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Abstract |
The objective of this research was to determine aspects of hospice based palliative care which patients described as being important and valued. This research is to be the basis of future work on the development of consumer generated quality indicators. Palliative care managers could use these to evaluate hospice based care, and provide output measures for health providers. The methodology used by the researcher was qualitative descriptive informed by phenomenology. Six recently discharged hospice patients who had at least two episodes of palliative care were interviewed about their experience of care. The resulting data, after reflection, formed a representation; the circle of care. This included aspects of valued care generated by actions of the interdisciplinary staff, and other aspects of care generated within the palliative care environment which the patient perceived as being meaningful and important. In conclusion, the reality of people receiving palliative care is characterised by a number of supportive traditional and non-traditional aspects of caring. Although some characteristics have been described within general health and the palliative care literature, some appear to have been generated by these particular participants as part their reality. The researcher believes that the resulting representation of care requires further research in other palliative care settings. The process of interviewing terminally ill people although not without concern to the interviewer, and inherently difficult for the patients, appeared to allow the patient to tell the story of both their illness and care |
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