When you make the important decision to receive home health care for a loved one with a terminal or chronic illness, you will need to plan how you inform other members of the family. If there are children in the home, that communication can be tricky to navigate. Children are perceptive and will sense that emotions are running high.
Hiding the medical condition from your children may seem tempting, but it is rarely a good idea. When a family member or close friend has a serious medical condition, there will be an undercurrent of stress and children will sense it. The best advice is to explain what is happening in age-appropriate terms. A clear explanation will prevent a child’s imagination from running wild and provide you with a view into the child’s concerns.
Tips for Telling Children:
Including your children helps them understand the situation and anticipate upcoming changes. Set aside a time when you know you will not be interrupted, and when your children are more likely to be focused and calm. After dinner and a bath, for example, could provide the right setting.
- Be Honest: Use age-appropriate language to explain the illness and how this will affect your loved one, as well as your family. There are many children’s books that both inform and comfort children, making them a great resource. Don’t be afraid to discuss any uncertainty about the illness if your child is older; this will help your child understand the scope of the situation.
- Be Specific: Call the illness by its name and discuss any treatment and effects of the illness in detail. If your loved one will be receiving home health care, explain the home health care process and any medical equipment that will be used and why, such as, an IV provides nutrients and medicine.
- Be Open: Don’t be afraid to show your emotions when you tell your children about the situation. Explain it’s okay to feel nervous, scared, or whatever emotion they may be experiencing. Showing your true feelings and encouraging them to do the same lets them know that they do not have to be afraid to talk about how they are feeling.
- Be Inviting: After you have explained the situation, invite your child to ask questions. Certain children may need time to process the information before they can ask questions. If that is the case, don’t pressure your child to ask questions; rather offer to answer questions whenever they are ready to ask them.
- Be Reassuring: Remind your child that you will provide regular updates on your loved one’s condition.
How Different Ages May React:
According to the American Academy of Pediatrics, when you tell your children about a loved one’s illness, reactions may differ depending on your child’s age. Understanding how your child may react is important so you can tailor the discussion. Children may feel a range of emotions from guilt, anger, and resentment to worry, fear, and anxiety.
Children between the ages of 3 and 6 may think they did or said something to cause the illness. It is important to assure them that words and actions cannot influence someone’s health and emphasize they are not being punished. They also may be concerned that the condition is contagious. Stress that this illness is different from a cold or the flu and is not contagious. It is not uncommon for children to wet the bed or regress to an earlier developmental stage. For example, a child who had stopped thumb-sucking may revert to the habit.
Children ages 7-12 may display more emotional and behavioral responses. They might behave poorly in school and have an increase in reported problems. It is also common for children to act out at home and to seem clingier. This should be viewed as a call for attention. Don’t be alarmed if your child has nightmares.
Teens may experience a change in their mood, attitude, sleep, eating patterns, school work, and/or behavior. Some adolescents will shut down, withdrawing from family and friends. Others will act out by getting into fights, not doing their homework, or participating in other rebellious acts. Another common reaction is for teens to try and be the perfect child in an effort to compensate for the other stressors occurring.
How to Help:
Whether or not your children are showing changes in emotional and/or behavioral responses, there are important steps you can take to support your child(ren) during this period.
- Stick to normalcy: Maintain rules and routines as much as possible. For example, don’t feel guilty about punishing your child for disobeying a rule. Having structure helps children know what to expect and makes them feel safe. Although it may be difficult when one of your children has a chronic or terminal illness, try your best to treat your children as equal and “normal” as possible.
- Include your children: Consider having your children help with the caretaking process of your loved one. For example, invite them to a doctor’s appointment or therapy appointment. Including your kids will help them feel important and enhance their understanding of the process and diagnosis of your loved one, which will allow them to cope better. When involving your children in the caregiving process, be sure not to overburden them with responsibility before they are ready.
- Communicate: Continue to check in with your children about how they are feeling. Whether you discuss your loved one’s illness, or what is generally happening in your child’s life, continuously checking in will help your children recognize that you are there for them and can be trusted with their thoughts, feelings, and needs.
- Stay active and have fun: Try to find hobbies that everyone can participate in, including your sick loved one. Scrapbooking, arts and crafts, and other fun activities bring the family together and help them feel like nothing has changed.
- Make time: It’s understandable that you may be completely consumed with caring for your loved one. However, it is crucial that you take time for your non-diagnosed children to help them know and feel that they are important. Whether you take an hour to help them with their homework, or take them to the movies, one-on-one time will assure them that they are not forgotten.
- Find support: Ensure your children have trusted adults with whom they feel comfortable talking. It may be useful to have your children speak to a therapist or counselor, or attend a support group for children in similar situations. The Children’s Hospital of New Jersey and the Children’s Hospital of Philadelphia have great options for pediatric support services. Providing different outlets for your children to discuss the situation and their feelings is essential for helping them cope.
Need More Help?
If you still feel stuck and unsure about how to discuss this difficult topic with your children, reach out to your local hospital’s palliative care teams, also known as pediatric advanced care (PAC) teams. These teams are made up of pediatric psychiatrists and licensed clinical social workers who help families deal with grief and caring for a chronically ill loved one. The child-life specialists are also great assets of hospitals, trained to discuss and explain illnesses with children, using props and visual aids.