A mom with breast cancer, an uncle with congestive heart failure, and a grandfather with end stage liver disease on life support. What do all of these have in common? Children.
Children of adult patients with a chronic or serious illness often go overlooked in the world of adult medicine. Whether it is a parent, aunt/uncle, grandparent, or even great-grandparent diagnosed with a serious illness, children can be greatly impacted by this situation. This is where a child life specialist can help.
Across the Baylor Scott & White Health System – North Texas, there are 6 child life specialists who can be found helping to support these children. Many times we are asked, “How does that work?” or “How do you help the kids if they aren’t at the hospital?” People are surprised when we say, “actually about 50% of our visits are with only the adults involved in the child’s life.” Even though we are equipped with a child life skillset, our role encompasses a different approach than what you typically see in a pediatric setting.
- We work with parents and adult caregivers to offer education and insight on ways to tell their child about their illness, and encourage them to address the three common concerns children have when a parent is seriously ill: Did I cause it? Can I catch it? Who will do the things my special person does while they are sick? (1)
- We educate on the importance of keeping children informed through the medical journey, and about developmentally-appropriate and common reactions children may have when trying to cope with serious illness.
- We advocate for children to be able to visit their loved one while in the hospital, when the children want to visit. We often help prepare them to see a loved one for the first time in the hospital.
- We provide scripting to adults when they need help explaining that their person is going to die, or has died. When a family is ready for their child to know what is going on but can’t find the words, we support the adults by serving as their voice and informing the child of the situation.
- We promote children being able to say good-bye to their loved ones when appropriate, both before and after a death.
- We help children and adults alike create legacy items and keepsakes, such as thumbprint hearts and handprint posters.
We also work directly with children to turn potentially frightening situations into something memorable and special for the child and family. We have found children often have an easier time talking about how they are feeling when they are busy doing something with their hands or having fun. Here are ideas we’ve found helpful:
- Reading books (bibliotherapy) with children to learn more about their loved one’s illness and to help them understand their person’s illness, poor prognosis, identify feelings, better cope with separation due to a hospitalization or death, and help them understand more about their person’s impending or recent death.
- Creative opportunities for children to cope with the situation, such as medical play, feelings-based and family connection activities, and positive memory-making.
- Normalized play to help children transition from this deeper emotional work, such as games, coloring, action figures, puzzles, or any play the child finds enjoyable.
- Legacy work to assist children anticipating or coping with the death of their loved one. These interventions can include thumbprint hearts, handprint posters, memory boxes, or mosaic crosses.
If you ask Dr. Robert Fine, Clinical Director, Office of Clinical Ethics and Palliative Care, what made him decide to add child life specialists to his team, he will tell you about a time he was asked to tell two school-aged children their dad was dying. After telling the children, he recognized not only that he was ill-equipped for the task but that there was a serious need for a team member specializing in supporting children with the emotional disturbances that can arise from having a seriously ill loved one. With that, the child life team was born and has grown from one to six team members since 2011.
- McCue, Kathleen (2011). How to help children through a parent’s serious illness. New York: St. Martin’s Press.
Magellan Taylor, MA, CCLS is a Certified Child Life Specialist for the Supportive and Palliative Care team at Baylor All Saints Medical Center in Fort Worth, Texas. Her role involves supporting children, ages 0-18, who have an adult loved one with a serious, life-threatening or life-limiting illness. Magellan has a Master’s degree in Human Development and Family Studies with an emphasis in child life from The University of Missouri. She believes working with children and families facing end-of-life situations is truly her calling, and has a passion for serving others during these critical moments.