Rozprawy doktorskie na temat „Cerebral palsy”

Written by nurse practitioners for nurse practitioners, this one-of-a-kind resource provides the expert guidance you need to provide comprehensive primary care to children with special needs and their families. It addresses specific conditions that require alterations in standard primary care and offers practical advice on managing the major issues common to children with chronic conditions. A consistent format makes it easy to locate essential information on each condition. Plus, valuable resources help you manage the issues and gaps in health care coverage that may hinder quality care.

La modélisation musculosquelettique est aujourd’hui utilisée dans de nombreux domaines tels que l’analyse de la marche pathologique et la simulation des traitements thérapeutiques et chirurgicaux. Dans le cadre de la paralysie cérébrale (PC), la prise en considération des spécificités des patients, des troubles neurologiques et des déformations osseuses est nécessaire. Etant donné que les techniques d’imagerie médicale sont encore marginales en routine clinique, le recours aux modèles génériques reste donc indispensable. Notre étude rétrospective vise le développement d’un modèle musculosquelettique (MMS) générique adapté aux enfants PC. Une première étude détermine les limites d’un tel modèle pour la marche normale, les marches pathologiques des enfants paralysés cérébraux, et les postures pathologiques imitées par une population saine. Une seconde étude propose une technique de calibration pour raffiner les paramètres du MMS à partir des données recueillies de l’analyse quantifiée de la marche (AQM). Ainsi, on a pu déduire que, même si les résultats estimés sont représentatifs pour les adultes sains, le MMS standard présente des limites concernant la cinématique et les forces musculaires prédites pour les enfants sains et les enfants PC. D’autre part, la procédure de calibration influe de façon positive sur les données prédites comme les activations musculaires et les forces musculaires. Ce travail montre que le MMS générique peut être calibré à partir des données de l’AQM afin d’améliorer les résultats du modèle. Cette technique pourrait représenter une nouvelle perspective dans les applications cliniques de la modélisation musculosquelettique
The analysis of pathological gait using musculoskeletal modeling is a promising approach to qualify and quantify the pathology as well as to monitor the potential recovery after therapy. When dealing with cerebral palsy, its specific neurological disorders and consequently bones deformities, specific-subject musculoskeletal models has been developed. The imaging techniques are still unaffordable in clinical practises. So, using the LifeMod software, we aimed to develop musculoskeletal model in a retrospective study to evaluate the accuracy of surgical treatments on cerebral palsy. Two principles studies are performed. First, relying on the accuracy of a rescaled generic adult skeleton, the musculoskeletal modeling limitation have been determined when applying normal gait and pathological crouch and jump postures, imitated by healthy adults and children. Second, calibration technique had been developed to refine the model’s parameters based on data collectid from the subject. Results from musculoskeletal modeling are compared to gait analysis date. As results, even if the model outputs gave correct results with healthy adults, the standard rescaled musculoskeletal modeling showed limits on predicted kinematics and muscle forces for healthy and CP children. The refinement of subject-specific joint parameters and driving the model with the experimental GRF data have a huge influence in model outputs and improve quantitatively the predicted muscle activations and forces. This work pointed out that the parameters of a rescaled generic musculoskeletal moded can be refined and personalized to improve model’s outcomes. It may represent a new perspective in clinical applications

The thesis examined the importance for movement control of perceptual information about the relation of the actor to the environment and about the actor's action capabilities and bodily characteristics. In four experiments it was shown that providing better information improves perceptuo-motor performance in Cerebral Palsied (CP) children. The first two studies investigated whether CP and normal children find abstract tasks more difficult than concrete tasks. CP children were found to perform better on a concrete bang-the-drum-task than on an abstract move-as-far-as-you-can task. The underlying movement kinematics were also different, although the movements involved in both tasks were indistinguishable by eye. Thus, improving information about the CP child's relation to the environment by making a task more concrete improves movement control. The importance of perceiving one's action capabilities was studied in an interceptive timing task in which CP and nursery children were striking an accelerating ball. The results showed that both groups controlled initiation of the striking movements by the value of an optic variable tau specifying time-to-contact under constant velocity (thus treating the accelerating ball as if it was travelling at a constant speed). However, the affected hand of the CP children initiated the striking actions at a significant larger tau value, thus allowing for its relative slowness. The children's striking movements were also analysed in more detail to test a theory of how deceleration and timing of the hand are conjointly controlled.

Background. Children with cerebral palsy (CP) encounter a number of orthopedic complications as a result of abnormalities in motor function. One of the most significant complications is fragility fractures, occurring in up to 23% of children in prior reports. Despite a growing literature on how to best interpret bone densitometry in children, little research has determined optimal utilization of dual x-ray absorptiometry (DXA) in children with CP in order to characterize the patients' bone health status. This study outlines the use of the mechanostat theory of bone physiology to classify osteopenia and interpret bone complications in this population. The mechanostat theory posits that muscle forces have the greatest impact on bone strength and that low bone mass will result from one of two pathologic circumstances: a primary disorder of abnormally low bone mass despite normal muscle forces, and a secondary disorder of bone mass due to abnormally low muscle forces on bone. The later category, secondary osteopenia, is hypothesized to be the bone health state of most children with CP, due to the motor dysfunction resulting from brain injury in these children. Bone morbidity is expected to be greater in those with osteopenia. Methods. Single, community-based, rehabilitation centre, cross sectional study of 53 subjects with CP age 2-15 years of age. Subjects underwent a baseline interview, examination, x-ray, laboratory and DXA bone densitometry. Calculations of z-score values for total body bone mineral content and muscle mass were made based on published normal children. The z-scores determined the classification of osteopenia with -2 defined as abnormally low bone mineral content or muscle mass. Results. The subjects (51% females) had a mean age of 9 years (s.d.=3.8, range=2.5-15.8). All types and severity of CP were represented in the sample. Normal DXA bone parameters were seen in 24 children, with 11 children classified as having primary osteopenia, five having secondary osteopenia and three with both primary and secondary (mixed). Three children had fragility fractures. Using the classification proposed herein, the fractures occurred only in children defined as having osteopenia. Having at least one bone complication and joint subluxation were more prevalent in the osteopenic subjects compared to non-osteopenic subjects (Chi square, p<0.05). Using z-scores for bone mineral content as an outcome variable, only one CP specific factor, the Gross Motor Function Classification System, was an important independent variable (beta=-0.48, R2=0.18, p<0.05). The final model also included age (beta=0.52, R2=0.34, p<0.05) and gender (beta=-0.36, R2=0.12, p<0.05), showing lower z-scores in males and those of younger age. Use of anti-convulsants, type of CP, family history, calcium and vitamin D intake did not contribute to the model. Measures of pain or quality of life, although worse in osteopenic subjects, were not significantly related to reductions in bone mineral content, when severity of CP was controlled. Conclusions. Using the mechanostat theory to interpret bone density DXA measurements is a more physiologic way to interpret bone health in children and appears foundationally sound in this sample of children with CP. In the reported subjects orthopedic complications were more common in those with osteopenia, and fragility fractures were accurately classified in functional terms according to whether the osteopenia resulted from a primary or secondary bone defects.

In 2011, 19.2 million households in the United Kingdom had access to the Internet. Online social networks (OSN) such as Facebook, Twitter, MySpace, Bebo and YouTube have proved to be the most popular Internet activity (Office of National Statistics, 2011). 49% of these users have updated or created an OSN profile and are making over 24 million visits a month (Dutton, 2009). These websites are often directed at a broad market i.e. people without disabilities. Unfortunately people with disabilities, especially those with physical impairments, often have a greater risk of experiencing loneliness than people without a disability as a result of their mobility, access and or communication impairments. Conventional communication methods such as face-to-face communication, telephone communication and text message communication are often difficult to use and can limit the opportunities for people with disabilities to engage in successful socialisation with family members and friends (Braithwaiteet al, 1999). Therefore people with disabilities can often see online communication, especially OSNs, as an attractive alternative. Previous studies such as Braithwaite et al(1999), Ellis and Kent (2010) and Dobransky and Hargittai (2006) suggests that OSNs are opening a new world to individuals with disabilities. They help these individuals, especially those exhibiting lifelong physical challenges to carry out social interaction which they would otherwise not be able to do within the analogue world. However due to inaccessible features presented in the technology for example features requiring JavaScript, hard-coded text size and Captcha (AbilityNet, 2008; Cahill and Hollier, 2009 andAsuncion, 2010) access to OSNs is often difficult. The overarching purpose of this PhD research is to understand the experiences and challenges faced when people with the physical disability cerebral palsy (cp) use OSNs. It is estimated that 1 in 400 children born in the UK is affected by cp (Scope Response, 2007). The disability can present itself in a variety of ways and to varying degrees. There is no cure for cp, however management to increase social interaction especially through technological innovations is often encouraged (United Cerebral Palsy, 2001; Sharan, 2005 and Colledge, 2006). Previous studies such as AbilityNet (2008), Cahill and Hollier (2009), and Boudreau (2011) have explored mainstream OSNs use from the perspective of users with disabilities, i.e. blind and visually or cognitively impaired, but have placed great emphasis on investigating inaccessibility of OSNs without involving these users. Other studies such as Manna (2005) and Belchiorb et al (2005) have used statistical methods such as surveys and questionnaires to identify Internet use among people with unspecified disabilities. Conversely Asuncion (2010) has taken a broader approach involving OSN users using high-level taxonomies to classify their disabilities, and Marshall et al (2006) focused on a specific disability type, cognitive impairments, without considering the variety of limitations present within the disability. Other studies such as Pell (1999) have taken a broader yet more specific approach and looked at technology use, especially computer and assistive technology among people with physical disabilities, where only 7 out of 82 surveyed had cp. Whereas Braithwaiteet al (1999) focused on individuals with disabilities, where most were classified has having a physical disability. However the study does not explicitly look at OSNs but rather at online social support within forums for people with disabilities. Studies such as these have not involved the users; defined what constitutes disability or focused on cp without encompassing other disabilities, making it impossible to identify the requirements of OSN users with cp. Initially this PhD research explored the experiences and challenges faced when individuals with cp use OSNs. Fourteen interviews were carried out consisting of participants with variations of the disability. The study identified the reasons for OSN use and non-use and also discovered key themes together with challenges that affected their experiences. This work was followed by an in-context observational study that examined these individuals context of use. The study identified the OSNs and assistive technology used, tasks carried out and users feelings during interaction. As a result of these studies it was determined that changing OSNs prevented and or slowed down these users ability to communicate online. Previous work within human-computer interaction and other disciplines such as software engineering and management science, change is often discussed during software development and is restricted to identifying scenarios and tools that assist change management within information technology (Jarke and Kurkisuonio, 1998). Studies such as these have not considered change deployment or its affect on users, though within HCI such an understanding is limited. Other disciplines i.e. psychology and social sciences have looked at change deployment. Theorists such as Lewin (1952), Lippett (1958) and Griffith (2001) attempt to offer solutions. However no one theory or approach is widely accepted and contradictions, adaptations and exclusions are continually being made. Conversely Woodward and Hendry (2004) and By (2007) have attempted to contend with these difficulties specifically stress as a result of change, believing that if change agents are aware of what an affected individual is thinking during the on set of change it will help to minimise or prevent damage. Studies such as these have focused on software development or organisational change from the perspective of developers or employees, they have not considered OSNs or individuals with cp. To fill this gap a longitudinal OSN monitoring and analysis study was carried out. The study identified how OSN changes are introduced, their affect on users, and the factors that encourage change acceptance or non-acceptance. The study was divided into three studies: two studies investigating realworld examples of OSN change by observing the actions of change agents (Twitter.com and Facebook.com) and their users reactions to the change process. A third study that asked OSN users about their experiences of OSN change was also carried out. A by product of these studies was a unique way of displaying OSN change and user acceptance on a large scale using a infographic and an inductive category model that can be used to examine OSN change. The findings from the five studies were then distilled alongside identified change management approaches and theories to develop an five-stage process for OSN change for change agents to follow. The process defined the requirements for OSN change including the change agent responsibilities before, during and after the change.

This thesis concerns the literacy difficulties of fifteen children with cerebral palsy (CP). The children were an opportunistic sample from two schools, and were initially selected on the basis that they had typical abilities in other school subjects. A review of the literature pertaining to the development of literacy and related aspects of cognitive development in typically-developing children and children with CP informed the development of the research strategy. The children's literacy, their general non-verbal and communication abilities, as well as a set of cognitive abilities that could be related to literacy impairments, were assessed. The findings revealed that most, but not all, of the children with CP had literacy difficulties with low scores in reading and spelling, and all the children had problems with handwriting. Standardised assessments showed that while the children had good verbal abilities, they had very low scores on a non-verbal test. The children with the most severe literacy difficulties also had the most problems with phonological processing. Almost all of the children had difficulties with visual and spatial perception; however the better readers had typical results in an assessment of visual sequential memory. Tests of working memory (WM) revealed a clear division between typical levels of performance on verbal recall measures, and very poor performance on the visual components of working memory tests. There were mixed results for the assessment of the central executive, but generally those children who were the more able in literacy had higher scores. Correlations suggested that visual sequential memory; phonological segmentation; verbal recall; and aspects of the central executive of working memory were most closely associated with the children's literacy abilities. Thus, the findings indicate that children with CP ha,ve specific cognitive impairments, including a new suggestion that poor visual sequential memory abilities could delay the development of reading and spelling skills.

Self-concept is the perception that individuals have of themselves across different aspects of life such as academic performance or appearance. The Self-Concept Feedback Loop proposed for this research program conceptualised self-concept as developing through an interactive and iterative process involving social experiences and the cognitive processes of individuals. Through this process, individuals evaluate their behaviour or attributes against their internal standards. Subsequently, this evaluation influences their self-concept. In the general population, low self-concept has been linked to a range of negative outcomes, including poor academic achievement, and behaviour and mental health problems. However, research into the self-concept of children with cerebral palsy (CP) is rare. The motor and accompanying impairments associated with CP limit participation opportunities for children with CP, creating a unique social experience for these children that are likely to differ from typically developing (TD) children. Given this unique social experience, children with CP may perceive their self-concept differently from TD children as well as be at potential risk for low self-concept. The overall aim of this research program was to examine the self-concept of children with CP after identifying or developing a CP-specific self-concept instrument suitable for this purpose. In Study 1, a systematic review was undertaken to identify self-concept instruments suitable for children with CP. Five studies that measured the self-concept of preadolescent children with CP that had population-specific psychometric data were identified. Examination of the psychometric properties of the instruments utilised in those studies identified no CP-specific self-concept instruments, whilst existing instruments developed for TD children did not have strong psychometric support for their use with children with CP. In Study 2, a three-round Delphi consensus survey was conducted to identify self-concept domains relevant to children with CP. Three groups were recruited: professionals working with children with CP (n=21), caregivers of children with CP (n=18), and children with CP (n=12, 7 boys). Findings demonstrated that children with CP generally conceptualise self-concept using similar domains to TD children. However, several CP-specific domains were identified. Based on these findings, it was determined that the construction of a population-specific instrument which incorporates CP-specific domains was necessary in order to provide a comprehensive evaluation of self-concept for children with CP. The myTREEHOUSE Self-Concept Assessment (myTREEHOUSE) was developed using classical test theory based on the rational-empirical approach. Self-concept is measured by the child’s appraisal of their performance for 26 items across eight domains. The child’s appraisal is rated from three perspectives: Personal, Social, and Perceived. In addition, children also complete an Importance Rating. The discrepancy between the Importance Rating and the Personal Performance Perspective for each item is summed to achieve a Personal Concern Score which indicates the presence and severity of self-concept concerns. In Study 3, the validity and reliability of myTREEHOUSE was examined. Support for face and content validity was ascertained through semi-structured interviews with seven experts. myTREEHOUSE demonstrated strong internal consistency assessed with 50 children with CP (29 boys). Moderate test-retest reliability was demonstrated with a subset of 35 children (20 boys). Study 4 explored the profile of self-concept using myTREEHOUSE for 50 children with CP (29 boys) in relation to age, gender, and motor, communication, and cognitive function. Children with CP in this cohort reported high self-concept. Findings also demonstrated that self-concept was not associated with age, gender, motor function, or communication function. Cognitive function was found to be associated with the self-concept domains of Social Skills and Learning Skills. Study 5 investigated the relationship between self-concept and quality of life measured using two population-specific instruments; myTREEHOUSE for self-concept and CP QOL-Child for quality of life. Higher self-concept was associated with higher quality of life in this cohort of 25 children with CP (13 boys). The relationships between self-concept with child-reported quality of life were stronger than proxy-reported quality of life. Through this research program, it was ascertained that existing self-concept instruments are not suitable for children with CP, given their weak psychometric data and the absence of CP-specific domains. In response, the myTREEHOUSE Self-Concept Assessment was developed and preliminary validation undertaken. Findings from this research program present the first self-concept profile of children with CP and provide a deeper understanding about how these children perceive their self-concept and quality of life.

Thesis (PhD)--Stellenbosch University, 2013.
ENGLISH ABSTRACT: Conducted within a critical disability studies framework, this study explored the experience of communicative participation by adults with cerebral palsy who live with severe communication impairments. The concept of the participation of communicatively disabled people is relatively new, and the theoretical understanding of communicative participation is underdeveloped although participation is increasingly recognised as a central goal in rehabilitation. In addition, there is a paucity of information with reference to the trajectory of lifelong communication disability. Little is known about the communicative participation of adults with cerebral palsy in South Africa. Nine adults with cerebral palsy, who lived with significant communication impairments, participated in the study. They were between 32 and 49 years of age, and had lived South Africa all their lives. They were observed in social interactions in their daily lives on multiple occasions and took part in serial interviews over a six-month period. Using a pragmatist grounded theory approach, the data were analysed from an interpretive basis. Four main categories were constructed. The first category was “being misrecognised as a communicator”, which showed that the participants were not acknowledged as having equal moral participatory status in communicative exchanges. The second category, “contexts for communicating”, indicated that the participants lived with significant communication impairments which resulted in their experiencing limitations in a broad spectrum of life’s activities. The third category, “an embedded communicative self”, illuminated that the participants saw their communicative disabilities as embedded within a broader picture of being disabled, and that their communication impairments had a marked effect on their identity development. Through an analysis of lifetime contributions to communicative participation, the final category, “dynamic participation” revealed how communicative participation is a fluid, ever-changing process. Extending Ikäheimo’s (2010) model of social participation and recognition, a “dynamic recognition-theoretical model of communicative participation” is presented. Communicative participation is defined as a dynamic social process. It is undergirded by the moral recognition of the interactants as communicative partners, and is influenced by time as the dimension through which all communication takes place.
AFRIKAANSE OPSOMMING: Die studie, vanuit `n kritiese benadering, het serebraalgestermde volwassenes (wie se vermoë om te kommunikeer ernstig aangetas is) se ervaringe met betrekking tot hul deelname aan kommunikasie of situasies waarin daar gekommunikeer word, verken. Die konsep wat fokus op die deelname aan kommunikasie deur diegene wie se vermoë om te kommunikeer ernstig aangetas is, is `n relatief nuwe begrip. Die teoretiese grondslag van die konsep is onderontwikkeld, maar die konsep word toenemend gereken as een van die belangrikste doelwitte van die rehabilitasie-proses. Daar is ook`n gebrek aan inligting wat handel oor die verloop van mense se lewenslange ervaringe wie se vermoë om te kommunikeer ernstig aangetas is. Daar bestaan beperkte kennis oor volwassenes met serebraalgestremdheid in Suid-Afrika se deelname aan kommunikasie. Nege volwassenes met serebraalgestremdheid, wie se vermoë om te kommunikeer ernstig aangestas is, het deelgeneem aan die studie. Die deelnemers se ouderdomme (gedurende die tydperk waarin data-insameling plaasgevind het) het gewissel van 32 tot 49 jaar, en die deelnemers het nog altyd in Suid-Afrika gewoon. Die deelnemers se kommunikasie-gedrag gedurende verskeie sosiale situasies is waargeneem. Die deelnemers het ook oor `n periode van ses maande aan `n reeks onderhoude deelgeneem. Pragmatiese, gegronde teoretiese benadering (ook verwys na as ‘grounded theory’) is gebruik om die data te analiseer. Die bevindinge dui op vier hoof temas. Die eerste tema verwys na bevindinge wat handel oor ‘om misken te word as as iemand wat deelneem aan kommunikasie’. Die bevindinge dui daarop dat deelnemers van mening is dat hulle nie as `n gelykke beskou word gedurende situasies waarin daar gekommunikeer word. Die tweede tema verwys na ‘die konteks van kommunikasie’, en dui daarop dat weens die feit dat deelnemers se vermoë om te kommunikeer ernstig aangestas is, word hulle ook op `n verskeidenheid van lewensaktiwiteite ingeperk. Die derde tema verwys na die volgende: ‘die aantasting van die vermoë om te kommunikeer gesetel in die self’. Die tema dui daarop dat deelnemers die aantasting van hulle vermoë om te kommunikeer, sien as deel van die geheelbeeld van gestremdheid en dat die vermoë om te kommunikeer `n betekenisvolle impak op hul identiteitsontwikkel gehad het. Die lewenslange ervaringe van die deelnemers het aanleiding gegee tot die vierde en laaste tema, naamlik ‘dinamiese deelname’. Dit dui daarop dat die deelname aan kommunikasie nie staties is nie, maar voortdurend verander. Die studie bevindinge suggereer dat Ikäheimo’s (2010) se model van sosiale deelname en erkenning, uitgebrei kan word tot `n dinamiese teoretiese model wat die deelname aan kommunikasie erken. Die deelname aan kommunikasie word gedefiniëer as `n dinamiese sosiale proses. Die grondslag van die model behels die erkenning van diegene wat kommunikeer as deelgenote wat beïnvloed word deur tyd as die dimensie waardeur alle kommunikasie plaasvind.

INTRODUCCIÓN: La parálisis cerebral es una de las causas más frecuentes de discapacidad física en niños y supone una condición que persiste a lo largo de la vida (Krageloh-Mann & Cans, 2009). Concretamente, la prevalencia media mundial es de aproximadamente de 2 por cada 1000 nacidos vivos (Stavsky et al., 2017). El término parálisis cerebral incluye un grupo de trastornos permanentes del movimiento y / o postura y de la función motora debido a una afectación en el cerebro en desarrollado o inmaduro que pueden ir acompañados por diferentes comorbilidades (Rosenbaum et al., 2007; Surveillance of Cerebral Palsy in Europe, 2000). La parálisis cerebral es una condición heterogénea tanto en cuanto a etiología como en el tipo y gravedad de la afectación motriz. En este sentido, se considera útil categorizar a los individuos con parálisis cerebral en grupos para proporcionar un mayor nivel de detalle sobre las características y necesidades específicas de las diferentes personas (Surveillance of Cerebral Palsy in Europe, 2007). Los esquemas de clasificación tradicionales se han centrado principalmente en agrupar los casos según la distribución de las extremidades afectadas y el tipo predominante de tono o anormalidad del movimiento, lo que da lugar a tres grandes grupos de parálisis cerebral: el espástico, el discinetico y el atáxico (Platt, Krageloh‐Mann, & Cans, 2009). La presente tesis doctoral se centra en el estudio del segundo tipo más frecuente, la parálisis cerebral discinètica, que se caracteriza por movimientos involuntarios, descontrolados, recurrentes y, ocasionalmente, estereotipados. La resonancia magnética ha aumentado nuestra comprensión de la parálisis cerebral (Vandborg et al., 2015), pero mientras que la mayoría de los estudios se centran en la parálisis cerebral espástica, los estudios de neuroimagen centrados en la parálisis cerebral discinética son aun escasos. Tanto los procesos cognitivos globales como específicos pueden verse afectados en la parálisis cerebral y casi el 50% de la población de parálisis cerebral presenta un cociente intelectual por debajo de 70 (Novak, Hines, Goldsmith, & Barclay, 2012). La consideración de las funciones cognitivas es uno de los aspectos centrales en el estudio de la parálisis cerebral (Schiariti, Selb, Cieza, & O’Donnell, 2015) siendo la función ejecutiva de particular interés debido a su papel clave en la adquisición efectiva de nuevas habilidades, conocimiento y la aplicación de estas conocimiento en el día a día (Anderson & Ylvisaker, 2009). La asociacione entre la calidad de vida y la función ejecutiva se ha descrito en la población general y en otras condiciones neurológicas y psiquiátrica distintas a la parálisis cerebral (Barf, Post, Verhoef, Gooskens, & Prevo, 2010; Davis, 2010; Pattanayak, Sagar, & Mehta, 2012; Ritsner, 2007; Sherman, Slick, & Eyrl, 2006). Existe acuerdo en que la parálisis cerebral discinética presenta mayor gravedad motriz que otros tipos parálisis cerebral (Himmelmann et al., 2009). Sin embargo, existen pocos estudios que comparen las capacidades cognitivas entre este tipo de parálisis cerebral y otros subtipos y, de hecho, la mayoría de ellos no controla los resultados por el nivel de gravedad motriz. Ningún estudio hasta la fecha se ha enfocado específicamente en estudiar la función ejecutiva ni su asociación con las características de la estructura cerebral en este subtipo de parálisis cerebral. Las lesiones de los ganglios basales y el tálamo son especialmente frecuentes en personas con parálisis cerebral discinética (Bax, Tydeman, & Flodmark, 2006; Himmelmann, Ahlin, Jacobsson, Cans, & Thorsen, 2011) y dado que los circuitos fronto-estriatales juegan un papel crucial en el funcionamiento ejecutivo para las personas con un desarrollo normal (Bottcher, 2010; Krause et al., 2012), seria esperable encontrar este correlato anátomo-funcional en la parálisis cerebral discinética. Sin embargo, muy pocos trabajos han estudiado la relación entre la estructura cerebral y el funcionamiento ejecutivo en esta población. De hecho, no existe ningún estudio que analice esta relación en las personas con parálisis cerebral discinética (Weierink, Vermeulen, & Boyd, 2013). OBJETIVOS: El objetivo general de la tesis fue caracterizar el funcionamiento ejecutivo y el funcionamiento intelectual general y sus bases biológicas en imagen de resonancia magnética estructural convencional y de difusion en la parálisis cerebral discinética. Específicamente, en la presente tesis se formularon cuatro objetivos que han sido abordados mediante la realización de cuatro estudios. Primero, analizar el impacto de la función ejecutiva en la calidad de vida en personas con parálisis cerebral discinética (Estudio 1). El segundo objetivo fue identificar el perfil de funcionamiento ejecutivo e intelectual en las personas con parálisis cerebral discinética (Estudio 2). Tercero, identificar las alteraciones de la estructura cerebral en participantes con parálisis cerebral discinética (Estudio 3 y Estudio 4). Cuarto, investigar el correlato neural del funcionamiento ejecutivo e intelectual general en participantes con parálisis cerebral discinética (Estudio 3 y Estudio 4). RESULTADOS: En consecuencia, los principales hallazgos de los estudios son los siguientes. 1) Uno de los componentes de las funciones ejecutivas, la flexibilidad cognitiva, es un predictor importante de la calidad de vida en personas con parálisis cerebral discinética. 2) Las personas con parálisis cerebral discinética presentan dificultades tanto en el rendimiento intelectual general como en el funcionamiento ejecutivo. Sin embargo, las habilidades de planificación parecen ser similares a las de los controles con desarrollo normativo. Además, las personas con parálisis cerebral discinética muestran un mejor funcionamiento intelectual y ejecutivo que las personas con parálisis cerebral espástica, lo que indica una tendencia general hacia un mejor rendimiento cognitivo en lugar de un déficit disejecutivo específico. 3) Existen lesiones observables en la substancia blanca y gris, así como una reducción de la integridad de la substancia blanca en la parálisis cerebral discinética. Concretamente, las lesiones en el tálamo lateral posterior y en el lóbulo frontal son los más comunes en nuestra muestra de personas con parálisis cerebral discinética. Además, la pérdida en la integridad de la sustancia blanca en la parálisis cerebral discinética predomina en regiones posteriores subyacentes, principalmente en la corteza parietal. 4) El funcionamiento intelectual general está relacionado con la integridad de la substancia blanca en varias regiones cortico-corticales y cortico-subcorticales y con lesiones cerebrales observables principalmente del tálamo posterior. Las funciones ejecutivas se relacionaron con la microestructura de la sustancia blanca en regiones que contienen las vías fronto-corticales y cortico-subcorticales posteriores, así como con las lesiones cerebrales observables especialmente en el lóbulo parietal y de cuerpo calloso medio y posterior. Contrariamente a nuestra hipótesis, no se identificaron relaciones significativas entre la función ejecutiva y las vías fronto-estriatales. REFRENCIAS: Anderson, V., & Ylvisaker, M. (2009). Executive function and the frontal lobes: Themes for child development, brain insult and rehabilitation. Developmental Neurorehabilitation, 12(August), 253–254. https://doi.org/10.3109/17518420903086899 Barf, H. A., Post, M. W. M., Verhoef, M., Gooskens, R. H. J. M., & Prevo, A. J. H. (2010). Is cognitive functioning associated with subjective quality of life in young adults with spina bifida and hydrocephalus? Journal of Rehabilitation Medicine, 42(1), 56–9. https://doi.org/10.2340/16501977-0481 Bax, M., Tydeman, C., & Flodmark, O. (2006). Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study. Jama, 296(13), 1602–8. https://doi.org/10.1001/jama.296.13.1602 Bottcher, L. (2010). Children with spastic cerebral palsy, their cognitive functioning, and social participation: a review. Child Neuropsychology : A Journal on Normal and Abnormal Development in Childhood and Adolescence, 16(3), 209–228. https://doi.org/10.1080/09297040903559630 Davis, J. (2010). The independent contribution of executive functions to health related quality of life in older women. BMC Geriatrics, 10(1), 16. Retrieved from http://www.biomedcentral.com/1471-2318/10/16 Himmelmann, K., Ahlin, K., Jacobsson, B., Cans, C., & Thorsen, P. (2011). Risk factors for cerebral palsy in children born at term. Acta Obstetricia et Gynecologica Scandinavica, 90(10), 1070–1081. https://doi.org/10.1111/j.1600-0412.2011.01217.x Himmelmann, K., McManus, V., Hagberg, G., Uvebrant, P., Krageloh-Mann, I., & Cans, C. (2009). Dyskinetic cerebral palsy in Europe: trends in prevalence and severity. Archives of Disease in Childhood, 94(12), 921–926. https://doi.org/10.1136/adc.2008.144014 Krageloh-Mann, I., & Cans, C. (2009). Cerebral palsy update. Brain & Development, 31(7), 537–544. https://doi.org/10.1016/j.braindev.2009.03.009 Krause, M., Mahant, N., Kotschet, K., Fung, V. S., Vagg, D., Wong, C. H., & Morris, J. G. L. (2012). Dysexecutive behaviour following deep brain lesions - Adifferent type of disconnection syndrome? Cortex, 48(1), 97–119. https://doi.org/10.1016/j.cortex.2011.03.014 Novak, I., Hines, M., Goldsmith, S., & Barclay, R. (2012). Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics, 130(5), e1285-312. https://doi.org/10.1542/peds.2012-0924 Pattanayak, R. D., Sagar, R., & Mehta, M. (2012). Neuropsychological performance in euthymic Indian patients with bipolar disorder type I: correlation between quality of life and global functioning. Psychiatry and Clinical Neurosciences, 66(7), 553–563. https://doi.org/10.1111/j.1440-1819.2012.02400.x Platt, M. J., Krageloh‐Mann, I., & Cans, C. (2009). Surveillance of cerebral palsy in Europe: reference and training manual. Medical Education, 43, 495–496. Ritsner, M. S. (2007). Predicting quality of life impairment in chronic schizophrenia from cognitive variables. Quality of Life Research, 16(6), 929–937. https://doi.org/10.1007/s11136-007-9195-3 Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., … Jacobsson, B. (2007). A report: the definition and classification of cerebral palsy April 2006. Developmental Medicine and Child Neurology. Supplement, 109, 8–14. Schiariti, V., Selb, M., Cieza, A., & O’Donnell, M. (2015). International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: A consensus meeting. Developmental Medicine and Child Neurology, 57(2), 149–158. https://doi.org/10.1111/dmcn.12551 Sherman, E., Slick, D., & Eyrl, K. (2006). Executive dysfunction is a significant predictor of poor quality of life in children with epilepsy. Epilepsia, 47(11), 1936–1942. https://doi.org/10.1111/j.1528-1167.2006.00816.x Stavsky, M., Mor, O., Mastrolia, S. A., Greenbaum, S., Than, N. G., & Erez, O. (2017). Cerebral Palsy—Trends in Epidemiology and Recent Development in Prenatal Mechanisms of Disease, Treatment, and Prevention. Frontiers in Pediatrics, 5(February), 1–10. https://doi.org/10.3389/fped.2017.00021 Surveillance of Cerebral Palsy in Europe. (2000). Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Developmental Medicine & Child Neurology, 42(12), 816–824. https://doi.org/10.1111/j.1469-8749.2000.tb00695.x Surveillance of Cerebral Palsy in Europe. (2007). The definition and classification of cerebral palsy. Developmental Medicine & Child Neurology, 49(109), 1–44. https://doi.org/http://dx.doi.org/10.1111/j.1469-8749.2007.00001.x Vandborg, P. K., Hansen, B. M., Greisen, G., Mathiasen, R., Kasper, F., & Ebbesen, F. (2015). Follow-up of extreme neonatal hyperbilirubinaemia in 5- to 10-year-old children: A Danish population-based study. Developmental Medicine and Child Neurology, 57(4), 378–384. https://doi.org/10.1111/dmcn.12603 Weierink, L., Vermeulen, R. J., & Boyd, R. N. (2013). Brain structure and executive functions in children with cerebral palsy: A systematic review. Research in Developmental Disabilities, 34(5), 1678–1688. https://doi.org/10.1016/j.ridd.2013.01.035
Magnetic resonance imaging has increased our understanding of cerebral palsy [1] but most studies have focused on spastic cerebral palsy, whilst neuroimaging studies of dyskinetic cerebral palsy remain scarce.Global and specific cognitive processes may be affected in cerebral palsy, with almost 50% of the cerebral palsy population having an intellectual quotient below 70 [2]. Cognitive functions are considered one of the essential “Core Sets” in cerebral palsy [3], executive function being of particular interest because of its key role in the effective acquisition of new skills, knowledge, and the application of this knowledge in life [4]. Associations between quality of life and executive function have been described in the general population, in psychiatric conditions, and in neurological conditions other than cerebral palsy [5–9].It is agreed that dyskinetic cerebral palsy is associated with poorer motor outcomes than other cerebral palsy types [10] but very few studies compare cognitive abilities in dyskinetic cerebral palsy with those of other cerebral palsy subtypes, particularly in groups with similar levels of motor ability. No study to date has specifically focused on executive function nor its association with brain magnetic resonance imaging characteristics in this cerebral palsy subtype. Basal ganglia and thalamus lesions are frequently described in people with dyskinetic cerebral palsy [11, 12] and fronto-striatal circuitry play a crucial role on executive functioning for typically developing people [13, 14]. However, there is a paucity of brain imaging studies focussing on executive functioning, with no studies including participants with dyskinetic cerebral palsy [15].The overall aim of the thesis was to characterize executive functioning and general intellectual functioning and its biological bases in dyskinetic cerebral palsy, as measured by diffusion and structural magnetic resonance imaging. Specifically, the current thesis formulated the following four aims, which were accomplished through four studies. First, to analyse the impact of executive function on quality of life in people with dyskinetic cerebral palsy (Study 1). Second, to map executive and intellectual functioning in people with dyskinetic cerebral palsy (Study 2). Third, to identify brain structure alterations in participants with dyskinetic cerebral palsy (Study 3 and Study 4). Fourth, to investigate the neural correlate of executive and general intellectual functioning in participants with dyskinetic cerebral palsy (Study 3 and Study 4).The main findings of the studies are the following. (1) An executive function domain, cognitive flexibility, is an important driver of quality of life in people with dyskinetic cerebral palsy. (2) People with dyskinetic cerebral palsy present difficulties in both general intellectual and executive functioning but goal setting abilities are close to those in typically developing controls. Additionally, people with dyskinetic cerebral palsy display better intellectual and executive functioning than people with spastic cerebral palsy, indicating a general tendency towards a better cognitive level rather than a specific dysexecutive deficit.(3) Observable white and grey matter lesions as well as white matter integrity are involved in dyskinetic cerebral palsy. Specifically, posterior lateral thalamus and the frontal lobe lesions are the most common in our sample of people with dyskinetic cerebral palsy. In this sample, the loss in the integrity of the white matter predominantly appears outside of the frontal lobe, mainly in the parietal cortex. (4) General intellectual functioning is related to white matter integrity in several cortico-cortical and cortico-subcortical regions and with observable brain lesions particularly in the posterior thalamus. Executive functions were related with white matter microstructure in regions containing fronto-cortical and posterior cortico-subcortical pathways and with observable brain lesions particularly in the parietal lobe and the middle and posterior corpus callosum. Unexpectedly, neither in terms of white matter microstructure nor in terms of observable lesions, was there a significant relationship between executive function and the fronto-striatal pathways.References1. Vandborg, P. K., Hansen, B. M., Greisen, G., Mathiasen, R., Kasper, F., & Ebbesen,F. (2015). Follow-up of extreme neonatal hyperbilirubinaemia in 5- to 10-year-old children: A Danish population-based study. Developmental Medicine and Child Neurology, 57(4), 378–384.2. Novak, I., Hines, M., Goldsmith, S., & Barclay, R. (2012). Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics. DOI:10.1542/peds.2012-09243. Schiariti, V., Selb, M., Cieza, A., & O’Donnell, M. (2015). International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: A consensus meeting. Developmental Medicine and Child Neurology. DOI:10.1111/dmcn.125514. Anderson, V., & Ylvisaker, M. (2009). Executive function and the frontal lobes: Themes for child development, brain insult and rehabilitation. Developmental neurorehabilitation. DOI:10.3109/175184209030868995. Barf, H. A., Post, M. W. M., Verhoef, M., Gooskens, R. H. J. M., & Prevo, A. J. H. (2010). Is cognitive functioning associated with subjective quality of life in young adults with spina bifida and hydrocephalus? Journal of rehabilitation medicine. DOI:10.2340/16501977-04816. Davis, J. (2010). The independent contribution of executive functions to health related quality of life in older women. BMC Geriatrics. DOI: 10.1186/1471-2318-10- 16.7. Pattanayak, R. D., Sagar, R., & Mehta, M. (2012). Neuropsychological performance in euthymic Indian patients with bipolar disorder type I: Correlation between quality of life and global functioning. Psychiatry and clinical neurosciences, 66(7), 553–563. 8. Ritsner, M. S. (2007). Predicting quality of life impairment in chronic schizophrenia from cognitive variables. Quality of Life Research, 16(6), 929–937.9. Sherman, E., Slick, D., & Eyrl, K. (2006). Executive dysfunction is a significant predictor of poor quality of life in children with epilepsy. Epilepsia. DOI:10.1111/j.1528-1167.2006.00816.x10. Himmelmann, K., McManus, V., Hagberg, G., Uvebrant, P., Krageloh-Mann, I., & Cans, C. (2009). Dyskinetic cerebral palsy in Europe: trends in prevalence and severity. Archives of Disease in Childhood, 94(12), 921–926.11. Bax, M., Tydeman, C., & Flodmark, O. (2006). Clinical and MRI correlates of cerebralpalsy: the European Cerebral Palsy Study. JAMA, 296(13), 1602–1608.12. Himmelmann, K., Ahlin, K., Jacobsson, B., Cans, C., & Thorsen, P. (2011). Risk factors for cerebral palsy in children born at term. Acta Obstetricia et Gynecologica Scandinavica, 90(10), 1070–1081.13. Krause, M., Mahant, N., Kotschet, K., Fung, V. S., Vagg, D., Wong, C. H., & Morris,J. G. L. (2012). Dysexecutive behaviour following deep brain lesions – A different type of disconnection syndrome? Cortex, 48(1), 97–119.14. Bottcher, L. (2010). Children with spastic cerebral palsy, their cognitive functioning, and social participation: a review. Child neuropsychology: A journal on normal and abnormal development in childhood and adolescence, 16(3), 209–228.15. Weierink, L., Vermeulen, R. J., & Boyd, R. N. (2013). Brain structure and executive functions in children with cerebral palsy: A systematic review. Research in Developmental Disabilities, 34(5), 1678–1688.

Shortly after birth, healthy infants exhibit so-called fidgety movements, while infants who later develop cerebral palsy (CP) lack these movements. General Movement Assessment (GMA) which is a clinical method, has proven its accuracy in detecting the absence (or presence) of fidgety movements, but for practical reasons, this method has not been adopted widely in the clinics. In order to create a similar but objective computer-based approach, Berg (2008) and Meinecke (2006) have studied discriminative features based on movement data collected from electromagnetic sensors and video. In this thesis, in addition to evaluation and comparison of previously introduced features, different classification methods have been applied to a suboptimal subset of these features. The results from linear and nonlinear separability analyses of features, confirm that dynamic features have better descriptive capabilities compared to statistically characterized features. Furthermore, it turns out that fidgety movements in the head (neck) and the arms show significant potential in distinguishing normal and abnormal infants, compared to signals from the trunk and the feet. The achieved results show 86% sensitivity and 90% specificity, which are highly acceptable, but this study needs further attendance before having any clinical usability. This study contains the first step of a typical medical research, meaning that the global (generalized) validity of the implemented methods are yet to be investigated, suppose that a representative selection (data) is available.

The aim of the present study was to examine the predictive values of sociodemographic variables, parental variables (parental stress, family functioning, parental adjustment, coping methods), and child variables (coping methods, self concept) for the adjustment of children with spastic cerebral palsy. Transactional stress and coping model was used as the conceptual framework for the study. The sample of the study was composed of 80 children with spastic cerebral palsy and one of their parents. Hierarchical regression analysis was conducted to test the child adjustment by using child gender, parent education, parental stress, family functioning, parental adjustment, parental coping methods, child coping methods, and child self concept as independent variables. Results revealed that parentalstress, parents&rsquo
problem solving/optimistic coping and fatalistic coping predicted the adjustment of children with spastic CP. However, parental adjustment, family functioning, child coping and child self concept were not significantly predicting of child adjustment. The findings, strengths, limitations as well as the implications of the findings were discussed.

An adjustable chair was developed for children with cerebral palsy in Uganda. The chairs these children use today are custom made which means that they cannot be used when a child outgrows a chair. Sometimes the chair is used by other children and does not give the support that the child needs. The project was executed in the capitol, Kampala, by the two design engineer students Faith Auma and Emma Lingehed in collaboration with Makerere University, Kampala school for the physically handicapped and Katalemwa Cheshire home. The goal of the project was to help pupils with cerebral palsy from a young age develop adequate sitting behaviour and become more physically independent. The chair should be able to be manufactured and assembled in Uganda and the material should be able to be found in the country. The project started by clarifying the problem, information was collected through literature studies, study visits and interviews. The gathered information was used to create a product specification focusing on safety, environment, manufacturing and ergonomics. All background information was used throughout the idea generation. A number of ideas were generated and evaluated until a final concept was found. The final concept, called Billy, was chosen through a concept scoring where it was evaluated against three other concepts. Billy was considered the easiest concept to manufacture in Uganda and had the simplest construction. Billy was developed further and became the final concept Entebbe. Entebbe is a chair that is adjustable and gives the support a child with cerebral palsy needs. A prototype was made at Katalemwa Cheshire home.  Entebbe can be manufactured in Uganda and since it is module-based it can easily be repaired and resized by simply changing the concerned parts. This also means that parts can be reused to build other chairs. Entebbe can be adjusted in five different ways and requires no tools to assemble.
En justerbar stol utvecklades för barn med cerebral pares i Uganda. Stolarna dessa barn använder idag är specialdesignade vilket innebär att de inte kan användas när barnet växer ur stolen. Ibland används då stolen av andra barn och ger därmed inte det stöd som barnet behöver. Projektet genomfördes i huvudstaden, Kampala, av de två designingenjörsstudenter Faith Auma och Emma Lingehed i samarbete med Makerere University, Kampala school for the physically handicapped och Katalemwa Cheshire home. Målet med projektet var att hjälpa elever med cerebral pares redan från unga år att utveckla ett korrekt sittbeteende och bli mer fysiskt oberoende. Stolen ska kunna tillverkas och monteras i Uganda och materialet ska finnas i landet. Projektet började med att studera och klargöra problemet, information samlades in genom litteraturstudier, studiebesök och intervjuer. Den insamlade informationen användes för att skapa en kravspecifikation med fokus på säkerhet, miljö, tillverkning och ergonomi. Bakgrundsinformationen användes under idégenereringen. Ett antal idéer genererades och utvärderades tills ett slutgiltigt koncept hittades. Det slutgiltiga konceptet, Billy, valdes genom en concept scoring där det utvärderades mot tre andra koncept. Billy ansågs vara det koncept som var enklast att tillverka i Uganda och hade den enklaste konstruktionen. Billy vidareutvecklades och blev det slutliga konceptet Entebbe. Entebbe är en stol som är justerbar och ger det stöd ett barn med cerebral pares behöver. En prototyp tillverkades vid Katalemwa Cheshire home. Entebbe kan tillverkas i Uganda och eftersom den är modulbaserad är den lätt att reparera och ändra storlek på genom att enkelt byta ut de berörda delarna. Detta innebär att delarna även kan återanvändas för att bygga andra stolar. Entebbe kan justeras på fem olika sätt och inga verktyg krävs för att montera ihop stolen.

This case study explored the factors that influence the experience of night-time postural management equipment by children with cerebral palsy in the South-West of England. The aims were to explore the views of children on using a sleep system, the role of their parents and therapist in its use and the quality of sleep experienced before and during use of a sleep system. Further objectives were the identification of factors that affect the use of sleep systems and the production of findings to guide therapists' clinical practice. Seven subunits made up the whole case, with each one consisting of a child, aged 18 months to nine years who had just been prescribed a sleep system, the child's therapist and parents. All participants, excepting children under three years old, were interviewed. Talking Mats, an innovative communication tool, was used to enable children with little or no verbal communication to give their views. Children as young as three years old were able to express their views on sleeping in a sleep system and to provide reasons for waking in the night. The findings included sleep difficulties in six out of seven children, two of whom improved with the use of a sleep system. Six children were thought to experience regular pain or discomfort, two of whom were more comfortable when sleeping in their sleep system. Factors were identified that influenced whether a child and family were able to continue using a sleep system at night including the finding that some of the therapists who were prescribing sleep systems did not have the necessary knowledge and experience. It was concluded that when children are given the appropriate tools they can have a voice and be able to practice making decisions about their healthcare. It is suggested that when considering prescription of a sleep system, use of the ICF framework model would assist clinicians in focussing on those factors that predict the child and family are most likely to continue to use it. Therapy services should consider the role of a specialist clinician to lead local postural management services and to put in place training and competency measures for generalist therapists to ensure that they have the necessary knowledge and experience.

Thesis (B.Sc)--University of Hong Kong, 2000.
"A dissertation submitted in partial fulfilment of the requirements for the Bachelor of Science (Speech and Hearing Sciences), The University of Hong Kong, April 29, 2000." Also available in print.

Although Cerebral Palsy (CP) is a lifelong disability, the research has mainly focused in children with CP. However, in recent years new studies have examined the different aspects of being an adult with a congenital disability.

The overall aim of this thesis is to contribute to increased knowledge and understanding in living with cerebral palsy as an adult, with special focus on the lived body and physiotherapy/physical activity.

The thesis is based on two populations. The first population (study I) consists of 48 individuals with a variation in gross motor function equivalent to the general CP‐population, including all five levels according to a gross motor classification (Gross Motor Function Classification System, GMFCS). The second population (study II and III), consists of 22 individuals, representing level II to IV according to the gross motor classification (GMFCS).

Study I comprises structured questions and clinical investigations with well‐recognized assessment instruments and are analysed according to quantitative methods. Study II and III are based on in‐depth interviews and are analysed using qualitative methods.

The overall result is that there is a deterioration of motor function in many individuals already early in adulthood. These deteriorations are preceded and/or followed by musculoskeletal problems such as pain and limited range of motion, often in combination with fatigue. Despite deteriorations many people maintain daily personal activities, but are often forced to prioritize among societal activities.

The deterioration is often perceived as slow and imperceptible, but it also results in a change in self‐image with new thoughts about otherness and being different. This can be experienced in relation to activity limitations with difficulties in taking part in other people’s activities, but also in relation to attitudes and treatment from other people. The process of deterioration also influences autonomy, with limited ability to determine one’s own daily life.

Important prerequisites for carrying out physical activity in a longer perspective is that it has to be enjoyable, give effects, be comprehensible and integrated in daily life. In addition it is important with support from competent professionals in health care. Experiences of these prerequisites vary and, above all, in adulthood the lack of competent support is a factor which is illuminated of the majority of the interviewed and assessed individuals.

Cerebral palsy (CP) is still the most common cause of chronic motor disability in hildhood. Until now, there has not been any previous national study of the anorama of subtypes, severity or risk factors among children with CP in Norway. his is a population based study of a cohort of children with CP born 1996 to 1998 in orway. These children are recorded in the Cerebral Palsy Register of Norway. The P definition and classification system agreed on by the Surveillance of Cerebral alsy in Europe (SCPE) are applied. The study showed that the prevalence of CP in orway was 2.1 per 1000 live births, comparable with other similar populations. Most children were classified in the spastic bilateral subtype (49%), about ne third (33%) in the spastic unilateral subtype and less than 10% in the dyskinetic r in the ataxic subtype. Both the distribution of subtypes and gross motor function impairments were comparable with other populations in developed countries. More children in our study had fine motor function impairments, as well as associated impairments. The associated impairments included both impairment of speech and feeding, in addition to impairments of vision, hearing, cognition and presence of active epilepsy. We identified both breech presentation and induction of labour as independent risk factors for CP. There was a significant increased risk of CP in children born in breech presentation compared to vertex presentation, in particular for singletons born at term by vaginal delivery. Breech presentation was however not associated with specific subtypes of CP or with the extent of gross or fine motor impairments. There was also an increased risk for CP in children after induction of labour. Induction of labour was associated with a higher proportion of children with the bilateral spastic subtype as well as in those born at term with four-limb involvement. When we studied multiple risk factors (maternal disease, assisted fertilization, plurality, abnormal placental structure, bleeding in pregnancy, small for gestational age, abnormal presentation, Apgar score at 5 minutes <7 and preterm birth) we found that increasing number of risk factors were associated with an exponentially increased risk for CP. Combinations of these risk factors were more common in children born preterm, while both among term and preterm born children, few shared the same combinations of risk factors.

Aim: The aim of this study was to evaluate whether submaximal muscle endurance at 20% of maximal voluntary isometric contraction (MVIC) is as reduced as muscle strength in elbow flexion in children with cerebral palsy (CP), and whether motor unit recruitment to compensate muscle fatigue is hampered in this group. Methods: Twelve subjects with cerebral palsy and seventeen control subjects performed three MVICs of elbow extension and flexion, and an endurance task holding a load of approximately 20% of MVIC until exhaustion. Both tasks involved either the affected or the non-dominant arm. During the MVICs, elbow extension and flexion torque and surface electromyography (EMG) from biceps brachii, triceps longus and triceps lateralis were collected. During the endurance task EMG from the same three muscles, in addition to accelerometer and inclinometer data were collected. Results: The CP group produced some lower torque and significant lower agonist EMG amplitudes during MVIC compared to the control group. The holding time to exhaustion was similar in the two groups. The CP group did not increase EMG amplitudes during this task, while the control group did. This difference between the two groups was significant. The median frequency (MDF) from start to end of the endurance task decreased on average 50% less in the CP group, but this difference between the two groups was not significant. Standard deviation (SD) of angle increased from start to end in both groups, increasing significantly more in the control group. SD of acceleration increased significantly in both groups, increasing more in the control group. Conclusion: The CP and the control group carried out the endurance task to exhaustion. The CP and the control group had similar holding time at the same relative load during the endurance task indicating muscle endurance was similar affected as muscle strength in children with CP. Agonist muscle activity during the endurance task did not increase in the CP group. Consequently, the CP subjects were not able to recruit additional motor units and had relatively lower levels of muscle fatigue. Key words: Cerebral palsy, MVIC, endurance, 20% of MVIC, holding time, EMG, biceps brachii, motor unit recruitment, muscle fatigue.

Purpose: To investigate the coping strategies of adults with cerebral palsy (CP) who were growing older and experiencing changes in their functional abilities. Methods: Qualitative descriptive phenomenology was used. Antonovsky’s concepts of sense of coherence (SOC) were applied to examine the coping approaches of adults growing older with CP. Data from 12 participants were gathered through in-depth, semi-structured interviews. Results: Three themes emerged from the analysis: Awareness, Acceptance and Action reflects strategies of how participants gain awareness, become better able to accept what they are experiencing and then position themselves to take appropriate actions; Negotiating One’s World depicts experiences of empowerment, disempowerment and self-responsibility; and Independence is Everything portrays what being autonomous means to participants. Despite the fact that their physical abilities seemed to deteriorate as they grew older, most participants described improvements in psychosocial aspects of their lives and were able to maintain SOC while growing older with CP. Discussion: Based on the interview findings, participants had not been adequately informed of the possibility of experiencing secondary conditions, e.g., pain and fatigue, as they grew older. Pediatric therapy programs have not adequately anticipated challenges that may occur in adulthood. Greater preventive healthcare is called for. All healthcare providers need to be aware of the unique needs of adults with CP. These adults themselves need to be informed what to expect as they grow older and shown ways to take responsibility for their personal health. Programs should be designed to promote lifetime fitness and prevention where exercise, good nutrition, weight control, stress management and energy conservation are stressed as well as ways to alleviate or manage chronic pain. Adults with CP need to advocate for their health, education, careers, and care, and to better understand an “inter-reliant” sense of independence. Participants want programs that provide options in managing their own care workers. Family support needs to foster independence and inter-reliance. Transition and implementation plans should begin in mid-adolescence and include care coordination of finances and the services of capable adult-centered healthcare providers. Future research could include studies exploring preventive health measures to minimize secondary disabilities and enhanced community accessibility.

Evidence-based practice has been adopted by the healthcare sector as a framework to achieve safer, scientifically defensible and cost-effective clinical care. Consistent with this framework is an increasing expectation for healthcare professionals to be evidence-based in relation to assessment. Evidence-based assessment uses research to guide tool selection and integrates the assessment tool findings with health professional expertise and family preferences, within the context of available resources. Evidence-based assessment tools can provide objective information about a child’s capabilities, strengths and difficulties, guide goal setting and interventions, and objectively evaluate outcomes and progress over time, thereby, potentially assisting families to anticipate future resources. Many assessment tools have been developed and evaluated psychometrically for use with children who have cerebral palsy. Routine use of evidence-based assessment tools can prevent and assist with the management of secondary musculoskeletal impairments and their sequelae for children with cerebral palsy. Despite the availability, promotion and reported benefits of use of many assessment tools, the uptake of evidence-based assessment tools by paediatric therapists (occupational therapists, physiotherapists and speech pathologists) in day-to-day practice has been slow. Outcomes from knowledge translation studies to embed use based on known barriers have been modest, suggesting further investigation is needed to understand why evidence-based assessment is not easily adopted in practice. The aim of this thesis was to develop an in-depth understanding of what is needed for therapists to embed evidence-based assessment tools for children with cerebral palsy into their practice. The research to achieve this aim addressed objectives related to: 1) the published literature; 2) understanding therapists’ assessment practices in different organisational contexts; and 3) the evidence-based assessment experiences of parents of children who have cerebral palsy. Three empirical studies were completed. A systematic review investigating the extent and types of assessment tools being used by therapists for children with cerebral palsy was conducted following PRISMA guidelines in Study 1. A mixed-methods approach was taken in Study 2 to investigate therapists’ assessment behaviours in two different Australianbased organisations. Findings from Study 2 suggested further investigation of the parent perspective would be helpful to fully understand therapists’ behaviours. A scoping review of the published literature preceded a qualitative study using interpretive description to understand parents’ experiences of evidence-based assessment for their child with cerebral palsy in Study 3. The systematic review identified that only a few of the available evidence-based assessment tools were used often, and all focused on gross motor function. The mixed method approach utilised in Study 2 confirmed therapists’ low overall use of evidence-based assessment tools, however, therapists’ use varied across organisations. Therapists’ assessment tool behaviours could be categorised on a continuum that ranged from I don’t to We do. Factors related to the organisation, the assessment tool and collaboration with families were influential. The ‘Cultural Cone for Evidence-based Assessment’ framework was developed, representing the relationships among contextual influences and therapist use of evidence-based assessment. Investigation of the assessment interactions from parents’ perspectives identified protection of child identity and self was central to parents’ experience of assessment. The interpretive description—the ‘Steering Wheel for Collaborative Assessment’—that emerged from the results suggests involving parents at the start rather than the end of an evidence-based assessment process is important. This thesis explored evidence-based assessment practices through the lens of organisations, practitioners and parents. Findings suggest knowledge translation strategies that align evidence-based assessment with family-centred care and focus on how evidence-based assessment tools are used with families is needed. This proposed shift in practice may make it easier for therapists to embed evidence-based assessment tools within therapy practice.

This dissertation examines the stigmatization of two health conditions: mental disability and physical disability in the context of China. In particular, it addresses two main themes: the processes and impacts of stigma, and the variables that moderate the association of stigma with social attributes. The first paper applied a qualitative approach to identify the sources of burdens of raising a child with cerebral palsy in China and how stigma and “face” as a cultural factor affect children with cerebral palsy and their families. The findings showed that families with children of cerebral palsy report tremendous financial burdens, insufficient educational and medical services, as well as discrimination among family members and communities. An overwhelming majority of caregivers reported to have had the feeling of “loss of face,” while family members considered the child with cerebral palsy as “useless” and “burdensome.” Their common remarks o “send away the child to orphanage” and “give another birth to a normal child”, reinforced caregivers’ feeling of helplessness, and put many family relationships to an end. The second and third papers on stigma and mental illness studied the underlying social determinants of public stigma and the variations in the general public’s attitudes and reactions toward people with mental illness. Using a population-based stratified sample of 3703 adults from the Stigma in Global Context-Mental Health Study, paper II investigated social attributes, stigma, and the links between them. Paper III assessed how demographics and geographical location structured public perceptions and reactions towards people with mental illness. Findings from paper II indicated that Chinese are less willing to interact with people with depression and schizophrenia than those with a physical illness. Depressive disorders had more rejections than schizophrenia in this study. Age, education, and place of residence among respondents had significant association with public stigma. The label of “mental illness” and perception of dangerousness had significant negative association on social stigma. Findings from paper III indicated that social distance had a significant association with regional context, which suggests that public stigma exists at larger cultural levels. Our findings help inform specific factors in the pursuit of tackling structural discrimination.

Purpose. The purpose of this study was to examine the effects of an intensive speech treatment for children with spastic cerebral palsy (CP). Background. Children with spastic CP have speech and voice disorders, which may limit functional communication and negatively impact quality of life. There are limited published outcome data on speech treatment approaches for these children. Recent advances in theories of motor development and behavioral gait and limb treatment provide a solid framework (consistent with theories of motor learning) from which to test different speech treatment concepts (e.g., intensive treatment, high effort exercises, repeated practice trials, and sensory augmentation/sensory awareness training) in children with spastic CP. Method. A multiple baseline single-subject design with replication across participants (five children with spastic CP) was used. Acoustic measures related to voice functioning, auditory-perceptual analysis of speech samples, and perceptual ratings by parents of participants in this study were obtained from baseline, post-treatment, and 6 week follow-up data recording sessions. Results. The four participants who received treatment demonstrated a marked change in performance on one or more of the acoustic measures and there were strong listener preferences for the treated speech samples (post-treatment or follow-up sessions) over baseline samples for most perceptual characteristics rated. In addition, parents of these four participants reported improved perceptions on two or more voice, speech, or communication characteristics following treatment, and all had an overall favorable impression of their child's treatment outcome and of the treatment approach used. No changes were observed in the one participant with CP who did not receive treatment. Conclusions. These findings suggest that in these four participants with CP, intensive speech treatment changed the output of the speech motor system in a manner that listeners preferred over baseline speech samples. In addition, this positive effect was maintained in nearly all cases 6 weeks after the conclusion of treatment. These findings are consistent with those in limb and gait treatment literature, thus highlighting potential key treatment concepts to consider in behavioral treatment for children with spastic CP.

The clinical motivation for this study arose from repeated observations that some children with cerebral palsy (CP), despite provision of equipment and support, were still failing to reach their expected communication potential. In the clinical field, this failure has been commonly viewed to be the result of physical dependence on adult partners, or linked directly to the children’s physical or learning disabilities, arising from the neurological and developmental deficits associated with CP. Social responsiveness and shared attention underpin language and communication development. Children with cerebral palsy (CP) may be vulnerable to disruption in the development of these foundation skills (Nordin & Gillberg, 1996). However, there are few guidelines for assessment of these skills in this group of children (Watson & Pennington, 2015). This current study aimed to: 1. develop an assessment protocol to support the identification of autism spectrum disorder (ASD) in children with CP at GMFCS levels IV and V; 2. compare the assessment tool (Gaze-NoTe) profiles of performance of children with CP with those seen in children with ASD and with children with Down syndrome (DS); 3. investigate any links, for the children with CP, between social communication deficits skills/deficits and performance on other measures of motor, language, visual and cognitive skills. The study included 57 children in these three groups, matched for age, language and non-verbal abilities. The children with CP (n=32) were screened for their ability to use looking behaviours to give responses (Clarke et al., 2016). A measure of social responsiveness/joint attention, (Gaze-NoTe), accessible by all three groups was derived from established assessments. Children with CP gave reliable responses to the tasks offered, and a range of skills was seen. Many children showed social responsiveness/joint attention skills at a level of development significantly below their language age/performance age, and the performance on the target measure Gaze-NoTe was significantly different across the three groups.

Cerebral Palsy (CP) football, despite global popularity for people with CP, is ultimately underdeveloped and competition standards are inconsistent around the world. Recent exclusion from the Paralympic games has emphasised its need for revitalisation and development on the international stage. The purposes of this research are first, to establish the value of CP football as an adaptive sport, and subsequently examine participatory and competitive determinants of success. The first study in this thesis examined anecdotal evidence of perceived physical, physiological, psychological and cognitive benefits within the team environment. Semi-structured interviews were conducted with participating members of the Western Australia CP Football (WACPF) program and personal experiences were examined using interpretive phenomenological analysis. The research identified improvements in all components of health outcomes investigated, including: lower-limb strength, flexibility, stamina, body composition, walking and running ability, confidence, self-esteem, physical self-efficacy, happiness, acceptance of disability, social skills, teamwork ability, sense of belonging, leadership skills, feeling of acceptance, motor coordination, football-related tactical awareness and spatial awareness. The second study monitored training and competition time-motion analyses of the WACPF over two seasons, as well as measures of fitness and anthropometry. Normative values of height, weight, speed, agility, vertical jump height, aerobic capacity, as well as training and competition loads measured in relative heart rate zones and speed thresholds, were established. No significant differences were found between training and match demands, thereby demonstrating training specificity. The third and fourth studies investigated the goal-scoring characteristics in sub-elite and elite CP football via performance analysis of the Australian and World Championships in 2017 and 2018 and chi-squared analyses of goals scored in open play were compared. Goals were predominantly (>85%) scored in open play and from the middle front third (88%). The critical pass through the last line of defence was identified to be an effective method in creating goals. Organised build-ups using four or less passes presented the most successful method of ball delivery. Coaches and support staff in CP football should structure programs based on findings to create a stimulating and effective team environment. Additionally, game-based training and the establishment of an elite pathway is recommended to all CP football programs.

This thesis is framed within the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). As such, the four studies that comprise this thesis are viewed and reported according to the ICF-CY domains of Body Structure and Function, Activity, Participation and Environment. Children with Cerebral Palsy (CP) have a higher incidence of sleep disturbance than children without CP, with a diverse and complex range of issues affecting their sleep. Sleep disturbance has serious impact on children’s physical and mental health, development, daytime function and well-being, and that of their caregivers. Management of body temperature is frequently identified as an issue affecting sleep of children with CP. The functions of sleep and body temperature regulation occur due to a synchrony between physiological function, activity and the environment. The use of selected bedding materials is one possible way to manage children’s sleep environment. While there are bedding materials commercially available which claim to address this need, there is no reported information to guide clinical practice in this area. Thus, the overall objectives of the four research studies contained within this doctoral thesis were to examine the patterns of skin temperature and sleep in school aged children, and to understand the effects of ‘thermobalancing’ bedding, using dynamic phase change materials, on sleep and daytime function of children with CP within their everyday settings...

Objectives: To describe the 'activities and participation' of children with cerebral palsy, as defined by the International Classification of Functioning, Disability and Health (ICF), using family-assessed instruments. Methods: A structured review of family assessed instruments appropriate for measuring children's activities and participation was undertaken to identify questionnaires for use in a postal survey. The survey involved a geographically-defined population of children with cerebral palsy between 6 and 12 years old, identified from the 4Child database in Oxford. Indices of children's 'activities and participation' were families' assessment of the Gross Motor Function (GMFCS) and Manual Ability (MACS) Classification Systems, the Activities Scale for Kids (ASK) and Lifestyle Assessment Questionnaire (LAQ-CP). To determine the reliability of families' assessments their classifications of the GMFCS and MACS were compared to ratings made professionals; the response frequencies and internal consistency of the ASK and LAQ-CP scales were also examined. Details of children's impairments and abilities were then used as explanatory variables in multiple regression analyses to identify the effect of disability on children's activities and participation. Results: Families of 129/314 (41%) of the children fully participated in the survey and 175/314 (56%) provided a classification using the GMFCS. These children did not differ from children who did not take part by age, gender or characteristics of their cerebral palsy and associated impairments. Although there was not always perfect agreement the families' classifications of children's movement and manual abilities using the GMFCS and MACS were highly reliable compared to those of health professionals (ICC>0.9). Analysis of the ASK and LAQ-CP showed these also to be reliable. Scores for the ASK and LAQ-CP were generally best predicted by children movement, manual and intellectual disability. Conclusions: Family assessment of children's movement and manual abilities using the GMFCS and MACS was highly reliable compared to health professionals. In concordance with similar studies that used professionally-assessed measures, children's activities and participation were most adversely affected by movement, manual and intellectual disabilities. Family assessment offers a highly reliable method for measuring activities and participation; however currently available instruments do not fully represent all the domains in the ICF.

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.

Despite the popularity of home program interventions there is little evidence to demonstrate effectiveness, particularly when an explicit family centred framework is adopted. This single-group pre-post design study evaluates the impact of a standardised occupational therapy home program implemented with a group of 20 children (2-7 years, mean age 3.8)with spastic hemiplegic cerebral palsy. The study measured the effect of the program using: goal attainment scaling(GAS);pediatric evaluation of disability inventory (PEDI); and quality of upper extremity test(QUEST). In addition, parent participation intensity was measured through a home program log. The use of a standardised occupational therapy home program for children with cerebral palsy is recommended as an effective method to achieve therapy goals. Further research using more rigorous designs is required to fully explore treatment efficacy.
Master of Science (Hons.)

Cerebral palsy (CP) is the most common cause of physical disability in childhood. Multilevel orthopaedic surgery is a key component in the clinical management of musculoskeletal pathologies in CP with the choice of surgical intervention being guided by physical exam, patient history, medical imaging and gait analysis. Clinical 3D gait analysis in particular has become an important diagnostic tool, but these methods do not provide direct objective information to assist with planning of complex surgical procedures. Contemporary approaches use anatomical musculoskeletal models that allow the calculation of muscle-tendon lengths, muscle-tendon moment arms and joint contact forces, which might improve the clinical decision-making in children with CP. Before these contemporary approaches can be used with confidence in a clinical setting it is necessary to determine whether they provide accurate and reliable kinematic results, which was the main focus of this thesis. The first study compared the joint kinematics obtained by the conventional clinical gait model with those produced by a widely used contemporary musculoskeletal model, and determined the contribution of different anatomical models, computational methods and marker sets on joint kinematic differences using anatomical models developed from magnetic resonance images (MRI). MRI and 3D motion capture data were collected from eight children with CP. Kinematic differences of up to 13° were found between the traditional and contemporary gait models, with 94% of these differences attributed to differences in the anatomical models. Conversely, the Direct Kinematics (DK) versus Inverse Kinematics (IK) computational methods and different marker sets only had a minor impact on joint kinematics.
Thesis (PhD Doctorate)
Doctor of Philosophy (PhD)
School of Allied Health
Griffith Health
Full Text

Cerebral palsy (CP) is the most common cause of physical disability in childhood. Today, most children with CP survive into adulthood with life expectancies similar to typically developing (TD) adults. One of the biggest challenges during the lifespan of individuals with CP is healthy aging; to prevent or minimize the secondary effects of CP on the musculoskeletal system (e.g. bone deformities due to spasticity) as well as to improve functional status and quality of life. There is currently no treatment that is able to cure the brain damage which causes CP, but a variety of options exist to address spasticity, the most prevalent primary condition which is estimated to be present in 80% of people with CP. One of these options is the neurosurgical procedure of Selective Dorsal Rhizotomy (SDR) which entails selective sectioning of dorsal rootlets in the lumbosacral area, diminishing spasticity through reducing muscle tone. SDR gained increasing acceptance following the work of Peacock and Arens in the 1980s, and although a large number of studies have demonstrated the benefits of this procedure, they largely comprise relatively short-term follow-up assessments in children and adolescents. There is thus a need for long-term follow-up studies focussed on all facets of daily living (International Classification of Function, Disability and Health (ICF) model domains: body structure and function, activity and participation) and quality of life in adults with CP who underwent SDR in their childhood. The aim of this doctoral thesis was to address this need, and provide information that might help guide parents, caregivers and clinicians in their clinical decision-making process for a child with CP. This aim was addressed through three key investigations. First, the status of adults with CP and spastic diplegia - related to all domains of the ICF-model and health-related quality of life - was determined more than 25 years after SDR. Second, changes in gait pattern, spinal deformities and level of activities and participation in adults with CP were determined nine years after a similar assessment. Third, associations between results in the different ICFmodel domains along with personal and environmental context factors. This PhD thesis forms part of a longitudinal investigation tracking the health and wellness of adults with CP. The former studies were performed in 2008 and consequently a recent follow-up was conducted in 2017 in the same CP cohort. All participants underwent SDR according to the Peacock method (strict selection criteria were adhered) at Red Cross War Memorial Children’s Hospital in Cape Town, South Africa, between 1981 and 1991. This PhD thesis is based on four studies, with the first being a cross-sectional study conducted in 2017 (Chapter 2) and the other three are nine-year follow-up studies (comparing findings in 2017 with studies conducted in 2008 (Chapter 3 - 5). Each study included a matched TD group, except for the spine study (Chapter 4). Participants were observed and assessed for functioning, health, disability and quality of life based on a physical examination, gait analysis, functional mobility tests, spine radiographs and several questionnaires. With respect to the ICF-model Body structure and function domain, adults with CP showed sustained reduction in muscle tone and minimal signs of spasticity in their gait pattern, with no increased prevalence of scoliosis, hyperkyphosis or hyperlordosis, and did not experience limitation of daily activities due to pain. Some challenges were found regarding ROM, muscle strength, selectivity and back pain but they were comparable with what would be expected in adults with CP who did not undergo SDR. Concerning, the Activity domain, the majority of the cohort was independent in functional mobility and the accomplishment of daily activities with no increased risk for falls. They were as satisfied with accomplishing daily activities as the TD adults, though as might be expected, they were found to be less content with their level of mobility. Regarding Participation domain, the adults with CP greater than 25 years post-SDR were independent and satisfied with their attainment of social roles. Most were married or had a relationship, lived independently (with or without partner), finished higher education and were engaged in paid employment. The perceived health-related quality of life was similar to that of TD adults in most of the health concepts (physical role functioning, bodily pain, general health, vitality, social functioning, emotional role functioning and mental health), except for physical functioning. No increased prevalence of anxiety and depression was found, which was in line with the reported mental health findings of the health-related quality of life questionnaire. This suggests that while adults with CP have on-going physical challenges following SDR, this might not directly impact their mental health and levels of anxiety and depression. The majority of the cohort viewed the SDR they had undergone as worthwhile due to mobility and functional walking gains. Importantly, no changes were found over the nine-year interval in overall gait, functional mobility, spinal deformities, pain and level of accomplishment and satisfaction in daily activities and social participation. This indicates stability of function which is remarkable since functional decline might be expected in adults with CP while aging. However, correlations were found between functional mobility and daily activities and social participation as well as between functional mobility and strength. This highlights the possible importance of resistance training and maintaining walking ability to enable daily activities and social participation and prevent functional deterioration in the future.

Cerebral palsy is an occurrence in which the nerves and muscles if the body may function properly, but there is damage to the brain that causes it to transmit incorrect electrical impulses to the muscles including both too many and too few signals. Without the correct cohesive electrical impulses to balance the opposing muscles of a joint, normal everyday tasks that most of us take for granted become very difficult to learn and perform. As exoskeletons become more advanced and practical, their applications have a lot of room for growth. Cerebral Palsy is one portion of the medical field that can benefit from the development of exoskeletons. As demonstrated with modern rehabilitation techniques, the application of an exoskeleton has the possibility of making the learning process and performance of many tasks easier and faster for both the patient as well as the doctor working with them. However, in order to appropriately apply the technology to the need, many changes in both the controls and the actual physical design of current devices need to be addressed.

An exoskeleton for the purpose of helping cerebral palsy patients learn to walk is not limited to one specific form depending on the complexity of the tasks it is desired to assist with. However, there are a couple needs of this type of exoskeleton that are absolutely necessary. The size of the exoskeleton must be designed around the size of a child and not an adult. If the individual is learning to walk from the very beginning, the controls of the device will need to initially be able to take complete control over the individualâ s limbs to exercise the motions of walking. With the nature of an exoskeleton controlling the limbs of a person instead of simply assisting with current movements, the physical attachments of the exoskeleton must be improved from current designs in order to make movements of the exoskeleton and the body more parallel. Other features such as different muscle sensing techniques may also improve performance, but are not required. An exoskeleton that can help cerebral palsy patients learn to walk can also be applied to many other rehabilitation needs.
Master of Science

Aim: The aim of this study was to investigate weight-bearing characteristics in young adults with CP compared to young healthy adults in both quiet and relaxed standing. Methods: Two standing conditions were tested, one minute quiet standing (QS) and one minute relaxed standing (RS) in both groups. Data were collected with two Kistler force plates and a video camera. Weight-bearing asymmetries, shifts in weight bearing and CoP movements under each foot were calculated in Matlab, and PSAW Statistics was used for statistical analysis. Results: There were large individual differences in weight bearing characteristics between feet in both CP participants and control participants. In the QS condition, the CP group had equal weight on both feet in average across the trial, a trend towards a higher asymmetrical weight bearing index (p=.08), and larger movements of CoP under each foot than the control participants. In the RS condition, the CP group had no difference in weight bearing between the feet, more shifts in weight bearing in the form of steps, and less asymmetrical weight bearing index than the control group. Also, the CP participants had more CoP movements on their non-affected side than the controls had on their dominant side, and less CoP movements on their affected side than the controls had on their non-dominant side. Conclusion: CP participants have several different strategies for maintaining upright standing posture, varying from largely relying on their non-affected side for weight support, to standing almost symmetrical, to supporting more weight on their affected leg. Even though CP participants have more asymmetrical weight bearing in quiet standing compared to controls, this is not the case in relaxed standing where controls are more asymmetrical. This study provides more insight into relaxed standing and the strategies CP patients use to maintain an upright standing posture. Future studies should investigate the prevalence of postural asymmetry in a larger sample of patients, for a longer period of time, and how possible findings can be used in treatment of this patient group. Key words: Cerebral palsy, quiet standing, relaxed standing, weight-bearing asymmetries, shifts in weight-bearing, center of pressure.

Cerebral Palsy is a complex, non-progressive condition that manifests in various forms of motor impairments. This life-long condition holds numerous challenges for the entire family throughout the family life-cycle. While the challenges that these families have to face are many, families seem to have the ability to "bounce back" and to be resilient. Research on the construct of resilience and more specifically family resilience has increased in recent times. South African family resilience research is relatively limited. This study aimed to identify, explore and describe the resiliency factors that facilitate adjustment and adaptation in families that include a child living with Cerebral Palsy. The Resiliency Model of Family Stress, Adjustment and Adaptation was used to conceptualise the level of family adaptation. The study was triangular in nature, with an exploratory, descriptive approach. Non-probability purposive and snowball sampling techniques were employed. The sample consisted of 30 female caregivers. Biographical questionnaires with two open-ended questions, in conjunction with seven structured questionnaires were used to gather the data. Descriptive statistics were used to analyse the biographical information. Correlation and regression analysis was used to analyse the quantitative data, while content analysis was used to analyse the qualitative data. The results of the quantitative component of the study indicated five significant positive correlations with the FACI8. These variables were family hardiness (measured by the FHI), family time together and routines (measured by the FTRI), social support (measured by the SSI), relative and friends support (measure by the RFS), and spiritual support (measured by the F-COPES). The results of the qualitative analysis revealed that social support, the caregivers' acceptance of the condition, and spirituality and religion were the most important strength factors that contributed to the families' adjustment and adaptation. Although the sample was small and the study has limitations, it could be used as a stepping-stone for future research on resilience in families living with a child with a physical disability and will contribute to the broader context of family resilience research in South Africa.