Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

Quality of Life in Chinese elderly people with depression

Background Depression is the most prevalent functional mental disorder of later life. It is estimated that about 5% of the elderly population of Hong Kong are suffering from depression. Aim To investigate the self-rated quality of life of community-dwelling elderly people diagnosed with depression, and to examine the relationships between quality of life and mental, physical health, functional status and social support. Methods and results A cross-sectional descriptive survey was conducted in psychiatric outpatient clinics. A convenience sample of 80 Chinese elderly people with a diagnosis of depressive disorder was recruited. Perception of quality of life was measured by the Hong Kong Chinese World Health Organization Quality of Life Scale-Brief Version. Participants' mental status, functional abilities, physical health condition, and social support status were assessed. Sixty-one (76.3%) participants were female. They were least satisfied with meaningfulness of life, life enjoyment, concentration and thinking, energy and work capacity. Functional abilities had a positive association with participants' perceived quality of life, level of depression and number of physical health conditions had a negative association. Participants had low ratings of quality of life when compared with healthy persons and persons with chronic physical problems. Findings are discussed in light of the socio-cultural environment in Hong Kong. Conclusion Comprehensive treatment and better control of depression, including different modes of medical and psychosocial intervention, could help to improve participants' perception of quality of life. A longitudinal study with a larger sample with various levels of depression and socio-demographic characteristics is recommended. Copyright © 2006 John Wiley & Sons, Ltd.

Increased health care utilization and increased antiretroviral use in HIV-infected individuals with mental health disorders

Objectives The aims of the study were to describe the prevalence and associations of mental health disorder (MHD) among a cohort of HIV-infected patients attending the Victorian HIV/AIDS Service between 1984 and 2000, and to examine whether antiretroviral therapy use or mortality was influenced by MHD (defined as a record of service provision by psychiatric services on the Victorian Psychiatric Case Register). It was hypothesized that HIV-positive individuals with MHD would have poorer treatment outcomes, reduced responses to highly active antiretroviral therapy (HAART) and increased mortality compared with those without MHD. Methods This is a retrospective cohort of 2981 individuals (73% of the Victorian population diagnosed with HIV infection) captured on an HIV database which was electronically matched with the public Victorian Psychiatric Case Register (VPCR) (accounting for 95% of public system psychiatry service provision). The prevalence, dates and recorded specifics of mental health disorders at the time of the electronic match on 1 June 2000 are described. The association with recorded MHD, gender, age, AIDS illness, HIV exposure category, duration and type of antiviral therapy, treatment era (prior to 1986, post-1987 and pre-HAART, and post-HAART) on hospitalization and mortality at 1 September 2001 was assessed. Results Five hundred and twenty-five individuals (17.6% of the Victorian HIV-positive population) were recorded with MHD, most frequently coded as attributable to substance dependence/abuse or affective disorder. MHD was diagnosed prior to HIV in 33% and, of those diagnosed after HIV, 93.8% were recorded more than 1 year after the HIV diagnosis. Schizophrenia was recorded in 6% of the population with MHD. Hospitalizations for both psychiatric and nonpsychiatric illness were more frequent in those with MHD (relative risk 5.4; 95% confidence interval 3.7, 8.2). The total number of antiretrovirals used (median 6.4 agents vs 5.5 agents) was greater in those with MHD. When adjusted for antiretroviral treatment era, HIV exposure category, CD4 cell count and antiretroviral therapy, survival was not affected by MHD. Conclusions MHD is frequent in this population with HIV infection and is associated with increased healthcare utilization but not with reduced survival.

The National Mental Health Strategy and Geographical Access to Mental Health Services: Some empirical results

In 1992 the Australian Government adopted the National Mental Health Strategy in an attempt to improve the provision of mental health services. A component was to improve geographical access to hospital-based mental health services. This paper is concerned with determining if this objective has been achieved. Time-series data on patients (at a regional level) with mental illness in the State of Queensland are available for the years from 1968-69 to 2002-03. A change in regional classification by the Australian Bureau of Statistics complicates the analysis by precluding certain empirical tests such as converging utilisation rates by region. To overcome this problem, it was decided to apply concepts of concentration and equality that are commonly employed in industrial economics to the regional data. The empirical results show no evidence of improving regional access following the National Mental Health Strategy: in fact the statistical results show the opposite, i.e. declining regional access.

Stakeholder concerns about Australia's mental health care system

There is growing community and professional concern that the Australian mental health care system requires substantial reform. In response to these concerns, a Senate Select Committee on Mental Health has been commissioned to conduct an inquiry into the provision of mental health services. The current study involved a content analysis of 725 submissions received by the Committee, and highlighted significant areas for reform. People with mental illness face difficulties in accessing mental health care, the care they do receive is of varying quality and poorly coordinated, and necessary services from other sectors, such as housing, are lacking. These problems may be exacerbated for particular groups with complex needs or heightened levels of vulnerability. The system requires reorienting towards the consumers and carers it is designed to serve, and needs stronger governance, higher levels of accountability and improved monitoring of quality. These findings are discussed in the context of the recent acknowledgement of mental health as an issue by the Council of Australian Governments (COAG), which has called for an action plan to be prepared for its consideration by June 2006.

Introducing evidence-based family assessment and therapy in child and youth mental health services: Applying systemic principles to maintain, sustain and build capacity

The purpose of this article is to overview the context of the mental health service in which we work, and family therapy's status prior to and after the impact of changes wrought by the introduction of the National Mental Health Policy. We then explore some key issues that we think contribute to the persistence of the occlusion of family therapy in child psychiatric services; and the strategies that we developed and are continuing to develop to support change, finally, we describe the use of a family assessment instrument that we believe is central to our change strategy.

New networked technologies and carers of people with dementia: an interview study

Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.

How do older people with sight loss manage their general health? A qualitative study

Purpose: Older people with sight loss experience a number of barriers to managing their health. The purpose of this qualitative study was to explore how older people with sight loss manage their general health and explore the techniques used and strategies employed for health management. Methods: Semi-structured face-to-face interviews were conducted with 30 participants. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Results: Health management challenges experienced included: managing multiple health conditions; accessing information; engaging in health behaviours and maintaining wellbeing. Positive strategies included: joining support groups, clubs and societies; using low vision aids; seeking support from family and friends and accessing support through health and social care services. Conclusion: Healthcare professionals need to be more aware of the challenges faced by older people with sight loss. Improved promotion of group support and charity services which are best placed to share information, provide fora to learn about coping techniques and strategies, and give older people social support to prevent isolation is needed. Rehabilitation and support services and equipment can only be beneficial if patients know what is available and how to access them. Over-reliance on self-advocacy in current healthcare systems is not conducive to patient-centred care. Implications for Rehabilitation Sight loss in older people can impact on many factors including health management. This study identifies challenges to health management and highlights strategies used by older people with sight loss to manage their health. Access to support often relies on patients seeking information for themselves. However, self-advocacy is challenging due to information accessibility barriers. Informal groups and charities play an important role in educating patients about their condition and advising on available support to facilitate health management.

Medication error in mental health:implications for primary care

Medication errors are associated with significant morbidity and people with mental health problems may be particularly susceptible to medication errors due to various factors. Primary care has a key role in improving medication safety in this vulnerable population. The complexity of services, involving primary and secondary care and social services, and potential training issues may increase error rates, with physical medicines representing a particular risk. Service users may be cognitively impaired and fail to identify an error placing additional responsibilities on clinicians. The potential role of carers in error prevention and medication safety requires further elaboration. A potential lack of trust between service users and clinicians may impair honest communication about medication issues leading to errors. There is a need for detailed research within this field.

Medication -related adverse events in older people with dementia:causes and possible solutions

This submission for a PhD by previously published work is based upon six publications in peer reviewed journals, reflecting a 9-year research programme. My research has shown, in a coherent and original way, the difficulty in treating people with dementia with safe and effective medication whilst providing research-founded guidance to develop mechanisms to optimise medication choice and minimise iatrogenic events. A wide range of methods, including systematic reviews, meta-analysis, randomised controlled trials (RCTs), quantitative research and mixed methods were used to generate the data, which supported the exploration of three themes. The first theme, to understand the incidence and causes of medication errors in dementia services, identified that people with dementia may be more susceptible to medication-related iatrogenic disease partly due to inherent disease-related characteristics. One particular area of concern is the use of anti-psychotics to treat the Behavioural and Psychological Symptoms of Dementia (BPSD). The second and third themes, respectively, investigated a novel pharmacological and health services intervention to limit anti-psychotic usage. The second phase found that whilst the glutamate receptor blocker memantine showed some promise, further research was clearly required. The third phase found that anti-psychotic usage in dementia may be higher than official figures suggest and that medication review linking primary and secondary care can limit such usage. My work has been widely cited, reflecting a substantial contribution to the field, in terms of our understanding of the causes of, and possible solutions to limit, medication-related adverse events in people with dementia. More importantly, this work has already informed clinical practice, patients, carers and policy makers by its demonstrable impact on health policy. In particular my research has identified key lines of enquiry for future work and for the development of my own personal research programme to reduce the risk associated with medication in this vulnerable population.

Training staff in voluntary organisations:challenges in providing a service to adults with learning disabilities

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