What can I do?
That’s the question on the mind of everyone living with and affected by cystic fibrosis (CF). The answer? There’s plenty you can do—starting with the ideas in this toolkit—to make CF care better.
Across the country, Cystic Fibrosis Foundation care centers are focusing on quality improvement—making the care they provide better for everyone. But they need your help. They need your input, your opinions, your involvement. After all, you are the expert in receiving care from your care center and living with the day-to-day challenges of CF.
Quality improvement is not a feel-good fad. It’s the future. And though we already know about how quality improvement can change lives, we have only scratched the surface of its possibilities.
The Cystic Fibrosis Foundation created this easy-to-use toolkit for you and others at your care center. You’ll find lots of ideas for getting started, tips for succeeding and inspiration from people just like you.
Please join the growing number of people with CF and their families who are partnering with caregivers in the name of progress.
How You Can Improve Care at Your CF Care Center
People with CF and their families play a big part in quality improvement work. Start by asking some questions:
- What would ideal CF care be like for you?
- What works really well at your care center?
- How could you receive even better care?
With these questions in mind, talk with your care center Director and/or clinic staff. Together, you can figure out what changes you’d like to see, and which ones should come first. You can use the ideas below to help you get started.
Remember: Change will not happen overnight. But by working together, we can continually improve CF care!
Easy Ways to Get Involved at Your CF Care Center
- Reach out to care center staff and hospital administrators to talk about building an effective quality improvement partnership using our template letters
- Volunteer for or start a new Advisory Group focused on how to improve care
- Take part in your care center’s efforts to improve quality by joining focus groups and answering their surveys
- Share your ideas for new education materials, including your care center’s Web site or a newsletter for/by people with CF and their families
- Create or help with CF community support groups
Learn how to develop a Parent-to-Parent Network
- Help develop and present Family Education Days for others in your care center
- Share ideas for better CF care with health professionals who are not a part of your care center, like hospital staff or diabetes and ENT specialists
- Speak during staff orientation and training sessions about:
- Care needs of people with CF and families
- Concerns about infection control
- Tips for meeting snack, calorie and nutritional needs
- Host a dinner to share your knowledge and day-to-day experiences of living with CF with professionals-in-training, like new residents, fellows, medical students, nurses, therapists or social workers (both hospital and clinic)
- Create peer mentor or family liaison positions to help others (for newly diagnosed, first hospitalization, etc.)
- Raise awareness by meeting with local, state or federal government representatives, funding sources or other community groups
NEXT: Use these tips to start and maintain successful quality improvement partnerships. To learn how non-CF health clinics are partnering with their patients visit http://newhealthpartnerships.org.
Adapted from Jeppson, E. & Thomas, J. (1994). Essential Allies: Families as Advisors. Institute for Family-Centered Care, Bethesda, MD.
For additional resources, visit www.familycenteredcare.org.
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