El. knyga: Research methods in palliative care

List of contributors		xi
Introduction		1	(12)
Julia M. Addington-Hall
The challenges of palliative care research		2	(2)
Ethical issues		4	(3)
Outline of the book		7	(1)
Conclusion		8	(1)
References		8	(5)
Section 1 Clinical trials
Principles of designing clinical trials in palliative care		13	(14)
Michael I. Bennett
Introduction		13	(1)
Clinical trial terminology		13	(3)
Basics of clinical trial design		16	(3)
Randomization		19	(3)
Blinding		22	(1)
Determining sample size of a clinical trial		23	(2)
Conclusion		25	(1)
References		26	(1)
Ethical and practical issues in designing and conducting clinical trials in palliative care		27	(18)
Yolanda Zuriarrain Reyna
Michael I. Bennett
Eduardo Bruera
Introduction		27	(1)
Ethical issues		28	(5)
Practical issues		33	(4)
Administrative issues		37	(1)
References		38	(7)
Section 2 Survey research
Survey design		45	(16)
Julia M. Addington-Hall
Introduction		45	(1)
What is survey research?		45	(1)
Sampling		46	(3)
Probability sampling procedures		49	(3)
Sampling error		52	(1)
Sampling size		53	(2)
Response rate		55	(2)
Non-probability sampling procedures		57	(2)
Conclusion		59	(1)
References		59	(2)
Survey research: methods of data collection, questionnaire design and piloting		61	(24)
Julia M. Addington-Hall
Introduction		61	(1)
Methods of data collection		61	(4)
Conducting personal and telephone interview surveys		65	(3)
Conducting postal surveys		68	(3)
The design of survey instruments		71	(7)
Testing survey instruments		78	(2)
Conclusion		80	(1)
References		81	(4)
Section 3 Epidemiological research methods
Experimental and quasi-experimental designs		85	(14)
Massimo Costantini
Irene J. Higginson
Introduction		85	(1)
Types of study design		86	(1)
Observational studies		86	(6)
Quasi-experimental studies		92	(3)
Conclusions		95	(1)
References		96	(3)
Outcome measurement		99	(16)
Irene J. Higginson
Richard Harding
What do we mean by outcome measures?		99	(1)
Why should outcomes be measured in research?		100	(1)
Issues in choosing an outcome measure for a study		100	(3)
Moving to a more person-centred and individualized approach in measuring outcomes		103	(1)
Choice of generic or specific outcome and quality of life measures		104	(4)
What about developing country contexts?		108	(2)
Conclusion		110	(1)
References		110	(5)
Systematic reviews		115	(24)
Marjolein Gysels
Irene J. Higginson
What is a systematic review?		115	(1)
Why do systematic reviews?		116	(1)
Are systematic reviews relevant in palliative care?		117	(1)
When not to do a systematic review		117	(1)
When systematic reviews are useful		118	(1)
Defining the aims and questions		118	(1)
Systematic review methods		119	(13)
Systematic review methods for qualitative studies		132	(2)
Conclusion		134	(1)
References		134	(5)
Section 4 Qualitative research methods
Qualitative methods of data collection and analysis		139	(24)
Sheila Payne
Introduction		139	(1)
What are qualitative methods?		139	(1)
When should qualitative methods be used?		140	(4)
Collecting data for qualitative analysis		144	(1)
Types of qualitative data		144	(1)
Ways of gathering qualitative data		145	(4)
Transforming and processing data for analysis		149	(1)
Analysing data qualitatively		150	(3)
Examples of types of qualitative data analysis		153	(5)
Assessing the quality of qualitative methods		158	(1)
Conclusions		159	(1)
Suggested further reading		159	(1)
References		159	(4)
Ethical and practice issues in qualitative research		163	(18)
Frances Sheldon
Anita Sargeant
Introduction		163	(1)
`Sensitive' research		164	(2)
Who am I? The role of reflexivity		166	(1)
Supervision, safety and support		167	(2)
Negotiating roles and relationships		169	(2)
Engaging in ethical research practice		171	(1)
Opting in---ensuring consent is informed		172	(2)
From the outside looking in, from the inside looking out		174	(2)
Issues in recording data		176	(1)
Conclusion		177	(1)
References		177	(4)
Evaluating qualitative research		181	(10)
Michele Crossley
Introduction		181	(1)
What are the different criteria relevant for assessing qualitative research?		182	(6)
Conclusion		188	(1)
References		188	(3)
Mixed methods for evaluation research		191	(20)
Christine Ingleton
Sue Davies
What is evaluation research and how does it differ from `traditional' research?		191	(3)
Approaches to evaluation research		194	(11)
Challenges of evaluation research		205	(1)
Selecting an approach to evaluation		205	(1)
Conclusion		206	(1)
References		207	(4)
Ethnography		211	(18)
Jane Seymour
Introduction		211	(1)
What is ethnography?		212	(1)
A brief methodological history of ethnography		213	(3)
Issues of research design and process in ethnography		216	(9)
Conclusion		225	(1)
References		225	(4)
Documentary analysis and policy		229	(20)
Margaret O'Connor
Introduction		229	(1)
Policy		230	(2)
Policy analysis		232	(1)
Discourse and discourse analysis		233	(3)
Foucault's understanding of discourse		236	(2)
Undertaking discourse analysis		238	(3)
An analysis of palliative care discourse		241	(3)
Conclusion		244	(1)
References		244	(5)
Section 5 How to ...
How to develop a research question		249	(10)
Laura Kelly
Patrick Stone
Introduction		249	(1)
The importance of defining a clear research aim		249	(2)
Generating the research idea		251	(2)
Prioritizing the research ideas		253	(1)
Turning the idea into a research question		253	(3)
Conclusion		256	(1)
References		256	(3)
Writing a research proposal		259	(16)
Chris Todd
Introduction		259	(1)
How are applications appraised?		260	(4)
Making the application		264	(6)
Common failings		270	(1)
Six top tips for success		271	(2)
References		273	(2)
How to gain research ethics approval		275	(8)
Peter Speck
Introduction		275	(1)
What steps can researchers take to facilitate ethics approval?		276	(6)
Conclusion		282	(1)
References		282	(1)
How to use a statistician		283	(10)
Malcolm Campbell
Statistics and statisticians		283	(1)
How a statistician can help with your research		284	(1)
Designing a quantitative study		284	(1)
Estimating the sample size		285	(2)
Choosing software for data management and analysis		287	(1)
Collecting data for the study		288	(1)
Analysing data for the study		288	(1)
Writing up the study		289	(1)
How you can help the statistician		289	(1)
Where to find a statistician		290	(1)
Conclusions		290	(1)
References		290	(3)
How to write a paper		293	(12)
Julia M. Addington-Hall
How to write the paper		293	(4)
The submission process		297	(2)
But I can't write		299	(2)
Motivations for writing		301	(2)
Conclusion		303	(1)
References		303	(2)
Index		305

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.