Support groups, clear advice needed by parents living with CF

Pregnancies among adults with cystic fibrosis rising sharply in US

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A doctor examines a child who's sitting on his mother's lap.

As more adults with cystic fibrosis (CF) choose to become parents, they face unique challenges in balancing the responsibilities of caring for their children and managing their disease, a study highlights.

Researchers outlined several areas where care teams could be of help, such as working with prospective parents to develop strategies that help to balance treatment and parenting demands.

“We hope these results will better support CF care teams in addressing the challenges presented by the dual responsibilities of parenthood and disease management and can serve as formative research for future interventions for parents with CF,” the scientists wrote.

Their study, “A qualitative exploration of parenthood experiences and needs among people with cystic fibrosis,” was published in the Journal of Cystic Fibrosis. It was funded by the Cystic Fibrosis Foundation.

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Difficulties in balancing their and a child’s care needs

With the growing use of CFTR modulators — a recent class of therapy that help to boost the functionality of the mutated CFTR protein in people with specific disease-causing mutations — more and more adult patients are choosing to pursue parenthood.

And the number of pregnancies among patients in the U.S. has doubled, rising “from 310 in 2019 to [more than] 600 each year from 2020–2022,” the scientists wrote.

A team of scientists in the U.S. conducted interviews with patients who also were parents, asking about their experiences, support they had received, and struggles they faced. The scientists’ goal was to gather more information on how clinical care teams can support people with CF who are journeying into parenthood.

“As more [people with] CF are experiencing parenthood, CF care teams are increasingly confronting new questions and challenges. … Thus, CF care providers have an opportunity to optimize the care of parents and potential parents with CF,” the scientists wrote.

They interviewed 37 parents with CF: 21 mothers and 16 fathers. These patients ranged in age from 22 to 46, and nearly all identified as white and non-Hispanic. Some had become parents through a natural pregnancy, while others relied on assistive reproductive techniques like in vitro fertilization, and a few adopted their children.

Most of the parents were being treated with a CFTR modulator, and one reported having a child with CF.

Among the challenges of raising children while living with CF was that of balancing the needs of their own health and treatments with their responsibilities as parents.

“If I don’t get up early enough to do it [a treatment], then well now the boys are up. Oh, crap, need to get ’em breakfast. Whereas in the past, I would’ve just then ate breakfast and done my therapy because I wasn’t trying to get them to school. Just the added obstacles of … less leeway,” said a 38-year-old father of two.

A 36-year-old mother of two mentioned having “this little lightweight nebulizer and I plug it in the kitchen island and carry it around. I can put it in my pocket and move in this small space [laughter] make coffee and stir the eggs and … if somebody’s goin’ to school, make them lunch.”

People with CF are at increased risk of infections, so they are often encouraged to take steps to avoid contracting anything contagious. But, many parents of young children said, avoiding a child’s germs just isn’t feasible.

“I honestly cannot worry about [infections] ’cause if they got it it’s gonna hit me one way or the other, whether I distance myself or not. We all live in the same house, so it’s not like I can actually truly prevent the actual spread,” said a 31-year-old mother of two.

“He’s a very touchy-feely kid,” a 39-year-old mother said of her child. “I get lots of hugs and kisses. There’s just no way. If you’ve got a runny nose, I’m gonna get it.”

Relying on extended family, looking for a supportive community

In dealing with the challenges of being a CF parent, several interviewees said that they had found it helpful to rely on other people, such as extended family members, to help cover parenting responsibilities.

“We moved … to be closer to my parents about right when [my son] was about one, and my health wasn’t great. They now live across the street,” said a 40-year-old father of one. “I think that has been invaluable in terms of when my health is awry or just in general.”

Patients also expressed a desire for clear, honest guidance from their care team in juggling parenting responsibilities and CF care.

“The doctors still need to stay steadfast on what their medical opinion is,” said a 38-year-old parent of two. “I wouldn’t think it would be smart for a medical team to say, ‘if your kids really wanna [watch] Christmas movies, you can skip therapy.’ They need to still say, ‘No, this is how you need to do it because medically that’s the best answer.’”

Many also expressed a desire for clinicians to help connect them with others with CF journeying through parenthood, to help build community and support.

“Sometimes it would be nice to know that there’s other parents out there … I think I would just like reading other people’s experiences to see what works, how they do it,” said a 38-year-old father of two.

Taking these findings as a whole, the researchers noted several areas where clinicians might be able to better offer support, including helping to form support groups, and brainstorming with prospective parents about ways to best balance CF care with parenting.

“As the burden of sustaining daily care for many people with CF taking [CFTR modulator therapy] is decreasing,” the scientists wrote, “the results of our study are important as the concerns of and solutions employed by parents with CF may be shifting.”