Parent and caregiver journeys through neurodevelopmental follow up
Research type
Research Study
Full title
Understanding parent and professional perspectives on early neurodevelopmental follow up of high risk infants in Liverpool
IRAS ID
285643
Contact name
Melissa Gladstone
Contact email
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Infants born prematurely or who have certain complications in the neonatal period are at an increased risk of neurodevelopmental delay and disability; the most common form of this being cerebral palsy. Early identifiable risk factors in the neonatal period are present in half of all infants with cerebral palsy, allowing these infants to be identified as ‘high risk’ and followed up with assessment for identification of cerebral palsy. Cerebral palsy can now be accurately diagnosed before 6 months corrected age with the use of early neurodevelopmental follow up, which uses the Prechtl’s General Movements Assessment (GMA) and Hammersmith Infant Neurological Examination (HINE). Early diagnosis is crucial to allow initiation of early interventions to maximise children’s developmental outcomes. This has become a key focus around the world and has promoted new recommendations.
Currently, no study has identified parents’ perspectives during the process of early diagnosis of cerebral palsy in their infants in the UK. No study has reported parents’ views specifically of the HINE and GMA in order to understand how they can be used as part of a process which is acceptable to parents. Additionally, previous studies have identified a need for longitudinal studies such as ‘parent journeys’ in order to understand how parents’ perspectives change over time.
Our aim is to understand the perspectives of parents and caregivers during the process of early neurodevelopmental follow up in their high-risk infants. To undertake this, we propose to utilise qualitative methods, structured to form a ‘parent journey’ style data collection process, in order to gain in-depth information regarding views and perspectives of parents and carers of high risk infants during this process. We will identify: parents’ experiences, expectations, information they have received relating to their infant’s development, where they received this, views regarding this information and how it was delivered, and suggestions regarding improvements of this process.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
20/NW/0436
Date of REC Opinion
10 Dec 2020
REC opinion
Further Information Favourable Opinion