End-of-life care in the patient's home.

BACKGROUND: Providing end-of-life care in a patient's home is challenging, especially if the nurse is from a different ethnic background from the patient. Evidence shows that people from an ethnic minority background often experience poorer end-of-life care due to care providers not understanding their care needs. AIM: To explore the experiences of community nursing staff caring for patients with an ethnic minority background at the end of their life. METHOD: Using a qualitative descriptive approach, 16 semi-structured interviews were conducted and the data was thematically analysed. FINDING: Participants dealt with large tight-knit families, paternalism and controlling behaviours. There was a mistrust of Western palliative medicine. Language barriers and challenges were faced by the nursing staff, resulting in difficult conversations with the families. Different levels of the nursing staff's spiritual/cultural competencies were also identified. The COVID-19 pandemic intensified the challenges. CONCLUSION: This research has shed light on the challenges of individualising end-of-life care in a culturally diverse community in the UK. The nursing staff's cultural/spiritual competencies were challenged.

Developing a clinical academic career pathway in a Community and Mental Health NHS Trust.

Background: Despite growing evidence of the impact that clinical academic (CA) staff have on patient care and clinical practice, there are disproportionately low numbers of nurses, allied health professionals (AHPs) and other healthcare professionals in CA joint roles, compared to their medical colleagues. Aim: To describe the initial development of a CA career pathway for nurses, AHPs and other healthcare professionals in a Community and Mental Health NHS Trust. Methods: Kotter's 8-Step Change Model was used to expand opportunities and research culture across an NHS Trust. Results: A variety of capacity and capability initiatives at different academic levels were created to support CA development and to complement those available externally. These opportunities were underpinned by a research and development strategy, senior leadership buy-in, manager and clinical staff support, and targeted organisation-wide communication. Conclusion: The ongoing development of innovative CA opportunities in the Trust, alongside greater support for staff interested in pursuing CA careers, has resulted in a growing number of individuals successful in developing as CAs. This has led to a growth in research culture in the organisation and a greater understanding of what CA staff can bring to patient care, the clinical service and the wider organisation.

Emergency trauma care during the COVID-19 pandemic: A phenomenological study of nurses' experiences.

OBJECTIVE: This study aimed to explore nurses' experiences in delivering emergency trauma care during the COVID-19 pandemic at a level I trauma centre in Saudi Arabia. METHODS: A qualitative, descriptive phenomenological design was utilised, in which face-to-face, unstructured interviews were carried out with emergency and trauma nurses at a level I trauma centre in Saudi Arabia. The study included nine registered emergency and trauma nurses who were interviewed twice from February to April 2021. The collected data were analysed using Colaizzi's descriptive phenomenological method. RESULTS: The analysis of the data revealed an overarching theme that was about the inevitable change on the ground due to the pandemic and two primary themes, each containing two subthemes: 1 dealing with an interrupted path of care; 1.1 experiencing additional complexity; 1.2 encountering extra demands; 2 optimising the path of care; 2.1 modifying the steps; and 2.2 transforming the system. CONCLUSION: The COVID-19 pandemic imposed change on how trauma patients would be handled and treated. Nurses took an active and critical role in creating another form of change, which helped optimise the path of trauma care and accommodate urgent treatment needs of the injured patients.

Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review.

The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review was performed using PRISMA-ScR guidelines, identifying 15 relevant studies that fit the inclusion and exclusion criteria. There were no studies that specifically assessed how parents support their own well-being; however, the 15 identified studies did provide pertinent data secondary to the primary aims of each study. This resulted in the identification of 14 parent-initiated strategies which were grouped thematically into 4 categories: (i) social experience and peer support, (ii) information and management techniques, (iii) reframed perspectives and (iv) prioritising own needs. Overall, there was some evidence of parents initiating specific, individualised and useful strategies to supporting their well-being. Notably lacking was any empirical evaluation as to the effectiveness of these strategies and the wider factors associated with them. Further research is required to assess how parents support their personal well-being in daily life and how these strategies can be implemented alongside service-initiated support to ensure full parental well-being.

Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers.

OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.

'Four walls and a garden': Exploring the experiences of families affected by dementia during the COVID-19 pandemic.

INTRODUCTION: When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. AIMS: In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. METHODS: This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. FINDINGS: Six distinct themes were identified from the inductive analysis: Routine: 'busy life before lockdown'; Isolation: 'four walls and a garden'; Living with restrictions: 'treading on eggshells'; Discovering positives: 'you are in the same boat'; Easing lockdown: 'raring to go'; Heightened uncertainty: 'things have changed'. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. CONCLUSION: Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

'This Adds Another Perspective': Qualitative Descriptive Study Evaluating Simulation-Based Training for Health Care Assistants, to Enhance the Quality of Care in Nursing Homes.

Much of the UK's ageing population lives in care homes, often with complex care needs including dementia. Optimal care requires strong clinical leadership, but opportunities for staff development in these settings are limited. Training using simulation can enable experiential learning in situ. In two nursing homes, Health Care Assistants (HCAs) received training in clinical communication skills (Situation-Background-Assessment-Recommendation Education through Technology and Simulation, SETS: group training with an actor simulating scenarios); and dementia (A Walk Through Dementia, AWTD: digital simulation, delivered one-to-one). In this qualitative descriptive study, we evaluated the potential of this training to enhance HCAs' clinical leadership skills, through thematic analysis of 24 semi-structured interviews with HCAs (before/after training) and their managers and mentors. Themes were checked by both interviewers. HCAs benefitted from watching colleagues respond to SETS scenarios and reported greater confidence in communicating with registered healthcare professionals. Some found role-play participation challenging. AWTD sensitised HCAs to the experiences of residents with dementia, and those with limited dementia experience gained a fuller understanding of the disease's effects. Staffing constraints affected participation in group training. Training using simulation is valuable in this setting, particularly when delivered flexibly. Further work is needed to explore its potential on a larger scale.

Palliative care in Creutzfeldt-Jakob disease: looking back, thinking ahead.

Creutzfeldt-Jakob disease (CJD) is a rare and fatal neurodegenerative disease for which there is no cure. However, it is difficult to diagnose and is unique in that it is both a genetic and transmissible disease. The disease is characterised by symptoms of a rapidly progressive dementia. Palliation is the only treatment and early diagnosis is an important aspect in relation to gaining speedy access to palliative and end-of-life care services. People with CJD may be cared for in a diversity of settings including; general hospital wards, neurological units, hospices; care homes and in their own home. Management of physical and psychosocial symptoms and dealing with family bereavement is complex and challenging. Due to the complexity of the physical symptoms input from clinicians with palliative care expertise is an important consideration. Given transmission risk and the latent incidence of infection in the general population, following the emergence of variant CJD; plus the recent hypothesis of a potential relationship between immune responses to COVID-19 and the acceleration of preclinical or evident neurodegenerative disease, there is a need for renewed interest in research in this field. Over the past 20 years, many thousands of articles have been published on CJD. These have been predominately in the medical and science literature and very few publications have addressed the nursing care of persons and families dealing with CJD. There is a need for renewed interest in the management of the disease by supportive and palliative care services.

Ethical care during COVID-19 for care home residents with dementia.

The COVID-19 pandemic has had a devastating impact on care homes in the United Kingdom, particularly for those residents living with dementia. The impetus for this article comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient ethical values for delivering care to care home residents living with dementia during the pandemic was derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, well-being, safety, and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this article discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, well-being and personhood - of residents and staff - are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and Personal Protective Equipment, unclear data, and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued.

Examining the UK Covid-19 mortality paradox: Pandemic preparedness, healthcare expenditure, and the nursing workforce.

AIM: To examine the UK pandemic preparedness in light of health expenditure, nursing workforce, and mortality rates in and relation to nursing leadership. BACKGROUND: The Global Health Security Index categorized the preparedness of 195 countries to face a biological threat on a variety of measures, producing an overall score. The United States of America and the United Kingdom were ranked 1st and 2nd most prepared in 2019. METHOD: A cross-nation comparison of the top 36 countries ranked by Global Health Security Index score using a variety of online sources, including key data about each nation's expenditure on health and the nursing workforce, and compared these with mortality data for COVID-19. RESULTS: The extent of a country's pandemic preparedness, expenditure on healthcare and magnitude of the nursing workforce does not appear to impact mortality rates at this stage of the pandemic which is something of a paradox. CONCLUSION: It is important that arrangements for dealing with future global pandemics involve a range of agencies and experts in the field, including nurse leaders. IMPLICATIONS FOR NURSING: To achieve the best outcomes for patients, nurse leaders should be involved in policy forums at all levels of government to ensure nurses can influence health policy.

Advance care plans in dementia: user-centred design.

OBJECTIVES: Historically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life. ACP has been defined as a process of discussing and recording of wishes, values and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. The objective of this project was to involve people with dementia and their family carers in co-design of ACP guide and template to prepare for further study related to communication processes in ACP. METHODS: A user-centred design process cycle of development and review was undertaken by Dementia UK which involved people with dementia, family carers, Admiral Nurses and other key stakeholders in developing an ACP guide and template. RESULTS: Nine cyclical stages were undertaken to achieve the outcome of an ACP guide and template. CONCLUSION: Co-production using a user-centred design approach offers a structured and inclusive approach to developing ACP materials.Authors.

Investigation into attitudes towards older people with dementia in acute hospital using the Approaches to Dementia Questionnaire.

BACKGROUND: Health care professionals have poor recognition of cognitive impairment among older patients and often have difficulties in providing care for people with dementia in acute hospitals. There are also reported high levels of stigma and negative staff attitudes towards people with dementia. METHODOLOGY: A one-time survey of staff working on acute medical and orthopaedic wards of five District Health Boards in New Zealand using the 'Approaches to Dementia Questionnaire'; a 19-item Questionnaire that aims to capture two attitudinal domains (Hope and Person-Centredness), towards people with dementia. A total of 563 questionnaires were distributed. Data were analysed using R. RESULTS: Three hundred and four (53.99%) respondents completed the survey. Ninety-four of the respondents (31.1%) were aged 51 years or older, and nearly all (88.4%) were women. One hundred and sixty-four of the respondents (53.9%) were registered nurses, 10 were student nurses (3.3%), 24 (7.9%) were healthcare assistants, 70 (23.0%) were allied health professionals, 27 (8.9%) were doctors and 9 (3%) were pharmacists. The mean total score of 72.7 reflected positive attitudes overall on the part of the respondents. Allied health professionals, student nurses and pharmacists had high scores on both scales whilst healthcare assistants scored lowest on both scales. CONCLUSION: Overall, the Approaches to Dementia Questionnaire is a useful measure, but it can be difficult to differentiate between genuine attitudinal differences and confounding influences such as level of knowledge and education amongst such a diverse group of participants. Differences between staff may be considered as a reflection of the high level of direct care that is expected of some staff and not of others. Further, the Approaches to Dementia Questionnaire may not be the most appropriate measure to accurately understand attitudes to dementia care in acute environments; and that it more usefully reveals knowledge about dementia rather than attitudes related to real-time practice.

A training needs analysis of admiral nurses to facilitate advance care planning in dementia.

Education of health and social care professionals is essential in preparation to confidently and effectively support families affected by dementia to undertake advance care planning. This article describes a training needs analysis of Admiral Nurses, dementia specialists, in facilitating advance care planning for future care. METHODS: A questionnaire survey was completed by Admiral Nurses attending end-of-life care masterclasses in 2017 and 2018. Both quantitative (years registered as a nurse, years as an Admiral Nurse and subjective level of confidence in completing advance care plannings) and qualitative data (interventions perceived to increase confidence) were collected. FINDINGS: There were 75 completed responses (two incomplete returns). There was no correlation between levels of confidence and years registered as a nurse. However, there was a small positive correlation between confidence and number of years as an Admiral Nurse (r = 0.23; p < 0.05). Themes identified qualitatively to enhance practice were advanced communication skills, supervised practice, resources to frame conversations and a guide and template for advance care planning. CONCLUSION: Although Admiral Nurses are specialists in dementia, several educational initiatives could be employed to better enable them to support advance care planning for families affected by dementia. This training needs analysis is contributed towards developing an educational intervention for Admiral Nurses to improve advance care planning support.

Prison Nurses' Professional Identity.

In the United Kingdom, health and justice services nurses are a diverse group working across a range of contexts and settings such as police custody, sexual assault referral centers, young offenders' institutes, and prisons and probation. Recruitment and retention to the specialist field of health and justice services nursing, specifically prison nursing, is problematic in the United Kingdom. In this article, we consider the background to the current situation in prison nursing and summarize some of the existing literature and research relating to this specialty to raise, for discussion and debate, issues that are pertinent to the concept of professional identity and professionalism. Role definition, resilience and burnout, and education within prison nursing are identified in relation to the development of professional identity. It could be that professional identity is the missing link to recruitment and retention.

Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy.

In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.

Advance care planning in dementia: recommendations for healthcare professionals.

The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.

'And so I took up residence': The experiences of family members of people with dementia during admission to an acute hospital unit.

It is estimated that a quarter of acute hospital beds are in use by older people with dementia at any one time. Little empirical research has been carried out that has specifically examined the day-to-day input of family members into the care of people with dementia during an acute hospital admission. In this article, we present the results of analysis of interviews with 26 family members of people with dementia about their experiences of supporting an admission of a person with dementia to an acute hospital unit in New Zealand. For all family members, the desire to support the person with dementia during their admission was at the forefront and was their primary focus. The theme, 'And so I took up residence', exemplifies fully the experiences of all of the family member participants. This study provides evidence that family members are a resource that may be unrecognised, untapped and unsupported in the event of hospitalisation of people with dementia.

The challenges in caring for morbidly obese patients in Intensive Care: A focused ethnographic study.

BACKGROUND: Critically ill morbidly obese patients pose considerable healthcare delivery and resource utilisation challenges. However little is known about the care of these patients in intensive care. OBJECTIVE: To explore medical and nursing practices and attitudes in intensive care when caring for critically ill morbidly obese patients. METHODS: A focused ethnographic approach was adopted. Participant observation of care practices and interviews with intensive care doctors and nurses were undertaken over a four month period. Qualitative analysis was conducted using constant comparison. SETTING: An 18 bedded tertiary intensive care unit in New Zealand. PARTICIPANTS: Sixty-seven intensive care nurses and 13 intensive care doctors involved with the care and management of seven critically ill patients with a body mass index ≥40kg/m2. FINDINGS: Morbidly obese patients present significant physical and language challenges for intensive care practice. The physical shape of morbidly obese patients did not appropriately fit the different equipment used. Staff used specific knowledge of the patient's body size and shape to adapt care practices and keep patients safe and comfortable. There were also specific language challenges where staff expressed concern about what words were most appropriate to use to describe body mass when in the presence of morbidly obese patients. CONCLUSIONS: Bariatric care pathways need to be developed that use more suitable body measurements to inform the use of bariatric equipment. Intensive care staff need to engage in debate about what is acceptable, respectful, and appropriate language in the delivery of bariatric patient care.

Managing risk during care transitions when approaching end of life: A qualitative study of patients' and health care professionals' decision making.

BACKGROUND: Increasing importance is being placed on the coordination of services at the end of life. AIM: To describe decision-making processes that influence transitions in care when approaching the end of life. DESIGN: Qualitative study using field observations and longitudinal semi-structured interviews. SETTING/PARTICIPANTS: Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand. The Supportive and Palliative Care Indicators Tool was used to identify participants with advanced and progressive illness. Patients and family members were interviewed on recruitment and 3-4 months later. Four weeks of fieldwork were conducted in each site. A total of 40 interviews were conducted: 29 initial interviews and 11 follow-up interviews. Thematic analysis was undertaken. FINDINGS: Managing risk was an important factor that influenced transitions in care. Patients and health care staff held different perspectives on how such risks were managed. At home, patients tolerated increasing risk and used specific support measures to manage often escalating health and social problems. In contrast, decisions about discharge in hospital were driven by hospital staff who were risk-adverse. Availability of community and carer services supported risk management while a perceived need for early discharge decision making in hospital and making 'safe' discharge options informed hospital discharge decisions. CONCLUSION: While managing risk is an important factor during care transitions, patients should be able to make choices on how to live with risk at the end of life. This requires reconsideration of transitional care and current discharge planning processes at the end of life.