Browsing by Author "Campbell, Laura."

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Certain the curriculum ; uncertain the practice : palliative care in context.
(2012) Campbell, Laura.; Amin, Nyna.
This study opens in a critical paradigm and explores the previously unheard experiences of caregivers who have been trained in and who practice palliative care in a context of rural African, isolated, profoundly impoverished homes. Instead of a healthcare focus, the study used curriculum theory to provide a fresh look at and to better understand palliative care in context. Curriculum theory distinguishes a curriculum as preactive (espoused) or interactive (enacted), and preactive and interactive curricula for palliative care were compared and interrogated as exemplarity of a circumstance when a curriculum is transported into a context other than that where it originated. The study offers several contributions to health sciences, including a link between curriculum theory and palliative care, and provides deep insights into the experiences of those who practice palliative care with limited guidance and support from senior healthcare professionals. In the 1970s palliative care developed in a hospital context in the United Kingdom as a response to ideas which included that society is death-denying and that medicine and associated sophisticated technology act to render patients passive spectators in care decisions. An aim is to coordinate and plan care which includes a focus on empowering patients and their families by giving them choices around living with a life-shortening illness and dying as comfortably and peacefully as possible. A common theme is an intention to relieve or prevent suffering, and palliative care services have developed throughout the world. Palliative care is delivered by healthcare professionals acting within a multidisciplinary team who provide care at various sites including hospitals, homes and hospices. Palliative care has been introduced to post-apartheid South Africa relatively recently, and the preactive palliative care curriculum is largely based on notions of palliative care which developed in a European context while the interactive curriculum is enacted in rural African homes. Ideas around palliative care may not have a universal or rigid quality, but may represent an agreement among people in a certain context and the unexplored introduction of such ideas into another context may potentially give rise to a hegemonic flow of ideas. Systemic challenges around healthcare in Africa may preclude a patient from having choices in their healthcare. The agency of patients may be undermined by their material living conditions. The study site was rural KwaZulu-Natal in South Africa, where the incidence and prevalence of Human Immunodeficiency Virus are the highest in the world. Study questions revolved around a curriculum as a source of knowledge for practice and experiences of a context and practice. Data sources were twofold: firstly a palliative care curriculum text was scrutinized and analyzed in terms of who is cared for, place of care, work of caregivers and palliative care; and secondly data from participants (nurses and home-based care workers) were analyzed to produce deep insights into their experiences of practising in context. Data were generated using a visual technique of “photo-elicitation”, where participants were invited to discuss photographs they took to convey their experiences, and analyzed inductively using naturally emerging themes. Curriculum data indicated that patients should be offered palliative care when there is awareness that they face a life-limiting illness, and a focus was on home care. The espoused curriculum foregrounded physical care and placed less emphasis on aspects such as spiritual, cultural or psychosocial care; the curriculum was delivered at a site distant to caregivers’ practice. In South Africa the legacy of apartheid lingers, and data from caregivers revealed that physical conditions are harsh in that patients are starving, housed in makeshift shelters and face profound social challenges. Spiritual care and cultural care were highly valued, as patients map onto traditional beliefs and cultural practices Data revealed that caregivers were sometimes unsure, angry, felt powerless and could be placed in physical and emotional danger. Patients and their families valued some aspects of palliative care, such as preparing for death and bereavement support, but found challenges in understanding other aspects such as why caregivers did not appear to make attempts to cure disease. Juxtaposing study findings with published literature revealed that diametric worldviews of teachers and learners have an impact on curriculum delivery. The home could be a beneficial place for care but could also create challenges. The study theorizes beyond a palliative care curriculum, and in concluding the study I found that I must move from a critical to a post-structural paradigm. A critical paradigm seeks data around oppression and marginalization so that transformation may be enacted, and data indicated that aspects of the practice of palliative care were both empowering and disempowering for caregivers; they were empowered by being able to practice in an independent, autonomous way, but were also disempowered since the curriculum did not adequately consider context. The study unearthed no universal truth for a curriculum for palliative care; an African curriculum should take cognizance of an African context. I use the study findings to put forward a thesis around certainty in curriculum, and the study prompts understanding of certain curriculum in contexts that are uncertain. Key words: Certainty, curriculum, palliative care practice, context, rural homes
A review of the use of lay counsellors and rapid HIV tests in a voluntary counselling and testing service in UGU South ProTest pilot site.
(2002) Campbell, Laura.
This study aimed to review the use of lay counsellors and rapid HIV tests in a voluntary testing and counselling (VCT) service in the UGU South health district of KwaZulu Natal. The study ran from September 1999 to April 2001. In early 1999, UGU South was selected as a pilot site as part of an international initiative. This initiative aimed to promote testing for HIV by using VCT service as an entry point into a range of HIV/AIDS and TB prevention and care programmes and was termed the ProTEST Initiative. Four such ProTEST sites were developed in South Africa and all offered rapid HIV testing and prophylactic drugs (Isoniazid and Cotrimoxazole) for HIV infected people. VCT was prioritised at all sites, however UGU South was unique in providing lay counsellors. Traditionally a lay counsellor (who is not a trained health care worker), offered only pre and post- test counselling. Lay counsellors had been used in South Africa, however their impact had not been formally assessed. In accordance with the Health Professional Council ruling on testing blood, lay counsellors could not carry out a rapid HIV test procedure. The decision to use lay counsellors in UGU South, was based on a review of the capacity of existing health care workers to expand a VCT service. Ten female lay counsellors, who fulfilled pre-employment selection criteria, were employed. In 1999, VCT was prioritised by the South African Department of Health and a Strategic Plan on HIV/AIDS & STDs was developed. The aim was to test 12.5% of the adult population for HIV before the year 2005. The proposed VCT service was to be based at health facilities and was to utilize existing health care workers. The capacity of existing health care workers to cope with an expansion in VCT services had not been explored. The reasons why clients accessed VCT and the demographic profiles of such clients were poorly understood. The Department of Health also planned to use rapid HIV tests at health facilities. Literature on the use of rapid HIV tests in South Africa was limited. This study aimed to address gaps in knowledge around VCT in South Africa and specific objectives were to: * Assess the capacity of existing health care workers to expand a VCT service *Review the need for rapid HIV tests *Develop and evaluate a training, support and mentorship programme for lay counsellors *Review the reason why clients use a VCT service and the demographic profiles of such clients *Monitor the impact of lay counsellors on numbers of cases of TB diagnosed and treated *Make recommendations for the use of lay counsellors and rapid HIV tests in an expanded integrated HIV/TB Control Programme. The study was prospective, descriptive and was based at ten health facilities in UGU South. The health facilities offered counselling, rapid HIV tests and prophylaxis for HIV infected people (Isoniazid or Cotrimoxazole). The study population was all nurses, lay counsellors and clients involved with the VCT service at these sites. Both qualitative and quantitative methods of study were employed in this study including: *Postal survey * Interviews *Focus group discussion *Review of patient records, literature and questionnaires * Analysis of registers from the National TB Control Programme. Results from three independent reviews clearly indicated that nurses in UGU South did not have the capacity to offer an expanded VCT service due to a heavy workload commitment. The nurses considered that VCT was a necessary service and supported the introduction of lay counsellors. Quantitative reviews concluded that a third of people tested for HIV using a hospital based testing system never returned for their results and that the turn-around time for an HIV test result was as much as three weeks. Rapid HIV tests increased access to an HIV test result and were acceptable to health care workers. There was no review of the opinions of clients on the rapid HIV tests. A training, support and mentorship programme was developed for lay counsellors and both nurses and counsellors considered that the programme was largely effective. The lay counsellors were trained to offer a more comprehensive service than traditional lay counsellors; in particular lay counsellors were expected to screen clients for symptoms of TB disease and support clients taking TB medication. Evaluation of the programme concluded that the content should be more practical and there should be a dedicated supporter for the lay counsellors available at their place of work. Results suggested that access to VCT services increased due to the presence of lay counsellors. The lay counsellors were acceptable to health staff, however there was no review of the opinions of clients on the lay counsellors. Half of the 7 475 people tested were infected with HIV. Most clients were medically referred for VCT and had "AIDS defining" illnesses. The clients who self-referred were ill or knew someone who had died recently. The proportion of clients who self-referred increased and health education was the main reason why people self-presented. More women than men were tested and women were more likely to test HIV positive. Review of the TB registers indicated that the TB Control Programme in UGU South was not optimal. The impact of lay counsellors on numbers of TB cases diagnosed and on treatment could not be determined from this study. Before the use of lay counsellors is expanded, there should further review of the capacity of other health care workers to offer VCT. Issues such as conditions of employment, salaries and a job description for lay counsellors should be clarified. There should be an independent assessment of the quality of counselling offered and a review of the cost of the lay counsellors. The impact of using men and younger lay counsellors should be reviewed. VCT services should be based at clinics, rather than hospitals and consideration should be given to developing freestanding VCT sites. Education programmes on VCT should be expanded beyond health facilities. Prior to expanding the use of rapid HIV tests, there should be a review of the cost of rapid HIV tests and systems should be in place for ordering, delivery and for stock control. The opinions of clients on rapid HIV testing should be ascertained. Consideration should be given to lay counsellors performing the rapid HIV test or an alternative method of testing (not involving blood) should be introduced. There should be ongoing training in TB and monitoring of the TB Control Programme in UGU South. Specific indicators should be developed to monitor the impact of lay counsellors on the diagnosis and treatment of TB and to measure collaboration between HIV/AIDS and TB Control Programmes.