So you just found out that your child has a major illness: you’re barely able to wrap your head around it- how do you now break the news to your child? Most caregivers are at a complete loss for words- I mean this was never one of the conversations you fantasized about having with your child when you found out that you were having a baby. Do you play it down or is absolute honesty the best method? What are the best words, sentences or allegories to use?
Talking to your Child based on Age
There is absolutely no easy answer to this- but the age of a child will primarily determine the appropriate language and communication methods to use. It also determines how much they will understand. Although children vary greatly based on their maturity level- there are generally 3 age categories to consider: 2-4 years old / 5-11 years old / 12-18 years old.
2-4 Years Old
General Understanding: Kids this age SHOW their feelings rather than express them in words. They don’t understand their illness, but will demonstrate distress by: bedwetting , thumb sucking, nightmares, tantrums , being Jumpy, clinging to parents.
1: Find out what your child believes about their illness/injury. You might really be surprised by what you hear and this gives you an appropriate starting point. Kids this age will often repeat back to you the exact terms you used to describe their illness to them: “booboo” or “germies in my tummy…”
2: Be mindful of your body language. Young children FEEL more than verbalize and can sense the feelings of their caregivers, especially when they are scared, angry or upset.
3: Call a disease by its name. Be honest and open using words that they can understand. Call the illness by its name (cancer, diabetes, etc.). Do not overwhelm them with information they may not understand. Again- they get their sense of security from you and mirror your feelings.
4: Encourage the child to ask questions to both you and their healthcare providers. Little ones may constantly ask “WHY?” Try to keep things as simple and clear as possible. How you frame their illness will shape their belief about it in their minds.
5: Involve your child in their care. Making younger children familiar with the medical equipment that will be regularly used during the course of their treatment can be very helpful. By familiarizing younger kids with these new objects, they are less likely to react every time they see them. Have them touch and play with the tubing, pulsox probe/ blood pressure cuff and thermometer. They can test out the thermometer and blood pressure machine on mom. Some kids can even help the nurse with IV flushes. The more familiar they are with the equipment- the less frightening it will be for them.
6. Other Concerns: Kids this age are the most afraid when they need to be separated from their parents for medical tests or procedures. You need to assure them that you will not abandon them at the hospital. This phrase repeated often helps: “Mama (or papa/ grandma, etc…) always comes back.”
General Understanding: Children at this age begin to understand the concept of illness as well as cause and effect, i.e. if I take this medicine, it will make me better. They also understand that healing can take place over time. However, they are very imaginative and will often “fill in the blanks”-based on only hearing or understanding a part of the conversation. Be sure to clear up any misunderstandings they may have.
1: Find out what your child believes about their illness/injury. You might really be surprised by what you hear and this gives you an appropriate starting point.Kids this age begin to understand what may have caused their illness and also what will help them get well. They employ both logical as well as magical thinking and may fantasize about the origin of an illness or injury.
Parents need to assure them that they were not the cause of their illness.
2: Be mindful of your body language. “The most important thing in communication is hearing what isn’t said.” Children this age will read your body language and quickly assess if your body language matches your words. When talking with your child, get down to your child’s eye level. This will help make them feel comfortable and secure.
3: Call a disease by its name. Be honest and open using words that they can understand. Call the illness by its name (cancer, diabetes, etc.). Children this age with understand the basic premise of their illness, but not the intricacies of it. They may not be able to handle a lot of information at once. It might be helpful to break it down to a few mini conversations, addressing only the things that are relevant at the time.
4: Encourage the child to ask questions to both you and their healthcare providers. Children this age might hear messages about their illness from other sources, such as school, TV, and the Internet. Try to encourage your child to share any details he or she learns with you. It will help if you can discuss it together, instead of having your child worry alone.
5: Involve your child in their care. Children this age can be very involved in their own care with adult supervision and guidance. The more responsible they are for their own care- the more in control they may feel. Simple instructions like this may help: “Your job is to put the thermometer under your tongue so the nurse can get your temperature.”
6. Other Concerns: Until about the age of 7, kids may have fears that they will live in the hospital forever. Tell your child that when treatment is finished, he or she can return home (if that is true). If you know how many more days your child will be in the hospital, you may share these details too.
12-18 Years Old
5-11 Years Old
General Understanding: Pre Teens and Teens understand their illness. In response, they may: act more grown up to cover their feelings and insecurities; withdraw completely; act out (intense anger, emotional outbursts, increased aggression, refusal to take meds, etc.)
1: Find out what your child believes about their illness/injury. Although preteens & teens understand their illness logically- they might attach blame to either themselves or their caregivers for their illness. They might erroneously think: “because I was bad- this happened to me.” Take the time to understand what’s going through their mind and assure them that what they are experiencing isn’t their or anyone else’s fault.
2: Be mindful of your body language. “The most important thing in communication is hearing what isn’t said.” Teens will read your body language and quickly assess if your body language matches your words.
3: Call a disease by its name. Keep in mind that a child this age will Google their illness almost immediately. Be specific with your child about their illness as conditions vary greatly (i.e. cancer: is it leukemia or sarcoma or brain a tumor?) If you aren’t specific, they will fill in the gaps themselves, possibly incorrectly. Being specific also helps to build trust with your child, helps him or her feel included in medical exchanges and decreases confusion.
4: Encourage the child to ask questions to both you and their healthcare providers. Be open and honest and encourage your child to ask questions. Answer questions honestly, even if this means you don’t know the answer and need to follow up later. Keep in mind that although teens and preteens can understand more complex subjects, this does not mean that they understand everything. Listen carefully and try to gage how your teen is interpreting their illness and treatment. Fill in gaps to correct any misunderstandings they may have.
5: Involve your child in their care. Preteens/teens understand their illness and would prefer to be included in discussion about their treatment options. They may be very sensitive to being sidelined in discussions that involve their health.
6. Other Concerns: Preteens and teens often have a unique set of concerns about their physical appearance and their need to fit in with others. They may worry about the physical side effects of their illness (i.e scars, hair loss, weight gain or loss, etc…) Talk honestly with your teen about such effects if applicable. Also, your teen has likely done his or her own online research. Encourage your child to discuss their finding/ feelings with their doctors and health care providers to clear up any questions they have.
Doc Ollie's Talking Dos & Don'ts
Talking to your child during treatment or recovery is essential to their emotional health as well as yours. Finding the right words can sometimes be a challenge, especially if there is uncertainty in the future. Here are some general tips from Doc. Ollie on what language to use and avoid.*
Don't say "just" as your child may feel that their feelings are being minimized. For example, don't say "it's just tape coming off your skin." Your child needs their pain to be acknowledged.
Try saying: "I know" instead, or "I know it sucks, but it will be over in a minute."
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