Talking with Your Child
“It’s so hard to get my child to open up. How can I get her to talk about what she is feeling?”
When you are facing yet another development in your child’s illness or the reality that her condition is worsening, how do you get your child to talk about how she is feeling? Perhaps she is feeling too sick right now or too angry to be conversational. Perhaps she is feeling anxiety about what she is feeling and what will happen next? Will she get better at this stage or should she start to accept a different set of hopes and goals? (These feelings may be very similar to your own.) If your child’s condition has changed for the worst, she may sense this even if you haven’t told her. She may have noticed that the routine has changed, i.e., that the number of appointments, treatments or therapies, or visits to specialists has either increased or decreased. She may feel like she is being treated differently without really knowing exactly how.
In any case, communication is crucial between you and your child. You may not feel comfortable with delicate discussions about goals and hopes. You may feel vulnerable. Before starting the conversation, take a moment and think about your child’s illness, new developments, and try to determine what you think that your child understands at this point. Think about how you have structured previous conversations. You might start by explaining things that you know she already understands and then move on to newer information. Some children can better absorb information if it is discussed in smaller pieces over a period of time instead of having a “one time, tell all” conversation. Other children do better hearing it all at once and then discussing it afterwards. Trust your instincts about what topics you can discuss and how much you can probe. You know your child best!
It is important for you to make it clear that you will love her no matter what has happened and what is anticipated. The feelings of security and safety that she derives from your unconditional love are paramount for her to find peace and acceptance.
Despite the underlying disappointment and sadness of this conversation, it is important to offer hope and encouragement. You both need to feel hope to get through each day. You shouldn’t feel dishonest or insincere about your encouragement because it is critical. Discouragement can be very damaging for both of you if it becomes pervasive. While disappointment and even devastation is certainly a normal response to difficult news, hope generates an energy that motivates us and keeps us going during difficult times.
When talking to your child, focus on the present, discuss her goals and preferences, and remain open to options and opportunities. Younger children will naturally focus on the here and now. Talk to them about the plan for today and the immediate future. Reassure your child that you will advocate for preventing hurts and treating those she already has. Older children often have the tendency to try to go it alone so they don’t feel weak or vulnerable and to protect you from their worst fears. They may be more comfortable talking to peers with similar conditions, either through support groups, recommended chat rooms, or institution- referred families. Some might be willing to speak with a child life specialist who “plays their way” through conversation about feelings and fears.
Regarding the severity of your child’s condition and upsetting changes, it would be a good idea to talk to your physician and health care team about how to approach your child and what to say. Perhaps a member of the health care team could be part of that discussion either initially or after you have had a chance to ask questions without your child present. Together you can gauge what is best and when to have those subsequent conversations.
Regardless of the stage of illness, there should be a consistent message that there will be aggressive efforts to keep her well and mobile. Moreover, her goals and preferences will always be honored. Now is the time to regroup with your child and discuss what is important to her now. How can you help her with this information? What questions does she have and what information does she need? Make sure she knows that it is okay to feel confused, scared, or angry, and that she might feel many things at once.
During discussions with the health care team, make sure that your child understands all of the information and terms. The language and tone of the discussions should convey complete reassurance and confidence. If you feel that the health care team is not communicating well with your child, or even confusing or frightening her, you have every right to provide feedback about what they could do better. “Medicalese” can be confusing for adults as well as children. Plus, children may be intimidated by physicians and health care workers, especially when they are already scared and sick. If your child has questions, it might be a good idea for her to prepare these ahead of time. You could also help your child feel more comfortable by practicing the questions and modeling how to question and seek answers for them. Try to help your child find her own voice and speak up to those caring for her.
No matter what age, each child will attempt to make sense of her ongoing or worsening illness in her own unique way based on her personality, her previous experiences, how she is treated, how safe she feels, how much discomfort she has, etc. You can do a lot for your child by helping her find her own way to deal with this life changing experience. She will discover things about you and herself that she would never have known without this happening. All of you can grow in love, courage, patience and resiliency, strength and hope – together.
Finally, honesty and information offered in a manner that is gentle, loving, and age appropriate will allow her to explore how to digest new information and react to the changing face of her illness. Remember, she is a child first and a sick one second.
Article contributed by Liz Sumner RN, BSN