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
Development Of A Palliative Care Service For Rural And Remote Communities
Funder
National Health and Medical Research Council
Funding Amount
$150,000.00
Summary
This project will develop, implement and evaluate a new model of providing palliative care to individuals in rural and remote communities that will utilise existing health and community resources to provide palliative care. As the number of patients requiring palliation in rural and remote communities is small, the service may not function at all times but come together (pop-up) as required. Evaluation of the model in three different types of rural communities will be undertaken in three states ....This project will develop, implement and evaluate a new model of providing palliative care to individuals in rural and remote communities that will utilise existing health and community resources to provide palliative care. As the number of patients requiring palliation in rural and remote communities is small, the service may not function at all times but come together (pop-up) as required. Evaluation of the model in three different types of rural communities will be undertaken in three states (New South Wales, Queensland and West Australia). Phase I will develop a framework to assist rural communities undertake a critical palliative care service review. Phase II will implement and evaluate the model, leading to recommendations for provision of best practice palliative care more generally in rural communities.Read moreRead less
Improving The Wellbeing Of People With Advanced Cancer And Their Family Carers: An Effectiveness-implementation Trial Of An Australian Dyadic Digital Health Intervention (FOCUSau)
Funder
National Health and Medical Research Council
Funding Amount
$1,095,278.00
Summary
The end-of-life-wishes for many Australians are not upheld which has a negative impact on their quality of life as well as their family carers. However, patient and carer wellbeing is improved when they are supported together. Our research will adapt and then examine the clinical and health economic benefits of an internet-based strategy (developed in the USA) which aims to improve the quality of life of patients with advanced cancer and their family carers.
A Prospective Study Of Familial Psychological Adjustment And Service Needs On Completion Of Childhood Cancer Treatment.
Funder
National Health and Medical Research Council
Funding Amount
$307,041.00
Summary
Up to 80% of children with cancer survive into adulthood, yet little research has explored the needs of children and their families when a child completes cancer treatment. This project will describe these needs, and plot distress and resilience in families in the first 12 months after cancer treatment ends. The study will identify predictors of positive and negative outcomes after treatment and develop an intervention to reduce distress and enhance resilience in families after childhood cancer.
An Intervention To Improve The Detection And Management Of Familial Hypercholesterolaemia In Primary Care
Funder
National Health and Medical Research Council
Funding Amount
$518,588.00
Summary
Familial hypercholesterolaemia (FH) is an inherited condition affecting 45,000 Australians, with 10% diagnosed. FH has been managed mainly through hospital clinics with the majority under-treated despite effective primary care treatment being available. The application integrates specialist and primary care management with data fed into the new national FH registry. It is a partnership between 7 Universities and 5 States: service providers; community organisations; policy managers and industry.