Methodology

The IOELC is widely known for leading innovations in research that draws upon social science methodologies including qualitative methods, mixed methods, systematic reviews and other types of evidence synthesis, combined with research designs that are of value to practitioners and organisations in end of life care. The methodology theme cuts across the other main themes. Our research has contributed to the outcomes of the Cancer Experiences Collaborative (www.ceco.org.uk) where we have undertaken work in narrative analysis, (see our Observatory Publications page for more details), and we are also involved in a number of studies looking at particular methodological challenges in conducting research in palliative and end of life care. The Cancer Experiences Collaborative is also working with the MORECare team to develop guidance on how to conduct research in palliative and end of life care research.

Further details about current and recently completed work are available using the links on this page.

Current projects

Metaphor in End-of-Life Care
For more information contact: Professor Sheila Payne

A journey or a battle? A crossroads or a fight? A stolen life or a gift?

How people talk about dying in terms of metaphors, or verbal imagery, is being analysed by researchers at Lancaster University.

The £218,000 project, funded by the Economic and Social Research Council, brings together expertise from linguists, computer scientists and a health psychologist from the University’s International Observatory on End of Life Care.

The ‘Metaphor in End of Life Care’ project focuses specifically on metaphors - words and phrases which describe one thing in terms of another.

Illness, emotions, relationships and death are among the experiences for which people use metaphors to express, reflect and shape views, feelings, attitudes and needs.

The team are scrutinising 1.5 million words used by patients, family carers and health care professionals in a bid to improve communications for those nearing the end of their lives, in consultation with the Lancaster Research Partners’ Forum - a group of local people with experience of research and of end of life care in the UK.

The project’s Principal Investigator and Head of Linguistics and English Language Professor Elena Semino explains: “Metaphors are often used to talk about experiences that are sensitive and emotional, or that might be taboo, and the choice of metaphor will reflect how we ‘see’ or feel about those experiences.

“For example, if we talk about being ill with cancer in terms of a journey with milestones and crossroads, we may experience things differently than if we talk about it in terms of a battle – fighting an enemy, winning, or losing. The competitive, heroic element of battle metaphors can be motivating for some people but demoralising for others.

“Different metaphors may be more or less appropriate for different people or for the same person at different times.”

The seven-strong project team are studying metaphors in a 1.5 million word corpus, a textual database, consisting of personal interviews and contributions to online forums. They will analyse and interpret each metaphor used, the context in which it is used, the implications for the individual’s experience, and differences within and across the three groups.

Combining qualitative and quantitative research methods, the project will exploit an innovative semantic annotation tool, embedded in a web-based system called ‘Wmatrix’, developed by project team member Dr Paul Rayson, a Senior Lecturer at Lancaster University’s School of Computing and Communications.

“This will enable us to identify metaphorical expressions more systematically than is currently possible with other corpus-based methods for the study of metaphor in large data sets,” said Dr Rayson.

Health psychologist and expert in end of life studies Professor Sheila Payne, another project team member, is keen that the study should be used to inform policy-making and the training of health professionals.

“By analysing the language people use, we should be able to come up with conclusions that improve communication between the three groups involved in end of life care,” she explained. “A better understanding of people’s uses of metaphor can help to identify possible sources of misunderstanding.”

The work is attracting significant interest from academics and health professionals in Europe and China who want to replicate the project in their countries.

An end-of-project event will take place in May 2014 at The Work Foundation in London when government officials involved in cancer and end of life care strategy, senior NHS officials and policymakers will be invited to hear and respond to the project findings.

There will also be places for senior academics involved in health research and for health practitioners involved in end of life care.

There will also be a web-based seminar at Lancaster University’s International Observatory on End of Life Care in April 2014.

Applicants: Elena Semino, Veronika Koller, Andrew Hardie and Zsofia Demjen (Linguistics and English Language), Paul Rayson (Computing and Communications) and Sheila Payne (International Observatory on End of Life Care)
Funded by: ESRC (Economic and Social Research Council)
Project start date: September 2012
Project end date: February 2014
Resources: Website: http://ucrel.lancs.ac.uk/melc/index.php
Developing research capacity in palliative care
For more information contact: Dr Nancy Preston

This small study aims to develop research capacity in palliative care. There are a number of barriers to developing research in palliative care not least attitudes of staff and ethics committees towards including vulnerable patients at the end of their life in research.

We interviewed staff from a research active hospice about their experience of being involved in research. We are then going to present the findings of this study as well as other research pertinent to developing research capacity at three one day conferences in local hospices; St. Catherine's in Preston, Trinity in Blackpool and Eden Valley in Carlisle.

Power point slides from the conferences are available through the Resources box below.

Applicants: Dr Nancy Preston, Janet Rigby, Prof Sheila Payne, Dr Susan Salt, Anita Griggs and Alison Parr
Funded by: Lancaster University
Project start date: May 2012
Project end date: October 2013
Resources: Welcome - Nancy Preston
RDS - Nancy Preston
Research in the community - Maurice Nagington
Research Active Hospice - Mary Turner
Interview Findings - Jean Hennings
Strategies to improve recruitment to research studies via healthcare professionals
For more information contact: Dr Nancy Preston

Recruitment is a problem for all researchers with an estimated 50% of studies reaching their recruitment targets (Treweek 2010). These numbers are lower for palliative and end of life care research. Since the introduction of the data protection act in the UK researchers can only access participants through healthcare providers. Researchers are then reliant upon health care staff to identify suitable participants and ask them if they can be approached to meet the researcher.

The Cancer Experiences Collaboration (CECo) methodology theme decided to conduct a review to identify potential strategies to improve recruitment via healthcare professionals. The review is registered with the Cochrane Methodology Group and involves researchers from Lancaster University, University of Manchester, University of Cambridge, Loughborough University and the University of Cardiff.

Applicants: Preston NJ
Funded by: Age UK (through a Department of Health grant)
Project start date: September 2009
Project end date: October 2013
Resources: Preston NJ, Farquhar MC, Walshe CE, Stevinson C, Ewing G, Calman LA, Burden S, Brown Wilson C, Hopkinson JB, Todd C. Strategies to increase participant recruitment to research studies by healthcare professionals (Protocol). Cochrane Database of Systematic Reviews 2012, Issue 9. Art. No.: MR000036. DOI: 10.1002/14651858.MR000036.
Public involvement in research and the Cancer Experiences Collaborative: The work of the research partners
For more information contact: Dr Katherine Froggatt

The role of users or patient and public involvement in research is increasingly being recommended in the UK. Users can have an impact on the design, conduct and analysis of research. We have worked with service representatives as research partners through the Cancer Experiences Collaborative and we are evaluating the impact of being involved in such work through a qualitative study. Interviews have been undertaken with eight participants and analysis of the data is underway.

Applicants: Froggatt K, Preston NJ, and Turner MJ
Funded by: Cancer Experiences Collaborative (CECo)
Project start date: December 2011
Project end date: June 2013
Resources:

 

International Research

The Observatory continues to engage with a wide range of international projects, which can be viewed by clicking here.

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