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Three challenges of research in palliative care: recruiting participants, the use of language, and understanding risks and benefits of palliative care. programs of study

Carole Robinson, from the University of British Columbia (Canada), spoke at a course organized by the ATLANTES Program of the ICS and the School of Medicine.

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PHOTO: Carlota Cortés
27/02/15 14:38 Carlota Cortes

The three main challenges of qualitative research in palliative care are recruiting participants, the appropriate use of language, and understanding the risks and benefits of programs of study. This was stated at the University of Navarra by Carole Robinson, Associate Professor of Nursing at the University of British Columbia (Canada).

The expert joined the team of the ATLANTES Program in February as a visiting researcher. ATLANTES Program Program team at Institute for Culture and Society (ICS). She was also one of the speakers in the course 'Data collection within qualitative research methodologies', organized by the project together with the Unit of Education Medical of the School of Medicine.

With regard to patient participation in research, Carole Robinson pointed out the main difficulty in encouraging it: "When they are faced with their own mortality and the sense that their time is limited, their willingness to participate in a study is negatively influenced". agreement Nevertheless, the professor stressed the importance of involving patients, since, according to her experience, when they participate in programs of study, "these are a success". 

Improve the patient's quality of life

The second challenge listed by the researcher is to use appropriate language and how the use of certain words may or may not benefit the study. For example, according to the professor, in Anglo-Saxon countries the concept of 'palliative' is often identified with the end of life. In contrast, she pointed out that "'palliative' does not mean the end of life; palliative care begins when the disease starts to affect the person's quality of life".

Finally, he noted that understanding the risks and benefits of conducting such research with patients is important when designing qualitative research. "Historically," he noted, "it has been thought that having the sick person talk about their experience causes them pain; we understand that it may evoke that distress, but we don't think it causes it.

In that sense, he stressed that the patients themselves recognize that it is positive for them: "They tell us that they find it very useful to have someone listen to them attentively and take an interest in their experience".

Together with Carole Robinson, the course was given by María Arantzamendi, professor at School of Nursing and ATLANTES researcher; Olga López, professor at School of Nursing; and sociologist José Miguel Carrasco, researcher of ATLANTES.

The program will present the importance of qualitative research for the Education, the research and the management clinic, and will discuss the basics of its main methodologies: ethnography, phenomenology, narrative and grounded theory at data.