Certain the curriculum ; uncertain the practice : palliative care in context.

Abstract

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