 2).

Main Themes Describing Use of AAC Tools inPatient-Family Communication in the ICU

Five main themes describing family involvementwith AAC tools were identified across all phases ofthe parent study: (1) families being unprepared andunaware, (2) families’ perceptions of communicationeffectiveness, (3) nurses deferring to or guidingpatient-family communication, (4) patients’ commu-nication characteristics, and (5) families’ experiencewith and interest in AAC tools. Some differences wereidentified across phases. Although the ineffectivenessof AAC tools was a common complaint of familiesthroughout the study phases, positive comments

and characteristics of family use of AAC strategies.23

A code list with definitions was then mutually gen-erated by 2 authors (L.M.B. and M.B.H.) to ensureconceptual clarity and consistent application. Dur-ing the iterative coding process, the dimensions andproperties of codes that repeatedly appeared weremore specifically defined (eg, in terms of frequency,extent, intensity)23-25 and developed into a list offocused codes. Focused codes were eventually col-lapsed to identify themes. Codes and themes werecompared within and across parent study phases toassess thematic strength and potential influences ofthe communication intervention on family AACuse. All documents were dual-coded by two authors(L.M.B. and M.B.H.); areas of coding disagreementwere uncommon, and negotiated consensus wasachieved without arbitration by a third investigator.Interpretive memos were also included in the analy-sis.24,26 Traditional member-checking procedures forestablishing the “trustworthiness” of the data27 werenot feasible in this retrospective analysis. Instead,contextual perspectives for individual cases andreview of the final themes were provided by a co-investigator (J.A.T.) and other research staff whoauthored source documents for the parent study.

ResultsFamily Involvement with AAC

Family involvement with AAC strategies wasnoted in approximately 44% (n=41) of the patientsin the parent study (Figure 2). This subsample ofpatients was 51% male and 90% white; other demo-graphic and clinical characteristics are presented in

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Table 1 Demographic and clinical characteristics of the patient sample

Sex, No. (%)FemaleMale

Race, No. (%)WhiteAfrican American

Age, y, mean (SD)

Intensive care unit, No. (%)Cardiothoracic Medical

APACHE III, mean (SD)

CAM-ICU, delirium positive, No. (%)

8 (47.1)9 (52.9)

17 (100)0 (0)

54.65 (17.5)

8 (47.1)9 (52.9)

53.8 (15.7)

4 (23.5)

7 (46.7)8 (53.3)

14 (93.3)1 (6.7)

58.53 (15.7)

11 (73.3)4 (26.7)

54.4 (10.7)

4 (26.7)

6 (66.7)3 (33.3)

6 (66.7)3 (33.3)

62 (15.9)

6 (66.7)3 (33.3)

51.33 (11.6)

2 (22.2)

21 (51.2)20 (48.8)

37 (90.2)4 (9.8)

57.7 (16.4)

25 (61)16 (39)

53.49 (12.9)

10 (24.4)

Abbreviations: AAC, augmentative and alternative communication; APACHE III, Acute Physiology and Chronic Health Evaluation III28; CAM-ICU, ConfusionAssessment Method for the ICU.29

Characteristics Phase 3 (n=17)Phase 2 (n=15)Phase 1 (n=9)Total patients (N=41)

Parent study

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about the effectiveness of AAC tools were concen-trated primarily in the intervention phases. Notesfrom the interventionist (speech-language patholo-gist) in phase 3 provided a greater emphasis onpatients’ communication characteristics. Not sur-prisingly, evidence of family interest with AAC toolswas stronger in the intervention phases.

Unprepared and Unaware. Families were generallyunprepared for the patients’ inability to communicateeasily and effectively.

The family [members] were unaware of the lackof patient communication prior to surgery. Theyprepared for surgery via a Web site dedicated tolung transplant patients and they said thatalthough they were prepared for many otherthings, they were unaware of the communicationissue. Had they known, they could have betterprepared themselves. [enrollment note]

In other instances, families did not initially recognizepatients’ communication capabilities.

The family did not believe that the patient couldmouth words. [The researcher] demonstrated herability. The patient’s son said, “Well, maybe nowwe can talk to her.”[observation note]

The patient signed his own consent (for studyparticipation) and it seemed as though the familywas surprised that he could write. . . [observa-tion note]

Families’ Perceptions of Communication Effective-ness. Families indicated frustration regarding theirlimited success with naturalistic communicationstrategies such as mouthing words and writing, andthey were aware of patients’ frustration as well.

The patient’s daughter said, “I wish I had a betterway to understand him. Sometimes it’s so frus-trating when he has to repeat over and over. Ican’t read his lips.” [enrollment note]

Although families generally had limited successwith lip-reading and writing, some experiencedmoderate ease with these conventional, intuitivestrategies.

Sometimes [the husband] understood her [thepatient] well and sometimes not. The “sometimesnot” was when she mouthed too quickly to beunderstood. He said that he thought he under-stood her mouthing more often than not. [observation note]

The [patient’s] mom reads his lips but cannotunderstand his writing. [nurse interview]

Families’ reported satisfaction with lip readingoccurred in the context of having additional, suc-cessful alternatives, such as writing, readily available.

The visitors tell me that they are “getting good atlip reading” and can understand the patient fairlywell when she mouths words. If not, the patientwill write. [observation note]

Her husband stated . . . that when he was unableto comprehend the message she mouthed, he wouldoffer her a tablet and pen to write. He was ableto understand those messages for the most part.[enrollment note]

Writing and alphabet boards were not effective strate-gies for many families, primarily because of edemaor limited mobility of the patient’s upper extremity,unavailability of the patient’s glasses, or an existinghandwriting style that tended to be illegible.

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ToolCommunication/letter boardsWriting (paper/pencil)Commercial writing board (wipeable/dry erase)Writing cuffElectronic AAC device Personal computer“Flashcards” or homemade message boardToy

Assisted strategiesEye blinkingTagged yes/no, partner scan

Total

271010120

11

25

512210002

00

22

17000000

20

10

8 (14)26 (46)3 (5)1 (2)10 (16)1 (2)2 (4)2 (4)

3 (5)1 (2)

57

a Percentages may exceed 100% because of rounding. Eleven patients had family member(s) who used more than 1 tool or strategy.

Tool or strategy Phase 3Phase 2Phase 1No. (%)a

Table 2 Augmentative and alternative communication (AAC)tools and assisted strategies used by families

Parent study

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The nurse goes on to inform the son that thepatient is trying to communicate but that she [thenurse] is trying not to have the patient write—justuse yes-no questions because the patient is experi-encing a number of PVCs [premature ventricularcomplexes]. [observation note]

RN: [to family visitor] Do not try to make hertalk. She is weaning [from the ventilator] at thistime and this is the lowest setting she has beenon. She has an issue with getting herself upsetand is being medicated to keep her calm. Sheneeds to relax. She is doing well right now andthis is a good sign. All of us would be anxious ifwe could not talk. I understand. However, youneed to limit your questions to [ones with] yes orno answers. We need to progress to extubation.[observation note]

Nurses recognized that some family members haddifficulty communicating with their loved one inthe ICU and encouraged them to interact and talknormally with the patient. For example, a nurseencouraged sisters who were having difficulty strik-ing up a conversation with a patient to “Pretendthat you two are on a bus and discuss something.”In another instance, a nurse facilitated a telephoneconversation between a patient undergoing mechan-ical ventilation and her brother by reading thepatient’s handwritten messages to the brother.

Prior Patient Communication Characteristics. Fam-ily reports of prior communication and personalitystyles of patients reflected their expectations ofcommunication content and frequency.

Daughter: Well, he’s not much of a communica-tor. . . I just mean he doesn’t talk much. [obser-vation note]

[The patient’s] husband stated . . . that she hadalways been a “talker” and that being unable tocommunicate was frustrating for both of them.[enrollment note]

[The patient’s] sister feels that the ICU staff hasn’t interacted enough with the patient and thishas partially caused the patient’s deterioration inthe hospital. She comments to me that the patientis a “big talker,” and this withdrawn, ambivalentattitude is new to her. [enrollment note]

When asked if he used a hammer to pound a nail[a delirium screening question], the patient said hecouldn’t but his son could. [The patient’s] son saidhe was always “cantankerous.” [enrollment note]

Families also reported that limited literacy and pre-existing visual/auditory impairments affected patients’

The husband said the [communication] boardwas already in the room when they arrived theday before. Unfortunately, he said, the patientwas too weak to pick out the letters. [enrollmentnote]

[The patient’s] family said that he had tried towrite but because he had no glasses and his writ-ing was so illegible, he became frustrated and

did not ask for the paper and pencil. . . [enrollment note]

The patient had been printing notesbut found it difficult to hold a pen.His hands were edematous and stiff. . . [enrollment note]

In some instances, family concernsextended beyond mere frustrationwith communication effectiveness toconcerns about the patients’ safetyand the vulnerability imposed bythe inability to speak.

The family found (the patient) with no call bellin reach. They know that the patient cannotspeak; she needs access. [observation note]

Nurses Deferring to or Guiding Patient-FamilyCommunication. Nurses typically deferred to families’knowledge of and relationship with the patient inplanning communication strategies and, sometimes,in interpreting nonvocal messages from the patient.This deference to and reliance on family interpreta-tion was juxtaposed with an uncertainty about theaccuracy of family interpretation.

Nurse: They (the family) made their own (com-munication) cards. They got photographs for himto look at. They’re not doing yes-no questions,and 3 choices [referring to Written Choice tech-nique]. They have a different relationship withhim. They’re not as open to the [parent study]strategies, because they know him, and don’t

need to use the strategies. . . They’lltry to tell me what he’s saying. It’snot always clear to me that they’reright, but they know him, I’ll taketheir word for it. [nurse interview]

In other instances, however, nursesexpressed concerns about the impactof families’ communication attemptson patients’ clinical progress, par-ticularly with respect to cardiac sta-tus and weaning from mechanical

ventilation. In these situations, nurses took anactive role in directing families’ choice of commu-nication strategies.

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An augmentativeand alternativecommunicationtool is a physicalobject or device

used to transmit orreceive messages.

Patients and fami-lies had minimalfamiliarity with

augmentative andassistive commu-nication strategies.

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baseline ability to read, write, or engage in extensiveverbal interaction.

The husband says [a bit defensively] that thepatient has difficulty with longer words in read-ing, but can read . . . [observation note]

[The patient’s] wife called his hearing impair-ment “selective” prior to admission but admittedshe thought it more profound now. She wonderedif he “needed the wax cleaned out of his ears.”[enrollment note]

Family Experience With and Interest in AAC. Ingeneral, patients and their families had minimalfamiliarity with use of AAC tools and strategies.Prior familiarity with AAC rarely translated into afeasible communication strategy for families andpatients.

[The patient’s grandson] sustained a massivehead injury 10 years ago and now uses an AACdevice. The patient is also familiar with thatdevice and her grandson’s use of eye blinks. Thedaughter states, however, that she is unable todecode her mother’s eye blinks even though sheinstructed her mother that one blink means “yes”and two mean “no.” [enrollment note]

[The patient] was proficient in sign language.He had a large book lying on the side counterabout American Sign Language. When I asked ifhis family members knew sign language also andused it to communicate with him, he shook hishead “no.” [observation note]

Family members did express interest in AAC. Inaddition, several family members and patients gen-erated creative solutions for overcoming communi-cation challenges:

The son shows me a “magna-doodle” [toy] whichhe bought to help his father to communicate,stating “He is so frustrated not being able tocommunicate. . .” [enrollment note]

The husband had provided the erasable writingboard and pen immediately following her lungtransplant. She was able to use it from the timeshe was admitted to the ICU. They also had anEtch-a-Sketch [toy]. [observation note]

The family indicated that [the patient] taught themhow to actively participate by eye scanning andblinks . . . they needed two of them to complete thetask, one to scan and read her blinks and the otherto write the letters down. [enrollment note]

Availability of communication materials at thebedside influenced family members’ use of AACstrategies during phases 2 and 3 of the parent study.

When [the husband] was unable to comprehendthe message she mouthed, he would offer her atablet and pen to write. He was able to under-stand those messages for the most part. He saidthat there had been a [communication] board inthe room at one point and that he used it. Hedidn’t know where it was now sohe relied on either mouthing orwriting. [observation note]

Family interest in and use of AACvaried. Some families reported min-imal use.

I also asked [patient’s family mem-ber] if he had personally used anyof the AAC devices such as the let-ter board, which is in the patient’sroom. He said he had not, but justtended to rely on the patient’smouth. [observation note]

There were several letter boards [study tools], theprocedure boards lying on the monitor. I askedand the wife said she found them in a drawer inthe room. She had used them rarely but foundthem rather effective. [enrollment note]

[Father] states, “That device made it a lot easier;”“[the Dynamite, DynaVox Mayer-Johnson, Pitts-burgh, Pennsylvania] is phenomenal.” [observa-tion note]

Yet most families clearly desired the highest level ofcommunication possible with their critically illpatient. In reviewing AAC strategies with the speech-language pathologist, a patient’s wife commented,“This is all nice and all, but if hecan use a speaking valve, that’swhat we want.”

DiscussionMost research about family

interactions in the ICU is focusedon family information needsand/or communication with healthcare providers.3,6,30-41 This study shiftsthe lens on family communicationin the ICU to focus specifically onfamily-patient communication andthe problems associated with fam-ily-patient communication in the context of criticalillness, the patient’s loss of voice, and other com-munication impairments. The problem of commu-nication difficulty among critically ill patients isreceiving increased attention as a symptom and as acondition of mechanical ventilation during critical

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Family membersand patients generated cre-ative solutions for overcomingcommunicationchallenges.

New care standards requireproviders to identify patientcommunicationneeds and imple-ment a plan toaddress them.

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has evaluated families’ perception of communica-tion difficulty or the effect of interventions toimprove patients’ communication on family care-givers and their communication with critically illrelatives. Clearly, more research is needed to pro-vide evidence-based strategies to aid family care-givers in this setting.

Nurses in this study maintained or assumedthat use of yes-no questions was the least stressfulmethod for family-patient communication duringweaning from prolonged mechanical ventilation.Although this perspective is consistent with previ-ous qualitative research describing clinicians’ per-spectives on family visitation during weaning fromprolonged mechanical ventilation,15 these claimshave not been empirically tested or validated. Thisperspective is also consistent with previous observa-tional studies documenting nurses’ control of thetiming, topic, and duration of communication inthe ICU.17,49-51 Communication with family mem-bers may be more stressful because patients want tocommunicate novel or emotional messages to fam-ily members (such as, “I love you,” “Did you paythe gas bill?” etc) that are not amenable to standardyes-no questions or a “medical needs” topic list.

Family members’ expectations of communica-tion with patients were consistent with past patternsand characteristics of the patient. This finding con-firms the importance of an individualized approachto planning for AAC during critical illness and con-firms individual variation in communication fre-quency and AAC tool preference.52 Additionally, ourstudy results demonstrate that families carry impor-tant information regarding limited literacy and pre-existing visual/auditory impairments that are criticalto effective AAC planning and strategy selection. Thedegree to which data on baseline communicationfunction are routinely collected from families of ICUpatients receiving mechanical ventilation is unclear;however, this is an area of concern in the new hospitalaccreditation standards from the Joint Commission.

AAC communication materials were availableto patients in the 2 intervention phases of the par-ent study. However, without direct instruction andongoing encouragement about how to use commu-nication materials with seriously ill patients whohave impaired communication, families often failedto use AAC tools to understand their critically illloved ones’ messages and instead just “made do.”Families’ limited interest in and use of AAC mayhave been due to having had limited exposure tovarious AAC strategies/devices, their potential forenhancing communication, and how to use themeffectively. Our data indicate that families tended to

illness.42-45 The questions addressed in this study arenovel and have not been considered by otherresearch in the field.

Family involvement with AAC strategies willbecome a more central focus of patient-family cen-tered care and provider-patient communication inthe ICU given the release of new hospital accredita-tion standards by the Joint Commission.46 These

patient-centered communicationstandards require clinical care pro -viders to identify patients’ commu-nication needs and implement aplan to address and accommodateexisting or acquired communicationimpairments. Additionally, thesestandards explicitly recommend theuse of a mixture of low-, medium-,and high-technology AAC devicesand strategies to address the com-

munication needs of patients with sensory or com-munication impairments and recommend ensuringthe availability of these resources 24 hours a day, 7days a week.46 (An overview of the Joint Commissioninitiatives in advancing effective communication,cultural competence, and patient-and family-centeredcare can be found at: http://www.jointcommission.org/Advancing_Effective_Communication/.) The Societyfor Critical Care Medicine (SCCM) also recognizesthat the psychosocial needs of critically ill patients,many of whom cannot communicate, are oftenoverlooked, which compromises the delivery ofpatient-centered care in the ICU.47 SCCM drawsattention to the benefits of family support and par-ticipation in care.47

Families are typically unprepared for the com-munication challenges of critical illness.7 Resourcesthat families used to prepare for surgery did not

describe communication difficultiesthat result from intubation andmechanical ventilation in the post-operative period. Preoperative con-sultation with a speech-languagepathologist can be effective in plan-ning postoperative communicationservices for patients who will be tem-porarily nonspeaking.48 Assessmentby skilled clinicians at the bedsidecan reveal patients’ communication

potential and serve to demonstrate useful assistivecommunication strategies to their families.

Families’ discomfort and lack of proficiencywith communication strategies may add to patients’feelings of stress and frustration, rather than pro-moting improved outcomes. No published study

e29 �AJCC�AMERICAN JOURNAL OF CRITICAL CARE, March 2012, Volume 21, No. 2 www.ajcconline.org

Families rely oncommunicationstrategies that

are more familiarand more readily

available.

Interventions to improve fami-lies’ communica-tion competencymay moderatestress levels.

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rely on communication strategies that were morefamiliar and more readily available. Experience withdeaf family members and/or American Sign Languagedid not translate into useful communication strate-gies during critical illness for patients. Families arelikely to benefit from simple instruction and encour-agement on how to use communication materialsand basic assistive communication strategies in theICU. Nurses and speech-language pathologists shouldmake sure communication materials are availablefor family visitation to maximize all communicationoptions for nonspeaking patients and their families.

Use of an existing data sample has several limi-tations.53-55 As the focus of the parent study involvednurse-patient communication, the data collectionstrategies were not designed with patient-familycommunication in mind; this limitation may affectthe comprehensiveness and validity of the findings,which should be considered primarily as hypothesis-generating. In addition to the 41 families identifiedin our study documents, other families may alsohave used AAC tools but were unobserved by nursesor our research team. That is, our dataset includesonly observations at 5 time points over a 3-day period(enrollment and morning and afternoon observationsduring 2 days of observation) and does not repre-sent the full extent of family involvement in assistedcommunication. We did not observe patient-familycommunication that occurred during evening visit-ing hours. Moreover, because these data were gleanedfrom a clinical trial in which a variety of communi-cation strategies were available and/or presented tononspeaking patients, we may have observed moreAAC use than is currently typical in ICUs.

ConclusionOur study suggests that although families expe-

rience difficulties in communicating with criticallyill, nonspeaking ICU patients, their use of AACtools and assisted strategies is limited, even whenthese resources are relatively available. Given theseobservations and the absence of discussion of thetopic in the literature, it is likely that this problemis unrecognized and may contribute to stress amongboth families and patients. Recent studies show thatfamily members experience psychological symptomssuch as anxiety, traumatic stress, and depressionduring and after a loved one’s critical illness.56-59

Indeed, family members are at risk for posttraumaticstress disorder, particularly if the patient dies.57,60,61

The relationship between patients’ communicationdifficulty and/or ability during critical illness andfamilies’ outcomes after ICU discharge or death hasnot been explored. We hypothesize that interventions

to improve family members’ knowledge and com-petency in the use of simple AAC materials andtechniques might moderate or alleviate stress forfamilies of patients in the ICU.

ACKNOWLEDGMENTSThe authors thank Jill V. Radtke, RN, MSN, and BrookeBaumann, MS, SLP-CCC, for their contributions to data col-lection and management. This material is in part sup-ported with resources and the use of facilities at the VAPittsburgh Healthcare System, Pittsburgh, Pennsylvania.The views expressed in this article are those of theauthors and do not necessarily reflect the position orpolicy of the Department of Veterans Affairs or theUnited States government.

FINANCIAL DISCLOSURESThis study was supported by grants (M. Happ, principalinvestigator) from the National Institute for NursingResearch (5K24- NR010244) and the National Institute forChild Health and Human Development (5R01 HD043988).Dr Broyles is currently supported by a Career Develop-ment Award (CDA 10-014) from the US Department ofVeterans Affairs. This material is the result of work sup-ported with resources and the use of facilities at the VAPittsburgh Healthcare System, Pittsburgh, Pennsylvania.Dr Tate is a National Institute of Mental Health postdoc-toral research fellow in the clinical research training pro-gram in geriatric psychiatry at the University of PittsburghDepartment of Psychiatry (T32 MH19986, principal inves-tigator, Reynolds).

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