The Person Before the Diagnosis: A Parent Perspective on Using the “Right” Language
“When talking to families, it is important to remember that there is always a name before the diagnosis, a human who is valued and loved. In fact, for some of us, the diagnosis is merely a footnote.” (Maria, Parent partner)
In preparing to write this blog, the parent advisory members met to discuss using lay language in research. And as with many conversations involving patients and families, we came up with considerations rather than definitive answers. Read on to learn more about those considerations and how you can try to find the “right” words for your practice.
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Connecting for Care: Meet our Summer Student
We are currently wrapping up Phase 1 of Connecting for Care, and the survey will close on June 30th. This phase has involved the collection of survey data from individuals involved in child development and rehabilitation. If you are a researcher, clinician, a person who supports knowledge sharing, or a caregiver for a child with development or rehabilitation needs, and have not yet completed the survey, click on the link in the blog to participate before June 30, 2023.
Read on to meet our Summer Student Emma, and hear what she is excited to learn about.
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I don’t want to be singled out. I just want to be safe: Balancing food culture and food allergy
For children with food allergy and their families, risk exists every time a child eats. A reaction could occur due to mislabeled foods, a serving spoon that wasn’t cleaned properly, or a young child whose innate desire to explore their world through sensory play leads to accidentally eating something to which they are allergic. These are only a few examples that could lead to a food allergic reaction.
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Realigning our aspirational thinking: The right to eat in the face of risk
At a conference a number of years ago, I was sitting over dinner with some colleagues in various health disciplines, all of whom have a role in enhancing children’s eating and drinking experience. I asked the question: “Would you stop eating if someone told you that you were at risk of an aspiration event?” Without hesitation, everyone at the table said: No! That got all of us thinking about eating in the face of risk and if there were strategies that we could employ to encourage more children who are traditionally tube fed to be at the table.
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Shared Health Language Access Interpreter Services with Allana Carlyle
Lack of available language translation or interpretation can prevent people from participating in research. To design research that better reflects the diversity of the community that our research serves, it is important to tailor the recruitment approach to the needs of potential participants. This includes developing strategies to support language concordance to allow for participation in a wide variety of primary languages.
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Fruit Flies in the Diagnosis of Childhood Genetic Disorders
In today’s post, we hear from Dr. Paul Marcogliese about his important research involving fruit flies.
Read on to learn about fruit fly usage in human research, and their application to therapeutics and rehabilitation!
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Searching For a Potential Supervisor For a Summer Studentship
Whether you are a student applying for the ENRRICH Summer Studentship, or other studentship opportunities, it can be difficult to know how to reach out to potential supervisors. For today’s blog, we spoke with Dr. Jennifer Protudjer about her advice for students. Read on for all of her tips!
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ENRRICH Summer Studentship Launch
One of ENRRICH’s priorities is to support trainees to conduct research in the field of pediatric neurodevelopment and rehabilitation.
The purpose of the ENRRICH Summer Studentship is to recognize and prioritize the valuable skills and knowledge that comes from life experience. It has been developed to support principles of inclusion, diversity, equity, accessibility, and justice, and to enhance participation of groups who have been historically and systematically marginalized and excluded from studentship participation at the University of Manitoba.
Two studentships will be available per competition, and selections will be made by a two-round lottery system.
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Reflections on My Time as an Early Career Researcher with Dr. Lauren Kelly
Recently, Dr. Lauren Kelly shared some thoughts on Twitter (@PharmaLauren), reflecting on her first five years as a researcher. We reached out to see whether she’d be willing to share with our members and readers, thinking her words would resonate.
In the spirit of the New Year, we asked her a few more questions about upcoming projects and resolutions. Read on to learn more!
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Invitation to Connect for Care
Our project title is Using social network analysis to understand knowledge translation in child development and rehabilitation.
The goal of this work is to improve families’ access to safe, effective health care.
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Patient Engagement in Research
Patient Engagement is meaningful and active collaboration of families with lived experience (parents or caregivers, siblings, children and/or youth) as partners in research. There are many different levels of patient engagement and you do not have to engage in every level for every project, but the key here is meaningful and active participation. That means when patients are consulted, they have the potential to change the project.
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Creating Connections: Bringing clinicians together, research into practice, and clinicians into research
In a nutshell, The Children’s Therapy Initiative (CTI) Network is a joint program of service providers and provincial government departments. The overarching goal of the CTI Network is to provide coordinated, regionally based Audiology, Occupational Therapy (OT), Physiotherapy (PT) and Speech-Language Pathology (SLP) services to children and youth across the province.
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