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
Closing The Divide: Aboriginal And Torres Straight Islander People And Cancer Survivorship
Funder
National Health and Medical Research Council
Funding Amount
$701,662.00
Summary
This project will significantly contribute to Indigenous health research through addressing the current knowledge gap about the unmet support needs of Indigenous cancer patients in Queensland. This study will also investigate if the existing cancer supportive care is adequate for Indigenous patients and how an indigenious patient navigator will adress the barriers to accessing existing care. Indigenous research capacity building is a strong element of this project.
Psychological Morbidity, Unmet Needs And Patterns Of Care In Culturally And Linguistically Diverse Cancer Patients In Au
Funder
National Health and Medical Research Council
Funding Amount
$413,405.00
Summary
Australia has one of the most culturally diverse populations in the world. There is evidence that cancer patients from culturally and linguistically diverse (CALD) groups have poorer outcomes. People from CALD backgrounds may experience difficulties within the Australian health system for a variety of reasons, including langauge barriers, a lack of knowledge of the healthcare system, differing beliefs and attitudes abouit illness and treatment, religious and spiritual differences, communication ....Australia has one of the most culturally diverse populations in the world. There is evidence that cancer patients from culturally and linguistically diverse (CALD) groups have poorer outcomes. People from CALD backgrounds may experience difficulties within the Australian health system for a variety of reasons, including langauge barriers, a lack of knowledge of the healthcare system, differing beliefs and attitudes abouit illness and treatment, religious and spiritual differences, communication difficulties and social suffering. There is good evidence that English speaking cancer patients suffer high levels of anxiety and depression, and that their needs are not currently adequately met by the current system. Previous research in psycho-oncology has on the whole excluded patients from non-English speaking backgrounds due to a lack of resources and expertise to ensure scientific validity of results. This study aims to discover the prevalence of anxiety, depression, unmet needs and access to care in 1st generation Chinese, Arabic and Greek speaking cancer patients. This study will inform the development of appropriate interventions to reduce the burden of a cancer diagnosis on these groups.Read moreRead less
Reducing Cancer Patients Psychosocial Needs. A Randomised Controlled Trial
Funder
National Health and Medical Research Council
Funding Amount
$452,025.00
Summary
With 345,000 cases of cancer diagnosed each year, cancer is one of the nation's health priority areas. Although significant improvements in the early detection and treatment of cancer have increased survival, these advancements may have added to the psychological, physical and resource burdens placed on patients by increasing the time between diagnosis and definitive outcome. Addressing the physical and psychological needs of cancer patients throughout the course of their illness has become an i ....With 345,000 cases of cancer diagnosed each year, cancer is one of the nation's health priority areas. Although significant improvements in the early detection and treatment of cancer have increased survival, these advancements may have added to the psychological, physical and resource burdens placed on patients by increasing the time between diagnosis and definitive outcome. Addressing the physical and psychological needs of cancer patients throughout the course of their illness has become an important component care. A potential mechanism for reducing the psychological morbidity associated with cancer is to intervene to reduce a patient's level of unmet needs. This proposal intends to test the cost-effectiveness of an innovative intervention to reduce the level of unmet needs among colorectal patients. The study involves recruiting patients diagnosed with colorectal cancer within the past 3 months through the cancer registry and assessing their level of unmet needs at four points-at entry into the study: 6-, 12- and 18- months post diagnosis. Experimental subjects will be assigned a specially trained volunteer worker attached to the cancer council to aid the patient in identifying resources to address their unmet needs. The volunteer will act as an information resource and emotional support person. The volunteer will access information about the patients unmet needs from study questionnaires, and work with patients to devise a plan for addressing their unmet needs. The study will determine whether the level of unmet needs among cancer patients can be reduced in this manner and whether this strategy also reduces psychological distress. The proposed research is unique as it could highlight mechanisms that could be utilised by all cancer councils in Australia. The intervention has the additional benefit of being able to reach all cancer patients in a particular state regardless of their geographic location or where they receive treatment.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
Improved Support For Regional And Remote Paediatric Oncology Families: A Randomised Controlled Trial Of Videotelephony
Funder
National Health and Medical Research Council
Funding Amount
$304,843.00
Summary
Childhood cancer presents a major life stressor for the entire family. Significant changes to the everyday lives of families, practically, socially and emotionally cause major disruption. There is evidence that this disruption results in isolation and poor communication between family members, anxiety, low self-esteem and school problems for siblings and anxiety, post-traumatic stress symptoms and risk of depression for parents. Providing ongoing support to these families is an essential part of ....Childhood cancer presents a major life stressor for the entire family. Significant changes to the everyday lives of families, practically, socially and emotionally cause major disruption. There is evidence that this disruption results in isolation and poor communication between family members, anxiety, low self-esteem and school problems for siblings and anxiety, post-traumatic stress symptoms and risk of depression for parents. Providing ongoing support to these families is an essential part of care. The Royal Children's Hospital (RCH) Paediatric Oncology Service in Brisbane is the major tertiary paediatric referral centre for Queensland, northern New South Wales and the southwest Pacific. A multidisciplinary team of medical, nursing, and allied health professionals provides care and support to children with cancer, as well as their families. Each year around 100 newly diagnosed patients are cared for. Around 60% of the families cared for by the service live in regional and remote areas. There are a number of challenges which inhibit the equitable provision of specialist health services to these areas including availability of health care professionals and accessibility due to distance, time, cost and transport. For paediatric oncology families, opportunities to receive support are limited. One possible solution is the use of online support mechanisms, such as videotelephony, to facilitate the provision of much needed support to patients, parents, siblings and the family as a whole. The objective of this research is to see if videotelephony can be used to support regional and remote families of the Royal Children's Hospital Paediatric Oncology Service providing indizidualised communication, education, counselling and monitoring. This will present a new and innovative use of videophone technology as well as a new method for supporting regional and remote oncology patients and their families.Read moreRead less