By Christine Moffa, MS, RN, clinical editor at AJN
Ever wonder how the staff at AJN decide what to put on our covers? We wanted an image that celebrated the summer, but we also wanted a tie-in with our CE feature. The August cover depicting children running down the beach at Sunny Shores Sea Camp, a four-day summer camp that caters to children with cystic fibrosis (CF) and their families, is a perfect fit.
Some former colleagues once volunteered at the camp. Several years ago I was working on a pediatric floor where several of our patients had CF, ranging in age from toddlers to adults in their 30s. CF was long considered a childhood disease, due to a short life expectancy associated with it; even though life expectancy has drastically increased, these patients are still often treated on pediatric units, regardless of their age. This month’s CE, Original Research: Parents and Children with Cystic Fibrosis, is by Paula Harff Lomas, MAS, RN, CCRP, and Susan B. Fowler, PhD, RN, CNRN. According to Lomas and Fowler,
“More people with cystic fibrosis are living longer, reaching milestones like starting college, embarking on careers, and marrying. Many adults with cystic fibrosis are interested in starting families; one recent review notes that the number of live births to women with the disease has increased significantly. Thus, there’s a greater need for age-appropriate care in areas such as fertility and reproduction.”
The purpose of this descriptive study was to estimate the number of adults with CF who are parents of children with the disease. Of the 66 patients identified, 39 were first diagnosed after prenatal testing or their child’s diagnosis. The authors write: “The parents will need to come to terms with having a life-threatening illness and learning to adhere to a complex and time-consuming treatment regimen—while also facing these challenges with regard to their child.”
The nurse caring for CF patients who also have children with the disease can
- act as liaison to other caregivers, such as the patient’s genetic counselor, primary care provider, obstetrician, nurse midwife, and nutritionist.
- offer psychological support or referral to a mental health provider.
- refer the patient to the local cystic fibrosis care center.
- explore various time-management techniques for time-consuming treatments.
- encourage patients to adhere to treatment recommendations so they may serve as good role models their children.