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Educating your community of family and friends
Sharing one's experience on childhood cancer with their community can raise awareness and build understanding, and gather emotional or practical support. However, it is equally important to do so in a way that protects the child’s privacy and the family’s emotional wellbeing.
Practical ways parents or caregivers can cope:
Bréne Brown says in her book ‘Dare to Lead’ that clear communication is kind. You will be kind to your child if you explain the disease and the treatment in an age-appropriate style and not by sharing unexpected expectations. Be open, truthful and give the correct information. Take the guidance from professionals such as the doctor, social worker, play therapist, counsellor or psychologist.
You don’t protect the siblings by hiding information from them. Give siblings clear and correct information, without overwhelming or frightening them. Make them part of the process.
This is also a new experience for the extended family, friends and community and they may not know how to help you. Tell them what your needs are and involve them without losing your family’s privacy. If you are comfortable, you can name the type of cancer, describe briefly what is happening, the expected timeline and how you appreciate support. Avoid giving detailed medical reports, negative details and photos that reveal privileged information and or could frighten people – especially other children. You don’t have to share anything with which you are not comfortable.
If you feel ready, at some point you might want to use small groups or in-person conversations to educate communities and help others understand that your child still wants to be treated like any other. Sharing updates on social media could be used to share highlights, milestones, gratitude and for raising awareness messages. Keep the tone hopeful, factual, and respectful of your child’s dignity and use photos only with your child’s permission.
Below is a selection of resources that might be useful in communication with your child, their siblings, and with the family and community.
Communication with the child diagnosed with cancer:
Beryl Lin MD, et.al. 2019. Communication during childhood cancer: Systematic review of patient perspectives. Journal of American Cancer Society. First published: 10 December 2019
Du, Yiran BSC, et.al. 2024. Parents’ Experiences of Communicating With Children About Their Diagnosis of Nonterminal Cancer and Its Related Issues. A Systematic Review of Qualitative Studies.
Communication with the siblings when a child is diagnosed with cancer:
Yang, Hui-Chuan MSN, RN, et.al. June 2016. A Systematic Review of the Experiences of Siblings of Children With Cancer.
Children’s Healthcare of Atlanta. (n.d.). How to Explain Your Child’s Cancer Diagnosis.
Communication with the family and community when a child is diagnosed with cancer:
National Cancer Institute. (n.d.). Support for Families: Childhood Cancer.
CureSearch for Children’s Cancer. (n.d.). Community Help: When a Family Has a Child with Cancer.
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