Typical Questions From Siblings of Ill Children

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brauntuckMichelle Brauntuch is M.S., CCLS. Certified Child Life Specialist, Englewood Hospital and Medical Center, Englewood, N.J.   

The following are some questions that siblings may ask and some answers you may use as a guideline when talking to them about the hospitalization.  Again, remember to keep the children’s age and developmental level in mind when answering them. When questions are asked, you may first want to ask the child what they think the answers to their questions are (ex:  “Why do you think he’s in the hospital”, “How do you think he got sick”), clear up any misconceptions they have, as well as provide more information.  

 

1. Why does “Michael” have to be in the hospital? You can say: “Michael has to be in the hospital because he is sick. The hospital has special medicine and equipment, and there are things that the nurses and doctors can do to help him get better faster than we could at home.”  (Remind them that this is a different kind of “sick” that when they are sick.)  If there is surgery, you may say “Michael will have an operation to fix _________, that is giving him trouble.  An operation is when the doctor fixes something in your body that is giving you trouble or sometimes they take something out of your body that isn’t working well.  People are born with parts of their bodies that they don’t need, like your appendix, and doctors take them out when they give you trouble and you can live just fine without them.”

2. When is “Michael” coming home? You can say: “Michael will come home as soon as he is well enough.  The nurses and doctors will do every thing they possibly can to make him feel better and come home as soon as possible.”

3. Is “Michael” going to die? (The family may have had an experience where a relative or acquaintance went to the hospital and died, so they may associate hospitalization with death.) If the patient is terminally ill, you may want to prepare the children for this.  For example: “ The nurses and doctors will do everything they possibly can to help Michael feel better and come home.  We all hope he’ll be able to come home.”  It is important to be receptive to the children’s feelings at this time and encourage them to let you know what they are feeling and thinking both now and later on. There are many books available on explaining death and dying to children of all ages that you may find helpful. If the patient is not terminally ill, reassure the children that the hospital staff is helping the patient to feel better and then focus on what will happen when the patient comes home again.

4. Will I have to go to the hospital? If the children have no foreseeable problem, let them know that when they are “sick”, it is different than the patient’s illness, and that they don’t have to go to the hospital.  Tell them that if someday they have a problem that needs the special help from doctors and nurses or the special medicine or equipment, then they may go to the hospital, too.  Reinforce that it they need to go to the hospital, you will be there with them also.

5. Will I catch it? Explain that the illness is not contagious (as long as that is true).  Again, emphasize that this is a different kind of “sickness” than when they get sick (unless it is a hereditary illness).  Then let them know that you will be there for them if they ever have to be hospitalized.

6. What will they do to “Michael” in the hospital? You can say : “The doctors and nurses will do everything they possibly can to make Michael feel better and get well as fast as possible.  They may give him medicine, do a special test or take some special pictures to help them know what is going on inside his body and to help Michael get well the fastest”. Siblings may also be concerned with practical things like food, clothing, sleeping arrangements, friends, etc.  Let them know how these things are provided for both the patient and yourself  (ex: “Michael gets his meals on a tray in his room and Dad and I go to the cafeteria to eat”).

7. Why do you (the parent) have to go to the hospital? You can say: “There may be things that are very strange or may hurt or be scary for Michael, and I want to be there to help him feel more comfortable.  I would want to be there if this was happening to you, too.  The doctors and nurses aren’t trying to be mean to Michael.  There are just things that need to be done to help them understand what is going on in his body and to help him get better the fastest.  I will miss you when I’m not with you and I think you may be missing me and I wish I could be with you.  You may be feeling scared or sad or even mad now, and those feelings are okay.  I understand.  Let’s plan something special for us to do together when I get home and maybe we can talk more about these feelings and help you feel better.”

8. Do you love “Michael” more than me? You can say: “I love you both. Michael needs some special attention from me right now.  And when you need some special attention, I want to be able to be with you, too.  I know you may be having a lot of different feelings now.  What kinds of things might we do together to help you understand and feel better?”

9. Who will take care of me while you are gone? You can say: “I will make sure someone will always take care of you while I can’t be with you.”  Give specific examples such as “During the day you will be at school and your teacher will be there for you. Then you’ll be playing at your friend’s house and his mom will be there if you need anything.  I will be thinking of you and missing you when I can’t be there.” Be sure to let the children know if there are upcoming changes in routine.  You may even want to make up a special calendar or daily schedule showing the children where they will be on each day and at what time.  If possible, give the children a special list of telephone numbers, including emergency numbers, the number of the hospital room and/or where you can be reached, and numbers of friends and relatives they can call if they need help or are feeling lonely or upset. Friends and relatives may have misconceptions or fears about the hospitalization and may ask your children questions.  This may be upsetting to the children, especially when they don’t understand everything.  By discussing the hospitalization with your children, you help them with talking to others about it. After the patient comes home, continue to let the sibling participate in any home care that may be necessary.  Spend some special time alone with them even after you have returned home.

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Important Points to Remember:

  • Siblings need help to make sense of the changes which occur in their world when a family member is hospitalized.
  • Open communication provides an environment free enough for children to express concerns and questions.
  • “Protecting” a child from knowledge creates anxiety.  Children know about what is happening – they sense it.
  • Without correct information, children make up their own explanations for changing and frightening events.  The reality is never as frightening as the ideas children invent to explain things to themselves.
  • The unknown can be more traumatic to children than the truth.

Crisis Communication

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taffelDr. Ron Taffel is known as one of the most captivating and practical child-rearing experts in the country.   He is the author of two best-selling books, Parenting by Heart: How to be in Charge, Stay Connected and Instill Your Values- When it Feels Like You’ve Got 15 Minutes a Day (Addison Wesley) and Why Parents Disagree: How Women and Men Parent Differently and How We Can Work Together (Morrow).  He was a frequent contributor to The Confident Parent, a monthly column that ran in McCalls Magazine from 1991 to 1996. He has also been featured on 20/20, The Today Show, CNN, and hundreds of radio shows.  Ron has a private practice in New York City and is the Founder of The Family Therapy Division at The Institute for Contemporary Psychotherapy.  He is married and has two children.

Often when a child becomes suddenly ill, or when there is a significant trauma in his life, or his medical condition changes, parents put additional pressure on themselves to communicate perfectly.  The following is an article with success strategies to help you share important news with children.

Don’t feel pressured to communicate perfectly. With children there’s rarely one “make or break” conversation.  Understand that many mini-discussions will occur.  Any mistake you’ve made can be talked about again.  Even when it comes to highly upsetting events, there are almost always second chances to talk things over. As you approach your child with new distressing information, try to be direct and kind.  If there are two parents, rely on the parent who has the strength to take the lead in the conversation.  If you are a single parent, ask the doctor or child life professional to answer questions that you have prior to talking to your child.

Know and respect your child’s communication style. This includes the time of day he/she usually talks, whether a lot of questions help or hinder, and activities during which he/she opens up.

Kids talk in the middle of doing other activities. This fact of communication does not change, even during a crisis.  So remember, kids open up while in “parallel position” to parents.  Some examples are walking to school, bath time and bedtime.

Protect these moments. Create or stick to as many “talking rituals” as possible and your child will naturally open up even about difficult matters.

Don’t assume. During crises, adults can’t help but interpret what kids feel.  More often than not, our guesses don’t hit the mark, and kids can become more reluctant to talk.  So try to keep an open attitude. As part of not assuming, stick to the questions your child asks.  Try not to offer one fact more than a child brings up.  Remember, kids can feel easily overwhelmed and far more anxious by too much information.  Let your child lead.

Try not to pounce. During tough times parents want so badly to communicate that we tend to drop everything when a child seems ready to talk.  Unfortunately, most kids feel pressure when we’re over-eager and they end up clamming up.  Have faith in your child’s ability to gradually open up. In summary, if you:

  • Let your child lead
  • Are patient
  • Protect talking rituals
  • Respect your child’s communication style
  • Remember that mini-discussions have the power to heal
  • Understand that mistakes can almost always be mended

… then you will keep the lines of communications open, even during the most challenging times.

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Making Hope Happen with
Dr. Shane Lopez

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Hope matters. The author of Making Hope Happen: Create the Future You Want for Yourself and Others shares important tools.

Just because you may be grappling with serious illness in your family, you still can have HOPE.  How do some people deal with and bounce back from setbacks? Why do they lead happier and healthier lives? It’s because they have hope. So, what exactly is hope and how can you develop it, too? Using discoveries from the largest study of hopeful people ever conducted, world-renowned expert on the psychology of hope, Shane J. Lopez, Ph.D.,  shares strategies for building a high-hope mindset. He tells uplifting stories of real people who are Making Hope Happen in their lives. The message is clear: Hope matters. Hope is a choice. Hope can be learned. Hope is contagious.

Pointers for Visiting Hospitalized Children

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1) Make sure you call ahead and confirm that it is okay to visit on that date and time. You may even call a couple of hours before to make sure things have not changed with the hospital schedule. Also, understand that your visit may be interrupted by a doctor, nurse or procedure that needs to take place.

2) Be fully present during your visit, giving your attention and energy to the patient. We recommend that you take care of all your personal needs prior to the visit. For example, you should not use the patient’s restroom and you may want to make any phone calls prior to the visit so you can give all of yourself to the patient and his or her family.

3) Leave heavy bags and valuables in your car or at home as space is at a premium in hospital rooms and large items can get in the way and be a tripping hazard.

4) Don’t wear heavy perfume or cologne. Many patients are allergic and have lower resistance to odors and smells, even nice ones!

5) Wash or disinfect your hands at the hospital scrub station before you go into the room and also after leaving the room.

6) If you are bringing your child who is friends with the patient, anticipate that the initial hello may be awkward for both children, which is totally normal. You might want to have a conversation with your child prior to the visit to address any concerns or questions that they might have. You may first want to ask the child what their answers are to questions such as “Why do you think he’s in the hospital” or “How do you think he got sick”. In this way, you can provide accurate information and clear up any misconceptions they may have.

7) Bring a gift for the patient. It can be a card, book, magazine, stickers, poster or a memento that a child would like to keep in their room. It does not have to be expensive, just something to remind them that you care. Take note that some hospitals may not allow balloons, flowers or plants. If you are bringing food, make sure to ask about dietary restrictions and other hospital rules. Many children are on restricted diets (no candy or solid food).

8) Try to keep it upbeat. Patients and their families really appreciate and enjoy the distraction from illness, hospital routines and procedures.  You can also talk about the gift you brought or comment on something they have in the room (such as a teddy bear, poster, game, or photo), or discuss something that happened in the community.

9) Sometimes just being there is enough. Do not panic if there are times when you are not talking.  Do not feel that you have to over-compensate by talking every minute to fill in the silence.

10) Take your cues from the patient and do not overstay your welcome or tire the patient out. Parents frequently cannot leave their child’s room, even for short periods of time. Don’t be insulted if the parent cannot walk you to the elevator or spend time in the lounge talking with you.

11) Understand that the child may be drowsy from medication and their illness. The child may also feel self conscious — imagine how you’d feel if someone came to visit you and you were wearing your pajamas and had not taken a shower or washed your hair in a couple of days. Please do not personalize any lack of enthusiasm. There is a reason they are in the hospital (they are really ill or recovering from a procedure) and what you are seeing is the result of the illness and not a reflection on you.

12) Be supportive of parents (or caregivers). Often parents can’t leave the hospital room because the child might be afraid to stay alone. If you know the parents has a favorite food, offer to bring them a lunch or dinner. Hospital food can be expensive and gets boring after awhile. It would also be helpful to offer to stay with the child while parents take care of important errands, or even leave the patient’s room for a short time to make a personal phone call or take a walk.

An Opportunity for Healing

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This is the first of a series of three articles co-created by the CompassionLab and Soaringwords for children and adults grappling with serious illness.

The darker the night, the brighter the stars.

For centuries, people have taken comfort and joy as they gazed at the night sky and were able to recognize clusters of stars known as constellations.  Prior to the invention of global positioning devices, people actually relied on constellations in the night sky as a celestial navigation system.

In this article we suggest that there are constellations of compassion that can provide direction, clarity and comfort for ill children and their families as they navigate through a serious illness or pediatric hospitalization.  Compassion is being able to sense, feel and act, to alleviate another’s suffering.

Compassion is an innate quality we all possess. When we see individual constellations such as the North Star, the Big Dipper, Orion’s belt, or Sirius, the dog, we experience micro-moments of joy, the sense of seeing an old friend, something comforting and familiar.  We want you to think about constellations of compassion as an opportunity for healing.  Once your eyes have been trained to recognize constellations, it becomes easier to pick them out of the swirling mass of glittering stars punctuating the night sky.  In the same way, when patients and families learn how to recognize and use compassion, it serves as a global positioning system that can help you feel less isolated by coming closer to the effervescence and healing force of other people.

So here’s the invitation: Look up. Look out.

Once you start looking for constellations of compassion you will notice patterns of compassion everywhere. The best thing is that these shared micro-moments of compassion just take a moment to give or receive. Sometimes you are going to be the constellation or shining light for others. Simply by sharing a smile or a kind word you can become the North Star to someone who feels anchorless.

Other times, you will recognize patterns of compassion in others and this will brighten your spirits. For example, a woman who holds open a hospital elevator for you just when the doors are about to close on the large tray with hot beverages you are carrying. Or each day when the man who cleans the floors greets you with the warmest “good morning” and his kindness lights up your entire day.

Trust us, once you start noticing these constellations of compassion, you will begin to see and feel light emanating from people all around you, just like the countless stars in the sky. We believe that these Constellations of Compassion are like the invisible lines that we often don’t notice which connect us in meaningful ways to what’s important in life. We believe that if you look around you right now, whether you are in the hospital or grappling with serious chronic illness as part of your life or the life of someone you love, you can start to recognize patterns and shining lights all around you.

SoaringConstellations’ activity
Draw and write a Constellation of Compassion message for someone special. Click here to get started.

Soaringwords founder Lisa Buksbaum with Jane Dutton of CompassionLab. The CompassionLab is a group of organizational researchers who strive to create a new vision of organizations as sites for the development and expression of compassion. Their focus is on the expression of compassion in work and in the workplace, including emphasis on roles, routines, practices, relationships, teams, and structures that impact the experience of compassion in organizations.