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What is the problem?
What is the problem?
Each year 20,000 children become very ill or injured and need specialist care within a Paediatric Intensive Care Unit (PICU). Most children survive. However, these children and their families (parents and siblings) may experience problems after they have left the PICU. These can include physical (breathing, eating and drinking), functional (moving and concentration), and/or emotional problems (stress and fears) to themselves and their families (parents and siblings). These have the potential to affect health, place burdens on parents/carers, impact on education and social development.
However, we currently do not know which children and families experience problems, when the problems occur, and what causes them. Without this information, we are unsure how to help and support children and their families after PICU.
What have we done so far?
What have we done so far?
We have talked to children and their families that have been on PICU, health professionals, and researchers in the field who identify that this topic is a priority for clinical practice and research. Children and their families have said that they would like follow-up and support. Professionals and researchers have identified that there is a lack of research that clearly identifies what needs children and their families have, and when these should be addressed in their recovery pathway. We have also undertaken a national questionnaire of all PICUs to understand what support they currently offer to children and families after they leave PICU. And the result was that only two out of 22 PICUs provide follow-up to children and families after a PICU admission.
What are we going to do?
What are we going to do?
We want to understand the physical, functional, emotional and social consequences of being on PICU to children (aged 1 month-17 years), their parents and siblings, in the first-year after a PICU admission. We will conduct a study that will collect information from children, their parents and siblings, who have been admitted to PICU over a year to see if there are any changes over time. In addition, some families will take part in interviews in order to explore their care and support needs.
How are we going to do it?
How are we going to do it?
We want to follow up 300 children, their parents, and their siblings over the first year after they have left the PICU. We will collect information just before and then after the child leaves the PICU. Information will also be collected over the telephone or via the internet at 1 month, 3 months, 6 months, and 12 months after leaving the PICU. We will collect information about physical, functional, emotional and social health with methods that have been used successfully before in other research. In addition, at 3 and 9 months, we will invite 12 families to take part in face-to-face or telephone interviews to talk about their care needs. Data will be analysed to look at any trends or changes in this information over time.
What will we do with the results?
What will we do with the results?
At the end of this project we hope to have a better understanding of the health consequences of children, their parents and siblings in the first year following PICU and their experiences of care and support needs. This will provide information about anything that can be changed to improve negative consequences of being on a PICU. We will share our results with children and their families, national organisations, healthcare commissioners, policy makers and the international paediatric intensive care community to ensure that our results can be used to improve care for children and their families, leading to better health and well-being.
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