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Introduction
Current institution
Additional affiliations
May 2015 - present
September 2004 - April 2015
Publications
Publications (268)
Introduction
Emergency department (ED) visits for epilepsy are common, costly, and often clinically unnecessary. Configuration of care pathways (CPs) that could divert people away from ED offer an alternative. The aim was to measure patient and carer preferences for alternative CPs and to explore the feasibility of implementing the preferred CPs in...
Background
Poor adherence to photoprotection in Xeroderma Pigmentosum (XP) increases morbidity and shortens lifespan due to skin cancers.
Objective
To test a highly personalised intervention (XPAND) to reduce the dose of ultraviolet radiation (UVR) reaching the face in adults with XP, designed using known psychosocial determinants of poor photopro...
Background
Calls have been made for paramedics to have some form of care pathway that they could use to safely divert adults with epilepsy away from emergency departments and instigate ambulatory care improvements. Different configurations are possible. To know which to prioritise for implementation/evaluation, there is a need to determine which ar...
Background
Poor adherence to photoprotection from ultraviolet radiation in the rare disease xeroderma pigmentosum can be life-threatening due to heightened risk of skin cancers. This novel, two-phase research programme used mixed methods to investigate photoprotection in xeroderma pigmentosum, and its psychosocial impact, to develop an intervention...
Objectives:
Rigorous photoprotection is the only means to prevent skin cancer in people with the rare condition of xeroderma pigmentosum (XP). We conducted a qualitative process evaluation of patient experiences and responses to a highly personalized, multi-component intervention, 'XPAND', designed to influence the psychosocial determinants of ina...
Trust and empathy constitute basic elements of healthcare delivery. In recent years, the quest for greater efficiency in healthcare has also indicated the necessity of these values. The study aims to develop and assess a 10-item tool, namely, the Personal Trust and Connections (PerTC) scale. The study was conducted at a general hospital in eastern...
Background
For patients with xeroderma pigmentosum (XP), the main means of preventing skin and eye cancers is extreme protection against ultraviolet radiation (UVR), particularly for the face. We have recently developed a methodology for objectively measuring photoprotection behaviour (‘UVR dose to facial skin’) and have found that the degree of ph...
Background
In Xeroderma Pigmentosum (XP), the main means of preventing skin and eye cancers is extreme protection against ultraviolet radiation (UVR). Protection is most important for the face.
Objectives
We aimed to assess how well patients with XP adhere to medical advice to protect against UVR by objectively estimating the mean daily dose of UV...
Goal
To assess public knowledge and attitudes towards the role of the family in deceased organ donation in Europe.
Methods
A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing...
We conducted a systematic review on public knowledge and attitudes towards the role of the family in deceased organ donation in Europe between 2008 and 2017. Results show that a majority of the public support the family’s involvement in organ retrieval decision-making and, in particular, their role as surrogate decision-maker when the deceased has...
Background
Globally, a rising number of people live into advanced age and die with multimorbidity and frailty. Palliative care is advocated as a person-centred approach to reduce health-related suffering and promote quality of life. However, no evidence-based interventions exist to deliver community-based palliative care for this population.
Aim
T...
Background
Inflammatory bowel disease (IBD) may impact the extent to which food, eating, and drinking bring satisfaction and enjoyment to peoples’ lives, and this may impact dietary intake. The prevalence of an impaired food-related quality of life (FR-QoL), its associated factors, and its impact on diet have not been explored.
Objectives
To measu...
Purpose
An individual’s lack of social connections and social isolation is often associated with feelings of loneliness which is regarded as having a negative effect on health. This paper describes the development and assessment of a 10 item ‘Personal Sociability and Connections Scale’ (PeSCS) to measure individual’s disposition and accompanying sk...
Background No seizure first aid training intervention exists for people with epilepsy who regularly attend emergency departments and their significant others, despite such an intervention’s potential to reduce clinically unnecessary and costly visits. Objectives The objectives were to (1) develop Seizure first Aid training For Epilepsy (SAFE) by ad...
Background: No seizure first-aid training intervention exists for people with established epilepsy (PWE) who regularly attend emergency departments (ED) and their significant others (SO), despite the potential to reduce clinically unnecessary and costly visits.
Objectives: (1) Develop Seizure First Aid Training For Epilepsy (SAFE) by adapting a b...
Background:
End of life (EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer p...
Purpose: Emergency Department (ED) visits are costly to the health service and alternative care pathways may address this whilst improving outcomes. We aimed to describe decision-making and preferences of people with epilepsy (PWE) during emergency service use, and views of ED alternatives, including use of an Urgent
Treatment Centre and telephone-...
Objective: To determine the feasibility and optimal design of a randomised controlled trial (RCT) of Seizure First Aid Training For Epilepsy (SAFE).
Design: Pilot RCT with embedded microcosting.
Setting: Three English hospital emergency departments (EDs).
Participants: Patients aged ≥16 with established epilepsy reporting ≥2 ED visits in the prior...
Background
In 2016, over one-quarter of births in the UK (28.2%) were to foreign-born women. Maternal and perinatal mortality are disproportionately higher among some immigrants depending on country of origin, indicating the presence of deficits in their care pathways and birth outcomes.
Objectives
Our objective was to undertake a systematic revie...
Background End of life(EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice(GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patie...
Background
Individualised behaviour change interventions can result in greater effects than one-size-fits-all approaches. Factors linked to success include dynamic (vs. static) tailoring, and tailoring on behaviour, multiple theoretical variables, and participant characteristics. XP is a very rare (∼100 UK patients) genetic disease, involving an in...
Background: Intervention Mapping (IM) is a systematic approach for developing theory-based interventions across a variety of contexts and settings. This paper describes the development of a complex intervention designed to reduce the dose of ultraviolet radiation (UVR) reaching the face of adults with Xeroderma Pigmentosum (XP), by improving photop...
One in four births in the UK is to foreign-born women. In 2016, the figure was 28.2%, the highest figure on record, with maternal and perinatal mortality also disproportionately higher for some immigrant women. Our objective was to examine issues of access and experience of maternity care by immigrant women based on a systematic review and narrativ...
Objectives:
Social support influences adherence to treatment in chronic illness, but there is uncertainty about its facilitators and constraints. This study explored the forms, processes, and responses associated with mobilization of informal support across three life contexts amongst patients with Xeroderma Pigmentosum (XP), a condition requiring...
Introduction:
Behavioral determinants can enable or hinder motivation towards registration and donorship and, subsequently, action or inertia towards organ donation. Nevertheless, there is limited information about the role of self-efficacy in relation to organ donation awareness and presumed consent among individuals and their families. The aim o...
Introduction:
Emergency department (ED) visits for epilepsy are common, costly, often clinically unnecessary and typically lead to little benefit for epilepsy management. An 'Alternative Care Pathway' (ACP) for epilepsy, which diverts people with epilepsy (PWE) away from ED when '999' is called and leads to care elsewhere, might generate savings a...
Background End of life(EoL) care becomes more complex and increasingly takes place in the community but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patie...
Introduction:
Poor adherence to photoprotection for people with xeroderma pigmentosum (XP) can be life-threatening. A randomised controlled trial (RCT) is being conducted to test the efficacy of a personalised adherence intervention (XPAND) to reduce the level of ultraviolet radiation (UVR) reaching the face, by improving photoprotection activitie...
Introduction
Inflammatory bowel disease (IBD) patients often report that dietary intake and the enjoyment of food is affected by their condition. However, the prevalence of impaired food-related quality of life (FR-QoL) and associated factors have not been previously explored. This study aimed to determine the levels of FR-QoL and factors associate...
Introduction
Extensive research has provided an important understanding of the impact of inflammatory bowel disease (IBD) on nutrient intake, requirements and metabolism. By contrast, there has been limited research examining the psychosocial aspects of food, eating and drinking in IBD. The present study aimed to address this unmet need.
Methods
Q...
Objectives
Transitioning to secondary progressive multiple sclerosis (SPMS) is demanding for both patients and healthcare professionals. The particular challenges and the ways patients cope are poorly understood. The present study examines what challenges people face when diagnosed with SPMS by exploring experiences of people who have transitioned...
Background: Personalised behaviour change interventions can result in greater effects. Most personalisation is based on between-participant factors like demographics and theoretical constructs (e.g., intention vs. volition), although precision medicine using single-case data is increasing. XP is a very rare (~100 UK patients) genetic disease, invol...
In this study, we examine photoprotection for children with Xeroderma pigmentosum (XP), a rare genetic skin disease requiring rigorous photoprotection, to reduce risks of severe burning and skin cancers from exposure to ultraviolet radiation (UVR). We elicit the views and experiences of both children and their parents to inform the care and support...
Background
A high level of photoprotection is required by people with xeroderma pigmentosum (XP), a rare skin disease, to reduce skin cancer and other risks. However poor photoprotection is thought to be widespread.
Purpose
This study examines the influences on photoprotection behaviours in adults with XP.
Design
Inductive qualitative study with...
Purpose:
To measure fidelity with which a group seizure first aid training intervention was delivered within a pilot randomized controlled trial underway in the UK for adults with epilepsy who visit emergency departments (ED) and informal carers. Estimates of its effects, including on ED use, will be produced by the trial. Whilst hardly ever repor...
Background
Inflammatory bowel disease (IBD) patients often report that dietary intake and the enjoyment of food is affected by their condition. However, the prevalence of impaired food-related quality of life (FR-QoL) and associated factors have not been previously explored. This study aimed to determine the levels of FR-QoL and factors associated...
Background: Social support is known to be important in the self-management of chronic illness but there are questions of the processes involved and why responses vary. This study explored these issues among patients with Xeroderma Pigmentosum (XP) that requires a range of photoprotection measures to reduce cancer risks. Methods: Individual semi-str...
Background: Several countries have recently changed their model of consent for organ donation from opt-in to opt-out. We undertook a systematic review to determine public knowledge and attitudes towards these models in Europe.
Methods: Six databases were explored between 1 January 2008 and 15 December 2017. We selected empirical studies addressing...
Background:
There is a significant geographical disparity in place of death. Socio-demographic and disease-related variables only explain less than a quarter of the variation. Healthcare service factors may account for some (or much) of the remaining variation but their effects have never been systematically evaluated, partly due to the lack of a...
Introduction
Inflammatory bowel disease (IBD) has a profound impact on diet and nutrition that creates limitations in psychosocial functioning and impacts quality of life (termed food-related quality of life, FR-QoL). The issues experienced and the management methods used by patients with IBD and healthcare professionals (HCPs) regarding FR-QoL are...
Background
Epilepsy is a common neurological condition resulting in recurrent seizures. Research evidence in long-term conditions suggests that patients benefit from self-management education and that this may improve quality of life (QoL). Epilepsy self-management education has yet to be tested in a UK setting.
Objectives
To determine the effecti...
Objective
Epilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self‐management. Our objective was to evaluate a group self‐management education courses for people with epilepsy and drug‐res...
Background
Inflammatory bowel disease (IBD) has a profound impact on diet and nutrition that creates limitations in psychosocial functioning and impacts quality of life (termed food-related quality of life, FR-QoL). The issues experienced and the management methods used by patients with IBD and healthcare professionals (HCPs) regarding FR-QoL are n...
Purpose:
To elicit bereaved families' experiences of organ and tissue donation. A specific objective was to determine families' perceptions of how their experiences influenced donation decision-making.
Methods:
Retrospective, qualitative interviews were undertaken with 43 participants of 31 donor families to generate rich, informative data. Part...
Most epilepsy-related emergency department visits are by persons with established epilepsy who have experienced an uncomplicated seizure. Those frequently attending and their informal carers may benefit from a self-management intervention that improves seizure management confidence. We used a collaborative approach to develop such an intervention....
Introduction
Xeroderma pigmentosum (XP) is a rare genetic condition caused by defective nucleotide excision repair and characterised by skin cancer, ocular and neurological involvement. Stringent ultraviolet protection is the only way to prevent skin cancer. Despite the risks, some patients’ photoprotection is poor, with a potentially devastating i...
This study explored experiences of stigma in 25 adults with xeroderma pigmentosum. Analysis of semi-structured interviews revealed the changing nature of stigma over the lifetime. Bullying occurred in childhood, whereas adults were questioned about both their photoprotection and skin damage, often resulting in internalised feelings of stigma. Resil...
Introduction
A quarter of all births in the UK are to mothers born outside the UK. There is also evidence that immigrant women have higher maternal and infant death rates and of inequalities in the provision and uptake of maternity services/birth centres. The topic is of great significance to the National Health Service because of directives that a...
Epilepsy affects around 1% of the UK population; 40% of whom experience two or more seizures annually. However , most Emergency Department (ED) visits by people with epilepsy (PWE) are clinically unnecessary. Evidence highlights that with correct training, seizures can be safely managed by patients and their families within the community. Arguably...
Background and purpose:
Having epilepsy requires individuals to learn about self-management. So far, trials of self-management courses have not included in-depth qualitative evaluations of how the learning method influences participants' perceptions and behaviour. We aimed to interview participants who had attended a course, as part of a randomize...
Objective:
We examined cognitive and behavioural challenges and adaptations for people with progressive multiple sclerosis (MS) and developed a preliminary conceptual model of changes in adjustment over time.
Design:
Using theoretical sampling, 34 semi-structured interviews were conducted with people with MS. Participants were between 41 and 77...
Background
Rare disease patients and caregivers face uncommon, serious, debilitating conditions often characterised by poor prognosis and limited treatment options. This study aimed to explore what they consider of value when choosing between hypothetical therapeutic options and to quantify both their benefit-risk preferences and the influence of d...
Objective
To explore the decisions of people with advanced cancer and their caregivers to seek emergency department (ED) care, and understand the issues that influence the decision-making process.
Design
Cross-sectional qualitative study incorporating semistructured patient and caregiver interviews.
Methods
Between December 2014 and July 2015, se...
Table S1. Comparison of decedent characteristics for participants and nonparticipants.
Table S2. Unadjusted univariate analysis of illness and environmental factors by EoL transition.
Table S3. Sensitivity analysis on dependent variable.
Table S4. Sensitivity analysis for multivariable regression of EoL transition to hospital versus no transitio...
Objective
To explore the decisions of people with advanced cancer, and their caregivers, to seek emergency department (ED) care, and understand the issues that influence the decision-making process.
Design
Qualitative study incorporating semi-structured patient and caregiver interviews, plus research field notes.
Methods
Between December 2014 and...
Background:
understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom.
M...
Background
Group self-management courses are usual in Type 1 diabetes. Epilepsy is commoner, and group courses (MOSES) are offered freely in Germany. We adapted MOSES for the NHS, and are trialing it for people with poorly controlled epilepsy. Learning is interactive, with feelings and self-esteem discussed, and facts like the commonness of epileps...
Black, Asian and minority ethnic (BAME) groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks.
Objective
To identify barriers to organ donor registration and family consen...
Background:
Migraine headache has a high prevalence and a severe impact on personal, social and work life, forming a significant burden on patients, service providers and society. There is some evidence of the effectiveness of behavioural interventions to supplement drug therapy but a recognised need to identify an effective minimal contact approa...
Abstract
Following renal transplantation patients experience on-going immunosuppressant medication to reduce the risk of graft rejection. Over the long term the side effects of immunosuppressive drugs may affect graft survival and significantly increase risks of cancers, stroke and cardiovascular disease. To reduce these risks research is underway...
Background
With increasingly intensive treatments and population ageing, more people face complex treatment and care decisions. We explored patterns of the decision-making processes during critical care, and sources of conflict and resolution.
Methods
Ethnographic study in two Intensive Care Units (ICUs) in an inner city hospital comprising: non-p...
To the Editor We read with particular interest the study by Chatterjee et al1 reporting the limited effect of a variety of state policies on organ donations and transplantations in the United States. Interestingly, policies such as first person consent laws, donor registries, public education programs, paid leaves, and tax incentives presented no s...
Background and aims:
Psychosocial factors surrounding eating and drinking such as enjoying food, managing restrictions and maintaining social relationships remain under-researched in IBD. This study aimed to develop and validate a food-related quality of life (FR-QoL) questionnaire to systematically measure these issues in the IBD population.
Met...
Background:
Epilepsy is a long-term condition that requires self-management, but currently, there is no well-evaluated epilepsy self-education or self-management intervention in the United Kingdom (UK).
Aim:
The aim of this study was to examine the views and experiences of the first participants of the Self-Management in epILEpsy UK (SMILE UK) p...
Objectives To understand healthcare professionals’ perceptions of the benefits and potential harms of integrated care pathways for end-of-life care, to inform the development of future interventions that aim to improve care of the dying.
Design Qualitative interview study with maximum variation sampling and thematic analysis.
Participants 25 health...
Introduction:
People with chronic epilepsy (PWE) often make costly but clinically unnecessary emergency department (ED) visits. Offering them and their carers a self-management intervention that improves confidence and ability to manage seizures may lead to fewer visits. As no such intervention currently exists, we describe a project to develop an...
Thaler and Sunstein’s behavioural-economics theory of ‘Nudge’ aims to achieve beneficial outcomes for individuals and the society through designing the contexts in which choices are made rather than relying on traditional policy levers of restrictions, penalties and education. This article examines Nudge strategies to increase registration as a dec...
There is a need to test the effectiveness of new educational interventions for people with poorly controlled epilepsy. The SMILE (self-management education for adults with poorly controlled epilepsy) trial evaluates a complex service intervention that involves a 2-day self-management course with the aim of improving quality of life and clinical out...
Black and Asian Minority Ethnic (BAME) groups are over-represented on active kidney transplantation waiting lists and have relatively long waiting times. This inequality arises from a particularly high need for kidney transplantation combined with a low rate of deceased donation among BAME groups which limits the availability of a well-matched graf...
Background: Canada’s diverse society and its statutory commitment to multiculturalism means that a synthesis of knowledge related to the healthcare experiences of immigrants is essential to realise the health potential for future Canadians. Although concerns about the maternity experiences of immigrants in Canada are relatively new, recent national...
Background:
Canada's diverse society and its statutory commitment to multiculturalism means that a synthesis of knowledge related to the healthcare experiences of immigrants is essential to realise the health potential for future Canadians. Although concerns about the maternity experiences of immigrants in Canada are relatively new, recent nationa...
