Last week, I wrote about new guidelines from the journal Lancet describing how to speak with young people about their life-threatening diagnosis. This week, I would like to explore the journal’s companion article focusing on communicating with kids about a parent’s illness. Accessing the full article requires payment, so let’s summarize here. How can you help a young person understand their parent’s life-threatening or life-limiting diagnosis?
Just in the United States alone, an estimated 2.85 million children live with a parent diagnosed with cancer. Extending these numbers to all serious illnesses and to the worldwide population makes the need for compassionate communication surrounding a parent’s illness obvious. Like last week, the current guidelines are written for professionals working to communicate with young people and their families, but many of the suggestions are useful for parents, as well.
The review, written by a panel of experts, starts by asking and answering the following three questions:
“First, what is the evidence that communication with children about parental life-threatening conditions is important? Second, what is the effect of communication on children and adolescents’ emotional, behavioral, and health outcomes? And what is the effect of communication on parents and the wider family system? Third, what factors influence the process of communication? And what are the barriers and challenges to communication?”
To summarize the answers, children are generally aware of a parent’s condition, even when the parent’s intent is to keep it hidden. Studies show that withholding information can increase a child’s anxiety and distress, even leading children to feel some degree of responsibility for their parent’s condition, and others to fear they may be at risk themselves.
“When children are not given information about their parent’s illness, they attempt to make sense of the situation on their own. Children’s beliefs can be more dire than the truth,” the study writes, pointing out that acknowledging the problem allows children to access support. Additional studies show that communicating about a parent’s life-threatening diagnosis can decrease post-traumatic stress in children long after the condition has reached its resolution.
The biggest barrier to communication is the fear of causing distress — parents don’t want to create a difficult emotional experience for their children, and, interestingly, children often refrain from voicing their observations of a parent’s health because they don’t want to upset the parent. In other words, parents trying to protect their children, and children trying to protect their parents leads to a situation that is worse in the long run for both.
The solution, of course, is communication. But as you can imagine, this communication is nuanced, with the style and amount of information depending on many factors including a child’s age and developmental level. However, parents’ fears about “not doing it right” seem to be outweighed by the benefit of information, no matter how it is delivered.
“Children consistently report wanting prompt, clear, and simple information about their parent’s diagnosis, planned treatment, and prognosis,” the study writes. “The risk of creating anxiety is outweighed by children’s desire for information.”
In this conversation, one of the major goals can be to help children understand what will happen next — in many serious illnesses, parents and healthcare providers don’t have all the answers, but exploring the possible roadmap of changes, including physical and emotional shifts due to the condition or treatment, can allow young people to start wrapping their heads around what the future will hold. Children also report wanting to know a parent’s needs so that they can help.
It’s hard to even imagine speaking to a child about a parent’s or your own diagnosis. How do you start? What do you say? How can you keep your own emotions in check? But if there is one thing you take away from these thoughtful and well-researched guidelines it should be that saying something is almost always better than saying nothing. Kids know. And by helping them know the truth we can help to guard against the anxiety, guilt and fear that come with uncertainty.
Dr. Pikiewicz earned her PhD in Clinical Psychology at Pacifica Graduate Institute in Carpinteria, CA. She completed pre-doctoral training at the Nan Tolbert Nurturing Center in Ojai, CA, and her post-doctoral internship at the Boulder Institute for Psychotherapy and Research. At both sites, Dr. Pikiewicz worked with a range of adult, adolescent and child clients in individual, couple, family and group settings. She also holds a B.S. in environmental science from Allegheny College and a teaching credential from Western Washington University.
