Katharina Lex – researching palliative care for people with Parkinson’s disease

“I do not give up easily – that is a useful quality to have in academic research, as the path can be rocky and strewn with setbacks,” says PhD student and nurse researcher Katharina Lex from the Institute of Nursing Science and Practice at the Paracelsus Medical University in Salzburg, Austria.

Since 2016, the Institute has been a WHO Collaborating Centre for Nursing Research and Education, working towards strengthening palliative care education and training with a focus on nurse-led palliative care services.

“What has always drawn me to the field of palliative care is knowing that small interventions can alleviate suffering towards the end of a person’s life, both for the person and for their loved ones. This is what led me to work in nursing homes after completing my 3-year vocational training,” Katharina explains.

“I soon realized, however, that I wanted my contribution to be broader and far-reaching, and therefore decided to further my education and pursue first a bachelor’s degree and then a Master of Science degree in nursing.”

Holistic care that meets the needs of patients, their relatives and caregivers

“Both my bachelor’s and master’s final theses were on palliative care. I am now fulfilling my dream of doing a PhD and am researching palliative care for people with Parkinson’s disease, a chronic and neurodegenerative disorder that in its advanced stages presents severe symptoms that are challenging for both patients and caregivers.

“High-quality palliative care demands a multidisciplinary approach, which is how the research team I am part of is structured as well. As a nurse, I am trained in recognizing the risks of depersonalized, sometimes overmedicalized care of patients with chronic illnesses. I also promote a holistic person-centred care approach, knowing the value of person-centred interventions that place emphasis on listening to and knowing patients, creating a calm and serene atmosphere, and making sure patients feel cared for.

“The research projects I am involved in examine the accessibility, use, costs, quality, organization and outcomes of health-care services, as well as the patients’, relatives’ and caregivers’ needs. I still have direct contact with patients when we perform research interviews, which is an important source of motivation for me.

“There is one particular research project that left quite an impression on me. I interviewed patients with neurological disorders in a nursing home for elderly people and many of the residents had grave symptoms. Yet, despite the burdens they experienced, the patients still found quality in life, one of the reasons being that they felt well taken care of by the nurses there.”

Teaching and mentoring

“It would be my wish for more professionals to research palliative care for patients with neurological disorders. Often, the focus is on oncology patients, I suspect because the condition trajectories of patients with neurological disorders are more complicated to predict and those affected are mostly elderly.

“I dedicate half of my time to researching and the other half to teaching and mentoring students in palliative care studies. When teaching qualified nurse colleagues and students who enrol in the University’s bachelor’s and master’s degrees in nursing, I place particular emphasis on how minor adjustments to caregiving practices can significantly improve a person’s experience.

“I find the academic tutoring aspect of my work deeply rewarding, as students are passionate about the field of palliative care. I like to think that I am contributing to improving perceptions and practices both with my research and my teaching.”