Hi and welcome,
As this is my first post I should probably start by explaining who I am.
My name is Jess and I'm a PhD student at Newcastle University in the UK about to enter into my second year. My PhD is being funded by the Economic Social Research Council's Northern Ireland and North East Doctoral Training Partnership and I am being supervised by Dr Anna Basu, Professor Tim Rapley and Professor Nadja Reissland. Academically my background is a little odd. I started off studying a BSc (Hons) in Human Biosciences before studying a Master of Research in Neuroscience and then a Master of Art in Developmental Psychopathology (Research Methods).
I first became interested in the early referral and diagnosis process of Cerebral Palsy while doing an internship at Newcastle University with Dr Anna Basu on the Early Therapy in Perinatal Stroke (e-TIPS) feasibility study. During my internship I was involved with a series of focus groups. Although the focus groups were on the design of the therapy materials to be used in the study, the parents involved commented on how they had felt unheard by health care professionals when raising their concerns about their child's development. These parents discussed repeated visits to their GP and feeling falsely reassured despite noticing symptoms as early as 3 weeks old.
While reflecting on these focus groups I decided I wanted to do something to help. If parents can see these symptoms so early why are they not being included in the current screening tools? Why are parental concerns not described in the literature? What are the earliest concerns parents develop? Why do only some families experience delays? Only by answering these questions can we begin to develop a tool to tackle the issue of delayed referral and diagnosis. Thus, I hope my PhD answers these questions.
At this point in time I'm carrying out a systematic review and an online parent survey. I hope the systematic review will allow me to identify the current screening tool competition and figure out why they are (or are not) being used. Similarly I hope the results of the parent survey will identify the earliest concerns parents develop, the barriers families face in getting their child a diagnosis and what currently works well with the current referral and diagnosis process in the UK. However, I will save the details for another blog!
If you have any questions please email me at J.Baggaley2@newcastle.ac.uk, follow me on twitter @JessBaggaley1 or subscribe to my blog for future updates.
Goodbye for now!
Jess
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