Research Methods in Palliative Care
, by Addington-Hall, Julia M.; Bruera, Eduardo; Higginson, Irene J.; Payne, Sheila- ISBN: 9780198530251 | 0198530250
- Cover: Paperback
- Copyright: 6/28/2007
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.
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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