Integrating families’ experiential knowledge
An essential approach to ensuring quality care
Integrating families’ lived experience into the way care and services are delivered is essential, and is a central approach within the Initiative. However, from the very beginning of MUSCO, it became clear that professionals and families are not necessarily used to working together to bring projects to fruition. And yet, whatever the subject or departments involved, these projects will ultimately impact on patients and their families. It is therefore essential to take their experience into account, with a view to continuous improvement, and to make adjustments throughout the process. This approach goes hand in hand with considering patients as full partners. It’s a win-win situation for patients and healthcare staff alike.
It is particularly important, indeed fundamental, for families whose children present significant health vulnerabilities, to respect the different experiences in order to ensure the quality of care and services offered. Caroline Marie Fidalgo, Patient Expert on the MUSCO Advisory Pole since 2021 and mother of Alex Olivier, explains:
“[…] for the same diagnosis, the reality at home, the hospital experience and the clinical picture can be extremely different. It’s important that healthcare professionals stop taking patients according to their diagnosis. They must take patients according to their diagnosis AND their own reality at home, in addition to the hospital experience and clinical picture that their diagnosis has generated. Many doctors still have the mentality of “I know X number of patients with the same disease, I know that!”, even though each patient has his or her own particularities. What works with Patient A may well not work with Patient B, even if they have an identical diagnosis. That’s what happened with my son!”
Integrating this hospital experience and clinical picture beyond the diagnosis requires collaboration. And it’s not just patients who benefit, it’s professionals too: by integrating families’ priorities into their practice, professionals can adapt the care they offer and achieve better outcomes.
How is this experiential knowledge integrated into MUSCO?
Right from the start of the Initiative, families were recruited to be :
- Patient Experts to advise on the program as a whole, with significant experience and the ability to step back from the objectives set by the Initiative;
- Patient Resources and participate in MUSCO working groups to actively contribute to the realization of the Initiative’s projects, as collaborators.
Six Patient Experts are currently active in the Advisory Pole, bringing the total number of parents involved since the Initiative’s inception to 10. Their roles include giving advice, formulating opinions, passing on recommendations on the Initiative’s various current and future projects, ensuring that projects are anchored in the field and advising on the Initiative’s orientations. In addition, two of the Patient Experts sit on the Executive Committee, which sets the Initiative’s broad guidelines and objectives.
The Patient Resources have been involved in over 40 projects to date. In particular, they have contributed to the programming of all information events for families, and to all editions of the MUSCO conference for pediatric volunteers. To complement and encourage this participation, professionals have also benefited from support in integrating families’ experiential knowledge through two awareness-raising workshops held for 50 participants.
The aim is to prevent possible misunderstandings and divergent perceptions. In Caroline Marie’s opinion:
It’s important to integrate families’ experiential experience into projects, because many people who are not in the field (managers, decision-makers, etc.) don’t know what’s really happening in the field. They often believe that everything is going well, that parents are distorting the reality experienced within their establishment, and so on. Having families and managers/decision-makers at the same table [allows] the latter to better understand our reality and, perhaps, make changes to procedures and ways of doing things. Or at least, that’s what I’d like to believe!
The various workshops held as part of the Initiative to promote the integration of patients’ experiential knowledge have led to the development of resources that are available to all on the MUSCO website: a practical guide to integrating Patient Resources into working groups, and a practical guide to evaluating projects that take the patient-family experience into account.
What about the future?
Interestingly, several of these Patient-Experts have had the opportunity to present their work within the Initiative at conferences such as the annual meetings of the Quebec Scoliosis Society, or the very first Quebec forum on polyimpairment (website in French only). In addition to sharing their experiences, those participations in MUSCO’s communications efforts has enabled them to step out of their comfort zone and speak out in a space that was not necessarily accessible to them before.
Caroline Marie is hoping that:
By mentioning our experiences (which are as complex as can be in my case, due to my son’s multi-systemic syndrome!), managers and decision-makers will be able to modify procedures and ways of doing things. The patient pathway is already difficult for simple medical cases; with a child requiring complex care, it’s often like Asterix’s madhouse. We also often have to fight for our children to get what they’re entitled to, to be heard as a parent with a child whose needs are different from what healthcare professionals are used to. I count myself lucky to have the knowledge I have in the medical field and to be able to manage the 1001 appointments, e-mails, forms, health professionals, follow-ups… I know that not everyone can do it, both emotionally and practically. If my contribution can make the patient journey, procedures and other aspects of the family’s experience a little easier, that’s something!
Integration efforts, collaboration, genuine consideration as partners, strengthening the role of patients, co-creation of guides and learning activities for professionals and patients. These are the actions that will continue to be carried out during MUSCO’s final year, to continue helping Caroline Marie and all the patients involved in the program to plant those little seeds.
And if there’s one thing the MUSCO Initiative hopes to have accomplished in this respect, it’s to have served as an effective intermediary, facilitating knowledge-sharing and ongoing collaboration between all these stakeholders, for the ultimate benefit of the families!