Research Methods in Palliative Care

by Addington-Hall, Julia M.; Bruera, Eduardo; Higginson, Irene J.; Payne, Sheila

• ISBN13: 9780198530251
• ISBN10: 0198530250
• Edition: 1st
• Format: Paperback
• Copyright: 2007-06-28
• Publisher: Oxford University Press

Summary

Second author, Eduardo Bruera, is with the Univ. of Texas, Houston. Provides an introduction to the palliative care use of clinical trials, survey research, epidemiological research methods, and qualitative research methods. Topics include ethical and practical issues in designing and conduction clinical trials in palliative care, and more. For researchers. Softcover.

Author Biography

Professor Julia M Addington-Hall joined the School of Nursing and Midwifery, Southampton University as Professor in End of Life Care in 2004. She now heads the Cancer, Palliative and End of Life Care Research Group. Her current research programmes include palliative care beyond cancer (including stroke, heart failure and MND); depression at the end of life; the development and validation of an after-death questionnaire for bereaved people (VOICES), and evaluating health and social care services for people in the last months of life. She is co-Director of the new 'Cancer Experiences Collaborative' (CECo), funded by the UK National Cancer Research Institute. She is Chair of the UK Palliative Care Research Society. She is an editor of the journal 'Palliative Medicine', and a member of the editorial board of 'Journal of Pain and Symptom Control'. She has lectured extensively in the UK and abroad.
Dr. Eduardo Bruera currently holds the F.T. McGraw Chair in the Treatment of Cancer and Chair of the Department of Palliative Care and Rehabilitation Medicine. He previously worked at the University of Alberta, helping to develop the Division of Palliative Care Medicine and the Edmonton Regional Palliative Care Program. Among his research interests are cancer pain, cachexia, fatigue, delirium, communication, and outcomes research in palliative care. He has a strong interest in the global development of palliative care and has collaborated for many years with the World Health Organization/Pan American Health Organization and served as Chair of the International Association of Hospice and Palliative Care (IAHPC) between 2000 and 2004. In addition to having published more than 700 papers, abstracts, and book chapters, Dr. Bruera has trained hundreds of physicians who are currently practicing palliative care around the world. Professor Irene Higginson is particularly known for her development of methods to assess the quality and outcomes of palliative care, evaluation of treatments and epidemiologically based assessment of problems and need in cancer and non-cancer. She has developed undergraduate and postgraduate education programmes for doctors, nurses and other professions, including a multi-professional Masters programme for the leaders in palliative care for the future. Irene Higginson has published widely on palliative care, quality of life measurement, and evaluation of services and therapies, in scientific journals and in textbooks. She has developed and validated two tools used widely in the UK and many other countries to help in the assessment of patients and families and in the quality of care, led the evidence review for the NICE guidance on Supportive and Palliative Care, and the WHO new guidance on Better Palliative Care for Older People. Professor Sheila Payne is a health psychologist with a background in nursing. She holds the Help the Hospices Chair in Hospice Studies based at the Institute of Health Research and works in collaboration with the International Observatory on End of Life Care at Lancaster University. Professor Payne has a long track record in palliative care research and scholarship. She previously led the Palliative and End-of-Life Care Research Group at the University of Sheffield. Her research agenda focuses on palliative and end-of-life care for older people and bereavement support. She holds a number of major grants in these areas and supervises PhD students. She co-directs the NCRI funded Cancer Experiences Collaborative with Professor Addington-Hall. Sheila has published widely in academic and professional journals, written ten books, and edits the 'Health Psychology' book series published by the Open University Press with Sandra Horn.

Table of Contents

List of contributors	p. xi
Introduction	p. 1
The challenges of palliative care research	p. 2
Ethical issues	p. 4
Outline of the book	p. 7
Conclusion	p. 8
References	p. 8
Clinical trials
Principles of designing clinical trials in palliative care	p. 13
Introduction	p. 13
Clinical trial terminology	p. 13
Basics of clinical trial design	p. 16
Randomization	p. 19
Blinding	p. 22
Determining sample size of a clinical trial	p. 23
Conclusion	p. 25
References	p. 26
Ethical and practical issues in designing and conducting clinical trials in palliative care	p. 27
Introduction	p. 27
Ethical issues	p. 28
Practical issues	p. 33
Administrative issues	p. 37
References	p. 38
Survey research
Survey design	p. 45
Introduction	p. 45
What is survey research?	p. 45
Sampling	p. 46
Probability sampling procedures	p. 49
Sampling error	p. 52
Sampling size	p. 53
Response rate	p. 55
Non-probability sampling procedures	p. 57
Conclusion	p. 59
References	p. 59
Survey research: methods of data collection, questionnaire design and piloting	p. 61
Introduction	p. 61
Methods of data collection	p. 61
Conducting personal and telephone interview surveys	p. 65
Conducting postal surveys	p. 68
The design of survey instruments	p. 71
Testing survey instruments	p. 78
Conclusion	p. 80
References	p. 81
Epidemiological research methods
Experimental and quasi-experimental designs	p. 85
Introduction	p. 85
Types of study design	p. 86
Observational studies	p. 86
Quasi-experimental studies	p. 92
Conclusions	p. 95
References	p. 96
Outcome measurement	p. 99
What do we mean by outcome measures?	p. 99
Why should outcomes be measured in research?	p. 100
Issues in choosing an outcome measure for a study	p. 100
Moving to a more person-centred and individualized approach in measuring outcomes	p. 103
Choice of generic or specific outcome and quality of life measures	p. 104
What about developing country contexts?	p. 108
Conclusion	p. 110
References	p. 110
Systematic reviews	p. 115
What is a systematic review?	p. 115
Why do systematic reviews?	p. 116
Are systematic reviews relevant in palliative care?	p. 117
When not to do a systematic review	p. 117
When systematic reviews are useful	p. 118
Defining the aims and questions	p. 118
Systematic review methods	p. 119
Systematic review methods for qualitative studies	p. 132
Conclusion	p. 134
References	p. 134
Qualitative research methods
Qualitative methods of data collection and analysis	p. 139
Introduction	p. 139
What are qualitative methods?	p. 139
When should qualitative methods be used?	p. 140
Collecting data for qualitative analysis	p. 144
Types of qualitative data	p. 144
Ways of gathering qualitative data	p. 145
Transforming and processing data for analysis	p. 149
Analysing data qualitatively	p. 150
Examples of types of qualitative data analysis	p. 153
Assessing the quality of qualitative methods	p. 158
Conclusions	p. 159
Suggested further reading	p. 159
References	p. 159
Ethical and practice issues in qualitative research	p. 163
Introduction	p. 163
'Sensitive' research	p. 164
Who am I? The role of reflexivity	p. 166
Supervision, safety and support	p. 167
Negotiating roles and relationships	p. 169
Engaging in ethical research practice	p. 171
Opting in-ensuring consent is informed	p. 172
From the outside looking in, from the inside looking out	p. 174
Issues in recording data	p. 176
Conclusion	p. 177
References	p. 177
Evaluating qualitative research	p. 181
Introduction	p. 181
What are the different criteria relevant for assessing qualitative research?	p. 182
Conclusion	p. 188
References	p. 188
Mixed methods for evaluation research	p. 191
What is evaluation research and how does it differ from 'traditional' research?	p. 191
Approaches to evaluation research	p. 194
Challenges of evaluation research	p. 205
Selecting an approach to evaluation	p. 205
Conclusion	p. 206
References	p. 207
Ethnography	p. 211
Introduction	p. 211
What is ethnography?	p. 212
A brief methodological history of ethnography	p. 216
Issues of research design and process in ethnography	p. 216
Conclusion	p. 225
References	p. 225
Documentary analysis and policy	p. 229
Introduction	p. 229
Policy	p. 230
Policy analysis	p. 232
Discourse and discourse analysis	p. 235
Foucault's understanding of discourse	p. 236
Undertaking discourse analysis	p. 238
An analysis of palliative care discourse	p. 241
Conclusion	p. 244
References	p. 244
How to...
How to develop a research question	p. 249
Introduction	p. 249
The importance of defining a clear research aim	p. 249
Generating the research idea	p. 251
Prioritizing the research ideas	p. 253
Turning the idea into a research question	p. 253
Conclusion	p. 256
References	p. 256
Writing a research proposal	p. 259
Introduction	p. 259
How are applications appraised?	p. 260
Making the application	p. 264
Common failings	p. 270
Six top tips for success	p. 271
References	p. 273
How to gain research ethics approval	p. 275
Introduction	p. 275
What steps can researchers take to facilitate ethics approval?	p. 276
Conclusion	p. 282
References	p. 282
How to use a statistician	p. 283
Statistics and statisticians	p. 283
How a statistician can help with your research	p. 284
Designing a quantitative study	p. 284
Estimating the sample size	p. 285
Choosing software for data management and analysis	p. 287
Collecting data for the study	p. 288
Analysing data for the study	p. 288
Writing up the study	p. 289
How you can help the statistician	p. 289
Where to find a statistician	p. 290
Conclusions	p. 290
References	p. 290
How to write a paper	p. 293
How to write the paper	p. 293
The submission process	p. 297
But I can't write	p. 299
Motivations for writing	p. 301
Conclusion	p. 303
References	p. 303
Index	p. 305
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