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Managing difficult and sensitive conversations: Parents with life-threatening illness

Prof. Alan Stein

Friday, 31 May 2024

Introduction

Many adults diagnosed with a life-threatening condition have children living at home; they and their partners face the dual challenge of coping with the diagnosis while trying to maintain a parenting role. Parents are often uncertain about how, when, and what to tell their children about the condition, and are fearful of the effect on their family. There is evidence that children are often aware that something is seriously wrong and want honest information. Health-care professionals have a key role in supporting and guiding parents and caregivers to communicate with their children about the diagnosis. However, the practical and emotional challenges of communicating with families are compounded by a scarcity of evidence-based guidelines. This event will cover principles of sensitive and difficult conversations for health-care professionals, intended as practical guidance in the current absence of empirically derived guidelines.


The event will be equivalent to 2 hrs of CPD. 

Content

At the outset I will discuss why this issue is so important and the relatively high prevalence of a range of life-threatening conditions amongst parents with children living at home. We will then consider why healthcare professionals often don’t have these conversations and what the barriers are to healthcare professionals talking to patients about the importance of talking to their children about their condition, and giving them guidance about how to do it. One of the crucial issues to take account of is children’s understanding of separation, illness and death, as they develop. I will outline the key stages of these aspects of child development. We will then discuss some of the evidence around the benefits and difficulties of talking to children in this context, including talking about death.
We will then consider what parents and children report how they would like information to be given to them. This will be followed by discussion of the key principles of communication of life-threatening conditions to patients with children, and how healthcare professionals can be involved. I will also present two video animations demonstrating these principles, developed in response to Covid-19. Finally, we will discuss how we generalise these principles to other situations where difficult conversations have to take place.

Learning Objectives

1. Understanding the principles that guide conversations with patients and their families about life-threatening conditions, and specifically how to talk to children about this.
2. Learning how to use the principles to guide difficult conversations in other related areas of work.
3. Learning about children’s developmental understanding of separation, illness and death.

Training Modalities

Will include:
• Didactic content
• Q&A
• Video and infographics
• Group Discussion

Key References

Dalton L, Rapa E, Ziebland S, Rochat T, Kelly B, Hanington L, Bland R, Yousafzai A, Stein A, Betancourt T, Bluebond-Langner M. (2019) Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent. The Lancet. 16;393(10176):1164-76.

Stein A, Dalton L, Rapa E, Bluebond-Langner M, Hanington L, Stein KF, Ziebland S, Rochat T, Harrop E, Kelly B, Bland R (2019) Communication with children and adolescents about the diagnosis of their own life-threatening condition. The Lancet, 393(10176):1150-63

Dalton L, Rapa E, Stein A (2020). Protecting the psychological health of children through effective communication about COVID-19. The Lancet Child & Adolescent Health, 4 (5):346–7.

Rapa E, Dalton L, Stein A (2020) Talking to children about illness and death of a loved one during the COVID-19 pandemic. The Lancet Child & Adolescent Health, 1;4(8):560-2.

Kreicbergs U, Valdimarsdóttir U, Onelöv E, Henter JI, Steineck G. Talking about death with children who have severe malignant disease. New England Journal of Medicine. 2004 Sep 16;351(12):1175-86.

Bluebond-Langner M. The private worlds of dying children. Princeton University Press; 1978.

About the presenter

Professor Alan Stein is Head of the Child & Adolescent Psychiatry Research Group at the University of Oxford. His main area of research concerns the development of very young children and adolescents in the face of adversity. The ultimate aim of this work is to develop interventions to enhance children’s early development and support their families. The group is interested in a range of adversities which might potentially affect children’s development including parental physical illness (cancer and HIV), psychological disorders including depression, anxiety and eating disorders, as well as poverty and malnutrition.

His work has been published in leading scientific journals such as The Lancet, JAMA, and Nature, and has also been referenced in top media outlets like the BBC, The New York Times, and the Wall Street Journal.

Who should attend

Any healthcare professional working with patients who may have children, or professionals who work with children themselves.

Details coming soon

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