Diversified occupation and communication program versions for persons with acquired neurological damage and multiple disabilities

Introduction

Persons with acquired neurological (i.e. brain or spinal cord) damage and extensive motor impairment combined with cognitive-functional and/or language disabilities may be largely dependent on caregivers for their occupational engagements and for all or much of their communication requirements [1–5]. This dependence has broad negative implications in terms of the opportunities available, personal self-determination/initiative and choice, as well as social status [3, 6–8].

Any possibility of alleviating this situation and promoting the persons’ active involvement in starting/choosing occupations and communication events may depend on the availability of a program supported by basic technology [9–12]. Such technology would be expected to provide the persons with: (a) occupation and communication options that match their interests and overall skills; and (b) an opportunity to access those options through minimal responses available in their repertoire, thus bypassing their motor impairment [12–18].

Recent studies have demonstrated the possibility of arranging such a technology-aided program and enabling persons with acquired neurological damage and multiple disabilities to achieve independent, functional engagement [16, 19–21]. For example, Lancioni et al. [21] set up a program to enable a man with cervical spinal cord injury and a post-coma man with complex multiple disabilities to access songs and videos, make requests, and manage text messages and phone calls. These options were presented on a computer screen and activated through a small pressure microswitch/sensor by the man with spinal cord injury and light screen touches by the post-coma man. To help the latter participant who had no vocal utterances with requests and phone calls, a series of words and phrases were made available on the computer screen that could be activated with the aforementioned screen touches. Both participants succeeded in using the program.

While the results of the aforementioned study and others in the area (also including persons with amyotrophic lateral sclerosis) [19, 21–23] can be considered encouraging, the number of participants involved is rather small and studies with additional participants are needed to extend the evidence available. New studies may need to be conceived as systematic replication efforts, that is, efforts in which variations are introduced in the general program conditions [24]. In fact, new participants may present important differences in motor and functional skills and in interests among themselves and in relation to the participants of earlier studies, and thus require program variations (i.e. personal adaptations). This study extended the assessment of the aforementioned technology- aided program for supporting independent occupation and communication. Seven new participants with acquired neurological damage and multiple disabilities were involved. The program was diversified according to the participants’ characteristics and interests, with the consequence that multiple program versions were set up and assessed. In practice, the program versions differed in terms of the occupation and communication options available as well as of the responses and microswitches employed to access those options [17, 21, 23, 25].

Methods

Results

The three panels of Figure 1 summarize the data for Lucie, Susan, and Kathryn, respectively. The four panels of Figure 2 summarize the data for Claude, Desmond, Stan, and Morris, respectively. The bars in their entirety represent mean percentages of session time spent in independently started option-related engagement over blocks of sessions. The light- and dark-gray sections of the bars represent engagement with occupation options (e.g. songs and television) and communication options (e.g. statements/requests, memos, telephone calls, and writing), respectively. The number of sessions included in each block/bar is indicated by the numeral above it. During baseline, the mean percentages of the session time with independently started engagement were zero. During intervention, those mean percentages were between about 60 (Desmond) and 90 (Stan). The percentages of time spent in occupation-related options represented more than half of the total for all participants except Morris.

Figure 1:

The three panels summarize the data for Lucie, Susan, and Kathryn, respectively. The bars in their entirety represent mean percentages of session time engagement over blocks of sessions. The light- and dark-gray sections of the bars represent engagement with occupation and communication options, respectively. The number of sessions included in each block/bar is indicated by the numeral above it.

Figure 2:

The four panels summarize the data for Claude, Desmond, Stan, and Morris, respectively, which are plotted as in Figure 1.

Discussion

The participants successfully used the individualized versions of the program and, accordingly, managed independent occupations and communication. These data corroborate and extend previous findings in the area [6, 21–23]. The individualized program versions used in the present study also included options (e.g. message replies), combinations of options (e.g. news, television, and message replies), and responses (e.g. lip movements), which had not been employed before. In light of the above, a few considerations may be put forward.

First, the most basic consideration is that a simple technology-aided program can be profitably used to support occupation and communication in people with acquired neurological damage and severe multiple disabilities. The program’s suitability and applicability are due to the fact that such a program can be adapted to the participants. Variations/adaptations are needed (and were arranged in this study) with regard to both the responses/microswitches and the options. With regard to responses, for example, Lucie, Kathryn and Claude could rely on a small hand-closure response, which was not available for Desmond and Stan who could instead use lip movements and a small head movement, respectively. Each of these different responses were reliably monitored (and thus the participant could use it effectively) through basic pressure sensors inside the hand or different arrangements of optic sensors. With regard to the program options, it may be noteworthy that only two participants used the same combination (i.e. Lucie and Susan).

Second, the participants’ successful use of the program (i.e. their maintenance of a relatively consistent engagement throughout the intervention sessions and informally reported eagerness to start those sessions) could be taken as a sign of their satisfaction with the program. In retrospect, one could argue that this is not really surprising, as the program allowed the participants to access preferred options with relatively low levels of difficulty (i.e. using microswitches that required simple responses) [25, 27–29]. In addition to being effective for the participants, the program may be considered economically reasonable (i.e. the estimated costs of the different versions vary between 1500 and 3000 US dollars) [30–33]. A program with the aforementioned characteristics might be viewed as a practical resource [34, 35].

Third, this study presents two main limitations that need to be underlined. The first limitation is the number of participants included. Adding seven new participants to the relatively small number of participants involved in previous studies (albeit a very useful step in extending earlier evidence) does not allow general conclusions. Involving larger numbers of participants may help identify additional options and functional combinations thereof and possibly new microswitches [22, 24, 25, 36–39]. Among the new options to evaluate, one could include video-telephone calls and popular games [9, 18, 19]. A second limitation is the relatively unsophisticated software used in the program. Among the efforts to improve this aspect, one could envisage developing solutions to enable the computer system to automatically recruit brief newspaper articles within the participant’s interest areas (i.e. articles that would be read out when the participant chooses for such an option).

In conclusion, the results show that participants with multiple disabilities due to acquired neurological damage could benefit from individualized occupation and communication program versions relying on basic technology. New research would need to: (a) remedy the limitations of the present study and also (b) assess the participants’ satisfaction with the program arrangements (i.e. combinations of options and microswitches used for them); and (c) gauge family and staff’s opinions about the impact and adequacy of the program as well as their suggestions for program extensions and improvements [40–42].