Each year 15,780 children are diagnosed with cancer. Breaking this down, approximately one in 285 children in the U.S. will be diagnosed by their 20th birthday. That’s 15,780 families affected. Often, we focus on the child with cancer — how is this child impacted by cancer? What treatment does the child need? What can we do to help make cancer diagnosis easier on this child?
But what about the loved one? How are loved ones, specifically the family, impacted by the illness? Almost a third of families report spending 40 hours each week on cancer care. This has a huge impact on the family dynamic. Each sibling’s life is significantly altered by this difficult situation.
When a child is diagnosed, everyone the child knows is affected, with the family affected to the greatest extent. Parents take the brunt of appointments, treatment, transportation and support. And this overall diagnosis changes the entire family’s way of life. Time is torn. Focus is torn. Stress over life events is torn. The focus shifts. Parents still must maintain every responsibility necessary as a parent with the addition of cancer treatment and keeping the diagnosed child healthy.
With the goal of fighting and beating the disease, our thoughts can easily become focused on solely the diagnosed child’s treatment and care. However, Sanford Health works hard to look broader. Health care has evolved to looking at the overall well-being of the whole person including family and personal life. Sanford offers an interdisciplinary team, which allows us to better prepare, educate and support the patient and the family from all angles.
Every moment spent fighting cancer, every moment in a hospital, clinic or receiving treatment is a moment away from the child’s natural environment. A healthy child misses three days of school per year; in comparison, a child with a chronic condition misses around 16 days per year, depending on the diagnosis.
During this time, developmental needs shift. Peer relationships, appearance and processing skills are all altered due to the condition. Each has an impact on the child’s development, including his or her self-esteem, confidence, ability to communicate and reasoning skills. And though these changes happen to the diagnosed child, siblings also can experience developmental changes and setbacks.
The academic effect
Just as the diagnosed child can experience fatigue, loss of motivation, indifference, attention difficulties and an inability to concentrate during school, so can siblings. Siblings may perform more poorly in school or have issues with focusing on homework as well as acting out, misbehaving or withdrawing. Others will act the opposite, going above and beyond or performing better.
The emotional impact on siblings
Siblings have significant emotional reactions after a cancer diagnosis. These can vary from child to child and shift from day to day. Whether we can observe these changes in verbal and body communication or not, often a sibling is experiencing a combination of emotions throughout the cancer journey.
From fearing the cause of the diagnosis to survivors’ guilt, siblings often feel guilty about the cancer diagnosis. This can include questions like, “What did I do to cause this?” “Why didn’t this happen to me?” or “Why my sibling and not me?”
Encourage your child by talking through this feeling. Explain the cancer diagnosis is not the sibling’s fault and the diagnosed child did not get cancer because of anything the sibling did, said or thought.
Due to the extensive hours of care needed for cancer, siblings can feel abandoned. Perhaps a school event had to be skipped due to a treatment or a friend’s parent has to help pick the sibling up from school every day, a change in routine can make a child feel alone.
Stick to your child’s routine to help alleviate this. School, after school and weekend routines should be as consistent as possible. Encourage each sibling to do activities he or she enjoys including school activities, sports and spending time with friends. Siblings should also keep in touch with the diagnosed child during hospital stays through text messaging, phone calls and letters.
Sadness and grief
When surrounded by illness and treatment, siblings can often feel sad, even on a good day. Anticipation of loss, missing a sibling during a prolonged hospital stay or bereavement if a sibling has passed away are common. Siblings may also miss normal family life before the diagnosis and be sad due to change in their lifestyle.
Reassure the sibling and continue to show your child he or she has support from family and friends.
Anger can be towards the self, others, classmates, even the diagnosed child. A sibling may be angry the diagnosed child is taking all of the parents’ time or a sibling can get mad about something completely irrelevant.
Parents can help by allowing the sibling to express anger in a safe and healthy way and by setting aside time for each child individually.
Anxiety and fear
Younger siblings can fear “catching” cancer or getting sick themselves. Siblings experience fear when the diagnosed child has an upcoming scan or test. Worry can occur due to not knowing, fear of the diagnosed sibling getting sick again or dying, and due to the diagnosed child experiencing pain.
Talk to each sibling about your own anxiety and fears, let him or her know these feelings happen and explain what you do to cope with your feelings.
Siblings can have developmental regression as well as struggles in school, with friends, at home or in life in general. Younger siblings may act like a baby or an older sibling may use baby language. Additionally, siblings may experience increased physical symptoms such as headache, bedwetting or trouble sleeping.
Parents can model good behavior, especially during stressful situations. Explain situations in age-appropriate details to help relieve some of this stress.
If a sibling continues to struggle, consider seeking outside help from a social worker, psychologist, health care provider or mental health professional.
Many siblings respond to a cancer diagnosis with compassion, love and care. Though negative changes can occur, parents often see more positive changes, from a stronger sibling bond to empathy and enhanced self-esteem. Families learn to come together during a crisis, strengthening the family relationship.
Helping siblings cope
Sanford Health understands the difficulty of coping with cancer. At the beginning of treatment, we create a plan of care that incorporates the entire family. Our child life specialists and psychosocial team partner with families to provide education, support and resources. During meetings with parents and siblings, we:
- Encourage open dialogue
- Discuss the importance of spending time with each child
- Assign home tasks
- Talk about possible school situations, such as questions from friends or teachers
The goal is to help parents and siblings communicate openly and build trust and a sense of belonging. We facilitate coping skills, increase understanding and awareness, and address personal, developmental and academic needs.
Support groups are available for siblings as well as online resources. The Teen Cancer Guide from the National Cancer Institute is a great resource for adolescent siblings.
Though it is impossible for parents to remove all of the negatives associated with a cancer diagnosis, there are many options available to minimize the effect on families. From diagnosis and treatment to remission and being cancer free, our team is there to be your advocate, your partner and your support.