Research projects
"Hydrocephalus and Visual Impairment"
The Association is currently part funding Research at RHSC Yorkhill and Glasgow Caledonian University into hydrocephalus and visual impairment.
"Hydrocephalus and Quality of Life survey".
The Association is also involved with Researchers from RHSC Yorkhill in a study of quality of life and resource service requirements for children with hydrocephalus.
Research has been undertaken by the NHS Greater Glasgow & Clyde (Royal Hospital for Sick Children) in conjunction with the SSBA into Adjustment and Quality of Life after Childhood Hydrocephalus - long-term outcomes for service users.
It is known that hydrocephalus can result in long term consequences, and that different children can have different problems. Many studies examine the physical and medical outcomes of this condition, but there are fewer studies that examine emotional, behavioural and cognitive needs.
We'd like to find out more about the long-term effects of hydrocephalus, particularly in terms of psychological adjustment and quality of life. We would also like to know more about the kinds of services children and parents use to help support them. The evidence so far suggests that it is important to recognise and understand the psychosocial impact of hydrocephalus, and to address what service support may be provided to children and families adjusting to living with the condition.
Questionnaires were sent out in January 2008 to parents of children who may have a diagnosis of hydrocephalus. With parental consent, we also obtained questionnaire information from teachers.
By looking at the responses from as many parents and teachers as possible, we are building up a picture of the difficulties children with hydrocephalus and meningitis have, and the services they may use. We will analyse this data, and share the findings by publishing a scientific article, and by presenting the results to service providers and service users. We will advertise any events to all parents who have taken part.
Researcher: Dr Ruth Sumpter, Clinical Neuropsychologist
Address: Fraser of Allander Unit,
Yorkhill RHSC,
Glasgow, G3 8SJ
Telephone: 0141 201 0780
Email:
Scottish Spina Bifida Association (SSBA):
Lo-call helpline: 08459 111112
Main reception: 01236 794500
