The experience of West-African children suffering from congenital heart disease in the context of a humanitarian medicine programme in Switzerland
Under the supervision of Professor Francesco Panese, Lausanne University
The perspective of children regarding their own health as well as their hospital and medical care remains under investigated both in social sciences and in the health sciences. Even a smaller number of studies have shown interest in children mobilities for medical purposes.
My doctoral thesis is devoted to the experience of Beninese and Togolese children suffering from congenital heart disease as part of their care by a humanitarian medicine programme. This programme consists of welcoming children from so-called disadvantaged families from a dozen countries in West and North Africa, for surgical operations in University hospitals in Switzerland.
Within this programme, my interest relates to the way in which children, cared for within the framework of a transnational transfer for medical reasons, understand and live their trajectory, separated from their families as well as from their cultural, social, medical and linguistic contexts for several months. More specifically, the objectives of my research consists in questioning the way in which these children -aged from a few months to eighteen years old- (i) experience their illness, their heart operation, and their travel to Switzerland for medical reasons, (ii) communicate and cohabit with the various actors who take turns with them as part of their medical and social care, including other children, (iii) develop communication strategies and adaptive behaviours in environments which, for several reasons, are not familiar to them.
In order to best capture the experience of children as part of their biographical and medical trajectory, I followed an inductive approach and conducted an itinerant ethnography, going through the various stages and spaces provided by the humanitarian programme. I have followed eighty children in total, at different stages of their trajectory in Benin, Togo and Switzerland.