Parenting Through Illness | Patient and Family Education | UC Davis Children Hospital

Depending on a child’s stage of development, children will understand and react to information about illness differently. Stressors and supportive strategies may vary as well. 

• Concept of illness
  • Not concerned with the “what, why and how” of illness
• Potential stress reactions
  • Changes in routine can cause distress or disruption to eating or sleeping patterns.
    
  • Changes in the household routine can increase separation anxiety. Feelings of increased distress or difficulty soothing may occur.
• How to help
  • Provide physical contact and reassuring attention to the child
    
  • Keep the schedule as consistent as possible

• Concept of illness
  • May not understand what the illness means but understands changes in the household.
    
  • Due to magical thinking at this age, they may feel that they caused the illness as an outcome of wrongdoing.
• Potential stress reactions
  • May show some regression and loss of recently gained skills
    
  • More frequent “meltdowns” or temper tantrums
    
  • Clingy behavior
    
  • Nightmares
• How to help
  • Name the illness (e.g., Cancer)
    
  • Re-enforce that they did not cause the illness and they cannot catch the illness.
    
  • Provide simple explanations and preparation for new events.
    
  • Keep schedule as consistent as possible.
    
  • Promote play and create a “big energy” part of your house for anger or frustration
    
  • Talk about feelings and encourage "self-expression" (art, dance and music)

• Concept of illness
  
  • Can understand more about an illness and how the illness may affect a person’s body.
• Potential stress reactions
  
  • Worry and sadness
  • Physical complaints
  • Not as cooperative
  • Issues at school and with friends
  • Withdrawal
• How to help
  
  • Maintain honest communication throughout illness and include more details for older school-aged child (pictures can be helpful)
  • Answer questions and know that repeated questioning is normal.
  • Provide reassurance about the child’s health.
  • Talk about feelings and encourage self-expression (art, dance, and music)
  • Maintain clear rules and boundaries
  • Promote play and create a “big energy” part of your house for anger or frustration.
  • Find peer support groups for your child.

• Concept of illness
  
  • Understands more details about the body and how an illness may affect the body.
  • Uses discussion as primary form of learning and processing, and begins thinking about illness, mortality and the meaning of life.
• Potential stress reactions
  
  • Worry and sadness
  • Defiance
  • Physical complaints
  • Big mood shifts (more sleeping and highly charged behavior)
  • Issues at school and with friends
  • Withdrawal
  • Testing limits
• How to help
  
  • Give complete information about the illness
  • Support peer group connection and having someone to talk to
  • Talk about feelings and encourage self-expression (art, dance, and music)
  • Encourage physical outlets
  • Expect that your teen may want to be out with friends even during important times during illness
  • Respect your teen’s behavior (hiding their feelings) as long as it doesn’t hurt them or others
  • Watch for any red flags (abusing drugs or alcohol) and seek help as appropriate.

Discussing illness and medical situations with children can be difficult and requires planning. As you navigate these conversations, aim to support a trusting relationship with your child through honest communication and supportive activities.

Communication

• Begin the conversation early and keep it going so children feel included throughout the medical situation. For example, “There is something important I’d like to talk with you about...”.
• Seek to understand what your child already knows about the situation. This will help you know where to begin. For example, “Can you tell me what you understand about __________ being in the hospital.”
• Keep the information honest and clear. Children process information at their own pace so introducing small pieces of the story at a time can be helpful. How much information is shared depends on the developmental age of the child.
  
  • Tell the story by sharing the main events that led to the illness. Name the illness and explain how the illness is not contagious (if this is the case). As well, it’s important to highlight how nothing they did caused the illness.
  • Explain the illness in a developmentally appropriate way. Using resources like kidshealth.org or the Simply Sayin’ application can help simplify big medical concepts.
  • Review general information about the illness – what will happen in the near future and if there will be any changes that could impact your child.

How to talk about treatment

The next conversation may be about the treatment plan – steps being taken to treat or manage the illness, possible side effects, and any changes related to energy level, mood, or appearance. Using pictures, especially with younger children, can be helpful to promote understanding and elicit more questions.

• Encourage children to ask questions and know that it is okay not to have all the answers. Find answers to their questions, or even better, help them write questions down for the medical team.
• Prepare yourself to talk about big questions. It is normal for children to ask if someone might die from a serious illness. Reflective questioning may be helpful (“Can you tell me why you are thinking about that?”). For a cancer diagnosis, you might say, “Some people do die from cancer, but most people get better.”
• If the illness is terminal, help your child understand what is happening now and what will happen in the near future. You can share your feelings (especially how hard it can be not to have all the answers) and talk about how you try to live in the moment (or insert a different coping strategy here).

Self-expression and coping

• Provide opportunities to share emotions. Model how you feel as this may help your children more easily express how they are feeling.
• Create a time each day or week to have family meetings. Share new information, feelings and other family business to keep routines as constant as possible.
• Help children play as an outlet for fun, to process, to cope, and to connect with friends. Keep in mind that children will turn to play especially after hearing hard information. This is normal and helps them cope and process at their own pace.
• Encourage your children to communicate with other support people as well. This may be helpful if the child is feeling worried that their question or feelings might upset the ill parent.

Seek out support

• Connect with others who are in a similar situation with children as it can be helpful to not feel as isolated in a challenging experience.
• Connect with your child’s school and others in your support network to help them understand what you are all coping with at home. This is important as what your family is coping with at home can greatly impact how a child may be doing in school or in extracurricular activities.

For parents:

• How to Help Children Through a Parent’s Serious Illness (by Kathleen McCue | General)
• Raising an Emotionally Healthy Child When a Parent is Sick (by McGraw Hill Professional | General)

To read with your children:

• When Someone Has a Very Serious Illness (by Marge Heegaard | Workbook)
• Butterfly Kisses and Wishes on Wings (by Ellen McVicker | Oncology)
• Talking with My Treehouse Friends About Cancer (by Peter R. Van Dernoot | Oncology)
• Breathing Makes it Better (by Christopher Willard | Coping)
• Someone You Know has MS (PDF) (by Martha King | Multiple Sclerosis)

For teens:

• When Your Parent Has Cancer: A guide for teens (PDF) (by National Cancer Institute | Oncology)
• My Parent has Cancer and it Really Sucks (by Marc Silver | Oncology)

Coping can look differently for each child. Building on interests and thinking about activity goals are two aspects to keep in mind. For example, if a child is having bigger emotions, we may think about movement activities to support this needed outlet. If a child is feeling extremely anxious, we may create a “worry doll/monster” to express, discuss, and “let go” of some of those feelings.

Partnering with a child life specialist so that activities can be geared for your child, family and situation is an option. Ideas listed below support ongoing communication and coping:

• Favorite place collage (all ages): Using materials that you can find around your home, including cut-outs from magazines, create a “favorite place” collage by gluing items on the page or by writing in favorite places, things, people, etc.
• Coping kit (adapt for all ages): Use a bag or box to put items the child can use to promote coping; the child can decorate the bag/box with ideas that are mood boosting; include mementos, favorite books, quotes, a stress ball, bubbles, and other items that bring a sense of calm.
• Feelings Mandala (11-18 year olds): The circle generally represents wholeness and through coloring the geometric shapes, can help provide a grounding activity. They can create a color key, choosing colors that match emotions they may be feeling. Color in the mandala according to their key. Mandalas to print here.

• Wish wall: Use a big poster board or sticky notes on a wall that you want to dedicate to being a “wish wall” in your home. Have each family member write (or draw for younger children) three wishes – a wish for the family, a wish for their friends, and a wish for the world. Make this wall a place that’s easily accessible for children to continue writing their wishes on.
• Family rock garden: Find rocks and use markers or paint pens to draw a picture or make a design that represents your family. Find a place in your home or yard to put all of the rocks together. This may even be a nice place to have your family communication meetings.