Abstract
Research in palliative care is challenging and complex and it uses a range of research designs and research methods, derived from many different scientific disciplines: from medicine and nursing over health sciences, communication sciences, ethics, psychology, sociology, epidemiology, and anthropology. 1 Becoming a good researcher in palliative care entails a proper understanding of two important points related to an adequate developing of research.
First, a researcher needs to have good basic skills and knowledge in research methodology to fully understand the complexity of choices to be made during the research process. You do not have to know all research methods yourself—that would be almost impossible—but you need to have access to collaboration with good methodologists who can assist in guiding you as a researcher to the right design and right methods. Therefore, it is advisable to have interdisciplinary collaborations in designing and conducting palliative care research. Hence, this implies that a researcher in palliative care has to create a research team for conducting a study, rather than individuals conducting palliative care studies on their own. Good palliative care research requires often a multidisciplinary collaboration with interdisciplinary decision making during most steps in the study, from protocol writing to study reporting.
Second, a researcher needs to understand the process to choose an appropriate “research design” to answer the complex questions posed in palliative care. This is not a simple question and the best way to handle this is to collaborate with experienced researchers. An informed choice between the many research designs is not easy, how do I choose between a trial, a survey, an unstructured observational design, a structured observational design, a case study design, a consensus design, an action research design, and a document research design. Once that has been chosen, the researcher has the additional challenge of making choices between many different methods or techniques for patients of population sampling, data collection (unstructured interview, structured interview, questionnaire, and focus group), preparation of quantitative or qualitative data for coding and analysis, and different types of reporting.
The first textbook specifically on research methods in palliative care was published in 2007. 2 Giving the wide range of existing very good research methods textbooks available, one could question the need for a textbook specifically focusing on palliative care. The editors of the textbook on research methods in palliative care thought that palliative care presents particular challenges to researchers, both because of the ethical and practical difficulties which result from 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. 3 New researchers, and experienced researchers working in palliative care for the first time should benefit from knowledge about the range of research methods available to address the physical, psychological, social and spiritual problems, and challenges of patients and families, caregivers, and professional in palliative care. Reviewing this textbook of 2007, I noticed that it covered a very limited number of research designs and research methods that were used in palliative care studies in those days. Most attention was given to systematic reviews, surveys, experimental and quasi-experimental designs, and some qualitative study designs. For sure in those days these methods covered about 90% of the ongoing palliative care research, but today the number of designs to choose from have been dramatically increased in palliative care research.
A characteristic of this textbook is that there was little attention for the knowledge and skills needed to choose a design, as separated from choosing a method. This is in my view a fundamental skill for any researcher in palliative care. A research design is the overall strategy or plan that a researcher outlines to address their research questions or hypotheses. It serves as a blueprint for conducting the study, guiding the researcher in collecting, analyzing, and interpreting data. A well-designed research study aims to minimize bias and error, ensuring that the results are valid and reliable. Hence the choice for the design is more important than the choice for a method. The impact that your study could have on practice or policy will be strongly impacted by the choice of your design. A research method is far more concrete and, in my experience, easier to select. A research method is a systematic procedure or technique used by researchers to collect, analyze, and interpret data to answer research questions or test hypotheses. Research designs and research methods vary depending on the discipline, the nature of the research question, and the type of data being collected.
Ever since the publication of the first textbook specifically on research methods in palliative care, all presented research methods are still being applied in contemporary research in palliative care. However, in the last 20 years many more designs and methods have seen the light of day as new methods or as existing methods from other professional fields that found their application in palliative care research for the first time. When we look at the chapter on reviews, this was only focused on “systematic” review. A simple search on PubMed of the last 2 years generates next to systematic reviews multiple additional different types of review designs: a systematic review and meta-analysis, a systematic review with qualitative synthesis, a rapid review, an integrative systematic review, an integrative review, a scoping review, a narrative review, an umbrella review, a systematic umbrella review, a meta-ethnographic review, and I might have missed some review designs. When I started doing research in palliative care, we were educated only about one type of review, namely a systematic review. Hence, the world of research in palliative care became far more complex and challenging. Today, Palliative Medicine is publishing all of these types of reviews, but it is still a challenge in the review process to get more clarity on the review design.
Palliative care is characterized by heterogeneous patient and caregiver populations who are provided care in different health care systems. When these populations are inadequately described, it challenges the application of new knowledge. Collectively, this limits the uptake of new research knowledge into practice and the ability to conduct meaningful confirmatory studies in palliative care. 4 Therefore and rightly so, the paper in Palliative Medicine by Kochovska et al. 4 proposes an approach to create more comparable cohorts in observational palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built (“anchoring”). In addition to providing a detailed and complete description of the study population, anchoring is the critical step in creating more comparable cohorts in observational palliative care studies. This kind of paper is an example of “basic research” that is too often missing in in palliative care research and more of these kinds of studies are needed for the further development of our research domain.
Inappropriate use of a method is another problem in palliative care research that could jeopardize reproducibility and validity of newly produced knowledge. The study of Braun and Clarke 5 on the use of reflexive thematic analysis in qualitative studies reported in Palliative Medicine demonstrates this clearly. Reflexive thematic analysis is widely used in qualitative palliative care research. However, it is often not used well according to Braun and Clarke 5 and they have identified common problems in published thematic analysis research, including: assuming thematic analysis is one approach, rather than a family of methods; confusing themes and topics; treating and reporting reflexive thematic analysis as if it is simply a method, without theoretical foundations that underpin and substantiate the analytic procedures. 5
Hence, the need for good research methods education and training for researchers entering palliative care research is for sure much higher than when I was entering research in palliative care back in the nineties. The exponential growth of new design and new methods in palliative care need to be supported and guided more professionally. Journals and conferences need to build in far more slots for education on research methods and palliative care associations have to develop research educational programs and training. Institutionally, we need to develop more collaboration with those disciplines that are far more familiar with some of the research methods that we apply in palliative care studies. It will increase definitely the quality of our research in palliative care, it will increase the quality of the description of our methods in our papers, and, last but not least, it will also increase the reproducible knowledge, and the generalizability and effective translation into the palliative care practice.
