When you have a child with a chronic illness, such as cystic fibrosis, diabetes, cancer or chronic kidney disease, you might feel like caring for him or her is a full-time, permanent job.
“When you have a child with a health condition, it’s like the whole family is ill and has to manage this disease,” says UNC Health pediatrician Maria E. Diaz-Gonzalez de Ferris, MD, MPH, PhD, who specializes in helping children with medical conditions as they transition from childhood to adulthood.
But with time, many children with chronic illness can become young adults who help manage their own health. Of course, the extent to which a child can live independently is dependent on the condition itself, but parents can take steps to maximize self-sufficiency in their child.
Dr. Ferris says parents will want to keep these three things in mind as their children grow up.
Your parenting style can affect how well your child manages treatment.
One of the most important drivers of a successful transition from childhood to adulthood for children with chronic conditions is the type of parents they have, Dr. Ferris says. Nobody is a perfect parent, or even close, but the stress of parenting a child with a chronic illness can result in some unhelpful patterns that are best avoided.
Dr. Ferris has studied what she calls “helicopter parents,” who hover around their children constantly in an effort to protect them and keep them safe. However, this prevents children from learning to take responsibility for their own health and care. The result can be “young adults who must depend on their parents,” Dr. Ferris says.
Of course, you don’t want to do the opposite and be hands-off, either, Dr. Ferris adds. The parenting style that seems to result in the healthiest transition from pediatric to adult care is what Dr. Ferris calls the “authoritative parent.” This parent type is involved in treatment and communicates health information to their child but also finds ways to involve the child in decision-making and care.
For example, if a child has diabetes, he or she should learn how to monitor and manage blood sugar, in an age-appropriate way. Your child’s doctor can help you determine how much responsibility to give your child based on development.
“The parent needs to be included in helping their child be successful because they need to be able to let go and have trust in what they’ve taught,” Dr. Ferris says.
Family cohesion is vital for success.
Studies show that how well the family works together can predict how well a child can transition to caring for himself or herself as a young adult.
“If the family’s not cohesive or they don’t support the healthcare providers, it can negatively affect the child’s success,” Dr. Ferris says. “If everybody thinks and plays like a team, there is a better chance for success.”
Siblings must be part of the team, too. That means they know how to get help in case of a health emergency and, depending on age, can assist with care in limited ways. For example, a child with cancer who just received treatment might have a sibling who can entertain him by reading stories or choosing a movie.
It’s also important that healthy siblings don’t feel neglected by their parents, Dr. Ferris adds. Whenever possible, give your other children one-on-one attention and opportunities for activities that have nothing to do with their sibling’s illness.
Prepare for your own difficult feelings.
Any parent whose child grows up and becomes more independent can have complicated feelings; often, relief and excitement are coupled with some sadness.
For parents of children with chronic illnesses, these feelings might be even more varied and intense. You might feel grief at what your child’s future won’t hold, or fear about what it will. You may feel proud of your child for how he or she has handled adversity or concerned that your child isn’t ready for the next step. You might feel overwhelmed by treatment plans that keep evolving and exhausted by years of caregiving.
Or you might feel all these things at the same time. Don’t forget to make an effort to take time for yourself, whenever possible, to rest. Talk to a trusted friend or a therapist about your feelings and find an outlet that helps you feel better, such as exercise or a hobby.
“Families with children who have chronic conditions are not alone, even if the condition is very rare,” Dr. Ferris says. “Ask your health team for help, be open and frank with one another and smile, it is contagious.”
Don’t have a doctor? Find one near you.