Identifying and assessing the needs of carers of patients with palliative care needs: An exploratory study

© 2018 MA Healthcare Ltd. Background: Carers of patients with palliative care needs require careful assessment and support to undertake their role effectively. The carer component of palliative care is embedded in complex situations that necessarily focus on the patient. Aims: To explore experiences of specialist palliative care nurses in identifying, assessing and planning care to support those looking after patients with palliative care needs. Results: Findings identified gaps in identifying carers and their role, and in assessing carers' needs. Conclusions: This study confirmed the complexity in assessing carers' needs within the palliative care context, that practice gaps exist and positive outcomes result when routine processes were adopted. Future research should explore how to systematically make improvements in supporting carers in all palliative care contexts, including specialist and non-specialist settings

Strengthening palliative care in the hospital setting: a codesign study.

OBJECTIVE:To identify actions required to strengthen the delivery of person and family centred hospital-based palliative care so that it addressed the domains of care identified as important for inpatients with palliative care needs and their families. METHODS:A codesign study involving a workshop with palliative care and acute hospital policy, consumer and clinical representatives in Australia. A modified nominal group process generated a series of actions, which were thematically analysed and refined, before being circulated to participants to gain consensus. RESULTS:More than half (n=30, 58%) of the invited representatives (n=52) participated in the codesign process. Nine actions were identified as required to strengthen inpatient palliative care provision being: (a) evidence-informed practice and national benchmarking; (b) funding reforms; (c) securing executive level support; (d) mandatory clinical and ancillary education; (e) fostering greater community awareness; (f) policy reviews of care of the dying; (g) better integration of advance care planning; (h) strengthen nursing leadership; and (i) develop communities of practice for improving palliative care. CONCLUSIONS:Changes to policy, practice, education and further research are required to optimise palliative care within hospital settings, in accordance with the domains inpatients with palliative care needs and their families consider to be important. Achieving these changes will require a whole of sector approach and significant national and jurisdictional leadership

Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important

© The Author(s) 2015. Background: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. Aim and design: This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. Data sources: Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. Results: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. Conclusion: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals

National quality indicators and policies from 15 countries leading in adult end-of-life care: A systematic environmental scan

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Background: The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision. Methods: A systematic environmental scan that included a web search to identify relevant national policies and indicators; hand searching for additional materials; information from experts listed for the top 10 (n=15) countries ranked in the 'quality of care' category of the 2015 Quality of Death Index study; and snowballing from Index experts. Findings: Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%). Interpretations: Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families

Analyzing Consumer Priorities for Hospital End-of-Life Care Using a Systematic Review to Inform Policy and Practice

A systematic review is a useful method to answer a research question where prior studies have been conducted. A well-designed and executed systematic review can inform policy and/or practice change. It can also identify gaps and generate new research questions. Although the requirements considered essential for conducting a rigorous systematic review are well defined in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, the approaches taken to synthesize the data vary. This case study describes the narrative synthesis of heterogeneous quantitative studies and the meta-synthesis of qualitative studies used to answer a complex research question from the consumer perspective. The study design focused on the analysis of consumer data only. As a result, the synthesis of both quantitative data and qualitative data has provided a detailed insight into consumers' unique perspectives and needs. The synthesis approach for both datasets is described, and linkages to key tools and resources to help facilitate this approach are provided. Processes used by the research team to enable effective research governance and collaboration throughout are also detailed

Elements of effective palliative care models: A rapid review

Background: Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method. A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results: Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals' changing needs and preferences over time. Conclusion: Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia's health system. © 2014 Luckett et al.; licensee BioMed Central Ltd

Working together to make Indigenous health care curricula everybody's business: A graduate attribute teaching innovation report

© eContent Management Pty Ltd. Previously there has been commitment to the idea that Indigenous curricula should be taught by Indigenous academic staff, whereas now there is increasing recognition of the need for all academic staff to have confidence in enabling Indigenous cultural competency for nursing and other health professional students. In this way, Indigenous content can be threaded throughout a curriculum and raised in many teaching and learning situations, rather than being siloed into particular subjects and with particular staff. There are many sensitivities around this change, with potential implications for Indigenous and non-Indigenous students and staff, and for the quality of teaching and learning experiences. This paper reports on a collaborative process that was used to reconceptualise how Indigenous health care curricula would be positioned throughout a programme and who would or could work with students in this area. Effective leadership, establishing a truly collaborative environment, acknowledging fears and perceived inadequacies, and creating safe spaces for sharing and learning were crucial in effecting this change

Involving consumers with palliative care needs and their families in research: A case study

© 2019 Australian College of Nursing Ltd Background: There are significant policy imperatives to involve consumers at the outset of and throughout research. How best to achieve this in an authentic and meaningful way is elusive, particularly within the palliative care population. Aim: To determine how best to engage people with palliative care needs and their families in co-designing a qualitative study to better understand how to improve care of the dying in the acute care setting. Methods: A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se. Findings: Eleven consumers contributed across five panel meetings. Analysis of documented feedback led to four key areas of protocol change: Getting the language in the recruitment materials and information and consent forms right; Developing a feasible and acceptable recruitment strategy; Opportunities to more clearly articulate the explicit value of this research for patients and families; Support strategies for participants. Discussion: Authentic consumer engagement requires time and effort; however, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided. Conclusion: Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives

Plastic with personality: Increasing student engagement with manikins

© 2015 Elsevier Ltd. Background: Simulation allows students to practice key psychomotor skills and gain technical proficiency, fostering the development of clinical reasoning and student confidence in a low risk environment. Manikins are a valuable learning tool; yet there is a distinct lack of empirical research investigating how to enhance engagement between nursing students and manikins. Objective: To describe student perspectives of a layered, technology enhanced approach to improve the simulation learning experience. Educational Framework: Tanner's Model of Clinical Judgment underpins the entire curriculum. This study additionally drew on the principles of narrative pedagogy. Intervention: Across ten teaching weeks, five separate case studies were introduced to students through short vignettes. Students viewed the vignettes prior to their laboratory class. In the labs, manikins were dressed in the props used in the vignettes. Setting: The innovation was trialed in a second year core subject of a Bachelor of Nursing program in a large urban university in the autumn semester of 2014. Data Collection and Analysis: Following ethics approval, students were emailed a participant information sheet. A focus group of nine students was held. The discussion was digitally recorded and transcribed verbatim prior to being subject to thematic analysis. Students' comments (143) about the vignettes in their standard subject specific student feedback surveys were also considered as data. Results: Four themes were identified: Getting past the plastic; knowing what to say; connecting and caring; and, embracing diversity. The feedback indicated that these measures increased students ability to suspend disbelief, feel connected to, and approach the manikins in a more understanding and empathetic fashion. Conclusions: In addition to achieving increased engagement with manikins, other advantages such as students reflecting on their own values and pre-conceived notions of people from diverse backgrounds were realized