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Occupationandcommunicationprogramsforpost-comapersons withorwithoutconsciousnessdisorderswhoshowextensive motorimpairmentandlackofspeech

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  • Giulio E. Lancioni a,*, Nirbhay N. Singh b, Mark F. OReilly c, Jeff Sigafoos d,Francesca Buonocunto e, Fiora DAmico e, Jorge Navarro e, Crocissa Lanzilotti e,Marisa Megna a

    aUniversity of Bari, ItalybMedical College of Georgia, Georgia Regents University, Augusta, USAcUniversity of Texas at Austin, USAdVictoria University of Wellington, New Zealande S. Raffaele Rehabilitation Center, Ceglie Messapica, Italy

    cted by extensivetext and regulate

    Research in Developmental Disabilities xxx (2014) xxxxxx

    A R T I C L E I N F O

    Article history:

    Received 15 January 2014

    Accepted 28 January 2014

    Available online xxx

    Keywords:

    Technology-based programs

    Minimally conscious state

    A B S T R A C T

    These two studies were aimed at extending the assessment of technology-aided programs

    for post-coma persons with extensive motor impairment and lack of speech. Specically,

    Study I assessed a new program arrangement, in which stimulation access and caregiver

    attention could be obtained with variations of the same response (i.e., single- versus

    double-hand closure) by three participants who were diagnosed at the upper level of the

    minimally conscious state at the start of the study. Study II was aimed at enabling two

    persons who had emerged from aminimally conscious state to engage in leisure activities,

    listen to audio-recordings of family members, and send and receive messages. The

    nd eyelid closure,

    icipants of Study I

    regiver interaction.

    ptions the program

    unication options).

    ges for intervention

    All rights reserved.

    G Model

    RIDD-2197; No. of Pages 9

    Contents lists available at ScienceDirect

    Research in Developmental Disabilitiestheir stimulation input (Bruno, Vanhaudenhuyse, Thibaut, Moonen, & Laureys, 2011; De Jong, 2013; Eifert, Maurer-Karattup,1. Introduction

    Post-coma persons in a minimally conscious state or emerging/emerged from such a state, and affemotor impairment and lack of speech, are unable to manage any (satisfactory) interaction with their con

    Emergence from minimally conscious state

    Communication

    Stimulation

    Leisure

    responses selected for these participants were hand pressure a

    respectively. The results of both studies were positive. The part

    increased their responding to increase their stimulation input and ca

    The participants of Study II managed to successfully select all the o

    included (i.e., the leisure options, as well as the family and comm

    General implications of the programs and the related technology packa

    with post-coma persons with multiple disabilities are discussed.

    2014 Elsevier Ltd.Occupation and communication programs for post-comapersons with or without consciousness disorders who showextensive motor impairment and lack of speech& Schorl, 2013; Elliott & Walker, 2005; Giacino, 1996; Katz, Polyak, Coughlan, Nichols, & Roche, 2009; Lancioni et al., 2010;

    * Corresponding author at: Department of Neuroscience and Sense Organs, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy.

    Tel.: +39 0805521410.

    E-mail addresses: [email protected], [email protected] (G.E. Lancioni).

    Please cite this article in press as: Lancioni, G. E., et al. Occupation and communication programs for post-coma personswith or without consciousness disorders who show extensive motor impairment and lack of speech. Research inDevelopmental Disabilities (2014), http://dx.doi.org/10.1016/j.ridd.2014.01.029

    http://dx.doi.org/10.1016/j.ridd.2014.01.029

    0891-4222/ 2014 Elsevier Ltd. All rights reserved.

  • G.E. Lancioni et al. / Research in Developmental Disabilities xxx (2014) xxxxxx2

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    RIDD-2197; No. of Pages 9Whyte, 2007). Adopting intervention strategies to avoid their likely isolation and impoverishment is a basic priority of anyrehabilitation and care center, and of any family context responsible for them (Conneeley, 2012; Hirschberg & Giacino, 2011;McNamee, Howe, Nakase-Richardson, & Peterson, 2012; Muller-Patz, Pokorny, Klobassa, & Horki, 2013; Naude & Hughes,2005; Noe et al., 2012; Seel et al., 2013).

    Technology-aided intervention programs (i.e., procedures based on the use of assistive technology to monitor respondingand follow itwith relevant stimulation and social or communication events/options) have been suggested as an advantageousapproach to help these persons (Baxter, Enderby, Evans, & Judge, 2012; De Joode, Van Boxtel, Verhey, & Van Heugten, 2012;Lancioni et al., 2010; Lancioni, Singh, OReilly, Sigafoos, De Pace, et al., 2011; Naude & Hughes, 2005; Scherer, 2012;Wallace &Bradshaw, 2011). Indeed, those programs (a) focus on the use of technology to enable the person to develop an active role andself-determinationwithchoiceopportunities, and (b) thusdepart fromtraditional stimulationapproaches that treat thepersonas a largelypassive recipientof therapy (Daveson, 2010;Di Stefano, Cortesi,Masotti, Simoncini, &Piperno, 2012;Georgiopouloset al., 2010; Hirschberg & Giacino, 2011; Lotze, Schertel, Birbaumer, & Kotchoubey, 2011; Magee, 2005, 2007).

    Research with persons at the upper level of the minimally conscious state or emerging/emerged from such a state, butaffected by extensive motor impairment and lack of speech, has emphasized the potential of technology-aided programs forthe persons independent pursuit of (a) general stimulation and caregiver attention, (b) communication, or (c) combinationsof multiple options (Lancioni, OReilly, et al., 2013; Lancioni, OReilly, Singh, Buonocunto, et al., 2011; Lancioni, OReilly,Singh, Sigafoos, et al., 2011; Lancioni, Singh, OReilly, Sigafoos, Buonocunto, et al., 2011). For example, Lancioni et al. (2009)used a program that included a microswitch for accessing preferred stimulation and a sensor connected to a speech-generating device (SGD) for calling the caregiver with two adults at the upper level of the minimally conscious state.Different responses were required to activate the two devices (i.e., microswitch and SGD-related sensor). Both participantslearned to use the devices successfully and thus managed independent stimulation access as well as requests for caregiverattention. Lancioni, Singh, OReilly, Sigafoos, Buonocunto, et al. (2011) developed a technology-aided messaging program,which allowed two persons emerged from aminimally conscious state to choose the partner withwhom to communicate, toselect the message to send him or her from among a variety of messages available, and to have any incoming message readout to them. Lancioni, Singh, et al. (2013) assessed a program that expanded the aforementioned ones, and allowed twoadults who had recovered consciousness but were limited by their motor and speech disabilities to engage in leisure andcommunication. In practice, the participants were enabled to activate songs and videos, to make requests, and to engage inmessaging activities and phone calls on their own.

    The two studies reported here were aimed at extending the assessment of technology-aided programs for post-comapersons with extensive motor impairment and lack of speech. Study I assessed a new program arrangement, in whichstimulation access and caregiver attention were obtained with variations of the same response by three participants at theupper level of the minimally conscious state (i.e., at the start of the study) (Bruno et al., 2011). In practice, a single hand-closure response allowed them to access preferred stimuli while a double hand-closure response allowed them to add arequest for caregiver attention. The technology for monitoring the responses was a combination of pressure and opticdevices. Study II was aimed at enabling two persons who had clearly emerged from aminimally conscious state to engage inleisure activities, listen to audio-recordings of family members, and send and receive messages through a technologypackage that they could operate via hand or eyelid responses.

    2. Study I

    2.1. Method

    2.1.1. Participants

    The three participants (Adam,Walter, and Billy) were 51, 74, and 79 years old, respectively. Adam had suffered a ruptureof aneurysm of the left middle cerebral artery with subsequent extended left fronto-temporal hematoma with midline shiftand coma about 3months prior to the beginning of this study. His coma lasted about 2weeks and developed into a vegetativestate followed by a minimally conscious state, which was still present before the start of this study, as documented by theComa Recovery Scale-Revised (CRS-R) (Kalmar & Giacino, 2005). His CRS-R total score was 15, with partial scores of 1 on thecommunication and oromotor/verbal subscales, 2 on the arousal subscale, 3 on the auditory and visual subscales, and 5 onthe motor subscale.

    Walter had been involved in a road accident resulting in severe traumatic brain injury with left fronto-temporal subduralhematoma and diffuse axonal injury on the left temporal, corpus callosum and mesencephalic lesions about 3 months priorto this study. His coma lasted less than 2 weeks and then developed into a vegetative and eventually minimally consciousstate. Prior to this study, his total score on the CRS-R was 16, with partial scores of 1 on the communication, 2 on theoromotor/verbal and arousal subscales, 3 on the auditory and visual subscales, and 5 on the motor subscale.

    Billy had suffered a fall accident resulting in severe traumatic brain injury with left temporal cranial fracture, extendedleft occipito-temporal subdural hematoma with midline shift and coma about 2 months prior to the beginning of this study.His coma lasted 1 week and evolved into a vegetative and eventually minimally conscious state. Prior to this study, his totalscore on the CRS-R was 15, with partial scores of 1 on the communication subscale, 2 on the arousal, oromotor/verbal andauditory subscales, 3 on the visual subscale, and 5 on the motor subscale. The participants families had provided informedconsent for this study, which was approved by a scientic and ethics committee.Please cite this article in press as: Lancioni, G. E., et al. Occupation and communication programs for post-coma personswith or without consciousness disorders who show extensive motor impairment and lack of speech. Research inDevelopmental Disabilities (2014), http://dx.doi.org/10.1016/j.ridd.2014.01.029

  • G.E. Lancioni et al. / Research in Developmental Disabilities xxx (2014) xxxxxx 3

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    RIDD-2197; No. of Pages 92.1.2. Position, responses, technology, and stimuli

    Participants were in a reclined position in bed or in a wheelchair during the sessions. All participants were capable ofproducing single hand-closure responses as well as double hand-closure responses (i.e., closing the hand twice within a 2-speriod). The technology involved a two-function device encompassing a pressuremicroswitch and an SGD-related optic sensor,whichwere linked toa computer-aided system(Lancioni, Sigafoos,OReilly,&Singh, 2013). The two-functiondevicewasa small,box-like tool xed into the palm of the participants hand. The pressure microswitch was activated by a single hand-closureresponse. The optic sensorwas activated onlywhen a double hand closure occurred. During Intervention I (see below), only thepressure microswitch was responsive and its activation triggered the computer system that provided a 15-s presentation ofstimuli considered to be pleasant for the participants. During Intervention II (see below), the pressure microswitch and opticsensors were both responsive. Activating the pressure microswitch continued to lead to stimulation while activating the opticsensor triggered a verbal request for caregiver attention. Every double-closure response necessarily encompassed a single-closure response (i.e., a response that triggered stimulation). Single- anddouble-closure responseswere recorded automaticallythrough the computer system. Prompting/guidance by the research assistant was available to ensure (a) a single- or double-closureresponse if theparticipantsdidnotshowany independent responding for23min (duringbaselineand Intervention I)or(b) a double-closure response if the participants did not show this response for 23min (during Intervention II). The responsesperformed through prompting were subtracted from the session totals provided by the computer.

    The stimuli included video clips of singing, music playing, comedy, old lms, and family events. Families had indicatedthese stimuli as examples of what the participants preferred prior to their medical problems and coma. Caregiver attentionconsisted of a research assistant talking to the participant and providing him with some grooming and possibly caressing/hugging for about 14 s.

    2.1.3. Experimental conditions

    The study involved a baseline followed by two intervention phases and an application of the CRS-R. The baseline served toassess the participants frequency of responding (i.e., single- and double-closure responses) independent of anyconsequences. During Intervention I, both responses were recorded but only microswitch activations (i.e., by single-closureresponses) were followed by consequences (i.e., 15-s stimulation). During Intervention II, single-closure responsescontinued to be followed by 15-s stimulation and double-closure responses led to calls for caregiver attention (see above).The two intervention phases were introduced according to a multiple baseline design across participants (Barlow, Nock, &Hersen, 2009). In practice, Intervention I started after four (Adam) or six (Walter and Billy) baseline sessions. Similarly,Intervention II started after nine (Adam) or 15 Intervention-I sessions (Walter and Billy). Baseline and intervention sessionslasted 10min and occurred two to six times a day, according to participants availability. The CRS-R was applied toward theend of Intervention II (i.e., about 5 weeks after its rst, pre-study application; see Participants).

    2.1.3.1. Baseline. During this phase, the technology only recorded the responses. Double-closure responses encompassed(and also led to the recording of) single-closure responses. A new single- or double-closure response was recorded only if itoccurred after an interval of 15 or 14 s from the previous one (i.e., after an interval equivalent to that covered by stimulationevents or caregiver attention during the intervention phases, respectively).

    2.1.3.2. Intervention I. Conditions were as in the baseline phase except that stimulation was available for the participantssingle-closure responses. Each response was followed by a 15-s stimulation period.

    2.1.3.3. Intervention II. Conditions were as in Intervention I with the exception that double-closure responses led to calls forcaregiver attention, as described above.

    2.1.4. CRS-R

    Two experts were simultaneously involved in the application of the CRS-R (i.e., the same twowho had conducted the pre-study CRS-R evaluation) and carried out the scoring on a consensus basis.

    2.2. Results

    The three panels of Fig. 1 show the data for the three participants, respectively. The bars and black circles represent meanfrequencies of single- and double-closure responses per session over blocks of sessions, respectively. The number of sessionsincluded in the blocks is indicated by the numerals above them. During the baseline (i.e., four or six sessions), theparticipants mean frequencies of single-closure responses were below six per session. Their mean frequencies of double-closure responses were below four per session. During Intervention I (i.e., 9 or 15 sessions), the mean frequencies of single-closure responses increased to about 20 (Walter) or 25 (Adam and Billy) per session. Themean frequencies of double-closureresponseswere below three per session. During Intervention II (i.e., 100, 86, and 76 sessions), themean frequencies of single-closure responses were slightly above 20 (Walter) or about 30 (Adam and Billy) per session, and the mean frequencies ofdouble-closure responses increased to about eight (Adam and Walter) or 11 (Billy) per session.

    Theparticipants CRS-R total scores increased to17, 20, and17, respectively (i.e., fromthepre-studyvaluesof15, 16, and15).The participants seemed to mimic the functional use of at least two daily objects and to show non-reexive oral movementsPlease cite this article in press as: Lancioni, G. E., et al. Occupation and communication programs for post-coma personswith or without consciousness disorders who show extensive motor impairment and lack of speech. Research inDevelopmental Disabilities (2014), http://dx.doi.org/10.1016/j.ridd.2014.01.029

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    RIDD-2197; No. of Pages 9(Adam)orarticulationofat least twowords (WalterandBilly). Functionaluseofobjects representsa signofemergence fromtheminimally conscious state (Kalmar & Giacino, 2005; Nakase-Richardson, Yablon, Sherer, Nick, & Evans, 2009).

    3. Study II

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    Fig. 1. The three panels show the data for the three participants, respectively. The bars and black circles represent mean frequencies of single- and double-

    closure responses per session over blocks of sessions, respectively. The number of sessions included in the blocks is indicated by the numerals above them.3.1. Method

    3.1.1. Participants

    The participants (Daniel and Lucy) were 44 and 78 years old, respectively. Daniel had suffered an extensive left fronto-temporo-parietal intraparenchimal hemorrhage and coma about 5 months prior to the beginning of this study. The comacondition lasted slightly more than 2 weeks and was replaced by a vegetative state, soon followed by a minimally consciousstate. By the start of this study, he had emerged from the latter state but presented extensive motor impairment and lack ofspeech. He understood verbal questions concerning his personal/family life and daily events and could respond to themappropriately with minimal head movements. He maintained a clear interest in family and friends general occupations aswell as in work-related contexts and activities. He was rated between the sixth and seventh level of the Rancho Levels ofCognitive Functioning (Hagen, 1998).

    Lucy had suffered a posterior circulation stroke with hippocampal and pontine ischemic lesions about 4 months prior tothis study. The coma condition lasted less than 2 weeks and then evolved into a vegetative state quickly replaced by aminimally conscious state. She also had emerged from such state with extensive motor impairment and lack of speech. LikeDaniel, she seemed capable of understanding others speaking to her and responded correctly to their questions andstatements through eyelid closures. She had the same rating as Daniel at the Rancho Levels of Cognitive Functioning.

    Both participants seemed to enjoy popularmusic/songs, videos of family events, movies or sport, and audio-recordings offamily members. They also seemed interested in listening to telephone messages from family members and friends and insending messages to them. They seemed eager to enter this study and learn to manage the aforementioned leisure andcommunication options. Their families had signed a formal consent for their participation in the study, which had beenapproved by a scientic and ethics committee.

    3.1.2. Position, sessions, and data collection

    During the sessions, Daniel sat in his wheelchair while Lucy lay in bed. Sessions lasted 10min (or until the participantshad ended any engagement started before the 10-min limit; see below). Data collection concerned the frequencies of videos,songs, and audio-recordings of family members activated, as well as the frequencies of messages sent out and received(listened to). Interrater reliability was assessed in about 25% of the sessions, in which two research assistants recorded themeasures simultaneously. Percentages of agreement on the single measures (computed by dividing the number of sessions

    Please cite this article in press as: Lancioni, G. E., et al. Occupation and communication programs for post-coma personswith or without consciousness disorders who show extensive motor impairment and lack of speech. Research inDevelopmental Disabilities (2014), http://dx.doi.org/10.1016/j.ridd.2014.01.029

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    RIDD-2197; No. of Pages 9in which the two research assistants reported the same quantities by the total number of sessions used for reliability andmultiplying by 100) exceeded 90.

    3.1.3. Technology and responses

    The technology available for the two participants involved a computer/control systemwith screen and sound amplier, amobile communication modem, microswitches (i.e., a pressure device and an optic sensor) with interfaces connecting themto the computer, and specic software. The microswitch used for Daniel was a box-like pressure device xed to hiswheelchairs tray (Lancioni, Sigafoos, et al., 2013). Daniel could activate it with simple hand-pressure responses. Themicroswitch used for Lucy was an optic sensor including an infrared light-emitting diode and amini infrared-light detectionunit (Lancioni et al., 2012). Lucy could activate it with eyelid closures longer than 0.7 s. The microswitch was held throughmedical tape slightly above her right cheekbone (i.e., adequately distant from the eye so that it would not interfere withnormal visual functioning). To ensure that the microswitch would detect eyelid closures, a small paper sticker was attachedto the participants right eyelid (Lancioni et al., 2012). The software (written with Borland Delphi Developer Studio, fromInprise Corporation, 2005) ensured that the computer system would (a) show pictorial images of the options available forchoice (i.e., songs, videos, audio-recordings, and text messages) on its screen, (b) verbally identify and scan (illuminate) oneof the images at a time for 5 s, and (c) respond to microswitch activations.

    3.1.4. Songs, videos, and audio-recordings

    If the participants chose one of these options, that is, songs, videos, or audio-recordings (i.e., if they activated themicroswitch while the image of such an option was being scanned), a new set of three to six pictorial images related tothe option chosen would appear on the computer screen. Each of the images was automatically scanned for 5 s. If theparticipants selected one of the song or video options, the computer system played such a song or showed that video forabout 2min. The participants could interrupt the song or video at any time by activating the microswitch. If the participantsselected one of the audio-recording options (i.e., the picture/name of one of his or her familymembers), the computer playeda voice recording of that person talking to the participant or telling him or her about a family event for about 1.5min. Thesystem automatically reset the original screen with the four choice options.

    3.1.5. Text messaging

    If the participants chose text messaging, the computer system verbally acknowledged that they could send messages tofamily members, relatives, friends, and staff. Two or three persons per category were available. The system presented thecategories individually at intervals of 5 s.When the participant selected a category (i.e., viamicroswitch activationwithin 5 sfrom its presentation), the system named the persons included in that category, one at a time. Selection of a person/partner,via microswitch activation, led the system to present the four message topics available (e.g., telling the partner about his orher condition and asking the partner for news). The systemverbalized eachmessage topic individually (Lancioni, Singh, et al.,2013). As soon as the participant selected a message topic, via microswitch activation, the system started to verbalize thefour to six specicmessages available for that topic. Depending on the topic, themessages could consist of phrases such as: Iam doing OK today, How is your work going?, What have you done today?, and When can you visit me? The systemverbalized the messages individually. When the participant selected a message, via microswitch activation, the system sentthat message out. An incoming message was signaled through beeps and a verbal announcement, which could be repeated.The participant would get the name of the sender and the message read out by activating the microswitch. After sending orreading a message, the system reset the original screen with the four choice options.

    3.1.6. Experimental conditions

    For each participant, the study was carried out according to an ABAB design, in which the A and B represented baselineand intervention phases, respectively (Barlow et al., 2009).

    3.1.6.1. Baseline phases. Each baseline phase included two sessions, in which the participants were provided with acomputer showing song, video, and audio-recording options on its screen, a mouse to activate those options, and a mobiletelephone for text messaging. Lack of responding after about 3min led the research assistant to activate one of theaforementioned options or send a message for the participants.

    3.1.6.2. Intervention phases. The intervention phases included 44 and 68 sessions for Daniel, and 42 and 95 sessions for Lucy.During these sessions, the full technology package (i.e., including the microswitch) was available and worked as describedabove. The intervention sessions of rst phase (i.e., 44 and 42) were preceded by seven practice sessions, in which theresearch assistant helped the participants activate and experience each of the choice options by performing the responsesequences required.

    3.2. Results

    Figs. 2 and 3 summarize the data for Daniel and Lucy, respectively. The bars in their entirety (i.e., full height) representmean cumulative frequencies of options selected per session over blocks of sessions. Thewhite sections of the bars representPlease cite this article in press as: Lancioni, G. E., et al. Occupation and communication programs for post-coma personswith or without consciousness disorders who show extensive motor impairment and lack of speech. Research inDevelopmental Disabilities (2014), http://dx.doi.org/10.1016/j.ridd.2014.01.029

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    RIDD-2197; No. of Pages 90

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    Fig. 2. Daniels data. The bars represent mean cumulative frequencies of options selected per session over blocks of sessions. The white sections represent

    mean frequencies for songs and videos together; the gray sections represent mean frequencies for audio-recordings of family members and text messages

    sent out and received together. The number of sessions included in the blocks is indicated by the numerals above them.

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    Fig. 3. Lucys data plotted as in Fig. 2.mean frequencies for songs and videos together (i.e., leisure options); the gray sections represent mean frequencies foraudio-recordings of familymembers and textmessages sent out and received together (i.e., family-communication options).The number of sessions included in the blocks/bars is shown by the numerals above them.

    During the rst baseline, the participants did not perform any choice response (i.e., did not use the mouse or the mobiletelephone). During the rst intervention phase, both participants were successful in activating each of the choice optionsavailable. The mean cumulative frequencies of options selected per session were approximately four and a half for bothparticipants. Daniel seemed to have a slightly higher frequency of choices for the family-communication options while Lucyhad similar frequencies for leisure and family-communication options. The data for the second baseline and secondintervention phase were similar to those mentioned above.

    4. General discussion

    The results of the two studies strengthen the positive evidence on the benets of technology-aided programs for post-coma persons with multiple disabilities (Lancioni et al., 2010, 2012; Lancioni, OReilly, et al., 2013; Lancioni, OReilly, Singh,Buonocunto, et al., 2011). Specically, they show the relevance of those programs for providing constructive/leisureengagement aswell as interaction and communication opportunities to patients in aminimally conscious state or emerging/emerged from such state and affected by extensivemotor disabilities and lack of speech. Study I adds to previous literature inthat the same response scheme was used for regulating stimulation input and calling for caregiver attention. Study IIreplicated previous ndings on the possibility of enhancing leisure engagement and communication options, while addingthe opportunity of listening to audio-recordings of family members. Such opportunity may prove emotionally relevantparticularly for patients who spend most of their time away from their loved ones (e.g., in rehabilitation/care centers). Inlight of these ndings, several considerations may be in order.

    First, the technology available in Study I allowed the participants to access environmental stimulation and also pursuecontact with the caregivers withminimal extra response demands. Their enjoyment of the environmental stimulation couldeasily be implied from the rapid increase of their responding during Intervention I (Sunderland, Catalano, & Kendall, 2009).Indeed such an increase could only be explained through themotivating/reinforcing value of the stimulation (Catania, 2007;Kazdin, 2001). Their double-closure response seemed to decline or almost disappear during this period to increase in a clearmanner during Intervention II. The fact that this behavior trend was visible for all three participants may allow one to arguethat this increase was not accidental but based on their discovery and enjoyment of the caregivers attention (Barlow et al.,2009; Kennedy, 2005).

    Please cite this article in press as: Lancioni, G. E., et al. Occupation and communication programs for post-coma personswith or without consciousness disorders who show extensive motor impairment and lack of speech. Research inDevelopmental Disabilities (2014), http://dx.doi.org/10.1016/j.ridd.2014.01.029

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    RIDD-2197; No. of Pages 9Second, the program applied in Study I could be considered relevant for the condition of persons who are at the upperlevel of theminimally conscious state or show signs of emergence from such state. In fact, the program is directed at helpingthem increase their alertness and self-determination, regulate their stimulation input, and enhance their contact/communicationwith their caregiver. All these aspects seem to be totally in linewithwhatwould be required from a programaimed at improving their recovery process and their overall situation and quality of life (Fischer, Langner, Birbaumer, &Brocke, 2008; Man, Yip, Ko, Kwok, & Tsang, 2010; McDougall, Evans, & Baldwin, 2010; Munde, Vlaskamp, Ruijssenaars, &Nakken, 2009; Wall, Turner, & Clarke, 2013; Williamson et al., 2013). Although there is no evidence to suggest that theimprovement in the participants CRS-R scores near the end of Intervention II (i.e., compared to their pre-study scores) wasrelated to the intervention program, one might argue that the program had a facilitative effect toward this achievement (DiStefano et al., 2012).

    Third, the results of Study II are very encouraging as to the possibility of using technology to enable persons emerged froma minimally conscious state, but with extensive motor disabilities and lack of speech, to manage leisure engagement andaffection and communication options (Lancioni, Singh, et al., 2013). The types of program events/options available for theparticipants can be selected based on ones view of what is more functional and benecial for them (Bache & Derwent, 2008;Jochems, Vetter, & Schlick, 2013; Kagohara, 2011; Lamontagne, Routhier, & Auger, 2013; Naslund & Gardelli, 2013). In thisstudy, the viewwas that (a) leisure and communication opportunities are critical for these persons, and (b) audio-recordingsof family members may represent an important affective event, a relevant addition to music and videos, and a complementto messaging. Obviously, other forms of decisions (with other program contents) could be made for different participants.

    Fourth, the possibility to send and receive messages seems to be a great opportunity for maintaining forms ofcommunication with distant people who continue to be emotionally/socially relevant for the participants (Behn, Togher,Power, & Heard, 2012; Casey, 2011; Lancion, OReilly, Singh, Sigafoos, et al., 2011; Togher, Power, Tate, McDonald, & Rietdijk,2010). The compromise of having the participants choose among pre-programmed messages could be seen as restrictive ofthe participants role and communication spontaneity. At the same time, it could also be seen as one of the few options toallow persons without speech and ability to write to maintain a meaningful interaction with others. Possible technologydevelopments could open new perspectives in this area that at present are not yet easy to detail (e.g., providing ways for theparticipants to assemble messages rather than choosing them) (Fried-Oken, Beukelman, & Hux, 2012; Lancioni, Singh, et al.,2013; McNaughton & Light, 2013; Posatskiy & Chau, 2012; Ripat & Woodgate, 2011; Scherer, 2012).

    In conclusion, the positive results obtained in these two studies could be seen as additional evidence useful to extend thetechnology resources available for post-coma persons with multiple disabilities. New research would need to (a) extend theuse of the programs to other individuals and research/rehabilitation contexts to further assess their applicability and identifyways of upgrading them (Barlow et al., 2009; Kennedy, 2005), (b) investigate the participants satisfactionwith them so as torespond more directly to their requirements, and (c) determine caregivers and rehabilitation staffs level of support for theprograms available and their opinion about possible intervention improvements (Callahan, Henson, & Cowan, 2008;Jumisko, Lexell, & Soderberg, 2009; Lancioni et al., 2006; Scherer, Craddock, & Mackeogh, 2011; Scherer, 2012).

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    RIDD-2197; No. of Pages 9Please cite this article in press as: Lancioni, G. E., et al. Occupation and communication programs for post-coma personswith or without consciousness disorders who show extensive motor impairment and lack of speech. Research inDevelopmental Disabilities (2014), http://dx.doi.org/10.1016/j.ridd.2014.01.029

    Occupation and communication programs for post-coma persons with or without consciousness disorders who show extensive motor impairment and lack of speechIntroductionStudy IMethodParticipantsPosition, responses, technology, and stimuliExperimental conditionsBaselineIntervention IIntervention II

    CRS-R

    Results

    Study IIMethodParticipantsPosition, sessions, and data collectionTechnology and responsesSongs, videos, and audio-recordingsText messagingExperimental conditionsBaseline phasesIntervention phases

    Results

    General discussionReferences