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Supporting self-managed leisure engagement and communication in post-coma persons with multiple disabilities
Research in Developmental Disabilities 38 (2015) 75–83
Contents lists available at ScienceDirect
Research in Developmental Disabilities
Supporting self-managed leisure engagement and communication in post-coma persons with multiple disabilities Giulio E. Lancioni a,*, Nirbhay N. Singh b, Mark F. O’Reilly c, Jeff Sigafoos d, Marta Olivetti Belardinelli e, Francesca Buonocunto f, Fiora D’Amico f, Jorge Navarro f, Crocifissa Lanzilotti f, Floriana Denitto g, Marina De Tommaso a, Marisa Megna a a
University of Bari, Italy Medical College of Georgia, Georgia Regents University, Augusta, USA c University of Texas at Austin, USA d Victoria University of Wellington, New Zealand e ‘‘Sapienza’’ University of Rome, Italy f S. Raffaele Rehabilitation and Care Centers, Ceglie and Alberobello, Italy g ISPE Medical Care Center, Mola di Bari, Italy b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 7 December 2014 Accepted 9 December 2014 Available online
Post-coma persons affected by extensive motor impairment and lack of speech, with or without disorders of consciousness, need special support to manage leisure engagement and communication. These two studies extended research efforts aimed at assessing basic technology-aided programs to provide such support. Specifically, Study I assessed a program for promoting independent stimulation choice in four post-coma persons who combined motor and speech disabilities with disorders of consciousness (i.e., were rated between the minimally conscious state and the emergence from such state). Study II assessed a program for promoting independent television operation and basic communication in three post-coma participants who, contrary to those involved in Study I, did not have disorders of consciousness (i.e., had emerged from a minimally conscious state). The results of the studies were largely positive with substantial levels of independent stimulation choice and access for the participants of Study I and independent television operation and communication for the participants of Study II. The results were analyzed in relation to previous data in the area and in terms of their implications for daily contexts dealing with these persons. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Technology-aided programs Minimally conscious state (MCS) Emergence from MCS Leisure engagement Communication
* Corresponding author at: Department of Neuroscience and Sense Organs, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. Tel.: +39 0805521410. E-mail address: [email protected] (G.E. Lancioni). http://dx.doi.org/10.1016/j.ridd.2014.12.015 0891-4222/ß 2014 Elsevier Ltd. All rights reserved.
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1. Introduction Post-coma persons affected by extensive motor impairment and lack of speech, with or without disorders of consciousness, frequently fail to manage leisure engagement (i.e., occupation and regulation of their stimulation input) and interaction/communication with their context (Bruno, Vanhaudenhuyse, Thibaut, Moonen, & Laureys, 2011; De Jong, 2013; Eifert, Maurer-Karattup, & Schorl, 2013; Elliott & Walker, 2005; Giacino, 1996; Giacino, Fins, Machado, & Schiff, 2012; Katz, Polyak, Coughlan, Nichols, & Roche, 2009; Lancioni et al., 2010; Nakase-Richardson, Yablon, Sherer, Nick, & Evans, 2009). Given the severity of their situation and the importance of helping them achieve self-managed leisure engagement and basic communication, growing emphasis has been placed on the need to develop technology-aided programs for assisting them in these skill areas (Conneeley, 2012; Frankoff & Hatfield, 2011; Lancioni et al., 2012; Lancioni, Bosco, et al., 2014; McGilton et al., 2011; Mu¨ller-Patz, Pokorny, Klobassa, & Horki, 2013; Naci et al., 2012; Scherer, 2012; Seel et al., 2013; Wallace & Bradshaw, 2011). During the last few years, a number of technology-aided programs have been evaluated. For example, Lancioni, Singh, O’Reilly, Sigafoos, Alberti, et al. (2011) assessed a program to enable three post-coma adults with multiple disabilities including pervasive motor impairment, lack of speech, and a minimally conscious state (MCS) to access environmental stimuli independently. In practice, the participants could access 10–15 s of preferred stimulation each time they activated a microswitch device via a full eyelid closure, a small change of fingers/hand position, and a protracted eyelid closure, respectively. The microswitches were a camera device, a touch pad, and an optic sensor. All three participants showed clear response increases (i.e., strengthening self-management of stimulation input) during the application of the program. Lancioni et al. (2012) set up a program to enable three post-coma adults with motor impairment and lack of speech who were emerging from a MCS to choose among various stimulation events. A computer system presented them 5-s samples of the stimuli available (i.e., one at a time). If they activated a pressure microswitch placed into the palm of their hands within the 6-s interval after the sample, the computer ensured the occurrence of the matching stimulus event (song, video or caregiver procedure) for 20–25 s. If they activated the microswitch shortly after the end of one of such events, a repetition or extension of the event occurred. If they did not activate their microswitch after a sample or the end of a stimulus event, the computer entered a brief pause and then presented the next sample available in the programmed sequence. Data showed that the three participants had high frequencies of choice responses in relation to stimuli considered preferred for them. Lancioni, Singh, et al. (2014) developed a program to enable two post-coma adults with motor impairment and lack of speech who had no disorders of consciousness to switch on music and videos, make requests to the caregiver, and send text messages to family members and friends. The participants were in front of a computer screen that showed pictorial images of the four options available. These options were automatically scanned (lit) and the participants could choose any of them by activating a microswitch (a touch/pressure device fixed inside their hands) when it was lit. Choice of one of the first three options caused the appearance of a new screen with six new images related to the option chosen (e.g., six singers/songs). Choice of one of those images led the computer to play the corresponding song or video or to verbalize the corresponding request so that the caregiver could satisfy it. If the messaging option was selected, the computer guided the participants to choose the person to whom the message should be sent, and the topic and type of message to send from a pool of available messages. Results were highly encouraging with both participants managing the leisure and communication options successfully. Although the results of the aforementioned studies and other studies in the area appear quite encouraging, the number of participants involved in the research is relatively small (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, et al., 2011; Lancioni, O’Reilly, et al., 2013; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, et al., 2013; Lancioni, Bosco, et al. 2014). Given this situation, new research seems necessary to (a) extend the number of participants involved and add new evidence and (b) develop adaptations of the programs available to meet the needs of persons with different characteristics and interests (Barlow, Nock, & Hersen, 2009; Kennedy, 2005; Lancioni, Bosco, et al., 2014; McNaughton & Light, 2013; Posatskiy & Chau, 2012). These two studies pursued the aforementioned goals. Study I extended the evaluation of an existing technology-aided program for stimulus choice (i.e., Lancioni et al., 2012) with four new post-coma adults who were apparently in the process of emerging from a MCS and were affected by multiple disabilities. Study II assessed a technology-aided program, which was specifically arranged to enable three post-coma persons with multiple disabilities, but no consciousness disorders, to operate a special television device and make requests or statements. 2. Study I 2.1. Method 2.1.1. Participants The four post-coma participants (Janine, Thomas, Margaret, and Richard) were in rehabilitation or care centers and were diagnosed as borderline between the MCS and the emergence from such state. In fact, their performance on the communication subscale of the Coma Recovery Scale-Revised (CRS-R; Kalmar & Giacino, 2005) was clearly exceeding the requirements for a score of 1 (i.e., MCS) but remained somewhat short of the requirements for a score of 2 (i.e., Emergence
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from a MCS). Their scores on the visual and auditory subscales were 2 or 3. Their scores on the alertness and motor subscales were 2. Their scores on the oral/motor subscale were 2 except for Richard who had 1. They presented with pervasive motor impairment, lack of speech, and absence of any practical/functional skills, following brain injury and coma. Janine was 31 years old and had suffered cardiac arrest with subsequent anoxic encephalopathy about 4 years prior to this study. Her coma lasted about 4 weeks. Thomas was 81 years old and had incurred a work accident with right fronto-temporal hemorrhage and consequent hematoma surgically evacuated about 10 months prior to this study. His coma lasted about 3 weeks. Margaret was 39 years old and had suffered a severe fall causing occipital subdural hematoma and diffuse axonal injury on cerebellar and left temporo-parietal regions about 16 months prior to this study. Her coma lasted about 2 weeks. Richard was 63 years old and had suffered left capsular-thalamic hemorrhage with subsequent edema and extensive frontotemporal ischemic lesion about 18 months prior to this study. His coma lasted about 3 weeks. Reports from staff and families and direct observations indicated that the participants enjoyed videos with music/songs, films and/or sport events, and family members interacting with (talking to) them (Lancioni, Bosco, et al., 2014). It was therefore assumed that they would be quite interested in (a) accessing (choosing among) those stimulus events and possibly (b) participating in this study, which provided them with the tools to deal with those stimuli successfully. Their families had signed a consent form for this study, which had been approved by a scientific and ethics committee. 2.1.2. Position, stimulus events, and sessions The participants were in bed or in a wheelchair during the sessions. Six or eight sets of 15 stimulus events were used, one set per session in a rotation fashion. Each set involved (a) 12 videos with music and song scenes or family members talking to them, and (b) 3 videos with instruments producing distorted/blurred sounds. Music and songs and family members talking to them were considered preferred events (see participants). Distorted/blurred sounds were considered non-preferred events and were interspersed with the others as a check on the participants’ choice purposefulness. Purposefulness was inferred if they showed high levels of responding to preferred events and general avoidance of the non-preferred events (Lancioni, Singh, O’Reilly, Sigafoos, Oliva, et al., 2013; Lancioni, Bosco, et al., 2014). 2.1.3. Technology, responses, and data recording The technology involved (a) a computer system with screen and sound amplifier that automatically presented the stimulus events available in the session and (b) a microswitch that the participant used to choose among those events. The microswitch available for Janine, Margaret, and Richard was an optic sensor involving an infrared light-emitting diode and a mini infrared light-detection unit (Lancioni, Sigafoos, O’Reilly, & Singh, 2013). For Janine, the microswitch was fixed on the face (i.e., pointing to the right side of her mouth) and was combined with a mini black sticker at the corner of the mouth. The microswitch was activated by a smile (mouth widening) response bringing the sticker under the sensor. For Margaret and Richard, the microswitch was fixed on the right cheekbone and was combined with a mini paper sticker attached to the corresponding eyelid (Lancioni, Sigafoos, et al., 2013). The microswitch was activated by prolonged eyelid closure (i.e., longer than 0.8 s). The microswitch available for Thomas was a touch/pressure membrane attached to his right thumb. The microswitch was activated when Thomas moved the thumb against the index finger. The computer system presented a 5-s sample of each of the 15 stimulus events available in the session. During the baseline and the first 10–15 sessions of the intervention phase, the sample was accompanied by an attention-calling verbal expression such as ‘‘Want it?’’ or ‘‘Like it?’’ The expression was then made less audible and finally eliminated. During baseline, no consequences were available for the participants’ responses (i.e., microswitch activations). During the intervention, the following conditions applied. If a response (microswitch activation) occurred within the 6 s that followed a stimulus sample, the system presented the matching stimulus event for 20 s. If a response occurred within 6 s from the end of a 20-s stimulus presentation, the system provided an additional 20 s of the same stimulus event. Absence of responding within 6 s from the end of a sample or a 20-s stimulus presentation led the system to pause for about 10 s and then present the next sample of the sequence. One to three sessions per day took place. A session lasted until all stimulus samples had been presented. The samples (i.e., stimulus events) chosen and the 20-s stimulus presentations occurred per session were automatically recorded via the computer system. 2.1.4. Experimental conditions The study was carried out according to a non-concurrent multiple baseline design across participants (Barlow et al., 2009). Janine and Thomas had two baseline sessions while Margaret and Richard had four baseline sessions. The intervention phase included 98, 119, 109, and 91 sessions for the four participants, respectively. 2.1.4.1. Baseline. The participants were provided with the microswitch for the smile, eyelid or thumb response and the computer system. The system presented the samples of the stimulus events available and recorded the participants’ responses, as described above. The responses were never followed by consequences (i.e., 20-s stimulus presentations). 2.1.4.2. Intervention. During the intervention phase, the participants had the microswitch and the computer system, which worked as described in Section 2.1.3. The 91-119 intervention sessions were preceded by six or seven practice sessions, during which the participants were led to respond to samples of positive stimulus events and after the end of 20-s stimulus presentations (i.e., to experience the consequences of their responding).
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2.2. Results
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[(Fig._1)TD$IG]
The four panels of Fig. 1 summarize the data for Janine, Thomas, Margaret, and Richard, respectively. The bars and black squares indicate mean frequencies of preferred stimulus events chosen per session out of the 12 available (i.e., videos with music/songs, films and/or sport events, and family members talking) and mean frequencies of 20-s stimulus presentations occurred per session, respectively, over blocks of sessions. The number of sessions included in the blocks (i.e., bar-square combinations) is indicated by the numeral above them. During the baseline phase, the mean frequencies of positive stimulus events chosen were between two (Margaret) and above five (Richard). Choices did not have consequences, thus the mean frequencies of 20-s stimulus presentations were zero (see Fig. 1). During the intervention phase, the participants’ mean frequencies of preferred stimulus events chosen per session were between near eight (Janine) and near nine (Thomas and Margaret). The mean frequencies of 20-s stimulus presentations per session were between about 25 (Janine) and well over 45 (Richard). Actually, the participants obtained several repetitions of various (preferred) stimulus events by producing a response soon after their presentation ended. The mean frequencies of non-preferred stimulus events chosen were close to zero during the baseline and intervention phases, suggesting purposeful choice behavior.
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Blocks of Sessions Fig. 1. The four panels summarize the data for Janine, Thomas, Margaret, and Richard, respectively. The bars and black squares indicate mean frequencies of preferred stimulus events chosen per session out of the 12 available (i.e., videos with music/songs, films and/or sport events, and family members talking) and mean frequencies of 20-s stimulus presentations occurred per session, respectively, over blocks of sessions. The number of sessions included in the blocks is indicated by the numeral above them. The frequency values on the right ordinates of the graphs differ across participants.
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3. Study II 3.1. Method 3.1.1. Participants The three post-coma participants (Juan, Steve, and Victor) were in a rehabilitation center and were diagnosed as emerged from the MCS. They had a score of 2 on the communication subscale of the CRS-R and were rated between the sixth and seventh level of the Rancho Levels of Cognitive Functioning (Hagen, 1998). They understood simple verbal questions and could respond to them appropriately with head or eye movements. All three presented with extensive motor impairment, lack of speech and absence of any practical/functional skills. Juan was 71 years old and had been involved in a road accident with diffuse axonal injury on right fronto-temporal and left parietal regions and splenium of corpus callosum about 4 months prior to this study. Steve was 80 years old and had suffered a severe fall causing a left fronto-temporo-parietal subdural hematoma, which was surgically evacuated about 3 months prior to this study. Victor was 66 years old and had suffered right thalamic and intra ventricular hemorrhage with subsequent cerebral edema and extensive fronto-parietotemporal ischemic lesions about 3 months prior to this study. The participants’ coma conditions lasted about 2 weeks. Reports from staff and families and direct observations indicated that the participants enjoyed watching television but were totally dependent on others to operate a television device. They were also known to have serious problems to express their needs or their feelings and to make requests. It was therefore assumed that they would be quite interested in entering a program providing them with the technology to deal with those two issues. Indeed, they confirmed such an interest (i.e., with eye and head responses) when the program was illustrated to them. Their families had signed a consent form for this study, which had been approved by a scientific and ethics committee. 3.1.2. Position, technology, and response The participants were in bed or in a wheelchair during the sessions. They were provided with a computer system with screen and sound amplifier, and a microswitch. The computer system served to (a) show pictorial images of the two program options available for choice (i.e., television and communication) on its screen, (b) verbally identify and scan (light) one of the images at a time for 4 s, and (c) respond to microswitch activations operated by the participant. Activating the microswitch when the system was on the scanning mode opened the option being scanned at the time (see below). The microswitch used for each participant was a touch sensor fixed inside his right or left hand. Minimal hand closure movements were sufficient for microswitch activation. 3.1.2.1. Television. If the participant opened the television option, the computer system tuned into the first of six preselected television channels, showing that channel’s programs on its screen. This was possible through a commercial software package (USB TDT AVerTV Volar Green HD A835-ECO plus mini antenna; Lancioni, Ferlisi, et al., 2014). Any new microswitch activation turned on the next channel of the sequence. Microswitch activation in connection with the last (i.e., sixth) channel of the sequence switched the television off and restored the original screen with the two program options. 3.1.2.2. Communication. If the participants opened the communication option, the computer screen showed three boxes, which were scanned (lit) in sequence and identified verbally. Their verbal labels were: ‘‘I need’’, ‘‘I feel’’, and ‘‘I would like to ask’’, respectively. Microswitch activation in relation to the ‘‘I need’’ box opened a new screen with five or six words/phrases indicating needs, such as ‘‘pulled up’’, ‘‘drink’’, ‘‘washing’’, and ‘‘massage’’. The words/phrases were scanned and read by the computer system automatically. The selection of one of them by microswitch activation led the computer to verbalize the related sentence aloud (e.g., ‘‘I need to be pulled up’’ and ‘‘I need to drink’’) so that the caregiver could respond appropriately. Microswitch activation in relation to the ‘‘I feel’’ or ‘‘I would like to ask’’ boxes had similar consequences. That is, the participant was faced with a new screen with five or six different words/phrases concerning either feelings or requests, which were scanned and read automatically. The selection of a feeling phrase or a request phrase led the computer to verbalize the related sentence aloud. Examples of those sentences were ‘‘I am happy’’, ‘‘I am angry’’, ‘‘I am tired’’, ‘‘How is the weather?’’, ‘‘Is my daughter (NAME) coming today?’’, and ‘‘What are the day’s news?’’ Caregiver responses to the feeling sentences could vary from excited verbal comments in relation to ‘‘I am happy’’ to little interactions to provide support and make environmental changes in relation to sentences such as ‘‘I am sad’’ or ‘‘I am angry’’. The responses to request sentences could vary from simple verbal communications (e.g., describing the weather) to the reading of brief sections of the newspaper (e.g., summarizing the day’s news). 3.1.3. Experimental conditions and data recording The study was carried out according to a non-concurrent multiple baseline design across participants (Barlow et al., 2009). Juan had two baseline sessions, while Steve and Victor had four baseline sessions. The intervention phase included 108, 51, and 102 sessions for the three participants, respectively. Sessions lasted 10 min (or until a communication started before the 10-min limit had ended) and occurred two to four times a day. Data collection involved the time spent watching television, the number of channels watched for more than 20 s (i.e., longer than the time required for screening and transition), and the number of communication sentences activated. Interrater agreement was assessed in about 25% of the sessions, in which two research assistants were involved in recording the measures. Percentages of agreement on the single
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measures (computed by dividing the number of sessions in which the research assistants reported television watching times differing less than 40 s or identical frequencies of channels or sentences by the total number of reliability sessions and multiplying by 100) exceeded 90 for all participants. 3.1.3.1. Baseline. The participants were provided with a computer showing the television and communication options on its screen, and a mouse to activate those options. Lack of responding after about 3-4 min led the research assistant to activate the television option and progress through several channels so as to minimize possible frustration (Lancioni, Singh, et al., 2014). 3.1.3.2. Intervention. During the intervention sessions, the full technology package (i.e., including the microswitch) was available and worked as described within Section 3.1.2. The intervention sessions were preceded by six or seven practice sessions, during which the research assistant led the participants to activate and experience each of the choice options, using the response sequences described above. 3.2. Results The three panels of Fig. 2 summarize the data for Juan, Steve, and Victor, respectively. The bars indicate the mean number of minutes the participants watched television per session over a block of sessions. The black squares and empty circles represent the mean number of channels watched for more than 20 s, and the mean number of communication sentences activated per session, respectively, over the same blocks of sessions. The number of sessions included in the blocks is indicated by the numeral above the bars. During the baseline sessions, the participants did not activate any of the options available (i.e., did not use the mouse). During the intervention phase, all three participants were successful in activating each of the options available. Their mean [(Fig._2)TD$IG]
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Blocks of Sessions Fig. 2. The three panels summarize the data for Juan, Steve, and Victor, respectively. The bars indicate the mean number of minutes the participants watched television per session over a block of sessions. The black squares and empty circles represent the mean number of channels watched for more than 20 s, and the mean number of communication sentences activated per session, respectively, over the same blocks of sessions. The number of sessions included in the blocks is indicated by the numeral above the bars.
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television watching times varied from nearly 8.5 min (Victor) to about 7.5 min (Steve) per session. The mean numbers of channels watched for more than 20 s varied between about four and a half (Steve) and three (Juan). The mean numbers of communication sentences activated were about one per session for Juan and Victor and over two per session for Steve. 4. General discussion The results of Study I add new evidence in support of the beneficial impact of technology-aided choice programs for postcoma persons in the process of emerging from a MCS (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, et al., 2011; Lancioni, Bosco, et al., 2014). The results of Study II show the potential of a novel version of leisure and communication program for post-coma persons with no disorders of consciousness and with clear interest in their surroundings (Lancioni, Bosco, et al., 2014). In light of the results of these two studies and of previous studies in the area, a number of considerations can be put forward. Study I confirmed that persons emerging from a MCS with pervasive motor impairment and lack of speech can be realistically helped to choose among multiple leisure stimuli through a program that presents such stimuli automatically. Their choice performance seemed largely purposeful. In fact, they chose most of the stimuli considered to be positive and for many of the stimuli they sought multiple 20-s presentations (i.e., by responding as soon as any such presentation ended). By contrast, they fairly consistently abstained from responding to the stimuli considered non-preferred. Providing these persons the opportunity to have an active role (i.e., to exercise self-determination) may serve to promote their alertness and enjoyment, and possibly improve their status and mood (Fischer, Langner, Birbaumer, & Brocke, 2008; Lancioni, Bosco, et al., 2014; Man, Yip, Ko, Kwok, & Tsang, 2010; McDougall, Evans, & Baldwin, 2010; Munde, Vlaskamp, Ruijssenaars, & Nakken, 2009; Sunderland, Catalano, & Kendall, 2009; Taylor, Aird, Tate, & Lammi, 2007; Whyte & Nakase-Richarson, 2013). Within the same program arrangement, they can also decide their engagement time (length of the session) based on the level of their personal involvement/interest and their conditions (Foley & Ferri, 2012). Better conditions and/or higher levels of interest would lead them to produce higher levels of responses (choices) with consequent extension of the engagement time (i.e., as shown by Margaret and Richard) (Catania, 2012; Kazdin, 2001; Pierce & Cheney, 2008). The results of Study II show that variations of the early leisure and communication programs can be arranged and successfully employed. The program components used in Study II are fairly simple and relatively narrow in scope compared to those, which were previously used (i.e., combinations of music, songs, requests, messaging and telephone options). Even so, allowing the persons to engage in one of the most popular leisure occupation (i.e., watching television) in a totally independent manner, with the possibility of changing channels and switching the device off, can be considered highly valuable in most daily contexts. Obviously, the occupation option needs to be combined with (supplemented by) an effective communication channel. Effective communication satisfies the basic requirements for functional interaction and can be considered critically important for the participants as well as their caregivers (Baxter, Enderby, Evans, & Judge, 2012; Lancioni, Singh, O’Reilly, Sigafoos, Oliva, et al., 2013). In this study, the communication channel allowed the participants to request for stimuli/events that they needed and information that they desired as well as to express their feelings in general. The participants seemed to use such channel with a certain level of regularity (i.e., about once or twice per session in the average). This channel could be easily extended with the addition of messaging and telephone options whenever the participants and caregivers would find those options relevant (Lancioni, Bosco, et al., 2014; Lancioni, Singh, et al., 2014). In essence, the two components of the program used in Study II could be combined with any of the components of previous programs for post-coma persons with relatively high levels of functioning without any technical difficulties. The technology packages required for the two programs involve a computer system with specific software and a microswitch. The use of such packages may be considered rather straightforward for participants and caregivers. Their cost of about US$2000, moreover, may be deemed as affordable for most care and rehabilitation contexts (Dahlin & Ryde´n, 2011; Hubbard Winkler et al., 2010; Wallace, 2011). New efforts may be directed at the acquisition of new microswitches to extend the variety of tools available for persons with pervasive motor disabilities and difficulties to tolerate devices touching their face/body (e.g., optic sensors for eyelid responses) (Bauer & Elsaesser, 2012; Foley & Ferri, 2012; Gibson, Carnevale, & King, 2012; Lancioni, Sigafoos, et al., 2013; Lancioni, Bosco, et al., 2014; Na¨slund & Gardelli, 2013; Posatskiy & Chau, 2012; Seel et al., 2013; Shih, Wang, Chang, & Kung, 2012). Other research efforts may be directed at investigating various combinations of options that could maximize the suitability of the programs to different types of participants (Fritz, Peters, Merlo, & Donley, 2013; Lancioni, Singh, et al., 2014; Taheri et al., 2014). In conclusion, Study I adds new evidence about the possibility of post-coma persons in the process of emerging from a MCS to manage a choice program while Study II shows the effectiveness of a new and simple program package (television and basic communication) for post-coma persons emerged from a MCS. Taken together, the results of the two studies stress the relevance of technology-aided programs for enhancing the performance level (recovery process) of post-coma persons with multiple disabilities. New research in the area could involve efforts to (a) determine the generality of the present data and the adaptability of the reported programs (i.e., with possibly new technology solutions) to different situations and participants (Barlow et al., 2009; De Joode, Van Boxtel, Verhey, & Van Heugten, 2012; Kennedy, 2005), (b) examine the participants’ satisfaction with the programs (i.e., possible indices of happiness during the sessions and/or desire to start the sessions), and (c) assess families and staff’s opinions about the programs and suggestions for improving them (Callahan, Henson, & Cowan, 2008; Lamontagne, Routhier, & Auger, 2013; Lancioni et al., 2006; Lenker, Harris, Taugher, & Smith, 2013; Lindstedt & Umb-Carlsson, 2013; Pouliquen et al., 2013; Ripat & Woodgate, 2011).
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Two men with amyotrophic lateral sclerosis operate a computer-aided television system through mouth or throat microswitches. Perceptual and Motor Skills: Physical Development and Measurement, 118, 883–889. Lancioni, G. E., Singh, N. N., O’Reilly, M. F., Sigafoos, J., Oliva, D., Buonocunto, F., et al. (2014). Post-coma persons with multiple disabilities use assistive technology for their leisure engagement and communication. NeuroRehabilitation, 34, 749–758. Lenker, J. A., Harris, F., Taugher, M., & Smith, R. O. (2013). Consumer perspectives on assistive technology outcomes. Disability and Rehabilitation: Assistive Technology, 8, 373–380. Lindstedt, H., & Umb-Carlsson, O. (2013). Cognitive assistive technology and professional support in everyday life for adults with ADHD. Disability and Rehabilitation: Assistive Technology, 8, 402–408. Man, D. W. K., Yip, P. F. W., Ko, T. H. L., Kwok, J. K. L., & Tsang, M. Y. (2010). Quality of life of individuals with acquired brain injuries. 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Contents lists available at ScienceDirect
Research in Developmental Disabilities
Supporting self-managed leisure engagement and communication in post-coma persons with multiple disabilities Giulio E. Lancioni a,*, Nirbhay N. Singh b, Mark F. O’Reilly c, Jeff Sigafoos d, Marta Olivetti Belardinelli e, Francesca Buonocunto f, Fiora D’Amico f, Jorge Navarro f, Crocifissa Lanzilotti f, Floriana Denitto g, Marina De Tommaso a, Marisa Megna a a
University of Bari, Italy Medical College of Georgia, Georgia Regents University, Augusta, USA c University of Texas at Austin, USA d Victoria University of Wellington, New Zealand e ‘‘Sapienza’’ University of Rome, Italy f S. Raffaele Rehabilitation and Care Centers, Ceglie and Alberobello, Italy g ISPE Medical Care Center, Mola di Bari, Italy b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 7 December 2014 Accepted 9 December 2014 Available online
Post-coma persons affected by extensive motor impairment and lack of speech, with or without disorders of consciousness, need special support to manage leisure engagement and communication. These two studies extended research efforts aimed at assessing basic technology-aided programs to provide such support. Specifically, Study I assessed a program for promoting independent stimulation choice in four post-coma persons who combined motor and speech disabilities with disorders of consciousness (i.e., were rated between the minimally conscious state and the emergence from such state). Study II assessed a program for promoting independent television operation and basic communication in three post-coma participants who, contrary to those involved in Study I, did not have disorders of consciousness (i.e., had emerged from a minimally conscious state). The results of the studies were largely positive with substantial levels of independent stimulation choice and access for the participants of Study I and independent television operation and communication for the participants of Study II. The results were analyzed in relation to previous data in the area and in terms of their implications for daily contexts dealing with these persons. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Technology-aided programs Minimally conscious state (MCS) Emergence from MCS Leisure engagement Communication
* Corresponding author at: Department of Neuroscience and Sense Organs, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. Tel.: +39 0805521410. E-mail address: [email protected] (G.E. Lancioni). http://dx.doi.org/10.1016/j.ridd.2014.12.015 0891-4222/ß 2014 Elsevier Ltd. All rights reserved.
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1. Introduction Post-coma persons affected by extensive motor impairment and lack of speech, with or without disorders of consciousness, frequently fail to manage leisure engagement (i.e., occupation and regulation of their stimulation input) and interaction/communication with their context (Bruno, Vanhaudenhuyse, Thibaut, Moonen, & Laureys, 2011; De Jong, 2013; Eifert, Maurer-Karattup, & Schorl, 2013; Elliott & Walker, 2005; Giacino, 1996; Giacino, Fins, Machado, & Schiff, 2012; Katz, Polyak, Coughlan, Nichols, & Roche, 2009; Lancioni et al., 2010; Nakase-Richardson, Yablon, Sherer, Nick, & Evans, 2009). Given the severity of their situation and the importance of helping them achieve self-managed leisure engagement and basic communication, growing emphasis has been placed on the need to develop technology-aided programs for assisting them in these skill areas (Conneeley, 2012; Frankoff & Hatfield, 2011; Lancioni et al., 2012; Lancioni, Bosco, et al., 2014; McGilton et al., 2011; Mu¨ller-Patz, Pokorny, Klobassa, & Horki, 2013; Naci et al., 2012; Scherer, 2012; Seel et al., 2013; Wallace & Bradshaw, 2011). During the last few years, a number of technology-aided programs have been evaluated. For example, Lancioni, Singh, O’Reilly, Sigafoos, Alberti, et al. (2011) assessed a program to enable three post-coma adults with multiple disabilities including pervasive motor impairment, lack of speech, and a minimally conscious state (MCS) to access environmental stimuli independently. In practice, the participants could access 10–15 s of preferred stimulation each time they activated a microswitch device via a full eyelid closure, a small change of fingers/hand position, and a protracted eyelid closure, respectively. The microswitches were a camera device, a touch pad, and an optic sensor. All three participants showed clear response increases (i.e., strengthening self-management of stimulation input) during the application of the program. Lancioni et al. (2012) set up a program to enable three post-coma adults with motor impairment and lack of speech who were emerging from a MCS to choose among various stimulation events. A computer system presented them 5-s samples of the stimuli available (i.e., one at a time). If they activated a pressure microswitch placed into the palm of their hands within the 6-s interval after the sample, the computer ensured the occurrence of the matching stimulus event (song, video or caregiver procedure) for 20–25 s. If they activated the microswitch shortly after the end of one of such events, a repetition or extension of the event occurred. If they did not activate their microswitch after a sample or the end of a stimulus event, the computer entered a brief pause and then presented the next sample available in the programmed sequence. Data showed that the three participants had high frequencies of choice responses in relation to stimuli considered preferred for them. Lancioni, Singh, et al. (2014) developed a program to enable two post-coma adults with motor impairment and lack of speech who had no disorders of consciousness to switch on music and videos, make requests to the caregiver, and send text messages to family members and friends. The participants were in front of a computer screen that showed pictorial images of the four options available. These options were automatically scanned (lit) and the participants could choose any of them by activating a microswitch (a touch/pressure device fixed inside their hands) when it was lit. Choice of one of the first three options caused the appearance of a new screen with six new images related to the option chosen (e.g., six singers/songs). Choice of one of those images led the computer to play the corresponding song or video or to verbalize the corresponding request so that the caregiver could satisfy it. If the messaging option was selected, the computer guided the participants to choose the person to whom the message should be sent, and the topic and type of message to send from a pool of available messages. Results were highly encouraging with both participants managing the leisure and communication options successfully. Although the results of the aforementioned studies and other studies in the area appear quite encouraging, the number of participants involved in the research is relatively small (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, et al., 2011; Lancioni, O’Reilly, et al., 2013; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, et al., 2013; Lancioni, Bosco, et al. 2014). Given this situation, new research seems necessary to (a) extend the number of participants involved and add new evidence and (b) develop adaptations of the programs available to meet the needs of persons with different characteristics and interests (Barlow, Nock, & Hersen, 2009; Kennedy, 2005; Lancioni, Bosco, et al., 2014; McNaughton & Light, 2013; Posatskiy & Chau, 2012). These two studies pursued the aforementioned goals. Study I extended the evaluation of an existing technology-aided program for stimulus choice (i.e., Lancioni et al., 2012) with four new post-coma adults who were apparently in the process of emerging from a MCS and were affected by multiple disabilities. Study II assessed a technology-aided program, which was specifically arranged to enable three post-coma persons with multiple disabilities, but no consciousness disorders, to operate a special television device and make requests or statements. 2. Study I 2.1. Method 2.1.1. Participants The four post-coma participants (Janine, Thomas, Margaret, and Richard) were in rehabilitation or care centers and were diagnosed as borderline between the MCS and the emergence from such state. In fact, their performance on the communication subscale of the Coma Recovery Scale-Revised (CRS-R; Kalmar & Giacino, 2005) was clearly exceeding the requirements for a score of 1 (i.e., MCS) but remained somewhat short of the requirements for a score of 2 (i.e., Emergence
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from a MCS). Their scores on the visual and auditory subscales were 2 or 3. Their scores on the alertness and motor subscales were 2. Their scores on the oral/motor subscale were 2 except for Richard who had 1. They presented with pervasive motor impairment, lack of speech, and absence of any practical/functional skills, following brain injury and coma. Janine was 31 years old and had suffered cardiac arrest with subsequent anoxic encephalopathy about 4 years prior to this study. Her coma lasted about 4 weeks. Thomas was 81 years old and had incurred a work accident with right fronto-temporal hemorrhage and consequent hematoma surgically evacuated about 10 months prior to this study. His coma lasted about 3 weeks. Margaret was 39 years old and had suffered a severe fall causing occipital subdural hematoma and diffuse axonal injury on cerebellar and left temporo-parietal regions about 16 months prior to this study. Her coma lasted about 2 weeks. Richard was 63 years old and had suffered left capsular-thalamic hemorrhage with subsequent edema and extensive frontotemporal ischemic lesion about 18 months prior to this study. His coma lasted about 3 weeks. Reports from staff and families and direct observations indicated that the participants enjoyed videos with music/songs, films and/or sport events, and family members interacting with (talking to) them (Lancioni, Bosco, et al., 2014). It was therefore assumed that they would be quite interested in (a) accessing (choosing among) those stimulus events and possibly (b) participating in this study, which provided them with the tools to deal with those stimuli successfully. Their families had signed a consent form for this study, which had been approved by a scientific and ethics committee. 2.1.2. Position, stimulus events, and sessions The participants were in bed or in a wheelchair during the sessions. Six or eight sets of 15 stimulus events were used, one set per session in a rotation fashion. Each set involved (a) 12 videos with music and song scenes or family members talking to them, and (b) 3 videos with instruments producing distorted/blurred sounds. Music and songs and family members talking to them were considered preferred events (see participants). Distorted/blurred sounds were considered non-preferred events and were interspersed with the others as a check on the participants’ choice purposefulness. Purposefulness was inferred if they showed high levels of responding to preferred events and general avoidance of the non-preferred events (Lancioni, Singh, O’Reilly, Sigafoos, Oliva, et al., 2013; Lancioni, Bosco, et al., 2014). 2.1.3. Technology, responses, and data recording The technology involved (a) a computer system with screen and sound amplifier that automatically presented the stimulus events available in the session and (b) a microswitch that the participant used to choose among those events. The microswitch available for Janine, Margaret, and Richard was an optic sensor involving an infrared light-emitting diode and a mini infrared light-detection unit (Lancioni, Sigafoos, O’Reilly, & Singh, 2013). For Janine, the microswitch was fixed on the face (i.e., pointing to the right side of her mouth) and was combined with a mini black sticker at the corner of the mouth. The microswitch was activated by a smile (mouth widening) response bringing the sticker under the sensor. For Margaret and Richard, the microswitch was fixed on the right cheekbone and was combined with a mini paper sticker attached to the corresponding eyelid (Lancioni, Sigafoos, et al., 2013). The microswitch was activated by prolonged eyelid closure (i.e., longer than 0.8 s). The microswitch available for Thomas was a touch/pressure membrane attached to his right thumb. The microswitch was activated when Thomas moved the thumb against the index finger. The computer system presented a 5-s sample of each of the 15 stimulus events available in the session. During the baseline and the first 10–15 sessions of the intervention phase, the sample was accompanied by an attention-calling verbal expression such as ‘‘Want it?’’ or ‘‘Like it?’’ The expression was then made less audible and finally eliminated. During baseline, no consequences were available for the participants’ responses (i.e., microswitch activations). During the intervention, the following conditions applied. If a response (microswitch activation) occurred within the 6 s that followed a stimulus sample, the system presented the matching stimulus event for 20 s. If a response occurred within 6 s from the end of a 20-s stimulus presentation, the system provided an additional 20 s of the same stimulus event. Absence of responding within 6 s from the end of a sample or a 20-s stimulus presentation led the system to pause for about 10 s and then present the next sample of the sequence. One to three sessions per day took place. A session lasted until all stimulus samples had been presented. The samples (i.e., stimulus events) chosen and the 20-s stimulus presentations occurred per session were automatically recorded via the computer system. 2.1.4. Experimental conditions The study was carried out according to a non-concurrent multiple baseline design across participants (Barlow et al., 2009). Janine and Thomas had two baseline sessions while Margaret and Richard had four baseline sessions. The intervention phase included 98, 119, 109, and 91 sessions for the four participants, respectively. 2.1.4.1. Baseline. The participants were provided with the microswitch for the smile, eyelid or thumb response and the computer system. The system presented the samples of the stimulus events available and recorded the participants’ responses, as described above. The responses were never followed by consequences (i.e., 20-s stimulus presentations). 2.1.4.2. Intervention. During the intervention phase, the participants had the microswitch and the computer system, which worked as described in Section 2.1.3. The 91-119 intervention sessions were preceded by six or seven practice sessions, during which the participants were led to respond to samples of positive stimulus events and after the end of 20-s stimulus presentations (i.e., to experience the consequences of their responding).
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2.2. Results
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The four panels of Fig. 1 summarize the data for Janine, Thomas, Margaret, and Richard, respectively. The bars and black squares indicate mean frequencies of preferred stimulus events chosen per session out of the 12 available (i.e., videos with music/songs, films and/or sport events, and family members talking) and mean frequencies of 20-s stimulus presentations occurred per session, respectively, over blocks of sessions. The number of sessions included in the blocks (i.e., bar-square combinations) is indicated by the numeral above them. During the baseline phase, the mean frequencies of positive stimulus events chosen were between two (Margaret) and above five (Richard). Choices did not have consequences, thus the mean frequencies of 20-s stimulus presentations were zero (see Fig. 1). During the intervention phase, the participants’ mean frequencies of preferred stimulus events chosen per session were between near eight (Janine) and near nine (Thomas and Margaret). The mean frequencies of 20-s stimulus presentations per session were between about 25 (Janine) and well over 45 (Richard). Actually, the participants obtained several repetitions of various (preferred) stimulus events by producing a response soon after their presentation ended. The mean frequencies of non-preferred stimulus events chosen were close to zero during the baseline and intervention phases, suggesting purposeful choice behavior.
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Blocks of Sessions Fig. 1. The four panels summarize the data for Janine, Thomas, Margaret, and Richard, respectively. The bars and black squares indicate mean frequencies of preferred stimulus events chosen per session out of the 12 available (i.e., videos with music/songs, films and/or sport events, and family members talking) and mean frequencies of 20-s stimulus presentations occurred per session, respectively, over blocks of sessions. The number of sessions included in the blocks is indicated by the numeral above them. The frequency values on the right ordinates of the graphs differ across participants.
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3. Study II 3.1. Method 3.1.1. Participants The three post-coma participants (Juan, Steve, and Victor) were in a rehabilitation center and were diagnosed as emerged from the MCS. They had a score of 2 on the communication subscale of the CRS-R and were rated between the sixth and seventh level of the Rancho Levels of Cognitive Functioning (Hagen, 1998). They understood simple verbal questions and could respond to them appropriately with head or eye movements. All three presented with extensive motor impairment, lack of speech and absence of any practical/functional skills. Juan was 71 years old and had been involved in a road accident with diffuse axonal injury on right fronto-temporal and left parietal regions and splenium of corpus callosum about 4 months prior to this study. Steve was 80 years old and had suffered a severe fall causing a left fronto-temporo-parietal subdural hematoma, which was surgically evacuated about 3 months prior to this study. Victor was 66 years old and had suffered right thalamic and intra ventricular hemorrhage with subsequent cerebral edema and extensive fronto-parietotemporal ischemic lesions about 3 months prior to this study. The participants’ coma conditions lasted about 2 weeks. Reports from staff and families and direct observations indicated that the participants enjoyed watching television but were totally dependent on others to operate a television device. They were also known to have serious problems to express their needs or their feelings and to make requests. It was therefore assumed that they would be quite interested in entering a program providing them with the technology to deal with those two issues. Indeed, they confirmed such an interest (i.e., with eye and head responses) when the program was illustrated to them. Their families had signed a consent form for this study, which had been approved by a scientific and ethics committee. 3.1.2. Position, technology, and response The participants were in bed or in a wheelchair during the sessions. They were provided with a computer system with screen and sound amplifier, and a microswitch. The computer system served to (a) show pictorial images of the two program options available for choice (i.e., television and communication) on its screen, (b) verbally identify and scan (light) one of the images at a time for 4 s, and (c) respond to microswitch activations operated by the participant. Activating the microswitch when the system was on the scanning mode opened the option being scanned at the time (see below). The microswitch used for each participant was a touch sensor fixed inside his right or left hand. Minimal hand closure movements were sufficient for microswitch activation. 3.1.2.1. Television. If the participant opened the television option, the computer system tuned into the first of six preselected television channels, showing that channel’s programs on its screen. This was possible through a commercial software package (USB TDT AVerTV Volar Green HD A835-ECO plus mini antenna; Lancioni, Ferlisi, et al., 2014). Any new microswitch activation turned on the next channel of the sequence. Microswitch activation in connection with the last (i.e., sixth) channel of the sequence switched the television off and restored the original screen with the two program options. 3.1.2.2. Communication. If the participants opened the communication option, the computer screen showed three boxes, which were scanned (lit) in sequence and identified verbally. Their verbal labels were: ‘‘I need’’, ‘‘I feel’’, and ‘‘I would like to ask’’, respectively. Microswitch activation in relation to the ‘‘I need’’ box opened a new screen with five or six words/phrases indicating needs, such as ‘‘pulled up’’, ‘‘drink’’, ‘‘washing’’, and ‘‘massage’’. The words/phrases were scanned and read by the computer system automatically. The selection of one of them by microswitch activation led the computer to verbalize the related sentence aloud (e.g., ‘‘I need to be pulled up’’ and ‘‘I need to drink’’) so that the caregiver could respond appropriately. Microswitch activation in relation to the ‘‘I feel’’ or ‘‘I would like to ask’’ boxes had similar consequences. That is, the participant was faced with a new screen with five or six different words/phrases concerning either feelings or requests, which were scanned and read automatically. The selection of a feeling phrase or a request phrase led the computer to verbalize the related sentence aloud. Examples of those sentences were ‘‘I am happy’’, ‘‘I am angry’’, ‘‘I am tired’’, ‘‘How is the weather?’’, ‘‘Is my daughter (NAME) coming today?’’, and ‘‘What are the day’s news?’’ Caregiver responses to the feeling sentences could vary from excited verbal comments in relation to ‘‘I am happy’’ to little interactions to provide support and make environmental changes in relation to sentences such as ‘‘I am sad’’ or ‘‘I am angry’’. The responses to request sentences could vary from simple verbal communications (e.g., describing the weather) to the reading of brief sections of the newspaper (e.g., summarizing the day’s news). 3.1.3. Experimental conditions and data recording The study was carried out according to a non-concurrent multiple baseline design across participants (Barlow et al., 2009). Juan had two baseline sessions, while Steve and Victor had four baseline sessions. The intervention phase included 108, 51, and 102 sessions for the three participants, respectively. Sessions lasted 10 min (or until a communication started before the 10-min limit had ended) and occurred two to four times a day. Data collection involved the time spent watching television, the number of channels watched for more than 20 s (i.e., longer than the time required for screening and transition), and the number of communication sentences activated. Interrater agreement was assessed in about 25% of the sessions, in which two research assistants were involved in recording the measures. Percentages of agreement on the single
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measures (computed by dividing the number of sessions in which the research assistants reported television watching times differing less than 40 s or identical frequencies of channels or sentences by the total number of reliability sessions and multiplying by 100) exceeded 90 for all participants. 3.1.3.1. Baseline. The participants were provided with a computer showing the television and communication options on its screen, and a mouse to activate those options. Lack of responding after about 3-4 min led the research assistant to activate the television option and progress through several channels so as to minimize possible frustration (Lancioni, Singh, et al., 2014). 3.1.3.2. Intervention. During the intervention sessions, the full technology package (i.e., including the microswitch) was available and worked as described within Section 3.1.2. The intervention sessions were preceded by six or seven practice sessions, during which the research assistant led the participants to activate and experience each of the choice options, using the response sequences described above. 3.2. Results The three panels of Fig. 2 summarize the data for Juan, Steve, and Victor, respectively. The bars indicate the mean number of minutes the participants watched television per session over a block of sessions. The black squares and empty circles represent the mean number of channels watched for more than 20 s, and the mean number of communication sentences activated per session, respectively, over the same blocks of sessions. The number of sessions included in the blocks is indicated by the numeral above the bars. During the baseline sessions, the participants did not activate any of the options available (i.e., did not use the mouse). During the intervention phase, all three participants were successful in activating each of the options available. Their mean [(Fig._2)TD$IG]
10 8
Means for Watching Time, Channels, and Sentences
6
BASELINE
INTERVENTION
12
14
14
14
14
JUAN
14 14
12
4 2
2
0
STEVE 10
6
6
6
6 6
8
7
7
7
6 4 2
2
2
0
VICTOR 12
10
12
12
4
5
12
12
14
6
7
8
14
14
9
10
8 6 4 2
2
2
1
2
0
3
Blocks of Sessions Fig. 2. The three panels summarize the data for Juan, Steve, and Victor, respectively. The bars indicate the mean number of minutes the participants watched television per session over a block of sessions. The black squares and empty circles represent the mean number of channels watched for more than 20 s, and the mean number of communication sentences activated per session, respectively, over the same blocks of sessions. The number of sessions included in the blocks is indicated by the numeral above the bars.
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television watching times varied from nearly 8.5 min (Victor) to about 7.5 min (Steve) per session. The mean numbers of channels watched for more than 20 s varied between about four and a half (Steve) and three (Juan). The mean numbers of communication sentences activated were about one per session for Juan and Victor and over two per session for Steve. 4. General discussion The results of Study I add new evidence in support of the beneficial impact of technology-aided choice programs for postcoma persons in the process of emerging from a MCS (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, et al., 2011; Lancioni, Bosco, et al., 2014). The results of Study II show the potential of a novel version of leisure and communication program for post-coma persons with no disorders of consciousness and with clear interest in their surroundings (Lancioni, Bosco, et al., 2014). In light of the results of these two studies and of previous studies in the area, a number of considerations can be put forward. Study I confirmed that persons emerging from a MCS with pervasive motor impairment and lack of speech can be realistically helped to choose among multiple leisure stimuli through a program that presents such stimuli automatically. Their choice performance seemed largely purposeful. In fact, they chose most of the stimuli considered to be positive and for many of the stimuli they sought multiple 20-s presentations (i.e., by responding as soon as any such presentation ended). By contrast, they fairly consistently abstained from responding to the stimuli considered non-preferred. Providing these persons the opportunity to have an active role (i.e., to exercise self-determination) may serve to promote their alertness and enjoyment, and possibly improve their status and mood (Fischer, Langner, Birbaumer, & Brocke, 2008; Lancioni, Bosco, et al., 2014; Man, Yip, Ko, Kwok, & Tsang, 2010; McDougall, Evans, & Baldwin, 2010; Munde, Vlaskamp, Ruijssenaars, & Nakken, 2009; Sunderland, Catalano, & Kendall, 2009; Taylor, Aird, Tate, & Lammi, 2007; Whyte & Nakase-Richarson, 2013). Within the same program arrangement, they can also decide their engagement time (length of the session) based on the level of their personal involvement/interest and their conditions (Foley & Ferri, 2012). Better conditions and/or higher levels of interest would lead them to produce higher levels of responses (choices) with consequent extension of the engagement time (i.e., as shown by Margaret and Richard) (Catania, 2012; Kazdin, 2001; Pierce & Cheney, 2008). The results of Study II show that variations of the early leisure and communication programs can be arranged and successfully employed. The program components used in Study II are fairly simple and relatively narrow in scope compared to those, which were previously used (i.e., combinations of music, songs, requests, messaging and telephone options). Even so, allowing the persons to engage in one of the most popular leisure occupation (i.e., watching television) in a totally independent manner, with the possibility of changing channels and switching the device off, can be considered highly valuable in most daily contexts. Obviously, the occupation option needs to be combined with (supplemented by) an effective communication channel. Effective communication satisfies the basic requirements for functional interaction and can be considered critically important for the participants as well as their caregivers (Baxter, Enderby, Evans, & Judge, 2012; Lancioni, Singh, O’Reilly, Sigafoos, Oliva, et al., 2013). In this study, the communication channel allowed the participants to request for stimuli/events that they needed and information that they desired as well as to express their feelings in general. The participants seemed to use such channel with a certain level of regularity (i.e., about once or twice per session in the average). This channel could be easily extended with the addition of messaging and telephone options whenever the participants and caregivers would find those options relevant (Lancioni, Bosco, et al., 2014; Lancioni, Singh, et al., 2014). In essence, the two components of the program used in Study II could be combined with any of the components of previous programs for post-coma persons with relatively high levels of functioning without any technical difficulties. The technology packages required for the two programs involve a computer system with specific software and a microswitch. The use of such packages may be considered rather straightforward for participants and caregivers. Their cost of about US$2000, moreover, may be deemed as affordable for most care and rehabilitation contexts (Dahlin & Ryde´n, 2011; Hubbard Winkler et al., 2010; Wallace, 2011). New efforts may be directed at the acquisition of new microswitches to extend the variety of tools available for persons with pervasive motor disabilities and difficulties to tolerate devices touching their face/body (e.g., optic sensors for eyelid responses) (Bauer & Elsaesser, 2012; Foley & Ferri, 2012; Gibson, Carnevale, & King, 2012; Lancioni, Sigafoos, et al., 2013; Lancioni, Bosco, et al., 2014; Na¨slund & Gardelli, 2013; Posatskiy & Chau, 2012; Seel et al., 2013; Shih, Wang, Chang, & Kung, 2012). Other research efforts may be directed at investigating various combinations of options that could maximize the suitability of the programs to different types of participants (Fritz, Peters, Merlo, & Donley, 2013; Lancioni, Singh, et al., 2014; Taheri et al., 2014). In conclusion, Study I adds new evidence about the possibility of post-coma persons in the process of emerging from a MCS to manage a choice program while Study II shows the effectiveness of a new and simple program package (television and basic communication) for post-coma persons emerged from a MCS. Taken together, the results of the two studies stress the relevance of technology-aided programs for enhancing the performance level (recovery process) of post-coma persons with multiple disabilities. New research in the area could involve efforts to (a) determine the generality of the present data and the adaptability of the reported programs (i.e., with possibly new technology solutions) to different situations and participants (Barlow et al., 2009; De Joode, Van Boxtel, Verhey, & Van Heugten, 2012; Kennedy, 2005), (b) examine the participants’ satisfaction with the programs (i.e., possible indices of happiness during the sessions and/or desire to start the sessions), and (c) assess families and staff’s opinions about the programs and suggestions for improving them (Callahan, Henson, & Cowan, 2008; Lamontagne, Routhier, & Auger, 2013; Lancioni et al., 2006; Lenker, Harris, Taugher, & Smith, 2013; Lindstedt & Umb-Carlsson, 2013; Pouliquen et al., 2013; Ripat & Woodgate, 2011).
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