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
A National Analysis Of The Palliative And Supportive Care Needs Of Families Whose Children Die From Cancer
Funder
National Health and Medical Research Council
Funding Amount
$68,250.00
Summary
Palliative and supportive care services for children dying from cancer are underdeveloped in the paediatric setting. There is an increasing awareness of the need for comprehensive care for these dying children and their families, however, there is a striking lack of evidence based literature on which to base paediatric palliaitive and supportive care models of care. This study is the first of its kind in the area of paediatric supportive and palliative care in Australia. This study will involve ....Palliative and supportive care services for children dying from cancer are underdeveloped in the paediatric setting. There is an increasing awareness of the need for comprehensive care for these dying children and their families, however, there is a striking lack of evidence based literature on which to base paediatric palliaitive and supportive care models of care. This study is the first of its kind in the area of paediatric supportive and palliative care in Australia. This study will involve five Australian states (WA, SA, VIC, NSW and QLD). To answer these research questions, a retrospective study will be undertaken because of: a)the profound impact that caring for a dying child has on the family, b) the potential effects on parents of participating in research related to the care of their dying child, and c) it has been shown that research undertaken after-death is an important method for evaluation of the quality of palliative care. The study will provide broad and detailed description of the palliative and supportive care needs of families whose died from cancer, as well as the types of care that may be required. The study will therefore, address four research questions: 1. What are the supportive and palliative care needs of families of children who have died from cancer? 2. To what extent have the supportive care and palliative care needs of families been met in both the hospital and community settings? 3. How were the supportive and palliative care needs of families of children who died from cancer met? 4. What were the perceived barriers and facilitating factors associated with the supportive care and palliative care received by families whose children died from cancer? This study is the first phase of a four-phase research program that will culminate in the development and testing of models for the provision of palliative and supportive care for parents of children with life-limiting 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
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
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
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