The path of a child living with cerebral palsy (CP) is filled with emotions, obstacles, and decisions. Gillette Children’s researched what influences parental decision-making to offer enhanced support to parents.
The Complexity of Decision-Making with a Young Child with Cerebral Palsy: Understanding Mothers’ Lived Experiences Using a Phenomenological Approach was shared at the American Academy for Cerebral Palsy and Development Medicine (AACPDDM) and was awarded the conference “Top 10” out of 120 papers submitted.
The study was conducted with 18 mothers by Gillette experts Meghan Munger, PhD, MPH, Rhonda Cady, PhD, RN, and Tom Novacheck, MD, as well as their colleagues outside of Gillette, Timothy Beebe, PhD, Nathan Shippee, PhD, and Beth Virnig, PhD, MPH.
The team identified five themes influencing how and why families make health-related decisions for a child with cerebral palsy. Complex and dynamic experiences influence goals, priorities, and how to seek health services.
1. Evolving Expectations
Expectations regarding their child’s diagnosis, prognosis, and abilities evolve. Frequently, caregivers find themselves adjusting and reshaping goals and priorities. This change may differ for each caregiver, even within the same household.
"We knew from the start there was going to be an issue...I have friends who didn’t find out until 2 [years of age]. They didn’t know there was an issue and their child’s going to be complex. And they spent kind of the whole next year reeling from that...that wasn’t my experience. I knew from 22 weeks and had two years to process that [before he was diagnosed].”
– Patient Mother
“I’m not trying to fix her or cure her...I’m the only one, of the people that helps me with her the most, my grandmother and her dad; I’m the only one that is OK with where she’s at and where she might be in the future. They’re still at the ‘gotta fix the problem’ stage."
– Patient Mother
2. Quality of Life for the Child
Decision-making includes a balance of social and emotional well-being, and sometimes comes at the expense of a known benefit. In addition, as a child gains agency, their voice becomes more vital and influences the expectations.
"I tend to be more what do my kids like and want versus where do we get the most progress, where are we going to get those academic achievements, what’s going to get her on the fastest pace to be able to kick a ball, like all of that kind of stuff. I feel like I want to do all of that, but I want her just to be a kid who just gets to play at the pool with her siblings—I just want her to be a kid with her siblings and not be the kid with disabilities, and so I have tried to manage and balance that.”
– Patient Mother
3. Family Well-being
What might be considered best for the child might not be suitable for the family. Caring for a child with CP often becomes a balancing act in context with the family’s well-being. Financial considerations, marriage dynamics, and overall family well-being are interwoven into decision-making.
"It’s been overwhelming at times, thinking about another appointment. We have a bit of a balancing game—is it worth the drive and all the investment for some appointments? Sometimes we’ve been like, not right now, we’re good. Part of it is what’s going on with our family...We have to weigh that. Sometimes, we have to say that appointment is not as important as we think. It might be important for her, but then for everyone else, it’s actually detrimental.”
– Patient Mother
4. Uncertainty
Parents must weigh multiple known and unknown factors for each decision while not knowing what the future holds.
"You don’t want to put your child through surgery...It’s all those ‘what ifs’, and she already fought her little heart out to be alive. What if I make their decision, as a parent, to put her through this? But what if we didn’t? What if we didn’t?”
– Patient Mother"Each of these specialists is watching one specific area, but who is looking at her globally? That isn’t me, right? Because I don’t know what I’m doing...I really wish that there was somebody who could just help us manage it all… at that global level…We can’t be proactive because we don’t know until it becomes a problem…Then again it becomes this thing like, well I’m just trying to survive, every day, so I don’t have time to be looking into other stuff all the time.”
– Patient Mother
5. Overburden
It includes countless administrative tasks like scheduling appointments, navigating state services, or insurance approvals. This is further complicated by inconsistent guidance from professionals.
"We were told as we left the NICU that we are eligible for county insurance. As a well-educated English speaker with consistent access to a phone and computer, I found that process so frustrating. I started it four different times and gave up. I didn’t get her signed up until she got the actual CP diagnosis and then it was even a year and a half later because it was such a mess.”
– Patient Mother"Insurance is definitely a headache. I’m already struggling with a lot and then having to answer...I know it’s kind of going to sound crazy, but for something to get approved you have to explain the very worst scenario for your child for them to be able to approve something that your child needs. Otherwise, the first thing they will say is no.”
– Patient Mother
