End-of-life care in the intensive care unit : a systematic review of qualitative studies investigating the experiences and perceptions of the patient's family

Review question/objective The review objective is to synthesise the best available evidence on experiences and perceptions of family members of intensive care unit patients on the adequacy of end-of-life care, where life-support modalities have been withheld or withdrawn. Inclusion criteria Types of participants This review will consider studies that report on the experiences and perceptions of patients’ families on EOLC in the ICU, where life-support modalities have been withheld or withdrawn. The family is defined as “those who are closest to the patient... the family may include the biological family, family by acquisition, and the family of choice and friends”. Phenomena of interest The phenomena of interest for this review are the patients’ families experiences, perceptions or views on the adequacy of EOLC delivered in the ICU, where life-support modalities were withheld or withdrawn. These experiences may refer to the following views on domains of care considered important at the end-of-life in the ICU, which have been described already in the existing literature: timely, consistent, and compassionate communication, clinician availability, clinical decision making based on patients’ preferences, goals and values, physical care implemented to maintain patient comfort, holistic interdisciplinary care and bereavement care for families of patients who died.

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.

"But we’re already doing it!" Examining conceptual blurring between health promotion and palliative care

Over the past decade, an increasing number of palliative care service providers have attempted to integrate health promotion into their organisational practice. A key factor in the success of this endeavour has been the recognition by these providers of the conceptual ‘fit’ between two seemingly disparate approaches to health care. When informed of the elements of health promotion, palliative care professionals have expressed their recognition in their declaration: ‘But we’re already doing it!’ (Rosenberg 2007). Yet it appears that this association between the two suggests that health promotion in palliative care organisations is being understood in poorly defined ways. ‘Health promotion’ can be incorrectly assumed to be synonymous with ‘health education’; ‘death education’ can be understood to be synonymous with providing information about palliative care resources. Whilst these activities may be worthwhile within themselves, their presence in the activities of an organisation does not constitute the practice of health promoting palliative care (HPPC) (Kellehear 1999)...

Making context work in primary health care

Health care in the community setting is one of the more challenging contexts for evidence-based practice. Community-based care comprises more than simply transplanting hospital care into people’s homes; in addition to the provision of supportive services, it also takes a range of approaches to health care practice that promotes optimal health and builds the capacity of individuals and communities to respond to their health needs. Primary health care is comprised of the diverse activities that build sustainable community capacity to achieve health and well-being throughout all of life’s stages. The expansive nature of primary health care means that a map for practice is not feasible; however a framework which can be adapted to suit the variety of situations and practice settings can be identified. The focus of this chapter is to broadly define and explore the principles of primary health care and consider the contexts of primary health care in relation to evidence-based practice.

The professional identity of child care practitioners : self-authorship as a theoretical framework

This research contributes new understandings about the development of the professional identity of child care practitioners and how professional identity changes during the transition from student to practitioner. Self-authorship theory was used as the framework to investigate the development of professional identity through exploration of beliefs about practice, sense of self, and capabilities for collaborative engagement. Students recruited for this research were completing their qualifications to work with young children in child care settings. Data from initial and follow-up interviews were analysed to understand change over time in professional identity. Findings indicated a need for training institutions and workplaces to move beyond competency-based training approaches to include more critically reflective learning opportunities. Such a focus on critical reflection has implications for improving the skills, status, and recognition of child care practitioners as educators.

School nurses and partnerships for health education : team teaching in the secondary school curricula

The purpose of this research is to examine School Based Youth Health Nurses experience of partnerships for health education and team teaching. The School Based Youth Health Nurse Program is a contemporary model of school nursing in Queensland, Australia. The role of the School Based Youth Health Nurse consists of individual health consultations and health promotion. This research analyses a subset of qualitative data collected for a larger project about the experience of school based youth health nursing. The Health Promoting Schools model is used as a deductive framework. The findings reveal five subthemes across the three areas of the Health Promoting Schools approach. There are two subthemes within the curriculum, teaching and learning area; We were on the same page so to speak and I can go and do my reports or whatever. There are two sub-themes within the partnerships and services area; I had a beautiful science teacher who was just delightful and really just wanted to do things in partnerships and It’s all airy fairy arty farty stuff that’s not important. There is one theme in the school organisation, ethos and environment area; I just don’t know how well the top of these organisations communicate with the bottom of those organisations. Successful partnerships for health education and team teaching between school nurses and teachers are based on personal relationships based on rapport which lead to trust and reciprocity. Partnerships are limited by teachers understanding of the role of the school nurse and engagement with school nurses in the classroom. Administrative support from the top down is fundamental.

Palliative care provision for patients with a haematological malignancy : can we do more?

This editorial depicts the current challenges in palliative care provision for patients with a haematological malignancy and the contribution of cancer nurses. There have been significant advancements in the care of patients with a hematological malignancy over the past three or more decades1. Despite this, there still exists a significant mortality risk in curative treatment and many patients with a hematological malignancy will die from their disease1. A growing body of research indicates patients with a hematological malignancy do not receive best practice palliative and end-of-life care2. Shortfalls in care include poor referral patterns to specialist palliative care services, lack of honest discussions regarding death and dying, inadequate spiritual care for patients and families, patients frequently dying in the acute care setting and high levels of patient and family distress2. There have been a number of efforts in the United Kingdom, United States of America, Sweden, and Australia demonstrating palliative and hematology care can co-exist, exemplified through clinical case studies and innovative models of care2. However, deficits in the provision of palliative care for patients with a hematological malignancy persist as evident in the international literature2. Addressing this issue requires research exploring new aspects of a complex scenario; here we suggest priority areas of research...

How stable is the well-being of Australian mothers who care for young children with special health care needs?

Ninety-seven percent of children who have special health care needs are cared for by their mothers. These mothers cite that their informal care work can be intrinsically rewarding, however, the role is not without substantial difficulties and consequences. We investigated differences in the health and well-being of mothers whose young children do and do not have special health care needs. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. This study employs a matched-case control methodology to compare the experiences of a group of 292 mothers whose children are identified as having long term special health care needs to those mothers whose children are typically developing at two time points; Wave 1 (2004) and Wave 3 (2008). The findings support previous research that mothers of children with special health care needs have poorer general health and mental health than mothers whose children do not have special needs. Mothers of children with special health care needs also perceived life as more difficult. Longitudinally, this study also shows that maternal well-being remains relatively stable during the years when children are transitioning to formal schooling. Implications for policy makers, practitioners and early childhood professionals are discussed.

The Australian Nonprofit Sector Legal and Accounting Almanac 2013

INTRODUCTION CASES For a number of years, Professor Myles McGregor-Lowndes, Frances Hannah and Anne Overell have compiled one to two page summaries of cases involving nonprofit organisations and published them on The Australian Centre for Philanthropy and Nonprofit Studies, Developing Your Organisation (DYO) website.1 You can be alerted of new case summaries as they are posted to the DYO website by subscribing to the ACPNS RSS feed or the ACPNS twitter service.2 There were some very significant cases during 2013, such as Commissioner of Taxation v Cancer & Bowel Research Association (see case notes 2.8.2 and 2.8.11), The Hunger Project case which is under appeal, but could change the face of PBI jurisprudence (see case note 2.8.7) while Home Health Pty Ltd retained the PBI status quo but might have been different if appealed (see case note 2.8.8). For sheer interest there is nothing better in my 30 odd years of reading tax and charity judgements than case involving The Study and Prevention of Psychological Diseases Foundation Incorporated (see case note 2.1.1). It even rivals some of the more bizarre cases from the US jurisdiction of which St Joseph Abbey v Castille (case note 2.10.9) is certainly ‘dead centre’. A set of cases which stand out for attention are those involving New Zealand’s Christchurch Cathedral which anyone with responsibility for heritage-listed buildings should study carefully, for implications in relation to their own circumstances. A number of cases summarised in this Almanac are working their way through the appeals process and care should be taken with their application. In addition, some of the cases are from jurisdictions outside Australia, and readers should exercise caution when considering the implications of these cases for Australian law. LEGISLATION The Almanac includes a review of major statutory amendments during 2013, which are relevant to the nonprofit sector in all Australian jurisdictions. Special thanks must go to Nathan MacDonald and the JusticeConnect team for providing legislative updates for Victoria. SPECIAL ISSUES DURING 2013 A number of legal practitioners have contributed articles on significant legal issues facing nonprofit organisations: charitable trusts giving to government entities (Alice Macdougall); workplace bullying (Tim Longwill); and privacy (James Tan and Nina Brewer). WORLD ROUND-UP Major developments from the UK and Ireland (Kerry O’Halloran), Canada (Peter Broder), New Zealand (Michael Gousmett and Susan Barker) and Jamaica (Frances Hannah) are all summarised in a review of a significant part of the common law charity jurisdictions. WHAT DOES 2014 HOLD The final section moves from looking in the rear view mirror to peering out the front windscreen to discern the reform agenda. The view from the windscreen in 2013 was of considerable reform traffic at the Commonwealth level jostling for a place in the parliamentary agenda. This year is quite different with a smaller number of vehicles ahead, but the potential for significant impact.

Detection and quantification of tear phospholipids and cholesterol in contact lens deposits : the effect of contact lens material and lens care solution

PURPOSE. To examine the deposition of tear phospholipids and cholesterol onto worn contact lenses and the effect of lens material and lens care solution. METHODS. Lipids were extracted from tears and worn contact lenses using 2:1 chloroform: Methanol and the extract washed with aqueous ammonium acetate, before analysis by electrospray ionization tandem mass spectrometry (ESI-MS/MS). RESULTS. Twenty-three molecular lipids from the sphingomyelin (SM) and phosphatidylcholine (PC) classes were detected in tears, with total concentrations of each class determined to be 5 ± 1 pmol/μL (~3.8 μg/mL) and 6 ± 1 pmol/μL (~ 4.6μg/mL), respectively. The profile of individual phospholipids in both of these classes was shown to be similar in contact lens deposits. Deposition of representative polar and nonpolar lipids were shown to be significantly higher on senofilcon A contact lenses, with ~59 ng/lens SM, 195 ng/lens PC, and 9.9 μg/lens cholesterol detected, whereas balafilcon A lens extracts contained ~19 ng/lens SM, 19 ng/lens PC, and 3.9 μg/lens cholesterol. Extracts from lenses disinfected and cleaned with two lens care solutions showed no significant differences in total PC and SM concentrations; however, a greater proportion of PC than SM was observed, compared with that in tears. CONCLUSIONS. Phospholipid deposits extracted from worn contact lenses show a molecular profile similar to that in tears. The concentration of representative polar and nonpolar lipids deposited onto contact lenses is significantly affected by lens composition. There is a differential efficacy in the removal of PC and SM with lens care solutions.

Critical care nurses' perceptions of their educational needs

A survey of nurses working in critical care units in 89 Queensland hospitals was conducted to investigate their perceptions of critical care nurses' educational needs. Two thirds of the 62 respondents were from rural units and one third were from metropolitan units. Most respondents, irrespective of geographic location, wanted critical care education to be located in hospitals and to be accredited as a graduate diploma course. Rural and metropolitan nurses had similar educational needs and many worked for hospitals that were not offering adequate orientation or inservice critical care education. The findings that nursing staff turnover was a problem in metropolitan units and that the rural workforce was more stable have implications for the development of educational programs.

Social ecological influences on preferences for care provided at the end of life amongst Taiwanese city-dwelling adults

Social and cultural elements are an essential part of the contexts within which people understand their word and make end-of-life decisions. A developmental social ecological model was used in this thesis to provide a comprehensive framework for examining influences on end-of-life preferences. The findings support claims made by social ecologists that individual's health-related choices can be influenced by cultural, social contextual and environmental factors over the course of life. The results of this study have implications for health professionals and the practices they can adopt to enhance end-of-life care.