Investing time and patience into her PhD research, Joanne uncovered the true impact of a condition that had to that point been very little acknowledged and even less understood. Revealing the impact of cachexia on family dynamics in the crucial final weeks of a patient’s life, helped Joanne start on a career-long journey to use objective science as well as subjective nursing care, to improve the care of thousands of people. Years of committed research and integration of that research into guidelines have ensured those early discoveries have been capitalised on.
“I think nursing will continue to provide excellence, as it is doing on a daily basis. We will continue to go from strength to strength, and be ready and able to not only meet needs but to lead modifications that are necessary to address the changing health and social care needs of our population.”
For as long as she can remember, in her time as a nurse, Joanne was always fascinated by the symptoms for which there may not be an obvious treatment. Treating people, and importantly the people around them, holistically is what Joanne has been committed to doing throughout her career from a staff nurse, right through to her current position of influence as professor at Queen’s University Belfast and board member of various palliative care organisations.
Joanne has helped many people in advanced stages of cancer with a wasting syndrome called cachexia by listening to them, understanding the emotional stresses and strains it can cause and her research informing international guidelines for fellow professionals to follow in managing it. It’s quite possible that none of this would have happened had Joanne not been under the mentorship of particular senior nurses when she did her first placement at the regional oncology centre in Northern Ireland.
“One reason for staying in palliative care was the great mentorship I got both on the ward and from our nurse leaders. They were really quite visionary, enthusiastic and supportive and they encouraged me to go on and do a masters and PhD.”
That PhD set out to explore the real impact of cachexia on patients and their families and surprised even Joanne in terms of the in-depth findings. It revealed a huge desire amongst this patient group and their families for an acknowledgement of the problem and for a set of strategies to realign care.
“I thought I was going to learn about death as all participants had an advanced cancer diagnosis but, instead, I learned about living and life! I learned about living with cachexia and the impact it can have on living and family dynamics, as well as the connotations attached to food and feeding in relation to cachexia.”
Years on, and now Joanne has helped develop and collaborate on cachexia research programmes globally as well as inform international guidelines for identification, treatment and management of cachexia, thereby improving the life of patients and their families.
Joanne’s passion for nursing research is illustrated by her active presence on the board of the International Network for Doctoral Education in Nursing, bringing together doctoral nursing students from across the globe. In addition, Joanne is the chair of the Palliative Care Research Network for the All Ireland Institute for Palliative and End of Life Care.
What drives you to make a difference?
When she was doing her PhD, Joanne developed a mantra: “Never mistake a clear view for a short distance.”
In practice this has taught her that, particularly when researching something as sensitive and challenging as cachexia, you have to take your time.
“You have to peel back layers to understand the nuances of anything to do with health and wellbeing, and we too often underestimate the time needed to work out the right question and form the right relationships to enable a rapport and to get to the nub of the matter.”
It’s the holistic element to palliative care that continues to drive Joanne to make a difference every day.
“In care generally, moving forwards, we have to think about more than just a patient with a symptom. It is more complex than that, and we also have to consider the people supporting that patient and the effect it’s having on them.”
Knowing that her pioneering work is now having a real impact on the care for people with cachexia is another real motivator for Joanne.
“I feel what’s making a difference is your work being included in guidelines and those guidelines being endorsed by the likes of the American Society of Clinical Oncology, because that leads to a real improvement in clinical practice.”
How do we see the art and science of nursing expressed?
For Joanne, the art of nursing is as important as the science. She is determined that student nurses don’t forget that because of the hugely positive effect traditional nursing care can have on a patient and their family.
“We see subjectivity played out every day at the coalface with patients and you see what an altered family dynamic can look like and what the impact of that can be. It’s hard to measure that in an objective fashion. As nurses, we have to sit across both of those realms where we need objective science but also the subjective nature of delivering nursing care.”
I have led the development of an interdisciplinary, international working group in relation to renal cachexia. Unlike in cancer, there is no disease specific definition for cachexia in renal disease. It is a challenging area, but we have taken on those challenges, found solutions and overcome them. We have just completed a first study focusing on the clinical phenotype of renal cachexia to advance science in this area.
The Palliative Care Research Network at the All-Ireland Institute for Hospice and Palliative Care, for which Joanne is chair, provides mentorship and support and connects researchers and clinicians so as to empower them in their research to improve the quality of life for all people receiving end of life care in Ireland.
How can nurses strengthen their leadership and impact?
“I think nursing will continue to provide excellence as it is doing on a daily basis. We will continue to go from strength to strength, and be ready and able to not only meet needs but to lead modifications that are necessary to address the changing health and social care needs of our population.
We have an awareness of those changing needs as we work so much at the coalface. I would like to continue to empower nursing to lead those initiatives that are needed. If you look at the role of nurses, we are continually adding to it. There’s a commitment to up-skilling, to health and wellbeing and the provision of expert care, and it’s so encouraging to see that level of commitment.
Nursing is the profession that is not only the most demanding but also the most sensitive; that is a marker of nursing. For me nurses have a very dynamic role in transforming health services around the world: it is the most vital profession globally.”
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