Aileen Collier is a lecturer in Palliative and Supportive Services, Flinders University. Her research sits at the interface of social science and health research and is focused on human agency and safety and quality of palliative care. She also teaches in the Flinders University post-graduate program.
What advice can I offer you about nursing, research and improving health care? Nurses, as the backbone of our health services, need to be highly responsive to direct patient care needs. If improvements in palliative care are to be realised however, we also need to enact what colleagues Jane Phillips and Meera Agar have recently described as “exemplary leadership”. Our health care systems are complex, in constant flux and driven by efficiency and cost effectiveness. We need to take an active role in policy development as well as critically adapting ‘top-down’ policy and evidence-based initiatives within local settings. In this environment, nurses simply cannot afford not to be able to make sense of research findings.
The USA’s Institute of Medicine suggests the need for learning health care systems promoting the nexus between clinical practice, and research at the point of care. If we are to be effective in driving improvements in palliative care then nurses need to actively engage in this nexus. So what does this mean in practice? Just as nurses play a critical role in clinical care, we also make a critical contribution to research and are uniquely placed to do so. Closely connected with recipients of care, nurses are uniquely positioned alongside patients and families to identify medical outcomes and effects of interventions and treatments and to ‘see’ and ‘be with’ people as they endure the effects of illness, treatments and the suffering associated with them.
The important work of people like Steinhauser and Chochinov as well as my own research consistently tells us that recipients of care wish to be affirmed as unique and whole people and to be understood in the context of their values and lives. Somewhat paradoxically however, we are surrounded by an apparent societal fixation with ‘measurement for everything’. We must guard against “numerical supremacy syndrome” ensuring that our research questions address the ‘immeasurable’ as well as the measurable otherwise the legitimacy of patients’ and families’ voices about what matters most is at risk
We also know patients and families place high value on opportunities to participate in research even in the last weeks and days of life. Nurses are ideally placed to facilitate this and indeed have a responsibility to do so. We pride ourselves in being advocates for people we care for. Ironically however, we often become the gatekeepers of research closing down the very voices of those for whom we seek to advocate.
Just as no single member of the interdisciplinary team is able to address what are often complex needs of a person and their family facing life-limiting illness, no single discipline, paradigm or methodology can address all research questions. As palliative care researchers perhaps we need to move beyond our comfort zones, drawing from, collaborating with and learning from other disciplines if improvements in care are to be realised. Examples might include: the fields of anthropology; communication; human geography; implementation science; psychology; organisational and business management and health care economics to name but a few.
So how can you engage with research? Well it may be simply by keeping up to date with and adopting interventional research findings you find on CareSearch e.g. recommending a hand-held fan for someone with chronic breathlessness; or it might mean engaging with practice improvement researchers on the ground; or in the case of my own research, it could mean taking on the role of co-researcher to co-produce knowledge at the ‘frontline’. Another great example is the work of palliative care clinical trials nurses who make a major and unique contribution to the work of PaCCSC working closely at the interface of clinical care and clinical trials. It could also mean embarking on a research higher degree towards leading your own research program!
What motivates me? My own foray into research arose from a passion to see safety and quality of palliative care improve for everyone who needs it, wherever they live, whatever the diagnosis, and independent of care setting. A curiosity for complex issues and penchant for asking ‘why’ combined with grabbing opportunities and taking some risks found me committing to a PhD and is one of the best things I have ever done!
What characteristics do I think are needed as a nurse researcher? A combination of curiosity, passion, commitment, tenacity, communication skills, and a great capacity for juggling demands are key requisites plus a great sense of humour– nurses often have these in abundance. My other advice is to study a topic you are passionate about and to be proactive in networking with other researchers to inspire and support you. Go for it!
Dr Aileen Collier, Lecturer in Palliative and Supportives Services, Flinders University