Table 3.

Perspectives from PWS caregivers on the therapeutic path: quotes from narratives

Professionals	Thanks to our specialist, we got an appointment at the hospital, where we currently get care. They deal with many cases, and for us, this is a guarantee. On a human level, they are unparalleled, available, smiling; this lets us be more at peace, without feeling our burden. (Caregiver 038) I started meeting health workers, support teachers and incapable teachers, unprepared paediatricians, arrogant doctors, medical commissions, and courts. I clashed with bureaucracy, absurd health protocols and illogical rules to get what my daughter was entitled to and to support her psycho-physical well-being. (Caregiver 031) I was disappointed by the professionals. They talked about my son and my life as something that could not be changed, fatal, hopeless. I decided to get as far away as possible. My son was not a syndrome, he was a child. (Caregiver 011)
Healthcare structures	We do not live in a big city, so we had great difficulty getting our daughter adequately seen to. (Caregiver 018) At the hospital, they presented us with the path we should have taken… on a medical level! For a therapeutic level, I had to resort to private professionals and centres. (Caregiver 024) Miles of roads and hotel rooms characterise the therapeutic path that families must pass, both in economic terms and in terms of stress. (Caregiver 066)
Treatments	This part was better than expected. The only medicine we use is GH, which is simple and painless. (Caregiver 008) Psychomotricity, GH, speech and music therapy, psychological support and sports. (Caregiver 010) During his adolescence, we had to resort to psychiatric drugs: this felt like a defeat, but it was necessary. Our son had become unmanageable. Psychiatrists have little knowledge of the syndrome. (Caregiver 027)

GH, growth hormone; PWS, Prader-Willi syndrome.