A collaboration of clinicians, academics and parents, led by Alder Hey, have created a useful guide for parents of neonates requiring medicines when they leave hospital. The guide will be available to parents across the UK and Ireland to help them administer medicines safely.
One in seven babies born in the UK receive neonatal care in a Neonatal Unit either because they are born prematurely, or are born full term but are sick and require extra care. Many of these babies return home still taking several medicines and this guide will help parents to reduce medication errors.
The guide, co-designed by researchers and parents of neonates, was a result of a two-year study called PADDINGToN (Parent co-Designed Drug Information for Parents and Guardians Taking Neonates Home). Academics and clinicians from the UK (Alder Hey Children’s NHS Foundation Trust, Liverpool Women’s NHS Foundation Trust, Wirral University Teaching Hospital, Leeds Teaching Hospital) and in Ireland (The Rotunda Hospital, Dublin and Royal College of Surgeons in Ireland) were part of the research team.
One parent who feels the new guide will be beneficial is Rachel whose baby, Hugo, was born prematurely. Rachel said “Hugo was born at 24 weeks which was 16 weeks premature. He had many of the complications that come with being born prematurely, including needing surgery at Alder Hey. This included both heart surgery and bowel surgery. We spent seven months in hospital altogether. The support from all of the hospitals we were involved with, Alder Hey, Saint Mary’s in Manchester, Wythenshawe Hospital, it was all fantastic. With their help, Hugo finally came home. This was such an exciting day, but also the start of a new journey, with looking after him now becoming our responsibility and with the eight medications as well as oxygen and specialist milk, we knew we had our work cut out for us. It is hard to take on board all of the things that you have to do for a baby coming out of medical care and any support that can be provided to parents is fantastic. It’s so exciting to be involved in designing the resources for the PADDINGToN study, which I have no doubt will help parents going forward. “
Dr Louise Bracken, Senior Research Pharmacist and Co-Director of the Paediatric Medicines Research Unit at Alder Hey said: “Rachel’s experience is not unique. Having a baby who needs neonatal care can cause stress and anxiety for parents and carers. The PADDINGToN journey began with the aim of developing better medicine information resources for use at home and will help provide that extra support and reassurance.”
The co-designed resources are paper-based and accessible on-line. They contain generic information about giving medicines, measuring doses, links to other useful resources and frequently asked questions (FAQs). Specific information about commonly prescribed neonatal medicines is also included.
Louise continued: “Parents who took part in the PADDINGToN study described the transition between hospital and home as particularly difficult and really daunting. One parent explained how helpful they would have found the PADDINGToN resources. She remembered googling in the middle of the night and told us the PADDINGToN resources would have answered her questions. Another parent said “This is a great resource. I learnt information from this resource about the medicines given to my boys that no one ever told me so I know it will be so valuable to other parents.”