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Determining Critical Points In The Potential Palliative Care Pathway In The Last Year Of Life
Funder
National Health and Medical Research Council
Funding Amount
$356,461.00
Summary
People with serious illnesses who are approaching the end of their lives undergo a journey where, along the way, they experience several critical points. Although we know these critical points are crucial to how they might access the best kind of care, we are unsure exactly when these points may occur and how they may vary for different kinds of people. We need to know when is the best time to start withdrawing invasive and purely curative treatments, when are discussions about approaching death ....People with serious illnesses who are approaching the end of their lives undergo a journey where, along the way, they experience several critical points. Although we know these critical points are crucial to how they might access the best kind of care, we are unsure exactly when these points may occur and how they may vary for different kinds of people. We need to know when is the best time to start withdrawing invasive and purely curative treatments, when are discussions about approaching death best introduced and how we can care for people from a diverse range of backgrounds and beliefs within our current health care system. We also need to identify and promote the best possible ways of supporting patients at the end of life and their families as they negotiate the often complex path towards a good death. With this kind of information, health care practitioners, particularly those involved in palliative care, can design better services that put in place pathways where assessment of patient and family needs, referral to the most appropriate services and coordination of all the aspects of care are easy to understand and access for all people. This kind of care can be expensive so we need to use the money allocated to palliative care wisely. This can be achieved with thoughtful research that identifies those most in need, at the time of most need and investigates the best approaches to alleviating pain in suffering in the weeks and months before death. A fair and equitable health care system is not just about keeping people healthy, but also about dealing humanely with the inevitability of deathRead moreRead less
Safety and resiliency at home: voices of children who live with fear. Finding out what can help children feel safer who are currently living in households where there is family violence will enable early intervention for better outcomes for such children. This research is significant because it will focus on targeting appropriate responses by listening to the views of children themselves and hence finding out what is really helpful for them to build resiliency. This is important to the work of a ....Safety and resiliency at home: voices of children who live with fear. Finding out what can help children feel safer who are currently living in households where there is family violence will enable early intervention for better outcomes for such children. This research is significant because it will focus on targeting appropriate responses by listening to the views of children themselves and hence finding out what is really helpful for them to build resiliency. This is important to the work of a key family welfare agency (Berry St) but it also has benefit for health and welfare workers throughout Australia. Appropriate early intervention will not only help the families concerned but will strengthen Australia's economic and social fabric, a priority goal of the national research agenda.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
Discovery Early Career Researcher Award - Grant ID: DE120101640
Funder
Australian Research Council
Funding Amount
$375,000.00
Summary
The caregiver bereavement study: determining the effect of caregivers' anticipatory grief on post-bereavement outcome. The study discovers the 'true' impact of caregiving and is situated at the forefront of theoretical and methodological innovation. Furthermore, it will enhance the nation's capacity to provide appropriate services to caregivers pre- and post-bereavement which will promote the wellbeing of the large number of caregivers in our communities.
Dignity Therapy: A Novel Psychotherapeutic Intervention for Motor Neurone Disease (MND) Patients near the End of Life. Considering the scarcity of effective interventions for the kinds of distress and suffering that so commonly occur amongst MND dying patients, this novel therapeutic intervention could become a very easy, practical intervention adopted within palliative care facilities and MND organisations. Unlike most palliative care interventions, this approach, leading to the production of a ....Dignity Therapy: A Novel Psychotherapeutic Intervention for Motor Neurone Disease (MND) Patients near the End of Life. Considering the scarcity of effective interventions for the kinds of distress and suffering that so commonly occur amongst MND dying patients, this novel therapeutic intervention could become a very easy, practical intervention adopted within palliative care facilities and MND organisations. Unlike most palliative care interventions, this approach, leading to the production of a generativity document, has the important added potential benefit of being a powerful bereavement intervention for carers. The potential benefits of this intervention could lead to a reduction in in-patient admissions and a reduced need for respite for both the person with MND and the family carer.Read moreRead less
The emotional and social burden of caring for a young child with complex health needs. The National Agenda for Early Childhood and the Stronger Families and Community Strategy provide a framework for achieving efficient and effective outcomes in early childhood. This project will contribute to those strategies by gaining an understanding of the currently unknown issues faced by the group of families of young infants and children with complex health needs in a variety of geographic, community and ....The emotional and social burden of caring for a young child with complex health needs. The National Agenda for Early Childhood and the Stronger Families and Community Strategy provide a framework for achieving efficient and effective outcomes in early childhood. This project will contribute to those strategies by gaining an understanding of the currently unknown issues faced by the group of families of young infants and children with complex health needs in a variety of geographic, community and service settings, and the government supported services required. The identification of risk and resilience factors will enable the early detection of children at 'high-risk' and provide the opportunity to implement preventative and early intervention programs.Read moreRead less
Model of care: A family focussed approach to promote child protection. Childhood neglect and abuse is an issue for all Australians. Models of best practice for child protection services are essential to protect the well-being of these children. This project will draw upon information from consumers and workers to provide a framework for a sustainable model of best practice for child protection that is transferable to other settings. A further benefit of this study is that it will provide insight ....Model of care: A family focussed approach to promote child protection. Childhood neglect and abuse is an issue for all Australians. Models of best practice for child protection services are essential to protect the well-being of these children. This project will draw upon information from consumers and workers to provide a framework for a sustainable model of best practice for child protection that is transferable to other settings. A further benefit of this study is that it will provide insight into occupation health and safety issues associated with working in long term relationships with vulnerable families. Read moreRead less
Discovery Early Career Researcher Award - Grant ID: DE200100343
Funder
Australian Research Council
Funding Amount
$427,115.00
Summary
Dying well: Designing rural end-of-life services for chronic disease. This project aims to understand how existing rural service structures impact access to end-of-life support in chronic conditions. Chronic diseases account for 90% of deaths in Australia, yet access to end-of-life support is limited and little is known about services in rural areas. Information gathered through patient and stakeholder interviews, national survey and service mapping will be used to generate a new evidence-based ....Dying well: Designing rural end-of-life services for chronic disease. This project aims to understand how existing rural service structures impact access to end-of-life support in chronic conditions. Chronic diseases account for 90% of deaths in Australia, yet access to end-of-life support is limited and little is known about services in rural areas. Information gathered through patient and stakeholder interviews, national survey and service mapping will be used to generate a new evidence-based framework and guideline. These outputs will support early engagement with end-of-life planning, known to improve quality of life and reduce health system costs, and to inform development of equitable future end-of-life services for people and their families living with chronic conditions across rural Australia. Read moreRead less
Disaster risk reduction practices that leave nobody behind. This project aims to answer critical questions about how to assist people with disabilities (PWD) in disasters, what their support needs are and how they might help themselves to better prepare for disasters. Significance includes coupling a person-centred emergency preparedness tool with cross-sectoral processes to collect and use data about the support needs of PWD in emergencies, increase cross-sector communication and collaboration ....Disaster risk reduction practices that leave nobody behind. This project aims to answer critical questions about how to assist people with disabilities (PWD) in disasters, what their support needs are and how they might help themselves to better prepare for disasters. Significance includes coupling a person-centred emergency preparedness tool with cross-sectoral processes to collect and use data about the support needs of PWD in emergencies, increase cross-sector communication and collaboration between emergency managers and community services, and improve equitable access for PWD to community-level disaster risk reduction (DRR). The expected outcome will be the co-design of effective mechanisms that state & federal decision makers can use to scale-up disability-inclusive DRR across Australia.Read moreRead less
Food services in residential aged care: Financial, personnel, and service delivery factors. Evaluating current services to identify systems that deliver satisfying, effective, high quality care to vulnerable older Australians in aged care facilities (ACFs) is of national significance. If residents are more satisfied with their meals, their nutritional status will either improve or stabilise, reducing their risk of malnutrition-related morbidity and mortality and the associated financial burden t ....Food services in residential aged care: Financial, personnel, and service delivery factors. Evaluating current services to identify systems that deliver satisfying, effective, high quality care to vulnerable older Australians in aged care facilities (ACFs) is of national significance. If residents are more satisfied with their meals, their nutritional status will either improve or stabilise, reducing their risk of malnutrition-related morbidity and mortality and the associated financial burden to health care services. The cost of residential aged care is significant and growing and is subject to increased monitoring and concern. This project will suggest refinements of the Aged Care Accreditation Standards to improve their applicability to ACF residents and appropriateness for evaluating resident-focused nutritional care.Read moreRead less