The Doctor is in—

Questions and answers about behavioral and
emotional problems in children

JILL WEISSBERG-BENCHELL, PHD

aFall 1999

Families who share medical-care responsibilities can help balance dependence and independence during the gap between young childhood and young adulthood.

I am caring for a child with cystic fibrosis. Our practice has always encouraged the parents to be diligent in the care of their daughter. They have carefully monitored her progress, and she has done well. The patient is now 10 years of age and is demanding more control over her regimen. Her parents are anxious about shifting this responsibility to their daughter. What recommendations should I give to the family?

The goal of every parent is to raise a happy, well-adjusted confident child. When a child has a chronic illness, those goals become more challenging because parents worry about their child's physical health and the daily medical care demands that must be completed (aerosols, bronchodilator, chest PT, antibiotics, exercise, etc.) At the same time, parents want to help their children achieve age-appropriate levels of independence in a wide variety of areas such as school, peer relationships, chores, and responsibilities for self-care.

On one hand, parents need to insure that their child's daily medical regimen is completed. On the other hand, parents don't want to become "medical police," constantly monitoring and or nagging their child about every aspect of their medical regimen.

So how do you advise parents about helping their child grow and become independent? The answer is interdependence, or family support, for the tasks of the medical regimen. Families who share these responsibilities typically raise young adults who are more willing to maintain consistent levels of self-care and who don't "burn out" in response to the medical regimen's demands.

Illness affects everyone in the family. Therefore, the more family members talk to each other, solve problems together, and share in the responsibilities for medical care, the healthier (both physically and psychologically) the family will be. Families that form such a partnership often have less conflict and feel more supported than families in which the responsibility is given over to the child.

When a child is very young, parents must be completely responsible for their child's medical regimen. Eventually the child grows up and is on his or her own and needs to be ready to take charge. The concept of interdependence applies for the time in-between young childhood and adulthood—that gray area for all parents, regardless of the child's health status.

Each family is different. Nevertheless, here are some guidelines for you, a member of the health care team, to review with the family:

How well can the child understand and act upon the information you teach him or her? Children with learning disabilities may need more support and need to learn specific strategies to help them remain organized and to monitor time.
What is the child's emotional maturity? Do the parents think their child can handle the emotional burden of being responsible for their own health care tasks?
How does the child generally handle frustrations and challences? Are they very shy and concerned about how others may think of them (for example, would they take medication in front of peers?), or are they more out-going and self-assured?
Is this family experiencing other stresses right now?
What is the family's schedule, and who is home when? Trying to share responsibility for tasks when only one member of the partnership is home may be a prescription for frustration.
How can the other children in the home help? What role can they play in the family's shared responsibilities?
What are the parents' expectations for the daily regimen and what are those of the child? If any member of this partnership expects perfection (what winning team is perfect?) then the likelihood of frustration and feelings of failure is high. If all agree upon realistic and achievable goals, then they have the beginning of a winning partnership. Keep in mind that the health-care team is always available to help set those goals.

The more comfortable parents become in thinking about these issues and in discussing them as a family, the easier and more successful the family team will be. As the answers to these questions change over time, the balance of who is responsible for what will also change. But it changes with the agreement and comfort of all members of the team.

Most parents say that they would give anything to be the one with the illness instead of their child. When a family forms a partnership in caring for a family member with a chronic disease, the healthy family members get as close as they can to experiencing that disease. The child then receives their parents' and siblings' help, their time, and their support. In this way, parents provide the nurturing support that helps their child become a healthy and independent adult.

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