Objective: To assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months. Methods: Of 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28-79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life. Results: Over subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use. Conclusion: The Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.

Tecnologias assistivas computacionais, ou Alta Tecnologia Assistiva (ATA) não podem prescindir de customização para atender efetivamente pessoas com deficiência nas atividades de vida diária e em terapia de reabilitação. Hoje, tais tecnologias são ofertadas de forma padronizada, cabendo aos terapeutas adaptarem-nas para que seus pacientes possam usá-las. O design participativo (DP), como metodologia de envolvimento ativo do usuário no processo de projeto, adequa-se bem à ideia de customização de ATAs, permitindo a participação ativa do usuário com deficiência como co-designer da sua solução. Apesar disso, são raros os estudos que apresentam recomendações para o DP incluindo esses usuários. Quando se considera métodos de DP para incluir pessoas com deficiência, independentemente da deficiência apresentada, nenhum trabalho de pesquisa foi localizado. Visando preencher essa lacuna, esta pesquisa tem o objetivo de propor o PD4CAT Participatory Design for Customized Assistive Technology, método que objetiva auxiliar equipes multidisciplinares a conceberem soluções computacionais customizadas utilizando o DP para o envolvimento ativo da equipe - que inclui a pessoa com deficiência, seus terapeutas e cuidadores - no ciclo de design e desenvolvimento. A metodologia adotada neste trabalho para obter a proposta do PD4CAT foi a pesquisa-ação, em dois ciclos que inseriram os pesquisadores em instituições de reabilitação. Neste processo, foram realizados dois estudos de caso de desenvolvimento de ATAs personalizadas para dois pacientes com paralisia cerebral, com deficiências motora e verbal, sendo um adulto de quarenta e seis anos (M) e, uma criança de quatro anos (MI). Resultaram deste processo as diretrizes que compõem o PD4CAT, bem como as soluções em TAs. / Customization is essential for Computer Assistive Technologies, or High Assistive Technology (HAT), to effectively meet the needs of people with disabilities in their daily activities and in rehabilitation therapy. These technologies are currently provided in a standardized way, and therapists have to adapt them so that their patients can use them. Participatory design (PD), as a methodology that actively involves the user in the design process, is very adequate to customize HATs, allowing active participation by users with impairments as co-designers of their solutions. However, few are the studies presenting recommendations to PD including these users. No research work was spotted considering PD methods to include people with disabilities, independently of their impairment. Aiming to fill this gap, this research proposes PD4CAT Participatory Design for Customized Assistive Technology, a method to aid multidisciplinary teams to conceive customized computer solutions using PD for actively involving the team - which includes persons with impairments, their therapists and caretakers in the design and development cycle. The methodology adopted in this work for obtaining the PD4CAT proposal was the research-action, in two cycles that inserted the researchers in rehabilitation institutions. In the process, two case studies were conducted for developing customized HATs for two patients with cerebral palsy, with motor and verbal impairments, one being a forty-six-year old adult (M) and a four-year-old child (MI). This process resulted in the guidelines composing PD4CAT, as well as the AT solutions.

Tecnologias assistivas computacionais, ou Alta Tecnologia Assistiva (ATA) não podem prescindir de customização para atender efetivamente pessoas com deficiência nas atividades de vida diária e em terapia de reabilitação. Hoje, tais tecnologias são ofertadas de forma padronizada, cabendo aos terapeutas adaptarem-nas para que seus pacientes possam usá-las. O design participativo (DP), como metodologia de envolvimento ativo do usuário no processo de projeto, adequa-se bem à ideia de customização de ATAs, permitindo a participação ativa do usuário com deficiência como co-designer da sua solução. Apesar disso, são raros os estudos que apresentam recomendações para o DP incluindo esses usuários. Quando se considera métodos de DP para incluir pessoas com deficiência, independentemente da deficiência apresentada, nenhum trabalho de pesquisa foi localizado. Visando preencher essa lacuna, esta pesquisa tem o objetivo de propor o PD4CAT Participatory Design for Customized Assistive Technology, método que objetiva auxiliar equipes multidisciplinares a conceberem soluções computacionais customizadas utilizando o DP para o envolvimento ativo da equipe - que inclui a pessoa com deficiência, seus terapeutas e cuidadores - no ciclo de design e desenvolvimento. A metodologia adotada neste trabalho para obter a proposta do PD4CAT foi a pesquisa-ação, em dois ciclos que inseriram os pesquisadores em instituições de reabilitação. Neste processo, foram realizados dois estudos de caso de desenvolvimento de ATAs personalizadas para dois pacientes com paralisia cerebral, com deficiências motora e verbal, sendo um adulto de quarenta e seis anos (M) e, uma criança de quatro anos (MI). Resultaram deste processo as diretrizes que compõem o PD4CAT, bem como as soluções em TAs. / Customization is essential for Computer Assistive Technologies, or High Assistive Technology (HAT), to effectively meet the needs of people with disabilities in their daily activities and in rehabilitation therapy. These technologies are currently provided in a standardized way, and therapists have to adapt them so that their patients can use them. Participatory design (PD), as a methodology that actively involves the user in the design process, is very adequate to customize HATs, allowing active participation by users with impairments as co-designers of their solutions. However, few are the studies presenting recommendations to PD including these users. No research work was spotted considering PD methods to include people with disabilities, independently of their impairment. Aiming to fill this gap, this research proposes PD4CAT Participatory Design for Customized Assistive Technology, a method to aid multidisciplinary teams to conceive customized computer solutions using PD for actively involving the team - which includes persons with impairments, their therapists and caretakers in the design and development cycle. The methodology adopted in this work for obtaining the PD4CAT proposal was the research-action, in two cycles that inserted the researchers in rehabilitation institutions. In the process, two case studies were conducted for developing customized HATs for two patients with cerebral palsy, with motor and verbal impairments, one being a forty-six-year old adult (M) and a four-year-old child (MI). This process resulted in the guidelines composing PD4CAT, as well as the AT solutions.