Communication with Children about Life Threatening Conditions
One of the most daunting challenges is to tell a child that they or their parent has a life threatening condition. Our work focusses on developing evidence based guidelines to empower healthcare professionals, parents and children to navigate these emotionally difficult conversations.
This is not an uncommon scenario for healthcare professionals and parents, with millions of children and parents living globally with a life threatening condition (LTC).
Sensitive and developmentally appropriate communication matters enormously to children and their families regardless of their life circumstances. Parents are often uncertain about how, when and what to tell their children about the condition and are fearful of the impact on their family. There is evidence that children are often aware that something is seriously wrong and want honest information. Research suggests that the information children are given, and whether this is conveyed sensitively or poorly, has a significant impact on the longer term health and psychosocial wellbeing of both children and their parents, including symptoms of anxiety, depression, treatment adherence and family functioning.
The moment that the diagnosis is conveyed is often remembered vividly for many years and healthcare professionals play a key role in supporting and guiding parents and caregivers to communicate with their children about the diagnosis. The practical and emotional challenges of communicating with families are compounded by a lack of evidence-based guidelines for healthcare professionals, and without such guidelines this difficult and emotionally challenging responsibility is sometimes avoided, in part through concern of how the child and their family may react. To address this barrier, our recent Lancet series concludes with a communication framework, developed by our team of international experts, to guide healthcare professionals.
We have subsequently secured GCRF funding to conduct two focus group discussions in South Africa and Uganda The aim of these discussion groups is to develop the principles presented in the Lancet papers into a set of universally applicable and culturally appropriate guidelines for healthcare professionals to use in sub-Saharan Africa and beyond.
Our group is also running a research study to identify the challenges and barriers to communication across different types of healthcare settings, to inform the development of tailored training and support packages for healthcare professionals around communication.