Understanding research

What is the aim of research? 

The aim of research is to generate new knowledge. The National Health and Medical Research Council (NHMRC) is a major funder of research in Australia and offers the following on research: The concept of research is broad and includes the creation of new knowledge and/or the use of existing knowledge in a new and creative way to generate new concepts, methodologies, inventions, and understandings. This could include synthesis and analysis of previous research to the extent that it is new and creative. [1]

Palliative care research 

Conducting research in palliative care is complex. This partly reflects the diversity of populations and contexts of care. In research terms van der Steen [2] note that palliative care research includes a focus on a very diverse range of issues including:

• patient values, wishes and goals of care
• managing biopsychosocial symptoms
• managing spiritual needs
• improving quality of life
• communication
• decision-making
• professional collaboration and teamwork.

The volume of research in palliative care is rapidly increasing but quality remains an obstacle to generating evidence. [2] There are many challenges that are unique to or significant in palliative care as a research setting:

• The difficulty with recruiting and retaining study participants whose health is declining and who are approaching death
• The need to include perspectives that reflect the multidisciplinary nature of palliative care provision
• Problems with building collaborative research teams and conducting research across the range of settings in which palliative care is provided
• Challenges related to identifying and contacting family members and caregivers who have been consumers of palliative care
• The difficulty of how best to measure effectiveness and cost-effectiveness of treatments and services in the midst of inevitable deterioration in a dying patient
• The challenges of engaging clinicians in a sector where there has not traditionally been a research culture. This includes building infrastructure, and building expertise in the range of different methodologies appropriate to different research questions in palliative care
• The predominance of investigator-led over pharmaceutical company-led research in palliative care limits financing opportunities for researchers.

In an extensive review of research in palliative care, Bouca-Machado 2017 note – ‘the first step in generating not just valid, but also generalisable knowledge, is to clearly define palliative care populations, types of intervention and time to referral, establishing a common lexicon for clinicians and researchers’. [3] Almost a decade earlier, Currow [4] proposed a framework comprising five domains to standardise description of palliative care populations, providers, services, and policy and research contexts. This might improve generalisability across both quantitative and qualitative research.