Children and families affected by life-limiting illness have many aspects of life that are beyond their control. However, the care that the child and family receives is something that can be controlled. It is important for the healthcare team to promote an empowering culture in conversations about care.
An empowering culture is one in which the family is enabled to have maximum control over the resources, information, decision-making and relationships that affect them. An empowering culture seeks to understand the uniqueness of each family within their social, spiritual and cultural context and demonstrates curiosity and humility in learning about the values and beliefs that are important to the family.
Such a culture respects the reality that each family has their own strengths, resources and information and is capable of making decisions and maintaining and contributing to relationships (including their relationships with care providers). Within this culture of empowerment, families are trusted to manage their own lives. They are not perceived as passive recipients of professional services but as competent and leading partners in their child’s palliative care.[1]
Communication with children
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. [1] Involving children as much as possible in discussions about their own care supports collaborative decision-making. Involving adolescents in their own care planning creates trust with health professionals.[2]
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. [3]
Strategies when talking to children include:
- Respect the parents’ views and expertise on how best to communicate with their child
- Use words and other communication methods that are understandable to the child. Check for understanding regularly and clarify as needed
- Use age-appropriate methods of communication such as drawings, books, action-based toys
- Validate the child’s questions (eg, That is an important question to ask)
- Be honest and maintain trust, be clear with responses to questions, especially if you do not know the answer to their question (eg, I’m not sure about that. Can I think about it?)
- Take time to be together and communicate, not just about their illness
- Be curious about what the child says and questions they ask (eg, Why do you want to know about…?)
- Allow children to have a break away from family and carers
- Be prepared to listen to and revisit conversations about care. [4-7]
Communication with family
Building rapport with a family in the early stages of care is crucial for effective ongoing support; part of this process is to understand and acknowledge the unique needs of each family. Parents have a primary role in decision-making, including decisions regarding the extent to which their child is involved in conversations about care planning. 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
- Allow time for the family to raise concerns and questions
- Family members can have strong emotional reactions; it is important to acknowledge and validate these
- Plan for future meetings or discussions to allow families time to go away and consider the conversation. [7-8]
Supporting siblings
Most siblings of children with life-limiting illness experience distress, but many do not share their thoughts and feelings. This may be because their parents are distracted or physically unavailable, or because they do not want to add to their parents’ difficulties. Siblings who are unable to express themselves adequately can develop behavioural problems such as attention seeking, school failure, developmental regression or physical symptoms resembling those of the sick child.[7]
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. Age appropriate conversations around dying and death are required for siblings and friends of the child with a life-limiting illness. [7-8]
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
- 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. The following table outlines age appropriate communication techniques for children in different age ranges:[3, 5, 9-12]
| Children up to 6 years |
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| Children between 6-12 years |
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| Children 12 years and up |
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. |
Thinking Points
- 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.
- 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?
- When supporting parents through their child’s illness, describe the key communication strategies that you would use in practice.
References
- Paediatric Palliative Care Australia and New Zealand. 2023. A Practical Guide to Palliative Care in Paediatrics.
- Wiener, L. et al, 2012. Allowing Adolescents and Young Adults to Plan Their End-of-Life Care. Pediatrics, 130(5), 897-905.
- CareSearch. 2021. Talking with children.
- Zwaanswijk, M. et al, 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.
- Cancer Council Australia. 2023. Talking to kids about cancer: A guide for people with cancer, their families and friends.
- Palliative Care Australia. 2018. Paediatric Addendum – Palliative Care Service Development Guidelines.
- Therapeutic Guidelines. 2023. Principles of Paediatric Palliative Care. Melbourne.
- Bluebond-Langner, M. et al, 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.
- Sisk, BA et al, 2016. Prognostic Disclosures to Children: A Historical Perspective. Pediatrics. 138(3): p. 10.1542/peds.2016-1278 e20161278.
- Muriel, AC et al, 2012. Measuring psychosocial distress and parenting concerns among adults with cancer: the Parenting Concerns Questionnaire.Cancer. 118(22): p. 5671-8.
- Meier, DE. 2018. The Human Connection of Palliative Care: Ten Steps for What To Say and Do.
- Rauch, P & Arnold, R. 2018. What Do I Tell the Children? Fast Facts and Concepts