Teaching Self-Management Skills to Children with Cystic Fibrosis
When a child has a chronic health condition like cystic fibrosis (CF), it’s common for parents to have a hard time releasing control over their child’s CF treatment regimen. Parents worry that their child will forget to take their enzymes or medications, avoid breathing treatments or skip much-needed snacks and meals. However, it’s important to remember that you’re not raising a child, you’re raising a man or woman who will one day live an independent adult life.
People born with CF today are likely to live into middle age, if not longer, and they must be equipped with self-management skills in order to succeed. Plus, sharing responsibilities for CF care with your child helps lighten your load.
Start small and build on skills
Knowledge is powerful. Early on, you can teach your child basic information about cystic fibrosis and important, yet basic, self-care techniques such as the need for handwashing. As the child gets older and more mature, you can gradually teach them to take over various aspects of their care under your supervision.
When to start teaching self-management skills
Believe it or not, the process of transitioning a child with CF to adult care begins as early as age 8. For example, even a young child can help you remember to take enzymes before eating or set up the equipment for their breathing treatment.
By the tween and early teen years, a child with CF should understand enough about their condition and their own symptoms to answer the questions of their CF care team and disinfect their equipment. This gradual educational process continues until by age 18, your teen with CF is ready to manage their own care, from making doctor’s appointments to refilling their prescriptions.1
The role of the parent or caregiver over time
Ideally, a parent’s role in CF caregiving changes slowly over time. When a baby or young child has cystic fibrosis, their parent “owns” their care and serves as the primary provider and teacher. Around age 10, their parent is still the main prover of care but is slowly moving into more of a manager role while providing their child with opportunities for self-care.
In early high school, ages 13-15, the caregiver should delegate and monitor as a partner in their teen’s care. By ages 16-18, the parent should provide oversight and assistance when needed. Finally, in early adulthood, the young person with CF should “own” their care, with their caregivers providing support only when asked.2
The benefits to involving your child in their care
Research has shown that children who are gradually educated about their CF and slowly learn responsibilities of self-care remain healthier than their peers whose parents don’t involve them in their care.