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.

Raising children is a highly demanding job for any family; the demands are even higher when the child has a disability. The cost of raising a child with a disability is said to be three times higher than that of raising a non-disabled child. Unfortunately, children with disabilities could be born into any family, including the poorest of the poor, who, due to their low socio-economic status, already have less than what is necessary to meet the needs of the non-disabled members. There is limited research into the coping strategies of families raising the children with disabilities in Lesotho, for this reason, the researcher decided to undertake this particular study to feed the curiosity on how families with low socio-economic status managed to raise the children with physical disabilities in this poverty stricken country. Following the Qualitative methodology, the researcher utilised both the purposive and the simple random sampling techniques to select participants from a list provided by the Department of Social Development. A total of ten (10) interviews were conducted with representatives of low socio-economic status families raising children with physical disabilities in the Makaota E12 community council of the Mafeteng district. The study revealed that the majority of families were coping well and that they were generally happy despite the presence of a child with a disability in their homes. The study further revealed a number of factors that played a role in determining the coping ability of each family; these include availability of the support structures and the severity of the child's disability. Finally, the study raised a need for post diagnosis counselling and educational campaigns intended to equip the families of children with physical disabilities with relevant skills and information they require to assist the children to develop to their full potential. The study further raised a need for broader research into the lives of children living with disabilities and their families, for better understanding of the area and for improved service delivery. / Mini Dissertation (MSW)--University of Pretoria, 2016. / Social Work and Criminology / MSW / Unrestricted