Parents of children with cochlear implants:what do they want?
Research type
Research Study
Full title
Parents' preferences for alternative care pathways for children with cochlear implants: focus groups
IRAS ID
232318
Contact name
Helen Cullington
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
0 years, 4 months, 31 days
Research summary
There are more than 600,000 people with cochlear implants in the world. Many resources are required to provide post-operative care. Support must be maintained for as long as the patient uses the implant which may be as much as 100 years for children. The patient and their family must commit to attending lifelong programming and rehabilitation. Families may travel substantial distances, take time off work, and pay for childcare for siblings.
Technology has the potential to make post-operative care more efficient and accessible. Programming an implant over the internet would reduce the need for appointments at the specialist centre. Remote monitoring could allow resources to be focused on those patients with greatest need. Self-assessment and self-management tools could empower parents to manage their child’s hearing. People with long-term conditions who are activated and empowered to manage their own care have better outcomes.
We previously completed a project which showed that adults using cochlear implants became more empowered and had better hearing when they used remote care telemedicine tools. However there is currently little evidence for what changes, if any, are preferred by parents of patients.
We previously captured the preferences of adult patients for technology-driven changes to the post-operative cochlear implant care pathway. Adults were more likely to choose remote care over usual care if they could monitor their own ability to understand speech (‘self-monitoring’) or fine-tune the settings on their own implant (‘self-tuning’). They also preferred a remote care pathway if it included personalised online support resources plus support from the implant centre.
These results are specific to adult patients and not generalizable to parents of paediatric patients, who are likely to have different preferences and needs. We will do two focus groups of parents/carers of children with cochlear implants, to ask them what they want for future care.REC name
West Midlands - Solihull Research Ethics Committee
REC reference
17/WM/0377
Date of REC Opinion
12 Oct 2017
REC opinion
Favourable Opinion