Even very young children can sense when there’s a change in routine, when parents or guardians are having hushed conversations in the next room, or when the energy in the room is lower than usual. They know when something is happening to someone they love, and they need to talk.
“Kids are more scared about what’s not talked about,” Kelsey Mora, PLLC, certified child life specialist, said. “When you think that you’re protecting kids, they will turn around and protect you and not talk about it.” Mora worked for 10 years as a pediatric oncology nurse before returning to school for a counseling degree. She is now a licensed clinical professional counselor and chief clinical officer at Pickles Group, a national nonprofit organization that provides support and resources to children and teens whose parents or guardians have cancer.
Mora spoke with Jaime Weimer, MSN, RN, AGCNS-BS, AOCNS®, manager of oncology nursing practice at ONS, on the Oncology Nursing Podcast about how to support young families during a parent’s cancer journey. Among the conversation’s highlights, she shared the following tips for oncology nurses and other clinicians whose patients have children in their lives.
Don’t: Draw From Your Own Personal Experience.
Do: Look to the Evidence.
Empathy at times involves thinking about what you would do; however, your situation is unique and certainly differs from what your patients are experiencing. Mora advised oncology nurses to become aware of their hidden or implicit bias by listening to their patients and seeking understanding first. Then, lean on the evidence, such as a seminal study that Mora called the Pickles Group’s “north star.”
She recommended using the “Pickles Way” with your patients and teaching them how to use the methods with the children in their lives:
- Listen to what they are actually asking.
- Validate that whatever they are concerned about is the most important thing right now to them.
- Reassure them by recognizing that not all issues require solutions; sometimes, people just need to be heard.
Don’t: Wait for the Patient to Raise Concerns About Their Kids.
Do: Intentionally Ask First.
Patients have many things on their minds; don’t leave them alone, trying to figure it out on their own, Mora said. Talking to the children in their families is a critical challenge for many patients. And if parents or guardians raise concerns about young children, recommend that they talk to their child’s primary care provider about a pediatric psychosocial consult.
Don’t: Tell Your Patients to Keep Children Away.
Do: Encourage Patients to Involve Children in a Developmentally Appropriate Way.
Mora recognized that safe handling necessitates limiting children’s exposure to hazardous drugs and other harms. However, oncology nurses can make connections with children or grandchildren to make the “rules” seem less scary. For example, with older kids, nurses can more specifically explain the processes they’re following and the equipment they’re using. For very young children, nurses can encourage them to send a toy or other memento in the patient’s bag as a way to comfort both parties and help the child feel included in the experience. Many centers have a child life center that can also assist in supporting children.
Don’t: Withhold Information.
Do: Provide Developmentally Appropriate and Honest Explanations.
Start by thinking about what kids are going to see, hear, and notice that is different. Mora suggested that patients provide information in small bites and address questions as children raise them. When kids start asking harder questions, that usually means they are ready for hard information.
“’I don’t know’ is a real answer,” Mora said. “The burden of keeping things secret is counterintuitive.” When you talk to children in age-appropriate bites, they will start to trust that they will be told if something changes and can relax a little, she said.
Don’t: Be Afraid to Share Your Own Emotions.
Do: Talk About Feelings, Including Grief.
Children need to know that being sad and worried are normal, healthy ways of processing what is going on. Parents and guardians—and even nurses and other healthcare providers—can model how to handle their feelings and communicate with one another about this difficult topic. As Mora said, “It’s not realistic to feel happy at all times. Normalizing that for kids is so important.”
Talking about grief is also important. She explained that grief is intertwined in all aspects of a diagnosis. This can be the loss of the way things used to be, loss of being able to talk freely with peers, loss of time together during treatments and recovery. “It’s a bunch of mixed-up feelings,” she said.
Don’t: Ignore Changes in Children’s Behaviors.
Do: Watch for Signs That They Need Help.
Nurses can advise parents and guardians to watch for changes and disproportionate reactions in children so they can help them when they need it. Changes can include difficulty eating or sleeping, toilet regression, heightened fears, and behaviors that are out of proportion to the situation, Mora said.
Oncology nurses and other clinicians should also keep in mind that patients of any age may be raising children—not just adolescent and young adult patients or others of childbearing age. Guardians can include grandparents, aunts, uncles, and other family members. Assess each patient’s situation and incorporate Mora’s tips when appropriate.
Some kids may need more intensive support, Mora concluded, but being honest, open, and observant can help to prevent long-term implications.