We all know that talking about children’s palliative care can be hard, and that people often struggle to understand what our work is all about and associate it solely with the medical ‘easing of suffering’. This emotional response is reinforced by the way high-profile cases – such as Charlie Gard’s and Alfie Evans’s stories in the UK – are reported in the media.
We know that the way people talk about these experiences can improve public understanding, building support for the best standard of care for children and their families. On Road Media – a communications charity helping people and the media create world-changing content – are supporting families who have direct experience of children’s palliative care and professionals working in this space.
They have been working with the True Colours Trust to investigate how people think and feel about children’s palliative care in the UK. They found that most people know little about it and tend to assume it’s:
- The functional and medical ‘easing of suffering’
- The last medical resort when all else fails
- Part of a wholly negative and impossibly sad situation.
These perceptions are very different from reality. They’re shaped by psychological defence mechanisms that prompt us to disengage from things that are hard to face. They’re also reinforced by the way stories are told in the media. These stories often prompt us to either look away or feel sad but powerless.
These perceptions of children’s palliative care matter and have real consequences. They affect families’ understanding and uptake of services. They influence how families and children are treated by other people. They shape how children’s palliative care is supported and funded.
Over the next three years, On Road Media will be looking at improving public perceptions and media reporting in the UK on these issues using an evidence based approach to strategic communications. They want their work to inspire better understanding of the experience’s families have – and wider support for services. They are rolling out a project that can help address the communication needs and challenges of the sector.
A friendly, actionable Communications Toolkit has been developed with the help of an expert Advisory Group to help communicators from the sector talk about children’s palliative care in a way that opens up conversations by inviting people in.
Tara Kerr-Elliott, a Nurse Specialist at Great Ormond Street Hospital and member of the project Advisory Group explains:
“Many of us who work in Children’s Palliative Care have known for a long time that there are misconceptions in how people understand the work that we do, and the children and families with whom we work. However, we have lacked the expertise, skills and knowledge to be able to improve this situation ourselves… On Road Media are clearly experts in communication and listen so attentively and sensitively to us. They are so committed to helping to ‘change hearts and minds.”
The project hopes to show a more rounded picture of the reality of life and work in children’s palliative care, through shining a light on the aspects of children’s palliative care that people don’t see and help them feel the value of the services.
They will support media professionals to develop stories that focus on the nuances of this work and the everyday moments and varied relationships that make for the best care experiences.These stories are currently rare and we need to hear, read and see more of them if we want to start shifting public conversation.
More information and links to On Road Media’s resources can be found on the website page of the children’s palliative care project.