Dr Jennie Robertson, Clinical Psychologist, offers advice to parents and carers on how they can support the brothers and sisters of children living with cancer…
Siblings of children living with cancer can experience a range of emotions, such as: anxiety; anger; jealousy; guilt; grief; and feeling left out or alone. They can also continue to have a number of other emotions, including those that are not cancer-related.
Challenging emotions might be expressed in a number of ways, including: withdrawing; changing their personalities; changing their relationships with parents/carers; eating and talking less; attention-seeking behaviours; being afraid to leave parents/carers; recurring worries about their own health; body-based symptoms of distress (eg bed-wetting); difficulties at school; or trying to protect or comfort their parents/carers.
There is no “right” way to support siblings and no one can do everything all of the time but there are a number of strategies that you might find helpful:
• Communicate. Keep the lines of communication open. Acknowledge a sibling’s feelings, and give them plenty of chances to express them (including unflattering things about the unwell child). Be wary of minimising their concerns. Understand that children have different coping styles to adults and that even within the same family, siblings may have different emotional styles. Also bear in mind that siblings may wait until treatment is over before expressing their feelings and may not always want to talk about their emotions.
• Educate. Give age-appropriate information and remember that this is an ongoing process of repeating and updating plans and medical information as the child’s developmental capacities change. Consider educating the sibling’s teacher and classmates. Use a variety of teaching techniques (eg books, videos, verbal explanations and visual aids) and a variety of messengers (eg partners, medical staff).
• Normalise. Avoid differential treatment of your children whenever it is feasible, and keep routine in place where possible. Avoid casting the sibling into a premature parent role as a caretaker of the unwell child or other siblings. Ensure that the sibling has time to be together with the unwell child in order to normalise their relationship.
• Build a support network. Take advantage of other adults who offer to help. Encourage contact with other siblings to serve as a support network that can understand their situation. Take advantage of sibling programmes and camps.
• Create a balance. Try to create a balance between the focus on cancer and a distraction from it. Redirect attention to the sibling tactfully when others focus only on the unwell child. Try to include a gift for siblings every time the unwell child is given a present.
• Plan ahead. Predict absences of the unwell child and parents/carers whenever possible. When separations are necessary, leave siblings with the same caretaker as much as possible, a person he or she is comfortable with and trusts.
• Have 1:1 time. Spend as much time as you can with the sibling and ensure they get “individual” time. Let them know that you need and love them, and recognise their own strengths and accomplishments, not just what they do for the unwell child. When you cannot be home with siblings, write letters/notes, make videos, and talk to them by phone or text. If the sibling is young, consider bringing another adult to the hospital so that they have personal attention whilst the unwell child is being treated.
• Involve them in the child’s care. Include the sibling in the cancer community so that they get the opportunity to see where the child is treated and to explore medical experiences. Try to keep them involved in the process by giving them something non-threatening to do.
It might sound paradoxical but it is important to remember that there are also many positive possibilities for siblings of children living with cancer, including: maturity; compassion, empathy and awareness of people’s problems and differences; resilience; knowledge; a positive outlook; strengthened relationships with others; enhanced self-esteem; coping skills and problem-solving abilities; and temporary perks (eg free tickets to events!).
If you feel that you or your children might benefit from further support, please speak to your CHECT support worker.
Dr Jennie Robertson is a Clinical Psychologist working in the Retinoblastoma Service at the Royal London Hospital. This advice is adapted from Living with Childhood Cancer: A Practical Guide to Help Families Cope (Woznick & Goodheart, 2002).