Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage : a national study using spatial analysis

Background: A range of health outcomes at a population level are related to differences in levels of social disadvantage. Understanding the impact of any such differences in palliative care is important. The aim of this study was to assess, by level of socio-economic disadvantage, referral patterns to specialist palliative care and proximity to inpatient services. Methods: All inpatient and community palliative care services nationally were geocoded (using postcode) to one nationally standardised measure of socio-economic deprivation – Socio-Economic Index for Areas (SEIFA; 2006 census data). Referral to palliative care services and characteristics of referrals were described through data collected routinely at clinical encounters. Inpatient location was measured from each person’s home postcode, and stratified by socio-economic disadvantage. Results: This study covered July – December 2009 with data from 10,064 patients. People from the highest SEIFA group (least disadvantaged) were significantly less likely to be referred to a specialist palliative care service, likely to be referred closer to death and to have more episodes of inpatient care for longer time. Physical proximity of a person’s home to inpatient care showed a gradient with increasing distance by decreasing levels of socio-economic advantage. Conclusion: These data suggest that a simple relationship of low socioeconomic status and poor access to a referral-based specialty such as palliative care does not exist. Different patterns of referral and hence different patterns of care emerge.

Whose business is dying? Death, the home and palliative care

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.

Hospital in the Nursing Home program reduces emergency department presentations and hospital admissions from residential aged care facilities in Queensland, Australia: A quasi-experimental study

Background There has been considerable publicity regarding population ageing and hospital emergency department (ED) overcrowding. Our study aims to investigate impact of one intervention piloted in Queensland Australia, the Hospital in the Nursing Home (HiNH) program, on reducing ED and hospital attendances from residential aged care facilities (RACFs). Methods A quasi-experimental study was conducted at an intervention hospital undertaking the program and a control hospital with normal practice. Routine Queensland health information system data were extracted for analysis. Results Significant reductions in the number of ED presentations per 1000 RACF beds (rate ratio (95 % CI): 0.78 (0.67–0.92); p = 0.002), number of hospital admissions per 1000 RACF beds (0.62 (0.50–0.76); p < 0.0001), and number of hospital admissions per 100 ED presentations (0.61 (0.43–0.85); p = 0.004) were noticed in the experimental hospital after the intervention; while there were no significant differences between intervention and control hospitals before the intervention. Pre-test and post-test comparison in the intervention hospital also presented significant decreases in ED presentation rate (0.75 (0.65–0.86); p < 0.0001) and hospital admission rate per RACF bed (0.66 (0.54–0.79); p < 0.0001), and a non-significant reduction in hospital admission rate per ED presentation (0.82 (0.61–1.11); p = 0.196). Conclusions Hospital in the Nursing Home program could be effective in reducing ED presentations and hospital admissions from RACF residents. Implementation of the program across a variety of settings is preferred to fully assess the ongoing benefits for patients and any possible cost-savings.

Study protocol: home-based telehealth stroke care: a randomized trial for veterans.

BACKGROUND: Stroke is one of the most disabling and costly impairments of adulthood in the United States. Stroke patients clearly benefit from intensive inpatient care, but due to the high cost, there is considerable interest in implementing interventions to reduce hospital lengths of stay. Early discharge rehabilitation programs require coordinated, well-organized home-based rehabilitation, yet lack of sufficient information about the home setting impedes successful rehabilitation. This trial examines a multifaceted telerehabilitation (TR) intervention that uses telehealth technology to simultaneously evaluate the home environment, assess the patient's mobility skills, initiate rehabilitative treatment, prescribe exercises tailored for stroke patients and provide periodic goal oriented reassessment, feedback and encouragement. METHODS: We describe an ongoing Phase II, 2-arm, 3-site randomized controlled trial (RCT) that determines primarily the effect of TR on physical function and secondarily the effect on disability, falls-related self-efficacy, and patient satisfaction. Fifty participants with a diagnosis of ischemic or hemorrhagic stroke will be randomly assigned to one of two groups: (a) TR; or (b) Usual Care. The TR intervention uses a combination of three videotaped visits and five telephone calls, an in-home messaging device, and additional telephonic contact as needed over a 3-month study period, to provide a progressive rehabilitative intervention with a treatment goal of safe functional mobility of the individual within an accessible home environment. Dependent variables will be measured at baseline, 3-, and 6-months and analyzed with a linear mixed-effects model across all time points. DISCUSSION: For patients recovering from stroke, the use of TR to provide home assessments and follow-up training in prescribed equipment has the potential to effectively supplement existing home health services, assist transition to home and increase efficiency. This may be particularly relevant when patients live in remote locations, as is the case for many veterans. TRIAL REGISTRATION: Clinical Trials.gov Identifier: NCT00384748.

Teaching family carers about home based palliative care: Final results from a group education program

Without the considerable support provided by family carers, many patients receiving palliative care would be unable to remain at home. However, family carers typically lack the required information and skills to prepare them for such a role. Pilot work has demonstrated that group education programs for family carers can be readily developed; they are feasible, accessible, and useful. This project sought to build on our pilot research to further examine the effectiveness of a group education program by evaluating the outcomes with a larger number of participants. The program aimed to prepare primary family carers for the role of supporting a relative with advanced, noncurative cancer at home. The psycho-educational program consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria, Australia. The following dependent variables were measured at three time points: carer competence, preparedness, rewards, and information needs. The three time points were: commencement of the program (Time 1), upon completion (Time 2), and two weeks later (Time 3). A total of 156 participants (including the pilot phase) completed Time 1 questionnaires and 96 completed all three time periods (62%). Between Time 1 and Time 2, the intervention had a statistically significant positive effect on preparedness, competence, rewards, and having informational needs met. Outcomes were maintained at Time 3. There was no difference in the effectiveness of the intervention for participants in regional areas compared to participants in metropolitan areas.

This study demonstrated that a group education program to prepare family carers for the role of supporting a dying relative at home was effective. Implications for further research and practice are outlined.

Older adults awareness of community health and support services for dementia care

The article examines where older adults seek help in caring for a parent with dementia and the factors associated with their identification of community health and support services as sources of assistance. The authors conducted telephone interviews, using random digit dialing, of 1,152 adults aged 50 and over in the city of Hamilton. Respondents received a vignette that raised issues related to parental dementia. In identifying support sources, over 37 per cent of respondents identified their physician, 33 per cent identified informal support such as family and neighbors, and 31 per cent identified home health services. Only 18 per cent identified community support services. Female participants having higher levels of education were more likely to identify their physician as a source of support. Knowing where to find information about community support services was associated with an increased likelihood of mentioning physicians and home health services as sources of assistance. © 2009 Copyright Canadian Association on Gerontology.

The palliative care education needs of nursing home staff

Background: Palliative care is delivered in a number of settings, including nursing homes, where staff often have limited training in palliative care. Aim: We explored the level of palliative care knowledge among qualified staff delivering end-of-life care in nursing home settings, to inform the development of an appropriate education and training programme. Design: An audit of the educational needs assessment was performed using an anonymous postal questionnaire sent to 528 qualified nursing staff within 48 nursing homes. Findings: In total, 227 questionnaires were returned giving a response rate of 43%. Results indicated that less than half the sample had obtained formal training in the area of pain assessment and management and less than a quarter had obtained training in non-malignant conditions. Registered nurses in this study reported a lack of awareness of palliative care principles or national guidelines. Conclusion: Qualified nursing home staff agree that palliative care is a valuable model for care in their setting. There are clear opportunities for improvement in nursing home care, based on education and training in palliative care. Results also support the need for enhanced liaison between nursing homes and specialist palliative care services. © 2006 Elsevier Ltd. All rights reserved.

Mental Health Services for Nursing Home Residents: What Will It Cost?

The Nursing Home Reform Act of 1987 requires nursing homes to provide basic mental health services for all residents and to give active mental health treatment, a set of specialized mental health services, to those residents who are admitted with a serious mental illness. This article examines the potential size of the nursing home population who will require mental health services, its demographic composition, and the facilities in which these individuals reside using the Institutional Population Component of the National Medical Expenditure Survey. Estimates of the potential costs of providing monthly psychotherapy and pharmacological management to this population in nursing homes indicate that the mandate will have significant financial effects on nursing facilities. Conclusions about how the requirements for maintaining the mental and psychosocial well-being of nursing home residents may affect the future of nursing home care and mental health care are considered.

iCarer Project: Intelligent Care Guidance and Learning Services Platform for Informal Carers of the Elderly

The increasing ageing population is demanding new care approaches to maintain the quality of life of elderly people. Informal carers are becoming crucial agents in the care and support of elderly people, which can lead to those carers suffering from additional stress due to competing priorities with employment or due to lack of knowledge about elderly people?s care needs. Thus, support and stress relief in carers should be a key issue in the home-care process of these older adults. Considering this context, this work presents the iCarer project aimed at developing a personalized and adaptive platform to offer informal carers support by means of monitoring their activities of daily care and psychological state, as well as providing an orientation to help them improve the care provided. Additionally, iCarer will provide e-Learning services and an informal carers learning network. As a result, carers will be able to expand their knowledge, supported by the experience provided by expert counsellors and fellow carers. Additionally, the coordination between formal and informal carers will be improved, offering the informal carers flexibility to organize and combine their assistance and social activities.

Using videotelephony to support paediatric oncology-related palliative care in the home : from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment), designed to investigate the use of videotelephony with families receiving palliative care from a tertiary paediatric oncology service in Brisbane, Australia. To investigate whether providing videotelephone-based support was acceptable to these families, a 12-month non-randomised acceptability trial was completed. Seventeen palliative care families were offered access to a videotelephone support service in addition to the 24 hours ‘on-call’ service already offered. A 92% participation rate in this study provided some reassurance that the use of videotelephones themselves was not a factor in poor RCT participation rates. The next phase of research is to investigate the integration of videotelephone-based support from the time of diagnosis, through outpatient care and support, and for palliative care rather than for palliative care in isolation

Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

'Being-in-the-world-of-care' : the lived experiences of older people receiving community aged care packages in Queensland

It has been recognised in current literature that, in general, Australia’s population is ageing and that older people are increasingly choosing to continue to live in the community in their own homes for as long as possible. Such factors of social change are expected to lead to larger numbers of older people requiring community care services for longer periods. Despite this, there is little information available in the literature on the perceptions and experiences of older people regarding community-based care and support. This study explores the lived experience of a small group of older people living in South East Queensland who were receiving a level of care consistent with the Community Aged Care Package (CACP). It also sought to examine the impact and meaning of that care on the older person’s overall lifestyle, autonomy, and personal satisfaction. In-depth interviews were undertaken with these older people, and were analysed using Heidegger’s interpretive hermeneutical phenomenological approach. Shared narratives were then explored using Ricoeur’s narrative analysis framework. In order to sensitise the researcher to the unconscious or symbolic aspects of the care experience, Wolfensberger’s social role valorization theory (SRV) was also utilised during a third phase of analysis. Methodological rigour was strengthened within this study through the use of reflexivity and an in-depth member check discussion that was conducted with each participant. The interviews revealed there were significant differences in expectations, understanding, and perceptions between older people and their carers or service providers. The older person perceived care primarily in relational terms, and clearly preferred active participation in their care and a consistent relationship with a primary carer. Older people also sought to maintain their sense of autonomy, lifestyle, home environment, routines, and relationships, as closely as possible to those that existed prior to their requiring assistance. However, these expectations were not always supported by the care model. On the whole, service providers did not always understand what older people perceived was important within the care context. Carers seldom looked beyond the provision of assistance with specific daily tasks to consider the real impact of care on the older person. The study identified that older people reported a range of experiences when receiving care in their own homes. While some developed healthy and supportive connections with their carers, others experienced ageism, abuse, and exploitation. Unsatisfactory interactions at times resulted in a loss, to varying degrees, of their independence, their possessions, and their connectedness with others. There is therefore a need for service providers to pay more attention to the perceptions and self-perceived needs of older people, to avoid unintended or unnecessary negative impacts occurring within care provision. The study provides valuable information regarding the older person’s experience that will assist in supporting the further development and improvement of this model of care. It is proposed that these insights will enable CACPs to cater more closely to the actual needs and preferences of older people, and to avoid causing preventable harm to care recipients.

Mapping Services to Support a Patient's Journey through Evidence-Based Care Pathways After a Cardiac Event

Background: There are inequalities in geographical access and delivery of health care services in Australia, particularly for cardiovascular disease (CVD), Australia's major cause of death. Analyses and models that can inform and positively influence strategies to augment services and preventative measures are needed. The Cardiac-ARIA project is using geographical spatial technology (GIS) to develop a national index for each of Australia's 13,000 population centres. The index will describe the spatial distribution of CVD health care services available to support populations at risk, in a timely manner, after a major cardiac event. Methods: In the initial phase of the project, an expert panel of cardiologists and an emergency physician have identified key elements of national and international guidelines for management of acute coronary syndromes, cardiac arrest, life-threatening arrhythmias and acute heart failure, from the time of onset (potentially dial 000) to return from the hospital to the community (cardiac rehabilitation). Results: A systematic search has been undertaken to identify the geographical location of, and type of, cardiac services currently available. This has enabled derivation of a master dataset of necessary services, e.g. telephone networks, ambulance, RFDS, helicopter retrieval services, road networks, hospitals, general practitioners, medical community centres, pathology services, CCUs, catheterisation laboratories, cardio-thoracic surgery units and cardiac rehabilitation services. Conclusion: This unique and innovative project has the potential to deliver a powerful tool to both highlight and combat the burden of disease of CVD in urban and regional Australia.

Transition to day care for older people in Taiwan : a grounded theory study

Adult day care centres provide a means whereby frail or disabled older people can remain living at home particularly when their family care-givers engage in waged work. In Taiwan, adult day care services appear to meet the cultural needs of both older people and their families for whom filial care is vital. Little research attention has been paid to the use of day care services in Taiwan, the uptake rate of which is low. This grounded theory study explored the ways in which older people and family care-givers construct meanings around the use of day care services in Taiwan. Forty-four semi-structured interviews were undertaken with older people, care-givers and day care centre managers. The findings from grounded theory data analysis bring focus to the assumptions and structures that underpin the process of transition to day care services. A key feature of this process is the reconstruction of personal identity as both the older people and family care-givers work to make sense of the relationship between the self and a changing social structure. Reconstructing identity in a shifting world is the core category of the study and reflects a process of reframing whereby older people came to new definitions of social responsibility and independence within the context of the day care centre. Similarly, the family care-givers actively reformulated the concept of filial piety as they interacted with and interpreted the changes in economic and social conditions in Taiwan.