3. Electronic Theses and Dissertations (ETDs) - All submissions
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Item Knowledge, attitudes and practices of caregivers about oral lesions in HIV positive patients in NGOs / CBOs in Region, Johannesburg, Gauteng(2009-10-19T09:21:33Z) Malele-Kolisa, YolandaTitle: Knowledge, Attitudes and Practices of caregivers about oral lesions in HIV positive patients in NGOs /CBOs in Region 8, Johannesburg, Gauteng. Background: The HIV pandemic continues to be a major public health problem in South Africa where 11% of people were infected with HIV in 2005(HSRC, 2005).The care and support of these patients as they eventually become ill will necessitate the increase in use of community-based/homebased/ hospice institutions. The City of Johannesburg (CoJ), one of the metropolitan municipalities (local government) in Gauteng Province-SA, has been planning the development and implementation of programmes related to the prevention, care and support for people infected and affected by HIV/AIDS. Care and support has been limited to 18 NGOs/ CBOs. Four of these institutions provide palliative care and are staffed by 64 caregivers. Studies done throughout the world indicate that oral lesions associated with HIV occur in over half of HIV/AIDS patients. These oral lesions seriously impair the oral-health-related-quality of life in affected individuals and necessitate the need to provide services to alleviate them and improve patient comfort. The caregivers in the NGOs/CBOs are therefore pivotal in offering care and support in the management of HIV including the management of oral lesions. In order for the caregivers in the NGOs/CBOs to be able to manage the disease in its entirety; they need optimal knowledge of the infection/illness including the oral manifestations associated with the ailment. Objectives: (1.) To determine the knowledge of the caregivers in the NGOs/CBOs providing palliative care in Region 8, CoJ, Gauteng regarding common oral manifestations associated with HIV. of the caregivers in the NGOs/CBOs . (2.) To assess the attitudes of the caregivers in the NGOs/CBOs providing palliative care in Region 8, CoJ, Gauteng on common oral manifestations associated with HIV. (3.) To determine the practices of the caregivers in the NGOs/CBOs in Region 8, CoJ, Gauteng, pertaining to the common oral manifestations associated with HIV. (4.) To determine the sociodemographic profile of the caregivers providing palliative care in the NGOs/CBOs in Region 8, CoJ, Gauteng. Methods: A descriptive cross-sectional study was conducted where all caregivers providing care and support in the four NGOs/CBOs were invited to participate in the study. Data was collected by a customised questionnaire to obtain information on demographics, knowledge, attitudes and practices on providing for HIV positive patients. Results: The results were grouped according to training in oral health care (TOHC) and no training (NTOHC). The mean age was 43.5 years for TOHC and 30.8 years NTOHC and was statistically significant (p<0.005). There were statistical significant differences in the gender proportions in within groups in the both groups, employment status, work experience as a caregiver and training in general home-based care (p<0.05). Most (72.2%) of those NTOHC had little experience (<1 year) of care giving compared to 41.1% (p=0.03) and 33.3% were providing care without training in homebased care (HBC) compared to 100% (p=0.00). The caregivers trained in oral health care had knowledge levels shown by higher knowledge levels on four of seven variables compared to those who were not trained in oral health care (p< 0.05, Table 3.3 p.21). The majority of caregivers NTOHC reported that caring for the mouth of HIV positive patients is an ‘unpleasant difficult task and poses an infection risk to the caregivers’ while these concerns were expressed by the minority of caregivers TOHC (p<0.05). Practices performed by caregivers NTOHC were appropriate for dry mouth, difficulty in swallowing but was inappropriate for bleeding gums and bad breath while those caregivers TOHC provided appropriate advice/practices for oral thrush, bad breath, bleeding gums, dry mouth with statistical difference. Conclusion: The caregivers TOHC had fairly better knowledge, attitudes and practices regarding oral lesions in HIV compared to those NTOHC. There was strong likelihood of knowledge variables and training in oral health care. Recommendations: Bearing in mind the limitations of KAP surveys and the cross sectional nature of the study, it is recommended that training in oral health care and refresher courses for those trained must be incorporated into the programme of all caregivers working in palliative institutions because it will provide specialised knowledge about oral health and oral lesions in HIV improve their knowledge, attitudes and practices and thus provide a better service to their patients.Item Parental perceptions and experience of rehabilitation services for children with cerebral palsy in poorly-resourced areas(2008-09-18T13:11:30Z) Saloojee, Gillian MargaretBackground 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.Item A longitudinal study of neurodevelopmental delay in HIV infected children(2008-07-15T11:56:22Z) Potterton, Joanne LouiseABSTRACT Paediatric HIV remains one of the most significant challenges to face children, their families and their health care providers in South Africa. The prevalence rate of paediatric HIV infection in South Africa is set to remain high until such time as universal access to antiretrovirals for prevention of mother to child transmission is achieved, and the mother to child transmission rates of HIV start to come down. HIV is neurotrophic and is known to invade the developing central nervous system and cause widespread damage. The result of this is a well described encephalopathy which has the potential to affect all facets of development. Children in South Africa who are infected with HIV are vulnerable to a number of factors which may cause developmental delay. Poverty and malnutrition are likely to exacerbate the developmental delay caused by HIV encephalopathy. Physiotherapists in South Africa have not become involved in the long term management of children infected with HIV and paediatric HIV clinics do not routinely offer any rehabilitation services. The prevalence and extent of developmental delay in HIV infected children in South Africa has not been established. Despite the fact that a number of studies have highlighted the prevalence of developmental delay in Western countries, no intervention studies addressing this problem could be found. Caregivers of HIV infected children face numerous stressors. Poverty, stigma and their own health care needs make parenting an HIV positive child even more challenging. The needs of caregivers of HIV infected children have not been well researched in the context of developing countries. The aim of this study was therefore to establish whether a basic home stimulation programme would have any impact on the neurodevelopmental status of young children infected with HIV, and on the parenting stress levels of their caregivers. Further objectives of the study were to establish the prevalence and progression of developmental delay in HIV infected children; to monitor the effect of antiretrovirals on neurodevelopment; to determine who the caregivers of HIV infected children were and to determine what factors were predictive of neurodevelopmental status and parenting stress levels. In order to meet these objectives a longitudinal randomized controlled trial was conducted. One hundred and twenty two HIV positive children, under two and a half years of age, were recruited for this study at Harriet Shezi Children’s Clinic at Chris Hani Baragwanath Hospital in Soweto. Children were randomly assigned to a control or an experimental group. The developmental status of all children was monitored over a year using the Bayley Scales of Infant Development II. Parenting stress was monitored with the Parenting Stress Index/Short Form. Children in the experimental group received a basic home stimulation programme, which was updated every three months when they came to visit the clinic, as well as all the usual clinic services. Children in the control group received all the usual services at the clinic but no stimulation programme. Most of the children in the sample were cared for by their biological mothers. They came from poor homes with limited access to common household amenities. Most of the caregivers had not completed 12 years of schooling. The children in the control and experimental groups were well matched for all their baseline measurements and demographic characteristics. At baseline the children were wasted and stunted and had very low CD4 counts. Only 16% of the children were on antiretrovirals at baseline assessment. The children were severely delayed with respect to both motor and cognitive development. The parenting stress levels of the caregivers were very high at baseline. Over the period of one year the children in the experimental group showed a significantly greater improvement in cognitive (p=0.01) and motor (p=0.02) development when compared to children in the control group. Although the children improved, they still had a degree of developmental delay at the end of the study period. The parenting stress levels decreased significantly for caregivers in both the control and the experimental groups (p<0,001), but there was no significant difference between the two groups (p=0.057). The groups were well matched at all time points for anthropometric measures and CD4 counts with no significant differences being found. There was also no difference in the number of children on antiretroviral therapy between the groups at any time. Children who were antiretroviral naïve at the start of the study and then started highly active antiretroviral therapy showed a significant improvement in motor development (p<0.001), but no improvement in cognitive development (p=0.77). A combination of a number of factors was predictive of developmental status. This included growth parameters, CD4 counts and the age of the child. Being in the experimental group and being older at baseline assessment were important predictors of improvement in MDI and PDI over time. Parenting stress was predicted by a number of factors, including educational level of the caregiver, type of housing and the number of children in the household. A decrease in parenting stress was most likely in caregivers who were better educated and who lived in households with fewer adults. These results signify that a basic home programme can significantly improve both the cognitive and motor development of young children infected with HIV. This programme was simple and easily implemented and should become standard practice at paediatric HIV clinics in South Africa. The current protocol for administering antiretrovirals in South Africa allowed for motor, but not cognitive improvement in young children commencing treatment. Parenting stress was not affected by the addition of a basic home stimulation programme.The psychosocial and developmental needs of South African children infected with HIV are complex and multifaceted. Further research is needed to establish the best possible interventions for these children and their families.Item An investigation of the programs and equipment used by caregivers and day mothers for the age group 0-36 months in Limpopo Province, South Africa(2008-05-14T09:45:02Z) Grey, Margaretha J.ABSTRACT This study investigated the quality of care provided to children between 0 and 36 months in Limpopo Province. A non-experimental, quantitative, cross sectional descriptive design was used. The researcher developed two research instruments: • a questionnaire which collected information on registration, training, services provided stimulation programs, referral and equipment. • an observation sheet which recorded information on the premises, the staff, equipment and office, toys, outdoor play area, sleeping and dining areas. 111 subjects participated in the study- 19 day mothers in urban areas and 92 caregivers in more rural areas. Descriptive statistics were used to summarize the data in the questionnaire and the mean values for the two samples from the observation were compared using a t test. Results suggest that the quality of care provided by both day mothers and caregivers is below the accepted overall mean of 3 for all variables examined except day mother’s premises. Caregivers at care centres were better trained and offered more stimulation programmes than day mothers. They also scored better than day mothers with respect to staff and equipment with toys and dining areas being significantly better. Day mothers scored marginally higher than caregivers with respect to outdoor play and sleeping areas.