When your kid can’t breathe, nothing else matters.
Being the parent of a child diagnosed with asthma is like going on a journey with little idea where you are headed. Asthma is a disease that changes across the course of a day, a year, and a lifetime. Your child’s symptoms may get better in the summer, but flare up when it’s time to go back to school. Symptoms often get less severe in boys as they enter puberty, but worsen in girls and young women.
It’s a lot of stress for a parent to handle. However, I’m currently involved in research that examines a parent-focused intervention designed to improve parents’ ability to manage their own stress levels, and to see if that improves their children’s health outcomes.
We believe our project is the first to focus on the parents and caregivers of children with asthma. Research has repeatedly shown that a parent’s stress levels correlate quite directly to a child’s health. It makes sense when you think about it; children absorb an awful lot, and often their health reflects their parents’ health. It can be a vicious cycle.
Asthma can be especially challenging when a family is economically disadvantaged. A parent may be worried about keeping a job, especially if they have to regularly stay home with a sick kid. There are often concerns about crime and violence in the neighborhood. So, we’re focusing our research on parents who have to juggle a lot.
Our project compares health outcomes of two treatment plans for socioeconomically disadvantaged children with asthma. Both groups receive usual asthma care, but the parents in one set also receive stress management techniques to determine if helping parents cope with stress can improve their kids’ health. The stress management includes relatively simple things like mindfulness, breathing exercises, positive thinking, and simple yoga positioning.
When a child has asthma, things can be complicated. It’s easy to give a kid medicine for a fever, but it’s really hard to give a kid a puff off an inhaler while properly using a spacer. Learning how to do it right is an involved and stressful process. Families also need to manage things like making sure their kid’s room is clean, the sheets are regularly washed, and that the child isn’t bringing food into his or her room that can attract bugs or rodents that can aggravate asthma.
What’s been unique about this project is that as our funding was through the Patient-Centered Outcomes Research Institute (PCORI), we were required to engage with patients, parents, and other groups in all stages of the project. PCORI supports research that is guided by patients, caregivers, and the broader healthcare community with the goal of focusing on outcomes that are important to patients. The stakeholder engagement process was really remarkable, and it’s changed me as an investigator forever—because I realize the value of getting input from these groups.
During the process to develop our intervention, we actually changed our primary outcome by talking to moms and dads. We initially were going to study adherence to medication, but when we talked to the families, they said we don’t really care so much about that, we care if our kids are breathing. It was like a lightbulb went on. The outcome we should be measuring is symptom-free days. Do they sleep through the night, can they run and play, and do they need their rescue inhaler.
Through this patient-centered approach to our study, encouraged by PCORI, we learned that patients and caregivers have a lot to offer to the process of study design and implementation. Parents, especially stressed parents, appreciate being heard and having the opportunity to interact. The parents felt supported, and the intervention we developed was better received because parents were part of the process. We’re in the final stages of our project and look forward to sharing our results with a wider audience.
Photo by Cristian Palmer on Unsplash
