Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. Beyond handling physical challenges and medical needs, you'll have to deal with the emotional needs your child may have and the emotional impact that the prolonged illness can have on the entire family. Luckily, this tough balancing act doesn't have to be done alone: support groups, social workers, and family friends often can lend a helping hand.
Explaining Long-Term Illness to a Child
Honest communication is crucial to helping a child adjust to a serious medical condition. It's important for a child to know that he or she is sick and will be getting lots of care. The hospital and the medicine may feel frightening, but they're part of helping your child feel better. As you explain the illness and its treatment, give clear and honest answers to all questions in a way your child can understand. It's also important to accurately explain and prepare your child for any treatments — and possible discomfort that might go with along with those treatments.
Avoid saying "This won't hurt" if the procedure is likely to be painful. Instead, be honest if a procedure may cause some discomfort, pain, pressure, or stinging, but then reassure your child that it will be temporary and that you'll be there to offer support while or after it's done. Many hospitals give parents the option to speak to their child about a long-term diagnosis alone, or with the doctor or the entire medical team (doctors, social workers, nurses, etc.) present. Your doctor or other medical professional probably can offer advice on how to talk to your child about the illness.
Tackling Tough Emotions
Your child will have many feelings about the changes affecting his or her body, and should be encouraged and given opportunities to express any feelings, concerns, and fears. Ask what your child is experiencing and listen to the answers before bringing up your own feelings or explanations. This kind of communication doesn't always have to be verbal. Music, drawing, or writing can often help kids living with a life-threatening disease express their emotions and escape through a fantasy world of their own design.
Kids may also need reminders that they're not responsible for the illness. It's common for them to fear that they brought their sickness on by something they thought, said, or did. Reassure your child that this is not the case, and explain in simple terms what caused the illness. (You may also want to reassure your other kids that nothing they said or did caused their sibling's illness.) For many questions, there won't be easy answers. And you can't always promise that everything is going to be fine. But you can help your child feel better by listening, saying it's OK and completely understandable to have those feelings, and explaining that you and your family will make him or her as comfortable as possible.
If a child asks "why me?" it's OK to offer an honest "I don't know." Explain that even though no one knows why the illness occurred, the doctors do have treatments for it (if that's the case). If your child says "it's not fair that I'm sick," acknowledge that your child is right. It's important for kids to know it's OK to feel angry about the illness. Your child may ask "am I going to die?" How you answer will depend on your child's age and maturity level. It's important to know, if possible, what specific fears or concerns your child has and to address them specifically. If it is reassuring to your child, you may refer to your religious, spiritual, and cultural beliefs about death. You might want to stay away from euphemisms for death such as "going to sleep." Saying that may cause children to fear going to sleep. Regardless of their age, it's important for kids to know that there are people who love them and will be there for them, and that they'll be kept comfortable.
Just like any adult, a child will need time to adjust to the diagnosis and the physical changes and is likely to feel sad, depressed, angry, afraid, or even to deny that they are sick. Think about getting professional counseling if you see signs that these feelings are interfering with daily function, or your child seems withdrawn, depressed, and shows radical changes in eating and sleeping habits unrelated to the physical illness.