Illness is never an easy thing. Not only does the patient suffer, but so too does each member of the family. The toll can become especially pronounced when children are involved. Should they be told? Will they understand? Will they be able to cope? Below we’ll explore some guidelines that experts believe can help in navigating this delicate scenario.
A Few Caveats
Before we tackle specifics, we should always remember that parents know their child better than anyone else does. No child can fit “neatly” into a fixed bracket – each are unique. Their individual personality, temperament, coping style, health (mental and physical), and history (e.g. of trauma, losses, attachments) must be taken into account. Another important aspect to consider is the child’s chronological and developmental age (i.e. a youngster may function mentally, emotionally, or physically at a level younger or older than their age in years). (4) When in doubt, a parent can always consult with their child’s pediatrician or a mental health professional who specializes in working with youth. (4, 5)
General Considerations
Experts believe that keeping a parent’s illness hidden is usually not a good idea. (1, 2, 3, 4) Children can find out from other people or presume that the condition is more serious than it is. (4, 5) They also can fantasize that the situation is their fault. (1, 2, 4) Typically it’s best for the children to hear of the diagnosis from their own parent(s). (5) Set aside a time, free from distractions, to sit down with your children. (4, 5) Speak soothingly, but truthfully, without minimizing or exaggerating the seriousness of the situation. For example, “Dad got a bad headache at work today so he went to the hospital. He has something called an ‘aneurysm’ in his brain. The doctors are taking special pictures of his head so they can decide how best to help him.” (4, 5)
Ask them what questions they have, assuring them that no question is silly or wrong, and answer honestly. (4, 5) Encourage them to come back at any time as future questions arise and to express how they’re feeling. (2, 3, 4) Although it’s recommended to check in with them on a regular basis to see how they are coping, it’s also important for kids to have time to just be kids -- to play and engage in regular activities. (1, 3, 4) Constantly talking about the illness or inquiring about how they are feeling is not a good strategy. (5) It’s also not a good idea to try to hide your own feelings. (4, 5) By allowing your children to see you cry, or admitting to them that you are feeling sad, you can help normalize your kids’ emotions and convey to them that it’s okay to express their own pain. (5) This, of course, should be done within reason so the child does not get the impression that they need to be strong for their parents.
Despite this, some children will have a tendency to stuff their feelings. When this occurs, their grief, confusion, or anger will often reveal itself in other ways such as a change in: school grades, behavior, personality, sleep and/or appetite. (3, 4, 5) A developmental shift may also occur (regressing to how they used to act when younger or being overly mature in attempts to help out the family by taking on adult responsibilities). (1, 5) Be extra patient and loving with them, but at the same time continue to discipline as you usually would. This will bring familiarity and comfort. (3, 5)
Children need and thrive on routine. Try to keep the daily schedule as normal as possible, explaining to them necessary changes. For example, “Instead of Mommy picking you up from school, Grandpa will do this and will stay with you at our house until I come home from work.”; “Suzy’s mom will take you and Suzy to your piano lesson.” (1, 4, 5) Confirm for them that their daily necessities/comforts will be attended to (e.g. tell them who will help them with their homework, fix them breakfast and dinner, pack their lunches, put them to bed at night). (3, 4) If they are old enough, get their input on preferences, and try to keep the new helpers as consistent as possible. (5) It is also usually best to inform the school and the parents of your child’s friends about your family’s circumstances. (5)
Coping Strategies Based on Developmental Stage
INFANTS TO TODDLERS: Believe it or not, even babies can perceive when something is “off” in the family. Experts at the Cleveland Clinic encourage the patient’s loved ones to maintain the youngster’s routine as much as possible and to create ways in which the child can still sense their hospitalized parent’s presence (e.g. hear the parent’s voice on the phone or via pre-existing audio/video recordings, display photos of the parent where the baby can see them, place items around the baby that smell like their parent, visit the parent in the hospital if appropriate). (1)
PRESCHOOL TO “AGE OF REASON”: At this stage children operate on a very concrete level, and do not yet understand abstract concepts such as death. (2) Keep the information you share very basic and clear-cut (e.g. “Mommy isn’t feeling well. She’s in the hospital so she can have the doctors and nurses close by.”). (4) Let them know there is nothing they did to cause this1, 2, and that they cannot “catch it”. (1, 4, 5) Substitute caregivers should be people your kids know and are comfortable with. Reinforce how much the patient loves and misses them.
AGE 8 TO PRETEEN: Children at this stage may worry a great deal about their parent’s condition, including whether their mom or dad will die. If this comes up, it’s important to address this concern. (2, 5) Experts say that it is better not to tell untruths to your children, but rather to admit when you do not have answers to some of their questions, and to acknowledge how upsetting it can be (for them and for you) when things are uncertain. (1, 2, 3, 4, 5) Do not burden kids at this stage with details or highly technical terms. (5) Allow them time to play, and if possible, give them choices about visiting at the hospital. (1)
TEENS: This stage requires a balancing act on the part of parents. The adolescent can comprehend more information, but it should be delivered in small amounts. (2) They can provide assistance with household chores and babysitting younger siblings, but they should not be over-laden. Teenagers have needs too, which must be attended to. Encourage them to talk about their feelings to a trustworthy adult. They should be included in family decision-making, but the final call is not theirs. They still need to be shepherded by parents and other adults. (5)
CONCLUSION
A plethora of information and support exists, both online and in local communities, which can be of tremendous help to children who are experiencing a serious illness in a loved one. The references listed below are excellent and very much worth a thorough reading.
Remember, don’t try to manage everything on your own. Reach out for help from relatives, neighbors, friends, pediatric experts, your church community, and your child’s school. And most importantly, validate your children’s reaction -- giving them as much love and time as you can.
References
Cleveland Clinic. “Talking to Children About a Loved One's Serious Illness: Toddlers and Pre-Schoolers”, my.ClevelandClinic.org.
Cosgrove, C. “How to Talk to Children When a Parent Is Ill”, May 1, 2000, www.webmd.com.
Mary Bridge Children’s. “How to talk to children about illness in the family”, www.marybridge.org.
McCarthy, C. “How to talk to children about the serious illness of a loved one”, January 14, 2020, www.health.harvard.edu.
Scottish Partnership for Palliative Care. “Talking to children about your condition”. May 5, 2022, https://www.nhsinform.scot/.
Dr. Nicole Best (“Nikki”) is a Clinical Psychologist and 3-time ruptured brain aneurysm survivor. She earned her Doctorate in Psychology (PsyD) from Wright State University School of Professional Psychology, and completed a Post-Doctoral Fellowship at The Ohio State University Medical Center, Dept. of Physical Medicine & Rehabilitation, Division of Rehabilitation Psychology. Thereafter, she worked for almost 14 years in the VA Healthcare System before leaving on Disability after her 3rd subarachnoid hemorrhage. She has extensive experience performing psychotherapy and neuropsychological and decisional capacity evaluations with patients suffering from a wide range of medical conditions, including dementia, traumatic brain injury, stroke, and terminal illness.