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
A Randomised Controlled Trial To Improve Depression In Family Carers Through A Physical Activity Intervention
Funder
National Health and Medical Research Council
Funding Amount
$727,745.00
Summary
This RCT of a physical activity intervention for carers and care recipients aims to determine whether physical activity (designed for carer and care recipient to do together) can reduce depression in older carers. The intervention includes a physiotherapist assessment, Otago and Otago-Plus exercise programs in carer/care recipient’s home over six-months. An economic evaluation will be undertaken. If successful, the intervention could be broadly applied within the carer support service system.
Keeping my place in the community: achieving successful ageing-in-place for people with intellectual and developmental disabilities. This project, in partnership with aged care and disability agencies across two states, aims to examine ways the aged care, social and health needs of people with intellectual and developmental disabilities may be met in rural and urban settings. It will explore mechanisms that will lead to a better integration of the aged care and disability sectors.
Safety and resiliency at home: voices of children who live with fear. Finding out what can help children feel safer who are currently living in households where there is family violence will enable early intervention for better outcomes for such children. This research is significant because it will focus on targeting appropriate responses by listening to the views of children themselves and hence finding out what is really helpful for them to build resiliency. This is important to the work of a ....Safety and resiliency at home: voices of children who live with fear. Finding out what can help children feel safer who are currently living in households where there is family violence will enable early intervention for better outcomes for such children. This research is significant because it will focus on targeting appropriate responses by listening to the views of children themselves and hence finding out what is really helpful for them to build resiliency. This is important to the work of a key family welfare agency (Berry St) but it also has benefit for health and welfare workers throughout Australia. Appropriate early intervention will not only help the families concerned but will strengthen Australia's economic and social fabric, a priority goal of the national research agenda.Read moreRead less
A longitudinal study exploring women's experiences following a prenatal diagnosis of fetal abnormality. In Australia four per cent of babies are born with a congenital abnormality, many of which are detected during pregnancy. Little is known about women's experiences of a diagnosis. The aim of this study is to explore women's experiences following the diagnosis of a fetal abnormality during pregnancy, in order to develop appropriate models of supportive care.
Inclusion of young children with disabilities in mainstream early childhood services. The aim of this APAI doctoral project is to investigage the barriers to, and factors which facilitate effective inclusion of young children with disabilities in mainstream early childhood services in the Australian funding, policy and practice context. The proposed project combines quantitative and qualitative methods to examine the process and outcomes of inclusion in long day care, preschool and family day ca ....Inclusion of young children with disabilities in mainstream early childhood services. The aim of this APAI doctoral project is to investigage the barriers to, and factors which facilitate effective inclusion of young children with disabilities in mainstream early childhood services in the Australian funding, policy and practice context. The proposed project combines quantitative and qualitative methods to examine the process and outcomes of inclusion in long day care, preschool and family day care. The findings will inform policy and practice by enabling early childhood agencies to be more responsive and to better tailor their services to individual child and family needs.Read moreRead less
Towards Community Aged Care Reform: Design and evaluation of a seamless, flexible service model. The project will develop and test a seamless and flexible community aged care model that is more responsive to consumer needs. To be rolled out by Uniting Care Community Options in its community aged care operations, it is expected that the project will raise consumer satisfaction, service quality, and health outcomes. The project will also explore the potential of pooled funding focusing on its pote ....Towards Community Aged Care Reform: Design and evaluation of a seamless, flexible service model. The project will develop and test a seamless and flexible community aged care model that is more responsive to consumer needs. To be rolled out by Uniting Care Community Options in its community aged care operations, it is expected that the project will raise consumer satisfaction, service quality, and health outcomes. The project will also explore the potential of pooled funding focusing on its potential to resolve major service gaps that result from the complexity of current funding arrangements. Moreover, the project will generate new scientific evidence regarding the viability of consumer-directed community aged care in Australia and establish an ongoing research program.Read moreRead less
Moving beyond crisis management: Creating a future for people with disabilities living with ageing parents. The needs of thousands of people with disabilities being cared for by ageing parents are beyond the capacity of our existing formal mechanisms for providing care. In order to mitigate this national crisis in support, this research will establish effective, resource efficient support strategies where there are currently no plans in place for future care arrangements. By enhancing the capaci ....Moving beyond crisis management: Creating a future for people with disabilities living with ageing parents. The needs of thousands of people with disabilities being cared for by ageing parents are beyond the capacity of our existing formal mechanisms for providing care. In order to mitigate this national crisis in support, this research will establish effective, resource efficient support strategies where there are currently no plans in place for future care arrangements. By enhancing the capacity of the community to provide support the benefit of existing formal supports will be extended to address the needs of more families. This project will position Australian disability research and support at the forefront of international efforts to legitimize the claim of people with disabilities and their families on community resources.Read moreRead less
The transition of care from ageing parents: achieving flexible relationships between adults with cerebral palsy, their siblings and service providers. The Australian community faces a significant challenge in providing life-long care for people with severe disability. We will develop a model that will assist families and service providers to make a smooth, effective transition of care and/or responsibility of adults with cerebral palsy from parents to siblings. Achieving this will increase the ....The transition of care from ageing parents: achieving flexible relationships between adults with cerebral palsy, their siblings and service providers. The Australian community faces a significant challenge in providing life-long care for people with severe disability. We will develop a model that will assist families and service providers to make a smooth, effective transition of care and/or responsibility of adults with cerebral palsy from parents to siblings. Achieving this will increase the quality of life for disabled and nondisabled family members, and ensure a more efficient use of public funding. Our findings will serve as a model for managing the life-long care of people with cerebral palsy and other severe, chronic disabilities, throughout Australia and overseas.Read moreRead less
A prospective study of the mental health of grandparents providing part-time child care for their preschool age grandchildren. This project addresses national research priorities and will identify the characteristics of a high-risk subgroup of Australian grandparents for whom the childcare burden has a deleterious impact on health and well being. Results will enable development of improved approaches to education and awareness in health professionals and the lay community about this subgroup, fa ....A prospective study of the mental health of grandparents providing part-time child care for their preschool age grandchildren. This project addresses national research priorities and will identify the characteristics of a high-risk subgroup of Australian grandparents for whom the childcare burden has a deleterious impact on health and well being. Results will enable development of improved approaches to education and awareness in health professionals and the lay community about this subgroup, facilitating early identification and intervention. The study will provide evidence-based guidance to policy makers about the most appropriate support services for grandparents involved in high levels of childcare, reducing their level of stress and improving the quality of the childcare they provide.
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