CF WELL: Designed for and by Kids and Families

What if a program designed to help kids and adults with cystic fibrosis was actually created by those who lived every day with the disease? CF WELL, an acronym for Cystic Fibrosis Wellness Education and Learning Laboratory, is just such a program.

The program’s goal is to identify what works from a variety of sources, but particularly from children with CF, their parents and the healthcare providers who work with them. The learnings will then be shared with similar groups throughout the country.

“We have used a deliberate process to understand the needs of families with a CF child to achieve a higher level of resilience and quality of life,” says program director Thomas Boat, MD. Boat and his team have so far conducted needs assessments via surveys of parents, children and adult patients with CF. They have also interviewed health professionals on the Cincinnati Children’s CF team.

Our plans are to disseminate what we learn to other CF centers and other chronic disease programs, here and elsewhere. CF WELL is a parallel program with the fledgling CF Learning Network sponsored by the Cystic Fibrosis Foundation.

Thomas Boat, MD

Elizabeth Hente, MPH, the program’s coordinator and manager, says families have identified some key needs. “Families have told us they are looking for help with getting better quality and quantity of sleep, more aerobic exercise, stress reduction measures and better advocacy for children with CF in school systems to improve academic success.”

Based on these needs, Hente says, the CF WELL team has launched a number of interventions.

They are having physicians assess family sleep at the time of clinic visits, and offering sleep improvement interventions for parents and patients by referring them to sleep medicine professionals.

CF WELL is providing an introduction to mindfulness as a stress reduction technique, first to health professionals on the CF team, and then to families. Richard Sears, MD, a member of the UC Integrative Medicine faculty and nationally recognized mindfulness instructor, has led six sessions with the Cincinnati Children’s team, who have reported benefits in pre and post intervention surveys.

The team is assessing family levels of stress related to pulmonary function testing and offering stress reduction options before the testing. Pulmonary function testing determines whether a patient’s lung disease is progressing.

They have hired a school intervention specialist, Sarah Strong, to assess CF children’s needs and to improve school responses to these needs. She interviewed CF families this summer to determine who needs assistance in achieving school success early in the school year.

Karla Foster, an exercise physiologist on the CF team, is creating an online video series of games that promote aerobic exercise for preschool-age CF children and their families.

For families whose infant is newly diagnosed with CF, a team of health professionals led by Jeanne Weiland, MSN, APRN, PNP, a cystic fibrosis nurse practitioner, has created an educational approach that emphasizes dimensions of wellness for the family that can be introduced from the beginning of the CF care program.

“All of these activities will be assessed for outcomes such as how well they are adopted by CF families, as well as the family’s and patient’s sense of wellness, quality of life and ability to sustain daily treatments,” says Hente.

The interventions were presented at the North American CF Conference in November 2017, with the idea of disseminating the concept as well as early results of CF WELL activities.

“Our ultimate goal is to incorporate those elements of CF WELL that are shown to be beneficial to families into the CF Care Model,” says Boat. 

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