A shared revelation : a comparative, triangulated study on improving quality of life in the terminally ill : a thesis submitted in partial fulfilment of the requirements for the degree of Master of Arts in Nursing, Massey University

Abstract

This thesis examines the concept and measurement of quality of life (QOL) in the terminally ill and how this QOL can be improved within a hospice setting. Three threads are examined to help come to an understanding of how an improvement in QOL for the terminally ill can be achieved. These threads are: what effect present hospice care has on patients' QOL; how effective nurses are at understanding the patients' perspective of that QOL; and, whether nurses could contribute to an improvement in that QOL. Seventy two patients and ten nurses participated in this comparative, triangulated research project. A control and intervention group of patients enabled comparison of the effects of an intervention (joint care planning by patient and nurse based on the patient's QOL assessment results) on patients' QOL. In the quantitative aspect of the study, a QOL questionnaire was used, by patients and nurses, to provide objective data. This quantitative data was illuminated and extended by qualitative methods namely, formal and informal interviews, written comments, field observations, and a nursing focus group. The findings of the study reveal that a better understanding of the patient can be achieved if nurses have access to the patient's QOL perspective. This better understanding, when translated into meeting patients' QOL priorities and needs, results in clinically significant improvements in their QOL. Reflective practice in nurses, promoted by exposure to differences in patient/nurse perspectives, was demonstrated. Reflective practice resulted in behavioural changes in the participating nurses, increasing their awareness of QOL issues for subsequent patients and influencing their on-going palliative care. The theme of 'revelation' encapsulates the insights gained from the research process for patients, nurses, and the researcher. Such revelation was personal and, in some cases, life-changing for the patients, and involved both personal and professional dimensions for the others. The study concludes by suggesting ways in which revelation can be sustained in the hospice setting. The recommendations cover personal, professional, and organisational dimensions. If implemented, the recommended changes would enhance patients' QOL through the continuing development of advanced palliative care nursing skills. The early pioneering philosopy of palliative care would thus be perpetuated in the development of new ways of caring. Palliative care could then confidently continue to demonstrate its unique place within the health services.