BackgroundApproximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.MethodsWe integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.ResultsThree categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.ConclusionsThe needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

Background: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. Aim: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. Design: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. Setting/participants: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations. Results: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% ( n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. Conclusions: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation.

ObjectivesTo explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.MethodsFour electronic databases were searched—PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms ‘delirium’, ‘terminal restlessness’ or ‘agitated restlessness’ combined with ‘carer’ or ‘caregiver’ or ‘family’ or ‘families’. Thirty‐three papers met the inclusion criteria and remained in the final review.ResultsPapers focused on (i) caregiver experience—distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role—detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support—information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.ConclusionHigh levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver–patient relationship can be re‐established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd.

BackgroundComplex need for patients with a terminal illness distinguishes those who would benefit from specialist palliative care from those who could be cared for by non-specialists. However, the nature of this complexity is not well defined or understood. This study describes how health professionals, from three distinct settings in the United Kingdom, understand complex need in palliative care.MethodsSemi-structured qualitative interviews were conducted with professionals in primary care, hospital and hospice settings. Thirty-four professionals including doctors, nurses and allied health professionals were recruited in total. Data collected in each setting were thematically analysed and a workshop was convened to compare and contrast findings across settings.ResultsThe interaction between diverse multi-dimensional aspects of need, existing co-morbidities, intractable symptoms and complicated social and psychological issues increased perceived complexity. Poor communication between patients and their clinicians contributed to complexity. Professionals in primary and acute care described themselves as ‘generalists’ and felt they lacked confidence and skill in identifying and caring for complex patients and time for professional development in palliative care.ConclusionsComplexity in the context of palliative care can be inherent to the patient or perceived by health professionals. Lack of confidence, time constraints and bed pressures contribute to perceived complexity, but are amenable to change by training in identifying, prognosticating for, and communicating with patients approaching the end of life.Electronic supplementary materialThe online version of this article (10.1186/s12904-017-0259-z) contains supplementary material, which is available to authorized users.

Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This meta-review applied a structured search of ten databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 publications. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described in studies within reviews. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making (13%), information provision or management (13%) and communication (9%). Across all reviews, mostly positive impacts were reported on education, information sharing, decision-making, communication and costs. Impacts on quality of life and physical and psychological symptoms were inconclusive. Applying AMSTAR 2 criteria, most reviews were judged as low quality as they lacked a protocol or did not consider risk of bias, so findings need to be interpreted with caution.

This experiment examined the effects of two discrete negative emotions, fear and anger, on selective attention. A within-subjects design was used, and all participants (N = 98) experienced the control, anger, and fear conditions. During each condition, participants viewed a film clip eliciting the target emotion and subsequently completed a flanker task and emotion report. Selective attention costs were assessed by comparing reaction times (RTs) on congruent (baseline) trials with RTs on incongruent trials. There was a significant interaction between emotion condition (control, anger, fear) and flanker type (congruent, incongruent). Contrasts further revealed a significant interaction between emotion and flanker type when comparing RTs in the control and fear conditions, and a marginally significant interaction when comparing RTs in the control and anger conditions. This indicates that selective attention costs were significantly lower in the fear compared to the control condition and were marginally lower in the anger compared with the control condition. Further analysis of participants reporting heightened anger in the anger condition revealed significantly lower selective attention costs during anger compared to a control state. These findings support the general prediction that high arousal negative emotional states inhibit processing of nontarget information and enhance selective attention. This study is the first to show an enhancing effect of anger on selective attention. It also offers convergent evidence to studies that have previously shown an influence of fear on attentional focus using the global-local paradigm.

Background: COVID-19 has directly and indirectly caused high mortality worldwide. Aim: To explore patterns of mortality during the COVID-19 pandemic and implications for palliative care, service planning and research. Design: Descriptive analysis and population-based modelling of routine data. Participants and setting: All deaths registered in England and Wales between 7 March and 15 May 2020. We described the following mortality categories by age, gender and place of death: (1) baseline deaths (deaths that would typically occur in a given period); (2) COVID-19 deaths and (3) additional deaths not directly attributed to COVID-19. We estimated the proportion of people who died from COVID-19 who might have been in their last year of life in the absence of the pandemic using simple modelling with explicit assumptions. Results: During the first 10 weeks of the pandemic, there were 101,614 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220%, while home and hospital deaths increased by 77% and 90%, respectively. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged ⩾ 75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 22% (13%–31%) of COVID-19 deaths occurred among people who might have been in their last year of life in the absence of the pandemic. Conclusion: The COVID-19 pandemic has led to a surge in palliative care needs. Health and social care systems must ensure availability of palliative care to support people with severe COVID-19, particularly in care homes.

GPs are identifying patients for anticipatory and palliative care more equitably across the different disease trajectories and earlier in the disease process than they were previously identifying patients specifically for palliative care. However, many patients still lack care planning, particularly those dying with organ failure.