Table 4.
The current feelings of participants: distribution and quotes from narratives
| Patients | |
| Uncertainty 25% | – Today I feel poised between light and shadow. I feel like someone who chases a ball without ever reaching it. I am 42 years old, and I have spent my life being told that science works miracles, and that life is long, and that progress for me will come soon. I am 42, though, not 10… My sight is progressively worsening. I feel tangible differences over a few months, days in some cases. I can remember things from a few months ago, visual details that I no longer see today. In fact, it’s not that I don’t see them: I perceive them as covered by a veil. Glossy… Like old photographs, but far less poetic… (Patient 001) |
| Discomfort, sadness 25% | – I feel sad: when mum or dad are driving, in the afternoon or in the evening, I do not see the road, I only notice a few lampposts. (Patient 007) |
| Serenity, hope 50% | – Today I feel hopeful for the future. I try every day to accept my challenges and to live with serenity. If the situation gets worse, I know that I will have to find different ways. It will be hard, maybe even unpleasant, but it will be possible. If the situation improves, thanks to gene therapy, I will be pleased. (Patient 002) |
| Caregivers | |
| Acceptance 38% | – I feel I am an integral part of my son’s life. I live in symbiosis with him. Everything is more manageable: I manage to find solutions quite easily to meet his needs during his constant difficulties. Let’s say that everything is always about having an obstacle to overcome… It’s never easy, and sometimes it’s mentally exhausting. (Caregiver 003) |
| More serenity 62% | – I know that we are doing our best to understand her condition better and, if possible, to start the therapy. The knowledge that we are doing our best brings me serenity. (Caregiver 005) |
| Retinologists | |
| Positive feelings 44% | —I’m feeling comfortable. Able to do my job without hiding my human side. Open to questions and ready to give competent and precise answers. Willing to help but aware of my limits, my role, and my possibilities. (Parallel chart 006) |
| Commitment 37% | —I feel obliged to give him what he hasn't had so far. (Parallel chart 012) |
| Motivation 19% | —I realize that it is a mutual gift. It reassures me to see her grow strong and able to face tomorrow despite her condition. I feel good with her, comforted by her positive attitude. (Parallel chart 010) |