'Not wanting to upset' : the management of emotions in caring for the dying : an ethnographic study in Addis Ababa, Ethiopia

• Main Author: Ayers, Nicola
• Other Authors: Vydelingum, Vasso; Arber, Anne
• Published: University of Surrey 2015
• Subjects: 362.17
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.647913

Ethiopia, one of the poorest countries in the developing world, has limited resources for those with advanced cancer requiring end of life care. This thesis explores the care of the dying situation in Addis Ababa, as families access palliative care services. A critical review examined palliative care set-up in sub-Saharan Africa and the Middle East and explored models of care used and the multiple factors affecting palliative care delivery. The review revealed a dearth of knowledge about care of the dying in Addis Ababa. A further review provided insight into cultural aspects of good death. A focused ethnography, carried out over a 6-month period at a hospice facility, involved participant observation, interviews and home visits with staff, patients and family. Following thematic analysis a number of significant themes were revealed. The importance of emotional support by family and hospice staff was found to be the essence of care provision. The awareness of a terminal diagnosis is often kept from the ill person so as ‘not to upset’, thus protecting them emotionally from distress. Various communication strategies were used by staff to create openness, though ultimately they deferred to the dying person’s family; also family and hospice staff talked ambiguously about dying. Emotional care was expressed by family members ‘stopping everything’ to care for their dying relative. Through physical care, the dying person’s emotional equilibrium and comfort were maintained. Hospice staff provided a ‘family-style service’. This study offers unique understanding into non-disclosure of terminal diagnosis and how the family emotionally protects the dying person. It gives valuable insight into how families and the emerging Ethiopian palliative care service together provide care for the dying. The study has implications for international relief workers and professional carers. This study points to further research into care of the dying in rural communities in Ethiopia.