The MUSCO genetic counselor, a permanent role
and a permanent bridge between the CHU Sainte-Justine and the Shriners Hospital for Children – Canada
Recruited as part of the MUSCO DNA Sequencing project at the Shriners Hospital for Children – Canada, which supports a cutting-edge program to identify mutations associated with inherited musculoskeletal disorders, Valancy Miranda divides her time between the Shriners Hospital and the CHU Sainte-Justine.
The major benefit she sees in bridging these two institutions is that she can prepare more thoroughly for patients with cases at both institutions, whether it be to better answer their questions or refer them to the right professionals, or to facilitate the exchange of information between teams following the same patient.
Valancy can connect with children and families in several ways: it facilitates patients’ and families’ understanding of the genetic aspects of their condition, provides support and acts as a point of contact to answer questions or concerns, whether it is about starting a family in a context where one of the two parents has a genetic condition, understanding tests or the likelihood of passing on a genetic condition. She also helps identify patients who are eligible for certain research projects, offers them to participate, explains the research projects to them and helps obtain consent.
It is clear that contact with families and staff is easy for Valancy: “In my discussions with individuals and families, I try to establish a climate of trust that allows for two-way communication, where they feel comfortable asking their questions and sharing their concerns,” she explains. “I try to take as much time as possible to help them understand the genetic aspects of their condition so that they feel well-informed, as this is information that can often be quite complex. I also try to provide support to families and act as a point of contact or resource person for families.”
The impact of Valancy’s work on both patients and professionals is very positive, as evidenced by the results of a survey of professionals conducted in November 2021: 100% of respondents described its response to requests as “Excellent”, its adaptation to reality and context, the quality of exchanges and follow-ups, and its ability to listen, empathize and be discreet. 75% of respondents described its management of problems and its ability to anticipate as “Excellent”.
We wish Valancy all the best for the future, as her duties will be officially transferred between the two institutions as of June 2023.