Parenting is inherently stressful at times and several studies have shown that being a caregiver of a child who is disabled is even more stressful. A number of studies have tried to identify demographic and psychosocial variables which are predictive of parenting stress levels. It is obvious from these studies that parenting stress is complex as there is no general consensus as to what the factors are which exacerbate or mediate parenting stress in caregivers of children who are disabled. The aim of this study was therefore to assess the parenting stress levels of caregivers of children who are disabled and to try to establish whether the level of the child’s disability influenced parenting stress levels. Further objectives were to ascertain whether various psychosocial and demographic variables were predictive of parenting stress levels. In order to meet these objectives the Parenting Stress Index/Short Form was sent to caregivers of children with cerebral palsy who were attending Frances Voorweg School in Johannesburg. Caregivers also completed a demographic questionnaire. The severity of disability of the children was classified using the Gross Motor Function Classification System. Thirty-five parenting stress questionnaires were returned to the researcher. Means and frequencies were used to summarise the demographic data. T-tests were performed to establish whether there was any significant difference between the parenting stress levels of caregivers of children who were more functionally disabled and those whose children were less disabled. Pearson’s correlations were used to determine whether there was any correlation between demographic variables and parenting stress levels. The parents of the children in the sample showed clinically significant, and in many cases, pathological levels of parenting stress. This stress was however, not in anyway influenced by the severity of their children’s disabilities. The only variable that correlated strongly to the level of parenting stress was found to be the income level of the family (r=0.8). The results of this study confirm that parenting stress is complex and that it is not a simple matter to predict the parenting stress levels of caregivers of disabled children. Therapists should evaluate the needs of each family individually and follow a family centred approach when managing children with cerebral palsy.

Background No data exist about caregivers’ beliefs surrounding a diagnosis of cerebral palsy (CP), its causes and how this influences caregivers’ perceptions of therapy in poorly-resourced South African settings. Neither is there any information about how rehabilitation therapy influences the life of the child or the caregiver. The appropriateness, the outcomes and the effectiveness of therapy for children with CP in a South African setting have not been studied. Numerous tools and scales for measuring outcomes of rehabilitation relating to both the child and the caregiver are available internationally but none have been validated for use in South Africa. Caregiver-related outcomes were the focus of this study and included maternal well-being and mental health, personal quality of life, availability of support and interaction with the child. These are factors known to potentially be influenced through contact with rehabilitation services. Aims The aims of this study were firstly to ascertain whether caregiver-related outcome measures developed in high-income settings were appropriate for a poorly-resourced South African setting; and secondly, to describe parental perceptions and experiences of rehabilitation therapy received in public service hospitals in disadvantaged areas. Methodology The study was undertaken in two phases. Phase One was a quantitative cross-sectional, analytical study and addressed the first aim. Five scales were identified from the literature as being suitable for measuring the caregiver-related outcomes of interest in this study: the Caregiver-Child Scale, the Family Support Scale, the Personal Quality of Life Scale, the Mental Health Subscale of the Medical Outcomes Study (MOS) Short-form 20 Health Survey, and the Measure of Processes of Care (MPOC) Scale. The first four scales measure aspects of maternal well-being and interaction with the child whilst the MPOC assesses caregivers’ reported experiences of family-centred behaviours of rehabilitation service providers. These scales were modified and adapted to make them relevant to a South African setting through a process that included focus groups with caregivers and experienced therapists. After the modified scales had been translated into six local languages and then back-translated into English, the translators, researcher and interviewers met to discuss discrepancies between the two versions (the original modified English version and the back-translation) and to reach consensus on the final translation. The scales were further refined during a pilot study where two trained interviewers administered the modified scales to 24 caregivers of children attending public service hospitals for therapy. Items in the scales which were confusing for caregivers or which they found difficult to understand were clarified. In addition, where necessary, concrete examples were given of the type of behaviour or action being asked about in the scale. Following the pilot study, two trained interviewers administered the modified scales to a convenience sample of caregivers attending rehabilitation therapy in public service hospitals in Gauteng and Limpopo. The reliability and validity of each scale was assessed using multi-trait scaling and factor analysis. Phase Two employed qualitative methodology to address the second aim of the study. A purposive sample of 24 information-rich caregivers attending therapy in public service hospitals in Gauteng and Limpopo participated in one of five focus groups. The discussions were conducted in local languages. Taped recordings were transcribed and translated into English before being analysed using a grounded theory approach. Results Two hundred and sixty three caregivers from 31 hospitals in Gauteng and Limpopo provinces were interviewed during the first phase of the study. The mean age of their children was 3.3 years (± 2.6).Two-thirds of the children (66%) had severe limitations in motor function and few (15%) could communicate verbally. Only one of the five scales, the Mental Health Subscale, proved to be both reliable and valid in South African settings. A second scale - the MPOC - was potentially useful if reduced to an eight item scale (from the original 20 items). The Family Support Scale was reliable but not valid whilst the Caregiver-Child and Personal Quality of Life Scales were neither reliable nor valid. The process of administering the scales combined with the qualitative data helped to explain why the scales did not perform as well as expected in a South African setting. Reasons for these findings included the caregivers’ inexperience in completing these kinds of questionnaires; their difficulty with the concept of grading their responses which meant that Likert-type scales were difficult for them to complete; and thirdly language and cross-cultural applicability. This was because the scales were developed for very different cultural groups. It was not the questions or scale items that were the problem; it was rather finding the language and words that caregivers themselves would use to express the underlying concepts. The study found that caregivers living in disadvantaged South African settings live very differently from their counterparts in well-resourced areas. They lived in poverty; were beset by financial concerns; often abandoned and rejected by their partners; and endured gossip and ignorant attitudes from their neighbours and the community. The burden of daily care-giving was high as most of the children were severely disabled. This was compounded by concern about the child’s health and the future. Despite this, the study found that they were happy, healthy and generally well satisfied with their lives. Support from informal support structures such as relatives and close family members, together with formal support structures, was an important dimension in helping caregivers cope. Qualitative data from the focus groups yielded information regarding caregivers’ beliefs surrounding the perceived cause of the child’s disability. These ranged from traditional and cultural beliefs to medical explanations, and to frank confusion between the two. This was accompanied by misconceptions about therapy and the outcome thereof. Parental perceptions and experiences of rehabilitation were positive although many caregivers initially expected therapy to provide a cure. Respectful and caring attitudes, “hands on” therapy, practical help and assistance with assistive devices and school placements were aspects of service most valued by caregivers. The study helped define the components of an “ideal” therapy service in disadvantaged South African settings. They would include the availability of parent support groups; greater involvement of fathers, close family members and traditional healers in the rehabilitation process as well as the implementation of innovative strategies to ensure clearer communication and understanding between therapists and caregivers operating in a cross-cultural setting. Elements of care not traditionally perceived as part of therapy such as promoting supportive networks and taking on advocacy role for children with disabilities may offer additional advantages. Conclusion The study confirms the view that scales developed in high-income settings are not necessarily immediately applicable to less well-resourced settings and often require extensive modifications to ensure reliability and validity. Whilst the Mental Health Scale is a reliable and valid tool for caregivers attending public service hospitals in South Africa, other scales, such as the MPOC, a popular scale in North American and Europe, require substantial modification for a South African setting. In addition to highlighting the challenges involved in finding suitable outcome measures of therapy intervention for this population, this study has objectively documented the lives and experiences of caregivers of children with CP in South Africa for the first time together with their experiences and perceptions of rehabilitation therapy. Using this information, the components of an “ideal” rehabilitation service in a disadvantaged South African setting have been identified and described. This may facilitate the establishment of a more effective and appropriate therapy service for caregivers and children with CP living in poor areas.

Thesis advisor: Judith A. Vessey / Purpose: The purpose of this study was to elucidate changes in parents' perceptions of health related quality of life (HRQOL), functional status, and caregiver burden in children with severe cerebral palsy (CP) following extensive orthopedic surgery and to determine the amount of nonmedical out-of-pocket expenses (NOOPEs) incurred during hospitalization. Background: CP is the most common cause of childhood physical disability. Children with severe non-ambulatory CP have multiple complex medical problems and frequently develop hip dislocations and neuromuscular scoliosis; these require extensive orthopaedic surgical interventions to prevent progression. The surgical trajectory is costly, resource intensive, and complications are common. Decision-making needs to extend beyond anticipated physical and radiographic improvements to include patient-centered outcomes including HRQOL, functional status, caregiver impact, and financial burden. Currently, research on this second group of outcomes does not exist. Methods: A single group prospective cohort study (N=48) design was used to measure changes pre- and post- surgery. NOOPEs were collected on a daily basis from parents during their child's hospitalization. A linear mixed-model regression analysis for longitudinal data, incorporating serial patient measurements over one year, was used to assess changes in HRQOL, functional status, and caregiver impact using measures normed for this population (i.e., CPCHILD, ACEND). NOOPEs were calculated using descriptive statistics. Results: Significant declines in HRQOL and functional status were noted at six weeks post-operative with return to baseline at three months. Long-term significant (p = .005) improvements, however, were noted beginning at six months. Caregiver impact did not change significantly over time. The total NOOPEs for the inpatient ranged from $59.00-$6977.50 (Median = $479.30) with 1971.5 missed hours from work. Conclusion: Children with severe CP who undergo extensive orthopaedic surgery and their families experience improvements across a variety of patient-centered outcomes in the long-term following surgery. Nursing has a critical role in assisting families in decision-making around surgery and providing anticipatory guidance and support. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Magister Scientiae (Physiotherapy) - MSc(Physio) / Introduction: Cerebral palsy is one of the leading causes of disability globally. The number of new cases of children with cerebral palsy (CP) is on the increase. Rehabilitation is the most common intervention used to help children with CP in Kenya. Early initiation of the rehabilitation process, and involvement of the family are important for optimal functional outcomes for children with cerebral palsy. This study aimed to establish the incidence of children under six years old with CP at the physiotherapy and occupational therapy department at Kenyatta National Hospital, Kenya in 2015. This was done in order to establish the need for rehabilitation services. Furthermore, the study aimed to explore and describe the direct patient process of care as part of the current rehabilitation process followed for children with CP from the age of 0to 6 years in order to identify any room for improvement. Study population and Methodology: Data were collected in two phases. Phase A consisted of collecting information pertaining to the number of new cases (incidence) of children with CP under six years of age in 2015 treated at the therapy (occupational and physiotherapy) departments at KNH. For this purpose, all records of children with CP under the age of six years at the rehabilitation department in 2015 were included and reviewed. For Phase B, a mixed methods approach and a parallel convergent design were used to explore the direct patient process of care component of the rehabilitation process.

Made available in DSpace on 2014-06-11T19:30:52Z (GMT). No. of bitstreams: 0 Previous issue date: 2009-02-17Bitstream added on 2014-06-13T18:41:02Z : No. of bitstreams: 1 brambilla_ejs_dr_botfm.pdf: 3307631 bytes, checksum: 0e260db0e5b26d369266605cc36f3b7c (MD5) / Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP) / Várias técnicas são utilizadas para o tratamento da paralisia facial, entre elas o enxerto de nervo transfacial e a transposição muscular. Estas técnicas foram associadas utilizando neurorrafia término-terminal (NTT) para tornar o músculo temporal duplamente inervado, porém, a secção de nervos saudáveis pode levar à atrofia ou enfraquecimento muscular. Os objetivos deste trabalho foram analisar a ocorrência da dupla inervação muscular através da neurorrafia término-lateral (NTL), avaliar a imediata inervação muscular através da NTL, evitando atrofia muscular e avaliar a ocorrência de degeneração Walleriana no segmento distal à NTL no nervo receptor. Foram utilizados 140 ratos Wistar divididos em sete grupos experimentais. O G1 foi o grupo controle de normalidade e o G2 o controle de desnervação. Em 80 ratos foi realizada a dupla inervação muscular (DIM) suturando o segmento proximal do nervo tibial (NT) na lateral intacta do nervo fibular comum (NFC). Estes ratos foram divididos em quatro grupos: G3 no qual os animais foram sacrificados após 120 dias; G4 onde 120 dias após a realização da DIM, o NFC foi seccionado proximal à NTL, estes animais foram sacrificados após 30 dias da secção; no G5 os animais foram sacrificados após 150 dias; no G6 120 dias após a realização da DIM, o NFC e o NT foram seccionados proximalmente à NTL e os animais foram sacrificados após 30 dias das secções; e no G7 o nervo fibular comum foi seccionado e, após 30 dias, o segmento proximal do NT foi suturado à lateral do coto distal do NFC e os animais foram sacrificados 120 dias após a NTL. Após realização dos testes da marcha e eletrofisiológico, os músculos tibiais craniais direitos (MTCD) foram removidos e pesados e os segmentos de nervo de interesse também foram coletados. Foram realizadas análises histomorfométricas das fibras do MTCD e fibras nervosas... / Among several techniques for facial palsy treatment, we have the transfacial nerve graft and the muscular transposition. Nowadays, these methods were associated using end–to–end neurorraphy (EEN). Even though the temporalis muscle became double innervated, the health nerve section possibly leads the muscular atrophy or even its weakness. The aim of this study was to analyze, through end-to-side neurorrhaphy (ESN), the double innervation of the muscle, the immediately muscular innervation and also evaluate the Wallerian degeneration occurrence in the distal segment of receptor nerve. One hundred forty Wistar rats were divided in seven experimental groups, 20 animals per group. The G1 was the sham group; G2 the control dennervation group. In 80 rats the double muscular innervations (DMI) was performed, the proximal segment of tibial nerve (TN) was sutured laterally to the intact peroneal nerve (PN). These 80 rats were divided in four groups: in G3 the animals were killed after 120 days; in G4, post 120 days, the peroneal nerve was cut proximal the ESN and after more 30 days the animals were killed; in the group G5 the rats were killed after 150 days; in G6 post 120 days, the peroneal and also the tibial nerves were cut proximal to the ESN and the animals were killed 30 days after the second surgery. Finally in the G7 the fibular nerve was sectioned and after 30 days, the proximal end of tibial nerve was sutured laterally to the peroneal distal stump. These rats (G7) were killed 120 days post ESN. The animals were submitted to walking track analysis and electrophysiological tests. After that, the right tibial cranial muscle (RTCM) was removed and the aim nerve segments were collected and weighted. The rats were killed with high doses of intraperitoneal sodium pentobarbital. Histomorphometrical analysis of TCM and nervous fiber was performed... (Complete abstract click electronic access below)

A question which has arisen clinically is the inability to generate adequate vertical force during the second half of the stance phase in cerebral palsy gait. Neither the mechanism nor the consequences of this inability are understood. It implies that the centre of mass (CoM) is inadequately supported with the potential for collapse of the limb in single support. Normal walking is achieved by the sophisticated control of the neuromuscular and skeletal systems with the purpose of advancing the body with minimum energy expenditure. These control systems are affected by damage to the brain in children with cerebral palsy and result in a multitude of problems which affect their gait making it difficult to determine cause and effect. This study aimed to improve the understanding of the ground reaction forces and motion of the CoM. Objectives The principle objectives were to analyse the supporting forces of the CoM during gait in normal adults, children, and children with diplegic cerebral palsy, by examining the inter-relationships of the vertical and horizontal components of the ground reaction force with the vertical component of motion and temporal parameters of the CoM. Design The study of adults and children’s data was both prospective and retrospective. The study of cerebral palsy data was retrospective. A new software programme was developed to extract specific gait parameters from both normal and cerebral palsy gait patterns. A novel approach to analyse the interaction of motion and force data in normal walking was subsequently developed. Background In normal gait, the vertical component of the ground reaction force forms a double hump where both humps are equal in magnitude and greater than body weight. It is widely accepted that the first hump (FZ1) is associated with deceleration of the downward motion of the CoM as the foot “impacts” the ground and the second hump (FZ2) is the action of “push off” as the body is propelled upwards and forwards. Walking requires force contributions from both legs but traditionally computed three-dimensional (3D) gait analysis packages presents the force data with both legs superimposed, rather than sequentially in time. This gives the impression that there is no period of overlap of the forces and thus ignores the critically important period where the CoM is transferred from one leg to the other during double support. By changing the presentation to view it sequentially in time, plus superimposing the CoM kinematics onto the same scale allowed their interactions to be observed and objectively measured. Methods The kinematic and kinetic data of 53 normal adults, 33 normal children, and 57 diplegic cerebral palsy children were acquired for the study. A new gait cycle, based on CoM motion, was defined to allow analysis of the forces in relation to CoM motion. Software was developed to extract specified parameters from the gait data. Impulse calculations over specific periods (based on the vertical motion of the CoM) allowed analysis of the vertical force contribution of each leg to the vertical support of the CoM. Results The results showed that inadequate generation of vertical force in children with diplegic cerebral palsy was widespread. In approximately 40% of such children there was a reduced ability to generate an adequate FZ2, which resulted in a reduced ability to control of the descent velocity of the CoM. The mean reduction in descent velocity in cerebral palsy was only 54% compared to 86% in adults. Integration of the vertical force and motion of the CoM showed that FZ2 was associated with controlling the descent velocity of the CoM. This reverses the traditionally accepted concept of “impact” and is contrary to the belief that FZ2 is associated with ‘push off’. Conclusions and Relevance This study emphasises the importance of the role of the supporting leg in the second half of stance. Failure to generate an adequate FZ2, which is currently ignored in clinical practice, should be given priority in patient management. This new knowledge has significant implications from a clinical perspective, not only in diplegic cerebral palsy, but in pathologies such as amputees, spina-bifida, and other neuro-muscular conditions.

Thesis(M.A. (Social Work)) -- University of Limpopo, 2018 / Disability is most prevalent in low income countries and communities. Cerebral palsy c is one of the disabilities that is affecting a sizeable number of children in low income countries. This study sought to explore the psycho-social challenges faced by caregivers of children with cerebral palsy in Dzivarasekwa Suburb in Zimbabwe. The study had the following objectives: to identify the psycho-social challenges facing caregivers of children with cerebral palsy, to appraise individual characteristics of caregivers which predispose them to stress, social exclusion and other psychosocial challenges, to establish which coping mechanisms are employed by caregivers of children living with cerebral palsy in response to the challenges they are facing and also to suggest possible solutions/ strategies social workers may employ to improve caregiving of children with cerebral palsy. The study used a qualitative approach in exploring the psychosocial challenges caregivers face. The qualitative approach was useful as participants were able to participate freely giving a more realistic picture of their challenges. The research used an exploratory-descriptive case study design in exploring challenges faced by caregivers of children with cerebral palsy in Dzivarasekwa Suburb. Data was then collected using in-depth interviews and Focus Group Discussions. Participants were caregivers of children with cerebral palsy, a hospital psychologist as well as social workers for a local NGO supporting the rehabilitation work at a local hospital. Data were analysed used the Thematic Context Analysis method. The research concludes that caregivers are subjected to stressing conditions, lack the financial means of caring for a child with CP; caregivers employ negative strategies to the problems they face which include using the children to beg, prostitution among others. The study recommends that, government should lead initiatives for supporting children with disabilities and their families, formation of support groups for parents of children with cerebral palsy, and continuous training of frontline workers in disability to avoid burn out.

This thesis characterises the cortical pattern of degeneration in progressive supranuclear palsy (PSP) and its consequences. Global atrophy was first examined using a recently developed staging scheme in pathologically-proven PSP cases compared with other tauopathies: gross atrophy was not observed in PSP. Quantification of regional volume loss throughout the brain was then used to determine the magnitude of more focal tissue atrophy in PSP, cortical dysfunction was investigated by measuring cerebral blood flow (CBF) changes, and several cortical cellular pathologies were analysed. Any changes observed were related to each other and clinical assessments of motor, cognitive and behavioural abnormalities. At mid-stage PSP, frontal and subcortical atrophy related to decreased CBF in the frontal cortex and cognitive decline. Parietocerebellar CBF increases were also identified (related to frontal CBF deficits) and related to motor and non-motor deficits. By end-stage PSP, focal atrophy had advanced from frontal and subcortical structures to include atrophy in the parietal lobe. Parietal lobe atrophy related to behavioural abnormalities. Histopathological analysis at end-stage revealed that the cortical atrophy and cell loss does not relate to tau deposition. The focal cortical cell loss related exclusively to motor deficits whilst the more widespread cortical tau deposition related to cognitive and behavioural impairments. Both the tau deposition and these non-motor impairments increased in severity over time. The results show that frontal atrophy and dysfunction occurs rapidly and early in PSP and relate to increasing cognitive deficits. Such deficits appear to cause compensatory CBF enhancement in parietocerebellar regions which then also undergo rapid and severe neurodegeneration. These later changes occur in concert with the more classic PSP symptoms, such as oculomotor features. Throughout the disease, the progressive increase in frontotemporal tau deposition contributes to cognitive and behavioural deficits which become most marked late in the disease. The findings strongly suggest that progressive clinical dysfunction in PSP is directly related to progressive cortical degeneration. Cortical degeneration appears to occur in two independent functional networks. Increased CBF in PSP may be a useful early indicator for future neurodegeneration, although the cellular mechanism leading to cell death requires further investigation.

Thesis (M.S.)--University of Delaware, 2006. / Principal faculty advisors: Robert E. Akins, Jr. and Deni S. Galileo, Dept. of Biological Sciences. Includes bibliographical references.

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