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Background: Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods: The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results: Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion: This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues. [ABSTRACT FROM AUTHOR]

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept. [ABSTRACT FROM AUTHOR]

Background: Developments in digital health have the potential to create new opportunities for healthcare professionals support delivery of palliative care. Globally, many palliative care professionals used digital health innovations to support communication with staff, patients and caregivers, during COVID-19 pandemic. However, there is limited data about the views of palliative care professionals of using digital health to support communication during the pandemic. We aimed to describe how palliative care professionals used technology to support communication (multidisciplinary team working, education and with patients and family caregivers) during the COVID-19 pandemic. Method(s): UK based palliative care healthcare professionals completed an electronic questionnaire to describe their use of digital health, during the COVID-19 pandemic, to support (1) communication within the multidisciplinary team (MDT), (2) education and (3) to support communication with patients and carers. Results: Two hundred and thirty-four palliative care professionals participated. Most (n = 227, 97%) described an increase in their use of digital health, to support communication, since the start of the COVID-19 pandemic. We identified benefits and challenges for digital health communication, which we summarised into themes, including 'a new way of working', 'developing a new approach to learning' and 'impacting care'. Conclusion(s): Since the pandemic, palliative care professionals have increased their use of digital health to support communication in clinical practice. We have identified facilitators and barriers for future practice. Further work should identify the levels of support needed for organisations to ensure that digital health interventions are meaningfully used to help palliative care professionals effectively communicate with patients, caregivers and staff. [ABSTRACT FROM AUTHOR]

Background: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine physicians is unknown. Aim: To determine the prevalence of burnout and the degree of resilience among UK and Irish palliative medicine physicians during the COVID-19 pandemic, and associated factors. Design: Online survey using validated assessment scales assessed burnout and resilience: The Maslach Burnout Inventory Human Services Survey for Medical Personnel [MBI-HSS (MP)] and the Connor-Davidson Resilience Scale (CD-RISC). Additional tools assessed depressive symptoms, alcohol use, and quality of life. Setting/participants: Association of Palliative Medicine of UK and Ireland members actively practising in hospital, hospice or community settings. Results: There were 544 respondents from the 815 eligible participants (66.8%), 462 provided complete MBI-HSS (MP) data and were analysed. Of those 181/462 (39.2%) met burnout criteria, based on high emotional exhaustion or depersonalisation subscales of the MBI-HSS (MP). A reduced odds of burnout was observed among physicians who worked ⩽20 h/week (vs 31–40 h/week, adjusted odds ratio (aOR) 0.03, 95% confidence interval (CI) 0.002–0.56) and who had a greater perceived level of clinical support (aOR 0.70, 95% CI 0.62–0.80). Physicians with higher levels of depressive symptoms had higher odds of burnout (aOR 18.32, 95% CI 6.75–49.73). Resilience, mean (SD) CD-RISC score, was lower in physicians who met burnout criteria compared to those who did not (62.6 (11.1) vs 70.0 (11.3); p < 0.001). Conclusions: Over one-third of palliative medicine physicians meet burnout criteria. The provision of enhanced organisational and colleague support is paramount in both the current and future pandemics. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To increase your knowledge of the principles of moving and handling the body of a deceased child • To enhance your decision-making about the practical aspects of the care of children after death • To consider the development of policies and training to standardise care after death in children's hospices Background: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. Aim: The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. Method: An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. Findings: Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. Conclusion: Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death. [ABSTRACT FROM AUTHOR]

Background: Patients still receive non-beneficial treatments when nearing the end of life. Advance care planning (ACP) interventions have shown to positively influence compliance with end of life wishes. Hospital physicians seem to miss opportunities to engage in ACP, whereas patients visiting the outpatient clinic usually have one or more chronic conditions and are at risk for medical emergencies. So far, implemented ACP interventions have had limited impact. Structural implementation of ACP may be beneficial. We hypothesize that having ACP conversations more towards the end of life and involving the treating physician in the ACP conversation may help patient wishes and goals to become more concrete and more often documented, thus facilitating goal-concordant care. Aim: To facilitate timely shared decision making and increase patient autonomy we aim to develop an ACP intervention at the outpatient clinic for frail patients and determine the feasibility of the intervention. Methods: The United Kingdom's Medical Research Council framework was used to structure the development of the ACP intervention. Key elements of the ACP intervention were determined by reviewing existing literature and an iterative process with stakeholders. The feasibility of the developed intervention was evaluated by a feasibility study of 20 ACP conversations at the geriatrics and pulmonology department of a non-academic hospital. Feasibility was assessed by analysing evaluation forms by patients, nurses and physicians and by evaluating with stakeholders. A general inductive approach was used for analysing comments. The developed intervention was described using the template for intervention description and replication (TIDieR). Results: We developed a multidisciplinary timely undertaken ACP intervention at the outpatient clinic. Key components of the developed intervention consist of 1) timely patient selection 2) preparation of patient and healthcare professional 3) a scripted ACP conversation in a multidisciplinary setting and 4) documentation. 94.7% of the patients, 60.0% of the nurses and 68.8% of the physicians agreed that the benefits of the ACP conversation outweighed the potential burdens. Conclusion: This study showed that the developed ACP intervention is feasible and considered valuable by patients and healthcare professionals. [ABSTRACT FROM AUTHOR]

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

Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) (n = 50), Sweden (n = 129) and the UK (n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services' dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities. [ABSTRACT FROM AUTHOR]

Data collected by a lymphoedema service can be valuable to demonstrate the type of patients referred to a service and the complexity of its workload. Similar data collected across a range of services can paint a broader picture and be used to illustrate staffing and resource requirements. The feasibility of using a standardised tool for the collection of a minimum set of data by lymphoedema services was tested by the London Lymphoedema Community of Practice over a 1-month period. The project highlighted that a minimum data set tool was feasible and suggested areas for further consideration in the data collected. [ABSTRACT FROM AUTHOR]

Background: Day care services support older people living with long-term conditions (LTC's). Aims: The aims of the study were to determine outcomes in terms of loneliness and health-related quality of life for older people with LTCs attending day care services in the United Kingdom. Methods: Newly referred older people with LTCs to day care services in North West of England and Wales were invited to participate. The EQ-5D-3L and De Jong Loneliness questionnaires were completed at recruitment, 6 and 12 weeks. Results: Ninty-four older people (64% female), age range 65–99 years; mean number of LTCs 4.3 (range: 2–9) were recruited. About 52% lived alone and 36% lived in one of the 20% most deprived local authorities in England and Wales. Outcomes over 12 weeks were comparable for paid, blended, and for volunteer-led services. Conclusion: Following the Covid-19 pandemic, it is increasingly urgent to support older people with LTCs who may have lost physical and cognitive function during lockdown and to support their recovery. Our study suggests that volunteers can provide services and complement the care provided by paid staff, freeing up resources and enabling increasing numbers of older people to be supported. [ABSTRACT FROM AUTHOR]

Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: − 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: − 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: − 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS. [ABSTRACT FROM AUTHOR]

Background: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear. Aim: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT. Design: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim. Setting/participants: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge. Results: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites. Conclusions: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities. [ABSTRACT FROM AUTHOR]

The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home. [ABSTRACT FROM AUTHOR]

Background: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease. Aim: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease. Design: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale–symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches. Setting/participants: Breathless patients with advanced malignant and non-malignant disease. Results: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14–67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach’s alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met. Conclusion: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness. [ABSTRACT FROM AUTHOR]

Background: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. Aim: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. Design: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost. Informal care is valued at the replacement cost of care. Setting/participants: Data on utilisation were collected during 215 'after death' telephone interviews with a person centrally involved in the care in the last year of life of decedents who received specialist palliative care in three areas in Ireland with varying levels of specialist palliative care. Results: Mean total formal and informal costs in the last year of life do not vary significantly across the three areas. The components of formal costs, however, do vary across areas, particularly for hospital and specialist palliative care in the last 3 months of life. Conclusion: Costs in the last year of life for patients in receipt of specialist palliative care are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist palliative care inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in palliative care. [ABSTRACT FROM AUTHOR]

Background: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation. Methods: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. Results: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. Conclusions: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training. [ABSTRACT FROM AUTHOR]

Background: Enabling patients to die in their preferred place is important but achieving preferred place of death may increase the informal carer's risk into bereavement. Aim: To determine risk factors of family carers bereaved through cancer in Northern Ireland. Design: These results form part of a larger QUALYCARE-NI study which used postal questionnaires to capture quantitative data on carer's bereavement scores using the Texas Revised Inventory of Grief. Setting/participants: Participants were individuals who registered the death of a person between 1 December 2011 and 31 May 2012; where cancer (defined by ICD10 codes C00-D48) was the primary cause; where the deceased was over 18 years of age and death occurred at home, hospice, nursing home or hospital in Northern Ireland. Participants were approached in confidence by the Demography and Methodology Branch of the Northern Ireland Statistics and Research Agency. Those wishing to decline participation were invited to return the reply slip. Non-responders received a second questionnaire 6 weeks after initial invitation. Results indicated that risk factors positively influencing bereavement outcomes included patients having no preference for place of death and carers remaining in employment pre- or post-bereavement. In contrast, patients dying in hospital, carers stopping work, being of lower socio-economic status and close kinship to the deceased negatively affected bereavement scores. Family carers should be adequately supported to continue in employment; priority should be given to assessing the financial needs of families from lower socio-economic areas; and bereavement support should focus on close relatives of the deceased. [ABSTRACT FROM AUTHOR]

Background: Effective undergraduate education is required to enable newly qualified doctors to safely care for patients with palliative care and end-of-life needs. The status of palliative care teaching for UK medical students is unknown. Aim: To investigate palliative care training at UK medical schools and compare with data collected in 2000. Design: An anonymised, web-based multifactorial questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 medical schools in 2013 and compared with 23 medical schools (24 programmes) in 2000. Results: All continue to deliver mandatory teaching on ‘last days of life, death and bereavement’. Time devoted to palliative care teaching time varied (2000: 6–100 h, mean 20 h; 2013: 7–98 h, mean 36 h, median 25 h). Current palliative care teaching is more integrated. There was little change in core topics and teaching methods. New features include ‘involvement in clinical areas’, participation of patient and carers and attendance at multidisciplinary team meetings. Hospice visits are offered (22/24 (92%) vs 27/30 (90%)) although they do not always involve patient contact. There has been an increase in students’ assessments (2000: 6/24, 25% vs 2013: 25/30, 83%) using a mixture of formative and summative methods. Some course organisers lack an overview of what is delivered locally. Conclusion: Undergraduate palliative care training continues to evolve with greater integration, increased teaching, new delivery methods and wider assessment. There is a trend towards increased patient contact and clinical involvement. A minority of medical schools offer limited teaching and patient contact which could impact on the delivery of safe palliative care by newly qualified doctors. [ABSTRACT FROM AUTHOR]

Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement. Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway. [ABSTRACT FROM AUTHOR]

Aim To reflect on the methodological challenges of conducting a study exploring the effects on quality of life of being an informal carer for a person with palliative heart failure, as well as the factors that influence a carer's perception of caring. Background There are multi-faceted influences on the positive and negative effects of being a carer for a patient with palliative heart failure. By conducting a mixed methods study the aim was to examine and explore similarities and differences of the phenomenon of being a carer. Data sources Quantitative data obtained from the Family Quality of Life Questionnaire (FAMQOL), and qualitative data obtained from 14 interviews with informal carers of patients living with palliative heart failure. Review methods The study was conducted as part of a PhD, University of Sheffield, and the supervisory team reviewed the research process throughout the study. Discussion The study had a two-phase sequential mixed methods design. A sample of carers was recruited from heart failure nurse service caseloads in a UK urban setting. Carers were invited to complete the Family Quality of Life Questionnaire, a tool developed for carers of patients with heart failure. Participants were also asked to provide contact details if they were willing to be interviewed for the second phase of the study. Conclusion The study highlights important methodological considerations for recruiting carers. As the intention was to begin the analysis of the questionnaires before beginning the second phase of the study, the researcher was compelled to consider how integration was maintained and how to improve access to carers for research. Implications for practice The complexities associated with the population in this study led the researcher to use a pragmatic design to address research questions. When reflecting on the research and the challenges associated with recruiting to the quantitative phase of the study, the researcher used an iterative approach to meet the unfolding complexities. Such an approach could prove beneficial for mixed methods studies that aim to engage with hard to reach populations. [ABSTRACT FROM AUTHOR]

Background: Nurses are the professional group with the greatest contact with those at the end of life and their attitudes towards the care of the dying is important in care delivery. Aim: We investigated the relationship between student nurses’ attitudes towards care of the dying and (1) demographics, (2) course factors and (3) experience of caring for people who are dying. Design: A cross-sectional survey using the Frommelt’s Attitude Toward Care of the Dying scale to measure respondents’ attitudes. Setting/participants: Nursing students studying at a university in the United Kingdom. Results: A total of 567 completed questionnaires were returned, with 91.9% of respondents being classed as having a positive attitude towards care of the dying (Frommelt’s Attitude Toward Care of the Dying score ⩾65). In adjusted analysis, higher (more positive) Frommelt’s Attitude Toward Care of the Dying scores were associated with time on course and experience of caring for the dying. Third-year students had a score of 2.18 points greater than those in their first year (95% confidence interval: 0.36–4.01, p = 0.017). The adjusted differences in scores were 2.22 points greater for those who had prepared a dead body (95% confidence interval: 0.57–3.87, p = 0.008), 2.95 points greater for those who had cared for a dying patient (95% confidence interval: 1.09–4.08, p = 0.002) and 2.03 points greater for those who had cared for a dying relative or friend (95% confidence interval: 0.69–3.37, p = 0.003). Conclusion: The length of time in education and practical experience of caring for dying individuals are independently associated with positive attitudes towards care of the dying among student nurses. [ABSTRACT FROM AUTHOR]

The article presents a mixed methods study that aimed to design a best practice model to promote partnership practice between intellectual disability services and specialist palliative care. The study found that only few intellectual disability services and nursing homes reported contact with specialist palliative care services in Great Britain. The Phase I of the study showed that partnership practice was infrequent while in Phase 2, the issues of partnership in practice were addressed.

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available. [ABSTRACT FROM AUTHOR]

Schwartz Centre Rounds® aim to explore the human and emotional impact of everyday work by giving healthcare staff the opportunity to come together in a safe but open environment. We evaluated the experience of introducing Schwartz Centre Rounds in a UK hospice over 1-year using a mixed method approach. These rounds were reported as providing staff with a greater appreciation of the interprofessional approach. Individuals were more actively acknowledged by other colleagues as a result of contributions at rounds with an appreciation of a wider team, spanning the whole organisation. This appeared to relieve feelings of isolation and enhance a sense of shared purpose. Some staff chose not to attend but valued their contribution to the organisation without witnessing the emotional impact of hospice work. Our findings indicate that Schwartz Rounds offer staff the environment to explore the human element of their work and appear to improve interprofessional working. [ABSTRACT FROM AUTHOR]