Early Therapy in Perinatal Stroke
Perinatal Stroke: A stroke that occurs before or around the time of birth.
This study involves babies aged 0-6 months who have had a perinatal stroke and their families and carers.
What is eTIPS?
eTIPS is a home based parent-delivered intervention for babies affected by perinatal stroke, developed by a team at Newcastle University and made possible by an NIHR Career Development Fellowship to Dr Anna Basu. Families involved are given developmental resources relevant to their baby's condition and additional support and advice throughout.
What Have We Done So Far?
Case Notes Review and Survey of Current Practice
We have been reviewing cases of perinatal stroke in the Northern region over the last decade, to understand the patterns of presentation, management and outcome. We have also undertaken a national survey of current practice. Results have been presented at National and European meetings and submitted for publication: they will be summarised here shortly.
Early Therapy Intervention Development
We have been working on the developmental resources for the parents of babies affected by perinatal stroke. We have had focus groups with parents of children who have a perinatal stroke, and also with a range of healthcare professionals. We have listened to their feedback and made changes to the resources in response. We have produced a series of manuals and videos to explain the intervention approach and delivery and are undertaking a preliminary study of these - see below. We have published a paper about the intervention development process, in BMC Pediatrics, and presented the findings at national and international meetings. We are very grateful to the Tiny Lives Charity for their support in development of the videos and photoshoots in response to parent requests.
eTIPS Pilot Feasibility Study
We have completed a feasibility trial of the eTIPS approach in the Northern Region. This was funded through the National Institute of Health Research, Newcastle upon Tyne Hospitals NHS Charity and the Tiny Lives Charity in Newcastle. This phase was to understand whether parents found the materials workable and acceptable (which they did!), and to help us prepare for the next stage. For an introduction to the pilot feasibility study, see our eTIPS video below. The study showed that the approach is feasible, acceptable, and safe. The materials we used can be freely accessed. Please note that we made two websites - one for infants who sustained a stroke affecting the left side of the brain, and therefore who might develop movement difficulties on the right side of the body; eTIPS Right from the Start; eTIPS Right from the Start; Newcastle University (ncl.ac.uk)
and one for infants who sustained a stroke affecting the right side of the brain, who might develop movement difficulties on the left side of the body. eTIPS Best from the Left; eTIPS Best from the Left; Newcastle University (ncl.ac.uk)
What Next?
We have collaborators in Pisa who are undertaking a parallel feasibility study - so we have translated the materials into Italian!
We have developed an educational package for therapists and community health professionals, thanks to further funding from the Tiny Lives Charity. This is called TEDEI and is hosted on the Newcastle University Moodle site at Short Online Courses (ncl.ac.uk).
We have been working on an approach to gather information on infant movements using movement sensors as well as observation and videoing. We are working with computing science colleagues to analyse this data and already have outputs from it.
We are now looking for funding for a large trial to investigate if the approach improves outcomes and if so, how it works.