Palliative and end-of-life care are concerned with the physical, social, psychological, and spiritual care of people with advanced disease and serious illness. They affect people in all societies, all countries, and are growing fields post-Covid. Changing demographics and treatments mean that people are living longer with serious illness and multiple conditions, often needing symptom control and complex care and support. Research in these areas present a particular challenge, both because of the ethical and practical difficulties inherent in working with very ill patients and their families, and because of the range of research questions considered to be within the domain of palliative care.
Building on the first edition, this book provides an introduction to research methods in the fields of palliative, supportive, and end-of-life care, and complex patients. Edited by six experienced palliative care academics with acknowledged expertise and international reputations in this field, this book is both authoritative and accessible. It encompasses methods used in both clinical and health services research, covering methodological theory, design, measures, and practice and case examples across the entire scope of research. The book has been fully updated and includes the latest developments such as use of big data and forming research collaborations.
This will be an essential methodological book for clinicians, academics, researchers and educators, and especially those undertaking a MSc, PhD, or early career researchers in palliative care and related fields.
Provides an introduction to research methods as applied to the unique needs of palliative, supportive, and end-of-life care, covering methodological theory, design, measures, and practice and case examples.
Part
1. Theory and practice
Chapter 1: Nancy Preston and David Currow: Why research palliative,
supportive, and end-of-life care?
Chapter 2: Sophie Pask and Fliss E. M. Murtagh: Recognizing complexity in
palliative, supportive, and end-of-life care settings and studies
Chapter 3: Massimo Costantini and Irene J. Higginson: Overview of main study
designs and approaches
Chapter 4: Ludovica De Panfilis and Meera Agar: Designing and conducting
clinical trials and research in palliative care and end of life: ethical and
mental capacity, data integrity, and practical issues
Chapter 5: Lisa Jane Brighton, Margaret Ogden, and Catherine J. Evans: Public
and community involvement in palliative care research: principles and
practicalities
Part
2. Specific research designs and approaches in palliative, supportive,
and end-of-life care
Chapter 6: Joachim Cohen and Kenneth Chambaere: Survey research: design,
methods of data collection, questionnaire design, and conduct
Chapter 7: Ųrnulf Paulsen, Marianne Jensen Hjermstad, and Stein Kaasa: Design
and delivery of clinical trials: from idea to final publication
Chapter 8: Carlos Seiēa Cardoso and Barbara Gomes: Development and evaluation
of complex interventions
Chapter 9: Lorna K. Fraser and Stuart W. Jarvis: Epidemiological research,
including big data
Chapter 10: Philip J. Larkin and Michael Connolly: Overview of qualitative
methods
Chapter 11: Nancy Preston and Sheila Payne: Qualitative methods of data
collection and analysis
Chapter 12: Jacqueline Alcalde, Breffni Hannon, and Camilla Zimmermann: Mixed
methods research
Chapter 13: Suzanne Guerin, Catherine Jordan, and Philip J. Larkin: Process
evaluation
Chapter 14: Margaret H. Sandham and Richard J. Siegert: Outcome measurement
Chapter 15: Charles Normand and Peter May: Health economic methods in
palliative, supportive, and end-of-life care
Chapter 16: Magnus Ekström, Michele Hilton Boon, and Daisy J. A. Janssen:
Systematic reviews
Chapter 17: Kate Flemming: Qualitative evidence synthesis
Part
3. How to do it
Chapter 18: India Tunnard and Matthew Maddocks: How to develop a research
question
Chapter 19: Cinzia Brunelli and Morena Shkodra: How to write and register a
research protocol
Chapter 20: Sharon Kaasalainen and Tamara Sussman: How to establish and grow
the right team
Chapter 21: Jeroen Hasselaar, Maaike Rijpstra, and Ian Koper: How to gain
approval from the ethical review board
Chapter 22: Lesley Dunleavy: How to ensure good recruitment
Chapter 23: Kim Beernaert and Kim Eecloo: How to ensure good-quality data by
avoiding missing data: strategies for preparing and monitoring studies
Chapter 24: Anna E. Bone and Maja Furlan de Brito: How to use reporting
guidelines from the EQUATOR Network
Chapter 25: Luc Deliens and Julia M. Addington-Hall: How to write a research
paper for peer-reviewed journals
Chapter 26: Linda R. Brown and Linda James: How to disseminate palliative
care research findings
Chapter 27: Guillaume Economos and Irene J. Higginson: How to establish
national and international research collaborations
Chapter 28: Richard Harding, Oladayo Ayobami Afolabi, and Eve Namisango: How
to conduct global research in palliative care
Chapter 29: Cheng-Pei Lin and Jane Lowers: How to study for a PhD, survive,
and even enjoy it
Chapter 30: Catherine Walshe: How to review a paper submitted to a journal
Chapter 31: Lesley E. Williamson and Katherine E. Sleeman: How to improve
your research impact
Chapter 32: Irene J. Higginson: How to win a research grant
Irene J. Higginson, OBE, is Professor of Palliative Care and Policy and Founding Professor of Cicely Saunders Institute, King's College London. She is an honorary consultant in palliative medicine, NIHR Emeritus Senior Investigator, Fellow of the Academy of Sciences, and Scientific Director for the charity Cicely Saunders International. Professor Higginson is active in research and education and in the top 1% of highly cited academics. She teaches MSc, medical and PhD students, and through her current research programmes, investigates treatments, symptom management, access and services in palliative care. She has published over 700 articles in peer-reviewed journals, plus several books. Professor Higginson's research has pioneered better ways to measure outcomes and quality of life, evaluate palliative care, epidemiology, effectiveness, psychosocial care, symptom assessment, breathlessness, cachexia/anorexia, and multi-morbidity.
Eduardo Bruera obtained his medical degree from the University of Rosario, Argentina. He trained in medical oncology and in 1984 relocated to the University of Alberta in Edmonton, Canada, where he directed the Clinical and Academic Palliative Care programs until 1999. He then joined The University of Texas MD Anderson Cancer Center where he currently holds the F.T. McGraw Chair in the Treatment of Cancer and is the Chair of the Department of Palliative, Rehabilitation and Integrative Medicine. Dr Bruera's main clinical interest is the care of the physical and psychosocial distress of patients with advanced cancer and the support of their families. He has more than 1300 peer-reviewed publications and given more than 900 major invited lectures. He has received several national and international awards, including, the American Academy of Hospice and Palliative Medicine Lifetime Achievement Award, and the Sigillum Magnum by the University of Bologna, Italy.
Massimo Costantini is a physician, specialising in oncology, who spent his career as a clinician and researcher. His research interests are in the areas of palliative care, quality of life, and psycho-oncology. He trained as an epidemiologist at the Clinical Epidemiology Unit of the National Cancer Institute in Genoa. His main research activities in palliative care focused on studying multidimensional problems of advanced cancer patients, and on investigating the effect of palliative care services and other complex interventions on quality of care. He was Medical Director of a Hospice in Genoa, and he took the responsibility of the development and management of the Ligurian Palliative Care Network. In April 2013 he moved to Reggio Emilia, where he was Medical Director of the newly established Hospital Palliative Care Unit, and subsequently Scientific Director of the Research Institute.
David C. Currow is a clinician and researcher with a track record in health systems research, randomised control trials, and working with large datasets to improve the quality of care. Areas of particular interest include the population of people with life-limiting illnesses who are not referred to specialist palliative care services, and their outcomes. His health service research includes developing Needs Assessment Tools in specific diagnoses. It also includes robust evaluations of different models of service delivery. His symptom control studies include a range of fully powered, multi-site, double-blind studies on widely used interventions in symptom control. This includes particular emphasis on studies in breathlessness and cachexia. Other works include the population burden of symptoms and correlative laboratory science for the randomised trials that are being done.
Philip J. Larkin is the Kristian Gerhard Jebsen Chair of Palliative Care Nursing at the University Hospital Centre (CHUV), affiliated to the Institute for Higher Education and Research in healthcare (IUFRS), Faculty of Biology and Medicine, University of Lausanne. He has over 35 years of experience in the palliative care sector, both clinically and academically. As Professor of Clinical Nursing in Palliative Care at University College Dublin, Ireland, he led the development of the All-Ireland Institute for Hospice and Palliative Care, a public health project bringing together The Republic of Ireland and Northern Ireland to improve palliative care outcomes. He was President of the European Palliative Care Association (EAPC) from 2015 to 2019. His research has focused on access to palliative care for vulnerable populations and marginalized groups. He currently leads a nursing research team at the CHUV and continues to lecture nationally and internationally on palliative and end-of-life care.
Nancy Preston is the Co-Director of the International Observatory on End-of-Life Care at Lancaster University and a Professor of Supportive and Palliative Care. Nancy's research focusses on palliative care and how best to integrate it into general healthcare systems including oncology and respiratory units, ICU, the community, hospices, and care homes. Some of this research involves evaluating complex interventions in large trials. She is involved in seven European studies which focus upon service delivery, enhancing shared decision making, and symptom management. She is part of the NIHR/Department of Health Policy Research Unit for Palliative Care. At Lancaster university she teaches on systematic review methods, trial designs and qualitative research. She supervises PhD students from all over the world through the Lancaster University PhD in Palliative Care online programme.
