The three main challenges of qualitative research in palliative care are recruiting participants, using appropriate language and understanding the risks and benefits of studies. Or so Carole Robinson, Associate Professor of Nursing at the University of British Columbia (Canada), suggested at the University of Navarra.

In February, Professor Robinson incorporated as a visiting research fellow into the ATLANTES project at the Institute for Culture and Society (ICS). She was also one of the speakers at the Data collection within qualitative research methodologies course, which was organized by the project, along with the Faculty of Medicine's Medical Education Unit.

With regard to patient involvement in research, Carole Robinson pointed out the main difficulty in promoting it: "When patients are face to face with their own mortality and the sense that their time is limited, their availability for participating in studies is negatively perceived. " However, the professor stressed the importance of involving patients since, according to her experience, when they participate in studies, "they are a success."

Improving patient quality of life

The second challenge that the researcher highlights is using appropriate language and how using certain words can help or harm a study. For example, according to the professor, in Anglo-Saxon countries, the "palliative" concept is usually associated with the end of life. Against this, she recalled that "palliative" does not mean the end of life; palliative care begins when a disease begins to affect the patient's quality of life."

Finally, she noted that understanding the risks and benefits of conducting these investigations with patients is important when designing qualitative research. "Historically," she remarked, "people have thought that making a patient talk about his experience would cause him pain; we understand that it can evoke such distress, but we do not believe that it is the cause."

In this regard, she stressed that patients themselves recognize that it is good for them: "They tell us that they find it very helpful to have someone listen to them attentively and show interest in their experience."

Along with Carole Robinson, the course was given by Mary Arantzamendi, Professor in the School of Nursing and ATLANTES researcher; Olga López, Professor in the School of Nursing; and sociologist José Miguel Carrasco, ATLANTES researcher.

The program presented the importance of qualitative research for education, research and clinical management; it discussed the basics of the main methodologies: ethnography, phenomenology, narrative and data grounded theory.