Table 8 Consensus and dissensus between the P&P and the Professional groups on Patient and Parent Involvement

Consensus amongst Professionals

Activation/Recruitment:

Activation/Recruitment:

(++) The presence of a patient or parent on the quality team is “a given and an asset”

(++) Importance of the information provided to the patient or parent regarding the QI program goals

(++) Need for a good relationship between the care team and the patient/parent involved

(NC,+) The patients and parents are informed regularly (annually or more often) by the team about general subjects concerning cystic fibrosis care and research.

(NC,+) P&P must have “required qualities” to join the team

Empowerment:

(NC,+) P&P have taken a step back and drawn general lessons from their own experience

(NC,+) The patient or parent is also motivated to improve his or her own management by participating in the program.

Empowerment:

(++) P&P role on the QT has to be conveyed to the other patients or parents followed up at the centre

(++) The patient or parent is motivated to improve care for all

(++) The organization of the PHARE-M throughout France created good conditions for their membership on QTs

Contribution:

(++) The patient or parent participates in and contributes significantly to the work of the QT.

(++) Their ideas and proposals were generally taken into account

(++) The patient or parent’s regular participation at team meetings at the CFC is indispensable.

No consensus amongst Professionals

Activation/Recruitment:

Activation/Recruitment:

(+NC) Patients/parents should have developed copying skills (with the disease)

(NC,NC) The patients and parents are rather familiar with general cystic fibrosis information: research, progress made, and Registry data

Empowerment:

(+NC) Reimbursement of P&P travel fees

Empowerment:

(NC,NC) The participation of a patient or parent should be facilitated by the reimbursement of other expenses: child-care, lost working hours, etc.

(NC,NC) P&P need to be knowledgeable about the disease and its management beyond the requirements of their own care

(NC,NC) The participating patient or parent does not represent all patients

(NC,NC) It would be necessary to include several patients or parents to ensure that more different points of view are represented

(NC,NC) P&P need to understand the general functioning of the hospital

Contribution:

(NC,NC) The participation of a patient or parent on the team at French national training and information meetings is indispensable.

(NC,NC) The patient or parent participated and contributed as much as the professionals during the French national meetings

(NC,NC) The atmosphere of work at the QT meetings is better and more productive when the P&P is present.

(NC,NC) The pace of work is slower when the patient or parent is present at the QT meetings.

(NC,NC) Certain decisions made by the QT are inspired by the patient/parent.