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Browsing Medicine by Author "Aldous, Colleen Michelle."

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    An assessment of tne successes and shortfalls of the national birth defects databases and an improved data collection method of the databases.
    (2018) Mtyongwe, Vuyiswa; Malherbe, Helen.; Aldous, Colleen Michelle.
    The Constitution of South Africa (SA) together with the National Health Act (63 of 1977) govern the provision of health services to the residents of the country. With a three-tier system of governance consisting of national, provincial and local (district) government, each tier functions autonomously, though in unison. The National Health Act outlines the health system whilst specifying services per level of governance. In this document, medical genetic services, amongst others, are included as a health issue that needs to be addressed as part of the functions of the National Department of Health (NDOH). At this level, these services form part of the Maternal and Child Health services. Although neglected, medical genetics services are important for the prevention and management of congenital disorders (CDs) in the community. These services are implemented through the development and implementation of policy guidelines. Data on CDs form the basis for policy development, decision making and planning for services. Without empirical data, services for this vulnerable group of individuals, cannot be adequately provided. Collection of CD data was initiated in 1980, with multiple surveillance systems available in the country by the early 1990s. One system in particular (Birth Defects Surveillance System-BDSS) was successful, with its data (from 1992-2004) being submitted to the International Clearinghouse for Birth Defects Monitoring Systems (ICBDMS), whose functions include the exchange of CD birth prevalence among member countries and the promotion of epidemiologic studies. In 2006, the NDOH developed the standardized birth defect notification tool (BDNT), with the intention of substituting all existing CD surveillance systems with one notification tool and system for the entire country. The primary objective of this study was to measure the effectiveness of this system, taking into account the challenges experienced in the reporting period. This was done by analyzing the data and comparing it to other surveillance systems globally and locally. The secondary objective was to develop an improved surveillance system for the country. Data from the BDNT was analyzed for a nine year period, 2006 until 2015. Analyzed data included the number of CDs reported per year, per province and per district. CDs of all pregnancy outcomes were included e.g. live births, stillbirths, terminated pregnancies and miscarriages. Birth prevalence was calculated based on aetiology, (whether the CD was genetically or environmentally determined), and per priority condition (This list of priority conditions was defined by the NDOH in their 2001 Birth defects policy guidelines. The number of priority CDs reported by doctors versus nurses was also determined). Priority conditions are, Down syndrome, fetal alcohol syndrome, neural tube defects, oculocutaneous albinism orofacial clefts and talipes equinovarus. A total of 17 761 notifications were received from across SA, of which 16 395 (92.13%) were CD notifications and 1 366 (7.69%) were zero notifications (these are notification tools that were completed by the health facility in months when no CDs were identified by the health viii facility). Compliance was erratic with KwaZulu-Natal province reporting the most CDs, n=9 732 (59.36%), and Western Cape province reporting the least, n=389 (2.37 %). KwaZulu-Natal province’s success is largely attributed to the good medical genetics services that were administered by Professor William Winship while he was alive. Overall, the districts where medical genetics facilities are located reported more CDs. When compared to modelled estimates, the BDNT surveillance system showed an underreporting rate of 98%. Malformations accounted for most of the reported CDs with a birth prevalence of 1.02 per 1 000 live births. Birth prevalence for CDs categorized by aetiology were: single gene disorders 0.07 per 1 000 live births; chromosomal disorders 0.13 per 1 000 live births; multifactorial disorders 0.09 per 1 000 live births; CDs caused by Rh (rhesus factor) incompatibility 0.00 (0.0032) per 1 000 live births and 0.01 per 1 000 live births for CDs caused by teratogens. Birth prevalence for each priority CD was as follows: Down syndrome 0.12 per 1 000 live births, fetal alcohol syndrome 0.01 per 1 000 live births, neural tube defects 0.09 per 1 000 live births, oculocutaneous albinism 0.03 per 1 000 live births, orofacial clefts 0.10 per 1 000 live births and talipes equinovarus 0.10 per 1 000 live births. Over half (57.80%) of all reported CD cases were diagnosed by nursing staff. Following analysis of data from the BDNT, a new surveillance system was developed containing the following factors: the types of CDs to be monitored, approaches to data collection, classification of collected data and the use of data received. Initially, the new CD surveillance system was going to be integrated into the national notifiable medical conditions surveillance system. In addition, an electronic system (with a backup paper-based notification system) was developed together with colleagues responsible for notifiable medical conditions surveillance and the National Institute for Communicable Diseases (NICD) which is yet to be piloted. Upon further research, certain elements were lacking in the system which could negatively impact upon implementation. As a way forward, certain considerations were identified for future implementation of a CD surveillance system. These were categorized into mandatory and elective factors. The former includes political commitment to CDs as a health issue, legislation prescribing CD services including surveillance, vital registration of CDs at birth and death, and NDOH facilitating the coordination of CD surveillance systems in the country. The latter includes the use of a district based approach to data collection with specific personnel identified to collect data using an electronic system. This study lays the foundation for national CD surveillance in SA. Various surveillance systems or patient registries are available, but none operate data at a national level. This study further identified the need for coordination between the different surveillance systems and/or patient registry data sets (e.g. non-governmental organisations and laboratories) which are not included in the BDNT. The national CD surveillance system could serve as a link between the various stakeholders (provinces, academic institutions, laboratories and non-governmental institutions), allowing each entity to have a system that is suitable to their needs while collating data from these systems. The CD surveillance system should also follow patients from the point of diagnosis to treatment/management and/or death, allowing for the true burden of CDs to be measured.
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    Culturally competent patient-provider communication with Zulu patients diagnosed with osteosarcoma.
    (2016) Brown, Ottilia.; Aldous, Colleen Michelle.
    Background: Communicating the diagnosis and prognosis of cancer is widely documented as a challenging task. Furthermore, ensuring that patients understand their treatment options is considered good practice; however literature in this regard tends to be limited. Performing these tasks in cross-cultural clinical settings complicates patient-provider communication. This study focused on Zulu patients diagnosed with osteosarcoma and was conducted at a tertiary (training) hospital in the province of KwaZulu-Natal (KZN), South Africa. The primary motivation for undertaking this research stemmed from observations in clinical practice that Zulu cultural beliefs and practices play a significant role in the management of osteosarcoma and hence culturally competent communication was an essential requirement at this site. In addition, patients typically present at the study site with locally advanced or metastatic disease. The late presentation of patients and further delays stemming from patients’ preferences to fulfil cultural practices results in treatment limitations and very poor prognosis. Healthcare providers in this setting are therefore expected to simultaneously inform patients of the diagnosis of osteosarcoma, the significant limitations with regard to treatment options, and prognostic considerations in a culturally sensitive manner that engenders cooperation in the patient while allowing them the opportunity to fulfil their cultural obligations. Aim and Objectives: This study aimed to develop an evidence-based practice guideline with recommendations for engaging in culturally competent communication with adult Zulu patients regarding the diagnosis, treatment and prognosis of osteosarcoma. Four objectives were devised in order to meet the aim of the study. Objective 1: Conduct an integrative literature review to gather evidence from previous research. Objective 2: Gather evidence from healthcare providers about the approach taken when they discuss osteosarcoma, its treatment and prognosis with Zulu patients as well as the cultural aspects considered during these discussions. Objective 3: Gather evidence from Zulu patients by exploring their understanding of the osteosarcoma diagnosis, its treatment and prognosis, and their experience of patient-provider communication throughout the illness experience was conducted. Patients’ cultural descriptions related to the management of osteosarcoma were also elicited. Objective 4: Develop an evidence-based practice guideline for culturally competent patient-provider communication with osteosarcoma patients based on the evidence collected in Objectives 1, 2 and 3. Methods: Objective 1: Whittemore and Knafl’s approach to conducting an integrative literature review was used. A number of databases were systematically searched and a manual search was also conducted. Specific inclusion and exclusion criteria were set and documents were critically appraised independently by two reviewers. Thirty-five documents were included following these processes. Data extraction and synthesis followed and were also independently verified. Objective 2: We used an exploratory descriptive contextual study design and conducted focus group interviews with professional nurses, allied health professionals, and orthopaedic physicians. Three focus groups with a total of twenty-three participants were conducted. Focus group interviews were audiotaped and transcribed verbatim. We thematically analysed the interview transcripts using Guba’s Model of Trustworthiness to ensure rigour. Objective 3: We used a qualitative case study approach with in-depth interviews that were conducted in isiZulu, audiotaped and transcribed verbatim. The transcripts were translated into English and back translated. Transcripts were then analysed thematically. Data were verified using Guba’s model of trustworthiness. Objective 4: The AGREE II (Appraisal of Guidelines, Research and Evaluation) appraisal instrument was used as a guide for developing the evidence-based practice guideline. The AGREE II is a 23 item tool comprising six domains, five of which were considered in developing the guideline. Results: The integrative literature review provided directives on how to deliver culturally competent communication to cancer patients. The review also highlighted the grave need for scientifically rigorous research in the field of culturally competent communication in the management of cancer. Our research with the healthcare providers produced a number of strategies for communicating with Zulu patients about the diagnosis, treatment and prognosis of osteosarcoma. These strategies also addressed cultural considerations and provided detailed information on the cultural factors that have to be taken into account when managing Zulu patients diagnosed with osteosarcoma. Challenges encountered with regard to discussing diagnosis, treatment and prognosis also emerged. In addition to revealing strategies and challenges that are confirmed in the literature, this study also unearthed unique strategies and challenges peculiar to this cross-cultural clinical setting. Despite the uniqueness of some of these strategies, they could be useful in other cross-cultural clinical settings where patients belong to collectivistic cultures, and observe traditions and other practices that are significantly different to Western medical approaches. Our findings also emphasised the importance of training healthcare providers on communication of sensitive information in cross-cultural clinical settings. Our research with Zulu patients diagnosed with osteosarcoma revealed that these patients had extensive understanding of the diagnosis of osteosarcoma, diagnostic procedures, the treatment options applicable to treating osteosarcoma and the side-effects of chemotherapy. These findings also revealed patients’ varied perceptions of and emotional responses to diagnosis and treatment and exposed difference in healthcare provider and patient perceptions of amputation. A significant contribution of the patient study is embedded in Zulu patients’ descriptions of their cultural and health beliefs and practices. Specific rituals that are performed to ensure successful outcome of medical procedures, to cleanse patients from bad luck and to address the issue of witchcraft were outlined. Consultation with a reputable traditional healer was flagged as an important cultural practice. However, patients varied in their adherence to traditional belief systems, participation in rituals and the extent to which they deferred decision-making to the familyreinforcing the importance of not stereotyping based on pre-existing knowledge of a cultural group. The evidence-based practice guideline was developed based on the findings from the integrative literature review and the studies conducted with the healthcare providers and the Zulu patients. These three sources of evidence facilitated the development of a guideline that presents generic requirements and recommendations for culturally competent communication, and denotes specific strategies for communicating diagnosis, treatment, and prognosis to Zulu patients diagnosed with osteosarcoma. The evidence-based practice guideline also explicates areas that require further research and refinement. Conclusions: The obvious contribution of this research is represented in the evidence-based practice guideline. However, each of the objectives makes a significant contribution to knowledge and practice. This study breaks ground and alerts to the magnitude of research that is required in cross-cultural clinical settings, especially in the South African context as literature in this context with regard to culturally competent communication is very limited. The need for training our healthcare providers in communication of sensitive information in cross-cultural clinical settings strongly emerged from the data. Policy directives that support culturally competent patient-provider communication at a healthcare systems level could significantly contribute to addressing resource constraints and creating clinical environments that are conducive to culturally competent communication.
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    An investigation into the renewed need for the care and prevention of congenital disorders in South Africa.
    (2017) Malherbe, Helen.; Aldous, Colleen Michelle.
    Abstract available in PDF file.