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
Discussing Prognosis & End-of-life Issues In Palliative Care: Current Practice & Dvlpmnt Of Evidence Based Trng Program
Funder
National Health and Medical Research Council
Funding Amount
$149,955.00
Summary
Discussing prognosis and end-of-life issues is of key importance to palliative care patients and their families. We will a) prepare evidence based communication guidelines on these topics, b) analyse audio-taped consultations to see how these issues are currently discussed and c) develop and pilot a communication training module for palliative care clinicians. This could improve clinical practice, enhance patients' and families' psychological well-being and help patients to make appropriate deci ....Discussing prognosis and end-of-life issues is of key importance to palliative care patients and their families. We will a) prepare evidence based communication guidelines on these topics, b) analyse audio-taped consultations to see how these issues are currently discussed and c) develop and pilot a communication training module for palliative care clinicians. This could improve clinical practice, enhance patients' and families' psychological well-being and help patients to make appropriate decisions and prepare for their death.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
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 In Aged Care Facilities For Residents With A Non-cancer Diagnosis
Funder
National Health and Medical Research Council
Funding Amount
$70,000.00
Summary
Preliminary studies have suggested there may be deficiencies in the care of residents in aged care facilities who have advanced terminal illnesses other than cancer. Aged care residents do not have access to the expertise and resources available to clients of palliative care services where cancer is the major diagnosis. This study aims to investigate the extent and nature of any deficits experienced in aged care facilities and to employ palliative care standards to develop strategies so that any ....Preliminary studies have suggested there may be deficiencies in the care of residents in aged care facilities who have advanced terminal illnesses other than cancer. Aged care residents do not have access to the expertise and resources available to clients of palliative care services where cancer is the major diagnosis. This study aims to investigate the extent and nature of any deficits experienced in aged care facilities and to employ palliative care standards to develop strategies so that any unmet needs can be addressed.Read moreRead less
Improving QOL At The End Of Life: A Randomised Controlled Trial Of A Doctor-nurse-patient Intervention.
Funder
National Health and Medical Research Council
Funding Amount
$687,655.00
Summary
This project aims to promote mutual understanding between patients with incurable disease, carers and clinicians about prognosis, end of life issues and treatment goals in order to improve the quality of remaining life. Currently many patients do not understand their prognosis and make poor decisions about treatment, receiving costly, futile and invasive treatments just days before death. This project will empower patients and doctors to better discuss these issues.
The Enhanced Advance Care Planning And Life Review Longitudinal Intervention (EARLI) Study: Increasing Proactive Care Planning In Australian Community Aged Care Settings
Funder
National Health and Medical Research Council
Funding Amount
$955,828.00
Summary
The Enhanced Advance care planning and life Review Longitudinal Intervention (EARLI) project will proactively screen older adults at high-risk of health decline and provide assistance to discuss and document preferences for future care. The intervention is implemented in the community aged care setting, through partnerships with home care providers. Expected benefits include increased rates of advance care planning, higher quality documents and improved wellbeing among older adults and carers.
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