Developing a death literacy index.

Performing end-of-life care can be a catalyst for developing a capacity called death literacy. This study aimed to develop a comprehensive and useable measure of death literacy that has the potential to assess interventions with individuals, communities, and societies. Using a mixed methods approach, a Death Literacy Index was developed from personal narratives and input from practitioners and experts. Refined on a sample of 1330 Australians using exploratory and confirmatory factor analysis and structural equation modeling, a 29-item Death Literacy Index was found to be reliable and demonstrated construct validity. Further studies are needed to test predictive validity.

Informal care networks' views of palliative care services: Help or hindrance?

Most people indicate their preference to die at home; however, in the developed world, most die in hospital. Dying at home requires complex factors to be in place in health services and informal networks of care to successfully provide support. This study examines the ways health systems, services, and individual health care professionals influence care at home at the end of life. Three principles guide the reorientation of health services and enable their transition from hindrance to help: re-evaluation of organizational values, recognition of the primacy of caring networks, and realignment of the inherent paternalism in health care provision.

Solid and liquid modernity: A comparison of the social geography of places to die in the UK and Australia.

Preferred place of care and death is a widely used quality measure for palliative and end of life care services. In this article we explore the use of Zygmunt Bauman's ideas on solid and liquid modernity to understand the complexity of the social geographical contexts of delivering and receiving care. Although solid ways of dying offer certainty and standardized care, more liquid ways allow for individualized care connected to family and communities. Understanding the complex tensions between solid and liquid aspects of palliative care may allow practitioners to help dying people to die in the ways and places they prefer.

Identification and characteristics of patients with palliative care needs in Brazilian primary care.

BACKGROUND: The Brazilian healthcare system offers universal coverage but lacks information about how patients with PC needs are serviced by its primary care program, Estratégia Saúde da Família (ESF). METHODS: Cross-sectional study in community settings. Patients in ESF program were screened using a Palliative Care Screening Tool (PCST). Included patients were assessed with Karnofsky Performance Scale (KPS), Edmonton Symptom Assessment System (ESAS) and Palliative Care Outcome Scale (POS). RESULTS: Patients with PC needs are accessing the ESF program regardless of there being no specific PC support provided. From 238 patients identified, 73 (43 women, 30 men) were identified as having a need for PC, and the mean age was 77.18 (95 % Confidence Interval = ±2,78) years, with non-malignant neurologic conditions, such as dementia and cerebrovascular diseases, being the most common (53 % of all patients). Chronic conditions (2 or more years) were found in 70 % of these patients, with 71 % scoring 50 or less points in the KPS. Overall symptom intensity was low, with the exception of some cases with moderate and high score, and POS average score was 14.16 points (minimum = 4; maximum = 28). Most patients received medication and professional support through the primary care units, but limitations of services were identified, including lack of home visits and limited multi-professional approaches. CONCLUSION: Patients with PC needs were identified in ESF program. Basic health care support is provided but there is a lack of attention to some specific needs. PC policies and professional training should be implemented to improve this area.

Establishing research in a palliative care clinical setting: perceived barriers and implemented strategies.

There are many challenges in developing research projects in research-naïve clinical settings, especially palliative care where resistance to participate in research has been identified. These challenges to the implementation of research are common in nursing practice and are associated with attitudes towards research participation, and some lack of understanding of research as a process to improve clinical practice. This is despite the professional nursing requirement to conduct research into issues that influence palliative care practice. The purpose of this paper is to describe the process of implementing a clinical research project in collaboration with the clinicians of a palliative care community team and to reflect on the strategies implemented to overcome the challenges involved. The challenges presented here demonstrate the importance of proactively implementing engagement strategies from the inception of a research project in a clinical setting.

Public Health Palliative Care and Public Palliative Care Education.

This Special Issue, "Public Health Palliative Care (PHPC) and Public Palliative Care Education (PPCE)", highlights recent advances and challenges in PHPC and PPCE [...].

Therapeutic relationships in specialist palliative care nursing practice.

There has been limited research into the scope or standards of specialist palliative care nursing practice in an Australian context. This study sought to develop a competency framework that described the core domains of specialist palliative care nursing. This article explores one key domain of specialist palliative care nursing practice - therapeutic relationships - that was identified as underpinning other domains of practice. A mixed method was used, involving a literature review, a survey including practice exemplars and an interview of specialist palliative care nurses. Seventy-four registered nurses working in designated specialist palliative care nursing roles from each Australian state and mainland territory were involved. The nurses represented metropolitan, regional, rural and remote communities, various inpatient facilities and community practice settings. Five core domains of specialist palliative care nursing practice were identified: complex supportive care, collaborative practice, leadership, improving practice and therapeutic relationships. Therapeutic relationships were identified as the central domain of specialist palliative care nursing practice to which all other domains were inextricably linked.

Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care.

Although the burden of caring is well described, the value of home as a potential place of wellbeing and support for informal caring networks when providing end-of-life care is not well recognised. Interviews and focus groups with 127 primary carers and members of informal care networks revealed their collaborative stories about caring for a dying person at home. Four themes emerged from the data: home as a place of comfort and belonging; places of social connection and collaborative caring; places of connection to nature and the non-human; places of achievement and triumph. When support is available, nurturing carer wellbeing may be best achieved at home.

Supporting Family Caregivers With Palliative Symptom Management: A Qualitative Analysis of the Provision of an Emergency Medication Kit in the Home Setting.

PURPOSE: The purpose of this qualitative analysis was to examine the experiences of family caregivers supporting a dying person in the home setting. In particular, it explores caregivers' perceptions of receiving palliative care at home when supplied with an emergency medication kit (EMK). RESULTS: Most family caregivers described preexisting medication management strategies that were unable to provide timely intervention in symptoms. The EMK was largely viewed as an effective strategy in providing timely symptom control and preventing readmission to inpatient care. Caregivers reported varying levels of confidence in the administration of medication. CONCLUSION: The provision of an EMK is an effective strategy for improving symptom control and preventing inpatient admissions of home-dwelling palliative care patients.

The Use of Emergency Medication Kits in Community Palliative Care: An Exploratory Survey of Views of Current Practice in Australian Home-Based Palliative Care Services.

Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care.

Delirium in advanced cancer: screening for the incidence on admission to an inpatient hospice unit.

BACKGROUND: Delirium is a common underdiagnosed condition in advanced cancer leading to increased distress, morbidity, and mortality. Screening improves detection but there is no consensus as to the best screening tool to use with patients with advanced cancer. OBJECTIVE: To determine the incidence of delirium in patients with advanced cancer within 72 hours of admission to an acute inpatient hospice using clinical judgement and validated screening tools. METHOD: One hundred consecutive patients with advanced cancer were invited to be screened for delirium within 72 hours of admission to an acute inpatient hospice unit. Two validated tools were used, the Delirium Rating Scale-Revised 98 (DRS-R-98) and the Confusion Assessment METHOD (CAM) shortened diagnostic algorithm. These results were compared with clinical assessment by review of medical charts. RESULTS: Of 100 consecutive admissions 51 participated and of these 22 (43.1%) screened positive for delirium with CAM and/or DRS-R-98 compared to 15 (29.4%) by clinical assessment. Eleven (21.6%) were identified as hypoactive delirium and 5 (9.8%) as subsyndromal delirium. CONCLUSION: This study confirms that delirium is a common condition in patients with advanced cancer. While there remains a lack of consensus regarding the choice of delirium screening tool this study supports the CAM as being appropriate. Further research may determine the optimal screening tool for delirium enabling the development of best practice clinical guidelines for routine medical practice.

Schematic representation of case study research designs.

AIM: The paper is a report of a study to demonstrate how the use of schematics can provide procedural clarity and promote rigour in the conduct of case study research. BACKGROUND: Case study research is a methodologically flexible approach to research design that focuses on a particular case - whether an individual, a collective or a phenomenon of interest. It is known as the 'study of the particular' for its thorough investigation of particular, real-life situations and is gaining increased attention in nursing and social research. However, the methodological flexibility it offers can leave the novice researcher uncertain of suitable procedural steps required to ensure methodological rigour. METHOD: This article provides a real example of a case study research design that utilizes schematic representation drawn from a doctoral study of the integration of health promotion principles and practices into a palliative care organization. DISCUSSION: The issues discussed are: (1) the definition and application of case study research design; (2) the application of schematics in research; (3) the procedural steps and their contribution to the maintenance of rigour; and (4) the benefits and risks of schematics in case study research. CONCLUSION: The inclusion of visual representations of design with accompanying explanatory text is recommended in reporting case study research methods.

Palliative care by nurses in rural and remote practice.

OBJECTIVE: To evaluate the experiences of a group of rural and remote nurses in providing palliative care and to discuss the implications of this evaluation for the development and implementation of professional support strategies. DESIGN: Semi-structured survey comprising 23 items measuring perceptions of the nature of rural and remote practice, the provision of palliative care in these settings and the appropriateness of various professional development strategies; as well as 12 open-ended questions to obtain qualitative descriptions relating to key concepts in rural and remote practice. SETTING: Rural and remote communities in the Southern zone of Queensland Health. SUBJECTS: Thirty-one registered and enrolled nurses, all female, who attended a two-day professional development workshop. MAIN OUTCOME MEASURES: Identification of characteristics of, barriers against and strategies to support the practice of palliative care in rural and remote communities. RESULTS: High levels of agreement with key statements relating to issues evident in contemporary literature regarding rural and remote nursing practice; qualitative descriptions show congruence with key statements. CONCLUSIONS: This evaluation demonstrated congruence between the challenges faced by this group of nurses and those reported in the literature. These nurses identified the importance of peer networking as an integral part of their work, which enhanced their potential as rural and remote palliative care providers.