Pediatric Studies: A Mom’s Perspective

Home health nursing for pediatric clinical trials | UBC

Pediatric Studies: A Mom’s Perspective

As a nurse involved with clinical research and a parent, I especially appreciated a recent opportunity to chat with a parent whose child is enrolled in a Phase 2 clinical trial. I wanted to put myself in the shoes of the child’s mother. As a parent, what kind of issues did she grapple with before enrolling her child in the study? And what factors make a difference for her child’s continued participation in the trial? Here are some of the questions I asked to get her perspective.

Q:  Both you and your child are diagnosed with this inherited metabolic disease. Why was it important to you to enroll your child in this study?
A: 
I was not able to become a nurse because of my disabilities, which was my lifelong dream. I don’t want this for my child, so when my doctor alerted me to this study, it meant a possible new treatment that might keep my child out of a wheelchair or at least delay it.

Q: What did you see as the challenges to your child’s participation in the trial?
A:
The study requirements were quite rigorous. Each child is followed for more than a year from the time of enrollment. During that time, there are 36 required visits to the investigator’s office. To add this study schedule to my child’s regular healthcare and school obligations, not to mention my own responsibilities, well, that was daunting. 

Q:  What motivated you to enroll your child in this study?
A: 
First and foremost, I was reassured by the conversation I had with my child’s doctor. My child would never have had the option of being treated now with the drug being studied, and my child receives increased care and attention as a participant in the study. 

But I also learned that a nurse could visit our home to not only administer the study drug injections every couple of weeks but also draw the labs, which have to be done at least 5 times during the study. This meant I didn’t have to drive back and forth to the doctor’s office, a two-hour drive each way from our home. My child has not missed a day of school in 54 weeks of study participation. Having that normalcy in my child’s life — that’s important to me. 

Q: As a parent myself, I know the relationship I have with my child’s doctor is an important one. How does the home nurse fit in with the study team? 
A:
For this trial, the nurse serves as an extension of the study team. She’s been to my home 12 times now. She knows exactly what to do — which veins to select and how to comfort my child — repeating “breathe” and “relax” during venipuncture. Her care has been exceptional, but she has also shown real compassion. She takes an interest in my child, asking about school and our pet dog and pet rabbit! Our study nurse is like family now.

I became a nurse because I truly wanted to help people, a common driver for many of us in this profession. Working in clinical trials I have the opportunity to provide care to study participants — parents and children alike — who are helping to advance treatment for life-threatening or life-altering diseases. By conducting this study visit in the home with the home-health nurse, I saw first-hand how valuable this option is by making things a little easier and less disruptive for study participants. As a bonus, I am re-energized and even more passionate about what UBC’s home health nursing team does every day!

Learn more about how home health nurses can make trial participation easier for research sites and patients alike and encourage compliance with study visits.