Lucy Selman

• BA, MPhil, PG Cert Pall Care, PhD
• Professor (Associate) at University of Bristol

The COVID-19 pandemic has been followed intensely by the global news media, with deaths and bereavement a major focus. The media reflect and reinforce cultural conventions and sense-making, offering a lens which shapes personal experiences and attitudes. How COVID-19 bereavement is reported therefore has important societal implications. We aimed to...

Preliminary results from a mixed methods national study of bereaved people’s experiences and the bereavement services supporting them. This report presents interim findings from the first 532 respondents to a national survey of people bereaved in the UK since 16 March 2020. For study details, see covidbereavement.com. Please cite as: Harrop E., F...

Background Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim To synthesise the evi...

Background At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods Mortality follow-back postal survey. Setting: Palliat...

Background The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions. Previous reviews have not comprehensively synthesised the evidence on the response of health and social care systems to mass bereavement events. Aim To...

Objectives Older people with kidney failure often have a limited range of treatment options, with few being well enough to receive a transplant. Instead, they either start dialysis or have ‘conservative kidney management’ (CKM). CKM involves care that focuses on managing the symptoms of kidney failure and maintaining quality of life in the absence...

Introduction The effective assessment of bereavement needs and outcomes is essential to deliver high-quality bereavement services. There is however limited evidence for child-specific grief measures.The Child Attitude to Grief (CAG) Scale is adapted from the Adult Attitude to Grief Scale (Sim et al.2014). The 9-item scale explores how a bereaved ch...

Background COVID-19 drastically affected healthcare services world-wide. In the UK, many cancer services were overwhelmed as oncology staff were reassigned, and cancer diagnoses and treatments were delayed. The impact of these pressures on end-of-life care for patients with advanced cancer and their relatives is not well understood. Methods Second...

Background Advance care planning can improve patient and family outcomes; however, minoritised ethnic communities experience access barriers. Co-production offers a way to design culturally appropriate information and support, but evidence is needed to understand its implementation in palliative care. Aim To explore and describe how two charities...

Background: Coronary artery bypass grafting (CABG) provides superior long-term outcomes to percutaneous coronary intervention (PCI) for complex multivessel coronary artery disease (CAD). People with chronic kidney disease (CKD) have increased prevalence of multivessel CAD, but also increased surgical risk. We investigated whether CKD predicted real...

Background Choosing to have dialysis or conservative kidney management is often challenging for older people with advanced kidney disease. While we know that clinical communication has a major impact on patients’ treatment decision-making, little is known about how this occurs in practice. The OSCAR study (Optimising Staff-Patient Communication in...

Background 30–40% of people require professional support to manage grief. During the pandemic, UK deaths increased by over 17% compared to the previous 5 years. Levels of unmet need persist and waiting times have increased. Greater availability of evidence-based bereavement support is needed. Aim To co-produce and evaluate an online bereavement su...

Background Following identification of barriers to living-donor kidney transplantation, and subsequent development of a multicomponent intervention, we undertook a feasibility trial of the intervention. Trial design Two-arm, parallel group, pragmatic, individually-randomised, controlled, feasibility trial, comparing the new intervention with usual...

Background Coronary artery bypass grafting (CABG) provides superior long-term outcomes to percutaneous coronary intervention (PCI) for multi-vessel coronary artery disease. People with chronic kidney disease (CKD) are at increased risk of multi-vessel coronary artery disease, and experience greater morbidity and mortality following acute coronary s...

Background Grieving is a natural process, and many people adjust with support from family and friends. Around 40% of people would benefit from additional input. Online bereavement support interventions may increase access to support. Evidence regarding their acceptability and effectiveness is emerging but needs to be synthesised. Aim To synthesise...

Background Reduced estimated glomerular filtration rate (eGFR) is associated with lower use of invasive management and increased mortality after acute coronary syndrome (ACS). The reasons for this are unclear. Methods A retrospective clinical cohort study was performed using data from the English National Institute for Health Research Health Infor...

Background Festivals play an important role in improving death and grief literacy, enabling members of the public to engage with these often-sensitive topics. Good Grief Weston festival was co-designed and delivered with the community in Weston-super-Mare, a coastal town in South-West England with high levels of socioeconomic disadvantage but rich...

Background The communication of poor prognosis from secondary to primary care helps to ensure that patients with life-limiting illness receive appropriate coordinated care in line with their preferences. However, little is known about this information-sharing process. Aim To determine how poor prognosis is communicated from secondary care to prima...

Background and Aims Chronic kidney disease (CKD) is common in the UK, especially amongst frail older people with multiple health problems. The survival benefit of kidney replacement therapy (KRT) for such patients is uncertain and the burdens significant, meaning patients make difficult decisions between planning for dialysis or opting for conserva...

Background and Aims For people over the age of 65 with comorbidities and/or poor performance status, and for patients over the age of 80, the choice between receiving conservative kidney management (CKM) or receiving dialysis can be complex, and involves weighing possible benefits, risks and effects on quality and length of life. Patients often rel...

Background and Aims For older people with kidney failure, especially those with comorbidities or poor performance status, the survival benefits of dialysis are uncertain and its quality of life impact greatest. Conservative kidney management (CKM) can be a beneficial alternative. However, there is significant variation in treatment rates among olde...

The full text is available here: https://doi.org/10.1080/15401383.2024.2348581 This article describes a novel methodology for involving the public in a creative co-produced project about grief, which invited bereaved people to work together to create a fictional story about loss and then reflect on the experience in focus groups. Devised by Crowde...

Background An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits. Aim To develop a...

Palliative care has evolved rapidly in recent years. Not only is the field dealing with an increasingly elderly and multi-morbid population, it is also addressing a wider variety of complex diagnoses such as heart failure, renal failure, advanced lung disease, frailty, and dementia. As part of our Challenging Cases series, the cases in this book no...

Background COVID-19 drastically affected healthcare services world-wide. In the UK, many cancer services were overwhelmed as oncology staff were reassigned, and cancer diagnoses and treatments were delayed. The impact of these pressures on end-of-life care for patients with advanced cancer and their relatives is not well understood. Methods Second...

Objectives ‘ Early’ specialist palliative care (SPC) has been shown to improve outcomes for patients with advanced cancer, yet patients are often referred late. ‘Enhanced supportive care’ (ESC) aims to facilitate earlier integrated supportive care for those with incurable cancer. This study aimed to explore clinicians’ understanding of ESC/SPC deli...

Introduction Grieving is a unique experience and people have different support needs and preferences. However, bereaved people experience significant difficulties getting the informal and formal support that they need, including limited knowledge of bereavement support options and how they can help, and a reluctance to seek help.1 2 Aim To develop...

Introduction The impact of challenging bereavement experiences during the COVID-19 pandemic on people’s longer-term ability to adjust and cope is unclear. Aim To describe the longer-term grief experiences of a cohort of people bereaved during the pandemic in the UK, including levels of indicated Prolonged Grief Disorder (PGD), support needs and re...

Objectives Patients with advanced illness and their family caregivers can be mutually supportive. However, what facilitates and/or restricts supportive relationships between patients and family caregivers in palliative care remains unclear. We aimed to identify key barriers to and facilitators of supportive relationships between people with advance...

During the COVID-19 pandemic, death, grief and bereavement became dominant news subjects. Understanding that media reportage both reflects and shapes the narratives, cultural ideas and experiences of readerships, we analysed UK online newspapers from Spring 2020 to understand the social discourse in the media at the time. The focus of this chapter...

Background: People with chronic kidney disease (CKD) have significantly higher morbidity and mortality following myocardial infarction (MI) than the general population. Despite this, they are less likely to receive invasive management and guideline-directed medications than those without kidney disease. It is unclear why this treatment variation ex...

Background The COVID-19 pandemic has been a devastating and enduring mass-bereavement event, with uniquely difficult sets of circumstances experienced by people bereaved at this time. However, little is known about the long-term consequences of these experiences, including the prevalence of Prolonged Grief Disorder (PGD) and other conditions in pan...

Background Good Grief Festival was originally planned as a face-to-face festival about grief and bereavement. Due to COVID-19, it was held online over 3 days in October 2020. Objective To evaluate the festival’s reach and impact. Design Pre/post evaluation Methods Pre-festival online surveys assessed reasons for attending and attitudes to bereav...

Background The COVID-19 pandemic has been a devastating and enduring mass-bereavement event, with uniquely difficult sets of circumstances experienced by people bereaved at this time. However, little is known about the long-term consequences of these experiences, including the prevalence of Prolonged Grief Disorder (PGD) and other conditions in pan...

Background: In the UK 1500 kidney transplants fail each year. 2% of living-donor transplants and 5% of deceased-donor transplants fail within a year of transplantation. Many decisions need to be made when a kidney transplant fails, including whether the transplant should be removed, and which immunosuppression medication should be stopped. There is...

Nearly all British children will be bereaved of someone close to them by the time they turn eighteen and, with the COVID-19 pandemic and world humanitarian crises across the news and social media, they are being exposed to more anxiety about death than ever before. There is a growing awareness that grief education needs to be embedded into the UK n...

This is the Supplementary File (additional material) that supports our article on grief education. It lists over fifty grief education teaching plans, teacher training programmes and other bereavement resources for schools. These fantastic materials could support mandatory grief education. We also give an overview the current curriculum in each UK...

Background Voluntary and community sector bereavement services are central to bereavement support in the UK. Aim To determine service providers’ perspectives on access to their support before and during the COVID-19 pandemic. Design Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement ser...

Background Ethical challenges (ECs) arise daily in the delivery of specialist palliative care, but there is limited evidence regarding the range and nature of ECs, with no evidence from Africa. Understanding these ECs is crucial to inform education and training and adequately support staff. Aim To explore and map the ethical challenges experienced...

Background There are multiple approaches to teaching clinical ethics in palliative care. What is not clear are the preferences of on-the-ground specialist palliative care providers (SPCPs) regarding which ethics topics to prioritise and the teaching methods to use. Understanding these is crucial in ensuring training programmes and continuing profes...

Introduction Millions became bereaved during the pandemic, with many facing challenges accessing support. Aims To describe the use and helpfulness of different types of support in a cohort of people bereaved during the pandemic in the UK. Methods A longitudinal survey of people bereaved during the pandemic over four time points. At 7- and 13-mont...

Introduction The COVID-19 pandemic has had a huge impact on all aspects of life. The high number of deaths and bereavements increased demand on already stretched services, whilst the unique circumstances caused by enforced social distancing meant that people bereaved at this time faced many additional challenges and potentially problematic grief tr...

We identified factors associated with higher levels of grief and support needs among 711 people bereaved during the COVID-19 pandemic in the UK (deaths 16 March 2020-2 January 2021). An online survey assessed grief using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0–36), and practical and...

Background During the COVID-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians. Methods...

Background: Family caregivers participate in decision-making in palliative care. Patients and family caregivers can have both similar and different preferences for care. However, what underpins concordance and/or discordance between patients and family caregivers in decision-making in palliative care is not well understood. Objectives: To identify...

The evaluation of public engagement health festivals is of growing importance, but there has been no synthesis of its practice to date. We conducted a systematic review of evidence from the evaluation of health-related public engagement festivals published since 2000 to inform future evaluation. Primary study quality was assessed using the Mixed Me...

Introduction Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is a UK advance care planning (ACP) initiative aiming to standardise the process of creating personalised recommendations for a person’s clinical care in a future emergency and therefore improve person-focused care. Implementation of the ReSPECT process across a large...

Background Voluntary and community sector bereavement services play are central to bereavement support in the UK. Aim To determine service providers’ perspectives on access to their support before and during the COVID-19 pandemic. Design Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavemen...

Introduction: A combination of punitive sentencing practices within ageing populations, compounded by the health challenges faced by people in prison, means that dedicated palliative care provision within prisons is a pressing requirement. However, evidence about exactly how quality palliative and end-of-life care is delivered in this environment...

Context: There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. Objectives: To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characterist...

Background The COVID-19 pandemic has been a devastating, mass bereavement event characterised by high levels of disruption to end-of-life, grieving and coping processes. Quantitative evidence is emerging on the effects of the pandemic on grief outcomes, but rich qualitative evidence on the lived experiences of people bereaved during these times is...

Background Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. Aim To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. Design Onl...

Background Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood. Objectives To identify key factors and/or processes which underpin concordance and/or...

Background The Covid-19 pandemic has caused c.131,000 excess deaths in the UK to date. During the pandemic, voluntary and community sector (VCS) bereavement services have played a central role in supporting the bereaved. We describe the impact on and response of these services to inform service development and policy. Methods Mixed-methods explana...

Background Good Grief Festival was planned as a face-to-face festival to engage the public in multi-disciplinary research about grief and bereavement. Due to COVID-19, the festival was held online over 3 days in October 2020. Aim To evaluate the festival’s reach and impact. Methods A pre/post evaluation was conducted via online surveys. Pre-festi...

Background The COVID-19 pandemic has had a detrimental impact on millions of people’s experiences of bereavement. Traumatic end-of-life experiences and disruptions to support networks increase chances of poor bereavement outcomes. Aim To examine grief and support needs, and identify associated risk factors. Methods Mixed-methods survey of people...

Background The COVID-19 pandemic has affected millions of people’s experiences of bereavement. We aimed to identify risk factors for grief and support needs. Methods Online survey of people bereaved in the UK (deaths 16 March 2020-2 January 2021), recruited via media, social media, national associations/organisations. Grief was assessed using the...

Introduction The Covid-19 pandemic has been a mass bereavement event, causing major disruption to end-of-life, grieving and coping processes. Based on their Dual Process Model (DPM), Stroebe and Schut have identified pandemic-specific risk factors for poor bereavement outcomes and categorised these in terms of disruptions to loss-oriented and resto...

Introduction Many children and young people have experienced the death of close family members during the Covid-19 pandemic, whilst also facing unprecedented disruption to their daily routines and support networks. Aims This study investigated their bereavement experiences and support needs as described by their parents/guardians. Method We disse...

The Covid-19 pandemic has been a devastating mass bereavement event, with measures to control the virus leading to unprecedented changes to end-of-life and mourning practices. In this review we consider the research evidence on the experiences of people bereaved during the pandemic. We summarise key findings reported in the first five publications...

Introduction In 2020 England moved to an opt‐out deceased donation law. We aimed to investigate the views of a mixed stakeholder group comprising people with kidney disease, family members and healthcare practitioners towards the change in legislation. We investigated the expected impacts of the new legislation on deceased‐donor and living‐donor tr...

The paper describes the experiences of 881 people bereaved during the COVID-19 pandemic in the UK, with data analysed using inductive thematic analysis followed by application of Stroebe and Schut's Dual Process Model as analytic lens. The paper includes data from two national surveys: The Bereavement during COVID-19 (BeCOVID) study and The UK CO...

Background: During the Covid-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians. Methods:...

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...

Introduction People dying in Britain spend, on average, 3 weeks of their last year of life in hospital. Hospital discharge presents an opportunity for secondary care clinicians to communicate to general practitioners (GPs) which patients may have a poor prognosis. This would allow GPs to prioritise these patients for Advance Care Planning. The obje...

The illustrated booklet Stillbirth, Neonatal Death and the Grief Journey was funded by the Elizabeth Blackwell Institute for Health Research and the Wellcome Trust Institutional Strategic Support Fund as part of a wider project on grief and baby loss. The booklet is a co-produced resource, based on research evidence from an NIHR study of perinatal...

Background While patient and public involvement (PPI) in clinical trials is beneficial and mandated by some funders, formal guidance on how to implement PPI is limited and challenges have been reported. We aimed to investigate how PPI is approached within a UK Clinical Trials Unit (CTU)’s portfolio of randomised controlled trials, perceived barrier...

Background Despite its ubiquity in academic research, the phrase ‘ethical challenge(s)’ appears to lack an agreed definition. A lack of a definition risks introducing confusion or avoidable bias. Conceptual clarity is a key component of research, both theoretical and empirical. Using a rapid review methodology, we sought to review definitions of ‘e...

Objectives: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement. Design: Online open national survey of adults bereaved in the UK from 16 March 2020-5 January 2021, recruited via media, social media, national associations and organisations. Settin...

Objectives: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement. Design: Online open national survey of adults bereaved in the UK from 16 March 2020-5 January 2021, recruited via media, social media, national associations and organisations. Settin...

Background To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life. Aim To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 with...

A living-donor kidney transplant (LDKT) is one of the best treatments for kidney failure. The UK’s LDKT activity falls behind that of many other countries, and there is evidence of socioeconomic inequity in access. We aimed to develop a UK-specific multicomponent intervention to support eligible individuals to access a LDKT. The intervention was de...

Abstract 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 an...

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 informa...

Background News media create a sense-making narrative, shaping, reflecting and enforcing cultural ideas and experiences. Reportage of COVID-related death and bereavement illuminates public perceptions of, and responses to, the COVID-19 pandemic. Aim We aimed to explore British newspaper representations of ‘saying goodbye’ before and after a COVID-...

Background COVID-19 represents a mass bereavement event, with 80,000+ excess UK deaths. The unprecedented clinical and social restrictions are potential risk factors for poor bereavement outcomes. This study investigates the bereavement experiences, support needs and support use of people bereaved during the pandemic. Methods Interim findings from...

Background Parents commonly ask about food allergy tests, to find a cause for their child’s eczema, yet the value of routine testing is uncertain. Objective To determine if a clinical trial comparing test‐guided dietary advice versus usual care, for the management of eczema, is feasible. Methods Children (>3 months and <5 years) with mild to seve...

Aim To explore parent and general practitioner (GP) understanding and beliefs about food allergy testing for children with eczema. Design and setting Qualitative interview study in UK primary care within the Trial of Eczema allergy Screening Tests feasibility trial. Participants Semi-structured interviews with parents of children with eczema taki...

Aims To inform and guide patient‐centred care for men with lower urinary tract symptoms (LUTS), by providing in‐depth qualitative evidence regarding men's perspectives on treatment decision‐making for LUTS. Methods An interview study of men recruited from 26 English urology departments. Purposive sampling captured surgical/nonsurgical treatment de...

Background: Lower urinary tract symptoms (LUTS) in men may indicate bladder outlet obstruction (BOO) or weakness, known as detrusor underactivity (DU). Severe bothersome LUTS are a common indication for surgery. The diagnostic tests may include urodynamics (UDS) to confirm whether BOO or DU is the cause, potentially reducing the number of people r...

Those who are bereaved during the current COVID-19 pandemic are subject to restrictions on funeral sizes and practices. We conducted a rapid review synthesising the quantitative and qualitative evidence regarding the effect of funeral practices on bereaved relatives’ mental health and bereavement outcomes. Searches of MEDLINE, PsycINFO, KSR Evidenc...

Background: Trial oversight is important for trial governance and conduct. Patients and/or lay members of the public are increasingly included in trial oversight committees, influenced by international patient and public involvement (PPI) initiatives to improve the quality and relevance of research. However, there is a lack of guidance on how to u...

Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence, and provide evidence-based recommendations and resources for hospital clini...