Development And Psychometric Evaluation Of 2 Measures Of Perceived Needs: 1 For Young Persons With Cancer; 1 For Parents
Funder
National Health and Medical Research Council
Funding Amount
$253,500.00
Summary
It is increasingly acknowledged that there is a need to develop measures which allow patients to reflect their needs, so that the health-care system can respond effectively. Cancer patients represent some of the more poignant and in need groups. Of this patient cohort, young persons with cancer represent a group with potentially, and understandably, a wide range of high unmet needs. The stress and demands imposed upon parents who have children with cancer is acknowledged as being considerable. D ....It is increasingly acknowledged that there is a need to develop measures which allow patients to reflect their needs, so that the health-care system can respond effectively. Cancer patients represent some of the more poignant and in need groups. Of this patient cohort, young persons with cancer represent a group with potentially, and understandably, a wide range of high unmet needs. The stress and demands imposed upon parents who have children with cancer is acknowledged as being considerable. Despite the development of measures to identify unmet needs of various cancer patients including advanced, incurable cancer, breast cancer and cervical cancer, there has been no work to date on developing an accurate measure of unmet needs among parents of young persons who have cancer, as well as the unmet needs of young persons themselves who have cancer. This study will develop such a measure, as a first step in identifying the most cost-effective ways to address the unmet needs of children with cancer and their families. These measures will have a clinical application, in enabling accurate estimates of the prevalence of unmet needs, and a research application, in providing reliable and valid outcome measures for evaluating the effectiveness of interventions.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