Towards An Evidence-Based Model Of Paediatric Palliative Care
Funder
National Health and Medical Research Council
Funding Amount
$73,722.00
Summary
The aim of this study is to improve the evidence base in paediatric palliative care by determining: How families come to realise the need for palliative care; How health professionals (paediatricians, general practitioners, palliative care workers) come to realise the need for palliative care; What aspects of palliative care are of greatest value to dying children and their families; How families experience the service system as it is currently configured including community-based palliative car ....The aim of this study is to improve the evidence base in paediatric palliative care by determining: How families come to realise the need for palliative care; How health professionals (paediatricians, general practitioners, palliative care workers) come to realise the need for palliative care; What aspects of palliative care are of greatest value to dying children and their families; How families experience the service system as it is currently configured including community-based palliative care providers; The degree to which the views of health professionals accord with those of parents, and the extent to which this influences perceived quality of service delivery; and If, and to what extent the needs of children with malignant conditions differ from those with non-malignant conditions.Read moreRead less
Palliative Care For Aboriginal And Torres Strait Islander People With End-stage Renal Disease: An Action Research Initiati
Funder
National Health and Medical Research Council
Funding Amount
$295,554.00
Summary
There are significant gaps in current knowledge for providing culturally appropriate and effective palliative care for Aboriginal and Torres Strait Islander people with kidney failure. This project will consider these issues in partnership with the Kowanyama Community and the associated key Aboriginal and Torres Strait Islander and other agencies. Echoing the recommendations by the �National Indigenous Palliative Care Needs Study� this study will address the absence of a culturally appropriate m ....There are significant gaps in current knowledge for providing culturally appropriate and effective palliative care for Aboriginal and Torres Strait Islander people with kidney failure. This project will consider these issues in partnership with the Kowanyama Community and the associated key Aboriginal and Torres Strait Islander and other agencies. Echoing the recommendations by the �National Indigenous Palliative Care Needs Study� this study will address the absence of a culturally appropriate model of care pathway for Aboriginal and Torres Strait Islander people with advanced kidney failure to make effective informed choices for palliative care. Through the use of action research methodology this study will engage with Aboriginal and Torres Strait Islander people to consider these issues, taking into consideration their cultural, spiritual and social needs, those of their family, carers, healthcare personnel and the wider community. Subject to discussions and input from the Aboriginal and Torres Strait Islander people and other key stakeholders it is anticipated that the key areas of interest will focus on spirituality, quality of life, role of the family, carer and community, understandings and experience of kidney failure, treatment options, patient advocacy systems, the need for relocation, and the potential role of advanced care planning. Intervention strategies will also be conducted and evaluated. Subject to discussions and input from the Aboriginal and Torres Strait Islander participants and other key stakeholders it is anticipated that these will focus on a community based education program, development of a culturally appropriate quality of life questionnaire, development and piloting of a culturally appropriate mechanism for people to consider advanced care planning and development and piloting of a patient advocacy process for those from remote areas visiting metropolitan renal - palliative care health services.Read moreRead less
Does Palliative Chemotherapy Palliate? Measuring Symptom Benefit In Recurrent Ovarian Cancer Using Patient Reported Outcomes: The Symptom Benefit Study
Funder
National Health and Medical Research Council
Funding Amount
$405,024.00
Summary
Clinical trials for women with recurrent ovarian cancer traditionally use a reduction in tumour size and time to progression to measure the benefit of chemotherapy, but do not document whether women have symptom improvement as well. The aim of the Symptom Benefit Study is to validate an instrument that will allow patients to report their symptoms and degree of improvement and for the first time allow clinical trials to include a measure of symptom improvement when new drugs are being tested.
An Ethnographic Study Of The Meaning Of Cancer To Aboriginal Women
Funder
National Health and Medical Research Council
Funding Amount
$26,477.00
Summary
The impetus for development of the palliative care movement was the plight of cancer patients, which is why my study aims to explore and interpret what cancer means to Aboriginal women and how experiences and perception of the disease impacts on their attitudes toward treatment options. In my thesis I hope to build a critique of Aboriginal women�s perceptions of cancer that will inform health care services of socio-cultural issues that should be considered in developing and providing culturally ....The impetus for development of the palliative care movement was the plight of cancer patients, which is why my study aims to explore and interpret what cancer means to Aboriginal women and how experiences and perception of the disease impacts on their attitudes toward treatment options. In my thesis I hope to build a critique of Aboriginal women�s perceptions of cancer that will inform health care services of socio-cultural issues that should be considered in developing and providing culturally supportive care.Read moreRead less
Early Referral To Palliative Care; A Randomised Trial Of Patients With Metastatic Cancers & A Survival Expec Of
Funder
National Health and Medical Research Council
Funding Amount
$81,250.00
Summary
It is not known when, in the course of incurable cancer, palliative care advice should be sought. A randomised trial will be conducted on patients consulting with a medical or radiation oncologist. Consenting patients will be randomised to either receive palliative care advice immediately or somewhat later after diagnosis. The consequences of early contact with palliative care professionals will be documented using a range of patient measures including quality of life, symptom control and assess ....It is not known when, in the course of incurable cancer, palliative care advice should be sought. A randomised trial will be conducted on patients consulting with a medical or radiation oncologist. Consenting patients will be randomised to either receive palliative care advice immediately or somewhat later after diagnosis. The consequences of early contact with palliative care professionals will be documented using a range of patient measures including quality of life, symptom control and assessment of unmet needs. The research includes a cost consequence analysis.Read moreRead less
Assessment Of The Effectiveness Of Australian Models Of Palliative Care Delivery In Four Neurodegenerative Disorders
Funder
National Health and Medical Research Council
Funding Amount
$150,000.00
Summary
This study will be conducted in three Australian states (Queensland, Victoria and West Australia), to assess the effectiveness of existing palliative care service delivery to people with motor neurone disease, multiple sclerosis, Huntington’s disease or Parkinson’s disease, and to their families. In phase I, interviews will be conducted with people who have these diseases, their families, and health professionals to discover the needs for palliative care services. In phase II, a survey will dete ....This study will be conducted in three Australian states (Queensland, Victoria and West Australia), to assess the effectiveness of existing palliative care service delivery to people with motor neurone disease, multiple sclerosis, Huntington’s disease or Parkinson’s disease, and to their families. In phase I, interviews will be conducted with people who have these diseases, their families, and health professionals to discover the needs for palliative care services. In phase II, a survey will determine the extent to which these needs are met. The findings will be used to recommend improved palliative care delivery models.Read moreRead less
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
Clinical Correlates Of The Wish To Hasten Death Among The Terminally Ill
Funder
National Health and Medical Research Council
Funding Amount
$131,360.00
Summary
There is little research that has directly examined the role of the health professional in a patient's wish to die and the implications of this for the support and development of services to provide care to a dying patient. The aim of this study is to examine factors in the health service, clinical care and social environment that influence the wish to hasten death among terminally ill patients. This is an issue of increasing importance in our community as legislative change is undertaken to ena ....There is little research that has directly examined the role of the health professional in a patient's wish to die and the implications of this for the support and development of services to provide care to a dying patient. The aim of this study is to examine factors in the health service, clinical care and social environment that influence the wish to hasten death among terminally ill patients. This is an issue of increasing importance in our community as legislative change is undertaken to enable assisted suicide in the terminally ill. In particular, there is very limited published research on these issues which have accessed a subject pool of patients who are based in services that specifically provide care for the terminally ill. A specific focus of this study is to examine the factors within the doctor-patient relationship that may influence a patient's wish to hasten death. The doctor's experience of subjective burden in caring for a dying patient, level of confidence in patient management and features of the doctor-patient relationhip will be assessed. This will essentially be an exploratory study which will attempt to establish methodologies that will help to increase an understanding of why some patients request euthanasia, thus leading to the establishment of sound management strategies, as well as contribute empirical data to the euthanasia debate.Read moreRead less
The Investigation Of Innovative Telemedicine Models To Support Palliative Care Delivery In Rural And Remote Australia
Funder
National Health and Medical Research Council
Funding Amount
$86,870.00
Summary
This project will investigate the impact of videophone communication between patients wishing to remain at home for their palliative care and their outreach nurses in a remote setting. Patients visited at home will be identified by their palliative care nurses and asked to give consent to have a videophone installed. The carers and nurses will evaluate the impact of the videophones using a questionnaire at the completion of the episode of care. Because suitable telephone lines are available thro ....This project will investigate the impact of videophone communication between patients wishing to remain at home for their palliative care and their outreach nurses in a remote setting. Patients visited at home will be identified by their palliative care nurses and asked to give consent to have a videophone installed. The carers and nurses will evaluate the impact of the videophones using a questionnaire at the completion of the episode of care. Because suitable telephone lines are available throughout most country areas and the devices are portable and as easy to use as a telephone the use of videophones between palliative care nurses and remote nurses or between patients, if effective, will be widely applicable.Read moreRead less