Dementia: what care do patients and carers need in the last year of life and time surrounding death? an exploratory qualitative study

Background: The incidence and prevalence of dementia is increasing in the UK as the aged population increases. It is currently high on the national agenda. The National Dementia Strategy for England and End of Life Strategy advocate both living and dying well with dementia. Recent media attention has resulted in greater public interest in what can be a debilitating, unpredictable condition affecting those around the person with dementia and not the sufferer alone. This is at a huge cost to the economy and predicted to increase. Research suggests this group receive different levels of care and treatment at end of life than those cognitively intact experiencing different life limiting illnesses. This study sought to explore needs of people with dementia and their informal carers in the last year of life and surrounding death. Aims: The main aim of this study was to explore experiences of this group identifying their underlying needs at this time. Methods: Qualitative methodology was used to explore these differences. Interviews informed by narrative were conducted with bereaved informal carers of people with dementia on one occasion to access their experiences and views. Field notes were kept by the researcher to supplement interpretation and analysis. Analysis: Interviews were recorded digitally and transcribed fully by the researcher. Analysis was informed by the Grounded Theory approach. Results: A total of 41 participants were interviewed. These were mainly siblings or spouse and came from a range of backgrounds ranging from 21-86years in age. Most participants were female (31), death occurred in various 24 hour care environments including district general hospitals, nursing and residential care homes (specialist EMI and non-specialist). A small number (4) experienced death within the family home. Five themes were derived from within the data, carers as experts; kindness; humanity and compassion in care; the hard work of caring; living and dying with dementia in the face of uncertainty and communicating in a world of chaos and unpredictability. The latter being the underpinning theme in the data. Informal carers want to collaborate and be included in all aspects of palliative and end of life care for their loved ones. Issues separating dementia from other life limiting illnesses and provision of palliative and end of life care are: disease course, uncertainty and unpredictability over long periods of time and the role of informal carers as experts with a group whose communication skills are compromised. Discussion: If palliative and end of life care for this group is to mirror that currently provided for other terminal illnesses, the development of knowledge, confidence and communication skills amongst the workforce is crucial. In order to be successful, multi agency working, flexible and creative ways of delivering palliative and end of life care for this group are essential

Optimising reproductive and child health outcomes by building evidence-based research and practice in South East Asia (SEA-ORCHID): study protocol

Background Disorders related to pregnancy and childbirth are a major health issue in South East Asia. They represent one of the biggest health risk differentials between the developed and developing world. Our broad research question is: Can the health of mothers and babies in Thailand, Indonesia, the Philippines and Malaysia be improved by increasing the local capacity for the synthesis of research, implementation of effective interventions, and identification of gaps in knowledge needing further research? Methods/Design The project is a before-after study which planned to benefit from and extend existing regional and international networks. Over five years the project was designed to comprise five phases; pre-study, pre-intervention, intervention, outcome assessment and reporting/dissemination. The study was proposed to be conducted across seven project nodes: four in South East Asia and three in Australia. Each South East Asian study node was planned to be established within an existing department of obstetrics and gynaecology or neonatology and was intended to form the project coordinating centre and focus for evidence-based practice activities within that region. Nine hospitals in South East Asia planned to participate, representing a range of clinical settings. The three project nodes in Australia were intended to provide project support. The intervention was planned to consist of capacity-strengthening activities targeted at three groups: generators of evidence, users of evidence and teachers of evidence. The primary outcome was established as changes in adherence to recommended clinical practices from baseline to completion of the project and impact on health outcomes. Discussion The SEA-ORCHID project was intended to improve care during pregnancy and the perinatal period of mothers and their babies in South East Asia. The possible benefits extend beyond this however, as at the end of this project there is hoped to be an existing network of South East Asian researchers and health care providers with the capacity to generalise this model to other health priority areas. It is anticipated that this project facilitate ongoing development of evidence-based practice and policy in South East Asia through attracting long-term funding, expansion into other hospitals and community-based care and the establishment of nodes in other countries.David J Henderson-Smart, Pisake Lumbiganon, Mario R Festin, Jacqueline J Ho, Hakimi Mohammad, Steve J McDonald, Sally Green and Caroline A Crowther for the SEA-ORCHID Study Grou

Survey of knowledge and perception on the access to evidence-based practice and clinical practice change among maternal and infant health practitioners in South East Asia

Background Evidence-based practice (EBP) can provide appropriate care for women and their babies; however implementation of EBP requires health professionals to have access to knowledge, the ability to interpret health care information and then strategies to apply care. The aim of this survey was to assess current knowledge of evidence-based practice, information seeking practices, perceptions and potential enablers and barriers to clinical practice change among maternal and infant health practitioners in South East Asia. Methods Questionnaires about IT access for health information and evidence-based practice were administered during August to December 2005 to health care professionals working at the nine hospitals participating in the South East Asia Optimising Reproductive and Child Health in Developing countries (SEA-ORCHID) project in Indonesia, Malaysia, Thailand and The Philippines. Results The survey was completed by 660 staff from six health professional groups. Overall, easy IT access for health care information was available to 46% of participants. However, over a fifth reported no IT access was available and over half of nurses and midwives never used IT health information. Evidence-based practice had been heard of by 58% but the majority did not understand the concept. The most frequent sites accessed were Google and PubMed. The Cochrane Library had been heard of by 47% of whom 51% had access although the majority did not use it or used it less than monthly. Only 27% had heard of the WHO Reproductive Health Library and 35% had been involved in a clinical practice change and were able to identify enablers and barriers to change. Only a third of participants had been actively involved in practice change with wide variation between the countries. Willingness to participate in professional development workshops on evidence-based practice was high. Conclusion This survey has identified the need to improve IT access to health care information and health professionals' knowledge of evidence-based health care to assist in employing evidence base practice effectively.Ruth Martis, Jacqueline J Ho and Caroline A Crowther for The SEA-ORCHID Study Grou

HYDROLOGICAL STUDIES OF CHANNEL MODIFICATIONS AT CAUVERY RIVER, INDIA.

研究概要:The study deals with hydrological aspects of palaeo-courses of Cauvery River, India resulted from channel modification. Detailed studies have been conducted in two sectors located in the river basin in areas around Talakad and Manchanahalli, Palaeochannels have been demarcated and delineated by using remote sensing technique. Later the hydrological parameters were estimated for analyzing the hydrological signatures of palaeochannels resulted from channel modification. It has been observed that these parameters are unique in areas, which are located at or near palaeochannels

Building capacity for evidence generation, synthesis and implementation to improve the care of mothers and babies in South East Asia: methods and design of the SEA-ORCHID Project using a logical framework approach

Background: Rates of maternal and perinatal mortality remain high in developing countries despite the existence of effective interventions. Efforts to strengthen evidence-based approaches to improve health in these settings are partly hindered by restricted access to the best available evidence, limited training in evidence-based practice and concerns about the relevance of existing evidence. South East Asia - Optimising Reproductive and Child Health in Developing Countries (SEA-ORCHID) was a five-year project that aimed to determine whether a multifaceted intervention designed to strengthen the capacity for research synthesis, evidence-based care and knowledge implementation improved clinical practice and led to better health outcomes for mothers and babies. This paper describes the development and design of the SEA-ORCHID intervention plan using a logical framework approach. Methods: SEA-ORCHID used a before-and-after design to evaluate the impact of a multifaceted tailored intervention at nine sites across Thailand, Malaysia, Philippines and Indonesia, supported by three centres in Australia. We used a logical framework approach to systematically prepare and summarise the project plan in a clear and logical way. The development and design of the SEA-ORCHID project was based around the three components of a logical framework (problem analysis, project plan and evaluation strategy). Results: The SEA-ORCHID logical framework defined the project's goal and purpose (To improve the health of mothers and babies in South East Asia and To improve clinical practice in reproductive health in South East Asia), and outlined a series of project objectives and activities designed to achieve these. The logical framework also established outcome and process measures appropriate to each level of the project plan, and guided project work in each of the participating countries and hospitals. Conclusions: Development of a logical framework in the SEA-ORCHID project enabled a reasoned, logical approach to the project design that ensured the project activities would achieve the desired outcomes and that the evaluation plan would assess both the process and outcome of the project. The logical framework was also valuable over the course of the project to facilitate communication, assess progress and build a shared understanding of the project activities, purpose and goal.Steve McDonald, Tari Turner, Catherine Chamberlain, Pisake Lumbiganon, Jadsada Thinkhamrop, Mario R Festin, Jacqueline J Ho, Hakimi Mohammad, David J Henderson-Smart, Jacki Short, Caroline A Crowther, Ruth Martis, Sally Green for the SEA-ORCHID Study Grou

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial

Background Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy