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consciousness impairments choose among environmental stimuli and request stimulus repetitions via assistive technology
Research in Developmental Disabilities 31 (2010) 777–783
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Research in Developmental Disabilities
Post-coma persons with motor and communication/consciousness impairments choose among environmental stimuli and request stimulus repetitions via assistive technology Giulio E. Lancioni a,*, Nirbhay N. Singh b, Mark F. O’Reilly c, Jeff Sigafoos d, Francesca Buonocunto e, Valentina Sacco e, Fabio Colonna e, Jorge Navarro e, Crocifissa Lanzilotti e, Doretta Oliva f, Gianfranco Megna a a
University of Bari, Italy ONE Research Institute, Midlothian, VA, USA c Meadows Center for Preventing Educational Risk, University of Texas at Austin, TX, USA d Victoria University of Wellington, New Zealand e S. Raffaele Rehabilitation Center, Ceglie Messapica, Italy f Lega F. D’Oro Research Center, Osimo, Italy b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 14 January 2010 Accepted 5 February 2010
This study assessed whether a program based on microswitch and computer technology would enable three post-coma participants (adults) with motor and communication/ consciousness impairments to choose among environmental stimuli and request their repetition whenever they so desired. Within each session, 16 stimuli (12 preferred and 4 non-preferred) were scheduled for the participants. For each stimulus, a computer system provided a sample of a 3-s duration. During the intervention, participants’ responding (e.g., eye blinking and hand closure) in relation to a stimulus sample activated a microswitch and led the computer system to turn on that stimulus for 20 s. Participants’ lack of responding led the computer system to pause briefly and then present the next scheduled stimulus sample. When participants responded immediately after (i.e., within 6 s from) the end of a stimulus presentation, that stimulus was repeated. Intervention data showed response increases, which were very consistent for two participants and moderate for the third one. All participants asked for the repetition of preferred stimuli and showed minimal responding in relation to non-preferred stimuli. The results were discussed in light of their possible implications for new, person-centered rehabilitation programs for post-coma persons with multiple disabilities. ß 2010 Elsevier Ltd. All rights reserved.
Keywords: Microswitch Computer technology Post-coma Consciousness disorders Motor impairment Communication disabilities
1. Introduction The use of technological resources, such as microswitches, computer devices, and voice output communication aids (VOCAs), might be crucial to help post-coma persons with multiple (i.e., motor and communication/consciousness) impairments acquire control of environmental events through small and simple responses (Lancioni, O’Reilly, et al., 2008; Lancioni, O’Reilly, et al., 2009; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Megna, et al., 2009; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009). For example, a contact or
* Corresponding author at: Department of Psychology, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. E-mail address: [email protected] (G.E. Lancioni). 0891-4222/$ – see front matter ß 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ridd.2010.02.001
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pressure microswitch could enable a person to turn on a music source through a response such as a small hand-closure movement (Holburn, Nguyen, & Vietze, 2004; Lancioni, Olivetti Belardinelli, et al., 2008; Lancioni, O’Reilly, et al., 2009). Microswitch and computer technology could also serve as a means by which these persons become capable of choosing among various stimuli made available to them within their environment. For example, the person could be presented with brief samples (previews) of the stimuli (e.g., songs and video-clips), one every 30 s. In relation to each stimulus sample, the person could choose to listen to or view that stimulus (by activating a microswitch within a few seconds) or to bypass that stimulus (by not activating the microswitch) (cf. Lancioni, O’Reilly, Singh, Sigafoos, Didden, et al., 2006; Lim, Browder, & Bambara, 2001). The person could also be allowed to ask for the repetition of a specific stimulus after his or her first selection of it, if he or she so desires (i.e., if he or she finds it particularly enjoyable). This could be accomplished through a repetition of the selection response (i.e., microswitch activation) immediately after the end of the stimulus presentation (Lancioni, O’Reilly, et al., 2009; Lancioni, Singh, et al., 2006). A program including choice and opportunities for repetition requests, such as those mentioned above, was recently developed and tested with two persons with combinations of intellectual, motor and sensory disabilities (Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006). The results were encouraging, with both participants becoming relatively active in (a) selecting stimuli that they were considered to prefer and bypassing stimuli that they were considered to dislike (or to find unattractive), and (b) asking for the repetition of some of the former stimuli, probably the most preferred by them, thus indicating clear signs of purposeful choice behavior (cf. Cannella, O’Reilly, & Lancioni, 2005; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009; Reyer & Sturmey, 2009; Sarimski, 2002; Singh et al., 2003). A program similar to that just described could also be conceived and realized with post-coma persons with multiple impairments. These persons too could be provided with the opportunity to (a) choose among a variety of stimuli made available to them through a computer system, and (b) ask for stimulus repetitions whenever they so desire, by using simple responses performed via microswitches linked to the computer system. Such an opportunity would enrich their stimulation input and allow them an active role (i.e., self-determination) with positive implications on a personal and social level (Algozzine, Browder, Karvonen, Test, & Wood, 2001; Felce & Perry, 1995; Holburn et al., 2004; Schalock et al., 2005; Wales & Waite, 2005). The purpose of this study was to set up and evaluate such a program with three post-coma participants (adults), who presented with extensive motor disabilities as well as communication and consciousness impairments. The program relied on microswitch and computer technology comparable to that described above (Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006). 2. Method 2.1. Participants The participants (Alfred, Edith, and Becky) were 22, 81, and 51 years old, respectively. Alfred had been involved in a road accident, resulting in multiple fractures of bilateral orbitals, legs and arms and severe brain injury with subsequent coma, about 2 years prior to the beginning of this study. A brain CT scan had shown cerebral edema and hypodense areas at the mesencephalic level and at the head of the caudate nucleus. Magnetic resonance imaging had shown diffuse axonal injury with white matter lesions of fronto-parietal, periventricular, splenium of the corpus callosum and mesencephalic regions. The coma condition lasted about 2 weeks and was then replaced by a vegetative state, which developed into a minimally conscious state after about 3 months. At the time of this study, he presented with spastic tetraparesis, reduced head control, minimal trunk control, urinary and fecal incontinence, apathy or oppositional behavior, and lack of speech. He was rated at the sixth level of the Rancho Levels of Cognitive Functioning (based on the confused-appropriate response dimension; see Hagen, 1998). His total score on the Disability Rating Scale was 19 (extremely severe disability) (Rappaport, Hall, Hopkins, Belleza, & Cope, 1982). Edith had suffered brainstem, cerebellar and temporal ischemic strokes about 3 months prior to the beginning of this study. The strokes led to a brief coma followed by a minimally conscious state, which remained largely unaltered over time. A brain CT scan had shown bilateral pontine, cerebellar and right temporo-basal ischemic lesions. At the time of this study, she presented with spastic tetraplegia with limited head control and no trunk control, and lack of speech. She showed fecal and urinary incontinence and used a gastrostomy tube for enteral nutrition. EEG recordings showed disorganized background activity with medium voltage and diffuse bihemispheric theta rhythm. Her total score on the Coma Recovery Scale-Revised was 11; with partial scores of 1 on the communication and oromotor/verbal subscales, 2 on the arousal, auditory and motor subscales, and 3 on the visual subscale (Kalmar & Giacino, 2005; Lombardi, Gatta, Sacco, Muratori, & Carolei, 2007). She was also rated at the third level of the Rancho Levels of Cognitive Functioning (i.e., localized response and total assistance; see Hagen, 1998). Becky had suffered a rupture of intracranial aneurysm of the left internal carotid artery, with subsequent extended subarachnoid hemorrhage and coma, about 4 months prior to the beginning of this study. A brain CT scan had shown tentorial, left perivermian, left capsule-lenticular and falx cerebri hemorrhage with a midline shift. Angiographic arterial embolization was immediately carried out and the hematoma was evacuated after left fronto-temporo-parietal decompressive craniotomy. The postoperative CT control showed new ischemic cortical–subcortical lesions in the left fronto-temporo-parietal regions. A ventriculo-peritoneal shunt was subsequently applied due to the appearance of posthemorrhagic hydrocephalus. The coma condition lasted about 3 weeks and was replaced by a vegetative state. This
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evolved into a minimally conscious state over a period of about 2 months. At the time of this study, Becky presented with right spastic hemiplegia, tendon–muscle retractions and limited control of head and trunk, and lack of speech. She showed fecal and urinary incontinence, used a gastrostomy tube for enteral nutrition, and was fitted with a tracheostomy tube. EEG recordings showed disorganized asymmetric alpha rhythm on the background activity, with low voltage and theta rhythm on the left temporal region. Her total score on the Coma Recovery Scale-Revised was 15; with partial scores of 1 on the communication subscale, 2 on the arousal, auditory and oromotor/verbal subscales, and 4 on the motor and visual subscales. Like Edith, she was rated at the third level of the Rancho Levels of Cognitive Functioning. 2.2. Responses, microswitches, and computer system The responses whereby the participants could choose and actively request the stimuli consisted of a hand pressure (Alfred), a double eyelid closure within a 2-s interval and/or a light head movement (Edith), and a hand-closure movement (Becky). The responses were already present (at low frequencies) in the participants’ repertoire, seemed fairly feasible for the participants to perform, and could be reliably matched with available or newly developed technology (Lancioni, O’Reilly, et al., 2008). The microswitch used for detecting hand pressure was a pressure sensor placed in front of Alfred. The microswitch for detecting the double eyelid closure was a simplified version of the optic sensor used in previous research (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009) and consisted of a light-emitting diode and lightdetection unit directed to Edith’s right eye and fixed on her forehead (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009). The microswitch used for detecting head movement was a touch sensor placed under (very close to) Edith’s chin. The microswitch used for detecting the hand-closure movement responses involved a twomembrane sensor embedded in a small box-like structure placed inside Becky’s left hand. The outer membrane of the sensor (i.e., the one facing the fingers) was a touch-sensitive layer and was activated by the simple contact of the fingers; the inner membrane was activated if Becky applied a pressure of about 20 g (Lancioni, O’Reilly, et al., 2008). The computer system included a set of 16 stimuli at each session. Twelve of the stimuli were considered preferred by the participants (e.g., pieces of songs or of people talking), while the other four were considered non-preferred (e.g., distorted sounds). The latter stimuli were expected to have a low selection rate compared to the preferred stimuli and, in such a way, to imply that there was real choice by the participants (Cannella et al., 2005; Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006; Sarimski, 2002). Preferred and non-preferred stimuli were automatically interspersed. For each stimulus, the computer system (a) presented a sample of 3 s combining it with verbal expressions such as ‘‘and this?’’ or ‘‘want it?’’, (b) recorded the participant’s responding to the sample, that is, microswitch activation or lack thereof within a 6-s interval, (c) turned on the stimulus matching the sample for 20 s in case of microswitch activation (except in the baseline phase; see below), and (d) repeated a 20-s presentation of a stimulus if an active request occurred within 6 s from the end of its previous presentation. A pause interval of 6–10 s occurred between the end of a stimulus episode or the lack of responding to a stimulus sample and the presentation of the next stimulus sample. 2.3. Selection of stimuli Interviews with family members, observations, and a brief screening for stimulus preference were used to select presumably preferred stimuli for the study. The screening involved the presentation of some of the stimuli identified through interviews and observations (e.g., a selection of music, video and song clips out of the variety of music, video and song stimuli identified) 10–20 nonconsecutive times, for about 10 s each time (Crawford & Schuster, 1993). A stimulus category (e.g., instrumental music) was retained for the study if the participant was apparently alerting, orienting or smiling to the stimulus clips of that category in about or more than 50% of the screening presentations (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009). The stimuli selected as preferred included, among others, popular songs, instrumental music, family members and friends talking, and video-clips of comic gags or of family celebrations supplemented with verbal comments and music. The stimuli selected as non-preferred, based on their presumed tediousness or annoyance, consisted of distorted sounds and voices. The stimuli were arranged into four (Edith) or five (Becky and Alfred) sets, each of which included 12 preferred and 4 non-preferred stimuli (see above). The sets were rotated across sessions. 2.4. Experimental conditions The study was carried out according to a non-concurrent multiple baseline design across participants (Barlow, Nock, & Hersen, 2009). The data from the sessions (i.e., microswitch activations/responses, stimuli selected, and session duration) were automatically recorded through the computer system. Sessions typically occurred once or twice a day and lasted until all stimulus samples had been presented or a period of about 60 min had elapsed, whichever came first. 2.4.1. Baseline The baseline included 5, 8, and 12 sessions for the three participants, respectively. The computer system presented the stimulus samples as described above. However, microswitch activation by the participants did not turn on the stimuli (see above). Prior to each baseline session, the participants were physically prompted to activate their microswitches in relation
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Fig. 1. Data for Alfred. The upper graph shows mean frequencies of preferred stimuli selected per session over blocks of two sessions. Only the last point of the baseline represents a single session. The lower graph shows the mean frequencies of responses per session for the preferred stimuli selected within the same blocks of sessions.
to a sample of a preferred stimulus but no consequences occurred. The same prompting could be repeated during the session if the participants failed to respond to five or six stimulus samples in succession. Again, no consequences occurred. 2.4.2. Intervention The intervention included 68, 75, and 63 sessions for the three participants, respectively. Procedural conditions were as in baseline except that microswitch activation within 6 s from the presentation of a stimulus sample or from the end of a 20 s stimulus episode led to the occurrence or the repetition of the stimulus for 20 s. The intervention phase was preceded by three to six introduction sessions in which participants were prompted to activate their microswitches in relation to samples of the preferred stimuli and, also, following the full presentation of some of those stimuli. Stimulus consequences occurred as during regular intervention sessions. 3. Results Figs. 1–3 show the participants’ performance. The upper graph of each figure shows the mean frequency of preferred stimuli selected per session over blocks of two sessions. Single sessions may be represented by the last point of baseline and intervention phases. The lower graph shows the mean frequencies of responses (first choice plus repetition requests) per session that occurred across the same blocks of sessions. During the baseline phase, the participants’ mean frequencies of
Fig. 2. Data for Edith plotted as in Fig. 1.
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Fig. 3. Data for Becky plotted as in Fig. 1.
preferred stimuli selected were about or below three (Edith and Alfred) or below five (Becky). The mean frequencies of responses corresponded to the stimuli selected, as repetition requests were not possible during baseline. During the intervention phase, the participants’ mean frequencies of preferred stimuli selected were about eight, eight, and nine, respectively. Their mean frequencies of responses were about 116, 18, and 94, with means exceeding 14, 2, and 10 responses per stimulus, respectively. The high frequencies of Alfred and Becky involved a rapid responding surge and a more gradual slope, respectively. The sessions of these two participants were frequently interrupted after a period of about 60 min had elapsed. Selection of non-preferred stimuli (not reported in the figures) occurred at fairly low rates (Edith and Becky) or extremely rarely (Alfred). Moreover, the frequency of responses for these stimuli was typically one (i.e., with no repetition requests). 4. Discussion These findings support and extend the data previously obtained with participants with no coma recovery history (Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006). In fact, the post-coma persons involved in the present study were relatively inactive during the baseline and moderately (Edith) or greatly (Becky and Alfred) active during the intervention period. The frequencies of preferred stimuli selected and the number of responses provided for those stimuli appeared rather high compared to the sporadic responding on non-preferred stimuli and suggested that the participants had purposeful choice behavior (cf. Cannella et al., 2005; Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006; Sarimski, 2002; Singh et al., 2003; Van Acker & Grant, 1995). The high level of responding expressed by Becky and Alfred might be linked to two main issues, namely, their relatively positive condition/status and their reportedly high enjoyment of the stimuli available. With regard to the status, Alfred seemed to be at the level in which a patient is rediscovering/recapturing the function of objects and stimuli in general (Hagen, 1998). Becky was still diagnosed in a condition of minimal consciousness but showed protracted, attentive wakefulness. Both participants seemed easily attracted by the preferred stimuli available in the sessions. Their interest in and enjoyment of those stimuli were actually confirmed by (a) the high concentrations of repetition requests among those stimuli (with informal reports suggesting high request levels on, among others, special songs and comic gags, and on grandchildren and friends’ voices and musical items, respectively), and (b) the frequent (informal) reports of indices of happiness, such as smiles, accompanying the sessions (Davis, Young, Cherry, Dahman, & Rehfeldt, 2004; Kazdin, 2001; Spevack, Martin, Hiebert, Yu, & Martin, 2005). The modest level of responding expressed by Edith might have been related to (a) a more serious condition, which placed her in the lower-central section of the minimally conscious state, (b) lower levels and shorter periods of wakefulness with seemingly fluctuating attention, and (c) probably a less obvious (intense) preference for the stimuli available with a reduced (or only momentary) enjoyment of their occurrence. It is noteworthy that even in this modest overall condition, Edith could ask for the repetition of some of the stimuli and generally did not select the stimuli deemed to be non-preferred, thus showing positive engagement and presumably purposeful choice behavior (Browder, Cooper, & Lim, 1998; Cannella et al., 2005). The microswitch and computer technology used in this study may be considered critical for the realization of the intervention program reported and for its overall positive outcome (Hourcade, Pilotte, West, & Parette, 2004). The program can be viewed as a relevant resource for post-coma persons with motor and communication/consciousness impairments because (a) it appears fairly easy to implement for professionals and caregivers alike, and (b) it may be
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used on a daily basis to enhance the participant’s opportunities for stimulation (including exposure to new stimuli for which no preference value is known) and promote alertness, self-determination and, probably, a beneficial level of enjoyment. All these aspects are important from a practical and rehabilitation standpoint as well as in terms of personal fulfillment, dignity, and quality of life (Cavalier & Brown, 1998; Felce & Perry, 1995; Lachapelle et al., 2005; Petry, Maes, & Vlaskamp, 2005; Wehmeyer, 2005). In conclusion, the results provide encouraging evidence on the possibility of enabling individuals with multiple disabilities following acquired brain injury to choose among environmental stimuli and to request the repetition of presumably the most enjoyable ones. New research may help to determine the generality of these results and assess ways of devising and upgrading technology according to the persons’ status (Baker & Moon, 2008). 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Research in Developmental Disabilities
Post-coma persons with motor and communication/consciousness impairments choose among environmental stimuli and request stimulus repetitions via assistive technology Giulio E. Lancioni a,*, Nirbhay N. Singh b, Mark F. O’Reilly c, Jeff Sigafoos d, Francesca Buonocunto e, Valentina Sacco e, Fabio Colonna e, Jorge Navarro e, Crocifissa Lanzilotti e, Doretta Oliva f, Gianfranco Megna a a
University of Bari, Italy ONE Research Institute, Midlothian, VA, USA c Meadows Center for Preventing Educational Risk, University of Texas at Austin, TX, USA d Victoria University of Wellington, New Zealand e S. Raffaele Rehabilitation Center, Ceglie Messapica, Italy f Lega F. D’Oro Research Center, Osimo, Italy b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 14 January 2010 Accepted 5 February 2010
This study assessed whether a program based on microswitch and computer technology would enable three post-coma participants (adults) with motor and communication/ consciousness impairments to choose among environmental stimuli and request their repetition whenever they so desired. Within each session, 16 stimuli (12 preferred and 4 non-preferred) were scheduled for the participants. For each stimulus, a computer system provided a sample of a 3-s duration. During the intervention, participants’ responding (e.g., eye blinking and hand closure) in relation to a stimulus sample activated a microswitch and led the computer system to turn on that stimulus for 20 s. Participants’ lack of responding led the computer system to pause briefly and then present the next scheduled stimulus sample. When participants responded immediately after (i.e., within 6 s from) the end of a stimulus presentation, that stimulus was repeated. Intervention data showed response increases, which were very consistent for two participants and moderate for the third one. All participants asked for the repetition of preferred stimuli and showed minimal responding in relation to non-preferred stimuli. The results were discussed in light of their possible implications for new, person-centered rehabilitation programs for post-coma persons with multiple disabilities. ß 2010 Elsevier Ltd. All rights reserved.
Keywords: Microswitch Computer technology Post-coma Consciousness disorders Motor impairment Communication disabilities
1. Introduction The use of technological resources, such as microswitches, computer devices, and voice output communication aids (VOCAs), might be crucial to help post-coma persons with multiple (i.e., motor and communication/consciousness) impairments acquire control of environmental events through small and simple responses (Lancioni, O’Reilly, et al., 2008; Lancioni, O’Reilly, et al., 2009; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Megna, et al., 2009; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009). For example, a contact or
* Corresponding author at: Department of Psychology, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. E-mail address: [email protected] (G.E. Lancioni). 0891-4222/$ – see front matter ß 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ridd.2010.02.001
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pressure microswitch could enable a person to turn on a music source through a response such as a small hand-closure movement (Holburn, Nguyen, & Vietze, 2004; Lancioni, Olivetti Belardinelli, et al., 2008; Lancioni, O’Reilly, et al., 2009). Microswitch and computer technology could also serve as a means by which these persons become capable of choosing among various stimuli made available to them within their environment. For example, the person could be presented with brief samples (previews) of the stimuli (e.g., songs and video-clips), one every 30 s. In relation to each stimulus sample, the person could choose to listen to or view that stimulus (by activating a microswitch within a few seconds) or to bypass that stimulus (by not activating the microswitch) (cf. Lancioni, O’Reilly, Singh, Sigafoos, Didden, et al., 2006; Lim, Browder, & Bambara, 2001). The person could also be allowed to ask for the repetition of a specific stimulus after his or her first selection of it, if he or she so desires (i.e., if he or she finds it particularly enjoyable). This could be accomplished through a repetition of the selection response (i.e., microswitch activation) immediately after the end of the stimulus presentation (Lancioni, O’Reilly, et al., 2009; Lancioni, Singh, et al., 2006). A program including choice and opportunities for repetition requests, such as those mentioned above, was recently developed and tested with two persons with combinations of intellectual, motor and sensory disabilities (Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006). The results were encouraging, with both participants becoming relatively active in (a) selecting stimuli that they were considered to prefer and bypassing stimuli that they were considered to dislike (or to find unattractive), and (b) asking for the repetition of some of the former stimuli, probably the most preferred by them, thus indicating clear signs of purposeful choice behavior (cf. Cannella, O’Reilly, & Lancioni, 2005; Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009; Reyer & Sturmey, 2009; Sarimski, 2002; Singh et al., 2003). A program similar to that just described could also be conceived and realized with post-coma persons with multiple impairments. These persons too could be provided with the opportunity to (a) choose among a variety of stimuli made available to them through a computer system, and (b) ask for stimulus repetitions whenever they so desire, by using simple responses performed via microswitches linked to the computer system. Such an opportunity would enrich their stimulation input and allow them an active role (i.e., self-determination) with positive implications on a personal and social level (Algozzine, Browder, Karvonen, Test, & Wood, 2001; Felce & Perry, 1995; Holburn et al., 2004; Schalock et al., 2005; Wales & Waite, 2005). The purpose of this study was to set up and evaluate such a program with three post-coma participants (adults), who presented with extensive motor disabilities as well as communication and consciousness impairments. The program relied on microswitch and computer technology comparable to that described above (Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006). 2. Method 2.1. Participants The participants (Alfred, Edith, and Becky) were 22, 81, and 51 years old, respectively. Alfred had been involved in a road accident, resulting in multiple fractures of bilateral orbitals, legs and arms and severe brain injury with subsequent coma, about 2 years prior to the beginning of this study. A brain CT scan had shown cerebral edema and hypodense areas at the mesencephalic level and at the head of the caudate nucleus. Magnetic resonance imaging had shown diffuse axonal injury with white matter lesions of fronto-parietal, periventricular, splenium of the corpus callosum and mesencephalic regions. The coma condition lasted about 2 weeks and was then replaced by a vegetative state, which developed into a minimally conscious state after about 3 months. At the time of this study, he presented with spastic tetraparesis, reduced head control, minimal trunk control, urinary and fecal incontinence, apathy or oppositional behavior, and lack of speech. He was rated at the sixth level of the Rancho Levels of Cognitive Functioning (based on the confused-appropriate response dimension; see Hagen, 1998). His total score on the Disability Rating Scale was 19 (extremely severe disability) (Rappaport, Hall, Hopkins, Belleza, & Cope, 1982). Edith had suffered brainstem, cerebellar and temporal ischemic strokes about 3 months prior to the beginning of this study. The strokes led to a brief coma followed by a minimally conscious state, which remained largely unaltered over time. A brain CT scan had shown bilateral pontine, cerebellar and right temporo-basal ischemic lesions. At the time of this study, she presented with spastic tetraplegia with limited head control and no trunk control, and lack of speech. She showed fecal and urinary incontinence and used a gastrostomy tube for enteral nutrition. EEG recordings showed disorganized background activity with medium voltage and diffuse bihemispheric theta rhythm. Her total score on the Coma Recovery Scale-Revised was 11; with partial scores of 1 on the communication and oromotor/verbal subscales, 2 on the arousal, auditory and motor subscales, and 3 on the visual subscale (Kalmar & Giacino, 2005; Lombardi, Gatta, Sacco, Muratori, & Carolei, 2007). She was also rated at the third level of the Rancho Levels of Cognitive Functioning (i.e., localized response and total assistance; see Hagen, 1998). Becky had suffered a rupture of intracranial aneurysm of the left internal carotid artery, with subsequent extended subarachnoid hemorrhage and coma, about 4 months prior to the beginning of this study. A brain CT scan had shown tentorial, left perivermian, left capsule-lenticular and falx cerebri hemorrhage with a midline shift. Angiographic arterial embolization was immediately carried out and the hematoma was evacuated after left fronto-temporo-parietal decompressive craniotomy. The postoperative CT control showed new ischemic cortical–subcortical lesions in the left fronto-temporo-parietal regions. A ventriculo-peritoneal shunt was subsequently applied due to the appearance of posthemorrhagic hydrocephalus. The coma condition lasted about 3 weeks and was replaced by a vegetative state. This
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evolved into a minimally conscious state over a period of about 2 months. At the time of this study, Becky presented with right spastic hemiplegia, tendon–muscle retractions and limited control of head and trunk, and lack of speech. She showed fecal and urinary incontinence, used a gastrostomy tube for enteral nutrition, and was fitted with a tracheostomy tube. EEG recordings showed disorganized asymmetric alpha rhythm on the background activity, with low voltage and theta rhythm on the left temporal region. Her total score on the Coma Recovery Scale-Revised was 15; with partial scores of 1 on the communication subscale, 2 on the arousal, auditory and oromotor/verbal subscales, and 4 on the motor and visual subscales. Like Edith, she was rated at the third level of the Rancho Levels of Cognitive Functioning. 2.2. Responses, microswitches, and computer system The responses whereby the participants could choose and actively request the stimuli consisted of a hand pressure (Alfred), a double eyelid closure within a 2-s interval and/or a light head movement (Edith), and a hand-closure movement (Becky). The responses were already present (at low frequencies) in the participants’ repertoire, seemed fairly feasible for the participants to perform, and could be reliably matched with available or newly developed technology (Lancioni, O’Reilly, et al., 2008). The microswitch used for detecting hand pressure was a pressure sensor placed in front of Alfred. The microswitch for detecting the double eyelid closure was a simplified version of the optic sensor used in previous research (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009) and consisted of a light-emitting diode and lightdetection unit directed to Edith’s right eye and fixed on her forehead (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009). The microswitch used for detecting head movement was a touch sensor placed under (very close to) Edith’s chin. The microswitch used for detecting the hand-closure movement responses involved a twomembrane sensor embedded in a small box-like structure placed inside Becky’s left hand. The outer membrane of the sensor (i.e., the one facing the fingers) was a touch-sensitive layer and was activated by the simple contact of the fingers; the inner membrane was activated if Becky applied a pressure of about 20 g (Lancioni, O’Reilly, et al., 2008). The computer system included a set of 16 stimuli at each session. Twelve of the stimuli were considered preferred by the participants (e.g., pieces of songs or of people talking), while the other four were considered non-preferred (e.g., distorted sounds). The latter stimuli were expected to have a low selection rate compared to the preferred stimuli and, in such a way, to imply that there was real choice by the participants (Cannella et al., 2005; Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006; Sarimski, 2002). Preferred and non-preferred stimuli were automatically interspersed. For each stimulus, the computer system (a) presented a sample of 3 s combining it with verbal expressions such as ‘‘and this?’’ or ‘‘want it?’’, (b) recorded the participant’s responding to the sample, that is, microswitch activation or lack thereof within a 6-s interval, (c) turned on the stimulus matching the sample for 20 s in case of microswitch activation (except in the baseline phase; see below), and (d) repeated a 20-s presentation of a stimulus if an active request occurred within 6 s from the end of its previous presentation. A pause interval of 6–10 s occurred between the end of a stimulus episode or the lack of responding to a stimulus sample and the presentation of the next stimulus sample. 2.3. Selection of stimuli Interviews with family members, observations, and a brief screening for stimulus preference were used to select presumably preferred stimuli for the study. The screening involved the presentation of some of the stimuli identified through interviews and observations (e.g., a selection of music, video and song clips out of the variety of music, video and song stimuli identified) 10–20 nonconsecutive times, for about 10 s each time (Crawford & Schuster, 1993). A stimulus category (e.g., instrumental music) was retained for the study if the participant was apparently alerting, orienting or smiling to the stimulus clips of that category in about or more than 50% of the screening presentations (Lancioni, Singh, O’Reilly, Sigafoos, Buonocunto, Sacco, Colonna, Navarro, Oliva, et al., 2009). The stimuli selected as preferred included, among others, popular songs, instrumental music, family members and friends talking, and video-clips of comic gags or of family celebrations supplemented with verbal comments and music. The stimuli selected as non-preferred, based on their presumed tediousness or annoyance, consisted of distorted sounds and voices. The stimuli were arranged into four (Edith) or five (Becky and Alfred) sets, each of which included 12 preferred and 4 non-preferred stimuli (see above). The sets were rotated across sessions. 2.4. Experimental conditions The study was carried out according to a non-concurrent multiple baseline design across participants (Barlow, Nock, & Hersen, 2009). The data from the sessions (i.e., microswitch activations/responses, stimuli selected, and session duration) were automatically recorded through the computer system. Sessions typically occurred once or twice a day and lasted until all stimulus samples had been presented or a period of about 60 min had elapsed, whichever came first. 2.4.1. Baseline The baseline included 5, 8, and 12 sessions for the three participants, respectively. The computer system presented the stimulus samples as described above. However, microswitch activation by the participants did not turn on the stimuli (see above). Prior to each baseline session, the participants were physically prompted to activate their microswitches in relation
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Fig. 1. Data for Alfred. The upper graph shows mean frequencies of preferred stimuli selected per session over blocks of two sessions. Only the last point of the baseline represents a single session. The lower graph shows the mean frequencies of responses per session for the preferred stimuli selected within the same blocks of sessions.
to a sample of a preferred stimulus but no consequences occurred. The same prompting could be repeated during the session if the participants failed to respond to five or six stimulus samples in succession. Again, no consequences occurred. 2.4.2. Intervention The intervention included 68, 75, and 63 sessions for the three participants, respectively. Procedural conditions were as in baseline except that microswitch activation within 6 s from the presentation of a stimulus sample or from the end of a 20 s stimulus episode led to the occurrence or the repetition of the stimulus for 20 s. The intervention phase was preceded by three to six introduction sessions in which participants were prompted to activate their microswitches in relation to samples of the preferred stimuli and, also, following the full presentation of some of those stimuli. Stimulus consequences occurred as during regular intervention sessions. 3. Results Figs. 1–3 show the participants’ performance. The upper graph of each figure shows the mean frequency of preferred stimuli selected per session over blocks of two sessions. Single sessions may be represented by the last point of baseline and intervention phases. The lower graph shows the mean frequencies of responses (first choice plus repetition requests) per session that occurred across the same blocks of sessions. During the baseline phase, the participants’ mean frequencies of
Fig. 2. Data for Edith plotted as in Fig. 1.
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Fig. 3. Data for Becky plotted as in Fig. 1.
preferred stimuli selected were about or below three (Edith and Alfred) or below five (Becky). The mean frequencies of responses corresponded to the stimuli selected, as repetition requests were not possible during baseline. During the intervention phase, the participants’ mean frequencies of preferred stimuli selected were about eight, eight, and nine, respectively. Their mean frequencies of responses were about 116, 18, and 94, with means exceeding 14, 2, and 10 responses per stimulus, respectively. The high frequencies of Alfred and Becky involved a rapid responding surge and a more gradual slope, respectively. The sessions of these two participants were frequently interrupted after a period of about 60 min had elapsed. Selection of non-preferred stimuli (not reported in the figures) occurred at fairly low rates (Edith and Becky) or extremely rarely (Alfred). Moreover, the frequency of responses for these stimuli was typically one (i.e., with no repetition requests). 4. Discussion These findings support and extend the data previously obtained with participants with no coma recovery history (Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006). In fact, the post-coma persons involved in the present study were relatively inactive during the baseline and moderately (Edith) or greatly (Becky and Alfred) active during the intervention period. The frequencies of preferred stimuli selected and the number of responses provided for those stimuli appeared rather high compared to the sporadic responding on non-preferred stimuli and suggested that the participants had purposeful choice behavior (cf. Cannella et al., 2005; Lancioni, O’Reilly, Singh, Sigafoos, Oliva, et al., 2006; Sarimski, 2002; Singh et al., 2003; Van Acker & Grant, 1995). The high level of responding expressed by Becky and Alfred might be linked to two main issues, namely, their relatively positive condition/status and their reportedly high enjoyment of the stimuli available. With regard to the status, Alfred seemed to be at the level in which a patient is rediscovering/recapturing the function of objects and stimuli in general (Hagen, 1998). Becky was still diagnosed in a condition of minimal consciousness but showed protracted, attentive wakefulness. Both participants seemed easily attracted by the preferred stimuli available in the sessions. Their interest in and enjoyment of those stimuli were actually confirmed by (a) the high concentrations of repetition requests among those stimuli (with informal reports suggesting high request levels on, among others, special songs and comic gags, and on grandchildren and friends’ voices and musical items, respectively), and (b) the frequent (informal) reports of indices of happiness, such as smiles, accompanying the sessions (Davis, Young, Cherry, Dahman, & Rehfeldt, 2004; Kazdin, 2001; Spevack, Martin, Hiebert, Yu, & Martin, 2005). The modest level of responding expressed by Edith might have been related to (a) a more serious condition, which placed her in the lower-central section of the minimally conscious state, (b) lower levels and shorter periods of wakefulness with seemingly fluctuating attention, and (c) probably a less obvious (intense) preference for the stimuli available with a reduced (or only momentary) enjoyment of their occurrence. It is noteworthy that even in this modest overall condition, Edith could ask for the repetition of some of the stimuli and generally did not select the stimuli deemed to be non-preferred, thus showing positive engagement and presumably purposeful choice behavior (Browder, Cooper, & Lim, 1998; Cannella et al., 2005). The microswitch and computer technology used in this study may be considered critical for the realization of the intervention program reported and for its overall positive outcome (Hourcade, Pilotte, West, & Parette, 2004). The program can be viewed as a relevant resource for post-coma persons with motor and communication/consciousness impairments because (a) it appears fairly easy to implement for professionals and caregivers alike, and (b) it may be
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used on a daily basis to enhance the participant’s opportunities for stimulation (including exposure to new stimuli for which no preference value is known) and promote alertness, self-determination and, probably, a beneficial level of enjoyment. All these aspects are important from a practical and rehabilitation standpoint as well as in terms of personal fulfillment, dignity, and quality of life (Cavalier & Brown, 1998; Felce & Perry, 1995; Lachapelle et al., 2005; Petry, Maes, & Vlaskamp, 2005; Wehmeyer, 2005). In conclusion, the results provide encouraging evidence on the possibility of enabling individuals with multiple disabilities following acquired brain injury to choose among environmental stimuli and to request the repetition of presumably the most enjoyable ones. New research may help to determine the generality of these results and assess ways of devising and upgrading technology according to the persons’ status (Baker & Moon, 2008). 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