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Learning modules

Activity 5: Communication with children and their families

Communication with children with a life-limiting condition

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 conditions report that communication difficulties with health professionals about death are amongst 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 condition 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 death and dying 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 death and dying are required for siblings and friends of the child with a life-limiting condition. 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 [1011]
  • being allowed to spend time with their sibling who is ill
  • receiving reassurance about their own health.

Thinking points


REFERENCES

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.