Working together-apart : exploring the relationships between formal and informal care networks for people dying at home

Introduction Informal caring networks contribute significantly to end-of-life (EOL) care in the community. However, to ensure that these networks are sustainable, and unpaid carers are not exploited, primary carers need permission and practical assistance to gather networks together and negotiate the help they need. Our aim in this study was to develop an understanding of how formal and informal carers work together when care is being provided in a dying person's home. We were particularly interested in formal providers’ perceptions and knowledge of informal networks of care and in identifying barriers to the networks working together. Methods Qualitative methods, informed by an interpretive approach, were used. In February-July 2012, 10 focus groups were conducted in urban, regional, and rural Australia comprising 88 participants. Findings Our findings show that formal providers are aware, and supportive, of the vital role informal networks play in the care of the dying at home. A number of barriers to formal and informal networks working together more effectively were identified. In particular, we found that the Australian policy of health-promoting palliative is not substantially translating to practice. Conclusion Combinations of formal and informal caring networks are essential to support people and their primary carers. Formal service providers do little to establish, support, or maintain the informal networks although there is much goodwill and scope for them to do so. Further re-orientation towards a health-promoting palliative care and community capacity building approach is suggested.

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.

Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice.

BACKGROUND: Outpatient palliative care, an evolving delivery model, seeks to improve continuity of care across settings and to increase access to services in hospice and palliative medicine (HPM). It can provide a critical bridge between inpatient palliative care and hospice, filling the gap in community-based supportive care for patients with advanced life-limiting illness. Low capacities for data collection and quantitative research in HPM have impeded assessment of the impact of outpatient palliative care. APPROACH: In North Carolina, a regional database for community-based palliative care has been created through a unique partnership between a HPM organization and academic medical center. This database flexibly uses information technology to collect patient data, entered at the point of care (e.g., home, inpatient hospice, assisted living facility, nursing home). HPM physicians and nurse practitioners collect data; data are transferred to an academic site that assists with analyses and data management. Reports to community-based sites, based on data they provide, create a better understanding of local care quality. CURRENT STATUS: The data system was developed and implemented over a 2-year period, starting with one community-based HPM site and expanding to four. Data collection methods were collaboratively created and refined. The database continues to grow. Analyses presented herein examine data from one site and encompass 2572 visits from 970 new patients, characterizing the population, symptom profiles, and change in symptoms after intervention. CONCLUSION: A collaborative regional approach to HPM data can support evaluation and improvement of palliative care quality at the local, aggregated, and statewide levels.

Hospital and home : strange bedfellows or new partners?

This paper addresses the hospital/community interface as an emerging context of health care practice. As a consequence of industry reforms health service managers are looking to the community space as a location for delivery of acute health care. This focus on the community is sharpened by the promise of cost savings and enhanced by the seemingly limitless potential of biomedical technology. The paper argues that the interface of hospital and community is a conceptual space where two different types of health services meet, bringing with them different cultural practices and expectations. The ‘hospital in the home’ programs that structure health care at this interface provide the delivery of acute nursing and medical care and the accoutrements of this care in the community, the neighbourhood, the home. Consequently, the home is becoming the new site for high technology ‘hospital’ care. This domestication of illness technology is contrasted with the notion of home as a place of sanctuary, familiarity and belonging.

The interface of acute and aged care : the role of the nurse in a provincial area

Objective This study was to investigate issues that arose from pre-admission to post-discharge, for people in Toowoomba, Queensland over the age of 65 admitted to an acute facility. This paper concentrates on a significant concern that emerged from the large amount of data collected during this project, that is,the role of the nurse in the continuum of health care involving elderly people. Method The study involved a multi-site, multi-agency and multi-method (qualitative and quantitative) approach. Data was collected from regional service providers, the Department of Health and Aged Care (DHAC), the Australian Bureau of Statistics (ABS), Home and Community Care (HACC), the Aged Care Assessment Team (ACAT), elderly people who had been discharged from regional hospitals and their carers, residents of regional aged care facilities, area health professionals and elderly regional hospital inpatients. Results The data indicated that nurses in this provincial area currently play a limited role in preadmission planning, being mostly concerned with elective surgery, especially joint replacements. While nurses deliver the majority of care during hospitalisation, they do not appear to be cognizant of the needs of the elderly regarding post-acute discharge. Conclusion The recent introduction of the model of nurse case management in the acute sector appears to be a positive development that will streamline and optimise the health care of the elderly across the continuum in the Toowoomba area. The paper recommends some strategies, such as discharge liaison nurses based in Emergency Departments and the expansion of the nurse case management role, which would optimise care for the elderly person at the interface of care.

Placement Trajectory : mapping the journeys of children and young people in out-of-home care

Significant problems confront our child protection out-of-home care system including: high costs; increasing numbers of children and young people entering and remaining in care longer; high frequency of placement movement; and, negative whole-of-life outcomes for children and young people who have exited care. National policy and research agendas recognise the importance of enhancing the evidence base in out-of-home care to inform the development of policy, programs and practice, and improve longitudinal outcomes of children and young people. The authors discuss the concept of placement trajectory as a framework for research and systems analysis in the out-of-home context. While not without limitations, the concept of placement trajectory is particularly useful in understanding the factors influencing placement movement and stability. Increasing the evidence base in this area can serve to enhance improved outcomes across the lifespan for children and young people in the out-of-home care system.

Feature article coverage of Australian out-of-home care : portrayals and policy reform

Mandatory reporting is a key aspect of Australia’s approach to protecting children and is incorporated into all jurisdictions’ legislation, albeit in a variety of forms. In this article we examine all major newspaper’s coverage of mandatory reporting during an 18-month period in 2008-2009, when high-profile tragedies and inquiries occurred and significant policy and reform agendas were being debated. Mass media utilise a variety of lenses to inform and shape public responses and attitudes to reported events. We use frame analysis to identify the ways in which stories were composed and presented, and how language portrayed this contested area of policy. The results indicate that within an overall portrayal of system failure and the need for reform, the coverage placed major responsibility on child protection agencies for the over-reporting, under-reporting, and overburdened system identified, along with the failure of mandatory reporting to reduce risk. The implications for ongoing reform are explored along with the need for robust research to inform debate about the merits of mandatory reporting.

A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

The effectiveness of communication interventions in providing older people with information on access to in-home health and social care services: A systematic review protocol

The objective of this review is to locate, critically appraise and synthesize evidence on the effectiveness of communication strategies for providing older people access to information regarding in-home health and social care services. The review question is: What is the effectiveness of communication interventions in providing older people with information about in-home health and social care services?

Primary brain tumor patients’ supportive care needs and multidisciplinary rehabilitation, community and psychosocial support services: Awareness, referral and utilization

Primary brain tumors are associated with significant physical, cognitive and psychosocial changes. Although treatment guidelines recommend offering multidisciplinary rehabilitation and support services to address patients’ residual deficits, the extent to which patients access such services is unclear. This study aimed to assess patients’ supportive care needs early after diagnosis, and quantify service awareness, referral and utilization. A population-based sample of 40 adults recently diagnosed with primary brain tumors was recruited through the Queensland Cancer Registry, representing 18.9% of the eligible population of 203 patients. Patients or carer proxies completed surveys of supportive care needs at baseline (approximately three months after diagnosis) and three months later. Descriptive statistics summarized needs and service utilization, and linear regression identified predictors of service use. Unmet supportive care needs were highest at baseline for all domains, and highest for the physical and psychological needs domains at each time point. At follow-up, participants reported awareness of, referral to, and use of 32 informational, support, health professional or practical services. All or almost all participants were aware of at least one informational (100%), health professional (100%), support (97%) or practical service (94%). Participants were most commonly aware of speech therapists (97%), physiotherapists (94%) and diagnostic information from the internet (88%). Clinician referrals were most commonly made to physiotherapists (53%), speech therapists (50%) and diagnostic information booklets (44%), and accordingly, participants most commonly used physiotherapists (56%), diagnostic information booklets (47%), diagnostic information from the internet (47%), and speech therapists (43%). Comparatively low referral to and use of psychosocial services may limit patients’ abilities to cope with their condition and the changes they experience.

The information needs and information-seeking behaviours of home-care workers and clients receiving home care

Cooper, J. & Urquhart, C. (2005). The information needs and information-seeking behaviours of home-care workers and clients receiving home care. Health Information and Libraries Journal, 22(2), 107-116. Sponsorship: AHRC

HOME-BASED REHABILITATION AND ITS IMPACT ON HOSPITAL UTILIZATION

There is compelling evidence for the effectiveness of home-based occupational therapy and physiotherapy rehabilitation for community dwelling elderly who may struggle with basic activities and the functions of daily living and mobility. Nonetheless, an estimated 2% of home care’s elderly clients receive these therapies. Ontario’s home care data indicates that 78% of clients that could benefit from these specific therapies are not receiving them. The study examined a subset of elderly clients receiving home care following a hospital discharge during 2009-2010. The aim of this study was to: understand the difference between those home care clients who received occupational therapy or physiotherapy and those who did not; and determine if receiving these therapies impacted the utilization of hospital emergency departments and inpatient admissions. A retrospective cohort design and multivariate and survival analysis of hospital and home care administrative data structured the study. Results suggest that home-based rehabilitation is offered to a minority of the home care population. Distinct client characteristics and process variables significantly associated with the increased likelihood of receiving home-based occupational and physical therapies included: clients who were older, females, admitted to home care from hospital inpatient units, assessed as non-acute for clinical and service needs and required more home making support and assistance with activities of daily living. Almost one quarter of the total sample returned to hospital. Visits to emergency departments accounted for the greater part of hospital utilization and primarily for sub-acute general symptoms and signs, post-procedural complications, infections or acute episodes from chronic obstructive pulmonary disease and renal failure. Slightly over half of the clients returning to hospital did not receive home-based rehabilitation. Clients who received occupational therapy returned to the hospital sooner following their home care admission whereas clients receiving physiotherapy spent the longest time before rehospitalizing. The majority of the clients receiving occupational therapy were admitted to home care having just resolved sub-acute conditions or symptoms, many of which are known to influence functional and physical decline. Moreover, analysis of process variables indicated that the wait time for a referral to occupational therapy was two times longer compared to physiotherapy. These same clients also waited, on average, over one month before an occupational therapist’s first visit. The need to discriminate who receives home-based rehabilitation is essential to understanding how specific therapies contribute to improving systems outcomes. This study is the first examination that focuses specifically on home-based occupational therapy and physiotherapy rehabilitation and the client characteristics and process variables associated with receiving/not receiving these therapies and the impact these factors have on the time-to-rehospitalization.

Risks to home care workers: Professional perspectives

Care at home is fundamental to community care policy, but the simultaneous growth of health and safety regulation has implications for home care services because of the duty of employers towards home care workers. This grounded theory study set in Northern Ireland used data from 19 focus groups and nine semi-structured interviews with a range of health and social services professionals and managers to explore perspectives on planning long term care for older people. Home care workers faced a wide range of hazards in the homes of clients, who themselves were faced with adapting their living habits due to their changing health and care needs and 'risks.' Creative approaches were used to ensure the health and safety of home care workers and simultaneously to meet the choices of clients. Staff experienced feelings of conflict when they judged it necessary to impose their way of providing home care and thus impose their values on clients to create a safe working environment. There was variation between and within organizations in terms of the staff focus on client needs or on their employer responsibility towards home care workers. The planning of home care services must take account of both the choices of clients and the hazards facing home care staff.

A shared care model pilot for palliative home care in a rural area:Impact on symptoms, distress, and place of death

Context: Shared care models integrating family physician services with interdisciplinary palliative care specialist teams are critical to improve access to quality palliative home care and address multiple domains of end-of-life issues and needs. Objectives: To examine the impact of a shared care pilot program on the primary outcomes of symptom severity and emotional distress (patient and family separately) over time and, secondarily, the concordance between patient preferences and place of death. Methods: An inception cohort of patients (n = 95) with advanced, progressive disease, expected to die within six months, were recruited from three rural family physician group practices (21 physicians) and followed prospectively until death or pilot end. Serial measurement of symptoms, emotional distress (patient and family), and preferences for place of death was performed, with analysis of changes in distress outcomes assessed using t-tests and general linear models. Results: Symptoms trended toward improvement, with a significant reduction in anxiety from baseline to 14 days noted. Symptom and emotional distress were maintained below high severity (7-10), and a high rate of home death compared with population norms was observed. Conclusion: Future controlled studies are needed to examine outcomes for shared care models with comparison groups. Shared care models build on family physician capacity and as such are promising in the development of palliative home care programs to improve access to quality palliative home care and foster health system integration. © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.