Needs Based Palliative Care: Evaluation Of The Palliative Care Needs Assessment Guidelines And Palliative Care Needs Ass
Funder
National Health and Medical Research Council
Funding Amount
$32,799.00
Summary
People with cancer and their caregivers may have a range of unmet physical, emotional, social and spiritual needs. Unfortunately, not everybody receives the type of help they need with these issues, or at the time they most need it. In this study, we will assess the extent to which recently developed Palliative Care Needs Assessment Guidelines and a Needs Assessment Tool help to a) identify those advanced cancer patients and caregivers who have unmet needs and b) ensure they are offered the care ....People with cancer and their caregivers may have a range of unmet physical, emotional, social and spiritual needs. Unfortunately, not everybody receives the type of help they need with these issues, or at the time they most need it. In this study, we will assess the extent to which recently developed Palliative Care Needs Assessment Guidelines and a Needs Assessment Tool help to a) identify those advanced cancer patients and caregivers who have unmet needs and b) ensure they are offered the care that best matches their levels and types of need at the time they most need it.Read moreRead less
Helping Family Caregivers Of Palliative Care Patients Manage Their Roles: Evaluation Of A Hospital Based Group Education
Funder
National Health and Medical Research Council
Funding Amount
$219,810.00
Summary
While most people would prefer to die at home, the reality is that about two thirds of people die in in-patient settings, such as palliative care units. A home death is more likely if family caregivers are well prepared and supported in their role. Palliative care services are expected to support family caregivers. Research shows, however, that many family caregivers lack the required information to effectively manage their role. They are also prone to suffer psychological distress while support ....While most people would prefer to die at home, the reality is that about two thirds of people die in in-patient settings, such as palliative care units. A home death is more likely if family caregivers are well prepared and supported in their role. Palliative care services are expected to support family caregivers. Research shows, however, that many family caregivers lack the required information to effectively manage their role. They are also prone to suffer psychological distress while supporting their dying relative. Caregivers have expressed a desire for structured information to better prepare them for their role, whether their dying relative is in hospital, a palliative care unit or at home. The aim of this project is to develop and evaluate an educational program offered to family caregivers who are supporting a relative who is receiving palliative care in an inpatient setting. The education program seeks to help family caregivers manage their role and to prepare them for the patient�s home care where appropriate. It is hoped that family caregivers who have attended the program will be more competent, better prepared and more informed about their caregiving role. An additional benefit from attending the program will be the opportunity for family caregivers to meet others in similar situations to themselves. Each education program will involve approximately six family caregivers; it will be conducted very soon after their relative has been admitted to the palliative care unit. The program will be of two hours duration (including time for data collection) and will be facilitated by a suitably qualified health professional. Written resources will be provided and caregivers will be given the opportunity to meet with staff from the multidisciplinary team. Referrals for scheduled consultations will be made where relevant. The program will be conducted in three sites (two in Victoria and one in Western Australia) and will be comprehensively evaluated. The caregivers who attend the program will be invited to provide feedback by completing several questionnaires designed to determine the effectiveness of the program. Group education programs of this kind have previously not been rigorously developed and tested. We seek to address this and hope to demonstrate that we can positively influence the family care giving experience.Read moreRead less
Needs Based Access To Specialist Palliative Care Services: Development And Evaluation Of A Consumer Toolkit
Funder
National Health and Medical Research Council
Funding Amount
$286,572.00
Summary
The study will test the cost-effectiveness of two models of supportive care coordination for advanced cancer against _usual care�: a Telephone Caseworker model and an Oncologist-GP model. Both models are aimed at improving patients� and their informal caregivers� health and psychosocial status; are patient-centred, evidence based and readily transferable across health care settings. The Telephone Caseworker model has the additional advantage of reaching people isolated through geography, physica ....The study will test the cost-effectiveness of two models of supportive care coordination for advanced cancer against _usual care�: a Telephone Caseworker model and an Oncologist-GP model. Both models are aimed at improving patients� and their informal caregivers� health and psychosocial status; are patient-centred, evidence based and readily transferable across health care settings. The Telephone Caseworker model has the additional advantage of reaching people isolated through geography, physical disability or age.Read moreRead less
Improving The Psychological Wellbeing Of Family Caregivers Of Home Based Palliative Care Patients: A Randomised Controll
Funder
National Health and Medical Research Council
Funding Amount
$300,000.00
Summary
Support for family caregivers during the care giving phase and into bereavement is a core element of palliative care philosophy and practice. The majority of people report a preference to be cared for at home yet only about a quarter of Australians receiving palliative care services have a home death. Family caregivers provide the bulk of support to patients receiving palliative care at home and without this contribution the well-being of patients and their capacity to remain at home would be co ....Support for family caregivers during the care giving phase and into bereavement is a core element of palliative care philosophy and practice. The majority of people report a preference to be cared for at home yet only about a quarter of Australians receiving palliative care services have a home death. Family caregivers provide the bulk of support to patients receiving palliative care at home and without this contribution the well-being of patients and their capacity to remain at home would be compromised. Many research studies have acknowledged the negative psychological, physical, social and financial impact experienced by family caregivers who care for a relative requiring palliative care at home. Family caregivers report a variety of unmet needs throughout the palliative care and bereavement process, despite input from health care services and have been referred to as �hidden patients�. Support for family caregivers is often crisis driven. Resource issues in rural areas add to the challenges of providing optimal family centred support. Hence, it is difficult to claim that palliative care services pro-actively provide effective targeted support for family caregivers and for the most part, family situations with unmet needs prevail. Family caregivers want information that prepares them for what is involved in supporting a dying relative, on how to provide patient comfort, practical care needs and strategies to minimise their own psychological burden. Our study specifically responds to these identified needs by evaluating a home based intervention that aims to enhance the psychological well-being of family caregivers. Family caregivers will receive two home visits from a palliative care nurse, written resources and phone support. A care plan will be developed in partnership with the local palliative care service.Read moreRead less
A Model Of Current & Potential Palliative Care Constituency: Measuring Met & Unmet Needs
Funder
National Health and Medical Research Council
Funding Amount
$145,210.00
Summary
Although many health care providers believe palliative care should be offered to all Australians who need it, there is no population-based data to support this claim. This study will provide much needed population-based evidence by measuring the levels of met and unmet needs of people with active, progressive, advanced disease in the last 12 months of their lives. A model of current and potential palliative care constituency will be developed that will lead to improved access to palliative care ....Although many health care providers believe palliative care should be offered to all Australians who need it, there is no population-based data to support this claim. This study will provide much needed population-based evidence by measuring the levels of met and unmet needs of people with active, progressive, advanced disease in the last 12 months of their lives. A model of current and potential palliative care constituency will be developed that will lead to improved access to palliative care for people who do not traditionally access specialist palliative care services.Read moreRead less
Needs Based Palliative Care: Development And Evaluation Of A Consumer Toolkit
Funder
National Health and Medical Research Council
Funding Amount
$68,500.00
Summary
People with advanced cancer and their caregivers may have a range of unmet physical, emotional, social and spiritual needs. Unfortunately, not everybody receives the type of help they need with these issues, or at the time they most need it. Our study will develop and trial a strategy aimed at helping patients and their caregivers to identify their own levels of unmet needs and to communicate these to their health care team, to improve needs-based palliative care.
A longitudinal study exploring women's experiences following a prenatal diagnosis of fetal abnormality. In Australia four per cent of babies are born with a congenital abnormality, many of which are detected during pregnancy. Little is known about women's experiences of a diagnosis. The aim of this study is to explore women's experiences following the diagnosis of a fetal abnormality during pregnancy, in order to develop appropriate models of supportive care.
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
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