Published: Dec 11, 2013 9:15:21 PM
Published: Dec 11, 2013 2:17:49 PM
Published: Dec 4, 2013 2:49:13 PM
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- Post-discusion report: The Alzheimer Enigma in an Ageing World
- Windows to Wellbeing - final report from the winning project team at UCL's Wellbeing Week prize workshop
- Seven cross-disciplinary activities will be supported in 2013-14 with a GCHW Small Grant
- Grand Challenges Student Fund: up to £750 available for student led projects – More
Small Grant Activities
The Grand Challenges Small Grants Scheme supports a wide range of societally relevant, cross-disciplinary activities across UCL. Below you can find out more about the various collaborations that have been made possible following the award of a Small Grant from the Grand Challenge of Human Wellbeing.
- Lead Applicant: Dr. Jack Stilgoe (Science and Technology)
- Main Collaborator: Dr. Jason Blackstock (Science, Technology and Public Policy)
- Additional Collaborator: Chiara Armeni, Research Associate, UCL Laws
This grant is for a pilot study to map emerging geoengineering research and patenting activity and kickstart further UCL work in the area of geoengineering governance. It will pay for a framing workshop and initial scan of databases in this nascent, controversial area of science.
Geoengineering is defined by the Royal Society as “the deliberate large-scale manipulation of the planetary environment to counteract anthropogenic climate change” (Royal Society, 2009). While some have argued that it represents a viable response to climate change, most (including the Royal Society) agree that such proposals raise enormous questions of risk, ethics and public concern (Royal Society, 2009; Robock, 2008). If geoengineering is seen as credible insurance against the effects of climate change, there is the possibility of a ‘moral hazard’, leading to a relaxation of mitigation efforts. There is an acute awareness among scientists that research could be a step onto a slippery slope (Jamieson, 1996). The scale of ethical, political and social questions raised by early geoengineering proposals as they begin to be researched has turned attention towards questions of the governance of research. Upstream debates about geoengineering will have profound downstream implications for environmental sustainability and human wellbeing.
Learning about carer errors and resilience strategies (CARE-ERRS): Equipment usability in using home enteral nutrition for older people
- Lead Applicant: Orlu Gul (School of Pharmacy)
- Main Collaborator: Dominc Furniss (Psychology & Language Sciences)
- Additional Collaborators: Prof Felicity Smith (UCL School of Pharmacy) and Prof Ann Blandford (UCL Computer Science)
Nutrition and medication support for older people is critical for human wellbeing in later life. Enteral feeding can be used when patients are unable to eat or swallow medication, i.e. fluids can be given via tubing down the nose, or into a ‘peg’ in the abdominal area, directly into the stomach. However there are many practical issues associated with home enteral feeding that may affect patient safety including: accidental or intentional tube dislodgement, pump inaccuracy, frequent blockages of tubes, storage of feed, medication and equipment in an inappropriate environment and night-time carer sleep disturbance. As far as we are aware carers’ experiences of home enteral feeding for older people has not been researched.
The proposed small grant project will consist of four consecutive activities that empower the carers voice in the design, conduct and dissemination of findings. Activity 1 will be a focus group with carers to get their input into the design of a national survey. This survey will form Activity 2 that aims to assess the safety and usability aspects of carers’ enteral feeding technique when home enteral tube is used for feeding and administering medicine to older people. It will be followed by Activity 3, `public engagement workshop` to consolidate findings of the conducted survey and collect carers` views on what is important to their community. Besides carers, representatives of EMA, Geriatric Medicine Society, relevant charities (Age UK and others) and pharmaceutical companies will be invited to the proposed workshop. It will provide a forum for stakeholders to discuss various research activities, concepts and ideas at a national and European level. Activity 4 will be the dissemination of our findings internally and externally. Internally, we will hold a meeting entitled `Creating Connections` between the UCL Interaction Centre (UCLIC) and the new division of UCL, School of Pharmacy. We will present our findings, the lessons learnt from this cross-disciplinary venture, and hold activities to encourage the sort of serendipitous encounters between researchers of different disciplines that Dr Orlu Gul and Dr Furniss have benefited from. Externally, Dr Orlu Gul and Dr Furniss will present findings in a clinical focussed conference and in a technology themed meeting, respectively.
- Lead Applicant: Dr Natalie Bohm, (Ear Institute)
- Main Collaborator: Professor Harry Hemingway (Epidemiology and Public Health)
- Additional Collaborators: Aneeka Degun (Audiologist and Research Assistant UCL ENT Clinical Trials Programme (evidENT). Professor Anne Schilder (NIHR Research Professor, Director UCL ENT Clinical Trials Programme (evidENT). Dr Helen Blackshaw (NIHR Research Fellow, Senior Research Associate evidENT) Professor David McAlpine’s (Director Ear Institute) Bill Aylward (Director, OpenEyes, Moorfields Eye Hospital. Professor Shakeel Saeed (Clinical Director University College) London / Royal National Throat Nose and Ear Hospital) Johanna Moss (Divisional Manager of University College London / Royal National Throat Nose and Ear Hospital) Zena Butt (Service Manger, University College London / Royal National Throat Nose and Ear Hospital of Adult Audiology services)
Delivery of excellence in health care relies on good quality information available at the right place, and at the right time. This is the case for the clinical management of individual patients, but it is also a pre-requisite for reliable audit, analysis of outcomes, research, evidence based practise and resource management. This calls for information technology solutions, such as electronic healthcare records and systems, that are meaningful and applicable for clinicians.
However the majority of NHS healthcare continues to be delivered using paper based records. Reasons include the challenge of data input in a busy clinical environment, cultural issues, and the lack of capable and flexible IT solutions to process the information.
The objectives of this proposed project are to build upon the scoping exercise and establish the following:
a) Engagement with members of patients and public, to gather their requirements for electronic healthcare system (OpenENT). This will be achieved via holding patient and public and focus groups.
b) Clinical engagement and collaboration to gather and formalise clinical knowledge in a computable fashion with clinicians, researchers, academic and managers to develop the OpenENT system. This will be achieved via holding workshops to inform application design/ content (building clinical templates), in a way that is understandable to most clinicians.
c) Launch a pilot version of OpenENT within ENT (hearing) and Audiology at UCLH/RNTNEH.
Within this project we will receive support and work closely with evidENT and the Centre for Health Service and Academic Partnership in Translational E-Health Research (CHAPTER), which aims to provide researchers and the public the best opportunity to work together to transform the relationships between the patient , their health record and its use for clinical care and translational research.
- Lead Applicant: Dr Lucy Serpell (Clinical Educational & Health Psychology)
- Main Collaborator: Professor Peter Dayan (Gatsby Computational Neuroscience Unit)
- Additional Collaborator: Dr Jon Roiser (Institute of Cognitive Neuroscience)
A healthy balanced diet has major implications for health and wellbeing. This notion is embodied by the phrase ‘you are what you eat’ - but how are humans affected when we do not eat? Recently, extreme weight loss plans termed ‘intermittent fasting diets’ that involve alternating between 2 days of minimal intake (3-500 calories) and 5 days of normal eating have become increasingly popular.
The study will be carried out with healthy controls to examine the effects of short-term fasting on cravings for food and the ability to make goal-directed vs. stimulus-driven choices. Participants will attend two sessions, spaced one week apart, and complete personality questionnaires and a decision making task (based on that of Daw, Gershman, Seymour, Dayan & Dolan, 2011). Participants will also be asked to rate food and non-food items for wanting, liking, and craving (Rangel, 2012). Prior to one session participants will fast for 18 hours; prior to the second they will eat normally. By comparing performance on these cognitive tasks with subjective ratings of stimuli we will be able to clarify how extreme diets might affect our wellbeing. Specifically, does short-term fasting increase cravings for food items compared to non-food items, and how does this interact with decision making?
- Lead Applicant: Dr Amanda Williams (Clinical Educational & Health Psychology)
- Main collaborator: Professor Anthony Dickenson (Neuroscience, Physiology and Pharmacology)
- Additional Collaborator: Professor Ann Blandford (UCL Computer Science)
The overall aim of this project is to analyse current visual representations of pain in order to inform the design of improved, patient-directed representations of pain. Pain is a major health problem, whether a result of a lesion or disease or in its own right. Although both an emotional and somatic experience, psychological aspects are largely disregarded while medical treatment is pursued.
Where a cause is identified, pain is generally not proportional to tissue damage or disease stage because of changes in the pain system that modulate the experience, but pain that is amplified by that system generates anxiety and helplessness. Where no cause is identified or treatment attempts are unsuccessful, pain is largely attributable to peripheral and central nervous system changes. Frequently the affected person continues to experience pain as a warning signal of something wrong, at odds with those treating them or recommending long term self-management.
We will collect visual representations of pain, from internet (using recognised search strategies) and printed sources available to the public (from open access journals to patient information leaflets). We will subject this to qualitative analysis to identify the key themes. We will subject the output to expert scrutiny to identify missing elements, if any. This will enable us to state the user requirements for accurate final representations, and to select the best from the set collected. We will use principles from sensemaking to prepare materials for testing.
Evaluation of patients and clinicians’ preferences for different drug administration modes using discrete choice experiments
- Lead Applicant: Dr Sofia Simaria (Biochemical Engineering)
- Main Collaborator: Mr Ebenezer Tetteh (Applied Health Research)
- Additional Collaborators: Prof Steve Morris (UCL Applied Health Research) and Prof Nigel Titchener-Hooker (UCL Biochemical Engineering)
Biopharmaceuticals are the fastest growing part of the pharmaceutical industry, due their clinical value in treating conditions such as severe arthritis, haemophilia and some cancers that previously had no satisfactory treatment. Examples of commercial products include Herceptin® (breast cancer), Cimzia® (rheumatoid arthritis, Crohn’s disease) and Cervarix ® (cervical cancer vaccine).
Biopharmaceutical products are primarily designed for clinical efficacy and often issues related to the ease of delivery to the patient are not properly addressed. Typical administration regimes include the delivery of multiple doses over time via intravenous infusions, intramuscular injections or subcutaneous injections, requiring different types of resources (e.g. hospitalisation time versus self-administration) and hence having a strong impact on the overall drug administration cost. Furthermore the drug administration mode and frequency has a strong impact on non-monetary factors, e.g. convenience, adherence and continuity of treatment, reduction of medication errors etc. A given method of drug administration that incurs the lowest cost to the healthcare payer may incur hidden costs in terms of what is preferred by patients and clinicians. It is therefore crucial to understand and assess the trade-offs between the different drug administration modes, so that better drugs are developed and delivered to patients.
The aim of the proposed study is to investigate what attributes (characteristics or features) of the different modes of drug administration are most preferred by patients and clinicians, and assign a monetary value to these attributes, which will represent the willingness-to-pay for a particular option. This then will allow a straightforward comparison with the direct costs of drug administration so that both components can be incorporated in a multi-criteria decision making framework which will also include the manufacturing cost of the drug. Such a tool is currently being developed in the EPSRC Centre for Innovative Manufacturing in Emergent Macromolecular Therapies, hosted by UCL.
- Lead Applicant: Professor Peter John (UCL Political Science)
- Main Collaborator: Professor Peter Wolfe (UCL Statistical Science)
- Additional Collaborator: Dr Slava Mikhaylov, Department of Political Science
Political scientists and public policy scholars want to know what topics government and other decision makers, such as in health policy, are concentrating on at any one point in time, in particular how they respond to external events and deal with them. Thus far scholars have coded a limited range of documents over time to understand this, usually using hand coding by teams of research assistants. Much has been learned from these exercises, but new developments in the analysis and supply of data, across both computer science and political science, give an opportunity to move ahead this research area. The applicants are well positioned to lay the foundations for a significant research development and to take advantage of the large investments by the research councils and government agencies in Big Data.
Stage I of this project will use new forms of software to analyse the health and other content of Queen's Speeches and to compare with existing codings and will provide a validation of the application of unsupervised and relational topic models in public policy settings. Stage II will collect and analyse the health content of budget speeches by government using the topic models. Budget speeches provide a unique observable implication of the bargaining process by cabinet members over budgetary redistribution, with clear corresponding outcome variables in terms of hard budget figures. Stage III will collect network data of ministers in the UK government: the connections to each other by different measures, such as connection in a previous ministry, connection by propinquity of constituency, and connection by educational or occupational background. The analysis of the project will seek to see whether changes in the content of policies and policy priorities (budgetary redistribution and budget share) are constrained or facilitated by network connections.
How to get on (with) a bus: A pilot study of wheelchair users' engagement with research on bus accessibility
- Lead Applicant: Dr Brian Balmer (UCL Science & Technology Studies)
- Main Collaborator: Dr Catherine Holloway (UCL Civil, Environmental and Geomatic Engineering)
- Additional Collaborators:
Dr Norma Morris (UCL Science & Technology Studies)
Raquel Velho, MSc Student (UCL Science & Technology Studies)
Every weekday Londoners make around 6.5 million bus journeys, with about 130,000 of those trips made by travellers using a Disability Pass. Disabled people are 20% more likely to use the bus than other members of the public; it is therefore essential that busses are accessible.
This project has two aims:
1) To examine how wheelchair users interact with buses from both a biomechanical and a social science perspective in order to fully understand what helps and what hinders a wheelchair user’s journey.
2) To investigate how wheelchair users engage with research and what they believe should be researched and how.
The project will be the first time researchers from the UCL PAMELA facility and those from the Science & Technology Studies (STS) department will work together. PAMELA is set up to study interactions between people – individuals or crowds – and their immediate physical, sensory and cognitive environment. A recent addition to the PAMELA facility is their bus: a standard, London issue, double decker bus. Currently data from the bus (e.g. acceleration, on-board video, GPS) and a new force sensing hand-rim (developed by a UCL Enterprise award) can be synchronised to form a complete bus-person measuring system for wheelchair users.
How and why people engage with research has been investigated by STS researchers, who conducted a series of ESRC-funded projects about volunteers experiences participating as ‘subjects’ in an on-going biomedical physics research project. The volunteers were interviewed in depth. This research showed how volunteers counter the notion of being ‘guinea-pigs’ or passive research material, instead finding ways to play active and engaged roles during their participation. The roles people take subsequently affects how they behave in experiments and therefore impacts the results.
This pilot study will focus on a segment of London’s disabled passengers, wheelchair users. It will ask a small purposive sample (c.10) of users to board a bus under different conditions (e.g. crowded, different ramp gradients) while measuring the biomechanics of doing so. The same users will then be asked to take part in a qualitative interview. The interview will explore their experiences as bus users and, their experience of taking part in the experiment and more innovatively, explore how they might shape on-going research taking place at UCL on making buses more wheelchair-friendly. Therefore, at the very start of this body of research the users are involved in shaping the scope and the way in which the experiment is conducted. The interviews will also investigate what people believe should be self-reported in a style akin to ‘citizen science’ and what would be better tested in a laboratory setting.
The engineering aspects of the research will be conducted by the technical team at PAMELA and the data will be analysed by Catherine Holloway using software already written. The interviews and will be undertaken by a student as a dissertation project for the MSc in Science, Technology, Medicine and Society at UCL. Interviews will be transcribed and analysis will be aided by Nvivo qualitative data analysis software.
- Lead Applicant: Dr Stephanie Bird, Lecturer in German (UCL SELCS)
- Main Collaborator: Dr Peter Zusi, Lecturer in Czech with Slovak Literature (UCL SSEES)
Dr Mark Hewitson, Senior Lecturer in German History, UCL SELCS
Dr Lesley Caldwell, Honorary Reader in the Psychoanalysis Unit.
Dr Joanna Moncrieff, Senior Clinical Lecturer in the Mental Health Sciences Unit.
Dr Sushrut Jadhev, Senior Clinical Lecturer in the Mental Health Sciences Unit.
The project ‘Medical (In)humanities’ is a multi-disciplinary exploration of the ways in which the practice and theory of medicine has undermined or consolidated notions of humane behaviour. The project is the fourth in a series of research collaborations based in the German Department (see: http://www.ucl.ac.uk/german/german/aboutus/research). The current project was conceived as one that has events central to German and Austrian history and culture at its core: the psychoanalytic interventions of Freud and Jung, and the enmeshing of inhumanity and medicine under the National Socialists. These events, themselves embedded in traditions of thought, medical practice and history that extend well beyond the German-speaking nations, have had a fundamental and far-reaching impact on how we understand the relationship between medicine and (in)humanity. We therefore plan to broaden the scope of the project, already inter-disciplinary, beyond German-related material.
The title ‘Medical (in)humanities’ is a provocative response to the field of medical humanities and is designed to explore the assumptions underlying the very notion of ‘inhumanity’ in order to define what is humane. The concept of ‘inhumanity’ can already elicit objections on philosophical and ethical grounds, just as the naïve postulation of what is ‘humane’ itself reinforces particular constructions of the human and its Other. The term ‘medical humanity’ readily aligns medical discourses with moral value and notions of the Good, but leaves open the question of whose ‘good’ is at stake. Thus ideas of the bio-political point to the modern state’s claims to control over its citizens – through medicine and medical discourse – as population and as body, whether in the Nazi camps or in the use of torture in the fight against terrorism. The ideal of ‘the good of the patient’ is inseparable from wider discourses that may directly undermine it, such as the aspirations for the universal healthy body, healthy race or healthy use of social resources. Indeed, as psychoanalytic discourse suggests, what is deemed humane always comes at a high price.
Central to the notion of medical (in)humanity is the role that empathy plays in the definitions of personhood, usually equated with human personhood. The importance of science to the understanding of the body, medicine and diagnosis has frequently displaced the role of empathy in healing. The objectification of the body as a complex mechanism, pervasive now in the growing trend to reduce the understanding of affect through neuroscience, often runs contrary to concerns in the humanities with understanding the subject’s relation to the other through empathy. This tension is also manifested within clinical practices that are medical and those that insist upon the value of therapeutic interaction to address traumatic symptoms.
The aim of the project is to open up what is already an inter-disciplinary venture to further avenues. Key areas of exploration will be political theory, history, discourses of sovereignty and subjectivity, human rights and security, trauma and empathy, ethics and medical ethics, and the interplay of medicine and culture.
- Lead Applicant: Dr. Michelle de Haan (UCL Institute of Child Health)
- Main Collaborator:Dr. Naomi Dale (UCL Psychology)
- Additional Collaborators:
Dr. Chris Clark (UCL Institute of Child Health)
About 4 in every 10,000 infants born each year in the UK will be newly diagnosed with severe visual impairment (VI) or blindness by their first birthday. While this incidence is low, the associated life-long burden of disability and its economic costs are high. Children with visual impairment are also at risk for delays in cognitive functions including shifting and maintaining attention, mental representation of space and difficulties in social understanding. These difficulties create significant challenges in the life of children with visual impairment limiting their academic achievement and impacting on their wellbeing. The vulnerability to poor outcomes in specific areas of development persists even in children with high general cognitive function.The reason for this is currently not known, but it is likely due both to their compromised vision and its knock-on effects on brain development, extending beyond neural regions for basic visual processing.
We will examine the impact of low levels of functional vision on development empirically in school-aged children with mild to moderate, severe and profound visual impairment. We aim to recruit 60 children with different levels of vision and a matched control group with 20 sighted, typically developing children. This work is needed because, while prior work shows that the presence of even low levels of visual function in visually impaired infants initially has a protective role, there is also evidence to suggest that this advantage is drastically reduced by the time children reach school age. Mid-childhood is a particularly important time during development as children are expected to function more independently and interact with peers in the school environment.
The UCL Small Grant will be used to cover material costs for an integral part of the project. Neuropsychology aims to relate behaviours to the function and structure of areas of the brain. Standardised test batteries are used to compare test performance of individuals or groups to the normative sample of the test. This study is the first study to obtain a measure of the cognitive profile of school age children with different levels of VI. General ability, language skills, executive function and social understanding will be assessed. We will use a battery of neuropsychological tools that is suitable for children with VI and allows a direct comparison to past and future studies about VI in other age groups. Further, the parents of the children will fill in questionnaires to measure everyday behaviour and interaction with the caregivers. The grant money will be used to purchase the test and questionnaire forms for this study.
Further, the grant money will be used to refund travel expenses for the families. The families of children with VI will not receive any payment to take part in this study. In order to reduce the burden for the families, we will refund travel expenses up to Â£30 per family. We will mostly recruit families from the Greater London Area.
- Lead Applicant: Gustav Milne (UCL Institute of Archaeology)
- Main Collaborator: Dr Benjamin Gardener Sood (UCL Epidemiology and Public Health)
- Additional Collaborators:
Dr Matthew Pope UCL Institute of Archaeology
Jemima Stockton BSc MSc UCL Epidemiology & Public Health
Samir Singh Arsenal-in-the-Community team
Professor Christine Hawley Bartlett School of Architecture
Professor Graham Rook UCL Centre for Clinical Microbiology
Professor Kate Bowers UCL Dept of Security & Crime Science
This project requires collaboration between the Institute of Archaeology and the Department of Epidemiology and Public Health, as well our external partner, the Arsenal-in-the-Community (AITC) team. The latter run successful sports and educational programmes in inner-city schools in Camden, Islington and Hackney. We would like to reconfigure and extend their valuable work, through a pilot programme that builds on the Evolutionary Determinants of Health concept, which could have a major positive long-term impact on urban wellbeing in London. The AITC team wish to collaborate with UCL in developing this pilot project, which aims to enhance the wellbeing of children in some of London's most socioeconomically disadvantaged estates.
The grant would support preparation for a pilot project promoting positive behavioural change. With 21% of London’s primary school children classified by the NHS as obese, it is clear that more must be done to encourage healthy living. Together with the pressing need to change eating habits is the imperative to increase participation in physical activity, be it sport, dance or even regular walking. The link between obesity and the increase in risk of type 2 diabetes is clearly documented, as is an alarming rise in vitamin D deficiency, partially a result of modern cultural changes in which children spend less time out of doors.
The worrying research graphically illustrates the case for developing more effective nutritional and exercise regimes: the key concern is not just to oblige children to exercise while in class, but to encourage them to live healthier and less inactive lives after school. If these challenges are not addressed at this early stage, future demands on the NHS will be unsustainable.
Our project considers the challenge from the innovative perspective of the Evolutionary Determinants of Health. This research programme explores the premise that our brains and bodies are still essentially the same as those of our Palaeolithic ancestors who were adapted for a life revolving around particular diet and activity regimes, small-scale societies and close engagement with the natural world. Our current sedentary urban culture is markedly at variance with many of these deep-seated evolutionary imperatives but, armed with these evolutionary insights, we can now suggest behaviours that better integrate our ancient biological legacy with the daily demands of 21st-century urban life.
We wish to pilot these protocols through the project that this grant will enable us to develop, while promoting the work through the web site and an evaluation report. A paper will also be presented at a conference planned in collaboration with the Bartlett on “Town Planning & the Evolutionary Determinants of Urban Wellbeing”. This will cover associated themes considering urban greenspace, parks and playing fields together with pedestrianisation and cycling schemes. Our project thus uses our understanding of the past to challenge the present and change the future.
- Lead Applicant: Dr Rodney Reynolds (UCL Institute for Global Health)
- Main Collaborator: Dylan Kneale (UCL Civil, Environmental & Geomatic Engineering, International Longevity Centre)
- Additional Collaborators:
TrueBlue Health Consultancy (Vince Ion & Bob Fryer)
The Royal Society for Public Health (Richard Parrish)
Building on the findings of a recently completed and successful EU funded grant, Webwise (10/2010 - 9/2012), which was held by Dr Reynolds with consortium partners from Europe (including TrueBlue Consultancy), this small grant proposal seeks to demonstrate the value of social web technologies in healthy aging. Webwise identified barriers to public health education and training and how those could be overcome using social web technologies.
UCL students involved in the Webwise research provided evidence that university and community based organisations (CBOs) could collaborate successfully to develop online/offline interventions that promote improved health in vulnerable populations. With this current small grant proposal, we seek to apply the students' insight to problems of aging. In particular we are interested in targeting multi-sectoral organisations that work with and care for people suffering from dementia.
With our partner organisations we propose to run a workshop for multi-sectoral CBOs. These will focus on providing health services to people with dementia and their families and carers. The purpose of the workshop is to demonstrate how social media can be used effectively within organisations and between organisations and their clients. We seek to address three common problems in healthy aging: social isolation, care monitoring and training/education of staff and family/community carers.
The workshop is the major intended outcome of our proposed collaboration. It will be the culmination of a period of desk research and face-to-face inquiry over the next eight months. The desk research is intended to extend the already extant literature review performed in the context of Webwise and to update it with newly published material. It will also focus identified literature around the target areas of social isolation, care monitoring and training/education. The face-to-face inquiry will identify organisational and interpersonal priorities of relevant stakeholders. The content of the workshop will be based on the findings of these activities combined with techniques for overcoming barriers to social media use identified by Webwise. Attendees to the workshop will include leading policy-makers and practitioners from organisations with remits including health care delivery, older people, carers and dementia, including representatives from central and local government and the voluntary sector. The workshop will include a presentation of the potential of Webwise research findings to an influential audience, as well as a discussion of ways implementing the research recommendations to change current practice.
Rodney Reynolds (UCL, Institute for Global Health) will be lead on the desk research activities and advise the face-to-face inquiry; TrueBlue (Vince Ion and Bob Fryer) will lead on implementing the face-to-face inquiry with other business partners (including Richard Parrish, The Royal Society for Public Health); Dylan Kneale (UCL: Civil, Environmental & Geomatic Engineering /International Longevity Centre) will lead on organising the workshop in conjunction with the other project partners.
The project will be realised between August 2013 and July 2014. Principle information gathering will take place through the winter of 2014. The workshop will occur in the Spring of 2014. Evaluation of the workshop will be undertaken by the partner organisations in early Summer 2014.
Lead Applicant: Dr David Wheeler (UCL Internal Medicine, Centre for Nephrology)
Main Collaborator: Dr Joesph Low (UCL Mental Health Sciences Unit)
Dr Helen Alston (geriatric nephrology phD student)
Elderly patients with advanced Chronic Kidney disease (CKD) and multiple co-morbidities have been shown to have high symptom and depression scores in cross-sectional studies.
However, little is known about trajectory over time and the effect of interventions such as dialysis. Dr Wheeler and Dr Alston are studying the use of the distress thermometer (DT), a simple self-scoring visual analogue scale widely used in cancer settings, in advanced CKD patients around the start of dialysis.
We plan to collaborate with Dr Low, a noted palliative care researcher, to carry out semi-structured qualitative interviews both in patients with CKD and on dialysis, about their experiences of distress. This will guide future research.
Factors which influence distress levels in elderly CKD patients are unknown and can be elucidated using semi-structured in-depth interviews.
Fully informed written consent will be obtained in line with GCP recommendations, including permission to audio-record interviews. The interviewer will be appropriately trained, and will be sensitive to participants’ needs. Participants will be offered appropriate psychosocial support if needed.
We will recruit LCC patients who express a preference for each treatment modality (HD, PD and CM) and are likely to progress to RRT or cross the putative dialysis threshold (eGFR 8.6ml/min) in the study period. Suitable patients will be purposively selected to represent our elderly LCC population (age, sex, ethnicity, social, functional and carer status) and approached directly by the LCC team on an expectant basis. Additionally, the sample population will be enriched by including patients with particularly high and low DT scores.
A total of 16 interviews will be conducted. We anticipate, based on previous studies, that six participants from each modality will be sufficient to ensure a saturation of themes and to cover the varied experiences during a typical LCC/RRT “journey”. If however new themes are still emerging we will recruit more patients. Medical interpreters will be used if required.
We will conduct and record semi-structured interviews in a place of the patient’s choice clinical setting or home (subject to risk assessment), using the structure outlined below. Each interview will last 30-60 minutes, or longer if the participant has further issues to discuss and is keen to proceed.
1. What do you understand by “distress”?
2. What makes you feel distressed?
3. Describe some occasions when you felt distressed.
4. Does anything about your kidney disease distress you?
5. When you feel distressed, what do you do about it? How do you cope?
6. Do we do anything in kidney clinic to make you feel better? Do we do anything that makes it worse?
7. Could we do more to help you feel less distressed?
8. Could anyone else do anything to relieve your distress?
9. If you do not suffer much distress, why do you think that is?
Analysis of interviews
Each interview will be transcribed verbatim. The transcript will be transferred onto NVivo9, a software programme for analysis of qualitative data, and analysed using thematic content analysis.
We will identify key themes in the transcript and count the frequency of these themes in the text. We will undertake a thematic analysis of the transcripts to explore patients’ understanding and experience of “distress” and factors contributing to it. Texts will be re-read in their entirety to confirm key themes and place individual accounts in the context of information about each participant.
To ensure validity and reliability, theme generation will be carried out independently by HA and JL, who will then meet to confirm themes identified.
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