technology aided programs for persons with severe profound and multiple disabilities a selective review

This paper represents a brief, selective review of technology-aided programs for persons with severe/profound and multiple disabilities. Specifically, the paper provides detailed summaries of a number of illustrative studies conducted by these authors for the assessment of (a) microswitch-based programs aimed at promoting response engagement and control of environmental stimulation, (b) speech-generating devices and computer-aided programs directed at promoting communication and stimulus choice, (c) orientation technology solutions for promoting indoor travel, and (d) visual- and verbal-instruction technology for promoting performance of complex, multi-step tasks. The studies included in the review provide a specific picture of the technological instruments adopted within the programs, of the participants involved, and of the outcomes obtained. Questions of practical importance left unanswered by those studies and others in the field are also discussed as possible targets of new research

A Behavioral Approach to Treatment and Assessment of People with Disorders of Consciousness: The Response-contingent Stimulation Strategy

Response-contingent stimulation is a behavioral strategy used to improve the situation of patients with disorders of consciousness. Such strategy involves the presentation of brief periods (e.g., 10 to 15 s) of stimulation considered preferred by the patients, contingent on (immediately after) the emission of specific patients' responses. The aim is to help the patients learn the link between their responding and the preferred stimulation and thus learn to use their responding to access the stimulation in a self-determined/independent manner. Achieving these goals is considered important for the patients' recovery process and thus the response-contingent stimulation strategy that promotes such an achievement can be considered a valuable treatment approach. The same strategy combined with the use of periods of non-contingent stimulation (i.e., stimulation delivered independent of responding) may also serve as an assessment supplement with patients with apparent unresponsive wakefulness. The patients' increase in responding during the response-contingent stimulation and decline in responding during the non-contingent stimulation could be taken as a sign of discrimination between conditions, and possibly a sign of awareness of the immediate environmental situation, compatible with a diagnosis of minimally conscious state. This paper analyzes a number of studies aimed at using the response-contingent stimulation as a treatment strategy and a number of studies aimed at combining response-contingent stimulation with non-contingent stimulation for treatment and assessment purposes. The results of the studies are discussed in terms of the effectiveness, accessibility and affordability of the strategy. The need for new research (i.e., replication studies) is also pointed out

Educational Priorities for Children with Cri-Du-Chat Syndrome

There are few data on the educational needs of children with cri-du-chat syndrome: a neurodevelopmental disorder that affects learning and development. We therefore designed an Internet survey to identify parents’ educational priorities in relation to children’s level of need/ability. The survey listed 54 skills/behaviors (e.g., toileting, expresses wants and needs, and tantrums) representing 10 adaptive behavior domains (e.g., self-care, communication, and problem behavior). Parents rated their child’s current level of ability/performance with respect to each skill/behavior and indicated the extent to which training/treatment was a priority. Fifty-four surveys were completed during the 3-month data collection period. Parents identified nine high priority skills/behaviors. Results supported the view that parent priorities are often based on the child’s deficits and emergent skills, rather than on child strengths. Implications for educational practice include the need for competence to develop high priority skills/behaviors and the value of assessing children’s deficits and emergent skills to inform the content of individualized education plans

Technology-Based Behavioral Interventions for Daily Activities and Supported Ambulation in People With Alzheimer's Disease:

Objectives:These 2 studies evaluated technology-based behavioral interventions for promoting daily activities and supported ambulation in people with mild-to-moderate and moderate-to-severe Alzheimer's disease, respectively.Methods:Study 1 included 8 participants who were taught to start and carry out daily activities on their own using a tablet or smartphone device, which provided activity reminders, step instructions, and praise. Study 2 included 9 participants who were taught to engage in brief periods of ambulation using a walker combined with a tilt microswitch and a notebook computer, which monitored step responses and provided stimulation and prompts.Results:The participants of study 1 succeeded in starting the activities independently and carrying them out accurately. The participants of study 2 largely increased their ambulation levels and also showed signs of positive involvement (eg, smiles and verbalizations).Conclusion:The aforementioned technology-based interventions may represent practical means for supporting people with Alzheimer's disease

Persons with moderate Alzheimer's disease improve activities and mood via instruction technology.

Background: Three studies assessed the (a) effectiveness of verbal instructions presented via technology in helping persons with moderate Alzheimer's disease perform daily activities and (b) impact of activity engagement on mood. Methods: The 3 studies targeted coffee preparation with 2 women, use of make-up with 2 women, and use of make-up and tea preparation with 3 women. Intervention effects on activity performance were assessed through nonconcurrent multiple baseline designs across participants or multiple baseline designs across activities. The impact of activity on mood was assessed by recording indices of happiness during activity trials and parallel nonactivity periods. Results: Verbal instructions presented via technology were effective in helping all participants perform the target activities. The participants also showed mood improvement (ie, increases in indices of happiness) during the activity. Conclusion: These results suggest that the approach reported may be a useful strategy for helping persons with Alzheimer's disease

A microswitch-aided program to enable people with extensive multiple disabilities to control environmental stimulation through different responses

ObjectivesThis study assessed whether a simple technology-aided program (i.e., a program involving the use of microswitches linked to a smartphone) could be set up to enable people with motor, sensory and intellectual disabilities to control preferred environmental stimulation through two different response movements.MethodsTen participants were involved in the study. Each of them was exposed to an ABAB design, in which A represented baseline phases without the program and B intervention phases with the use of the program. The study assessed whether the participants (a) had significant increases of each of the two response movements available and/or showed response variability across sessions and over time and (b) had signs of satisfaction/happiness during the study sessions, in connection with their stimulation access and control.ResultsThe program was effective in increasing the participants' responding and consequently their self-regulated stimulation input. Half of the participants showed a significant increase of both responses available from the first intervention phase. Other participants seemed to focus more on one of the two responses. Even so, they tended to have occasionally high performance frequencies also with regard to their non-dominant (not significantly increased) response. Finally, all participants showed clear signs of satisfaction/happiness during the intervention sessions.ConclusionsThe program represents a potentially useful approach for enabling people with extensive multiple disabilities to self-regulate their access to preferred environmental stimulation and improve their mood

Changing the perspective on early development of Rett syndrome

We delineated the achievement of early speech-language milestones in 15 young children with Rett syndrome (MECP2 positive) in the first two years of life using retrospective video analysis. By contrast to the commonly accepted concept that these children are normal in the pre-regression period, we found markedly atypical development of speech-language capacities, suggesting a paradigm shift in the pathogenesis of Rett syndrome and a possible approach to its early detection

Open video data sharing in developmental and behavioural science

Video recording is a widely used method for documenting infant and child behaviours in research and clinical practice. Video data has rarely been shared due to ethical concerns of confidentiality, although the need of shared large-scaled datasets remains increasing. This demand is even more imperative when data-driven computer-based approaches are involved, such as screening tools to complement clinical assessments. To share data while abiding by privacy protection rules, a critical question arises whether efforts at data de-identification reduce data utility? We addressed this question by showcasing the Prechtl's general movements assessment (GMA), an established and globally practised video-based diagnostic tool in early infancy for detecting neurological deficits, such as cerebral palsy. To date, no shared expert-annotated large data repositories for infant movement analyses exist. Such datasets would massively benefit training and recalibration of human assessors and the development of computer-based approaches. In the current study, sequences from a prospective longitudinal infant cohort with a total of 19451 available general movements video snippets were randomly selected for human clinical reasoning and computer-based analysis. We demonstrated for the first time that pseudonymisation by face-blurring video recordings is a viable approach. The video redaction did not affect classification accuracy for either human assessors or computer vision methods, suggesting an adequate and easy-to-apply solution for sharing movement video data. We call for further explorations into efficient and privacy rule-conforming approaches for deidentifying video data in scientific and clinical fields beyond movement assessments. These approaches shall enable sharing and merging stand-alone video datasets into large data pools to advance science and public health