Table 4 Opinions, concerns, and illustrative quotes regarding P&PI

The place of the patient/parent in the health system

This involvement upset assigned places, led to readjustments and reinterpretations, and highlighted resilient P&P profiles.

Physician: “Certain physicians are not ready to accept that there is a patient at the medical staff meeting, or a meeting like the ones that we have, who gets up and disagrees, who bursts in as a consultant who gives his or her opinion.”

Parent1: “I can see that parents who are often negative or react badly to certain situations are parents who are suffering. Sometimes I feel that I stand out from other people, because I am very optimistic by nature and I have a fighting spirit. This may be why I always go a little bit beyond.”

Reason for participation by Parents

They affirmed contributing their testimonial on their experience and sticking to merely conveying their feelings and day-to-day experiences.

Parent2: “I do not aim to teach anyone in a medical setting their profession — one day a physician told me that I was not going to teach him his profession. In participating, I contribute my testimonial as a parent, and that is all. More than anything else, I want to contribute my positive energy and fighting spirit.”

Parent3: “My motivation in participating in the meeting with the pediatric team is being able to give my position as a parent. So I am going to tell them my feelings regarding some of their actions. Sometimes, when I tell them my feelings, they are surprised and tell me that they had not seen things in that way.”

Reasons for Patient involvement from their perspective

Wariness: patients were waried of a medicalized world.

Consent and curiosity: to get to know a setting, to better get to know the teams that they visited as their care providers.

Engagement under tension between:

on the one hand, the desire to understand, be curious, gain autonomy and confidence, and remove obstacles, and,

on the other hand, the difficulty of pushing oneself to talk in front of others about one’s experiences with an invasive disease that one would like to keep at a distance.

Patient1: “The idea of meeting with the physicians stressed me out a bit. I wondered what I was going to do, what I should say, how it was going to go.”

Patient2: “The differences that there could be between different hospitals were quite astonishing. For example, the outcomes in FEV1% were quite impressive compared to the outcomes we had. You saw that there were distinctly better figures than what we had, indeed... So that was a bit striking to me. It was also interesting to see how other hospitals functioned and provided care, and what could be done to improve quality for patients, basically.”

Patient3: “I gave my opinion on the feasibility of things. It is all well and good to say, ‘We have to do X drainages, X treatments, X thingies, etc.,’ but in the end, there is real life which is different from hospital life.”

Projection of healthcare providers on patients in QT

The presence of a patient on the team questions healthcare providers’ professional ideas and desire.

It is tempting for healthcare providers to authorize themselves to have a particular conception of patients and parents and then to talk about them, about what they believe to be their experience, in the name of healthcare providers’ experience and in-depth knowledge of the person — his or her journey and record.

Nurse: “It would also be necessary to critique healthcare providers. Healthcare providers need to create the patient’s needs. That is what they do and they are proud of it. Nevertheless, it assumes having a patient who is completely ideal, compliant, etc. Such a patient does not exist. We do not know such a patient. We have never seen one before. These healthcare providers’ pushes always make me very afraid, because I do not lose sight of the fact that they are about the ideal of healthcare providers.”

Nurse: “Sometimes, saying that people do not know their disease suits us well in the end, because we will be able to have an effect on them, to explain and re-explain to them. These people understand very well and live with their disease on a day-to-day basis better than us. I do not think that we have the slightest idea of what they are really going through. They know very well what this disease is about, that the final outcome is death. When these patients relax their efforts, we should respect this and not necessarily go and add things.”