Is well-becoming important for children and young people? Evidence from in-depth interviews with children and young people and their parents.

PURPOSE: This study explores how important well-becoming factors appear to be to children during childhood. We define well-becoming as the indicators which predict children and young people's future wellbeing and opportunities. The priority for this work was to explore whether well-becoming might be an important factor to include in outcome measures for children and young people. The inclusion of well-becoming indicators could ensure that opportunities to invest in promoting wellbeing in children's futures are not missed. METHODS: In-depth, qualitative interviews (N = 70) were undertaken with children and young people aged 6-15 years and their parents. Analysis used constant comparison and framework methods to investigate whether well-becoming factors were considered important by informants to children and young people's current wellbeing. RESULTS: The findings of the interviews suggested that children and young people and their parents are concerned with future well-becoming now, as factors such as future achievement, financial security, health, independence, identity, and relationships were identified as key to future quality of life. Informants suggested that they considered it important during childhood to aspire towards positive outcomes in children and young people's futures. CONCLUSION: The study findings, taken alongside relevant literature, have generated evidence to support the notion that future well-becoming is important to current wellbeing. We have drawn on our own work in capability wellbeing measure development to demonstrate how we have incorporated a well-becoming attribute into our measures. The inclusion of well-becoming indicators in measures could aid investment in interventions which more directly improve well-becoming outcomes for children and young people.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Healthcare professionals' perspectives of the management of people with palliative care needs in the emergency department of a UK hospital.

BACKGROUND: The Emergency Department (ED) is not always the optimal place for people with palliative care needs but is the most common route for treatment when urgent care is sought. The aim of this study,''REasons for PalLIative Care Admissions (REPLICA)' was to explore the perspectives of ED healthcare professionals of hospital admission or discharge via ED for palliative care patients. METHODS: This is a sequential mixed methods study comprising (i) quantitative descriptive analysis of Hospital Episode Statistics (HES) of palliative care patients (code Z51.5) who were admitted through ED in a West Midlands Hospital and for the rest of England; (ii) in-depth semi-structured interviews with 17 ED staff which were analysed using thematic content analysis. RESULTS: Over the four years (2013-2017), 430,116 people admitted through ED were identified with a Z51.5 diagnosis code, 0.6% (n = 2736) of whom were from the West Midlands Hospital. The most common reasons for palliative care patients' admission to hospitals across England were for care of chronic kidney disease, cancers and urinary tract infections. Five themes were elicited from the qualitative analysis: (1) Providing palliative care in ED is challenging, due to factors including lack of training in palliative care and the unsuitable environment. (2) Patients go to ED due to challenges in community management such as inappropriate referrals and no care plan in place. (3) Health system influences admission and discharge decisions, including bed availability and being unable to set up community services out-of-hours. (4) Discussion with patient about treatment and end of life care needs to be outside of ED whilst the patient is still well enough to express their wishes. (5) Improving services for patients with palliative care needs. Recommendations include short training sessions for ED staff and accessing palliative care professionals 24/7. CONCLUSIONS: A large number of palliative care patients visit ED and are admitted to hospital for care; there is an urgent need to prevent patients attending the hospital through the establishment of a coordinated and dedicated service to support palliative care patients in the community.

A think-aloud study of the feasibility of patients with end-stage organ failure completing the ICECAP-SCM.

BACKGROUND: The ICECAP-Supportive Care Measure (SCM) is a self-complete measure developed to inform economic decision making at the end-of-life. Previous research has demonstrated its feasibility in hospice and nursing home settings. This is the first study of its use with patients on the organ failure trajectory. AIM: To determine the feasibility of using the ICECAP-SCM with patients experiencing end-stage organ failure in a hospital setting. DESIGN: Participants were asked to 'think aloud' when completing the ICECAP-SCM, ICECAP-A and EQ-5D-5L measures. The interviews were transcribed verbatim and examined for errors in comprehension, retrieval, judgement, and response by five raters. Qualitative data were collected to explore reasons for errors in completing the measures and participants' views about the measures. SETTING/PARTICIPANTS: Sixty patients (with end-stage renal failure n = 18; end-stage heart failure n = 21; end-stage chronic obstructive pulmonary disease n = 21) participated. Senior clinicians applied prognostic criteria to determine eligibility. RESULTS: Participants reported that the measures were acceptable, clear, and easy to complete. Error rates in completing the measures were low (ICECAP-A = 3%,and ICECAP-SCM = 5.7% and EQ-5D-5L = 6.3%). There was some variation in responses between patients with different end-stage conditions, particularly those with symptom fluctuation. Some patients had not considered their end-of-life (i.e. advance care planning) and reported finding questions about this difficult to answer. CONCLUSION: It is feasible to use the ICECAP-SCM with patients with end-stage organ failure receiving care in hospital settings. This study provides evidence for researchers and policy makers involved in measuring end-of-life care globally. The ICECAP-SCM can be recommended for research with patients in end-stage organ failure to appropriately capture the broader benefits of end-of-life care.

"It is not a scientific number it is just a feeling": Populating a multi-dimensional end-of-life decision framework using deliberative methods.

The capability approach is potentially valuable for economic evaluation at the end of life because of its conceptualization of wellbeing as freedom and the potential for capturing outcomes for those at end of life and those close to persons at the end of life. For decision making, however, this information needs to be integrated into current evaluation paradigms. This research explored weights for an integrated economic evaluation framework using a deliberative approach. Twelve focus groups were held (38 members of the public, 29 "policy makers," seven hospice volunteers); budget pie tasks were completed to generate weights. Constant comparison was used to analyze qualitative data, exploring principles behind individuals' weightings. Average weights elicited from members of the general population and policy makers for the importance that should be given to close persons (vs. patients) were very similar, at around 30%. A "sliding scale" of weights between health gain and the capability for a good death resulted from the policy maker and volunteer groups, with increasing weight given to the capability for a good death as the trajectory got closer to death. These weights can be used in developing a more comprehensive framework for economic evaluation at end of life.

Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions.

Methods for measuring outcomes suitable for economic evaluations of health and care interventions have primarily focused on adults. The validity of such methods for children and young people is questionable in areas including the outcome domains measured and how they are measured and valued, with most existing measures narrowly focusing on health. Novel methods for assessing benefits beyond health by focusing on a person's capability have also concentrated on adults to date. This paper aims to set out the rationale for capability measures in children and young people. It argues for the need to expand the evaluative space beyond health functioning towards broader capabilities, with children and young people playing an integral role in capability measure development. Drawing from existing literature, specific challenges related to the identification, measurement, and valuation of capabilities in children and young people are also discussed. Finally, the practical implications for conducting economic evaluation when measuring and valuing capabilities at different stages across the life-course are illustrated. We develop an alternative framework based on conceiving capabilities as evolving across the life-course. This framework may also be helpful in thinking about how to model health outcomes across the life-course.

Spiritual care provision to end-of-life patients: A systematic literature review.

AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice. BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team. DESIGN: Systematic literature review, following PRISMA guidelines. METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted. Results Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship); and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses. CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved. RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.

Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for use in economic evaluation.

BACKGROUND: End-of-life care affects both the patient and those close to them. Typically, those close to the patient are not considered within economic evaluation, which may lead to the omission of important benefits resulting from end-of-life care. AIM: To develop an outcome measure suitable for use in economic evaluation that captures the benefits of end-of-life care to those close to the dying. DESIGN: To develop the descriptive system for the outcome measure, in-depth qualitative interviews were conducted with the participants and constant comparative analysis methods were used to develop a descriptive system for the measure. PARTICIPANTS: Twenty-seven individuals bereaved within the last 2 years or with a close-person currently receiving end-of-life care were purposively recruited into the study. Participants were recruited through newsletters, adverts, snowball sampling and a local hospice. RESULTS: Twenty-seven individuals were recruited. A measure of capability with six attributes, each with five levels, was developed based on themes arising from the analysis. Attributes comprise the following: good communication with services, privacy and space to be with the loved one, emotional support, practical support, being able to prepare and cope and being free from emotional distress related to the condition of the decedent. CONCLUSION: This measure is designed to capture the benefits of end-of-life care to close-persons for use in economic evaluation. Further research should value the measure and develop methods for incorporating outcomes for close-persons into economic evaluation.

'The ICECAP-SCM tells you more about what I'm going through': A think-aloud study measuring quality of life among patients receiving supportive and palliative care.

BACKGROUND: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. AIM: To determine the feasibility of completing ICECAP-Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. DESIGN: Participants were asked to 'think aloud' while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. SETTING/PARTICIPANTS: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). RESULTS: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. CONCLUSIONS: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.

Hospital care following emergency admission: a critical incident case study of the experiences of patients with advanced lung cancer and Chronic Obstructive Pulmonary Disease.

AIMS AND OBJECTIVES: To explore the experiences of patients with advanced Chronic Obstructive Pulmonary Disease (COPD) and lung cancer, their carers and healthcare professionals following emergency admission to acute care hospital. BACKGROUND: Emergency admissions of people with lung cancer and COPD have increased and there is global concern about the number of patients who die in hospital. The experience of patients with advanced lung cancer and COPD admitted to hospital as an emergency when nearing the end of life has not previously been investigated. DESIGN: Qualitative critical incident case study. METHODS: Semistructured interviews were conducted with 39 patients (15 with COPD and 24 with lung cancer), 20 informal carers and 50 healthcare professionals, exploring patients' experiences of emergency hospital admission. Interviews took place after admission and following discharge. Participants nominated relatives and healthcare professionals for interview. Data were analysed thematically. RESULTS: Patients were satisfied with their 'emergency' care but not the care they received once their initial symptoms had been stabilised. The poorer quality care they experienced was characterised by a lack of attention to their fundamental needs, lack of involvement of the family, poor communication about care plans and a lack of continuity between primary and secondary care. A conceptual model of 'spectacular' and 'subtacular' trajectories of care was used to relate the findings to the wider context of health care provision. CONCLUSION: The complex nature of illness for patients with advanced respiratory disease makes emergency hospital admissions likely. Whilst patients (with COPD and lung cancer) were satisfied with care in the acute 'spectacular' phase of their admission, more attention needs to be given to the continuing care needs of patients in the 'subtacular' phase. RELEVANCE TO CLINICAL PRACTICE: This is the first study to explore the patient experience of acute care following an emergency admission and identifies where there is potential for care to be improved.

A team approach to recruitment in hospice research: engaging patients, close people and health professionals.

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting.

"It's been quite a challenge": redesigning end-of-life care in acute hospitals.

OBJECTIVE: This paper reports the findings of an interview-based study undertaken to investigate the introduction of end-of-life (EoL) care pathways in three acute trusts, as part of a larger project examining service redesign. The aim was to examine the barriers to and facilitators of change. METHOD: Twenty-one in-depth qualitative interviews were conducted with staff working in three National Health Service (NHS) acute hospital trusts. These staff members were involved in end-of-life care, and their accounts were analyzed to identify the key issues when introducing service changes in these settings. RESULTS: Thematic analysis revealed five major themes-two of which, leadership and facilitation, and education and training, indicate what needs to be in place if end-of-life care pathways are to be adopted by staff. However, the remaining three themes of difficult conversations, diagnosing dying, and communication across boundaries highlight particular areas of practice and organization that need to be addressed before end-of-life care in hospitals can be improved. SIGNIFICANCE OF RESULTS: Organization of end-of-life care in acute hospitals is challenging, and care pathways provide a degree of guidance as to how services can be delivered. However, even when there is effective leadership at all levels of an organization and an extensive program of education for all staff support the use of care pathways, significant barriers to their introduction remain. These include staff anxieties concerning diagnosing dying and discussing dying and end-of-life care planning with patients and their families. It is hoped these findings can inform the development of the proposed new care plans which are set to replace end of life care pathways in England.

The impact of a 'Critical Moments' workshop on undergraduate nursing students' attitudes to caring for patients at the end of life: an evaluation.

AIMS AND OBJECTIVES: To evaluate the impact of an educational workshop on nursing students' attitudes to caring for dying patients. BACKGROUND: The quality of end-of-life care education provided in preregistration nursing programmes has been criticised. The lack of attention to the emotional content results in nursing students feeling ill-prepared to care for the dying and bereaved. This article reports the findings of a study conducted to evaluate the impact of an educational workshop on undergraduate nursing students' attitudes to caring for patients at the end of life. DESIGN: A pre- and postintervention survey was used to determine nursing students' attitudes and feelings concerning end-of-life care prior to and following their involvement in an educational workshop. METHODS: Third-year undergraduate nursing students completed two questionnaires incorporating the Frommelt Attitude Toward Care of the Dying Scale, before and after attending a 'Critical Moments' workshop. RESULTS: The data revealed a statistically significant increase in positive attitudes to end-of-life care amongst the respondents. Free text responses confirmed the development of positive attitudes and indicated that the workshop was regarded as a valuable learning opportunity. CONCLUSIONS: Workshops that use case studies based on 'real-life' episodes of end-of-life care can provide an effective learning opportunity that significantly improves the attitudes of nursing students to caring for the dying. RELEVANCE TO CLINICAL PRACTICE: Identifying emotional labour is an important stage in the development of emotionally intelligent nurses. It may reduce the risk of occupational stress, burnout and potential withdrawal from nursing practice in the longer term. Timing, expert facilitation and peer support are important considerations for an educational workshop that aims to enable nurses to remain healthy whilst delivering high-quality care to patients and their relatives near the end of life.

Cultural and social attitudes towards COVID-19 vaccination and factors associated with vaccine acceptance in adults across the globe: A systematic review.

OBJECTIVES: To identify and synthesise evidence on cultural and social attitudes towards coronavirus disease 2019 (COVID-19) vaccination and factors associated with vaccine acceptance in the adult population. DESIGN: Systematic review. DATA SOURCES: Six electronic databases were searched (CINAHL, Coronavirus Research Database, Embase, MEDLINE, Nursing and Allied Health Database, and Web of Science Core Collection). Additional studies were identified through Google Scholar and hand searching the reference lists of all studies included in the review. METHOD: The searches were conducted to identify all relevant studies published in English, from December 2019 to December 2021. The Critical Appraisal Skills Programme (CASP) and Appraisal tool for Cross-Sectional Studies (AXIS tool) were used to critically appraise the quality of included studies. Data were extracted and synthesised narratively. RESULTS: 1260 records were identified, of which 38 studies were included in the review. Low COVID-19 vaccination acceptance rates were found among young people, females, non-medical students, and even some healthcare workers, which were associated with misinformation obtained through social media platforms, unknown side effects, questionable conspiracy theories, and doubts about efficacy and safety. Higher COVID-19 vaccination acceptance rates were due to recommendations from healthcare professionals and government sources, and the perceived increased risk of contracting COVID-19. CONCLUSION: COVID-19 vaccine acceptance varies across the globe. To increase the acceptance rate of the COVID-19 vaccine, public health education programmes should be promoted effectively and target specifically the groups who are most hesitant to receive the vaccine such as young people, females, and non-medical students. Vaccine hesitancy among healthcare workers can affect vaccination rates as the majority of the population views them as a trustworthy source for vaccine-related knowledge. Staff training is important to enhance their confidence and communication skills in providing information about COVID-19 vaccination to combat the misunderstanding of the public and encourage vaccine uptake. PROSPERO REGISTRATION NUMBER: CRD42021248016.

"Palliative care is so much more than that": a qualitative study exploring experiences of hospice staff and bereaved carers during the COVID-19 pandemic.

Background: The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal care support services and increased the burden on many carers taking on the caring role for the first time. We aimed to explore decision-making about the place of care during the COVID-19 pandemic and the impact on experience from the perspectives of carers and hospice staff caring for people at the end-of-life. Methods: A qualitative study using virtual interviews was conducted between October 2020 and April 2021. Data were analyzed thematically using framework analysis, an analytical framework that enables qualitative research to be organized into defined themes derived from the research question. Findings were presented to stakeholders in policy roundtables between March 2022 and March 2023 and discussed collaboratively with staff, stakeholders, and the public to inform policy and practice change. Findings: A total of 37 participants (15 bereaved carers and 22 staff) were recruited via hospice services in England and Scotland. Four key themes were identified: (1) changing preferences relating to decision-making about the place of care and the impact at the time of death and into bereavement; (2) missed opportunities related to not being there, not having others around, and being robbed of memory-making; (3) the lone carer during a period of high intensity and reduced home support; (4) process vs. person-centered care resulting from changing rules and restrictions and prioritization of regulations over essential palliative care. Conclusion: The study provides valuable global implications for all involved in end-of-life care. Despite great efforts to provide dignified, quality care, palliative care during the pandemic changed, focusing on essential 'physical care'. The psychological suffering experienced by staff and carers may need longer-term support mechanisms put in place, which will benefit from a public health approach. Policymakers should consider improving carer identification and resources for wider end-of-life care education to support the needs of carers, health and social care staff, and citizens.

'Out of sync': a qualitative investigation of patients' experiences of atrial fibrillation and perceptions of weight management.

OBJECTIVES: To explore ways to enhance the design of risk factor management and weight-loss services for people with overweight/obesity and atrial fibrillation (AF). BACKGROUND: AF is the most common cardiac arrhythmia, with serious consequences for health and quality of life. Some evidence indicates weight reduction in people with AF and overweight/obesity may improve symptoms. This population may require additional support with weight management due to factors associated with ageing and health. DESIGN: Qualitative investigation based on semi-structured interviews. METHODS: 12 adult participants (4 female, 8 male) with diagnosed AF and a current or previous body mass index >27 kg/m2 were recruited at a large tertiary cardiac referral centre in southern England between September 2020 and January 2021. Participants completed quality of life and AF symptom questionnaires using Think-Aloud technique and semi-structured interviews relating to their weight management experiences, needs and preferences. Interviews were audio recorded and analysed thematically using the Capability, Opportunity and Motivation-Behaviour model as a theoretical framework. RESULTS: Three main themes were identified. Being out of rhythm explores the psychological and physical impact of AF on weight management; doing the right thing discusses participants' weight management experiences and broaching the subject explores participants' perspectives on weight management conversations with clinicians. CONCLUSIONS: There was dissatisfaction with the weight management advice received from healthcare professionals including cardiologists. Participants wanted open, non-judgemental discussion of cardiac health implications of overweight/obesity supported by referral to weight management services. Improved communication including research findings regarding the benefits of weight loss as a factor in AF management might increase motivation to adhere to weight-loss advice in this population.

The Experiences of Informal Carers during the COVID-19 Pandemic: A Qualitative Systematic Review.

OBJECTIVES: To identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic. DESIGN: A qualitative systematic literature review. DATA SOURCES: Eight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources. STUDY SELECTION: Eligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English. DATA EXTRACTION AND SYNTHESIS: Retrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings. RESULTS: Fourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers' wellbeing and ability to cope. CONCLUSION: Carers' needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.

Trajectories of end-of-life care in the emergency department.

STUDY OBJECTIVE: The emergency department (ED) is the gateway to the hospital setting. Despite the intentions from the end-of-life care strategy in the UK to improve care provision, the ED has increasingly become the access site for end-of-life support. Little attention has been given to this aspect of the work of the ED, even as the quality of end-of-life care in hospitals has become the subject of increasing concerns. We explore end-of-life care in the ED and provide an understanding of how care is delivered to the dying, deceased and bereaved in the emergency setting. METHODS: Observation was carried out in a large urban ED during 12 months. This was complemented by detailed interviews with emergency staff, patients diagnosed with a terminal condition, who had visited the ED in the previous 6 months, and their relatives. Data were analyzed thematically, following the normal conventions of ethnographic research. RESULTS: Two distinct trajectories of end-of-life care were identified in the ED; the spectacular and the subtacular. Patients and family members experiencing end-of-life care in the ED have distinctly different care because of the nature of these 2 trajectories, frequently resulting in dissatisfaction for staff and distress and frustration for patients and their relatives. CONCLUSION: The ED is priority driven, focused on resuscitation and the prolongation of life. As a result of the consuming nature of the spectacular death, a reluctance to build relationships with the dying, and a lack of educational support, the care needs of patients in the subtacular trajectory are somewhat neglected. These trajectories can be used to identify the shortfalls in end-of-life care in the ED and raise serious concerns for policy in regard to staffing, resources, and professional development.

Professional tears: developing emotional intelligence around death and dying in emergency work.

AIMS AND OBJECTIVES: This paper explores how emergency nurses manage the emotional impact of death and dying in emergency work and presents a model for developing expertise in end-of-life care delivery. BACKGROUND: Care of the dying, the deceased and the bereaved is largely conducted by nurses and nowhere is this more demanding than at the front door of the hospital, the Emergency Department. Whilst some nurses find end-of-life care a rewarding aspect of their role, others avoid opportunities to develop a relationship with the dying and bereaved because of the intense and exhausting nature of the associated emotional labour. DESIGN: Qualitative study using unstructured observations of practice and semistructured interviews. METHODS: Observation was conducted in a large Emergency Department over 12 months. We also conducted 28 in-depth interviews with emergency staff, patients with terminal illnesses and their relatives. RESULTS: Emergency nurses develop expertise in end-of-life care giving by progressing through three stages of development: (1) investment of the self in the nurse-patient relationship, (2) management of emotional labour and (3) development of emotional intelligence. Barriers that prevent the transition to expertise contribute to occupational stress and can lead to burnout and withdrawal from practice. CONCLUSIONS: Despite the emotional impact of emergency deaths, nurses who invest their therapeutic self into the nurse-patient relationship are able to manage the emotional labour of caring for the dying and their relatives through the development of emotional intelligence. They find reward in end-of-life care that ultimately creates a more positive experience for patients and their relatives. RELEVANCE TO CLINICAL PRACTICE: The emergency nurse caring for the dying patient is placed in a unique and privileged position to make a considerable impact on the care of the patient and the experience for their family. This model can build awareness in managing the emotive aspects involved in care delivery and develop fundamental skills of nursing patients near the end of life.

Close-Person Spill-Overs in End-of-Life Care: Using Hierarchical Mapping to Identify Whose Outcomes to Include in Economic Evaluations.

BACKGROUND: Guidelines for economic evaluations often request that costs and outcomes beyond the patient are captured; this can include carers and also other affected parties. End-of-life care is one context where impacts of care spill over onto those other than patients, but there is little evidence about who should be included within economic evaluations. OBJECTIVE: The purpose of this article was to examine (1) how many people are close to those at the end of life (2); their characteristics; and (3) what influences the network size at the end of life. METHODS: In-depth interviews were conducted with 23 participants who were either recently bereaved or had somebody close to them currently receiving end-of-life care. Interviews were used in conjunction with hierarchical mapping to explore the network size and composition and influences upon these networks. Interviews were transcribed verbatim. Descriptive statistics were used to analyse the hierarchical maps and this information was combined with a constant comparative analysis of the qualitative data. RESULTS: On average, close-person networks at the end of life contained eight individuals, three of whom were rated as being 'closest'. These were typically family members, although in a small number of cases non-family members were included amongst the closest individuals. There was variation in terms of network composition. Qualitative analyses revealed two key influences on network size: death trajectory (those with cognitive problems/diseases towards the end of life had smaller networks) and family size (larger families had larger networks). CONCLUSIONS: The findings of this article have important implications for researchers wishing to include those affected by end-of-life care in an economic evaluation. Focussing on the three closest individuals would be a key starting point for economists seeking to capture spill-overs, whilst a truly societal perspective would require looking beyond proximal family members. This article further discusses the implications of including close persons in economic evaluations for decision makers.