Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory.

BACKGROUND: Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes. METHODS: Using Charmaz's constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. RESULTS: Elders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis. DISCUSSION: African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people's habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making. CONCLUSIONS: Recognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.

Intrathecal drug delivery for cancer pain at the end of life: a case study.

Two-thirds of patients with advanced cancer have pain and, of these, approximately 10-20% do not respond to conventional pain management approaches. This case study concerns a hospice patient who received intrathecal drug delivery for intractable cancer pain at the end of life. This involved working in partnership with a hospital-based interventional pain team. Despite side-effects and complications associated with intrathecal drug delivery and the requirement for inpatient nursing care, intrathecal drug delivery was the best option for the patient. The case identifies the importance of a patient-centred approach to decision-making, effective partnerships between hospice and acute hospital teams, and nurse education as key factors contributing to the provision of safe and effective intrathecal drug delivery.

Protocol for SARS-CoV-2 post-vaccine surveillance study in Australian adults and children with cancer: an observational study of safety and serological and immunological response to SARS-CoV-2 vaccination (SerOzNET).

BACKGROUND: Cancer is associated with excess morbidity and mortality from coronavirus disease 2019 (COVID-19) following infection by the novel pandemic coronavirus SARS-CoV-2. Vaccinations against SARS-CoV-2 have been rapidly developed and proved highly effective in reducing the incidence of severe COVID-19 in clinical trials of healthy populations. However, patients with cancer were excluded from pivotal clinical trials. Early data suggest that vaccine response is less robust in patients with immunosuppressive conditions or treatments, while toxicity and acceptability of COVID-19 vaccines in the cancer population is unknown. Unanswered questions remain about the impact of various cancer characteristics (such as treatment modality and degree of immunosuppression) on serological response to and safety of COVID-19 vaccinations. Furthermore, as the virus and disease manifestations evolve, ongoing data is required to address the impact of new variants. METHODS: SerOzNET is a prospective observational study of adults and children with cancer undergoing routine SARS-CoV-2 vaccination in Australia. Peripheral blood will be collected and processed at five timepoints (one pre-vaccination and four post-vaccination) for analysis of serologic responses to vaccine and exploration of T-cell immune correlates. Cohorts include: solid organ cancer (SOC) or haematological malignancy (HM) patients currently receiving (1) chemotherapy, (2) immune checkpoint inhibitors (3) hormonal or targeted therapy; (4) patients who completed chemotherapy within 6-12 months of vaccination; (5) HM patients with conditions associated with hypogammaglobulinaemia or immunocompromise; (6) SOC or HM patients with allergy to PEG or polysorbate 80. Data from healthy controls already enrolled on several parallel studies with comparable time points will be used for comparison. For children, patients with current or prior cancer who have not received recent systemic therapy will act as controls. Standardised scales for quality-of-life assessment, patient-reported toxicity and vaccine hesitancy will be obtained. DISCUSSION: The SerOzNET study was commenced in June 2021 to prospectively study immune correlates of vaccination in specific cancer cohorts. The high proportion of the Australian population naïve to COVID-19 infection and vaccination at study commencement has allowed a unique window of opportunity to study vaccine-related immunity. Quality of life and patient-reported adverse events have not yet been reported in detail post-vaccination for cancer patients. Trial registration This trial is registered on the Australia New Zealand Clinical Trials Registry (ANZCTR) ACTRN12621001004853. Submitted for registration 25 June 2021. Registered 30 July 2021 (Retrospectively registered). https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382281&isReview=true.

The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning.

BACKGROUND: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. AIM: To explore the barriers and enablers to advance care planning engagement with frail elders. DESIGN: Qualitative in-depth interviews with thematic analysis. SETTING/PARTICIPANTS: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons' service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71-95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. RESULTS: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. CONCLUSIONS: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts.

Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: A meta-ethnography.

BACKGROUND: People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care. AIM: To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach. DESIGN: Systematic interpretive exploration using the process of meta-ethnography was utilised. DATA SOURCES: CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme. RESULTS: The following four storylines were constructed: 'My family will carry out everything for me; it is trust'; 'No Mum, don't talk like that'; 'I leave it in God's hands'; and 'Who's going to look after us?' The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children.

Employing newly qualified nurses to work in hospices: A qualitative interview study.

AIM: To establish an understanding of the experiences of newly qualified nurses' working in hospices from the perspective of both newly qualified and senior nurses. DESIGN: A qualitative interview study. METHODS: Semi-structured interviews with six newly qualified nurses and five senior nurses from four UK hospices were conducted between March - July 2017. RESULTS: The hospices involved in this study were among the first to recruit newly qualified nurses. Participants believed that newly qualified nurses coped well with hospice working and received unique opportunities for professional development. Participants identified the value of formal and informal support, however, newly qualified nurses faced negative attitudes from some established staff. Newly qualified nurses expressed concerns about a perceived lack of technical clinical skills training, however, they highlighted gaining end-of-life care and communication skills that would be transferrable to other settings. Participants highlighted the need to allocate more time for education and formal support including preceptorship. Senior staff did not necessarily expect newly qualified nurses to remain in long-term hospice employment suggesting that they could disseminate their hospice learning to future workplaces. CONCLUSION: This study supports recruitment strategies that increasingly target newly qualified nurses to work in hospices with findings suggesting that hospices can be a suitable environment for recent graduates to work in. The senior nurses in this study viewed the employment of newly qualified nurses in a positive light but shared the concerns of newly qualified nurses regarding skills training. IMPACT: At a time when hospices need to expand if they are going to meet demand for their services, they along with most areas of healthcare face difficulties recruiting and retaining registered nurses. To increase the appeal of hospice employment, recruitment campaigns aimed at newly qualified nurses should emphasize the transferability of skills gained in hospice settings.

Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model.

BACKGROUND: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders' vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations. AIM: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development. DESIGN: A structured integrative review of relevant literature. DATA SOURCES: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018. RESULTS: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality. CONCLUSION: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.

Enhancing student communication during end-of-life care: A pilot study.

BACKGROUND: Quality end-of-life care requires effective communication skills, yet medical and nursing students report limited opportunities to develop these skills, and that they lack confidence and the related competence. OBJECTIVES: Our purpose was to design, implement, and evaluate an educational intervention employing simulated patient actors to enhance students' abilities to communicate with dying patients and their families. METHODS: A study employing a mixed-methods design was conducted with prequalification nursing and medical students recruited from a London university. The first phase involved focus groups with students, which informed the development of an educational intervention involving simulated patient actors. Questionnaires measuring students' perceptions of confidence and competence levels when communicating with dying patients and their families were administered before and after the intervention. RESULTS: The themes from focus groups related to responding to grief and anger, difficulties dealing with emotions, knowing the "right thing" to say, and a lack of experience. A significant increase (p < 0.5) in competence and confidence from baseline levels followed participation in the simulated scenarios. SIGNIFICANCE OF RESULTS: Simulation was found to be an effective means of preparing students to communicate with dying patients and their families. The opportunity to develop communication skills was valued. Integration of educational interventions employing simulated patient actors into nursing and medical curricula may assist in improving the care provided to patients at the end of life.

Nostalgic constructions of nurse education in British national newspapers.

AIM: To explore nostalgic constructions of nurse education in British National newspapers. BACKGROUND: British newspaper discourse relating to the increased academic level of nurse education in the UK is negative, evoking comparisons between negative constructions of nurse education in the present and an idealized nostalgic view of the past. DESIGN: Discussion paper. DATA SOURCES: This study used a critical discourse analysis approach to analyse 11 British Newspaper articles, which exemplify nostalgic constructions of nurse education. This was a purposive sample from a database search (LexisNexis) of British national newspaper articles relating to the increasing academic level of nurse education in the period from 1999-2012. IMPLICATIONS FOR NURSING: A dominant nostalgic discourse constructs a 'golden era' of nurse education, which idealizes the past, making the present flawed in comparison. Nostalgic constructions create group identities creating contrasting 'caring' nurses educated in the idealized past with those educated now, who are perceived as too educated to care. An inherent characteristic of the nostalgic discourse is the notion that the solution to current problems with nurse education is a return to an idealized version of the past. Another less common newspaper discourse views nostalgia as a problematic construct. CONCLUSION: Nostalgic discourse with a focus on the past potentially acts as a barrier to creating an effective nurse education system for the 21(st) Century. This focus on an idealized past also has potential consequences in terms of public opinion and legitimization of government policy, which might otherwise be viewed as retrograde.

The use of metaphors by service users with diverse long-term conditions: a secondary qualitative data analysis.

Long-term conditions and accompanied co-morbidities now affect about a quarter of the UK population. Enabling patients and caregivers to communicate their experience of illness in their own words is vital to developing a shared understanding of the condition and its impact on patients' and caregivers' lives and in delivering person-centred care. Studies of patient language show how metaphors provide insight into the physical and emotional world of the patient, but such studies are often limited by their focus on a single illness. The authors of this study undertook a secondary qualitative data analysis of 25 interviews, comparing the metaphors used by patients and parents of patients with five longterm conditions. Analysis shows how similar metaphors can be used in empowering and disempowering ways as patients strive to accept illness in their daily lives and how metaphor use depends on the manifestation, diagnosis, and treatment of individual conditions. The study concludes with implications for how metaphorical expressions can be attended to by healthcare professionals as part of shared care planning.

A critical discourse analysis of British national newspaper representations of the academic level of nurse education: too clever for our own good?

This critical discourse analysis examines articles about the academic level of nurse education that appeared in British national newspapers between 1999 and 2009. British newspaper journalists regularly attribute problems with recruitment into nursing and nursing care to the increasing academic nature of nurse education. It is impossible to separate discourse about nurse education from the wider nursing discourse. Many journalists laud a traditional and stereotypical construct of nurse identity and suggest that increasing nurse education produces nurses who are 'too clever to care'. This article argues that whilst nurses lack a voice in the National press, they have little input into the construction of newspaper discourse about nurse education and subsequently, limited influence on resulting public opinion, government policy and the morale of nurses.

From 'part of ' to 'partnership': the changing relationship between nurse education and the National Health Service.

Worldwide, many countries have moved towards incorporating nurse education into the higher education sector and this inevitably has implications for the relationship between nurse education providers and local health service providers. This study explores the changes to the relationship in the UK between nurse education providers and the UK National Health Service over the past 20 years and demonstrates how two political ideologies have been central to those changes. The two ideologies of interest are the introduction of internal markets to the National Health Service by the Conservative government at the end of the 1980s and the New Labour response to the fragmentation of public services caused by Conservative neoliberal policy, which was to introduce the notion of 'partnership working'. This study reviews the wider debate around partnership policy and applies that debate to evaluate the way that nurse education providers and the National Health Service are working in partnership to provide clinical practice placements for nursing students.

Does post-registration palliative care education for nurses improve practice? A systematic review.

AIMS: We aimed to answer the question: what is the evidence that post-registration palliative care education for nurses improves practice? BACKGROUND: The 2008 End of Life Care Strategy emphasised the need for a workforce equipped to provide high-quality end-of-life care for patients and their families. As registered nurses are the healthcare professionals spending most time with patients and families at the end of life, associated policy documents stress the importance of educating nurses to equip them with the necessary knowledge and skills to provide effective care. Despite education being a consistent recommendation, the ability of education to influence nursing practice is uncertain. METHODS: We undertook a systematic review of literature using Joanna Briggs Institute Methodology for Mixed Methods by searching the Medline, Embase and CINAHL databases between January 2006 and December 2018. FINDINGS: Ten studies met the inclusion criteria, seven contained quantitative data. Six demonstrated improvements in outcome measures, but not all results were statistically significant. Most quantitative data related to self-reported measures of confidence. Six studies contained qualitative findings that were categorised into themes: confidence, practice change, skills and proactivity. CONCLUSION: Little research exists exploring the impact of post-registration palliative care education for nurses. Existing outcome measures do not clearly demonstrate changes to end-of-life practice. Research is suggested to establish links between self-reported confidence and improvements to practice. Evaluation of the impact on practice should be an integral component of end-of-life education initiatives.

Using action learning sets to support change in end-of-life care.

Purpose The purpose of this paper is to describe the delivery of facilitated action learning sets as an integral component of a multidisciplinary end-of-life care course. Design/methodology/approach The educational intervention described in this paper is delivered by specialist palliative care practitioners to those working with dying patients and their families in non-specialist settings. The programme consists of two components: the first taught/experience-based component takes place in a hospice. The second integral component involves action learning sets which are facilitated by specialist palliative care staff over a six-month period. This paper reports the challenges, learning and benefits of using action learning sets to improve end-of-life care. Findings Action learning sets provide support which enables staff to implement changes to end-of-life care. Participants in the successful action learning sets were motivated to change practice and identified themselves as change agents. Management support was vital to allow participants the authority to implement changes to practice. Practical implications Facilitators need to gain participant and management commitment to the action learning process before the programme begins if they are to be successful in achieving changes to end-of-life care. Originality/value Hospices and other health care organisations work in partnership to deliver this programme, and this paper demonstrates how action learning sets can increase mutual understanding and communication between specialist and non-specialist end-of-life care settings.

'Quality End of Life Care for All' (QELCA): the national rollout of an end-of-life workforce development initiative.

BACKGROUND: Most people in the UK die in National Health Service (NHS) hospitals and it is essential that NHS employees are equipped to provide high-quality end-of-life care. Government policy encourages charities to work in partnership with the NHS and hospices have the necessary expertise to deliver education in end-of-life care. INTERVENTION: This article describes the national rollout and evaluation of the 'Quality End of Life Care for All' (QELCA) programme funded by the NHS National End of Life Care Programme. QELCA enables health professionals from acute NHS trusts to experience hospice care and empowers them to improve end-of-life care in their own practice settings. Seventeen acute NHS trusts took part with 21 hospices local to the trusts delivering the programme. Overall, 137 acute nurses participated in the programme, which involved 5 days at the hospice followed by 6 months of action-learning sets. OUTCOME: Participants gave concrete examples of improvements they made to end-of-life care and the majority of those who returned postcourse questionnaires believed that QELCA had changed their practice. Additional positive outcomes included better working relationships between acute trusts and hospices, and more appropriate referrals. DISCUSSION: Participants in QELCA progressed from passively identifying problems to actively problem solving and facilitating changes in practice. This attitudinal change has the potential to stimulate and sustain real change in end-of-life care in acute hospitals. QELCA is now being delivered to other members of the multidisciplinary team, including general practitioners.

Factors influencing the development of end-of-life communication skills: A focus group study of nursing and medical students.

BACKGROUND: Poor communication between health care professionals and dying patients and their families results in complaints about end-of-life care. End-of-life communication skills should be a core part of nursing and medical education but research suggests that qualified doctors and nurses find this a challenging area of practice. AIMS: The aim of this study was to explore factors influencing the development of end-of-life communication skills by nursing and medical students. DESIGN: A qualitative study comprising five focus groups. PARTICIPANTS: Second year undergraduate nursing (n=9 across 2 focus groups) and fourth year undergraduate medical students (n=10 across 3 focus groups) from a London University. FINDINGS: Barriers and facilitators influenced nursing and medical students' experience of communication with dying patients and their families in clinical practice. Extrinsic barriers included gatekeeping by qualified staff and lack of opportunity to make sense of experiences through discussion. Intrinsic barriers included not knowing what to say, dealing with emotional responses, wasting patients' time, and concerns about their own ability to cope with distressing experiences. Facilitating factors included good role models, previous experience, and classroom input. CONCLUSION: In addition to clinical placements, formal opportunities for reflective discussion are necessary to facilitate the development of students' confidence and skills in end-of-life communication. For students and mentors to view end-of-life communication as a legitimate part of their learning it needs to be specified written practice-learning outcome. Mentors and supervisors may require training to enable them to facilitate students to develop end-of-life communication skills.