The stiff-knee gait pattern of children diagnosed with cerebral palsy (CP) is assumed to be caused by spasticity of the quadriceps which interferes with knee flexion normally occurring during the swing phase of walking. In current clinical practice, the ability to assess quadriceps spasticity is limited by the lack of an objective and reliable test that discriminates the role spasticity plays in functional limitations. The primary purpose of this series of studies was to assess the pendulum test as an objective measure of quadriceps spasticity. The first study assessed the reliability of the pendulum test. Moderate to very high between day reliability for all thirteen measures of the pendulum test were found. The second study assessed the discriminant ability of the pendulum test to correctly identify a stiff-knee gait pattern. Because most clinicians do not have access to a three dimensional motion analysis system, the third study assessed the reliability and accuracy of visual observation of the pendulum test. Sixty-eight children with a primary diagnosis of cerebral palsy participated. A three-dimensional motion analysis system was used to measure the subjects knee motion while walking, and performing the pendulum test. Spasticity of the quadriceps was also assessed using traditional clinical measures i.e., the modified Ashworth scale (MAS), and the Ely tests. Forty-seven percent of the variance in the stiff-knee gait pattern was explained by a regression model using the pendulum test and traditional clinical measures. The only significant measure in the regression model was the magnitude of knee motion occurring during the first swing of the pendulum test (A1). Discriminant analysis revealed the A1 measure correctly classified 77% of the subjects knee-gait pattern. Four observers demonstrated moderate accuracy and repeatability in estimating A1 value. The visual assessment of A1 correctly classified 72-76% of the subjects knee-gait pattern with no prior knowledge of the subjects gait. This series of studies demonstrated the pendulum test is an objective, repeatable measure of quadriceps spasticity. A negative pendulum test (indicated by an A1 value greater than 45 degrees) is more useful for ruling out a stiff-knee gait pattern compared to the traditional clinical measures.

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Thesis (M.Sc.(Occupational Therapy))--University of the Witwatersrand, Faculty of Health Sciences, 2013. / Hand function deficits are associated with Cerebral Palsy (CP), and lead to diminished participation in activities of daily living (ADL’s), play and school. A longitudinal experiment incorporating a pre-test-post-test design was used with a convenience sample of 28 children with spastic quadriplegic CP randomly assigned to two groups. Both groups received monthly occupational therapy and a home programme over the three month period, the intervention group received an additional neoprene thumb abductor splint. The Quality of Upper Extremity Skills Test (QUEST) was administered at baseline and again at 3 months to assess changes in underlying impairments contributing to hand function. There were no statistically significant differences between final scores in the control and intervention groups, but a clinically significant improvement in score with the splint on for the intervention group was found. Wearing the splint during functional tasks may be beneficial in improving underlying impairments.

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.