Working with our PIUO project team as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Isobel Fishman worked on a sub-study that aims to describe the characteristics of children with neurological impairment presenting with neuroirritability that require hospitalization, as well as the clinical care they receive.
Here’s what Isobel had to say about the summer student experience:
“I have thoroughly enjoyed participating in the CHILD-BRIGHT Summer Studentship Program and working on a CHILD-BRIGHT research project this summer. Before this program, I knew little to nothing about patient-oriented research (POR) and I am so grateful for all that I learned these past few months. In our very first webinar of the summer, we talked about the challenges of knowledge translation and how biomedical research unfortunately does not always translate into improved health outcomes. One way to address these gaps in the research-to-practice continuum is to recognize patient-identified research priorities and engage patients as research partners.
There are many different levels at which patients can participate in research. One lesson I learned this summer is that there may be barriers to patient engagement at any of these levels. Patient-oriented research is a growing field, and a lack of resources and limited experience with POR may make it more challenging than undertaking traditional forms of research. However, the opportunity emphasized several ways to overcome these barriers, which I look forward to utilizing in my future research endeavours.
This summer, I evaluated the clinical care received by children with severe neurological impairment (SNI) who were admitted to hospital after going to the Children’s Hospital of Eastern Ontario’s emergency department with suspected pain or neuroirritability. Pain is the most common symptom reported by caregivers of children with SNI; however, pain is difficult to identify, and therefore treat, in these children because their signals of distress are often ambiguous and hard to decode. As a summer student, I reviewed charts to better understand how their care was managed, and what investigations were done to determine a cause for the pain and irritability.
Since the PIUO project involves non-verbal children, the parents’ understanding of their child’s situation is critical to developing appropriate research questions that will inform clinical practice. To this end, the PIUO project has a Parent Advisory Group that has provided important input on the study protocol, data collection tools, and other aspects of the study.
Thank you to the CHILD-BRIGHT Network and PIUO team for teaching me the importance and application of patient-oriented research.”