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Certain Death In Uncertain Time: A Qualitative Study Of The Experience Of Advanced Ovarian Cancer.
Funder
National Health and Medical Research Council
Funding Amount
$221,755.00
Summary
Modern medicine aims to find effective treatments for life-threatening diseases. Cures are seldom found, however. More typically, rapidly fatal diseases gradually become less rapidly fatal. Consequently, there is a category of patients who are certain they will die from their disease or a related factor, but who are equally uncertain as to whether they have weeks or years left to live. It is difficult to discuss this predicament because we do not even have a name for it, let alone a useful termi ....Modern medicine aims to find effective treatments for life-threatening diseases. Cures are seldom found, however. More typically, rapidly fatal diseases gradually become less rapidly fatal. Consequently, there is a category of patients who are certain they will die from their disease or a related factor, but who are equally uncertain as to whether they have weeks or years left to live. It is difficult to discuss this predicament because we do not even have a name for it, let alone a useful terminology to describe it. The absence of discussion exacerbates patients' social isolation. Also, the quality of their remaining life, and the quality of the care they get, depends heavily on the quality of understanding and communication within the social systems that support them. A growing proportion of patients in developed countries fall into this category, including the 1200 Australian women who are diagnosed each year with advanced ovarian cancer. This study aims to increase our understanding of the experience of certain death in uncertain time by recruiting a group of 20 women with advanced ovarian cancer, and interviewing them every few months over three years. The study will explore all aspects of the experience of having advanced ovarian cancer, and generate a terminology for it - one that grows out of the women's own language. The study will inform the organisation and delivery of clinical care and services to women with ovarian cancer. It will also inform patient education programs, and help to tune medical education to the particular needs and perceptions of patients who are experiencing the certainty of death in uncertain time. Finally, the researchers will also explore the implications of the findings for medical ethics and health law, and for communication, information and decision-making in cancer medicine.Read moreRead less
Health Care Priorities: The Community's Preferences For Using Community Preferences
Funder
National Health and Medical Research Council
Funding Amount
$52,355.00
Summary
Determining how health care resources should be allocated - often termed rationing or priority setting - has traditionally been carried out by health care personnel, usually doctors but increasingly managers. More recently there has been a move to involve the general public in this process. Much of the research in this area has focussed on the methods used to elicit community preferences. While this is an important area of investigation, a prior issue of how community members feel about the use ....Determining how health care resources should be allocated - often termed rationing or priority setting - has traditionally been carried out by health care personnel, usually doctors but increasingly managers. More recently there has been a move to involve the general public in this process. Much of the research in this area has focussed on the methods used to elicit community preferences. While this is an important area of investigation, a prior issue of how community members feel about the use of their preferences in informing health care priorities needs to be investigated. Four specific questions will be addressed in this study: (i) do members of the general public feel that, as individuals, they have a legitimate role to play in informing priority decisions in health care? if so why? if not, why not? (ii) does the nature-level-setting of the decisions for which priorities are to be set affect whether individual members of the public would wish to participate in the priority setting process? (e.g. different health services, medical procedures-treatments, diseases) (iii) whose preferences should be used if not the community's? (iv) faced ex post with the preferences of the community and the preferences (possibly different) of health service decision makers (i.e. Oexperts'), does this knowledge affect preferences for having community preferences count? A number of health authorities are currently looking for ways of engaging local communities in health care decision making. This study will indicate the appropriate levels at which community preferences are to be elicited and the type of decisions and settings in which they are most relevant.Read moreRead less
Genetic Dissection Of The Biogenesis And Function Of Type IV Fimbriae Of Pseudomonas Aeruginosa
Funder
National Health and Medical Research Council
Funding Amount
$407,545.00
Summary
Pseudomonas aeruginosa is a common bacterium which causes serious life-threatening infections of individuals with cystic fibrosis, AIDS or who have suffered severe burns or are undergoing cancer chemotherapy. This pathogen, and a number of other important infectious bacteria use surface filaments, called fimbriae, like grappling hooks to attach to the cells of the body and to move across host tissues. These fimbriae are produced in response to environmental conditions, and are assembled by a pro ....Pseudomonas aeruginosa is a common bacterium which causes serious life-threatening infections of individuals with cystic fibrosis, AIDS or who have suffered severe burns or are undergoing cancer chemotherapy. This pathogen, and a number of other important infectious bacteria use surface filaments, called fimbriae, like grappling hooks to attach to the cells of the body and to move across host tissues. These fimbriae are produced in response to environmental conditions, and are assembled by a process that is also used in the export of toxins and other pathogenic molecules. This project will characterise genes which specify and control this system, as a means to design better treatments against such bacteria, many of which are resistant to antibiotic treatment.Read moreRead less
What Do Australians Think About Privacy And Participation In Epidemiological Research?
Funder
National Health and Medical Research Council
Funding Amount
$443,015.00
Summary
There is very little research available, in Australia or internationally, about what the general public considers privacy to be; or how important privacy protection is in the context of high and low risk epidemiological studies. We also know little about what affects willingness to participate in epidemiological research. Our research will provide an evidence base, and develop resources for the legislature, the NHMRC, ethics committees and researchers.
Analysis Of A Chemosensory Complex That Controls Twitching Motility And Virulence In Pseudomonas Aeruginosa
Funder
National Health and Medical Research Council
Funding Amount
$346,250.00
Summary
Pseudomonas aeruginosa is a common bacterium which causes serious life-threatening infections of individuals with cystic fibrosis, AIDS or who have suffered severe burns or are undergoing cancer chemotherapy. Infection by this pathogen requires the controlled expression of a large number of virulence factors including extracellular enzyme, toxins and structures for the attachment and colonisation of host tissues. We have identified a complex multicomponent regulatory system which coordinates the ....Pseudomonas aeruginosa is a common bacterium which causes serious life-threatening infections of individuals with cystic fibrosis, AIDS or who have suffered severe burns or are undergoing cancer chemotherapy. Infection by this pathogen requires the controlled expression of a large number of virulence factors including extracellular enzyme, toxins and structures for the attachment and colonisation of host tissues. We have identified a complex multicomponent regulatory system which coordinates the expression of many of the virulence determinants of this pathogen. This project aims to dissect the intermolecular interactions and signalling events which input into, occur within, and output from this regulatory system. This knowledge will provide a platform for developing rational strategies for the production of new antimicrobials for fighting infections by this and related pathogens.Read moreRead less