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
Reduced HIV Infection And Increased Survival Among HIV-exposed Infants Using Two Newly Developed Point-of-care Tests In Papua New Guinea And China.
Funder
National Health and Medical Research Council
Funding Amount
$952,841.00
Summary
HIV contributes significantly to maternal and infant deaths, largely due to limited access to effective antiretroviral drugs among HIV-infected expectant mothers and their HIV-infected infants. Decisions on what and when to start treatment currently depends on sophisticated laboratory tests, unavailable to many. This research is a world-first intervention study to assess the effectiveness and impact of two newly developed and unique low-cost rapid point-of-care tests.
Advance Care Planning In Incurable Cancer Patients With Disease Progression On First Line Chemotherapy: A Randomised Trial.
Funder
National Health and Medical Research Council
Funding Amount
$745,946.00
Summary
Advance care planning informs patient and care giver about end of life care options and assists patients to reflect on their goals, values and beliefs and to discuss and document their future choices. This randomised trial evaluates advance care planning in incurable cancer patients. The primary endpoint is the family member's view of the quality of death and compliance with known end of life wishes of the deceased patient. The costs of subsequent care are also recorded.
From patient-centred to family-centred care: A new conceptual framework and doctor training to involve family caregivers in cancer consultations. Cancer has an enormous impact on patients and families. Family caregivers play a critical role in supporting patients and participating in treatment decision-making. Yet there are no guidelines or training to optimise family caregivers' involvement in health care, and current practice is poor. This project aims to develop the first Conceptual Framewor ....From patient-centred to family-centred care: A new conceptual framework and doctor training to involve family caregivers in cancer consultations. Cancer has an enormous impact on patients and families. Family caregivers play a critical role in supporting patients and participating in treatment decision-making. Yet there are no guidelines or training to optimise family caregivers' involvement in health care, and current practice is poor. This project aims to develop the first Conceptual Framework and Strategies Document for involving family caregivers in communication and decision-making within cancer consultations and to evaluate the feasibility, acceptability and potential efficacy of a novel doctor-patient-family (triadic) intervention for oncologists. By extending patient-centred to family-centred care, this project may transform the field of clinical communication.Read moreRead less