Magister Scientiae (Physiotherapy) - MSc(Physio) / Neural tube defects (NTDs) are the world‘s second most common birth defects after cardiovascular defects. In developing countries, poor access to health care services among children with NTDs contributes to early infant deaths, while those who survive live with severe disabilities. In Zambia, all children with NTDs in need of surgery are referred to Lusaka and physiotherapy services are not available in health facilities below the first level hospitals. The aim of the current study was to determine the profile of children with NTDs and to explore the experiences of mothers with accessing health care services for these children. The study which was conducted at the University Teaching Hospital (UTH) in Lusaka consisted of both quantitative and qualitative methods. The quantitative phase consisted of a retrospective record review of children with NTDs, who were admitted to UTH from January to December, 2010. A sample of 50 medical records was used based on available records, and data collection was done using a data extraction sheet which was specifically designed for the study. Analysis of quantitative data was done using Statistical Package for Social Science (SPSS) version 20.0. The qualitative phase had two parts, with the first part involving in-depth interviews with a purposefully selected sample of 20 mothers of children who were admitted to UTH. The second part used a sample of convenience of four mothers who had brought their children for follow up visits. All interviews were audiotaped, transcribed verbatim and translated, and recurring ideas were coded and collapsed into categories and themes. Permission to conduct the study was obtained from the UWC Research Grant and Study Leave Committee, University of Zambia Research Ethics Committee, and University Teaching Hospital management. Informed written consent was obtained from the mothers who accepted to take part in the study. Results from the record review revealed that the majority of children were from Lusaka province, with ages ranging from one day to 48 months and a male predominance of 58%. Myelomeningocele was the most common type of NTD (44%) with the lumbar region being the common site (52%). Hydrocephalus was present in 74% of children, 30% of children had both paraplegia and incontinence and 22% (n=11) of the files had no information on the neurological impairments. Wound infection was present in 40% (n=20) of the children. The majority (66%) of children were lost to follow up. Mothers of children who were admitted in UTH cited transport to UTH and back home as the main challenge. Other challenges included the lack of a prenatal diagnosis, the need for information, uncertainty about future of their children, and concerns about their family. Interviews with mothers on experiences with accessing physiotherapy services found that the lack of knowledge among mothers was the main reason children were not accessing physiotherapy services. Findings on access to health care were related to the ―Four A‘s‖ access theory which consists of four dimensions of access namely geographical accessibility, availability, affordability and acceptability. It is recommended that health care providers and policy makers ensure that all children with NTDs are provided with free transport to and from referral hospitals. Policy makers need to consider involving physiotherapists in out-reach programmes and mobile clinics to ensure access to physiotherapy services for all children in need of the service. Health care providers must also ensure that they give adequate information to mothers of children born with birth defects as this enhances their access to appropriate health care services.

abstract: This thesis reviews the initial cases of fetal surgery to correct myelomeningocele, a severe form of spina bifida, and discusses the human and social dimensions of the procedure. Myelomeningocele is a fetal anomaly that forms from improper closure of the spinal cord and the tissues that surround it. Physicians perform fetal surgery on a developing fetus, while it is in the womb, to mitigate its impacts. Fetal surgery to correct this condition was first performed experimentally in the mid-1990and as of 2020, it is commonly performed. The initial cases illuminated important human and social dimensions of the technique, including physical risks, psychological dimensions, physician bias, and religious convictions, which affect decision-making concerning this fetal surgery. Enduring questions remain in 2020. The driving question for this thesis is: given those human and social dimensions that surround fetal surgery to correct myelomeningocele, whether and when is the surgery justified? This thesis shows that more research is needed to answer or clarify this question. / Dissertation/Thesis / Masters Thesis Biology 2020

PURPOSE: The purpose of this study is to report preliminary evidence to support a new condition-specific measure of transition readiness that is theoretically grounded in the Stages of Changes framework. The Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB) supplement is a newly developed tool used to measure independence and skill acquisition related to spina bifida. Similar to the Transition Readiness Assessment Questionnaire (TRAQ), the TRAQ-SB uses a 5-point Likert response set. METHODS: Working with a multi-disciplinary team with expertise in the care of children with spina bifida, the authors developed twelve items pertaining to main aspects of SB self-management. The items were reviewed and revised through several iterations by the team and patients. The items were then fielded at a spina bifida Specialty Clinic, where 93 consecutive patients 12–25 years of age were approached to participate and 90 were administered the 20-item TRAQ and a 12-item TRAQ-SB questionnaire. A principal component analysis (PCA) was conducted on the twelve items with oblique rotation (promax). Criterion validity was also assessed by examining the correlation of the TRAQ-SB supplement with the TRAQ and with age. RESULTS: Results of the factor analysis revealed that eleven of the twelve items loaded onto one factor with factor loadings ranging from 0.46 to 0.84. The scale yielded excellent internal reliability with a Cronbach alpha of 0.90. Correlations of the TRAQ-SB supplement scale score with the TRAQ overall scale score demonstrated good criterion validity (r= 0.74, p< 0.01). In addition, it was highly correlated with the TRAQ subscales, varying from 0.68 to 0.74 (all p< 0.01). Lastly, the TRAQ-SB was significantly correlated with age (r= 0.25, p< 0.01). CONCLUSIONS: Results of our analyses indicated that the TRAQ-SB demonstrated good internal reliability and criterion validity as evidenced by strong correlation with age and the validated TRAQ measure. The TRAQ-SB tool can be useful to incorporate transition readiness assessment and self-management training into routine care for adolescents with spina bifida.

PURPOSE: In order to transition to adulthood and independence, youth with spina bifida must assume significant self-management responsibilities including monitoring for shunt malfunction, maintaining intact skin in areas that are insensate, and maintaining proper bowel and bladder function. Validated measures of specific spina bifida self-management skills are lacking and this hampers the ability of clinical personnel to support successful transition for youth with spina bifida. METHODS: We developed a self-report measure specific to SB self-management skills consistent with the framework of the Transition Readiness Assessment Questionnaire (TRAQ). To test the predictive validity of the tool we surveyed 90 youth and young adults ages 12-25 with spina bifida attending a multidisciplinary clinic participating in the National Spina Bifida Patient Registry (NSBPR). RESULTS: Adjusted for age, gender, race, insurance status and lesion level, higher scores on the TRAQ-SB (increased self-management) were negatively associated with urinary incontinence in the past month. Only lesion level, and not TRAQ-SB scores, was a significant predictor of stool incontinence and skin breakdown. CONCLUSIONS: Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida.

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Although these discourses construct disability differently, three of them – the lay, charity and medical discourses – view disability very negatively. The lay discourse sees disability as something to be fearful of and therefore chooses to ignore it. According to the charity discourse people who are disabled should be pitied and helped because they are dependent and helpless. The medical discourse defines disability as abnormal – a “sickness” that requires treatment by medical experts. This study endeavors to challenge the stereotypical “picture” of a person with a disability. By conducting a narrative research design the life-world of a unique boy (who has a physical disability, called spina bifida) is captured in the telling of his life-story. A narrative research design was specifically chosen to portray the context and life-experiences (good and bad) of this little boy – a child in totality. The narrative life-story was written in the first person in order to invite the reader as a co-participant into the world of a boy with spina bifida. An asset-based approach accompanied the narrative research design in order to explore whether positive aspects of this boy’s life-world could be identified. Where disability is concerned, the asset-based approach proposes a shift from the traditional “deficit approach” towards a “strength-based approach”. This study not only tells the captivating life-story of a boy with a physical disability, but also identifies and embraces the positive side of living with a disability. / Dissertation (MEd (Educational Psychology))--University of Pretoria, 2006. / Educational Psychology / unrestricted

Thesis (M.Tech.: Chiropractic)-Dept. of Chiropractic, Durban University of Technology, 2007 xi, 38 leaves, Annexures 1-2 / Background: Various congenital spinal anomalies are common findings in the general population. Their clinical significance is controversial with no definitive association been made between any specific congenital spinal anomaly to any clinical features. Project Design: This research study was designed in the form of a quantitative, non-experimental, empirical clinical survey. Method: Data was obtained from thoracic and lumbar spine radiographs contained in the Chiropractic Day Clinic at the Durban University of Technology from 1 January 1997 to 31 December 2005 and from the corresponding patient files. Through the research procedure, 519 thoracic and lumbar spine radiographs were located in the confines of the Chiropractic Day Clinic. Due to the exclusion criteria of a past or present history of trauma to the thoracic or lumbar spine areas, 147 radiographs were excluded. Objectives 1.To determine the period prevalence (1 January 1997 – 31 December 2005) of congenital thoracic and lumbar spine anomalies. 2.To determine if there is any association between the presenting clinical features and the congenital thoracic and lumbar spine anomalies in general. 3.To determine if there is any association between the presenting clinical features and individual congenital thoracic and lumbar spine anomalies. 4.To compare subjects presenting clinical features with reported clinical features from literature.