Having a chronically ill child is a stressful situation for parents.
Katherine Rafferty, lecturer at Iowa State University, discusses how parents can become advocates to ensure their child gets the best care possible.
Katherine Rafferty is a lecturer at Iowa State University and teaches a variety of communication courses to undergraduate students. Katherine is the Director of the Family Health Communication Research Lab, where she works with a team of undergraduate students to study family health communication issues, specifically how patients and their family members cope with illness and end-of-life care. Katherine earned her PhD in Communication from the University of Wisconsin-Milwaukee.
Doctor Parent Communication
Imagine how you would react if your child was diagnosed with a chronic illness. Today, 1 out of 5 parents in North America have a chronically ill child, and for many of them their immediate response is to be an advocate. In short, advocacy involves the act of ensuring that their child receives the best medical care possible. This occurs by navigating and effectively communicating with doctors, as well as family and friends about their child’s illness.
In our current study, a team of undergraduate students and I found parents are strategic in how they manage and share private information about their child’s complex medical condition. We found they employ two main strategies: maintaining positivity and avoiding negative talk.
Positivity was vital when talking with their sick child, and parents often used humor or sarcasm as a means to add levity to the difficult hardships experienced. Negative talk was deemed too emotionally taxing or not constructive toward managing their child’s treatment.
In addition, we also found that parents had different motivations for disclosing or concealing information Parents primary motivation when talking within their nuclear family centered on constructing a “new” normal and avoiding certain topics. One mother whose son has cancer told us about the difficulties in getting her son to discuss life and death issues because “he just wants to be a normal kid.”
Parents discussed the importance of being assertive when talking with health care professionals to find the “right” medical team for their child and remaining open with family and friends as a means to cultivate a network of support.
Altogether, our findings highlight the strategic approach that is required of parents in order to balance their roles as advocate, caregiver and parent, and optimize their child’s quality of life.
