Development of parent resources for families of deaf children
Research type
Research Study
Full title
Development of parent experience-based information resources for families of children age 0-4 years with mild/unilateral deafness
IRAS ID
313595
Contact name
Hannah Cooper
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 11 months, 28 days
Research summary
The newborn hearing screening programme identifies moderate or worse bilateral hearing loss in newborns. However it also identifies types of deafness that are not the target condition of the screening programme and for which there is limited evidence for intervention and outcomes. These include mild and unilateral deafness, both sensorineural and conductive (either permanent or due to middle ear effusions). There is very limited evidence for managing these types of deafness in young babies and toddlers, no UK guidelines for clinicians to follow and little guidance and information for parents.
The National Deaf Children’s Society is funding this study with the aim of developing an online parent experience-based resource to support person-centred care for parents of infants and young children (0-4 years) identified with mild and unilateral deafness (sensorineural, permanent conductive or temporary conductive due to middle ear effusions).
We will conduct a qualitative study to understand the parental experiences of the identification and subsequent management of mild or unilateral deafness for their children age 0-4 years. We will investigate the parental views and information needs on the management options and interventions. Using the themes identified from the qualitative research we will produce information resources for parents, illustrated with parental stories and experiences.
We will recruit parents through Audiology services at the point of the identification of deafness following referral from the newborn hearing screen or other referral sources. Any parent of a baby or child under 4 with mild and unilateral deafness will be eligible to take part. We will interview parents to find out about their experiences. The interviews will last approximately 1 hour.
The results will benefit parents through providing information and will enable clinicians to improve their support for these children once identified through the newborn screen or audiology.
REC name
London - Harrow Research Ethics Committee
REC reference
23/PR/0147
Date of REC Opinion
22 Mar 2023
REC opinion
Further Information Favourable Opinion