Understanding the implications of pandemic delays for the end of life. The untold toll of Covid-19 is emerging in ‘avoidable deaths’ linked to late(r) diagnosis or treatment due to pandemic-related delay. How delays are experienced and felt across families and communities requires urgent attention. This project aims to understand the implications of pandemic delay for dying and bereavement, including the sociocultural factors that shape experiences of illness and care amid delay. The significanc ....Understanding the implications of pandemic delays for the end of life. The untold toll of Covid-19 is emerging in ‘avoidable deaths’ linked to late(r) diagnosis or treatment due to pandemic-related delay. How delays are experienced and felt across families and communities requires urgent attention. This project aims to understand the implications of pandemic delay for dying and bereavement, including the sociocultural factors that shape experiences of illness and care amid delay. The significance of this project lies in its innovative sociological approach; expected outcomes include the generation of new knowledge on needs at the end of life that move across contexts and settings. Benefits include provision of findings that will inform social and health policy and practice improvements to enable good deaths.Read moreRead less
Understanding communication about advance care planning across the lifespan. This project aims to understand how people communicate about advance care planning for children, adolescents, and adults. This project expects to generate new knowledge by using leading social scientific and linguistic methods to analyse real-world advance care planning conversations and documents. Expected outcomes include detailed knowledge about challenges people encounter in these conversations and how to manage the ....Understanding communication about advance care planning across the lifespan. This project aims to understand how people communicate about advance care planning for children, adolescents, and adults. This project expects to generate new knowledge by using leading social scientific and linguistic methods to analyse real-world advance care planning conversations and documents. Expected outcomes include detailed knowledge about challenges people encounter in these conversations and how to manage these challenges. Over 170,000 Australians die each year, most from serious illness. This project should provide significant benefits to future initiatives for enhancing communication about advance care planning, especially in relation to young Australians, older Australians, and Australians with disabilities.Read moreRead less
Discovery Early Career Researcher Award - Grant ID: DE150101262
Funder
Australian Research Council
Funding Amount
$359,753.00
Summary
Decision making in older people approaching the end of life. End of life care provides an ideal framework in which to explore the principle of individual autonomy and consumer decision making. Older people at a high risk of dying in 6 months will be recruited from acute care wards, and asked about preferences for involvement in end of life decision making in a standardised interview survey. Surrogate decision makers and physicians will be asked to answer the same questions from the patient's per ....Decision making in older people approaching the end of life. End of life care provides an ideal framework in which to explore the principle of individual autonomy and consumer decision making. Older people at a high risk of dying in 6 months will be recruited from acute care wards, and asked about preferences for involvement in end of life decision making in a standardised interview survey. Surrogate decision makers and physicians will be asked to answer the same questions from the patient's perspective (namely what they think the patient wants). Findings will suggest ways end of life care can be better tailored so that patients can participate in decisions and receive care that is consistent with their wishes.Read moreRead less
A toolkit to build the capacity of disability staff to assist adults with intellectual disability to understand and plan for their end of life. Adults with intellectual disability lack information about death and opportunities to discuss their concerns and wishes. This project will develop and trial a toolkit about end of life to train disability staff. Trained staff will use the toolkit with adults with intellectual disability to help them to understand and plan for end of life and death.
Discovery Early Career Researcher Award - Grant ID: DE150100285
Funder
Australian Research Council
Funding Amount
$372,000.00
Summary
Who cares? A sociological study of informal care at the end of life. It is often said that a society can be measured by how it cares for its most vulnerable people. Informal care for people nearing the end of life, often provided by family and friends, is a vital area of care for the vulnerable, and is coming under significant pressure in Australia. Our capacity to care is being challenged by economic, social and cultural shifts. This project aims to examine systematically the character of infor ....Who cares? A sociological study of informal care at the end of life. It is often said that a society can be measured by how it cares for its most vulnerable people. Informal care for people nearing the end of life, often provided by family and friends, is a vital area of care for the vulnerable, and is coming under significant pressure in Australia. Our capacity to care is being challenged by economic, social and cultural shifts. This project aims to examine systematically the character of informal care from multi-stakeholder perspectives, providing policy and practice-relevant evidence for better support and understanding of the role and significance of informal care for people approaching the end of life in Australian society.Read moreRead less
Pathways to and through palliative care: a sociological study of patient, carer and clinician experiences at the end-of-life. Palliative care services provide care and support for families, carers and individuals trying to cope with the challenges presented at the end of life. This project will provide critical policy and practice-relevant data in order to improve our understanding of, and support for, the dying process in Australia.
Caring at end of life: understanding the nature and effect of informal community care networks for people dying at home. This project will provide an understanding of the function and purpose of caring networks for people at the end of their life, specifically for people who are dying at home. This understanding will enable the development of communities capacity in addition to informing a national health promotion approach to palliative care.