Providing support to children
Parents diagnosed with life-limiting illnesses require support to communicate age-appropriate information with their children. Common concerns include:[1-5]
- The impact of the illness on the child’s routine
- Emotional wellbeing
- Understanding of the parent’s illness.
Often a parent’s biggest worry is what to say if the child asks if the parent is dying.[3, 5] Helping parents feel prepared to talk with children about their illness and possible death at any stage of illness has the potential to alleviate distress in both parents and children.[3, 5, 6]
Age appropriate communication
Children require communication strategies appropriate to their level of understanding and readiness.
It is recommended that you employ age-appropriate communication with children.[7, 8]
Memory-making is also an important activity for children at all ages. It also helps the person dying to feel that they are leaving a legacy. Examples of memory making include:
- Taking day trips or holidays
- Keeping a lock of hair
- Collating photographs, movies, scrapbooks
- Planting a tree or creating a garden
- Creating a memory box to store some of the dying persons special items in (ie, jewellery)
- Preparing letters/presents/video messages for the child to open after the person has died.
Across age groups, it is important to maintain regular routines and expectations to promote a sense of security for children. Children can also benefit from having family time that feels ‘normal’ and isn’t always focused on the parent’s illness. Parents often need help in recognising how reminders of illness affect their child’s life and in learning how to retain a sense of normality.[6, 9, 10]
Further information and resources to support communication with children about cancer have been developed by Cancer Council Australia.
Consider these points in relation to Michelle and her family.
Michelle is receiving her palliative chemotherapy in the day chemotherapy unit. Dawn Matthews, the cancer nurse coordinator, visits the unit to see how Michelle and Pete are going. Michelle and Pete raise concerns about telling their children that Michelle’s illness is deteriorating. Dawn works through these concerns with them and suggests strategies to help them address these concerns.
- Watch the video and answer the following questions:
- What are the main concerns that Michelle and Pete have about discussing Michelle’s prognosis with their children?
- What specific suggestions did Dawn provide to assist Michelle and Pete?
- What communication strategies did Dawn use to provide this advice?
- What additional strategies could Dawn use to improve this interaction?
- What are the main issues for children when a parent has a life-limiting illness?
- How will these concerns vary depending on the child’s age?
- How would you respond to a parent who is concerned about the effect of their illness on their child/ren?
- Bates, A.T. and J.A. Kearney, Understanding death with limited experience in life: dying children’s and adolescents’ understanding of their own terminal illness and death. Current opinion in supportive and palliative care, 2015. 9(1): p. 40-45.
- CareSearch. Communication. 2018 [cited 2018 12/07/2018]; Available from: https://www.caresearch.com.au/caresearch/tabid/3392/Default.aspx.
- Fearnley, R. and J.W. Boland, Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review. Palliative medicine, 2017. 31(3): p. 212-222.
- Fearnley, R., Supporting children when a parent has a life-threatening illness: the role of the community practitioner. Community Pract, 2012. 85(12): p. 22-5.
- Kopchak Sheehan, D., et al., Telling adolescents a parent is dying. Journal of palliative medicine, 2014. 17(5): p. 512-520.
- CareSearch. Talking With Children. 2018; Available from: https://www.caresearch.com.au/caresearch/ForPatientsandFamilies/LivingWithIllness/WhyIsCommunicationImportant/TalkingWithChildren/tabid/1139/Default.aspx.
- Sisk, B.A., et al., Prognostic Disclosures to Children: A Historical Perspective. Pediatrics, 2016. 138(3): p. 10.1542/peds.2016-1278 e20161278.
- Muriel, A.C., et al., Measuring psychosocial distress and parenting concerns among adults with cancer: the Parenting Concerns Questionnaire. Cancer, 2012. 118(22): p. 5671-8.
- Meier, D.E. The Human Connection of Palliative Care: Ten Steps for What To Say and Do. 2018; Available from: https://youtu.be/7kQ3PUyhmPQ.
- Rauch, P. and R. Arnold. What Do I Tell the Children? Fast Facts and Concepts 2018; Available from: https://www.mypcnow.org/blank-uftnj.
- Cancer Council Australia. Need support? Talking to kids about cancer 2015 March 2018]; Available from: https://www.cancercouncil.com.au/cancer-information/for-family-and-friends/talking-to-kids-about-cancer/support-and-information/.