Information and activation of the patients/parents | 1. The patients and parents are educated regularly (annually or more often) by the team about general subjects concerning cystic fibrosis care and research. |
2. The patients and parents are rather familiar with general cystic fibrosis information: research, progress made, and Registry data. | |
3. The CFC team has educated the patients and parents about the PHARE-M’s importance and aim. | |
4. A good relationship between the patient or parent recruited and the team is indispensable for the patient or parent to participate in the PHARE-M. | |
5. The patient or parent recruited is well informed of the challenges (10 commitments) of management quality. | |
6. The presence of a patient or parent on the steering team is a given and an asset. | |
7. The place of a parent or patient is not on a quality team, because he or she does not have enough training or education. | |
8. The place of a parent or patient is not on a quality team, because he or she already has too many personal problems to manage. | |
9. The patient or parent recruited possesses the qualities to become a member of the steering team. | |
10. The patient or parent recruited must have developed coping skills (see therapeutic education standard: knowing how to manage emotions and stress; solving problems, making decisions, and making choices; knowing how to communicate and being adept in relationships with others; and knowing how to put oneself in the place of others). | |
Empowerment of patients/parents to allow them participate in the QT | 1. The participation of a patient or parent depends on the systematic reimbursement of his or her travel expenses. |
2. The participation of a patient or parent should be facilitated by the reimbursement of other expenses: child-care, lost working hours, etc. | |
3. The participating patient or parent does not represent all patients. | |
4. The patient or parent was selected by the team based on a list of specific criteria (cultural level, capacity to communicate, availability, etc.). | |
5. The patient or parent is motivated to improve management for all. | |
6. The patient or parent is also motivated to improve his or her own management by participating in the program. | |
7. It is important to communicate with the other patients or parents concerning the role of the patient or parent on the steering team. | |
8. It would be necessary to include several patients or parents to ensure that more different points of view are represented. | |
9. The patient or parent must be knowledgeable about the disease and its management beyond the requirements of his or her own care. | |
10. The patient or parent must be knowledgeable about the general functioning of the hospital. | |
11. The patient or parent must know how to communicate with the professionals by taking a step back and drawing general lessons from his or her own experience. | |
Capacity for effective contribution of the patients/parent | 1. The PHARE-M national organization created good conditions for incorporation of the patient or parent. |
2. The participation of a patient or parent on the team at French national training and information meetings (four French national face-to-face “EPE” meetings) is indispensable. | |
3. The patient or parent participated and contributed as much as the professionals during the French national “EPE” meetings. | |
4. The patient or parent’s regular participation at quality team meetings at the CFC is indispensable. | |
5. The patient or parent participates in and contributes significantly to the work of the steering team. | |
6. The patient or parent’s ideas and proposals are generally taken into account by the steering team. | |
7. The atmosphere of work of the steering team meeting is better and more productive when the patient or parent is present. | |
8. The pace of work is slower when the patient or parent is present at the steering team meeting. | |
9. Certain decisions made by the steering team are inspired by the patient/parent. | |
10. The process of incorporation and participation of the patient or parent should be reviewed and improved for the continuation of the PHARE-M. |