What first made you interested in cardiovascular nursing?
I started my nursing career in the emergency department, where I was able to get a broad view of care over a wide range of patient populations. From the very beginning, it was the cardiac patients who interested me as it was clear that I could have an immediate impact on their lives. This fascination continued while I was conducting research with heart transplant patients for my master’s degree and it wasn’t long before I began to focus on congenital heart disease. At that time, 20 or so years ago, there was practically no nursing research in congenital heart disease – it was a blank page – I knew I had found my niche.
What are the key themes of your lecture?
The title of my lecture – Nurse-led research in congenital heart disease: from Cinderella to Princess – is based on a comment I heard in the early days of my research. I was presenting at a conference and a delegate said to me, “Well, yes, congenital heart disease is important, but it is really a Cinderella phenomenon.” Back then, it was rare for a nurse to have a patient with congenital heart disease on their ward and the area was seen by some as the poor relation. That delegate’s comment stayed with me over the years and it is gratifying to see this Cinderella disease now having its Princess moment – the situation has changed considerably since those early times. Congenital heart disease is now considered a mature area within cardiology and nurses are likely to have several patients with the disease on their ward, making it a central element rather than a peripheral issue. In addition, we have seen improvements in both the quality of the research conducted and the scale, with progression from small-scale studies to international collaborations.
What are the current challenges in your field?
Although congenital heart disease is the most common birth defect, the numbers of patients affected are small compared with heart failure or myocardial infarction, for example. This situation is further complicated by the diversity of heart defects involved and the different ways they are managed. The solution is collaboration – collaboration across centres, countries and continents.
Another area to address urgently is the fact that research comes mainly from, and so represents the issues in, high-income countries. This means that we have an enormous population of underserved people in the world. The challenge is to bring nursing research to disadvantaged areas, to get an understanding of what’s happening there and to work out how we can improve the situation for these individuals.
Where do you think research in your field is heading in the future?
I would like to see the princess become a queen, with even more nursing research across the wide spectrum of patients that we treat. We began by studying paediatric patients with congenital heart defects, then assessed survivors into adulthood. We are now starting to see the effects of ageing and this life-cycle perspective is something we need to better explore.
Another key area is co-designing interventions with our patients. As healthcare providers and researchers, we tend to design interventions in our offices with our teams and we do not always consult the real stakeholders about our plans. An example of where this could be particularly valuable is in the transition from paediatric to adult disease.1 It is paramount that we include patients as design partners so that we can understand what they consider to be the important components of their care.