Dissertations / Theses on the topic 'Cerebral palsy Hemiplegia Cerebral palsy'

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 is a non-progressive disorder associated with brain injury, defect, or disease, of early onset. Emphasis is placed on the more easily observable motor deficits, with any underlying sensory deficits often being overlooked. Existing sensory assessments have either been standardized on an adult population or for a paediatric population without significant neuromotor impairment. Thus, there is a need to formulate a standardized sensory assessment battery that may be used to evaluate physically handicapped children. A review of the literature highlights the necessity to evaluate the presence and extent or sensory dysfunction in school-age hemiplegic children, using a standardized clinical sensory assessment battery, as well as somatosensory evoked potentials.
A reliable sensory battery, which assesses 5 sensory modalities, was formulated and normative data for school-age children was derived. Sensory function was evaluated in 9 hemiplegic children (4-19 years) and 18 healthy age-matched controls. Significant bilateral sensory deficits were documented in hemiplegic children. Thus a sensory assessment should be an integral part of the evaluation of a child with hemiplegia.

Thesis (Ph.D. in Clinical Science) -- University of Colorado at Denver and Health Sciences Center, 2006.
Typescript. Includes bibliographical references (leaves 58-61). Free to UCDHSC affiliates. Online version available via ProQuest Digital Dissertations;

One new treatment strategy for children with hemiplegic cerebral palsy (CP) is constraint-induced movement therapy (CIMT). CIMT combines restraint of the less affected upper extremity and intensive exercise with the affected limb. CIMT has been shown to be effective in adults following stroke but it is not clear whether or not CIMT can readily be incorporated into clinical practice either with adults or children. An intervention that may be more practical involves the restraint element of CIMT without additional exercise (Forced use therapy-FUT). FUT has been only sparsely investigated, especially in children with CP. Different versions of CIMT protocols have been suggested as being „child-friendly‟ but identifying a practical and effective protocol remains challenging. Part of a child-friendly protocol includes identification of the most appropriate type of constraint, as different splints have been used for different populations without justification of their selection. In this project, the aim was to identify the most appropriate splint from children‟s and parents‟ perspective as reflected by effectiveness and adherence to home-based FUT (feasibility study) and to investigate the functional effects of a modified version of CIMT (mCIMT) (effectiveness study) that was designed based on the findings of the feasibility study. A further aim of the study was to compare the effect of additional functional activities and feedback with constraint alone. Two questions emerged as being important during the course of the project; the first addressed poor recruitment to the effectiveness study and explored parents and therapist‟ views on the practicality and effectiveness of both the classic paediatric protocol and the one suggested by the present study. The second was to provide insight into the physiological effects of CIMT or other treatments that might explain variations in response. In this study a test using the lateralised readiness potential (LRP) component of the EEG that was appropriate for young children was developed and evaluated with a small sample of unimpaired children and children with CP.

The computational musculoskeletal models that are used to study muscle moment-generating capacities of persons with movement disorders and planning treatment options must be accurate, and take into account the inter-individual variability of musculoskeletal geometry. In Paper I the methods of creating the subject-specific musculoskeletal model of the lower extremities from magnetic resonance images (MRIs) were developed. The subject-specific model was used to analyze hip, knee and ankle muscle moment arms (MALs) and muscle-tendon lengths (MTLs) during gait in a subject with unilateral cerebral palsy (CP), and to evaluate the accuracy of widespread and commonly-used scaled generic model. It was found that the scaled generic model delivered accurate values for changes in MTLs in most muscles. However, the scaled generic and the subject-specific lower extremity musculoskeletal models showed substantial differences in MALs calculated during gait. In Paper II subject-specific musculoskeletal models of nine subjects with unilateral CP were created to study muscles volumes, MTLs and MALs; and to examine the accuracy of MALs calculated by the scaled generic models. It was shown that the scaled generic model significantly underestimated hip MALs discrepancies between the affected and the non-affected sides of the lower extremities. However, it significantly overestimated hip adduction/abduction of gluteus maximus, gluteus medius, gluteus minimus, tensor fascia latae and biceps femoris long head; and hip flexion of adductor longus and rectus femoris in the affected and the non-affected sides. It was also found that muscle volumes and hip abduction MALs in gluteus medius and gluteus minimus, hip flexion MALs in iliacus and hip rotation in gluteus maximus were smaller in the affected side of lower extremities. MTLs in the affected and the non-affected sides throughout the range of hip motion were similar. This thesis suggests the need for the subject-specific musculoskeletal models that can account for variability of muscle attachments and musculoskeletal geometry of persons with movement disorders. Based on inaccuracies of the scaled generic model reported here, the generic models that are used to guide treatment decisions must be tested, and interpreted with care.
QC 20110901

Hypotheses: 1) Executive Function (EF) in children can be improved by action video games training. 2) Improvement of EF can enhance hand motor function. Aims: 1) To determine whether children who play Video Games (AVGPs) exhibit similar enhancement of EF as has been reported in adults; 2) To study the effect of action video game genre training on EF and hand motor function for Typically Developing (TD) children; 3) To study the effect of AVG training on EF and hand motor function for children with Hemiplegic Cerebral Palsy (HCP). Methods: Aim1:154 TD children aged 6-12 years participated in a cross-sectional study; Aim 2: 40 Non-Action Video Game players (NAVGPs) aged 8-12 years were randomized to training with AVG or NAVG, in a double blinded study of the effect of AVG training on EF; Aim 3:9 children with HCP aged 8-12 participated in a pilot study, open intervention study of the effect of AVG training on EF and hand function. EF was assessed using Cambridge Neuropsychological Test Automated Battery (CANTAB) and hand motor function was assessed using Tyneside 9 holes pegboard. In addition, Assisting Hand Assessment (AHA), Melbourne Assessment 2 (MA2), and Chedoke Arm and Hand Activity Inventory (CAHAI) were used for children with HCP. Results: EF and hand motor functions were superior in children playing AVGs compared to children who play NAVGs only. Action video game training for 50 hours over 8 weeks significantly improved EF in TD children compared to those training with NAVGs. AVG training was associated with significant improvement in EF in children with HCP. Hand motor function did not show significant improvement after training. Conclusion: Action video game training can enhance EF in TD and should be investigated further to assess if it has a therapeutic role in improving EF and dexterity in children with HCP.

Transcranial direct current stimulation (tDCS) is a non-invasive stimulation technique that modulates brain function by increasing or decreasing cortical excitability (Nitsche & Paulus, 2001). In chronic stroke patients tDCS has been shown to improve function of the affected arm when combined with rehabilitative motor training (e.g. Lindenberg et al., 2010) and thus has the potential to accelerate motor learning. Its potential as a treatment for upper limb function in hemiplegic cerebral palsy (CP) had not been explored, which was the principle aim of this doctorate. After literature reviews on CP and tDCS (Chapter 1) feasibility work in healthy subjects was conducted to develop and validate the experimental procedures (Chapters 2 to 5). Chapter 2 examined whether tDCS improved motor performance of the non-preferred hand in healthy right-handed adults. The sophisticated kinematic outcome measures detected changes in performance due to learning, but no effect of tDCS was found. In Chapter 3, a novel motor learning task was developed and validated in healthy children and adolescents. This task was added to the study protocol and using a revised study design tDCS was found again to have no benefit on either motor performance or motor learning in healthy adults (Chapter 4). Tolerability, perception and acceptance of electrical stimulation were explored in Chapters 5 and 6, with the former showing that tDCS was well tolerated by healthy adults. Using a qualitative research methodology Chapter 6 established that teenagers with CP and their parents had concerns over the application of electricity on the scalp and how little is currently known of tDCS effects in CP. In Chapter 7, tDCS was applied to a teenager with hemiplegic CP with no clear beneficial effects. Finally, the contribution of this doctoral work with regard to the use of tDCS for the rehabilitation of motor function in CP is discussed in Chapter 8.

[Truncared abstract] Introduction: The assessment of any therapy requires not only an understanding of how that therapy works but also how it affects health related quality of life (HRQOL). Botulinum Toxin A(BoNT-A) therapy for upper limb spasticity management in children with hemiplegic cerebral palsy(CP) is currently under trial. Despite its use for over a decade for lower limb spasticity, little is known about the mechanisms involved in improving motor function and the effect on the child and their familys HRQOL. Both central and peripheral mechanisms are hypothesised[1]. Whilst evidence of improved quality of movement and ability to perform tasks is emerging[2-4], this cannot be directly correlated with an improvement in HRQOL. In addition, the traditional method of assessing child HRQOL by parent proxy reports has come under question[5, 6]. The World Health Organisation now recommends the collection of both parent proxy and child self-reports[7]. Aims: 1. Investigate the corticomotor projections to the upper limb in school aged children with hemiplegic CP and the changes that occur with BoNT-A therapy by transcranial magnetic stimulation (TMS). 2. Investigate the effect of upper limb BoNT-A therapy on HRQOL of school aged children with hemiplegic CP by completion of the PedsQL 4.0 Generic Core Scales and 3.0 CP Module. 3. Determine the concordance between Child Self-Report and Parent Proxy Report scores for the PedsQL 4.0 Generic Core Scales and 3.0 CP Module. 4. Determine the concordance between PedsQL scores and function as assessed by the Melbourne Assessment of Unilateral Upper Limb Function (MUUL). Methods: Design: Prospective randomised pilot study. Setting: Department of Paediatric Rehabilitation, Princess Margaret Hospital, and Centre for Neurological and Neuromuscular Disorders, Perth. Participants: 22 school aged children with hemiplegic CP aged 7yr 0mth-13yr 11mth (12 treatment, 10 control). 3 Treatment: One episode BoNT-A injections (dose 1-2U/kg/muscle) into the upper limb for treatment group. The control group received usual care. ... Conclusion: This pilot study provides preliminary evidence of the effects of upper limb BoNT-A therapy at both a central physiological and a broader quality of life level in school aged children with hemiplegic CP. At a central level, corticomotor pathway reorganisation occurs in the setting of BoNT-A. However the reorganisation is not limited to the affected side pathways suggesting a systemic BoNT-A effect or developmental changes. Similarly, in this pilot study, there was no statistically significant effect of upper limb BoNT-A on the childs HRQOL as assessed by the PedsQL although positive trends were observed 4 for a number of physical and psychosocial domains. The collection of both child self-report and parent proxy reports when assessing HRQOL is recommended, and function needs to be assessed independently. Larger studies across the broader CP population, the design of CP specific HRQOL tools appropriate for use in the higher functioning CP cohort, and alternative better tolerated methods of investigating the motor system in children with movement disorders are recommended.

Syfte: Syftet med studien var att beskriva arbetsterapeuters erfarenheter av att använda sig av CI-terapi som intervention för barn med hemiplegisk cerebral pares. Metod: En kvalitativ ansats valdes för att beskriva arbetsterapeuternas subjektiva upplevelser. Åtta semistrukturerade intervjuer genomfördes med arbetsterapeuter som arbetade på barn- och ungdomshabiliteringar i landet och analyserades därefter utifrån kvalitativ innehållsanalys. Resultat: Den insamlade datan resulterade i fyra kategorier: Arbetsterapeutens stöd; Nätverkets betydelse; Anpassning av interventionen samt Organisatoriska strukturer. Resultatet visade att interventionen bör utgå från barnets motivation och lek i samverkan med barnets nätverk samt att interventionen mestadels bidrog till att barnet fick en utökad aktivitetsrepertoar. Vidare beskrevs att interventionen utfördes endast av några arbetsterapeuter runt om i landet då den är tidskrävande, kräver resurser och en tydlig struktur. Det framkom även att kollegialt stöd bland arbetsterapeuterna främjar genomförandet av CI-terapi. Slutsats: I studien framkommer att barnets aktivitetsrepertoar mestadels förbättrades med CI-terapi men kunde inte påvisas med nuvarande bedömningsinstrument.
Purpose: The aim of this study was to describe occupational therapists’ experience of using Constraint Induced Movement Therapy for children with hemiplegic cerebral palsy. Methods: A qualitative method was chosen to describe the subjective experiences of the occupational therapists. Eight semi structured interviews were conducted with occupational therapists that were working at different centres for child and adolescent rehabilitation in this country, thereafter the collected data was analysed using qualitative content analysis. Result: The results were divided into four categories: The occupational therapist’s support, The importance of the network, Adaptation of the intervention and The organisational structures. The result indicate that the intervention should be centred on the child’s motivation and play in collaboration with the child’s social network and the intervention usually leads to an extended activity repertoire for the child. Furthermore, the result indicates the intervention to be time consuming, demanding extensive structure and resources, which led to the intervention was performed by only a few occupational therapists. It also appeared that collegial support among occupational therapists promotes the implementation of Constraint Induced Movement Therapy. Conclusion: The study show that the child’s range of activities often were improved when using Constraint Induced Movement Therapy, but this could not be proven with today’s assessment instrument.

Includes bibliographical references (p.181-200).
Background: Balance and postural control are an integral part of gross motor function in activities of daily living. Studies have shown that children with hemiplegic cerebral palsy have poor directional specificity as well as problems with the temporal and spatial modulation of appropriate muscle action in response to balance perturbations. Children with hemiplegia have also been shown to develop direction-specific postural control at a slower pace than typically developing children. Apart from their postural muscle coordination problems, these children have difficulties with sensory integration which contributes to increased reaction time. Research on balance training in children with cerebral palsy has demonstrated that improved balance translates into more effective gross motor function. It appears that postural control mechanisms are still modifiable for children with cerebral palsy even in elementary to middle school ages. Physiotherapy treatment for children with cerebral palsy should therefore involve balance training as a focus of intervention. Literature on balance control and virtual reality rehabilitation justifies investigating the use of a commercially ~vailable gaming system, such as the Nintendo Wii Fit, as a rehabilitation tool to improve balance control and therefore gross motor function in children with cerebral palsy. Objective: To determine the effect of an intervention with the Nintendo Wii Fit on the balance control and gross motor function of children with spastic hemiplegic cerebral palsy.

Includes abstract.
Includes bibliographical references (leaves 108-119).
The equinus ankle is one of the most treated conditions of the ankle and foot. Previous studies have investigated the lower limbs in children with either the diplegic (D-Group) or hemiplegic subtypes (H-Group) of cerebral palsy (CP). Children presenting with diplegia have been reported to have crouched knees (knee in flexion deformity) and an equinovalgus, while children with hemiplegia tend to have genu recurvatum (over extended knees), ankle equinovarus and a shorter affected limb (AL) than the unaffected limb (UL). No study has specifically compared the impairments related to the equinus ankle between the subtypes of CP. In addition, treatment outcomes for the management of the equinus ankle have not been satisfactory documented and there may be crucial differences in the parameters related to the equinus ankle between the D-Group and the H-Group.

Foi comparada a massa óssea e a composição corporal dos hemicorpos dominante e não dominante de um grupo (A) de 16 pessoas com paralisia cerebral com hemiplegia espástica, e de um grupo (B) de 29 voluntários normais por meio da mensuração da massa corporal, estatura e densitometria óssea do corpo total com composição corporal. Foi encontrada diferença estatística significante no conteúdo mineral ósseo dos membros superiores do grupo A e dos membros superiores e inferiores, tronco e total do grupo B; na massa magra dos membros inferiores do grupo A e dos membros superiores e inferiores, tronco e total do grupo B; na massa adiposa dos membros inferiores do grupo A e dos membros superiores e inferiores, tronco e total do grupo B; e no conteúdo mineral ósseo dos membros superiores e inferiores, e total e na massa magra dos membros superiores e inferiores entre os hemicorpos não dominantes dos grupos A e B. Foi encontrada também correlação estatística significante entre o conteúdo mineral ósseo e a massa magra nos grupos A e B em todos os sítios, exceto no tronco dominante do grupo A; e o conteúdo mineral ósseo e a massa corpórea no tronco dominante do grupo A e no membro inferior dominante e bilateral do grupo B
Were compared the bone mass and body composition of the dominant and nondominant hemi bodies in a group (A) of a 16 spastic hemiplegic cerebral palsy and in a group (B) of 27 normal volunteers by weight, height, and densitometry of total body with body composition measure. Were observed significant statistical difference in the bone content mineral of the upper limbs of the group A and of the upper and lower limbs, trunk and total of the group B; in the lean mass of the lower limbs of the group A and of the upper and lower limbs, trunk and total of the group B; in the mass fat of the lower limbs of the group A and of the upper and lower limbs, trunk and total of the group B; and in the bone mineral content of the upper and lower limbs, and total, and in the lean mass of the upper and lower limbs between the hemi bodies no dominant of the A and B groups. Were observed too statistical correlation between the bone mineral content and lean mass in the groups A and B in all locals, except in the trunk of group A; and between the bone mineral content and body mass in the trunk of group A and lower limb dominant and bilateral of group B

Constraint induced movement therapy (CIMT) which is supported by motor learning theory has demonstrated promising results in improving upper limb function in hemiplegic cerebral palsy (HCP). However, its effectiveness within the NHS where children in the UK usually receive their therapy is little understood. To provide clarification, the author conducted a randomised controlled trial (n = 62) in 16 NHS paediatric community therapy services which compared the feasibility and effectiveness of a novel approach (prolonged restraint) of CIMT with usual NHS practice, in the young child with HCP. The primary outcome was bimanual performance measured with the Assisting Hand Assessment (AHA). Immediately post-intervention both groups changed and although there was not a statistically significant group difference the prolonged restraint methodology resulted in a larger effect (0.5 versus 0.2). The novel approach was safe, feasible, and acceptable to families and a more effective method of treatment delivery. The trial findings were combined in a systematic review and meta-analysis with a similar study and a treatment effect of 0.92 AHA logits was demonstrated. This is compatible with the smallest detectable difference (0.97 logits) indicating actual change in bimanual performance. The short-term efficacy, excellent recruitment and retention rates and acceptability of the trial procedures provides support for the trial feasibility and the need for a definitive investigation.

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.

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.

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.

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.

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.

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.

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.

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.

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.