This project is jointly funded by Sparks and charity partner Great Ormond Street Hospital Children’s Charity through the National Research Funding Call.
Parents or carers often, understandably, want to be able to care for their terminally ill child at home. Research has shown that being able to provide the right pain medicine at the right time stops unnecessary hospital admissions, this means that helping families and healthcare professionals to get this right will help ensure that a family’s wishes can be met. However, managing pain medication can be challenging and problematic for the carer and for local health care professionals – from understanding how much pain a child is in, to the best medication to give, it needs to be tailored to each child’s needs.
Professor Christina Liossi and her team from the University of Southampton want to work with carers and health care professionals to understand the practical and emotional problems they face when managing pain relief in these children. They want to use this information to develop a tool that will help educate and empower carers and healthcare professionals to feel confident in giving the best pain relief to children at the end of their life. Their aim is to make this tool as responsive as possible, meaning it can be tailored to an individual’s needs and updated as situations change. It will help carers need to check symptoms and decide which medicines to give and how well they are working.
With this tool, Professor Liossi hopes to improve the use of pain relief medicines and their safety in the home setting and to make carers feel confident that the medicines they give do make a difference, so lessening their worries. In the future they hope to show the value of the tool in a larger research study and collect proof for the best ways of giving medicines for pain relief in children – ensuring each child’s pain is managed and that parents and carers are empowered to make the decisions that are right for them and their families.
Supporting parents and carers to deliver pain management to terminally ill children at home
Researcher: Christina Liossi