부산대학교 도서관

This thesis as a case study explored the narratives of a convenience sample of four women with the disease known as lupus. The author used an ethnographic approach to investigate how these women coped and how service providers, including carers, met their needs. The author used participant observation in his role as Occupational Therapist (and son) to gain access to this sample. He asked them to keep written diaries about their day-to-day experiences of living with the illness. These diaries were later given to the author to read, study and analyse. Additionally, the author’s personal ethnography as a son was submitted as data for this study. This ethnographic writing centred on the life of one sole informant, his mother, who later died with the disease in hospital. Qualitative data analysis (QDA) techniques with grounded theory origins (Glaser and Strauss 1965,1967 and Charmaz 2007) was used to analyse the data. The techniques comprised of line-by-line analysis and coding, constant comparison of cases, thematic analysis, theoretical sampling and the development of framework tables. The study revealed a range of findings, which were later conceptualised into an ethnographic ontology of lupus. First, people encounter a daily struggle to cope with illness symptoms. Second, there was evidence of poor communication between the hospital ward staff (and carers) and failure for social workers to be the main advisor/counsellor of end of life care needs including missing referrals to hospice services. Health and social care professionals sometimes struggle to provide a basic level of service leading to a “know do” gap. This leads to an inconsistent level of end of life care for the individual and limited support for the identified carers. Narratives in diary form have a role to play in helping clinical teams develop meaningful insights into their life of their patients. Clinical teams in turn need to be forthright enough to develop “death covenants” for all patients (and their carers) with palliative care needs. Developing these tools and including them as intervention turn will lead to more cohesive practices within health and social care (Dean 1996, Dean and Melrose 1996, Mol 2008).