Raising the Chronically Ill Child

By Anita M. Schimizzi, Ph.D.

While many of us are fortunate enough to have healthy children, not all families are so lucky.  They must confront the chronic illness of a child on a daily basis.  What are some key factors that can help them do this successfully?  Read on about an article that I came across. 

Marchs APA Monitor included an article about caring for children and adolescents with chronic illnesses.  The author, Elizabeth Leis-Newman, looks at the difficulty parents have with the switch from doing all of the child’s day-to-day treatment to having the child/teen manage his/her own treatment.   She discusses three things that are linked to parents handing over treatment responsibility, sometimes too early: not fully understanding the illness and treatments, the difficulty of raising the chronically ill adolescent, and parent depression and anxiety. 

In looking at parent knowledge of the illness, the author cites a study by Kristin A. Riekert, PhD and colleagues (2003) where the researchers found that poor doctor-parent communication led to less treatment adherence for asthma.  For example, when parents were not fully informed of the need for regular medication use they would discontinue it when the child appeared to be symptom free. 

 A current longitudinal study by Avani Modi, PhD at Cincinnati Children’s Hospital Medical Center is tracking treatment follow-through in young patients with epilepsy.  Current findings show that parents are often inconsistent with giving medication to their child.  Modi also talks about “white coat compliance” where parents restart medication when it is time to visit the doctor, oftentimes giving incorrect readings of drug levels and risking being prescribed the wrong dose.  

The bottom line appears to be that doctors and other medical professionals must take the time to fully discuss the details of the illness as well as the importance of keeping up with day-to-day treatments.  On the other hand, it would probably be a good idea for parents to ask their child’s health care providers as many questions as it takes to feel that they understand the child’s illness, ongoing treatment needs, and the risks of making any changes to day-to-day regimens.

Modi states that the rocky adolescent years can be quite exhausting for parents to cope with, especially when that adolescent has a chronic illness that must be managed.  Due to the challenges of this age group, adolescents may end up with more responsibility than they can actually handle.  While teens may resent it when they feel that parents are meddling in their lives, Alexandra Quittner, Ph.D. reports that her research shows that when parents are simply physically present it can make a big impact on whether or not the teen does the treatment and does it correctly.  In other words, just being in the same room matters.

Caring for a chronically ill child comes with many challenges and a lot of times caregivers, which are most frequently mothers, may not have the support they need and this can lead to more depression and/or anxiety.  Suzanne Bennett Johnson, PhD reported that research suggests that as mothers are more depressed, treatment adherence tends to go down.  Quittner concluded that medical professionals will need to watch out for signs of depression and anxiety and screen for it not only in the ill child, but also in caregivers so that good supports can be put in place. 

To sum up, parents of chronically ill children and teens would likely benefit from having a strong connection with medical providers.  Parents are encouraged to take small steps as teens work to take on more control over their treatment.  It is also recommended that parents stick around during treatment time even when the teen can do treatments on his/her own.  Finally, if parents are feeling overwhelmed with the medical, financial, and/or emotional stresses that can come with having a child with a chronic illness, do not hesitate to seek support.  It is out there.

Source: Leis-Newman, E. (2011, March). Caring for Chronically Ill Kids: Many Parents are Struggling to Manage Their Children’s Care. Here’s Why. Monitor on Psychology, 42 (3), 36-39