Coping with a diagnosis

Many families experience a state of denial and grief as they process a new diagnosis. Grieving the loss of “the way things were” is a normal and healthy emotion. Eventually though, families will need to work together to accept the diagnosis and establish a “new normal.”

While parents may initially feel helpless, learning strategies to help themselves and their child cope can bring back a sense of empowerment and composure. Parents are encouraged to focus on immediate goals, including:

1. Establish the “new normal:” Provide structure and routine, and set limits. This means maintaining bedtime and mealtime routines, as well as household rules.
2. Listen and take notes: Parents can help tremendously just by listening. Your child is going to be confused, and may have a lot of questions. Encourage older children to ask their doctor questions during appointments. Younger children may be unable to fully express themselves, or might feel shy in front of their doctor, so try to write down questions they ask you beforehand to bring up with the doctor during their next appointment.
3. Seek support: Finding the right support network is critical to a parent’s health. The support of family and friends is very important, and many also find support through hospital groups and even online in blogs, chat rooms and forums. Many types of groups allow children to connect with peers and parents to communicate, console and ask questions to other parents facing the same challenges. This often helps relieve stress and provides a sounding board to parents. Never be afraid to ask your medical provider for help when seeking out these groups.

Parents may also struggle to understand what their child is feeling following a diagnosis and how to provide a loving, strong foundation for them. The level of understanding a child has regarding their diagnosis can vary widely depending on age and cognitive level. General guidelines by age include:

Infants:

• An infant will have minimal to no understanding of their illness. They may be aware something is different, such as separation from parents, pain or physical restriction.
• Developmentally, they are establishing trust and security at this age, so it is important for parents to be present as much as possible during hospitalizations and procedures.

Toddlers:

• Toddlers may understand they are sick, but not understand why. At this age, it is difficult for children to distinguish between real and make believe.
• A lack of understanding may even result in a child viewing being sick as a result of their misbehavior. Parents should provide reassurance that the illness is not a result of the child’s actions and continue to promote your child’s independence by providing reasonable choices.
• Strategies to help with coping at this age include providing distractions through games, coloring, movies, music or toys and using a doctor’s kit or children’s books about going to the doctor to help alleviate a child’s fears.

School-aged children:

• School-aged children are able to think more concretely. They are better able to understand their illness and the needed treatment, and may feel more upset about a loss of independence and effects on their peer relationships.
• Children are focused on social and peer acceptance, and missing school affects both their learning and social skills. It is important they continue participating in school and other activities to minimize the risk of developing school phobia or separation anxiety.
• Parents should inform their school-aged child about upcoming doctor’s visits, procedures and hospitalizations up to one week ahead of time and allow the child to ask questions of both parents and the medical team.
• Encourage your child to keep in touch with close friends and relatives with phone calls, Facetime, emails, letters, etc., while you keep in touch with their teachers to inform them of anticipated absences and request modifications/accommodations when appropriate.

Adolescents:

• Self-image and maintaining an identity separate from family is very important to adolescents. At this age, children may resent needing a parent’s help, while some parents have to readjust to being the primary caregiver of their child.
• Teens can be at risk for non-compliance with medications and/or treatment. Parents can help their teen with decision-making, while providing them with some sense of independence. Teens should be included in discussions and decision-making, and should be allowed and encouraged to ask questions.
• They might enjoy writing in a journal, talking on the phone, listening to music or watching movies. They can benefit from maintaining friendships and school involvement as much as possible and even potentially from joining a support group for kids of the same age and/or similar diagnosis.

Overall, any serious medical diagnosis results in a period of uncertainty and adjustment for any family. My strongest message to parents is to remember there is no right or wrong way to cope and the things you and your child are feeling are normal. Your medical providers want to help you through this in any way they can.