Focus Topics

topic 3 | Activity 5: Communication with children and their families

Communication with children with a life-limiting illness

Like adults, children often have questions about their illness, care and dying. It is important that responses to questions are open, honest and age appropriate. Age appropriate communication with children and adolescents assists with acceptance of their condition, management of symptoms and preparation for dying. Involving adolescents in conversations and in their own care planning creates trust with health professionals. [1]

Age, individual developmental stages and possible neurological impairments need to be considered when communicating with children. Communication should be directed at the child though, depending on age, communication about care could also be through parents. Consider all family members who need to be involved when discussing aspects of the child’s care. [2]

Strategies when talking to children include:

  • Tailor communication to meet the child’s developmental stage [3]
  • Use age appropriate methods of communication such as drawings, books, action based toys [4]
  • Be honest and maintain trust, be clear with responses to questions
  • Take time to be together and communicate, not just about their illness
  • Allow children to have a break away from family and carers
  • Be prepared to listen to and revisit conversations about care. [5]

Communication with family

Parents of children with life-limiting illnesses report that communication difficulties with health professionals about death are among the most stressful situations experienced. [6] Conversations about care, choices and advanced planning are vital to ensure families are part of the plan of care. When talking with children with a life-limiting illness and their parents together, it can be difficult to assess each person’s level of understanding, as neither may want to openly acknowledge how sick the child may be. [7]

Specific considerations when talking to families around the time of death of a child include:

  • Plan the conversations in advance, taking into account timing and environment
  • Assess prior knowledge and what is needed to be discussed
  • Be clear, concise and empathetic when delivering information about the child’s condition
  • Allow silence and acknowledge emotions
  • Plan for future meetings or discussions to allow families time to go away and consider the conversation. [8]

Communication with siblings and friends

The level of understanding of dying and death for children with a life-limiting illness may be different to other children their age. This understanding develops from inclusion in conversations about their illness and management, and their experience of seeing other children they know die. [7]

Age appropriate conversations around dying and death are required for siblings and friends of the child with a life-limiting illness. Often parents and carers are dealing with their own grief. They may require assistance from members of the palliative care team to facilitate such discussions. [9]

Siblings can benefit from:

  • Being included in family conversations
  • Being provided with education about their sibling’s condition
  • Having time allocated to discuss concerns with health professionals
  • Connecting with support groups or other children who are dealing with similar circumstances
  • Being shown personal interest in them as individuals
  • Being encouraged to express emotions such as sadness and anger
  • Having these feelings and emotions normalised [10, 11]
  • Being allowed to spend time with their sibling who is ill
  • Receiving reassurance about their own health.

Age appropriate communication

It is recommended that you employ age-appropriate communication with children.[12, 13] The following table outlines age appropriate communication techniques for children in different age ranges:[14-19]

Across age groups, it is important to maintain regular routines and expectations to promote children’s sense of security. Children can also benefit from having family time that feels ‘normal’ and isn’t always focused on their 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.[17-19]

 

Table 2. Age appropriate communication techniques
Children up to 6 years
  • Younger children are egocentric
  • Reinforce that they are not being blamed for the illness
  • Reassure them that they will always be safe and cared for
  • Explore their understanding of the illness and/or death
  • Dispel guilt by correcting misconceptions and reassuring the child that nothing they did caused the illness or death, including their behaviour (eg, don’t tell them to ‘be good’ so that they can be well).
Children between 6-12 years
  • Children in this age group can be concerned that they won’t be accepted by their friends and peers and for some, being different for any reason can be distressing.
  • Children in this age group need:
    • Relevant information aimed specifically to their level of understanding
    • To maintain relationships with their peers
    • To continue to participate in affirming activities including sport, clubs or social activities
    • Ongoing opportunities to talk about comments from their peers and how these comments make them feel.
  • Provide a simple explanation of the diagnosis and treatment options
  • Dispel misconceptions regarding causes of illness or death, as well as contagion
  • Help put guilt and other concerns in perspective by thinking together about the entire relationship rather than only the recent past.
Children 12 years and up
  • Maintain social relationships
  • Access specific and relevant information about dying and death
  • Facilitate opportunities to talk openly about the illness with their parents
  • Provide information about the illness and treatment options
  • Dispel misconceptions regarding causes of illness or death, as well as contagion
  • Provide clear and accurate information about causes of death.

Remember that adolescents may seek information from other sources, such as the internet. Encourage them to check the accuracy of this information with their parents.
  1. Describe how communication strategies are similar and/or different for a child with a life-limiting illness who is 13-years-of-age compared to five-years-of-age, when assessing their understanding of palliative care, dying and death.
  2. List common euphemisms that might be used when speaking about someone who has died, such as ‘going to have a long sleep’. How might a young child misconstrue these terms?
  3. When supporting parents through their child’s illness, describe the key communication strategies that you would use in practice.
  1.  Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., and Pao, M. (2012). Allowing Adolescents and Young Adults to Plan Their End-of-Life Care. Pediatrics, 130(5), 897-905.
  2. CareSearch. Communicating with Health Professionals. (2011). Retrieved December 6, 2012, from: www.caresearch.com.au/caresearch/tabid/1107/Default.aspx.
  3. Zwaanswijk, M., Tates, K., van Dulmen, S., Hoogerbrugge, P.M., Kamps, W.A., Beishuizen, A., and Bensing, J.M. (2011). Communicating with child patients in pediatric oncology consultations: a vignette study on child patients’, parents’, and survivors’ communication preferences. Psycho-Oncology, 20(3), 269-277.
  4. Rollins, J.A. (2005). Tell me about it: drawing as a communication tool for children with cancer. Journal of Pediatric Oncology Nursing, 22(4), 203-221.
  5. Turner, J., Clavarino, A., Yates, P., Hargraves, M., Connors, V., and Hausmann, S. (2007). Development of a resource for parents with advanced cancer: What do parents want? Palliative and Supportive Care, 5(2), 135-145.
  6. Sandler, I. (2004). Parental grief and palliative care require attention.Pediatric and Adolescent Medicine, 158(6), 590-591.
  7. Bluebond-Langner, M., Belasco, J., and DeMesquita Wanda, M. (2010). “I want to live, until I don’t want to live anymore”: Involving children with life threatening and life-shortening illnesses in decision making about care and treatment. The Nursing Clinics of North America, 45(3), 329.
  8. Klick, J.C. and Hauer, J. (2010). Pediatric Palliative Care. Current Problems in Pediatric and Adolescent Health Care, 40(6), 120-151.
  9. Carlile, M. (2012). Understanding grief and bereavement in the palliative care setting. In M. O’Connor, S. Lee, & S.Aranda, (Eds) Palliative care nursing: A guide to practice, (pp. 271-289), Ascot Vale, VIC: Ausmed Publications.
  10. Abrams, M. (2009). The Well Sibling: Challenges and Possibilities.American Journal of Psychotherapy, 63(4), 305-17.
  11. Brown, E., Warr, B., and Smallman, A. (2007). Supporting the Child and the Family in Paediatric Palliative Care, London: Jessica Kingsley Publishers.
  12.  Sisk, B.A., et al., Prognostic Disclosures to Children: A Historical Perspective. Pediatrics, 2016. 138(3): p. 10.1542/peds.2016-1278 e20161278.
  13. 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.
  14. Moore, C., M. Pengelly, and P. Rauch, Communicating with children when a parent is dying, in Handbook of Communication in Oncology and Palliative Care, D. Kissane, B. Bultz, and P. Butow, Editors. 2010, OUP Oxford: Oxford.
  15. 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/
  16. Kopchak Sheehan, D., et al., Telling adolescents a parent is dying.Journal of palliative medicine, 2014. 17(5): p. 512-520.
  17. CareSearch. Talking With Children. 2018; Available from: https://bit.ly/2TRotYi
  18. Meier, D.E. The Human Connection of Palliative Care: Ten Steps for What To Say and Do. 2018; Available from: https://youtu.be/7kQ3PUyhmPQ.
  19. Rauch, P. and R. Arnold. What Do I Tell the Children? Fast Facts and Concepts 2018; Available from: https://www.mypcnow.org/blank-uftnj