Carers of the terminally ill: an Australian study

This paper reports on the results of an Australian community-based palliative care research project which investigated and compared the effectiveness of existing support systems for paid (community nurses) and unpaid (primary carers) care givers in a regional health care center in New South Wales, Australia. In particular it looked at the needs, concerns, effects, and perceived adequacy of support system on carers. Methodology employed in the study relied on both qualitative and quantitative methods. Qualitative data was obtained by using a questionnaire which obtained demographic data about the carers. In addition, a series of taped open-ended questions were posed to the carers on the impact and experience of caring for the terminally ill. Taped interviews were analyzed using content analysis and elicitation of themes. Qualitative techniques utilized the Inventory of Socially Supportive Behaviors (ISSB). Examination of data collected using simple frequencies and percentages allowed cross examination of paid care givers and the questionnaire was used to assess perceived support of both sets of participants. A Wilcoxan Signed Rank non-paramedic statistic was applied for data analysis. The results highlighted that unpaid and paid carers were older, required increased respite-care facilities, and lacked personal support. The recommendations from the study amongst other aspects highlighted the need for the expansion of palliative care services. This would provide the option for patients to die at home, while lessening the burden of care on their families.