The Dougy Center peer grief support groups

Explaining that someone has a life-limiting illness to a child or teenager can feel overwhelming and daunting. These tips may help you have that hard conversation and know better how to support your child during the challenges of living with a family member who has an advanced serious illness.

Begin the Conversation. Giving children difficult news is not an easy task, though your child will likely have already sensed that something has shifted within the family. Knowing that it will painful for a child to hear that a pparent or other family member has an illness that they may ultimately  die from often leads caregivers to wait for the "right" time to share challenging, life-altering news. However, rarely is there a "perfect time" to have these conversations with children. Waiting can lead to hurtful edxchanges that provide too little information and that comes too late in the illness for children to best cope and be included in the experience. The "perfect time" then, is the one that is created by you which leaves ample space for questions, reactions, and clarification. 

Use open, honest, and clear communication. Be honest and give clearaccurate information. Euphemisms like " not getting better", "won't be her much longer", or "passing on" can be confusing. Use the words "will die from" or "dying" when speaking to children and teens. If the only thing a child has been told is that the family member is "sick", they can become fearful or anxious about being sick wuith a cold or a flu. Name the disease. Young children need basic, concrete information regarding the illness, what will happen in the immediate future, and specifics about how their care and routine will be maintained. Adolescents and teens appreciate having more detailed information, especially as the family member's health declines. Being open in your communicationmodels for your children their ability to also be open and creates a level of trust with your child as they realize you will tell them the truth, even when it is really hard.   

Validate feelings and thoughts. It is important to listen to a child's responses without interrupting or minimizing fears. Validate the experience your child is sharing with you. Tell them that is normal to have many different feelings and  thoughts when someone in the family has an advanced serious illness. Children often worry that they can catch the disease, or that they either caused or in some way contributed to their family members lifelimiting illness. Reassure your child by being clear that their family member's illness is not contagious nor did they cause it. An adult can also validate the experience of a child by sharing similar feelings/thoughts, affirmaing that each reaction is normal, and giving them permission to express those feelings and thoughts.

Communicate often. Make time to have check-ins with your child. Use this time to inform your child when there is new information regarding the illness, treatment and procedures, changes in appearance or functioning of the person, or changes in routines. Ask your child if there are questions, concerns, or thoughts they would be willing to share with you. Even if there is no update, just carving out the time to share openly will reaffirm the message that you care. Communicating often with your child will build trust and help prepare for what is ahead. 

Model being okay with not knowing. Be honest if you don’t have an answer. It’s okay to not know. Appreciate your child’s question then assure them that you will tell them if and when you have an answer. Validate that it’s important to ask questions even when no answers are to be had. Much in life is unknown to us and that is certainly true when a family member is living with a life-limiting illness. Being able to ask questions and be patient in the unknown is an important life skill. Provide structure and routine. Life is constantly changing and often seems very unstable when a family member has an advanced serious illness. Providing structure with flexibility will help a child regain some sense of safety and control. Predictable morning and night time routines provide consistent bookends that will support your child in starting and ending their day. Additional important routines to consider are consistent childcare when you’re unavailable, planned time-limited hospital visits, continued participation in school/sports activities, and spending time with friends.

Provide time to be a kid/teen. It’s important for your child to spend time with and play with their peers. This invaluable time provides your child some normalcy, a physical outlet, social connection and can be a supportive coping strategy when your child is overwhelmed with all the other changes that are occurring at this time. Kid/teen time gives your child a brief but much needed reprieve from the worries and burdens they are carrying.

Advocate for your child. Inform your child’s teacher or school counselor about what is happening at home, how your child has been responding, and any fears or anxieties your child has that may be expressed at school. Many teachers and school counselors have little if any training on supporting grieving kids. It may be helpful to provide school staff with literature and resources so they can best support your child. Look to your palliative and hospice care staff, child’s pediatrician, hospital social workers, and support organizations like The Dougy Center for helpful information to give to your child’s school.