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.
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: Ørnulf Paulsen, Marianne Jensen Hjermstad, and Stein Kaasa: Design and delivery of clinical trials: from idea to final publication
Chapter 8: Carlos Seiça 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
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