Christine Ingleton

• The University of Sheffield

Background On average, people will experience 2.28 hospital admissions in the last year of life with the likelihood of a hospital admission increasing in the last 2 weeks of life. Reducing hospital admissions has become a focus for high-income countries as they work to manage the financial implications of an ageing population. However, the circumst...

Background Research exploring patient experience of palliative care in the hospital setting has previously been limited to negative aspects of care. However, recent studies have shown that patients with palliative care needs experience benefits being in hospital. Little is known about how experiences of benefit and burden vary according to socio-de...

Objectives: Internationally, funders require stakeholder involvement throughout health technology assessment (HTA). We report successes, challenges, and lessons learned from extensive stakeholder involvement throughout a palliative care case study that demonstrates new concepts and methods for HTA. Methods: A 5-step “INTEGRATE-HTA Model” developed...

Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integra...

Background A wide range of organisational models of palliative care exist. However, decision makers need more information about which models are likely to be most effective in different settings and for different patient groups. Aim To identify the existing range of models of palliative care that have been evaluated, what is already known and what...

Background It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. Aim To undertake a systematic review...

Background Internationally, stakeholder involvement is recognised as adding value throughout the Health Technology Assessment (HTA) process. Stakeholders in seven countries took part in a European project, “INTEGRATE-HTA” which developed methods for more integrated, patient-centred approaches to HTA for complex interventions. The methods were appli...

Background Government policy is a fundamental component of initiating change to improve the provision of palliative care at a national level. The World Health Organisation’s recognition of palliative care as a basic human right has seen many countries worldwide develop national policy in palliative and end of life care. There is increasing debate a...

Background Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways t...

Objective: To explore the impact of environment on experiences of hospitalisation from the perspective of patient's with palliative care needs. Methods: A qualitative study design using longitudinal semistructured, face-to-face interviews were used to elicit the views of patients with palliative care needs admitted to hospital in 1 large urban a...

Background The acute hospital plays a significant role in caring for people with a life-limiting illness. Most research to date has focused exclusively upon the negative aspects of hospitalisation. Currently, there is little known about the benefits of hospital admissions for patients with palliative care needs. Aim The aim of this study was to ex...

The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000....

Background: UK palliative care policy and philosophy endorse open awareness, where all parties acknowledge that the patient's death is approaching. Perceived benefits of making patients aware of their prognosis include being able to plan a variety of activities, so arguably death occurs more in keeping with their wishes. Aim: To explore if and how...

The National End of Life Care Strategy for England (2008) advocates 'choice' as a central tenet of palliative care delivery, however it is not clear how 'choice' is understood nor how choice may be shaped by perceptions of risk. A narrative literature review was undertaken with the aim of capturing understandings around choice and perceived risks i...

Patient and Public Involvement (PPI) helps to ensure that study findings are useful to end users but is under-developed in Health Technology Assessment (HTA). "INTEGRATE-HTA, (a co-funded European Union project -grant agreement 30614) is developing new methods to assess complex health technologies and applying these in a palliative care case study....

The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team providing care in the home, community hospitals and care homes. Care includes specialist interventions. Case data review shows that over two thirds of patients referred to the service die at home. As part of a multi-method eval...

Background Hospital admissions among patients at the end of life have a significant economic impact. Avoiding unnecessary hospitalisations has the potential for significant cost savings and is often in line with patient preference. Objective To determine the extent of potentially avoidable hospital admissions among patients admitted to hospital in...

The majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals. Objective: To describe the profile of older...

Improving the provision of palliative and end-of-life care is a priority for the NHS. Ensuring an appropriately managed ‘transition’ to a palliative approach for care when patients are likely to be entering the last year of life is central to current policy. Acute hospitals represent a significant site of palliative care delivery and specific guida...

This paper will examine understandings of autonomy and choice in relation to palliative and end-of-life care and identify implications for nursing practice. Autonomy in relation to patient-centred care and advocacy has been identified as a key component of palliative and end-of-life care provision internationally. Understandings of autonomy have em...

The aim of this research was to quantify the extent of palliative care transitions among patients in two acute hospitals and to identify factors predicting the initiation of a transition to palliative care. We conducted a prospective survey of hospital inpatients in two hospitals in the United Kingdom in which we examined hospital case notes for ev...

Introduction: Life story work is increasingly being used with people with dementia; this work offers a critical appraisal of some challenges that may be faced in practice. Design and methods: An in-depth case study analysis was undertaken to understand the experiences of people with dementia, family carers and care staff in using life story work...

Education and training are seen as 'absolutely essential parts of providing palliative care'. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. In Phase 1, we undertook eight focus groups and fo...

Background In most developed countries, acute hospitals play a significant role in palliative care provision and are the setting in which most people die. They are often the setting where a life-limiting diagnosis is made and where patients present when symptoms develop or when they are not well managed. Understanding the experiences of hospital ad...

AimsTo explore if and how information about a transition to a palliative care approach was communicated to patients recently discharged from hospital and who fulfilled standardized criteria for palliative care need. Background Palliative care philosophy and, more recently, UK palliative care policy, endorse a context of open' awareness, where all p...

To synthesise current evidence about the experience of older people with cancer pain and consider how exploration of this may inform clinical practice and research. Cancer is more prevalent in older age. Evidence suggests that older people's pain is generally under-recognised and under treated. Pain is a significant concern for many people living a...

Background The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and non-malignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by pat...

Background There is clear evidence that the full range of services required to support people dying at home are far from being implemented, either in England or elsewhere. No studies to date have attempted to identify the proportion of hospital admissions that could have been avoided amongst patients with palliative care needs, given existing and c...

Background: There is a widely acknowledged need to understand more fully the economics of palliative care provision in the UK. In particular, the economic impact of reducing avoidable hospital admissions among patients with palliative care needs has not been extensively researched. Aim: A recent survey of two English hospitals identified patients w...

Opioid therapy is central to the management of pain in the field of generalist palliative and end-of-life care, and international guidelines highlight the need for opioids to be used as part of a comprehensive strategy to treat pain. However, evidence suggests that the use of opioids in palliative care is suboptimal, and many patients do not receiv...

Background In common with international health policy, The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority. Aim The aim of this study was to explore the extent of palliative care need in the acute hospital setting, and to explore agreement betwe...

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care pro...

Background The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, hospital staff and others who have not undertaken specialist training in palliative care. Older people in particular are more likely to receive palliative care from generalists. A key foc...

Background Access to high quality palliative care at the end of life is becoming of increasing public health concern, and UK policy has highlighted a need to improve palliative care in the hospital setting. The majority of deaths in the UK occur in acute hospitals, and the numbers of patients dying in this setting are predicted to increase over com...

Background The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority, acknowledging that a proportion of patients dying in hospitals receive poor care. The identification of patients who may benefit from palliative care is well recognised as problemati...

  This article is a report of an integrative review to identify key elements of the physical hospital environment for end of life care of older adults and their families as reported by patients, relatives, staff and policy makers.   Globally ageing populations and increases in long-term illness mean that more people will need palliative care in the...

Background: The need to more fully understand the economics of palliative care provision is widely acknowledged; however, the evidence base regarding the extent of potentially avoidable admissions in the last year of life, and the link between reducing/redistributing overall costs of end-of-life care has not been previously evaluated. Aim: A narrat...

Background the World Health Organization identifies meeting patient choice for care as central to effective palliative care delivery. Little is known about how choice, which implies an objective balancing of options and risks, is understood and enacted through decision making at end-of-life. Aim to explore how perceptions of ‘risk’ may inform deci...

Background The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicate...

Over the next 40 years, it is estimated that the proportion of people aged 60 years and over will double from 11% to 22% of the total world population. The most significant increase is expected among those aged >80 years of whom there were 102 million in 2009; by 2050 this number will increase to 395 million.1 A ‘dramatic and steady rise’ in the nu...

Limited evidence exists relating to key elements of the optimum physical hospital environment for patients receiving palliative and end of life care in acute hospitals. The aim of this study was to explore the perspectives of health professionals regarding the optimum physical environment for palliative and end of life care in the acute hospital se...

Background: the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of countries and increased emphasis is placed upon the role of generalist palliative care. However, little is known as to how this policy is enacted on the g...

Object of study: This study explored women’s own perspectives on the changes they encountered in their sex lives at midlife and menopause. Method: Twelve British women who had recently experienced natural menopause were interviewed in-depth. Data were analysed using a material-discursive approach. Results: The majority of participants experienc...

UK policy guidance on treatment and care towards the end of life identifies a need to better recognise patients who are likely to be in the last 12 months of life. Health and social care professionals have a key role in initiating and managing a patient's transition from 'curative care' to palliative care. The aim of this paper is to provide a syst...

To explore how transitions to a palliative care approach are perceived to be managed in acute hospital settings in England. Qualitative study. Secondary or primary care settings in two contrasting areas of England. 58 health professionals involved in the provision of palliative care in secondary or primary care. Participants identified that a struc...

The aim of this study was to explore the perspectives of health care professionals (HCPs) on the transition of heart failure (HF) patients to a palliative care approach. Qualitative data were generated from 24 HCPs specializing in cardiology, care for the elderly, and palliative care. Data were analyzed using the principles of thematic analysis. Em...

Commentry on: TorkeAMHoltzLRHuiS. Palliative care for patients with dementia: a national survey. J Am Geriatr Soc2010;58:2114–21.

Question guide during interview and focus groups

the need for access to high-quality palliative care at the end of life is becoming of increasing public health concern. The majority of deaths in the UK occur in acute hospitals, and older people are particularly likely to die in this setting. However, little is known about the barriers to palliative care provision for older people within acute hos...

To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nur...

This chapter provides a guide to evaluating palliative care services. It focuses mostly on mixed method research and includes a brief overview of the most commonly used approaches for evaluation. It also presents examples of how applying mixed methods in evaluation and case study research can lead to a new field of study and further help researcher...

This study explores the spiritual needs of patients with advanced cancer during their therapeutic process in Taiwan and analyses the influence of Chinese culture in addressing their spiritual needs. Many nurse clinicians have concerns about the difficulties of providing spiritual care for ethnic-Chinese cancer clients within their cultural context,...

This article draws on a four-year evaluation that assessed the delivery of support services by 15 British hospices and social agencies to family carers of terminally ill people. It aims to examine the politics of evaluation research. Three main arguments are posited: first, that evaluation research is distinguishable from ‘quick and dirty’ evaluati...

This review explores the extent of communication between patients with heart failure and healthcare professionals regarding the potential transition from an active to a palliative approach to care.

Most research on sex and menopause has been conducted within a biomedical framework describing how, for example, declining hormone levels result in reduced sexual desire. Little research has examined women's own perspectives. In this article we present an analysis of interview data from 12 British women experiencing natural menopause. Analysis iden...

This paper aims to: • Consider the major challenges to involving people with dementia in qualitative research. • Critique a process consent framework. • Demonstrate the need for nurses and researchers to explore these issues in research and practice with people with dementia. • Consider the impact of the Mental Capacity Act 2005 on research with pe...

Rees and Wells note the barriers to conducting research in the NHS.1 The National Institute for Health Research has recently implemented a research passport system to ease the acquisition of multiple honorary contracts for multicentre research.2 In principle, the passport system removes many of the barriers to gaining contractual status (including...

Person-centred care has been linked with quality of care but difficulties remain in person-centred care being implemented in care practice. This study explores the use of life story work to enhance person-centred care with people with dementia. The study investigates how life story work is: understood and developed in practice; experienced by all p...

This article highlights the need to improve care for older people dying in acute hospitals. It discusses the role that nurses have to play in promoting better care and making necessary changes easier.

Enabling patients to be cared for in their preferred location often involves journeys between care settings. The challenge of ensuring journeys are timely and safe emerged as an important issue in an evaluation of palliative care services, which informed a service redesign programme in three areas of the United Kingdom by the Marie Curie Cancer Car...

This article highlights some of the key themes and challenges in the empirical, policy and clinical literature on end-of-life care for people with dementia. It is intended to promote critical discussion in this increasingly important area of policy and practice. The authors argue that end-of-life care for people with dementia should recognise the n...

This article introduces palliative care and palliative care nursing. It goes on to consider models of palliative care delivery and provide a more detailed account of the three elements of palliative care nursing–working directly with patients and families, working with other health and social care professionals to network and co-ordinate services,...

The publisher regrets that this article is an accidental duplication of an article that has already been published in the International Journal of Nursing Studies, volume 45 (2008) 487-488, doi:10.1016/S0020-7489(08)00043-6. The duplicate article has therefore been withdrawn.

The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to det...

This paper provides an analysis of the costs and benefits of employing voluntary staff in a single hospice unit. It forms part of a evaluation of the hospice by a multi-disciplinary research team guided by the methodological principles of formative, qualitative evaluation. Voluntary staff working at the Hospice contributed over 2000 h of unpaid lab...

To evaluate the effects of a palliative care education programme on the self-reported knowledge and confidence of 72 community nurses. a prospective longitudinal postal questionnaire survey was conducted. seventy-one (99%) completed a pre-course questionnaire, 52 (72%) a questionnaire at completion of the course, and 37 (51%) a questionnaire one ye...

Background: Changing patterns of care for terminally ill people mean that 90% of patients in the UK now spend the majority of their last year of life at home. It is now widely accepted that supporting individuals to die at home relies heavily on the availability of family carers to provide the majority of the care needed. However, one of the most c...

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cros...

Since the early 1990s, the United Kingdom has seen several initiatives designed to improve the quality of cancer palliative care in the community. We report on the evaluation of a project that took place in the rural county of Powys in Wales in which a group of general practitioner clinical facilitators (GPCFs) sought to raise the overall standard...

A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services instrument was sent to all...

The UK charity, Macmillan Cancer Relief, commissioned a 3-year pilot project employing 12 GP clinical facilitators (GPCFs). The aim was to raise the standard of generalist palliative care, provide extended clinical palliative care and provide a coordinated framework for commissioning specialist palliative and cancer care in Powys, rural Wales. As p...

Nursing research generally, and palliative care research in particular, has been criticized for generating numerous small scale, often qualitative and/or evaluative studies, from which it is difficult to draw generalizations. Our aim in this study was to conduct a synthesis of three evaluative studies of palliative care services in the United Kingd...

Family caregivers, who are patientsflrelatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find the...

Psychological intervention is not widely available for emotionally distressed patients with cancer. The purpose of this study is to investigate and report on the experiences of eight patients who participated in a programme consisting of hypnotherapy and cognitive-behaviour therapy. Following the 12-session intervention, qualitative analysis of int...

The convergence of a number of factors has led to the emergence of what has come to be known as the 'professional doctorate'. This new doctoral education diverges from the model of research doctorates that have historically predominated for more than a century. The background to these changes and the impetus for the development of this relatively n...

The county of Powys in rural Wales has a population of about 125,000 people and no district general hospitals. In 1999, 12 Macmillan general practitioner clinical facilitators were appointed as part of a pilot project aiming to provide a coordinated framework for the commissioning of specialist cancer and palliative care services, extended clinical...

Needs assessment remains an inexact yet evolving field of activity in palliative care. One reason for the variable quality of needs assessments in palliative care is the pragmatic orientation that comes from limited time and resources. Consequently a comprehensive approach to palliative care needs assessment is often not achieved. One route to its...

This article examines the analysis of qualitative data, identifying and explaining some key approaches which researchers may wish to use to contribute to the developing knowledge base of palliative nursing. Drawing on the work of Grbich (1999), practical examples from the authors' own studies of end-of-life care are used to illustrate some of the p...

Hospice care is evolving from the traditional in-patient bedded unit into a system of support which is community focused. The cornerstone of this ‘community model’ of palliative care rests on successful collaboration with the primary health care team (PHCT). However, there is evidence that establishing a community service is not straightforward, an...

This article discusses some of the ethical issues associated with the use of qualitative research methods in two doctoral studies conducted by nurses in a department of palliative medicine. These issues are of particular relevance with the increasing emphasis on evidence-based practice in palliative care. Both studies used multiple methods of data...