This is a qualitative study that aims to describe and analyze patient experiences with ALS and the people in charge of your care. Its objective is to generate scientific evidence and raise awareness among health policy-makers, professionals and society in general about the impact that ALS has on patients and their environment.
The work will be possible thanks to the “Public Social Research Competition on ALS”, organized by the Ministry of Science, Technology and Innovation and the Esteban Bullrich Foundation. Our Qualitative Health Research Unit He entered this competition with a project titled “The experience of illness in people with amyotrophic lateral sclerosis and in informal caregivers: a qualitative study,” and it was one of the ten selected by a commission of specialists from various disciplines of the Social Sciences. that CONICET designated for this task.
As with other chronic diseases, the informal care tasks required by patients with ALS are often naturalized as a family responsibility and there is little data that allows their recognition and appearance in the public debate.
We congratulate the Qualitative Research Unit for venturing into this new line of research!