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NeuroRehabilitation 34 (2014) 749–758 DOI:10.3233/NRE-141075 IOS Press
Post-coma persons with multiple disabilities use assistive technology for their leisure engagement and communication Giulio E. Lancionia,∗ , Nirbhay N. Singhb , Mark F. O’Reillyc , Jeff Sigafoosd , Doretta Olivae , Francesca Buonocuntof , Valentina Saccof , Fiora D’Amicog , Jorge Navarrof , Crocifissa Lanzilottif , Marina De Tommasoa and Marisa Megnaa a Department
of Neuroscience and Sense Organs, University of Bari, Bari, Italy College of Georgia, Georgia Regents University, Augusta, GA, USA c University of Texas at Austin, TX, USA d Victoria University of Wellington, Wellington, New Zealand e Lega F. D’Oro Research Center, Osimo, Italy f S. Raffaele Rehabilitation Center, Ceglie Messapica, Italy g S. Raffaele Medical Care Center, Alberobello, Italy b Medical
Abstract. BACKGROUND: Interventions for post-coma persons, who have emerged from a minimally conscious state but present with extensive neuro-motor impairment and lack of or minimal verbal skills, need to promote occupation and communication through the use of assistive technology. OBJIECTIVE: These two studies were aimed at assessing two technology-aided programs to promote leisure engagement and communication for three post-coma participants with multiple disabilities. METHODS: Study I assessed a program to allow a woman and a man with extensive neuro-motor impairment and lack of speech to switch on music and videos, make requests to caregivers, and send messages to (communicate with) relevant partners and receive messages from those partners. Study II assessed a program to allow a post-coma woman with extensive motor impairment and reduced verbal behavior to activate music, videos and requests, send and receive messages, and make telephone calls. RESULTS: Data showed that both programs were successful. The participants of Study I managed leisure engagement, requests, as well as text messaging. The participant of Study II showed consistent leisure engagement, text messaging, and telephone calls. CONCLUSIONS: Assistive technology can be profitably used to provide post-coma persons with multiple disabilities relevant leisure and communication opportunities. Keywords: Leisure engagement, communication, post-coma persons with consciousness, multiple disabilities, assistive technology
1. Introduction The process and level of recovery shown by people with a history of coma can vary widely (Bruno, ∗ Address for correspondence: Giulio E. Lancioni, Department of Neuroscience and Sense Organs, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. Tel.: +39 080 552 1410; E-mail: giulio. [email protected].
Vanhaudenhuyse, Thibaut, Moonen, & Laureys, 2011; Demertzi, Soddu, & Laureys, 2013; Estraneo et al., 2013; Lancioni, Singh, O’Reilly, Sigafoos, Olivetti Belardinelli et al., 2012). Some people progress only marginally and reach a vegetative state, with negligible rehabilitation opportunities (Giacino & Kalmar, 2005; Lotze, Schertel, Birbaumer, & Kotchoubey, 2011; Von Wild, Laureys, Gerstenbrand, Dolce, & Onose, 2012).
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Other people reacquire their consciousness, communication and motor functions and return, with some help, to the activities and social contacts that they had before the brain injury and coma (Geurtsen, Van Heugten, Meijer, Martina, & Geurts, 2011; Katz, Polyak, Coughlan, Nichols, & Roche, 2009; Laureys & Schiff, 2012). A third group of people show levels of recovery falling somewhere between the aforementioned two extremes (Bekinschtein et al., 2005; Laureys & Schiff, 2012; No´e et al., 2012; Pistoia, Mura, Govoni, Fini, & Sar`a, 2010). This last group includes, among others, persons who have emerged from a minimally conscious state but present with extensive neuro-motor impairment and lack of or minimal verbal skills that reduce their opportunities of engagement and communication (Cavinato et al., 2009; Katz et al., 2009; Lancioni, O’Reilly, Singh, Buonocunto et al., 2011; Leisman & Kock, 2009; No´e et al., 2012; Rispoli, Machalicek, & Lang, 2010; Wallace & Bradshaw, 2011). Intervention programs for these persons would need to (a) support/facilitate their occupation and communication and (b) resort to the use of assistive technology solutions to bypass or reduce the negative impact of their disabilities (Bauer, Elsaesser, ¨ & Arthanat, 2011; Borg, Larson, & Ostergren, 2011; Chantry & Dunford, 2010; De Joode, Van Boxtel, Verhey, & Van Heugten, 2012; Lancioni, O’Reilly, Singh, Sigafoos, Buonocunto et al., 2011; Lancioni, Singh, O’Reilly, Sigafoos, Colonna et al., 2012; Lancioni, Singh, O’Reilly, Sigafoos, Ricci et al., 2012). A number of studies have been recently conducted with these persons, which are in line with the aforementioned goals. For example, Lancioni, Singh et al. (2011) used computer and microswitch technology to enable a post-coma woman with multiple disabilities to engage in leisure activities such as watching film segments or listening to songs on her own. Lancioni, O’Reilly, Singh, Buonocunto et al. (2011) used a computer provided with specific software, a global system for mobile communication modem, microswitches, and pre-recorded lists of messages to enable two post-coma adults with multiple disabilities to send messages to (communicate with) relevant partners and also receive messages from those partners. Lancioni, O’Reilly et al. (2013) integrated the two sets of technologies used in the aforementioned studies to enable two post-coma adults with multiple disabilities to combine leisure engagement (operating music and videos), requests to caregivers, and use of messages for communication with relevant partners. Finally, Lancioni, Singh et al. (2013) reported a further extension of the technology package to enable two post-coma adults with multiple
disabilities to combine leisure engagement, requests to caregivers, and use of messages with the activation of telephone calls. The positive outcomes of the aforementioned studies (a) constitute very encouraging evidence as to the possibility of widening the range of rehabilitation opportunities for these persons, and (b) underline the need of new research in the area to determine the reliability and practicality of the evidence available (Kennedy, 2005; Lancioni et al., 2010). The present two studies were aimed at extending the research carried out by Lancioni, O’Reilly et al. (2013) and by Lancioni, Singh et al. (2013) with new participants. The first of the two studies involved a woman and a man who had emerged from a minimally conscious state, but presented with pervasive neuro-motor impairment and lack of speech. The second study involved a woman who, contrary to the participants of the first study, possessed some speech.
2. Study I 2.1. Method 2.1.1. Participants The participants (Francine and Paul) were 63 and 68 years old, respectively. Francine had suffered rupture of intracranial aneurysm of the left posterior cerebral artery with subsequent extended subarachnoid hemorrhage and coma, about 4 months prior to the beginning of this study. Angiographic arterial embolization had been carried out and a ventricular shunt had been applied. A post-embolization brain CT scan had shown an extended left fronto-temporo-parietal ischemic area. The initial coma condition was replaced by a vegetative state, which evolved into a minimally conscious state after about 1 month. Her condition continued to improve and, by the start of this study, she had fully emerged from the minimally conscious state. She presented with spastic right hemiplegia and minimal control of head and trunk, right homonymous hemianopsia, motor aphasia and severe ideomotor apraxia. She could not manipulate objects and could not access preferred stimulus events. She did not have speech abilities, but responded reliably to autobiographical questions as well as to questions concerning her needs and feelings through head movements that were interpreted as “yes” and “no”. She enjoyed the company of family members and friends, followed their conversations, and responded to them reliably (i.e., through
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head movements). She used a nasogastric tube for nutrition and was also fitted with a tracheostomy tube and a urinary catheter. Her general performance seemed to amply fulfill the requirements of the sixth level of the Rancho Los Amigos – Revised Levels of Cognitive Functioning (see Hagen, 1998). Paul had been involved in a work accident causing severe traumatic brain injury and subsequent coma, about 6 months prior to the beginning of this study. A brain CT scan had shown frontal and right parietal hematoma and right hemisphere subarachnoid hemorrhage. No neurosurgery was carried out. Magnetic resonance imaging had shown a diffuse axonal injury with multiple frontal and splenium of the corpus callosum lesions. His coma lasted about 3 weeks and was replaced by a vegetative state condition, which shortly thereafter changed into a minimally conscious state. He had emerged from this latter state, with reacquisition of consciousness and had the ability to follow simple conversations about familiar daily events and persons. He had no speech, but could respond to questions and ongoing conversations with eye blinks or mouth movements. He presented with severe tetraparesis prevalent on the left side, multiple tendon-muscle retractions and minimal control of head and trunk. He used a gastrostomy tube for nutrition and was also fitted with a tracheostomy tube and a urinary catheter. He had received the same ranking as Francine on the Rancho Levels of Cognitive Functioning (see Hagen, 1998). Both participants enjoyed popular music (instrumental pieces and songs) and videos concerning nature, family events, popular movies as well as sport. They were known to like (or need) caregiver’s procedures, such as face washing, arm massaging, and position changing, and relished contact and communication with family members, relatives, and friends. They were also reported to be interested in listening to voice messages or phone calls from those people and plausibly in sending messages to them. They and their families showed interest in a technology-aided program that allowed access to leisure (music and video) activities, request options, and communication opportunities through text messages. Their families had also signed a formal consent for their participation in this study, which had been approved by a scientific and ethics committee. 2.1.2. Setting, sessions, and data collection The study was carried out in the participants’ rooms at the medical rehabilitation center in which they were treated. Baseline sessions were restricted to 10 min, as no independent responses were expected. The interven-
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tion sessions lasted 15 min (or until the participants had completed any activity started before the 15-min limit; see below). Sessions focused on leisure engagement and requests to caregivers as well as on text messaging. For recreation engagement and requests, recording concerned the frequencies of videos and songs activated and of requests made. For text messaging, recording concerned the frequencies of messages sent out and listened to. Interrater reliability was assessed in about 25% of the sessions, in which two research assistants recorded the measures simultaneously. Mean percentages of agreement on the single measures (computed by dividing the agreements by the agreements plus disagreements and multiplying by 100) exceeded 90. 2.1.3. Assistive technology and response The assistive technology available for the two participants involved a computer/control system with screen and sound amplifier, a mobile communication modem, a microswitch (i.e., a touch-pressure device) and relative interface connecting it to the computer, a headset, and specific software. The microswitch was a thin box-like device fixed inside the participant’s left hand (Francine) or right hand (Paul), included a touch and a pressure membrane, and could be activated by a small hand-closure response suitable to both participants (see Lancioni, Sigafoos, O’Reilly, & Singh, 2012). The software (written with Borland Delphi Developer Studio, from Inprise Corporation, 2005) ensured that the computer system would (a) show pictorial images of the options available for choice (i.e., songs, videos, requests, and text messages) on its screen, (b) verbally identify and scan (illuminate) one of the images at a time for 5 s, and (c) respond to microswitch activations. 2.1.4. Song, video, and request options If the participants chose one of the first three options, that is, songs, videos, or requests (i.e., activated the microswitch while the image of such an option was being scanned), a new set of six pictorial images related to the option chosen would appear on the computer screen. Each of the images was automatically scanned for 5 s. If the participants selected one of the song or video options, the computer system played such a song or showed that video for 2–3 min. The participants could interrupt it at any time by activating the microswitch. If the participants selected one of the request options, the computer system verbalized such a request so that the caregivers could respond to it. The request options included, among others, a change of position, arms/legs massaging, and face washing. The
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system automatically reset the original screen with the four choice options. 2.1.5. Text messaging option If the participants chose text messaging, the computer system verbally acknowledged that they could send messages to family members, relatives, and friends. Four to six persons per category were available. The system presented the categories individually at intervals of 5 s. When the participant selected a category (i.e., via microswitch activation within 5 s from the verbal identification of it), the system verbally presented the persons/partners included in that category, one at a time. Selection of a partner (i.e., via microswitch activation) led the system to verbalize the message topics available. The participant could choose among four or five message topics, such as telling the partner about his or her condition, asking for news, and sending love/greetings. The system verbalized each message topic individually (Lancioni, Singh et al., 2013). As soon as the participant selected a message topic (i.e., via microswitch activation), the system started to verbalize the four to seven specific messages available for that topic. Depending on the topic, the messages could consist of phrases such as: “I am doing better today”, “how is your work going?”, “how are the children doing in school?”, “when can you visit me?”, and “I love you and miss you”. The system verbalized the messages individually. When the participant selected a message (i.e., via microswitch activation), the system sent that 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 or reading a message, the system reset the original screen with the four choice options. 2.1.6. Experimental conditions For each participant, the study was carried out according to an ABAB design, in which the A and B represented baseline and intervention phases, respectively (Barlow, Nock, & Hersen, 2009). 2.1.6.1. Baseline phases. Each baseline phase included two 10-min sessions, in which the participants were provided with a computer showing song, video, and request options on its screen, a mouse to activate those options, and a mobile telephone for text messaging. Lack of responding after 3–4 min led the research assistant to activate one of the aforementioned options or send a message for the participants. 2.1.6.2. Intervention phases. The intervention phases included 48 and 75 sessions for Francine, and 43 and 71 sessions for Paul. During these sessions, the full technology package (i.e., including the microswitch) was available and worked as described above. The first intervention phase was preceded by seven practice sessions in which the research assistant helped the participants activate and experience each of the choice options by performing the response sequences required. 2.2. Results Figures 1 and 2 summarize the data for Francine and Paul, respectively. The bars in their entirety (i.e., full height) represent mean cumulative frequencies of options selected per session over blocks of sessions.
Fig. 1. Francine’s data. The bars represent mean cumulative frequencies of options selected per session over blocks of sessions. The dark gray, white, and light gray components of the bars represent mean frequencies for (a) songs and videos, (b) requests and (c) text messages sent out and received (listened to), respectively. The number of sessions included in each block/bar is indicated by the numeral above it.
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Fig. 2. Paul’s data plotted as in Fig. 1.
The dark gray, white, and light gray components of the bars represent mean frequencies for (a) songs and videos, (b) requests and (c) text messages sent out and received (listened to), respectively. The number of sessions included in each block/bar is indicated by the numeral above it. During the first baseline, the participants did not perform any choice response, as they could not use the mouse or the mobile telephone. During the first intervention phase, both participants gained successful performance and activated each of the choice options available. The mean cumulative frequencies of options selected per session were above five and a half and about four and a half for Francine and Paul, respectively. Choices concerning videos, songs, and requests accounted for less than half of the total for Francine and more than half of the total for Paul. The frequency of requests was rather low for both participants. The data for the second baseline and second intervention phase were identical or similar to those mentioned above.
3. Study II 3.1. Method 3.1.1. Participant The participant (Erin) was 85 years old. She had suffered a right total anterior circulation stroke with subsequent coma, more than 1 year prior to this study. Her brain CT scan showed an extensive right frontotemporo-parietal ischemic lesion with minimal shift of the midline. The recovery from the coma state had been marked by a period of minimally conscious state, from which she had successfully emerged. By the time of the study, she presented with pervasive motor impairment,
which included severe tetraparesis prevalent on the left side and minimal control of head and trunk and left unilateral spatial neglect. She was rated at the seventh level of the Rancho Los Amigos – Revised Levels of Cognitive Functioning (see Hagen, 1998). She enjoyed listening to music and watching brief videos of comic and popular films or of religious and family events. She also enjoyed contact and communication with her son and daughter and their spouses, her grandchildren and friends. Indeed, she was visibly happy when these people visited with her at the medical care center in which she was treated. She also liked to have telephone conversations with them and could show signs of emotions while listening to them talking. She tended to listen more than to talk, as she found talking rather difficult. She and her family agreed to use a technologyaided program that allowed her to choose among leisure (music and video) opportunities, make simple requests to staff, send and receive (listen to) text messages, and make telephone calls. Her family had signed a formal consent for her participation in this study, which had been approved by a scientific and ethics committee. 3.1.2. Setting, sessions, and data collection The study was carried out in Erin’s room at the medical care center in which she was treated. Baseline and intervention sessions were as in Study I. For leisure engagement and requests, recording concerned the frequencies of videos and songs activated and of requests made. For text messaging, recording concerned the frequencies of messages sent out and listened to. For telephone calls, recording concerned the frequencies of calls made. Interrater reliability was assessed in about 25% of the sessions, in which two research assistants recorded the measures simultaneously. Mean
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percentages of agreement on the single measures (computed by dividing the agreements by the agreements plus disagreements and multiplying by 100) exceeded 90.
3.1.6. Experimental conditions The study was carried out according to an ABAB design, in which the A and B represented baseline and intervention phases, respectively (Barlow et al., 2009).
3.1.3. Assistive technology and response The assistive technology used for Erin’s program matched that of Study I with one exception. The choice options shown on the computer screen and available for the participant to choose also included telephone calls (see below).
3.1.6.1. Baseline phases. Each baseline phase included two 10-min sessions. Erin was provided with a computer showing song, video, and request options on its screen, a mouse to activate those options, and a mobile telephone for text messaging and telephone calls (see Study I). Lack of responding after 3–4 min led the research assistant to activate one of the aforementioned options or send a message for Erin, as in Study I.
3.1.4. Song, video, request, and text messaging options Conditions matched those available in Study I, but songs and videos generally lasted about 1.5 min (i.e., this length was considered to be more suitable to Erin’s characteristics). 3.1.5. Telephone call option If Erin chose to make a telephone call, the computer system verbally acknowledged that she could call her son and daughter (as well as their spouses), her grandchildren, and friends (i.e., four or five persons per category). The system verbalized one of those categories at a time, at intervals of 5 s. When Erin selected a category (i.e., by activating the microswitch following its identification), the system verbalized the persons/partners included in that category, one at a time. When Erin selected a partner (i.e., by activating the microswitch following his or her identification), the system placed a call to him or her. After the end of the conversation with a partner the system reset the screen with all the choice options.
3.1.6.2. Intervention phases. The intervention phases included 42 and 70 15-min sessions, respectively. During these sessions, the complete technology package was available. Erin used the microswitch to make option selections (see Study I). The first intervention phase was preceded by six practice sessions in which the research assistant helped Erin activate and experience each of the choice options by performing the response sequences required. 3.2. Results Figure 3 summarizes Erin’s data. The bars in their entirety represent mean cumulative frequencies of options selected per session over blocks of sessions. The dark gray components of the bars represent mean frequencies for songs, videos, and requests together. Requests were collapsed with songs and videos, because they were few. The light gray and black components of the bars represent mean frequencies for
Fig. 3. Erin’s data plotted as in Fig. 1, with the exception that the bars include dark gray, light gray, and black components, which represent mean frequencies for (a) songs, and videos, and requests together, (b) text messages sent out and received (listened to), and (c) telephone calls made, respectively.
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(a) text messages sent out and received (listened to), and (b) telephone calls made, respectively. The number of sessions included in each block is indicated by the numeral above it. During the first baseline, Erin did not perform any choice response, as she could not use the mouse or mobile telephone. During the first intervention phase, Erin gained successful performance. The mean cumulative frequency of options selected per session was about six. Choices concerning videos, songs, and requests accounted for slightly more than half of the total. The mean frequency of text messages sent out and listened to neared two per session. The mean frequency of phone calls made was close to one per session. The performance observed during the second baseline and the second intervention phase was identical or similar to that reported for the first baseline and first intervention phase.
4. General discussion The data of Study I, in line with the results of Lancioni, O’Reilly et al. (2013), indicate that two post-coma participants, who had emerged from a minimally conscious state but suffered from extensive neuro-motor impairment and lack of speech, could successfully manage leisure engagement, requests and text messaging through assistive technology. The data of Study II, in line with the findings of Lancioni, Singh et al. (2013), indicate that the leisure and communication opportunities of a post-coma woman with neuro-motor impairment and limited speech could be extended beyond those of Study I (i.e., with the addition of telephone calls). In light of these data, a number of considerations might be put forward. First, the evidence of the overall effectiveness of the technology-aided programs implemented in the two new studies may be considered quite relevant. In fact, it (a) constitutes a careful demonstration of the possibility of combining leisure and communication opportunities for post-coma persons with multiple disabilities through assistive technology, (b) adds to the preliminary (encouraging but limited) data available in this context, and (c) strengthens the view that it might be possible to help these persons improve their rehabilitation and life perspectives in a reasonable and affordable way (Bauer et al., 2011; Borg et al., 2011; Davies, Mudge, Ameratunga, & Stott, 2010; De Joode et al., 2012; H¨aggstr¨om & Lund, 2008; Lancioni, O’Reilly et al., 2012; Lancioni, Singh, O’Reilly, Sigafoos, Ferlisi et al., 2012).
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Second, the implications of enabling persons with extensive neuro-motor impairment and lack of or limited speech to (a) access a variety of leisure events and (b) manage communication through messaging or messaging and telephone calls (besides the request option) cannot be easily overemphasized (Davies et al., 2010; H¨aggstr¨om & Lund, 2008; Katz et al., 2009; Lancioni, O’Reilly et al., 2012, 2013; Ripat & Woodgate, 2011; Ward, 2012). Direct and independent access to leisure stimuli can provide the participants a sense of pleasure connected to the sensory input as well as satisfaction due to their exercise of self-determination and choice (Heinicke, Carr, Eastridge, Kupfer, & Mozzoni, 2013; Wehman, Gentry, West, & Arango-Lasprilla, 2009). Text messaging to partners (albeit rather unsophisticated given the use of preset messages) may serve as an easy and effective way to (a) establish connection with socially relevant people, (b) prompt them to reply with personal messages, thus generating communication events, and (c) create conditions for rediscovering social-emotional ties and closeness between participants and partners with beneficial effects for both parties (Jumisko, Lexell, & S¨oderberg, 2009; Lancioni, Singh, O’Reilly, Sigafoos, Ferlisi et al., 2012; Man, Yip, Ko, Kwok, & Tsang, 2010; Mortenson et al., 2012; Wolters, Stapert, Brands, & Van Heugten, 2010). The use of telephone calls allows the participant to have direct contact with the partners. Such contact might be important not only for the types of communication/conversation contents exchanged, but also (or even more) for the emotional sharing with the partners (Braine, 2011; Togher, Power, Rietdijk, McDonald, & Tate, 2012). The possibility of activating requests to satisfy desires and/or needs in a rapid manner and without confusions or difficulties seems to underline the programs’ practical value (Beukelman, Fager, Ball, & Dietz, 2008; Casey, 2011; Fried-Oken, Beukelman, & Hux, 2011). The fact that the participants of both studies had low frequencies of requests during the sessions might have two complementary explanations. That is, (a) the participants were attracted by the other (leisure and communication) features of the programs and thus had limited time left for the request option and (b) the range of requests available for such option did not cover events representing high levels of desire or need (Kazdin, 2001; Lancioni, Singh et al., 2011). Third, the participants’ consistent choice responding across sessions might be taken to suggest that the assumptions made above about the relevance and positive values of the programs were largely accurate and that the participants enjoyed the leisure and
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communication opportunities. Participants’ enjoyment is a critical condition, namely, the most important variable in support of their motivation to remain actively engaged with their environment (Scherer, Craddock, & Mackeogh, 2011). Two other variables that determine the viability of a program are its implementation cost in terms of staff and caregivers’ time and its economical affordability (Dahlin & Ryd´en, 2011; Hubbard Winkler et al., 2010; Lancioni, Sigafoos et al., 2012). With regard to the implementation/time cost, the programs reported here were totally viable, as participants were independent in their performance, and staff and caregivers were required to intervene only with regard to the few requests the participants made. With regard to the economic costs, estimates for the current programs are about 2500 and 3000 US dollars, respectively. These costs might be considered fairly affordable within rehabilitation and care centers also in view of the fact that those programs could be shared by more participants, and could be used with regularity (Dahlin & Ryd´en, 2011; Lancioni, Singh et al., 2013; Wallace, 2011). Fourth, a number of research issues might need to be tackled by future work in this area. The most basic issue concerns replication, that is, the application of the programs to new participants to determine the generality of the present data and thus the strength of the programs themselves (Kennedy, 2005). Another issue would be to determine the effects of the programs on the participants’ general levels of activity/participation and mood. It might be that the programs help the participants have a constructive and positive outlook and counter their tendency to withdraw into a condition of detachment and depression (Geurtsen et al., 2011; Waldron, Casserly, & O’Sullivan, 2013). A third issue would concern the assessment of various combinations of microswitches and responses so as to have increased chances to suit participants with different conditions and needs (Lancioni, Sigafoos et al., 2012; Lui, Falk, & Chau, 2012; Memarian, Venetsanopoulos, & Chau, 2011; Posatskiy & Chau, 2012). In conclusion, the data of the present studies are encouraging as to the possibility of promoting leisure and communication opportunities for post-coma persons who have recovered consciousness but are affected by extensive neuro-motor impairments and lack of or limited speech. In addition to tackling the aforementioned research issues, efforts to advance the work in this area could involve social validation assessments, in which caregivers and rehabilitation staff are employed as social raters (Callahan, Henson, & Cowan, 2008; Kazdin, 2001; Scherer et al., 2011). Their views about
the current technology and their suggestions for upgrading it could provide a valuable input toward enhancing the quality and effectiveness of the work carried out (Barlow et al., 2009; Callahan et al., 2008; Galis, 2011; Lancioni, Singh et al., 2013; Scherer, 2012).
Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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NeuroRehabilitation 34 (2014) 749–758 DOI:10.3233/NRE-141075 IOS Press
Post-coma persons with multiple disabilities use assistive technology for their leisure engagement and communication Giulio E. Lancionia,∗ , Nirbhay N. Singhb , Mark F. O’Reillyc , Jeff Sigafoosd , Doretta Olivae , Francesca Buonocuntof , Valentina Saccof , Fiora D’Amicog , Jorge Navarrof , Crocifissa Lanzilottif , Marina De Tommasoa and Marisa Megnaa a Department
of Neuroscience and Sense Organs, University of Bari, Bari, Italy College of Georgia, Georgia Regents University, Augusta, GA, USA c University of Texas at Austin, TX, USA d Victoria University of Wellington, Wellington, New Zealand e Lega F. D’Oro Research Center, Osimo, Italy f S. Raffaele Rehabilitation Center, Ceglie Messapica, Italy g S. Raffaele Medical Care Center, Alberobello, Italy b Medical
Abstract. BACKGROUND: Interventions for post-coma persons, who have emerged from a minimally conscious state but present with extensive neuro-motor impairment and lack of or minimal verbal skills, need to promote occupation and communication through the use of assistive technology. OBJIECTIVE: These two studies were aimed at assessing two technology-aided programs to promote leisure engagement and communication for three post-coma participants with multiple disabilities. METHODS: Study I assessed a program to allow a woman and a man with extensive neuro-motor impairment and lack of speech to switch on music and videos, make requests to caregivers, and send messages to (communicate with) relevant partners and receive messages from those partners. Study II assessed a program to allow a post-coma woman with extensive motor impairment and reduced verbal behavior to activate music, videos and requests, send and receive messages, and make telephone calls. RESULTS: Data showed that both programs were successful. The participants of Study I managed leisure engagement, requests, as well as text messaging. The participant of Study II showed consistent leisure engagement, text messaging, and telephone calls. CONCLUSIONS: Assistive technology can be profitably used to provide post-coma persons with multiple disabilities relevant leisure and communication opportunities. Keywords: Leisure engagement, communication, post-coma persons with consciousness, multiple disabilities, assistive technology
1. Introduction The process and level of recovery shown by people with a history of coma can vary widely (Bruno, ∗ Address for correspondence: Giulio E. Lancioni, Department of Neuroscience and Sense Organs, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. Tel.: +39 080 552 1410; E-mail: giulio. [email protected].
Vanhaudenhuyse, Thibaut, Moonen, & Laureys, 2011; Demertzi, Soddu, & Laureys, 2013; Estraneo et al., 2013; Lancioni, Singh, O’Reilly, Sigafoos, Olivetti Belardinelli et al., 2012). Some people progress only marginally and reach a vegetative state, with negligible rehabilitation opportunities (Giacino & Kalmar, 2005; Lotze, Schertel, Birbaumer, & Kotchoubey, 2011; Von Wild, Laureys, Gerstenbrand, Dolce, & Onose, 2012).
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Other people reacquire their consciousness, communication and motor functions and return, with some help, to the activities and social contacts that they had before the brain injury and coma (Geurtsen, Van Heugten, Meijer, Martina, & Geurts, 2011; Katz, Polyak, Coughlan, Nichols, & Roche, 2009; Laureys & Schiff, 2012). A third group of people show levels of recovery falling somewhere between the aforementioned two extremes (Bekinschtein et al., 2005; Laureys & Schiff, 2012; No´e et al., 2012; Pistoia, Mura, Govoni, Fini, & Sar`a, 2010). This last group includes, among others, persons who have emerged from a minimally conscious state but present with extensive neuro-motor impairment and lack of or minimal verbal skills that reduce their opportunities of engagement and communication (Cavinato et al., 2009; Katz et al., 2009; Lancioni, O’Reilly, Singh, Buonocunto et al., 2011; Leisman & Kock, 2009; No´e et al., 2012; Rispoli, Machalicek, & Lang, 2010; Wallace & Bradshaw, 2011). Intervention programs for these persons would need to (a) support/facilitate their occupation and communication and (b) resort to the use of assistive technology solutions to bypass or reduce the negative impact of their disabilities (Bauer, Elsaesser, ¨ & Arthanat, 2011; Borg, Larson, & Ostergren, 2011; Chantry & Dunford, 2010; De Joode, Van Boxtel, Verhey, & Van Heugten, 2012; Lancioni, O’Reilly, Singh, Sigafoos, Buonocunto et al., 2011; Lancioni, Singh, O’Reilly, Sigafoos, Colonna et al., 2012; Lancioni, Singh, O’Reilly, Sigafoos, Ricci et al., 2012). A number of studies have been recently conducted with these persons, which are in line with the aforementioned goals. For example, Lancioni, Singh et al. (2011) used computer and microswitch technology to enable a post-coma woman with multiple disabilities to engage in leisure activities such as watching film segments or listening to songs on her own. Lancioni, O’Reilly, Singh, Buonocunto et al. (2011) used a computer provided with specific software, a global system for mobile communication modem, microswitches, and pre-recorded lists of messages to enable two post-coma adults with multiple disabilities to send messages to (communicate with) relevant partners and also receive messages from those partners. Lancioni, O’Reilly et al. (2013) integrated the two sets of technologies used in the aforementioned studies to enable two post-coma adults with multiple disabilities to combine leisure engagement (operating music and videos), requests to caregivers, and use of messages for communication with relevant partners. Finally, Lancioni, Singh et al. (2013) reported a further extension of the technology package to enable two post-coma adults with multiple
disabilities to combine leisure engagement, requests to caregivers, and use of messages with the activation of telephone calls. The positive outcomes of the aforementioned studies (a) constitute very encouraging evidence as to the possibility of widening the range of rehabilitation opportunities for these persons, and (b) underline the need of new research in the area to determine the reliability and practicality of the evidence available (Kennedy, 2005; Lancioni et al., 2010). The present two studies were aimed at extending the research carried out by Lancioni, O’Reilly et al. (2013) and by Lancioni, Singh et al. (2013) with new participants. The first of the two studies involved a woman and a man who had emerged from a minimally conscious state, but presented with pervasive neuro-motor impairment and lack of speech. The second study involved a woman who, contrary to the participants of the first study, possessed some speech.
2. Study I 2.1. Method 2.1.1. Participants The participants (Francine and Paul) were 63 and 68 years old, respectively. Francine had suffered rupture of intracranial aneurysm of the left posterior cerebral artery with subsequent extended subarachnoid hemorrhage and coma, about 4 months prior to the beginning of this study. Angiographic arterial embolization had been carried out and a ventricular shunt had been applied. A post-embolization brain CT scan had shown an extended left fronto-temporo-parietal ischemic area. The initial coma condition was replaced by a vegetative state, which evolved into a minimally conscious state after about 1 month. Her condition continued to improve and, by the start of this study, she had fully emerged from the minimally conscious state. She presented with spastic right hemiplegia and minimal control of head and trunk, right homonymous hemianopsia, motor aphasia and severe ideomotor apraxia. She could not manipulate objects and could not access preferred stimulus events. She did not have speech abilities, but responded reliably to autobiographical questions as well as to questions concerning her needs and feelings through head movements that were interpreted as “yes” and “no”. She enjoyed the company of family members and friends, followed their conversations, and responded to them reliably (i.e., through
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head movements). She used a nasogastric tube for nutrition and was also fitted with a tracheostomy tube and a urinary catheter. Her general performance seemed to amply fulfill the requirements of the sixth level of the Rancho Los Amigos – Revised Levels of Cognitive Functioning (see Hagen, 1998). Paul had been involved in a work accident causing severe traumatic brain injury and subsequent coma, about 6 months prior to the beginning of this study. A brain CT scan had shown frontal and right parietal hematoma and right hemisphere subarachnoid hemorrhage. No neurosurgery was carried out. Magnetic resonance imaging had shown a diffuse axonal injury with multiple frontal and splenium of the corpus callosum lesions. His coma lasted about 3 weeks and was replaced by a vegetative state condition, which shortly thereafter changed into a minimally conscious state. He had emerged from this latter state, with reacquisition of consciousness and had the ability to follow simple conversations about familiar daily events and persons. He had no speech, but could respond to questions and ongoing conversations with eye blinks or mouth movements. He presented with severe tetraparesis prevalent on the left side, multiple tendon-muscle retractions and minimal control of head and trunk. He used a gastrostomy tube for nutrition and was also fitted with a tracheostomy tube and a urinary catheter. He had received the same ranking as Francine on the Rancho Levels of Cognitive Functioning (see Hagen, 1998). Both participants enjoyed popular music (instrumental pieces and songs) and videos concerning nature, family events, popular movies as well as sport. They were known to like (or need) caregiver’s procedures, such as face washing, arm massaging, and position changing, and relished contact and communication with family members, relatives, and friends. They were also reported to be interested in listening to voice messages or phone calls from those people and plausibly in sending messages to them. They and their families showed interest in a technology-aided program that allowed access to leisure (music and video) activities, request options, and communication opportunities through text messages. Their families had also signed a formal consent for their participation in this study, which had been approved by a scientific and ethics committee. 2.1.2. Setting, sessions, and data collection The study was carried out in the participants’ rooms at the medical rehabilitation center in which they were treated. Baseline sessions were restricted to 10 min, as no independent responses were expected. The interven-
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tion sessions lasted 15 min (or until the participants had completed any activity started before the 15-min limit; see below). Sessions focused on leisure engagement and requests to caregivers as well as on text messaging. For recreation engagement and requests, recording concerned the frequencies of videos and songs activated and of requests made. For text messaging, recording concerned the frequencies of messages sent out and listened to. Interrater reliability was assessed in about 25% of the sessions, in which two research assistants recorded the measures simultaneously. Mean percentages of agreement on the single measures (computed by dividing the agreements by the agreements plus disagreements and multiplying by 100) exceeded 90. 2.1.3. Assistive technology and response The assistive technology available for the two participants involved a computer/control system with screen and sound amplifier, a mobile communication modem, a microswitch (i.e., a touch-pressure device) and relative interface connecting it to the computer, a headset, and specific software. The microswitch was a thin box-like device fixed inside the participant’s left hand (Francine) or right hand (Paul), included a touch and a pressure membrane, and could be activated by a small hand-closure response suitable to both participants (see Lancioni, Sigafoos, O’Reilly, & Singh, 2012). The software (written with Borland Delphi Developer Studio, from Inprise Corporation, 2005) ensured that the computer system would (a) show pictorial images of the options available for choice (i.e., songs, videos, requests, and text messages) on its screen, (b) verbally identify and scan (illuminate) one of the images at a time for 5 s, and (c) respond to microswitch activations. 2.1.4. Song, video, and request options If the participants chose one of the first three options, that is, songs, videos, or requests (i.e., activated the microswitch while the image of such an option was being scanned), a new set of six pictorial images related to the option chosen would appear on the computer screen. Each of the images was automatically scanned for 5 s. If the participants selected one of the song or video options, the computer system played such a song or showed that video for 2–3 min. The participants could interrupt it at any time by activating the microswitch. If the participants selected one of the request options, the computer system verbalized such a request so that the caregivers could respond to it. The request options included, among others, a change of position, arms/legs massaging, and face washing. The
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system automatically reset the original screen with the four choice options. 2.1.5. Text messaging option If the participants chose text messaging, the computer system verbally acknowledged that they could send messages to family members, relatives, and friends. Four to six persons per category were available. The system presented the categories individually at intervals of 5 s. When the participant selected a category (i.e., via microswitch activation within 5 s from the verbal identification of it), the system verbally presented the persons/partners included in that category, one at a time. Selection of a partner (i.e., via microswitch activation) led the system to verbalize the message topics available. The participant could choose among four or five message topics, such as telling the partner about his or her condition, asking for news, and sending love/greetings. The system verbalized each message topic individually (Lancioni, Singh et al., 2013). As soon as the participant selected a message topic (i.e., via microswitch activation), the system started to verbalize the four to seven specific messages available for that topic. Depending on the topic, the messages could consist of phrases such as: “I am doing better today”, “how is your work going?”, “how are the children doing in school?”, “when can you visit me?”, and “I love you and miss you”. The system verbalized the messages individually. When the participant selected a message (i.e., via microswitch activation), the system sent that 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 or reading a message, the system reset the original screen with the four choice options. 2.1.6. Experimental conditions For each participant, the study was carried out according to an ABAB design, in which the A and B represented baseline and intervention phases, respectively (Barlow, Nock, & Hersen, 2009). 2.1.6.1. Baseline phases. Each baseline phase included two 10-min sessions, in which the participants were provided with a computer showing song, video, and request options on its screen, a mouse to activate those options, and a mobile telephone for text messaging. Lack of responding after 3–4 min led the research assistant to activate one of the aforementioned options or send a message for the participants. 2.1.6.2. Intervention phases. The intervention phases included 48 and 75 sessions for Francine, and 43 and 71 sessions for Paul. During these sessions, the full technology package (i.e., including the microswitch) was available and worked as described above. The first intervention phase was preceded by seven practice sessions in which the research assistant helped the participants activate and experience each of the choice options by performing the response sequences required. 2.2. Results Figures 1 and 2 summarize the data for Francine and Paul, respectively. The bars in their entirety (i.e., full height) represent mean cumulative frequencies of options selected per session over blocks of sessions.
Fig. 1. Francine’s data. The bars represent mean cumulative frequencies of options selected per session over blocks of sessions. The dark gray, white, and light gray components of the bars represent mean frequencies for (a) songs and videos, (b) requests and (c) text messages sent out and received (listened to), respectively. The number of sessions included in each block/bar is indicated by the numeral above it.
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Fig. 2. Paul’s data plotted as in Fig. 1.
The dark gray, white, and light gray components of the bars represent mean frequencies for (a) songs and videos, (b) requests and (c) text messages sent out and received (listened to), respectively. The number of sessions included in each block/bar is indicated by the numeral above it. During the first baseline, the participants did not perform any choice response, as they could not use the mouse or the mobile telephone. During the first intervention phase, both participants gained successful performance and activated each of the choice options available. The mean cumulative frequencies of options selected per session were above five and a half and about four and a half for Francine and Paul, respectively. Choices concerning videos, songs, and requests accounted for less than half of the total for Francine and more than half of the total for Paul. The frequency of requests was rather low for both participants. The data for the second baseline and second intervention phase were identical or similar to those mentioned above.
3. Study II 3.1. Method 3.1.1. Participant The participant (Erin) was 85 years old. She had suffered a right total anterior circulation stroke with subsequent coma, more than 1 year prior to this study. Her brain CT scan showed an extensive right frontotemporo-parietal ischemic lesion with minimal shift of the midline. The recovery from the coma state had been marked by a period of minimally conscious state, from which she had successfully emerged. By the time of the study, she presented with pervasive motor impairment,
which included severe tetraparesis prevalent on the left side and minimal control of head and trunk and left unilateral spatial neglect. She was rated at the seventh level of the Rancho Los Amigos – Revised Levels of Cognitive Functioning (see Hagen, 1998). She enjoyed listening to music and watching brief videos of comic and popular films or of religious and family events. She also enjoyed contact and communication with her son and daughter and their spouses, her grandchildren and friends. Indeed, she was visibly happy when these people visited with her at the medical care center in which she was treated. She also liked to have telephone conversations with them and could show signs of emotions while listening to them talking. She tended to listen more than to talk, as she found talking rather difficult. She and her family agreed to use a technologyaided program that allowed her to choose among leisure (music and video) opportunities, make simple requests to staff, send and receive (listen to) text messages, and make telephone calls. Her family had signed a formal consent for her participation in this study, which had been approved by a scientific and ethics committee. 3.1.2. Setting, sessions, and data collection The study was carried out in Erin’s room at the medical care center in which she was treated. Baseline and intervention sessions were as in Study I. For leisure engagement and requests, recording concerned the frequencies of videos and songs activated and of requests made. For text messaging, recording concerned the frequencies of messages sent out and listened to. For telephone calls, recording concerned the frequencies of calls made. Interrater reliability was assessed in about 25% of the sessions, in which two research assistants recorded the measures simultaneously. Mean
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percentages of agreement on the single measures (computed by dividing the agreements by the agreements plus disagreements and multiplying by 100) exceeded 90.
3.1.6. Experimental conditions The study was carried out according to an ABAB design, in which the A and B represented baseline and intervention phases, respectively (Barlow et al., 2009).
3.1.3. Assistive technology and response The assistive technology used for Erin’s program matched that of Study I with one exception. The choice options shown on the computer screen and available for the participant to choose also included telephone calls (see below).
3.1.6.1. Baseline phases. Each baseline phase included two 10-min sessions. Erin was provided with a computer showing song, video, and request options on its screen, a mouse to activate those options, and a mobile telephone for text messaging and telephone calls (see Study I). Lack of responding after 3–4 min led the research assistant to activate one of the aforementioned options or send a message for Erin, as in Study I.
3.1.4. Song, video, request, and text messaging options Conditions matched those available in Study I, but songs and videos generally lasted about 1.5 min (i.e., this length was considered to be more suitable to Erin’s characteristics). 3.1.5. Telephone call option If Erin chose to make a telephone call, the computer system verbally acknowledged that she could call her son and daughter (as well as their spouses), her grandchildren, and friends (i.e., four or five persons per category). The system verbalized one of those categories at a time, at intervals of 5 s. When Erin selected a category (i.e., by activating the microswitch following its identification), the system verbalized the persons/partners included in that category, one at a time. When Erin selected a partner (i.e., by activating the microswitch following his or her identification), the system placed a call to him or her. After the end of the conversation with a partner the system reset the screen with all the choice options.
3.1.6.2. Intervention phases. The intervention phases included 42 and 70 15-min sessions, respectively. During these sessions, the complete technology package was available. Erin used the microswitch to make option selections (see Study I). The first intervention phase was preceded by six practice sessions in which the research assistant helped Erin activate and experience each of the choice options by performing the response sequences required. 3.2. Results Figure 3 summarizes Erin’s data. The bars in their entirety represent mean cumulative frequencies of options selected per session over blocks of sessions. The dark gray components of the bars represent mean frequencies for songs, videos, and requests together. Requests were collapsed with songs and videos, because they were few. The light gray and black components of the bars represent mean frequencies for
Fig. 3. Erin’s data plotted as in Fig. 1, with the exception that the bars include dark gray, light gray, and black components, which represent mean frequencies for (a) songs, and videos, and requests together, (b) text messages sent out and received (listened to), and (c) telephone calls made, respectively.
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(a) text messages sent out and received (listened to), and (b) telephone calls made, respectively. The number of sessions included in each block is indicated by the numeral above it. During the first baseline, Erin did not perform any choice response, as she could not use the mouse or mobile telephone. During the first intervention phase, Erin gained successful performance. The mean cumulative frequency of options selected per session was about six. Choices concerning videos, songs, and requests accounted for slightly more than half of the total. The mean frequency of text messages sent out and listened to neared two per session. The mean frequency of phone calls made was close to one per session. The performance observed during the second baseline and the second intervention phase was identical or similar to that reported for the first baseline and first intervention phase.
4. General discussion The data of Study I, in line with the results of Lancioni, O’Reilly et al. (2013), indicate that two post-coma participants, who had emerged from a minimally conscious state but suffered from extensive neuro-motor impairment and lack of speech, could successfully manage leisure engagement, requests and text messaging through assistive technology. The data of Study II, in line with the findings of Lancioni, Singh et al. (2013), indicate that the leisure and communication opportunities of a post-coma woman with neuro-motor impairment and limited speech could be extended beyond those of Study I (i.e., with the addition of telephone calls). In light of these data, a number of considerations might be put forward. First, the evidence of the overall effectiveness of the technology-aided programs implemented in the two new studies may be considered quite relevant. In fact, it (a) constitutes a careful demonstration of the possibility of combining leisure and communication opportunities for post-coma persons with multiple disabilities through assistive technology, (b) adds to the preliminary (encouraging but limited) data available in this context, and (c) strengthens the view that it might be possible to help these persons improve their rehabilitation and life perspectives in a reasonable and affordable way (Bauer et al., 2011; Borg et al., 2011; Davies, Mudge, Ameratunga, & Stott, 2010; De Joode et al., 2012; H¨aggstr¨om & Lund, 2008; Lancioni, O’Reilly et al., 2012; Lancioni, Singh, O’Reilly, Sigafoos, Ferlisi et al., 2012).
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Second, the implications of enabling persons with extensive neuro-motor impairment and lack of or limited speech to (a) access a variety of leisure events and (b) manage communication through messaging or messaging and telephone calls (besides the request option) cannot be easily overemphasized (Davies et al., 2010; H¨aggstr¨om & Lund, 2008; Katz et al., 2009; Lancioni, O’Reilly et al., 2012, 2013; Ripat & Woodgate, 2011; Ward, 2012). Direct and independent access to leisure stimuli can provide the participants a sense of pleasure connected to the sensory input as well as satisfaction due to their exercise of self-determination and choice (Heinicke, Carr, Eastridge, Kupfer, & Mozzoni, 2013; Wehman, Gentry, West, & Arango-Lasprilla, 2009). Text messaging to partners (albeit rather unsophisticated given the use of preset messages) may serve as an easy and effective way to (a) establish connection with socially relevant people, (b) prompt them to reply with personal messages, thus generating communication events, and (c) create conditions for rediscovering social-emotional ties and closeness between participants and partners with beneficial effects for both parties (Jumisko, Lexell, & S¨oderberg, 2009; Lancioni, Singh, O’Reilly, Sigafoos, Ferlisi et al., 2012; Man, Yip, Ko, Kwok, & Tsang, 2010; Mortenson et al., 2012; Wolters, Stapert, Brands, & Van Heugten, 2010). The use of telephone calls allows the participant to have direct contact with the partners. Such contact might be important not only for the types of communication/conversation contents exchanged, but also (or even more) for the emotional sharing with the partners (Braine, 2011; Togher, Power, Rietdijk, McDonald, & Tate, 2012). The possibility of activating requests to satisfy desires and/or needs in a rapid manner and without confusions or difficulties seems to underline the programs’ practical value (Beukelman, Fager, Ball, & Dietz, 2008; Casey, 2011; Fried-Oken, Beukelman, & Hux, 2011). The fact that the participants of both studies had low frequencies of requests during the sessions might have two complementary explanations. That is, (a) the participants were attracted by the other (leisure and communication) features of the programs and thus had limited time left for the request option and (b) the range of requests available for such option did not cover events representing high levels of desire or need (Kazdin, 2001; Lancioni, Singh et al., 2011). Third, the participants’ consistent choice responding across sessions might be taken to suggest that the assumptions made above about the relevance and positive values of the programs were largely accurate and that the participants enjoyed the leisure and
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communication opportunities. Participants’ enjoyment is a critical condition, namely, the most important variable in support of their motivation to remain actively engaged with their environment (Scherer, Craddock, & Mackeogh, 2011). Two other variables that determine the viability of a program are its implementation cost in terms of staff and caregivers’ time and its economical affordability (Dahlin & Ryd´en, 2011; Hubbard Winkler et al., 2010; Lancioni, Sigafoos et al., 2012). With regard to the implementation/time cost, the programs reported here were totally viable, as participants were independent in their performance, and staff and caregivers were required to intervene only with regard to the few requests the participants made. With regard to the economic costs, estimates for the current programs are about 2500 and 3000 US dollars, respectively. These costs might be considered fairly affordable within rehabilitation and care centers also in view of the fact that those programs could be shared by more participants, and could be used with regularity (Dahlin & Ryd´en, 2011; Lancioni, Singh et al., 2013; Wallace, 2011). Fourth, a number of research issues might need to be tackled by future work in this area. The most basic issue concerns replication, that is, the application of the programs to new participants to determine the generality of the present data and thus the strength of the programs themselves (Kennedy, 2005). Another issue would be to determine the effects of the programs on the participants’ general levels of activity/participation and mood. It might be that the programs help the participants have a constructive and positive outlook and counter their tendency to withdraw into a condition of detachment and depression (Geurtsen et al., 2011; Waldron, Casserly, & O’Sullivan, 2013). A third issue would concern the assessment of various combinations of microswitches and responses so as to have increased chances to suit participants with different conditions and needs (Lancioni, Sigafoos et al., 2012; Lui, Falk, & Chau, 2012; Memarian, Venetsanopoulos, & Chau, 2011; Posatskiy & Chau, 2012). In conclusion, the data of the present studies are encouraging as to the possibility of promoting leisure and communication opportunities for post-coma persons who have recovered consciousness but are affected by extensive neuro-motor impairments and lack of or limited speech. In addition to tackling the aforementioned research issues, efforts to advance the work in this area could involve social validation assessments, in which caregivers and rehabilitation staff are employed as social raters (Callahan, Henson, & Cowan, 2008; Kazdin, 2001; Scherer et al., 2011). Their views about
the current technology and their suggestions for upgrading it could provide a valuable input toward enhancing the quality and effectiveness of the work carried out (Barlow et al., 2009; Callahan et al., 2008; Galis, 2011; Lancioni, Singh et al., 2013; Scherer, 2012).
Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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