Children with cerebral palsy and powerful whole body extensor spasms find sitting in a rigid seat uncomfortable and sometimes painful due to the large forces they apply to their constraints. They are usually unable to speak and communication is difficult. The spasms affect every aspect of their lives. This thesis describes the genesis of a new functional dynamic seat for children with severe whole body extensor spasms, and the novel method used to design it. This novel seat technology is known as ‘Whole Body Dynamic Seating’. The thesis describes the clinical need this seat addresses, and the design and technology context in which this research takes place. The user evaluation, observation, measurement, analysis and reasoning that led to a successful seat design are described in detail. Children with cerebral palsy sometimes have whole body spasms that mean they cannot be seated in conventional static seating that positions a child in a fixed posture. For this research the children were classified as functioning at Chailey Sitting Ability Level 1 and Gross Motor Functional Classification System Level V. Such children spend much of their time being held by a person, or lying on a mat, bed or pad. This results in difficulty with social engagement and physical functioning, particularly in school. This research created a seat that such children could sit in, providing a comfortable and functional seat for use in a home or school classroom environment. This seat was designed with the direct and essential involvement of disabled children, their parents, therapists, teachers and carers. The work is part of a larger programme of research into seating and support technology that will enhance a child’s ability to gain functional movement and communication skills that can be employed to enable the child’s free self expression and social participation. The research investigated means of supporting children with whole body extensor spasms through a progressive iterative method utilizing direct user evaluation of a series of prototypes incrementing in complexity and fidelity towards a fully functional physical seat. An iterative method was used to design, build and evaluate three dynamic seats. This method incorporated two new approaches to prototyping developed for the research programme in response to difficulties encountered in designing dynamic systems for children with highly complex neuromotor disability. Soft and Semi-soft prototyping and evaluation methods provided essential feedback on dynamic seating concepts that guided proposed solutions, without requiring costly and time-consuming manufacture. Video was used to create a record of the children’s movements and responses for subsequent analysis. Instrumentation was built into the seats to enable direct objective measurement of the reaction forces and seat movement caused by extensor spasms. This thesis presents several unique features created through this research programme: 1. Independent and virtually hinged anatomical dynamic thigh supports; 2. Independent anatomical dynamic foot supports; 3. A virtually hinged dynamic back support; 4. An anatomical dynamic head support concept. The final Whole Body Dynamic Seat was child-centred in its functionality and aesthetic design, and was favourably commented upon by parents, children and school staff. Use of the new dynamic seating by three children (including one from a previous work programme) showed that children with severe whole body extensor spasms can be seated comfortably. The children also demonstrated gains in physical and social function as a result of using the dynamic seats. The two fully independent dynamic seats made advances in comfort over static seating for children with whole body extensor spasms. One of the children especially liked the seat and resisted being put back into his usual seating. An adult with severe cerebral palsy and extensor spasms evaluated a dynamic foot support concept and reported very significant reductions in spasticity and pain, and gains in physical function. The Whole Body Dynamic Seats showed gains in postural symmetry and in hand and head function over the usual static seats when used by the children with spasms. These gains were reported by staff during long term evaluations and measured specifically during the final evaluation. Two children learned to control the movement of seats in which they were sat, and were able to control their posture and use that control to carry out functions such as switch pressing. Such learning through the use of dynamic seating by children with severe dystonic cerebral palsy and whole body extensor spasms has not previously been documented. The seats did not just affect the children - school staff were affected too. School staff working around the children in the dynamic seats were observed to be more inclusive towards the children, and to expect more interaction from them. The ability of the children to move altered staff expectations of their ability to participate and communicate. This new seating has improved the quality of life of the children that use it. Future implementation of this technology in commercially produced seating offers the possibility of similar gains to many more severely disabled children who are currently less comfortable and less functional than they need to be.

Esse estudo objetivou avaliar a influência de fármacos anticonvulsivantes no bruxismo de crianças com paralisia cerebral (PC) estudando uma amostra constituída de 203 indivíduos, divididos em três grupos pareados, sendo dois grupos de crianças PC (GE1 e GE2) e um grupo controle (GC), composto por crianças normoreativas. O primeiro constituído por crianças PC que não faziam uso de fármacos anticonvulsivantes (GE1) e o segundo com crianças que faziam uso destes fármacos regularmente (GE2). A avaliação de bruxismo foi realizada mediante questionário aplicado aos cuidadores. Os principais grupos farmacológicos encontrados no GE2 foram: valproato, barbitúrico, benzodiazepínicos e carbamazepina. Os GE1 e GE2 não diferiram entre si quanto à freqüência de bruxismo, mas ambos diferiram significantemente do GC (p<0.005). Não foram observadas diferenças estatisticamente significante entre os grupos quanto a presença ou ausência do bruxismo quando comparadas as faixas etárias e o momento de ocorrência: sono, vigília e sono e vigília. Analisando as crianças do GE2, as que fazem uso de barbitúrico apresentaram frequencia significantemente maior de bruxismo do que as que fazem uso dos demais fármacos, que não diferem entre si. Quanto analisada a presença do bruxismo exclusivamente durante o sono, os indivíduos do grupo dos benzodiazepínicos apresentaram menor freqüência quando comparados ao grupo do barbitúrico (p=0,01). Não existe diferença significativa entre a freqüência de bruxismo entre as crianças PC que fazem e as que não fazem uso de anticonvulsivantes. As crianças que usavam barbitúrico apresentaram maior freqüência de bruxismo que as que usavam valproato, benzodiazepínicos e carbamazepina. / The purpose of this study was to investigate the influence of anticonvulsant drugs on bruxism in children with cerebral palsy (CP), using a sample of 203 individuals who were divided into three paired groups: two groups of children with CP (EG1 and EG2) and a control group (CG) composed of normal children. The first group was constituted by children with CP who did not take anticonvulsant drugs (EG1) while children of the second group (EG2) took such medication on a regular basis. Bruxism assessment was conducted through the use of a questionnaire directed to the caretakers. The main pharmacological groups used in EG2 were: valproate, barbituric, benzodiazepine, and carbamazepine. EG1 and EG2 did not differ from each other in relation to frequency of bruxism but were both statistically significantly different from the CG (p<0.005). No statistical differences were observed between the groups regarding presence of absence of bruxism in relation to age groups and moments of occurrence of bruxism (during sleep, awake or during sleep and awake). Children from EG2 who took barbituric anticonvulsants presented with a higher frequency of bruxism than those who took the other types of medication studied, which had similar results. When the presence of bruxism exclusively during sleep was investigated, individuals from the benzodiazepine group had a lower frequency of bruxism compared to those of the barbituric group (p=0.01). There were no statistically significant differences in the frequency of occurrence of bruxism in children with CP who take and who do not take anticonvulsant drugs. Children taking barbituric drugs presented with a higher frequency of bruxism than those who took valproate, benzodiazepine and carbamazepine.

As habilidades manuais podem estar prejudicadas na paralisia cerebral (PC), interferindo nas atividades funcionais do cotidiano da criança, como alimentar-se, ir ao banheiro, brincar, o que ocasiona impacto negativo na vida dela e da família. Objetivo: elaborar, aplicar e analisar um protocolo de avaliação da função manual de crianças com PC, de 0 a 7 anos e 11 meses de idade. Método: estudo dividido em 2 etapas - 1) planejamento: definição de objetivo e população alvo, realização de revisão da literatura sobre instrumentos já existentes, tipos de itens e formato de instrumento, 2) construção: construção I -desenvolvimento dos itens, seleção dos instrumentos utilizados como base do protocolo, seleção dos itens relevantes por faixa etária, análise dos itens e adequação do protocolo; projeto piloto - aplicação do protocolo junto a 36 crianças de 0 a 7 anos e 11 meses, sendo 18 com PC e 18 com desenvolvimento típico (DT), análise dos itens e adequação do protocolo; construção II - validação de conteúdo por profissionais/pesquisadores experientes (experts) na área, elaboração e envio do questionário aos juízes especialistas, revisão dos itens (inclusão e exclusão), análise das avaliações dos especialistas e adequação do protocolo. Resultados: foram selecionados 238 itens, sendo 38 itens da Escala Lúdica Pré Escolar de Knox (ELPKR), 126 do Inventário Portage Operacionalizado (IPO), 32 do Teste de Triagem de Desenvolvimento de Denver II (TTDD-R), 38 do Inventário de Avaliação Pediátrica de Incapacidade (PEDI) e 4 do Manual de Avaliação Motora - Escala de Desenvolvimento Motor (MAM-EDM). Todos os itens foram revisados. Realizou-se o agrupamento de 161 itens recorrentes, totalizando 120 itens, os quais foram aplicados em crianças com PC e DT. Após a aplicação, em nova análise do protocolo, foram agrupados 6 itens semelhantes, divididos 2 e excluídos 7, totalizando 109 itens, os quais foram enviados em forma de questionário para os juízes especialistas. Na sequência, as avaliações dos experts foram analisadas e, então, 3 itens foram agrupados, 1 item subdividido e 7 itens excluídos, chegando-se a um protocolo final com 101 itens, divididos em 8 faixas etárias: de 0 a 5 meses, de 6 meses a 11 meses, de 1 ano a 1 ano e 11 meses e, sucessivamente, na sequência anual até de 4 anos a 4 anos e 11 meses; em seguida há uma faixa etária de 5 anos a 6 anos e 11 meses e, após, a faixa etária de 7 anos a 7 anos e 11 meses. O resultado foi então denominado de Avaliação Manual Infantil Geral e Objetiva - AMIGO. Foram observadas 2 crianças de cada grupo em cada faixa etária, sendo que as crianças com DT apresentaram, no geral, melhores pontuações quando comparadas às crianças com PC da mesma faixa etária. Considerações finais: a avaliação AMIGO foi considerada válida e alcançou seu objetivo principal. Ainda está, porém, em processo de construção e, em estudos futuros, passará por mais duas fases de construção, sendo elas a fase III - avaliação quantitativa e a fase IV - validação, para que possa ser considerada totalmente válida e segura a sua utilização na prática clínica e na pesquisa científica. / Manual skills may be affected in cerebral palsy (CP), interfering with functional activities of child\'s daily life, such as eating, toileting, playing, which causes negative impact on child´s life and family. Objective: To develop, implement and analyze an evaluation protocol to assess manual children function with CP, aged between 0-7 years and 11 months old. Method: This study was divided into two stages - 1) planning: setting goals and target population, literature review on existing instruments, types of items and instrument format, 2) Construction: Construction I -development of items, selection of instruments used as basis of the protocol, selection of relevant items by age group, item analysis and protocol adjustment; Pilot Project - protocol application with 36 children 0-7 years, 11 months, 18 CP childerb and 18 children with typical development (TD), item analysis and protocol adjustment; Construction II - Content validation by professional / experienced researchers (experts) in the area, preparation and submission of the questionnaire to expert judges, items review (item inclusion or exclusion), analysis of experts evaluations and suitability of the protocol. Results: We selected 238 items, 38 items Revised Knox Preschool Scale (RKPPS) 126 items from Operationalized Portage Inventory (IPO), 32 from Denver II Developmental Screening Test (DDST-R) 38 from Pediatric Evaluation of Disability Inventory (PEDI) and 4 from Manual of Motor Evaluation - Motor Development Scale (MAM-EDM). All items were reviewed. We grouped 161 recurring items, totalizing 120 items, which we applied both in CP children and with CP and TD children. After the implementation, we performed a new protocol analysis and 6 similar items were grouped, 2 items divided and 7 items excluded, totalizing 109 items, which were sent as questionnaire to the expert judges. Further, experts assessments were analyzed and then 3 items were grouped, 1 item subdivided, and 7 items deleted, coming to a final protocol with 101 items, divided into eight age groups: 0-5 months of 6 months to 11 months, 1 year to 1 year and 11 months and, subsequentially, the annual sequence till 4 years to 4 years and 11 months; then there is an age group between 5 years and 6 years and 11 months, and after the age of 7 years to 7 years and 11 months. The resulting product was then called Children´s Manual Assessment General and Objective - AMIGO. Two children in each group were observed at each age, and children with TD had, overall, better scores compared to children with CP in each age group. The final considerations were that AMIGO has been valid and reached its main goal. But it is still under construction, and in future studies it will go through two more stages of construction, which were phase III - quantitative assessment and phase IV - validation, in order to be considered valid and secure to be uesd in clinical practice and in scientific research.

Young people with disabilities face a time of great stress as they move from child to adult care, which profoundly impacts them and their families. They 'transition' from very high and cohering levels of care, until they reach a point, determined by age, when they are receiving low levels of far less cohesive care. Further, the propensity shown by the Scottish Government to devolve down the responsibility for service and local policy delivery, can lead to unforeseen consequences resulting in variation in experiences. Does this devolution of responsibility, to local bodies and service users, produce a valuable personalisation of delivery or a worrying 'postcode lottery'? I draw on policy concepts to examine these two expectations:- 'street level bureaucracy' and the 'personalisation' agenda highlight the potential for discretion, learning and transfer, and accountability theory, highlight the potential to cooperate or conform to the same basic standards. I examine the case of young disabled people in Scotland moving from child orientated to adult care to show, through semi-structured interviews and documentary analysis, that there is some cooperation between various professions, but they make sense of policy from different perspectives. I found that, while broad parameters set by the Scottish Government were adhered to, council and health board protocols often varied, meaning that, in some cases, a house address number dictates the level of service delivered. The research is particularly important and timely in that it focuses on Scotland, is cross-professional in focus, has profound social implications and contributes to knowledge in placing 'transition' in the context of public policy theory. It confirms the importance of street level bureaucracy in a new context but, unexpectedly, I found that professionals would welcome increased accountability and outcome measurement.

As habilidades manuais podem estar prejudicadas na paralisia cerebral (PC),interferindo nas atividades funcionais do cotidiano da criança, como alimentar-se, ir ao banheiro, brincar, o que ocasiona impacto negativo na vida dela e da família. Objetivo: elaborar, aplicar e analisar um protocolo de avaliação da função manual de crianças com PC, de 0 a 7 anos e 11 meses de idade. Método: estudo dividido em 2 etapas - 1) planejamento: definição de objetivo e população alvo, realização de revisão da literatura sobre instrumentos já existentes, tipos de itens e formato de instrumento, 2) construção: construção I -desenvolvimento dos itens, seleção dos instrumentos utilizados como base do protocolo, seleção dos itens relevantes por faixa etária, análise dos itens e adequação do protocolo; projeto piloto - aplicação do protocolo junto a 36 crianças de 0 a 7 anos e 11 meses, sendo 18 com PC e 18 com DT, análise dos itens e adequação do protocolo; construção II - validação de conteúdo por profissionais/pesquisadores experientes (experts) na área, elaboração e envio do questionário aos juízes especialistas, revisão dos itens (inclusão e exclusão), análise das avaliações dos especialistas e adequação do protocolo. Resultados: foram selecionados 238 itens, sendo 38 itens da Escala Lúdica Pré Escolar de Knox (ELPK-R), 126 do Inventário Portage Operacionalizado (IPO), 32 do Teste de Triagem de Desenvolvimento de Denver II (TTDDR), 38 do Inventário de Avaliação Pediátrica de Incapacidade (PEDI) e 4 do Manual de Avaliação Motora - Escala de Desenvolvimento Motor (MAM-EDM). Todos os itens foram revisados. Realizou-se o agrupamento de 161 itens recorrentes, totalizando 120 itens, os quais foram aplicados em crianças com PC e DT. Após a aplicação, em nova análise do protocolo, foram agrupados 6 itens semelhantes, divididos 2 e excluídos 7, totalizando 109 itens, os quais foram enviados em forma de questionário para os juízes especialistas. Na sequência, as avaliações dos experts foram analisadas e, então, 3 itens foram agrupados, 1 item subdividido e 7 itens excluídos, chegando-se a um protocolo final com 101 itens, divididos em 8 faixas etárias: de 0 a 5 meses, de 6 meses a 11 meses, de 1 ano a 1 ano e 11 meses e, sucessivamente, na sequência anual até de 4 anos a 4 anos e 11 meses; em seguida há uma faixa etária de 5 anos a 6 anos e 11 meses e, após, a faixa etária de 7 anos a 7 anos e 11 meses. O resultado foi então denominado de Avaliação Manual Infantil Geral e Objetiva - AMIGO. Foram observadas 2 crianças de cada grupo em cada faixa etária, sendo que as crianças com DT apresentaram, no geral, melhores pontuações quando comparadas às crianças com PC da mesma faixa etária. Considerações finais: a avaliação AMIGO foi considerada válida e alcançou seu objetivo principal. Ainda está, porém, em processo de construção e, em estudos futuros, passará por mais duas fases de construção, sendo elas a fase III - avaliação quantitativa e a fase IV - validação, para que possa ser considerada totalmente válida e segura a sua utilização na prática clínica e na pesquisa científica. / Manual skills may be affected in cerebral palsy (CP), interfering with functional activities of child\'s daily life, such as eating, toileting, playing, which causes negative impact on child´s life and family. Objective: To develop, implement and analyze an evaluation protocol to assess manual children function with CP, aged between 0-7 years and 11 months old. Method: This study was divided into two stages - 1) planning: setting goals and target population, literature review on existing instruments, types of items and instrument format, 2) Construction: Construction I -development of items, selection of instruments used as basis of the protocol, selection of relevant items by age group, item analysis and protocol adjustment; Pilot Project - protocol application with 36 children 0-7 years, 11 months, 18 CP childerb and 18 children with typical development (TD), item analysis and protocol adjustment; Construction II - Content validation by professional / experienced researchers (experts) in the area, preparation and submission of the questionnaire to expert judges, items review (item inclusion or exclusion), analysis of experts evaluations and suitability of the protocol. Results: We selected 238 items, 38 items Revised Knox Preschool Scale (RKPPS) 126 items from Operationalized Portage Inventory (IPO), 32 from Denver II Developmental Screening Test (DDST-R) 38 from Pediatric Evaluation of Disability Inventory (PEDI) and 4 from Manual of Motor Evaluation - Motor Development Scale (MAM-EDM). All items were reviewed. We grouped 161 recurring items, totalizing 120 items, which we applied both in CP children and with CP and TD children. After the implementation, we performed a new protocol analysis and 6 similar items were grouped, 2 items divided and 7 items excluded, totalizing 109 items, which were sent as questionnaire to the expert judges. Further, experts assessments were analyzed and then 3 items were grouped, 1 item subdivided, and 7 items deleted, coming to a final protocol with 101 items, divided into eight age groups: 0-5 months of 6 months to 11 months, 1 year to 1 year and 11 months and, subsequentially, the annual sequence till 4 years to 4 years and 11 months; then there is an age group between 5 years and 6 years and 11 months, and after the age of 7 years to 7 years and 11 months. The resulting product was then called Children´s Manual Assessment General and Objective - AMIGO. Two children in each group were observed at each age, and children with TD had, overall, better scores compared to children with CP in each age group. The final considerations were that AMIGO has been valid and reached its main goal. But it is still under construction, and in future studies it will go through two more stages of construction, which were phase III - quantitative assessment and phase IV - validation, in order to be considered valid and secure to be uesd in clinical practice and in scientific research.

A síndrome de Moebius é caracterizada pela agenesia ou aplasia dos VI e VII pares de nervos cranianos, mal formação membros e em alguns casos oligofrenia. Como consequência dessa agenesia ou aplasia de alguns nervos cranianos, a musculatura facial é alterada e o crescimento facial ocorre de maneira atípica, provocando importantes problemas funcionais. O objetivo deste trabalho é identificar as principais alterações funcionais encontradas na síndrome e propor um tratamento precoce para essas alterações. / The syndrome of Moebius is characterized by agenesia or aplasia of the VI and VII cranial nerves, nerves and limbs malformation and in some cases oligofrenia. As a consequence of this agenesia or aplasia of some cranial nerves the facial musculature is changed and the facial growth is done atypically, causing important functional problems. The goal of our work is to identify the principal functional alterations and propose a early treatment for this alterations.

Current research examining the effects of resistive exercise programs in children with cerebral palsy (CP) has not met national guidelines for the duration of training. The lack of improvement in gross motor abilities after resistive training may be attributed to insufficient duration. Additionally, plyometric training has not been used as a treatment, despite evidence suggesting that it can improve running, throwing, and jumping skills. The current study evaluated the optimum duration and effects on gross motor abilities of a plyometric training treatment for three participants with spastic, unilateral CP using a multiple baseline, multiple probe design. Treatment was designed using the National Strength and Conditioning Association’s guidelines for intensity, volume, frequency, and variety of training. Treatment resulted in improvements in GMFM 66 scores, agility, and broad jump distance for all three participants. Consistency preceded improvements in distance or height. The optimum duration was dependent on the individual child and the outcome measure. Ongoing training is necessary to maintain running speed. However,slight declines or maintenance of performance in the GMFM, agility, and power tests at follow-up may be attributed to inconsistency in performance rather than decline.

Balance is the ability to establish an equilibrium between the body and its environment. Balance is a key component which is associated with a variety of movements and postural control. Children with cerebral palsy (CP) have difficulties with movement and postural control due to physical and neurological limitations. The purpose of this study was to investigate the effectiveness of a static and dynamic balance training program on the balance of boys and girls aged 7-11 years (N=4) who have mild to moderate cerebral palsy. A single-subject multiple baseline design was used for this study. Subjects were assessed on four valid field test measures (two static; two dynamic balances). Testing sessions were videotaped to ensure accuracy and reliability of the test measures. The interobserver agreement ranged from 80% to 87% on all four field tests. Baseline was established when subjects established at least three consistent measures, (within a 25% range on 3 of the 4 measures), or following the second week of baseline collection, which ever occurred first. Subjects were tested three times daily with mean scores plotted. Initially, two subjects were paired to begin the intervention period. The remaining two subjects continued in baseline period for one week, with the treatment intervention delayed. During training, subjects received training with a 1:1 teacher-student ratio. Training consisted of 45 minute balance training sessions, 4 times per week for a total of 4 weeks. Each subject was tested daily on one field test daily. Lesson plans were developed to address one of the four subsystems of balance. Post data was collected on all four field tests at one week intervals for a total of 3. Through visual analysis of the data, results indicate that some improvements occurred as a result of the implemented balance training program. Dynamic balance tests showed greater positive changes than the static balance tests. This may be due to the fact that since children like to use a variety of locomotor movements, and thus practice dynamic balance more than static balance. Anecdotal information from the parents seemed to support improvements in balance abilities. There is very little research that focuses on the balance of children with cerebral palsy. More studies are needed to further investigate balance training for persons with CP. / Graduation date: 1995

Cerebral Palsy (CP) is a childhood-onset neurological disorder caused by a non-progressive lesion in the developing brain. It causes permanent motor and movement disorders, and can sometimes cause secondary cognitive, sensory, and communication conditions. The majority of children with CP will survive into adulthood; however, a relatively small amount of research has been done about adulthood and aging with CP. Using data collected in Ontario with the Resident Assessment Instrument for Home Care (RAI-HC), a retrospective, cross-sectional analysis was performed to create a clinical profile of adults with CP receiving long term home care services in Ontario. Of the 519, 443 people in the sample, 2000 had CP. Persons with CP tended to be younger than comparison groups, had higher scores on functional assessment scales, and were more likely to use assistive devices. They tended to have lower scores on scales meant to predict decline in health or function than the comparison groups, suggesting increased health and functionality stability compared to other Home Care recipients. A second analysis assessed the association between functional assessment scales, demographic variables and clinical indicators and use of physical therapy (PT), occupational therapy (PT) and either PT or OT for persons with CP in this population. Using three logistic regression models, indicators that were found to have positive, significant associations with use of rehabilitative services were: receipt of initial assessment, likelihood of decline in functionality, use of a wheelchair, being married, and CCAC of assessment origin. Living in a private residence compared to living in an assisted living situation had a significant, negative effect on rehabilitative service use. These findings suggest that PT and OT are referred to persons with CP in reaction to risk of health declines, and not in an attempt to improve baseline functionality. Future research on the factors that would indicate likelihood of improvement with PT or OT could identify whether these associations are appropriate for optimum care for persons with CP who receive home care services.

There have been significant changes in the clinical management of cerebral palsy (CP) during the past 2 decades. Gastrostomy tubes and nutritional supplements have been paramount in enhancing the life expectancy of those with CP. The literature shows that as many as 90% of children with CP can now expect to live to adulthood.1-4 As a result, CP is no longer considered to be a condition limited to childhood. However, emerging populations pose new challenges to those who provide health care support. This article presents an overview of what we know about the health care needs of adults with CP. / From the Laurentian University, Sudbury, Ontario; The Hospital for Sick Children, Toronto, Ontario; and The Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada. / Dr Young is supported by a Canadian Institutes of Health Research Canada Research chair.