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Introduction
Skills and Expertise
Publications
Publications (53)
Background
People with advanced cancer experience psychological distress due to physical symptoms, functional decline, and a limited prognosis. Difficult thoughts, feelings, and emotions may exacerbate distress and lead to avoidance of these experiences which is sometimes referred to as experiential avoidance (EA). Advanced cancer patients may be m...
Background
Bispectral index (BIS) monitoring uses electroencephalographic data as an indicator of patients’ consciousness level. This technology might be a useful adjunct to clinical observation when titrating sedative medications for palliative care patients. However, the use of BIS in palliative care generally, and in the UK in particular, is und...
Background
Talking control (TC) was developed to control for the common factors in therapy so that the specific effects of therapy can be tested. A TC was recently used in a pilot study of Acceptance and Commitment therapy for dysfunction in people with advanced cancer. This work explores the audio recording of the sessions in a TC to explore how t...
Objectives
People with cirrhosis are encouraged to participate in shared decision-making with their doctors, but studies suggest that doctors limit the amount of information that is shared. In this study we explore the presence of medical power in clinical encounters in 2015 from a patient perspective and highlight its effects on healthcare interac...
Background and aims:
Liver health professionals have difficulty discussing liver cirrhosis and its prognosis with patients and families. Question Prompt Lists (QPLs), which are evidence-based lists of "recommended questions," may improve communication but need to be designed specifically for the target population. This study aimed to develop and p...
Objective
Nearly half of care home residents with advanced dementia have clinically significant agitation. Little is known about costs associated with these symptoms toward the end of life. We calculated monetary costs associated with agitation from UK National Health Service, personal social services, and societal perspectives.
Design
Prospective...
Background: Good communication between health professionals and patients is important in healthcare, but difficult to implement in practice. This is highlighted in care for people with cirrhosis where patients have little understanding about their disease and feel stigmatized when communicating with health professionals. No study has explored the c...
Background:
Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family...
Background
Depression is one of the most common mental disorders in people with advanced cancer. Although cognitive–behavioural therapy (CBT) has been shown to be effective for depression in people with cancer, it is unclear whether this is the case for people with advanced cancer and depression.
Aims
We sought to determine whether CBT is more cli...
Background
With a prevalence of up to 16.5%, depression is one of the commonest mental disorders in people with advanced cancer. Depression reduces the quality of life (QoL) of patients and those close to them. The National Institute for Health and Care Excellence (NICE) guidelines recommend treating depression using antidepressants and/or psycholo...
Background::
Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care.
Aims::
To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring...
Objective
To understand the feasibility of recruiting people with advanced cancer into a randomised controlled trial of Acceptance and Commitment therapy (ACT) vs a standardised Talking Control (TC) and delivering ACT to this population; to explore the acceptability of outcome measures and generate normative data.
Methods
This was a feasibility tw...
Background:
People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be evidence based from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals' perspectives on deliver...
726443_Supp_mat – Supplemental material for Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life
Objectives
To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care
Setting
Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services...
Objective
To identify the limitations in palliative care provision in the last year of life for people with liver cirrhosis and potential barriers to and enablers of palliative care.
Design
Mixed methods, including a retrospective case note review, qualitative focus groups and individual interviews.
Setting
A tertiary referral liver centre in the...
Background:
Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care.
Aims:
To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia.
Design:
9-month prospective cohort study.
Setting a...
Background
Many studies have examined the mental health of carers of people with dementia. Few have examined their experiences in the advanced stages of disease and into bereavement. We aimed to understand the experiences of carers during advanced dementia exploring the links between mental health and experiences of end of life care.
Methods
Mixed...
Background:
Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited.
Aim:
To explore the views and experiences of current and formerly...
Background
Many people with dementia die in nursing homes, but quality of care may be suboptimal. We developed the theory-driven ‘Compassion Intervention’ to enhance end-of-life care in advanced dementia.
Objectives
To (1) understand how the Intervention operated in nursing homes in different health economies; (2) collect preliminary outcome data...
Introduction
The very end of life can be associated with pain, anxiety and caregiver burden. Numerous measures seek to assess the quality of death and dying and satisfaction with care, but there is a lack of evidence and consensus on the best tools.
Aims
To identify all existing tools for assessing quality of death and dying and the quality of car...
Background and aims
The incidence of liver disease is increasing in the UK; it is now the 3rd commonest cause of death in those aged under 65. People with cirrhosis often have complex physical problems that require regular comprehensive management. Limited evidence exists on the ways that people with cirrhosis cope with the disease. We aimed to exp...
Objective:
To examine how end-of-life talk is initiated in CALM therapy sessions with advanced cancer patients.
Methods:
Conversation analysis was used to systematically examine the sequences where talk about death was raised in the first sessions of ten patients.
Results:
Open questions about the patients' experiences, feelings or understandi...
Background:
Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with famil...
Background:
The prevalence of depressive disorder in adults with advanced cancer is around 20 %. Although cognitive behavioural therapy (CBT) is recommended for depression and may be beneficial in depressed people with cancer, its use for depression in those with advanced disease for whom cure is not likely has not been explored.
Methods:
People...
One-third of people with cancer experience psychological distress and may suppress distressing thoughts, emotions, and concerns, leading to further problems. Conventional psychological treatments reduce distress by problem solving, but in advanced cancer, when ill health is progressive and death may be approaching, physical and psychological diffic...
Background:
The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia.
Aim:
To develop an integrated, whole...
Objective To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research.
Design An on-line questionnaire survey with closed and open responses.
Setting HCPs identified from the mailing list of special interest gr...
Introduction Liver disease is a growing global public health problem and the 5thlargest cause of death in the UK. Health policy for this patient group primarily centres on prevention, paying minimal attention to improving end of life care for those affected.
Aims To follow patients with cirrhosis in the last year of life, plotting healthcare use an...
Introduction Liver disease is the third largest cause of premature death in the United Kingdom (UK) and currently accounts for 2% of deaths in England, but there is little strategy to improve care for those dying from it, as well as a lack of research in this area. Understanding of the views of health care professionals (HCP) on how care can be imp...
In line with the National Dementia Strategy (2009), a mixed methods programme was designed to develop and pilot a complex intervention to improve end of life care for people with advanced dementia. A facilitation-based model provided education, training and support to health care professionals (HCPs) creating an integrated, individualised and holis...
Liver disease is the third largest cause of death in the UK in people under the age of 65. With predicted increases in alcohol consumption, viral hepatitis and obesity, it is anticipated that the economic burden on the healthcare system will continue to rise.
To evaluate costs of hospital admissions for patients with end-stage liver disease over th...
Discussion about care preferences and end of life wishes between family and staff on entry to a care home is an important predictor of family satisfaction with end of life care for residents with advanced dementia.
This paper aims to examine issues relating to end of life discussions with family members of residents with advanced dementia. Data wer...
Introduction:
In the UK approximately 700,000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and th...
Carers of people with advanced dementia (AdvD) have high burden and poor mental and physical health. The CoMPASs:IOn programme has developed and is piloting a complex intervention to improve end-of-life care for people with AdvD including support for families.
Pilot longitudinal cohort study of carers (target N=40) of people with AdvD (Functional A...
CONTEXT Two million people across the U.K. are living with cancer, often experienced as a long-term condition. They may have unmet needs after active treatment. Rehabilitation aims to address these needs, maximize psychological and physical function, and enable minimum dependency regardless of life expectancy.
OBJECTIVES We aimed to test, in a ra...
Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative de...
Introduction
Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and...
The Marie Curie Hospice in Hampstead provides a rehabilitative model of day care therapy to support patients living with and beyond cancer. This model was selected as a site of excellence for further attention in the National Cancer Survivorship Initiative 2008. We conducted a randomised controlled trial to evaluate the clinical and cost-effectiven...
Residents at St Mungo's with alcohol related liver disease frequently experience sudden deaths. There were no prognostic indicators to alert staff that a resident may be nearing the end of life and thus opportunities for possible interventions were not being recognised.
To identify whether residents who have advanced alcohol related liver disease s...
Palliative care rehabilitation aims to maximize physical and psychological functioning, but negative thoughts can hinder patients from attempting this approach. Acceptance and commitment therapy (ACT), a modified form of cognitive behavioral therapy, encourages individuals to experience and manage negative emotions by focusing on changing individua...
Hospice care supports patients and their families physically and emotionally through the dying phase. In many countries a substantial portion of specialised end-of-life care is provided through hospices. Such care has developed outside of general healthcare and is commonly provided in a patient's home or in dedicated facilities. Hospice provision m...