An introduction to research and what you need to consider 

Research generally begins with an observation which in turn prompts a question. From this the next step is to form a hypothesis or explanation which can be tested through a well-designed research study. There are many different research resources available to support research in palliative care. Below are some of the useful resources we have found to get you started.

You can learn more about palliative care research at the Research Centre for Palliative Care Death & Dying, RePaDD.

Research questions: 

Developing your research question and hypothesis are the key steps in getting started with research. This will determine the most appropriate research study type to use by helping you to decide:

  • Primary or secondary research?
  • Quantitative or qualitative research, or both?
  • Interventional or observational?
  • What is the intervention or outcome of interest?
  • What is the population of interest?

As with EBP, frameworks such as PICO or PICo can be helpful when developing a research question from your hypothesis. However, they should guide you in developing a question rather than tell you what is needed. [1]

Research challenges in palliative care

Conducting research and establishing a strong research evidence base in palliative care faces many challenges. As outlined by Aoun [2], there are strategies for dealing with some of these, but often this must be considered at the point of defining the research question.

Some of the challenges and strategies highlighted to address these are summarised here. [2] To help you explore these issues there are also links to relevant examples from the literature where the strategy or challenge has been explored.

Challenge Counter strategy Examples 
Study design - appropriateness or acceptance of randomisation, blinding, outcome measures Fast track randomisation, crossover design, "N of 1" designs, other study designs
Higginson and Booth 2011  [3]

Nikles et al 2009 [4]
Patient heterogeneity, frailty, change in preferences, and unpredictable course of illness Standardise definition of palliative care patient, collection and reporting of minimum data sets.
Currow et al 2009
Patient attrition Intention to treat (ITT) reporting.
Kochovska et al 2020 [6]
Context of care - gate keeping by health professionals or family, increased workload of health professionals
Kars et al 2016 [7]

Data management and access

Every step of the research process involves the collection, management, and analysis of data. Data may include information about participants, audio or other recordings, transcriptions of these, completed survey forms, Case Report Forms (CRFs), and so on. The quality of the results is dependent on quality of the data, and so careful attention to each step in the process is needed.

There is a growing interest in increasing availability to existing research data sets. Research Data Australia is an example of how governments are encouraging access, and reuse data for research.

  1. Sisson H. How helpful are mnemonics in the development of a research question? Nurse Res. 2017 Dec 18;25(3):42-45. doi: 10.7748/nr.2017.e1540.
  2. Aoun SM, Nekolaichuk C. Improving the evidence base in palliative care to inform practice and policy: thinking outside the box. J Pain Symptom Manage. 2014 Dec;48(6):1222-35. doi: 10.1016/j.jpainsymman.2014.01.007. Epub 2014 Apr 13.
  3. Higginson IJ, Booth S. The randomized fast-track trial in palliative care: role, utility and ethics in the evaluation of interventions in palliative care? Palliat Med. 2011 Dec;25(8):741-7. doi: 10.1177/0269216311421835.
  4. Nikles J, Mitchell G, Walters J, Hardy J, Good P, Rowett D et al. Prioritising drugs for single patient (n-of-1) trials in palliative care. Palliat Med. 2009 Oct;23(7):623-34. doi: 10.1177/0269216309106461.
  5. Currow DC, Wheeler JL, Glare PA, Kaasa S, Abernethy AP. A framework for generalizability in palliative care. J Pain Symptom Manage. 2009 Mar;37(3):373-86. doi: 10.1016/j.jpainsymman.2008.03.020.
  6. Kochovska S, Huang C, Johnson MJ, Agar MR, Fallon MT, Kaasa S et al. Intention-to-Treat Analyses for Randomized Controlled Trials in Hospice/Palliative Care: The Case for Analyses to be of People Exposed to the Intervention. J Pain Symptom Manage. 2020 Mar;59(3):637-645. doi: 10.1016/j.jpainsymman.2019.10.026.
  7. Kars MC, van Thiel GJ, van der Graaf R, Moors M, de Graeff A, van Delden JJ. A systematic review of reasons for gatekeeping in palliative care research. Palliat Med. 2016 Jun;30(6):533-48. doi: 10.1177/0269216315616759.

Page created 22 March 2022