{"id":4038,"date":"2024-09-19T11:09:55","date_gmt":"2024-09-19T15:09:55","guid":{"rendered":"https:\/\/musco.ca\/?p=4038"},"modified":"2024-09-27T14:40:54","modified_gmt":"2024-09-27T18:40:54","slug":"newsletter-september-2024-experiential-knowledge","status":"publish","type":"post","link":"https:\/\/musco.ca\/en\/newsletter-september-2024-experiential-knowledge\/","title":{"rendered":"Newsletter September 2024"},"content":{"rendered":"
\n Content with Musco background<\/span>\n \n \n \n\n

Integrating families’ experiential knowledge <\/strong><\/h2>\n\n\n\n

An essential approach to ensuring quality care<\/p>\n\n\n

\n
\"\"<\/figure><\/div>\n\n<\/div>\n\n \n\n\n\n
\"\"<\/figure>
\n

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.<\/p>\n<\/div><\/div>\n\n\n\n

\"\"<\/figure>
\n

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<\/a> since 2021 and mother of Alex Olivier, explains: <\/p>\n\n\n\n

“[\u2026] 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 \u201cI know X number of patients with the same disease, I know that!\u201d, 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!”<\/p>\n<\/div><\/div>\n\n\n\n

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.<\/p>\n\n\n\n

How is this experiential knowledge integrated into MUSCO?<\/mark><\/strong><\/p>\n\n\n\n

Right from the start of the Initiative, families were recruited to be :<\/p>\n\n\n\n