Study to improve implementation of paediatric recommendations
Research type
Research Study
Full title
An investigation into the impact of a short-term, distance based intervention on the implementation of neuropsychological recommendations for families with a child who has a complex physical health condition.
IRAS ID
220848
Contact name
Jessica Watts
Contact email
Sponsor organisation
University of Exeter
Duration of Study in the UK
0 years, 7 months, 31 days
Research summary
This study aims to improve the implementation of recommendations provided to families of children (aged 5-11 years-old) with complex and serious physical health conditions. These children often have multiple health appointments and families are given many recommendations to implement. Great Ormond Street Hospital (GOSH) sees such children, especially within their Neurodisability service. The clinical teams may see children annually and provide recommendations across many areas of the child’s needs (e.g. medical and neuropsychology).
Despite families receiving support during detailed neuropsychological assessments, research indicates families struggle to adhere to more than 50% of recommendations. The current project aims to improve this figure by providing information, working with families' priorities and providing regular prompts to record recommendation implementation. Recommendations for environmental alterations and behavioural needs (neuropsychological recommendations) within the home will be focused on. Improving the implementation of these recommendations is intended to benefit the families and children through supporting them in meeting the child's needs. Additionally, success could ensure the clinical team's time is used as effectively as possible by facilitating progress for child and family.
Families with a child aged 5-11 years with a complex and serious physical health condition (e.g. Sturge-Weber Syndrome, SWS) who received their most recent report from the clinical team at GOSH at least one month previously will be eligible to participate. The study is supporting children attending mainstream school, therefore children diagnosed with an intellectual disability will not be included. The study will be completed using technology (e.g. online survey, telephone calls, text messages, video calling) and families will not be required to travel to participate. Verbal information and a visual aid will be provided to support implementation of recommendations. The visual aid will be developed with families and posted to them. From initial contact families involvement in the study will last approximately four months.
REC name
London - Surrey Borders Research Ethics Committee
REC reference
17/LO/1185
Date of REC Opinion
9 Oct 2017
REC opinion
Further Information Favourable Opinion