By Victoria M. Rizzo, LCSW, PhD, and Kristen Kirkland, MSW
In part as a result of advances in early disease detection and trends towards later marriage and child bearing, today’s parents are more likely than ever before to develop a serious illness, such as advanced cancer, heart disease, or AIDS while raising their children. When serious illness strikes a parent, the entire family is affected. Life becomes filled with uncertainties and fears. Parents find that they must quickly prepare for some of the most difficult conversations of a lifetime: talking with children about a parent’s serious illness.
Parents who do not have an opportunity to prepare for these conversations are likely to delay, communicate less than effectively, or seek ways to avoid such conversations entirely. Some children of such parents may be resilient enough to survive a parent’s serious illness without too many adverse effects. But other children will be confused, stressed, and isolated by a parent’s inability to confront and converse about life threatening illness and to ensure that children have the information and support they need.
When a parent faces a serious illness, time, money, and physical and emotional fortitude are scarce. They may have many concerns about their children. “What should we tell the children?” “How can I be honest while also reassuring my child about the future?” “What can I do to support my children during this difficult time?” A fortunate adult will find just the right book, learn about a helpful Web site, receive the guidance of a social worker or a member of the clergy, or have a helpful talk with someone who has previously faced this same challenge. Others are not so fortunate.
For parents diagnosed with serious illnesses, navigating through this wealth of information to find just the right resource may create additional stress at a time when they are already feeling fragile and overwhelmed. Parents may have limited time or energy to address the needs of their children, let alone search for the information they may need to talk to their children about their illness.
The following excerpt from Conversations from the Heart: Resources for Talking to Children About a Parent’s Serious Illness. was developed by Janet Perloff, PhD, developed (along with Victoria M. Rizzo, LCSW, PhD), after her own diagnosis of breast cancer.
Have Confidence in Yourself: You will find your own way to communicate and provide support for your children during difficult times. Although you may not be able to fully protect them, you can help them learn the skills they need to effectively cope with life’s difficulties. Just do the best that you can.
Have Confidence in Your Child’s Ability to Understand and Cope: Believe in you child’s inner strength and resilience.
Take Your Time: Take some time to attend to any immediate medical challenges, make treatment plans, and get a grip on your own emotions before talking to your children. This may help you communicate more effectively with them.
Get the Help You Need: Before you talk with your children, you may find it helpful to consult with family and friends. Or you may want to talk with a social worker, a clergy member, your pediatrician, a school guidance counselor, and/or other parents in a similar situation. You may also find it useful to refer to books, Web sites and support groups such as those listed in this resource guide.
Jump In: You can postpone talking with your children until you feel prepared, but it probably is best not to put that first conversation off for very long. Children can tell when something is amiss. If you don’t begin talking, they will worry. So take a deep breath and begin talking.
Follow Your Child’s Lead: Invite your children’s questions. Do your best to answer these questions while keeping it simple and trying not to get ahead of your children’s age, stage of development, ability to comprehend, and need to know.
Keep Talking: Illness is a process and, over time, opportunities will arise for ongoing discussions about living, illness, medical care, and dying. Use these opportunities to enable the members of your family to talk and reflect. Find ways to keep lines of communication open so that your children can ask their questions and express their feelings and concerns.
Find Adults to Serve as Allies: Invite them to be your eyes and ears, letting you know if they have concerns about your children’s adjustment to the illness. Your allies might include teachers, guidance counselors, school nurses, coaches, and the parents of your children’s friends.
Anticipate the Possibility of a Chronic Phase: Although it may be hard to believe it when you are first diagnosed with a life-threatening illness, you may live with your illness for a long time. With any luck, there may be times when your illness recedes into the background of your lives. Do your best to help your family enjoy these good times.
Anticipate Uncertainty: There may be many times when need to be able to say to your children, “I just don’t know.” Invite them to join you in your hopes for the future and help them go on living and loving despite the uncertainties.
