A diagnosis of a chronic health condition, such as asthma or diabetes, can have parents navigating a new and unfamiliar world. Add in strong emotions that accompany the news, and it’s understandable why families can feel overwhelmed.
Cailly Howell-McLean, MD, pediatrician at Nationwide Children’s – Toledo Franklin Avenue Primary Care Center, says families don’t have to figure it all out immediately—or alone.
Take time to adjust
The first challenge families face is simply accepting the diagnosis. “It’s normal to feel overwhelmed, scared or frustrated,” Howell-McLean explains. Parents need time to process those feelings, while learning about the condition and treatment options, including medications, therapies, recognizing symptoms and becoming familiar with possible complications.
Parents should ask questions and participate in care decisions. “We’re here for you,” Howell-McLean says. A child’s pediatrician, along with the family’s larger support network, can help parents sort through practical and emotional aspects of a new diagnosis.
Focus on your child—not the diagnosis
How families talk about a chronic condition can shape how children see themselves. “A child is not defined by their diagnosis,” Howell-McLean said. Parents’ attitudes matter. Children take cues from their caregivers, so becoming comfortable talking about the diagnosis can help make it less frightening or isolating for the child.
Seeing other children who share the child’s condition participating in sports, attending school, pursuing goals and simply living everyday lives can help children understand that their diagnosis is only one part of who they are. Most importantly, Howell-McLean encourages families to keep the conversation going. “Talk openly about treatments, appointments, medications and accommodations in an age-appropriate way,” she recommends.
Make treatment part of the routine
Daily treatment is less disruptive as a predictable part of family life. Howell-McLean compares chronic-condition management to something children do daily: brushing their teeth. “We take our medication or do our breathing treatment to promote health and wellness, just like brushing our teeth every day,” she said.
Parents can also encourage children to connect treatment with the benefits provided. For a child with asthma, for example, following a treatment plan can mean being able to run around a playground, participate in sports or enjoy other activities without symptoms getting in the way. When appropriate, the entire family can participate in healthy habits that support the child, such as making nutritious food choices or staying physically active.
Build a team and rely on it
One mistake Howell-McLean sees families make is not including others in the child’s circle of care. A child’s support system can extend beyond parents and physicians to include school nurses, pharmacies, emergency departments, counselors, care coordinators and community organizations.
Parents should share with the pediatrician when something isn’t working, including when practical barriers make it difficult to follow a treatment plan. Healthcare providers may be able to suggest alternatives, connect families with resources or communicate directly with a child’s school.
Families should also reach out to the care team when symptoms change, such as new or worsening symptoms, missed school, difficulty participating in favorite activities or changes in a child’s usual quality of life.
Above all, Howell-McLean encourages families to spotlight a child’s individuality. “Every child has their own personality, thoughts, hopes and dreams,” she relates, adding, “A chronic condition may be part of their present and in some cases, their past and future, too, but it shouldn’t define them.”
