Building public engagement and access to palliative care and advance care planning: a qualitative study.

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Leadership practices that enable healthful cultures in clinical practice: A realist evaluation.

AIM: To generate, test and refine programme theories that emerged from a rapid realist review investigating practising UK Nurses' and Midwives' experiences of effective leadership strategies during the COVID-19 pandemic. BACKGROUND: The realist review of literature generated six tentative theories of healthful leadership practices reflecting, working with people's beliefs and values; being facilitative; multiple means of communication and; practical support. The review yielded little insight into the actual impact of the leadership approaches advocated. METHODS: A realist study, informed by person-centredness using mixed-methods. Online survey (n = 328) and semi-structured interviews (n = 14) of nurses and midwives across the UK in different career positions/specialities. Quantitative data analysed using descriptive statistics and exploratory factor analysis. Framework analysis for qualitative data using context (C), mechanism (M), outcome (O) configurations of the tentative theories. RESULTS: Three refined theories were identified concerning: Visibility and availability; embodying values and; knowing self. Healthful leadership practices are only achievable within organisational cultures that privilege well-being. CONCLUSIONS: Leaders should intentionally adopt practices that promote well-being. 'Knowing self' as a leader, coaching and mentoring practice development is important for leadership development. IMPLICATIONS FOR CLINICAL PRACTICE: Nurses who feel valued, heard, cared for and safe are more likely to remain in clinical practice. Job satisfaction and being motivated to practice with confidence and competence will impact positively on patient outcomes. IMPACT: The study addresses the role of leadership in developing healthful workplace cultures. The main findings were six leadership practices that promote healthful cultures. The research will have an impact on strategic and clinical leaders, nurses and midwives. REPORTING METHOD: This study used EQUATOR checklist, RAMASES II as reporting standards for realist evaluations. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Culture, ethnicity, and socio-economic status as determinants of the management of patients with advanced heart failure who need palliative care: A clinical consensus statement from the Heart Failure Association (HFA) of the ESC, the ESC Patient Forum, and the European Association of Palliative Care.

The delivery of effective healthcare entails the configuration and resourcing of health economies to address the burden of disease, including acute and chronic heart failure, that affects local populations. Increasing migration is leading to more multicultural and ethnically diverse societies worldwide, with migration research suggesting that minority populations are often subject to discrimination, socio-economic disadvantage, and inequity of access to optimal clinical support. Within these contexts, the provision of person-centred care requires medical and nursing staff to be aware of and become adept in navigating the nuances of cultural diversity, and how that can impact some individuals and families entrusted to their care. This paper will examine current evidence, provide practical guidance, and signpost professionals on developing cultural competence within the setting of patients with advanced heart failure who may benefit from palliative care.

Exploring the contribution and impact of master's education for leadership development in adult general nursing: A scoping review.

AIM: The aim of this scoping review was to explore the evidence relating to master's education for leadership development in adult/general nurses who are not in advanced practice or leadership roles and its impact on practice. BACKGROUND: The importance of effective, clinical leadership in nursing and health care, has been highlighted following failings reported by Public Inquiries both nationally and internationally. While initiatives have been implemented to address these, the provision of safe, quality care remains problematic. Complex care requires highly skilled professionals to challenge and lead improvements in practice. Master's education results in graduates with the skills and confidence to make these changes and to become the clinical leaders of the future. METHODS: An a priori scoping review protocol was developed by the review team. This was used to undertake searches across CINAHL Ultimate; Medline (Ovid), Scopus and ProQuest Complete databases, chosen due to their relevance to the subject area. Articles were limited to those in the English Language, peer reviewed and published since 2009. Citation chaining via the reference lists of frequently identified articles were also searched. A further search for relevant grey material using the same relevant keywords and phrases was performed using the limited, Trip Database and Google Scholar. RESULTS: Eight articles were selected for data extraction, and these were published between 2011 and 2019. The articles were predominantly from the UK and Europe, with a focus either on master's education or on aspects of leadership in nursing and healthcare. Themes identified: a) The need for clinical leadership; b) master's education for clinical leadership skills; and c) master's education for professional and organisational outcomes. CONCLUSIONS: The scoping review identified that there is a need for strong clinical leadership in the practice setting. Evidence shows that effective nursing leadership can improve patient outcomes as well as enhancing workplace culture and staff retention. The review has shown that the skills required for clinical leadership are those produced by master's education. Studies of the impact of master's education are often self reported and tend to focus on nurses in advanced practice roles. More research is required into master's education for adult/general nurses not in advanced roles and in examining the link between master's education and improved patient, professional and organisational outcomes.

The experience of shared decision-making for patients with end-stage kidney disease undergoing haemodialysis and their families-A scoping review.

AIM: To identify the experiences of shared decision-making (SDM) for adults with end-stage kidney disease undergoing haemodialysis (HD) and their family members. DESIGN: A scoping literature review. METHOD: A scoping literature review, using Joanna Briggs Institute guidelines. DATA SOURCES: Medline (OVID), EMBASE, CINAHL, Psych Info, ProQuest, Web of Science, Open grey and grey literature were searched covering years from January 2015 to July 2022. Empirical studies, unpublished thesis and studies in English were included. The scoping review was conducted using the Preferred Reporting Items for Systematic Meta analysis-scoping review extension (PRISMA-Scr). RESULTS: Thirteen studies were included in the final review. While SDM is welcomed by people undergoing HD, their experience is often limited to treatment decisions, with little opportunity to revisit decisions previously made. The role of the family/caregivers as active participants in SDM requires recognition. CONCLUSION: People with end-stage kidney disease undergoing HD do and want to participate in the process of SDM, on a wide range of topics, in addition to treatment. A strategy is needed to ensure that SDM interventions are successful in achieving patient-driven outcomes and enhancing their quality of life. IMPLICATIONS FOR CLINICAL PRACTICE: This review highlights the experiences of people undergoing HD and their family/caregivers. There is a wide variety of clinical decisions requiring consideration for people undergoing HD, including considering the importance who should be involved in the decision-making processes and when decisions should occur. Further study to ensure nurses understand the importance, and influence of including family members in conversations on both SDM processes and outcomes is needed. There is a need for research from both patient and healthcare professional (HCP) perspectives to ensure that people feel supported and have their needs met in the SDM process. PATIENT AND PUBLIC CONTRIBUTION: No patient or public contribution.

Supporting older people following out of hours discharge from the Emergency Department: An integrative review of the literature.

BACKGROUND: For many older people the emergency department (ED) is an important but sometimes difficult step in their healthcare journey. They often attend the ED with co and multi morbidities. Discharge home at evenings and weekends when post-discharge support services are limited can result in a delay or failure to follow through on their discharge plan leading to adverse health outcomes and in some cases, readmission to ED. OBJECTIVE: The aim of this integrative review was to identify and appraise the support available to older people following discharge from the ED out of hours (OOH). METHODS: For this review, out of hours referred to those times after 17.30 until 08.00 a.m. on Mondays to Fridays, all hours on weekends and public holidays. Whittemore and Knafl's (Journal of Advanced Nursing, 2005;52:546), framework was used to guide all stages of the review process. Articles were retrieved following a rigorous search of published works using various databases, the grey literature and hand search of the reference lists of the studies included. RESULTS: In total 31 articles were included in the review. These comprised systematic reviews, randomised control studies, cohort studies and surveys. Main themes identified included processes that enable support, support provision by health and social care professionals and telephone follow-up. Results identified a significant dearth of out of hours discharge research and a strong recommendation for more concise and thorough research in this important area of care transition. CONCLUSION: Older person discharge home from the ED presents an associated risk as previous research has identified frequent readmission and periods of ill health and dependency. Out of hours discharge can be even more problematic when it may be difficult to arrange support services and ensure continuity of care. Further work in this area is required, taking cognisance of the findings and recommendations identified in this review.

Out-of-hours community palliative care: a national survey of hospice providers.

BACKGROUND: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. AIM: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. METHODS: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. FINDINGS: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. CONCLUSION: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes.

Chinese Diaspora Communities' Knowledge of and Engagement with Advance Care Planning: A Systematic Integrative Review.

Objectives: To synthesize evidence regarding Chinese diasporas' understanding, experience, and factors influencing engagement with advance care planning. Methods: A systematic integrative review using content analysis. Seven electronic databases (Embase, CINAHL, SCOPUS, Web of Science, Medline (OVID), PsycINFo, and The Cochrane Library) and gray resources were searched for studies from January 1990 to March 2022. Study quality appraisal was undertaken. Results: 27 articles were identified and rated as moderate to good. Two overarching and interrelated themes were identified, "Awareness and knowledge" and "Engagement with advance care planning." There are low levels of awareness, knowledge and engagement with advance care planning for Chinese diaspora. Findings highlight that this is influenced by two key factors. First, the geographic context and legal, cultural, and social systems within which the Chinese diasporas are living act as a potential catalyst to enhance awareness and engagement with advance care planning. Second, aspects of Chinese diasporas' original culture, such as filial piety and a taboo surrounding death, were reported to negatively affect the promotion and engagement of advance care planning. Significance of Results: Chinese diasporas are intermediaries between two divergent cultures that intertwine to strongly influence engagement with advance care planning. Hence, a bespoke culturally tailored approach should be accommodated in future research and practice for Chinese communities in multicultural countries to further advance palliative and end-of-life care awareness among this group.

Design and implementation of an online admissions interview for selection to nursing and midwifery programmes: a partnership approach.

BACKGROUND: The recent surge in applications to nursing in the United Kingdom together with the shift towards providing virtual interviews through the use of video platforms has provided an opportunity to review selection methodologies to meet a new set of challenges. However there remains the requirement to use selection methods which are evidence-based valid and reliable even under these new challenges. METHOD: This paper reports an evaluation study of applicants to nursing and midwifery and reports on how to plan and use online interviews for in excess of 3000 applicants to two schools of nursing in Northern Ireland. Data is reported from Participants, Assessors and Administrators who were asked to complete an online evaluation using Microsoft Forms. RESULTS: A total of 1559 participants completed the questionnaire. The majority were aged 17-20. The findings provide evidence to support the validity and reliability of the online interview process. Importantly the paper reports on the design and implementation of a fully remote online interview process that involved a collaboration with two schools of nursing without compromising the rigour of the admissions process. The paper provides practical, quantitative, and qualitative reasons for concluding that the online remote selection process generated reliable data to support its use in the selection of candidates to nursing and midwifery. CONCLUSION: There are significant challenges in moving to online interviews and the paper discusses the challenges and reflects on some of the broader issues associated with selection to nursing and midwifery. The aim of the paper is to provide a platform for discussion amongst other nursing schools who might be considering major changes to their admissions processes.

UK nurses' and midwives' experiences of healthful leadership practices during the COVID-19 pandemic: A rapid realist review.

AIM: We aim to explore healthful leadership practices in nursing and midwifery evident within the COVID-19 pandemic in the United Kingdom, the contextual facilitators, barriers and outcomes. BACKGROUND: Globally, the health and care sectors are under pressure and despite nurses and other professionals, demonstrating resilience and resourcefulness in the COVID-19 pandemic; this has negatively impacted on their health and wellbeing and on patient care. EVALUATION: Two searches were conducted in July 2021 and December 2021. Inclusion/exclusion criteria were identified to refine the search, including papers written since the beginning of the pandemic in 2020. A total of 38 papers were included principally from the United States and United Kingdom. Ten were research papers; the others were commentaries, opinion pieces and editorials. MS Teams literature repository was created. A unique critical appraisal tool was devised to capture contexts, mechanisms and outcomes whilst reflecting more standardized tools, that is, the Critical Appraisal Skills Programme and the Authority, Accuracy, Coverage, Objectivity and Date tool for reviewing grey literature to refine the search further. KEY ISSUES: Six tentative theories of healthful leadership emerged from the literature around leadership strategies, which are relational, being visible and present; being open and engaging; caring for self and others; embodying values; being prepared and preparing others; and using available information and support. Contextual factors that enable healthful leadership practices are in the main, created by leaders' values, attributes and style. The literature suggests that leaders who embody values of compassion, empathy, courage and authenticity create conditions for positive and healthful relations between leaders and others. Nurse and midwives' voices are however absent from the literature in this review. CONCLUSION: Current available literature would suggest healthful leadership practices are not prioritized by nurse leaders. Perspectives of nurses' and midwives' about the impact of such practices on their wellbeing is also missing. Tentative theories are offered as a means of identifying healthful leadership strategies, the context that enable these and potential outcomes for nurses and midwives. These will be explored in phase two of this study. IMPLICATIONS FOR NURSING MANAGEMENT: Nurse leaders must be adequately prepared to create working environments that support nurses' and midwives' wellbeing, so that they may be able to provide high-quality care. Ensuring a supportive organizational culture, which embodies the values of healthfulness, may help to mitigate the impact of the COVID-19 pandemic on nurses' and midwives' wellbeing in the immediate aftermath and going forward.

An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting.

BACKGROUND: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings. METHODS: A secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire - Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures' domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis. RESULTS: Sixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p < 0.05). CONCLUSIONS: This study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research.

The impact of covid-19 on out-of-hours adult hospice care: an online survey.

BACKGROUND: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. METHODS: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. RESULTS: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. CONCLUSIONS: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

Using virtual reality in palliative care: a systematic integrative review.

BACKGROUND: Recently, healthcare services have witnessed an exponential increase in the use of immersive and non-immersive virtual reality (VR) technology to improve health-related outcomes. However, the use of VR in palliative care remains relatively unexplored. AIMS: To review and synthesise evidence regarding the experiences of patients, families and healthcare professionals in palliative care who have engaged with immersive/non-immersive VR technology. METHODS: A systematic integrative review using pre-defined MeSH search terms to identify eligible studies from five electronic databases (Cochrane Library, CINAHL, OVID Medline, Pubmed and Scopus) between April 2020 and February 2021. FINDINGS: In total, 1066 articles were reviewed, 55 articles were considered eligible and subject to further analysis and a total of 16 articles met the inclusion criteria and were subject to critical appraisal. Rigorous analysis of eligible articles resulted in the identification of five overarching and interconnected themes: connection, VR as an emergent technology, perceptual change, safety, and future research. CONCLUSION: This review identified that VR could support patients, families and healthcare professionals in palliative care. As a result of the COVID-19 pandemic, the findings could prove particularly significant for facilitating connection. However, further research is necessary to explore the full scope of VR use in this speciality.

Palliative care in Japanese long-term care facilities.

BACKGROUND: Internationally, the demand for the provision of high-quality palliative care is increasing exponentially. Japan is a rapidly ageing society and it is therefore important to understand the current context to develop practice and inform future resource allocation in long-term care facilities (LTCFs). AIM: To describe the broad context of palliative care services, practice, education and policies in LTCFs in Japan. METHODS: A process of expert elicitation and documentary review undertaken. The WHO palliative care model for public health was used as an analytical framework. FINDINGS: Several deficits were identified regarding palliative care in Japanese LTCFs: a lack of palliative care strategy and standardised training for staff, and limited information on the use of palliative care medicines, quality improvement tools and frameworks. CONCLUSION: Such deficits need to be addressed to inform current nursing practice, future training needs for staff, quality care initiatives and decision making for advance care planning and resource allocation to respond to the ever-increasing demand for palliative care in these settings.

Implantable cardioverter defibrillator (ICD) functionality: patient and family information for advanced decision-making.

As the number of implantable cardioverter defibrillators (ICDs) implanted continues to rise, there is a growing challenge to ensure patients and family members are adequately equipped for involvement in future end-of-life decisions concerning their device. OBJECTIVE: To explore patients', family members' and professionals' attitudes and understanding towards discussing ICD deactivation. METHODS: Case study approach using qualitative interviews and framework analysis. A total of 29 qualitative interviews were undertaken, involving patients with a device, family members and healthcare professionals. Interviews were audio-recorded, transcribed verbatim and analysed using framework analysis. Data were triangulated with information obtained from the patients' medical records (n=10). RESULTS: Three main themes: (1) Professionals were reluctant to engage in conversations concerning deactivation, particularly prior to implantation, believing this was in the patient's best interest. (2) Patients and family members had limited understanding of the implanted device and its functions. It was frequently perceived as 'life-saving' with any negativity of the shock experience seen as acceptable. (3) All patients wanted the opportunity to discuss deactivation when death was imminent, but were indecisive whether family members should be involved. Similarly, some patients felt the decision to deactivate rested solely with the medical profession while others felt it should be a joint decision between patient, family and clinical team. CONCLUSIONS: Patients and family members require improved communication and information concerning their future treatment plan and functionality of an ICD. A proactive approach to discuss deactivation would enable shared clinical decision-making in the advanced stages of illness.

Parents' experiences of initiation of paediatric advance care planning discussions: a qualitative study.

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents' experience of the initiation of their child's advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were 'giving up'. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families' individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known: • In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child's end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New: • Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals' approach needs to be professional, respectful and empathetic to the parent and child's situation. • Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.